S. HRG. 110–815

HOME- AND COMMUNITY-BASED CARE:

EXPANDING OPTIONS FOR LONG-TERM CARE

HEARING

BEFORE THE

COMMITTEE ON FINANCE

UNITED STATES SENATE

ONE HUNDRED TENTH CONGRESS

FIRST SESSION

SEPTEMBER 25, 2007

(

Printed for the use of the Committee on Finance

HOME- AND COMMUNITY-BASED CARE: EXPANDING OPTIONS FOR LONG-TERM CARE

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WASHINGTON : 

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48–861—PDF 2007

S. HRG. 110–815

HOME- AND COMMUNITY-BASED CARE:

EXPANDING OPTIONS FOR LONG-TERM CARE

HEARING

BEFORE THE

COMMITTEE ON FINANCE

UNITED STATES SENATE

ONE HUNDRED TENTH CONGRESS

FIRST SESSION

SEPTEMBER 25, 2007

(

Printed for the use of the Committee on Finance

COMMITTEE ON FINANCE

MAX BAUCUS, Montana, Chairman

JOHN D. ROCKEFELLER IV, West Virginia

KENT CONRAD, North Dakota

JEFF BINGAMAN, New Mexico

JOHN F. KERRY, Massachusetts

BLANCHE L. LINCOLN, Arkansas

RON WYDEN, Oregon

CHARLES E. SCHUMER, New York

DEBBIE STABENOW, Michigan

MARIA CANTWELL, Washington

KEN SALAZAR, Colorado

CHUCK GRASSLEY, Iowa

ORRIN G. HATCH, Utah

TRENT LOTT, Mississippi

OLYMPIA J. SNOWE, Maine

JON KYL, Arizona

GORDON SMITH, Oregon

JIM BUNNING, Kentucky

MIKE CRAPO, Idaho

PAT ROBERTS, Kansas

JOHN ENSIGN, Nevada

RUSSELL SULLIVAN, Staff Director

KOLAN DAVIS, Republican Staff Director and Chief Counsel

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C O N T E N T S

OPENING STATEMENTS

Page

Baucus, Hon. Max, a U.S. Senator from Montana, chairman, Committee

on Finance ............................................................................................................ 1

Grassley, Hon. Chuck, a U.S. Senator from Iowa ................................................. 3

CONGRESSIONAL WITNESS

Harkin, Hon. Tom, a U.S. Senator from Iowa ....................................................... 4

PUBLIC WITNESSES

Liston, Bob, director, Montana Fair Housing, Missoula, MT .............................. 7

LaPlante, Mitchell, associate professor, Department of Social and Behavioral

Sciences, University of California, San Francisco, CA ...................................... 10

Flood, Patrick, deputy secretary, Vermont Agency of Human Services, Waterbury, VT ................................................................................................................ 13

Concannon, Kevin, director, Iowa Department of Human Services, Des

Moines, IA ............................................................................................................. 16

ALPHABETICAL LISTING AND APPENDIX MATERIAL

Baucus, Hon. Max:

Opening statement ........................................................................................... 1

Bunning, Hon. Jim:

Prepared statement .......................................................................................... 37

Concannon, Kevin:

Testimony .......................................................................................................... 16

Prepared statement with attachment ............................................................. 38

Flood, Patrick:

Testimony .......................................................................................................... 13

Prepared statement with attachments ........................................................... 50

Grassley, Hon. Chuck:

Opening statement ........................................................................................... 3

Harkin, Hon. Tom:

Testimony .......................................................................................................... 4

LaPlante, Mitchell:

Testimony .......................................................................................................... 10

Prepared statement .......................................................................................... 84

Responses to questions from committee members ......................................... 89

Liston, Bob:

Testimony .......................................................................................................... 7

Prepared statement with attachments ........................................................... 94

Responses to questions from committee members ......................................... 132

Smith, Hon. Gordon H.:

Prepared statement .......................................................................................... 135

Stabenow, Hon. Debbie:

Prepared statement .......................................................................................... 137

Page

IV

COMMUNICATIONS

Communications from organizations:

Access Living of Metropolitan Chicago ........................................................... 139

The ADAPT Community .................................................................................. 140

Alliance for Retired Americans ....................................................................... 145

American Association of Homes and Services for the Aging (AAHSA) ........ 153

American Health Care Association (AHCA) ................................................... 156

CAREtenders .................................................................................................... 173

Independent Living, Inc. .................................................................................. 212

National Council on Independent Living (NCIL) ........................................... 215

Northwestern Illinois Center for Independent Living ................................... 271

Service Employees International Union (SEIU) ............................................ 272

Statewide Independent Living Council of Kansas ......................................... 274

Three Rivers Center for Independent Living ................................................. 294

Westchester Independent Living Center, Inc. (WILC) .................................. 296

West Suburban Access News Association (WSANA) ..................................... 297

University Legal Services ................................................................................ 298

Communications from individuals:

Almore, Michele ................................................................................................ 301

Blackburn, Craig .............................................................................................. 302

Brignac, Letha .................................................................................................. 303

Buckland, Lisa .................................................................................................. 304

Burton, Tammy ................................................................................................. 305

Caldwell, Rick ................................................................................................... 307

Cook, Barbara ................................................................................................... 309

Copeland, Kristine ............................................................................................ 311

Costley, Jerry .................................................................................................... 312

Cronk, Jim ........................................................................................................ 314

Doktor, David .................................................................................................... 316

Edgar, Nora ....................................................................................................... 317

Evans, Cheryl ................................................................................................... 318

Exum, Debra ..................................................................................................... 319

Felts, Ann .......................................................................................................... 320

Holtsoi, Douglas ................................................................................................ 321

Jackson, Mark ................................................................................................... 326

Jaqueth, Brooke T. ........................................................................................... 327

James, Sheila .................................................................................................... 328

Karpinska-Prehn, Beata .................................................................................. 329

Knechtges, Richard ........................................................................................... 330

Kuehn, Dixie ..................................................................................................... 331

Landis, Doug ..................................................................................................... 332

Lee, Steckley ..................................................................................................... 334

Marshall, Gary T. ............................................................................................. 335

Morgan, Les Paul ............................................................................................. 336

Parsons, Lillian ................................................................................................. 337

Paschal, Dawn Dupre ́ ....................................................................................... 338

Ratcliff, Ginger ................................................................................................. 339

Scallan, Karen .................................................................................................. 340

Senechal, Harold ............................................................................................... 341

Smith, Brenda and Jim .................................................................................... 343

Steen, Gail ......................................................................................................... 344

Tezeno, Gwendolyn and Olivia ........................................................................ 346

Turner, Tom ...................................................................................................... 347

Westfall, Linda ................................................................................................. 348

Wilber, Allison .................................................................................................. 349

Williams, Dianne N. ......................................................................................... 350

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HOME- AND COMMUNITY-BASED CARE:

EXPANDING OPTIONS FOR LONG-TERM CARE

TUESDAY, SEPTEMBER 25, 2007

U.S. SENATE,

COMMITTEE ON FINANCE,

Washington, DC.

The hearing was convened, pursuant to notice, at 10:08 a.m., in

room SD–G50, Dirksen Senate Office Building, Hon. Max Baucus

(chairman of the committee) presiding.

Present: Senators Kerry, Lincoln, Wyden, Schumer, Salazar,

Grassley, Snowe, Smith, and Bunning.

OPENING STATEMENT OF HON. MAX BAUCUS, A U.S. SENATOR

FROM MONTANA, CHAIRMAN, COMMITTEE ON FINANCE

The CHAIRMAN. The hearing will come to order.

In July of 1776, the bell of Philadelphia’s Independence Hall

rang to summon Americans to the birth of an independent Nation.

On that bell were cast the words from Leviticus: ‘‘Proclaim liberty

throughout all the land, unto all the inhabitants thereof.’’

Americans value freedom. Americans value independence. The

people from my own State of Montana have an independent spirit.

They take pride in taking care of themselves. But not all Americans have the freedom to live independently. People with disabilities and the elderly, especially those who are also poor, face barriers to living independently. They face barriers to living where

they choose, and they face barriers to traveling across town.

Medicaid provides the bulk of services to low-income elderly and

people with disabilities, but Medicaid’s payment limitations can restrict where people live or receive health care.

For example, Medicaid pays for personal care assistance only

when it is provided in an institutional setting, like a nursing home.

When people with disabilities need these services and cannot afford

to pay for them, Medicaid pushes them into an institution.

Many low-income people with disabilities pay for Medicaid services with their independence. They lose the right to decide when

they use the phone, they lose the right to decide what food they eat

and when they eat it, and they lose the right to decide what time

to wake up or to go to bed.

Mark Bowman faced that choice. Mark was born with muscular

dystrophy. He was eventually put on a respirator. He needed assistance with his respirator, but he did not need the intensive care

that a nursing home provides. Mark wanted to continue living on

his own, but was unable to arrange or afford in-home care.

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To receive the care that he needed to stay alive, Mark entered

a nursing home at the age of 25. But Mark was determined to find

another way. Five years later, he moved to Montana. There, a

State Medicaid waiver allows him to receive these services in his

own apartment. Today he lives independently, attends college, and

has more control over his own life.

Long-term care can enable many individuals with disabilities to

work or return to work. The Finance Committee heard about these

issues at a field hearing just this past June.

Jim Brown testified at that hearing. Jim broke his neck on a trip

to Hungary. He testified that, if he received more help with personal care, he could return to work. Like Mark, Jim did not need

a high level of care, he just needed help with some of his daily care.

He was not asking for a handout; he just wanted to be a productive

member of his community.

Limitations on independent living also affect the elderly. A recent study showed that nearly 3⁄4 of people over age 50 prefer to

receive care in their homes. More people today are choosing to ‘‘age

in place.’’ The share of people over 75 years old in nursing homes

fell from 9.5 percent in 1985 to 6.5 percent in 2004. This shift reflects the growth of less restrictive types of care, from assisted living to adult day care.

These alternatives are usually less expensive than nursing

homes, and these alternatives often provide a better quality of life.

Assisted living and adult day care often require more from family

caregivers. It has been estimated that unpaid caregivers provide

$350 billion worth of services a year. That is nearly as much as the

Nation spends on all of Medicare.

As the baby boom generation ages, providing long-term care to

the elderly will be a growing challenge. States are increasingly concerned about the costs. States view community-based services as a

way to control those costs. States that have enabled people to move

out of nursing homes and back into the community generally save

money.

The need for long-term care does not discriminate. Any one of us,

or a loved one, could need long-term care at any time. Today we

focus on an important component of long-term care, that is, homeand community-based services. We will hear from Senator Harkin,

author of the Community Choice Act. Then we will hear from individuals with experience with accessing, providing, and evaluating

home- and community-based services.

I want to acknowledge that Senator Grassley took great strides

to expand State flexibility in offering home- and community-based

services through the Deficit Reduction Act of 2005. He did so at a

time when the Finance Committee was charged with finding savings in the Medicaid program. So I commend him. I commend you,

Senator, for taking those steps, and certainly at the time that you

did.

Senator GRASSLEY. Thank you.

The CHAIRMAN. And so let us look for ways to summon Americans to the birth of a more independent Nation. Let us strive to

give new life to the words from Leviticus cast on the Liberty Bell.

Let us work to extend liberty and independence throughout the

land to all Americans. [Applause.]

3

The CHAIRMAN. I appreciate the feelings of people in the audience, but I do urge all of us to keep our demonstrations at an absolute minimum, because we have lots of work to conduct here. I just

want to thank all of you, and I thank Senator Grassley. Thank you.

