A place for people 'on the bubble'

GENOA – An innocent query at a family gathering four or five years ago gave Deanna Thornton a swift reality check regarding the future of her daughter Grace Atwater, who has Down syndrome.

“At a Christmas dinner we were asked, ‘What’s Grace going to do after high school?’” Thornton recalled.

Like all other people with disabilities, Grace, 20, is legally entitled to adaptive education, physical therapy and occupational therapy through the school system until her 22nd birthday. After she turns 22 in January 2014, the school-based support network disappears.

Grace’s predicament was the driving force behind the creation of the Gracie Center, which Thornton and several other families are planning to build in rural DeKalb County. The organization is in negotiations with a local farmer, whom Thornton declined to name, to secure land where it can build several small group homes. The center could accommodate up to 30 clients total, with three to four in each group home.

The Gracie Center will be central to DeKalb, Sycamore, Genoa, Belvidere and Rockford, and it will complement similar nonprofit organizations like Opportunity House in Sycamore.

Like The Gracie Center, Opportunity House began as a group of concerned parents who wanted to find local vocational training for their children. Opportunity House was incorporated in 1963.

“I think they are trying to address that un-fundable population,” said Bob Shipman, executive director of Opportunity House. “We aren’t able to meet that need to the extent that we would like to.”

While the Gracie Center hopes to operate without Medicare or other government funding and the stipulations that are tied to that funding, Opportunity House relies largely on state and federal funding for its operations. Much of the funding is directly dependent on the severity of the disabilities of Opportunity House clients. Some clients who are highly functional but still unable live on their own are not eligible for government funding.

Opportunity House provides services to four clients who are not eligible for state funding, which puts additional strain on the organization’s already-tight budget.

“They are right there on the bubble and we have to wonder, ‘How can we meet their needs?’” Shipman said.

Julie Craig’s daughter Kayla, 17, has cerebral palsy and is on that “bubble” between eligibility and ineligibility for state aid. Kayla will face a sharp decrease in services when she turns 22.

“Kayla is going to need something alternative because her IQ is two points too high and her vision isn’t low enough to qualify for blind services,” said Craig, who is one of seven board members for the Gracie Center.

The Gracie Center received 501(c)(3) status from the Internal Revenue Service in October. The center’s board of directors estimates that it will have to raise $600,000 to build the center and operate it for the first year. At the center’s “Gutter Gains for the Gracie Center” bowling fundraiser on Nov. 7, organizers raised $2,700. The center hopes to raise the rest of the funds with other fundraisers and grants.

“The local grants are going to be something we really focus on,” Atwater said. Atwater and fellow board member Susan Colgan of Genoa will do a bulk of the grant-writing. They estmate the task will become the equivalent of a full-time job.

In addition to caring for Kayla at home, Craig is a teacher’s aide in the transition program at Genoa-Kingston High School. She knows firsthand how well people with disabilities can thrive if they are given the encouragement, guidance and resources to live up to their potential.

When Kayla was born, doctors told Craig that her daughter would never walk, talk or see. With perseverance and determination, the Craig family has helped Kayla become a functional and sociable high school junior who plays golf with the school’s golf team.

“When someone says that she won’t be able to do something, I tell them to hold onto their hat and watch,” Craig said.

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