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75–479 PDF 2002

S. Hrg. 107–158

WHO CARES FOR THE CAREGIVERS?

THE ROLE OF HEALTH INSURANCE IN

PROMOTING QUALITY CARE FOR SENIORS,

CHILDREN AND INDIVIDUALS WITH DISABILITIES

HEARING

BEFORE THE

OVERSIGHT OF GOVERNMENT MANAGEMENT,

RESTRUCTURING, AND THE DISTRICT OF COLUMBIA

SUBCOMMITTEE

OF THE

COMMITTEE ON

GOVERNMENTAL AFFAIRS

UNITED STATES SENATE

ONE HUNDRED SEVENTH CONGRESS

FIRST SESSION

JULY 24, 2001

Printed for the use of the Committee on Governmental Affairs

(

(II)

COMMITTEE ON GOVERNMENTAL AFFAIRS

JOSEPH I. LIEBERMAN, Connecticut, Chairman

CARL LEVIN, Michigan

DANIEL K. AKAKA, Hawaii

RICHARD J. DURBIN, Illinois

ROBERT G. TORRICELLI, New Jersey

MAX CLELAND, Georgia

THOMAS R. CARPER, Delaware

JEAN CARNAHAN, Missouri

MARK DAYTON, Minnesota

FRED THOMPSON, Tennessee

TED STEVENS, Alaska

SUSAN M. COLLINS, Maine

GEORGE V. VOINOVICH, Ohio

PETE V. DOMENICI, New Mexico

THAD COCHRAN, Mississippi

ROBERT F. BENNETT, Utah

JIM BUNNING, Kentucky

JOYCE A. RECHTSCHAFFEN, Staff Director and Counsel

HANNAH S. SISTARE, Minority Staff Director and Counsel

DARLA D. CASSELL, Chief Clerk

SUBCOMMITTEE ON OVERSIGHT OF GOVERNMENT MANAGEMENT,

RESTRUCTURING, AND THE DISTRICT OF COLUMBIA

RICHARD J. DURBIN, Illinois, Chairman

DANIEL K. AKAKA, Hawaii

ROBERT G. TORRICELLI, New Jersey

THOMAS R. CARPER, Delaware

JEAN CARNAHAN, Missouri

MARK DAYTON, Minnesota

GEORGE V. VOINOVICH, Ohio

TED STEVENS, Alaska

SUSAN M. COLLINS, Maine

PETE V. DOMENICI, New Mexico

THAD COCHRAN, Mississippi

MARIANNE CLIFFORD UPTON, Staff Director and Chief Counsel

ANDREW RICHARDSON, Minority Staff Director

JULIE L. VINCENT, Chief Clerk

(III)

C O N T E N T S

Page

Opening statement:

Senator Durbin ................................................................................................. 1

Prepared statement:

Senator Cleland ................................................................................................ 23

WITNESSES

TUESDAY, JULY 24, 2001

Jane Hayward, Deputy Director, Rhode Island Department of Health and

Human Services ................................................................................................... 5

Suzanne Mintz, President and Co-founder, National Family Caregivers Association .................................................................................................................... 7

James Stearns, Esq., Past President and Current Board Member, United

Cerebral Palsy Association .................................................................................. 9

Yolanda Sims, Hope School for the Developmentally Disabled, Member, American Federation of State, County and Municipal Employees, Springfield,

Illinois ................................................................................................................... 12

D.J. (Sam) Chapman, Chief Nursing Administrator, Bureau for Children with

Medical Handicaps, Ohio Department of Health, and National Secretary,

National Association of Home Care Board ......................................................... 13

Mardell Bell, Service Employees International Union, Local 880, Dolton, Illinois ........................................................................................................................ 15

ALPHABETICAL LIST OF WITNESSES

Bell, Mardell:

Testimony .......................................................................................................... 15

Prepared statement .......................................................................................... 53

Chapman, D.J. (Sam):

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

Prepared statement .......................................................................................... 45

Hayward, Jane:

Testimony .......................................................................................................... 5

Prepared statement .......................................................................................... 24

Mintz, Suzanne:

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

Prepared statement .......................................................................................... 32

Sims, Yolanda:

Testimony .......................................................................................................... 12

Prepared statement .......................................................................................... 42

Stearns, James, Esq.:

Testimony .......................................................................................................... 9

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

(1)

WHO CARES FOR THE CAREGIVERS?:

THE ROLE OF HEALTH INSURANCE IN

PROMOTING QUALITY CARE FOR

SENIORS, CHILDREN AND INDIVIDUALS

WITH DISABILITIES

TUESDAY, JULY 24, 2001

U.S. SENATE, OVERSIGHT OF GOVERNMENT MANAGEMENT, RESTRUCTURING, AND THE DISTRICT OF COLUMBIA SUBCOMMITTEE, OF THE COMMITTEE ON GOVERNMENTAL AFFAIRS, Washington, DC.

The Subcommittee met, pursuant to notice, at 2:30 p.m., in room

SD–342, Dirksen Senate Office Building, Hon. Richard Durbin,

Chairman of the Subcommittee, presiding.

Present: Senator Durbin.

OPENING STATEMENT OF SENATOR DURBIN

Senator DURBIN. Good afternoon. The Subcommittee on Oversight of Government Management, Restructuring, and the District

of Columbia, of the Senate Governmental Affairs Committee is now

convened. The hearing will come to order. Thank you all for being

here. Today, the Committee is going to consider the role of health

insurance in promoting quality care for seniors, children and individuals with disabilities.

I might say at the outset for those who will be here for the duration of the hearing, that at 3:40 p.m., there will be a moment of

silence on the floor of the Senate for the two officers who were

killed in 1998, in protection of the visitors and staff and members

of the United States Capitol. On July 24, 1998, at 3:40 p.m., Office

Jacob Chestnut and Detective John Gibson of the U.S. Capitol Police were killed in the line of duty defending this Capitol against

an intruder armed with a gun. So, at 3:40 p.m. today, we will recognize the anniversary of this tragedy by observing a minute of silence in their memory. We hope that you will join us in this symbol

of respect for our fallen comrades.

We will recess the Committee at about 3:30 or 3:35, and then return immediately after that moment of silence on the floor of the

Senate. I wanted to say that in advance. Again, thank you all for

being here. Today, over 2 million Americans provide professional

care to our most precious resources: Our children, our parents, and

our brothers and sisters with disabilities. Many of these important

caregivers are paid very little and they do not have health insurance to cover their own health care needs or the health care needs

2

of their family. This low pay and lack of benefits lead to a very

high staff turnover in these jobs.

For instance, in child care facilities, there is a turnover rate of

more than 33 percent, and for nurses aides working in nursing

homes, turnover can be as high as 94 percent each year. Clearly,

this constant change of staff can affect the quality of care being received. If the staff is constantly turning over, it can be pretty frustrating for an employer to train new staff, only to see them leave

in just a few months. It can also be very expensive. But for those

being cared for, a lack of adequate training of their caregiver can

really affect the quality of care that they received. Studies have

shown that children attending lower-quality child care facilities

and child care facilities with high staff turnover are less competent

in language and social development. Likewise, the quality of care

for seniors and individuals with disabilities is diminished when

high turnover acts as a disincentive to the provision of appropriate

training.

Our hearing today will focus on the need for and availability of

health insurance for hard-working caregivers. Job benefits are one

tool that can help with job retention. Of course, there are other

ways to also help improve care. In my own home State of Illinois,

a recent survey showed that 57.7 percent of home care workers

under the age of 65 had no health insurance. Let me repeat that:

57.7 percent of home care workers under the age of 65, without

health insurance. This compared to 14.7 percent of Illinoisans in

general who had no health insurance. By my calculation, that

means that the rate of uninsured is four times higher for those who

work as home care workers.

