[House Hearing, 113 Congress]
[From the U.S. Government Publishing Office]
HELPING FAMILIES IN MENTAL HEALTH CRISIS ACT OF 2013
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED THIRTEENTH CONGRESS
SECOND SESSION
__________
APRIL 3, 2014
__________
Serial No. 113-136
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Printed for the use of the Committee on Energy and Commerce
energycommerce.house.gov
______
U.S. GOVERNMENT PUBLISHING OFFICE
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COMMITTEE ON ENERGY AND COMMERCE
FRED UPTON, Michigan
Chairman
RALPH M. HALL, Texas HENRY A. WAXMAN, California
JOE BARTON, Texas Ranking Member
Chairman Emeritus JOHN D. DINGELL, Michigan
ED WHITFIELD, Kentucky Chairman Emeritus
JOHN SHIMKUS, Illinois FRANK PALLONE, Jr., New Jersey
JOSEPH R. PITTS, Pennsylvania BOBBY L. RUSH, Illinois
GREG WALDEN, Oregon ANNA G. ESHOO, California
LEE TERRY, Nebraska ELIOT L. ENGEL, New York
MIKE ROGERS, Michigan GENE GREEN, Texas
TIM MURPHY, Pennsylvania DIANA DeGETTE, Colorado
MICHAEL C. BURGESS, Texas LOIS CAPPS, California
MARSHA BLACKBURN, Tennessee MICHAEL F. DOYLE, Pennsylvania
Vice Chairman JANICE D. SCHAKOWSKY, Illinois
PHIL GINGREY, Georgia JIM MATHESON, Utah
STEVE SCALISE, Louisiana G.K. BUTTERFIELD, North Carolina
ROBERT E. LATTA, Ohio JOHN BARROW, Georgia
CATHY McMORRIS RODGERS, Washington DORIS O. MATSUI, California
GREGG HARPER, Mississippi DONNA M. CHRISTENSEN, Virgin
LEONARD LANCE, New Jersey Islands
BILL CASSIDY, Louisiana KATHY CASTOR, Florida
BRETT GUTHRIE, Kentucky JOHN P. SARBANES, Maryland
PETE OLSON, Texas JERRY McNERNEY, California
DAVID B. McKINLEY, West Virginia BRUCE L. BRALEY, Iowa
CORY GARDNER, Colorado PETER WELCH, Vermont
MIKE POMPEO, Kansas BEN RAY LUJAN, New Mexico
ADAM KINZINGER, Illinois PAUL TONKO, New York
H. MORGAN GRIFFITH, Virginia JOHN A. YARMUTH, Kentucky
GUS M. BILIRAKIS, Florida
BILL JOHNSON, Missouri
BILLY LONG, Missouri
RENEE L. ELLMERS, North Carolina
Subcommittee on Health
JOSEPH R. PITTS, Pennsylvania
Chairman
MICHAEL C. BURGESS, Texas FRANK PALLONE, Jr., New Jersey
Vice Chairman Ranking Member
ED WHITFIELD, Kentucky JOHN D. DINGELL, Michigan
JOHN SHIMKUS, Illinois ELIOT L. ENGEL, New York
MIKE ROGERS, Michigan LOIS CAPPS, California
TIM MURPHY, Pennsylvania JANICE D. SCHAKOWSKY, Illinois
MARSHA BLACKBURN, Tennessee JIM MATHESON, Utah
PHIL GINGREY, Georgia GENE GREEN, Texas
CATHY McMORRIS RODGERS, Washington G.K. BUTTERFIELD, North Carolina
LEONARD LANCE, New Jersey JOHN BARROW, Georgia
BILL CASSIDY, Louisiana DONNA M. CHRISTENSEN, Virgin
BRETT GUTHRIE, Kentucky Islands
H. MORGAN GRIFFITH, Virginia KATHY CASTOR, Florida
GUS M. BILIRAKIS, Florida JOHN P. SARBANES, Maryland
RENEE L. ELLMERS, North Carolina HENRY A. WAXMAN, California (ex
JOE BARTON, Texas officio)
FRED UPTON, Michigan (ex officio)
C O N T E N T S
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Page
Hon. Joseph R. Pitts, a Representative in Congress from the
Commonwealth of Pennsylvania, opening statement................ 1
Prepared statement........................................... 2
Hon. Tim Murphy, a Representative in Congress from the
Commonwealth of Pennsylvania, opening statement................ 2
Hon. Frank Pallone, Jr., a Representative in Congress from the
State of New Jersey, opening statement......................... 4
Hon. Fred Upton, a Representative in Congress from the State of
Michigan, opening statement.................................... 6
Prepared statement........................................... 6
Hon. Henry A. Waxman, a Representative in Congress from the State
of California, opening statement............................... 8
Witnesses
Sylvia Thompson, Patient Advocate and President, National
Alliance on Mental Illness, West Side Los Angeles.............. 10
Prepared statement........................................... 12
David L. Shern, Interim President and CEO, Mental Health America,
Alexandria, Virginia........................................... 22
Prepared statement........................................... 24
Answers to submitted questions............................... 125
Nancy Jensen, person with lived experience, Wichita, Kansas...... 30
Prepared statement........................................... 32
Mary T. Zdanowicz, Attorney, North Eastham, Massachusetts........ 41
Prepared statement........................................... 43
Michael Welner, M.D., Founder and Chairman, The Forensic Panel... 50
Prepared statement........................................... 51
Answers to submitted questions \1\........................... 131
Submitted Material
Statement of the American Psychiatric Association, submitted by
Mr. Pitts...................................................... 86
Article entitled, ``The Definition of Insanity: How a federal
agency undermines treatment for the mentally ill,'' The Wall
Street Journal, March 31, 2014, submitted by Mr. Pitts......... 88
Statement of Robert Bruce, submitted by Mr. Pitts................ 90
Article entitled A Mental-Health Overhaul: A Congressman produces
a set of good ideas for a difficult problem, the Wall Street
Journal, December 26, 2013, submitted by Mr. Pitts............. 99
Op-Ed by Hon. Tim Murphy, The Philadelphia Inquirer, January 26,
2014, submitted by Mr. Pitts................................... 101
Statement of the American Bar Association, submitted by Mr. Pitts 103
Statement of the National Disability Rights Network, submitted by
Mr. Pitts...................................................... 105
Statement of the National Coalition for Mental Health Recovery,
submitted by Mr. Pitts......................................... 108
Statement of the Citizen Commission on Human Rights International
\2\, submitted by Mr. Pitts.................................... 85
Statement of the Consortium for Citizens with Disabilities,
submitted by Mr. Pitts......................................... 112
Statement of the Bazelon Center for Mental Health Law, submitted
by Mr. Pitts................................................... 118
----------
\1\ Dr. Welner's response to submitted questions for the record
can be found at http://docs.house.gov/meetings/if/if14/
20140403/102059/hhrg-113-if14-wstate-welnerm-20140403-
sd002.pdf.
\2\ The statement can be found at http://docs.house.gov/meetings/
if/if14/20140403/102059/hhrg-113-if14-20140403-sd008.pdf.
HELPING FAMILIES IN MENTAL HEALTH CRISIS ACT OF 2013
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THURSDAY, APRIL 3, 2014
House of Representatives,
Subcommittee on Health,
Committee on Energy and Commerce,
Washington, DC.
The subcommittee met, pursuant to call, at 10:31 a.m., in
room 2322 of the Rayburn House Office Building, Hon. Joe Pitts
(chairman of the subcommittee) presiding.
Present: Representatives Pitts, Burgess, Murphy, Blackburn,
Gingrey, Lance, Cassidy, Guthrie, Griffith, Bilirakis, Ellmers,
Upton (ex officio), Pallone, Capps, Schakowsky, Green,
Butterfield, Barrow, Christensen, Sarbanes, DeGette, Tonko, and
Waxman (ex officio).
Staff present: Clay Alspach, Chief Counsel, Health; Mike
Bloomquist, General Counsel; Sean Bonyun, Communications
Director; Karen Christian, Chief Counsel, Oversight; Noelle
Clemente, Press Secretary; Brenda Destro, Professional Staff
Member, Health; Brad Grantz, Policy Coordinator, Oversight and
Investigations; Sydne Harwick, Legislative Clerk; Robert Horne,
Professional Staff Member, Health; Katie Novaria, Professional
Staff Member, Health; Sam Spector, Counsel, Oversight; Heidi
Stirrup, Health Policy Coordinator; Tom Wilbur, Digital Media
Advisor; Ziky Ababiya, Democratic Staff Assistant; Karen
Lightfoot, Democratic Communications Director and Senior Policy
Advisor; Karen Nelson, Democratic Deputy Committee Staff
Director for Health, Anne Morris Reid, Democratic Senior
Professional Staff Member; and Matt Siegler, Democratic
Counsel.
OPENING STATEMENT OF HON. JOSEPH R. PITTS, A REPRESENTATIVE IN
CONGRESS FROM THE COMMONWEALTH OF PENNSYLVANIA
Mr. Pitts. The subcommittee will come to order. The Chair
will recognize himself for an opening statement.
Millions of Americans suffer with severe mental illnesses,
such as bipolar disorder, schizophrenia, and major depression,
and many of them, and their families, struggle to find the
treatment and help they desperately need.
I would like to commend my colleague from Pennsylvania, Dr.
Murphy, for his yearlong investigation into mental health
issues and for proposing H.R. 3717, the Helping Families in
Mental Health Crisis Act. Briefly, this bill would reform the
Community Mental Health Services Block Grant program by
changing administration, improving data collection, and by
requiring treatment standards to facilitate care. It would
enhance Medicaid payments to Federally Qualified Community
Behavioral Health Centers (FQCBHCs), make adjustments to HIPAA
and FERPA--the Family Education Rights and Privacy Act--privacy
regulations, and expand access to certain medical records for
qualifying caregivers; create an Assistant Secretary for Mental
Health who will be responsible for coordinating spending at all
federal agencies on mental health, including at the Substance
Abuse and Mental Health Services Administration (SAMHSA). It
would make changes to key Justice Department regulations that
impact at-risk or imprisoned individuals with mental illness.
It would increase federal funding for certain Medicaid
providers and research at the National Institutes of Health. It
would institute liability protections for physician volunteers
at FQCBHCs, and it would reform existing mental health programs
at SAMHSA.
I would like to welcome all of our witnesses here today. We
look forward to learning from your expertise and experience.
[The prepared statement of Mr. Pitts follows:]
Prepared statement of Hon. Joseph R. Pitts
The Subcommittee will come to order.
The Chair will recognize himself for an opening statement.
Millions of Americans suffer with severe mental illnesses,
such as bipolar disorder, schizophrenia, and major depression,
and many of them--and their families--struggle to find the
treatment and help they desperately need.
I would like to commend my colleague from Pennsylvania, Dr.
Murphy, for his year-long investigation into mental health
issues and for proposing H.R. 3717, the Helping Families in
Mental Health Crisis Act. Briefly, this bill would:
Reform the Community Mental Health Services Block
Grant Program by changing administration, improving data
collection, and by requiring treatment standards to facilitate
care;
Enhance Medicaid payments to Federally Qualified
Community Behavioral Health Centers (FQCBHCS);
Make adjustments to HIPAA and FERPA (the Family
Education Rights and Privacy Act) privacy regulations and
expand access to certain medical records for qualifying
caregivers;
Create an Assistant Secretary for Mental Health
who will be responsible for coordinating spending at all
federal agencies on mental health, including at the Substance
Abuse and Mental Health Services Administration (SAMHSA);
Make changes to key Justice Department regulations
that impact at-risk or imprisoned individuals with mental
illness;
Increase federal funding for certain Medicaid
providers and research at the National Institutes of Health;
Institute liability protections for physician
volunteers at FQCBHCS; and
Reform existing mental health programs at SAMHSA.
I would like to welcome all of our witnesses here today. We
look forward to learning from your expertise and experience.
Thank you, and I yield the remainder of my time to --------
----------------------------------.
Mr. Pitts. I will yield the balance of my time to the
gentleman from Pennsylvania, Dr. Murphy.
OPENING STATEMENT OF HON. TIM MURPHY, A REPRESENTATIVE IN
CONGRESS FROM THE COMMONWEALTH OF PENNSYLVANIA
Mr. Murphy. I thank the chairman for convening this
hearing, and I want to thank the witnesses for being here as
well.
In light of yesterday's tragic shooting at Fort Hood
involving a soldier under treatment for a behavioral health
disorder, and news this week out of Pittsburgh of a mother who
said she heard voices commanding her to drown her two young
children in a bathtub, today's hearing has a sad element of
timeliness to it. But let us keep in mind, most persons with
mental illness are not violent, and tragically, are more
frequently the victims of violence, but you will never hear the
breaking news of a homeless man being robbed or beaten or a
person with mental illness losing their job.
Over the last year, the Oversight and Investigations
Subcommittee I chair held a series of forums and hearings to
review our Nation's mental health system, and this bill, the
Helping Families in Mental Health Crisis Act, is a result of
those hearings, and with anything, there is misinformation
about this legislation, which is why I am glad you have
convened this hearing so we can continue to work forward on
perfecting it.
Fifty years ago, our Nation confronted the atrocities of
asylums, warehouses for those whose illnesses medical science
could not yet treat, and at that time this committee moved
legislation to close those places and help individuals live in
the community. Many were getting treatment and many were not,
and for half a century operated under the illusion that having
done something, we did the right thing. We didn't.
Unfortunately, that illusion has been shattered by the
heartbreaking daily tragedies that prove our mental health
system is broken and failing the very people who need help
most. The stories are haunting and the numbers are staggering.
3.6 million people with serious mental illness don't get
treatment. There are over 40,000 suicides a year, 20 soldier
suicides each day. Another 1.3 million attempted suicides.
There is only one child psychiatrist for every 2,000
children with a mental health disorder. It is a system where
the three largest mental health hospitals are actually jails,
and there is a shortage of 100,000 psychiatric beds nationwide
for those who are in acute crisis.
A rule to protect privacy needs clarification because it
has frustrated a countless number of physicians and members and
generated over 70,000 complaints, and the mental health agency
that until recently employed as many dentists as it did
psychologists and psychiatrists, and this is what the American
taxpayer buys for $125 billion.
That is why we introduced this bill, to engage in
meaningful reform. It has several of those elements that just
presented by the chairman in empowering parents and caregivers
by breaking down the barriers that prevent communication,
increases access to acute care psychiatric beds, provides
alternatives to inpatient care through assisted outpatient
treatment, and expands access to the underserved and rural
populations; creates an Assistant Secretary of Mental Health to
scrutinize federal programs and promote evidence-based care;
ensures mental health patients enrolled in Medicare and
Medicaid have access to the full range of medications that keep
them healthy and out of the hospital; advances critical
research at the National Institutes of Mental Health like the
Brain Research Initiative; promotes promising evidence-based
care like the recovery after initial schizophrenic episode;
improves quality and expands access to integrated medical and
mental health care at community mental health providers,
extends health information technologies so mental health
providers can communicate and work with primary care
physicians, and ensures greater accountability from the
Substance Abuse and Mental Health Service Administration.