OPENING STATEMENT OF HON. CHUCK GRASSLEY,

A U.S. SENATOR FROM IOWA

Senator GRASSLEY. Well, thank you very much, Mr. Chairman,

for your recognition of what I accomplished in the Deficit Reduction

Act. But more importantly, what we are talking about now is the

future, not the past. So I want to thank Senator Harkin for being

here as well, because he is a long-time leader in this area.

Then both of us have the privilege of having Dr. Kevin Concannon here from our State Department of Human Services in Des

Moines, IA. We have had the good fortune of Dr. Concannon having

been in similar positions in other States, so we got a real professional when he came to Iowa. I am glad to have him be a witness.

Today’s hearing is one of a series over the past several Congresses on this very important topic of home- and community-based

care. Over time, we realize that many, many physically challenged

people would prefer to live in the community. Many of these people

have been placed in institutions because of payment bias in Medicaid. In addition, our population is aging, and we, of course, need

to face the fact that more of us will need help in the most basic

aspects of living.

Just as I endorsed choice of health plans for Medicare beneficiaries, I endorse a choice for those needing long-term care. For

some people and their families, an institution may be their choice

for long-term care. Many others, however, prefer to receive care at

home or in the community.

In fact, that is the trend. In the Deficit Reduction Act of 2005,

referred to by Senator Baucus already, we included $1.75 billion in

grants for major demonstration programs. This year, CMS awarded

$1.4 billion to 31 States, including our State of Iowa. These States

intend to move more than 37,000 people from institutions to community.

In addition, we have given the States the option to allow people

to manage their own care. They get a budget and they may contract with caregivers and providers however they decide to do. This

option may not be for everyone, but in Iowa the State Department

of Human Services is demonstrating that it can work. We also included in the Deficit Reduction Act the Medicaid State plan option

for home- and community-based services.

Now, for people who are handicapped by mental illness, States

have a new option to use Medicaid funds for home- and community-based services without even having to go to the bother of getting a waiver. Iowa is the first State to receive approval of this

benefit. The State plans to serve 3,700 people in the 1st year, and

nearly 4,500 people by the 5th year.

That is, of course, thousands of people who would have been in

institutions. I believe that we are moving in the right direction. We

are working to enable people to stay in their communities, and we

are allowing them greater responsibility and choice in yet another

4

key area of their lives. So, once again, Senator Baucus, I appreciate

your holding this hearing and moving this ball forward.

The CHAIRMAN. All right. Thank you, Senator.

I would like, now, to welcome our good friend and colleague, Senator Harkin.

Senator SCHUMER. Mr. Chairman?

The CHAIRMAN. Senator Schumer?

Senator SCHUMER. Mr. Chairman, I know that it is not usual for

non-chairman and ranking members to make an opening statement. I would like to just briefly welcome, if I might, Mr. Chairman, the more than 50 constituents who got on a bus yesterday

from Rochester, NY. [Applause.] They are from the Center for Disability Rights and the Regional Center for Independent Living. And

the reason I am a proud co-sponsor and fighter for this bill is these

people alerted me to the real need. So, thank you for being here.

The CHAIRMAN. Thank you, Senator, very much. [Applause.]

Thank you.

I now welcome Senator Harkin, who is chairman of the Labor,

HHS Subcommittee of the Senate Appropriations Committee, and

also chairman of the Agriculture Committee, and quite a remarkable man in many ways. I very much welcome you, Senator. Again,

thank you very much for your strong work in the Community

Choice Act.

You have been a real leader. In fact, I cannot think of another

member of this Senate who is anywhere close to you in the work

that you have undertaken in this area, and many others, and we

thank you very much for having the opportunity to listen to your

statement. Thank you.

STATEMENT OF HON. TOM HARKIN,

A U.S. SENATOR FROM IOWA

Senator HARKIN. Mr. Chairman, thank you for those kind words.

And thank you for your leadership, and Senator Grassley, both, in

moving this ball down the field over the last few years. We have

made some progress. I think what we are talking about here today

is finally getting to the goal line.

I want to thank all of the CCA activists who are out here in back

of me coming from different parts of the country—obviously more

from New York than anywhere else. [Cheering.]

I want to thank NCIL, the National Council on Independent Living, ADAPT and their leader, Bob Kafka, who was going to be here

but was in the hospital, and is now out, and others for their very

long and persistent struggle for fairness, equity, and opportunity.

Mr. Chairman, it was 17 years ago this summer that the Americans With Disabilities Act was signed into law by President Bush.

There were four goals set out in that bill, enunciated very clearly:

equal opportunity, full participation, independent living, and economic self-sufficiency.

At the time when this passed the Senate and the President

signed it later into law in 1990, I said at the time on the floor,

since I was the chief sponsor of that bill, that this opens the door,

but the next, most important thing we have to do is provide personal attendant services to people. I said that in 1990.

5

So it has been 17 years since ADA and since we started this

push. It has been over 10 years since MiCASSA (the Medicaid

Community Attendant Support and Services Act) was first introduced. Now, MiCASSA was a precursor of this bill. I might just

add, for those who maybe do not follow this or maybe came later,

it was first introduced in the House by none other than Newt Gingrich himself, who was then Speaker of the House. He is still a supporter of this, I might add, of the Community Choice Act.

So, really, Mr. Chairman, you outlined, I think, very succinctly,

very clearly, very eloquently in your opening statement, what this

is about. It is about giving people choice about where they want

their Medicaid dollars to be spent. That is really all it is about. As

you will see on the shirts, what people have been saying for years,

‘‘Our Homes, Not the Nursing Homes.’’ Let us decide where that

money should be spent.

Right now, and as you are all aware—I am just repeating things

I am sure you know—there is this bias in Medicaid. Two-thirds of

the money in Medicaid goes to nursing homes, one-third goes to

communities and home-based care. That is because, under Medicaid, they shall, they have to, they must provide the funding for

that. But under community- and home-based, they may. That is the

difference.

Now, also, I might just point out that a lot of States have waivers. Most States have some kind of a waiver program, and some

States do it better than others. I think Iowa does a pretty good job

of waivers; obviously Montana has a good waiver program. I am

not familiar with all the waiver programs, but it is a hodgepodge

of different things around the country, some States better than others.

But even with a State that has a good waiver program, you have

almost a web of entanglement of things that people have to go

through to try to figure out if they can qualify. Now, you take Iowa,

for example. Mr. Concannon can speak about this. If you get in the

physical disability waiver program, you have a $500 a month cap.

Well, then you have to think about, well, maybe I need more than

that. I cannot get all the attendant services I need so I can get up

and go to work every day.

Well, but there is a cap there. So then you apply to another program, you try to get in under another waiver, under the Ill and

Handicapped program. Well, maybe you can get into that. Well, but

that has a year’s waiting list. Well, maybe there is another program. So what happens in these States with waivers, when someone enters the system, they apply for every waiver. Then it kind

of becomes a bureaucratic entanglement. Again, it should not be

that way, that people have to go through that.

So when you apply for a waiver program, a person with disabilities hopes they are eligible. They hope they meet the eligibility requirements. Second, they hope that there is space for them in that

waiver. Third, you hope that it is not capped so that you might get

2 or 3 weeks of service, but not the last week.

So with all due regard to waivers, it is time now to move beyond

that. The ball has been moved down the field. The time has come

to move beyond that and to have broad-based community-based

services to lift that bias in the Medicaid program.

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With appropriate community-based services, we literally can

transform the lives of people with disabilities. They can live with

their families and friends. They can be the neighbors down the

street, not someone warehoused down the hall with strangers

whom they do not know.

Now, I would just close with a story about my nephew, Kelly, to

give you an idea of the differences. My nephew Kelly was injured

27 years ago. He was a young man of 19. He got injured and became a quadriplegic. Well, he wanted to go to college, so he went

and he got good service. He went to college and he got his degree.

He then became independent and he has lived in his own home

ever since. He got the use of his arms back and he can actually

drive a van with a lift. He gets in the van and he goes to work

every day.

A nurse comes in every morning. Every morning, a nurse comes

in, gets him out of bed, does his exercises, does the other things

he needs, drains him, all that kind of stuff, gets him ready to go

to work. Kelly gets in his van and he goes to work. He comes home,

he makes his own meals. He invites friends over to his house. Then

he has someone who comes in and helps him get ready for bed. The

next morning, he gets up, the nurse comes in and gets him ready

to go, and he goes to work. He pays taxes. He is a contributing

member of society.

Now, how does he afford to do all this? Is his family rich? No.

His mother, my sister, died many years ago. A family of very modest means. His dad is now 88 years old. They do not have any

money. How does Kelly afford to do all this? He got injured in the

military. The VA picks it up. The VA picks up everything, gives

him the opportunity to go to school, to live independently, to have

his own life, to get a job and pay taxes.

If Kelly, at age 19—I say to my friends, if he had gotten injured

in a car wreck, he would never have been able to live the life that

he has lived. He would not have those services available to him.

That is the difference. He had his choices simply because he was

injured in the military.

I say it is now time to give every disabled person in this country

the things that Kelly had, the kind of choices to make, the freedom

to live their own lives, not warehoused in a nursing home. That is

why this is so timely. This is so timely. We have been waiting a

long time, as I said, 17 years; 10 years since it was first introduced,

8 years since the Supreme Court said in the Olmstead decision that

the State had to provide the least restrictive environment under

the Americans With Disabilities Act.

So now it is time for us to take that final step and to at least

provide that those who are on Medicaid, they get the choice to do

what they want to do. It really is, as you said, Mr. Chairman, what

that Freedom Bell says. It is time. It is time to do it. It is past time

to do it. It is time to look ahead, as you said, Senator Grassley. It

is time to look ahead and get the Community Choice Act through

and give people the freedom that they deserve. Thank you, Mr.

Chairman. [Applause.]

The CHAIRMAN. Thank you, Senator, very much.

Do Senators have any comments? Thank you, Senator. You have

been a real leader here. We deeply appreciate it.

7

I see Senator Wyden wishes to be recognized.

Senator WYDEN. Mr. Chairman, thank you. I want to congratulate our colleague. It seems to me that this cause is very straightforward. This is an opportunity to give vulnerable Americans more

of what they want, which is to stay at home at a cheaper price

than the alternative, which is institutional care. That is what this

is all about. I want to congratulate you on your effort.

The proposal that you have offered is very much consistent with

what Senator Bennett and I are offering in our Universal Coverage

Plan, and I want to commit to you and to all the folks who have

journeyed far and wide, we are going to fight to make sure that

your just cause is part of any universal coverage proposal that gets

through the U.S. Congress, and I congratulate you. [Applause.]

The CHAIRMAN. Thank you, Senator. Thank you very, very much.

Thank you, again, very much for your contributions.

Senator HARKIN. Thank you, Mr. Chairman.

The CHAIRMAN. You are a real leader, and many people deeply

appreciate it.

Senator HARKIN. Thank you very much, Mr. Chairman.

The CHAIRMAN. Thank you.

The next panel. Our first witness is Bob Liston. Bob is director

of Montana Fair Housing, and he will provide the committee with

his experiences both as a person with a disability and as an advocate for home- and community-based services. Bob, welcome to the

committee. Next, Mitchell LaPlante. He is an associate professor at

the Institute of Health and Aging at the University of California,

San Francisco. He will discuss his research on the cost estimates

of home- and community-based services. Then we will hear from

Patrick Flood, director of Vermont’s Agency of Human Services,

and then Kevin Concannon, director of Iowa’s Department of

Human Services. He will describe their State’s challenges and successes in expanding home- and community-based services.

Thank you all for coming. I would remind you all that your written statements will automatically be included in the record, and I

urge you to confine your oral statements to 5 minutes. All right.

