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My daughter was diagnosed last year with a Leukodystrophy. Since this is all new to us, does anyone have suggestion on what services are out there? We are caught in the middle. Not wealthy enough to pay for everything. But not poor enough to qualify for anything. We are currently going through our savings and will eventually run out.
Leukodystrophies Dementia Leukodystrophy Bone marrow transplant
Where do you live? All hospitals and their associated doctors are required (by federal law) to provide a certain amount of free care to patients in their area. Most hospitals use the government established poverty level, which is very low, but others, like the Cleveland Clinic near our home, offer financial assistance and have their own "ruler" financial set of guidelines you must meet in order to qualify, and leave room on their form for extensive explanation of the financial situation and disorder. If you can find something like that, all services will be provided at no charge. This is a government program and government requirement, so I'd check with your local hospitals. You daughter is so very young, but I'd also check with Social Security to see if she qualifies for SSI. Have you checked your state's social services program? Different in every state of course. Good luck. Unfortunately, these things take a lot of work and investigation, but there are people out there who want to help. This has been my experience. My daughter has Leukodystrophy (Anterior Thining of the Corpus Callosum with Dementia - SPG11), is 28 and has been suffering from symptoms for the last 5 years. The paperwork is difficult, but the number of people truly concerned and wanting to help...they are everywhere. Best Wishes, Irene
I used to be a caseworker, so I'm writing from that experience then, not from any with our child now. There are more forms of Medicaid than just a certain level, or at least there were when I was there. There was someting called a "spendown," which uses a different income level than the "regular" Medicaid. You could do it ongoing and once you met the spendown you'd be eligible for a period of time (can't remember how long) or could do "three months prior" where they use your actual income for each of those three months, apply any bills incurred in those months and anything above that would be covered. Theoretically, that means if last month you'd made a million dollars in that month, but had two million in bills almost a million of the bills (after the spendown) would be covered. Again, that's as I knew it then; please be sure to check with a current caseworker in your state. In any case, you should probably apply if you have not already just to let them tell you what is available now. Same thing with the SSI.
Thanks for responses. We live in Illinois.
I know this is going to sound stupid, how do I get a caseworker? And what can they help me with? Is social services the same thing as SSI?
My daughter doesn't qualify for SSI. Since I have a job and we have more than $3,000 in savings. At least that is what I was told by SSI.
I'll check into the "spendown" thing. When you mention bills, are you referring to just medical bill or all monthly bills ...like mortgage, food, etc?
Regular hospital bills aren't really concerned. It's all the out-of-pockets like co-pays (for doctors, ot/pt, etc. ), equipment not covered 100%, and ot/pt visits beyond the allotted amount. Also, since there isn't a lot of traditional treatments for leukodystrophies, we have been doing alternative therapies (hippotheraphy, homepathic (sp?), etc) ...none of which are covered under insurance.
We were guided to apply for disability for our grandson, a lengthy application,but the leukodystrophies should qualify him, which is a form of medicaid and disabilty that is not measured by family income, my son-in-law is a lawyer, but still feels his son will qualify after we get the definitive diagnosis, waiting and applying is labor intensive, hope to get on the road to a plan, action, to help Jack be as healthy as possible, hoping he may even be a candidate for cord blood stem cells or bone marrow transplant, any of yu experience this?
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