[Pages S1103-S1105]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
LIFESPAN RESPITE CARE REAUTHORIZATION ACT OF 2019
Ms. COLLINS. Mr. President, I rise today to urge passage of
bipartisan, compassionate legislation that I introduced on April 2 of
last year with my colleague from Wisconsin, Senator Baldwin, to
reauthorize the Lifespan Respite Care Program. This program provides
respite services to family members who are caring for loved ones with
special needs. Oftentimes, they are taking care of a spouse with
Alzheimer's disease or a child with several disabilities, and it is a
24/7 job. They need a break, they need help, and that is what respite
service is all about.
This is not a new program. It has long been a bipartisan priority,
and our bill is widely supported by a total of 100 leading caregiver
and respite organizations across the country.
The Senate Health, Education, Labor, and Pensions Committee reported
our bill unanimously on October 31 of last year, and we have been
working since then to secure its passage by the full Senate. It cleared
the Republican side of the aisle on December 17, but the bill has been
stalled on the other side of the aisle due to an unknown objection by
an anonymous Senator, making it very difficult to resolve. If you don't
know who has lodged the objection and you don't know what the concern
is, it becomes impossible to resolve it. Thankfully, I am pleased to
report that the objection has now been lifted, and we are poised to
pass this bill that will help our seniors caring for a spouse with
Alzheimer's or another disease, as well as parents caring for children
with disabilities.
Our bill would authorize $10 million annually for the Lifespan
Respite Care Program over the next 5 years to assist States in
establishing or enhancing statewide lifespan respite programs. Since
the program's enactment 15
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years ago, 37 States plus the District of Columbia have received grants
to increase the availability and quality of respite services. Failing
to reauthorize this program would put this funding in jeopardy.
While respite care is the No. 1 service caregivers say they need, 85
percent of our Nation's caregivers have not received any respite
services at all. Respite care has been shown to help sustain family
caregivers' health and well-being and avoid and delay out-of-home
placement for those for whom they are caring.
From families caring for children with disabilities to those caring
for older adults, the need for respite care today continues to grow.
Our bipartisan legislation would help the 45 million caregivers in our
country who provide an estimated $470 billion in uncompensated care
each year.
As a Senator representing the State with the oldest median age in our
Nation and as chairman of the Senate Aging Committee, the well-being of
our seniors and their caregivers is among my top priorities. The need
for respite care continues to outpace available resources. This program
is an attempt to provide a modest amount of Federal grant money toward
this goal.
Along with Senator Baldwin, this bipartisan bill is cosponsored by
Senators Murray, Reed, and Sinema. More than 50 national stakeholders
have signed a letter urging immediate passage of the bill, including
the ARCH National Respite Coalition, the AARP, Easterseals, The Arc,
and the Elizabeth Dole Foundation. In addition, State-based
organizations representing constituents across the country have also
signed this letter.
Mr. President, I ask unanimous consent to have this letter printed in
the Record.
There being no objection, the material was ordered to be printed in
the Record, as follows:
February 24, 2020.
Re Lifespan Respite Care Program Reauthorization Act (S.
995).
Hon. Mitch McConnell,
Majority Leader, U.S. Senate,
Washington, DC.
Hon. Lamar Alexander,
Chairman, Committee on Health, Education, Labor and Pensions,
U.S. Senate, Washington, DC.
Hon. Susan Collins,
U.S. Senate,
Washington, DC.
Hon. Chuck Schumer,
Minority Leader, U.S. Senate,
Washington, DC.
Hon. Patty Murray,
Ranking Member, Committee on Health, Education, Labor and
Pensions, U.S. Senate, Washington, DC.
Hon. Tammy Baldwin,
U.S. Senate,
Washington, DC.
Dear Leader McConnell, Leader Schumer, Chairman Alexander,
Ranking Member Murray, Senator Collins, and Senator Baldwin:
We, the undersigned national, state and local organizations
representing all ages and disabilities, are writing to offer
our support for the bipartisan Lifespan Respite Care
Reauthorization Act (S. 995) to reauthorize the Lifespan
Respite Care Program at $50 million over five years. We are
very grateful that with your strong support, the bill was
unanimously approved by the Senate Health, Education, Labor
and Pensions Committee last October, and we now urge the
Senate to take swift action to pass the bill. We also want to
acknowledge and express our deep gratitude to Rep. James
Langevin for his championing of Lifespan Respite in the House
since 2003, when he first introduced the Lifespan Respite
Care Act in Congress. He continued to lead the effort with
subsequent reauthorization bills in every Congress since
2011.
Every day, millions of American families are faced with
unexpected illness, disease, or disability. A soldier is
injured in war, a spouse develops multiple sclerosis or
Alzheimer's disease, or a child is diagnosed with a
developmental or physical disability or chronic illness.
