Adults With Disabilities Face Barriers to Behavioral Health Services

More than 70 million adults in the United States are living with a disability, which may include physical, sensory, cognitive, developmental, or intellectual difficulties. Research shows that this population is at an increased risk for substance use disorders (SUDs) and suicidality (which is thinking about, planning, and/or attempting suicide). For example, compared with the general population, people with disabilities are more than twice as likely to report suicidality, 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. Additionally, adults with disabilities can experience both suicidality and SUD, similar to nondisabled adults.

To better understand how people with disabilities access behavioral health services and whether those services are effective in meeting their needs, researchers from the Urban Institute, with support from The Pew Charitable Trusts, produced four briefs—based on a literature review as well as interviews both with academic researchers and with people with lived expertise of disability who also experience substance use disorder or suicidality. The briefs explore the current landscape of behavioral health services for the adult disability community, including screening and treatment for suicide risk and screening and treatment for SUD. Here are four of the key barriers identified in the briefs and three recommendations to address them.

Common barriers

The research found that although screening and treatment practices for SUD and suicidality differ, adults with disabilities experience many of the same obstacles to accessing services for both SUD and suicidality.

1. Transportation and accessibility

In some cases, people with disabilities simply cannot access screening or treatment services due to transportation difficulties or other challenges physically getting to treatment facilities, beyond those commonly experienced by people without disabilities who are seeking behavioral health services. Even if people with disabilities can get to a facility, through accessible van services or other transportation options, they may find that facilities can lack accessible parking, entrances, and interior spaces such as restrooms, hallways, and elevators. Some treatment facilities require clients to evacuate the building without help in case of an emergency, which may make these facilities off-limits for some.

What’s more, there are few screening tools with accessibility options to assist people with disabilities. For example, screening questionnaires in Braille or large print for people with vision impairments are not widely available.

2. Lack of tailored evidence-based screening tools and treatment options

Identifying risk is the first step in treating SUD and suicidality, and ineffective tools miss opportunities to recognize people in need and connect them to potentially lifesaving care. And few evidence-based screening tools and treatments for SUD and suicidality are tailored to people with disabilities. For example, some screening questionnaires might fail to adequately detect these conditions in people with cognitive, intellectual, or developmental differences because they are too lengthy or complex, or wrongly assume that respondents with these disabilities might interpret questions in the same way as those without.

Even once risk of suicide or SUD is identified in a person with a disability, few treatment options exist and their outcomes may vary. For example, chronic pain is common among people with disabilities and can adversely affect mental health and substance use. According to people with disabilities interviewed by the Urban Institute, treatment options that disregard how pain affects patients’ mental states or that restrict opioid use for pain management can discourage people with chronic pain from seeking care.

3. Provider education, bias, and stigma

Too often, health care providers lack the training, education, and experience necessary to understand, identify, and treat the behavioral health needs of patients with disabilities. This can contribute to what’s known as “provider bias.” For example, one large online survey of 200 autistic adults found that many of them wanted more mental health support but felt that health care providers didn’t understand their disability-related needs. Another research article found that providers tend to underestimate the resiliency and potential quality of life of their patients with disabilities, which may deter providers from recommending interventions for suicide risk or SUD. Finally, research shows that providers may misconstrue a patient’s not following a SUD treatment plan as intentional, rather than a sign that the provider isn’t meeting the patient’s accessibility needs. These beliefs can impact the quality of the care providers offer, including whether or not they screen for suicidality and SUD.

And, as a result of negative interactions with providers and others, people with disabilities may stigmatize their own conditions, which further holds them back from seeking care.

4. Research gaps

The Urban Institute briefs indicate that not enough behavioral health research considers the unique needs of people with disabilities. Clinical trials rarely include representation from the disability community and few studies vet screening and treatment methods for specific disability populations, such as autistic people or people with learning disabilities—making it hard to know how interventions would help. The Urban Institute’s research also found a dearth of literature assessing the impact of stigma and discrimination associated with having a disability and a behavioral health condition. Finally, not enough is known about where people with different disabilities seek behavioral health care—making it difficult to target services to the settings where the services would have the greatest impact. This lack of research makes it all the more challenging to close screening and treatment gaps.

Actions needed

The briefs’ authors recommend three steps to improve care:

1. Invest in research to understand the needs of people with disabilities and tailor interventions. More representation in clinical trials can help tailor screening and treatment interventions to meet the needs of this diverse population—as would an increased investment in research to better understand the impact of discrimination and stigma on seeking care.
2. Increase disability competence of the health care workforce to address the complex needs of people with disabilities. Providers can learn to have a whole-person and trauma-informed approach to care. Health settings can also employ people with disabilities to increase the disability competence of their workforces. The people interviewed by the Urban Institute also recommended that health care facilities, in addition to hiring clinicians with disabilities, offer people seeking care with support from peers experienced in navigating both disability and behavioral health needs.
3. In all efforts, engage the disability community. People with disabilities are experts on their own needs and challenges. As one interviewee with lived expertise told the Urban Institute researchers, “Go to your disability community. They’re the ones that know.”

Helping populations at high risk for SUD and suicidality requires research into the problem, training health care staff, and engagement with the affected community. The findings and recommendations from these briefs are a first step toward fostering a health system that better supports people experiencing SUD and suicidality.

If you or someone you know needs help, please call or text the Suicide and Crisis Lifeline at 988 or visit 988lifeline.org and click on the chat button.

Camille Clark is an associate and Frances McGaffey is a manager with The Pew Charitable Trusts’ substance use prevention and treatment initiative.

Farzana Akkas is a principal associate with Pew’s suicide risk reduction project.