A wise man once said that at times of sweeping transformation, “all that is solid melts into air.” As the delivery system responds to changes driven by the transition to Medicaid managed care and, ultimately, value-based payment, many are concerned about meeting the needs of historically marginalized populations, including LGBTQ individuals who are living with serious mental illness. During this time of upheaval and flux, will their needs be taken into account – or lost by the wayside?
Although our delivery systems are calibrated to broadly serve those whose needs lie within the middle of the bell curve, it’s the populations at the edges of the curve that are a critical focus for reform initiatives—those whose utilization is either very high or those whose lack of access to care demands focused attention. Indeed, it is within these “edges of the edges” that some of the highest need sub-populations lie. As we all work together to bend the cost curve and meet the triple aim, concentrating on the widest part of the bell curve – the needs of the “average” recipient of services – may seem like an adequate way to proceed. But the system is already designed for this imaginary average client – and it isn’t working. Many people who aren’t “average” in one way or another are falling through the cracks, and contributing to the kind of poor outcomes and high costs that we are all trying to avoid, while being unable to access the kind of affirming, client centered care that we are all trying to provide.
What do we know about people who fall through the cracks? Their needs don’t get met, so they experience negative outcomes, relapses, decompensations—all with no support. Then they fall back on high-cost emergency services, such as hospitalization.
LGBTQ Populations with Behavioral Health Needs are Especially Vulnerable and Underserved
The urgency of ensuring appropriate access to “LGBTQ welcoming” behavioral health care is only exacerbated following the nation’s most deadly shooting, which targeted people who are LGBTQ. Among American adults, 3.8% identify as gay or lesbian i , 0.7% as bisexual i, and 0.3% as transgender ii. That’s a total of 4.8% of the general population. The US Surgeon General estimates that 2.6% of all adults in the United States are experiencing serious mental illness at any given time. By combining these rates and looking at the population of New York City and State iii, we can estimate that well over eight thousand LGBTQ adults are living with serious mental illness in New York City alone. However, just under that number are being served in New York State as a whole. Here we have solid data because the 2013 New York State Office of Mental Health (OMH) Patient Characteristics Survey included, for the first time, questions about recipients’ sexual orientation and gender identity. Of the 144,464 adults surveyed, all of whom were clients of the NYS OMH system, a total of 7,226 (5%) identified as lesbian, gay, or bisexual, and 0.3% identified themselves as transgender. These groundbreaking, first-in-the-nation results clearly demonstrate that LGBTQ people receive services in the public mental health system at rates equal to or higher than national prevalence estimates for the overall population, but still well below the range of the actual level of need, according to likely prevalence.
The following LGBTQ health disparities were identified by the NYC Community Health Survey (CHS) iv.
- Higher depression rates; 28% of gay and lesbian people had been depressed, nearly twice as many as the 14.25% rate reported by heterosexual people
- Lower rates of health insurance coverage; uninsured rates are 20.6% for lesbian and gay individuals, 23.5% for bisexual and 32.9% transgender people versus a 14.9% for those who are heterosexual
- Lack of access to primary care; 28.3% of lesbian and gay people did not have a primary care physician compared to 17.4% of heterosexuals
- Higher rates of homelessness; 42% of homeless youth are estimated to be LGBTQ v
- Domestic violence; 4.5% of lesbian and gay men report fearing violence from an intimate partner contrasted to 2.3% of heterosexuals
- Significantly higher rates of alcohol and drug use among LGBTQ youth populations than heterosexual youth populations by as much as 190% vi
According to the Federal Bureau of Investigation, LGBTQ people are more likely to be targeted for hate crime than any other group in the United States. Disparities related to experiences of stigma, discrimination, bullying, and violence are further exacerbated for LGBTQ people who have serious mental illness and/or substance use disorders. These compounded effects are especially acute among LGBTQ youth, those who are transgender, and Black and Hispanic LGBTQ people. Indeed, untreated behavioral health conditions are especially dangerous among those who are transgender—one study in the U.S. found that 41% of transgender people reported attempting suicide, a rate that is 25 times higher than the general population. As well, in 2010, the NYS Department of Health commissioned The Empire State Pride Agenda Foundation to conduct the Statewide LGBTQ Health and Human Services Needs Assessment in New York State. xi While 13% of LGBTQ people reported being the victim of homophobic or transphobic physical or sexual assault, these rates are far higher for those who are LGBTQ and Black (19.3%) or Latino (20%)—rates that are twice as high as the 10.9% rate of transphobic physical and sexual assault reported among white transgender people. The Needs Assessment also found that 14% of over 3,000 respondents are currently or formerly homeless, and rates are higher among the transgender and gender nonconforming populations.