These are but a few examples of events that can forever
change an individual's and family's trajectory.
While each situation is unique, the one thing that they
often have in common is the incredible role family caregivers
play. Forty-three million family caregivers provide a vast
majority of our nation's long-term care, permitting
individuals of all ages to remain in their communities and
avoid or delay nursing home or foster care placements.
While the benefits of family caregiving are plentiful,
caregiving can take its toll. Respite--short-term care that
offers individuals or family members temporary relief from
the daily routine and stress of providing care--is a critical
component to bolstering family stability and maintaining
family caregiver health and well-being. Respite is a
frequently requested support service among family caregivers,
but 85% of family caregivers of adults receive no respite and
the percentage is similar for parents caring for their
children with special needs.
The Lifespan Respite Care Program, though competitive
grants to states to establish or enhance statewide Lifespan
Respite systems, work to maximize existing resources and help
ensure that quality respite is available and accessible to
all family caregivers. With more than half of care recipients
under age 75 and more than one-third under age 50, Lifespan
Respite rightly recognizes caregiving as a lifespan issue and
serves families regardless of age or disability.
Though the program has been drastically underfunded since
its inception, thirty-seven states and the District of
Columbia have received grants and are engaged in impressive
work such as identifying and coordinating respite services
available through various state agencies, including veterans
caregiver services; helping unserved families pay for respite
through participant-directed voucher programs; addressing the
workforce shortage by recruiting and training respite workers
and volunteers; and building capacity by awarding mini-grants
to community and faith-based agencies for new services; and
raising awareness about respite through public education
campaigns. Enactment of the Lifespan Respite Care
Reauthorization Act is necessary to continue this excellent
momentum, better coordinate and supply respite care to our
nation's 43 million family caregivers through statewide
Lifespan Respite programs and ensure that states are able to
sustain the great work they have begun and still allow new
states to receive a grant.
We thank you for your commitment to individuals living with
disabilities, older individuals in need of assistance and
support, and the loved ones who care for them and we look
forward to continuing to work with you as the bill moves
forward. If you would like more information, please contact
Jill Kagan with the National Respite Coalition at
jkaqan@archrespite.org.
Sincerely,
National Organizations
AARP, ACCSES, Aging Life Care Association, Alliance for
Aging Research, Alliance for Retired Americans, ALS
Association, Altarum, Alzheimer's Association, Alzheimer's
Foundation of America, Alzheimer's Impact Movement, American
Academy of Pediatrics.
American Association of Caregiving Youth, American
Association on Health and Disability, American Association on
Intellectual and Developmental Disabilities, American Music
Therapy Association, American Network of Community Options
and Resources (ANCOR), American Occupational Therapy
Association, American Therapeutic Recreation Association,
Autism Society of America, Caregiver Action Network,
Caregiver Voices United, Caregivers on the Homefront.
CommunicationFIRST, Easterseals, Elizabeth Dole Foundation,
Epilepsy Foundation, Family Caregiver Alliance, National
Center on Caregiving, Family Voices, Generations United,
Lakeshore Foundation, Leading Age, Lupus Foundation of
America, National Alliance for Caregiving.
National Asian Pacific Center on Aging (NAPCA), National
Association for Home Care and Hospice, National Association
of Area Agencies on Aging (n4a), National Association of
Councils on Developmental Disabilities, National Association
of State Directors of Developmental Disabilities Services,
National Association of State Head Injury Administrators,
National Committee to Preserve Social Security and Medicare,
National Down Syndrome Congress.
National Foster Parent Association, National Multiple
Sclerosis Society, National Respite Coalition, Network of
Jewish Human Service Agencies, Paralyzed Veterans of America,
Rosalynn Carter Institute for Caregiving, Sibling Leadership
Network, The Arc of the United States, United Cerebral Palsy
National, Well Spouse Association, Women's Institute for a
Secure Retirement (WISER).
State and Local Organizations
Alabama
Alabama Governor's Office on Disability, Alabama Home
Health Services, Alabama Lifespan Respite Resource Network,
Alabama Lifespan Respite Coalition, Madison County 310 Board,
North Alabama Community Care, United Cerebral Palsy of
Alabama, United Cerebral Palsy of Huntsville and Tennessee
Valley, Inc., United Cerebral Palsy of Mobile and Central
Alabama, West Alabama Area Agency on Aging.
Arizona
Arizona Caregiver Coalition, Benevilla, Posada Life Adult
Day Services, SunTree Adult Day Health & School For Seniors.
California
Association of Caregiver Resource Centers, YMCA Childcare
Resource Service.
Florida
Florida Lifespan Respite Alliance.
