Chapel Hill Training-Outreach Project, Inc.

On March 11, 2009 the President signed into law the FY09 Omnibus Appropriations bill which packages nine appropriation bills postponed from the last Congress to fund most federal agencies for this current fiscal year (FY09). The bill includes:
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$2.5 million for Lifespan Respite for this fiscal year (Funds must be obligated before Sept. 30, 2009). The funds are included in the Office of the Secretary's General Funds, so a decision will have to be made quickly by incoming Secretary-designate of Health and Human Services, Kathleen Sebelius, former governor of Kansas, regarding which federal agency will administer the Lifespan Respite funds. We will be monitoring this process closely. Funds could be made available to states through a competitive grant process as soon as late spring or early summer.

Other important potential sources of federal funding for respite and crisis nurseries included in the Omnibus bill are: Title II of the Child Abuse Prevention and Treatment Act, known as the Community Based Child Abuse Prevention Grants, the Social Services Block Grant, the Promoting Safe and Stable Families program, and Family Support under the Administration on Developmental Disabilities were all left with funds at the 2008 level. Funds for the National Family Caregiver Support Program were increased by less than $1 million ($854,000 increase, including $73,000 for the Native American Family Caregiver Program).

Dear President Obama:

On behalf of the ARCH National Respite Coalition, the Lifespan Respite Task Force, and other national and state partners, we applaud your commitment to the nation’s family caregivers in the context of social, health and long-term care reform proposals. We are writing to urge the in-coming Administration’s immediate support for full funding of the Lifespan Respite Care Act (PL 109-442) in FY09 and FY10.

Specifically, we urge the new Administration to consider the following recommendations to be implemented in the First 100 Days (See Final Transition Brief):

The Administration should encourage and support enactment of $53.3 million for Lifespan Respite in the final FY 09 Labor, HHS, Education appropriations bill; and

The President’s proposed budget for the Department of Health and Human Services for FY 10 should include $71.1 million for Lifespan Respite, the amount authorized by the Lifespan Respite Care Act.
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The Lifespan Respite Care Act authorizes competitive grants to Aging and Disability Resource Centers in collaboration with a public or private non-profit state respite coalition or organization to make quality respite available and accessible to family caregivers regardless of age or disability. The law allows grantees to identify, coordinate and build on federal, state and local respite resources and funding streams, and would help support, expand and streamline planned and emergency respite, provider recruitment and training, and caregiver training.
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Despite its widely supported enactment in 2006, the federal Lifespan Respite program has not yet been funded. The FY09 Senate Budget Resolution reserves $53 million in the Department of Health and Human Services account for Lifespan Respite. However, the Senate FY09 Labor/HHS/Ed appropriations bill included no funding, while the House bill included $5 million. A new Congress provides an opportunity for crafting a new FY09 Labor/HHS/Education Funding bill. If that opportunity should arise, we urge you to encourage Congress to fund the Lifespan Respite at its full authorization level of $53 million in FY09.
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For FY2010, we urge you to recommend full funding of $71.1 million for Lifespan Respite in your FY 2010 budget proposal for the Department of Health and Human Services. This is a modest proposal relative to the billions of dollars worth of uncompensated care provided today by the nation’s family caregivers. The nation’s estimated 50 million family caregivers provide about 80% of long-term care. The latest AARP study revealed that in 2007, the economic value of uncompensated family caregiving to the U.S. economy was estimated at $375 billion, up from $350 billion the previous year. This amount is more than total Medicaid spending in 2007, including both federal and state contributions for both medical and long-term care ($311 billion). In addition, according to the National Alliance for Caregiving and the MetLife Institute, American businesses lose $17.1 to $33.6 billion annually in productivity costs related to caregiving responsibilities.
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In these times of serious budget constraints, the economic value that accrues from respite is exceptional. Respite, the most frequently requested family support service, has been shown to provide family caregivers with the relief necessary to maintain their own health, bolster family stability, keep marriages intact, and avoid or delay more costly nursing home or foster care placements. Delaying nursing home, institutional or foster care placement of just one individual for several months can save Medicaid, child welfare, or other government programs tens of thousands of dollars.
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We know what to do. The Act is based on model State Lifespan Respite Systems in Wisconsin, as well as in Oregon, Nebraska, and Oklahoma. These systems provide easy access to an array of affordable, quality respite services; ensure flexibility to meet diverse needs; and assist with locating, training, and paying respite providers. A new program is up and running in Arizona, as well.
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For families and individuals who may not qualify for any public or private respite funding, including children with severe disabilities, teens with serious emotional conditions, and adults with Multiple Sclerosis, ALS, traumatic brain injury, spinal cord injuries, cancer, Alzheimer’s and many other chronic conditions, these programs may be holding out the only helping hand. For our wounded veterans returning home from war with traumatic brain injuries and other polytraumas, Lifespan Respite systems could be the lifeline their families must turn to in their new roles as life-long family caregivers.
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We urge you to work with Congress to secure the $53.3 million authorized by law for Lifespan Respite programs in the FY 09 Labor, HHS, and Education appropriations bill, recommend full funding for Lifespan Respite in the President’s FY 2010 budget proposal, and thank you for your ongoing leadership on this issue. We respectfully submit for your review, a respite transition brief to provide background and answer any questions you may have about the critical importance of respite. If you require more information, please don’t hesitate to contact Jill Kagan with the National Respite Coalition at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it or 703-256-9578.
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During the first 100 days of the new Administration, send a message to the nation’s family caregivers that we value their health and well-being and that help is on the way in these economically devastating times.
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Sincerely,

