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45–841 2008

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 

EDWARD J. MARKEY, Massachusetts 

RICK BOUCHER, Virginia 

EDOLPHUS TOWNS, New York 

FRANK PALLONE, JR., New Jersey 

BART GORDON, Tennessee 

BOBBY L. RUSH, Illinois 

ANNA G. ESHOO, California 

BART STUPAK, Michigan 

ELIOT L. ENGEL, New York 

ALBERT R. WYNN, Maryland 

GENE GREEN, Texas 

DIANA DEGETTE, Colorado 

Vice Chairman 

LOIS CAPPS, California 

MIKE DOYLE, Pennsylvania 

JANE HARMAN, California 

TOM ALLEN, Maine 

JAN SCHAKOWSKY, Illinois 

HILDA L. SOLIS, California 

CHARLES A. GONZALEZ, Texas 

JAY INSLEE, Washington 

TAMMY BALDWIN, Wisconsin 

MIKE ROSS, Arkansas 

DARLENE HOOLEY, Oregon 

ANTHONY D. WEINER, New York 

JIM MATHESON, Utah 

G.K. BUTTERFIELD, North Carolina 

CHARLIE MELANCON, Louisiana 

JOHN BARROW, Georgia 

BARON P. HILL, Indiana 

JOE BARTON, Texas 

Ranking Member 

RALPH M. HALL, Texas 

FRED UPTON, Michigan 

CLIFF STEARNS, Florida 

NATHAN DEAL, Georgia 

ED WHITFIELD, Kentucky 

BARBARA CUBIN, Wyoming 

JOHN SHIMKUS, Illinois 

HEATHER WILSON, New Mexico 

JOHN B. SHADEGG, Arizona 

CHARLES W. ‘‘CHIP’’ PICKERING, 

Mississippi 

VITO FOSSELLA, New York 

STEVE BUYER, Indiana 

GEORGE RADANOVICH, California 

JOSEPH R. PITTS, Pennsylvania 

MARY BONO, California 

GREG WALDEN, Oregon 

LEE TERRY, Nebraska 

MIKE FERGUSON, New Jersey 

MIKE ROGERS, Michigan 

SUE WILKINS MYRICK, North Carolina 

JOHN SULLIVAN, Oklahoma 

TIM MURPHY, Pennsylvania 

MICHAEL C. BURGESS, Texas 

MARSHA BLACKBURN, Tennessee 

——— ——— 

PROFESSIONAL STAFF

DENNIS B. FITZGIBBONS, Chief of Staff 

GREGG A. ROTHSCHILD, Chief Counsel 

SHARON E. DAVIS, Chief Clerk 

DAVID CAVICKE, Minority Staff Director 

(II)


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(III) 

SUBCOMMITTEE ON HEALTH

FRANK PALLONE, JR., New Jersey, Chairman 

HENRY A. WAXMAN, California 

EDOLPHUS TOWNS, New York 

BART GORDON, Tennessee 

ANNA G. ESHOO, California 

GENE GREEN, Texas 

Vice Chairman 

DIANA DEGETTE, Colorado 

LOIS CAPPS, California 

TOM ALLEN, Maine 

TAMMY BALDWIN, Wisconsin 

ELIOT L. ENGEL, New York 

JAN SCHAKOWSKY, Illinois 

HILDA L. SOLIS, California 

MIKE ROSS, Arkansas 

DARLENE HOOLEY, Oregon 

ANTHONY D. WEINER, New York 

JIM MATHESON, Utah 

JOHN D. DINGELL, Michigan (ex officio) 

NATHAN DEAL, Georgia, 

Ranking Member 

RALPH M. HALL, Texas 

BARBARA CUBIN, Wyoming 

HEATHER WILSON, New Mexico 

JOHN B. SHADEGG, Arizona 

STEVE BUYER, Indiana 

JOSEPH R. PITTS, Pennsylvania 

MIKE FERGUSON, New Jersey 

MIKE ROGERS, Michigan 

SUE WILKINS MYRICK, North Carolina 

JOHN SULLIVAN, Oklahoma 

TIM MURPHY, Pennsylvania 

MICHAEL C. BURGESS, Texas 

MARSHA BLACKBURN, Tennessee 

JOE BARTON, Texas (ex officio) 


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(V) 

C O N T E N T S 

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 


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(1) 

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 


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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 longterm 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 longterm 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 


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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 communitybased 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 Medicaidcovered 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 


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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 communitybased 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 


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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 homebased 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 


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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 


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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 livVerDate Aug 31 2005 23:45 Dec 19, 2008 Jkt 045841 PO 00000 Frm 00013 Fmt 6633 Sfmt 6633 E:\HR\OC\A841.XXX A841

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ing 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 communitybased 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:] 


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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 


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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 homeand 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 


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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. 


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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 


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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. 


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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 


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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:] 


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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 deVerDate Aug 31 2005 23:45 Dec 19, 2008 Jkt 045841 PO 00000 Frm 00028 Fmt 6633 Sfmt 6602 E:\HR\OC\A841.XXX A841

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termined 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 


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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:] 


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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 


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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-inlaw 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:] 


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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 onestop 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. 


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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:] 


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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 


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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:] 


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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 


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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 institutionbased 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:] 


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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 


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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 


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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:] 


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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 


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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, thengovernor of Virginia, Mark Warner, was the chairman of the National Governors Association, and one of the primary motivating 


smartinez on PROD1PC64 with HEARING
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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 


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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 


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the direct support professional service. This is going to be a carryon 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 reVerDate Aug 31 2005 23:45 Dec 19, 2008 Jkt 045841 PO 00000 Frm 00142 Fmt 6633 Sfmt 6602 E:\HR\OC\A841.XXX A841

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strict 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. 


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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 


smartinez on PROD1PC64 with HEARING
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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. 


smartinez on PROD1PC64 with HEARING
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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. 


smartinez on PROD1PC64 with HEARING
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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 twothirds 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 qualVerDate Aug 31 2005 23:45 Dec 19, 2008 Jkt 045841 PO 00000 Frm 00147 Fmt 6633 Sfmt 6602 E:\HR\OC\A841.XXX A841

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ify, 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. 


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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 longterm-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 indiVerDate Aug 31 2005 23:45 Dec 19, 2008 Jkt 045841 PO 00000 Frm 00149 Fmt 6633 Sfmt 6602 E:\HR\OC\A841.XXX A841

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viduals 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 


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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 buyin 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 

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ful 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 21⁄2 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 


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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.] 

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