Feature Issue on Addiction and IDD
Addiction and Disability
What We Know and Need to Know
Research shows that people with disabilities use less alcohol and drugs than those without disabilities, but they may begin having problems faster because of their usage. We don’t know if addiction is more common among people with intellectual and/or developmental disabilities, than people without IDDs. Having an addiction means you feel like you need to use alcohol and drugs, and then use too much. Addictions cause problems in people’s lives because of using alcohol and drugs.
People with IDDs use drugs and alcohol to make it easier to be around other people, to relieve stress, or because they don’t want other people to notice their disabilities. People with IDDs who don’t use alcohol or drugs may not have as many chances if they don’t have a lot of friends, or if they live in a group home where there are rules that say they are not allowed to drink. It may be for some other reason.
When most people are having trouble in their lives because of addiction, they have the choice to go to treatment and get help. This is not always easy for people with IDDs. None of the methods to find out if a person is truly addicted are designed with people with IDDs in mind. There is a belief that they are not “adult enough” to use alcohol or drugs, or that it is not so bad if they are using them a lot. The questions may be hard to understand and use unfamiliar words. There need to be better ways to assess when people with IDDs need treatment.
Most treatment programs are also not well-suited for people with IDDs, and most people leave before completing treatment. The programs require strong cognitive and communication skills, and the leaders have little experience in supporting people with IDD. Just like everyone else who has an addiction, many people with IDDs are not ready to stop using alcohol or drugs. Treatment must follow a “person-first” approach that considers their strengths, learning styles, and accommodation needs.
Brandeis University and the Boston University School of Public Health have been funded to learn more about how the disability community is affected by alcohol addiction, including a focus on people with IDD. The study is called INROADS-A: Intersecting Research on Addiction and Disability Services for Alcohol.
Alcohol and drug use is quite common in the United States, yet substance use has health risks and other potential consequences, including death. Opioid overdose is often highlighted in the media, with 81,083 opioid-related deaths in 2023, according to the Centers for Disease Control and Prevention . Yet more than twice that number, 178,000 people, die annually from chronic or acute alcohol use, according to the CDC’s most recent data. In 2022, 48.7 million people aged 12 or older (17.3%) had a substance use disorder, according to the National Survey on Drug Use and Health , conducted by the Substance Abuse and Mental Health Services Administration (SAMHSA), a U.S. Health and Human Services agency. About 11% of the U.S. population aged 12 and older has an alcohol use disorder (or addiction to alcohol) and 10% has a drug addiction, SAMHSA data show. People may be addicted to only alcohol or one drug, alcohol and drugs, or multiple drugs.
Addiction is characterized by behaviors that include compulsive alcohol or drug use and continued use despite related consequences or harm. People may be physically dependent on medications (e.g., pain medications) but are not considered to have an addiction unless they show adverse behaviors or experience negative consequences (e.g., problems with family members) related to the use of that medication.
Addiction is a risk for anyone and is influenced by family history, brain response to substance use, and learned behaviors. Research shows that usage among people with intellectual and/or developmental disability (IDD) is less frequent than it is among people without IDD. Addiction rates are higher across most disabilities than among those without disabilities, however, and addiction may occur faster in people with disabilities who use the same amount of substances as people without disabilities. Our team summarized findings from these and other researchers, as well as our own work, and we provide a detailed overview of what is known through the Oxford Research Encyclopedia of Global Public Health .
There are gaps in what we know about the rates of addiction among people with IDD. Estimates of addiction prevalence vary greatly depending on how IDD is defined, and what group of people are being examined, such as those already in addiction treatment. It remains unclear if addiction among people with IDD occurs more or less frequently than for people without IDD, as research has reported both outcomes. The higher estimates may relate to co-occurring conditions, such as mental health concerns, that occur more frequently among people with IDD. Some people use alcohol and drugs as a social activity with friends. It may relieve stress for others, or help with symptoms of depression, anxiety or pain. There is some association with social determinants of health such as poverty, inadequate housing, and poor access to health care, which are more common among people with disabilities. That said, alcohol and drugs are used less often by people with IDD for several reasons. They may have fewer opportunities to use substances if their social contacts are more limited or if they do not live independently, or if they are less integrated into the community. Some people with IDD interpret rules quite literally so they may not drink or use drugs if told not to, and others may be less interested in risky behaviors.
