[House Hearing, 108 Congress]
[From the U.S. Government Publishing Office]
CONSUMER DIRECTED SERVICES: IMPROVING MEDICAID BENEFICIARIES' ACCESS TO
QUALITY CARE
=======================================================================
HEARING
before the
SUBCOMMITTEE ON HEALTH
of the
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED EIGHTH CONGRESS
FIRST SESSION
__________
JUNE 5, 2003
__________
Serial No. 108-28
__________
Printed for the use of the Committee on Energy and Commerce
Available via the World Wide Web: http://www.access.gpo.gov/congress/
house
__________
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WASHINGTON : 2003
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COMMITTEE ON ENERGY AND COMMERCE
W.J. ``BILLY'' TAUZIN, Louisiana, Chairman
MICHAEL BILIRAKIS, Florida JOHN D. DINGELL, Michigan
JOE BARTON, Texas Ranking Member
FRED UPTON, Michigan HENRY A. WAXMAN, California
CLIFF STEARNS, Florida EDWARD J. MARKEY, Massachusetts
PAUL E. GILLMOR, Ohio RALPH M. HALL, Texas
JAMES C. GREENWOOD, Pennsylvania RICK BOUCHER, Virginia
CHRISTOPHER COX, California EDOLPHUS TOWNS, New York
NATHAN DEAL, Georgia FRANK PALLONE, Jr., New Jersey
RICHARD BURR, North Carolina SHERROD BROWN, Ohio
Vice Chairman BART GORDON, Tennessee
ED WHITFIELD, Kentucky PETER DEUTSCH, Florida
CHARLIE NORWOOD, Georgia BOBBY L. RUSH, Illinois
BARBARA CUBIN, Wyoming ANNA G. ESHOO, California
JOHN SHIMKUS, Illinois BART STUPAK, Michigan
HEATHER WILSON, New Mexico ELIOT L. ENGEL, New York
JOHN B. SHADEGG, Arizona ALBERT R. WYNN, Maryland
CHARLES W. ``CHIP'' PICKERING, GENE GREEN, Texas
Mississippi KAREN McCARTHY, Missouri
VITO FOSSELLA, New York TED STRICKLAND, Ohio
ROY BLUNT, Missouri DIANA DeGETTE, Colorado
STEVE BUYER, Indiana LOIS CAPPS, California
GEORGE RADANOVICH, California MICHAEL F. DOYLE, Pennsylvania
CHARLES F. BASS, New Hampshire CHRISTOPHER JOHN, Louisiana
JOSEPH R. PITTS, Pennsylvania JIM DAVIS, Florida
MARY BONO, California THOMAS H. ALLEN, Maine
GREG WALDEN, Oregon JANICE D. SCHAKOWSKY, Illinois
LEE TERRY, Nebraska HILDA L. SOLIS, California
ERNIE FLETCHER, Kentucky
MIKE FERGUSON, New Jersey
MIKE ROGERS, Michigan
DARRELL E. ISSA, California
C.L. ``BUTCH'' OTTER, Idaho
Dan R. Brouillette, Staff Director
James D. Barnette, General Counsel
Reid P.F. Stuntz, Minority Staff Director and Chief Counsel
______
Subcommittee on Health
MICHAEL BILIRAKIS, Florida, Chairman
JOE BARTON, Texas SHERROD BROWN, Ohio
FRED UPTON, Michigan Ranking Member
JAMES C. GREENWOOD, Pennsylvania HENRY A. WAXMAN, California
NATHAN DEAL, Georgia RALPH M. HALL, Texas
RICHARD BURR, North Carolina EDOLPHUS TOWNS, New York
ED WHITFIELD, Kentucky FRANK PALLONE, Jr., New Jersey
CHARLIE NORWOOD, Georgia ANNA G. ESHOO, California
Vice Chairman BART STUPAK, Michigan
BARBARA CUBIN, Wyoming ELIOT L. ENGEL, New York
HEATHER WILSON, New Mexico GENE GREEN, Texas
JOHN B. SHADEGG, Arizona TED STRICKLAND, Ohio
CHARLES W. ``CHIP'' PICKERING, LOIS CAPPS, California
Mississippi BART GORDON, Tennessee
STEVE BUYER, Indiana DIANA DeGETTE, Colorado
JOSEPH R. PITTS, Pennsylvania CHRISTOPHER JOHN, Louisiana
ERNIE FLETCHER, Kentucky JOHN D. DINGELL, Michigan,
MIKE FERGUSON, New Jersey (Ex Officio)
MIKE ROGERS, Michigan
W.J. ``BILLY'' TAUZIN, Louisiana
(Ex Officio)
(ii)
C O N T E N T S
__________
Page
Testimony of:
Gittens, Patricia............................................ 17
Mahoney, Kevin J., Associate Professor, Boston College,
Graduate School of Social Work............................. 11
White, Terry F., Secretary, Florida Department of Elder
Affairs.................................................... 20
Williams, Bob, Codirector, Advancing Independence and
Modernizing Medicare and Medicaid.......................... 26
Additional material submitted for the record:
Williams, Bob, Codirector, Advancing Independence and
Modernizing Medicare and Medicaid, responses for the record 43
(iii)
CONSUMER DIRECTED SERVICES: IMPROVING MEDICAID BENEFICIARIES' ACCESS TO
QUALITY CARE
----------
THURSDAY, JUNE 5, 2003
House of Representatives,
Committee on Energy and Commerce,
Subcommittee on Health
Washington, DC.
The subcommittee met, pursuant to notice, at 10:02 a.m., in
room 2141, Rayburn House Office Building, Hon. Charlie Norwood
(chairman) presiding.
Members present: Representatives Bilirakis, Deal,
Whitfield, Norwood, Wilson, Buyer, Fletcher, Brown, Waxman,
Stupak, Green, Capps, and Dingell (ex officio).
Also present: Representatives Stearns, Markey, and Allen.
Staff present: Chuck Clapton, majority counsel; Steve
Tilton, health policy coordinator; Eugenia Edwards, legislative
clerk; Patrick Morrisey, deputy staff director; Amy Hall,
minority professional staff member; and Bridgett Taylor,
minority professional staff member.
Mr. Norwood We now call this hearing to order. I would like
to start by welcoming our witnesses and thanking them for
joining us today. We do appreciate your time and effort to be
here, all of you.
It is critical that we have an opportunity to learn from
people with real-world experiences in the Cash and Counseling
program. My understanding is that this program has been
successful, but I believe it is vital that we hear directly
from the experts as to what has worked and what has not. I am
also hopeful that you might expand on how we could apply some
of these principles in this program broadly to other areas of
Medicaid, if that is possible, and, even better, expand the
program to other States.
Once again, welcome all.
I want to remind the members that they have an opportunity
of declining an opening statement; and if they do, that will
increase their time from 5 to 8 minutes in questioning.
With that, I now yield to Ranking Member Sherrod Brown.
Mr. Brown. Thank you, Mr. Chairman.
I want to thank our witnesses. Mr. Williams, especially,
thank you for joining us.
Secretary White, nice to see you again. Sorry you are no
longer in our State.
I want to thank the chairman and the committee for holding
this important hearing. It is refreshing to be talking about
ways to actually strengthen Medicaid and not dismantle it. It
appears my colleagues on the other side of the aisle have had
an epiphany. All my Republican colleagues on this committee
voted to cut $93 billion from the Medicaid program. Now at
least we want to see--all of us want to see the program
strengthened.
Medicaid is the largest health insurer in the Nation.
Before Medicaid, virtually every low-income child and every
low-income disabled American lacked coverage. One in five
people with a specific chronic disability, 30 percent of
children with chronic disabilities, 15 percent of working-age
adults with chronic disabilities are covered by this program.
Over the last decade, the disabled have been the fastest
growing eligibility category in Medicaid. It plays a critical
role in providing coverage gaps for low-income disabled people.
It is an essential part of our country's health care system,
our long-term care system, and our economy. In Ohio alone, in
my State, 36,000 health care professionals and 170 hospitals
provide care to Medicaid beneficiaries.
I would add that of the 270 million people in our country,
90 million of them are served--their health care is provided by
three government programs: Medicare, Medicaid, and SCHIP. To
show how important these programs are--one out of three
Americans--and that is why it is so important to continue to
try to strengthen this program.
Five years ago Robert Wood Johnson Foundation in
collaboration with the Federal Government began examining a new
approach in access to quality health care. The program was
coined Cash and Counseling, and was designed to empower the
chronically ill and disabled, and to improve their quality of
life. Through the Cash and Counseling program, Medicaid
beneficiaries with disabilities can have a loved one or close
friend provide personal care services like bathing and grooming
or meal preparation while in their home. This novel approach
cashes out the personal care services benefit in exchange for
giving the beneficiary control over basic, often intimate,
assistance, who provides the care, when they receive it, how it
is delivered.
The preliminary evaluations of the Cash and Counseling
program have been overwhelmingly positive. Robert Wood Johnson
reported that satisfaction with the program was high; the paid
caregivers are diligent in completing required tasks. Cash and
Counseling could be a best practices program for disabled
beneficiaries who need a little help to maintain a high quality
of life. The program may have limits. Not everyone has a family
member available or willing to deliver care. Not all family
members have sufficient medical training to deliver more
sophisticated health care. But the success of the program
prompted the current administration to continue offering it
under an Independence Plus waiver. For that, I applaud both the
Clinton and Bush Administration.
In this program, it is possible to use the Cash and
Counseling structure for medical services. It is difficult to
see how an individual could or would want to hire their family
member to be their pharmacist or cardiologist.
Another important consideration is the degree to which we
are comfortable with intrastate and interstate disparities that
logically occur when individuals are given a cash sum.
Realizing this program is in the infant stages of
development, there are several policy issues to consider. The
Medicaid program serves 37 million low-income and disabled
Americans. It is a huge safety net. Part of its success is due
to the Federal Government commitment to increase the safety net
during times of economic hardship, times when 2.7 million jobs
are lost in a matter of 2 years, times when the Federal surplus
plummets into the red in a matter of 2 years, times like these
in which we live.
That is why I am concerned with the Bush Administration's
proposal to block-grant or more precisely block-loan Medicaid.
It is nothing more than a loan tied to a Federal funding cap,
which, in my mind, jeopardizes the future of this program.
Capping Federal funding on Medicaid is tantamount to taking the
umbrella from a person already standing in the rain. If
Medicaid is truly headed toward fund capping, then it is
unlikely that programs like Cash and Counseling would survive.
It is nothing short of cruel to make a commitment to compensate
a family member for providing services, personal services, only
to cutoff that funding halfway through the year. That is no way
to run a program. It is a realistic scenario if this block
grant, block loan program from the Bush Administration is
adopted.
Our hearing today highlights a program with potential for
strengthening Medicaid while preserving its integrity. The
stability of the States' health care system, the stability of
the Nation's health care system depends on preserving and
strengthening good public programs like Medicaid.
Mr. Chairman, I thank you for your time.
Mr. Norwood. I thank the gentleman.
I now recognize Dr. Fletcher from Kentucky for 5 minutes of
opening statement.
Mr. Fletcher. Thank you, Mr. Chairman. And I want to thank
this committee and the chairman for holding this hearing. And
my thanks to the witnesses as well. We look forward to your
testimony about the exciting programs in Arkansas, New Jersey,
and, most notably, Florida.
I think this is a significant step in the right direction
for Medicaid programs, but, more importantly, it is a major
advancement for Medicaid patients. The Cash and Counseling
program applies common sense to a government program that has
been lacking it for far too long, giving patients the power and
ability to purchase services that they determine are
appropriate services that work, and it has proven to work very
well, I believe. The experience we have seen with Cash and
Counseling debunks any misconceptions that people on Medicaid
or their guardians are not capable of arranging for their own
health care needs. In fact, they can do it, they want to do it,
and they are more successful at it than under the old
inflexible structure that unfortunately still exists in most
States. How many other government programs have a satisfaction
rate among participants close to 100 percent? This program
dispels any myths that the Medicaid population somehow is not
prepared to make wise decisions regarding their health care.
The reality is that, generally speaking, Medicaid does not
optimize how it serves its patient. Additionally, the program's
effectiveness continues to wane in many areas. A recent article
by John Igelhart in the New England Journal of Medicine cited a
study by MedPAC, the Medicare Payment Advisory Commission, that
documented continued physician withdrawal from the Medicaid
program. Over the previous 3 years, the number of physicians
who accept all Medicaid patients dropped from 48.1 percent to
39.4 percent. This drop occurred despite large increases in
Medicaid spending over the same timeframe.
Access to specialists is even worse and more concerning. In
another study, researchers posing as Medicaid patients with
fractured arms contacted 50 orthopedic specialists in
California. A stunning 47, or 94 percent of them, refused to
accept such a patient. Clearly, more is broken with Medicaid
than many are willing to admit.
As a medical doctor who spent most of my adult career and
professional career treating patients, I can personally attest
to the access problems that plague America's otherwise
excellent health care system. Our medical technology, our
hospitals, our doctors, and our medical schools are second to
none.
We must ensure that all Americans have access to our superb
services. While a narrow experiment with only a few thousand
patients, Cash and Counseling offers us a glimpse of the
direction in which we must head to maximize that access. When
patients, whether with Medicaid, Medicare, or private
insurance, are afforded control over their health care dollars,
the care they receive improves dramatically. It is my sincere
hope that this approach can be expanded so that many more
Medicaid patients can take advantage of it as well.
And, again, I want to thank you all for coming and
testifying, and I yield back.
Mr. Norwood. I want to remind members that you can have a
longer questioning period of 8 minutes if you forego your
opening statement. It doesn't matter to me.
Mrs. Capps, would you like an opening statement?
Mrs. Capps. Yes, Mr. Chairman. Thank you very much. I thank
you for holding this hearing, and I do look forward to hearing
from our witnesses.
The Cash and Counseling demonstration projects appear to
have proven to be very successful. It is exciting news to me.
They have allowed many Medicaid beneficiaries to take control
over their own lives, which is a worthwhile goal, and they have
supported a continuum of care that we know is an important
ingredient to making Medicare services work. Most health care
providers can tell you that when a patient or, in this case, a
beneficiary can get more effective personal attention, they can
avoid many health care complications. This can lead to a higher
quality of life and fewer expenses by the beneficiary. It is
very cost-saving if it works well. The cost savings is to the
taxpayer, because more extreme treatments down the road could
perhaps be avoided or prevented. The Cash and Counseling
demonstration projects support this idea.
We may be able to use this model to make many other
improvements to Medicaid, Medicare, and health care delivery in
general, but I believe we have to also understand this model's
limits and not get carried away and create a cash and medical
care system. Cash and Counseling works because it is a set of
services with predictable expenses and costs that can be
provided by nonprofessional personnel. It works precisely
because it does not deal with medical care, per se. It would be
very hard, my colleague tried to imagine this, to ask a parent,
a sibling, or a child to provide pharmacy services or to serve
as a doctor. These example are absurd, but they highlight the
limits of the model.
I believe the demonstration project underscores a need
which many fragile populations have, not all, but some parts of
them, a need for case management, for a continuum of services,
for a safety net to make sure that the community is able to be
responsive to the individual's needs. And the particular
demonstration project also work in this case I believe because
they incorporate the direct involvement of the Robert Wood
Johnson Foundation.
Robert Wood Johnson Foundation provides quality control and
administrative support, elements that would be costly if this
is converted into a national program or applied to medical
services. I don't mean to say this as a deterrent, but I think
we need to recognize, I hope we do, and that is why I look
forward to hearing from you witnesses, to see exactly what the
parameters are of the kind of services that you have
experienced. I do want to make sure that we don't get too
excited and overreach, but I also want us to recognize the very
real successes that have been demonstrated in this project. And
I yield back the balance of my time.
Mr. Norwood. With unanimous consent, I will recognize
Bridgette's boss next for 5 minutes, Mr. Dingell.
Mr. Dingell. Mr. Chairman, thank you. I thank you for
holding today's hearing on consumer-directed personal care
services and Medicaid. Increasing community-based care options
for individuals living with disabilities is a critically
important goal, and we must work with the States to achieve
that purpose. Expanding access to personal attendant services
and improving control over such services, the subject of this
hearing, is an important element for committing options to work
successfully.
Last month, along with a number of other members of this
committee, I introduced H.R. 2000, the Strengthening of Our
States Act. Amongst other provisions, the legislation
encourages States to expand personal care services and supports
under Medicaid, and helps the States expand community-based
living options. It provides permanent enhanced Federal funding
for States to provide personal attendant services and supports
in Medicaid, and enhanced Federal funding for home and
community-based waivers.
States do not have the budgetary means to serve all the
individuals who choose community-based care, so they need to
partnership with the Federal Government under the Medicaid
program. For this reason I am particularly concerned with
proposals I now see coming forward out of the administration on
so-called Medicaid reform. The President would have us believe
that severing or limiting State-Federal relationships under
Medicaid and shifting the financial burden onto the States can
help the families who depend on these programs. I believe the
exact opposite will come to pass, particularly in the services
we are discussing today. The assistance in funding for
community-based and consumer-based services that are there will
wither, leaving individuals living with disabilities in a dire
situation, and forcing many back into institutions or leaving
them without any care at all.
One important point to consider is that the consumer-
directed care program has been very successful; but there is no
inherent reason that vouchers are required in order to give
families more control over personal care services. States could
be given incentives to improve consumer choice and control
without capping funding for families so that families are
guaranteed an adequate level of service which is not subject to
future arbitrary budgetary cost-cutting measures.
In addition, even if people were given the ability to,
quote, manage, close quote, their money for personal care
services, this does not mean that people with disabilities
should be given limited dollars to manage all their health care
needs. As many will testify today, it is much easier to manage
certain predictable daily tasks than it is to predict how to
manage the amount of care an individual with disabilities will
need when they are sick.
I look forward to the testimony of all the witnesses today
on the successes of the Cash and Counseling program and how we
might work here in Congress to encourage the expansion of this
model so that it is not limited to only a few States and only a
few populations. We want to ensure that all individuals living
with disabilities can choose to receive the benefit of
directing their own personal care services, but we also want to
ensure that they have adequate protections so that they do not
have to worry about whether the money will be there to take
care of them from week to week.
Mr. Chairman, I thank you for your courtesy.
Mr. Norwood. Thank you very much, Mr. Dingell.
I now recognize Ms. Wilson from New Mexico for 5 minutes on
an opening statement.
Mrs. Wilson. Thank you, Mr. Chairman. I wanted to thank you
and also Chairman Bilirakis, who I think is feeling ill today
and hasn't come in yet, for arranging this hearing. And thank
him for giving me the charge as well as my colleague from
Kentucky Mr. Whitfield, and Dr. Fletcher, and Mrs. Bono, and
Nathan Deal to look at the Medicaid program over the summer and
the fall in a task force to see if we can improve the health
status of those who would depend upon it, and what changes need
to be made to the Medicaid program to improve the satisfaction
of those who depend upon it.
The first thing we wanted to do was to identify some things
that States are doing. Medicaid is a program that is different
in 51 States. We wanted to look at what States are doing that
seem to make a difference and seem to make some common sense.
And the Cash and Counseling and consumer-directed care is part
of what we would like to see propagated across the country on a
program that seems to work for a particular segment of the
Medicaid-dependent population. Florida, Arkansas, and New
Jersey have been able to experiment with what happens when
individuals and families are allowed to determine what care
they need most and how best to provide it.
It seems to make sense to me that satisfaction goes up when
a program is personally tailored to the people who depend upon
it every day, and I am looking forward to hearing from the
witnesses today on how this program has operated and affected
your lives, what you have seen, and what you would recommend to
us with respect to what we need to change in the Federal law to
make it easier to do these kinds of things.
In the past several years, the Congress has focused
intensely on the Medicare program, and in modernizing it and in
adding a prescription drug benefit to it and so forth.
Meanwhile, Medicaid has gone largely under the radar, and yet
it has now passed Medicare in both dollars and enrollees as a
Federal health care program. I think it is about time we
started looking seriously at ways that we make this program
better for the people who depend upon it, and I look forward to
the testimony today in this first of what I think will be many
hearings and meetings over the summer and the fall. And I yield
back the balance of my time.
Mr. Norwood. Mr. Markey, we welcome you to our
subcommittee, and understand that you would like an opening
statement. You are now recognized.
Mr. Markey. I thank you very much, Mr. Chairman.
This is a very good program, obviously, and it is one that
should be expanded upon in the future in order to help people
who are trying to help themselves. All of these individuals and
families are heroes, but heroes need help in situations like
this. And much of what we are talking about here today is aimed
at ensuring that families are able to do what is possible in
order to ensure the best possible standard of life for their
families.
This year the Federal Government is spending $177 billion
on Medicaid, which is a lot of money. By 2006, we will be
spending $197 billion on Medicaid, the Federal Government. And
on the one hand, that is a big amount of money, but looking at
it from a different perspective, it is really not, because the
tax cuts from 2001 and 2003 combined in 2006 are going to be
$244 billion just for that 1 year. So that is a huge tax cut
for 1 year, $244 billion, if the entire Medicaid program is
only $197 billion.
So, in other words, you could easily finance the increase
from $177 billion to $197 billion, the Federal share in 2006,
which is 20 $billion, out of the $244 billion tax cut of the
year 2006 alone. And I think, looking at it in that context as
to whether or not we can afford to continue to expand Medicaid
to ensure that families are given the help that they need shows
that the money is there, that we could do it, that we do have a
capacity to help these families. And a program like this that
is so successful is a demonstration project, but it has
demonstrated that success is something that we should continue
to enhance and improve upon, because the more that we do for
these families, the more that they can do for us and for our
country.
