```

[Senate Hearing 107-158]
[From the U.S. Government Publishing Office]

                                                        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

                     U.S. GOVERNMENT PRINTING OFFICE
75-479                       WASHINGTON : 2002
________________________________________________________________________
For Sale by the Superintendent of Documents, U.S. Government Printing Office
Internet: bookstore.gpo.gov  Phone: toll free (866) 512-1800; (202) 512-1800  
Fax: (202) 512-2250 Mail: Stop SSOP, Washington, DC 20402-0001

                   COMMITTEE ON GOVERNMENTAL AFFAIRS

               JOSEPH I. LIEBERMAN, Connecticut, Chairman
CARL LEVIN, Michigan                 FRED THOMPSON, Tennessee
DANIEL K. AKAKA, Hawaii              TED STEVENS, Alaska
RICHARD J. DURBIN, Illinois          SUSAN M. COLLINS, Maine
ROBERT G. TORRICELLI, New Jersey     GEORGE V. VOINOVICH, Ohio
MAX CLELAND, Georgia                 PETE V. DOMENICI, New Mexico
THOMAS R. CARPER, Delaware           THAD COCHRAN, Mississippi
JEAN CARNAHAN, Missouri              ROBERT F. BENNETT, Utah
MARK DAYTON, Minnesota               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              GEORGE V. VOINOVICH, Ohio
ROBERT G. TORRICELLI, New Jersey     TED STEVENS, Alaska
THOMAS R. CARPER, Delaware           SUSAN M. COLLINS, Maine
JEAN CARNAHAN, Missouri              PETE V. DOMENICI, New Mexico
MARK DAYTON, Minnesota               THAD COCHRAN, Mississippi
       Marianne Clifford Upton, Staff Director and Chief Counsel
               Andrew Richardson, Minority Staff Director
                     Julie L. Vincent, Chief Clerk

                            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

                     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 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 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 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.
    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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Hayward appears in the Appendix 
on page 24.
---------------------------------------------------------------------------
    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 under-served, 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 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 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 CO-FOUNDER, 
             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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Mintz appears in the Appendix on 
page 32.
---------------------------------------------------------------------------
    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 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-and-a-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 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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Stearns appears in the Appendix 
on page 37.
---------------------------------------------------------------------------
    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 people--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 full-time 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.
    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.

       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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Sims appears in the Appendix on 
page 42.
---------------------------------------------------------------------------
    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 take-home 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 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, 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 full-time 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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Chapman appears in the Appendix 
on page 45.
---------------------------------------------------------------------------
    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.
    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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Bell appears in the Appendix on 
page 53.
---------------------------------------------------------------------------
    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 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 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 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. Senate 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 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 
deductions, $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 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.]
                            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.
[GRAPHIC] [TIFF OMITTED] T5479.001

[GRAPHIC] [TIFF OMITTED] T5479.002

[GRAPHIC] [TIFF OMITTED] T5479.003

[GRAPHIC] [TIFF OMITTED] T5479.004

[GRAPHIC] [TIFF OMITTED] T5479.005

[GRAPHIC] [TIFF OMITTED] T5479.006

[GRAPHIC] [TIFF OMITTED] T5479.007

[GRAPHIC] [TIFF OMITTED] T5479.008

[GRAPHIC] [TIFF OMITTED] T5479.009

[GRAPHIC] [TIFF OMITTED] T5479.010

[GRAPHIC] [TIFF OMITTED] T5479.011

[GRAPHIC] [TIFF OMITTED] T5479.012

[GRAPHIC] [TIFF OMITTED] T5479.013

[GRAPHIC] [TIFF OMITTED] T5479.014

[GRAPHIC] [TIFF OMITTED] T5479.015

[GRAPHIC] [TIFF OMITTED] T5479.016

[GRAPHIC] [TIFF OMITTED] T5479.017

[GRAPHIC] [TIFF OMITTED] T5479.018

[GRAPHIC] [TIFF OMITTED] T5479.019

[GRAPHIC] [TIFF OMITTED] T5479.020

[GRAPHIC] [TIFF OMITTED] T5479.021

[GRAPHIC] [TIFF OMITTED] T5479.022

[GRAPHIC] [TIFF OMITTED] T5479.023

[GRAPHIC] [TIFF OMITTED] T5479.024

[GRAPHIC] [TIFF OMITTED] T5479.025

[GRAPHIC] [TIFF OMITTED] T5479.026

[GRAPHIC] [TIFF OMITTED] T5479.027

[GRAPHIC] [TIFF OMITTED] T5479.028

[GRAPHIC] [TIFF OMITTED] T5479.029

[GRAPHIC] [TIFF OMITTED] T5479.030

[GRAPHIC] [TIFF OMITTED] T5479.031

[GRAPHIC] [TIFF OMITTED] T5479.032

[GRAPHIC] [TIFF OMITTED] T5479.033

[GRAPHIC] [TIFF OMITTED] T5479.034

[GRAPHIC] [TIFF OMITTED] T5479.035

                                   - 

```