Community Living vs. Institutional Living

As New Jersey goes through the absolutely essential process of reducing its overreliance on its outdated and expensive institutions one of the overriding concerns among the public is will there be a safe and more desirable alternative.

The answer is yes. There already is. We just need to support it and one of the things we need to do to better support those community-based options is get out of the institution business.

The overwhelming body of evidence backs this up. Not opinion. Evidence.

As with any process where vested interests are trying to block change, a few studies and anecdotal instances can be found that tell a different story. It is not possible to talk about the lives of hundreds of thousands of people without there being instances and pockets of situations that will tell just about any story you want.

What is true though, and what policy makers and conscientious public officials must base any decisions about this issue on, is the evidence is not balanced between the two options—community living versus institutional living. The jury is in on this. Like evolution and climate change, the vast majority of academic, professional and personal interests, know that across all criteria from quality of daily life to health and overall well-being community living is far better.

One of the first things I hear when talking about this with friends who don’t really know anything about it are questions about whether that is true for people with severe and profound developmental disabilities. “Oh I know it’s better for some people, but what about those who are really disabled? They say.

As the Council’s Executive Director Dr. Alison Lozano pointed out in an opinion piece earlier this year, “it is estimated that there are more than 100,000 individuals with the full range of developmental disabilities presently living in community settings in New Jersey, including people with feeding tubes and breathing tubes and people with very limited intellectual abilities (Braddock et al. 2013).” In fact, throughout the country, for younger individuals with all ranges of disabilities and their families large care facilities are not even an option. Many people aren’t even aware that in those states that still have institutions that their son or daughter could end up there is something were to happen to them.

For forty years and more, people with severe and profound disabilities have been supported successfully in community settings and studies that have been done comparing these residential options those studies, which come down heavily on the side of the community options, have included those individuals.

Put more simply, support can be given in any living environment. Why wouldn’t we have that be a home? I can’t think of any good reason.

My friends worry that the institution is safer. Not true.

A review of the national body of evidence by a group in Illinois shows that in the one area most touted by opponents to getting out of the institution business, mortality rates, that “(t)aken together, the studies show that community-based settings and institutions are similar in mortality rates. Community living does not pose a greater risk to the lives of people with disabilities.”

Mortality is a straw man argument anyway. It unfairly tweaks people’s emotions and if you targeted people who went to college compared to those who didn’t, or lived in the northeast versus the southwest, or lived in brick houses instead of wood you might find differences that could be magnified to create a talking point.

Living is what we’re talking about here. What constitutes a life we can look back on whenever we choose to do that and say “I’m essentially satisfied with that experience.” We all try to minimize unnecessary risks. We wouldn’t want to travel up the proverbial life’s creek without paddles or a water worthy boat of some kind. But we’d want to feel the air and water, see the sun, smell the earth and trees. In other words we’d want to live while we made the journey.

It’s the open boat for me, even if that exposure did come with a bit more risk.

That’s the most important thing and the reason why we are fighting so hard to do away with the institutional model for people with developmental disabilities and get those  resources into the community. We want for them what we would want for ourselves. To have the quality of life be of paramount importance. Where would that quality have the best chance to enriched?

And that’s a slam dunk. It’s the community hands down.

From the review cited above “(a)mong community-based settings to institutions, community settings were better for academic skills, community living skills, language and communication skills, motor skills, self-care and domestic skills, social skills and vocational skills (Kim, Larson, & Lakin, 2001).’ They conclude, ‘In 19 of 21 studies reporting statistically significant changes in adaptive behavior, statistically significant improvements in adaptive behavior were found to be associated with movement to community settings”

Finally, don’t infuriate me again by saying that people with some severe and profound disabilities don’t know the difference, as an unknowledgeable friend (and unfortunately some so-called very knowledgeable experts) asserted before I straightened them out at the risk of spoiling a cordial dinner.

I’ve made this point many times in this space but will do so again in closing. A person’s inability to communicate does not translate into a lack of feeling. Time and time again we have had to reassess our estimation of people with severe and profound disabilities, from the time we locked up and discounted everyone who was a little different, vulnerable or erratic to today when we continue to lock up some of those same people using the same rationalizations.

We’ve come a long way but we should have learned some cautionary lessons. We set ourselves as having some omnipotent power to say that this person deserves to be respected and supported in the best, least restrictive environment and this one does not because we “believe” they don’t know what we’re talking about. Step back and listen to how that sounds.

No, it’s still clear what we need to do. We need to get out of the institution business and bolster our obligations to provide opportunities for all people with developmental disabilities to be a part of our communities. Not a part from them.

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Disability in Focus