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. 2023 Sep 18;55(1):e13001. doi: 10.1111/sltb.13001

Paved with good intentions: How our systems intersect to create health disparities for multiply marginalized youth

Anna Maria Ros 1,2,✉, Claire A Coyne 1,2, Stephanie Clarke 3
PMCID: PMC13542467  PMID: 37718961

Abstract

Background

Youth who hold multiply marginalized identities often experience barriers in accessing care following psychiatric hospitalization

Methodology

The following commentary piece shares a case amalgamation from a multidisciplinary gender clinic in a tertiary care children's hospital which illustrates the myriad of ways that our current mental healthcare systems fail to connect youth efficiently and effectively to the evidence‐based, culturally relevant, and affirming care that they require, particularly youth experiencing overlapping systems of discrimination and disadvantage.

Conclusions

This piece highlights the inaccessibility of dialectical behavior therapy for multiply marginalized youth, and outlines suggestions for improving access to high‐quality care for minoritized youth engaging in suicidal behavior.

Keywords: dialectical behavior therapy, evidence‐based therapy, suicidal behavior

CASE AMALGAMATION

A transfeminine, Latinx young person (age 17) with a history of self‐harm presented to a multidisciplinary gender clinic in a large Midwestern city for gender‐affirming care. During readiness assessment, it was identified that she had risk factors including significant suicidal ideation, contagion (a family member and a close friend died by suicide recently), and substance use. She received treatment for gender dysphoria in the multidisciplinary clinic and was diagnosed with generalized anxiety disorder (GAD), major depressive disorder (MDD), possible post‐traumatic stress disorder, and substance use disorder. She was connected to community‐based outpatient providers who accepted her insurance (Medicaid), but she instead elected to continue seeing mental health providers embedded in the gender clinic, as she found the environment to be supportive and affirming. During this period, she struggled with pervasive emotion dysregulation across settings and contexts. She had intense and long‐lasting emotions, and often struggled interpersonally with peers and family, often engaging in ineffective and impulsive communication. Patterns of invalidation with her family of origin extended beyond invalidation regarding gender identity, and clinicians noted that her family of origin often responded inconsistently to her expressions of distress, vacillating between extremes of shaming and neglecting her. During her 2 years connected with providers in the gender program, she experienced the losses of multiple peers by suicide. Clinicians noted increased substance use, and difficulty with skill generalization across contexts.

This patient was followed as she transitioned to an alternate therapeutic school following her friend's death. She spent time in partial hospitalization and intensive outpatient programming (IOP) after this loss. She stepped down to outpatient cognitive behavioral therapy (CBT), and after a week she attempted suicide and spent weeks in the hospital, requiring extensive medical care. At this point, after multiple suicide attempts, this young person was then identified as needing dialectical behavior therapy (DBT), and the team began to identify providers of comprehensive DBT in the area. She stated a preference for a BIPOC‐identifying, queer provider due to her history of traumatic invalidation by providers and associated distrust. Further, she experienced transportation barriers living in an area of the city with inconsistent bus lines and due to chronic poor internet connectivity, she required in‐person therapy within city limits, along a subway line. None of the DBT programs in the city would accept her form of public insurance, but when investigated, one program had a waitlist for pro bono sliding scale, and another organization was willing to complete a single‐case agreement. After months of back and forth, the insurance company offered a single‐case agreement with reimbursement that was deemed too low to be worthwhile to the organization, and the single‐case agreement was refused. The young person was eventually connected to the comprehensive DBT program that offered pro bono sliding scale treatment after several months on a waitlist, she remained connected to medical and mental health providers embedded in the gender clinic throughout this time.

BARRIERS TO CONNECTING TO APPROPRIATE CARE

There were significant barriers to the identification of this young person's need for a comprehensive DBT program. When she first presented to clinic, her pervasive emotional dysregulation was understood to be the consequence of exposure to repeated traumas. While anxiety and depression were readily identified and treated, providers were resistant to “labeling” her with borderline personality disorder (BPD), even as evidence grew that this diagnostic label fit. The treatment team was able to maintain this young person's connection to affirming, evidence‐based care for her gender dysphoria, and knew that her insurance would limit options for mental health treatment in the community to target her chronic suicidal ideation. Experiences with discrimination, stigma, and clinicians lacking training in gender‐affirming care are well‐documented barriers for transgender individuals accessing healthcare (e.g., Kcomt et al., 2020). Providers were not confident the patient would find an affirming community‐based therapist and worried about lapses in care if the patient was referred to providers with long wait lists.