And so I thank you, Mr. Chairman, for having this hearing,
and I hope that by the end of the day that we will understand
how important it is to spend the money to help these families.
Mr. Norwood. I recognized you out of order and hoped you
would sing us a little song or had a poem. I am disappointed.
But thank you for being here.
Mr. Whitfield from Kentucky, do you wish an opening
statement?
Mr. Whitfield. Mr. Chairman, I will waive my opening
statement.
Mr. Norwood. Mr. Stupak. I apologize.
Mr. Stupak. I waive.
Mr. Norwood. You will waive and go for 8 minutes.
Mr. Green, would you wish an opening statement?
Mr. Green. Thank you, Mr. Chairman. I would like to place
my full opening statement into the record. But, again, I
appreciate you having the hearing, and I know meeting with my
own constituents that individuals with disabilities, that they
really would just like to be as close to home as they could,
and anything we can do to help that, to keep them from being
institutionalized, again, I appreciate you bringing up this,
having this hearing so we can discuss it.
Mr. Norwood. Thank you very much, Mr. Green.
Is there anyone, any member, who has--Mr. Waxman wishes an
opening statement. You are recognized for 5 minutes.
Mr. Waxman. Thank you very much, Mr. Chairman.
For a person with chronic illnesses or disabilities,
personal care services could make the difference between
dependence and independence, between living in an institution
and living in a community.
Some people have the financial wherewithal to assure that,
their own personal care. Some people have families who can
provide these services on their own, and some people must turn
to Medicaid. The first thing to be sure of today is that
Medicaid itself can make these services available to those who
need them.
State Medicaid budgets are in crisis, and this Congress and
the Bush Administration have been unwilling to help States in a
real way, so there are serious cuts in eligibility, in benefits
and Medicaid programs around the country. Somehow the Congress
and the President can find $1 trillion of tax cuts, but they
cannot find the money to make sure that Americans get basic
health care. In fact, the Republicans in the House this year
voted for $100 billion in cuts in Medicaid, but no chairman is
willing to have a hearing on the real needs of Medicaid and all
its beneficiaries.
So let me move on to the more narrow topic of today's
hearing. The second thing to be sure of today is that when
these services are available from Medicaid, they are provided
in a way that best meets the desires and needs of the person.
For many people Cash and Counseling is clearly the preferable
model for getting personal care services. People like choosing
their own attendants, hiring their families and friends as
caregivers for such intimate care, and doing their own training
of attendants. It is not for everyone, and it is not
necessarily easy to carry out, but for those who want to and
can use it, this model should be available in Medicaid.
The final thing to be sure of today is that we are cautious
about what we take away from this discussion. This cannot be
done on the cheap. There has to be enough cash for Cash and
Counseling to work. This model is not a cost-containment
device. The virtues of this model cannot readily be transferred
to a wide range of medical and health services. You can't hire
your friends and family to be your pharmacist or your drug
company. You don't need intimacy with your equipment suppliers.
And the financing of any expansion beyond personal care
services would be complicated, risky, and wrong.
The demonstrations that have been done so far have involved
a relatively simple assessment of basic services and hours and
how much they cost. If anybody attempts to carry this to a
broader range of medical and health services, in essence, a
voucher program, it would put people at risk almost as severe
as being completely uninsured. This is the stuff of actuaries
and risk managers, and even they are predicting for the average
need, not the individual need. We should not force people to
risk their health on making a good guess of what they need.
We have the opportunity to provide good and flexible
personal services with these models; indeed, many of us have
supported legislation to provide States with increased
resources to do so. And I urge my colleagues to consider
joining in this legislation.
And, finally, I am grateful to our witnesses for coming
today. I want to thank them for their testimony and their help,
and I look forward to hearing from you.
Thank you, Mr. Chairman.
Mr. Norwood. Thank you.
[Additional statements submitted for the record follow:]
Prepared Statement of Hon. Michael Bilirakis, Chairman, Subcommittee on
Health
I now call this hearing to order. I would like to start by
welcoming our witnesses and thanking them for joining us today. I am
particularly pleased to see my fellow Floridians today and I am very
much looking forward to your testimony. It is critical that we have an
opportunity to hear from people with real world experience in the
``Cash and Counseling'' program. My understanding is that this program
has been successful, but I believe it is vital that we hear directly
from the experts as to what has worked and what has not. I am also
hopeful that you might expand on how we could apply some of the
principles in this program broadly to other areas of Medicaid--and even
better expand the program to other states.
The three Cash and Counseling demonstration programs currently
supported by the Centers for Medicare and Medicaid Services (CMS)
increase the health care options for some Medicaid beneficiaries. These
programs provide the beneficiary with a cash allotment that can then be
used to purchase health care services or other needed items. The
structure of this program ensures that beneficiaries are able to meet
all of their health care requirements while at the same time empowering
the participants to make use of resources in a way that best meets
their individual needs. This system makes certain that Medicaid is
using its limited resources in the most efficient manner possible.
Medicaid beneficiaries participating in Florida's Cash and
Counseling demonstration, have reported increased satisfaction with
Medicaid services and that the overall quality of their care has
improved. The Florida demonstration also found that the flexibility of
the program delayed institutional and other high cost out-of-home
placements by allowing its participants to more efficiently use the
money that would have otherwise been spent directly by Medicaid.
I am certain that today's hearing will help us identify whether or
not these demonstration programs can be used as models to expand and
build on in other states. I understand that CMS recently approved
Florida's request to expand its Cash and Counseling program statewide.
I hope that other states follow Florida's lead and increase beneficiary
access to this promising model. An expansion is warranted given that
the Supreme Court's landmark Olmstead decision requires states to
administer services ``in the most integrated setting appropriate to the
needs of qualified individuals with disabilities.'' I believe it is
incumbent on other states to follow Florida's lead and ensure that the
cash and counseling option is available to every Medicaid beneficiary
for whom this type of model is appropriate.
I would again like to offer a warm welcome to all of our panelists
and thank them for their time and effort in joining us today. I now
recognize the Ranking Member, Mr. Brown, for an opening statement.
______
Prepared Statement of Hon. W.J. ``Billy'' Tauzin, Chairman, Committee
on Energy and Commerce
Thank you, Chairman Bilirakis, for holding this important hearing
today. Thanks also to Mr. Mahoney, Mr. White, Mr. Reimers, Mr. Williams
and Ms. Gittens for making the time to come testify before the Health
Subcommittee about the innovative Consumer Directed Services available
through the Medicaid program.
Of the 40 million Americans covered by Medicaid, about one-sixth or
6.9 million are non-elderly adults with disabilities. The Medicaid
program plays an important role for these individuals. Through
Medicaid, people with disabilities obtain access to medical and
hospital care, as well as long-term care services.
Currently about 1.2 million Medicaid beneficiaries receive
disability-related supportive services in their homes. Most receive
them from government-selected home care agencies, whose professional
staff arrange the services for the beneficiary. As a result, many
Medicaid beneficiaries who have disabilities and receive supportive
services from these agencies often report that they have little control
over who provides their care, when they receive it, and how it is
delivered. For many, this lack of control over basic assistance leads
to dissatisfaction, unmet needs, and diminished quality of life.
Over the past few years, with the help of President Bush's New
Freedom Initiative, some states have expanded opportunities for
Medicaid beneficiaries. Significantly, some beneficiaries have been
permitted to direct and manage their own services and control their
budgets for their heath care needs. Under this model, consumers are
given a monthly allowance to purchase disability-related goods and
services. This affords consumers the authority and tools to craft their
own services plans, with the freedom to use both traditional and
nontraditional providers. This freedom also empowers beneficiaries with
the choice of hiring, firing, scheduling, training, and supervising
their providers, rather than being at the mercy of a particular
provider.
Consumer Directed Services also provides assistance to help
beneficiaries plan and manage their responsibilities, and allows them
to designate representatives (such as family members) to make decisions
on their behalf. All of these features make the model adaptable to a
wide variety of Medicaid beneficiaries including people with
developmental disabilities, physical disabilities, and serious mental
illness, as well as elderly individuals.
From all indications, we are examining a program that works. One
recent evaluation, completed for the Robert Wood Johnson Foundation,
revealed that Medicaid recipients with disabilities who direct their
own supportive services were significantly more satisfied and appeared
to get better care than those receiving services through traditional
Medicaid providers. The study found that with self-direction, 82
percent of the recipients' satisfaction and quality of life were
improved substantially and many indicated that their unmet needs for
care were reduced. These compelling results further emphasize the
importance of expanding Consumer Directed Service to more state
Medicaid programs.
Due to their unique and often extensive health needs, Medicaid
beneficiaries with disabilities use a great deal of medical services.
On average, Medicaid spends nearly eight times more for a beneficiary
with a disability than for a child who qualifies for Medicaid based on
income. In a time when spending on Medicaid consumes between 15 and 20
percent of all state budgets, and Medicaid costs grew by over 13
percent last year, almost all states are now being forced to make
painful cuts to their Medicaid programs. Given the harsh fiscal
reality, it seems possible that Consumer Directed Services could result
in a mutually beneficial situation for both the states and
beneficiaries with disabilities. With a defined contribution for
Consumer Directed Services, states would have a better ability to
forecast their Medicaid expenditures, all the while giving
beneficiaries with disabilities greater discretion when choosing their
services, and better satisfaction. This could enable beneficiaries with
disabilities to manage their care in ways that better meet their needs,
without raising public costs.
Medicaid beneficiaries should expect to control what happens in
their own lives. This includes having a direct say about the home and
community services and some of their health care choices they receive
through the Medicaid program. Chairman Bilirakis and I are very
interested in learning more about how we can expand the use of Consumer
Directed Services in the Medicaid program. We hope you will be able to
provide a unique perspective on the innovative strategies being pursued
to improve the critical services that Medicaid currently offers.
The Medicaid program is truly at a crossroads. If we are not
willing to make some major changes in Medicaid and look at dynamic
programs such as Consumer Directed Services, the long-term prospects
for the program will not be bright. We have serious challenges facing
Medicaid today. Today, we are focusing on one initiative to put
patients first and improve the quality of care received by Medicaid
beneficiaries. Over the next few months, we will look at more
innovative programs for beneficiaries as well as ways to address the
long term financing issues facing the program. America's Medicaid
beneficiaries deserve this and more.
Mr. Norwood. I would like to take a minute and introduce
our guests to the committee, your panelists who many have come
a long way. And we are all very grateful for your participating
in this. We want you to enjoy this time. And, remember, we
consider you the experts. So give us your presentation, and we
are just going to have a very happy dialog here.
First, we want to welcome Dr. Kevin Mahoney, associate
professor of Boston College. Thank you, sir, for coming a long
way. We appreciate it.
And Ms. Patricia Gittens, who we are delighted you are
here. Ms. Gittens brings to us real life experiences in this
Cash and Counseling process, and we are most anxious to hear
from you and grateful.
Mr. Secretary, Terry White, we are glad you are here from
the Florida Department of Elder Affairs.
And Mr. Bob Williams, thank you, sir, for coming,
codirector, Advancing Independence and Modernizing Medicare and
Medicaid.
We are going to ask each of you in turn to present your
statement. Try to stay within 5 minutes. I am not going to cut
you off if it is 6, but try to keep it in that timeframe.
And with that, we will start with Dr. Mahoney. And if you
will give us your testimony.
STATEMENTS OF KEVIN J. MAHONEY, ASSOCIATE PROFESSOR, BOSTON
COLLEGE, GRADUATE SCHOOL OF SOCIAL WORK; PATRICIA GITTENS;
TERRY F. WHITE, SECRETARY, FLORIDA DEPARTMENT OF ELDER AFFAIRS;
AND BOB WILLIAMS, CODIRECTOR, ADVANCING INDEPENDENCE AND
MODERNIZING MEDICARE AND MEDICAID
Mr. Mahoney. Thank you very much, Mr. Chairman and members.
I have the privilege of being the national program director for
the Cash and Counseling demonstration, and we really appreciate
this chance to appear before you today.
Today, in most States, whether you are elderly or a younger
person with disabilities, if you are on Medicaid and you need
help with such basic activities as bathing, dressing, getting
to the bathroom, you have little, if any, choice about who
helps you, when they come, or what they do. But for years
people in the disability community have been saying, if I had
more control over these basics, basic services, my life would
be a lot better, and I could do it for the same amount of
money, maybe even a little less.
The Cash and Counseling demonstration is at its heart a
test of this very idea. It is a test where people are literally
given a choice between traditional agency-delivered services,
or managing an equivalent amount of money to meet their own
personal assistant service needs. It is a large-scale test that
has involved over 6,700 people in a three-State controlled
experiment.
Janice Maddox is a perfect example of the desire of seniors
to have more control over who enters their home and who
provides intimate care. At 75, Ms. Maddox does not have the
best health; she has diabetes and glaucoma and is confined to a
wheelchair possibly as a result of several strokes. But despite
her physical frailty, Ms. Maddox possesses a tremendous asset,
an extensive support network of friends and family who want to
help her to continue to live independently.
For 5 years Mrs. Maddox received personal assistance
services from aides sent to her by an agency that contracted
with Medicaid. Then her daughter read about Arkansas' Cash and
Counseling program in the newspaper. Mrs. Maddox enrolled, and
her oldest daughter Johnetta Thurman became her representative
to help her with the decisionmaking process. Mrs. Maddox's
monthly allowance through Cash and Counseling pays her adult
granddaughter to spend at least 2 hours a day, 7 days a week
attending to Mrs. Maddox's needs. Her allowance is also used to
pay for her grandson $10 a week to do odd jobs around the
house, and it also helps with such things as cost of over-the-
counter medications and toiletries.
Mrs. Maddox's daughter, who lives in Chicago and travels
frequently to Arkansas for her mother, believes the program has
made an immense impact in improving the quality of her mother's
life, which she says there is something about having family
look after her. She doesn't get nearly as many allergic
reactions or bed sores now. And I think that is because when it
is your own you are looking after, you pay more attention.
The Cash and Counseling program has from day one been a
unique partnership funded by the Robert Wood Johnson Foundation
and ASPE, the Office of the Assistant Secretary for Planning
and Evaluation. It operates under waivers and oversight from
the Centers for Medicare and Medicaid Services.
As you will see in a few minutes, the quantitative
evaluation--and this is a major controlled experiment,
randomized control--is done by mathematical policy research,
and we have had a qualitative evaluation that follows 25 people
in each of these States up close and personal, and what did
this really mean in their lives.
The three States, as you have heard, are Arkansas, New
Jersey, and Florida. In Arkansas and New Jersey, this is an
alternative to the Medicaid personal benefit. Florida, as you
will hear, it is really an alternative to three different
1915(C) home and community-based service waivers. All three
States cover the elderly and adults with disabilities. Florida
is unique in also covering children with developmental
disabilities.
If I could have your permission, I would show a few quick
overheads. In these opening remarks, I would like to present
the first results from the demonstration. They come from
Arkansas, which was the first State to implement. They
implemented within a month of getting their Federal waivers.
And it focuses on the effects on quality of care.
I am going to flash through these because of the--let us
see. No, nothing is happening. I will flash through these, and
I will do it this way.
In the qualitative evaluation, we had the chance to look at
impacts on satisfaction, on unmet need, health outcomes, and
life satisfaction. You have copies of these, so I will go at it
this way. As a key to reading these--and if you could flash
through, or do you think I can? Okay. Wonderful.
These are the quality of care measures that we are looking
at.
It is still not going forward.
Mr. Norwood. Mr. Mahoney, we have all of these slides in
each of our handouts; is that correct?
Mr. Mahoney. That is correct.
Mr. Norwood. Your time is over. And I am going to recommend
to the members of the committee, if they would, and maybe they
already have, look through these slides in our handout that we
have.
Mr. Mahoney. If I could have 30 seconds, I could summarize
it.
Mr. Norwood. Thirty seconds.
Mr. Mahoney. Not unsurprisingly, the effects on reduce--the
effects on satisfaction are the kind researchers rarely in
their life will see. They are 20 percentage point difference
more satisfied, major reductions in unmet need. Where people
will be surprised at are the health outcomes. They are either
the same, or you end up with fewer--statistically significantly
fewer bed sores among the younger adults with disabilities,
fewer contractures among the elderly. Even effects from modest
benefits on overall life satisfaction.
The thing that I hope I get the chance to talk about with
the committee later is, looking ahead, all three of these
States in a bipartisan fashion are trying to make this program
permanent. Florida----
Mr. Norwood. That is my first question to you, so you are
going to get a chance.
Mr. Mahoney. Florida has passed legislation, and the Robert
Wood Johnson Foundation is looking at additional--a national
program that could help other States.
Thank you.
[The prepared statement of Kevin J. Mahoney follows:]
Prepared Statement of Kevin J. Mahoney, National Program Director, Cash
and Counseling Demonstration and Evaluation
Mr. Chairman and Members of the Committee, good morning. My name is
Dr. Kevin J. Mahoney. I am the National Program Director for the Cash
and Counseling Demonstration and Evaluation and a faculty member at the
Boston College Graduate School of Social Work. Thank you for inviting
me to testify this morning.
Today, in most states, whether you are an elderly individual or a
younger person with disabilities, if you need Medicaid assistance to
perform basic activities of daily living like bathing, dressing,
toileting, transferring or eating you will rarely have much say over
who helps you or when they come, never mind what they actually do. But,
for years, people with disabilities have been saying, ``If I had more
control over my services, my quality of life would improve and I could
meet my needs for the same amount of money or less.'' The Cash and
Counseling Demonstration (CCDE) is, at its heart, a policy-driven
evaluation of this basic belief--a test where people are given a choice
between traditional agency-delivered services or managing an equivalent
amount of money to meet their ongoing personal assistance service (PAS)
needs--a large scale test involving over 6,700 individuals from three
states in a controlled experiment.
Janice Maddox is a perfect example of the desire of seniors to have
more control over who enters their home and who provides intimate care.
At 75, Ms. Maddox does not have the best health. She has diabetes
and glaucoma and is confined to a wheelchair, possibly as a result of
several strokes. She needs help getting in and out of bed, dressing,
bathing, meeting her dietary requirements, taking her medications, and
keeping up with her housework.
But despite her physical frailty, Mrs. Maddox possesses a
tremendous asset: an extensive support network of friends and family
who want to help her continue to live independently. Her many children,
grandchildren, great-grandchildren, siblings, and extended family,
including neighbors, provide a continual stream of sound and motion for
Mrs. Maddox, a widow, to watch bemusedly from her wheelchair.
For five years, Mrs. Maddox received personal assistance services
from aides sent to her by an agency that contracted with Medicaid. Then
her daughter read about Arkansas' Cash & Counseling program, in the
newspaper. Mrs. Maddox enrolled, and her oldest daughter, Johnetta
Thurman, became her representative decision maker.
Mrs. Maddox's monthly allowance through Cash & Counseling pays her
adult granddaughter to spend at least two hours a day, seven days week,
attending to Mrs. Maddox's needs. Her allowance is also used to pay her
grandson $10 a week to do odd jobs around the house and helps cover the
cost of over-the-counter medications and toiletries.
Ms. Maddox's daughter, who lives in Chicago and travels frequently
to Arkansas to make sure her mother's needs are being met, believes the
program has made an immense impact in improving the quality of her
mother's life. ``There's just something about having family look after
her. She doesn't get nearly as many allergic reactions or bed sores
now, and I think that's because when it's your own you're looking
after, you pay more attention.''
The Cash and Counseling Demonstration and Evaluation (CCDE), funded
by the Robert Wood Johnson Foundation (RWJF) and the Office of the
Assistant Secretary for Planning and Evaluation (ASPE) in the U.S.
Department of Health and Human Services, is a test of one of the most
unfettered forms of consumer direction--offering elders and younger
persons with disabilities a cash allowance in place of agency-delivered
services. It operates under a research and demonstration waiver granted
by the Centers for Medicare and Medicaid Services (CMS). The purpose of
this project is to determine whether cash allowances maximize consumer
choice and promote program efficiencies.
In the states where the program is being implemented, i.e.,
Arkansas, Florida and New Jersey, consumers who meet project
eligibility criteria and express interest in participating in CCDE are
randomly assigned to participate in the program (managing a cash
allowance to purchase services) or serve as a control group and receive
services through the state's existing system. The evaluation compares
outcomes for consumers receiving traditional service packages with
those receiving cash allowances with respect to cost, quality, and
satisfaction.
My presentation today summarizes findings about the effects of Cash
and Counseling on well-being, unmet needs, health outcomes, and
consumer satisfaction. It focuses on the first of the demonstration
programs to be implemented, Arkansas's IndependentChoices. Mathematica
Policy Research, Inc. conducted the evaluation.
demonstration tests a new model of medicaid personal assistance
Medicaid beneficiaries who have disabilities and receive supportive
services from home care or case management agencies often report that
they have little control over who provides their care, when they
receive it, and how it is delivered. For some, this lack of control
over basic, often intimate, assistance leads to dissatisfaction, unmet
needs, and diminished quality of life. Many states are expanding
opportunities for interested Medicaid beneficiaries to direct their
disability-related supportive services by letting them control the
budget for their approved care. This approach could enable
beneficiaries to better meet their care needs, without increasing
public costs. However, critics fear that such options jeopardize
consumer health and safety.
In the Arkansas Cash and Counseling demonstration, called
IndependentChoices, consumers had the opportunity to receive a monthly
allowance, which they could use to hire their choice of caregivers
(except spouses) and to buy other services or goods (such as assistive
devices and home modifications) to meet their personal care needs.
