FAMILY FRIDAY: Indianapolis Mom, Special Needs Advocate Highlights Limited Autism Resources
Today, the Indiana ACT for Families coalition’s Family Friday spotlight is Jamie McCabe, a mother of a son with Autism Spectrum Disorder (ASD) and publisher of Special Needs Living Indy Magazine from Indianapolis, Indiana.
Jamie’s Story
Jamie’s son was diagnosed with ASD at the age of four, but his path beforehand was not smooth sailing. First, he was diagnosed with epilepsy and faced challenges with speech development. After his ASD diagnosis, Jamie had limited resources available for helping her son. Originally, Jamie kept her son in public school, but soon realized that he wasn’t thriving in a traditional classroom environment.
Jamie knew that her son needed one-on-one support. At the time, at-home therapy was her son’s only option. He did this for about a year, with half of the day in school and the other half at home. “As parents, we had to decide what would be the best route for our son,” said Jamie. “We decided that at-home therapy would be better because he needs that one-on-one support.”
Limited Access
When Jamie first enrolled him in center-based ABA therapy, the nearest center was 45 minutes away. Nevertheless, her son was driven to the center twice a day so that he could receive the care he needed. “It’s three hours of your day gone just from driving alone, and we did that for about eight months or so.” As soon as they found a place closer to home, they got him accepted to the center and have loved its proximity ever since. “He has an incredible team and a BCBA who work with him and help him reach his needs,” said Jamie. “The team in general is just a huge blessing. They are really working to create an environment that he enjoys, and he’s happy.”
Now, Jamie can happily say that with the access she was able to attain for her son, he has made wonderful strides in improving his behaviors that caused disruption in the classroom. He is also meeting and reaching essential milestones and is expected to graduate from ABA in the next few years.
Jamie never imagined the day where her son would be able to graduate from ABA therapy, but he has made so much progress that his therapy team has encouraged Jamie and her family to think about ‘what’s next’. “It’s almost like an impossible goal that I never thought he would reach, but ABA has been very life-changing and now he will hopefully be able to take that next step in life,” said Jamie. “We’ve been able to explore more options because of the progress that he has been making and because of the support of his team, helping him to achieve those goals.”
Creating a Community
After her son was diagnosed with ASD, Jamie found herself unsure of where and who to turn to for help. “Navigating through resources and supports, not having local family, and not knowing anyone with children that had special needs, made us feel like we were isolated.” Jamie faced these challenges head-on to get her son the care he needed and, ultimately, made it her career to build a community and share resources so that parents won’t have the same isolating experience when their child is diagnosed.
In 2020, Jamie created her Special Needs Living Indy magazine which allows families across the Indianapolis area to connect with each other and learn a bit more about each family’s story. Her magazine helps families who have children with special needs to feel heard and seen and to feel like they have a place in the community. “This magazine offers families in the community an opportunity to provide hope, inspiration, and resources to connect with others like themselves.
To get Special Needs Living magazine or find additional resources you can here.
Holcomb Administration Considers Cuts to Autism Services
Governor Holcomb and key officials within the Family and Social Services Administration led by Dr. Daniel Rusyniak are understood to be finalizing a plan to cut Medicaid funding for ABA therapy. These cuts, if signed-off on by Governor Holcomb, threaten access to care and would lead to increased wait lists and a decline in treatment efficacy.
As Jamie told us, her son “would not be where he was today if it wasn’t for insurance and Medicaid covering ABA.”
Let’s hope Governor Holcomb gets the message that the plan to enact Medicaid cuts for ABA therapy by Dr. Rusyniak’s FSSA’s Office of Medicaid Policy and Planning is bad public policy, and bad for Hoosiers. It’s time for the Governor to prioritize and consider the needs of the people who rely so heavily on these services, like Jamie and her family.
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Indiana ACT for Families is a broad coalition of Hoosier families, ABA therapists, ABA therapy providers, and stakeholders, including The Arc of Indiana and other advocacy groups, working to advocate in support of promoting access to high-quality ABA therapy services in Indiana. For more information, please visit www.IndianaACT4Families.com.
If you are interested in sharing how ABA therapy has impacted your family, please email [email protected].
For press inquiries, please reach out to [email protected].
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