After parents' home, then what?

Envisioning a place for autistic adults

Norman Camp IV is a man in a hurry. He walks into a meeting room at his workplace, Wake Enterprises, and wordlessly holds his mother's car keys up to her.

"You know what that means? When he gets off work, he's ready to go!" Betty Camp says, smiling.

In an N.C. State University sweatshirt and jacket, Norman IV, 45 years old and 6 feet 4 inches tall, goes to the car to wait for his mother to drive him home to Southeast Raleigh after his day of putting together electricity-meter elements.

Betty, at 73, and her husband, Norman, 72, feel a different kind of urgency: They want to know that their son, who has autism and doesn't speak, will have a safe, understanding place to live when they are gone.

Like more than 700,000 other U.S. parents and grandparents over 60 who take care of adult children with disabilities, they've got tough arrangements to make, plans that will be needed long after they die.

The Camps, veteran activists for autism-related causes, have joined with others to form a group called the Autism Community Initiative. Its single goal is to build a model community that someday could be a home for adults with autism. Autism is a developmental disorder typically characterized by impaired social skills and difficulty in communicating.

The community is proposed in a semi-rural setting of 40 to 60 acres, with duplexes and cottages eventually housing 45 people.

It would include staff specifically trained to interact with people with autism. It would provide access to public transportation, workshops and a life skills and vocational program. It could also serve as a training ground for students and faculty, including those from UNC-Chapel Hill.

"For quite some time, we have been thinking about this with like-minded parents," says Santosh Gaur, 57, an IBM engineer and father of 25-year-old Manu, who has autism. "Someone has to have a huge commitment to take care of someone like this."

No final cost has been compiled, but it is likely to be in the millions of dollars. The group is hoping to get state and federal money, in addition to doing private fund-raising. Group members said they are ready to start letting the N.C. General Assembly know about the need for it.

"It is certainly something that I would be willing to be the point person on," said state Sen. Vernon Malone, a Democrat from Wake County who is co-chairman of the Senate committee on appropriations on health and human services. He noted that the proposal "would be something we'd have to weigh against other pressing needs."

Jean Farmer-Butterfield, a Democratic state representative from Wilson and Edgecombe counties who is also director of the Arc of North Carolina's statewide Life Guardianship program, says the parents have a job ahead to advance their cause.

"They are going to have a true picture of the actual cost and find out whether these models are successful in other states," she says. But as director of a program that assists people with disabilities, she says, she understands the need.

"Parents are looking for someone else to do it when there is no family member to do it," Farmer-Butterfield says.

Her program handles legal and some personal decisions for more than 350 North Carolina adults with disabilities, acting as guardian by deciding such issues as whether they should have surgery, move from one group home to another or change medication.

The place in the country might work well as a later-life home for Hayden Goetz, 12, son of Andy and Cathy Goetz of Cary. The Goetzes are both 45 but are already making plans so that Hayden, who loves to be around animals, can be assured of a home for life.

"I think all parents wonder what's going to happen when he gets older and we get older," Andy Goetz says. "We have not made any plans to say where he's going to be, what kind of facility. But we have taken steps financially to make sure he is in a situation where he'll have support."

The Goetzes want to make sure that their younger children -- Hannah, 10; Morgan, 9; and Gracie, 4 -- aren't faced in later life with the responsibility of looking after Hayden.

But having siblings or other family members take on the responsibility for a disabled loved one is among the most common solutions. The Camps have lined up a cousin, Todd Gaines of Augusta, Ga., to look after Norman IV's interests after they die.

In addition, parents can also set up special-needs financial trusts through private banks or lawyers to assure that adult children with disabilities have money to pay daily and long-term living expenses. One agency, Life Plan Trust, is a private nonprofit that sets up various sorts of plans, including financial, for future care for people with disabilities.

"We are more familiar with the needs of those populations," says Susan Hartley, Life Plan Trust executive director. "We have a lot of experience in dealing with Medicaid and the Social Security Administration in what are allowable disbursements and what are not."

Life Plan Trust can even make sure that survivors with disabilities get regular visits and birthday presents.

"A lot of parents tell us that this peace of mind is wonderful for them," Hartley says.