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Dec 10, 2007
i finally talked to HR about going on disability. it sounds like i can keep my family on cigna insurance using corba for $1600 / month, or keep myself on cigna for $ 600 / month and buy a policy elsewhere for my family. the advantage of staying with cigna / corba for myself is that they would cover als, as its not a pre-existing condition to that policy. blue cross/shield quotes $ 400 - $ 1400 / month for the family, as a "base" rate, without any knowledge of my current status--not really, officially, technically diagnosed'ed, although they're writing me rx's coded "335.20" (als).

i guess the major expenses i'm looking at down the line are:
- powered wheelchair ($500 - $3000),
- peg ($2000)
- bipap ($2000?)
- rilutek ($900/month)
- lithium and blood pressure (minimal?)
plus some home care.

i guess it makes sense to stay on corba for myself and something else for family, but...considering that conventional western medicine (that insurance will cover) seems to offer little or nothing, i'm not sure that staying insured is worth it. if i'm willing to quit rilutek, it sounds like i might as well pay for the rest out of pocket instead of paying insurance premiums.

also, if i sign up for blue-cross/shield, and my als is denied as a pre-existing, would that only be for 12 months?
From my past experience with health insurance, I would suspect that if Blue Cross suspects that you have ALS or any serious medical problem, they will refuse to insure you at all.
Don't forget that with an ALS diagnosis you are eligible for SSDI and Medicare.

In a sense your idea to stay on private insurance is a good one, but most of your needs will be covered by Medicare. Having both private and Medicare, at the same time is common with people whose spouse works. One PALS had private, Medicare, and Medicaid paying for expenses.

I can't really offer much beyond that though. I am still working and have my private insurance.

In Colorado, there is an agency that helps people navigate the Medicare application process. Perhaps there is a similar one there in NC.

I urge careful treading in this area. Once you become eligible for Medicare, let's say by applying for SSDI, there is a limited six month timeframe where the supplimental providers cannot deny you coverage. You need to be ready and act when the time comes.

Jim West
I understand what you are saying about western medicine having "nothing to offer", however, I very strongly urge you NOT to cancel your plan. If you apply for insurance with any other health insurer, you will most certainly be denied, and if you are dishonest about your condition, they will retroactively deny you. I am a case manager for a large insurance company, these are just the facts. And, the pre-exsisting clause would rule for the course of insurance, if you somehow managed to slip thru all of those cracks. I also think you might be underestimating some of the costs, a power wheelchair can be much more than 5000.00, I have helped patients get chairs that cost 15-20 thousand. There is also hospital beds, bipap, meds, God forbid you become ill and require hospitalization, then ALL of that financial burden falls on your family. The 600.00 a month for you is cheap in comparison. If your family on the other hand is generally healthy, why not look into a cheaper insurance option for them, such as an HMO, or a high deductible plan?
And what everyone else said applies, you qualify for SSDI and medicare once even a probable diagnosis of ALS is made. They cannot deny you. From start to beginning of benefits, it should take about 5 months or so, once you are disabled.. so if you go on leave now and apply for SSDI now, you should have benefits around September. That would be a few thousand dollars you had to pay in insurance premium for yourself waiting for Medicare, but MUCH cheaper than any hospital visit or big ticket DME.
Finally, almost all senior centers that I know of offer free medicare counseling, to help you select the best plan, and you do not have to be a senior for their aide...
Hope this helps...
Andrea, wife of Pals Jim.
Don't forget before you leave work
change the long term disability insurance from company paid to self paid
if you can wait for open enrolment and the next cycle your diability will be tax free (except ssdi)
SSDI and Medicare

My mom kept her HealthPartners until the month that Medicare kicked in. It was a nobrainer for her. She's now on hospice and everything is covered.

I second the concern about the wheelchair cost. She was still on HealthPartners when she got the prescription for the powerchair (with tilt/recline/etc.). MDA paid $2000 of the deductible. But when we got the printout for the cost of the chair, it was more than $27,000. Thankfully with MDA covering the deductible we didn't have any out of pocket expense. Since then, my mom has lost the use of her hands and we're now looking at having to get the chair fitted with a chin control (only 6 months later) and we're working with Medicare/Medicaid to have the covered, otherwise, that's another few thousand dollars.

My mom is divorced, so thankfully she does not have to worry about insuring a spouse or children (my brother and I are in our 30s). But medicare, for all of its confusion, has been a godsend.
Andrea - A question for you since I am in Calif.

