When Ava Bullard was two and a half years old, she was diagnosed with autism spectrum disorder, a developmental disorder that impairs the ability to communicate and interact to varying degrees. Those with autism commonly struggle with social and conversational cues, as well as physical hypersensitives.
At two years old, her mom, Anna Bullard, took Ava to three different doctors because she was still unable to physically or verbally communicate, despite babies on average beginning to talk when they are 12 to 18 months. The conclusion was that Ava would likely always struggle with communication her whole life and would need special education.
"The [doctors] just wanted me to put her on medication immediately," says Anna. "But I decided I wanted to give Ava the chance to meet her potential through therapy. And Ava always exceeded the expectations of any therapist that saw her."
Now, 16 years later, Ava is a second-year biology major at the University of Georgia and is considering medical school, thanks in part to applied behavioral analysis therapy. But while life changing for Ava, this path came at a high financial cost.
Care that makes difference
ABA therapy helps children and adults learn positive behaviors and reduce harmful ones while building communication and social skills. Patients learn to understand how to react to an event such as a verbal command or request and the consequences of their reaction. For example, if a teacher instructs a child to clean up their toys, instead of saying "no" and getting in trouble, the child may learn to ask for five more minutes of playtime and in turn, get a kinder reaction from their teacher. The child still expressed their needs but more effectively.
Within the first couple of weeks of ABA treatment, Ava was using sign language, and Anna noticed that Ava cried far less now that she could communicate her needs. By the time Ava was in second grade, she could communicate verbally, she no longer needed to see her therapist regularly and her weekly ABA treatment came to an end. However, this progress didn't come cheap.
The state of Georgia, where the Bullard's lived, did not require insurers to cover treatments for autism at the time — and given that ABA therapy can range from $62,000 to nearly $250,000 per year, treatment is hardly affordable for the average family. Anna's family maxed out their credit cards and sought financial help from extended family members.
"I thought about how other parents are dealing with this, not just me," says Anna. "Every parent just wants their child to be able to be happy."
Anna and Ava would go on to advocate for legislation that required insurers in Georgia to provide coverage for a range of behavioral health therapies for autism spectrum disorders for up to $35,000 a year. Ava's Law, passed in 2015, was groundbreaking and took seven years of hard advocacy from Anna and Ava at the state capitol. Ava was just 10 years old when Ava's law came to fruition. She didn't receive coverage for her treatment, but even as a kid she knew other children should.
"I probably wouldn't be where I am today without ABA therapy," says Ava. "I just think that is the best option for therapy. And everyone who is affected by autism deserves the best treatment."
Something is broken
Americans with autism still struggle to access what they deserve, as states and insurers skimp on coverage, says Julie Kornack, founding board member of the National Coalition for Access to Autism Services and chief strategy officer at the Center for Autism and Related Disorders.
Kornack advocates for nationwide policies that would increase access to mental health services for people with autism, but from what she's seen, a lot of insurers are violating the Mental Health Parity and Addiction Equity Act, which requires insurers to offer the same level of coverage for mental health services relative to what they offer for medical and surgical services.
"We see all kinds of limits in health plans that violate the law, such as limiting how much treatment someone can receive and how long treatments can last," says Kornack. "Criteria that you wouldn't see on the medical or surgical side."
Dr. Hannah Rue, chief clinical officer at ABA therapy provider LEARN Behavior, has worked with individuals with developmental disabilities for over 20 years. She has noticed insurers limit coverage to those 12 years old and younger and refuse to cover more than 10 hours of treatment a week, even when she insists a patient needs 20 hours. This is illegal.
"It's problematic because it's like a physician recommending a certain dosage of antibiotic and an insurance company limiting the dosage," says Dr. Rue. "Your quality of life will deteriorate, and the same thing happens with individuals who are dealing with autism."
And without adequate coverage, a child may never even get a diagnosis, let alone treatment. The CDC estimates that one in 36 children in the U.S. are diagnosed with autism, but there may be far more who go undiagnosed due to a lack of resources. A formal autism evaluation will likely cost caregivers between $800 and $5,000, according to health benefits provider Mira. On top of that, Dr. Rue has seen waitlists filled with 1,000 people looking to be tested.
Insurance companies like Aetna and UnitedHealthcare have been sued for millions for violating the parity act and restricting behavioral health care coverage — but patients shouldn't have to file lawsuits or create a law in their quest for care, underlines Kornack.
"Those delays force you to lose critical time when a child could be accessing services that help them overcome [developmental] delays," says Kornack. "And a child who is already falling behind will just continue to fall behind."
No one has to be left behind
But there's more that can be done.
Rue and Kornack agree employers could make a difference for autistic people early on by ensuring workers and their dependents have access to health plans that offer substantial coverage for therapies like ABA. Employers should have conversations with their benefits brokers about what that coverage looks like and know whether an insurer has a history of limiting treatment.
Additionally, employers should continue to make their work cultures more inclusive for autistic and other neurodivergent talent. As Ava looks ahead to the next phase of her life, she does have some trepidation around finding a work culture that will accept her. She isn't sure whether or not to check "yes" to having a disability.
"There is a possibility of [employers] saying they don't want to hire me behind closed doors and I would never know that," says Ava. "It's a challenge whether to put 'yes' or 'no.'"
Dr. Rue advises employers to first consider whether they are truly letting people show up to work as they are, or if certain biases inform how they imagine the workplace. Because if company leaders are critical of how people communicate and process information (despite the positive outcomes), then those criticisms likely find themselves in the recruitment process as well.
"Some individuals need more time to process information or others need to write things down to process it," says Dr. Rue. "Some individuals communicate better over email or the phone than face-to-face meetings. Large gatherings and playing music may be somewhat aversive for folks who have issues around loud noises. Either way, it's important to have a theme of acceptance and support in an organizational setting."
As for caregivers, Dr. Rue advises them to do their research on treatments and ultimately trust their gut on what their child needs.
"Rely on data, science and evidence based interventions for individuals with autism that are out there," she says. "But if you don't feel comfortable with what a [doctor] has recommended, then move on to another interventionist. Align with what you know will give your family member the skills they need to achieve their greatest potential."
Anna is grateful she did everything she could to get her daughter the help she needed. As Anna continues to advocate for access to treatments for autism, Ava begins making her own way in the world, confident she has the skills to succeed.
Her advice to employers? Listen and ultimately be fair.
"Be sensitive to things such as accommodations, but at the same time understand I know what my capabilities are," says Ava. "I want to be treated equally."
Read the full piece from Deanna Cuadra on Benefit News here.