What real reason(s) does Medicare have to exclude spouses from caregiving?

Adult children as far as I know can live in the same home etc. and be eligible. Why can't a spouse? They are checked on the care they provide, why can't we?

I don't know about you, but my husband is terminal and needs a _lot_ of care. I don't work outside the home because I am needed here. I look at the list of services my son could be compensated for by Medicare, and I know I pretty much do *all* of them, and have for over a decade. For free, and while loosing my own access to Social Security Disability should I become disabled myself.

I am not looking for a freebie, I want to be treated equally.
The same checks to avoid abuse could be applied to us. I would be fine with that.

I know there is an option of disability that might cover me, but the payments are much lower, in line with someone who has never worked.
I do work.
I am just neither paid nor recognized for it. I am just expected to do it, and like most by far, I would never deny my spouse all the care I can possibly give.

I don't have to tell you that caregiving is a lot of work, and that you are on the clock 24/7.

I would like to open a discussion on how to challenge what I see as a discriminatory rule.

I realize that people will immediately start talking about childcare, and that parents aren't compensated to care for their infants. children grow out of this intensive type of caregiving in a relatively short amount of time. They will over time become more able to do things independently.

Caregiving for disabled adults can span decades and is often without the expectation of functional improvement. That is why they are on Medicare in the first place.

I know I am definitely not the only spouse going without the same financial and social securities and compensations as anyone else would have if they weren't married to the person they are caring for, because we would neither turn our spouse away, nor pretend our marriage has failed.
I feel the government is counting and banking on us providing the same care -they would pay absolutely anyone else for- for free because we are both the first people asked for help, and the least likely to ever say no regardless.

What are your opinions, and how would we go about challenging this?
Where do we start?



Find Care & Housing
Alexx, you bring up just one of the many problems. Where are all those Villages we once thought the aging populace would lead to, where one person can drive and another cannot drive but can cook, and so on and so on. I guess I am dreaming. As far as health care and any hope in my lifetime (I am 77 and my bro 85) I guess I have given up. I am glad you are still looking like you are up for the challenge. I will try to muster some strength. You inspire me.
Helpful Answer (0)
Reply to AlvaDeer

Igloo, Michigan is way different than most states.

When I spoke with the ombudsman, I found out that MI Choice waivers mean "my choice" their words not mine. Exes mom gets 60 hours currently and based on her situation, the state should have provided 24/7 and daily skilled care in the home. There are no limits in Michigan on what they provide for a person to stay in their homes.

OP is in the region next to mine so if she is using the 3rd party administrator in the area rather than the area on aging, she is most likely being lied to about what can be provided and they downplay needs. Also, if a child is paid by self determination the client determines the rate which needs to be reasonable ($20 or less). The training is 1st aid and cpr dvd you say you watched. They will pay a nurse to do meds, not family.
Helpful Answer (0)
Reply to anonymous295238
igloo572 Sep 23, 2019
Tacy, oh my that’s generous .......well between this and the ability to do Lady Bird deed anytime, is this level of spending supportable for MI budget???
My state had to call a special session to deal with a teeny tiny sales tax increase in order to get funding needed to cover the reimbursement costs for current LTC NH to get to end of last fiscal year & do a slight increase to pay for incoming year. It was a beast to get passed.

on the recovery only if 55+, I think the rationale is that most on Medicaid under 55 are there for a limited period of time - like an expectant mom or someone lost their job - or are kids on Medicaid CHIP. It’s mainly healthy folks for couple of years.
Over 55, more likely long term chronic diseases or end of life care needing 24/7 & much more costly.
See 2 more replies
If you want to be “paid” to be a wife, you should be a mistress.
Or have a serious in your favor prenup done & marry $.
I’m not trying to be all sassy, but the reality is that by & large caregiving in the US is done by family and done for free out of a sense of familial duty with no compensation.

MediCARE does not pay family. MediCARE is insurance & is about paying for hospitalization, physician costs, fees paid to other health care providers and paying towards prescription drug costs. You would need to be some sort of licensed/ regulated health care provider or be employed by one, to be paid as a vendor participating in Medicare and accepting Medicare negotiated rates.

Medicaid can, but your state will need to do waivers from your states Medicaid budget for IHHS (in home health support or services) programs and have administration & training set up for IHHS. Based on what others have posted on AC, most IHHS done by a living in the home child, (so living rent free), who does not have other full time employment & they undergo some sort of health & safety training course & paid slightly above minimum wage for 12-28/30 hrs of care per week. The elder will have a needs assessment to determine the # of hours. It cannot go over a set amount of hours, like be in the 30/34+ hr range, as the cost effectiveness or cost benefit is not there if over 30/34 hrs a week. Seems to be abt $10 hr & 20 hrs a week average and paid by state so all reported taxable income, so maybe $140 actually paid. Some states require part of the elders income paid to state to offset costs.

AZ & CA have established IHHS.

But What states are doing now is moving to PACE - Programs for All Inclusive Care for Elders and away from any 1-on-1 programs. If your area has PACE, really think to have your hubs evaluated for it. PACE will pick them up and take them to a PACE center 2-4 days a week for 6-8 hr day, and includes meals, activities, screenings, transportation. All medical care gets coordinated thru the center. If they need a check in over the weekend, a PACE employee can do a 3-4 hr visit over the weekend. If they get beyond what PACE can provide, they will have the health chart to show a higher level of care is needed. Which enables them to transition to a NH or MC. If PaCE is happening in your area, hubs may need to be evaluated for it as a first step to get into any state supported program. All nonPACE time is on family to do. But the PACE enrollee will have income & can pay for a home health company to provide for care.

Most PACE is set up that they need to be a “dual” which means they are on both Medicare & Medicaid. It would be community based Medicaid that they go onto. Although some PACE centers have had the Medicaid requirement successfully challenged by participants.
Helpful Answer (2)
Reply to igloo572

Medicare does not pay for in home caregiving. They cover in home skilled nursing for limited visits.
Helpful Answer (1)
Reply to UsedupDIL

I am in Michigan and you are talking Medicaid, not Medicare. If your son becomes POA, he also cannot be paid.

It has to do with community spouse exemptions for qualifications, you cannot benefit financially from Medicaid due to personal gain rules.

I talked to the LTC omsbudsman office Friday. The way Michigan law works is there is no limit to how many hours a person can receive for in home care and adequate services.

If you want extra money, get a job outside the home during caregiving hours. The money would not count against him due to the rules.

The practice of not paying spouses is not discriminatory. In my opinion limiting recovery to those 55 and older is though.
Helpful Answer (6)
Reply to anonymous295238

Ask a Question

Subscribe to
Our Newsletter