Feature Issue on Addiction and IDD

People with intellectual and developmental disabilities (IDD) experience health inequalities compared to the general population, and these inequalities likely leave people with IDD vulnerable to substance use and abuse. Research on substance use disorder (SUD) among people with IDD is limited, and estimates of the prevalence of SUD among people with IDD vary greatly. There are gaps in knowledge about prevention of SUD for people with IDD, best treatment practices, and comorbid mental health conditions commonly seen in individuals with both IDD and SUD. Our team set out to answer these questions and help fill some of these gaps. We have a multi-disciplinary team that consists of researchers and practitioners from the University of North Texas Health Science Center (Fort Worth, Texas), JPS Health Network (Fort Worth, Texas), and UT School of Public Health San Antonio that works alongside healthcare professionals, community members, people with lived experiences of IDD and SUD, and caregivers. Our goal is to conduct research to help ensure people with IDD who experience a substance use disorder receive culturally competent treatment from healthcare professionals adequately trained to work with these comorbid conditions.

What is Known

Research by Sheena Arora and colleagues has shown that people with IDD are less likely to use substances compared to others without a disability; however, they are more vulnerable to substance abuse if they do use them. Additionally, studies by Shawna Carroll Chapman and Li-Tzy Wu , Neomi van Duijvenbode and Joanne VanDerNagel , and Elspeth Slayter have shown that people with IDD are less likely to engage in or comply with treatment if they experience a substance use disorder. While research suggests that treatment for SUD should be individualized for people with IDD, there are no standardized prevention or treatment recommendations, according to studies by Marion Kiewik , Fionnuala Williams , and others. Elspeth Slayter points out in a 2008 study that there is a complete lack of empirical evidence regarding prevention and treatment programs that are effective for the IDD population. There are also a number of barriers that prevent people with IDD and SUD from initiating and engaging in treatment. Some barriers are more unique to this population, such as the lack of treatments specifically for them and the lack of adequate training for providers. Stigma is also a common barrier to seeking and engaging in treatment. People with SUD may be hesitant to seek treatment because of the unwillingness to disclose a substance use problem and the fear of being labeled (e.g., labels like addict, alcoholic, or substance user). Additionally, participating in treatment may be stigmatizing. In essence, as Slayter found in a 2007 study , people with IDD are often reluctant to pursue treatment because of stigma about their SUD as well as their IDD. Treatment approaches for IDD and SUD may conflict with each other, which can create confusion and make treatment difficult.

(Clockwise from top) Tracey Barnett, Melissa Acosta, Dustin DeMoss, Hannah Bednar, Anna Espinoza, Cindy Lopez, Kimberly Fulda, and Scott Walters.

What We are Doing

Our team completed a one-year pilot project to examine SUD treatment for people with IDD in the state of Texas. This pilot project included a review of the literature, interviews with people who worked at SUD treatment facilities, and a review of hospital data. One of the main things we discovered is that national standards for training or practice guidelines specific for SUD and IDD are very limited. As a continuation of our work, we are currently conducting a five-year project with the goal to improve the quality of care and services provided to people with IDD who experience SUD. To accomplish this goal, we are addressing gaps in knowledge, training, and clinical practice guidelines. We will develop interdisciplinary training materials and practice guidelines for healthcare providers that deliver services for people with IDD and/or SUD. We will also distribute the training materials and practice guidelines to stakeholders through in-person and virtual live presentations, enduring materials hosted online, and using professional organizations. Practice guidelines will include an interdisciplinary team-based approach to provide high quality care that incorporates the needs of both the IDD and SUD populations. Stakeholders, including people with IDD and SUD, caregivers, professionals that provide care or services to these populations, and representatives from professional organizations, are involved in all parts of the project.

Currently, we are in Year 2 of the grant. Year 1 and 2 activities include reviewing available training resources and clinical practice guidelines by searching through peer-reviewed literature, conducting internet searches, and surveying facilities. We are also working to identify and interview stakeholders who provide SUD services to further our data collection and recommendations for training modules and practice guidelines. To date, we have conducted interviews with almost 25 organizations that provide SUD services or services specific for IDD throughout the United States. We have also conducted in-depth interviews with 10 SUD treatment providers. Both our pilot project and our current project received funding from the Texas Council for Developmental Disabilities.

