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Couple seek answers in autistic
son's treatment January
28, 2007
By Michele Morgan Bolton
Parents sue for data they believe
will reveal abuse
 NISKAYUNA
-- As Jonathan Carey presses his face into a horse's tangled mane,
he inhales the warm scent of leather and steamy animal breath
sweetened by oats. The chestnut mare nuzzles the 13-year-old's
cheek, and he is like any other boy.
His parents wonder: Does he
remember what happened? There is no way to know.
Mike and Lisa Carey say they have
worked since October 2004 to discover who may have hurt their
autistic and mentally retarded child while he was a resident of the
Anderson School in Dutchess County. The boy is nonverbal and can't
tell them himself.
The Glenmont couple want to expose
what they call a cover-up of abuse that hinges on 400 pages of
documents that the state Office of Mental Retardation and
Developmental Disabilities has refused to disclose.
The Careys sued Anderson School in
2005 in state Supreme Court in Albany, claiming the institution and
its staff violated Jonathan's right to safety and nourishment. And
now that a new administration is in place, they seek legislation
that will force state agencies to disclose information they said
could prove the abuse.
Their efforts also come as parents
of autistic children confronted lawmakers at the Capitol on Tuesday,
demanding changes in insurance law that currently limits and denies
treatment options.
For Jonathan, treatment has meant
living at the O.D. Heck Developmental Center in Niskayuna since he
was removed from Anderson.
He was removed after Mike Carey
made an unannounced Oct. 10, 2004, visit to the school for autistic
children in Staatsburg. Carey says he found his son naked, bruised
and lying in a bed soaked with his own urine. The boy had been
isolated and denied regular meals for weeks as a behavior
modification therapy for his compulsion to remove his clothes, his
father said.
"No parent or guardian should ever
have to go through what Lisa and I have had to endure just to get
answers," Mike said. "We would have been arrested if what happened
to Jonathan had happened at home."
The Careys' case also comes at a
time when the state Board of Regents has banned controversial
behavior modification techniques, called aversives, after an
inspection found a Canton, Mass., school that takes New York
students had compromised "privacy and dignity" by using the tactics.
A one-page summary of the
investigation into Anderson by the state Office of Mental
Retardation and Developmental Disabilities found school
administrators had been cited for one incident of withholding food.
The family's Freedom of Information
Law request for the entire case file has been denied under
confidentiality clauses in state mental health law and the federal
Health Insurance Portability and Accountability Act, or HIPAA.
Anderson's attorney, Michael
Murphy, said school officials continue to deny the Careys'
allegations but can't comment further because of confidentiality
laws and litigation.
OMRDD spokeswoman Deborah Sturm
Rausch said that although the agency is sensitive to the concerns of
parents, it must abide by confidentiality laws that preclude the
release of certain documents.
"Denying the records does not help
protect the most vulnerable," Mike Carey said. "In fact, it's just
the opposite."
The couple met with officials from
the OMRDD commissioner to the state inspector general, who has
authority to investigate potential corruption in state agencies but
has refused six requests to look in to the Careys' claims, they
said. Lisa Carey said she is determined to be a voice for her son
and other kids who can't speak for themselves.
"How can existing laws be upheld,"
she asks, "if state agencies can find statutes allowing them to deny
access to evidence they find during their investigations?"
Not only did no one prevent what
happened; no one reported it, Mike Carey said. Yet the state
agencies that regulate Anderson and other private institutions have
closed and sealed the case. The Dutchess County district attorney's
office has closed its own investigation.
The Careys believe Jonathan's basic
constitutional right to be safe and fed was violated after he became
aggressive when Anderson strayed from his special diet. He now
suffers from post-traumatic stress disorder, his parents say, and
the experience at Anderson caused him to lose ground
developmentally, they allege.
His father said Jonathan is making
some progress at O.D. Heck. Jonathan is most happy when he's at the
Pearse Road stable, about a mile away from his new home, where he
often has the chance to ride.
One recent day there, a sharp wind
whips a curtain of cottony snowflakes sideways. Jonathan and his
younger brother, Joshua, 9, shiver in the cold.
But Jonathan had waited as long as
he is able to go back to O.D. Heck. He swings his arms wildly,
pushing and grabbing.
"I know, I know," his mother coos.
"Are you ready to go back?"
Jonathan makes noises and wriggles
happily as he is strapped into his seat in the family van. Soon, the
Careys drive off toward Consaul Road and their son's institutional
home.
He looks over his shoulder out the
back window.
And he smiles.
Michele Morgan Bolton can be
reached at 434-2403 or by e-mail at mbolton@timesunion.com.
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