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Commentary: Kansas Autism Legislation Is All for Show

By Jeffrey Nessel

Kansas lawmakers have been patting themselves on the back recently for passing legislation that may someday help families with children on the spectrum pay for ABA therapy.  But by insisting on a one-year “test track” the government of Kansas failed to do what 15 other states are already doing — giving equal treatment to families touched by autism.  (For those who aren’t familiar, the one-year test track is a supposed financial feasibility test that applies only to individuals insured by the state employee health plan. State statute says a “test track” must be done before a mandate will be considered for the entire population, although lawmakers are hard-pressed to provide examples of other treatment policies carried out accordingly.)

This is NOT what Kate’s Law intended to do, yet this is the bone the Legislature tossed to Kansas Coalition for Autism Legislation and their supporters.  For those at KCAL I only have admiration and praise.  Their tireless efforts got the bill as far it could go, and having dealt with some members of the Kansas delegation, I know how difficult that effort was.

However, not all members of the Legislature deserve to be painted by that broad brush.  Two members of the House whom I met, Pat Colloton and Sheryl Spalding, deserve special praise for their compassion and intelligence in understanding what Kate’s Law was about.  Overland Park Republican Sen. Tim Owens was a tireless supporter.  I know there were many others who backed the bill and as the father of a child on the spectrum, I am grateful for their efforts.

Unfortunately the forces opposed to helping ALL families with children on the spectrum got their way and pushed through the  lesser “test-track” bill.  At hearings, Committee Chair, Sen. Ruth Teichman, remarked how she would rather nap instead of working the bill, a feeling I could truly understand.  It had to be extremely tiring leading the charge against families who want equality for children on the autism spectrum.

As for my own senator, John Vratil, I have no doubt he was more disheartened and felt more sadness when his beloved Kansas Jayhawks were knocked out of the NCAA Tournament, than when one of his constituents told him of the financial hardship of trying to pay for ABA therapy for his daughter.  I was in his office when he condescendingly mentioned that if the Kate’s Law people had just listened to him years ago, the test track would already be in force and the data needed to check costs would be available.  When the senator was informed that comparative figures in states that had enacted similar legislation was available in the booklet KCAL had prepared for him, he admitted he hadn’t even looked at the packet of information.  He then insisted Kansas demographics could not be compared to other states, yet he didn’t even know what other states had laws mandating insurance companies cover ABA therapy.  (By the way Senator, that information was available to you in the packet provided by KCAL.)

I have been told that when informed that the amount of children covered under the “test track” would be too small of a sample to get a reading, Senator Vratil seemed somewhat surprised.  Gee, senator do you think that would be something you might want to have checked into before voting on this issue?   What really amazes me about Sen. Vratil though is he is on the payroll of the Blue Valley School District as their counsel.  One would think that with the cost cutting being done by the district this year (though not HIS salary!)  it would give him pause to consider how, if more children are diagnosed and treated earlier, that could lead to saving the district ( and the State of Kansas) money in special needs education costs.  I do have to mention that weeks after my meeting with the senator, when funding for special needs students was being debated in the State Senate, he was quoted in the paper as saying : “Have some compassion and understanding because the people who will be hurt are the kids that need those services the most.”  Senator, where was that compassion and understanding when Kate’s Law was being debated?

Another State senator, Chris Steineger, must also be cited for his complete lack of understanding about this issue.  When the “test track” was being debated in committee, I contacted Sen. Steineger (a Democrat who is running for Secretary of State; incidentally, he only called me back after I left a message mentioning that I was a Democratic committeeman).  I mentioned that the bill really wasn’t what I wanted, that I wanted all families to be able to get this kind of coverage. This led the Senator to rant about how “this country is going broke and everyone wants them to pay for everything.  We’re in trouble here.”  When I pointed out to Steineger that in reality Kate’s Law was projected to save the state money, he admitted he never even opened or read the packet of information provided to him by KCAL.

