LIFESPAN RESPITE

Many families take care of their relatives with disabilities (children, adults, and the elderly) at home instead of placing them in institutions or nursing homes. Often the family takes on the burden of care alone, without outside help. The “lifespan respite” concept would provide temporary breaks (respite) for family caregivers (sometimes a few hours a day, sometimes a week or more) so they can continue caring for their relatives and lessen the risk of institutionalization. It would coordinate access and service provision without regard to the person's age.

Family caregivers are providing 80% of long-term care in the US, worth $ 306 billion a year, more than the amount spent on nursing home and paid home care combined, according to the national Lifespan Respite Task Force.

In December 2006, Congress passed and President Bush signed The Lifespan Respite Care Act of 2006 (HR 3248, PL 109-442), which authorizes $ 289 million over five years for grants to states to develop Lifespan Respite Programs to help families access quality, affordable respite care. The grants require a 25% state or local match. The act defines lifespan respite programs as “coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with special needs. ” People with special needs are those who require care or supervision to (1) meet the person's basic needs or (2) prevent physical injury, self-injury, or injury to others. For children, the definition includes care beyond that required of children generally and for adults it includes avoiding placement in an institution. The funds can be used to:

1. develop and coordinate state and local lifespan respite programs,

2. provide planned or emergency respite care services,

3. train and recruit respite care workers and volunteers, and

4. related functions.

The new law is based on programs in four states that already have Lifespan Respite programs: Oregon, Nebraska, Oklahoma (without legislation), and Wisconsin. These states established state and local infrastructures for developing, providing, coordinating, and improving access to respite for all caregivers, regardless of age, disability, or family situation.

Connecticut Lifespan Respite Coalition is a nongovernmental, nonprofit organization founded in 2002. Its functions include advocating for a coordinated system of lifespan respite, regardless of the patient's age or diagnosis, identifying respite resources, and providing information to people who need respite. In 2003, the organization received a grant from the Department of Public Health to develop programs and materials for caregivers of children with special healthcare needs and developmental disabilities. The organization's website is at www. CTRESPITE. org.

In 2003, the legislature considered a bill, HB 6635, to establish a commission to study lifespan respite, but the Human Services committee reported a substitute bill to the floor that struck the respite content.

In 2004, the legislature again considered a bill to create a Lifespan Respite Commission to study and make recommendations on availability and delivery of respite services to people of all ages (HB 5391). The Human Services Committee favorably reported the bill to the Appropriations Committee, where it died.


January 31, 2007		2007-R-0160
LIFESPAN RESPITE

By: Helga Niesz, Principal Analyst