September/October 2013 Issue
Substance Abuse in People With Intellectual and Developmental Disabilities — Breaking Down Treatment Barriers
When individuals with I/DD abuse substances, it’s often a hidden problem compounded by a lack of recognition and inadequate treatment options, but social workers are exploring solutions.
Treatment disparities between individuals with intellectual and developmental disabilities (I/DD) and those without them begins with underrecognition of the problem by those affected as well as by social workers and other care providers. People with I/DD often do not find their way into treatment either because they are not recognized as likely to use or abuse substances or because the manifestations of use and abuse are camouflaged by their intellectual or developmental limitations.
There’s a common misperception that clients with I/DD don’t drink or use drugs, says Susan Tatum, LCSW, assistant director of clinical and emergency services at the Alexandria Department of Community and Human Services in Virginia. They may experience problems resulting from substance abuse, she says, but substance use may not be suspected as the source of the problems.
Treatment Disparity Origins
Second, she explains, is the infantilization of people with I/DD. “If we do not see people with I/DD as adolescents and adults capable of emotions and behaviors common to anyone, we risk missing obvious signs of an altered state,” she notes.
The third factor is related to the array of services commonly available to clients with I/DD. “Although I was originally trained as a behavior analyst and remain very supportive of this approach,” Quintero says, “the primary or sole use of behavior analysis in many service settings results in placing clients on behavior plans when their behaviors are problematic and not considering the possibility that the behavior has now acquired an addictive component and is more resistant to external contingency management.”
Clinicians need to be aware that “in all the ways that clients with I/DD are more vulnerable for any reason, they can be vulnerable to substance use,” Tatum says.
People with I/DD have had a high level of abstinence, possibly due in part to the amount of supervision they usually have in their lives, she says. But, in many cases, that supervision is diminishing or absent. In a recent webinar on alcohol and drug use in individuals with I/DD, Genevieve Grady, PhD, an addictions and mental health specialist, noted that there is a growing number who may not have experienced as much institutionalization or insulation from the community.
Independent Living, Increased Risk
Experts agree that in addition to males, youths, and individuals with the mildest levels of impairment, those who live independently and have co-occurring mental disorders have a special risk (Taggart, McLaughlin, Quinn, & Milligan, 2006). A family history of abuse, particularly on the part of a father, increases the risk.
Individuals with I/DD who live in the community often become involved with drug or alcohol use for the same reasons and in the same ways as do others: wanting to fit in or to combat stress (Grady, 2013). “Drinking is a social activity that can help a person feel like part of the crowd. That social function is strong in people with I/DD,” Quintero says.
Disabilities may contribute additional motivations to drink and cloud people’s ability to apply good judgment surrounding social drinking. Clients with I/DD may have fewer resources, such as fewer people to talk to about their feelings or help them tolerate distress, so they may find comfort in substance use, Tatum suggests. The social stigma of having a disability also contributes to risk.
Less Use, More Abuse
Despite a clear need for treatment, individuals often fall through the cracks due in part to their inability to recognize the dangers associated with their behaviors. If they try alcohol or drugs and enjoy them, they’re likely to continue to use them and don’t always link cause and effect when problems occur, Tatum explains. When clients have more supervision, Quintero says caregivers may prompt them to seek help and direct them to sources of support. But the more clients with I/DD live independently, the more that safety net disappears.
Quintero speculates that clients with I/DD “may be less likely to seek services individually because the impact on family, work, etc.—which are the factors that generally drive people without I/DD to hit bottom and get help—are not as prevalent in their lives.” For example, she says, “Far fewer are employed, so losing a job is less common in a population that is seldom employed. Also, without cohorts who know about AA [Alcoholics Anonymous], alcoholism, etc., the individuals are simply unlikely to know about their options.”
Another related obstacle to treatment is the fact that signs of substance abuse in people with I/DD often are eclipsed by characteristics of their disabilities. Evidence of intoxication, such as slurred speech or clumsiness, easily is overlooked in individuals whose speech and motor skills may lack fluency (Grady, 2013). “Limited adaptive behaviors are part of the diagnosis,” Quintero agrees. Signs of use and abuse, she explains, “can manifest as problem behaviors linked to the I/DD, with society expecting people with I/DD to behave differently and missing the possibility that the person is inebriated.”
Limited Programs and Access
This population generally is not adequately treated, Quintero acknowledges. “We need more hard data on treatment methods for people with I/DD. There just isn’t enough to say what works and what doesn’t,” she says.
