[House Hearing, 110 Congress]
[From the U.S. Government Publishing Office]
HELPING FAMILIES WITH NEEDED CARE:
MEDICAID'S CRITICAL ROLE FOR AMERICANS
WITH DISABILITIES
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED TENTH CONGRESS
SECOND SESSION
__________
JANUARY 16, 2008
__________
Serial No. 110-79
Printed for the use of the Committee on Energy and Commerce
energycommerce.house.gov
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COMMITTEE ON ENERGY AND COMMERCE
JOHN D. DINGELL, Michigan, Chairman
HENRY A. WAXMAN, California JOE BARTON, Texas
EDWARD J. MARKEY, Massachusetts Ranking Member
RICK BOUCHER, Virginia RALPH M. HALL, Texas
EDOLPHUS TOWNS, New York FRED UPTON, Michigan
FRANK PALLONE, Jr., New Jersey CLIFF STEARNS, Florida
BART GORDON, Tennessee NATHAN DEAL, Georgia
BOBBY L. RUSH, Illinois ED WHITFIELD, Kentucky
ANNA G. ESHOO, California BARBARA CUBIN, Wyoming
BART STUPAK, Michigan JOHN SHIMKUS, Illinois
ELIOT L. ENGEL, New York HEATHER WILSON, New Mexico
ALBERT R. WYNN, Maryland JOHN B. SHADEGG, Arizona
GENE GREEN, Texas CHARLES W. ``CHIP'' PICKERING,
DIANA DeGETTE, Colorado Mississippi
Vice Chairman VITO FOSSELLA, New York
LOIS CAPPS, California STEVE BUYER, Indiana
MIKE DOYLE, Pennsylvania GEORGE RADANOVICH, California
JANE HARMAN, California JOSEPH R. PITTS, Pennsylvania
TOM ALLEN, Maine MARY BONO, California
JAN SCHAKOWSKY, Illinois GREG WALDEN, Oregon
HILDA L. SOLIS, California LEE TERRY, Nebraska
CHARLES A. GONZALEZ, Texas MIKE FERGUSON, New Jersey
JAY INSLEE, Washington MIKE ROGERS, Michigan
TAMMY BALDWIN, Wisconsin SUE WILKINS MYRICK, North Carolina
MIKE ROSS, Arkansas JOHN SULLIVAN, Oklahoma
DARLENE HOOLEY, Oregon TIM MURPHY, Pennsylvania
ANTHONY D. WEINER, New York MICHAEL C. BURGESS, Texas
JIM MATHESON, Utah MARSHA BLACKBURN, Tennessee
G.K. BUTTERFIELD, North Carolina
CHARLIE MELANCON, Louisiana
JOHN BARROW, Georgia
BARON P. HILL, Indiana
-------
Professional Staff
Dennis B. Fitzgibbons, Chief of Staff
Gregg A. Rothschild, Chief Counsel
Sharon E. Davis, Chief Clerk
David Cavicke, Minority Staff Director
(ii)
Subcommittee on Health
FRANK PALLONE, Jr., New Jersey, Chairman
HENRY A. WAXMAN, California NATHAN DEAL, Georgia,
EDOLPHUS TOWNS, New York Ranking Member
BART GORDON, Tennessee RALPH M. HALL, Texas
ANNA G. ESHOO, California BARBARA CUBIN, Wyoming
GENE GREEN, Texas HEATHER WILSON, New Mexico
Vice Chairman JOHN B. SHADEGG, Arizona
DIANA DeGETTE, Colorado STEVE BUYER, Indiana
LOIS CAPPS, California JOSEPH R. PITTS, Pennsylvania
TOM ALLEN, Maine MIKE FERGUSON, New Jersey
TAMMY BALDWIN, Wisconsin MIKE ROGERS, Michigan
ELIOT L. ENGEL, New York SUE WILKINS MYRICK, North Carolina
JAN SCHAKOWSKY, Illinois JOHN SULLIVAN, Oklahoma
HILDA L. SOLIS, California TIM MURPHY, Pennsylvania
MIKE ROSS, Arkansas MICHAEL C. BURGESS, Texas
DARLENE HOOLEY, Oregon MARSHA BLACKBURN, Tennessee
ANTHONY D. WEINER, New York JOE BARTON, Texas (ex officio)
JIM MATHESON, Utah
JOHN D. DINGELL, Michigan (ex
officio)
C O N T E N T S
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Page
Hon. Frank Pallone Jr., a Representative in Congress from the
State of New Jersey, opening statement......................... 1
Hon. Nathan Deal, a Representative in Congress from the State of
Georgia, opening statement..................................... 3
Hon. Gene Green, a Representative in Congress from the State of
Texas, opening statement....................................... 4
Hon. Tim Murphy, a Representative in Congress from the State of
Pennsylvania, opening statement................................ 5
Hon. Lois Capps, a Representative in Congress from the State of
California, opening statement.................................. 6
Hon. Michael C. Burgess, a Representative in Congress from the
State of Texas, opening statement.............................. 8
Prepared statement........................................... 9
Hon. Tammy Baldwin, a Representative in Congress from the State
of Wisconsin, opening statement................................ 11
Hon. Jan Schakowsky, a Representative in Congress from the State
of Illinois, opening statement................................. 11
Hon. Darlene Hooley, a Representative in Congress from the State
of Oregon, opening statement................................... 13
Hon. Anna G. Eshoo, a Representative in Congress from the State
of California, opening statement............................... 14
Hon. Hilda L. Solis, a Representative in Congress from the State
of California, opening statement............................... 14
Hon. John D. Dingell, a Representative in Congress from the State
of Michigan, opening statement................................. 16
Hon. Edolphus Towns, a Representative in Congress from the State
of New York, prepared statement................................ 18
Hon. Danny K. Davis, a Representative in Congress from the State
of Illinois, prepared statement................................ 20
Witnesses
Diane Rowland, executive director, Kaiser Commission on Medicaid
and the Uninsured.............................................. 22
Prepared statement........................................... 25
Stephanie Thomas, national organizer, co-director, the Institute
for Disability Access, ADAPT................................... 43
Prepared statement........................................... 45
Ralph Gronefeld, president and chief executive officer, Rescare.. 83
Prepared statement........................................... 85
Celine Fortin, associate executive director, the Arc of New
Jersey......................................................... 89
Prepared statement........................................... 91
Aileen McCormick, president and chief executive officer,
Amerigroup Texas, Incorporated................................. 105
Prepared statement........................................... 107
Julie Beckett, director of national policy, Family Voices........ 125
Prepared statement........................................... 128
Submitted Material
AARP, submitted statement........................................ 148
Autism Speaks, submitted statement............................... 164
National Council on Independent Living, submitted statement...... 169
HELPING FAMILIES WITH NEEDED CARE: MEDICAID'S CRITICAL ROLE
FOR AMERICANS WITH DISABILITIES
----------
WEDNESDAY, JANUARY 16, 2008
House of Representatives,
Subcommittee on Health,
Committee on Energy and Commerce,
Washington, DC.
The subcommittee met, pursuant to call, at 10:05 a.m., in
room 2123 of the Rayburn House Office Building, Hon. Frank
Pallone, Jr. (chairman) presiding.
Members present: Representatives Towns, Eshoo, Green,
Capps, Baldwin, Schakowsky, Solis, Hooley, Dingell, Deal,
Wilson, Buyer, Pitts, Murphy and Burgess.
Staff present: Bridgett Taylor, Purvee Kempf, Amy Hall,
Yvette Fontenot, Hasan Sarsour, Melissa Sidman, Robert Clark,
Erin Bzymek, Lauren Bloomberg, Brin Frazier, Brandon Clark, and
Chad Grant.
OPENING STATEMENT OF HON. FRANK PALLONE, JR., A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF NEW JERSEY
Mr. Pallone. The subcommittee hearing is called to order.
Today we have a hearing on ``Helping Families with Needed
Care: Medicaid's Critical Role for Americans with
Disabilities.'' I will recognize myself initially for an
opening statement.
Let me begin by welcoming everyone back from our Christmas
and New Year's break. Today we are meeting--this is actually
our first hearing of the new year and I realize how important
this hearing is to so many people.
It goes without saying that today's hearing is long
overdue. I now there are many people who are in the audience
today who have been calling for this hearing for many months
and even years, and I want to thank you for all the hard work
you do to advocate on behalf of the disabilities community.
Today's hearing is about you and your families. It is about
ensuring you have the services and support you need to remain
independent members of society.
Over the years Medicare has enabled millions of Americans
with a wide range of disabilities to live independent lives by
providing medical care as well as specialized support and
services, but in spite of Medicaid's success, over the past
year the Bush administration has launched an all-out attack on
Medicaid, issuing a constant stream of regulations that seek to
reduce the scope and breadth of the Medicaid program, thereby
restricting its ability to provide for disabled Americans.
These harmful regulations would, for example, restrict
States' ability to provide rehabilitative services including
those designed to enable individuals with disabilities to
improve their mental or physical capacities and remain out of
an institution; also, eliminate the ability of schools to
provide administrative services such as enrollment, eligibility
counseling and referrals for Medicaid children, and most
recently, restrict States' ability to help manage the care and
support services that are crucial to helping Medicaid
beneficiaries live independently.
The combined effect of these regulations, should they be
implemented, would be a loss of billions of dollars for State
Medicaid programs, thereby putting in jeopardy critical
services that millions of Medicaid beneficiaries rely upon.
Now, fortunately, in the recently passed CHIP extension, we
were able to put a moratorium on the school-based
administrative and transportation services rule as well as the
rehabilitation services regulation but that was only a
temporary measure to halt the administration's attack. If these
rules and regulations are eventually implemented, they will
have a disastrous impact on our safety net system's ability to
provide services for disabled communities across the Nation. I
am looking forward to hearing from our witnesses today about
exactly what the impact of these regulations would be should
they go into effect.
Today is not only about the administration's misguided
policies. We also will be discussing a number of bills today
that can have a positive impact on disabled Americans by
strengthening Medicaid and offer alternatives to provide
services for disabled Americans so they can remain in their
communities. One proposal is legislation I introduced with
Chairman Dingell and Senator Kennedy, the Community Living
Assistance Services and Supports Act, or the CLASS Act.
Currently, there are 10 million Americans in need of long-
term services and support, and that number is expected to
increase to nearly 15 million by 2020. Most private-sector
disability or long-term care insurance plans are constrained in
the insurance protection that can offer at an affordable price
and neither Supplemental Security Insurance nor Old Age,
Survivor and Disability Insurance programs have any benefit
differentials related to the extent and character of the
disability.
Because of this, Americans who have, or develop, severe
functional impairments can only access coverage for vital
services through Medicaid. These services, however, including
housing modifications, assistive technologies, transportation
and personal assistance services are critical to their
independence, and this fact creates perverse incentive, forcing
many to live in poverty and remain unemployed so that they can
qualify for Medicaid. With Medicaid paying 50 percent of the
cost, increased expenditures on long-term services are expected
to add $44 billion annually to the cost of Medicaid over the
next decade.
And as America continues to age, we are faced with an
impending crisis in long-term care. With the introduction of
the CLASS Act last year, I aimed to offer a new approach that
builds upon our existing safety net system and helps our
elderly and disabled finance the long-term care they need to
remain active and productive members of their communities. This
bill offers a new alternative path. It will create a national
insurance program to help adults who have or develop functional
impairments to remain independent and employed, and it also
gives individuals added choice and access to supports without
requiring them to become impoverished to qualify.
I think the CLASS Act is an important step in the evolution
of public policy because it is a framework based on the
principles of independence, choice and empowerment.
We also are going to hear about the Community Choice Act,
and I see a lot of the orange shirts that indicate--we know
there is a lot of support for that. That, as you know, was
introduced by Congressman Davis. It aims to redirect the focus
of Medicaid services from institutions to home and community
settings, giving eligible individuals equal access to
community-based services as to institutional supports and
enabling people to make their own choices about the care that
they receive.
And finally, I also wanted to recognize that Mrs. Capps has
an important bill that she has introduced, the Direct Support
Professional Fairness and Security Act, which will provide
enhanced Federal Medicaid funding to those States that agree to
match voluntary private direct support professional wages to
the level of pay for comparable State employees.
Now, as you know, this hearing is not specifically on any
of the bills, even those these three bills obviously will be
highlighted, and other ideas will certainly come up and we
certainly welcome them, and I again want to commend my
colleagues for the work on these issues and all the bills that
they have put forward and thank the witnesses.
I now recognize the ranking member, Mr. Deal.
OPENING STATEMENT OF HON. NATHAN DEAL, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF GEORGIA
Mr. Deal. Thank you, Chairman Pallone, for holding this
very important hearing today.
The Medicaid Program serves almost 10 million individuals
with disabilities so I am glad we are taking an opportunity to
evaluate possible reforms to improve the care of this
population. Additionally in 2005, Medicaid spent $120 billion
on individuals with disabilities, so we must be mindful of the
most effective way to administer our resources.
For this reason, I have long been a proponent of community-
based services in Medicaid. As part of the Deficit Reduction
Act, I supported provisions such as cash and counseling, Money
Follows the Person, and home and community-based care service.
These programs provide States additional options for providing
Medicaid-covered services to beneficiaries. Many believe
community-based care is a cost-effective method, which I agree
with, which not only can save money but also provides better
quality care. As someone who with my wife, we took in our
elderly parents, my mother lost a leg and was in a wheelchair
and we cared for them for 8-1/2 years in our own home so I am
very well aware of the importance of being able to be care
provided in an environment that is considered to be your home.
