[Congressional Record Volume 149, Number 35 (Wednesday, March 5, 2003)]
[Senate]
[Pages S3190-S3191]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mrs. CLINTON (for herself, Mr. Warner, Ms. Mikulski, Ms. 
        Snowe, Mr. Breaux, Mr. Jeffords, Mrs. Murray, Ms. Collins, Mr. 
        Kennedy, and Mr. Smith):
  S. 538. A bill to amend the Public Health Service Act to establish a 
program to assist family caregivers in accessing affordable and high-
quality respite care, and for other purposes; to the Committee on 
Health, Education, Labor, and Pensions.
  Mrs. CLINTON. Mr. President, I am proud to introduce the Lifespan 
Respite Care Act of 2003 today, a bill to establish the availability of 
respite services for our family caregivers, and to increase 
coordination of these programs so that caregivers will be better able 
to access them.

[[Page S3191]]

  As a nation, we rely on family caregivers. Twenty-six million 
Americans care for an adult family member who is ill or disabled, 
Eighteen million children have a condition that place significant 
demands on their parental caregivers. Four million Americans with 
mental retardation or a developmental disability rely on family members 
for care and supervision. If services provided by family caregivers 
were replaced by paid services, it would cost nearly $200 billion 
annually.
  But these are just numbers. Every member has a human face. Let me 
tell you about Heather Thoms-Chelsey. I met Heather last year at a 
press conference announcing the Lifespan Respite Care Act of 2002. At 
that press conference I also met Heather's then 4-year-old daughter, 
Victoria, who as Rett syndrome. Victoria is totally dependent on family 
caregivers for all basic living skills: dressing, feeding, bathing and 
toileting. She also engages in self-injurious behaviors, hand-biting, 
head banging, body slamming, hair pulling. She has to be monitored all 
the time for her protection. Heather says, ``I feel tired and exhausted 
after only less than 5 years, what will I be like in 15? Or even 20?''

  Heather is very resourceful. She has managed to find some respite 
care--164 hours per year--through her State's department of hygiene and 
mental health. She used 4 hours of her allotted time to bring a respite 
care worker with her to the press conference so she could tell us her 
story. The State allows Heather a maximum payment of $7.50 per hour for 
respite services. It is difficult to find someone who can care for a 
child with such complicated needs for that. Most of the time, Heather 
uses the respite care dollars to hire someone to help her care for 
Victoria in the home or on an outing. Very rarely does Heather actually 
get to leave the house and take a real break. Some would say Heather is 
one of the lucky ones. She actually has some respite care. Many people 
have none.
  Heather's story is repeated all across this country. Some people are 
caring for children or grandchildren with special needs and elderly 
parents at the same time. Some have called these people the 
``sandwich'' generation, sandwiched between the caregiving demands of 
children or grandchildren and the caregiving demands of elderly 
parents.
  Just because family caregiving is unpaid does not mean it is 
costless. Caregiving is certainly personally rewarding but it can also 
result in substantial emotional and physical strain and financial 
hardship. Many caregivers are exhausted and become sick themselves. 
Many give up jobs to care for loved ones, putting their own financial 
security in jeopardy.
  I believe that our country is suffering not just from a budget 
deficit, but what Mona Harrington has called, ``a care deficit.'' 
Everywhere we look--nursing, childcare, teaching, long-term care--we 
see shortages and looming crises that threaten the provision of care on 
which our children, our parents, and our families all depend. 
Caregiving is undervalued, underfinanced, and too often uncompensated. 
Family caregiving seems almost ``invisible'' in our society, perhaps 
because it is work that women perform in the home.
  It is time we recognize the heroic effort of our family caregivers 
and provide them the kind of support they need before their own health 
deteriorates. One way to do that is through respite care. Respite care 
provides a much needed break from the daily demands of caregiving for a 
few hours or a few days. These welcome breaks help protect the physical 
and mental health of the family caregiver, making it possible for the 
individual in need of care to remain in the home.
  Unfortunately, respite care is hard to find. Many caregivers do not 
know how to find information about services available. Even when 
community respite care services exist, there are often long waiting 
lists. For example, the United Cerebral Palsy Association of Nassau 
County on Long Island, provides respite service to 70 people but they 
have had a 200-person waiting list since 1995. In the same community, 
the Association for the Help of Retarded Children serves 140 
youngsters; 200 children are on their waiting list. Variety 
Preschoolers serves 150 toddlers with special needs; 120 children are 
on their waiting list. The list goes on and on.
  But, this is not a problem isolated to Long Island, NY. It is 
happening all across the America. There are more caregivers in need of 
respite care than there are respite care resources available. Part of 
the problem is funding and part of the problem is staffing.
  Children and adults with special needs require trained caregivers. 
Parents and spouses and other family caregivers are understandably 
hesitant to leave their loved ones with untrained staff. But training 
staff costs money and trained staff are going to be reluctant to work 
for as little as $7-8 an hour. Until we recognize the value of 
caregiving and pay for it as a valued service, we are going to continue 
to face shortages: shortages in respite care but also shortage in 
caregiving in a larger sense.
  We don't have enough teachers. We don't have enough nurses. We don't 
have enough childcare workers. We don't have enough trained workers to 
care for our elderly. And we don't have enough trained staff to provide 
respite care.
  It is time that we, as a nation, face this care deficit and do 
something about it.
  Today, I, along with my colleagues, Senators Warner, Mikulski, Snowe, 
Breaux, Jeffords, Murray, Collins, Kennedy, and Smith, are introducing 
the Lifespan Respite Care Act of 2003. This bill would provide over $90 
million in grants annually to develop a coordinated system of respite 
care services for family caregivers of individuals with special needs 
regardless of age. Funds could also be used to increase respite care 
services or to train respite care workers or volunteers.
  Some of my colleagues have questioned the pricetag of this 
legislation. I ask them to do the math. With 26 million caregivers of 
adults and 18 million caregivers of children with special needs, $90 
million dollars amounts to $2.05 per caregiver. If anything, we should 
be investing more in respite care, not less. Estimates place the cost 
of current family caregiving at $200 billion annually. We simply cannot 
afford to continue to ignore this issue.
  I remain committed to the concerns of family caregivers and to their 
need for respite care in particular. Together, I believe we can pass 
respite care legislation.
  But, our work cannot stop there. The need of family caregivers for 
respite care is just one important piece of a larger complex picture. I 
am asking you to join me in a longer term effort to put the care 
deficit--in childcare, in teaching, in nursing, in long-term care, as 
well as in family caregiving--on the national agenda.
                                 ______