Autism Center Feasibility Research Study
Research and Development of an Autism Center for a Non-Profit Early Intervention Agency
*To protect the privacy of clients and adhere to Health Insurance Portability and Accountability Act (HIPAA) standards, there will be no identifying information or materials in this case study.
Project Overview
My Role
Lead researcher, Product Manager
Duration
13-month Team Healthcare Research Project
Background
The most recent CDC data shows that autism affects about 1 in 44 children.
Chances are high that someone you know is affected by autism. Unfortunately, how easily a child is diagnosed depends on the state the child lives and the type of health insurance they have access to.
As an early intervention provider working with young children, my colleagues and I noticed that families were often on long waiting lists of 12-18 months for autism evaluations. The wait is even longer for low-income families as there are limited choices of autism centers that accept Medicaid.
Why is early diagnosis important?
It is well documented by research that early diagnosis leads to early support for the whole family, which is critical to improved outcomes.
Approaching stakeholders with an idea
To solve this problem, I approached the Executive Director of the early intervention agency where I worked with the idea of creating an autism center. The idea was brought to the Board of directors, who were supportive of the idea and asked for research data to answer the following questions:
Is there a need for an additional autism center in our County?
Does creating and operating an autism center align with agency mission?
What are the budget requirements?
Problem
Families struggle to obtain autism evaluations for their young children due to shortage of autism centers in some areas and long waiting lists at many agencies. They need more choices for evaluation centers, especially centers that accept Medicaid, for efficient evaluations and subsequent support services in a timely manner.
Result of research project
Our research led to the creation of an autism center as a new service for children and families in the county, and as a new business for the agency.
Research goal
To research and assess the feasibility of creating a user-centered autism center in order to help shorten evaluation wait times, especially for low-income families.
Racial disparities in autism diagnosis
Initial research through published literature from the CDC Autism and Developmental Disabilities Monitoring Network resulted in the finding that although Autism Spectrum Disorder occurs among all racial, ethnic, and socioeconomic groups, some racial disparities are evident in terms of access to services, especially in minority groups. More recent research from Autism Research also highlights the importance of closing the racial gap in diagnosis rates.
Compounding the problem of access
Many counties do not have autism centers, requiring families to travel long distances for an evaluation
Average wait times for most autism centers is 12-18 months, a very long time to wait for young children
Most private autism clinics have much shorter waiting lists, but do not take Medicaid, limiting access for low-income families
How does this benefit the agency?
The National Institute of Health supports the creation of autism centers, also called Autism Centers of Excellence, in order to foster collaboration between agencies and to fund research. Becoming an autism center would not only increase collaboration with other autism centers in the state, but also elevate the visibility and increase fundraising opportunities for the agency.
Gathering quantitative data
In order to discover whether there is a need for an autism center, we first needed to gather data on children enrolled who were affected by autism. The numbers were gathered over three quarter periods from 2019 to 2020.
As the agency had not collected this kind of data before, I created an online survey that was sent out quarterly to service providers (occupational therapists, physical therapists, educators, family counselors) to track the number of children on their caseloads who met the following criteria:
Received an autism evaluation during the current reporting quarter
Completed an autism evaluation prior to the reporting quarter
Currently on a waitlist for an autism evaluation
Recommended or will be making a recommendation for an autism evaluation
Analytics revealed children affected by autism made up between 6%-14% of enrollment each quarter
Survey results indicate that for a period of three quarters, there were a total of 187 children on the waiting list for an evaluation. This numbers may not be large, as they made up between 6% to 14% of enrollment, but for very young children and their families, the data indicate a need to address the waiting list.
Contextual Client Interviews
To understand families’ experiences through the process of autism evaluations, the team conducted one-on-one interviews with 9 families using a parent questionnaire.
Key Insights from qualitative research
Families prefer flexibility in the evaluation
Some families prefer the long evaluation process split over multiple days, others prefer it done in one day. Many families preferred in-home evaluations, while others preferred a neutral office environment.
“In the center it’s all novel. They always ask, ‘do they act like this at home?’ With an evaluation at home, the evaluator may get more of a feel for my child’s actual daily behavior.” —parent
“I felt like it was a good opportunity to see him in a different setting, see how he responds to someone new in a less familiar environment.” —parent
Parents appreciate support from a familiar provider
“As a parent I had no clue about autism but the therapists helped me to spot the red flags for my child and helped me take the step to get an evaluation.”—parent
“I had doubts, I remember thinking I don’t want to label him. I was scared. So having someone listening to your doubts and fears and know what to say to that really helped me move forward.”—parent
Competitive Analysis
As choices for autism centers that accept Medicaid are limited, the team interviewed 3 different autism centers to better understand their processes for autism evaluations, and to learn what worked and what did not work. We found that
Processes vary between different agencies: Some autism centers complete their evaluation process in one day, some take three separate days
Center creation requirements: We found that agencies need to apply for the State Health Department Center of Excellence Status in order to become an autism center
Common diagnostic tool: The most commonly used diagnostic tool was the Autistic Diagnostic Observation Schedule (ADOS)
Who are we trying to help?
To help guide design decisions, I created a client persona based on typical experiences of families going through the autism evaluation journey.
What does the family go through?
The family journey map helps to further understand the major steps and emotional journey a family goes through during the evaluation process. The emotions can vary depending on the family but most interviewees reported neutral or negative emotions such as worried, frustrated, or stressed.
How we can help families?
Based on insights from the Family Journey Map, we identified the following key opportunities to address
I created the following questions to help guide our design process:
How Can We…
Reduce waiting time for autism evaluations for young children in the country?
Create a streamlined process for autism evaluation so we can reduce family stress?
Ensure equity in access to autism evaluations?
Meet the needs of families that require flexibility in evaluation process and locations?
Key Research Results
Based on quantitative and qualitative research conducted by the team, it was found that
There is indeed a need for an autism center. Even with reduced enrollment due to Covid-19 restrictions, at least 47 children were on the waiting list each quarter for an evaluation. The numbers represent anywhere from 6%-14% of enrollment, which does justify creating a solution to support the affected families.
Creation of autism center does align with agency mission. Creating and operating an autism center aligns with agency mission to partner with families and community to support young children’s success.
The autism center can be created without additional burden on agency budget. The team was able to collaborate with the Finance Department to create a budget proposal to create the autism center under budget constraints, and with a long term goal of generating revenue for the agency.
Next Steps
The following recommendations were presented to the Board of Directors based on synthesized research:
Staff Training: Provide training to staff members interested in providing autism evaluations in the most commonly used tools.
Service Design: Collaborate with Finance and Administration departments to streamline the evaluation process to decrease family stress in the evaluation process.
Space Design: Families will be given the option of having evaluations in the home, decreasing the need for much additional office space.
Reflections
As this was the first time the agency collected data regarding autism, there was some difficulty ensuring accuracy in the data and survey design as well as methods of data collection. Covid-19 restrictions also impacted enrollment numbers, which affected the data as well.
I feel very proud that through interdisciplinary collaboration, a new business was created for the agency that aligns with its overall mission to better serve children and the community.