For far too long, those who need help have been getting it
the least, and where there is no help, there is no hope. We
can, must and will take mental illness out of the shadows of
ignorance, despair, neglect and denial and into that bright
light of hope, and it starts with the Helping Families in
Mental Health Crisis Act.
I look forward to hearing the comments of our witnesses
today. I yield back.
Mr. Pitts. The chair thanks the gentleman and now
recognizes the ranking member of the subcommittee, Mr. Pallone,
for 5 minutes for an opening statement.
OPENING STATEMENT OF HON. FRANK PALLONE, JR., A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF NEW JERSEY
Mr. Pallone. Thank you, Chairman Pitts.
This is our subcommittee's first proceeding on mental
health during this Congress, and while I am thankful to you for
finally convening a panel to talk about this critically
important issue, I remain conflicted and disappointed that you
have decided to move straight to a legislative hearing.
For over a year we have had personal and staff discussions
about the importance of the Health Subcommittee examining
mental health in light of some heartbreaking events in the past
couple of years, and despite this today, I and other members of
the subcommittee are at a significant disadvantage because we
haven't been afforded an opportunity to be at the forefront of
evaluating and focusing on mental illness. As the Health
Subcommittee, we should be the ones putting a full-scale effort
into reviewing this and understanding it better.
Mental illness is an important public health issue.
According to numbers from the National Alliance on Mental
Health, it is estimated that one in four adults experience a
mental illness during the course of a given year. That is about
55.7 million people. Meanwhile, only about 60 percent of people
with mental illness get treatment each year. Of these people,
approximately 11.4 million adults in the United States live
with a serious mental illness, which includes, among others,
major depression, schizophrenia, and bipolar disorder.
Individuals with serious mental illness can be treated
effectively, but unfortunately, it has been so difficult for
those who need services to break through the stigma and weigh
the obstacles associated with mental health, even though we
know how important mental health is and how interlinked it is
to all aspects of health and quality of life.
What some people may not realize is that mental illness is
not an isolated public health problem. Cardiovascular disease,
diabetes, and obesity often coexist with mental illness and
treatment of the mental illness can reduce the effects of these
disorders. So it is proven that people, families, and
communities will benefit from increased access to mental health
services. Despite recent vigorous debate about America's mental
health policies, there has been no clear solution yet. However,
we made some significant steps over recent years. The first
significant milestone was the Paul Wellstone Mental Health
Parity and Addiction Equity Act, which makes sure that large
employer-based insurers cannot charge more or place greater
restrictions on mental health benefits that they do for medical
benefits. This parity law marked a dramatic and historic step
for the rights of Americans with mental health and addiction
illness. When I was the chairman of the Health Subcommittee, I
was proud to help play a critical role in enacting this
bipartisan legislation.
Of course, the parity struggle is not over. The
implementation of this law is critical. Specifically, we need
to ensure that there are measures in place for meaningful
reporting on compliance with the law.
Another significant milestone was passage of the Affordable
Care Act. It includes a number of provisions aimed at improving
coverage for and access to mental health services. So let me
point out some of the critical details in the ACA. First,
people can no longer be denied coverage because of preexisting
conditions, and this includes mental health illness; more
access to the Medicaid program, which has always provided a
number of mental health treatments. Mental health treatment now
comes standard. Every health plan sold through an exchange has
to cover a variety of medical services, which includes mental
health and substance abuse treatments. And finally, the ACA
extends mental health parity to all Americans, not just those
who are covered by large employers, again, building upon the
Paul Wellstone law.
Mr. Chairman, these are just the highlights of the law the
Republicans aim to repeal. The ACA also includes a number of
provisions that specifically list mental health and substance
abuse as priority topics in programs like the National
Prevention Council, health workforce development initiatives
and medical homes, and there is still a lot more to do. People
will only benefit from the progress we have made if services
are available and if those who need help are not afraid to seek
it. We need to build from these laws to support the continuum
of mental health services at all levels of government.
That is why I believe we must support efforts to increase
awareness about mental health and reduce the fear, shame, and
misperceptions that often prevent people from getting the help
they need, and I am committing to spreading the message that it
is OK to talk about mental health because treatment is
effective and people do recover. We must find out which
treatments are the right treatments and how we can best
identify Americans who need help, and that is why agencies such
as the Substance Abuse and Mental Health Services
Administration and NIMH are so important.
So Mr. Chairman, there are a number of Democrats on the
committee who have introduced legislation and expressed
interesting in working together to improve mental health in
this country. I hope that if you choose to move forward on the
bill under consideration today that we can find common ground
and pass bipartisan legislation. I have some serious concerns
about some of the provisions of H.R. 3717 but I remain
committed to working with you and my other colleagues on the
committee as we make mental health a priority.
Thank you, Mr. Chairman.
Mr. Pitts. The chair thanks the gentleman and now
recognizes the chairman of the full committee, the gentleman
from Michigan, Mr. Upton, for 5 minutes for an opening
statement.
OPENING STATEMENT OF HON. FRED UPTON, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF MICHIGAN
Mr. Upton. Well, thank you, Mr. Chairman.
Mental illness affects millions of Americans and their
families, yet sadly it is a subject often left unmentioned in
Congress and in communities across the country, and we are
working to change that. Yes, we are. Ensuring treatments and
resources are available and effectively used for those
suffering with mental illnesses has been a priority of this
committee throughout the 113th Congress.
Since January of last year, Oversight and Investigations
Subcommittee Chairman Tim Murphy has spearheaded a thorough
review of all federal mental health programs. The subcommittee
and the committee held a series of public forums, briefings and
investigative hearings to discern how federal dollars devoted
to research and treatment into mental illness are being
prioritized and spent. I want to commend him and those of
efforts, and those of the ranking member of the Oversight and
Investigations Subcommittee, Diana DeGette, to ensure a
bipartisan focus on these vital issues.
To address the gaps discovered in the extensive and wide-
ranging examination, Chairman Murphy introduced H.R. 3717 last
year, the Helping Families in Mental Health Crisis Act of 2013.
The bill addresses issues that are important in diagnosing and
treating individuals with serious mental illness. It would
reorient federal funding for mental health to improve the
delivery of mental health services and help improve the lives
of mental health patients and their families.
I am pleased that two important provisions of that bill
were included in H.R. 4302 that the President signed earlier
this week, which was sponsored, of course, the overall bill by
Chairman Pitts. The first provision will help local
jurisdictions implement assisted outpatient treatment grant
programs, and the second will improve access to community
mental health services, bipartisan and bicameral support for
both of those provisions.
I would just like to add that to those families who have
been impacted by mental illness in some form, Congress is aware
of your plight and we can do better.
I yield the balance of my time to the vice chair of the
subcommittee, Dr. Burgess.
[The prepared statement of Mr. Upton follows:]
Prepared statement of Hon. Fred Upton
Mental illness affects millions of Americans and their
families, yet sadly it is a subject often left unmentioned in
Congress and in communities across the country. We are working
to change that. Ensuring treatments and resources are available
and effectively used for those suffering with mental illnesses
has been a priority of this committee throughout the 113th
Congress.
Since January 2013, Oversight and Investigations
Subcommittee Chairman Tim Murphy has spearheaded a thorough
review of all federal mental health programs. The committee
held a series of public forums, briefings, and investigative
hearings to discern how federal dollars devoted to research and
treatment into mental illness are being prioritized and spent.
I want to commend Chairman Murphy's efforts, and those of the
Ranking Member of the Oversight and Investigations
Subcommittee, Diana DeGette, to ensure a bipartisan focus on
these vital issues.
To address the gaps discovered in the extensive and wide-
ranging examination, Chairman Murphy introduced H.R. 3717, the
Helping Families in Mental Health Crisis Act of 2013. The bill
addresses issues important in diagnosing and treating
individuals with serious mental illness. It would reorient
federal funding for mental health to improve the delivery of
mental health services and help improve the lives of mental
health patients and their families.
I am pleased that two important provisions of H.R. 3717
were included in H.R. 4302, the Protecting Access to Medicare
Act of 2014, which was sponsored by Health Subcommittee
Chairman Pitts and recently signed by the president. The first
provision will help local jurisdictions implement assisted
outpatient treatment grant programs, and the second will
improve access to community mental health services.
I would just like to add that to those families who have
been impacted by mental illness in some form--Congress is aware
of your plight and we can do better.
I'd like to thank the witnesses for taking the time to
testify before the Subcommittee this morning. I yield the
remainder of my time to --------------------------------------
----.
Mr. Burgess. Well, I thank the chairman for yielding. I
really do not have prepared comments this morning but I did
feel obligated to respond.
I am the vice chairman of this subcommittee as well as the
vice chairman of the Oversight and Investigations Subcommittee,
and in total, the committee through its subcommittees, this
represents the eighth dedicated hearing to mental health and
mental health issues between the Oversight and Investigations
Subcommittee and the Subcommittee on Health and the full
committee in general. So it is not from lack of attention.
Chairman Murphy has made this the centerpiece of his
chairmanship of the Oversight and Investigations Subcommittee,
which is appropriate but that is not a legislative committee,
so today we are in the Health Subcommittee, and Chairman Pitts
is encouraging us to have this legislation hearing on
Congressman Murphy's efforts.
And then as a Texan, I just have to say across the country,
our hearts are heavy because of what we saw down in Fort Hood
last evening. When the news stories began to break, I am sure I
felt the same as everyone else across the country felt: oh, no,
not again. It seems like just a few months ago that we were
down for the memorial service for the 13 soldiers who were lost
in November of 2009, and now we are facing another series of
questions surrounding another incident yesterday.
We know there will be an investigation. We know there will
be answers to the questions that are forthcoming, but right now
please let us keep in our thoughts the soldiers at Fort Hood,
their general officer corps, of course the people in Killeen,
Texas, Harker Heights, Coppers Cove, those communities. I will
tell you from firsthand experience during the memorial service
4 \1/2\ years ago, those communities came together and embraced
the soldiers at Fort Hood and let them know they were not
acting alone. Our military has been under great stress for the
last decade. Surely this is something they didn't need but we
can all stand in their support.
Thank you, Mr. Chairman. I will yield back.
Mr. Pitts. The chair thanks the gentleman and now
recognizes the ranking member of the full committee, Mr.
Waxman, 5 minutes for an opening statement.
OPENING STATEMENT OF HON. HENRY A. WAXMAN, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CALIFORNIA
Mr. Waxman. Thank you, Mr. Chairman.
One in four adults has a diagnosable form of mental illness
in any given year. More than 10 million Americans are living
with serious mental illness, conditions like schizophrenia and
major depression. But even as the demand for mental health
services has increased, there has been an unprecedented decline
in state public mental health spending. The Federal Government
has stepped in to help fill the gap. The increased coverage
provided by the Affordable Care Act and the mental health
benefits it requires will make a substantial improvement in the
lives of Americans who need these services. Already more than 7
million Americans signed up for insurance coverage through the
marketplaces that includes mental health and substance use
disorder services at parity with medical and surgical benefits.
The expansion of Medicaid in many states, but not all
unfortunately, has also made a huge difference, giving millions
more comparable behavioral health coverage. But there is
certainly more that can be done.
Today's hearing is focused on one bill, legislation
introduced by Congressman Murphy, H.R. 3717, the Helping
Families in Mental Health Crisis Act of 2013. There are some
provisions in H.R. 3717 that I strongly support. I support
reauthorization of programs with strong bipartisan backing like
the Garrett Lee Smith Suicide Prevention program and National
Child Traumatic Stress Initiative. I support the provisions
recognizing the important work of the National Institute of
Mental Health on brain research that will help us better
understand the causes of mental illness. I support the campaign
to raise awareness regarding mental illness among our young
people, and I support the proposal that would extend electronic
health record meaningful use incentive payments to mental
health providers.
But I must express deep concern about other provisions in
this bill. I think the bill broadly redefines the privacy
rights of individuals with a diagnosed mental illness. This
could discourage many people who need to come forward for care
from seeking necessary treatment if they fear their privacy
won't be protected. The bill cuts federal support for mental
health services administered through the Community Mental
Health Services Block Grant and conditions States' ongoing
support on the adoption of new federal standards for
involuntary treatment that would displace current law. So you
have the Federal Government cutting the funds but saying if you
are going to get funds that are left, you have to do it the way
we tell you to do it. This has always been a State
responsibility. This is a one-size-fits-all response. I am not
sure if that is the best way for us to approach it.
It proposes a dramatic reorganization of mental health
authorities in the Department of Health and Human Services that
would minimize the role of the main agency on mental health--
the Substance Abuse Mental Health Services Administration--and
would reverse efforts to better coordinate mental health and
substance abuse activities. Separation of these two programs--I
can't understand the reasoning behind it. And the bill
undermines the important work of the protection and advocacy
programs that protect the rights of people with mental illness
from abuse and neglect.
The bill has an important provision in it that I think we
need to look very carefully at, and that is the expansion of
Medicaid coverage that we are going to mandate under Medicaid,
and I think the responsibility of the states that have been
paying for it and shifting those costs to the Federal
Government. This could be billions and billions and billions of
dollars at a time when we hear so often from the other side of
the aisle we can't afford the entitlements of Medicaid the
entitlements of poor people, and a lot of poor people have the
greatest problem in accessing mental health services.
Last year, I and other Democrats introduced mental health
legislation but key provisions from that legislation are absent
in Congressman Murphy's bill. Any bill we advance should
include investments in mental health first aid, mental health
in the schools, and mental health provider workforce
development. We should be looking at all ideas that have been
put forward and working in a bipartisan manner on legislation
to achieve our shares the goal of improving our system.
I want to thank all of the witnesses for appearing before
us today. In particular, I want to take a moment to recognize
Ms. Jensen, who will share her own personal history with mental
illness and road to recovery. I also want to acknowledge Ms.
Thompson, who is a constituent of mine, and will discuss her
experience as the daughter of a mother with serious mental
illness. And Ms. Zdanowicz, I know family members close to you
also have a history of mental illness, and that is true of Dr.
Shern as well. It takes a great deal of courage for you to come
here and speak out publicly about such difficult experiences,
but it is important for the subcommittee to hear your
perspectives and to share it with our other colleagues in the
Congress.
Thank you, Mr. Chairman.
Mr. Pitts. The Chair thanks the gentleman. That concludes
opening statements. All members' opening statements will be
made a part of the record.
