My name is Melanie and I live in Boston, MA. There is a program here unlike any other in the country which I think should be available nationwide. It is funded by Medicaid so there is an income requirement...but a good lawyer can often help you set up arrangements to deal with that.
In this state, young disabled adults can have assests and still qualify - very different from other states.
After assessment from a nurse, The program provides home health aides - trained and untrained who are paid $12 an hour. These people work with all disabilities - and without question SCI - quad and para are included with all the skilled care involved.
I currently am approved for 63 hours a week. You must find these aides but there are agencies to help with that. It falls under the Independent Living Center Philosophy of patient driven control.
I have MS not a SCI but my disabilities have a lot of similarities at this point (bladder and bowel issues, leg paralysis, confined to a wheelchair.
If Massachusetts can provide tihs help (and I don't know how they afford it but they do) - there is no reason why other states can't follow suit. I think it should be demanded. I wanted to contact Obama about this as part of the health care plan.
The initiative behind this is to help people stay living independently in their homes and give caretakers help and respite.
Other countries, eg. Scandanavia, provide this through government healthcare.
I feel there should be a lobby for this kind of care to have it available nationwide.
While waiting for a cure, this kind of service would go along way to improve the daily quality of life for all that have to deal with the challenges of serious disability.
Massachusetts health insurance was one model the President looked at - I think this program is another one that needs to be looked at.
How to do it is what I'm still trying to figure out. We need voices to speak up and I know many have no idea this exists in at least one state.
Just wanted to share that info with everyone.