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National Organizations:

Alzheimer’s Foundation of America

American Association for Geriatric Psychiatry

American Network of Community Options and Resources

American Psychological Association

American Public Health Association

American Society on Aging

Association of University Centers on Disabilities

Autism Society of America

Brain Injury Association of America

Chronic Illness Coalition

Easter Seals

Generations United

Lutheran Services in America

National Alliance for Children’s Trust and Prevention Funds

National Association of Social Workers

National Association of State Head Injury Administrators

National Center on Caregiving, Family Caregiver Alliance

National Child Abuse Coalition

National Down Syndrome Congress

National Down Syndrome Society

National Family Caregivers Association

National Federation of Families for Children’s Mental Health

National MPS Society

National Multiple Sclerosis Society

National Respite Coalition

Paralyzed Veterans of America

Rosalynn Carter Institute for Caregiving

The ALS Association

The Arc of the United States

Title II Community AIDS National Network

United Cerebral Palsy

United Spinal Association

Well Spouse Association

State and Local Organizations:

(alphabetical by state)

Alabama Lifespan Respite Resource Network

United Cerebral Palsy of Huntsville and Tennessee Valley, Inc, AL

Arizona Interfaith Network

Arizona Lifespan Respite Care Network, State of Arizona

Foundation for Senior Living, Phoenix, AZ

Hopi Tribal Program, Office of Elderly Services, Kykotsmovi, AZ

Pima County Interfaith Council, Tucson, Pima Co., AZ

Yuma County Interfaith Council, Yuma County, Arizona

Valley Interfaith Project, Phoenix and Maricopa County, Arizona

California Respite Association

Delaware Caregivers Support Coalition

Connecticut Lifespan Respite Coalition

University of Delaware Center for Disabilities Studies

Georgia Lifespan Respite Coalition

Illinois Respite Coalition

Iowa Respite and Crisis Care Coalition

Respite Outreach Care for Kansans Organization, Inc., Wichita, Kansas

Kansas Lifespan Respite Coalition

Maryland Respite Care Coalition

Hope and Healing Foundation, Michigan

Developmental Educational Assistance Program, Miles City, MT

Nebraska Respite Coalition

Autism Family Services of NJ, Brick, NJ

Caregivers of New Jersey- Bordentown, NJ

Epilepsy Foundation of NJ, Trenton, NJ

Family Resource Network, Trenton, NJ

Family Support Center of NJ, Manasquan, NJ

New Jersey Lifespan Respite Coalition

Prevent Child Abuse New York

North Carolina Respite Care Coalition

Oklahoma Respite Resource Network

Lifespan Respite Network of Jackson County, Medford, Oregon

Oregon Lifespan Respite Program

Senior and Disability Services, Central Point, OR

Alliance for Community Respite Care, Pittsburgh PA

CareBreak at the Watson Institute, Sewickley PA

Pennsylvania Lifespan Respite Coalition

South Carolina Respite Coalition

Tennessee Respite Coalition

Vermont Family Network/ Family Voices of Vermont

Partnership for People with Disabilities, VCU, Richmond, Virginia
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cc: Secretary Designate Tom Daschle

John Podesta

Valerie Jarrett