3.7% of transgendered people are currently homeless and 29.6% are formerly homeless – rates three times the level of non-transgendered people. As noted above, barriers to behavioral health care faced by LGBTQ populations are exacerbated in communities of color where general stigma around mental health is compounded by LGBTQ stigma. For instance, one Brooklyn focus group with older African Caribbean immigrants was noted to have agreed that they would rather have a relative die than come out as gay.
Accessible and Culturally Competent Behavioral Health Care is Hard for LGBTQ People to Find
While it is true that LGBTQ people, in general, seek care more often than their non-LGBTQ counterparts viii, they are more likely to leave care prematurely, due to a lack of support and affirmation. When LGBTQ individuals are not engaged in needed care, they are then at risk for negative outcomes, decompensation, and the need for costly emergency services such as emergency room visits and psychiatric hospitalization. Forty two percent of nearly 3,000 LGBTQ people surveyed for the Needs Assessment indicated that community fear and dislike of LGBTQ people was a problem for them in accessing healthcare; 39.8% reported that there are “not enough professionals who are adequately trained and competent to deliver healthcare to LGBTQ people.” ix Since homosexuality was considered a mental health disorder until 1973 by the American Psychiatric Association, it is no surprise that LGBTQ individuals do not always feel comfort within the general behavioral health system.
Lack of access to mental health care was cited by 35.3% of LGBTQ respondents to the Needs Assessment and 39.2% identified a lack of support groups.xi For those who do seek care, fear of culturally incompetent care leads many LGBTQ individuals to avoid disclosing their sexual orientation. Quoted in the Assessment report, one staff member at an LGBTQ-specific mental health treatment center noted that its clinic was established because services were not available elsewhere, “our people are released into an outpatient care system that is completely unprepared to deal with their needs. They’re harassed. They go off their meds, spiral down, and 8-10 weeks they’re back into the hospital. To break that cycle is what we do. The question I always get is, why does it have to be two systems? Why can’t LGBTQ people with mental illness just go and get treated in these programs?” x
Cultural Competence is Cost Containment
Rainbow Heights Club (a project of the Heights-Hill Mental Health Service South Beach Psychiatric Center Community Advisory Board, Inc.) is the only state funded mental health program for LGBTQ individuals living with serious mental illness in NYS. Rainbow Heights has a fifteen-year track record of preventing hospitalization for 90% of its 650 LGBTQ clients who have serious mental illness every year by providing LGBTQ-affirming peer support. Performance outcomes like these demonstrate that, especially with marginalized and hard to reach populations, low-cost peer delivered services are a good investment, and an excellent means of containing costs for providers able to appropriately address the needs faced by a specific population. But effective care is not a luxury; it’s not a form of being nice to a handful of misfit clients. It means moving our agencies forward to meet the needs of all the clients that we serve. When we fail clients—when we don’t provide the support, affirmation, safety, and inclusion that they were hoping to find—they fall out of care and lose more than can be quantified. In addition, we lose their potential contributions within the community and the revenue and performance outcomes that they might have provided if they had remained in care. Everybody loses when clients don’t receive the support and acceptance they need and deserve.
