Things they don’t tell you: Autism edition

One of the hardest parts of being a parent of an autistic child is navigating the various systems in order to obtain care and therapies.  It is so confusing, it’s a wonder anyone gets anything done at all with autism intervention in the U.S.  For a long time, I’ve thought that a “single-payer” healthcare system, like the ones in Canada or the U.K. or Australia is just plain better than our system, and my experiences as a parent of a special needs kid have only solidified this opinion.

When we got the autism diagnosis, we got a bunch of reading materials like the first 100 days kit for Autism Speaks.  While that’s useful in understanding the diagnosis and general information about types of therapies, it’s not very useful in terms of practical information about how to obtain care and therapy.  That’s because this sort of practical information, while it’s arguably the most important thing you need, varies so much from family to family and location to location.  Still, we got the autism diagnosis at a local specialty center for autism and related disorders.  It would be logical then to give parents something that outlines all the local resources.

What I’d really like to see is a table of information, where each row is a service provider or agency, and the columns include things like: Contact information, services provided, cost, payments and insurance accepted, who they serve, whether there is a waitlist and how long it is, and what requirements need to be met in order to obtain services.  Here’s what a useful table might look like:

Name   Services Cost Payments and

Insurance

Who is served Waitlist? Requirements to

obtain services

State Early Intervention program   Coordinates and pays for therapies, including ABA, ST, OT.  Does not provide services directly. up to $100 monthly, depending on income Takes insurance and private payments Children under age 3 with an ASD diagnosis or with other developmental delays No, but it generally takes ~2 months to begin services obtain a referral (can self-refer), provide medical documentation, meet with service coordinator, possibly evaluations to qualify for services
Easter Seals   Provides in-home and/or in-school ABA and other therapies.  Provides parent training as well. varies Take insurance and accepts funding through various state sources including State Early Intervention program Anyone with a developmental disability, including adults usually no diagnosis of developmental delay or disorder
Autism Specialty Center   Provides evaluations, and various in clinic therapies and services.  Pediatric focused. varies part of University hospital system; takes insurance anyone with Autism or a related developmental disorder.  Pediatric focus. Yes, usually 1-12 months depending on specific service and age of child Must be referred by doctor or school professional.  Cannot self-refer.  Must fill out unbelievable amounts of paperwork before they will even schedule an appointment or put you on a waitlist.

The above example was written quickly by me and written to anonymize our location.  It also lists only 3 of the (so far) 5 service providers/organizations we have dealt with.  It would help me so much to have had something like this 3 weeks ago to answer questions like: OK, I want ABA therapy for my child, but who provides this therapy and where do they provide it?  How can I pay for it?

Yes, a table like this would have to be specific to each state or even each metro area.  But really, it’s not that hard to make, and having this information handy would greatly help overwhelmed families navigate this crazy American system that we have.  I’ve been spending about 10 hours per week for the last 3 weeks just trying to figure all this stuff out (which is a lot when you work full time already and have to care for the autistic toddler) and I still don’t have it all straight.

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