Providers and practitioners caring for individuals with I/DD have many issues to manage, and they may not have opioid use disorder (OUD) on their radar. However, while this may not be a common issue in homes, it can cause significant problems for people with OUD as well as their families. Jeffrey Bratberg, PharmD, FAPhA, a clinical professor in the College of Pharmacy at the University of Rhode Island, offers five facts about OUD in I/DD that can help raise awareness and recognition to improve treatment access and outcomes:

1. I/DD is not in itself a risk factor for OUD. However, the prevalence of OUD is double among individuals with I/DD. This is due in part to the high rate of psychiatric comorbidities that put them at risk, including depression, anxiety, and personality disorders, as well as other medical conditions that result in pharmacological complexity. Higher barriers to care for OUD screening, diagnosis, and treatment are other contributors. Lastly, social exclusion or isolation may also drive the higher incidence.

2. People with I/DD who have OUD may exhibit symptoms such as cravings for the drugs, increased behavioral problems, withdrawal from activities or social interactions, and increased tolerance for pain medications and the need for higher and higher doses. These symptoms may look similar to normal variations in behaviors. Caregivers should be alert to unusual changes outside normal variations that may be characteristics of OUD.

3. Health consequences of OUD are similar both for people with I/DD and those without. These include the possibility of opioid overdose, which is especially dangerous in this population because of the lack of education on possessing and using naloxone (an overdose antidote), which requires someone to administer it. In addition, if the individual is using injectable opioids, they are at greater risk for bloodborne infectious diseases, including HIV and hepatitis C (HCV). People who inject drugs should be tested for HIV and HCV, offered sterile syringes, or treatment to cure HCV and suppress HIV.

4. Health literacy presents a challenge to recovery. For instance, if a person with I/DD overdoses and is revived with naloxone, low health literacy may result in them leaving the hospital or other facility without getting the education, medication, or referrals necessary to treat the OUD. Appropriate materials that can meet the needs of individuals at different levels of literacy or communication types are needed.

5. OUD Stigma further complicates I/DD stigma. Healthcare providers, caregivers, family members, and others need to be educated about OUD to reduce stigma, concurrent with efforts to reduce stigma surrounding I/DD itself. Every environment should be a welcoming, judgment-free space and involve education about who is at higher risk for OUD and what to do if they suspect someone has a problem. Family members and others who spend the most time with patients should be trained to identify patterns of medication use and behaviors. If they notice signs of OUD or that someone’s pain seems to be getting worse, they should contact their physician, pharmacist, or other practitioner promptly.

Optimizing Non-pharmacological Interventions
As with other patient populations, I/DD providers should focus on nonopioid treatments and nonpharmacologic interventions to initially treat acute and chronic pain. These include non-opioid pain medications, physical therapy, music therapy, and more. Bratberg emphasized the value of holistic care, including knowing what types and severity of I/DD someone has and what cognitive issues might make communication about medication and other therapies’ effectiveness challenging.

Prevention Starts with Health, Family, and Purpose
It is important, Bratberg says, to seek the root cause of pain and look at social determinants of health. What physical conditions might be causing pain? Does the person have a social support network or are they frequently alone and isolated? Do they have friends and family to support a healthy lifestyle? Do they have opportunities for exercise and physical activity? Are they depressed or anxious? “People with I/DD may not be able or willing to communicate about pain, so we need to watch for behaviors or vocalizations that suggest pain. We also need to talk to family members,” he says.

Family communication should include information about the risks and benefits of opioids and the need to look at other potential treatments. Family and staff alike need to be trained to watch for behavioral or other changes that raise red flags.

Increasing awareness and helping providers, families, and others understand how to prevent, identify, and treat OUD in the I/DD population is key to maximizing pain management while keeping people safe and improving quality of life.