Institution Option?
"Your insurance company recommended putting Hannah in an institution. I said, 'No, these parents are taking their daughter home!'" The hospital social worker paused. "Besides, there aren't any around that will take a child on a ventilator."
I was speechless. An institution for Hannah?
For three months, we had been working to save Hannah's life. An institution, outside the hosptial itself, wasn't part of the picture. All of our energies were focused on supporting Hannah, keeping her company, letting her and her brother know they were loved. We wanted her back home. We wanted to be a family again.
I was reminded of this episode last weekend when Janette and I sat down to watch Where's Molly?, Jeff Daly's documentary about his sister. Mr. Daly's almost three-year-old sister, Molly, disappeared one day, committed to Fairview Training Center in Salem, Oregon, by his parents. This was the state warehouse for kids and adults with cognitive and behavioral disabilities. At its peak, Fairview housed thousands of people.
It is easy to look back on that time, the 1950s-1960s, and make excuses. They didn't know better then. Societal pressures were great. Today we think ourselves more evolved, civilized. The 1950s seem quaint and primitive by comparison: ancient history.
I thought that, too, in 2004, talking with this social worker. An institution? I hadn't even thought that was an option. It seemed, well, ancient history, medieval. We were taking Hannah home. We weren't saints; just parents. With the help of a Medicaid waiver program, MFCU, we were going to raise our family, our entire family, at home.
Later, I met people who didn't get the same level of support we did. They struggled to keep their kids home. Some succeeded; some didn't. In the end, at least one person I met, after years of struggling to make things work at home, institutionalized her child. I understood how she got to that decision, how painful it was. Our family was lucky to have the support we had.
Community-based support today is much more common, but the institutions still exist. In 2006, according to the Institute on Community Integration's August 2007 report, 173 large institutions (> 16 people) were still being operated in 41 of 50 US states. Total resident population with develpmental disabilities: 37,711. (Alba, Prouty, Bruininks, Lakin; pg 33).
One of them, the Eastern Oregon Training Center, operates here in my home state. Last year, after much discussion, the state chose to keep this institution open for up to four more years. Many of its residents have lived their entire lives there. It seems cruel, some argued, to disrupt and break-up their community.
The Eastern Oregon Training Center had 43 residents in June 2005; 40, in June 2006. The difference in that year? Three residents died (Alba, Prouty, Bruininks, Lakin; pg 30).
Comments
I too am from Oregon. I'm all for the closing of institutions in favor of home based supports when done right.
However; sadly, many of the folks moved out of Fairview in the 80's and 90's have not fared at all well. We need an honest and accurate accounting of how THOSE folks are before we rush the 40 people out of EOTC. They deserve APPROPRIATE supports in the community.
Posted by: David McDonald | October 25, 2007 10:29 AM
Thanks, David, for your comment.
I appreciate your perspective: appropriate community supports are critical. In my experience, this can range from in-home nursing or attendant help (our own situation) to technical supports such as communication devices to unpaid supports: just friends pitching in & hanging out with you.
Not a scientific sample, but I have met several people who lived at Fairview (several for most of their life-to-date), and they were thrilled to be living in the community, either in their own homes or in shared homes with friends & support as needed. Several also were very active in government and advocacy groups like SAL & others.
I would agree that just shutting down an institution without a support plan (and actual supports in place) would not serve people well, but I would disagree with accepting the status quo until someone gets around to doing the planning necessary to make it happen. Last year, it looked like the Eastern Oregon Training Center residents might transition into the community, but this initiative failed. I hope it will be reopened/re-examined soon. Just having people die out of an institution seems wrong to me.
Posted by: Rob at Kintropy | October 27, 2007 04:59 AM