How Many Stage 4 Girls are getting SS disability..
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This KFF article from 2016 is the best one I have found and indicates that under-65-ers on Medicare ARE eligible for Medicare Advantage plans. https://www.kff.org/medicare/issue-brief/medicares...
Some may find this Medicare Handbook helpful, too: https://www.medicare.gov/sites/default/files/2018-...
LoriCA, thanks so much for your response. I so sympathize with what you are going through! I have no other source of income so no real choice but to go on SSDI. It is still going to require some serious lifestyle adjustments, including probably giving up my home. It is sobering to do the mental calculation about whether I am likely to live long enough to qualify for low income senior housing which starts to become available at age 55.
Is your "expensive private insurance" an ACA plan? I am also struggling with whether to do COBRA or an ACA plan before Medicare kicks in. ACA plans are so expensive here, I don't think my COBRA will cost any more. And at least I know the coverage is good. I haven't had out of state coverage in years and none of the plans available here provides coverage at a major cancer center - which is really sad/disappointing. The lack of these features is a problem but it's not something I am giving up. Of course, my employer wants me off their plans so.... I don't know....
Like you, I can't possibly do traditional Medicare. The 20% out of pocket would be in the 6 figures annually. That leaves me no real choice but a Medicare Advantage plan. The Advantage plans here do have really high co-pays for hospital stays. Just have to hope I don't need to go to the hospital. I too have read troubling things about them. But I don't see that I have a choice. Frankly, I am hugely relieved at the prospect of having access to Medicare Advantage, because, as mentioned, the 20% out of pocket for traditional Medicare is not sustainable.
Something to think about: If you are on an ACA plan, the ones here don't even appear to be as good as the Medicare Advantage plan. It can be challenging to compare "apples to apples" but are you confident the ones available near you would really be worse? I am sure you are giving up a lot if you are foregoing the income from SSDI. Plus in my region, depending on how much subsidy you get for an ACA plan, the premiums seem not too bad for Medicare Advantage plans and the out of pocket max-es look to be a little lower. IMHO it is insane that these policies change from region to region - and that there is no out of state coverage. Just more crazy aspects of our healthcare system.
The step-therapy policy is horrifically... stupid. How could anyone even marginally health-literate with regard to recent medical advances think that this is a good idea? Was it illiteracy or greed that prompted this policy? I find no other possible explanation. And both are profoundly disturbing. Readers: Many cancer-related organizations are lobbying to make this policy unlawful. Write or call your Congressional representatives!
What if you collected SSDI for ... like.... 20 months and then went off of it? Just seems crazy not to get that benefit. You've paid for it!
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I know it's an old post but wanted to reply to Kell001:
She asked: Will I loose my Medicaid if I apply for SSD?
Based on what I know.... it depends. I believe that it would mostly depend on how much you get from SSDI. In my state, to qualify for Medicaid in 2019, your AGI must be below $17,237 per year or $1,438/month. So if your SSDI income were more than that (plus any other income and less allowable expenses) it is possible that you might lose Medicaid coverage. If it is lower, you can probably keep it. Many people who collect SSDI are dual eligible for Medicare (after 2 years or age 65) and Medicaid. Social Security can help you determine how much your SSDI would be. Read more here: https://www.ssa.gov/planners/disability/ With this information in hand, you can contact your local Medicaid office to determine whether you would continue to qualify. You can also research this on your state Medicaid web page or in many states use the Marketplace web page (https://www.healthcare.gov/) to be appropriately directed. Hope that helps.
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I am following this convo bc I am in the same boat. I am working FT but I know I won't be able to do this until 65. I am 56 now. If I go on disability I get that it will be less $ and will have make adjustments, but with the cost of insurance/healthcare it's not even close to feasible. I live comfortably with the job I have and I took the steps to do it years ago so I could live the way I wanted. I'm not going to spend time jumping through hoops for charity that might ot might not be available. So I guess for now my plan is to work til I die. I even pay extra for LTD to get the few higher percent of income, but it won't do without insurance. When the ACA started my sister and her family could not find anything lower than $1200/mo. That was with deductible so high that they would never use it. They have done without since then and to add insult to injury pay a fine every year. That is just abusive.
