[Congressional Record (Bound Edition), Volume 152 (2006), Part 17]
[House]
[Pages 22526-22531]
[From the U.S. Government Publishing Office, www.gpo.gov]




                   LIFESPAN RESPITE CARE ACT OF 2006

  Mr. DEAL of Georgia. Mr. Speaker, I move to suspend the rules and 
pass the bill (H.R. 3248) 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, as amended.
  The Clerk read as follows:

                               H.R. 3248

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Lifespan Respite Care Act of 
     2006''.

     SEC. 2. LIFESPAN RESPITE CARE.

       The Public Health Service Act (42 U.S.C. 201 et seq.) is 
     amended by adding at the end the following:

                  ``TITLE XXIX--LIFESPAN RESPITE CARE

     ``SEC. 2901. DEFINITIONS.

       ``In this title:
       ``(1) Adult with a special need.--The term `adult with a 
     special need' means a person 18 years of age or older who 
     requires care or supervision to--
       ``(A) meet the person's basic needs;
       ``(B) prevent physical self-injury or injury to others; or
       ``(C) avoid placement in an institutional facility.
       ``(2) Aging and disability resource center.--The term 
     `aging and disability resource center' means an entity 
     administering a program established by the State, as part of 
     the State's system of long-term care, to provide a 
     coordinated system for providing--
       ``(A) comprehensive information on available public and 
     private long-term care programs, options, and resources;
       ``(B) personal counseling to assist individuals in 
     assessing their existing or anticipated long-term care needs, 
     and developing and implementing a plan for long-term care 
     designed to meet their specific needs and circumstances; and
       ``(C) consumer access to the range of publicly supported 
     long-term care programs for which consumers may be eligible, 
     by serving as a convenient point of entry for such programs.
       ``(3) Child with a special need.--The term `child with a 
     special need' means an individual less than 18 years of age 
     who requires care or supervision beyond that required of 
     children generally to--
       ``(A) meet the child's basic needs; or
       ``(B) prevent physical injury, self-injury, or injury to 
     others.
       ``(4) Eligible state agency.--The term `eligible State 
     agency' means a State agency that--
       ``(A) administers the State's program under the Older 
     Americans Act of 1965, administers the State's program under 
     title XIX of the Social Security Act, or is designated by the 
     Governor of such State to administer the State's programs 
     under this title;
       ``(B) is an aging and disability resource center;
       ``(C) works in collaboration with a public or private 
     nonprofit statewide respite care coalition or organization; 
     and
       ``(D) demonstrates--
       ``(i) an ability to work with other State and community-
     based agencies;
       ``(ii) an understanding of respite care and family 
     caregiver issues across all age groups, disabilities, and 
     chronic conditions; and
       ``(iii) the capacity to ensure meaningful involvement of 
     family members, family caregivers, and care recipients.
       ``(5) Family caregiver.--The term `family caregiver' means 
     an unpaid family member, a foster parent, or another unpaid 
     adult, who provides in-home monitoring, management, 
     supervision, or treatment of a child or adult with a special 
     need.
       ``(6) Lifespan respite care.--The term `lifespan respite 
     care' means a coordinated system of accessible, community-
     based respite care services for family caregivers of children 
     or adults with special needs.
       ``(7) Respite care.--The term `respite care' means planned 
     or emergency care provided to a child or adult with a special 
     need in order to provide temporary relief to the family 
     caregiver of that child or adult.
       ``(8) State.--The term `State' means any of the several 
     States, the District of Columbia, the Virgin Islands of the 
     United States, the Commonwealth of Puerto Rico, Guam, 
     American Samoa, and the Commonwealth of the Northern Mariana 
     Islands.

     ``SEC. 2902. LIFESPAN RESPITE CARE GRANTS AND COOPERATIVE 
                   AGREEMENTS.

       ``(a) Purposes.--The purposes of this section are--
       ``(1) to expand and enhance respite care services to family 
     caregivers;
       ``(2) to improve the statewide dissemination and 
     coordination of respite care; and
       ``(3) to provide, supplement, or improve access and quality 
     of respite care services to family caregivers, thereby 
     reducing family caregiver strain.
       ``(b) Authorization.--Subject to subsection (e), the 
     Secretary is authorized to award grants or cooperative 
     agreements for the purposes described in subsection (a) to 
     eligible State agencies for which an application is submitted 
     pursuant to subsection (d).
       ``(c) Federal Lifespan Approach.--In carrying out this 
     section, the Secretary shall work in cooperation with the 
     National Family Caregiver Support Program of the 
     Administration on Aging and other respite care programs 
     within the Department of Health and Human Services to ensure 
     coordination of respite care services for family caregivers 
     of children and adults with special needs.
       ``(d) Application.--
       ``(1) Submission.--Each Governor desiring the eligible 
     State agency of his or her State to receive a grant or 
     cooperative agreement under this section shall submit an 
     application on behalf of such agency to the Secretary at such 
     time, in such manner, and containing such information as the 
     Secretary shall require.
       ``(2) Contents.--Each application submitted under this 
     section shall include--
       ``(A) a description of the eligible State agency's--
       ``(i) ability to work with other State and community-based 
     agencies;

