Ask any parent with a child on the autism spectrum: finding the services they need is not easy. In fact, it can be downright daunting. With so many services available and so much information to sift through, it can be hard to know the best direction to take.
That’s exactly the problem that Meghan Burke, professor of special education at the University of Illinois, is seeking to address in a new NIH-funded research study called SPANS (Supporting Parents to Access and Navigate Services) that uses innovation and technology to help parents find, coordinate and access the services their child needs. “Parents are looking for a wide variety of services and the goal of this study is to provide a one-stop shop.”
Overcoming obstacles to services
As the parent of a 9-year-old boy with autism Burke not only has professional experience with the study’s topic, but she’s also living it.
“With my son Rogan, we’ve found that there are a lot of barriers to getting services. For example, there are logistical issues like getting to appointments and taking time off work. Then you have to find a provider that takes your insurance. Then, once you identify a provider, you have to determine if they are convenient to get to,” she says.
Finding the right provider that your child “clicks” with is one of the most important things you can do, and it’s also one of the most difficult.
“Every child is different, and their needs are different,” says Burke. “The provider may have the right degree or experience, but they may not offer a partnership or demeanor that meshes with your child or your family,” Burke says. “Your child has to feel comfortable with a provider to be successful with them.”
Because your child may need many providers, Burke also feels that it’s important that they work with, instead of against each other. “We prefer if my son’s providers are connected and that they are able to talk to each other,” Burke says.
Another important question parents may have: what services are the most important? “When you get the direction that your child needs, say, six services, how do you prioritize them? How do you know which ones are the most important and will be the most effective? Less can be more, and both parents and children can experience burnout if faced with too much,” Burke explains.
How the study works
Burke’s research study provides participants with a groundbreaking app that helps parents find referrals for up to 25 kinds of service providers. These can include doctors, behavioral therapists, speech therapists, nutritionists and more. The app will populate these resources for users based on geographical location and is available in both English and Spanish.
In addition, you may be assigned to a family service navigator who is the parent of an older child with autism who has experience with the service delivery system. Or you may receive information and training needed to navigate services. Participants also will complete short surveys and participate in interviews for the duration of the program. Plus, to compensate for their time and feedback, those approved for the study can receive a stipend of up to $150.
The SPANS study is open to families with 3-5-year-olds with autism who live in Cook County, Illinois. One important thing Burke wants families to know is that the study is designed to be individualized to meet the needs of the family.
“You meet with your navigator or use the app as much or as little as you want,” says Burke. “We want families to decide how much or how little help they need.”
How to get involved
Participants will be asked to complete a survey to determine eligibility. Complete an online registration form and pre-survey by clicking here.
If you have further questions, you can contact Meghan Burke at meghanbm@illinois.edu.
