Saved ALTCS Roughly $67,000 And Counting In Diapers? An Open Letter To Governor Hobbs and the Arizona State Legislature

This evening as I was eating my dinner, I received a text from my sister asking if I’d seen the e-mail yet from DDD. I quickly scanned it, and saw that Governor Hobbs is calling for AHCCCS to go through emergency rule making to reevaluate the new assessment tool and provide a process for those requiring “extraordinary care” while under the age of 18. I commend the Governor for this promising development.

That being said, I remain committed to the statement that it won’t be enough to prevent waves of more expensive problems from rippling out of this and crashing into our communities in a more expensive way years down the road. As such, this was already a planned topic for this very evening before I read that e-mail…if anything, it only made the intro longer so that I could provide additional context to my readers.

When, after a year and a half of work undertaken largely by me and for free (after having read an ABA based book I purchased from Amazon on how to potty train kiddos with even severe intellectual disability), our son was officially not having any accidents without diapers. His physical therapist at the time, Ms. C, turned to me and said that they never thought they’d see the day. That would be her and his speech therapist and his occupational therapist (who all worked for the same therapy clinic). One of those therapists less than a year prior to him losing the diapers had even expressed that she expected he might need institutionalization within a couple years of her comment.

“How are you going to keep him safer as he grows bigger?” she had asked.

I moved Tony from that clinic not too long after he was potty trained. My kiddo then was just under five years old, and already using the biggest size diaper available and was starting to need bigger size disability briefs. Briefs that are covered for individuals such as him under ALTCS/DDD.

If I had listened to what I was being told by the therapists treating him, my kiddo would still be in diapers. These mind you, are the experts we as parents are supposed to be listening to. I don’t want to attack them, they were professionals giving me their honest opinion based on the behaviors they were seeing him exhibit and their over all views on his level of functioning. I did his potty training myself in the 30 hours a week of hab I was providing for free for my son because we were only able to find a provider who could do 10 hours of the 40 he was covered for. DDD didn’t allow parents to be the provider then, so of course to me, it is no surprise that what DDD pays out-of-pocket with these programs has risen, because now kiddos who qualified for medically necessary services that entire time but couldn’t find a therapist can now receive all of their hours if the parents are able to provide those services.

I would also like to remind you that in this economy, nobody can do that for free anymore, not me, not anybody I know. And many parents back then probably weren’t either because they had to work.

My son was four and a half years old when he was potty trained. He’s still non-verbal. He still has extensive deficits in many areas, but that is nearly 8.5 years of diapers/briefs that ALTCS could have been buying. Please note, I actually bought all of ours myself because I didn’t know at the time ALTCS or DDD would have paid for them- literally nobody told us.

Right now, current costs for the briefs he would need are as follows:

Please note that there is only a five dollar difference between each size, for simplicity I did the math for the size he would currently need (which currently cost $109.99 for a case of 48). Also note he has been more than 100 pounds for at least five years, and he would have actually been in the size small of these within six months of when he was able to stop using diapers if we hadn’t been successful.

So here’s the math on that (starting with the number of cases we would need per month multiplied by the number of months times the number of years he’s been out of diapers):

Can you imagine how much money that is going to save the state as he continues to age? We have been told by his geneticist that he could live to have a normal lifespan.

Teaching these kiddos is not like teaching a regular child. It took seven years for him to master buttons, zippers, and snaps. Seven years of targeted therapy programs (the bulk of which hour wise were done in habilitation because OT is only 50 minutes per week). Lawmakers who say that teaching our children is the same type and level of responsibility other parents experience don’t recognize the difference in the amount of time and effort needed for them to learn those skills.

When I am gone, every day my son gets dressed wherever he ends up living will be a cheaper day in terms of staffing costs and maybe even level of care for all of those years because we spent time every week in habilitation for years helping him learn that. Just remember that when even kiddos you think don’t meet the level of extraordinary care hit the school system, they will be far less likely to have the skills necessary to succeed in those environments without these supports. And when the schools start turning to the legislature for more support because special education costs and therapy needs are skyrocketing in the schools because of this, what will you say to them? That it’s part of their typical responsibility and find a way to make due without?

I sure hope not. And let’s not forget, that for kiddos over the age of eight when DDD’s current assessment tool might give them just a few more hours, they will have less neuroplasticity. Meaning, it will take them longer and be more expensive ultimately for them to gain the skill… if they still can.