Help for disabled coming through Waiting list is thinned under state initiative to improve services

September 24, 1998|By Diana K. Sugg | Diana K. Sugg,Sun Staff Sun staff writer Laura Lippman contributed to this article.

One by one, parents got the phone call this summer and listened to the words they never thought they'd hear: Help is on the way.

Their children have mental retardation, cerebral palsy or autism. Nearly 6,000 developmentally disabled people have been on a waiting list for years, and under a new, five-year state initiative, they are finally getting services: a volunteer job; a safe, clean place to live; a person to take them to the movies.

Nicknamed the "dead and dying list" because parents often had to die before their disabled adult children got help, the roster was one of the longest in the country. But Gov. Parris N. Glendening's $68.4 million plan, labeled the Waiting List Initiative, has vaulted Maryland from among the worst of states, when ranked for fiscal effort for disabled services, to among the leaders.

"It's not just a government program," Glendening said yesterday at an event celebrating the effort to eliminate the waiting list, with several of the affected families in attendance. "This shows what we can do when we govern by compassion."

He then introduced those in the crowd whose lives had been changed in the past few months. But those families represented only a fraction of the 287 who have been helped since the money came through in July.

"He just loves his new home, he's just crazy about it," said James Cumberpatch, 76, a Kensington widower whose 35-year-old son, Joe, who has Down syndrome, had been on the list since 1983. He was often short-tempered and gloomy, watching television alone for hours every night. Now, in a townhouse with two other disabled men and a full-time caregiver, he plays checkers and goes to dinner and the movies. "He's so much happier. He tells people, 'I have my own house now, just like my brothers.' "

One of the priorities are elderly caregivers like Cumberpatch. About 40 percent of the parents on the list are 60 or older, including many ill parents in their 70s and 80s, whose disabled children outlived every expectation and are living at home.

Other families will get help in phases and, so far, the agency is ahead of schedule, according to Diane Coughlin, director of the Developmental Disabilities Administration.

The new state money enables Maryland to draw nearly $50 million in matching federal funds. This fiscal year, about 800 families with young children will get support services, 250 adults will be placed in apartments and homes, and 625 will get individual supports such as respite care.

In the first two years, everyone on the waiting list for day services -- about 1,400 people -- will be offered programs. Eventually, officials say, the everyone on the list should be helped.

Mary and Thomas Scherrer have seen real changes for their son, Geofrey. The 21-year-old Baltimore man is mentally retarded. He recently finished special education, and it was unclear what he would do with his time. With the new funds, he was given a job working on a landscaping crew for the Baltimore Association for Retarded Citizens.

"Now, I have money in my pocket every day," said Geofrey Scherrer, who has purchased sunglasses and a bike helmet. "If I didn't have this, I'd be hanging around the house watching TV all day."

The last few months have been a busy, sometimes confusing time, as social service workers scrambled to meet every family, and parents tried to find the best place for their disabled &L children. Everyone is working under new rules.

It used to be that after a disabled person died, a slot would open up in a group home. Whoever was next on the list would be moved in, often regardless of location, or whether the disabled person knew anyone in the house.

Now that old system has been turned on its head. Families work with social workers to decide what kind of services their disabled relatives need and choose the agency they think will do the best job. It means they pick the caregiver who will watch over their son or daughter and where they will live. They select the residential situation they want, from a shared apartment to a townhouse.

Parents are also now chipping in, covering rent and utilities, while the state sends in the staff. It's opening up all kinds of possibilities.

Still, there are tensions. Some families, bitter they had never received help when they were in a crisis, rejected offers now. And the head of one residential company says he has vacancies in larger facilities that aren't being filled.

Terry Perl, president of The Chimes, the largest provider of community-based residential alternatives in Maryland, believes the disabled aren't being offered those slots because DDA is pushing an agenda of smaller housing units.

"I'm concerned the initiative is not responsive to the needs of people in the community," said Perl.

One worker dealing with Baltimore families, Janet Furman, said she had offered slots in larger facilities to families, but they declined for reasons including location. Coughlin, DDA's director, said her agency is following what's considered best practice: putting disabled people in one- , two- , or three-person apartments and townhouses. Larger facilities are still being funded, but the new money is not being used for those spots. Meanwhile, other families are waiting, praying the money will last.

In Glen Burnie, Marion Peterson, 62, has a 37-year-old daughter with a rare disability. Gretchen can do some basics, but can't shop or cook, or ever live on her own. She's holding a job now at Burger King.

"I know there are people in their 80s who are really getting desperate," says Marion Peterson. "I'm all for them getting help first, but I don't want to wait until I'm 80."

Pub Date: 9/24/98

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