Family Support Legislative Agenda for the First Session of the 112th Congress (2011-2012)

There are approximately 4.8 million individuals with intellectual and developmental disabilities in the United States.  While over 75% live at home with family, most families receive few or no services and face long waiting lists for needed supports.  Life-long caregiving for individuals with disabilities, without support or assistance, has long-term negative economic, health, and social impacts on the well-being and quality of life of families.  Families with relatives who have developmental disabilities are more likely to live in poverty than other families.  Women, providing the bulk of informal caregiving, often juggle caregiving and employment.  As people with disabilities are living longer, siblings are playing increasingly important roles across the lifespan and frequently assume primary caregiving responsibilities when aging parents are no longer able.  Currently, there are over 730,000 people with developmental disabilities living with aging caregivers (over 60 years of age), a population rapidly growing and in great need of services and supports. 

The 112th Congress must strengthen the ability of families to support their relatives with disabilities by:

  • Significantly increasing funding and establishing a separate authorization level for the Family Support Program under Title II of the DD Act;

  • Maintaining full funding and ensuring oversight for a national clearinghouse and technical assistance center on family support;

  • Expanding the Family Medical Leave Act to cover more workers by reaching smaller employers and part-time workers; providing paid leave; and expanding the definition of covered family member to include, for example, siblings, grandparents, and domestic partners;

  • Fully funding the Lifespan Respite Care Act to help ensure the availability of respite care for families, regardless of age or disability;

  • Increasing funding to the Child Care and Development Block Grant (CCDBG) to expand child care services and provide technical assistance to child care providers so that they are better able to meet the needs of children with disabilities;

  • Improving and expanding adoption assistance and foster care programs to better address the multiple challenges facing children with disabilities and their adoptive or foster families;

  • Improving and expanding adoption assistance and foster care to promote and support parents with disabilities who wish to adopt or be foster parents;

  • Addressing inequities in access to and funding for direct support caregiver services for all Medicaid-eligible developmental disability populations;

  • Creating a registry, consistent with rights to privacy, to facilitate re-unification of individuals with disabilities who were  separated from their families during emergencies;

  • Expanding and increasing funding for the National Family Caregiver Support program to fully include caregivers of children and adults with disabilities; and

  • Providing a caregiver tax credit to assist families with out-of-pocket costs for disability-related expenses.

Legislative Agenda Partners

We are national organizations that serve and advocate for people with intellectual, developmental, and other disabilities. We work together to shape, expand, and protect a strong federal role that provides vital benefits, services and supports and assures civil rights for our constituency.