Medicare and caregiving

Ed1937

I thought someone else might have started a thread on this, but I don't see one. Evidently Medicare is ready to test the waters on finally helping. https://www.npr.org/sections/shots-health-news/2024/07/04/nx-s1-5026964/caregivers-dementia-alzheimers-medicare-support

M1

Interesting and thanks for posting Ed. Maybe a step in the right direction, but it sounds long on planning and short on hands-on details. Another layer of bureaucracy is not gonna be much help IMHO. I'd love to be pleasantly surprised.

northernlady

https://alzconnected.org/discussion/comment/214804#Comment_214804

Took the words right out of my mouth. It's not like there isn't enough first hand wisdom in the experience of caregivers. We are here. We can tell them what works what doesn't.

Fingerscrossed this works and works soon.

Ed1937

M1, I fully agree. But at least they're talking about it. That's always the first step.

ImMaggieMae

This sounds kind of like hospice, but without the expectation that the PWD will pass within 6 months. This sounds like a wonderful program for caregivers who desperately need support.

Mint

I hope this works out.

JDancer

My spouse is currently on a Medicare Advantage plan, so we're not eligible. I'd love to hear from people who apply.

M1

From the article Ed posted, what they are starting is an eight year (!) Pilot program to see if having an assigned care coordinator helps. So it won't be available in all areas, and real help still sounds like it's a long way off.

ButterflyWings

Thanks for posting this, Ed. I think there may have been some commentary on this here many months ago, when it was first being considered. This is going to be long LOL😅

I do think it is a step in the right direction, as it could possibly replicate exactly what most of us here are saying and doing day in and day out, year in and year out as we make it work even without policies or resources that really "help". Like many others here, DH already has the expert Care Coordinator serving in this role and doing a pretty darn good job. Me! Over the years, I have researched and cobbled together exactly the structure and various resources that DH needs which includes respite supports and other options for spelling me periodically. And I deliver the personal care aspect myself, 24/7, willingly and very well. We need not minimize our considerable accomplishments and contributions even though the system does. (I think this article quantifies it as all that unpaid work adds up to 18 billion hours a year. (At $15/an hour minimum wage, that equals $270 BILLION U.S. dollars in unpaid care work, so they know the value. Huge.)

Pros and Cons of the Pilot

To have to educate someone else to try and be the substitute Care Coordinator for DH instead of me, while they also juggle other cases is typically nonsensical for this system. So he would get someone part time to either learn from, ignore, or challenge what his spouse caregiver has already learned and built by the skin of my teeth — and with the support and guidance from others here in this forum who have done/are doing the same. The option they are envisioning is nice for those who don't want to do it themselves, or who can't for some reason. But the program proposed shouldn't be seen as an automatic miracle missing link just because Caregivers are neglected for so long until we burn out and throw in the towel before our LOs disease takes two.

A Wild Idea*

Here is my contribution to their pilot plan: (Will they solicit, and prioritize, such expert feedback from family caregivers, especially Spouse/Partners who are there 24/7 for years? I'd be surprised, but that would be huge!). I'm guessing not. But here is my input to their plan anyway: The support menu should start earlier in the caregiving process and include the option to respect the knowledge, expertise, capacity, and ability that is already in the home with tangible compensation. I don't want or need to hand over care to someone else — I just need to be compensated for the same services they would pay someone else. Caregivers should not be bypassed in this way.

A truly transformed system that "helps caregivers" would recognize my/our expertise, the numerous trainings I have completed to certify for his care, and my proven capability to handle his escalating needs over the last x years. And would pay me just as others are able to be paid (albeit minimum wage) rather than forcing me/us to "spend down" to below poverty levels in order to qualify for extraordinarily overpriced institutional placement which I don't want nor need anyway. DH is happy at home and I am happy too. Just forced to be on such a shoestring that honestly is the major stressor on this journey.

*The real "aha" would be if the refusal to pay spouse caregivers was eliminated. We could then choose to do as much, or as little, of the care partnership work required (at home or in MC), serving as a respected partner/lead as opposed to competition with the "experts" in the system, and we would not have to bankrupt ourselves financially, physically, or emotionally to do so. Stop victimizing and discriminating against dementia spouses. What is the problem with paying us 40 hrs/weekly at the going rate, knowing we serve the remaining 128 hours for free?

If this option were part of the pilot, the cost savings to the system and quality of life results for both PWDs and Caregivers could be demonstrated in 1-2 years I would bet, and would be stunning in terms of the positive outcomes. We know this. "They" probably do too. But what would that do to the Senior Svcs cash cow income stream for big med and big pharma? 🤔

harshedbuzz

What exactly are they providing that a website or Area Agency on Aging isn't/can't?

What does this mean— " They will also help coordinate doctors visits and identify some adult day care or in-home care for the patient for up to a few hours a week, to lighten the caregiver's load."

Coordinate doctor's visits? How is that a help? I can call the office or reach out on the portal and pick a time that works for me already.

Identify respite options? What many people need is funding to make these available to folks who otherwise can't afford it.

HB

M1

exactly HB. Don’t see any real help here.

Iris L.

This is my take: there is a class of college educated professionals who earn middle class incomes to provide services for/to interact with/to manage vulnerable populations. This includes PWDs and other frail elderly, the disabled, the homeless, migrants, and those in the justice system. It is a never-ending and growing system of intermediary "care" and control.