Allowances were equal to the number of hours of care consumers were
expected to receive under the traditional Medicaid program, and
averaged about $320 per month. Consumers were required to develop
written plans for managing the allowance and have them approved by
counselors. In addition, virtually all consumers chose to have the
program's fiscal agents write checks for their purchases and withhold
payroll taxes for caregivers hired with the allowance. Consumers who
were unable or unwilling to manage the allowance themselves could
designate a representative, such as a family member, to do so for them.
demonstration's randomized design and comprehensive survey data yield
definitive results
Cash and Counseling was designed to provide definitive evidence
about its effects on a variety of outcomes, including many that
pertained to care quality. Enrollment into the Arkansas demonstration,
which occurred between December 1998 and April 2001, and was open to
interested Arkansans who were at least 18 years old and who were
eligible for personal care services under the state Medicaid plan. The
2,008 adults who volunteered for the demonstration completed a baseline
telephone interview and then were randomly assigned to direct their own
supportive services as IndependentChoices consumers (the treatment
group) or to rely as usual on services from home care agencies (the
control group).
Data on quality of care outcomes were collected nine months later,
when all treatment and control group members (or their proxy
respondents) were asked to complete a follow-up telephone interview.
The 1,739 survey respondents answered factual questions about
disability-related adverse events and health problems, and gave their
opinions about (1) satisfaction with care, (2) unmet needs for
assistance with daily activities, (3) quality of life, (4) general
health status, (5) self-care, and (6) ability to perform daily
activities without help from others. Demonstration evaluators then used
statistical models to compare the treatment and control groups on these
outcomes for non-elderly and elderly sample members, while controlling
for a comprehensive set of characteristics that were measured during
the baseline interviews.
consumer satisfaction improved markedly, with no adverse health effects
The resulting analysis showed that the Arkansas Medicaid
beneficiaries who had the opportunity to direct their personal care
services themselves received better care than the control group, which
relied on services from agencies. IndependentChoices significantly
increased the proportion of consumers who were very satisfied with
their care and their paid caregivers, and thinned the ranks of the
dissatisfied. Specifically, IndependentChoices consumers were much more
satisfied with the timing and reliability of their care, less likely to
feel neglected or rudely treated by paid caregivers, and more satisfied
with the way paid caregivers performed their tasks. The program also
reduced some unmet needs for personal assistance services and
substantially enhanced consumers' quality of life. Moreover, it
produced these improvements without compromising consumer health or
functioning. Both elderly and non-elderly adults had better experiences
under IndependentChoices than under agency-directed services, though
impacts on most outcomes were larger for the non-elderly.
findings about costs, caregiver outcomes, and implementation are also
needed
Although the quality and consumer satisfaction results suggest that
the Cash and Counseling model, as implemented under IndependentChoices,
benefits users of personal care services, other issues must be examined
before the model's desirability can be fully confirmed. Public costs
could increase or decrease under IndependentChoices--a critical factor
in times of state budget crises. In companion analyses, evaluators will
examine how IndependentChoices may have affected the use and cost of
personal care, acute care, and long-term care, as funded by Medicaid or
Medicare. They also will examine program effects on consumers' informal
and paid caregivers, and explore implementation lessons of interest to
states. Evaluators will repeat these analyses for Florida and New
Jersey and compare the results across all three states.
cash & counseling consumer profiles
Often the best way to see the effects of a program is by looking at
how it affects individuals.
Grace Wall: Aging with Independence
Grace Wall, of Zephyrhills, Fla., has always been independent. But
at 83, with a host of health problems that include congestive heart
failure, two hip replacements, loss of sight in one eye, and lung
cancer, that independence is harder to maintain.
For six years, Mrs. Wall took care of her paralyzed husband before
he died in 1991. Now she lives alone in a mobile home. She gets her
health care through Medicaid, as well as various personal assistance
services, such as help with shopping and housekeeping `` things that
she has difficulty doing on her own now.
Mrs. Wall used to get those services through a Medicaid contractor.
But in September 2000, she enrolled in Consumer Directed Care (CDC),
Florida's Cash & Counseling program. Mrs. Wall says that CDC has
changed her life.
``I just feel better,'' she says. ``This gets what I need to get
done without much fuss.''
Now Mrs. Wall can hire people she knows and trusts to help her. A
good portion of her $437 monthly budget goes toward buying medications
and health care supplies. She also uses the money for transportation
and to maintain her home.
At first, Mrs. Wall admits that she was daunted by the paperwork.
But her CDC consultant has helped her through that and Mrs. Wall says
the rewards have been well worth the effort.
Mrs. Wall says CDC has enabled her to do things she wouldn't
otherwise have been able to do and made difficult tasks simpler for
her. She also feels more secure with help that is close at hand and
accountable to her. Agency workers, she notes, were not always there
for her when she needed them. ``Now I can rely on my worker, and I
couldn't before. I can get help when I need it.''
Tammy Svihla: Getting Help on Her Own Terms
Single motherhood is tough for a woman on a limited income, but
Tammy Svihla, who has multiple sclerosis (MS), does it all from a
wheelchair without complaining.
Not much ruffles this 36-year-old mother of three. She's conquered
many problems, and she's not about to give in to MS.
She lives in a rented two-story house in High Bridge, N.J., with
her two youngest children (her eldest lives nearby with his
grandparents). Although she is a take-charge type of person, she needs
help with some of the basics, like dressing, showering, getting up and
down the stairs, cooking, cleaning, and shopping. Ms. Svihla says she
gladly accepts help when it comes on her own terms. ``I've had a string
of personal care aides through here, and most of them never lasted very
long,'' she says.
A former retail store manager, Ms. Svihla jumped at the chance to
direct her own care through New Jersey's Personal Preference program.
``I saw it as an opportunity to take control `` to decide for myself
who walks through my front door,'' she says. ``That's very important
when you have young children in the house.''
Today, Ms. Svihla employs two reliable, handpicked helpers: a
neighbor and an aide she found by posting flyers in her neighborhood.
Ms. Svihla manages her monthly $1,035 allowance herself, with minimal
assistance from a bookkeeper provided by the program. About half of the
money covers payroll and taxes, and the rest pays for personal care
items and goods for her home, including incontinence pads, an air
conditioner and fans, and touch lamps. She's also purchased some home
office equipment to help her manage her paperwork better.
Personal Preference, it turns out, is exactly what Ms. Svihla
needed. ``This program just makes sense,'' she says. ``Others should
know about it.''
lessons learned
Consumers like Cash & Counseling. Across all three states, clients
express high levels of satisfaction.
In Arkansas, 96 percent of clients say they would recommend
the program to others; 82 percent say the program has improved
their lives, and 65 percent say the program has improved their
lives a great deal.
In New Jersey, 97 percent of clients say they would recommend
the program to others seeking more control over their personal
care.
However, Cash & Counseling is not for everyone. For some, the
traditional service delivery system works well because they are unable
or don't want to make decisions about their care and arrange their own
services.
Many consumers hire family members or friends to be their personal
caregivers. This may be a reason why satisfaction with the program is
so high `` consumers are hiring people they know and trust to work for
them. During this period of worker shortages, the CCDE allowed
consumers to tap a new work force.
In New Jersey, 63 percent of clients used their monthly
budgets to hire family members, while 20 percent hired friends,
neighbors, or church members.
In Arkansas, Cash & Counseling consumers were more satisfied
with their relationships with their paid caregivers than were
consumers receiving traditional services.
For those under age 65, the program decreased the hours of human
assistance received, but increased the likelihood of purchasing
equipment, assistive devices and home renovations.
Nearly all consumers use the program's financial planning and
bookkeeping services and find them helpful. These services can reduce
clients' fears of being overwhelmed by paperwork.
In Florida, 80 percent of Cash & Counseling clients used a
program consultant to help develop their purchasing plans; of
those, 90 percent found the assistance useful. Ninety-eight
percent of Florida clients said the program's bookkeeper was
managing their financial responsibilities for them.
There have been no major instances of fraud or abuse. Consumers are
managing their budgets responsibly and spending their money the way the
program intends.
looking ahead
The Cash and Counseling approach has been a bi-partisan effort in
all of our states. Each of the three Cash and Counseling states is
working to make consumer-directed care a permanent option for disabled
and elderly Medicaid beneficiaries. In fact, Florida has already
enacted legislation to that effect. At the federal level, the Centers
for Medicare & Medicaid Services (CMS) have issued model waiver
templates encouraging states to develop consumer-directed waiver
program options. Simultaneously, New Jersey and Arkansas have asked CMS
to clarify its policy to allow states to pay for a wide array of
assistive devices and home renovations under Medicaid's personal care
benefit `` without having to rely on waivers.
Meanwhile, The Robert Wood Johnson Foundation, the Office of the
Assistant Secretary for Planning and Evaluation, the Centers for
Medicare and Medicaid Services and the Administration on Aging are
exploring the feasibility of expanding the Cash & Counseling
demonstration to other states. As part of an ``environmental
assessment'' financed by The Robert Wood Johnson Foundation, twenty-one
states have indicated a desire to replicate this basic ``consumer-
directed individualized budget'' model.
I appreciate your invitation to participate in this hearing and
look forward to your questions and comments. For follow-up questions, I
can be reached at [email protected] or by calling (617) 552-4039.
Mr. Norwood. Thank you, Dr. Mahoney. I appreciate it.
Ms. Gittens, you are now recognized for your testimony.
STATEMENT OF PATRICIA GITTENS
Ms. Gittens. Thank you, Mr. Chairman.
My daughter Jewel Stephen is 15 years old. Jewel has a
developmental delay and is a med-waiver client in the State of
Florida.
When the Consumer-Directed Care Project was introduced, I
was given the opportunity to enroll Jewel in the project. Now
she is in the experimental group, and her direct care comes
from her brother, her sister, her teacher's aide, and myself. I
order her therapeutic equipment from a catalog. I purchase her
personal care supplies wherever I can find the best bargain.
She has had a ramp and a wheelchair-accessible bathroom added
onto the house we live in. She has access to Hart-Line
transportation, which provides wheelchair-accessible van pickup
at the door of our home. We have been able to save
considerably. The savings that we accumulate I use to purchase
anything that will enhance Jewel's independence, safety,
welfare, and health.
I am a very strong advocate of the Consumer-Directed Care
Research Project. The project affords the consumer with a wider
range of selection for providers. Since the providers do not
need to be med-waiver-certified, the choice is broader. For
direct care, the consumer can hire family and friends, and they
are more familiar with the consumer. As a result, Jewel is much
more comfortable. Jewel now receives care from her brother, her
sister, and they understood her better, and she is much more
comfortable having them around. In the past we have had to
interview many strangers, and we have had to go over the
initial orientation many times with different people of who
Jewel is, what Jewel likes, what Jewel needs. But now she is
around the people that know her best and love her the most.
The consumer and the family are now in control as opposed
to the support coordinator, and we know what the providers are
billing because the time sheets must be approved by the
representative of the project. The representative in this case
is my mother, and she handles all of the paperwork. Before, in
the med-waiver program, the provider billed directly to the
support coordinator, and there was some accountability lost
because the provider may or may not have actually provided the
service. The consumer was unaware of what was billed. Whenever
I use the monies to spend, I have to account to her present
consultant, who used to be her support coordinator. Once a
month I give her all the receipts of all my expenses. When her
supplies can be purchased at Walgreen's or Sam's Club rather
than an elite group of med-waiver-certified companies, her
chances for flexibility and savings increase.
The services approved through the med-waiver program were
only for medically necessary services, but now it is much more
broad, and Jewel's medical, physical, emotional needs are all
met.
I do have some concerns about the project's execution. I
have witnessed some anxiety in families who don't have any
prior experience in anything of this sort. Because of the
families' taking control, the support coordinators are
encouraged to stay clear unless they are called on for help.
However, I wonder if some families or consumers know the right
questions to ask.
I would love to see a support group in existence. A support
group is one of the perks that were mentioned in the enrollment
stage, but I have not seen it come to fruition. I would also
love to see ongoing training offered at certain intervals in
order to refresh the memories of the consumer and the
consumer's family.
There are two other services I would love to see added to
the budget for the Consumer-Directed Care Research Project.
They are therapy, and wheelchair-accessible vans.
Recently my daughter's speech and occupational therapist
discontinued her service because, according to their report,
she was not progressing significantly enough. I am very
concerned about this, because her school report shows that she
was progressing, and I know that lost therapy could mean lost
mobility and lost skills. So if therapy was on the program, I
or my mother, as the representative, could go into the
community, interview with different therapists, and then hire
them whether they are through Medicaid med-waiver or not.
Also, I am not able to take my daughter out as much as I
would like to due to her size, my size, and the size of our
car. She receives transportation services, which do help;
however, the services are limited to certain times, certain
days, and certain locations. And since she is 15, I believe she
would love to get out more.
In conclusion, it is an honor for me to testify today. I am
extremely grateful that my daughter did happen to be in the
experimental group. Her being in this project has enhanced our
family life tremendously, and I hope and pray that the project
will become a way of life for all interested consumers in the
United States of America.
Thank you, Mr. Chairman.
[The prepared statement of Patricia Gittens follows:]
Prepared Statement of Patricia Gittens
My experience with the Consumer Directed Care Research Project is
both a personal and a professional one.
My daughter--Jewel Stephen--is 15 years old. Jewel has a
development delay, has been diagnosed with agenesis of the corpus
collosum, and is a Med-waiver client in the state of Florida.
My first experience with the med-waiver program was as a Support
Coordinator. In this position, I was responsible for the managing of
services for developmentally disabled adults. The services were made
available by ``providers''. Only med-waiver certified providers could
offer these services. One's being certified required the successful
completion of a extensive application process.
When the Consumer Directed Care Project was introduced, I was given
the opportunity to enroll my daughter. The enrollment process involved
the completion of a basic application form and survey, which was
completed by her support coordinator. Once the application was
submitted, it was keyed into a computer system in Tallahassee. The
computer randomly assigned half of all the applications into the
control group and half of all the applications into the experimental
group. In the control group, everything remains the same. The client
still has a support coordinator and the client's services are still
made available by med-waiver certified providers.
In the experimental group, the client and/or the client's family
now gains control of the budget, the services provided, and who
provides the service. My daughter, Jewel, was assigned to the
experimental group.
Shortly thereafter, I was asked to serve as the Outreach and
Enrollment employee for the Consumer Directed Care Research Project
(``the Project''). My new position involved going to family homes in
Hillsborough and Manatee Counties of Florida and conducting a
presentation to explain the Project and answer any possible questions.
If the family decided to enroll, I would complete the application
packet for them and forward it to Tallahassee.
If the consumer was assigned to the experimental group, I would
also review the purchasing plan that the family submitted. The
purchasing plan is a budget proposal which itemizes the services needed
and the projected cost of services. The main components of the
purchasing plan are:
Directly Hired Workers (ie. Personal Care Attendants, Respite
Workers, Homemakers, Companions); Therapeutic Equipment (ie.
communication devices, eating utensils); Personal Care Supplies (ie.
gloves, shampoo, incontinent products, lotion); Modification of
Residence (ie. wheelchair ramps, wheelchair accessible bathrooms);
Modification of Vehicles (ie. wheelchair lift); Community Services (ie.
transportation, lawn care); Cash (ie. prepared meals); Savings; and,
Emergency Back-up.
Jewel's direct care comes from her brother, her sister, her
teacher's aide, and myself. I order her therapeutic equipment from a
catalog. I purchase her personal care supplies wherever I can find the
best bargain. She has had a ramp and a wheelchair accessible bathroom
added onto the house we live in. She has access to Hart-Line
transportation which provides wheelchair accessible van pickup at the
door of our home. We have been able to save considerably. The savings
are to be used for the purchase of anything that will enhance the
welfare, independency, safety, and/or health of the consumer.
The management of the purchasing plan is the consumer's
responsibility. The consumer is not to ask the consultant (formerly
known as the support coordinator) to do things she is responsible for.
Information about roles and responsibilities can be gathered from the
CDCRP consumer notebook. If there are still questions, the consumer is
then encouraged to talk to the consultant.
The purchasing plan should be updated if the consumer:
changes the hourly rate pay of one or more employees
has a change in the monthly budget amount
adds a new purchasing category
changes the savings amount or planned savings purchases
has a change in needs
has a change in the emergency backup plan
has an account balance more than 1\1/2\ times the monthly
budget
accumulates excess amounts of cash
The consumer can be flexible in the spending of the allotted
funds--as long as she doesn't spend more than the total available
amount in the account balance. The consumer must keep track of unpaid
amounts such as payroll and invoices. Also, all properly authorized
employee timesheets must be submitted to Personal Attendant Accounting
Services, Inc in Virginia (PAAS). PAAS retains the actual monies of
each consumer's budget. Bookkeeping services and quality reviews are
conducted by PAAS. PAAS pays employees by mailing payroll checks to the
project representative. The representative is a family member or friend
the consumer chooses to handle all paperwork involved in the project.
(Jewel's representative is my mother).
There are rare occasions when a consumer may be disenrolled from
the project. Disenrollment from CDCRP is usually voluntary, but may
occur by necessity. Disenrollment is usually due to loss of medicaid
eligibility or death of the consumer.
I am a very strong advocate of the Consumer Directed Care Research
Project. The project affords the consumer with a wider range of
selection of providers. Since the providers do not need to be med-
waiver certified, the scope of choice is broader. For direct care, the
consumer can hire family and friends who are more familiar with the
consumer. For professional services, the consumer can consider (and
possibly interview) more agencies. As a result, the consumer is much
more comfortable.
The consumer and the family are now in control as opposed to the
support coordinator. The consumer knows what the providers are billing
because the time sheets must be approved by the consumer. In the med-
waiver program, the provider billed directly to the support
coordinator. The accountability was lost, because the provider may or
may not have actually provided the service. The consumer was unaware of
what was billed.
When supplies can be purchased at Walgreens or Sam's Club, rather
than an elite group of med-waiver certified companies, flexibility and
the chance of savings increase.
The services approved through the med-waiver program are
exclusively for ``medical necessity'' and the approval process is much
more stringent than that for the project.
I do have some concerns about the project's execution. I have
witnessed some anxiety in families who have no prior experience in
anything of the sort. The support coordinators are encouraged to ``stay
clear'' unless they are called on for help (for the most part).
However, I wonder if some families or consumers know the right
questions to ask. I would love to see a support group in existence. A
support group is one of the perks that were mentioned in the outreach
and enrollment stage, but, I have not seen it come to fruition.
I would also love to see ongoing training offered at certain
intervals in order to refresh the memories of the consumer and the
consumer's family.
My daughter happens to have an excellent consultant (formerly known
as support coordinator). She is reliable and professional. I hope every
other consumer in the project receives the same quality of consultant
help.
There are two other services I would love to see added to the
budget for the Consumer Directed Care Research Project. They are:
therapy and wheelchair accessible vans. Recently, my daughter's speech
and occupational therapists discontinued service because, according to
their report, she ``was not progressing significantly enough''. I am
very concerned about this because her school report shows that she was
progressing and I know that lost therapy could mean lost mobility and
lost skills for her. Also, I am not able to take my daughter out as
much as I would like to--due to her size and the size of our car. She
receives transportation services which help; however, the services are
limited to certain times, certain days, and certain locations. Since
she is 15, I believe she would love to get out more.
In conclusion, it is an honor for me to testify about the project.
I am extremely grateful that my daughter happened to be in the
experimental group. Her being in the project has enhanced our family
life tremendously. I hope and pray that the project will become a way
of life for all consumers in the United States of America. Thank you.
Mr. Norwood. Thank you very much.
Mr. Secretary, you are recognized now for your statement.
STATEMENT OF TERRY F. WHITE
Mr. White. Good morning, Mr. Chairman and members of the
committee. I want to thank you for your invitation and my
opportunity to be here before you today to talk about Consumer-
Directed Care.
The Florida Department of Elder Affairs has been pleased to
join the Robert Wood Johnson Foundation, the U.S. Department of
Health and Human Services, and Arkansas and New Jersey in the
national Cash and Counseling demonstration project and
evaluation.
The Florida program called Consumer-Directed Care was
designed to provide consumers more flexibility, choice, and
independence in determining and arranging their own care. I
stand here today as a strong supporter of consumer direction,
because I know it improves the quality of life by restoring
self-reliance and dignity.
The Florida model challenges the traditional mindset of the
last 38 years in terms of the creation of the Medicaid program
with the understandings that only the care managers are the
only folks that can direct care for their clients, and that the
Medicaid service recipients are incapable of managing their own
care effectively and responsibly.
Consumer-Directed Care puts into practice Governor Bush's
commitment to increasing choices for frail elders and disabled
Floridians by providing them the opportunity to be an active
participant in their health care decisions.
Before discussing the Florida model, I would like to share
with you the impact that this program has had on one of our
clients, Lois Duffy. In her own words, quote: My existence has
become a real life. Now, I purchase the food I want and need
rather than just what I can think of sitting here alone,
unquote.
Her worker Carlene has also benefited from the partnership,
and in her words: Working for Lois has been a reward for both
of us. For myself, I needed a part-time job with flexible
hours; for Lois, it has given her a new lease on life.
Now, if you would, contrast Lois' experiences with that of
other Medicaid waiver experiences who are at risk because they
are not receiving the services that can help them maintain
independence through the traditional Medicaid system.
The enrollment group for the Consumer-Directed Care Project
includes frail elders, developmentally disabled children and
adults, and physically disabled adults already participating in
Medicaid waiver programs. Our department administers the
project in collaboration with other State health and human
service agencies. Allowable purchases include services and
items such as personal care, homemaking, consumable medical and
personal care supplies, adaptive devices, home repairs and
maintenance, and errands and shopping assistance.
