Getting Started with Special Needs – Get Your Resources

You are going to be dealing with autism for a very, very long time. Your first task is not to get treatment started (we actually got approved by our insurer pretty quickly for some speech therapy… a topic for another post).

Treatment needs to be “prompt” not “urgent”.

Your first task is to get signed up for all of the resources that you might be eligible for.

Or rather, start the process to get signed up for all of the resources that you might be eligible for.

At best, it is going to take a while.

NOTE: Autismspeaks.org has a good first 100 days with autism document. It is good… rather optimistic from my perspective, but they cover a lot of useful material that I’m not going to go into.

WARNING:

So, 3 days after signing up to get the “first 100 days” document, I get another email from Autismspeaks.

They want me to buy a T-shirt.

A *****ing T-shirt!

A *****ing T-shirt?

… because that is EXACTLY what I want right now.

You’ve been warned.

In the US, this is typically:

  • Your state
  • Your insurer
  • Your school district

You are not actually going to be getting any services at this point, you are not actually signing up for services…

You are just going to be doing a lot of paperwork to get assessed to see if you qualify for resources…

… or rather, whether they are going to say “Yes” right away or not.

Welcome to bureaucracy.

Make copies, save copies.

Fill out the paperwork promptly.

Hand deliver it.

Heck, pick up the blank forms by hand if you can (I wish I’d thought of that).

Be nice. You may be dealing with these people for a long, long time.

Call first. Get a live person. Find out the right place to talk to. Find the right person to talk to. Find the right address to mail everything to. Find out their deadlines to get back to you. If no one is there, call back. Don’t wait. Everyone’s clock starts ticking once they have a form in their hand. Until then…. nothing. If there is an online process, do it. If there is a paper process, do it. Get in the system through every front door you can.

Fill out the forms quickly and completely. You are dealing with bureaucracies. You’ve got to feed the system. Don’t give them any excuse to not respond. Check your work. If you need to provide copies of other material (such as proof of your residence, a copy of your diagnosis), do so. Don’t mess around. Make copies of everything. Keep copies of everything. If you don’t have a scanner or copier, get one. Copy everything you get. Save everything you get. A lot of trees are going to die before you are done.

Hand deliver the forms if possible. Stop by the relevant office.Say “Hi”. Be nice. If you can’t hand deliver it, overnight the package (with proof-of-delivery receipt). If you overnight it, call to see that they received it (don’t trust the proof-of-delivery receipt). The clock doesn’t start until they’ve got the package.

Track the dates hard. Note every date. Track them. If people miss deadlines, follow up promptly. Call. Be a very polite nuisance. Warn people that “you want to know the right dates to expect a response so that you won’t call them before the deadlines”…. because you will if they miss one.

Keep your spouse up to date. This is hard. You aren’t going to see progress for a while. Perhaps a long time. You know you are in trouble when “victory” is filing a form. Welcome to your first victories.

Wait. (where I’m at as I write this). You’ve filed your forms, you’ve made your copies. You’ve set up your filing system (OK, working on setting up your filing system – I promise). Waiting sucks.

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