Friday, March 5, 2010

A Tale of Two - Part 2

Just three miles from the ‘hospital’ I described in yesterday’s post is another facility. This one has ‘home’ not ‘hospital’ in its name, and that is one of the first indications that things are very different.

Although this home is also a facility for children with the most severe disabilities, it’s not a warehouse, not a scary place, not a place for neighborhood children to fear. It is a place where parents and some social service agencies place their children, children who need more care than parents are capable of providing. To me, it seems more like a nursing home, but not the horrible nursing homes that appear frequently in news stories.

The staff at this facility honestly and truly care for the children. They make the facility experience as home-like as possible, and go out of their way to provide a lifetime of positive experiences for the children. The attend trainings regularly to stay abreast of the best ways to educate and care for the children in the home. They call in experts in different disabilities, people who can offer ideas for positive change and improved care. In fact, many of the staff have children with disabilities themselves.

To further contrast this home with yesterday’s hospital, let’s go back to the child that passed away. Yesterday I described a callous, uncaring attitude towards the child that passed away. Unfortunately, due to the significance of their disabilities, some children who live in the home have also passed away. But how the staff handles those passings speaks volumes.

Not long ago, a child that had lived at the home for many years passed away. His mother was very, very poor but somehow managed to get to the home to visit with her son each day. Even during the heavy snow and with no buses running, the child’s mother would walk several miles to see her son. His passing was an extremely sad event for everyone, including the staff at the home. But, the young man was not rushed away – his belongings were not piled haphazardly in the middle of his stripped bed. Rather, his body was removed with the respect it deserved and his bed was made up, just as it would be every day that he lived there. A white blanket, called an ‘Angel Blanket’ by the staff, was folded across his bed. Then a basket filled with notecards and pens was placed on the bed so staff and friends could come by and write notes to the boy’s mother.

This was a child who was deeply loved and missed. This was a child who was respected. This is the type of facility and the group of people that I would want for my child if they unthinkable happened and I needed to place her there.

This is a facility that doesn’t deserve to be called an institution. Rather, it is a home just as its name implies. And I am thankful that such a place exists for those that need it.


Michelle Morgan-Coole said...

This post highlights part of th problem I have with the de-institutionalizaton movement. Based on your description, the first institution obviously needs to be closed. The second one sounds like the kind of place that is needed. And yet, although you did not specify on size, chances are both places are called "institutions" and not qualifying as "community living" would be pushed to be closed.

And yet, maybe I'm wrong but I think we NEED places like the latter, that perhaps community living isn't going to be for everybody. Yes, I realize that statistically the larger the facility, the greater the chance of abuse so maybe the push should be to keep these places small and staffed like your second example.

I would really like to know what others think...

Azaera said...

I'm on the fence on this issue, I'm leaning towards more community living, less institutionalization. But I'm only considering my own circumstances. I would want my son living in the community not in a "nursing home for children" no matter how nice the staff are, it still seems too "out of sight out of mind" if you catch my drift. However he is not severely disabled, while he is blind, and reliant on hormone replacement therapy I still believe he can have a good quality of life in a community home rather than an institution.

My tune might be different if he were severely disabled and perhaps unable to do any of the tasks required for daily living on his own. So I can really only speak from my own experience in this case. Though I do see the vast difference between the two institutions and it saddens me that such a place like the first one you described exists.