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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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