In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder AUGUST 2021 Susan Anthony; and Rebecca Catterson and Suzanne Campanella, NORC at the University of Chicago Contents About the Authors 3Introduction Susan Anthony is a health care editor and 3 About the Study Participants writer. Family Members and Close Friends of People with Dual This report is based on research conducted Diagnoses by Rebecca Catterson, MPH, senior research 5 Background - A Fragmented System director, and Suzanne Campanella, MPH, research director with NORC at the University 6 Findings - How People with Dual Diagnoses of Chicago. Experience Care Navigating the System and Coordination of Care NORC at the University of Chicago is an Interpersonal Relationships and Stigma objective nonpartisan research institution that Race/Ethnicity delivers reliable data and rigorous analysis to guide critical programmatic, business, and 22 Despite All the Challenges, Most Are Improving policy decisions. 23 Conclusion - Moving Toward Integrated Care About the Foundation 24 Appendices The California Health Care Foundation is A. How Structural Separation of Mental Illness and dedicated to advancing meaningful, measur- SUD Treatment Confounds Provider Organizations able improvements in the way the health care and Providers delivery system provides care to the people of B. Demographics of All Interviewees California, particularly those with low incomes and those whose needs are not well served 28 Endnotes by the status quo. We work to ensure that people have access to the care they need, when they need it, at a price they can afford. CHCF informs policymakers and industry leaders, invests in ideas and innovations, and connects with changemakers to create a more responsive, patient-centered health care system. DESIGN BY DANA KAY HERRICK California Health Care Foundation www.chcf.org 2 Introduction For the 8.9 million American adults - about 500,000 Dual Diagnosis Is Common Californians - with a dual diagnosis of mental illness Co-occurrence is not unusual. Among people with and substance use disorder (SUD), it can be difficult to substance use disorder (SUD), approximately one- receive the fully coordinated and effective care they third have a co-occurring mental health disorder.* want and need. For people with low incomes, the bar- Similarly, about 20% of people with a severe mental health disorder will also develop an SUD during riers can be even higher. Many of the obstacles stem their lifetime. Most people with a severe mental from the structural separation of mental health and illness die at least 20 years earlier than would be SUD services into two different funding and delivery expected, usually of preventable physical condi- systems, but there are cultural, financial, and profes- tions. Unfortunately, only 7.4% of people with dual sional factors as well. A frequent result for patients is diagnoses receive treatment for both disorders, unnecessary suffering from their illnesses, while fami- accessing treatment at lower rates than those with- out these comorbidities.† lies and friends experience continuing stress as they search for effective help for their loved one. * Wendy Holt, Substance Use in California: A Look at Addiction and Treatment, California Health Care Foundation, October 2018. † Mary Ann Priester et al., "Treatment Access Barriers and To understand the experiences of Californians with Disparities Among Individuals with Co-occurring Mental Health and Substance Use Disorders: An Integrative Literature Review," dual diagnoses and the families and friends who Journal of Substance Abuse Treatment 61 (Feb. 1, 2016): 47–59. support them, CHCF funded a study by social sci- ence research organization NORC at the University of Chicago. The researchers identified and interviewed people with in-depth personal or professional knowl- edge about dual diagnosis. Through these interviews, About the Study the project aimed to shed light on the real-life obsta- Participants cles to treatment and good outcomes and to identify The 54 people with dual diagnoses interviewed (adults current practices that are working well. 18 to 64) were recruited through treatment programs and all live in California households with incomes NORC interviewed 93 people, including: under 200% of the federal poverty level, or $25,760 $ 54 people with dual diagnoses and currently for a single person in 2021.3 They came from across in treatment for mental illness, SUD, or both the state and represented a mix of age, racial, ethnic, and geographic backgrounds. See Table 1 on the fol- $ Nine loved ones - either family members or lowing page for a demographic breakdown. Five of close friends - of people with dual diagnoses the 54 interviews were conducted in Spanish.4 $ 20 direct care providers, five provider administra- tors, and five subject matter experts1 During the initial screening process, participants were asked to name their primary mental health diagnosis; The firsthand experiences of people with dual diagno- over half (55%) cited depression. However, in subse- ses and their family members and close friends are the quent interviews, they described a broader range of central focus of this report. Interviews with direct care diagnoses including anxiety, bipolar disorder, schizo- providers, provider administrators, and subject mat- phrenia, and post-traumatic stress disorder. Nearly ter experts provide context and highlight structural half (47%) cited alcohol use as problematic, and many and cultural impediments to care for people with dual also said they had used methamphetamines (30%), diagnoses.2 (See Appendix A for additional comments marijuana, heroin, cocaine, and other drugs. from this group.) In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 3 TABLE 1. INTERVIEWEES WITH DUAL DIAGNOSES, DEMOGRAPHICS While there was no "typical" person with dual diagno- ses, many interviewees reported that they had: N = 54 NUMBER PERCENTAGE $ Sought behavioral health (a term that includes Race mental illness and SUD) treatment through multiple $ African American / Black 10 19% avenues and settings over time; some had experi- enced involuntary hospitalizations. $ Non-Hispanic White 24 44% $ Experienced homelessness at some point, and $ Latinx/Hispanic 15 29% many were currently living in shelters or supportive $ Native American 2 4% housing units or had lived in these settings in the past. $ Other 3 6% $ Experienced incarceration, where some received Sex limited behavioral health treatment; some had pro- bation officers or courts order them to behavioral $ Male 38 70% health treatment as a condition of their release or $ Female 16 30% as part of a diversion program. $ Lostjobs or been unable to find employment due Language in Which Interview Was Conducted to their illness, criminal background, or because of $ English 49 91% stigma or transportation difficulties. $ Spanish 5 9% $ Lostthe support of or access to family members at some point (although some reported having main- Age tained such support). 18 to 29 5 9% $ Experienced trauma at some time, or many times, $ $ 30 to 39 19 35% in their lives, including abuse, domestic violence, rape, and other traumatic experiences. $ 40 to 49 13 24% $ Parents,siblings, or other family members who had $ 50 to 59 13 24% suffered from mental health conditions or SUD. $ 60 to 65 4 7% Limitations of the participant group include an inabil- ity to interview as many Spanish-speaking people CHCF Region with limited English proficiency as desired, despite $ Northern & Sierra 17 31% significant efforts in recruiting. (See Appendix B for detail.) By design, people of Asian descent were $ San Joaquin 1 2% intentionally not recruited due to unique aspects of $ Other Southern California 3 6% stigma in many Asian cultures documented in the literature.5 Additionally, because participants were $ Los Angeles 10 19% largely recruited from treatment providers, it is likely that interviewees included a disproportionately high $ Inland Empire 18 33% number of people who had experienced integrated $ Bay Area 5 9% or coordinated care compared to the universe of Californians with dual diagnoses. California Health Care Foundation www.chcf.org 4 Family Members and Close Friends Background - of People with Dual Diagnoses Among the nine family members and close friends of A Fragmented System people with dual diagnoses interviewed, eight were The health care environment that people with dual women. These participants included five mothers, two diagnoses and their families and friends confront is sisters, one father, and one friend/partner. Most lived fundamentally two systems with separate data and separately from their loved one with dual diagnoses. financing mechanisms, charting requirements, and They supported their loved ones' recovery efforts by privacy regulations. In some cases, providers in differ- helping them navigate the health care system, provid- ent settings within the same health care organization ing shelter, looking after children, and/or serving as have different electronic health record (EHR) systems, a sounding board. Among family members or close with providers on the SUD side unable to access infor- friends whose loved ones have severe mental illness mation from the mental health side and vice versa. and SUD, some have conservatorship and assist with A severe complicating factor is that the system that activities of daily living, manage financials, and pro- delivers physical health care is not typically integrated vide food and housing. with either of the other systems - in effect presenting those seeking care with three separate environments, all with their own requirements and protocols. Direct Care Providers, Provider Administrators, and Subject Matter Such structural segregation frustrates providers' ability Experts to care for people with dual diagnoses (see details in Among the 20 direct care providers who participated Appendix A), but there are educational and cultural in interviews, a majority (13) were mental health pro- obstacles as well. Experts pointed out that mental