Michael Straumanis
Dana Singiser

Karen Richardson

Elizabeth Engel

Dora Hughes

Kareem Dale

_____________________________________________________________________

December 2008 Legislative Update:

Lifespan Respite Care Act (P.L. 109-442)

Lifespan respite

Congress in working on a FY09 Labor/HHS/Education Funding Bill to be introduced early in the New Congress!! Make sure funding for Lifespan Respite is included!
Lifespan respite

STATUS:
The Lifespan Respite Care Act became law in 2006, but has not received any funding from Congress. Congress delayed action on a final FY09 funding bill by passing a Continuing Resolution (CR) to keep government running and to level fund most existing Labor/Health and Human Services/Education programs until March 2009. The CR will expire at that time and federal legislators plan to enact a final FY 2009 Labor/HHS/Education funding bill by the March deadline.
Lifespan respite

The Lifespan Respite law authorizes Congress to spend up to $53.3 million in FY09. The FY09 Congressional Budget Agreement includes at least $26 million for Lifespan Respite. While the Budget Agreement does not guarantee funding, it gives appropriators greater leeway to fund the program. With a new Congress and a new Administration, we have an opportunity to seek full funding ($53.3 million) for the Lifespan Respite Care Act in March of 2009.

Lifespan respite

DECEMBER ACTION:
Meet in person with Reps and Senators while they are home through December. With the elections over, they will have more time to visit directly with you. And if you have a new Senator or Representative, they will be even more eager to learn about the programs that benefit families in their state or districts. Invite them to your events or to tour your program and invite the press. Write letters to the editors, write op eds, call in to your local radio and TV shows. Call your own press conference and highlight families, caregivers and programs, and call on Congress to fund respite. Make the case that respite is good for the economy by keeping people out of more costly out-of-home placements.
Lifespan respite

Even if you have already made contact, keep reaching out to your Representatives and Senators with the MESSAGE below. Take this opportunity to introduce yourself to new Members. For contact information, visit www.congress.org or call 202-225-3121 and ask for the Member's or Senator's office. If you cannot visit staff or your legislator in person, the next most effective method is a phone call to the DC office.

MESSAGE:

In 2006, the Lifespan Respite Care Act was signed into law to make respite more accessible and affordable to family caregivers, regardless of age or disability. To date, Congress has provided no funding ($0.00). This is unacceptable!
Lifespan respite

We are in the midst of an economic crisis. Every effort should be made to fund responsible investments in the country’s future. The economic value that accrues from respite is exceptional. Respite has been shown to help avoid or delay more costly nursing home or foster care placements. Delaying nursing home or institutional placement of just one individual with a chronic condition for several months can save Medicaid, private insurance, or the family thousands of dollars

