We have been running into some issues with our insurance not covering things all of a sudden (I mentioned Prevacid earlier) and it just keeps getting worse. To fight these issues can take a lot of time. In some cases I don’t have time to fight these. We need the service and we can’t do without. So it was suggested that I look into Medicaid waiver programs.

Back in Reagan days there was a little girl named Katie Beckett. She and her family really paved the way for a lot of special needs families today to be able to live at home instead of institutions. When you hear about Medicaid waiver programs they are often referred to as the Katie Beckett program. I did some research on her and she really has an amazing story. Being that she pioneered so many of the issues we deal with everyday I felt that I need to at least mention her in this post. Thanks, Katie and the entire Beckett family!

When we were in California we were told that Casey should be eligible for a Medicaid Waiver. Basically this would get her additional coverage for things our insurance would not cover. She would be able to get onto this list based on her severity, not on the household income. To qualify for income based services you can’t make more than $20K a year per household, or something like that.

I called the numbers given and everything I could find in California to try and get Casey into these programs. I went around and around with the different agencies I called. Many of them refused to acknowledge the programs even existed. Some that admitted there were such programs refused to admit that the were not income based. It was so frustrating. I spent hours, day after day, for months trying to get Casey into the programs. We did not have nursing at all during this time and to take even a 5 minute phone call was tough, much less hours. After not getting anywhere I ended up giving up. I did try again 6-9 months later, but ran into the same issues. I just did not have the time to fight with them about it so we just went without. It was very frustrating.

As soon as it was suggested again I went back to the grief I had dealing with these in California. I agreed that I needed to try, but that I really did not want to go through this again. I had not tried since coming to Texas. Even though I feared the worst I did suck it up and started collecting information, numbers, etc to dig in.

I was so HAPPILY surprised. The first number I called listened to me and put me directly in contact with the right people to get me started. As it turns out there are many waivers and depending on your situation you may qualify for one to many of these waivers. The whole thing is really confusing. After trying to make sense of everything and figure out which lists I need to get on I stumbled across a fabulous link. Anyone out there looking into the waivers for yourself, aged, or disabled loved ones check it out.

There are a bunch of links here that go over the different types of waivers, who qualifies, how to get on them, all that good stuff. After reading through these documents I am so much more comfortable navigating the system now. I wish I had found this site sooner.

I still have a lot of work to do to get onto these lists. Some of the lists have years of waiting periods. At least I know more about the programs out there and what to expect now. I just really wanted to share this link for anyone that can use it. I hope it can help!

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