[Mariel]

I just talked to a financial counselor on the phone, whom a realtor recommended, and one question I had (which she could not answer) is what happens to one's medical care if one is on Medicaid and needs to do an "extra" thing like to go Mayo for a p32 shot. The trip plus co-pay in February cost about $2000, and I might need to do it again, perhaps even two times a year,
although if I was sick enough to have to be in a Medicaid facility I might not be able to travel to Mayo anyway.

But the question arose. Now I'm doing fine financially, living in my own home, but if I went to an independent living and then needed assisted living, I would probably have to spend down my money (mostly pensions and Social Security) and a small bank account, very small. So would they let me have $4000 a year to go to Mayo, or would that treatment (p32 shot) be automatically cut off?

Medicare pays for my p32 ($18,000 a shot) but I have a $600 co-pay plus airplane and motel and taxi fees. I may not have to go back but the doctor at Mayo said most people do have to return when their platelets go up again.

This is not an MS condition, but I thought someone on this board would have some idea about the "ramifcations" of this. This condition is from Polycythemia Vera, but I also have MS and Porphyria dx's.

I have been thinking of moving into an "independent living", which I could afford, but if I have to pay for "assisted living", I will not have enough, and will have to spend down my resources to zero to even try to get Medicaid. I gather it is a struggle to qualify for Medicaid, but some independent living facilities do assist you with this and have some knowledge.

This is a grey area of medical expenses which is not well known, not even known at all by this financial counselor who came highly recommended, and she does not even know who else to call. I have found this something which can't be figured out, as I've tried to figure it out even before my husband died three and a half years ago, and we needed to consider moving to an independent living facility for him.
There is a huge financial differential between independent living costs and assisted living costs, which some may be aware of.

If anyone has thoughts, I welcome them.

[Marlene]

When John was in Hopkins, they have social workers to help patients with all the insurance/medcare/medicaid issues. I would think the Mayo will have the same resources.

[new2net98]

Originally Posted by Mariel

I just talked to a financial counselor on the phone, whom a realtor recommended, and one question I had (which she could not answer) is what happens to one's medical care if one is on Medicaid and needs to do an "extra" thing like to go Mayo for a p32 shot. The trip plus co-pay in February cost about $2000, and I might need to do it again, perhaps even two times a year,
although if I was sick enough to have to be in a Medicaid facility I might not be able to travel to Mayo anyway.

But the question arose. Now I'm doing fine financially, living in my own home, but if I went to an independent living and then needed assisted living, I would probably have to spend down my money (mostly pensions and Social Security) and a small bank account, very small. So would they let me have $4000 a year to go to Mayo, or would that treatment (p32 shot) be automatically cut off?

Medicare pays for my p32 ($18,000 a shot) but I have a $600 co-pay plus airplane and motel and taxi fees. I may not have to go back but the doctor at Mayo said most people do have to return when their platelets go up again.

This is not an MS condition, but I thought someone on this board would have some idea about the "ramifcations" of this. This condition is from Polycythemia Vera, but I also have MS and Porphyria dx's.

I have been thinking of moving into an "independent living", which I could afford, but if I have to pay for "assisted living", I will not have enough, and will have to spend down my resources to zero to even try to get Medicaid. I gather it is a struggle to qualify for Medicaid, but some independent living facilities do assist you with this and have some knowledge.

This is a grey area of medical expenses which is not well known, not even known at all by this financial counselor who came highly recommended, and she does not even know who else to call. I have found this something which can't be figured out, as I've tried to figure it out even before my husband died three and a half years ago, and we needed to consider moving to an independent living facility for him.
There is a huge financial differential between independent living costs and assisted living costs, which some may be aware of.

If anyone has thoughts, I welcome them.

When my mom & aunt placed my grandmother in a nursing home; the counselor from the home took them aside & told them to have my grandmother "gift" her daughters a set amount, as a living bequest; I don't know if this is an option for you...then my mom & aunt could "help" her out, from these funds, at their discretion...to help her with medical expenses. This way, Grandma didn't lose her assets & my mom & aunt could take the medical expenses off their taxes.

Grandma got alot of happiness out of doing this & it was a win-win when she needed extra stuff at the nursing home. You'll have to verify it before doing it. No one got in trouble for doing it (Uncle was attorney & he didn't find anything wrong with it). Good Luck!

[Dejibo]

Originally Posted by Marlene

When John was in Hopkins, they have social workers to help patients with all the insurance/medcare/medicaid issues. I would think the Mayo will have the same resources.

exactly what I was going to say!

[Mariel]

As for "gifting" to relatives, I believe the amount is severely limited, and you'd have to do it before going into the facility, so you probably would not be able to gift enough to last several years at $2000-4000 a year.

I would have to talk to Mayo on the phone about this, as going there is a long and expensive process, as I recounted--the plane, the taxis, the motels, and so forth being $2000 each time, including the co-pay. If I have to go to Mayo again, I will ask for a Social Worker. I would have to ask ahead, as when I went last time I was just going to the radiation oncology doctor and nothing else was scheduled...but I will schedule ahead.
However, I need to know pretty soon unless I just stay in my home here and don't go into a facility soon. Maybe they'd talk over the phone about it, I'm not sure.

I also was at Hopkins some time ago but they didn't help with my Polycythemia Vera treatment, which I later had at Mayo, although I loved the "atmosphere" at Hopkins, the old buildings, the art in the corridors, the giant marble angel in one of the old buildings, the
cafeteria. I could walk better then, walked miles, although my feet did burn, but it was so exciting I forgot about the neuropathy in my feet. But I learned less there than at Mayo about PV. They (Hopkins) claimed to know nothing about Porphyria in the hematology dept. Porphyria, like PV, is usually treated by a hematologist. Are hematologists who don't know anything about Porphyria lazy?

[Dejibo]

you could always go see my naturopath. She will quickly help you spend your money. I have seen a dramatic increase in how I feel, and my sx, but wow my wallet is empty!

[Mariel]

Dejibo, I already did the path of supporting naturopath's children's college funds. And yes, I probably am "alive" now because of it. There were some helps. That is one reason now I have to be careful of money. There isn't a lot left. And I am old and still sick even though alive. I am actually fed up with living this way.

[aussiemom]

Speak to an attorney who specializes in Elder Law in your state. I used one to get my mom on Medicade without spending down her assets. It worked, and was legal.

[Mariel]

Thanks, Barb. A the moment I am not sure I will remain in this state. If I go to an independent living, it will probably be in California or Washington. I know, going into earthquake territory! But I don't know anyone anywhere else---I do know doctors, dentists, facilities, and have a few friends in WA and CA. I don't think I want to stay in such a dry climate as New Mexico, and brave the fire/smoke season next Spring, which probably will return as it is now yearly. The smoke is not something I can tolerate. I will get an Elderlaw attorney if I am relocated. Or I will get one here if I can't relocate. I just dread staying her into next Spring. I actually hope to pass on before going through the smoke menace again. I am so sensitive to it that it causes eye problems which last for months, even after the smoke is gone. I just need lots of money so I can go look around and be able to know what to do better.