I have a UC request. At this time I would ask unanimous
consent to enter these documents into the record: one by the
American Psychiatric Association, a Wall Street Journal article
titled ``The Definition of Insanity: How a Federal Agency
undermines treatment for the Mentally Ill,'' a statement by
Robert Bruce, another Wall Street Journal article dated
December 26, 2013, and an op-ed by Congressman Murphy that
appeared in the Philadelphia Inquirer January 26, 2014. Without
objection, so ordered.
[The information appears at the conclusion of the hearing.]
Mr. Pitts. We have one panel today with five witnesses. I
will introduce them in the order that they speak.
Unfortunately, our first witness, Dr. Michael Welner, is still
on a train delayed. He will be coming in at any minute. He is
Founder and Chairman of the Forensic Panel. Ms. Sylvia
Thompson, Patient Advocate and President of the National
Alliance on Mental Illness; Dr. David Shern, Interim President
and CEO of Mental Health America; Ms. Nancy Jensen, a person
with lived experience, and Ms. Mary Zdanowicz, Attorney and
former Executive Director of the Treatment Advocacy Center.
Thank you all for coming. Your written testimony will be
made a part of the record. You will each be given 5 minutes to
summarize your written testimony, and we will begin with Ms.
Thompson. Ms. Thompson, you are recognized for 5 minutes.
STATEMENTS OF SYLVIA THOMPSON, PATIENT ADVOCATE AND PRESIDENT,
NATIONAL ALLIANCE ON MENTAL ILLNESS, WEST SIDE LOS ANGELES; DR.
DAVID L. SHERN, INTERIM PRESIDENT AND CEO, MENTAL HEALTH
AMERICA, ALEXANDRIA, VIRGINIA; NANCY JENSEN, PERSON WITH LIVED
EXPERIENCE, WICHITA, KANSAS; AND MARY T. ZDANOWICZ, ATTORNEY,
NORTH EASTHAM, MASSACHUSETTS
STATEMENT OF SYLVIA THOMPSON
Ms. Thompson. Thank you, Mr. Chairman and members of the
committee, Representative Waxman. My name is Sylvia Thompson
and I am a Professional Care Manager as well as President of
NAMI's West Side Los Angeles affiliate, but that is not why I
am here today.
Today I am my mother's daughter. My mother was severely
mentally ill from as far back as I can remember. So growing up
in my family was like living in a combat zone. It never felt
safe because of her drastic mood changes, paranoia, grandiose
ideas, impulsivity, delusions, depression and inappropriate
anger often directed at me. As much as we loved our mother, my
family was powerless to help her because she did not believe
she was ill. It is called anosognosia. It affects up to 40
percent of those with schizophrenia and bipolar disorder, and
that is a conservative estimate. Because she didn't believe she
was ill, she would not stay in treatment so she could not take
care of herself nor could she take care of me. She had suicidal
ideation, delusions, hospitalizations, believed I was
possessed, and would disappear for days or weeks.
I am a firm believer in self-determination but for those
that are capable. We must recognize there is a whole group of
people like my mother who are too ill to self-direct their own
care. Just take a look at the news. We can't pretend these
people don't exist. These tragic stories like this morning,
they are not the face of mental illness. They are the face of
mental illness that is severe mental illness that is left
untreated.
Our helpline is flooded with calls from family members of
individuals who are imprisoned by their delusions and
hallucinations. Parents beg for treatment and cannot get it.
The current mental health system doesn't help them because
their child is too ill to volunteer for treatment. The police
can't help until after they become dangerous. It can't be a
recovery model or a medical model. We must embrace both because
one size does not fit all.
Sometimes the recovery model works but sometimes assisted
outpatient treatment or involuntary hospitalization is
initially necessary to get somebody on the recovery path. AOT
would help the few who have a past history of multiple arrests,
violence or hospitalizations caused by refusing to stay in
treatment. Studies show AOT reduces homelessness,
incarceration, suicide, arrest, and yes, violence. It saves
money. It reduces force and it saves lives. We need more
hospital beds. California has only five state hospitals with
less than 7,000 beds. Because of that, Californians with severe
mental illness are four times more likely to be incarcerated
than hospitalized--four times. That would never be tolerated
for cancer or Alzheimer's disease. Even at its best, California
would be short over 10,000 hospital beds to help the most
severely mentally ill get stabilized. We can't pretend that
hospitals are not needed.
We have to free family caretakers from HIPAA handcuffs so
they can provide care to loved ones. How can someone ensure
their loved one has transportation to an appointment if they
don't know when the appointment is, or ensure they stay on
their medications if they don't know what the medicines are. We
have to prioritize the most severely ill and stop funding non-
evidence-based programs and groups that impede care for the
most seriously ill.
Congress created SAMHSA to target mental health services to
the people most in need. Only four in the 288 programs in
SAMHSA's national registry of evidence-based practices focus on
severe mental illness. That is four out of 288.
I urge you to pass H.R. 3717. I am not a politician, I am
not a legislator, but I am someone who has spent her life in
the trenches personally and now professionally. It is wonderful
to want to improve mental health for everyone but in the
process we absolutely cannot ignore the most severely ill. They
are the most vulnerable and they need your help.
My mother struggled my whole life. Before we gained
guardianship, she was living in a state of squalor surrounded
by stacks of newspaper, rotten food, human feces, dead rodents.
That was how she self-directed her care. No one chooses that
life. But you should also know, she spoke seven languages
fluently. She knew every opera libretto and she was a gifted
pianist. She was passionate, she was creative and she was
loving. She was someone's daughter, she was someone's sister,
she was someone's wife, and she was the mother to six amazing
children who were desperate for her to be well again.
My mother's inability to acknowledge her illness was not a
choice. It was a symptom that trapped her and robbed all of us
of her greatness, robbed me of my mother. I am proud to be my
mother's daughter. I inherited her passion, her creativity, her
outside-the-box thinking. In her memory and to prevent others
from going through what she and our family did, I implore you
all to please work together to pass H.R. 3717. Thank you.
[The prepared statement of Ms. Thompson follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Mr. Pitts. The chair thanks the gentlelady and now
recognizes Dr. Shern five minutes for his opening statement.
STATEMENT OF DAVID L. SHERN
Mr. Shern. Thank you, Mr. Pitts, members of the committee.
I am the Interim President and CEO of Mental Health America,
which is the Nation's oldest mental health advocacy
organization. We are 105 years old this year. We were founded
by a person who had bipolar illness and have throughout our
history stood very firmly for the full inclusion of people with
mental illnesses in every aspect of American life. We have 240
affiliates around the country, approximately, and are very
concerned with America's mental health from a public health
perspective.
Prior to joining Mental Health America, I was a tenured
Professor and Dean at the University of South Florida and a
mental health researcher, a psychologist by training, and I
spent my professional career really studying systems of care
for people with severe mental illnesses, and of particular
relevance, I think, for our discussion today was a program, an
NIMH-funded program that we conducted in New York City, an
experimental program using psychiatric rehabilitation
technology to engage and serve persons with severe mental
illnesses who are homeless, living on the streets of New York
City, about 60 percent of whom also had very serious addiction
disorders. We were able through the use of peer counselors who
are involved in the program and a very well understood
technology, psychiatric rehabilitation technology developed by
Boston University to engage this very difficult to treat, most
in need group of individuals. We did that by emphasizing the
fact that they had choices in terms of how they could organize
their recovery and empowered them to express those choices and
empowered our team, our treatment team, to enact those choices.
Through that process, we successfully housed the majority
of clients. We significantly reduced their level of psychiatric
symptomatology. We improved their quality of life.
The important point is, I thought about these issues a lot,
and it is clear to me that we have technologies that can be
used to engage individuals in care. We don't always do it, but
those technologies are available to us and our challenge is to
try to implement them more effectively.
I am also a family member. I think everyone here is a
family member. I have a feeling if we queried the committee, we
would find out that there is not one degree of separation
between many of us and a family member who has a mental health
problem. My nephew had severe bipolar disorder, particularly
when he was in high school, and even though I knew all the
people in the United States who developed the evidence-based
practices for this because of the inadequate system of care, in
this case in Pueblo, Colorado, we couldn't get Kyle what he
needed. Fortunately, my family had the resources to get him
into residential care and he is doing fine now, but we went
through a very difficult time, a time when he was confused
about what was going on with him and so I am very sensitive to
these issues.
The reason that I left academia and entered advocacy was to
try to close this gap between what we know and what is
routinely available to people, and there are many aspects, as
many of you have commented already, many aspects of this
legislation that are very important and that will seek to do
that, to expand coverage, and as many people have expressed, we
are very enthusiastic and supportive of those.
There are, however, some aspects about which we are very
concerned. We are concerned with the emphasis on assisted
outpatient treatment. It is very clear to us that the issue is
having a full engagement-oriented system of care for
individuals and making those services available to those
individuals. We are concerned with expansion of the IMD
exclusion, focusing only on one type of care when we realize,
as Dr. Arthur Evans testified last week, that is in fact a
continuum of care which is most important.
We are concerned with what we conceive as an attack on the
protection and advocacy system and what we conceive as some
very fundamental misunderstandings about the role of the
Substance Abuse and Mental Health Services Administration in
leading the Nation's health. From our perspective, SAMHSA has
led every major mental health reform during the last 50 years.
Is our system what we think it should be? No, it is fragmented,
it is broken and it is not responding to people. Do we have the
technology to make a difference? Yes, we do. Are we
implementing that technology? No, we are not. There are several
aspects of this bill which will help with that. However, there
are some premises and some assumptions that are very concerning
for us and that we feel ultimately will damage the system and
will make it in fact more difficult for people to access the
services that they need.
We have made big progress with the Parity Act and enacting
that as part of the Affordable Care Act, which was bipartisanly
adopted by the Senate Finance Committee in the initial markup
of the bill. It is a chance for us to live into the possibility
of that Act to get people the services that they need.
Thank you, Mr. Chairman.
[The prepared statement of Mr. Shern follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Mr. Pitts. The Chair thanks the gentleman and now
recognizes Ms. Jensen 5 minutes for an opening statement.
STATEMENT OF NANCY JENSEN
Ms. Jensen. My name is Nancy Jensen, and I am the author of
``The Girl Who Cried Wolf,'' which tells the story of my lived
experienced as a person with mental illness and a survivor of
the terrible place called Kaufman House in Newton, Kansas.
The story of Kaufman House vividly shows why parts of this
bill destroying the funding and effectiveness of both PAIMI and
recovery programs must be removed. This bill slashes funding
for PAIMI's program and takes away their ability to combat evil
and protect the rights of people with mental illness including
the right to choose their treatment.
If this bill is law, the Kaufman House would still be
terrorizing, abusing and enslaving people with mental illness.
As a former resident, I know how terrible Kaufman House was.
They called what they were doing therapy. It was not therapy.
It was sexual and emotional abuse. The Kaufmans forced their
so-called patients to be nude and do bizarre acts, sex acts,
while they videotaped it. I was forced to be naked, to sleep on
a filthy floor and use a bucket for a toilet. I was degraded
and told I should never get married, never have a child, never
join a church, and that I would never get a job. Well, as a
proudly married mother with both faith in God and a job, I
proved Kaufman wrong.
The PAIMI program shut down this house of horrors when no
one else would or could. The PAIMI program freed my friends and
helped get us justice. I was the first former resident to tell
the State about the evil. Eleven other Kansans made reports
after me but the State did absolutely nothing.
How did PAIMI programs shut down Kaufman House when the
State adult protective services could not? Well, first, the
PAIMI Act gives protection and advocacy agencies powers and
independence to gain access in places like Kaufman House to
investigate and shut them down. Without a court order, the APS
was turned away. Second, PAIMI programs provided the P&A enough
funding so that it could properly investigate the Kaufmans, and
PAIMI freed us and got us the right treatment and then pressed
for policy changes. Third, and perhaps the most important, with
PAIMI, the victim is the client. The client is in charge. With
the APS, they serve the interests of the provider and the
State.
Long story short, thanks to PAIMI and its special powers
and funding, the Kaufman House was shut down and we obtained
the right type of treatment, and Arlan and Linda Kaufman were
found guilty of over 60 charges. The Kaufmans are in prison
today and I am here testifying. How cool is that?
This bill also takes away the PAIMI program's ability to
educate policymakers. The PAIMI program worked with me as a
survivor to change policy so future Kaufman Houses can never
happen again. Licenses are now required, guardianship laws are
fixed, and now there is an abuse and neglect unit.
PAIMI does not just help victims of abuse. This bill makes
it harder for people with mental illness to find housing,
employment and education. It prevents individuals with mental
illness from receiving the treatment they choose.
Another important lesson from Kaufman House is the need for
recovery programs like alternatives conference. You must have
recovery programs to have recovery.
Finally, I believe this bill is misnamed. The Helping
Families in Mental Crisis Act? Well, I want to respectfully
point out to the subcommittee that the focus needs to be on
helping the individual with mental illness and crisis and
through recovery. Yes, families are really important support
but the focus needs to be on the person and their recovery.
Thank you.
[The prepared statement of Ms. Jensen follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Mr. Pitts. The Chair thanks the gentlelady and now
recognizes Ms. Zdanowicz for 5 minutes for an opening
statement.
STATEMENT OF MARY ZDANOWICZ
Ms. Zdanowicz. Thank you, Mr. Chairman, members of the
subcommittee.
I have been involved in advocacy for people with severe
mental illnesses and their families for many years, and I
really have no hope that some of the things that have created
barriers to treatment would be addressed until Congressman
Murphy introduced the Helping Families in Mental Health Crisis
Act.
I too want to talk about the protection and advocacy
program, and while I think the original intent of the program
and the original practice of the program was very important, it
has lost its way, and I will share a personal experience that
is very difficult to talk about. My sister has schizophrenia.
She has been ill since she was 18 years old. She has spent most
of her adult life in state psychiatric hospitals. For the most
part she has received good medical care and they have protected
my sister, who is very vulnerable. But in 1998, the State
hospital that she was in closed. She was moved to a hospital
that had less than 500 patients, but because of the loss of
beds due to the hospital closure, the patient population grew
from 500 to 750 patients by 2007. I knew what was happening at
the hospital to some extent, and I was able to get her moved to
a facility that was safe, but a few years later I was able to
get her medical records, and I found out what was really
happening and just how bad things were, and I am still haunted
to this day by what happened to patients that didn't have a
family to protect them, and the protection and advocacy
organization was nowhere to be found.
The problem is that the bill that created protection and
advocacy was enacted in 1986. The first finding in that bill is
that patients or persons with mental illness are vulnerable to
abuse and serious injury, and so it created a federally funded
organization independent of States to monitor care of patients
in hospitals and facilities. Now, at that time there were
250,000 people in State psychiatric hospitals. Now there are
fewer than 35,000, and the protection and advocacy
organizations have changed course as a result, and not
necessarily in a good way.
