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Fair helps families with transition

Children with disabilities face challenges at age 18

POSTED: July 11, 2008 5:01 a.m.

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For most children, their 18th birthday is an exciting time as they look forward to college, careers and living on their own.

But if the child has a disability, turning 18 is a milestone fraught with uncertainty.

"A lot of teenagers don’t know what they’re in for, and their families don’t either," said Robin Neiheisel, a social worker with Children’s Medical Services in Gainesville. "They don’t realize that they lose their Medicaid when they turn 18. They may find themselves with no safety net whatsoever, and a lot of private insurance companies will drop them."

Parents also may not know that once their child is 18, they can no longer make medical decisions regarding care, even if the child is so disabled he cannot speak or feed himself.

"Parents should be seeking legal guardianship, and that’s a process that has to go through the court system," Neiheisel said. "Many parents are not familiar with that process."

To help families who may be facing this situation, District 2 Public Health is sponsoring a "Transition Resource Fair," set for 1 to 7 p.m. Thursday at the Gainesville Civic Center.

Organizers are targeting families with disabled kids age 14 and older, but the free event is open to parents of children of any age who have a disability.

More than 30 state agencies and nonprofit organizations will offer information on topics such as education, employment, housing, medical assistance, insurance, transportation and estate planning.

At 2 p.m. and 5 p.m., Hall County Probate Court Judge Patti Cornett, along with attorney J.C. Highsmith Jr., will give presentations about the legal issues confronting disabled teens and young adults.

In the eyes of the law, 18-year-olds are adults, regardless of disability, and they have the same rights and responsibilities as anyone else. They can vote, they can register for military service and if they commit a crime, they will be tried as an adult.

They also are expected to make their own decisions on their medical care, unless that responsibility has been transferred to someone else.

"If a parent does not get legal guardianship, a court may have to make the medical decisions (when the child is not able to do so)," Neiheisel said.

"Some parents think they’re going to live forever. I’ve seen cases where parents who are in their 80s are caring for a child who is now in his 40s. The parents die, and no provisions have been made (for the child’s future care)."

Neiheisel said every parent of a disabled child needs to consult with a lawyer about setting up a special needs trust and obtaining health care power of attorney. Thursday’s workshops will help parents learn how to do that.

But many families still think they can go it alone, with no outside help.

"It can get really sad and really desperate," Neiheisel said. "I’ve seen parents, even grandparents, with severe back problems because they’re still lifting a child who’s now grown up and weighs close to 200 pounds."

Cynthia Myers, program director for the Disability Resource Center in Gainesville, said help may be available, but only to those who know how to seek it out.

"Lots of times there are people who just fall through the cracks," she said. "Parents really just don’t know what is out there for their children."

Transitioning — making the sudden change from childhood status to legal adulthood — can be overwhelming for families who are just struggling to get through each day.

"It’s a very big concern. There are so many questions that need to be answered," Myers said. "We (at the Disability Resource Center) developed a transition manual that we’ve put in all the high schools."

Thursday’s event has much the same goal, but with an emphasis on making the information more accessible.

"We’re trying very hard to have as many interpreters there as possible," Neiheisel said, noting that transitioning is even more difficult when the parents of a disabled child cannot speak English.

She said one reason parents don’t prepare for the future is that they’re reluctant to acknowledge they won’t always be around for their child. But families need to have serious discussions about the issue, she said. "If they possibly can, teenagers need to talk about living independently, finding employment and taking charge of their own health care."



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