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*Note: ABA can effectively be applied in so many diverse ways, with any population, across the lifespan, that for this post I am specifically talking about intensive ABA therapy.
ABA therapy isn’t for everyone.
Did I just say that??
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For all of the joys, successes, and breakthroughs that quality ABA therapy can bring about, it is an unfortunate reality that ABA therapy is truly not accessible to all. Especially if the individual needing services lives in a rural or international location.
Oh how I wish this were all so simple that an individual could demonstrate a need for therapeutic services, a local provider is contacted, funding is provided, and services begin. Some states are lucky enough that this really is how services are initiated. Unfortunately for countless others, it is nowhere near this simple.
One of the most horrible parts of my job is seeing children who very much need help either go without services, or start and then quickly have to stop services. You always wonder about those clients or potential clients and how they are doing now. Did they learn to speak? Are they toilet trained now? Are they still harming themselves?
There are sooooo many reasons why quality ABA intervention is not accessible to all, such as: the supply of knowledgeable and available providers does not meet the demand, the school systems are overburdened with a growing special needs population as their funding to help these students gets slashed, and although Autism does not discriminate there are clear racial disparities amongst who receives access to treatment. I could go on and on….. there just isn’t space in this post for me to discuss all of the reasons why an individual may go without needed treatment, so I will just name a few:
- ABA Haters /Against behavioral intervention – So clearly, if a parent/caregiver is against behavioral intervention then they won’t seek out ABA Therapy. Some parents/guardians feel that ABA is too harsh, too demanding, too data driven, or robs a young child of a childhood (since therapy is intentionally intensive). Sometimes parents look into other treatment options that appear more fun or less intimidating than ABA, give ABA a “try” and then abandon it, or for some families they may choose not to pursue treatment at all.
- Unable to fit therapy in to your schedule – I once worked for a company where I had sibling clients who both received ABA services. The parents both worked from about 7am-8pm, every day. The only person in the home besides the children was a nanny who did not speak English. The company I worked for had a policy that mandated parent participation, and I was stuck in the unpleasant position of trying to come up with exciting and creative ways to involve the parents and the nanny, despite the time and language barriers. Ultimately, the company discharged the family for lack of participation. ABA Therapy requires active involvement of stakeholders. Even if services occur at home, we may need to involve the teachers, and vice versa. I have also been in situations where the family was so involved in extra -curricular activities (karate, band, boy scouts) that they were canceling therapy sessions left and right, or always arriving late to therapy sessions. At that point you have to ask, “Do you really want therapeutic services??".
- $$$$/The True Cost – A full time ABA program with a couple of direct staff and a supervisor can cost thousands of dollars a month. If your insurance won’t cover it, Medicaid won’t cover it, the school doesn’t offer anything remotely close to ABA, and you don’t own a personal money tree, then what are your options? For some families, the only remaining option is to just go without therapy. Beyond the financial expense, the “cost” of scheduling your life around ABA sessions can be far too high for some. I have worked with some families where it wasn’t the financial cost that led them to terminate therapy, it was the strain on their marriage, the issues with their other children, or the loss of spontaneity to their life.
- No providers – Maybe you have funding for services, and the time to commit to therapy, but there are no providers in your area….or even close to your area. You can try expanding your search because many ABA professionals will travel to you (goodness knows I do plenty of traveling!), but keep in mind you may be responsible for the cost of their travel. Or, maybe the providers in your area all have year long waiting lists. In my local area, the most prestigious providers all have 12-18 month long waiting lists, precisely because their services are so great! That’s a very unfortunate twist of irony…..
- D.I.Y. without oversight – I once worked with a family who had difficulty locating providers (or affording them) so they started working with their daughter themselves. They researched ABA, they read books, they pored over research articles, and they made lots and lots of flashcards. Unfortunately, once I started working with their daughter it became clear there were teaching errors the parents were unaware of. Such as overprompting, issues with scrolling (a type of guessing) when responding, and a chain of problem behaviors had been shaped up by the parents giving in to tantrums. My point is that a program can seem to be working, the child can learn new things and make progress, but without professional oversight errors or issues can be invisible to the untrained eye. If you have decided to serve as your child’s therapist, then please contact a BCBA to oversee the program and to properly train you. To put it another way, if I read some medical literature and attend some webinars online, that doesn’t qualify me to perform surgery on my own child. If ABA therapy looks easy to implement, that’s because you are watching a skilled and well trained person make a highly complex intervention appear simple.
*Quick Tip: all ABA is not equal.
If you DO want ABA services and for whatever reason cannot access them, please carefully consider setting up your own program (which includes professional oversight). Here is a handy resource that should help clear up the differences between quality ABA and “trying to appear like” ABA.