```

[Senate Hearing 111-696]
[From the U.S. Government Publishing Office]

                                                        S. Hrg. 111-696
 
                   THE ADA AND OLMSTEAD ENFORCEMENT:
                    ENSURING COMMUNITY OPPORTUNITIES
                   FOR INDIVIDUALS WITH DISABILITIES

=======================================================================

                                HEARING

                                 OF THE

                    COMMITTEE ON HEALTH, EDUCATION,
                          LABOR, AND PENSIONS

                          UNITED STATES SENATE

                     ONE HUNDRED ELEVENTH CONGRESS

                             SECOND SESSION

                                   ON

   EXAMINING THE AMERICANS WITH DISABILITIES ACT (ADA) AND OLMSTEAD 
     ENFORCEMENT, FOCUSING ON ENSURING COMMUNITY OPPORTUNITIES FOR 
                     INDIVIDUALS WITH DISABILITIES

                               __________

                             JUNE 22, 2010

                               __________

 Printed for the use of the Committee on Health, Education, Labor, and 
                                Pensions

  Available via the World Wide Web: http://www.gpoaccess.gov/congress/
                                 senate

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          COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS

                       TOM HARKIN, Iowa, Chairman

CHRISTOPHER J. DODD, Connecticut     MICHAEL B. ENZI, Wyoming
BARBARA A. MIKULSKI, Maryland        JUDD GREGG, New Hampshire
JEFF BINGAMAN, New Mexico            LAMAR ALEXANDER, Tennessee
PATTY MURRAY, Washington             RICHARD BURR, North Carolina
JACK REED, Rhode Island              JOHNNY ISAKSON, Georgia
BERNARD SANDERS (I), Vermont         JOHN McCAIN, Arizona
SHERROD BROWN, Ohio                  ORRIN G. HATCH, Utah
ROBERT P. CASEY, JR., Pennsylvania   LISA MURKOWSKI, Alaska
KAY R. HAGAN, North Carolina         TOM COBURN, M.D., Oklahoma
JEFF MERKLEY, Oregon                 PAT ROBERTS, Kansas          
AL FRANKEN, Minnesota                
MICHAEL F. BENNET, Colorado          

                      Daniel Smith, Staff Director

     Frank Macchiarola, Republican Staff Director and Chief Counsel

                                  (ii)

  
?

                            C O N T E N T S

                               __________

                               STATEMENTS

                         TUESDAY, JUNE 22, 2010

                                                                   Page
Harkin, Hon. Tom, Chairman, Committee on Health, Education, 
  Labor, and Pensions, opening statement.........................     1
Enzi, Hon. Michael B., a U.S. Senator from the State of Wyoming, 
  opening statement..............................................     3
Perez, Thomas E., Assistant Attorney General, Civil Rights 
  Division, U.S. Department of Justice...........................     5
    Prepared statement...........................................     8
Mann, Cindy, J.D., Director, Center for Medicaid, Chip and Survey 
  and Certification, Centers for Medicare and Medicaid Services, 
  U.S. Department of Health and Human Services...................    11
    Prepared statement...........................................    13
Merkley, Hon. Jeff, a U.S. Senator from the State of Oregon......    21
Franken, Hon. Al, a U.S. Senator from the State of Minnesota.....    23
Hagan, Hon. Kay R., a U.S. Senator from the State of North 
  Carolina.......................................................    24
Bernstein, Robert, Ph.D., Executive Director, Bazelon Center for 
  Mental Health Law..............................................    28
    Prepared statement...........................................    30
Knight, Jeffrey, Frederick, MD...................................    34
    Prepared statement...........................................    35
Thaler, Nancy, Executive Director, National Association of State 
  Directors of Development Disabilities Services (NASDDDS).......    37
    Prepared statement...........................................    40
Buckland, Kelly, Executive Director, National Council on 
  Independent Living.............................................    46
    Prepared statement...........................................    49
Casey, Hon. Robert P., Jr., a U.S. Senator from the State of 
  Pennsylvania...................................................    53

                          ADDITIONAL MATERIAL

Statements, articles, publications, letters, etc.:
    Response to questions of Senator Enzi by Cindy Mann..........    58

                                 (iii)

  

THE ADA AND OLMSTEAD ENFORCEMENT: ENSURING COMMUNITY OPPORTUNITIES FOR 
                     INDIVIDUALS WITH DISABILITIES

                              ----------                              

                         TUESDAY, JUNE 22, 2010

                                       U.S. Senate,
       Committee on Health, Education, Labor, and Pensions,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 2:35 p.m., in 
Room SD-430, Dirksen Senate Office Building, Tom Harkin, 
chairman of the committee presiding.
    Present: Senators Harkin, Casey, Hagan, Merkley, Franken, 
and Enzi.

                  Opening Statement of Senator Harkin

    The Chairman. The committee on Health, Education, Labor, 
and Pensions will come to order.
    Eleven years ago today, the U.S. Supreme Court decided 
Olmstead v. L.C., a landmark case on the rights of individuals 
with significant disabilities to receive their necessary 
services and supports in the community rather than in a nursing 
home or in another institution. The Olmstead decision was a 
critical step forward for our Nation, articulating one of the 
most fundamental rights for all Americans with disabilities--
having the choice to live independently.
    The Olmstead case involved two women with disabilities who 
lived in the Georgia State Institution for Individuals with 
Mental Illness. Although treatment professionals eventually 
concluded that each woman was capable of living in a community-
based program, both remained institutionalized. The women filed 
suit, requesting that they be allowed to move into their own 
homes in the community, and eventually the case wound its way 
up to the U.S. Supreme Court.
    In the Americans with Disabilities Act in 1990, we 
described the isolation and segregation of individuals with 
disabilities as a serious and pervasive form of discrimination. 
In Title II of the ADA, which proscribes discrimination in the 
provision of public services, we specified that no qualified 
individual with a disability shall, by reason of such 
disability, be excluded from participation in or denied the 
benefits of a public entity's services, programs, or 
activities.
    In addition, we authorized the Justice Department to issue 
regulations implementing title II's discrimination 
proscription. One such regulation was the so-called 
``integration mandate,'' which requires a public entity to 
administer programs in the most integrated setting appropriate 
to the needs of individuals with disabilities. Simply stated, 
this means a setting which enables individuals with 
disabilities to interact with nondisabled persons to the 
fullest extent possible.
    To accomplish this, public entities are required to make 
reasonable modifications in their policies, practices, and 
procedures. In Olmstead, the court held that the unnecessary 
institutionalization of individuals with disabilities 
constitutes discrimination and that the two women must be 
provided community-based options. In reaching this decision, 
the court said:

          ``Recognizing that unjustified institutional 
        isolation of persons with disabilities is a form of 
        discrimination that reflects two evident judgments: 
        First, institutional placement of persons who can 
        handle and benefit from community settings perpetuates 
        unwarranted assumptions that persons so isolated are 
        incapable or unworthy of participating in community 
        life.
          ``Second, confinement in an institution severely 
        diminishes the everyday life activities of individuals, 
        including family relations, social contacts, work 
        options, economic independence, educational 
        advancement, and cultural enrichment.''

    The Olmstead decision challenges Federal, State, and local 
governments to develop more community-based opportunities for 
individuals with disabilities. I've worked hard in Congress 
over those years to increase the availability of home and 
community-based services, first through the Money Follows the 
Person program, now the Community First Choice Option.
    To date 30 States have been awarded grants under the Money 
Follows the Person program in order to transition individuals 
from institutions. In the new comprehensive health reform law, 
this program is extended through 2016 and its eligibility is 
expanded.
    In addition, in the new health care bill, beginning in 
October 2011 the Community First Choice Option kicks in, the 
components of which are really the Community Choice Act. States 
that select it will receive enhanced Federal matching funds. 
Specifically, the Community First Choice Option will cover the 
provision of personal care services to help with the activities 
of daily living such as dressing, bathing, grooming, and eating 
that allow people to be able to live independently.
    On this score, I always tell the story about my nephew 
Kelly, who became paraplegic while serving in the U.S. Navy. 
Again, because he was in the military all of his disability 
functions are paid for by the Veterans Administration. So the 
VA pays for his attendant services. He lives by himself in his 
own home, drives his own van. But his attendant services on a 
daily basis allows him to get up in the morning, go to work, 
operate a small business, pay taxes, and be a fully 
contributing member of our society, plus having those contacts 
and social contacts and interaction that so many of us just 
take for granted in our daily lives.
    Community-based services and supports allow people to lead 
these independent lives and have these jobs, and participate in 
the community. Many will become taxpayers. Many will 
participate in civic life. But all will have a chance to make 
their own choices and govern their own lives.
    Today we have gathered a number of distinguished witnesses 
from the Department of Justice and CMS, as well as disability 
advocates who have been in the forefront of making Olmstead a 
reality. I will introduce our first panel, but first I'll yield 
to Senator Enzi for his opening statement.

                   Opening Statement of Senator Enzi

    Senator Enzi. Thank you, Mr. Chairman, and I want to thank 
you for your leadership on this important issue and all of the 
issues that deal with Americans with Disabilities. You've been 
a champion on that for decades and were one of the prime movers 
on this one before.
    I'd also like to thank the witnesses for taking time out of 
their schedules to be with us. It's a pleasure to welcome all 
of you to our hearing.
    Today's hearing recognizes an important event that took 
place 11 years ago today as, as the chairman mentioned, on June 
22, 1999, the U.S. Supreme Court ruled in the Olmstead 
decision, which requires that States must provide individuals 
with disabilities with community-based long-term care services 
and transfer people into such settings when a State treatment 
professional has determined such an environment is appropriate, 
the community placement is not opposed by the individual, and 
the placement can be reasonably accommodated.
    The Olmstead decision, as it is known, was a landmark that 
has helped to reshape years of policy in which more costly 
institutional care was the norm and not helpful. Today we will 
be discussing this important decision and also where we are 
today in our efforts to implement it.
    Shortly after the court issued its ruling, President Bush 
announced the New Freedom Initiative as part of a nationwide 
effort to remove barriers to community living for people with 
disabilities. On June 18, 2001, President Bush also issued 
Executive Order 13217, ``Community-Based Alternatives for 
Individuals with Disabilities.'' The order called upon the 
Federal Government to assist States and localities so the U.S. 
Supreme Court's decision could be implemented swiftly and 
without delay.
    Several agencies, including the Department of Justice and 
the Department of Health and Human Services, were required to 
work with the States to help them determine how well they were 
complying with the Olmstead decision and develop work plans to 
provide services to qualified individuals with disabilities in 
the most integrated settings. The Departments of Justice and 
Health and Human Services were also charged with enforcing 
Title II of the Americans With Disabilities Act and 
investigating and resolving complaints filed on behalf of 
individuals who had alleged that they had been victims of 
unjustified institutionalization.
    In June 2009, President Obama announced the Year of 
Community Living to mark the 10th anniversary of the Olmstead 
decision. Shortly thereafter, the Department of Health and 
Human Services announced the Community Living Initiative, which 
includes implementing solutions that address barriers to 
community living for individuals with disabilities and older 
Americans.
    I look forward to hearing from witnesses from the 
Department of Justice and from the Department of Health and 
Human Services, specifically the Centers for Medicare and 
Medicaid Services, and learning more about what's working and 
what needs to be improved as States across the Nation work to 
ensure that the requirements of the Olmstead decision are met.
    More important than any bureaucracy, the decision is about 
helping people so they can live where they want to live. As 
previous HELP hearings have highlighted, many Americans do not 
have the resources necessary to pay out-of-pocket for long-term 
care in an institution. According to the Congressional Budget 
Office, fewer than 7 percent of seniors have annual incomes 
equal to or greater than the annual cost of a nursing home 
stay.
    Even more important, most Americans do not want to live in 
nursing homes and other institutions. When speaking with 
seniors and those with long-term care needs in my home State of 
Wyoming, one thing I often hear is that they would rather stay 
in the community than live in a nursing home or other 
institution.
    Not only is the community the preferred living option among 
Americans, it's also less costly. The Amerigroup Corporation 
reports being able to provide services for three people living 
in the community for the cost of one person living in a nursing 
home. They also report that the Texas Health and Human Services 
Commission has concluded that community-based services cut 
health care and long-term care costs by 6.5 percent.
    Less costly, community-based services and supports are 
being actively pursued and funded through Aging and Disability 
Resource Center programs which were authorized by the Older 
Americans Act and the Centers for Medicare and Medicaid 
Services' Money Follows the Person, MFP, demonstration program, 
as well as by Medicaid Infrastructure Grants. Additionally, 
Wyoming is using the Green House Project as a model for 
community-based service delivery. The Green House Project has 
taken the next step in de-institutionalizing skilled nursing 
care by moving care into real neighborhoods and small towns 
across rural America. This model reduces the reliance on costly 
institutional care and provides community-based options and 
services in the neighborhoods where beneficiaries and their 
families live.
    I hope this hearing will make it clear that we need to 
think more creatively and figure out ways in which all 
Americans can access community services and receive the support 
they need to lead more rewarding and fulfilling lives in the 
community.
    Again, I want to thank the witnesses for their 
participation and I want to congratulate and thank the chairman 
for his continued active, constant interest in Americans with 
Disabilities. I look forward to the testimony.
    The Chairman. I thank you very much, Senator Enzi, for 
those kind words, and thank you for all of your willingness to 
work together on these issues. This truly has been a very 
bipartisan issue. From the ADA on, we have done everything we 
can to make this strictly bipartisan, the ADA Amendments Act 
that we worked on together, that was signed in the Bush 
administration, the previous administration, that we got 
passed. So it always has been a very strong bipartisan effort 
and I appreciate that.
    Well, we have two panels today. Our first panel is, Mr. 
Thomas Perez. Mr. Perez is the Assistant Attorney General for 
the Civil Rights Division at the U.S. Department of Justice. 
He's spent his entire career in public service, first as a 
career attorney at the Civil Rights Division, then as Assistant 
Attorney General for Civil Rights at the Justice Department, 
and then later as Director of the Office for Civil Rights at 
the U.S. Department of Health and Human Services.
    I also note that he served as Special Counsel to the late 
Senator Edward Kennedy, serving as Senator Kennedy's principal 
adviser on civil rights, criminal justice, and constitutional 
issues. Mr. Perez is certainly no stranger to this committee 
here.
    Mr. Perez received his master's degree from Brown 
University and a master's of public policy from the J.F. 
Kennedy School of Government, and a Juris Doctor from Harvard 
Law School in 1987.
    Joining Mr. Perez on our first panel is Cindy Mann. Ms. 
Mann is Director of the Center for Medicaid and State 
Operations, which is part of the Centers for Medicare and 
Medicaid Services, CMS as we call it. She most recently served 
as a research professor and Executive Director of the Center 
for Children and Families at Georgetown University's Health 
Policy Institute.
    She has also had extensive State-level experience, having 
worked on health care, welfare, and public finance issues in 
Massachusetts, Rhode Island, and New York. Ms. Mann received 
her law degree from New York University School of Law.
    We welcome you here. Thank you for being here on our panel. 
Again, as you know, your statements will be made a part of the 
record in their entirety, and we welcome you to make whatever 
comments you want to make. Try to keep it at 5, 6, or 7 
minutes, and then we can engage in a discussion.
    So Mr. Perez, first of all we'll start with you. Welcome 
again back to the committee. It's always good to see you, and 
thank you for all your good work you do on behalf of people 
with disabilities.

       STATEMENT OF THOMAS E. PEREZ, ASSISTANT ATTORNEY 
      GENERAL, CIVIL RIGHTS DIVISION, U.S. DEPARTMENT OF 
                            JUSTICE

    Mr. Perez. Thank you, Mr. Chairman. It's always a pleasure 
to be here. Senator Enzi, Ranking Member, thank you for your 
leadership on this issue. Indeed, disability rights has always 
been a bipartisan issue in this Congress and in this country. 
The Attorney General looks forward to celebrating the 20th 
anniversary of the ADA with former Attorney General Thornburg 
to mark the bipartisan history of the Department.
    Eleven years ago when the decision came down, I was the 
Director of the Office for Civil Rights at the Department of 
Health and Human Services, and in that capacity I had the 
privilege of serving as one of Secretary Shalala's point people 
on Olmstead. We had hoped that the Olmstead decision would be 
more or less the Brown versus Board of the disability rights 
movement, catalyzing very quick and effective transformation 
from the institutional bias to the community biases. 
Undeniably, many States have made great strides in that effort, 
but we have undeniably a long way to go.
    This is about real people, including the people in this 
audience behind me, including people I have had the privilege 
of meeting across the country, including people like Paul Boyd, 
someone whom I met recently in my outreach in Birmingham, AL. 
In 1995, he was a college sophomore. He had an accident that 
left him paralyzed below the collarbone. He eventually 
graduated from college, but by then he had entered a nursing 
home and, in his own words, it made it ``next to impossible'' 
for him to find work.
    He wants to be just like your nephew. He wants to go to 
graduate school. He wants to be a counselor. He wants to be a 
productive taxpayer in this community. But he can't, because 
he's stuck in a nursing home and he doesn't need to be there. 
That is the story of Paul Boyd and, regrettably, there are 
quite literally millions of Paul Boyd's throughout this country 
who with the appropriate supports can, should, and ought to be 
living in community-based settings. As long as there are people 
like Paul, there is far too much work to be done.
    As I've said in prior hearings, the Civil Rights Division 
is again open for business, and we have made Olmstead 
enforcement a top priority and we've had a landmark year. The 
division has filed amicus briefs in cases in Connecticut, 
Virginia, North Carolina, Illinois, Florida, New Jersey, and 
California. We have filed lawsuits in Arkansas and Georgia and 
we intervened in a case in New York.
    These cases involve individuals with a wide range of 
disabilities who can and want to live in the community. The 
Olmstead decision applies to all people with disabilities, not 
simply people with certain kinds of disabilities.
    In addition to stepping up our enforcement, our approach to 
institutional investigations has changed. We've built a new 
paradigm. In the past we conducted much of this work by asking 
one and only one question, which was whether the facilities 
were safe and met constitutional minimums. That continues to be 
a critically important question, but we must also ask another 
question: Are there individuals in that institution who can and 
want to live in the community with the appropriate supports?
    So we are focused on the twofold analysis. We're conducting 
the Olmstead analysis, and that is, if they can live in the 
community, that we are equally rigorous and robust in ensuring 
that the community-based services they receive are adequate, 
appropriate, and carefully monitored.
    My written statement provides more details about some of 
the efforts I've just described, but I'd like to talk to you 
about two of our recent actions. In January, the division filed 
a motion for immediate relief in a case involving seven State-
run psychiatric hospitals in Georgia, including the facility 
that was at the heart of the Olmstead case more than a decade 
ago. The division found that hundreds of individuals who can 
and should be served in the community remained 
institutionalized and exposed to often dangerous conditions.
    I personally traveled to the State of Georgia to meet with 
the governor and to express to him our seriousness about this 
matter and our desire to fix the problem, not to fix the blame. 
In one of the most egregious examples in Georgia, a 14-year-old 
girl with mental illness died after becoming lethally 
constipated. She had been prescribed an assortment of 
medications, many of which commonly caused constipation. On the 
day before she died, she complained of stomach pain and had 
nausea and vomiting. An autopsy found that her colon was 
stretched almost to the point of bursting. An investigation 
found that her impacted bowels had developed over time and 
could have been detected with more rigorous medical care. We 
are currently involved in settlement negotiations in Georgia 
and I hope we will be able to resolve that case.
    Last month in Florida, the Department filed a statement of 
interest to support Michele Haddad's lawsuit against the State. 
Ms. Haddad is a 49-year-old with a spinal cord injury who is 
quadriplegic and uses a wheelchair. Her lawsuit alleges that 
Florida fails to provide community-based services to Medicaid-
eligible individuals with spinal cord injuries who are at risk 
of institutionalization.
    Haddad has successfully resided in the community since 
2007, but is at risk of entry into a nursing home due to 
changes in her caregiver situation. She's been on the waiting 
list for 2 years and she notified the State of her increased 
need for services. This is what the State told her. The State 
told her that she would be eligible for services only if she 
entered a nursing home and stayed there for at least 60 days. 
So go into the nursing home and then ask for a permission slip. 
That's why we filed a brief and a complaint and a declaration 
for a preliminary injunction, because she too wants to be just 
like your nephew, Mr. Chairman, and live in the community.
    These efforts reflect just one piece of an administration-
wide effort. Last year, as you know, President Obama proclaimed 
the Year of Community Living, recognizing the need for 
unprecedented collaboration to cultivate systemic, sustainable 
reform. We are doing just that. We are transforming our 
relationships with our key partners, our partners at HHS.
    Cindy Mann is a rock star. I want to state that for the 
record. And her work at CMS has been invaluable. The work of 
the Office for Civil Rights in the Georgia case has been 
invaluable. The work of the Substance Abuse and Mental Health 
Service Administration providing technical assistance as we 
draw a blueprint for reform in Georgia has been invaluable. The 
work of the nonprofit partners who are involved in the Georgia 
case and in so many other cases has been invaluable. Many of 
those private attorneys general are sitting behind me today and 
many others are toiling away in Minnesota, Oregon, Wyoming, 
Iowa, and so many other places, making sure that the Olmstead 
decision is given full force and effect.
    There are indeed those who argue that now is not the time 
to implement Olmstead aggressively due to the budget 
constraints that State governments are confronting. I do agree 
that now is not the time. We should have started years and 
years ago. And we are indeed making progress, but we have a 
long way to go, and the evidence has shown that you can 
implement Olmstead in ways that are indeed both cost-effective, 
legally sufficient, and humane.
    I look forward to any questions you have and I'm very 
excited about describing the work that we're doing on behalf of 
vulnerable people across this country with disabilities. Thank 
you very much, Mr. Chairman.
    [The prepared statement of Mr. Perez follows:]

                 Prepared Statement of Thomas E. Perez

    Good morning Chairman Harkin, Ranking Member Enzi and members of 
the committee. Thank you for holding this hearing on the anniversary of 
the Olmstead v. L.C. decision, a ruling that has often been called the 
Brown v. Board of Education of the disability rights movement.
    Indeed, Olmstead was a landmark decision that recognized the civil 
rights of individuals with disabilities as well as the benefits of 
community living, and has changed the lives of so many who would 
otherwise be hidden away behind institutional walls. The Court's 
decision acknowledged that segregating individuals with disabilities in 
institutional settings deprives them of the opportunity to participate 
in their communities, interact with individuals who do not have 
disabilities and make their own day-to-day choices; it also recognized 
that unnecessary institutionalization stigmatizes people with 
disabilities, reinforcing misunderstanding and negative stereotypes. 
Eleven years after the Supreme Court recognized that 
institutionalization of individuals who are capable of living in and 
would benefit from community settings is discrimination that deprives 
those individuals of their freedom, many States have made great strides 
in expanding treatment options.
