Interview conducted by Mary Jane Weiss, PhD, BCBA-D

Mary Jane: In this interview, Rita Gardner highlights the non-profit organization Melmark’s expansion into the Carolinas, an area of the country where many students with disabilities often experience ineffective education, and where there is an urgent need to provide quality services to individuals with autism. Rita also highlights the need to address systemic inequities in access to and treatment within educational settings. She envisions a service delivery world where providers work toward equitable access for all individuals, regardless of geographic location or individual characteristics. Her work in the Carolinas proves that such access can be given and that such systemic inequities can be reduced. Melmark’s vision serves as both an inspiration and a roadmap to enacting the necessary changes in ensuring universal access to and care for individuals with autism.

Mary Jane: Melmark has expanded to North Carolina. Can you tell us why Melmark expanded there?

Rita: In 2017, as part of our strategic planning process, Melmark looked to expand capacity within our special education services. We had significant waitlists in our schools and knew we had the ability to provide more services. It was often painful for our admissions teams to tell families in crisis we had no openings. During the strategic planning discussions with our board members and leadership teams, there were specific requests from our board chair, Larry Cancro, to explore an area of the country where services were not implemented in accordance with the federal law. Larry, knowing what a Melmark education did for his daughter Lisa-and their family, -decided to work with the Board towards a shared vision that other families could obtain access to the same quality of services. He often heard from families from all over the country about the inability to get special education services that met their child’s needs. We knew we could replicate our model of quality service in our current states but wanted to see if the quality educational services could be replicated elsewhere, where resources were scarce for high quality special education. This vision was consistent with Melmark’s original mission since its founding in 1966. Melmark was founded on the idea that Melissa Krentel would be more fully included in her community. Since the passing of IDEA, we continue to see states who have not fully implemented the mandates embedded in the federal law. So, our leadership teams started to research where else we could develop new programs in addition to the capacity expansion in Philadelphia and a second school in Massachusetts.

Mary Jane: I can certainly appreciate how Melmark’s interest in expansion is indeed a reflection of the organization’s mission and core values. How did this initial expansion take shape?

Rita: A few days after the Board approval of those state expansions, including potential expansion to a new state, two former staff, Dr. Bradley Stevenson and Dr. Keri Bethune contacted Melmark New England regarding the potential to get support to open a school in North Carolina. They had both seen many things that concerned them during their graduate training. They felt that North Carolina did not have the full continuum of services, and students were often inadequately educated and sometimes excluded from education.

Both professionals had trained at Melmark New England and received their BCBA and Master’s training through our organization and had finished their doctoral training programs at UNC Charlotte. The timing of their reaching out was impeccable; we found that the North Carolina Department of Public Instruction has a Non-Public Schools’ Exceptional Children Program approval process for a private school to provide services for publicly funded students, but it was not utilized frequently or to serve autism with adequate and comprehensively. North Carolina’s constitution defines education as a fundamental right. In addition to that, federal Individuals with Disabilities Education Act (IDEA) ensures “a free appropriate public education to eligible children with disabilities,” (FAPE), but we heard from so many families who did not feel their child was receiving FAPE. Many were excluded from school; some were expelled, others were on partial days and/or homebound instruction. So, after significant stakeholder support from public schools, advocates, and families, we got started on the development.

In addition to a general problem with providing appropriate services to students with special needs and excluding these children from education, North Carolina had a problem with systemic inequity; students of color were disproportionately disciplined which was called out by the local media.

“In 2023, more than two dozen school districts in North Carolina were on a state warning list for “Significant Disproportionality,” specifically for out-of-school suspensions totaling more than 10 days for Black students during the 2021-22 school year. Schools on the warning list receive technical assistance and monitoring activities from the state. Districts that fail to meet the state’s disciplinary targets can eventually be required to set aside a mandatory amount of federal IDEA grant money “to intervene in the area determined disproportionate.” (Nate Morabito, WCNC Charlotte investigation, September 6, 2023)

Mary Jane: What impact did providing autism services in North Carolina have on the local community? How did it change the landscape of autism service options for families?

The Carolinas division of Melmark was opened in 2018 because of the extensive research by leaders at Melmark focused on areas in the U.S. with the greatest need for Melmark’s clinically sophisticated services. Research showed that some children in the Carolinas were not receiving (FAPE) and desperately needed high-quality evidence-based services. Through our service division based in Charlotte, North Carolina, we have expanded Melmark’s already proven model of program development and clinical treatment to make a positive impact on students in this part of the country. We developed a new building that opened in September of 2023. It is a 31,000 square foot, one-story structure designed to meet the student population’s accessibility needs and ADA requirements. The new building provides grade-level access to classrooms and other resources in 14 classrooms, clinical support spaces, offices, and fully accessible restrooms. A spacious lunchroom provides more meaningful social interaction opportunities for students and offers a larger space for professional development and training as Melmark continues to emphasize a highly skilled workforce. We are now serving over 40 students, 50% from North Carolina, 50% from South Carolina. In South Carolina, we are collaborating with the Department of Health and Human Services on what the system of care could look like for individuals with complex developmental needs across the lifespan. We will look to continue to develop that continuum of care, so that all children and young adults have access to the services they need.

Mary Jane: There are so many challenges facing human services organizations today. As a provider across multiple states, are those challenges determined or influenced by geographic region? For example, what novel challenges existed in North Carolina?