The report also found that in the past year, 41.3 percent of the

Illinois home care workers had to choose between buying food and

paying their medical bills. The State of Rhode Island, represented

today by Jane Hayward, has already recognized the importance of

health insurance to caregivers. They pioneered the concept of providing health insurance to certain caregivers. We will be hearing

about that today. We will be hearing about their success with child

care workers. Rhode Island was so convinced of the importance of

improving the quality of care through providing health insurance

that the State funds the program entirely with its own money.

With the full implementation of welfare reform, it is particularly

important that high-quality child care be available for the children

of those who are returning to the workforce. We will have done the

country a clear disservice if children suffer from our efforts to promote work. The first few years of a child’s life are critical. More

and more studies are demonstrating how early childhood development is critical to later success. There can be many benefits from

providing health insurance to caregivers. Not only can it help with

retention, and therefore improve the quality of care, but it can also

help caregivers themselves stay in better health. Many caregiving

jobs are tough jobs. They are stressful. The job can be both physically and emotionally demanding, and if a caregiver’s own health

is compromised because he or she does not have health insurance,

this can make the job even more difficult.

We will be hearing today from individuals who themselves work

as caregivers. In some cases, they have health insurance, but it

3

may not extend to their family members. I know they will be able

to tell us about how important health insurance is to them. We will

also be hearing from the National Family Caregivers Alliance.

They represent family members who are themselves caregivers.

This is an important category. We talk about caregiving as an occupation with a paycheck. There are many caregivers who stay at

home with members of their families, who do not receive a paycheck, but give as much care, if not more, than anyone working a

9 to 5 job.

As we all know, many family members make incredible sacrifices

to look after their loved ones. The California Caregiver Resource

Center estimates that family caregivers who attend to those with

Alzheimer’s, stroke, Parkinson’s, traumatic brain injury, or other

adult-outset brain-impairing diseases and disorders provide an average of 73 hours of care each week, more than 10 hours a day;

16 percent of family caregivers report their health has worsened

since becoming a caregiver, and clearly access to health care service is important to them. These family members perform a wonderful service, allowing their relatives to remain in the community.

Some family members are forced to quit their own job so they

can take care of a relative. This sometimes means that they lose

their own health insurance. This can happen at any age. Over 40

million Americans are uninsured today. We live in the wealthiest

country in the world and still so many lack access to the most fundamental benefit, health insurance. Personally, I think it is time

we move forward to eliminate this blemished record. We have made

progress in the last few years with enactment of the State Children’s Health Insurance Program. Hopefully, we will extend it this

year to cover the parents of those kids. A good next step would be

to provide States with resources in the same manner that we did

with the Children’s Health Insurance Program and allow the

States themselves to design programs to extend coverage to caregivers.

The Children’s Health Insurance Program was voluntary; no

State was obligated to participate, but every State has chosen to

do so. States now have experience with the program. Many have

learned from the experience. It is really an ideal model to build on.

Such an approach would avoid duplication and can be administratively very cost-effective. We all talk about how much we value

caregivers. I think it is time we step up to the plate and show how

much we care by ensuring that all caregivers in America have

health insurance.

It always struck me as curious, as I visited daycare facilities,

nursing homes, and spoke with the disabled, that we entrust our

most valuable assets on Earth to these people, and yet we know

that it is a very tough job; it is very stressful; it pays usually little

more than a minimum wage and has no health care benefits. It is

said that if you want to know how a community values education,

drive by the school and take a look. If it is run and beat up, there

is a possibility that there is not the keen interest in education that

they might profess when they speak to others from other towns. I

think the same is true when you look at people who are caregivers.

How much do we love our children and grandchildren? How much

do we love these parents and aunts and uncles, who need help in

4

a nursing home or a convalescent center? How much do we care for

those disabled among us who need a personal attendant, perhaps,

just to make their lives really work each day, so that they can be

part of our community and make a real contribution to America?

The real test is the pocketbook test. How much money are we

putting on the table here? What I am suggesting is to follow the

lead in Rhode Island, which has come up with, I think, an innovative program that can give us some guidance as to how much this

program can mean if we do it on a Federal basis. I would like now

to welcome and introduce today’s panel of witnesses: Jane Hayward, Deputy Director of Rhode Island’s Department of Health and

Human Services. You have sent us some excellent senators and we

are happy that you came down yourself to join us today.

Ms. HAYWARD. Thank you very much.

Senator DURBIN. The State of Rhode Island has pioneered the

idea of caregiver health insurance and used their own State funds

to enact the RIte Care program, providing health insurance to child

care workers through Medicaid. Suzanne Mintz is the President

and Co-founder of the National Family Caregivers Alliance. She

has over 20 years of experience as a family caregiver and as a businesswoman. She co-founded this organization to represent families

that care for their loved ones.

James Stearns, former President of United Cerebral Palsy—this

nationwide organization represents patients with cerebral palsy

and other disabilities who are often in need of caregiving.

Yolanda Sims from Springfield, Illinois is an aide at the Hope

School for the Developmentally Disabled. She will share examples

from her own experience of the importance of health insurance to

a caregiver, and I will confess at the outset, as I told her earlier,

I know about Hope School, at least 20 years ago. I was their attorney at the time when I practiced law in Springfield.

Sam Chapman is the Chief Nursing Administrator—I had to look

twice; Sam is a nickname, obviously—Administrator for the Bureau

for Children with Medical Handicaps of the Ohio Department of

Health. She gained valuable firsthand experience as the former Director of the Fairfield Visiting Nurses Association in Lancaster,

Ohio. Mrs. Chapman is testifying today as the national secretary

on the board of the National Association for Home Care, the Nation’s largest trade association representing the interests of home

care agencies, hospices, and home care aide organizations. Thank

you.

Mardell Bell is a member of Local 880 of the Service Employees

International Union, and comes to us from Dolton, Illinois. We are

glad to have you here. The SEIU represents over 175,000 home

care workers and has compiled a survey on the effects of lack of

insurance for home health aides in Los Angeles. We thank you all

for coming to this hearing, and to show you the process of the Senate and this Subcommittee, it is customary for us to swear in all

witnesses. Therefore, I ask you to stand and raise your right hand.

Do you swear that the testimony you are about to give before this

Committee is the truth, the whole truth, and nothing but the

truth?

Ms. HAYWARD. I do.

Ms. MINTZ. I do.

5

1The prepared statement of Ms. Hayward appears in the Appendix on page 24.

Mr. STEARNS. I do.

Ms. SIMS. I do.

Mrs. CHAPMAN. I do.

Ms. BELL. I do.

Senator DURBIN. Let it be noted for the record that all the witnesses answered in the affirmative and therefore will be allowed to

testify. Ms. Hayward, I am going to ask you if you would limit your

oral statement to 5 minutes. Your complete written statement will

be made part of the record, and then we can engage in dialogue

and questions. Please proceed.

TESTIMONY OF JANE HAYWARD,1 DEPUTY DIRECTOR, RHODE

ISLAND DEPARTMENT OF HEALTH AND HUMAN SERVICES

Ms. HAYWARD. Good afternoon, Mr. Chairman. Thank you for the

opportunity to speak with you today about a Rhode Island strategy

to support caregivers.

In particular, child care workers. Let me tell you a little bit

about the background and how we came to do this. With the advent

of welfare reform, Governor Lincoln Almond and the Rhode Island

General Assembly exercised great leadership and took very positive

and proactive steps to provide low-income families with the support

they need to be successful in the work place, and those supports,

as we defined them, were child care and health care.

