Aging parents worry about disabled kids

Jessica Funkhouser’s specialty is putting together small clamps that attach conduits to the wall, but she has big dreams. At 28, she likes dragons and dinosaurs, heavy metal music and history. She wants to be a writer.

At Pride Industries’ Auburn workshop in California – where her father, 61-year-old Tom Funkhouser, a Navy veteran and Hewlett Packard retiree, works as a production trainer across the floor from Jessica’s work table – she puts on her turquoise earphones and deals with the clamps.

“I usually just do clamp, clamp, clamp,” she said.

But she’s working, and she likes that.

When she was born with a rare genetic disorder causing developmental disabilities and physical challenges, doctors told Tom and Patti Funkhouser that their tiny, dark-haired daughter would never walk or talk. She probably wouldn’t even survive childhood, doctors said.

“They said Jessica would be a vegetable,” her father said. “They said we should institutionalize her. But Patti and I are not that way. We were terrified, but we brought her home, and we loved her very much.”

Four years later, the couple’s younger daughter, Lori, now 24, was born with the same disorder. The daughters have autosomal recessive microcephaly with agenesis of the corpus callosum, a heavy-duty term that means, among other things, that the two hemispheres of the brain can’t communicate normally.

Now Tom and Patti, who have no other children, are facing the issue that haunts parents of adult children with special needs: What happens to their daughters after they’re gone?

“We just hope it doesn’t come to that point, but I know it will,” said Patti, 55. “I worry about it. We’re getting older. What do we do? Right now, we’re taking it day to day.”

Across the country, according to U.S. Census figures, 20 percent of adults below age 65 have developmental or physical disabilities – and almost 70 percent of the families of special-needs adults in a recent MetLife survey said they worried about their offspring’s future.

The Alta California Regional Center, which serves 18,250 people with developmental disabilities in 10 counties in California, has about 5,000 adult clients who still live at home with their parents, just as Jessica and Lori do.

“And every one of those clients will age,” said Phil Bonnet, the regional center’s executive director. “People who grew up in our system are now middle-aged, and their parents are older.”

As a result, said the executive director of Sacramento’s Resources for Independent Living, Frances Gracechild: “We have this phenomenon of aging parents with increasing need for support themselves, and they’re still taking care of their grown developmentally disabled children.

“It’s quite a burden to meet when you’re facing your 70s.”

As they age, the parents of the adult developmentally disabled may need legal counseling to put together a special-needs trust to care for their offspring, and they may need advice on residential options, said Fran Smith, a Yolo County, Calif., advocate for the developmentally disabled. Two of her children had cerebral palsy.

“I was always worried about what my kids would do when I die, but they both predeceased me,” she said. “Parents need a coach. They need somebody to help them. Thinking about what will happen to your grown child after you’re gone is painful.

“I’ve heard people say, ‘I’ll think about it when I’m older,’ and they’re in their 70s.”

The Funkhousers are diligently putting together employment and independent living skills for Jessica. She has worked for Pride for six years, a little longer than her father has coached other employees - but not his own daughter - on their product assembly skills.

Her parents say that Jessica’s patience and social proficiency have improved over that time. Now, with the help of her Pride counselor, she’s working on becoming more punctual.

But she’s in no rush to live on her own.

“I’ve thought about living independently many times,” she said, “but I go right back to the fact that I want to live with Mom and Dad. I depend greatly on my mom. When I’m away from home, I feel lonely. I want my mom. I’m just not comfortable.”

On the other hand, her younger sister – whom the Funkhousers describe as having the communication level of a 3-year-old as well as severe physical problems – requires 24-hour care.

“I worry about my sister a lot,” Jessica said.

The Funkhousers are still considering the plans they need to put in place to care for their daughters in the future. They have concerns and questions – but as of yet, no answers.

“You take every day as it comes,” Patti said. “You deal with what comes, and you thank God they’re still here. And then you start over the next day.”