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Hi there, I empathize with this decision as I had to deal with it myself in the past couple of years. I don't know what states you all live in but there are many states that do offer supplemental insurance - usually referred to as medigap insurance - to people under 65 with disability. Additionally, some plans do sell to individuals in other states albeit at a higher rate. I live in Michigan and I have been covered by Medicare and a private gap plan as well as a part D plan for drug coverage and I’m in my 50s. Please do not give up without thoroughly exhausting the options. While I do pay a fair amount for my coverage it is good coverage with very little out of pocket costs for me to cover (so far!).
Also, if you are considering keeping your work coverage on COBRA, know that it can be extended for an additional 11 months beyond the usual 18 months in the case that you are disabled but you must be proactive to get this - ie, you need to notify your employer that you intend to exercise your right to it. This ensures no gap in coverage between the time of leaving employment and the two years that you must be disabled before Medicare eligibility. Your employer is allowed to charge you even more during these 11 months but at least you can maintain the coverage. I think it is up to 150% of cost. Mine went from just under $800/month on normal COBRA to around $1100/month so it was a relief when I finally got to go on Medicare.
This is confusing stuff so it does take some muddling through. I've also had to navigate getting my husband a green card and ACA health insurance since my illness brought us back to the US from living overseas. But honestly, if money and health coverage is really a hardship, I would consider moving to a friendlier state - so long as you can pick a place where you'd still have a good support network!
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Lumpie yes since we are self-employed we have to buy on the open market - ACA (it's actually Covered California here). We had an insurance broker look into it for us before we bought our 2018 policy and even a small business policy wouldn't save us money. We don't qualify for a subsidy, and for two people in our mid-50s we pay $24,000 a year for a Silver PPO. I could save a small amount with an HMO instead of a PPO, but I prefer to have the convenience of being able to go directly to a specialist without needing a referral from a PCP first. I haven't been stable since my Dx so I already have more than enough appointments without having to see a PCP who doesn't know the first thing about cancer. for referrals. A few years ago we had an HMO but we had 6 doctors leave the plan in 18 months and who wants to keep changing their PCP every few months? This year my insurance company told me I could buy directly from them instead of the open market and it would save me some money, but I was afraid that might jeopardize my existing condition protection since there was a lot of political discussion about it around the time of renewal.
HLB when I left the corporate world to strike out on my own I remember how insanely expensive the COBRA plan was. If the income change from leaving your job would qualify you for an ACA subsidy, you really have to crunch the numbers to see which plan would have the higher true out of pocket cost. They don't make it easy to do comparisons.
The year before ACA rolled out our insurance premium was $500 per month, now it is 4x higher! And it's not because of my cancer, my husband's premium is higher than mine because he is two years older. Until my Dx, neither of us had been sick or injured a day in our lives. I cried non-stop for three days and had panic attacks when I saw how high our premiums were this year. But in regard to deductibles - almost all of my treatments & visits have no deductible, but they do have a co-pay. I think last year the amount I paid in deductibles was under $100, but I hit the yearly OOP max on co-pays by the end of March (Herceptin will do that). You have to really pay attention to what is covered and how much you'll pay out of pocket on a policy. Most people get distracted by the deductible amount and don't realize it's the co-pay that can really get you (and all of my co-pays jumped up this year too, not just the premium). For example, I have no deductible for a PET/CT scan, but I have a $300 co-pay - and it doesn't count toward the deductible.
I wonder if I could get away with collecting SSDI for just under the two year mark? How would one discontinue benefits if we were collecting under the Compassionate Allowance for terminal cancer? Would we need to somehow prove that now we're not terminal? Could we start collecting again after a certain time period? That's definitely something worth researching. I could really use some of that money that I've been paying into the system since I was 17.
