state support where you live

It's so sad here, Zambi, that I don't even want to get started telling you. I'll be reading your Thread though. Good subject.

I live in Tennessee.  My insurance is private and so far, it has been awful.  I now know how people can go bankrupt because of medical bills. I'm about 10 months from getting Medicare and the government fighting about healthcare reform really strikes a nerve with me.  My current insurance runs out in November and I have no idea where to turn for that month until 2018 kicks in with a new insurance.  

So this is my understanding of how it works in the US: post-injury, if you have worked enough quarters, you get SSDI. If you haven't worked enough, you get SSI. If your SSDI is below a certain level, you can maybe get both.

Depending on (again) how many quarters you've worked, you can qualify for Medicare (which will be deducted from your SSDI payments). Medicare will pay 80% for DME that they agree is necessary. If you have secondary coverage, they might pick up the balance. Maybe. If they feel like it. They don't help with transportation. They will cover home care (nursing and therapies) if you are considered homebound and if your doctor writes a prescription. Medicare does not cover any PCA services at all.

Medicaid, which is much better about covering DME than Medicare, is income and savings dependent - basically, you can't have any of either. Medicaid will cover some transportation costs - ie, to medical appointments. Sometimes medicaid covers PCA services and sometimes not - it depends on the state you live in and how well funded they are.

If you can work and choose to work, you have to keep your earnings below a certain level (some of which can be done by deducting costs for things you need in order to work) or you lose SSDI/SSI/Medicare/Medicaid.

Vocational rehabilitation will cover things like driving evaluations and (depending on income and assets) vehicle adaptions.

In most states service delivery is very fragmented and it's super tricky to get all your ducks in a row. It takes many people years. And this is one of the advantages of the big name rehabs - they provide some ongoing case management and it really helps to get set up.

Sam, your family is right. Something is wrong with what's happening to you with Medicare. You should be eligible for original Medicare A&B (and all the advantage plans) 24 months after SSDI started, and Medicare A&B (at least where I live) cost about $250/month. You might try talking to a local ILC and see if they have an expert (ie volunteer attorney or social worker) who can figure it out.

The amount you get from SSDI depends on your pre-injury earnings. SSI is capped.

I don't know how high-level quads manage. Either paying out of pocket or family and/or friends doing all personal cares or medicaid nursing homes. There is a medicaid program to move folks out of nursing homes into private residences that will supply PCAs and modify bathrooms, help subsidize equipment (hoyer, hospital bed rentals) but in many states there is a waiting list - you can be eligible for the program but it's full, and so you have to wait until there's an available slot. In some states that waiting list is seven years long. Other states just close the list and open it for brief periods for folks to sign up. Vocational rehabilitation has the same kind of funding issues - you can qualify for services and not receive them for years because the funding is exhausted by the existing client load.