Insurance Resource Center for Autism and Behavioral Health (IRCABH) Celebrates 15 Year Anniversary

Navigating the insurance coverage industry can be challenging anytime: endless phone calls, missed messages, and rarely speaking with the same representative twice, are just a few of the frustrations people may face on a regular basis.  These frustrations can be magnified even more when an individual has received a diagnosis of autism or another behavioral health condition and isn’t able to access the services and supports needed to maximize their potential.

For the past 15 years, the Insurance Resource Center for Autism and Behavioral Health (formerly the Autism Insurance Resource Center) has been working tirelessly on the front lines to break down barriers and help individuals with autism or behavioral health conditions get the services they need to thrive.  The program is located inside the EK Shriver Center at UMass Chan Medical School.

Recently, IRCABH Founder and Director Amy Weinstock, along with Project Director Terri Farrell, sat down to talk with us about the program’s evolution, what they see in its future, and celebrate this milestone achievement.

When asked to describe the IRCABH’s mission in one sentence, they emphasized the importance of “helping communities understand insurance coverage for autism and behavioral health across the lifespan”.  Looking at the breakdown of their success over the years proves they and their staff are doing just that.

Weinstock estimates that the IRCABH has taken approximately 38,000 phone calls from impacted individuals and / or family members since its inception, while Farrell adds that approximately 23,000 people more have been made aware of their work through local presentations, speaking at statewide and national conferences, and other seminars.

Currently run by a staff of 8, Weinstock credits her team with being essential to the IRCABH’s continued success.

“Each team member is highly skilled and experienced and has established strong relationships with agencies around the Commonwealth to help with issues. These connections help us to identify potential trends in coverage, and address common problems that may arise now, or in the future.  Just as important however, everyone on the team is a good listener who make people feel safe, heard, and understood,” Weinstock commented.

Farrell also detailed how an expanded presence and prevalence of autism has played a role in the volume of individuals looking for their assistance.  According to the Centers for Disease Control and Prevention (CDC), approximately 1 in 31 children have a diagnosis of autism.  “Autism is more front and center now, and so more people are aware of it, or know someone who has been diagnosed,” Farrell explained.

The IRCABH provides services at no cost thanks to longstanding, consistent financial support from state agencies, foundations and private donors. “Every hour of assistance translates roughly to between $5,000-$10,000 of treatment.  We appreciate that funders feel the IRCABH is a worthy investment providing real-life help,” Weinstock elaborated.

Weinstock also pointed out how legislation has provided much broader availability to coverage as well as to the number of people who can access it, especially since Medicaid must now also cover treatments, not just private insurance.  Legislation regarding the issue of autism coverage in Massachusetts is very familiar territory for Weinstock.  She spearheaded the landmark 2010 ARICA law, requiring Massachusetts insurance companies to pay for autism treatment, an idea which developed during her yearlong enrollment as a Fellow in the Shriver Center’s LEND Leadership Program.

When asked what factors enable the IRCABH to stand out, Weinstock and Farrell pointed to three main highlights: 

• Responding to requests for assistance that combine a quick, professional understanding with passion and lived experience
• Adapting to current problems as well as unknown future challenges by using resourcefulness to break down barriers
• Functioning as a team to navigate insurance-related issues for autism and behavioral health – that team focused approach is not commonly done

Helping people navigate insurance issues can also lead to very meaningful, rewarding moments along the way, as Farrell described.

“Being able to solve a problem or fix an issue that allows a child or adult to access care they desperately need is a wonderful feeling, especially when it will greatly improve someone’s quality of life.  Along with that, I really enjoy meeting so many families from different communities, cultures, and parts of the state and understanding their unique issues and challenges.  Both aspects truly make it all worth it, “Farrell said,

When asked about the IRCABH’s evolution over its next 15 years, Weinstock mentioned that she aims to “continue to grow and be flexible to meet the needs of our communities and support those families for years to come.”  Additionally, she is hopeful its design could be successfully replicated in other states to help people beyond Massachusetts.