The Family Independence Act of 1997, which was Rhode Island’s

welfare reform statute, had two pieces to it that are pertinent to

our discussion today. The first established the Nation’s only entitlement to child care for families who are trying to balance work and

family responsibilities as they transition to self-sufficiency, and the

second broke new ground. It was the implementation of fully-paid

health insurance for certified family providers and for their families. Additionally, the Starting RIght initiative, which is Rhode Island’s early care and education initiative, extended support of

health care coverage to employees of center-based programs.

In addition, at the same time, similar gains were being made in

increasing access to health care by expanding eligibility to working

parents up to 185 percent of the Federal poverty and to uninsured

children in families with income up to 250 percent of poverty. What

were we trying to achieve when we decided that health insurance

was a good tool to help us in the child care industry?

We wanted to increase the capacity within the industry, as welfare reform, we knew, would bring additional demands on an

already-strained industry. We also wanted to try and help to stabilize the workforce in the child care industry. As you indicated,

Mr. Chairman, that turnover is very high. Finally, we wanted to

provide access to health insurance to an industry that was underserved, if served at all. Low wages escalating health insurance premiums make the cost of health insurance prohibitively high for

both certified family providers and many center-based programs.

So how does it work? What do we do?

Both child care centers and family providers must hold licensure

and they have to make a commitment to serving low-income children. Certified family providers must earn $1,800 within a 6-month

6

period, taking care of youngsters who receive subsidy through our

child care assistance program. They are allowed to maintain that

coverage as long as they continue to maintain the minimum number of youngsters in their care. That coverage is provided through

the RIte Care program, which is Rhode Island’s managed care

Medicaid program. In addition, licensed centers must maintain

that same commitment to low-income youngsters, and they must

maintain 40 percent of their total enrollment, being youngsters

who receive subsidy through child care assistance.

Coverage for them, however, is provided in a different way, and

we use a premium assistance strategy to cover them and offer 50

percent of the cost of their premium to the center. That allows

them to continue to stay in employer-sponsored insurance. It is

good for the health insurance market. It is good for the center and

it is certainly good for the employees and their families. The cost

of providing these health care options for State fiscal year 2001

was $1.3 million, and that is in a $66 million child care program,

all State dollars.

I would imagine that one of your questions would be whether we

think we got a good return on our investment. Currently, we have

267 certified family providers and 237 of their youngsters enrolled

in RIte Care. In addition, we have 56 centers who are receiving

premium reimbursement covering 587 staff and their families. We

increased capacity among licensed and certified providers by 31

percent. Family provider placement opportunities increased by 43

percent; centers increased by 12 percent, and we doubled the number of subsidized children from 1997 to 2002. We think we made

a great investment.

We also believe that this model can work to benefit other caregiver groups. Fully paid health insurance could clearly support personal care attendants, readers for the blind, interpreters for the

deaf. All of these groups are undervalued, underpaid, and have

high turnover. Again, they are very similar to family child care

providers. In addition, Rhode Island has established recently a premium assistance program through its Medicaid and SCHIP programs, and what we are doing is aggressively marketing the agencies that are caregiver agencies—nursing homes, home health

agencies, residential treatment facilities, group homes—in an effort

to try and assist them with their health care. But to date, we have

been paying for it alone.

Our suggestion to the Subcommittee is that this is a wonderful

tool to be able to build capacity within these kinds of industries

and to support the caregivers. We do think, however, that States

who may want to use this tool to support their caregiving industries could benefit from some flexibility under Federal programs.

For instance, for those who are working in industries receiving

Medicaid or SCHIP financing, flexibility for health insurance premium as a cost of care for those who would not normally be eligible

for Medicaid would certainly be a help, whether that is in a matching rate or whether it is in a grant activity. Similarly, the flexibility to use the child care development block grant and to have the

cost of health insurance be an allowable cost would significantly increase other States’ ability to model this program. We think this

has been a tremendous success. We would recommend it to other

7

1The prepared statement of Ms. Mintz appears in the Appendix on page 32.

States, and I thank you for your time, Mr. Chairman, and I would

be happy to take any questions.

Senator DURBIN. I will have some questions, too, and I thank you

for your attendance here today. It really is a good place to start in

this hearing, because Rhode Island has done it, and you can tell

us what your experience has been. The statistics are very impressive.

Suzanne Mintz.

TESTIMONY OF SUZANNE MINTZ,1 PRESIDENT AND COFOUNDER, NATIONAL FAMILY CAREGIVERS ASSOCIATION

Ms. MINTZ. Mr. Chairman, thank you for this opportunity. My

name is Suzanne Mintz, and I am the President and Co-founder of

the National Family Caregivers Association—not alliance—and I

am myself a family caregiver. NFCA exists to educate, support and

empower family caregivers and speak out publicly for meeting caregivers’ needs. We reach across the boundaries of differing diagnoses, different relationships and different life stages to address

the common concerns of all family caregivers.

NFCA’s members tend to be heavy-duty caregivers, meaning they

are providing extensive hands-on care on a daily basis, helping

loved ones dress, bathe, toilet, etc.

Senator DURBIN. Excuse me. Would you pull the microphone

down just a little bit? Thank you.

Ms. MINTZ. For three-fifths of these caregivers, caregiving is the

equivalent of more than a full-time job. Although the term ‘‘family

caregiver’’ is now understood by many, I do not believe that the

role of family caregivers in society is thoroughly appreciated. Family caregivers are literately underpinning our health care system.

The vast majority of care provided to chronically-ill, disabled individuals, or the elderly is provided by family caregivers. Approximately two-thirds of seniors rely solely on family or friends for

their care, without any support from the formal system.

Caregiving is everywhere. Seventy percent of the population says

it is either a caregiver now or knows someone who is a caregiver.

The conservative market value of services provided by family caregivers was estimated to be $196 billion, and that was in 1997. The

market value at the time for professional home care and nursing

care services combined was valued at $115 billion. As the population continues to age, as medical science continues to extend the

lives of persons with chronic illness, and as health care containment policies send people home from hospitals sooner and in need

of more care than ever before, you can expect to see an increase

in the number of people who will need to be cared for.

Caregiving and its impact is the issue of our time. caregiving is

often a continuum. For many, it begins by providing a small

amount of assistance to an aging parent or spouse with a degenerative disease, and then over time becomes a 24–7 experience. For

others, intensive caregiving begins very suddenly, as when a baby

is born severely ill or when a loved one is in a terrible car accident

or has a massive stroke. Listen to these comments from a family

caregiver in Rockville, Maryland: ‘‘I am a 35-year-old mother of a

8

5-year-old, severely disabled daughter, Kaylee. She suffers from a

rare genetic disorder. Kaylee is given 13 medications a day, just so

she can survive. She is fed via a G-tube. She requires 24-hour medical care.’’

The physical and emotional impact of intensive family caregiving

has been well-documented. These caregivers are known to suffer

more depression and other stress-related ailments than the general

population. In a NFCA member survey, 61 percent of caregivers reported depression, 51 percent sleeplessness, 41 percent back problems. A study published in the Journal of the American Medical

Association showed that elderly spousal caregivers under stress

have a 63 percent higher mortality rate than non-caregiving

spouses. A caregiver in her 80’s from Champlain, Illinois, puts it

this way: ‘‘I am just stressed out. I have come to a point where I

just really worry all the time. I am exhausted.’’

Caregiving is expensive. Families in which one person has a disability and needs help with daily living activities spend two-anda-half times more out-of-pocket on medical expenses than families

without a disabled person, 11.2 percent of income. Thirty-five percent of the general population has an income of less than $30,000.

Among caregiving families, that percentage rises to 43 percent.

Caregiving literally extracts a price from caregiving families. The

majority of family caregivers are employed, nearly 64 percent, but

over a third have reduced their work hours or taken time off because of caregiving responsibilities.