viders, including psychiatrists, psychologists, marriage health and SUD providers' training, experience, and and family therapists, and licensed clinical social work- opinions about the role of medication in treatment ers. The providers reported a high prevalence of dual are often different, which can make it difficult for pro- diagnosis among their clients, most of whom were viders and their organizations to coordinate care or uninsured or had Medi-Cal coverage. All but two to treat people for both conditions. Cross-training of providers who worked with adult populations said providers in both mental illness and SUD care is not the prevalence of dual diagnosis among their clients common, and even when cross-training opportunities is greater than 50%. However, some believed there are available, some providers prefer to treat people were high levels of undiagnosed mental health issues, only in the specialty in which they are primarily trained. which would bring the rate of dual diagnosis within their client population closer to 80% to 90%. The impact of such segmentation on people with dual diagnoses cannot be overstated. It begins as soon as The provider administrators interviewed were trained they enter treatment and their presenting symptoms as either mental health or SUD providers and also are diagnosed. The interviews conducted for this served in an administrative role at their organiza- report showed that this primary diagnosis determines tions. The subject matter experts included people not only where people enter care but also how they in academia, state government, and consulting who self-identify moving forward. This first diagnosis per- provided their knowledge of the issues surrounding meates their experiences with the health care system treatment for people with dual diagnoses. throughout their lives. Most of the interviewees with dual diagnoses focused their descriptions of care on a single diagnosis and its treatment; the research- ers had to probe intensively to uncover experiences related to the other diagnosis. Providers and subject In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 5 matter experts concurred that the system's need for a primary diagnosis to bill for care was an administrative Findings - How People barrier that often prevented providers from treating a with Dual Diagnoses secondary diagnosis. Experience Care The central focus of this report is on the experiences The primary diagnosis determines not only of the people with dual diagnoses and of the family where people enter care, but also how they members and friends closest to them. The findings from the project are organized in the following areas self-identify moving forward. It permeates of impact on access and outcomes for people with their experiences with the health care dual diagnoses: system throughout their lives. $ Navigating the system and coordination of care $ Social determinants of health: employment, The impact of structural and cultural separation housing, criminal justice involvement between systems can be especially severe for people who require inpatient care for either mental illness or $ Interpersonal relationships, stigma, and SUD. Inpatient programs seldom address both prob- race/ethnicity lems or coordinate care after discharge. Those in inpatient settings for SUD are often required to stop taking their psychiatric medications, putting them in Navigating the System and danger of recurrence of symptoms. Similarly, patients Coordination of Care placed on a 72-hour psychiatric hold (5150) may Motivations for seeking treatment vary. Interviewees not receive any SUD support or postdischarge care cited a number of factors that motivated them to seek coordination for SUD treatment. For both groups of treatment. Some described how a hospitalization, inpatients, the results of single-focus protocols can incarceration, estrangement from friends and fam- have unnecessary and painful consequences. ily, or losing custody of a child was a wake-up call. Others said that having someone guide them through One provider described the impact on people with the system or having a role model motivated them to a dual diagnosis as a "vicious cycle" wherein people address their SUD and/or mental health issues. Some with serious mental illness stop taking their prescrip- people said they decided to change after experienc- tion medications to comply with SUD treatment rules, ing shame, denial, and not feeling supported by loved causing their mental health to deteriorate to the point ones or providers. where they cannot productively participate in their SUD treatment. This often leads to relapse and having to start over again. "You have to want to find the help because a lot of people don't. For me, in the past, I entered into a program just because my ex-woman would tell me, 'You are really bad. You need help.' Or the family would tell me, 'You have to enter into treatment.' California Health Care Foundation www.chcf.org 6 Loved ones of people with dual diagnoses described "From where I am now, I look back to see why their difficulties in finding the right services. One it didn't do me any good. It was because I mother recounted how she attended Alcoholics always did it for another person. I never did Anonymous (AA) and Narcotics Anonymous (NA) meetings to determine if they were a good fit for her it for myself." son. Another interviewee reported that the internet - 45-year-old Latinx man with dual diagnoses, became her main information source to research treat- Pasadena (interview conducted in Spanish) ment centers for her loved one, but said she was often unable to find options that were both affordable and People often don't know how to get care. An issue convenient. commonly faced by people with dual diagnoses and their loved ones was not having information about Distance from services is a serious complication treatment and service options. For people without for many people, especially in rural areas. A county housing, it is especially difficult. Various interviewees behavioral health director and a peer specialist in dif- felt that navigating the system to find available and ferent parts of the state each noted that there are no affordable care can be arduous. psychiatric wards or mental health facilities in certain remote parts of their counties. In each case, patients Some described challenges understanding Medi-Cal drive, or are driven by county staff, up to five hours, and completing program applications. For example, one-way, to the nearest psychiatric facility. an interviewee stated that they would have benefited from having more support to better understand admin- istrative processes. Another said they had a problem "I've been Googling, trying to find something "finding the person that knows how to answer the that's local. I was looking all day yesterday question." A few interviewees said they got help navigating behavioral health systems from a variety and the day before, when they took him of providers including drug and alcohol counselors, to the hospital. There's not really much out social workers, and therapists. One recounted how their therapist quickly referred them to an SUD clinic there. I've tried calling 211. And you know, when they told the therapist they were not sure how they basically say, 'Look on the Internet.' to access SUD treatment. Others described relying on There are places if you've got $10,000 a on the emergency system. One person explained that the main way they seek help when they are having a month. But I haven't got $10,000." mental health or SUD problem is to call 911, and then - Loved one of a person with dual diagnoses the operator refers them to the appropriate agency. In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 7 Care is better when mental health and SUD provid- prevention. An interviewee noted that the classes he ers work together. Interviews with patients as well as took in his dual diagnosis program helped him better providers indicated that integrated care - concurrent grasp how his depression impacts his methamphet- treatment of SUD and mental illness at the same place amine use: "For me it's if I start sleeping a lot, I need to by a multidisciplinary team - is the most effective start knowing I'm going into depression. Depression model. When a single setting is not possible, inter- had me using. So there are different ways that you viewees observed that providers communicating and start using in your mind before you even really pick coordinating treatment from different locations can up on it. It teaches me my triggers on what could set also be effective in treating dual diagnoses. it off, or what's setting it off and I don't even know." "The counselor would hold one-on-ones "As soon as it became a problem, we reached for an hour. They always asked, 'How do out to the person's addiction counselor you feel? What things have happened to let them know that he'd fallen off the during the week? What goals do you have? wagon." The person had just graduated What do you want to work more on? On and was no longer going to be tested as your triggers? On your coping?' We did regularly. "The counselor was really great exercises on how, when the thought to and reached out to him right away, got him drink or consume comes to mind, how to re-signed up in some classes, and I think deflect and turn that around . . . coping that they set up a system where they were mechanisms. I have learned a lot. I am very going to be checking in every week for grateful for that." several weeks. They were really quick and - 45-year-old Latinx man in an integrated care willing to jump on board with more thorough treatment center receiving support for his alcohol and drug use and bipolar disorder, support." Pasadena (interview conducted in Spanish) - Housing program manager / social worker at a mental health nonprofit, Napa County Several people described how their mental health and substance use providers across hospital inpatient, resi- In interviews, providers described how they individu- dential treatment programs, and outpatient