<DOC>
[107 Senate Hearings]
[From the U.S. Government Printing Office via GPO Access]
[DOCID: f:75479.wais]
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
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75-479 WASHINGTON : 2002
________________________________________________________________________
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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.
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\1\ The prepared statement of Ms. Hayward appears in the Appendix
on page 24.
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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.
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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.
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\1\ The prepared statement of Ms. Sims appears in the Appendix on
page 42.
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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.
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\1\ The prepared statement of Ms. Chapman appears in the Appendix
on page 45.
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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.
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\1\ The prepared statement of Ms. Bell appears in the Appendix on
page 53.
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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 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
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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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