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Help coming for
developmentally
disabled residents

Settling a class-action suit,
the state will seek funds to
be spent as families choose

Family says it's 'about time'

By Helen Altonn
Star-Bulletin

More than 700 developmentally disabled residents on a state wait list for home and community services may finally get them in the next three years.

Families will also get to decide how they want to spend money allocated for their developmentally disabled family member.

Some have waited as many as 10 years for services, said Diana Tizard, executive secretary of the state Planning Council on Developmental Disabilities.

"One thing people have to understand: Being on a wait list for these kinds of services is not like being on a wait list for a library book. These are vital, life-sustaining services."

The state has proposed to meet the needs as part of a settlement of a class-action lawsuit.

Gary Smith, executive director of the Hawaii Disability Rights Center, said nearly all of those on the wait list are mentally retarded, which is one type of developmental disability. Many also have physical handicaps.

The Hawaii Disability Rights Center (formerly Protection and Advocacy Agency of Hawaii) filed the lawsuit against the state on behalf of the 700.

Forcing the plaintiffs to wait for services because of a lack of state funding violated Medicaid law, the Americans with Disabilities Act and their procedural rights, the agency alleged.

Laurence Lau, deputy state attorney general, said the state "will use its best efforts" to seek an estimated $8.75 million annually in state funding to clear the waiting list through June 30, 2003.

Matching federal funds would double the amount, making the annual cost about $17.5 million.

About 1,000 developmentally disabled people now receive services, he said.

The Legislature provided $11 million for this fiscal year and $15.2 million next fiscal year for the program. All state funds are federally matched.

The state also has agreed to develop a comprehensive plan with public participation by the end of next year "to move the wait list at a reasonable pace after June 30, 2003."

Virginia Pressler, Department of Health deputy director for health resources, said planning already is under way with "a push to take care of people in a community setting as much as possible."

Lau said a hearing will be held Aug. 14 to get U.S. District Court Chief Judge David Ezra's approval of the settlement. Notice has been sent to all plaintiffs so they can comment, Lau said.

"I think both sides are pleased that a lot more people will be served," he added.

Smith of the Hawaii Disability Rights Center said the intent of the lawsuit and the funding is to support families caring for developmentally disabled members at home. It is an attempt to correct the disparity between services provided for those in institutions and those cared for by families, he said.

"This is particularly critical for people who are very old and have children middle-aged who are mentally retarded," he said. "One of the big problems of this wait list is, both generations are getting older."

Tizard said a large number of those on the wait list are living at home "at a great toll to family members. Many parents had to quit jobs to support sons and daughters at home."

"In general, we're delighted that it's settled," she said. "It's unfortunate that it had to come to a lawsuit."

Smith said he is pleased because the state abandoned various strategies it proposed to shrink the wait list, such as changing the definition of mental retardation and the level of care.

Also significant, he said, is that families will have their own budget and decide how to spend the money.

"It is a real move away from small group homes where all decisions are made for residents," he said. "My hope is, people won't just be put in small group homes but will make decisions for independent living."

More information People with questions or concerns about entitlements under the "Makin et al. vs. State et al." lawsuit are invited to call the Hawaii Disability Rights Center, 949-2922.

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For family of lawsuit’s
namesake, it's ‘about
time’ services
were provided

By Helen Altonn
Star-Bulletin

Elizabeth Russell moved here from Florida in the fall of 1997 with a son and daughter, both with developmental disabilities, because she was told they would have no problem getting state services, said Gig Greenwood, another son and longtime island resident.

On one of her visits, he said, "We checked with all the authorities and visited facilities to see where they might be placed."

But after his mother moved here and went to see about getting his siblings in programs, she was told they would be on a waiting list with "700-something," he said.

"We said, 'You've got to be kidding.'"

They were also told the waiting list wasn't moving, "which meant in their lifetime they might not get services," said Greenwood, commercial photographer and artist.

"It was ridiculous, unconscionable."

His sister has Down syndrome and his brother has autism, he said. Both are in their mid-40s.

They were receiving services in Florida, but his mother had already sold her house and cut all her ties there when she learned nothing was available here, Greenwood said.

Faced with the possibility of no services for years, he and his mother became involved in a lawsuit against the state to remedy the situation.

The class-action lawsuit, Makin et al. vs. State et al., bears the name of his sister, Janet Makin. His brother, Robin, also is one of the 700 plaintiffs -- all waiting for services.

Greenwood said his mother is on a trip to New York with his brother and sister. When he called and told her a settlement had been reached to provide home- and community-based services to the 700 during the next three years, her reaction was, "About time."

Greenwood said his sister and brother were functional in a shelter workshop and activities in Florida. Here, they have nothing meaningful to do.

Yet, he said, "We're probably in a better situation than a lot of other families. We have an extended family. It allows us to trade off, to make sure everybody has some sort of life."

Greenwood said the state must develop physical facilities with programs and qualified people to run them. "It's going to take a while just to get physical parts and personnel."