    But for all of the progress made, I continue to hear about people 
like Paul Boyd, who I had the opportunity to meet earlier this year 
while on a trip to Birmingham, AL. In 1995, while a sophomore at Troy 
State University, Paul was injured in an accident that left him 
paralyzed below the collar bone. Paul eventually returned to college in 
his hometown of Montevallo, graduating in 2007 with a bachelor of fine 
arts degree. In December 2006, Paul entered a nursing home, and in his 
own words, it is ``next to impossible'' for him to find work that would 
allow him to live independently. Earlier this year, Paul was accepted 
to a graduate program at the University of Montevallo to seek his 
master's degree in community counseling. However, his classes would be 
at night, and he is not sure that he will be able to begin the program 
because of lack of transportation from his facility, which is 13 miles 
from the University. Paul told us that if he could get out of the 
nursing facility and receive services in his community in Montevallo, 
he could easily make it to his classes. In order to live independently, 
he would need the assistance of healthcare workers to help him bathe 
and dress and get into his wheelchair. He would also need assistance 
with some basic household chores. Montevallo is Paul's hometown, and 
while he has an extended support network of siblings and friends there, 
that is not enough, and the community-based services he needs to live 
independently simply are not available.
    Sadly, Paul's story is not an exception. According to the Kaiser 
Commission on Medicaid and the Uninsured, more than 393,000 people sat 
on waiting lists for home and community-based services in 2008, the 
most recent year for which figures are available. That number 
represents an increase of more than 200,000 since 2002.
    We should celebrate progress made since the Olmstead ruling, but as 
long as people like Paul and the many others waiting for a chance to 
live in the community are segregated in institutions, there is clearly 
more work to be done. The real reason I am here on the anniversary of 
Olmstead is to discuss the work that still lies ahead and the efforts 
of the Justice Department and the Obama administration to address the 
challenges that remain.

               CIVIL RIGHTS DIVISION OLMSTEAD ENFORCEMENT

    The Civil Rights Division's Disability Rights Section, which 
enforces Title II and Title III of the ADA, and Special Litigation 
Section, which enforces the Civil Rights of Institutionalized Persons 
Act (CRIPA), have made Olmstead enforcement a top priority, and the 
first year of the Obama administration proved to be a landmark year. 
The Division has filed amicus briefs in cases in Connecticut, Virginia, 
North Carolina, Illinois, Florida, New Jersey and California; filed 
lawsuits in Arkansas and Georgia and intervened in a case in New York.
    In addition to stepping up enforcement, our current approach to 
cases of unnecessary institutionalization represents a paradigm shift. 
In the past, we conducted much of our institutional investigatory work 
under our CRIPA authority by first asking whether the institutions 
under investigation were safe, and whether the conditions of 
confinement were constitutional. This is a critical question, and one 
that must be evaluated any time we investigate an institution. But it 
should be the second question we ask. First, we must ask whether there 
are individuals in those institutions who could appropriately receive 
services in a more integrated setting.
    In January, the Division filed a motion for immediate relief in a 
case involving seven State-run psychiatric hospitals in Georgia, 
including the facility that was at the heart of the Olmstead case more 
than a decade ago. A year prior to our motion, the Division and the 
State entered into an agreement to ensure that individuals in the 
hospitals were served in the most appropriate integrated settings and 
that unlawful conditions in the hospitals were remedied, but the court 
had not yet approved the agreement. After monitoring conditions at the 
hospital, the Division found that hundreds of individuals who could and 
should be served in the community remained institutionalized. In 
addition to this unlawful segregation, individuals in the hospitals are 
exposed to often dangerous conditions.
    In one of the most egregious examples, 14-year-old Sarah Crider, 3 
months after being admitted to Georgia Regional Hospital in Atlanta for 
mental illness, died after becoming ``lethally constipated'' while in 
the hospital. Sarah had been prescribed an assortment of psychotropic 
medications, many of which commonly caused constipation. One the day 
before her death, Sarah complained of stomach pain and had nausea and 
vomiting. An autopsy found that her colon was stretched almost to the 
point of bursting, and that she died of sepsis, an infection in her 
bloodstream. An investigation found that her impacted bowels had 
developed over time and could have been detected by more careful 
medical care.
    In addition, our investigation found a number of other examples of 
dangerous conditions, including:

     In 2009, the State failed to adequately supervise an 
individual who had killed previously. The individual assaulted and 
killed another individual in the hospital.
     In 2008, hospital staff failed to intervene in a fight 
between individuals. One of the individuals was knocked unconscious and 
died a few days later from blunt force trauma to the head.
     In 2009, staff failed to adequately supervise an 
individual who raped another individual.
     In 2009, an individual committed suicide by tipping his 
bed up and hanging himself from the upended bed. The Justice 
Department's experts had repeatedly warned hospital staff during on-
site visits of the dangers posed by these beds that were not bolted to 
the floor.
     In January of this year, the State failed to adequately 
supervise an individual who expressed suicidal thoughts the day before 
she committed suicide.

    The Division is currently in settlement negotiations with the State 
of Georgia.
    Last month, the Division filed suit against the State of Arkansas 
for systematically violating the ADA by segregating residents in six 
State-run institutions for individuals with developmental disabilities. 
While confined in the Arkansas Human Development Centers (HDCs), the 
1,100 residents of the facilities have extremely limited access to 
community activities and amenities, as well as limited opportunities to 
interact with people without disabilities. The lawsuit also alleges 
that the State restricts development of adequate community supports and 
services to enable individuals to leave the HDCs and to offer viable 
alternatives to many individuals who are at risk of inappropriate 
institutionalization.
    As the Division's complaint notes, the current wait list in 
Arkansas for home and community-based waiver services for individuals 
with developmental disabilities who are seeking community alternatives 
to institutionalization totals approximately 1,400 people. This wait 
list moves at an extremely slow pace, with most people waiting several 
years for community services. Individuals currently at the bottom of 
the list will likely wait more than a decade to receive community 
services. Yet, the State is actively expanding its HDC institutions at 
the cost of developing community alternatives.
    Also last month, in Florida, the department filed a statement of 
interest to support Michele Haddad's lawsuit against the State for 
violations of the ADA's integration mandate. Haddad, a 49-year-old 
woman with a spinal cord injury resulting from a motorcycle accident, 
has quadriplegia and uses a wheelchair. Her lawsuit alleges that 
Florida fails to provide community-based services to Medicaid-eligible 
individuals with spinal cord injuries who are at risk of 
institutionalization. Instead, the State will fund those services only 
after an individual relinquishes his or her ties to the community and 
enters a nursing home. Haddad has successfully resided in the community 
since 2007, but is at risk of entry into a nursing home due to changes 
in her caregiver situation. Haddad, who has been on the waiting list 
for services for 2 years, notified the State of her increased need for 
services, but was told that community services would only be available 
if she was willing to enter a nursing home for 60 days. The United 
States' filing supports Haddad's complaint and declaration for a 
preliminary injunction against Florida.
    In New York, the Justice Department intervened in Disability 
Advocates Inc. v. David A. Paterson, ET al., a case brought by a 
protection and advocacy organization to challenge the State's placement 
of persons with mental disabilities in Adult Homes. The Department 
filed a brief in support of the advocates' proposed remedial plan to 
require the State to create 6,000 new community-based placements, and 
against the State's proposed plan to create approximately 1,000 new 
placements.
    It's important to note that enforcing Olmstead is not about placing 
every individual in a community-based setting regardless of their 
disability or their desire. The Olmstead decision makes clear that 
States have an obligation to provide services to individuals with 
disabilities in the most integrated setting appropriate to their needs.

            YEAR OF COMMUNITY LIVING: ADMINISTRATION EFFORTS

    As I said, this work is a priority for the Civil Rights Division, 
and we are committed to aggressive enforcement of Olmstead so that we 
can build upon progress made over the last 11 years. But our work is 
only one piece of a larger, Administration-wide effort to make the 
promise of Olmstead a reality for individuals with disabilities 
nationwide. Real reform requires a holistic approach. As a lifelong 
public servant, I recognize that the most vexing problems a government 
faces are those that require unprecedented inter-agency collaboration 
and coordination. The unnecessary and illegal institutionalization of 
individuals with disabilities who would be better served, and better 
able to contribute to their communities, if they were provided services 
in integrated settings, is one of those problems.
    This is why last year, on the 10th anniversary of Olmstead, 
President Obama proclaimed the Year of Community Living. The Community 
Living initiative is marked by unprecedented collaboration so that we 
can be sure that as we enforce the ADA and the Olmstead decision, we 
are cultivating systemic, sustainable reform.
    In our work at the Department of Justice, this collaboration helps 
us to craft consent decrees that lead to such systemic reform. By 
working with the Department of Health and Human Services and the 
Department of Housing and Urban Development, for example, we can ensure 
that the remedies laid out in a consent decree to increase community-
based placements will have adequate financing, and that there will be 
adequate community infrastructure.
    For this reason, the HHS Office for Civil Rights has been at the 
negotiating table with us as we work toward an agreement in Georgia. We 
have relied heavily on the technical assistance that the Substance 
Abuse and Mental Health Services Administration and the Centers for 
Medicare and Medicaid Services can provide, because that assistance 
will be critical in ensuring that any settlement reached leads to real, 
sustainable reform.
    Meanwhile, those agencies have been actively pursuing strategies 
over the last year as part of the Year of Community Living. Last month, 
Cindy Mann, Director of the Center for Medicaid, CHIP, and Survey and 
Certification at CMS, sent a letter to State Medicaid Directors 
outlining an array of programs, both existing and new, to assist States 
in their efforts to provide more services in community settings. The 
services outlined include various technical assistance options, 
including a new program to assist States as they work to evaluate 
individuals with mental or developmental disabilities to determine the 
most integrated setting appropriate for their needs; a partnership 
between HHS and HUD that includes funding availability for Housing 
Choice Vouchers; and a variety of other resources and programs.
    Meanwhile, HUD has provided tens of millions of dollars over the 
last year to fund housing choice vouchers for non-elderly individuals 
with disabilities, including funds specifically targeted to providing 
assistance for individuals transitioning out of institutional settings.
    Additionally, the Affordable Care Act that you enacted earlier this 
year includes a number of provisions to provide more opportunities for 
individuals with disabilities to receive services in community-based 
settings. These include an extension of the Money Follows the Person 
demonstration through 2016, improvements to the Medicaid HCBS State 
plan option and other provisions to help States meet their Olmstead 
obligations. HHS plans to provide further guidance on these and other 
provisions from the Affordable Care Act.

                            LOOKING FORWARD

    Next month, we will celebrate the 20th Anniversary of the Americans 
with Disabilities Act, a landmark civil rights law that has improved 
the lives of so many people with disabilities, and has changed 
perceptions and stereotypes and lessened the stigma of disability.
    But, as we celebrate the progress made in the last two decades, we 
must think about what the next 20 years of ADA enforcement will look 
like.
    Institutionalization has long been the default choice for providing 
services to people with disabilities. In the 11 years since Olmstead, 
this has begun to change, but too many individuals in too many States 
continue to live in institutions when they could be better served in 
the community.
    The Obama administration is committed to helping more people access 
community-based services, and by working collaboratively as a Federal 
Government and coordinating with State and local governments, we can 
accomplish real, systemic, sustainable change in the way we approach 
services and treatment.
    For the Department of Justice, turning the promise of the Olmstead 
decision into a reality for individuals with disabilities across the 
Nation has become a major component of ADA enforcement. Our success in 
that endeavor will be a determining factor in whether we will be able 
to celebrate more great progress in the next two decades of ADA 
enforcement.

    The Chairman. Thank you very much, Mr. Perez.
    Now we'll turn to Ms. Mann. Welcome, Ms. Mann. Please 
proceed.

 STATEMENT OF CINDY MANN, J.D., DIRECTOR, CENTER FOR MEDICAID, 
  CHIP AND SURVEY AND CERTIFICATION, CENTERS FOR MEDICARE AND 
MEDICAID SERVICES, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

    Ms. Mann. Good afternoon, Chairman Harkin, Ranking Member 
Enzi, and members of the committee. Thank you for the 
invitation to discuss the Centers for Medicare and Medicaid 
Services' role in encouraging and supporting community-based 
services and supports for people in need of long-term care. I 
want to begin by acknowledging the enormous and positive 
changes that have taken place in this country, brought about by 
the Americans with Disabilities Act and you in particular, 
Senator Harkin, for all you've done, both to bring about that 
act and to improve the way that Medicaid is able to serve 
people with disabilities.
    The Olmstead decision marked the beginning of a fundamental 
change in how Medicaid serves people with disabilities. We have 
made enormous progress since June 22, 1999. To give you a 
little bit of the dimensions of the change that has occurred 
since the Olmstead decision, consider the following. Annual 
Medicaid expenditures for community-based services have 
increased from a little over a quarter of total Medicaid long-
term care spending to almost 45 percent of those expenditures.
    Today more than half of Medicaid's beneficiaries who are 
receiving long-term care services are receiving that care in 
community settings. While real and tangible progress has been 
made, much more needs to be done. Far too many people are 
waiting for the services they need in the community. There are 
1.6 million Americans still receiving services in institutions, 
many of whom would prefer to receive services at home. Perhaps 
most worrisome is that, with State budget constraints, there's 
a real danger that the progress that's been achieved over the 
past 11 years will be slowed or even rolled back.
    As the largest single source of funding for long-term care 
services and supports, Medicaid plays a unique role in the 
context of the Americans With Disabilities Act. Our mission in 
this area is to work aggressively to address the inherent 
statutorily based institutional bias within the Medicaid 
program by expanding and improving the opportunities for people 
to receive needed services in the community using all the tools 
available to us.
    Many people need and benefit from receiving their care in 
an institutional setting. But no one should have to enter an 
institution and relinquish their ability to participate in 
community life to get the medical care they need if those 
medical services could be provided in an appropriate manner in 
the community.
    Working with the disability and aging communities as well 
as with States, CMS is currently building upon several existing 
initiatives to strengthen the choices available to people as we 
also begin to implement the new grants and State options 
enacted as part of the Affordable Care Act. Together we believe 
these provisions will do much to allow Medicaid beneficiaries 
living with disabilities to have the opportunity to receive the 
care they need in the community.
    Our work at CMS is part of a broader initiative. Senator 
Enzi noted the Year of Community Living that has been 
established first by the President, followed by the Secretary 
of HHS, Secretary Sebelius. That initiative was designed to 
bring collaboration and it takes a lot of collaboration across 
Federal agencies to try and identify and eliminate some of the 
barriers that exist.
    One of those key barriers, of course, is in the area of 
housing. We have been working particularly aggressively with 
HUD over the last year to identify ways to make vouchers and 
housing assistance available to people so that they have a 
better opportunity to receive care in the community. It's clear 
that for real progress to be made more is needed than just 
health care delivery and financing strategies, although those 
are obviously important.
    Focusing on particularly how CMS and the Medicaid program 
can help States find solutions, on May 20, 2010 we issued a 
letter to State Medicaid directors underscoring the importance 
of continuing to work to make progress consistent with the 
Olmstead decision. We outlined several of the options that are 
available to States. Some of them are new options, some of them 
have been established over the last 10 years. They include new 
State plan options that allow States to serve people in the 
community without going through waivers, aging and disability 
resource center programs designed to streamline access to care, 
and person-centered hospital discharge planning, which helps 
bring in families and consumers to the planning process to find 
appropriate community-based alternatives to institutional care.
    This is one of the examples of ways in which we think that 
improving quality for people can also reduce costs for 
Medicaid, for State and Federal Government, certainly by 
avoiding unnecessary institutional stays after hospital 
discharge.
    The May 20 letter also referenced the learnings from the 
Money Follows the Person demonstration grants, which, as you 
noted, Chairman Harkin, Congress just extended and expanded. 
I'm pleased to announce today that we are issuing a new 
guidance on the MFP provisions that are in the new law to 
advise States of what those provisions are and to advise them 
that we will be doing a grant solicitation for the new dollars 
made available in the Affordable Care Act later this summer. We 
expect to do so in July. We're very excited to work with the 
States that already have MFP grants to expand their capacity, 
as well as to work with new States.
    We are very excited also about implementing several of the 
new provisions in the Affordable Care Act. The Community First 
Choice Option, effective, as you noted, on October 2011, allows 
States to cover home and community-based attendant services and 
supports, operating under a consumer's direction and through a 
person-centered plan of care.
    Significantly, you have provided an additional 6 percentage 
point increase in State matches to make sure that States have 
the ability to move forward. Thank you, chairman, for your 
leadership in pushing forward the Community First Option.
    We also have additional Federal match for the balancing 
incentive program to encourage States that haven't made very 
much progress to try and move forward as some other States have 
done.
    I'll close my remarks by noting another important 
anniversary that is coming up. Of course, we all know that July 
26 will mark the 20th anniversary of the ADA. Much progress has 
been made over the past 20 years, but, as everybody, I think, 
testifying before you today would agree, the work remains 
unfinished.
    I can assure you that CMS is working and listening to 
people living with disabilities, working closely as well with 
States and our colleagues at the Department of Justice--he's 
also a rock star--and the other agencies, and taking a 
leadership role in assisting States to meet their obligations 
under ADA and the Olmstead decision.
    We thank you for all that Congress and particularly the 
leadership of this committee has done, especially in this area. 
It is hard to imagine any work more important. Thank you.
    [The prepared statement of Ms. Mann follows:]

                 Prepared Statement of Cindy Mann, J.D.

    Chairman Harkin, Ranking Member Enzi, and members of the committee, 
thank you for the invitation to discuss the Centers for Medicare and 
Medicaid Services' (CMS) role in encouraging and supporting community-
based services and supports for individuals in need of long-term care. 
The Medicaid program plays a critical role in assuring that these 
services and supports are available and in promoting State efforts to 
comply with the Americans with Disabilities Act (ADA) and the U.S. 
Supreme Court's decision in Olmstead v. L.C. Working with the 
disability and aging communities, as well as States, CMS is currently 
building upon several current initiatives and looks forward to 
expanding State options that will ensure that Medicaid beneficiaries 
living with disabilities have the opportunity to receive the care they 
need in the community.
    I would like to begin by commending the work of Chairman Harkin and 
this committee on the improvements in this area that are part of the 
recently enacted Affordable Care Act (ACA). Your tireless commitment to 
improving the lives of Americans with disabilities, as demonstrated by 
your instrumental contributions to passage of the ADA, manifested 
itself again in the inclusion of the Community First Choice Option 
program and other notable improvements to the Medicaid program within 
this important legislation.
    Since the passage of the ADA and the Olmstead decision, the Nation 
has made great progress toward improving and expanding community living 
opportunities for people living with disabilities. Over the past 10 
years, funding for long-term care services has grown at an average 
annual rate of 6.3 percent, while spending on community-based long-term 
services and supports has increased by an average of 11.8 percent per 
year from $17 billion in 1999 to $52 billion in 2009.\1\ Annual 
Medicaid expenditures for community-based services have increased from 
a national average of only 27 percent of total Medicaid long-term care 
expenditures to almost 45 percent of long-term care expenditures over 
the period.\2\ More than half of all Medicaid LTC beneficiaries now 
receive services in community settings.\3\ However, the demand for 
community services continues to grow, and many individuals in need of 
these services struggle without them. And while the number of people 
served in community settings has grown, there are still over 1.6 
million Americans receiving services in institutions, many of whom 
would prefer to receive services at home; and many more individuals are 
at risk of institutionalization, waiting for access to community-based 
services. In addition, on-going State budget constraints threaten the 
progress that has been achieved, raising concerns about compliance with 
the ADA and Olmstead. In response to State budget constraints, however, 
the Administration has requested $25.5 billion in its fiscal year 2011 
budget submission to Congress for a 6-month extension of the Recovery 
Act's temporary FMAP increase.
---------------------------------------------------------------------------
    \1\ Thomson Reuters analysis of CMS Form 64 Reports, 2010.
    \2\ Thomson Reuters analysis of CMS Form 64 Reports, 2010.
    \3\ Thomson Medstat, Medicaid Long Term Care Data Chartbook, CMS, 
2003.
---------------------------------------------------------------------------
    In this context, we are very committed to moving forward with 
existing and new initiatives. Our commitment at CMS is, of course, 
shared Administration-wide. In June 2009, President Obama announced the 
``Year of Community Living'' to mark the 10th anniversary of the 
Olmstead v. L.C. decision. In that decision, the U.S. Supreme Court 
affirmed that States are obligated to serve individuals in the most 
integrated setting appropriate to their needs, and held that the 
unjustified institutional isolation of people with disabilities is a 
form of unlawful discrimination under the ADA.
    Following the President's announcement, Secretary Sebelius 
established the Community Living Initiative, led by the Department of 
Health and Human Services (HHS), but designed to coordinate the efforts 
of several Federal agencies, including CMS, to implement comprehensive 
solutions that address barriers to community living for individuals 
with disabilities and older Americans. Under this initiative, HHS is 
partnering with the Department of Housing and Urban Development (HUD) 
to improve access and affordability of housing for people with 
disabilities and older Americans with long-term care needs. In addition 
to the work of the Community Living Initiative to remove barriers and 
provide better options for community integration, the HHS Office for 
Civil Rights is collaborating with the U.S. Department of Justice (DOJ) 
to advance enforcement of the ADA under the directive of the Olmstead 
decision.
    As you also know, Congress included several mechanisms in the 
Affordable Care Act to address gaps in the availability of community 
services for individuals with disabilities. The passage of the ACA 
provides new and expanded opportunities to serve more individuals in 
home and community-based settings and adds to the tools already 
available so States can implement the integration mandate of the ADA as 
required by the Olmstead decision.
    As we work within the broad scope of the Community Living 
initiative and the new authorities provided under the ACA, CMS is also 
deepening its efforts in this area. On May 20, 2010, CMS issued a 
letter to all State Medicaid Directors (SMD) to underscore the 
importance of continuing to make progress consistent with the Olmstead 
decision and to provide States with information on both new and 
existing tools for community integration and to reiterate our support 
for community living options for Medicaid beneficiaries living with 
disabilities. I would like to take this opportunity to discuss several 
of these existing approaches in more detail and also to touch on 
exciting new opportunities under the ACA.

                     WAIVER AND STATE PLAN OPTIONS

    The core mechanism that States have used to promote access to 
community-based services and supports for Medicaid beneficiaries is 
through the Home and Community-Based Services (HCBS) waiver. We are 
continuously reviewing and assessing our policies and practices to 
identify ways in which the Medicaid program can assist States in 
achieving the requirements of the ADA, including assisting States in 
efforts to serve more individuals in community settings. Forty-eight 
States are operating over 300 HCBS waivers that serve over a million 
individuals with disabilities. In 2009, HCBS services under both State 
plans and waiver programs comprised 45 percent of Medicaid spending on 
long-term care. This demonstrates impressive growth in community-based 
options of approximately 13 percent since 2008 alone, while overall 
spending on community options has tripled since 1999.\4\
---------------------------------------------------------------------------
    \4\ Thomson Reuters analysis of CMS Form 64 Reports, 2010.
---------------------------------------------------------------------------
    We must acknowledge, however, that there are significant 
disparities across States in the level of investment in community 
services. The percent of Medicaid long-term care funding directed 
toward HCBS varies among States from 14 to 75 percent. In addition, the 
HCBS investment varies significantly among different target 
populations. The opportunities afforded under the ACA hold great 
promise for all States to move forward in expanding HCBS options for 
all individuals with long-term care needs.
    The State plan options under Sections 1915(i) and 1915(j) of the 
Social Security Act (the act) provide States with opportunities to 
serve individuals in the most integrated setting without the 
requirement of a waiver. Section 1915(i), which permits States to 
provide HCBS as a State plan option, allows States to serve individuals 
in the community without linking the benefit to either a current or 
future need for institutional care. As of today, five States have taken 
up the 1915(i) State plan option: Iowa, Wisconsin, Washington, Nevada, 
and Colorado. States have found the section 1915(i) option to have 
particular promise for improving access to community-based services for 
individuals with mental and substance use disorders, a group which has 
been an underrepresented element of previous waiver populations. With 
the reforms enacted by the ACA, the State plan option offers even 
greater promise as a tool to prevent institutionalization and to meet 
mental health service needs in additional States. The ACA has also 
provided for broader financial eligibility rules and a more expansive 
array of services.
