Steve Pakin's "The Agenda" on TVO is usually a quality piece of work. He is a good interviewer and moderator. I was excited, then, when his show came up with a piece about life after deinstitutionalisation of the cognitively disabled in Ontario. As you may recall from a previous post, Ontario closed it's last institutions on March 31st. I was looking forward to something incisive and possibly very controversial, knowing full well that Community Living would be there and that Pakin would have looked up some dissenting views on the issue.
Unfortunately, the show was very disappointing...it was just more of the usual cheer-leading with a tiny bit of reality about the actual lack of appropriate housing for the cognitively disabled. The panel was full of the typical "disability rights advocates" with one surprising exception. I actually had to force myself to watch the whole thing, knowing the direction it was taking within two minutes...I found myself shouting at the computer screen on a number of occasions, such was my frustration (or perhaps it was indicative of my lack of sanity??).
Typically, the two disability advocates were: one senior gentleman with very mild cognitive challenges...he spoke a bit slowly. In other words, a very high functioning individual who spent 18 years in an institution, starting at the age of 20. The other advocate was a woman in a wheelchair. This woman had no cognitive disabilities and had full use of her upper body. This is disability to the outside world...a person so capable he started the "People First" advocacy group and a person in a wheelchair. That I am tired of these people representing the entire spectrum of disability is an understatement. At no point in time was there any reference to people with combined physical and cognitive disabilities, the medically fragile, or the severely autistic. There were no parents of the severely disabled, no conversation with anyone who had worked with the transition of the severely disabled...nothing. I was just pissed.
So, what is it with me and institutions? Why do I, the mother of a severely disabled child, even have that word in my vocabulary, other than to use it as an epithet?
I have been trying to work through this thought by thought...and I am, as an exercise, going to do this on the blog. Here are some of my issues:
* any reference to an institution for the disabled uses examples from the 1800's to the late 1960's, a time period when ANY institution was a place of abuse and/or neglect. At no time does anyone reference the fact that awful things were happening to every disadvantaged population in those time periods. Abuse was rampant in churches, hospitals, schools and homes and perpetrated on children, women, prisoners, visible minorities, seniors, orphans, the disabled AND those with mental illness.
* At no time does anyone point to the fact that institutions were reflections of the times, not creators of them.
* At no time does anyone point to the sweeping reforms of the '80's (at least here in Ontario) and describe some of the amazing environments that were created and maintained in modern institutions for the disabled.
* There is an assumption that all group homes are either government run or not for profit.
* There is an assumption that abuse and/or neglect does not exist in group homes or is less in group homes. A 2 minute google will show you otherwise...big time.
* No one ever makes references the range of disability: issues facing someone whose "only" challenge is facing life in a wheelchair with full use of their arms, upper body and mental faculties faces and entirely different set of challenges from someone who cannot use any part of their body and has mental deficiencies as well. Then there are the medically fragile, there are those with mild to profound cognitive challenges who have full use of their bodies, there are the severely autistic who have everything from savant abilities mixed with delays to sensory issues mixed with behavioural challenges. Oh, and people with pica, people with FAS (fetal alcohol syndrome), people with severe seizure disorders....
* No one ever points out what "24 hour supervision" or "full personal care" entails when dealing with severe disability.
* Caring for the cognitively disabled population is always presented as an either/or scenario...either group homes and "real" community living or horrible, terrible institutions hidden far, far away from the "rest" of the general population.
What do I think, then, about group homes vs. a beautiful, well-run institution?
* group homes and supported living environments are absolutely, hands down the best places for high functioning disabled populations.
* group homes have the advantage of being able to be located in the resident's original home base.
* group home employees need to be better trained and better paid.
* there should be no for profit housing for the disabled
* all environments housing the cognitively and or combined cognitively and physically disabled population should undergo frequent surprise spot checks by an independent third party.
What do I think an institution can provide that a group home cannot provide?
* Traditionally, institutional environments employed doctors, nurses, OT, PT, dentists and other professionals who had highly specialized skills and a very high comfort level around the severely disabled. This has been lost, as pointed out by the one advocate on Steve Pakin's show that made an attempt to remove the rose coloured glasses firmly fixed upon the noses of the rest of the panel, Dr. Sue Morris of the Dual Diagnosis office of the CAMH.
* An institution can provide a more highly controlled environment for those requiring it because of problems with sensory overload, violent behaviour, pica (that's a disorder that causes the sufferer to eat everything in sight...including wallpaper and drywall), the medically fragile
* An institution can provide on site services which make access easier for the severely disabled.