The team's reluctance to “label” this young person with BPD delayed the identification of DBT as a necessary treatment, as providers were not aware that this treatment was effective for adolescent suicidal behavior in youth without an existing diagnosis of BPD. This misunderstanding is important to understand in the context of the current evidence base for youth at high risk of suicide: even if this young person did not meet criteria for BPD, DBT would still be the evidence‐based treatment of choice given their history of suicidal behavior as the only well‐established treatment for suicidal behavior in youth (McCauley et al., 2018). With multiple targets of intervention (substance use, self‐harm, suicidal behavior) the team understood that weekly individual outpatient therapy would be insufficient. The treatment team chose to extend their limits (e.g., offering outpatient appointments up to twice a week) to address the patient's healthcare needs, while understanding the treatment frequency was unsustainable in the long term within this pediatric specialty care clinic setting, and comprehensive DBT would be a necessary next step.

Once it was identified that this adolescent required DBT, providers experienced several barriers connecting her to care. DBT is a complex, multicomponent cognitive‐behavioral treatment (including individual psychotherapy, a multifamily skills group, telephone coaching, and a consult team for therapists) and is the only well‐established, evidence‐based treatment for self‐harming adolescents at high risk for suicide (McCauley et al., 2018; Mehlum et al., 2014, 2016). Unfortunately, this young person experienced systemic financial and insurance barriers which limited her access to evidence‐based care, and in this case, her insurance did not cover any comprehensive DBT programming. In general, outpatient mental health providers are not incentivized to provide treatments like DBT, which are intensive and complex, by insurance companies. Despite evidence that DBT reduces costs when compared to treatment as usual and decreases long‐term care utilization in high service‐utilizing individuals, few insurance companies offer in‐network DBT services (Krawitz & Miga, 2017). In this case, this adolescent's state‐based insurance offered a handful of PHPs and IOPs, none of which had integrated DBT skills, let alone comprehensive DBT programming. She had also experienced prior discrimination, invalidation and microaggressions at some of the available options for higher levels of care, which were harmful and validly contributed to feelings of distrust. Despite being in a large, well‐resourced city, her preferences for a BIPOC, queer therapist further narrowed the pool of available clinicians with necessary expertise.

Ultimately, decisions about care for this young person hinged upon coverage through her health insurance, which should never be the most salient factor driving decision‐making for patient care. However, even if money were no object, few providers in the Midwestern United States have opportunities to train in DBT, which results in a regional dearth of providers able to meet this young person's needs. In this example, finding a provider with such specialized training, who skillfully employed affirmative care and cultural competency with a multigenerational Latinx immigrant family felt like finding a needle in a haystack. Additionally, given the transitional age of this young person, by the time providers referred the patient for DBT programming, she would have qualified for the adult modality. Adolescent DBT integrates a multifamily skills component including middle path skills which would have benefitted both patient and parent. The timing of her transition from adolescent to adult care over this crisis period was also made difficult because of a cultural paradigm shift: this patient was legally regarded as an adult at 18 years old, yet she struggled to navigate effectively and independently connecting to in network DBT programming with her insurance provider.

MULTIPLE SYSTEMS OF CHANGE REQUIRED

To improve the landscape of available culturally relevant, affirmative evidence‐based care for multiply marginalized youth, stakeholders have several potential targets. First, all graduate training programs have a duty to teach students about SGM affirming care, as well as culturally relevant care. Optimally, providers would be trained to assess and adapt evidence‐based mental treatment to address psychological distress associated with gender‐related stigma. A lack of adequately trained providers (e.g., providers who pathologize sexual and gender minority (SGM) identities or avoid talking about gender and sexuality all together), compounded by patient fears of stigma and discrimination continue to constitute barriers to accessing evidence‐based, effective mental health care for SGM youth (James et al., 2016; Oransky et al., 2019).

Similarly, all graduate training programs have an obligation to, at a minimum, help students identify when an adolescent requires DBT, and education should include what the evidence‐based treatment is based on the adolescent's presentation (i.e., comprehensive DBT vs. DBT‐informed treatment). Like other treatments, DBT has struggled to remain financially accessible for those interested in becoming trained and has only recently begun to explicitly address how its application can be changed to be more culturally informed. Consequently, offering more affordable training opportunities and continuing to work on making DBT welcoming and sensitive to all minoritized groups is essential. It would additionally behoove the field to offer avenues for trainees to gain exposure to DBT with the goal of increasing the number of trained therapists. One effective way of doing this might be integrating graduate student trainees as co‐leaders of existing DBT skills groups during their training. This would involve training and preparing co‐leaders to provide effective skills coaching and the provision of ongoing clinical supervision. Trainees could additionally shadow a consultation group and would have the opportunity for more meaningful exposure to DBT as a comprehensive, intensive treatment. These training opportunities, in addition to current and future efforts to continue to diversify the field of psychology, may expand the workforce to meet the needs of minoritized youth with preferences to work with therapists with similar lived experiences.

