If you’ve been alive for more than 18 years, you probably understand how health insurance works, or at least understand the concept of it. What you may NOT understand is that most health insurances are split into two (sometimes three) separate smaller companies for separate coverages. For example, say someone has Capital Blue Cross for their insurance- their medical insurance will run through Capital Blue, but their mental health benefits probably would not. Most times, Capital Blue’s mental/behavioral health benefits would run through another company such as Magellan, Carelon, Beacon, etc. At my previous job, I was responsible for obtaining insurance authorizations through these mental health insurance companies so that clients could get testing for Autism and other disabilities. Fair to say that after a few years of doing this, I was pretty familiar with these processes and these companies. Because I didn’t have to deal with the medical side of these companies too often, I didn’t really have to worry about appeals or having to fight to obtain these authorizations. Overall, my experience has typically been that the mental/behavioral health side of insurance companies are easier to manage than the medical side.

This idea holds true when it comes to our personal experience with Greyson and obtaining authorizations with his medical insurance. At the beginning of the summer, I requested that he continue to receive his nursing services during the day and once the nurse’s shift was completed, he receive Home Health Aide services (HHA). Essentially I would become a certified HHA so that I could be paid to take care of Greyson while the nurse was off duty and for some overnight and weekend hours. My plan was to continue to work my current part-time job during the day while he was at school, and then work as a HHA for the remainder of the hours that he would be approved for (probably 20-25 hours a week). Unfortunately the first request was denied due to an issue with the nursing agency and confusion between the hours being split between the nurse and the HHA. After the denial, I appealed the decision and had a grievance meeting with the head of the medical director and several other staff from his insurance company. Due to that mix-up, I pulled my appeal and restarted from the very beginning to request the HHA hours again.

We got the second denial in mid-August, but this time it wasn’t a full denial. This was a partial denial, with a modified approval for only nursing services. The notice stated that the following was approved: 8 flexible hours per day 7 days a week for parents’ sleep. Skilled nursing 8 flexible hours per week for important home tasks. The following is denied: Home Health Aide services. SO essentially they are providing us with additional nursing hours, including 8 hours of overnight assistance and 8 hours a week of time for us to do things at home that we are unable to do while Greyson is home and in our care.

Now, this authorization sounds great, right? A night nurse and basically 8 hours of respite care where someone can ‘watch’ Greyson so we can do home projects, etc.? Well, yes that would be great, but you need to have a nurse available in order to have all of that. Back in April, we were informed that Greyson’s current nurse (we will call her C for the sake of privacy) would be having surgery in October and would be out on leave until after the New Year. When we were notified of that, we requested that Greyson’s case be placed back on the “needs list”, which essentially is the list where his insurance company sends messages out to all local nursing agencies and lets them know that there are hours available for a client. They notify them where the client lives, their age and what disabilities the client has and most times agencies try to grab any clients that have full-time hours as their availability. I bet you can take a guess at how many have reached out to us to take on Greyson’s case.

If you guessed zero, then you are correct!

Well, not entirely true. We had one nursing agency reach out to us other than his current agency and we had a meet-and-greet set up with a potential nurse, but the nurse cancelled the morning of. The current agency has known that C is going out on leave for months now and has not found a new nurse to fill in, despite being “their top priority” for months. So again, how great are those additional nursing hours when you don’t have a nurse, let alone a nurse to cover the hours that Greyson currently has staffed?!?! Needless to say, this appeal hearing will be taking place on the 24th, with my main argument that these services are medically necessary, yet without a nurse available, a HHA is an appropriate option if the role is filled by me. I do have a lawyer from the PA Health Law Project assisting me with my presentation and argument and I’m hopeful that with their help, I will be able to finally get this approved.

Away from insurance and confusing appeal talk, my baby sister is getting married next week! We are very excited for this wedding because all 4 of the Martins will be in attendance!! Yes, you read that right. Mr. Greyson will be attending the wedding, too! He will be bringing two dates with him, his behavioral aids A & A (they both have A names so I’m not sure what to call them for privacy LOL) and will be wearing his little outfit picked out by my sister and her fiance. I am looking forward to my extended family meeting him, since he has not attending any large family function before. He did not attend functions because I was always nervous that he would cause a scene or make a mess, but I think we have gotten to the point in his therapies that we could remove him from the ceremony if needed, without him having a large behavior. I will come prepared with a second outfit identical to what my sister has picked out for him, and plan to have a travel bag stuffed with balloons, toys, snacks, etc. to occupy him if he gets bored. Hoping we can get one really good family photo of us all at some point in the evening!

Finally, the last bit of fun news is that The Wizard of Roz sales are finally open and books are selling! Release date is November 1st, 2024 and we have been sharing the posts like crazy to promote this fun, heart-warming, and accurate representation of our family and what a typical movie night looks like at our house. Share this book information with family and friends, and maybe they will share with someone else, too. Our goal is to share our family’s story about our experience with Autism and show others that Autism isn’t scary or a disease- it’s a spectrum, and it’s a spectrum that we at our house touch at both ends. The Wizard of Roz is a light-hearted way to share what Autism is, how it impacts families and shows how a family’s love and support is truly the only home you need.