The struggle to find care for the disabled Caregivers: Advocates and agencies strive to help aging parents provide shelter and services for disabled children.

November 23, 1997|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

The Sun reported in March on the struggle of Bill Specht to care for his aging disabled child, Denny. The father and son have since received outside help.

In the little white house on the hill, the front door is wide open, and Bill Specht is waiting.

He listens for the cars driving by, for the one that will pull into his graveled driveway. It's been quiet here since his wife, Tilly, died. He knows just how long: 20 months and 24 days. Since then, Specht, who is 84, has gone blind. Their son, Denny, who is 43 and has Down syndrome, is aging, too. He has ached from arthritis and cried from depression.

For a long time, Bill Specht was battling on his own to watch over his son, mixing up their medicines, burning their meals, answering the painful daily questions about where Mom was.

But Bill Specht's private anguish has finally ended.

Most afternoons, as he rocks expectantly in his easy chair, a kindly woman with soft blue eyes bustles into the Taneytown house, carrying groceries or supplies, calling out, "Hi Bill!" She's a helper sent by the state six days a week to cook, clean and nurture Specht and his son. Soon, there will be laughter in the living room and scalloped potatoes cooking in the kitchen.

Nancy Klinder, 51, also works on a deeper level, trying to give Denny a social life and his father a break. Behaviors that exasperate the parent of a disabled child in the first 20 years become excruciating in the next 20. And many disabled people have mental illnesses or various medical conditions that make matters worse, experts say.

"When it comes to the end, you can't do it anymore, you can't do it," said Specht. "She's a godsend."

Nationwide, hundreds of thousands of parents in their 70s, 80s and even 90s are in similar circumstances. When their generation was young and strong, they turned their backs on institutions, took their disabled children home, and vowed to look after them forever. Now, the parents find themselves nearing death, agonizing over what might happen after they're gone. Most are getting no help.

They are on long waiting lists. In Maryland, according to state figures, there are 5,339 adults on a list that has grown by a thousand people in the last three years. About 40 percent of the caregivers are 60 or older.

Across the country, the families of disabled people and their advocates are organizing to push for more money and a greater say in how it's spent. In Maryland, about 600 families have started a campaign urging politicians to use some of the state's $250 million budget surplus to pay for their proposed $47.5 million initiative. Gov. Parris N. Glendening has promised help.

Some agencies are attempting to give the disabled more choices while making the money go farther. Maryland's Developmental Disabilities Administration (DDA) is trying to do this by revamping rules and fees, while families are exploring unusual partnerships.

Rather than shoehorning a disabled person into any group home slot that might become available, states are also starting to approve innovative, often cheaper alternatives like the Spechts'. has allowed father and son to stay together in their longtime Carroll County home, with their cat, Tommy, who sleeps on Denny's bed.

Warm meals again

For the past few years, Bill Specht assumed he and Denny would have to split up -- one to a nursing home, the other to a group home. But after waiting more than a year on the state's list, he feared his son wouldn't even be able to get one of those spots. Their story appeared in The Sun, and one day later, state officials approved the family for funding. A local provider, Change Inc., proposed sending a service provider into the Specht home for an annual price tag of $26,000. That compares with $40,000 to put Denny in a typical group home.

The setup is permanent. After Bill Specht dies, Denny will be able to stay in the house, with supportive services, for the rest of his life. A friend who is also disabled might become a roommate.

Klinder, who works for Change Inc., went to work in mid-June, immediately addressing problems small and big. She replaced faded doilies on the furniture, bought Denny winter pajamas, put reflector lights along the dark driveway, and began taking both men to doctors' appointments. She even asked Mr. Specht's daughters to bring back their late mother's cookie sheets.

It took some time for everyone to adjust to seeing someone else in Tilly Specht's kitchen or driving the family car. For Bill Specht, it meant finally acknowledging that he couldn't take care of his son anymore. His two daughters, who both work and have their own families, felt less pressure. Said one, Carolyn Abrecht, "You come in, you smell cooking. Dad seems to be in a good mood again."

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