Gaping Hole in the Safety Net

By Rosemary Gray-Snelgrove

I need to talk to you about the appalling reality that has been turning up in our daily papers, and in the lives of people we know – the absence of care for people with severe mental disabilities.

In this otherwise (often) enlightened era – people above the age of 17 who are mentally or emotionally unable to manage their lives are very likely to be faced with impossible options: (a)  living with their exhausted and aging parents, (b) living on the street, (c) winning the lottery by finding a space in one of the few homes available for developmentally hindered or ill adults, or (d) being placed in a setting where only physical restraint is on offer.

A Story of Autism

Last Saturday’s Toronto Star reported the case of Miles Kirsch, a 19-year old severely autistic boy, meaning that he has a disability that requires significant resources to maintain basic care.  He is unable to function with most people because of unpredictable behaviour, including hitting others or hurting himself.  His parents have gone to the limit and are at the end of being able to provide for his care, which easily reaches $400 daily (what it costs to have trained caregivers 24 hours daily).  Government funding which has been critical is about to be withdrawn.  The publicity around the case seems to have resulted last week in a space being found for him but how many other desperate families are there?

And Mental Illness

I don’t know the above family.  I do know one that is struggling with the other gap in care that marks our societal response as somewhat primitive – care for the mentally ill.   We know the “mental asylums” were closed as a move toward more humane options.  Few have been forthcoming.

To anyone working with homeless populations it’s clear that mental disability marks a large number of those living on the streets.  Personality disorders, diagnosed mental illness, mental disability due to injury – large numbers (no one seems to know how many; I’d say hundreds) are wandering the streets with little or no effective care provided.   We’re told they reject the meds – and no wonder when no one is paying attention.

Just two remembered:  a man, not English-speaking, coming to our Out of the Cold on Thursday nights all winter long in cotton summer pyjamas and flip-flops, staying the night, heading out again in the mornings.  He refused the coat, hat, boots and mitts offered to him every week.   He could find his way to the various OOTC locations, seemed to not feel the bitter cold, and unable to accept help.

Another was a man who also didn’t speak, but who carried a large leather satchel full of prescription drugs.  A doctor on site recognized that this strange mixture of psychotropic drugs had been prescribed by different doctors at different intervals, each likely not aware of the others.  This man could possibly have been taken by the police to a hospital for 72-hour observation but after that a person cannot be held and he would be back out on the street with another few prescriptions to add to his satchel.

It’s Awful for Families Who Care But Can Do Little

Both these men didn’t appear to have families trying to care for them, though once there might have been.   Parents hoping to help a grown child with serious mental health problems are particularly marooned and without resources, and how has this happened?  There is knowledge, there is ongoing brain science, we know that mental illness is widespread.  Is it shames that makes us so apparently careless and ignorant about the huge problem in our midst?

For a young adult who can’t manage out there – symptoms of mental illness having bloomed in their first years of independence  – there is nowhere to go but back home .  Even with a diagnosis (not an easy thing to accomplish) a parent trying to provide a home for a grown paranoid schizophrenic child (for instance) can be driven to distraction him or herself.   Unless one hits the right mixture of therapies (pharmaceutical, counseling, ongoing support) life is rendered miserable for all.  Without effective treatment (which is hardly unknown) the household is under seige.  Possible violence is always the elephant in the room.  Yet, hundreds of families live with this.

Hanging Out There, Alone

Michael Ifill, in his 20’s, whose story you might have read in Toronto papers last winter, was standing on the street in a hospital gown and stocking feet when he was shot dead by a police officer.  I had known him as a disturbed but likeable teenager who never hit the right niche within the mental health system and  who was in and out of suitable housing, often living on the street.  When killed, he was holding a pair of hospital scissors, having just walked out of a hospital to which he’d gone seeking help two days earlier.  There seemed no recognition among those police of the need to apply the protocols for dealing with a clearly mentally-ill person – so being killed was the end of society’s efforts to deal with his problem.   Michael was truly loved by a foster family, yet they could do nothing to help him.

Shortages, shortages

Trouble is, there is a years-long waiting list in Ontario and Quebec for psychiatric services.  Meds can be prescribed by a family doctor but without trained fine-tuning, those drugs often just don’t work well enough to be continued day in and day out by those who are floundering.

