New Orleans, Louisiana

Robert Glover, Ph.D., Executive Director of NASMHPD, welcomed Symposium 1999 participants and gave a brief overview of recent and upcoming NASMHPD activities of interest to Medical Directors, including:

• the successful Superintendents Meeting held in October 1999 where representatives from 168 facilities in 42 states attended;

• the Surgeon General’s attendance at the Winter Commissioners Meeting to be held December 12 - 14, 1999 in Washington DC;

• a joint project with Medicaid Directors to look at new medication and atypicals and develop a primer for administration and direct care staff;

• a joint initiative with the National Association of State Alcohol and Drug Abuse Directors (NASADAD) around co-occurring issues and the interplay between serious mental illness and substance abuse;

• an initiative with the Developmental Disabilities Directors on overlapping issues from the upcoming Surgeon General’s report; and

• a joint initiative with State Territorial Health Officers dealing with suicide prevention.

Dual Diagnosis Integrated Delivery Systems

Moderator:
Paul Berreira, M.D., Massachusetts Medical Director

Presenter:
Kenneth Minkoff, M.D.
Director of Integrated Psychiatric and Addiction Services
Arbour Health System
Woborn, MA

Citing that individuals with dual diagnosis (mental health/substance abuse) present systems problems at every level, Dr. Minkoff explained the necessary components for transforming state-wide systems:

• principles that incorporate a common language;

• different values and attitudes;

• system wide mission;

• clinical guidelines for treatment matching; and sufficient resources to implement the system change.

Dr. Minkoff reviewed the trends that affect the dually diagnosed population: deinstitutionalization; advancement of self determination and freedom of choice; the explosion of knowledge about biologically based brain disorders resulting from the Decade of the Brian; and increasing understanding that mental illness is distinct versus a component of substance abuse. Other disturbing trends associated with this population include increased rates of relapse, rehospitalization, criminalization, poverty, impulsivity and suicidal behavior.

As a result, people with dual diagnoses exhibit high utilization of services, often due to multiple crises in their lives. In Massachusetts, managed care data underscored that people with co-occurring disorders were over-represented (70 percent) among the highest users of Medicaid services. This population utilized acute services from both the mental health and substance abuse systems.

Dr. Minkoff observed that people with co-occurring disorders "do worse, are over represented and present more challenges because they’re system ‘misfits’." Both the mental health and substance abuse systems are designed for people with one disorder and system’s programs are designed from a single symptom model. Thus, clinicians and administrators contort patients to fit the program or the program to fit the patients. Dr. Minkoff coined this phenomenon "creative sociopathy." Clinicians, who are usually trained in one discipline or the other, often feel helplessness or rage when confronted with these clients, who often show up in incredible crisis often taking multiple categories of psychotropic medications.

As part of the Center for Mental Health Services’ Managed Care Initiative in the mid-1990's, Dr. Minkoff chaired a panel on experts on dually diagnosed individuals who were charged with developing consensus on models and strategies needed as public systems went to managed systems.

Along with an annotated bibliography produced in 1997, the panel issued Co-Occurring Psychiatric and Substance Disorders in Managed Care Systems: Standards of Care, Practice Guidelines, Workforce Competencies and Training Curricula. Intended as a blueprint for systems change, the report features sections on:

• Consumer/Family Oriented Standards for Dual Diagnosis Treatment in Managed Care Systems. The report asserts that, "Managed care systems must create dual diagnosis delivery that is customer-focused and consumer/family centered through the development of a system of care that is welcoming, accessible, integrated, continuous and comprehensive."

• Standards for Managed Care Systems Regarding Development of Comprehensive Dual Diagnosis Treatment. A structure must be established to support the development of system standards, a mission statement, philosophy or principles, a deliberate program array, and set of core competencies for all programs in the system (not just specialized programs).

• Practice Guidelines

• Provider Competencies, including both knowledge and values.

• Training Curricula.

The report was designed to provide materials and tools for systems to actually begin the change process, without additional money. Pennsylvania utilized the report to develop its own consensus document and change state regulations. Similar projects have occurred in Arizona and a region in Louisiana.

For more information on this and the other CMHS managed care reports, see www.med.upenn.edu/cmhpsr (under publications and presentations) or contact (215) 662- 2886.

Dr. Minkoff highlighted the current knowledge base about working with people with mental illness and substance abuse disorders. Within mental health, research has already indicated that intensive case management models are successful interventions with people who have co-occurring disorders (e.g. CTT, PACT, ACT). Dr. Minkoff observed that these continuous models, characterized by their front line staff and family education components, can readily incorporate substance abuse expertise.

Within the addiction system, intensive, outpatient case management has also been successful to engage hard-to-reach clients.

Another successful intervention is the modified therapeutic community approach comprised of consistent involvement with recovering peers, extended residential setting, continued support after move to independent living setting and integration of mental health and substance abuse services. Studies have shown about one-third of participants will become engaged with this level of support.

