Fwd: FCC: News Clip-Families fear losing safety net

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Family Care Council Communication:

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Bob Wessels

Employment Coordinator, Community Outreach, FCC Liaison

Agency for Persons with Disabilities

201 West Broward Blvd., Suite 305

Fort Lauderdale, FL 33301

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Email: _Wessels@...

www.apdcares.org

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The Agency supports Persons with Developmental Disabilities in Living,

Learning and Working in their Community.

----- Forwarded by Wessels/APD/DCF on 09/10/2008 08:47 AM -----

APD News/D20/DCF

Sent by:

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09/10/2008 08:42

AM Subject

News Clip-Families fear losing

safety net

ville families fear losing safety net Florida Times Union

Septembedr 10, 2008

MEDICAID CUTS: With a state budget crunch, less aid will be offered for

in-home care for disabled.

APPEALS PROCESS: Families can appeal, but the clock is running. Legal Aid

seeks lawyers to help.

By DEIRDRE CONNER, The Times-Union

(Embedded image moved to file: pic06868.jpg)

BOB SELF/The Times-Union

Talitha Stokes, 33, who has cerebral palsy, works with physical

therapist assistant Hawkins to stretch her arms and legs. Her

mother, Louvenia, checks on her bag of medicines at the ARC

ville, where Talitha receives support and care.

The state has mailed out the details of new cuts in aid to people with

developmental disabilities, touching off waves of alarm among their

advocates.

Assignments under the restructured Medicaid plan were sent last week,

bearing the news of service cuts for about 7,500 people, according to

projections from the state Agency for Persons with Disabilities. Unless

they appeal within 10 days of getting their assignment, the cuts will go

into effect on Oct. 15.

The intention is to save money, but critics have raised the specter that

the cuts could lead to more people being institutionalized, which could

cost taxpayers more in the long term.

For some, it's a matter of trimming a few thousand dollars worth of

services - forgoing one day of therapy or moving home to live with parents.

And then there are people like Talitha Stokes.

Stokes, 33, has cerebral palsy and she cannot speak or walk. She lives with

her mother with the help of the Medicaid waiver, which is intended to keep

the developmentally disabled out of institutions and integrated as much as

possible into the community. She is tube-fed and medically fragile, and her

cost plan provided about $41,000 annually for medical supplies, physical

therapy, transportation to and from a day program, and a personal care

assistant who helps her mother bathe and feed her.

That makes it possible for her mother, Louvenia Stokes, 65, to keep her

daughter living at home despite health problems of her own. The routine

ensures she gets the best care, the most hugs and kisses, the love and

support that keeps her in the best health possible, Stokes said. And,

critics of the new Medicaid program say, it's a bargain when you consider

the cost of nursing home care now tops $69,000 annually.

But the Agency for Persons with Disabilities wants to cut Stokes' care plan

by $26,000, which would eliminate the day program, respite care, physical

therapy - all but the supplies and personal care assistant.

Families try to cope

Most people have been willing to trim here and there, said McFarlin,

Talitha Stokes' support coordinator.

" The parents are very conscientious about taxpayer money and they make

accommodations. But there are some that can't do that, " she said.

The state believes families will find a way and has said it will give a

fair hearing to those who appeal. But drastic reductions in the waiver,

McFarlin said, could cost more in the long term if people can't get enough

help to live semi-independently and are forced to go into more expensive

long-term care facilities, paid for by the state.

The waiver is for people with developmental disabilities such as mental

retardation, autism, cerebral palsy, spina bifida, and Prader-Willi

syndrome. It covers more than 30,000 people statewide who would otherwise

qualify for institutional care under Medicaid and provides community-based

help such as transportation or physical therapy. Without the waiver, people

would either live at home with no support at all, or go into the

state-financed institutional care facilities.

Recently, though, the waiver program began running in the red. A $153

million deficit led Florida lawmakers to order the Agency for Persons with

Disabilities to restructure the program and reduce its budget, made up of

state tax revenue and federal matching grants.

The result is four tiers, with a cap on the amount that can be spent on

services. Advocates for the disabled say the tier system was rushed and

poorly executed, and some believe the changes are a short-term fix that

could eventually result in people with developmental disabilities being

needlessly institutionalized.

The cuts come at a time when Florida is facing a drastic revenue shortfall.

So it's unlikely that the Medicaid waiver will change any time soon.

Families now in fear

Especially for working or aging caregivers - mostly parents - who have kept

their adult children at home, the panic is palpable.

" Without me working, we won't be able to survive, " said Sheralla Newsome,

whose daughter, Nikia, is facing benefit cuts that would eliminate about

two-thirds of the services she now receives. If she loses her appeal, it

could force Sheralla to quit her job at Neptune Beach Elementary to stay

home with Nikia, who has cerebral palsy and requires constant care, which

she gets in a group day program at the ARC of ville.

" Do they want me to sit at home and collect welfare? " Sheralla Newsome

said. " There's no way I would institutionalize my baby. "

Hundreds of families have already contacted ville Area Legal Aid,

which is working with two other North Florida agencies to handle the

hundreds of appeals from people disputing their tier assignment or level of

assigned services. They have to act fast: People have only 10 days to file

an appeal without losing services.

The onslaught has been so great that Legal Aid is putting out a plea for

help from private attorneys, said Sullivan, an attorney there.

Their stories often sound much like that of the Wilkins family, facing

drastic cuts.

" It's having a life-altering effect on our family, " said Pat Wilkins, who

cares for her 38-year-old daughter, Trisha.

Wilkins doesn't know what she will do. With a bad back herself, and her

husband recovering from colon cancer surgery, the Wilkinses will have to

pull her from her day program and get the help from a personal care

assistant.

What bothers Pat Wilkins the most is this: She believes the developmentally

disabled are suffering the most during hard times for the state.

" They're people who can't fight back, who can't take up for themselves, "

she said. " It's a group of people ... who can't vote. "

deirdre.conner@...,

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