Providers also need education regarding distinctions between DBT informed treatment and comprehensive DBT. Comprehensive DBT consists of four components: individual psychotherapy using DBT principles and protocols, a multifamily skills group, telephone coaching, and a consult team for therapists. Many therapists say they “do DBT” when they may integrate any number of DBT skills in their therapy. While these techniques may be beneficial for clients, this is not comprehensive DBT. This distinction is incredibly important because for an issue as serious as suicide, patients require evidence‐based treatment as it was intended to be delivered. DBT informed treatment can be a wonderful supplement to other modalities, but therapists need to be clear on what they are, and are not, providing, and understand what is indicated for whom. One significant challenge to increasing provider education is the field's reticence to define what “DBT informed treatment” means. Defining what DBT‐informed treatment is and disseminating effective treatment like DBT STEPS–A (a curriculum that adopts DBT skills to be taught as a class) would increase provider exposure to evidence‐based DBT‐informed treatment. This may increase provider literacy and familiarity with the various applications of DBT‐informed treatment and might allow for increased access to evidence‐based care.

Next, it will be important to continue to disseminate comprehensive DBT to increase its reach. The intensive training structure of DBT makes it challenging to scale this intervention and creates a valley between most generalist providers and the few providers with expertise in this treatment. One goal to improve systems' capacity to treat these patients would be increasing provider education and literacy on when comprehensive DBT is required; at very least, this is when an adolescent has engaged in suicidal behavior and/or has a pattern of non‐suicidal self‐injury (NSSI; deliberately inflicting damage, pain or both to bodily tissue without suicidal intent; Nock & Favazza, 2009). While we do not presently have the trained workforce to offer comprehensive DBT for all adolescents engaging in consistent NSSI and/or suicide attempts, it is important that clinicians consider, recommend, and advocate for this modality of treatment for youth because this is currently the only well‐established treatment for this presentation.

DBT is by no means a panacea, and authors do not want to overstate the evidence as such. More research is needed to strengthen the external validity of DBT in minoritized samples. Although many adaptations for the structure of DBT exist, few adaptations have been made to make DBT more culturally relevant (Pierson et al., 2022). The existing RCTS for DBT have reasonable inclusion rates for ethnic minority groups when taken together, but representation for Black youth in particular is underwhelming (McCauley et al., 2018). The evidence base for Latinx youth is somewhat stronger, a recent study on the trajectories of non‐response in DBT found Latinx ethnicity to be a moderator of treatment response in adolescent DBT (Berk et al., 2022); however, a significant limitation of this study is that all Latinx participants identified as female, restricting generalizability. The current literature on the efficacy of DBT in sexual and gender minority samples is also insufficient, as few RCTs published on DBT asked about sexual orientation (11.1%) or gender identity (5.6%) of participants, which limits the ability to interpret DBT's efficacy for these populations (Harned et al., 2022; Polo et al., 2022). While researchers and clinicians have created promising adaptations for affirmative DBT skills training, this research continues to be in the nascent stages and requires replication and rigorous evaluation (Cohen et al., 2021). Additionally, current RCTs regarding DBT include predominantly female samples, future work is needed to determine whether findings truly generalize to male‐identified people (McCauley et al., 2018). In order to increase the external validity of the current evidence base, researchers have an obligation to recruit accurately representative samples in future RCTs.

In addition to increasing the evidence base for and dissemination of comprehensive DBT, it is important that healthcare systems use available avenues to access single‐case agreements for underinsured patients. Until specialty care like comprehensive DBT is made available to all patients who require it regardless of insurance type, hospitals should prioritize structural supports like case managers or care coordinators to navigate insurance negotiations to access single‐case agreements for comprehensive DBT when underinsured patients are admitted with a history of repeated suicide attempts. This aspect of discharge planning is essential and individual providers often lack the time and expertise needed to negotiate with insurance companies. Not only would investment in care coordination increase the quality of care and safety of patients, but it would also allow for centralized documentation of denied single‐case agreements and allow for hospital administration to negotiate coverage of care on a larger scale. In any case, documentation of denied single‐case agreements could be beneficial in the event of legal action against insurance companies that consistently deny access to lifesaving care.

Practice guidelines for mental health care with SGM youth recommend adapting EBTs to improve engagement and clinical outcomes by addressing sexual and gender minority stressors and developing skills to cope with consequences of discrimination and stigma (American Psychological Association, 2015). However, many clinicians lack the training and experience required to make necessary adaptations to provide culturally competent mental health care for SGM youth. Clinicians delivering evidence‐based treatments to TGD youth must understand how to integrate minority stress considerations into treatment plans, but the existing literature is largely descriptive studies of clinical adaptations (Coyne et al., 2020). One preliminary effectiveness study of a modular manualized group‐based cognitive behavioral intervention addressing gender minority stressors among TGD youth (AFFIRM) demonstrated a reduction in reported depression. Though the study showed promise for group‐based adaptations of cognitive behavioral treatment, the severity of posttreatment depression symptoms remained high and other common symptoms in TGD youth (e.g., anxiety, suicidal ideation) were not assessed (Craig et al., 2021).

