Rose C. B. Singh, MSW
Andrea J. Murray-Lichtman, MSW, PhD
Elspeth Slayter, MSW, MA, PhD
This chapter provides an overview of disability, mental health, and addictions from a social work perspective. Language, terminology, and models of disability, mental health, and addictions are introduced. The history and context of mental health and addictions in the disability communities within the United States is explored. Prevalence and risk factors of mental health and substance use in the disability community within the United States is presented, followed by treatment options and barriers to treatment. The dearth of evidence-based practice models for behavioral health assessment and treatment for specific disability communities, including dDeaf/hard of hearing people and intellectually or developmentally disabled people are addressed. Key laws, policies and programs in the United States, which are relevant to disabled people and behavioral health are reviewed. Practice implications for social work, as well as voices and perspectives of disabled people with mental health conditions and addictions are presented, followed by critical theoretical perspectives and application of a model for social work practice with disabled people with lived experience of mental health and substance use. Lastly, a case study with questions for discussion is included.
Mental health and substance use disorders exist across the population in the United States (U.S.) and are considered disabilities under the Americans with Disabilities Act (ADA) of 1990. However, not all people who live with these conditions may be perceived as disabled, consider themselves as disabled, or view themselves as members of the disability community. Additionally, people using substances who overdose may acquire a disability (Ore et al., 2019) and live with co-occurring mental health disorders. Further, disabled people may also live with mental health conditions and addictions, and these conditions are prevalent across the disability community. For disabled people diagnosed with mental health and substance use disorders, disability may or may not be their primary concern and their mental health or substance use may or may not be impacting them most. However, disabled people with mental health conditions and who use substances may find that social work or health professionals make determinations for them without full consideration of their experiences. Further, disabled people with mental health conditions and addictions often encounter obstacles in accessing services and support (Cree et al., 2020), as disability, mental health, and addictions resources have existed separately and have not captured the realities and lived experience of disabled people who have mental health concerns and substance use issues. Moreover, the stigma, prejudice, discrimination, and oppression that exists and is experienced by disabled people with mental health concerns and addictions creates devasting impacts on their quality-of-life trajectories. In the next section, we introduce language, terminology, and models of disability, mental health, and addictions, to help build understanding of each before moving into discussions that encompass experiences of disability, mental health, and addictions together.
Language and Terminology
Critically thinking and reflecting on the language and terminology we, as social workers, use is central to working with the disability community and from an intersectional, critical cultural competency, and anti-oppressive perspective, as outlined by Johnson et al., 2022 in chapter two of this text, in which a practice model for empowerment-oriented disability practice is presented. Further, we acknowledge that the people and communities we are part of and/or work with may use various terms and that language and terminology shifts over time. Thus, it is crucial to listen and be responsive to the language and terms suggested and used by the people and communities you are working with (Johnson et al., 2022).
A more extensive definition and discussion of disability, impairment, disability identity, culture and community are offered by Slayter and Johnson (2022) in chapter one of this text, in which key concepts about disability social work are presented. Here, we briefly highlight impairment and disability as well as disability identity and community before providing an overview of mental health and addictions. Drawing on the social model of disability, impairment is a “condition or attribute” whereas disability is “how society responded to, or failed to respond to, the needs of people with impairments” (Cameron, 2014, p. 137). This perspective acknowledges the impacts of living with an impairment, while emphasizing the attitudinal, structural, and systemic barriers related to disability.
Disability, Identity, and Community
How someone describes their identity and lived experiences is personal, political, and contextual. In this chapter, with disability, we primarily use identity first language, for instance, disabled people. Identity first language puts disability at the forefront, centering the lived experience of disability and disability identity, culture, and pride (Slayter & Johnson, 2022). In comparison, person first language, often used in social work practice, emphasizes the person before noting disability, for example, person with disabilities (Slayter & Johnson, 2022). A critique of person first language is it individualizes disability, rather than recognizing how people are disabled by attitudinal, structural, and systemic barriers. Disability community broadly refers to people who self-identify as disabled, have shared and unique experiences of disability, but also have various personal and social identities, and positionalities (Johnson et al., 2022; Slayter & Johnson, 2022).
Mental health is described across a spectrum, from wellness to severe and persistent impacts to functioning (Jones et al., 2021; World Health Organization, 2019). People may experience mental wellness to significant mental distress and impairment (Cree et al., 2020). Similar to those represented in disability studies, models pertaining to mental health offer medical and social perspectives. The medical model positions mental health conditions as individualized illnesses, diseases, or disorders of the brain (Beresford, 2012; Burstow, 2015; Cohen, 2008; Joseph, 2013), classified and diagnosed by health professionals according to the Diagnostic and Statistical Manual of Mental Disorders (or DSM) (Doherty, 2005; Fawcett, 2012). Mental health diagnoses in the DSM include (but are not limited to) anxiety disorders (e.g., generalized anxiety disorder, panic disorder), depressive disorders (e.g., major depressive disorder), and schizophrenia spectrum and other psychotic disorders (e.g., schizophrenia, schizoaffective disorder) (American Psychiatric Association, 2022; Nussbaum, 2013). Comparatively, what Beresford (2012) refers to as the “social model of madness and distress” (p. 65) centers on the lived experience and voices of people with mental health concerns. This social model also locates societal constructs, discourses, and contexts as the issue and not the individual living with mental health conditions (Beresford, 2012).
Mental Health, Identity, and Community
Persons with mental health conditions use various language and terms, to self-identify or to share what they are living with. Some people may use the diagnostic labels ascribed to them by health professionals, while other people may use identity-first language and reclaimed terms – or all depending on their preferences, experiences, and contexts. Examples of language and terms include: psychiatric disabilities, psychiatric survivors, ex-patients, mental health service users, consumers, or mad (Boxall & Beresford, 2013; Jones et al., 2021; Price, 2013; Reid & Poole, 2013). In this chapter, we use the term person or people with a mental health condition. However, when describing the literature or research cited, we follow the language utilized since specific diagnoses may be part of the criteria for participants in the studies referenced. The community of people with lived experience of mental health concerns is diverse, and they may or may not align with having a disabling condition.
Considering addiction as occurring across a continuum provides a broader understanding of the experiences of people using substances (Csiernik, 2016). For instance, people may use substances but not be addicted. Comparatively, someone may use a substance or substances and be both physically and psychologically dependent on the drug(s) they use (Csiernik & Rowe, 2017). Some people may use substances and wish to seek support, others may not want to seek treatment, or be mandated to attend treatment (Smith, 2022). As with disability and mental health, there are models of addiction that give different perspectives on substance use. For instance, the medical model views addiction as a brain disease (Pickard et al., 2015). Within the Diagnostic and Statistical Manual of Mental Disorders manual, the DSM-5, specific diagnostic criteria are devoted to substance use disorders and the subsequent symptoms, behaviors, and problems that someone experiences when using such substances (Nussbaum, 2013). In contrast, the moral model of addiction situates substance use as the personal responsibility and failure of the person using drugs (Pickard et al., 2015), which has drastic and considerable negative implications for addictions policies, programs, treatment, and support for people who use substances (Csiernik, 2016). While there are models of addiction from a recovery and a biopsychosocial lens (Begun, 2017; Csiernik, 2016; Csiernik & Rowe, 2017), a comparable social model as exists for disability and mental health is absent for addiction. We propose a social model of substance use and addiction, which considers how people who use substances navigate their experiences of using drugs in addition to living with the stigma, discrimination, limited support, and resources from society around them.
Substance Use, Identity, and Community
The language and terminology used when referring to addictions has long been stigmatizing, with “addict” being such an example (Csiernik & Rowe, 2017, p. 22). People who use substances have various ways they describe their experiences of addiction and communities. Options may include person with an addiction (Csiernik & Rowe, 2017), people who use drugs (Mitra et al., 2021; Salazar et al., 2021; Smith, 2016), or people with lived or living experience of drug use (People with Lived Expertise of Drug Use National Working Group et al., 2021). In this chapter, we also use the term person with a substance use condition or person with substance use disorder, especially where the literature and research cited refers to people who have diagnosed addictions.