settings ally took steps to coordinate care. For example, a effectively communicated with each other to facilitate mental health provider described collaborating on care. One person expressed gratitude for this coordi- case management with a client's drug and alcohol nation because it relieved him from having to repeat counselor through several phone conversations and himself over and over again. by jointly attending a family meeting to discuss family dynamics and dysfunction. A therapist noted that she Some people said their dual diagnosis treatment pro- uses a confidential message and data-sharing system grams gave them important tools and knowledge to send information back and forth with alcohol and in both small classroom settings and individual ses- drug services personnel. sions with counselors. They reported gaining a better understanding of triggers, coping skills, and relapse California Health Care Foundation www.chcf.org 8 Several interviewees gave examples of how their Still, one provider reported that the loosening of the organization implemented multidisciplinary case 42 CFR Part 2 regulation at the onset of the COVID-19 management services and shared data with other pandemic has proved helpful in coordinating patients' providers. treatment with providers who do not treat SUD.7 A few mental health providers described processes Treatment for mental illness or SUD can lead for reaching out to a client's SUD case manager or to addressing other health care needs. Multiple counselor when the client is in distress. One clinic people with dual diagnoses described getting basic developed protocols to ensure that mental health cli- preventive care like vaccines or physicals for the first nicians assess patients for dual diagnoses and have time in years - or finally receiving medication or the ability to add a secondary diagnosis code in the treatment for chronic conditions - when their SUD EHR system. or mental health providers helped connect them to care for other health needs. For example, one person reported that their mental health and SUD providers "Most treatment centers really minimize the connected them to needed cancer treatment. A per- son with diabetes, substance use, and bipolar disorder dual-diagnosis aspect. They'll advertise described how the coordination between their mental dual-diagnosis, and they'll have therapists health and primary care providers led to the discov- there that you have the option of seeing. ery that a mental health medication was affecting their blood sugar levels. Notably, across all interviews, only But that's about the extent of the dual- a small number of people described unmet physical diagnosis treatment. Everything else is just health needs. about addiction." - 35-year-old White man with dual diagnoses, "Before I came [to a dual diagnosis treatment Riverside County program] I wasn't going to the doctor, so A barrier to coordination are privacy laws, such as the it's working out better because now I have a 42 CFR Part 2 regulation, which require written patient primary care doctor . . . which means I won't consent for SUD information to be shared with other providers.6 Multiple providers noted how it can be just be popping up in the emergency room cumbersome for providers and clients when release-of- for things. I have carpal tunnel in my arm information forms differ across organizations, resulting that I just found out I'll be getting surgery in multiple rounds of paperwork. One provider also noted how people with dual diagnoses sometimes are for. It's been paining me for two years. No distrustful of sharing their SUD information with men- one's figured it out because I've never had tal health providers and refuse to permit data sharing. This means their providers are limited in the amount the same doctor." and type of information they can share and receive - 45-year-old Black woman with dual diagnoses, from other providers, and coordination of patient care San Mateo County becomes more challenging. In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 9 Medi-Cal coverage is perceived to be good, but A few people said they lost interest in residential treat- access problems are serious. All the interviewees ment for SUD after waiting multiple weeks or months with dual diagnoses are covered by Medi-Cal, and for a bed. One person was actively seeking residential most expressed satisfaction with the program. Several treatment while experiencing homelessness, but found people said Medi-Cal was "great," that they have there was a long waiting list: "It was kind of a downfall "been really happy with Medi-Cal," and that "they for me because I couldn't get in right away." Several take care of me." One person noted that Medi-Cal providers noted such delays can seriously impact was very prompt in responding to her and that she people seeking SUD treatment - people who should was able to get coverage quickly. get rapid access to care when they are ready. One described the need to "strike while the iron is hot." "I'm satisfied with the Medi-Cal coverage. Some also described experiences of providers and insurance plans making care decisions that weren't I am very thankful that they cover my aligned with their preferences, such as being moved to medication, the treatment. It's another another county for treatment, being discharged from opportunity to have another life, not treatment too early, or being denied services or medi- cations. A few people with dual diagnoses and their normal - it will never be normal because loved ones recounted struggles with annual re-enroll- I will always have that inside of me, that ment requirements and with finding local providers. I am an alcoholic and addicted, but I can People also described frustration over Medi-Cal's maintain it." inability to provide other social services such as hous- ing support. As of publication time, the California - 45-year-old Latinx man with dual diagnoses, Department of Health Care Services is embarking on Pasadena CalAIM (California Advancing and Innovating Medi- Cal), a multiyear plan to transform the Medi-Cal However, despite satisfaction with coverage, the program and make it integrate more seamlessly with interviews surfaced complaints about the health other social services, including housing support.8 care environment they faced. Many called it chaotic, describing how they were unable to access treatment Administrators, providers, and experts described hur- due to missing staff or medication shortages. Others dles such as Medi-Cal limits on allowable services or were disheartened because their providers had large limits on total or daily treatments. However, under the caseloads and limited availability. One person said state's Drug Medi-Cal Organized Delivery System, the it took her over five weeks to be connected with a primary determining factor of whether a patient needs therapist who is only available for visits once every services is that patient's medical need as determined two months. Another described lengthy paperwork, by a doctor or other qualified health professional, consents, liability waivers, and a long psychosocial in accordance with established guidelines.9 (There assessment every time they enter a new program. had been limits on residential treatment, but the state ended that policy with new guidance effective January 1, 2021.10 More than 90% of Medi-Cal enroll- ees live in a county participating in the Drug Medi-Cal Organized Delivery System. California Health Care Foundation www.chcf.org 10 The COVID-19 pandemic exacerbated challenges "The meetings are 'very beneficial.' Of but also provided access benefits. Interviewees with dual diagnoses described the negative impacts of the course, it's online, on Zoom. But it's still pandemic on their mental health and substance use better than nothing because usually we status. Worsening symptoms included depression, anxiety, and feeling isolated. A few people reported do gatherings - we hang out in person an increased urge to use drugs or alcohol, with one and hug on each other and love on each citing a relapse that led her to go to detoxification. Mental health and SUD providers also reported wors- other, but right now it's just virtual hugs and ening symptoms in their patients with dual diagnoses kisses. But it's pretty cool. It's something that included increased self-harm, suicidal ideation, we have to get used to, because for us it's and self-medication. A mental health and an SUD provider both noted that the socializing and social recommended we go to at least a meeting a supports people receive from in-person treatment day. If you get yourself to at least a meeting were no longer occurring. a day, most likely you're going to stay sober each day, because it holds you accountable." "I was doing great. I was going to AA - 37-year-old Latinx man with dual diagnoses, meetings, I was going to church, I was Riverside County meeting other people. And then coronavirus came and I had a relapse. I quit taking my Telehealth use surged during the pandemic, including in behavioral health. Some people with dual diagnosis psych meds, I started drinking. I got really reported that they have been attending peer support depressed and I had to go to detox." groups online and find them useful in maintaining sobriety. However, others said they choose not to par- - 60-year-old Black woman with dual diagnoses, ticipate. One person with dual diagnoses stated that Riverside County if a meeting is happening on the web conferencing platform Zoom, "It is not a meeting." However, the research also pointed to ways that the pandemic-inspired relaxation of requirements around telehealth, confidentiality, and prescribing has sup- ported greater access and care coordination. For example, rules were loosened around obtaining writ- ten consent for disclosing a patient's SUD records when they transition to telehealth services. In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 11 Social Determinants of Health A number of interview participants reported that People with dual diagnoses were at highest