Just a change in app functionality can show a different picture. What my son’s letter tracing looks like for words without the app correcting the lines for him as he seeks to improve his motor planning and fine motor skills. Photos by Ariana

Our son has now been without PT or OT services for two months. Yesterday I had a conversation with a representative from UMR in our ongoing discussions about this matter, which has been escalated to their OSM. This rep said he knew I had been “put out” by the situation.

No, I wouldn’t describe myself as having been “put out.”

I wonder, did the insurance company expect me to step in and provide these services to him myself for free? Maybe once upon a time that would have happened, but not in this economy. Not with me already working a full time job with him in the school as I recover from spinal surgery. What has happened is that Tony has been going without medically necessary therapy supports as we’ve spent weeks working through discussions on the different reasons they have offered in the past two months for denying coverage for those services- and in addition to the lost time practicing skills with a trained therapy provider, we’ve seen behavioral regressions as he’s struggled to regulate his emotions after loosing two therapists he’s been working with for so many years at the same time.

Before the parents as paid caregiver program was started for habilitation therapy by DDD, I had two choices: I could do the 30 hours of habilitation therapy we were unable to find a provider for myself with him without getting paid or he could go without. He still needed those services, and having the foresight to recognize he would need an inpatient facility without them, I did them for free.

I am currently working with Tony to teach him how to use an electric shaver in habilitation (he’s already getting facial hair at just 12 years old). He’s recently finally mastered putting on jackets with snaps and getting all of the snaps fastened, and we’re continuing to work on sunglasses tolerance so that if he needs glasses, he’ll be able to tolerate wearing them and do so safely.

He still qualified for the habilitation therapy services we were unable to use before the parents as paid caregiver program was launched in Arizona. If a therapist could have been found, he would have been utilizing those resources and DDD would have been paying someone to provide them…therefore, money should have been allocated for those needs that just wasn’t being used because there wasn’t an available therapist in the work force, right? Other states have been allowing the parents to be paid to do this therapy type before our state decided to offer it in the pandemic, I am assuming for these types of reasons, as a means to make sure the needs of disabled individuals are fully met. Then why is it controversial in our state legislature that parents be paid to be providers for their children when a provider can’t be found because there aren’t enough working to meet the need?

Could it be that legislators are expecting parents to once again to step in and do this for free?

That won’t be happening this time around, not in this economy. I don’t know anybody who has one spouse making enough money that they can afford to have the other parent stay home and do that for free right now. We certainly can’t in this family anymore. And so are legislators prepared to ask the tax payers to pay for inpatient facilities and these therapies which will still be mandated by law and easier to staff in a facility?

Working to teach Tony how to turn clothes inside out using chaining and hand over hand techniques in habilitation therapy. This process could take many months before he fully learns and can independently do this skill for himself. He has to be able to feel what the motion will be like and have hand-over-hand support gradually faded to learn physical motions. Tasks are broken down into smaller pieces that are gradually added upon as he learns first one piece and then the next of the skill. I have also used chaining with fading of hand-over-hand support for teaching shaving after first having had to build sensory tolerance to the shaver being on and rubbing across his face.

This is far more than being put out. It’s a full time job worth of additional needs that an average family wouldn’t be facing. I’m already working one full time job with him in the school system, and I already haven’t been able to fill most of his therapy hours for habilitation on top of that for the past several months because of my own medical needs at this time.

I’m not an OT. I’m not a PT. I can pretend to be, but in reality I’m definitely not either one of those things, which can easily be verified by checking what degree I do have versus which ones I don’t. Hab therapy doesn’t legally require nearly the level of specialization or training (though it can be argued that would benefit disabled individuals more, I see it as being unlikely as it would also increase the amount hab therapists needed to be paid to provide this service), so I can see a clear avenue for parents to continue in that role. But trying to fill in for therapists that have a masters degree? A doctorate? That’s not putting anybody out, it’s putting disabled individuals at risk of falling further behind developmentally. Of not gaining necessary support learning activities of daily living.

So no, I’m not put out. I’m heartbroken that this is a snapshot of healthcare for the developmentally disabled in our country.