Anecdotes also suggest that the clubhouse and psychosocial models, with their philosophy of peer intervention and welcomeness, are positive interventions, although good research does not exist on their effectiveness.

After looking at all of research on both the mental health and substance abuse sides, the CMHS consensus panel identified a set of guiding PRINCIPLES, including the core principle:

"The most significant predictor of treatment success is the presence of an empathic, hopeful continuous treatment relationship in which integrated treatment and coordination of care can take place through multiple treatment episodes."

Integrated treatment does not involve some ‘magical’ amount of substance abuse treatment and mental health treatment present at every encounter. Integration does mean clients will receive multiple interventions over time distinctly mental health, substance abuse or combined. Over the course of time, these interventions will be brought into meaningful whole.

The panel maintained that providing this critical treatment relationship requires a transformation of values and attitudes within the service system. Attitudes need to reflect the reality that serious mental illness and addiction are chronic, reoccurring problems. Staff should expect multiple encounters with multiple interventions. Staff should look at progress over time and build on the components that work.

Dr. Minkoff cited the Journal of American Medicine (November 1990) for a good epidemiological study of people with dual diagnosis. The National Comorbidity study by Ken Kessler examined ECA data and found that 47 percent of people with schizophrenia had a substance abuse disorder in their lifetime while 55 percent of those in treatment had a substance abuse disorder. Data from psychiatric wards in general hospitals also show that 40-60 percent of patients have active substance use disorders and higher prevalence rates exist among people in crisis using services.

After studying the available data, the panel articulated another important principle: "Dual diagnosis is an expectation not an exception." Despite the evidence, systems of care are organized as if this principle isn’t true. Systems continue to organize resources to treat single disorders in a non-integrated way which ensures poorer outcomes.

To reorganize, systems must overcome the myths that 1) clinicians can only have one specialty and 2) clinicians must receive extensive training before working with dually diagnosed clients (as they are already confronted with these clients.)

Dr. Minkoff also included a framework by Richard Ries, MD for differentiating types of people with dual diagnosis (See Fact Sheet - What is Dual Diagnosis?). The categories include:

• psychiatrically complicated chemical dependency. Once the person is sober, s/he doesn’t meet the criteria for serious and persistent mental illness.
• substance abusing mentally ill. The abuse criteria means the person is not dependent on substances and implies s/he is making choices.
• substance dependent mentally ill. Substance dependence is its own disorder with the biological impulsivity associated with the disorder. The desired outcome needs to be abstinence because even small use leads to lack of control.
• substance abuse and non-severe psychopathology.

Because these clients straddle across the mental health and substance abuse systems, no one system feels ownership nor feels guilty that these clients don’t get good services. Yet, these are the same people who end up being high users of services. Dr. Minkoff advised the audience that, while the service systems have differences in their treatment philosophies, it is possible to bring the systems together by learning from the other system and adapting techniques.

The principle "When mental illness and substance disorder coexist, both diagnoses should be considered primary" offers a perspective to bridge the disparate systems. Currently, each system wants its own disease to be a primary. By adopting this principle, systems would ensure that each disorder receives treatment of sufficient intensity for that disorder in increments over time. This principle does not mean that clients need less treatment for either of the disorders.

Both major mental illness and substance dependence are examples of primary, chronic biological diseases. Indeed, they share many of the same characteristics, including a biological basis, hereditary, chronicity, incurability, positive and negative symptoms, feelings of guilt and failure, disease of denial. There are also parallels in the respective processes of recovery, including phases of stabilization, engagement and prolonged stabilization (including active treatment, maintenance, relapse prevention). No one type of intervention is appropriate for either disease. The selection of intervention depends on the diagnosis subtype, specific diagnosis, phase of treatment, managed care status, level of acuity, severity, disability and motivation for treatment.

Dr. Minkoff stressed that systems can be modified primarily through regulation and training. An integrated case management system might involve front-end, crisis and diversion teams which all have competencies in both mental health and substance abuse. Once these competencies are woven throughout the system, specialized dually diagnosis programs become rational programs to fill gaps in the system - not just drops in the buckets.

Dr. Minkoff’s provided a wealth of information to participants through his extensive handout. For further information, see:

Principles for a dually diagnosis system
Fact Sheet - What is Dual Diagnosis
Diagnostic Criteria for Psychoactive Substance Dependence
Barriers to Integrated Treatment
Parallels: Addiction and Psychiatric Illness
Assessing Substance Disorders in Persons with Serous Mental Illness
Alcohol and Drug Use Intake Assessment
Types of Denial and Minimization
5 Stage Model of Dual Diagnosis Treatment
Substance Abuse Treatment Scale (SATS)
Checklist for Relapse Prevention Monitoring
Principles of Psychopharmacology with Dual Diagnosis Patients
Treatment Interventions by Phase of Recovery and Type of Dual Diagnosis
Program Types
Principles of Substance Abuse Treatment in Severely Mentally Ill Individuals
Characteristics of Treatment
Clinical Approach to Diagnostic Assessment and Intervention
MICAA Phases of Engagement
Development of Substance Abuse Policies in Contracts for Dual Diagnosis Patients in Treatment Programs
Tasks of Addiction Treatment
Areas of Special Preparation for Dual Diagnosis Patients to Utilize Twelve Step Programs
Dual Diagnosis Groups
Relapse Dynamic
Relapse Prevention Treatment
Elements of System Integration
Components of an Integrated System of Care
Integrated Psychiatric and Addiction Continuum
Community Consensus-Building Collaborative
Dual Diagnosis Bibliography

Moderator Paul Berreira, MD explained Massachusetts’ systems change initiative, the Massachusetts Community Consensus Building Collaborative.

