Individuals with I/DD frequently require support to perform basic daily activities and to achieve the national goals of equal opportunity, full participation, independent living, and economic self-sufficiency. Families are overwhelmingly the primary and often the major source of support for their family member with I/DD. Nearly three quarters of people with I/DD live in the family home and, according to The Arc’s Family and Individual Needs for Disability Supports (FINDS) survey, most of these family caregivers provide more than 40 hours of care per week (including 40% who provide more than 80 hours of care per week).
Changing demographics are placing even greater demands on this already limited service system. The aging of the baby boom generation is resulting in an increasing number of people with I/DD living with aging caregivers. These aging caregivers will have greater 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 I/DD when they are no longer able to continue in their caregiving role.
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 I/DD 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 I/DD in place of appropriate community supports, even in cases when residing in the family home may not be a good option for adult offspring with I/DD or themselves.
Our service system is increasingly being built around the expectation that adults with I/DD will reside in the family home. This is not consistent with other national policies for vulnerable populations.
Relatively small proportions of federal and state funding for persons with I/DD are committed to family support, despite increasing numbers of people with I/DD living with family for longer periods. Consequently, though family support is critical for avoiding placement in costly and inappropriate institutions for the family member with I/DD, the needed supports are frequently insufficient or unavailable.
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 mobility and portability limitations as those receiving other Medicaid HCBS. This problem is most acutely felt by military families who move frequently and have to begin the application and waiting process anew with each move between states.
Although family support has been a policy of the federal and state governments since the 1980s, families and individuals with I/DD increasingly are using their social capital to achieve the four national goals and attain quality of life outcomes, and are also benefiting from and seeking more policies, practices, and procedures of generic governmental and private-sector entities that support families. Families’ reliance on social capital and these other means for supporting families have become important as supplements to, not replacements of, governmental-sponsored family support programs
Comprehensive, universally accessible family support must be provided in order to:
- Assist families as they guide their member with a disability toward being self- determined individuals and achieving the nation’s goals for people with disabilities as set out in federal legislation, namely, equal opportunity, economic productivity, independent living, and full participation;
- 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 I/DD;
- Recognize that relying on families to provide care cannot be a substitute for creating a national solution to provide appropriate long term supports and services;
- Enable families to make informed choices regarding the nature of supports for themselves and their members with disabilities, including the use of supported decision making for family members with I/DD; and
- Help families with minor members to stay intact, preventing any type of out-of-home placements for a minor child, particularly institutions.
Policies of family support and public and private systems for supporting families must:
- Be provided in a manner that builds on the family’s strengths;
- Be provided in ways that are sensitive to the family’s culture, religion, and socio-economic status;
- Assist the individual and family to maximize the self-determination of its member with I/DD;
- 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 family caregivers, including, but not limited to, parents (including those with I/DD themselves), adoptive parents, foster parents, siblings, uncles, aunts, cousins, grandparents, grandchildren, and individuals who are in spousal-equivalent relationships;
- Be available to all families regardless of whether the person with I/DD 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, while ensuring that such arrangements are mutually desired by the family caregiver and member with I/DD and do not impose inappropriate barriers under the guise of regulating medical services provided by paid family caregivers (such as requiring a nursing license to provide g-tube feeding or insulin shots as part of respite care); and
- Be defined as a system of policies, practices, and procedures for supporting families rather than as a “family support program” sponsored by a government or private-sector entity. Increasingly, these individualized supports should be available from generic (non- disability-specific) governmental and nongovernmental entities.
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).
1Traditionally, government-sponsored family support has consisted of the following types of support: 1) Cash assistance from federal, state, and local governmental sources that is provided: a) Over and above, to supplement but not to supplant, any other federal cash transfer or medical, educational, or welfare benefit programs (including without limitation 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 member of a family; and c) To the family as the primary beneficiary of the family support program, not to the member of the family who has a disability as the primary beneficiary; 2) Information and emotional and instrumental support provided by: a) Professionals, including those in disability-specializing professions and entities and those in generic, non-disability specializing professions and entities; b) Members of the family of the person with a disability or friends of the family or person; 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.
2“People with intellectual disability (ID)” refers to those with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18,” as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). “People with developmental disabilities (DD)” refers to those with “a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language, (III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated,” as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language, people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.