Tuesday, December 13, 2005

Community living vs. institutionalization

Canadians are still fumbling around, trying to decide how best to care for individuals who are mentally handicapped. A story in yesterday's Globe and Mail brought the issue to mind, but let me begin with a personal anecdote.

For four years in the late 1980s, I was the pastor of a small church in a rural setting. One day I received a phone call from the local undertaker to ask if I could perform a funeral service. The deceased was not a member of any local church; but that was the least significant detail of a terribly sad story.

Let's give him a name. He was, after all, a human being. Let's call him Greg.

Greg was mentally handicapped. His family decided that they couldn't care for him but, in those days, there was no institution dedicated to people with needs like his. So Greg was placed in the local "old age home".

And that is where he spent his entire life. No member of his family ever visited him. When he died, he did not have a single friend.

There were three people present at Greg's funeral:  the director of the funeral home, one of the staff from the seniors' residence, and me. The funeral director contacted Greg's cousin, the next of kin, but he declined the invitation to the service.

There were three people present at Greg's funeral, and we were all there in a professional capacity.

What a heartbreaking story. Jesus once spoke (compassionately) of "the least of these, my brethren". In my mind, Greg is the poster boy for that text.

Society still wrestles with this issue:  where shall we put individuals who are mentally handicapped, if their families cannot care for them?

The Globe and Mail story is the latest update on a conflict that has been playing itself out for years. The Government of Ontario plans to close three facilities that house about 1,000 severely developmentally disabled Ontarians. The government intends to move the residents into group homes and other community facilities, and shut down all three centres by 2009.

At least some family members vehemently oppose the plan. The individuals themselves presumably are not competent to express an opinion, even though the decision directly concerns them.

Let's begin by recognizing that these institutions are better than the situation Greg was stuck with. They were a progressive idea at the time. People like Greg at least get to live with their peers there. And that's where the rest of us make friends — from among our peers.

I'm familiar with one of the three institutions. It is a massive place, with its own bowling alley and indoor swimming pool, for example. The residents rarely need to leave the grounds, even for medical care. Doctors, dentists, and other medical professionals come to the facility as part of an interdisciplinary caregiving team.

But wait a minute. The residents rarely need to leave the grounds:  is this a good thing or a bad thing?

After I left pastoral ministry I spent six years working in group homes for mentally handicapped people. Long-time readers will remember a previous post in which I described a resident of one of those group homes, Bruce. Here's an anecdote from that post:
We purchased a wheelchair for Bruce for longer outings. On gorgeous summer days, when I just had to get outside, I would take him for a long walk through the neighborhood. Sometimes he would object by pulling off his shoe and wailing, but usually he quite enjoyed it. He would rest his head in one hand and growl contentedly, watching people wash their cars, or children playing.

Sometimes I would walk beside the wheelchair, pulling it along from the side to make eye contact with him. I would talk to him as we walked. He would grin with delight, maybe slap himself [for joy], and reach out one hand toward me in a gesture of affection.

Two boys came over to meet him on one memorable occasion. They asked me a few questions and looked at him with unabashed curiosity. Suddenly their eyes lit up and their jaws dropped open. "How does he do that?", one of them asked.

"Do what?", I said. They were plainly amazed, but I had no idea why.

"How does he turn his tongue completely upside down?!" These boys weren't put off by Bruce at all; on the contrary, they were deeply impressed by his novel talent.
The point is, it was good for Bruce to live in the community. It was good for him, and it was good for the neighbours, like these two boys.

But maybe community living isn't always the best arrangement. It is rarely a good idea to make one rule and apply it to everyone indiscriminately. Some people, who have severe physical handicaps, live in constant pain. Others, who have psychiatric disorders, may be a danger to themselves and others.

Remember, this process of emptying the institutions has been underway for years now. The Globe and Mail reports:
About 5,000 developmentally disabled Ontario residents have been moved from regional centres into community facilities and services over the past 25 years.

The 1,000 remaining at the three centres are among the oldest:  some are in their 60s, 70s and 80s. Others are profoundly low functioning, or without family members, or with serious behavioural problems. Many have lived in the facilities for 50 years or more.
Shouldn't the government evaluate these individuals as individuals? Who says that one solution is the best choice for everyone?

When I think about Greg, and Bruce, there's no question where my bias lies:  let's provide the necessary resources and get as many of these folks out into the community as we possibly can. For example, the first group home I worked at employed several staff with a nursing background, and they were competent to provide basic medical care in the home. In most cases, it is possible to provide care in the community.

But let's not assume it's true in every case. Let's not act out of a misguided sense of political correctness — as if to atone for past failures (which were legion).

Let's make community living our default option. But maybe the institutions also have a legitimate place in the continuum of care, in those exceptional instances when the default option isn't the best choice.


At 8:19 AM, December 14, 2005, Blogger The Misanthrope said...

It sounds like Canada is going to do what Ronald Reagan did when he was governor of California, place the mentally ill out on the streets. Then we ask where do all the lonely people come from, where do they belong?

At 10:27 AM, December 14, 2005, Blogger Juggling Mother said...

I'm not a big fan of large "never leave the grounds" institutions - it smacks of incarceration.

However, I do think there has to be residential care available for severly disabled people & good community care for those able to live alone/with family.

Greg's story is upsetting, but there are many people like him. My father has severe MS. his mental faculties are all spot on, but he is completely unable to physically care for himself. we looked into residential care for him years ago, while he was in his early 40's, either full time or "respite" care, but the onloy option available were geriatric nursing homes (not even the nice OAP homes with activities & entertainment, but the nursing homes, where seriously ill people wait to die).