[[Page 22527]]

       ``(ii) understanding of respite care and family caregiver 
     issues across all age groups, disabilities, and chronic 
     conditions; and
       ``(iii) capacity to ensure meaningful involvement of family 
     members, family caregivers, and care recipients;
       ``(B) with respect to the population of family caregivers 
     to whom respite care information or services will be provided 
     or for whom respite care workers and volunteers will be 
     recruited and trained, a description of--
       ``(i) the population of family caregivers;
       ``(ii) the extent and nature of the respite care needs of 
     that population;
       ``(iii) existing respite care services for that population, 
     including numbers of family caregivers being served and 
     extent of unmet need;
       ``(iv) existing methods or systems to coordinate respite 
     care information and services to the population at the State 
     and local level and extent of unmet need;
       ``(v) how respite care information dissemination and 
     coordination, respite care services, respite care worker and 
     volunteer recruitment and training programs, or training 
     programs for family caregivers that assist such family 
     caregivers in making informed decisions about respite care 
     services will be provided using grant or cooperative 
     agreement funds;
       ``(vi) a plan for administration, collaboration, and 
     coordination of the proposed respite care activities with 
     other related services or programs offered by public or 
     private, nonprofit entities, including area agencies on 
     aging;
       ``(vii) how the population, including family caregivers, 
     care recipients, and relevant public or private agencies, 
     will participate in the planning and implementation of the 
     proposed respite care activities;
       ``(viii) how the proposed respite care activities will make 
     use, to the maximum extent feasible, of other Federal, State, 
     and local funds, programs, contributions, other forms of 
     reimbursements, personnel, and facilities;
       ``(ix) respite care services available to family caregivers 
     in the eligible State agency's State or locality, including 
     unmet needs and how the eligible State agency's plan for use 
     of funds will improve the coordination and distribution of 
     respite care services for family caregivers of children and 
     adults with special needs;
       ``(x) the criteria used to identify family caregivers 
     eligible for respite care services;
       ``(xi) how the quality and safety of any respite care 
     services provided will be monitored, including methods to 
     ensure that respite care workers and volunteers are 
     appropriately screened and possess the necessary skills to 
     care for the needs of the care recipient in the absence of 
     the family caregiver; and
       ``(xii) the results expected from proposed respite care 
     activities and the procedures to be used for evaluating those 
     results;
       ``(C) assurances that, where appropriate, the eligible 
     State agency will have a system for maintaining the 
     confidentiality of care recipient and family caregiver 
     records; and
       ``(D) a memorandum of agreement regarding the joint 
     responsibility for the eligible State agency's lifespan 
     respite program between--
       ``(i) the eligible State agency; and
       ``(ii) a public or private nonprofit statewide respite 
     coalition or organization.
       ``(e) Priority; Considerations.--When awarding grants or 
     cooperative agreements under this section, the Secretary 
     shall--
       ``(1) give priority to eligible State agencies that the 
     Secretary determines show the greatest likelihood of 
     implementing or enhancing lifespan respite care statewide; 
     and
       ``(2) give consideration to eligible State agencies that 
     are building or enhancing the capacity of their long-term 
     care systems to respond to the comprehensive needs, including 
     respite care needs, of their residents.
       ``(f) Use of Grant or Cooperative Agreement Funds.--
       ``(1) In general.--
       ``(A) Required uses of funds.--Each eligible State agency 
     awarded a grant or cooperative agreement under this section 
     shall use all or part of the funds--
       ``(i) to develop or enhance lifespan respite care at the 
     State and local levels;
       ``(ii) to provide respite care services for family 
     caregivers caring for children or adults;
       ``(iii) to train and recruit respite care workers and 
     volunteers;
       ``(iv) to provide information to caregivers about available 
     respite and support services; and
       ``(v) to assist caregivers in gaining access to such 
     services.
       ``(B) Optional uses of funds.--Each eligible State agency 
     awarded a grant or cooperative agreement under this section 
     may use part of the funds for--
       ``(i) training programs for family caregivers to assist 
     such family caregivers in making informed decisions about 
     respite care services;
       ``(ii) other services essential to the provision of respite 
     care as the Secretary may specify; or
       ``(iii) training and education for new caregivers.
       ``(2) Subcontracts.--Each eligible State agency awarded a 
     grant or cooperative agreement under this section may carry 
     out the activities described in paragraph (1) directly or by 
     grant to, or contract with, public or private entities.
       ``(3) Matching funds.--
       ``(A) In general.--With respect to the costs of the 
     activities to be carried out under paragraph (1), a condition 
     for the receipt of a grant or cooperative agreement under 
     this section is that the eligible State agency agrees to make 
     available (directly or through donations from public or 
     private entities) non-Federal contributions toward such costs 
     in an amount that is not less than 25 percent of such costs.
       ``(B) Determination of amount contributed.--Non-Federal 
     contributions required by subparagraph (A) may be in cash or 
     in kind, fairly evaluated, including plant, equipment, or 
     services. Amounts provided by the Federal Government, or 
     services assisted or subsidized to any significant extent by 
     the Federal Government, may not be included in determining 
     the amount of such non-Federal contributions.
       ``(g) Term of Grants or Cooperative Agreements.--
       ``(1) In general.--The Secretary shall award grants or 
     cooperative agreements under this section for terms that do 
     not exceed 5 years.
       ``(2) Renewal.--The Secretary may renew a grant or 
     cooperative agreement under this section at the end of the 
     term of the grant or cooperative agreement determined under 
     paragraph (1).
       ``(h) Maintenance of Effort.--Funds made available under 
     this section shall be used to supplement and not supplant 
     other Federal, State, and local funds available for respite 
     care services.