Six percent of those caring for the 50-plus population have left

the workforce because of their caregiver responsibilities. Adding to

the problem, family caregivers who leave the workforce not only

lose their paychecks, they lose the future benefit of the additional

Social Security credits they would have earned.

Although I am not familiar with any studies that document how

many caregivers have lost their group health insurance because

they have left the workforce, anecdotal information from NFCA

members suggests that for some caregivers that is, indeed, the

case. This is a sample of what we were told when we sent out an

E-mail asking that question: ‘‘My husband’s job ‘disappeared’ after

his stroke in 1998 and with it our medical coverage.’’ ‘‘I had to give

up both work and health insurance for a period of 6 years due to

caregiving responsibilities.’’ ‘‘I have been a caregiver for my mother

and aunt, both in their 80’s, since 1991.’’ ‘‘I had to quit my job last

year when my mother had another heart attack.’’ ‘‘I lost health,

dental, vision and disability insurance, plus, pension and deferred

compensation.’’ ‘‘I am presently retaining my health insurance

through COBRA, but it costs me $304 a month and it will run out

on January 1, 2002.’’

It is clear that family caregivers are making a tremendous contribution, not only to their individual loved ones, but to American

society as a whole, and some of them are doing so at a huge physical, emotional and financial cost. If we expect family to provide

high-quality care for chronically ill, disabled or aged loved ones,

then the work that family caregivers do, the uncompensated work

of caregiving that is done with feelings of love and out of a sense

of duty, needs to be valued and supported in direct and meaningful

ways. Without family caregivers, our current health care system

9

1The prepared statement of Mr. Stearns appears in the Appendix on page 37.

literately could not function. The length of hospital stays, the need

for institutionalization and professional home care services would

expand significantly if families were not bearing the burdens of extensive caregiving.

Therefore, it is in the government’s interest to help ensure the

health of family caregivers by providing for a high-quality health

insurance to the caregivers who need it. It is in the government’s

interest to support the work of family caregivers and create a more

equitable balance between what a family is expected to do on its

own and what is more the province of professional providers. If a

family caregiver gets sick or dies, who, then, will care for their

loved one? It is less costly, more humane and better policy to protect the health of family caregivers while we can, providing them

with quality health insurance is one of the ways to do that.

Thank you, Mr. Chairman.

Senator DURBIN. Thank you. That was an excellent statement.

James Stearns.

TESTIMONY OF JAMES STEARNS, ESQ.,1 PAST PRESIDENT AND

CURRENT BOARD MEMBER, UNITED CEREBRAL PALSY ASSOCIATION

Mr. STEARNS. Good afternoon, Mr. Chairman and Members of the

Subcommittee. I am James Stearns, current board member and

past president of the United Cerebral Palsy Association. I appreciate the opportunity to testify before you today on the importance

of health insurance and other compensation for direct support attendants for people with disabilities.

I personally have the condition of cerebral palsy. I have spent

time in a rehabilitation facility and I have been helped significantly

by direct care attendants. My remarks today will be based on my

experience and also the experience of many individuals with disabilities that we have surveyed throughout our organization. Direct

support attendants assist people, as many of us know, with disabilities in daily activities, such as eating, dressing and using the

bathroom. These attendants are truly essential to the ability of

hundreds—Mr. Chairman, hundreds of thousands of people with

disabilities—to live as independently and as productively as possible.

There is a national crisis today, Mr. Chairman, which we know

you recognize, with these services because Medicaid and other

third-party programs simply are not keeping pace with the costs

necessary to provide quality attendant services. And this crisis, unfortunately, despite the efforts of many people, is getting worse.

Mr. Chairman, as you probably know, the required number of personal care attendants is expected to grow from 256,000 in 1998, to

374,000 in the year 2006, according to a recent Labor Department

study. Even with the current demand, as indicated by these numbers, however, our UCPA affiliates are unable to recruit and retain

enough personal care attendants.

These affiliates report to us nationwide job vacancy rates as high

as 35 percent, and few are accepting new clients for attendant services. This means, Mr. Chairman, that literally thousands of peoVerDate 11-MAY-2000 15:47 Jun 28, 2002 Jkt 000000 PO 00000 Frm 00013 Fmt 6633 Sfmt 6633 75479.TXT SAFFAIRS PsN: SAFFAIRS
10

ple—I repeat that, thousands of people with disabilities are languishing in costly government-funded institutions and thousands

more are living at home with elderly parents who are increasingly

unable to take care of them. This is a shocking waste, Mr. Chairman, of both human capital and Federal tax dollars.

We ask the question: Why is there an attendants shortage? Medicaid and other third-party payers usually do not cover the necessary costs of employing attendants. Private health insurance seldom covers any attendants services, while Medicaid often pays very

low rates. For example, Medicaid attendant reimbursement rates

were as low as $5.24 an hour in California in 1999; in the State

of Maine, $6.25 an hour; in Michigan, $6.50 an hour. All these figures, Mr. Chairman, come from a study funded by the Federal Department of Health and Human Services.

Mr. Chairman, in view of these low payments, it is simply not

surprising that the national average wage for personal care attendants was $7.72 an hour in 1999, according to Labor Department

studies. If you do the math, Mr. Chairman, that comes to a fulltime annual income of $16,060, which, as we understand it, is $969

below the 1999 poverty rate for a family of four—$969, I emphasize, below the poverty rate in 1999 for a family of four. Despite

these problems, Mr. Chairman, as you know, most attendants are

highly dedicated to the people they serve, but they cannot ignore

the economic reality of low compensation. Indeed, compensation is

a key factor in aide turnover, according to an HHS-funded study

in California last year. So it is not surprising that our UCPA affiliates nationwide have a turnover rate of approximately 100 percent.

I did not misstate that—100 percent, Mr. Chairman, per year, for

direct support workers and other providers that speak to us have

similar rates.

Mr. Chairman, we emphasize to you today as a national organization that the role of these attendants is critical to the well-being

of individuals with disabilities. For example, as you know, if medications are not properly administered to a person, that person’s

very life may be endangered. Some of the things, and these are just

some of the things, anecdotal examples, Mr. Chairman, that an attendant needs to be trained for include, besides administering medicine, which we spoke to a moment ago: Transfer and lifting; showering; dressing; feeding; catheterization; disability sensitivity; punctuality and general people skills; and cooking.

Let me share with the Subcommittee just a few anecdotes from

members of our organization. One attendant, for example, mixed

the peas with the applesauce, because they simply did not seem to

know any better. They simply had not been trained. Another asked

a person with a disability if he needed to turn on the stove in order

to cook dinner. Again, we are not being at all critical of the attendants, that is just the problem with training. Another aide, when

asked to be on time, said ‘‘find another attendant.’’ Serious consequences flowed from that incident. If the attendant does not show

up on time, for many people with disabilities, that means they cannot get out of bed. They cannot even take care of bathroom needs.

And if the person is late for a job, the person with a disability, because of the attendant’s tardiness, that person’s job can be put at

risk.

11

We found, Mr. Chairman, that improper feeding methods can

lead to choking, and improper lifting may mean that the person

with disabilities, who obviously already may have some frailties,

can be dropped. If the attendant hurts himself or herself through

improper lifting, then the attendant can become suddenly unavailable to help that particular client. If an attendant, conversely, is

unavailable for any reason, their client’s ability to get out of bed,

go to work and keep appointments may become impossible. Other

examples, Mr. Chairman—an attendant may need to drive a car,

travel with their client, and know what to do in emergency situations.

In addition, personal security is an issue with high turnover

rates. Caregivers may be given a key to the home and the car, access to bank accounts and access to the telephone. In the worst of

all cases, the caregiver relationship can create a situation where

the person with disabilities is vulnerable to abuse until they are

able to get to a place of safety. High turnover rates, Mr. Chairman,

can also mean that the person with disabilities has to constantly

retrain attendants. The training period means that everything

takes longer, and this has a ripple effect through the day of the

person with disabilities.

