O.D. Heck and My Brother Everett

        By A.G. Moore June 7

This is my brother Everett. These photos are old and unclear; they were taken at a time when the shadow of Everett’s future life had just begun to fall across my family. That shadow was complete the day my mother released him to the care of strangers.

Everett was eleven.  The birth injury he suffered many years before had consigned him to an existence without the ability to chew, walk, talk, or control his bladder and bowel functions. His eyesight was negligible, and, though he enjoyed food very much, meals were occasions of high drama because he had so much difficulty swallowing. Memory of the moment Everett left home has always caused me pain. But now that pain has become anguish as I read of Jonathan Carey, a disabled child, who was killed and tormented by his  caretaker in a New York State institution, the O.D. Heck Developmental Center.

Table IV of the Twelve Tables of Rome, which was the legislative foundation for the constitution of Ancient Rome, prescribed that an infant born deformed was to be killed. In the U. S. we like to think that our modern sensibilities preclude the enactment of such barbarous legislation. And yet – in reading descriptions of the conditions in facilities such as the one in which Jonathan Carey was killed, I wonder if the Romans were not more merciful than we are. Surely it is more humane to put a quick end to someone’s life, than to draw out the misery in circumstances of squalor and abuse.

The New York Times article which discussed Jonathan’s killing stated that the starting salary for Edwin Torado, the aide convicted of manslaughter in Johathan’s death, is $30,000 per annum. I looked up the wage scale and found the hourly wage for a Rehabilitation Aide (which I think approximates Mr.Torado’s position) listed at $15.64 (2010) an hour. As low as this pay is – too low certainly to attract employees with significant career potential – most shocking was the Civil Service information sheet on the Aide’s job.

Minimum qualification: NONE

Job Description: NONE

Examination required: NONE

I submit that ultimate responsibility for Jonathan Carey’s death rests not with the supervisors of O. D. Heck, or with the bureaucrats at the Office of Developmental Disabilities who failed to respond to complaints about flagrant abuse. I submit that responsibility rests with those who decided that human beings, helpless and unable to advocate for themselves, are to be placed in the care of individuals who are not even (by definition)minimally qualified, who with this lack of qualification are given no job description with which to measure their performance, and who do not have to compete for a government job with the most basic of screening tools, a civil service exam.

A typical wage scheme for most bureaucracies resembles an upside down pyramid. Those at the top receive the highest salaries, those at the bottom the lowest. The wage plan reflects the values of our society – although we would like to think that is not true – and those values are not very far from the infanticide prescribed by the Roman Twelve Tables. The closer an employee gets to actual hands-on care of people, the lower the pay. This applies not merely to the developmentally disabled, but to the elderly, the sick – anyone incapable of providing for themselves.

There aren’t many people in our culture who encourage their children to become health aides – this is a prescription that comes as circumstances in life narrow. Health aide is a default profession. Some of the noblest people I have ever met were health aides – people who cared for my brother Everett with the compassion of an Albert Schweitzer or a Mother Theresa. But the excellence of these aides was accidental. Nothing in their job description or education specifically trained them to be extraordinary people.

I say there should be nothing accidental about caring for those who cannot care for themselves. We can pass all the legislation that we want (for example, The Civil Rights of Institutionalized Persons Act); we can describe minimum patient to caretaker ratio, square footage of habitation, etc. None of this will make a difference in quality of care. The only thing that will make a difference is if we care enough to make those hands-on jobs valuable career destinations; if we insist that caretakers have real training: degrees in the health field and psychology. If we want to attract dedicated professionals to a hands-on position, then we have to insist that they first demonstrate their dedication by investing in the job.

There should be no position called Health Aide. There should only be healthcare professionals – people with degrees who want that job, not people who need a job. Of course pay has to be commensurate with training. And along with pay should come dignity.

I don’t think that caring for my brother was a menial chore. It was the most important job in the institution that was responsible for him. Those who performed that work should be on top of the wage and respect pyramid – because the most important thing in Everett’s institutional home was not the bureaucrats who spent the money and arranged work schedules; it was the people for whom the institution existed: my brother and his peers.

A Comment in response to this article was received on June 20, 2013:
Comments : I worked their from 1976 – 1979. I don’t know what it has become but I remember what it was. It was a home with every resident loved and respected. It was a day treatment center for those who lived at home but needed individualized help in learning communications, walking, speaking or gesturing. It was a center for teaching fine, gross, motor skills and hand eye coordination. It was lively, filled with music, and no use of any instrument to restrain or cause harm or hurt! The only restraint procedure I remember being used was the “hug hold” and that was only used on residents trying to harm themself or another resident. I trained there for my position. After training, I took a test by the center which included designing and doing a 90min program for residents that would be involved on that day .I also took the state test to be liscenced as a Mental Hygiene Therapy Aide which I had to pass in order to be employed. Not only did O.D Heck have live-in and day treatment programs they held Summer Camp for 8 weeks in the summer which included access to a pool and instructors and lifeguards! So, again, I don’t know what happened and I sure feel horrible about recent events, but back in the day, it was full scale with many most dedicated and knowledgeable caring, loving and respectful people that truly had open hearts and minds!

Organizations that Advocate for the Disabled:

The March of Dimes:

The Arc for People with Developmental Disabilities

Special Olympics

VESID: Vocational and Educational Services for People with Disabilities

BOCES: Board of Cooperative Educational Services

Reading Material

The Story of Letchworth Village and the Eugenics Movement in

A Mask for Every Face

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