    Section 1915(j) allows States to design self-directed personal 
assistance or other HCBS for individuals who would otherwise receive 
State plan personal care or HCBS waiver services. While not changing 
the services available to individuals, 1915(j) gives States flexibility 
in offering individuals the opportunity to exercise maximum choice and 
control over their services. States offering services under 1915(j) 
authority include: Arkansas, Florida, New Jersey, California, Oregon, 
Alabama and Texas.

                 MONEY FOLLOWS THE PERSON (MFP) GRANTS

    CMS also operates the Medicaid Money Follows the Person (MFP) grant 
program, which was authorized in the Deficit Reduction Act of 2005. MFP 
assists States in their efforts to reduce reliance on institutional 
care, develop community-based long-term care opportunities, and 
transition individuals living in institutions to community living. MFP 
provides enhanced Federal matching funds to serve individuals who move 
from institutional care to community integrated LTC settings. 
Originally set to expire next year, the MFP program was extended 
through September 30, 2016 under Section 2403 of the ACA, with an 
additional appropriation of more than $2 billion. The ACA also modified 
the time Medicaid beneficiaries must reside in institutions so those 
individuals who do not reside in a facility for a long-term stay will 
qualify for MFP at 3 months rather than 6 months. Now in its third 
year, the MFP program has made it possible for almost 6,000 people to 
live more independent lives by providing necessary supports and 
services in the community. Currently, 29 States and the District of 
Columbia have MFP programs. The extension and expansion of MFP under 
the ACA will allow current MFP States to assist more individuals to 
move to community settings and allow additional States to initiate MFP 
programs.
    We recognize that much more can be done through this demonstration 
authority to expand its reach to more beneficiaries who could benefit 
from this approach. The extension and expansion of MFP under the ACA 
will allow current MFP States to assist more individuals to move to 
community settings and allow additional States to initiate MFP 
programs. CMS is finalizing a letter to State Medicaid Directors 
providing guidance on the MFP extension and expects to announce a new 
MFP grant solicitation this summer.

              AGING AND DISABILITY RESOURCE CENTERS (ADRC)

    The Aging and Disability Resource Centers (ADRC) program, a 
collaborative effort of the Administration on Aging (AOA) and CMS, is 
designed to streamline access to long-term care services and supports. 
ADRCs play a critical role in supporting health and long-term care 
reform by improving the ability of State and local governments to 
effectively manage the system, monitor program quality, and measure the 
responsiveness of State and local systems of care. ADRCs now operate in 
at least one community in each of the 50 States and in four 
Territories. There are currently more than 200 ADRC sites across the 
Nation. A growing number of ADRCs have Medicaid applications available 
on the Internet with seven of these allowing consumers to complete and 
submit the application online. The ACA provides the opportunity for 
CMS, in collaboration with its HHS partners, to expand the ADRC program 
and similar models to ensure streamlined access to information and 
service supports.
    The Person-Centered Hospital Discharge Planning Model Grants, 
created under the ADRC program, provides another avenue to strengthen 
person-centered planning and community-based long-term care. CMS 
awarded 10 of these grants between 2008 and 2009, totaling 
approximately $12 million. These grants are designed to assist States 
in developing hospital discharge planning structures and processes that 
will place greater emphasis on involving consumers and their families 
in after-care plans, including community-based alternatives to 
institutional care. Grantee efforts to date include: development of 
discharge planning checklists; patient and caregiver information kits 
and hospital staff training webinars; enhancing online resource 
directories; developing electronic referral, application, and tracking 
systems; and employing transition coaches to follow-up with individuals 
once they are discharged from the hospital back into the community.
    CMS looks forward to continuing to work closely with the AOA on the 
expansion of the ADRC program under the provisions of the ACA. 
Improving the hospital discharge planning process and enhancing 
community-based long-term care options are essential elements of an 
effective community-based long-term care system.

                       NEW INFRASTRUCTURE REFORMS

    In addition to the initiatives described above, the ACA created new 
grant funds and enhanced Medicaid financing to support State efforts to 
create more balanced long-term care services and support systems. The 
new authorities provided by Congress under the ACA will allow CMS to 
sustain and expand Federal support for States to provide long-term care 
services in a community setting.
    One provision in the ACA, known as the Community First Choice 
Option, establishes a new Medicaid State Plan option, effective October 
1, 2011, to allow States to cover home and community-based attendant 
services and supports for individuals with incomes not exceeding 150 
percent of the Federal poverty level (FPL) or, if greater, the income 
level for an individual who has been determined to require an 
institutional level of care. It also requires States to make such 
services and supports available to individuals under a person-centered 
plan of care for purposes of assisting them in accomplishing activities 
of daily living, instrumental activities of daily living, and health-
related tasks through hands-on assistance, supervision, or cueing. 
States are provided an additional 6 percentage point increase in 
Federal Medicaid matching funds for services and supports provided to 
such individuals. This increased match rate is a strong incentive for 
States to re-orient spending to sustain these programs. Thank you, Mr. 
Chairman, for your leadership on the Community First Choice Option.
    Moreover, we hope that in this time of State budgetary constraints, 
there will be great interest in the provisions that offer States 
additional resources to effectuate widespread changes to their long-
term care support systems to better serve people with disabilities and 
chronic conditions. The increased Federal match offered under the 
Balancing Incentive Program and the Health Home Initiative will not 
only expand access to key home and community-based services, but also 
provide incentives for States to build lasting infrastructure to 
integrate behavioral and physical health, improve care coordination, 
and offer health promotion services for people with chronic conditions.

                  AVAILABILITY OF TECHNICAL ASSISTANCE

    CMS also currently offers a variety of resources for technical 
assistance to States regarding the design and operation of their 
Medicaid programs. While we understand that States face unprecedented 
budget shortfalls, we also recognize that the Medicaid program provides 
strong partnership opportunities between CMS and States to support 
community integration for people with disabilities. As part of this 
partnership, CMS is committed to providing targeted technical 
assistance to States to help them meet their obligations under the ADA. 
Specifically, CMS will, at the request of a State, work with the State 
to identify the Medicaid coverage, reimbursement and service delivery 
options available to increase a State's system capacity to serve 
individuals in the community. Technical assistance also can help 
identify and support development of the strategies States can employ to 
ensure that services meet the needs and preferences of each individual.
    CMS offers technical assistance through a number of vehicles. The 
National Quality Enterprise (NQE) is designed to assist States in 
developing and improving the structures to ensure the health and 
welfare of individuals served through HCBS waivers and State plan 
options. The NQE, which provides assistance at no cost to States, is a 
valuable resource that States can use to design and improve their 
quality improvement systems.
    Another source of technical assistance is provided through the MFP 
Rebalancing Demonstration. This aspect of the MFP demo provides direct 
technical assistance to participating States to reduce reliance on 
institutional care while developing community-based long-term care 
opportunities, enabling the elderly and people with disabilities to 
fully participate in their communities. In addition, CMS supports the 
ongoing operation of the National Direct Service Workforce (DSW) 
Resource Center. The DSW Resource Center supports efforts to improve 
recruitment and retention of direct service workers who help people 
with disabilities and older adults to live independently and with 
dignity. This Resource Center brings together the Nation's premier 
resources on the topic of Direct Support Workforce and provides State 
Medicaid agencies, researchers, policymakers, employers, consumers, 
direct service professionals, and other State-level government agencies 
and organizations easy access to information and resources they may 
need about the direct service workforce. These resources, which include 
web-based clearinghouses, technical experts, training tools and more, 
are designed to address the full range of DSW consumer populations.
    Additionally, CMS has published a technical assistance guide, 
entitled Long Term Services and Supports in a Managed Care Delivery 
System, which describes the various Medicaid authorities and structures 
that States can use to enhance the availability of HCBS within managed 
care delivery systems. These managed care delivery systems allow for 
the use of capitation payments with both institutional and HCBS 
services in a global budget, where the resources available to support 
an individual can follow the individual wherever they choose to receive 
their services. CMS is working to ensure that managed care arrangements 
encompassing long-term services and support include all necessary 
safeguards and protections to ensure the health and welfare of 
individuals served.

  IMPLEMENTATION OF PREADMISSION SCREENING AND RESIDENT REVIEW (PASRR)

    Another mechanism currently available to States is the Preadmission 
Screening and Resident Review (PASRR) process. Congress developed the 
PASRR program to prevent inappropriate admission and retention of 
people with mental disabilities in nursing facilities. Under Federal 
requirements, States must assure that individuals with mental 
disabilities or developmental disabilities being considered for 
admission to a nursing facility are evaluated through the PASRR process 
to determine the most integrated setting that can meet their needs. CMS 
has established the new National PASRR Technical Assistance Center, 
which provides technical assistance to States, at no cost, to 
facilitate this reform activity. PASRR is a powerful tool for diversion 
from institutions, and the resident review elements of PASRR are 
important tools to help encourage transitions to the community.

 ACCESS TO AFFORDABLE HOUSING AS A MEANS TO MAXIMIZE OPPORTUNITIES FOR 
                            COMMUNITY LIVING

    The lack of accessible and affordable housing continues to be an 
obstacle to serving individuals in the most integrated setting. As part 
of the Community Living Initiative, HHS has partnered with HUD to 
improve access to affordable housing for people with disabilities. HHS 
and HUD collaborated to provide housing support for non-elderly persons 
living with disabilities to live productive, independent lives in their 
communities rather than in institutional settings. HUD is offering 
approximately $40 million to public housing authorities across the 
United States to fund approximately 5,300 Housing Choice Vouchers for 
non-elderly persons with disabilities, allowing them to live 
independently. HHS will use its network of State Medicaid agencies and 
local human service organizations to link eligible families to local 
housing agencies who will administer voucher distribution.
    Of the 5,300 vouchers set aside as part of this program, up to 
1,000 will be specifically targeted for non-elderly individuals with 
disabilities currently living in institutions but who could move into 
the community with assistance. The remaining 4,300 may be used for this 
purpose also, but are targeted for use by non-elderly disabled families 
in the community to allow them to access affordable housing that 
adequately meets their needs. HUD expects to have funding awards ready 
before the end of 2010.

                            LOOKING FORWARD

    July 26 will mark the 20th anniversary of the enactment of the ADA. 
Much progress has been made over the past 20 years to improve the 
quality of life for individuals with disabilities in the United States, 
but the work remains unfinished. CMS recognizes the significant 
progress made since the passage of the ADA and the Olmstead decision, 
but we strongly believe that more can be done with the tools provided 
to us, despite the challenges that Medicaid beneficiaries--who live 
with disabilities, as well as States--face in the current uncertain 
economic and fiscal climate. I assure you that CMS will be taking on a 
leadership role both in implementing the new opportunities provided by 
the Affordable Care Act, and also in assisting all States in meeting 
their obligations under the ADA and the Olmstead decision. We intend to 
capitalize on this opportunity by maximizing existing resources and we 
look forward to working with States and the Congress in the future to 
continue the vital work of improving the quality of life for 
individuals living with disabilities in this country.

    The Chairman. Thank you very much for your statement. Thank 
you both, and thank you both for your great work in this area.
    We'll start a round of 5-minute questions. Now, basically I 
just want to talk to you both about Olmstead. I, like you, Mr. 
Perez, I just thought this would be sort of self-actuating, 
that things would just move. And we've watched over the 
intervening 11 years. On the good side, we have moved ahead. As 
Ms. Mann said, we're up to about 45 percent now, I think, if 
I'm not mistaken.
    But still there are so many places where--I think you even 
pointed out in your written testimony, yours maybe or Ms. 
Mann's--States are still building institutions. They're still 
investing in building institutions, when clearly the direction 
is just the opposite. What is it? What has been the biggest 
obstacles to getting people--we have the Money Follows the 
Person, and yet--and we know we have good data to show that 
States really--it's cheaper. It really is more cost-effective 
to support someone, let's say with 8 hours a day of attendant 
services, than it is to give them 24 hours a day care in a 
nursing home, or maybe even 4 to 6 hours. Maybe it's that small 
intervention even in the workplace.
    So from the standpoint of cost effectiveness, forgetting 
just the humanity side of it, why don't States see this? Why 
aren't they moving ahead more aggressively? What's been the 
holdup? I'm just trying to figure this out. What do you see as 
the biggest holdup in why States haven't moved more 
aggressively?
    Mr. Perez. That's the $64 million question, Mr. Chairman. 
When I started this job as AAG, we went around and did a lot of 
listening tours internally and elsewhere and I would ask, ``Why 
are you doing something this way?'' And we got the answer, 
``Because that's how we've always done it.'' If I were to sit 
there and look at why we haven't made much progress, it's 
because that's how it's always been done.
    It doesn't have to be that way. I had the privilege of 
working in the State of Maryland as a State cabinet official. 
One thing I would observe from that vantage point and from the 
vantage point at OCR from 10 years ago was that oftentimes when 
we were doing our work we were introducing various State stove 
pipes to each other, because in order to effect the systems 
change that you're describing you need to bring a number of 
different agencies to the table, both at a Federal level, which 
we've been doing and I think have been successful at, and 
equally importantly at the State level.
    I won't name the State, but I vividly remember sending a 
letter out post-Olmstead and the decision says the best way to 
comply is to develop a comprehensive, effectively working plan 
for moving people with disabilities into the community. And we 
offered assistance in the development of that plan. When we had 
that first meeting, we were quite literally introducing State 
employees to each other.
    So the stove piped nature of the delivery of these services 
often creates barriers to the prompt transformation. Also, all 
the wonderful programs that Cindy Mann administers are, 
``waiver programs.'' So what that means is community is the 
exception, institutionalization is the rule. So that ethic and 
paradigm has pervaded for a long time.
    So because we've always done it like this and because of 
the structures of State governments, I think it ends up being 
the way it is, although it's not the way it should be.
    The Chairman. Ms. Mann.
    Ms. Mann. Let me offer some additional observations. As you 
noted, we have not seen a real decrease in the numbers of 
people in institutions. So States don't see it as necessarily a 
zero sum game, but as they are increasing home and community-
based services they see that they are adding more people to the 
long-term care system, and I think they are, particularly in 
these days, very focused on the cost.
    So while the per-person cost of serving somebody in the 
community is certainly less than serving somebody in the 
institutions, the number of people needing services is growing.
    The Chairman. What we call ``the woodwork.''
    Mr. Perez. The woodwork.
    Ms. Mann. The woodwork. Now, there is certainly a dispute 
as to whether that woodwork is really prohibitively expensive 
over time, that if you work your way through--in fact, you will 
end up saving dollars, and there are certainly some studies to 
that effect. But that certainly is the concern, and I would say 
cost, fear of the cost anyway, is a considerable barrier.
    Housing is a real barrier as well. We have certainly seen 
that in the context of implementing MFP finding and assuring we 
have appropriate housing available that's affordable for people 
is a particular problem in rural communities--finding housing 
that's also attached close enough to transportation options for 
people.
    The Chairman. And housing that is accessible.
    Ms. Mann. Housing that is accessible, that's right, and 
that allows somebody to participate in community life, so that 
it's not isolated housing, but housing that allows people to 
get connected to the job and be connected to their families.
    We have some workforce issues, and I think the new 
Affordable Care Act gives us some new tools and some new focus 
on workforce issues. But we need to do more in that area as 
well.
    I will underscore I think, though, where Tom went, which is 
that it can be done, it has been done. It is not easy, but with 
persistence, with just clear leadership, I think we have seen 
many States lead the way. So we're very much interested in--it 
is not impossible at all. It is, in fact, very possible and we 
need to lead the way.
    The Chairman. I'd be interested, and I'm sure I speak for 
Senator Enzi too, that we'd be interested in seeing those 
States that have really done this, have done a good job. How 
have they done this and could they be a template for others? So 
if you have examples, we'd like to see them.
    Senator Enzi.
    Senator Enzi. Thank you, Mr. Chairman. That's exactly the 
question I wanted to start off with.
    First I wanted to thank both of our witnesses for their 
tremendous enthusiasm and knowledge. But I wanted to see if 
either of you could name a few States that we should be looking 
at as shining examples of the Olmstead implementation, and what 
do you think makes those States successful?
    Ms. Mann. There are a couple States that come to mind. 
Oregon has been a real leader in this area. Minnesota's been a 
real leader in this area--just random States I picked.
    [Laughter.]
    But it's absolutely true. And it is not an overnight 
occurrence. These are States that have struggled for the last 
decade, through good times and in bad, and been very determined 
that this is the direction that they're going in.
    I think it also underscores the point you both made and 
that Tom made as well, that it is a bipartisan commitment, but 
it takes a real commitment to think about the housing issues, 
to think about the workforce issues, and to decide this is the 
direction we're going to go to have a clear goal in mind and to 
get there.
    We'd be happy also to provide some case studies. We've 
certainly been doing this in the context of providing technical 
assistance to States, here's what's been working, here's what's 
not been working. To get States together and share their 
experiences has also been a very powerful approach to move 
other States forward.
    Mr. Perez. I agree with everything that Cindy said. I would 
note that oftentimes what we see is that there are States who 
are successful moving certain populations of people with 
disabilities. For instance, some States have been very 
successful in moving people with developmental disabilities 
into community-based settings.
    But oftentimes what we'll look at, if we look at other sub-
populations of people with disabilities who can live in the 
community, that program is more problematic in terms of moving 
people out. My friendly amendment to your question, Senator, 
would be to not only look in the aggregate at what States are 
doing, but then to disaggregate so that we understand some of 
the work that's being done with sub-populations, recognizing 
that sometimes it has the consequence of making the waiting 
list longer for other people with different forms of 
disability.
    I would note finally also that we both had the privilege in 
former lives to work with the Kaiser Commission on Medicaid and 
the Uninsured, which is a nonpartisan group, with Senator 
Durenberger, Senator Mathias, and others. They have done a fair 
amount of research in this area taking a look at the world of 
waivers and the world of post-Olmstead. They did a hearing, 
Olmstead at Five, in the Senate 6 years ago, and they are a 
very good treasure trove for that sort of information.
    Senator Enzi. Thank you.
    Ms. Mann, I'd ask for you, if you have a document that you 
could share on that, what's been working and what hasn't, that 
would be very helpful in our deliberations.
    I'm from Wyoming, which is definitely a rural State. We 
only have 14 towns where the population exceeds the elevation. 
Our biggest city is 52,000. Is there a difference in the rural 
States? I think that to some degree they have more of a sense 
of community, like to keep the people close at hand, and may be 
able to service them better that way. But is there any 
particular assistance that you give to rural States in 
implementing this Olmstead when they have these capacity 
barriers?
    Ms. Mann. I think there are some particular issues that 
rural communities face. We have several technical assistance 
providers that we work with under contract, and one in 
particular focuses on those sets of issues. One of the things 
that we're working on going forward is to get some peer States 
together to talk about what's working and what's not. We 
actually have heard from States and think that there is reason 
to pull some of the rural States together so that they can 
exchange information.
    I think some of the workforce issues and the housing issues 
that we've talked about are just exacerbated often in rural 
communities. At the same time, as you said, there's a real 
strong sense of community. One of the things that I think the 
Affordable Care Act and other options that we have available to 
us allows us to work on more is family caregiving. So there are 
also solutions and opportunities that I think are particularly 
appropriate and suited for rural communities.
    Senator Enzi. Thank you. My time has run out. I will be 
submitting some questions in writing that I hope you'll answer, 
because I am interested in any shining examples as well and 
what might have caused those, as well as a number of other 
questions.
    Ms. Mann. We'd be glad to respond. Thank you.
    Senator Enzi. Thank you, Mr. Chairman.
    The Chairman. Thank you very much, Senator Enzi.
    I have in order Senator Merkley, Senator Franken, and 
Senator Hagan. So Senator Merkley, I understand Oregon has done 
a pretty good job.

                      Statement of Senator Merkley

    Senator Merkley. Thank you, Mr. Chair.
    Indeed, the ability to continue aging in place has been a 
huge emphasis in Oregon. We have one program called Operation 
Independence, which is aimed exactly at this issue, and a 
number of other approaches.
    Thank you both for your testimony. Ms. Mann, there are 
certain assumptions we have about the higher quality of life 
one has in their own setting and some of the challenges in an 
institutional setting. Those might be disorientation, self-
esteem, sense of purpose, depression, abandonment, and--maybe 
on the medical side--greater risk of infections.
    But are these comprehensively measured. Can you point to 
any studies that really allow us to get a handle on the 
disparity of quality of life between an institutional setting 
and an in-community setting?
    Ms. Mann. We can certainly look into that. We are doing a 
couple of things along those lines. First of all, we listen a 
lot to our partners in the community and what they tell us. So 
I think in some respects they're our best evidence, and the 
experiences, for example, like the gentlemen that Mr. Perez 
noted before who had been in an institution and those who had 
not.
    We are looking at and developing what the hallmarks are of 
community living. We've put out an ANPRM to try and get public 
comments about what it means to be in community living, can you 
have those hallmarks of community living in different kinds of 
settings, what kinds of settings, can you have it in a group 
home, does it need to be in your own apartment?
    These are all difficult questions, not black and white 
questions. So we're really reaching out to a very wide range of 
stakeholders to help us think exactly those questions through.
    I just wanted to note that certainly some people need to 
have some care in a nursing home setting. In the context of our 
survey and certification work on the quality of care in nursing 
homes, we are also trying to bring in a sense of quality of 
life and examine what's going on inside the nursing home as 
well.
    Mr. Perez. I would note, Senator, in connection with our 
work under the Civil Rights of Institutionalized Persons Act 
we've had a number of cases with specific institutions where 
one of the metrics we were measuring was life expectancy of 
people in that institution. In one case in particular, which 
doesn't need to be named, but we measured life expectancy in 
that institution against similar institutions and it was 
considerably lower.
    That's obviously not the only metric, but it was an 
important metric to demonstrate the challenges that were rising 
to the level of violation.
    Senator Merkley. Thank you both. I think as we seek to 
encourage more States to be aggressive in this area having 
those type of metrics will help people get their hands around 
it. Certainly the other side of it is the testimony of 
individuals and that's extraordinarily powerful in favor of 
community living.
    An issue, Mr. Perez, that you raised was that of States 
being concerned about the cost. Now, in many cases it's just a 
lot less expensive to have someone housed in a community 
setting, but not always. But how does one get their hands 
around that issue of cost in terms of the infrastructure and 
the services and so on and so forth, and are there rare 
situations where it is a lot more expensive to have a program 
that's in the community, and how does one address that in the 
context of the Olmstead Act?
    Mr. Perez. There's an ample evidence base demonstrating 
that it is cost-effective for people with disabilities to live 
in community-based settings. There have been a host of studies. 
Cindy and Mr. Chairman talked before about the woodwork effect, 
which is I think that parade of horribles that concerns States. 
I think there is a robust evidence base demonstrating that that 
is more of a hype than it is a reality.
    Under the Olmstead decision and the ADA itself, the legal 
question presented would be whether moving in this direction 
would constitute, ``fundamental alteration.'' I don't believe 
it would. Quite the contrary. And we have been working hard to 
demonstrate that this is not only humane treatment and ensuring 
compliance with the ADA, but it's in your enlightened economic 
self-interest.
    The challenge is that you have to look at this from a long-
term perspective, the long-term investments of your resources. 
