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In Need of Urgent Financial Advice

wheelchairwarlockwheelchairwarlock Member Posts: 23 ✭✭
10 Comments First Anniversary 5 Awesomes 5 Likes

I will try to make this message as brief as possible. I am a C-4/C-5 quadriplegic as a result of an automobile accident that happened in 2014. Since I came home from rehab hospital, my parents have had to do all my care, except for a brief amount of time, a couple months at most, when an in-home care agency was helping. At first I had full Medicaid coverage, I believe it was the EBD program, and my parents were being paid by the CDASS program for a brief amount of time. That was interrupted when I reported a Special Needs Trust that I received as the result of a settlement from my automobile accident. At first after reporting the trust, I lost all my benefits. After a while I was able to hire a lawyer (the same one who set up the Special Needs Trust) who got some of my benefits reinstated, but only to the QMB program. This doesn't cover any support services for in-home care except on a temporary basis. Needless to say, my parents continued to do all my care through the time my benefits were being reviewed by DHS. In February of this year, they told my lawyer that my case was finally resolved and that all my benefits were to be restored. Both my lawyer and I took that to mean that I would be qualified for long-term care and could start receiving support services at home. Before any agencies could start helping though, we found out that my benefits had only been restored to the QMB program. I'm reaching out to ask you for advice on what my options are, because my parents simply cannot do this anymore, they've been pushed past the breaking point already and we are now looking at nursing homes, but I'd really prefer to stay in my home if that's at all possible. The only way that could be possible though is if my parents don't have to do my care anymore. I'm willing to spend every cent I have to stay in my home but I'm also wondering if I can use the money to set myself up to live independently somewhere. Also, is there any way that I can pay my parents for all the caregiving they've already had to do for the last five years, soon to be six? They deserve to be paid and I can't even pay them myself without getting in trouble as far as I can tell.

Please help me

As one judge said to another: "Be just and if you can’t be just, be arbitrary.” - William S. Burroughs 

Best Answer

  • stephanie426stephanie426 Moderator Posts: 46 Moderator
    10 Comments First Answer 5 Awesomes Photogenic
    Accepted Answer
    Hey @wheelchairwarlock
    What State are you in? It sounds like your lawyer might not be familiar with Medicaid planning. You should be eligible to get a special needs trust and also get long term services through Medicaid. Have you reached out to your local independent living center (organization run by and for people with disabilities to help people with disabilities live in the community) ? If not, I can help you find the closest one to you. They may be able to connect you with more resources! 


  • AskNurseLindaAskNurseLinda Moderator, Information Specialist Posts: 108 Information Specialist
    25 Likes 10 Comments First Answer Name Dropper
    Hi, wheelchairwarlock, I appreciate your comments on the blog. This topic came up in the Ask A Nurse webinar today. There are so many people in this situation, including myself at one time. If I had an answer, I would share it. I have been championing this issue for years, including communications with the congresspersons and senators from my State. This is such a horrendous situation to be in. We will keep working to find a solution. In the meantime, if anyone has a suggestion, please post. Also, call the PRC at Reeve and talk with an information specialists. There are laws that can help you get started. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • wheelchairwarlockwheelchairwarlock Member Posts: 23 ✭✭
    10 Comments First Anniversary 5 Awesomes 5 Likes
    @AskNurseLinda @stephanie426 Thank you both for replying. I did end up contacting my local independence center and they put me in touch with a Medicaid consulting firm. Fingers crossed that they can finally sort this out...
    As one judge said to another: "Be just and if you can’t be just, be arbitrary.” - William S. Burroughs 
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