By: Nahoma Presberg, MS BCBA
ABA therapy is highly individualized and very personal. From the decision to seek this therapy for your child, to finding the right practitioners, to when to discontinue services, there are no concrete rules.
In this article, we will discuss the factors that should be considered when thinking about discontinuing ABA therapy including progress on treatment goals and assessments, socially significant progress, availability, support system and resources, and funding. We will then discuss some tips for appropriate titration, or reduction in services, and ultimately, a successful discharge.
Progress on Treatment Goals and Assessments
Let’s consider this scenario: Your child has been enrolled in ABA therapy for some time and you think that it might be time to consider terminating. What are the thoughts that are going through your head?
The first thing you might think about is what progress your child has demonstrated, or what have been the outcomes of his or her therapy so far. Your child’s ABA therapy provider should be supplying you with a regular progress report, usually every 6-months or so. This should include two things: a description of your child’s progress on the treatment goals worked on during the period and a description of your child’s progress utilizing some regularly administered assessment tool.
First let’s discuss how you might analyze progress on treatment goals. Each goal should display your child’s level of performance prior to the start of treatment, or baseline data, and then display your child’s current level of performance. With the help of your BCBA®, you should be able to analyze your child’s rate of progress. If you find that your child is regularly not making progress on his or her treatment goals, and that these goals are not being updated in order to meet his or her needs, this might be a time to consider either changing ABA providers, or, seeking additional resources. Alternatively, if you see that your child’s rate of progress is very good and that they are mastering treatment goals in baseline or very quickly, this might also be a time to consider reducing or terminating ABA therapy.
Next, you should also look at your child’s progress on the assessment tools your ABA provider is utilizing. This might be something like the Vineland, VB-MAPP, Essential for Living, or something else. The results should inform you of your child’s level of performance before they started treatment and his or her current level of performance. The results may also compare your child’s scores to other children his or her age, or provide some other indicators of progress. It is best to analyze these results with your BCBA®, but the results of these assessments can be a good indicator of when it might be appropriate to discontinue ABA therapy.
Socially Significant Progress
Now that we’ve talked about the progress measured by your ABA provider, let’s talk about the most important thing: progress measured by your family. In ABA, we refer to this as “social significance.” Think about what you were hoping to get out of ABA when you first entered treatment. What was the original reason that you reached out for support? Has your family’s life significantly improved as a result of the progress your child has made with ABA therapy? One of the biggest indicators that it may be time to move on is if you’ve met your goals. For example, you may have requested ABA because your child was struggling with his or her morning routine. Maybe it was a battle to get your child up and ready for school every day. Is that still an issue? If your child has made progress in those goals then you might be ready to move on. If they haven’t, there could be an issue in the treatment plan itself and it might be time to consult with your BCBA® about making program modifications to better support these goals, but it is also probably a sign that you would benefit from continued services. However, once you’ve met the goals that you’ve set out to accomplish, it is worth having a conversation about whether there are additional skills that should be worked on within the context of ABA therapy or if it is a natural time to discontinue or begin to decrease the number of hours of therapy.
ABA therapy isn’t like taking a pill. It takes a lot of time and energy on the part of both the parents and the child. One of the considerations when determining how many hours of ABA your child should have, is thinking about what other things they would be doing with that time if they weren’t in therapy. Sometimes, parents may choose to prioritize other kinds of opportunities such as sports or camps or other kinds of activities that may be important for a child’s social skills development. If your child needs the support that ABA can provide, then it is worth the investment of time and effort to work on the skill development that they will learn in ABA. However, it is important to identify clear goals and priorities and make sure that time is being spent working towards those goals.
Support System & Resources
When considering a discontinuation of any treatment, it is important to consider what additional supports and resources are available to pick-up where that treatment left off. Although your child may have made significant progress on his or her treatment goals and assessments, your family’s life has improved dramatically as a result of the improvement in your child’s behavior, and you’ve made plans for your child’s schedule to be full of new and exciting extra-curricular activities in lieu of ABA therapy, it is important to take a step back and consider what might be left behind. Does your family have adequate training to implement the techniques that were successful in getting your child to this point? Do you have an appropriate transition plan that will guide you into the next phase of your child’s life? Are there any major changes coming up that might result in the continued need for therapy, such as a change in schools, a new sibling, changes to medication, puberty, or a move to a new town? Discuss all of these with your ABA provider so that they can support you through this transition so that your child will continue on the path for success. In addition, be sure you know how to contact your ABA provider in order to resume services should the need arise, or if you need any additional support throughout the transition.
Finally, another reason you may choose to stop ABA therapy might be financial.
ABA therapy is intensive and requires a team of highly skilled professionals who work closely on creating an individualized approach for your child. This often comes with an expense that can place a large burden on families and take away from other needs. Currently, all fifty states have coverage requirements for autism treatment. This can significantly improve access and reduce the cost of treatment. That being said, this does not always apply to all individuals. If you are considering stopping ABA therapy due to high costs, reach out to your ABA therapy provider to see if they can provide you with financial support. There are also organizations that provide grants and other support options for families in need.
Alternatively, funding sources may attempt to dictate when ABA therapy should stop based on variables that are not in line with the recommendations of the ABA provider or the family. If this is the case, your ABA provider should be able to give you resources to appeal these decisions and, if necessary, file appropriate reports for wrongful action on behalf of the funder.
The most important take-away from this section is that although ABA is an expensive treatment, if it is medically deemed necessary, and your child is benefiting from therapy, there are many options for funding and financial support that could allow therapy to continue.
Titration and Discharge
Typically, ABA services aren’t simply discontinued. Once your child begins to master goals, it is common to slowly decrease the number of hours of therapy until it is time to stop completely. Decreasing these hours slowly is a way to make sure that the skills maintain outside of the context of ABA and also that additional issues don’t unexpectedly arise. Slowly decreasing the number of hours helps to ease the transition both for the child but also for the family as a whole.
Another consideration is whether you can involve your child in the decision-making process. ABA is often something that a parent decides for their child, However, if it is possible, involve your child in the decision-making. They know themselves better than anyone. While sometimes it may not be possible and each circumstance is different, talking to your child about their goals and priorities can sometimes provide a huge amount of insight about what is best for them.
Lastly, as a parent, this is not something that you have to decide for yourself. The process of reducing and then discontinuing ABA services is something that should be an ongoing conversation between the family and your team of providers. Make sure that you are advocating for the needs of your child and encouraging these conversations on a regular basis so that you can plan for any upcoming transitions that your child or your family will face. The goal of ABA therapy is to teach skills that improve the quality of life. This means that there is always room to make the adjustments that you need so that ABA works for you.
For more information about ABA therapy or how we can help your child, contact Attentive Behavior Care today.