     ``SEC. 2903. NATIONAL LIFESPAN RESPITE RESOURCE CENTER.

       ``(a) Establishment.--The Secretary may award a grant or 
     cooperative agreement to a public or private nonprofit entity 
     to establish a National Resource Center on Lifespan Respite 
     Care (referred to in this section as the `center').
       ``(b) Purposes of the Center.--The center shall--
       ``(1) maintain a national database on lifespan respite 
     care;
       ``(2) provide training and technical assistance to State, 
     community, and nonprofit respite care programs; and
       ``(3) provide information, referral, and educational 
     programs to the public on lifespan respite care.

     ``SEC. 2904. REPORT.

       ``Not later than January 1, 2009, the Secretary shall 
     report to the Congress on the activities undertaken under 
     this title. Such report shall evaluate--
       ``(1) the number of States that have lifespan respite care 
     programs;
       ``(2) the demographics of the caregivers receiving respite 
     care services through grants or cooperative agreements under 
     this title; and
       ``(3) the effectiveness of entities receiving grants or 
     cooperative agreements under this title.

     ``SEC. 2905. AUTHORIZATION OF APPROPRIATIONS.

       ``There are authorized to be appropriated to carry out this 
     title--
       ``(1) $30,000,000 for fiscal year 2007;
       ``(2) $40,000,000 for fiscal year 2008;
       ``(3) $53,330,000 for fiscal year 2009;
       ``(4) $71,110,000 for fiscal year 2010; and
       ``(5) $94,810,000 for fiscal year 2011.''.

     SEC. 3. GAO REPORT ON LIFESPAN RESPITE CARE PROGRAMS.

       Not later than January 1, 2011,  the Comptroller General of 
     the United States shall conduct an evaluation and submit a 
     report to the Congress on the effectiveness of lifespan 
     respite programs, including an analysis of cost benefits and 
     improved efficiency in service delivery.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Georgia (Mr. Deal) and the gentleman from New Jersey (Mr. Pallone) each 
will control 20 minutes.
  The Chair recognizes the gentleman from Georgia.


                             General Leave

  Mr. DEAL of Georgia. Mr. Speaker, I would ask that all Members have 5 
legislative days within which to revise and extend their remarks and 
insert extraneous material on the bill.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Georgia?
  There was no objection.
  Mr. DEAL of Georgia. I yield myself as much time as I may consume.
  Mr. Speaker, I rise today in strong support of H.R. 3248, the 
Lifespan Respite Care Act of 2006. This legislation is an important 
first step in offering help to the estimated 25 million Americans 
currently caring for a sick, aged or disabled loved one at home. 
Whether it is an aged father or mother, a spouse who has suffered a 
work-related injury, or a child with a special need, almost all of us 
have either taken care of or know

[[Page 22528]]

