Tuesday, February 16, 2016

HB 2962, Autism Insurance

Pervasive Parenting
By Kodey Toney

HB 2962, Autism Insurance

With the legislative season underway in Oklahoma there are several bills of interest to me, but one that particularly has my attention. This is something that I think will impact the future of my son, and other families coping with autism. This is why I have brought it to the attention of not only my legislators, but the legislators in my area.

I would like to share a little bit of what I let them know, because I truly feel that House Bill 2962, which will help families receive insurance for the services needed to help their children succeed in life, will be beneficial to the future of our families and Oklahoma as a whole.

I will paraphrase the letter that I sent to the legislators:
At the age of three my son, Konner, was diagnosed with autism. I began advocating for my son and in turn other families in Oklahoma to help find resources.

We receive therapies through our schools such as occupational, speech, and sometimes physical therapies, but the funding there is limited, and the hour or less we receive per week is not enough. So, we seek additional therapies.
The problem is that, because our insurance that we work so hard to pay for through our jobs as educators, does not cover these necessary therapies because insurance companies do not have to provide for autism in the state of Oklahoma. This is also true for Sooner Care recipients.

There are additional therapies that have been scientifically proven to help children with autism, and other related disabilities, improve their quality of life.
Among these is the Applied Behavior Analysis (ABA) therapies that help children with behavior issues, due to their disability, perform better in the classroom, work environment, and in public. However, due to the lack of insurance requirements we don’t have easy access to these treatments.
Autism Speaks only lists thirteen ABA therapist locations in Oklahoma, and those are concentrated in the metro areas. The lack of therapists in this state is due partly to the fact that they cannot bill the insurance companies for their services.

We are one of only five states that are still not seeking autism insurance reform.

Thanks to the therapies that my son is receiving he has reached milestones that we were told he would probably never see. However, he has a long way to go if he wants to lead a happy and productive life. Our goal for Konner is the same as any other parent I suppose.
We want him first and foremost to be happy and healthy. Then we want him to live a life where he is a productive citizen. We want him to be able to be a part of the workforce and give back the way we do.

The insurance that we are seeking can help him with this goal. It can help him cope with his deficits in the language and social skills that it will take for him to complete school, go on to higher education, and eventually hold a job in the workforce.

However, without these therapies he could fall into the cracks that we have seen all too often with children with disabilities. He would become dependent on the state and federal system for funding to help with his disability.

The insurance reform will be a huge step in many areas of the state on several levels. It will help with humanitarian goals by providing a better life for our more than 600,000 citizens who have a disability. More than 200,000 of them are without work.

We could increase our workforce in the future in several ways. One would be to create more jobs with the insurance reform. If you allow this modification you will see an increase in the number pursuing the certification in the state for ABA and other therapies.
This in turn can increase programs in higher education, jobs, revenue, etc.

In the long run, by providing those with autism a way to cope with the symptoms of their disability and learn how to function in a classroom, working, and public environment, then we can help them to become more productive citizens.

In short, we can provide this insurance, and spend a little money now to help create more revenue in the future and a future for our family members, or we can continue to do what we have and pay for disability related services and funding for the rest of their lives.

I am extremely grateful to Rep. Ed Cannaday and Rep. James Lockhart for signing on as co-authors for the bill. It shows their progressive nature in helping families in our area of the state.

I encourage you to contact these and any other member of congress to express your thoughts on this bill.

The Way You Do The Things You Do

Pervasive Parenting

By Kodey Toney

The way you do the things you do


I spent Friday in Oklahoma City with the Oklahoma Developmental Disabilities Council working on the upcoming state plan and going over budgets, among other things. This made me think about a few things. They asked me to fill out a biography for an upcoming change to their website. As I was working on this I started thinking about some things that we have done over the past couple years with the Pervasive Parenting Center. I would like to share some of these things in case many of you were unaware of what we have to offer in this area.

