Everything gets more complicated as a special needs child ages. Yes, he’s getting older but he’s not necessarily getting more mature. And when he turns 22 he will age out of all the public school services to which he has been entitled. At the same time his caregivers—and those are usually his parents—are getting older, too. In one state alone, Illinois, there are more than 30,000 people with disabilities living with caregivers 60 or older. Multiply that by the number of states in the union, and you get a rough idea of the magnitude of the situation.
Jeannette Johnston of Decatur, Illinois is one of those statistics. Jeannette is a 63-year-old single parent whose developmentally challenged son, Joey, will turn 22 in September. At that point Jeannette will have to add “chauffer” to her long list of duties as Joey will no longer be allowed to take the school bus. He will also be graduated from his special program at a nearby community college. Jeannette will then be solely responsible for arranging her son’s volunteer work, socialization, and recreation. Although Joey is eager to use the public bus, Jeannette is afraid that he would get panicky if he debarks at the wrong stop or is harassed by other riders. It won’t be easy to juggle everything as Jeannette has to work to keep the family afloat. While she gets some compensation from the government, it’s nowhere near enough to live on.
Joey’s impending milestone reminds Jeannette that she better hurry up and get a trust in place before she has a health crisis that will prevent her from caring for her son. She is also on the hunt for a small group home, which she sees this as the next step in his life’s journey. A small group home would provide a structured schedule, mealtime preparation, transportation and, according to Jeannette, “A chance for Joey to be all he can be.” Unfortunately, such ideal living situations are hard to find and the list to get into them is long. Some parents are so frustrated by the wait that they are even seeking to turn their own homes into group living situations. To help them the State of Illinois is reportedly working to make housing decisions for this population "more self-directed.
In the meantime, like most principal caregivers, Jeannette is mentally and physically exhausted from the strain of caring for her son 24/7. “More often than not I feel helpless,” she says. The government is of little help. Of the roughly 220,000 Illinoisans with disabilities, fewer than 28,000 are receiving services from the state. Working in isolation, with no specialized training, little support, and meager psychic return, it’s no wonder caregivers are at wit’s end. A caregiver support group can provide some solace. Here, the Jeannettes of the community speak frankly about the isolation their children face, their kids’ medical, mental and developmental needs, and the money it takes to provide for it all. They get answers to their questions hear from the experts, but the real value is hearing from other parents whose testimony validates their own concerns and deepest fears.
The future is never far from these parents’ minds. Says Jeannette, “As I would with any child, I want to keep my son moving forward. The key is finding the right place for Joey. Wherever he lands up, I want him to feel safe, happy, and supported. That’s when I’ll finally be able to draw a deep breath, knowing that even without me, he’ll be okay.”
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