I will give you an example from Massachusetts, which is the
State where I live. That organization reported spending more
than $250,000 on lobbying, federal funding on lobbying against
State measures, and more than $100,000 actually went to
professional lobbyists, but it isn't just lobbying that is the
problem. In Massachusetts, that organization got government
funding to conduct a study of community services, which to me
is very important because I have a brother with schizophrenia
who lives in a group home and I am his guardian, and I work
very closely with staff and the management of that group home
to make sure he is safe in the community. But I was appalled
when I read the report, and one of the findings was that
guardians should not be involved in protective measures that
should be used for individuals living in the community, and a
finding that GPS devices that are used for people who have a
history of wandering and getting injured are a violation of
individual rights. It is just a perversion. If you look and
compare with the Alzheimer's Association view on that, they
find it an appropriate use of electronic devices to have a
comprehensive safety program for people who need it and may be
unsafe in the community.
So I want to say that Congressman Murphy's bill really will
do what it is named, and that is, it will help families who are
in mental illness crisis.
Thank you.
[The prepared statement of Ms. Zdanowicz follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Mr. Pitts. The Chair thanks the gentlelady, and notes that
Dr. Welner still has not been able to get here. If he comes in
during the panel, we will permit him to give his testimony at
that time, but I will begin the questioning now and recognize
myself for 5 minutes for that purpose.
[The prepared statement of Mr. Welner follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Mr. Pitts. Ms. Thompson, in your experience, has the HIPAA
privacy rule been misapplied to the effect that it serves as a
barrier for helping the very people responsible for providing
care in the community?
Ms. Thompson. Absolutely.
Mr. Pitts. Could you expound on that?
Ms. Thompson. What my experience was with HIPAA was that my
family was consistently kept separate from my mother's medical
needs, health care needs, psychiatric needs. We were unable to
talk to physicians until we got guardianship at the end, which
we weren't able to get guardianship until the last 9 months of
her life because of the difficulty in gaining access to
physicians telling us what was going on. As a professional
advocate, I learned how to communicate with doctors. Most
family members don't have that knowledge. I was fortunate
enough to have gone through the training and professional
experience to be able to tell a doctor he doesn't have to say
anything to me but he has to listen to me. Most family members
don't know that that is their right to say something. And so
there is a lack of education on both sides, and the continued
hiding behind HIPAA has got to stop.
Mr. Pitts. Ms. Zdanowicz, in your opinion, how has the
legacy of deinstitutionalization of the mentally ill worked out
over the past half century?
Ms. Zdanowicz. Well, this is one of my most passionate
issues because I have seen the effect of closure of state
psychiatric hospitals, and that is why I think the IMD
exclusion is so important. I view it as discriminatory
provision because it is the only population that is precluded
from Medicaid coverage in hospitals.
A perfect example is when the hospital is closed where my
sister was and she was moved to the other hospital, and there
were not enough hospital beds left, which created this
overcrowding, which just prevented people from getting
treatment. Now, on the other hand, I do want to recognize,
Congressman Pallone, Congressman Lance, that New Jersey has
what is a gem in terms of psychiatric hospital treatment, and
that is the Greystone Psychiatric Hospital, and that is where
my sister is now and she is receiving just superior treatment.
So it can be done correctly. But if you continue to close
hospitals, there won't be enough beds, and people will end up
where they are now: in jails and prisons. I just finished a
survey of all the jails and prisons across the country, and I
can tell you, they are the new psychiatric hospitals.
Mr. Pitts. Ms. Thompson, back to you. If you could choose
one thing that the government could have done to help your
family, what would it be?
Ms. Thompson. Just one?
Mr. Pitts. Well, you can name more than one.
Ms. Thompson. It would be that my mother was protected from
herself. I come at this from so many different angles. I
understand patients' rights. I wholeheartedly believe in them.
I help fight for them. But when someone lacks the capacity,
there is no shame in lacking capacity. When someone lacks the
capacity, we need to take care of them, and that did not happen
with my mother. She fell through the cracks over and over and
over again, and if there had been more support for her, there
would have been ongoing treatment for her. When my mother went
through treatment, she would come back and everything would go
back the way it was because there was no follow-up. She came
home, and we didn't have the ability to do what we do.
I see it with families now. A family member, a son or
daughter is hospitalized for a 72-hour hold and gets discharged
home and the parents don't know how to create the right
environment to keep that person on the road to recovery. They
don't have the skills. There needs to be ongoing support. There
needs to be more IMD beds. There needs to be this ongoing
system of support for family members and for the person with
the diagnosis.
Mr. Pitts. My time is expired. The Chair recognizes the
ranking member, Mr. Pallone, 5 minutes for questions.
Mr. Pallone. Thank you, Mr. Chairman. I am trying to get
two topics in with Dr. Shern, so if I cut you off a little bit,
it is because I am trying to get to the second set of
questions.
The first relate to ACA and compliance with parity laws. As
I said, Mr. Chairman, I am pleased we are having this hearing
but I am troubled by a number of provisions in this bill, but
it is a wide-ranging effort to address some important issues.
I wanted to discuss again the Affordable Care Act and the
Mental Health Parity and Addiction Equity Act. The Mental
Health Parity can enshrine in law the principle that mental
health care is just as important as physical health care, and
then the Affordable Care Act not only extended this principal
to the individual health insurance market but also required
that all expanded Medicaid programs as well as individual and
small group health insurance plans cover mental health and
substance abuse services as part of the essential benefits
package. I hope my Republican colleagues understand that they
are voting to repeal these advancements for mental health when
they support the Ryan budget or vote to repeal the ACA.
So questions. Dr. Shern, what is your view of the
importance of health insurance coverage and mental health
parity and expanding access to treatment and improving health?
Mr. Shern. It is absolutely critically important. Because
of the development of the mental health treatment system in the
United States, we have systematically discriminated against
individuals with mental illnesses. That was largely repaired
with the parity bill and further extended into markets that the
parity bill didn't apply to by its unanimous incorporation into
the Affordable Care Act. Getting to people sooner with
effective care is critically important in terms of trying to
stem these problems. Insurance access is a major impediment for
individuals with mental health and addiction conditions is
critically important.
Mr. Pallone. And then secondly, these laws were clearly
major steps forward but effective implementation and
enforcement are essential. What more can Congress do to ensure
health insurers are fully complying with the letter and the
spirit of both the ACA and the parity law?
Mr. Shern. I think that this House bill that is under
consideration provides an excellent opportunity to provide
resources to the Department of Labor and to the Department of
Health and Human Services to assess the degree to which the
parity bill is being effectively implemented across the United
States and to provide ongoing guidance to insurers and payers
and primary consumers about what they should expect to be their
rights under this bill and the appropriate boundaries with
regard to insurance coverage. So it is a complex bill. Equity
in coverage is not something that is easily determinable. It
has a large State influence, so I think it is very important
that we systematically monitor it, and that would be a very
helpful addition to this legislation.
Mr. Pallone. All right. Thank you. Now, I want to get to
this Wall Street Journal editorial, which I think the chairman
introduced into the record. They ran an editorial that sharply
criticized SAMHSA's effort to provide services that help
individuals prevent, treat, and recover from mental health
disorders, and they called SAMHSA the vanguard of the legacy
advocacy and anti-psychiatry movement, accused the agency of
wasting taxpayer dollars on programs that do not help those
with the most serious mental illnesses. Obviously these are
very serious allegations. How would you respond to this
editorial's characterization of SAMHSA?
Mr. Shern. It is, from my perspective, almost entirely
inaccurate. If you look at the major--we talked about the
deinstitutionalization and the problems with
deinstitutionalization, and that surely was a policy that was
well intended but very poorly implemented. If you look at every
major reform since deinstitutionalization in terms of improving
services for people with mental illnesses, many of the things
we talked to you about today, SAMHSA has been the champion of
the reform. They started the Community Support program, which
is the first effort to try to build an adequate community
treatment system for people with severe mental illnesses. They
started the Child and Adolescent Support program. With
Congress's support, they implemented the Assistance with Care
Act. They have implemented acts around people with dual
disorders. We could go on and on and on.
I think one of the things that is unfair is this
characterization of SAMHSA as an entity that is anti-
psychiatry, anti-treatment, anti-medication. That is just not
true.
Mr. Pallone. The editorial also claims that very few of
SAMHSA's evidence-based programs focus on individuals with
serious mental illnesses. Can you comment on SAMHSA's work in
that area?
Mr. Shern. Our estimate is that over 80 percent of--no one
remembers that SAMHSA is an agency that addresses both mental
health and substance use issues. If you look at the mental
health portion, our estimate is about 80 percent to 85 percent
of their resources are spent on issues related to and persons
who have severe mental illnesses. So again, I just feel this is
a gross mischaracterization of the SAMHSA program.
Mr. Pallone. Thank you.
Mr. Pitts. The Chair thanks the gentleman and now
recognizes the vice chairman of the full committee, Ms.
Blackburn, for 5 minutes for questions.
Mrs. Blackburn. Thank you, Mr. Chairman. I thank each of
you who are witnesses for being here and for adding to the work
that we have done. I do want to thank Dr. Murphy for the work
he has done with our committee. I think that because of the
work he has done and concerns that we are hearing from our
constituents, especially now that we are highlighting this
issue, we have learned about the size and the scope of
untreated mental illness and exactly where it affects families
and individuals.
We have also, and Ms. Thompson, this speaks to some of
yours, we have talked about the privacy laws and the impact
that that has on public safety and also looked at federal
resources and how those are utilized, and you are certainly
adding to that discussion today and we appreciate it, and we
are pleased with the components that the new legislation would
put in place, some redirection, some refocusing, and we think
that those are good and they are appropriate.
I do have a couple of questions that I wanted to ask, and I
will be brief on these.
Ms. Thompson, I did want to come to you first. I want to
thank you for sharing your story. As we looked at HIPAA and
FERPA and the privacy issues. What I would like to hear from
you, as we look at reforms, through what you have experienced
firsthand and what you have learned through your caregiving and
your advocacy, give me maybe the top three or four things that
you would say this is what you need to change as you look at
HIPAA and FERPA reforms. Do you have that laundry list? Could
you give that to us?
Ms. Thompson. I don't know if I have a laundry list but I
can tell you that I think what is important is that when
somebody is--if somebody--I work with the developmentally
disabled population as well. It is automatic. They have a
condition before the age of 18, so there is no HIPAA violation.
The parents are clearly the guardian. They become the guardian.
They go through what is legally necessary.
Mrs. Blackburn. Been through the qualification?
Ms. Thompson. Correct. What happens with mental illness is
that oftentimes that doesn't present until after the child is
no longer a child, so at that point you are trying to shut the
barn door after the horse has left, if you will forgive the
analogy. There need to be some qualifications in place with
HIPAA that make it clear when somebody is not able to make
decisions when there is a question as to their safety or the
safety of others, that relinquishes professionals, that doesn't
allow them to keep their hands tied.
Mrs. Blackburn. OK. So almost like a revisit of a power of
attorney?
Ms. Thompson. Yes. Right now you can try to get the
individual to sign off but if somebody doesn't think they are
ill, they are not going to sign off permission. That doesn't
mean they are not ill and not in need of help.
Mrs. Blackburn. So you would encourage us to have some type
of allowance or avenue that that oversight you could negotiate?
Ms. Thompson. Like a waiver, and maybe that--I don't know.
As I said before, I am not a legislator. I don't know. Maybe
having--if the physician deems it necessary or maybe getting
two physicians to deem it necessary that HIPAA can be broken in
this instance. It can't just be because somebody is going to
commit a crime or they are going to kill themselves. They need
to get help before that.
Mrs. Blackburn. OK. Ms. Zdanowicz, I can tell you want to
weigh in on this. I see you nodding your head.
Ms. Zdanowicz. I have to agree completely. I actually would
say the same thing. I was unable to get information about
treatment for my brother and sister until I got guardianship,
and I paid $5,000 to get guardianship for my sister, who was in
agreement. She did not object to it. But I had that in order to
get information, but even with that, for example, when I know
my brother is in a hospital, a particular hospital, I have been
told he was transferred there, and I call and they say we can't
tell you if he's here, and then I will fax my guardianship
papers and they'll still say HIPAA prevents us from talking
with you, and then I learn later that they have changed his
medication in a way that I already know is not helpful and
there is nothing I can do about it, it is too late.
People don't understand HIPAA, and I often tell families,
if you are told that they cannot tell you anything about your
family member, you are still free to tell them what they need
to know about your family member. It is a terrible obstacle for
families to help, and I totally support the revisions to that
portion of the bill.
Mrs. Blackburn. Thank you. Yield back.
Mr. Pitts. The Chair thanks the gentlelady and now
recognizes the ranking member of the full committee, Mr.
Waxman, 5 minutes for questions.
Mr. Waxman. Thank you, Mr. Chairman. I want to apologize to
the panel because there is another subcommittee meeting at the
same time, and I have been required to go back and forth.
Ms. Jensen, I want to start by thanking you for being here
today and telling us your story. It is a deeply personal one,
and I was struck by the utter failure and inability of
authorities in your State to bring an end to the terrible
abuses of people with mental illness, including yourself, at
the Kaufman House, that is, until the P&A became involved. Can
you elaborate on whether or not Kansas was an outlier and not
adequately addressing complaints about the Kaufman House prior
to the P&A's involvement? Do you think it is unique?
Ms. Jensen. All I can say is that there were 12 complaints
to the Adult Protective Services, and he even sued Adult
Protective Services, and so they quit coming to the door. And
so I believe that I know for a fact if it wasn't for PAIMI,
Kaufman House would still be going on.
Mr. Waxman. We have heard from witnesses today that P&As
lobby, and in fact, in the testimony, you worked with the P&A
to change laws that would prevent future Kaufman Houses through
licensure requirements, guardianship laws and the establishment
of an abuse and neglect unit. Can you clarify whether the
federal funding was used for these activities and any other
lobbying activities? Do you know?
Ms. Jensen. No, there was no federal funding. I and my
friend, we just never wanted it to happen again, so we were
volunteers. We did it ourselves, and it was educating us on the
issue but there was no financial spending of federal funds to
get these laws passed.
Mr. Waxman. Proponents of the PAIMI proposals in H.R. 3717
claim these provisions will return the program to its roots but
it seems to me that an 85 percent reduction in federal funding
would do much more than that. How would a funding reduction of
this magnitude impact the ability of the P&A in Kansas and P&As
around the country to protect the rights of people with mental
illness?
Ms. Jensen. I am so scared that if you take PAIMI away, and
that is what would happen, there wouldn't be any protection for
us if we were being abused, neglected or exploited. There
wouldn't be anyone coming in and taking us out of that
situation in order to talk to us and investigate the situation,
and I just ask you not to do that.
Mr. Waxman. Well, your testimony is very persuasive and I
think quite valuable to us to hear that point of view.
