Feature Issue on Addiction and IDD

Clear-language summary

We are not sure about which kind of treatment works best for people with IDD who want to stop using alcohol or drugs. That is because they have been left out of the research studies on best practices in treating addictions. Research does show some barriers that people with IDD have in receiving counseling. Some have a hard time talking about the way they feel. Some have a hard time understanding certain ideas, and they often need extra time to think about problems they have been having.

Cognitive behavioral talk therapy works with some people who have IDDs. One approach focuses on teaching people skills that they can use when being offered alcohol or drugs. Using roleplay, video, or virtual reality has also been used to teach people with IDD to say “No” to alcohol or drugs if that is what they want to do. Learning these refusal skills helped people with IDD become more independent and self-determined.

A 2017 study looked at how well a five-week treatment program reduced binge drinking in adults with IDD. This approach used a strict model that included motivational interviewing and modified cognitive behavioral therapy methods. The intent was to increase willingness to change. The approach included having a support person in all of the treatment sessions.

These two treatment approaches provide some guidance in supporting people with IDD who have challenges with addiction. They promote the inclusion of people with IDD in addiction treatment programs.

People with intellectual and developmental disabilities (IDD) facing addiction confront the same consequences as everyone else, yet treatment systems often struggle to know how to best serve this community. This is especially troubling, as the evidence suggests that the consequences of substance use in this community are greater due to high levels of psychiatric comorbidities (matched with use of prescribed psychotropic medication) and greater challenges accessing appropriate treatment due to ableism and the lack of an evidence-base for treatment. Historical research, as found in a 2017 study by Christos Kouimtsidis and colleagues, often supported the idea that people with IDD were a community to be excluded from traditional psychotherapy due to cognitive differences that impair the ability to learn new information or to generalize that learning. Difficulties identified in the literature relate to the articulation of emotional states, challenges mastering abstract concepts, managing expressive or receptive speech difficulties, and potential delays in processing or retrieving information, according to research done by William Lindsay and colleagues and Marita McCabe and colleagues . Caroline Everington and Solomon M. Fulero note that this community may be more suggestible and display acquiescence bias, for example by changing answers to questions in response to negative feedback. Further, Angela Hassiotis and colleagues identify that people with IDD may also try to mask their challenges in comprehending and following verbal communication by using set phrases that they know are appropriate to the context.

Given this research, and the lack of evidence-informed treatments for addiction treatment clinicians to draw on, providers are often at a loss for how to work with this community in their settings, which are often based on cognitive behavioral talk therapy techniques. Clinician-researchers, such as Kiran Azam, Marc Serfaty, Michael King, and colleagues, have begun to assess the applicability of cognitive behavioral therapy (CBT) to people with IDD in general mental health treatment settings. Meg McQueen and colleagues note that heterogeneity in the IDD community is a challenge to using the standard, manualized interventions on which most clinicians are trained. There is some forward movement in the clinical literature around modifying the use of CBT for this community, however. In 2022, my colleagues Marc Copersino, R. Kathryn McHugh, Scott Lukas, and Roger Weiss and I found that despite little research on this topic, the elements of CBT that focus on knowledge and skill attainment “in the here and now” can provide developmentally appropriate instructional techniques. My coauthors and I draw on studies by Shanna Burke , Joseph Lalli, and others of experiential training approaches, such as role-play using video or virtual reality techniques, that are often used to support this community’s capacity to practice assertiveness, build social competency, and foster self-efficacy. These instructional techniques can reinforce target behaviors in people with IDD when social adaptive functioning deficits correlate with increased risk of addiction problems. Building on this foundation, two small empirical studies, including my own, have explored implementation of addiction treatment for this community.

First, my colleagues and I researched the clinical utility of a refusal skills intervention designed to be cognitively accessible to adults with IDD. This two-week program included 10 sessions of 45 minutes each. The focus of the clinical work was on building confidence, developing assertiveness, and demonstrating measurable skills around refusing alcohol and other drugs (AOD). The adaptive skill set provides individuals with refusal skills, or well-rehearsed and assertive responses to people who pressure them to use, hold, or obtain alcohol and other drugs. These skills are noted in a number of addiction prevention studies focused on this population and promote the disability policy and practice goals of independence, self-determination, community inclusion, and most importantly, dignity of risk. Refusal strategies draw on assertiveness training and coping strategies. People are exposed to scenarios in which they are offered AOD, and then they learn different responses, such as “NO-GO” and “NO-Suggest-GO,” which includes making an alternative suggestion. These refusal skills scripts were adapted from The James Stanfield Company’s Life Facts Series, Substance Abuse and Smart Trust volumes, and the National Institute on Drug Abuse (NIDA) Therapy Manual 1: A Cognitive-Behavioral Approach to Treating Addiction. We found that the use of refusal skills provides autonomy for the person with IDD. We also found that these skills, particularly when provided on a voluntary basis, increase the acceptability of treatment to them and their support network because they align with the values of individualized approaches and self-determination.

