Re: Thousands of Texans on waiting list for in-home care-Dallas Morning News Article

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st1\:*{behavior:url(#default#ieooui) } Thousands of Texans on

waiting list for in-home care State list often long for those trying to keep

mentally disabled family members at home

12:00 AM CST on Monday, December 17, 2007 By EMILY RAMSHAW / The Dallas

Morning News

eramshaw@...

GARLAND – Vicki Schilling promised her dying mother to care for her mentally

retarded sister the way the family always had – without putting her in an

institution. She moved from California to Garland, adding her sister Janis to

the state's waiting list for in-home care.

Photos by TOM FOX/DMN

Blaire Boatright, 10, (left) plays with Paige, 7, one of her autistic and

mentally retarded twin sisters who live at home without state help.

Nearly a decade later, with a child of her own, an elderly father and a

husband working as a defense contractor in the Middle East, Mrs. Schilling is

still waiting.

Her 44-year-old sister is out of control, throwing violent temper tantrums and

making daily threats to run away. Her 8-year-old son is traumatized by his

aunt's behavior and still shares a bedroom with his mother. Her 87-year-old

father must work to help pay the bills. And Mrs. Schilling, 38, is at her wits'

end, wracked with guilt and grief. She has started touring state institutions.

Janis is one of nearly 100,000 people with disabilities stuck in Texas queues

for home and independent living services, the court-mandated community

alternatives to state institutions for the mentally retarded.

While legislators have taken note, directing more dollars in recent sessions

to move people off of so-called interest lists and into home and community-based

care, their efforts have hardly kept up with population growth.

" We haven't done good enough, " said Sen. Judith Zaffirini, D-Laredo, a

champion for Texans with disabilities. " Simply to reduce the waiting lists is

insufficient – our goal must be to eliminate them. "

But advocates for the disabled say 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.

Some people in Mrs. Schilling's situation have become so desperate they've

taken another approach – admitting their relatives to one of the state's 11,000

institutional or group home beds simply so they can get them out again. By law,

people who are already institutionalized – either in a state school or one of

Texas' private or nonprofit facilities – are eligible for home or

community-based care immediately, rather than waiting out the interest list.

" I feel like I'm a failure because I'm watching my sister fall apart, " said

Mrs. Schilling, who spends her days on hold with state agencies, adult day

cares, nonprofits – even the U.S. Justice Department – while she juggles Janis'

insulin shots, psychotropic drugs and vicious outbursts.

What she needs, she said, is someone to shuttle Janis between activities, to

provide respite care and in-home nursing, to manage Janis' mental health and her

rounds upon rounds of medication. They are all services the state provides, but

not until her number comes up.

" My mom said to me, 'I know you'll do the right thing for Janis,' " Mrs.

Schilling said. " I'm doing the best I can, but we are going through a crisis

here. "

Institutions vs. homes

For decades, families unable to care for their disabled relatives had a single

option: put them in an institution. But over the last 30 years, the care

spectrum has widened to emphasize independent living and community-based care –

the result of litigation and disability rights campaigns.

Ten states and the District of Columbia no longer have institutions. Most

others have scaled them back dramatically. But a few remaining outposts, Texas

included, still rely heavily on institutions while trying to accommodate people

in the community, a budget challenge that almost always leads to a waiting list.

" It's akin to making a move from California to a new house in Texas and being

unable to sell your old house in California, " said Dr. Braddock, a

University of Colorado social scientist who has published reports on the

country's services for the disabled for 25 years. His 2006 report ranks Texas

50th in the country in terms of the proportion of money spent on community-based

services. Texas' wait for in-home care, though improving, is considered one of

the longest – primarily because so many people in the state need services.

" Unless you've got another source of funding, the cost of maintaining

institutions and expanding community programs at the same time is very high, "

said Dr. Braddock, a University of Texas grad who started his career at the

Austin State School.

