[Senate Hearing 112-921]
[From the U.S. Government Publishing Office]
S. Hrg. 112-921
OLMSTEAD ENFORCEMENT UPDATE: USING THE ADA TO PROMOTE COMMUNITY
INTEGRATION
======================================================================
HEARING
OF THE
COMMITTEE ON HEALTH, EDUCATION,
LABOR, AND PENSIONS
UNITED STATES SENATE
ONE HUNDRED TWELFTH CONGRESS
SECOND SESSION
ON
EXAMINING AN UPDATE ON OLMSTEAD ENFORCEMENT, FOCUSING ON USING THE
AMERICANS WITH DISABILITIES ACT TO PROMOTE COMMUNITY INTEGRATION
__________
JUNE 21, 2012
__________
Printed for the use of the Committee on Health, Education, Labor, and
Pensions
Available via the World Wide Web: http://www.gpo.gov/fdsys/
________
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Washington, DC 20402-0001
COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS
TOM HARKIN, Iowa, Chairman
BARBARA A. MIKULSKI, Maryland
JEFF BINGAMAN, New Mexico
PATTY MURRAY, Washington
BERNARD SANDERS (I), Vermont
ROBERT P. CASEY, JR., Pennsylvania
KAY R. HAGAN, North Carolina
JEFF MERKLEY, Oregon
AL FRANKEN, Minnesota
MICHAEL F. BENNET, Colorado
SHELDON WHITEHOUSE, Rhode Island
RICHARD BLUMENTHAL, Connecticut
MICHAEL B. ENZI, Wyoming
LAMAR ALEXANDER, Tennessee
RICHARD BURR, North Carolina
JOHNNY ISAKSON, Georgia
RAND PAUL, Kentucky
ORRIN G. HATCH, Utah
JOHN McCAIN, Arizona
PAT ROBERTS, Kansas
LISA MURKOWSKI, Alaska
MARK KIRK, Illinois
Pamela J. Smith, Staff Director, Chief Counsel
Lauren McFerran, Deputy Staff Director
Frank Macchiarola, Republican Staff Director and Chief Counsel
(ii)
C O N T E N T S
__________
STATEMENTS
THURSDAY, JUNE 21, 2012
Page
Committee Members
Harkin, Hon. Tom, Chairman, Committee on Health, Education,
Labor, and Pensions, opening statement......................... 1
Enzi, Hon. Michael B., a U.S. Senator from the State of Wyoming,
opening statement.............................................. 2
Witnesses--Panel I
Perez, Thomas E., Assistant Attorney General, Civil Rights
Division, U.S. Department of Justice, Washington, DC........... 2
Prepared statement........................................... 5
Claypool, Henry, Principal Deputy Administrator, Administration
for Community Living, U.S. Department of Health and Human
Services, Washington, DC....................................... 10
Prepared statement........................................... 12
Witnesses--Panel II
Landgraf, Rita M., Secretary, Delaware Department of Health and
Social Services, New Castle, DE................................ 22
Prepared statement........................................... 24
Baugh, Zelia, Commissioner, Alabama Department of Mental Health,
Montgomery, AL................................................. 32
Prepared statement........................................... 34
Thornton, Sr., Ricardo, Former Resident of Forest Haven,
Washington, DC................................................. 40
Prepared statement........................................... 42
ADDITIONAL MATERIAL
Statements, articles, publications, etc.:
National Disability Rights Network........................... 55
Letters:
ADAPT Community.......................................... 56
Judge David L. Bazelon Center for Mental Health Law...... 63
VOR...................................................... 65
(iii)
OLMSTEAD ENFORCEMENT UPDATE: USING THE ADA TO PROMOTE COMMUNITY
INTEGRATION
----------
THURSDAY, JUNE 21, 2012
U.S. Senate,
Committee on Health, Education, Labor, and Pensions,
Washington, DC.
The committee met, pursuant to notice, at 9:29 a.m. in room
SD-430, Dirksen Senate Office Building, Hon. Tom Harkin,
chairman of the committee, presiding.
Present: Senators Harkin, Franken, and Enzi.
Opening Statement of Senator Harkin
The Chairman. The Senate Committee on Health, Education,
Labor, and Pensions will come to order.
I apologize to everyone, but because of votes on the floor,
we had to move this up half an hour. The first vote is at
11:00, so we will have to close this down right around 11:10 or
11:15 so I can make that first vote. Then we just have a whole
bunch of votes after that, so we will not be able to come back.
I am going to ask everyone to cut their statements short, so we
can at least have some discussion between now and 11 o'clock.
The title of this hearing is, ``Olmstead Enforcement
Update: Using the ADA to Promote Community Integration.'' This
hearing follows up on a similar hearing that we held in 2010.
Tomorrow, we mark the 13th anniversary of the U.S. Supreme
Court's landmark decision in Olmstead, holding that the civil
rights of people with significant disabilities are violated
when people are unnecessarily segregated from the rest of
society. The Olmstead decision was a critical step forward for
our Nation, following in the tradition of cases like ``Brown v.
Board of Education.''
When Congress passed the ADA in 1990, we described the
isolation and segregation of individuals with disabilities as a
serious and pervasive form of discrimination. In Title II of
the ADA, which proscribes discrimination in the provision of
public services, we specified that,
``No qualified individual with a disability shall, by
reason of such disability, be excluded from
participation in, or denied the benefits of, a public
entity's services, programs, or activities.''
In Olmstead, the Court held that unnecessary
institutionalization of individuals with disabilities
constitutes discrimination, and that the two women plaintiffs
had a right to be provided community-based options.
We will hear today from leaders at the Department of
Justice, and the Department of Health and Human Services; also
a panel that includes officials from Delaware and Alabama. And
a long-time self-advocate leader from the District of Columbia
who will speak from personal experiences about life in an
institution and contrast that with his life living in the
community.
I yield to Senator Enzi. I cut my statement short because
we only have an hour and a half this morning.
Opening Statement of Senator Enzi
Senator Enzi. I know and I appreciate it.
I appreciate the passion that you have for this, and the
enthusiasm, and the great panels we are going to have today.
The Chairman. I appreciate that very much.
I want to publicly thank Senator Enzi for all of his great
work in this area too. This has been a great non-partisan, bi-
partisan issue ever since ADA, and we approach it in that same
pattern again today.
Our first panel is Mr. Tom Perez, Assistant Attorney
General for Civil Rights in the U.S. Department of Justice. He
has spent his entire career in public service, first as a
career attorney at the Civil Rights Division, and then as
Assistant Attorney General for Civil Rights at the Justice
Department, and later as Director of the Office for Civil
Rights at the U.S. Department of Health and Human Services. He
is no stranger up here. He was Special Counsel to the late
Senator Edward Kennedy, who was a former Chair, along with
Senator Enzi of this committee.
Joining Mr. Perez on the first panel is Mr. Henry Claypool,
Principal Deputy Administrator of the Administration for
Community Living at the U.S. Department of Health and Human
Services, a senior advisor to the Secretary on disability
policy. Again, long experience; 25 years of experience
developing and implementing disability policy at the Federal,
State, and local levels.
All of your statements will be made a part of the record in
their entirety, and so we will start with Mr. Perez and Mr.
Claypool. If you could sum it up in 5 to 7 minutes, I would
sure appreciate it.
Mr. Perez. I sure will.
The Chairman. Tom, welcome back.
STATEMENT OF THOMAS E. PEREZ, ASSISTANT ATTORNEY GENERAL, CIVIL
RIGHTS DIVISION, U.S. DEPARTMENT OF JUSTICE, WASHINGTON, DC
Mr. Perez. It is an honor to be here, Mr. Chairman and
Senator Enzi.
It is an honor to be here with both of you, and with this
committee, and with my friend and colleague, Henry Claypool,
and Secretary Landgraf, and other leaders throughout the
country.
The Court's ruling in Olmstead has often been called the
``Brown v. Board'' of the disability rights movement. As you
know, as you just stated, the Supreme Court in Olmstead
recognized for the first time that the civil rights for people
with disabilities are violated when they are unnecessarily
segregated from the rest of society.
When I became Assistant Attorney General, I identified
Olmstead enforcement as one of our top priorities. Consistent
with the administration's ``Year of Community Living,'' in the
last 3 years the Division has been at the forefront of ADA
enforcement involving the unjustified isolation of people with
disabilities, and taken an active role in more than 40 cases in
25 different States.
We have also significantly expanded our collaborations with
other Federal agencies including HHS and my friend Henry, the
Department of Housing and Urban Development, and the Department
of Labor. I met with Seth Harris, literally a week ago, to talk
about supported employment, an issue, I know, that is near and
dear to your heart. Partnerships with our colleagues across
agencies, stovepipe implosion, I call it. It is critical
because they reflect the lessons we have learned from the past.
Merely moving people out of institutions is not enough;
people must have access to the support of employment, services,
and housing that will enable them to be safe and succeed in the
community. In addition, the community will be a realistic
alternative only if people with disabilities, and their family,
can feel confident that the transition will be safe and that
the supports necessary to survive are, indeed, available. Our
agreements, therefore, call for discharge planning, transition
processes that provide opportunities to thoroughly explore
community placements and to connect with other families whose
loved ones have also transitioned to the community.
Throughout our Olmstead work, we helped States comply, not
only with their legal obligations under the ADA, but also with
their fiscal obligations to taxpayers by moving them from
expensive institutional care to more cost-effective community-
based services. Secretary Landgraf has been in the forefront of
that movement in Delaware, as well as Governor McDonnell in
Virginia and former Governor Perdue in Georgia. And equally
importantly, Olmstead implementation serves the State's moral
compact with people with disabilities to ensure that they can
live their highest and best uses of their talents, and realize
all of their dreams and hopes.
We have used a variety of different tools in our Olmstead
work including reaching system-wide settlement agreements to
expand community opportunities for thousands of people in
several States; filing statements of interest to help develop
the law; suing States when necessary to ensure Olmstead
enforcement; and developing guidance and a Web site on Olmstead
enforcement to help people understand their rights and
obligations.
We have engaged in the work on behalf of people with a
variety of disabilities including developmental disabilities,
intellectual disabilities, mental illness, and physical
disabilities, and on behalf of both adults and children.
This work assists people unnecessarily segregated in
institutions as well as those at-risk of institutionalization.
We have challenged unlawful segregation in a wide array of
settings including State-run facilities, private-run facilities
such as nursing homes, and board and care homes, and
nonresidential settings.
Most recently in Virginia, we entered into a landmark
settlement to shift Virginia's developmental disability system
from one heavily reliant on large, expensive State-run
institutions to one focused on safe, individualized, and cost-
effective community-based services that promote integration,
independence, and full participation by people with
disabilities in community life.
I again applaud Governor McDonnell. He was a very critical
partner in this effort to ensure not only compliance with the
ADA, but ensuring that we do so in a way that is cost-
effective, and addresses the moral compacts that I mentioned
before.
We spent a lot of time in that process consulting with the
community, because it is important to involve the community in
this effort, to hear their voice, and to make sure that their
voice is indeed heard and reflected in our agreements. There
are many other places, as I noted, where we are doing
significant Olmstead work and where such work is necessary.
In October 2010, we reached a very comprehensive agreement
with Georgia and former Governor Sonny Perdue, and I applaud
him. I went down personally and met with him. I applaud him for
his leadership so that we could help many people with
developmental disabilities and mental illness to ensure that
they can live in the most integrated setting.
As you will hear from Secretary Landgraf, in July 2011, we
reached a similarly comprehensive agreement with Delaware to
transform the State's mental health systems.
Our allies include sheriffs because all too many States--I
was with the major county sheriffs last week, and the Sheriff
in Tulsa, OK said, ``I run the largest mental health facility
in the State of Oklahoma, and that is the county jail.'' All
too frequently, county jails have become repositories for
people who do not have criminal justice needs, but have mental
health needs, but we do not have community infrastructure to
deal with it. And that is an issue that I spent literally
almost the entirety of my meeting with the sheriffs discussing.
In Georgia, the county sheriffs were very helpful in building
this new infrastructure, and elsewhere they have been
exceedingly helpful. And so, we continue to do this work across
the country.
We have filed suits, recently, in New Hampshire to address,
again, the unnecessary institutionalization of people with
mental health needs. We are working now with the States of
Mississippi and North Carolina to, hopefully, come up with
collaborative solutions to these issues because these efforts
will continue to be dynamic. They will continue to be ongoing.
We learn from every case that we do and we try to do the next
case that much better.
We are working on the issues of supportive employment. We
filed, as you may be aware, Mr. Chairman, a statement of
interest in Oregon involving private plaintiffs who asserted
that Olmstead applies to where individuals seek integrated,
supported employment services but, regrettably, they are being
unnecessarily placed in other services that are not the highest
and best uses of their talents. And as we know, Olmstead is
more than simply where you live, it is also how you live, and
that is what we are working on.
In the end, Mr. Chairman, this is about people. And I have
had the privilege of meeting with, and helping, people with
disabilities and their families. And the sentence I remember
the most from all of my conversations was a person with a
disability who was able to move into the community who said,
quite simply yet eloquently, ``Thank you for giving me back my
life.'' That is what this is about.
It is not a partisan issue. It never has been, never will
be. It is about giving people back their lives, and about
informed choice, and that is what Olmstead is about. That is
what it will continue to be.
Thank you for this opportunity to shine a light on our
work, and this important issue, and the work that lies ahead.
[The prepared statement of Mr. Perez follows:]
Prepared Statement of Thomas E. Perez
Good morning Chairman Harkin, Ranking Member Enzi and members of
the committee. Thank you for holding this hearing about implementation
of the Supreme Court's landmark Olmstead v. L.C. decision. The Court's
ruling has often and properly been called the Brown v. Board of
Education of the disability rights movement.
As the 13th anniversary of the Olmstead decision approaches, I am
pleased to testify today about the Civil Rights Division's Olmstead
enforcement work and about the Department's active role in ensuring
that people with disabilities can realize their full potential. As you
know, in Olmstead, the Supreme Court recognized for the first time that
the civil rights of people with disabilities are violated when they are
unnecessarily segregated from the rest of society. The Court's decision
acknowledged that segregating individuals with disabilities in
institutional settings deprives them of the opportunity to participate
in their communities, interact with individuals who do not have
disabilities and make their own day-to-day choices; it also recognized
that unnecessary institutionalization stigmatizes people with
disabilities, reinforcing misunderstanding and negative stereotypes.
The Olmstead decision was heralded as the impetus to finally move
individuals with disabilities out of the shadows, and to facilitate
their full integration into the mainstream of American life. Over the
several years following the decision, through advocacy and policy and
programmatic changes at the State and Federal level, there was some
progress toward this goal. But the hoped-for sea change in the lives of
people with disabilities has not come to fruition. More than a decade
after Olmstead, many individuals across the country who can live in the
community and want to live in the community remain unnecessarily
institutionalized.
For that reason, when I became Assistant Attorney General in 2009,
I identified enforcement of the Olmstead decision as one of the
Division's top priorities. In the last 3 years, the Division has been
involved in more than 40 matters in 25 States. We have also
significantly expanded our collaborations with other Federal agencies,
including the Departments of Health and Human Services (HHS), Housing
and Urban Development and Labor, recognizing that community integration
can only be successful if people have access to necessary community
services and housing. Through our Olmstead work, we help States comply,
not only with their legal obligations under the ADA, but also with
their fiscal obligations to taxpayers, by moving from expensive
institutional care to more cost-effective community-based services that
allow the State to leverage Federal dollars most effectively. As
importantly, Olmstead implementation serves States' broader interest in
serving people with disabilities in the way most conducive to
independence and full participation in community life.
The Division's Olmstead enforcement efforts have been driven by
three goals: (1) people with disabilities should have opportunities to
live life like people without disabilities; (2) people with
disabilities should have opportunities for true integration,
independence, recovery, choice and self-determination in all aspects of
life including where they live, spend their days, work, or participate
in their community; and (3) people with disabilities should receive
quality services that meet their individual needs. We have learned many
important lessons from the past. Chief among them is that it is not
enough to move people out of institutions; we must ensure that
individuals have the support and services that they need to lead
successful lives in the community.
We have used a variety of different tools in our Olmstead work,
including reaching system-wide settlement agreements to expand
community opportunities for thousands of people in several States;
filing statements of interest in private litigation when questions
arise regarding the ADA's legal requirements when necessary, bringing
suit in court against noncompliant States and other public entities;
and developing guidance documents and a Web site on Olmstead
enforcement to help people understand their rights and to help public
entities understand and implement their obligations. We have engaged in
work on behalf of persons with a variety of disabilities, including
developmental disabilities, intellectual disabilities, mental illness,
and physical disabilities, and on behalf of both adults and children.
This work assists people unnecessarily segregated in institutions as
well as those at risk of segregation. We have challenged unlawful
segregation in a wide range of settings, including State-run
institutions, privately run institutions, such as nursing homes and
board and care homes, and other non-residential settings.
matters regarding state-run institutions
The initial focus of our Olmstead work was on States that
unnecessarily segregate individuals in public institutions or that
place people at risk of entering public institutions. Our work focuses,
not just on getting people out of these facilities, but also on the
systemic reforms needed to ensure that public agencies do not put
people at risk of unnecessary institutionalization.
Most recently, in Virginia we entered into a landmark settlement,
to resolve the Department's finding that Virginia's system for serving
people with intellectual and developmental disabilities violates the
ADA by placing people in or at-risk of unnecessary
institutionalization. The agreement will shift Virginia's developmental
disabilities system from one heavily reliant on large, expensive,
State-run institutions to one focused on safe, individualized, and
cost-effective community-based services that promote integration,
independence and full participation by people with disabilities in
community life. The agreement expands and strengthens every aspect of
the Commonwealth's system of serving people with intellectual and
developmental disabilities in integrated settings, and it does so
through a number of services and supports.
Among other things, the settlement agreement:
Adds thousands of new Medicaid Home and Community Based
Waiver slots for individuals to transition to the community from State-
run and privately run institutions and for people on wait lists for
community services;
Creates a new family support program to help care for
persons with disabilities in their own homes or a family members' home
to prevent their unnecessary institutionalization;
Requires the development of a comprehensive crisis system
that will help divert individuals from unnecessary
institutionalization;
Provides for an integrated housing fund because we
recognize that housing is a critical barrier to giving full force to
the Olmstead decision;
Requires the development and implementation of an
Employment First Policy, prioritizing integrated, competitive-wage
supported employment and the expansion of integrated employment and day
activities; and
Requires the development of a robust and comprehensive
community quality assurance system.
Throughout the investigation that led to the Virginia settlement,
we met with stakeholders across the Commonwealth, to learn their views
about what was and was not working for people with developmental
disabilities. We heard their problems and concerns, and ideas for
addressing them, as well as their successes. We heard from families who
were barely hanging on while their loved ones sat on long wait lists
for community services and from self-advocates wanting more
opportunities to work and live independently. We also heard from the
families of persons now living in institutional settings who worried
whether the needs of their loved ones could ever safely be met in
community settings. We took these perspectives to heart, and
incorporated them into our agreement.
These stakeholder views have been shared, not only with the
Department, but also with the Federal judge who is considering whether
to permanently approve the agreement. In responding to the Court's
invitation to submit comments on the agreement, several hundred
Virginians movingly described the real-life impact of the shortcomings
in the Commonwealth's current developmental disability service system,
and explained why transformation of that system is so important. Some
of these individuals also submitted affidavits supporting the
agreement.
For example, a single mother who is caring for a pre-adolescent son
with severe autism, developmental and behavioral needs, and who faces
an 8-year waiting list for home and community-based waiver services,
told the Court that she is ``overwhelmed by the thought of the years
ahead'' and not sure how she can continue to care for her family
without the types of behavioral supports provided by the Virginia
agreement. This woman wrote that receiving waiver supports would
``dramatically improve'' her well-being, the well-being of her son, and
the well-being of his non-disabled brother. The parents of a 21-year-
old with multiple disabilities who has always lived at home expressed
their gratitude for recently received waiver services that allowed them
to avoid institutionalization and to continue to allow their son to
``enjoy his life to the fullest.'' These parents urged the Court to
approve the Agreement for the benefit of many other families who
``desperately'' need services but do not currently have them. Another
parent, whose 6-year-old daughter is one of approximately 7,000
individuals on a wait list for waiver services, described her joy in
seeing that her child ``thrives in the community'' and her hope that
her daughter can live in the community as an adult. She added, however,
that at present, her family and many others ``live in crisis'' waiting
for needed services.
I have also spoken with a number of parents of people living in the
Commonwealth's training centers and they were very concerned, as they
wondered what sort of quality control would be in place if or when
their child moved into a decentralized setting in the community. I
respect this concern. The Olmstead decision recognized that people with
disabilities will move to appropriate community-based settings if they
do not oppose such placement. For too long, people with disabilities
have not been given meaningful choices or appropriate information to
make informed choices about community services. Moving to the community
will not be a realistic option for persons with disabilities if they
and their families do not believe that the transition will be made in a
thoughtful, respectful manner, and if they cannot feel confident that
persons with disabilities will have the support needed to be safe and
to thrive in the community. That is why the Virginia agreement includes
a discharge planning process that includes family and community
providers, and provides the opportunity to thoroughly explore community
alternatives. Our consideration of the concerns expressed by family
members is one of the reasons why the Virginia agreement includes
enhanced protections for any person transitioning from a training
center to the community.
The requirements in the Virginia agreement build and expand upon
settlements we've reached in the past. For example, in October 2010,
the Department, the HHS Office for Civil Rights, and Georgia reached a
comprehensive, court-enforceable agreement regarding the Georgia system
for serving people with developmental disabilities and mental illness.
As a result of the agreement, Georgia is putting into place community-
based services and supports for more than 1,000 individuals with
developmental disabilities and expanding home and community-based
waivers for individuals transitioning out of the State's developmental
disabilities facilities and for people who are at risk of
institutionalization. The State is also developing services and
supports for more than 9,000 people with mental illness.
In the first year of the agreement, Georgia provided supported
housing to more than 100 individuals with mental illness, and will
provide the same supports for an additional 400 individuals with mental
illness this year. The State increased its existing community services
to 20 Assertive Community Treatment (ACT) teams; two intensive case
management teams; two community support teams; and maintained a crisis
hotline, case management services, five crisis stabilization units, and
peer support services. One State psychiatric hospital was closed, and
the State negotiated agreements for the provision of services in
community hospitals. Among the individuals who benefit from these
actions is a man with a mental health diagnosis had been chronically
homeless and was living in a tent. Initially, the ACT team worked with
this man to find temporary housing at an extended stay hotel. Once his
housing voucher was approved, the ACT team helped him search for a
suitable apartment until he chose one he liked and moved in. He
continues to live this stable environment.
For individuals with developmental disabilities, since signing the
agreement, Georgia has ceased admissions to its State hospitals,
transitioned 247 people out of these hospitals, funded an additional
100 community waivers, and created six mobile crisis teams and five
crisis respite homes. The State provided family supports to 450
families of individuals with developmental disabilities this fiscal
year. These changes helped a 9-year-old with developmental
disabilities, who had spent her entire life living in one of the State
hospitals, to move to the community. As a result of the agreement, this
child is now living in a host home with a family and a nurse who is
available to provide 24-hour-a-day care; in the fall, she will attend a
new school where she will have the opportunity to relate to other
children her age.
In July 2011, we signed a comprehensive agreement with Delaware to
transform that State's mental health system. Over the next 5 years,
Delaware will prevent unnecessary hospitalization by expanding and
deepening its crisis services, including a hotline, crisis walk-in
centers, mobile crisis teams, crisis apartments and short-term crisis
stabilization programs. Delaware will also provide community treatment
teams and case management to individuals living in the community who
need intensive levels of support. Our agreement also provides for
scattered-site supported housing for everyone in the agreement's target
population who needs it. Finally, Delaware will offer supports to
enable persons with mental illness to lead integrated daily lives,
including supported employment, rehabilitation services and peer and
family supports. I'm pleased to report that Delaware is well on the way
to meeting the agreement's July 2012 compliance benchmarks, including
for crisis services, treatment, family support, supported housing and
supported employment.
In a recent Delaware monitoring visit, a Civil Rights Division
attorney met with several people who, as a result of the agreement,
have moved from Delaware's State psychiatric hospital into their own
apartments in the past year. These individuals include a formerly
homeless woman; a man who had many years of involvement with the
criminal justice system; and a long-term psychiatric hospital resident.
Our attorney also met a 21-year-old woman who, due to recently enhanced
peer counseling, is now preparing to move from the State hospital to
her own apartment in the community. These individuals described the
positive change that our agreement had made in their lives. They said:
``It's one more day closer to Christmas;''
``I'm no longer invisible, people see you and say hi to
you;''
``Independence means being able to accept friendship from
other people;''
``I now have the right to just live and the freedom to open
and close doors;'' and
``Thank you for giving me back my life.''
There are so many other places where we are doing significant
Olmstead work and where such work is necessary. In December 2011, we
issued findings that the State of Mississippi is violating the ADA and
Olmstead in the operation of its mental health and developmental
disabilities system. We are currently negotiating with Mississippi to
change its service delivery system from one that unnecessarily
institutionalizes thousands of adults and children to one that provides
real opportunities to people unnecessarily institutionalized or at risk
of unnecessary institutionalization. In New Hampshire, we issued
findings in April 2011 that New Hampshire unnecessarily segregates
individuals with mental illness in institutional settings and places
individuals with mental illness living in the community at serious risk
of institutionalization. We recently intervened in private Olmstead
litigation to address these violations.
matters regarding privately owned segregated settings
States' Olmstead obligations are not limited to people who are
forced to live in publicly run institutions. As many States have been
decreasing their reliance on publicly run institutions, we have seen
more and more individuals with disabilities inappropriately segregated
by States in privately owned or operated institutions, including
nursing homes. We have been very active in Olmstead enforcement in this
area. For example, in July 2011, the Division moved to intervene in
private litigation filed on behalf of a class of approximately 4,000
individuals with developmental disabilities in or at risk of entering
nursing facilities in Texas. Many of the class members had lived in the
community successfully, but ended up in a nursing home because of the
way the State administers its program of services for individuals with
developmental disabilities.
Additionally, after a lengthy investigation of North Carolina's
mental health service system, the Division issued a findings letter in
July 2011 concluding that the State is violating Olmstead by
administering its system in a manner that unnecessarily segregates
persons with mental illness in large, privately owned adult care homes.
The Department recommended that the State implement certain remedial
measures, including the development of scattered site-supported housing
and the provision of adequate, community-based support services for
people with mental illness who are unnecessarily institutionalized, or
at risk of unnecessary institutionalization, in adult care homes.
Currently, the Department is negotiating with North Carolina to resolve
these findings.
The Division also continues its participation in Disability
Advocates, Inc. v. Cuomo, a case in which a Federal court in New York
found, after a trial, that New York discriminates against persons with
mental illness by operating its mental health service system in a
manner that confines them to large, for-profit adult homes, when they
could and want to receive services in community settings. After the
Second Circuit vacated the trial court's decision on jurisdictional
grounds, the Division is considering its options for how to proceed in
the case and, as with any case, seeks to resolve the case without
resorting to litigation.
In other instances, we have learned of States that are segregating
children in private nursing homes, depriving them of the opportunity to
live with their families and in the community. In Virginia, we learned
of almost 200 such children in private nursing homes and private
developmental disability facilities, and our agreement provides
community relief for them. We currently have an investigation in
another State regarding children with physical and developmental
disabilities in or at risk of entering nursing homes. We also have an
open investigation into whether a State is unnecessarily placing people
with physical disabilities at risk of being forced into nursing homes.
statements of interest
The work I have described above is in addition to the Division's
participation in dozens of private lawsuits concerning the right of
persons with disabilities to receive services in the most integrated
setting appropriate to their needs. We have filed briefs in 27 other
matters in 17 States supporting private litigation regarding people who
are unjustifiably confined to institutions or at risk of being
segregated in an institutional setting unnecessarily.
guidance and web site
The Department also has developed resources to help people to
understand their rights and to help States understand and implement
their obligations. In June 2011, we issued the Division's first
technical assistance document on Olmstead enforcement. In this
document, we describe the requirements of the ADA's integration mandate
and provide a series of questions and answers on a range of topics.