Our Preliminary Results

Review of the Literature 2000–2020

Generally, the prevalence of substance use among adults with IDD appears to be lower than adults without IDD. Some research suggests, however, that people with IDD who do use substances are at elevated risk of developing a SUD. Individuals with IDD and SUD are most commonly encountered in outpatient mental health settings. Cannabis, alcohol, and cocaine are the most frequent substances used by people with IDD. Risk factors for SUD among individuals with IDD include being male, having a family history of SUD, being exposed to peers who use substances, having psychiatric comorbidities, and having lower support needs. Estimates of co-occurring psychiatric disorders for those with IDD and SUD range from 42% to 54%. Treatment staff who provide SUD services are not trained to work with clients with IDD.

Interviews with Employees of SUD Treatment Facilities about Providing Services for People with IDD

We conducted 14 interviews and one focus group with three participants, for a total of 17 participants. Analysis of the transcripts generated six overarching themes related to SUD for people with IDD:

• How IDD was identified
• Differences in intake
• How treatment was different
• Barriers to treatment
• Caregivers’ roles
• Training needs

Overall, there are no screening tools for IDD in SUD treatment facilities; intake takes longer; treatment options are limited; barriers to treatment are extensive; including a caregiver may be beneficial or problematic; and we found no SUD training specific to IDD.

Interviews with Employees from SUD Facilities about Current Practice Guidelines and Processes

We analyzed 12 interviews on current practice guidelines and processes. Most programs aim to individualize their approaches to treating this specific population. There is no standardized approach to how they should individualize these cases, however. Many programs expressed that they rarely refer individuals with a co-diagnosis of SUD/IDD outside of their agency and feel inadequately prepared to treat individuals with SUD/IDD co-diagnosis, which further emphasizes the need for accessible standardized guidelines. Overall, many workers expressed a need for improved access to screenings, assessment tools, specific guidelines, knowledge, training, and specialized programs for the variety of specific types of IDD.

Analysis of Data from Hospitals in 16 Counties in Texas in 2019

People with IDD and SUD had more hospital visits than those with a single diagnosis of either IDD or SUD. There were more male patients than female, and most of them were children below age 12 years with IDD-related visits. Nearly 100 percent of IDD-related hospital visits were outpatient visits, suggesting that these patients are likely using hospitals as a primary care or specialty care source due to provider shortages. The total charges filed by hospitals for some of these visits suggest the need for educational resources for the conditions which may be managed in an out-of-hospital setting. More than 80% of the hospital visits related to IDD and SUD in North Texas were reported by hospitals situated in four urban counties. We have noticed significant patient migration from rural counties to urban hospitals for specialized treatments like those for IDD and SUD.

Overall, our team has identified gaps in care for people with IDD who suffer from substance use disorders. One of the biggest gaps is the lack of practice guidelines produced and supported by national organizations. This is also accompanied by the lack of training available for employees who provide care for people with IDD in SUD treatment facilities. Additionally, treatment practices at SUD facilities are not usually geared towards individuals with IDD. For example, people with IDD are generally not included in group sessions or other activities that involve interaction between participants in treatment programs. Another identified gap is the inability to screen for IDD at SUD treatment facilities. Screening for IDD may not occur because the staff are not trained to screen or diagnose IDD, or provide treatment for a disability if one is identified. Professionals at a SUD treatment facility may not know if a person has IDD, is under the influence of a substance, or both. This leaves the provider at a disadvantage for tailoring a treatment plan or even collecting needed information. This slows down the intake process and may even cause delays in initiating treatment. Providers have also described mixed experiences including a caregiver in the treatment for someone with IDD. Including a caregiver may be beneficial to help the person follow recommendations; however, including the caregiver may be detrimental to success if the caregiver negatively influences the person’s use of substances. The development of standardized training and nationally recognized practice guidelines that incorporate each of these themes is a crucial step in closing these gaps. Our team hopes to develop these materials and help close these gaps.