ALS and health insurance

[llacort]

Hi All,

I'm not sure I posted here yet. My husband was diagnosed with ALS July 9th of this year.
As all of you know, we experienced shock. I think the shock is wearing off now and the reality is setting in. I think the feeling of disbelief will never leave us. I think Joey is handling it amazingly well. He prefers not to know about the disease. He doesn't read or go on the computer. He said after a day of his legs feeling very weak yesterday, "I hope to God I'll never need a wheelchair". In my mind I'm thinking, thank God he doesn't read about the disease, but also and also since open enrollment is coming up in November, I wanted to talk to him about just that, a wheelchair. I on the other hand read everything I can, know the horrible outcome and feel like a harborer of secrets. That's ok. Why visualize what's coming. My question is this, does anyone have experience with Medicare vs private insurance. My husband is 68 and we opted not to take medicare when he turned 65. He worked for the postal service and they allowed us to continue health coverage with Aetna US Healthcare. It's so confusing when you compare insurances. I know that I read somewhere a list of the specific things you need to ask your provider. The home service with my present plan is that we are responsible for 20% of the total. So that means if a nurse charges $100 a day, we would be responsible for $20 each day. I can see that getting very expensive. Again, I can't talk to Joey because its better for him not to know the inevitable yet. Does anyone have any advice about a very good health plan specifically for ALS patients?

 

[Katie C]

Have you gotten in touch with your local ALS Association chapter yet? They should have a social worker that could go over that information on a more specific basis with you.

 

[pmbenb83]

Would it be possible to get Medicare now even though you opted not to have it 3 years ago? I only ask this, because my husband worked for the Fed Gov't and was able to keep his health insurance also, but between Medicare and our insurance, we have very little medical expenses. I was hoping you might be able to pick up Medicare to help.

The ALS Association has really been a huge help too, loaning us equipment from the loan closet.

My best to you and Joey.

Take care.
Pam

 

[Pat Paine]

I have Medicare and a Senior Advantage plan and everything has been covered.I think open enrollment is in Nov.
and you can still change to Medicare as primary, you can either e mail SSA or call for appt a local SS office for help.
It is probable that Aetna could be you senior advantage plan.
good wishes to to you.
Pat

 

[sadiemae]

With a DX of ALS, he will qualify for Medicare and SSDI 5 months after the DX date. The SSDI should be filed as a "TERI" case. You can file online, by phone, or make an appt at your local office. Are you already getting regular Social security?

 

[rose]

Pam, if he opted out, back when his SSDI began, I think (from what I read when I applied) he will need to enroll for the upcoming year. Enrollment would be the month of November. With ALS being a TERI classification, he might not have to wait until January for Medicare benefits, but I'm not that sure, because he did, at one point, opt out.

 

[hopingforcure]

I think, not sure, but I think with Medicare we an opt out and in whenever we would like. That is what I was told by SS. But who knows, they told me with our diagnosed. we could do add it later if we choose. Jump in and correct me guys..

 

[Pat Paine]

look at Medicare and ALS on Google, there is no wait period for Medicare health coverage with an ALS diagnosis

 

[maryhahnward]

I use to work for a hospital and did programs for the elderly - check with local/county senior citizen program and see if they have a Medicare counselor. The counselors tend to be quite knowledgeable and helpful.

 

[llacort]

Thank you everyone for your help. I'm just worried about the home/health and want to be sure we have the best coverage possible. Happy Columbus Day to all of you.

 

[stephie]

Don't drop your private insurance! My husband has private insurance and Medicare, and neither one covers any part of home health care. From what I have heard, you are in the minority to have private insurance that will cover even a portion of home health care.

 

[DgtofTNfan]

llacort - you can check at medicare.gov for the covered benefits. Use that information to ask questions/compare to Aetna or other policies that are available to you and your husband in open enrollment. Nearly all insurance companies cover home health care. The amount they pay and the number of visits will vary.

Medicare covers home health care at 100% without a limit on the number of visits if the person meets the criteria - defined:

"Limited to medically-necessary part-time or intermittent skilled nursing care, or physical therapy, speech-language pathology, or a continuing need for occupational therapy. A doctor must order your care, and a Medicare-certified home health agency must provide it. Home health services may also include medical social services, part-time or intermittent home health aide services, durable medical equipment, and medical supplies for use at home. You must be home-bound, which means that leaving home is a major effort."

​

Many people confuse this with custodial care. Medicare does not cover custodial care nor does nearly all other medical health insurance plans. The aide mentioned above is only provided in conjunction with a "skilled" service and will be discontinued as soon as the skilled service ends.

Hope that clarifies some.
Dana

 

[llacort]

I read what you quoted from the Medicare site. Thank you. What is anyone's experience with round the clock care. I know I'm jumping the gun, but as you all know, it's hard to quiet the mind. When the time comes and Joey needs home care, nurses etc. my understanding is that Medicare will provide "part-time" not round the clock care. Since my insurance then picks up 80% and I pick up 20% of the cost, what has everyone's experience been? At my ALS hospital, I was advised to contact a Medicaid expert. We have a house and I couldn't see how that could apply to us. But after contacting the guy, he was for hire at about $2,000 if he was to come to our home. He said there were steps that could be taken. I'm not about to turn everything into my name and out of Joey's. How could I add that to whatever darkness is in his mind? He says things that break my heart that show me he doesn't realize the extent of this horror. Like, my back feels so uncomfortable, I want to go to PT to get stronger. I have to put my head down, because nothing is going to make him stronger. Today he wants to look at a walker. Everytime we have to look for something to help, it's like a needle going deeper into the wound. I'm having a sad week. I guess some weeks are better than ever. I just see his energy getting worse. When he doesn't think I'm looking, I see how fragile he looks. I CAN'T STAND IT.