Among other things, this document makes clear the Department's view
that both the mandate of Olmstead and the appropriate remedy to
unnecessary segregation apply to the full range of settings in which
individuals with disabilities live, work, and receive services. We also
have a Web site dedicated to Olmstead enforcement, which includes links
to settlements, briefs, findings letters, and other materials.
interagency collaboration
In 2009, on the 10th anniversary of the Olmstead decision,
President Obama launched the ``Year of Community Living'' directing all
relevant Federal agencies, including the Departments of Justice, Health
and Human Services, and Housing and Urban Development (``HUD''), to
work together to make the promise of Olmstead a reality for Americans
with disabilities. We have embraced this directive and worked in
partnership with HHS, HUD, the Department of Labor, and other agencies
that have primary responsibility for programs that are essential to
community integration.
We have worked with HHS, particularly the Centers for Medicare and
Medicaid Services and the Substance Abuse and Mental Health Services
Administration, to aid States in making the systemic changes necessary
to provide community-based services to individuals who would be in, or
at risk of, institutional placement. We have also worked with the HHS
Office for Civil Rights (OCR) in matters where we have a shared
enforcement interest. For example, in Georgia, the State failed to
comply with a voluntary resolution agreement between OCR and the State
to resolve longstanding Olmstead complaints and DOJ worked with OCR and
the State to achieve a comprehensive, court-enforceable settlement. DOJ
is currently investigating a matter in another State where OCR was
unable to secure voluntary compliance. Moreover, as evident from the
relief we sought in Virginia, Delaware, Georgia and other cases, we
know that the lack of affordable housing is one of the biggest barriers
to community living. So, we have been working with HUD to help identify
for States Federal resources for affordable integrated housing.
We have also collaborated with HHS and HUD on policy development,
and we continue to work with HHS, including its newly aligned
Administration for Community Living, and HUD to develop and disseminate
policies that can promote integration in a consistent and comprehensive
way.
ongoing and future work
The Department's Olmstead enforcement activities are dynamic and
ongoing. We have several ongoing investigations, and are addressing new
issues, including: the segregation of children with disabilities,
people with disabilities inappropriately in nursing homes, and the
segregation of people with disabilities in day-time activities,
including segregated work. With regard to employment, the Division has
expanded its Olmstead work to look beyond just where people live to
examine how people live and spend their days. Simply moving someone
from an institution to a community-based residence does not achieve
community integration under Olmstead if that person is still denied
meaningful integrated ways to spend their day and is denied the
opportunity to do what so many people do--pursue competitive employment
in the community. And so, in a Federal case in Oregon, we recently
filed an amicus brief supporting private plaintiffs who asserted that
Olmstead applies to a situation in which individuals seek integrated
supported employment services but are instead placed by the State in
employment settings in which they have little or no opportunity to
interact with non-disabled workers or to learn valuable skills that
would assist them in working in competitive employment. In addition,
our settlement agreements in Virginia and Georgia require the States to
expand supported employment opportunities for individuals receiving
services under those agreements; and our findings letters in
Mississippi and New Hampshire noted a lack of integrated day
opportunities, including supported employment opportunities, for
individuals receiving services in the State.
As I consider the Department's Olmstead accomplishments to date,
and our plans for the future, I continue to take inspiration from
people with disabilities, their families and their caregivers. These
individuals express the harm of segregation and the value of
integration more eloquently than any lawyer's brief ever could. They
are the heroes of this civil rights movement. And so, I end this
testimony with the words of a family member who wrote urging the Court
to approve our Virginia agreement. This woman, who initially raised her
son at home, very reluctantly sent him to a State institution for lack
of community alternatives, and most recently has seen him make great
strides upon returning to community living, told the Court:
``In my view, it is good for all of us to be able to see that
people with disabilities are a part of our society and belong
to us. We can respect them, admire them, interact with them,
have admiration and compassion for some of the challenges they
face--and we can be inspired. People with disabilities are part
of us--and should not be put in isolation, unseen and
unappreciated.''
The Department of Justice will continue to do all we can to ensure
that our Olmstead enforcement lives up to these words.
Thank you.
The Chairman. Thank you very much, Mr. Perez, for a very
profound statement.
Now, we will turn to Henry Claypool.
STATEMENT OF HENRY CLAYPOOL, PRINCIPAL DEPUTY ADMINISTRATOR,
ADMINISTRATION FOR COMMUNITY LIVING, U.S. DEPARTMENT OF HEALTH
AND HUMAN SERVICES, WASHINGTON, DC
Mr. Claypool. Chairman Harkin and Ranking Member Enzi,
thank you for the opportunity to testify before you today.
Chairman Harkin, I would be remiss if I did not take this
opportunity to acknowledge your leadership in protecting the
rights of Americans with disabilities to live independently in
their communities.
I would also like to recognize my colleague, Tom Perez,
when the Olmstead decision was handed down, he served as the
Director of the Office of Civil Rights at HHS. Today, he leads
the Nation's Olmstead enforcement efforts at DOJ, and it is a
privilege to testify with him today.
In 1995, with the State of Georgia refusing to allow two
women to live and receive services in the community, Lois
Curtis filed suit under the name ``Olmstead v. LC.'' The
Supreme Court ruled on the case in 1999 and today, Lois rents
her own home, lives a meaningful life as a valued member of her
community.
Recognizing that there is still much work to be done, and
in his first months in office, and on the 10th anniversary of
the Olmstead decision, President Obama sought to invigorate
enforcement of Olmstead by announcing the ``Year of Community
Living.'' This initiative established critical partnerships
between HHS, HUD, and DOJ and it sparked new activities to help
individuals with disabilities transition from institutions to
the community.
In addition to DOJ's enforcement efforts that Tom just
outlined, HHS and HUD have developed an unprecedented
partnership to address one of today's most significant barriers
to living in the community: the lack of accessible and
affordable housing for people with significant disabilities.
Under the leadership of Secretaries Sebelius and Donovan,
the HUD--HHS partnership has begun to change how housing and
health care agencies view their relationship with regard to the
needs of individuals with disabilities. In the initial year of
the partnership, 5,300 housing vouchers were issued to people
with disabilities that rely on supportive services. This
includes nearly 1,000 vouchers that were coordinating rental
assistance with the long-term services and support that people
need to live in the community.
HHS has also worked closely with HUD to improve integration
in the Section 811 program. Just last month, HUD announced a
new funding opportunity under this program that now limits the
number of apartments that can be exclusively set aside for
people with disabilities to a maximum of 25 percent. This is a
fundamental shift in housing policy at HUD, bringing a key
program into alignment with the principles of the ADA, and
promoting efforts for Medicare to serve people in the most
integrated setting.
On March 23, 2010, President Obama signed the Affordable
Care Act which set forth numerous protections for all Americans
including people with disabilities, and fills in an important
piece of the ADA by addressing health care discrimination, and
improving affordability.
Of note, the law strengthens the Money Follows the Person
program which provides States Federal support to help
institutionalized individuals get out and return to their
community by expanding the MFP program through 2016, and
investing an additional $2.25 billion in the program. The
success of the MFP program can be understood through the story
of Quentin Hammond.
Quentin had a brain injury as an infant, and was placed in
a nursing home for the first 6 years of his life. Thanks to the
tireless advocacy of his mother, Quentin was able to leave the
nursing home and move home with his mother and brother. Through
the Money Follows the Person program, Quentin is receiving
necessary services and supports to live at home, and today
attends school.
And thanks to your leadership again, Chairman Harkin,
States have another incentive to reduce the institutional bias
in Medicaid. The Community First Choice option, as you know,
this program includes Federal Medicaid support for States that
choose to offer new personal attendant benefit to beneficiaries
who would otherwise face institutional placement. We anticipate
several States will adopt this option, helping beneficiaries
avoid unwanted institutions and bolstering State resources.
In keeping with the integration mandate of the Americans
with Disabilities Act, and as required by the Olmstead
decision, these critical provisions of the health care law
provide new ways to serve people in home and community-based
settings.
The President's ``Year of Community Living,'' critical
health care improvements thanks to the Affordable Care Act, and
the need to continue to transform our health care delivery
system have all culminated in Secretary Sebelius's creation of
the Administration for Community Living. This new agency
creates a home within HHS for aging and disability policy and
programs. Many in the aging and disability community have an
extraordinary reliance on health care and long-term services.
Among other activities, the Administration for Community Living
will work closely with CMS to improve coordination of health
care services with the essential long-term services and
supports that help people live in the community.
We are excited about this new agency and the emphasis it
places on policies that support community living and community
integration. We look forward to working with all stakeholders,
including Congress, in our commitment to ending the very
discrimination that Lois Curtis experienced in Georgia more
than 13 years ago.
Thank you, again, for inviting me to testify today, and I
look forward to answering any questions.
[The prepared statement of Mr. Claypool follows:]
Prepared Statement of Henry Claypool
Chairman Harkin, Ranking Member Enzi and members of the committee,
thank you for the opportunity to testify this morning on the Supreme
Court's Olmstead decision, and the Department of Health and Human
Services' (HHS) commitment to ensuring that individuals with
disabilities can live and participate fully in their communities with
access to the services and supports they need.
Chairman Harkin, I would be remiss if I did not take this
opportunity to acknowledge your leadership in protecting the rights of,
and advocating for increased opportunities for, Americans with
disabilities to live as valued and contributing members of their
communities. Not only did you author the Americans with Disabilities
Act (ADA) and serve as its chief sponsor in the Senate, but today--
almost 22 years later--you continue to offer unwavering support to
ensure that Americans with disabilities have full access to society,
including the right to live independently in their own communities.
I would also like to take a moment to recognize my colleague, Tom
Perez. When the Olmstead decision was handed down, he was serving as
the Director of the Office on Civil Rights at HHS, and helped issue the
Department's first guidance to State Medicaid directors on how to make
State programs responsive to and comply with Olmstead. Today, as
Assistant Attorney General for Civil Rights at the Department of
Justice (DOJ), he continues to place a high priority on Olmstead
enforcement, among the many other important civil rights matters at
DOJ. Thank you, Tom. It is a pleasure to testify here with you today.
In 1999, the Supreme Court determined in its Olmstead ruling that
under the ADA, it is discrimination to unnecessarily institutionalize a
person with a disability who chooses to live in the community with the
proper services and supports, and does not oppose community placement;
taking into account the resources available to the State. This
Administration has made significant strides, as well as key
investments, toward the day that all Americans with disabilities can
live in a home of their choosing, accessing the services and supports
they need and experiencing the dignity and respect that comes with the
opportunity to fully participate in all aspects of our communities.
Before I share with you some of the key investments and
achievements the Department of Health and Human Services has made in
recent years to ensure that individuals with disabilities can achieve
their right to live fulfilling, healthy lives in the community, I first
want to take a moment and recognize where we started.
In 1967, the number of individuals with intellectual and
developmental disabilities living in institutions reached the peak of
nearly 195,000 on an average day.\1\ While that number had dropped to
about 60,000 \2\ by the mid-1990s, there were still many individuals--
including Lois Curtis and Elaine Wilson--who were living in
institutions and wanted to live freely in their communities. In 1995,
with the State of Georgia refusing to allow the women to live and
receive services in a more integrated, community-based setting, Lois
and Elaine filed suit, under the name Olmstead v. LC and EW. Today,
Lois rents her own home and is finally able to live a meaningful life,
contributing as a member of society through creating and selling art.
---------------------------------------------------------------------------
\1\ Statistic comes from http://rtc.umn.edu/docs/risp2010.pdf, p.
12.
\2\ Statistic comes from http://rtc.umn.edu/docs/risp2010.pdf, p.
12.
---------------------------------------------------------------------------
year of community living
Recognizing that there is still much work to be done, in his first
months of office President Obama sought to focus on the goals of the
Olmstead decision by announcing the ``Year of Community Living.''
Announced on the 10th anniversary of the decision, this initiative
established critical partnerships between three Departments of the
Federal Government and has sparked new activity to help individuals
with disabilities transition from institutions into the community.
Specifically, in this signature disability initiative, the President
called for an unprecedented partnership between HHS and the Department
of Housing and Urban Development (HUD) to address one of the most
significant barriers to living in integrated settings: accessible and
affordable housing for those living with a disability who want to live
in the community.
Under the leadership and direction of Secretary Sebelius and
Secretary Donovan, our agencies meet regularly to identify and
implement strategies that address the coordination of long-term
services and supports with accessible and affordable housing,
particularly for individuals at risk of institutionalization. In the
initial year of the partnership between HHS and HUD, the coordination
of $40 million in Section 8 housing choice vouchers made it possible
for 5,300 people with disabilities, who rely on supportive services to
live in the community, to access affordable housing across the country.
This includes nearly 1,000 vouchers designated for individuals
transitioning to community-based services and supports through the
Federal Money Follows the Person program.
The awarding of nearly 1,000 vouchers was a deliberate effort by
HHS and HUD to coordinate rental assistance, health care and other
supportive services to support to this population and help States
comply with Olmstead. For States that are actively working to comply
with Olmstead and re-balance their Medicaid long-term services and
supports programs to increase the emphasis on providing services in
home and community-based settings instead of institutional settings,
the lack of affordable and accessible housing remains a significant
barrier to people with disabilities seeking to realize their right to
live in the most integrated setting. The HHS-HUD partnership has begun
to change how the housing and health care agencies at the State and
Federal level view their relationship with regard to the needs of
individuals with disabilities--a population they are both charged with
serving.
We have seen how this type of partnership and innovation affects
individual lives. Three years ago, a mother of two named Sonia was
crossing the street when a car hit her, put her in a coma for 5 months,
and left her with the left side of her body paralyzed and in a nursing
home separated from her children. Last June, she received a housing
voucher and services under the Money Follows the Person program,
allowing her to return home. Today she can support and play with her
children, go to job training, and participate in her community.
Moreover, HHS has also worked closely with HUD to implement changes
to improve integration of HUD's Section 811 Program, which is designed
to develop and subsidize rental housing for very low-income adults with
disabilities. Last month, HUD announced a new $85 million funding
opportunity under the Section 811 program for State housing agencies
that meet new eligibility criteria, including having a partnership with
a State health and human services agency and Medicaid agency, to
provide essential supports and services that help people live in
integrated settings in the community. This funding opportunity works to
align critical health and housing services, and aims to assure
integration by setting the number of apartments that can be exclusively
set aside for people with disabilities at 25 percent. This is a
fundamental shift in housing policy at HUD and brings the Section 811
program into alignment with the principles of the Americans with
Disabilities Act and promotes Medicaid efforts to serve people in the
most integrated setting appropriate to their needs.
The reinvigoration of the efforts by the Department of Justice to
enforce the Olmstead decision was the other component of the
President's ``Year of Community Living.'' The testimony of Assistant
Attorney General Perez outlines the steps taken by DOJ to ensure that
States understand how they can comply with the ADA when they use
Medicaid to provide long-term services and supports. HHS has worked
closely with DOJ on matters related to Olmstead. Specifically, HHS'
Office for Civil Rights (OCR) partners with DOJ to enforce the ADA and
the Olmstead decision. For example, in 2008, OCR entered into a
voluntary resolution agreement with the State of Georgia to resolve
Olmstead complaints regarding the State's mental health and
developmental disabilities systems. The State failed to comply with the
agreement and DOJ initiated litigation. In October 2010, OCR, DOJ and
the State of Georgia signed a comprehensive settlement agreement that
will ensure that thousands of people with disabilities will receive
community services instead of institutional care. OCR continues to
resolve Olmstead complaints, often working with people with
disabilities, families, advocates, State agency officials, and other
HHS agencies to ensure that individuals can remain in the community
without risk of institutionalization and have the opportunity to
transition to the community from an institutional setting.
To organize and coordinate efforts at HHS related to the
President's ``Year of Community Living,'' Secretary Sebelius created
the Community Living Initiative. This facilitated a cross-agency
workgroup that met to discuss key issues related to community living
and the infrastructure of the home and community-based services
delivery system. Along with access to affordable housing, the
initiative addressed the needs of the workforce that provides
community-based services and supports, providing new opportunities to
make community-based services available under the Medicaid program, and
explored how gathering better data related to disability could enhance
the quality of these home and community-based services. Historically,
the approach to defining home and community-based services has been
exclusively focused on defining services and settings against the
framing of ``not an institutional setting'' instead of defining the
positive and necessary elements that create a home in the community.
The cross-agency workgroup's work on person-centered planning and self-
direction was incorporated into the Community First-Choice and the
1915(i) State Plan Home and Community-Based Services rulemaking, which
has helped inform the agency's current effort to define the locations
in which Medicaid recipients are receiving coverage for home and
community-based services.
Finally, in addition to the Community Living Initiative, Secretary
Sebelius formed an HHS Coordinating Council, bringing together multiple
HHS agencies and offices and asking them to coordinate their efforts to
build and strengthen home and community-based services. Workgroups have
been formed to address issues such as affordable housing, building the
home and community-based workforce, improving employment supports, and
enhancing access to services. Discussions in these intra-
departmental conversations inform HHS' work internally and its
engagements with other agencies that are part of the Community Living
Initiative.
affordable care act
On March 23, 2010, President Obama signed the Affordable Care Act,
which set forth numerous protections for all Americans, including
people with disabilities, filling in an important piece of the ADA by
addressing healthcare discrimination and improving access and
affordability.
Thanks to the new healthcare law, people like Tina from Michigan
have more control and access over their healthcare. Tina has epilepsy
that requires consistent monitoring and care. After graduating from
college at the age of 22, Tina could find a job, but she couldn't find
health insurance except for a very limited policy that did not meet her
needs. Now, because of the Affordable Care Act, Tina--who is now 24
years old--can stay on her family's health insurance plan until she is
26, which not only provides great coverage but also includes the
doctors who know her, understand her epilepsy, and whom she trusts.
Moreover, starting in 2014, Tina and other people with disabilities
will be protected by the law's prohibition on some insurance companies'
egregious practices of denying benefits or charging more to any person
based on their medical history. For children younger than age 19, the
law has already gone into effect, and insurance companies can no longer
discriminate and deny coverage based upon pre-existing conditions for
children and youth.
Not only does the Affordable Care Act expand access to health
coverage, but also it expands affordability for many low-income
individuals, including many people with disabilities. Specifically,
starting in 2014 the new health care law includes a Medicaid program
expansion that will reach more Americans, including some people with
disabilities. This expansion will cover many low-income people with
disabilities who do not currently meet the Social Security
Administration's definition of disability.
Another critical aspect of the Affordable Care Act are the
provisions that address long-term services and supports, including re-
balancing Medicaid investments from institutions to home and community-
based services. Specifically, the law strengthens the Money Follows the
Person (MFP) program, which provides States significant Federal support
to help institutionalized individuals get out of their institutions and
return to their homes or other community settings, which in almost all
cases substantially improves their quality of life. By extending MFP
through 2016 and investing an additional $2.25 billion in funding, the
program will build on its successes to date, which in the past 5 years
has helped 20,000 individuals leave institutions for the community.
Today, 43 States and the District of Columbia are participating in MFP,
and the renewed commitment toward MFP in the Affordable Care Act means
that thousands more can leave institutions and live where they want
with the services that they need.
The successes of this program can be understood through the story
of Quentin Hammond. After a traumatic brain injury as an infant,
Quentin lived in a nursing home for the first 6 years of his life,
where he was not engaged at his fullest potential. He was misdiagnosed
as being blind and non-responsive. However, thanks to the Money Follows
the Person program and the tireless advocacy of his mom, Quentin was
able to leave the nursing home and move home with his mom and little
brother, receiving the necessary services and supports so that he got
the same high-level of care. Quentin now attends school and is learning
to communicate. His quality of life has improved tremendously.
This critical choice to be able to live in one's own home, and have
access to the medical services and supports they need, are the exact
kinds of rights that the Affordable Care Act gives Americans,
especially Americans with disabilities.
In addition to strengthening the Money Follows the Person program,
the Affordable Care Act gives new incentives for States to offer home
and community-based long-term services and supports as an alternative
to institutions. Under the Balancing Incentive Program, $3 billion in
enhanced Federal Medicaid matching funds are available to States that
make structural reforms to increase nursing home diversions and access
to non-institutional long-term services and supports. In March 2012,
New Hampshire and Maryland were the first States to receive this new
funding; and Georgia, Iowa, Mississippi, and Missouri have all since
been approved to participate in the program as well.
States have an additional incentive to reduce the institutional
bias in Medicaid through the Community First-Choice program, which
increases Federal Medicaid support for States that choose to provide
home and community-based attendant services to Medicaid beneficiaries
otherwise facing institutional placement. In addition to receiving a
broad range of services, Community First-Choice recipients must have
their self-determination supported through the opportunity to develop a
person-centered plan that allows the individual to determine how
services are provided. The Community First-Choice benefit will further
assist Medicaid beneficiaries in avoiding unwanted institutional
placement while at the same time providing States with more resources
to support this work.
Finally, the Affordable Care Act makes investments to integrate
care delivery under Medicaid and Medicare for dual eligibles. Often,
people with disabilities are beneficiaries under both programs,
creating the need for care coordination and management across these two
programs. Done right, the integration of these two programs can improve
access to essential health care services and promote enhanced access to
long-term services and supports, which can help avoid unnecessary
hospitalization and institutionalization for people with disabilities,
and at the same time lowering costs to our Nation's healthcare delivery
system.
In keeping with the integration mandate of the Americans with
Disabilities Act, and as required by the Olmstead decision, these
critical provisions of the health care law provide new ways to serve
more people in home and community-based settings.
administration for community living
The President's Year of Community Living, the Secretary's Community
Living Initiative, critical improvements thanks to the Affordable Care
Act, and the pressing need to continue to transform our health care
delivery systems, have all culminated in Secretary Sebelius' creation
of the Administration for Community Living.
Today, I serve as the Principal Deputy Administrator of the
Administration for Community Living, as well as Senior Advisor to the
Secretary for Disability Policy. Kathy Greenlee maintains her role as
Assistant Secretary for Aging, while also serving as the Administrator
of the new agency.
The establishment of the Administration for Community Living
creates a single agency charged with developing policies and improving
supports for seniors and people with disabilities by bringing together
the key organizations and offices focused upon these populations. The
agency builds upon this Administration's work to promote the goals of
the Americans with Disabilities Act: to assure equality of opportunity,
full participation, independent living, and economic self-sufficiency
for individuals with disabilities. We are committed to improving the
broad range of supports that individuals may need, focusing on
populations that have an extraordinary reliance on health care and
long-term services and supports. Ultimately, the integration of the
health care system and the long-term services and supports systems is
essential to the health and well-being of millions of Americans with
disabilities and seniors that have functional support needs.
The Department's efforts to better align the Medicare and Medicaid
programs hold great promise to improve the health of those eligible for
both programs, such as younger adults with disabilities and seniors who
have chronic health conditions and functional support needs. To that
end, the Administration for Community Living will work closely with the
Centers for Medicare & Medicaid Services to advance its alignment
efforts directed to the population jointly served by the two agencies.
The potential for better coordination of health care and crucial
community-based services and supports will be an area of emphasis for
the new agency.
We realize that we are serving diverse populations, including frail
elders, individuals with physical disabilities, and those with
intellectual and developmental disabilities across the life-span.
Representing the voice of each of the populations served is core to the
work of the entities coming together under the Administration for
Community Living. This will continue with an increased strength through
a unified mission while still acknowledging the unique needs and
attributes of each group. However, these communities share a common
vision--that all Americans should have the right to live in a home of
their choosing, with people whom they care about, that is integrated
into a community that values their participation and their
contributions--and the Administration for Community Living will work to
support that vision.
We also know that community living relates to more than where
people live. Integration requires the availability of appropriate
supports including opportunities in health care, housing, employment,
education, childcare, and social participation for people with
disabilities and older Americans. The Administration for Community
Living will take a holistic approach to meeting the community living
needs of people with disabilities and older Americans.
We are excited about this realignment and the renewed focus the
development of the Administration for Community Living has placed on
community living and community integration at HHS and across the
Administration. At the Department of Health and Human Services, we look
forward to working internally, with other agencies across the
Administration, with Congress, and with the public at large to advance
policies that support community living and ensure that those who have
been harmed by discrimination, like Lois Curtis, can pursue their
passions living in the community.
Thank you again for inviting me to testify and at this time I would
be happy to address any questions.
The Chairman. Thank you very much, Mr. Claypool.
Both of you, thank you for your long-time leadership on
this issue. You have just been, both been, stalwarts and I
cannot thank you enough.
We will start a 5-minute round of questions here. Mr.
Perez, you mentioned about the sheriff saying the jails are now
our mental health places. I have had the same thing happen to
me in Iowa, too; come to me saying, ``You have got to do
something, because there are people here that should not be in
the jail.'' They need to be out in the community, they need
supportive services, but they just do not have the wherewithal
to do that. We are getting a lot of input, I know, from our law
enforcement people around the country on this.
But there are a couple of questions I want to ask both of
you. First of all, two parts. No. 1, it just frustrates me to
no end that I keep hearing from parents who have children or
young adults with disabilities. They want them in community
settings. They want to get them out of an institution, but they
are worried about, ``What happens when I die?'' They are
worried about the long term. They might see it now but, ``Can
you guarantee me that this is going to be there 20 years from
now?'' that type of thing.
Please address that issue, give me some idea of what things
do we need to do, to put in place the structures that will meet
the test of time.
The second part of the question is that you both alluded to
the stovepipes that are out there. I think Mr. Perez made that
statement ``stovepipes''. This new Administration for Community
Living is crossing over into different agencies, and one of the
things you are talking about is affordable housing which is
critical--critical--for people with disabilities.
Talk a little bit about, both of you, this long-term plan
and how we set structures in place. And second, how satisfied
are you with the fact that you are now getting into different
agencies, HUD and everybody else, working together on housing
and supportive services; those two elements.
Mr. Perez. I think as to your first question, Mr. Chairman,
it is so important to learn from the past.
The institutionalization movement of the 1970s, the
profound mistake that was made was opening the doors of
institutions when the community infrastructure did not exist.
And as a result, when you hear the sheriffs in Wyoming and in
Iowa telling you that, ``My facility is the largest mental
health facility in my area,'' that is because we did not plan
for it as a Nation and as communities.
If you look at our agreements--and Secretary Landgraf can
talk about it in the mental health context, as well as the
witness from Alabama--we are building community infrastructure,
assertive community treatment teams, crisis intervention, a
short-term bed so that if an officer encounters a person who is
clearly in crisis, the choices are not simply the emergency
room or the jail. You have these other options in place in the
community.
Having that robust infrastructure in place is, I think, a
key to addressing the question I hear so often from parents,
``I am 70 years old and my son, or daughter, or niece, or
nephew, is 48. I am not going to be around forever. What is
going to happen with them?'' I think we owe it to them to build
that community infrastructure. I think we know a lot about what
that infrastructure needs to have.
And if you look at the building blocks of our agreements in
Virginia, and Delaware, and elsewhere, Georgia, what you will
see is what we spent in Virginia, we spent 5 months talking
about quality assurance, because if I cannot look you in the
eye as a government official and say, ``Your loved one is going
to be cared for in a safe environment,'' then I have no
business being in this business. That is what we have spent so
much time working on. And you see there are all sorts of
quality assurance mechanisms built-in to our agreements because
we have to make sure we have that infrastructure.
Governor Perdue in Georgia, invested something like $500
million over the course of a few years in a tough fiscal
environment because they recognized that you have to think long
term when you are thinking about these issues.
I think we have a blueprint that can work, that learns from
our mistakes, and can move forward.
As to your second question, I am a firm believer that the
most vexing public policy questions that we confront here at
the Federal level are those through which unprecedented levels
of interagency collaboration are required. If you help a person
with a disability get a job, but then they lose the health
insurance that they have been getting, it is a Pyrrhic victory.
We have to have one agency talking to the other.
If we help a person get into a community-based setting, but
we cannot insure that the housing and the transportation is
there so they can get to a job, then we have not--they are all
links on a chain, and every link has to be there.
That is why, for instance, in the employment setting, an
issue I know is one of many that is near and dear to your
heart, we met literally within the last 2 weeks--convened by
Deputy Secretary Harris--HHS, DOJ, DOL, and the EEOC to talk
about: how can we ensure that integrated supportive employment
becomes the norm and sheltered work-shops become increasingly
the exception? Because that is what the integration mandate is
about; it is not just where you live, it is how you live.