Mr. Chairman, studies have noted, as I said above, that 45 percent, for example, of Los Angeles County home care aides lacked

health coverage last year, while 60.6 percent of California personal

care aides statewide lacked it in 1999. Although millions of other

low-income people also are uninsured, the aides’ lack of health coverage has two serious consequences which we ask you to take notice of today. First, people without insurance are less likely to obtain timely medical treatment. This leads to more serious conditions and more time lost from work. Second, Mr. Chairman, when

an aide has a communicable disease, delayed treatment increases

the risk of transmitting that disease to the person served by the

aide.

UCP believes, Mr. Chairman, that additional steps, besides the

insurance question we are talking about today, need to be taken to

solve the aide crisis. We support legislation to increase Medicaid

State reimbursement rates to a specified target amount, such as,

for example, the States’ average State institutional aide wage rate.

Under this approach, Mr. Chairman, the added cost would be 100-

percent funded through an enhanced Federal Medicaid contribution.

Mr. Chairman, in conclusion, UCP strongly supports your draft

bill to provide State formula grants to offset all or part of the cost

of caregivers’ health insurance. We believe the enactment of your

bill is one of several critical steps that should be taken immediately

to prevent the imminent collapse of community-based aide services

for people with disabilities. Mr. Chairman, our organization thanks

you for your time, your commitment and the commitment of your

staff. We stand forward to help in any way possible and to answer

whatever questions you may have for us.

Thank you.

Senator DURBIN. Thank you, Mr. Stearns. Ms. Sims.

12

1The prepared statement of Ms. Sims appears in the Appendix on page 42.

TESTIMONY OF YOLANDA SIMS,1 HOPE SCHOOL FOR THE DEVELOPMENTALLY DISABLED, SPRINGFIELD, ILLINOIS, MEMBER, AMERICAN FEDERATION OF STATE, COUNTY AND MUNICIPAL EMPLOYEES

Ms. SIMS. Good afternoon. My name is Yolanda Sims. I want to

thank you, Senator Durbin and the Subcommittee, for letting me

speak today about the importance of health insurance for direct

care workers. The Caregivers’ Access To Health Insurance Act of

2001 would help thousands of caregivers and their families get affordable health care. Thank you for introducing this legislation,

Senator Durbin.

I am a member of AFSCME Council 31, Local 2481 in Springfield, Illinois. I am also a member of our collective bargaining committee. I am proud to say that we in AFSCME are working hard

to improve wages, benefits and working conditions for caregivers.

We won our fight for better wages for direct care workers who care

for people with disabilities. Employees campaigned to give caregivers a $1 per hour raise. Although we have not received it yet,

that will bring the starting wage at Hope School to $9.24 an hour.

I am a lead teacher aide at the Hope School in Springfield, Illinois. The school provides education and other services for children

and youth with multiple disabilities ages 6 through 21 years old.

I have been with the school for 5 years. My husband, Robert, works

at the school, as well. We have two children; Nathaniel, 8 and Natalie, who is 5. My employer’s office has health insurance. My husband and I are covered. We have to pay $20 per month taken out

of each of our paychecks to pay for our individual premiums, but

family coverage costs $260 a month. That is 12 percent of our takehome pay. On top of that, there is a $250 deductible and a 20 percent co-pay.

This could really put you in a bind when you have to pay rent,

utilities, have reliable transportation so you can get to work, and

other costs of living. When birthdays and Christmas comes up, I

have to do overtime just to cover them and that overtime is not always available. Even though I know it is important for my kids to

be covered, my husband and I just cannot afford it. The kids used

to be in Kid Care, but when I got married they were disqualified

because our combined income was too high. Anyone who has raised

children knows that even if they are usually healthy, things happen. But I cannot afford to buy family coverage that is offered by

my employer. I cannot afford to take them to the doctor. So when

my son falls and needs stitches, I take him to the emergency room.

When one of my children starts to get sick, I go to the drug store

and I buy vitamins and whatever over-the-counter medicines I

think will help them. They do not see a doctor unless it gets really

bad. Then I take them to the emergency room. Then the hospital

sends me a bills that I pay off as much as I can.

Two-and-a-half years ago, my husband had kidney stones. He

had to have surgery. Even though he has health insurance, it did

not cover everything and we are still paying it off. Little by little

every month, we pay what we can. Balancing the cost of daily living and health care costs can be very stressful. You do all you can

13

1The prepared statement of Ms. Chapman appears in the Appendix on page 45.

to keep your children from getting sick, but things happen that are

out of your control. Recently, my daughter caught poison ivy. I

tried to treat it myself, but I had no knowledge of how poison ivy

looked. I thought she had the chicken pox and treated it as such.

But it just keep getting worse and spreading. Finally, I had to take

her to the emergency room and that is when they informed me that

it was poison ivy. By this time, she needed treatment and a prescription that could have been avoided. Since I did not recognize it

right away, I had to pay for the prescription, and I now have other

medical bill to pay off on top of the huge pile of medical bills that

I already have.

I feel like if I had affordable coverage, I could have a regular doctor for my kids, a doctor who is familiar with them and could have

helped them without me having to go to the emergency room. One

thing that I feel really bad about is that I know my son is going

to need braces, but we do not have medical coverage. I do not think

we are going to be able to pay for it ourselves. I have to live with

the thought every day that if I do not figure out something soon

he might have permanent damage to his teeth. I believe that if all

workers at my school had health insurance, they would be able to

be more effective with the kids we work with.

First of all, when a family member is sick, it makes you really

stressed out if you are not sure if you can pay to see a doctor. So

you worry about how long should I wait before going to the emergency room? Will they get better on their own? When you are

stressed, it is harder to really focus on the kids you work with. Another thing is that at my school there is a lot of turnover. One of

the reasons people leave is because the pay and the benefits are

not good. Turnover is rough on consistency with the kids and staff.

They regress in their programs. They start to lose skills. Every

time a new staff member comes, it is like starting all over again.

The youth begin to act out with people they know. Instead of

helping them to reach their fullest potential, we end up just babysitting. This can be frustrating to staff members who want to see

the children succeed. If we had affordable health insurance, I think

more people would stay. I think there should be more public funding of insurance. I know that when my kids need care and we use

the emergency room, I am taking a doctor’s time away from a real

emergency. If more affordable health insurance were available, I

would use it. My kids could have their own doctor and have regular

checkups and maybe we would not be spending all of our money

on bills from the ER.

Thank you for this chance to tell you how important affordable

health insurance coverage is for caregivers and their families.

Senator DURBIN. Thank you, Mrs. Sims. Mrs. Chapman.

TESTIMONY OF D.J. (SAM) CHAPMAN,1 CHIEF NURSING ADMINISTRATOR, BUREAU FOR CHILDREN WITH MEDICAL HANDICAPS, OHIO DEPARTMENT OF HEALTH; NATIONAL SECRETARY, NATIONAL ASSOCIATION OF HOME CARE BOARD

Ms. CHAPMAN. Good afternoon. I have a career history as a home

health administrator, first, for Children’s Home Care Services,

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which is located in Columbus, Ohio, and until recently for the Fairfield Visiting Nurses Association, which is a department of Fairfield Medical Center, and I have offices in Lancaster, Logan and

McConnellsville, Ohio. On August 13, I will be, again, in my fulltime position with the Ohio Department of Health, Bureau for

Children with Medical Handicaps, as the chief nursing administrator. In addition, I have the privilege of serving as the secretary

to the National Association of Home Care Board, and in this position I represent the views of 4,000 home care agencies nationwide.

I am also the primary caregiver for my 83 year-old diabetic mother.