People with disabilities should be included in research and data statistics, notes Laura Yager, LPC, CPP-ATOD, director of partnerships and resource development for Fairfax-Falls Church Community Services Board in Virginia. Evidence of the lack of scholarly attention and training is apparent in the community where there may be no expert resource that social workers and others can turn to for support or services. Add that to a lack of recognition and subsequent referral to existing support sources, and a vicious cycle emerges.
“We’ve never had more than one or two individuals at a time who had co-occurring I/DD and substance abuse,” says Joanna Wise Barnes, bureau chief of I/DD services at Arlington County Department of Human Services in Virginia. Nonetheless, her efforts to address the disparity came up short. Even within a community dedicated to caring for individuals with intellectual disabilities, she couldn’t find even one person with professional expertise in treating individuals with a dual diagnosis of substance abuse and I/DD.
In general, Yager says services for people with I/DD are not accessible. For example, she observes, “There are more than 5 million students in special education programs in this country, and while substance abuse prevention programs are common in traditional classrooms across the country, there are few matching these students’ learning needs included in special education programs.”
Compounding the problem, Quintero says, “Inpatient programs often have an exclusionary criterion related to IQ, so people with I/DD may not get past the front door. Limited financial resources are also a consideration, since most people with I/DD have lower economic resources.”
What’s more, Yager says when programs are available or affordable, they’re often not well suited to a population with I/DD. “Existing substance abuse prevention, intervention, and treatment services are not sufficiently responsive to the needs of persons with disabilities,” she explains. “As a result, access to education, prevention, and treatment services for substance use and abuse can be limited, incomplete, or misdirected.”
One way in which existing services fail to help is that the health promotion materials they rely on are not targeted to the needs and abilities of individuals with intellectual disabilities, Yager says. Materials, including those related to substance abuse, she says, “may be written at too high a reading level for a person with an intellectual disability.” These clients “need access to substance abuse education and prevention materials that are culturally sensitive, linguistically accessible, and inclusive in order to meet their needs,” she says.
A case in point is the traditionally successful AA type program, according to Quintero. A care provider who wishes to support an I/DD client through referral to such a program will have difficulty finding one that “welcomes people with I/DD and has materials and cohorts at the appropriate cognitive level to create a genuine community of support,” she says.
The aspects of these programs that make them successful for others can spell failure for those with disabilities. “Rehabilitation programs rely on self-reflection and abstract concepts that can be difficult for a person with I/DD to understand,” Quintero explains. “The group format expects people to share their stories, take turns, allow others to speak, maintain anonymity, publicly expose themselves, and appeal to a higher power—are all excellent and effective methods for people without I/DD but challenging for those with limited cognition to negotiate successfully,” she says, adding that “there are many social nuances in AA, and a person who has inherent deficits is likely to struggle more than the average member.”
Yager says reading or writing assignments, for example, can be adapted to verbal discussions when literacy is an issue and, when clients with I/DD are part of group treatment settings, providing education to other group members about these disabilities and how they can be supportive group members can be useful. Some treatment concepts, such as those used in 12-step programs, are likely to prove too challenging for individuals with intellectual difficulties. However, it’s possible to adapt abstract concepts such as spirituality and the notion of a higher power to more concrete concepts such as empowerment and self-efficacy, she says.
“We need to explore ways of adapting the treatments that work with people who do not have I/DD and developing them within the systems of care that have been cobbled together over recent decades and that promote independence and personal choice,” Quintero concludes. “I haven’t figured out how to do this, and maybe trying to adapt present methods is not the best approach. Maybe we need to rewrite the treatment script for people with I/DD. Nothing will happen, however, unless we continue the dialogue.”
— Kate Jackson is an editor and freelance writer based in Milford, PA, and a frequent contributor to Social Work Today.
How Social Workers Can Help
Quintero also recommends that social workers acquaint themselves with service systems for people with I/DD in their respective states and local communities. “For example, many clinicians are not acquainted with the service array in the home and community-based services and other Medicaid waiver benefit plans for people with I/DD in their states. These systems have some core benefits, and it’s important to understand the array of resources and rules that drive these systems.”
Many states also are developing integrated managed care models for long-term services, according to Quintero. “Ideally, these services will combine physical and mental health services for people with I/DD. Social workers would do well to learn how our states plan to implement managed care, if that’s the direction a state is taking, and how substance abuse services will be addressed for people with I/DD. It’s good to raise this issue during the formative stage of development of these benefits.”
Slayter, E. M. (2010). Disparities in access to substance abuse treatment among people with intellectual disabilities and serious mental illness, Health and Social Work, 35(1), 49-59.
Taggart, L., McLaughlin, D., Quinn, B., & Milligan, V. (2006). An exploration of substance misuse in people with intellectual disabilities. J Intellect Disabil Res, 50(Pt 8), 588-597.