Feature Issue on Addiction and IDD

This project was made possible by Grant Number 93.959 (CFDA) from the NC Department of Health and Human Services, through funding support from the Substance Abuse and Mental Health Services Administration. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the SAMHSA or NC DHHS.

Lacking established curricula for addiction treatment that is relevant to people with intellectual and/or developmental disabilities, we created one using evidence-based assessments and practices from behavioral health, occupational therapy, and social work, combined with significant input from a group of 15 people with IDD who had personal experiences with substance use disorder in themselves, a family member, or friend.

A cartoon of a person surrounded by faces displaying different emotions. Under the cartoon it says “2. What is addiction?”

A cartoon of two people sitting in armchairs. Between them is a talking bubble with another image, which depicts a red “No” symbol over some people drinking alcohol and acting wildly. Under the cartoon it says “3. Alcohol and your brain and body.”

A cartoon of three people having a picnic on a beach. Under the cartoon it says “9. Self-esteem.”

Some of the topics in the Monarch addiction curriculum.

This group provided substantial insight that informed the development of our curriculum, which includes videos, discussion exercises and activities, and review materials. A section on co-dependent relationships was added to our curriculum based on feedback from the group. Other group members shared their personal stories of what led up to their addictions. Just as in the wider community, mental health issues and a desire to fit in with peers was a common theme.

Mental health therapists with credentials in substance use disorder treatment provided topics related to recovery that everyone who is undergoing addiction recovery needs to understand. Using those lists, we met weekly in the fall of 2022. We presented the topics and asked the group to tell us how to most effectively communicate them.

We discussed using clear language in materials that could be taken home and reviewed. Avoiding abstract concepts or figures of speech was also discussed. The most important feedback, however, may have come when people with disabilities shared their typical experiences with professionals; they told us to presume competence, because they were presuming it in us. Many of their suggestions went far beyond making existing material accessible. They want to be treated by professionals and loved ones with understanding, not fear. They want to talk as much about similarities as they do about their differences. They may need time to get to know you before trusting you.

This led us to a few important tips we wanted to emphasize:

• Respect is critical. Adopt the expectation that the person will have the needed refusal and other skills, such as deep breathing techniques, for success in recovery, once appropriate supports are in place for understanding the treatment.
• Repetition and visuals work. Repeat important concepts and take breaks to allow those concepts to sink in. Pictures are often appreciated.
• Use concrete action steps and discuss specific healthy routines in recovery.
• Therapists must sharpen their listening skills. With patience and time, their own understanding of someone with intellectual or other disabilities will improve.
• Activities are crucial for understanding and reinforcing concepts.

Some concepts that were used came from a 2019 advisory from the Substance Abuse and Mental Health Services Administration (SAMHSA). It offers several suggestions for therapists that are based on clinical experience.

Our occupational therapy work also informed the curriculum, including concepts around minimizing visual and auditory distractions, using shorter and more frequent counseling sessions, and incorporating role play in skills development sessions. We also studied motivational interviewing techniques described by Nita Bhatt and Julie Gentile in a 2021 AIMS Public Health brief . This work suggested that mental health professionals working with people with intellectual disability (ID) and substance use disorder should take a more directive approach than they do with other clients in helping them express feelings about behavior change. They also discussed other work by Evelien Poelen and others showing a correlation between personality and substance use in people with ID. Depending on a person’s negative thinking, impulsivity, and sensation seeking, they may be more prone to severe alcohol or drug use. This work underscores the need for people with IDD to receive appropriate mental health screening and treatment.

We developed the curriculum under a grant from the North Carolina Department of Health and Human Services, through funding support from SAMHSA. The grant specifically called for designing a curriculum to meet a need for a population for whom little direct support for addiction exists.

Our focus group helped choose and approve curriculum topics and reviewed the videos for ease of comprehension. They made multiple suggestions about what individuals, families, therapists, educators and others should know when implementing the curriculum. For example, they recommended that the curriculum start with why people take medications and how that is different from street drugs. We then reviewed the curriculum through our professional occupational therapy and mental health/addiction treatment lenses to ensure that the content, while non-traditional, was accurate in representation.

We adapted portions of the CAGE-AID, The CRAFFT, and the DAST-10, three commonly used screening tools geared to different age groups. The focus was on concrete questions that did not require abstract reasoning.

Using the curriculum

There is a facilitators’ guide to explain how to use the curriculum, but it is not intended to be used as a script. The curriculum has 14 topics that can be used for groups or individuals. While many of the topics can be used in any order, we recommend facilitators begin with Sessions 1 and 2, Each session is designed to be held for no more than 30 minutes and has multiple parts to encourage focused attention. Topics include mixing prescribed medications with alcohol, defining addiction and triggers, effects of SUD on relationships, co-dependency, wellness and recovery, managing emotions, and coping skills. We recommend each session begin with a brief summary of the previous session. Keep it short and simple.

Implementation

This curriculum can be used by parents, teachers, therapists, occupational therapists or others, and may even be useful for teens or younger children. It can be used in small groups or with individuals. We have presented it to mental health providers and some families, and it has been recognized with an industry award for innovation, but it is too soon to report validated outcomes data. Measurements on SUD treatment aren’t strong even in the non-IDD field, so that will be challenging. We are confident, however, that this has given us a better understanding of addiction in people with IDD, and that much of it is rooted in the desire to fit into a community, to be normal and average. This gives us hope that treatment based on principles outlined by people with disabilities themselves, using concrete terms and learning concepts, will stem this tide.