I think those stovepipe implosion initiatives are beginning
to bear fruit, and I hope they will continue because that is
how you solve these problems. You do not just sit here at the
Department of Justice and figure out, how do you sue them? You
have to figure out, how do you solve them?
We have had many willing Governors, and I want to
underscore that. I mean, I have great respect for the
leadership of Governor McDonnell on this issue in Virginia, for
Governor Perdue in Georgia, for Governor Markell in Delaware.
They all came to the table in good faith. And they recognized
in Delaware that spending $200,000 of State-only dollars to
treat someone in a State institution, no Federal reimbursement,
is not cost-effective among other things, aside from not the
best way to do it.
I think we can do it. I think we have a blueprint. I think
we are implementing blueprints and we are learning from those
blueprints. We learn from our mistakes and we try to get
better.
The Chairman. Thank you very much, Mr. Perez.
Mr. Claypool, anything to add? My time has run out.
Mr. Claypool. I think your questions are very poignant and
in some way, they are almost answered together.
But the infrastructure, I think the record is replete with
our efforts to make investments in the home and community-based
delivery system. They are bipartisan and they extend back to
the Olmstead decision. You have Money Follows the Person
passing with the Deficit Reduction Act in 2005. You see it
again affirmed in the Affordable Care Act and the investments
made there.
So there is clearly an effort to move the Medicaid program
in this direction toward building the community-based
infrastructure that Tom has mentioned, and really making some
solid investment so that people can lead quality lives there.
We continue to push forward on those efforts with these
investments.
But really the second part of your question about the
partnerships that we have are critical to making sure that the
quality experience that people have living in the community is
held up. Without HUD and HHS working together and better
understanding how the programs can synchronize with each other
to support an individual, we will not get there. But as we can
see, the stovepipe implosion is already underway. These
barriers are breaking down, and I just do not think we can turn
back.
It is becoming increasingly apparent that the individuals
that are relying on HUD services, especially those with
disabilities, often have supportive services needs. And finding
new ways for housers to understand how they can work with
partners in health care agencies is just essential.
And to that end, we have been working with CMS to make sure
that we are holding forums across the country where we can
really introduce, not just at the Federal level the HUD staff
to the HHS staff, but at the State and local level, building
these partnerships to make sure that these two are working
together and making sure that there is an infrastructure
available to support people. And that it is a quality
infrastructure, and that we need not look to institutional
settings to reassure family members that this is their only
alternative.
Senator Enzi. Thank you, Mr. Chairman.
Mr. Perez, the Department of Justice's oversight and
enforcement efforts seem largely focused on the States'
Medicaid program.
Are you investigating the enforcement of the Olmstead
compliance beyond the Medicaid program, for example, meeting
with Medicare or with the Veteran's Affairs program?
Mr. Perez. Our enforcement program certainly overlaps
significantly with Medicaid because many of the populations at
risk are receiving Medicaid dollars, but it is certainly not
limited to that.
We have actually begun a number of conversations with the
Department of Veterans Affairs because we have many service
members with disabilities returning home, and we want to make
sure that they, too, receive care and treatment in the most
integrated setting appropriate to their needs.
In addition, we have cases involving nursing homes. We have
a case in Texas involving people in nursing homes, so our focus
has really been expansive. We have a lot of cases in the
developmental disability setting, in the mental illness
setting, but we also have cases involving nursing home care.
I am really glad, Senator Enzi, that you brought up the VA
issue because we really want to make sure that our vets
returning home who have serious disabilities are, indeed,
treated in the most integrated setting. That is certainly an
area of renewed focus in the last year.
Senator Enzi. So that is a relatively new initiative, then?
Mr. Perez. I would agree with that.
Senator Enzi. And you mentioned Virginia, and Delaware, and
Georgia frequently.
Mr. Perez. Yes.
Senator Enzi. How did you decide to concentrate on those
States?
Mr. Perez. Well, in all of those States, we had information
that led us to be very concerned that there were violations.
They are not the only States where we have concerns.
As I mentioned, we have been involved in one way, shape, or
form in about 25 States in about 40 different matters. We have
attempted in our work to come up with some evidence-based
metrics to determine which States are unduly institutionally
reliant, and Mississippi is an example.
Mississippi is one of the most institutionally reliant
States in the country, and I would observe that they are a
State that is probably leaving, as much as anyone, the most
Federal dollars on the table because they are eligible for a
number of enhanced matches under Medicaid given the nature of
the populations that they are serving, and other indices. When
we looked at that and saw the level of unnecessary
institutionalization, that was certainly what brought us into
the State of Mississippi.
Senator Enzi. So they have been passing up on some
resources.
Mr. Perez. They sure have.
Senator Enzi. What kind of limitations are there on State
resources that you are running into?
Mr. Perez. Certainly State budget limitations are
undeniably an issue that we confront from time to time.
What we want to make sure, and what we have done working
with States, is to make sure that they are making
individualized determinations, as opposed to kind of blanket,
across-the-board cuts because many of the cuts, aside from
implicating the ADA potentially, can be actually cutting off
your nose to spite your face.
By that I mean if someone is in a community, is receiving
community services which are undeniably less expensive and you
cut those services, and then that person goes into an
institution, you are going to be on the hook for far more
dollars. We really try to work hard to educate and prevent.
And in the budget context, we really tried to do just that
because some of the proposed cuts have been--I can understand
why; the necessities. I worked in State government. I worked in
local government. I have an acute appreciation for the budget
woes, but you need a scalpel not a sledgehammer, and sometimes
the use of a sledgehammer not only has perverse fiscal impact
by making it more expensive, but it can have ADA implications.
Senator Enzi. Yes. I would followup more on that, but now I
want to ask Mr. Claypool.
You have been working with this consolidation of the
Administration on Aging and the Office of Disability
Administration into a single new agency, and the supports go
well beyond health care. You mentioned appropriate housing, I
think you mentioned employment education, meaningful
relationships, and social participation.
How are you specifically engaging with HUD, and other
agencies, to support that goal for enforcement?
Mr. Claypool. Thank you for the question.
The Secretary has just created the Administration for
Community Living, so I will not have a full answer to the
extent of which partnerships that we will develop over time,
but I certainly can identify some really solid starting points.
One of them, and just in terms of, you have acknowledged
that the aging and disability agencies are coming together
within the Department, and that is an important first step,
making sure that we are looking at the needs of people with
disabilities, as well as older Americans when we address issues
like access to transportation. It is critical that we view
these together, and that we look for opportunities to move
forward where the needs are the same. Of course, we see that in
housing as well.
You have mentioned the VA, and I thought this might be an
opportunity to highlight one of the initiatives that the
Administration for Community Living has already released.
We have created a partnership with HHS and with the VA
where basically in our partnership with CMS, we are creating an
enhanced front door to Medicaid long-term care services. Making
sure that people understand what their options are when they
are looking for these long-term care services, so that people
do not unnecessarily end up in a nursing home, and part of this
new initiative involves a collaboration with the VA.
We are working with them, and they are working closely at
the State and local level with the aging infrastructure, with
the area agencies on aging, to provide a new service, which is
called VA's Home and Community Based Services Delivery System.
It basically allows vets that would otherwise have to rely on
an agency or perhaps even an institution for the long-term
services and the supports they need to hire whomever they
choose. It might be a family member, it might be someone in
their community to provide those types of basic, personal
supports that they need in their home, allowing the vet to
really return right back to the environment where they can best
pursue their rehabilitation and community integration.
It is partnerships like these that are really essential to
making sure that the Administration for Community Living
realizes its very ambitious goal of living up to the values of
the ADA, and the important principle of community integration.
Senator Enzi. Thanks to both of you.
Mr. Perez. Thank you both.
The Chairman. Thank you both very much.
A lot of different streams are starting to come together.
Last year, the U.S. Chamber of Commerce made a commitment to
work with all their member companies in the United States to
increase employment of people with disabilities by 1 million by
2015. So that is happening.
There are interesting things happening in the private
sector. We had a meeting in Connecticut a couple of weeks ago.
It was fantastic. It was sponsored by Walgreens; the CEO was
there. We had the CEOs of other large corporations--UPS,
Lowe's, OfficeMax, a lot of different companies were there--and
we got to see, firsthand, people with disabilities working in
competitive employment.
Now this is happening in the private sector because
Walgreens has shown that people with disabilities can work
alongside people without disabilities, you cannot tell who is
who and which is which. And it is not that they are doing it
out of some goodness of their heart. They are doing it because
it helps their bottom line, and these people are more
productive. They show up to work on time, they do their jobs,
and so I see this now starting to spread around the country.
What we have to be prepared for is the other elements of
transportation, housing, some supportive services for people
like that. Then they can get into competitive employment. So I
see these things kind of coming together. I would hate to see
the private sector moving ahead on this, hiring people with
disabilities, but the people with disabilities cannot get to
work, or they have some element of their life that will not
permit them to get to work because they need something in the
morning to get them going, or something like that, some
intervention to help them get to work, or after work, or
something like that.
Again, I think we are at a point now where all of this is
kind of coming together, and that is why I like this idea of
breaking down the stovepipes, working with HUD, working with
all these different people, working with State Governors to
help put these things in place so that we have a fully
integrated system.
I did not mean to go off so long, but Senator Franken is
here. Did you want to have a question?
[Inaudible.]
Thank you both very much. We will now call our second
panel.
Our first witness is Rita Landgraf, currently Secretary of
the Delaware Department of Health and Social Services. For more
than 30 years as the executive director of the ARC of Delaware,
and the National Alliance on Mental Illness in Delaware, and
president of AARP Delaware, she has been a leader on
disability, health care, and aging issues.
Our second witness is Zelia Baugh. Miss Baugh is the
commissioner of the Alabama Department of Mental Health.
Commissioner Baugh has led Alabama's efforts on Olmstead
compliance by increasing community-based options for
individuals who were at institutional settings, and focusing on
home and community-based services. And we have heard a lot
about the good work that is being done in Alabama.
Our final witness is Mr. Ricardo Thornton. Mr. Thornton is
a former resident of Forest Haven, which was the District of
Columbia's institution for people with developmental
disabilities. Since leaving there, Mr. Thornton has been a
strong advocate for increasing home and community-based
opportunities for people with disabilities. He speaks
internationally on deinstitutionalization, advocacy, human
rights, and Special Olympics, and is a mentor and advocate for
people with disabilities in the District. He is married, and is
a father and a grandfather.
Welcome to you all. Your statements will be made a part of
the record in their entirety. We will go from left to right. If
you could sum it up in 5 to 7 minutes, I would appreciate it.
Miss Landgraf, please proceed.
STATEMENT OF RITA M. LANDGRAF, SECRETARY, DELAWARE DEPARTMENT
OF HEALTH AND SOCIAL SERVICES, NEW CASTLE, DE
Ms. Landgraf. Thank you, Mr. Chairman and Ranking Member
Enzi.
I am so honored to testify before you today about the
progress being made on advancing community inclusion for
individuals with disabilities.
My role in public service is mainly due to my role as a
lifelong advocate in the area of disabilities, health care, and
senior issues. As you heard, as former executive director of
the ARC of Delaware, as executive director of the National
Alliance on Mental Illness in Delaware, and as president of
AARP in Delaware, I do not believe it is enough for us to be in
mere compliance with the Americans with Disabilities Act and
the Olmstead ruling, but we as State leaders must embrace the
intent of the law beyond the compliance, and embed inclusion
and the benefits of diversity as a core value. We must engage
our partners across the Federal, State, and local government,
and be inclusive of individuals with disabilities as we develop
best practice policy and implementation.
This is not merely meeting the objectives of enforcement or
a settlement agreement. It is about systemic reform that
enables services to meet the desires of the market, to live
ordinary lives with identified support. Our State and Federal
systems need to ensure that our services adhere to these goals
that many of us take for granted.
We know that States, CMS, and disability advocates are
beginning to evolve to a new understanding of the Olmstead
community integration mandate. The fundamental question is how
government resources can support a quality of life for people
with significant disabilities, eligible for Medicaid funding
that enhances full community participation, independent living,
and economic self-sufficiency.
Today in Delaware, it is a value that we are committed to
extending across the State through meaningful systemic reform
that promotes integration of individuals with disabilities in
our society. Our Governor, Governor Jack Markell, is committed
to this priority bringing the full weight of his office and the
political will to accomplish this restructuring. However, the
Delaware system has not evolved dramatically since the passage
of ADA in 1990 and since the 1999 reaffirmation of the
integration mandate by the Olmstead ruling.
For decades in Delaware, the State has had an over-reliance
on facility-based care and options within community have been
limited to mid- to small-group living homes. Far too many
individuals were placed in institutions and remained there for
extended periods. Since 2009 under the Markell administration,
we have focused on shifting our resources and our delivery
strategy to a community first focus. Communities should be the
norm, not the exception.
The level of reform Delaware is addressing for individuals
with serious, persistent mental illness is seen by us as the
prototype for all with disabilities and the aging population in
need of supports. It begins with a simple, but powerful
expectation: individuals with disabilities can live in their
own home, have meaningful employment, and be ordinary
Delawareans. They may require some level of support, but those
supports need to be provided that effectively foster
independence and fully engaged participation in society.
A pivotal benchmark for Delaware to excel in our commitment
to meaningful reform is the July 6, 2011 settlement agreement
between the State and the U.S. Department of Justice which
resolved a 3-year investigation of the Delaware Psychiatric
Center. More importantly, the agreement became the blueprint
for how Delaware will provide mental health services for
individuals with severe and persistent mental illness and,
indeed, creates the prototype for systemic reform across
government.
In order to comply with the agreement, the State must
prevent unnecessary institutionalization by offering agreed
upon community-based services to the target population with
serious, persistent mental illness who are at the highest risk
of institutionalization. And we are engaging in the development
of upgraded community supports and services. We want to make
our State a leader in mental health services, and the U.S. DOJ
shares our vision.
Given our State's fiscal challenges, the need for smarter
budgeting, smarter spending, and smarter management that must
take center stage if we are to achieve meaningful integration,
we need to embrace the philosophy of community-based living.
But without the re-balancing and flexibility of our funding
system, the system will remain vulnerable to stagnation and
erosion.
The Department is focused on the development of a quality
assurance program that incentivizes payments based on outcomes
as they relate to the promises of Olmstead and the ADA, and not
funds for sheer volume. As a State, we are focused not only on
supporting individuals moving out of the Delaware Psychiatric
Center and into the community, but are actively assessing all
within our State facilities, and asking if they want to return
to their communities, and we are assisting them in doing so.
The underlying support for full community participation
must be a focus on financial capability and advancing economic
self-sufficiency. The Olmstead community integration mandate
compels us to attack poverty and financial instability through
financial coaching as part of an individual's Medicaid support
plan. In Delaware, we use our government infrastructure to
reset the focus to change thinking and behavior about financial
capability through an integrated system of supports that
enhance financial empowerment, skills, and outcomes.
I believe we also need ADA--Olmstead Ambassadors throughout
the States to promote the premise behind the civil rights
movement, and institute a broad education campaign. States must
incorporate this awareness throughout their delivery system and
in all areas of the cabinet to fully support the civil rights
of individuals with disabilities as a core value.
In closing, permit me to share with you my early lesson on
inclusion. My path here today began when I was 12 years old
when a young neighbor, Mike, who had an intellectual disability
ventured out into our community to befriend us. What Mike
wanted was to be included with his peers and be a part of our
group. What he encountered was ridicule at his expense. The
memory still weighs heavy on my mind and my heart. I did not
tease Mike, but I did nothing to stop the others.
That haunting look on Mike's face changed my life forever,
and I committed myself to working toward a system that educates
and promotes diversity and inclusion. Mike on the red bike
taught me my first lesson on the value of inclusion. I saw Mike
a few years back and he told me that he now drives a car, works
at a farmer's market, and is married. He is an ordinary
Delawarean, a full community member, and he was smiling
broadly. I told him that he was also a great teacher.
Individuals with disabilities are our greatest teacher. We need
to listen.
Thank you for the opportunity to testify, and I look
forward to your questions.
[The prepared statement of Ms. Landgraf follows:]
Prepared Statement of Rita M. Landgraf
summary
Mr. Chairman and members of the committee, I am honored to testify
before you today about the progress being made on advancing community
inclusion for individuals with disabilities. My name is Rita Landgraf
and I am the Cabinet Secretary for the Delaware Department of Health
and Social Services or DHSS. My role in public service is mainly due to
my role as a lifelong advocate in the areas of disability, health care
and senior issues, including as the former executive director of The
Arc of Delaware and the National Alliance on Mental Illness in
Delaware, and president of AARP Delaware.
I do not believe, it is enough for us to be in mere compliance with
the Americans with Disabilities Act and the Olmstead ruling, but we, as
State leaders, must embrace the intent of the law beyond the compliance
and embed inclusion and the benefits of diversity as a core value. We
must engage our partners across the Federal, State and local
governments, and be inclusive of individuals with disabilities as we
develop best practice policy and implementation. This is not merely
meeting the objectives of enforcement or a settlement agreement. It is
about systemic reform that enables services to meet the desires of the
market to live ordinary lives with identified supports. Our State and
Federal systems need to ensure that our services adhere to these goals
that many of us take for granted.
We know that States, CMS, and disability advocates are beginning to
evolve to a new understanding of the ``Olmstead Community Integration
Mandate.'' The fundamental question is about ``how government resources
can support a quality of life for people with significant disabilities
(eligible for Medicaid funding) that enhances full community
participation, independent living and economic self-sufficiency.''
Today, in Delaware, it is a value that we are committed to
extending across the State through meaningful systemic reform that
promotes integration of individuals with disabilities in our society.
Our Governor, Governor. Jack Markell, is committed to this priority,
bringing the full weight of his office and the political will to
accomplish this restructuring. However, the Delaware system has not
evolved dramatically since the passage of ADA in 1990 and since the
1999 reaffirmation of the Integration Mandate by the Olmstead ruling.
For decades in Delaware, the State has had an overreliance on
facility-based care and options within the community have been limited
to mid- to small-group living homes. Far too many individuals were
placed in institutions and remained there for extended periods. Since
2009, under the Markell administration, we have focused on shifting our
resources and our delivery strategy to a community-first focus.
Community should be the norm not the exception. The level of reform,
Delaware is addressing for individuals with serious persistent mental
illness is seen, by us, as the prototype for all with disabilities and
the aging population in need of supports. It begins with a simple, but
powerful expectation:
Individuals with disabilities can live in their own home, have
meaningful employment and be ordinary Delawareans. They may require
some level of support, but those supports need to be provided that
effectively foster independence and fully engage participation in
society.
A pivotal benchmark for Delaware to excel in our commitment to
meaningful reform is the July 6, 2011, settlement agreement between the
State and the U.S. Department of Justice which resolved a 3-year
investigation of the Delaware Psychiatric Center. More importantly, the
agreement became the blueprint for how Delaware would provide mental
health services to individuals with severe and persistent mental
illness, and creates the prototype for systemic reform across the
government, in support of all individuals with disabilities.
In order to comply with the agreement, the State must prevent
unnecessary institutionalization by offering agreed upon community-
based services to the target population, a subset of individuals with
SPMI (serious, persistent mental illness) who are at the highest risk
of unnecessary institutionalization and the development of upgraded
community supports and services. We want to make this State a leader in
mental health services, and the USDOJ shares that vision.
Given the fiscal challenges, the need for smarter budgeting,
smarter spending, and smarter management must take center stage if we
are to achieve meaningful integration. We need to embrace the
philosophy of community-based living, but without the re-balancing and
flexibility of the funding system, the system will remain vulnerable to
stagnation and erosion. DHSS is focused on the development of a quality
assurance program that incentivizes based on outcomes as they relate to
the promises of Olmstead /ADA and not funds for volume. As a State, we
are focused not only on supporting individuals moving out of DPC and
into the community, but are actively assessing all within our State
facilities and asking if they want to return to their community and are
assisting them to do so.
The underlying support for full community participation must be a
focus on financial capability and advancing ``economic self-
sufficiency.'' The Olmstead Community Integration Mandate compels us to
attack poverty and financial instability through financial coaching as
part of an individual's Medicaid support plan. In Delaware, we will use
our government infrastructure to reset the focus to change thinking and
behavior about financial capability through an integrated system of
supports that enhance financial empowerment skills and outcomes.
I believe we need ADA/Olmstead Ambassadors throughout the States to
promote the premise behind the civil rights movement and institute a
broad education campaign. States must incorporate this awareness
throughout the delivery system and in all areas of the Cabinet to fully
support the civil rights of individuals with disabilities as a core
value.
In closing, permit me to share with you my early lesson on
inclusion:
My path here today began when I was 12 years old, when a
young neighbor Mike who had an intellectual disability,
ventured out into our community to befriend us. What Mike
wanted was to be included with his peers and be a part of our
group. What he encountered was ridicule at his expense. The
memory still weighs heavy on my mind and heart. I didn't tease
Mike, but I did nothing to stop the others. That haunting look
on Mike's face changed my life, and I committed myself to
working toward a system that educates and promotes diversity
and inclusion. Mike on the red bike taught me my first lesson
on the value of inclusion. I saw Mike a few years back and he
told me that he now drives a car, works at a farmer's market
and is married. He is an ordinary Delawarean, a full
participating community member and was smiling broadly. I told
him that he was also a great teacher.
Thank you for this opportunity to testify and I look forward to
your questions.
______
Mr. Chairman and members of the committee, I am honored to testify
before you today about the progress being made on advancing community
inclusion for individuals with disabilities. My name is Rita Landgraf
and I am the Cabinet Secretary for the Delaware Department of Health
and Social Services or DHSS. DHSS is the largest State agency,
employing over 4,000 individuals in a wide range of public service
jobs. Our department includes 12 divisions, which provide services in
the areas of public health, social services, substance abuse and mental
health, child support, developmental disabilities, long-term care,
visual impairment, aging and adults with physical disabilities, and
Medicaid and medical assistance. The Department includes four long-term
care facilities and the State's only psychiatric hospital, the Delaware
Psychiatric Center.
Our Department's mission is to improve the quality of life for
Delaware's citizens by promoting good health and well-being, fostering
self-sufficiency, and protecting vulnerable populations.
My role in public service was mainly due to my role as a life-long
advocate in the areas of disability, health care and senior issues,
including as the former executive director of The Arc of Delaware and
the National Alliance on Mental Illness in Delaware, and president of
AARP Delaware. I am a firm believer in the Supreme Court's Olmstead
decision and the Americans with Disabilities Act. In other words, I am
a believer that individuals with disabilities have the same rights as
all citizens to live in community and it is our responsibility, in the
public sector, to provide supports to enable them to exercise that
right in a meaningful and purposeful way.
I do not believe, it is enough for us to be in mere compliance with
the ADA--Integration Mandate and Olmstead, but we, as State leaders,
must embrace the intent of the law beyond the compliance and embed
inclusion and the benefits of diversity as a core value. We must engage
our partners across the Federal, State and local governments, and be
inclusive of individuals with disabilities as we develop best practice
policy and implementation. This is not merely meeting the objectives of
enforcement or a settlement agreement; it is about systemic reform that
enables services to meet the desires of the market to live ordinary
lives with identified supports. It means embracing and embedding the
ADA purpose statement (section 12101 (a) (8)):
The Nation's proper goals regarding individuals with
disabilities are to assure equality of opportunity, full
participation, independent living, and economic self-
sufficiency for individuals with disabilities.
Our State and Federal systems need to ensure that our services
adhere to these goals that many of us take for granted.
i. delaware's experience with community integration of people with
disabilities and the olmstead decision
We know that States, CMS, and disability advocates are beginning to
evolve to a new understanding of the ``Olmstead Community Integration
Mandate''. The fundamental question is about ``how government resources
can support a quality of life for people with significant disabilities
(eligible for Medicaid funding) that enhances full community
participation, independent living and economic self-sufficiency?''
Today, in Delaware, it is a value that we are committed to
extending across the State through meaningful systemic reform that
promotes integration of individuals with disabilities in our society.
Our Governor, Governor. Jack Markell, is committed to this priority,
bringing the full weight of his office and the political will to
accomplish this restructuring. However, the Delaware system has not
evolved dramatically since the passage of ADA in 1990 and since the
1999 reaffirmation of the Integration Mandate by the Olmstead ruling.
Unfortunately, for decades in Delaware, the State has had an over
reliance on facility-based care and options within community have been
limited to mid- to small-group living homes. Far too many individuals
were placed in institutions and remained there for extended periods.
Delaware's institutional bias has been significant. For our State, an
AARP survey found that 87 percent of the State's long-term care funds
for aging and physical disability services is spent on care at
facilities, compared to the national rate of 66 percent. When the
developmental disabilities population is included, Delaware does fair
better in meeting the national average, but this was a result of
litigation action by The Arc against the State in 2002. The 2002
litigation did indeed impact the delivery of services to those with
developmental disabilities and enhanced community supports, but did not
promote systemic reform across government. Since 2009, under the
Markell administration, we have focused on shifting our resources and
our delivery strategy to a community first focus. Individuals with
disabilities should not have to prove that they are worthy of
community. We ask that of no other population cohort and community
should be the norm not the exception. The level of reform Delaware is
addressing for individuals with serious persistent mental illness is
seen, by us, as the proto-type for all with disabilities and the aging
population in need of supports. It begins with a simple, but powerful
expectation:
Individuals with disabilities can live in their own home,
have meaningful employment and be ordinary Delawareans. They
may require some level of support, but those supports need to
be provided that effectively foster independence and fully
engage participation in society. This is the norm for
individuals without disabilities.
A pivotal benchmark for Delaware to excel in our commitment to
meaningful reform is the July 6, 2011 settlement agreement between the
State and the U.S. Department of Justice which resolved a 3-year
investigation of the Delaware Psychiatric Center.
More importantly, the agreement became the blueprint for how
Delaware would provide mental health services to individuals with
severe and persistent mental illness, and creates the prototype for
systemic reform across the government, in support of all individuals
with disabilities.
ii. creating systems that will make olmstead a reality
In order to comply with the agreement, the State must prevent
unnecessary institutionalization by offering agreed upon community-
based services to the target population. The target population is a
subset of individuals with SPMI (serious, persistent mental illness)
who are at the highest risk of unnecessary institutionalization. The
agreed upon plan requires Delaware to move individuals from Delaware
Psychiatric Center (DPC) into the community and for upgraded community
supports and services. Our discussions with the USDOJ impressed upon
them that we share their vision for improved mental health services in
this State. The USDOJ findings made clear what we already knew, what we
knew we needed to do and where we were already headed, which was to
stop the historical over reliance on institutionalization and moving to
more community-integrated and compassionate care. I believe this is an
agreement that reflects where we want to take this State. We want to
make this State a leader in mental health services, and the USDOJ
shares that vision.
The agreement is a multi-year commitment to provide improved mental
health services in Delaware. To the USDOJ, it may be about ensuring
we're complying with the Americans with Disabilities Act. But to us, it
is about providing services to our neighbors, our family members, and
our friends who have persistent mental health issues but who can, with
the right support, be full participating, thriving members of our
communities. More importantly, this agreement is the blueprint for how
we are going to provide mental health services to persons with severe
and persistent mental illness in this State. It will also set the
direction for how we re-tool our system for all with disabilities. It
is an approach based on providing services to people in the community,
so that we can achieve better outcomes for persons with mental illness,
and we can do so in a manner that protects their independence and sense
of community.
iii. how the state is advancing the reform on the ground
I now wish to focus on how the State is innovating practices to
accelerate building a recovery-based, community-robust system of care.
DHSS created a new Request for Proposal (RFP) directed toward
facilitating the discharge of individuals who have been
institutionalized at DPC, most from 6 to more than 15 years. The RFP
developed a ``case rate'' for each individual at DPC and these will be
bundled into a total amount that will represent that provider's budget
for this work. The provider will be expected to provide every service
and support required for each of these individuals with the exception
of significant physical health care emergencies. This rate is now a
comprehensive rate that allows for all inclusive care and will
incentivize the provider to support the individual within the least
restrictive environment and will provide the funds to enhance the
community level of support. The focus of our 5 year plan is:
Establishment of community-based programs and use of DPC
as an acute mental health hospital for stabilization as a hospital
would be for individuals with a physical health crisis.
