As we wrap up Alcohol Awareness Month this April, we are taking a deep dive into disability and alcohol use disorder, two crucial topics that are intertwined when it comes to FASD and prenatal alcohol exposure (PAE).  The stigma around disability is compounded by the stigma around alcohol addiction.  People with disabilities, including people with FASD, are underserved by systems of addiction treatment and recovery. 

We spoke with Dr. Rachel Sayko Adams, an alcohol and substance use researcher and an Associate Professor at Boston University’s School of Public Health, about these issues and her latest research on how addiction treatment can better serve individuals with disabilities, including FASD.  Rachel is a key partner in FASD United’s project with the Center for Health Services Research (CHSR), through the Uniformed Services University of the Health Sciences within the U.S. Department of Defense, and is an author of the recent paper Addiction and Disability: What We Know and Need to Know. 

Dr. Adams explains how addiction and alcohol and substance use affects individuals with disabilities, and how stigma and bias create barriers that people with disabilities often face when seeking treatment, and how these treatment services can be designed to better accommodate the unique needs of the disability community, including those with FASD.  Rachel points out that in general, “people with disabilities use less alcohol than those without disabilities” yet those who do find themselves struggling with an addiction may face unique challenges and barriers to support.  “The disability population is too often overlooked in terms of the impact of alcohol and substance use.”   

When it comes to people with intellectual and/or developmental disability (IDD), research shows that “progression to addiction may occur faster in people with disabilities.”  A variety of factors are likely at play, including “co-occurring conditions, such as mental health concerns, that occur more frequently among people with IDD.”  People with IDDs often use alcohol for similar reasons as the general population: to fit in and make social interaction more comfortable.  This can be amplified by having an IDD, as substances may be used with the goal to “seem more “neurotypical” to other people.”  Rachel made sure to point out that, “When we talk about people with disabilities, we have to remember not everyone is the same and everyone is a unique individual.” 

Dr. Adams has a background in public health and in addiction health services research.  She has been researching alcohol for nearly 20 years, with a focus on high risk and overlooked populations, beginning with a fellowship at the National Institute on Alcohol Abuse and Alcoholism (NIAAA).  Starting her career with a focus on alcohol and substance use among military veterans and looking at disabilities related to traumatic brain injury, Rachel has been expanding her studies to the broader disability community and its relationship with addiction and alcohol use.  Rachel’s research also looks specifically at women who have alcohol addictions, affording her the opportunity to identify best practices for reducing alcohol-exposed pregnancies.   

Rachel is working on a new study called INROADS-A: Intersecting Research on Addiction and Disability Services for Alcohol, with Brandeis University and the Boston University School of Public Health, funded by NIAAA to use existing data to learn more about how the disability community is affected by alcohol addiction, including a focus on people with IDD. 

Throughout our conversation, it became clear that addiction treatment and recovery systems need to be better designed to meet the needs of people with IDDs at every level, from alcohol screening to treatment services, to long-term recovery and supports.  At the screening level, “screeners may need to alter questions to be more specific (e.g., asking about wine or beer instead of alcohol) or use common terms (e.g., weed instead of cannabis or marijuana).” 

Stigma and bias are major barriers to treatment of individuals with disabilities.  Among the barriers Dr. Adams identifies are ableist beliefs and stereotypes and a lack of sufficient materials written in plain language.  In addition, “Group treatment which is often used in treatment for addiction, or twelve step self-help groups, while hugely beneficial for many people, are not ideal for everyone with IDD, given the communication and attention needs for fully engaging in these types of meetings.” 

When it comes to individuals with FASD, we need to take great care and sensitivity in how we approach addiction treatment, in particular alcohol treatment, in light of alcohol in the context of prenatal exposure.  This can present challenges when it comes to treating a person with FASD’s alcohol addiction.  Providers can feel uncomfortable acknowledging a person with FASD’s use of alcohol, which can result in legitimate health concerns being ignored.   

Historically, people with FASD have sometimes been referred to using stigmatizing language, such as being “born alcoholic” or “born addicted” which in addition to being highly stigmatizing is not accurate or correct.  FASD United’s Language and Stigma Guide is a great resource for addressing issues like this.  As Rachel puts it, “The bottom line is that anyone can develop an alcohol use disorder.” 

Reflecting more on stigma, Rachel recalls her experience working with the disability community in Boston and how within this tight-knit community, people often did not want others in that community to know that they are struggling with addiction and substance use.  “Sometimes a hierarchy of stigma occurs and there is a lot of stigma around addiction, including within the disability community, which itself is often subject to stigma.”  Pregnant people also face a particular stigma when it comes to addiction treatment and Rachel expressed the need for an approach that balances compassion and empathy with a clear message that “no amount or type of alcohol is safe during pregnancy, at any stage.” 

There is a major need for training among providers on the needs of people with IDDs, given that “Providers don’t feel confident in providing quality care to people with disabilities and have misperceptions and limited knowledge.”  One issue is that treatment providers often are not even aware that certain individuals have a disability.  Rachel clarifies that, “Addiction treatment providers may think the person is being difficult or not compliant and may judge the behavior, rather than providing accommodations.  We need to train providers in meeting people where they’re at.” 

Rachel explains that treatment providers can consider being more patient with individuals with IDDs, for example if someone misses an appointment or is having difficulty communicating.  “This concept of non-compliance is big in substance use treatment and I think people with IDDs can benefit from more options and flexibility, based on their personal preferences.”  Sometimes this may involve allowing a person with IDD to bring in a peer into their treatment that they identify with. 

There remains much work to be done to make treatment services more accommodating to people with IDDs.  “Facilities are not necessarily providing accommodations that people need” Rachel says, adding, “We know that substance use treatment facilities are required to be accessible to people with disabilities, but we don’t have systematic studies on this in practice.”  Rachel points out that addiction treatment is under resourced in general and that people with IDDs in particular have a harder time than average in getting through the door for services. 

Rachel discussed a study she was involved in that revealed that patients going through addiction treatment often do not want to talk about their disability in the context of their treatment.  “It comes down to taking the time to consider how people want to think of themselves and their identity” Rachel explains, adding, “Giving people the agency to feel comfortable with their own decisions and how they identify is crucial for long-term success for people with IDDs, including FASD.” 

Amidst these challenges, research shows that there are solutions that can work.  Positive steps that can be taken include using a “person-first” approach, plain-language materials, repeating information, giving extra time and breaks, and allowing more frequent check ins.  “A lot of treatment occurs in a group setting, and group treatment may not work as well for people with IDDs” Rachel says.  “Moving towards a strengths-based individual therapy approach rather than group therapy may benefit people with IDDs.”  In addition, treatment approaches can be made more flexible, deploying telehealth options and medication assistance, a useful yet frequently unutilized resource for alcohol use disorders.  Physical spaces within treatment centers can also be made more accessible and accommodating. 

Our conversation concluded on a positive note, with Rachel reporting that, “When alcohol and substance use treatment is tailored to the needs of people with IDD and accommodations are made, we can fully expect that people with IDD who experience alcohol or substance challenges can reach recovery.”  In particular, “Peer support has a long history of benefiting people with addiction as well as people with disabilities” and may be uniquely helpful for people with both disabilities and addiction. 

The National Institute on Alcohol Abuse and Alcoholism offers guidance for screening for risky alcohol use.