Rita: One challenge is that while IDEA is a federal law its implementation of the full continuum is inconsistent across the United States. Because IDEA can require individual education plan (IEP) cases to be proven more restrictive it can take case law precedent to develop the service system in each state to meet individuals’ needs. Many families do not have the financial resources to hire an attorney to bring those IEP cases to the state administrative appeal system. Those systems are complex and can take years to navigate. Often those cases are filed by a lack of school funding. IDEA has never been fully funded by the federal government and states differ greatly in resource allocation to support these students. We frequently hear that there are significant financial barriers to making the right decision to provide the intensive resources and/or placement an individual needs with profound disabilities. It should never be that a child does not receive FAPE because of financial resources. We are currently collaborating on North Carolina legislation “Support Students with Disabilities Act” to provide funding for these more complex children, no matter their location on the continuum, this was recently refiled as H1035.

I am sharing a graphic to help readers understand the continuum of care options and to view it in the context of restrictiveness. For more information visit this page.
(Iris Center, Vanderbilt University)

Mary Jane: What insight do you have about access to equitable care for individuals with autism? How can we understand and improve inequities in care? How should the field be examining issues of equity in 2024?

Rita: As a Behavioral Science public health professional and a Behavior Analyst, I think it is critical to examine the data, and we often do not have the demographic data, so practitioners need to advocate for states to gather it. In the case of North Carolina, as noted above, we do have data that show systemic issues related to exclusion from education. In September of 2023 Nate Morabito, WCNC Charlotte investigative reporter, shared:

“North Carolina Department of Public Instruction records show more than 2,600 students in all received out-of-school suspensions or expulsions greater than 10 days that school year, while nearly 19,000 received 10 days or less. Both numbers were lower than the previous school year, but also included remote learning. Most of the students punished at length were Black, DPI data show.” The data clearly reveal that exclusion from education is happening at an alarming level, and students of color are more likely to experience school exclusion.

We need to examine the inequities in access, equity, and inclusion, understand the structural barriers to care, and work to remove them to ensure families can navigate the system of care. We know education can elevate individuals’ lives and help them have the best outcomes possible while also enabling them to contribute to their community. I don’t think that is too much to ask for all children, including those who require complex support.

Mary Jane: Do you have suggestions for behavior analysts who are moved by these issues and would like to be part of the solution? How can individuals learn more about this problem? Are there things you can suggest that we can do on local levels within our own settings and geographic locations?

Rita: I would suggest that behavior analysts explore the data that are available within their states and regions- about differential access, differential outcomes, differential quality of care, and differential disciplinary decisions in schools. Processes and outcomes differ, unfairly, based on demographic variables. We need to understand those data, and we need to change those data, and we can. We must identify the barriers to access before we can remove them. I would urge everyone to view services through a wider lens. We need to consider ways in which we can truly expand access, reduce inequity, and create a more inclusive autism service delivery system.

Importantly, for behavior analysts to help address critical public policy issues, there are several things they can do to be part of the solution:

  1. First and foremost, listen to the community and learn from them.
  2. Second, to be someone who can inform public policy, you need to establish expertise in the field, to build professional credibility for future advocacy activities.
  3. Once you have established professional credibility, it’s important to develop relationships with governmental and legislative stakeholders. I believe behavior analysts are particularly trained for this, as they understand research, data, and the outcomes of interventions. This is critical to quickly build a case for a public policy with any stakeholder; the more knowledgeable you are, the more your ability to present cogent arguments will quickly be recognized. Make sure you are passionate about the issue you want to advocate for, as many legislators and/or stakeholders can assess folks’ commitments to projects quickly.
  4. Relationships need to go both ways. Work on providing support to stakeholders when they reach out to you (for example, help them with their constituent needs), so that when you do need something, you’ve already established a relationship. That relationship provides a way for you to raise your concern in the queue of the many issues stakeholders have in front of them.
  5. Beyond knowing the data and research, the behavior analyst must be able to tell a compelling story about how it impacts the community (or bring an individual or family who can tell a compelling story). The stakeholders responsible for the policy you want changed need to understand both potential positive outcomes of policies if they are adopted, and repercussions if things don’t change. The behavior analyst must demonstrate a commitment to working with the stakeholder to achieve desired outcomes; then, they may be willing to use their political capital on your issue.
  6. And finally, this is often a long process. Behavior analysts need to understand that it can take years of advocacy before something changes. (Consider it a behavioral shaping process, with very delayed reinforcement). The good news is that public policy can impact hundreds, if not thousands, of individuals with positive change. As my parents passed onto me ” If we want our community to be something we value and can leave behind a better place, it is really up to us to participate in the processes that make that happen”. That is something that is highly motivating and worth the discretionary effort!

Mary Jane: Rita, thank you for this bold example of how we can change the world. Indeed, service inequities are a horrific reality, but much can be done to commit our organizational and individual resources to ensure access in underserved communities. Thank you for serving as a model in this context, as well as others. We are all inspired by your example and emboldened by your courage. This story serves as a beacon of hope for families, and as a model of how we as professionals can work to address inequity, strive to increase access to care, and advance inclusivity goals within our work.

Citation for this article:

Gardner, R., & Weiss, M. J. (2024). Expanding equitable access to services for individuals with autism: An interview with Rita Gardner. Science in Autism Treatment, 21(9).

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