I want to ask Ms. Thompson and Dr. Shern, I am pleased that
my colleagues and I have some points of bipartisan agreement on
issues before us. We all believe that mental health care is an
essential part of our health care system. We agree that we need
to work to end the stigma that surrounds seeking treatment, and
we agree that we need to invest in community-based approaches
for care so that individuals who need help are able to get it.
I think everybody here on the panel would agree with these
goals as well. But I also believe that witnesses invited by
both Republicans and Democrats today agree that expanding
access to health insurance and improving health coverage of
mental health services are critical.
Ms. Thompson, as a general matter, do you think individuals
who have health insurance have a better chance of getting into
treatment for their mental health conditions?
Ms. Thompson. I am sorry. Can you----
Mr. Waxman. If you have health insurance, don't you have--
--
Ms. Thompson. Oh, absolutely.
Ms. Waxman. And do you think including mental health
coverage as an essential health benefit and requiring it be
covered at parity with physical health were important steps
forward?
Ms. Thompson. Yes.
Mr. Waxman. And Dr. Shern, do you agree with that?
Mr. Shern. Absolutely.
Mr. Waxman. I think, Mr. Chairman, we could learn a lot
from these witnesses. There is a lot more to the ACA than we
can fit into 30-second attack ads. But it advances a number of
essential priorities that both sides agree on, and I hope we
can agree that it is here to stay, that we should build off of
these things that we agree on in the law rather than constantly
focus on repealing or undermining it.
I see my time is over and I will yield back the balance.
Mr. Pitts. The Chair thanks the gentleman and now
recognizes the vice chairman of the subcommittee, Dr. Burgess,
5 minutes for questions.
Ms. Zdanowicz. Mr. Chairman, if I may?
Mr. Pitts. Go ahead.
Ms. Zdanowicz. I did want to just elaborate on one point
that was made, and that is about the money that is used, the
federal funding to lobby, and that is documented. You can find
that in IRS reports and State lobbying reports that in fact
federal funding is being used to lobby, and professionally, I
have seen it done. I have been up against lawyers of protection
and advocacy organizations lobbying in State capitals against
State legislation. So it does happen, and it is not the
original mission, and it takes away from what they are supposed
to be doing.
Mr. Waxman. And it is in violation of the rules that say
that they cannot use that money for lobbying.
Ms. Zdanowicz. And so I think that in order for them to be
able to do what they are supposed to do, which is monitor like
they did when you were being abused, I think that would be a
significant improvement. So thank you.
Mr. Pitts. The Chair thanks the gentlelady and now
recognizes Dr. Burgess 5 minutes for questions.
Mr. Burgess. And please let the record reflect the
generosity and time that I gave to the ranking member of the
subcommittee. We don't often have areas of commonality, so I
thought that was important to have that follow-up.
The majority of my questions were for Dr. Welner. One of my
big objections to these types of hearings is we never have an
M.D. Thank you for calling an M.D. Unfortunately, because of
travel issues, he has not been able to join us, so I am going
to submit my questions to Dr. Welner for the record.
Dr. Shern, your discussion with Ranking Member Pallone
brought some things to mind, and really, this is more of just
reminding people of the process, yes, the budget process, the
legislative process, process in the agencies. Go back just for
a little bit to the Mental Health Parity Act, and I don't know
how many people now remember, the Mental Health Parity Act,
introduced by one of our colleagues, Patrick Kennedy, indeed,
we had hearings in this subcommittee many, many years ago. The
Mental Health Parity Act was used as the vehicle to pass the
Troubled Asset Relief Program, two absolutely unrelated
proposals. Now, I just want to be clear. I actually opposed
both of them, so that no vote actually did double service that
day, but to think that we passed something of the magnitude of
the Mental Health Parity Act and its effect upon caregivers and
third-party payers as a vehicle to bail out banks, I am still
bothered by that nexus. But nevertheless, that is what
happened. The Mental Health Parity Act had not actually been
scored, to the best of my recollection, by the Congressional
Budget Office. I think it estimated some significant budgetary
outlays over a 10-year period but be that as it may, now the
Affordable Care Act actually passed sometime after that, about
a year and a half after that, and was signed by the President
in March of 2010. The part of the Affordable Care Act dealing
with essential health benefits was actually subject to a rule.
The rule was supposed to be published and concluded in August
of 2012. I don't want to seem cynical here but the actual rule
was delayed until a couple days after Election Day in 2012. I
don't know why the Administration would see an advantage to
doing that but apparently there was. And if you will recall,
much of the difficulty that subsequently happened to the
Affordable Care Act was because of that delay. The governors
were required to disclose whether or not they would participate
in state exchanges on November 18th. The essential health
benefit rule was published on November 8th. So that gave them
precious little time to actually evaluate, is this a good idea
or a bad idea for my State. To be fair, they were given two
extensions but finally by January 2013 the governors had to
declare. Twenty-six States said no, thank you, we are not doing
an exchange. Four States said well, maybe we will do one but we
will let the Federal Government set it up. So the fact that so
many States were not doing their own exchanges and that task
then fell to the Federal Government and clearly the Center for
Consumer Information and Insurance Oversight was not up to the
task of standing up a massive new information technology
project in the 8 months that they had available, and I think we
all know the story on that.
But here is the issue. OK, Mr. Pallone is right. The Mental
Health Parity Act and the ACA, the nexus of those two things
does affect stuff. None of that--because the way the
Congressional Budget Office works, we only get information
about bills before we pass them. Sometimes we don't even get
that. But we only get that budgetary information as the
legislation is coming through the process. We don't get a
rescore by the Congressional Budget Office when the rulemaking
happens. So if you take the combination of the Affordable Care
Act and the essential health benefits, when the Mental Health
Parity Act was passed it said we are not requiring you, Mr.
Private Insurance Company or Mrs. Private Insurance Company, to
offer mental health benefits, but if you do, they need to be on
a par with other medical services that you offer. So I am
concerned that there were companies that were going to drop out
of the mental health business. A year later, we had the
Affordable Care Act passed and it says this is part of your
essential benefit package.
I am from Texas. I will never attribute to coincidence that
that can be adequately explained by conspiracy, but the Mental
Health Parity Act was passed in 2008 and the rule was not
published until last November, and I can't help but wonder if
the reason the rule was not made public until all of the
Affordable Care Act stuff was in place was because this is
going to blow the cost way beyond anything that anyone
projected for the Mental Health Parity Act or for the ACA. I
don't know the answer to that question. I think it is one that
we are going to have to ask our Congressional budget writers to
help us with but it just underscores the difficulty of making
budgetary decisions on these types of issues. There are always
things in the future that will affect them.
Thank you, Mr. Chairman. I have rambled enough, and I will
yield back.
Mr. Pitts. The Chair thanks the gentleman and now
recognizes the gentleman from Texas, Mr. Green, 5 minutes for
questions.
Mr. Green. Thank you, Mr. Chairman, and Dr. Shern, I think
we are in agreement that our country has a long way to go to
improve mental health systems. I am also from Texas but in an
earlier life I actually did probate work, and one of my judges,
who was a friend, appointed me to do mental health work, do the
probable cause hearings and the commitment hearings, and it
opened my eyes to the Texas mental health code, and actually as
a State senator, we were able to change some of it.
I appreciate Dr. Murphy's leadership for many years on this
issue. I have some concern about part of the legislation, the
Medicaid IMD exemption. My concern is cost shifting from the
State if the State does it to the Federal Government.
But I want to get to the follow-up on my colleague from
north Texas. Dr. Shern, the Affordable Care Act included
demonstration in 11 States to test whether undoing the IMD
exemption for emergency psychiatric care and letting federal
funds pay for the care in IMDs that States would concurrently
provide would improve service to the population. It is my
understanding we don't yet have enough information to know
whether this demonstration is successful. My question is, it
seems to me that before we move ahead and spend billions to
supplant the State funds, we ought to see if this demonstration
yields any positive results. Can you update us on any of those
demonstration projects?
Mr. Shern. I am not aware that evaluations have been
completed. Our position would be quite consonant with yours.
When that provision was discussed and been made part of the
Affordable Care Act, there was a concern that looking at only
one element in a system of care just really wasn't the
appropriate way to think about how to build an effective
community care system. And so we maintained and the law was
enacted that this had to be evaluated as part of a system of
care initiative. Our recommendation is that there be no changes
to the IMD law until the results of that evaluation are
complete.
Mr. Green. OK. The Congressional Budget Office, they
haven't officially scored the provision. My understanding is,
it is quite expensive, tens of billions possibly. If we had
tens of billions of dollars to spend on improving the mental
health system in the United States, how would we direct it and
where should we really be looking to invest that money to see
the greatest improvements?
Mr. Shern. Well, I think that we have heard a lot this
morning about the importance of assertive engagement-oriented
outreach. Ms. Thompson talked about how important some of that
was for her mom and how it would have been helpful had that
continued when her mom came home. The committee heard in
testimony from Dr. Arthur Evans, who runs the Philadelphia
mental health system, about how critically important that there
be funds available for crisis alternative services, for peer
engagement and outreach services. We know a lot about what we
can and should do, and I would much prefer to see those funds
spent on fully developing a continuum of care in communities
with assertive outreach and engagement.
Mr. Green. Well, I am familiar at least in Houston, Harris
County, with some of the substantial reforms that have been
made in the last 20 years, for example, our Harris County
Hospital District. When I would first go see a client or a
patient, it was literally dismal. It looked like a holding cell
in the hospital. But they have created a diversion now to where
you actually have committed to mental health treatment, and it
is a partnership between the University of Texas where we have
a psychiatric hospital in Houston, but it is doing better but
we have less psychiatric beds in Houston, Harris County than we
did in the 1980s. So that is our big concern.
I am pleased with Dr. Murphy's bill. It includes a
provision to extend the liability for doctors who volunteer in
behavioral health clinics. He and I have had legislation for a
number of years. It has passed this committee and somehow the
Senate doesn't do it. It would expand for our FQHCs and not
just behavioral mental health clinics but our FQHCs where
volunteer physicians could go in and be under the Federal Torts
Claims Act, and that makes so much sense. While it is a good
step forward in increasing the mental health workforce, much
needs to be done to develop professionals.
Mr. Chairman, both on our Health Subcommittee and I know on
our Oversight Committee Dr. Murphy is doing, there are a lot of
examples of things happening all over the country based on
local community success, and I think this panel shows that,
that maybe we should, since we do have the Affordable Care Act
and mental health parity issues, then maybe we ought to look at
some of those examples from around the country and see what we
can do to make sure we get the best bang for our federal dollar
to help our States and the local communities, because, again,
oftentimes it is our hospital districts that are providing some
of that care.
So I appreciate it, and I yield back my time.
Mr. Pitts. The Chair thanks the gentleman and now
recognizes the gentleman from Pennsylvania, Dr. Murphy, 5
minutes for questions.
Mr. Murphy. Thank you. I want to thank all the panel for
being here. I really appreciate your time.
A quick question to start off with. I am just going to ask
each one of you if you have read the bill. Ms. Thompson? It is
a yes or no.
Ms. Thompson. Not the whole bill.
Mr. Murphy. All right. Dr. Shern?
Mr. Shern. Not the entire bill.
Mr. Murphy. Ms. Jensen?
Ms. Jensen. I didn't hear the question.
Mr. Murphy. Have you read the bill we are talking about?
Ms. Jensen. Yes, I read the bill.
Mr. Murphy. The whole thing?
Ms. Jensen. Yes, the whole thing.
Mr. Murphy. Thank you. Ms. Zdanowicz?
Ms. Zdanowicz. And yes, I have read the whole thing.
Mr. Murphy. Thank you. Ms. Jensen, did anybody else in your
testimony today advise you on things to say?
Ms. Jensen. Of course not.
Mr. Murphy. So I am not sure where you got this statement
from, that it would make it harder to get housing and
education. If there is a point in that bill where you feel that
is, will you make sure you let me know? Because I want to fix
that. Would you let me know?
Ms. Jensen. I don't understand what you are saying, sir.
Mr. Murphy. You had said in your statements that the bill
would make it harder to get housing and education. If there is
a place in the bill where that occurs, would you let me know,
because I want to----
Ms. Jensen. If you take PAIMI away, we have a hard time
getting help with housing and education.
Mr. Murphy. I don't agree, but thank you.
Dr. Shern, I am just not clear. Are you a clinician that
treats patients?
Mr. Shern. No, I am a research psychologist.
Mr. Murphy. OK. Thank you. You said SAMHSA does not support
programs that are anti-treatment. Are you familiar with the
Alternatives Conference?
Mr. Shern. I am.
Mr. Murphy. Are you aware that Alternatives is short for
Alternatives to Treatment?
Mr. Shern. My interpretation of Alternatives, it is not
alternatives to treatment, it is alternatives available for
people to make choices about how to best engineer their
recovery.
Mr. Murphy. Do you think everybody is capable of making
that choice?
Mr. Shern. I think everybody is capable of understanding
what is important to them.
Mr. Murphy. Ms. Thompson referred to something called
anosognosia. Do you know what that is?
Mr. Shern. I have heard it described, yes.
Mr. Murphy. OK. I am disappointed you don't know what it
is. It is critically important, so I have to go into a little
lesson here. If a person has a stroke on the right side of
their brain, and on the left side, their arm doesn't work, a
characteristic of that is if you say to this person try and
move your left arm and they don't and you say I think you are
having a stroke, you need to go to the hospital, that person
may say it is no big deal, I don't know what that is all about,
that is anosognosia.
About 40 to 50 percent of people with severe mental
illness, schizophrenia, if shown a videotape of them
hallucinating, delusional, they don't know who they are, they
think they are the angel Gabriel, Jesus, whatever else, and if
you say do think that is OK, they will say sounds OK to me, I
don't understand the problem.
What Ms. Thompson is referring to for those people who are
not capable of making decisions on their own to have someone
else assist them so that they have a right to get better. Would
you agree that such persons may need some assistance that they
are not capable of making on their own?
Mr. Shern. I think the way that you specifically have
characterized the situation, people would meet the criteria for
not being competent and----
Mr. Murphy. Good. We are in agreement there. And do you
think in the Alternatives Conference, which spends about
$600,000 a year of taxpayers' money, do you think we should be
paying for conferences that have things called unleash the
beast: primal movement workshop, how to make collages, dancing,
interpretive yoga or how to stop taking your medication? Do you
think taxpayers should pay for that?
Mr. Shern. I think it is very important that we have an
open----
Mr. Murphy. I am asking, do you think taxpayers should pay
for those items when we are so short on funds? Do you think we
should be paying for that for people who have severe mental
illness?
Mr. Shern. I think that it is very important that we have
an open forum to discuss the various----
Mr. Murphy. I appreciate that. I didn't ask you about an
open forum. So I am going to take that as a yes and you are
afraid to say yes.
Do you know in SAMHSA's--no, it is true. Come on. I want to
have an open discussion. In SAMHSA's documents that describe
their strategic plan, it is about 40,000 words, how many times
does it mention the word ``schizophrenia''?