We have some understanding about why people with intellectual disability or autism use alcohol or drugs. Some people with IDD may use alcohol or drugs to reduce social anxiety or to seem more “neurotypical” to other people. Substance use is more likely to occur when there are co-occurring psychological conditions (e.g., depression or anxiety), pain, history of trauma, or behavioral problems. For people with autism, substance use may also become problematic if it becomes associated with pleasure that is not typically experienced, or if alcohol or drug use becomes a hyper-focused behavior that is repetitive and provides comfort. Prevention efforts (i.e., education about the risks of alcohol and drug use, or practice with refusal skills) may be essential. Prevention is most effective before alcohol and drug use—including nicotine—begins. Research is needed to understand what types of prevention may work best, given the specific characteristics of subgroups of people with different types of IDD.
Risky substance use and addiction may lead to liver disease or hepatitis infection, psychological problems, driving while under the influence, difficulties at work or school, and interference with relationships with family, friends, and others. It is important to screen people for risky alcohol and drug use and to facilitate access to early substance use treatment for those who begin to misuse substances.
Self-reporting of alcohol and drug use and related problems, along with reports from family or caregivers, is reliable, although under-reporting is a concern. Screening tools have not been validated for people with IDD, however. Generally, some people with IDD may respond yes if they do not understand the question, so follow-up questions may be needed. Similarly, 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). The National Institute on Alcohol Abuse and Alcoholism offers guidance for screening for risky alcohol use, and the National Institute on Drug Abuse does the same for drug misuse.
Stigma around disability and addiction has led to stereotypes that interfere with screening or treatment for alcohol or drug problems. For instance, an ableist belief that people with IDD are not “adult enough” to use alcohol or drugs, or cannot access alcohol or drugs, may lead health care or other providers to assume that they do not use substances. Others believe that people with IDD deserve pity, so their substance use is “OK.” These stereotypes are compounded by the stigma around addiction, which means fewer people may disclose problems or seek help. The need for accommodations—such as materials that are easy to understand or help from a family member or an aide—is not always considered and can become another barrier to assessment for alcohol or drug problems and to seeking care. (Editor’s note: A new screening tool adapted for people with IDD is discussed in the article Tips for More Accessible Treatment).
Treatment can occur in many settings. Many people receive outpatient care, such as individual or group therapy. Medications are commonly used to treat opioid addiction (i.e., methadone, buprenorphine, or naltrexone) and are available, but those used for alcohol addiction, such as disulfiram, naltrexone, or acamprosate, are less commonly used. Some people with greater treatment needs may need intensive day treatment, residential or inpatient care, or a safe place with medical care if they experience withdrawal symptoms (i.e., detoxification).
Informal supports are also available, such as self-help (e.g., Alcoholics Anonymous (AA) or online support groups. There is some concern that in-person AA or other self-help groups may not be ideal for everyone with IDD, given the cognitive and communication skills and longer attention span needed to engage in and benefit from these meetings. Increasingly, “peers,” or people with their own experience of addiction, are part of treatment efforts. Peers—sometimes called peer counselors or recovery coaches—can help a person with addiction navigate treatment options, provide social support, and help with other needs such as housing support. Peer supports are generally flexible and personalized.
Despite these treatment options, barriers exist for people with IDD. They are less likely to receive or remain in treatment for alcohol or drug problems, research shows. Generally, many people who live with addiction are not ready to stop using alcohol or drugs. This may be related to family or friends who also drink or use drugs, or that alcohol or drug use are sometimes seen as beneficial for reasons. Some people are not aware of treatment options, may not have treatment nearby, or are concerned about costs. For people with disabilities, including IDD, concerns about costs or transportation may be even more important.
Other barriers relate to stigma and discrimination due to disability, including IDD. Addiction treatment options may be inflexible. For example, treatment may require participation in a group for a specific amount of time, doing homework before the next session, or recalling information from the prior session, which may be more difficult for people with cognitive challenges unless there are accommodations that support their learning styles. Materials may not be written in plain language that can be understood by a wide range of people.
Examples of stigma related to disability include the belief that people with IDD will make other people uncomfortable or that they do not belong due to different learning styles or social norms. In some addiction treatment settings, medications or personal care assistants may not be allowed, limiting the likelihood of people with those needs being able to attend. Evidence suggests that health care providers have misperceptions, limited knowledge, and limited confidence about working with people with disabilities. Providers may not trust that people with IDD know enough about their own needs.
