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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Marius Filip said...


I was kinda shocked by the picture you posted.

I do not want to sound too cynical, but the situation in USA or Canada is actually good. In other parts of the world, the very existence of facilities for handicapped adults is a big question mark.

I would give the example of my country. Here in Romania the government offers a recognized status for the handicapped person and with that access to public health care and some services.

Besides, a family member may register as a permanent attendant, and he receives a salary for that work, equaling about 120% of the minimum national wage.

I won't mention the paperwork to obtain such a paid 24 h a day job. Moreover, it is heavily underpaid considering the amount of effort and responsibility, but the government probably thinks "it's your relative, after all".

If there is no one to take the role of permanent attendant, an adult autistic has to be interned into a mental institution where he gets labeled as a person with schizophrenia. Sad, but true (the things start to change though, due to late autism-awareness campaigns).

In the recent years some centers started to appear for handicapped people, where they get engaged in simple jobs, have decent living and somewhat decent medical care.

But it's just a beginning, and the number of available seats is well below what's needed.

Why I am I saying all these?

Firstly, your question was a concern for my wife and I, too.

We're very aware that if our son Eusebiu does not recover, his future will become a painful issue for us as well.

Secondly, my answer to this is that, in fact, the responsibility will pass on to his three brothers. We hope that we'll not pass away before they will be able to take over the task, if necessary.

This does not diminish the importance to fight for more community-provided facilities.

But sometimes the local or central governments would not or can not do more for those people in need.

Unknown said...


Your comments do not sound cynical. And I was very shocked when I saw the picture in the Detroit News but I also believe that it is better to face reality, including unpleasant realities, rather than to ignore them. This belief puts me at odds with some elements of the autism world.

There are homeless here in New Brunswick and most of Canada. I empathize with those elsewhere in the world who have it worse but I have to advocate here - for my son, and other New Brunswick and Canadian children.


Anonymous said...

I agree with you, Harold, about facing reality. "Focusing on the positive" can only do so much; we parents whose children never recover from autism enough to live on their own face some scary future prospects. We are not superhuman and we cannot live forever; most of us will not outlive our disabled children.

I worry especially because I have a nonverbal daughter. Disabled women in instutitions have been raped and impregnated; the thought of something like that someday happening to my baby and she could not even find a way to tell anyone about it makes me ill. She is so wild and innocent and unaware of danger all at the same time; if she is like this as an adult and in an institution around strangers all day - well, let's just say it is a sobering thought.

Thank you for this blog. I swear sometimes I feel like I'm the only person who does not have her head in the sand when it comes to the future of these children. You remind me that that's not so!

Leon1234 said...

Hey, how are you doing?

GFCF Mommy Octopus said...

What will happen to my little guy if something were to happen to my husband and myself is my GREATEST fear. We keep meaning to work on a will.

This is a very real fear that many of us parents face on a daily basis.