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Navigating the ADHD Provider System

Help navigating the health care system for children with ADHD, and financing care and therapy.

I’m no expert on services for kids with ADHD.

As I wrote once before, even though I worked in mental health for 16 years before jumping ship and moving to Library Land, I find it hard to navigate “The System.” I trust and depend upon our case manager and service providers for advice, and just sign on the dotted line. Make that plural: lines. Dozens of them! And then I just say “thank you!”

We live in Iowa, and the services Natalie receives are paid for by a Children’s Mental Health Waiver. I think the Waiver is Iowa’s method for administering certain Medicaid dollars from the federal government.

As I understand it, Iowa’s CMH Waiver is only about 3 years old. Anything that new could use a little tweaking, right? Time and again, since Nat’s been on the waiver, I’ve found myself dying to provide a little feedback; do a little advocating.

Okay, here’s what I really mean. I want to ask, “What the HELL are you thinking?” Problem is, I can’t figure out whom to ask!

The first battle I fought had me making phone calls and asking the age-old consumer complaint question: “Who’s your supervisor?” Then, “Who’s your supervisor’s supervisor?”

The issue was whether or not Natalie qualified for the Waiver based on a diagnosis of ADHD made by our Pediatrician. The waiver says that the diagnosis has to be made by a Licensed Mental Health Professional, and since a pediatrician’s licensure doesn’t involve working under the supervision of a LMHP, their expertise doesn’t mean shit. (Excuse me, I guess I’m still angry!)

Our pediatrician is on the faculty of well-respected medical school, and travels around the state doing clinics to treat kids with ADHD. It doesn’t get any better than that, folks. But that wasn’t good enough! It was a letter from a Master’s level therapist who saw Nat maybe 3 times that did the trick.

Don’t even get me started on Nat’s respite services — the stories I could tell!

My latest gripe relates to the fact that although having ADHD is what qualifies Nat for Waiver services, the services can’t help with one of the biggest problem areas kids with ADHD face-organizing. Isn’t that ironic? We can only work on touchy-feely issues, not practical ones. Organizing isn’t considered a “coping skill.”

I’d argue that it is; that for a kid with ADHD, learning from an early age to develop, and follow, systems to succeed at anything that requires organization is not just a coping skill, it’s THE coping skill. At Natalie’s age, her main “jobs” are to play and to learn in school. In order to succeed at playing, she needs to be able to find her toys. In order to learn in school, she needs to be able to find clean clothes to wear, find and pack her backpack, get papers home to Mom, and do homework. All require organization.

I do the best I can to create an environment where she can succeed. I paid big bucks to work with a professional organizer. I bought a locker for Nat’s coat, shoes, and backpack. I bought plastic bins, shelves, labels. I’ve cleaned up and re-organized Nat’s room a million times.

Natalie is old enough now to start using the tools I’ve provided — but I NEED HELP teaching her to how to do it! It’s endless. Overwhelming. Exhausting. Constant.

Advocating at the State level would take time and energy, and I use up my quota for both just getting through each day.

The service providers we work with don’t call themselves ADHD Coaches. I don’t know — but I imagine — that ADHD Coaches help with organizing. Do you employ an ADHD Coach, or another service provider to help your child learn to organize?

How is that ADHD service financed? Is that service paid for by insurance, a government program, or privately?

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