In Arizona, once a kiddo is diagnosed with a qualifying disability, they can apply for both the Arizona Long Term Care System (ALTCS) and Division of Developmental Disabilities (DDD) services. When Tony was diagnosed with level three Autism, we immediately applied for both services because the insurance we had at the time would not cover any therapies for individuals with Autism. At that point, genetic testing hadn’t been completed yet, but he was approved a few months before his third birthday on the basis of the extent of his delays as related to the diagnosis he was given.
Once an individual is approved for DDD, they are assigned a support services coordinator (SSC). The first SSC we had gave me a list of agencies that I could contact to find habilitative and ABA services. Pretty much every agency at that time had a wait list (one of the more popular local support agencies, SARC, had a wait list time of more than a year), but we were very blessed that we were only waiting a few months with the agency I chose. The wait list time can be a huge obstacle, because at that time DDD only authorized intensive habilition and ABA until age 5. A person could get an extension for a year (which we did) if their clinical supervisor submitted documentation justifying the ongoing medical necessity. But time on the wait list doesn’t extend the time services are approved for, so any time spent on a wait list is time that the individual wasn’t going to be getting those services. After the individual has reached either an end of their eligibility for the merged hab/ABA program at age 5 or 6 (if extended), they are usually transitioned to a reduced number of authorized habilitation hours. For Tony, ABA at that time had to be applied for and transitioned to the ALTCS portion of his benefits.
Once a family gets off the wait list (typically this happens when there is an opening on a clinical supervisor’s schedule and a therapist available in the family’s area), a clinical supervisor will come to the home and assess the individual with developmental disabilities to see how many hours of services they meet medical necessity for. For Tony, the recommendation was for 40 hours per week (though for the first two years, we were only able to find a therapist to cover 10 of those hours, and I did the other 30 unpaid because I understood how essential that was going to be for our little man). From that point on, there is a rotating set of monthly meetings that are mandatory for the process.
Every three months we meet with our son’s SSC to discuss his ongoing needs and his current therapy services. Typically when a kiddo ages out of the merged hab/ABA program, their habilitative hours don’t have a BCBA as the clinical supervisor. For Tony, because he is still receiving ABA separately from his hab, his ABA clinical supervisory team has been gracious enough to join us with those meetings to discuss Tony’s ongoing medical necessity for habilitative hours.
We have one planning meeting a month that includes myself, all members of the clinical supervisory team, and any available therapists that are under their supervision. In planning meetings, we discuss Tony’s programs, the progress he has made, what our challenges are, and any new programs we want to implement. Something I always loved about how Stephanie handled these meetings when she was clinical supervisor is that she would spend time telling Tony all of the things he was doing well. BCBA1 also takes time to recognize the positives going on, and I think that is so important for him and to me.
Tony saying “hi” to everyone on AAC, the anonymous BCBA is on the computer watching. BCBA1, who was the assistant clinical supervisor at the time these pictures were taken, is shown discussing one of the therapy targets with the BCBA, and in the third picture we are getting ready for a meeting to start.
We have one meeting each month that is a parent training meeting, where a member of the clinical supervision goes with me and a therapist to observe what I am doing for my piece of the therapy programs and provide feedback to ensure that I am applying appropriate therapeutic techniques with 100% fidelity. And finally, additional overlap meetings are required for any therapist working with Tony who is a registered behavioral therapist (RBT). This level of therapist must be directly observed providing therapy by a BCBA for a certain percentage of the hours worked each month.
Parent training meeting in progress during the first pic, the second Tony is doing one of his tacting exercises under supervision, and in the third BCBA1 is observing his tooth brushing program, which has components for both tolerating others brushing and learning self-brushing skills.
Truthfully, all of this comes with a whole lot of meetings. The process can seem overwhelming and somewhat invasive for the deeply private. It wasn’t easy at first constantly having people outside of friends or family in our home. And it does make it pretty impossible for everybody living in the household to feel like home is always that sacred space to relax in. But these meetings are the foundation of the therapy process that has been helping our son move forward, and so they will continue as long as they are needed.
