Guest blog post: Lucky Unit 13 by Nick Dupree
Nick Dupree is a blogger and artist who happens to love bunnies (we love bunnies too at the DVP). From his website:
I’m Nick, a 32 year-old disability rights and Medicaid reform activist, who has been advocating for ending the institutional bias and other long-term care reforms for years. I fight especially hard for awareness and action on issues that affect those of us who, like me, have complex care needs and are vent-dependent. We are a vulnerable population that spans multiple diagnoses and every age group, and, in order to stay in our homes and communities, we need change in long-term care.
As someone who lived in an institution called Coler-Goldwater because of his disability-related needs, Nick recently posted a collection of stories about his past experience. FYI, Nick now lives in the community.
Here is an excerpt from a blog post originally written on March 3, 2009:
Lucky Unit 13 (Long Essay on Institutional Living)
Because Medicaid makes getting on home care waivers ridiculously complex and difficult, whereas institutionalization is easily funded, I ended up here, at a city rehab hospital while I wait for home care to be set up for me in Manhattan. This is my waiting period.
Institutionalization, the most costly, elaborate and inconvenient option, is the easiest to get (in Medicaid law) because the 1965 Medicaid statute hasn’t been updated since technology advanced to allow severely disabled people to live at home. The best, newer services (home care) are a long road to get to, whereas they’ll happily give you an express ticket to the most difficult, costliest, dinosaur services (institutionalization). THE SYSTEM IS BACKWARDS, in an almost Lewis Carroll kind of way. I’m wondering why “fiscal conservatives” would rather keep me in a gillion dollars/day hospital instead of home care for half that.
So for now, I’m living on an island designed for the reform of 19th century plug uglies, in what I’ll call the “Alcatraz Institute for the Permanently Crippled,” in unit A13, until I get home care.
Ah, lucky unit 13, an alternate world within this alternate island universe.
Me in my room on unit A13.
For the entire blog post: http://www.nickscrusade.org/lucky-unit-13-long-essay-on-institutional-living/
To read the entire collection from his time at Coler-Goldwater: http://www.nickscrusade.org/coler-chronicles-collected-bloggings-of-institutionalization/
For more about Nick Dupree: http://www.nickscrusade.org/about/
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