All too frequently right now, with the constraints that 
confront States, long-term thinking is sometimes a little 
elusive.
    Senator Merkley. Well, thank you both very much for the 
work you're doing. Tremendous.
    The Chairman. Thank you, Senator Merkley.
    Senator Franken.

                      Statement of Senator Franken

    Senator Franken. Thank you, Mr. Chairman, for calling this 
hearing.
    A couple years ago I went to a teachers meeting and I was 
there to find out about education issues. But a teacher came up 
to me and was really panicked. She said that her brother, who 
had been in a group home for 20 years or so, was getting kicked 
out of his group home. He had developmental, mental issues or 
emotional issues, and this was his home--he lived in a group 
home, I think with four people.
    What happened in Minnesota--which you say does this well 
and maybe compared to other States we do--is they were de-
funding this. So I decided to find out more about it. What I 
learned was that to some extent we were taking people out of 
group homes that the State was paying for, counties were paying 
for, and moving them. Again, this is someone who is very 
delicate and vulnerable, and taking them out of a place that he 
had lived for 20 years. This was why this woman was panicked.
    What I found out about it was that they were de-funding 
programs and that private operators of group homes were taking 
over, and that they were spending less money. The way they 
would spend less money is to pay less for care and give shorter 
hours to the people taking care of those most vulnerable of our 
citizens. These are great people who do this, who take care of 
these people, and they don't do it for the money, but the 
people I met do it because they love doing it and it gives 
meaning to their lives.
    I heard that the private owners of these group homes were 
saying, ``OK, we don't need anyone to stay over at night,'' and 
they reduced people's hours and they reduced the care, and they 
were doing this to make money.
    I guess my question is, Ms. Mann, what can you tell me 
about private companies that cut corners and how patients 
suffer? What are we doing on this front? And Mr. Perez, you can 
answer me as well.
    Ms. Mann. Well, I think there are corners being cut in lots 
of different places. My first reaction to this story is how 
awful it is to be that person and to be that person's family 
and to be out of control, not being able to make that decision 
about what goes on in the most important aspects of their life.
    I think one of the really important ways in which we have 
to rethink how we're approaching the care and support that 
we're providing for people living with disabilities is to give 
them back an ability to control and make their own decisions to 
the fullest extent possible.
    We have seen a lot of cutbacks. We have seen cutbacks going 
on at the State level. We've had cutbacks going on in 
individual provider levels. Personal care attendant services is 
one area where we've seen cutbacks because of State budget 
cuts.
    Generally----
    Senator Franken. I'm sorry, but do you have any comments in 
particular about private companies?
    Ms. Mann. About private?
    Senator Franken. Yes.
    Ms. Mann. Generally it would be, at least under the law--
now, whether or not that was actually what was happening--it 
would be the State that would decide whether or not there's a 
different standard that the provider is putting into place. 
Now, we all know that in real life different providers apply a 
standard in different ways. So then the question is how 
aggressively is the State overseeing its different providers to 
see that there's an evenhanded application of the rules.
    Senator Franken. Mr. Perez, has this been a subject that 
you've run into at all?
    Mr. Perez. We had a case in the District of Columbia that 
we were involved in involving a private facility and we argued 
to the court--it was an ADA case--that the ADA required the 
private provider to take steps to ensure the safety of the 
individual who was residing in the group home. So we actually 
did get involved in that particular case.
    Senator Franken. That's one case, but I'm saying that as--
well, my time is up.
    Mr. Perez. It's an absolute concern, Senator, and as we 
move people into community-based settings and we build the 
community infrastructure, we are ever mindful of the need to be 
equally vigilant about oversight, because part of the answer 
perhaps to Mr. Chairman's question before of why don't they do 
this more quickly is because it's easier to oversee one 
facility in the eyes of some States than to have people going 
into 16 community-based settings, go to one place with 150 
people as opposed to 20 places with 8 people.
    Senator Franken. I'm going to end here, but I just wanted 
to tell this story, because this is one family and one person, 
but I wanted people to understand what this means to one person 
and one family.
    Thank you, Mr. Chairman.
    The Chairman. Thank you, Senator Franken. Well, the story 
of one person and one family, you can multiply that a million 
times, and that's what's happening around the country.
    Well, we just have to renew our efforts in this area. But 
before I dismiss this panel, I wanted to ask this panel one 
thing--oh, I'm sorry. Senator Hagan. I'm sorry. My gosh, I'm 
getting involved in my own thinking here.
    Sorry, Senator Hagan.

                       Statement of Senator Hagan

    Senator Hagan. You're the chairman. That's OK with me.
    But thank you, Mr. Chairman. I did want to say, this is the 
first time I've seen Mr. Perez since a very, very cold morning 
in February, I think it was 7 a.m., when----
    Mr. Perez. Greensboro.
    Senator Hagan [continuing]. For the Civil Rights Division 
of the Attorney General's Office, he helped me and several 
others cut the ribbon on the Woolworth's restaurant which is 
now a civil rights museum, where the Greensboro Four, the four 
young men from North Carolina A&T, began the sit-in movement at 
the lunch counter. So that was a very, very cold morning and it 
was certainly a great day in my State.
    Mr. Perez. That was 10 or 15 years of your leadership in 
getting that done. So I want to commend you for your 
leadership.
    Senator Hagan. It was a great day.
    And I thank you for this hearing. Mr. Perez, in your 
testimony you mentioned a young man named Paul Boyd who has had 
to remain in an institution because of long waiting lists he 
faces to access services. I think he wants to go get a master's 
degree and has issues with transportation and night classes, ET 
cetera. But we need to ensure that people like this young man 
have access to community care programs so that they can be 
productive members of society.
    I was wondering, toward that end, have there been any 
analysis of the cost of providing community care compared to 
the increased productivity among those who are disabled but 
still able to work?
    Mr. Perez. There have been and there again is a robust 
evidence base demonstrating that community-based care is cost-
effective, that you can do it and actually save States money in 
the long run. And that doesn't even take into account then the 
additions to the Federal treasury from having people with 
disabilities--and the unemployment rate, as you know, for 
people with disabilities is north of 50 percent nationally, and 
having more people employed means we have more people paying 
into our tax base.
    It's very compelling, the cost-effectiveness argument that 
can be made.
    Senator Hagan. To date have there been any analyses done on 
the costs and benefits of the Money Follows the Person 
demonstrations?
    Ms. Mann. Yes. There's been an evaluation and we can 
provide you and your office with the evaluation and what we've 
learned so far. We are constantly re-looking with our States at 
what's working and what's not and trying to look for 
improvements. We've seen pretty slow startup numbers in Money 
Follows the Person, but our numbers in 2010 are much stronger 
relative to any of the prior 3 years, and we're really hopeful 
that the extension will build on the base that's been provided 
and the learnings that have occurred, so that we can really 
grow that progress by leaps and bounds over the next period of 
time.
    Senator Hagan. Do you have any examples, one example that 
you can address on that, as to how that works?
    Ms. Mann. How the Money Follows works?
    Senator Hagan. Yes.
    Ms. Mann. States get grants and there's enhanced match for 
some services. It's 100 percent paid for by the Federal 
Government, and it allows the State to set up systems, 
infrastructures, to bring in peer supports, whatever may be 
necessary to help transition people from an institution into 
the community.
    Then the grant also allows them to pay for the community-
based services for the first 365 days after they've 
transitioned out of the community. So it's setting up a care 
plan, making sure that the services are available in the 
community, setting up the community setting, making sure that 
the person has the services they need.
    Then some of the rub comes in, because of what happens 
after the 365 days.
    Senator Hagan. That was my next question. After the next 
year, with the States having extreme budget problems that 
everybody's in right now----
    Ms. Mann. That's right, and that's where we've had 
problems.
    Senator Hagan. That's a stumbling block.
    Ms. Mann. That's correct.
    Senator Hagan. Well, Ms. Mann, in your testimony you 
mentioned that there are still over 1.6 million Americans 
receiving services in institutions. That certainly seems like 
quite a huge number. Of those 1.6 million Americans, how many 
do you estimate are on community-based living waiting lists?
    Ms. Mann. Waiting lists? We don't really know. Some States 
don't create waiting lists. Some States have waiting lists for 
certain--as Mr. Perez was talking about before, there is 
different waivers for different types of disabilities, so that 
if a State doesn't run a home and community-based waiver for 
your type of disability in an institution, you may not be on a 
waiting list even though you are waiting.
    So it is hard to get a real accurate sense of the need from 
just looking at the waiting lists. I think some of what the 
Office of Civil Rights is doing in terms of its work inside 
institutions to be able to identify what portion of the people 
in the institutions want to be and believe they can live their 
lives productively outside of the institution is one of the 
most direct ways we have of really measuring that.
    Mr. Perez. The assessments haven't always been done, and so 
that's why it's difficult to quantify the percentage of people 
in that broader figure. Olmstead talks about having an 
assessment done by a treatment professional and part of our 
work is to ensure that those assessments are, in fact, being 
done and that they're done by a qualified treatment 
professional.
    Ms. Mann. That's certainly part of what Money Follows the 
Person looks at and encourages.
    Senator Hagan. You also mentioned in your testimony that 
CMS works with States to provide technical assistance to meet 
community-based requirements. Can you tell me what some of the 
technical assistance provisions are?
    Ms. Mann. We have a number of different contracts that we 
work with, that we have working with States. Our staff will 
work tirelessly with a State that comes in and says: ``I'm 
thinking of moving in this direction;'' ``I'm stuck,'' or 
``I've gone in this way and I've had a problem,'' or ``DOJ is 
after me, what should I do,'' whatever the circumstances might 
be.
    One of the things that we did in our May 20 letter to State 
Medicaid directors is to try and remind them that there is 
really a wide array of options, so that on a piece of paper 
they can see those options, and then to invite them to work 
with us, in some cases to work with our contractors, to think 
about what are the options that are most viable for them, given 
their particular circumstances.
    Senator Hagan. Thank you, Mr. Chairman.
    The Chairman. Thank you, Senator Hagan. Again, I apologize. 
I guess I was just thinking about one question I wanted to ask 
Ms. Mann before you left.
    Do you think the 6 percent is going to be enough? I'm 
talking about the Community First Choice Option beginning 
October 2011. We wrestled with that and I don't know if you 
have any feel for it. But what do you think? Do you think that 
6 percent bump-up in FMAP will be enticing enough?
    Ms. Mann. I'm optimistic that it will be. It's certainly 
not an insignificant bump-up for States, Senator. We've heard 
some really positive reactions from States. I think time will 
tell and it depends how long this period of economic downturn 
continues. But at least it's getting people's attention, let's 
put it that way. They're noticing that it's there and see it as 
an important part of helping them move forward, and whether it 
proves to be sufficient, we'll certainly be watching that 
closely and wanting to work closely with you about what we're 
seeing.
    The Chairman. Great.
    Tom, have you got any last comments?
    Mr. Perez. Thank you for your leadership. Civil rights is 
about persistence and you're one of the most persistent leaders 
I have ever met, Mr. Chairman.
    The Chairman. I'll return the compliment. I thank you and 
Ms. Mann both for your aggressive championing of people with 
disabilities in all aspects. I just can't thank you enough.
    Mr. Perez. Thank you.
    The Chairman. I appreciate it.
    Ms. Mann. Thank you.
    The Chairman. We'll call our second panel. Our first 
witness is Robert Bernstein. Dr. Bernstein is Executive 
Director of the Bazelon Center for Mental Health Law in 
Washington, DC. A nationally recognized expert on public mental 
health, he was the architect of an innovative system serving 
people with persistent mental illnesses in integrated 
community-based settings.
    He holds a doctorate in psychology and is also an 
experienced clinician. He has served as an expert for the U.S. 
Department of Justice and State protection and advocacy 
agencies. Dr. Bernstein joined the Bazelon Center in 1997.
    Our second witness is Jeffrey Knight. Mr. Knight is an 
individual with a disability who is a current beneficiary of a 
home and community-based waiver, as well as the Money Follows 
the Person Rebalancing Initiative in the State of Maryland.
    Mr. Knight was born in Virginia and graduated from Warren 
County High School. After graduation he lived on his own, 
supporting himself at the age of 18. He worked for over 11 
years for Fort Detrick in Frederick, MD. Over 2 years ago, Mr. 
Knight entered the hospital because of seizures. He eventually 
was placed in a nursing facility. He lived at Citizens Nursing 
Home, a county-owned facility. During his 2 years in the 
nursing facility he sought help to return to the community and 
he fought hard to leave the facility and gain back his freedom.
    On October 1, 2009, he was able to leave the nursing home 
through the use of a Medicaid waiver and the Money Follows the 
Person program in Maryland. He is currently living in the 
community and enjoying the opportunities of community life.
    I might just note that he began with 16 hours of personal 
assistance per day and now he's down to 8 hours, and he's 
become a self-advocate, as I'm sure we'll hear here pretty 
soon.
    The third witness is Nancy Thaler, Executive Director of 
the National Association of State Directors of Developmental 
Disabilities Services, which serves 50 States and the District 
of Columbia, and keeps State leaders informed about Federal 
policy and service innovations. Ms. Thaler began her career in 
1971 working in nonprofit agencies, developing community 
services for children and adults with developmental 
disabilities.
    Joining the Pennsylvania State Government in 1987, she 
managed a system of institutional and community services for 
over 80,000 individuals. Ms. Thaler's leadership enabled the 
expansion of community services for Pennsylvanians with 
disabilities, resulting in a 50 percent reduction of the 
institutional population during her tenure. Fantastic.
    Then last we have Kelly Buckland, Executive Director of the 
National Council on Independent Living (NCIL), which we all 
know as ``Nickel.'' Mr. Buckland has been actively involved in 
disability issues since 1979. He started his career as an 
employee for Idaho's protection and advocacy system. He served 
for over 20 years as the Executive Director of the Boise Center 
for Independent Living and the Idaho State Independent Living 
Council.
    Mr. Buckland has served on the NCIL Governing Board since 
1998, as vice president from 2001 to 2005, and as president 
from 2005 to 2009. He has been honored with numerous State and 
national awards, graduated from Boise State University with a 
B.A. in social work, and, most important of all, earned his 
master's degree in rehabilitation counseling from Drake 
University in Des Moines, IA.
    Welcome, all of you, to this panel. As I said for the first 
one, your statements will be made part of the record in their 
entirety. I'd ask if you might just--and we'll just go from 
left to right--just sum up in 5 minutes or so your main points, 
so we can engage you in a conversation.
    Mr. Bernstein, welcome and again congratulations to you and 
the Bazelon Center for all the great work you've done.

   STATEMENT OF ROBERT BERNSTEIN, Ph.D., EXECUTIVE DIRECTOR, 
              BAZELON CENTER FOR MENTAL HEALTH LAW

    Mr. Bernstein. Thank you very much, Mr. Chairman, and thank 
all members of the committee for allowing me to testify today. 
I'm pleased to testify about the Americans With Disabilities 
Act, legislation that is crucially important to people with 
mental illness. My name is Robert Bernstein and I'm President 
and Director of the Bazelon Center for Mental Health Law, which 
has been advocating for the rights and social inclusion of 
people with mental illness for almost 4 decades.
    I began my work as a psychologist in public mental health, 
where I learned firsthand how law and policy define or 
foreclose opportunities for people with serious mental illness, 
particularly those who rely on public assistance.
    From the ADA's inception, the Bazelon Center has worked to 
make sure that its protections include people with mental 
disabilities, and we continue to advocate in the courts, with 
legislative bodies, and with Federal and local agencies to 
ensure that it has its intended impact. No group of disabled 
Americans has been subjected to more harmful and enduring 
discrimination than people with serious mental illness. 
Hundreds of thousands of these Americans were once physically 
segregated behind the locked doors of State hospitals based on 
fear, disdain, or the perception that there were no viable 
alternatives. In many ways, sadly, as you heard earlier, this 
history remains with us today, in nursing homes, board-and-care 
facilities, and jails across the Nation.
    The ADA for us represents a very ordinary vision, but one 
that dramatically departs from this history, a vision that 
people with serious mental illness may have homes they can call 
their own and participate in society as neighbors, friends, and 
co-workers, and that they be judged as individuals, untarnished 
by shaming stereotypes.
    Of course, the bold act of Congress, for which we're 
eternally grateful, even when bolstered by the U.S. Supreme 
Court's landmark Olmstead, does not instantly reverse 
discrimination that is embedded in society and reflected in its 
institutions. But on this 20th anniversary of the ADA's 
enactment, I'm happy to report that we have at least begun to 
think about mental disability and the role of public systems in 
very different ways.
    Nationally, we see examples of programs demonstrating that 
people with serious mental illness, even those who have been 
institutionalized for many, many years, can recover, live in 
their own homes, outside of psychiatric ghettos, and not be 
regarded as ``ex-mental patients.'' Scattered-site supportive 
housing is a powerful model that the Bazelon Center is strongly 
endorsing. Through local programs providing flexible, 
individualized services and supports to people in their own 
homes, individuals who were once consigned to isolated 
custodial settings now fulfill the vision of the ADA.
    Generally, as you've heard, this is achieved at costs that 
are lower than or, at most, equal to institutional care. These 
individuals not only realize their personal dreams, but by 
example demonstrate that the ambitious goals of the ADA are 
achievable even among a group as derided as people with serious 
mental illness.
    Our challenge today is not so much know-how or even 
demonstrating cost neutrality, as it is deconstructing the 
systemic barriers and vested interests that sustain segregation 
and low expectations. Large State hospitals may be relics of 
the past, but many people with serious mental illness remain on 
the margins of society because supportive housing and other 
good programs are in short supply. Often, access to these 
programs is targeted to groups that have been visibly failed by 
human services systems, people with frequent hospitalizations 
or those who are homeless or incarcerated, for instance. 
However, many more people with serious mental illness languish 
in archaic facilities such as nursing homes, group homes, and 
the infamous adult homes in New York City that a Federal court 
recently declared in violation of the ADA.
    Such facilities may be physically located in communities, 
but they are not at all what one would consider homes. The 
residents remain isolated from community life and they have no 
privacy, no meaningful personal choice, and no hope for 
something better. Their rights under the ADA notwithstanding, 
individuals living in these settings are often mischaracterized 
by public systems as successfully placed because they are no 
longer in hospitals. And, in the absence of litigation, they 
are no one's priority.
    For this reason, the Bazelon Center is working closely with 
the U.S. Department of Justice toward vigorous enforcement of 
Olmstead and to ensure that its benefits extend to all people 
with serious mental illness, including those who remain hidden 
on the sidelines. We are also working closely with the Centers 
for Medicare and Medicaid Services to extend to people with 
serious mental illness initiatives such as Money Follows the 
Person, that have promoted Olmstead for other disability 
groups, but have rarely reached people with serious mental 
illness.
    We are grateful for support from SAMHSA that allows us to 
provide technical assistance to States around Olmstead 
implementation, and one potential source of funding for the 
services we seek is the SAMHSA mental health block grant, which 
needs to be restructured to be more targeted and to focus more 
directly on the ADA as a priority.
    Last year on the tenth anniversary of the U.S. Supreme 
Court's decision, the Bazelon Center issued a call to action 
titled ``Still Waiting--The Unfulfilled Promise of Olmstead.'' 
I provided your staff with copies of this. In this report, we 
decried the slow progress toward integration and listed many 
opportunities for Federal, State, and local action.
    Fulfillment of this promise is important to all of us, not 
only because it will represent a more just society, but also 
because America will fully benefit from the now-unrealized 
contributions of people with mental illness.
    Thank you for this opportunity to testify. I look forward 
to your questions.
    [The prepared statement of Mr. Bernstein follows:]
             Prepared Statement of Robert Bernstein, Ph.D.
    Mr. Chairman and members of the committee, I am pleased to testify 
before you today about the Americans with Disabilities Act (ADA), 
legislation that is crucially important to people who have mental 
illness. My name is Robert Bernstein and I am the president and 
director of the Bazelon Center for Mental Health Law, which has 
advocated for the rights and social inclusion of people with mental 
disabilities for almost four decades. I began my work as a psychologist 
in public mental health, where I learned first-hand how law and policy 
define--or foreclose--opportunities for people with mental illness, 
particularly those who must rely on public systems.
    From the ADA's inception, the Bazelon Center has worked to make 
sure that its protection include people with mental disabilities, and 
we continue to advocate in the courts, with legislative bodies, and 
with Federal and local agencies to ensure that it has its intended 
impact. No group of disabled Americans has been subjected to more 
harmful and enduring discrimination than people with serious mental 
illness. Hundreds of thousands of these Americans were once physically 
segregated behind the locked doors of huge abusive State hospitals, 
based on fear, disdain or the perception that there were no viable 
alternatives. In many ways, that history remains alive--in nursing 
homes, board-and-care facilities and jails across the Nation.
    The ADA represents a very ordinary vision, but one that 
dramatically departs from this history: A vision that people with 
serious mental illness have homes they can call their own and 
participate in society as neighbors, friends and co-workers, and that 
they are judged as individuals, untarnished by shaming stereotypes. 
Recognizing the harmful effects of ingrained discrimination and 
inaction--or even resistance--by States to the reforms demanded by the 
ADA, the Bazelon Center played an important role in defending the law's 
``integration mandate'' when Olmstead came before the Supreme Court. 
Gleaning the essence of the ADA and the larger civil rights movement 
for people with mental illness, the Supreme Court found in Olmstead 
that ``Unjustified isolation . . . is properly regarded as 
discrimination based on disability.''\1\ Without question, the marginal 
social status of many individuals who have serious mental illness is 
the product of such discrimination. Further, the Supreme Court affirmed 
that public systems' unnecessary consignment of people with mental 
illness to institutional living, ``perpetuates unwarranted assumptions 
that persons so isolated are incapable or unworthy of participation in 
community life.''\2\
---------------------------------------------------------------------------
    \1\ Olmstead v. LC, No 98-536 (U.S. Sup Ct, June 22. 1999).
    \2\ Ibid.
---------------------------------------------------------------------------
    Of course, a bold act of Congress--even when bolstered by a 
landmark Supreme Court decision--does not instantly reverse 
discrimination that is embedded in society and reflected in 
institutions. But on this 20th anniversary of the ADA's enactment. I am 
happy to report that we have at last begun to think in very different 
ways about mental disability and the proper role of public systems. 
Recovery and hope have replaced containment as the new focus of public 
mental health services.\3\ And nationwide, we see many examples of 
programs demonstrating that people with serious mental illness can 
recover, live in their own homes outside of psychiatric ghettos and not 
be regarded as ``ex-mental patients.'' Scattered-site supportive 
housing is a powerful model that the Bazelon Center is promoting to 
support successful community membership among people with serious 
mental illness.\4\ Through local programs providing flexible, 
individualized services and supports to people in their own homes, 
individuals who were once relegated to isolated custodial settings now 
fulfill the vision of the ADA. These individuals not only realize their 
personal dreams but, by example, demonstrate that the ambitious goals 
of the ADA are achievable, even among a group as derided as people with 
serious mental illness. And as we have seen in New York, where the 
Department of Justice has joined the Bazelon Center and local advocates 
in litigation to allow residents of archaic adult homes to live in 
scattered-site supportive housing, the very individuals who were once 
confined in these settings are reaching back to assist their peers in 
re-entering community life.\5\
---------------------------------------------------------------------------
    \3\ New Freedom Commission on Mental Health, Achieving the Promise: 
Transforming Mental Health Care in America. Final Report. DHHS Pub. No. 
SMA-03-3832. Rockville. MD: 2003.
