For families with autistic children, burnout is real

As the older sister of an autistic 12-year-old girl, I am one individual among the many families involved in the fight for disabled rights.

My first-hand experience with the procedural processes involved in securing autism treatment and acting as an advocate for those in need consumes much of my life.

I am a full-time student at UNLV, where I also have a role as a researcher. I enjoy my classes and look forward to analyzing documents and writing reports. However, when I return home, I am the caretaker for my sister.

My responsibilities include attending monthly school progress meetings, writing progression charts and supervising eight hours of Applied Behavioral Analysis sessions per week. It's a lot for a person to juggle all these responsibilities, especially if you are one of two siblings in a low-income, single-parent household, with a mother who works long hours with little time off.

For those who are not familiar with autism programs, ABA therapy is the most common form of treatment for an autistic child's social progression.

Therapy is home-based and extends beyond a child's special education curriculum. It focuses more on a child's social and behavioral progression, as opposed to their cognitive development. For instance, at school a child would learn how to read stories and solve math problems. With ABA therapy, children learn how to count money and talk on the phone; important skills that come naturally to some children but require practice for others.

With the passage of Nevada Senate Bill 174, legislation that requires audits of ABA services, 2019 is a year of action for the hundreds of Nevada families with autistic children. Audits for this treatment pave the way for reform of the quality of ABA therapy provided to families and opens the door for further legislative discussions on ways to best utilize state funding for this therapy, which covers most of a child's treatment costs.

Reform, however, requires that all Nevada residents, not just families with autistic children, educate themselves on the structural, funding and legislative aspects of autism treatment. By doing so, we as Nevadans can take a stand against structural injustice for disabled children, amplify families' exhausted voices and provide hope for the future of Nevada ABA therapy.

Among the current challenges for families is a shortage of certified individuals to deliver ABA therapy. That shortage, combined with many parents' unfamiliarity with existing laws, can frustrate even determined family members in obtaining services for their children.

Then there are the high costs associated with those services. For families of a high-functioning child, eight hours of weekly ABA therapy costs approximately $15,000 to $30,000 a year.

The SB174 audit seeks to address such issues and "hopefully" prompt discussion of solutions during the 2021 legislative session.

So as the auditing process plays out and the session approaches, families with autistic children could use Nevadans' support as solutions are discussed.

Those who want to learn more about the issue and become part of the solution can follow the activities of the state ABA Board or attend informational sessions offered by such nonprofits as the Grant a Gift Autism Foundation and the Autism Coalition of Nevada. There, they can gain information that will help them engage with state legislators.

The fight is long and difficult, and families like mine are exhausted from carrying the weight of their child's development due to the complexity of Nevada legislation. Despite their disabilities, autistic children have immense potential to shape our future. With this, the time to come together to help our autistic youth is now.

Jessica Balistreri is a UNLV senior economics major in the Brookings Public Policy minor.