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MargaritaMI, where it falls apart is with expensive cancer drugs. I have the same coverage as you and am prescribed non-generic Arimidex and Kisqali which brought me to NEAD, but until I meet a $5000 co-pay in 2019, the Arimidex is $350/month and the Kisqali is $1100/month. For seniors with only social security income above the $1438/month medicaid limit, this would take most of their check.
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Wow, Dorothyfromkansas. That's a lot! So far, I've been on infusions every third week for the past nearly four years so those are covered under the medical coverage plan rather than the drug plan but it is certainly confounding. Great that you are NEAD though! Are those drugs that you take at home then? Pills? I am fortunate to have LTD through my last employer which helps since SSDI alone would not be enough for our insurance costs and living expenses but both my career and my husband's have been ruined by my illness and we pretty much depleted our savings during the immigration process when my husband was not allowed to work at all here. I worry about his ability to ever retire while I just hope to make it to retirement age. Even as I feel fortunate to have the coverage, the SSDI and the LTD, I still feel a lot of guilt about the financial destruction that this illness has and continues to impose on my family - we also have a kid in college. 😧
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Yes, they are pills for hormonal treatment taken at home. You didn't choose cancer, so no need to feel guilty--I know, easier said than done. For sure the politicians have ruined our health care system and the middle class again bears the brunt. I hope things work out for the best for you and your family.
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MargaritaMI, I am in a state that is not "mandatory issue." So far, I can't find anyone that would issue a MediGap policy - for good reason: They know ahead of time how much they stand to lose! My research does indicate that I should be able to get a MedicareAdvantage plan (HMO), but this would be my ONLY choice - take it or leave it - besides traditional Medicare (which would result in me having an @ six figure out of pocket). I guess I should consider myself lucky to be able to get the HMO. With an HMO, I just worry about what will happen if I develop serious complexities, especially something like brain mets. The prospect of not getting to chose my own specialist or surgeon for something like that is uber scary. (I have had a couple of bad experiences with with surgeries.)
Yes, correct. I can do the extended COBRA. I am contemplating whether to do that, though, since it will probably cost me something like... at least $500 more per month than an ACA plan. It is hard to know if plans are "apples to apples" even when they look like it.
I am not at liberty to move to another state right now, although I may at some point in the future.
LoriCA: you mentioned deductibles. I hardly even look at those. I know with my expenses, I will burn thru them quickly. What I look at is the "max out of pocket." That includes all amounts I pay myself. There are no policies offered where I live that have a max out of pocket less than $6000 - actually that was the number from last year. It is $7200 now. On top of premiums of over $600/mo, that is going to consume the vast majority of my disability check. I would have maybe $500 left to live on. Obviously not realistic. (In theory, I can work part time on SSDI and top that up a little as long as I stay well enough.)
I think you can decline SSDI at any time simply by providing notification. Or, since you have been self-employed, you can say that you are going back to work. I need to look back at why you didn't want to keep it for two years. I know it had to do with not wanting to get Medicare which would result in losing other health insurance coverage that you have. SS has complex provisions that encourage people to go back to work. Here is a link to *some* of that info:
https://choosework.ssa.gov/blog/2018-02-28-myth-bu...
Dorothy, you are right. It is crazy that we have to worry about this stuff owing to our massively screwed up (lack of) health insurance system! We have to keep telling our stories about financial toxicity in hopes that it becomes part of the impetus for a change in the system. A max out of pocket per diagnosis needs to be part of that! Most of us can't afford to pay what was designed to be a "catastrophic," once in a lifetime, max amount year after year.
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I applied on line last month, submitted medical documents in person and was approved in ten days for the amount I would be getting at full retirement age. August 1 was set as my disability date so my first payment will come next week. I am a little worried about the cost of my “oral chemo" under a part D plan but we'll cross that bridge when we come to it in 24months.
