Much of my time feels like it’s not really my own right now- paid or unpaid- so I’m going to keep my words and explanations here as stripped down as possible.. A question could be posed after reading last week’s post: why would being a temporary direct care worker covering our son’s habilitation hours increase the amount of therapy work I personally need to do with him?
The quickest answer is Article 9, which is a law in Arizona that governs what kinds of therapeutic techniques can be used with individuals with developmental disabilities and under what circumstances. Under Article 9 for example, when a habilitative therapist being paid by DDD is working with our son and he tries to run in front of a car, they are allowed to say “stop” or offer him a reward to change his action, but they cannot physically block him. Eloping is a common behavior with conditions that come with impaired impulse control, such as our son’s Autism, ADHD, Sotos Syndrome, and FASD. Our kiddo also has heavily impaired risk assessment that is very slowly improving, but is still well below what you would expect to see for a child a quarter of his age.
I am sure everybody here agrees that somebody needs to physically block or stop Tony from running in front of a car if that’s what he’s trying to do. And up until very recently, he wouldn’t respond to a verbal “stop” in any eloping situation for anybody asking him to, whether it would have resulted in physical harm to him or not. Obviously we can’t stick with just a “stop” under the circumstances when a moving car is involved.
Practicing hand holding on streets with more traffic 
We also are working on teaching him to request permission before sitting on the sidewalk, important in the summer
Now, there is a process of getting that kind of physical blocking approved through a review committee at DDD that involves continued, ongoing reviews that this type of technique is necessary and obtaining a therapist extra certifications and training to provide that level of support…which I am sure also requires said therapist to be paid more. I was personally never approached by either DDD or Tony’s clinical supervision team about going through this process for him, I was simply just told some years back that clinical supervision would not approve for anybody to work in public with Tony without me until he could respond with 100% compliance to a verbal “stop” from anybody.
And I will tell you, I have absolutely always agreed with that decision regardless of what kind of training a therapist has. I would not ever want to make anyone else responsible for that. So I have been the designated blocker for all activities that require that level of support. But, because of Article 9, even though I am Tony’s mom, if I am clocked in as the temporary habilitative provider, I can’t block…so Andy has to come along, or I have to not be clocked in and doing these therapies by myself.
Andy ready to block street side if needed 
Tony often wants to run towards sprinklers or broken drip heads that spray out more water
So unpaid by DDD and doing community safety by myself is what I end up doing most of the week right now. Consistent community safety practice is crucial to helping our little man gain skills to function safely anywhere, and right now with the temperatures lowering, we’re doing about four hours a day of this therapy program. I have long said this privately, but the bald truth here is that it won’t matter what Tony knows how to do if he can’t function safely enough in public for people to give him the opportunity to do it.
And while much of this practice would have been done with Emily during hab, I, in covering those hours most days, can’t clock in and use the hab hours because Andy isn’t available to provide blocking support. I also can’t give Tony his prescribed medications when clocked in, so I have to clock out in the afternoon when he needs his ADHD medication.
What we have been seeing is a slow emergence of willingness to stop during eloping for me when I call out a verbal request, that on good days can be as high as 75% of requests complied with. Obviously, we can’t test this out with an attempted run into the street right now, but are working on it when he tries to run towards less potentially dangerous areas. And, sometimes we have to block when he’s trying to go into someone’s yard also, because people can get pretty grumpy if an impulse control challenged kiddo messes with their stuff (and rightfully so).
We have been told that soon DDD will be ending the temporary direct care worker program, that extra federal funding allowed them to offer this option during the pandemic only and that this extra funding expires soon. I personally give the opinion that I think this is an excuse…because if an individual meets medical necessity for habilitation and looses their therapist under any circumstances, that need and the ability to pay a parent to fill in while another therapist can be found should be there regardless…right?
Unless of course, the state legislature isn’t budgeting enough money annually to pay a competitive wage for DDD funded therapists or to meet the actual therapy needs of all the developmentally disabled individuals they serve.
So, although I and many other parents recently recommended a continuation of this program due to ongoing struggles in finding hab therapists for our loved ones, based on what we have heard soon I may be doing all of this therapy work for free. We still don’t have a therapist who can take over any of those hab hours, but I guess that would at least make my schedule simpler.