Establishment of Individualized Recovery Plans, inclusive
of the individual's dreams.
Expansion of the crisis hotline to 24-7.
Expansion of Mobile crisis teams that can respond across
the State within an hour's timeframe.
Development of a new crisis walk-in center in our rural
county and crisis stabilization beds throughout the State in typical
apartment settings.
Expanded consumer run drop-in centers.
Peer-to-peer counseling. The successful implementation of
a Peer Support Specialist program at DPC to work with the DPC Recovery
Teams and the Community providers to model individualized treatment and
recovery planning strategies.
Effective July 1, Medicaid will reimburse for
telemedicine services--this is extremely important in our rural
locations, inclusive of:
Consultations, office or outpatient visits,
Psychotherapy,
Medication management,
Psychiatric interview or examination, and
State Rental Assistance Program (SRAP).--Bridge
financing via vouchers and connections with typical landlords.
Delaware developed the State Rental Assistance Program (SRAP)
to serve low-income Delawareans who require affordable housing
and supportive services to live safely and independently in the
community. At DHSS, we are referring individuals from DPC and
from other State-run nursing facilities to the Delaware State
Housing Authority for rental housing vouchers. One of the most
difficult things for individuals who have been in an
institution for a long period is affording a place to live.
SRAP provides that necessary foundation in making that
transition. DHSS has created a Housing Team made up of
individuals from within our disability divisions that are
dedicated to becoming housing support experts to continue to
assist in supporting individuals locate the housing of their
choice as well as working with our State Housing Authority and
municipalities to expand the integrated housing for individuals
with disabilities.
Given the fiscal challenges, the need for smarter budgeting,
smarter spending, and smarter management must take center stage if we
are to achieve meaningful integration. We need to embrace the
philosophy of community-based living but without the re-balancing and
flexibility of the funding system, the system will remain vulnerable to
stagnation and erosion. Most States have funding aligned with
infrastructure, in personnel, buildings that are growing older and in
repair, rather than funding the individual based on their
individualized plan and integrating with the natural environment.
Inclusion allows for leveraging of resources both paid and natural. So
we can leverage our existing resources both fiscal and human with a
focus on community. We are shifting resources out of the facilities and
promoting a community-based system of support. DHSS is focused on the
development of a quality assurance program that incentivizes based on
outcomes as they relate to the promises of Olmstead/ADA and not funds
for volume. If we evaluate based on the ADA and individuals
achievements, we are placing a monetary value on the ADA principle.
Some refer to this as re-balancing or re-tooling, regardless of the
term, it is an effort to resource the community and leverage both
funding and resources throughout and across the government.
In addition to the operational implementation of Olmstead and ADA,
the Department is engaging in a State public policy review. We have a
rather antiquated law relative to detainment and commitment which has
led to over 3,000 yearly involuntary commitments. That amounts to
approximately eight involuntary commitments per day. The State has in
the past funded the involuntary commitments but did not fund voluntary
commitments. We are working toward revamping the detainment law and
will require a new credentialed mental health screener, who will be an
expert in community-based options and work closely with the emergency
doctors, psychiatrists, and others to divert individuals to the most
appropriate care level. DHSS is advocating changing how emergency
evaluations are conducted, preventing unnecessary encounters with law
enforcement and avoiding needless trips to emergency rooms and
psychiatric hospitals. Individuals will be encouraged to voluntarily
commit, if indeed this is seen as the most appropriate level of care
and the State will fund both voluntary and involuntary commitments. A
past State practice was to fund only involuntary commitments and many
individuals were not even provided an opportunity to voluntary commit
to treatment, which is a huge infraction on their rights and presents a
barrier to empowerment. The effort to re-vamp this law has not come
without objections from the trial lawyers and a protection and advocacy
attorney, since, as a compromise, an immunity clause is in the draft
legislation for emergency doctors, psychiatrists and credentialed
mental health screeners. It is hard to predict if this policy change
will be successful, since it has strong lobbyists on both sides of the
argument. However, Bryce Hewlett, executive director of the Delaware
Consumers in Recovery Coalition has stated, ``any loss of civil rights
for any amount of time is unacceptable, but we've decided to support
this bill because it takes so many steps in the right direction.''
Meaningful reform must evaluate both operational and policy
practices must be encompassing across the system, inclusive of the
entities that support the typical population and develop procedures
that encompass reasonable accommodations beyond structural, tangible
accommodations. We need to evaluate accommodations for the class as
well as for each individual, to assure equality of opportunity, full
participation, independent living and economic self-sufficiency.
iv. a model for statewide reform
As a State, we are committed to making the mandate of ADA and
Olmstead a reality. As a State, we are not only focused on supporting
individuals moving out of DPC and into the community, but are actively
accessing all within our State facilities and asking if they want to
return to their community and are assisting them to do so. DHSS is
working with an independent agency to perform this assessment and
providing education to the residents on ADA and Olmstead. We also
continue to assist individuals in their desire to move from
institutional settings to the community under the Medicaid Money
Follows the Person program and our Journeys program. In addition we are
working with hospitals and have created a diversion team that provides
support to any entity that is evaluating a long-term care need. Our
goal is a community first approach to care and returning individuals to
their home environments or providing supports within the least
restrictive environment. This recently developed service is the Care
Transitions Program, and falls under the umbrella of the Delaware Aging
and Disability Resource Center (ADRC). The program extends community
living for individuals who are in the community or in the hospital and
are seeking admission to one of the State long-term care facilities.
The goal of the Care Transitions Program is to: (1) extend
community living for individuals who are at high risk for nursing home
placement by mitigating immediate risks and stressors that are
prompting a move to a nursing home; (2) create a flexible spending pool
to facilitate access to services and products. We initiated the
diversion teams in February 2011 and since that time, 86 percent of
those referred to facility-based care have been diverted back into the
community with appropriate supports. It is anticipated that this
percentage will increase as we evaluate those situations that were not
able to be diverted and initiate a community-based structure to address
these issues, especially if we find they are common across the
population requiring facility-based care.
The Money Follows the Person Demonstration (MFP) ``Finding A Way
Home'' Program, is a special project funded by the Federal Government
and the Delaware Department of Health and Social Services (DHSS)
Division of Medicaid and Medical Assistance (DMMA). The MFP Program is
available to assist eligible individuals that choose to participate in
moving from an eligible Long Term Care (LTC) facility, (nursing home,
Intermediate Care Facility for Developmental Disabilities ICF/DD) to an
eligible residence in the community with available community services
and supports.
The Nursing Home Transition Program is State-funded and the overall
goal of the program is to identify, inform and assist nursing home
residents, who are not Medicaid-eligible, who want to move to a
community-based setting. The program offers individualized case
management to accomplish this goal. To date, both of these programs
have supported 177 individuals in facility-based care back into their
community. Currently, there are 58 individuals awaiting transition from
facility care within the Money Follows the Person program. Currently
MFP does not pay for home modifications until a participant is
discharged home. This leaves people in a potentially unsafe situation
if they cannot get in and out of the home without a ramp or other
modifications. This also socially isolates people as they cannot leave
their home for church, shopping, employment or other community outings.
In our Medicaid program, we are changing the manner in which we
deliver services to our long-term care population and those eligible
for both Medicaid. Individuals in need of long-term care services
require the greatest level of care and, therefore, are the most costly
to serve. On April 1, 2011, we began utilizing an integrated long-term
care approach that enhances and builds community supports and options,
fully develops a continuum of available services, and so better
contains cost while providing the market with what they desire. More
importantly, it will more effectively support participants' desire to
remain in the community. As the leader in the department, I have a
standing monthly meeting with our Managed Care Providers and the
Medicaid leadership to ensure that the purpose of the program is to
develop enhanced community options and not merely for cost containment.
I continue to outreach to the advocacy and consumer organizations to
ensure that the program is indeed creating a community-based system of
support and wish to ensure this is successful for those who access the
system.
In the area of substance abuse, mental health, disability and
aging, we know that the market is in need of service and support
enhancements that promote community-based care. We are also working on
measures that would divert individuals from prematurely entering
facility-based care through a more comprehensive universal effort in
effective discharge planning, practice and the creation of State
diversion teams that work with hospitals, Adult Protective Services and
others who have a need for support but may not require a 24-hour
residential setting. These situations typically led to an automatic
referral to a facility without evaluating community-based support
planning and engaging the State at time of an admission.
In addition, we are working with St. Francis Healthcare, which will
open Delaware's first PACE site in fall 2012. This Program for All-
Inclusive Care for the Elderly provides site-based comprehensive,
coordinated long-term services and supports to Medicaid and Medicare
participants who are 55 and older, require a nursing home level of care
and are able to live safely in the community. This model of care can be
replicated for individuals with disabilities.
The State and the USDOJ also know that for individuals with
serious, persistent mental illness, many have found themselves
interacting with the criminal justice system. The State has created an
across-the-cabinet approach to support those exiting the criminal
justice system and providing the support network 6 months prior to any
release. Known as the I-Adapt (Individual Assessment and Discharge
Planning Team) Coalition consists of the Departments of Correction,
Health and Social Services, Labor, Education and the State Housing
Authority. The purpose of the I-ADAPT teams is to coordinate local
efforts to support individuals exiting the Delaware Correction system
and to develop relationships between service providers and government
and build sustainable community supports and buy in for the State's
reentry efforts.
v. fiscal security and empowerment
Up until now, the focus of ADA/Olmstead has primarily been on
expanding housing options (home, apartments, and independent living
options with necessary supports). However, underlying support for full
community participation must be a focus on financial capability and
advancing ``economic self-sufficiency.'' Without attacking the
underlying issue of poverty, quality of life choices are diminished. We
know poverty impacts adversely mental and physical health, limits
community participation, and affects adversely self-concept and others'
perception of one's status and value. The next generation of innovation
has begun in Delaware and also is being initiated in cities such as San
Francisco and New York City. It is the design and implementation of
financial empowerment strategies embedded in social and human service
delivery.
The Olmstead Community Integration Mandate compels us to attack
poverty and financial instability through financial coaching as part of
an individual's Medicaid support plan. Providing financial education
and counseling that explores new options for employment (income
production), savings (income preservation), and safeguarding and
building assets can give our most vulnerable citizens with disabilities
hope and goals that will enhance ``fuller community participation.''
There is no roadmap out of poverty. However, State Medicaid re-
balancing of resources to meet Olmstead requirements can use a new lens
to design individualized supports for working age adults with
significant disabilities. CMS recognizes that community participation
must include pathways to advance economic self-sufficiency. Financial
coaching and financial empowerment can stabilize individuals and
families and raise expectations and results about quality of life
experience.
In Delaware, we will use our government infrastructure (Medicaid,
Vocational Rehabilitation, Education, Social Services, and Labor) to
reset the focus to change thinking and behavior about financial
capability through an integrated system of supports that enhance
financial empowerment skills and outcomes. We are calling this the
$tand By Me initiative: a partnership between DHSS and the United Way
of Delaware. The National Disability Institute is working on site in
Delaware to integrate financial empowerment as part of our collective
service delivery system.
What separates people with disabilities from the rest of the
population is financial security. The majority of individuals with
disabilities are of extremely low income which further disenfranchises
and disempowers the population.
Traditionally, State programs have provided support for basic needs
and emergency services for low-income residents. In recent years, a
shift in national perspective has moved leadership in major American
cities and the Federal Government to pursue strategies which promote
self-sufficiency. By providing low-income Delawareans with the tools
and support they need to take charge of their financial lives, the
cyclical dependence on benefits will be reduced, which will reduce
investments for benefit programs for the State and the negative sense
of self created by dependence for the clients.
vi. need for an ada/olmstead outreach campaign
I believe we need ADA/Olmstead Ambassadors throughout the States to
promote the premise behind the civil rights movement and institute a
broad education campaign. States must incorporate this awareness
throughout the delivery system and in all areas of the Cabinet to fully
support the civil rights of individuals with disabilities as a core
value.
Delaware's Court Monitor, Dr. Robert Bernstein noted the following
in his first 6 month report to the Court:
``The Federal laws that are its basis have been around for
far longer than the settlement agreement; the ADA was enacted
over 20 years ago, and the Olmstead decision was rendered over
a dozen years ago. Despite the fact that these Federal laws
have enormous implications for people with SPMI and for how
public mental healthcare is delivered, and notwithstanding
numerous trainings by the State over the years, the Monitor
found a widespread lack of knowledge about the principles of
the ADA, their crucial implications for people with SPMI, and
how they relate to public services. Senior staff members have
an understanding of the settlement agreement and underlying
civil rights laws. However, just a step or two below leadership
positions, it is apparent that there is often only a passing
familiarity with the ADA, the settlement agreement, and their
requirements. This is particularly significant because it is in
these settings, rather than in the offices of management, that
decisions about services and interventions for specific
individuals are made. Perhaps most poignant is that
interactions the Monitor has had with consumers suggest that
they are unaware of their own civil rights under the ADA, let
alone the fact that the State has effected an agreement with
DOJ.''
``It is obvious that individuals who are charged with
implementing the settlement agreement and those who are
intended beneficiaries should be well-versed in its
requirements. It is also important that for the settlement
agreement to represent something beyond a laundry list of
prescribed actions, stakeholders need an appreciation of the
underlying values. It is the Monitor's impression that a lack
of basic knowledge about the ADA and Olmstead has sustained
providers, courts and others in unquestioningly making
decisions that perpetuate segregation, undermine self-
sufficiency, and even result in coercive practices.''
In closing, permit me to share with you my early lesson on
inclusion:
My path here today began when I was 12 years old, when a
young neighbor, Mike, who had an intellectual disability,
ventured out into our community to befriend us. What Mike
wanted was to be included with his peers and be a part of our
group. What he encountered was ridicule at his expense. The
memory still weighs heavy on my mind and heart. I didn't tease
Mike, but I did nothing to stop the others. That haunting look
on Mike's face changed my life forever, and I committed myself
to working toward a system that educates and promotes diversity
and inclusion. Mike on the red bike taught me my first lesson
on the value of inclusion. I saw Mike a few years back and he
told me that he now drives a car, works at a farmers market and
is married. He is an ordinary Delawarean, a full participating
community member and was smiling broadly. I told him that he
was also a great teacher.
Thank you for this opportunity to testify and I look forward to
your questions.
The Chairman. Thank you very much, Secretary Landgraf.
Commissioner Baugh.
STATEMENT OF ZELIA BAUGH, COMMISSIONER, ALABAMA DEPARTMENT OF
MENTAL HEALTH, MONTGOMERY, AL
Ms. Baugh. Thank you. It is an honor to be here today. I
really appreciate it, and so does the State of Alabama.
In 1970, there was a landmark case that began in Alabama.
It was called the ``Wyatt v. Stickney'' case. That case set the
stage for individuals with mental health problems to have
access and right to humane treatment. And in the settlement
phase, which started in 1999 in Alabama and continued until
approximately 2003, certain conditions were set forth in the
settlement. As a result of that settlement, the State of
Alabama has been committed to community integration of people
with all disabilities.
We have systematically downsized our State institutions in
the State of Alabama starting in, actually, 2003 with the
closure of several developmental disability hospitals, as well
as a few State psychiatric hospitals. Last March, Governor
Robert Bentley from Alabama and myself made the decision to
close the Partlow Developmental Center, which was our last
institution for persons with developmental disabilities. We had
approximately 151 consumers living in that State institution
that the Governor believed wholeheartedly could live in
community integrated settings. That was the right thing to do
for the patient and the right thing to do for an Alabamian. As
a result of that, we closed the Partlow Developmental Center by
December 28, 2011.
Since that time, the individuals that we have moved from
those facilities have enjoyed integrating into community-based
settings. We believe that virtually all people with
disabilities, even severe disabilities, can live in their own
apartment or home, have a job with employment supports if
needed, and be engaged with family, friends, and their
community.
We have had success in Alabama. Thousands of people have
moved from State institutions to community settings, and people
who would otherwise have been served in State facilities are
now being served in community settings.
Alabama has made progress in good budget times and in bad
budget times. Currently, our State budget is challenged at this
moment with the recession that we are in. As a result of that,
we have had significant financial cuts made to the Department
of Mental Health, as well as other State agencies. And we have
deliberately and thoughtfully reallocated funds from
institutions to the community as a way to deal with the budget
cuts, and also as a way to move people out of an institutional
setting into a community-based setting.
I believe that States can make significant progress in
complying with Olmstead without huge, new sums of money. In
Alabama, we have been able to prove that thus far.
I work for a Republican Governor in a Republican State, and
this is a bipartisan effort. Our Governor is very supportive
because it is the right thing to do for Alabamians that are
living in large institutional settings, and it is also a cost-
effective measure for us as well.
It currently costs the State of Alabama $150,000 per year
to keep one patient in a State psychiatric hospital. That is
100 percent State dollars. If we move that individual into a
community-based setting, we can keep that individual in a
community-based setting for $60,000 or less per year, and be
able to drawdown Federal dollars on top of that. So as you can
see, it is not only a good decision clinically for individuals,
but it is also a sound business decision in these times of dire
fiscal constraints.
For years, the Wyatt case set the agenda in Alabama. Our
current efforts have grown out of Alabama's own commitment to
community integration. To make Olmstead a reality, we have to
change the expectations and use funding differently. Alabama
uses an individualized service planning process, but our focus
is on identifying the services and individual needs to be
successful in the community. Funding has to be flexible enough
to allow providers to meet identified needs.
Change can be hard when it requires State employees and
private providers to behave in new ways. We try to carefully
explain our priorities and the reasons for them, and engage
stakeholders in planning and give them a stake in our success.
We try to build a consensus and move forward.
When we announced our decision to close the Partlow
Developmental Center last March, we met a lot of resistance
from local legislators, probate judges, as well as the sheriff
and police departments. And, in particular, a lot of pushback
from family members and loved ones of individuals who were in
Partlow because they were concerned about how their loved one
would be treated, and the quality of care that is being
delivered to those individuals.
We have partnered with the Alabama Disabilities Advocacy
Program and we have a very strong partnership with them, and
they actually are part of our quality continuum of care as an
outside agency making sure that the quality of services
delivered to those individuals are of the highest that they can
be. So some of our challenges have been stakeholder buy-in from
families, communities, legislators, and law enforcement
officials.
Appropriate housing and providing networks, especially in
cases of behavioral and medical needs, have also been a
challenge to make sure that we have the appropriate community-
based resources available for an individual to live fully in
the community.
Some of the other challenges that we have experienced as
part of our downsizing have been the stigmas related to
individuals with mental health problems, as well as
intellectual disabilities and other developmental disabilities,
as well as physical.
We have received a lot of NIMBY behavior from communities
when we made the decision to close our Partlow Developmental
Center because they did not want individuals in their backyard
thinking it would decrease their property values and increase
the crime rate, which that can be further from reality for the
people that we serve.
Funding has been a challenge as well because when we are
thinking creatively and out of the box and, ``How can we do
this with less?'' Or, ``How can we maximize other areas of
funding?'' One of the key opportunities, we believe, to assist
us and other States is flexibility in funding, and be able to
have those challenges and opportunities with not having to be
as tied to one certain location or one certain provider with
regards to Federal and/or other State funding, and allow the
flexibility.
Our Federal policy level, we are continuing to support and
encourage Olmstead implementation. Some of the challenges or
opportunities that we see is creating incentives, especially
through the Medicaid program such as the 1915(i) State plan. We
believe that that is giving the State of Alabama an opportunity
to be more creative and seek out more Federal dollars, and
maximize those dollars to create community settings, expanding
technical assistance offered to States.
Again, I want to applaud Mr. Claypool and the other Federal
agencies for their cooperation at the Federal level because it
does play over into the States and our ability to access
resources or best practices from the Federal level.
In closing, I would like to say that this has been an
interesting experience, thus far. I was appointed January 2011
when Governor Bentley was sworn into office, and it has been an
honor and a privilege to serve with Governor Bentley because he
is extremely supportive of inclusion, and giving opportunities
for every individual.
I want to leave you with a story of when we closed our
Partlow Developmental Center, which we are the first State in
the South to close all of our developmental centers.
We moved a gentleman into a two-person home, and he went to
church with his caretaker, and he started crying in church. And
the caretaker and other church members were concerned about
this gentleman, asked him what was wrong, and he said that he
was crying because he was happy, because he never thought he
would be able to go to church again.
It is the simple things that many of us take for granted
that people with disabilities have to struggle to get and to
me, that is where the change happens.
Thank you very much.
[The prepared statement of Ms. Baugh follows:]
Prepared Statement of Zelia Baugh
executive summary
In 1999, the Alabama Department of Mental Health (ADMH) created a
strategic plan that resulted in the settlement of the 30-year-old Wyatt
v. Stickney lawsuit. That plan became ADMH's designated Olmstead plan.
Since the implementation of the Wyatt settlement agreement, ADMH has
further planned and executed numerous major initiatives that effectuate
the letter and spirit of Olmstead.
Regarding services for people with intellectual disabilities, ADMH
settled a waiting list lawsuit by developing more well-defined and
noticed due process procedures relating to denials and/or delays in
granting eligibility and/or services to people with ID. The settlement
supports the proposition that Alabama may cap its home and community-
based services waiver programs and operate a waiting list serving
applicants by priority based upon their levels of severity and emergent
needs. In addition, with the closure of the W.D. Partlow Developmental
Center in December 2011, Alabama became the first State in the South to
achieve the milestone of closing all public institutions for people
with intellectual disabilities and instead serving all eligible
individuals in home and community-based waiver services.
ADMH has also enacted a systematic and inclusionary plan to reduce
levels of institutional care and expand access to community-based
services for individuals with mental illnesses. Through extended-care
transitions, acute-care transitions and facility closures, ADMH has
demonstrated less reliance upon State psychiatric inpatient services by
shifting funding and focus to less costly, but more effective community
services and supports. Likewise, funding continues to be dedicated for
community integration and service expansion efforts, and the department
has worked with other State agencies to expand services. Further
efforts to provide a better quality of life in the community for both
individuals with mental illnesses and intellectual disabilities include
collaborations on several housing and employment initiatives.
ADMH has experienced three main challenges in its efforts to shift
services to community settings: securing stakeholder buy-in,
identifying and developing resources within provider organizations to
serve persons with significant behavioral challenges or multiple
medical needs, and negative stigma. While ADMH has developed strategies
to overcome these challenges, long-term efforts will be needed to
ensure continued success. Additionally, decreased funding to Medicaid,
proposed cuts to medication coverage and optional health care services,
and more collaboration between Federal and State levels in meeting
Olmstead goals are areas of great concern and need. Ultimately, ADMH is
proud of its large-scale initiative to provide community-based care for
Alabamians and ushering in a new era of individuals enjoying inclusive
lives in their communities.
______
introduction
In 1999, the Alabama Department of Mental Health (ADMH) created a
strategic plan that resulted in the settlement of the (at the time) 30-
year-old Wyatt lawsuit. That agreement became ADMH's designated
Olmstead plan. ADMH substantially complied with the provisions of the
settlement over a 3-year period, resulting in the end of this landmark
lawsuit that, among other things, was a precursor to the Americans with
Disabilities Act that was later construed in the Olmstead case. Since
the implementation of the Wyatt settlement agreement, ADMH has further
planned and executed numerous major initiatives that effectuate the
letter and spirit of Olmstead.
For example, among other things, the Wyatt settlement required a
minimum of 300 beds in extended-care psychiatric hospitals and 300
people residing in developmental centers (intermediate care facilities
for people with intellectual disabilities, i.e., ICF/ID) be closed and
the individuals placed in community-based settings, respectively. ADMH
deliberately did not agree to close any specific facility that it
operated. However, as it moved individuals to community-based settings,
the department decided on a comprehensive consolidation plan to close
three developmental centers, all three nursing homes, co-locate one
psychiatric hospital with another, eventually close the relocated
hospital and establish community services support teams for ID
residents.
plans and initiatives: division of developmental disabilities
Before the Wyatt settlement agreement could be implemented, another
lawsuit was filed on behalf of individuals with intellectual
disabilities who were already living in community-based settings, but
who sought Medicaid home and community-based services waivers. Once
Wyatt was settled, and after some limited litigation, the department
settled this ``ID waiting list case'' by incorporating more well-
defined and noticed due process procedures relating to denials and/or
delays in granting eligibility and/or services to people with ID. The
settlement supports the proposition that Alabama may cap its home and
community-based services waiver programs and operate a waiting list
serving applicants by priority based upon their levels of severity and
emergent needs, as it has designed.
Recently ADMH assessed the remaining individuals being served at
its last intermediate care facility for people with intellectual
disabilities (ICF/ID), the W.D. Partlow Developmental Center, and
determined that all of its residents would be better served in more
community-integrated environments. Therefore, in March 2011 the current
ADMH commissioner, Zelia Baugh, and Governor Robert Bentley decided to
close Partlow and instead serve all eligible individuals in home and
community-based waiver services throughout Alabama. At the time of the
closure announcement, 11 other States had closed all their public
institutions for persons with intellectual disabilities, and Alabama
became the first State in the South to achieve this milestone when the
center officially closed on December 28, 2011.
plans and initiatives: division of mental health & substance abuse
services
As a result of the Wyatt ``right to treatment'' litigation and in
response to the Olmstead ``integration mandate,'' ADMH's Division of
Mental Health & Substance Abuse Services has been an active participant
in Alabama's systematic and inclusionary plan to reduce levels of
institutional care and expand access to community-based services.
Upon the inception of the Home and Community Based Services
Expansion Project, ADMH was a member of the Olmstead Planning Core
Workgroup established by the lead agency, the Alabama Medicaid Agency.
The workgroup comprised of State agencies, consumer and advocacy
groups, and other stakeholder representatives was charged with
designing a 3-year strategic plan for expanding home and community-
based services. Through the Wyatt settlement agreement, ADMH was
required to implement a statewide community education plan, reduce
institutional levels and develop more community options. Several
workgroups comprised of ADMH administrators and hospital staff,
consumer and family members, public and private mental health
providers, and advocacy groups were established to form the Wyatt
Implementation Plan. This Wyatt plan and the 3-year Olmstead plan
converged to create the roadmap to drive a reduction in the use of
State psychiatric institutions and expand community service options.
The converged plan supported the implementation of a census
reduction model in which the care of individuals housed within the
State's extended-care wards would be transferred to the community
provider network. This resulted in a significant expansion of
residential services, many of which reflected the development of new
``specialty,'' and small capacity (three bed) residential models to
address the unique needs of extended-care residents, such as medical
and forensic needs. Expert training and consultation was also provided
through Olmstead funds and other funding sources to include deaf
interpreter training, person-centered discharge planning and dual
diagnosis services.
ADMH has demonstrated less reliance upon State psychiatric
inpatient services by shifting funding and focus to less costly, but
more effective community services and supports. Strides to better serve
consumers outside of inpatient settings have continued beyond those
prompted by the Wyatt settlement, leading to a statewide reduction in
hospital census as well as closures of State psychiatric facilities. As
an example, since 1971 the census at Bryce Hospital, Alabama's oldest
psychiatric hospital, has dropped from more than 5,000 patients to less
than 240 in 2012. Other activities that have followed Wyatt initiatives
include:
In 2007 regional planning groups made up of consumers, family
members, mental health providers, and other stakeholders developed
plans for new services and protocols designed to transfer the acute-
care function from State hospital admission units to local community
settings. These efforts resulted in a number of residential programs
obtaining ``designated mental health facility'' status (community-based
psychiatric units or hospitals that may serve committed patients
outside of a State-run institution), the purchase of local inpatient
care, increased psychiatric time, development of a Psychiatric
Assessment Center in an area of high State hospital admissions and the
establishment of mental health service teams consistent with ``best
practices,'' such as Assertive Community Treatment teams, Adult In-Home
Intervention teams and Bridge teams.
In fiscal year 2009 extended-care residents at Bryce and Searcy
were evaluated to identify needed community services to permit
discharge from those hospitals. In addition, residents living in
community residential programs for over a year were evaluated to
determine services needed to promote independent living in community.
The planning process continued into fiscal year 2010 and was
incorporated into planning for the sale of Bryce Hospital to the
University of Alabama and the subsequent construction of a smaller,
state-of-the-art hospital. Final plans were developed and approved by
the Bryce Consumer Transitioning Work Group, the Mental Illness
Coordinating Subcommittee (both incorporating a wide range of
stakeholder representation) and the commissioner.