Successful addiction treatment is possible and is more likely to occur for people with disabilities if accommodations are made. A “person-first” approach expects the treatment provider to work with the person with IDD to understand their specific strengths and limitations, learning styles, and other needs for accommodations. Work has been done to consider what is needed for people with cognitive challenges, including those with IDD. Examples include:
- Plain-language materials and communication, to address concrete thinking or difficulty with complex information. Shorter, direct sentences, use of pictures and graphics, and slang language, such as “weed” instead of cannabis.
- Reduced quantity of information at any time, to address potential cognitive overload. Allowing time for concepts to sink in, minimizing distractions, and taking breaks.
- Checking in with the person to determine if information should be repeated or practiced. Tools to help with this can include having the person summarize what they heard, role play, written summaries, and structured homework or routines.
- Building problem-solving skills, to increase insight about why they do or do not want to use alcohol and drugs and build skills to stop. This might include practice on how to say no if someone offers alcohol or drugs, talking about cravings or impulses to use, and finding alternatives to alcohol and drug use.
- Using strengths-based individual therapy rather than group therapy, to allow for a focus on the person’s unique strengths and needs to support their change in substance use.
Many people recover from alcohol and drug use problems. One definition of recovery highlights the ability to live a life that is meaningful to that person, be in a safe environment, take care of their health, and contribute to society according to their abilities. If substance use treatment is tailored to the needs of people with IDD, inclusive of accommodations if needed, there is every reason to expect that people with IDD who have problems with alcohol or drugs can also reach recovery.
Our knowledge base is limited around alcohol and drug use, risky substance use, and addiction among people with disabilities, including IDD. Some research is dated or comes from very small groups of people, so it is not clear how applicable it is to the broader IDD community. Our team at Brandeis University and the Boston University School of Public Health has been funded by the National Institute on Alcohol Abuse and Alcoholism (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. Our study is called INROADS-A: Intersecting Research on Addiction and Disability Services for Alcohol. This research builds on our first INROADS study, funded by the Administration for Community Living, which examined how the disability community is affected by problems with opioids. Several major findings spanned substance use, addiction, access to treatment, peer support, stigma and other barriers to care.
Although people with disabilities are at higher risk for having an opioid use disorder, once their increased risk of pain and thus higher access to medications was accounted for, their addiction risk was comparable to people without disabilities. Binge drinking or other at-risk drinking patterns occurred more often among people with disabilities than without. Daily nicotine or past-month drug use was higher among people with disabilities; again, chronic pain played a major role in the association of substance use and disability. People with disabilities and addiction to prescription opioids were about half as likely to receive medications - the gold standard for treating opioid addiction - as people without disabilities, even though there are no clinical reasons for these differences. Peer support has a long history of benefiting people with addiction as well as people with disabilities and should benefit people at this intersection, yet no models specific to disability and addiction have been identified. People with disabilities reported that lack of accommodations in substance use treatment programs made them feel ‘disadvantaged’ or like a ‘burden’ and that clinicians often do not know how to engage with them. They experienced layers of stigma and other systemic barriers that complicated treatment quality and access, which were compounded by intersecting identities (e.g., gender, race, homelessness).
In the new INROADS-A study, data from across the disability population will help us understand usage, consequences, and potentially how addiction develops. Specific to IDD, we intend to learn whether people with IDD start drinking alcohol at an older age than people without IDD, for example. Do they have the same kinds of problems as people without IDD? How many people with IDD binge drink or have an alcohol use disorder? How common are alcohol-related health problems, such as alcohol-related liver disease, among people with IDD and does this differ from the general population? Using health insurer data will allow us to consider what health problems occur after someone develops alcohol addiction. We will examine how successful people with IDD are once they start treatment for alcohol problems, and we will understand if people with IDD receive lower quality alcohol treatment, a signal of health inequity.
This is an exciting opportunity to improve care for people with IDD and to work to reduce stigma and discrimination around the intersection of disability and addiction. Our goal is to provide information that reduces disparities in treatment for addiction for people with disabilities, and results in fewer people with IDD experiencing harms related to substance use. We expect that our study findings will be used to improve treatment settings and to provide more personalized and inclusive treatment for people living with disabilities and addiction.