someone who is taking care of a loved one at home.
  As an experienced caregiver for my mother and both of my wife's 
parents, I am personally aware of the benefits of at-home care. But I 
am also acutely aware that there are financial, emotional and physical 
burdens for the family caregiver that can sometimes be overwhelming. 
Respite is a caregiver focused service that allows family members to 
take a much-needed break from the daily emotional and physical stresses 
associated with caring for a loved one at home. It also allows family 
caregivers to attend to financial and practical matters that occur 
outside their roles as caregivers, such as taking time to pay bills, go 
grocery shopping or go to a doctor's appointment for themselves.
  There are many forms of respite care, including at-home visits by a 
trained professional, adult day care services or even volunteer respite 
services provided by local religious or civic organizations. While the 
demand for respite care services continues to grow at an almost 
exponential rate, many Americans today are confused by or unaware of 
the daunting array of public and private respite care options, but may 
also have difficulty understanding and navigating the complicated 
regulations and eligibility requirements for various public programs 
offering access to respite care.
  The Lifespan Respite Care Act is an important first step that will 
set up clearinghouses of information to educate consumers about respite 
care options available in their areas. It will also allow States to 
offer consumer information on the broad array of programs offering 
long-and short-term care support services. The legislation also 
provides funding to build the needed infrastructure and coordinating 
capacity at the State and local levels so that more people will have 
access to respite care, especially those in rural and underserved parts 
of the country.
  For example, this is especially important for people living in many 
areas of my congressional district in northern Georgia, where people 
must often drive long distances to access the nearest doctor, hospital 
or long-term care facility. The bill will also support family 
caregivers in their noble and compassionate efforts to keep their loved 
ones at home. Numerous studies have shown that at-home care by a loved 
one can delay or prevent placement in expensive long-term care 
facilities, such as a nursing home.
  Because the Federal Medicaid program is the primary purchaser of 
nursing home care in the United States, this informal at-home care 
saves the Federal taxpayers millions of dollars a year. Other studies 
have verified what most of us already know. People are healthier and 
happier when they can live at home. The availability of respite care 
plays an important role in enabling family caregivers to keep their 
loved ones at home and delays or avoids other much more expensive 
options.
  This legislation is only a first step in addressing the emerging 
needs of family caregivers in the United States. To solve this problem, 
we will need government, health insurance companies, long-term care and 
other health care providers and consumers all working together to find 
innovative solutions.
  At this time, I would like to acknowledge the efforts of my colleague 
and vice-chairman of the Subcommittee on Health, the gentleman from New 
Jersey (Mr. Ferguson). His passion on this issue is truly commendable, 
as are his tireless efforts to address so many health care concerns of 
importance to the American people. I would also like to thank Randy 
Pate of the Subcommittee on Health staff, and Mr. David Rosenfeld, 
formerly of our staff, for their hard work on this important 
legislation.
  Mr. Speaker, I would strongly urge my colleagues to support my bill.
  Mr. Speaker, I reserve the balance of my time.
  Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, I rise today in support of H.R. 3248, the Lifespan 
Respite Care Act of 2006, and I am glad to be a cosponsor of this 
legislation. Respite care programs are an integral part of the long-
term delivery systems for long-term care. All too often family 
caregivers provide arduous and ongoing care for aging and disabled 
loved ones. The programs contained within this legislation seek to 
provide interim relief in these situations and for those overextended 
families.
  Despite the numerous Federal programs that have the potential to fund 
respite services, there is no single coordinated caregiver friendly 
program to support the development or implementation of lifespan 
respite care services. Even where resources are available many families 
cannot find providers who are adequately trained to care for people 
with disabilities who can provide them the temporary relief that they 
desperately need.
  The Lifespan Respite Care Act of 2006 would authorize the award of 
grants and cooperative agreements to eligible State agencies to develop 
or enhance lifespan respite care programs at the State and local 
levels. These grants and cooperative agreements would provide 
assistance to programs that provide training, information, counseling 
and access to the range of publicly supported long-term care programs 
for family caregivers of children and adults with special needs.
  State agencies would work to ensure meaningful involvement of family 
members, family caregivers and care recipients. This bill would also 
establish the National Resource Center on Lifespan Respite Care to 
provide technical assistance, information referral and educational 
programs on lifespan respite care.
  Without respite and other services of support for family caregivers, 
many are forced to quit their jobs or reduce their paid employment. 
Other would-be caregivers are forced to place their relatives in 
unwanted and more costly institutional or foster care programs.
  H.R. 3248 enjoys a great deal of bipartisan support, as well as 
support from a diverse stakeholder community, including Easter Seals, 
the National Education Association, the National Mental Health 
Association and the Children's Defense Fund. I would like to thank Mr. 
Ferguson for sponsoring this legislation and urge my colleagues on both 
sides of the aisle to support this bill.
  Mr. Speaker, I reserve the balance of my time.
  Mr. DEAL of Georgia. Mr. Speaker, I am pleased to yield 10 minutes to 
the author of the legislation, the gentleman from New Jersey (Mr. 
Ferguson).
  Mr. FERGUSON. Mr. Speaker, I rise today in support of H.R. 3248, the 
Lifespan Respite Care Act. This important bipartisan legislation will 
for the first time establish a national policy to help our Nation's 50 
million family caregivers, including 900,000 New Jersey family 
caregivers who provide daily care for their loved ones with 
disabilities and chronic conditions or illnesses.
  Instead of an institutionalized setting, in-home family caregivers 
provide minute-by-minute special assistance to a loved one with a 
disability or a critical illness or a chronic condition. Mr. Speaker, 
family caregivers are remarkable people. They make extraordinary 
sacrifices to help those whom they love so dearly. I saw one such 
example firsthand almost 10 years ago when my mom was diagnosed with 
multiple myeloma. For 6 years, my dad cared for her as she battled 
cancer.
  She lived longer than any of her doctors thought she would, and since 
she went to heaven 3\1/2\ years ago, our family has looked back on 
those extra monuments we had with our mom, and we treasured them, 
knowing that it was my dad's love and care which helped to make them 
possible.
  There are tens of millions of family caregivers in this country who 
provide the same loving and compassionate care that we saw my dad 
provide for my mom near the end of her life. In our family we were 
fortunate to have a support structure of relatives and friends who were 
able to provide a break for my dad when he really needed one. That 
respite was crucial for him. For him to stay healthy himself, it 
enabled him to provide better care for my mom.

