Lifespan Respite Care Reauthorization Act of 2019

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.

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.

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.

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.

Mr. President, today is National Service Recognition Day, when we take a moment to honor AmeriCorps and Senior Corps members for the many contributions they make

in communities across the nation. As Americans, we take inspiration from those who have answered the call to serve, whether in defense of our Nation abroad or to strengthen our communities at home. The willingness to serve a purpose greater than ourselves is a hallmark of our Nation and those who commit themselves to the betterment of our country deserve and have earned our support. That is why this year, on National Service Recognition Day, I am joining Senators Coons and Duckworth and Congressman Larson and other colleagues in introducing the America's Call to Improving Opportunities Now (ACTION) for National Service Act of 2019. Our legislation calls for a great expansion of the number of service opportunities and an increased investment in those who serve.

Since 1994, over one million individuals have served through the AmeriCorps program. Annually, roughly 220,000 seniors over the age of 55 volunteer through the Senior Corps programs. These individuals have addressed critical community needs in education, economic development, health, and many other areas. They are among the teams of first responders when disaster strikes. Unfortunately, we have not created the capacity to support all Americans who want to serve.

The question of service is vital to our Nation. I was proud to have joined my friend and colleague, the late Senator John McCain, in laying out a vision and plan to support and encourage service--military, national and public--by establishing the National Commission on Military, National, and Public Service. After meeting with communities across the country, the Commission submitted its interim report, which highlighted that Americans value service and are interested in pursuing transformative efforts to involve many more Americans in service. Yet, the Commission also reported that there are many barriers to service, particularly financial ones. Furthermore, there is a lack of awareness about existing programs and opportunities.

The ACTION for National Service Act will honor our national value of service, while addressing the barriers that limit citizens' opportunities to serve. Our legislation will set us on a path to one million national service positions within ten years. It will increase the educational award so that an individual completing two full years of service will earn the equivalent of four years of the average in- state tuition at a public institution. Those who are willing to serve should not have to carry a heavy burden of student loan debt to achieve their educational goals. The ACTION for National Service Act will also ease other financial barriers to service, increasing the living allowance and eliminating the tax liability for the education awards and living stipends. The bill calls for a robust outreach campaign, requiring that all eligible individuals be notified of their options to serve. Finally, the ACTION for National Service Act calls for elevating the Corporation for National and Community Service to a cabinet-level agency and establishes a National Service Foundation to leverage private sector resources to support national service activities.

Mr. President, it is time we reinvigorate the social contract between America and its citizenry. Americans have a deep tradition of national service, starting with the dedicated men and women of our armed forces and including all those who have served in AmeriCorps, Senior Corps, and the Peace Corps. However, as more Americans wish to serve, it is important that they be given the opportunity to do so. Just as critical is investing in the education and professional development of those who have sacrificed and given so much to our Nation. Developing the talents of our most committed citizens pays life-long dividends. Our investment in the GI Bill not only honors our service members, but also enriches our Nation. Similarly, the education awards for those who have served through our national programs have economic impacts beyond the individuals who earn them. That is the new deal that the ACTION for National Service Act offers.

All AmeriCorps members take a pledge to get things done for Americans, to make communities safer, smarter and healthier, and to bring us together. I'd like to thank Senators Coons, Duckworth, Gillibrand, Klobuchar, Blumenthal, Brown, Baldwin, and Blumenthal for signing on as original cosponsors and urge our colleagues to join us in pledging to ensure that all who want to answer the call to serve can do so by cosponsoring the ACTION for National Service Act and working for its passage.

Mr. President, today I wish to reaffirm my partnership on the Lifespan Respite Care Reauthorization Act of 2019 with my good friend, Senator Tammy Baldwin, who I would like the record to reflect is an original lead cosponsor of S. 995. As the longstanding coauthors of this legislation, Senator Baldwin and I have been working together to provide the necessary resources to State respite agencies to ensure that caregivers have access to the respite services they need. Following the introduction of the legislation earlier this week, we heard testimony in the Senate Special Committee on Aging that reaffirmed the importance of respite care for the millions of caregivers who are caring for loved ones with Alzheimer's and other dementias. I look forward to continuing to work with Senator Baldwin to advance S. 995.