How to get medicaid funded in-home care in USA?

From where I'm sitting over here in the cheap seats (haha) it seems like almost everyone on this forum is in the UK and ohh my gosh! You all are SO blessed! I'd have never imagined there existed such a thing as an "incontinent nurse" who comes to the home at all hours of the day and night WOW, sounds like a dream! We pay out of pocket now for in-home nurse's aides. Every road we've followed to attain in-home care through medicaid or medicare has been a dead-end. Is there anyone here who has ANY idea how to overcome these things in the good ol' USA where healthcare is outrageously EXPENSIVE!!!!!

15 Replies

  • There is a US-based forum for psp, and I do recommend you check that out. I tried that one but had a glitch signing up and ended up here, so don't have the link for you, but it's not hard to find. Someone there might have what you are looking for. We are in the US and pay privately for in-home care beyond some hours of an aide subsidized by the VA. It is expensive. Sorry not to have better advice. Good luck.

  • GMD, Cheap seats...Hee hee hee. I'm sitting right next to you! Like EC, we pay out of pocket here in the good old US of A! Hard to get Medicare to pick up the bill for anything these days. However, I did hear that if you get yourself certified as a home health aide that you can get paid for taking care of them. The trick is for the patient to be on disability. I have not tried as my husband is on social security and listed as retired officially. Bummer huh? But might be worth checking out to see. You can claim the $$$ spent on their care as a medical deduction on your tax return. Long term care insurance is gaining momentum as baby boomers age because the cost of care (at home) is going up. If your father goes into a nursing home Medicare will pay after you expire all your assets unless you put your assets in a legal trust account. They certainly do not make it easy for you but then again our UK friends in the front row seem to have to deal with a myriad of red tape as well.

    Good luck and keep us posted please if you manage to get anything covered!

    Best JGC

  • Hi and thank you! One question, what's a legal trust account and what would it accomplish? I don't have a clue!

  • GMD. A Legal trust account is written by a lawyer. It protects your assets so Medicare cannot touch them. Usually you have to expire all your assets before medicare kicks in. Some states now have waiting limits. They caught on to the act that

  • How old is your dad....Get on disability with social Area Agency on should be a federally funded state based thing . Go to Department of Human Services. I don't know if any of this will help on in home care...However my doctor did ask me if I needed any help at home yet....I totally forgot about this....and it was just 2 weeks ago I saw her.....anyway I told her no, but that she asked, means she had information about in home your doctor...make sure they can help you out Mine is an internal meds doctor or soemthing they deal with seniors pretty much exclusively. Also area agency on Parkinsons support group may have info If you can get a hold of soem sort of group for Parkinsons they may have info that could help you....someone referred me to them about getting a wheelchair for B.


  • Oh, the Alzheimer's advocacy org said they'd help us, that psp is under their umbrella. I haven't followed up yet, but the organization is national, so may have local resources for you. Good luck. Ec

  • Wow! I didn't know that. Good to know. PSP has many characteristics of Alzheimers, ALS, and PD, all rolled into one. Since most of the drug studies are using PSP patients as guinea pigs to help find a cure to Alzheimers, then they should be supporting the poor PSP patient.


  • morning!

    i agree wholeheatedly with you, although the care and help is means tested and we have shelled out over £18,000 for lifts and adaptions to our home the health component of care is free at access. again although free at access, most of us have worked for over forty years and our national insurance scheme which we pay into all our working lives is not cheap, but yes we get a better deal. i think sometimes we are so worn down we find it hard to look at any aspect of this disease positively!!!!!!!

    lots of love julie x rog having a lie in!

  • Agreeing with Julie here. Although we are lucky in UK in many respects, it is a common mistake to think that NHS services are 'free'. We all pay in to the system so it's just like any other insurance scheme really, and it's hugely expensive for the nation. That's why the excellent CHC is so hard to get and all care that is not a 'primary health need' is means tested.

    By the way, we haven't seen sight nor sound of the incontinence nurse since her original visit after D was referred about nine months ago! I'm glad to hear they are being helpful to some though.


  • Free homecare? Somebody has to pay! Nothing is FREE!

  • Put your congressman or senator to work for you... get them to lobby on your behalf. I've learned that No doesn't mean No... it just takes a while longer.

  • Hi my Aunt has PSP we are here in Reno, NV maybe Medicare is different where you are but I have got them to pay for everything bed, electric scooters diapers, even the ramp for the wheel chair if you ask your doc for a prescription and they write one for what ever you want medicare will most likely pay for it . As long a prescription is written.



  • can you file for medicaid or medicare they pay for me for 33 hours a week even though im twenty for hours, get her a social worker threw health and human services she gets paid to be a bitch and can help with so many things there is not one thing except diaper rash cream we pay for

    hugs kryste

  • Agree with kryste. Medicare paid for everything when dr wrote a script. And if your loved one is mostly home bound that will bring in home health care with dr script ---nurse, pt, OT, speech and home health aide. Have not heard of incontinence nurse tho. That would come from a caregiver which is not covered by Medicare

  • THank you all for the replies! Very interesting. Daddy is under his wife's health insurance at her job and he's also on medicare, both of which have helped with equipment and supplies. It's my dad's wife who is paying out of pocket for carers now and she works full time, so there are many hours that carers are being paid. It's more the carer funding we could use help with. And Daddy is 81 so he's on social security, not disability. My dad's wife is the one making all decisions and who would benefit from funding help, but they own the home. So I guess funding is as good as it's going to get. Even though it sounds expensive throughout the working youthful years of a person's life, I like how they/yall do it in the UK, because getting old is hard, having PSP is even harder and senior citizens shouldn't have to also go totally broke to qualify for the help they need. My dear Daddy worked very hard all his life and paid into the system, social security, taxes, unemployment. NOW is the first time in his life he's needed ongoing help, but there's very little aid for help to be found. It's just frustrating. Thanks for all your suggestions though of possibilities which I shall look into more closely when time allows. Thank you and have a great day.

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