Throughout my career, I have dedicated myself to the provision

of quality care to children with special health care needs and to the

fragile elderly requiring home health care. I also have worked to

support the workforce of caregivers, the dedicated home health

aides who are the backbone of the home care industry, because I

myself began my career as a nurse aide. Home health aides provide

the most intimate care to our elderly and medically fragile children, bathing, feeding, wiping the drool from their mouths, offering

encouragement to recovery stroke victims and assisting children

confined to a wheelchair get ready for school each morning. Without the help of an aide who arrives at 5 a.m., a patient of mine,

a child, could not receive the education he has a right to.

I am here today to address the difficulty that home care agencies

are facing in attempting to secure sufficient staff to meet the growing demands for home health aide services. It is my belief, and that

of others in the industry, that expanding the availability of health

insurance for caregivers and their families is the key ingredient to

the recruitment and retention of this workforce.

The home health aide profession is dominated by women who, at

best, have a high school education. The majority are single heads

of household with school-age children or younger, and the average

age is around 40. They are the most dedicated individuals that I

have had the privilege to work with. The staff working for the VNA

that I am the administrator for, had the opportunity to purchase

family health care coverage for $42.60 a week, or $2,000 annually,

which was about 30 percent of the total health care premium. My

agency had the luxury, because we were associated with a hospital,

to be able to provide these benefits to our staff. Most agencies,

however, in our State require 50 to upwards of 100 percent total

employee contribution.

Over 20 to 30 percent of aides in our agency and statewide

choose not to purchase insurance from the agency. They elect not

to purchase these services because they need to be able to pay

housing, electricity, be able to buy school supplies for their children. We have one of the best plans and our staff still cannot afford

to purchase this health care insurance. The challenge of providing

a livable wage and benefits to this caregiving staff is one of the biggest, if not the biggest, challenge facing home care agencies, no

matter what their organizational structure is. As I previously said,

the FVNA, due to its affiliation with the parent hospital, was able

to offer health insurance coverage to our employees. However, the

ability to offer and the employee’s ability to select and afford this

benefit are two entirely different questions.

15

1The prepared statement of Ms. Bell appears in the Appendix on page 53.

For the majority of agencies, they have seen their health insurance costs raise at the rate of 18 to 20 percent a year. They have

been forced to choose between offering salary increases or increasing the employees’ contributions to cover this rising cost of health

insurance. Agencies have also witnessed the effect of rising gasoline prices. They have been forced to increase their mileage reimbursement to staff or they face the loss of the staff. For one northern Ohio home care agency, this mileage increase added $200,000

to their annual expenditures. This expenditure was just so that our

aides could continue to provide services to the patient that we care

for.

There have been no increases in funding for services and agencies have been required to carry the burden of unfunded regulatory

requirements. All of the above, plus low unemployment rates, are

leading to the next crisis in health care, the patient access crisis.

Agencies cannot provide needed care if they do not have the aides

to provide the care. To assist in stopping this crisis, I would encourage Congress to continue to expand access for caregivers to

health insurance by initially providing Federal subsidy for health

insurance for caregivers; second, by mandating Medicare, Medicaid

and other Federal programs that finance home care and hospice

services, to adjust reimbursement rates to allow for appropriate

benefit levels for staff; third, requesting governmental studies related to the lack of health insurance coverage for caregivers and

what can be done to overcome this problem; and finally, reducing

Federal unfunded regulatory burdens and costs that home care

agencies have been forced to comply with in order to continue to

provide services to their patients.

If the above recommendations were implemented, then maybe no

other home care administrator would be forced to make the hard

decision to close their McConnellsville office, as I was. I had to

close an office where the unemployment rate was one of the highest

in Ohio, in a location that is underserved, economically depressed,

and where 75-plus patients now have an access to quality health

care. Mr. Chairman, on behalf of the members of the National Association of Home Care, the elderly, children with special care

needs, and more importantly, for the home health aides that I represent, I thank you for your gift of time, and for holding this hearing on this important health insurance issue for caregivers.

Thank you.

Senator DURBIN. Thank you for your testimony. Ms. Bell.

TESTIMONY OF MARDELL BELL,1 LOCAL 880, DOLTON,

ILLINOIS, SERVICE EMPLOYEES INTERNATIONAL UNION

Ms. BELL. On behalf of my fellow home care members of Local

880 and SEIU, I thank you for this opportunity to testify before the

Subcommittee. I find it ironic that so many health care workers

like myself do not have health insurance. We especially appreciate

Senator Durbin’s interest in the issue of health care for home care

workers, and his efforts to address the problem of uninsured caregivers.

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The Caregivers’ Access to Health Insurance Act brings much

needed assistance to home care workers and other caregivers.

SEIU represents 185,000 home care workers throughout the United

States, and Canada, including 13,000 in Illinois. Home care workers provide essential services to people with disabilities of all ages.

I want to tell you something very personal about me and my client, some of the things I do to assist him. My client is 48 years

old. He cannot tie his shoes. He cannot write his name. He cannot

make up a bed. He cannot cook for himself. So I cook for him. I

do his banking for him. I take him to the grocery store, him and

his mother—his mother is 82 years-old. I take her to the store,

also, and I also take them to the doctor. I also go and get their prescriptions. I go and—whatever they might need for clothing—I go

and assist them. Whatever programs she might need to go to public

aid, I take them there. I cook all of his meals. I iron all of his

clothes.

I was thinking that, with all the things I do—he is the only one.

He is happy. He appreciates me. I turn on music for him and I say,

‘‘Come on, Clarence, let’s dance.’’ We have fun. We dance. I say,

‘‘Come on, let’s go for a walk.’’ He does not get out to do exercise,

so I walk him around the block. We will walk around to the corner

store, so I can get him to be out in the sunshine. He likes to eat.

He always offers me his food. ‘‘Do you want some of this? Do you

what some of that?’’ He asked me once, playing with me, he said,

‘‘What is your telephone number?’’ I said, ‘‘Are you going to call

me?’’ He said, ‘‘No.’’ I said, ‘‘Well, I am not going to give it to you.’’

We have a good relationship.

I love my job and I love what I do. I am almost like a poster child

for home health care. I love my job sincerely and my client loves

me. Every day, it makes it worthwhile just to come to see him

smile and have him say, ‘‘Where are we going to go? Where are we

going to go?’’ I love it when he tells me he wants to go. He loves

to ride. He loves to get out in the sunshine.

But, recently, I was sick. I have been sick for 4 years, and I have

been doing this for 4 years and I did not have health insurance.

I have three daughters. I have a husband and my husband’s job

closed down. It moved to Atlanta. So I am the only breadwinner

right now. So on my $7 an hour—I work 7 days a week, 7 hours

a day, because he needs that kind of care and my family needs that

kind of care. I have to be the sole breadwinner at this particular

time, and what I like is that even though I went 4 years without

medical care and attention, I was a trooper. No matter how sick

I was feeling, I said I just have a cold—I said I would just take

the medication, I will be OK. I developed coughing real bad.

Finally, I got so sick that I had no choice but to go to the doctor,

to the emergency room. I found that I was diagnosed with asthma,

severe asthma, severe bronchitis and sinuses. In my client’s house,

to get to his bedroom, it is 16 steps going up. To get to the basement, it is 12 steps going down. So I am up and down these stairs

all day long. If anybody ever had a problem with breathing and

going up and down stairs—because when I mop the kitchen, the

things I need to clean the kitchen with, the floors with, they are

kept downstairs. When I wash clothes, they are downstairs. Upstairs needs to be vacuumed. The beds need to be made. On the

17

other floor, we have to cook dinner. So I am up and down and in

all parts of the house.