Mr. Liston?

STATEMENT OF BOB LISTON, DIRECTOR,

MONTANA FAIR HOUSING, MISSOULA, MT

Mr. LISTON. Thank you, Chairman Baucus, Ranking Member

Grassley, and members of the Senate Finance Committee. Thank

you for the opportunity to testify today on assuring that home- and

community-based care is at least an equal option as we move forward to reform our broken long-term care system.

My name is Bob Liston, and I am proud to be a person with a

disability and proud to be from Montana, the last best place. I am

testifying today as an individual who has lived with a disability for

37 years and am part of the disability community that is 17 percent of the Nation’s population.

I am also testifying as one of the legion of baby boomers beginning to knock on the doors of the Nation’s public and private longterm care systems. I will tell you that, in all my 53 years on this

planet, I have never met anyone of any age or any disability who

8

said they want to live in a nursing home, an ICF/MR (Intermediate

Care Facility for the Mentally Retarded), or any kind of institution.

Finally, I am also testifying as a professional who has worked

and volunteered over the course of a lifetime to assist people with

even the most significant disabilities to move out of nursing homes

and other institutional settings and to live in their own homes, in

their own communities with the necessary services and supports.

I am not an academic, a researcher, or a bureaucrat. I have been

in the trenches, partly for selfish reasons: I do not want to go to

a nursing home. So, I have worked to figure out the best ways for

people to stay in the community. I want to guarantee a level playing field so I have a choice to live where I want, and from whom

I purchase my long-term care services.

While assisting others, I have learned more than I could ever

imagine about supporting people to live in the community. I can

say with complete confidence that I know what is possible. When

I was an invulnerable 16-year-old high school student athlete, I

rolled a pick-up down a mountain on the outskirts of Helena.

Montana being a rural and frontier State, trauma centers were

few and far between. I was taken to a hospital in Great Falls, nearly 2 hours away, though my mother insists it was about a 15-

minute drive. After spending 3 months there immobilized in a

Stryker frame, the doctor came into the room on the last day, casually telling me, oh, by the way, you’ll never walk again, and then

signed the order sending me to a nursing home.

Once there, it took me about 30 seconds to realize, this is where

people come to die. During the 4 months I spent there, they were

dying all around me. In fact, two boys with Duchenne muscular

dystrophy, who were younger than I was, were admitted to the

nursing home. The staff told me I should not be depressed about

my disability, because at least I would be leaving. They were there

to die.

I know firsthand what it is like to be sent to a nursing home,

so I am sure you will not be surprised when I tell you that I would

rather die than ever go back to a nursing home again. In many

ways, I represent every man and every woman in this country. I

am not a man of means; I work full-time and then some for a

small, nonprofit organization that exists to ensure that no Montanan experiences discrimination in housing.

I work very hard, but my organization runs on a shoestring, a

shoestring that does not include health insurance, retirement, or a

long-term care program. My wife and I save for our eventual retirement, but it is unlikely that we will be able to cover all of our longterm care costs out of our own pockets, no matter how much we

scrimp and save now.

I have been surprised to learn that Medicare does not cover any

ongoing community-based long-term care services. That means it is

very highly likely that at some point we will be reaching out to

Medicaid-funded long-term care services. This is the situation of

many aging baby boomers.

Right now, according to CMS, about 70 percent of Medicaid longterm care dollars go to nursing homes and other institutional settings, and just over 30 percent go to home- and community-based

services. This ratio has been gravely concerning for my own future,

9

because it means I do not even have a 50/50 chance of being able

to choose to stay in my own home as I age and become increasingly

disabled.

The institutional bias in the Nation’s Medicaid program gives me

2-to-1 odds of being forced into a nursing home. The Community

Choice Act would help level the playing field and give me real

choice. This institutional bias also means that a creative State like

Montana does not have the flexibility it needs and deserves to

stretch precious Federal and State dollars in a way that is most efficient, cost-effective, and in keeping with the needs and desires of

its citizens.

Montana is the fourth-largest State in geography, with one of the

smallest populations in the country. In a rural, frontier, and tribal

State like ours, or a number of other States, offering people only

the choice of a distant institutional setting is cruel to the individual and cruel to the families and friends.

Real choice, as provided in the Community Choice Act, would not

only serve us better and more cost-effectively overall, but it would

give the State the tools it needs to be good stewards of public

money, while being responsive to its citizens.

While I was on the Montana Statewide Independent Living

Council, one of my colleagues who lived on the Fort Peck Indian

reservation had a sister who needed extensive support. When his

sister got to the point where the family could no longer provide all

of the support she needed, she was placed in a nursing home 5

hours away.

This was the closest nursing home that said that they could provide the services that she needed and had an open bed. This is also

a place where many folks have been sent when they age out of

State developmental disability and mental health facilities.

This facility was closed about 4 years ago for extensive abuse and

neglect of persons living there. Needless to say, this was an incredible blow to my colleague and his family. They felt they had abandoned their loved one, violating not only family values, but also Native American traditional and cultural values.

This scenario is a frequent one in rural, frontier, and tribal

States. People are placed far away from loved ones. Mr. Chairman,

you have already expressed one of my stories about a good friend

of ours, Mark, who moved from North Dakota to escape a nursing

home. It is a pleasure to say that he has just started attending the

University of Montana and, hopefully in a few years, will be earning a good living in journalism, writing about disability rights and

the movement as we go forward.

The CHAIRMAN. Bob, I see you have a lot of pages left in your

hand.

Mr. LISTON. Not really. Not really.

The CHAIRMAN. If you could figure out how you are going to summarize, that would be very helpful.

Mr. LISTON. All right. I hope you will read about some of the

other scenarios in the written testimony that I have submitted, and

also watch the DVD that I submitted to all of the members.

The CHAIRMAN. We have it here. Right.

Mr. LISTON. The DVD is a summary of testimony that was taken

in Nashville a little over a year ago.

10

I have had the opportunity to assist people with some of the most

significant disabilities to live and thrive in the community after

long stays in various institutional settings. The Community Choice

Act will allow people to stay in their homes while they pursue the

lives they choose.

I cannot tell you the number of people across the country who

have had to move from their home States to another State just to

receive community-based services. If they had not moved out of

State, they would have been forced into a nursing home or institution. This is wrong.

People with disabilities, whether newborn or grandparents, deserve a level playing field that does not enforce only one solution

for people, but instead lets us have a choice personally and lets our

States have the flexibility to make responsible decisions that make

the best use of public dollars.

The Community Choice Act does not create a new, unfunded

mandate. We already pay for this assistance when people are

forced into nursing homes and other institutions by the Medicaid

institutional bias. The Community Choice Act simply makes the existing mandate more responsive to consumers, and in the aggregate

will prove to be a more cost-effective use of public dollars. It does

not make more people eligible. It does not force the closure of nursing homes or institutions, it simply means that people who are

eligible——

The CHAIRMAN. I am really going to have to ask you to summarize if you could, Bob.

Mr. LISTON. All right. I urge you to pass S. 799 out of committee

and to the full Senate. The disability community has been waiting

for over 15 years, and over that time so many of us have become

seniors with disabilities, still waiting for community choice.

In closing, I would like to thank Senators Schumer and Salazar

for their co-sponsorship of the Community Choice Act, and I encourage all of you to look at the attachments, as I have already

mentioned. Thank you again for this opportunity to testify. I would

be happy to answer any questions that you have.

The CHAIRMAN. Thank you, Bob, very, very much. I appreciate

that very much. Thank you. [Applause.]

[The prepared statement of Mr. Liston appears in the appendix.]

The CHAIRMAN. Mr. LaPlante?

STATEMENT OF MITCHELL LaPLANTE, ASSOCIATE PROFESSOR, DEPARTMENT OF SOCIAL AND BEHAVIORAL SCIENCES,

UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, CA

Mr. LAPLANTE. Chairman Baucus, Senator Grassley, members of

the Senate Finance Committee, I am honored to speak today on expanding the options low-income people with disabilities have to

choose between living in an institution and living in the community.

In our Nation’s history, deinstitutionalization occurred first for

persons with mental illness in the 1960s. As a result of the Medicaid waiver program, a second wave of deinstitutionalization occurred in the 1990s for persons with intellectual and developmental

disabilities.

11

We appear to be entering a third wave of deinstitutionalization

in which persons with physical disabilities and older persons can

remain in the community instead of going to a nursing home or

similar facility. As our population ages, we must find ways to provide home- and community-based services of sufficient quantity

and quality so that individuals can choose where and how they

want to live.

The Congress, the administration, and the Supreme Court all

agree, people should be able to choose where and how they live. As

we have heard, Medicaid, in its design, rules, and procedures favors placement in institutions over home- and community-based

services, what we call the ‘‘institutional bias.’’ The key aspect is

that the institutional services are mandatory, while HCBS is optional. Some States use their options, but many States do not.

The fraction of a State’s population that is provided personal care

services ranges from a low of 3 persons per 10,000 State residents

in the lowest State, to 84 persons in the highest State. That is a

ratio of 28:1.

About 30 States use the personal care services optional benefit,

which funds personal care services and attendants. In States that

do not use the personal care services option, those services are only

available if the State has a waiver that provides personal care. Unlike the personal care services benefit, the waivers are often restricted in who they will serve, and there are long waiting lists, as

we have already heard.

While additional HCBS opportunities can be created through the

Deficit Reduction Act of 2005, which I think is an excellent opportunity, these too are optional. This maintains the significant bias

towards institutions, and individuals are not provided a real choice

in certain places of the United States.

Given the situation, it is not surprising that there is unmet need

for personal assistance among low-income persons. The fraction of

people who need help with two or more activities of daily living

who have unmet need for personal assistant services and are poor

is 31 percent among working ages, actually a little bit higher than

the elderly, which is 25 percent.

Unmet need is important because it is associated with a host of

adverse consequences, such as injuries from falling, poor nutrition

and dehydration, and others, all of which are unnecessary and add

significant cost to the health care system.

The Community Choice Act is a proposal for people with low incomes who have an institutional level of need—not for everybody,

just for those with an institutional level of need—to help them

avoid institutions, allow them to choose community services, and

reduce unmet need.

By making personal care services a mandatory benefit, the

Choice Act would greatly reduce the institutional bias. However,

this idea, this piece of legislation, has had an albatross around its

neck since the idea was first introduced in the Senate.

The Congressional Budget Office estimated in 1997, for an earlier version of this bill, that new Federal expenditures would be

$10 to $20 billion a year if only a quarter of those who could be

eligible obtained the benefit. I have to say, frankly, that estimate

is inflated and erroneous.

12

Based on research I and my colleagues have published, we estimate a range from $1.4 to $3.7 billion, depending on a rate of participation from 30 to 80 percent. Adjusting for inflation, it is about

one-tenth the CBO estimate.

Now, the key difference is the number of people who would be

eligible. Assessment of institutional need is typically based on having two or more of the basic activities of daily living, which include

bathing, dressing, transferring, toileting, and eating. The CBO estimate included people who need help with a much broader set of instrumental activities, including shopping for groceries or getting to

places outside of walking distance.

However—and I think we would all agree—someone who only

needs help shopping for groceries certainly is not a candidate for

an institution. Including these activities greatly inflated the CBO

estimate.

There has been concern over a ‘‘woodwork’’ effect. I think I will

just say that the Community Choice Act will generate some woodwork effect, no doubt, but it will not be a large woodwork effect because it restricts the benefit to people with an institutional level

of need. We estimate 600,000 persons would be eligible, not several

million.

