Preventing suicide among transitional-aged youth with disabilities

NSPL-logoSuicide is a major problem among transitional-aged youth, yet little is known about how this phenomenon impacts youth with disabilities. The transition into young adult life is often fraught with a range of developmental, social and emotional challenges, including low self-esteem and emotional distress (Borowsky & Resnick, 1998). Such challenges are faced by all young adults – regardless of the presence of disability.  Existing research suggests that rates of suicidality[1] amongst transitional-age youth (TAY) are high (Centers for Disease Control (CDC), 2011). When considering the population group aged fifteen through twenty-four, it is important to note that suicide is the second leading cause of death and accounts for twenty percent of deaths annually (CDC, 2011).

In two studies examining the cause of death among adolescents, suicide was ranked as first for all adolescents (Debski, Spadafore, Jacob, Poole, & Hixson, 2007) and third for adolescents aged 15-19 (Halifors, Brodish, Khatapoush, Sanchez, Cho & Steckler, 2006). Youth with learning disabilities may be at an even higher level of risk than their general education peers (Bender, Rosenkrans, & Crane, 1999; Huntington and Bender, 1993; McBride & Seigel, 1997) yet little is known about youth with a wider range of disabilities.  Further, little is known about how this phenomenon may play out as youth with disabilities move from adolescence into emerging adulthood as transitional-aged youth (Blakeslee, 2012; Blakeslee, Del Quest, Powers, Powers, Geenen, Nelson, Dalton & McHugh 2013; Lotstein, Kuo, Strickland and Tait, 2010; Mandarino, 2014). Some evidence suggests that ‘typical’ challenges faced in the transitional age period may be exacerbated by the experience of living with a disability (Huntington and Bender, 2001; Jones and Lollar, 2008; Lunsky, Raina and Burge, 2012). Therefore, in order to establish baseline data about a population-based sample of youth with disabilities, the present study explores the prevalence of self-reported, past-year suicidal thoughts, plans or attempts.  Given the lack of existing data on this topic in this population, this is an exploratory study.

 Literature Review: The nascent literature exploring suicidality amongst people with disabilities varies by population studied, and does not employ a consistent or widely generalizable measure of disability. Two population-based study examines a varied group of people with disabilities (Jones and Lollar, 2008; Washington State Department of Health, 2009). Five other studies draw on samples of people with specific types of disabilities, including learning disabilities, physical disabilities, intellectual/developmental disabilities (ID/DD) and a combination of physical disabilities and/or health-related challenges (Hayes and Sloat, 1988; Jones and Lollar, 2008; Lunsky, Raina and Burge, 2012; Merrick, Merrick, Lunsky and Kandel, 2005; Peck, 1985). The latter article is a literature review encompassing reports on self-injurious behaviors. Only two of these studies are specific to youth – not necessarily including TAY – but are included in this literature review given the overall dearth of data on the topic at hand. While two of these studies were conducted with adults with ID/DD, these data assist in establishing baseline information about the likelihood of suicidality among one specific population, calling in turn for consideration of population-specific needs in prevention and intervention given cognitive differences.

Starting with the study that considered a nationally representative sample of youth with disabilities, findings suggest that rates of suicidality amongst people with disabilities are significant, warranting concern. Drawing on a population-based study of 9th-12th graders in the United States, this study operationalized disability as being either physical or related to a special medical condition, resulting in the likelihood of an undercount of youth with disabilities – and a lack of generalizability to youth with different types of disabilities. Jones and Lollar (2008) argue that there is a higher risk of suicidality for youth with disabilities, given that in their sample Students with disabilities were more likely to report seriously considering attempting suicide (33.2% vs. 15.0%; OR = 2.7, p<.05) or to report attempted suicide (19.0% vs. 6.5%; OR = 3.2, p<.05). While the larger body of clinical literature has established a broader operationalization of the concept of suicidality (i.e. from suicidal thinking/ideation and suicide plan-making to actual attempts), this study’s findings likely represent an undercount of suicidality prevalence.

Moving to the second population-based study of a statewide population, the Washington State Department of Health surveyed 10th graders about three markers of suicidality – ideation, planning and attempts.  Study findings suggested that among these second-year high school students with disabilities, 31 percent reported considering suicide, 25% had made a suicide plan and 19% reported actually attempting suicide (Washington State Department of Health, 2009).  The report establishes that rates of suicidality among youth in Washington State are higher than for the nation at large.  While not a peer-reviewed article, this document reports on statewide data related to all youth, including youth with disabilities, vis-à-vis risky behaviors that can relate to suicidality as well. This report evidences the same limitations as the Jones and Lollar article reviewed above vis-à-vis the measurement of both disability and suicidality.

Two studies explored the presentation of suicidality amongst youth with learning disabilities. In 1985, Peck drew on a three-year sample of youth involved in the Los Angeles Suicide Prevention Center, learning that fifty percent of all youth who had presented with suicidality had a learning disability (n=14). A second study, which examined the prevalence of suicidality in four northern Texas counties determined that fourteen percent of all suicide related occurrences in schools involved youth with learning disabilities (Hayes and Sloat, 1988). The authors note that youth with learning disabilities only comprised five percent of the overall school population, suggesting a higher likelihood of suicidality among youth with learning disabilities.

