Wednesday, May 21, 2014

Julianna, Part 9: Fighting Regional Center, and Finally Winning

Some really neat things happened as a result of Julianna potty training. Obviously, our family dynamic changed dramatically, and Julianna had more confidence in herself. But I also met some key people that helped me on my path to getting services for her. One person was the secretary of the ABA agency we went through. She heard about my situation, and told me about a new center that was advocating for special needs children, for FREE. Every person I came in contact with told me outright that the fact that Julianna wasn't receiving regional center services was a crime, and I had to fight it. I would tell them that I did fight it, three separate times, and nothing came of it. I was tired of going to so much effort for nothing.

But I decided to give this center a call, and met with them so they could review Julianna's IEPs and reports, and see what they had to say. They agreed that Julianna clearly qualified, and said they would advocate for Julianna. So I left that in their hands, and could focus on other speaking out on behalf of Julianna. Another person I met during this time told me about something called the Area Board of Developmental Disabilities, a group of advocates/educators who met reguarly to discuss how special education law was being violated. They were actually looking for people who were having trouble with the regional center, so I thought it couldn't hurt to send them an email with my story.

So glad I did, because the director of this area board wanted me to read my story at an upcoming meeting where the new director of the regional center would be present. Other parents would be doing the same. I felt honored that I would be given this big opportunity to speak out for other parents and make a change. Turns out the regional center's previous director had been caught breaking laws, and the entire center was being audited. So this area board wanted to make sure the new director would hear from people personally who had been affected by this dishonesty. Here is an excerpt of what I said at the meeting:

"I really think that IRC needs to change their policy on who they service--if a school district gives a diagnosis of autism, then service the child--don't go by your own criteria--autism is autism! Just because my daughter wasn't diagnosed until the age of 4 and seems to be doing well in school and is considered high functioning to most does not excuse the fact that she needs these extra services through the IRC to be fully functioning in all areas of life. The IRC provides services that schools simply cannot provide, and I know my daughter has suffered these last 4 years because she was never given their help. I have suffered as well emotionally as a mother and feel like my daughter has not been given the rights she deserves as a child with special needs."

I was very hesitant to go the meeting at all, because it was just two days after Julianna had used the potty for the first time! It was a 6-hour meeting, and I had no idea when I would be speaking. They wanted me to bring Julianna, so the new director could actually see the children that the regional center has been denying, and agreeing to do this meant I would need very close access to a potty. Plus, Joel was not available that morning. Good thing I have wonderful friends who come to my rescue. One of my good friends offered to drive me there, and help keep an eye on Julianna (and Blake? I don't remember) so I could calm my nerves.

The room was full of people. I was able to listen to two people speak before me, and when it was my turn, I knew they were recording each speaker. All I could think was, "please don't cry." I stood up to read my story, and I was only 3 sentences into it before I was crying. But I forged ahead, getting all the words out, and I made sure to look the new director in the eye because I thought she might remember me if I ever applied again. Once I was done, we left, and I was so happy I chose to speak out for other parents. It was one of the most powerful experiences I've ever had.

Julianna's 1st grade year was the best she'd ever had. She was placed in a resource class of children grade 1-5, only 10 children in the class. There was a resource teacher and two aides to assist. She would "mainstream" or attend the general education class for a few hours a day. The progress she made was astounding. I could not be happier with her placement.

But that advocacy center was dragging their feet...after a few months we had gotten nowhere, and I was getting impatient. I had just fought the regional center in person using my own story and voice, but this center was not making anything happen. They were supposed to have more power than me. So far that was not proving to be true. And so once again, I decided to take matters into my own hands. I began researching online ways to get help from regional centers, to get them to listen to you right away. And I came across the phrase "blowing the whistle." I learned that if you use that phrase in the subject of an email, whoever is in charge of that particular organization is obligated to take your request very seriously, and respond as well. So I found out the email addresses and direct phone numbers to the director and all those who served under her, and I took action. In January of 2011 I wrote an email with the subject: "I'm a parent blowing the whistle," and gave my entire history with them.