The community provider network in Alabama's MI Regions 2 and 4
established boards for the purposes of promoting service coordination
and monitoring of project goals at a regional level. New services began
in June 2010 in Region 2 (north central Alabama in the Bryce Hospital-
served area) and in August 2010 in Region 4 (south Alabama in the
Searcy Hospital-served area). The plans included the development of a
variety of community services such as an increase in permanent
supportive housing units; augmenting current residential homes;
establishing a Medication, Observation, and Meals (MOM) apartment
model; an increase in small capacity (three bed) homes; the utilization
of Peer Bridger Teams; an increase in Peer Support Services and the use
of flex funds.
Another part of ADMH's plan for consumer independence and inclusion
is the closing of two psychiatric hospitals by the end of this calendar
year. To prepare for closure at Greil and Searcy Hospitals, a census
downsizing has been underway for the past year. While downsizing is a
working goal for ADMH, the feat would not be attainable without
partnerships the department has made with community-care providers and
private healthcare facilities. By closing these hospitals and
successfully overseeing all transfers of consumers, ADMH will provide
the best health care available and do it in a way that is financially
responsible.
Funds continue to be dedicated for community integration and
service expansion efforts though block grant dollars, general State
funds and other grant resources. Throughout the years, community
integration and services expansion have been the focal point of the
SAMHSA Block Grant goals and targets for mental health services. The MI
Planning Council, which is mandated to approve the Mental Health Block
Grant goals, has supported this process, and their guidance has steered
enhancements to this process to expand into peer-directed care that is
strength-based and person-centered. In fact, over a decade ago, ADMH
partnered with the MI Planning Council to apply for the Olmstead
stipend, which is provided to States on an annual basis. The MI
Planning Council established guidelines for the submission and approval
process for proposed uses of the stipend. Funding is dedicated to
facilitate State's efforts to carry out the values expressed under the
Olmstead decision of promoting community integration for adults with
serious mental illnesses and/or co-occurring substance use disorders
and children with serious emotional disturbances.
Additionally, ADMH is currently working with the Alabama Medicaid
Agency to expand services through increased rehab options, targeted
case management and the 1915-i State plan amendment (SPA). The 1915-i
SPA involves needs-based criteria that require an individual to have a
variety of risk factors and a functional need for assistance with
community living skills, which cannot be met by an outpatient clinical
service.
employment & housing programs
ADMH's Division of Developmental Disabilities is working with the
Alabama Medicaid Agency to propose amendments to its existing HCBS
waiver programs to de-emphasize day services and emphasize more
supported and integrated work services. ADMH is hopeful that resolution
to these amendments can be achieved by summer 2012. Additionally, the
Division of Mental Health & Substance Abuse Services is also reviewing
ways to shift from day programming to employment services assisting
consumers in achieving maximum quality of life, independence and self-
worth.
To foster more housing opportunities for people with serious mental
illnesses or intellectual disabilities, ADMH embarked upon a 2-year
partnership with the Alabama Housing Finance Authority to prioritize
portions of housing developments financed through a combination of low-
income housing tax credits and the Home Investment Partnership Program.
These plans were approved by HUD and netted up to 15 percent of housing
units developed through funding from these two programs for the years
2000 and 2001. Under this initiative, people with mental disabilities
have a priority for occupancy up to the total of reserved units and
when they vacate the premises, that priority remains. If after working
with local mental health service providers and ADMH, housing managers
cannot find a person with mental disabilities to occupy the premises,
other tenants may occupy that small, integrated percentage of these
units. ADMH also created a housing consultant/advocate position to
assist individuals with issues that may arise with the managers of
these units (and others) because of problems they may have with
landlords related to their illness or condition. In addition, ADMH is
currently working with HUD, AHFA and housing developers on pilot
demonstrations to provide more housing options in integrated settings
for individuals.
challenges
ADMH has experienced three main challenges in its efforts to shift
services to community settings. The first challenge was securing
stakeholder buy-in. While most consumer and advocacy groups supported
the idea, much resistance was met from legislators, probate judges and
law enforcement. Likewise, some families expressed concern that their
relatives could not live and work in the community and that somehow
they would be sacrificing safety by not living in a congregate setting.
ADMH held regional meetings with these stakeholders to educate them
about the closure process and listen to their concerns, and even made
changes to meet their needs. Additionally, much effort went into
assuring families that their relatives' needs and safety could continue
to be met at or above the level of institutional care.
Also challenging was identifying and developing resources within
provider organizations to serve persons with significant behavioral
challenges or multiple medical needs. ADMH held specialized trainings
with interested providers about enhancing their services in order to
serve these individuals. However, as institutions have closed and
budgets have shrunk, the ability of the State, with its limited
resources, to provide ongoing training to provider organizations to
assist them with professional growth has been difficult.
A third challenge stems from the negative stigma sometimes directed
toward people with mental illnesses and intellectual disabilities.
NIMBY-based (``Not In My Backyard'') opposition across the State and
country, stigmatic language and incorrect assumptions about violent
tendencies are all examples of stigma. ADMH believes part of providing
quality services to the people it serves includes public education and
stigma reduction efforts, and the department regularly implements
public education strategies. For individuals with intellectual
disabilities, these efforts bring inclusion in the community closer to
reality. For those with mental illnesses, giving the facts about these
illnesses encourages people to get treatment or help others they know
seek treatment. It also enhances long-term recovery, and increases
understanding and acceptance from friends, family members, peers and
society as a whole.
needs
There is a concern that with decreased funding to Medicaid, there
will be a decline in the overall quality of health care available to
persons currently served through the HCBS waivers. Individuals already
have limited choices in healthcare providers who accept Medicaid. With
proposed cuts to providers, their choices could become more limited.
Also, with proposed cuts to medication coverage and optional health
care services, people's quality of health, safety and well-being could
be further complicated.
Additionally, more collaboration between Federal agencies in
consolidating and streamlining mandates and access to Federal programs
that meet the initiatives of Olmstead efforts would be helpful.
Currently States have to dedicate extensive resources to seek out
Federal grants and programs that would help them meet their Olmstead
goals. Improved communication between the Federal and State levels
could help ensure States meet and exceed these goals.
close
The Alabama Department of Mental Health has launched a large-scale
initiative in providing community-based care for Alabamians. Not only
has the department enjoyed success, but more importantly, individuals
who have transitioned to community-based care have reported being more
satisfied with services and more connected with their friends and
families. The era of institutionalization is over. Instead, a new era
has begun with individuals enjoying inclusive lives in their
communities.
Attachment
admh community integration timeline
December 2011--W.D. Partlow Developmental Center closed
July 2009--Alice Kidd Nursing Home closed
October 2004-- Thomasville Mental Health Rehabilitation Center merged
with Searcy Hospital
April 2004--A.P. Brewer-Bayside Developmental Center closed
January 2004--J.S. Tarwater Developmental Center closed
December 2003--Wyatt Case closed
October 2003--Lurleen B. Wallace Developmental Center closed
September 2003-- Thomasville Mental Health Rehabilitation Center
relocated as a separate entity on the Searcy Hospital campus; S.D.
Allen Nursing Home closed
August 2003--Claudette Box Nursing Home closed
January 2000--Wyatt settlement agreement
June 1999--Olmstead decision
April 1996--Eufala Adolescent Center closed
November 1996--Glenn Ireland, II Developmental Center closed
October 1970--Wyatt case filed
The Chairman. Well, thank you very much, Commissioner
Baugh, for a very profound statement.
And now we will turn to Ricardo Thornton. Mr. Thornton,
welcome to the committee. Please proceed.
STATEMENT OF RICARDO THORNTON, SR., FORMER RESIDENT OF FOREST
HAVEN, WASHINGTON, DC
Mr. Thornton. Thank you. First let me say, good morning,
Senator Harkin. Good morning to you and to the Committee on
Health, Education, Labor, and Pensions. I am very excited. I am
honored to be here today.
My name is Ricardo Thornton. I am here representing the
92,000 people who are still living in institutions in large
public and private facilities. For people with intellectual
disabilities and for all of the people like me who used to live
in institutions.
With me today is my wife Donna. I lived in institutions all
of my childhood. I was a resident of D.C. Village and then in
1996, I went to Forest Haven, the DC institution for people
with intellectual disabilities. My wife, my brother, and my
sister also lived at Forest Haven.
For many years, no one told me that I had a brother or a
sister there. I did not get to think for myself. The staff
thought for me. They made decisions for a long time and no one
expected anything of me.
At Forest Haven, where I used to go, and like I said, I
lived there, went there. I was in a cottage. Each of the
cottages had names. If you see the trees, like the oak tree,
the maple tree, those types of names. I was at Oak Cottage. And
there were lots of guys. I was learning basic skills there.
I have seen lots of abuse. It was sad, but sometimes you
have to walk away from it. You could not snitch on them because
you would get in trouble, but it was sad to see and it hurts
me. And then when I had a relationship with my sister, later on
I did have family members who would come out to Forest Haven to
visit us, and it was sad to me because they came out, and they
would get on the ball field, and say, ``We have all this
food.'' And they showed a lot of love, but I had no idea who
they were and I considered them as strangers.
Later on, I had developed a better relationship to know who
my family was, that was how I got to know my sister Earline and
we did a lot of fun stuff there. Unfortunately, she passed at
the wrong time, and no one had an explanation on what really
happened. She died in a cottage there. And everyone wanted to
know what I was going to do next. And all I was told was, ``She
had a heart attack. Let's leave it at that.'' Too many
incidents like that happened and there are no defense with
that.
But the good thing was I promised her before she died that
I would advocate, and I would go out and advocate for her and
people who cannot advocate for themselves. I will continue to
advocate. So I wanted to keep that promise. That is why I am
here today at the Senate.
I was very excited to see my wife Donna who also lived
there. Donna had a favorite swing that she used when problems
were so bad, she would go to her swing and swing. And sometimes
she would get into trouble for doing it, and she tells a story
about that, but I just thought it was fascinating to see that
she had a dream. And her dream was she wanted to one day get
out, get into the community, have a husband, have a beautiful
family, and a wonderful life just like everyone else.
We did get out. Forest Haven closed, and I am going to be
very brief because of the time, Forest Haven closed and we got
out. I moved into my first group home. I was excited. People
that left Forest Haven, you know, when you get into the
community, we are excited. We cannot wait to see what is next,
but to find out that we are winding up in a group home that
still has the same institution setting and people did not want
us in the neighborhood. You know, they had a lot of resistance
to us. So what I did was I went to a hearing.
I remember providers coming together for this big hearing
in DC to talk about what is the problem. Why is it that people
do not want us in the neighborhood? What is the big problem?
And I remember going there, and testifying, and I had invited
the council,
``Since you had talked about people with disabilities
so bad, I want to invite all of you to come to my
wedding. We are going to have a handicapped wedding.''
[Laughter.]
We had a wedding and thanks to the staff at the community,
they provided us, got us together with this big program. We had
a beautiful wedding. We had the photographer to come out, and
it was to show people what people with disabilities can do if
you give us a chance to. We had a beautiful wedding.
Later on down the road, we had someone from the
``Washington Post'' who came out. Mike Wallace came out and did
an interview, which was really unique. He took a look at the
institution where we lived. We showed him some of the real bad
things that were happening and we showed him some of the good
things that were happening, and he was just so fascinated with
that.
I have to say that we are in the community. I work at the
Martin Luther King Library downtown. I have been there 35 years
now. My wife works at Walter Reed, and she is now working at
the Army Medical Center, and she has been there 22 years. My
brother now works at Catholic University, and I do not know how
many years he has been there, but they are happy, and they are
excited about being in the community and learning something new
and different.
Many of us, and many of the people that I advocate for, are
really against going to workshops. They really want real jobs,
real opportunity, to get a feel of something different not just
going there doing skills, but they want to use their ability.
So we got a chance to do that.
The other thing we have in our community is we are very
active in our church. We have a church where many come with
disabilities. They play, they sing songs, and they do a lot of
fun stuff. They are a part of the community, and I wish you
could see the growth. It is there. It is really happening.
And I just have to say, Senator, that disability is not a
disability. One of the things I also did was I am very active
in Special Olympics. Thanks to Mrs. Shriver, Ted who is no
longer here, but those people who inspired us to have Special
Olympic competition games. It was not so much about the
competition and competing in the games. Yes, I loved the gold
medals, I loved the silver medal, I loved the bronze medal, but
the one thing I loved most was I did not have to worry about my
label. My label. I was a person, not with a disability, but I
was a person who had abilities, and that is what Mrs. Kennedy
gave us to look at our abilities to achieve and to reach our
goals. And so, I am really thankful for that.
And in closing, it is just saying that I have seen so much
growth within our community. I have seen it around the States.
I see everybody trying to make changes and to turn things
around, but the bottom line is 92,000 people who are still
living in institutions. It is time to get them out of there and
get into the community, so they can be a part of growth, just
like me and my wife Donna.
So Senator, again, I thank you for the opportunity to sit
here and speak today. And again, for me, I have a lot of people
who gave me support, and believed in me, and my community, for
me to achieve the goals I have achieved.
I can go on and on, but I just thank you, Mr. Chairman.
[The prepared statement of Mr. Thornton follows:]
Prepared Statement of Ricardo Thornton, Sr.
summary
With me today is my wife Donna and my son Ricky.
I lived in institutions all of my childhood. I was a resident of
first DC Village and then in 1966 I went to Forest Haven, DC's
institution for people with intellectual disabilities. My wife,
brother, and sister also lived at Forest Haven. My sister died in
Forest Haven and is buried there. I advocate on her behalf and on
behalf of others who cannot speak for themselves.
In the institution, I didn't get to think for myself. The staff
thought for me and made all of my decisions. For a long time, no one
expected anything of me. I got to know some good staff and some really
bad staff. I witnessed abuse, especially of people with severe
disabilities.
I left Forest Haven in 1980. That was a great day! I was in the
first group to go out.
After I left Forest Haven, I lived in several group homes. I
started to date Donna--and then she proposed to me. People didn't think
we should get married but a few people encouraged and believed in us.
So we got married, and later we had a beautiful baby boy, our son
Ricky. We are very proud of Ricky. He graduated from high school, took
a few college courses, is now working part-time, is married, and is the
father of a beautiful baby girl.
I have worked at the Martin Luther King Library in DC for 35 years.
My wife Donna worked for over 30 years at Walter Reed Medical Center
and now works at the Army Medical Center in Bethesda. My brother
William works at Catholic University. All of us pay taxes and make a
difference on our jobs and in our communities. Donna and I serve on
many Boards and committees, and are very active in our church.
When I lived in the institution, no one would have believed that I
could have the life I have today. I couldn't always advocate and do
what I can do now. I had people who believed in me and who supported
me. Some of the best support Donna and I have received has been from
friends. When you live in the community, you make friends and they
support you. You don't have to depend on staff for all of your support,
and you get to support others as well. You develop networks that you
could never have in the institution. I've seen this happen for so many
people, including people with severe disabilities.
I've seen people with severe disabilities who have grown and
accomplished great things given the right support. I hear people say
that some people are too disabled to live in the community but I've
seen people just like the people still in institutions who do so much
better in the community--because no one expects you to do anything in
the institution but survive. People need to have high expectations for
people with disabilities because then they'll give them opportunities
to learn and grow. People don't grow in institutions. There's no such
thing as a good institution. Segregating people is always bad, people
never grow in those places, and are safer and happier in the community.
We can't go back. We can't go back to a time when people are moved
against their will to places where they have no opportunities to learn,
grow, and contribute. We need to keep moving forward. Thank you for the
opportunity to testify today and for your continued support of people
with disabilities.
______
Good day, Senator Harkin and members of the Senate HELP Committee.
My name is Ricardo Thornton. I am here representing the 92,000 people
who are still living in institutions and large public and private
facilities \1\ for people with intellectual disabilities--and for all
of the people, like me, who used to live in an institution. With me
today is my wife Donna and my son Ricky.
---------------------------------------------------------------------------
\1\ Public and private residential settings for 16 or more people,
including State-operated institutions, private intermediate care
facilities, private facilities, and nursing facilities. From Table 5 in
Braddock, D., et al. (2012). The State of the States in Developmental
Disabilities 2011. Boulder, CO: University of Colorado.
---------------------------------------------------------------------------
I lived in institutions all of my childhood. I was a resident of
first DC Village and then in 1966 I went to Forest Haven, DC's
institution for people with intellectual disabilities. My wife, brother
and sister also lived at Forest Haven. For many years, no one told me
that I had a brother and sister. We weren't told that we were related.
In the institution, I didn't get to think for myself. The staff
thought for me and made all of my decisions. For a long time, no one
expected anything of me.
I got to know some good staff and some really bad staff. I
witnessed abuse, especially of people with severe disabilities.
My sister died in Forest Haven. She is buried at Forest Haven, and
I still go back to visit her grave. I promised to advocate on her
behalf and on behalf of others who cannot speak for themselves.
I left Forest Haven in 1980 when I was in my early twenties. That
was a great day! I was in the first group to go out.
I lived in a few different group homes. Living in the community was
a big adjustment. Some people looked at us differently. The community
didn't want us there. There was trash in the alley and the neighbors
thought we put it there until they saw that we were there cleaning it
up. At first, in the group homes, people treated us in some of the same
ways as when we were in the institution. I wanted my own bank account
but staff didn't want me to manage my own money, so I got in trouble.
While I was living in a group home I started to date Donna--and
then she proposed to me. People didn't think we should get married but
a few people encouraged and believed in us. So we got married, and
invited everyone we knew to the wedding. Later, we had a beautiful baby
boy, our son Ricky, 2 lbs 11 oz. We are very proud of Ricky. He
graduated from high school, took a few college courses, is now working
part-time, is married and is the father of a beautiful baby girl. We
were written up in the Washington Post and got to be on 60 Minutes.
When I lived in the institution, no one would have believed that I
could have the life I have today--married with a son and granddaughter,
a good job for 35 years, a driver's license and car, and opportunities
to speak on behalf of Special Olympics International, which has taken
me to places like Johannesburg. It's important to have people believe
in you and to expect that you're going to succeed. People need to have
high expectations for people with disabilities because then they'll
give them opportunities to learn and grow. People don't grow in places
like Forest Haven and in other institutions.
I have been working at the Martin Luther King Library for 35 years,
as an employee of the DC government. I started as a volunteer, then as
a part-time worker, and then full-time. My wife Donna worked for over
21 years at Walter Reed Medical Center and is now at the Army Medical
Center in Bethesda. My brother William works at Catholic University.
All of us pay taxes and make a difference on our jobs and in our
communities. Donna and I serve on many Boards and committees to make
things better for people with disabilities, and we are very active in
our church.
I couldn't always advocate and do what I can do now. I had people
who believed in me and who supported me--friends and providers. I've
seen people with severe disabilities who have grown and accomplished
great things given the right support. For many people, supports come
through Medicaid which helps people live in the community and get
services such as personal care, transportation, and help learning to do
things like plan and manage their household. I hear people say that
some people are too disabled to live in the community but I've seen
people just like the people still in institutions who do so much better
in the community--because no one expects you to do anything in the
institution but survive.
I love Special Olympics because they encourage us to focus on our
abilities and to show off our abilities, not our disabilities.
Some of the best support Donna and I have received has been from
friends. When you live in the community, you make friends and they
support you in your advocacy, and in raising your son when you have
questions, and when you have to make major decisions in your life. When
you live in the community, you don't have to depend on staff for all of
your support, and you get to support others as well. You develop
networks that you could never have in the institution. I've seen this
happen for so many people, including people with severe disabilities.
When I was in Forest Haven, I had a chance to go to the cottage
that had the people with the most severe disabilities, who mostly
stayed in bed all day. Someone at Forest Haven got a grant so that we
went in, gave people musical instruments and played music while they
played along. They loved it and never wanted to go back into their
beds. When the grant ended, that program ended. If they had lived in
the community, their music would not have stopped and wouldn't have
depended on a grant.
When I left Forest Haven, I was asked to be on the Mayor's
committee that was set up to close it. It was a great day when the last
person left Forest Haven in 1991.
What I've seen is that when people are given a chance to grow and
contribute, they grow and contribute. We ask that you ensure that
people continue to be given chances to have good lives and to grow in
their communities with support. I believe that people can do anything
if they're given the opportunity and support.
We can't go back. We can't go back to a time when people are moved
against their will to places where they have no opportunities to learn,
grow and contribute. We need to keep moving forward.
People invested in me and my wife and brother. When we were in the
institution, we didn't have a voice. We were thought to be incompetent
so no one took the time to teach us things. But people can accomplish
great things with support. Having an intellectual disability doesn't
limit what you can contribute. Being put in institutions limits what
people can do and guarantees that people will be dependent for the rest
of their lives.
Anyone can become disabled at any time. We are people just like
everyone else. The time needs to be over for people to be sent to
institutions because there aren't options in the community or because
people think it's cheaper or more protected. It wastes people's lives
and, in the long run, keeps them from contributing.
There's no such thing as a good institution. Segregating people is
always bad, people never grow in those places, and are safer and
happier in the community.
I'm one of many people who could be here today. People sometimes
say that I'm not like some of the other people with intellectual
disabilities. The only thing that's special about me is that people
believed in me and in my potential to learn in spite of my disability,
and they took the time to help me learn. Please protect people from
places where no one expects anything from them and where they're just
kept alive.
We can't go back. It's time to move forward.
Thank you for the opportunity to testify today and for your
continued support of people with disabilities.
The Chairman. You added an exclamation point to this whole
hearing. It was great. Thank you very much, Mr. Thornton.
In reading your testimony last night, you did not say this,
but I am going to read it. I thought it was very profound. You
said, ``People need to have high expectations for people with
disabilities.''
Mr. Thornton. Absolutely.
The Chairman. High expectations. High expectations,
``Because then it will give them opportunities to learn and
grow. People do not grow in institutions.''
Mr. Thornton. No.
The Chairman. These are your words.
``There is no such thing as a good institution.
Segregating people is always bad. People never grow in
those places, and are safer and happier in the
community.''
Those are very profound words.
I am going to ask you the same question I asked Messrs.
Perez and Claypool at the beginning. We hear from a lot of
families that are concerned. They are in their 60s-70s. They
have an adult child maybe in their 40s-50s. They may be in a
community setting now, but what happens to them later on? There
is a great concern about the safety and well-being of their
family members after they leave an institution.
What do you say to people like that? I mean, your life and
what you have done. What about the safety and the well-being of
people?
Mr. Thornton. Well, I think that we should not look at the
institution as resolving that. I think that we should not think
inside the box, but think outside the box with some positive-
ness. Because I think that families need to be assured that
their children are safe and that they can grow because they are
going to continue to grow with their ability. But if you put
them back, look back at the institution or those types of
settings, they are not going to grow but so much. So you want
to take them out of that and continue to use their ability.
I think that I heard some things about seniors as they get
older, the city does not really have a lot for them. But I
think that if you have senior citizens beautiful buildings, I
am not knocking seniors. I love them. But if you can buildup a
beautiful complex building and all this stuff with them, why
can't we do it for people with disabilities right here in our
community? I mean, we can think outside the box, and I think
that will play a very important role.
I do not think institutions are the key. I think nursing
homes are not the key. Let them be out. Let them be free. Let
them see more and more what the community has to offer, but
think outside the box, not in the box.
Thank you. I do not know if that answered the question.
The Chairman. But that is exactly right. I just have a
couple of questions here before my time completely runs out for
both Secretary Landgraf and Commissioner Baugh.
Could you please comment on how the implementation of the
mental health parity law is impacting Olmstead efforts? This is
a fairly new law, 3 or 4 years old. Are there things the
administration has done or should do on mental health parity
that would assist your efforts? So address yourself to mental
health parity.
Commissioner Baugh, you spoke about that.
Ms. Baugh. Yes, sir. Thank you.
I think that the beginnings and the intent of the mental
health parity and the law has been very important with regards
to Olmstead and access to treatment, and treatment being equal.
For example, an individual that has a pancreatitis attack
may go into the hospital indefinitely. But if you have a mental
health episode, you have to get preapproval and you can only be
in there a day or two. And so the intent of the law with access
to treatment and equality in treatment has been very profound.
However, the actual implementation of it, I think at least
in Alabama, it has been challenging because there has been no
clear cut guidance on minimum requirements for States to meet
with regards to mental health parity.
For example, you get X-amount of benefits for inpatient
stay or different types of things that are important with
regards to mental health parity. And even more important with
regards to Olmstead implementation because right now because of
the disparity with insurance coverage, with regards to
accessing treatment, still many people believe the only place
you can access adequate treatment is in a large State
institution.
And if we are going to truly implement Olmstead and truly
have integration, then individuals should have choice of care,
choice of provider, and choice of treatment. And right now, not
having even a baseline minimum standard, I think, is an
opportunity that could help many States with the full
implementation.
The Chairman. I thought the one point you made in your
statement I wrote down is that you estimated that it cost
Alabama $150,000 per year for an institutionalization, but it
cost $60,000 or less for supportive services in a community.
Has this concept taken hold in Alabama and do people begin
to realize that not only do they save money, they make people's
lives better?
Ms. Baugh. It has, and that is a great question, Senator.
It has taken hold and it is beginning to take hold.
I failed in my initial summary to say that we are also in
the process of closing two more psychiatric hospitals in
Alabama by the end of this calendar year. And we are really
making not only a clinical case for it being the best
treatment, but also a fiscal case. And many people in our State
are finally realizing you actually can get more appropriate
quality and better treatment at the community, and also it
being more cost effective.
Not to negate my employees and our State institutions, they
are wonderful, but the nature and the environment that they
deliver their care is the issue because when you have a large
number of individuals under one or two roofs, and you are
trying to get them to take medications or go take their baths.
I mean, it is all a schedule. And like you said, nobody is
thinking. You do not have to think. The staff did it for you,
and is that really the best environment? And in my opinion, it
is not, not for long-term care.
The Chairman. Well, my time has run out. I have some
followup questions for Secretary Landgraf. I will do that on
the second round.
Senator Enzi.
Senator Enzi. Thank you, Mr. Chairman.
Mr. Thornton, I want to thank you for your testimony. I am
impressed with anybody that has had a job for 35 years.
[Laughter.]
Or 22 years, as you have mentioned your wife had, and that
was even before the Olmstead Act.
How did you come to get that job?
Mr. Thornton. Well, I was at a special education school. I
went to special education, and I went over as a volunteer
training, learning skills on how to do shelving of books and
stuff. And then later on, they had a backlog. I just showed
that I could do more than just do seals all day.
I went there and I got a call to come back. They had a
backlog of books, and they needed some help, and I came in as a
part-time employee. Then ever since then, I have been there.
And what I do is, I keep the Special Olympics Team. I
always say, ``Teamwork makes the dream work.'' So if a part of
your team, we are going to make it work, if they just believe
it. But now, I am reaching out for others, hoping they would
bring more on. There are a lot of us out there.
Senator Enzi. Well, thank you for all the effort you are
doing there.
Mr. Thornton. Thank you, Senator.
Senator Enzi. One of my favorite people, a librarian in
Gillette, WY, is very meticulous in her work, and has never let
me put a book back. And she has also been a very loyal
employee, and done a great job.
For Secretary Landgraf and Commissioner Baugh,
transitioning individuals with disabilities into a community-
based setting requires a focus on a full range of services,
health care, social services. We mentioned transportation,
housing.
It seems that most of the funding historically available to
States for implementing this comes from the Medicaid program
and, of course, the Medicaid program has a required match. Has
this presented an obstacle for your State in transitioning
people with disabilities to this fully integrated community-
based setting? And what can we do to better accommodate that
range of facilities and services?
Ms. Landgraf. Thank you, Senator. That is a great question.
I am very fortunate because the Medicaid program falls
under my leadership at the Department of Health and Social
Services. In addition, all disability services are under our
Department, so we kind of break down those silos in that it
falls within our Department. And our Medicaid program,
actually, we see that as an opportunity to advance inclusion
for individuals with disabilities, and it is how we utilize
that funding. I believe the Commissioner and I both agree that
we need that flexibility.
And relative to Medicaid funding, we need to approach it on
an individualized fashion. Whatever individuals will require in
order to be included within their communities, the funding
should follow that individual, Money Follows the Person, which
enables us to actually transition individuals out of long-term
care facilities is a first step relative to that level of
flexibility.
