Breaking Down Barriers for Children with Intellectual and Developmental Disabilities and Their Families
At first glance, visiting a museum or seeing live theater seems like a fun family outing. But for a child who has an intellectual or developmental disability, it can be a daunting experience. And for their families, one that does not always turn out to be positive.
The sounds and lights of such venues can provide an overwhelming amount of stimulation for children with sensory challenges. For others, a bumpy or cracked pathway from the parking garage to the venue can make it difficult to navigate for a child who uses a wheelchair.
Tracy Jirikowic, PhD, OTR/L, hears these stories from parents all too often. An occupational therapist with a career spanning 25 years, Jirikowic—who is based at the University of Washington School of Medicine—has worked with children having a range of disabilities, including fetal alcohol spectrum disorder, palsies, and autism.
What such disabilities all have in common is that they leave children and their families with barriers to participating in their own communities that others often don’t see or understand. These include an inability to meet the public’s social expectations such as being quiet at a museum or theater—something difficult for children who use alternative methods of communication to express themselves.
Through the years, families have told her and other occupational therapists that they feel judged or unwelcome in certain settings because they’re not following social expectations.
The feedback led Jirikowic to collaborate with fellow occupational therapists across the country. She combined her efforts with Roger Ideishi, JD, OT/L, at George Washington University; Roxanna Bendixen, PhD, OTR/L, at University of Pittsburgh; and Teal Benevides, PhD, OTR/L, at Augusta University.
Together, they built a network of regional stakeholder communities to identify research priorities for addressing barriers to community participation, all with support from a Eugene Washington PCORI Engagement Award. Her team’s goal: make it possible for all families to more easily participate in their own communities and build a roadmap for future comparative effectiveness research.
After convening, stakeholders identified six research priorities for addressing barriers to community participation. In doing so, they not only laid the groundwork for future research, but also developed materials for helping people with intellectual and developmental disabilities (ID/DD, as the research team abbreviates it) and other community stakeholders understand the research process.
“When you think about the disability legislation, there’s legislation that very clearly calls for accommodations, like wheelchair access or a sign language interpreter if you have a hearing impairment,” Jirikowic said. “But we’re trying to place a focus on supporting people who have less visible or invisible disabilities and whose needs for accessing activities may not be fully met by that legislation.”
Not One Size Fits All
A Priority for PCORI-funded Research
Intellectual and Developmental Disabilities (IDD)* was one of two new research priorities included in PCORI’s reauthorizing legislation. IDD was agreed upon as an important area for PCORI to fund new research and was subsequently added to the legislation as a result of congressional negotiations and stakeholder input.
PCORI is paying close attention to Congress’ intent of adding this new research priority and is working to address this topic in a deliberate and responsive way.
*PCORI uses the acronym IDD to represent the same concept that ID/DD represents in the project.
Developmental disabilities are a group of conditions due to learning, language, physical, or behavior impairments. While intellectual disabilities are a type of developmental disability in which people have limits in their abilities to learn at an expected level and to function in daily life, such as in communication.
Approximately 17 percent of US children ages 3 to 17 had a developmental disability diagnosis between 2009 and 2017, according to the National Health Interview Survey. As of 2016, 1 percent of US children in that same age group had an intellectual disability.
The data comes from parents’ reports that they received developmental disability diagnoses from a physician or other healthcare professional. The study looked at the prevalence of 10 developmental disabilities in children nationwide, including autism spectrum disorder, attention-deficit/hyperactivity disorder, and cerebral palsy.
Since there are so many different kinds and combinations of disabilities, it’s challenging to make definitions inclusive and not exclusive, as Jirikowic and her colleagues learned in their project. But like her team, others are focused on improving quality of life for these individuals and their families.
Not only has Healthy People 2020 made health outcomes and promoting full community participation for people with disabilities one of its decade-long priorities for improving the nation’s health, but PCORI has also made intellectual and developmental disabilities one of its new research priorities.
It is a focus with great potential for impact considering that the Centers for Disease Control and Prevention estimates 1 in 54 children have autism spectrum disorder—one of the stakeholder groups represented at community conversations in the PCORI-funded project.