[[Page 22529]]

  But there are countless caregivers around this country who are not 
blessed with that built-in support structure, and they are desperately 
in need of a break from time to time. Because while the benefits of in-
home care can be significant for the family, compared with 
institutionalized care, the cost for the family caregiver, from 
emotional to financial, can be enormous.
  All across the country there are people like Karen Pinter of 
Hillsborough, New Jersey, providing in-home care. Karen provides round 
the clock care for her 10-year-old autistic daughter, Jessica. For Mrs. 
Pinter, respite means receiving $40 once a week from the New Jersey 
Family Support Center so that she can hire a tutor for her daughter.
  With a tutor, Karen Pinter can take a much-needed break so she can do 
simple things for herself and for her family that many of us take for 
granted, like writing out that week's grocery list or preparing dinner 
or paying bills or simply taking a break for herself.
  Respite for Eugenia and Roger Gore of Scotch Plains, New Jersey, 
helps their family to make ends meet. Their family uses respite hours 
so their 13-year-old autistic son can attend an extended-day program at 
school so Mrs. Gore can work outside the home to help further support 
their family.
  Now the Gore family uses their respite funds to enable Mrs. Gore to 
work outside the home. This helps alleviate a financial burden, but it 
does not allow their family the break that respite oftentimes would. 
Even as they applied to the State of New Jersey for support for some 
respite hours on a weekend so they could get that much-needed break for 
grocery shopping or to attend one of their other son's athletic games, 
unfortunately they were denied.
  For caregivers providing intense and exhausting care 24 hours a day, 
7 days a week, 365 days a year, the occasional short break can 
literally be a lifesaver. That is what respite care is. It is providing 
a break for caregivers.
  Mrs. Pinter has told me that caring for a special needs child can be 
very joyful. It can also be very challenging, and she is right. Family 
caregivers suffer poor health and even higher mortality rates than non-
family caregivers, according to some recent studies. For example, 
mortality rates among older caregivers are 63 percent higher than among 
older non-caregivers. Two-thirds of family caregivers report physical 
or mental health problems that are linked to their care giving.
  Nationally, there is no coordinated approach that exists among 
different levels of government or advocacy groups to help those who 
need respite care to find it and to qualify for it and to pay for it.