Creating a Welcoming Clinic
Identifying LGBTQ Clients: The Institute of Medicine (IOM, 2011), the Healthy People 2020 strategy xi and the Joint Commission on Accreditation of healthcare organizations (JCAHO) (2011) all advise that sexual orientation and gender identity (SOGI) questions be asked in clinical settings, and documented in electronic health records, to combat the dangers of LGBTQ invisibility. Such data can be a vital tool to detect differences and disparities in diagnoses and treatment outcomes, access to services, utilization rates, etc. Governor Cuomo has launched a statewide initiative xii regarding LGBTQ data collection that includes OMH and many other government bureaus. The NYS Office of Mental Health, Bureau of Cultural Competency provides an on-line training on “Collecting Sexual Orientation & Gender Identity Information on OMH Patient Admissions” and “Asking Patients about Sexual and Gender Identity,” xiii and The Fenway Institute offers recommended language for survey questions or interviews about sexual orientation and gender identity. At a minimum, recommended intake questions, include: “Do you think of yourself as: Lesbian, Gay or homosexual, straight or heterosexual, bisexual, something else, or don’t know” and “What was your gender assignment at birth? Male, female, transgender or other. xiv If a client asks, “But why are you asking ME this?” you can respond by saying, “The Office of Mental Health wants us to ask all clients these questions, so that we can understand and meet the needs of everybody that we serve. If there’s anything about you or your situation or background that you think I should be aware of, please let me know. I don’t want to sit here making assumptions about you.” xvi
Cultural Competence Training: Providers must train staff—all staff, including reception area and intake staff—to promote a welcoming environment for LGBTQ populations. Cultural Competence training should include common definitions, candid discussion of common barriers, and exploration regarding strategies that promote comfort and safety for LGBTQ populations. Six years ago, a statewide survey of NYS organizations offering an array of behavioral health, human services, and primary care found that 86% of organizations reported serving LGBTQ populations, while only 3% mandated LGBTQ-specific training and 61% reported that no training is offered regarding LGBTQ-related concerns, 82% did not offer training to educate employees or managers on how better to include LGBTQ employees, and 53% reported that their organization did not need to have training on sensitizing the workplace for LGBTQ employees in the future xv Now, however, cultural competency training that focuses on LGBTQ populations is readily available. OMH trainings available on line via the Bureau of Cultural Competence xvi include:
- Building a Culturally Competent LGBTQ Program
- Asking Questions that Welcome LGBTQ Consumers into Care
- Introduction to Therapeutic Work with Transgender Clients
- Lesbian, Gay, Bisexual, Transgender (LGBTQ) People Living with Serious Mental Illness
- Promoting Healthy LGBTQ POC Communities
- From Toddlers to Teens: Clinical and Therapeutic Work with Transgender Children and Adolescents
- Working with LGBTQ Children, Adolescents and Families
- An Overview of Best Practices in Transgender Affirmative Mental Health Care
Other resources are also available. For instance, The Joint Commission developed a 100-page LGBTQ field guide xvii which includes checklists and suggestions that providers can use to assess their LGBTQ cultural competency. To further support and guide provider efforts, the NYS Delivery System Reform Incentive Payment (DSRIP) initiatives being implemented by 25 Performing Provider Systems throughout NYS were each required to submit a Cultural Competency and Health Literacy Strategy Plan that describes a workforce training and community engagement plan that will ensure that cultural and linguistic needs will be addressed throughout the communities they serve. These plans are intended to address cultural competence and health literacy needs that have been assessed for each region, and LGBTQ populations were identified for special attention due to the compounded impact of stigma and access barriers related to additional cultural factors. Training materials and resources related to the healthcare needs of LGBTQ and other niche populations of focus should soon be available for providers, as DSRIP’s regional training plans are implemented. If not, you can ask for it!
Although future cultural competency standards and a “proven curriculum by a qualified provider” have been recommended, no present standard has been developed to address LGBTQ needs specifically. However, ongoing efforts to improve care are underway, including the work of The New York State Office of Mental Health Statewide Multicultural Advisory Committee, which has paid close attention to the issue of LGBTQ affirming services and oversaw the pioneering SO/GI data collection that resulted in the ground-breaking data from the 2013 and 2015 Patient Characteristics Surveys. The NYS Office of Mental Health can also be credited for dedicating its most recent Newsletter to “Meeting the Mental Health of LGBTQ New Yorkers.” xviii In addition, in New York City, The LGBT Citywide Committee on Mental Health, Substance Abuse, and Developmental Disability Services provides a monthly open forum for stakeholders to discuss challenges and opportunities in the provision of affirming care.
Strategies for Effective LGBTQ Care: Staff of the Rainbow Heights Club do some very simple things that help clients feel safe and ordinary. This approach contributes to the kind of strong performance outcomes that they see year after year. Consider implementing the following, and instituting them as agency wide policies and practices:
- Clearly state that your agency’s policy is to serve all clients regardless of their sexual orientation or gender identity or expression. Make sure staff and clients are aware of this. Posting this policy in a visible location supports staff in addressing discriminatory behaviors: They can point at the policy and say, “That’s why we don’t talk to one another that way here.”
