January 22, 2010

Deeming Waiver

I have finally bit the bullet and gotten down to business with the Deeming Waiver paperwork (formerly the Katie Becket waiver). This is an application for state financial assistance for Chase's medical needs despite the fact that we don't qualify for medicaid. The idea is that if the state pitches in to help with Chase's therapy and medical visits right now, then he will be able to successfully participate in the community in the future (hold a job, live independently, get a higher education) and will not need a large amount of government aid when he is an adult. Early intervention is so important with kids with Down syndrome, and this makes sure that Chase has access to whatever he needs to have the brightest possible future.

Although this sounds like an amazing opportunity, it is not easy to be awarded this waiver. Many people are denied, and it is a time consuming process. So far I have put together three applications for this submission and have gathered supporting paperwork from four therapists and seven types of doctors. As you can imagine, this is amounting to quite a thick final product. It is also quite an emotional ordeal, as I have to write out all the ways in which Chase is delayed as well as all the medical issues he has.

The whole process has been an eye opener as to how incredibly deficient the government is (especially the Department of Family and Child Services) but how very helpful other parents can be. DFACS does not often answer their phone, fails to send applications when requested, and frequently sends us the wrong paperwork. They even sent a case worker to our house armed with background information on who our baby was, but who called Chase (dressed all in blue...) a girl multiple times until I corrected her mistake!

The parents I have met who have kids with Down syndrome, on the other hand, have been absolutely amazing! One mother even came to my house this past week to work with me on this application late into the night, as she had been through the application process several times before and had alot of wisdom to impart. Although I am usually hesitant to ask for help on these things, I was relieved when she revealed how thrilled she was that I asked for her advice. After going through this tough process so many times (and even having to go to court over this), she was more than happy to finally be able to impart the knowledge she had  gathered over the years.

I am going to meet with one more person next Friday before handing in our application in person. So Monday February 1st our thick packet will be delivered by hand to DFACS after which we will be assigned a case worker and put in queue to have an interview. We will probably hear their answer in several months, but at least the ball will be rolling! Say a prayer for us - after all this work we definitely want to hear good news!


  1. Oh goodness, this Katie Becket waiver is new to me, I mean I've heard of it but is it just for certain states? If you don't mind me asking do you all pay for his therapies now or does your primary insurance pay for it. I'm asking because we will most likely move in a year or two and the South is a possibility. Just curious about some of the other states and how it works.

    I hope you are able to get this waiver after all of the hard work you are putting into it!

  2. Huh, never heard of that waiver... I would love to know what each state offers and compile it in a pdf accessible from my blog... daunting project though!

    NYS has a Medicaid waiver... for those who don't qualify for Federal medicaid... it gets you medicaid (usually as a secondary insurance) and some other, hard to track down and actually receive, perks. EI is free in NY (right now but it is in the state budget to start charging... hope that doesn't pass!) and here our EI coordinator will do the paperwork to get the Medicaid waiver.

    You mention the best resource of all... other parents. I love how both locally and across the web families come together and help each other along this path. In some ways I feel like we are all one big extended family :-)

  3. I am just beginning the deeming waiver process myself and dread that it all entails, but from what I heard it will definitely be a huge financial relief. I hope it works out well for you!!! Let's continue to pray for one another. We are very special parents of very special children!!!

  4. Hi Meredith,

    I just met you last week at our DSAA ladies night out and here I stumbled upon your blog. :) Glad to have found you online. (I'll look for you on FB and see if we can connect that way.) I'm sending in the appeal this week on my Deeming Waiver application. It is so exhausting! Keep your fingers crossed for me.

    April Swisher-Hartle