Three and a half years ago, I blogged here about the systemic abandonment of some the most vulnerable among us – people with developmental disabilities. In that column, I described Joe, a man arrested after being confronted by police who clearly did not know what was happening to him.
Law enforcement, court personnel and clinicians in the jail and court clinic failed to recognize Joe's problem – a developmental disability. If the problem is not recognized, how can we hope to be of any help?
As I write these words on Martin Luther King Day 2014, I am saddened to say that little has changed since the summer of 2010.
In a recent article in the Wall Street Journal, Clare Ansberry describes the plight of Deborah Clark, a 49 year old woman with an intellectual disability and schizophrenia now facing charges of murder and arson after setting a fire that killed her parents.
I will not repeat the details of the case, and refer interested readers to Ms. Ansberry's disturbing article.
The point Ms. Ansberry was making, and the point I will repeat here—again and again, if necessary—is that cases like Joe, and more tragic cases like Ms. Clark, underscore a form of systemic malpractice that pervades our states.
Like Ms. Clark, some of the cases I see represent the tragic legacy of an era in which intellectual and other developmental disabilities went unrecognized and untreated. Many were born to parents in the lower socioeconomic levels, and these parents were ill-prepared to advocate with reluctant administrators—ill-prepared to demand that their children's needs be met.
Now in their 30s, or 40s, or 50s, these people live on the margins, many still with their parents, or more often just their mothers. Their mothers are coming to the realization that their children—who continue to have daily needs which they are unable to meet on their own—will outlive them.
Where is help to come from?
Doctors and other clinicians often are poorly prepared to properly diagnose these cases. And often, people with developmental disabilities are labeled with and treated for illnesses like schizophrenia.
Some do have these illnesses in addition to the developmental disability, but many do not; and it can be difficult to come to the correct conclusion given that many people with developmental disabilities have a difficult time reporting their inner experiences.
Many of these developmentally disabled adults also develop serious addictions. In some of the most unfortunate cases, the person with a developmental disability is vulnerable to the influence of his or her cognitively intact peers, and may become involved in the criminal justice system.
Nobody seems to know what to do with these people. There is no “system” that seems to manage or provide for them.
Or is there?
Every state has an entity within its executive branch whose job it is to serve people with developmental disabilities, such as intellectual disability (the current term for “mental retardation”), pervasive developmental disabilities such as autism, and other developmental disabilities.
These state agencies are tasked with identifying individuals with developmental disabilities and then funding appropriate services for them. When I talk to my colleagues around the country, there is a consensus that there is never enough funding, and we all can readily identify people who have fallen through the cracks.
However, it is often difficult to demonstrate that the problems faced by a 50-year-old are based in developmental problems, since records from their childhood may no longer exist. At times, the denial of eligibility is based solely or primarily on the absence of contemporaneous records, even when other evidence overwhelmingly indicates that the problems began at an early enough age.
The complicating factors of later developing mental illness, drug abuse and medical problems such as head injuries often cause eligibility personnel to find that such people are not eligible, no matter how clear it is that the individual's problems began prior to age 21.
This is not to say that the people who work in the developmental disabilities world are not committed and good-hearted. I know and have worked with many whom I am proud to call my colleagues.
But cases like Deborah Clark, and those better known intellectually disabled individuals sentenced to death – Daryl Atkins and Freddie Hall – must be viewed as sentinel events, those rare events that signal that no matter how hard we are trying, and no matter how many people we are serving, our system nonetheless is failing in our mission.
We are failing.
I am not saying that even the best possible system can prevent every bad outcome. Of course, there are limits. But surely, better services, available to more people, will do a better job than the job we are doing now.
Mahatmi Gandhi wrote: “A nation’s greatness is measured by how it treats its weakest members.”
Or perhaps, given this week's commemoration, it is more appropriate to remember the Rev. Dr. King's words:
“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”
Erik Roskes, a regular blogger for The Crime Report, is a forensic psychiatrist and serves on the teaching faculty in the Psychiatry Department at the University of Maryland School of Medicine. The opinions expressed are those of the author only, and do not represent those of any of Dr. Roskes' employers or consultees, including the Maryland Department of Health and Mental Hygiene. He welcomes readers' comments. Dr. Roskes' website is http://www.erikroskesmd.com/.