"Care in the community" (where people are assisted to live on their own) has been proven not to work here in the UK, but no alternative is available. It is one of the hidden social problems that nobody wants to deal with.

Of course I can hope that in the future we will have less and less severely disabled people to deal with, as I fully support genetic research, embryo screening & know, without a doubt that I would have aborted any of my pregnancies if I'd known they were severely disabled.

At 12:09 PM, December 14, 2005, Blogger Stephen (aka Q) said...

• Misanthrope:
They had already taken that step in Ontario when I lived in Toronto in the early 1980s. It's a good illustration of the folly of saying "all institutions are bad" and discharging people into the community indiscriminately.

• Mrs. Aginoth:
I responded compassionately to the first part of your comment, about your father's MS. You're right, Greg's story is not unique, it's just one example of a hidden tragedy.

Re your last paragraph — in my view, you're advocating something akin to genocide.

If we're talking about children with no brain stem or a prognosis of death in infancy, I could agree with the decision to abort. But let's take another example. I find it particularly offensive that unborn babies who are diagnosed with Down's Syndrome are routinely aborted. The Down's Syndrome children I know are simply a delight to be around and they have a good quality of life.

Yes, they place an extra burden on their families, and as a society we should provide adequate resources to help them carry that burden. But that we, as a society, should exterminate all Down's Syndrome children by means of abortion — that is a profoundly immoral policy, in my opinion. And I think we're already doing it.

At 12:37 PM, December 14, 2005, Blogger Juggling Mother said...

Q - I guessed you would not agree, but it is absolutely what I believe. Please note the distiction of "severely disabled", but really I think it comes down to your belief of why we should have children.

I believe children are the future of our society and our race. Therefore if I KNEW positively that they will never be able to contribute in any way to that society, I would abort.

If you believe children are Gods reward for love/life/goodness etc, then obviously each pregnancy is unique and should be carried to term if remotely possible.

If you can cure genetic diseases in the parent before the pregnancy even begins, so much the better.

At 12:55 PM, December 14, 2005, Blogger Stephen (aka Q) said...

Thanks for the clarification. Can I ask, what do you mean when you refer to children who will never be able to contribute in any way to society?

I'll stick with my example of people with Down's Syndrome. I don't think you regard Down's Syndrome people as "severely" disabled, but do they contribute to society in your view?

I think people with Down's Syndrome enrich society by their very presence. They may even manage to carry out a simple job (like the folks who water the plants here in my office building).

But I wouldn't put the emphasis on holding down a job, as if that is the full measure of human worth. As I've already said, people with Down's Syndrome are a delight to be around. That is enough to qualify as "contributing" to society, in my view.

Not that I would go as far as you, and abort anyone who is deemed unlikely to contribute to society. I would be more receptive to an argument based on "quality of life". That is, we should make the decision based on what is best for the handicapped person (if it is even possible to make such a judgement), not based on that person's worth to society.

I'm afraid a lot of adults who do not have mental or physical disabilities don't contribute much to society, either.

At 1:46 PM, December 14, 2005, Blogger Juggling Mother said...

Q- I don't want to hijack your comments on a post that is important in it's own right, so I'll just say that when to abort and what counts as severely disabled has to be a personal opinion. However i passionately belive mothers have the right to make that decision, on their own criteria.

I might do a blog of my own on it sometime - maybe one of my utopian world ones:-)That will also clarify my opinion on who can contribute to society & I've already said about those that deliberately dont:-)

Also, we must remember that even if we have fantastic genetic & in-utero screening, it will not cancel all disbilities - there are illnesses that come on in later life that we are unlikely to be able to screen for (at least with current knowledge), there are ideopathic conditions that have no known genetic basis, there are accidents that leave people physically or mentally damaged. Society should have good facilities and policies for these.

However, I will say this. Our current policies of placing the burden on the families is not just inadequate for the disabled person in many cases, it also ruins the lives of any number of carers, relatives, friends, and in some cases strangers.

At 6:01 PM, December 14, 2005, Blogger Sadie Lou said...

My cousin is mentally handicapped and has been all her life. She is 33 years old but has the mentality of a 8 year old.
She lived with her mom up until about 10 years ago when my cousin expressed she'd like some independence. She wanted an adult life.
Not possible by normal standards but there was a home for mentally challenged women that was accepting applications. Jessica has been living "independently" at this home ever since. She has a job at the local Salvation Army Thrift Store. She rides the bus to and from work as well as to the mall (under supervision).
It's as independent as it gets for her. If she were really on her own, the world would take advantage of her in every possible way.
She absolutley needs supervision.
As it is--her mom had her tubes tied because she's very sexually oriented--BOY CRAZY and if Jessica got pregnant she'd have a whole slew of bad side effects--one of which would be a severe hormone imbalance that could be seriously messed up.
Anyways, I'm rambling but I think the home is an excellent way for parents with adult, metally instable children to give their kids independence and save themselves the sanity of having to supervise them their whole life.

At 7:31 PM, December 14, 2005, Blogger Stephen (aka Q) said...

Sadie Lou:
Thanks for sharing a personal story. It sounds like it has worked out well.

It also positions Jessica very well for later in life. One of the saddest things is that parents grow old and infirm, but their handicapped children continue to need a lot of supervision and support. For Jessica (and her parents) that situation won't pose such a crisis because she is already independent of them.

At 10:21 PM, December 14, 2005, Blogger Sadie Lou said...

Note to self:

Sorry for all the typos and spelling errors.
I'm glad I was still able to get my point across.
by the way--good post.


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