Concurrent or Co-Occurring Conditions, Dual Diagnosis
Not only is there language and terminology that reflects a singular experience of disability, mental health, or addictions, there is medicalized terminology utilized to describe when a person is diagnosed with a mental health condition and addiction. For instance, the term concurrent disorder is often used when a person has both mental health and substance use diagnoses (Kimberley & Ormond, 2017). This may also be labeled as co-occurring disorders in disability contexts (NIMH, 2021). Concurrent or co-occurring disorders may also be referred to as dual diagnosis as well (NAMI, 2020). However, dual diagnosis in disability settings more commonly denotes a developmental disability as well as a mental health diagnosis (Lunsky & Weiss, 2012). Behavioral health is a commonly used term in the United States, which, in this context, often indicates treatment and services addressing mental health and substance use (SAMHSA, 2021). Moving away from this medicalized terminology, which may focus on labels and individualized issues or perceived deficits, we strive to use language that centers the person and their lived experience, while also acknowledging the limitations of the literature and influences of the medical model in our field. As such, we shift between terms that honor identity and lived experience to terms that are more medicalized when citing behavioral health literature and research.
History of Mental Health and Substance Use Disorders in the Disability Communities
There is a long history of stigma surrounding the presence of mental health and substance use disorders in general in western society. Throughout history this phenomenon has confounded treatment and approaches to working with people living with mental health and substance use disorders. The paradox of responding to mental health and substance use disorders for western society has often rested on the intertwinement of social forces like religion, politics, economics, and the philosophical values that undergird the determination of who and what condition of human suffering is deemed worthy of support (Daugherty et al., 2020; Grob, 1973; Shorter, 2008). Therefore, despite the advancement of medicine and scientific approaches, many assessing the advances of mental health and substance use disorder treatment claim improvements in the field still vacillate between outright harm such as criminalization to underfunded benevolence that applies a band-aid solution (Daugherty et al., 2020; Scull, 2015). Indeed, depending on where a body lands on the spectrum of worthiness shaped and continues to inform the approach to treatment or the mistreatment of those bodies in need of mental health and substance use disorder treatment (Medlock et al., 2019; Metzl, 2009). Consequently, the stigma associated with mental health and substance use disorders intersect with the judgments made of those living with disabilities, confounding the identification and treatment of mental health and substance use disorders in the disability communities. The oppression and racism that exist against people of color and other marginalized identities in society often magnify the mistreatment in this regard. This is specifically troubling for the health and well-being of those living within the disability communities. This section provides a timeline of the history of mental health and substance use disorders and the intersections with the disability community within the United States.
A review of the history of mental health and substance use disorders in the United States demonstrates the evolution of society’s view of mental health disorders and substance use disorders. Given the influence/predominance of religion on the social and political philosophy underlying societal norms in the history of civilization, Scull (2015) found that various religious influences equated madness with ties to punishments from supernatural beings. Historically, this often meant that people were removed or set away from their families and society to face this punishment from their deity (Scull, 2015). The linking of mental illness to supernatural evil by religious influences eventually began to wane in modern history.
During the 1700s, madness was seen as an organic or physical occurrence with no connection to the soul or moral accountability (Augstein, 1996). While people were no longer set aside from the community to be dealt with by their deity, people who were diagnosed with mental illness were institutionalized in asylums and often treated inhumanely (Chapman et al., 2014). People living with disabilities and who were poor during the colonial period were often confined and criminalized while people with more financial means were taken care of within their families (Chapman et al., 2014). Enslaved Africans often saw much harsher treatment and were not included in the “rehabilitative” aspects of the changes that began to occur on behalf of those living with mental illness. By the end of the century, a movement focusing on the moral treatment of people living with mental illness began to develop (Chapman et al., 2014). Despite this movement, throughout the 1800s, there was an increase in the number of asylums around the country and specialized institutional settings for people living with certain disabilities, e.g., blindness and deafness. Some leaders in the moral movement desired more humane treatment for people living with mental illness and yet saw institutionalized ‘rehabilitation and training’ as options for people with some disabilities (Augstein, 1996; Chapman et al., 2014).
In 1844, the Association of Medical Superintendents of American Institutions (AMSAI) for the Insane accepted psychiatry as a medical specialty (Suris et al., 2016). This closed the chapter on the overt influence of religion on the treatment of mental illness and disability shepherding the United States into the 1900s and a more medicalized approach to mental health and substance use disorders and disability. However, as the next sections demonstrate, societal views and influence are an enduring theme in the treatment of mental health and substance use disorders and disability. The social influence continued to impact care positively and negatively for those living with disabilities and mental health and substance use disorders (Scull, 2015; Shorter, 2008).
The era of the 1900s saw many changes in the medical treatment of people living with mental health and substance use disorders and disability. As the century turned, there was a transition from the pejorative categorization of people living with mental illness in the asylum as ‘asylum inmates’ to ‘patients’. The ‘mental hygiene’ movement emerged because of the atrocities that were happening to people institutionalized within asylums. The mental hygiene movement sought to promote and preserve mental health and focused on prevention and efforts to re-socialize the patients (Bridges, 1928). By 1921, the American Psychiatric Association emerged from the AMSAI, although it would be several decades before standardized diagnosis and treatment would occur. Prior to this time, diagnostic systems existed in siloed institutions across the United States with little agreement on the criteria for mental health diagnoses (Kendler et al., 2010; Suris et al., 2016). During the 1930s, originating in Europe, the use of electric shock and lobotomy for treatment became standard treatment for several mental health diagnoses including obsessive-compulsive disorders, affective disorders, and schizophrenia in the United States (Kurcharski, 1984; Lebensohn, 1999). Despite the negative patient outcomes and the social and media attention, the use of lobotomy continued until psychotropic medications were developed in the mid-1950s (Caruso & Sheehan, 2017). Electric shock also known as electroconvulsive therapy (ECT) was first used in the United States in 1940 (Lebensohn, 1999) and is still used to some degree to this day (Shorter, 2008; Weiner & Coffey, 1991). From the 1930s to the 1950s the population of hospitalized people living with mental illness grew, as did the devastating impact of eugenics, involuntary sterilization, of those deemed mentally ill and living with intellectual disabilities (Reilly, 1987).
The 1940s saw the increasing popularity of Freudian theory which offered a psychoanalytic approach to treatment which broke with conceptualization of mental health and substance use disorders as connected to neuropathology. Initially, Freud explained human behavior and psychological distress as evolving from sexual trauma; however, after World War I sexual trauma shifted to any trauma (Kenny, n.d.; Scull, 2015) and unconscious impulses hidden in the individual psyche. Those supporting Freud’s theory believed psychoanalysis provided the means through talk therapy to ‘cure’ these problems (Scull, 2015). Freudian theories dominated psychiatry for almost two decades and tension existed between psychoanalysis and psychiatric diagnosis (Kendler et al., 2010). A domination of Freudian theory and the lack of focus on the social context and organic disease of people living with mental health and substance use disorders and disability may have furthered marginalization. However, the mechanism of a mental health or substance use disorder is not always considered the same as a cause.
Psychoanalysis and psychodynamic diagnosis reigned as the dominant method in mental health and substance use disorder treatment. It finally lost its foothold in psychiatry in the 1950s with the advent of psychiatric medications and research discoveries of the neurotransmitters in the brain, which indicated a neurological basis of mental health disorders (Suris et al., 2016). Another change was the Children’s Bureau’s focus on children’s welfare and the start of the child’s guidance clinics (Lindenmeyer, n.d.). Mental health among children became a focal point especially after WWII as the childhood backgrounds of soldiers became a resource to retrospectively track behavioral issues and their connections to outcomes. In 1946, President Truman signed the National Mental Health Act to combat mental illness (Schowalter, 2003).
The 1950s heralded the use of psychotropic medications to treat anxiety and psychiatric symptoms. There was also success in the use of certain drugs, like Thorazine, to treat people living with chronic mental illness (Shorter, 2008). Another factor at play was the media coverage of the ills and mistreatment of patients living in mental hospitals. This exposure moved mental illness from the shadows into the public spotlight. Movies made popular during this time and into the 1970s often dramatized the mistreatment of people living with mental illness and showcased the inhumanity that was hidden from view of relatives and the general public (e.g., The Snake Pit and One Flew Over the Cuckoo’s Nest). The widespread coverage and outrage by the public heralded a push for public policy for deinstitutionalization and more humane treatment of people living with mental illness. As such, over the next several decades policy developed to move people with serious brain disorders out of large state institutions and then permanently closing part or all those institutions. Following the closing of mental institutions, efforts began to re-socialize patients and begin treatment in the community (Scull, 2015; Yohanna, 2013).
