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 comments 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 thought, “Great, he has a 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 costs a monthly premium that 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 doesn’t provide for home care assistance on an ongoing basis, so if I want someone to care for Lynn while I go to 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 of 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 was 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 are one of the main reasons I’m hesitant 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 to pay 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 tract 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. Does anyone have any better ideas?