For instance, some States have achieved significant savings
by transitioning beneficiaries out of nursing home facilities
into community programs like Money Follows the Person and we
have a very successful program in my hometown called Randy's
House, named after the son of a close personal friend of mine
who was injured when he was a very small child and has been
confined and is able to now live in an independent living
environment with assistance, and this is the kind of program
that I think we all need to encourage.
I have also signed on as a cosponsor of H.R. 1621, the
Community Choice Act, which, as you know, seeks to provide
individuals with disabilities increased access to community-
based attendant services through the Medicaid program. I look
forward to the testimony by our witnesses about some of the
benefits of this legislation.
We need to continue to pursue reforms which reverse
Medicaid's institutional bias that has denied Americans with
disabilities access to care in their homes. I look forward to
the testimony of the witnesses today about ways to address this
problem and the evaluation of some of the programs that we have
already created.
I thank all of you for your attendance and look forward to
the testimony of the witnesses, and with that, Mr. Chairman, I
yield back.
Mr. Pallone. Thank you, Mr. Deal.
Next we have our vice chair, the gentleman from Texas, Mr.
Green.
OPENING STATEMENT OF HON. GENE GREEN, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF TEXAS
Mr. Green. Thank you, Mr. Chairman, for holding the hearing
today on the role of Medicaid and Americans. This is a topic
many members of our audience have been fighting for many years,
and I am happy we are taking this important first step to
addressing the challenges that individuals with disabilities
face when accessing care.
Medicaid is the primary way we finance and deliver
community-based health and long-term services to needy children
and adults with disabilities. Medicaid offers many services
that are not covered under traditional employer-based or
private insurance. For those individuals with disabilities,
Medicaid is the only way they can access the service they need.
In some cases, the States have the ability to deliver
community-based services to children and individuals with
disabilities. We hear today that many people prefer community-
based services because it offers them the opportunity to remain
independent in their own homes. This is an important fact that
many of us who are not disabled take for granted. For those
individuals, having even a small amount of freedom is
priceless.
The issue we face with the current Medicaid system
regarding individuals who are disabled is that they are forced
to enter institutionalized care for a period of time before
they can access community-based services or they are placed on
waiting lists by States, sometimes as many as 10 years. When
faced with this daunting choice, many people simply enter
institutionalization which they do not want. As a cosponsor of
the Community Choice Act, I am glad we are discussing this
issue today. For those of us with private employer-based
insurance, we have the ability to choose what type of care we
want to receive, whether it is community-based or
institutionalized. These folks spend years waiting for the type
of care they would like to receive and most never receive or
experience home-based and community care unless they forego
treatment, find help to transition to home and community care.
On a corollary, I have introduced a bill that is on a
related topic. People with disabilities are forced to wait 2
years after they receive a Social Security Disability award
before they can receive Medicare benefits. Currently, Medicare
disability waiting period is the second one people have to wait
for. First, you have to wait months and sometimes years for
Social Security to make a determination that you are eligible
for disability. Then after that award you have to wait an
additional 24 months. Now, Medicaid is typically the health
care provider during that 24 months but I know we have had this
bill and Senator Bingham in the Senate had this bill to lower
that waiting period so it could be Medicare and Medicaid that
would help people with disabilities. As a result of the 24-
month waiting period, an estimated 400,000 Americans with
disabilities are uninsured unless they qualify for Medicaid.
Many more are underinsured during a time when quality health
care is most critical.
It is hard to understand why we force these individuals who
are most in need of treatment to wait for years before they can
receive much needed care under Social Security, Medicare or
Medicaid. Seniors, children and people with disabilities are
the most vulnerable members of our society and we must work
together to find a solution, offering those who are disabled
the services they need and at the same time not restricting
them to the type of care they do not want or take away their
ability to remain productive members of our society, and again,
Mr. Chairman, I am glad you called this hearing.
I yield back my time.
Mr. Pallone. Thank you.
I recognize the gentlelady from New Mexico, Mrs. Wilson.
Mrs. Wilson. Thank you, Mr. Chairman. I will pass and
reserve my time.
Mr. Pallone. The gentleman from Indiana, Mr. Buyer.
Mr. Buyer. I pass.
Mr. Pallone. OK. The gentleman from New York.
Mr. Towns. I will waive.
[The information appears at the conclusion of the hearing:]
Mr. Pallone. The gentleman from Pennsylvania, Mr. Murphy.
OPENING STATEMENT OF HON. TIM MURPHY, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF PENNSYLVANIA
Mr. Murphy. Thank you, Mr. Chairman, for holding this
important hearing for a group of Americans who too often are
forgotten. We are here today to discuss the important role that
Medicare plays in providing care for people with disabilities.
It gives vital support for the 10 million individuals it
services. This includes the elderly who have physical
disabilities and those that suffer with mental illnesses and
intellectual impairments.
In my 25-plus years of practicing as a psychologist working
with many children and families, I know firsthand the
importance that Medicaid provides to those who struggle with
mental retardation, autism, serious mental illness, physical
disabilities. Over those years I have treated many starting in
their infancy when their disabilities first began to take note.
I worked with them as they faced a system that has been best
characterized by barriers, bureaucracy and battles when it
should have emphasized independence, not more dependence. It
should have provided more support and services for self-
sufficiency and not more walls that keep people from being able
to hold jobs or work in their communities.
Community-based services increase people's quality of
living but we know it is also more cost-effective and I hope to
learn more about that today. With the thousands of patients and
families that I have treated, I have learned that nobody gets
better by being denied services and no disability is ever
treated effectively by being put on a long waiting list. We
have to have home-based care that is effective, saves money.
Between 1999 and 2002, the average nursing home payment rose 13
percent, but in contrast, the average cost per home-based
patient rose just 2.2 percent. That is not effective. Medicaid
reimburses nursing homes between $35,000 and $75,000 per
patient per year and we hear from nursing homes that that is
often not enough to cover their care, but even so, compare that
to only $25,000 for the average home-based care patient per
year. That is not effective. Texas estimated it saved between
20 to 35 percent in State Medicaid spending, thanks to
beneficiaries transferring out of nursing homes and into home
care. I am pleased that Medicaid has shifted resources toward
helping community and home-based care. The percentage of
Medicaid funds available to these programs has doubled from 15
percent in 1992 to 36 percent in 2004 and is probably able to
provide more access to community services.
With that said, I am also pleased that Three Rivers Center
for Independent living back in the Pittsburgh area provides
such excellent services but--my guess is that a couple are
here--but there is more we need to be doing effectively. All of
our hearts go out in compassion to helping those who struggle
with the barriers of their disabilities but we must do more
than offer our hearts. We must also work with them because many
of them are able to provide great ideas of how we can be more
effective as government working with people to do what Abraham
Lincoln once reminded us that government should do that which
people cannot do for themselves, not to increase dependency but
to work effectively with them so that they can become more
independent, more effective members of our community, and I
yield back.
Mr. Pallone. Thank you. The next is the gentlewoman from
California, Mrs. Capps.
OPENING STATEMENT OF HON. LOIS CAPPS, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CALIFORNIA
Mrs. Capps. Chairman Pallone, thank you for holding this
very important hearing. The title of the hearing says it all.
Medicaid provides a fundamentally critical role in the lives of
people with disabilities and their families, and I am pleased
to see, building on the statements of the ranking member, that
this is such a strongly bipartisan hearing and that there are
many issues that we agree upon.
There are two specifically important issues that I want to
address and hope that our witnesses will address as well. The
first is the impact of the harmful Bush administration
regulations that affect our ability to properly serve the
Medicaid population. Particularly I am worried about the impact
of the regulation regarding school-based health services. This
is going to have a terribly negative effect on the students
that I used to work with. Mr. Deal made a comment about his
personal experience with this legislation. I want to mention my
years of working as a school nurse and the many, many school
districts across this country who have students in them
attending classes according to the guidelines of IDEA and the
Americans with Disabilities Act in the least restrictive
environment. They can only do so because of critical services
provided to them by the school district through special
attendance. Without reimbursement for transportation and
administrative costs, school districts will have to scramble
for ways to provide special-needs children with necessary
services. As the Children's Health Initiative of Santa Barbara
puts it, schools are for many students and families the only
gateway to health services. Furthermore, schools are an
integral part of conducting outreach in order to enroll
eligible students for Medicaid services. It is hard to see this
directive as anything other than an attempt to shut these
children out. We simply cannot allow these regulations to be
put into place and take us so many years backwards in the
Americans with Disabilities Act. I commend our chairman, Mr.
Dingell, for introducing legislation to protect children's
health in schools, and I am cosponsoring that bill.
The other topic I want to address in my opening statement
regards the importance of community-based care for Medicaid
beneficiaries with disabilities and the role played by direct
support professionals who provide that care. There is a crisis
in workforce recruitment and retention at the same time we are
seeing such an important shift to promoting community-based
care. We need to be going in that direction. We need to work
harder to recruit and retain professional staff. Medicaid plays
a critical role in providing home and community support, yet
without an available care-giving workforce many beneficiaries
will suffer and are already suffering. Caregivers are so vital
to ensuring individuals can live independently, maintain jobs
and participate in community activities.
Unfortunately, one of the biggest barriers to recruitment
and retention is extremely low wages and compensation provided
to people who perform these difficult jobs, and I have been
working with my colleague Congressman Terry and several
national organizations to improve this through legislation.
Last year we introduced H.R. 1279, the Direct Support
Professional Fairness and Security Act. The bill would provide
funds to States to enable them to increase the wages of direct
support professionals who care for disabled Medicaid
beneficiaries. Maintaining a viable care-giving workforce is
essential to our growing population of individuals living with
disabilities. I look forward to hearing from our witnesses
today about these dedicated professionals and the impact of
salaries on efforts at recruitment and retention.
I yield back.
Mr. Pallone. The gentleman from Texas, Dr. Burgess.
OPENING STATEMENT OF HON. MICHAEL C. BURGESS, A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF TEXAS
Mr. Burgess. Thank you, Mr. Chairman, and in the interests
of time, I too will submit my statement for the record because
we do have an impressive panel of witnesses to hear from.
I would just make a couple of observations. In the late
1990's I purchased a long-term-care policy on the advice of my
mother, who said if I didn't buy it when I was young I would
not be able to afford it when I was old. But one of the main
selling points was within the State of Texas at that time were
I to rely upon what was available from the State, the only
option I would have would be to be placed in an institution
should I require care for a prolonged disability whereas if I
had private insurance, I would have the option of community-
based care or home care, and I thought that seemed like a more
reasonable alternative, so I was grateful to sign up for that.
I was also grateful under the direction of Chairman Deal
when we worked on the Deficit Reduction Act that we were able
then to extend the partnership concept to many more States
across the country and I am looking forward to the partnership
concept being enacted in the State of Texas and I think that
will go a long way towards helping people who have made the
decision to purchase their own individual disability policy to
be able to offset the cost of that care or protect assets up to
the limit of their disability policy, and I think that is a
powerful too we put in the hands of States to be able to help
them cope with the growing amount of dollars that they are
going to have to be devoting in their Medicaid programs to the
care of individuals who are disabled. We also must understand
that even though the hearing is focused on community-based
care, it does not absolve of us any responsibility for
oversight for those individuals who do not have the option but
must rely on institutional-based care and that is an important
part of our congressional oversight.
On our panel today, I am pleased to note we have two
individuals from Texas, so I know it is going to be a good
panel that we are going to hear from today. We have Stephanie
Thomas, who is from Austin, Texas, and Austin is of course our
State capital and we all love Austin, and we have Aileen
McCormick, who is president of AmeriGroup, which is located in
Houston, Texas, and we all know, even though I am from the
northern part of the State, that we could not function well in
Texas without our good friends to the south in Houston and
Austin, so I welcome both of those witnesses and look forward
to their testimony, and I will yield back, Mr. Chairman.
[The prepared statment of Mr. Burgess follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Pallone. Thank you.
I recognize the gentlewoman from Wisconsin, Ms. Baldwin.
OPENING STATEMENT OF HON. TAMMY BALDWIN, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF WISCONSIN
Ms. Baldwin. Thank you, Mr. Chairman, and I very much
appreciate the fact that you are holding this hearing today.
Clearly we need to do a lot more to rebalance our system
and the institutional bias in Medicaid, and I am an
enthusiastic and strong supporter of the Community Choice Act.
This bill would make community-based attendance care services
an alterative for Medicaid beneficiaries who are
institutionally eligible, or to put it more succinctly, the
bill would allow Americans with significant disabilities the
choice of living in their community among family, friends and
other support givers rather than having to live in a nursing
home or other institution. Now, I am proud to share that my
home State, Wisconsin, has provide to those on Medicaid the
option of community-based care for over 25 years. In 1981, we
enacted a program called COP, the Community Options Program, in
an effort to provide individuals with the option to live in the
community. This program became an official Medicaid waiver
program in 1987 and has been extremely popular. Unfortunately,
though, there is a significant waiting list to get into the
program, and when push comes to shove during State budget
discussions, State legislators facing limited resources
frequently turn to discretionary programs such as community-
based care as places to trim State budgets. Because
institutional care in Medicaid is a mandatory program and
community-based care is not, they focus on the community-based
care. And these cuts coupled with very long waiting lists mean
that even though we have this great program, there is still way
too many people who are denied the choice of where to receive
their care. The Community Choice Act would provide States with
the financial assistance needed to once and for all end the
institution bias in Medicaid and establish systems that provide
services and support in the most appropriate and integrated
setting.
