Saturday, May 11, 2019

She's More Than Money to Me

This week has shown me a lot about people, about beliefs and about the reason people choose the path of what they hope to do with their lives, it also shows me how our system is broken, how money drives too many and how as a parent with this challenge standing, staring me straight in the face I realize how important it is to keep fighting even when I couldn't sleep because I was sick, all night long.

On Monday, I got a call from our BCBA, It was one that I didn't understand the impact of until later this week. When our BCBA is in our home, I listen as laughter fills the house while she works with Seraphina. I smile as Serrie plays chase manding for attention and the want for attention, something we didn't know if we would ever see is precious. I knew it was only time and I was waiting to see the incredible growth and guidance that this woman was going to give to my daughter and my family. We have started to see change in just five short months and I was certain in two or three years, that my child may in fact be a completely different child than the child she is today. Then, that call. The one that said this June she would be leaving, taking a promotion to move to Texas. While tears welled up and flowed from my eyes, I thought of the number of children she could help and as a clinical director what could she do for others that she has already started for us? Then it sunk in. I would need to find someone new, someone to accept our family. Someone to accept her. That wasn't going to be as easy.

I worked quickly giving call to a BCBA that had a relationship with our sweet Serrie. Dead end. Endless calls. Would someone take us? Oversee her? Choose to help her?

So far, the answer no.



For those who have followed this journey, insurance has been a struggle, from day one. Denials. Limitations. Lack of coverage. It was all in my repertoire. I spent hours, researching, calling, crying, and hoping something would change. I traveled all over New Jersey asking Senators, Congressmen and Representatives to listen to the fact my child and others like her were not getting the care they deserved even though they lived in New Jersey where children, like my own are supposed to be safe, protected and helped. In January that changed. Finally we had coverage. Here we are.

Recently I was denied by PerformCare once again. Instead of fighting a fifth time, I let it go because I didn't want to be greedy. I didn't want to take money from another child, services from someone else who didn't have any services available to them.

Now this.

I am back at square one. And its pretty obvious that there are two types of people. There are those that have chosen this path to help children, children with extra needs, children with autism, children that need them and there are others who have chosen this path strictly for money. Last night our last hope insisted that the least she would accept is $85.00, an hour. Our insurance pays $48.00. That last hope denied my child based on money. I wonder exactly who these people think they are choosing money over helping a child?

I am shocked.

I am saddened.

I know many teachers, they choose the profession to help children. Certainly, they need a living wage but they would never say "no" because nearly $50.00 an hour wasn't enough.

Last night, I was up. Physically ill. Vomiting out the pain that I feel fearing I cannot give my child what she needs, fearing that she won't get what she deserves because I haven't been able to provide it and I wonder, is she not more than money to others? Its apparent she was to our first BCBA, now if only I could find someone that would accept that pay once again.

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