Insurance Authorization for Autism Services Must Prioritize Parent Support/Education
Parent support and education should be fundamental to all insurance authorizations for autism services. This, since we do not operate as a medical model. That is, if a person has appendicitis, they can have an appendectomy and go home. They can return to a happy home, a sad home, a rich or poor home, but the appendix won't grow back.
That doesn't work for behavioral services. Behavior and related issues will likely 'grow back' and skills taught will not transfer or strengthen without real time support. The job of autism service centers isn't just to create pretty graphs.
Kids are also not 'cured' by 'ABA' or through 1:1 Center services. We must teach and provide alternative and needed skills, develop individualized and person-centered behavior plans based on an assessment process that includes the home, parents, and key aspects of the child's world. We must respect and respond, both effectively and compassionately, to child and family/caregiver realities. We must prioritize the child and family/caregivers' authentic Success. This is not possible without regularly scheduled and informed family/caregiver contact and support.
Even more, for the children we serve with more challenging behaviors and levels of need whose numbers have been increasing, success in a controlled, resourced, and (hopefully) well-staffed setting doesn't mean much unless that progress and those gains are shared, generalized and transferred. We also don't live with the child – their parents and caregivers do.
After about 10+ years offering behavioral services mostly to adults, I started providing direct clinical behavior analysis during 5 years at Kennedy Krieger in Baltimore to include community-based services in some of the poorest city neighborhoods. I saw kids in impoverished rural areas in surrounding counties. I had referrals from domestic violence shelters.
In northern CA, I had a client family who lived in an old camper without electricity or running water in the mountains renting from a paper producer under close to 3rd world conditions. It wasn’t possible to get in or out in heavy rain. Other CA clients included those in small drug impacted towns. I worked with Hispanic families, documented and not, who lived with rather low incomes and worked very hard. My contact with many often included scheduling with a translator to accompany me. He was great to work with, too. I've seen poor white and Native American families along the Klamath River Valley.
I've never had a problem regularly scheduling with at least one parent/caregiver whether in or out of the home. I also schedule for family/caregiver availability as possible. It was not an issue at KKI or since whether I was working on my own or as a clinical director/senior behavior analyst at autism service companies. The expectation of parent/caregiver participation was always there, discussed and made clear from the start.
It can sometimes be hard to make and keep that needed connection. It can sometimes be hard just to schedule regularly. But resolving that dilemma is part of the challenge of providing child and family-centered and supportive services.
Agencies regularly talk about ‘pairing’ with children. In my experience, this concept is often poorly understood and applied in ways which are incorrect and counterproductive. The premise of generating a stable, respectful and positive therapeutic relationship with the child is imperative.
When done correctly, the BCBA; RBT become reinforcing agents; that is, CMOs for reinforcement by which Sds can then become consistently utilized. And this enhanced stimulus control must be shared with/transferred to families and caregivers.
The same effort at building a therapeutic relationship must similarly and consistently be made with families/caregivers. Being available in real as well as perceived time is part. ‘Perceived’ means, to me, that parents/caregivers also know they can call, email, even schedule when they need assistance. Providing useful support as part of the family and child’s world is a key.
And it makes a difference.
Connecting with parents/caregivers incorporates many components but, most of all, means being there when it matters. It means being able to comfortably walk into situations the family/caregivers have requested or as scheduled and work together.
It means being comfortable engaging probes/interaction with the child which may not always be exactly successful in the family’s presence since everything doesn’t always work the first time. That's ok and it's ok for the family to see. Knowing, and demonstrating sometimes the hard way, that we can compassionately and effectively work with and support the child, family/caregivers in situ is powerful.
Behavior Analytic treatment; radical behaviorism must incorporate all primary stakeholders, structural and context driven realities. It assesses for and responds to the concurrent (and transactional) needs of everyone in the environment to include the child, primary providers and others. It considers universal design
Building our relationship with the family/caregivers can then hugely increase family/caregiver EO for participation. We must prioritize and nurture the family connection.
At the same time, we must not use a reductionist medical model but be sure to provide comprehensive, compassionate services which are individualized for each child and family. If that's done correctly, the Right to Effective Treatment will become far more effectively met than is often the case as things stand.
As a relevant aside, I've become a bit annoyed by the apparently increased use of the 'right to effective treatment' in the new push to not require parent participation as part of insurance authorization. It's a false flag.
In order to receive specific medical intervention and care, children and (especially older) adults often need to meet certain expectations which can be sometimes rather arbitrary and very difficult, if not impossible, to address. But since those 'requirements' belong to the system, they retain the right, and will deny care; ignore the right to effective treatment.
The 'ABA' model has increasingly taken on what I consider a 'medical school envy.' So far as I am concerned, what we do can be far harder than practicing medicine in a number of ways in that so much is needed to be simultaneously interconnected and applied
What we should be doing is getting better at using the comprehensive field of Applied Behavior Analysis and dismissing a contradictory 'medical model' for services. Disconnected 1:1 services for children with autism will primarily serve billable hours and day care but far less the child and family; the social system in which they need to have success. In all this, it is my position that we have yet to fully meet the expectations in Baer, Wolf and Risley's 1968 article.