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Wife with Young Onset Parkinson's needs more help. I still have 10+ years of full time work before I can retire and be more "available." I do not want our teenage daughter to be picking up the "caregiving slack" when I'm at work or otherwise out. Medicaid sounds good from the perspective of getting help, but the impoverishment requirements would kill my retirement funds and our daughter's college fund. I also assume there is a sizeable degree of recordkeeping required for tracking eligible services and expenses. I'm in the early stages of working with an Eldercare Atty. Any insights on this process and it's trappings would be great.

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Agree with much of what others have said. Each state has a slightly different "test" for qualifying but it is income/asset based (and the income thresholds are very low, like $2.5K total. Joint bank accounts may be treated as total income for the applicant too. The house is different. And there are spousal impoverishment rules. But all to say, the income/asset level to qualify is low AND one also has to meet a state-determined "level of care" need to qualify. Just because one has a specific diagnosis that alone does not translated into qualifying. Meeting the "level of care" test (again is state-specific) and largely based on some formula of ability or the lack thereof to perform ALDs or IADLs.

If qualified, Medicaid will provide for medical care and maybe long term care in a nursing facility. Some states also have waivers to allow their state Medicaid program to pay for assistive living (most have long wait lists for this). And "in theory" Medicaid also pays for aides to help at home but the wait list in many states to actually get an in-home aide is very long (3 or 5 years) as there are so few people to do this work and there is a huge demand for this help.

Yes, work with your elder care lawyer and area agency on aging as there may be other local programs you might have access to. Sadly, paying out of pocket for much of this -- unless you have separate long term care insurance that covers home health aides -- will be the likely outcome.

In addition to an elderly care lawyer, best to get with an estate attorney as well to plan that out. Depending on your circumstances, there are options to consider such as a special needs trust for your wife (what happens to her if something happens to you, and can you protect any assets from Medicaid taking them? Your elder care lawyer can help with that). Perhaps putting some assets into an irrevocable trust for your daughter (estate attorney). Perhaps putting assets (home, savings, investments, etc.) into a revocable trust with you and another Trustee to manage if something happens to you (estate attorney). There are a host of these things to consider from an estate, tax and asset protection standpoint as well as what the elder care lawyer might be able to do from the Medicaid standpoint.

