State Resources
We could not do what we do for Maddie if it wasn’t for the resources through the State of Michigan. Thankfully Nicole and I have good paying jobs. However, I think we might be in a world of financial hurt if it wasn’t for the resources that are available to us.
The biggest thing in my mind is that Maddie can go to school from the age of three until twenty six in the State of Michigan. Other states usually cap out at 18 or 21. Childcare will always be a struggle for us. Right now, we’re blessed to have a great caretaker as well as a day care. When Maddie gets older, finding a day care that will take Maddie after school will become harder. This will become harder due to several factors. A lot of these factors will boil down to how controlled her seizures are and if she is potty trained.
I list school as a resource because it will allow Nicole and I to continue working. We’ve already had discussions about one of us leaving the job force. This was due to some uncertainty in child care needs for Maddie. Thankfully her child care is now stable and we can continue to serve our community in our respective roles.
Another resource that we use through the state is Children’s Special Health. This is a special carve out in the medicaid bill. It is designed specifically for children who have long term care needs. Children’s Special Health is an income based program. Nicole and I pay in a set dollar amount that is linked with our tax bracket.
There are only certain diagnoses that are covered. Even though Angelman Syndrome is one of thirty syndromes and diseases that are qualified at the federal level as debilitating, Angelman Syndrome is not covered by Children’s Special Health. For Maddie, there are two diagnoses that she uses under Children’s Special Health. One diagnosis is related to Maddie’s low muscle tone, and the other diagnosis is related to her seizures.
Having to find a diagnosis to fit Maddie instead of using a diagnosis that is the root cause of all of her problems, is frustrating. It is little nuances like these, that make Children’s Special Health difficult to use.
Since Angelman Syndrome is considered a rare syndrome, there is a push to have a child diagnosed with autism. An autism diagnosis will open up more resources at times than an Angelman Syndrome diagnosis. It is times like these when I look at the healthcare system and realize how broken it can be at times.
Down the road Nicole and I will have to go through the courts to become Maddie’s guardian once she turns 18. Thankfully we are not there yet. We met a wonderful couple who live in Michigan who guided us through the process. We are so thankful for the resources that are available to us through the State of Michigan. It can get frustrating at times, but we just take it one day at a time, just like our Maddie.
-Written by Adam Birchmeier
