Thursday, January 29, 2009

When I Am Dead Will My Son Encounter Frozen Indifference?



If you are the parent of an autistic child you worry about your child's future. If your child is severely autistic, if you already know that, after you die, he will be dependent on the care of strangers, then you will be haunted by worries about how he will be treated, how he will be cared for, ... his quality of life .... even his safety and security.

The shocking Max Ortiz photo was taken after Charlie LeDuff of the Detroit News was contacted by an "urban explorer" playing hockey on the frozen floor of an abandoned warehouse in Detroit with some friends. None of the men called the police and continued their game after seeing the body frozen in the ice. In Frozen in indifference: Life goes on around body found in vacant warehouse LeDuff describes the macabre scene that he found and reports on the plight of the homeless in Detroit. The photo and the story stoked my own fears for my autistic son's future AD ... After Dad.

Many of the homeless in North America would, at one time, have been housed in asylums and institutions:

In Reopen the institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds (1997) Bernard Rimland exposed the horrors that resulted from closing down institutions that provided residential care and treatment for autistic adults and other persons with developmental and mental impairments. Rimland cited the 1993 report by US Congressman Ron Wyden which noted that:

"the private sector residential facilities for the mentally retarded have become an $11 billion-a-year business.. Millions of Americans with these life-long handicaps are at risk for poor quality care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies."

Rimland cited a disturbing pattern of abuse, neglect, and mismanagement and some terrifying statistics:


"A disturbing pattern of abuse, neglect, and fiscal mismanagement has emerged:

*

"Employees at small community based facilities are often under-trained, poorly paid, and inadequately screened. As one New York State official put it: 'some consumers leave institutional programs where staff have received 100 hours of training, and move to homes where staff do not even know first aid.'
*

"Former employees of one facility reported that prescribed medications for residents are routinely discarded."
*

Dr. Cindy Ochs, of Livonia, Michigan, who cares for mentally retarded residents at about forty metro Detroit homes, stated, "They're hiring people off the street for five or six dollars an hour to care for patients who have complicated seizure disorders, feeding tubes, all kinds of problems."

Under these conditions, it should surprise no one that death rates have risen to horrifying proportions. As we recently reported (ARRI 10/4, 1996), a study by David Strauss and Theodore Kastner, based on 18,000 adults who were "clients" of the Department of Developmental Services in California from 1980 to 1992, found the death rate to be 72% higher in group homes than in asylums. A more recent study of nearly 1,900 California patients transferred to group homes from asylums in 1993-1994 showed an 82% higher death rate in group homes. In both studies, the "institution" and "community" patients had been carefully matched on all known risk factors.

Death can come quickly to those removed from institutions. Ten patients died after being discharged from the Porterville Developmental Center into group homes. "Most were middle-age and had lived much of their lives in state centers," the San Francisco Chronicle reported on February 25, 1997. "Their average life span after leaving Porterville: just 62 days."

As Strauss points out, "deaths are but the tip of the iceberg. Where there's an excessive number of deaths, there's an excess of other types of medical problems. for every death, there are many emergency hospitalizations." And, obviously, for every emergency hospitalization, there are a multitude of untold and unrecorded tales of hunger, neglect, and abuse of every imaginable kind. The situation is so clearly monstrous that even the most vocal advocates of the "close the institutions" school of thought (actually non-thought) have been forced to change their tune.


Here in New Brunswick we have made great strides in provision of services for people with autism disorders during the pre-school and school years. At the adult level though we have an antiquated, inadequate and chaotic system of residential care for autistic adults. Despite the number of persons with autism disorders and the complexity of challenges in caring for them we lump them into a general adult care system with inadequately trained staff, inappropriate locations and diets, lack of exercise and activity, and lack of security. Even stability is not guaranteed with a residential care facility closing recently with just 24 hours notice. But it is the lucky autistic adults who reside in these facilities. We have some that we have to export to other provinces, even to the US, far from family members. We have at least one autistic adults living on a general hospital ward.

We have to do something for New Brunswick adults with autism disorders. And we have to get started now.

If we do not, we have to live with the possibility that our grown autistic children will meet with frozen indifference once we are no longer around to help.
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