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C-PALSY  August 2005

C-PALSY August 2005

Subject:

Community Based Care (was: Re: FW: [Fwd: Re: I'm Back])

From:

[log in to unmask]

Reply-To:

St. John's University Cerebral Palsy List

Date:

Tue, 2 Aug 2005 17:34:44 EDT

Content-Type:

text/plain

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Parts/Attachments

text/plain (159 lines)

In a message dated 8/2/2005 3:55:06 PM Central Daylight Time,
[log in to unmask] writes:
> A lot of the people receiving community based services are covered under
> Medicaid Home and Community Based Waiver Services, because in addition
> to being a better way for people to live (healthier, more independent),
> it's less expensive.  In Wyoming, the cost to house people in our one
> remaining institution for people with disabilities is about 3X as much
> as serving people in the community.
>

Kendall,
The same applies in Texas.  Unfortunately, Texas is not catching on to the
logic.
I thought you and others might be interested in the following article (note:
same wait list applies for those with other developmental disabilities).
wanda

July 31, 2005, 12:07PM
Families sue to keep mentally disabled close by

Relatives claim community-based assistance in Texas too slow in coming

By MELANIE MARKLEY
Copyright 2005 Houston Chronicle

Texas families struggling to keep their mentally disabled loved ones out of
institutions have been waiting as long as 11 years for government assistance to
care for them at home or in some other residential setting.
Although eligible people with mental retardation have a right to
institutional care, as many as 28,000 families who opt to keep them closer to home face an
indefinite wait for services. And that's despite statistics showing that
caring for the mentally impaired at home costs the state about half as much as in
state schools.
"The mentality blows my mind," said Jamie Travis, who cares for her disabled
25-year-old daughter in her West Columbia home. "If I keep my child at home,
you will not give me a cent. But you will spend $110,000 if I give her up and
put her in a state school."
This year's state Legislature did allocate an additional $97.9 million to the
Department of Aging and Disability Services to help reduce that wait list and
others. But in the next biennium, only about 10 percent of the 28,000 will
receive services.
"Somehow, the political process is failing people with developmental
disabilities and their families in Texas," said David Braddock, a former Texan who is
a professor of psychiatry at the University of Colorado School of Medicine.
Institutional caseloads are on the decline in Texas, but the state still
relies more on institutions than the average state, said Braddock, who is with the
university's Coleman Institute for Cognitive Disabilities.
And in 2002, Braddock's analysis shows, Texas ranked 48th among all states in
per capita spending for home and community-based services for people with
mental retardation.
Other states sued


Frustrated that state policymakers weren't going to fix the problem anytime
soon, attorneys with the Arc of Texas and Advocacy Inc. filed a lawsuit in 2002
on behalf of 20 named plaintiffs, including Travis' daughter, Christy
McCarthy.
McCarthy has been on the wait list for more than eight years.
"In Texas," Travis said, "we just don't care about people unless they are
healthy voters, I guess."
Texas, though, isn't the only state being sued. As of March, lawsuits had
been filed in 25 states seeking more community-based services for people with
developmental disabilities, according to a report by the Human Services Research
Institute.
The Texas lawsuit accuses the state of discriminating against 40,000 people
with mental retardation and other developmental disabilities such as autism who
have been on wait lists for years to get Medicaid-funded services.
Travis said her daughter suffered brain damage after getting the pertussis,
or whooping cough, vaccine when she was 6 months old.
Travis now cares for her full time with the help of a companion caregiver
close to her daughter's age. Travis said she pays McCarthy's companion out of her
pocket because she wants her daughter to get out, go to the mall and try to
lead as normal a life as possible.
Top of the list


"Just like any other parents, we want our kids to be where they are happy and
to be where they are fulfilled," Travis said.
When McCarthy reaches the top of the wait list, she'll qualify for an array
of community-based services that are tailored for her specific needs.
People with mental retardation, for example, can receive home health care,
therapy, companion care, day care, even a supervised living arrangement or
respite for family caregivers.
According to the Texas Department of Aging and Disability Services, the
average cost for a person receiving Home and Community-based Waiver Services runs
about $3,186 a month.
By comparison, the cost of a person living in an intermediate care facility
averages $4,227 a month. Care in a state school runs taxpayers an average of
$6,453 a month, or $77,436 a year, according to the agency. But advocacy groups
say the cost is actually higher than $100,000 a year when all the expenses are
added.
Officials with the Texas agency that oversees mental retardation declined to
comment on the suit, saying they don't discuss pending litigation.
Largest allocation


But they described the list of 28,000 as more of an interest list than a wait
list because the people who have signed up have not yet been screened for
eligibility. Of the 26,698 who were on the list when the Legislature met, the
state speculated at the time that about 24,000 were actually eligible.
DADS spokesman Don Rogers said that about half the people on the list do
receive some other form of government assistance. And though about 1 percent on
the list have been there more than 10 years, he said, the average wait is closer
to four years.
Rogers said this year's legislative allocation was the largest ever for
expanding home and community-based services. In the past decade, he said, the
number of Texans getting the services has grown from about 1,300 to more than
9,000.
"Texas is making progress," said Rogers in a written statement. "The
Legislature has taken a definite interest in addressing consumers' needs."
State Sen. Judith Zaffarini, who has been an advocate for the disabled, said
she had hoped the Legislature would raise the level of funding even higher
during this year's regular session. For such Medicaid programs, the higher the
state funding, the greater the match in federal dollars.
Forced to institutionalize


But lawmakers, faced with competitive demands for limited resources, settled
on a more long-term plan that's designed to eliminate the numerous waiting
lists for disabled residents in a 20-year period. Long wait lists also exist for
medically dependent children, people with physical disabilities and people
seeking community mental health services.
"While I'm happy we achieved higher funding, I am not happy that we have
waiting lists that are as long as they are," said Zaffarini, D-Laredo, "and I am
most chagrined that, in effect, it's a 20-year plan."
Some advocates say too many Texas families are still being forced to
institutionalize their loved ones because they feel they have no other option.
"I think for the vast majority of families in the state, the cost and the
capacity to continue to care for a severely disabled son or daughter can simply
exhaust family resources," said Mike Bright, executive director of the Arc of
Texas. "Families do reach a point where external support is absolutely needed,
and it is a tragedy that this state has not recognized and responded to the
needs of families."
Darla Deese, who has mental retardation, moved off the wait list four years
ago. Now Deese, 46, gets slightly more than $1,500 a month to cover expenses so
she can live with her sister in Houston and attend a day program.
Her sister, Esther Hobbs, took Deese out of the state school 11 years ago.
Deese was on the wait list for seven years to get services. Hobbs said she
managed, though, juggling her public relations business and rearranging her life to
care for her sister until more assistance was available.
Hobbs has since opened Darla's School for Mentally Retarded Adults, a private
nonprofit school on Gray that provides an educational day program for four
students, including Deese.
"When I first brought her home, it was horrendous," Hobbs said. "It was a big
financial strain."
Jo Ann Murray understands the strain. She's been waiting since August 1998 to
get help so she can continue caring for her 22-year-old daughter with
moderate Down syndrome at home. Alexa, she said, can never be left alone.
Murray, a single mom who works as a teacher's aide at a Cypress-Fairbanks
elementary school, pays $500 to $700 a month to send her daughter to a day
program nearby.
It's a struggle, particularly after her husband died of cancer three years
ago.
But Murray said her daughter wouldn't be happy anywhere else.
"All I need is a little help," Murray said. "When my husband was alive and
working, I never thought this would happen. I never thought I would be at this
point."
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