But we also have to encourage that level of flexibility
across, what I call, across the cabinet. Housing becomes very
critical. We now, along with our State housing authority, have
a voucher program called the State Rental Assistance Program.
When I talked a little bit about in my testimony, people with
disabilities have a further disadvantage in that they are of
extreme poverty level which means if they are to exit or if
they are to maintain a high quality level of life within the
community, they need to be financially empowered in order to
succeed in that.
So we want to use all our Government funding in a way that
it supports people on an individualized fashion across that
domain, not just relative to Medicaid, but also there are other
Federal and State programs that will afford them that access.
Senator Enzi. Thank you.
Commissioner Baugh.
Ms. Baugh. I think the challenge for Alabama right now is
coming up with the match money for Medicaid. I think that we
are applying for many grants through the Affordable Care Act
that is going to assist us with the 90/10 match for the next 2
to 3 years. However after that, looking at sustainability is
where we have great concern.
With regards to match money, we would be happy to take any
match money, Senator, you would like to send our way.
[Laughter.]
Although in this fiscal environment, I am not sure that
that is an option. However, it does present a challenge when
you look at sustainability long term.
Senator Enzi. Thank you, and my time is almost up.
The Chairman. Thank you very much, Senator Enzi.
Senator Franken.
Senator Franken. Thank you, Mr. Chairman.
Secretary Landgraf, Minnesota has a very sophisticated home
and community-based system to support seniors and people with
disabilities.
In Minnesota, people who receive homecare are protected by
a ``Homecare Bill of Rights,'' that guarantees that they will
have the same right to information, and protections against
abuse and neglect, as people who live in nursing homes do, but
unfortunately, this is not the case everywhere.
We know that it is better for everyone--for patients, for
families, and for the Federal budget--when our loved ones can
get the care that they need at home instead of in a hospital.
And I think you will agree that no one should have to worry
that they will not receive the same quality of services in
their communities as they would in a nursing home or a
hospital. And that is why I introduced my Home Care Consumer
Bill of Rights Act which would require all States to develop
similar protections for seniors who receive homecare. But I
wonder if these protections are needed for people with
disabilities who are under 65 and opt to receive community-
based services and support.
So my question is: Is there more we should be doing to
provide people with disabilities the information they need to
make sure that they can make informed choices when they receive
community-based care?
Ms. Landgraf. I will give you a resounding ``yes,'' to
that.
I think, in Delaware we have expanded our long-term care
ombudsman program, which is an advocacy and independent
advocacy program that goes into those particular facilities. We
have expanded that into the community now for that very reason,
and it is inclusive, not only of our senior population, but
also of individuals with disabilities.
The issue we have is that we need to apply more resources
in that area. So individuals have an advocate that is
independent from the system that they can work with as well,
and I think education at any level. I mean, I think Ricardo is
an extreme example of independence and that Ricardo's level of
education and empowerment shows that he is a full participating
member of our society, and he can speak out not only for
himself, but for others.
I believe that inclusion, too, actually protects people
more so than segregation because we build those natural
supports. And we, as a society, have a tendency to actually
look out for one another when we build relationships with one
another, and that happens in the community.
So I believe the protections that you are working toward
for our senior population should, indeed, also include those
with disabilities.
Senator Franken. Thank you.
Commissioner Baugh, you mentioned that you have had some
challenges implementing the 2008 mental health parity law.
What could the Federal Government do to help you fully
implement this law? Has the fact that the administration has
not released a final rule hindered your implementation efforts?
Ms. Baugh. That is exactly the case, Senator, not having a
final rule with very clear cut, basic, federally mandated
requirements of minimum coverage that has to be in any kind of
parity act has been a huge barrier to implementation. The
sooner we are able to have that, I think, the sooner it sets
the groundwork, or a framework, for individuals to be able to
access treatment in settings other than in a large State
institution.
To me, that is a huge step in the direction toward
integration, full integration, having choice of care, choice of
provider, and appropriate resources.
Senator Franken. Thank you.
Mr. Thornton, thank you for your testimony here today. In
your written testimony, you mentioned you have been working at
the Martin Luther King Library for 35 years. We have heard from
some other panelists about the importance of providing people
with disabilities with an opportunity to engage in their
community.
Can you discuss what it means having a job for you and a
mainstream job, not a work-shop job as you mentioned?
Mr. Thornton. It means that I am able to reach some goals
like purchase an automobile. I want to be part of a community
and I can go. We just recently moved into a new home, my wife
and I and my son, who is now a daddy himself.
A question asked to him said, ``What is it like to have a
father and mother who has a disability raise you? What was that
like to you?'' And he told the person, he said,
``You know what? They were just like anyone else.
They loved me. They supported me. They carried me
through hard times when I did not understand, they
worked for me. And they have a support system in place
to help me get along, to get to school.''
He graduated from high school, and that is community.
I educate him a lot. He is probably tired of me giving him
advice. We talk a lot. But I think just a lot of stuff there
and my wife would tell you. She would say, ``Oh, Lord, he is
going to bore him again. Oh, God.'' But it was to teach him
that just because we have a disability does not mean that we
cannot teach you. We go out and find resources that will help
us help explain to you what it is that you deal with. He is a
lot more comfortable with that and confident.
Educating others is the key. I found in the community, as
we educate them and give them stories, that is one of the
greatest things we can give--success stories.
Senator Franken. Well, my guess is that you are a wonderful
father.
Mr. Thornton. It is a lot of work, though.
Senator Franken. I know. I know.
The Chairman. But how is he as a grandfather?
[Laughter.]
Senator Franken. Well, I am hoping----
Mr. Thornton. Thank you.
Senator Franken. To be one myself. No pressure on my kids.
[Laughter.]
Thank you, Mr. Chairman.
Mr. Thornton. Thank you.
The Chairman. Thank you very much, Senator Franken.
Secretary Landgraf, you were present at this full-day
session in Connecticut that we had a few weeks ago.
Your Governor was there, Governor Markell, and he is now
going to take over the National Governors Association
beginning, I think, next month and he was there for the entire
day. And he has committed himself as the head of the NGA to
focus on employment of people with disabilities through the
National Governors Association. Hopefully in the next year we
will see more Governors focusing on this in their States,
again, at a time when the private sector is now beginning to
expand its employment of people with disabilities. I mentioned
the Chamber of Commerce and their commitment to this.
I guess what I want you to address yourself to is, I do not
need to have a whole encyclopedia, but what are some of the
things that you see? You have been on both sides of this issue.
You have been an advocate and now you are Secretary, not that
you are not an advocate, but you have been on both sides of
this.
What is it that we should be thinking about doing here to
really help move this along where Governors are now, the
private sector, the idea of getting people out of institutions,
getting them competitive employment? Give me two or three
different things that you would like to see us address
ourselves to.
Ms. Landgraf. Well and again, I think it is important when
we talk about employment that we--I indicated an ADA
Ambassador. But one that really can--and all of us should be
responsible for that, for educating businesses, for educating
ourselves. Public entities are also businesses, so to speak,
and we can do a better job at employing individuals with
disabilities.
The private sector, what we saw in Connecticut, major
corporations are stepping up to the plate, and they see this as
a tremendous opportunity for their bottom line. Not necessarily
a charity, but they value all employees, including people with
disabilities.
I believe at the distribution center that Walgreens has in
Connecticut, the story that I found most compelling was
relative to their safety as well, because many times employers
will believe that it might be unsafe to hire someone with a
disability. They are finding just the opposite, especially with
individuals who are deaf and hearing impaired and who are their
fork-lifters. And they are actually having those who are not
deaf and hearing impaired now wear earplugs because they found
out that it actually keeps them from being distracted while
they are operating the forklift. So again, it was a teachable
moment.
So I believe from the employment perspective that we have
to work collectively, again, across the Government. We have the
Division of Vocational Rehabilitation. My Department actually
does the follow along services relative-supported employment.
From a benefits package, again, that is a good use of our
Medicaid dollars to really focus on: how do we utilize those
dollars in the best way to enable individuals to become self-
sufficient?
Employment is the opportunity to enable individuals to
become self-sufficient. It is better for the individuals, and
they have some funding, and they have their own power. I
believe that money is power and when people are disenfranchised
based on poverty it only further challenges the individual. So
we, as the public sector, need to focus our programs on
empowerment and, again, a meaningful work and a meaningful wage
enables people to become empowered.
We need to look at the Medicaid buy-in program because I
hear from family members and individuals with significant
disabilities that some of their concern in accessing employment
is relative to the fact that they might lose their Medicaid
benefit. And Medicaid operates a little bit different than
other health insurance. Medicaid provides personal attendant
services that a private insurer may not provide, so individuals
do not want to lose that.
So we need to kind of look at, from a public policy
standpoint, both at the Federal level and the State level with
the ADA at the top of that list, how do we change that paradigm
and benefit to really focus on how do we enable people access
to their community's employment, transportation, housing, and
health care?
The Chairman. Very good because my staff just handed me,
Andy just handed me this list of the different tools in
Medicaid to provide community-based services. There are: one,
two, three, four, five, six that I have right here--six
different parts of the code.
There is a Medicaid Rehabilitation and Personal Care Option
1396d(a)(13), then there are home community-based waivers
section 1396n(c). Is this good? Should this not all be
together?
Commissioner Baugh, I see you smiling about that, all the
different silos we have here. How do we wade through all of
that stuff?
Ms. Baugh. Well, actually, one of the challenges at the
State level is trying to figure out where do you go to get what
for this little piece.
The Chairman. Yes.
Ms. Baugh. When it could be something more simple, where
you go to one place, you get X-amount of money, and this is
what you say you are going to accomplish with those dollars,
and actually have a level of accountability based on evidence-
based outcomes.
The Chairman. There you go.
Ms. Baugh. Not only, for the clinical quality, but fiscal
quality as well.
The Chairman. I think we ought to take a look at how we can
consolidate some of these things, all these little different
lines.
Excuse me, Senator Enzi, do you have any questions?
Senator Enzi. Thank you, Mr. Chairman.
Commissioner Baugh, in your written testimony you called
for more collaboration between the Federal agencies, and
consolidating and streamlining mandates. I think this fits with
what Senator Harkin was just talking about, access to Federal
programs that meet the initiatives of the Olmstead efforts.
Can you expand on why this is needed and what we should do
from your perspective to increase this collaboration of the
Federal agencies?
Ms. Baugh. Yes, sir, and that is a great question.
Some of the challenges that we face, or currently face as a
result of our downsizing efforts, is housing and the lack of
housing for individuals that are currently living in
institutions. And sometimes, although this is changing now
because of the collaboration at the Federal level, sometimes
the policies for CMS and Medicaid may conflict with Olmstead
implementations.
For example, supportive employment would be a good one,
integration and support of employment and fully integrating
back into society is something that is inherent in Olmstead.
And you do not want to just move them from one large
institution to a mini institution, and let individuals sit
there, because you are not integrating, and they are not
thriving and becoming part of the community.
Well, if they go into supportive employment or full
employment, then they lose their Medicaid or Medicare benefits.
And like the Secretary was saying, the benefits for Medicaid
and Medicare are different than on other private insurance that
provides the supports to allow an individual to work. And so,
that would be one example.
Another example would be housing vouchers. Do our State
housing people know what the Federal housing authority is doing
with regards to housing vouchers? And is there a disparity
among States with implementation of HUD vouchers? Is there a
disparity among States with regards to implementation, or
requirements for grants through CMS or other Federal agencies?
So those would be some examples I would use.
Senator Enzi. Secretary Landgraf, would you like to answer
that too?
Ms. Landgraf. I would like to touch upon the Commissioner's
comments relative to housing because it is something we have
just come up against in Delaware with our State rental
assistance program, and how we are administering that through
the housing authority.
We are finding that for people with serious, persistent
mental illness, they typically have issues relative to the
criminal justice system. It is the nature of the disease. So
many times they get caught up in the criminal justice system.
HUD has some requirements relative to who can be housed in
Section 8 housing, and if they have a criminal background. And
what we are finding with our vouchers, they are asking that
everyone that we refer to the voucher program go through a
criminal background check and that is very stigmatizing for the
population. And we know that mostly individuals will come up
with some type of criminal justice activity just by virtue of
their disability, of serious persistent mental illness.
So we are relying on the ADA to say, ``We need a reasonable
accommodation.'' And that we now at the Department of Health
and Social Services will be the one that guarantees to the
housing authority that this individual is able to access these
vouchers and rental programs. I believe HUD has a restriction.
If you have been engaging in methadone is one area that they
will not allow the individual to be housed or if you are a sex
offender.
Now we are responsible regardless. So I call those
individuals the unacceptable individuals for the vouchers, but
then I am guaranteeing to our State housing authority that we
have done a level of background. I do not do full criminal
background checks, but I rely on my team to validate that the
people we are putting in housing are those individuals that
will comply to the Section 8 housing code, and then we are
responsible for housing the others.
But that is how discrimination sometimes comes down and how
these programs actually end up conflicting. But we are making a
commitment and I am working this through with the housing
authority. But again, I think reasonable accommodation is the
key and how we look at reasonable accommodation. I think many
States are familiar with reasonable accommodation relative to
tangible things like ramps and accessibility from that
perspective.
But when you start talking about, at this level, we really
need to have that conversation and look at reasonable
accommodation as part of the ADA, and enabling people to have
access to their communities.
Thank you.
Senator Enzi. Well, you all have given us a lot to think
about and I am out of time, but I am going to submit a question
to each of you.
Because one of the things I run into in my State, and other
places, is people that want something done with employment laws
so that they can find the employees that they need. And I ask
them a little bit about what type of a job they are talking
about. And I say, ``Have you ever considered people with a
disability?'' They say, ``What kind of disability?'' And we
work through that problem a little bit too. And then their
final question is, ``That would work. Where would I find
them?''
I am going to be asking in this written question, which I
want you to take some time and think about, how can we have
some kind of a clearinghouse so that the people that need the
jobs can find the jobs, and the people that need the workers
find the workers? And we wind up with this very competitive
situation for people with disabilities.
Thank you for your testimony. Appreciate it. I am going to
have to run.
The Chairman. OK. Thank you, Senator Enzi.
I will close up here. I would like to thank all of the
witnesses for their testimony and insights on the progress we
are making under Olmstead. That was the purpose of this
hearing--tomorrow is the 13th anniversary--to promote community
integration for people with disabilities. We appreciate you
making the time in your busy schedules to travel here and share
your expertise.
In the past 2 years, we have continued to make significant
progress in expanding home and community-based services and
supports that allow people with disabilities to live, work, and
participate in their communities. To further encourage this
progress, Congress has provided States with a variety of tools
including the Community First Choice Option to help them comply
with Olmstead, and making it easier for them to provide
services for people with disabilities in integrated settings.
Now today, I have instructed the GAO to release a study
that I requested on the degree to which States have already
taken advantage of, or are planning to use, these new tools for
financing home and community-based services and supports that
were included in the Affordable Care Act.
Tomorrow, I will send a letter to each Governor reminding
them of these tools and asking them to report to me on their
State's efforts to implement Olmstead, and to share their best
practices, and to let me know if there are additional things
the Federal Government can do to assist them in their efforts
to comply with the ADA's integration mandate.
I just want to point out that the new GAO report says that
Mississippi spends the lowest amount of any State on home and
community-based services as a percentage of their total
Medicaid spending on long-term services, 14.4 percent; the
highest was New Mexico at 83 percent; everybody else is in
between; and to share best practices.
We all come from different regions of the country. For
instance, I am from Iowa. We tend to associate more with
Nebraska, and Illinois, and Missouri, the States around us.
Here is Alabama doing a very good job, right next door to
Mississippi and Louisiana, which are way down there at the
bottom. I am hoping your Governor will reach across, and start
working that region, and showing people what can be done.
I might add that my charts show me that Alabama and my
State of Iowa are pretty close to the same, but we are not the
best, but we are doing better. We are somewhere between 25 and
49 percent right now. But I am asking that the GAO release this
study today so that people will know where they are.
I really do want Governors to tell us what their best
practices are, and to reach across State lines to let others
know what they can accomplish.
I thank you all very much for what you are doing.
We will leave the record open for 10 days to allow
additional statements, or supplements, to be submitted for the
record.
I thank you for coming here early because, I see now, our
time has run out, and we have to get over and start voting. So
thank you very much.
The committee will stand adjourned.
[Additional material follows.]
ADDITIONAL MATERIAL
Prepared Statement of the National Disability Rights Network
The National Disability Rights Network (NDRN) would like to thank
Senator Harkin, Senator Enzi and the members of the Senate Committee on
Health, Education, Labor, and Pensions for holding a hearing on the
topic of enforcement of the U.S. Supreme Court's decision in Olmstead
v. L.C.\1\
---------------------------------------------------------------------------
\1\ Olmstead v. L.C., 527 U.S. 581 (1999).
---------------------------------------------------------------------------
NDRN is the national membership organization for the Protection and
Advocacy (P&A) System, the nationwide network of congressionally
mandated agencies that provide legally based advocacy services to
individuals with disabilities. A P&A agency exists in every State, the
District of Columbia, Puerto Rico, and territories (Guam, U.S. Virgin
Islands, America Samoa, and Northern Marianas Islands). P&A agencies
have the authority to provide legal representation and other advocacy
services, under Federal statutes, to all people with disabilities.
Collectively, the P&A System is the largest provider of legally based
advocacy services to persons with disabilities in the United States.
Since the Supreme Court ruling, the P&A System has been a leader in
enforcement efforts of Olmstead v. L.C. in the United States. The
unique role that the P&A System plays in the Federal enforcement scheme
was recognized by the 7th Circuit Court of Appeals, which stated in a
case involving the Indiana Protection and Advocacy Service (IPAS) that
``the special Federal responsibilities it carries out, and the direct
Federal funding it receives, IPAS is closer to being a specialized
agent of the Federal Government for these purposes than it is to being
an ordinary State agency.'' \2\ Furthermore, the U.S. Department of
Justice has recognized the P&A System has ``a central role in ensuring
that the rights of individuals with disabilities are protected,
including individuals' rights under title II's integration mandate.''
\3\
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\2\ Indiana Protection and Advocacy Services, 603 F.3d 365 (7th
Cir. 2010), cert. denied, 563 U.S. 6 (April 25, 2011).
\3\ U.S. Department of Justice, ``Technical Assistance Guide'',
available at http://www.ada.gov/olmstead/q&a_olmstead.pdf.
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As the U.S. Department of Justice stated on the 10th anniversary of
the Olmstead decision, and remains true today, the ``the goal of the
integration mandate in title II of the Americans with Disabilities
Act--to provide individuals with disabilities opportunities to live
their lives like individuals without disabilities--has yet to be fully
realized.'' \4\ In March 2011, President Obama met with Ms. Curtis, who
was one of the lead plaintiffs. Ms. Curtis has multiple disabilities,
and was finally given the opportunity to live in the community, 11
years after the Supreme Court issued the decision. Today, Ms. Curtis
sells artwork and lives in her community.\5\ Unfortunately, not all
persons with disabilities are afforded the same opportunity. For
example, according to State of the States in Developmental Disabilities
(2011), although the number of individuals with developmental
disabilities served by public and private institutions for 16 or more
people has decreased, 92,300 people remain institutionalized in these
facilities.\6\
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\4\ U.S. Department of Justice, ``Statement of the Department of
Justice on Enforcement of the Integration Mandate of Title II of the
Americans with Disabilities Act and Olmstead v. L.C.'', available at
http://www.ada.gov/olmstead/q&a_olmstead.htm.
\5\ See U.S. Department of Justice, ``On Anniversary of Olmstead,
Obama administration Recommits to Assist Americans with Disabilities'',
available at http://www.whitehouse.gov/the-press-office/2011/06/22/
anniversary-olmstead-obama-administration-recommits-assist-americans-
dis.
\6\ David Braddock, Richard Hemp, Mary C. Rizzolo, Laura Haffer, &
Emily Shea Tanis, THE STATE OF STATE IN DEVELOPMENTAL DISABILITIES 51
(Colo. U. ed., 2011)(1977).
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NDRN is pleased that Disability Rights Oregon (DRO), the Oregon P&A
agency, has taken the lead in a recent innovation in the area of
enforcement of Olmstead, through the class action lawsuit of Lane, et
al. v. Kitzhaber, et al. CV-00138-ST (D. Or.). DRO argued on behalf of
the class plaintiffs that the Olmstead decision should be applied when
persons with disabilities are unnecessarily segregated in work that
denies persons with disabilities the opportunity to interact with
persons without disabilities because of the way employment supports are
managed and funded in the State. The class plaintiffs were individuals
with intellectual or developmental disabilities that live in the
community; are eligible for services from the Oregon Department of
Human Services; and are able to and would prefer to work in integrated
employment opportunities. Although, the court dismissed the complaint
with leave to amend it, in the decision, the court held that Olmstead
applies to the State's provision of integrated employment services (or
failure to provide them).
NDRN and the P&As believe that while it is important to continue to
focus on the enforcement of Olmstead to ensure persons with
disabilities are living in the community and not in institutions, part
of this enforcement effort must include ensuring that communities are
safe and provide the services and supports the person needs as they
transition from institutions to community living. During the closing of
the last public institution for persons with developmental disabilities
in Alabama, the Alabama Disability Advocacy Program (ADAP) took a
strong advocacy role in working with the State to ensure that the
residents of this institution were transitioned into the community
where they were going to receive the services and supports they
required, and necessary followup was provided to ensure they were safe
and receiving these services and supports once they were living in the
community. NDRN commends the partnership between the State and ADAP and
would strongly suggest that this community monitoring partnership be
continued throughout the country.
Last, NDRN believes it is important in the context of discussing
the enforcement of Olmstead to address the concerns of some that the
concerns and opinions of guardians and family members are not being
properly considered in either class action lawsuits or U.S. Department
of Justice settlement agreements. Contrary to that opinion, current
judicial rules provide opportunities for all parties to have the chance
for their voices to be heard in a fair and reasonable manner by
providing the ability to intervene in a case action lawsuit as well as
the opportunity to have their voices heard at mandatory fairness
hearings at the conclusion of litigation. Class-action litigation is a
cost-effective way to ensure that a group of individuals that are
similarly situated are able to pursue the enforcement or protection of
their civil rights. Two recent examples from Illinois and Virginia show
that the current rules work in a fair and just manner, and do not
require legislative change.\7\
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\7\ See Ligas, et al., v. Hamos, et al., No. 05 C 4331 (N.D.I.L.
June 15, 2011)(final consent decree), available at http://
equipforequality.org/resourcecenter/LigasConsentDecreeSigned_0615
2011.pdf; U.S. v. Va. No. 3:12 CV 059 (E.D. VA, June 2012).
---------------------------------------------------------------------------
NDRN and the P&A System stands ready to work with Congress and
Federal agencies to ensure the strong enforcement of Olmstead v. L.C.
We would be happy to provide more information about the work that the
P&A System has done to advocate for people with disabilities in regards
to community integration.
______
ADAPT Community,
July 6, 2012.
Health, Education, Labor, and Pensions Committee,
U.S. Senate,
Washington, DC 20510.
Dear Chairman Harkin, Ranking Member Enzi and Members of the HELP
Committee: ADAPT is a national grass-roots community that organizes
disability rights activists to assure the civil and human rights of
people with disabilities to live in freedom. We are submitting this
written testimony on behalf of the ADAPT Community and the many
thousands of people with disabilities who want to have a REAL CHOICE so
that they may live full and productive lives in the community.
ADAPT respectfully submits this written testimony in response to
the recent committee hearing, ``Olmstead Enforcement Update: Using the
ADA to Promote Community Integration'' (June 21, 2012).
The 1999 U.S. Supreme Court Decision in Olmstead v. L.C. and E.W.
was a landmark decision that recognized the right of people with
disabilities to live in the community instead of being locked away in
institutions. This decision represents the promise of freedom for
Americans with disabilities, but it has become clear that this will be
an empty promise without adequate enforcement and CMS policies that
require States to implement this decision.
The Supreme Court correctly noted that the:
``[i]nstitutional placement of persons who can handle and
benefit from community settings perpetuates unwarranted
assumptions that persons so isolated are incapable or unworthy
of participating in community life''
and ``institutional confinement severely diminishes individuals'
everyday life activities.'' Olmstead v. L.C. ex rel. Zimring, 527 U.S.
581, 583 (1999). While the Supreme Court's words are powerful, ADAPT
believes that the REAL VOICES of people who have been or are still
trapped in institutional settings are critical to understanding this
issue.
Jeff Arrison, Corning, NY
Jeff was preparing for college when he had a single car accident in
1980. This resulted in him becoming a quadriplegic. From age 20 onward
Jeff would pretty much be in Medicaid institutions.
He had been planning on completing his education, getting a job,
getting married, and having children. Medicaid institutionalization
ended this plan. Although he made over one dozen serious attempts, he
never was able to ``break free'' from Medicaid's grip. Even when his
counselor said to him ``we will get you out of that nursing home,'' he
remained there.
Jeff knew that he was capable of managing an apartment because for
a while he had an apartment of his own from 1981-84. Due to the fact
that Social Security and Medicaid and the State of Massachusetts did
not live up to their word about available community services, he
returned to institutionalization and was never able to ``escape''
again.
Right now Jeff is institutionalized in Founder's Pavilion Nursing
Home, a very inappropriate place for him, but the only place available
in his hometown of Corning, NY. He ``rots'' there with little hope of
returning to society.
His day begins at approximately 10:30 (he says any nursing home is
pleasant when you are asleep, so he tries to sleep as much as
possible.) After getting morning ``hygiene'' he exists by having lunch
(he worked in kitchens before his accident so he knows what kitchens
are capable of, this kitchen doesn't even try). Adequate nutrition is
maintained by ``junk food.'' After lunch he gets through the afternoon
by watching boring television, napping, etc. Keeping him appropriately
entertained would be impossible if it were not for his relatives
pooling their efforts and purchasing him a computer to keep him busy
(when he asked the State to help him finance the computer they said,
``No''). Then another meal of inadequate dinner is served. Followed by
doing the days business (like correspondence) and more television. This
is followed by his evening ``hygiene'' at approximately 10:30. Then at
approximately 1:30 a.m. he goes back to sleep.
He has had to endure such things as broken and dislocated bones,
inadequate doctors care, physical ``forcing,'' unpleasant social care,
medications that is prescribed or requested being often more than 1-
hour late without immediate correction. After many years of non-action
about ``problems'', he has come to the conclusion that Medicaid
institutions ``just don't care.''
Paula Barton, Rochester, NY
My name is Paula Barton. I am a 28-year-old disabled female. After
going to emergency with chest pain, I was sent to a nursing home. They
told me I could not return to my apartment because I could not get any
Nurses Aide service to get me in and out of bed. I was there for 4
months.
During my stay in the nursing home, the experience was not good.
Here are some of the reasons why. The hospital was not geared for a
young person. I could not move freely and I had to be signed out by a
person who was not in a nursing home. I had no independence.
I did have one good experience. The social worker was a young
woman. She understood what I was going through. She started a month
after I arrived there. Together we found an agency that would give me
aide service. I am now home after 4 months. I have 20 hours of aide
service and I'm doing very, very well.
Barrie Berliner, Gloversville, NY (Institutionalized for 1 Year)
I, Barrie Berliner, was in a nursing home because I fell off a
balcony and the nursing home was not a place for me to spend the rest
of my life. With financial supports funded by the Department of Health,
I moved into a house with a few housemates where the care is great. I
have my own room with my own things, help to cook my own meals and I
have all my workout equipment in the living room and it is basically my
own home.
At the nursing home, I had room assigned to me and there were
elderly people there and it was very regimented. Being a spontaneous
person, I couldn't go out with my friends. It was very strict, there
were strict rules and I hated it there. I felt almost dead. It was
because of the physical therapy at Lexington, I can walk by myself and
before, I couldn't walk by myself, I couldn't transfer. I needed a lot
of help. Now I need no help. I am so independent. I couldn't even take
a shower before. Now, I can take a shower by myself and I can take a
shower everyday. Lexington Center has done wonders for me. They've done
so much. There is personal help. Instead of being fed, they taught me
how to feed myself, which in the long run, made me feel great. Nobody
wants to be fed for the rest of their life. Independence is great.
