Children with disabilities face an uncertain future when they come to the end of special education programs and enter adulthood. If they don’t receive the social service programs necessary, they are unprepared for what lies ahead in terms of employment, education and independence. Although policies have changed to prompt better outcomes in these areas for adults with disabilities, the reality is often discouraging.
Encountering long wait lists for programs and suitable housing, most adults with disabilities are living at home under the care of parents or family members, nearly half are age 60 and older. As these caregivers age, their adult children become more isolated and find less opportunity to socialize, learn new skills and become part of their community.
Agencies like Opengate, which offer residential and day habilitation programs, have experienced reductions in state and federal funding, as well as policy changes with stricter requirements. To comply with these requirements, new housing facilities need to be acquired for meeting demands to provide placement of individuals with disabilities and the resources needed to care for them.
Recently a federal class action lawsuit was filed in New York naming Governor Cuomo and acting OPWDD Commissioner Kerry Delaney as defendants. The lawsuit states that there are over 11,000 men and women with developmental disabilities waiting for placement in certified housing.
“……defendants have failed, and are continuing to fail, to plan for and provide sufficient appropriate residential services, including supported community residential opportunities, necessary to prevent the unjustified isolation of adults with developmental disabilities and prevent the adverse impact on the residential caregivers for these adults.”
The impact felt by Opengate, and other agencies which serve adults with intellectual and developmental disabilities is enormous in terms of financial and budget changes to meet the criteria. To make room for more individuals, agencies are in a spiral of need; funds for new housing, hiring additional staff and maintaining the resources we currently have; many items which are not covered by state funding.
For aging parents, there are no concrete answers to what will happen to their adult children with disabilities left behind when they die. Although there are steps being taken to move well-supported adults out of institutional settings and into affordable housing, there are still many roadblocks, including an inventory of specialized homes.
To offer peace of mind to aging parents, agencies have stretched the limit of their donor bases. As the needs grow, and funding is reduced, we must rely more heavily on the private and corporate sector to fill the gaps.
We support the families filing the current lawsuit with expectations that they can find answers, and, just as important, bring needed awareness to an issue that doesn’t always relate to the public.