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.


Kyle and Alli said…
Great news. Be wary however with your SSI funds. There have been several threads on the IHH forum in the last year or two with people's horror stories of SSI. While it is fabulous, the system is still not perfect and in Utah, it appears to be very overworked. MANY families were reporting that they had to pay back SSI funds because administrators had not made correct calculations on payments, despite the parents faithfully reporting income changes. We have chosen to avoid SSI because of these problems and the fact that we have great insurance right now. Just watching the problems other families were having months and months later, I would try to save all of the SSI money and put it into a safe account. Use as little as you can just so that you know you still have the extra money to pay back if and when you are notified that they messed up. I don't want to be a downer, but would rather make sure that this continues to be helpful for you guys!
Hm. Well crap. Who are these people? Can you put me in contact with them?
Patty and Kevin said…
Hi Lisa,
I don't know you personally, but I do follow your blog. My daughter, Laurie, qualified for SSI when she was born. We received monthly SSI payments. The problem happened when our income increased. We sent in all the required paperwork. With our higher income, we no longer qualified for the SSI. However, it took SSI several months to process everything and to stop payments. Luckily, I knew that we no longer would qualify and I set that money aside. So after several months of receiving payments after we no longer qualified, they sent us a bill for a few thousand dollars.

If you find out you qualify for SSI, I think you're fine to spend the money as you see fit. It's when you have a change in your financial situation (especially if your income increases) that you need to be careful.

You can always call your caseworker directly and find out if you will still qualify. SSI really did help our family out quite a bit. You just have to be aware of the rules and be careful.

Feel free to email me if you have any questions...
Thank you SO much Patty, those are the exact tips and hints I need. I will for sure keep your email. Thank you for reading! I hope Laurie is doing well!

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