Parents of children with developmental disabilities live with the ever-present fear of growing old and dying.
It’s not that they are different than anyone else in concern over the unknown, but their worries increase exponentially because they do not know who will take care of their grown children.
These individuals with intellectual and developmental disabilities are unable to live fully independent lives. Some require just a little assistance. Others require full-time, 24-hour care.
The problem in New York is that it is increasingly difficult to find such care.
Special education classes provide valuable programs for school-age individuals. But problems arise when these students “age out” of the system.
Nonprofit organizations provide programming and much-needed assistance to families. The programs allow people with developmental disabilities to spend time in social settings with trained staff members to assist them in learning tasks many of us take for granted.
Many of these nonprofit programs are struggling to stay afloat as the state continues to close residential institutions and reduce funding for the organizations expected to pick up the slack. At a time when these nonprofits should be increasing staff and programs to deal with more clients, they are struggling to stay even.
Parents tell heart-wrenching stories of children who, when they graduate from school programs at age 21, are left with nothing to do and no appropriate housing options. They end up trapped in their homes.
Advocates say that more than 1,000 individuals in Western New York are waiting for a residential placement.
Officials of nonprofits that serve developmentally disabled people recognize that the state is dealing with lean times. The Developmental Disabilities Alliance of WNY, People Inc. and Aspire, to name a few, have a simple request of the governor: “Please don’t cut us again.” That’s it.
New York serves 126,000 residents with developmental disabilities. The task of helping most of them, about 110,000, falls to the state’s more than 700 nonprofits with 90,000 employees and annual budgets totaling $4.5 billion. The state directly serves another 16,000 New Yorkers. About 35,000 New Yorkers are in residential settings – which are becoming scarce – and about a thousand are in four institutions set to be closed soon.
Belts have been tightened. Nonprofits argue that the state’s budget for these services has been cut nearly $380 million since 2009. New York, they point out, has repeatedly promised to educate, serve and support New Yorkers with developmental disabilities. The state can’t fulfill that promise by cutting funding further.
The larger issue going forward is what to do with individuals who become too old for services provided to children and young adults. Leaving them at home doing nothing is not the answer. Imagining that their parents will live forever to take care of them is not a strategy. If the state doesn’t step up to help create a plan for these individuals, some will find their way into inappropriate institutions, such as hospitals, that will cost taxpayers more money than solving the problem in the first place.
Nonprofits play a huge role in helping state government provide critical services to individuals with developmental disabilities. But they have to have the resources to maintain those services.