Family Engagement and Care Coordination Key to Positive Outcomes
THE FOLLOWING ARTICLE WAS WRITTEN BY DR. AMANDA KELLY, BCBA-D and PUBLISHED ORGINALLY AT: https://awakelabs.com/family-engagement-and-care-coordination-key-to-positive-outcomes/
Dr. Amanda Kelly, BCBA-D lives and breathes family engagement in therapy.
As the Director of Home-Based Services at Firefly Autism Services, Dr. Kelly focuses her efforts on supporting learners and families, and she is an expert in care coordination. We are grateful to have had the opportunity to talk with Dr. Kelly, and we are happy to share her expertise with you in this exclusive blog post.
We hope you enjoy it! Read to the end to find out how you can get in touch with Firefly Autism Services and Awake Labs.
Are there strategies that your therapists use to encourage families to participate in therapy?
We very much believe in leading by example. Our team of BCBAs and RBTs work closely with families, and we request that parents and caregivers are physically present during our sessions. Together, we ensure the professional relationship is one built on trust. Showing a family how they can get to a result they desire is the best way to gain trust. It is our responsibility to demonstrate effectiveness with our treatment. When we can do that in the presence of the family, the engagement we seek comes naturally.
What are some signs that a family is engaged in your therapy?
Productive family engagement in therapy can look very different from family to family. Individualizing all elements of therapy is a core feature of ABA, from the interventions themselves to the consideration of specific family dynamics. For the most part, physical presence in sessions and involvement in treatment is the ideal scenario. Other signs of productive family engagement can include:
- Willingness to collaborate on interventions
- Taking data outside of session times
- Being open to training and feedback on the implementation of a behavior plan
On the other hand if a family has never been given the opportunity to collaborate or have their opinion heard, this will amount to less than satisfactory outcomes for all involved.
Can you share your thoughts on what could happen if a family is not given the opportunity to collaborate and share their opinion?
It is essential for us behavior analysts to understand what the family and the person we support really value for optimal quality of life. We need to ask “what is the most important thing for this family”? If we make assumptions about what is important for any family, we run the risk of projecting what we want for them, not what they really want.
When this happens, the BCBA might ask that the family implement a strategy that addresses what the BCBA wants. The family might not be as invested in that case. They will be less likely to truly engage with the treatment recommendations. However, when the end goal of therapy reflects what the family wants, they will be much more likely to consistently implement our recommended interventions.
The other essential piece is understanding what is possible for the family. In a 2019 document clarifying ABA treatment of Autism Spectrum Disorder, the Behavior Analysis Certification Board (BACB) and the Association for Professional Behavior Analysts (APBA) stated:
“For some families, the time and effort that can be devoted to acquiring skills to implement ABA procedures is constrained by … the number of parents in the household, parental employment outside the home …, the needs of siblings and other family members, language differences, and financial and other resources.”
It is our responsibility to give families the opportunity to share their challenges. We must consider the variables that may pose a barrier to family engagement, and make sure that we are designing our programs in a way that both the person we support and their family can be successful.
Why is collaboration and coordination of care across disciplines so important?
There are lots of people involved from diagnosis across treatment and education. Pediatricians, psychiatrists, psychologists, speech and language pathologists, occupational therapists, applied behavior analysts, and education/special education teams may all have a part to play in the care of an individual and their family. Each discipline has a unique and valuable approach and perspective.
Collaboration and coordination of care across disciplines is important because it will exponentially improve the chances of meaningful learning and progress. Giving the opportunity for teams to share information and opinions will ensure the best possible chance of generalization and maintenance of skills.
What does true care coordination look like?
From the perspective of a behavior analyst, true coordination means connecting and working together with each of the other providers in a flexible and dynamic way. It means we all work towards a common goal – meaningful independence and adaptive functioning for the person we support. True coordination allows for skills to be taught as a team, and generalized across all settings, situations, and individuals in that person’s life.
Imagine this scenario: A BCBA has developed a protocol that can teach a learner some alternative communication skills. However, the BCBA did not communicate the protocol with the learner’s school, or with the learner’s speech therapist. As a result, the BCBA, the school, and the speech therapist end up working on contradicting communication goals. This means that progress is slow, because there are too many goals with too varied a focus.
Now, if collaboration was a priority, the BCBA, the speech therapist, the school, and the family would discuss and work together to focus on the same communication goal. During this discussion, the BCBA and speech therapist find out that the school wants to use an intervention that will be minimally disruptive to the class. So, they collaborate to come up with an intervention strategy that is minimally disruptive. The family also learns this strategy and implements it at home. Now, the BCBA, speech therapist, school team, and family are all using the same intervention strategy to work towards the same communication goal. Progress accelerates and the whole team benefits as a result.
From your perspective as a BCBA, what concrete steps need to be taken for care coordination to be a reality?
At the start of the process, it is essential to identify what the person being supported and their family really value for optimal quality of life. Once this is achieved, reaching out to the other professionals working with the family is the next step. Observing the person we support in all of the different contexts and environments in which they live is extremely valuable. Creating relationships for the purpose of a common goal is essential for coordination of care to be possible.
There is also the necessary consideration of what is the most important thing that other professionals are addressing. For example, if I am insisting on addressing something that a school doesn’t really see as problematic – or if I am recommending an intervention that they simply don’t have the resources to implement – the likelihood that consistent coordination of care will occur is low.
Ultimately, in order for consistency and coordination of care to be a reality, there needs to be a dynamic, flexible approach by everyoneinvolved with a focus on practicality and feasibility.
We often hear that all behavior is communication. As a self-described “radical behavior analyst”, what do you do to understand your learners’ thoughts as they are communicated through behavior?
For the purposes of explanation; “The radical behaviorist approaches mentalistic terms in the same way as any other behavior …” (Barnes-Holmes, 2003, p.145), where mentalistic terms refers to our thoughts or thinking. Extending on this, contextual behavioral scientists believe that it is necessary to view behavior as tied to, or a product of, a person’s historical and current context. I consider these approaches invaluable for a broader understanding of behavior.
Language doesn’t stop at words that can be heard. Thoughts or thinking are still verbal behavior. From my perspective, the question is less about measuring the exact thoughts in a learner’s head at any given moment, but more so understanding the history of the learner. I want to understand how past and current context, as well as the social environment in which they operate can have an effect on learning and behavior.
Let me illustrate the utility of this. Imagine that I am working with a learner that has mastered a variety of social skills in a variety of contexts. However, they appear to be unwilling to engage with their peers. Now, this learner may have a history of bullying by peers in a previous school. They frequently have thoughts like ‘I’m not popular’, ‘nobody likes me’, and ‘I’ll never be good enough no matter what I do’. When it comes time to use social skills it may be less of an issue of mastery, but more of an issue of the learner’s thoughts that are the result of a previous experience.
In this instance, having insight into the learner’s thoughts would be very valuable. As an analyst with an understanding of the importance of context and history, I might be more likely to think in these terms when faced with non-obvious barriers to successful outcomes. My approach might be more focused on practicing positive self-talk, arranging environmental contingencies that are sure to provide reinforcement for attempting to engage a peer, and a separation of the self from thoughts.
Call to action!