AAIDD POSITION STATEMENTS

AAIDD/ARC Position Statements

FAMILY SUPPORT

POLICY STATEMENT

Most people with mental retardation and related developmental disabilities need the support of their families, communities, and government to develop to their fullest potential. Family support must be expanded to strengthen the capacity of family members to support each other at home.

ISSUE

Some families may lack the necessary resources to support their family member with disabilities at home. Less than 2% of state and federal disability funding is dedicated to family support, even though national studies show that the overwhelming majority of our constituents live at home with their families. Families traditionally have been offered few support options beyond out of home placement when in fact they need services such as respite care, home modification, and cash assistance. Even when family supports are available, qualified workers may not be.

POSITION

Family support options must be family-centered.

Family supports should be responsive to the needs of the entire family unit, flexible enough to accommodate unique needs, and enabling and empowering for families to make informed decisions.
Because each family is unique, family support cannot be viewed only as services offered by professionals (e.g., respite) or as a single program (e.g., cash subsidy). Rather, it must comprise a flexible network of public services plus other supports capable of bending to meet individual family needs.
Family supports must allow for diverse approaches. No single approach to supporting families is likely to work with all families. Differences in family type, culture, income and geographic location require diversity in the approaches. To be most effective, support services must be consistent with the cultural preferences of individual families.
Supports are most effective when their source is closest to the family. The supports should give families control of the services they need.
Families should be assisted in weaving together the multiple existing sources of help and the informal networks into a cohesive circle of support to meet the needs of both child and family. Families need informational, financial, and emotional support to promote full inclusion and enhance their family's quality of life.

Fiscal and other public policies must support families.

Families need to play a leading role at the national, state, and local levels by helping to design family support policies.
Family support in both absolute dollars and as a percentage of public funding should increase.
Parents or other family members must not be charged for government-supported services rendered to their adult sons or daughters with mental retardation.
Existing policies must be changed so that parents who have minor children living at home may be paid for certain child care activities beyond those required by children who do not have a disability.
Federal, state, and local governments must recognize the important role played by parents when they keep their children with mental retardation and related developmental disabilities at home. Doing so benefits society (by saving public funds on out-of-home placement services) and children (by enabling them to live with their families).

Adopted: The Arc, Congress of Delegates, November 9, 2002
AAIDD Board of Directors, May 28, 2002