By: Nechame Cziment, BCBA
“Alone we can do so little, together we can do so much” -Helen Keller
Puzzle pieces have become universal symbols for autism. The puzzle pattern reflects the complexity of the autism spectrum. A recent study released on Autism Spectrum Disorder (ASD) in JAMA Psychiatry concluded that individuals with ASD have a higher rate of co-occurring disorders than the general population. This study further emphasizes the complex needs of individuals with ASD and begs providers to answer the question, “How can we be sure these needs are being met?”
The answer to this question lies in coordination of care.
What is Coordination of Care?
Coordination of care involves bringing together various providers to coordinate services, patient needs and information to help better achieve the treatment goals and improve the quality of care. Research has shown that care coordination increases efficiency and improves clinical outcomes as well as patient satisfaction with care. Care coordination is not only a factor to consider in the treatment of ASD rather, it is fundamentally critical to the provision and management of ASD services.
Who is Involved?
An individual with a diagnosis of ASD may have many providers that are involved in treatment. Since a diagnosis of ASD usually affects the entire family not just the child, the child and his/her family network are at the center of the collaborative team.
Coordination of care should involve all members of the child’s ASD treatment team, including medical, educational, psychological, and other mental health providers and therapists.
The primary care physician is oftentimes the referral source who may be following the child’s progress and response to treatment and is a critical member of the team. The diagnostician who may either be the pediatrician, developmental pediatrician, psychiatrist psychologist, etc. remains a part of the team as long as they continue to treat the patient or reevaluate for responses to treatment or other health related matters. Speech/language therapists, occupational therapists, physical therapists, feeding therapists, and other related service providers should also be involved. Special education providers such as the classroom teacher, IEP coordinator, school psychologists, special education directors/administrators, and other school personnel also play a key role. Finally, any counselors or psychologists who treat the patient should also be included in the coordination of care plan.
What Does Coordination of Care Look Like?
A common misconception that parents and caregivers often have is that providers and professionals working with their child are separate entities, having nothing to do with each other. This however, is not the case and this mindset may prevent treatment from being implemented efficiently.
Let’s look at an example to illustrate this point:
Max is a 13-year old boy with a diagnosis of ASD, anxiety and Attention-Deficit/Hyperactivity Disorder (ADHD). Max attends a special education classroom and also receives ABA services in a clinic 5 days a week. In addition to that he also receives Speech therapy and Occupational therapy twice a week. Max is also being followed by a psychiatrist who prescribed medication to address his anxiety and ADHD symptoms.
In school, Max is having a difficult time regulating his behaviors and interacting with his peers in an appropriate manner. He is punished multiple times a day for being off task and is even sent home occasionally due to his aggressive behavior. During his ABA sessions, Max is learning skills to address his social deficits and how to manage his behavior. Max’s parents are giving him the prescribed medication every day as indicated and then report back to his psychiatrist at their follow up appointment. During Speech therapy, Max is able to focus and he was reported to have great problem-solving skills when presented with a contrived situation. During Occupational therapy sessions, Max’s therapist is focusing on strengthening his fine motor skills to help him improve his handwriting skills.
The above scenario represents an approach in which each provider is working as a solo provider, targeting areas of deficit in isolation to treat the same child.
Now let’s look at a more coordinated approach to the same scenario.
Max’s BCBA®, coordinates with the school to share strategies and evaluate progress and offers to train staff on the implementation of a reinforcement system or behavior intervention plan to address the aggressive behaviors. The BCBA®, also shares the data as well as the results of the school coordination with the parents and trains the parents in these procedures to further generalize the skills learned to the home setting. The BCBA®, creates a simple data collection tool that stays with Max throughout the day and is completed by the school team, ABA team, parents, Speech therapist and Occupational therapist to gather information regarding behaviors related to the medications he is taking. The parents share this information with the psychiatrist at their next follow up meeting. The Speech therapist shares the terminology that is being used during the session so that it can be more consistently applied when providing feedback to Max for pertinent social scenarios. The Occupational therapist shares strategies with the school team, ABA team, Speech therapist and parents to help Max with focusing and other relevant issues.
As illustrated in the example provided above a collaborative approach results in a more streamlined and effective treatment. The child is less likely to become confused about how to use the skills taught in therapy sessions to achieve his goals.
The benefits of a coordinated approach to care are countless. But what can be done to ensure that coordination of care is actually happening? The following are a few steps that parents and providers can take to ensure coordination between a child’s treatment service providers:
- Knowing the treatment team – get to know the group of individuals providing services or care for the child.
- Consent – make sure each the proper releases/permission to communicate have been set up to allow providers to communicate with each other.
- Plan – develop a specific coordination of care plan that outlines the specific individuals who will coordinate care, at what frequency and when, and what the goals of the coordination efforts will be.
- Implement – work together to implement the coordination of care plan.
- Revise – members of the child’s treatment team may change from time to time, and the need to coordinate care may change over the course of treatment. Regularly revisit the coordination of care plan and revise and adjust as necessary.
- Report back – keep everyone informed of the results of the coordination of care and document those efforts.
- Plana-Ripoll O, Pedersen CB, Holtz Y, et al. Exploring Comorbidity Within Mental Disorders Among a Danish National Population. JAMA Psychiatry. 2019;76(3):259–270. doi:https://doi.org/10.1001/jamapsychiatry.2018.3658
- SAMHSA-HRSA Center for Integrated Health Solutions. Care Coordination. Retrieved from https://www.integration.samhsa.gov/workforce/care-coordination