[Congressional Record Volume 166, Number 36 (Monday, February 24, 2020)]
[Senate]
[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

[[Page S1104]]

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 
     [email protected].
       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.

[[Page S1105]]

  

     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.

                          ____________________