risk of being unemployed led to feelings of depression and relapse in either condition when faced with the inabil- anxiety, homelessness, and sometimes to crime. Some ity to secure employment and/or safe, stable housing. said that depression reduced their motivation to seek Such critical points of vulnerability often come at a job. In addition, pandemic restrictions exacerbated transitions such as release from emergency hospital- the challenge of finding jobs, and a few people with ization, residential treatment, incarceration, or during dual diagnoses lost their jobs due to the pandemic. a mental health or physical health care crisis. Employment "The only thing that I would change is Finding and keeping a job is often difficult. Most somehow to help people get jobs better. I of the interviewees with dual diagnoses want to work, citing not only the need for income and housing secu- don't feel like they meet those needs. They rity, but also a desire to have a "sense of purpose." gave me lists of places, but I've called a lot However, they related experiences that showed how difficult it can be for them to get and keep jobs. They of places and they won't hire. So I feel like may need flexibility in their work schedule to stay in they should have more direct help to work treatment and may have transportation problems. Other barriers include stigma related to homelessness, with companies to actually make a system criminal justice experiences, and mental illness itself. where they hire people like me." - 37-year-old Latinx man with dual diagnoses, Riverside "When I was working, I never wanted to have to go to my boss to tell him I have to take Few resources for help in the search for employ- ment. Most participants struggling to find employment time off to go get treatment. So usually I did not report having access to resources to support would just keep not treating it, and it would their search. However, some said they received help from providers and/or supportive housing environ- just get worse and worse until I got fired ments with connections to employment or job-training or quit. It's like I would rather get fired for programs. some other miscellaneous bull than have to Housing tell my boss, 'I struggle from addiction and Homelessness can exacerbate symptoms and I'm a major depressive bipolar. So, I need to relapses. Many of the interviewees have experienced homelessness, and some were currently residing in take off three weeks for my mental health.'" shelters. Some described how homelessness aggra- - 35-year-old White man with dual diagnoses, Riverside vated their mental illness and SUD, and how their co-occurring disorders made it difficult for them to All these problems were represented in the inter- find and maintain stable housing. Several people said views. One mother of a person with dual diagnoses that being homeless caused feelings of depression explained that her son sometimes does not think and anxiety and led them to use drugs in an effort to logically when he is in crisis and therefore acts out, feel better. Interviewees also said that being homeless leading him once to break a window while working at impeded access to health care. a fast-food restaurant and being fired. Several partici- pants with a diagnosis of schizophrenia described the "impossibility" of maintaining a job. California Health Care Foundation www.chcf.org 12 A mother whose son has a dual diagnosis noted that "If there was just some way to give housing while homelessness is dangerous, living without any to the homeless, to get us off the street, support is also dangerous: "He'll bring street people that would be the most necessary thing to back to his apartment that rob him and assault him and so - even if he has his own place - it doesn't getting us to stop using drugs and drinking. mean that he's safe." I would truthfully like to change my life around and get a home and be able to have "Homelessness stuck me in a rut. There my children back in my life. And I'm sure wasn't a day that I would let myself be that's what every homeless person wants sober on the streets because it's such a for themselves, to be part of the community demoralizing, hopeless, fearful experience. instead of being labeled homeless." You'd have to walk around with a backpack - 34-year-old White woman with dual diagnoses, Chico with all of your belongings, embarrassed that someone might see you. It's an ugly "Every Tuesday, they have a roundtable experience. meeting where all my counselors, my probation staff, the judge, my lawyer, any of "So I made a promise that I would never be the other staff that helps out and volunteers sober or in my right mind when all this was all get together and they discuss our cases. happening. Otherwise I would lose control. They go over my weekly report, if I have I was in no condition to do anything positive any concerns or triggers or red flags. They whatsoever, so I tried to self-destruct." go over what needs to be done for the - 39-year-old White man with dual diagnoses, Santa Ana next week. I feel like that's a very positive program. I feel like that's what everybody Supportive housing helps. Many interviewees were living or have lived in supportive housing or "sober deserves and needs." living" housing.11 Supportive housing combines per- - 37-year-old Latinx man with dual diagnoses, manent housing with wraparound care and case participating in a court-ordered 18-month management services, while sober living housing outpatient SUD program, Riverside offers drug- and alcohol-free housing as well as peer support and addiction recovery services.12 Those who Some said the constant danger of violence on the had previously experienced homelessness expressed streets and being surrounded by others struggling gratitude for a place to sleep, shower, and eat. with similar issues made it difficult to maintain their Interviewees also appreciated the benefits from peer recovery efforts. An SUD provider administrator in support groups, transportation to appointments, and Monterey said, "A lot of people use substances just to access to counselors or therapists, although some said deal with the stress and the trauma of homelessness. needed services were lacking. They may take amphetamines to stay awake at night because they're afraid of being killed, so they can't fall asleep at night." In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 13 Not everyone can find a place in supportive housing. Criminal Justice Involvement Some loved ones of people with dual diagnoses said Problems accessing comprehensive care while there were barriers to gaining entry into supportive incarcerated are common. Many people said they housing due to the limited number of spaces avail- received some treatment while incarcerated, but there able and restrictive "one strike and you're out" rules was widespread sentiment among people interviewed around using drugs. that treatment programs relied mainly on provid- ing psychiatric medications rather than therapy and counseling. "People shouldn't be just turned away [from housing] because they also do "They were giving me treatment in prison, drugs. That means they probably need but it wasn't really hands-on. The therapists more help because they're about to hit were more willing just to give you drugs to rock bottom. Your option shouldn't be calm you down and make you sleep instead either become a functioning addict or hit of really helping you or talking to you and rock bottom because you don't know how asking questions." to help yourself." - 51-year-old White man with dual diagnoses, Riverside - Sister of a person with dual diagnoses Some interviewees did see therapists and counselors To help fill the gap, some mental health and SUD pro- or attend peer support groups while they were incar- viders said they offer referrals or help people find a cerated. Typically, interviewees said they received place to stay, such as motels, shelters, or transitional treatment either for their mental illness or for their housing programs. Some provide transportation SUD, but not both. In fact, some said their providers support, which can be crucial for people with dual did not know about their other diagnosis. diagnoses. Other providers try to make it easier for people who are homeless to get care. One provider Providers shed more light on some reasons why peo- organization that serves mainly people with dual diag- ple with a dual diagnosis who are incarcerated may noses made changes to its specialty buprenorphine not receive all of the care they need. Some pointed to clinic to better serve people experiencing homeless- narrow contracts between behavioral health providers ness. To become a "low-barrier" setting, the clinic and state prisons. For example, some contracts allow added drop-in hours available every day. only cognitive behavioral therapy, and several provid- ers mentioned an inability to offer medication-assisted treatment for opioid use disorder in the prison system. It should be noted that in early 2020, the California Department of Corrections and Rehabilitation and California Correctional Health Care Services launched the Integrated Substance Use Disorder Treatment program.13 The program includes the prescribing of MAT when appropriate. All 35 California prisons now include people who are incarcerated and actively on MAT - a total of 11,227 people, up from 546 in January 2020.14 California Health Care Foundation www.chcf.org 14 Court-ordered programs are less effective if peo- "Without a supportive family, having a case ple are not ready. People with dual diagnoses with manager helps me a lot. It makes me feel diversion program experience said they were less secure, like I have someone that cares when interested in treatment when they had no choice and the services were imposed on them. Some reported I get unstable, when I stop taking my meds. that they only participated in diversion programs They're here to give support. And I didn't because it was required and that they did not want to go to jail. One person described how they would get have