Lori, if you send in an application and are deemed disabled as of September 2017, you could be eligible for medicare next winter and perhaps collect a year's worth of 'back pay'. That amount might help take care of the 20% which is not covered, unless your private plan still works. Did the insurance broker do that calculation for you or were they only interested in making a sale? You should talk to someone at your social security office.
HLB, the ACA penalty/fine was eliminated by Congress so is no longer in effect for your sister's family.
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Question for the group. Sorry if this has been asked before. My mets and previous surgery make it hard to read and I have a lot of vision loss so 35 pages is a lot!
Background: I'm 31 y/o. Worked from 16 y/o up until last year around June. I don't work currently. I'm on MediCal. My MO agrees I'm permanently disabled. I've had high paying jobs, but in recent years I worked at the college I was attending part time for minimum wage. I have a total and permanent disability student loan forgiveness application pending - I was thinking of this gets approved then maybe I should look at disability. I've always had the thinking that that money is for people who are truly in need. We scrape by so I didn't think of us being worthy of taking from the pot, but now thinking of trying to save up for final expenses and be able to afford car repairs and such make me rethink applying.
Has anyone claimed disability at a young age? Everything I look at seems to be aimed at people who are much older. My concern with this is I didn't earn enough to have a disability check more than maybe $50 a month (it's still $50 more than I would have had so I would be grateful either way). What kind of hurdles has anyone in this age group faced? Should I even go through the trouble of applying...
Thanks any insight is welcome as I continue to try to read back through the threa
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Parry, I think you should go on line to create a personal mySocial Security account or, if your low vision makes that too difficult, call your local office and make an appointment. Either way, you can get an estimate of what your benefit might be, assuming you have enough work credits in the past decade.
You can have someone help by doing the data entry on the SSDI application. With a metastatic diagnosis, the Compassionate Allowance program should allow for quick approval. If your disability date is set back to a year ago, you could qualify for immediate payments since the five month waiting period is already behind you. There is also the possibility of getting ‘back pay’...
Having worked half of your young life and now contending with this crappy illness, you deserve to use the system to your advantage. Don’t deny yourself the opportunity to collect what you are owed!
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Thanks for the great info and encouragement! My DH usually helps after I spelled his name wrong on an airline ticket. Oops. Is the date of disability that date of diagnosis? I have it documented when all these things happened, but I don’t have anything from my MO declaring a date. Only her input that I am and the student loan disability form.0
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The Social Security Administration reviewer will determine the disability date from the info submitted. I think it would probably fall within a month of the metastatic diagnosis. It doesn’t really matter what the doctor says: SSA has their own set of criteria.
You will give them the right to request medical records when you submit the application. To speed things along, I printed out some pages from the patient portal available through my clinic and walked them into my local office where they made copies. I chose my first walk-in visit for back pain, the hospital admission/discharge summaries and a referral to interventional radiology which gave a nice timeline of the entire ordeal.
Good luck to you in beginning this process. It takes a while to put everything together but you can start and stop as much as needed. Hopefully, you’ll get some extra income hitting your bank account soon!
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Ok good to know! Hopefully it goes smoothly. Thanks
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Question for the group---sorry if it has been asked before.
I was diagnosed MBC Sept 2017. I continue to work full time. If/when I apply for SSD will my date of disability be Sept 2017 ( lots of documentation from medical records of mets ) or the date that I quit work and apply?? Since I have continued to work after the diagnosis will I be considered "Disabled" now? Will they say I was able to work with the diagnosis and thus not disabled.
Also, I read somewhere on this site, unsure of thread, that IF the date of disability is really Sept 2017 then I would not have to wait the 6 month period to receive money AND I would be eligible for Medicare this Sept 2019. Is this true???
I am planning on working as long as I can. When progression and change in treatment occurs then I may stop working and apply for SSD.
So many questions and trying to learn. I tried to make appt before with Soc Security Office, but they only want to see the person when they are ready to file an application not just to ask questions for the future.
Thanks.
