The Lifespan Respite Act
Family caregivers are providing 80% of long-term care in the United States. This level of care has been valued at $306 billion a year, more than what is spent on nursing home and paid home care combined.
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.
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.” Specifically, the law authorizes funds for:
- Development of state and local lifespan respite programs
- Planned or emergency respite care services
- Training and recruitment of respite care workers and volunteers
- Caregiver training
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.”
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.
