I feel like we have been down this road many times before with speech, occupational, floortime, feeding, summer camp and now behavior therapy. Every therapy that my sons have received has been funded by either Regional Center, School District or Insurance. An IEP will dictate the type of therapy, as well as the frequency. The downside occurs when they have a shortage of therapists and the student goes a year without services and also a new therapist might not be familiar with the devices utilized in therapy. Once a therapist is hired at the school the IEP team convenes and compensatory hours are given.
But when the therapy is at the home or an on-site clinic and funded through a third party there can be no warning if there is an issue with the progress or the methods being utilized in the therapy. Families have to wait for the progress report to be submitted. These can also portray the family in a negative way if the agency is trying to get more hours.
I have been surprised at what was written in reports and requested updates when the information is questionable and not what I have said or seen occur in sessions. It is much easier to keep communication open with the family instead of waiting one week before the progress report is due.
For the past year my teen son Matthew has received ABA in our home three to four nights per week. Initially a Director and Supervisor visited a few times over a thirty day period to do the functional behavior assessment. Once that was approved the Director brought along a new supervisor and two therapists. One of the therapists was scheduled for three days a week with the other one for the other day.
Over the thirteen months we had ABA the same therapist was consistent for the three days. The once a week therapist changed four times and then the position was never filled since school started, leaving us with only three days per week for six months. The Supervisor changed four times plus the two that did the FBA each did a stint as the Supervisor between new hires.
I have shared about the great results we were seeing with the tooth brushing, eating and future skills that were discussed. This all came to a halt last month due to the Regional Center requesting further information. I was told one thing by the agency and learned more details from the Regional Center.
The agency is only a vendor through the State as a provider for Behavior Therapy, and what they were providing and recommending in their progress reports was adaptive skills training. They were repeatedly asked to remove the adaptive skills and to stick to the initial functional behavior assessment. What the agency did was state that the parent requested all these other skills to be taught.
I shared to the State Coordinator that each new Supervisor would ask me what I wanted to work on next. According to the funding source they cannot do this without permission from the funding source. This is well known to be a tactic agencies use to get more hours and continue on with services. As parents and families we are left alone with no guidance or direction on how to keep the progress afloat while there is a setback in funding and services.
The last Supervisor informed the State Coordinator that we were ninety percent done with toilet training Matthew and that I was the one stopping the progress for not following through after therapy sessions. I still have the notebook with all their data sheets here as no one has called or stopped by to pick them up. There is not one form for me to fill out and take data on my own or instructions for toileting when therapy is not in session.
I have no desire to work with an agency that flat out lies about families, ignores the information from their funding source and then has no follow up system. Matthew stood at the front door for days waiting for the therapist to arrive. Now I need to rely on books to continue with the toilet training. I had continually asked what the next step was. The therapist was not given any direction either. Although Matthew really connected with the therapist, continuing with an agency that utilizes these tactics would leave us making little headway as there was no leader in this process.
The State Coordinator asked me to choose between wanting an agency that provides behavior therapy or working on adaptive skills. I asked for names of agencies so I could research, but we hit another wall as most agencies do not provide services after age fourteen.
Matthew cannot attend a summer camp, take swimming lessons or participate in after school sports until he is toilet trained. The Regional Center Psychologist wrote in her report that this therapy should not take more than six months.