I think much of what we have done started with parent support group meetings. This is something that we started to help families share information, stories, resources, and just have a place to feel like they were “normal”. We try to hold these monthly, and began last year rotating them from each county. During these meetings we do anything from just talking things out and sharing our problems to trainings. In the past we have trained on subjects including care/communication notebooks, autism basics, IEP basics, and people first language.

In March we are working with Developmental Wings, which is another great organization in our area, to provide services for the children with autism during our regular meeting. This will be held in Roland this time, and plan to move around as well. Developmental Wings helps with therapies including art, music, and equestrian for children with disabilities. Check out their website at www.developmentawings.com.

Each month we also hold Sibshops. This is for the siblings of children with autism. This helps them have their day to feel like they are important, which of course they are. They usually have to be drug around to the meetings, therapies, and other assorted appointments. They have to grow up faster than they should. This is a way for them to have a fun day just for them.

We have been working with Special Olympics, and hope to continue that work in the next year. They are a wonderful group of people working with kids to help them become good athletes and great people. It’s an awesome program for kids like Konner who were shunned from playing school sports from the school coaches, but he has people who believe he has potential with the Special Olympics. You can contact Tanna or Randy Weaver on facebook for more information.

We work to provide conferences and trainings in this area including inclusion in the classroom, autism training, and people first language for any school, business, organization, or individual that is willing to listen. These are free. Just contact me for information.

If families are having issues with an IEP, we will work to help advocate for the child. This is anything from just looking at it to see if you are getting things you need, to making sure that the goals are productive for your child. We can also advocate in the IEP meeting if necessary, but try to give you the tools to advocate in the meeting for yourself first.

More than anything we are just here to help give families a place to find what they need. If you need resources we will find them if we don’t already know them. If you need someone to ask for advice we are here. If you just need to talk, we are here too.

I always tell people, I’m just here to help. I’m trying to provide a service I wish I would have had a few years ago when we first found out about Konner’s diagnosis.


You can check our facebook pages and website for dates and times, or just email me at ktoney@pervasiveparentingcenter.org.

Friend Like Me

Pervasive Parenting
By Kodey Toney
Friend Like Me
If you have been on Facebook lately you’ve likely seen an app, meme, survey…I’m not sure what it is, but if you push the button it gives you a little anecdote about your experiences on the app. It says something about how you push the like button, or don’t post pics of your food, etc. At the end it says “Be like Kodey.” These are amusing, but I found a meme related to this app and autism that I had to share, because I feel it sums up the disorder and what is necessary to help those on the spectrum. I would like to share it here, and break it down with my opinion.
Here is what it says, I’ve substituted the name Jim for Konner though:
“This is Konner,
Konner has autism,
Autism is incurable,
Konner will grow into an adult with autism,
With the right support Konner will grow into a fine young man,
Whatever his abilities may be,
Be Konner’s Friend”
I think this is great for parents, professionals, and any advocate to understand.
Let’s start with the fact that Konner has autism. That’s a fact. There is a piece of paper from a professional that states that based on tests and observations. This is something that you have to accept in order to help a person on the spectrum, whether you are a parent, educator, professional, or self-advocate. If you deny this then you are not helping.
Autism is incurable. It is treatable, but there are no cures. You can’t take a magic potion, alter a diet, or take a pill and it all goes away. The person will always have autism. They will find ways to cope with the symptoms, tolerate the issues involved, and have a better life, but it will always be a part of them. I like to think of this as a characteristic.
They will grow into an adult with autism. This is why it is so important to work with them early to get the therapies and supports they need to learn how to tolerate these issues. The faster we do this the better chance they have of being a productive part of society. With this they will grow into fine young people.
This is true no matter what their abilities may be. If they are high-functioning, moderate, classic symptoms, verbal, non-verbal, or limited communication they still can find something they can do to become productive. They just need the supports and people believing in them.
This is why it’s important to be Konner’s, or anyone else on the spectrum’s friend. It is important for people to care enough to take those on the spectrum under their wing, help mentor them, show them the direction they need to go, and just be a friend. We as a society perform better when someone believes in us, and help us.

