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State gave her a home - and then
locked her out September
20, 2007
By Bob Braun
A young woman named Kara Anderson
suffers from autism, mental retardation, an inability to speak and a
seizure disorder that wracks her body and makes her weak.
She also suffers from a
bureaucratic runaround.
"It's beyond me how the state can
treat a child like this," says Kara's mother, Susan Anderson. She
lives in Hillsborough.
Kara, 18, was granted admission to
the Hunterdon Developmental Center in Clinton more than a month ago
-- but then the state immediately made it impossible for her to go
there.
To Susan and Paul, Kara's father,
the placement at Hunterdon was, while not perfect, the best
available.
"She needed someplace," says Susan.
Kara was attending Bancroft NeuroHealth, a private residential
school in Haddonfield, but officials there said she had to leave
because of the "complexity" of her medical conditions. And because
Kara had "no peer group" -- no other child with the same problems.
"Of course, they knew that from the
beginning," says Susan.
So the Andersons found the
Hunterdon center, a public facility. It would take her. But there
was a catch, announced only after the young woman was admitted. The
placement was made contingent on taking Kara off a medication,
Frisium, that the Andersons say controlled her seizures for the
first time in her life.
Frisium, a Canadian drug, is not
approved by the U.S. Food and Drug Administration. The Epilepsy
Foundation of America lists it as a treatment for seizures, but
notes its lack of approval in this country.
"I can't take her off Frisium,"
says Susan. "What mother would do that? What mother would take a
child off what amounts to a lifesaving drug?"
Susan calls it lifesaving because
it is the only medication that reduces the frequency of Kara's
seizures. She had so many, often dozens a day, that she had to wear
a brace with handles so school employees could walk with her,
holding her, to keep Kara from falling when she had an episode.
"She can do serious damage to
herself because she drops straight down to the floor when she has a
seizure," says Susan.
Kara's doctor prescribes Frisium.
It can be purchased from pharmacies in Canada and other countries
that approve its use. Nurses at Bancroft give it to Kara.
The Andersons' dealings with the
state and other agencies have angered and frustrated them. Finding
Bancroft was difficult enough. Then that school decided it could not
deal with Kara's medical problems after the child contracted
pneumonia. Her mother thinks the brace the school used was too tight
and affected her lung function.
"These agencies are always thinking
of their exposure to liability," says Susan Anderson.
Bancroft's officials have
repeatedly set deadlines for Kara's removal, but the Andersons had a
difficult time finding another placement.
Then came the chance to place Kara
at Hunterdon. Just weeks after the center said it would admit the
young woman, a state official sent the Andersons a letter saying she
could come only if she stopped taking Frisium.
On July 11, a Bancroft vice
president wrote to Jennifer Velez, the state human services
commissioner, pleading with her to let Kara go to Hunterdon and
continue using Frisium. So far, there has been no answer.
"You'd think we would at least get
the courtesy of a reply," says Susan.
Pam Ronan, a spokeswoman for Velez,
says the department is looking for another placement for Kara.
That's what's taking up the time.
"We have to be very concerned about
administering a drug that the FDA has not approved," says Ronan.
"Our staff needs to follow the law." Among other consequences, Ronan
says, the state could lose federal funding if it violated FDA
procedures. She says Kara cannot go to Hunterdon and have the drug.
Private facilities, like Bancroft, don't face such restrictions, she
says.
"How can they ask us to do that?"
wonders Susan Anderson.
Susan sits in Kara's room and talks
about her daughter. Talks about how, in many ways, Kara never got
beyond babyhood. Never spoke. She often hurt herself out of the
frustration of the life she leads. Scratched herself until she bled.
Says Kara's mother, "She needs help
far beyond what we can provide at home."
This room is still a little girl's
room. Frilly curtains and filled with stuffed animals and old
drawings from young friends. But Kara doesn't live in this room
anymore.
She doesn't really live anywhere
anymore.
Following is a response to this
article:
Although, I fully empathize with
the challenges faced by the Anderson family in seeking out a home
and appropriate services and supports for Kara, My Community Care
Team does not view Hunterdon Developmental Center as a home.
Hunterson does provide housing for people with disabilities in a
segregated institutional setting. I am not certain Hunterdon
Developmental Center is what most individuals or families would
identify as a home.
Hunterdon may not even provide a
secure and safe environment for Kara and others. Our experience
during only a 24 hour period at Hunterdon confirmed our worst fears
about out of home and institutional placements.
My daughter and I were at Hunterdon
only 24 hours. During the 24 hours, my daughter was placed at risk
of injury during transfer from bed to wheelchair and from wheelchair
to bath. The staff failed to secure the bed and the wheelchair
during transfers. My daughter would have been injured, if I had not
stopped either the bed or wheelchair from rolling away. Further, my
daughter can't drink thin liquids. This fact was outlined in my
daughter's medical records. During each of the three meals she was
served at Hunterdon, she was offered un-thickened liquids. The
offering of un-thickened liquids occurred despite my pointing out to
staff the risks of aspiration to my daughter, at each meal.
My daughter's placement was part of
an advocacy protest to highlight the absurdity of our state's
willingness to pay north of $165,000 per person to institutionalize
an individual against their wishes or best interests. Few, if any,
supports are available to the over 20,000 individuals registered
with DDD, living at home with families.
The questions advocates have
repeatedly asked is, if given a choice to purchase services with the
dollars currently being spent on institutional placements would the
individuals and families, choose an institutional out of home
placement?
Some parents will argue the
challenges faced by their loved one can't be met in the community.
The argument is false. The facts reveal several states have
successfully closed all developmental centers.
Perhaps, Kara Anderson requires
supports which may cost more than the current per person costs of a
developmental Center or Private Institutional placement. If that is
the case, Kara and the family should qualify to receive the
necessary funds to live an independent and secure life in the
community. In most cases individuals in the DC's can be transitioned
safely to community options at an average per person savings of 25%
or greater.
As an advocate for family, home and
community inclusion, I am disappointed to learn the front door to
admissions to the Developmental Centers is still open wide. I am
also concerned by the depiction of a segregated institution, which
by its very nature restricts individual liberties and basic
freedoms, referred to as a home.
Kind Regards, Frank
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