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Wait is all many disabled can do

Thousands of Floridians await help from the state. One mother is desperate.

By MELANIE AVE
Published April 16, 2007

ADVERTISEMENT [Times photo: Lance Aram Rothstein] Leslie Bolen of Spring Hill has been trying to get Michael, 5, who is autistic, to feed her with his hands for several years. In a rare moment of connection, Michael gives her a piece of cereal.

When Michael Bolen gets upset he bangs his head on the nearest surface available - the tile floor, the counter, his mother.

A 5-inch-by-5-inch hole in the kitchen of his family's Spring Hill home is proof of the 5-year-old autistic boy's condition. So are two neck injuries his mom endured. And the now-repaired family-room window through which he once thrust his head.

Michael, who doesn't speak, is one of 14,528 disabled Floridians on a six-year waiting list for funds to help pay for therapy, job coaches, home nurses, even dental treatment. Their disabilities range from mental retardation and autism to spina bifida and cerebral palsy.

Another 6,095 are waiting for increased Medicaid assistance through a program called Home and Community-Based Waiver.

Among those waiting is Christopher Morris, a 9-year-old mentally retarded and mentally ill Largo boy whose grandmother gave up her pets last week to keep them safe after his return home. Reports about his case in the St. Petersburg Times spurred the state to provide him temporary crisis funding through June.

But as the waiting list for people like Christopher nears an all-time high, state lawmakers are debating whether to limit how much can be spent on 30,000 disabled people statewide.

Hardly mentioned is what it would take to care for people like Michael who are on the waiting list and get nothing.

His family has been waiting three years.

"I feel desperate," said Michael's mother, Leslie Bolen, 30, who also has a 4-year-old autistic daughter and a 13-year-old son. "I know how precious every month is that ticks away that he doesn't get the help.

"It's setting his pattern for life more and more."

Lawmakers are considering various plans to limit spending because of a $153-million deficit at the Agency for Persons With Disabilities.

Some lawmakers said they have no choice but to control spending because of the deficit and the escalating expenses for those receiving services.

In 2006 the cost of services increased 12 percent over 2005.

"We are basically balancing the budget on the backs of the people they serve," said state Rep. Loranne Ausley, D-Tallahassee. "It's not their fault that the agency was mismanaged."

One House proposal would cut two-thirds of services to some people and place a cap on what they receive annually at $14,000.

Last year, the average waiver was $30,589, but hundreds of severely disabled people receive more than $100,000 in services.

The cuts are painful, said state Sen. Nan Rich, D-Sunrise, vice chairwoman of the Health and Human Services Appropriations Committee.

"We want to make sure everybody who needs services gets them," she said. "We also want to make sure people are not getting more services than what their needs are."

Growing cost

Rich said one reason the waiting list is so long is the growing cost of services. If spending is capped, she said, the money could be stretched to reach more people.

Advocates for the disabled are alarmed.

"It basically takes us back to the old days of institutions," said Sue Buchholtz, chief executive officer of the Pinellas Association for Retarded Children, which operates group homes and provides other services to about 700 disabled people in the Tampa Bay area.

Families and advocates believe many disabled people will withdraw from the community because they'll no longer be able to afford the aides who help them live and work independently.

"We're going to put people in crisis," said Debra Dowds, executive director of the Florida Developmental Disabilities Council. "We recognize there needs to be some changes. The problem is the level they've done is way too severe."

Dowds also fears the cuts will pit families on the waiver and those on the wait list against each other. "We need to be funding people on the wait list," Dowds said, "but not at the expense of people currently receiving services."

The waiver program, which receives state and federal funding, was designed to keep the disabled out of costly institutions that isolate them from society.

But funding has always run short. So many wait.

The waiting list has been the subject of several federal suits.

When Jeb Bush became governor in 1999 he vowed to eliminate a decades-old waiting list of 10,000. But as the old list dissolved, a new one grew. By 2002, the new list had 6,000 names.

"We were catching up, but we were not keeping up," said the agency's regional director in Tampa, Carl Littlefield.

The Agency for Persons With Disabilities had a record waiting list in November 2004 of 15,500.

Even though lawmakers added $350-million since 2001, Rich said, it was not enough.

No new approvals

In January the state stopped approving new people for the waiver, though it continues to add names to the waiting list. Each month it approves funding for a few people in crisis, like Christopher Morris. But families worry about those who get nothing.

"No individual should sit at home watching TV all day," said Palm Harbor's Ann Millan, 67, whose daughter, Robin, 36, has autism. "That's what would happen."

Robin Millan, a Publix cashier, has received the Medicaid waiver since 2000. It helps pay for her language therapy and provides someone to help her pay bills, buy groceries and clean the condominium where she lives alone.

Annemarie Prater, 29, of Spring Hill wishes lawmakers could see the needs in person.

"If these people in Tallahassee would just have one hour in our life, they'd probably cry all the way home," Prater said.

Last month, she and her husband received crisis funding for their autistic son, Kevin, 9, after she nearly wrecked her car on U.S. 19 when he unbuckled himself.

He has been on the waiting list since 1999. And even though her son is getting crisis help, she said she still has to find people willing to work with her son: someone to help him with his behavior problems, someone to go with her during doctor's appointments, someone able to drive to her rural home and accept the waiver's low pay rates. "My goal for him is to be able to function a little bit," Prater said. "My son didn't ask to be this way.

"The way it's going, it's like they wait for your child to be totally out of control before they step in."

Times researchers Angie Drobnic-Holan and Caryn Baird contributed to this report. Melanie Ave can be reached at 727 893-8813 or mave@sptimes.com.

Medicaid waiver

Purpose: to keep the developmentally disabled out of institutions.Receiving the waiver: 25,293. Overall, 31,388 receive various waiver services.

Waiting: 14,528 people who receive no services and 6,095 who seek additional services.

Who: people with developmental disabilities including mental retardation, autism and cerebral palsy. About 70 percent of those waiting are mentally retarded.

Average wait length: six years.

Funding: state and federal.

Services: 33 categories including job coaches, therapists, in-home nurses, transportation, respite care.

Amount available: unlimited.

Average waiver last year: $30,589.

Source: Agency for Persons With Disabilities.

[Last modified April 15, 2007, 21:39:51]