Florida implemented Consumer-Directed Care through our
existing networks of case managers and support coordinators,
who now become known as consultants to our Consumer-Directed
Care clients. This represents a major paradigm shift from the
traditional service delivery model. Instead of case managers
coordinating the care, the consumer develops a plan based on
their own individual needs.
To date, Florida has enrolled 2,820 participants in the
Consumer-Directed Care model, including 814 elders. Based on a
survey conducted by our Department, 94.4 percent of the
respondents said that they were either satisfied or very
satisfied with the project. There will be a formal evaluation
in 2005.
Governor Bush and the Florida Legislature believed in this
program so much that they created a statewide Consumer-Directed
Care model in the 2002 legislative session, and we are
currently working on that to implement that statewide. We have
learned a number of valuable lessons from participating in this
project, and I would like to share those with you.
First, consumer direction can increase the quality of life
and consumer satisfaction. Consumers potentially can receive
more services with an increase in quality.
Second, consumer direction care can work for frail elders.
Though it was utilized in the disability communities since the
1980's, it was more challenging to implement this within the
older population in Florida. However, when the concept spread,
it became very, very popular, and now we have folks really
wanting to become involved in the system.
Third, concerns about potential fraud and abuse in consumer
direction care are unfounded. Florida's Consumer-Directed Care
Project, like that of Arkansas and New Jersey's, encounter no
instances of fraud and abuse.
Fourth, one size does not fit all. Consumers must be
willing and able to manage their own care or have a
representative who can act on their behalf. It is true that
some individuals require a more formalized approach.
Fifth and last, States that implement Consumer-Directed
care programs should consider choice and quality issues. We
have to be careful that we do not create an overabundance of
options that could potentially lead to fiscal and operational
challenges that could ultimately harm the consumer.
We have stretched the Medicaid program in an attempt to
wrap it around the needs of today's population, yet there are
still 47,000 Floridians who are potentially eligible for
Consumer-Directed Care but have no option at this point. The
Consumer-Directed Care model is, in fact, a model, and one we
would like to grow for our elders and disabled. As you consider
reforms for Medicaid, this is an excellent model that shows an
example of State innovation.
While you are working in the direction of comprehensive
Medicaid reform, I would like to highlight some policy
recommendations from the Medicaid world which we must operate
in, and that we base this on our experiences.
First, increase the flexibility in the delivery of home
community-based care services. Florida would like to have the
ability to administer the Consumer-Directed Care model without
the limitations and burdens of a waiver. With the flexibility
to develop our own programs, we could make a more efficient use
of our limited resources and meet the needs of our most
vulnerable citizens.
Second, consumer direction helps address worker shortage
issues, especially in our rural areas, by adding family members
and friends to the available pool of workers.
Third, consider broadening the definition of personal care
under the Medicaid State plan services. We would like to join
our partners in Cash and Counseling demonstration projects in
requesting a broader definition of personal care that would
include home modification and assistive technology.
In closing, I thank you again for the opportunity to be
before you, and I would be happy to answer any questions later.
[The prepared statement of Terry F. White follows:]
Prepared Statement of of Terry F. White, Secretary, Florida Department
of Elder Affairs
Good morning, Mr. Chairman and Members of the Committee. Thank you
for your invitation and for the opportunity to address the Committee on
improving Medicaid beneficiary access to quality care through a
consumer-directed model of services.
The Florida Department of Elder Affairs has been pleased to join
the Robert Wood Johnson Foundation, the U.S. Department of Health and
Human Services, and Arkansas and New Jersey, in the national Cash &
Counseling Demonstration and Evaluation project. The Florida program,
called ``Consumer-Directed Care,'' was designed to provide consumers
more flexibility, choice and independence in determining and arranging
their own care.
I speak to you today not only as the Secretary of the Florida
Department of Elder Affairs, but also as a former executive director of
an Area Agency on Aging in southwest Florida. It was in my former role
at the Area Agency on Aging that I was initially skeptical about
Consumer-Directed Care, because I was concerned about the potential for
fraud and abuse. Under the Consumer-Directed Care model, Medicaid
recipients can hire family members and friends as paid workers. My
apprehension was based on the concern that some family members or
friends might take advantage of their loved ones, by accepting payment
without actually providing the services for which the money was
intended. After viewing the program firsthand for just a short period
of time, however, my concerns were quickly allayed. I am pleased to
tell you that I stand here today as a strong supporter of consumer
direction, because it improves quality of life by restoring self-
reliance and dignity. The Florida model challenges the traditional
mindset, fostered over the 38 years since the creation of Medicaid,
that the individuals charged with overseeing and coordinating care for
Medicaid recipients know what is best for their clients, and that
Medicaid Waiver service recipients are incapable of managing their own
care effectively and responsibly. Consumer-Directed Care puts into
practice Governor Bush's commitment to increasing choices for frail
elder and disabled Floridians, by providing them with the opportunity
to be active participants in their health care decisions.
Before discussing the implementation of the Florida model, the
project's result and lessons learned, I would like to take a brief
moment to share with you the impact Consumer-Directed Care has had in
the life of one of our clients, Lois Duffy. In her own words, ``How
different is my life now? Setting up days and times for [my worker's]
help is a cooperative effort and I am glad to say it has never been a
problem. My existence has become a real life! Now I [go to the store
to] purchase the food I want and need, rather than [requesting] just
what I can think of [while] sitting at home alone. She also takes me to
my average of four doctor's appointment per month. She comes in the
office with me and afterwards, on the ride home, we discuss what we
each understood the doctor to say; it's amazing how much recall she has
and how very helpful to me it is to have her input.'' Her worker,
Carlene, has also benefited from this partnership: ``Working for Lois
has been a reward for both of us. For myself, I needed a part-time job
with flexible hours. Also, I needed to feel like I was needed. For
Lois, it's given her a new lease on life. She is finally able to trust
the person working in her home, she's able to have the hours she needs,
and she's had the transportation to doctors that's been reliable. We
never run out of things to talk about and have built a nice friendship
in the process.''
Contrast Lois' experience with that of many other Medicaid Waiver
recipients, who tell us that they are unable to obtain the services
they want when they want them, because of worker shortages or other
problems with the traditional model of care. Many of these consumers
sit at home alone, and they are at risk because they are not receiving
the services that can help them remain independent, yet the traditional
Medicaid system does not allow them to take advantage of support
systems that are available right in their community.
implementation
The enrollment group for the Consumer-Directed Care Project
includes frail elders, developmentally disabled children and adults,
and physically disabled adults who were already participating in either
the 1915(C) Aged and Disabled Medicaid Waiver or the 1915(C)
Developmental Disabilities Program Home and Community-Based Services
Medicaid Waiver. In order to provide limited cash allowances to
consumers and to allow responsible family members (such as spouses and
parents) to be hired as paid workers, Florida was granted a 1115
Medicaid Waiver for this project from the Centers for Medicare and
Medicaid Services. The 1115 Medicaid Waiver offers options that surpass
the traditional 1915(C) Waiver, but it is more difficult to obtain,
much more complicated to administer, and requires an extensive
evaluation component. Though we support the objective evaluation of
public programs, we feel we have enough data and information to support
the expansion of consumer-directed options. The evaluation requirement
under the 1115 Waiver poses an administrative burden and diverts
resources that could be used to serve additional consumers.
The Florida Department of Elder Affairs, as the grantee
organization, administers the project in collaboration with a statewide
workgroup that includes other state health and human services agencies:
the Agency for Health Care Administration, the Department of Children
and Families Developmental Disabilities Program and Adult Services
Program, and the Department of Health Brain and Spinal Cord Injury
Program. The project was implemented in 19 of Florida's 67 counties for
elders and physically disabled adults, and statewide for
developmentally disabled children and adults. Consumers who were
randomized into the treatment group benefit in the following ways:
develop a purchasing plan and manage the funds assigned to
them;
receive support services from a consultant (case manager or
support coordinator) and a fiscal intermediary/bookkeeper;
decide which allowable services best meet their needs;
hire and direct employees and independent contractors who may
be family members or friends, and/or agency providers; and
assess the quality of services received.
Allowable purchases include the following services and items:
personal care; homemaking; consumable medical and personal care
supplies; adaptive devices, wheelchair ramps, grab bars; home repairs
and maintenance; errands/shopping assistance; and pest control/yard
work.
To help ensure budget neutrality, which is required by the 1115
Medicaid Waiver, the consumer's budget is based on actual expenditure
history, or it is determined through use of a discounted care plan. The
discount rates, which were developed at the beginning of the project
based on historical expenditures in the Medicaid program, range from
83% for physically disabled adults to 92% for developmental disabled
adults and children. These percentages represent the actual amount of
Medicaid dollars that clients were able to access under the
traditional, case managed service delivery model. This means that
consumers have been unable to access 8-17% of their approved Medicaid
budgets, because of problems such as worker shortages. The consumer-
directed model, therefore, offers increased protection for consumers
who find that agency workers are not available.
Florida implemented Consumer-Directed Care through the existing
networks of case managers and support coordinators. Under the project,
these individuals are ``consultants'' who assist and empower consumers,
and monitor expenditures and the potential for fraud and abuse. This
represents a major paradigm shift from the traditional service delivery
model, where case managers coordinate and direct the care, based on the
results of assessments. Under consumer direction, the purchasing/care
plans are developed by the consumer, and are frequently revised as
conditions change. A viable backup plan is required to assure
continuity of services in the event a worker or agency representative
is terminated or otherwise unavailable.
project results
From April 2000 to September 2002, Florida enrolled 2,820 consumers
in Consumer-Directed Care, including 1,004 adults; 1,002 children; and
814 elders. Approximately one-half of these individuals were assigned
to the treatment group, and 917 consumers--420 children, 374 adults and
123 elders--are still managing budgets and receiving services under
this program today.
Though the formal project evaluation conducted by Mathematica
Policy Research, Inc. is not completed, early results show very high
consumer satisfaction, increased access to needed services, and an
overall improvement in quality of life for participants. The formal
evaluation, which will be completed in 2005, will analyze three
components: impact, cost and implementation. Other, less formal
evaluations support these results: fully 94.4% of 251 respondents
surveyed by the Department of Elder Affairs in April and May 2002
indicated that they were ``satisfied'' or ``very satisfied'' with the
project.
Based in large part on feedback from existing consumers and
advocacy groups, Governor Bush and the Florida Legislature created a
new statewide Consumer-Directed Care program during the 2002 session.
Governor Bush signed the bill into law on May 1, 2002. The new program
will be administered by the Agency for Health Care Administration,
Florida's Medicaid Agency, in collaboration with the other departments
who have participated in the Cash and Counseling Demonstration. The
Agency for Health Care Administration has received preliminary approval
from the Centers for Medicare and Medicaid Services on the waiver
amendment that is needed to implement the new statewide program.
lessons learned
Florida has learned a number of valuable lessons from participating
in this project.
1. Consumer direction can increase quality of life and consumer
satisfaction. In addition to offering more flexibility, choice and
independence, Consumer-Directed Care improves quality of life and
consumer satisfaction, because services are tailored to the unique and
individual needs of the consumer. Under this approach, consumers can
receive more services, with an increase in quality, for the same
budget. By hiring workers directly, they do not have to pay agency
overhead costs.
2. Consumer direction can work for frail elders. Though elements of
consumer direction have been utilized in the disability community since
the 1980s, many policy makers have questioned the applicability for a
frail elder population. Though it was more challenging to implement
Consumer-Directed Care among the elder population in Florida due to
lack of available family supports, the concept became very popular once
the initial group of consumers began to see the benefits of this
approach. In addition, some case managers who were originally
apprehensive about consumer direction became strong advocates once they
began to see the positive impact on the clients they served.
3. Concerns about the potential for fraud and abuse in consumer
direction are unfounded. Florida's Consumer-Directed Care project, like
the Arkansas and New Jersey Cash & Counseling projects, encountered
virtually no instances of fraud and abuse. Though the project provides
consultants and a fiscal intermediary to support consumers, ultimately,
it is the consumer or their representative who defines quality and
monitors expenditures. In fact, consumers who encountered problems with
workers who were family members did not hesitate to terminate
employment if the family member did not perform satisfactorily.
4. One size does not fit all. Consumers who participate in
Consumer-Directed care must be willing and able to manage their own
care or have a representative who can act on their behalf. We realize
that we cannot take a ``one size fits all'' approach to providing
health care for Medicaid recipients. Consumers who find the management
of finances challenging, or do not have built-in family or community
supports, may require a more formalized approach to help them maintain
their independence. The benefits of consumer direction--increased
access to quality services; more control, flexibility and independence
for consumers--lead us to believe that this model will help many of our
most vulnerable citizens remain independent in the community for longer
periods of time, while dramatically improving the quality of their
lives.
5. States that implement consumer-directed programs should
consider choice and quality issues. Though multiple options for
consumer supports are preferred, there are issues involving economies
of scale and quality that need to be considered in a consumer-directed
program design. If there are an unlimited number of consultants, and
each consultant has only a limited number of consumers to assist, some
consultants may not be able to acquire the experience and develop the
skills necessary to truly empower consumers. An overabundance of
consultants could also lead to challenges in the areas of training and
technical assistance. While multiple options for fiscal intermediaries
may benefit the consumer, too many options may create a financial
hardship for each company, ultimately harming the consumer.
policy recommendations
We have stretched the Medicaid program in an attempt to wrap it
around the needs of today's population. Yet, there are still 47,000
Floridians who are potentially eligible for consumer-directed care and
who do not have this option. The consumer directed care model is in
fact a model, and one we would like to grow for our elders and
disabled. As you consider reforms to Medicaid, this model is an
excellent example of the potential of state innovation.
While you are working in the direction of comprehensive Medicaid
reform, I would like to highlight some policy recommendations for the
Medicaid world we must operate in today. Based on experiences with
Consumer-Directed Care, the Florida Department of Elder Affairs would
ask you to consider the following:
1. Increase flexibility in the delivery of Home and Community-Based
Services. In order to implement a fully consumer-driven model of care,
states need flexibility to give small cash allowances and to allow
responsible family members to be paid as workers. The current mechanism
that provides this flexibility, the 1115 Medicaid Waiver, is much more
labor intensive to administer than the 1915(C) Waiver. Though the
streamlined Independent Choice waivers produced by the Centers for
Medicare and Medicaid Services have helped encourage states to adopt
consumer-directed models, Florida would like to have the ability to
administer consumer-directed service models without the limitations and
burdens of a waiver. With the flexibility to develop our own program
designs, we can make more efficient and effective use of our limited
resources, while ensuring that the needs of Florida's most vulnerable
citizens are met.
2. Consumer direction helps address worker shortage issues. This
approach helps consumers, especially those in rural areas, obtain
increased access to services. This is a major issue for Florida and for
all states, and the problem will only worsen with the aging of the baby
boomers.
3. Consider broadening the definition of personal care under
Medicaid State Plan Services. Arkansas and New Jersey, our partners in
the Cash & Counseling Demonstration and Evaluation, offered a consumer-
directed approach to Medicaid State Plan personal care assistant (PCA)
services. A broader definition of personal care would allow these
states, as well as others, to provide increased supports for frail and
disabled consumers. Presently, the federal definition of personal care
refers to ``human assistance.'' We join our colleagues in these other
states in suggesting that this language be broadened to include home
modifications, assistive technology, and other services and appliances
that would enable and encourage individuals with disabilities to meet
their personal care needs.
I want to thank you again for allowing me the opportunity to speak
before the Committee today. I will be happy to respond to any questions
you might have.
Mr. Norwood. Thank you, Mr. Secretary.
Mr. Williams, you are now recognized for your opening
statement.
STATEMENT OF BOB WILLIAMS
Mr. Williams. I have abbreviated my prepared comments
somewhat to cut to the chase, hopefully. What I think I have to
offer you most today, however, comes not just from my knowledge
of the Medicaid program, its strengths and ways it must be
improved upon, but from the obvious fact that, like others
testifying today, I rely a lot on help from others and
technology like I am using now to live the life I have created
for my family and myself.
I have always had the good fortune of being employed and
having employer-based insurance coverage, so I have never been
on Medicaid. But like the others here, and over 80 percent of
the estimated 12 million Americans of every age who need this
help, I have always gotten it from family, friends, and, for
the last decade, mostly my wife Helen.
I will draw on these blends of perspectives to try to
answer two key questions: What are the practical lessons we can
and ought to learn and apply from the Cash and Counseling
demonstration? And, equally importantly, what are some things
that we cannot, and should not, assume or read into the
findings of this demo?
Like most other successful experiments, the demo set out to
provide an obvious answer to a common-sense question: Do people
with disability want to have a great deal of control over the
quiet, intimate forms of help and supports that make our lives
possible? The answer to that question is, of course. Yes, we
do. And it is important that, as policymakers, you understand
the reasons why this is so.
The things that I and others need help with, eating,
showering, dressing, cleaning one's backside, are all essential
and very private, personal matters; the type of things, in
short, that you want someone you know well, can rely upon,
value, and trust implicitly, that you want to work with you,
and not a complete stranger, regardless of how competent or
proficient such a person might be. That is one of the main
reasons why people want the freedom to use a friend, someone in
their family, or another individual of their own choosing to
provide the assistance they need daily.
Two other reasons have to do with what I will call
availability and proximity. Now that I have left government,
for example, I work mostly from home. The major reason for this
is that Helen also is home a lot of the time. Thus, while I do
not require a great deal of help during the day, I know, when I
do, that she will typically be close at hand. Similarly, if
someone needs help preparing a meal or going shopping, it might
make sense to hire a friend or neighbor to do it, or to have a
meal or grocery brought to their front door by a local
restaurant or something like the Giant Store's Peapod delivery
service.
This is the potential strength and beauty of an
individualized budget approach such as the one used in Cash and
Counseling. It enables the person with the disability or the
parents of the child with the disability to decide how to use
limited Medicaid dollars in ways that best ensures their
independence and basic well-being. But it is important to
acknowledge that the approach is no panacea. It has its
limitations and pitfalls that Congress, the administration, and
the States, as well as the disability and aging communities,
must actively work to avoid.
An approach like Cash and Counseling generally seems to
work well for people when the following is true in their lives:
First, the individual has family and friends who already are
helping them out a good bit or could help them find others who
could offer the needed assistance. That is, there is already a
network of support they can tap both to recruit and pay people
to provide services for them.
Second, the money allocated in the individualized budget
must be adequate and be able to be adjusted whenever the needs
of the person change. There should be clear nationwide
standards for determining and readjusting such budgets. It
would be wrong for Congress, in my view, to provide States
complete license in this regard. I can comment on this further
during your questioning, but one of my greatest fears about
this approach is that, based on the continuing State budget
crises, that absent basic Federal safeguards, that at least
some States would take advantage of it not simply to encourage
consumer choice while managing costs responsibly, but to cut
costs in ways that are extremely harmful to the health and
independence of children, adults, and older Americans with
disabilities. You should not allow this to happen.
I said at the start that there were some things that we
cannot and should not assume or read into the findings of this
demo. I would like to briefly highlight what they are, if I
might.
The first is the assumption that Cash and Counseling is
somehow a silver bullet that will in itself dramatically
increase access to Medicaid community living services in States
that take it up. This approach can certainly be a critical
piece for many needing access to these services and supports,
but it is not the total solution, nor is it an approach that
everyone can or wants to use. As we have heard, it works well
for people who already have family and friends and can use the
money to supplement the help they already receive, but it might
not work so well for someone without a natural support network
to turn to who wants to get out of a nursing home or avoid
going in one altogether. For this reason, States that offer
this option should do so on a purely voluntary basis and in a
manner that does not disadvantage those who do not want to take
it up.
Another assumption that seems to be being vented, that this
demo's results may justify the so-called cashing out of the
entire Medicaid benefit, including medical care and
prescription drug coverage. I would say a couple of things on
this. There is nothing in the demo's basic intent, design, or
findings that would support such a policy leap. And, even more
importantly, expecting people to know how to navigate,
purchase, and manage their entire health and medical care is
not only unrealistic, it would be setting many up to take a
serious fall or worse.
My strong plea, therefore, is that, if this notion is put
forward, Congress rejects it. Hence, if Congress authorizes
other States to engage in similar activities, it should limit
them to doing so with regard to personal care and similar
services only, as the demonstration itself did.
The individualized budget approach embodied in Cash and
Counseling is certainly one important way that States can offer
people with disabilities of every age more choice and control
over their lives and the services they need, but it is not the
only one. Many States are using other methods to offer people
the same choice and control. In the scheme of things,
therefore, with the fate of Medicaid and the lives of those who
rely on it very much up in the air, I frankly think that there
are more pressing matters Congress needs to concern itself
with.
There is much I object to about the President's larger
Medicaid restructuring proposal which I will not go into now,
but another budget proposal of President Bush that deserves the
attention and wide bipartisan support in Congress is called the
Money Follows the Person Initiative. Simply put, the initiative
would fully reimburse States for 1 year of Medicaid home and
community-based services for children, adults, and older
Americans with disabilities who move from institutions into
their own homes and communities. After the initial year, States
will be responsible for matching payments at their usual
Medicaid matching rate. It also would buildupon existing
States' success stories in Texas, Wisconsin, Michigan, and
Washington.
Once again, I want to thank you for this opportunity to
appear before you this morning, and even more so for your
interest in these critical issues.
[The prepared statement of Bob Williams follows:]
Prepared Statement of Bob Williams, Co-Director, Advancing Independence
Good morning, Mr. Chairman and Members of the Committee. Thank you
for asking me to testify on what we as a Nation can glean and apply
from the Cash and Counseling demonstration. For the record, I am Bob
Williams, the co director of Advancing Independence, a forum that
promotes responsible changes to Medicare and Medicaid needed to enhance
the health and independence of Americans with disabilities of all ages.