The development of the Diagnostic and Statistical Manual (DSM) and the International Classification of Diseases (ICD) aided the standardization and classification of mental health and substance use disorders (Fischer, 2012). Yet, the DSM began in controversy and still holds a controversial place as the diagnoses have been heavily influenced by social norms, positivist claims, and the pathologizing of non-normative behavior (Galatzer-Levy & Galatzer-Levy, 2007; Scull, 2015; Welch et al., 2013). In fact, along with cultural identities, social identities were impacted by the DSM. Homosexuality, a term used to describe same gender emotional or physical relationships, was included as pathological behavior, and not removed as a disorder from the DSM until 1973 (Drescher, 2015). The DSM’s ties to the pharmaceutical industry have also come under scrutiny (Scull, 2015; Welch et al., 2013). Daughtery et al.’s (2020) assessment of society’s vacillation between treatment and mistreatment of people living with mental health and substance use disorders still rings true and impacts standardization of mental health and substance use disorders.
The 21st century response to mental health and substance use disorders is still weighted under the societal values of our distant and recent history. While our approach has moved from those living with mental health conditions, substance use, and disabilities being housed in large hospitals, we have institutionalized disabled people with mental health conditions and addictions using our criminal legal systems (Fazel et al., 2016; Hartwell, 2003). The United States falls far short of its goals to integrate effective treatment of disabled people living with mental health and substance use disorders. The mistreatment of mental health and substance use disorders contribute to the growing number of those experiencing homelessness and incarceration (Hartwell, 2003). Currently, jails and prison often serve as the first place that many people in the United States receive mental health services (Subramanian et al., 2015). The criminalization of mental health and substance use disorders has been a boon for the prison industrial complex but has fallen far short of the help needed by disabled people living with mental health and substance use disorders (view Chapter 12 “Disability and the Criminal Legal System” for more information on criminalization). Unfortunately, the traumatization and re-traumatization within the criminal legal system creates a cyclical pattern and revolving door in the criminal legal system for disabled people living with mental health and substance use disorders. The disparate treatment and mistreatment of mental health and substance use disorders is still a problem, and the impact is devastating for disabled people.
Prevalence of Mental Health and Substance Use Disorders in the Disability Communities
Mental Health Disorders
Mental health and substance use disorders are both prevalent in disability communities and also constitute conditions that qualify people as members of disability communities. While there is limited literature on the prevalence of mental health conditions in disability communities broadly, we do have one source. Starting with mental health, based on data from the Centers for Disease Control and Prevention, we know that one third of disabled adults experience frequent mental distress as compared with just over seven percent of the non-disabled population. This translates into almost 17 and a half million adults in the United States. The term ‘frequent mental distress’ is defined as “14 or more self-reported mentally unhealthy days in the past 30 days” and “is associated with adverse health behaviors, increased use of health services, mental health conditions (e.g., diagnosis of major depressive disorder), chronic diseases, and functional limitations (Cree et al., 2020, p. 1238). This study also looked at the prevalence of frequent mental distress within segments of the disability community and found that people with comorbid cognitive and physical/mobility impairments were most likely to report these conditions. 55.6% of the population with cognitive and physical or mobility impairments had frequent mental distress (Cree et al., 2020, p. 1238). Other examinations of demographics among the disability community with respect to frequent mental distress revealed that people identifying as female, unmarried, unemployed, LGBTQIA or living in lower income households were more likely to experience this condition as compared to people in opposing categories (Cree et al., 2020, p. 1239). Further members of the disability community who identified as Latinx/Hispanic, Asian/Pacific Islander or middle aged reported less mental distress (Cree et al., 2020, p. 1240). Interestingly, among veterans and employed people, there were no differences in the prevalence of frequent mental distress (Cree et al., 2020, p. 1240).
National data looking at the prevalence of mental health conditions in the general population (not specific to the disability community) reveals that 1 in 5 U.S. adults experience mental health conditions each year, whereas 1 in 20 U.S. adults experience what is referred to as serious mental illness, at the higher end of the spectrum, each year (National Alliance on Mental Illness, 2022). Among young people aged 6 to 17 years old, 1 in 6 experience a mental health condition annually (National Alliance on Mental Illness, 2022). We also know that half of all lifetime mental health conditions commence by age 14, and roughly three-quarters commence by age 24 (National Alliance on Mental Illness, 2022). Another alarming fact about the mental health status of young people is that suicide is the second leading cause of death among people aged 10-34 (National Alliance on Mental Illness, 2022).
Substance Use Disorders
Moving to what is known about the prevalence of substance use disorders in the disability community, relatively few resources exist about the national prevalence of this condition in this community. Estimates from the United States Department of Health and Human Services estimates that 4.7 million adults have substance use disorders comorbid to their disabilities (Office of Disability, 2006a; 2006b). This suggests that 12% of the disabled adult U.S. population has a substance use disorder and that this is 3% less than the non-disabled population. Other estimates from 2007 suggest that substance use disorder prevalence rates are twice as high among disabled adults versus non-disabled adults (Krahn et al., 2007). Further over 20% of people eligible for the services of vocational rehabilitation services in state systems report substance use disorders (CSAT, 2009; Moore et al., 1994; Moore & Li, 1998). Another older national study (one of very few, which is why we report on it) determined that at least half of disabled adults with co-occurring substance use disorders were not being identified accurately by the service systems they were involved in (Rehabilitation Research and Training Center on Drugs and Disability (RRTC), 1996).
One other population-based study used state data to look at the question of the prevalence of disability among those receiving substance use disorder treatment, and while not an ideal study, it does give us some insights for social work practice. New York State is one of few states that gathers data on this topic in all addiction treatment facilities. Although the data from this study are also older, sometimes older data are the best we have to understand a phenomenon. In 1997, these data showed that of a quarter of a million people receiving services at licensed addiction programs in New York, 22.4% were listed as being physically or mentally disabled. Looking at this specific group, almost 60% had a disability that was not related to mental illness, in other words it related to mobility, vision impairment, or hearing impairment, for example (OASAS, 1998). While these data were gathered by addiction treatment staff who were not trained to clinically diagnose disability, these may be undercounts. Therefore, the state estimates that given the presence of ‘hidden’ disabling conditions the prevalence rate could be 40 percent of all clients served in their system. Finally, looking just at alcohol use in more recent data, estimates from the Centers for Disease Control and Prevention suggest that slightly over a third of the adult members of the disability community report engaging in binge drinking (Cree et al., 2020, p. 1). Binge drinking was defined here as having 5 or more drinks for men or 4 or more drinks for women on an occasion in the past 30 days.
A number of studies have also examined the prevalence of specific mental health conditions and substance use disorders within segments of the disability community, although the literature is not comprehensive about reporting on all conditions in all parts of the disability community. Significant research has focused on the prevalence of mental health conditions among people with intellectual and developmental disabilities and autism, so much so that there is an organization devoted to this topic, the National Association for the Dually Diagnosed (NADD). This organization has a wealth of clinical practice information for social workers and other clinicians engaged in practice with members of this community. Below, we share a bit about what is known about the prevalence of specific conditions in this community as an example of how the treatment literature focuses on one population.
People with Intellectual and Developmental Disabilities and Co-Occurring Conditions
Looking at mental health, as with the overall disability community, people with intellectual and developmental disabilities are widely documented as having higher rates of these conditions (Dagnan et al., 2018). Estimates from an English population-based study suggest that between 25-40% of the community with intellectual and developmental disabilities have these conditions (Giraud-Saunders, 2011). Specifically, these conditions include affective and anxiety disorders – including generalized anxiety disorder, agoraphobia, social phobia, post-traumatic stress disorder and other specific phobias (Dagnan et al., 2018).
With respect to substance use disorders, a literature review by Didden et al. (2020) establishes that many individuals with mild intellectual disabilities use tobacco, alcohol, and drugs but that rates of substance use disorder are either the same as or higher than non-disabled peers. More specific estimates suggest that between 7-8 million people with intellectual and developmental disability experience this condition (Chapman & Wu, 2012). This translates to between 1-20% of the population depending on the study sample (Salavert et al., 2018). Looking just at alcohol use, the 2014 National Health Interview Survey (NHIS) revealed that of adults with intellectual and developmental disabilities, 22.3% of the population reported any drinking at all, and only 1% reported feeling that they had a problem with alcohol (Slayter, 2020).