I am concerned that the institutional need criteria should be

more specific. We know some States use loose criteria—in one State

you only need a doctor’s letter to be admitted to a nursing home—

while others use strict criteria, such as needing three or more activities of daily living for determining need. I think institutional

need criteria should be more specific in the CCA, such as needing

help in two or more ADLs, so that this does not become an Achilles

heel for the legislation.

While it is often claimed that HCBS is cheaper, the argument is

rarely made that HCBS costs any more than institutional services.

One study concludes that Medicaid could be saving $44,000 per

person by providing HCBS instead of a nursing home stay.

Our ongoing research at the center where I work, the University

of California, shows that several States that have greatly expanded

their HCBS programs in the 1990s have been able to reduce their

institutional expenditures within 5 years. States that have established HCBS are ahead of the curve in controlling their costs.

States that are reluctant to explore their options are behind the

curve and experiencing increasing costs.

I am aware that States do not like Medicaid mandates, but,

given ample options, many States apparently did not have the

wherewithal to rebalance their long-term care systems. Twenty

States, for example, are not participating in Money Follows the

Person 2 years after the grants were first announced. I will just

mention again the 28:1 ratio fraction of the population getting personal care services by State. It illustrates that some States are

doing much more than others.

It is my professional opinion——

The CHAIRMAN. I am going to have to ask you to——

Mr. LAPLANTE. I am going to wrap up.

The CHAIRMAN. All right. I appreciate it.

Mr. LAPLANTE. Just two sentences left.

13

It is my professional opinion that the CCA is socially and fiscally

responsible legislation. It would replace the safety net that varies

depending on which State a person lives in with one that is more

uniform for persons with significant disabilities, reducing that ratio

from 28:1 to closer to 1:1, and is likely to save money in the long

run, while improving people’s lives. Given that the oldest baby

boomers are 61 years old today, there is not much time left to get

rebalancing done. Until the institutional bias in Medicaid is remedied, choice will remain constrained.

The CHAIRMAN. Thank you, Mr. LaPlante.

[The prepared statement of Mr. LaPlante appears in the appendix.]

The CHAIRMAN. Mr. Flood?

STATEMENT OF PATRICK FLOOD, DEPUTY SECRETARY,

VERMONT AGENCY OF HUMAN SERVICES, WATERBURY, VT

Mr. FLOOD. Good morning.

The CHAIRMAN. Good morning.

Mr. FLOOD. I thank you for the opportunity to come and talk to

you about the State of Vermont today.

I would like to tell you, first, a little bit about myself. I was a

nurse for 7 years. Before that, my first job in health care was as

a nurse’s aide in a nursing home. I subsequently was an advocate

for people in nursing homes, a long-term ombudsman. I then licensed and regulated nursing homes, and I have run home- and

community-based programs for a long time now.

The point is, I have been on the inside and I have been on the

outside. I am here to tell you today that there is, indeed, a better

way to run a long-term care system than what we have today. We

are doing it in Vermont today, and it works.

We have a system in Vermont where people can choose whether

they want to live in a nursing home or get their services at home,

and we have managed to do that in a cost-effective way. It is not

a theory, it is not pie-in-the-sky. In fact, it can be done, and it is

being done in my State today.

The key point here is, not only is this what people want—people

want to stay at home and they prefer home-based alternatives—but

that it is cheaper. Now, how often is this body going to encounter

a public policy question where you can give the people of this country what they want and save money? You do not have too many

opportunities, and this is one of them right before you. The time

has come to implement that nationwide.

You have heard about the institutional bias in Medicaid, and I

want to touch on it for just a minute. Let us examine the way the

current system works today. If you want to go to a nursing home

and you are Medicaid-eligible, you get to go if the bed is open. If

you want to stay at home and get those services, which are cheaper, you have to get in line and you have to wait.

Now, this makes absolutely no sense. Why would we make the

most expensive service that people do not even want the entitlement, while the service people want, which is cheaper, you have to

wait in line for and it is capped across the country? It makes absolutely no sense, yet that is the system we have today.

14

Some people argue that home-based care is not cheaper. I just

want to tell you very quickly, in my State we got tired of hearing

this, and in 2002 we did a comprehensive study where we looked

at not just the costs in the nursing homes or the costs for the

home-based services, we looked at the cost for everybody, all the

Medicaid costs for the people in these systems, their doctors’ costs,

their transportation costs, their hospital costs, their medication

costs.

We added them all up and we compared them. When all was said

and done, the costs for keeping an elderly person, on average, in

their own home was two-thirds the cost of being in a nursing home.

We have a very generous program, a very generous home- and community-based program in Vermont—two-thirds the cost. The cost

for a younger disabled person was about the same. So as far as I

am concerned, that question has been answered a long time ago.

It is, in fact, on average, cheaper to keep people in their own homes

or in alternative settings.

So if for no other reason than economics, it made sense for us

to move in this direction. But I would remind you, of course, that

it is absolutely the right thing to do for elders and people with disabilities as well.

We made a lot of progress over the years in reducing our reliance

on nursing homes and increasing our home- and community-based

services, but we kept running up against this institutional bias. We

had people waiting on the waiting list. At some point they cannot

wait any longer and they go in the nursing home, and they cost us

more money. It really made no sense.

So we asked the Federal Government for what is called an 1115

waiver. I will not go into explaining what that all means, but it

gave us a lot of flexibility to redesign our Medicaid system.

In our system, we created equal access to either a nursing home

or home-based service, and we did it in the context of a manageable budget. All I am going to say about that is, in simple terms,

what it lets us do is create a waiting list if we have to. We appropriate a certain amount of money. If we need to, we can put people

on the waiting list.

The people who would go on the waiting list are the lighter care

people, not the people who have heavy needs. We serve them first.

But the more important point about a waiting list is that there has

always been a waiting list. There is a waiting list in every State

in this country right now for people for home- and communitybased services. That is not fair. There is no waiting list for nursing

homes. If there is going to be a waiting list, it should be equalized

so that it is either for people waiting for nursing homes or for

home-based services.

Frankly, we do not have a waiting list today in our program because we have been able to reduce nursing home utilization by

enough that, if you take that money and you put it on the homeand community-based side, in effect you can serve twice as many

people for the same amount of money. So you do not end up with

much of a waiting list because you can, in fact, deal with the socalled ‘‘woodwork effect’’ that Mr. LaPlante mentioned. People do

not come out of the woodwork that you do not know anything

about. You can manage the system. It is achievable.

15

The numbers in Vermont—I always have to apologize for this,

because we are a small State, so you might want to add a zero or

two to whatever I say. But I think the Senator from Montana

would appreciate the small numbers.

In the 2 years since this program started in October of 2005, we

have added nearly 500 people to our home- and community-based

waiver system. That is twice as many as we could have otherwise,

and that is a critical point: twice as many as we ever could have

in the old system. So, in fact, it does work. Our nursing home utilization is down, our home- and community-based services are way

up. So, the service has basically worked exactly as we designed it.

I am just going to touch on this very briefly and tell you that any

home- and community-based system has to have a portfolio of services. It has to have a lot of options, because everybody’s needs are

different and you have to be flexible to meet those needs.

I would also say, we need to emphasize consumer direction, because consumers know better than any agency or any bureaucrat

what they need for services. Those things are both emerging in our

systems across the country. I would also say that there is a lot of

worry all the time about, what is going to happen to the nursing

homes?

First of all, we are not going to need these nursing homes in 15

or 20 years when the baby boomers are coming on because the

baby boomers are not going to move into nursing homes, number

one. Number two, in 15 to 20 years when baby boomers need that

care, those nursing homes are going to be obsolete. So what we do

need is alternatives that the baby boomers, in fact, will use and

will support.

So what I would like to say is that, in fact, any State can do

what we have done, except for Federal law. The Federal law prohibits States from taking the steps that Vermont has taken in creating equal access because of the nursing home bias, and we need

to change that. Congress has to find a way to give States permission to equalize access to either home-based care or nursing home

care, and I think that the bill that you have before you may very

well be that vehicle.

The CHAIRMAN. Thank you, Mr. Flood.

Mr. FLOOD. Can I make one final comment, Senator?

The CHAIRMAN. Briefly. You care very passionately, and I really

appreciate that. But I must say, your panel is having a little harder time limiting itself to the 5-minute rule. That is fine. That is

great. There is not many more.

Mr. FLOOD. I only need 35 seconds here.

The CHAIRMAN. You got it. Thirty-five.

Mr. FLOOD. It is almost 11 o’clock here in Washington. That

means it is 10 o’clock in Iowa, and it is 9 o’clock in Montana.

The CHAIRMAN. Right.

Mr. FLOOD. Right now, there is a family having to take their

mother or their son to a nursing home to live because there is no

alternative. It is high time that that is stopped. That is happening

all over this country, and it is not necessary. There is a better way,

and the State of Vermont stands ready to help Congress, CMS, or

any other State design and develop a system that truly does serve

people. [Applause.]

16

The CHAIRMAN. Thank you very much.

[The prepared statement of Mr. Flood appears in the appendix.]

The CHAIRMAN. Mr. Concannon?

STATEMENT OF KEVIN CONCANNON, DIRECTOR,

IOWA DEPARTMENT OF HUMAN SERVICES, DES MOINES, IA

Mr. CONCANNON. Good morning, Senator Baucus, Ranking Member Grassley, and members of the Finance Committee. I very much

appreciate the opportunity to meet with you today. We are very fortunate in the State of Iowa to have Senator Grassley and Senator

Harkin, whom you heard from earlier this morning. But I also note

on this committee today, and personally, Senators that I have had

the privilege to work with in the past, Senator Snowe in the State

of Maine, Senator Wyden in Oregon, and Senator Smith in Oregon.

So, in some respects I feel like an alumni association here today.

These are three States actually that I think are notable in terms

of their efforts to provide alternatives to institutional care for their

populations. I appreciate having the opportunity to comment today

on some of the efforts under way in Iowa to divert people from institutional care.

First of all, I should mention that the Department of Human

Services in Iowa has a variety of responsibilities, not uncommon to

other States with such organizations. But importantly, the Medicaid program is by far, I think, the most important and far-reaching of all of our responsibilities.

Iowa has been steadily moving, going back to 1984, its first

home-based care waiver, into availing itself of options to divert people from institutional care. We currently have about 23,000 persons

enrolled in HCBS waivers compared to 13,000 Medicaid residents

in nursing homes, or ICF/MRs in our State.

HCBS programs have grown, both in terms of their reach and

importance. Now they are growing, both in terms of numbers of

persons, but also in terms of the percentage of the Medicaid budget. It has moved from $176 million in 2003 to $348 million in 2007.

But I also want to note that, as I think we have heard in the

testimony starting with Senator Harkin this morning, and with the

chair and the ranking member, what has changed, I think, in

terms of policy over time in our country for both frail, elderly persons and people with disabilities, are the values, the recognition of

the values of autonomy of choice, of being able to live and remain

in one’s own community. Gradually—certainly not fast enough for

anybody, but gradually—the public financing programs are being

tailored to support that. I am going to speak to that in a few minutes.

I have asked the staff to hand out a brochure—I hope members

have it here—that describes the various Iowa programs, both the

seven HCBS waivers that we have, but importantly, on the back,

the last page of that, it describes the consumer choice option. I

think that responds to many of the concerns that people have noted

here today.

Innovative approaches are certainly part of the effort we are

making in our own State to say, what else can we do for, again,

assisting and accommodating the needs of people who are frail, elderly, or people with disabilities? We have introduced something

17

called Consumer Choices, which in some States is referred to as

Cash and Counseling. I avoid using that term in my State because

I do not want people to misunderstand really what it is intended

to be.

