Saturday, October 19, 2013

How Autism Impacts Minorities

Dr. Sanjay Gupta and Everyday Health explores how Minorities are disproportionally impacted by the rising autism rates. With less access, it could drive up healthcare costs for all in the long run.

Oh...and I'm also in the video.

You can read the article - Autism Strikes Some Families Harder Than Others - on Everyday Health.

Just to clarify some things in the video:

* Norrin was still getting home base (and center base) services from a SEIT (Special Education Itinerant Teacher) between 3 and 5 years old through CPSE (Center of Preschool Special Education). Unlike like our Early Intervention experience where we got really lucky with an amazing therapist, we went through 6 SEITS in 2 years before hitting the jackpot with a really great person. One SEIT quit after 3 days because of parking (she was used to visiting homes, where she could park in a driveway) and another SEIT told me, "my husband has concerns about me coming to this neighborhood." One agency dropped me after I expressed concerns/complaints about a SEIT.       

* Norrin was placed inappropriately during his kindergarten year. That was the year I had to sue the Department of Education because the school failed to provide an Occupational Therapist. After 8 weeks of paying out of pocket (totaling $1250.00), I was given a waiver letter to continue outside OT services and no longer required to pay out of pocket. The OT was able to bill the Department of Education. I sued the DOE for full reimbursement for the money I spent on OT and later that year, I had to sue again to have Norrin removed from the school

* For the last 2 years we've been paying out of pocket for ABA therapy at home (after school) from an agency called Center for Autism and Related Disorders. We use our medical insurance to pay for this therapy. I am very lucky to have a job with really good health insurance coverage (we have an autism advocate that helps file medical paperwork) and thanks to the Affordable Care Act, I live in a state with autism coverage.    

* Over the last five years, I've read many books that were helpful and inspiring. However, they are predominantly written by white, upper middle class women who were able to either move, hire an attorney and/or quit their careers to stay home with their children. These were not options for me. And reading these books in the beginning, I felt as if Norrin would never be able to "get better" since I could do any of the things I was reading about. I now know better.   

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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.