Abandoned Minds: Social Justice, Civil Rights and Mental Health – Part 1

“The only thing necessary for the triumph of evil is for good men to do nothing.” — Edmund Burke

“What conditions?” asked Rivera.

“In my building,” responded Wilkins, “there are sixty retarded kids with only one attendant to take care of them.  Most are naked and they lie in their own sh*t.”

This exchange was from a telephone call from Dr. Wilkins, who had been fired from Willowbrook State School in Staten Island, New York. He and a coworker were fired for their concern for the welfare of the inhabitants.  The person they were talking to was a young television reporter: Geraldo Rivera.

On January 6th, 1972, Wilkins and Rivera met at a diner.  Wilkins still had the keys to many buildings, and the plan was set to bring in a camera crew to (illegally) film the inhabitants and their conditions.  On January 10 they entered building No. 6.

In honor of May — mental health month — I wanted to highlight the day those videos were taken because it marks the beginning of the mental health movement in America.  Specifically, who received mental health services and how those services were delivered changed after those videos aired. But the powerful videos taken by Geraldo Rivera weren’t the first time the conditions at Willowbrook were noticed.

“All of us are at fault.”

In 1965, senator Robert Kennedy emerged from his tour of the Willowbrook State School.  An available video shows that he was visibly shaken by his experience and told a team of reporters:

“I think that at the state institution for the mentally retarded, and I think that particularly at Willowbrook, we have a situation that borders on a snake pit, and that the children live in filth, that many of our fellow citizens are suffering tremendously because of lack of attention, lack of imagination, lack of adequate manpower. There is very little future for these children, for those who are in these institutions. Both need a tremendous overhauling. I’m not saying that those who are the attendants there, or who run the institutions, are at fault — I think all of us are at fault and I think it’s just long overdue that something be done about it.”

But nothing was — until the videos.

“A Document for Dignity”

The atrocities captured by the Willowbrook video were so egregious that it closed as the result of the Willowbrook Consent Decree, a major contributing factor to the passage of the Civil Rights of Institutionalized Persons Act of 1980.

Mental health had officially become a civil right.

The Willowbrook Consent Decree provided for the inhabitants, and by February 1987 the last resident left.  By 1992 all were placed in small group homes. The next year Judge Bartel, at the age of 95, signed a permanent injunction superceding the 1975 Willowbrook Consent Decree. Most injunctions are to stop something from happening.  This one continued what the original decree had promised; the state “would be required to spend $2 million to create 200 places for Willowbrook transferees in hostels, halfway houses, group houses, and sheltered workshops.”  In the words of Judge Bartel, “The mentally retarded have overcome, social justice has prevailed.” The injunction “A Document for Dignity” continued what the Willowbrook decree started — an active continuation of the Willowbrook class.

It took more than 20 years, and over 100 court hearings.

The greatest change in the mental health movement in the United States came as a result of finding services for people with intellectual disabilities (the preferred term these days for mental retardation.)  This group is the highest risk population for mental illness, so it is no wonder that finding a way to ease their burden has continual ripple effects in the field of mental health.  The habilitation of individuals with intellectual disabilities has progressed tremendously since Rivera took his camera crew into Willowbrook.  But it may be the very people who would advocate for treatment who are inadvertently causing the hindrance.

Are mental health professionals biased?

Mental health professionals regularly engage in something called overshadowing, a term coined by Dr. Steven Reiss, which means that if you are intellectually disabled, other symptoms of mental illness are overlooked. This preconception creeps down into the very basis of our understanding of how to treat mental illness.  People with intellectual and psychiatric disabilities are regularly excluded from studies on the effectiveness of psychotherapy.  In other words, if you have an intellectual disability, only a small subset of psychologists will be trained to understand the treatment issues behind it.  In fact, according to Graduate Study in Psychology (American Psychological Association, 2010), of the 468 graduate psychology programs listed, only 32 report offering some training having to do with intellectual disabilities.  This means that psychology programs are not training enough psychologists to work with the most needy population.

Why should we care?

Deinstitutionalization, the effort to help people with mental illness move out of institutions into the community, didn’t always have the high profile legal and financial backing of the Willowbrook Decree.  And when people are moved out of institutions without followup and follow-along service rates of homelessness increased, as did the rates of crime and joblessness.  It is estimated that approximately one-third of the homeless are people with mental illness. The cost for institutionalization for taxpayers was high, and the quality of life for the inhabitants was low.  But simply getting people out of institutions doesn’t improve lives or the bottom line.  Getting them out into viable community placements and training programs does. Deinstitutionalization didn’t cause homelessness or criminal activity, but how it was carried out often did.

Outcome studies show we can treat a person in the community better and much more humanely for less than half of what it costs taxpayers to keep them in an institution.  If we help with supportive therapy and that individual gets a job, then he or she becomes a productive member of society and begin paying taxes. Once someone is in a group home and working, the cycle is complete.  But any progress toward these goals has value — for the dignity of the person being served and for society as a whole.  Providing for the civil rights and need for treatment of people with mental illness helps everyone.

Intellectual and Psychiatric Disabilities

Researchers have found that sub-average intellectual functioning in early life significantly increased the later development of mental health problems. Children with IQs below 70 at age 4 have a three-fold rate of treatment for emotional problems in their early 30’s. Similarly, those with borderline intellectual functioning (an IQ of 71-85) were at 150 percent increased rate of treatment for emotional problems in adulthood relative to subjects with IQs above 80.   The presence of sub-average IQ accounted for the elevation in psychopathology rates, and those also experiencing unfavorable family environments had even higher rates of emotional problems in adulthood. In other words, the lower the IQ, the greater the risk for mental health problems.

Is Money the Root of All Evil?

Poverty may be the most important predictor for becoming intellectually disabled here in one of the world’s richest countries. Financial neediness increases factors that affect intellectual development. Higher exposure to toxins, infections, accidents, poor parenting, inadequate schooling, preterm delivery and low birth weight all occur at significantly higher rates among people living in poverty. All of these contribute to higher likelihood of intellectual disability, which in turn leads to higher rates of psychiatric disability.

Furthermore, a 2007 study revealed that American families supporting a child with disabilities were:

• 79 percent more likely to worry over running out of food
• 94 percent more likely to have cut or skipped meals for financial reasons
• 73 percent more likely to have been unable to pay their rent in the past year
• 78 percent more likely to have had phone service disconnected in the past year

It’s a vicious circle: Poverty often creates a condition under which an intellectual disability is more likely, and having a child with a disability increases a family’s poverty level.

Money isn’t the root of all evil. Lack of money and dehumanizing those because of it is.

But there is good news in the midst of these facts.  There is a shift taking place in the treatment and delivery of clinical service to people with intellectual disabilities and mental illness.  In part 2 I will discuss the politics, the programs, and the research which offers hope.