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Candy, from my understanding, the metastatic diagnosis date would count as the start of your disability. That means thewaiting period is already behind you but, by my calculation, it would be 2 years after that point (29 months from dx) when Medicare would begin. So, perhaps more like January 2020.
You do need enough work credits within the preceding decade in order to draw the benefit however it sounds like you have that requirement met. It is confusing, even after reading on the SS website. That is probably why many lawyers make this part of their practice. Since we can take advantage of expedited process time via the Compassionate Allowance program, one shouldn't really need a JD to do the application...
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actually, if you continue working after your diagnosis, they will start counting ( your disability date) from when you stop working. The only exception is if you have drastically cut your hours down due to your illness, then sometimes you can argue that your date of disability went back to when you dropped down from from full time to part time. The 2 year Medicare wait will start from your disability date, not your date of diagnosis
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Thanks to Laurie for the clarification - it does make sense since there are limits on how much one can earn while collecting SSDI before the benefit payment is affected. However, I'm pretty sure that Medicare starts 2 years plus the 5 month waiting period after your disability date so I will have to go look at that again.
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I continued working after my mets diagnosis and when I finally went on disability, my disability date was the last date I worked, not the date that I was diagnosed ( that was 3 years earlier) . I had to still wait 5 months for my first check and 2 years for Medicare to kick in
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thank you for the information.
Kelly
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Hi all. I have posted here before and I am sorry but I still have questions. All of this is confusing to me. I ask my questions here because I have not had much success with asking the Social Security Office (I have only called them twice). I think they only want to discuss things with you if you are ready to apply, not before. Looking back at the previous posts Lauriesh may be able to help---I PM'd you. But any others please chime in.
I was diagnosed Stage 4 in Sept 2017. I have continued to work full time status since then. I do have a position that is less demanding, and for less pay, but in the same company. If I would decide to apply for Social Security Disability say now they would deem the disability date now vs Sept 2017 right? But my question really is----- Would they give me grief? Would they say " What makes you disabled now? Why can you not continue as you have? Your scans show stable, you have not changed treatments, or have increased MO visits." Would I need to show proof of change--progression on scans, change in treatments, etc. Could I be denied Disability if I am "stable"? I fear that if I quit my job and think I will get Disability payments and then don't I am screwed. I am single with only my income. I cannot give up my job and not have ANYTHING.
Why am I even thinking of going this route you may ask. I have struggled with working all this time. The fatigue. And the fighting with my boss to get time off for tests, doc appts, etc. Yes I have ADA accommodations and intermittent FMLA, but still it is a struggle. I try to schedule things on my time off, but that does not always happen. My workplace has not made things easy, I have even been made fun of by my co-workers.
Any advise??
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Candy,
You do have to stop working in order to get SSI disability income. The clock starts on the day you were unable to work. Given your fatigue, I think you could stop at any time-make sure you resign stating I can no longer do this job because of fatigue and illness. The SSI would start in the sixth full month after you have stopped working. Since you have documented Stage 4 cancer, you should have no problem qualifying for SSI disability.
1) Do you have short-term disability as a job benefit? I did and that bridged the gap until my SSI started.
Even if you don't consider using savings if possible to cover the six months.
Once you have qualified for SSI disability, you can start working part-time if you wish but it's important not to work at all for at least six months.
Your job sounds so stressful given your mean co-workers and hassles. I think you should look at the big picture and give yourself the best chance for the best quality of life.
Best wishes.
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I was Ned when I applied and there was no problem. Your disability date would be when you stop working, not when you were diagnosed. When you fill out the form, there is a question about your illness likely to end in death. You have to say “yes” to that, no matter how well you are doing. They never questioned me about why I worked for awhile after my diagnosis or anything like that.