Co-occurring mental health and substance use disorders are also noted among people with intellectual and developmental disabilities. Within mental health services agencies, this population is noted to range from between 1% and 34% of clinical populations (Doody et al., 2000; Edelstein & Glenwick, 1997; Fotheringham et al., 1993; Holden & Neff, 2000; Strain et al., 1993). In a national study of Medicaid insurance beneficiaries in the U.S., it was noted that 54% of people with co-occurring intellectual disabilities and substance use disorders who were receiving addiction treatment also had a mental health condition (Slayter, 2010).
Challenging behaviors are also noted among people with intellectual and developmental disabilities at a rate of 10-15% of the population (Emerson et al., 2001). Challenging behaviors include aggression, self-injury, and property destruction that are often lifelong and can result in negative outcomes such as physical injury to oneself or others (Matson et al., 2011). Another segment of the community to consider is children with intellectual disabilities who have co-occurring autism spectrum disorder. This population is noted to present with higher rates of challenging or ‘problem behaviors’ as compared to their typically developing peers (Gurney et al., 2006). Problem behavior refers to actions that pose risks to a person or others around them, and that is disruptive to a person’s functioning. For example, these behaviors can include self-injurious behaviors such as head banging, skin picking, self-biting, and head hitting. Other behaviors might include aggression towards other people the ingestion of non-food substances (known as pica), destroying property and throwing items, and running away from a caregiver (Newcomb & Hagopian, 2018)
Finally, another topic for a social work practitioner interested in this population to learn about relates to sex offenses. Although some of these studies are old, they are seminal studies on the topic. Estimates suggest that rates of criminal offenders with intellectual and developmental disabilities convicted of a sexual offence are circa 3.7%, compared to 4% of offenders convicted without intellectual and developmental disabilities (Hayes, 1991; Jones & Chaplin, 2017; Swanson & Garwick, 1990). This is important context due to the fact that the common narrative is that people with intellectual and developmental disabilities are overrepresented among sex offenders. This is due to the fact that many studies on the topic take place in locked hospital settings or prisons, which skews the sample (Lindsay, 2002) and, therefore, are not representative of the larger population of people with intellectual and developmental disabilities.
This section has given an idea of how mental health and substance use disorder diagnoses play out prevalence-wise in the disability community, which will give you an indication of what to consider for client populations you work with. In the next section of the chapter, we highlight how the disability community receives services for these conditions in the United States
Mental Health and Substance Use Disorder Treatment Service Trends
While disability communities need the same care in mental health and substance use disorder services as the rest of the population, there are aspects of treatment in which they may need accessibility accommodations or modifications. However, there is only a very small empirical literature base on interventions for selected members of disability communities, so it is difficult to address this topic for all of the communities. To inform your social work practice, ensure best practice by paying attention to empirical research and critically review what the literature states about the specific population and potential interventions for work with them.
In considering service trends related to mental health and substance use disorder treatment experienced by disability communities in the United States, we are going to focus on challenges with access to care, what we know about treatment outcomes and the nascent clinical guidance for supporting treatment. Although a discussion of how these topics play out for various groups within disability communities (i.e., d/Deaf and Hard-of-Hearing, people who are b/Blind, or people with physical disabilities) is impossible given the scope and space limitations of this chapter, one example is provided for the population with intellectual developmental disorders.
Access to Mental Health and Substance Use Disorder Care for Disability Communities
A range of different types of access barriers to treatment are documented for many populations with disabilities across both mental health and substance use disorder service settings (West, 2007). Such barriers may be physical, visual, cognitive, and more (e.g. wheelchair access, Braille paperwork, relay services). Notable access barriers in the provision of mental health services have been noted for disabled people broadly (Kattari, 2020) and specific groups, such as the d/Deaf community (Austin & McGrath, 2006), people with mental health disorders (Rowan et al., 2013), and people with intellectual and developmental disabilities (Whittle et al., 2019). While we do not have national data on access for disability communities in both of these sectors, we do have some strong population-based studies that can help illustrate substance use disorder treatment access (e.g., Krahn et al., 2007). One seminal study in the state of Oregon documented that disabled adults in the Medicaid program are only half as likely as other Medicaid enrollees to enter substance use disorder treatment during any year (Krahn et al., 2007). Therefore, although substance use disorder treatment needs are higher, entry into such care is lower. Specific concerns such as physical access barriers, inappropriate or inaccessible educational materials, and the lack of sign language interpreters can get in the way of disability communities’ members seeking out and receiving treatment (Office of Disability, 2006b).
Example of Access Barriers: Substance Use Disorder Treatment for People with Intellectual and Developmental Disabilities
Despite being at high risk of addictions, people with intellectual and developmental disabilities have less access to appropriate treatment services. We know that among people with Medicaid coverage across 49 states, this population that had co-occurring substance use disorders were less likely to initiate and attend treatment, had shorter lengths of stay, and were more likely to drop out of treatment than those without intellectual and developmental disabilities (Slayter et al., 2010). One reason for lower substance use disorder treatment use among these individuals is lack of connection between the addiction and disability services systems, which are characterized by different treatment cultures, philosophies, values and definitions of success (Slayter & Steenrod, 2009). For example, whereas laboratory-verified abstinence from alcohol and drugs may be the ‘gold standard’ measure of treatment effectiveness in addictions treatment, the benefits of maintaining abstinence in the disability system (not uncommonly achieved by placing individuals in more restrictive settings) must be balanced against individual rights, freedoms, and the dignity of risk. Therefore, addiction treatment organizations are generally unfamiliar with this population and their needs, and disability programs generally lack expertise in the principles of effective addiction treatment (Slayter, 2008).
Perhaps the most substantial access barrier faced by people with intellectual and developmental disabilities is a lack of access to developmentally appropriate treatment (Hammink et al., 2007). Most programs use cognitive behavioral therapy (CBT) for addiction (McHugh et al., 2010), which helps people identify triggers that increase the risk of alcohol or drug use, develop plans to avoid those triggers, and learn new strategies to cope with unavoidable triggers (Copersino et al., 2022). CBT requires abstract thinking, planning and reasoning that often goes beyond the abilities of people with intellectual and developmental disabilities. Therefore, in standard addiction treatment, this population is more likely to be tasked with unrealistic treatment goals (Phillips, 2004), more likely to have their limited comprehension of this treatment modality be misunderstood for lack of treatment motivation (CSAT, 1998), and more likely to be identified as a ‘treatment failure’ (McGillivray & Newton, 2016; Slayter & Copersino, 2018).
The above-described barriers are apparent in the data in a range of studies that have examined different populations within the community of people with intellectual and developmental disabilities. In a series of national studies looking at people receiving Medicaid health insurance coverage, access to treatment in this population was examined (Slayter, 2016; 2010a; 2010b; 2010c). Adults with intellectual and developmental disabilities were approximately 30% less likely to initiate or begin treatment and approximately 32% less likely to engage or remain in treatment as compared with people without disabilities, controlling for benefit coverage, comorbidities, geographic location, gender, race, and age.
This same analysis was done for several populations within the community of people with intellectual and developmental disabilities. First, people with co-occurring intellectual or developmental disability, substance use disorder and serious mental health conditions were less likely than their counterparts without these conditions to access treatment. Factors associated with initiating substance use disorder treatment in this group included being non-White, living in a rural area, and not being dually eligible for Medicare. Factors associated with engagement, or remaining in care for up to a month, included all of the same as those for initiation and having a fee-for-service plan or a chronic substance use disorder-related condition (such as cirrhosis of the liver). Second, women with intellectual and developmental disabilities were less likely than men with the same disability (or women without disabilities) to access treatment, suggesting both gender and disability-related barriers (Slayter, 2016). Women with intellectual and developmental disabilities who were White, urban or who had a serious mental health diagnosis were slightly more likely to initiate or engage in treatment. Third, youth with intellectual and developmental disabilities and substance use disorders were less likely to initiate treatment or remain in treatment for a month, the latter of which was associated with being male and/or non-White (Slayter, 2010c).
Substance Use Disorder Treatment Outcomes in the Disability Community
Treatment outcomes for mental health and substance use disorder services differ greatly for the various segments of the disability community. Looking at the above-mentioned Oregon study of adults with disabilities, substance use disorder treatment appears to be just as successful for adults admitted into treatment as those without disabilities (Krahn et al., 2007). This study notes that disabled adults were just about as likely to remain in treatment, to meet treatment goals and to abstain from using their primary drug of choice during the study period (Krahn et al., 2007). This study tracked individuals for six years, and learned that disabled adults remained in treatment for generally as long as those without disabilities although rates of treatment completion were slightly lower for those meeting treatment goals (Krahn et al., 2007). Among people with outpatient readmission, disabled adults were equally or slightly less likely to be readmitted than those without disabilities (Krahn et al., 2007). Disabled adults self-reported slightly less success on abstaining from their primary drug of choice during the last 30 days prior to discharge (Krahn et al., 2007).