In October 1997, Massachusetts was awarded a Community Action Grant from the federal Center for Mental Health Services. The grants were designed to assist state, counties and cities with more uniformly adopting exemplary practices at the local level. Massachusetts’ target population was the seriously and persistent mentally ill who have substance abuse problems, a population currently served with public dollars through three agencies, the Department of Mental Health , Division of Medical Assistance and Department of Public Health, which houses the Bureau of Substance Abuse. The project’s intent was to more effectively utilize the resources of three agencies and not to seek additional funding or create a new bureaucratic structure. The project aimed to achieve consensus about the principles of the model; to identify the current resources, barriers to single model and make recommendations for overcoming the barriers.

The grant was $150,000 and had the most significance as a symbol to mobilize the different parts of the system.

During the first year of the grant, the Massachusetts’ mission was to use a consensus building process to:

• develop a shared vision and common language for describing a comprehensive system of treatment and support for all individuals with comorbid psychiatric and substance abuse disorders;
• adapt a continuous, collaborative and integrated system of care ccisc for use in local communities; and
• develop models for integration of resources within the existing state service system.

The initial goal was development of a collaborative model for policy development, planning and implementation of the continuous, comprehensive and integrated system of care (CCISC) that includes key stakeholders, puts client and family in policy and planning decision making role, addresses funding stream and funding mechanisms, and address service delivery system differences between the mental health and substance abuse service systems.

Massachusetts recognized that effective co-occurring programs had existed in the past, but many fell apart as soon as their dynamic leaders departed. Systems change was necessary to support such programs, including a bureaucratic structure to oversee systems change.

The planners issued its agreed-upon principles in Principles for the Care and Treatment of Individuals with Co-Occurring psychiatric and Substance Disorders as they apply to individuals with Serious and Persistent Mental Illness. Dr. Berreira stressed that the report’s preamble is critical as it confirms the agreed-upon joint responsibilities of all three state agencies. Maximum joint ownership and shared vision was critical given the estimated 5-7 years to achieve change in Massachusetts.

Dr. Berreira stated that system change requires focus on regulatory issues (such as language); clinical issues (including provider readiness assessment and identification of training needs); a roll out plan (including infrastructure development needs); and a system to evaluate the model.

The structure of Massachusetts’ change initiative included:

• Statewide Leadership Council comprised of state agency representatives. The Leadership Council’s initial task was to develop consensus on model principles. During the subsequent implementation stage, the Leadership Council transformed itself into a Statewide Coordinating Council to focus on development and implementation of statewide initiatives to support regional activities. This Council’s focus was on the ‘big picture,’ including regulatory issues, barriers between agencies and contracting issues.

• Community Work Groups (CWGs). The 6 regional CWGs were trained on the CCSIC model, diversity management, consensus building process and organizational change process. CWGs also worked with the Leadership Council to refine and gain consensus on the principles and design an implementation plan. During the implementation state, the CWGs’ focus was development and implementation of demonstration projects, primary components of which include training, consumer and family involvement and evaluation. Using its original needs assessment, each region will propose a first step for evolution its system. The Workgroup will then collaborate with the Statewide Council to modify and finalize the most appropriate first action step.

Some unintended yet positive changes have already occurred within the Massachusetts system as a result of this process, including:

• Once the Bureau of Substance Abuse realized that detoxification programs do not allow people on psychotropic medications into detox programs, it funded two new enhanced detox program with psychiatric expertise.

• DMH rewrote its Individualized Service Plan regulations to create a default position that, if a clinician can’t tell if a client’s functional impairment is due to substance abuse or mental illness, they are a DMH client. Previously, the fact that a client was actively using substances was almost an exclusion criteria for DMH services.

• DMH has instituted a short screening mechanism in its eligibility process so that a client can be quickly referred to the Bureau of Substance Abuse, as appropriate.

As the Symposium participants questioned the presenters, the following guidance emerged from the dialogue:

• Medicaid’s presence at the table is critical, particularly to address trade organizations’ concerns that change would cost them more money.

• Limiting the target population to people with serious and persistent mental illness eased the concern of the addiction agencies that the floodgates wouldn’t be opened up by changes.