I want to thank you, Mr. Chairman, again for holding this
hearing and allowing us the opportunity to delve much further
into these important issues, and I also really want to thank
and appreciate the many disability rights advocates who have
been such great champions on this issue. Certainly there are
many right here in this room this morning but I also know that
many across the country are watching and participating in this
hearing via the Internet, and your commitment to this issue is
very inspiring to all of us and we are very glad to have you
join us, whether in person or via the Internet.
Thank you, Mr. Chairman, again.
Mr. Pallone. Thank you.
I next recognize the gentlewoman from Illinois, Ms.
Schakowsky.
OPENING STATEMENT OF HON. JAN SCHAKOWSKY, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF ILLINOIS
Ms. Schakowsky. Thank you, Mr. Chairman. I am so glad that
we are starting off the second session of the 110th Congress in
this committee with such an important topic, the provision of
long-term care for low-income individuals and individuals with
disabilities.
We have a lot to discuss today and some wonderful witnesses
to hear from but I do want to take a moment to just recognize
and thank all the advocates who have joined us here and around
the country. You have worked long and hard for this day and it
is because of you that we are here. I thank you for being here
or listening in and thank you for your tireless work.
While we are having this hearing in a health subcommittee,
actually it also would be appropriate if this were a human
rights or a civil rights hearing as well because these issues
extend into the whole area of quality of life. I have in my
office over my shoulder a drawing of Justin Dart, really the
father of the independent living movement, and I want to
recognize his wife who is here today and has carried on that
legacy as all of you are representing today.
As the primary source of public financing for long-term-
care services and support for low-income individuals and
individuals with disabilities, Medicaid provides long-term care
services and support for over 8 million non-elderly people with
disabilities and 5 million seniors, many of whom have
disabilities. With the increasing demands of an aging
population, a generation which is expected to live longer than
ever before, the ability of Medicaid to provide quality,
appropriate long-term care services is essential. And while the
majority of Medicaid dollars used to serve this population
still goes to institutionalized care, there has been both a
shift in spending and an interest in directing more of those
dollars toward home- and community-based service. This is an
important trend and one that as a committee we must listen to.
Individuals with disabilities want to and deserve control over
where and how they receive care and support services. But the
question shouldn't be just one of institutional care versus
community care but rather of providing the resources and
choices that people need throughout the entire continuum of
care so that people get the care that they need and that they
desire. Unfortunately, what we are seeing is an administration
that prefers to reduce the pot for all rather than expand it.
The Olmstead decision reflected the need to provide a full
range of choices across the continuum, and I am glad that we
will be discussing the Community Choice Act, which I know is of
great importance to many of my constituents.
I would like to request, Mr. Chairman, for unanimous
consent to include Congressman Danny Davis's statement for the
record. He is a sponsor of this bill which would provide
alternatives to institutions and support the momentum for
individual choice.
Mr. Pallone. So ordered.
Ms. Schakowsky. Unfortunately, rather than moving in that
direction, this administration is trying to limit those choices
through misguided regulations. Though a number of States that
use the Medicaid rehabilitation services option to serve people
with mental illness has increased significantly in recent
years, the administration has issued a regulation that would
place serious limitations on the kinds of services allowed
under this program effectively restricting the rehabilitation
services available to people with mental illness. The
administration has also issued a regulation to reduce the
capacity of case management services for children in foster
care and people with disabilities, services which help
beneficiaries access needed medical, social, educational and
other services that help them re-enter or remain a part of
their community. And finally, I want to also mention the
administration's efforts to terminate schools' ability to serve
children with special needs by eliminating reimbursement for
transportation services. These regulations are offensive and
misguided, and I look forward to addressing them as soon as
possible.
Again, I want to say how grateful I am for the advocates. I
also welcome all of our witnesses and look forward to hearing
from them. This is an extremely important discussion that we
will have today, and with that, I yield back, Mr. Chairman, and
thank you very much.
Mr. Pallone. Thank you.
The gentlewoman from Oregon, Ms. Hooley.
OPENING STATEMENT OF HON. DARLENE HOOLEY, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF OREGON
Ms. Hooley. Thank you, Mr. Chairman. I am very pleased the
subcommittee is holding this hearing today. The issues
affecting Americans with disabilities far too often remain out
of the spotlight. Thanks to you and Chairman Dingell, we now
have an opportunity to discuss these important issues.
Medicaid plays a vital role for the 8 million Americans
with disabilities enrolled in the program. Medicaid provides
not only traditional medical care through hospitals and
doctors' offices and nursing facilities but also equally
important services to help those with disabilities remain and
maintain their independence. Those latter services include
personal care and home- and community-based services that allow
many people with disabilities the opportunity to live in less
restrictive settings than would be possible without assistance.
Medicaid must provide services effectively to beneficiaries
with a wide range of disabilities including those with
developmental disabilities, physical disabilities and
intellectual disabilities. In order to ensure the needs of
beneficiaries are met, Medicaid must be flexible enough to
adapt to groups with needs as diverse as the disabilities that
enable them to qualify for the program.
The Centers for Medicare and Medicaid Services have
unfortunately taken steps recently to limit the flexibility in
my State, Oregon, but other States as well, to meet the needs
of people with disabilities. As a former teacher, I want to
express my concern with the CMS rule that will eliminate
reimbursement for school-based administration and
transportation services. These transportation services play an
important role in filling gaps in services to ensure children
with disabilities can receive the same caliber of education as
other students. School-based transportation services provided
by Medicaid are very important but are still covered in only
rather limited circumstances. But CMS has refused to continue
providing even the limited range of services currently covered.
No change to the underlying law has been made since 1988 when
the agency began covering these services. CMS has nonetheless
chosen to eliminate this important and narrowly tailored
benefit for children with disabilities.
I am also concerned with significant new limitations on
targeted case management, which are services designed to help
Medicaid beneficiaries transition from institutions into the
community. The CMS interim final rule on targeted case
management would limit beneficiaries to case management service
of only 14 days for those who have been in an institution for
up to 6 months. In those 14 days, a case manager may have to
find housing, job placement, personal care services and any
other service that may be necessary to successfully transition
a beneficiary into the community. Such tight time constraints
harm beneficiaries and make it more difficult for people with
disabilities to move into less restrictive settings.
I am anxious to hear from our witnesses about the impact
these CMS rules will have on people with disabilities and also
about how proposed legislation discussed today may improve
services for those with disabilities.
Thank you again, Mr. Chairman, for this important hearing
and for the discussion.
Mr. Pallone. Thank you.
I next recognize the gentlewoman from California, Ms.
Eshoo.
OPENING STATEMENT OF HON. ANNA G. ESHOO, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CALIFORNIA
Ms. Eshoo. Thank you, Mr. Chairman, for holding this
hearing. It is encouraging to me and to all of us that the very
first hearing that the Health Subcommittee would hold in 2008,
the second half of the 110th Congress, is on this issue.
We have many discussions on a whole variety of topics here,
all of them important, but I can't help but think today is
especially important. We have I think some of the strongest
advocates from across the country here, and it is great to
see--this is actually how things get done here is that people
come here and push very, very hard, so we have to continue to
see the orange tee shirts here. I can't help but think of what
my father said for the better part of my life, and that is that
there is only one class of citizenship in this country, first
class, and if we are going to live up to that, then we are
going to challenge the system in terms of what the recent rule
changes that were adopted and how we strengthen Medicaid.
Medicaid is batted around by a lot of people but no one in
this room is going to say that it isn't important. It is the
last lifeline. It really is what helps to keep people living a
life of dignity that have disabilities, and so I look forward
to working with all of my colleagues on this committee on both
sides of the aisle. If we can spend $10 billion a month on the
other side of the world, we can fix this.
Mr. Pallone. Thank you.
Next, the gentlewoman from California, Ms. Solis.
OPENING STATEMENT OF HON. HILDA L. SOLIS, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CALIFORNIA
Ms. Solis. Thank you and good morning, Mr. Chairman. I want
to thank the witnesses and especially the advocates for being
here. You know, without you, your voices wouldn't be heard so
you are to be commended for that. I know many of you have
traveled from many parts of the country and I want to thank
those especially representing the great State of California for
being here as well.
Many Medicaid seniors and children, as you know, face
additional burdens including mental illness, physical
disabilities and challenges with the foster care system.
Consequently, individuals in our communities who have
disabilities often need medical, social, education and other
vital services. Individuals with disabilities have different
physical and mental conditions and our Medicaid program should
respect those differences instead of mandating a one size fits
all.
I oppose the harmful and restrictive CMS rules regarding
Medicaid reimbursement. Instead of taking away funding, we
should be investing in care for the uninsured, low-income
children who are already eligible for Medicaid or the SCHIP
program. In addition, reimbursement for transportation is
needed to help students with special needs. I have seen
firsthand the importance of Medi-Cal, Medicaid in California,
and these new rules which would have a devastating effect on
children in my district. The CMS final rule would result in a
loss of $9 million to the Los Angeles Unified School District,
the second largest district in the country. LA Unified would
lose $7 million in funding to Medi-Cal administrative
activities which include outreach, enrollment activities and
referral to Medicaid-eligible services. LAUSD expects to lose
about $2 million in funding for transportation services for
children who access Medicaid services right now at our schools.
This cut would reduce the availability of vital Medicaid
services to the most vulnerable populations, and I have heard
firsthand from our school that they will continue nevertheless
to transport our students who need this care without Federal
reimbursement but of course that means that money is going to
have to come from somewhere else, and that is really
unfortunate. At this time when States like California are
facing dire economic conditions, our Federal Government has a
responsibility to help our children.
I am deeply concerned about the impact of CMS's regulations
for individuals who need case management to successfully
transition from an institution to the community. A transition
into the community, as you know, is a very difficult and
complex process that involves multiple people and services. Our
providers can't wait for determinations for successful
transition and then to be reimbursed after. In addition, if we
truly want to support individuals to stay out of institutions,
States should have the ability to provide rehabilitative
services and not face additional obstacles imposed by CMS.
I look forward to working with my colleagues on both sides
of the aisle to remedy this situation, and I look forward to
hearing from our witnesses today, and again, congratulations to
the advocates. I yield back the balance of my time.
Mr. Pallone. Thank you.
I recognize the chairman of our full committee, Mr.
Dingell, but I would like to point out that it was Mr. Dingell
who has been pressing very hard that we have this hearing
today, and so we do have to thank him for that. I recognize the
chairman of the full committee.
OPENING STATEMENT OF HON. JOHN D. DINGELL, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF MICHIGAN
Mr. Dingell. Thank you, Mr. Chairman, for your kind words
and I commend you for this hearing, and I thank you for your
leadership in this matter.
I would like to begin by welcoming our visitors and guests
today. Thank you for being with us today. I would like to
observe that your presence is helpful and I want to observe
that the committee is going to do its best to move forward and
see to it that we address your concerns today. I am compelled,
regrettably, to advise you that there are rules of decorum with
regard to the behavior of witnesses and members of the
committee when they are present, and that does preclude, I
regret, applause or other signs of approval or disapproval. So
I hope that you will feel welcome and want you to know that you
in fact welcome. But I would ask that you observe the rules of
the committee and that we not have applause or other signs of
approval or disapproval because it is not in conformity with
the rules of the House or the rules of the committee or the
dignities that this particular institution should have.
Having said that, our hearing today is going to focus on
critical sources of concern and critical sources of healthcare
for Americans living with disabilities. I refer to the Medicaid
program. Millions of people with disabilities, seniors in
nursing homes, children born with birth defects, children who
are otherwise hurt, people struggling with mental illness or
intellectual disabilities, and adults who disabilities occur
later in life depend on Medicaid for needed services including
services nowhere else available, especially from existing
sources of insurance. Medicaid provides about 40 percent of the
long-term-care services delivered in this country and covers
nearly half of all nursing home expenditures in the United
States, making it the Nation's largest single payer of
healthcare, particularly in the long-term care.
One of the challenges that we face in the country is how to
improve access to the services in the community rather than to
require admission to nursing homes to receive them. Those who
receive community-based services have an improved quality of
life and are better able to live a decent life and to do so
near family and friends. States have taken steps to improve
availability of community services. The Money Follows the
Person demonstration which provides States one year of enhanced
funding for each person to transition back into the community
is indeed a good first step. This has been a very, very
interesting thing but it has been unfortunate that a person
must first live in an institution 6 months in order to be
eligible for this transition program. It appears to be very
counterproductive of the goals that everybody follows. The
availability of waivers and the new State option to provide
community- and home-based services without waiver provides
critical tools for transition to community care but again, the
income and resource thresholds often mean that people with
disabilities must choose between better paid employment and
health services that allow them to remain in the community and
yet tens of thousands of people are on waiting lists for waiver
places, nearly 260,000 in the year 2005, a clear indication of
the need and the workability of these programs and the need to
expand them.
Unfortunately, while States have been making progress at
transitioning individuals back into their communities, the
administration is trying to hold this kind of progress back
rather than to move it forward. It has proposed regulations
that seriously curtail or eliminate the ability of people
living in communities with disabilities to receive needed
services. For example, limiting transition and transportation
services for disabled children who receive health services in
schools and restricting rehabilitation services to those with
long-term disabilities because they may never fully recover is
shortsighted and a source of harm for those affected by such
regulations, and I want to repeat, the denying of long-term
services to people with disabilities because they may never
fully recover is, in my view, an outrageous thing which is
indefensible in any company.