But the Consumer Choices, we have gradually introduced this

over the past year. It is now available State-wide. We are now one

of approximately 18 States that have this option. It is a Medicaid

waiver. Within that waiver, individuals are allowed to purchase the

services directly. They may hire the person providing that care.

They may hire the agency directly. It speaks to, I think, a very

basic American value: he or she who pays, people pay attention to

the source of that pay.

When individual persons who are eligible for any one of our

waivers, excluding the Children’s Mental Health Waiver, they are

allowed to, in effect, have the dollar resources that we would typically spend for them, including if they were to be admitted into a

nursing home, deposited. In Iowa’s case, we have the State’s largest credit union, I am happy to say, serving as the fiscal agent.

That is part of their social mission, as well as being a very responsible banking institution.

We have caseworkers who work with them who are so-called support brokers. But what is notable in this program, I think, that one

often hears in terms of concern, it provides the opportunity for people to pay family members and it also lends itself to rural areas

where there may be workforce shortages, and we have certainly experienced that in some of our rural counties. So, we are very excited about the Consumer Choices option.

A second area of implementation that I wanted to bring to this

committee’s attention—I realize you have a responsibility as well

for child welfare programs—is our Children’s Mental Health waiver. In nearly half of the States in this country, for a child with a

serious continuing mental health need, if that family is not poor

enough to be on Medicaid or possibly the SCHIP program, or rich

enough to have the resources to be able to provide for that care,

in order for public health to come to that child over time, custody

relinquishment must occur. They must relinquish the custody of

the child in the court system, something in our State we call a

CINA (Child in Need of Assistance) program; some States call it

CHINS (Child in Need of Services).

To me, about half the States in the country still require that. We

sought a waiver 2 years ago. I am happy to say we changed our

State law. The courts are very happy with this, families are very

happy with this. We are diverting children from residential care.

We are helping children with serious mental health issues, providing them better, more tailored care in their own families.

A third area I wanted to mention is the Money Follows the Person. I think that was referenced in Senator Grassley’s testimony.

We are a State that has the fifth or sixth highest rate of ICF/MR,

Intermediate Care Facilities for People with Mental Retardation.

We received a 5-year grant within the last year. We had determined to provide better alternatives to individuals, in keeping with

the Olmstead decision, again, previously cited here today. I think

that is a very important opportunity for us.

18

Finally, I wanted to mention the Deficit Reduction Act opportunities. We, like many States, had previously in our Medicaid program

something called Adult Rehabilitation Option. Unfortunately, that

option was adopted by our State in 2001, acting in good faith, and

provided a lot of needed services to people with disabilities, but it

was one of the first such programs audited by the OIG, and Iowa

ended up repaying the Federal Government about $6 million because a number of those services really did not adequately fit the

rehabilitation standard, so to speak.

Now, the Deficit Reduction Act has provided an opportunity for

us in a particular section to create basically what we are referring

to as ‘‘habilitation,’’ a functional need for many of the people in our

population. In Iowa’s case, the principal beneficiaries of that, about

3,700 this first year, are people with chronic or persistent mental

illness.

The committee may be well aware of the fact that within Medicaid programs there are many more options for people with mental

retardation, principally because, going back to the 1970s, of the introduction of something called Intermediate Care Facilities for people with Mental Retardation. That, and the waivers or the options

for those kind of services.

We do a better job in this country for people with mental retardation. We do not do nearly as well for people with chronic mental

illness. The Deficit Reduction Act, cited by Senator Grassley in his

comments, created a section that allows us to really provide much

better habilitation and services to that population in our State.

Finally, I wanted to note the efforts we have been making, in cooperation with CMS, to ensure the quality of care in our homebased care programs. I would admit that in the early years, I do

not think there was sufficient attention paid in our State to making sure that quality was provided in the alternative programs. I

think people were happy to have alternatives, and it was a faithbased initiative, by intent or not.

We pay much more attention now to the quality issues that are

faced by people. We are happy to have the alternatives. We are

pleased with the general direction of providing alternatives, as has

been cited by virtually everybody here today. People would much

prefer to have a safe, quality alternative than to be required to be

institutionalized.

Thank you.

The CHAIRMAN. Thank you, Mr. Concannon, very much.

[The prepared statement of Mr. Concannon appears in the appendix.]

The CHAIRMAN. Senator Grassley?

Senator GRASSLEY. I thank the Chairman for letting me go first.

Mr. Concannon, how many people would you expect to join the

option, the Consumer Choices option, that we have already referred

to? Is there an optimal number of enrollees that you would want

to have?

Mr. CONCANNON. Senator, the experience in States that have had

this option—Arkansas is one of the first. There were three States

that have provided this option now for about 8 years, as I understand it. Typically, in the States that provide the option, someVerDate 11-MAY-2000 15:09 Jun 03, 2009 Jkt 000000 PO 00000 Frm 00026 Fmt 6633 Sfmt 6633 48861.000 SFIN1 PsN: SFIN1
19

where between 15 and 18 percent of the Medicaid-eligible population opts to take that.

Now, to me, the important aspect of that is, that is an option

that is given to people. But it is also, I think, happily, a competitive element that is introduced into the service system, because the

existing agencies that provide these services, knowing that, if I do

not respond to you and your need, you will have some different

choices, versus the sort of franchise.

I hate to overstate that, but the notion is that there is one local

agency and you have to live with it, good, bad, or indifferent. So

our current estimate in Iowa is that within several years we would

expect to be, based on our current waiver population, somewhere

in the 3,000-person range.

Now, again, those States—Arkansas cited that it was particularly useful in obtaining a health care workforce for individuals in

rural areas. We have examples in Iowa where we have dollars set

aside for home care, but we do not have sufficient providers. I am

anxious to see what impact this may have in that regard.

Senator GRASSLEY. All right.

And for you and Mr. Flood, a second question. Many times when

people think about home- and community-based care, they think

about it in areas with concentrated populations. Yet, your two

States are rural, and you have strong home- and community-based

programs. Have you faced barriers unique to rural States in implementing programs to encourage home- and community-based care?

Mr. CONCANNON. Yes, we have. I mean, we have had current examples of some of our smaller rural counties where they do not

have the concentration of health agencies or home nursing agencies. As an example, one of the steps that Iowa has taken, the legislature last year passed laws to make it easier for existing nursing

facilities to also provide home-based care. We think there are two

aspects to that.

One, it can help those facilities be less dependent on just inpatient care, analogous to hospitals. Many hospitals have really developed their outpatient capacity in recent years. Second, we think

they have a workforce that is already stationed there, and that this

may be a way of responding to some of the rural needs.

Senator GRASSLEY. What is your experience in Vermont?

Mr. FLOOD. There are a number of issues related to being a rural

State. I will just hit on some key ones, quickly. The consumerdirected option that Mr. Concannon was referring to is critically

important when you are a small State, because you cannot rely on

agencies of nurses, like home health agencies, to provide all the

services, because they tend to be in the cities or the big towns. By

allowing people to hire their friends, their neighbors, their family

members, you expand the pool of caregivers tremendously.

So you have people who will never go to work for an agency, but

they might go to work for you for 4 hours a week, or twice a week,

or something like that. So a consumer direction really expands the

ability for us to deal with these issues in small States. I also think

that, instead of having 150-bed nursing homes, we can find affordable assisted living facilities that you can have in smaller communities of 30, 40, or 50 people that are much more home-like and

20

much preferable to a big nursing home, and they can fit in some

of your smaller communities. That is another option.

One of the biggest challenges is transportation, because, when

you do expand home- and community-based services, you do want

to get people out of their homes into, say, for example, adult day

centers. That is a challenge. I think we are doing a pretty good job

in Vermont, but it is a constant struggle.

Senator GRASSLEY. Mr. Concannon, does a shift to—well, these

questions are about the quality of nursing home care and whether

it is going to be affected. Does a shift to home- and communitybased care affect the quality of care in nursing homes? Since you

have implemented this, what is the experience in Iowa? How are

you ensuring that we get the quality of care that we want in homeand community-based settings?

Mr. CONCANNON. Senator, to date, as you may know, the Department of Inspections and Appeals works directly with us in the

State of Iowa to oversee quality of care in facilities, but we regularly consult with them. I am mindful of, happily, a rare issue, a

failing nursing home over on the eastern side of the State that we

are working directly with, and have been the last several weeks.

But I might say, as I mentioned earlier in passing, the regimen

for nursing home care has been much more heavily, if you will, regulated and sort of understood over a period of years. I think for

home care, again, there was such a welcoming to this alternative,

that in the early years, at least, I do not believe we paid sufficient

attention to assuring quality.

We have been working very closely with the CMS office, in our

case, out of Kansas City. We are very focused. We pay attention to

incidents. For example, we have a meeting each Monday morning

in our Medicaid program in which they review any incidents that

have come to our attention across the State in home care. The purpose of that is not only to pursue that, but to ascertain whether

there is a systemic issue here in terms of quality of care.

We do consumer surveys. As has been noted again here today,

it is most important in this. You will learn much by talking to the

people who are the beneficiaries of this care. We also want to make

sure that people are receiving an adequate amount of care. Again,

I am mindful of a current situation involving a number of children

with disabilities who are not receiving a sufficient number of hours

of care from the two organizations that were charged with providing that. So, we track those issues by talking to consumers,

interviewing them, auditing records, convening incident report

groups weekly.

Senator GRASSLEY. Thank you all very much.

The CHAIRMAN. Yes. Thank you, Senator.

A key question here is cost. Mr. LaPlante, you addressed it, in

saying that your estimates are that the cost of the Community

Choice Act will actually be about one-tenth the CBO estimate. That

gets to other questions, like, what kinds of services would the community, the more rural communities, provide? Are those institutional? Would that be for a person who would otherwise qualify for

an institution, or not?

Could you tell me, Mr. LaPlante, again, how you arrive at your

one-tenth of CBO and whether you have had any discussions with

21

CBO, and what some of the misunderstandings might be? If we are

going to proceed here, to some degree it is going to depend upon

the cost here, partly because Congress is now operating under, as

you know, pay-go principles. If we spend more money, we have to

pay for it somehow. If we get the bill down a little bit, that would

help.

Mr. LAPLANTE. Well, I think the issue is simply how many people would be eligible for this benefit and what the average cost of

the benefit would be per person. That is essentially how our estimate is derived. In fact, there is——

The CHAIRMAN. What is the difference, though, between you and

CBO?

Mr. LAPLANTE. Well, the difference is how many people would be

served. I think someone lost sight of the fact that the Community

Choice Act would apply to people who have an institutional level

of need. I am not sure if you are familiar with the CBO estimate,

but it was transmitted in a letter to then-Speaker of the House

Newt Gingrich. It was quite clear that the perception was that the

Choice Act would be an expensive piece of legislation, and it is

framed that way.

The CHAIRMAN. Do you know of a request for re-estimate lately?

Do you know?

Mr. LAPLANTE. Well, I think there ought to be a request. I think

this preceding and window of opportunity around the Choice Act,

I would hope, would precipitate a new request from CBO. That is

just how much money would be spent on people. I think, from the

idea of savings, as Mr. Flood and Mr. Concannon have pointed out,

those should be considered too because, quite frankly, if you can

save potentially $44,000 by avoiding a nursing home stay for someone by providing them $11,000 or something like that for homeand community-based services, you can provide home- and community-based services to five people who would not go into a nursing

home by diverting one person from a nursing home. I think Mr.

Flood said it was sort of 2:1. So, there is great potential for savings.

My point is, the expenditures are not as high as CBO said they

would be. If you include the savings, I think you could meet your

pay-go requirement.