Lifespan respite
The nation’s estimated 50 million family caregivers provide 80% of long-term care. New data from AARP show that the value of uncompensated family caregiving services to the U.S. economy was estimated at $375 billion in 2007, up from $350 billion in 2006 – a $50 Billion increase in just one year. This amount is more than total Medicaid spending in 2007, including both federal and state contributions for both medical and long-term care ($311 billion), and approaches total Medicare spending in 2007.
Lifespan respite

American businesses lose $17.1 to $33.6 billion annually in lost productivity costs related to caregiving responsibilities.
Lifespan respite

Respite is in short supply or inaccessible for all age and disability groups.
Lifespan respite

The Lifespan Respite Care Act is based on model State Lifespan Respite Systems in Oregon, Nebraska, Wisconsin and Oklahoma. These systems provide easy access to an array of affordable, quality respite services; ensure flexibility to meet diverse needs; and assist with locating, training, and paying respite providers.
Lifespan respite

These efforts have been cited as exemplary by the National Conference of State Legislators, highlighted by the National Governor's Association, and hailed by the 2005 White House Conference on Aging.
Lifespan respite

In our state of ____________, family caregivers need respite desperately, regardless of the age or disability of the care recipient. [Supplement with personal stories, state data on respite need, including waiting lists, costs, etc.]
Lifespan respite

29 Members of the US House of Representatives sent a letter to the House Subcommittee on Labor/ HHS/Education appropriations urging full funding ($53.3 million) for the Lifespan Respite Care program in the FY09 Labor/HHS/Education funding bill and 15 Senators sent a similar letter to the Senate Subcommittee. The FY 09 Budget Agreement reserves funds in the Department of Health and Human Services account to pay for Lifespan Respite in FY09.

Lifespan respite
TAKE ACTION in support of family caregivers. On behalf of all the family caregivers in your state, please urge the Appropriations Committee when it considers a final FY09 funding bill to include $53 million for Lifespan Respite.

If you need more information about the need for respite in your district or state, please feel free to contact me or your state respite coalition contact, state or community-based agency contact, or other organizational representative.

Jill Kagan, MPH
Chair, National Respite Coalition
4016 Oxford St.
Annandale, VA 22003
703-256-9578

This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

Lifespan respite

______________________________________________

Menu for other items on this page:

Lifespan Respite Act

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Summary of the Lifespan Respite Act
(PL109-442):

Use of Funds:
The Act authorizes competitive grants to Aging and Disability Resource Centers in collaboration with a public or private non-profit state respite coalition or organization to make quality respite available and accessible to family caregivers regardless of age or disability. The law allows grantees to identify, coordinate and build on federal, state and local respite resources and funding streams, and would help support, expand and streamline planned and emergency respite, provider recruitment and training, and caregiver training. Grantees will have the option of using funds for training programs for family caregivers in making informed decisions about respite services; for other services essential to the provision of respite; and for training and education for new caregivers. Timelines for Implementation

What is a Lifespan Respite Program?
A lifespan respite program provides a coordinated system of accessible, community-based respite care services for family caregivers of children and adults with special needs. Lead Agency Eligibility
Funds would be provided on a competitive grant basis to Aging and Disability Resource Centers in collaboration with public or private nonprofit statewide respite coalitions or organizations (memorandum of agreement required in application). Priority would be given to applicants who show the greatest likelihood of implementing or enhancing lifespan respite care statewide.

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Who Can Access Lifespan Respite Programs?
Caregivers who are family members, foster parents, or other adults providing unpaid (clarified in report language) care for an adult or child with a special need may access these programs. Adult with special need is defined broadly as a person 18 years of age or older who requires care or supervision to meet the person's basic needs, to prevent physical self-injury or injury to others, or to avoid placement in an institutional facility. A child with a special need is a person less than 18 years of age who requires care or supervision beyond that required of children generally to meet the child's basic needs or prevent physical self-injury or injury to others.

Application Submission
The Governor submits application on behalf of the State Agency that administers the Older American's Act, the State's Medicaid program, or another agency designated by the Governor.