It worked. I heard back from them the next day. And my email was forwarded to the oh-so-compassionate Mrs. Macon, who had already previously denied Julianna 3 times. She was still over the intake department, amazingly. But this time I wasn't going to let her push me around. This time, I was going to get those services no matter what. My daughter needed more help than she was getting. And I was ready to fight to the death...
I let Mrs. Macon know that the Diagnostic Center where we sent her info (at her request instead of giving us services) finally made a decision, and we got the letter in December. The letter simply said: "Your daughter does not qualify for the Diagnostic Center. She would be better served by the local regional center." I'm sure that was a big slap in the face to her. I let her know that we've been going in circles, getting the run around, for over 3 years now, and enough was enough. I demanded that Julianna be given a new evaluation by a different psychologist. What usually takes months to schedule only took days. This time, the regional center was not going to mess with me. I emailed, I called, I bugged them until they were sick of hearing from me. Though I was able to schedule it in early February of 2011, the date we were given was April 21st, and that was after pulling some major strings for me. I knew I had done all I could do, so I went with it. April 21st could not come soon enough.
Once again, I made sure Julianna was at her worst behavior. And before this appointment, I spent days assembling all her paperwork from doctors, therapists, and schools, into a GIANT binder. The biggest binder that is even made, and it barely held it all. I organized it into categories of medical, school IEPs, school evaluations, my letters and emails, and regional center letters. I wanted to go in there prepared, to show them exactly what this little 7-year-old girl had been through all the years she was denied services. This was Julianna's history, what we had been through together, and it was a lot in just 7 years.
I also want to be clear, so you all understand something very important. The services that regional center provides are NOT covered by insurance. But they are services that are crucial to a child with autism. This is why I was so intent on getting her coverage there. However, in recent years, in a few states, these services, specifically ABA therapy, is often covered by health insurance. Big name insurance finally came around and realized how beneficial ABA is to children with autism. But during those years, it was not covered, and no one could afford to pay out of pocket for it, unless you were rich or going into extreme debt. So what I was fighting for was something Julianna should have been receiving for many years.
Anyway, the evaluation day finally came, and I was never more nervous. I prayed and prayed that Julianna would be assigned a psychologist that would really observe and evaluate correctly, and that I would be able to say the right things to convince her how much she needed more help. As soon as I met the psychologist, I got the best feeling. I knew she cared, and wanted to learn all she could about Julianna. I didn't feel any tension in the room, I was able to be very honest with her about what we had been through, how many times we were denied services. She was impressed by my binder and looked through it carefully. She agreed that Julianna was a very unique child with behaviors that were not just autistic, and she pulled out the big Diagnostic Manual to try to figure out what her movements and symptoms might be classified under. After a long 2-hour assessment, I finally heard the words I had been waiting to hear for over 3 years: Julianna is eligible for regional center services.
The feeling I had in that moment is indescribable. The weight I felt lifted off me, the hope that rushed through me, the absolute joy of knowing that finally, finally, Julianna would get more help, brought me to tears. I wanted to hug this psychologist! All the fighting, emailing, calling, pestering, had paid off. And Julianna's future was now brighter.
But what really surprised me were the new diagnoses that Julianna received that day. She did not qualify under the category of autism; instead her cognitive delay placed her right under the cut-off mark for eligibility, so her main diagnosis was "mild mental retardation." She also brought up some other things that I had never considered: tics or Tourrette's syndrome, stereotypic movement disorder, anxiety disorder, and kept the diagnosis of PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified; this diagnosis has been replaced with a different one in the Diagnostic Manual) Hearing her say all these things was a bit alarming, because now I had even more things to figure out about this girl who has eluded so many doctors over the years. But for now I could rejoice in knowing that my fight with regional center was over.
Onto the next battle...having a special needs child means never being without a battle to fight.

No comments:

Post a Comment