Prior to this, I was an advisor to then HHS Secretary Donna Shalala.
The Office on Disability, Aging and Long Term Care Policy in ASPE that
I headed had a vital role in the design and funding of the demo, along
with CMS, the participating States and the RWJ foundation. But, the
hard work to launch the project was done well before I joined ASPE. So,
the credit goes to others.
What I think I have to offer you most today, however, comes not
just from my knowledge of the Medicaid program, its strengths and ways
it must be improved upon. But from the obvious fact that like others
testifying today, I rely a lot on help from others and technology like
I am using now to live the life I've created for my family and myself.
I've always had the good fortune of being employed and having employer
based insurance coverage. So, I've never been on Medicaid. But, like
the others here, and over 80% of the estimated 12 million Americans of
every age who need this help, I've always gotten it from family,
friends, and for the last decade, mostly my wife, Helen.
I will draw on these blends of perspectives to try to answer two
key questions. What are the practical lessons we can, and ought to,
learn and apply, from the Cash and Counseling demonstration? And,
equally importantly: What are some things that we cannot, and should
not, assume or read into the findings of this demo? Like most other
successful experiments, the demo set out to provide an obvious answer
to a common sense question. Do people with disabilities want to have a
great deal of control over the quite intimate forms of help and
supports that make our lives possible?
The answer to that question is, of course, yes we do; and, it's
important that as policy makers you understand the reasons why this is
so. The things that I and others need help with: eating, showering,
dressing, cleaning one's back side, are all essential and very private,
personal matters. The type of things, in short, that you want someone
you know well, can rely upon, value and trust implicitly that you want
to work with you. And, not a complete stranger, regardless of how
competent or proficient such a person might be. That is one of the main
reasons why people want the freedom to use a friend, someone in their
family or another individual of their own choosing to provide the
assistance they need daily. Two other reasons have to do with what I'll
call, availability and proximity.
Now that I've left government, for example, I work mostly from
home. A major reason for this is that Helen also is home a lot of the
time. Thus, while I do not require a great deal of help during the day,
I know when I do that she will typically be close at hand. Similarly,
if someone needs help preparing a meal or going shopping, it might make
sense to hire a friend or neighbor to do it. Or, to have a meal or
grocery brought to their front door by a local restaurant or something
like the Giant Stores' Peapod delivery service. This is the potential
strength and beauty of an individualized budget approach such as the
one used in Cash and Counseling. It enables the person with a
disability or the parents of a child with a disability to decide how to
use limited Medicaid dollars in ways that best ensures their
independence and basic well being.
But, it's important to acknowledge that the approach is no panacea.
It has its limitations and pitfalls that Congress, the Administration
and the States as well as the disability and aging communities must
actively work to avoid. An approach like Cash and Counseling generally
seems to work well for people when the following is true in their
lives. First, the individual has family and friends who already are
helping them out a good bit or could help them find others who could
offer the needed assistance. That is, there is already a network of
support they can tap both to recruit and pay people to provide services
for them. Second, the money allocated in the individualized budget must
be adequate and be able to be adjusted whenever the needs of a person
change. There should be clear nationwide standards for determining and
readjusting such budgets. It would be wrong for Congress, in my view,
to provide States complete license in this regard. I can comment on
this further during your questioning, but one of my greatest fears
about this approach is that, based on the continuing State budget
crises, that absent basic federal safeguards that at least some States
would take advantage of it. Not simply to encourage consumer choice
while managing costs responsibly, but to cut costs in ways that are
extremely harmful to the health and independence of children, adults
and older Americans with disabilities. You should not allow this to
happen.
I said at the start that there were some things that we cannot, and
should not, assume or read into the findings of this demo. I'd like to
briefly highlight what they are if I might. The first is the assumption
that Cash and Counseling is somehow a silver bullet that will in itself
dramatically increase access to Medicaid community living services in
States that take it up. This approach can certainly be a critical piece
for many needing access to these services and supports. But, it is not
the total solution. Nor, is it an approach that everyone can or wants
to use. As we have heard, it works well for people who already have
family and friends, and can use the money to supplement the help they
already receive. But, it might not work so well for someone without a
natural support network to turn to who wants to get out of a nursing
home or avoid going in one altogether. For this reason, States that
offer this option should do so on a purely voluntary basis and in a
manner that does not disadvantage those who do not want to take it up.
Another assumption that seems to be being hinted at is that this
demo's results may justify the so called, cashing out, of the entire
Medicaid benefit, including medical care and prescription drug
coverage. I'd say a couple of things on this. There is nothing in the
demo's basic intent, design or findings that would support such a
policy leap. And, even more importantly, expecting people to know how
to navigate, purchase and manage their entire health and medical care
is not only unrealistic, it would be setting many up to take a serious
fall or worse. My strong plea, therefore, is that if this notion is put
forward, Congress rejects it. Hence, if Congress authorizes other
States to engage in similar activities it should limit them to doing so
with regard to personal care and similar services only as the
demonstration itself did.
The individualized budget approach embodied in Cash and Counseling
is certainly one important way that States can offer people with
disabilities of every age more choice and control over their lives and
the services they need. But, it is not the only one. Many States are
using other methods to offer people the same choice and control. In the
scheme of things, therefore, with the fate of Medicaid and the lives of
those who rely on it very much up in the air, I frankly think that
there are more pressing matters Congress needs to concern itself with.
There is much I object to about the President's larger Medicaid
restructuring proposal, which I will not go into now. But, another
budget proposal of President Bush that deserves the attention and wide
bipartisan support in Congress is called the Money Follows the Person
initiative. Simply put, the initiative would fully reimburse States for
one year of Medicaid home and community-based services for children,
adults and older Americans with disabilities who move from institutions
into their own homes and communities. After the initial year, States
will be responsible for matching payments at their usual Medicaid
matching rate. It also would build upon existing state success stories
in Texas, Wisconsin, Michigan and Washington.
Once again, I want to thank you for this opportunity to appear
before you this morning, and even more so for your interest in these
critical issues. I will be pleased to respond to questions or concerns
you have during the questions and answer period.
Mrs. Wilson [presiding]. Thank you very much, Mr. Williams.
I would like to now shift into questions, and there is a
couple of things that I would like to ask you to expand upon,
if you could. Dr. Mahoney, you wanted to elaborate at the end
of your statement. I think you were going to go into looking
ahead and what needs to be done in order to make this permanent
in some States, but also make it more likely that this model
propagates across the country. And I wonder, I wanted to give
you an opportunity to elaborate.
Mr. Mahoney. Thank you very much. I will give a few
examples.
What Florida did in passing, I understand unanimously,
legislation that built in this consumer-directed option for the
future I think could serve as one type of a model.
A second one, the States of New Jersey and Arkansas have
written to CMS and asked, for instance, if the language for the
Medicaid personal care benefit, which now is limited to hands-
on human assistance, could be broadened to include the ability
to--under the personal care benefit, purchase assisted devices,
home renovations, things that meet that individual's personal
care need. And we have examples from Cash and Counseling.
A third example that I am very pleased with is the Robert
Wood Johnson Foundation in these last few months has authorized
an environmental assessment where we have had teleconferences
48 States took part in, and the follow-up is we wanted to talk
with States that were interested in replicating this model. And
we have had individual calls with 21 States at this stage. So
between the foundation and Health and Human Services, we really
are looking at the need for seed money and technical assistance
for States to really replicate this individualized budget
approach.
Mrs. Wilson. Secretary White, I had two questions for you.
One was, are any of the Indian tribes involved in this
experiment, or have you worked with IHS at all for any
Medicaid-eligible tribal members?
And the second one, and I will do them back to back here
and let you elaborate, is you said in your testimony that you
were initially worried about the potential for fraud in
consumer-directed care, but that those fears were not realized.
What is it inherent in this program which makes it--which
satisfied your fears or calmed your fears?
Mr. White. The first question with respect to the Native
Americans, not to my knowledge are there any of those
individuals involved in this project as of yet. When it goes
statewide, I am assuming that it will occur.
In response to your second question, I was an area Agency
on Aging director in southwest Florida for almost 10 years, and
I was concerned about the exploitation that might occur with
the family member who--a child or a drug-dependent child or
whatever taking advantage of Mom or Dad. In the Department's
efforts in terms of educating all the network, the idea is that
you empower the case manager, so to speak, to the point of you
educating them very well in terms of determining whether or not
this individual is eligible to be able to do this, and because
of the training we were able to abort any of the issues with
respect to fraud or exploitation.
Mrs. Wilson. Thank you.
Going down my list here, I think, Mr. Green, you were up
for questions for 8 minutes, if you are ready to do so.
Mr. Green. Thank you, Madam Chairman.
Mr. Williams, I notice your wife's name is Helen, and my
wife's name is also Helen. And after 30 plus years of marriage,
I know that I rely on her to get by on a daily basis as much as
you rely on your wife. If I were to become disabled, and there
have been times, I guess, 4 years ago that she had to take of
me after surgery, the need for care similar to the ones that
you are discussing here today, and I know of no one else in the
world who I would want to care for me other than my wife or my
family, and I would like them, if necessary, to be compensated.
So I can appreciate how liberating and comforting this benefit
is to many disabled individuals who use it.
However, you point out in your testimony there are
limitations to the types of services that family members can
provide that expect people to know how to navigate, purchase
and manage your entire health and medical care, would be
setting many up to take a serious fall or even worse. Can you
elaborate on that statement? And what kind of difficulties
could individuals face if they are charged with managing all
your or my health care as they are with personal care services?
Mr. Williams. Well, I think the two are like apples and
oranges because no one ever knows, especially with a
disability, when an unexpected health cost and illness will
arise, and when they do, that is often the time I do not want
to have to think about does this fit my individualized budget.
Mr. Green. Thank you.
You do mention your individualized budget. In one way
States can give individuals with disabilities more choice and
control over their lives and the services they need, but many
States are using other methods to offer people the same choice
and control. Could you describe some of the ways outside of the
individualized budgets that States can give people more control
or choice?
Mr. Williams. The term ``consumer direction'' means that an
individual has a major say in the selection and direction of
their own attendants and related services. One way to achieve
this important end is through the use of individualized budgets
such as in Cash and Counseling. But some States are ensuring
the same choice and control by directing Medicaid community
living providers to let the people with disabilities decide who
they want to work for them. California, which was an early
leader in this area, for example, has operated a large
independent provider network for several decades. The way it
works is that people with disabilities find people they want to
use as attendants, and the State contracts directly with those
individuals as independent Medicaid providers. This is all done
without individualized budgets.
My office in ASPE funded a study of this program about 5
years ago that showed both people with disabilities and their
independent service providers really like this approach because
it gives all parties the choice of who they want to work with.
The two major downsides were that wages were very low, and
there were no health benefits, which are critical issues across
the country regardless of how these services are being
delivered and Congress needs to look and act on sooner rather
than later.
Mr. Green. Thank you.
And is there a way that Congress can encourage these
activities?
Mr. Williams. I think most critically it is to make certain
that the Federal commitment and funding for Medicaid is not
slashed either here or at the State level. I abbreviated my
prepared comments somewhat to cut--Friday probably works best.
What time is good for you?
Mr. Green. Madam Chairman, I would like to thank Mr.
Williams.
Mr. Williams. I think most critically it is to make certain
that the Federal commitment and funding for Medicaid is not
slashed either here or at the State level.
Mrs. Wilson. Thank you, Mr. Green. And thank you, Mr.
Williams. And I appreciate your patience with this committee,
and I very much appreciate you being here.
Mr. Whitfield for 8 minutes.
Mr. Whitfield. Thank you, Ms. Chairman.
Secretary White, Mr. Williams in his prepared remarks made
reference to the importance of national standards for
budgeting, and I was wondering if you might have any comment on
what he said about that.
Mr. White. We believe that with respect to the budgeting
issue, the individual counselor or the consultant that we work
with, they are charged with the responsibility of assessing
that individual client's needs. And with respect to that, they
establish certain protocol in terms of services that the
individual might be entitled to, establish a monthly budget per
se, and then they apply that to the program.
One of the issues that we--I will acknowledge is the fact
that we are concerned about some of the issues in terms of when
people transfer into this program, that there may be a
potential for it to be like Christmas, so to speak, in terms of
all of a sudden you have all of the services available to you.
That is where we believe we need to do a better job in terms of
training to the consultant to make sure we only purchase the
services that are available to enhance that individual's
ability to remain independent.
Mr. Whitfield. Now these consultants, would they be
consulting with more than one person or one family?
Mr. White. Consultants are like a case manager, and they
would have a caseload. Yes, they would be. The beauty of the
consultant's ability to coordinate with different families
would be that they could take the information they learned with
respect to one family and apply it to another. They might rely
on some community resources and be able to market better in
terms of that individual.
Mr. Whitfield. Ms. Gittens, did you have any say-so in who
the coordinator for your child would be?
Ms. Gittens. Yes, I did. Actually I was also a support
coordinator before my child was put on the program, and I had a
coworker who I told, if Jewel ever gets on Med-waiver, I want
you to be her support coordinator. So when Jewel was eligible,
I was able to ask her to request that Jewel be put on. So I did
have some say-so to it.
Mr. Whitfield. Did the State have to approve her being put
in that position?
Ms. Gittens. Jewel came in as a Med-waiver client already,
so she was involved in that particular agency. And then the
same person, that is the support coordinator, automatically
becomes the consultant once they have received the correct
training. At the beginning of the program, not all support
coordinators were trained to be consultants. Sometimes the
family did have to interview and select another one. But now I
would believe almost all of the support coordinators are
certified to become consultants.
Mr. Whitfield. How did they determine the actual monthly
budget for Jewel?
Ms. Gittens. I as a mother pretty much itemized everything
that Jewel needed. And her being on Med-waiver, I had a good
idea of the services from her past cost plan. I itemized
everything, and I sat down with the consultant, and she helped
me to figure out the amounts that Medicaid pays for those
services. And then we completed a purchasing plan and submitted
it for approval.
Mr. Whitfield. And then do you actually receive a check
or----
Ms. Gittens. For direct care? What happens is I submit the
time sheets to my representative. She mails it to what we call,
PASS, Personal Attendant Accounting Services, in Virginia and
when they receive the time sheets, they actually serve as the
bookkeepers for the project. So they compute the taxes, and
they cut a check made out to the direct care worker, and then
those checks are mailed to the representative's home, and the
representative gives it to the worker.
Mr. Whitfield. Have you been satisfied with the way it has
worked?
Ms. Gittens. Yes. First it was sort of bumpy, and sometimes
the checks didn't come on time. We were supposed to get a
monthly budget report, and at one point we were not getting
that on a regular basis. Now everything is going very smoothly,
and everyone seems to be pleased with the way that it works
because it gives a lot more accountability.
Mr. Whitfield. Now, if Jewel needs prescription drugs or
medicine, that cannot be purchased through this program; is
that correct?
Ms. Gittens. No, it cannot.
Mr. Whitfield. But if you and the counselor decide that
Jewel needs some particular equipment or service, then do you
actually negotiate that service, or does the coordinator
negotiate that service, or does a coordinator negotiate it?
Ms. Gittens. I initiate the process, and I would call the
coordinator or the consultant and tell her. For instance, I
will use an example. On Jewel's regular purchasing plan, we
never had respite because she will not eat for everyone, and I
never felt comfortable leaving her with someone for that amount
of time. Within the last couple of months, there has been a
lady working in her classroom who is excellent with her. She
does all her feeding as far as helping her to eat. So I called
the consultant and I said, I think I found someone that would
be a good respite worker. And my husband and I have not taken a
vacation pretty much for the last 13 years. My parents were the
ones that would keep Jewel, but as she got older, we just
decided we are not going to do it. I called the consultant and
I told her who I wanted the respite worker to be. I filled out
a change form. I added the service. I mailed it to the
consultant, and she forwarded it to the agency, I believe, in
Tallahassee. And then when we got approval from them, she let
me know that the funds were added to Jewel's budget.
Mr. Whitfield. Now if this program was stopped, and you had
to go back the way it was before, would that upset you, or how
would you feel about that?
Ms. Gittens. I would be very disappointed.
Mr. Whitfield. Would you?
Ms. Gittens. Yes.
Mr. Whitfield. Dr. Mahoney, I notice in your testimony or
someone's testimony they mention in New Jersey a personal
preference program. Is this the same thing as this cash?
Mr. Mahoney. The Cash and Counseling program goes by
different names in each State.
Mr. Whitfield. Ms. Gittens, what would you say is the--if
you were going to talk to decisionmakers on one of the real
problems with the current program that you are involved in,
what would you say is the biggest practical problem that you
face?
Ms. Gittens. I am concerned about the families that come
on. And being a former support coordinator, I know like in
anything else, you have good ones, and you have not so good
ones, and you have excellent ones. Jewel happens to have an
excellent one. But I am concerned that the family doesn't get
thrown out into the lion's den without any type of support. The
consultant is supposed to provide training until the family can
do this pretty much with their eyes closed, and then they are
supposed to back off. The consultant's rate of pay is the same
as the support coordinator's. And I would love to know that
every consultant is giving it all that they have and letting
the family know that even though I am not controlling this
anymore, I am there for you, and I am willing to give you all
the help you need.
Mr. Whitfield. Thank you.
Mrs. Wilson. Gentleman from California Mr. Waxman.
Mr. Waxman. Thank you very much. I want to thank all the
witnesses. This has been a very impressive hearing on an
experiment that seems to be working very well for many people.
It may not work for everyone, but it can work, and it ought to
be looked at as a model that could be replicated for the
purposes which it can serve.
But what I worry about, because we are facing a lot of
attempts to cut the Medicaid program, the block grant, to give
people vouchers, all sorts of ideas like that, but no one take
a program like this one, Cash and Counseling, and then decide,
well, that can be a model that can be easily expanded to cover
medical and health care. That smacks of being a voucher. Maybe
we can get for the record, Dr. Mahoney, what do you think about
this? Is this a model for medical health care generally?
Mr. Mahoney. You know, clearly Cash and Counseling, you
could say three things about its success. One, it really did
deal with, you know, basically your nonmedical services, the
types of personal assistant services families provide for each
other that wealthier people would buy for themselves. Second,
it deals--because these people--individuals have chronic needs,
it deals with a predictable, you know, type of a need. And the
third one, you know, you have heard from everyone here, this
isn't for everyone. It is very useful; that it is a choice. It
has been a wonderful choice for a significant minority of
people. People can return to the traditional system.
Mr. Waxman. The fact that that system is there is very
important, isn't it? By that system, I mean that people can
then look to the fact that Medicaid will stand behind them for
other needed medical services.
Mr. Mahoney. I think that is right. We have also started to
look in--with certain managed care organizations as far as
their, you know, interest in the future and consumer direction
and meeting the needs of people with disabilities as well. And
some of them--for instance, as you were saying, in New York
City this independent care system, very interested in that
approach.
Mr. Waxman. How does the Cash and Counseling model figure
out how much cash someone needs, and could the same method be
used for medical health care services generally?
Mr. Mahoney. I find the first part easier to answer than
the second. In all three of these States, people enter the
system as they do now. They get the same care plan. Then the
second step is a computation: What is the value of that care
plan, what is the dollar value of that care plan. Then the
consumer gets to choose. Hopefully they have information and
choose what is best for them. But it is the same dollar value
that that individual would have gotten.
Mr. Waxman. That is quantifiable.
Mr. Mahoney. Right.
Mr. Waxman. And I am trying to get a response here if
anybody tried to give any estimate for other services, they are
hard to estimate, and they are hard to price. Mr. Williams
certainly addressed this in his testimony, and I would like to
see if he wants to add something to this very point.
Mr. Williams. I think the only analog that applies here is
that a medical savings account--and there is a fairly fair bit
of research on why those don't work particularly well for the
kinds of humanity, people with disabilities and chronic health
conditions, that we are discussing here.
Mr. Waxman. Thank you very much, Madam Chair. May I ask one
question of Dr. Mahoney?
Some people suggested replacing the package of Medicaid
benefits with a package that is like CHP or traditional private
health insurance. How would a change like that affect low-
income people with disabilities?
Mr. Mahoney. I am not completely sure.
Mr. Waxman. Give it some thought, and maybe if you have a
response, you can put it into the record. And I would like the
others to respond to the record on that question as well
because this is an issue that has been bubbling around. And
some people suggested moving to CHP or a private health
insurance kind of package with people with disabilities. And I
would like to get a response of whether or not that is a good
idea for the record.
Mrs. Wilson. The chairman of the committee, or the
subcommittee, Mr. Bilirakis.
Mr. Bilirakis. Thank you very much, madam chairman. That
sounds pretty good to me, madam chairman.
I see that there are 2 out of 4 Members from Florida, and I
wasn't here to greet you and welcome you, and I apologize for
that, but as you can tell, I am really under the weather, and I
welcome you both here, Secretary White and Ms. Gittens. And Ms.
Gittens comes from my part of Florida.
You know, I guess this program is a perfect example, I
think, of the result of open-mindedness, creativity, having
something that is pretty good, that is working well, that is
doing the job it is intended to do, but at the same time always
being open-minded to new ideas to maybe improve it. And if this
were not available, Ms. Gittens would have the ordinary
Medicaid, if you will, and that sort of thing, but certainly
not the help she is now getting. So I think all of us should
not be close-minded here and be open to new ideas.
I guess I would ask maybe some more of a follow up to Mr.
Green's questions than anything else. I hate myself the way my
voice sounds. Secretary white, did you have any trouble getting
the waiver?
Mr. White. The waiver process is long and enduring.
