November 13, 2006

The Honorable J. Dennis Hastert
Speaker of the House
US House of Represenatives
H-228, The Capitol
Washington, DC 20515

Dear Mr. Speaker,

We, the undersigned national organizations, are writing in support of the Lifespan Respite Care Act (HR 3248) reported favorably from the House Energy and Commerce Committee on September 20, 2006, and urge you to bring the bill to the floor for a vote during the November lameduck session. November is National Family Caregivers Month – the perfect opportunity to let the nation’s families know that Congress supports them in their efforts to keep family members with disabilities and chronic conditions at home.

The bill, introduced by Energy and Commerce Health Subcommittee Vice-Chair Michael Ferguson (R-NJ), Rep. Langevin (D-RI) and several members of the Energy and Commerce Committee, authorizes competitive grants to states to make quality respite available and accessible to family caregivers, regardless of age, disability, or family situation. For the more than 50 million family caregivers nationwide, respite can help provide the relief necessary to maintain their own health, bolster family stability, keep marriages intact, and avoid or delay much more costly nursing home or foster care placements.

Respite, however, is in short supply or inaccessible for all age groups. Disparate and inadequate funding streams exist for respite in most states. Respite services are capped and limited to narrow eligibility categories. Long waiting lists are the norm. Respite may not exist at all in some states for children over age 18 with disabilities who are still living at home, or individuals under age 60 with conditions such as ALS, MS, spinal cord or traumatic brain injuries, or children with autism or serious emotional conditions.

Yet respite is often the most frequent service requested by families. While most families take great joy in helping their family members to live at home, it has been well documented that family caregivers experience physical and emotional problems directly related to their caregiving responsibilities. 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 noncaregivers. 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.

The Lifespan Respite Care Act is based on model 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.

We know Lifespan Respite Systems work and support the legislation that will make them more available to the States. Please bring the bill to the House floor for a vote in November.

Sincerely,

AARP
ADA Watch/National Coalition for Disability Rights
Alzheimer’s Association
American Association for Geriatric Psychiatry
American Association for Marriage and Family Therapy
American Association of Homes and Services for the Aging
American Association of Pastoral Counselors
American Association of People with Disabilities
American Association on Mental Retardation
American Health Care Association
American Music Therapy Association
American Network of Community Options and Resources
American Occupational Therapy Association
American Public Health Association
American Psychological Association
American Society on Aging
America's Health Together
Association for Technology Dependent Children
Association of Assistive Technology Act Programs
Association of University Centers on Disabilities
Autism Society of America
Bazelon Center for Mental Health Law
Brain Injury Association of America
Child Neurology Society
Child Welfare League of America
Chronic Illness Coalition
Easter Seals
Epilepsy Foundation
Family Caregiver Alliance
Family Voices
Federation of Families for Children's Mental Health
Christopher Reeve Paralysis Foundation
Generations United
Hospice Foundation of America
Independent Group Home Living
Jewish Federation of Metropolitan Chicago
National Adult Day Services Association
National Alliance for Caregiving
National Alliance on Mental Illness
National Association of Councils on Developmental Disabilities
National Association for Home Care and Hospice
National Association of Orthopaedic Nurses
National Association of Social Workers
National Association of State Directors of Special Education
National Association of State Head Injury Administrators
National Center for Assisted Living
National Council on Aging
National Disability Rights Network
National Down Syndrome Society
National Family Caregivers Association
National Gerontological Nursing Association
National Hospice and Palliative Care Organization
National Mental Health Association
National MPS Society
National Multiple Sclerosis Society
National Organization For Empowering Caregivers
National Organization on Disability
National Rehabilitation Association
National Respite Coalition
National Spinal Cord Injury Association
Older Women’s League
Paralyzed Veterans of America
Parents Anonymous, Inc.
Rosalynn Carter Institute for Caregiving
TASH
The ALS Association
The Arc of the United States
United Cerebral Palsy
United Spinal Association
Wilson's Disease Association