Keep in mind that Medicaid has a 5-year look back provision, so best to consider some of these things well in advance. Your elderly care lawyer may also be able to handle the estate/tax stuff, but many work with estate/tax planning lawyers as well.
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Reply to Sohenc
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If you are talking to those who depend on it, then whether it is worth the hassle or not is moot as you say they depend on it so don't have a choice. Looking at something that would kill your retirement fund or your daughter's college fund sounds rather drastic especially for such a "young" family - you will need those funds in ten years (and your daughter's when she goes to college). How much care is obviously going to increase as your wife's parkinson's gets worse, but certainly for the moment some belt tightening (if possible) to enable you to employ a carer or whatever your wife needs, sounds to me better financially to enable you to continue as long as possible in work etc. Having said which starting to keep a record of expenditure now so it can be looked back on and you can avoid as much questioning in the future could well be a good idea - not cent for cent reckoning but monthly amounts for services, general shopping, mortgage, any large items, and anything you do spend on care, I can see may come in handy in the future. if looking for a carer for your wife then consider her actual needs - is it someone to be in the house to just keep an eye on her - hire a cleaner who can help with some of the chores whilst watching over your wife. Is it just help getting up, washed and dressed if so get someone for a few hours in the morning. Can you wife use a microwave such that you can leave ready meals for her to get her own lunch, and cartonned drinks if this would be easier for her. Change the type of care as care needs change. Kudos for you for thinking of the future now, and best wishes for finding the solution that works best for your family.
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Reply to TaylorUK
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It’s long and arduous and if you are working not sure you’ll benefit. Forget the college for your child… it won’t happen. They will say if u have funds for college you have funds to pay for healthcare. We are losing my husbands entire pension and his social security. Not sure how I’m gonna manage for ME. You keep your home and a car … that’s it
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Reply to Katefalc
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Bridger46164 Oct 23, 2021
Consult an elder care attorney. You should not be impoverished as the community spouse.
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Have you looked at the income level for two people - it's pretty low. You can look at Medicaid charts for your state. If you're working you may not even qualify for any kind of at home care. Plus her own income - assuming she is on disability social security - is counted. If you do qualify, it is very minimal for the number of hours she will get. If you're trying to get her in a nursing home on Medicaid, The elder care attorney should be able to tell you, pretty much at a glance, what income would be counted for her care and explain at home services versus facility care.
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Reply to my2cents
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Replying to how Dad can keep his SS and pension. Medicaid works differently with married couples. The Community spouse has to be given enough to live on. Moms SS and pension are hers, Dads SS and pension are his. Medicaid cannot use his SS for her care. Actually, if he has problems paying bills, Dad can get partial or all of Moms. Weird, I know. In Daughter's post, it must have been found that Dad had no problem living off what he receives in SS and pension so Moms SS went to offset her care.
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Reply to JoAnn29
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Beats living under a freeway overpass.- Seriously, we do not have the kind of old age care that some European countries have (and pay taxes to cover). So before the ordinary American taxpayer is asked to pay for your wife's care, should you not pay out of your own pocket? Medicaid looks at combined assets but gives consideration to the community spouse. Of course you can decide to pay out of pocket and not apply for Medicaid, but then how long would the college fund last?
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Reply to rovana
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There is such a professional as a Medicaid Planner. See if you can find one near you -- it may be worth your time and money.
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Reply to Geaton777
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You may want to check with the Area Agency on Aging in your area to see if they also cover "Disability". In my state, there are several programs provided at a need level with little discussion of your resources, like Adult Day Care and in-home housekeeping, meals-on-wheels, and personal care services. They are limited in scope but every little bit can help. You may also find some help from local churches, even if you are not a member; talk with the pastors/ministers.
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Reply to TNtechie
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There are many support groups for Parkinson's and Young Onset Parkinson's Disease folks. Contact the various organizations for advice. Get her depression treated. Can you get her helped with some PT? I would also park her front of a screen and join some Zoom support meetings. Even if she doesn't say a word for several meetings I would guess she will get some sense of social interaction. And don't forget about the needs of your child dealing with a disabled parent. Get some support for her too.
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Reply to vegaslady
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My family’s experience with Medicaid was positive. My mother was in NH care, burned through a LTC policy and what my dad could do private pay. They were both receiving SS, hers went to the NH, he kept his, along with all of his retirement, and all their savings (not a huge amount) Dad had to sell one car and keep one car. He kept very basic records on what her allowable funds per month were spent on. I can’t speak for Medicaid usage in a home setting and how that may differ. It wasn’t a nightmare for us. I’m glad you’re seeking elder care attorney help
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Reply to Daughterof1930
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Namekalb Oct 19, 2021
Assuming your parents stayed married, how was it that Medicaid did not count your father's retirement funds and their savings? Normally, they count all assets of a married couple. If he was retired when your Mom went on Medicaid, maybe the retirement funds and savings were used as Dad's "income," which Medicaid would not count since he was not applying (for married couple they only count the "income" of the applicant, yet individual and joint "assets" are counted).
For me, because I'm still working for several more years, my assets are in retirement accounts that Medicaid views as jointly held with my wife, and therefore need to be spent before my wife can be enrolled. Our daughter's college fund is also counted, because we could cash it out if we wanted to.
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Medicaid is for the poor and low income. All assets have to be spent before Medicaid for "in home" or paying for a facility can be applied for. Good thing ur working with an elder lawyer. He maybe able to secure your daughters college fund. Medicaid allows for a splitting of assets. Wife's split going towards her care either going for aides in the home or placing her in a skilled nursing facility. When her split is spent down, then Medicaid can be applied for. If you were retired and on Social Security, this would be pretty easy, but not sure how this will go with you still working. But thats why you have a lawyer.
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Reply to JoAnn29
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Namekalb Oct 19, 2021
Thanks for the feedback JoAnn. I'm not so sure about the "splitting of assets." From what I've learned, as a married couple, whenever my wife applies, Medicaid looks at our combined assets (anything assessible like IRAs or the College Savings Fund). I'm allowed to keep $130K and my wife can keep $2K. We can keep our home and one car. So even if my wife spends down her assets before applying, they still count mine and the college fund. We're not rich, but have about 30 years of working and diligently saving behind us, so very hard to relinquish our small nest egg.
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Medicaid doesn't play into our lives "when it's worth it" but when it is NECESSARY and there are no other options for our care or the care of those we love. Hopefully this attorney will help you NOW to separate out finances in any legal way this can be done, and certainly protection of your daughter's college fund is a necessity. The cost in care will be enormous. It will wipe out your finances any way you look at it unless you are indeed quite wealthy, especially since this is early onset as you said, and there will be many years of treatment and care needed. I am thankful you have an eldercare attny and hope it is an excellent one, as this is the requirement, and thankfully you are doing this early as you can. I hope you have good insurance, as you are still working; WITH that good insurance it may be many years before Medicaid is even a question
. I hope there are others here who have gone through the process who will have more input of what they have gone through. Consider seeking a support group for families and spouses of people suffering chronic long term disease with increasing needs as they are going through the same things you are. Try for Facebook Groups or any other group involving Parkinson's. The amount of information you can get from such groups is enormous. Wishing you good luck. Wish I had more information you could USE, but want to assure you you are doing the right steps to get help.
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Reply to AlvaDeer
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Namekalb Oct 19, 2021
Alva, It's been 8 years since my wife was diagnosed, so we've been living with the steady decline for a while. It's getting to the point where the need for in home care is a necessity, but my wife is in denial. My point about "worth it" was meant to say, can she get the care she needs while I keep bringing in income and someday retire? Barring an accident or illness, I could live another 40 years, and my daughter should finish High School by 2027. Impoverishing all of us, depriving my daughter of her higher education, and making our family dependent on the social safety net for the rest of my life, doesn't seem like a good trade off in order for my wife to get the help she needs now.
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