As a general rule of thumb I try not to air my frustrations in a public way, but today I hit a low and I just need to vent. I'm going to allow the time I take writing this to feel sorry for myself and vent about the conundrum it is to have a child with complex needs and to try to make a living. Here goes...
Let me start by saying, I am well aware of the abundances in my life and the mere fact of me even having access to many of the opportunities I'm going to talk about is unthinkable in many places (even in other US states!). However, I also believe that systems are not perfect and they can surely be improved. So...
Over the past year, we have submitted requests to Mass Health for three pieces of equipment:
- A gait trainer (which gives Kai the ability to walk)
- Adaptive communication device
- Toilet chair
(side note: We have primary insurance through employment, but they do not cover durable medical equipment, thus our need for a secondary insurance for our son).
Of these three pieces of equipment, only one has been approved and deemed medically necessary and that is the toilet chair (thank you!). The adaptive communication device has been denied twice and we are now finishing up a third 8 week trial of a device in order to provide more data. We have been working on this project for two years.
The gait trainer has been denied three times and our only option now is to appeal, which I happily submitted. This week I received a letter stating the date and time of our appeal (which is at an office about 2 hours from our home). The date is very difficult in my calendar due to work constraints, so I called the rescheduling number. I was told that work is not an excuse to reschedule, but I could attend by phone. Unfortunately, that is not going to help me on that particular day. So, options here are:
1. Give up the appeal, which means no gait trainer for Kai.
2. Take off of work (again)
So technically, we could purchase a gait trainer for Kai, which costs between $2-5k. We could put it on a CC, get a loan, do a fundraiser, etc. You could even argue that it is not medically necessary for Kai. I could argue that on numerous points that I won't go into here. But let me put this in perspective for you... Kai also needs a new adaptive bike as he has outgrown his. Certainly this is not a medically necessary item so we need to buy him a bike; just like all other American families. His last bike (and only bike) cost $5,000! I could look for used ones, but because of his needs these items have some customization. So, buying a gait trainer AND a bike seems like a lot right now; especially since state insurance in CA paid for his first gait trainer.
Let me go a little bit into this second option: take off work. I am a former classroom teacher and staff development administrator in public education. Since having my children and moving around due to my husband's job, I decided to seek other opportunities for employment because of the demands related to parenting in general, and the intense needs of Kai. I work two part time jobs, which pay me about 1/3 of what I made in former jobs, but I am happy to take these opportunities as they allow me a lot of flexibility to be there for my kids and also schedule the multitude of appointments for Kai, as well as keep up with his paperwork.
In one of my jobs, I teach a series of 16 lessons (20 min each), twice a week for 8 weeks. I am in the classroom for 3 hours two days a week. Wouldn't you guess that this is exactly when my hearing is scheduled! Of course, I could find a sub, which is complicated because I mentor two new instructors during this time- so I am limited on who can sub for me. But I also have gotten a sub two other times during this 8 week period due to important appointments for Kai. In the grand scheme of things, I could do without the money I earn for those three hours, but honestly- I'm tired of having to make these choices. I am trying to find a way to have a career and take care of my family- and it is really difficult. I know I am not the only one out there trying to do this, but today it just felt overwhelming.
Could I get my husband do attend? Sure, he'd be happy to, but as it happens, he is going to be out of the country on business for 19 days, in a location with a 9 hour time difference. Not sure that is going to work. During this 19 days, Kai has an appointment for his communication device in Boston. When I tried to change this appointment for work, the next available is in October (uh, that's 8 months away!)- so I guess I'll be finding a sub. He also has a sedated MRI after which we get to make really exciting decisions like: Do we implant a device in him to deliver medication to his spinal cord? or Do we drill two burr holes in his brain and implant an electrical device to control his movements? Which needs to be decided before he has major hip surgery to actually form hip sockets because he does not stand and walk enough! (Do you see where the rescheduling of the appeal was the last straw today?)
The fact that Mass Health does not treat people with dignity regarding these issues is heart breaking. I realize this is a major first world problem- but today, I'm done!! The system is so debilitating for people and it makes me angry, frustrated, and sad. Even if I was a millionaire, it would be frustrating- it's the principle of the matter.
And then I get home and see this sweet face and I take a deep breath. We will not let them bring us down, but I will allow myself this moment to feel the frustration and give myself the space to be.
I am going to bury this post with something more uplifting from Kai, but I need it to be on record for my own sanity, even if no one else reads it.