Guidance for Mental Health and Substance Use Disorder Treatment with the Disability Community
While there is no one set of guiding principles for how to provide mental health services or substance use disorder treatment for all disability communities, a central tenet of practice in either type of setting is operational and relates to the need to create the foundation for treatment by eliminating access barriers, whether physical, communication-related or attitudinal (NARIC, 2011; SAMHSA, 2012). There is a range of literature on approaches to practice with specific communities under this larger umbrella. Treatment programs have an ethical and legal responsibility to make treatment as effective as possible (SAMHSA, 2012). One central overarching principle, however, likely relates to the fact that reasons for entering mental health or substance use disorder treatment may not always derive from a person identifying as having a disability or being disabled, a common misconception among social workers who often list disability as a ‘presenting problem’ without asking their clients about this first. Another important factor to consider is that disability communities broadly experience exclusion, stigma, and oppression in the forms of ableism and sanism – with many also experiencing high rates of victimization. All of these factors may be correlated with higher rates of seeking mental health and substance use treatment services.
Disabilities may not always be something that social workers are aware of when beginning work with clients, so screening for disability is a best practice (SAMHSA, 2012). Different screening techniques exist for different populations, such as the d/Deaf community, whose languages may differ from the English or Spanish (or other languages) used in standard written screening tools. More population-specific treatment guidance is available in the Treatment Improvement Protocol (TIP) series developed by the Substance Abuse and Mental Health Administration, such as the TIP 29: Substance Use Disorder Treatment for People with Physical and Cognitive Disabilities. It is important to note that while these TIP documents draw on the evidence base where it is available, much of these documents also draw on anecdotal evidence from clinicians that are not technically data-driven in the classic sense of the term.
Example of Evidence-Based Treatment for Substance Use Disorder Among People with Intellectual and Developmental Disabilities
The following is a discussion of treatment guidance for one particular condition in one particular population, substance use disorders in the population with intellectual and developmental disabilities, a field where we have only a nascent evidence base. To date, only one study has conducted a clinical trial of an intervention focused on this population (Kouimtsidis et al., 2017). Several other non-controlled studies are pointing us in possible directions for treatment, however (Copersino et al., 2022; Kerr et al., 2013). Without evidence-based or evidence-informed treatments to draw on, addiction treatment providers are often at a loss for how to work with this population in their settings, which are often based on cognitive behavioral talk therapy techniques that are not as appropriate for people with intellectual and developmental disabilities (Slayter & Copersino, 2020). One English study focused on young people with intellectual and developmental disabilities who had binge drinking problems (i.e., Kouimtsidis et al., 2017). An extended brief intervention that drew on both motivational interviewing and an unspecified form of modified cognitive behavioral therapy (CBT) was tested against a treatment as usual model and found to reduce harmful drinking (Kouimtsidis et al., 2017). Of cognitive behavioral therapy, Copersino at al. (2022) write:
“Despite a scarcity of research in this area, CBT elements focusing on knowledge and skill attainment “in the here and now” appear to provide developmentally appropriate instructional techniques for people with ID. For example, experiential training methods including role-play are commonly used to empower ID individuals with assertiveness skills, and to build social competency and self-efficacy…Furthermore, these instructional techniques can reinforce valuable target behaviors in people with ID for whom social adaptive functioning deficits are associated with increased risk of AOD problems” (p. 3).
Building on these ideas, these authors conducted a study in the United States which examined the clinical utility of an alcohol and other drug refusal skills intervention designed to be cognitively accessible to adults with IDD (Copersino et al., 2022). Thirty individuals at high risk or in recovery for an addiction disorder in developmental disability services (DDS) community residential and day habilitation settings participated in the 2-week refusal skills group. Curriculum content was drawn from source material on general education about alcohol and other drugs, motivational strategies for recovery, assertiveness training for people with IDD, and their coping strategies for stressful social interactions. The core alcohol and other drug refusal strategies were adapted from The James Stanfield Company Life Facts Series, Substance Abuse and Smart Trust volumes, and NIDA Therapy Manual 1: A Cognitive-Behavioral Approach to Treating Addiction.There was a strong effect for refusal skill acquisition in the group (Copersino et al., 2022).
Three small studies conducted in England and Scotland studied interventions for alcohol use disorders (Forbat 1999; Mendel & Hipkins 2002; Steel & Ritchie 2004). Specifically, two of these studies were focused on increasing clients’ motivation to change their behavior around alcohol use (Mendel & Hipkins 2002; Steel & Ritchie 2004), while the Steel and Ritchie (2004) study sought to help clients increase their knowledge levels about this topic on a one-on-one basis for 12 weeks. Motivational interviewing techniques merged with psychoeducation were used in the Mendel and Hipkins (2002) study using a group approach over three sessions spanning two weeks. While numbers were small in these studies and the studies have been critiqued for their methods, Steel and Ritchie (2004) and Forbat (1999) reported that participants’ knowledge levels rose (with a combined total of six participants). Mendel and Hipkins (2002) reported an increase in readiness to change alcohol-related behavior (although participants were in an alcohol-free secure setting).
Two other studies in Scotland and the United States looked at interventions designed to address both tobacco and alcohol at the same time (i.e., Lindsay et al., 1998; Demers et al., 2000). Lindsay et al.’s (1998) intervention focused on increasing AOD knowledge through small group discussions that ran over a two-month period. People in study showed a significant increase in knowledge levels (compared with a control group) that remained for three months. Demers et al. (2000) worked in a school with children to develop both attitudes and refusal skills to assist with peer pressure over a school year. While there were no statistically significant findings, students in the intervention group achieved higher and more positive outcomes than those in the control group. We hope that this one ‘deep dive’ into the evidence-base for substance use disorder treatment for one population gives you a sense of the need to look specifically at the needs of each segment of the disability communities, instead of thinking of the communities en masse.
Disability-Specific Topics in Mental Health and Substance Use Disorder Treatment Service Settings
In this section, we touch on three of the most controversial topics for members of disability communities who are receiving mental health and substance use disorder treatment services, the need for specialty addiction treatment for the d/Deaf and hard of hearing community, the lack of evidence-based practices for people with intellectual and developmental disabilities, and the use of conservatorships for people with mental health disorders.
Substance Use Disorder Services in the d/Deaf and Hard of Hearing Community
Given the higher prevalence of substance use disorders in the disability community overall, there is a need for specialized screening and assessment tools for d/Deaf and hard of hearing community members. Many social workers are under the impression that all d/Deaf and hard of hearing people use American Sign Language, when some do not. Some people, for example, use Black Sign Language or Puerto Rican Sign Language – or regional variations of all three (Lucas et al., 2020). Not all of these languages share the same signs and not all interpreters speak all of these languages. Translating addiction screening and assessment tools into any of these languages may be challenging as some of the dominant English language terms used do not exist in American Sign Language or the other Sign Languages (e.g., “eye opener” in the CAGE screener). This causes problems for addiction treatment intake workers trying to work with d/Deaf and hard of hearing clients because they may not be gathering accurate data about their alcohol or drug use, among other topics. While researchers and clinicians have partnered to create specialized instruments and programs for the d/Deaf and hard of hearing community, access to these is few and far between (Guthmann et al., 2017). This likely causes disparities in treatment access for d/Deaf and hard of hearing people, as well as issues in both the quality of care received and in the outcomes of that treatment.
Substance use Disorder Treatment for People with Intellectual and Developmental Disabilities
Much scholarship has focused on concerns about substance use disorders in the population with intellectual and developmental disabilities given their higher rate of victimization and use of psychotropic medicines that do not interact well with alcohol and drugs, for example (Degenhardt, 2000). Researchers and activists have documented that stigma and insurance-related factors both contribute to barriers in accessing substance use disorder treatment for this population (Slayter, 2016). Another barrier getting in the way of good quality treatment and positive treatment outcomes for this population is the lack of evidence-based or evidence-informed treatment interventions for people with intellectual and developmental disabilities (McLaughlin et al., 2007). To date, only one study has conducted a clinical trial of interventions focused on the treatment of substance use disorders in this population (i.e., Kouimtsidis et al., 2017). Several other non-controlled studies are pointing us in possible directions (i.e., Copersino et al., 2022; Kerr et al., 2013). Without evidence-based or evidence-informed treatments to draw on, addiction treatment providers are often at a loss for how to work with this population in their settings, which are often based on cognitive behavioral talk therapy techniques that are not as appropriate for people with intellectual and developmental disabilities (Slayter & Copersino, 2020).
