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The Dallas Morning News / Saturday, January 12, 2008

Families facing tough choice to place disabled relatives in

institutions

Some who've waited years to get disabled relatives care now see

shortcut in the state schools they've rejected

AUSTIN – The last thing 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.

Yeaman says her autistic son Lathom, 17, has been at his best

since moving into a South Austin Group home.

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community – and to closing institutions they say are outdated and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

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. "

A desperate measure

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,

Dooley put her son , 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, " 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 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 , 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 loves where he is. He considers that

his home. "

CARE IN TEXAS FOR THE DISABLED

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.

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.

http://www.dallasnews.com/sharedcontent/dws/news/texassouthwest/storie

s/011208dntexwaitlist.2c69bcb.html

By EMILY RAMSHAW / eramshaw@...