Yesterday the wife got a call from the folks from the County.
Nick’s funding has arrived, so they’re going to call our preferred therapy provider to get the ball rolling. We also received a letter from Nick’s new Early Childhood teacher at his school, so it’s kinda funny how things are all coming together at the same time.
Can I just say how much of a relief it is to know that things are finally falling into place?
thias over at Pundit Nation wrote a great article on the Wisconsin Manufacturers and Commerce
(WMC) trade association’s opposition to Wisconsin Senate Bill 178, which would mandate that insurance companies in Wisconsin provide coverage for treatment and therapy for children with autism. I know that as the parent of an autistic child I’m incredibly biased in my support of SB178, but I simply cannot understand how anyone with any sense of compassion, empathy, or decency could be opposed to providing increased coverage for children affected by autism and other related disorders.
Depending on the severity of their case, children affected by autism and related spectrum disorders can have varying levels of ability to function, and likewise their potential for improvement is equally varied. For children like my son Nick - who’s fortunate to have a very mild case of autism - the potential for significant and lasting improvement is tremendous, so long as intervention is done as early as possible. My wife, Nick, and I have waited just over twelve months for the therapy Nick needs, and that’s even given the fact that I’m a state employee, and therefore have pretty darn good health insurance. We’ve had to jump through innumerable hoops when it comes to applying for Medicaid, and then came the waiting.
I’ve written more than once about my frustrations when it came to our wait for Nick’s therapy, and I can only hope lawmakers in Madison -regardless of political affiliation - will come together and do the right thing in passing SB178 into law. Providing more resources for diagnosis, intervention, research and therapy for children affected by autism and related spectrum disorders is the right thing to do, not just from a moral standpoint, but from a dollars and cents standpoint. I know the WMC is arguing it would be too expensive for insurance companies in Wisconsin to have to provide coverage for autism and related spectrum disorders - and the therapy is expensive, running into the tens of thousands of dollars per year - but when I hear that argument I’m reminded of the old saying, “An ounce of prevention is better than a pound of cure.” Any money spent now on autism intervention and therapy is going to prevent even more money being spent in the future to help take care of individuals who may not be able to function in society because they didn’t have the opportunity for a timely intervention and therapy.
During my scan of the interwebs, I happened to come across one article and one news brief related to autism that I felt were worth sharing here.
The first is a news brief from Greater Milwaukee Online discussing Governor Jim Doyle’s plan to be part of a rally Tuesday in Milwaukee with 200 autistic children, their families, teachers, health care providers and others who work with those with autism. The rally is in support of a measure currently under consideration in the State Senate that would mandate health insurance companies provide coverage for autism treatment. Currently, autism is classified as an emotional disorder by insurance companies, as opposed to being classified as a neurological medical condition. This provides health insurance companies with a convenient excuse to avoid having to pay for autism treatment, which in most cases can total tens of thousands of dollars a year.
The refusal by insurance companies to provide coverage for autism treatment means that even folks who have health insurance are forced to rely on Medicaid to provide autism treatment. Having to rely on Medicaid means having to deal with the unimaginably long waiting lists to get such treatment, and I fail to understand why I should have to wait over 11 months to get my son the help he needs simply because my insurance company wants to save a few bucks. I know I’m being selfish because my son’s affected by autism, but I fail to understand why I pay health insurance premiums only to have my health insurance provider tell me, “No Thanks” when it comes to helping get my son the help he so desperately needs. I think it’s an absolute travesty that someone with health insurance should have to rely on public assistance to get help for their child, and this situation is a perfect example of why we need comprehensive health care reform here in America.
The second article I came across today happened to be on Time.com. The article outlines a new study due to be released soon that contends that autism may be caused by watching too much television at a tender age. Now I don’t know how much stock to put in the results of the study, simply because the study itself didn’t actually measure the amount of television being watched by children; it merely looked for a connection between autistic children, weather patterns, and a cable television hookup in the home. I’m certainly no expert on autism, but I tend to believe there’s no one easy answer as to what causes autism, or why there’s been such an explosion of diagnosed autism cases.
This is a very personal entry, so please bear with me.
I know I’ve done my fair share of complaining lately about my frustration with how long it’s taken for my son Nick to get approved for Medicaid so he can finally get the therapy he needs, but it looks like my complaining days are over - at least for now. All it took was a check of today’s mail for all the prayers of my wife and I to be answered, because we finally got the letter from the County that we’ve been waiting for. To summarize the letter, Nick’s been moved to the top of the list for autism treatment, pending verification of some minor details on our part. We’ve already provided all the details that were necessary, and the return letter is sitting on the kitchen table waiting for me to mail it tomorrow.