“That doesn’t surprise me since one of your leading campaign contributors is Blue Cross and Blue Sheild.”

“I don’t like what you are inferring.”

To say the conversation went downhill from there would be an understatement.  At least three times Steineger said he “wasn’t like Dennis Moore” that he didn’t have a “staff to look at every bill.”  Besides the fact that the bill was in HIS committee and had been debated for almost two years, you’d think he’d have more than a passing knowledge of it.

“Kansas doesn’t have the money to fund this.”

“If you looked at the information that was provided to you you’d know that the bill would actually, over the long run, save money for the state.  In fact the only cost would be minimal rise in premiums to other policy holders.  This was shown when a court case in Minnesota  forced your buddies at Blue Cross and Blue Shield to open their books.”

Because this is the first time any sort of autism therapy bill has passed the Kansas Legislature, many see this as a partial or moral victory, and as someone who measures his son’s successes in incremental steps, I can relate to that.  But then I have to ask if equal protection of children in Kansas should have to be delayed by years because of the lack of leadership and courage by our elected officials, and the answer is a resounding NO.

2 Responses to “Commentary: Kansas Autism Legislation Is All for Show”

  1. jeff nessel says:

    Just a quick update…
    The Governor’s media people put out a press release yesterday headlined “GOVERNOR SIGNS LEGISLATION TO INSURE KANSAS CHILDREN WITH AUTISM.” When I called the media office to inform them that was not true, that this was only (their words) a “step” in that direction and thus the headline was at best misleading, they got a little testy.

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The Summer Break: A Catch-22?

By Jeanne Holverstott, M.S.

Question: It seems like summer can be full of pitfalls for my son with Asperger’s — the structure has gone away, and he’s no longer in contact with classmates. He is content to play on the computer all day, but seems to get moody more easily. Should we treat summer vacation as a long break from school-year stress, or what?  

Answer: Summer vacation presents a contradiction: Children with autism spectrum disorders thrive on structure, routine, consistency. Summer vacation throws these principles of ASD parenting and behavior management in flux.

It’s time to search for activities to fill the day that do not involve electronics. You’ll want to set new rules on Wii, DS, Xbox, PS3, computer and television usage. It’s also important to find meaningful opportunities for interaction.
 
Children with ASDs approach summer with mixed emotions. Many parents probably share this ambivalence. Just like the school year, summer vacation is permeated with ups and downs. So, what do we do with all of that time? Take the following into consideration:
 
·         In seeking consistency and routine, we hope to reduce the unknown and the gray that causes anxiety and opens Pandora’s box. We hope to create a microcosm of predictability in a world of dynamic instability.  Change in the ASD world can be bad. Yet, how helpful and how realistic is our static world? Perhaps the static world we strive for unwittingly weakens the coping skills, frustration tolerance, adaptability and resiliency that undergirds functioning in a dynamic world. Summer could be viewed as a litmus test for how our children with ASD react to change that comes yearly.
·         That being said, I’m not encouraging schedules to be thrown out the door. No, only those game systems. Again, I kid. Make money in this recession and sell them at Game Stop. Schedules are helpful, but overbooking your kids with camps, lessons, and trips might also not be the solution.
·         To help promote a healthy schedule that allows for family time and for time working on those interaction skills, consider picking one or two activities in which you can involve yourself as a parent in some capacity. If your child joins a social skills group, exchange numbers with the other family members and have the kids over on the weekend. If you join a “team,” consider recording the interactions (which many other parents do!) so that you can review your child’s interactions with him or her and compare them to other teammates. If you hear the ice cream truck, make it a teachable moment: Walk with your child to buy that bombpop and shape what develops. In the end, paying for a camp, a class, a lesson is not always necessary. Taking the time to set up meaningful interactions (such as play dates) can provide the same benefit.
·         As for those electronics I suggested you sell, they are a necessary evil as a stress reliever, entertainment and an escape. You can put constraints on game play – the length of time and the time of day – but don’t necessarily follow my father’s adage: The sun is out, you should be too. Video games might prove a nice break midday when the heat is at its worst or after an exciting morning.
 
