The vast majority of people with IDD live in the family home and families are overwhelmingly the primary source of support for their family member with IDD. Changing demographics are resulting in even greater demands on these family caregivers. The aging baby boom generation of caregivers has unique need for family support, such as assistance in developing desired in-home support plans or transition plans to community living for their family member with IDD when they are no longer able to continue in their caregiving role. In addition, an increasing number of persons with IDD are becoming parents and may require more support navigating service systems for their own children.
State IDD service systems are increasingly being built around the expectation that adults with IDD will reside in the family home. This is not consistent with other national policies for vulnerable populations. Nor is it consistent with the vision of self-determination.
Unfortunately, the increasing reliance on families is not being met with commensurate support. A generation ago, families were discouraged from keeping their family members with IDD at home and encouraged to use costly publicly financed institutional placements. Today, they face the other extreme where they are expected to be willing and able to provide lifelong support to their family member with IDD in place of appropriate community supports, even in cases when residing in the family home may not be a good option for adults with IDD or the family caregivers.
There is no comprehensive family support system in the U.S. Instead, the vast majority of publicly provided family support services are funded through Medicaid home and community-based services (HCBS) waivers and some states provide limited family support using state general fund dollars. Consequently, beneficiaries of family support experience the same portability and mobility limitations as those receiving other Medicaid HCBS. This affects families (including military families) who either have to relocate to another state and begin the application and waiting process anew or who have to forfeit personal or career opportunities in other states.
Relatively small proportions of federal and state funding for persons with IDD are committed to family support, despite increasing numbers of people with IDD living with family for longer periods. Consequently, though family support is often critical for avoiding more segregated placements in costly and inappropriate institutions for the family member with IDD, the needed supports are frequently insufficient or unavailable.
Comprehensive, universally accessible family support must be provided in order to strengthen families socially, emotionally, physically, and financially. It must:
- Strengthen the caregiving efforts of families, with special emphasis on their emotional and physical health, financial and material needs, and parenting and family interaction;
- Enhance the quality of life of all family members, and increase their access to supports and services for themselves and their members with IDD;
- Create and provide meaningful support to parents with IDD designed to ensure maximum opportunity for family wellness and cohesion;
- Enable families to make informed choices regarding the nature of community supports for themselves and their members with disabilities, including the use of supported decision making for family members with IDD;
- Help families with minor members to stay intact, preventing any type of out-of-home placements for a minor child, particularly institutions or congregate settings;
- Ensure that all employed caregivers have access to comprehensive paid leave, including job protection and sufficient wage replacement;
- Provide information, resources, and support to families of people transitioning from institutional placements to community homes;
- Provide support for families navigating systems of care, including early intervention, education, mental/behavioral health, and other systems;
- Provide information and support for siblings to better prepare them to be advocates and caregivers; and
- Ensure aging caregivers are able to provide care for their loved one as long as necessary and appropriate while honoring self-determination.
Policies of family support and public and private systems for supporting families must:
- Recognize that relying on families to provide lifelong care cannot be a substitute for creating a national solution to provide appropriate long term supports and services;
- Be addressed in conjunction with the HCBS waiting list and direct support professional (DSP) crisis for family members with IDD;
- Be prioritized for when the need is most acute, such as when caregivers first receive a disability diagnosis for their child; during service system transitions or personal crises; and at the end of life;
- Be provided in a manner that builds on the family’s strengths;
- Be provided in ways that are sensitive to the family’s cultural and linguistic backgrounds, immigration status, values, religion, LGBTQ+, and socio-economic status;
- Assist the individual and family to maximize self-determination of the individual with IDD;
- Assist parents with IDD in being self-determined in creating supports around their family;
- Be controlled, determined, and directed by the family itself, in partnership with those who provide the service;
- Be provided through best practices and state-of-the-art methods;
- Be available to all families regardless of whether the person with IDD resides in the family home or is presently receiving publicly funded services;
- Provide options for family members to be compensated for their time providing essential supports at home. These choices should be available throughout the lifetime of a person with IDD and subject to change as the person’s and family needs or wants change; and
- Be defined as a comprehensive system of policies, practices, and procedures for supporting families, and not just “family support” programs sponsored by a government or private-sector entity.
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).
1Traditionally, government-sponsored family support has consisted of: 1) Cash assistance from federal, state, and local governmental sources that is provided: a) Over and above any other federal cash benefit or medical, educational, or welfare benefit programs (including those under any title of the Social Security Act, Individuals with Disabilities Education Act, and Developmental Disabilities Assistance and Bill of Rights Act); b) Because of the disability of a family member ; and c) To the family as the primary beneficiary of the family support program; 2) Information and emotional and instrumental support provided by: a) Professionals, including those in generic (non-disability)-and disability specializing professions and entities; b) Friends or members of the individual’s family; and c) Entities that support families or parents, including parent-to-parent and community-based family resource centers, or 3) Any combination of the above. Specific examples of family support services are respite, counseling, cash assistance, training, support groups, minor home modifications, and information and referral.
2Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood). Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.
The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.