New Freedom Initiative -- Preliminary Report: Caregiver and Family Support

U.S. Department of Health & Human Services

Initiative ~ Executive Order ~ HHS Role ~ News & Additional Resources

Delivering on the Promise: Preliminary Report

Federal Agency Actions to Eliminate Barriers and Promote Community Integration

Caregiver and Family Support

There is little debate about the critical role that families and other informal caregivers play in supplying services to people with disabilities. Recent studies confirm that the vast majority of direct care (about 64 percent) is provided by families, friends, and neighbors. Among elderly persons needing assistance with activities of daily living, 95 percent have family members involved in their care. Unfortunately, despite the enormous contribution of family and informal caregivers to the community integration of people with disabilities, these caregivers receive little direct assistance and often face tremendous financial and emotional pressures. Inadequacies in family and caregiver supports such as respite services pose significant challenges to community integration for individuals with disabilities and their families.

A growing body of evidence confirms that the provision of supportive services can diminish caregiver burden, permit caregivers to remain in the workforce, and enable people with disabilities to remain in community settings -- possibly delaying or avoiding institutionalization. Federal government efforts to provide supportive services to family and informal caregivers are highlighted below.

Department of Health and Human Services

HHS will use the Administration on Aging's (AoA) National Family Caregiver Support Program (NFCSP) to assist states in the implementation of Olmstead. The NFCSP was launched in February 2001 and is currently funded at an annual appropriation of $125 million. It provides innovative and flexible service options for families and other informal caregivers of older persons, as well as for older caregivers of relative children, including children with Developmental Disabilities. The goal of the program is to help families maintain their loved ones at home and in the community. The program is being implemented in all 50 states and 6 territories through AoA's national network of State Units on Aging, Area Agencies on Aging, Tribal Organizations, and local service providers. States can use the program to serve caregivers of the non-Medicaid elderly population. The program serves an "early intervention" that can help caregivers early in their caregiving careers, long before they burn out.
HHS will provide states with a simplified model waiver on electronic media (for 1115 and other waivers) that offers both person-centered planning and self-directed service options. HHS will also develop technical assistance materials outlining existing options for states to develop flexible, cost-effective and consumer-driven methods of providing home health or personal assistance services.
HHS will seek authorization and funding from Congress to conduct a national demonstration that would allow states to include respite care (temporary care that offers support to family caregivers) for adults as a fixed budget demonstration. Unrelieved caregiver burden is a major contributing factor to institutionalization of individuals with disabilities. Respite care is the service most often requested by families in an effort to keep their family member with a disability at home.
HHS will seek authorization and funding from Congress to implement an evaluated, ten-year demonstration to provide essential relief to caregivers of children who have a substantial disability. The demonstration would be limited by the total national number of enrollees and would allow states to establish flexible respite services for such caregivers, tailored to the needs of individual families. This demonstration will help caregivers cope with the burdens and challenges of caring for a child with a disability, and allow HHS and states to obtain and evaluate specific data about the cost and utilization of these services.

Last revised: May 13, 2003