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The Texas Council for Developmental Disabilities has awarded the North Texas Primary Care Practice-Based Research Network at The University of North Texas Health Science Center at Fort Worth a five-year grant up to $750,000 to continue research to improve outcomes for individuals with developmental disabilities and substance use disorder.

The collaborative project, titled “Improving Education and Practice Guidelines for Substance Use Disorder and Developmental Disabilities,” will include faculty and staff from HSC’s Texas College of Osteopathic Medicine and School of Public Health, the John Peter Smith Health Network and community partners.

Dr. Kim Fulda, the executive director of NorTex and TCOM associate professor, will be the principal investigator, while Drs. Tracey Barnett and Scott Walters from SPH are the co-investigators. Dr. Melissa Acosta from JPS will serve as the JPS liaison for the grant. Also assisting on the grant are Dr. Anna Espinoza, assistant director of NorTex, and Cindy Lopez, the senior project coordinator.

“In our previous project, we identified several gaps in caring for people with developmental disabilities who have substance use disorder,” Fulda said. “One of those gaps is the lack of training and practice guidelines that combine substance use disorder treatment or assessment for people with developmental disabilities. This project will fill that gap by providing best practices and recommendations for how to work with this high-risk population. This will be a huge advancement in this field.”

People with developmental disabilities face a number of health inequalities compared with the general population. These inequalities likely leave people with developmental disabilities vulnerable to substance use and abuse.

“It’s increasingly important to study the relationship between developmental disabilities and substance use disorder,” said Walters, Regents Professor in the SPH Department of Health Behavior and Health Systems. “People with developmental disabilities are increasingly likely to live, work and socialize in the larger community. Because of that, they are also more likely to be exposed to negative aspects of the community, including substance use.”

In a prior project that provided the foundation for the work, the HSC team reviewed dozens of studies to better understand risk factors faced by people with developmental disabilities, substances most frequently used, common comorbidities, screening and treatment approaches.

The results from that project showed that alcohol and cannabis were the most frequently used substances by individuals with developmental disabilities.

“We know very little about substance use among people with developmental disabilities,” said Barnett, associate dean for Academic Affairs and chair of the SPH Department of Biostatistics and Epidemiology. “Individuals with developmental disabilities are very unlikely to be represented in survey research of substance use to capture prevalence. This grant continues the work to not only identify the problem but also develop treatment interventions for providers.”

One of the biggest hurdles is the lack of information and knowledge about the topic. The grant and research aim to develop interdisciplinary training materials and practice guidelines for health care providers who deliver services for substance use disorder and for health care providers who deliver care for people with developmental disabilities.

“Very little is known about the connection between developmental disabilities and substance use disorder,” Walters said. “In general, it looks like people with developmental disabilities are less likely to use substances overall, but if they do use substances, they are more likely to have problems.”

Previous research done by Fulda and her team was used by the Texas Council for Developmental Disabilities to establish additional funding for these very little understood and studied societal problems. The goal of the study is to distribute training materials and practice guidelines to stakeholders throughout Texas. They also will develop training modules that can be delivered through live presentations in person or virtually.

Practice guidelines will include a team-based approach to provide high-quality care that incorporates the needs of both the developmental disability and substance use disorder populations.

“We have learned there are no treatment or training guidelines,” Fulda said. “There are so many obstacles to getting the treatment that they need, and the council wanted to put more resources into the program for policy development. Our goal is to help fill some of these gaps by providing training materials and practice materials for providers. It’s very exciting to see our work making a difference.”

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