The CHAIRMAN. Mr. Flood, do you want to respond to that?

Mr. FLOOD. Well, I would, because I think there is plenty of

money in the system today. We are missing the point if we are just

looking at what these services would cost. Now, I have not done a

detailed analysis of the bill before you, but as has just been stated

and is my experience, you save money when you keep people out

of nursing homes. That money gets reinvested, and you can serve

a lot more people. I have already said that.

I think there are other methods, though, that the Senate and the

Congress can take, in my opinion, to try to control the costs. In our

State, as I say, we come up with a budget, we live within the budget. There is a lot of money there if you divert people from nursing

homes. I think just giving States permission to do what we have

done would empower States to do almost everything that is in this

bill. It does not have to be any more complicated than that.

The CHAIRMAN. You do that primarily through a waiver?

Mr. FLOOD. We have a waiver.

22

The CHAIRMAN. Is that the primary tool that the government can

give to help Vermont set up the program that it wants?

Mr. FLOOD. Yes. We got what is called an 1115 waiver. It is a

very broad, flexible waiver. What I understand is, CMS is not going

to offer that opportunity to other States right now. I do not know

why. But as I said, you should not need a waiver, basically. You

should not need a waiver to stay in your own home, if you stop and

think about it.

The CHAIRMAN. Right.

You made an interesting statement, if I heard you correctly, that

you thought in the future there may be no more nursing homes,

at least not very many.

Mr. FLOOD. Well, I am a pragmatist. I have been in this system

a long time. I know that we are not going to do away with every

nursing home in this country any time very soon.

The CHAIRMAN. Should we?

Mr. FLOOD. What?

The CHAIRMAN. Should we?

Mr. FLOOD. Well, frankly, I think that the institutional—I have

worked in nursing homes. I do not think we should have nursing

homes as we know them today. [Applause.] Can those buildings be

transformed? Yes, they can. [Applause.]

The CHAIRMAN. How would you transform them?

Mr. FLOOD. Well, for example, they could be down-sized. One of

the most deleterious things about going into a nursing home is, you

have to share a room. If you are on Medicaid, you share a 20 × 20

room with a stranger, and that stranger may change every 2 or 3

months. It is not a very humane setting. If we could create an option where nursing homes could at least have private rooms for

people, if their environments could change, if the culture and how

they provide the care and who provides the care could change, then

there is a place for residential settings for certain people.

I am not saying that everybody can stay in their own home at

the end of the dirt road in Vermont forevermore. It is not possible.

So in answering your question, one of the things we have to do, besides expand home- and community-based services, is change those

buildings so they are not the nursing homes of today or yesterday,

but the nursing homes of tomorrow. It is very possible.

The CHAIRMAN. Thank you.

Senator Wyden?

Senator WYDEN. Thank you, Mr. Chairman.

I thank all our panel. In a sense, this debate has not changed

a whole lot in the last 2 decades. Mr. Liston, you come today and

make a powerful statement about the need for independence and

dignity, and that is what all the folks who are behind you are seeking. For 2 decades, the government has essentially come back and

said the same thing.

The government has said, oh, my goodness, if we do what you are

saying, Mr. Liston, there will be this huge problem of woodworking,

this idea that so many people will come out of nowhere to get this

benefit, and then it will be very costly to the government.

So I wanted to ask a couple of questions. I have tried to review

the literature very carefully on this, and I do not see any studies

that have been done that would suggest, with concrete evidence,

23

based on everything that has gone on, that woodworking would be

an enormous problem under what you are talking about. I want to

ask a few questions, and get them in quickly, for you three.

Are there studies that make this argument of woodworking

which would undercut what Mr. Liston, correctly, wants to do?

Gentlemen? You three.

Mr. FLOOD. Let me answer first, quickly, by saying we have been

doing a study on it for 2 years. We opened the door to home- and

community-based services and we did not see a woodworking effect.

Other than that, I know of no study, because you cannot test the

negative.

Senator WYDEN. Right.

Mr. FLOOD. Until you open the door, you have no idea.

Senator WYDEN. I am going to quit while I am ahead. [Laughter.]

Gentlemen, is there any evidence, based on the last 2 decades,

that Mr. Liston and all these good people here are somehow trying

to rip off the government? I cannot find any studies. The government does lots of studies on fraud. I cannot find any studies that

suggest that there have been significant problems with fraud in

any of these programs. Gentlemen, are there studies that suggest

that? Mr. Concannon, so I can get it on the record, no?

Mr. CONCANNON. Not that I am aware of, Senator.

Senator WYDEN. Very good. Well, again, I just want to congratulate the four of you. You are doing the right thing for people. You

are on the right side of history. I would just point out to our friend

from Vermont, Mr. Flood, what Senator Bennett and I are doing

is, we make our long-term care provision in this Healthy Americans Act modeled after what you all are doing in Vermont. I think

you are laying out the future. God speed to you, Mr. Liston, and

all the people who are with you. We are going to fight for this at

every single opportunity we have in the U.S. Senate, and I thank

you. [Applause.]

The CHAIRMAN. Senator Bunning?

Senator BUNNING. Yes. I would like permission to put my opening statement in the record.

The CHAIRMAN. Without objection.

[The prepared statement of Senator Bunning appears in the appendix.]

Senator BUNNING. Mr. Flood, you have discussed Vermont’s approach to home- and community-based care that involves moving

people out of Medicaid institutional care, while putting them into

home- and community-based care, which saves money and gives

seniors an option that they seem to prefer very much. This seems

like an obvious path to take. Could you please elaborate on why

this is not done more often if it makes people happier and saves

taxpayer dollars?

Mr. FLOOD. To be honest with you, I think the problem is—and

this is coming from somebody whose job it is to manage these services and stay within a budget, so I am very pragmatic about this.

I understand how the world goes around. What happens in most

States is, they look at the potential woodwork effect, and they are

afraid to take the leap. States know they are stuck with the nursing home entitlement. They are going to pay that money every

year. They are afraid to take the leap into expanding home- and

24

community-based services because they are afraid of a woodwork

effect.

Now, I think our experience has shown that it is very manageable. There are a number of ways to manage it and to keep control

over those expenditures. I could spend probably an hour, if you

wanted me to, explaining all that, which I do not think you want

me to do. But there are ways to manage it.

I think States are waiting for the Federal Government to give

them the kind of control that CMS gave us through our waiver.

That is what they are waiting for. Until they get it, and they are

going to need the Congress to give it to them, then they are going

to be very cautious about expanding their home- and communitybased services.

Senator BUNNING. Is it true, or is it not true, under the Deficit

Reduction Act, that any State can apply for a waiver of their Medicaid system in their State?

Mr. FLOOD. I actually thought you were going to ask me another

question, which I will come back to in a minute. It certainly is true,

and it has been true for a long time, you can apply for a waiver.

But there are limited kinds of waivers, and we will not go into all

the alphabet soup of waiver numbers.

But the kind that we have is the most flexible and gives us the

opportunity to do what we have done. Nobody else has that opportunity today, nor apparently can they get it. So there are waivers,

yes, but they are limited. What most States do is, they cap their

waivers. So, the interesting question about the Deficit Reduction

Act is, the Federal Government has already done a little bit of

what I am asking for.

In the Deficit Reduction Act, they created a new State plan

under Medicaid for personal care. For the first time ever, they said

it is a State plan service, but you can cap it. You, the States, can

cap it. So they have really limited this option just to personal care

for people at 150 percent of poverty, so they tried to control it. But

then they said, you can cap it.

That has never been said before in a Medicaid State plan service,

so really all I am asking for is to take what Congress has already

done in the Deficit Reduction Act for personal care and expand it

to all home- and community-based services, and, with the savings

the States can generate, I think you will see many, many doors

open.

Senator BUNNING. Mr. LaPlante, in your testimony you discussed

your estimates of cost on the Community Choice Act. Why is it that

this legislation would use additional funds, where a program like

that used in Vermont by Mr. Flood seems to save money? Are there

significant differences in these approaches?

Mr. LAPLANTE. No, I do not really think there are significant differences. It is just a case where sometimes you have to spend a little money to save money, and I think that is what we are talking

about. It would increase the number of beneficiaries under Medicaid who would obtain personal care services, because there is

unmet need for that service that exists throughout the country. But

by providing that extra care or service that people need, there is

the ability to save money, save money by reducing nursing homes.

25

One of the things is, Money Follows the Person, and waivers, and

these approaches, they are all great, but they just do not go that

far. One thing that they do not do, often, is keep people out of nursing homes in the first place. That is what the Community Choice

Act can do, or something like that legislation, is help people to stay

in their homes longer and avoid nursing home stays. That will also

be a great vehicle for saving money.

Senator BUNNING. Mr. Liston, in your experience with the disability community, do you feel that the administration’s Money Follows the Person program has helped the development of home- and

community-based services?

Mr. LISTON. In my experience, those States that have taken advantage of Money Follows the Person have benefitted. The problem

that we see is, if we do not have something that is national, States

can choose to pick a waiver. States can choose to take the Money

Follows the Person. But then what happens if somebody wants to

move from Tennessee to Colorado, and Colorado does not provide

what Tennessee did, or vice versa, in this case?

We need to have something that is offered across the Nation so

that everybody can have at least a basic minimum of services without being penalized for where they move to or where they move

from, and potentially lose services or be put on a waiting list when

they move there. So, I think that is something that is missing out

of the discussion here, too.

Senator BUNNING. The national program you were talking about.

Mr. LISTON. Right. The Community Choice Act.

Senator BUNNING. It will be consistent.

Mr. LISTON. Have it across the board. Every State has waivers,

but they can pick and choose who they want to serve, pick and

choose what services they provide. People should be able to know

what is available across the board and they should be able to

choose. All we are asking for is what you all have, equal choice in

where you can go, and ensure that you have the services and supports that you need at home, no matter where your home is.

Senator BUNNING. Thank you very much, all of you. [Applause.]

The CHAIRMAN. Thank you, Senator.

Senator Lincoln?

Senator LINCOLN. Well, thank you, Mr. Chairman. Thanks for

bringing up such a critical issue for all of us. I do represent the

State of Arkansas, where we have waivers and we have been trying

to bring a little bit of balance to what options are available to individuals. Arkansas is much like other rural States, like the Chairman’s. We are full of a lot of wonderfully independent-minded people in rural States. They like where they live, and they want to

stay there.

I, myself, as a caregiver with my grandparents, and then as we

journeyed with my father almost 9 years with Alzheimer’s, realize

how important it was for them to stay in their home, in the surroundings, in the woods where they grew up. It was important to

them, it was important to us, just as I am sure it is important to

other families and their loved ones, and how critically important it

is to work to make that happen. This week, we celebrate my husband’s grandmother’s 110th birthday. She is still living in her own

26

apartment, and none of us would argue with that, either. [Applause.]

We also know firsthand so many of the trials and tribulations

that family caregivers can face when need arises to care for complex medical needs of loved ones, and certainly being able to find

the appropriate caregivers who are out there in rural areas. I know

that was an issue for us.

We were very blessed to find a woman who—my dad was her 6th

Alzheimer’s patient. It was a blessing to us. But I know that there

were often times when I would see friends of mine, or families, who

would say, where did you find her? How do we find someone like

that? Where do they train these people?

How do we come across those? And then also looking through the

unbelievable web of programs that would be available. How do we

access those for our dad? How did we find the lift chair? How is

it made available to us? The different types of things that are so

important to that quality of care can sometimes be more challenging in rural areas than they are in the bigger areas, there is

no doubt. So, hopefully we are working to make that kind of information available.

