[Congressional Record Volume 165, Number 57 (Tuesday, April 2, 2019)]
[Senate]
[Pages S2191-S2192]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Ms. COLLINS:
  S. 995. A bill to amend title XXIX of the Public Health Service Act 
to reauthorize the program under such title relating to lifespan 
respite care; to the Committee on Health, Education, Labor, and 
Pensions.
  Ms. COLLINS. Mr. President, I rise today to introduce legislation 
with my colleague from Wisconsin, Senator Baldwin, to reauthorize the 
Lifespan Respite Care Program. Respite care provides full-time 
caregivers with the much-needed opportunity to take a temporary break 
from their responsibilities caring for aging or disabled loved ones.
  Every day, an estimated 43 million family caregivers attend to loved 
ones who are experiencing chronic, disabling health conditions. While 
many of these individuals care for an older adult, almost one-third of 
caregivers attend to persons under the age of 50. Caregivers help their 
loved ones remain at home, often delaying the need for nursing home or 
foster care placements. The value of their efforts is tremendous, 
amounting to more than $470 billion in uncompensated care.
  This compassionate task, however, can take a toll. Caregivers 
experience higher mortality rates and are more likely to acquire acute 
and chronic health conditions. Respite care, which provides temporary 
relief to caregivers from their ongoing responsibilities, helps to 
reduce mental stress and physical health issues they may experience, 
keeping caregivers healthy and families intact. Yet, almost 80 percent 
of America's caregivers have never received any respite services.
  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. Since the 
Lifespan Respite Care Act was enacted in 2006, 37 States and the 
District of Columbia have received grants to increase the availability 
and quality of respite services. Still, the need for respite care 
continues to increase and outpace available resources.
  When I ask family caregivers about their greatest needs, the number 
one that I hear is respite. The Maine Department of Health and Human 
Services recognized this urgent need in a report released in December 
2018 on children's behavioral health services. The report recommended 
expanding access to respite care services for families. One Maine 
mother shared, ``Respite has helped our family because we have been 
able to take other children to doctors appointments without everyone 
having to go. My husband and I have been able to have a little time 
away. I have been able to attend to my own mental health needs.'' From 
families caring for children with disabilities to those caring for 
older adults, the need for respite care today continues to grow.
  Our legislation will help to close the resource gap experienced by 
our nation's caregivers. Specifically, the Lifespan Respite Care Act 
will authorize robust funding for this program over the five years, 
through 2024, to assist states in establishing or enhancing statewide 
Lifespan Respite systems. It would authorize $20 million for fiscal 
year 2020, with funding increasing by $10 million annually, in order to 
reach $60 million for fiscal year 2024. This bill is widely supported 
by leading caregiver and respite organizations, including the ARCH 
National Respite Network and Resource Center, the American 
Psychological Association, the Arc, and the Elizabeth Dole Foundation. 
Mr. President, I ask to include letters from these supporting 
organizations in the Record.
  Mr. President, there is a large gap between caregivers who need 
respite services and those who receive it. Our legislation would 
provide the necessary resources to state respite agencies to ensure 
that more caregivers have access to the respite services they need. I 
urge all of my colleagues to join in support of this important 
bipartisan legislation, the Lifespan Respite Care Reauthorization Act 
of 2019.


[[Page S2192]]


                                                    April 1, 2019.
     Hon. Susan Collins,
     U.S. Senate, Washington, DC.
     Hon. Tammy Baldwin,
     U.S. Senate, Washington, DC.
     Hon. Jim Langevin,
     House of Representatives, Washington, DC.
     Hon. Cathy McMorris Rodgers,
     House of Representatives, Washington, DC.
       Dear Senator Collins, Senator Baldwin, Representative 
     Langevin and Representative McMorris Rodgers: We, the 
     undersigned national organizations representing all ages and 
     disabilities, are writing to offer our fervent support for 
     and endorsement of the Lifespan Respite Care Reauthorization 
     Act to reauthorize the Lifespan Respite Care Program at $200 
     million over five years. We also want to thank you for your 
     leadership in supporting the nation's family caregivers.
       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 value of family 
     caregivers. 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. AARP 
     has estimated that in 2013, family caregivers provided $470 
     billion in uncompensated care to adults, a staggering 
     statistic that exceeds federal and state spending on Medicaid 
     health services and long-term services and supports that same 
     year.
       While the benefits of family caregiving are plentiful, 
     caregiving can take its toll--with older spousal family 
     caregivers experiencing higher mortality rates, rates of 
     acute and chronic conditions, and depression than 
     noncaregivers. 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. Not surprisingly, high burden family 
     caregivers (defined as those who assist their loved one with 
     personal care such as getting dressed or bathing) cite lack 
     of respite as one of their top three concerns.
       To help provide family caregivers the support they need, 
     the Lifespan Respite Care Program was enacted in 2006 with 
     strong bipartisan support. The program provides competitive 
     grants to states to establish or enhance statewide Lifespan 
     Respite systems that 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 or mini-grants 
     to community and faith-based agencies; building respite 
     capacity by recruiting and training respite workers and 
     volunteers; and raising awareness about respite through 
     public education campaigns. Originally authorized through 
     Fiscal Year 2011, 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.
           Sincerely,
       AARP; Alzheimer's Association; Alzheimer's Foundation of 
     America; Alzheimer's Impact Movement; American Association of 
     Caregiving Youth; American Association on Intellectual and 
     Developmental Disabilities (AAIDD); American Dance Therapy 
     Association; American Music Therapy Association; The Arc of 
     the United States; Association of University Centers on 
     Disabilities (AUCD); Autism Society of America; Brain Injury 
     Association of America; Caregiver Action Network; Caring 
     Across Generations; Christopher & Dana Reeve Foundation; 
     Easterseals.
       Elizabeth Dole Foundation; Epilepsy Foundation; Family 
     Caregiver Alliance, National Center on Caregiving; Family 
     Voices; Generations United; The Jewish Federations of North 
     America; Justice in Aging; LeadingAge; Lupus Foundation of 
     America; The Michael J. Fox Foundation for Parkinson's 
     Research; National Alliance for Caregiving; National Alliance 
     of Children's Trusts and Prevention Funds; 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 Social Workers (NASW).
       National Association of State Directors of Developmental 
     Disabilities Services; National Association of State Head 
     Injury Administrators; National Association of States United 
     for Aging and Disabilities; National Down Syndrome Congress; 
     National Down Syndrome Society; National Hospice and 
     Palliative Care Organization; National Military Family 
     Association; National Multiple Sclerosis Society; National 
     Respite Coalition; Paralyzed Veterans of America; Program to 
     Improve Eldercare, Altarum; Rosalynn Carter Institute for 
     Caregiving; Sibling Leadership Network; TASH; United Spinal 
     Association; Well Spouse Association.

                          ____________________