As Georgia caregivers grow older, they become less able to provide support

By GRACIE BONDS STAPLES

The Atlanta Journal-Constitution

Monday, October 13, 2008

For decades now, Marilyn Humphreys has lived two lives — her own and her daughter Jenny’s.

She makes Jenny’s breakfast. She feeds her breakfast. She brushes her teeth. If Jenny wants to wear earrings, she puts them in her daughter’s ears. She brushes her hair. And though it’s getting harder to do, sometimes she has to lift her — Jenny weighs 90 pounds — from the bath.

“Everything I do for myself, I do for her,” Humphreys said.

It has been this way since Jenny Humphreys, now 32 and physically and developmentally disabled, was an infant, and it’s not likely to change anytime soon.

In increasing numbers and ways, their story is playing out with disturbing regularity in communities all over the country.

At 62, Marilyn Humphreys, of Atlanta, is part of a generation of parents now facing old age and the prospect that their disabled children — grown now, but still needing constant care and support — will outlive them.

“It’s an odd thing to be concerned about,” said Pat Nobbie, deputy director of the Governor’s Council on Developmental Disabilities. “Most parents expect that their children are going to outlive them. It’s only those of us who have children with developmental disabilities who worry about it.”

According to David Braddock, a psychiatry professor and director of the State of States Developmental Disability Project at the University of Colorado, more than 716,000 adults with developmental disabilities were living with caregivers over the age of 60 in the United States in 2006, the last year for which figures are available.

In Georgia, an estimated 17,000 adults have developmental disabilities. Roughly 50 percent live in metro Atlanta.

As aging caregivers become more frail themselves, Braddock said, they are less capable to provide support to family members with disabilities.

In the three decades since Jenny Humphreys was born, the prospects for people like her have changed dramatically. Not only have laws been enacted to guarantee their rights to public education and timely state care, experts say that better health care has extended their lives far beyond what doctors once thought was possible.

Jenny became ill at 13 months. To this day, doctors have been unable to make a definitive diagnosis of what happened. They predicted the child would die before her second birthday.

“She stopped crawling, she stopped walking, and after a while, she couldn’t sit up,” her mother remembered. “She’d just lay in her crib. We took her home, and miracle of miracles, she moved her foot, then her hand. Two years later, she could hold her head up again.”

Marilyn Humphreys never dreamed her daughter would reach adulthood. Now that she has, she said, she worries what will become of her when she and her husband are gone.

“It’s scary,” she said.

For parents of children with Down syndrome, a chromosomal disorder, that fear is compounded.

“With the Down syndrome population, it’s almost like this double-edged sword,” said Janice Nodvin of Dunwoody. “They age more rapidly even though they live longer and healthier lives [than previously].”

Nodvin, 64, remembers being told her son Evan would probably die before reaching adulthood. Then, at his first well-baby check-up, the pediatrician encouraged her to treat Evan as she would any other child.

That doctor, Nodvin said, gave her the strength to forge on and do the best for her son.

At 29, Evan has far exceeded his mother’s expectations. He rides MARTA. He votes. He works at a senior adult day care center. He has lived on his own since 2001.

Even so, Nodvin said, transitioning her son into the community has been a tricky dance. Without a personal consultant who helps him cook his meals and gets him to the places he needs to be, they’d be standing still.

“Evan is a man, and he should always be treated as a man, even though we sometimes have to help him out,” said Nodvin, program director of the adult Down syndrome program at the Institute for the Study of Disadvantage and Disability, a nonprofit advocacy organization based in Atlanta.

Nodvin said that many families work so hard to get their children into schools and become self-reliant that they neglect to look at the big picture.

She said her institute encourages parents to put a plan in place while they are young enough and strong enough to have a say because, “We’re still our child’s best advocate.”

“I’ve worked with families where parents are really aging and the adult with the disability has never been outside the home,” Nodvin said. “When is that going to happen? When the person gets sick?”

Today, the expected life span of people with Down syndrome is close to 55 years — up from a median of about 35 years a few decades ago. The same is true for others with developmental disabilities, including cerebral palsy, autism and fetal alcohol syndrome.

Like the Humphreyses, Nodvin and her husband Joe, also 64, take comfort in the support they have tried to build around Evan.

If something were to happen to her or Joe, Evan’s supervision would be taken over by his older sisters. The parents have made financial arrangements that would kick in upon their death. They have taken into consideration Evan’s increased risk for developing Alzheimer’s disease, common among those with Down syndrome.

“We have talked a great deal about what our vision is for Evan,” Janice Nodvin said.

To prepare for the inevitable, Marilyn Humphreys and her husband Frank have set up a trust for Jenny and taken out as much life insurance as they can afford. They’ve also begun a search for a home for their daughter in the event her brother can’t care for her.

Jenny Humphreys needs constant care and an assistive device to talk.

“She can try to communicate, but if someone doesn’t take the time, it’s easy to shrug and say, ‘I don’t understand,’ and walk away,” Humphreys said.

This is what she suspects happened when the parents left Jenny in respite care recently. When they returned, she said, Jenny’s diaper had not been changed, she had not showered and no one bothered to help her brush her teeth.

“She was stuck in front of television the entire weekend,” Humphreys said her daughter told her.

And so even with the best-laid plans, parents worry.

“My biggest fear is not having everything in place,” Nodvin said, “that he won’t continue to grow and be happy and productive.”

In a lot of ways, the Humphreys and the Nodvins are lucky. They’ve taken steps to take care of their children after they are gone.

But Nobbie said that far more parents have not looked ahead. And even if they have, they will need help from a system caving under the strain of budget cuts.

“The latest information that I’m aware of is that 29 states have projected budget gaps for fiscal year 2009 and this includes Georgia,” Braddock said. “This is not the time to reduce these resource commitments to our most vulnerable citizens.”

He said that unless state legislatures plan now and do not restrict funding, this impending crisis will only become larger.

Braddock said adults with developmental disabilities should have priority on any waiting list for social services such as housing, personal assistants and employment. That’s because they are vulnerable to becoming homeless if an aging caretaker were to move into a nursing home or die.

The loss of a caretaker “will get you a move to the top of a waiting list, but it’s extremely stressful for families,” he said.

According to Nobbie, some 6,300 people are on the social services waiting list in Georgia. Nobbie said it can take three to six months, from intake to evaluation, to get services, but “we’ve got people who’ve been on a waiting list for years.”

“Elderly parents have cared for their children their whole lives without support,” she said. “When they need it, the state needs to be there to help them.”