I think it can be difficult, even for experts, to navigate the system to locate services. I know we have many people who call our

800 number in the office, and I am fortunate and blessed to have

two incredible women who know how to navigate that system very

well, and they spend a lot of time assisting constituents in that.

The high stress, the emotional period of dealing with family

members who are in need or just diagnosed, that is critically important. Maybe you have some advice from your own program experience for addressing, or even determining, the need for caregivers,

those who are family members and others, but also the search for

caregivers and the programs. To what extent do you think comprehensive caregiver assessment would help? Are some of the programs you have discussed today using those comprehensive caregiver assessments? Is that an option? Is that something that is

helpful?

Mr. FLOOD. If I could start to answer the question. It is helpful.

In fact, I do not know what your experience has been in Arkansas,

but in most places in this country where I would send all family

members, is the Area Agencies on Aging, or the State Unit on

Aging in each State, because the Older Americans Act network

across this country is really the only substantial and universal network where people can go to get help. In fact, those agencies do run

caregiver support programs. I do not think that is widely known.

They also are the source for a lot of advice; they are a source for

respite dollars, which is crucial.

I think one of the key elements in all of this long-term care reform is that the dollars have to be flexible, because what your family needs is going to be different than the family down the road.

We are not as flexible as we need to be yet. So, there are some options there. I think the Older Americans Act and the Area Agencies

on Aging are the places to go. Caregiver respite, caregiver support,

and caregiver assessment are all an important part of the puzzle.

Senator LINCOLN. One of the things we found is, obviously with

the—I do not know that it is obvious, but certainly in all of the

27

medical schools across our country, each one has a Department of

Pediatrics. I think there are only six now that have a Department

of Geriatrics. One of the things we have done at one of those medical schools in Arkansas is to design outreach through our Don

Reynolds Center on Aging and connect with different groups in different areas of our State—the Schmieding Center is one—where

they will actually train family member home caregivers in the

basic necessities of care giving, and really take the opportunity to

get some professional training as a caregiver.

It has been wonderfully successful. People have just been awed

by the fact that there is actually someplace to go where someone

will help them begin to better understand the needs of their loved

one and how they can provide that care themselves. So, I think

that is really important.

One of the other things that I just would like to touch on, I continue to work with my colleagues here on the committee in facilitating the purchase of long-term care insurance, including providing tax incentives for doing so. In addition to the difficulties

many face now in saving for their future and whatever their special

needs may be, I understand that one barrier to purchasing longterm care insurance is the lack of education on the products. There

is a lot there to be done. I know Senator Grassley and I talked

about the pieces in the paper recently about products that have

been sold and some that have not produced what people anticipated

they would.

But thinking about what those products are, what they provide,

educating people on that, as well as educating them on what Medicare and Medicaid will or will not pay for, is important. For, I

guess, any of our panelists, in your opinion, what are some of the

things that we can be doing better to educate the public on longterm care financing options?

Because it is going to become a bigger issue as the baby boomers

get there and they do not, maybe, like the options that they have.

I know we have a greenhouse that will be dedicated, or the

groundbreaking takes place, in November and we are real excited

about that new alternative and option for long-term care.

Mr. CONCANNON. Well, if I might offer something. It would take

Congress to do something about it, but I think it would systematically facilitate better-tailored choices for people across the country.

It would be to consider giving States the opportunity to blend their

Medicare and their Medicaid financing. We have heard testimony

today about the institutional bias of Medicaid. It exists very strongly in the Medicare program as well. There was a previous director

at CMS who was interested in doing this in the six New England

States. I was there at the time.

They were very interested in taking that on as a challenge, of

saying to the Federal Government, let us pool these funds so that

the person gets what they need. You are not subject to the gerrymandering of the way you finance programs.

I believe we could better serve people in this country if we gave

the opportunity, just blend those two programs, and say to States,

you cannot withdraw any money from it, and say to the Federal

Government, you cannot withdraw any money from it, keep it in

the pool to serve that person. Even though CMS has both Medicare

28

and Medicaid responsibility, they are like two different countries.

They really are very, very different.

I think it is an opportunity we should pursue as a country that

actually, I believe at the end of the day, might well lend itself to

the Congressional pay-go sort of rubric as well, saying we could do

more for people by blending these programs without necessarily

spending more money.

Senator LINCOLN. If that were to be a road we would take, my

biggest concern would be, as we began to move, particularly dual

eligibles and others, that we have a program in place that actually

embraces that and has the facilities and the personnel to make

that happen. That would be a huge concern, that we do not make

that bad mistake that was made.

Mr. LAPLANTE. If I might add a consumer perspective. On my

own, I do not have an interest, really, in purchasing long-term care

insurance because the premiums are high, and I do not know what

is going to be out there when I need long-term insurance. Longterm care insurance has a role, but it has been difficult to prove

that it is going to be the solution for people.

Senator LINCOLN. It is not going to be the whole solution. Absolutely.

Mr. LAPLANTE. I still think it plays a role, but I think there are

some other ideas about social insurance options under the CLASS

Act that was introduced that also have merit, which would enable

people to realize that they need to do something about this, and

while they are working, save a few dollars in premiums that can

provide for them in their later years.

The CHAIRMAN. Thank you, Senator, very much.

Mr. Liston, I wonder if you could give us some thoughts about

another hat you wear. You wear many hats in your family, and I

commend you and your whole family and all that you do. But that

is housing, because you head the Montana Fair Housing Board.

How does that play into this discussion here, that is, the availability of housing for people?

Mr. LISTON. Senator, boy, that is a whole other hearing. I mean,

clearly there is going to be a greater need for accessible housing.

We need HUD to enforce the regulations, both 504 and the Fair

Housing Act regulations on accessible housing so that there are

places for folks to move when they decide to move out of nursing

homes and institutions. But I think that that is a smaller issue in

the grand scheme of things.

If I could, I would like to go back to Senator Lincoln’s question

about caregivers for just a minute. I think one thing that folks

need to know is that Centers for Independent Living are the leaders in independent living. A lot of them run personal assistance

programs and can hook folks up with a personal assistant when

need be, and a lot of them are getting folks out of nursing homes

and institutions.

The other thing that I think is really important in this equation,

and I think it goes into some of what Mr. LaPlante talks about in

needing more funds, potentially at the get-go, is we need to look

at people who are caregivers, personal assistants, whatever title we

give them, with respect. People who go into personal assistance

need to be thinking about it as going into a career. People should

29

not get paid as much money to flip a hamburger as they get to flip

a person in a bed because they have a disability. [Applause.]

We need to pay people a liveable wage, with benefits. I think

that that is a real key to the future of long-term care, whether we

are talking nursing homes, institutions, or community-based services. We need to pay people a real wage. Unfortunately, the unions

are on the institutions’ side, and they have a head up.

The CHAIRMAN. You are getting a little advice there. Do you

want to read that?

Mr. LISTON. Getting back to the housing, there are a lot of

folks—again, I think we have kind of focused in on folks with physical disabilities to a large extent. It is important to realize that this

is for people with disabilities, whether they have mental illness,

cognitive, developmental disabilities, or physical disabilities.

So a lot of folks, as they move into housing, may need assistance

with learning how to do things in the house, issues for folks with

cognitive disabilities. Folks who are moving out of nursing homes

or institutions into a home, possibly for the first time, where they

have never had an opportunity to save money, so they are not

going to have money for deposits, first month’s rent, pots and pans,

furniture, those kinds of things, so there needs to be some assistance in helping people get into that first home, or moving back into

a home.

The CHAIRMAN. I appreciate that. I do not know if Senator Kerry

is ready to ask questions at this instance. If you are, fine, Senator.

If you are not, fine, because I have a question I want to ask Mr.

Flood.

When other Senators and people ask me, why has Vermont done

a good job, if you could just boil it down to one or two sentences,

basically what did Vermont do, or what is Vermont doing, that is

helping to bring costs down, yet provide home- and communitybased services to people? Around here, we just go with the bottom

line.

Mr. FLOOD. Yes. Two sentences.

The CHAIRMAN. You have lots of great details and you can fill in

the filler, but just, what is the bottom line that is working in

Vermont? What are you doing in Vermont that is working?

Mr. FLOOD. Number one, we have a State government that is actually committed to helping people live independently and have the

highest quality of life, regardless of their age or disability. That is

number one. You have to have that leadership.

Number two, we have a community-based system that is pretty

collaborative. People work together. We form coalitions, we come to

consensus, and we get things done as a community. It is neighbor

helping neighbor. You take those two things and put them together, and you can do a lot of good things.

The CHAIRMAN. Is the size of your State helpful?

Mr. FLOOD. Well, it is helpful in the sense that we can move faster than Texas. The principles we are operating under are exactly

the same principles, because they are very basic.

The Chairman. All right. Fine.

I might say to Mr. LaPlante, I am going to ask CBO to update

an assessment. You can help, too, by helping us. [Applause.] The

last analysis was some time ago, and there is a lot more sophistiVerDate 11-MAY-2000 15:09 Jun 03, 2009 Jkt 000000 PO 00000 Frm 00037 Fmt 6633 Sfmt 6633 48861.000 SFIN1 PsN: SFIN1
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cated analysis available today based upon States’ experience, and

your research, et cetera that we are going to utilize to help get a

much more realistic estimate.

Senator, I am through with asking questions. Senator Kerry, do

you have questions? Do you want me to wait? I can keep asking

more questions. I can return to you later if you wish.

Senator KERRY. No, that is fine. Is that all right?

The CHAIRMAN. You’ve got it.

Senator KERRY. Thank you. I appreciate it.

I apologize. I was here earlier and then, like often happens, we

have so many competing hearings and meetings. But I very much

wanted to come back and be able to share some thoughts.

The CHAIRMAN. Senator, if you could just briefly suspend, and I

will let you finish up. You can run the rest of the hearing.

Senator KERRY. Sure.

The CHAIRMAN. I have a matter I have to attend to, and am late

already.

But I thank all witnesses, very, very much. Thank you, Bob, Mr.

LaPlante, Mr. Flood, Mr. Concannon, very, very much for all that

you are doing. It is clear, the time is right for renewed discussion

on this. It is here in the bill before us. Senator Harkin is pushing

it, as he should. It is a good hearing. You have just added a lot of

new life and blood in all this, and I deeply appreciate that. I am

going to get that estimate, too, as I mentioned, Mr. LaPlante.

Thank you, too, Mr. Flood, expressly for your State experiences.

That adds a lot. And, Mr. Concannon. I might say, too, that we are

going to work vigorously on this to try to find a good way to really

make this work this year. That is in the short term. But longer

term, I also urge you to be thinking about how this fits into longterm health care reform in America.

As you know, many presidential candidates are, correctly, espousing universal coverage. There is going to be a major change in

the American health care system in the next couple, 3 years. Whoever is elected president is going to probably have a major proposal.

We in the Congress are going to be working aggressively, addressing not only coverage, but also costs. So I am encouraging you

in the interim, you might be thinking about how to deal with

home-based, community-based care and how that might all fit in.

But thank you so much for what you are doing.

I also want to thank all of you folks from Rochester for getting

on a bus to come here. [Applause.] You get all the orange shirts,

but Bob is the head of the yellow shirt team. Montana is a little

further away. If we were a little closer, we would probably have a

few yellow shirts here, too. Thank you all very much.

I will turn the hearing over to the Senator from Massachusetts,

Senator Kerry. Thank you, Senator, for participating here. The

hearing is yours.

Senator KERRY. Thank you very much, Mr. Chairman.

Well, again, first of all, Mr. Chairman, thank you for having this

hearing. I really am impressed and grateful for the crew that has

come down from New York. Thank you for doing that. It is a terrific effort, and it makes a big difference to us.