The first of two studies exploring suicidality amongst adults with ID/DD drew on a clinical sample of 751 Canadian citizens with ID/DD in order to establish baseline demographic and clinical knowledge (Lunsky, Raina and Burge, 2012). Self-reported data about people in crisis who either threatened (n=39) or attempted (n=28) suicide were presented. Findings suggest that while there were many similarities between people who threatened and people who attempted suicide, the latter group were more likely to be younger and to have a significant history of emergency room service usage. Looking at the group overall, findings suggested differences by gender (female), functional status (higher functioning) and self-harm history with respect to the odds of threatening or attempting suicide. This study’s findings related to gender are surprising as they are strikingly different from the ways in which suicidality is noted in the population without disabilities, in which females are at higher risk of making suicide threats, but males are more at risk of making an actual suicide attempt (American Foundation for Suicide Prevention, 2015). This finding may suggest one way in which disability-specific suicide prevention efforts could be targeted. Although this study was limited in that it did not triangulate data collection beyond individual self-report (given acquiescence bias, for example, among people with ID/DD), it is one of the few disability-specific studies on suicide available for developing a clinical evidence-base and the relevant limitations to the data source were examined carefully by the authors.

In the second study that focused on adults with ID/DD, a literature review, the authors examine twenty-one peer-reviewed articles related to suicidality and people with ID/DD, including one specific to people with Down Syndrome (Merrick, Merrick, Lunsky and Kandel, 2005). The authors concur that existing literature establishes data about presentation of suicidality by age (i.e. youth vs. adult) and setting (i.e. community settings vs. inpatient or residential settings). Three important clinical points are gleaned from this literature review.  First, perhaps the most important point made in this article is the idea that in the past, clinicians considered ID/DD as a “buffer” against the potential for suicidality, an assumption that is not supported by the (albeit small) evidence base.  Second, it was determined that sadness and depression are likely to indicate the potential for future suicidality and should be taken seriously in clinical assessments.  Third, this article makes the connection between existing research about the increased prevalence of depression amongst people with ID/DD, and points out the potential for diagnostic overshadowing as well as the need for specific assessment and intervention mechanisms for clinicians.  The latter point suggests the need for a study on how existing best practices for suicide assessment, prevention and intervention can be modified for specific populations.

In summary, despite the fact that existing data suggest suicidality to be a concern for people with disabilities, in some cases including a higher risk than the population-at-large, little is known about suicidality in a population-based sample. Further, the existing literature base leaves us not only in need of additional population-based data about suicide amongst all people with disabilities, but certainly about TAY with disabilities as well.

 Prevention programming: Suicide prevention programming should target transitional aged youth – but also their families and the agencies where both are served and supported. The Suicide Prevention Resource Center has designed a Best Practices Registry (BPR) that lists a range of evidence-based programs, that is, interventions that have undergone rigorous evaluation and demonstrated positive outcomes (http://www.sprc.org/bpr). Prevention approaches could take a micro/family approach or a macro/community approach. One micro/family level intervention, Let’s Talk Gatekeeper Training program provides suicide prevention training to foster parents and other adults who care for youth. Key gatekeepers are “people who regularly come into contact with individuals or families in distress” per the Surgeon General’s National Strategy for Suicide Prevention (United States Department of Health and Human Services (2001).  Gatekeeper training has been identified as one of a number of promising suicide prevention strategies.  This training addresses myths and facts about suicide, risk and protective factors for suicide, information about the warning signs of suicide, thoughts on how to communicate about suicide with at-risk youth, approaches to restricting the means for an attempt and guidance on how to respond to a suicide crisis. On the other hand, an example of a macro/community level intervention is the Model Adolescent Suicide Prevention Program (MASPP), which could be implemented in a particular community. The MASPP is a public health-oriented suicidal-behavior prevention and intervention program that targets high rates of suicide among adolescents and young adults. The program’s goals relate to the reduced incidence of adolescent suicides and suicide attempts through community education about suicide.  As a community-wide initiative, the MASPP incorporates universal, selective, and indicated interventions and emphasizes community involvement and ownership.  While designed with the specific cultural needs of an American Indian community in mind, slight modifications could be made for non American Indian communities.