Mr. Bilirakis. It always has been, even with the
President's brother being Governor of the State.
But, Dr. Mahoney, any response to that in terms of the
waiver process?
Mr. Mahoney. In many ways I agree. Certainly the Centers
for Medicaid and Medicare Services have within this last year
issued these model waivers for both 1915 and the 1115 research,
calling them Independence Plus, and they are hoping for a more
expedited process, but I hope it really will be.
Mr. Bilirakis. Well, that has been a bugaboo as far back as
I can remember, the problems of States getting waivers. Well,
the question again asked by Mr. Green was what--I think Mr.
Whitfield also got into it--what can we do, what can Congress
do--what should Congress do to facilitate the waivers? Three
States have received it--an additional I don't know what, an
additional 20 States are taking first steps toward it. I don't
know whether they have applied for waivers. Do you all know
what kind of problems they may be having? Are there
suggestions--you have an opportunity here not to only to tell
us about the program, but tell us what we can do legislatively
or what we should do legislatively coming from grass-roots
people like yourselves in order to help this program better
succeed, if you will, to expedite the process, and to tell us
maybe, going to Mr. Waxman's questions, whether something like
this should be looked at in terms of expansion aside from just
the disabled. Whoever wants to--Mr. White first, I guess.
Mr. White. Yes. Included in my testimony is the Governor's
commitment in terms of--we understand that there is a rising
population of folks in the State that need this particular
service; 47,000 people in the State of Florida are not able to
participate in it because it is not available. The second thing
of it is that we know that Medicaid costs are increasing
rapidly, I believe it is 6 percent increase in enrollment each
year, with a 13 percent increase in the overall costs.
It seems we have an opportunity here today to be able to
not completely make the costs go away, but maybe to control
them more acceptably in terms of forming some programs that
allow innovations that would have otherwise forced people
prematurely into a nursing home, $42,000, versus a program that
can do it for much less, and the client is much happier because
they are with their familiar members. We are restoring their
dignity. Seems to me that that is pretty commonsensical.
Mr. Bilirakis. You say there are 46-, 47,000 on a waiting
list and not able to become a part of this program, right?
Mr. White. That is correct.
Mr. Bilirakis. Why is that?
Mr. White. In our model of consumer-directed care, we have
a pilot in the State of Florida, and it is not available in all
parts of the State at this point. However, the Florida
Legislature last year did pass legislation that would allow us
to go statewide. We have in the past year just received from
CMS a preliminary approval of this to go statewide, and we are
anxious to get that going.
Mr. Bilirakis. I thank you.
Dr. Mahoney, you are chomping at the bit.
Mr. Mahoney. If I could expand, the requests that New
Jersey and Arkansas have made to CMS of clarifying the
definition of Medicaid's optional personal care benefit so it
didn't have to be limited just to human assistance is one way
without waivers, which is the beauty that New Jersey is seeing
that an option like this could be expanded. So I would speak
highly of that. And, you know, it goes to the point made
earlier. With these individualized budgets, it isn't just a
matter of people being able to know who they can hire. It is
the freedom to tailor assistive devices, home renovations, a
chair that they can actually get up from so that they don't
need someone to help them. That type of thing makes a
difference.
The other one is as the Robert Wood Johnson Foundation, at
their July board meeting, looks at whether to provide
additional seed money and technical assistance to States to
expand, I know it will make a difference that there be a
partnership with Health and Human Services in the funding and
operating and coordinating of that effort.
Mr. Bilirakis. Madam Chairman, just to take advantage. The
Chair will ask you to respond to written questions that will be
furnished to you. I would also add to that request that you
furnish to us your ideas on what can be done to improve this
type of a program and what we might be able to do legislatively
and that sort of thing. Thank you for your indulgence.
Mrs. Wilson. The gentleman from Michigan Mr. Stupak for 8
minutes.
Mr. Stupak. Mr. Williams, I would like to ask you a
question. Mr. Waxman was asking some questions, and I would
like to follow up on it a little bit further.
You have suggested that Cash and Counseling and the money
follows the person's initiative, if properly implemented, can
enable many people with disabilities to live in their own homes
and communities, but all this is happening in a much larger,
more disturbing context where we are seeing deep budget cuts at
the State and also at the Federal level. As you know, the
administration and some Governors have suggested or proposed
that Medicaid be turned into a capped program. In response, a
number of members of this committee have cosponsored the
Strengthening our States Act, or H.R. 2000, which makes
personal care and attendant services a new State optional
service under Medicaid and would provide enhanced Federal
funding for States that provide this service. The bill also
provides enhanced Federal funding for all home and community-
based care waivers.
I know also that many individuals with disabilities are
also interested in the MCASA bill introduced by Congressman
Danny Davis, which a number of us Democrats on this committee
have also cosponsored.
I would like to hear what are your greatest fears with the
current financial crisis at both the Federal and State level on
some of these proposals. What do you believe the Federal
Government's role should be in this regard?
Mr. Williams. Right now as we speak, about 300 people with
disabilities from independent living centers across the country
are marching and wheeling up Capitol Hill to protest the
Medicaid cuts and call for the passage of MCASA. Now, that is
not a large group by Washington standards, and given the times,
it is easy to write it off as tilting at windmills. But it is
important to understand why so many of us believe that MCASA is
the only just and equitable solution to the problem and that
you and others in Congress recognize the threats those with
disabilities on Medicaid face everyday.
Though the 19 States made use of Medicaid waivers to expand
home and community-based services, even by 2000, when most
States have budget surpluses rather than deficits, only three
States spent 50 percent or more of their Medicaid long-term
care funds on community living services. In contrast, 29 States
spent less than a third of such funds in this manner. This
results in huge inequalities across and even within States as
to what people with different disabilities but a common need
for a community living service received.
What does this mean? Take two people with the same degree
of need for daily help with things like eating, dressing and
using the bathroom. Odds are that if one of the two is lucky
enough to get even a limited amount of the help they need to
live in the community, the other will have to go without it or
enter a nursing home. Even in the 1990's, when many States were
actually expanding community living services, many remained
institutionalized. Many others lived in the community, but
suffered the indignity and real harm that comes from having
many of their needs go unmet. These problems are growing worse
as States cut community services in an effort to deal with
their massive deficits. The Bush block grant combined with the
tax relief plan would further exacerbate what some have come to
see what it is, a national disgrace which must be remedied on a
consistent nationwide basis, not idiosyncratically by 51
different States.
A lot of people are calling for even greater flexibility
for States as if that will solve these problems. Experience
shows the opposite to be true. Flexibility leads to enormous
inequities in respect to what Americans with disabilities
receive in terms of community living services depending on what
State they happen to live in.
I agree on one point with the Nation's Governors. The
Federal Government should be playing more of the predominant
role in financing Medicaid, especially community living
services. But unlike the Governors, I believe and think that
most Americans would likewise expect that in return for this,
that the Federal Government should make certain that, as we
guarantee, all those with disabilities who can live in their
community with affordable supports have the equal opportunity
to do so regardless of their age, disability or type of
assistance they need. This is what MCASA is meant to achieve.
And I believe H.R. 2000 contains many important powers and
incentives particularly in providing Federal matching rate for
community living services that would move our country in this
crucial direction.
Mr. Stupak. Thank you.
Anyone else care to comment on that, the capping or the
block granting of the Medicaid?
Ms. Gittens, could I ask you a question? In your testimony
earlier, you had indicated that one of your concerns was
families coming on or who may be consultants under this
program. It seems having well-trained counselors are critical
to the success of these programs and success for the families.
Could you comment on that? What are the pitfalls for consumers
of having counselors who are not motivated or having committed
to working hard for their clients? You sort of alluded to it,
but is there something more you could explain?
Ms. Gittens. I think that if the consumers are just coming
on, they are experts on what they need. But as far as how to
get it done, I think there is a lot that has to be learned in
the area of paperwork and format. And so I think that is where
the consultant comes in, to help them understand how to get
what they need. And sometimes I am concerned that they don't
know what to ask and don't know the right questions to ask. The
control is given to them, but I think that the support needs to
be there.
One of the things I mentioned is that a support group was
something that was--during the enrollment process was promised
to everyone who enrolled. So I would love to see that come in
my area where we don't have a support group. If we had a
support group of consumers and families, then I believe they
could train each other and then still have that control, but
right now we don't have that.
Mr. Stupak. Dr. Mahoney, did you want to say something?
Mr. Mahoney. In each of our States they use very different
approaches. Some try to retrain existing care managers. Some
try to use new groups. I think we have learned the importance
of training, and we are actually negotiating with CMS--I don't
know how to say--a best practice approach for training
counselors. And I love her idea of the peer support network.
Mrs. Wilson. Mr. Stearns for 5 minutes.
Mr. Stearns. As you know, I am not a member of this
committee, but a member of the full committee, and I wanted to
ask a question since I had a great deal of interest in
consumer-driven health care. And, of course, I want to welcome
my fellow Floridians, Secretary White with Tom Reimers and
Patricia Gittens, and thank all of you for coming.
Let me just read the question I have for you, Secretary
White. You say that States that implement consumer-directed
programs should consider choice and quality issues, and I
thought I would work off that. The multiple options for
consumer supports are preferred. There are issues involving
economies of scale and quality that need to be considered in a
consumer-directed program design. If there are an unlimited
number of consultants, and each consultant has only a limited
number of consumers to assist, some consultants may not be able
to acquire the experience and develop the skills necessary to
truly empower consumers. So basically, an overabundance of
consultants could also lead to challenges in--basically in the
areas of training and technical assistance. While multiple
options for fiscal intermediaries may benefit the consumers,
too many options may create a financial hardship for each
company, and I think ultimately harming the consumers.
So the question is, what is the balance, the balance in the
latitude in hiring inherent in the CDC with the basic need for
a level of training and technical assistance?
Mr. White. In response to that, I believe that achieving
that balance is going to be one of those things where we have
to experiment a little bit. I think one of the concerns we had
in being a fiscal intermediary, if you had too many lives, so
to speak, in terms of the program, and you had too many
intermediaries who had a very small portion of those lives, it
is an economy of scale, so it is not effective to be a fiscal
intermediary, and, therefore, you may not be doing your job as
well, or you may be slacking on the number of staff persons in
order to handle these bills. Ms. Gittens talked about the fact
that she has numerous bills that she turns in on a monthly
basis to that fiscal intermediary, and they in turn generate
the check that goes to those individuals.
The other concern is that we--going back to Ms. Gittens'
testimony in terms of training those consultants to be the best
that they can be, that we really train that core of folks so
they can go out there and counsel effectively in terms of
helping family members select the choices that are better for
them.
Mr. Stearns. Anyone else wish to speak?
Mr. Mahoney. Just briefly. We have just about finished
compiling about a 40-page paper of implementation lessons from
the three States, and we are hoping that will be helpful to
other States.
The other thing is within the next month, a guide for--of
best practices for quality management in a consumer-directed
system is one of the things, you know, that we have come up
with. It is important to us--you know, this isn't just limited
to people who have family and friends.
Mr. Stearns. My time is going to expire--Mr. Williams, I
will come back to you. And let me put this on the plate of
Secretary White--Dr. Mahoney. Is it possible what we are
talking about here for Medicaid could be an application for
Medicare, just to narrow the inquiry, maybe not as an entire
umbrella for health care, but something that we could do for
chronic, predictable conditions like asthma in children or
diabetes? It may seem a condition like this, to have a high
degree of self-care and self-management would be good and so
that we could have a consumer-directed in that area.
Mr. Mahoney. I have been part of a day-long panel with
people in Medicare of how this might be applied maybe in areas
like medical equipment, DME, et cetera. For me, the three
principles we have been working with--you know, the issue of
nonacute care, nonpredictable and choice are sort of the
principles that govern our thinking at this point.
Mr. Stearns. That would be chronic, predictable conditions
in which you think it could apply.
Mr. Mahoney. Right. And not with acute care types.
Mr. Stearns. Mr. Williams.
Mr. Williams. May I interject? One concern I have about
Florida's consultant approach, which is that they are State
employees, and whether or not conflicts of interest already
exist--and I am not saying there are. The potential conflicts
are there.
Mr. Stearns. Anyone else like to speak? I think my time has
expired.
Mr. White. The consultants that we are speaking of are case
managers that are in the field, they are not State employees,
just to clarify that issue.
Mrs. Wilson. Thank you. My intention here, because there is
a vote on the floor in about 12-1/2 minutes, is I think the
only person who has not had a chance to ask questions is Mr.
Brown, and unless there are other questions or second round of
questions, I hope to adjourn the hearing before we go to these
votes, if that is acceptable to people.
Mr. Brown.
Mr. Brown. I have a question for Ms. Gittens and one for
Mr. Williams.
Ms. Gittens, it is pretty clear you are knowledgeable and
understand how to negotiate the pitfalls and the obstacle
course of this program. Could you discuss the--but many don't
obviously have the skills and knowledge and ability you do to
be able to figure all this out. Could you discuss the
importance of having well-trained and committed counselors to
help families navigate the program and get the benefits they
need?
Ms. Gittens. I think it would be very important for them to
know who they can talk to and knowing their full range of
opportunities. And the reason I say that is because sometimes,
in my personal experience, a consultant may, out of--maybe out
of ignorance or negligence, or maybe just being very busy, they
may not give them the entire scope of the opportunities. And
unless--like me, being on the inside, I was able to know some
things.
I think the best way to do this would be through a support
group, you know, having someone who volunteers, or to lead a
group that whereas they have more experience and they are able
to help the others, maybe they can be trained if they have no
prior knowledge, maybe they can be trained by someone, and then
they handle their group.
Mr. Brown. Mr. Williams, under the Cash and Counseling
demonstration, individuals, as you know, are given personal
budgets to manage for their personal care services, as you
outlined in your testimony and others have addressed. A couple
of questions. Do you believe that the methods for calculating
the individual budgets have been fair? What about individual
budgets under the Independence Plus demonstration? Are there
appropriate safeguards there to ensure that those budgets are
adequate and that those budgets are fair? Would you answer that
question, please?
Mr. Williams. I was lucky in asking when the waivers were
approved, and what took the most time was grappling with this
question of how to set an individualized budget. I think we got
the elements right as far as we could back then. I would,
however, like to look over the evaluations results more and
submit a written response on whether what we thought was fair
turned out to be adequate and something people with
disabilities as well as States could understand and use
effectively.
Mrs. Wilson. We would welcome explanation and expansion
after you look at the results of the study.
I wanted to thank you all for being here today. Thank you
for your research work. It has been very helpful to have those
independent evaluations.
Thank you, Mr. Secretary, for the States' perspective, and
thank you particularly to Ms. Gittens for being here and
traveling here. I am glad you were to find family care or
respite care to be here today. And, Mr. Williams, thank you for
giving your unique perspective to this committee.
We are going to hold the record open for any members who
would ask written questions over the coming days, and very much
appreciate it.
This hearing is adjourned.
[Whereupon, at 12 p.m., the was adjourned.]
[Additional material submitted for the record follows:]
Responses for the Record from Mr. Bob Williams to Questions of Hon.
Edward J. Markey
Question 1. Thank you for your testimony at the Energy and Commerce
Committee's Health Subcommittee. You provided the Subcommittee with
important insights into the strengths and key areas for improvement
within the Cash and Counseling demonstration project.
Given your expertise and substantial first-hand experience in
Medicare and Medicaid policy, I'm interested to hear your views on
another important program that has received considerable attention both
in the Congress and the Administration: Medicare home health services
for homebound beneficiaries.
As you know, patients with disabilities who are able to leave the
home only with extreme difficulty and assistance from others may be
deemed homebound by the Medicare program and therefore eligible for
health services provided in their homes paid for by Medicare. To retain
these services, the patient is required to remain in his or her home
except for short, infrequent trips outside or to attend a doctor's
appointment, religious service or adult day care. The purpose of these
restrictions on departures from the home is to ensure that patients
don't ``game'' the home health program--meaning that patients who are,
in fact, physically well enough to leave the home don't take advantage
of a program meant to help those who are legitimately homebound.
Unfortunately, these restrictions have produced an unintended
consequence--they imprison severely and chronically disabled patients,
such as those with Lou Gehrig's Disease and late-stage Alzheimer's, in
their homes. That's because patients who are legitimately homebound and
unable to ever regain the ability to leave their home without
substantial difficulty and technological assistance are bound by these
same restrictions on their movement.
This means that patients such as David Jayne, a courageous man from
Georgia who continues to battle Lou Gehrig's Disease, cannot leave his
house to attend his son's hockey game without fear of having his home
health benefits terminated for violating the homebound rules. In fact,
when David attended a University of Georgia football game a few years
ago, his home health agency terminated his benefits when it found out
about the trip. According to the home health rules, David's trip to the
game indicated he must not really be ``homebound,'' even though ALS has
deprived him of the ability to move his arms or legs or breathe on his
own.
As you know, last summer the Bush Administration issued additional
instructions in the Medicare home health agency manual intended to
clarify homebound criteria and prevent profoundly and chronically
disabled patients like David Jayne from being caught up in restrictions
on their movement. Specifically, the Administration announced that:
``occasional trips to the barber, walk around the block, attendance at
a funeral . . . or other infrequent or unique event'' would not
automatically trigger forfeiture of home health benefits. The Bush
Administration also announced that a patient's overall physical
condition should be considered when determining homebound status.
A) In your view, have these additional instructions resolved the
problem in the Medicare home health program, which has had the effect
of imprisoning severely and irreversibly disabled beneficiaries in
their homes?
Response: Last July twenty-sixth at event commemorating the 12th
anniversary of the ADA President Bush announced that his Administration
issued guidance that day to ``clarifying Medicare policy, so people who
are considered homebound can occasionally take part in their
communities, without fear of losing their benefits.'' The President
stressed that the intent behind it is to ensure that ``when Americans
with disabilities participate in their communities, they should not be
penalized.'' Unfortunately, the program instruction issued that day to
home health agencies and Medicare carriers is even more restrictive
than the already overly restrictive homebound definition in the
statute.
In order to receive Medicare home health services, a beneficiary
must have a post acute or chronic skilled care need and must be
``homebound''. To be considered ``homebound'': 1. The individual must
have ``a normal inability to leave home''; 2. ``Leaving home requires a
considerable and taxing effort by the individual,'' e.g., by relying on
a wheelchair or cane or the assistance of another person; and, 3. Trips
outside the home must be of an ``infrequent or of relatively short
duration''. The exception to this is that the law permits an individual
to be absent from their home to receive health care or to attend adult
day care or religious services at anytime The law likewise states that:
``Any other absence of an individual from the home shall not so
disqualify an individual if the absence is of infrequent or of
relatively short duration.'' [42 U.S.C. '1395n(a)(2)(F)]. In recent
years, however, individuals with severe and permanent disabilities like
ALS, muscular dystrophy, severe brain injury and quadriplegia are
increasingly being thrown off the benefit for leaving home regardless
of how short or infrequently they do so.
In attempting to address this problem, CMS' new guidance cites
examples of when ``chronically disabled individuals who otherwise
qualify as homebound should not lose home health services because they
leave their homes infrequently for short periods of time for special
occasions, such as family reunions, graduations or funerals.'' CMS
points out that its list of excused absences is meant to be
illustrative rather than all-inclusive. Listing examples like these,
though, creates more problems than it solves. The Medicare program
should not be in the business of creating what will always be a finite
list of ``permissible reasons'' any beneficiary can choose to leave
their home that ultimately likely will be used to unjustly deny them
their services and/or their personal freedom.
B) If the Administration's instructions have not resolved the
problem, why not?
Response: Even under current law, a beneficiary theoretically
should be able to leave home to work, attend college, shop, go to the
theater, and dine at a restaurant and a myriad of other reasons if such
``absences'' are of ``infrequent or relatively short duration''. But,
there is the rub. No one knows what the phrase ``absences of infrequent
or relatively short duration'' means and any attempt to define it would
be as arbitrary and capricious as developing a list of government
approved reasons why law abiding Americans should be ``allowed'' to
leave home and still retain the skilled home health services they need
to literally stay alive. The program instruction issued last July puts
CMS, Medicare carriers and home health agencies over the simple
liberties of living in the everyday lives of people with significant
disabilities and chronic health conditions like David Jayne than any of
these entities have any real reason to exercise--all without adding
anything to the integrity of the Medicare program.
Question 2. As you may know, I have introduced H.R. 1874, a bi-
partisan bill co-sponsored by Congressman Chris Smith and members of
the full committee from both sides of the aisle. The purpose of this
legislation is to create a three-year pilot project that would lift the
restrictions on departures from the home only for those home health
beneficiaries who are the most severely and permanently disabled--such
as those with ALS and similar profound and debilitating conditions.
A) Given your expertise in demonstration projects, do you believe
that such a demonstration project is an effective way to test whether
providing this exemption for a tightly defined population would
increase costs or have any adverse effects on the quality of care?
Response: I believe that it will prove to be an effective way to
test whether implementing the stringent requirements set out in H.R.
1874--for certifying that certain individuals will always need skilled
home health services and lifting the duration requirements of the
homebound requirement for those persons--would increase costs and/or
have adverse impacts on quality of care. The proposed demonstration
would have an enrollment cap, which theoretically could deter some from
applying to participate in it in the first place. This would be a
problem if prospective participants had little to gain from signing up
and going through the process of being screened to determine whether
they meet the criteria. But, that's clearly not the case here. The
stark choice here for beneficiaries with the most significant
disabilities and health conditions is whether to continue to be
imprisoned within the 4 walls of their homes forever or to apply to
participate in the project and enjoy the common freedoms of movement
that all other Americans rightly take for granted.