State leaders argue the two aren't linked – the solution, they say, is simply

finding another funding source. And they say closing Texas' 13 state

institutions for the mentally retarded is politically unpalatable. Those

facilities, which generally don't have waiting lists for entry, are still the

best option for many Texans with profound disabilities, they say.

Over the last two sessions, Texas lawmakers funded nearly 1,700 new jobs at

state schools, as well as improvements and infrastructure repairs on those

campuses. But they also agreed to spend an extra $200 million to reduce the size

of the waiting list; this year alone, they pushed more than 10,000 people off

the list and into community services.

, spokesman for the Texas Department of Aging and Disability

Services, said this effort has brought the longest interest list down to three

years and five months.

But the agency's timeline is disputed by advocates for the disabled, who say

the wait is actually much longer. Because the interest lists are maintained by

the state's 40 local mental retardation authorities, they say, waiting times

could be eight months in one community and eight years in another.

" It's the norm to wait eight years, 10 years, up to 13 years for care, " said

Advocacy Inc. spokesman Jeff Garrison-Tate, whose own teenage daughter has been

on the interest list for six years.

Nor is the agency's purported three-year average anything to brag about, Ms.

Zaffirini said.

" I don't understand how people can sleep at night knowing thousands and

thousands of people are out there waiting for services, " she said.

For Carole and Clay Boatright, rest is a luxury they can't afford. Their

7-year-old autistic and mentally retarded twins, identical girls who have been

on the waiting list for in-home care for two years, require round-the-clock

supervision – and what Mrs. Boatright calls " octopus arms. "

Mia and Paige are in nonstop motion, flailing their limbs and hurling their

spindly bodies through the family's Plano home in a cacophony of shrieks and

moans. The girls don't speak. They're not potty-trained. They both have

seizures. Simply getting them from the minivan to the front door, or from the

front door to the kitchen, requires two people, multiple trips and an abundance

of patience.

Going it alone

So far, the Boatrights have done it alone. Their daughters belong with their

family, they say; a group home or institution is simply not an option. But

watching Mia and Paige creep up the waiting list – they gained just 40 spots in

two years – is disheartening. They've been told they could be on the list

another five years, Mrs. Boatright said. At that point, the girls – already

gaining on their parents in height and strength – will be in the throes of

adolescence.

" There's just so much we need, so much support that could help us out, " Mrs.

Boatright said. " I want my girls, my 7-year-olds, to stay home with me, and I

think the state should want them to stay with me. I don't just need that help

five years from now. I need it now. "

But it's not just the wait that can be maddening. People who have been on the

list call it a constant source of anxiety and a bureaucratic mess. Simply

changing an address or missing a phone call can bump someone to the bottom of

the queue.

" There are so many barriers for people who are low income, who don't have

e-mail, who don't speak English, " said Mr. Garrison-Tate, whose daughter was

inadvertently knocked off the list when the family moved into a new home. Even

with his experience as an advocate for the disabled, he said, he had to fight

for months – and even produce phone records – to reclaim his daughter's spot.

Ricky Broussard knows firsthand how painstaking this wait can be.

After three decades in institutional group homes and 12 long years on a

waiting list for independent living, the 39-year-old is preparing to celebrate

his first Christmas in his own home – a three-bedroom apartment in Houston.

Now Mr. Broussard's grandmother, who raised him until his cerebral palsy

became too difficult to manage alone, can visit him overnight. He's no longer

bound by group home menus – his in-home care provider made him bacon and French

toast on his first morning in the apartment. He can open the refrigerator and

get a beer when he wants one, and finally have some privacy with his girlfriend.

" It's what I've wanted my whole life – my own place, " said Mr. Broussard, who

advocates for self-determination before the Legislature and state agencies.

" It's been very frustrating, very emotional. And there are people who have been

on that list longer than I was. "

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Vicki Schilling (left) takes care of her mentally retarded sister Janis at home

without help.

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