• Instead of wishing for "integrated" programs and systems, administrators should emphasize the need for consultation, collaboration and integration at the primary clinical level of client.

• If nothing else, train people so they are competent in current substance abuse and mental health programs. Cross-training can transform programs.

• Administrators might motivate general psychiatrists to obtain competency in substance abuse with the justification that they are already treating these patients; additional training will just help them do their job better. Obtaining competency does not translate into mandating substance abuse certification.

Dr. Hester, Chair of the Medical Directors Council, concluded the session by highlighting the areas where Medical Directors have (or can create) opportunities to influence the system:

• Commenting on standards and regulations
• Involving physicians in developing practice guidelines
• Participating in a consensus building process and a written document of principles
• Ensuring that management information systems include data on co-occurring disorders
• Reviewing screening and eligibility processes
• Suggesting RFP language
• Creating training opportunities
• Influencing other systems (corrections) even if by examples
• Establishing training requirements for physicians
• Impacting a research agenda

Criminal Justice and Mental Health Interface: Community Treatment of People with Mental Illness Leaving Prisons or Jails

Moderator:
Dan Luchins, M.D., Illinois Medical Director

Presenters:
Linda A. Teplin, Ph.D.
Director, Psycho-Legal Studies Program and Professor of
Psychology and Behavioral Sciences
Northwestern University Medical School
Chicago, IL

Joel A. Dvoskin, Ph.D.
Assistant Professor, Colleges of Law & Medicine,
University of Arizona
Tucson, AZ

Dr. Teplin: The Epidemiology of Those with Mental Illness Who are In Jail

Dr. Teplin outlined several public policy changes that set the stage for the "criminilization" of the mentally ill:

• deinstitutionalization which set the stage for people to be arrested rather than treated. While in the 1950's, there were 413,000 state and county psychiatric beds nationwide, that number dropped to 93,000 by 1992. In 1954, the median length of stay was 6 months; in 1975 the median stay was 25 days; currently the median length of stay is just a few days.

• reduced amount of money spent per capita on mental health care. In 1975, $10 was spent per capita. By 1992, the amount was about $5 per capita.

• legal changes. Over the years, restrictions have been put in place on procedure and criteria for commitment. Society has established the right of people with mental illness who are not dangerous to live in the community and not receive treatment.

The number of people with mental illness in jails is significant. In 1960, on an average day, about 120,000 people with mental illness were in jail nationwide. In 1997, the jails house about 600,000 persons with mental illness on an average day.

Dr. Teplin offered a review of research from the last 20 years and implications for public health policy. She commented that little evidenced-based research exists on people with mental illness in jails; most of the data is anecdotal evidence. Dr. Teplin shared an anecdote from her early involvement with this research topic. In a 1975 study, she rode around with police to see how they handled persons with mental illness. What she found was that police recognized persons’ mental illness. However, since the mental health system couldn’t handle the person and the detox system didn’t want them, these people ended up getting arrested. She found that persons with mental illness were arrested at double the rate of the non mentally ill for offenses such as disorderly conduct and trespassing. Since the police needed to resolve the situation, and the service system wouldn’t accept the person, arrest became a more common option.

Recently, Dr. Teplin has been involved with a major research effort framed by two key research questions: 1) What is the prevalence of seriously mentally ill people in jail? and 2) Do people who are mentally ill receive services in jail?

As detainees came through intake, they were randomly invited to participate in the study and be paid for a urine sample. The data is based upon a sample of over 700 men, almost 1300 women, and almost 1800 children (in an ongoing study). The study, based in Chicago, allows for generalizability because of the city’s diversity. Dr. Teplin’s handout included:

Demographic Characteristics of 728 Male Jail Detainees
Current and Lifetime Prevalence Rates of Disorders among Male Jail Detainees
Prevalence of Current Disorders among Male Jail Detainees by Race/Ethnicity
Prevalence of Codisorders by Presence of Severe Lifetime Disorder Among Male Detainees

• 6 percent prevalence rate for severe disorders (schizophrenia, manic episode or major depressive episode) within 2 weeks of the interview and a 9 percent prevalence rate over the men’s lifetime;

• higher prevalence rates for whites than non whites, a finding that was consistent across genders; Dr. Teplin hypothesized that whites who end up in jail may have more serious disorders and exhausted available supports.

• high rates of comorbidity of substance abuse/dependence (almost 90 percent)among individuals with severe disorders.

For the women’s study, Dr. Teplin and her colleagues used a stratified sample to get sufficient representation of ethnic minorities. Some of the study’s highlights about women included:

• 68 percent of sampled women had one or more children under age of 5;
• over 83 percent of sampled women tested positive for one or more drugs, typically cocaine;
• 18 percent had a severe disorder during their lifetime;
• prevalence rates of serious disorders were higher among whites; and
• 80 percent had one or more psychiatric disorders during their lifetime.

To measure whether persons with serious mental illness received needed services, the research team defined receiving services very broadly (seen twice by staff). The data revealed that only 23.5 percent of female jail detainees who needed services received them. The sampled women who were more likely to be identified as needing services had schizophrenia; the women who were least likely to be detected had major depressive disorders.

