Respite Care Legislation Introduced in House

Jill Kagan shares the following press release and statement about new respite legislation pending before Congress.

NATIONAL RESPITE COALITION TASK FORCE PRESS RELEASE

Contact: Jill Kagan, Chair 703-256-9578

135 ORGANIZATIONS SUPPORT H.R. 5241, Lifespan Respite Care Act of 2002

Washington, DC (July 26, 2002) - The Lifespan Respite Task Force, a coalition of over 135 national, state, and local organizations, announced its strong support for H.R. 5241, the Lifespan Respite Care Act of 2002, introduced today by Rep. Jim Langevin (D-RI), Rep. Jim Greenwood, (R-PA), Rep. Connie Morella (R-MD), Robert Brady (D-PA), and Bill Pascrell (D-NJ). They were joined by a bipartisan group of 35 additional cosponsors. The Lifespan Respite Task Force includes a diverse group of national and state organizations: state respite coalitions; health and community social services; disability , mental health, education, faith, family caregiving and support groups; child advocacy and the aging community; and abuse and neglect prevention groups.

Lifespan respite programs are defined in the bill "as coordinated systems of accessible, community-based respite care services for all caregivers of individuals regardless of the individual's age, race, ethnicity or special need."

The bill would authorize funds for:

* development of state and local lifespan respite programs, based on models and best practices;

* evaluation of such programs;

* planned or emergency respite care services;

* training and recruitment of respite care workers and volunteers; and

* caregiver training.

"We commend the cosponsors for their strong and continuous leadership on behalf of caregivers who struggle to keep their loved ones at home despite limited support," said Jill Kagan, Chair of the National Respite Coalition, and facilitator of the Lifespan Respite Task Force. "The bill is on a fast track. The Senate Health, Education, Labor and Pensions Committee unanimously approved its version of the bill (S. 2489) on July 11, only three months after its introduction. There has never been a bill that addresses the needs of caregivers across the lifespan that has garnered so much support in such a short period of time. "We will push for similar expedited action in the House. And we are hopeful of passage because many in Congress are caregivers themselves or know people who are.

(See attached statement)

STATEMENT

The Lifespan Respite Task Force, a coalition of over 135 national and state organizations strongly endorses H.R. 5241, introduced today by Rep. Jim Langevin (D-RI), Rep. Jim Greenwood, (R-PA), Rep. Connie Morella (R-MD), Robert Brady (D-PA), and Bill Pascrell (D-NJ), and cosponsored by a bipartisan group of 35 members. The companion bill in the Senate, S. 2489, was approved unanimously by the Senate Health, Education, Labor, and Pensions Committee, and we expect passage by the full Senate soon. 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. Out-of-home placement, or something even more tragic, may seem like the only option.

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. 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 stability, avoid out-of-home placements, and reduce the likelihood of abuse and neglect. According to the ARCH National Respite Network and Resource Center, new preliminary data from an outcome based evaluation pilot study show that respite may also reduce the likelihood of divorce and help sustain marriages.

Despite this success, access to quality respite care is difficult, especially for grandparents caring for grandchildren, for individuals with certain disabilities or chronic illness such as mental illness or severe medical conditions, especially for those over age 18, and 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 2002 and the development of the Lifespan Respite Task Force were motivated by state model lifespan respite programs. 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 Lifespan Respite Program, and Maryland has established a statewide family caregiving coordinating council that will develop a plan to provide lifespan respite. Several other states are actively considering or piloting similar programs or legislation. The Lifespan Respite Care Act of 2002 will help establish respite as a national priority and provide the assistance states and localities need to move forward.

This effort becomes even more critical in light of the Supreme Court's Olmstead decision, which requires efforts by the federal government, states, and local agencies to serve individuals with disabilities in the community, rather than in institutional settings. If this goal is to be achieved, family caregivers must be supported.

The Administration recognized this in its recently released implementation plan, Delivering on the Promise: A Compilation of Individual Federal Agency Reports of Actions to Eliminate Barriers and Promote Community Integration. The Department of Health and Human Services' recommended Congressional authorization and funding for two new respite demonstrations for adults and children with disabilities.

The Lifespan Respite Task Force, a working group of the National Respite Coalition (NRC), is a broad coalition of national and state organizations that has been meeting for two years to develop and promote a national respite policy. The NRC is the policy division of the membership organization, the ARCH National Respite Network and Resource Center.