Ernie there are big problems with the system for the mentally challenged in Texas. They have not even placed any clients for about 3 years now, there are 20 years worth backed up in our county, I don't know what it is in Harris County. Indiana has its share of problems too.
In November I got a small amount of SS more, so Sue Anne draws off me. She was over $3 for December so she lost her medicaid, we think she may be back on it in January maybe. I had planned to just transition her over to Indiana's but if she isn't qualified again we have to start the process all over again She has medicare but you cannot buy any supplements for her we would if we could, but the premiums would probably be prohibitive. And in the 70's they turned mentally challenged out of the institutions wholesale onto the streets, many people witnessed it in downtown Houston, that was where a lot of the street people came from. You just don't know the nights I have laid awake agonizing over this.
But you see without at least $1 in medicaid she not only lost it, she lost her place on the grouphome list we had waited for for 12 years. That means if something happens to us then what. And what would happen if we were dead and she lost eligibility, would she get kicked out on the street? She wouldn't survive 3 days. I wasn't going to say anything about all this. But I had worried about this happening for a long time. Our MHMR people went to bat for us and apparently Texas does not have a law like other states to protect clients like her. The only reason she got served after 12 years was because the ARC filed a lawsuit many many years ago saying they were not serving the least able to protect themselves and they won against the state of Texas, so she got service for about 3 years. I said well when we leave at least someone else will get her slot, they said no, the ones that drop out they will not put anyone else in, I guess the ones placed because of that lawsuit but about that I'm not sure. I just felt like the writing was on the wall for her.
I'm not wanting any pity party here but I didn't like seing illegals getting the benefit of services there and someone who is a citizen with taxpaying parents getting the short end, but that's just me, but obviously that was just a small part of it.
We do know people up here and I am going to start working in the system to see what we can find for her. We have to get her lined up for a slot somewhere, we will be 67. I hope we have 20 more good years.
A private group home easily runs $6000 a month. At one time we planned to do that, but they were basing the 30 years of her projected care on our savings plus her getting her dads SS, 3/4's after his death but as many of us know with extremely conservative investments there is little or no income and that modest % added to it would have done it. Tom decided to work a few years longer to raise the amount she will get but even with it the money will run out long before 30 years. So that's when I decided that we would just try and keep her at home long as possible. We do not know the longevity of someone with Williams, we do know there are some in their 50's now, so who knows. I don't know what will happen down there to people like her but they will stop serving them quick as they can, Perry has already said they won't take federal medicaid so you know its not going to get better for the disabled, but obviously you know I am very prejudiced over this issue. I understand the entitlement issues, etc, really creates a quandry for folks like us. I so hate for things like this to be political.
So see its a lot of issues and we couldn't take the chance down there of her being left on the street, like I said right or wrong I don't know, think its panic mode because all the states are trying to jetison the least able to care for themselves, both people like her and the poor elderly, I kept hoping it wouldn't happen to her there but looks like it may have. I don't know, what would you folks do?
And no way would my MIL come with us and I can't care for both of them in my home, I tried that with mom and it just didn't work so this way she can stay in her home for hopefully, a lot longer.
So that's my story, just the toss of the dice or whatever, but we will work it out. We are hoping by keeping her home longer we will be able to pay private when the time comes if he and I don't eat our savings up in medical expenses. It wasn't the plan but stuff happens. And that's my story and I'm a stickin' to it!