The process of getting my son approved for services has been an uphill battle and I am sure that most mothers raising differently abled children have their own stories. This is mine and this is Jacksons.
When Jackson received his diagnosis I began the process of getting him services. The first thing I needed to do was to get him filed as a person with a disability at the Federal level with DDD (Department of Developmental Disabilities) and then to apply for AHCCCS (Arizona’s medical assistance program) so that he could get money for therapy from the state.
DDD went swimmingly. We got approved without any issues. Then came AHCCCS. This approval process is comprised of two components: a telephone call to check that he is financially eligible, and an in home interview. Step 1- no problem. Step two- a bloody nightmare.
Right from the start my interviewer had a negative attitude, saying things like “I don’t know why you are applying. No one really gets approved.” I couldn’t believe it. My son was 3, non-verbal, spinning in circling, and getting physical with my husband and I, and before she even did the interview she was basically telling us we weren’t getting approved.
When the day of the interview came I had my sister come over to watch Jackson for me. For those who have never gone through this process let me tell you that it is depressing. You are basically sitting there while someone asks you question after question about your son and where he is developmentally.
At 3 years of age this meant about eighty questions. Eighty questions. To most of these questions you answer no, because your child hasn’t reached that milestone. Each time you say no you realize more and more how far behind your child is. With each no you grow angrier with yourself for not noticing sooner just how far behind your child is. With each no you sink father into a depressive state because you are scared about where your child is, you are unsure if you can lift them up, and you don’t know if you’ll get the help you’ll need to do it.
All of this is happening and it is happening in front of a person who doesn’t seem to appreciate that it is happening, and seems hell bent on making sure you aren’t approved.
One month after the interview was over I got an answer. Jackson was not qualified. Not only that but because of this happened right before he turned 4 he would not be qualified to receive ECM, which is a state paid for therapy that would have given him 30+ hours of therapy a week.
I was beyond frustrated and wrote demanding my sons file to see how this person scored the questions that I answered. An example of what that paper looks like is below.
She changed the answers.
She changed 18 answers.
18!
But I had no proof. I couldn’t prove that she did this. All I could do is file a complaint and then sign up to try again with a different interviewer.
After this heartbreaking result I attended SARRCS Jumpstart class. At this class I learned the following and if you are a parent going through this process please, please do the same:
- If you can arrange for someone to babysit your child at another location you should. The interviewer needs to see your child but that it is. If the interviewer is present they may change your answers based on what they see your child do while they are in your home.
- If you live in a “one-party consent” state you can record the interview without getting permission from the person doing the interview. If you live in a two party state you still might want to record after getting permission. (http://www.dmlp.org/legal-guide/recording-phone-calls-and-conversations)
- All of the forms the interviewer is filling out are apart of your child’s medical history and so legally you are entitled to see them, and I would also suggest making copies of them before the person leaves.
- If your child does not do the thing described in the question 100% of the time the answer is NO.
- If your child’s disability stops them from doing what is described in the question like a typical child does then the answer is NO.
- Be honest with the interviewer and be honest with yourself about what your child’s abilities are. From personal experience when I went through this I could feel myself wanting to say he was capable of more things then he was, because saying no over and over again was depressing. But be honest: with them, and with yourself.
The second time around I did all of these steps and Jackson qualified with flying colors. He needed help so desperately and following these steps helped ensure that he got what he needed.
But of course that’s not the end of the story. Last year we got approved for my non-verbal 5 year old to receive two hours of speech therapy instead of the one hour he had been getting. After six months of him getting 2 hours of therapy it was abruptly canceled. Apparently the paperwork wasn’t filed correctly. The State claimed they didn’t have a Dr. script stating that Jackson needed two hours of speech therapy (they did) and they didn’t have enough proof that he needed the two hours (they did) so they pushed him back to 1 hour a week.
We appealed, and got denied.
Today we go to court.
We continue to fight for his right to services.
The battle rages on and so do we.
As usual your story is compelling and heartbreaking! I’m so sorry you have to go through this. My heart and prayers are with you. You are a warrior and an advocate to all those Mommy’s and Daddy’s who need a voice.
GRR! My heart is pounding at the injustice you described. Why have we, as a country, put caseworkers in the position of licensed professionals?! This cannot stand.
And, is this new? When Timothy, now age 19, was diagnosed with autism 16 years ago, it was through the public school district. They were running a “child find” screening program. It was recommended to me by Tim’s daycare staff after they saw him flapping. A licensed psychologist diagnosed him after long hours of bubble-answered surveys and interviews with multiple evaluators. The public school began services immediately, pulling him into Pre-Kindergarten and working that ABA magic. They even talked me into letting him ride the school bus with “curb to curb” assistance. I still had to ride along the first day to get comfortable with it! But Timmy LOVED the bus!!! He still watches youtube videos of kids getting on the school bus. Anyway, by 2nd grade, he could read and write and do math. (He fell behind again later, but that’s a different story.)
For benefits such as Medical Coverage and Respite Care, I applied directly with AHCCCS as recommended by Timmy’s Pre-K teacher. The Federal government only funded the coverage back in those days, not determined eligibility. The caseworker came out and met Timmy and filled out all of the enrollment paperwork with us. There was never a question of eligibility. We still had to have that financial phone call, but the questions were all based on Timmy’s own finances, not his parents’ or household’s.
So maybe the public school district can help things along for you. If that doesn’t help, maybe a charter school can offer guidance. I’ve also seen an agency called AzEIP (“A-zip”) Arizona’s Early Intervention Program.
But the emotional implications of this on a Mom’s psyche are almost too much to bear. What fresh new hell is this that we have to fight for our children’s DISability?! I get what you mean about it being depressing. The LAST thing we want is for our kids to be lagging behind developmentally. Yet we’re barraged with question after question of sobering, heartbreaking or even dream-crushing realizations as we answer them. And as much as our tendency is to defend our kids and paint the issues with an optimistic hue, we are forced to do just the opposite. We have to face up to every short coming, discuss it at length and project its down-stream implications in order to hope to convince some bureaucrat that services are justified.
I think sending your son to a sitter while the rest of the meeting commences is a great idea. Not only to avoid misunderstandings of the caseworker that your son doesn’t need special training, but also so your son doesn’t overhear you expounding on his short comings. We don’t want him getting the wrong idea either!!
I’m so glad to see you fighting for him.
Go get ’em, Mom!!!