The nascent research in this area tells us that hazardous drinking may best be treated through the use of extended brief interventions that draw on both motivational interviewing and a modified form of cognitive behavioral therapy in a group format (Kouimtsidis et al., 2017). This approach was tested against a treatment as usual model and found to reduce harmful drinking in a trial of English adults with intellectual and developmental disabilities (Kouimtsidis et al., 2017). This research is supported by a handful of other non-controlled studies that have examined both motivational interviewing, psychoeducation and other forms of modified cognitive behavioral therapy (including ‘refusal skills’), all in group formats (Kerr et al., 2013).
Conservatorships for People Receiving Mental Health Treatment Services
Conservatorships or guardianships are put in place when a person is deemed to be unable to manage their own financial or personal affairs. They are put into place by a court that appoints either a family member or a professional to act on behalf of what is considered the ‘incapacitated’ person. Pop singer Britney Spears famously made the news when she testified in court about how her legal conservator (now ended) kept her from having children. She had been under a legal conservatorship for many years due to mental health challenges. Specifically, Ms. Spears said:
“I want to be able to get married and have a baby . . . . I wanted to take the (IUD) out so I could start trying to have another baby. But this so-called team won’t let me go to the doctor to take it out because they don’t want me to have children—any more children” (Powell, 2021).
Even with her fame, resources, and privilege, Ms. Spears suffered under a conservatorship in which her relationship with her conservator was strained – leading to unjust situations. A less famous and high-profile case in Massachusetts highlights the impact that conservatorships or guardianships can have for people with mental health challenges. A 32-year-old woman named “Mary Moe” (a pseudonym) became pregnant. Due to her mental health condition, her parents petitioned a state court for guardianship over her so that they could obtain the right to force her to have an abortion. Mary Moe, however, was clear that she very much did not want to have an abortion. Disability legal scholar Robyn Powell documents that “the trial court appointed her parents as co-guardians and authorized that Mary Moe be “coaxed, bribed, or even enticed . . . by ruse” into a hospital for an abortion…Further, the trial judge ordered sua sponte, and without notice, that Mary Moe be sterilized “to avoid this painful situation from recurring in the future” (Powell, 2021, p. 1). While this legal decision was reversed on appeal, Ms. Moe’s situation is an example of the ways in which the disability community faces threats to their reproductive autonomy even within the context of a court system that should be protecting their rights (Powell, 2021). Powell (2021) notes that Britney Spears’s and Mary Moe’s experiences are quite common. Further, she points out that the idea that “people with actual or perceived disabilities—including physical, intellectual, sensory, and psychiatric disabilities—should not have reproductive autonomy, is woven into our nation’s fabric” (p. 1). Reflecting on this further, Powell (2021) points out that these reproductive injustices are even more egregious for disabled people of color and LGBTQ people in disability communities.
So how should social workers involved in a conservatorship case approach their work with disabled clients? Centering the principles of empowerment-oriented disability practice and the disability justice principles would be a good start. Recognizing that the oppression of people with mental health conditions (among other disabilities) vis-a-vis conservatorships in general and regarding reproductive autonomy in particular is deeply woven into our social consciousness, needing to be unwoven.
Policies and Programs Related to Mental Health and Substance Use Disorder Treatment for Disability Communities
Next, we review state and Federal policies and programs relevant to mental health and substance use disorder treatment for disability communities. Care for people with mental health conditions and substance use disorders in the United States is delivered through a complicated network consisting of a mix of public and private organizations as well as public and private funders. Funders can be private companies, such as Google or Apple, or public health insurance programs, such as Medicaid or Medicare, for example. These funders exist at both the federal and state levels in the public sector. Depending on how someone receives their health care coverage, their benefits for mental health or substance use disorder care will look different, as different insurance plans make different decisions about treating and intervening with people with the same diagnoses across those plans.
Many disabled people receive their health insurance coverage through the public sector, specifically via the Medicaid and/or the Medicare programs (Kennedy, 2017). At present, more than 10 million people in the United States are Medicaid beneficiaries as a result of their disability (Medicaid and CHIP Payment and Access Commission, 2022). Some of these community members are known as ‘dual eligibles,’ meaning that they are dually eligible for Medicare and Medicaid, although most of this group (about 6 million) do not have Medicare insurance (Medicaid and CHIP Payment and Access Commission, 2022). Most people think of Medicare as a benefit for people who are elders over the age of 65. Those who are under the age of 65 who receive Medicaid coverage because they are disabled do so as a result of being disabled from birth or due to acquiring a disability. About a third of this population receives Medicaid as a result of their participation in the Supplemental Security Income (SSI) program which is the federal cash assistance program for people who are elderly or disabled who have low income and/or assets (Medicaid and CHIP Payment and Access Commission, 2022). Medicaid is the single largest funder of treatment for mental health conditions and substance use disorder treatments in the United States, which makes this program especially valuable to the disability community (Mental Health America, 2022).
Overall, the primary funds for services for treatment for mental health conditions and substance use disorder treatment comes from the federal government through both Medicare and the Department of Veterans Affairs (also known as the ‘VA’) (Kennedy-Hendricks et al., 2018; Walker et al., 2015). The Medicaid program partners with states and matches Medicaid and CHIP (Children’s Health Insurance Program) dollars at rates of 50-70% varying state to state (Mental Health America, 2022). Additionally, Mental Health Block Grants (MHBG) are provided to states by the federal government (Walker et al., 2015). These allow states to provide community-based mental health services (Mental Health America, 2022). Looking at the state side of the equation, how states structure their services varies significantly across the country because each has freedom in designing and funding its service system, and deciding what is and is not covered (Mental Health America, 2022).
Since the passage of the Affordable Care Act (ACA) in 2010, known colloquially as ‘Obamacare,’ disabled adults who are working age may be more likely to be covered by an insurance plan, and, therefore, may be less likely to face barriers to accessing care Kennedy (2017). Nonetheless, this community still faces significantly high costs for health care that impedes their overall access to services. Additionally, people with mental health conditions appear to have higher chances of not having insurance despite this policy shift (Kaye, 2019). Passage of the ACA was important for the provision of treatment for mental health and substance use disorder treatment because it protected people around coverage for pre-existing conditions and impacted access to services for those specific conditions (Burns & Wolfe, 2016). Under the ACA, coverage of treatment for mental health conditions and substance use disorder services is one of ten ‘essential health benefit’ categories in non-grandfathered individual and small group plans (Burns & Wolfe, 2016).
Of particular note for social workers to be aware of is the Mental Health Parity and Addiction Equity Act (MHPAEA) (Centers for Medicare and Medicaid Services (CMS), 2022). This is a federal law that generally prohibits group health plans and other health insurance plans that provide benefits for mental health treatment or substance use disorder benefits from offering less favorable benefits for that care than for medical and surgical benefits (CMS, 2022). More specifically, social workers need to know that this policy doesn’t require insurers to cover these benefits, a common misconception, only those that choose to include these options (Thalmayer et al., 2017).
Two other policies of special interest to social workers interested in treatment for mental health and substance use disorders relate to the care of children and how the United Nations has weighed in on the rights of people with these conditions worldwide. In 1991, the United Nations passed a resolution known as the “Protection of persons with mental illness and Improvement of mental health care treaty.” This is targeted to improve the rights and opportunities of the disability community in the countries that sign on to the rules and regulations within this treaty. Soon after, in the United States, in 1992, the Children’s and Community Mental Health Services Improvement Act was passed. This created funding for states to create ‘systems of care’ for the support of children with serious emotional disturbances. Systems of care are designed to provide wraparound services to children and their families using a holistic approach, and look different from state to state.
Policy and Practice Implications for Working with Disabled People in this Service System
Across all mental health and substance use disorder treatment service settings, a number of principles are central to the care and support of the disability community vis-a-vis policy and practice implications. These core principles include community inclusion, self-determination, dignity of risk, circles of support and “nothing about us without us” (HIV/AIDS Legal Network, 2008). In this part of the chapter, we discuss how these principles influence mental health and substance use disorder treatment practice where social workers are working with members of the disability community.