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Chicagoan- I do have short term disability and long term disability with this company. Confusing how it all works. You have to use all your sick days/vacation days first before the short term benefit kicks in and then short term benefits are continuous vs intermittent so I cannot take a day here and a day there. A percentage of your salary, I think for 3 months. Maybe I am just not smart enough for all this, but I think the company makes it confusing on purpose. And if I quit, or am fired, then I would assume the disability benefits with the company go away. So I have to bite my tongue and soldier on to stay employed with this company until I figure out the best route to take in all this. I do have some savings, thank God, so I am planning on using that to live on for the 6 months of waiting for the Soc Security Disability to kick in.
Lauriesh-- That is good to know that you were NED when you applied. I was thinking I need to stay working, in some not-so-good situations, until I progress. Then I can prove the progression and change in treatments from first line to second line and maybe they would look favorably on that for Disability. I hope you are still doing well AND enjoying not having to work. I see on your profile MBC since 2010 !!!! Woohoo.
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I stopped working in 2014 and had some hang-ups about filing for disability, so I didn't do it right away. I didn't make much money working anyway and my husband who's always been the main source of income in our household is healthy and has a good paying job. However, I worried if the place he worked for ever closed down, what would I do for medical coverage? I figured just in case that happened, I should try to apply for disability in the meantime to be eligible for Medicare which takes 2 years to kick in after you qualify for disability.
So I applied online. This was over a year after I stopped working. And, I had been stable with no progression for about 5 years.
I didn't need to compile my medical records to send to them, I just checked a box on the the form that it was okay for them to get my medical records from my doctor. Within 6 weeks I received notice that I was approved. It surprised me it was that simple.
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Candy,
I'm glad Divine brought up health insurance. Another thing for you to check is whether your company will keep you on its health insurance plan until Medicare kicks in. Once you are approved for SSI, you will be put on Medicare coverage two years later.
My company has covered my health insurance for the past two years. I start on Medicare on May 1 but my company will still pay for my drug coverage and will serve as a back up to Medicare.
You are right-a lot of companies do not make it easy to understand disability benefits-probably because they'd rather we didn't use them. Like you, I am single, so I have had to been very careful to make sure I am covered.
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I also worked the first five years, after mets diagnosis, then applied for ssdi. There were no, why now questions at all. Approval letter received within 30 days. I also wanted to comment on the living long enough to qualify for subsidized senior housing issue.. I worked with housing programs for 30 years. There is no age requirement for most assisted housing if you are disabled. Some buildings are designated elderly only, but very few. I would check with local housing agency and ask about housing for disabled persons. Many agencies give preference to those applicants.
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Thank you all for the good conversation. It is all very confusing. And I guess kinda scary and sad that I will be going from the workforce to Disability. I have worked since the age of 15 and I am now 48. I have never been unemployed. I went from one job to the next--working my way up to a career. Our circumstance is sad. I should have several more years left in my career and my life. But now I find myself facing the end of my work life and my life on this earth.
Chicagoan- My company does offer COBRA. I guess that applies only if I stay in their good graces and not quit but transition thru company short term disability then company long term disability. If I would resign due to my health would I still qualify for COBRA???? I hear COBRA is expensive for the monthly premium. Yes I would keep my health insurance I have now (which is pretty good and has covered everything so far with a tolerable deductible and out of pocket cost). But could I afford the premium of COBRA? I am kinda in that gray area of sole income, living on Disability payments, and not qualifying for State Medicaid due to my assets.
Mirryp- I had not thought of senior housing. I live in a small community so I don't really know what we have in our area. Also, I have my own house. Still paying mortgage payments, but it is mine and I love it. I do have to hire someone to keep up the yardwork in the summers. And with senior housing I would not have to worry about that. But this is my home and I want to stay here. I also have a cat I would not leave to someone else.
I guess I need to stay in my job for a little longer. I just wish my co-workers were nicer about my situation and I wish my boss was more willing to help me in this tough time. Some workplaces would make this transition time for me more pleasant. My workplace is toxic.
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Can someone tell me....
Do I have to use medicare or medicaid if I apply for SSDisability?? I don't want to because my medical is through my husband and the military..can I keep my insurance and just get the check for disability and not the medicaid or medicare?
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