The Drugging of the Developmentally Disabled in State Institutions

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.

Related Care2 Coverage

Ayn Van Dyke Hasnít Been Home All Summer

What Happened to Ayn Could Happen to Any Autistic Child

Kentucky School Stuffs Autistic Boy Into a Bag

 

Photo by Aleksa Lukic via Wikimedia Commons

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68 comments

Fred Hoekstra
Fred Hoekstra3 years ago

Thank you Kristina, for Sharing this!

Leisa Bailey
Leisa Bailey3 years ago

Thanks for the information

Betsy G.
Betsy G.4 years ago

I know how my disabled brethen feel about being locked up in the mental hospital and be victimized by Forced Prescription Drug Abuse or FPDA.

FPDA killed Sarah Elizabeth Crider, a martyr at 14, just for having autism and schizophrenia, who was murdered by these evil drugs and the cruel Georgia USA Department of Human Resources, now known as the Department of Human Services, grownups.

Personally, they should have sent Madam BJ Walker and Gwendolyn Skinner to jail for what they did to Sarah Elizabeth Crider, not get a slap on the wrist by the US Department of Justice grownups.

And I would have been more than honored to be the star witness in their show trial in Federal US District Kangaroo Court and be the one to read the victim's impact statement and speak on behalf of these poor defenseless disabled prisoners of conscience or DPOCS, who can't speak for themselves and demand that Madam BJ Walker and Gwendolyn Skinner be prosecuted for their shameful crimes against the disabled citizens.

And speaking of them, the state of Georgia is under strict orders by the US Department of Justice to close down all the mental hospitals and put the money that was meant for institionalization into community based services, as per "The Pardon Of The Disabled", otherwise known as The Olmstead Decision of 1999, aka The Olmstead Settlement of 2010, aka The Olmstead Pardon.

DANGER WOMAN

Joy Dantine
Joy Dantine4 years ago

THERE IS ABUSE AND MISUSE. IT IS MOST GRIEVOUS TO RELIZE BOTH PROFESSIONALS THAT ADMINISTER AND PROFESSIONALS THAT INGEST ARE AT THE TOP OF THE LIST ON BOTH SIDES OF THE AISLE. I ADMIT I HAD BEEN SUBJECT TO BOTH ABUSE AND USE - FIRST ABUSE FOR SOCIAL AND EMOTIONAL TRAUMA BY MYSELF WITH A COCAIN STINT THEN WHEN HEALED BY MY OWN HAND, SOUGHT PROFESSIONAL AID AND WITH PROFESSIONAL USE, NO LONGER NEED ANYTHING TO ANY GREAT DEGREE. GOOD LUCK TO ALL THAT ARE IN THE SAME BOAT AS I ONCE WAS. KNOW THE DIFFERENCE BETWEEN ABUSE AND USE.

NO NO NEWS AM Rumbak
Ana R4 years ago

:((...

Gina Caracci
Gina Caracci4 years ago

Not too long ago 20/20 had a special that showed this is also happening with foster children. Seems all those wanting people to have more and more children have missed that there are already millions of children in foster care and orphanages waiting for someone to love them..

Gina Caracci
Gina Caracci4 years ago

We need more people to make sure this doesnt happen! We need a department not controlled by the govt or pharm companies to go in and shut these places down or fine the crap out of them until it stops. This is UNACCEPTABLE!!!!!..Next thing they will be 'accidentaly' euthanizing patients..it absolutely disgusts me what people do to eachother, but when it comes to those who cannot protect or stand up for themselves, its up to the rest of us to do something about it. the govt should be dealing with these issues rather than voting themselves raises and all the other crap thats going on, but they are so far up the butts of pharm companies and other money handouters that they DONT CARE.

june t.
june t.4 years ago

They over medicate seniors also, to shut them up - they might ask for some help to use the bathroom or something, and the workers don't have the time to help them. We have to stop allowing this to happen, but how do we stop it?

lis Gunn
lis Gunn4 years ago

A very sad indictment on the health care system and on the whole pharmacuetical industry. Obviously it is easier to "medicate" a patient to keep them quiet and manageable in overworked state institutions (does "state" mean that they are state funded, no health insurance?) and the author's experiences indicate that home care and careful monitoring of suchpatients is far preferable to being in an institution. However, such care requires some financial commitment that many would not have.

The pharmaceutical industry makes obscene profits from its medications and while there have been breakthroughs in treatment of neurological conditions, there is are many unknowns. eg the use of anti seizure drugs in the treatment of bi-polar syndrome or why "speed" is given to ADHD children. Why, even so many apparently "normal" people are busy taking Prozac and its cohorts.

Kathryn Edwards
Kathryn Edwards4 years ago

Yet another problem that we will not face in the USA. They hire the least capable to handled these people which spend little or no time with the patients make a huge amount of money and the state thinks this is just fine.
Taking a child away from the parent is the last thing that the government should be doing but it is happening more and more. I want to know why this child was taken away from her parents?
I hope they have a plausible reason.
We have so many foster children in the system and the government is always trying to find more people to take them and we have all heard the horror stories about this arraignment, sure there are good homes but how many are put in more abusive homes then they came from.
What happened to working with the parents and teaching them how to raise their children and cope with their problems? Or is their not enough money in it for the doctors and the people who take care of these people with disabilities are paid so little that it is a horrible situation.