Cuts Like A Knife

Pervasive Parenting

By Kodey Toney

Cuts Like A Knife

With a $900 million deficit in the Oklahoma budget one of the largest areas to be hit is the education department. This is nothing new, and it will continue to be an issue. While this is not the only area to be cut or affect those with disabilities, it is a vital category that I want to address. This is because it has come to my attention more than twice this past week with questions from parents and educators.
The issue is that administrators all across the state are looking for ways to cut budgets. One Tulsa news station ran a story about Inola Schools reducing their workforce in janitorial and food prep areas. They are working on cutting any of the “lower level” jobs. While these are very important, and any layoffs are a bad situation, the one that perked my ears up was the cut in paraprofessionals in many local schools.
I had a message in my inbox last week from a local parent asking me if they could take her child’s para due to the budget cuts. This gets complicated, but let’s take a look at it for a second.
The short answer is…maybe. Ok, that’s pretty vague and not what most want to hear, but you have to understand a few things first.
1.       If it’s in the Individualized Education Program (IEP) that your child requires a paraprofessional then they cannot cut this without violating the IEP. Don’t forget that this is a binding contract and this would be a violation of the Individuals with Disabilities Education Act (IDEA). If your school has agreed that your child needs someone to assist them throughout the day, and it has been signed off on in the IEP then they cannot retract that, at least not without a meeting to discuss and agree upon with the entire team. Though there is slightly more to this, in a nutshell this is the way the law reads.
2.       Make sure what your IEP says. If it says that the child must have a para for the entire day then that is what they are required to provide. However, if your IEP only states that the child requires a para to help with bathroom breaks and at recess then that is all they have to provide. It is only as specific, or not, as it is stated in that IEP.
3.       If it is not in the IEP, and your child has a general paraprofessional for the classroom that they are in then the school can terminate that service as they see fit.
This of course is not what is needed. The children need as much assistance as they can get throughout the day to help with certain aspects of their education. Don’t forget though that they only need to provide what is necessary. The child needs to learn to be interdependent not dependent on the para. They need to be working to do as much for themselves as possible without assistance, and the para only intervenes when needed.
If I’m looking for a silver lining then there are parts of this that could be a good thing. If it was not in the IEP, and your child loses their aide then this could help them become more independent. After all, as I’ve always said, the job of a paraprofessional is to work themselves out of a job, and make the child less dependent upon assistance.
If you are concerned that this is what I would suggest is checking the IEP to make sure what is specifies as far as a paraprofessional is concerned. If it doesn’t say that it is a full-time position then I would call an IEP meeting and see if you can get it added. The problem is that right now it’s going to be difficult to get the schools to include this if they are trying to cut budgets.
If you need assistance any aspect of this, you need someone to look over the IEP, need someone to advocate in the IEP meeting, or have any questions don’t hesitate to contact me at ktoney@pervasiveparentingcenter.org.

My Shiny Teeth

Pervasive Parenting
By Kodey Toney

My Shiny Teeth

Going to the dentist can be terrifying for anyone. The uncertainty and possibility of pain lurking in the shadows of every exams room is enough to make the biggest man cringe with fear. For a child on the spectrum, or with sensory issues this is turned up a notch or two. 
This week Konner and I made the trek to the dentist to have a cavity taken care of on Wednesday. This wasn't as bad as most would think. In fact at times it was funny. 
Before I get into the story of our visit I want to explain a few things. Konner did very well going this time. He didn't get too anxious, although there was a little fear, as you will see, but it's because we have worked with him over the years. One of the biggest problems with most visits is that uncertainty that I talked about before. So, one of the best things to do is to talk to your child. Walk them through the process the best you can, and let them know step-by-step what will happen. 
I began this step with Konner on the car ride there. This is because we forgot to tell him the night before, which is not a good idea, but as I said he's been going for a while and already has a good idea of what is going to happen. 
So we arrive and as we come in the door I notice Thomas the Train on the television in the waiting room; score! He was happy about that and it put him at ease a little. When we are called back he was asked to lay down. I sensed a little apprehension, so I helped him, but he knocked the hose that fits over your nose for the gas onto the floor. That was okay, but the assistant had to clean it off, so when they put it over his face he caught a huge smell of cleanser and he didn't like that at all. In fact the whole time he was on the table he was upset about the powerful smell. 
He began to look around and asked, "Are there any little jack hammers?" The nurse answered no and then asked, "Where did you hear that from?" He of course answered some cartoon on Facebook. He was reassured that there where no jack hammers.
He then began to give a play-by-play of Thomas playing on the ceiling. The assistant told him he would have to stop talking and close his mouth so he could breathe in the gas and relax.  He then complied and continued his story with his mouth closed. 
He decided to try to talk the entire time the dentist worked on his tooth. 
In all he did very well though, and was ready to head back to school afterward. 
A little preparation will help. Is it fool proof, no. It has taken some time over the years, and lots of preparation.