* In Ontario, the modernized institutions provided daily, on site access to warm therapy pools, jacuzzi tubs and sensory stimulation programs (like a Snoezelen room) suited to the severely disabled...and usually these were available to the challenged community outside of the institutions.
* The medically fragile had access to on site services from trained individuals who could travel with them to the hospitals when it was necessary. Most people do not know that most community hospitals are ill-equipped for, and staff lack training in managing the severely disabled, medically fragile population.
* Traditionally, employees of Ontario's institutions were higher paid and better trained than their group home counterparts, were unionized, and stayed on longer.
* Government had a closer eye on conditions in the institutions
Am I living in a dream world?
Possibly...I know that there are still modern institutions outside of Ontario and Canada that are dismal places to live. I know that there is little in terms of political will and money to create the type of insitutions that I dream of...but I still think it could be done. Here is my "dream residence" for the severely disabled...remember...the severely disabled (when their parents can no longer take care of them...so I am talking about an adult population here).
First off the building itself is physically beautiful. It has an atrium with lots of greenery and sunshine and a quiet, moving water area. All the paint colours would reflect calm and soothing tones. It has no more than 100 residents who are housed according to need...so, a medically fragile person may be in a situation like they had in Brantwood, Brantford Ontario...a ward room with dividers that allowed for privacy, but also for constant supervision by trained staffed...in this case, I would have no more than 4 medically fragile per room, with privacy dividers..and lots of windows. One room would serve as an infirmary or transition space for residents who had spent time in hospital for surgery. Severely autistic persons, on the other hand, for whom ambulation is not an issue, would have a completely different living environment...with personal furniture and clothing, etc. in a quiet section of the residence and the type of structure that would suit such individuals. So, the living arrangements would suit the needs of the individuals based on the severity of their challenges. The place would have a warm therapy pool, jacuzzi tubs, pet, music, movement and art therapy, PT, OT and access to medical personnel that were not afraid of them. The grounds would have wheelchair accessible paths in nature and a community garden which would be fully accessible to the public. A public park and playground would be part of the grounds, encouraging the community to come to the residents, rather than the other way around. There would be active recruitment of volunteers from the nearby community. Possibly, liaison with those individuals in group homes would allow access to the residence's facilities and for communion among the residents. It may even be possible for there to be a sheltered workshop environment for those living in other supported living environments who could manage working, but not without being in a controlled environment.
So, that's the end of this very long and wandering post...I would love to hear from anybody with a respectfully dissenting view, or from people who think this can all be accomplished by Community Living group homes.
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Unfortunately, the show was very disappointing...it was just more of the usual cheer-leading with a tiny bit of reality about the actual lack of appropriate housing for the cognitively disabled. The panel was full of the typical "disability rights advocates" with one surprising exception. I actually had to force myself to watch the whole thing, knowing the direction it was taking within two minutes...I found myself shouting at the computer screen on a number of occasions, such was my frustration (or perhaps it was indicative of my lack of sanity??).
Typically, the two disability advocates were: one senior gentleman with very mild cognitive challenges...he spoke a bit slowly. In other words, a very high functioning individual who spent 18 years in an institution, starting at the age of 20. The other advocate was a woman in a wheelchair. This woman had no cognitive disabilities and had full use of her upper body. This is disability to the outside world...a person so capable he started the "People First" advocacy group and a person in a wheelchair. That I am tired of these people representing the entire spectrum of disability is an understatement. At no point in time was there any reference to people with combined physical and cognitive disabilities, the medically fragile, or the severely autistic. There were no parents of the severely disabled, no conversation with anyone who had worked with the transition of the severely disabled...nothing. I was just pissed.
So, what is it with me and institutions? Why do I, the mother of a severely disabled child, even have that word in my vocabulary, other than to use it as an epithet?
I have been trying to work through this thought by thought...and I am, as an exercise, going to do this on the blog. Here are some of my issues:
* any reference to an institution for the disabled uses examples from the 1800's to the late 1960's, a time period when ANY institution was a place of abuse and/or neglect. At no time does anyone reference the fact that awful things were happening to every disadvantaged population in those time periods. Abuse was rampant in churches, hospitals, schools and homes and perpetrated on children, women, prisoners, visible minorities, seniors, orphans, the disabled AND those with mental illness.
* At no time does anyone point to the fact that institutions were reflections of the times, not creators of them.
* At no time does anyone point to the sweeping reforms of the '80's (at least here in Ontario) and describe some of the amazing environments that were created and maintained in modern institutions for the disabled.
* There is an assumption that all group homes are either government run or not for profit.