                              {time}  1215

  The problem is that respite care is in short supply or it doesn't 
exist at all in some areas. This legislation that we are considering 
today would change that. The Lifespan Respite Care Act would improve 
coordination and access for respite care and recruit and train respite 
care providers. With $289 million over the next 5 years, the bill would 
also aid family caregivers in finding and paying for respite services 
through competitive grants to States to make quality respite care 
available and accessible, regardless of age or disability or family 
situation.
  National and grassroots advocacy groups, including the AARP, 
Alzheimer's Association, Epilepsy Foundation, National Multiple 
Sclerosis Society, Paralyzed Veterans of America, The Arc of the United 
States, and United Cerebral Palsy, they all support this legislation.
  Why does this legislative effort have such strong support from such 
reputable organizations and many others? Because we know respite care 
works. Respite care improves the health and well-being of caregivers 
and reduces the risk of abuse or neglect. Importantly, it also delays 
or even avoids more costly hospitalizations or placements in nursing 
homes or foster care.
  Mr. Speaker, for over 2 years I have been working tirelessly with 
many of our colleagues on the Energy and Commerce Committee on both 
sides of the aisle to bring this bill to the floor. I want to thank 
Chairman Barton for his support and the ranking member of our 
committee, Mr. Dingell. I want to offer a special word of thanks to 
Chairman Nathan Deal for his support of this bill. I know his heart is 
very close to this effort. I want to thank the ranking member, Mr. 
Pallone, as well for his strong support of this legislation.
  I also want to thank the over 180 national and State and local 
organizations who, under the direction of the National Respite 
Coalition and its chair, Jill Kagan, who is here in our Chamber today 
with us, we have worked tirelessly on behalf of the Nation's family 
caregivers on this issue. I want to thank Tom Fussaro from our staff in 
our office, and Eric Joyce from the Family Resource Network and the 
Epilepsy Foundation of New Jersey. And I particularly want to thank Mr. 
Langevin, the gentleman from Rhode Island, who has been such a strong 
supporter and my partner in this legislation all along the way.
  Finally, I want to thank my dad, who has provided our family and many 
others with a remarkable example of the loving care that a family 
caregiver can provide.
  Providing relief to our Nation's family caregivers is long overdue, 
and I urge my colleagues to support this legislation. Today's action by 
this House will represent not only an important victory for family 
caregivers nationwide but also sends America's caregivers a very clear 
message: Your selfless sacrifice is appreciated, and help is on the 
way.
  Mr. PALLONE. Mr. Speaker, I yield 4 minutes to the gentleman from 
Rhode Island (Mr. Langevin).
  Mr. LANGEVIN. Mr. Speaker, I thank the gentleman for yielding.
  Mr. Speaker, I want to thank the gentleman from New Jersey (Mr. 
Ferguson), my partner in this effort, for his leadership on this 
exceptional bill.
  Mr. Speaker, it is with great enthusiasm that I voice my strong 
support for the Lifespan Respite Care Act. For more than 4 years, I 
have worked to pass a bill that would ease the burden of responsibility 
on family caregivers.
  I particularly want to acknowledge the hard work of so many 
advocates, organizations and individuals who worked with me to get this 
bill to where it is today. In particular I want to thank the chairman 
of the subcommittee, and I also want to thank Jill Kagan of the 
National Respite Coalition for her tireless efforts over many, many 
years.
  Mr. Speaker, an estimated 26 million Americans are currently caring 
for an adult family member who is chronically ill or disabled. 
Additionally, an estimated 18 million children have chronic physical, 
developmental, behavioral or emotional conditions that place 
significant demands on their parents. Family caregivers live in all of 
our communities and they are often silent heroes, ensuring family 
stability and helping those who struggle with disease or disability to 
avoid more costly institutional placements.
  While voluntary care is personally rewarding, it can result in 
substantial emotional, physical and financial strain on the caregiver. 
When one family member is caring for another, it doesn't mean that the 
other responsibilities of the family simply stop. Children still need 
to be brought to school, food shopping still needs to be done, doctors 
appointments still need to be made and kept, particularly when it 
involves the caregiver themselves.
  Mr. Speaker, they need to know that they are not alone and they need 
to know where to turn when the pressures of their situation become too 
much for them to bear. Respite care services relieve caregivers from 
daily care giving tasks on a temporary or even long-term basis.
  Many lifespan respite programs are already in place at State and 
local levels, providing invaluable services to the families of people 
with chronic disease or disability. Yet in too many situations, 
caregivers simply don't know how to find information about available 
respite care and access to these services. In other cases, respite care 
is simply unavailable to those who need it.

[[Page 22530]]