Dr. Teplin also shared some of the preliminary results from the juvenile study. Again, preliminary results show that the rates of serious disorders and co-morbidity seem very high.

Urinalysis Results Among Juvenile Detainees DSM-IIIR Diagnoses Among Juvenile Detainees Finally, Dr. Teplin proposed strategies for reducing unnecessary incarceration:

• train police
• designate a place that has a no decline agreement to take people with serious mental illness
• provide community services (housing, intensive case management)
• conduct routine screening at intake of jail
• divert to the mental health system
• design services in jail for people with comorbidity, specifically for kids, women and men
• provide a liaison with mental health system after releasem

Dr. Dvoskin: Treatment Programs for Persons with Mental Illness After Release from Jail

Dr. Dvoskin discussed t the few empirical studies on the use of community mental health services after incarceration and the resulting lack of evidenced-based objective criteria on treatment programs for persons with mental illness after their release from jail. He mentioned Hank Steadman’s longterm studies on diversion programs.

Mental health providers create barriers to people seeking treatment after incarceration. Ironically, when the person’s need is highest upon release, s/he is least likely to get services. Releasees must compete with those already on waiting lists for mental health services. In addition, many community residential programs are sold to communities on the basis that they won’t house criminals. This discrimination is a permanent obstacle for parolees who will always be convicted felons. While not empirically documented, parole and probation officers report giving up their efforts to obtain mental health services for their clients.

Systemic barriers also discourage serving people with serious mental illness in jail. There is a financial disincentive to serve people in jails as HCFA precludes paying for services that take place in correctional institution. However, as states block grant their Medicaid dollars, they will find it more fiscally possible to adopt more creative and effective strategies.

Dr. Dvoskin offered some core principles for effective programming for this population:

• Interagency effort. Every state that has effectively served this population has had an explicit interagency written agreement that holds people accountable, assigns duties and provides consequences. Some states have adopted "front door/back door" policies whereby the mental health system agrees to take all admissions referred by corrections while correction agrees to accept them back.

• Interagency effort matched with resources.

• Clear targeting of services and population served. Types of services and what period in people’s lives these services are needed should be defined. This explicit understanding is necessary to avoid arguments of who gets what and when they’re supposed to get them and accusations of "dumping" people by the system.

• Culture appropriateness. Ideally, staff should be from same culture. If not possible, managers should receive training.

• Use of progressive sanctions. Ironically, a person has a greater possibility of rearrest if are in treatment, which creates an impression that a person ends up being punished for participating in treatment. With progressive sanctions, staff can back up people the distance they need without automatically triggering rearrest.

• Create residential stability. Homelessness increases the likeliness of rearrest. Housing choices should be assessed individually. Often, providers assume that these people require congregate living while individual housing may be safer and more appropriate.

• Focus on relapse prevention.

• Effective parole officers. By training parole and probation officers, the mental health providers can create colleagues and partners instead of barriers and critics.

• Trained police so they don’t end up "overcharging" arrestees as a way to keep them off the streets.

• Availability of crisis beds and giving police first access to the beds so sending people to jail is not officers’ only choice.

• Low case management loads (no more than 10:1).

• Integrating treatment for dually diagnosed individuals (mental health and substance abuse).

Dr. Dvoskin spoke of the importance of intensive case management. In New York, when intensive case managers began working with population (without any forensic training), there was a 50 percent reduction in hospital stays and a 50 percent drop in jail days.

Finally, Dr. Dvoskin offered a framework for working with people upon their release from jail, including key questions:

• Ask people about the role of violence/other tragedies in their life;
• Make a list of these incidents starting from birth;
• Understand the person as victim as well as perpetrator;
• Inquire what s/he was thinking/feeling during the events;
• Ask what was going on around them during these events;
• Identify the obvious patterns of risk that emerge;
• Identify and teach these skill sets:
  • Do they have ability to identify a situation before they’re in it?
  • Learn how to avoid this situation entirely.
  • Learn how to safely escape (because failure is inevitable).
  • Understand the cost of failure (i.e., rearrest)

Dr. Luchins: Moderator’s Response

In Cook County, Illinois, administrators are able to download the daily census at the jail and identify the approximately 400 people in jail that are known to the mental health system. The County works through Thresholds to provide the linkage with these 400 incarcerated individuals.

Illinois also is setting up a mental health court to divert people from jail. Borrowing form the drug court model, Illinois is working through issues such as whether to deal only with misdemeanors (not felonies) as many courts do and whether to mandate treatment or just divert (as Broward County’s court does). An upcoming conference will bring together four judges to help design a system that is appropriate for Cook County.

During the question and answer period, presenters and participants offered the following feedback:

• Dr. Dvoskin urged participants to be dogmatic and inflexible about the size of caseloads. "Thou shall not exceed 12 clients." If caseloads do go higher he recommended not calling it intensive case management. He also questioned what happens when the client no longer needs that intensive level. The next available step might be supportive case management (20:1 ratio) which helps keep the intensive caseloads down.

