I wrote MANY months back about having to take Casey to stay at a nursing home for one night. It was a horrible experience and really put a lot of things into perspective for us. Mainly, that we want to do everything humanly possible to avoid having Casey ever end up in a place like that.
You may be trying to remember why we went there to start with. States offer Medicaid, but usually just for very low income levels. Thankfully, many states (including Texas) have chosen to adopt exceptions for severe cases. These are often referred to as Rider 28 or Katie Beckett Waivers (after the little girl who inspired with law). Each state has different guidelines, and in order for Casey to qualify, she had to have more than 3 disabling diagnosis, be examined by a state nurse, provide letters of medical necessity, and finally she had to stay 1 night in a state certified (there were only a few to choose from) nursing facility. While at the facility, the staff monitored Casey’s care and condition then signed off on her severity.
Once in the program, Casey’s continued eligibility is based on her income rather than the income of the household. This is a really big deal. With Medicaid combined with our private insurance, we are able to do a lot more for Casey. The even bigger deal is that if anything were to ever happen to our existing insurance, Medicaid would take over for Casey. Tim and I will have to figure something out for ourselves, but at least she will be covered.
Now the trick is that in order to keep her covered, she can not have an income. It’s not like she can go get a job, she is only 3, so we aren’t worried about that. However she can not have money paid directly to her. If she were to directly get a sum of money it would disqualify her for medical coverage. This is so scary to us.
After doing a lot of research, Tim and I spent the past couple of months working with an Elder attorney that specializes in supplemental needs trusts. These are hard to find, but worth every penny when you consider the cost of us not having something in place. Now that we have a trust for Casey, if anything were to happen to Tim and I, Casey could still use the funds from our life insurance and also continue to receive Medicaid for health insurance – since we name her trust as the beneficiary, instead of Casey directly. Tim and I are not leaving her a ton of money, but the amount that we have in life insurance for her would be enough to get her disqualified for Medicaid coverage if we left it to her directly. Then if that’s not bad enough, if she is disqualified she would have to use any money we leave to pay her medical expenses, which would be gone in a year or so max. Then she would be left with nothing. We can also use the trust now for other reasons, like when we do fund raising for some of her treatments.
We just can not bare the thought of her ending up in a place like we had to stay a while back. We just signed all the papers of her trust a few days ago (we even took Casey with us to the signing) – what a huge relief. We feel so much better knowing this is in place. We can’t say enough good things about the Greening Law Firm here in Austin, TX. I know people love to bash lawyers, but these guys really surprised us – they get it.