09:13 AM CST on Saturday, January 12, 2008
AUSTIN – The last thing Karen Yeaman wanted to do was institutionalize her autistic son. Her family had already spent six years inching up a state waiting list for in-home care, weathering Lathom's worsening meltdowns and nightmarish running away.
Then Mrs. Yeaman learned of a shortcut. And, six months after making the gut-wrenching decision to admit Lathom to the Austin State School, one of the state schools for the mentally retarded, the family was able to move him back out – into a cozy independent-living home with around-the-clock activities and supervision.
"It was a devastating choice for us, but it was really the only option we had," said Mrs. Yeaman, who feels no guilt – only relief – that the back-door approach worked for Lathom, now 17. "We had struggled so much to advocate for this child, for his life skills, to do everything we could to include him. We couldn't wait anymore."
It's a little-known strategy that's being used by the savviest and most desperate caregivers, those for whom a years-long wait for in-home care or independent living is simply untenable. By statute, people who are already institutionalized have the right to be transferred into community-based care at once, while those who live at home without services must wait in line.
Opponents of institutionalized care for the disabled say it's a technique they can't endorse even as a means to an end; for them, any time inside a large, clinical care facility is too long. But they say they understand the motivation. Despite increased funding by Texas lawmakers in recent sessions, nearly 100,000 disabled Texans are still on the state's "interest lists" for independent-living services – a wait that can span a decade. There is no wait to get into a state institution.
Advocates for independent living say the waiting list will continue to grow unless lawmakers commit to funding more services in the community – and to closing institutions they say are outdated and costly to maintain. They estimate that community-based care costs the state about $50,000 a year per patient, compared to about $100,000 a year in a state school.
"Do I blame these families? Absolutely not," said Jeff Garrison-Tate, spokesman for Advocacy Inc., which supports closing the state schools. "Yes, it's an automatic ticket out. But it's a really hard thing to recommend to someone."
In the last two fiscal years, 415 Texans with disabilities have moved out of institutions and into independent or community-based living, according to the Texas Department of Aging and Disability Services, which oversees both types of care. About half of these people left state schools, while the others left large private care facilities.
It's unclear how many of these people entered institutions simply to bypass interest lists – though it's probably not many. The state schools and nursing-home-style private care facilities house 11,000 Texans.
And agency officials refute the idea, perpetuated by advocates for the disabled, that the state schools aren't a safe place to be. Despite media attention last year on abuse and neglect inside Texas' institutions for the disabled – and a U.S. Justice Department report documenting civil rights violations at one facility – agency officials say the problems have been addressed. For many people with profound disabilities, they say, the structure of a state school is more effective than community-based services.
"This is about giving people choices on their living options," said Laura Albrecht, spokeswoman for the agency. "You want to make sure that the individual doesn't oppose the move, that community placement is appropriate, that the resources are available. There's a lot involved."
By the time Lathom was a teenager, the Yeamans, who live in Dripping Springs, had tried everything to keep him out of an institution.
They'd battled public school districts and shelled out tens of thousands of dollars for private assessments and special education. They'd divided the family between Dripping Springs and Houston to send Lathom to the state's best private schools. And they'd given up raising exotic ranch animals – the longtime family business – to monitor Lathom's increasingly violent tantrums, anxiety attacks and attempts to run away.
In 2005, after five years on the waiting list for in-home or community-based services, Lathom still had 650 people ahead of him.
"There was no quality of life for anyone," Mrs. Yeaman said. "As a parent, you start to think, 'Do we lock him in his room and not let him go anyplace? Do we turn him over to Child Protective Services and lose custody of this child?' "
Then Mrs. Yeaman got a quiet tip: If she put Lathom in a state school, she could get him an automatic slot back in the community within six months. And they wouldn't be cutting in line – the state has special slots reserved to move people from institutions into the community.
The family was sick over the decision. Lathom's older sister sobbed, and his father's stomach was in knots. During his mother's twice-weekly visits to the Austin State School, Lathom begged to come home.
But after six months in the facility – and sit-down meetings between state school employees, family members, the local mental retardation authority and community care providers, Lathom was discharged.
Today, he's the best he's ever been, his mother says, living with 24-hour supervision in a South Austin house he shares with one other person with disabilities.
"Of course, we always wanted him to be able to come back to us, at H-O-M-E," Mrs. Yeaman spelled , planting her feet as Lathom careered toward her for a kiss – model airplane in one hand, stuffed cat in the other. "If he'd gotten this kind of care when he first needed it, we might've had a better shot."
Lawmakers say they're working on it. Over the last two sessions, they've agreed to spend an additional $200 million to reduce the size of the waiting list. In 2007 alone, they moved more than 10,000 people off of the list and into community-based care.
State officials with DADS say the longest interest list now has an average wait of three years and five months – though the length varies significantly depending on where a person lives. Advocates say they frequently see waits of up to a decade or longer, a timeline that has made these quick state school turnarounds all the more popular.
Under the Americans With Disabilities Act, people with disabilities have the right to live in the most independent, least restrictive setting possible. The courts have interpreted this to mean that people who want out of institutions must be moved into the community.
But the strategy isn't foolproof.
After seven years on the waiting list for in-home care, Michelle Dooley put her son Morgan, then 16 and suffering from mental retardation and a seizure disorder, into a state school. In a fit of rage, he'd tried to kill her in their Fort Worth home – and at 6 feet and more than 200 pounds, he nearly succeeded.
Ms. Dooley had read the laws, and knew her rights. After three miserable months in a state school where, she said, "Morgan did nothing but lay in bed," she got him moved into a community group home, the placement she'd been waiting on for years.
The group home was a disaster. Ms. Dooley said she would show up and find Morgan sitting in his feces. The cupboards were bare and the residents unbathed. The house reeked.
Ms. Dooley found a better group home – a Denton behavioral facility where Morgan, now 22, has lived happily for the last four years. But their first independent-living experience was a wake-up call, she said. Just getting off the waiting didn't spell the end of their troubles.
"It worked for us – eventually," she said. "My plan was always to keep him in our home. But Morgan loves where he is. He considers that his home."
100,000: People on state waiting lists for community-based or in-home care.
11,000: Those with disabilities living in state schools or large private care facilities.
415*: Patients who moved out of state schools and large private care facilities and into community-based care since 2006
$50,000: The estimated per-patient cost for community-based care, roughly half the cost per patient in a state school.
*It's unclear how many of these people entered state schools simply to get back out, but it's probably not many.
Emily Ramshaw
Previously in The Dallas Morning News:
Dec. 17, 2007: While Texas legislators have directed more dollars in recent sessions to move people off of waiting lists and into home and community-based care, their efforts have hardly kept up with population growth. Advocates for the disabled say that as long as lawmakers continue to pour hundreds of millions of dollars a year into state institutions, several of which have endured high-profile cases of abuse and neglect, they'll be unable to afford in-home care for tens of thousands of struggling families.
July 25: A Dallas Morning News investigation into employee disciplinary records has found hundreds of cases of abuse at the hands of those charged with caring for the mentally retarded – everything from extreme physical violence to flagrant neglect. But district attorneys say few of those cases are severe enough – or clear-cut enough – to prosecute.
Nov. 2: Neglect and abuse are not problems confined to Texas' state schools for the mentally retarded. An investigation shows that the smaller group homes – often believed to be safer by virtue of their size – suffer from similar problems.
Dec. 21: Texas House Democrats say they can't wait for the Republican leadership to name a committee to study abuse and neglect in the state's facilities for the mentally retarded. So they've convened a legislative study group of their own.
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