Help me navigate Medicaid (Custodial Care) for working partner!
July 5, 2021 9:02 PM Subscribe
My partner is mid-40s and works full-time. He has reached the course in his disease where he needs more personal/custodial care than we can afford. We've met with lawyers (and got a second opinion!) but hoped to hear from folks who may have practically navigated this road in their own lives. Details inside...
Because these situations are often "It depends." Here are some specifics and what we are trying to figure out. We are based in New York.
1. We both work full-time and are fairly high-salaried (but not enough to bare the cost of the care he needs.) He does not qualify for Medicaid buy-in.
2. Partner cannot do most adls; he has assistive devices at work to continue to work. He's in an electric wheelchair. His disease is progressive and he will not improve.
3. No LTC insurance since he was diagnosed very young.
4. He only needs the custodial care/PCA support, he has private health care through work.
5. Both lawyers had more of a focus on either adult children with disabilities or older individuals. While they were able to answer questions about some of the mechanics, we still felt that the solutions suggested did not set him up for a long road ahead. We had some conflicting advice on how to move forward which didn't not instill confidence. (Both of these folks came highly recommended.)
6. Family assets are already set to be directed into a trust upon death of his single living parent since he is the sole beneficiary named in the will.
We are deeply concerned about the impact on our finances and of course, his retirement. (401k) We do not own an apartment (yet.) We understand there are also implications since we are married.
My questions
1. Does anyone have a recommendation for an estate/elder/disability/medicaid lawyer in NYC that DOES have experience with working age individuals without developmental disabilities who are trying to work and get this type of care while continuing to work?
2. If you've gone down this road, what were the things you wished you had asked or thought about before you put trusts into place and actually got on Medicaid? How did it impact the rest of your life?
3. For anyone who has opted to try to pay out of pocket. Did you see any positive tax benefits? Were you able to use the out-of-pocket costs of custodial care for medical care exemptions?
Again, folks who are post-retirement or adult children with disabilities are different use cases, and those situations won't be relevant to what we are dealing with! (But I hope you found a solution that worked for your friends and family!)
Since I know these situations can be tricky and tough, open to MeMail too!
Because these situations are often "It depends." Here are some specifics and what we are trying to figure out. We are based in New York.
1. We both work full-time and are fairly high-salaried (but not enough to bare the cost of the care he needs.) He does not qualify for Medicaid buy-in.
2. Partner cannot do most adls; he has assistive devices at work to continue to work. He's in an electric wheelchair. His disease is progressive and he will not improve.
3. No LTC insurance since he was diagnosed very young.
4. He only needs the custodial care/PCA support, he has private health care through work.
5. Both lawyers had more of a focus on either adult children with disabilities or older individuals. While they were able to answer questions about some of the mechanics, we still felt that the solutions suggested did not set him up for a long road ahead. We had some conflicting advice on how to move forward which didn't not instill confidence. (Both of these folks came highly recommended.)
6. Family assets are already set to be directed into a trust upon death of his single living parent since he is the sole beneficiary named in the will.
We are deeply concerned about the impact on our finances and of course, his retirement. (401k) We do not own an apartment (yet.) We understand there are also implications since we are married.
My questions
1. Does anyone have a recommendation for an estate/elder/disability/medicaid lawyer in NYC that DOES have experience with working age individuals without developmental disabilities who are trying to work and get this type of care while continuing to work?
2. If you've gone down this road, what were the things you wished you had asked or thought about before you put trusts into place and actually got on Medicaid? How did it impact the rest of your life?
3. For anyone who has opted to try to pay out of pocket. Did you see any positive tax benefits? Were you able to use the out-of-pocket costs of custodial care for medical care exemptions?
Again, folks who are post-retirement or adult children with disabilities are different use cases, and those situations won't be relevant to what we are dealing with! (But I hope you found a solution that worked for your friends and family!)
Since I know these situations can be tricky and tough, open to MeMail too!
Your spouse needs personal care assistance, not custodial care. "Custodial care" makes it sound like he is not of sound mind.
Look into the Medicaid Buy In. This will allow you access to medicaid coverage for his extensive care, while allowing him to continue working.
If he has a particular disease, I recommend finding some online groups with people in the same situation. These are invaluable!
posted by hydra77 at 9:46 PM on July 5, 2021 [1 favorite]
Look into the Medicaid Buy In. This will allow you access to medicaid coverage for his extensive care, while allowing him to continue working.
If he has a particular disease, I recommend finding some online groups with people in the same situation. These are invaluable!
posted by hydra77 at 9:46 PM on July 5, 2021 [1 favorite]
Response by poster: Thanks for the feedback! And to clarify - I used the term custodial care only because its what both our private insurers use for care that is not skilled (versus care that requires nursing/skilled care.) He is of sound mind, but physically unable to perform ADLs. But I get the nuance - and you are correct that he needs PCA care. (He has X hours each week right now, but its stretching us with life and other out-of-pocket costs.)
@hydra77 - Unfortunately we make too much money for Medicaid Buy-In in NYS.
We have our feelers out to the various specific disease groups as well as his large center that supports his care. He seems to be a rarity for sure.
posted by carmenghia at 10:22 PM on July 5, 2021 [1 favorite]
@hydra77 - Unfortunately we make too much money for Medicaid Buy-In in NYS.
We have our feelers out to the various specific disease groups as well as his large center that supports his care. He seems to be a rarity for sure.
posted by carmenghia at 10:22 PM on July 5, 2021 [1 favorite]
This may or may not be of help to you, but one of my friends whose 85 yr old mother recently went into full-time nursing home care through medicaid, and he says he wishes they had helped his mom put her assets into a trust in one of her kids' or grandkids' names a few years ago so that medicaid didn't end up claiming literally all of it, leaving his father penniless. If you put all marital assets into a trust in some non-spouse beneficiary's name, you could still have access to withdraw from it as needed (with your beneficiary's help, I'm guessing), and the government doesn't take *everything* of yours as well as his in order to pay for your partner's medicaid. This needs to be done >3 years prior to needing Medicaid, so I'm not sure whether it will be useful to you? But even at this late hour, you will likely be able to protect at least half your assets by making moves to put them in your name alone, i.e. separating martial property. Please check with a lawyer. This comment is super garbled and may not be even remotely legally accurate, but I wanted to convey to you the gist of what I understood from the conversation I had with my friend.
posted by MiraK at 5:19 AM on July 6, 2021 [1 favorite]
posted by MiraK at 5:19 AM on July 6, 2021 [1 favorite]
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In some states, such as California, the care your partner needs to work is called "In Home Supportive Services", and is paid for by Medicaid if you qualify. It may be paid for by your state Department of Rehabilitation if your partner is likely to lose his ability to work without this support.
If you are paying for this care yourself, and it is necessary for your spouse to have this care in order to continue working, this may be considered the expense of a disabled person working under federal and state tax law. You will have to look for the relevant IRS publication and your relevant state tax publication.
Your partner is in a relatively rare situation: Still able to work in a high-salaried position, yet unable to care for his/her own personal physical needs. I would suggest finding other people who might be in a similar situation and see if there is an organization helping them. Ex. MS patients, chronic fatigue patients, paralysis patients, etc. Persons who become disabled later in life, and can still work by using adaptive technology and personal care assistance are the persons similarly situated. If you find those folks through support organizations, you can ask for referrals to attorneys who represent the high-salaried working disabled who need more personal care than it is possible to afford on that high salary.
posted by KayQuestions at 9:38 PM on July 5, 2021 [1 favorite]