Yesterday afternoon, I read the public response from Raising Special Kids about AHCCCS 1115, the proposed CMS waiver that seeks to extend some provisions allowing parents to provide attendant care to their children, while discontinuing others, namely allowing parents to become the paid habilitative therapy providers. I feel it is important for me to share my thoughts, but I also do not have time to finesse my writing to the degree I might in other circumstances, as I have been and will continue to be working on tasks related to my hiring as the one-to-one aid for my son in his school district as he transitions back into that environment.

For our son, it is a necessary accommodation to provide the least restrictive environment that he have a person he already cooperates with safety instructions from working with him in the school environment until he generalizes that cooperation to staff there. We asked for and wanted his RBT to go in with him, and the school district communicated that their policy prohibits outside therapists from working with students inside the classroom.

So here I am spending time and planning on giving up more profitable financial opportunities I could have had to provide the support necessary for my son to flourish as his one-to-one for the first year until he can generalize cooperation of safety instructions to his teacher and permanent one-to-one.

So I don’t have a lot of time right now to sound polished, collected, artistic, or anything other than a mom who sometimes feels bone tired, and I will ask each of you bear patiently with that.

On the surface, the scenario I am describing might seem to support the argument that insisting hab providers be someone other than the parents promotes generalization. But the reality is he’s worked with dozens of therapists in other disciplines (ABA, NMT, PT, OT, ST, and even HAB) who were not me over the years, and it has only been a more recent development within the past year that he will generalize critical safety instructions to anyone other than me. So, I do not believe his struggles with generalization are related to lack of exposure to other people, but rather the specific symptoms of his disabilities in general.

When our son was first approved for habilitative therapy, we could only find someone to do 10 of the 40 hours he was assessed for. So I did the other 30 unpaid.

My son is potty trained because of me and that unpaid work (that took a year of work, and still required reinforcers for years to ensure cooperation up until about 8 months ago.) He no longer smears poop on the walls because of me and that unpaid work. And so, so much more that I don’t have time to write here, but feel free to stick around and read some posts from the past 5 years or so if you want a comprehensive list.

After he was out of his diapers, his physical therapist at the time looked at me and she said “we never thought we’d see the day.” All of his PT/OT/ST services were at the same location at that point, so there was a coordinated “we” behind that statement. Everyone who will ever work with our son in any environment has and will continue to benefit from work I did for free because we couldn’t find providers.

I have a kiddo with a history of hours a day of self-harming. I have a kiddo who would try to use his entire body weight to push through someone like a football player for upwards of an hour to get what he wants. A kiddo who couldn’t calmly or safely take “no” for an answer for years. A kiddo who to this day has risk assessment comparable to that of a kiddo under 18 months of age. A kiddo with challenges so severe people would say things to me like this quote as I remember it from his current developmental pediatrician (who is truly fabulous!) after the first 2 hours she spent assessing him: “When I first read your paperwork, I thought you were exaggerating- but you weren’t!” A kiddo who wouldn’t keep his clothes on when therapists were present (he now can for an entire day of therapists in home because of paid work I did in hab), who would frequently grab his genitals and start stroking regardless of who was in the room. A kiddo who at one point required 2 adults to his one to provide almost all therapy services.

That second person was me. And I wasn’t paid for that either.

We wanted hab providers other than me to fill all of his hours, but we haven’t had anybody to do most of his hours other than me for 6 of his 8 years he has been assessed as meeting medical necessity for hab.

Of course every success Tony has would be absolutely impossible without all of the therapists who have worked with him (and I am grateful to each and every one of them), but it is also true it would have been impossible without the work I did for *free* during his early years, without the work that I have been paid for the past three-but will no longer be able to afford to do for free if we can’t find a provider.

Work that will then go undone.

I understand the concern expressed by Raising Special Kids that if parents are allowed to remain providers, it may promote atrophy in the work force of habilitative providers. But for families of individuals like my son, that atrophy might not be going anywhere because the challenges can be beyond what a person paid at the level of habilitative therapy wants to deal with. And, until the rules governing habilitative workers being able to make up hours that are canceled are changed, that may continue even for other individuals. Currently, if a family cancels the therapy because of an illness or an emergency, the hab therapist cannot make up those hours and will not be able to have an opportunity to earn those wages, so if they need that money to support themselves, this job won’t provide them with the stability of income they need.

We’ve had people turn down being our son’s habilitative therapist once they learned the details of his needs and challenges. And even though he hasn’t done any self-harming in any setting in more than 12 weeks now, it still takes him so long to learn certain skills we may continue to struggle to find individuals with the patience to fill all of his hours.

So many skills our son currently has he wouldn’t if I hadn’t been working with him. He may have needed to be in a facility at a young age if he were in a family where one parent couldn’t afford to stay home and provide that support for free.

So my belief based on my personal experiences is that in order to provide the best outcomes to individuals with disabilities, especially those who have severe behavioral challenges, there needs to be at a minimum a provision allowing for the parent to become the paid provider if no other provider can be found. I feel like for individuals with challenges like my son, there is an increased risk of need for placement in a facility outside of the home without a paid option for the parent to step in when no other provider can be found.

I think having provisions in place requiring documentation that a hab provider cannot be found is appropriate to substantiate the need, but it is my hope that the AHCCCS Administration and other stake holders in this process will hear the needs of families such as mine as they are fine-tuning the draft of proposals submitted to CMS and at a minimum include a provision allowing for parents to be the habilitative provider if no other provider is willing to take the case.