    \4\ See http://bazelon.org.gravitatehosting.com/
LinkClick.aspx?fileticket=q6Fsul.6o_jw%3d&
tabid=241.
    \5\ See http://bazelon.org.gravitatehosting.com/In-Court/Current-
Cases/Disability-Advocates-Inc.-v.-Paterson.aspx.
---------------------------------------------------------------------------
    Ironically, these positive outcomes in supportive housing can be 
achieved at costs that are lower than, or at most equal to, 
institutional care. The cost of serving a person in supportive housing 
is half the cost of a shelter, a quarter the cost of being in prison 
and a tenth the cost of a State psychiatric hospital bed.\6\ And 
supportive housing is not unique in this regard. For instance:

    \6\ Houghton, The New York/New York Agreement Cost Study: The 
Impact of Supportive Housing on Services Use for Homeless Mentally Ill 
Individuals, May 2001, 6-7. http://www.csh.org/index.cfm/
?fuseaction=Page.viewPage&pageID=3251.

     Investments in treatment and parole services could save 
States $4.1 billion. For example, every dollar spent on community-based 
drug treatment avoids $18 in State spending.\7\
---------------------------------------------------------------------------
    \7\ Justice Policy Institute, Pruning Prisons: How Cutting 
Corrections Can Save Money and Protect Public Safety, http://
www.justicepolicy.org/content-hmID=1811&smID=1581&ssmID=84
.htm.
---------------------------------------------------------------------------
     An in-home crisis intervention program for psychiatric 
patients found that nearly 81 percent could be treated at home and that 
patients who received home care were less likely to be re-admitted to 
the hospital. Considering that the average 2007 Medicare payment was 
$137 for a home health day versus $1,447 for a hospital day and $325 in 
a skilled nursing facility, the home-care option can produce 
significant savings.\8\
---------------------------------------------------------------------------
    \8\ Agency for Healthcare Research and Quality, Home Health's 
Ability to Control National HealthCare Costs, http://www.ahhqi.org/
download/File/databook/ControlCosts.pdf.
---------------------------------------------------------------------------
     Systems of care for children reduce inpatient hospital 
days, saving an average $2,777 per child, and arrest rates, for average 
per-child savings of $784. Multi-systemic therapy for high-risk youth 
saves more than $31,661 in subsequent costs to the criminal justice 
system, while multidimensional treatment foster care for troubled youth 
saves $43.70 in residential treatment costs for every dollar spent.\9\
---------------------------------------------------------------------------
    \9\ Daly, R. Mentally Ill Youth Do Best In Community Care Settings, 
Psychiatric News, June 2, 2006; Washington State Institute for Public 
Policy, The Comparative Costs and Benefits to Reduce Crime, 2001, 
http://www.wsipp.wa.gov/rptfiles/costbenefit.pdf.

    Our challenge today is not so much demonstrating that we know how 
to assist people with serious mental illness in realizing their rights 
under the ADA, or even in demonstrating that the outcomes we seek are 
fiscally sound. Much more at the forefront of our advocacy in pursuit 
of community integration for people with serious mental illness is the 
task of deconstructing the systemic barriers and challenging the vested 
interests that sustain segregation and low expectations. Large State 
hospitals may be relics of the past, but many people with serious 
mental illness remain on the margins of society because supportive 
housing and other good programs are in short supply. Often, access to 
these programs is targeted to groups that have been visibly failed by 
human service systems--people with frequent hospitalizations, or those 
who are homeless or incarcerated, for instance. However, many more 
people with serious mental illness languish in archaic facilities, such 
as nursing homes, group homes and the infamous ``adult homes'' in New 
York City that a Federal court recently declared in violation of the 
ADA.\10\
---------------------------------------------------------------------------
    \10\ See http://bazelon.org.gravitatehosting.com/In-Court/Current-
Cases/Disability-Advocates-Inc.-v.-Paterson.aspx.
---------------------------------------------------------------------------
    Such facilities may be physically located in communities--and some 
even have the physical appearance of houses--but they are not at all 
what one would consider homes. The residents remain isolated from 
community life and they have no privacy, no meaningful personal choice, 
and no hope for something better. They often live with assigned 
roommates and may receive visitors only at defined times and in defined 
areas of the facility. The rights of these individuals under the ADA 
notwithstanding, people living in these settings have been 
mischaracterized by public systems as ``successfully placed'' because 
they are no longer in hospitals. Ironically, even as they face dire 
budgetary cuts, States continue to waste money by consigning people 
with mental illnesses to such institutional settings, often pressured 
by profit-making providers. While the annual cost of housing someone in 
these places may range $60,000 or more, it costs only $22,500 a year to 
provide independent housing with a full range of supportive services 
for a person with a serious mental illness--and this in New York City, 
one of the Nation's highest housing markets.\11\ As documented by the 
media nearly every day, public mental health systems, instead of 
shifting to such cost-effective (and Olmstead-compliant) approaches, 
continue to struggle.
---------------------------------------------------------------------------
    \11\ Bazelon Center for Mental Health Law, Still Waiting . . . The 
Unfulfilled Promise of Olmstead. A Call to Action on the 10th 
Anniversary of the Supreme Court's Decision, 2009, http: //
bazelon.org.gravitatehosting.com/LinkClick.aspx?fileticket = 
S5nUuNhJSoM%3d&tabid =
104.
---------------------------------------------------------------------------
    This is not to suggest that public mental health is adequately 
resourced--in part reflecting public attitudes about people with 
serious mental illness, State mental health systems were never 
adequately funded to achieve the basic ambitions of de-
institutionalization, let alone the goal of recovery. And growth in 
States' mental health spending (even during times when State coffers 
were flush) has lagged far behind that for other State agencies, 
representing about half of the growth in spending within their 
corrections systems.\12\ But even in today's difficult times, a more 
rational use of available dollars could very dramatically increase the 
availability of housing and supportive services that allow people with 
serious mental illness to realize their rights under the ADA.
---------------------------------------------------------------------------
    \12\ Ibid.
---------------------------------------------------------------------------
    Shortly after Olmstead was decided, the Bazelon Center issued a 
report entitled Disintegrating Systems: The State of States' Public 
Mental Health Systems.\13\ In that report, we anonymously quoted the 
mental health commissioner from a large State who was frustrated at the 
daunting systemic and political barriers (and, notably, not clinical 
barriers) that would need to be overcome if people with serious mental 
illness are to realize their rights under Olmstead. That State 
commissioner told the Bazelon Center: ``Someone should sue us.''
---------------------------------------------------------------------------
    \13\ Bazelon Center for Mental Health Law, Disintegrating Systems: 
The State of States' Public Mental Health Systems, 2001.

    Three years later, the Bazelon Center issued a statement on the 
impact of the ADA and the Olmstead decision to people with serious 
---------------------------------------------------------------------------
mental illness:

          Where real progress has occurred, it is largely because 
        States have been sued. Five years after Olmstead and 14 years 
        after enactment of the Americans with Disabilities Act, 
        litigation should be unnecessary. Yet it remains the single 
        most effective way to combat the persistent segregation of 
        people with mental illnesses.
          It's past time for Olmstead implementation to move out of the 
        courtroom and into America's communities.\14\
---------------------------------------------------------------------------
    \14\ Ibid.

    Although the Bazelon Center has a vibrant, longstanding and 
nationally recognized litigation agenda, it is a sad commentary that, 
in the face of obvious social, moral and fiscal arguments, we still 
need to turn to the courts to enforce the basic rights of these 
Americans. Yet, in the absence of litigation, people with serious 
mental illness are no one's priority--particularly those who live quiet 
lives, robbed of hope and isolated in archaic congregate facilities.
    For this reason, the Bazelon Center is working closely with the 
U.S. Department of Justice toward vigorous enforcement of Olmstead and 
to ensure that its benefits extend to all people with serious mental 
illness, including those who remain hidden on the sidelines. We are 
also working closely with the Centers for Medicare and Medicaid 
Services to extend to people with serious mental illness initiatives, 
such as Money Follows the Person, that have promoted Olmstead outcomes 
for other disability groups. We are grateful for support from the 
Substance Abuse and Mental Health Services Administration (SAMHSA) that 
allows us to provide technical assistance to States around Olmstead 
implementation. And one potential source of funding for the services we 
seek is the SAMHSA Mental Health Block Grant, which needs to be 
restructured to be more targeted and to focus more directly on the ADA 
as a priority.
    Last year, on the 10th anniversary of the Supreme Court's decision, 
the Bazelon Center issued a call to action titled Still Waiting--The 
Unfulfilled Promise of Olmstead, in which we decried the slow progress 
toward integration and listed many opportunities for Federal, State and 
local action.\15\ My testimony today reflects many of the findings from 
our report. Our recommendations for Federal actions call for Congress 
and the Federal agencies to carefully consider what we have learned in 
the 20 years since enactment of the ADA, including our successes, 
missed opportunities, and understanding of the system dynamics that 
have stalled progress for people who have serious mental illness.
---------------------------------------------------------------------------
    \15\ Ibid.
---------------------------------------------------------------------------
    The recent healthcare reforms enacted by Congress move us 
significantly forward in expanding access to coverage and addressing 
mental health as an aspect of overall health, on par with medical and 
surgical care. The impact of this legislation for people who have 
mental illness, particularly with regard to their rights under the ADA 
and Olmstead, will be defined in the law's implementation. Among our 
recommendations for Federal actions, which may be of particular 
interest to the committee, we urge Congress and the Federal agencies 
to:

     Include in healthcare reform incentives that adequately 
address the needs of people with serious mental illnesses. The law 
requires that the essential benefit include rehabilitation services, 
but these are not defined. It will be critical for the Department of 
Health and Human Services (HHS) to define this term so as to include 
coverage of psychiatric rehabilitation, peer support and case 
management services.
     Establish linkages between private plans and the public 
mental health systems. Comprehensive systems that address a person's 
total health care needs, such as medical homes, need to address mental 
health issues and specialized medical homes that serve individuals with 
serious mental illness (such as are authorized as a demonstration of 
SAMHSA) need to be expanded.
     Pass the Community Choice Act, which would make a package 
of home- and community-based services a mandatory Medicaid service for 
individuals who would otherwise be served in institutional settings.
     Amend Medicaid to give States the option to provide home- 
and community-based services to children with serious mental disorders 
who are at risk of placement in residential treatment facilities (at 
this time, these facilities do not qualify as ``institutions'' under 
the section 1915(c) authority).

    We recommend that CMS, as the agency administering the Medicaid 
program, should:

     Issue letters to State Medicaid directors highlighting 
both ways for States to facilitate integration and options for 
financing services in integrated settings for people with mental 
illness.
     Clarify that while Medicaid permits States to limit the 
number of individuals served in waivers, Olmstead may require that 
limits on waiver participation be lifted. CMS should streamline and 
accelerate the waiver process and condition renewal on States expanding 
the waiver to cover more people.
     Revamp the Federal rules on rehabilitation services to 
encourage States to furnish the evidence-based services that have 
proven effective in helping people with serious disorders to live in 
the community.
     Encourage the use of homes or homelike settings, by paying 
for therapeutic foster care for children.
     Accelerate its actions toward aggressive enforcement of 
current requirements for screening of individuals prior to nursing-home 
placement. The intent of this underutilized mandate--known as Pre-
Admission Screening and Resident Review (PASRR)--is to avoid 
inappropriate Medicaid expenditures for institutional care and the 
``dumping'' of people with mental illnesses who should be served in 
their home communities. While pre-dating enactment of the ADA, PASRR 
should serve as a powerful tool to avert unwarranted institutional 
segregation.
     Enforce the ``IMD'' rule that prohibits Medicaid payment 
for mental health services to people between the ages of 22 and 65 in 
an ``institution for mental diseases''--a facility in which a 
significant percentage of residents have mental illnesses.

    We are heartened by recent actions by CMS and the Department of 
Housing and Urban Development to promote supportive housing for people 
with serious mental illness, using HUD funds and Medicaid. In addition, 
Congress should:

     Enact and fully fund the Melville Supportive Housing 
Investment Act to improve Section 811 Supportive Housing for Persons 
with Disabilities. Once the law is enacted, the administration should 
initiate HUD planning to implement its provisions expeditiously.
     Ensure dedicated support for the National Housing Trust 
Fund to produce or preserve 1.5 million homes and 200,000 new Housing 
Choice vouchers per year for the next 10 years. HUD regulations and 
guidelines for implementation of the Fund must prioritize creation of 
new affordable supportive housing for people with disabilities who have 
SSI-level incomes. (In most urban areas, market rent exceeds monthly 
SSI disability payments).
     Sustain existing supportive housing by renewing with 
predictability and stability its funding for rent and operating 
subsidies and services.
     Create incentives within the HOME program to encourage 
State and local housing officials to prioritize permanent supportive 
housing. For example, a percentage of HOME funds could be set aside for 
permanent supportive housing.
     Increase Federal funding for re-entry supportive housing 
vouchers and services for people with mental illnesses leaving 
correctional facilities. One way is through creation of a bridge 
rental-voucher program in which the Justice Department's Bureau of 
Justice Assistance awards grants for vouchers to State and local 
jurisdictions.
     Make clear that States violate Olmstead when they direct 
SSI money to uses that promote segregation of individuals with 
disabilities in private facilities (including board and care homes).
     Ensure that the Section 8 housing certificates allocated 
to individuals with disabilities are actually in the hands of such 
individuals.

    We have been working closely with leadership within the Department 
of Justice (DOJ) and highly commend its increasing attention to the ADA 
rights of people with serious mental illness. DOJ, in some cases along 
with other agencies, should:

     Vigorously enforce Olmstead, including by filing cases 
that raise solely Olmstead claims.
     Adopt legal positions that would make Olmstead enforcement 
more effective.

    The Office of Civil Rights (OCR) of HHS should also enforce 
Olmstead vigorously. OCR should:

     Broaden its enforcement efforts beyond those primarily 
driven by individual complaints; rather, evidence of systemic issues, 
including evidence other than complaints, should inform OCR's 
activities.

    What we conclude is lacking for people with mental illness to fully 
realize their rights under the ADA and Olmstead--and what is urgently 
needed--is political will. Fulfillment of the promise of the ADA is 
important to all of us not only because it will represent a more just 
society, but also because America will fully benefit from the now 
unrealized contributions of people with mental illness.
    Thank you for this opportunity to testify. I look forward to your 
questions.

    The Chairman. Mr. Bernstein, thank you very much for an 
excellent statement.
    Now we'll turn to Jeffrey Knight. Mr. Knight, welcome to 
this committee.

           STATEMENT OF JEFFREY KNIGHT, FREDERICK, MD

    Mr. Knight. Hello, Senator Harkin and committee members. 
I'm just nervous, this is my first time. Thank you for giving 
me the opportunity, the chance to tell you my story. My name's 
Jeffrey Knight. I spent 2 years at Citizens Nursing Home. I 
entered the hospital after having an epileptic seizure and was 
placed in the nursing home because I could no longer walk.
    It took me 2 years to leave the nursing home. At the time I 
went into the nursing home, I told myself I would get out and 
would not spend my life there, and I wanted my own apartment 
and to regain my freedom. Before I went into the nursing home, 
I lived at home and worked a job for 11 years at Fort Detrick. 
In the nursing home they treated me like a baby. They tell you 
when you can eat and when you can sleep and when you can smoke 
cigarettes and there was no privacy. I didn't worry about those 
things, but my life in there was spent in a small room, and 
shared with a stranger, and I wanted to get out because it was 
better to leave there. I had physical therapy to build my legs 
up, and am able to walk again. However, they stopped giving me 
the therapy I needed to walk. They stopped giving me services 
that I needed to walk and to stay able to walk. Then I was 
always afraid to walk a short distance. I slipped and fell on 
the wooden floors. The towels were dirty, and being in the 
nursing home was disturbing.
    In October 2009 I was able to leave the nursing home going 
into my own apartment. Again, since living at home, I'm able to 
continue my therapy level and am building my legs up and can 
one day return to work, which is my biggest goal, and go out to 
dinner and to my friends' home, and go to picnics.
    At the nursing home I felt like I was locked in. I walked 
around in the nursing home--it was like a cage, you know, 
living there. It was just a bunch of older people. It wasn't 
for me. That's what I was trying to say. The place was not for 
me. It was just older people and I was younger. I'm only 49. 
There were older people there, and I finally got out.
    That's all. Thank you.
    [The prepared statement of Mr. Knight follows:]

                  Prepared Statement of Jeffrey Knight

    Good Afternoon Senator Harkin, Ranking Member Enzi, and members of 
the committee. I am Jeffrey Knight. I am a participant of a 1915(c), 
Home and Community-Based Medicaid waiver and the Money Follows the 
Person Rebalancing Initiative.
    I appreciate this opportunity to discuss my experiences living in a 
nursing facility and how much it means to me to be given the 
opportunity to return to the community and live in my own home again. 
Without Maryland's Money Follows the Person program and the new Money 
Follows the Person program, I would have never had the opportunity to 
live in my own home again.
    First, let me tell you a little history of Maryland's programs. 
House bill 752 enacted during the 2002 legislative session, requires 
social workers in nursing homes to present residents with information 
about home and community-based services that might help them live in 
the community. In the 2003 legislative session, lawmakers enacted House 
bill 478, the Money Follows the Individual Act. The act allowed 
individuals living in nursing facilities to access a 1915(c) waiver, 
Medicaid home and community-based waivers known as the Older Adults 
waiver and the Living at Home waiver. The Older Adults waiver was 
designed to provide Medicaid plus home and community-based services for 
individuals age 50 and older. It also includes transitional services 
such as the first month's rent, electricity, phone, furniture, 
household supplies, food, etc. for the first month. The financial 
eligibility requirements allow individuals who were 300 percent of 
Supplemental Security Income level to access the program. The Living at 
Home waiver is similar but it is for individuals age 21 through 65. 
Until 2003, anyone could apply for a waiver whether they were in a 
nursing home or living in the community, but there was a waiting list. 
In 2003, both of the waiver programs were closed to community 
applicants because there weren't any slots available. Maryland began a 
registry for community applicants. The Money Follows the Person Act 
made it possible for anyone who resided in a nursing facility to 
receive a waiver without being on a waiting list or the registry. 
Currently, the registry has 15,000-plus persons on the list waiting for 
waivers. There is no such list for nursing home residents. 
Unfortunately, the only way to get a waiver is to live in a facility 
and be on long term Medicaid for 30 days. The law prohibits the 
Department of Health and Mental Hygiene from denying an individual 
access to HCBS waiver services due to a lack of funding for the 
program.
    Maryland is 1 of 31 states receiving Federal funds from the Centers 
for Medicare and Medicaid for the Money Follows the Person 
Demonstration program as a result of the Deficit Reduction Act of 2005. 
Maryland has developed a Money Follows the Person Demonstration program 
to re-balance its long-term care costs from institutional care to home 
and community-based services so the money will follow the person into 
the community. I am a beneficiary of that effort.
    I am 49 years of age. I was born and raised in Front Royal, VA. I 
graduated from Warrenton High School. After graduating, I moved to 
Frederick, MD. I have lived in Frederick County for 31 years. I worked 
at Fort Detrick as a custodian for 11 years. I was born with 
developmental disabilities, Epilepsy and learning disabilities. I have 
lived on my own and supported myself since I was 18 years of age.
    Two years ago, I entered the hospital because of seizures. As a 
result, I was placed in a nursing facility for 24/7 care because of my 
inability to walk. My healthcare providers did not feel because of my 
disability I was able to care for myself. I lived at Citizens Nursing 
Home, a county-owned facility. Citizens Nursing facility is no 
different from other nursing homes. I had a horrible experience living 
there. It was depressing being in a place that was mostly older people. 
I had no one to talk to that I could relate with. I didn't like how I 
was cared for or how others were cared for. They treated me like a 
baby. They told me when to eat, sleep, and smoke. I had no time that 
was private or could be on my own. The small space given to me as a 
bedroom was small and confining. It was more like a hospital room. You 
have to share it with someone else. You didn't have your own things. 
There was no privacy, people in and out of your room, all day and all 
night. Your personal belongings are not safe. Things like electronics, 
food, and money are stolen. You hear residents screaming all night 
long. You have to eat what they prepared for you, not what you wanted 
to eat. I will never eat chicken again for as long as I live. Just to 
have a hot dog or a hamburger again was a dream come true. It was not 
clean. The floors and bathrooms had urine all over them. They didn't 
give you the therapy to get better. I just sat and stagnated, day after 
day. I had reached my limit and felt that I had to get away from there. 
I could not take living there any longer. I was totally disgusted with 
institutional life. So, I contacted the Maryland Disability Law Center 
(MDLC), the local protection and advocacy organization to find out what 
my options were. I wanted to go home. They worked with me by advocating 
getting the Living at Home waiver. The Freedom Center also worked with 
me to help me gain my freedom back.
    In October 2009, I was finally able to leave. Between MDLC and The 
Freedom Center, my apartment was found and my services were put in 
place. The Living at Home waiver vendor, The Coordinating Center, 
helped me develop a plan of service which cost $48,229.88 for 6 months. 
This included 16 hours of care for the first 3 months and 12 hours of 
care for 3 more months. After 6 months, I was able to get the waiver 
for a year at a time because my attendant care was reduced to 8 hours 
per day. I don't need as much care now. The cost of my plan of services 
now is $25,094.44. It is much more cost-effective living in my own 
apartment and that cost is going down allowing Maryland to save even 
more dollars as a result of the Money Follows the Person Demonstration 
program. Because of the Medicaid waiver program and Money Follows the 
Person, I have my own privacy and freedom to come and go as I please I 
am not locked down like I am in a cage. I get to eat what I want to 
eat. That first hot dog was the best meal I had ever had. I can eat 
what I want and when I want to. I am now able to get rehabilitation so 
I can build my legs up to be able to walk again. I came out of a 
nursing home using a wheelchair and now, most of the time, I can use 
just my walker. It is my hope to be able to walk without assistance. My 
No. 1 goal is to be able to go back to work part time. I can take my 
medication on my own. I don't have to wait until someone brings it to 
me. I can visit friends in their homes for the holidays. I can watch TV 
when I want to. I can watch whatever I want on TV. I really love 
watching movies either in my bedroom or in my living room. I am able to 
attend social functions such as picnics and holiday parties. I am, for 
the last 8 months, enjoying my freedom and being able to control my 
life in the way I want to. I am at peace. I am becoming a self-advocate 
and have shown my support by my opposition to Transit budget cuts which 
would have affected my paratransit services. I will never go back to a 
nursing home. I will disappear if someone tries to put me back in a 
nursing home. I am so strong in wanting to live in the community that 
it was very hard for me while I waited for everything to be put in 
place so I could leave. I almost left the nursing home against medical 
advice. I was ready to leave with or without a waiver. I didn't because 
I didn't want to jeopardize what I needed in services. My life now is 
what I want it to be. I am happy and I get much better care than I ever 
did while in the nursing home. My meals are delicious. And, my 
apartment is clean. I cannot ever imagine being back in a nursing 
facility. I am relaxing and enjoying life.
    Thank you for allowing me to share my experiences with you and I 
hope that what I have said will help keep these valuable programs in 
place and allow others to leave nursing homes and gain their freedom as 
I have.

    The Chairman. Thank you, Mr. Knight. Thanks for being here 
and thanks for telling us your story, and your leadership. 
You're a great example for others.
    Mr. Knight. You're welcome.
    The Chairman. A great example.