Medical Care is so important, I cannot afford it. I need it, but

I cannot afford it. With my job that I do, I cannot even take time

to go to the doctor. I have medicine, but when I do go to the county

hospital, I still have to pay. When I get a prescription, I have to

wait 7 days and I hope I do not have an asthma attack. Without

the medication, I cannot do my job wholeheartedly, happily, without being worried. It brings stress to do this job without the proper

medication. But with the medication, I am happy. I am alert. I am

fun. I want him to have fun. I enjoy doing my job.

Sometimes with my family, they miss me with these hours. People say, ‘‘Do something else,’’ but I love my job. When you love

what you are doing—why should I quit my job when I love taking

care of people with disabilities? If it is not me, it would be someone

else. We cannot provide health care—health care is available.

There are solutions and they are available, and through this program, I believe that we can do this. Thank you.

Senator DURBIN. Thank you. Ms. Bell and Ms. Sims, I think in

your testimony you put a face on the uninsured people in America,

your children and you personally and your family, uninsured. I

think many people mistakenly believe that those who are uninsured just sit at home and do not do anything. You get up and go

to work every day, tough jobs, that a lot of people would not do,

and you do and do well.

Hope School, I know it started off as a facility for children who

were blind and had some other major handicap, and I know it now

involves a lot of other disabilities. That is hard work. Ms. Bell, as

you tell the story about your personal dedication, Clarence is lucky

to have somebody like you. So is his mother, and we are to be

thinking about this as we put this issue in perspective.

When I first started looking at this, Ms. Hayward, I thought to

myself that it would be so simple just to mandate health insurance

coverage and to say you have to provide health insurance coverage

for daycare workers, and people like that. But you know what that

is going to do, it is going to raise the cost of daycare, and families

are already struggling to pay for daycare. So I thought to myself

why don’t you create categories of people who are so important to

us, who are really irreplaceable, and say these people deserve to

have health insurance. Rhode Island made that decision. I ask you,

as a result of it—in your testimony, you have alluded to some of

the statistics, but over the last—has it been 4 years since it has

been in place?

Ms. HAYWARD. Yes, since 1997, Senator.

Senator DURBIN. What about the turnover rate now in some of

the covered jobs that now have health insurance through Rhode Island’s own program?

Ms. HAYWARD. We believe that the turnover rate has decreased;

however, we attempted a survey as part of our market-rate survey

which we do every 2 years to determine what the reimbursement

rate will be for child care providers, and the data was really very

unclear. I am not sure whether we asked the questions in the

wrong way, whether the questions were misleading or confusing,

but the data that we got back was not helpful to us. We are in the

18

process of trying to revise that and look at it again, but clearly

what we are seeing is—anecdotally, we are hearing from folks that

they are able to retain employees longer. By participating in paying

the premium, we are freeing up dollars within those centers that

can go to increased wages, which also helps to stabilize and fortify

the industry. So we think that there are a number of ways that we

have gone at it, and we are hopeful that this fall we will have some

data that will support it more clearly.

Senator DURBIN. Does Rhode Island pay for its program through

general revenues?

Ms. HAYWARD. Yes, it does.

Senator DURBIN. Do you provide Medicaid coverage or is it private coverage?

Ms. HAYWARD. In Rhode Island, for families and children and for

child care providers, that is one and the same. Our Medicaid managed care program, RIte Care, purchases health insurance through

the three available commercial plans available in Rhode Island. So

our Medicaid beneficiaries, as well as the family child care providers, will have an insurance card just like you or I would.

Senator DURBIN. Does it cover dependents, as well as the workers?

Ms. HAYWARD. Yes, it does.

Senator DURBIN. That is quite a plus; isn’t it, Ms. Sims? Let me

ask you about the type of coverage for these workers as compared

to say, State workers, State employees.

Ms. HAYWARD. The coverage is comparable. The coverage is comparable.

Senator DURBIN. In terms of cost and cost containment, can you

tell me what Rhode Island is doing to deal with that?

Ms. HAYWARD. Well, we have two goals; one is to continue to decrease the number of uninsured in the State; Rhode Island has

among the lowest. In some surveys, it is indicated that we are the

lowest rate of uninsured in the country. We have a commitment to

continuing to lower that. There really are two ways to go at it. One

is to do it through a Medicaid-like buy-in or to do it through employer-based insurance, and we think there has to be a balance. To

the extent that we are able to leave people in employer-based insurance, we think that is a better choice. For our family providers,

that was not an option, but for our center-based providers, it is an

option and it really falls into the philosophy that we have, that we

need to be able to stabilize that market, as well, and we are not

doing that if we are pulling folks out of it.

Senator DURBIN. Ms. Mintz, what is the average age of family

caregivers?

Ms. MINTZ. The average age of a caregiver who is caring for

somebody over the age of 50, is 47, so very much in the span of

work years.

Senator DURBIN. Is that age going up or can you tell me if there

is any trend line, in terms of these family caregivers?

Ms. MINTZ. I do not know so much if there is a trend of the age

of caregivers necessarily going up across the board, but because

people are living longer and people over 85 are the fastest-growing

segment of our population, you have situations now where we have

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the old caring for the even older. In situations where you will have

spousal-caregiving, in that sense, the age of caregivers is going up.

Senator DURBIN. And I would imagine that if some of these caregivers have reached Medicare eligibility age, they have coverage.

Ms. MINTZ. Yes.

Senator DURBIN. So it is basically those who are pre-Medicare

eligibility that we are focusing on.

Ms. MINTZ. Yes, and what we were just finding in the information we were getting back in response to the E-mail that we sent

out, is that it is very much those people who are in the middle who

would normally be part of the workforce, who had to leave the

workforce or cut back, or who are in part-time jobs in the first

place and are not getting the insurance at all. That really is largely

where those gaps are for the folks who often are forgotten because

they are not eligible for any particular programs.

Senator DURBIN. Thank you.

Mr. Stearns, one of the things that I found interesting when I

met with the disabled community in Springfield was how vulnerable people with disabilities are when they absolutely, positively

have to have a caregiver. They literally get out of bed in the morning to be able to do the basic things we take for granted every single day, and with that caregiver, for many of them who could kind

of unlock the door to their lives, they can come through that door

and be very productive and do wonderful things, but they need that

helping hand to get started.

They told me time and again about how tough it was to find that

person. They are paying very little because it is an expensive undertaking. They are vulnerable many times to those who do not

treat them well or steal from them or whatever it happens to be.

I cannot imagine that feeling of vulnerability where you are literately dependent on somebody being at the door at the right moment so your day can start, and then your life is in their hands

the entire day. I thought about that as I reflected on this bill and

I thought all the more reason for us to really reward people who

are personal caregivers to the disabled, so that they will stick with

it. When I hear Ms. Bell’s story about her commitment to her client, that is the sort of thing you are looking for; is it not?

Mr. STEARNS. That is absolutely true, Mr. Chairman. Let me

speak from my personal experience, which goes back more years

than I care to remember, but also from the experience of the surveys we have done when we understood you were looking into this

issue, which we applaud. I cannot speak as eloquently as the individuals have here today, but I can tell you that when I was trying

to get into the educational system, I was totally dependent on that

person to help me get out of bed. If I got out of bed on my own,

I risked injury and in a couple of cases, I tried to get out of bed

on my own, did not do it terribly successfully, and ended up back

in the hospital for awhile.

You hit it exactly, Mr. Chairman. If you cannot get out of bed

in the morning, if you literately cannot go to another endeavor,

then where is your schooling that we have very correctly put a lot

of money and resources into it? Where is your employment? We

have, as you know, been very proud to have many individuals with

cerebral palsy and other disabilities working here in the U.S. SenVerDate 11-MAY-2000 15:47 Jun 28, 2002 Jkt 000000 PO 00000 Frm 00023 Fmt 6633 Sfmt 6633 75479.TXT SAFFAIRS PsN: SAFFAIRS
20

ate and the other body, the House of Representatives. Let’s assume

that the caregiver cannot get those people up in the morning. Your

constituents and you, sir, need people to show up on time. As committed as you are to the issue, they still have got to show up on

time to do the business, and you can take that employment discussion and translate it across.