Dear Friend

Pervasive Parenting
By Kodey Toney

Dear Friend

Dear Diary,
For Christmas Konner received a diary that he asked for and began chronicling his daily life importances. The problem is that he tells about everything that he writes in it. In that same spirit I have decided to write this week's article in diary form. 
I really appreciate that Konner wants to write down his thoughts and keep up with what he feels is important. I just wish that he wouldn't share all of those ideas with his little brother.
By the way, his little brother is your typical brother. Even if Konner didn't tell off on himself, Kruz sneaks into his room and finds it to read. I mean, I'm really proud that he can read so well, but I wish he would leave Konner some privacy. 
However, I'm glad that in many ways they are "typical" siblings. 
Diary, this break has been pretty typical, but there have been a few things that have been a little different. Konner has been very agitated and aggressive in ways. He has been yelling and screaming, and I haven't been able to get things under control. On top of the outbursts he has been having tantrums (not meltdowns), and he has been really whiny lately. I guess this can be expected during Christmas break. After all, his routine is thrown off completely, and his little brother has been annoying him to no end. 
I just hope that it doesn't make going back to school too bad for him, but it probably will. I really hope that his teachers and classmates understand and work with him.

Between A Rock And A Hard Place

Pervasive Parenting 
By Kodey Toney

Between a rock and a hard place

I was reading an article lately that had a list of advice for parents and I thought I would share some of it with you and how it relates to our family.
"Your child will teach you more than you will teach them." These seems to be more true every day of my life. Whether it be patience, tolerance, acceptance, or how to be a better person, I learn something from him all the time. He has taught me more than any textbook or research.
“You have no idea how much potential you both have to exceed your expectations.” Looking back seven years ago I would have never thought I would have been where I am as a father or advocate, and I owe a huge amount of it to Konner. He continues to be my driving force. However, if I had listened to many experts, professionals, and other who were trying to give us advice on Konner he wouldn't be where he is today. We were told so many things that he was not supposed to be able to do, but we didn't listen and kept pushing him. 
“You are not weak when you get angry and upset.” This is one I struggle with daily. I probably sound like a broken record to my regular readers, but I want so badly to be a good father that when I lose my temper and yell, or do things to make the situation worse I feel like I am failing as a dad. You have to understand that it's not easy to raise any child, but especially not one with sensory issues and I stand meltdowns. You will loose your cool, you just have to control yourself the best you can if you expect to control the situation. 
“It’s a lot harder (living with autism) than it looks. It infiltrates every crevice of your life and affects every minute of every hour of every day. It’s right there when you wake up in the morning and doesn’t stop challenging you until bedtime (and doesn’t stop even then). Try as you may you will never get away from it. When you get alone time it will consume you. When you try to sleep it will overtake your brain, and when you think you have control it will prove you wrong every time. 
“You and your child have nothing to be ashamed of.” You both are who you are. You can't change your child, so don't be ashamed. Embrace who they are, and even celebrate if you want to because they are awesome. Everyone else can just live with that. 
These were just a few things that were discussed, but I feel they are very important to remember. You have so much to be happy about. Your child is special, different, quirky, funny, smart, and about a hundred different superlatives roled into one great little package.