 Screening in disability service centers: These data provide evidence in support of the need for suicide prevention efforts to be implemented across the settings in which transitional-aged youth are seen in relation to their disability status. These settings could include schools or training programs for those between 18 and 21 years old, independent living centers, one stop centers. Vocational rehabilitation centers and government offices such as Social Security.  Individual human service workers in these categories could also include transition planners, life skills coaches, job coaches or parent-to-parent trainers.  While many of the professionals and peer workers employed in such settings are not mental health counselors, training for ‘gatekeepers’ on screening measures such as the “Question, Persuade, Refer” (QPR) intervention could be conducted. This widely used approach offers online trainings for individuals and organizations alike (QPR International, 2015).  This screening could be used if a young person is threatening to hurt or kill themselves, expresses interest in looking for ways to kill themselves (such as seeking access to pills, weapons or other means) or if a person is talking or writing about death, dying or suicide, the clinician should conduct a mental health evaluation with the goal of developing precautions that can immediately be put into place in order to ensure the safety, stability and security of the youth.  For workers in the disability services arenas to develop their comfort level with screening for suicide appears to be a necessity for this population. Suicide prevention and intervention work with this population can also take place with mental health clinicians and social workers who work with transitional-aged youth with disabilities in community-based mental health centers and other clinics should be sure to screen for potential suicidality through the use of standard suicide screening measures (McManama O’Brien, Singer, LeCloux, Duarté-Vélez and Spirito, 2014).

Disability culture-specific screening and intervention tools: Despite the number of suicide screening, assessment and intervention tools that are available to clinicians, it is important to note that there is no disability-specific listing in the Suicide Prevention Resource Center’s best-practices registry.  While for some populations with disabilities, a generic, age-appropriate best practice would be theoretically fine, this is a concern for other populations with specific cultural needs.  For example, substance abuse screening approaches have had to be modified for people who are deaf or hard-of-hearing and who use American Sign Language (ASL) as a result of differences in clinical terminology between English and ASL (Guthmann and Moore, 2007). Similar concerns might exist for populations with cognitive disabilities.

 Social media campaign: When we consider the combined advances in communication technology and the increase in wide-scale access to such technologies, it is clear to see that it is reshaping the manner in which individuals relate to one other (Muller, 2011). The proliferation of the use of the Internet caused a heretofore-unprecedented level of online connection and engagement. Virtual locations function to shrink distances associated with geographical locations, and it is now possible to create connections between individuals in a manner not seen through more traditional means of communication. It appears that online communities are quickly becoming the rule rather than the exception for youth vis-à-vis social engagement.  Given these realities, in recent years, prevention efforts have drawn on the power and potential of social media outlets such as YouTube, Twitter and Facebook.  One such campaign, the “It Gets Better” YouTube campaign, was designed to support young people who identified as Lesbian, Gay, Bisexual or Transgender (LGBT)  (Muller, 2011; Webster, 2013).  It was created in 2010 by American columnist Dan Savage and his partner Terry following a spate of youth suicides that had resulted from bullying.  While no studies on the effectiveness of this campaign on reducing suicide attempts were located at the time of this writing, it is fair to say that this home grown YouTube campaign was uniquely able to both raise awareness about suicidality among LGBT youth and was able to create an international dialogue on the topic of bullying and suicide in this population.  The potential to explore such approaches to suicide prevention amongst transitional aged youth with disabilities remains unexplored – but could be considered by disability-related organizations and advocates.

References:

  1. American Foundation for Suicide Prevention, (2015). Suicide Rates by Sex. Retrieved on March 11, 2015 at: https://www.afsp.org/understanding-suicide/facts-and-figures.
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  4. Blakeslee, Jennifer E.; Del Quest, A.; Powers, Jennifer; Powers, Laurie E.; Geenen, Sarah; Nelson, May; Dalton, Lawrence D.; McHugh, Elizabeth (2013). Reaching everyone: Promoting the inclusion of youth with disabilities in evaluating foster care outcomes. Children & Youth Services Review. 35(11),1801-1808.
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  9. Huntington, D. D., & Bender, W. N. (1993). Adolescents with Learning Disabilities at Risk? Emotional Well-Being, Depression, Suicide. Journal Of Learning Disabilities, 26(3)
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  13. Mandarino, Kelly. (2014). Transitional-Age Youths: Barriers to Accessing Adult Mental Health Services and the Changing Definition of Adolescence. Journal of Human Behavior in the Social Environment. 24(4), 462-474. 13p. DOI: 10.1080/10911359.2013.835760.
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  16. Merrick, J., Merrick, E., Lunsky, Y., & Kandel, I. (2005). Suicide behavior in persons with intellectual disability. The Scientific World Journal, 5, 729-35.
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  21. United States Department of Health and Human Services (2001). National Strategy for Suicide Prevention: Goals and Objectives for Action. Rockville, MD.
  22. Wachter, C. A., & Bouck, E. C. (2008). Suicide and Students With High-Incidence Disabilities. Teaching Exceptional Children, 41(1), 66-72.
  23. Washington State Department of Social and Health Services, Division of Alcohol and Substance Abuse. (2009). Washington State’s Plan for Youth Suicide Prevention. Accessed 10/30/2013: http://www.doh.wa.gov/Portals/1/Documents/Pubs/160-024_YouthWithDisabilitiesRiskFactorsForSubstanceAbuse.pdf
  24. Webster Jr., C. R. (2013). It Gets Better Project. Journal Of The American Academy Of Child & Adolescent Psychiatry, 52(6), 657-659.

[1] The use of the clinical term “suicidality” refers to the presence of suicidal thought (ideation), suicide plan making or suicide attempt.

 

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