Briefing Sheet on Lifespan Respite Care

Briefing Sheet

Lifespan Respite Enhances Quality of Life for Caregivers and Recipients and Saves Federal Dollars

The American Psychological Association supports legislation that would coordinate funding and resources for accessible, community based respite care services available to all caregivers, known as the Lifespan Respite Care Act of 2003 (S. 538). Respite care would provide short-term relief to family caregivers of dependent individuals with disabilities and physical, mental, and cognitive impairments. This has become an increasingly needed service considering that:

Four million individuals with mental retardation or other developmental disabilities live at home with their families.
Approximately 18 million children have developmental, physical, and/or behavioral disabilities that significantly strain parental resources.
And about 26 million Americans shoulder the burden of caring for family members who are chronically ill or disabled.

Respite care is even more critical in light of the Supreme Court's Olmstead decision and the Bush administration's New Freedom Initiative, both of which require that resources be allocated to support the inclusion of individuals with disabilities in community life. Despite these initiatives, caregivers continue to face significant challenges:

Children with severe disabilities and their families experience significant amounts of stress related to their extensive care needs and the inability of families to adequately cope with meeting those needs.
A major problem facing parents of children with severe disabilities is the ability to obtain quality home health care on a consistent basis. Often families are provided with piece-meal services that do not adequately address their needs.
When parents experience high stress levels because of the immense responsibilities of caring for a disabled child, the child in turn experiences greater stress. This can have a negative impact on the child's disability.
Although respite care in a nursing home facility for the elderly is intended to be temporary, some research has found that as much as 42% of respite care placements became permanent. This may be due to the inadequacy of partial respite care to meet patients' needs consistently.
Many caregivers of the elderly face enormous responsibilities in addition to those involved with the direct care of the elderly person, such as caring for children and maintaining full-time employment. Due to the significant stress involved with these combined tasks, abuse of the elderly is more likely to occur when the caregiver has no support from outside sources such as respite care.

Respite care significantly benefits caregivers and recipients of care:

Research indicates that respite care decreases family stress and improves family functioning, life satisfaction, attitudes toward family members with disabilities, and the physical and emotional health of the elderly.
Adult day care programs serving elderly persons with disabilities provide family members a source of relief, and those caregivers report high levels of satisfaction with this partial respite care service.
Respite care allows caregivers to devote energy and resources to their own health and well being, as well as that of other family members.
These services provide caregivers additional support when they themselves are experiencing crises, such as unemployment, poor health, and other difficulties.
Respite care significantly decreases the need for costly out of home placements, such as foster care, hospitalization, and nursing home care.
By providing much needed relief to caregivers, respite care significantly reduces cases of child abuse and neglect, as well as elder abuse.

Barriers to obtaining respite care:

Many caregivers do not know that services are available or how to find information about respite services.
Existing respite care programs have long waiting lists, and most have criteria that exclude individuals in need of respite care services on the basis of their age, race/ethnicity, income, or disability.
There is a shortage of trained professional respite care providers and quality respite programs.
Many families cannot afford to pay for needed respite care services.

Lifespan Respite Care saves money:

A 1997 study by Metropolitan Life Insurance Company found that employers lose $11.4 to $29 billion a year due to costs related to employees missing work because of care giving responsibilities, workday interruptions related to caring for an impaired dependent family member, and quitting their jobs due to the significant caregiving responsibilities.
It has been estimated that the care provided voluntarily by family members would cost about $200 billion a year.

What needs to be done?

APA urges Representatives to bring the Senate-passed "Lifespan Respite Care Act" (S. 538) to the House floor and vote to pass the bill.

As passed by the Senate on April 10, 2003, the Lifespan Respite Care Act (S. 538) would authorize $90 million in competitive grants to states and other eligible entities to make respite available and accessible to family caregivers, regardless of age or disability. The bill would help support planned and emergency respite care, respite worker training and recruitment, caregiver training, and program evaluation.

American Psychological Association, July 2003