Finally, advocacy is a necessary next step to reducing risk for multiply minoritized youth. Psychologists should be advocating against dehumanizing policies that uphold structural racism and anti‐SGM sentiment, which we know increase suicide risk for minoritized folks (Sheftall et al., 2022). In addition, clinicians should advocate for legal recourse when single‐case agreements are functionally inaccessible. Unfortunately, negotiating single‐case agreements for those on public insurance is a state‐by‐state process, which complicates intervention for those states where single‐case agreements are less than accessible. Another way that psychologists may advocate for resources would be through APA. An organization like APA might consider making a public statement to recognize DBT as a distinct level of care and inviting insurance companies to offer reimbursements that incentivize providers to offer this intensive treatment (Koons et al., 2013). Finally, advocating for a single‐payer healthcare system might be the most effective way to ensure universal access to lifesaving care like DBT. Despite significant health insurance reforms between 2012 and 2017, barriers to equitable and accessible mental health services persist for Black and Latinx youth (Rodgers et al., 2022) A single‐payer system would eliminate the need for time and resource intensive single‐case agreements and allow clinicians to refocus their energy on providing treatment rather than connecting to care.

STATEMENT OF NEED AND CALL TO ACTION

Race is a social construct that affects the lives of racially minoritized youth, including Black, Native American, and Latinx youth (Shih et al., 2019). Since 2003, Black youth have experienced a significant upward trend in suicide which necessitates increased assessment, intervention, and advocacy (Riley et al., 2021; Sheftall et al., 2022). This risk is compounded for Black sexual minority youth, who report bullying victimization and suicidality at a rate of two to six times higher than heterosexual counterparts (Mueller et al., 2015). Youth who identify as both Black and sexual & gender minority (SGM) are adversely impacted by structural racism and anti‐SGM oppression, which is associated with perceived burdensomeness, thwarted belongingness, self‐harm, and suicide attempts for Black, queer youth (English et al., 2022). For Latinx and Native Youth, having multiple marginalized identities similarly compounds suicide risk. One recent study found that for SGM youth, cumulative minority stress universally predicts greater suicide risk (Green et al., 2022); relatedly, a recent study on the inclusion of minoritized youth in DBT randomized controlled trials (RCTs) found that sexual minority youth were overrepresented in every RCT that measured participant sexual orientation, suggesting that sexual minority youth might particularly benefit from DBT as a treatment designed to decrease behaviors that arise in the context of chronic environmental invalidation (Harned et al., 2022). Despite a concerning absence of transgender and gender diverse (TGD) youth in DBT RCTs (Harned et al., 2022), a recent qualitative study of youth and provider perspectives highlights the utility and relevance of DBT for acute and chronic stressors experienced by TGD youth, and recommends a number of potential adaptations for treatment modifications for youth experiencing gender dysphoria (Tilley et al., 2022). Many SGM youth face chronic invalidation, discrimination, rejection and victimization within their families and communities, and particularly in the larger context of recent nationwide anti‐SGM rhetoric and policy, DBT is a particularly relevant, necessary treatment for SGM youth.

For many multiply minoritized young people in the United States, being underinsured is yet another source of marginalization and harm. To meet the needs of these multiply marginalized young people, the field must move toward a more robust dissemination of evidence‐based interventions, increased advocacy for legal response when treatments are inaccessible, and holding insurance companies accountable for providing necessary treatment to all. In the case we reviewed for this article, the young person would continue to be without appropriate care if it had not been for the availability of pro bono options. The current system serves to further marginalize those already experiencing minoritized and marginalized identities and fails to deliver existing effective treatments to those in need, and until significant changes are made, youth with intersecting marginalized identities will continue to suffer the consequences.

CONFLICT OF INTEREST STATEMENT

We have no conflicts of interest to disclose.

ACKNOWLEDGMENTS

We would like to thank the transgender and gender diverse youth engaged in care in the Gender Development Program at Lurie Children's Hospital. We would also like to thank all Comprehensive DBT providers that offer pro bono and sliding scale services.

DATA AVAILABILITY STATEMENT

Data sharing not applicable to this article as no datasets were generated or analyzed for the current study. This study is a case amalgamation and commentary, and no data were collected, as such it was not submitted for review to any board.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

Data sharing not applicable to this article as no datasets were generated or analyzed for the current study. This study is a case amalgamation and commentary, and no data were collected, as such it was not submitted for review to any board.

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