The portrait of the District and its response to individuals with disabilities and their families in many ways reflects what is happening nationwide. Some of the greatest challenges faced by family support funded projects around the country included funding; absence of focused state leadership and collaboration; absence of “collaborative advocacy” among stakeholders to promote family support; needs of families not being addressed; and contextual issues such as the lack of culturally diverse staff. (National Center for Family Support)

Factors hindering effective interagency collaboration in 19 surveyed states included turfism among agency administrators; lack of funding across agencies intensifies competition for funds; historical differences between agencies re terminology, services mandates or mission or service practices; absence of a consensus vision for families and lack of effective leadership for such a vision. (National Center for Family Support)

Early arguments for family support were often based on cost-effectiveness issues, since family support would preclude expensive out-of-home placements. In several states, information was released to show that compared to out-of-home alternatives, family support is the least costly option and so should be vigorously funded. In support of state policy for care at home, it was reported that from 1980-90 Minnesota’s family support effort resulted in impressive cost savings to the state in relation to the number of children served. In 1980 the state was serving 50 families through a subsidy program and 830 children out-of-home. Over the subsequent ten year period, with policies enacted to promote care at home, the number of children living out-of-home was reduced from 830 to 291, the number of families served was increased from 50 to 1,827, and the amount spent increased from $20.4 to $24.3 million. This amounted to a 240% increase in those served with only a 20% increase in spending. (National Center for Family Support)

Nationwide, family support is under-financed, leaving many in need on waiting lists for residential, day, or family support services. Although only 13% of individuals with developmental disabilities live in out-of-home residential settings, resources for individual and family support remain low, comprising only 8.8% of federal and state expenditures for MR/DD services in fiscal year 1998. Unfortunately, many of the family support programs only target families of children. Over 218,186 families are estimated to be on waiting lists, including 65,290 families, many with elderly caregivers, waiting specifically for family support services. Over 80,000 adults are reported on developmental disability service systems’ waiting lists for residential services. (National Center for Family Support)

Aging family caregivers will likely grow as people with developmental disabilities live longer and the unmet need for residential services increases. Reports show that the mean age at death now range from the late fifties to the mid-sixties for adults with mental retardation. Among family caregivers of relatives with developmental disabilities, over 25% are over the age of 60 years.

To meet the challenges of greater life expectancy of adults with developmental disabilities, lack of family support options, insufficient funding of supports to “age in place”, and the waiting list crisis, it has been recommended that future policies:

Expand funding for family support from both developmental disabilities and aging networks

Develop family support models that allow for consumer direction and involve both the family caregivers and adult with developmental disabilities

Pass legislation that provides personal assistance services, assistive technology and other accommodations that enable adults with disabilities to “age in place”

Reduce waiting lists for residential services

Help families through the process of future planning (National Center for Family Support)

What becomes more apparent from these various local and national studies and reports, in addition to our parent observations, is the critical importance of using all of our resources more efficiently, effectively, and creatively for individuals with disabilities and their families, a guiding principle identified in a family support service coordination project funded by the District’s Developmental Disabilities Planning Council. The study suggests that service coordinators must begin where the family is with a person- and family-centered approach that recognizes each participant’s unique strengths. Families should collaborate in a family-professional partnership that faces the challenges posed and builds on what each partner brings to the table. Success, the study states (which reinforces one of our parent’s comments), is built on better communication that bypasses credentials and recognizes that how we communicate with each other is just as important as what we communicate. (Family Support Service Coordination Pilot Project)