Medicaid Waiver Workshop

Randy and I attended a Medicaid Waiver Workshop this morning. Our local DS support group sponsored the event and brought together people from the various departments to explain what services they offer and why we need to get on the interest lists. The lists are about 7-10 years long, so some major early planning is required. It was helpful, but massive information overload! There is a lot to wade through, but the good news is that so far we are doing well. We are on all the lists we need, so now we wait and confirm our place annually to ensure we are not accidentally dropped.

We did meet someone who has a daughter with Phelin-McDermid syndrome, which is a missing portion of the 22nd chromosome. She was just diagnosed this June and she is 5 years old. Her mother said that she functions on the level of an 18 month-old. She has been to 5 different doctors who couldn't determine a diagnosis, and finally a school therapist suggested that she visit a geneticist. So while she has been dealing with this for several years, this is just the beginning of her understanding what she and her husband are facing. There are only about 400 documented cases in the world, so she is feeling very isolated. Since we have had several people with other genetic disorders come to the DS support groups, I encouraged her to come to our meetings. We have so much in common; I hope we can encourage each other.