When it Comes to Autism, All States are Not Created Equal
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.