For this reason, I am convinced that--if it is designed and
implemented correctly--far more will apply to take part in this
demonstration than the enrollment cap will permit. This is lead to
tragic consequences for some individuals. But, in terms of the
demonstration itself, I believe this will produce three fairly sizable
groups of beneficiaries whose needs and characteristics can be assessed
as part of the evaluation:
Those who are found to meet the criteria and participate in
the demonstration
Those rejected from the demonstration because they fail to
meet the criteria
Those who apply to participate but are turned away because of
the enrollment cap--regardless of need they met the criteria or
not
It will be crucial in my judgement for Congress and the agency to
examine the patterns that emerge both within and among these three
groups in order to be able to determine:
Whether the criteria can be administered the majority of the
time in an fair, accurate and predictable manner
Whether relaxing the current homebound restriction in this
manner would increase cost or lower the quality of care
Whether the number of types of Medicare home health users who
apply and are found to meet the criteria will put increased
administrative burdens on the program
A demonstration like the one envisioned in H.R. 1874 would yield
informed responses to these policy questions and lead to better
Medicare policy.
B) As a former deputy assistant secretary at HHS, do you believe,
in your professional opinion, that the Department should support
permanently lifting these restrictions for permanently and severely
disabled beneficiaries?
Response: Yes, I do.
Question 3. It's my understanding that the Medicaid home health
program for homebound beneficiaries does not limit departures from the
home, although the Medicare program does.
A) Do you think that it makes good public policy sense for the
Medicare program to restrict departures, but the Medicaid program to
permit them?
Response: The vast majority of Medicare beneficiaries who use
skilled home health services do so only for a short period of time when
recovering from an acute illness or injury, the nature of which will
not permit them to leave home until they recover. In these instances,
the current Medicare homebound restriction can be applied in a
consistent, fair and objective manner--i.e., when someone's illness or
injury resolves itself to at least the point where skilled care is no
longer required and they can leave home independently they are no
longer homebound. In these situations I believe the current rule
continues to serve a valid policy purpose. Where it becomes punitive
and absurd is when its duration requirements (i.e., that an individual
can only leave the home for periods of ``an infrequent or of relatively
short duration'') is when it is applied to those whose significant
disabilities and/or chronic health conditions are permanent and severe
enough to task that they receive skilled home health services for the
rest of their lives. In these instances, the homebound rule can only be
seen as an arbitrary to put someone who has broken no laws under house
arrest for the rest of their lives.
In 2000, CMS told States they could no longer impose a homebound
requirement on people with significant disabilities and chronic
conditions needing Medicaid home health services because: 1. Unlike in
Medicare, there is no statutory provision in the Medicaid law that
expressly requires or permits States to do so; and 2. More importantly,
doing so infringes on the civil rights and everyday liberties to live
their lives in the community like all others. Efforts to do the same in
Medicare are vital.
Question 4. As you know, the Bush Administration's New Freedom
Initiative is intended to enable persons with disabilities ``the
necessary supports to fully participate in community life.''
A) In your view, does the homebound restriction--even with the
Administration's modification last summer--appear to contradict the
principles it established in the New Freedom Initiative?
Response: Yes.
B) Do you believe that elimination of the restriction--only for
those beneficiaries who have severe and life-lasting conditions such as
ALS--would be consistent with the intent of the New Freedom Initiative?
Thank you for your testimony and for providing responses to these
questions.
Response: Yes.
______
Responses for the Record from Mr. Bob Williams to Questions of Hon.
John D. Dingell
Question 1a. Under the Cash and Counseling demonstration,
individuals were given personal budgets to manage for their personal
care services. Do you believe that the methods for calculating the
individual budgets have been fair?
Response: To respond to this question I have reviewed the final
evaluations prepared by Mathematica on the implementation of the Cash
and Counseling projects in Arkansas and New Jersey, which contained
information on how both States determined the individual budget of each
person who received cash in lieu of Medicaid personal care services.
The final evaluation on the Florida project has not been released and
information on how the State goes about determines the amount of
person's individual budgets was not available for my review. Thus, my
response is based on the reported experiences in Arkansas and New
Jersey. Online versions of the final evaluations prepared by
Mathematica of the projects in both states are available at http://
www.mathematica-mpr.com/3rdLevel/cashcounselinghot.htm.
Both States took two quite different approaches to determining the
individual budget amount each participant received: New Jersey
determined it on the basis of a person's current need for personal care
services as described in their ``plan of care'' (hereafter referred to
as services plan), while Arkansas used a ``discounting method'' that is
described further below.
New Jersey took the much more straightforward and potentially
fairer approach by basing the individual budget on what the person's
existing service plan said he or she required. According to the
Mathematica evaluation:
New Jersey based the amount of the cash allowance on the
current PCA care plan. Hours planned were cashed out at the
hourly rates the state paid for weekday and weekend PCA
services (in New Jersey, care plans differentiate between
weekday and weekend hours). At about the time of our visit, the
amount of the allowance ranged from about $300 to about $2,800
a month. The average was about $1,300. (Mathematica's Final
Report on New Jersey's Personal Preference Demonstration, page
xiii.)
There are pro's and con's taking this basic approach. On the
positive side, especially as a jumping off place, it seems a logical
and ``fair'' way to set at least an initial individual budget amount
for the person. But, it is only as fair to the extent that the plan
accurately and objectively reflects the person's complete personal care
needs.
This points up the negative side to this approach, which is that
service plans can be based less on the actual needs of an individual
and more on what State professionals and providers understand to be the
``resources available'' to meet those needs. Thus, an individual budget
derived from the person's current service plan can only be as fair and
accurate as the plan itself.
It is not possible--based on the results reported by Mathematica--
to tell whether the service plans used in New Jersey were accurate in
documenting the actual needs of those 875 persons that received the
individual budget payments. (Note: The 875 number is half of the about
1,750 people participated in the Personal Preference Demonstration in
New Jersey in evenly divided treatment and control groups between
December 1999 and June 2002. See Mathematica's Final Report on New
Jersey's Personal Preference Demonstration, page xiii.)
But, even if the New Jersey plans proved to be in the main an
accurate basis from which to derive an individual budget amount, the
point remain a critical one that Congress must recognize and address:
Service plans developed in other States that desire to use individual
budget to expand community living options may be flawed in the ways
just described. Steps that the federal government should take to remedy
this are listed in the Recommendations section below.
Arkansas used a practice known as ``discounting'' in determining
the individual budget amount each participant received. In its final
report on the Cash and Counseling project in that State, Mathematica
explains the process used by Arkansas as follows:
Arkansas based the amount of the cash benefit on the care
plan. The amount was based on the current care plan for
treatment group members who were already PAS recipients, and
the outreach/enrollment nurses developed care plans for those
new to PAS. Both types of care plans were cashed out at $8.00
an hour after ``discounting.'' Discounting involves multiplying
the care plan hours by the ratio of the cost of services
actually received to the cost of services listed on the plan of
care. It is intended to ensure the budget neutrality of the
cash program by taking into account the fact that the amount of
services received is generally less than the amount planned
(due, for example, to hospital admission of PAS recipients and
insufficient supply of aides). Arkansas developed provider-
specific discount rates for current recipients of PAS by
comparing care plans and claims for the previous year for
random samples of those served by various providers of
traditional personal assistance. These provider-specific
discount rates ranged from about .70 to .91. A rate of .91 was
applied to the care plans of new recipients of personal
assistance. (See Mathematica's Final Report on Arkansas'
Independent Choices Demonstration, page xii.)
Mathematica indicates that Arkansas relied heavily on using
discounting to determine individual budget amounts for the following
combination of reasons:
A major issue that arises in any program using care plans to
set cash benefit levels concerns differences between the amount
of service planned and the amount actually received. The amount
of service received is generally less than the amount planned.
The amount of service received is generally less than the
amount planned. (The care plan typically represents the maximum
amount of care authorized; thus, the amount of care received
does not exceed the amount planned.) Because the cost of the
care received is generally less than the cost of the care
planned, a discount rate must be applied to ensure that the
costs of the cash program do not exceed the costs of the
traditional program if the level of the cash benefit is to be
based on care plans.
Care received is generally less than care planned for a
variety of reasons. A client may be unexpectedly hospitalized
and thus not available when an aide arrives. A home care aide
may not appear for work when expected, or an agency may be
unable to find enough workers to provide the care it had
planned. Agencies sometimes plan for somewhat more care than
they expect to render so that they can increase the amount of
care without revising the care plan if the client's needs
increase. That is, the total hours planned included a ``hedge''
against possible future increases in need. (Mathematica's Final
Report on the Arkansas pages 30-31.)
The Final Report finds that Arkansas' use of the discounting
methodology proved problematic in several ways, including the
following:
Determining the discount rate needed to achieve budget neutrality
can be difficult. The ratio of the cost of care received to care
planned may differ for agencies and individual clients. (Note:
Achieving budget neutrality was not a requirement this demonstration
but Arkansas chose to use this method anyway.)
As a result, using a single discount rate for all agencies and
all clients may unfairly penalize some cash program
participants.
As the labor market tightened in the late 1990s, it may have
been harder for traditional agencies and project participants
to find enough workers.
Discount rates developed for random samples of all personal
care recipients may be inappropriate if those who choose to
participate in the demonstration differ systematically from
other personal care recipients.
(Mathematica's Final Report on the Arkansas project, page xvi.)
Through this process, the discounted care plan hours were cashed
out at $8.00 per hour. The difference between $8.00 and the hourly rate
the state paid to traditional providers ($12.36) was used to cover the
cost of counseling/fiscal services. (Page 32). This reduced the
individual budget funds each person could use to actual another person
to provide them needed assistance by slightly over a third.
It should be noted that ``the discount rate for care plans
following reassessment of cash recipients (.91) was more generous, on
average, than their initial discount rates (which ranged from .70 to
.91)'' Mathematica's Final Report on the Arkansas project, page xvii).
But, this appears to have had little to no positive effect on the
purchasing power of those receiving the cash payments. The report says
that those who had personal care needs that had gone partially or
completely unmet by the ``traditional program had a greater incentive
to participate in IndependentChoices.'' (Page xvi). Yet, it also
concludes that:
The average cash payment in Arkansas would not cover even
half-time work (assuming an hourly wage of $7.00 an hour). Only
late in the demonstration did mechanisms begin to develop to
help workers hired with the cash benefit find positions working
for other cash recipients. Still other consumers found the cash
program less attractive due to restrictions placed on the uses
of the cash, according to staff of IndependentChoices. Some
consumers were disappointed that the full amount at which the
discounted care plan was cashed out ($8.00 per care plan hour)
could not be paid as wages. After providing for payroll taxes,
the maximum wage possible was about $7.25 an hour (unless the
number of hours was reduced). (Mathematica's Final Report on
the Arkansas project, page 66. Use of bolding not in the
original.)
Clearly, if a goal of the project was to enable people with
disabilities with significant unmet needs to purchase more services and
supports, its use of discounting was ill advised. Moreover, in my view,
the discounting penalizing people with disabilities for services that
have not been provided for reasons that are outside their control
(e.g., hospitalizations, workers not showing up, changes in the economy
as a whole). This likely was not Arkansas' intent but the results speak
for themselves and should not be repeated elsewhere. I strongly
believe, therefore, that Arkansas' use of the discounting method
produced unfair results and conditions and therefore, it should not be
allowed to be used by any other State for this purpose.
Additional concerns and comments: My review of these evaluations
prompts me to share the following concerns and comments with the
Committee as well.
States should assure that whether an individual opts to receive
personal care in the typical manner or through the use of an individual
budget that both methods will enable him or her to receive equally
effective services and supports--Only 10 to 15 percent of those
eligible for personal care option services in Arkansas and New Jersey,
respectively, signed up obtain an individual budget. Because of the
design of the demonstration itself, only half of these received cash
payments (3295 in all 3 States--see Cash & Counseling At A Glance, June
30, 2002 at http://www.hhp.umd.edu/AGING/CCDemo/ataglance.html. There
are many reasons why participation rates in these projects were modest.
Moreover, interest in using individual budget can be expected to
increase as people gain more knowledge of the method. But, well into
the foreseeable future most people with disabilities on Medicaid who
need personal assistance will receive it through the existing system.
The findings of the evaluations of the projects in Arkansas and New
Jersey also confirms what I told the Committee when I testified: An
individual budget works best for someone with an extensive network of
family, friends and previous workers from who they can purchase
services and supports with their cash supplement. One of the major
successes of both projects enjoyed was that participants were able to
``tap a new source of personal assistance workers--family members and
friends''. (Mathematica's Final Report on the New Jersey project, page
xviii).
But, Mathematica found the converse to be true in both States as
well: Those without family and friends had a tougher time getting their
needs met through using the monthly cash payments. There were a variety
of reasons for this--the payment was not sufficient, the labor supply
was tight, there were few supports in place to help with the
recruitment and screening of potential workers. For example, in terms
of the New Jersey project, Mathematica found that:
Recruiting is critical for those consumers who do not have
family or friends available to hire as workers. Personal
Preference program staff reported that the receipt of the cash
allowance was delayed for consumers who had difficulty
recruiting a worker and that those who could not recruit a
worker tended to drop out of the program. (Mathematica's Final
Report on the New Jersey project, page xvix and see pages 123
and 153 for similar findings). (Emphasis is in the original).
Similarly, as previously pointed out those in Arkansas who had to
hire and retain workers other than family or friends found it difficult
to do so because of the paucity of the hourly wage they could pay to
such individuals and the tight labor supply. There is also a separate
body of research that shows people with disabilities without a network
of family and friends generally have a harder time getting their
personal care option needs met, have greater unmet needs and are at
higher risk of institutionalization as a result. Improvements could no
doubt be made to help mitigate many of these problems. But, it cannot
be assumed that even with modifications individual budget would work
well for all people on Medicaid with personal care needs, particularly
those who have extensive needs and/or a sparse substance abuse network
of family and friends. Hence, it is imperative that States that choose
to offer individual budgets also must be expected to provide equally
effective access to personal care services through both this method and
the existing Medicaid program. This is also why States that opt to use
this approach likewise must be required to meet a strong and
enforceable ``Maintenance of Effort'' requirement in respect to funding
personal care services through more typical means as well. To fail or
refuse to do this would, in my view, be irresponsible.
States should offer individuals the opportunity and support to
direct their personal care services through other means than through an
individual budget--The disability community (i.e., people with
disabilities ourselves) have long recognized and emphasized that there
are and need to be many ways for individuals with disabilities to
direct their own personal assistance services. See pages 5 and 6 of the
final report on the implementation of the Arkansas demonstration for a
concise discussion of the historian of the concept and philosophy of
consumer direction. The Medicaid Community-Based Attendant Services and
Supports Act of 2003 (S-971/HR2032) includes the following definitions
related to consumer directed services:
`(B) CONSUMER CONTROLLED--The term `consumer controlled' means a
method of providing services and supports that allow the
individual, or where appropriate, the individual's
representative, maximum control of the community-based
attendant services and supports, regardless of who acts as the
employer of record.
`(C) DELIVERY MODELS--
`(i) AGENCY-PROVIDER MODEL--The term `agency-provider model' means,
with respect to the provision of community-based attendant
services and supports for an individual, a method of
providing consumer controlled services and supports under
which entities contract for the provision of such services
and supports.
`(ii) OTHER MODELS--The term `other models' means methods, other
than an agency-provider model, for the provision of
consumer controlled services and supports. Such models may
include the provision of vouchers, direct cash payments, or
use of a fiscal agent to assist in obtaining services.
These definitions were developed with significant input from people
with disabilities who use personal assistance extensively. The
definitions make clear that people with disabilities can and must be
able to exert choice and control over their services and supports in a
variety of ways--not just via an individual budget. In spite of this,
however, CMS has recently taken the position that it views consumer
direction in a far more narrow and limiting way by stating that:
The Centers for Medicare and Medicaid Services (CMS) defines
a self-directed program as a state program that presents
participants with the option to control and direct Medicaid
funds identified in an Individual Budget. (Home and Community
Based Services: From Institutional Care to Self-Directed
Supports &Services, page 11 online at http://cms.hhs.gov/
newfreedom/528hill.pdf)
It is presumptive for CMS officials to circumscribe the definitions
of self-direction and consumer direction--synonyms of each other--to
fit with their own views of how Medicaid might be better operated as a
voucher program. Unfortunately, I frankly think that this is an example
of just that. It would be equally wrong to allow States to do the same
thing. A State that give people the ``choice'' of using an individual
budget should offer them the opportunity and support to direct their
personal care services through other means as well.
States should provide adequate funding for benefits counseling,
recruitment and personal assistance registries, fiscal immediaries and
other services essential to the success of consumer directed services
in way that does not siphon off service dollars from people with
disabilities--New Jersey and Arkansas funded their consumer consulting/
counseling and fiscal intermediary services by charging those with
individual budgets a set monthly user fee (NJ) or taking about a third
of the rate that the state paid to traditional providers to defray such
expenses and cashing out the rest (AR). Unfortunately, both of these
approaches produced adverse impacts. New Jersey's need of monthly
users' fees, for example, led it to limit participants to 19 hours of
consulting a year for which project would pay after the cash plan was
in place. This meant that some who needed substantially more consulting
assistance than others did, and some needed substantially more than
expected did not receive it. New Jersey, like Arkansas, also set funds
aside from the personal care benefit before cashing it out to pay for
these types of administrative services. Arkansas--practice of
discounting in general and taking funds out of the base amount that it
would have otherwise paid to a personal care agency to defer these
costs and gave the remainder to the participant. As I previously noted,
this meant that the discounted care plan hours were cashed out at $8.00
per hour. The difference between $8.00 and the hourly rate the state
paid to traditional providers ($12.36) was used to cover the cost of
counseling/fiscal services. (Page 32). This reduced the individual
budget funds each person could use to actual another person to provide
them needed assistance by slightly over a third. While it might make
some sense to have individuals using these services pay some share of
the costs, it should be a very nominal one. If the federal government
and States are genuinely interested in pursuing these approaches,
funding--separate and above Medicaid services dollars--must be made
available to develop and sustain them.
Conclusion: In terms of were whether the methods used by Arkansas
and New Jersey for determining what a person's personal care
allocations were fair or not, I believe that many, if not most,
participants with sufficient and stable support networks of family and
friends that their respective processes proved to be fair much of the
time. This is because most of these individuals had something to build
and expand upon as well as support to fall back on when all else
failed. But, for those without extensive support networks and/or those
with extensive personal care needs I believe the evidence shows that
the methods proved to be too rigid, unresponsive and ultimately unfair
much of the time. That is not to say that such persons can never
benefit from using an individual budget. Some likely have and more, I
believe, can. It will, however, require significant time and effort to
make this outcome possible and I offer the following recommendations
with this and related aims in mind.
Recommendations: Based on my review of the results of the Cash and
Counseling projects in New Jersey and Arkansas, I believe it is
essential that if other States are to be allowed and urged to use
individual budget as a way to expand community living services to
people with disabilities, the federal government should make clear
that:
--Setting a person's budget at the same amount as called for in
their service plan is permissible so long as:
It is done in a manner that does not disadvantage the person
in anyway;
The State demonstrates that the amount is sufficient enough
for the individual to pay for personal care services to an
extent that is at least commensurate with those he or she would
be able to otherwise receive from Medicaid;
The service plan fairly and accurately reflects the person's
complete personal care needs, including any that currently may
not be being met;
Each person who is considering receiving or currently is
receiving a personal care cash supplement, has the right and
opportunity to request and receive an independent adjustment in
the budget based on needs that are not adequately addressed in
the plan and/or have changed;
The full costs of such an independent adjustment review are
paid for by the State (perhaps with Medicaid administrative
match) but carried out by independent experts whose findings
are binding on the State and the person.
--A State may not use the method known as ``discounting'' or
similar practices to determine the individual budget of a person.
--Prior to agreeing to receive a cash payment, a person and/or
their representative, where appropriate, must receive a statement
summarizing:
The type and number of hour of personal care services he or
she needs; and,
An accurate estimate of what the monthly individual budget
amount can be reasonably expected to purchase.
--Adjustments must be made individual budgets based on changes in
labor supply conditions as frequently as necessary. If reliable workers
cannot be hired and retained at the rate permitted by the individual
budget, the State should increase the monthly allotment as soon as
possible.
--A State that offers people with disabilities needing personal
care the choice of receiving services or a monthly payment to purchase
such supports must:
Assure that whether an individual opts to receive personal
care in the typical manner or through the use of an individual
budget that both methods will enable him or her to receive
equally effective services and supports.
Offer individuals the opportunity and support to direct their
personal care services through other means than through an
individual budget.
Assure that the choice of which method to use will be made on
a well-informed, voluntary basis by the individual or their
representative, where appropriate.
Maintain current level of effort in respect to funding
personal care under the State Medicaid plan.
Provide adequate funding for services such as benefits
counseling, recruitment and personal assistance registries,
fiscal immediaries and other services essential to the success
of consumer directed services in way that does not siphon off
service dollars from people with disabilities.
Question 1b. Do you believe the methods for calculating the
individual budgets under the Independence Plus demonstration have been
fair? Are there appropriate safeguards in the Independence Plus
demonstration to ensure that individual budgets are adequate and fair?
Response: To respond to these questions, I have reviewed the two
template waiver applications developed by CMS to allow States implement
the Administration's Independence Plus initiative as well as other
related materials--available online at http://www.cms.gov/
independenceplus/. The initiative is meant to enable States to offer
eligible families and individuals to receive a cash allowance (in the
Sec. 1115 Demonstration) or individual budget (in the 1915(c) Waiver)
to obtain personal assistant services and related supports. Since the
methods for calculating the individual budgets under the 1115
demonstration and the 1915c waiver authorities are different from each
other I will comment on them separately.
