Planning for the future differently from the past

There was a time in human history -- not so very long ago -- that “quality of life” was a term rarely reserved for certain classes of people.

People with disabilities, particularly with profound mental and physical disabilities, were rarely discussed by family members. Particularly when they reached adulthood, they were shuffled off to special facilities and all but forgotten by society.

Today, the conversation is a very different one.

With ever-growing resources, outlets and options, families are increasingly finding the empowerment to give children, brothers and sisters a different kind of life than they would have had one or two generations ago.

The public school system in America has evolved to embrace the rights and needs of children of all abilities. It’s a recognition that just because a child doesn’t learn in the same way as “typical” kids, there is absolutely no reason to cut that child off from the opportunity to learn and grow mentally. For a lot of children with special needs, it’s anyone’s guess what sort of remarkable things go on in their brains.

Extra Special People formed to fill in some of those gaps that are left when school lets out for the summer. Instead of allowing special-needs children to languish at home during the summer, founder Martha Wyllie wanted to give those kids options for socialization and recreation for at least a few weeks.

But what happens when school lets out for good? Some ESP’ers completed high school and have some of the basic skills needed to care for themselves or hold small jobs. But what does life look like for them as they reach adulthood? Could they ever live on their own? If so, what type of support do they need? If not, how do they live a full life?

They are questions some 40 families at ESP are grappling with -- that’s how many kids 18 or older use services at ESP.

ESP is committed to continuing to serve those young adults. They have their own club, coined “No Kids Allowed” (or NKA) by its members. They meet once a month for weekend outings. During ESP summer camp, they spend a week going out into the community to do service work.

There have been discussions at ESP, particularly among board members, about what to do with these older participants.

When the idea of an age cap was introduced, Executive Director Laura Whitaker was adamant: there will always be a place in the organization for these kids, even when they cease to be kids and they enter adulthood. It’s a recognition of the fact that ESP forms a vital link in the chain to giving these young adults quality of life.

Some of these young adults, now in their mid- to late-20s, have essentially grown up with ESP. Campers like Ruthie Hartell have attended ESP camp for 14 years. Ruthie’s best friends are all ESP’ers.

That connection was evident at a recent meeting of some of those 40 families in a church basement in Athens. There, a group of parents, many of their children, and a handful of UGA students met to talk about not how to replace ESP services, but how to supplement them.

“There are a lot of different funding avenues for adults with disabilities that ESP doesn’t tap into because ESP doesn’t primarily serve adults with disabilities,” Whitaker said recently.

ESP is growing, having just launched a three-year, $5.8 million capital campaign. But, a new building is several years down the road, and an expansion of programs is going to have to align with the physical expansion and staffing expansion of the organization.

For these parents, their kids’ future can’t wait. They want more for their children than would have been expected 30 years ago: ongoing human contact and social stimulation, opportunities to contribute to society, and a sense of self-worth and purpose. It means finding opportunities and empowerment to tap into some of those funding avenues themselves.

Their conversations are in the early stages, but they’re being led by a couple of dedicated parents who have a history of advocating for their kids: Joan Baird, an ESP parent, board member and special-education teacher in Madison County Schools; and Patricia Nobbie, an ESP parent and the deputy director of the Georgia Council on Developmental Disabilities (GCDD). The initiative with ESP parents is a torch Pat Nobbie has long carried, as her daughter, Mia, who has Down syndrome, has gotten older and remained an active member of the community.

The GCDD is undertaking a similar effort across the state: the Real Communities Project, talking to people about how to pool resources to better care for the disabled and infirm in their communities (including the elderly and veterans).

It includes discussions around topics like employment for adults with disabilities.

“The visions that people have for working (among people with developmental disabilities) are very narrow,” Nobbie said. “How do we get out of that?”

That conversation could take a lot of forms. For now, ESP parents talk about the dream of their children helping run a business -- like a coffee and bake shop -- together.

It takes someone dedicated to coordinate such an enterprise, they admit, and looking around the room at the tired faces of many parents, it’s a wonder they find the energy to do more than just help their special kids get by from day to day.

So for now, they are just discussing basic ideas in concrete terms: taking turns hosting sleepovers, coordinating weekend outings at public parks, and working to access existing services as well as get resources from the state to start doing more.

From there, these parents hope they can build the bridge toward a better future for their kids.

Pat Nobbie summed it up when she talked about a recent state meeting about provider rates at service centers for adults with disabilities. Many were in their 50’s and 60’s, and according to family members, if they weren’t able to go to such service centers, these folks would sit at home alone all day.

“I don’t want another generation of that happening,” Nobbie said to the parents perched on couches in this church basement. “I want our kids to know people out in the community that will be their support system. Yeah, we’re all going to die and they’re probably going to outlive us. ... They need friends and neighbors who care about them.”

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