I have 2 children with SMA type 1 which is very similar to ALS. My six year old has been vent dependent for 5 years and my 14 month old has been vent dependent for 3 months. They both use LTV 950's. We get private duty nursing coverage. I have been going to school for.. surprise.. nursing as well. I read in an earlier posting that it was possible for a parent to get paid if she was providing skilled nursing care. Obviously it would save money to medicaid to do this rather than to a nurse so that I could go out and work. NOT that I am looking for an "easy" way, because trust me nothing is easy in our lives that is for sure with double the medical responsibilities. Any info? Thanks- firstname.lastname@example.org
Yes, this is true. Depending upon the state which you live.
|<Dave Tolle RRT, RCP (ret)>|
Missy, Your inquiry is certainly admirable but I would recommend that you proceed with caution. It is a rare situation that a single household would have 2 ventilator dependent children. I doubt seriously if whatever funding gudelines would take this into consideration. They might accept your premise, take up the offer and you may find yourself short of adequate help. You have what you need now and it would be sad to see that dismantled and possibly irretrievable because of your societal concerns. Keeping eyes on a single ventilator dependent child is dicey enough but two sounds fairly daunting (especially the new one). Don't cut yourself short.
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