Mr. Shern. You know, I have not had an opportunity to count
them.
Mr. Murphy. Well, it is easy to count because the answer is
zero. Do you know how many times it mentions the word
``bipolar''? Zero. So when you say SAMHSA is focused on severe
mental illness, my problem is, it is not, and when I had the
leader of SAMHSA in my office and I said would you change
anything, she said no.
So what I see here is, I think SAMHSA plays a very
important role. I want to see it keep on doing that. But I want
to make sure we get back to evidence-based care, and I am
assuming you would be OK with that.
Mr. Shern. Absolutely.
Mr. Murphy. That if a program shows that it can work, make
it work.
Mr. Shern. Absolutely.
Mr. Murphy. And let us do that, and why I am concerned here
is that throughout the Federal Government, we have got money in
the Department of Defense, Veterans Affairs, Education, HHS,
who knows where else, and we have to make sure we have got
programs that work, and the ones that work, expand them, and if
they don't, eliminate them, and if they are redundant, merge
them, and that is what I want to have happen with this bill.
On the parity issue, real quick, I just want to say that
there is parity for people who have private insurance in the
Affordable Care Act. There is not parity with Medicaid, so if
you have more than 16 beds, you are not going to get it, and if
you see two doctors on the same day, you are not going to get
it.
The last question I want to address to Ms. Zdanowicz. Dr.
Shern called the Journal editorial a gross mischaracterization
of SAMHSA for leading an anti-psychiatry movement. Do you have
any comments on that with regard to SAMHSA and providing money
or grants to groups that fight treatment or discourage
treatment?
Ms. Zdanowicz. Yes, and in fact, I have read many of the
State applications for grants from SAMHSA, CMHS, and when you
read those, you find very little reference to the most severely
ill. Much of it is about, this is how we are going to get
people out of State psychiatric hospitals. It is about how we
are going to--if we just offer people what they want and make
sure that we are really nice to them, that they are going to be
just fine and it is going to settle their symptoms. But the
question is, well, what if the person wants is a semiautomatic
machine gun to shoot you because they think that you are the
devil? Well, then what do you do? Well, then you call the
police and you get them into jail, and if there was ever a form
of coercion, that is it.
Mr. Murphy. Thank you. I have to yield back.
Mr. Pitts. The Chair thanks the gentleman and now
recognizes the gentlelady from California, Ms. Capps, 5 minutes
for questions.
Mrs. Capps. Thank you, Mr. Chairman, and I would like to
thank all of our panelists for your testimony today. I want to
single you out, Ms. Jensen, because yours was so personal, and
I appreciate that you are willing to tell your story.
Dr. Shern, mental health is an important issue that members
of this committee on both sides of the aisle have a shared
interest in addressing. I worked in our community in public
schools before coming to Congress as a public health nurse and
so I have had experience with this topic, and I am really
pleased that today it is being discussed.
We heard from the testimony that there are some provisions
in this bill that have widespread support and others that are
perhaps problematic. I know that other members of the committee
have also expressed interest in the topic and introduced
legislation on mental health, and I hope that moving forward we
can have an open dialog--the chairman just mentioned that--
about all of the proposals and ideas.
That being said, Dr. Shern, are there any provisions not
included in H.R. 3717 that you feel are important to the
improving mental health system?
Mr. Shern. Well, as we have said on a number of occasions,
I think that understanding that a full continuum of engagement-
oriented and assertive outreach services are critically
important for effective services for people with severe mental
illnesses. Additionally, and I think that Dr. Murphy mentioned
this in his remarks or Mr. Pitts, we are continuing to learn
about the importance of early identification for people who are
going to develop disorders that have psychotic features, and I
think it is critically important that we do a much better job
at early identification of people who are going to have the
more severe illnesses, and we are developing a reasonable
evidence base about the things that are helpful to them because
that can stem disability. I am also very excited about the peer
movement, the use of persons who themselves are in recovery to
help with these engagements and follow a long process, and also
with appropriate supervision to provide the kind of extension
of the mental health workforce that is going to be required.
Mrs. Capps. Yes. Well, that is the point I wanted to pick
up on because Dr. Welner in his written testimony that I read,
he noted the importance of having enough mental health
professionals. Maybe that is a whole other hearing,
particularly it seems to be a hole in this bill and one that I
think we should be addressing with more specificity.
Dr. Shern, one of the key principles both sides of the
aisle agree on is that we need to do everything possible to
encourage individuals, and you talked about outreach,
struggling with mental illness to seek treatment. That is
actually part of the stigma, recognition and the clear sort of
lack of understanding that we have about our brain and issues
that affect it. Treatment does prove to be very helpful, as we
heard today, and is more successful I think than some of the
public seems to recognize, and early detection, just as you
said, and regular treatment are so essential for preventing
those rare and tragic cases where individuals become violent
toward themselves or others, and we know people with mental
illness are actually more likely to be victims, so that is a
piece of the story that needs to be clearly said as well.
But the stigma demands, I think, and we should be desirous
of ways to address the stigma. Privacy concerns are also
intimately related. That is why I am concerned about the
changes to our health privacy law that this bill proposes. It
creates entire new standards for individuals who have what the
bill loosely defines as serious mental illness, and that is a
loose definition, unfortunately, and I know these are difficult
areas to find the right path but that is something we really
need to get to.
Dr. Shern, first, can you help us clear up a key point of
fact? Does HIPAA always require patients to give their
permission before information is shared or do providers have
flexibility if there is a threat or if they believe the patient
lacks capacity?
Mr. Shern. It is my understanding that there is
flexibility. You know, I was thinking also the Virginia Tech
shooting, and when people looked at FERPA and HIPAA then, it
was clear that there was a lot of misunderstanding about the
bill and in emergency situations that can be found.
Mrs. Capps. Yes.
Mr. Shern. So part of the thing I think we need, and I
think Ms. Thompson would agree, is just better public education
about what those laws actually mean.
Mrs. Capps. I am glad you put that on the record.
What impact will the changes proposed in the bill have on
people's willingness? Is that a concern to you, people's
willingness to seek treatment for mental illness?
Mr. Shern. It is a concern of mine, a concern of my
organization, given the coercive nature of some of the
outpatient treatment programs.
Mrs. Capps. Thank you. I yield back.
Mr. Pitts. The Chair thanks the gentlelady and now
recognizes the gentleman from New Jersey, Mr. Lance, 5 minutes
for questions.
Mr. Lance. Good morning, and thank you, Mr. Chairman, and
thank you for your leadership on this issue, and thanks to Dr.
Murphy as well for his leadership.
Earlier this week, a bill on which I had worked with
Congresswoman Matsui of this committee, the Excellence in
Mental Health Act, was included in a larger piece of
legislation, and I am pleased that the President has signed
that into law and I certainly want to work with all members of
this subcommittee and the full committee as we move forward on
this challenging issue.
Ms. Zdanowicz, as I understand it, your sister spent quite
a few years in New Jersey facilities including the now-closed
Hagedorn Psychiatric Hospital in Hunterdon County. I grew up in
Glen Gardner where that facility was located. Before it was
related to psychiatric concerns, it was related to tubercular
concerns.
It is clear from your testimony that many mental health
facilities in this country are currently unable to meet the
needs of their communities. In your judgment, would passage of
legislation in this regard help in States across the country
including States like New Jersey?
Ms. Zdanowicz. Absolutely, and the closing of Hagedorn
Hospital was a travesty. That is the hospital I mentioned that
was a safe hospital that she was transferred to. She got
excellent care there. And it was closed. And she then moved to
Greystone which, as I mentioned before, is a gem. It is a
wonderful hospital. But as a result of the closure of Hagedorn,
it is virtually impossible to get anyone into a State
psychiatric hospital now, and in fact, the State has
implemented what I will call a gatekeeping process that
prevents people--when a psychiatrist says this person needs to
be in a psychiatric hospital because they need more than two
weeks of treatment, they can be shut down by a nurse who is
reviewing the process just because the State is trying to keep
the population down.
Mr. Lance. Before your sister was at Hagedorn, what was the
State hospital before that where she was?
Ms. Zdanowicz. That was Ancora in south Jersey.
Mr. Lance. In southern New Jersey, yes.
Ms. Zdanowicz. And it was a very bucolic setting. It was a
very nice hospital when she first went there. There were less
than 500 patients, and the care was very good until because of
the closure of the previous hospital the population grew to 750
and it was truly bedlam because the hospital, the staff were
not able to handle it and that was when I was able because I
had the resources to get her moved to a safer hospital. But it
wasn't until the Department of Justice came in at the request
of the State and investigated it, protection and advocacy was
nowhere to be found, and in fact, I called them at one point,
but that was not on their radar screen. They were more
concerned with other issues like legislation for AOT and
fighting that.
Mr. Lance. Thank you. Let me say that I was honored as a
child to know Garrett Hagedorn, who was a State senator from
Bergen County, and I had the privilege of being the minority
leader in the State senate before I came here, and I have
worked on these issues and hope to be able to continue to work
on these issues here in Washington, and thank you for being
with us today.
Let me say that there are, Mr. Chairman, community mental
health facilities in the district I represent such as the
Richard Hall Community Health Center in Bridgewater, Township,
in Somerset County, and I hope that these fine efforts can
continue and that we can work in a bipartisan capacity on this
very important issue and we are reminded yet again so
tragically of the importance of this issue based on what
happened at Fort Hood yesterday.
Mr. Chairman, I yield back the balance of my time.
Mr. Murphy. Would the gentleman yield?
Mr. Lance. I certainly would.
Mr. Murphy. I just want to point out, there are
misunderstandings in the HIPAA law, and Dr. Shern, you have
never been involved in a case and you shouldn't already have an
opinion on it.
This bill does not undo HIPAA laws. It clarifies them, and
we want to work on language. I have been talking with
Representative DeGette on this too. We want to make it so that
all those things that are also in the regulations that go along
with the law are clarified. It doesn't change anything, but
there are a lot of misunderstandings. Clinicians misunderstand
this all the time, so we want to make sure work to clarify
that, but it doesn't change the law. Thank you.
Mr. Pitts. The Chair thanks the gentleman and now
recognizes the gentlelady from Virgin Islands, Dr. Christensen,
for 5 minutes for questions.
Mrs. Christensen. Thank you, Mr. Chairman. I want to ask
some questions to Dr. Shern about the bill and its impact on
SAMHSA because the bill makes some significant changes to the
way the Federal Government's mental health investment is
structured within the Department of Health and Human Services,
particularly in Substance Abuse and Mental Health Services
Administration. I want to make sure that I understand the
impact these changes could have, particularly to the Community
Mental Health Services Block Grant and programs of regional and
national significance.
Dr. Shern, starting first with the mental health block
grant, how would H.R. 3717 impact this program?
Mr. Shern. Well, it is my understanding that the block
grant would be moved to the Assistant Secretary's office and
would have a different type of oversight than it currently has
now, providing less flexibility to States, for example, in
terms of how those funds are used.
Mrs. Christensen. So do you support provisions in this bill
that would condition States' receipt of block grant funding on
newly established federal involuntary patient or outpatient
treatment standards and specific criteria for outpatient
treatment?
Mr. Shern. No, we wouldn't support that.
Mr. Murphy. Could the gentlelady ask him to clarify what
that means because I am not sure.
Mrs. Christensen. What do you mean? I asked if he would
support the provisions that would condition the receipt of
block grants on newly established federal involuntary inpatient
or outpatient standards, and he said no, he would not.
Mr. Murphy. But I am not sure he read or understood the
section there. It would simply say that States--and I
appreciate the----
Mrs. Christensen. Is this not on my time?
Mr. Murphy. I am sorry, ma'am. I was asking to yield. I was
just trying to clarify. Thank you.
Mrs. Christensen. If I have time, I will yield at the end.
As I am sure you are aware, SAMHSA has general authorities
to conduct programs of regional and national significance in
mental health and substance abuse prevention and substance
abuse treatment. I understand funding through these authorities
accounts for approximately 35 percent of SAMHSA's mental health
budget and 25 percent of substance abuse spending. Title XI of
H.R. 3717 would terminate any program by the end of the fiscal
year that is not explicitly authorized or required by statute
shall be terminated. So how will this impact SAMHSA's ability
to continue initiatives pursuant to PRNS authorities like the
Minority Fellowship program and National Suicide Prevention
Hotline?
Mr. Shern. It is my understanding that through the
appropriation process, Congress can direct and influence
SAMHSA's agenda. So in many ways, those kinds of relationships
between the legislative and executive branch are already in
place. The programs of regional and national significance are
extremely important. Most of the innovative processes,
particularly around systems of care issues and many of the
things we are talking about today, have come through that
program. So anything that would further constrain that, we
would oppose.
Mrs. Christensen. And in your testimony, you convey support
for an initiative to improve interagency coordination of mental
health and substance abuse programs within the Department but
you seem to have some reservations about the way H.R. 3717
approaches coordination of HHS programs in mental health
through the establishment of that new Secretary position. Could
you elaborate on the reservations you might have about that?
Mr. Shern. Well, our sense is that the Administrator for
SAMHSA is a direct report to the Secretary of Health and Human
Services, and so in some sense, interposing another layer of
government between SAMHSA and the Secretary doesn't seem to us
to be particularly helpful. Additionally, we believe, and I
think this was mentioned earlier in testimony today, that it is
a lot more than HHS that is involved in mental health care.
Housing is involved, Justice is involved, Labor is involved, et
cetera, et cetera, and we would concur with Drs. Richard Frank
and Sherry Gleed in their analysis of the mental health system
in this country saying that coordination needs to occur
literally at the White House level because it is those
interdepartmental issues which are important. Additionally, I
think since President Bush's commission and its findings, there
has been increasingly interdepartmental cooperation without
imposing any additional structural changes to the government.
Mrs. Christensen. Is there anything else you would like to
add about any other areas the bill could negatively impact
SAMHSA?
Mr. Shern. Well, I think that sort of overbureaucratizing
and overregulating and trying to more narrowly focus the agenda
of SAMHSA around a particular set of concerns or issues which,
generally, I think, are well represented already in their
portfolio will not be helpful. Certainly, as in any human
endeavor or any area of government, there are ways that things
can be improved. I think that the organization has been
mischaracterized in editorials and publicity surrounding that
and that anything that can further those kinds of issues will
be harmful to the people of this country and their mental
health.
Mrs. Christensen. Thank you. I yield back my time.
Mr. Pitts. The Chair thanks the gentlelady and now
recognizes the gentleman from Louisiana, Dr. Cassidy, 5 minutes
for questions.
Mr. Cassidy. I yield to Dr. Murphy.
Mr. Murphy. I thank the gentleman.