Some supportive housing is available for those with mental illness; less for those with the various forms of autism, and very little for the non-compliant homeless wandering our cities.  The “Dream Team” is a group of mental-health-system “survivors” who advocate to interested groups regarding the need for supportive housing for those with mental health problems – a great start.

We could all be advocating – there is still remarkable ignorance about how common and painful is mental illness.  But just what to advocate for?  Next week….  Also, next week I’ll include a sample of the comments – both sympathetic and chillingly cruel – about the issue of whose responsibility it is to care for those who can’t care for themselves.

PLEASE COMMENT WITH YOUR EXPERIENCE OF THESE and SIMILAR  ISSUES.

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3 Comments

Filed under A Bigger Circle, Rosemary's entries, Uncategorized

3 responses to “Gaping Hole in the Safety Net

  1. Thank you for this excellent article Rosemary. You are absolutely right. It is deplorable what is happening and we should all be advocating for change.
    It helps when the issue becomes personal, when the ones struggling are people we know and care for and we are left with no option but to petition for change.
    In my case your article reminds me of my friend Glen. I recounted the story I am repeating below in my ‘homeless’ blog which may be of some help in advancing the conversation:

    The last time I saw Glen he was in a dispute with the police. For some reason Glen goes ballistic when he sees yellow police tape and when a portion of the corner of Adelaide and Yonge was cordoned off with the yellow tape, he couldn’t restrain himself.
    Standing in the middle of Adelaide preventing rush hour traffic from getting through, Glen got in a heated exchange with another pedestrian. The pedestrian was taking issue with Glen’s behaviour when Glen yelled at him: ‘Be in my skin for a frigging hour and then tell me what you think!’
    Two policemen showed up, one trying to control Glen and the other trying to calm the very unsympathetic pedestrian.

    Within eye shot of this, my friend Hercules and I joined the exchange.
    I explained to the police that Glen was someone I had known for 4 or 5 years and could vouch that despite his behaviour, he was harmless. I suggested he might be overreacting to something the rest of us couldn’t see, since Glen has schizophrenia. Then I sequestered myself with Glen. With my arms around his neck I assured him that everything was okay, and that he couldn’t be upset just because nobody else could see what he was seeing.
    Meanwhile Hercules reassured the distressed pedestrian that Glen’s being distraught had nothing to do with him and that mental illness can be a bear to live with. They too found peace.
    The police then lead Glen away and assured us they would take care of him.

    Two weeks later, Glen was sitting against a wall, in from the street and the blistering sun.
    He told me about ‘good people’ who were looking to find a new home for him and other people who in Glen’s words, ‘meant no harm by throwing stones at me.’
    ‘I’m undieable,’ Glen insisted. ‘Look at me. I barely eat anything and my body isn’t shrinking! How is that possible? It can only mean I cannot die.’
    Glen looks like it’s been some time since he’s had a decent meal or a good place to sleep, neither which seemed to trouble him. About the only thing troubling him was the possibility that the world he lives in is different than the world I live in and did I understand.
    (see http://www.homelessguide.com/2012/07/alternate-worlds.html)

  2. Kay

    Hi Rosemary,
    As part of a group, in Toronto, that provides housing and support/care workers for adults with disabilities including young men with autism. As soon as the age of adulthood is reached the funding is stopped for people with disabilites, and parents are left floundering unless they have a support group who know where and how to obtain funding. It is not easy to access.

    In the 1990’s our group began planning housing options, when our children were young and early teens. We did not want our children in group homes and anyway there are not enough spaces available. So we did it ourselves, including building co-op housing (that is a huge undertaking in itself) and planning with the Ministry of Health’s funding how that model we envisioned would work.

    Here we are in 2012 and our adult children live safe and relatively independent lives. It isn’t perfect but it works.
    I guess the message is find people who have done this, start early, don’t expect the governement to do it for you. It is not easy, it’s stressful, it’s time consuming and frustrating, it’s debilitating – but when your adult son says I love my own home, having my own things around me, and neighbours and friends in my building that is all it’s about.

    • Dave Snelgrove

      Thanks, Kay. This is a wonderfully encouraging message. It may start some families thinking – and the internet provides means of connecting that you didn’t have in the early 90’s. It also suggests that advocates could connect around the issue and consider alternatives.. Again, thanks. Rosemary

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