Lifespan Respite Care Reauthorization Act of 2019
Floor Speech
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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 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.
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. 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.
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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.
283, S. 995.
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Ms. COLLINS. Mr. President, I know of no further debate on the bill, as amended.
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