We also note the implications for social workers to ensure ethical and socially just policies and practices with disability communities.
At its core, community inclusion is about the location in which a person is receiving services and living. The idea is that wherever and whenever possible, the disability community should be based in the least restrictive environment, ideally in the community. This is due to the extensive history of over-institutionalization that the disability community has experienced – especially disabled people of color.
When we think about community inclusion in the context of mental health and substance use disorder treatment with disabled people, our first thought might be to focus on placement decisions as well as integration with non-disabled people in program activities. Disability communities lift up self-determination as another core principle key to empowerment-oriented disability social work. We may think of this as the process of making something happen in one’s own life – allowing people to make their own choices, set their own goals, solve their own problems and generally make decisions on their own. In the context of mental health treatment, clients should have the right to create their own treatment goals, choose their own treatment modality, and guide their own treatment process in consultation with their clinician. In the context of substance use disorder treatment, and especially in the context of the recovery process, this may relate to how people engage with those in their life who use substances while trying to remain sober. This example connects to the next concept, the dignity of risk.
Many have noted the learning that comes along with engaging in everyday risk – or risk that comes along with greater than everyday risk. This means that social workers need to sit with clients in facing the consequences of their choices in order for the learning to happen, despite the risk of endangerment. In the context of substance use disorder treatment, this might include the risks that accompany a person in recovery socializing with old friends who are still using substances, something that might trigger a relapse. This example leads us to thinking about circles of support, these are the groups of supportive people composed of formal staff, family members, friends or neighbors that encircle the disabled person. As people enter the recovery phase for their mental health or substance use disorder conditions, circles of support are central resources for tracking symptoms and providing feedback and comfort.
Social workers in practice in mental health and addictions settings must embrace the “nothing about us without us” (HIV/AIDS Legal Network, 2008) principle, especially at the goal-setting stage of treatment or intervention work. This phrase came about as part of the disability civil rights movement, and is used to this day. The idea is that no decision should be made without the input of the disabled person themselves weighing in (which links back to self-determination). All too often, clinical goals are set by social workers, without client input. This phrase can be used to help keep social workers centered in their practice to empower their disabled clients.
These core principles align with social workers’ ethical principles and core values. Social workers’ code of ethics obligates them to respect the inherent dignity and worth of individuals and to challenge social injustice (NASW, 2021a). Disability communities are a part of the larger community and members of disability communities face challenges from accessing treatment to engagement in treatment for their mental health and substance use. In fact, social workers have often been perpetrators of oppression and racism against people of color in treatment with overdiagnosis of certain disorders like schizophrenia and underdiagnosis of mood disorders (Elkassem & Murray-Lichtman, 2022; NASW, 2021b). This negatively impacts all disability communities. Social workers must critically examine policies and practices that negatively impact historically oppressed groups within disability communities to make sure that they are not furthering social injustice (Murray-Lichtman et al., 2022). It is easy to recognize historical atrocities in hindsight; it is much harder to recognize them as you take part in their enactment. The first step in ending western society’s long history of mistreatment of those living with mental health and substance use disorders within disability communities begins with collective action and the refusal to continue repeating the patterns of criminalization and underfunded benevolence. Collective action begins at the individual level; therefore, social workers must also critically examine their own biases while promoting social change in disability communities and the broader community (Murray-Lichtman & Elkassem, 2022).
Finally, the historical marginalization of disability communities and those living with mental health and substance use disorders, particularly among group members facing oppression in the larger society, call for social workers to be on the forefront of leading social change which ensures the dignity and worth of the individual. Social workers have an ethical obligation and are uniquely suited to lead in social change with disabilities communities by empowering them and enhancing their abilities to make sure that their voices are heard and their needs are met.
Voices and Perspectives of People Involved in this System
As apparent through our discussions in this chapter, historically to present-day, the voices and perspectives of disabled people with mental health conditions and addictions have not been at the forefront. Instead, persons in positions of power across various roles, organizations, and systems have been making decisions for this community and not with this community.
Returning to the principle of “nothing about us without us” (HIV/AIDS Legal Network, 2008), there are existing and potential ways to have the voices and perspectives of disabled people with mental health conditions and addictions amplified.
Centering the lived experience of disabled people with mental health conditions and who use substances happens through community organizing and events. The Vancouver Area Network of Drug Users (VANDU) is an organization created by and for people who use drugs (VANDU, n.d.). Mad Pride is an event example specific to the mad or mental health community (Dart, n.d.). Art installations, photovoice, digital storytelling, personal narratives and lived experience expertise have been increasingly shared on websites, social media, zines and podcasts. Activists with lived expertise of drug use created a photovoice journal titled “(Re)Visualizing the overdose crisis” (People with Lived Expertise National Working Group, n.d.). An example of a webzine is “Mad in America”, which is intended for people involved in the mental health system (Mad in America, 2022). Crackdown is a podcast created by activists with lived experience of substance use who discuss a range of topics, such as drug policy and the war on drugs (Crackdown, n.d.).
There have been ways that disabled people with mental health conditions and who use drugs have become involved in the behavioral health system, however, these roles have been secondary to the health professionals dominating and dictating these services and programs. An example is increasing the opportunities for disabled people with significant mental health conditions and who use drugs to work in peer support roles, which are well paid and include health benefits, pension contributions, and ongoing training and development (HIV/AIDS Legal Network, 2008; People with Lived Expertise of Drug Use National Working Group et al., 2021). More involvement of disabled people with significant mental health conditions and who use substances as paid and recognized research team members, gives way to inquiry that reflects the needs of these communities (Boucher et al., 2017; Elkhalifa et al., 2020; Jones et al., 2021; Salazar et al., 2021).
Within social work, there are opportunities to increase the admission and retention of disabled people with lived experiences of mental health conditions and addictions as students in social work programs. Disabled people with lived experiences of mental health conditions and addictions should be represented in social work programs, as compensated guest speakers, course facilitators, instructors, faculty, and staff.
Additionally, there is a need to have disabled people with lived experiences of mental health conditions and addictions in leadership positions, as policy makers, administrators, organization executives, and politicians. While disabled people with lived experiences of mental health conditions and addictions have, through some initiatives, been included in policy creation (People with Lived and Living Experience of Drug Use National Working Group, 2021), there are limited members of these communities in leadership roles (People with Lived Expertise of Drug Use National Working Group et al., 2021). We invite anyone involved in the disability and behavioral health systems to consider what change and transformation could result if members of these communities had their voices and perspectives centered, and were represented in meaningful and well compensated roles and leadership positions.
Application of Critical Theoretical Perspectives and Practice Model from Chapter 2
Three critical theoretical perspectives – critical cultural competence, intersectionality, anti-oppressive practice – in conjunction with the planned change process, were integrated by Johnson et al. (2022) to create the model for social work practice with the disability community highlighted in chapter two of this text. We offer considerations for practice with disabled people with mental health conditions and addictions and members of these communities, using this model for social work practice with disability communities by Johnson et al. (2022).
Before even meeting with the person with mental health conditions and addictions that may be referred to or seeking services, a social worker may begin with critical self-reflection and analysis of their own personal and social identities, positionalities, and consider which aspects of themselves contribute to their privilege and oppression, and the marginalization of the people and communities around them. In this pre-engagement stage, a social worker continuously examines how they are implicated in structures and systems of power, and the ramifications of this when working with people and communities that have had their voices and agency taken away or suppressed.
A social worker beginning to work with a disabled person with living experience of mental health conditions and drug use recognizes the scope of their personal and professional knowledge and approaches their practice with humility and openness. The social worker honors and acknowledges the lived experience and expertise of the people they work with and creates time and space for the people they support to share knowledge, inform, and educate them (the social worker) only if or when the person wishes to do so. While the social worker promotes this sharing, they do not rely on people they work with to educate them and, rather, engage in personal and professional development and supervision to address any knowledge gaps they (the social worker) may have.
When seeking to understand and assess the presenting concerns and circumstances of the disabled person with mental health conditions and addictions, the social worker ensures the person’s voice and perspectives are centered. The person is encouraged to define and elaborate on their identities, culture, and communities. The social worker honors the ways the person self-identifies and the language and terminology they use. The social worker also encourages the person to note the informal and formal supports they may have in their life, and recognizes the multiple ways that people connect and cope. If any screening tools or assessments are used or required by the organization where the social worker is employed, they are offered in multiple languages and formats, ensuring accessibility and broad usability by members of various disability communities.
