I think the biggest problem is that the information and how to find it just isn't out there visibly. There's a guy here who's emailing me privately about the Katie Beckett program. He must be half attorney because he knows so much about it.
I'm definitely not half attorney, but I have been fighting my own battle with Medicaid for about the past 18 months. And no, I don't get any special treatment or help because I work for the State of Wisconsin.
It's sad that LBJ is only remembered for Vietnam since Medicaid has been a great help with my daughter. She has cerebral palsy from a birth injury and has had close to $300,000 in medical bills since she was born, about 15% not covered by insurance, all of which has been picked up by Medicaid. There is a treatment called HBOT that is supposed to help with her condition, but Medicaid has refused to pay for the treatment, which is why I sound like an attorney. I'm actually close to filing a case in federal court just to get the state to pay for the treatment. I have the advantage of a case in Georgia to help me - Georgia Dep't of Community Health v. Freels, 258 Ga. App. 446, 576 S.E. 2d 2 (Ct. App. 2002) if you want to read about the insanity of Medicaid.
I'm disappointed that Rex did not receive the help he needed from Medicaid because it was the responsibility of the state to ensure he received that help, but I know from my own experiences that it is often the case that the opposite is happening. Some states try to do the very least they can under Title XIX just to save money. There was even a case in federal court against the State of Arkansas where the judge wrote in the decision, "Finally, we remind the state that it has a duty under 42 U.S.C. § 1396a(a)(43) to inform Medicaid recipients about the EPSDT services that are available to them and that it must arrange for the corrective treatment prescribed by physicians. The state may not shirk its responsibilities to Medicaid recipients by burying information about available services in a complex bureaucratic scheme."
So it is no wonder that Rex ended up where he is. From the beginning, the State of Idaho shirked its responsibilities to inform him of the rights his daughter has under Title XIX. National healthcare will not help in this case since it is more or less already there. The problem is that no one knows about the benefits because they are buried in a complex mess of social workers, forms, and approvals. Generally this is worse in states where they hire a private HMO to manage Title XIX, since the HMO is paid based on how much money they can save the state. This leads them to do pretty much anything they can to deny services.
As for me, I have received great support from my local community to raise the money to pay for my daughter's HBOT treatment, regardless of what happens with Medicaid. My family organized a fundraiser - hannahshopefestival.com - and the community really came through. Now I can get my daughter the treatment she needs and worry about Medicaid later.
I am honored to work in a profession where the community is so willing to help one of their own in a time of need. Please do what you can to help Rex since you never know when something just like this will happen to your family. I know I never expected anything like what happened with my daughter. I'll definitely be buying my tickets when I get my paycheck tomorrow.