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.