Idaho
Center for the Study of Aging, Families Together, John &
Junes Mission, Inc., Idaho Caregiver Alliance, Kids !st
Disability Resource Center, Legacy Corps for Veteran and
Military Families/Jannus, Rays for Rare, Relatives As Parents
INC., Senior Connection.
Illinois
Illinois Respite Coalition.
Kansas
Kansas Lifespan Respite Coalition.
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Maryland
Maryland Respite Care Coalition.
Mississippi
Mississippi Family Caregiver Coalition.
Montana
Developmental Educational Assistance program (DEAP),
Montana Lifespan Respite Coalition.
Nebraska
Nebraska Caregiver Coalition, Nebraska Lifespan Respite
Network.
Nevada
Nevada Lifespan Respite Care Coalition.
New Jersey
The Family Resource Network, Caregivers of New Jersey.
New York
Fulton Co Office for Aging & Youth, Livable Communities
Caregiver Collaborative, Livable Communities Alzheimer's/
Dementia Collaborative, Livable Communities Intergenerational
Collaborative, New York State Caregiving and Respite
Coalition.
Oklahoma
Oklahoma Caregiver Coalition, Sooner Success.
Pennsylvania
Alliance for Community Respite Care.
South Carolina
Central Midlands Area Agency on Aging, Charleston Area
Senior Citizens, Inc., Down Syndrome Association of the
Upstate, Evolve Senior Solutions, Family Connection of South
Carolina, Federation of Families of South Carolina, Leeza's
Care Connection, Richland/Lexington Disability and Special
Needs Board, South Carolina Autism Society, South Carolina
Respite Coalition, South Carolina Spinal Cord Injury
Association, Tri-County Adult Day Services, Inc.
Tennessee
Tennessee Respite Coalition.
Washington
Washington PAVE, Washington State Respite Coalition.
Wisconsin
Greater WI Agency on Aging Resources, Inc., Inclusa,
Respite Care Association of Wisconsin.
Ms. COLLINS. Mr. President, I have shared how important it is that we
pass this legislation, the Lifespan Respite Care Reauthorization Act of
2019, without further delay, and I urge my colleagues to support the
bill.
Mr. President, as if in legislative session, I ask unanimous consent
that the Senate proceed to the immediate consideration of Calendar No.
283, S. 995.
The PRESIDING OFFICER. The clerk will report the bill by title.
The legislative clerk read as follows:
A bill (S. 995) to amend title XXIX of the Public Health
Service Act to reauthorize the program under such title
relating to lifespan respite care.
There being no objection, the Senate proceeded to consider the bill,
which had been reported from the Committee on Health, Education, Labor,
and Pensions, with an amendment to strike all after the enacting clause
and insert in lieu thereof the following:
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Lifespan Respite Care
Reauthorization Act of 2019''.
SEC. 2. REAUTHORIZATION OF LIFESPAN RESPITE CARE PROGRAM.
(a) Data Collection and Reporting.--Section 2904 of the
Public Health Service Act (42 U.S.C. 300ii-3) is amended to
read as follows:
``SEC. 2904. DATA COLLECTION AND REPORTING.
``(a) In General.--Each State agency awarded a grant or
cooperative agreement under section 2902 shall report such
data, information, and metrics as the Secretary may require
for purposes of--
``(1) evaluating State programs and activities funded
pursuant to such grant or cooperative agreement, including
any results pursuant to section 2902(d)(2)(B)(xii); and
``(2) identifying effective programs and activities funded
pursuant to section 2902.
``(b) Report.--Not later than October 1, 2023, the
Secretary shall submit a report to the Committee on Health,
Education, Labor, and Pensions of the Senate and the
Committee on Energy and Commerce of the House of
Representatives regarding the outcomes of the programs and
activities funded pursuant to section 2902, including any
effective programs and activities identified.''.
(b) Funding.--Section 2905 of the Public Health Service Act
(42 U.S.C. 300ii-4) is amended by striking ``title'' and all
that follows through the period and inserting ``title,
$10,000,000 for each of fiscal years 2020 through fiscal year
2024.''.
Ms. COLLINS. Mr. President, I ask unanimous consent that the
committee-reported substitute amendment be agreed to and that the bill,
as amended, be considered read a third time.
The PRESIDING OFFICER. Is there objection?
Without objection, it is so ordered.
The committee-reported amendment, in the nature of a substitute, was
agreed to.
The bill, as amended, was ordered to be engrossed for a third reading
and was read the third time.
Ms. COLLINS. Mr. President, I know of no further debate on the bill,
as amended.
The PRESIDING OFFICER. Is there further debate?
If not, the question is, Shall the bill pass?
The bill (S. 995), as amended, was passed.
Ms. COLLINS. Mr. President, I ask unanimous consent that the motion
to reconsider be considered made and laid upon the table.
The PRESIDING OFFICER. Without objection, it is so ordered.
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