that all those years of homelessness high before treatment appointments or meetings with and before. I have it now and I believe that's their parole officer and would take detoxification con- coctions from "head shops" to dilute drug test results. what helped make me be able to maintain a place to live." - 60-year-old Black woman with dual diagnoses, Menifee "I didn't want to be there [in a diversion program] because I was still getting high. I Diversion programs offer important benefits. A wasn't trying to get help. I wasn't expecting number of interviewees had been, or were still in, diversion programs, which can allow people to avoid to find anything there to help me quit. I was incarceration. Such programs typically require treat- still out of touch with my circumstances and ment regimens and impose restrictions surrounding many aspects of life. The people with dual diagnoses with my disease. The only cares and worries I who had been in these programs typically appreci- had were when I was going to get [arrested] ated the opportunity to invest time and energy in their again because then I wouldn't be able to get recovery, as well as to avoid incarceration. the drugs. I was so wrapped up in my own enslaved world of being high." "Basically, if I'm imprisoned, I'm locked in - 64-year-old White man with dual diagnoses, Riverside behind bars like an animal, and they're not treating what's causing the behavior. "This [diversion program], to me, offers a way to address my criminal ways, my mental health, and why I'm making those decisions. It gives me tools to think and not do it. It gives me a lot of knowledge about why I'm doing drugs to numb those feelings and not feel so out of place or weird. There's no advancement like that in prison. That is the difference I see." - 39-year-old White mam with dual diagnoses, Santa Ana In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 15 Release from incarceration presents challenges. "After I had my second child, I was so upset After release, people may have difficulty obtaining health care coverage, continuing any treatment they about the fact that I had used during my had been receiving in prison, or connecting to com- pregnancy, that I did quit on my own. munity resources. One person with a dual diagnosis I moved somewhere I shouldn't have. I said she was released from jail without an adequate amount of medication. She had been given a 14-day moved up by my mom. My mom is a user… supply of antidepressants with no refills and the review she created a lot of problems for me. I was application process for Medi-Cal took 30 days, so she was forced to abruptly stop taking her antidepressants. calling [Child Protective Services] because I Providers stressed the need for greater coordination was upset about my son. I was being weird, between the criminal justice and behavioral health systems at the time of release because this is period I guess. So I got involved with CPS and when people with dual diagnoses may be at highest then they were the ones that prompted the risk for relapse. drug rehab programs." Law enforcement officers are often not trained to - 43-year-old White woman with dual diagnoses, properly respond to people with dual diagnoses. Olivehurst Loved ones of people with dual diagnoses spoke about the painful decisions they often had to make, includ- Family members and close friends face challenges. ing calling the police during crises. They noted that Some of the caregiver interviewees detailed their police officers generally could not provide meaningful struggles with becoming a Lanterman-Petris-Short15 help, and instead would arrest their loved ones and/or (LPS) conservator, understanding their rights as a con- put them on a 5150 hold. The mother of a person with servator, or gaining health care power of attorney. a dual diagnosis observed that if police officers don't Others, who had gained conservatorship, noted that think that somebody has a plan for immediately killing law enforcement personnel and health care providers themselves, "they don't help them. And that's insane. often do not fully understand or comply with LPS con- So there needs to be more training across the board servatorship rights, including the right to authorize the for hospitals and police." placement of their loved one in a county treatment facility or hospital.16 One mother described a situation However, several participants said they have often in which her son was having a psychotic breakdown, sought and received support from police officers to and she urged doctors to place him in inpatient men- de-escalate situations, locate missing loved ones, and tal health treatment. The doctors ignored her request, educate others on mental illness. insisted that his symptoms were due to his drug use, and recommended that he instead be placed in resi- Child custody is a major factor for mothers seeking dential SUD treatment. treatment. Involvement by Child Protective Services came up in discussions with a number of interview- Another parent attributed some of the challenges they ees. Some mothers described their fear of telling their experienced as a conservator to the complexity of health care providers about their substance use, or the the health care system and policies that require adult extent of their problems with mental illness - even patients to sign HIPAA (Health Insurance Portability when pregnant - out of fear of losing custody of their and Accountability Act) agreements before family child or children. On the other hand, some described members or close friends can receive conservatorship. how their motivation to maintain, or to regain custody This parent said they developed a local conservator of their children, convinced them to seek treatment. assistance group to support people serving in this role to understand their rights. California Health Care Foundation www.chcf.org 16 "There's a huge systemic issue, at least in Interpersonal Relationships Los Angeles County, where they [doctors] and Stigma Engaging family and friends can support recov- don't understand Welfare and Institutions ery. Many people with dual diagnoses described the Code 5008.2. They're mandated by law to support of family and friends as important to their recovery efforts, and a few people believed that not take family input which would be relevant having their loved ones' support served as a challenge and recent history into account when in their recovery. making any kind of decision on whether to However, some people described turning away from put someone on a 5150 hold, or whether their families and friends when they were suffering to keep someone on a 5150 hold and keep most from symptoms or after getting into trouble. Some reported feeling judgment from loved ones them hospitalized. And they're not following who assume that they will relapse. A mother said that the law at all. Which means that a lot of family members did not want to be around her son, and acknowledged her personal shame surrounding people like my son are not getting in the his dual diagnoses. She said, "Do I talk about it to hospital even when he tells them that he's people? No, I'm as private as I can be with our family." out of control and thinks he might end up dead because he might overdose or walk in "They still have that uncomfortableness, like, front of a bus." 'Okay, well, he's clean now, but when is he - Mother of a person with dual diagnoses going to relapse again? He's done it over and over so many times.' Several interview participants cited the National Alliance on Mental Illness (NAMI) as a support resource for themselves and their loved ones with "To me, they're still waiting for me to fail dual diagnoses. NAMI and its state organizations offer again." resources, education programs, and support groups (both in-person and virtual) for families, individuals, - 37-year-old Latinx man with dual diagnoses, Riverside and educators. A parent noted that their involvement with NAMI helped connect them to others who could Providers who "really care" make a difference. relate to their experiences. Interviewees described higher-quality care and better outcomes when they felt like their providers listened, made them feel important, and made an effort to tailor treatment to their individual needs. In several interviews, participants said they were being treated as a "whole person" and expressed gratitude for pro- viders who went out of their way to help them address social issues such as housing, food, or transportation. One person said they felt like their therapists and counselors helped them "find themselves" and moti- vated them to move forward. In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 17 Peer support groups offer a safe space. People with "I have a really supportive family. I dual diagnoses described positive experiences shar- even have aunts and uncles that are in ing their stories with peer support groups for both recovery with like 30, 40 years' sobriety SUD and mental illness, particularly when support group leaders had similar experiences. Many people and abstinence from drugs. So that said they have attended peer support groups at their is comfortable, and my family knows providers' organizations, supportive housing environ- ments, or through AA or NA. A few described peer where I am, and we're really close." support groups as "safe spaces" to be open about - 51-year-old White woman with dual diagnoses, their experiences without feeling judged. San Mateo A person with a dual diagnosis described his posi- "Even though I can't say they're tive experience in a men's rehab program, where they my friends, and I don't know them offered more individual sessions with counselors than previous programs he experienced. He said the atten- personally, I know they're going through tion made him feel like counselors were concerned the same kind of crap that I'm going with him and wanted him to get the proper help. Another person said they were grateful when providers through. Not all of them are living in checked in via phone frequently and showed patience