Care givers for disabled wait for help

September 27, 1997


Staff Writer

The dishes are piling a bit in the sink and the trash needs to be taken out, but MaeEtta McAfee, who once detested seeing such household tasks lapse, has more important things on her mind.

Her husband, Wayne "Jack" McAfee, is calling for her from the next room - again. A stroke last year left 55-year-old Jack McAfee paralyzed on his left side, unable to walk and restricted most of the day to a bed watching television.

MaeEtta McAfee, who is 54 and had a hip replaced in May, provides him with the almost-constant attention he requires.

In a few hours, activity in the Main Avenue home will turn up a notch when the couple's 32-year-old son arrives from the cerebral palsy day program he attends. He too will need help with meals, taking medicine and other daily routines.


If MaeEtta McAfee is lucky, she will find enough time for a nap at about 3:30 p.m.

"If I doze for 20 minutes, I'm OK," she says.

Like many other parents of developmentally disabled adult children, MaeEtta McAfee is looking for help. If her son would be interested in being placed in a group home, that would take a lot of stress out of her life, she said.

But Adam McAfee is one of 160 Washington County residents waiting for some type of service funded by the Maryland Developmental Disabilities Administration. More than half of that group, 87, are receiving no services, the agency said.

"There are a lot of people out there that still need services," said Bob DeHaven, executive director of the Washington County Association for Retarded Citizens.

`Coming to a head'

A lack of services to meet the varied needs of developmentally disabled people is a historical headache for agencies like DeHaven's, which receive funds from the state agency and other sources to provide services like residential programs, in-home care and employment training.

But in recent years the issue has become more critical, as funds remain tight and the parents and others caring for the disabled are getting older, said Christine Marchand, executive director of The Arc of Maryland, formerly known as the Association for Retarded Citizens/Maryland.

"It's an ongoing problem, but it's coming to a head right now," Marchand said.

The budget for developmentally disabled funds in the four-county western region of the state has increased from $33 million to $46 million since 1992, said Karen Post, acting regional director of the Developmental Disabilities Administration.

She said there are currently 1,000 different services being provided by the state in Washington County, but that is not enough to handle the demand.

Post called said Washington County has a "reasonably high" waiting list in part because the county has many high-profile programs like the Potomac Center that serve developmentally disabled people.

By contrast, Frederick County, which is larger than Washington County, has a smaller waiting list of 129 people.

"Fewer people know about the services even exist or ask if they can even get on the list (in Frederick County)," Post said.

Getting off the waiting list is based in various factors, such as the person's eligibility for the service and the urgency of their need. Someone with a crisis, like the death of a care giver, receive higher priority.

Marchand said there are people in the state who have been on the waiting list for 10 years.

"The wait varies, but no one gets on the waiting list and immediately gets services unless something dire is happening to them," Marchand said.

Quick transition

The problem is that often forces the person needing the services to make a quick and harsh transition into the programs, rather than having the time to be acclimated to the new surroundings, she said.

That's what has MaeEtta McAfee concerned. Five years ago she and her husband were seriously injured in an automobile accident that left both of them hospitalized for weeks.

"I started thinking then, if we would have both had gotten killed, what would have happened to Adam," she said.

Now, with hers and her husband's health problems, she hopes her son can get help soon. She said it's important to ease her son into any group home program, while she and her husband are still alive, so Adam McAfee can decide for himself if he likes the experience.

But like so much in her life, that's beyond her control.

"It's up to the system," she said.

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