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Article of Interest - Mental Health

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Bridges4Kids LogoHelp Backlog for Mentally Retarded in State May Ease
by Rob Johnson, The Tennessean, April 20, 2004
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Judge indicates he'll OK consent decree settling federal suit brought by activists.

After four years of federal litigation, the state of Tennessee and a group of advocacy attorneys are on the verge of a breakthrough that promises to shore up the state's struggling support network for the mentally retarded.

More than 3,000 families statewide have been on a years-long waiting list for home- and community-based state assistance. These are families, such as Crystal Bell's, who are skeptical about the state's intentions, but they are trying hard to be optimistic nevertheless.

The families can require a wide range of help for their mentally retarded children, anything from nutritional counseling, to vocational training, to home-care services that enable a qualified person to sit periodically with a family member so that the parents can simply get a few hours alone away from the house.

"It would be great if I could just get some respite care sometimes," said Crystal's mother, Belinda Bell. "I love my daughter, but sometimes it would be great if I could just get out of the house. You know?"

In 2000 Nashville attorneys Gary Housepian and Kent E. Krause filed suit in U.S. District Court on behalf of family members who said they were unable to gain access to services that they contended Tennessee was obligated to provide. U.S. District Judge Robert Echols combined portions of that class-action suit with a related claim filed by the advocacy group People First.

Since then, Housepian's organization, Tennessee Advocacy & Protection Inc., and People First, represented by Jack Derryberry, have been engaged in sometimes stormy negotiations with the state.

Last year Echols ordered a mediator to intervene in the case, and in October, Gov. Phil Bredesen chose that mediator, veteran state official Stephen Norris, to become deputy commissioner of the Division of Mental Retardation Services.

At a long-awaited fairness hearing last week, Echols noted the administration's desire to resolve the suit, and the judge indicated that he intended to approve the consent decree reached by both sides.

Already the state has begun implementing plans to expand the home- and community-based services, Deputy Attorney General Dianne Dycus told the court. The services enable people to get the help they need at home without having to send their mentally retarded children to institutions.

Already 6,500 families receive this type of assistance, but 3,200 remain on a waiting list. The judge, the state and the plaintiffs expect that by July that backlog will begin to diminish as Tennessee puts more resources into the system.

To Bell, the Williamson County mother of a mentally retarded 22-year-old woman, the help cannot come soon enough.

Crystal Bell has almost outgrown the school-based services available to special-needs children. She functions at the level of a 5-year-old and is a sweet, social person, but is nevertheless extremely demanding of her parents' time, her mother said.

She can dress herself, but she cannot tie her shoes. She cannot stay home alone; in fact, she would be incapable of dialing 911 in an emergency.

Long term the Bells are facing an uncertain future. Belinda Bell does not want her daughter to go into a large institution she believes a group home with qualified care would be ideal for Crystal but there are currently no options for her in Tennessee, the way there would be in many other states, she said.

She put Crystal on a waiting list for services almost five years ago, but not much has happened.

"The closest thing I've got to a case worker is whoever answers the phone and then says, 'I'm sorry, but we can't help you.' "

Tennessee, she said, "needs to get their rear in gear."

She says she hears hopeful signals that the situation is changing, but that it will take a lot of effort for the state to convince her that it is serious this time.

Norris, the state's deputy commissioner of the Division of Mental Retardation Services, concedes that after years of missing deadlines and failing to adhere to performance standards, the state must build some credibility credibility with the advocates, the federal government and the families themselves.

"I don't think we've been very credible," Norris said. "And they've been suspicious."

Echols has said he expects the plan to eliminate or substantially reduce the number of people on the state's waiting list for assistance.

For the upcoming fiscal year, $18 million two-thirds of which is federal money has been budgeted so that 600 more families will get home- and community-based services. The next year the plan is for the waiting list to be reduced by 900.

Throughout the next five years the plaintiffs and the state will meet monthly to monitor the state's progress; Echols has not appointed a third party to monitor the plan's implementation.

The proposed consent decree also requires a public-information plan and a rigorous effort to calculate how many people statewide actually require these types of assistance programs.

State officials say they are unable to plan long-term because they don't have any reliable data about this special-needs population that would indicate where the state's responsibilities lie.

"We're hopeful that we can make this work," Housepian said. "It's the right thing to do."

Norris agrees, saying that the so-called self-determination plan allowing families to specify the kind of assistance they require could well be the most efficient way of delivering services.

Each family will get up to $30,000 worth of assistance. Some will need that much help; others won't.

"When families have a role, they can find the services they need more easily," Norris said. "We hope we can make this work."

    

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