For several years now I have been hearing so many stories about habilitation therapy in Arizona. “Rumor has it,” some families of older kiddos who lost their habilitation (hab) therapists and couldn’t find a replacement quickly had their authorized hab hours taken away from them. Which then makes it much harder to find a replacement, because “rumor has it” that once those hab hours are gone for some families, they might not be coming back even if a therapist is found who feels comfortable taking the job.
We are in a situation where for the first time in a couple of years, all of Tony’s authorized hab hours aren’t being used by a therapist. Shortly after the start of the pandemic, the Division of Developmental Disabilities (DDD) made a temporary policy change allowing parents to become temporary paid hab providers for their own children, so that is what I chose to do to utilize the remaining hours in case all of those rumors ended up being true for our family too.
The amount of hab hours our son is currently authorized for already doesn’t meet his full medical necessity needs for this type of therapy, so another reduction of these services certainly would not be in his best interest. The work done with hab this past year alone helped contribute to a doubling of his receptive language scores on his yearly assessments, and a trippling of his domestic living skills. What we do in hab has already made providing a lifetime of care to Tony cheaper…but we have a long, long way to go still and without the practice generalizing cooperation to others, we are less likely to be able to help get him to where we hope he could be.
“Rumor has it” though, that some other states allow the parents to be the paid hab provider for their children as part of their normal policy. I think Arizona should do that also, not because I want to be a permanently paid provider- we already know I am the person Tony will cooperate with the most for therapy tasks and what he really needs is ongoing expanded practice working with others. I personally will always prefer to hand this roll over to a hab therapist, but I know that finding an incredibly patient person who feels comfortable working with Tony during our current pandemic circumstances is going to likely require an act of God if not a fair bit of time. Turn over in these positions is often high though because usually hab therapists want to move on to higher paying positions as soon as possible.
Rather, I think providing the permanent option for parents to act as the paid provider would allow parents who are otherwise unable to find providers expanded access to the support of clinical supervision (which would allow for the best possible outcomes for these individuals) and it would allow DDD the opportunity to have more oversight in whether or not anything is being done to meet all of a kiddo’s needs. And the truth is, some people might not do the therapy work for their kiddo for free if a hab therapist can’t be found…but they just might if they were getting paid for it. And certainly, the Division of Developmental Disabilities could require as a condition that attempts to find a hab therapist be ongoing, and that the hours be turned over to such a therapist as soon as they are identified.
Being put in a position to provide years worth of necessary therapy services for your kiddo because hours have been taken away in the absence of an immediate replacement certainly might cause a person to feel like they are being taken advantage of. Officially and for the record, none of my schooling was in therapy, but I have had to do a lot of reading and taken a serious crash course from life on how to supply as much as I can in therapeutic supports because we have had times where we were without a particular service in one area or another for our little man. “Rumor has it” that one hour a week therapy types are easier to get back than hab, which often requires many paid hours a week. I know we were without a physical therapist for the past year until just two weeks ago, and that hour was taken away and recently was put back.
I actually prefer it when “Rumor Has It” is only a song to be heard, which can be listened to and loved or turned off and left behind if that is what a person chooses. There’s no leaving this behind. The best I can hope for is that if we remain unable to find someone who can fill Tony’s unused hab hours when DDD pulls the authorization for parents to be the temporary direct care worker is that all of those rumors I’ve been hearing over the years won’t be true. Because certainly his medical necessity needs for this type of therapy won’t have been reduced, and I will still be here, having to do the best I can to help him gain skills- with or without these needed supports.
