It has been a long road with the Medicaid Waiver application. We are not exactly sure whether we have been approved for the Medicaid Waiver, but we were contacted by CLTC (Community Long Term Care) on Friday. The lady who called said that we have been funded for 35 hours per week of in-home nursing care for Caden through CLTC. That said, the lady also told Sherry that this is a different program than the Medicaid Waiver. She told Sherry that CLTC is part of the same agency that handles the Medicaid Waiver applications, but her office is not part of that process.
Regardless of how we got approved for this funding we still have staffing issues. We have not had a nurse come to us through a staffing agency in weeks.
I continue to pursue the Medicaid Waiver diligently for couple of reasons. There is always a chance that the staffing issues will sort out and we will be able to use the current CLTC funds and the Medicaid Waiver when approved. The other reason I continue to pursue the waiver is because I am so dumbfounded by the lack of coordination between the state agencies who deal with the Medicaid Waiver application process. Sherry told me the other day that I should run for state office just to get in there and work on cleaning up this mess. Maybe later, but in the meantime I am going to learn the process the best that I can and then help educate others on how it actually works. Below is a copy of a letter that I sent out Friday to appeal the most recent hurdle in the Medicaid Waiver application process.
I know all of this sounds very confusing. I wonder sometimes if the confusion is built into the process on purpose to try and weed out those who are not persistent enough to actually endure this bureaucratic nightmare. I would guess that many people would have given up by now. While we have not given up, we have taken steps to deal with the 24/7 care that Caden requires even without nurses.