Overmedicating, it's a huge problem for persons with disabilities

In Treating Disabled, Potent Drugs and Few Rules
DANNY HAKIM

Published: Thursday, December 22, 2011 at 4:30 a.m.


Something was happening to Katie Strignano.
After she was moved into a state-run group home, the 26-year-old woman, who is severely mentally retarded, started gaining weight, drooling, breaking out in pimples and pulling out her hair, leaving a bald spot the size of a softball on her head.

Her mother, Debra Strignano, suspected that someone had increased her daughter’s medication without her family’s consent.

When she asked for a copy of a consent form she had once signed for her daughter, she discovered it had been altered, tripling the daily dosage of Clonidine, which is used to control attention deficit disorder. The drug, and four others her daughter was taking, have myriad potential side effects, including rapid weight gain, skin rashes and drowsiness.

In response to questions from The New York Times, state officials said they would investigate how the consent form was changed and whether Katie Strignano was receiving the appropriate dose of medication.

“Everything with them is, let’s sedate the kid instead of trying to solve the problem,” Ms. Strignano said. “They want to dope her up; they want her to sit there like she doesn’t exist.”

Tens of thousands of powerful pills created to treat serious mental illnesses like schizophrenia are given to developmentally disabled people in the care of New York State every day.

But a review by The Times of previously unreleased records, as well as interviews with state employees, clinicians, family members and outside experts, reveals that the psychotropic medications, which alter the brain’s chemistry, are often dispensed sloppily, without rigorous or regular review, by general practitioners with little expertise in the area.

And low-level workers at state group homes are frequently given discretion to increase the medication “as needed,” despite their lack of significant training.

Psychologists who have worked inside the system describe a culture in which the drugs are used to control the disruptive behavior of the developmentally disabled — people with conditions like autism, Down syndrome and cerebral palsy — an approach increasingly discredited in the field.

The problem is that people with mental retardation, because of their condition and diminished intellectual capacity, commonly exhibit symptoms similar to those seen among people who have impulse control, anxiety or attention deficit disorders.

Psychiatrists and psychologists interviewed by The Times said those symptoms were best treated through therapy and one-on-one guidance of the developmentally disabled. But state records indicate that the doctors are often instead treating them with the psychotropic drugs, which do not address their underlying problems and can be harmful.

“It’s a mistake,” said Dr. Andrew Levitas, an associate professor of psychiatry at the University of Medicine and Dentistry of New Jersey who specializes in developmental disabilities. “Using antipsychotics to suppress behavior is an old practice used by people who aren’t acquainted with the advances in the field.”

The Times review found that 4 of the top 10 medications or supplements given to the developmentally disabled in the state are psychotropic, according to Medicaid records. In fact, developmentally disabled residents of group homes in New York are more likely to be given Ativan, an anti-anxiety drug that has a tranquilizing effect, than multivitamins, the records show.

Concern about drug use was one of the most frequently raised issues in inspection records reviewed by The Times; in the last five years, all nine state residential institutions for the developmentally disabled have been repeatedly cited by Health Department inspectors for failing to provide proper oversight of psychotropic drugs.

The drugs can have serious consequences. Risperdal, the second most frequently prescribed, was developed to treat psychotic disorders and has been approved for controlling aggression among people with autism. But its side effects can be extreme, including breast growth in adolescent boys, which in a small number of cases require mastectomies.

And even the use of the drugs to control behavior is questionable. A 2008 study published in the medical journal The Lancet found that psychotropic drugs like Risperdal were less effective at treating behavioral outbursts than placebos.

Dr. Roy Q. Sanders, who is the medical director of the Marcus Autism Center in Atlanta and has worked in New York, said, “I tell people all the time that the medications are really blunt tools when it comes to making substantial differences in behavior in developmentally disabled individuals.”

To be sure, the issue is a complicated one: developmentally disabled people are more likely than the general population to suffer from mental illness.

But the records examined by The Times show that some developmentally disabled residents received psychotropic drugs without ever getting a clear diagnosis of mental illness. Even among those who have a mental illness, the records indicate that the state’s use of the drugs can be overly aggressive.

During the last few months, as The Times has sought information about the state’s use of medications, the Office for People With Developmental Disabilities has acknowledged that there are problems, and began to develop sweeping guidelines for the use of medication. The new rules say medications “shall not be used for disciplinary purposes” or “as a substitute for supervision.”

“We know that less intrusive techniques work,” said Courtney Burke, commissioner of the Office for People With Developmental Disabilities, which oversees thousands of group homes and larger state facilities.

Ms. Burke said her agency was developing software to track the use of psychotropic drugs better and was creating a position, a chief of pharmacy, to oversee how drugs are used. New regulations, she added, would “help move the system to one that does not rely on medication or physical intervention.”

The Clinician’s View

Diana Valitutto, a former state psychologist, said she resigned from the Office for People With Developmental Disabilities in 2004 after concerns she raised about the use of psychotropic medications were ignored.

While she said she believed drugs were justified at times, she added, “from my experience, they don’t make genuine permanent changes in behavior, they simply control the client for the time being.”

State law says that “no medication shall be used for the convenience of staff” and that “special attention shall be given to those individuals receiving psychotropic medication.”

But oversight is limited. Although psychotropic drug use is supposed to be regularly reviewed, records show those reviews are seldom rigorous. The bar is higher in Massachusetts, for example, where state officials must have the approval of a judge to use drugs classified as antipsychotic.

“It’s worked well to protect people with mental health and cognitive impairments over the years,” said Marianne Meacham, general counsel at the Department of Developmental Services in Massachusetts. “It’s somewhat burdensome, but it’s definitely an important protection.”

In New York, Ms. Valitutto grew so worried about the overuse of drugs that she went to the Commission on Quality of Care and Advocacy for Persons With Disabilities, a state oversight agency, with examples of residents on what she believed were overly aggressive regimens of psychotropic medications.

“I saw people being medicated to control behavior to such a degree that to me it was obviously and clearly affecting their health, their safety, their quality of life, their ability to participate in the daily activities of living, and in some cases threatened their lives,” Ms. Valitutto said.

Ms. Valitutto said there was little consistency in how drugs were used: In central New York, she said, they were dispensed carefully and ethically. But that was not the case in the Albany area. A retired state psychologist who was approached independently by The Times vouched for Ms. Valitutto’s professionalism and offered a similar account, saying the residents in that region were often treated with multiple medications from the same class, a practice discouraged by the medical establishment.

“We would always go to drugs,” the psychologist said. “Once you get a client on a lot of medications, it’s hard to know what’s working and what’s not, and it’s hard to get them off.”


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