The 1115 Independence Plus Demonstration Process:
To obtain an 1115 waiver for this purpose, a State must assure
that: a. demonstration expenditures will not exceed what would have
been incurred without the demonstration; b. the aggregate cost of
services will be no more than 100% of the cost to provide these
services without the waiver; and c. the plan of care and budget for
plan of care will be developed in the demonstration exactly as they
would have been developed without the waiver. The template furthers
indicates that ``Procedures for determining the amount, duration, and
scope of Personal Care services are (to be) identical for Personal Care
recipients, regardless of whether or not they are part of this
voluntary demonstration program.''
Beyond setting these general parameters, however, the current CMS
1115 template and related materials I reviewed on its Web site do not
lay out any other criteria a State must follow or even consider when
determining what the personal care cash allowance should be. This is
extremely troubling. The 1115 demonstration authority is meant to
enable the federal government and the States to test both the
effectiveness and the fairness of providing Medicaid services through a
variety of means to those eligible to receive them. CMS has a critical
role and responsibility to set out expectations and criteria in an
initiative like Independence Plus to ensure that as States propose to
test various ways of providing personal assistance cash allowances to
that there be nationwide, consistent guidance on how those allowances
should be set in the most effective and fair manner possible.
CMS has already approved an 1115 Independence Plus demonstration
waiver for one State, Florida, and other applications are likely
pending or in development. It has been suggested that the 1115 template
is a living document and that CMS may add additional terms and
conditions to it as the need and opportunity to do so arise. Based on
my review of the Florida 1115 waiver, I would respectfully suggest that
the need to do this is already upon us and I would strongly urge
Congress to convince the agency to move on this front immediately.
Florida's Independence Plus 1115 waiver:
Florida's approach to determining individuals' personal care cash
allowances should be was approved by the Administration this May and
illustrates why CMS should issue clear guidance in this area.
Since Florida participated in the Cash and Counseling project there
are roughly 1500 people with disabilities with individual budgets in
the State already. For this reason, the State has decided to use--and
CMS has approved--several different approaches to determining the
amount of each participant's monthly allowance:
Setting the individual budget amounts of current individual budget
users: Those who were in the Cash and Counseling project will receive a
budget based on prior expenditures and historical claims information.
The person's expenditures for the twelve months prior to enrollment in
the new 1115 waiver will determine the annual budget. If a consumer was
not been in the project for twelve months, the expenditures from at
least 6 months will be used to determine the budget. When less than six
months of data is available, the care plan or support plan will be the
basis for determining the budget amount.
Setting the individual budget amounts of new individual budget
users (i.e., consumers who have received waiver services for six months
or less): The individual budget amount will be set at:
the value of the services authorized in the care plan or
support plan. The value of the authorized services will be
adjusted to accurately reflect the amount that would be spent
on services in the Medicaid waiver Home and Community-Based
Services program. An extensive discount analysis was conducted
to determine what percentage of dollars authorized in a
Medicaid waiver care plan or support plan is actually spent in
each program. For example, on average 89% of the dollars
authorized in a Medicaid waiver care plan for an elder is
actually expended. An elder who has received waiver services
for less than six months, would receive an annual budget equal
to 89% of the value of the services in his/her current care
plan. During the enrollment visit, consumers will be told the
exact budget amount they would receive if randomized to the
experimental group. Consumers will not be able to negotiate a
budget amount with consultants.
Setting the individual budget amounts of persons with developmental
disabilities: The approach requires that:
All individuals receiving services from the Developmental
Services Waiver Program Will have their support plan and cost
plan reviewed and revised as appropriate, providing access to
increased funding appropriated by the 1999 Florida Legislature.
Their budgets will be determined using the care plan method.
Setting the individual budget amounts of elders and adults with
physical disabilities: The approach requires that:
Elders and adults with physical disabilities who have had
substantial changes made to the value of their care plan before
their enrollment will have their budgets determined using the
``care plan method--described above. The Consumer Directed Care
database will track which method is used for each consumer.
See page 9 of Florida's Operational Protocol for this project online at
http://www.cms.hhs.gov/medicaid/1115/flccoperot.pdf.
Concerns with Florida's approaches to setting individual budget
amounts: In my view, the approaches just outlined raise the following
concerns relating to the adequacy, equity and fairness of the manner in
which the State sets individual budget amounts:
Current individual budget users: As indicated previously in respect
to the Cash and Counseling project in Arkansas, the concern that arises
with regard to setting the individual budget amount based on a person's
prior use of services (i.e., the number of hours of services that he or
she ``actually received'') is that this method invariably penalizes for
not receiving services that their plan documents they need for reasons
well beyond their control--they are hospital for two weeks, aides don't
show up, they are unable to hire workers, etc. Simply put, individuals
with significant disabilities are not managed care organizations and
should not be subjected to the same utilization control and discounting
methods to which profit making plans are subjected. If a State wants to
base the amount of a person's ``prior expenditures'' and ``actual hours
of services received'' over some period of time, there may be ways to
build in a greater degree of fairness to the process. For example, a
State could use prior expenditures as a general guide for setting the
amount and then examine the reason(s) for any discrepancy between the
numbers of hours that were ``called for'' in the person's services plan
and the number of hours of services that the person ``actually
received'' during the period. When such a discrepancy is due to factors
that are beyond their control and unrelated to their documented need
for services, the amount of the individual budget should be increased
by the same amount as would have been spent on services that were
called for in the plan but never delivered due to factors beyond their
control. Similarly, a State could use prior expenditures as a general
guide for setting the amount and then set the remainder aside in a
``rainy day account'' that the person could draw on if their current
year spending increased over the previous year based on changes in
their own needs or external conditions (e.g., a shortage of workers,
the need to pay more for fewer hours of personal care services).
Finally, a State could set the individual budget amount at a hundred
percent of the amount required by the services plan. It could then give
the person the discretion to spend up to the amount of services
actually received during the prior 6 to 12 months period and require
the person to seek further consultation if they believe they have to
exceed this sum. In my view, absent taking these or similar steps, a
State like Florida cannot reasonably assure--and the Administration has
no cause to blithely assume--that basing the amount of an individual
budget of a person with significant disabilities will yield adequate or
fair results. I also could find no indication in the materials
submitted by Florida to CMS that it plans to reinvest any savings
generated by this method in improving or increasing community living
services more generally. This troubles me as well.
New individual budget users: The concerns I have in regard to how
the individual budgets of those in this group will be set are
essentially the same as I have just outlined in terms of current users.
I would add one more concern it raises in respect to the use of
discounting. The original idea behind individual budgets was that they
would determined based on the looked needs of a specific person--not on
the basis of some group ``average''--and would, therefore, equip the
person with both the sufficient resources and the sufficient authority
to get personal assistance support needs met. Florida's approach to
determining the budget of new participants resorts to a group
averaging, take it or leave it approach that undercuts in my opinion
much of the intent behind the concept and the potential good that might
come from it as well as set people with significant disabilities up for
failure or worse. Basing individual budgets on a group average hardly
makes the process responsive to differences in individual needs.
Moreover, most people with significant disabilities when given a budget
with a finite amount and told to make it last for the next 12 months
will--I have no doubts--make it last for that period even to the point
of cutting back on needed supports. The Operational Protocol indicates
that:
Adjustments will only be made in response to significant
changes in needs. Consumers may call to inform the consultant
of significant changes in level of care needs or other
significant changes such as loss of caregiver. Or, a consultant
may identify changes which would warrant an adjustment to the
monthly budget amount. Changes in the budget will be granted to
obtain more support when the health or safety of the consumer
is at risk. (See page 9 of Florida's Operational Protocol for
this project online at http://www.cms.hhs.gov/medicaid/1115/
flccoperot.pdf.)
The terms and conditions for Florida's Independence Plus 1115
further specifies that it will provide CMS with: ``procedures for how
the State will work with families who expend their individualized
budget in advance of the re-determination date to assure that services
needed to avoid out-of-home placement and the continuation of the
health and welfare of the individual are available;'' Together these
readjustment processes and procedures may address many, if not all of
my concerns in this regard but having not seen them I can not draw a
conclusion either way. It is disturbing, however, that CMS did not
apparently have greater details in writing prior to granting the wide
sweeping demonstration waiver on such fundamental issues impacting the
fairness and adequacy of Florida's approach as how the State
specifically intends to: 1. Define the key term ``significant changes
in needs''; and, 2. Inform all current and prospective participants of
their right to request such a readjustment and the process they should
follow to do so
Project participants with developmental disabilities, older persons
and adults with physical disabilities: The concerns I have in regard to
how the individual budgets of those in these groups will be set are
essentially the same as I have raised throughout my responses.
Establishing disability and age specific criteria for determining
individual budget amounts: Depending on how they are structured
developing and implementing separate and distinct criteria for
determining individual budget amounts for people with different types
disabilities (cognitive, developmental, physical or psychiatric) and/or
those of different ages (children, working age adults or seniors) will
likely produce polar opposite results. Such criteria can be and I would
argue should be developed in a manner that both recognizes and remedies
inequities which may exist with regard to the degree of access people
in these different groupings have to Medicaid community living services
in a State. Or, such criteria can be developed and put in place in a
way that greatly exacerbates these types of inequities. It is not
possible based on the information available to me, it is impossible to
know what prompted Florida to develop 4 distinct ways to determine the
individual budget amounts for people with different disabilities and
different ages, much less to hazard a guess on what impact they might
ultimately have upon improving or exacerbating access problems. What is
disturbing, however, is CMS did not seem to even consider this question
when granting this waiver and it is certainly not raised or addressed
in the agency's 1115 template application either.
The 1915c Independence Plus Waiver Process:
As I noted at the start of my response, the methods for calculating
the individual budgets under the 1115 demonstration and the 1915c
waiver authorities are different from each other. In some ways, the
template for the 1915c has ``more flesh on the bones'' in the sense
that it gives States a bit more guidance on how individual budget
amounts should be determined. Though as my comments will show I think
CMS needs to provide even further guidance in this area and that any
criteria it sets for determining individual budgets under 1915c should
apply to 1115 Independence Plus demonstrations as well. To date, CMS
has approved 1915c Independence Plus waivers in New Hampshire, South
Carolina and Texas. Time has not permitted me to review the terms and
conditions of any of these
Waivers. Thus, my comments will focus on the template itself. The
template indicates that a State applying for a waiver of this type
needs to:
describe in detail EITHER:
The State 's uniform methodology for the calculation of
individual budgets, OR
The criteria and approval process for entities with which the
State has contracted for day-to-day operations of the program.
This description addresses the minimum requirements that the
methodology utilize actual service utilization and cost data, how the
methodology is explained to the family or individual, the re-
determination process, and how the methodology is open to public
inspection. (Template for 1915c Independence Plus Waivers, page 26,
http://www.cms.gov/independenceplus/1915temp.pdf.)
It further makes clear that: ``Minimum requirements of the
methodology (to be) are that the budget is built upon actual service
utilization and cost data, the methodology is described to the
individual and their family, the methodology is open for inspection by
authorized public entities including, but not limited to, CMS, and
there is a process for re-determination. Although the Medicaid Agency
may contract with another agency or organization for the daily
operation of the waiver program, it must retain the authority to issue
policies, rules and regulations related to the waiver.)'' (Template for
1915c Independence Plus Waivers, page 11, http://www.cms.gov/
independenceplus/1915temp.pdf.)
Issues and Recommendations: Generally speaking, I believe the
provisions in the template that were just cited--while perhaps
representing at least a start at creating consistent, nationwide
guidance in this area--need to be revised, refined and/or strengthened
in each of the following key respects:
Establishing a uniform methodology for the calculation of
individual budgets: CMS must make clear that the purpose of developing
and following an uniform methodology is to assure both the adequacy and
fairness of individual budgets. That is, CMS must make it explicit that
it will evaluate the efficacy of each ``uniform method'' proposed by
States on at least 3 crucial dimensions--whether it is sufficient to:
1. Assure that the individual budget amounts are derived on an
individualized basis that makes certain that the resources allocated to
each waiver participant can be shown to be reasonably adequate to meet
his or her specific personal care needs; 2. Yield individual budget
amounts that are fair and equitably distributed among different
individual budget users and different classes of such users (i.e.,
people with different types of disabilities, of different ages, and/or
those who live in different counties or are served by different
government or private agencies); and, 3. Make certain that people with
disabilities on Medicaid who are eligible but do not choose to have an
individual budget are not penalized by their decision and are offered
other ways to exercise choice and control over their personal care
services as I discussed in my response to Question 1a above.
Creating criteria and approval process for entities with which the
State has contracted for day-to-day operations of the program: CMS must
make clear that entities that a State contracts with to implement the
waiver on a day to day basis must adhere to the uniform methodology the
State sets for determining the individual budget amounts of each
participant in a manner that assures the adequacy and fairness of the
approach with regard to the three dimensions discussed immediately
above and that it: 1. Assures that the individual budget amounts are
derived on an individualized basis that makes certain that the
resources allocated to each waiver participant can be shown to be
reasonably adequate to meet his or her specific personal care needs; 2.
Yields individual budget amounts that are fair and equitably
distributed among different individual budget users and different
classes of such users (i.e., people with different types of
disabilities, of different ages, and/or those who live in different
counties or are served by different government or private agencies);
and, 3. Makes certain that people with disabilities on Medicaid who are
eligible but do not choose to have an individual budget are not
penalized by their decision and are offered other ways to exercise
choice and control over their personal care services as I discussed in
my response to Question 1a above.
Basing the individual budget on ``actual service utilization and
cost data'': I have raised considerable concerns around this approach
already and believe strongly that CMS must take the types of steps I
have recommended throughout my responses to anticipate and address the
unintended and potentially very harmful impacts on people with
disabilities relying on individual budgets set in this manner can and
are likely to produce in my view.
Public participation: It is essential that CMS require the States
to assure the active and informed participation of the public--
particularly people with disabilities, families of children with
disabilities and other representatives--in the design, implementation,
monitoring and evaluation of all such uniform methodologies and related
policies, practices and procedures. This requirement like all others I
have recommended should be applied equally to both the 1115 and 1915c
Independence Plus.
Question 1c. Do you believe federal standards are needed to ensure
that beneficiaries are given enough money under these demonstrations?
If yes, what should those standards look like?
Response. Yes, I believe further federal guidance in this regard
and that it should incorporate and expand upon the recommendations I
have offered in my responses to Questions 1a-1b.
Question 2a. The Independence Plus program, recently initiated by
the Department of Health and Human Services, is an expansion of the
Cash and Counseling program initiated by the Robert Wood Johnson
Foundation. While the two programs share the goal of enabling
individuals with disabilities to live in the community and providing an
appropriate range of personal care services that individuals can self-
direct, there are some important differences between the two programs.
Could you please describe the key differences between the Independence
Plus program and the Cash and Counseling demonstrations?
Response. The Cash and Counseling demonstrations had a very focused
purpose and scope. It was meant to test whether people with
disabilities and their families in appropriate cases could use
individual budgets to purchase a fairly well defined and limited as
well as predictable set of personal care services and whether doing so
would result in getting their needs better met and increased
satisfaction in general. However, there is an increasing concern that I
share that States as well as the Administration will use the
Independence Plus process to cash out basic health care benefits such
as prescription drugs, physician and hospitalization services that: 1.
Extend far outside the purpose and scope the original Cash and
Counseling demonstrations; 2. The need for which, by their very nature,
varies enormously over time and must not be predicated on past ``actual
services received'' or similar methods; and, 3. Cashing such services
out are likely to limit rather than preserving or increasing
beneficiaries access to them for many of the same reasons I have
discussed in my responses thus far. There are, however, differences
between the 1115 and 1915c template in this regard as well; so I will
comment on each individually.
The 1115 Independence Plus Template: I believe the potential for
this to occur is the greatest with regard to the 1115 Independence Plus
demonstrations. The 1115 template permits States to include--in
addition to personal care and other recognized community living
services that States can currently offer through Medicaid--any
``(o)ther services requested by the State and approved by CMS as budget
neutral and necessary to avoid institutionalization.'' (Template for
1115 Independence Plus Waivers, page 7, http://www.cms.gov/
independenceplus/1115temp.pdf ) There are clearly a number of ways
where it could be argued that prescription drugs, physician and
hospitalization services could be offered in a budget neutral manner
under a 1115 and are, of course, essential helping many people with
significant disabilities to avoid unjustified institutionalization. For
the 3 reasons I cited in the last paragraph, though, I do think this is
adequate justification for including them under such waivers.
The 1915c Independence Plus Template: The 1915c template contains
similar language on this point but also says that for services already
covered by the State plan that the waiver must described and presumably
assure that any such services, including those that fall into the
``other services as requested'' category, will ``differ in amount,
scope, supervision arrangements or provider type or be utilized only
when the state plan coverage is exhausted.'' (Template for 1915c
Independence Plus Waivers, page 15, http://www.cms.gov/
independenceplus/1916temp.pdf.). This is an extremely important and
useful clarification to make and one that in my view should be included
in the 1115 template as well. But, even this provision does not really
address the deep concerns I and others have raised with regard to the
harm that could come from cashing out the types of medical and health
services that can only there be carried out by highly trained
professionals and the need for which cannot be reliably predicted in
advance nor predicated on past experience.
Recommendation:
For the reasons just given, CMS should make clear to the States and
the Congress that it will not grant 1115 or 1915c Independence Plus
waivers that would cash out medical and health care services such as
prescription drugs, physician and hospitalization services.
Question 2b. What are your thoughts on whether the changes made
under the Independence Plus demonstration are warranted?
Response. No, I do not for all of the reasons I have discussed.
Question 2c. How could these changes affect beneficiaries? What
should policy makers be looking for in the design and evaluation of
these demonstrations to ensure beneficiaries are protected?
Response. I believe I have addressed the first part of the question
already. In terms of the policy questions that the evaluations of the
Independence Plus demonstrations should be designed and carried out to
help answer I think some of the most crucial ones include:
What are the characteristics of people with disabilities and
families of children with disabilities who are most likely to
get their personal care needs met by using the individual
budget approach?
What are the characteristics of people with disabilities and
families of children with disabilities who are only somewhat
likely to get their personal care needs met by using the
individual budget approach?
What are the characteristics of people with disabilities and
families of children with disabilities who are least likely to
get their personal care needs met by using the individual
budget approach?
What promising practices exist for improving the chances of
those in all 3 of these groups of getting their personal care
needs met by using the individual budget approach?
What impacts do these demonstrations have on those who are
eligible for Medicaid personal care and other community living
services but who not use the individual budget approach?
What other opportunities and/or desires do persons who are
eligible for these services but who do not have individual
budgets have in terms of exercising increased choice and
control over their services either through an individual budget
or other means?
What types of actions should the federal government; the
States and others consider taking based on the responses to
these types of evaluation questions?
Question 3a. Under the Cash and Counseling demonstrations consumers
were given a cash amount to manage certain services provided under
Medicaid, personal care services. These are primarily non-medical
services to provide assistance with activities that are in many
instances of a very private nature--like bathing or dressing. Can you
draw any conclusions from the Cash and Counseling demonstrations about
which services are most appropriate for consumer direction? Is there a
minimal set of services that should be included to ensure that the
programs serve their purpose?
Response: In addition to personal care services, I believe it would
be both reasonable and useful to clearly delineate the only services
that can be offered under an 1115 or 1915c Independence Plus waiver
include other recognized community living services that States can
currently offer through Medicaid either through a State optional
service or a waiver. As I said, the requirement currently in the 1915c
template that services under the waiver ``must differ in amount, scope,
supervision arrangements or provider type or be utilized only when the
state plan coverage is exhausted.'' (Template for 1915c Independence
Plus Waivers, page 15, http://www.cms.gov/independenceplus/
1915temp.pdf.) should be incorporated in the 1115 template as soon as
possible as well.
Question 3b. Are there services that do not lend themselves to
self-direction? For example, do you believe it is appropriate to allow
for consumer direction of acute care services?
Response. As I have said I believe it would have deleterious
impacts on people with disabilities to include any health or medical
services under the rubric of an Independence Plus waiver.
Question 3c. What are the advantages and disadvantages of including
durable medical equipment and home modification costs in individual
budgets and how would this work in practice?
Response. The goods and services that fall into the broad
categories of what constitutes durable medical equipment or home
modifications can range in costs widely from under $50 for purchasing
grab bars to perhaps a hundred or so for installing them to several
thousands of dollars for putting in a roll in shower that enables a
person with limited mobility to shower more easily. Similarly,
purchasing a splint one uses to hold eating utensil or pen may cost a
few dollars while purchasing a motorized wheelchair can cost tens of
thousands of dollars. The practical implications of this I believe are
as follows: It may be useful and reasonable to build in resources to
purchase low to modestly priced durable medical equipment and home
modification good and services into someone's individual budget.
Significant care must be taken, however, to ensure that if this is done
that the resources included for this purpose are over and above those
that the person needs to purchase personal care services. For
expenditures on these types of goods and services a State should
establish a separate fund or consumer friendly process individuals can
use. Many States already have very low to no interest loan programs in
place that people with disabilities can use to obtain needed DME and
home modifications and then pay it back in small monthly installments
over an extended period of 10 years or more. CMS and States should
explore ways to tap or develop such mechanisms under both types of
Independence Plus waivers. It is also extremely important that as
States move in this direction that they and CMS do so in a way that
affords people with disabilities who do not use individual budgets but
use personal care services and need access to DME and/or home
modification goods and services have an equally effective opportunity
and way to obtain them.
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