I am a true testimony of what not living in a nursing home can do
for you. Do they want to be waited on or do they want a free
independent life? A choice of freedom. This is America.
Marie Brawn, Eastern, KY (Instutionalized for 20 Years)
I was born in Eastern, KY in 1953. I have Cerebral Palsy. It
affects my limbs and speech. I was institutionalized from age 2 until
27. I will tell you of things that happened to me during this time. I
was drugged so I wouldn't talk about what I heard or saw. I saw
physical abuse. People were being hit. I went to school wearing dirty
clothes. I had to wait a long time for help to the bathroom. I had very
little privacy, even when talking on the phone or to my priest.
Some of the aides would make fun of me.
Things are now changed for me. I have been out for 23 years because
my second husband got me out after a big fight. He died in 1994 from a
heart attack. Then with the assistance of personal attendants, I
learned to live on my own. I have a part-time job working for the
Salvation Army collecting money. I have a pet cat named Shadow. As a
child in an institution, I could never have a pet.
I know a lot of people in institutions who want and need to get
out. It would cost the Government less to keep us in the community. I
am glad to be out and to have more freedom. I can be my own boss.
Kurt Breslaw, Boulder, CO (Institutionalized for 15 Years)
You don't live in a nursing home; you only exist in a nursing home.
I love living in my own house. I get better care in my own home then I
ever did in the nursing home.
Ella Dil, Gallup, NM (Institutionalized for 33 Years)
I went to Los Lunas institution, then to Ft. Stanton institution,
then to Santa Rosa group home, then to the MASH group home in Gallup.
I never came home for Christmas or Thanksgiving. I was sad and very
scared living in these places. I wanted to be with my family growing
up, not in institutions.
I have had my own apartment for years. I live by myself. I pay my
own rent and pay for my food, and everything else I want. I work at
Subway. I have worked there for many years. Now, I visit with my family
on Christmas, Thanksgiving and when I want to on weekends.
Paul Dorenkamp, Chesterfield, MO (Institutionalized for 2\1/2\ Years)
I have been living with MS for over 10 years. I'm unable to walk
and care for myself. When my care became too burdensome for my wife to
care for me, I was placed in this nursing home. Since I arrived at this
place, I've been sexually and physically abused. My needs and wants are
ignored and neglected on a daily basis. I want to go home and live with
my family. I want to watch my children grow up, because of the current
Medicaid policies I'm trapped and imprisoned in this nursing home.
Katy Hoffman, Denver, CO
I felt bad. I didn't want to be there. I cried all the time. I feel
independent being on my own.
Robert Fesel, Robbinsville, NJ (Institutionalized for 11 years)
I am a man with Cerebral Palsy. In my life I have lived in a
boarding home, a developmental center, and three group homes. I have
been restrained, starved, burnt with cigarettes, and abandoned for
dead.
I use a wheelchair and I communicate via an electronic language
board called a Liberator. Technology has changed my life. I now live in
a condominium and work with preschoolers. I work as a volunteer to help
other people move out of developmental centers.
I have my freedom.
I ask you if one of your daughters had a disability would you put
her in an institution. PLEASE, PLEASE help us get people out of
institutions and help get institutions out of our great Nation.
Sheila Dean, Denver, CO (Institutionalized for 2 Years)
I was 28 years old in a nursing home, and had a 7-year old son. I
got out when I was 30, and I wouldn't trade my freedom for anything!
Nathaniel Gates, Rochester, NY (Institutionalized for 3 years)
My name is Nathaniel Gates and I have Multiple Sclerosis. In 1999
while living independently, in Rochester, NY, I found out I needed
spinal surgery. After my operation, I was sent to Monroe Community
Hospital for rehabilitation. Following my rehab, I waited to return
home. I was then told I could not live on my own because I couldn't
walk. They told me I was unable to get aides to take care of me through
a traditional Home Health Care Agency. For this reason I ended up
staying at Monroe Community Hospital for the next 3 years. Living at
the hospital was a big disappointment. It was very depressing and I
felt the whole world was passing me by.
The Center for Disability Rights has helped me to get an apartment.
I have hired my own aides and live independently. I'm happier now and
I'm my own boss again. It's like being on top of the world.
Rick James, Denver, CO (Institutionalized for 5 years)
It was fucking hell, and it is better in my own home.
Herb Larkins, Philadelphia, PA (Institutionalized for 5 years)
I was robbed of my freedom to come and go as I pleased. They took
away my dreams and independence and what I was capable of doing. I was
robbed of my privacy and my ability to have company when I wanted it.
They took away my right to speak up for myself and to speak my mind.
These are the voices and stories of Americans with disabilities who
have been forced to give up their freedom and many of their rights in
order to get the personal assistance services they need to live. These
are the voices that must be heard. While parents and providers may have
their points of view, ultimately, the Olmstead decision is about these
individuals who have been or still are institutionalized. While each of
these people have their own individual stories and experiences, they
all agree that they would rather be in their own home in the
community--like every other American--rather than locked away in
institutions.
ADAPT acknowledges the efforts of the Department of Justice under
the Obama administration to enforce the Olmstead decision, however, we
are concerned that Olmstead enforcement has been driven by key
personnel within the Obama administration and Olmstead compliance is
being determined on a case-by-case basis. Because compliance is
determined on a case-by-case basis, there are no clear benchmarks for
States that set the minimum standard for Olmstead compliance.
Inevitably, the administration will change, and we are concerned that
the gains we have made over the past few years will be quickly lost.
ADAPT has developed a list of issues to consider when developing
benchmarks for Olmstead compliance related to people with disabilities
who are institutionalized in nursing facilities or are at imminent risk
of institutionalization in nursing facilities.
This list is attached at the end of this testimony. ADAPT
acknowledges that minimum standards often become the maximum that can
be expected. However, ADAPT believes that there is an even greater risk
of allowing Olmstead compliance to be defined in the current manner
which can continually be reinterpreted. This is particularly concerning
in the context of State budget crises and initiatives to limit Federal
Medicaid spending. We urge the Office of Health and Human Services to
work with the Department of Justice, ADAPT, and other advocates for
community living to develop specific benchmarks for Olmstead
compliance. Once developed, HHS could require States to report on these
benchmarks and pursue enforcement with DOJ where needed.
We have also noted that existing enforcement measures have largely
focused on individuals with developmental disabilities, intellectual
disabilities, and mental health disabilities and the issues of older
Americans and Americans with physical disabilities who face
institutionalization in nursing facilities have been largely
unaddressed. This is due, in large part, to how funding for advocacy
and enforcement have been established. Enforcement efforts have been
driven by funding for the Protection and Advocacy system which has
significant resources devoted to addressing the needs of people with
developmental, intellectual and mental health disabilities. This leaves
the rights of individuals with disabilities who are locked away in
nursing facilities, or at risk of being forced into nursing facilities,
largely unprotected.
This emphasis in enforcement is reflected in the spending patterns
of States that have begun to re-balance their systems for serving
people with developmental and intellectual disabilities while re-
balancing of nursing facility spending with the home and community-
based alternatives has significantly lagged. There needs to be a
stronger emphasis on Olmstead enforcement in this area.
Because traditional enforcement systems have not adequately
addressed this issue, Centers for Independent Living have taken on the
charge. Unfortunately, we are seeing a recurring trend that the Centers
which have worked to enforce the Olmstead decision face significant
retaliation.
For example, in Rochester, NY, the local Center for Independent
Living--the Center for Disability Rights (CDR)--had assisted
individuals in filing Olmstead complaints because people in nursing
facilities were unable to access home and community-based services.
Basically, the local county was failing to assess these individuals for
services in a timely manner, and people were waiting months in nursing
facilities to even be initially assessed for services in the community.
Approximately 88 Olmstead complaints were filed. In response to this
effort, in July 2010, Monroe County abruptly ended its contract with
CDR to serve as a fiscal intermediary of Consumer Directed Personal
Assistance Services and publicly attacked the organization in the
media.
More recently, in Kansas, Centers for Independent Living assisted
individuals in filing literally hundreds of Olmstead complaints because
of the growing waiting list for home and community-based services.
Since filing these complaints, the centers have seen the reimbursement
rates for Consumer Directed Services slashed and found their
credibility under public attack by the State. This has been a statewide
response by the State and has affected many independent living centers.
Although the disability rights community is becoming increasingly aware
of the threat of retaliation against centers that are working to
enforce Olmstead, there has been little notice of this issue by the
U.S. Department of Justice which leaves the retaliation to continue
unchecked.
To address these concerns, it is imperative that the Protection and
Advocacy network begin to systematically use Protection and Advocacy
for Individual Rights funding to address Olmstead compliance for older
Americans and those with physical disabilities in nursing facilities or
at risk of placement in nursing facilities. We also urge the Department
of Justice to focus on Olmstead enforcement for people with physical
disabilities and elderly people who are trapped in or at risk of being
forced into nursing facilities. The Department of Justice, perhaps
working in conjunction with the Protection and Advocacy system, can
make significant progress by focusing on a few high profile nursing
facility cases in order to set precedent and send a clear message that
people with physical disabilities and the elderly are also covered by
Olmstead. Additionally, DOJ must begin to address the retaliation that
has occurred against Centers for Independent Living that have advocated
for Olmstead compliance.
Another lesson learned from the Kansas experience is that there is
extremely limited enforcement available through Health and Human
Services (HHS) and that pursuing enforcement through the HHS Office for
Civil Rights actually delays justice for individuals who are
institutionalized against their will or face unwanted
institutionalization. In Kansas, advocates filed literally hundreds of
Olmstead complaints with the HHS Office for Civil Rights. Although HHS/
OCR tried to address these complaints with the State, the State of
Kansas refused to resolve the compliance issues. Although HHS could
have withheld Medicaid funding from the State as an enforcement
mechanism, it instead referred the case to the Department of Justice.
Advocates didn't realize that DOJ could not simply pick up the case
where HHS/OCR left off. DOJ is unable to use the investigative work
that had previously been done by HHS/OCR. Instead, DOJ is required to
do its own investigation. Consequently, the Kansas advocates are now
being required to submit even more complaints directly to DOJ and must
start the entire process again. This is an incredible waste of time
that is delaying justice for Kansans with disabilities who need home
and community-based services to live independently.
Although HHS has said that it is unwilling to withhold Medicaid
funding from the States as a method to force Olmstead compliance, it
has in fact done so with Medicaid funding for family planning. When
Texas refused to contract with Planned Parenthood, CMS withheld its
Medicaid funding for family planning services. Given this precedent,
HHS should withhold Medicaid funding for institutional placement if a
State is unwilling to provide adequate home and community-based
services in compliance with the Olmstead decision. CMS has demonstrated
that it has the authority to do this. The agency should use this
authority to leverage the changes needed to assure Olmstead compliance.
In light of the 13th anniversary of the Olmstead decision, which
determined, in accordance with the Americans with Disabilities Act's
integration mandate, that long-term services and supports must be
provided ``in the most integrated setting appropriate to the needs of
qualified individuals with disabilities,'' it is imperative to take
stock of how far we have come and where we need to go.
Since the inception of Medicaid in 1965, there has been an
institutional bias: nursing facility services are mandatorily covered
while community-based alternatives to institutionalization remain
optional. Despite over 20 years of advocacy, this bias remains today.
Perhaps the most significant movement forward toward ending the
institutional bias in Medicaid, is the creation of the Community First
Choice (CFC) Option, which passed as part of the Affordable Care Act.
We commend Senator Harkin and Senator Schumer for championing this
Option and securing its place in the historic healthcare legislation.
The Community First Choice Option is a community-based Medicaid
State plan service which includes hands on assistance, safety
monitoring, and cueing for assistance with activities of daily living,
instrumental activities of daily living, and health-related functions
based on functional need, not diagnosis or age. Although not a national
mandate, States were given the option to select CFC with the incentive
of enhanced Federal assistance. This financial incentive has been the
impetus for several States (including California, New York, Maryland,
and Alaska, to name a few) to move forward with CFC implementation. If
done correctly, CFC will have a significant impact on States' systems
for providing Medicaid long-term services systems and could potentially
allow millions of Americans with disabilities to avoid unwanted
institutionalization or transition out of institutions into the
community.
Because it was enacted as an option under the Medicaid State Plan,
States must select the option in order to eliminate the institutional
bias so there are still significant barriers to full community
integration and the promise of the Olmstead decision. Perhaps the most
significant barrier is the fiscal crises at the State level and the
efforts to curtail Federal spending on entitlement programs like
Medicaid. As States face unprecedented budget deficits, many are
cutting Medicaid home and community-based services. Disability rights
advocates continue to propose thoughtful budget solutions that contain
Medicaid spending and increase community integration and independence.
As an example, advocates in New York offered budget proposals that
would advance the Olmstead compliance and reduce New York's Medicaid
budget by $1B over 5 years. Yet these proposals are not the solutions
States implement. Rather, States all across the country are making
drastic cuts to home and community-based services and supports, the
very programs that support people with disabilities living
independently in the community. At greatest risk are people with the
most significant disabilities who are rightfully fearful that they will
end up institutionalized when their services are cut.
Where States are not directly cutting services, they are
implementing managed care to reduce Medicaid spending. While the
potential exists for managed care to more efficiently use existing
funds through the coordination of services and supports, advocates
worry that this is actually a thinly veiled approach to cutting
services. Even though States can use managed care to eliminate the
institutional bias, some States may be actually reinforcing that bias
because they control access to home and community-based services
through managed care but leave institutional placements in the
traditional fee-for-service system. With inadequate or poorly
structured rates, this approach could lead to people with significant
disabilities being forced into institutional placements against their
will. HHS is in a position to evaluate the State proposals and assure
that States do not force individuals into unwanted
institutionalization. Although CMS has the authority to do this, it has
not exercised that authority sufficiently and States continue to
implement proposals that promote institutionalization with the approval
of CMS. It is imperative that CMS acknowledge that States must comply
with Olmstead as part of their approval process and CMS refuse to
authorize proposals that undercut the right of Americans with
disabilities to live and receive services and supports in the most
integrated setting.
Finally, although CFC creates a system for providing long-term
services and supports based on functional need, it is only part of the
solution. Despite all of the efforts to make home and community-based
services available to individuals with disabilities, institutional
placement is still mandatory and home and community-based services are
only optional. Despite the Supreme Court's findings that
``[i]nstitutional placement . . . perpetuates unwarranted assumptions
that [people with disabilities] are incapable or unworthy of
participating in community life'' and ``institutional confinement
severely diminishes individuals' everyday life activities'' our
Nation's Medicaid policy still forces Americans with disabilities into
institutions. For the promise of Supreme Court's Olmstead decision to
be real, it is up to Congress and the Administration to end the
institutional bias and FREE OUR PEOPLE!
______
Attachment
Issues to consider when developing benchmarks for Olmstead
compliance related to people with disabilities who are
institutionalized in nursing facilities or are at imminent risk of
institutionalization in nursing facilities.
1. Number of people transitioned out of NH and into HCBS A/D
waivers. Has it increased, decreased, remained the same per year?
2. Number of people diverted from entering NH and instead received
HCBS
A/D services. Has it increased, decreased, remained the same per year?
3. Length of time people wait to transition out of NH. Increased?
Decreased? Remain the same?
4. Number of people State requested approval to serve in HCBS A/D
waivers? \1\ Have the numbers increased decreased, remained the same
per year?
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\1\ This will require a review of States' waiver applications. If a
State has not requested increases in approved waiver ``slots,''
regardless of whether the State either receives funds for these slots
or even fills the slots, there will not be increases in people served
in the A/D waivers.
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5. Length of time people wait to receive HCBS to prevent
institutionalization NH.
Increased? Decreased? Remain the same?
6. Numbers of people actually served in HCBS A/D waivers? Have the
numbers increased, decreased, remained the same per year?
7. Change in per capita expenditures for NH Institutionalization
vs. Integrated Community-Based Services for A/D by year? \2\ How do the
increases or decreases compare between NH and HCBS?
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\2\ DOJ could use data from fiscal year 2000 as a base and compare
to most recent data, fiscal year 2008. Data for these benchmarks is
available from Medstat, Kaiser and MDS, and CMS Nursing Home Data
Compendium.
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8. Change in percent of LTC for Institution vs. Integrated in
Community? Is there any indication of ``re-balancing?'' \3\ How do the
increases or decreases compare between NH and HCBS?
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\3\ CMS at the time of the MFP wrote that a ``measurable
benchmark'' in re-balancing was ``a percentage increase in home and
community-based services versus institutional long-term care
expenditures under Medicaid for each year of the demonstration
program.''
---------------------------------------------------------------------------
9. Change between dollar increases in MA per diem NH payments vs.
community MA per diem expenditures? Have the per diem increased,
decreased, remained the same per year? How do the increases or
decreases compare between NH and HCBS?
10. Does Medicaid agency use MDS data or other mechanism to
transition people out of nursing homes who have expressed a desire for
integrated placement? Does Medicaid agency identify people in NH who
want to leave?
11. Does the Medicaid agency have a process for tracking people who
are unable to gain access to HCBS services (e.g., waiting list
management and protocols for both people in NH and in the community)?
12. Does the Medicaid agency have a process to update and maintain
its waiting list on a timely and periodic basis?
13. Does Medicaid agency have a formal procedure to offer HCBS
before people go into NH?
14. How many or percent of people who were admitted to NH with no
HCBS services offered before institutional admission? \4\
---------------------------------------------------------------------------
\4\ MDS (Table AB2) provides data by Medicaid agency re-admissions
to NH.
---------------------------------------------------------------------------
15. How many or percent of people who were admitted to NH had been
offered some HCBS before admission? \5\
---------------------------------------------------------------------------
\5\ Ditto. This data is important to determine if
institutionalization would have occurred if more services had been
offered? Whether the number of admissions could be reduced depends in
part on the amount of home health services actually received and needed
to stay at home.
---------------------------------------------------------------------------
16. Has the Medicaid agency developed and implemented a single
entry point or one-stop system of access for all [institutional and
community-based] MA LTC?
17. Has the Medicaid agency revised and consolidated its MA LTC
under the direction of one agency with regards to budgetary,
programmatic and oversight responsibility for institutional and HCBS
services? If not, does the Medicaid agency have any barriers to
transfer MA funds from NH line budget to community line budget? If yes,
has Medicaid agency ever done so?
18. Does Medicaid agency have a mechanism to prevent acute care
hospitals from discharging people directly into NH? \6\
---------------------------------------------------------------------------
\6\ Ditto.
---------------------------------------------------------------------------
19. Does the Medicaid agency--as distinguished from the NH--have
and use an uniform assessment policy/procedure/form at admission to
divert people from institutionalization? Does the Medicaid agency--as
distinguished from the NH--have and use an uniform assessment policy/
procedure/form at regular intervals during NH residence to determine
what services the person may need or request to be integrated in the
community?
20. Does the Medicaid agency have a formal procedure to inform MA
residents in NH and before admission to NH of both availability of
integrated services and to assess specifically what services person
might need?
21. Has the Medicaid agency reduced MA expenditure payments? If
yes, has Medicaid agency reduced HCBS while leaving NH program
expenditures at status quo, increased, or proportionately reduced?
22. Does the Medicaid agency use lack of care for medical tasks as
a basis to deny HCBS?
23. Has the Medicaid agency revised its nurse and/or physician
delegation/assignment statutes to allow medical and health maintenance
tasks (e.g., bowel and bladder care, medication management, trach/vent
care) to be performed by qualified unlicensed persons?
24. Does the Medicaid agency use ``lack of housing'' as a basis to
deny HCBS?
25. Has the Medicaid agency developed and implemented relationships
with State/local housing departments in order to coordinate LTC and
services in affordable and accessible housing? Does the Medicaid agency
use ``lack of housing'' as a basis to deny HCBS?
26. Has the Medicaid agency developed and implemented policies and
programs that support informal caregivers and consumer directed care.
27. Does the Medicaid agency use a ``too risky'' criteria as a
reason to deny community services?
28. Does the Medicaid agency require ``informal care'' as a reason
to deny community services?
29. Does the Medicaid agency use an aggregate or individual cost
basis in it's
A/D waivers? If the latter, does the Medicaid agency provide for
reasonable modification in waiver services to meet the needs of people
with the most severe disabilities?
30. Is there a process/staff/contract to identify and assist people
who are in NH and choose to transition to a community setting.
31. Is there a shortage of community workforce personnel due to low
wages/benefits that restricts the States ability to serve people in the
community?
32. Is there a rate setting policy that is consistent both for HCBS
and NH programs, i.e., higher inflation factor for one vs the other?
33. Do nursing home waiver package of services and/or cost cap meet
the needs of people with significant needs who choose to remain in the
community?
______
Judge David L. Bazelon Center for Mental Health
Law,
Washington, DC 20005-5002,
July 6, 2012.
U.S. Senate,
Committee on Health, Education, Labor, and Pensions,
428 Senate Dirksen Office Building,
Washington, DC 20510.
Re: Olmstead Enforcement Update: Using the ADA to Promote Community
Integration
Dear Chairman Harkin, Ranking Member Enzi and Members of the Senate
Committee on Health, Education, Labor, and Pensions: The Judge David L.
Bazelon Center for Mental Health Law submits this testimony for the
record of the June 21, 2012 hearing on Olmstead enforcement efforts.
The Bazelon Center is a national non-profit organization dedicated to
advancing the rights of all individuals with mental illnesses or
intellectual disabilities to exercise their own life choices and have
access to the resources that enable them to participate fully in their
communities.
At the June 21 hearing, Assistant Attorney General for Civil Rights
Thomas Perez testified that the Department of Justice has prioritized
Olmstead enforcement over the last 3 years, becoming involved in more
than 40 Olmstead matters in 25 States. The Bazelon Center applauds the
Department's dedicated effort to achieve increased home- and community-
based care for individuals with mental disabilities. This represents an
important commitment to end the unnecessary segregation of individuals
with disabilities in our country.
Community living improves the lives of people with mental
disabilities. It leads to independence; strengthens self-care and
social and vocational skills; and correspondingly decreases challenging
behaviors. Improved service and treatment approaches allow providers
across the country to serve successfully individuals with serious
mental illnesses and profound intellectual disabilities--including
those with the most complex medical needs and challenging behaviors--in
integrated, home-and community-based settings. As detailed in the
amicus brief submitted by the National Association of State Directors
of Developmental Disabilities, the American Association of Intellectual
and Developmental Disabilities, the Association of University Centers
on Disabilities, and others in support of the Settlement Agreement in
United States v. Virginia,\1\ States have significantly expanded
community services, successfully phased out institutions, and safely
transitioned residents of large institutions to the community.
---------------------------------------------------------------------------
\1\ See United States v. Commonwealth of Virginia, 3:12-cv-00059,
Docket No. 52 (April 5, 2012).
---------------------------------------------------------------------------
Ricardo Thornton, the formerly institutionalized self-advocate who
testified before this committee at the June 21 hearing, has made
significant and lasting contributions to his community and his country.
Individuals without Mr. Thornton's wisdom and skills can also enjoy a
safe and fulfilling life in the community. With individually tailored
services and person-centered planning, virtually anyone--including
those who need round-the-clock care--can live successfully in the
community. In fact, more than 1.2 million individuals who qualify for
an institutional level of care currently receive services in home- and
community-based settings through section 1915(c) waivers, including
more than 500,000 individuals with intellectual disabilities.\2\
Unfortunately, however, the majority of Medicaid long-term care dollars
is still spent on outdated and unnecessary institutional care, leaving
hundreds of thousands of individuals on waiting lists to receive
services in integrated, home- and community-based settings.\3\
---------------------------------------------------------------------------
\2\ Kaiser Commission on Medicaid and the Uninsured, Medicaid Home
and Community-Based Services: Data Update 35, Table 4, at http://
www.kff.org/Medicaid/upload/7720-05.pdf (December 2011).
\3\ Id. at 10. Individuals with intellectual disabilities comprise
63 percent of those on the waiting list for home- and community-based
services.
---------------------------------------------------------------------------
Advocates for institutional care have expressed concerns about the
Department of Justice's collaboration with States to phaseout
institutions in accordance with Olmstead. In written testimony
submitted to this committee, VOR cites several examples of high-needs
individuals whom it believes require ``24/7 care.'' These individuals
may in fact need such care, but without question it can be provided in
home-and community-based settings. Given our Nation's success in
serving individuals with comparably high needs in community
settings,\4\ there is every reason to believe that the nine individuals
profiled by VOR could be served in a more integrated setting, and that
these individuals might experience improvements in their health and
behaviors outside of an institutional setting.
---------------------------------------------------------------------------
\4\ See Br. for Nat'l Ass'n of State Dir. of Developmental
Disabilities, et al., supra note 1.
---------------------------------------------------------------------------
It is a tragic reality that individuals with disabilities often
become victims of abuse and neglect. Advocates for institutional care
frequently cite deplorable instances of abuse and neglect that occur in
the community. But abuse and neglect of individuals with disabilities
is rampant in institutional settings as well,\5\ and the appropriate
response is greater oversight of providers and caregivers regardless of
their location. As such, the Department of Justice has taken great care
to insist on improved oversight, accountability and quality management
in the States where it is working to transition individuals from
institutions to integrated settings.
---------------------------------------------------------------------------
\5\ See, e.g., Danny Hakim, State Faults Care for the Disabled, New
York Times, Mar. 22, 2012, at A1, available at http://www.nytimes.com/
2012/03/22/nyregion/new-york-state-draft-report-finds-needless-risk-in-
care-for-the-disabled.html?pagewanted=all (``At the large institutions
overseen by the Office for People With Developmental Disabilities, the
report found 119.68 abuse claims for every 100 beds.''); Emily Ramshaw
& Becca Aaronson, Despite Reforms, Abuse Continues at Texas
Institutions for Disabled, The Texas Tribune, Oct. 23, 2011, available
at http://www.texastribune.org/library/data/abuse-neglect-texas-
disabled-institutions/ (citing 2.21 allegations of abuse per resident
in 2011 at Texas' 13 residential institutions for individuals with
disabilities).
---------------------------------------------------------------------------
Finally, in its written testimony, VOR calls for a hearing and
reauthorization of the Developmental Disabilities Assistance and Bill
of Rights Act (``DD Act''), presumably to attempt curtail by amendment
the investigation, representation, research and advocacy activities of
State Protection & Advocacy organizations (P&As), University Centers of
Excellence in Developmental Disabilities Education, Research, and
Service (UCEDDs), and the Councils on Developmental Disabilities
(CCDs). These organizations responsibly and effectively discharge their
statutory duties to accomplish the central purpose of the DD Act--to
``assure that individuals with developmental disabilities and their
families participate in the design of and have access to needed
community services, individualized supports, and other forms of
assistance that promote self-determination, independence, productivity,
and integration and inclusion in all facets of community life . . . .''
42 U.S.C. Sec. 101(a)(17)(b).
Life in an institution does not permit ``inclusion in all facets of
community life,'' such as social, educational and work activities. In
contrast to institutional settings, where residents typically have
regimented lives and little opportunity to learn independent living
skills, community settings afford individuals the chance to learn to do
things for themselves and develop greater independence, as well as the
opportunity to make choices about matters such as what they eat, when
they get up, how they spend their day, and with whom they spend it.
Given the DD Act's primary focus on community inclusion, it is well
within the authority of the agencies it created to advocate strongly
toward this goal. Indeed, the Act charges CCDs to ``engage in advocacy,
capacity building, and systemic change activities that . . . contribute
to a . . . comprehensive system that includes needed community
services, individualized supports, and other forms of assistance that
promote self-determination for individuals with developmental
disabilities and their families.'' Id. at Sec. 101(b)(1) (emphasis
added). State P&As are obligated to ``protect the legal and human
rights of individuals with developmental disabilities'' by advocating
for community inclusion. Id. at Sec. 101(b)(2). And the UCEDDs are
required by law ``to strengthen and increase the capacity of States and
community'' to achieve community integration. Id. at Sec. 101(b)(3).
The Bazelon Center and its many partners throughout the country
have seen first-hand that individuals with mental disabilities,
including those with the most complex needs, can live successfully in
the community. Care in the most integrated setting appropriate is the
right of all people with disabilities. For these reasons, and because
such care is cost-effective, allowing States to provide care to more
people, we will continue to advocate for the transfer of State and
Federal dollars from institutional care toward care in integrated
settings, consistent with the Americans with Disabilities Act and the
Developmental Disabilities Assistance and Bill of Rights Act.
