It can be difficult for families of children with autism, particularly when it comes to identifying and accessing services and therapies for autism. A new project by the University of Illinois Urbana-Champaign, funded by The National Institute of Mental Health, is in the works to help parents navigate what can oftentimes be an overwhelming experience.
The project — known as the SPANS (Supporting Parents to Access and Navigate Services) Study — focuses on Cook County families of children with autism ages 3-5 from low-resourced communities, says Meghan Burke, Ph.D., Professor of Special Education at the University of Illinois Urbana-Champaign. This includes families that may identify as low income, those that receive any type of governmental aid or assistance, or families where the primary caregiver is unemployed or did not complete college.
Supporting parent advocates
As the mother of a child on the spectrum herself, Burke has made it her life’s work to examine how parents advocate for their children with disabilities.
“This is my area of expertise, and I still find myself struggling at times,” she says. “I know parents are bombarded with different opportunities and different program options for their kids. It’s hard to know which path to take. I mean, there are only so many hours in a day. It’s a lot of pressure to figure out, on your own, which therapy or program or opportunity to choose for your child that will bring them the most benefit.”
“It should not be this hard for anyone to identify, connect with, and access the services our children need to thrive,” Burke adds.
Families selected for the SPANS Study will be divided into two groups, Burke explains, with each respective group receiving differing support and resource options to guide them through the process of accessing and securing autism services and therapies for the children.
One group will be provided with a family services navigator and a smartphone app showcasing service needs and relevant referrals to providers, Burke says, and the second group will receive information training and referral services to service providers. Both groups will be supported, guided, and empowered to gain the skills and experience necessary to independently advocate on behalf of their child throughout the study period, adds Burke.
Selected families will complete surveys about their knowledge of available autism services, service needs, and advocacy. SPANS participants will be compensated, up to $125.
“The end goal is to use the collected research to improve service delivery,” Burke says.
Peer support for navigating therapies for autism
It’s always nice to connect with fellow parents of children with autism, says Burke, which is why some families selected for the SPANS study will be matched with a family services navigator that also happens to be the parent of an older child on the spectrum. Family services navigators also identify as coming from a low-resourced community.
“We wanted to ensure that our study participants could benefit from a shared and common bond with their navigator,” Burke explains. “It’s always nice to connect with another individual who has had that journey, so that is a really critical element of the project.”
“This is a nice study for a lot of reasons, particularly because we are offering support to families in both groups,” Burke says. “So what would be nice to see is that for some people providing the information training and referral is enough for them to access services for their children.”
“And for others, they might do better with the navigator and the app and a little bit more support. If we can figure out who falls in which category, then we can provide more targeted resources to those who need them, in the way they need them, for the best outcomes,” she adds. “I think both approaches are going to work. It just, I think, will come down to who they work for.”
‘If in doubt, reach out!’
“Parents interested in potentially participating in the study would then directly contact me or my study coordinator to learn more about the project and determine eligibility,” says Burke, adding that she and her study coordinator encourage Chicago Parent readers who may have friends or family members who are parents of children with autism to reach out, even if they live outside Cook County or may not otherwise qualify for the study.
“It is helpful for families interested in the SPANS Study to reach out whether or not they qualify in order to gauge interest, Burke explains. “If in doubt, reach out! At the very least, we may be able to point these families in the right direction.”
Burke also stressed that it’s important for families to know the SPANS Study is not just about collecting data. Says Burke, “We are trying to come at this study in a way to see if it’s effective to scale up the resources available to parents, and as a parent of a child with autism myself, this is something I think could be really meaningful for family.”
Are you interested in being a part of this project? Complete the form in English here or in Spanish here. You can also reach out to Dr. Burke directly at [email protected] or 217-300-1226. Content sponsored by University of Illinois Urbana-Champaign.