Fw: Dallas Morning News Article

[Guest guest]

Clay Boatright's family is interviewed at the end of this article.

There is a segment on the DMN website.

http://www.dallasnews.com/video/index.html?nvid=201647

Nagla

----- Original Message -----

Thousands of disabled Texans on waiting list for in-home care

07:05 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.

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. "