Blog # 28- Adopting Experience-Based Co-Design (EBCD) To Enhance The Quality Of Autism Services

Establishing positive rapport between providers of autism services and individuals and families impacted by Autism Spectrum Disorder (ASD) is essential towards establishing positive service delivery experiences. Experience-based co-design (EBCD), which originated, “in the UK, brings together narrative-based research with service design methods to improve patient and staff experiences of care” (“Experience-Based Co-Design”, 2020). Implementing a humanistic view of the provision of autism services will demonstrate how the ideas, thoughts, and emotions of both individuals and families impacted by ASD (autism spectrum disorder) and autism service providers influence the outcomes of service delivery experiences. 

The first step of the model is to establish settings and methods of data collection and outcome measurements. Autism would be considered the primary focus with the secondary focus being the type of services for which autism, the primary focus, is being measured. Some examples of service types include but not limited to: special education services, counseling services, housing services, nutrition services, speech and language pathology, occupational therapy, physical therapy, vocational rehabilitation, personal care, homemaking, and applied behavioral analysis (ABA) therapy services. The tertiary focus would be the physical settings in which the primary focus, autism, and the secondary focus, the service types, are being measured. Physical settings generally include but not limited to: homes, schools, hospitals, clinics, counseling centers, and habilitation settings. 

Understanding the service delivery of all autism service providers is important in understanding the infrastructure and the operations of the work that is performed daily in relation to the service type and the physical setting and how they influence ideas, thoughts, and emotions of personnel. The experiences of a professional providing autism services in one environment will be different than another professional who is also providing autism services in a different setting. For instance, one professional might work in a hospital setting while another professional works in the home setting. Different environments will trigger the negative and positive care experiences. When we are working with individuals with autism, expect there to be differences in sensation and perception. While one professional might be working in a home setting with an individual with autism that has an established daily routine and finds comfort, another professional working with an individual with autism in a hospital setting may embrace unexpected situations that impact patients, families, and medical personnel, especially when crises and medical emergencies develop. What we will have to do is establish clear and concrete measurements and assess the ideas, thoughts, and emotions that autism service providers are experiencing, giving them the opportunity to speak on strengths when it comes to them and their involvement with working with people with autism, and what areas in terms of service delivery need to be improved when working with individuals on the autism spectrum. 

When gathering the care experiences, both negative and positive, of individuals with autism, we have to realize that while some individuals with autism are able to communicate themselves, some individuals will require additional support in communicating feedback. Some individuals with autism might need to use an augmented communication device, especially for those who cannot verbally communicate their concerns and needs. Some individuals with autism need the presence of an advocate, a family member, a friend, or a guardian to speak on behalf of the individual with autism as long as the individual with autism provides consent. The only exception to this of course is if declared by the individual’s state as determined by the legal system that the individual is not able to consent and/or speak for themselves. We need to be observant of body language, expressive language, social cues, or any alternate means of providing communication whether that be audio-recorded or in writing for individuals with autism to provide feedback which would include their care experiences with autism services, and what they think needs improvement in terms of enhancing the quality of autism services for all individuals diagnosed with autism spectrum disorder (ASD). Autism service providers, with consent from the individuals, should also keep audio and video recordings of service deliveries so the providers can understand what is effective and what needs improvement in order to strengthen their efforts in promoting the best care and support to all individuals on the autism spectrum. 

Autism service providers and individuals diagnosed with autism spectrum disorder (ASD) should then collaborate in joint meetings to identify the strengths and challenges associated with the quality of autism services being provided. Sharing lived experiences among both individuals on the autism spectrum and from autism service providers will enhance the humanistic perspective of how to establish an effective partnership in the hopes of achieving the goal of increasing positive service delivery experiences. Establishing priorities and projects utilizing quality assurance and quality assessment methodologies is essential, and this can be done by breaking down groups of individuals and providers into smaller co-design teams. As an example, group A might focus on implementing augmented communication devices to strengthen the communication and feedback of autism services for individuals in which cannot communicate, group B might focus on implementing autism awareness modules and training for autism service providers, and group C might focus on helping individuals on the autism spectrum strengthen their self-advocacy and self-determination skills. Each group would utilize qualitative and quantitative approaches to collect the data and the information needed to generate prototype and test potential solutions to the challenges and issues associated with effective service delivery of individuals on the autism spectrum. Groups would need to be mindful of the type of services as well as the physical settings for which they are working to implement the prototypes and testing potential solutions. Funding and grants from state and federal agencies and organizations is critical as well. 

Once solutions are generated, and they are determined to effectively enhance the quality of services for individuals on the autism spectrum, co-design teams should highlight those strengths and determine areas that may be improved for the solutions that were adopted or created. Co-design teams should continue to assess new priorities and establish new measurements and brainstorm new prototypes and ideas for possible solutions. We need to promote our best efforts to improve the quality of all autism services and seriously consider utilizing the experience-based co-design (EBCD) process. 


Experience-Based Co-Design of Health Care Services. (2020). Institute for Healthcare Improvement (IHI).