I am in the position perhaps facing a divorce and my insurance coverage through Blue Cross is through my husband's office. I have applied for medicare and SSDI and it should kick in in June. I consulted with an atty today and he said that if divorced I cannot continue on my husbands plan - I would have to take COBRA. COBRA would cover me for 36 months but that is it. Even if the divorce stated that my husband had to pay for coverage for me - no one would take me. I know that I could take HIPAA but not sure how much that would help me. I am early in the process with ALS - leg onset, walk with a cane and AFOs. I see that I need to look at a wheel chair soon. I do not have any liquid assets and unfortunately my husband just is not up to it - being a CALS. Thinks he is but he is not. I don't want to go through this process with someone as a CALS that doesn't "care" for me (loveless marriage to someone I am not even friends with). My son wants me to move to Dallas to live with him but that would take me away from lifelong friends who are ready and willing to do the "share the care" - but can I put that kind of burden on them.

I am worried about the insurance issue since it is so critical to have the things we need (not want but need) to live with ALS.

I'm looking for information to make an informed decision. I want to be prepared before discussing what happens next with my husband. He's an attorney and way smarter on the legal side of it than I ever could be and he definitely would take advantage of me financially if given the opportunity.

Thanks for listening. Sharonca

First, I am so sorry to hear about you facing a divorce on top of everything else. However, I also applaud and really admire the courage I hear in you. ALS makes things very crystal clear, in terms of perspective, doesn't it?

Unfortunately, your attorney is right, at least to the best of my knowledge, you can apply for COBRA thru your husbands employer, and they do have to cover you for that 36 month period, then, alas, finding other coverage would be at best very difficult, if not impossible.

That all being said, I don't know a tremendous amount about Medicare, but I do know that they seem to cover most everything. And, there are always options for anything they may not cover. (ie.loaner closets with the MDA or ALSA) In truth, Medicare is the gold standard by which insurance companies typically offer benefits, so if Medicare pays, typically private insurance pays. Now, I don't think that is true for everything, I don't think that medicare covers things like acupuncture, etc, and private insurance often does, so there are some exceptions.

This is what I would perhaps suggest, and please, don't take this as a professional counseling, but as a wife of Jim/Pals... (that is the extent of my legal disclaimer:-D)
I would get the COBRA, (By the way, HIPPA is a privacy law, protects your privacy but not your right to continue health care) and pay whatever the COBRA costs are, find out the plan terms, if you can't afford the COBRA now, typically you can retro date it, so if you get your Medicare in June, and SSDI, then maybe you could use that money to back pay.. plans are typically legally guided in that, I think it is usually 90 days to opt for COBRA... so, anyway, back to my advice, get the COBRA, once the Medicare kicks in, then get all the big ticket DME items you possibly can, get the wheelchair now. You have ALS, all you have to do is have your doctor write in that your ambulation is seriously compromised, and since you have ALS, a power wheelchair is the only logical choice, get a speech augmentation device if you can, ALL of the big dollar stuff, that way what Medicare doesn't pay your private insurance will cover the remainder. Does that make sence? Once you have as much of those things as you can possibly obtain, then medicare should be more than adequate - you can drop the private insurance.
You can get free advice on Medicare and the varied supplements from nearly any senior center. You don't have to be a senior... they are wonderful advocates/volunteers.
And finally, please, talk to an attorney about your rights, .. California is a community property state, so maybe you have no liquid assets, but your husband does, and there is no way around the fact that this is a community property state, what is yours is half his and vice is another little legal trivia, based on my experience, if your husband is trying to move/hide assets, they will be found, and if the threat of divorce is on the horizon, whether impending or not, those assets will be found. Consult an attorney.. I have a dear friend that works for an accountant that specializes in finding hidden assets in such cases... you would be amazed at what people do trying to keep money from their spouses...unreal...
I hope this is helpful, and not confusing. I would definately again suggest taking free medicare advice from one of the senior centers in your area, and PLEASE contact a reputable attorney....
Let me know if I can be useful to you at any time
Andrea wife of PALS Jim.
One more thing Sharonca, you haven't even filed for divorce, right? You should be able to stay on your husbands plan until the divorce is final, unless he files a legal seperation. I have patients that have long been seperated, living in seperate homes, and they still are on the same plan... so that buys you a min of 6 add'l months, as that is how long it takes for a divorce to be final in California...
Many other things to think about.


First let me say that I am so sorry to know of the extra stress that you are under with your marriage.

I am the sister of a PALS who has only recently been diagnosed and have been doing a lot of research trying to find out about the things that we need to know to help him. He has Medi-Cal and Medicare because of another disabling condition (autism). Tonight I tried to get a prescription for his muscle spasms filled and was told that neither Medi-Cal or Medicare will cover Skelaxin or Valium. The Valium is only $19.00 but the Skelaxin would be almost $400.00.