    Mr. Knight. I think they rebuilt it, but the place should 
be looked at, because when I was there, I mean, for 2 years--at 
3 a.m., there were patients in the middle of the hallway laying 
in their own urine. And the shower was filthy. That's in 
Maryland, but they've rebuilt it now. So hopefully it's a lot 
better place.
    The Chairman. No one should be treated like that, no one.
    Mr. Knight. No, I know. Thank you.
    The Chairman. Thanks, Mr. Knight.
    Ms. Thaler.

        STATEMENT OF NANCY THALER, EXECUTIVE DIRECTOR, 
   NATIONAL ASSOCIATION OF STATE DIRECTORS OF DEVELOPMENTAL 
                DISABILITIES SERVICES (NASDDDS)

    Ms. Thaler. Chairman Harkin, Ranking Member Enzi, and 
members of the committee, thank you for the opportunity to 
appear today to talk about the successes and challenges that 
we've experienced, the States have experienced, in providing 
community opportunities for individuals with developmental 
disabilities.
    Mr. Perez talked about States having varying experiences 
depending on the category of people with disabilities. I'm here 
to talk about people with developmental disabilities, which 
includes a wide array of disabilities, including autism, 
Fragile X, and intellectual disabilities. But what people have 
in common is that they acquire their disability either at birth 
or in their early childhood years. So their families have been 
engaged in their disability issues as well.
    I'm the Executive Director of the National Association of 
State Directors of Developmental Disabilities Services. I've 
been in the field for 40 years in nonprofit agencies and in 
State and Federal Government. I was for 10 years the Director 
of the Developmental Disabilities System in Pennsylvania and 
later worked at CMS, helping them to devise protocols for 
Federal oversight of home and community-based services.
    I also should mention I'm the mom of a 45-year-old son, 
Aaron, who has developmental disabilities and whom my husband 
and I liberated from an institution through adoption.
    The mission of NASDDDS is to help States develop effective 
systems for people and their families. We do provide analysis 
of Federal statutes and regulations. We disseminate information 
on state-of-the art programs. We provide a great deal of 
technical assistance to our States, including about 
transferring people from institutions to the community. We are 
also a forum for the development of State and national policy 
initiatives.
    The States have made dramatic progress in moving from 
institutions to communities for people with developmental 
disabilities. The indicators of that progress are: the 
institutional population has dropped from a high of a quarter 
of a million people in 1967 to less than 36,000 people today. 
Of the $43 billion of State and Federal funds that are invested 
in the DD system, almost 70 percent is invested in community 
services. Today there are 10 States and the District of 
Columbia that have no public institutions and another 12 States 
with less than 200 people in institutions. We are definitely 
far down the path of moving toward the community.
    How has this success been possible or what have been the 
drivers of this success? There are about nine of them. First 
are the parents and advocates who initially in the 1970s 
outraged about conditions in institutions, fought to reform 
them and then close them. They later fought then for the right 
to education, which was adopted in 1975, which has made it 
possible for all children to go to public school every day. We 
saw then a precipitous decline in the admissions of children to 
institutions.
    Private nonprofit agencies, fueled with the energy of newly 
graduated baby boomers in the 1970s, came forward with great 
creativity to create a wide array of community services. The 
Department of Justice and the protection and advocacy agencies 
in States have filed actions to enforce the rights of people 
with disabilities and they have leveraged change as well.
    Medicaid funding and Federal statutes, in particular the 
Medicaid waiver and Money Follows the Person, have been 
critical. In fact, transformation of the system toward 
community services would not have been possible without them.
    The expectations of a new generation of families who expect 
that their children--who have been going to public school--are 
going to live their entire lives in the community, are leading 
to new challenges. People want to control their own budgets and 
make their own decisions about the services they get.
    Another factor driving change has been the cost of 
institutional services, which has become burdensome, at an 
average cost of $188,000 a year per person as compared to about 
$43,000 for home and community-based services.
    Another key factor has been that the States have authority 
to close institutional beds and institutions because they own 
them and they run them. They do not have that same authority 
over privately operated institutions or nursing homes. In order 
to achieve savings, it is necessary to close beds and move the 
resources to the community.
    Finally, people with developmental disabilities 
themselves--and Mr. Knight is a great example of that--
opportunities to live in the community and work in the 
community have brought abilities to life. Individuals with 
developmental disabilities have developed a strong collective 
voice through self-advocacy and they now speak for themselves 
very articulately.
    There are remaining challenges. One of the largest is the 
restricted availability of State funding, which has been and 
continues to be a barrier to developing community services. 
While States have embraced the Medicaid waiver, they are still 
dependent on the availability of State funds to expand 
services. We certainly would want to express our appreciation 
for the enhanced Federal financial participation through the 
ARRA (American Recovery and Reinvestment Act of 2009) 
legislation, which has, in fact, saved a lot of people by 
retaining their services.
    Another obstacle to continuing the move toward community 
and moving people out of institutions is certainly opposition 
from State institution employees, which is not surprising since 
they have reasonable fears that they will be unable to maintain 
employment at the same wages and benefits if the institution 
closes. This challenge is addressed State by State, almost 
institution by institution.
    Opposition from families of those living in institutions is 
probably the most complex of our challenges. When fears of 
abuse and neglect and poor quality in community services are 
addressed adequately, families may still object and feel that 
their decision should be final.
    It would be an easy path to let the issue go for the 36,000 
people remaining in institutions, avoiding having to ask 
families to reconsider a decision they made perhaps 30 or 50 
years ago. However, knowing what is possible, knowing how much 
people improve significantly when they move from the 
institution to the community, knowing that families 
overwhelmingly approve of community services once their family 
member moves, professionals and State agencies cannot just let 
it go. They are compelled to keep the question open.
    Another challenge for States is the waiting lists, which 
can be characterized as also preventing institutionalization. 
Almost all States have them and in too many places the death of 
a caregiver or some crisis is the only way to move to the top 
of the waiting list. The limited data we have suggests that 
there are thousands of people waiting. The shortage of State 
funds restricts growth of community services, a shortage that 
has become even more severe in the current economic climate.
    Then we have the choice paradox. The statutory basis for 
community services is the right to receive services in an 
institution. When individuals apply for community services, 
they must formally opt-out of the institution and affirmatively 
choose the community. We call this choice. However, we know 
from the work of Richard Thaler and Cass Sunstein, authors of 
``Nudge,'' that when we present individuals with a choice, the 
decision process can be structured in a way that will influence 
their choice.
    For instance an opt-out decision process is generally 
recommended for the administration of retirement programs 
because it results in more people enrolling in retirement 
programs because they choose not to opt-out. So what is the 
message in requiring individuals to opt-out of institutional 
services in order to receive home and community-based services? 
The message is a mixed one, because it promotes institutions 
even for those who desire the community. More than one State DD 
director has identified this quirk in the Medicaid program as 
problematic.
    Finally, I'd like to say that the goal of the DD system is 
about a lot more than just providing services in the community. 
It is about achieving the full participation of people in the 
life of their community. A real job at competitive wages, 
membership in civic organizations, knowing their neighbors, and 
having friends are the real measures of success.
    The last thing I'd like to talk about are the apologies 
that we have seen from States. Recently the State of Minnesota 
became the sixth State in the Nation to issue a formal apology 
to people with developmental disabilities for the years of 
incarceration, abuse, and neglect in State-operated 
institutions. Those other States are Virginia, Oregon, 
California, South Carolina, and North Carolina.
    Such an apology is an indication of a sea change in 
attitudes. States are apologizing to a group of people who in 
recent history were stripped of all their rights, who were 
denied an education and often medical treatment, who have been 
sterilized without consent, and were presumed to have nothing 
to offer society. These apologies, coupled with the almost 
complete abandonment of the term ``mental retardation'' from 
the names of State agencies, are indications that our public 
systems are about more than providing services; they are about 
respecting the rights and dignity of people with developmental 
disabilities and creating opportunities for full participation.
    Change has reached all 50 States and the District of 
Columbia. They are all progressing, each at a different pace, 
but they are all making progress toward comprehensive systems 
of community supports and services.
    Thank you.
    [The prepared statement of Ms. Thaler follows:]

                   Prepared Statement of Nancy Thaler

    Chairman Harkin, Ranking Member Enzi, members of the committee, 
thank you for the opportunity to appear today to discuss the successes 
and challenges States have experienced in providing community 
opportunities for individuals with developmental disabilities.
    I am the Executive Director of the National Association of State 
Directors of Developmental Disabilities Services (NASDDDS). I began my 
career in 1971 working in nonprofit agencies developing community 
services for children and adults with developmental disabilities. Six 
years after joining Pennsylvania State government, I was appointed the 
State's Deputy Secretary for Mental Retardation where, from 1993 to 
2003, I managed a system of institutional and community services for 
over 80,000 individuals. During my tenure as the State director there 
was significant expansion of community services for Pennsylvanians with 
disabilities who were on the waiting list for community services, 
including those living in institutions. During that time, over 2,000 
people in intuitions were provided with the opportunity for community 
living, reducing the institutional population by more than 55 percent. 
From 2003-2005, I served as the Director of Quality Improvement for the 
U.S. Department of Health and Human Services' Centers for Medicare and 
Medicaid Services (CMS), Disabled and Elderly Health Programs Group, 
and was responsible for developing Federal oversight of State-operated 
Medicaid Home and Community-Based Services Waiver programs. My husband 
and I are adoptive parents of an adult son with developmental 
disabilities who spent much of his childhood in an institution and now 
lives and works in the community.
    The National Association of State Directors of Developmental 
Disabilities Services provides an array of services to developmental 
disability (DD) agencies in the 50 States and the District of Columbia. 
The NASDDDS mission is to assist member State agencies in building 
effective, efficient person-centered systems of services and supports 
for people with developmental disabilities and their families. NASDDDS 
strives to provide member State agencies with timely analyses of 
Federal statutory and regulatory policies that affect people with 
disabilities; to disseminate information on state-of-the-art programs 
and service delivery practices; to supply technical assistance and 
support to member States; and to offer a forum for the development of 
State and national policy initiatives.

     PROGRESS IN ENSURING COMMUNITY OPPORTUNITIES FOR INDIVIDUALS 
                           WITH DISABILITIES

    In 1967, the number of people with what was then called mental 
retardation living in large State institutions reached its high point, 
with 228,500 in large State intellectual/developmental disability (I/
DD) institutions and 33,850 in psychiatric institutions. Much has 
changed since 1967. The most recent national data from 2008 indicates 
that there were 36,508 in State I/DD institutions--a drop of 194,650 
people (84 percent) since 1967; and 767 in psychiatric institutions, a 
drop of 33,083 people (98 percent).\1\
---------------------------------------------------------------------------
    \1\ Residential Services for Persons with Developmental 
Disabilities: Status and Trends Through 2007 Lakin, K.C., Larson, S.A., 
Salmi, P. & Scott, N.
---------------------------------------------------------------------------
    Between 1967 and the mid-1980s, 5,000 to 10,000 people moved back 
into the community each year.\2\ The civil rights movement that swept 
the country reached all elements of society, including people living in 
institutions. Many individuals who learned that they had a right to 
leave the institution, and had the capacity to do so without special 
assistance, simply left. The individuals who remained in institutions 
in the mid-1980s by and large could not leave to live in the community 
without special assistance.
---------------------------------------------------------------------------
    \2\ Residential Services for Persons with Developmental 
Disabilities: Status and Trends Through 2007 Lakin, K.C., Larson, S.A., 
Salmi, P. & Scott, N.
---------------------------------------------------------------------------
    In 1982 the adoption of the Medicaid Home and Community-Based 
Services (HCBS) Waiver made that assistance available. Allowing funds 
that were previously reserved for institutional services to be used for 
community services enabled State DD departments to build systems of 
community services that initially supported people leaving institutions 
and soon expanded to those at risk of institutionalization. For the 
next two decades, the institutional census continued to drop annually 
by 4,000 to 5,000 people.
    Today, 10 States and the District of Columbia have no institutions 
for people with developmental disabilities; and 12 States have less 
than 200 people still living in institutions--Michigan with less than 5 
and Minnesota with less than 25. A recent survey conducted by our 
association found that 67 percent of the States with institutions have 
plans to downsize or close facilities in the next few years.
    By 2006, all but one State was spending more for community services 
than for institutional services. And, of the approximately 1 million 
people receiving services, less than 3.6 percent reside in 
institutions. By 2008, 66 percent of the $43.83 billion of State and 
Federal funds that support people with I/DD were committed to community 
services.\3\
---------------------------------------------------------------------------
    \3\ The State of the States in Developmental Disabilities 2008 
Braddock, Hemp, Rizzolo Coleman Institute for Cognitive Disabilities, 
The University of Colorado.
---------------------------------------------------------------------------
    Why has there been such an overwhelming trend toward community 
services in the developmental disabilities services systems? There are 
many reasons and there have been many drivers.

       KEY FACTORS DRIVING THE DEVELOPMENT OF COMMUNITY SERVICES

    First and Foremost is the Parent/Advocacy Movement. Outrage at 
horrific conditions in public institutions in the 1960s and the lack of 
services for children and adults living with their families in the 
community fueled simultaneous efforts at: reforming public 
institutions; establishing a right to education; and creating services 
for adults living with their families. The thinking quickly evolved--
reforming institutions, while important in the short run, was not the 
final goal. Offering everyone a life in the community became a focus of 
the advocacy agenda.
    By the early 1970s, parents and advocates were experiencing 
success. Several institutional law suits had been filed resulting in 
improvements in the institutions as well as expanded opportunities for 
people to move to the community. Advocacy efforts to achieve the right 
to education resulted in landmark legislation first in the States, and 
then at the national level with the adoption of the Education for All 
Handicapped Children Act (Public Law 94-142) in 1975.
    The right to education profoundly changed the experiences of 
children with developmental disabilities and the expectations of 
parents. Prior to the right to education, parents had two choices: to 
institutionalize their children--something routinely recommended by 
medical professionals--or to keep their child at home 24 hours-a-day 
without support or training. Many parents chose to keep their children 
at home rather than follow the advice of their doctor. But as their 
children grew, so too did the stress of being an unsupported care 
giver. When parents came looking for help, all that States had to offer 
was the institution. So with grief and often guilt, parents sought 
admission for their children.
    The right to education changed things. When schools opened their 
doors, admission of children to institutions dropped significantly--and 
the expectations of families rose just as quickly. If children could 
live with their families and go to school, then why wouldn't they live 
their entire life in the community?
    Private nonprofit agencies found in the baby boomers they hired in 
the 1970s and 1980s people who were ready and eager to develop 
community services. Founded by families, faith-based organizations, and 
community groups, these nonprofits turned a vision into a reality for 
thousands of people with disabilities. Opening group homes, vocational 
training programs, and recreational programs they championed the cause 
of people with intellectual and developmental disabilities and helped 
them become part of the community.
    And as they did so, they built more and more evidence that 
community living was, in fact, better for people who were once believed 
to need institutions. It was better for the person--and also better for 
their families who could now see them more frequently because the group 
homes were in the family's community rather than far away in a remote 
part of the State.
    The Department of Justice and Protection and Advocacy also played a 
significant role in the shift from institutions to the community. Using 
the Civil Rights of Institutionalized Persons Act, the Department of 
Justice conducted investigations and litigation to press for 
improvements in facilities with the most egregious rights violations. 
Protection and Advocacy organizations, often contacted by families of 
those living in institutions, conducted investigations, and initiated 
litigation when conditions did not improve.
    The result of these interventions was increased investment in the 
institutions to improve conditions, along with agreements to decrease 
the number of people in the institutions--and in many cases agreements 
to simply close facilities.
    Adoption of the Americans with Disabilities Act (ADA), reinforced 
by the Olmstead decision, provided additional tools for organizations 
to advocate for community services, and it solidified the right of 
people to live in the community. The ADA and Olmstead are landmark 
statutes that have validated the values of the DD systems in this 
country.
    Medicaid Funding and Federal Statutes. Statutes, regulations, 
funding, and technical assistance all play an important role in 
assisting States to make community opportunities available for people 
in institutions and on waiting lists.
    The Developmental Disabilities Act, the Americans with Disability 
Act, the Individuals with Disability Education Act, amendments to Title 
XIX of the Social Security Act, and so many other statutes have opened 
doors and served as vehicles for States to provide services in the 
community. Most recently new Medicaid State plan options and Money 
Follows the Person grants have provided States with even more tools.
    New Medicaid options have enabled States to expand services. While 
many States already had programs providing community services to 
individuals with developmental disabilities, usually called ``family 
supports,'' the advent in 1982 of the 1915(c) Home and Community-Based 
Services (HCBS) Medicaid waiver program meant the availability of 
Federal funds to support individuals in the community--and this drove 
rapid expansion of such programs. Allowing States to waive 
comparability (i.e., target specific populations) and to include a 
diverse set of non-medical supports and services in their 1915(c) 
programs gave them the opportunity to innovate and to build systems of 
support around the specific needs of individuals. Paradoxically, 
allowing States to cap the number of waiver participants has played a 
key role in the robust growth of the program, as States have been able 
to expand their community infrastructure, develop a broad array of 
services and the capacity to provide them, and build expertise in 
serving individuals with developmental disabilities in the community, 
while retaining the tools they need to manage financial risk and ensure 
the survival of HCBS programs. Because of this freedom to innovate, 
States have become experts at serving individuals in the community who 
not long ago would have been considered impossible to serve outside of 
an institution.
    Money Follows the Person (MFP) grants are assisting 27 of the 30 
grant States to move people with developmental disabilities out of 
institutions and into the community. The grants are directly focused on 
a key barrier States have faced to re-balancing their systems of long-
term supports and services. While we know that serving individuals in 
the community rather than in institutions is ultimately more cost-
effective, the up-front transition costs involved in moving individuals 
into the community can often act as a deterrent to State efforts. The 
CMS implementation of MFP focused on effective transition procedures 
and used, as one measure of success, the rate of return to facilities. 
The increased appropriation in the Patient Protection and Affordable 
Care Act (PPACA) will allow more States, and more individuals currently 
residing in institutions, to benefit from this valuable program.
    The recent addition of the 1915(i) State plan option for HCBS, the 
Community First Choice Option, and enhanced Federal Financial 
Participation (FFP) for those States whose investment in community 
services is less than 50 percent are all examples of recent Federal 
initiatives aimed at giving States more opportunities to provide 
services to individuals in community settings.
    The Centers for Medicare and Medicaid Services (CMS) has partnered 
with State agencies to explore ways in which CMS can assist States in 
advancing community services. The willingness of CMS leadership to meet 
regularly with the national associations representing various State 
agencies and to fund technical assistance to States is particularly 
noteworthy.
    A new generation of families with young children who have benefited 
from early intervention services, public education, medical and 
clinical advances, and more importantly, have raised their children in 
a world that is more accepting of people with disabilities, a world 
that sees the value in diversity, a world that can recognize the gifts 
that each person brings. They are demanding even more change.
    Families of young children not only reject institutions, they also 
reject community models that segregate or isolate their sons and 
daughters from typical life. They expect their sons and daughters to 
graduate from school, to get a job, to have meaningful relationships 
and to participate in the life of their community.
    The cost of institutional services has also been a factor in the 
transition from the institution to community services. While the cost 
of providing services to each individual differs as systems respond to 
individual needs, in the aggregate, it is far more cost-effective to 
customize support that builds on each individual's strengths and the 
natural supports they have in their family and community, than to 
create a residential model that provides comprehensive services whether 
an individual needs them or not. In addition, investment in models of 
service that do not provide an environment where people grow and 
achieve positive outcomes is questionable public policy.
    Cost is a factor because people with developmental disabilities do 
not enjoy an entitlement to services. Resources used inefficiently add 
numbers to the waiting list. The meager data on waiting lists indicates 
that over 100,000 people are waiting to be served.
    State Authority. The effectiveness with which States have 
transferred funds from the institutional system to the community is 
directly related to the fact that States own and operate the 
institutional facilities and have full authority to determine the 
number of certified beds and the disposition of resources. However, 
privately operated ICFs/MR and nursing homes, however, present a 
challenge to re-balancing the system because States do not have the 
authority to close beds other than in situations where the facilities 
or the providers do not meet certification standards.
    And most importantly, people with intellectual and developmental 
disabilities themselves have driven the change. An outgrowth of the 
movement of people from institutions to the community has been the 
growth of self-advocacy; i.e., people finding their voice and 
advocating for themselves. Self-advocates have survived indignities and 
often abuse in institutions and have demonstrated a level of courage, 
fortitude, and forgiveness that inspires everyone who hears their 
stories.

                           CHALLENGES REMAIN

    The barriers to creating community opportunities for people who 
remain in the institutions are the same barriers that have been with 
States since the 1980s.
    The Availability of State Funding has been and Continues to be a 
Barrier. While the Medicaid Home and Community-Based Services Waiver 
program provides significant Federal funding for services, it does so 
only on a matching basis--which requires States to fund up to 50 
percent of the cost of services, depending on each State's matching 
rate. The scope of programs competing for resources within each State's 
budget include education, transportation, and law enforcement, coupled 
with a constitutional requirement to balance annual budgets that 
affects the growth rate of Home and Community-Based Services. The 
current fiscal crisis, which has meant precipitous drops in State 
revenue, has recently compounded the problem. States have embraced the 
Medicaid Waiver program because it provides them with tools to manage 
growth within the confines of the State's economic conditions. During 
times of economic gains, States will typically expand their waiver 
programs. Conversely, during times of economic distress, they will 
curtail growth.
    Opposition from employees has been a factor in downsizing and 
closing of institutions. An institution may be the primary employer in 
a geographical area. In fact, some were established in rural areas many 
years ago precisely for the purpose of providing employment. Employees 
often enjoy robust wages and benefits that are difficult to replicate 
in other fields or in the private sector. It should come as no surprise 
that employees often oppose the downsizing and closure of facilities 
and that their opposition includes solicitations of support from 
legislators in their districts. Strategies used by States to overcome 
this barrier, such as guaranteeing employment in other State operations 
or in-State-operated community services, are not always feasible. Each 
facility closure has been accomplished by employing multiple strategies 
crafted uniquely for that particular facility.
    Opposition from families is another challenge--and the most complex 
one. What we know from 40 years of experience is that people do better 
in the community than in institutions. No matter their age, they learn 
new skills, develop new competencies and appear to be much happier. We 
know this from research which has established that all individuals make 
gains but those with the most significant disabilities make the most 
gains after moving to small community residences.\4\ But just as 
importantly, the thousands of provider staff, clinicians, and leaders 
in our field know this--because they have witnessed it.
---------------------------------------------------------------------------
    \4\ Bradley, V.J., & Conroy, J.W. The Pennhurst Longitudinal Study 
Executive Summary Philadelphia: Temple University Developmental 
Disabilities Center, 1985.
---------------------------------------------------------------------------
    We know that, regardless of the intensity of the opposition from 
families, once the person moves to the community the opposition melts 
and the family sees the benefits of community living. In fact, rarely 
has any family member requested the return of their son, daughter, 
sister or brother to the institution.
    Opposition can be based on any number of assumptions. One is that 
the services in the community will be discontinued over time, leaving 
the family entirely responsible for providing both support and living 
arrangements. The fact that the Medicaid Waiver is funded with 
precisely the same funding sources as the institution--and that most 
community service systems are now over 50 years old--can assuage some 
of those fears.
    Opposition based on the assumption that their family member can't 
live in the community can be addressed by taking families to visit 
community services that support people with the same level of needs as 
their family member. Arranging meetings for family members with people 
living in the community can also help to address those fears. In the 
past it has been said that for every person living in an institution, 
there is one in the community. Today it would not be an exaggeration to 
say that for every person living in an institution, there are thousands 
living in the community.
