Access to services for kids w/special needs

July 6, 2006

Editor’s Note: I had the privilege of meeting “Sobermom” at the Yearly Kos MotherTalkers’ Caucus. Because she had a son with special needs, I encouraged her to write about this issue and her experiences. Thank you for sharing, Sobermom! -Elisa

I’m typing this from the waiting room while my son is with his occupational therapist.  As I was driving us here I was thinking about the difficulty in accessing appropriate services for kids with special needs.

My nine year old has PDD/Asperger’s Syndrome which is in the autism spectrum.  Some other day I’ll get into the fun that was his infancy.  Today I’m thinking about services.
We’re fortunate in that we have a semi-local (25 miles) occupational therapy agency which specializes in sensory integration issues.  Next Monday he starts a social skills group specifically for kids in the autism spectrum.  It’s also 25 miles away.  Closer to home are OTs and therapists who provide general services that aren’t appropriate for my son.  

His fine motor is okay so OT which isn’t directed toward his sensory issues is a waste.  When he was initially tested in 2004 we took him to the one agency in our state that tested for sensory integration issues.  The eval was $1200 and required 3 visits including a commute during rush hour which took 2 hours.  It wasn’t covered by insurance.  His initial treatment was covered by insurance, for 60 days, and was approved based on the eval we paid for out of pocket.  Fortunately when he started OT in 2005, the more local agency had opened up.  Back then he had OT 3 days a week.  Once the coverage was up he was seen once a week for $150 a session.

Last year he had a neuropsychological evaluation which cost $2500 out of pocket and required 4 sessions including a commute of 1 1/2 hours.  The social skills group is $40 a session, originally out of pocket but now covered by insurance.

It isn’t the money so much, although he wouldn’t be receiving the OT without help from my parents.  It’s how hard it is to find people who specialize in his issues.  And how time consuming it is to get him to and from appointments.  I listen to moms complain about driving their kids to soccer here, there, and everywhere, and I often think about what I would give to be bringing my son to regular activities.

My son is lucky, his parents are “in the field” so we know what the resources are.  We could have had him evaluated locally by the same neuropsychologist who has evaluated some of the kids I see in my office.  But she is great with learning disabilities and attentional issues, but not at all good with nonverbal learning disorder and autism issues.  The same with OT.  Specialization makes all the difference with special needs.

As frustrating as it is for us at times, I’m grateful for the providers who really do help my son to function closer to his potential.  His OT is phenomenal and his group leaders are great as well.  We’re really blessed in that way.  But we’re also blessed because we have health insurance, we have enough money to put gas in the car to drive all of these places, we have a support system which allows us to receive services which we couldn’t afford otherwise, and we know what to ask for to meet his needs.  When I think about how hard it must be for those who aren’t as blessed, well, I can’t even imagine it.  It is so wrong that there is such a divide between children who receive services and those who don’t.  And that the divide is caused by which family one is born into and what their circumstances are at the time.  It’s just wrong.

Time’s up!