As I mentioned in this past post, I’m working hard on changing my life and relocating to a new situation. I’ve begun searching harder and harder and we’ve put up a web page to explain my situation and ask for help: http://nickscrusade.org
I’ve got a lot of desire and ambition and am chomping at the bit to move out, get independence, see things, feel things, and finish college while I’m still physically able to do so. I have looked at other states’ programs for years, but not many take ventilator cases and also there is the problem of how to survive during the gap before Medicaid services can kick in (a few weeks at best). That Gordion knot has seemed impossible to untie.
But thanks to my point person in NY (she also helped set up the nickscrusade.org site and email@example.com email) I’ve come across a possible solution: go into a rehab center in NYC that specializes in ventilator care, one of the best in the country for vents, Coler-Goldwater Specialty Hospital & Nursing Facility. See more info here: http://www.nyc.gov/html/hhc/coler-goldwater/html/departments-medical-pulmonary.html
The plan would be to stay there in the short term and let all the NYS Medicaid and other services kick in, then work on independence, getting into college, etc.
I thought it would be good to let everyone know that this is the game plan at the moment. We’re currently trying to get what is required for admission to Coler nailed down, figure out the next steps, then do them. I hope to be in NY as soon as possible–if not in July, in August.
Lots of support will be needed in the first week and thereafter. Visitors will be important.
Anyone who has ideas or wants to help, please write firstname.lastname@example.org.
Thanks, and I’ll keep the blog updated with the latest details on my progress.