their cars, but they're all going through when describing a new medication and its side effects. hell. And I can be honest and open and Some people with dual diagnoses felt like they could connect on a personal level with their provider due talk and not be judged by these people to their similar backgrounds or lived experiences. One at all, which is nice. It's a peer network." explained why his therapist made him feel comfort- able: "I mean, we're just kind of on the same level, - 56-year-old White man with dual diagnoses, Los Angeles and then we've been through some of the same stuff." Several interviewees said they served as formal or "The counselors knew what they were informal leaders or mentors for their peer support group or network. Some people with dual diagno- talking about, because they've been ses and providers noted that facilitating peer support through the same things that I've been groups, being involved in decisionmaking, and volun- teering on advisory boards allow people to serve as through. And they were more caring, role models and to motivate change while also having you know? More one-on-ones with a sense of purpose. them. Like times when we were going through struggles." - 51-year-old White man with dual diagnoses, Riverside California Health Care Foundation www.chcf.org 18 "Being a volunteer has helped me. It's been "So you have to wait another three weeks, positive . . . just to be able to share my own and then you finally see the doctor. And experiences and try to do better with other then the doctor just listens to what you say people who I know have gone through some your symptoms are and he just prescribes of the same stuff. I try to call and check in you medication. It's not really therapy. It's and see how everything is going so I can just, 'Here, take this pill and go away.' It give them coping skills." didn't really make me feel all that good. It - 34-year-old Black man with dual diagnoses, didn't make me feel like I even mattered. Gardena (Los Angeles County) It kind of made me feel like I was just People with dual diagnoses sometimes feel stigma- another number." tized by their providers. Some interviewees felt their - 34-year-old Latinx woman with dual diagnoses, providers judged them or had preconceived notions Hemet (Riverside County) about them, leading a few to question how honest they should be with those in the health care system. One person described how she was trying to stop A dual diagnosis carries more stigma than SUD or using drugs while pregnant, but was too afraid to talk mental illness alone. People interviewed described to her obstetrician about it. Several people and their an almost overwhelming feeling of embarrassment or loved ones said the stigma sensed from emergency shame due to having two diagnoses, both of which are room (ER) and hospital providers led them to avoid stigmatized in society. While many were more accept- treating withdrawal symptoms or other physical prob- ing of their primary, or original, diagnosis, the second lems. One person described being discharged from diagnosis not only made it more difficult to obtain the hospital in spite of telling doctors they felt sick; treatment for both conditions but also increased their the person's sepsis was treated only after readmission perceived stigma. One interviewee described what he for an overdose. typically heard from others in treatment: "They say, 'Well, I have a mental health problem, but I'm not a People described different ways they felt they were junkie.' I was like, 'Well, I have substance abuse, but treated with disrespect or didn't get sufficient atten- I'm not mental. I'm not crazy.'" tion and support from providers. One man said he felt like the doctors at a drug treatment program were not seeing him as a "whole person" and were just focus- ing on his criminal history and drug use. Other interview participants felt they could not con- nect with their providers. For instance, one person described their case manager as "too clinical" and felt like all their interactions were like an interview rather than a conversation. Another person described his mental health therapist by saying, "He's just too stern. He didn't get what I was saying and where I was com- ing from." In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 19 Fear of stigmatization can lessen over time. A num- "My grandmother used to say, 'We have ber of older interview participants (age 49 to 60) who no mental illness in our family,' and yet were diagnosed long ago became emotional when my uncle and my aunt were both horrible describing their journeys and how they overcame stigma from families and providers. One man delayed alcoholics. I think depression was very seeking care for fear the diagnosis would be on his prevalent in our family. I think every family "record" and prevent him from getting jobs. However, "it got so bad" that his health concerns outweighed probably has something to do with mental the stigma. illness. I don't think anybody's untouched. Others said their feelings of shame or embarrass- I mean, what's normal? But people don't ment dissipated over time, in part due to meeting like to talk about it." other people through group therapy who were going - Loved one of a person with dual diagnoses through similar experiences. They described currently feeling support from family in addressing their dual diagnosis, and that they all came to a place, over time, Many participants perceived that others in their life of not "worrying too much about what people think." believe SUD is a sign of weakness and felt shame When talking about stigma, one person mentioned that they did not have the "willpower" to stop using. "fighting stigma" or "bringing awareness to the com- Several people with dual diagnoses described how munity" as a way of confronting this feeling. Many stigma stemmed from a lack of understanding that a interviewees indicated they had family members who mental health condition could impact substance use struggled with mental illness or substance use. or vice versa. One person said his family could not understand why he took prescription medication for a mental health condition, "which they view as drug "As soon as they know he's got an addiction, seeking." Some said they retreated from family and friends as their substance use and mental health issues they don't treat the physical problems. A lot worsened. of times he has had such physical damage because of the not eating for days and "There was despair because I felt bad being getting beat up on the street and having there. Always in my mind was, 'What are infection issues. They totally disregard it people going to say? What will people say?' because they just chalk it all up to being an And 'My family will say that I am crazy.'" addict. And they don't really pay attention - 55-year-old Latinx male with dual diagnoses, to why the combination of addiction and Los Angeles bipolar is so life-threatening." One interviewee described how she was able to nor- - Loved one of a person with dual diagnoses malize her treatment for a mental health condition by separating it from her SUD. She observed, "The truth is, a lot of people who don't consume or use drugs also have a mental health diagnosis. If you don't treat it, it can become a bigger issue." California Health Care Foundation www.chcf.org 20 Race/Ethnicity The five people with dual diagnoses who were inter- "I never got help. Being African American, viewed in Spanish had distinct fears about seeking at least in our family, you don't talk to treatment. In this study, those interviewed in Spanish lived in urban areas with a high proportion of Latinx therapists. If you have a problem, you residents. All these interviewees reported being able don't take it out of the house. My mom to access either a provider who spoke Spanish or a Spanish interpreter. One person with a dual diagnosis drank, so I knew not to go and tell anyone said some providers would ask about immigration sta- that. I was taught early on that you just tus, and that would deter her from getting treatment. This interviewee, and other people with dual diag- don't tell anyone your business. So when noses who were undocumented, expressed fear that I would talk to a therapist, I wouldn't tell accessing care would negatively impact their path to them anything." citizenship. (See Appendix B for limitations in recruit- ing Spanish-speaking participants with limited English - 45-year-old Black woman with dual diagnoses, proficiency.) San Mateo Some people felt stigma was especially pronounced Race/ethnicity can make people feel isolated during in their own racial and ethnic groups. A number treatment. Several Black people with dual diagnoses of Black interviewees described beliefs ingrained in felt that they "stood out" in majority-White treatment their families and communities that made it difficult settings and that others did not understand their life to accept their diagnoses and seek care. One person experiences. One person described what it was like explained how growing up in a Black family taught her when they first started seeking treatment: "I used to that "if you have a problem, you don't take it out of feel like everywhere I went, I was the only Black girl. the house." A few people described their own experi- No one ever understood, couldn't understand, what ences denying their mental illness as a result of the I was saying, and then they were trying too hard to stigmatization of mental health treatment among the understand it." Black community. One Black male interviewee said he left SUD treatment Several people with Latinx backgrounds described following an experience where he faced racism from their experiences feeling like it "wasn't okay to have fellow patients, and staff did not address it. Another those kinds of [mental health] issues." One said that Black interviewee described needing different hair they grew up thinking they needed to "man up and supplies than the White patients in a residential deal with things" and expressed worry that their treatment