    Opposition based on fear of abuse and neglect requires a frank 
discussion that acknowledges that abuse and neglect have been serious 
problems in institutions and can be an equally serious problem in the 
community. States must explain the processes they have built into 
community systems to prevent abuse and neglect, to detect it as soon as 
it occurs, to inform family members and to respond promptly.
    The institution is often perceived as better able to provide 
intense and specialized services. It is important to educate families 
about the impact of environment and experience on learning and that, 
while the institution may have specialists, the environment and the 
routines of the institution lack the real life experiences of daily 
living. Activities as simple as buying weekly groceries and making 
meals, going to the bank or post office, taking in a movie, or greeting 
neighbors are the experiences through which people develop competencies 
and social skills. The availability of medical services may also be a 
concern, and can be addressed by involving families in establishing a 
relationship with medical professionals in the community prior to their 
family member leaving the facility.
    The absence of oversight to assure quality is often incorrectly 
identified as a weakness in the community system. What is often not 
recognized is the considerable attention the Centers for Medicare and 
Medicaid Services and the States have placed on quality assurance. The 
application States must complete to obtain approval to operate a Home 
and Community-Based Services Waiver requires States to provide detailed 
descriptions of provider qualifications, oversight functions, and 
quality management practices. States are then required to report the 
findings from their oversight activities on an annual basis and 
approval to continue to operate a Medicaid Waiver is contingent upon 
assuring CMS of the health and safety of waiver participants.
    Last, there are those who say that families should have absolute 
authority to make any decisions that affect their family member, and 
that any government participation constitutes interference with the 
family relationship. The central question that should be the primary 
focus of both family members and State professionals and the basis for 
any decisionmaking is ``what would benefit the person most?'' And, it 
is this question that drives State agency professionals to continue to 
create community service opportunities for people living in 
institutions. Having assisted hundreds of people to move from 
institutions to the community, having witnessed their growth and 
development and the satisfaction that families inevitably experience, 
professionals are bound by professional ethics and compelled by their 
personal commitment to pursue community options for people living in 
institutions.
    It would be a far easier path to simply let the issue go for the 
36,000 people still living in institutions, to avoid asking families to 
reopen the decision they made to institutionalize their family member 
30 or even 50 years ago. But knowing what is possible and what is 
right, professionals working in State agencies cannot do that.
    There is another compelling reason for public officials to stay the 
course of reducing the number of people in institutions: the need to 
manage public resources, to manage long-term care systems, in as cost-
effective a manner as possible. Large facilities are generally the most 
costly service model in State systems. States that have significantly 
reduced the number of people in facilities have made more progress in 
expanding services for people in the community. Savings from reducing 
or eliminating the use of the most expensive model of care are an 
important resource for those on the waiting list.
    While opposition can be intense, there are also many stories of 
family groups working hand-in-hand with States to close institutions 
and participating actively in the development of community services. 
The State of Wyoming is a model of what may be one of the best closure 
processes in the country, and won the NASDDDS Censoni award for 
outstanding achievement in public services. As is so often true, the 
story begins with litigation. But the path Wyoming took to respond to 
that litigation was not to oppose the plaintiffs and argue the case out 
in court for 10 years, but instead to seize the opportunity to build a 
robust community service system where there had been none, to serve not 
only the people from the Wyoming State Training School but also people 
who were already living in the community with their families and were 
at risk of institutionalization. Wyoming was among the first States to 
demonstrate that the thoughtful development of a community system with 
a wide-range of services eliminates the need for an institution.
    Preventing Institutionalization: The Waiting List Challenge. There 
is no entitlement to Home and Community-Based Services and States are 
restricted in their capacity to expand services. Therefore waiting 
lists are a reality in most State developmental disability systems. 
Advocacy efforts, law suits, a booming economy, and funds available 
from the closure of institutions have allowed many States to expand 
services for people on the waiting list over the past two decades. But 
few States have achieved enough growth that important services can be 
made available promptly to every eligible applicant upon request. 
Emergencies and crises become the entry point into Home and Community-
Based Services systems for many. There is no reliable national data on 
the number of people waiting for services but we know that in many 
States the number is in the thousands and the wait can be as long as 10 
years. Many States do not maintain a count of people on the waiting 
list for fear of creating expectations they cannot meet.
    The barrier to meeting the needs of people on the waiting list are 
purely financial. The inability to provide State funds to earn Federal 
matching dollars controls the pace of growth.
    The Choice Paradox. The statutory basis for community services is 
the right to receive services in an institution--an Interim Care 
Facility for the Mentally Retarded (ICF/MR). When individuals apply for 
community services, they must first formally ``opt-out'' of receiving 
services in an institution and affirmatively choose Home and Community-
Based Services. This is called choice. However, we know from the work 
of Richard H. Thaler and Professor Cass R. Sunstein, authors of Nudge, 
that in presenting individuals with choice, the decision process can be 
structured in a way that will ``influence people's behavior in order to 
make their lives longer, healthier and better.'' For instance, an 
``opt-out'' decision process is often recommended for the 
administration of employee retirement programs because it results in 
more people enrolling in a retirement program which will presumably 
make their life better when they reach retirement age.
    What is the message in requiring individuals to opt-out of 
institutional services in order to receive Home and Community-Based 
Services? The message is a mixed one because it promotes the 
institution even for those who desire and are requesting services in 
the community. More than one State Developmental Disability Director 
has identified this ``quirk'' in the Medicaid program as problematic 
when promoting Home and Community-Based Services.

   THE GOAL OF FULL INCLUSION IN COMMUNITY LIFE THROUGH THE DELIVERY 
                        OF HIGH QUALITY SERVICES

    Creating community opportunities is only a beginning. The goal of 
our DD services systems is the full participation of people in the life 
of their community. A real job at competitive wages, membership in 
civic organizations, knowing the neighbors, and having friends are the 
real measures of our success.
    Services must be designed to do more than maintain people in the 
community. They must be of high-quality and designed to achieve real 
life outcomes. People working in developmental disability systems 
across this country have pioneered strategies to assist people with 
disabilities to achieve a life of full inclusion and participation in 
their communities. Individualized planning, supported employment, self-
determination, positive behavioral practices, and more recently person-
centered planning, individualized budgeting, and consumer-directed 
services have been adopted by support infrastructures for other 
populations, including mental health and aging systems.
    Measuring quality has been a long standing priority for States. In 
1997, NASDDDS launched the National Core Indicators Program (NCI) in 
partnership with the Human Services Research Institute (HSRI). NCI is a 
set of system performance indicators organized into domains such as 
Health, Welfare, and Rights which measure the performance of each State 
and makes benchmarking between and among States possible.

                               APOLOGIES

    Recently the State of Minnesota became the sixth State in the 
Nation to issue an apology to people with developmental disabilities 
for the years of incarceration, abuse, and neglect in State-operated 
institutions. Such an apology is an indication of a sea change in 
attitudes. States are apologizing to a group of people who in very 
recent history were stripped of all rights as citizens, who were denied 
an education and often medical treatment, who were sterilized without 
consent and were presumed to have nothing to offer society. These 
apologies, coupled with the almost complete abandonment of the term 
``mental retardation'' from the names of State agencies are indications 
that our public systems are about more than providing services; they 
are about respecting the rights and dignity of people with 
developmental disabilities and creating opportunities for full 
participation in community life.
    Change has reached all 50 States and the District of Columbia. They 
are all progressing--each at a different pace--but they are all making 
progress toward comprehensive systems of community supports and 
services.

    The Chairman. Thank you very much, Ms. Thaler.
    Now we'll wind up with Mr. Buckland. Kelly, welcome. Please 
proceed.

   STATEMENT OF KELLY BUCKLAND, EXECUTIVE DIRECTOR, NATIONAL 
                 COUNCIL ON INDEPENDENT LIVING

    Mr. Buckland. Thank you, Senator. It's good to see you 
again. Mr. Chairman, Ranking Member Enzi and distinguished 
members of the committee, good afternoon and thank you for the 
opportunity to speak today on behalf of the National Council on 
Independent Living. NCIL is the longest running national cross-
disability, grassroots organization run by and for people with 
disabilities. Founded in 1982, NCIL represents thousands of 
organizations and individuals, including Centers for 
Independent Living, Statewide Independent Living Councils, 
individuals with disabilities, and other organizations that 
advocate for the human and civil rights of people with 
disabilities throughout the United States.
    Since its inception, NCIL has carried out its mission by 
assisting member CILs and SILCs in building their capacity to 
promote social change, eliminate disability-based 
discrimination, and create opportunities for people with 
disabilities to participate in the legislative process to 
effect change. NCIL promotes a national advocacy agenda set by 
its membership and provides input and testimony on national 
disability policy.
    NCIL currently works on a wide array of disability rights 
issues, including passage of the Community Choice Act, which 
will provide many people with disabilities the opportunity to 
choose where and how they receive personal assistance services 
in their homes and communities.
    America is home to 391 centers for independent living, 330 
branch offices, and 56 statewide independent living councils. 
From 2004 to 2008, centers for independent living moved 11,451 
people out of nursing homes and other institutions, saving the 
State and Federal Governments over $200 million. This last 
year, 2008 to 2009, they moved out an additional 3,000 people. 
That makes about 15,000 people they've moved out in that time 
period.
    Centers also provided the core services of advocacy, 
information and referral, peer support, and independent living 
skills training to over 3 million individuals with 
disabilities; and centers attracted over $618 million through 
private, State, local, and other sources annually.
    In that same time period, centers for independent living 
provided other services to over 659,000 people with 
disabilities, including assistance with housing and 
transportation, personal assistance, employment, and 
technology.
    Here are some examples of how NCIL members assist people 
with disabilities to live independently in the community. 
Access Living in Chicago made 61 home modifications and placed 
45 people in housing and transitioned 38 people to the 
community. Independent Living Resources of Greater Birmingham 
provided 65 home modifications, eliminating barriers to 
independence. REACH Resources CILs in Texas transitioned 33 
nursing home residents, saving the State and Federal Government 
$495,000. In Rochester, the Center for Disability Rights and 
the regional CIL transitioned or diverted 65 individuals, 
saving New York $4,041,914. Three Rivers Center for Independent 
Living in Pennsylvania provided housing services to nearly 400 
consumers, reducing homelessness and discrimination. And the 
ENDependence Center of Northern Virginia persuaded Fairfax 
County to require grantees to ensure ADA compliance.
    In recent health care reform legislation, NCIL stated its 
priorities in an effort to integrate the needs of the 
disability community into the legislation, including language 
to end the institutional bias in Medicaid. It was our 
unwavering goal to have the language of the CCA in the final 
reform bill, and our policy to pursue a compromise only if it 
became clear that the CCA would not be part of the reform 
legislation.
    Over the course of developing the legislation, it became 
very clear to us and disability advocates in Washington and 
throughout the country that we were not going to get CCA into 
the legislation. Therefore we compromised on including the core 
principles of CCA into the Community First Choice Act. This was 
a major step forward to ending institutional bias and NCIL 
wants to thank you, Mr. Chairman, and all the other members of 
the committee for your support and hard work to keep it in the 
legislation. Now it's our responsibility to convince the States 
to adopt that option.
    If adopted by the State, the Community First Choice Option 
would provide individuals with disabilities who are eligible 
for nursing homes and other institutions with options to 
receive community-based services. CFC would support the 
Olmstead decision by giving people the choice to leave 
facilities and institutions for their own homes and 
communities. It would also help address State waiting lists for 
services by providing access to community-based services. The 
option does not allow caps on the number of individuals served, 
nor allow waiting lists for these services. Congress provided a 
significantly enhanced Federal match, or FMAP, as you talked 
about earlier, Mr. Chairman.
    NCIL fully supported the Community First Choice Option as 
part of the health care reform legislation, but we continue to 
stand firmly behind efforts to see that the Community Choice 
Act is passed as a stand-alone bill. We realize the limitations 
of the CFC, being only an option to States. We also realize 
that all 50 State governments are different and our brothers 
and sisters in institutions will not be freed in each and every 
State.
    The CFC will lay down a significant foundation and will 
move our Nation closer to equality, but the CFC will leave the 
decision to do the right thing up to States, and many States 
will fail their constituents.
    In fact, NCIL receives reports from centers for independent 
living and statewide independent living councils from every 
corner of this country that things are not getting better; in 
fact, things are getting much more difficult for people with 
disabilities to get out of institutions and live in the 
community. States are experiencing the worst economic downturn 
since the Great Depression and they are being forced to make 
some very tough decisions regarding their budgets. 
Unfortunately, this has resulted in many of them significantly 
cutting their Medicaid budgets. Because of the current 
institutional bias in the program, most of them are cutting 
services that support people with disabilities in the community 
because they believe that they are, ``optional.''
    This is why we will continue to push for the Federal 
Government to end the institutional bias forever and mandate 
the States offer the Medicaid program to allow people their 
choice to get their long-term services and support in their own 
home or whatever setting they choose. We know that when States 
make these types of cuts they violate the Olmstead decision. 
However, there has been very little enforcement of Olmstead by 
the Federal Government. It is very encouraging to NCIL to see 
this Attorney General vigorously going after States that 
violate the decision.
    The budgets that many States set this past winter will go 
into effect in just a few days. NCIL is concerned that when 
these budgets go into effect States will be in violation of 
Olmstead, and on this anniversary of the decision NCIL calls on 
the Federal Government to point these violations out to States 
and dedicate the necessary resources to enforcement.
    Sadly, NCIL's vision of equality has not yet been fully 
realized. Many people with disabilities remain imprisoned in 
nursing homes and our civil rights laws have been undermined 
and devalued. As a membership organization, NCIL needs the 
support of all of our Nation's advocates in order to achieve 
our goals and advance the disability rights movement. We hope 
the U.S. Senate, the House, and the Administration will join us 
in our quest.
    Thank you, Mr. Chairman.
    [The prepared statement of Mr. Buckland follows:]

                  Prepared Statement of Kelly Buckland

    Mr. Chairman, Ranking Member Enzi, distinguished members of the 
committee, good afternoon and thank you for the opportunity to speak 
today on behalf of the National Council on Independent Living. NCIL is 
the longest-running national cross-disability, grassroots organization 
run by and for people with disabilities.
    Founded in 1982, NCIL represents thousands of organizations and 
individuals including Centers for Independent Living (CILs), Statewide 
Independent Living Councils (SILCs), individuals with disabilities, and 
other organizations that advocate for the human and civil rights of 
people with disabilities throughout the United States.
    Since its inception, NCIL has carried out its mission by assisting 
member CILs and SILCs in building their capacity to promote social 
change, eliminate disability-based discrimination, and create 
opportunities for people with disabilities to participate in the 
legislative process to affect change. NCIL promotes a national advocacy 
agenda set by its membership and provides input and testimony on 
national disability policy.
    NCIL currently works on a wide array of disability rights issues, 
including passage of the Community Choice Act which will provide many 
people with disabilities the opportunity to choose where and how they 
receive personal assistance services in their homes and communities.
    America is home to: 391 Centers for Independent Living; 330 branch 
offices; and 56 Statewide Independent Living Councils.
    From 2004-2008, Centers for Independent Living moved 11,451 people 
out of nursing facilities and other institutions, saving State and 
Federal Governments over $200 million;
    Centers provided the core services of advocacy, information and 
referral, peer support, and independent living skills training to over 
3 million individuals with disabilities; and Centers attracted over 
$618 million through private, State, local and other sources annually.
    In that same period CILs provided other services to over 659,000 
people with disabilities, including assistance with housing and 
transportation, personal assistants, employment, and technology.
    Here are some examples of how NCIL members assist people with 
disabilities to live independently in the community.
    Access Living of Chicago made 61 home modifications, placed 45 
people in housing, and transitioned 38 people to the community.
    Independent Living Resources of Greater Birmingham provided 65 home 
modifications, eliminating barriers to independence.
    REACH Resource CILs in Texas transitioned 33 nursing home 
residents, saving the State and Federal Government $495,000.
    In Rochester, the Center for Disability Rights and the Regional CIL 
transitioned/diverted 65 individuals, saving NY $4,041,914.
    Three Rivers CIL in Pennsylvania provided housing services to 
nearly 400 consumers, reducing homelessness and discrimination.
    The ENDependence Center of northern Virginia persuaded Fairfax 
County to require grantees to ensure ADA compliance.
    Arizona Bridge to IL received a Community Hero Award from the city 
of Phoenix for its Home Modification Program.
    In the recent health care reform legislation, NCIL clearly stated 
its priorities in an effort to integrate the needs of the disability 
community into the legislation, including language to end the 
institutional bias in Medicaid. It was our unwavering goal to have the 
language of the CCA in the final reform bill, and our policy to pursue 
a compromise only if it became very clear that the CCA would not be a 
part of the reform legislation. Over the course of developing the 
legislation it became very clear to disability advocates in Washington 
and throughout the Nation that we would not get CCA into the 
legislation. Therefore we compromised on including the core principals 
of CCA into the ``Community First Choice Act. This was a major step 
forward to ending the institutional bias and NCIL thanks each of you 
for your support and hard work to keep it in the legislation. Now it is 
our responsibility to convince the States to adopt the option.
    If adopted by a State the Community First Choice (CFC) Option would 
provide individuals with disabilities who are eligible for nursing 
homes and other institutional settings with options to receive 
community-based services. CFC would support the Olmstead decision by 
giving people the choice to leave facilities and institutions for their 
own homes and communities with appropriate, cost-effective services and 
supports. It would also help address State waiting lists for services 
by providing access to a community-based benefit within Medicaid. The 
option does, not allow caps on the number of individuals served, nor 
allow waiting lists for these services. A significant enhanced Federal 
Medical Assistance Percentages (FMAP) is provided to encourage States 
to select this option.
    The Community First Choice Option:

     Amends Medicaid to allow State Medicaid plan coverage to: 
community-based 
attendant services and supports for certain Medicaid-eligible 
individuals.
     Services under this option would include services to 
assist individuals with activities of daily living (ADLs), instrumental 
activities of daily living (IADLs), and health-related tasks through 
hands-on assistance, supervision, or cueing. ADLs include eating, 
toileting, grooming, dressing, bathing, and transferring. IADLs include 
meal planning and preparation; managing finances; shopping for food, 
clothing, and other essential items; performing essential household 
chores; communicating by phone and other media; and traveling around 
and participating in the community.
     Health-related tasks are defined as those tasks that can 
be delegated or assigned by licensed health-care professionals under 
State law to be performed by an attendant. Services also include 
assistance in learning the skills necessary for the individual to 
accomplish these tasks him/herself; back-up systems; and voluntary 
training on selection and management of attendants. Certain 
expenditures would be excluded, including room and board; services 
provided under IDEA and the Rehabilitation Act; assistive technology 
devices and services; durable medical equipment; and home 
modifications.
     Services must be provided in a home or community setting 
based on a written plan.
     Services must be made available statewide and must be 
provided in the most integrated setting appropriate for the individual.
     Services must be provided regardless of age, disability, 
or type of services needed.
     States will establish and maintain a comprehensive, 
continuous quality assurance system, including development of 
requirements for service delivery models; quality assurance to maximize 
consumer independence and consumer control; and external monitoring; 
along with other critical State and Federal responsibilities/
requirement.
     Service delivery models must include consumer-directed, 
agency-based, and other models, along with requirements to comply with 
all Federal and State labor laws.
     States would be required to establish a Development and 
Implementation Council to work with the State in developing and 
implementing the State plan amendment necessary in order to provide the 
services. The majority of Council members must be individuals with 
disabilities, elderly individuals, and representatives of such 
individual and must collaborate with, among others, providers and 
advocates.
     States would cooperate in reporting to Congress.
     CFC services would not affect the States' ability to 
provide such services under other Medicaid provisions.
     Provision to collect data regarding number of people 
receiving services, dollars spent, and procedures for consumer control.

    NCIL fully supported the CFC as part of the healthcare reform 
legislation, but we continue to stand firmly behind efforts to see that 
the Community Choice Act is passed as a stand-alone bill. We realize 
the limitations of the CFC, being only an option to States. We realize 
that all 50 State governments are different and our brothers and 
sisters in institutions will not be freed in every State.
    The CFC will lay down a significant foundation, and will move our 
Nation closer to equality, but the CFC will leave the decision to do 
the right thing up to States, and many States will fail their 
constituents.
    In fact, NCIL receives reports from CIL's and Statewide Independent 
Living Councils from every corner of this country that things are not 
getting better. It is getting much more difficult for people with 
disabilities to get out of institutions and live in the community. 
States are experiencing the worst economic downturn since the great 
depression and they are being forced to make some very tough decisions 
regarding their budgets. Unfortunately this has resulted in many of 
them significantly cutting their Medicaid budgets. Because of the 
current institutional bias in the program, most of them are cutting 
services that support people with disabilities in the community because 
they believe that they are ``optional.''
    This is why we will continue to push for the Federal Government to 
mandate that States that offer the Medicaid program allow people the 
choice to get their long-term services and supports in their home or 
whatever setting they choose.
    We know that when States make these types of cuts, they violate the 
Olmstead decision, however there has been very little enforcement of 
Olmstead by the Federal Government. It is very encouraging to NCIL to 
see this Attorney General vigorously going after States that violate 
the decision.
    The budgets that many States set this past winter will go into 
effect in just a few days. NCIL is concerned that when these budgets go 
into effect States will be in violation of the Olmstead decision, and 
on this anniversary of the decision, NCIL calls on the Federal 
Government to point these violations out to States and dedicate the 
necessary resources to enforcement.
    Sadly, NCIL's vision of equality has not yet been fully realized. 
Many people with disabilities remain imprisoned in nursing homes and 
our civil rights laws have been undermined and devalued. As a 
membership organization, NCIL needs the support of all our Nation's 
advocates in order to achieve our goals and advance the Disability 
Rights Movement.
    We hope the United States Senate, House and Administration will 
join us in our quest!

    The Chairman. Thank you, Mr. Buckland, and thank all of our 
panel for great statements, both the verbal and the written 
statements.
    I'll start with Mr. Bernstein. Mr. Bernstein, in your 
written testimony--and I think you also mentioned it in your 
verbal statement, about deconstructing the systematic barriers 
and challenging the vested interests that sustain segregation 
and low expectations. Talk to me about that. What do you mean 
by that?
    Mr. Bernstein. I'm actually very happy you asked about 
that, because I'd like to frame it this way. We are very, very 
pleased that the Department of Justice has joined with the 
advocacy community and it begins to ask the question first, not 
what are the conditions in the institution, but why are people 
here to begin with. When you begin asking that question, it 
takes you all kinds of places.
    What you find out, for instance, is that hospitals remain 
open because they're big employers and within States there's 
political pressure for them to remain open unnecessarily and 
for beds to be filled there. What we find is stories of 
operators of facilities for people with serious mental illness 
who troll homeless shelters, because people are treated as 
commodities and it's a business. What we find is that in some 
States--in one very large State that I'd prefer not to mention, 
every year a bill would come up where it's demonstrated that 
the State could save millions of dollars by moving people out 
of institutions for mental disease that are privately owned and 
into integrated programs that are funded by Medicaid, and every 
year the bill fails.
    The industry that profits from dependency and isolation has 
developed political prowess and they use it. I think as was 
alluded to earlier, in our view it's the role of government to 
rise above that and to look out for the best interests of its 
citizens.
