Today, the Indiana ACT for Families coalition’s Family Friday spotlight is Amanda Leonard from Delphi, Indiana. Her son’s experience with Autism Spectrum Disorder (ASD) and ABA therapy inspired her to pursue her masters in Applied Behavioral Analysis (ABA) therapy at Purdue University.
Amanda’s son was diagnosed with autism around the age of two. At the time, she was a fourth-grade teacher, but had to eventually quit teaching to take care of her son full time due to the unique demands of having a child with autism. Before her son was able to start therapy, he was facing challenges with his ability to communicate and socialize. Amanda said that trying to navigate next steps after her son’s diagnosis was “daunting.” “It’s stressful waiting when I need these services and my child has yet to talk.” Amanda’s son made huge improvements once he began ABA therapy. Amanda says she “saw a huge difference in his language and socialization and communication with me.”
Long Wait Lists Restrict Access
Her family’s experience with ABA therapy wasn’t always that easy. After waiting for her Medicaid disability waiver to be accepted, Amanda’s family waited more than a year, in total, to finally receive ABA therapy. “Once a therapy center opened up in our area, we finally had the opportunity to get ABA therapy for my son,” said Amanda. “We had already been on a waitlist for another center for nearly 18 months, so we wanted to do everything we could to make it happen.” Amanda had seen the impact that long wait times had on other families. “I know some of my friends, they are waiting six to nine months, sometimes almost a year, just to get into a center.”
Newly released statistics from the Centers for Disease Control and Prevention (CDC) report that 1 in 36 kids have been diagnosed with ASD across the United States. This underscores the demand for access is increasing; not decreasing. For the State of Indiana to even consider cuts to reimbursement that could lead to increased waitlists is not only unacceptable but poor public policy.
As more and more families have to wait for this therapy, their young children miss the crucial window for early intervention. “Early intervention is key, but if it is taking a year, sometimes more, just to get the help we need, that’s a year of lost time,” said Amanda. “It’s like a waiting game, but it’s not in our favor at all.” Amanda described it as a “huge relief” that she was able to get her son into therapy and said the Medicaid waiver helped prevent her family from incurring “Tens of thousands of dollars’ worth of medical debt, just so that my son can have an equivalent education as other children.”
The Impact of ABA Therapy
After experiencing the long wait time her family endured before gaining access to ABA therapy and seeing firsthand the incredible improvements in her son, Amanda had a whole new perspective. “I decided that I did not want to go back to education,” said Amanda. “I wanted to do more and learn more.” Amanda got accepted to Purdue where she is actively pursuing a degree in Applied Behavior Analysis Therapy. “After working with all of my son’s therapists, as well as his case manager, I was left asking myself ‘What else can I do for my son?’” said Amanda. “It’s an important cause and it needs to be shouted to the streets. So many of our kids who have ASD need our help.”
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.
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