I again thank the witnesses who are here today. Their
testimony is going to detail the challenging task of improving
community options for people with disabilities. Medicaid has
given us a fine foundation but more work is needed to update
its provisions. Again, I welcome our visitors and guests who
are present at this hearing or watching the broadcast of these
matters. I am pleased and I am sure all the members of the
committee are pleased that you are here and I commend you for
your efforts in this worthy endeavor.
Mr. Chairman, I thank you for your kind recognition of me.
Mr. Pallone. Thank you, Mr. Chairman, and that concludes
the opening statements by members of the subcommittee. Other
statements will be accepted at this point in the record.
[The prepared statements follow:]
Mr. Pallone.We will now turn to our witnesses, and we have
one panel and you are all seated, so I want to welcome you
first of all, and let me introduce each of the panel members
here.
First is Dr. Diane Rowland, who is executive director of
the Kaiser Commission on Medicaid and the Uninsured from here
in Washington, DC. And then to her right is Stephanie Thomas,
who is national organizer for ADAPT and co-director of the
Institute for Disability Access. And then we have next to her
Mr. Ralph Gronefeld, who is present and chief executive officer
of ResCare. He is from Kentucky. And then we have from my own
State, Celine Fortin, who is associate executive director of
the Arc of New Jersey from North Brunswick, New Jersey, and I
want to particularly thank her because she was part of a
roundtable that we had during the break in New Jersey earlier
this week where I was trying to get an idea of how some of
these Medicaid rules are directly impacting New Jersey. So
thank you for being here and coming a second time for me. And
then we have to her right is Aileen McCormick, who is president
and chief executive officer of AmeriGroup Texas Inc. She is
from Bellaire, Texas. And finally is Julie Beckett, who is
director of National Policy for Family Voices and she comes
from Cedar Rapids, Indiana--no, Iowa, Cedar Rapids, Iowa. I
should know that after the Iowa caucus.
Let me just mention, we have 5-minute opening statements
from the witnesses. Those statements will be made part of the
hearing record. Each witness may in the discretion of the
committee submit additional brief and pertinent statements in
writing for inclusion in the record, and I will start by
recognizing Dr. Rowland. Thank you.
STATEMENT OF DIANE ROWLAND, EXECUTIVE DIRECTOR, KAISER
COMMISSION ON MEDICAID AND THE UNINSURED
Ms. Rowland. Thank you, Mr. Chairman and members of the
committee. I am very pleased to join you today to discuss the
evolution and current role of Medicaid for people with
disabilities and the many challenges we have in meeting the
diverse and extensive service needs of this population.
As you well know, the Medicaid program is our Nation's
major public health coverage program, today covering some 58
million low-income Americans including 8 million persons with
disabilities and 6 million low-income, frail, elderly and
disabled Medicare beneficiaries who rely on Medicaid to fill
Medicare's gaps. Medicaid is indeed a vital safety net for
millions of Americans but a lifeline for many people with
disabilities.
Since its enactment in 1965, Medicaid has been a
predominant source of assistance to people with disabilities.
Over the years a national floor for eligibility and common
definition of disability was established with the
implementation of the Federal Supplemental Security Income cash
assistance program in 1972. Assistance in the community and at
home has become more available as an alternative to
institutional care over Medicaid's history. Improvements have
been made in the quality of care in nursing homes and
assistance was provided to enable people with disabilities to
return to work while retaining Medicaid coverage.
To be covered by Medicaid, individuals must meet, however,
both restrictive income and asset requirements and have a
condition determined to be permanent disabling. The average
income level for eligibility is $7,500 a year with an asset
level of $2,000, those embodied in the SSI cash assistance
program. As a result, Medicaid is unable to cover people at
higher income levels. The Medicaid disability population is
diverse with a wide range of conditions and limitations
including children with intellectual and developmental
disabilities such as mental retardation and autism, young
adults with spinal cord and traumatic brain injuries, HIV/AIDS
or serious mental illness and older people with Alzheimer's or
severely disabling chronic diseases such as diabetes and
pulmonary disease. The needs of people with disabilities are
extensive and complex, requiring many types of health services
and support that are not traditionally covered by other sources
of insurance but needed to maintain function and in some cases
independence. Of the $103 billion dollars in Medicaid spending
for people with disabilities in 2004, 38 percent was for long-
term-care services, 19 percent for prescription drug coverage
and 43 percent for medically related care, especially including
mental health services often uncovered in other programs.
Medicaid's strength has been its ability to provide a continuum
of care and a wide range of supportive services.
Although Medicaid is principally recognized as a source of
health insurance coverage for millions of low-income children
and parents, the program is indeed the largest source of health
insurance and long-term care for people with disabilities.
Seniors and people with disabilities comprise only a quarter of
enrollees in Medicaid but account for 70 percent of all program
spending. The average per-person cost for persons with
disability in 2004 was $12,364 compared to less than $1,500 for
non-disabled children and a per capita expense of less than
$2,000 for non-disabled adults. Moreover, the concentration of
spending is very linked to high-cost beneficiaries. High-cost
disabled beneficiaries incurring over $25,000 a year in
expenditures represented 2 percent of overall Medicaid
enrollees but accounted for one quarter of all program
spending.
Medicaid plays a critical role in providing health services
to people with disabilities by filling in the gaps in Medicare
and private insurance and going beyond the medical model to
offer a broad array of services needed by people with severe
disabling conditions. Doctor visits and prescription drugs
alone are insufficient to enable an individual with severe
paralysis to get a job. Personal assistance, medical assistance
devices, transportation and other assistive devices all covered
by Medicaid are essential adjuncts to medical care. Extended
eligibility for Medicaid coverage to individuals without
requiring impoverishment can help to stimulate broader access
to community-based care and enable people with disabilities to
work without fear of losing the Medicaid support they need to
function.
One of Medicaid's biggest challenges, however, in meeting
the needs of people with disabilities has been that there are
differences in functional and financial eligibility criteria
between nursing home and community-based care that has steered
people with disabilities into institutional settings. Consumer
demand and the Olmstead decision have helped to promote
expanded access to home- and community-based services. Through
home- and community-based waivers now, Medicaid is helping
nearly 3 million people to be able to receive care in the home
rather than in an institution setting but more options are
needed. Some 280,000 people were on waiting lists for home- and
community-based services in 2006. Institutionalization should
not be the admission ticket to home-based services under
Medicaid.
The Medicaid experience, however, clearly demonstrates the
importance of providing a broad range of health and long-term
care coverage for the population with disabilities and
documents the lack of alternative forms of assistance.
Reformers should build on the progress that has been made in
providing coverage and access to care for those with
disabilities and exercise extreme caution when making changes
that could affect the health and well-being of many of our
Nation's poorest and most disabled citizens.
Thank you very much.
[The prepared statement of Ms. Rowland follows:]
Mr. Pallone. Thank you, Dr. Rowland. And I didn't stop you,
but I should remind everybody 5 minutes if you can. And next is
Ms. Thomas.
STATEMENT OF STEPHANIE THOMAS, NATIONAL ORGANIZER, CO-DIRECTOR,
THE INSTITUTE FOR DISABILITY ACCESS, ADAPT
Ms. Thomas. Thank you for the opportunity to be here. I
appreciate also the opportunity to speak on behalf of ADAPT, a
national grassroots disability rights organization.
Many of ADAPT's members have done time in nursing homes and
other institutions, basically becoming a cash crop for an
industry that wants to draw down dollars. Living in an 8 foot
by 8 foot room with a stranger, being told when to get up, when
to go to bed, what and when to eat, basically your life is not
your own. I have been told many times I would rather die than
go back. I have never in my life heard someone say I am looking
forward to moving into a nursing home. Those who got out did
not get better from their disabilities; they got out, and that
is simply it, and they now live in the community with attendant
services. They had to fight their way to get out for the most
part to live in the community. We know of children born with
disabilities who have been forced away from their families and
into institutional placements. Children belong in families, not
in institutions. Being institutionalized by one's own choice is
one thing but being trapped there because you have no
alternatives is something very different. According to CMS's
own numbers, nationally over 300,000 people in nursing homes
alone have expressed a preference for home- and community-based
services yet they are stuck inside. They do not even count
those trapped in other institutions and those in the community
scraping by as they wait year after year to move up on a
waiting list.
I urge you to take action. Words are great and what you
said today was wonderful to hear but we need action. Pass H.R.
1621, the Community Choice Act. Squarely address the
institutional bias in long-term care. Medicaid has helped
millions of people with disabilities of all ages to achieve
independence, dignity and health but awareness and values of
our Nation are changing, and as medical breakthroughs promise
more independence, the glaring problem of the institutional
bias grows more pronounced. Even Money Follows the Person, a
wonderful and important new demonstration program funded in the
DRA, requires that people have to be in an institution to get
out and receive services. You should not have to go in to get
out nor should you be stuck inside because people want a better
solution.
Our current system is backwards. Services are fragmented
and based on disease categories and age instead of on
functional need. The institutional bias has led to a system
wherein institutional services are mandated and the community
is optional for 63 percent of the Medicaid long-term-care funds
go to institutions and just 37 percent are left for community
services, all the community services, despite the facts of long
waiting lists, sometimes as long as 10 years. Ironically, the
same community services cost only about two-thirds of their
institutional equivalent on average. We hear about the fear of
the woodwork effect. This is an insulting term that actually
refers to the unmet need of real live human beings. We are not
cockroaches and this is not pest control. Forcing people to
live and get by on nothing is neither good policy nor does it
solve the money issue in the long run. Many States would like
to even the playing field but the Federal entitlement to
nursing homes alone stops them.
The Community Choice Act would help to improve the services
in nursing homes and other institutions as it would give them
real competition. Over 700 organizations from across this
Nation have signed on supporting the Community Choice Act, over
700. The bill is based on a simple concept. It allows
individuals eligible for services in a nursing facility, ICFMR
or IMD the opportunity to choose instead a new alternative,
community-based attendant services and supports. CCA makes an
existing mandated service more flexible to meet the needs of
those who are currently eligible for its services. You could
even use these services in schools. It doesn't force anyone to
move out nor does it close any facilities, as some have
claimed. It simply gives people a choice. In addition, the
Community Choice Act assists States to reform their long-term
services and supports. Women take heed: the vast majority of
people in nursing homes, over 70 percent, are women. The vast
majority of the underpaid direct care workers are women, over
70 percent, and the vast majority of those who provide free
care are women. Is this issue swept under the rug completely
because of this? I don't know, but I do know that most of you,
men and women alike, will have to face this issue in the near
future. I faced it when my father-in-law came to live with my
husband and me, a diabetic who had a stroke, he stubbed his
toe, and in the end he had to have both of his legs amputated.
His eyesight was going and so was his memory of things like
whether the stove was left on. Professionals urged us to put
him in a nursing home but he lived with us with attendant
services, but today he would be at the bottom of an over
40,000-person waiting list. He wouldn't have reached the top
before he passed away.
As America grays, this issue grows larger and larger. It is
not a question of if we will be dealing with long-term care; it
is a question of how we will be dealing with it. Like most
monsters under the bed, once we confront it we will find that
it is not what we feared.
One more thing. Even as CMS encourages the States to assist
people who want out of nursing homes or other institutions to
move out, a great thing, it has bizarrely decided to cut case
management services by almost 70 percent. This assistance is
vital. This devastating cut shows the lack of understanding in
the reality of people's lives and it distorts priorities. You
need to reverse this terrible decision on case management and
reverse the overall institutional bias in Medicaid. Passing the
Community Choice Act is an important piece in this overall
effort, so please pass it.
Thank you for the opportunity to speak today.
[The prepared statement of Ms. Thomas follows:]
Mr. Pallone. Thank you, Ms. Thomas. I am going to ask again
that, everyone is running over, try to limit it to 5 minutes.
Next is Mr. Gronefeld.
STATEMENT OF RALPH GRONEFELD, PRESIDENT AND CHIEF EXECUTIVE
OFFICER, RESCARE
Mr. Gronefeld. Good morning, Chairman and members of the
subcommittee. Thank you for inviting me to be here today.
It has been our privilege to provide services to people
with intellectual and developmental disabilities in nearly
every setting for more than 30 years. During that time we have
been a Medicaid paid provider and have successfully forged
public-private partnerships in 37 States. We also operate job
centers, workforce and one-stop services and provide home care
to senior citizens. We are a human services company whose
mission is to maximize independence for all populations who
rely on us. We serve more than 65,000 people every day with
more than 42,000 dedicated employees.
The efforts by Congress, the administration and the States
to rebalance the long-term-care system to more home and
community services have led to more flexibility, individual
control, desirable options and cost-effective services. As you
know, Medicaid is the only funding source for services to most
individuals with disabilities. The Medicaid budgets are
strapped. The demand for services is exploding while at the
same time the available workforce is shrinking.
For years individual States have essentially been running
pilot programs testing different waiver options. Currently
there are hundreds of waivers spread through 50 States and yet
in some States there remains significant deterrence to home and
community services. States continue to fund institutional
services at higher rates, offering cost reimbursement, room and
board subsidies and other incentives that are not given to
waiver services. At the same time, many of the waivers have
become overly complex, inflexible and very expensive. As the
cost of care rises, States have responded by limiting services,
restricting eligibility and reducing payments. Under these
pressures, the waiting lists have grown along with Medicaid
budgets and services to those with disabilities who must look
at all models of care and find the few that provide the best
outcomes for the most people. We must move away from models
that are ineffective and costly.