  I originally introduced the Lifespan Respite Care Act in the 107th 
Congress, working with the National Respite Coalition to craft a bill 
that would assist States and local organizations in identifying and 
filling the gaps in their systems. While I do wish we could have 
addressed this important issue sooner, I am grateful to Representative 
Ferguson for his leadership in ensuring that this bill came to the 
House floor. By passing this legislation and committing to build upon 
successful existing programs, we can make a powerful statement to so 
many Americans who are silently struggling right now. It is a statement 
of gratitude for their many hours of work and a statement of support 
for when the challenges become too daunting.
  Mr. Speaker, I thank the congressional leadership for their hard work 
in moving this bill forward and bringing it to the floor today, and I 
urge all of my colleagues to vote in favor of the Lifespan Respite Care 
Act. To the people at home, help is on the way.
  Mr. FERGUSON. Mr. Speaker, today I rise in support of H.R. 3248, the 
Lifespan Respite Care Act. For over 2 years I have been working 
diligently with many of my colleagues on the Energy and Commerce 
Committee to bring this bill to the floor. Over 180 national, State and 
local organizations under the direction of the National Respite 
Coalition have worked tirelessly on behalf of the Nation's family 
caregivers to help us get to this point. This legislation will for the 
first time establish respite as a policy priority for the Nation's 
estimated 50 million family caregivers, who daily provide care for 
their loved ones with disabling or chronic conditions or illnesses.
  Most caregivers freely and willingly provide this care out of love 
and commitment, but often at great cost to themselves physically, 
emotionally, and financially. One in five caregivers report that they 
are in fair or poor health; 43 percent report having a chronic health 
condition that requires ongoing medical care, putting themselves at 
great risk and jeopardizing their ability to provide continued care to 
their dependent loved ones. An estimated 46 percent to 59 percent of 
family caregivers are clinically depressed. A recent medical study 
found that older caregivers who were providing care for an elderly 
individual with a disability and experiencing caregiver strain had 
mortality rates that were 63 percent higher than non-caregiving 
controls.
  Caregivers are stretched thin in others ways as well, often with lost 
income and multiple family responsibilities. Nearly half of 
caregivers--48 percent--providing care to child, adult or elderly 
family members who have chronic or disabling conditions, have other 
children under age 18. Forty-two percent have family incomes below 200 
percent of poverty compared to 34 percent of women without family 
caregiving responsibilities. While most caregivers are employed, many 
are forced to make extreme financial sacrifices in order to continue to 
provide care. In an Iowa survey of parents of children with 
disabilities, a significant relationship was demonstrated between the 
severity of a child's disability and their parents missing more work 
hours than other employees. They also found that the lack of available 
respite care interfered with parents accepting job opportunities. Over 
the course of a caregiving ``career,'' family caregivers providing 
intense personal care can lose as much as $659,000 in wages, pensions 
and Social Security.
  The cost to U.S. businesses is even more staggering. A new study by 
Metropolitan Life Insurance Company and the National Alliance for 
Caregivers found that U.S. businesses lose from $17.1 billion to $33.6 
billion per year in lost productivity of family caregivers. Offering 
respite to working family caregivers could help improve job performance 
and employers could potentially save billions.
  Still, many barriers exist to accessing respite--including a 
reluctance to ask for help, fragmented and narrowly targeted services, 
cost, and the lack of information about how to find or choose a 
provider. Even when respite is an allowable funded service and 
resources are available to pay, a critically short supply of well-
trained respite providers may prohibit a family from making use of a 
service they so desperately need.
  Restrictive eligibility criteria also preclude many families from 
receiving services or continuing to receive services they once were 
eligible for. A New Jersey mother of a 12 year old with autism was 
denied additional respite because she was not a single mother, was not 
at poverty level, and was not exhibiting any emotional or physical 
conditions herself. As she told us, ``Do I have to endure a failed 
marriage or serious health consequences for myself or my family before 
I can qualify for respite? Respite is supposed to be a preventive 
service.''
  Respite, the most frequently requested service among family 
caregivers, offers a temporary break from the rigors of continuous care 
and helps sustain their own health and well-being. Others are able to 
tend to an emergency situation or personal health crisis. For a 
caregiver providing intense and exhausting care 24 hours a day, 7 days 
a week, 365 days a year, an occasional short break can literally be a 
life saver.
  Respite reduces stress, enhances caregiver health and well-being, and 
ensures the safety and health of the loved ones in our care. Studies 
have shown that respite care for family caregivers has resulted in 
fewer hospitalizations for the children and elderly family members in 
care. Respite has also been shown to help reduce the likelihood of 
abuse and neglect and foster care placements. Research conducted by the 
ARCH National Respite Resource Center has also shown that respite can 
help keep marriages intact and enhance family stability. Another study 
found that if respite care delays institutionalization of a person with 
Alzheimer's disease by as little as a month, $1.12 billion is saved 
annually.
  The bill authorizes $289 million over 5 years for competitive grants 
to States through Aging and Disability Resource Centers working in 
collaboration with State respite coalitions or other State 
organizations. These organizations provide or have expertise in respite 
to make respite available and accessible to family caregivers, 
regardless of age or disability, through coordinated lifespan respite 
systems. This legislation would help States maximize the use of 
existing resources and leverage new dollars by building on current 
services and systems that States already have in place. The bill would 
help support planned and emergency respite, respite workers and 
volunteer training and recruitment, caregiver training, and program 
evaluation.
  The congressional intent of the legislation is to ensure that respite 
becomes more accessible to all family caregivers in need, especially to 
those who currently do not qualify for any respite programs, who have 
no respite programs or providers in their areas, and those who do not 
know where to turn to find information on how to find and pay for 
respite. By using the broad term child or adult with special needs, 
Congress intended for the State to be highly inclusive and ensure that 
family caregivers of children and adults with developmental 
disabilities, cognitive, neurological, physical and mental health 
conditions and illnesses be equitably served. The focus for direct 
service delivery should be on those who currently may not qualify for 
respite under any State or Federal program or who have no service 
available, such as individuals under age 60 with multiple sclerosis, 
cancer, ALS, traumatic brain injury, and spinal cord injury, or 
children, adolescents or adults with behavioral, emotional or mental 
health conditions.
  Just as importantly, Congress intended that States focus immediately 
on establishing coordinated lifespan respite systems that will serve 
all age groups equally. The Secretary should ensure that State agencies 
and ADRCs use the funds provided by this act to serve all age groups 
and disability categories equally and without preference. The Aging and 
Disability Resource Centers were established by the administration with 
the intention of being one-stop shops for all individuals with long-
term care needs, making them logically a good place to administer 
lifespan respite systems, which are meant to be one-stop shops for 
respite services. However, many centers are still focusing on the 
elderly population or adults with physical disabilities and phasing in 
others at a later date. For the lifespan respite care effort to work 
most efficiently to coordinate all respite resources in the State, 
share and pool providers across age and disability groups, and to 
maximize use of current State respite resources, the ADRCs, in 
implementing this particular program, must start out with the goal of 
establishing coordinated respite systems of community-based agencies 
that will serve all age groups, including children.
  Congress also intended lifespan respite to be coordinated at the 
State level. Many of the ADRCs in the States are serving only one 
county or region in the State. However, this legislation mandates the 
establishment of state lifespan respite programs, meaning that at least 
one ADRC in the State must function statewide, at least for the 
purposes of this legislation, with the assistance of a State respite 
coalition or other State respite agency to ensure coordination of 
resources at the State level, again for maximum efficiency and cost 
savings.
  Legislative language is also clear in mandating a Federal coordinated 
approach. It directs the Secretary of Health and Human