center, but restrictions made the products family would think they were crazy. Providers and unavailable to her. She believed this impacted her subject matter experts noted how cultural norms feelings of comfort and inclusion in treatment. lead some Latinx people to deny they need treat- ment, specifically medications, because "they can Several interviewees described their preference for do it by themselves." The providers and subject mat- receiving treatment from providers of the same racial ter experts also believed that stigma around mental and ethnic background because these providers can health disorders and SUD in Latinx communities pre- relate to them and help them feel more comfortable. vents people from seeking care. One interviewee noted, "My therapist was raised in the same kind of environment that I lived in. Usually when I pick therapists, almost like a doctor, I think of a White lady or an old White man - someone that you In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 21 can't even relate to, with some glasses on their nose. Of those who said they were improving, several But mine, she dresses like I would dress. She's like a reported that they "feel good" and are able to open regular person." up more to friends and family, and generally feel less stress and anxiety. A few said they are experiencing One therapist also described challenges establishing fewer symptoms such as relapses, overdoses, and trust with a Native American client, noting that the cli- urges to use substances. Some said they think they are ent expressed hesitancy that they were receiving care improving simply because they are engaged in treat- from someone outside of the providers with shared ment. One described being able to now help others background they had seen in the past through Indian and give back to the community. Another reported Health Services. having a better understanding of where trauma comes from and how influential trauma is to addiction. Despite All the Some interviewees spoke about what they had learned through treatment and their determination to proceed Challenges, Most Are toward wellness. A 51-year-old White female in San Mateo explained: Improving "It was a learned behavior that I acquired from the Although interviews with people with dual diagnoses trauma that I have gone through in my life. This place and their loved ones highlight difficulties, they also [residential drug treatment program for women] made revealed successes in seeking and receiving treat- me see things that now make sense. And it's coming ment. Their stories make real the impact of structural together like a puzzle that's been just pieces scattered and cultural problems that complicate and sometimes all over the universe. And now, I'm finally knowing that derail their progress toward health. And they show it's not my fault or that I'm different or I'm like an alien that coordinated, quality care makes the difference. or a weirdo or just a psychotic, crazy woman. "No wonder. What I've been through is horrific, and Their stories make real the impact of I've been taught to just not ever talk about that. That's structural and cultural problems that not okay. And it's not even my family's fault. That was just the only thing that they knew, and that's how I complicate and sometimes derail their learned that. progress toward health. And they show "So I'm here to break the cycle for my daughter and that coordinated, quality care makes then her children and their children." the difference. Another interviewee with a dual diagnosis said simply, "I'm enjoying sobriety." During the interviews, people with dual diagnoses were asked if they believed they were improving in their path toward health. Most said yes. Only one per- son said they did not feel they were improving, while a few reported they were not "actively getting better." California Health Care Foundation www.chcf.org 22 Conclusion - Moving All interviewees - people with dual Toward Integrated Care diagnoses, their loved ones, provider The 93 interviews conducted for this report revealed administrators, direct care providers, and important information about the experiences of peo- subject matter experts - agreed that ple with dual diagnoses in seeking and receiving care, and that of their families and friends. Many of these integrated care is the best way to improve firsthand stories reflect the pervasive problems that outcomes. hinder access to coordinated care for both diagno- ses. The systemic dysfunction that segregates mental Coordination with other systems, including those that health, substance use disorder, and physical health address the social determinants of health, is a critical care into separate administrative and financial systems factor in improving outcomes. Many people with dual is cumbersome for providers and organizations to diagnoses emphasized that they achieved well-being work with. But for the people who need effective care when all their health care providers worked together, and need it quickly, the impact can be devastating. and when other supports were available to them: housing, employment training and placement, and The interviews made clear the power of the "primary transition from residential treatment or incarceration. diagnosis" to corral people into either the mental health silo or the SUD silo and to effectively keep Overall, the interviews underscored the importance of them there in the long term. Providers are frequently an integrated approach to treatment that addresses prevented from treating or billing for a "secondary" people's mental health and SUD diagnoses, as well diagnosis, and cannot easily coordinate care across as their basic human needs for shelter, income, social systems. People in residential treatment for either connections, and respect. As several interviewees mental illness or SUD often find that their other expressed, they respond best when they perceive diagnosis is ignored, putting them as risk of relapse. they are being treated as a "whole person." Common difficulties in access include long wait times, medication shortages, lengthy paperwork, and limited availability of providers - which erode the motivation of people to seek and sustain care. All interviewees - people with dual diagnoses, their loved ones, provider administrators, direct care pro- viders, and subject matter experts - agreed that integrated care is the best way to improve outcomes. Ideally, integrated care would involve the concurrent treatment of substance use and mental illness in the same location by a multidisciplinary team, supported by a single payment and data system. When fully inte- grated care in the same location is not feasible, it is still possible to support robust and consistent com- munication between providers. Many of the people interviewed attested to receiving effective care due to careful coordination among their mental health and SUD providers. In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 23 Appendix A. How Structural Separation of Mental Illness and SUD Treatment Confounds Provider Organizations and Providers he separation of mental illness and SUD treatment T and she was kind of doing it almost like surreptitiously. frustrates provider organizations and clinicians in She's not allowed to say she's doing substance abuse their attempts to treat people with dual diagnoses. treatment, but because she was so good at what she Following are some examples and quotes from pro- does and good at working with these clients, she was vider administrators and direct care providers who able to engage them and address these issues in a were interviewed for this report. Quotes have been roundabout way." lightly edited for length and clarity. Differing guidelines for treating mental illness and Separate funding streams and contract structures SUD can lead to inappropriate or incomplete care. present challenges. There are different requirements Multiple subject matter experts, providers, and pro- and contracting schedules for mental health treat- vider administrators discussed restrictions related to ment and SUD. A behavioral health director in San billing and reimbursement. They must assign a pri- Bernardino County described how the rules can con- mary diagnosis code to enroll a person into treatment flict with the reality of patient care. and to file a claim for payment, placing the person in one system or the other rather than treating both "I can't start billing until I have a diagnostic code. And issues at the same time. Providers are prevented it can't be a provisional code . . . so I have to figure from administering multiple services on the same day out what is wrong with you right now, and give you in the same location, a restriction that can be harm- a label, and then I have to put together a treatment ful for people with dual diagnoses seeking care for plan for that diagnosis. We all know that's not how both conditions. Many direct care providers discussed real life works, but that's how we're kind of forced to using outside organizations such as sober living facili- do it. Sometimes we'll have someone present and ties and community resources as well as other creative they're psychotic, but we don't know what's caus- solutions to the segmented regulations. The director ing the psychosis. Is it a psychotic disorder or is it of an integrated health program in the Bay Area gave methamphetamine use? So we need time for that to the following example: clear up a little bit. Right now I can't see anyone who doesn't have a truly identified mental health diagno- "If you have a contract to provide SUD treatment in a sis on our mental health side. I can only see you on county, and if some of your clients have a co-occur- the SUD side - if they have that." ring serious mental illness, you may not be able to provide those services even though you have the Direct care providers gave examples of how they tried capacity and the ability and you do it in other places. to find ways to fully treat patients despite the rules. An If you don't have a contract to do that in that