• Dr. Teplin spoke about her surprise over the racial findings where whites were more disordered than minorities, which is counter to findings by race in other settings.

• In the experience of the presenters, the criminal justice staff were more zealous advocates for treatment than their mental health counterparts. Too often, the community mental health centers just shut their doors, leaving parole officers begging for treatment.

• In Rhode Island, the annual contract with the community mental health centers mandates that the cmhc follow-up with CSP clients when they are in jail. The cmhc also has a bail fund for CSP clients for minor nonviolent charges after intake.

• Dr. Teplin addressed the indicators of trauma in her study, particularly the high prevalence of post traumatic stress disorders. The researches ended up changing the wording of interview questions from "have you ever" experienced various trauma to "how many times." The rates of these disorders among girls is higher, particularly sexual/physical abuse.

Dual Diagnosis (Mental Illness/Mental Retardation)

Moderator:
Alan Radke, MD, Minnesota Medical Director

Presenters:
Frederick Ferron, MD
Clinical Director
Southern Cities Community Health Clinic
Faribault, MN

Cynthia Kern, Pharm.D., B.C.P.P.
Pscy Pharm.D. Clinician
Department of Community Health Clinic
Faribault, MN

Dr. Radke opened the session by explaining Minnesota’s unique experience in serving persons with mental illness and mental retardation. In 1987, the state decided to close all the state hospital developmental disability beds and place people with developmental disabilities in the community. This process of putting one client at time into the community will be completed shortly, after 13 years. One inpatient option remains, Minnesota Extended Treatment Options, a 48 speciality-bed setting for people with developmental disabilities and behavioral disturbances that pose public safety problems. These clients typically stay for a year and then return to the community.

In conjunction with the process of placing clients in the community, Minnesota also addressed the lack of community providers who would treat individuals with mental illness and developmental disabilities. To ensure individuals could access medical care (including psychiatry and dental care), the state established two community clinics in the early 1990's. Southern Cities Community Health Clinic, where the presenters work, has a current case load of 330 persons with developmental disabilities and mental illness and a history of over 15,000 patient contacts. The Clinic has enhanced Medicaid reimbursement mechanisms, receiving a 20 percent increase over normal Medicaid levels for services.

Dr. Ferron: Review of Past Practices and the Psychiatric Literature

In Minnesota, the Faribault Regional Center was a state hospital that began treating people with mental retardation in the 1800's. In 1955, the Center had a peak population of 3300. Given the 1987 decision to downsize and close the hospital, former residents now live in small group homes. Dr. Ferron stated that, having seen patients in both settings, most patients do better in smaller settings.

While reviewing the psychiatric literature (see REFERENCES), Dr. Ferron commented that there is still so much the field doesn’t know. However, he challenged participants to utilize the knowledge base that exists, admit what isn’t known and apply what is known to improve the quality of life for persons with mental illness and developmental disabilities.

Dr. Ferron highly recommended Frank Menolascino’s work and his discussion of the challenge of diagnosing mental illness among people with developmental disabilities. What is truly a psychiatric symptom versus what might be expected from person with significant mental retardation?

Dr. Menolascino distinguished between atypical, abnormal and primitive behaviors. Primitive behaviors consist of rudimentary use of special sensory modalities (e.g., touch, oral exploratory, sudden verbalizations, skin picking, body rocking); he warned that these behaviors should not be labeled as psychosis. Atypical behaviors may only be atypical because of the setting that these individuals are in. Individuals who present with truly abnormal behaviors may be presenting with mental disorders. In this case, psychotropic medications might be used in order to give the person a better quality of life.

In the literature, doctors offered additional opinions on the use of psychotropic medications:

• Ferguson urged caution with using neuroleptics, commenting that such medication may not actually reduce inappropriate behaviors but may interfere with responding to reinforcing contingencies. However, Ferguson did say, if clearly indicated, medications should be used.

• As written in his 1982 article, Gueltieri found that very few of patients really needed to be on neuroleptic medication. When the medication was withdrawn, there was no great change in individuals’ behavior.

Dr. Ferron commented that psychiatrists are being pressured to come up with treatment plans that will allow the person to stay in community. In the early 1980's, treatment teams often wanted psychiatrists to eliminate or reduce medications. Teams today don’t seem to want reduction in medications, fearful that such change might jeopardize a person’s community placement. He reiterated that the ultimate goal of psychotropic medications and other treatment options should be to improve the person’s quality of life.

Dr. Ferron recommend the Psychiatric Consultation Questionnaire for Persons with Developmental Disabilities used by Sovner and his colleagues. The instrument obtains family history, referral for care, causes of mental retardation and assists with formulating the mental status exam.