There is a quote you might appreciate at this time: “The longer the summer vacation, the harder the fall.”

Jeanne Holverstott is an autism spectrum specialist who practices at the Responsive Centers in Overland Park. To ask Jeanne a question about autism, send e-mail to editor@spectrumconnection.net, and put “Question” in the subject line.

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DEVELOPING TALENTS

Intervene, Intervene, Intervene

By Kate Duffy

A while back, Toni, the SpectrumConnection editor, asked me to write about how far parents should go to help their teens on the spectrum land a job. Since then, several of our Hot Topics parents have shared their kids’ job search stories with me, and I realized there was no easy answer to her question. For the most part, though, their stories revolved around the kids’ inability to accurately read situations, to remember instructions and to multitask to make a deadline. Looking at that list, it sounds like business as usual on the job for most of us — which is why it is so very important that our kids start learning about the world of work as soon as they can.

That’s why the short answer to Toni’s question is this: do what you need to do.
And don’t do it alone.
Team up with the people in your life to introduce your teen to the world of work. When you get burned out – and you will – you’ll have reinforcements to soldier on to do the hard work of teaching your kid that he has to work and that not everyone is as fascinated with Pokemon, fighter planes, railroad time schedules as he is. You want your teen to join the outside world in a safe, organized manner, so bring in those folks you think would be good role models and champions for your teen.

How involved should you and your team become with your kid’s job search? There is no one right answer, but remember that our kids are generally younger than their chronological age, so that a 16 year old on the spectrum is more like an 11 or 12 year old emotionally.

The end goal is for your teen to get some work experience and to be out in the world, so he understands more about the way the world operates. Given that, it’s not as important how your teen gets a job, just that he has one.

For many, the first job is sacking groceries. So you definitely want to know your neighborhood grocery store manager. You’ll want to talk to the manager before your teen does, letting him or her know about your teen’s strengths and problems. In addition, you’ll want to let the manager know something about autism, especially how prevalent it is, how it affects families throughout the community. By hiring your teen, tell the manager, the store is helping the autism community, which is loyal to supportive businesses.

Do you need to let your teen know about all your behind-the-scene maneuvering? No, you don’t, and it’s better if you don’t. Each kid is different, and so you have to tailor the approach to the kid. For instance, both of my sons are on the spectrum, but they are very different from each other temperamentally. With my oldest son, Nick, who has a lot of anxiety, I frequently have had to go around his back to get him to try new things. That’s how he started playing chess, which he loves, and is a skill he has made money from for a number of years.

Playing chess on a team and then being the team’s assistant coach for three years was a great experience for Nick. Not only was his chess coach a wonderful mentor for him, he also taught Nick how to be a leader and supervisor. For three years, til he got a paying job as an assistant chess coach, Nick worked with Mr. Cooper and learned the important workplace skills of showing up on time, conversing politely even when you don’t feel like it, and managing others – in this case, kindergartners to 8th graders, not a particularly easy workforce.

When he was 14, he also worked for my friend Necia, building her small business a data base of clients and contacts. Three afternoons a week that summer, he walked to her home-based business a half mile away and got to work. What he didn’t know, though, was that I had asked Necia to let him work for her because I knew she would be a good mentor for him, that he would learn about the world in a safe, organized way with her.

Don’t feel badly about intervening in your teen’s vocational life. There is a lot of competition for jobs right now, and our kids need to be part of a team – even if they don’t think they do. Sign them up for Vocational Rehabilitation services too because the VR counselors will then be a part of your team, which gives you a bit of a breather. Remember, the type of skills it takes to get a job do not come naturally to our teens. That’s why the unemployment and underemployment rate for people on the spectrum is about 92 percent.

So get your team together and remember you are not alone. There are lots of us out there doing behind the scenes coaching with our kids. Just keep the end goal in mind and plug away.

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