Words really can’t adequately describe how I’m feeling right now - they really can’t. This day has been a long time coming, and while I know there’s probably a little more waiting yet to be done, I can finally see the light at the end of the tunnel. We finally have hope that Nick’s going to get the help he needs, and that’s a great thing. I love my son, and I’m so happy for him right now.
I’m glad to see the South Milwaukee School Board recognizes the need for a full-time position in the district’s early childhood program. The EC program at Blakewood School seeks to better prepare children with autism before they reach school age, in hopes that the children can be “mainstreamed” into regular classes. According to the article, since the 2003-04 school year, the school district has gone from seven students recognized with autism spectrum disorders to 22 projected for the coming year. It’s obvious there’s a need for a full-time position, and I’m so pleased to see the School Board taking appropriate action to address the issue. What really amazes me is the fact that the School Board obviously did their research on the issue, with board President Brett Briesemeister saying, “We try to find kids who need help, as early intervention will help smooth the transition. If we catch kids early, they’re better off for the 12 years they are with us.”
It’s no secret early intervention is the key to success for children with autism, and I’m glad the folks on the School Board of South Milwaukee recognize that fact.
I came across an interesting article on the long wait to get children with autism therapy in the MJS. According to the article, “[h]undreds of children with autism aren’t getting the therapeutic aid many medical experts say represents their best hope of attaining a normal life.” As the parent of an autistic four year-old, I can speak firsthand about the long wait for therapy. Nick was first diagnosed as autistic over a year ago, and despite completing and submitting the Medicaid paperwork right away, we’re still on the waiting list for Medicaid. As a result, Nick has to go without the therapy that everyone agrees would be so beneficial to his continued development. In fact, here’s an interesting quote from the MJS article:
Although there is no known cure for autism spectrum disorders, or developmental disorders characterized by impairments of social functioning and both verbal and non-verbal communication, studies show that some children with autism are able to achieve near-normal functioning through a rigorous combination of speech, occupational and physical therapies.
What’s so frustrating for Patti and I is the fact that we both know Nick would would make so much progress if just given the right chances. Nick’s incredibly bright, and pretty much every “expert” - teachers, doctors, etc. - who have interacted with him have agreed his is a very mild case of autism, which is obviously a good thing, but it also serves to add to our frustration. As a parent, I just want the best for my son, and that includes the best possible treatment to help him deal with his autism. I wish I could afford the $40,000 per year for the therapy Nick needs, but I can’t, and that kills me.
I happened to be surfing the interwebs and came across an interesting article on autism. While the article doesn’t really contain any groundbreaking news or insights, it did contain a couple of statistics and quotes that I thought folks might be interested in.
Speaking at the Fordham Graduate School of Education’s fifth annual Early Childhood Conference on April 27, Cecelia McCarton, M.D., said that the Centers for Disease Control and Prevention now estimate the prevalence of autism among American children at 1 in 150.
Think about that for a second…1 in 150 children in America have some form of autism. If autism continues to be diagnosed at these rates, millions upon millions of Americans will be directly affected by autism, not to mention the millions of family members who will be impacted by a diagnosis of autism in a loved one. No one really knows for sure what causes autism - though there’s plenty of speculation. Genetics, environment, diet, immunizations - all have been speculated to be possible causes ot autism, but there hasn’t been much research into identifying which one (or combination) of those factors contribute to autism.
More from the article:
Autism is a particularly difficult disorder to treat, McCarton said, because of its pervasive nature. Unlike disorders that affect only motor skills or speech and language, she said, autism “cuts across every single developmental area.”
As the parent of an autistic child, I can say that this is what’s most maddening about autism - it’s not just confined to one specific developmental area, so progress is slow in most cases. Now we’re blessed that Nick’s autism is relatively mild, so his progress is steady and tangible, but there’s always the possibility that his progress could slow or even regress. While I’m encouraged by the progress that’s been made in increasing autism awareness among Americans, I recognize we still have a long way to go. Nick was diagnosed as autistic at two and a half years old, and we’re still waiting to start receiving the Medicaid he needs to pay for the intensive therapy he needs. Despite the long wait, I still consider our family to be lucky. We’re lucky to live in a state that’s more progressive than most when it comes to assisting children with autism, and we’re lucky to live in a state where our elected officials recognize this growing problem.
Edit: After writing this entry, I decided I’d write a letter to my State Senator about Senate Bill 178, which would mandate that all insurance companies that provide health insurance to state employees have to provide coverage for autism and related spectrum disorders. I’ve never been much of a letter writer, but I think this could be the start of something…
As some of you might know, my son Nick is autistic. While Nick’s case is certainly more mild than most, he still has his struggles. I know a lot of folks don’t really know a lot about autism, so I thought I’d post a link to a video Patti happened to run across during her travels across the World Wide Web. Take a look, and please share your thoughts (if there’s anyone actually reading)