* There is an assumption that abuse and/or neglect does not exist in group homes or is less in group homes. A 2 minute google will show you otherwise...big time.
* No one ever makes references the range of disability: issues facing someone whose "only" challenge is facing life in a wheelchair with full use of their arms, upper body and mental faculties faces and entirely different set of challenges from someone who cannot use any part of their body and has mental deficiencies as well. Then there are the medically fragile, there are those with mild to profound cognitive challenges who have full use of their bodies, there are the severely autistic who have everything from savant abilities mixed with delays to sensory issues mixed with behavioural challenges. Oh, and people with pica, people with FAS (fetal alcohol syndrome), people with severe seizure disorders....
* No one ever points out what "24 hour supervision" or "full personal care" entails when dealing with severe disability.
* Caring for the cognitively disabled population is always presented as an either/or scenario...either group homes and "real" community living or horrible, terrible institutions hidden far, far away from the "rest" of the general population.
What do I think, then, about group homes vs. a beautiful, well-run institution?
* group homes and supported living environments are absolutely, hands down the best places for high functioning disabled populations.
* group homes have the advantage of being able to be located in the resident's original home base.
* group home employees need to be better trained and better paid.
* there should be no for profit housing for the disabled
* all environments housing the cognitively and or combined cognitively and physically disabled population should undergo frequent surprise spot checks by an independent third party.
What do I think an institution can provide that a group home cannot provide?
* Traditionally, institutional environments employed doctors, nurses, OT, PT, dentists and other professionals who had highly specialized skills and a very high comfort level around the severely disabled. This has been lost, as pointed out by the one advocate on Steve Pakin's show that made an attempt to remove the rose coloured glasses firmly fixed upon the noses of the rest of the panel, Dr. Sue Morris of the Dual Diagnosis office of the CAMH.
* An institution can provide a more highly controlled environment for those requiring it because of problems with sensory overload, violent behaviour, pica (that's a disorder that causes the sufferer to eat everything in sight...including wallpaper and drywall), the medically fragile
* An institution can provide on site services which make access easier for the severely disabled.
* In Ontario, the modernized institutions provided daily, on site access to warm therapy pools, jacuzzi tubs and sensory stimulation programs (like a Snoezelen room) suited to the severely disabled...and usually these were available to the challenged community outside of the institutions.
* The medically fragile had access to on site services from trained individuals who could travel with them to the hospitals when it was necessary. Most people do not know that most community hospitals are ill-equipped for, and staff lack training in managing the severely disabled, medically fragile population.
* Traditionally, employees of Ontario's institutions were higher paid and better trained than their group home counterparts, were unionized, and stayed on longer.
* Government had a closer eye on conditions in the institutions
Am I living in a dream world?
Possibly...I know that there are still modern institutions outside of Ontario and Canada that are dismal places to live. I know that there is little in terms of political will and money to create the type of insitutions that I dream of...but I still think it could be done. Here is my "dream residence" for the severely disabled...remember...the severely disabled (when their parents can no longer take care of them...so I am talking about an adult population here).
First off the building itself is physically beautiful. It has an atrium with lots of greenery and sunshine and a quiet, moving water area. All the paint colours would reflect calm and soothing tones. It has no more than 100 residents who are housed according to need...so, a medically fragile person may be in a situation like they had in Brantwood, Brantford Ontario...a ward room with dividers that allowed for privacy, but also for constant supervision by trained staffed...in this case, I would have no more than 4 medically fragile per room, with privacy dividers..and lots of windows. One room would serve as an infirmary or transition space for residents who had spent time in hospital for surgery. Severely autistic persons, on the other hand, for whom ambulation is not an issue, would have a completely different living environment...with personal furniture and clothing, etc. in a quiet section of the residence and the type of structure that would suit such individuals. So, the living arrangements would suit the needs of the individuals based on the severity of their challenges. The place would have a warm therapy pool, jacuzzi tubs, pet, music, movement and art therapy, PT, OT and access to medical personnel that were not afraid of them. The grounds would have wheelchair accessible paths in nature and a community garden which would be fully accessible to the public. A public park and playground would be part of the grounds, encouraging the community to come to the residents, rather than the other way around. There would be active recruitment of volunteers from the nearby community. Possibly, liaison with those individuals in group homes would allow access to the residence's facilities and for communion among the residents. It may even be possible for there to be a sheltered workshop environment for those living in other supported living environments who could manage working, but not without being in a controlled environment.
So, that's the end of this very long and wandering post...I would love to hear from anybody with a respectfully dissenting view, or from people who think this can all be accomplished by Community Living group homes.