Mourning The Near Total Destruction of AZ DDD Habilitation

If this were an episode of something more titillating to view or read, the kind with rapt viewers eagerly awaiting a happy or scintillating ending, perhaps I might start this post with something like “dearest reader…” But no. This isn’t that kind of escapist retreat, nor can I predict a happy ending.

A week ago the state of Arizona began rolling out changes to the assessment tool for habilitation and attendant care. This is how they determine the number of habilitation or attendant care hours they will pay for each child who qualifies for DDD services. The entire document notes that families will need to come up with other resources to cover the costs of care previously provided. For most families, those don’t exist. They will never exist in a country where the middle class is vanishing and only the very wealthy can afford these services because it requires tens of thousands of dollars a year to pay for these types of therapies. Employer insurances usually don’t cover them and no parent I know can afford to quit their jobs and stay home and provide these services for free anymore.

For context, Tony as a 3 year old qualified for 40 hours a week of habilitation based on his medical necessity and the severity of his disabilities and functional deficits. If he were being assessed as a three year old today, he would only get 5. That would be entirely inadequate to meet his needs. Studies have demonstrated that 40 hours a week of habilitation or ABA is absolutely necessary for the best outcomes in that age range for anyone with his level of Autism.

Who then will step up? The schools? They don’t have the money. They don’t have the trained therapists to do this work either. We are robbing Peter to pay Paul because this bill is going to come due with increased institutionalization. Is this who we are becoming as a nation? A nation where some behind these changes want to highlight their Christian ideals as an inspiration for their policy making? I’ve read the Bible many times, and I will tell you, Jesus didn’t once say to turn his back on the disabled in this manner.

And what happens in the economy to the hab therapists who were previously able to work full time? Who will pay for their unemployment benefits? Would it perhaps not have been better to give them a wage to do something useful in the community instead? There aren’t enough replacement jobs in the economy to absorb this hit as far as I can see, so unemployment is exactly where their pay might be replaced from.

But those unemployment benefits won’t help today’s developmentally disabled toddlers and kiddos within the state of Arizona. So here we are, and I would like to highlight a few of the recent milestones we’ve celebrated because of the skills that habilitation have helped Tony build.

He’s now doing 60 piece jigsaw puzzles. He likes to build them upside down, and he usually starts with the border first.

In August, he was able to sit through his first EKG awake, aware, and cooperative for a medical provider he’s never seen before at PCH. Three years ago, he would have needed sedation for this, but was able to tolerate it because I did desensitization work with him using the same type of adhesive tabs. This type of work cuts costs over a life time, because this won’t be the first EKG he needs as an individual with Sotos Syndrome.

This past Friday he had his first ophthalmology appointment after finally being able to maintain his gaze steady on a WelchAlynn long enough to get a reading confirming he has vision problems. We practiced the skills for both by looking at a viewfinder and labeling animals in habilitation. He didn’t have the skills on his own and a one time explanation would never have been enough.

He’s now tolerating assemblies with the entire school. Just five years ago, he couldn’t handle that much noise. Every success he has in school was built on the work done in habilitation and ABA. In school, he’s meeting all of this year’s IEP goals so far, and he’s learning to read and spell.

I don’t think we should be grieving this and moving on as a community or just thanking our lucky stars that it might not apply to us personally. I think we should be trying to find a way to fix this before it becomes an even more expensive problem down the road. Or the kind of problem that gets “solved” by increased institutionalization and homelessness for individuals who are aging that need that type of placement but can’t find it for lack of availability and who will not have gained the skills to live in other settings within the community.

And P.S… In case you were wondering…

My mom didn’t take Tylenol during her pregnancies for either my sister or I, this only being timely and relevant as both of us inherited the Autism that is a genetic trait in our family without a single drop of prenatal acetaminophen/Tylenol. My hope is that if more people share this, we can keep this from turning into a witch hunt of blaming the parents that makes the lack of services provided by any community seem justifiable. After all, if a parent caused this why help? But if they didn’t- and they didn’t- each and every one of us should hope this isn’t the type of assessment tool that still exists for the children or grandchildren that will need these services in years to come.