Financial Support for Home Care

I’ve been thinking a lot lately about respite care.  I was asked to participate on a committee to look at creating a voucher program in Virginia for caregivers to obtain a small amount of financial assistance so they could afford respite care. I think the idea is wonderful.  So many of us need a break but don’t have close friends or relatives who can provide relief or don’t have insurance that will pay for it.  Unfortunately, funding will be limited and the need is great so many people will still have needs that will go unmet.

I was a consultant on the Committee, essentially one of the voices of those in need who could offer comment about the direction the plans were going.  As I listened to the experts discuss which resources currently available would be the best to contact as sponsors or how would those who need assistance hear about it, I realized just how lost most of us are in trying to figure out where to go and what to do.

I think of myself as being pretty knowledgeable about healthcare and medical systems.  I have a nursing background, though it’s been years since I practiced, and I work in a hospital so I’m familiar with how healthcare works.  However, I’m totally lost when it comes to knowing what to do about getting financial assistance or respite care.

When Lynn first started having difficulty getting around, we decided it was time to apply for Social Security Disability.  That was a 12-month struggle of filling out forms, getting rejected, researching the rejection reason, applying again, getting rejected again, appealing again, etc. until we could go before a real person.  Once we were able to see a judge, all he did was ask when Lynn got as bad as he was and approved the disability. (by the way, I did this myself without a lawyer so it can be done but it takes a lot of time to do it).

Naive me, I though, “great, he has disability now.  Finally, we will get some help.”  Wrong..though not totally.  He does get a monthly income now, much less than he used to earn when he was working but it certainly helps.  I thought; however, that he would also get medical care immediately.  I had no idea there was a two-year waiting period before he would be eligible for coverage under Medicare.  We were fortunate that I had insurance and had him on my policy.  What does someone who is totally disabled and unable to do any work do for two years without insurance?  Doesn’t the government realize that the cost of self-insurance is outrageous if you have a disability IF, and that’s a big IF, you can even get coverage!  Most people would be denied if they had to start from scratch in getting insurance and if you HAD insurance but lost your job and had to use COBRA to keep it, many people could not afford that cost either. It just doesn’t make sense to me that Medicare has a waiting period once disability is approved.

So we waited somewhat impatiently for Lynn to be approved for Medicare.  Again, naive me, I think, “great, now I can get some home care assistance.”  Wrong again.  Medicare Part A, which is free, only covers inpatient care.  Medicare Part B, cost a monthly premium which is higher than the cost I pay if I keep Lynn on my insurance at work.  So having Medicare does us absolutely no good unless he gets hospitalized. So I’m back at square one, my insurance doesnt’ provide for home care assistance on an ongoing basis so if I want someone to care for Lynn while I go into work, I have to pay for it myself, and from what I can tell, “it ain’t cheap.”

Someone told me I needed to apply for Medicaid for him.  Apparently there is some type of waiver program that provides financial assistance to caregivers who take care of family members at home so that the person does not have to be hospitalized.  So now I’m trying to find out about this waiver program with Medicaid; however, the best I can tell, Lynn doesn’t qualify. I may not be reading this right but it seems like the person has to have a monthly income less than $2000/month, which would qualify him but the person also cannot have any savings greater than $2000 which disqualifies us.  When Lynn lost his job, he had a retirement savings account that is more than $2000 plus all our assets are in joint accounts.  While we don’t have much, we usually do have more than $2000 on hand so that we can handle emergency  repairs and purchases.  These days if a car breaks down, or you need a new well (we spent $5000 putting one of those in) or new appliances, or any number of things, you need to have some money readily available.  Plus if I were to be out of work for an extended time, we would need some money to fall back on.  We just can’t afford to get “poor enough” to qualify for assistance.

It’s basically a catch-22, if you’re already poor, you can qualify for assistance, but if you’re not totally poor and only need help to supplement, rather than totally support your existence, there is nothing available.  Financial concerns is one of the main reasons I’m hesitate to hire someone to stay with Lynn.  I’m sure anyone who can provide the type of care he would need would charge around $20/hour.  There is no way I could afford paying someone 10 hours a day (I work an 8 hour day plus I have an hour travel to and from work) for five days!  That’s $1000/week or $4000/month.  I could probably get someone for half that amount if all they did was served as a companion but that would mean I would have to do all his physical care before or after going to work and have to keep an indwelling catheter in him which would make him prone to urinary track infections and increase his risk of hospitalization.

So until further notice, I’ll keep trying to manage a full-time job at home with help from family, friends, and God who always seems to meet our needs, one day at a time.  Anyone got any better ideas?

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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6 Responses to Financial Support for Home Care

  1. Nancy says:

    I’m right there with you. If you worked at all in your life and have like you said a small back up or insurance there is no help. Our van just got totaled when a deer hit it. We had to buy a different vehicle. Without our small savings we wouldn’t of been able to get another one. I don’t see why the government can’t see that we have worked our butts off since we were teenagers on a farm and continue to work out, but those that didn’t have the desire to work and get ahead in life gets things handed to them by the government. It doesn’t take a genious to figure that out!!

  2. Bina says:

    Donna, I helped my sister get approved for our states Independence Waiver program. This program has been invaluable to us….it’s how she has an aide as well as how her bathroom is being modified for her safety. She is single without any assets so it was easier for her to be approved but it still was not easy, that’s for sure. It’s definitely worth doing though. I can’t imagine what would happen without her aide.

  3. I am hoping that someday, someone up in the government can take notice and pass a bill helping those in your stead when it comes to issues like this.

  4. New to your blog and glad to find it, only so I can feel less alone!
    We have my husband on MediCal (California’s Medicaid). The amount of money you can have in savings is stupid. Imagine… in CA $2K won’t even pay our rent for one month. So if I lose my job, we have nothing. But for us it was worth it to “spend down” our meager savings so he could get the In Home Support Service (IHSS) coverage for a caregiver. I can’t do my job from home, I have to work out of the house. You can spend down your meager savings…. in creative ways… and hide the money (not “legal” but it depends on how you hide it!). He is on the medically needy waiver which is how I’m allowed to have an income at all.
    I don’t understand why the government feels it is reasonable to put our family in a situation where one major expense (car accident? Job loss) would put us on welfare and on the streets, is “helping.” But I can’t change that.
    And the fact is, since my husband is unable to do ANYTHING for himself, I need the help. I have two boys at home (nearly 9 and 6 years old) who both also have special needs. Burnt out? HELL YEA. I’m looking for a caregiver —- at the princely sum of $11.50 per hour, which is what IHSS pays. But it is that, or investigate placement in a home, and I can’t stand the thought of the boys not having their daddy around. And heck, I think if you do that, Medicare takes his SSDI income anyway… which leaves me… screwed!

    • mscaregiverdonna says:

      Your story is so common! If you want to maintain responsibility for yourself and your loved one, the government offers no assistance. You have to become a burden to the government in order to be recognized as needing help. Don’t they realize how much money we save them by keeping our families at home? It’s truly ridiculous…don’t get me started. Thanks so much for sharing and good luck with finding a suitable caregiver to be at home with him while you work.
      God Bless

      Donna

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