Dr. Shern, you already mentioned you didn't read the bill
so is there a specific place in this bill that you can make
reference to where you have these concerns about the Secretary
of Mental Health and what that person will do to limit care? Is
there some specific page or paragraph you can reference to
clarify your conclusions?
Mr. Shern. I am sorry, Dr. Murphy. I am not understanding
the question.
Mr. Murphy. Well, you made a statement to the gentlelady
that this person who would be the Secretary of Mental Health
would over bureaucratize and complicate some of these issues.
Is there a specific place in the bill you can tell me where it
says that? I need a specific. I don't need concepts or
philosophy. Because what we are trying to do at this hearing is
work to improve the bill. So if you think there is something in
there, it is important this committee has accurate information
and not impressions. Is there something in the bill? If you
don't, you can get back to me on that. That is OK.
Mr. Shern. The question I was responding to had to do with
conditioning the receipt of block grant funds based on States
having effective assisted outpatient treatment, and it is my
understanding, and correct me if I am wrong, that that is in
fact a provision of the bill.
Mr. Murphy. There is a provision of the bill. That is not
the issue with the Secretary of Mental Health.
Mr. Shern. That wasn't the question, though.
Mr. Murphy. Well, part of it. You said it would over
bureaucratize. The person who now handles SAMHSA, do you know
what her degree is in, what her background is?
Mr. Shern. She is an attorney.
Mr. Murphy. Exactly. Haven't we done enough with treating
people with mental illness as legal cases? We have closed our
hospitals and filled our prisons. We close our treatment
centers. We have not given adequate funding to community mental
health centers and we have replaced the hospital bed with a
flophouse or a blanket over some steam grate. That is wrong. I
think it is immoral. That puts us in a third-world category.
Mr. Shern. I agree with you completely. I think it is one
thing----
Mr. Murphy. I want for the record--yes, there is a lot to
do. A person's background should meet their role. Now, I
respect that you are here, but also, it is important to
understand, you don't treat patients. You have never been
involved in a patient case. You have never been involved in a
HIPAA discussion. You haven't, and that is important. You are
here as a citizen. But I want to make it very----
Mr. Shern. I am here as a research psychologist.
Mr. Murphy. I understand, sir, but you haven't read the
bill, OK? Sir, along these lines, let me clarify for the
committee, the Federal Government spends $125 billion a year
across many agencies. The Department of Defense has spent $100
million and the group just said that the money they spent on
resilience programs and other things doesn't work. DOD has to
go back and say what did we do wrong. Well, we found out that
some of the things they are doing are in clearly good programs
with regard to evidence-based programs, and some of it is not,
and they need to make sure people are following the program.
The VA spends a lot of money in mental health but
unfortunately, a study said that about 20 percent of the time
when someone goes into a VA hospital for mental health services
for PTSD, they get appropriate care. The rest of the time they
don't. That is wrong. Judiciary spends a heck of a lot of money
and in many States on jails. That is wrong. We should be
treating these people.
We have had many witnesses before this committee that do
that. The purpose of the Secretary of Mental Health--and I
think you are demeaning the quality of this. I don't want
someone who is dealing with 60 million Americans that one out
of five or one of four people who deal with it in life to be
some back bench low-level person. I want this person to have
some power and mojo. I want this person to be a clinician of an
M.D., Ph.D. or D.O. level. I want this person to be one who has
access behind their title, Assistant Secretary of Mental
Health, to be able to walk into the office of Judiciary,
Defense, the VA, Education, HHS and say we want your
information, we need to know if your programs work or don't
work or if they are redundant. We have got to make this system
work.
Sir, for the last 20 years that SAMHSA has been around, it
has gotten worse. Now, SAMHSA has done a lot of great things,
and I applaud them for that, and we want to keep them going. I
am not interested in getting rid of them. I am interested in
beefing them up. But I am also saying we need evidence-based
programs around this country.
There is a lot of misinformation being thrown out today, so
I am frustrated, but I also know, you know what? That is the
nature of the mental health community. For the first time since
Kennedy was President, for the first time in the last 50 years
we have an opportunity in this Congress to say we need to
overhaul this system. There have been some great programs that
have come through. I applaud Congressman Kennedy and Senator
Wellstone. Some of those things have been marvelous. But it has
been piecemeal, and I want us to really approach this in a
comprehensive way but sometimes in the mental health community,
we are so used to dealing with dysfunction in ourselves, we
don't understand when we have an opportunity.
So here is what I am recommending. When you are given a
comment and you haven't read the bill, say I haven't read the
bill, OK? And with regard to this, what we want, what I want is
from everybody and all the agencies throughout spreading rumors
about this bill too to my colleagues and other people, send me
ideas for amendments. Let us work on this, but let us not play
this game.
Thank you. I yield back.
Mr. Pitts. The Chair thanks the gentleman and now
recognizes the gentleman from North Carolina, Mr. Butterfield,
5 minutes for questions.
Mr. Butterfield. Thank you very much, Mr. Chairman, and
thank the witnesses for their testimony today. I will try to
look around Mr. Tonko and see all four of you. That is the
advantage of being on the bottom tier. That is fine, Paul. That
is fine.
But thank you for holding today's hearing. Certainly,
mental health is a very important issue. It is an important
issue to all four of you. It is an important issue to us and
certainly to the people that I represent in North Carolina, and
so that means that we have to do all that we can at the federal
level to ensure that people who are living with a mental
illness receive the treatment and support they deserve.
Some of my colleagues certainly know in my prior life I was
a trial judge in North Carolina, served for 15 long years in 32
counties in my State, and so I have seen firsthand what mental
illness can do not only to families but to communities, and so
I thank you for your passion.
I have read most of Mr. Murphy's bill, and I think it is a
good step, a step in the right direction. Certainly, there are
many improvements that we can make, and I thank the chairman
for offering us an opportunity to offer amendments to the
legislation and there will be several.
There are many different people involved in the continuum
of care for mental illness and it is important that we
recognize another category, and that is the role of social
workers in the continuum of care and the important role that
they play in mental and behavioral health infrastructure in our
country. The importance of the social work profession will
continue to increase as the mental and behavioral health
challenges impact a growing percentage of the population.
According to the U.S. Bureau of Labor Statistics, the need for
social workers specializing in mental health and substance
abuse is expected to grow by 23 percent from 2012 to 2022. That
is 10 years. That rate is much faster than the average for all
other occupations. Social work is built on a foundation of
integrated care working directly with patients, but in settings
including hospitals and schools and substance abuse prevention
and treatment programs and family service settings and long-
term care facilities. Social workers have a history of working
with and across disciplines including psychiatrists,
pharmacists, nurses and others and will play a central role as
we seek to improve health outcomes for people with mental and
behavioral issues.
I understand that part of the goal of this hearing is to
identify and fill gaps that exist in the health care workforce
in an effort to meet the unique needs of different populations
such as our veterans and people living in urban or rural
communities or adults.
Let me go to Dr. Shern if I can very quickly. We know that
health professions other than M.D.s and Ph.D.s have a growing
role in meeting the mental health needs in the United States.
Can you talk about your experiences and/or best practices
working with other professionals in an integrated and team-
based approach?
Mr. Shern. Yes, well, I think that that integrated team-
based approach that involves several different disciplines is
essentially the state of the art in terms of how services are
best delivered, particularly for people who have complex
conditions or have, in this case, severe mental illnesses, and
I think that there are real opportunities and real challenges
that we confront in terms of adequate health care workforce in
general and trying to understand and articulate different
roles, particularly roles for paraprofessionals, peers and
others and certainly including social work. You know, all of
this that we are talking about in terms of the integration of
care, understand that people live in communities, interact with
complex systems, that is the hallmark of social work's approach
to these issues. So I think many disciplines are involved. I
think the best treatment involves a multidisciplinary team and
I think that is basically considered state of the art in terms
of services for people with severe mental illness.
Mr. Butterfield. How do you see an integrated team-based
approach involving social workers and pharmacists and nurses
and others in addition to psychiatrists contributing to the
success of this legislation and addressing mental health needs?
Mr. Shern. Well, it is clear from research actually that
was done in the 1970s that multidisciplinary teams can both
save money in terms of decreasing utilization of the most
expensive resources and improve outcomes, and the disciplines
that you mentioned in your question would be the disciplines
that typically would be involved in those kinds of
multidisciplinary teams.
Mr. Butterfield. Finally, let me go to you, Ms. Thompson,
and thank you very much for your very passionate testimony. On
another day I will share with this committee my personal story.
I too grew up in a home with a mother who had mental illness.
It was paranoia. She was not a harm or threat to anyone except
herself, but it had a significant impact on her family and her
work. So thank you for your testimony.
Do you think this legislation does enough to recognize and
encourage an integrated team-based approach to addressing
mental health needs of patients and their families?
Ms. Thompson. As I said earlier, I haven't read the entire
bill. From my understanding, it addresses--the issue I have
with what has happened in my experience was that there was no
quality of life for my mother, so whatever it takes to create
an ability for people to have a better quality of life, whether
they know what it is or not, whether they are able to recognize
it for themselves or not, that I feel we have an obligation to
do that.
Mr. Butterfield. Thank you. My time is expired. I am sorry.
Mr. Pitts. The Chair thanks the gentleman and now
recognizes the gentlelady from North Carolina, Ms. Ellmers, 5
minutes for questions.
Mrs. Ellmers. Thank you, Mr. Chairman, and thank you to our
panel. Each one of you has very important information for us
today, and I would also like to congratulate and thank my
colleague, Mr. Murphy, for the work that he has done on this
issue, especially in relation to the HIPAA situation. As a
nurse before coming to Congress, I know that much of the
misinformation is parochial and it is misinterpreted or
overinterpreted and the clarifications are necessary so that
each health care professional can understand what can be
relayed because it is a very crucial time.
So with that, I do have a question for Ms. Zdanowicz and
for Ms. Thompson. Both of you are doing important work, and
your stories are compelling on a personal level as well. In
North Carolina, the past 10 years, the suicide rate has spiked
significantly from about 18 percent to 22 percent. I represent
Fort Bragg, and this affects our military, as you know, and our
soldiers as well. In fact, a statistic that I am reading here
that is provided for me says that actually this year into 2014,
there have been more soldiers who have died by their own hand
than those on the battlefield. Now, death in itself is not to
be embraced. However, when we look at that statistic, we know
the effects are incredible and that we need to deal with this
issue.
Obviously, medical beds, or patient beds, and psychiatric
beds are so essential, and we are in more need today than ever.
Today, North Carolina has only eight beds in a State
psychiatric hospital per 100,000 people. So I believe we are at
the lowest ratio, and one of our largest hospital systems in my
area of North Carolina, Wake Med, is basically struggling with
this issue. They treat an average of 314 patients a month whose
primary diagnosis is psychosis, and this is up one-third over
the last 2 years. Any given time, there are 25 to 50 patients
with a diagnosis of mental illness of some form that are not
necessarily in a dedicated psychiatric unit but are having to
be placed in other areas of the hospital, and as you can
imagine, that is difficult for the patient, the family and then
also the health care professionals who are taking care of them.
Ms. Zdanowicz, can you give us some points and guidance on
how we can improve this mental health bed situation?
Ms. Zdanowicz. Well, I would love to tell you that we could
convince States to increase the number of beds and increase the
number of long-term and intermediate-care beds that are just
disappearing but that is not going to happen, and that is why
assisted outpatient treatment is so important because it is a
way of keeping individuals who are not safe in the community
without medication on treatment, and there is empirical
evidence to show that it reduces hospitalization, reduces
incarceration, which, as I mentioned before, the jails and
prisons are the new State psychiatric hospitals. If we don't
have those kinds of facilities, we have to have a way of
ensuring that people who don't realize that they are ill, that
won't take their medication any other way have a means of
getting that support, and it is not just a court order of
somebody telling them. It comes with services. And I know
people who have experienced it, and it does not scare people
away and in fact it improves their lives. So unless we can get
more beds, this is a solution with the population we are
talking about, not everyone but the population we are concerned
about.
Mrs. Ellmers. Thank you.
And Ms. Thompson, I just want to thank you for the work
that you are doing. In Randolph County, which is one of my
counties that I represent, the crisis intervention training for
law enforcement is making a significant difference. Basically
this is sponsored by you and NAMI, and it has been incredible
work in the ability to have those law enforcement officers in
the situation, know when they have to react and be able to
engage and deescalate the situation, and it has made a huge
difference. However, we need to continue to show that this
program is working and we need greater coverage and reaching
out to some of the other law enforcement. How can we extend
this program? Do you know of the barriers? I know I am running
out of time, but can you identify the barriers that we can
address that might actually be able to help this situation?
Ms. Thompson. The situation in terms of getting more people
informed?
Mrs. Ellmers. Yes, or getting this program in place for
more law enforcement to learn about----
Ms. Thompson. This program is vital. You need to give
people the tools on how to deal with people in crisis, because
if you don't, that is where the abuse comes from. That is
really the abuse in the police department. That is where all of
that comes from is because you are asking them to deal with
something that they have no knowledge, that is not their skill
set, and it is not fair to them and it is not fair to the
individual.
But that needs to be funded. I mean, there is no way--we
can't do it alone. NAMI is trying desperately. We are a
volunteer-based organization. We are a nonprofit organization.
We try to reach out to law enforcement as much as we can. We
need help. We need funding.
Mrs. Ellmers. Thank you so much, and again, thank you to
our entire panel.
Thank you. I yield back the remainder of my time.
Mr. Pitts. The Chair thanks the gentlelady and now
recognizes the gentleman from Florida, Mr. Bilirakis, 5 minutes
for questions.
Mr. Bilirakis. Thank you so very much, Mr. Chairman. I want
to thank the panel for their testimony and of course coming to
Washington and sharing with us.
In addition to being on the E&C Committee, I also serve as
Vice Chairman of the Veterans' Affairs Committee, and we have
held several hearings over the years on the mental health
issues and of course, it is an extremely important issue. As a
matter of fact, Time magazine wrote back in 2012 that ``more
U.S. military personnel have died by suicide since the war in
Afghanistan began than have died fighting there.'' When they
take their own lives, these deaths diminish us as a whole. It
leaves behind spouses, children, parents, and siblings who must
deal with the loss and their own grief.
So when I look at H.R. 3717, and thank you, representative
Murphy, for filing the bill, the Helping Families in Mental
Health Crisis Act, I look at it from the viewpoint of our
veterans and their families, in addition to the general
population.
I want to thank the witnesses again for coming here today
and talking about these issues. It is so very important. It is
an invisible wound that millions grapple with each day. It
carries a stigma, as you said, and we need to help remove the
stigma so people aren't afraid to seek help. Mental health
issues are just as serious as visible physical wounds, in my
opinion. We must responsibly address this problem. Too many
Americans and their families are suffering, and they deserve
proper care, in my opinion.
