Specialized training helps low-resourced parents of children on the autism spectrum better navigate systems of service, and even equips them to help other families in similar situations, a recent study has shown.
After training to become autism navigators, parents demonstrated greater knowledge about available autism services and other relevant information, including how to overcome administrative obstacles.
“Parents need advocacy skills; when someone says ‘no,’ how you can push past that,” said lead author Meghan M. Burke, Ph.D., a professor of special education at the Vanderbilt Peabody College of Education and Human Development.
“Our participants have that shared lived experience and understanding – not just of the services and how to get them but also of the frustration and emotional toll and stress.”
She gave the example of SSI, explaining that, in the United States, two-thirds of applicants are rejected when they first apply.
“You have to appeal and there are four types of appeal. It’s a gatekeeping exercise,” she said.
Peer-to-Peer Approach
Most programs being funded by the National Institute of Mental Health (NIMH) to provide navigator training target hospital social workers for those classes.
However, Burke’s team took a different approach – training low-resourced parents of children older than 5 to support other low-resourced parents with a child between the ages of 3 and 5.
Children from birth to age 3 generally get early intervention services, she explained.
“At 3, you’re supposed to transition to the school system, but from 3 to 5 is murky,” she added. “You’re usually not getting all the services you need from the school, and you have to rely on private services. These parents really need help.”
Nineteen parents with children older than five years completed all requirements for the study. Ninety-five percent of the parents were married, and their average age was 48. Most (63 percent) had minority backgrounds, and most of their children with autism were male (68 percent).
“We limited participation to parents with children over 5, because it meant they already had considerable experience in navigating service systems to prepare them to help parents with younger kids,” Burke said.
Advantages to Training
Having more experienced parents train less experienced ones helps the learners establish a rapport and builds trust.
“Our participants have that shared lived experience and understanding – not just of the services and how to get them but also of the frustration and emotional toll and stress,” the researcher said.
In conceptualizing and developing the training program called SPANS (Supporting Parents to Access and Navigate Services), Burke worked closely with colleagues at The Family Resource Center on Disabilities in Chicago. Every state has similar resource centers for families with children who have disabilities funded by the federal Department of Education and typically is staffed by parents of children with disabilities, she explained.
“Developing the training was a partnership with those colleagues the whole way through, starting with how we framed the question,” Burke said. “We really wanted to think about how we can make it easier for families to access services, especially families with systemic barriers to access.”
SPANS participants joined Zoom training sessions facilitated by two low-resourced parents of a youngster with autism who was age 5 or older. In this study, “low resourced” meant the primary caregiver had a high-school diploma or less, was unemployed, or the family received government assistance.
Promising Results
“With a small-medium effect size (ES= .38), participants demonstrated significantly improved knowledge about autism services (p=.05). With medium effect sizes, participants demonstrated significantly improved advocacy for other families and advocacy for systemic change (ps=.02 and .05 respectively),” the authors wrote. The effect sizes were .51 for peer advocacy and .39 for systemic change.
Burke plans to proceed now with a randomized controlled trial to see if the advances made by parents of the three-to-five-year-olds will lead to measurably better outcomes for their children.
Each of the 12 sessions began with a short introductory video, with questions invited afterwards. The program covered 25 services and explained how to prioritize based on the family’s specific needs.
“We want families to feel empowered. You run the risk of families feeling overwhelmed,” Burke said.
Topics included, among others, school services, evidence-based treatment services, assistive technology, and Supplemental Social Security (SSI) for children and families. They also included identifying barriers to service, special recreation, respite for caregivers, and providing emotional support to families.
The facilitators would introduce a local content expert, whom the parent- facilitators had chosen. That expert would present information about their designated subject and a question-and-answer session would follow.
Policy Changes Needed
An uptick in NIMH support for navigator programs shows funders are becoming aware of the obstacles facing families, Burke said.
“It signals to us that if these programs are successful, legislators might be more apt to recognize how complicated and multilayered the system is, and that we need to find ways to streamline it and make it more accessible,” she said.
Burke added that as a parent of a child with autism, even she finds the system frustrating, confusing, and difficult.