31

For a lot of folks, it seems as if the long-term care component of

the health care system has just been a kind of shunted-aside, notpaid-attention-to, not-cared-about component of it. Obviously it

should not be. When you talk with families, or with any individual

who is affected by a long-term care issue—and more and more families are nowadays—it just does not make sense, what has been

happening.

We have this system that is just tilted towards the more expensive care, and the care with less independence, with less dignity,

with less caring, in many cases, and then, of course, given the

budget issues, so much more expensive. It just does not make

sense. But institutionally breaking through has always seemed so

difficult. You measure that against the idea of providing quality,

affordable health insurance, obviously, for every American.

I think everybody in this room would agree it ought to be just

a fundamental starting point, it ought to be a right. At least we

ought to begin with the 9 million uninsured kids in this country.

They deserve to get that health insurance long before the wealthiest people in the country walk away with another tax cut.

So, these inconsistencies are just kind of staring at us, and it

makes a lot of folks pretty angry. I think people have been very restrained, considering the absurdity of this contradiction that is

staring at us.

Now, obviously we all know that, when you get into complicated

home care for certain kinds of disabilities or illnesses, it can really

be expensive. The upcoming crush of demand of baby boomers,

many of whom by virtue of their lifestyles, are going to demand a

different kind of care, is going to pose us with a very, very significant challenge.

I think that up until now, obviously, a lot of folks have looked

to long-term care insurance to fill the void that that market is just

unable to provide, an affordable, reliable option that is attractive

to a broad range of the public—and by attractive, I mean also affordable.

So many people wind up using the payor of last resort: Medicaid.

It, as we know, has this strong bias towards institutional care. Not

to mention that is strains State budgets, and then you wind up

with all of these inconsistencies and problems in who gets what,

when, and how.

So our guiding effort, and I think you have articulated it—I saw

some of your testimonies previously—is this crying demand for control, for personal control, over these choices, for availability, access,

for independence, for affordability, for high quality, and, in the end,

for dignity. Those are the things we have to be fighting for.

Senator Harkin has put forward a very comprehensive and admirable effort, but I think everybody here knows that, given the fiscal

constraints we are operating under and given the divisions of the

U.S. Congress right now, that is going to be a heck of a fight to

get that. A lot of us do not want to wait in the interim to provide

some of the changes that we think we can, even as we fight for that

mandatory and comprehensive coverage. And we will.

So, as we kind of rebalance the system, it is not just about the

choice of home care versus nursing home care. It is really about

choice and appropriateness of the things that we make available.

32

I hope this committee, the Finance Committee, will consider options to expand HCBS, including legislation that I am developing.

I want to just throw out three quick pieces of what it is before I

ask a couple of questions.

One, I want to immediately try to see if we could increase access

to HCBS through the State plan amendment option that was

passed in DRA. That is one of the rare, bipartisan provisions of the

bill, and it ought to provide a basis for us to be able to grab something quickly, but it needs to be amended in order to make it more

attractive to the States. To date, as I think came out in the course

of the hearing, only one State, Iowa, has implemented a State plan

amendment.

Two, we ought to fund immediately evidence-based programs

that we know now help to prevent or delay the onset of disability.

For instance, investing in things like chronic disease self-management or nutrition, falls prevention, all of these things will not only

save money for Medicaid, but they are going to improve the health

of beneficiaries as well.

Third, we need to ensure, immediately, greater quality in HCBS

by building on the important work already being done at the Federal and State level, including data collection and reporting, as well

as provide more resources for States that want to empower their

workforce, including informal caregivers, whom we all know can be

a very powerful source of intervention.

According to the Georgetown Health Policy Institute, about 1 in

5 persons living in the community with a need for assistance from

others has unmet needs, endangering their health and demeaning

their quality of life. So, obviously the status quo is not an option.

So I hope we can find a bipartisan consensus on these initiatives,

and I very much look forward to working with the Chair and the

members of the committee to try to do that.

Now, let me just very quickly ask you here, nearly all of you

have cited in your testimony the additional opportunities that were

made available to the States through the State plan amendment

provision in the Deficit Reduction Act. We also know, as I said,

that only Iowa has done this.

Do you agree with the feedback that we have received from State

administrators, advocates, and providers that that option has been

too narrowly restricted based on income eligibility, as well as the

range of services that States are allowed to provide? Mr. Flood, I

see you smiling.

Mr. FLOOD. Yes, yes, and yes.

Senator KERRY. Yes and yes.

Mr. FLOOD. Those are the two biggest problems with it: it only

covers people up to 150 percent of poverty. The reality is, we all

know in this room, that long-term care is a middle-class issue. The

whole middle class needs to rely on Medicaid at some point, not

just people up to 150 percent of poverty. Second of all, personal

care is absolutely crucial. We need other options, or people really

cannot remain in their homes.

Senator KERRY. Anybody disagree?

[No response.]

Senator KERRY. Do you agree that there ought to be some level

of quality assurance that is associated with services via State plan

33

amendment? In other words, CMS and the States have made

progress in recent years ensuring quality management within the

home- and community-based services. I guess that is via the 1915

waivers. But there are almost no requirements for quality assurance under the State plan amendment. So, go ahead.

Mr. FLOOD. It is one of my favorite questions about quality and

home care. First of all, it is a red herring that, if people are living

in the community in their own homes, quality is more at risk. It

is simply not true. People are happier, they are healthier. They

have their families around them, they have their support system

around them. They are much better off than in an institution, number one.

Number two, though, of course you should have some kind of

quality assurance program for any home- and community-based

service system, but I plead with everybody not to model it on the

nursing home system, which is far too bureaucratic. [Applause.]

Just let me say, quickly, we can in fact have a consumer-based

quality assurance system that works. [Applause.]

Senator KERRY. How do you see the chronic shortage of long-term

care workers, especially those working directly with consumers, affecting the ability of States to be able to expand the Medicaid longterm care services? Mr. Concannon?

Mr. CONCANNON. Senator, that is a major challenge, even in

urban areas, but particularly so in the rural areas. But, first, there

are two opportunities that I am mindful of that I think may have

some effect on mitigating that shortage issue. One is, for example,

the Consumer Choices option that we have in our State, and I

think now at least 18 States have, where individuals can hire directly that caregiver. They need not go through an agency. They

may if they so choose. But I think that makes a huge difference,

but it also includes, they may be able to hire relatives.

I have had examples of people, and I am sure other people here

have as well, of family members coming in saying, I would leave

my job to care for this person, but we have to pay our mortgage,

we have to pay the heating bill, et cetera. Most of our programs

prohibit that. But the Community Choice option, which has a center now, by the way, at Boston College, a national center, provides

that opportunity. So that is part one.

The other phenomenon that I am mindful of, and it is occurring

in our State and in others, is organized labor has entered into, and

has a very demonstrated interest in, the workers who provide that

care. Historically, they have not had benefits, they have not had

pay. They have been involuntarily pressed into meeting the Nation’s needs. At least now, I think, there is more attention and

more interest in trying to provide some of the basic supports that

many of us enjoy in other work.

Senator KERRY. Well, it is going to be a huge issue and a huge

challenge.

Mr. Flood, I admire what Vermont has done, and I think Senator

Baucus asked the question. So I am just going to ask Mr. LaPlante

one thing if I can, and then we will wrap up.

You mention in your testimony that many States do not have the

vision or wherewithal to rebalance the long-term support and services system, and it is evidenced by the 20 States that are not parVerDate 11-MAY-2000 15:09 Jun 03, 2009 Jkt 000000 PO 00000 Frm 00041 Fmt 6633 Sfmt 6633 48861.000 SFIN1 PsN: SFIN1
34

ticipating in the Money Follows the Person program. So, obviously

many States need to do more. We all agree to that. But—here is

the but—are you aware of the illogical ways in which CMS is conducting that application process?

That is, States like Massachusetts, which did not apply during

the initial round of applications, are being told they are not eligible

for the second round of applications. The reason is, they are limiting second round funding to only those States that applied and

did not receive the first round funding, punishing States that were

taking their time to make sure that their application was effective

and sensible and sustainable.

So it just seems like this is one of those ‘‘gotcha’’ crazy bureaucratic catch-22s that has no relationship to the capacity of a State

to do what we want them to do.

Mr. LAPLANTE. Well, I think there is bureaucratic entanglement

or bureaucratic messes with incrementalism, such as the Deficit

Reduction Act’s State plan amendment approach is based on. The

statistics are that, depending on what State you live in, looking at

the rate of people who get personal care services under Medicaid

per 10,000 State population, it ranges from 3 people in the lowest

States to 84 people in the highest States. That is a ratio of 28:1.

I think that speaks volumes about the unevenness of the access

to these services that everybody here is talking about, and Senator

Harkin is responding to. So my feeling is, the Choice Act is a little

bit misunderstood in Congress and people have not been paying attention to it because of the large woodwork effect issue and its cost.

So, first of all, I applaud Chairman Baucus for asking for a new

CBO score, and I think that is going to be very helpful.

But another thing the Choice Act does is, it rewards States that

respond within the first 5 years of providing services. I think that

is something obviously that Money Follows the Person is not doing.

It is punishing States. So there should be a larger window that is

available to the States to respond to the DRA initiative.

Senator KERRY. Well, we need to obviously try to get those bureaucratic entanglements out of the way and move this. It is hard

enough to do this without having the agencies that are set up to

make it work get in the way.

Mr. Flood?

Mr. FLOOD. Senator, I would like to just say one thing. I have

been in the State of Massachusetts twice, talking to your people

there about what we do in Vermont. I know that they very much

would have liked to do the same thing that we are doing. The trouble is, we are pecking away at this problem instead of just dealing

with it head on. Money Follows the Person is a great idea, except,

you know what? You have to go to a nursing home first so that you

can get out. It makes no sense.

The DRA provision around personal care is a good start for some

States, but it is pecking away at the problem. I think what the

Congress absolutely needs to do is seize the opportunity and the

momentum now and, if nothing else, give every State the opportunity to do what we do. It could be done with the stroke of a pen.

Senator KERRY. Do you think the bias on the nursing homes is

a sort of stereotyped, old view that that is the only way to have

accountability for the flow of the money?

35

Mr. FLOOD. I think people are all wrapped up in that, absolutely.

There are many, many models all over this country where it has

been shown to work, not just Vermont, but Oregon and Washington

have been doing this for 20 years.

Senator KERRY. Yes.

Mr. FLOOD. The experiments are over.

Senator KERRY. I completely agree with you. But I think it is

that old hang-up. That, and some powerful lobbying. [Applause.]

But what I see, all this orange I see in front of me, is its own powerful lobbying today. So, thanks for being here. [Applause.]

Thank you very, very much. Important testimony. It is a very important topic, and obviously the committee is going to continue to

do its due diligence.

Mr. Liston, I apologize. You wanted to say something?

Mr. LISTON. Senator, if I could, everybody from New York has

been thanked here, but I think it is important for you and the

record to note that we have a lot of folks from Philadelphia, Delaware, Maryland, Kansas, from all over the country who have come

to support this bill. [Applause.]

Senator KERRY. Well, that is great.

Mr. LISTON. I am sure that Senator Baucus will do everything

he can. I hope this committee does everything it can to get this

passed out of committee and onto the floor.

Senator KERRY. I will make sure that I educate Senator Schumer. Shame on Senator Schumer for hogging all of the spotlight

like that. [Laughter.]

Thank you all, from all over the country. We love it. I appreciate

it. Take care.

We stand adjourned. [Applause.]

[Whereupon, at 12:05 p.m., the hearing was concluded.]

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