- Ask clients what they would like to be called – and then call them that. A name and pronoun go-round happens at the beginning of every group and community meeting at Rainbow Heights Club. This helps members and staff to remind each other of what they’d like to be called, and it’s especially helpful if the person has a gender identity that for many reasons they may not be choosing to show in a way that other people can see. Many people, especially people living with mental illness, are not safe in their neighborhoods if they express their gender identities. But they still get a lot of benefit and support from being called what they like to be called – just as everybody else does.
- When asking about someone’s relationship status, don’t say, if someone appears to be female, “Are you married or do you have a boyfriend?” That question might sound innocuous, but it’s loaded with assumptions that might make it harder for a client to let us know what’s really going on. Instead, ask “Are you in a relationship right now? Would you like to be in a relationship? With what kind of person?”
- In response to any disclosure about sexual orientation or gender identity, it’s very helpful and reassuring to say, “I’m glad you told me that.” If someone mentions a same-sex partner, follow up with the same kind of questions you’d ask any other client about their partner or spouse: “Where did you meet her? What’s she like?” Again, these seemingly simple questions are loaded with important messages: they show that you think the relationship is real and is an appropriate topic for your work together, and you want to know more about it.
Delivery System Reform Presents Challenges and Opportunities
The transition to managed care and ultimately to value based payment incents achievement of quality indicators and is also driving improvements in data collection and sharing, quality improvement, and care management that will support targeted interventions customized for niche populations. As providers identify client sexual orientation and cultural and linguistic needs within their service area and begin to more effectively engage those who are LGBTQ, the flexibility for new recovery oriented interventions will create new access points for LGBTQ populations able to refer their peers, as well as new opportunities for peer support specialists who are LGBTQ to bring their own lived experience to reach and retain new clients who are LGBTQ.
At the same time, planning grants for Certified Community Behavioral Health Centers (CCBHCs) are presently underway in 24 states, including New York, New Jersey and Connecticut. Behavioral health providers selected to become CCBHCs are preparing to pilot a federal Medicaid service model financed by a prospective payment system that is based on the cost of care delivery. This financing structure will support care coordination and a full array of behavioral health treatment services for adults and children, including mental health and substance use disorder treatment, peer support services, and recovery-oriented assistance to address social determinants such as housing, education, and vocational goals. The model is intended to be highly responsive to population health needs within a targeted service area. Care coordination is the linchpin, and CCBHCs emphasize data collection and customized evidence-based interventions, available from the CCBHC and its partnerships with Designated Collaborating Organizations (DCO), to appropriately address the needs of specific populations based on the socio-economic, geographic, cultural, linguistic, and environmental factors that uniquely impact the community. This “future state” vision of a comprehensive behavioral health continuum able to target customized services based on individual needs is poised for implementation in 2017, if New York is one of eight states selected for the federal pilot.
Regardless of the drivers, the system is pulling in the same direction, toward data informed care delivery that is culturally competent and calibrated to meet the needs of all persons. Demographic data related to sexual orientation and other factors will enable providers to effectively calibrate outreach, as well as specialized interventions. This effort will support improved cross-system awareness of, and expertise in, maximizing the efficiency of long-term management for chronic psychiatric conditions, including the benefits of peer based, strengths focused recovery support – not just for the recipients of care and their quality of life, but for the bottom line.
No matter how small the niche population, over utilization of high cost care and barriers to access demand that local needs be identified and supported by customized interventions at the provider level. Although the design of more highly customized approaches to evidence-based care that is responsive to person-centered needs may be taking a back seat to the establishment of the infrastructure and systems necessary for the State’s transition from volume to value at the present time, the systemic components offer rich resources and opportunities for statewide improvements.
