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  • Healthcare Plans

    Posted by Optimist on October 24, 2023 at 3:25 pm

    I suggest this platform be a place people suffering with ALS or getting for those that do create a standing topic and an information library on finding healthcare when dealing with ALS on the topics of Social Security, ACA Marketplace as well as Medicare/Medicaid. This is especially important now that the time of open enrollment is upon us. <div>

    Wouldn’t it be wonderful if some advocate organization could be the “go to” place for people with ALS to make relatively quick work of finding healthcare coverage. The diagnosis of ALS turns on a fire hose of challenges of all nature, why not remove the challenge of finding healthcare.

    Topics might include:

    1. SSDI and income – how to discern if it’s the right time to apply (took Social Security 4 months to source my brother). Will SSDI hurt my income potential, help it, or do no harm? What income is allowed at various stages of SSDI? Ex: added income is not limited in the first 9 months of SSDI from what I have been told/learned.

    2. Medicare vs Medicaid vs ACA Marketplace vs plans from employers. How to discern what direction is good for your circumstances? If you’re health plan is employer based and you can no longer work, what’s next? My brother’s coverage will not worsen BUT will cost him less than his current plan when he goes on a Medicare Advantage plan with out-of-pocket that is actually lower in 2024 than now.

    3. Financial impacts of changing from work based income and healthcare to SSDI/SSI and Medicare? Will I have to restart out-of-pocket and Co-pays if I covert during the year?

    4. What type of plan should I pursue – Medicare Advantage or Medicare supplemental plans with party D drop coverage? There appear to be no Part D plans that cover the ALS specific, and exceedingly expensive ALS “Three R” medications unless you have $250,000 to burn.

    5. Advice on researching plans on either Marketplace or Medicare.

    6. Maybe even suggest plans for each state that cover the ALS medications and all known ALS medical practitioners.

    7. List all the known organizations for ALS specific support for things like equipment, in-home care, financial support for the various costs.

    I started researching healthcare plans in September for my brother. I probably put a good 40 hours of time in researching. Why should it be this much of a challenge?

    My brother is 56, living with ALS in Upstate NY. He was recently, finally enrolled in SSDI in October receive to March and enrolled in Medicare as a result.

    I’ve spoken to several health insurance people, to people working in social security, Medicare, the ACA Marketplace, a SHIP advisor, a Patient Advocate, etc. All were helpful in some way, but none had a complete understanding of the many issues in finding healthcare that will help an ALS patient not accumulate huge medical debt while seeking treatment, and not unnecessarily aging to an already anxious situation.

    I actually had a patient advocate tell me that because my brother is on SS and therefore Medicare, that he would have to drop his current Marketplace plan, and start paying out-of-pocket again for the last two months of this year only to start again in January of ’24! Turns out, this is not true. One can keep their Marketplace plan until the new year so as to avoid these costs. This is just one example of unintended misinformation.


    Amanda replied 7 months ago 2 Members · 2 Replies
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