Sorry for the delay in posting again but the redetermination process was really frustrating, draining, upsetting, exhausting, etc. I really did not want to deal with it or talk about it because I got so worked up every time I thought about it but now that there is some distance I think I can handle it.
My last post ended while we were waiting for the official letter of termination to arrive. Unlike the week promised by the support coordinator supervisor, the official letter for termination of services did not arrive until 2 weeks or so after my conversation with him. During this entire time, I had been in frequent contact with the supervisor and he kept telling me that he did not know what was going on because another section of the department was handling the redetermination process. I was naive and believed him so I was shocked to see his signature at the bottom the letter terminating services. I really felt like I had been deceived because it did not make any sense to me that the supervisor would sign the letter if my son's termination of services was "handled in another department". I did not think I could have gotten more upset than I already was, but I definitely did.
Once we received the letter, we met with our attorney as soon as we could. We also stayed in constant contact with our advocate. Our attorney contacted the agency on our behalf to let the agency know that we were filing an appeal to the termination. During this period, I also got in contact (through a mutual friend) with another mom of a son with Down Syndrome and she suggested that when we file our letter to the agency stating why my son's services should not be terminated, we also include letters from his therapists and our pediatrician supporting our position.
One thing I learned through this process is we do have a very supportive network. The therapists, without hesitation, agreed to write letters on my son's behalf. Our pediatrician also agreed to write a letter on my son's behalf advocating why he needed to maintain services. Interestingly, our pediatrician asked me to provide an initial draft of a letter and thankfully a dear close friend who does pediatric social work was able to help with the letter. I was able to pass along all the letters to our attorney who also found case law to support our position.
At the same time we had to take our son to get a psychological evaluation that would hopefully provide results favorable to our position. Again, it was through this new network of advocates that we were able to find an doctor who happened to have an availability in the critical short time frame under which we were working. The anticipation of the evaluation was brutal. I tend to stress and worry but I don't think I have had this type or degree of stress ever in my life. We could only hope and pray that the doctor understood our position and why we were having our son tested. And of course, we had to hope that our son did not do too well on the testing. Can I say that really sucks. The few times, I have had to hope that he does not do well were just awful and it does not get easier over time. Really, really, really hard and counter intuitive to every thing I have to root for my son to not do his best and even to fail because that will help him more than doing well. It is just the WORSE feeling as a mom. I could say more but I can feel myself getting upset just thinking about it so I'll stop. In the end, the test results supported our position for the continued need for services.
Once we filed our appeal all we could do was wait. Amazingly (and I say this with as much sarcasm as I can muster), our newly assigned support coordinator, called us while this was all going on and asked if he could transfer my son's file to another division because, you know, the zip code that he was covering was getting too big and they decided to split it up so my son could have a new support coordinator (who had no clue what was going on)?! We shot down that request in writing as quickly as we could. There was no way we were going to let my son's file be transferred to someone new so that it could get lost in the shuffle. The support coordinator accepted our decision and so all we had to do was wait.
About 3 weeks after we filed our submission, we got the response we had hoped and prayed for. Our son's services were reinstated. Just to be clear, there was no gap or stoppage of services while we were filing the appeal - the government does not take away services immediately but if we had lost then the services he was receiving would have eventually had to stop or we would have had to pay for them out of pocket (very expensive). It was such a huge huge huge relief.
In the end, in spite of the painful process, I learned a lot and the biggest thing I learned was that I needed to be more involved with the Down Syndrome community because there is a lot I do not know.
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