Home » 2019 Open Enrollment » Health Care News » Web tool will help families navigate complex world of autism-services insurance

Web tool will help families navigate complex world of autism-services insurance

New Jersey law requires health insurers to cover specialized therapy for individuals with autism known as applied behavior analysis, or ABA. For the past year, a stakeholder work group has been meeting to address the obstacles faced by families seeking ABA coverage, and to bring the benefits of the mandate to more families that need them.


The work group includes the advocacy group Autism New Jersey, representatives of the state’s five health insurance firms and professionals who provide ABA, which seeks to change the disruptive behaviors associated with autism.

A major project of the group has been designing an online tool to guide families and therapists when they need to contact their insurer, get information about coverage, file claims and get paid for autism services.

Ward Sanders, president of the New Jersey Association of Health Plans and a member of the stakeholders group, said the Web tool is nearly finished and should go live later this fall.

The group is hopeful that the Web tool will provide a “one-stop shop for parents and providers looking to get right to the autism benefit information for the five insurance carriers,” said Suzanne Buchanan, executive director of Autism New Jersey, which will post the tool on its website, www.autismnj.org. “This will be a grid showing all the different types of information about autism coverage across the different carriers.”

The stakeholders group has evolved into an effective place to raise problems that families and providers have encountered in getting insurance coverage for autism, Buchanan said. “Everyone who comes to the table seems to have a genuine concern for individuals with autism and their families.”

And by increasing the transparency of information from insurance carriers, the website should help. Because even though the autism mandate has been law in New Jersey since 2009, “One of the main problems has been educating parents that this benefit even exists,” she said. She said Autism New Jersey will continue to help families who call its help line, (800) 4-AUTISM.

It’s not surprising there’s so much confusion about autism insurance coverage.

For one thing, only about 30 percent of New Jerseyans are in fact covered by the autism mandate. That’s because it only applies to fully insured health plans; it does not apply to self-insured health plans, which cover more than half of New Jerseyans.

State workers are covered by the mandate under the state health benefits plan, but the autism mandate does not cover Medicaid members.

Autism New Jersey estimates that about 27,000 New Jerseyans ages 3 to 21 have a diagnosis on the autism spectrum, and that the autism mandate covers roughly a third of that population.

Sanders said the goal of the website will be to help families and health care providers navigate health insurance websites that are loaded with information.

“This will be an Excel spreadsheet that will help you find information you need, so you are not searching all over and ending up opening a lot of wrong doors,” he said. “We want to direct folks to the resources that will best help them solve challenges and answer questions.”

Sanders said the work group meetings have been productive.

“Part of that is people developing a trust around each other. It provides a forum to say, ‘Hey, here is a systemic issue, and how do we go about solving it?’”

Scott Leshin found out how difficult it can be to navigate the insurance world when his 8-year-old son Samuel was born with developmental disabilities after suffering a stroke in the womb. Leshin learned “how to make sure that my son got what he needed and we didn’t go bankrupt.”

He eventually left his career in the financial service industry and now works full time as a consultant, intervening on behalf of families seeking to have insurers reimburse them for the care of their special needs children. Leshin’s Livingston company, SJ Personal Healthcare Advocates, works on contingency, receiving 20 percent of the reimbursement he wins for the family.

Leshin said the New Jersey autism insurance mandate “is awesome; it is tremendous — I have not seen any state that has anything better.” But he said the state is not adequately enforcing the law. “We need to hold insurers’ feet to the fire: The mandate is not being policed properly.”

Families also face issues when they work with an ABA therapist who does not belong to their insurance company network — and it is common for therapists to be out of network because of what they see as inadequate insurance reimbursements. In those cases, the insurer may negotiate the payment to the out-of-network provider, but the family may have to pick up a larger share.

Craig Domanski is an ABA provider and clinical director of the Data Group of Westfield, as well as a member of the stakeholder group. Domanski said many of his colleagues refuse to go through the hassle of working with insurance companies. “I spend one full day a week on the phone with insurers,” he said.

He is hoping the new Web tool will help eliminate some of the avoidable red tape. “We really need hundreds of more providers” of ABA in New Jersey, he said. “I get 10 phone calls a week from families” looking for help.

He said one of the real benefits of the autism mandate is that it can enable the family to get ABA services in the home, in addition to the schools, where they traditionally have been provided. “The insurance mandate is supposed to give families the tools they need.”

Domanski said autism is not a school problem: “It is a lifelong disability that impacts all facets of life,” and providing ABA in the home “is where we see the biggest bang for our buck, working with parents, grandparents, cousins and siblings in the natural environment, in real life situations, and teaching the family how to bring individuals with autism out into the community.”