Behavioral Health Research and Policy Should Engage People With Disabilities

More than 70 million U.S. adults live with physical, sensory, cognitive, developmental, or intellectual disabilities. These individuals are more than twice as likely than other adults to report suicidality (thinking about, planning, and/or attempting suicide), 1.8 times as likely to have an alcohol use disorder, and 2.7 times as likely to have any other type of substance use disorder (SUD).

Victoria Lynch

Lisa Clemans-Cope

New research from the Urban Institute, with support from The Pew Charitable Trusts, highlights barriers for people with disabilities who need screening and treatment services for SUD and suicidality, including issues with physical access to support group meetings and health care facilities, tailored screening tools and treatment options, and provider awareness of disability-related needs. Victoria Lynch, principal research associate at the Urban Institute, and Lisa Clemans-Cope, senior fellow at the Urban Institute, authored four briefs on screening and treatment for suicide risk and screening and treatment for SUD. The briefs discuss recommendations to improve care for people with disabilities, such as promoting disability-inclusive practices; tailoring screening and treatment protocols; and advancing whole-person, trauma-informed care.

This interview with them has been edited for length and clarity.

Q: Why were you interested in research that focused on disability, SUD, and suicide?

Lynch: Throughout our careers, we’ve seen that SUD and suicidality co-occur—as well as with other conditions, such as disability. Yet too many prevention and treatment initiatives focus only on one condition, instead of taking a whole-person approach that addresses the interconnected nature of a person’s condition and behavioral health needs.

I have family members with disabilities, so I’ve learned firsthand how programs, institutions, and services, including health care, are not always optimal for someone with a disability.

Clemans-Cope: In addition, there’s very little research on this issue outside of a focus on prescription opioids. It can be difficult to engage disability groups about their experiences, and those conversations require care and expertise given the trauma, stigma, and misunderstanding many people have faced due to their conditions. We wanted to show funders and researchers the value and feasibility of studying this issue.

Q: You mentioned there’s been little research on disability, SUD, and suicide. So where did you go to get information?

Lynch: In our literature review, we found about 20 research articles each on suicide risk and SUD for people with disabilities, which, in our experience, is not a lot. To supplement our learning, we interviewed academic experts and people with lived expertise of disability co-occurring with suicide or SUD. These interviews allowed us to highlight the experiences of people with disabilities that have behavioral health needs, which are often not captured in the literature but have important implications for the care they receive.

Q: Your research highlighted some major gaps in care for people with disabilities who are also experiencing SUD or suicidality, despite being at a higher risk for these conditions compared to the general population. Why do these gaps exist?

Lynch: First, we should keep in mind that people with a disability can experience the same barriers to care as nondisabled people, such as affordability, lack of providers, and so on.

But many barriers are disability-specific, partly because health settings and approaches to care delivery are often not designed with disabled populations in mind. Physical accessibility of places where services are offered is still an issue, and screening tools may not be widely available in formats that accommodate the needs of people with vision or other impairments.

In our interviews, we heard that providers don’t always understand their patients’ experiences of having both a disability and a behavioral health condition. This lack of understanding can affect the quality of care they receive. Along those lines, one expert found that a lack in a provider’s disability competence—which is their knowledge about the experience and needs of individuals with disabilities—was linked to the underuse of SUD medication among disabled people.

Additionally, barriers can be specific to the type of disability a person has. You can’t assume someone with an intellectual disability will share the same barriers as someone with a motor disability, for example. And since there isn’t enough research on behavioral health screening tools and treatment for different types of disabilities, we don’t know how effective services are for people with specific disabilities.

Clemans-Cope: In almost every interview, we also heard that people with disabilities are afraid of losing autonomy in making health care decisions, and they fear involuntary or other unwanted treatment, especially in facilities without proper accommodations. This issue never came up in the literature review but is of particular concern because this fear can stop them from getting the care they need.

Q: Did anyone with lived expertise talk about what the medical system could do to make them feel more comfortable seeking care in these settings?

Lynch: We heard that it would be helpful if more medical settings employed providers with disabilities, including peer specialists for nonclinical support and providers with disability competence.

Clemans-Cope: Some folks specifically said that even if their provider doesn’t have the exact disability as them, a shared disability experience would materially improve trust and the entire care experience for them.

Q: How can researchers better engage participants with lived expertise in their study designs to help address some of these access and knowledge gaps?

Lynch: Clinical trials for behavioral health treatments should include people with disabilities. Since the experiences of people with disabilities are so diverse, one thing researchers can do is aim to get an adequate sample of participants with a specific disability type to truly understand the effectiveness and safety of a particular intervention for that specific disability.

Clemans-Cope: I also think it’s important that institutions doing disability-focused research get input from the disability community early in the study design phase, because once you start the research, it’s usually too late to change the design. You really can’t do meaningful research without adequately involving the people who are most affected by what you’re studying, so you need to engage with disabled people upstream.

Q: Is it important to include the perspective of people with lived expertise in behavioral health policymaking as well as research?

Lynch: It’s always important to include the point of view of the people most impacted by policy. Often policies that may work in theory don’t translate into practice. And we found that people with lived expertise were able to expound in much greater detail about the discrepancy between theory and practice than the experts who take an academic approach.

Q: Is there anything else you’d like to share about your research?

Lynch: Researchers, health practitioners, and policymakers need to be thinking a lot more about people with disabilities and how to meet their needs.

Clemans-Cope: That’s right: People with disabilities who also have a behavioral health condition are one of the most marginalized groups out there. There’s an incredibly rich opportunity to invest in research that can improve services for them. And ultimately, taking a trauma-informed, whole-person approach to this kind of care would benefit all people with behavioral health needs.