Teal W. Benevides, PhD, a professor at Augusta University’s School of Public Health, has published two open-access papers focused on improving health outcomes and promoting the involvement of individuals with intellectual and/or developmental disabilities (IDD) in research and policy decisions.
Benevides co-leads the Individuals with IDD Engaged, Aligned, and Leading initiative (IIDDEAL) alongside Mai Pham, MD, president and CEO of the Institute for Exceptional Care. IIDDEAL is a national project that seeks to enhance health policy and outcomes for people living with IDD by prioritizing input from those with lived experience.
According to Benevides, while discussions about IDD are increasing within healthcare settings, significant challenges remain. People with IDD often face barriers to accessing quality care and experience poorer health outcomes compared to others. Her work stresses the need for ongoing research, policy change, and practices that incorporate the perspectives of individuals with IDD.
One of her recent studies, “Antipsychotic Drug Prescriptions for Transition-Age Youth on the Autism Spectrum,” published in the Journal of Autism and Developmental Disorders, analyzed Medicaid records from 2019. The study found that nearly half of autistic youth with intellectual disability received antipsychotic prescriptions—a rate higher than other groups—and that young adults were more likely than adolescents to be prescribed these medications as they transition into adulthood.
“Autistic people want community support and resources to help support their goals and manage their mental health,” Benevides said. “Sometimes, medications are important in managing mental health, but antipsychotics have not been evaluated in autistic people for long-term use and can unfortunately be used as chemical restraints. Our paper points to a need to better understand how antipsychotics are being prescribed and by whom. We also need clinical trials to understand long- and short-term side effects of these medications.”
In another paper titled “Engagement to Identify Health Priorities of People With Intellectual and/or Developmental Disability,” published in the Occupational Therapy Journal of Research, Benevides worked with colleagues from multiple institutions including Brandeis University, Montefiore Medical Center, Adelphi University, among others. This study involved collaborating over two years with adults with IDD, caregivers, clinicians, and researchers using accessible materials such as videos and graphic illustrations.
The project identified nine illustrated health priorities considered meaningful by participants. These priorities are expected to guide future research efforts as well as inform policy changes and clinical approaches.
“IIDDEAL partners ultimately identified priorities that we all want – regardless of intellectual or developmental disabilities,” Benevides said. “We all want healthcare providers to listen to our goals, understand our personal priorities and support our decision-making about our bodies. We all want to have opportunities for good health. When environments of care, stigmatizing attitudes or lack of resources create barriers, we have an obligation to find strategies to address those barriers.”
Benevides believes her work contributes toward shaping better healthcare practices and guiding more equitable engagement methods for people with autism and IDD.
“I’m very encouraged through the conversations we have had. We have had health insurance payers, policy experts and other decision-makers listening to these priorities,” Benevides said. “I think that there is momentum to make health care better, and I’m excited to continue these partnerships to advance the priorities.”