Dr. Ferron maintained that reviews of the Mental Status Exam are under represented in the literature. He has found that care givers can often assist with the mental status exam, sharing their observations as to whether the client has exhibited depressive issues, changes in interests, changes in activities of daily living (ADL) or sadness.

Dr. Kern: Psychopharmacology in Dual Diagnosis (MI/MR)

Dr. Kern stated that the full range of psychotropic agents are used at the Southern Cities Community Health Clinic: anitdepressants, mood stabiliizers, antipsychotics, antianxiety agents, stimulatnts, beta blockers, clonoadine, guanfacine, meltraxil and herbals. She referred Medical Directors to 1999 data by Kessler, but also observed there is not much good sound research on persons with mental illness and developmental disabilities.

For people with mental illness and developmental disabilities, Dr. Kern also pointed out:

• Clients with developmental disabilities are very medication sensitive. Thus, clinical staff start dosages off very low and proceed slowly.

• Any medication that causes a decrease in cognitive ability can greatly affect a person’s functioning and quality of life.

• Since a larger percentage of clients have seizure disorders, clinical staff work closely with a neurologist to come up with the most appropriate treatment plan for each person and prevent drug interactions, toxic effects, and loss of seizure control.

Antidepressants

Most commonly, staff use the newer anitdepressants. SSRI’s are the first choice for suspected depression and to treat symptoms of anxiety, panic, OCD, aggression, anger, self injurious behaviors (SIB) and impulsive behaviors.

Clinical staff prefer citalopram and sertraline over other SSRI’s because they have less potential for interacting with other drugs, such as anti convulsants. The usual dose of citalopram is 10 mg and the person might stay there for few weeks. Clinical staff tend to not use Fluoxetine because of its long half life and its longer wash out time. Paroxetine is used a frequently because it doesn’t have sigfniciant drug interactions. If first the SSRI’s are ineffective, clinical staff may try a second or third SSRI, depending on the side effects experienced by the person.

For suspected depression with significant anxiety and agitation, Mirtazapine may be used, with a starting dose of usually 7.5 m.g.. Side effects associated with Mirtazapine include anticlinergic activity and urinary retention and constipation, a potential problem for people on multiple medication regimens.

Trazodone is used when a person has sleep disturbance and significant agitation and anxiety. Evening doses are helpful if there is a sleep disturbance.

If priaprism is used, clinical staff inform family and care givers about the rare side effect in males and necessary monitoring and response actions.

Clinical staff have found buproprion to be a very good antidepressant for depressed people with low energy or who want to stop smoking. The sustained release form doesn’t have the seizure potential that regular acting buproprion can have. However, they don’t use a lot of buproprion because of the lowered seizure threshold associated with it in the past.

Clinical staff occasionally use venlafaxine for depressed and anxious patients, more lately since the extended release dosage form came out. Hypertension can be a side effect so staff are instructed to monitor the patient’s blood pressure regularly and more frequently during the dose tritation period.

Mood Stabilizers

The use of mood stabilizers is a prevalent at Southern Cities Community Health Clinic. Clinical staff most often choose valproic acid because it works well, has a wider therapeutic range with less potential for developing toxicity, has a better side effect profile with less CNS depressive effect. Since a high percentage of clients also have seizure disorders, clinical staff coordinate treatment with the neurologist. Monitoring lavatory occurs every 6 months rather than every the 3 months needed with lithium. Valproic acid can also cause significant weight gain.

In the case of significant obesity, carbamazapine may be better choice. However, clinical staff tend to avoid carbamazapine because of its greater potential for interacting with other drugs. The medication can speed up elimination of other hepatically metabolized drugs (such as antipsychotics), thus lowering their effectiveness.

Lithium tends to lower the seizer threshold for people. With lithium, there are frequent complaints of polygipsia, urinary incontinence, sedation, lack of energy and cognitive blunting. Overall, the drug seems to decrease the patient’s functioning level.

In addition to obvious bipolar manic disorder, val proic is useful for treating agitation, SIB, anxiety, aggression, impulsive behaviors and associated symptoms with personality disorders.

Antipsychotics

Given this population’s vulnerability, clinical staff strive to use the minimum dose necessary for each individual and repeatedly document and justify the need for prescribing ongoing antipsychotic medication.

Clinical staff use antipsychotic agents to treat mood disorders that don’t respond to conventional treatments, agitation associated with psychotic symptoms or extreme agitation or aggression that require prompt medication.

Dr. Kern has not observed any marked benefit of treating mood disorders with the newer anticonvulsants (e.g., lomotrogine, neuronton).

Clinical staff prefer newer atypicals antipsychotic over typical neuroleptic. It is difficult to diagnose or rule out psychotic disorders in patients with severe or profound developmental disabilities. In such unclear cases, if an SSRI or mood stabilizer are ineffective for treating agitation, aggression, SIB hyperactivity, dangerously impulsive behaviors, clinical staff may select a trial of an atypical psychotic.