county, addiction psychiatrist in Los Angeles County offered then if you have a client who has a bipolar disorder this example: in addition to their substance use, you may have to refer them out for psychiatry because it's not covered "In our full-service partnership, we had groups to help under the substance use contract. It's just a silly bar- treat mental illness, to treat grieving, to treat depres- rier to care." sion. We could get patients dialectical behavioral therapy, but we were not authorized to have any sub- stance use treatment groups on our site. We had a counselor who does kind of individual therapy, but she had a background in substance use disorders, California Health Care Foundation www.chcf.org 24 Much documentation is required to provide and be reimbursed for mental health and substance use care. In addition to maintaining separate EHR systems, providers must also meet requirements for reimburse- ment by Medi-Cal. Some provider administrators and direct care providers described the requirements as time-consuming and counterproductive to providing care. The director of an integrated health program in the Bay Area said: " Every progress note is a narrative documentation that must be tied back to a problem area in the treat- ment plan. So if you have a client who is coming to you for SUD issues but their grandmother died and they're full of grief and sadness, if grief isn't in the treatment plan and you document discussing grief in a session, then you could potentially have service disallowed, which is ridiculous." Agencies wanting to increase their capacity to fully treat mental illness and SUD need statewide creden- tials. The requirements for getting these credentials are separate (substance use is a state-level license while mental health is county-level). The process can be long, and providers must pay fees throughout the credentialing process. A former managing director of a residential drug treatment program said: "Getting credentials in California right now even to get drug Medi-Cal certified is taking 18 to 24 months . . . agencies are wringing their hands because the delays in actually going through any certification process in the state right now are - it's just not even practical." In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 25 Appendix B. Demographics of All Interviewees As briefly described in the introduction, in summer Table B2. M ental Health Diagnosis and Type of Substance 2020 NORC conducted 93 semi-structured hour-long Used by Client PERCENTAGE (n) phone interviews with people with dual diagnoses, family and close friends of people with dual diag- Mental Health Diagnosis noses, direct care providers, subject matter experts, Depression 55% (29) and provider administrators. Interview participants received a $50 gift card to thank them for their partici- Bipolar Disorder 23% (12) pation. (See Table B1.) Anxiety 13% (7) Table B1. Number of Interviews, by Interview Type Schizophrenia 9% (5) NUMBER OF INTERVIEW TYPE INTERVIEWS Post-Traumatic Stress Disorder 9% (5) People with Dual Diagnoses 54 Unspecified 8% (4) Family Members / Close Friends of 8 Schizoaffective Disorders 6% (3) People with Dual Diagnoses Paranoia 6% (3) Direct Care Providers 20 ADHD 4% (2) Subject Matter Experts 6 Hearing Voices 4% (2) Provider Administrators 5 Substance Total 93 Alcohol 47% (25) Fifty-four people with dual diagnoses were inter- Methamphetamines 30% (16) viewed. Forty-nine were interviewed in English, and five were interviewed in Spanish. The most commonly General* 13% (7) reported mental health diagnosis was depression, and Heroin 11% (6) the most commonly cited substance used was alcohol. (See Table B2.) Cocaine 8% (4) Unspecified 6% (3) Other Opiates 4% (2) Spice 2% (1) *Seven people did not cite a specific substance but described a general history with substance use or issues with drugs and alcohol. Note: Participants cited multiple mental health diagnoses and substances, so number (n) does not add up to 54 in either table. California Health Care Foundation www.chcf.org 26 The substance use findings are in line with general as someone with a dual diagnosis, or to avoid care trends in drug use in California. In 2018, the opioid- - in either situation, the recruitment strategy used involved overdose death rate per 100,000 people would have missed them. Finally, some providers said was under 6.2 in California.17 Methamphetamine use that some people who might speak Spanish at home in California has seen periods of increase in the past find it easier to speak in English while receiving health 20 years, notably between 2000 and 2006.18 This is care since there are not always direct Spanish trans- pertinent to people in our study, as many had long his- lations for terms commonly used when describing tories of drug use extending back to 2006 and before. county-level behavioral health care services. Additionally, California saw another sharp increase in methamphetamine use in 2019.19 These waves of Nine family members or close friends were also methamphetamine popularity across the state could interviewed to gain additional perspective on the explain the high prevalence of methamphetamine use experiences of people with dual diagnoses as well as among the study population. to better understand the experiences of those who support people with dual diagnoses. (See Table B3.) Spanish-Speaking Participation Limitations Though significant effort was made to recruit and Table B3. R elationship of Family Member or Close Friend interview a study sample that represented a diversity to Individual with Dual Diagnosis of Californians with dual diagnoses, the study team NUMBER faced some challenges in achieving this goal. The Mother 5 team set out to interview 10 Spanish-speaking peo- ple with limited English proficiency but were able to Sister 2 interview only five. The initial recruiting approach con- sisted of following up with direct care providers who Father 1 noted they served a Spanish-speaking population to Close Friend 1 share the recruitment flier in Spanish. County websites were reviewed to identify Spanish-speaking provid- Total 9 ers, and Latinx mental health and SUD organizations across the state were identified and asked to share the Spanish-language recruitment flier with their clients. Finally, five provider administrators and five subject NORC also partnered with a Spanish-language survey matter experts were interviewed, along with 20 direct panel to assist in the recruitment of Spanish-speaking care providers. (See Table B4 for provider focus area.) people with dual diagnoses. Based on the literature, feedback from providers who Table B4. Provider Focus Area treat Latinx populations, the conversations with Latinx NUMBER OF people that were conducted, as well as anecdotal evi- INTERVIEWS dence from concurrent NORC projects, a number of Mental Health 12 hypotheses were considered for why more interviews were unable to be completed in Spanish. Primarily, SUD 4 that the political environment and discussions of pub- lic charge in Latinx communities in California dissuades SUD / Mental Health 3 Spanish-speaking people who are undocumented or Neither (ER provider) 1 who are pursuing a path to citizenship from participat- ing in research studies like this one. Additionally, some interviewees mentioned stigma in Latinx cultures, which may lead people to avoid defining themselves In Their Own Words: How Fragmented Care Harms People with Both Mental Illness and Substance Use Disorder www.chcf.org 27 Endnotes 1.Providers, administrators, and experts included 12 specialty 16."Guide to LPS Conservatorship for Family & Friends," mental health providers, four SUD providers, three SUD / National Alliance on Mental Illness (NAMI) Westside Los mental health providers, and one emergency room provider. Angeles; and "California Laws," NAMI Westside Los Angeles. All served Medi-Cal enrollees. 17."Opioid Summaries by State" (2018), National Institute on 2.For background on system challenges and potential solutions, Drug Abuse, April 16, 2020. see Logan Kelly, Allison Hamblin, and Stephen Kaplan, 18.Paul J. Gruenewald et al., "Mapping the Spread of Behavioral Health Integration in Medi-Cal: A Blueprint Methamphetamine Abuse in California from 1995 to 2008," for California, California Health Care Foundation (CHCF), Amer. Journal of Public Health 103, no. 7 (July 1, 2013): February 2019. 1262–70. 3.For information on federal poverty level, see "2021 Poverty 19."Meth Addiction Trends for California 2020," California Guidelines," US Dept. of Health and Human Services, Highlands Vistas. January 26, 2021. 4.Extensive efforts were made by the researchers to recruit at least 10 Spanish-speaking interviewees; 5 participated in the interviews. 5.Michael S. Spencer et al., "Discrimination and Mental Health– Related Service Use in a National Study of Asian Americans," Amer. Journal of Public Health 100, no. 12 (December 1, 2010): 2410 –17. 6."Substance Abuse Confidentiality Regulations," Substance Abuse and Mental Health Services Administration (SAMHSA), last updated March 30, 2021. COVID-19 Public Health Emergency Response and 42 CFR 7. Part 2 Guidance (PDF), SAMHSA. CalAIM Explained: A Five-Year Plan to Transform Medi-Cal, 8. CHCF, July 2021. 9."Drug Medi-Cal Organized Delivery System," DHCS, last modified July 8, 2021; and Program Eligibility and the Drug Medi-Cal Organized Delivery System Frequently Asked Questions (PDF), DHCS, last updated September 2018. 10.Drug Medi-Cal Organized Delivery System - Updated Policy on Residential Treatment Limitations, Behavioral Health Information Notice 21-021, DHCS, May 14, 2021. 11.See "Affordable Housing Models and Recovery," SAMHSA, January 5, 2021. 12."Supportive Housing," US Interagency Council on Homelessness, last updated August 15, 2018. 13."Integrated Substance Use Disorder Treatment (ISUDT)," California Correctional Health Care Services (CCHCS). 14."ISUDT Program Overview," CCHCS, accessed July 15, 2021. 15.Lanterman-Petris-Short Act, Welf. & Inst. § 5000.1. California Health Care Foundation www.chcf.org 28