Federal Administration
Secretary of Health and Human Services is required to work in cooperation with the National Family Caregiver Support Program Officer of the Administration on Aging and other respite care programs within the Department to ensure coordination of respite for family caregivers

Funding Authorization:
$30 million for FY 07, $40 million for FY 08, $53.3 million for FY 09, $71.1 million for FY 2010 and $94.8 for FY 2011

National Resource Center:
Establishes National Resource Center on Lifespan Respite Care

GAO Report:
A GAO report on Lifespan Respite Programs is required by 2011.

President Signs Lifespan Respite Care Act
(Click here for a copy of PL 109-442)
Washington , DC (December 21, 2006)

The Lifespan Respite Task Force, a coalition of over 170 national, state, and local organizations, applauds the signing of The Lifespan Respite Care Act of 2006 (HR 3248 ) into law . The bill was introduced and championed in the US House of Representatives by Rep. Mike Ferguson (R-NJ) and James Langevin (D-RI). A companion bill in the Senate was cosponsored by Senator Hillary Clinton (D-NY) and Senator John Warner (R-VA). The Lifespan Respite Task Force includes a diverse group of national and state organizations: state respite and crisis care coalitions; health and community social services; disability, mental health, education, faith, family caregiving and support groups; groups from the child advocacy and the aging community; and abuse and neglect prevention groups.

Family caregivers are providing 80% of long-term care in the US , a level of care valued at $306 billion a year, more than what is spent on nursing home and paid home care combined . Even though most families take great joy in providing care to their loved ones so that they can remain at home, the physical, emotional and financial consequences can be overwhelming without some support, such as respite. Respite provides the much needed temporary break from the often exhausting challenges imposed by constant caregiving.

The new law would authorize $289 million over five years for state grants to develop Lifespan Respite Programs to help families access quality, affordable respite care. Lifespan respite programs are defined in the Act “as coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with special needs.

When the bill passed the House, Rep. Ferguson, whose own father was a caregiver for his ill mother for 6 years said , “Today's action by the House of Representatives represents not only an important victory for family caregivers nationwide, but it also sends America's caregivers a clear message: Your selfless sacrifice is appreciated, and help is on the way.”

“On behalf of over nation's family caregivers who desire to keep their loved ones at home despite limited support, we commend Rep. Ferguson, Vice-chair of the Health Subcommittee of the House Energy and Commerce Committee, Rep. Langevin, and Senator Hillary Clinton (D-NY) and Senator Warner (R-VA) for their leadership, and especially want to thank them, their colleagues from both sides of the aisle, and the White House for taking action to help the burgeoning numbers of family caregivers,” said Jill Kagan, Chair of the National Respite Coalition, and facilitator of the Lifespan Respite Task Force. “Relatively minimal investments in respite help family caregivers provide this care at home and in the community. At a time when federal and state fiscal resources are limited, this is the most compassionate and fiscally responsible thing we can do, and a most welcome gift in this holiday season.”

Background: Lifespan Respite Task Force, ARCH National Respite Coalition

The Lifespan Respite Task Force, a coalition of over 170 national and state organizations applauds the action taken today by the President to sign the “Lifespan Respite Care Act of 2006,” (HR 3248) into law, demonstrating the breadth of strong bipartisan support for the measure. The House bill was originally introduced by Rep. Mike Ferguson (R-NJ) and James Langevin (D-RI), along with Representatives Terry (R-NE), Norwood (R-GA), Wilson (R-NM), and Brown (D-OH), and had an additional 79 cosponsors from both parties . The Senate bill was introduced by Senator Hillary Clinton (D-NY), Senator John Warner (R-VA), and Senators Mikulski (D-MD), Smith (R-OR), Kennedy (D-MA), Collins (R-ME), Jeffords (I-VT), Bond (R-MO), Murray (D-WA), Cochran (R-MS), Boxer (D-CA), Snowe (R-ME), Kerry (D-MA), Talent (R-MO), Nelson (D-NE), Coleman (R-MN), Durbin (D-IL), and Hagel (R-NE). The bill would authorize grant funds to states to develop Lifespan Respite Programs to help families access quality, affordable respite care regardless of age or disability.

Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous caregiving. Three fifths of family caregivers age 19-64 surveyed recently by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non caregivers. Out-of-home placement, or something even more heartrending, may seem like the only option. Tragically, a study of elderly spousal caregivers (aged 66-96) found that caregivers who experience caregiving-related stress have a 63% higher mortality rate than noncaregivers of the same age.

Respite, often the most frequently requested family support service, provides caregivers with occasional relief necessary to sustain their own health or attend to other family members, as well as quality, meaningful experiences for the care recipient. Many caregivers may also find themselves in crisis situations due to job loss, homelessness, substance abuse or their own ill health. A temporary haven to insure the safety of the person for whom they provide constant care becomes an absolute necessity.

Respite has been shown to help sustain family caregiver health and wellbeing, avoid or delay out-of-home placements, and reduce the likelihood of abuse and neglect. According to the ARCH National Respite Network data from an outcome based evaluation pilot study show that respite may also reduce the likelihood of divorce and help sustain marriages. There are also important cost savings due to respite.

Despite this success, access to quality respite care is difficult, especially for individuals with certain disabilities or chronic illness such as behavioral, mental health or severe medical conditions, or in some rural and urban centers where resources may be scarce. Shortages of trained providers and quality respite programs, limited family resources to pay for respite care, restrictive program eligibility criteria based on age, income or disability, and fragmented and duplicative systems, keep many families from accessing the respite they need.

The Lifespan Respite Care Act of 2006 is based on model state lifespan respite programs that have successfully addressed all of these barriers. Three states have enacted legislation to implement Lifespan Respite Programs (OR, NE, WI), which establish state and local infrastructures for developing, providing, coordinating and improving access to respite for all caregivers, regardless of age, disability or family situation. Oklahoma has also implemented a successful Lifespan Respite program. The Lifespan Respite Care Act of 2006 will help establish respite as a national priority and provide the assistance states and localities need to move forward.

The Lifespan Respite Task Force, a working group of the National Respite Coalition (NRC), is a broad coalition of national and state organizations which came together to develop and promote a national respite policy. The NRC is the policy division of the membership organization, the ARCH National Respite Network.

Aging and Disability Resource Centers

Since 2003, 43 states have received Aging and Disability Resource Center initiative grants. Click the link that follows to view a map that shows the states receiving ADRC awards in 2003, 2004 and 2005 as well as summaries of each state's proposed project. The ADRC projects provide a good opportunity for collaboration! http://www.adrc-tae.org/tiki-index.php?page=PublicHomePage

The Mission of the National Respite Coalition

The Mission of the ARCH National Respite Coalition is to secure quality, accessible, planned and crisis respite services for all families and caregivers in need of such services in order to strengthen and stabilize families, and enhance child and adult safety.

The Coalition works to achieve these goals by preserving and promoting respite in policy and programs at the national, state, and local levels. For more information on NRC’s activities, write the National Respite Coalition at 4016 Oxford St., Annandale, VA, 22003, call Jill Kagan at (703) 256-9578, or e-mail her at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

When you join the National Respite Network you are automatically a member of the National Respite Coalition, the Policy Division of the ARCH National Respite Network, and can receive the latest updates on Congressional legislative activity important to respite and the families you serve, as well as information from the states about program implementation. The National Respite Network is a program of the Chapel Hill Training-Outreach Project.

Contact:

Jill Kagan, MPH
Chair, National Respite Coalition
National Respite Coalition
Policy Division of the ARCH National Respite Network
4016 Oxford St.
Annandale, VA 22003
703-256-9578
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