Refining our service models is one solution but the
greatest challenge to all services is the Nation's workforce
crisis. We must have a competent and caring workforce. Any
discussion of changes or improvements to Medicaid policy should
focus on this fundamental issue. High turnover rates, low
wages, shortage of available workers and increased demand are
pervasive problems for families, individuals receiving services
and the people who provide those services. Barely 10 percent of
the 4.3 million people with intellectual and developmental
disabilities receive Medicaid services. That 10 percent demands
on more than 874,000 caregivers. By 2020, we will need nearly a
million and a half workers. That is a 37 percent increase in
need but there will be a corresponding decrease in the number
of people available to do the jobs. Soon we won't be able to
find the people willing to care for the individuals that we
serve.
One solution to the workforce crisis is the Direct Support
Professional Fairness and Security Act, H.R. 1279, which was
reintroduced in the 110th Congress by Representatives Lois
Capps and Lee Terry. This bill, which now has 107 cosponsors,
gives States a much-needed option to secure additional Federal
Medicaid dollars for the workforce. This bill is an investment
in a workforce that is needed to ensure the stability of home-
and community-based services.
Congress should also consider legislation to develop
incentives such as training programs and career advancement
opportunities which would enable more people to enter this
field. Such efforts should make better use of the public
workforce system by getting the Department of Labor to change
its guidelines for civil employment and recognize direct
support professional as an accepted job classification.
We also need to address our service models to more
effectively use our workforce. New models of care such as ones
that use technology to provide safe, secure services with fewer
caregivers can be the answer. An example is Rest Assured, which
is currently being piloted in Indiana which is a public-private
partnership between ResCare, the Wabash Center, a nonprofit
organization, and Purdue University. It is a web-based telecare
system that is proved to be very successful. Through this pilot
we have found that individuals who receive remote care-giving
services show greater satisfaction with the added independence
they experience. Savings can be realized that would enable us
to serve more people for the same amount of money.
There are many people and organizations involved in
providing services and supports to those with intellectual and
developmental disabilities. I ask that providers been included
in the search for solutions. The challenges I am suggesting
today can assure the safety, security and independence for
those we serve, simply the system, therefore it would be more
cost-effective, standardize best practices, therefore providing
better outcomes, and attract committed, dedicated caregivers.
Thank you for your time today. I will be happy to answer
questions to provide additional information.
[The prepared statement of Mr. Gronefeld follows:]
Mr. Pallone. Thank you, Mr. Gronefeld, and now Ms. Fortin.
STATEMENT OF CELINE FORTIN, ASSOCIATE EXECUTIVE DIRECTOR, THE
ARC OF NEW JERSEY
Ms. Fortin. Good morning. I am Celine Fortin, an associate
executive director of The Arc of New Jersey. We are New
Jersey's oldest and largest advocacy organization for children
and adults with intellectual and developmental disabilities and
their families. I want to thank Chairman Pallone and the
distinguished members of the subcommittee for recognizing the
concerns of this most vulnerable population.
You have received my written statement so I am only going
to highlight two issues now: recent rule proposals made by the
Centers for Medicare and Medicaid Services, CMS, that will have
a potentially catastrophic impact on individuals with
intellectual and developmental disabilities, and pending
Federal legislation that will positively impact this
population.
At the outset, it is important to underscore that despite
improvements that can be made, Medicaid works, and it is a
critical lifeline for our country's most vulnerable
populations. For many people with disabilities, Medicaid is the
only source of funding that helps ensure that they can live and
work in their own communities and avoid costly and segregated
alternatives. With that said, we have serious concerns with
CMS's recent proposed rule changes. First, CMS's interim final
rule on case management goes well beyond the policies
established by Congress in the Deficit Reduction Act of 2005.
The Arc of New Jersey has many concerns with regards to this
rule, which are included in my written testimony. For example,
current Medicaid policy provides Federal reimbursement for
States for transitional case management services for the last
180 days of an individual's stay in an institution. This
funding is critical to ensure that people move from
institutions into community settings successfully. The interim
final rule reduces reimbursement from 180 to 60 days, which is
not even close to sufficient for these difficult transitions.
Second, CMS's proposed rule on rehabilitative services is
also of great concern as it creates new obstacles for Medicaid
beneficiaries to receive medically necessary rehabilitative
services. The proposed rule would severely harm people with
intellectual and other developmental disabilities by
eliminating longstanding day rehabilitation programs for many
people with disabilities. It also imposes a discriminatory and
arbitrary exclusion from receiving many rehabilitative services
for many people with intellectual disabilities and related
conditions. These services enhance the independence of people
with disabilities and removing them is extremely problematic.
Third, CMS published a final rule to address school-based
services and transportation. While the final rule is attempting
to address legitimate policy issues, we believe that it
constitutes bad fiscal and social policy. The savings to the
Federal coffers will be miniscule compared to the enormous
impact on school systems which rely on appropriate Medicaid
reimbursement to serve children with disabilities. This rule
will likely result in greater need for Medicaid services and
expense in the future since services not delivered to children
can exacerbate their disability and result in more costly
treatment in adulthood. It is important to note, however, that
the Protecting Children's Health in Schools Act of 2007 would
provide a commonsense solution to this dilemma without unduly
harming school systems and students with disabilities.
In addition, we would like to thank you, Chairman Pallone,
for your leadership in securing a 6-month moratorium on
rehabilitative services and school-based services
transportation regulations. We strongly urge Congress to either
extend this moratorium and include the case management
regulation for at least 12 months or pass legislation to fix
the policy changes embodied in these Medicaid regulations.
I would now like to briefly address pending legislation
that will positively impact people with disabilities. In
particular, thank you to Chairman Pallone for sponsoring the
Community Living Assistance Services and Supports Act. The
CLASS Act creates a national insurance program to help adults
who have or develop functional impairments so that they may
remain independent, employed and a part of their community.
Funded through a modest voluntary payroll deduction, the CLASS
Act would allow individuals to access supports and services
without requiring them to spend down their assets and become
impoverished to qualify for Medicaid.
A second piece of important legislation which we strongly
support is the Community Choice Act, which emphasizes person-
centered planning and self-directed services. As you have
heard, the Community Choice Act is a step in the right
direction for both the Medicaid program and individuals
requiring long-term supports.
The Arc of New Jersey urges Congress to swiftly pass these
two critical pieces of legislation as well as other legislation
which I mentioned in my written statement. We look forward to
working with you, Chairman Pallone and other members of the
subcommittee, on these and other issues affecting individuals
with intellectual and other developmental disabilities and
their families.
[The prepared statement of Ms. Fortin follows:]
Mr. Pallone. Thank you. Exactly 5 minutes.
Ms. McCormick.
STATEMENT OF AILEEN MCCORMICK, PRESIDENT AND CHIEF EXECUTIVE
OFFICER, AMERIGROUP TEXAS, INC.
Ms. McCormick. Good morning, Chairman. I appreciate the
invitation to be here today and I am from Houston, Texas, but I
must admit, I got there via New Jersey and specifically
Middlesex County, where I was born and raised.
I represent America's health insurance plans. If I may, I
have expanded written testimony that I would like to submit for
the record.
Mr. Pallone. Where were you born in Middlesex County?
Ms. McCormick. New Brunswick.
Mr. Pallone. Oh, terrific.
Ms. McCormick. We are here to discuss the crucial role that
Medicaid plays in meeting the needs of people with
disabilities. AHIP is a national trade association composed of
1,300 health plans which provide coverage to more than 200
million Americans. More than 300 AHIP plans bring health
services to almost 20 million people served by Medicaid. I am
CEO of one of those health plans, AmeriGroup Texas and
southwest region CEO of AmeriGroup Corporation. Our company
provides healthcare coverage to 1.7 million people in 10 States
and the District of Columbia, all of whom are enrolled in
Medicaid and other publicly funded programs. We have been
working for 9 years to help Medicaid better serve people with
disabilities through a nationally recognized program in Texas
called Star Plus. AmeriGroup's chief executive officer, Jim
Carlson, recently said, ``We recognize that healthcare is often
a cause of dependency for people with disabilities. Healthcare
should not be the end for these individuals, it should be a
means to an end, in this case, a full, self-sufficient and
independent life.'' Star Plus has taught us that through
innovation and hard work, Medicaid can offer Americans with
disabilities a full, self-sufficient and independent life.
To explain what that really means, I want to tell you about
Henry. Henry is 75 years old and lost everything in Hurricane
Katrina. He relocated to Austin, where he knew no one. He had
many major health problems including an aortic aneurysm and a
history of seizures. When he got to Austin, he was suffering
from dehydration and exhaustion. He was on 11 different
prescription drugs. He was hospitalized and then went directly
to a nursing home. Henry didn't want to be there. He wanted to
take care of himself but he needed a little help. The expansion
of Star Plus into Austin in February was a catalyst for that
help. AmeriGroup service coordinators completed a detailed
individual assessment of the kinds of services Henry needed to
live independently. Working close with ADAPT, a wonderful
organization and a valued partner of ours that is well
represented here today, we helped him find and furnish an
apartment. We connected Henry with attendant services, Meals on
Wheels and an emergency response system to support his
transition to the community. We again worked with ADAPT and
made sure he saw a doctor and got his prescriptions filled when
were faced with an obstacle from the nursing home in trying to
get him out. The result is that 9 months after leaving a
nursing home, Henry is living on his own and hasn't been
admitted to hospital care once. He is living the life he wants
to live, and Star Plus is not only working for Henry, it is
working as well for Texas taxpayers. By helping Henry avoid
unnecessary stays in hospitals and nursing homes, Star Plus
saves a lot of money.
The Texas Health and Human Service Commission has concluded
that Star Plus sharply reduces inpatient hospital admissions
and cuts overall healthcare costs by 6.5 percent. That is why
after years of carefully nurturing Star Plus as a pilot program
in Houston, the State recently expanded it to three more major
metropolitan areas. Enrollment has more than doubled to
153,000. Star Plus is a rarity in American healthcare, a
program that helps people live better, healthier lives and at
the same time saves money. It does this by tailoring the
healthcare system to fit the needs of individuals instead of
forcing individuals into institutions that do not offer the
right care or services for them.
There are other programs in other States like Star Plus but
there are far too few of them. Star Plus is one of the oldest
and most advanced. Others are still in various stages of
development. We strongly urge Congress to support programs like
this. For example, AmeriGroup has endorsed the Community Choice
Community of 2007, House Resolution 1621. It would eliminate
the historic bias in Medicaid, as has been discussed at length
here, in institution-based healthcare and fund more community-
based programs like Star Plus.
We at AHIP understand that Medicaid is not for everyone.
Those who have adequate financial means must secure healthcare
coverage that meets those needs. However, millions of Americans
with disabilities cannot do this alone. As folks have said,
Medicaid is their lifeline. We must and can make Medicaid work
better both for Americans with disabilities who depend on it
and for American taxpayers who finance it.
Thank you again, Mr. Chairman. I will be happy to take
questions.
[The prepared statement of Ms. McCormick follows:]
Mr. Pallone. Thank you, Ms. McCormick.
And last is Ms. Beckett.
STATEMENT OF JULIE BECKETT, DIRECTOR OF NATIONAL POLICY, FAMILY
VOICES
Ms. Beckett. Thank you, Mr. Chairman and members of the
subcommittee. My name is Julie Beckett and I am the policy
director for Family Voices, a national grassroots organization
of families and friends speaking on behalf of children with
special healthcare needs and their families, but in particular,
I am Katie Beckett's mother, and as you know, Katie was the
first home- and community-based waiver child in 1981. She sits
behind me today and about to turn 30 years old, scaring me to
death, and the important part of this is that we have been
fighting for this for almost these full 30 years, and what I
would like to see is something actually done about providing
home- and community-based care for individuals with
disabilities.
Family Voices' families include a number of individuals who
are transitioning to the adult system of care and who are
anxiously awaiting a life filled with work and play and active
participation in their communities. You see, when given the
types of services needed, many of these children and youth can
live long and prosperous lives but access to important programs
such as Early Periodic Screening, Diagnosis and Treatment,
EPSDT, and special education are critical, especially at an
early age. Life-and-death decisions depend on access to the
necessary services required by this very vulnerable population.
EPSDT provides the best benefit package for our children and
youth with special healthcare needs. Frequently it is necessary
to access Medicaid, even if a child or youth has access to
private health insurance. Private insurance is increasingly
unwilling to provide access to the types of care that these
children and youth need. It is only the protection of EPSDT and
the mandate to cover all medically necessary services that
guarantees our children access to these necessary services. The
Federal Medicaid program has taken steps to limit access to
this vulnerable population by proposing dangerous regulations
that could limit the important therapies needed to sustain
mobility and important physical and mental and life-sustaining
therapies that allow these children and youth to grow in their
communities and participate actively. These therapies and
treatments offer the hope of a better future. It also allows
children and youth with special healthcare needs and their
families to participate more fully in the life of their
communities. These services allow us all to experience children
and youth with special healthcare needs an all they are capable
of so that we as a society define them not by their limitations
but by their capacity for success despite their mental and
physical limitations, and you will note there are several
stories that I have attached to my testimony. The one about
Shane Hafely should demonstrate the importance of these
services.
The Maternal and Child Health Bureau has just released the
latest statistics from the National Child Health Survey, which
is a random telephone interview with households across the
United States. This survey demonstrates that increasingly these
children rely on public health insurance because there has been
no public outcry in response to the denial of medically
necessary services. There also has been no law passed that
mandates that when a physician orders treatment or services
that are medically necessary, that those services should be
paid for by private insurance. The Maternal and Child Health
Bureau's goal to achieve a medical home for every child has
eased some of these concerns as it cuts down on emergency room
care because they now have a consistent source of care and the
services are better organized. In fact, the Medicaid commission
that I was honored to serve on made a recommendation that all
individuals covered by Medicaid receive their care for ma
regular source of care as used in the Maternal and Child Health
Bureau's medical home model. This goal of achieving a medical
home for every child must not be attached to complicated
payment structures like those used in managed care. Payment
incentives can have a negative impact and can limit care that
should be provided. Again, this demonstrates as shown in the
Maternal and Child Health Bureau's national survey. Children
and youth do best when they are part of a medical home and the
cost of care either stays or the same or decreases as families
are financially able to provide for the extensive care needs of
their child or youth.
