By Reginald H. Turnbull, CELA

March is Developmental Disabilities Awareness Month, a time to reflect on the truly dramatic advances made by the special needs community, as well as the challenges remaining before us.

Families that have advocated on behalf of loved ones with disabilities are remarkable. They have consistently eschewed labels, fighting to eradicate use of the stigmatized term “mental retardation.” And they have increased public awareness to the point where models with Down syndrome grace magazine covers and actors with disabilities take to the screen.

Medical advances have lengthened the lives of those with special needs, and “person-centered” social services that focus on individual aspirations have been established to support them. I work with a woman whose daughter, born with a profound disability, was not expected to live beyond a year. This beloved child now attends day programs, enabling her mother to pursue a career. In times past, this youngster would have been institutionalized or relegated to a back room.

With IDEA (Individuals with Disabilities Education Act), the right of children with special needs to a “free and appropriate” education was legally recognized. Individualized Education Plans (IEPs) encourage students with special needs to become ardent self-advocates and to become confident concerning their abilities. Yet when they transition from the school system, their support network shrinks. They’re faced with high unemployment, long lists for residential placements, and government bureaucracies to which they must emphasize their disabilities in order to qualify for benefits.

Baby boomers represent the first generation to have resisted in large numbers the institutionalization of children with disabilities. But these parents are aging, and many of their adult offspring will become increasingly dependent upon government services when their family caregivers pass away. Will the necessary supports be in place to address their needs?

Budget discussions at all levels of government are imperiling the strides made by the disability community. Especially in states which choose not to accept the Medicaid expansion offered through the Affordable Care Act, special needs planning is more important than ever. Advocates must redouble their efforts to ensure that society lives up to the promises that have been made to individuals with special needs.

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