Court was not what I had expected. My sister is a lawyer and she agreed to represent us. Before we got to court she tried to work with the Attorney General (AG) to resolve this case. She emailed, and he didn’t respond. On our end we tried to make the necessary correction to the paperwork, so that if the paperwork was the problem, and it was, then we could fix it and move on.
My sister, bless her, tried to talk with the AG before court to see what we could do to resolve the case. He was unwilling to make any concessions. Thus, the case would go to court.
His first witness was the Speech-Language Pathologist for the State. This individual reviewed the documents we provided to see if Jackson was still eligible for two hours of speech. Based on paperwork he was given, he decided he wasn’t, and said Jackson was eligible for only one hour instead of two. At the hearing, he went over all of the documents and the reason for his decision He also mentioned missing documents, documents that I did not know I needed to submit for review.
He talked for an hour before my sister even had the opportunity to cross. When she did finally get that chance to cross examine the witness, the AG objected to almost every question asked. We were told we couldn’t submit new or updated documents. Since she couldn’t ask any questions and since she wasn’t allowed to submit new evidence, and since it seemed that AG wanted a “win” instead of trying to find a solution, we could see the writing on the wall.
We were going to lose.
I was beyond upset… beyond. People who had never met my son, never watched my son struggle to say his own name at the age of six, made a decision about how much aid he could get based on paperwork. And this court was going to uphold that decision.
Nikki (my sister) could see it coming but then she did something that I will be forever grateful for. She looked beyond her own anger and frustration and instead of letting the fact that we were going to lose take over her entire decision making, she saw the bigger picture.
In that room we had the DDD Speech-Language Pathologist, we had the DDD Medical Director and a represantive from the office of administrative review. My sister looked at this collection of people and instead of getting angry at their choice, she decided to ask the court to withdraw our appeal. That we would accept their original ruling that was based on faulty information, but we wanted to see if there was any way that we could talk to everyone in the room. We wanted to find a solution to the problem so that DDD gets what they need, so Jackson can get what he needs.
My sister waved the white flag of surrender and then graciously asked if they would stay and talk with us about the paperwork, and what we could do better to ensure that this doesn’t happen again in the future. She was great. I was a mess.
As soon as we waved the flag and officially ended the court hearing I left the room. I went to the bathroom and cried. I have always felt that in these moments of grief that it is important that I allow myself to feel the pain fully. To not hold it in. To not be brave. But give myself permission to cry. And I did. Then I regrouped. I pulled myself together and then went into the waiting room because I was not ready to talk to the people who had denied my son coverage. Then that inner voice started to speak to me.
“Michele get off this chair and go back into that room. Set aside your anger and listen. Listen and learn. These people are the gate keepers. They have the answers. Get up, get in there, and ask the right questions.”
It was hard. It was hard to remove that anger and to move into a place of listening and understanding. Once they started to talk to me this is what I began to understand. These people are not bad people. They made a choice based on the evidence we provided. My sister will say it was an incomplete record, but I would say it was shit… sorry. It was shit.
The people from DDD were amazing, helpful, and I genuinely believe that they have Jackson’s best interest at heart, and it was apparent to me that they also wanted to find a solution. Once we were able to talk to each other as human beings, it led to a great exchange of information. They just need better information from us. It needs to be clearer, more in-depth, and encompass the full scope of Jacksons needs.
Much of their decision was based on reports written by my Speech-Language Pathologiest (SLP) who has worked with Jackson since he was 2. Now I could get angry with her and trust me I was, but again I had to ask the right question. This ruling was based on reports she wrote, and they tore them apart. But why? Why didn’t she know how to write these reports properly, what was missing?
When we were able to talk to the SLP for the State he did admit that there is no training given to other SLP’s on how to fill out those forms. My SLP was going off reports of others that her boss gave to her and wasn’t following any guidelines provided by the State. So it wasn’t her fault for not knowing what she didn’t know, there wasn’t a roadmap for her to follow.
I also learned that I should have provided other documents to the court such as, Jacksons current IEP, that I should constantly submit his medical records (wellness visits) and have them apart of his file. Additionally, his pediatrician not just the nurse practitioner, should have filled out the perscription for 2 hours of speech therapy and that prescription needs to be detailed as well.
I learned a lot.
I learned that as a mother, it is up to me to make sure that I not only do my job and provide the correct documentation but that it also has to be my job to check the quarterly reports produced by my son’s therapist and make sure that they are done correctly. So how do I know what to look for? How do I advise his therapist on best practices for filling out those forms? How do I ensure that this won’t happen to us again? How do I ensure that it won’t happen to you?
I asked DDD if they would work with me to to create best practice guidelines. And they were more than willing to help! We are going to create checklists and roadmaps. We are going to try to simplify that information so that it isn’t buried in a 100 page booklet that you will never read, but on a one page PDF that easy to understand and follow.
Winston Churchill said, “All men make mistakes, but only wise men learn from their mistakes.”
I intend to learn from our mistakes. I intend to work with DDD to create roadmaps for mothers so that we know what information and documentation we need to give our service coordinators and that we understand who should be involved with and attend our yearly DDD meetings. I also intend to work with the in house therapists at DDD to create best practices guides for therapists. That way as a mother we can hand these to our therapists and ask them to use them as a guide when filling out paperwork.
People will come and go from our child’s life. We are the constant. We have to be empowered with the right information. We have to know the rules, the roadmaps and the best practices that we need our therapist to follow.
Good can come out of bad. Hopefully what I’ve learned from this experience will help other mothers in the future.
We surrendered this battle, so that we could win the war.
The fight continues but now we have allies.
Allies that are now a part of my son’s army.
You found out early that the whole process for getting the right and enough services for anything through the government or school system requires “exactness of statements, using statistics testing of need” proved with test scores, and reports, often medical coding from a doctor, not assistants,and or a PHD Therapist or Psychologist, and PHD Speech Pathologist through numerous in depth evaluations. This leads you to get the required diagnosis and required services agreement. The only way services can be provided correctly the way you need them to be for your child is when the decision committee “can find no way out to deny them.” This is true straight down the line for our kids right through adulthood services which mine is finishing up with for the most part. I applaud your strength and resolve to work within the system but next time by having everything ready for action with no room for loopholes. When you know what the evaluation committee knows ahead of time, you become a powerhouse that meets them head on, and you can accomplish what you need. When you go in to that meeting you will be stellar and empowered. Rooting for you. PS.I think it is wonderful you are working on that checklist to help other parents along the way, I always tried to do that during my path as well.
As I read your blogs with such intensity, I HAD NO IDEA, all that one has to endure to get the needed help for a child they love so much.
My prayers are with you and may God’s strength guide you and protect you as you trail blaze through the red tape and get answers. I pray that you will persevere because I know others are reading these blogs too and feel as I do. YOU GO GIRL!!
God bless you my sweet cousin!
It’s a marathon, not a sprint. You are an awesome parent with a support system of people who love you and your family. Parents entering this experience will be grateful for your willingness to get up off the chair, to seek answers and to make it easier. Bless you.
You had a great lawyer and followed good advice. It is so hard to lose the battle and move forward to plow the field anew. You’ll have a bigger win.