This too can apply to adult care when targeted case
management helps access the right kinds of services necessary
for an individual to stay in their community and actively
participate in work. The Family Opportunity Act that was built
on the Ticket to Work and Work Incentives legislation provides
for families and individuals with disabilities to access a
Medicaid buy-in program so that these families and individuals
are employable when a company does not have to use all of their
health benefits to pay for services that these workers may
need. I am proud of the fact that my daughter Katie served on
the advisory panel for several years and actively participated
in the beneficiary summit that identified barriers young people
with disabilities face when forced to remain on the Social
Security program that present barriers to their work
participation. The Medicaid buy-in programs give them hope that
some day they may not have to rely on these outdated programs
that restrict what individuals can do.
The Community Choice Act approaches many of these concerns
but families need options. Improvements in Medicaid delivery
certainly would provide them with some choice in helping their
children and young adults survive and prosper. It is agreed
that it would be much more beneficial to efficiently and
effectively manage a benefits program that helps our children
and youth survive rather than relying solely on a cash payment
subsidy and restrictions that limit their options. I hope that
you will look long and hard at the final report of the Ticket
to Work and Work Incentives advisory panel even though this
committee does not have jurisdiction and think about the
decisions you make that could impact its success.
Finally, removing targeted case management from the list of
options makes no sense nor does restricting school-based
incentives that help special-education students achieve in
schools, and of course it makes no sense to limit reimbursement
for therapies that keep their bodies moving in a direction that
keeps them able. Again, EPSDT provides for the most essential
medically necessary services no matter where those services are
provided. Limiting the nature of this program to simply cure
would certainly fly in the face of Congressional intent. I
would hope this committee would examine your options to learn
more about what these initiatives do and the impact of
proposals on real lives and real families.
I have included recommendations for the Subcommittee on
Health and I certainly hope that you will review those. Thank
you very much.
[The prepared statement of Ms. Beckett follows:]
Mr. Pallone. Thank you, and we certainly will, and that
concludes our opening statements. Now we will have questions
from each of the Congressmen and -women.
I am going to recognize myself for 5 minutes initially, and
I wanted to start out by asking Ms. Rowland, some have
advocated making Medicaid look more like private insurance,
scaling back benefits and raising cost sharing on
beneficiaries. Others believe in only providing a capped amount
of money to a disabled individual and letting them contract for
their own personal care services as maybe a better path. My
concern is, what happens when States give people vouchers and
send them off for managed care plans. I know that Kaiser has
done some work on the Florida experience where unfortunately
people with disabilities had difficulty in the counties where
services for people with disabilities were so-called reform. So
would you tell us about these models, whether they fit the
needs of the vulnerable beneficiary and then tell us about the
Florida experience. I am not necessarily trying to put a bad
light on it but I want you to talk about these options.
Ms. Rowland. Well, we have clearly seen that the role
Medicaid plays for people with disabilities is very different
than what is available through employer-based private health
insurance or unavailable really through the individual
insurance market where pre-existing conditions and the cost of
coverage would keep people from coverage so that Medicaid
really does provide for both medical care, which is what
traditional health insurance does, and for all the kinds of
transportation and long-term-care supports that are necessary.
So when we look at people who have private health insurance
coverage and have disabilities compared to those on Medicaid,
we see that those on Medicaid are far more likely to have
serious conditions and those with disabilities covered by
private insurance are less disabled and more able to function
without additional supports.
What we have been evaluating and looking at in Florida is
in the new capitation demonstration where in two counties, now
extended to five, individuals are given a choice of health
insurance managed care plans to participate in. Many of the
people with disabilities have been included in this program and
they tell us that they were very confused about whether they
were even enrolled in the program. They were asked to make a
choice of plans, and the forms they were using looked very
similar to the forms people got on Medicare part B to choose
for their prescription drug coverage so there was a lot of
confusion about where to go. They got enrolled into plans, and
when they went to their counselors found out that their
counselors were giving them some misinformation about whether
they could change or get out, and I think it really does point
out that while choice of plans may be ideal, information and
good counseling on what is available through those plans is
critical. Moreover, in Florida, those plans have the ability to
adapt the benefit package to live within the capitation rate so
we are now going back to evaluate after a year whether the
benefits promised to these individuals when they joined the
plans were actually realized, and many of the people with
disabilities have said that the range of services they need
were not covered within those plans and that some of the
doctors that they were used to seeing, some were in the plan,
some were out of the plans, and we know for people with ongoing
chronic illnesses and severe disabilities, maintaining
coordinated care from the range of providers they need is
critical.
So we really do think one should take great caution in
changing some of the care arrangements and we think case
management and a broad range of community-based services is
perhaps a better way to go than putting people into a capitated
situation where the plan may not be able to meet their full
needs.
Mr. Pallone. I wanted to go to Ms. Fortin because, as you
know, when we had our roundtable in New Jersey, you talked and
some there talked about flexibility in the context of
independent living arrangements versus institutionalization and
that if there is a certain amount of flexibility, then perhaps
that allows States and programs to get away from
institutionalization and more towards independent living.
Mr. Gronefeld mentioned in his testimony the need for more
flexibility in Medicaid waiver services and I know when we had
that roundtable, there was talk about that being a good thing,
but other times that flexibility may come at the expense of
beneficiary needs. In New Jersey we have this cash and
counseling demonstration that was very successful in giving
people a budget to manage their personal care services but the
question is, is that good or has that been a problem? Because
if you have vouchers like they have in Florida, the flexibility
may actually make it more difficult to get services. So I just
want you to talk about that in the context, the whole idea of
flexibility versus caps and how that relates to trying to get
people to avoid institutionalization.
Ms. Fortin. Well, I think that we have to balance the idea
of the flexibility with the oversight, and of course, we are
very concerned about any system that is in place that has the
capitation rates. Individuals with disabilities are just that:
they are individuals and their needs are very individualized
and we can't look at a program where it is the same for all.
Our cash and counseling program in New Jersey is a very
successful program. We feel that the individuals having the
ability to direct and choose their services has allowed them to
get the right services for the individual. We also feel that in
many ways it can be a very cost-effective program as
individuals are able to choose what meets their needs best. For
some individuals with significant intellectual disabilities, we
have some concerns about making sure that there is appropriate
case management and oversight so that the individual is getting
the best services that they can and the ones that properly meet
their needs. So there is a need for a real balance in the
program as well. But obviously as advocates for people with
disabilities, flexibility and that whole idea of self-directed
services is extremely important to us.
Mr. Pallone. Thank you.
Mr. Deal.
Mr. Deal. Thank you, Mr. Chairman. Thanks to all of you for
your testimony and your presence here today.
Let us set the stage, because we have alluded to it from
time to time. When we were working on the Deficit Reduction
Act, then-governor of Virginia, Mark Warner, was the chairman
of the National Governors Association, and one of the primary
motivating forces for the DRA was that Chairman Warner made the
statement that Medicaid was in a meltdown and he was talking
about the pressure that was on States to come up with their
portion of the Medicaid dollars. Now, in that context we still
have that concern. My concern is that knowing those pressures
are there both at the State level and at the Federal level, I
am concerned that when I see statistics like only 15 percent of
Medicaid enrollment is with people with disabilities, isn't
that a significant percentage reduction from what Medicaid used
to be in terms of covering those with disabilities? And when
those pressures are there on these State Medicaid directors,
aren't they sometimes put in a position of making choices that
are not always favorable to those with disabilities? And do we
need to have some pressure to refocus Medicaid emphasis on
those with disabilities? I think we seem to have lost some of
that focus.
Ms. Thomas, am I on the right track about this, and how do
we refocus what Medicaid initially was trying to deal with,
which was in large part the disabled?
Ms. Thomas. Well, I think that other people that get
services like children are also very important and needs to be
done but I think that by passing the Community Choice Act, you
would allow people with disabilities to pick what they want,
and because the services are generally less costly in the
community, you are going to be able to serve more people. What
happens at the State level now is that they are required to do
the nursing home services, and I have sat in the conference
committee rooms where they are struggling with this issue, and
I can tell you that that mandate creates a barrier, and instead
of being for people with disabilities or children or other what
you might call consumers of the services, it winds up being
about providers, and while providers are essential, if you put
more of the choice in the hands of the individual to pick the
kinds of services that they want, then that really helps and
getting rid of that institutional basis is going to be a big
step in the right direction.
Mr. Deal. I was handed during the course of testimony here
today the Medicaid release that was released the day before
yesterday, I think, saying that on Friday of this week the cash
and counseling regulations will be in the Federal Register and
comment will be open for a 30-day period, and I think that is a
good indication obviously they are going forward with
implementing the cash and counseling portion of the DRA and
trying to shift more money into that area so people can do
things like decide who they want to hire, who they want to fire
instead of it being some administrator or some bureaucrat
making those decisions for them because not everybody who is
disabled has the--doesn't have the ability to think for
themselves. They ought to be able to make the choices when they
want to make the choices, and I think that is in the right
direction and I would urge all of you to comment on that as it
opens the comment period as of Friday of this week.
Let me though go to one thing that--as I told you, for 8-1/
2 years my wife and I cared for our family, our mother and
father, her mother, who had Alzheimer's, and my mother, who had
a leg amputated and was in a wheelchair. Her mother and father
and my mother were all retired schoolteachers so therefore
their income level, they were never Medicaid eligible but we
faced the problem of having, how do you get people to help
because I was up here most of the week. My wife was still an
active schoolteacher. Trying to find qualified people, and Mr.
Gronefeld, you mentioned--well, Ms. Thomas too mentioned the
lack of available personnel to assist, and that is true both in
the Medicaid setting and in the private pay setting of people
making these choices. I often ask the question, why don't we
have some people that are just given the basic training to
individuals who want to work but they don't know where to go
and nobody seems to be filling the gap but just basic training.
It doesn't have to--they don't have to be an RN, they don't
even have to be an LPN. They just need some basic instruction,
because not everybody needs that degree of assistance.
Mr. Gronefeld, what is being done to provide these people
that we need to fill these slots?
Mr. Gronefeld. Well, of course, the first thing is
introduction of H.R. 1279 to provide that funding for workers.
You know, there is a lot that can be done. One of the biggest
issues is attracting people to this field. The 42,000 employees
that we have at ResCare are very dedicated and hardworking and
mission driven. We explain their job as being the toughest job
they are ever going to love because they do appreciate what
they do. They are very dedicated to the folks that they serve
and that they support and they become part of their family and
their friends, but one of the issues is the wages, and our--
what we pay in wages is limited by what we are reimbursed. In
addition to that, there is plenty of programs available now in
which we could attract future direct service professionals.
However, because of the requirements within job corps centers
which we are a contractor and workforce investment services and
one-stop services, they don't qualify as part of our outcomes
because of their starting wage rate. The expectation is higher
than what the starting wage is for direct service
professionals. So we could currently be training people in this
field, spending dollars that already exist, that are already
being spent, not spending any more dollars and yet attract more
people to the field. Now, that doesn't solve the living wage
issue. The living wage issue has to be addressed and there has
got to be ways that we look at addressing that and there is
many ways to do that, as I mentioned in my testimony. But at
the end of the day I think there is a lot of people that want
to do this work. There is a lot of caring people in the United
States that would be more than happy to provide these services
but they have to take care of their own families and then that
becomes an issue.
Mr. Pallone. Thank you.
We next have our resident advocate for healthcare
professionals, Mrs. Capps.
Mrs. Capps. Thank you, Mr. Chairman.
I want to thank you each of the witnesses for your
excellent testimony. It is wonderful to see different stories
to tell but on the same page. I want to divide my time between
Ms. Fortin and Ms. Julie Beckett for my time.
Ms. Fortin, as a nurse myself and having extensively worked
on critical issues surrounding the nurse shortage, I am
particularly sensitive to recruitment and retention
difficulties faced amongst the direct support professional
service. This is going to be a carry-on after the ranking
member but I will put it on to you to ask you to see a
connection between the delivery of quality services and the
wages of direct support professionals. Help us understand the
negative impact that low wages have on quality support and on
the choices people with disabilities have for when and where
they receive supports, the choices being a predominant theme.
Just a brief answer on that, please.
Ms. Fortin. From our experience in New Jersey with
recruitment and retention of direct care workers reaching
critical stages, it creates a revolving door for the direct
care workers to work within the individuals. It affects the
quality of care. If you have a different person coming in each
month or each 6 months, that person has to start all over again
to learn about the significant needs, especially for the folks
that we work with who have intellectual disabilities. What we
are looking at in New Jersey is, we have a statewide coalition
for a direct professional workforce. We are looking at ways in
which we can professionalize the career of a direct support
professional through training, through support, and of course,
we are very, very supportive of the Federal legislation which
you sponsored because we can see that those funds being able to
come into New Jersey will help to create added funds to
compensate the direct care workers. If we are able to stop that
revolving door of direct support professionals coming through
the system, we are going to be able to build that base, create
the stability, and in the long run have the funds. Right now
just within The Arc of New Jersey, we can look at vacancy rates
in programs anywhere from 15 to 40 percent in some of our
residential programs. It costs thousands of dollars every time
a direct support professional leaves and a new person has to be
trained. We can take those funds, we can invest them in the
salaries for the direct care workers and we can begin to catch
up on that system.