Your experiences dealing with family members with mental
health issues, or living with it, or treating it helps inform a
lot of us in the debate. Again, thank you for being here. I
really appreciate it.
And I would like to yield the rest of my time to
Representative Murphy.
Mr. Murphy. I thank the gentleman for yielding.
A couple other clarifying points I want to make for
members. This bill does not cut 85 percent of federal funding
for the programs. It does not. There are multiple sources for
that federal funding. This is one of them. And so it is very
important that people are dealing with the facts.
Also, Dr. Shern, you referred to a coercive feature of
assisted outpatient treatment that would make people seek
treatment. Are you aware of the programs Ms. Zdanowicz is
talking about here with regard to the evidence on when AOT can
work to reduce incarceration, et cetera?
Mr. Shern. Yes, I am.
Mr. Murphy. So what I am trying to find out here, and I
recognize not all States do things the same way.
Mr. Shern. Right.
Mr. Murphy. For example, California has one county that
does this; the rest don't. And some States do it better than
others. I think New York does a pretty good job on that.
But in this bill, are you aware of how we define who would
qualify for assisted outpatient treatment?
Mr. Shern. Generally, yes.
Mr. Murphy. Well, we very narrowly defined that. They to be
incarcerated before, had multiple hospitalizations, but the
rest we leave up to the States because I think States should
decide a lot of this too. So I want to make sure we are making
it clear. There is no coercion involved here but we are saying
States have to have something on the books.
But let me ask the panelists this----
Mr. Shern. Can you clarify that a bit, the no coercion
involved in assisted outpatient treatment?
Mr. Murphy. I am saying with regard to the States, they can
put this together any way they want but we are saying----
Mr. Shern. Coercion of the States?
Mr. Murphy. Yes. What we are saying here is that as an
alternative to just waiting until someone is in imminent
danger, until someone has a knife to their head or someone
else's. We want to provide a mechanism by which people are not
just waiting for that ``someone is about to die'' standard.
That is something established in the 1700s. We need to be doing
more.
So what I want to ask here is, I am open to other ideas,
and what else could we do to make sure people--we have this
integrated care, this wraparound care. I mean, we know when
someone is in an acute crisis, that they need a lot of help and
long term. What would be a couple of those things? Ms.
Thompson, can you think of anything that we should make sure we
include here?
Ms. Thompson. Well, I think how HIPAA is addressed is vital
because, you know, waiting until somebody is at a risk to
themselves and others is waiting way too long to help them. We
are waiting way too long to step in.
Mr. Murphy. So making sure we have some way that families
can participate more would be helpful?
Ms. Thompson. That is correct.
Mr. Murphy. Dr. Shern, do you have any recommendations of
ways we could help provide some integrated wraparound services?
I mean, we have some in here now under the Excellence in Health
Care. You don't have to answer now but if you can provide us
some ideas, I would love to hear them.
Mr. Shern. Sure, and I think we have a pretty good evidence
base with regard to that and I think that where AOT has been
shown to be successful is in New York where there was a $125
million appropriation to enhance services.
Mr. Murphy. Ms. Zdanowicz, do you have any other
suggestions that we can do? I know you are in support of AOT
but any other things States should be doing?
Ms. Zdanowicz. Well, I mentioned earlier, I just finished a
survey of jails and prisons around the country, and this is
where we need more help, and it is something that is being
overlooked. I think it is coming to the forefront now. But that
is where are so many people with mental illnesses who are
refusing treatment, and what happens to them in those
situations, I have talked to jails and learned just how
horrible and dangerous and heartbreaking it is, and I think it
is something that we have to focus on and not only just
providing treatment in the institutions but keeping them out of
the institutions, and I have talked to police officers trained
to deal with people with mental illness. I was in a meeting
where they asked, after hearing all the evidence, you know, the
recovery-based peer support programs the State provides, a
police officer stood up and said well, when I call the State, I
can't get any help for this homeless person who is psychotic
and delusional. So I think those are the areas that we need to
have more integrated services.
Mr. Murphy. Mr. Chairman, for the record, I just want to
point out that in support of what Dr. Shern is saying, a report
says that ACT works but a report says we also found evidence in
the case manager data that receiving AOT combined with ACT
services--assertive community treatment--substantially lowers
risk of hospitalization compared to receiving ACT alone. So we
will work with you on that. Thank you.
Mr. Pitts. The gentleman yields back. The chair now notes
that the subcommittee members have concluded their questions,
and without objection, the Chair recognizes the gentleman from
New York who is also on the full committee, Mr. Tonko, 5
minutes for questions.
Mr. Tonko. Thank you, Mr. Chair.
Preliminarily, I state to our colleague and my friend, Mr.
Murphy, that many of us are engaged in regard to this bill. We
have read the bill and have sent you specific suggestions on
how we believe the bill can be improved. We all agree that
there are serious issues that need to be addressed but there
are also serious reservations out there to some provisions in
the instant bill. I think your intent is right, and we want to
continue to work with you, but it needs to be a collaborative
process. I commit to keeping an open dialog here so as to
exchange on behalf of the issues and to recognize the
importance of the issues here, the people most importantly
impacted by mental health disorders and mental illnesses are of
high need. So we need to recognize that and move forward with
the sense that more than one point of view needs to be
exchanged here in order for us to move forward most
effectively.
I also want to make the record clear that the protection
and advocacy organizations are already precluded, prohibited by
federal law from using any federal funds for lobbying purposes.
Any lobbying activities conducted by these organizations, most
notable organizations, are done with private dollars.
Certainly, this would be restricted as lobbying activities with
private funds which as I am sure my colleagues on the other
side of the aisle would agree with in the way of yesterday's
Supreme Court ruling could raise significant free-speech
concerns, and I think those free-speech concerns are essential
here for these organizations using private dollars.
With that being said, I thank you again, Mr. Chair, for the
opportunity. This issue is near and dear to my heart. I served
in the New York State Assembly before coming to Congress. One
of my proudest achievements in 25 years of service in that body
was Timothy's Law. I was the prime sponsor of mental health
parity in New York. I have the utmost respect for the mental
health community and for those who advocate. Their resilience,
their determination is stellar, and I recognize that, and I
recognize the work done by the Oversight and Investigations
Subcommittee to examine issues surrounding mental health.
While there are many aspects of this bill with which I
strongly disagree in its current form, I think that the intent
is right on and it is in the right place, and I hope that we
can continue to have bipartisan discussions to improve the
bill. Those struggling with mental illnesses deserve nothing
less.
So Mr. Shern, in your testimony you speak to the fact that
our treatment systems should be welcoming rather than
frightening. I couldn't agree more. And I think everyone in
this room recognizes that voluntary community-based treatment
is always preferable and leads to better outcomes in the long
run.
One of the more difficult questions we are weighing as a
panel is what circumstances more coercive forms of treatment,
whether this is assisted outpatient treatment or inpatient
hospitalization might be necessary. In your opinion, when is it
appropriate, if ever, to resort to these more coercive forms of
treatment when dealing with an individual with serious mental
illness?
Mr. Shern. Well, I think, in situations in which a person
doesn't have the capacity to make the decisions necessary to
preserve their safety or is a threat to another person, which
is the standard sort of commitment that laws that exist across
the country. At that point in time we have provisions for
involuntarily treating individuals. When we implemented our New
York City program, our Manhattan program for people who had
severe mental illnesses and were living on the streets of New
York, I personally witnessed people literally running from our
program because of--literally running, jumping onto the Staten
Island Ferry by slipping under the door right before the ferry
took off rather than be engaged by our program. So I personally
have experienced people running from care because of coercive
interventions.
Mr. Tonko. And Mr. Shern, does the evidence show that
assisted outpatient treatment programs are more effective than
similarly resourced assertive community treatment programs?
Mr. Shern. It is my understanding that those situations in
which AOT has been shown to be effective both in the Duke
trials and in the New York State experience were situations in
which there were enhanced services available. Compelling people
into a service system that doesn't exist is not going to make a
difference.
Mr. Tonko. And when States have adopted more expansive
need-for-treatment standards for civil commitment, have we seen
an impact on individuals seeking care voluntarily?
Mr. Shern. Coercive interventions can chase people from
care.
Mr. Tonko. Thank you very much, and with that, I yield back
as I see I have exhausted my time.
Mr. Pitts. The Chair thanks the gentleman. The Chair
overlooked one member of the subcommittee, so at this time
yields 5 minutes to Mr. Griffith from Virginia.
Mr. Griffith. Thank you very much, Mr. Chairman, and I
apologize to both you, Mr. Chairman, and to our panelists. I
have been involved in another hearing as well and so I have
been running up and down the stairs trying to make sure I got
here.
I want to agree with Representative Tonko in saying that
putting this forward by Dr. Murphy is a big step. Somebody has
to put it forward. We have been studying it for a little while.
He decided to take that leap, and I commend him for that
because that is very, very important. There are things in a
bipartisan fashion that we can work on to improve the bill, and
I heard Dr. Murphy say earlier he is looking for those
suggestions.
That being said, I also want to underscore that HIPAA does
have to be addressed. It doesn't mean we want to undo the
principles of HIPAA. It doesn't mean we want to, you know, let
everybody have access. But we heard so much testimony from so
many family members who wanted to help, people who loved the
individual with mental health problems who wanted to be there
for them, and in many cases were not able to be there to take
care of them because they were blocked. They were blocked from
having the necessary knowledge to know whether or not they were
a risk to themselves or to others. They were blocked because
they didn't know exactly what was going on. So we have to
improve that.
Where I would like to see improvements in this bill is in
figuring out how to define that because when you look at
Section 301, we have a real opportunity to work on that across
the board, all parties coming together and figuring out how we
do that. My concerns particularly relate to two groups of
individuals. You have got the elderly. It is pretty obvious
that with an elderly person, if you have competing children--I
used to do divorce work in my small town private practice. I
did a lot of criminal work. People will fight over all kinds of
things and particularly when it becomes mom or dad, family
members get into a fight. So we have to figure out a system
where if you have got a child who hasn't been involved in mom's
life for 20 years, that they don't come waltzing in and knock
Ms. Thompson out because all family members get it.
Also, I worry in that same situation, that young men, we
have heard so much testimony that young men particularly in
that suspect group, 14 to 18 is a problem but 14 to, I think it
was 28--Dr. Murphy can correct me on my ages--where there is a
lot of onset of first signs of mental illness and they don't
get treatment. Fourteen to 18, parents are still involved. On
that 18th birthday, they get knocked out. And whether that is
what HIPAA is supposed to do or not, it is the way it is
interpreted, and if you are worried about a lawyer suing you
for giving away the information, you are not going to do it as
a doctor. No matter what different people may think it means,
Dr. Murphy is right. We have got to clarify it. But then I also
worry if you have too big a door for people to get information,
does that estranged father come back in, never having
participated in his son's life and now the son is 22 and he
decides he wants to come in and knock mom out.
So that is the scenario that I am looking at. I think we
can make improvements. And with that, Mr. Chairman, I yield to
Dr. Murphy.
Mr. Murphy. I thank the gentleman. I also thank you for
your commitment to help us improve that language. It is
important. We have had too many people raise concerns so we
have to do it the right way.
Dr. Shern, you had mentioned that you are aware--well, let
me ask you, are you aware of any study at all, empirical,
published study, that supports your understanding that broader
commitment standards drive people away from seeking treatment?
Are you aware of any particular study offhand or can you
provide that for us?
Mr. Shern. I can look into it. I am not aware of any
offhand.
Mr. Murphy. OK. I appreciate that, because you made the
statement. I want it backed up with evidence.
I also want to say that what I was reading before, the
quote I forgot to reference is where it said that AOT combined
with ACT services substantially lowers risk of hospitalization
compared to receiving ACT alone. This is the study done by Duke
University Policy Research Associates and the University of
Virginia School of Law on the New York State assisted
outpatient treatment program evaluation. So there is a lot we
can learn from New York.
One other thing I want to mention, when I refer to some of
the concerns I have, and Ms. Jensen, you brought a very
compelling story forward on what happened with that horrible
place you were in, and I am glad you fought hard to shut it
down, but also some of these groups also cause some problems
too. A case we heard was from Joe Bruce. His son William was
diagnosed with some psychosis. He was in Maine. And these
advocates came in. This family was completely cut off from
being able to talk to their son, which is a HIPAA issue, yet
these advocates could talk to him, coached him during a hearing
on this, and told him to say when he was asked if he was going
to be a harm to himself or someone else say no. He listened to
their coaching. He was dismissed from the hospital. He went
home. He took a hatchet and chopped his mother to pieces.
This was very moving testimony this committee heard. We
don't think a group like this has any business telling someone
get them out of treatment altogether. We want professionals
involved who are looking out for the best interest of the
patients all the way through.
Mr. Chairman, I want to thank you for this hearing today.
We have heard some powerful information. I look forward to
working with my colleagues on both sides of the aisle on this.
The good news is, we have elevated this to the level of
Congressional discussion instead of keeping it in the dark
shadows. We have understood that this isn't just an issue of
violent mentally ill. We have to work together. I am excited
about this, and I want to leave with a message of hope for the
many people who are struggling with mental illness. We will
continue to listen to you. We want to work together. We have
got to change this system and help you all.
With that, I yield back.
Mr. Pitts. The Chair thanks the gentleman, and thanks him
for his leadership on this issue. This has been a very
important hearing, very compelling testimony, very informative.
Thank you very much to the witnesses for coming.
Now, we have members who may have follow-up questions who
were not able to attend. They are in other hearings. We will
send you the written questions. We ask that you please respond
promptly. Do you have something?
Mr. Tonko. Yes, Mr. Chair. We ask that these documents be
included in the record.
Mr. Pitts. We have a unanimous consent request to include
in the record testimony of the National Disability Rights
Network; a letter from the American Psychiatric Association;
testimony by the National Coalition of Mental Health Recovery;
testimony titled Helping Families in Mental Crisis Act, H.R.
3717 by the Citizen Commission on Human Rights \*\; a letter by
Consortium for Citizens with Disabilities; and testimony by
Judge David Bazelon Center for Mental Health Law. Without
objection, so ordered.
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\*\ The information has been retained in committee files and is
also available at http://docs.house.gov/meetings/if/if14/20140403/
102059/hhrg-113-if14-20140403-sd008.pdf.
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[The information appears at the conclusion of the hearing.]
Mr. Pitts. I remind members that they have 10 business days
to submit questions for the record. That means members should
submit their questions by the close of business on Thursday,
April 17.
Thank you again very much for attending. Without objection,
the subcommittee is adjourned.
[Whereupon, at 12:48 p.m., the subcommittee was adjourned.]
[Material submitted for inclusion in the record follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
[Dr. Welner's response to submitted questions for the
record has been retained in committee files and can be found at
http://docs.house.gov/meetings/if/if14/20140403/102059/hhrg-
113-if14-wstate-welnerm-20140403-sd002.pdf.]
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