For three years, the yellow kitchen in Veronica Pollack’s suburban Chicago house looked like a demilitarized zone. The Pollacks tossed food into footlockers they hauled into the garage every night. And the fridge, with its magnets and snapshots of the girls, was locked.
“We got some playground chain, like you would maybe use to hang a child’s swing, and we tied it around the refrigerator and freezer handles,” she says.
The Pollacks locked down the kitchen when Veronica’s brother Vincent moved in. Vincent has Fragile X syndrome, the most common cause of inherited intellectual disability. At 5-foot-8, 340 pounds, Vincent had a bad late-night snacking habit, Veronica says, where “he got up and ate a lot of things that you would not even considered to be food, cake mixes and flour.”
Vincent came to live with Veronica after their mother died suddenly. Caught without a plan, the entire family found their life turned inside out. Veronica had to leave the workforce. And Vincent, as soon as he left his mother’s home and crossed state lines, lost all of his social services apart from Social Security and Medicare.
This awful situation is playing out more and more as older parents become unable to care for their cognitively impaired children, and as the children age out of services. Over the last couple decades some people with these disabilities are living a lot longer. Between 1983 and 1997, life expectancy for individuals with Down syndrome nearly doubled from 25 to 49. Today, some 855,000 intellectually disabled Americans live with a caregiver over 60.
The Arc of Philadelphia executive director, Tanya Regli, sees the fallout for her clients as their parents get older.
“People who are either ending up homeless, or ending up stuck in their homes,” she says. “People suffer and end up not getting the kinds of supports they need to live.”
A new paper from Harold Pollack, a University of Chicago health policy professor, says many families are in a kind of quiet crisis, where they lack resources and long-term planning. He says the rest of us haven’t caught up to the new dilemmas that come from aging.
“We really have to do a much better job of helping these families work out the very predictable transition issues they are facing,” he says.
This isn’t just academic for Pollack. He’s also Veronica’s husband. After interviews with 40 families, he found people often are stuck on long waitlists for transportation, job training and housing.
“You know, many states, it turns out, it’s 6 or 7 years for a spot to get into a residential placement,” he says.
One idea, Pollack says, to help people map out the future is to automatically enroll a child into a savings account, what’s called an ABLE account, at diagnosis. Taxpayers could kick in something modest, say $300 every year, and families can contribute, too, tax free.
So by the time a child reaches 21, there’s a nest egg for an at-home aide if a parent gets sick, or to hire a lawyer to pilot through a bureaucratic maze. Veronica Pollack certainly would have liked something like that.
“I don’t think it would have solved every problem, but I think having that kind of money available would have been very helpful,” she says.
Today, the chain is long gone from the Pollack’s fridge. Life is calmer. The way Veronica sees it, the country has a contract with her brother, to make sure he lives as independently as he can for however long he’s around. That's something he’s doing today, thanks to housing and vocational support.
“Vincent’s skills have grown over the years. He’s more expressive. This growth is as a result of him living with a group of men who he’s friends with,” she says.
Vincent might still be waiting for services if he didn’t have a nurse for a sister and health policy professor for a brother-in-law. The Pollacks say they’re pretty lucky.
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