Mrs. Capps. Such a good response. Thank you. Just for the
record, what is your greatest competition for qualified direct
support personnel? Where do they go to work instead of coming
to work for you?
Ms. Fortin. They go into the private sector, and not
necessarily in healthcare.
Mrs. Capps. Right.
Ms. Fortin. It pains me very much to hear people say how
much they love their work but they are going to have to go work
for a private company in things like administrative support
just because it pays the bills and it has the benefits.
Mrs. Capps. Some of our workforce tell me that they get
recruited by fast food places, and that is a sad day when we
compare ourselves with the kind of work that you do to sell
hamburgers.
Well, I could ask this question of any of you but I want to
speak now to the disabilities in school. A number of years ago
there was some controversy with Medicaid services provided to
children with disabilities in school. Some rather unscrupulous
consultants traveled around the country, sold States and
schools a bill of goods with less than satisfactory results.
This mess was fortunately straightened and things were put back
on track. However, right after Christmas CMS put out a final
rule that would severely restrict access to Medicaid coverage
for certain legitimate activities and particularly specialized
transportation for severely disabled children who receive
medical services during the school day in school and
administrative outreach and enrollment activities to find and
enroll more children in our schools. Ms. Beckett and anyone who
would want to comment on what CMS's rule would mean for
children with disabilities, for example, a child who needed a
respirator-equipped bus to get to school.
Ms. Beckett. Well, thank you very much for asking that
question. I think that the impact in particular would be on the
types of things that children need such as the therapies and
all of that. The transportation issue is getting them where
they can get the best services, and the different requirements
by different individuals, particularly young children, forces
school districts to think about instead of serving them in
school-based programs actually serving them at home, which then
restricts the socialization and all the things that are
necessary. So it is extremely important for us to look at what
this proposal or what this implementation could possibly mean,
and I would hope that somebody would be monitoring what the
impact would be, particularly on school districts.
I just was in Olwine, Iowa--it is about an hour and a half
north of Cedar Rapids--the other night as they talked about
closing a particular program for second graders simply because
of the cost and the mothers who came out in droves saying how
important it was for them not to think about this as a cost
issue as much as to think about it as a personal issue for
their child and that these were children who needed that kind
of care. It is important for us to think about the types of
administrative costs that currently schools endure to help
provide the best special-education services they can for these
children and their families, and in many ways, in many areas,
that is the only thing they are qualified for.
Mrs. Capps. Exactly.
Ms. Beckett. They are not qualified for Medicaid, they may
not be qualified for any other program, and it is really
appalling that we could take that kind of a service away from
those kinds of kids.
Mrs. Capps. Thank you so much. In other words, the CMS
ruling goes directly against the principles of IDEA and so we
do need to address it, and I thank you for your answer and for
my time.
Mr. Pallone. Thank you. We have our other healthcare
professional on the other side of the aisle here, Mr. Burgess.
Mr. Burgess. Thank you, Mr. Chairman, and I want to take
just a moment--Chairman Dingell discussed the visitors and
guests that we have in the hearing today and, Mr. Chairman,
with your indulgence, I want to point out we have visitors and
guests from my district back in Texas. Marsha Gray has brought
her history and government class with her from South Lake,
Texas, Carroll High School. Is it Carroll High School?
Mr. Gray. Carroll Senior.
Mr. Burgess. Carroll Senior High. They wanted to learn and
see what government looked like firsthand up close and
personal, and I said it doesn't get any more up close and
personal than the Energy and Commerce Subcommittee on Health.
So I appreciate them traveling all the way from Texas to be
here today and to witness the hearing that we have going on.
Ms. Beckett, I just wanted to follow up on a point that you
just made on the CMS rule, and that rule has been put out, the
notice of proposed rulemaking has gone forward and now that
rule has been finalized by CMS?
Ms. Beckett. Yes.
Mr. Burgess. So this is something that would take
legislative activity on the part of the Congress to reverse
that?
Ms. Beckett. Well, I think there is an opportunity for you
to address it in a hearing to begin with how the impact itself
could--we have a current moratorium on it so we have like 6
months to collect some information about what is going on, and
I think that would be very helpful if we could look at what the
impact could be on that.
Mr. Burgess. Well, just on a structural question, and
maybe, Mr. Chairman, I should ask you this. Things move with
such glacial speed around here. Perhaps we could ask for
another moratorium in the labor HHS appropriations bill when
that comes up this summer. Is that where this came from, the
moratorium came from in the first place?
Ms. Beckett. Yes.
Mr. Burgess. Mr. Chairman, are you aware, is there an
actual proposed piece of legislation out there that will deal
with this rule from CMS, the rule that affects the caregiver
statute, the levels of funding. Is that correct?
Mr. Pallone. I am not aware of anything but obviously we
are trying to address some of these with the committee as well
but no, I am not aware of any legislation.
Mr. Burgess. Well, it may be a joint project the committee
can take up as we approach the appropriation this summer so we
can get a little bit more time to study what the actual impact
of this will be and make certain we don't do something in a
vacuum of knowledge which of course would never, ever happen up
here.
Mr. Gronefeld, I wanted to just--and probably Dr. Rowland,
I need to involve you in this, and I am sorry I stepped out
when you were talking to Chairman Deal about--or Ranking Member
Deal about the inflexibility issue. You brought up the point
and made a point of talking about the inflexibility of some of
the waivers with which you have to deal and I mean, I will just
tell you, not having been here that long, but looking at a
system that provides care to some of the most vulnerable
citizens in the United States and requires, what, 28 waivers
for it to work properly? I mean, on the face of it, it is not a
sound basis that we built it on. But talk to us a little bit
more about the inflexibility of waivers that you have had to
deal with.
Mr. Gronefeld. Well, a lot of the inflexibility that we
speak of does not necessarily deal with providing services. It
deals with the administration. It deals with costs that are
outside of actually delivering the services, the amount of time
and effort it takes to document the services provided. We have
seen situations where every 15 minutes a direct support
professional has to fill out what they have done, which takes
away from providing care. In Indiana few years ago, they
actually reduced our rates and cut $14 million out of their
budget but with that cut, they simplified the system and they
were able to spend that $14 million to serve more people, and
what I mean by that is that they went to a per diem-type system
based on level of need, so not everybody fit in the same
category. It wasn't a capitated type of system. But it took
away the necessity of all the documentation, all the paperwork.
Mr. Burgess. Let me just ask you, I don't mean to interrupt
but I am going to run out of time. Is the move to more
electronic record keeping, would that be an enhancement in your
mind in that type of activity? Does anybody actually read the
reports that are generated every 15 minutes?
Mr. Gronefeld. Well, that would be an enhancement but to
kind of simplify things and oversimplify things to a point,
outcomes are about the people receiving services. Ask them and
their families what they think. Don't read that on a piece of
paper. They can tell you if they are receiving the quality of
services or not, and that is what outcomes should be about.
Mr. Burgess. Very good.
And with the seconds I have left, Dr. Rowland, I mean, I
have never been a big fan of capitation but tell me again what
are the concerns you had with the capitated system that you
were discussing?
Ms. Rowland. Well, we were looking at the Florida reforms
that were put into place in Broward County. Specifically, there
was a lawsuit actually filed yesterday by some of the
beneficiaries of that program about the fact that it is very
difficult when you are dealing with people with severe
disabilities to establish the right level of risk adjusted
capitation and the way in which that program was structured,
the health plans were given the ability to modify the benefit
package to live within the capitated amount.
Mr. Burgess. Let me interrupt you again. Is that because
there wasn't a correct assessment of risk going in?
Ms. Rowland. I think that it is a very new area of trying
to do the assessment of risk, right, and I think the risk
assessment was not necessarily going to match the
beneficiaries' needs so the plans were given under the waiver
additional discretion to modify the benefit package and several
did but it meant that the beneficiaries felt they were not
getting the full range of services they needed. And I think it
just points out the very difficulty of figuring out in advance
prospectively for some of the most disabled people exactly what
the right capitation amount would be and calls for the need to
have some flexible corridors around which you operate.
Mr. Burgess. I don't disagree. Of course, that is the whole
tentative of capitation but at the same time, a system that
learns ought to be capable over time of making those
adjustments so that if capitation is what the State decides
they want to do, is there not a way----
Mr. Pallone. Let me ask you, Doctor--I am sorry, Dr.
Burgess, but I wanted to get one more person in before we----
Mr. Burgess. I am going to submit that question in writing
and I will yield back, Mr. Chairman.
Mr. Pallone. Let me just mention to the subcommittee, we
have I guess 8-1/2 minutes left. We are going to have a 15-
minute vote and then two 5-minute votes, so what I am going to
ask is, Ms. Baldwin if she would go next and then we will
recess until we come back for those votes. So I recognize Ms.
Baldwin.
Ms. Baldwin. Thank you very much, and I will try to be
brief with my questioning so we can get to the Floor in a
timely manner.
As I said in my opening statement, I am a very strong
supporter of the Community Choice Act and I know that ADAPT has
been working a long time on this bill, in fact, ever since it
was first introduced by a different name as MICASA. It is my
understanding that in 1997 the CBO estimated that that proposal
would cost between $13 and $25 billion but that a recent study
published in the Journal of Aging and Social Policy found that
the proposal would be much less costly, maybe between $1.4 to
$3.7 billion, and I wonder, Ms. Thomas, are you familiar with
that study and could you--are you able to explain how the
approach of the CBO researchers and the ones who did the recent
study differed in terms of arriving at their conclusions?
Ms. Thomas. Yes. Basically the difference was based on the
fact that the original CBO scoring staff was I think somewhat
unclear about who was going to be covered and they included
people that were not eligible because of assets or other--
because of the level of their income, and also their severity
of disability, and that was a very big problem. And then in
addition, that study also--that the CBO did also included
services that are not covered under the bill and so we tried to
clarify the language to clarify what was and wasn't covered but
in addition, I think that the people at University of
California San Francisco who did the study were more careful in
their information and I think their estimation is actually a
lot more accurate.
Ms. Baldwin. Thank you. I think in the interests of time, I
will hold off on any further questions.
Mr. Deal. Mr. Chairman, could I quickly ask unanimous
consent that the testimony of Autism First be included in the
record. I think both sides have reviewed it. I think we need to
hear from many in the disability community, and certainly his
is an aspect that needs to be heard.
Mr. Pallone. So ordered.
Mr. Deal. Thank you.
[The information appears at the conclusion of the hearing.]
Mr. Pallone. And as I said, we will stand in recess until
after these votes. I would assume that would be--I don't know--
about half an hour or so. The subcommittee stands in recess.
[Recess.]
Mr. Pallone. I am asking unanimous consent that the
statement by Mr. Waxman be included in the record. Without
objection, so ordered.
[The information appears at the conclusion of the hearing.]
Mr. Pallone. We were going to go to Mr. Towns because he is
the last person. I think he is in the back room. So we will do
a second round of questions. I think it is just going to be
myself and Mr. Deal and then we will go back to Mr. Towns as
soon as he comes in.
I wanted to ask--go back to Dr. Rowland again. This is with
regard to-oh, he is back. All right. I am going to hold my
questions until after Mr. Towns has had an opportunity. I will
recognize the gentleman from New York.
Mr. Towns. Thank you very much, Mr. Chairman. Let me also
congratulate you and of course Mr. Deal for holding this
hearing. I really, really feel that this is a very important
topic that we are discussing. I also want to thank the
witnesses for being here as well.
I would like to ask Ms. Thomas a question. As you noted,
there are many, many people with disabilities currently in
nursing homes or other institutions that would like to instead
live in the community. In addition, there are many others who
are at home with an informal caregiver network who are barely
getting by or who are going without needed services and
supports because there is no available slots in a Medicaid
program to serve them. Could you give me information on how
many people are on the waiting lists for community-based
services? I know the availability of these services has been
increasing over time but how can we help move more people into
the community and make certain that those in the community are
also having their needs met? Because I think that sometimes we
move them out without the necessary support system. So could
you answer that, Ms. Thomas?
Ms. Thomas. Well, it is my understanding that there is
about 280,000 people on waiting lists for waiver services.
About 150,000 of them are people with--who are waiting for what
they call MRDD services. About 120,000 are waiting for aged and
disability services, and there are about 11,000 children with
disabilities waiting for services. And really, if we could end
the institutional bias and the mandate for nursing homes and
institutional services and just allow, say these are the people
that we want to serve and we will let them choose how they get
the services that they need. We could go a long way towards
ending that waiting list. We would be saving money on the
people that are in institutions and want to get out because the
cost is about two-thirds of what it is--it is about two-thirds
in the community for what it is in the institution so you could
be serving three people for every two that you are serving now.
And we would really make a big, big difference in people's
lives. It would be much more humane, much better services.
Mr. Towns. It is easy to say let people move to the
community but if everyone all at once left institutions for the
community, would we have enough affordable housing options for
people with disabilities? Are there other pieces of the puzzle
that we need to fit in here to ensure that we have a smooth
transition?
Ms. Thomas. I would love it if everyone could do it all at
one moment and everything was--but it isn't going to happen
like that. It is going to happen in a lot more piecemeal way,
and one thing that is a concern to us is that the perfect
become the enemy of the good or we wait for every piece to be
in place before we move. But that said, there are other pieces
that do need to happen.
