When it Comes to Autism, All States are Not Created Equal
Posted on February 3, 2011 by C.A. Curie
The Reason Why We Fight
Despite the recent proposals by various states to pass or introduce autism insurance reform, the reality is that most states in the country are still extremely deficient when it comes to providing autism-related funding and services. The lawmakers have realized the error of their ways and are now grandstanding before the media (and everybody else) gets a grip on reality about what has been going on.
One year ago, I left everything in Washington State, including my home and older children, to move to upstate New York to get the best possible services for my four-year-old son with autism. Washington is currently ranked 48th in resources for autism and New York is ranked fifth. The westernmost accommodating states are Wisconsin and Missouri. The rest are in the northeast, and include New York, Pennsylvania, and New Jersey.
Add in a tremendously low cost of living in upstate New York (because of the harsh winters), and you have one of the best places to live for autism services. Families have been migrating to these top states for help for the last ten years and thankfully, they are getting it.
In my opinion, Boone County, Pennsylvania, is the number one place to live, hands down. However, the million-dollar Pocono lifestyle and homes are way out of most families’ budgets. That’s why I came to Onondaga County, New York, where my son is receiving up to a half-million dollars in therapy and services each year.
Australia and the United Kingdom are way ahead of the US in providing proper treatment and therapy to all diagnosed persons with autism. Catching up will be difficult. At the current rate, our Social Security system (and other government programs) will be bankrupt within seven-to-ten years. The estimates of the well drying up in 2037 are incorrect, and lawmakers know it.
Don’t get too exciting when reading the latest headlines about autism "reform" and lofty promises by lawmakers. These rarely trickle down into hands of a child’s immediate needs. In fact, due to the lack of properly trained professionals, it will take years to see any meaningful difference.
I spent fourteen months advocating and battling for services in Washington State. This is a no-tax state, which was part of the problem. After tremendous paperwork, getting advocates involved, and nasty battles, I ended up with 3 days a week, 2 ½ hour early intervention sessions with unprepared teachers. As a result, we had minimal results and non-productive speech. The teacher and speech therapist meant well but lacked the training and skills needed to be effective. I appreciated their efforts, but the reality was that my son was not thriving.
The school district did not want to give my child summer school or an ESY (Extended School Year). This was critical because it’s been proven that without three or more days of a school program and therapy, a child with autism will show regression. As a result, an effective autism school and/or early intervention program will be year-round and not just occur during the regular school year. Study the IDEA (Individuals with Disabilities Education Act) laws and know them before your first IEP (Individualized Education Program) meeting, so you are well-informed about these issues.
What Washington gave me in place of not having a summer program, was a self proclaimed "Autism Therapist." After four sessions into her therapy and personally witnessing her slamming my child into his chair, whiplashing another student, and having zero progress with another, I pulled my child out. She grabbed my arm forcefully as I was leaving with my family, seething with anger and tried to intimidate me saying, “your child is a hard one.” A call to CPS should have been made, but I vowed to focus solely on my son’s healing and not get bogged down in lawsuits or "he-said, she-said" accusations.
Without a doubt, the best programs in Washington pale in comparison to the worst programs in New York. If that were not the case, I wouldn’t be foreclosing on a half-million dollar horse farm, recovering from a divorce or given away most of my things.
My studies and conversations with other parents and personal experiences have led me to the conclusion that the state you are in will define your child’s future.
As stated, lawmakers are continuing to hash things out, but these changes will not make an immediate difference when it comes to hands-on therapy. So if your state does happen to pass laws handing out cash or institute legislative mandates, there is the secondary issue of finding the properly trained persons to address the therapies and services that are being funded.
Don’t believe people just because they are in an administrative or authoritative positions. They are not all bad, but the majority lack the proper knowledge and training. There’s no excuse since the research has been completed and proven.
Your child doesn’t have a lot of time. Moving to a state where resources are available five days a week through a school system should be strongly considered. You need to have access to an agency like Enable, who will bring ABA into your home well after the early intervention period is over.
Forty-percent of non-verbal autistic children will never speak. My son was almost one of them. This high percentage is directly linked to the lack of trained persons and no access to accommodating services in the majority of our states..
I cannot explain the joy I felt when two months of New York-style therapy brought out my son’s full speech at three years old. Now, thanks to the great state of New York and the SPICE program, I can finally hear him tell me and write his likes, dislikes, feeling, and fears.
Most importantly, he hugs me, kisses me and says, “I love you mommy, I really love you, I love you forever and ever!”
Washington State left my son and I with little hope when I was told, “he’s a hard one." In only 9 short months, the services provided by New York caused me to receive daily progress reports and happy handwritten pictures expressing my son’s love for me.
It’s treasures like these that make moving 3,000 miles away, along with countless other sacrifices, all worth it in the end.