A detailed article in the December 23rd New York Times reveals that powerful psychotropic medications have been “dispensed sloppily, without rigorous or regular review, by general practitioners with little expertise in the area” to developmentally disabled individuals in state institutions. In addition, the New York Times‘s review of previously unreleased records along with interviews with family members of people living in those facilities, state employees and doctors also found that “low-level workers at state group homes are frequently given discretion to increase the medication ‘as needed,’ despite their lack of significant training.”
My own teenage son Charlie has been taking a number of medications for some years due to his neurological challenges (Charlie does not have seizures, but one of his medications is also used for epilepsy) and his anxiety. To some extent, the carefully formulated combination of medications Charlie takes has helped him to remain living at home with us, rather than in an institution.†It goes without saying that giving powerful antipsychotic and other medications — which can have significant side effects — to a child with a disability, and to a child who has minimal communication abilities, is a daunting challenge for a parent. My husband and I monitor Charlie closely to discern his reactions to medications; even small changes in dosage can affect him significantly. We take him for routine visits to his pediatric neurologist and call his office with questions large and small.
Ayn Van Dyke Hasn’t Been Home Since June
But what if Charlie were separated from us?
This is exactly what happened to a Canadian girl, Ayn Van Dyke, who is autistic. On June 16, Child Protection Services (CPS) showed up at her home in Abbotsford, British Columbia, and told her father, Sean Hoare, he could voluntarily hand her over or CPS would take her from school. They did so and Ayn has not been home since. She was first placed in a “specialized hospital” for evaluation and then in a foster home, with a psychiatric nurse as her foster parent. On December 14th, she celebrated her tenth birthday, but not with her family.
As the website Justice4Ayn says, shortly after her removal from her home, Ayn was placed on three powerful anti-pscychotics, one of which was prescribed at “DOUBLE the maximum recommended DAILY dose by the attending physician(s).”
Violations of Drug Treatment Protocols in New York
The overuse of medications to control the behavior of individuals with developmental disabilities is a disturbingly common practice. The†New York Times found the that Ativan, an anti-anxiety drug with a tranquilizing effect, was more likely to be given to developmentally disabled residents in New York state group homes than multivitamins. Other drugs often used are the antipsychotics Geodon and Risperdal (which has the side effects of weight gain and tardive dyskinesia), Depakote and lithium.
Psychologists who oversaw the care of developmentally disabled adults in group homes and other facilities run by the state of New York describe a “culture in which the drugs are used to control the disruptive behavior” of those with diagnoses including Down Syndrome, autism and cerebral palsy. It’s an approach that is “increasingly discredited in the field”; one doctor, Dr. Andrew Levitas, an associate professor of psychiatry at the University of Medicine and Dentistry of New Jersey who specializes in developmental disabilities, even says that such an approach is simply a “‘mistake.’”
A former New York state psychologist, Diana Valitutto, told the New York Times that, in her view, medications “‘donít make genuine permanent changes in behavior, they simply control the client for the time being.’” All of New York’s nine large residential facilities for individuals with developmental disabilities have received citations for “repeated violations of basic protocol for drug treatment.” State officials are now exploring how other nonprofits who oversee the care of the developmentally disabled avoid using “pharmacological restraints.”
What happened to Ayn remains one of my biggest nightmares, having a child taken away from a loving home and then †heavily and overly medicated to control her behavior. Being taken from her home must have been a frightening and highly confusing experience for Ayn. It seems to me that some of the behaviors that the medications were prescribed for very likely arose because she was agitated at what was going on.†Medications can play a role for individuals with developmental disabilities but in only combination with behavioral and educational teaching and with extensive oversight by medical professionals, the support of well-trained staff and the daily, loving advocacy of parents and family.
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