We wanted people with intellectual and developmental disabilities to understand how valuable their input and that of their caregivers can be in research.Tracy Jirikowic, PhD, OTR/L Project Lead, PCORI Engagement Award project
Connecting a Community
Social participation in the community is a critical health determinant for individuals with disabilities. However, there are environmental factors, such as building design and technology that must be considered and navigated in relation to health to provide a meaningful experience.
“When you think about the matrix of people in the community involved in making participation possible, it’s a really big umbrella,” Jirikowic said.
That is why she and her team chose to build research capacity by holding regional face-to-face meetings that brought together parents, researchers, community organization representatives, and self-advocates, adults who have ID/DD.
Together, they discussed and identified the challenges they face around community-based participation.
“I thought it was really important—and we heard this from our stakeholders too—to get all the people who represented different groups together at the table to talk about accessibility, inclusion, and community participation—the issues, the challenges, and the solutions,” Jirikowic said.
In total, the project included:
- Community stakeholder meetings in Philadelphia, Pennsylvania, Seattle, Washington, and Augusta, Georgia
- Workgroups on Communication and Engagement, Research Engagement, Research Roadmap, and Mentoring
- An advisory board with representatives from each region and a stakeholder group, all meeting throughout the project
Taking a regional approach was a must, as each part of the United States has its own infrastructure, unique set of participation barriers, and programming that ranges in its level of development.
For example, consider public transportation. In the Northeast, it’s widely available, whereas in the South, it’s not as well-developed, and there are social stigmas with using it.
Stakeholders identified access to transportation as a potential barrier to participation during their community conversations. After all, transportation can make the difference between preventing versus facilitating community participation in activities.
Classifying Disability and Health
Drawn from the World Health Organization, 2002: The World Health Organization's framework illustrates the complex interaction between health conditions, external environmental factors, and internal personal factors. The framework defines disability as involving dysfunction at the level of participation restrictions, activity limitations, impairments, or one or more of the three. Researchers use the framework because it’s a universally applicable classification that makes research results comparable.
The Multiple Dimensions of Participation
For researchers and people representing community organizations, the conversations were an eye-opener into the world of self-advocates and parents’ firsthand experiences, and vice versa.
Stakeholders revealed that they view the goal of expanding community participation as being applicable to the entire disability community, not just individuals with ID/DD.
They also noted the importance of including diversity throughout the thought process and that participation should be considered a lifespan issue, necessitating research across populations of children, youth, and adults.
In doing so, they advised that multiple methods of communication and communication guides explaining ways to share information with different populations are vital to reaching diverse audiences.
The insight and information stakeholders provided culminated in the development of a research roadmap, which identifies six research priorities and questions. Each addresses participation as an influential determinant of health and well-being for individuals with ID/DD and their families.
“We are very invested in understanding the links between people being able to do health-promoting activities and quality-of-life activities in their communities,” Jirikowic said.
Putting Research within Reach
Jirikowic and her team have continually explored ways to share the project and its outcomes with new communities and with more members of the project’s regional communities.
Shortly after the project’s completion, they launched the Engage All Abilities website which includes the research priorities and other key findings from the project. It’s home to three research training videos for guiding stakeholders in understanding the research process and different roles they can play.
To date, Jirikowic and her team have presented the project at eight conferences, including two in Canada. They also sent email newsletters to all regional meeting participants informing them about the key outcomes and inviting them to engage in future research partnerships.
“Our project was unique in that we we’re really trying to draw people with intellectual and developmental disabilities into the research process, and we worked on accessible communication strategies,” Jirikowic said. “We wanted people with intellectual and developmental disabilities to understand how valuable their input and that of their caregivers can be in research.”
To keep the research moving forward, the team has been working to advance three of their stakeholder-determined research priorities: measuring success, mentoring organizations, and information access.
Plans to expand their national stakeholder network into new communities in the Minneapolis and New Mexico regions are also in the works, with support from a second PCORI Engagement Award. The project will give special attention to culturally and linguistically diverse communities, and diverse abilities.
Read about two of the project’s stakeholders in the second story in our series on intellectual and developmental disabilities research. There, through text and audio pieces, we spotlight a self-advocate and a parent behind the project, who also have made strides in their own communities to increase participation for individuals with ID/DD and their families.
By Melissa Schenkman, Writer and Editor
Posted: September 8, 2020; Updated: November 13, 2020
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.