Mr. Towns. Ms. Beckett, let us switch roles just for a
moment. What should we be doing? Let us switch roles. You are
now a member of Congress. What should we be doing? We are
switching roles.
Ms. Beckett. Well, I think there are several things that
Congress can do, I think looking into expanding the
possibilities for individuals with disabilities. I think
Stephanie is absolutely right, housing is a really an important
aspect of it. Transportation is an important aspect of it.
Instead of looking at how these people qualify, we ought to be
looking at whether we can do more for more people to remain in
their communities and at home. That means supporting their
families when they are young, supporting young adults so that
they can go to work, supporting individuals with disabilities
so that they can live in their communities, making that
available to them. Katie was denied access to Section 8 housing
because she was working on an advisory panel for the Social
Security Administration. We totally understood that. But to try
to gain access to anything, you have got to meet this level of
absolutely no income whatsoever to even participate. That was a
county-based program. I mean, it is very frustrating that
everything is so piecemeal that you can't ever put anything
together for everybody. I think one of the things that Aileen
mentioned was the importance of case management services or
care coordination. Having someone who can help you work through
the system with you and provide those kinds of services is
extremely important. It think having that--getting attendant
care is really important. It is a major aspect of this. You
really have to look at the broad-based spectrum of what
individuals with disabilities as young adults are facing out
there and move every obstacle you possibly can that are
barriers to try to get them into the workforce. Working with
the private sector to talk about the importance of their
ability to work and their willingness to work, I think
overcoming some of those barriers. A lot of times people don't
know how to deal with that. And Katie has been very lucky in
the fact that she is in her own apartment. She lives in a
building downtown. It is not ideal per se except it is close to
public transportation, it is close to the public library. It is
where she is going to volunteer. Getting her a job has been
extremely difficult because she has been serving on this
advisory panel but now that has finished and so we are facing
where her next steps will be. Why is it so complicated and why
is it so difficult? It is time to partner with the private
sector. Public government needs to work with the private sector
to come up with ways of helping individuals with disabilities
succeed in their community, and work as a natural aspect to
that, but if you restrict school-based funding, if you restrict
rehabilitation services, they are not going to be able to do
that, and that just is wrong, and special education is the
precursor to work. It should be. It should be what gets people
ready to go, and those kinds of services are absolutely
necessary. Medicaid should not be restricting reimbursement for
those kinds of things.
Mr. Towns. Thank you. Thank you very much.
Mr. Pallone. Thank you. We are going to have a second round
here with just a few questions and then we are going to--then
we will finish today. Did you have a comment?
Ms. Beckett. Mr. Chairman, could I just add one thing?
Earlier Congressman Burgess asked about the moratorium on
school-based services. There is--in the final slew of things
that went on, there was a moratorium put into the final bill
and there is a moratorium on implementation of that regulation.
That is a final rule but it was put on hold for 6 months.
Mr. Pallone. Six months, yes.
Ms. Beckett. But, if after 6 months if we don't do
something about it, it is going to go into effect and that is
really deadly.
Mr. Pallone. We are very much aware of that and that is one
of the reasons why we are having this hearing today actually.
Ms. Beckett. I just wanted to make sure.
Mr. Pallone. Absolutely. I just wanted to ask--oh, I am
sorry. You are next. I am next? All right. I am next. OK.
I wanted to ask about the CLASS Act, and I guess I would
ask Dr. Rowland or Ms. Fortin again. Part of the reason I
introduced the CLASS Act is because I recognized that
utilization of long-term-care services is on the rise and is
going to increase as the population continues to age, and I
think many Americans are under the impression all their
healthcare needs including long-term-care needs will be covered
by Medicare when they are older. I know that sounds incredible
because you are all so knowledgeable but it is true. A lot of
people really believe that. What they don't realize is that
Medicare doesn't really provide these types of services, only
in limited instances, and as a result they don't plan ahead. So
if I could ask Dr. Rowland or Ms. Fortin, could you comment on
why it is important to get Americans to think about their long-
term needs sooner rather than later and how a voluntary opt-out
system like the CLASS Act might work, whether you think it
would be beneficial to achieve that goal?
Ms. Rowland. Well, I certainly think that we are facing an
aging issue and a disability issue that cannot be solved by
Medicaid alone, and one of the real challenges that has always
been there is that when we get to the kind of long-term-care
services and supports that people need, they don't get them
through the Medicaid program and they can only get them through
Medicaid if they meet the most strict income and asset tests
and therefore have to be virtually impoverished to be able to
get any assistance. So as we look at the challenges of an aging
society and the challenges of a society where people with
disabilities want to live at home and in the community and not
be forced into institutions, I think anything we can do to
promote broader options to help improve access to these kinds
of services at levels of income that are not so means tested as
the Medicaid program. It is not to say that Medicaid isn't
critical and isn't an underpinning but I think we really need
to begin to look more broadly at how we can build some of these
services either into a Medicare-related program or into a more
Title--we used to call it Title 21. Title 21 is now being used
for something else. But to really try to have a way in which
people can early on begin to contribute toward having the
security of a broad and long-term-care and supportive services
set of programs to wrap around just as well as the Medicare
medical benefits are there.
Mr. Pallone. Thank you.
Ms. Fortin, did you want to comment?
Ms. Fortin. Well, we are really supportive of this because
working with people with intellectual and developmental
disabilities, one of the huge issues is their ability to buy
into a long-term-care program so this would remove some of the
biases that they might face, and again, we go back to the whole
issue of everybody needs to worry about long-term care, whether
it is for a family member or for themselves, eventually the
majority of people are going to need these services in the
future. If we can put a program in place that will reduce the
need for the Medicaid system and also for individuals so they
don't have to impoverish themselves in order to be eligible for
the Medicaid system. So the CLASS Act goes a long way to meting
several of the needs.
Mr. Pallone. All right. Let me just finish up, and going
back to--thank you--Ms. Beckett's point about the 6-month
moratorium on the CMS rule that limits rehab services under
Medicaid. Would you talk about the consequences, if you will,
if this were to go into effect. I mean, obviously we don't want
it to but if you would talk about that.
Ms. Beckett. Well, I think one of the major consequences
is, school districts in this country will be forced to choose
between healthy kids and kids in special education. I don't
think that is right and it is absolutely against the ideal of
education and the importance of education in this country. I
think in many ways what it will do is, those administrative
costs allow for the ability for them to do some kind of care
management in a school classroom, whether it is paying for a
school nurse, helping to pay for a school nurse in that
building or what is going on but I think it is really important
for us to think about the therapies that these kids really
need, in particular physical therapy, occupational therapy,
speech therapy in particular. Those kinds of things will be
restricted and we can't afford to have that happen. We really
want our young people, our young adults to be ready to go into
the workforce and they are not going to be ready if what we do
is restrict those kind of reimbursements for those types of
services.
Mr. Pallone. OK. Thank you.
Mr. Deal.
Mr. Deal. I will try to be real quick. I mentioned that we
have a private facility in my hometown that is a not-for-profit
designed to try to assist young adults who are disabled in a
home setting and ran into quirky rule--and I am not sure where
it comes from, maybe some of you can tell me--that one of the
residents was on the initial board and lived in the facility
and apparently it violated the rules and he had to move out in
order to stay on the board. Now, this is sort of contrary to
what we have with public housing in which your board has to be
made up of a certain percentage of the residents. Have any of
you run into that before? I am still trying to track down where
that is coming from. OK, anyway, to another issue.
Ms. Beckett, I certainly agree with you on the employment
side of it. I think one of the important things is to make life
as full as possible and people with disabilities who can work
ought to be encouraged to do so. That sort of ties in through
the Department of Labor situation with something that Mr.
Gronefeld mentioned earlier about the personnel and some of the
impediments to employment there. Are there Department of Labor
restrictions that you encounter in the employment of disabled
people, and if so, what are they?
Ms. Beckett. It is not really the Department of Labor
although labor is a part of all of this. One of the--I think
the biggest thing is the fear that they are going to lose the
types of benefits that they need when they go to work plus it
is also on the part of the employer, their concern about having
to pay for the health benefits of an individual with a
disability. Katie doesn't have a very good track record and so
an employer looks at her as a liability as opposed to a
positive aspect of what it is she can provide. When you are
going up against that, that is just totally irrational, when
you think about it.
Mr. Deal. Well, I agree with that.
Ms. Beckett. I think it is really important for us to make
sure that the Department of Labor is reaching out to different
employers and talking about--and helping them to work through
some of the issues that people with disabilities really have
that could be beneficial employees to them.
Mr. Deal. We have a rehabilitation workshop in our
community which does pay at a reduced rate but it does provide
employment there, and I suppose they come under some kind of a
labor standard waiver. You are saying it probably needs to be
expanded?
Ms. Beckett. It absolutely needs to be expanded. We have
Goodwill in Cedar Rapids. That is not an appropriate placement
for Katie. She really needs to be in the workforce. She has
been a receptionist in the past. She has done--she has worked
from the time she was 16 years old, and as a matter of fact,
the person who hired her was the manager of a record shop. As a
teenager, you can imagine what that meant. And she asked her if
she would like to work for her because Katie knew all of these
things about when releases were supposed to take place and who
are the best artists and the whole 9 yards. Well, that is what
we need is somebody who is not afraid of that.
Mr. Deal. I agree.
Ms. Beckett. And at the time, because we are in a small
community, that is something you can overcome but over time it
is really difficult when there is more and more fear about
healthcare and the rise of healthcare costs. That becomes a
real problem. Katie is now meeting with Rockwell International,
has a new government contract. They build airplanes and do all
that kind of stuff, communications, and they need 310 employees
and they are meeting with Katie to talk about how they could
hire people with disabilities and not have to worry about the
healthcare costs because it is very difficult. Well, we have a
wonderful Medicaid buy-in program in the State of Iowa. It is
not overly utilized. We would like to see it utilized more. But
it is an opportunity, and our State Medicaid director says it
is too difficult to figure out how to do those premium things
and all of that. If people really need Medicaid, they should be
able to buy into the program and not have to pay the premium
for it. So he doesn't--they don't charge premiums in the State
of Iowa, even on a Medicaid buy-in program. So to me, those are
the kinds of things that States can really be encouraged to do
that would help individuals, young adults in particular, get to
work.
Mr. Deal. I think we all need to work on that.
Very quickly, Mr. Chairman, if I might just ask Mr.
Gronefeld to elaborate once again on--you say that we have
programs in place that are trying to put people in an
employable status and yet we have the shortage in this
healthcare arena. Would you elaborate specifically about the
kind of impediments that are there?
Mr. Gronefeld. Well, there are two primary impediments. One
is, the average wage rate that is expected in order to be a
successful placement. Both the job corps program and programs
under the Workforce Investment Act and TANF require specific
wages in order to measure success of the contractors putting
people to work. Unfortunately, the wages for direct services
professionals are below that threshold and so that hurts the
outcomes. And, again, as I mentioned earlier, we need to get
those wages up and we could get a lot more people into the
system and providing services in this field if we could remove
some of those impediments to getting people trained and into
the programs.
Mr. Pallone. I just wanted to ask one question, then we
will wrap it up. When you were talking about Katie's track
record, do you mean in terms of services that are available to
her? What were you referencing?
Ms. Beckett. Well, what I was referencing is the fact that
she was a million-dollar baby before she was 2\1/2\ years old.
Mr. Pallone. Oh, OK.
Ms. Beckett. So her track record is not very good when it
comes to healthcare services and needing that healthcare. What
a lot of people don't realize is, once I became a University of
Iowa employee and that was in 1984, because they are a large
group employer, they could not--they had to accept Katie as a
part of their plan so she actually--while she has the Medicaid
waiver and now she has a little bit of Medicare because she is
old enough to do that, she also has private health insurance,
and private health insurance has paid most of Katie's bills as
opposed to Medicaid because I went to work for the University
of Iowa. I no longer teach, and the teachers who were here
earlier--and I have to tell you, that has been a really
difficult situation for me. Every September I miss going to my
classroom and I miss my kids because that is what my life
should have been. Instead, I am here. I am thankful that I get
to be here but it is also not my life, not the way I would have
liked it to be, but I can't help that. I work for--everybody in
this country anymore works for their benefits and Katie's
benefit is that she gets to be covered by health insurance,
private health insurance. Even though she has this wonderful
Medicaid waiver program that is very, very helpful to her, even
Medicaid doesn't get coverage for everything you absolutely
need to have. But you would think she would be covered on
everything if she has all three of those, and she is still not.
So I just--that is what I meant by track record. When I say she
is my million-dollar baby, I am mean she is my million-dollar
baby. Thank you.
Mr. Pallone. Thank you so much. Thank you, all of you. We
really appreciate your being here today. Understand that this
is basically a broad hearing because we wanted to her about
some of the problems relative to these rules that might go into
effect and also wanted to hear some comments about legislation
but we do intend to follow up, and I would just remind
everybody, my colleagues as well as the panel, that you may--
members are allowed to submit additional questions for the
record within 10 days or so, so you may get some additional
questions that we would ask you to respond to in writing.
But again, thank you all and thank you for all the
advocacy. I should say that in my district over the years, and
of course Ms. Thomas, your group in particular, but everyone
has always been very effective in bringing attention to
disability issues ha are our district office or whenever I have
a town meeting, I always have representatives from the
community that show up and I think that that advocacy is really
important, so please, I am sure you will continue to do it but
I do want you to know that it is effective.
And without objection, the subcommittee hearing is
adjourned.
[Whereupon, at 1:05 p.m., the subcommittee was adjourned.]
[Material submitted for inclusion in the record follows:]