Thank you for the opportunity to provide testimony on these
important issues, and for conducting the recent hearing on Olmstead
enforcement.
Sincerely,
Jennifer Mathis,
Julia M. Graff,
The Judge David L. Bazelon Center For Mental Health Law.
______
VOR,
June 28, 2012.
Dear Chairman Harkin, Ranking Member Enzi and Members of the HELP
Committee, VOR respectfully submits this written testimony in response
to the recent committee hearing, ``Olmstead Enforcement Update: Using
the ADA to Promote Community Integration'' (June 21, 2012).
VOR is a national, nonprofit, advocacy organization representing
individuals with intellectual and developmental disabilities (ID/DD)
and their families. The vast majority of the people VOR represents are
full-grown adults with the mental age of a newborn or 1-year old. They
cannot care for themselves, many have never spoken, and they are the
most medically fragile of our citizens.
Consistent with Olmstead and a myriad of Federal laws, VOR strongly
supports a continuum of quality care options to meet the wide range of
needs, ranging from family home, own home and other community-based
options to Medicaid-licensed facility-based homes (ICFs/MR).
Individuals with ID/DD who rely on ICF/MR care do not have the
capabilities of witness Ricardo Thornton, whose accomplishments since
moving from Forest Haven Center more than 3 decades ago are impressive
and heartwarming. His 34-year career working in the library, his happy
marriage, his fatherhood, and his capable self-advocacy are all to be
applauded. Years of aggressive deinstitutionalization have led to more
appropriate, less-specialized services for former residents like Mr.
Thornton. However, other affected individuals, as discussed below, have
been met with preventable, predictable tragedy. The Supreme Court, in
its Olmstead decision, expressly cautioned against interpreting its
decision as a deinstitutionalization mandate, predicting such action
would harm people:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community settings . .
. Nor is there any Federal requirement that community-based
treatment be imposed on patients who do not desire it.''--
Olmstead v. L.C., 119 S. Ct. 2176, 2187 (1999). See also,
``As already observed [by the majority], the ADA is not
reasonably ready to impel States to phaseout institutions,
placing patients in need of close care at risk . . . `Each
disabled person is entitled to treatment in the most integrated
setting possible for that person--recognizing on a case-by-case
basis, that setting may be an institution''--[quoting VOR's
Amici Curiae brief].'' Id. at 2189.
Despite the clarity of the Supreme Court's holding and its
cautionary statement with regard to unjustified community placement,
Federal and State officials continue to mischaracterize Olmstead,
treating it as a mandate to close facilities without any regard for how
individuals will be served. As indicated in his statement to the HELP
committee, Thomas Perez, Assistant Attorney General, Civil Rights
Division, Department of Justice, ``The Court's [Olmstead] ruling has
often and properly been called the Brown v. Board of Education of the
disability rights movement.'' One VOR Board Member responded:
``Appropriate services, supports and placements are
individualized and not necessarily `equal.' My children would
die if all that was available to them was what everyone else
has available. With regard to level of disability, my children
were not created equal. They need highly specialized 24/7
care.''
Mr. Thornton does not need 24/7 direct care supports. Imposing such
care on him would not be appropriate, cost-effective or even humane.
Consider, however, Aaron Underwood. Providing Aaron care ``equal'' to
the supports received by Mr. Thornton would be a death sentence.
``Aaron was born 8 weeks prematurely in December 1979. While
he survived the birth, the lifelong effects from subarachnoid
and pulmonary hemorrhages are devastating. A large portion of
his brain was destroyed with the subarachnoid hemorrhage. Aaron
is profoundly neurologically impaired to the point that mental
retardation is not even an appropriate descriptor. His
functional abilities are in the 2-3 month range. Seizures,
respiratory insufficiency, frequent pneumonias, cortical
blindness, spastic tetraplegia with ever-increasing spasticity
are just a few of the daily challenges for his caregivers.
Aaron has no purposeful movement and does not reach for nor
grasp objects. He will remain in the position he is placed
until someone repositions him. He has no bowel or bladder
control--undergarments will be required for the rest of his
life. An incomplete swallow coupled with frequent aspirations
necessitates a feeding tube for all nutrition and medications.
He can, and has, choked on his own mucus, cutting off his
airway. Aaron is non-mobile and when not in bed is positioned
in a custom made wheelchair which accommodates the curvature of
his body. Aaron is also non-verbal and cannot communicate his
needs. Needs must be anticipated and proactively met.''--
(``Meet Aaron Underwood,'' 2011 by parents Kevin and Rebecca
Underwood)
People with disabilities have wide-ranging, diverse, unequal needs.
Equal rights does not mean that individualized, person-centered,
supports are to be ignored. ``Equal rights'' must relate to access to
individually appropriate and necessary supports, no matter the setting.
i. predictable tragedies: the present day deinstitutionalization
experiment
Advocates and policymakers are familiar with the failed
deinstitutionalization experiment of persons with mental illness.
Homelessness and incarceration, even today, are evidence of our ongoing
failure to provide specialized treatment for persons with mental
illness. Despite these lessons learned with regard to the mental health
community, people with ID/DD continue to suffer from the same failed
experiment.
As recently as November 2011, the New York Times reported that
``One in six of all deaths in State and privately run homes, or more
than 1,200 in the past decade, have been attributed to either unnatural
or unknown causes''--(November 6, 2011). The Atlanta Journal-
Constitution found,
``Deficiencies in care, living conditions and recordkeeping
have piled up in scores of Georgia personal care homes [35,000
violations], with the State rarely shutting down violators or
levying heavy fines [in just 544 cases]''--(May 22, 2012).
A Miami Herald investigation found a string of ``deaths [that]
highlight critical breakdowns in a State enforcement system that has
left thousands of people to fend for themselves in dangerous and
decrepit conditions''--(May 1, 2011).
These tragedies, which are repeated in more than 25 States,\1\
amount to reckless disregard for people with profound ID/DD who have
met with tragedy while Federal and State officials figure out what went
wrong. Consider these statements during the hearing by Thomas Perez and
Zelia Baugh:
---------------------------------------------------------------------------
\1\ See, Widespread Abuse, Neglect and Death in Small Settings
Serving People with Intellectual Disabilities, Rev. June 27, 2012 at
http://www.vor.net/images/AbuseandNeglect.pdf.
``It is so important to learn from the past. The
deinstitutionalization movement of the 70's--the profound
mistake that was made was opening the doors of institutions
when community infrastructure didn't exist.''--Thomas Perez,
Assistant Attorney General, Civil Rights Division, Department
of Justice, June 21, 2012)
``If you look at our [settlement] agreements . . . we are
building community infrastructure'' so when someone is in
crisis there are options other than jail or an emergency
room.--(Perez, June 21, 2012)
``ADMH [the Alabama Department of Mental Health] has
experienced three main challenges in its efforts to shift
services to community settings: securing stakeholder buy-in,
identifying and developing resources within provider
organizations to serve persons with significant behavioral
challenges or multiple medical needs, and negative stigma.
While ADMH has developed strategies to overcome these
challenges, long-term efforts will be needed to ensure
continued success.''--(Zelia Baugh, Commissioner, Alabama
Department of Mental Health, June 21, 2012)
A careful reading of these statements signals a profound lapse
between the reality of ``community integration'' and the promise of
community living. Time and again, deinstitutionalization is
aggressively pursued before a ``robust community infrastructure,'' as
described by Tom Perez, is in place. In the context of the mentally
ill, Mr. Perez spoke about the support of some sheriffs' groups for
more community placements for people with mental illness to keep them
from inappropriate placements in the jails--50 years after some pushed
to close all the institutions for people with mental illness. We must
not repeat the same mistake for people with ID/DD.
Mr. Perez says the Justice Department includes strong quality
assurance provisions to prevent repeating this tragic mistake. For
example, Justice Department officials have indicated that the proposed
settlement agreement in Virginia includes a quality assurance provision
modeled on best practices to include crisis centers and more. When
pressed by VOR representatives, however, Justice Department officials
acknowledged that this model community system is not in place in
Virginia or anywhere, but is representative of a compilation of best
practices from around the country. VOR and the members we represent do
not dispute that is a well-intended plan, but it is only a plan and it
is not in place for people to evaluate the results. Given the tragedies
that have befallen fragile individuals with ID/DD who lack access to
highly specialized care in communities around the country, there is
little trust that a ``robust community infrastructure'' will actually
materialize.
Consider, for example, Alabama. Partlow ICF/MR closed nearly 2
years ago, yet ADMH is still working on addressing care, safety,\2\ and
funding challenges. By Commissioner Baugh's own admission, short-term
funding is not assured (requests are pending), and financial
sustainability beyond 2-3 years is of great concern:
---------------------------------------------------------------------------
\2\ Commissioner Baugh also cites the State's quality assurance
agreement with Alabama Disabilities Advocacy Program (ADAP) as evidence
that former Partlow residents are being watched over. Yet, ADAP, which
strongly supported closure even while identifying lapses in community
care before Partlow closed, received a lucrative ($42,000) contract to
oversee quality after it closed.
``The challenge for Alabama is coming up with the match money
for Medicaid. [We have applied for Affordable Care Act grants
that would] assist us with a 90/10 match for the next 2-3
years, but after that looking for sustainability is where we
have great concern.''--(Zelia Baugh, Commissioner, Alabama
---------------------------------------------------------------------------
Department of Mental Health, June 21, 2012).
The mother of a former Partlow resident, who disputes Commissioner
Baugh's characterization of Partlow's closure as a ``success,'' has
tried desperately to remain in contact with the families of displaced
Partlow residents:
``I am in touch with several parents and the disturbing
patterns of abuse and the lack of money for personal needs is
so hard to handle. One family must now travel 1\1/2\ hours to
visit their daughter each day to be sure she is doing well. I
know of nine residents who have died and four who are in jail.
ADAP [Alabama Disabilities Advocacy Program] is supposed to be
monitoring former residents but when I spoke to ADAP they were
only aware of 2 deaths, including one individual who died in a
nursing home. All former 151 residents were very fragile upon
their move from Partlow. Although I have encouraged families to
contact ADAP if they have any problems, families don't trust
ADAP since they were instrumental in closing Partlow. It seems
no one remembers that Olmstead stated on page 17 that
residents, or their legal guardians, have the final say about
the resident being moved to a community setting. We were
totally ignored.''--(Mother to M.M, former Partlow resident,
June 25, 2012).
Unrealistic predictions of cost savings continue to contribute to
community failings. We agree with Mr. Perez that ``robust community
infrastructures'' are needed to serve safely and well people with ID/DD
who are also multiply disabled, medically fragile or who experience
dangerous behavioral conditions.
Significant funding, on par with facility-based care or more, must
be in place before transitioning people from facility-based care.
``Putting the cart ahead of the horse''--moving people before services
are in place with false expectations of cost savings--has resulted in a
poorly funded, ill-prepared community infrastructure leading to
predictable tragedies and poor outcomes. As evidenced in statements by
Mr. Perez and Chairman Harkin, jails continue to be ad hoc
``treatment'' centers for people with cognitive disabilities in many
States who have nowhere else to go. Justice Department settlement
agreements require that ``robust community infrastructures'' be built
(in the future) so that, according to Mr. Perez, jails and emergency
rooms do not remain the crisis centers of last resort. Yet these same
agreements mandate the displacement of a pre-determined number of ICF/
MR residents (quotas) per year, without any regard for individual
choice or need, as required by Olmstead (see e.g., Virginia and Georgia
settlement agreements).
VOR appreciates the questions posed by Senator Al Franken, who
asked whether people with disabilities who chose home and community-
based services should receive the same protections as people who
receive facility-based care. The response by Rita Landgraf, Secretary,
Delaware Department of Health and Social Services, was a ``Resounding
yes!'' We agree completely.
ii. looking ahead: olmstead enforcement must respect different needs
Until Federal and State officials remove their ``rose-colored
glasses,'' tragedies will continue. The people at the center of the
deinstitutionalization experiment are profoundly fragile individuals.
Their right to receive appropriate and necessary care, based on their
individual needs, continues to be ignored, contrary to the letter and
spirit of Olmstead.
As discussed above, anything less than 24/7 highly specialized
services would be a death sentence for some people with ID/DD. There
are thousands of people with severe and profound intellectual
disabilities who are also medically fragile and have multiple physical
disabilities, or who experience significant behavioral challenges that
render them dangerous to themselves or others. These individuals, like
Aaron whose story was shared previously, are thriving in ICFs/MR,
specialized facilities designed to meet their long-term, complex care
needs 24/7. Here are a few of their stories \3\:
---------------------------------------------------------------------------
\3\ As you read the stories of these individuals, consider how very
different their disabilities and support requirements are from self-
advocate Ricardo Thornton.
David has multiple disabilities including a profound level
of intellectual disability (ID), total bilateral deafness, cerebral
palsy and epilepsy. His teeth lack the normal enamel protective layer.
David is 47 and has a mental age of 18 months. He is non-verbal and
does not use sign language. He has had a hip replacement and is being
treated for osteoporosis. His seizures have been under control with
medication for 5 years. He has a history of aspiration pneumonia and
has a diagnosis of moderate oropharyngeal dysphagia. Each meal consists
of specially prepared blended foods and thickened liquids. David is at
a high-risk level for falls, diabetes, choking and dehydration. His
bowel movements are monitored to avoid bowel impaction. David requires
staff assistance with brushing his teeth, shaving, bathing, toileting,
dressing, eating, transferring, and transporting himself. David uses a
wheel chair. He can walk with staff assistance using a walker and a
gait belt. He requires staff assistance to go from one location to
another. He can't perform work activities in active day treatment
without hand-over-hand guidance. David is aware of his surroundings. He
is able to recognize people who are familiar to him and uses facial
expressions (i.e., smiling) to greet others. He enjoys being in an area
where other people are moderately active such as in his home living
room, traveling in a car or van, or in a mall or store. He enjoys
watching people. His only method of communication is through eye
contact and smiles. He does not have other communication skills.--(May
2012, by parents D.P.and N.P.).
My son, Brian, was expelled from four private facilities
(two in Minnesota, two in Wisconsin), which do not have to keep
difficult clients. When they expelled Brian because of dangerous
aggression, he was sent HOME where we had little children. Out of
structure, he broke hundreds of windows (we repaired them every
weekend) and injured everyone in the family except the baby who was
locked away from him. State-operated ICFs/MR in Illinois and many other
States serve people with profound intellectual disabilities, and people
with brain injury and physical aggression like Brian, but some even
more extreme behaviors like sexual aggression, fire-starting, self-
mutilation, etc. The most extreme cases need to have a stable
environment and staff who are well-trained and well-paid. Brian who
engaged in PICA while he was in and out of settings that could not
handle him has had three surgeries to remove pens and pencils which
perforated his stomach lining and infected his lungs. At Choate, a
State-operated ICF/MR, that behavior was extinguished. Families who
have been on the edge between life and death with their loved ones like
we have or waiting for release of their severely disabled loved one who
was inappropriately thrown into jail--we have those stories as well--do
not want another tragedy in their loved ones' lives. What apartment
building would be right for Brian and which McDonald's has an
application with his name on it?--(May 8, 2012 Letter from mother R.B.)
R.S. suffers from brain damage due to an oxygen deficiency
at birth, epilepsy with uncontrolled mixed seizures, profound
swallowing problems, brittle bones, optic atrophy with myopia,
incontinence, stenosis of his neck and back, peripheral neuropathy and
hyper-salivation. R.S. is non-verbal and completely non-ambulatory. He
gets all nutrition, hydration and medication via a gastrostomy tube.--
(February 11, 2012 Letter from guardian A.S.)
S.B.C. suffered from spinal meningitis when she was 7
weeks old and was left mentally and behaviorally disabled with
``explosive-type'' outbursts during which she kicks, screams, bites,
and throws things requiring her to be separated from others for her
safety and that of those around her.--(March 12, 2012 Letter from
parents, D.C. and L.C.)
K.M. was born with severe brain damage resulting in many
medical issues including a seizure disorder. K.'s father describes his
son's intellectual ability as being ``that of a new born baby.'' He is
blind, a quadriplegic with little control of his limbs, and he receives
nourishment through a feeding tube.--See, March 9, 2012 Letter from
father, D.M.
J.K. has Angelman Syndrome and has the intellectual
development of a 6-month to 1-year-old. J.K. is not toilet trained; he
is entirely non-verbal; he tends to place everything in his mouth and
chew on items that become choking hazards; and, when excited and
agitated, he is prone to grab and hold onto whoever is nearby. J.K. has
an exceptionally high pain threshold as illustrated by his not showing
even a whimper of pain after he broke his collarbone a few years ago.
This condition poses a constant risk of accident or medical emergency.
His mother described a recent situation in which J.K. ate 11 inches of
his quilt, which has since been encased in parachute material, and
another incident in which J.K. picked at a sore on his elbow to the
point that he pulled tissue out of his arm requiring surgery.--
(February 11, 2012 Letter from his mother, J.A.)
T.K., who has been a resident of SVTC since the 1970s, is
classified as moderately retarded with autistic tendencies. Her sister,
J., states that T.K. has regularly exhibited violent behavior for most
of her adult life including hitting, pushing, biting and breaking
things. On one occasion, T.K. tried to put a piece of glass in her
sister's eye and, on another occasion, she turned her bed upside down
and ripped a water fountain out of the ground.--(March 15, 2012 Letter
from sister, J.K.)
R.J. is totally disabled, bed/wheelchair bound, tube fed,
spastic with rigid muscles, diapered and medicated for seizures.--
(March 17, 2012 Letter from guardian L.J.)
The individuals' profound disabilities and related needs are
remarkable, but not unique. Their stories are repeated by the vast
majority of families across the country whose loved ones receive life-
sustaining supports in licensed Medicaid facility homes.
Mr. Perez and Commissioner Baugh's testimony acknowledged family
opposition, characterizing such opposition as a ``challenge'' to
closing ICFs/MR. It's no wonder. The deinstitutionalization experiment
has not served people with profound ID/DD very well, nor have Federal
and State officials respected families as true partners in policymaking
and service decisions. Over and over again we hear, ``We were totally
ignored.'' Promises have simply not met with reality. Inasmuch as it is
their loved ones' lives at stake, families are morally driven to
challenge these life-threatening proposals.
Still, closure attempts have proceeded in spite of family
opposition. Fortunately, some Federal courts have noticed:
``Furthermore, the Petitioners have a significant,
protectable interest in receiving the appropriate care of their
choice and protecting their rights under the ADA. See Olmstead
v. L.C. ex rel. Zimring, 527 U.S. 581, 602 (1999) (`Nor is
there any Federal requirement that community-based treatment be
imposed on patients who do not desire it.').''--(U.S. v.
Virginia, May 9, 2012)(Order granting intervention to ICF/MR
residents, as represented by their families/legal guardians,
over objection of the Justice Department)
``Most lawsuits are brought by persons who believe their
rights have been violated. Not this one . . . All or nearly all
of those residents have parents or guardians who have the power
to assert the legal rights of their children or wards. Those
parents and guardians, so far as the record shows, oppose the
claims of the United States. Thus, the United States
[Department of Justice] is in the odd position of asserting
that certain persons' rights have been and are being violated
while those persons--through their parents and guardians--
disagree.''--(U.S. v. Arkansas, June 8, 2011) (case dismissed).
``Thus, the argument made by Arc and the United States
regarding the risk of institutionalization fails to account for
a key principle in the Olmstead decision: personal choice. And
here, where more residents desire to remain in institutional
care than the new facility can provide for, there is little to
no risk of institutionalization for those whose needs do not
require it and who do not desire it.''--(The Arc of Virginia v.
Kaine, December 17, 2009) (plaintiffs were represented by
Virginia's Protection and Advocacy and supported by the Justice
Department as Amicus) (case dismissed).
Yet, DOJ persists undeterred and with continued disregard for
resident and family input and opposition. As noted in Mr. Perez's
testimony:
``[W]hen I became Assistant Attorney General in 2009, I
identified enforcement of the Olmstead decision as one of the
Division's top priorities. In the last 3 years, the division
has been involved in more than 40 matters in 25 States.''
Ann Knighton, VOR's president and the president of the East Central
Georgia Regional Hospital (Gracewood ICF/MR), was not consulted as a
stakeholder with regard to the Justice Department Settlement (October
2010) which calls for the closure of all Georgia ICFs/MR. In response,
she stated:
``The United States Department of Justice has undermined the
U.S. Supreme Court's Olmstead decision by being forceful and
aggressive with regard to community transitions and thereby
omitting the element of resident choice, whether that be a
community or ICF/MR setting. If everyone is forced to accept
community living, then no one has choice.''--(November 30,
2012)
iii. vor urges the help committee to hold hearings and reauthorize the
developmental disabilities assistance and bill of rights act which
hasn't been reauthorized in 12 years
The recent HELP hearing on ``Olmstead Enforcement Update: Using the
ADA to Promote Community Integration'' is a perfect prelude to a long-
overdue hearing: The Reauthorization of the Developmental Disabilities
Assistance and Bill of Rights Act (DD Act). It has been over a decade
since the DD Act was last subjected to congressional scrutiny and
reauthorized.
We want to be clear up front. VOR supports reauthorization of the
Developmental Disabilities Act. We believe the DD Act programs play an
important role in encouraging community integration.
However, we strongly believe that most federally funded DD Act
programs, including State DD Councils, State Protection & Advocacy
groups, and University Centers of Excellence for People with DD, are
harming the very people they are supposed to protect by subscribing to
the incorrect notion that the DD Act and the Americans with
Disabilities Act (ADA), as interpreted by the Olmstead decision,
mandate the transition of all people from ICFs/MR to alternative
settings. P&A, which files class action lawsuits for the sole purpose
of forcing ``community integration,'' are most guilty of operating as
though Olmstead and the DD Act are mandates to close centers, without
regard to resident need and family input. For example:
In a survey of all the people living in a Pennsylvania State
operated ICF/MR and their family contacts were asked if they
wanted a community placement: 1,013 of the 1,223 family
contacts responded to the question and 97.24 percent of them
answered ``no.'' Of the 307 residents who were able to respond
to the question 88.27 percent also answered ``no.''--(Source:
Survey, completed September 2011, as required by the P&A-filed
Benjamin v. PA Department of Public Welfare Settlement
Agreement. No attempt was made to survey all ICF/MR residents
and their families before the settlement agreement).
Coffelt v. Department of Developmental Services was filed
1994 irrespective of the fact that 98 percent of the
developmental center family/guardian survey respondents opposed
P&A representation of their family members. As a result, two
centers closed and 2,500 residents were transferred from
developmental centers to community settings, resulted in well-
documented higher mortality rates. One peer-reviewed study
found risk of mortality to be 82 percent higher in community-
based settings. Then, ``Coffelt II'' was filed in 2002. P&A
challenged intervention efforts by parent/guardian
representatives, arguing,
``As a matter of substantive law, parents and guardians of
institutionalized persons have different and potentially
conflicting interests on matters pertaining to their child's or
ward's constitutional or statutory rights to liberty and due
process.''
The Court rejected P&A's challenge.
A survey of family members and guardians of residents in six
New Jersey ICFs/MR asked recipients of the survey whether they
were happy with the current placement of their loved ones, or
would prefer community-based care instead. Sixty-one percent of
the families and guardians receiving the survey responded.
Ninety-six percent of respondents indicated support of
continued ICFs/MR placement. The survey, sponsored by family
advocates for residential choice, was an effort to respond to
serious flaws in earlier State surveys and studies that have
been used to justify downsizing and closure proposals,
including a New Jersey P&A lawsuit.
The Ligas Federal class action lawsuit was brought in 2005 by
Equip for Equality (P&A), against Illinois ``on behalf of ''
6,000 severely disabled residents who live in the 240 privately
operated ICFs/MR with more than nine residents, as well as
those living at home with elderly parents awaiting placements.
In the first 4 years of the case, families, on behalf of their
loved ones, unsuccessfully tried to intervene. As feared, in
2009, after 4 years of litigation, the parties reached a
proposed settlement that would have required the State to
reduce private ``institutional'' beds for each community bed it
added. In response, more than 2,000 families throughout the
State for whom the settlement was supposed to help successfully
objected to the settlement.
All three DD Act programs believe that families of ICFs/MR
residents need to be ``educated'' about the community and are spending
precious resources on propaganda to prove how successful some
transitions are. Families whose children reside in ICF/MR homes do not
need to be educated any more than families of those living in the
community. They have simply made a choice that is deemed unacceptable
to the policies of the DD Act programs, contrary to their authorizing
statute and the ADA (Olmstead). Their original charge was not to do
this type of work but with the long gap in Federal oversight, these
programs have wandered off their established path of advocating for
people with intellectual disabilities into the role of telling the
families and guardians of people with profound intellectual
disabilities what is best for their loved ones. The result is to impose
new limitations on people with intellectual disabilities rather than to
expand those options to the maximum extent possible.
what the law really says: the dd act and olmstead
Like Olmstead in 1999, the DD Act in its 1993 amendments upheld the
rights of individuals with developmental disabilities and their
families to be the primary decisionmakers:
``Individuals with developmental disabilities and their
families are the primary decisionmakers regarding the services
and supports such individuals and their families receive and
play decisionmaking roles in policies and programs that affect
the lives of such individuals and their families.'' DD Act, 42
U.S.C. 15001(c)(3)(1993) (Findings, Purposes and Policies) \4\;
see also, Olmstead v. L.C., 119 S. Ct. 2176 (1999) (``the
transfer from institutional care to a less restrictive setting
is not opposed by the affected individual'').
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\4\ In 2000, the following language was added to the ``primary
decisionmaking'' clause, further strengthening the right of individuals
and their families to choose from among an array of residential
options: ``. . ., including regarding choosing where the individuals
live from available options, . . .''.
The ``primary decisionmaking'' clause was first added to the Act in
1993 due to an amendment by Congressman Henry Waxman. In 1999, the
spirit of the clause was embodied in the Olmstead decision itself. Both
the Act and Olmstead recognize that individuals and their families are
in the best position to know what is best by way of services, supports
and policies. Both the Act and Olmstead embrace individuality--
recognizing that people with disabilities have very diverse needs.
Both also caution against forcing a community setting on someone
who does not desire and could not handle a community setting. The
legislative history of the DD Act, as contained in the 1994 Conference
Report, is as clear as Olmstead on this point:
``First, the goals expressed in this Act to promote the
greatest possible integration and independence for some
individuals with developmental disabilities may not be read as
a Federal policy supporting the closure of residential
institutions.''
* * * * * * *
``Third, Protection and Advocacy systems established under
Part C of the Act shall use the resources made available under
this Act in accordance with the purposes and statement of
policy set forth in the Act and are authorized to pursue
appropriate remedies to address the violation of rights under
the laws in all settings, including community and ICF/MR
institutions . . . ''.--[(H. Rep. 103-442 (March 21, 1994)].
The parallels between Olmstead and the DD Act are unmistakable.
Yet, many DD Act programs continue to work to counter individual and
family choice by proactively seeking the elimination of the ICFs/MR
option.
iv. conclusion
Contrary to the decision itself, ``Olmstead enforcement''
initiatives impose community placement on individuals, with regard for
choice and the fundamental differences between individuals with
physical or mild intellectual disabilities and those with profound
intellectual disabilities. The ideology which drives the
deinstitutionalization experiment (in the name of Olmstead) and the
resulting outcomes are not critically scrutinized by Congress or the
Administration.
The affected individuals and their families deserve a hearing; they
deserve a voice. Including family stakeholders in future Senate
``Olmstead Enforcement'' hearings and holding a hearing in conjunction
with the DD Act would provide these individuals and their families, as
well as other people with intellectual and developmental disabilities
and their families, with an opportunity to be heard. Their perspective
matters. Choice matters.
Thank you for your consideration. For additional questions, please
contact Tamie Hopp, VOR Director of Government Relations & Advocacy, at
605-399-1624 or [email protected].
Sincerely,
Sam Golden,
Chair, VOR Government Affairs Committee.
Peter Kinzler,
Chair, VOR Legislative Committee.
[Whereupon, at 11:09 a.m., the hearing was adjourned.]