What’s the point of all this effort? Shirelle, a tall, transgender woman, put it eloquently: “I’m a transgender member of Rainbow Heights Club – one of the many – and I don’t stand out here. I just blend in.” Blending in, belonging, being a part of the community just like anybody else – if we can give LGBTQ clients that experience, then the real work can begin. We must demonstrate, for all of the clients we serve, that we are willing and able to help them meet their own goals, in their own way, and we must ensure that they feel safe, and welcome – that they belong—in our agencies and our communities. The LGBTQ affirming services that Rainbow Heights Club provides help clients to stay out of the hospital, increase treatment adherence, increase hope and self-esteem and social support, and improve relationships with families and care providers. Establishment of new Medicaid service delivery options, such as Health Homes and Home and Community Based Services (HCBS) will promote opportunities for more customized recovery supports by providers of all types. In the value-based payment environment of the near-term, all providers will want to take steps to do the same.
i Ranji U., Beamesderfer A., Kates J., & Salganicoff A.: Health and Access to Care and Coverage for Lesbian, Gay, Bisexual, and Transgender Individuals in the U.S., 2014; http://kff.org/report-section/health-and-access-to-care-and-coverage-for-LGBTQ-individuals-in-the-u-s-the-LGBTQ-community/.
ii Gates G.: How Many People Are Lesbian, Gay, Bisexual, and Transgender? The Williams Institute, UCLA School of Law, Apr. 2011. http://www3.law.ucla.edu/williamsinstitute/pdf/ How-many-people-are-LGBTQ-Final.pdf (accessed Aug. 1, 2011).
iii Romero A.P., et al.: Census Snapshot: United States. The Williams Institute, UCLA School of Law, Dec. 2007. http://www.law.ucla.edu/williamsinstitute/publications/USCensusSnapshot.pdf (accessed Sep. 1, 2011).
iv New York City Department of Health and Mental Hygiene. New York City Community Health Survey, 2010. ICPSR35013-v1. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2014-04-17. http://doi.org/10.3886/ICPSR35013.v1
v Ray, N. (2006). Lesbian, gay, bisexual and transgender youth: An epidemic of homelessness. New York, NY: National Gay and Lesbian Task Force Policy Institute and the National Coalition for the Homeless. Retrieved from http://www.thetaskforce.org/downloads/reports/reports/HomelessYouth_ExecutiveSummary.pdf
vi Marshal, Michael P. et al. “Sexual Orientation and Adolescent Substance Use: A Meta-Analysis and Methodological Review.” Addiction (Abingdon, England)103.4 (2008): 546–556. PMC. Web. 13 June 2016.
vii Park H. and I. Mykhyalyshyn (2016, June 16). L.G.B.T. People Are More Likely to Be Targets of Hate Crimes Than Any Other Minority Group. The New York Times. Retrieved from http://www.nytimes.com/interactive/2016/06/16/us/hate-crimes-against-lgbt.html.
viii NYC DOHMH local government plan, 2008
ix Frazer, M. Somjen. (2009) LGBT Health and Human Services Needs in New York State. Empire State Pride Agenda Foundation: Albany, NY. URL. Access Date.
x U.S. Department of Health and Human Services., 2008
xi Healthy People 2020. (n.d.). www.healthypeople.gov/
xii NYS Interagency LGBTQ Task Force. Standing Up for All New Yorkers. www.governor.ny.gov/sites/governor.ny.gov/files/archive/governor_files/StandingUpForAllNYers.pdf
xiii Warren, B. E. Collecting Sexual Orientation and Gender Identity Information on the OMH Patient Admissions Form. Lecture presented in New York. Retrieved from www.omh.ny.gov/omhweb/cultural_competence/videos/understanding/collecting.html
xiv The Fenway Institute and the Center for American Progress. Asking Patients Questions about Sexual Orientation and Gender Identity in Clinical Settings December 2013. http://thefenwayinstitute.org/wp-content/uploads/COM228_SOGI_CHARN_WhitePaper.pdf
xv LGBTQ Health in Government. (2010). Retrieved from http://www.hunter.cuny.edu/communications/repository/files/blueprint final complete.pdf
xvi Cultural Competence- Health Reform. Retrieved from http://www.omh.ny.gov/omhweb/cultural_competence/health_reform.html
xvii The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. Oak Brook, IL: Joint Commission Resources, 2010.
xviii New York State Office of Mental Health. (June, 2016). Meeting the Mental Health needs of LGBTQ New Yorkers. Retrieved: www.omh.ny.gov/omhweb/resources/newsltr/2016/june-2016.pdf.