    So when I talk about deconstructing systems, that's one 
piece. The other piece, which is more at a Federal level, is 
we've heard today about all kinds of wonderful new initiatives 
that reinforce community living, reinforce choice, personal 
control, ownership of one's own home, but these are piecemeal 
solutions. At some point we, as a nation, are going to need to 
look at what are we paying for and why do we continue to pay 
for solutions that we know are archaic and segregating. I think 
those are all pieces that we really don't talk enough about.
    The Chairman. I guess that we started this segregation 
hundreds of years ago and it just became such an integral part 
of society that vested interests grew up around it and those 
vested interests continue on. That's not to say that we haven't 
made a lot of progress. As Ms. Thaler pointed out, we have made 
progress in the recent past. But we still have a long way to go 
and we still don't have, as Mr. Buckland points out, a mandate. 
It's still sort of up to the States. Maybe yes, maybe no. We 
have waivers, and we have waiting lists that are so long that 
people get disappointed waiting on them.
    Hanging over all of this, as one who has been sponsoring 
MICASA for so many years, the mandate part of it, is the budget 
implications, how much is it going to cost. I've been arguing 
this for 15 years at least on this aspect, that I think that 
CBO has it wrong in terms of how they look at it. Who was it 
who said look at the longer term? If you look at it maybe in 1 
year, 2 years, maybe so. But if you look at it in terms of a 
continuing obligation of our government to do what we said in 
the ADA and what Olmstead said, if we look at it as a 
continuing obligation over a longer period of time, the 
economics become on our side, as you might say, much cheaper. 
As I always say, if you look at the economics, not to say 
anything about certain quality of life and giving people 
choices to live independently.
    But anyway, about deconstructing the systematic barriers, 
that's been one of the real tough things in this whole thing. 
Well, Mr. Knight was a subject of that systematic barrier that 
Mr. Knight had when he encountered that. Again, you were--was 
it 2 years you were in, 2 years? Is that right, Mr. Knight?
    Mr. Knight. Yes, sir.
    The Chairman. Two years that you kept trying to get out. It 
took you 2 years.
    Mr. Knight. Yes, sir.
    The Chairman. Of constant effort. Well, that just shouldn't 
be.
    Mr. Knight. No.
    The Chairman. Obviously, Mr. Knight is perfectly capable of 
living in the community, and he's proven that. He worked for 
many years by himself.
    Mr. Knight. Before that I'd lived nearly all my life by 
myself.
    The Chairman. Exactly, precisely.
    So again, you point to these things and you say, ``Why 
can't we finally get over that hurdle?'' Well, we are trying 
with the Community Choice Option, that we've got to get the 
States to get into. I asked Ms. Mann earlier about the 6 
percent bump-up, will that help? We hope that will be 
sufficient to do that.
    I think maybe that, coupled with a new, aggressive role on 
the part of the Department of Justice to go after those that 
are not abiding by the Olmstead decision, and you get the 
carrot and the stick. You get the carrot with the 6 percent and 
you get the stick with maybe the Department of Justice's 
becoming more active, with the Bazelon Center of course always 
being actively involved in cases dealing with mental health and 
disabilities, that perhaps we can see after next year a more 
rapid deconstruction of this.
    Thank you.
    Mr. Buckland. Thank you. We're very hopeful.
    The Chairman. We hope. We hope.
    Mr. Buckland. The planets are in alignment.
    The Chairman. Pardon?
    Mr. Buckland. The planets are in alignment for that.
    The Chairman. Well, I sure hope so. I sure hope so.
    Listen, I took more time than I meant to talking rather 
than asking questions. But Senator Casey is here and I wanted 
to go to Senator Casey.

                       Statement of Senator Casey

    Senator Casey. Mr. Chairman, thank you very much for the 
hearing. I'm sorry I'm late here for the second panel.
    I want to first of all commend our chairman for the 
hearing, but also in a larger sense for what he's been doing 
all these years on so many issues, and especially those that 
relate to the subject matter of this hearing. So I want to 
thank Senator Harkin for that and the work of this committee.
    I wanted to start with a question for Nancy Thaler. You 
worked in Pennsylvania for I guess the Department of Public 
Welfare for 10 years?
    Ms. Thaler. Sixteen years.
    Senator Casey. Sixteen, OK. I'll get my math right. One of 
the main features of your testimony was how to deal with 
opposition from families and being able to make what has to be 
a very difficult transition. I know you addressed it in your 
testimony, but I was struck in the section that begins with 
opposition from families being another challenge.
    You say,

          ``What we know from 40 years of experience is that 
        people do better in the community than in institutions, 
        no matter their age. They learn new skills, develop new 
        competencies, and appear to be much happier.''

    And then you go on from there.
    I know you refer to a couple of approaches or strategies 
that help you do that. Can you highlight those again, because I 
do remember going back in Pennsylvania--gosh, I don't know what 
year it was, but 10 or 15 years, where we are, and still are, I 
guess, all these years later--I can remember this being debated 
in the 1960s and the early 1970s, going back that far. But that 
process of de-institutionalization and, even though the 
evidence was very compelling that it was the best approach for 
individuals, that families had a hard time with it, and at 
times our State didn't do a very good job of recognizing that.
    You had these horrific situations where people would--I 
remember one in particular--be put on a bus to be taken out of 
the institution, and the windows were obscured so that families 
couldn't see them, and there were State police, and it was a 
disaster of a process.
    I wanted to have you highlight some of the strategies that 
you know work, so that families can make this transition with 
at least a lot more peace of mind.
    Ms. Thaler. The strategies--and there are many of them--
work 99 percent of the time. There are instances where no 
amount of strategizing or working with families or talking 
things through will achieve agreement. I think that's the 
situation that you're referring to.
    If we approach families who made a decision 20, 30 years 
ago with a level of understanding and respect for their pain 
and anguish and spoke to them from that point of view, we win 
and earn their trust. Many of those families did not want to 
put their sons and daughters into institutions and they have a 
sense of guilt and sorrow and pain over that. When we invite 
them to consider community placement, we re-open all of that 
pain up.
    The professionals and people who work with families need to 
first recognize that and take the time that's necessary to win 
their trust and confidence and then show them, show them how it 
works, show them where it works, introduce them to other 
families who are satisfied and happy.
    In the situation you're talking about, one of the things we 
learned is that the more we could give the families in the 
process, the more confident they were. So when they could 
choose which provider, choose what part of town, be involved in 
identifying the home, even engaged in hiring the staff, their 
confidence grew, and they turned out to be champions of 
community services.
    But time and respect are important. Oftentimes closures 
have target dates that truncate the process, which we have to 
be careful not to do.
    Senator Casey. I know in our State, in Pennsylvania, there 
are still, by one estimate, as many as over 1,200 people still 
living in five State-run institutions.
    One line from your testimony really struck me as well, 
about one of the fears that families have is when you move an 
individual out of an institution there'll be less oversight, 
which is not an unreasonable or not an illogical conclusion to 
reach. We all think in terms of oversight being better, I 
guess, if you have a finite structure or location. That makes 
sense.
    But you say in the testimony, ``What is often not 
recognized is the considerable attention that the Centers for 
Medicare and Medicaid Services and the States have placed on 
quality assurance.'' I think that's an accurate assessment, 
although we've got to prove it and we've got to be vigilant 
about it.
    Ms. Thaler. Yes.
    Senator Casey. I know my time's up, but I do want to thank 
all of the witnesses for being here. Mr. Knight, thank you for 
sharing what can only be very personal experiences in your own 
life.
    Mr. Knight. Thank you.
    Senator Casey. Thank you very much.
    The Chairman. Just responding to Senator Casey on the 
oversight, again what Mr. Knight said in his testimony--I was 
just reading it again--that the institution that he was in, he 
said that you didn't have your own things, there was no 
privacy, your personal belongings are not safe, things like 
electronics, food and money were stolen, residents screaming 
all night long, you have to eat what they prepare for you, the 
floors and bathrooms had urine all over them, ET cetera, ET 
cetera. So that was institutional care.
    Mr. Knight. Now they've rebuilt it.
    The Chairman. Yes?
    Mr. Knight. Now they've rebuilt it, so I don't know how it 
is now. It might be different now.
    The Chairman. It's still not as good as living on your own, 
though.
    Mr. Knight. No. Oh, no.
    The Chairman. Not at all.
    Mr. Knight. I'll still live on my own, not in there.
    The Chairman. Absolutely.
    Ms. Thaler, one thing I wanted to follow up with you is 
that I understand there's a trend in some States--and I said 
that at the earlier panel, but I don't think I followed up on 
it enough--to build or renovate segregated residential 
facilities. Is that happening? I need more information on that. 
Why would that be happening?
    I can see the pause, this deconstructing. But to be 
actually building more facilities--is that happening?
    Ms. Thaler. Yes. Not in a lot of States, but it is 
happening in some places. Despite our generally universal 
understanding that community services are what people want and 
where people are better off, there continues to be support for 
institutional services, minimal but some advocacy support, and 
political support.
    So we have a handful of States who have launched the 
building of buildings on the grounds of State institutions, 
either new buildings or replacement buildings, oftentimes then 
administered by the administration that follows them, that are 
sort of stuck with them. But they're anomalous events in time 
that have to do with the forces locally that still believe we 
need institutions.
    The Chairman. Well, I've got to look at that more closely. 
This just can't be done. I mean, that's absolutely going in the 
wrong direction, and you just build up a whole new set of 
things that have to be deconstructed over time.
    Ms. Thaler. I might add that the Office of Civil Rights and 
the protection and advocacy agencies have been on this, Mr. 
Chairman.
    The Chairman. Good. The P and A's are great.
    Kelly, every time I see a center for independent living, 
they're really good. They do good work, and I don't mean just 
to say that to you, but they get things done. What's so unique 
about them? Why are they so successful?
    Mr. Buckland. Well, Senator, I think it's because they are 
run by people with disabilities and they've experienced what we 
just heard from Mr. Knight. I think a lot of people who've 
worked in centers have gone through very similar experiences 
and they understand this. That's what I think makes them 
unique.
    But thank you for recognizing that. I appreciate it.
    The Chairman. They do, they just get things done. They're 
very, very, very good at that.
    Now, you do a lot of work with the P and A system, don't 
you, Mr. Bernstein?
    Mr. Bernstein. Yes, we do.
    The Chairman. Do you share Ms. Thaler's opinion of them, 
that they're very aggressively pursuing some of the--not 
opinion, her view--that they are aggressively pursuing some of 
these rebuilding of segregated facilities?
    Mr. Bernstein. The P and A's are on it. Like most 
protection systems, they're very thinly spread and have huge 
demands on them. But notwithstanding their efforts and our 
efforts, one State is building a 620-bed psychiatric hospital 
right now, and other States are actually declaring parts of 
existing hospitals to be the community, and they're making 
community placements that are on the grounds of the hospitals. 
So there are all kinds of things going on that one wouldn't 
expect 20 years after the ADA was enacted.
    The Chairman. Is this publicly known, what State? I mean, 
is it a secret?
    Mr. Bernstein. The 620-bed State, Oregon.
    The Chairman. Oregon?
    Mr. Bernstein. Yes.
    The Chairman. Well, I just heard that Oregon earlier was 
one of the good States.
    Mr. Bernstein. It is. But part of the issue--and again, 
this is a conversation we haven't had as a nation. A State 
legislature can get its arms around building a facility to 
correct problems in the State. They understand that. To talk 
about community mental health, where the programs are dispersed 
and you can't photograph it, it's a harder sell. So I think 
that's part of the dynamic here.
    The Chairman. It seems odd that I heard earlier that Oregon 
was one of the leading States in getting people out of 
institutions, but you tell me Oregon is now building a 620-bed 
psychiatric hospital.
    Mr. Bernstein. And another 300-bed one down the road. Part 
of this has to do with forensic patients, who really for no 
good reason get sucked up into the correctional system and then 
are transferred to mental health.
    Let me say, Oregon has a very, very fine community mental 
health system, but it's a shell of what it used to be. Things 
are de-funded because of the economic times.
    The Chairman. If they're de-funded, how can they be funding 
a 620-bed unit? That costs a lot of money.
    Mr. Bernstein. It absolutely does.
    The Chairman. Find out for me. Get me some information on 
this. I wonder if Mr. Merkley knows this. I've got to talk to 
Senator Merkley about this, because we've discussed other 
things in terms of community-based services before. So I have 
to discuss that with him and see what's happening in Oregon.
    Has anybody else got anything they want to bring up before 
I dismiss the panel? Mr. Buckland, anything else?
    Mr. Buckland. Well, Mr. Chairman, I too would just like to 
be one of the people in line to thank you for your leadership 
on holding the hearing, all the stuff that you've done for 
people with disabilities in the country. It's much appreciated 
by all.
    The Chairman. You're kind to say that. I have good people I 
work with.
    Ms. Thaler.
    Ms. Thaler. I express my appreciation on behalf of all of 
my members as well.
    The Chairman. Well, thank you very much, Ms. Thaler.
    Mr. Knight.
    Mr. Knight. No response.
    The Chairman. Just keep on doing good stuff. I hope you get 
your legs back.
    Mr. Knight. Sorry I'm a little nervous, but it's the first 
time.
    The Chairman. Oh, don't worry about that, not around us 
anyway.
    Mr. Knight. I'll be better next time.
    The Chairman. I hope you get use of your legs back soon so 
you can get back to work.
    Mr. Knight. Oh, yes. I'm working on walking now. I used to 
be in a wheelchair.
    The Chairman. Good. Good for you. Keep up your good work.
    Mr. Bernstein, any last thing?
    Mr. Bernstein. Senator, thank you so much for this hearing. 
But even more so, thank you for all that you do.
    The Chairman. Well, you're nice--you're all nice to say 
that. I didn't mean to elicit it. I just thought maybe you 
might have something you wanted to say, some additional input 
here.
    But again, this is an ongoing thing. We've just got to 
recognize that there's no substitute for independence and for 
people having their own choice. Every time I bring it up--I 
say, ``Look, if Medicaid money is going out there and a person 
can get that Medicaid support if they go in the nursing home, 
shouldn't they be able to get at least that same amount of 
money if they decide to go someplace else to live?''
    Everybody says, yes, that makes sense. I say: ``Well, guess 
what; it isn't happening,'' and it hasn't happened. But we're 
trying to get the Community First Choice Option to at least 
move it ahead a little bit. But as long as I'm here, I'm going 
to continue to try to get a mandate that Medicaid money has to 
go to the person; the person himself or herself decides what 
they want to do with it, where they want to live, and not have 
to be told that they will get it if they go to a nursing home, 
if you've got a waiver, if you get on the waiting list; if all 
the stars, as you say, are in alignment, maybe then you can get 
that money if you live in the community.
    We've got to do away with that. We've got to break that 
whole system down. I think the most frustrating thing in my job 
here has been how long it's taken to do that. But we can't give 
up on it. I know none of you have given up on it and we're not 
going to give up on that battle either.
    Thank you all very much for being here.
    The record will stay open for 10 days for Senators to enter 
any questions to you that they might have.
    [Additional material follows.]

                          ADDITIONAL MATERIAL

          Response to Questions of Senator Enzi by Cindy Mann
    Question 1. Per our discussion at the hearing could you name a few 
States that Congress should be looking at as shining examples of 
Olmstead implementation? What makes those States successful?
    Answer 1. Certain States have created robust home and community-
based service (HCBS) delivery systems, and have done a good job at 
enabling individuals to receive services in the most integrated 
settings appropriate to their needs. That said, even within States 
where great strides have been made for some populations, there may be 
opportunities for improvement in other areas. Some of the hallmarks of 
strong service delivery systems that seem to best position a State to 
meet their obligations under the Americans with Disabilities Act (ADA) 
and the Olmstead decision include: the availability of individual 
budget allocations that enable individuals to freely choose where to 
receive services; single points of entry to the services of their 
choice; strong functional, objective assessment tools; person-centered 
planning processes; and robust service options in the community with 
significant opportunities for individual control and direction.

    Question 2. For States that are struggling with implementing the 
decision why are they struggling? What enforcement action steps can and 
has your Center taken to help enforce the decision?
    Answer 2. Over the last two decades, CMS has worked diligently with 
our other Federal partners who have responsibility for Olmstead 
enforcement to identify opportunities for the Medicaid program to 
further support State efforts in implementing the Olmstead decision. As 
noted in our testimony, much progress has been made to date thanks to 
the leadership provided by this committee and through numerous 
legislative initiatives. Specific examples include:

     Hundreds of millions of dollars have been provided under 
the Real Choice Systems Change (RCSC) grants and Ticket to Work and 
Work Incentives Improvement Act (TWWIIA) to provide States greater 
capacity to build community-based infrastructure, expand access to 
community-based services, and foster community integration for 
individuals with disabilities.
     Dating back to 1999, CMS has issued a series of State 
Medicaid Director (SMD) letters designed to illuminate Medicaid 
policies and programs that may contribute to equalizing access to all 
community and institutional long-term care services. Our most recent 
SMD letter of May 20, 2010 provided States with information on new 
tools for community integration available under the Affordable Care 
Act, reminded States and other key stakeholders of the array of tools 
already available to serve individuals in the most integrated setting 
appropriate, and explained opportunities for Federal assistance in 
overcoming key barriers.
     We have also continued to provide technical assistance to 
all States as they seek to overcome individual challenges to 
implementing HCBS options. In addition to the lack of available State 
resources, challenges often include overcoming barriers related to 
affordable housing for individuals who may no longer have community 
ties. States may also experience barriers related to their workforce 
and provider capacity. As more individuals receive care in HCBS 
settings, it is imperative that qualified staff and providers are 
available to provide needed care.
     Additionally, CMS has dedicated significant resources to 
improving the oversight and monitoring of HCBS waivers nationally. CMS 
has heightened its expectations of States around quality programs and 
ensuring the health and welfare of the individuals served. 
Specifically, CMS requires States to have an operational Quality 
Improvement Strategy (QIS), and requires detailed information on the 
methods used by the State to discover, remediate and provide systems 
improvements to their programs. Through our application and review 
process, we expect States to identify performance measures to 
demonstrate their compliance with all statutorily mandated assurances, 
and to provide data to demonstrate States' efficacy in identifying and 
fixing problems. We are continually working to ensure that States have 
the tools and resources to carry their QIS out effectively. We provide 
robust technical assistance at no cost to States and assist in the 
design and implementation of their programs. While we work to achieve a 
collaborative Federal/State relationship, in the event problems within 
a particular State are identified, CMS requires the State to make 
changes in its programs to improve quality.

    While these efforts have begun to tip the long-term care balance 
towards community-based services, several statutory and structural 
barriers impede further progress. For example, while coverage for 
institutional services is mandatory under Medicaid, coverage for HCBS 
under the section 1915(c) and section 1915(i) programs, as well as key 
Medicaid State plan services, is optional. As such, in times of 
economic downturn and limited budgets, States may make difficult 
choices that limit access to these ``optional'' services. The 
Affordable Care Act provides new HCBS options for States, which CMS 
hopes will improve access to HCBS across the country.

    Question 3. Can you provide data on the cost savings associated 
with providing community-based services versus institutional care?
    Answer 3. There is significant research regarding the efficacy and 
efficiency of HCBS, particularly in comparison to institutional care. 
However, given the structural differences in how States implement 
institutional and HCBS services and in how individuals gain access to 
these services, a traditional cost-effectiveness analysis has proven 
challenging to the research community. The nature of the services and 
their reimbursement structure is fundamentally different across 
different care settings and even among different populations. As a 
result, recent studies performed by economists Stephen Kaye and David 
Grabowski suggest that while making progress in refining cost-
effectiveness analysis, CMS must also explore subjective measurements 
for quality of life and place greater emphasis on consumer choice. In 
addition, it is difficult to precisely quantify the cost of expanding 
the entitlement to HCBS services because of the unknown numbers of 
individuals who may need and avail themselves of HCBS but who would not 
have availed themselves of institutional nursing facility services. A 
recent study by Charlene Harrington at the University of California, 
San Francisco indicates that States with well-developed HCBS programs 
had lower overall LTC spending, as they were able to reduce 
institutional utilization over time.
    Beyond the question of cost savings, the Administration is 
committed to providing each individual living with disabilities access 
to quality long-term services and supports in the most appropriate care 
setting of his or her choice.

    Question 4. What would CMS do for rural States, like Wyoming, where 
we have a housing crisis? While I believe in community-based services, 
housing is scarce across Wyoming. In mining communities we have 15-20 
miners renting two bedroom apartments and taking turns sleeping there 
on a rotating basis. What assistance does CMS provide for rural States 
to better implement Olmstead when they have capacity barriers?
    Answer 4. CMS, through the Medicaid program, can address housing 
capacity issues through two primary roles. First, CMS supports State 
efforts to educate and coordinate between the respective systems of a 
State's housing and human service agencies. Second, CMS supports 
resources that link human service and housing agencies with one another 
for purposes of planning and developing the necessary housing capacity, 
and/or connecting consumers with the housing and the services and 
supports they need to live meaningful lives in the community.
    In our experience, many human service agencies are not fully aware 
of the statutory and regulatory authorities, organizational structure, 
policies, and programs associated with housing resources and 
organizations. It is equally apparent that housing agencies are not 
familiar with these elements as they relate to Medicaid or other human 
service agencies. More opportunities exist for CMS to facilitate better 
collaboration between housing and human service agencies in order to 
generate sufficient housing capacity in the community for the elderly 
and people with disabilities and link these populations with the 
affordable and accessible housing that does exist.
    To that end, we are committed to addressing this issue in a 
proactive fashion. Shortly after arriving at the Department of Health 
and Human Services (HHS), Secretary Sebelius announced the Community 
Living Initiative. As part of this initiative, HHS is working through 
CMS to implement solutions that address barriers to community living 
for individuals with disabilities and older Americans. HHS is also 
partnering with the Department of Housing and Urban Development (HUD) 
to improve access and affordability of housing for people with 
disabilities and older Americans with long-term care needs.
    On April 7, 2010, HUD issued a $40 million HUD Notice of Funding 
Availability (NOFA) that will provide approximately 5,300 Housing 
Choice Vouchers over 12 months for non-elderly disabled families living 
in the community or transitioning out of institutional care. CMS will 
use the network of State Medicaid agencies, in concert with local human 
service organizations, to link eligible families to local housing 
agencies which will administer voucher distribution. Of the 5,300 
vouchers set aside as part of this program, up to 1,000 will be 
specifically targeted for non-elderly individuals with disabilities 
currently living in institutions but who could move into the community 
with assistance. Local housing agencies will place on their waiting 
lists any otherwise eligible individuals transitioning out of 
institutional care that demonstrate they will receive necessary 
services, including care/case management services. The remaining 4,300 
can be used for this purpose also, but are targeted for use by non-
elderly disabled families in the community to allow them to access 
affordable housing that adequately meets their needs.
    Subsequently, on June 22, 2010, CMS announced a technical 
assistance (TA) contract designed to implement the following concepts:

     Educate housing and human service agencies at the Federal, 
State, and local levels of government to help each type of agency 
navigate other organizations to obtain essential resources;
     Provide critical information about the housing and human 
service sectors that could include relevant Federal statutory and 
regulatory requirements, and organizational structures, culture, 
policies and programs;
     Assist State-level housing authorities, Medicaid agencies 
and population-specific authorities on how and with whom to link to 
obtain housing and services/supports for consumers; and,
     Assist regions and entities within States to plan, fund 
and develop housing options for vulnerable populations.

    [With that, the committee will stand adjourned.]

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