The approach provides specific clinical tools for people who may be feeling ambivalent about either AOD use or addiction recovery when in high-risk situations in the community.

The curriculum was drawn from general education material about AOD designed for adolescents by James Stanfield and Neal Cowardin in 2008, as well as motivational strategies for addiction recovery, assertiveness training, and coping strategies for stressful social interactions. For example, individuals with IDD can learn to identify images of AOD. They can learn to notice what a person’s body language, gaze, and tone of voice may be communicating. Other work focuses on ‘checking ahead’ to recognize as well as avoid risk in new situations, including, potentially, asking who will be at a party before attending, with a cue to remember to use refusal skills, if desired. My coauthors and I found these methods to have a strong, statistically significant effect for skill acquisition at post-test. While only 17-27% of the group could suggest an alternative activity when a trusted person offered AOD, 67-90% were still able to assert refusal. Additionally, we found that 60-73% of the group were able to end an interaction in which a trusted person continued to give pressure regarding AOD use.

The second study is a formal clinical trial, conducted in 2017 by Christos Kouimtsidis and colleagues, that targeted ‘hazardous’ binge drinking in adults with IDD, which was found to reduce hazardous drinking. Consisting of five weekly sessions of 30 minutes each, treatment was augmented with a sixth ‘booster’ session in week eight for one hour. Clinician researchers drew on the use of existing manualized treatments, during which they follow specific instructions in a specific order to retain treatment fidelity to the model. These treatments included motivational interviewing and modified CBT approaches tested against treatment as usual model. The intervention began by focusing on developing therapeutic rapport, explaining the intervention, discussing the role of the client’s support person (who attended all sessions with them) and other logistics. Next, they focused on enhancing motivation using techniques adapted from the Motivational Enhancement Therapy (MET) approach published in the UKATT MET Manual . MET is rooted in the transtheoretical model of behavior change , which was first developed by James Prochaska and Carlo DiClemente in 1992. Themes explored in the 2017 study related to current lifestyle choices linked to personalized advice about alcohol, using motivational strategies to manage resistance, and shifting the focus of discussion and rolling with resistance versus confrontation. Moving forward, treatment focused on more motivation enhancement, bolstering willingness to change, defining treatment goals, and exploring relationships between intentions and behavior, as well as exploring and resolving ambivalence about drinking. Promoting freedom of choice and dignity of risk were also addressed as skill development activities continued. The focus of the booster session was on recognizing any behavioral changes for discussion and celebration with a review of current and past coping strategies to be used in the future as part of a coping plan.

These two existing empirical treatment intervention studies provide emerging guidance to clinicians working with communities with IDD facing addiction challenges. It is important to reflect on the fact that the emerging knowledge on treatment for this population builds on existing approaches designed for people without IDD. It will be important to replicate and further build on these approaches in order to determine whether they are consistently effective, or whether we need to start from the ground up by thinking about the various strengths of people with IDD and incorporating the tenets of person-centered planning. One vital missing ingredient is the inclusion of people with IDD and addiction challenges in the development of treatments, the design of evaluation studies, and in the post-mortem considerations on the experience of treatment and interpretation of evaluation data. As the field moves towards a richer understanding of how standard therapeutic approaches can be modified to successfully meet the needs of this community—while honoring dignity of risk—there appears now a surge in interest in addiction treatment for people with IDD. This may be an indicator that the field’s longstanding goal of promoting community inclusion in all aspects of life is coming to fruition. It may also relate to the rise in calls for considering external validity in addiction treatment research, and to the expansion of clinical research about mental health treatment in IDD into the addiction realm. I hope to see clinician-researchers continue to build on this long-needed forward momentum in addiction treatment research that respects, honors, and supports our community members with IDD.