Iris

fmb

https://alzconnected.org/discussion/comment/214858#Comment_214858

"Control" being the operative word.

PeggyLouGA

Thank you for this post. I just looked at the link to learn more and it sounds promising. These things take time, trial and error steps and lots of measuring BUT atleast someone is doing something to get the ball rolling. If it helps me, that would be awesome, but if it helps some others down the road, that would be awesome too.

JC5

thank you for posting. We all need Medicare to step up and help. I pray it happens! I feel like I’m swimming upstream and going nowhere.

M1

What is really missing is the income stream to fund real care. If we want services, we're going to have to pony up the taxes to pay for them. I'm in…..but how do we convince everyone else?

RayeMc

It seems to me that it will not be of help (unless funds are provided) for current caregivers who have had to cobble together resources they need. However, in the future it could be quite helpful to those just starting down this awful journey and short circuit their trial and error attempts at obtaining what they need to better see to their loved ones. Dementia is not going away so any help that future caregivers can receive has my vote!!

brs

I think a resource coordinator for the family caregiver is needed, making it easier for us to obtain the necessary local community info/in home help needed. Also, why is Medicare Advantage placed as a " disadvantage " to the patient in this program ?

​fesk

I agree - it's a start. Hopefully, something meaningful/helpful will come of it.

I have to say though, this part - "…identify some adult day care or in-home care for the patient for up to a few hours a week, to lighten the caregiver's load" - a few hours? Sigh.

Jo C.

Some years ago, my mother and step-dad had Medicare signed over to another insurance program that was primarily for Medicare patients.. A couple of years later, the new insurance group, began a new program wherein they had every enrolled patient who fit criteria for age or condition, assigned a specific Social Worker that was "theirs." That SW made home visits, weekly or every other week, NOT telephone management. It was awesome! The SW hit every single issue that could possibly be and then put interventions and assistance in place. The SW anticipated and prevented problem issues. Even when things were going well, the SW made a home visit about once a month . If there were issues or potential for problems, the SW could visit far more often.

It worked so well, it was like heaven-sent. Diapers? Ordered and Done. Dr's appts? Done. Special foods, meds, etc.., etc. Done. No red tape, the family did not have to struggle; the SW did it all and then monitored it. It was truly so good.

However; it lasted only for nearly two years and then went away. Their data did indicate the SW program kept pt's out of the hospital and had kept the pt's in far better condition - however; the program was not kept.

For the time it was up and running, it was amazing and I know from speaking to other individuals in the same program, they felt the same way. However; new insurance President came into play and POOF!!! Gone. Truly great and worked so well while it lasted. Aw well . . . .

J.

sandwichone123

It sounds like a great idea to me. Most family caregivers don't have the support we have here, and having someone 24/7 to call for coaching that can also obtain prescription orders? Sure it's not heaven on earth, and it's not replacing or replicating the family caregiver, but how many times have we had someone on these boards that needed a prescription change and the soonest they could get an appointment is in two months? And that's the folks that find this board at all! Many are still trying to explain and reason in Stage 6.

Kibbee

Most of us have already figured out how to coordinate and manage care for our PWDs. What we really need is some hands-on help in our homes, and the ability to have occasional respite breaks. We have a caregiver shortage so how about the government funding a program to educate and train people to become certified dementia caregivers? And how about our politicians work to drive policy change so that Medicare and other payors will begin to cover the cost for families of PWDs to hire from this cadre of newly certified dementia caregivers?

Participants in the educational program would develop skills leading to gainful and self-supporting employment, which in turn would swell the tax base. Families of PWDs would be able to obtain needed hands-on help and respite breaks. And maybe, with this extra support, families could care for PWDs at home longer, thereby reducing the high cost to the government for Medicaid covered long term care.

ImMaggieMae

@ButterflyWings said:

“A Wild Idea*

Here is my contribution to their pilot plan: (Will they solicit, and prioritize, such expert feedback from family caregivers, especially Spouse/Partners who are there 24/7 for years? I'd be surprised, but that would be huge!). I'm guessing not. But here is my input to their plan anyway: The support menu should start earlier in the caregiving process and include the option to respect the knowledge, expertise, capacity, and ability that is already in the home with tangible compensation. I don't want or need to hand over care to someone else — I just need to be compensated for the same services they would pay someone else. Caregivers should not be bypassed in this way. 

A truly transformed system that "helps caregivers" would recognize my/our expertise, the numerous trainings I have completed to certify for his care, and my proven capability to handle his escalating needs over the last x years. And would pay me just as others are able to be paid (albeit minimum wage) rather than forcing me/us to "spend down" to below poverty levels in order to qualify for extraordinarily overpriced institutional placement which I don't want nor need anyway. DH is happy at home and I am happy too. Just forced to be on such a shoestring that honestly is the major stressor on this journey.”

Exactly! And if 40 hours per week compensation was provided to caregivers, that money could be put toward hours of respite care in the home to give us a break even for doing things in the home without having to look over our shoulders constantly and some help with the heavy lifting that comes into play in later stages. Respite care because of the minimum number of hours usually required, can be outrageously expensive, even more than institutional placement which we don’t want or need. I will probably need help getting my husband in and out of bed at some point.

RayeMc

https://alzconnected.org/discussion/comment/214894#Comment_214894

My guess is that since Medicare Advantage is provided via private insurance companies, they are not willing to add this additional coverage, or at least not initially. When their members start leaving in droves to return to traditional Medicare, they'll make changes.