[[Page 22531]]

Services in implanting the program to have all agencies in HHS with 
respite programs or resources work collaboratively at every level, from 
developing program guidance and awarding grants and cooperative 
agreements, to monitoring and evaluation. Congress intends the 
following agencies to work together: the Administration on Aging, the 
Administration on Developmental Disabilities, the Substance Abuse and 
Mental Health Services Administration, the Administration on Children 
and Families, including the Office on Child Abuse and Neglect, Centers 
for Disease Control's Family Caregiving Initiative, the Maternal and 
Child Health Bureau, and other appropriate public health agencies in 
the Health Resources and Services Administration.
  When considering a Federal agency to take the lead in implementation 
of this program, the Secretary of HHS should select an agency that is 
not limited in scope or mission by any age or disability category, has 
experience in serving all populations across disability and age groups, 
and will ensure that the ADRC is collaborating fully and sharing joint 
responsibility with a private or public nonprofit State respite 
coalition or organization in implementing a state lifespan respite 
program.
  Mr. Speaker, I urge my colleagues to support this legislation. With 
80 percent of long-term care provided by family caregivers, too many 
are shouldering the responsibility alone. At a minimum, they need 
respite to continue serving their loved ones at home where they belong.
  Mr. TERRY. Mr. Speaker, I rise in support of H.R. 3248, the Lifespan 
Respite Care Act. This legislation would allow States to establish 
Lifespan Respite Systems to improve respite access and quality for the 
Nation's family caregivers regardless of age or disability. I am proud 
to say that the legislation is modeled on the Nebraska Lifespan Respite 
program, which was championed legislatively in the State by my good 
friend and colleague, State Senator Dennis Byars, and has made a world 
of difference to families in our State. I am also proud to say that 
this year's national respite conference was hosted by the Lifespan 
Respite program and the Nebraska Respite Coalition.
  With passage of the Nation's second piece of State legislation on 
lifespan respite in 1999, the Nebraska Health and Human Services System 
established the Nebraska Respite Network, a statewide system for the 
coordination of respite resources that serve the lifespan. Six regional 
entities are responsible for information and referral for families who 
need access to respite, recruitment of respite providers, public 
awareness, coordinating training opportunities for providers and 
consumers, quality assurance and program evaluation. The Lifespan 
Respite Subsidy component is available to persons of all ages across 
the lifespan with special needs who are not receiving respite services 
from any other government program.
  The stress of continuous care giving can take its toll on family 
caregivers and is one of the greatest contributing factors to caregiver 
illness, marital discord that can lead to divorce, and costly out of 
home placements. Respite has been shown to alleviate these symptoms and 
even help delay or avoid foster care or nursing home placements. In 
Nebraska, a statewide survey of a broad array of caregivers who had 
been receiving respite found that 79 percent of the respondents 
reported decreased stress and 58 percent reported decreased isolation. 
In addition, one out of four families with children under 21 reported 
they were less likely to place their children in out-of-home care once 
respite services were available.
  The Nebraska program works because it is efficient and maximizes 
existing resources across all age groups and disabilities by developing 
unique partnerships with Medicaid, early intervention, area agencies on 
aging and other state and federal programs that provide or support 
respite. The regional Lifespan Respite Network Coordinator recruits 
respite providers for Medicaid, as well as for the Lifespan Respite 
Program itself. The coordinator meets with staff from HHS, 
Developmental Disabilities, the Early Intervention program, and others 
on a monthly basis in order to determine need. Respite providers are 
recruited and trained to fill the gaps, and providers list are shared. 
Most importantly, all family caregiver populations must be served 
equally with no preference for or limitation by age or disability.
  The Nebraska Lifespan Respite Program was cited as exemplary by the 
National Conference of State Legislatures as a model for States to 
emulate in implementing community-based long term care, and highlighted 
by the National Governors Association for best practices. I would urge 
the Secretary in implementing this program to base its program guidance 
on the success of the Nebraska model, especially in its ability to 
reach out to and serve all age groups, and I urge my colleagues to join 
me in supporting this important legislation today.
  Mr. PALLONE. Mr. Speaker, I urge my colleagues on both sides of the 
aisle to support this bill, and I yield back the balance of my time.
  Mr. DEAL of Georgia. Mr. Speaker, I likewise would urge the adoption 
of this resolution, and would yield back the balance of my time.
  The SPEAKER pro tempore (Mr. Bass). The question is on the motion 
offered by the gentleman from Georgia (Mr. Deal) that the House suspend 
the rules and pass the bill, H.R. 3248, as amended.
  The question was taken; and (two-thirds of those voting having 
responded in the affirmative) the rules were suspended and the bill, as 
amended, was passed.
  A motion to reconsider was laid on the table.

                          ____________________