Glendening asks funds to take care of disabled $68.4 million to end waiting lists for help

January 16, 1998|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

They packed the room yesterday, some trembling, others taking deep breaths to stop from crying. After a generation of fighting for services for their disabled children, parents listened to the words they'd wanted to hear for so long. They almost didn't believe that help was on the way.

Gov. Parris N. Glendening told them he is proposing a $68.4 million initiative over the next five years to help the developmentally disabled. Rehabilitation services, job training and funds for emergency cases all would be strengthened. But the centerpiece is a vow to eliminate the waiting list of about 5,300 disabled people, many of whom live with aging parents who can barely take care of them.

"We're the only parents who aren't allowed to die," said Lorraine Sheehan, 60, who has been testifying before the General Assembly since 1978. Her son, John, 32, is mentally retarded and autistic. "Now I'll be able to help develop whatever supports he needs before it's an emergency, and I'm dead or dying," she said in wonderment. "It's a tremendous comfort. Finally, it's our turn."

If lawmakers approve the plan, Maryland would vault from among the worst of states, when ranked by fiscal effort for disabled services, to among the leaders.

Over the next five years, the state dollars would draw millions in matching federal funds, for a total of $117.9 million. This would boost the budget of the state's Developmental Disabilities Administration (DDA) by 31 percent.

It was a hard-won victory. Families, advocates and government staffers have pleaded the case of the developmentally disabled for years, but as one legislator said, they were never a priority. Last year, The Sun published two front-page articles on aging parents struggling to cope. In a grass-roots effort, Joyce Lipman, president of the ARC of Maryland, rallied discouraged parents to try one more time. Hundreds attended town meetings and wrote politicians about their sons and daughters.

"Telling human stories touches people. People in the Glendening administration were human beings who responded to human beings," said Lipman. "Our stories made a difference."

The governor said they convinced him that he had to act.

"I have been deeply touched," said Glendening, who told the audience he has a brother in Florida who has a serious learning disability. He was institutionalized at one point, but is now living and working in the community, thanks to programs like the ones Glendening proposes to fund. "I feel like I'm able to repay a debt.

"This is the right thing to do," he added, noting that Maryland is the third wealthiest state in the country. "What type of a society do we want to be? We ought to be known as a compassionate and inclusive society."

During the news conference, the emotional crowd of more than 80 people repeatedly interrupted Glendening with applause, and later a standing ovation, as he ticked off what the initiative means in human terms. This year, 2,177 people on the waiting list would get placed in homes or day programs. Personal care attendants, who help with grooming, eating and other needs, would see their pay doubled to $50 a day.

The fund for emergency cases, which repeatedly runs out, would be increased so that disabled adults no longer are stranded without assistance, sometimes landing in homeless shelters. More money would go to a program that trains recent graduates of special education programs and puts them in jobs. Both would become permanent parts of the agency's budget.

"This is a major step forward. It's a tremendous commitment," said Beatrice Rodgers, director of the Governor's Office for Individuals with Disabilities.

Taking care of disabled adults has challenged Maryland, and states across the county, as vast but often unseen forces intersect. People with developmental disabilities are living decades longer. Institutions are closing, but the money for group homes has been limited. Baby boomers, including a bulge of disabled people, are approaching 50, and correspondingly, their parents are in their 70s, 80s and 90s.

Of the people on Maryland's waiting list, about 40 percent of the caregivers are 60 or older. Nationwide, there are about 87,000 people on waiting lists for residential care, according to the Institute on Disability and Human Development at the University of Illinois at Chicago.

Their parents have endured, growing older as they watched the waiting lists grow longer. Maryland families nicknamed the waiting list "the dead and dying list." The constant in their lives was the fear of what would happen to their children if they became ill or passed away. Every time Sheehan stepped onto an airplane, for example, she imagined crashing, and fretted about what might become of her son. When she was diagnosed with breast cancer in 1982, her first thoughts were not about herself, but about John.

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