So it is absolutely key, and that is what I think people miss. I

do not mean to denigrate anybody in that chain of giving care to

people with disabilities. Certainly people in the medical profession

are very important, but if the job of the personal care attendant is

so basic, as has been so eloquently stated today, that if you cannot

get that done, it does not matter the quality of health care, if you

cannot get there. It does not matter, sir, if you would come to us

and give 10 jobs on your staff to people with disabilities, if we cannot get them out of bed to show up in the morning, you cannot employ them.

Senator DURBIN. So all of the Senators, Democrats, Republicans,

who voted for the Americans With Disabilities Act and said we believe in equal opportunity, here is your first test, maybe not your

first test, but here is a test.

Mr. STEARNS. A key test, that is exactly the issue.

Senator DURBIN. Mrs. Chapman, you said during the course of

your testimony that I did not see in your printed statement—you

said you thought this was the singlemost important thing, health

insurance, when it came to home care.

Mr. CHAPMAN. You are right, Senator. What I have seen with the

staff that has worked for me and with other administrators in

other agencies, I feel that we cannot continue to provide service

and we cannot provide access to care if we do not have the workers.

If my workers are getting up at 5 in the morning to put somebody

on the school bus and then turn it around because they cannot

make enough money to provide just the basic needs to meet their

families, let alone health insurance, and they are working 12-hour

days or 10-hour days, and they can go to McDonald’s and become

a grill cook and make $10.50 an hour with benefits, what is the incentive, other than the dedication to taking care of people, there for

them to continue to work in my field? To me, we talk about the crisis with recruiting home care nurses and the crisis in nursing, yes,

that is absolutely true, but those nurses cannot even do their jobs

if we do not have the support of the support people. So without an

adequate livable wage and adequate health insurance to keep these

workers healthy and on the job, there is no way I can continue to

do my job.

Senator DURBIN. This is our second hearing since there has been

a changeover in the Senate. The first hearing was on the nursing

shortage. The premise of my hearing was what is going to happen

to America when we ring for a nurse and no one shows up?

Mr. CHAPMAN. What is going to happen to our people at home

when they ring for a home health aide to get them out of bed and

no one shows up?

Senator DURBIN. This hearing complements that first hearing.

We have got to be honest about this. If we want the kind of quality

care for ourselves and the people we love, then we have to deal

with it. Who had the quote in here from Rosalyn Carter? Was that

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in your testimony? Someone had a quote in here about who caregivers are.

Ms. MINTZ. That was in mine.

Senator DURBIN. Excellent. I recommend it to those who would

look at the transcript here. If we are not caregivers today, we may

be needing care tomorrow.

Ms. MINTZ. There are only four kinds of people in this world:

those who are currently caregivers; those who were caregivers;

those who will be caregivers; and those who will need care.

Senator DURBIN. Yes.

Ms. MINTZ. And I think that is very true.

Senator DURBIN. What a perspective that is. Ms. Sims, $260 a month to cover your two boys?

Ms. SIMS. That is correct.

Senator DURBIN. What is your hourly wage at Hope School?

Ms. SIMS. $12.20 an hour.

Senator DURBIN. $12.20. So after you have taken out all the de- ductions, $260 a month or a little over $3,000 a year for that

health insurance for you—that is a tough one. I can see it. As you

describe your life and dealing with emergency rooms, that really

tells the story about people without health insurance trying to cope

and trying to get by.

Ms. Bell, your situation, too, dealing with asthma, which can

really literately stop you in your tracks, in terms of whether you

can help your client, the person you are trying to help each day—

it has been a serious problem for you; has it not?

Ms. BELL. Yes, and it is very scary when you do not—I have $1,200 worth of medical bills that I still have not paid from going

to the county hospital, which the asthma—they are checking to see

if it has done any damage to my heart. I took an echocardiogram

and it cost $400. This started in December 2000, so my credit has

been ruined because it was either buy food or pay these medical

bills. I love my children, so I have to pay these bills. It is very

scary, but with the medication and with good health care, I do not

even feel like I have asthma. I run with my kids. I chase Clarence

and make him do things and up and down stairs. There is no problem, as long as you have—if you have got the right coverage of insurance, where I can see a doctor properly like I should, then it

would be no problem.

Senator DURBIN. I want to thank you all for your testimony. We

may submit some written questions. Here is what I am going to do.

I am going to make a deal with you here. I am going to tell your

story to my colleagues in the Senate. You need to help me. You

need to reach out to the Senators who represent you in your home

State and the people you represent here and let them know about

the importance of this issue. I think this is one of those issues that

can escape attention. It is never going to be on the front page of

the newspaper, and yet, it is as close to home as our children and

our parents and the people that we love. So I am going to do my

best to spread this information across the Senate and increase the

number of sponsors of this effort that I am going to be introducing

in just a few days, but I need your help and your organizations’.

I am going to start with Rhode Island because they point with

pride to what they have accomplished. I thank you for being here

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to let everyone know across the Nation who follow this hearing,

that it can happen, it can be done. This is not some over-the-rainbow idea. It has happened and it really has made a difference in

the State of Rhode Island.

For each of you, for the family caregivers, and Mr. Stearns, with

the United Cerebral Palsy, and Ms. Sims from Hope School in

Springfield, Mrs. Chapman, thank you, from Ohio, and Ms. Bell,

you will be back dancing with Clarence pretty soon, and we thank

you for coming here and making this hearing so valuable today. It

will stand adjourned.

[Whereupon, at 3:35 p.m., the Subcommittee was adjourned.]

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A P P E N D I X

PREPARED STATEMENT OF SENATOR CLELAND

I want to commend Senator Durbin and the other Subcommittee Members for conducting today’s hearing on the critical role of nurses in the Federal health care system. Military and Veterans’ Affairs (VA) nurses have played a critical role in my

life, not only as life-sustaining givers of care, but also as givers of hope. When I

meet with health care groups from Georgia and across the Nation, the increasing

need for nurses is always a part of the discussion. At the June 14 Senate Veterans’

Affairs Committee hearing on the looming nursing shortage, I emphasized an alarming statistic that the Federal health sector, employing approximately 45,000 nurses,

may be the hardest hit in the near future with an estimated 47 percent of its nursing workforce eligible for retirement by the year 2004. Current and anticipated

nursing vacancies in all health care settings are attributed to a variety of factors

including more career choices for women and worsening work place conditions with

mandatory overtime and increasing patient care workloads.

I believe today we are facing a more widespread and complex challenge with this

nursing shortage and there are no quick fixes. Key to developing needed legislative

initiatives and understanding this complex issue is the testimony we will hear today

from our panelists. It is crucial that Congress help nurses continue to take safe and

effective care of their patients and for us to assist health care facilities to recruit

and retain needed nurses as one answer, I have introduced S. 937 which is a bill

to amend title 38, United States Code, to permit members of the Armed Services

to transfer their Montgomery GI Bill educational assistance to spouses and children

and this assistance could be used for undergraduate or graduate nursing education.

I have also introduced S. 1080, the Federal Nurse Retirement Adjustment Act which

will allow Federal nurses in Federal Employee Retirement System (FERS) plans to

retain unused sick leave in retirement calculations comparable to nurses currently

in the Civil Retirement System (CRS) plan. I urge my colleagues to carefully consider the testimony of today’s witnesses as they develop initiatives to help recruit

and retain Federal nurses.

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