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Autism in education: Mom still pushing for General Assembly's attention

Tribune-Star - 3/25/2018

March 25--For the second year in a row, Jenn Kersey has advocated for a legislative summer study committee to look at issues focused on autism and public education.

Last year, a bill passed calling for a study committee to examine autism-related programs and services, but it was never assigned to a committee. Undeterred, Kersey was back in Indianapolis this year for the 2018 session.

The end result was Senate Resolution 21, approved by voice vote on Feb. 26, which urges the Legislative Council "to assign the topic of autism and public education to the appropriate study committee."

The resolution was authored by state Sen. Erin Houchin and Sen. Dennis Kruse; Kruse is chair of the education and career development committee. State Sen. Jon Ford of Terre Haute was a co-author.

For Kersey, who lives in Parke County, it's personal. Her son, Couper, has autism, and the family has seen significant progress through use of the applied behavioral analysis therapy, which focuses on positive reinforcement.

This year's resolution was more general in its wording, Kersey said. The goal is to get the topic assigned to committee and "start the conversation." She'd like to see "the appropriate people and organizations gather around the table and see where we are at with autism in public schools ... and see where there are gaps."

The resources "are out there," she said. "I think we need to come together and talk about what works, what doesn't and how can we improve" throughout the state. In some districts, there may be insufficient training, staff or resources.

Upsurge in numbers

The Centers for Disease Control estimates that 1 in 68 children has autism spectrum disorder -- one in 42 boys and 1 in 189 girls.

According to the Indiana Department of Education, last year, the state identified 15,210 school-age students whose primary disability was autism spectrum disorder; this year, it is 15,721, an increase of 511 or 3.3 percent.

"This has been the trend for the last several years," said Pamela Wright, director of the office of special education, Indiana Department of Education.

These are students who have been identified as needing special education services.

The office oversees special education services for Indiana students, and autism spectrum disorder is one of 15 categories of disabilities.

Local districts must provide services, while the state's responsibilities include monitoring and providing support to school districts; special education is funded through state and federal sources. "Our role is to make sure kids receive a free, appropriate public education," Wright said.

"We like to look at the strengths of students rather than the disability of a student. We are required to look at each student individually and talk about what their strengths and needs are and provide individualized programming based on that," Wright said. Autism is called a spectrum disorder because there is a wide range of abilities and behaviors.

"Every child is different, and we really try to figure out what it is they need to be successful in school," Wright said.

"A lot of our kids with autism are in general education for the majority of their day, and we accommodate their disability in order to allow them to progress through the general ed curriculum," she said. "At the state level, we really try to message the importance of having high expectations for kids with disabilities and providing equitable access to the curriculum so that all kids can have the same opportunities."

The state has partnerships with the Indiana Resource Center for Autism at Indiana University; HANDS in Autism, associated with Riley Hospital and the IU School of Medicine; and the PATINS Project, which connects districts to assistive technology "to ensure all students can access, participate and progress within their general curriculum," according to the PATINS website.

The state has a strong autism network of teachers and specialists who share information, ideas and strategies to work with students who have autism spectrum disorder, Wright said.

"I think the state has come a long way in serving the needs of students ... but we can always do better," Wright said. "There are lots of resources available to schools to support students."

Indiana Resource Center for Autism

Cathy Pratt, director of the Indiana Resource Center for Autism at Indiana University, has witnessed the increase in children diagnosed with autism.

She's been in the field for several decades, and when she started, it was 1 in 10,000 nationally; now it's one in 68. No one really knows why, whether it's increased awareness, better diagnosis or other factors, she said.

And not only is she seeing more children with autism spectrum disorder, "I'm seeing more children who have co-occurring mental health issues as well. We know that anxiety is very common among children on the spectrum, and with anxiety comes depression," Pratt said. "But in addition to that, I also see children who have other co-occurring issues going on. So we have more kids who are coming to us with more complex issues."

With autism, "It's considered a spectrum disorder to signify the fact that there is not one-size-fits-all and the adage is, if you've met one child with autism, you've met one child with autism and the next one will be different," she said. "It really does require using an individualized approach."

At the Indiana Resource Center for Autism, "we are committed to using and promoting evidence-based practices and giving parents and professionals tools to address the diversity of children on the spectrum," Pratt said. The center provides training, consultations and information.

As far as schools meeting the needs of children with autism, "I think we have some school districts that are doing an exceptional job, some who struggle a little bit more, which can be because of diminished resources, difficulty finding staff" and other factors, Pratt said. "There are a lot of dynamics that can impact [a] school's ability to address the needs of these kids."

An Indiana State University survey of Indiana school superintendents last fall indicated that 70 percent of those responding (141 superintendents) reported shortages in special education teachers.

Overall in Indiana, "I think there has been a commitment by a majority of our school districts to improve upon services," Pratt said.

The center's website, www.iidc.indiana.edu/pages/irca, lists district personnel statewide who play a leadership role related to autism spectrum disorder, and it also lists teams that have been trained in districts. It includes other resources to assist families.

Helping everyone reach their potential

Kim Dodson, executive director of ARC of Indiana, says there is "really a focus on schools to make sure they are providing education to students with all disabilities in a way they can be successful after high school."

She believes "some schools do a really nice job of providing resources and accommodations, but others don't."

Now more than ever, she said, "we have a lot more opportunities for students after high school, and we need to make sure they are getting what they need during their school years so they can take advantage of those opportunities" -- whether that means vocational schools, higher education institutions, trade school or jobs.

Through the years, things have improved "dramatically" for all children with disabilities, she said. "We've tried to get away from specific disability legislation."

But to have a legislative committee focus on these issues is a positive, Dodson said. "Anything good for a child with autism is good for children with other disabilities. If it helps one, it will help them all."

Unlocking the Spectrum

Erica Wyndham is regional director of Unlocking the Spectrum in Terre Haute, which provides applied behavior analysis, or ABA, therapy to children with autism. ABA focuses on positive reinforcement, and Kersey says her son has made amazing progress through use of that therapy and technicians.

As an autism advocate, Kersey would like to see improved access to applied behavioral analysis to those who are on the autism spectrum.

If a child struggles with a lesson, ABA can be used to break it down and teach the material a different way that works for that child, said Wyndham, a board-certified behavior analyst; the approach is data based.

ABA requires a medical diagnosis and is funded through insurance, she said. A major challenge, however, is that not many insurance plans cover school-based ABA services. "They say it's the responsibility of schools," but schools typically don't fund it, she said, although there are some school systems in Indiana that have.

Even if insurance won't fund school-based services, or ends coverage, "that doesn't mean myself or a supervisor can't go into a school and collaborate with clients. ... We want to keep our door wide open to give schools the resources they need," Wyndham said. "We want our clients to be successful.

"I think the biggest thing for us and the services we provide is collaboration," she said. That collaboration has been especially strong at Southwest Parke schools, including Rosedale Elementary, where Couper attends.

Principal Diana Spence "has had us come in and do staff training. ... She is so inviting and so welcoming for collaboration. She is looking at us as a resource," Wyndham said.

Sue Loughlin can be reached at 812-231-4235 or at sue.loughlin@tribstar.com. Follow Sue on Twitter @TribStarSue.

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