I suggest you look at the formulary of your current health insurance and compare it with what would be covered if you just had Medicare/Medi-Cal. You may also want to take a look at the what the eligibility requirements are for getting Medi-Cal....... because you are allowed very few assets and are required to spend down almost everything you have before you are eligible. I think you are allowed only $2000.00 including the value of your car.

The other thing that I have been looking into is the cost of in home supportive care and what nursing home or assisted living care would cost if/when needed. County provided In home supportive care appear to have eligibility requirements similar to Medi-Cal.

It appears that many care facilities cost at least $3,000. per month and Medicare/Medical pay less than a thousand, very few facilities will accept people who can't pay more. Finding doctors and other medical providers who accept Medicare and/or MediCal is also difficult because the reimbursement rates are so low (and getting lower because of the State Budget problems). You should talk with your doctors about this to find out who may or may not be able to keep you as a patient and how the change to MediCare/MediCal would impact any referrals you may need to see a specialist.

You may also want to check on the rules regarding moving to another state. I believe that many States have a 6 month waiting period before you are eligible to get MediCaid and other services. should check to see how difficult it is to find doctors willing to take Medicaid/Medicare in that area.

I hope that you have excellent legal counsel. You may want to check with more than one great attorney to make sure that you are fully informed about the rules involving divorcing a disabled spouse. You may find a way to have your separation and the support you may need too. At this point divorce may not be in your best interest......unless you want to remarry. I will be praying for you.
Andrea - Just for info - HIPAA insurance is a guaranteed insurance available for CA residents - as part of the HIPAA laws. Expensive and you get one election - period. Problem is that I will probably have to move to Texas so that would be out for me. I will have to look into whether supplemental Medi-care insurance is available if you are under 65.

As for the divorce, I don't know what I'm going to do. My attorney is really, really good. I have an appointment with a Christian counselor just to deal with the sadness of it all.

It really is a great help to know that PALS can come here and get the support we need and answers to the difficult questions.

Thank you. Sharonca
Sharonca, thank you for that information, embarassing to admit, but I only had knowledge of the privacy protection that HIPAA offers, but on the US dept of labor site, regarding HIPAA, it states this " Providing new rights that allow individuals to enroll for health coverage when they lose other health coverage, get married or add a new dependent "
I have absolutely no idea what that means, as it appiles to your situation, but it seems like that it offers an alternative to continue to purchase private insurance...
Regardless, I am glad I found that website... going to do a bit more investigating on the HIPAA laws. It also is very good information for many people on this web site. At some point in the course of ALS I would assume most people become disabled and then are forced into COBRA or Medicare alone. If people who lose thier private insurance indeed have the option to shop insurance - what a huge plus!
I will do some further investigating on this, one of my friends works in state sponsered, (ie Medicare/Medi - Cal ) plans... she would know a lot. I will post what I find out.
Another idea... our local ALSA assigned us a MSW...they are wonderful resources. Do you have one.. they always know all these tricks about insurance and such...
Andrea - wife of Pals Jim.
Sharonca, as promised I sought out some additional info for you.. this is passed on from my friend who sells insurance.
As far as this being applicable in Texas, I don't know, but HIPAA is a product of the Federal government, so I would think so.. again, don't really know the facts on that. But, I spoke with a dear friend tonight who sells insurance. She said you have 3 options, the first, and best, is to negotiate in the terms of a divorce settlement, should that be the path you chose, that your husband continue to insure you. She said she has a client that has to continue to insure his ex-wife for life and it was court ordered in the terms of the divorce.
The second option is to take the COBRA, ask them to put you on an individual plan thru your husbands employer, which she said would be cheaper.
The third is to opt for the HIPAA coverage, which does require that you not be uninsured for more than 63 days. She said you will pay a higher premium, due to your pre-exsisting condition, but that you will be insured.
I hope this is helpful, I can't attest to the accuracy, but my friend has sold insurance for decades, so I would hope that it is accurate information.
Andrea, wife of Pals Jim.
Andrea - thanks for the info.

I'm going to take my time and get all the info I can before I make any decision.

sharonca, when i started having symptoms, i found out my husband had somebody else. he cancelled my insurance n hide a lot off assets. when we divorce my lawyer got him to pay me spousal support for life b/c of my dissability. now b/c of that i dont qualify for ssi or medicaid. n medicare i dont qualify b/c i dont have enough credits. got to keep his retirement but if i take it out bfour im 59 1/2 i have to pay penalties im 53. i guess ill b dead by then.
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