The person accessing services is recognized as knowing what their needs are and what treatment or support may be helpful to them. Remaining true to the principle of “nothing about us without us” (HIV/AIDS Legal Network, 2008), the disabled person with living experience of mental health conditions and substance use guides what or which treatment options or resources would be potentially beneficial. They determine whether disability, mental health, or addictions, or other areas of their life are their main concern(s) and reason(s) for accessing services and support. The social worker addresses their own bias, beliefs, and assumptions about what may be their presenting problem(s) and allows the disabled person with mental health concerns and addictions to lead or co-create treatment plans and goals. The social worker identifies a range of informal and formal community-based programs and supports and informs the person of what is available and accessible where they are. From there, the social worker and disabled person with mental health concerns and addictions work together, continually re-visiting the treatment plans and goals, any programs, services or supports accessed, and their effectiveness for the person.
The social worker recognizes the power dynamics between themselves and the person they are working with, the organization that they are employed with, and the broader community. The social worker also appreciates how ending their work with the person may take many forms, for instance, the person may wish to no longer access treatment services or support, the person may have needs better addressed with another organization, or there may be time-limited or specific service parameters. The social worker addresses these power dynamics and termination considerations with open and collaborative conversations with the disabled person with living experience of mental health conditions and substance use.
During and after their work together, the social worker seeks feedback from the disabled person with mental health conditions and addictions and the social worker adjusts their approach based on the information received. The social worker considers both informal and formal mechanisms of evaluation. The social worker prioritizes what the disabled person with mental health conditions and addictions identifies as progress and success, and how the person describes their experiences in working with the social worker and accessing treatment services or supports. The social worker continuously evaluates their own practice and examines how the treatment services or programs could better serve the person and members of the disability communities.
Jessica Sanchez is a 39-year-old Latina who grew up in the Hunt’s Point neighborhood of the South Bronx. Raised in a loving family of first-generation immigrants from the Dominican Republic, Jessica grew up attending church and volunteering in her local hospital. Diagnosed with learning disabilities related to reading and receptive language at age ten, Jessica always struggled in school, but managed to obtain her high school degree. Soon after obtaining work in a school cafeteria, Jessica became pregnant, starting her life as a mother, with her long-term partner.
In her late 20s, Jessica and her boyfriend went out for dinner one night. As they drove to the movie theater, they were caught in the crossfire of a gang fight, causing their car to crash. Jessica’s partner died of his gunshot wound, and as a result of her injuries she became visually and physically disabled. As she struggled to support her family on one income – and to parent her children alone – she also began to adjust to her reduced vision and physical disability. Jessica’s application was rejected for an accessible apartment as available facilities were not designed to accommodate families. She also struggled to manage the chronic pain from her injuries in a time before doctors were aware of the risks of opioid addiction. After meeting her years later, you learn that soon, Jessica was no longer able to access her pain medication from her doctors and she was not offered alternative pain management treatments by her health care team.
With time, Jessica became dependent on heroin, leading her to earn money as a sex worker, the combination of which led to the removal of her children and a series of arrests. Over the next few years, Jessica was able to enter methadone treatment and regain custody of some of her children. However, she then experienced a relapse – common in substance use recovery. The effects of stress and trauma on Jessica were also apparent. During her last relapse into heroin use, Jessica became infected with both the Human Immunodeficiency Virus (HIV) and Hepatitis C.
When Jessica was most recently arrested for the sale and possession of heroin, you began working together. Although you felt empathy and compassion for her situation, you found yourself wondering how a person with such significant disabilities and difficult life circumstances could parent herchildren. At times, you resented the amount of effort that the child protection authority put into getting her children to Rikers Island jail for family visits, thinking that jail was not a great place for children to see their mother. You kept these feelings to yourself, but you also fought for Jessica to have access to counseling while in jail.
Jessica now faces a ten-year prison sentence. You note that a White woman with a similar criminal history record and set of challenges who was on your colleague’s caseload was recently offered a much shorter sentence. Your job as Jessica’s defense team’s forensic social worker is to present the court with mitigating information about Jessica’s life in order to argue for an equitable sentence that would address the underlying challenges leading to her court involvement. This means that you must find an alternative to incarceration that both provides substance use disorder treatment and can accommodate Jessica’s disabilities, health conditions and two youngest children. Her other children will be placed with relatives – and you think “thank goodness I don’t have to manage that process” and “she’s lucky she has someone to take care of her older children” as finding a program which would accept her and all of her children would be next to impossible.
Turning your attention to your task, you note that an alternative to incarceration program is one that provides treatment instead of incarceration (where little treatment is available anymore due to funding shortages) for the time a person would have been incarcerated. Your goal is to obtain an alternative to incarceration program in lieu of a sentence for a two-year long term residential drug treatment program and 8 years of probation in place of a ten-year sentence. After the standard two weeks that social workers are given to locate alternative placements during the pre-trial phase, you have found that no program would accept Jessica due to her special set of needs. The judge on the case has offered an extension, but says if no program is found soon, he will have to give her the full ten-year sentence even though others without disabilities, medical conditions, and children receive alternatives to incarceration very easily – a clear violation of the Americans with Disabilities Act.
Jessica is despondent and she is losing hope fast. Jessica’s family are very worried about her and also feel overwhelmed with the care of her children, who are acting out due to missing their mother. You work hard on this case, despite your private feelings about Jessica, and after facing many obstacles and many more closed doors due to Jessica’s unique set of characteristics, you obtain a placement for her in lieu of incarceration. This involves many phone calls and meetings with Hawthorne House, a recovery program that agrees to accept Jessica even with all of her health conditions and requirements for childcare. You share all of Jessica’s paperwork with their intake office (after obtaining a consent form from Jessica) and you are told everything is good to go.
On the day before Jessica is set to be released you call the program to re-confirm that they have all they need for her admission the next day. On the day of Jessica’s release, you and her attorney wait for hours at the door where people are released from the jailhouse in order to take her to her alternative to incarceration program. It is almost 4 p.m. by the time Jessica is released, and she has not had her daily methadone dose, so she is starting to feel “dope sick,” but you have to get to the program to check in during office hours, and you hope they will be able to accommodate her with her methadone dose there. As you sit through the intake interview with her at the program, the social worker looks at Jessica’s Medicaid card and says, “this is the wrong kind of Medicaid, we can’t accept her, you’ll have to take her back to jail.” You are not able to convince the program to accept Jessica for the night. By this time, it is after 5 p.m. You drop by the methadone clinic near your office to see if you can get Jessica her methadone as she is experiencing vomiting and diarrhea due to heroin withdrawal, but the clinic is closed. You also know that the courthouse is also closed, leaving you no way to return Jessica to jail. You try taking Jessica to the nearest police station to try to get them to return her to jail but they say they do not have the jurisdiction to do so. You then focus on her health needs again and take her to the emergency room, hoping for assistance with the methadone, but after four hours, are also turned away from there with instructions to visit a methadone clinic in the morning.
You return to your office, where you meet with your supervisor, Jessica, the lawyer you partner with and the executive director, all of whom are stymied about what to do. Finally, without warning, the executive director looks at Jessica and says “I’m giving you $20. Do what you need to do and be back here by 7 a.m. tomorrow morning to return to the courthouse with us in order to explain all of this to the judge.” You think to yourself, “she’s essentially giving her permission to go out and buy some heroin so that she isn’t dope sick anymore with the hope that she’ll show up tomorrow morning. It’s a gamble, but what else are we going to do? We’ve run out of all other options?” You feel sick inside about what is going to happen.
- What are your thoughts about where the situation has been left off?
- Drawing on the NASW Code of Ethics (Links to an external site), how would you manage your personal feelings and professional obligations in addressing this situation?
- How is self-determination and the dignity of risk apparent in this situation? And at what cost?
- Consider the critical theoretical frameworks and practice model discussed in chapter two. How would you apply an intersectional, critical cultural competency, and anti-oppressive perspective when working with Jessica?
- How would you use reflection and reflexion, discussed in chapter two, to work through your ableist feelings about Jessica so that they do not interfere with your practice?
- How might you have worked with Jessica differently, if at all?
- How might this case differ in a rural setting versus an urban one?
- What would your next actions be when working with Jessica?
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