After lots and lots and lots of work, I think we have actually gotten Jack approved for SSI. Dealing with government agencies is something I think people should actually get paid to do. I think there should be people out there that know the ins and outs of these facilities, able to find the fastest track to getting things done, the right numbers to call (and know the RIGHT times of the day and week to call them...) and know where all the offices are, suite numbers, hours of operation and the quickest way to get to them.
I have got a good hold on Utah, state agencies are so tricky, but I have spent years figuring it out. I know what to say when starting a "chat" with the Dept of Workforce Services. I know they need my case number, social security number, phone number and address. THAT'S RIGHT- THEY DON'T NEED MY NAME. It is an arduous feat to maintain our benefits through the state. It is especially complicated because of Josh's work. We are in monthly contact with them faxing in reports of income and changes. It is a lot of work, and if there WERE someone who knew the ins and outs then I would hire them to maintain Medicaid for Jack. Then I would hire them to maintain our federal benefits with Social Security.
I'm not even sure how it is going to work, and now that Jack's surgeries are all complete, the funds will just be used to keep him alive and thriving (clothes, food, education.) But being that the SSI fund is quickly depleting, who knows how long he will have it.
My advice to other parents out there with children that have CHD's or any other medical need, do this SOONER than LATER. Honestly this could have saved lots of financial woe's that fell upon me and my husband over the last 5 years and possibly have changed our situation for the better. I'm grateful for everything, the insurance we DID have, while we had it, the patient accounting department's of the hospitals, and of course the fact that Jack is doing well. But not knowing what I was getting into with my first born has certainly taken its toll, and I would like to help other parents out there get better control of their lives when the blessing of high maintenance children come into their lives.
Once the SSI program is clearer to me, I'll share more. But they didn't tell me much, other than we were approved. So I don't even know what I'm in for (again.) Stay tuned.