Quetiazpine has not been as useful with this population as olanzapine and risporidol. When Quetiazpine is used, clinical staff order baseline eye exams due to the cataract warnings associated with the drug. Another difficulty is the possibility of significant orthostatic hypertension (requiring frequent blood pressure monitoring especially as tritate up dose). An advantage of quetiazpine is that it is not associated with weight gain (as are clozapine, olanzapine and risperidol) and it does not increase levels of prolafitn.

Clozapine is reserved for patients with treatment resistant psychotic or bipolar disorders or with tardive dyskanesia.

Typical antipsychotics are sometimes used. However, clinical staff try to avoid prescribing them as some patients have been on typicals (clorpromizine, haldol or thyratizine) for decades and it’s unknown what those medications have done to their receptors after drug holidays and then being blasted with new regimens.

Antianxiety Agents

As a general antianxiety agent, Dr. Kern recommended bupirone as the safest and least invasive medication for patients with mental illness and developmental disabilities. Bupirone doesn’t cause many side effects and it works well for a number of patients, especially as augmentation treatment with SSRI to treat anxiety and OCD symptoms. Bupirone can increase agitation at its higher doses or with dosage increases. Also, frequently the medication doesn’t work.

For anxiety associated with depressive symptoms, clinical staff usually choose less stimulating SSRI’s and metazapine.

Benzodizadpines can be disinhibiting with this population and can cause more difficult behaviors. In addition, Benzodizadpines have addiction potential, when used routinely. When there are decreases in dosages, patients typically increase problem behaviors before they stabilize. The benefits of taking a person off routine doses of Benzodizadpines may include increased cognition, more personality, higher functioning and improved behaviors. Benzos are reserved as PRN for agitation or HS for sleep. When Benzodizadpines are use, lorazepam is usually chosen because it is fairly short acting, associated with fewer interactions, inexpensive and available as oral tablets, liquid and injectable.

Clinical staff seldom use stiumulants with this population because adults with developmental disabilities frequently present with symptoms of anxiety and agitation. It is not uncommon for many adult patients to have had unpleasant histories of taking stimulants as children.

Clinical staff have not found a niche for beta blockers, although the literature suggests that they are effective for treating aggressive behaviors in people with developmental disabilities. They have tried propranolol but the results have been unclear. propranolol can cause depression, increase cholesterol, low blood pressure and slowed heart rate.

For people with resistant self injurious behaviors, Naltrexone has been tried, particularly when there’s significant self injury or the patient seems driven. Sometimes the medication has been helpful, sometimes not. Dr. Kern recommended checking liver function tests from time to time when Naltrexone is used as patients usually are on other hepatically metabolized drugs.

Cytochrome p450 Drug Metabolism and Interactions

Dr. Kern warned about drug interactions, including some that might require the patient’s hospitalization:

• Antipsychotics are notorious for causing drug interactions with other drugs.

• Mood stabilizers cause common interactions.
• Depakote can cause significant sedation used in combination with clozapine, phenobarbial, benzodiazepines, lamotrigine.
• Carbamezapine increases metabolism of other drugs, possibly making those other drugs ineffective.

Dr. Kern summarized her key points:

• SSRI’s and the newer antidepressants are the most useful.

• The mood stabilizer of choice is valproic acid .

• Staff avoid tryclinics, MAO inhibitors and older typical antipsychotics.

• When people are on the typical antipsychotics, staff try to switch them to newer atypical antispychotics.

• Staff aim for the minimum effective dosages and decreases in antipsychotic medications whenever possible.

• Staff simplify medication plans to avoid additive anticolenerginc effects that can significantly decrease cognitive and quality functioning.

• It is more important than ever to have qualified clinicians involved in monitoring drug therapies as new drug interactions are documented every day and patients have access to more over the counter agents.

Dr. Ferron: Policy Challenges to Clinician Executives

To improve the services for people with mental illness and developmental disabilities, Dr. Ferron urged Medical Directors to:

• Seek out and develop training opportunities, particularly through links with the university system.

• Establish reasonable documentation standards for clinicians who treat people with mental retardation.

• Network better and obtain consultations with clinicians who are working with this population.

• Explore the possibilities of telemedicine. Dr. Radke explained that Viacom units cost less than $10,000 and operate through the telephone system. The Viacom units provide high quality, real time pictures and can be reimbursed through Medicaid dollars.

Finally, participants discussed the opposition to and distrust of psychiatry within the developmental disability field. One strategy to overcome this divide is to acknowledge the astounding success that the DD community has had in improving people’s quality of life in non-medical ways over the last 30 years. Administrators can tap into the rich resources within the DD community and ask for their help in addressing some of the issues also faced the mental health system.

Recovery

Moderator:
Anne Bauer, MD, Maine Medical Director

Presenters:
Mary W. Asulander, MSW
Social Work Supervisor
DMHMRSAS
Augusta, ME
Ronald J. Diamond, M.D.
Department of Psychiatry, University of Wisconsin
Medical Director, Mental Health Center of Dane County
Madison, WI

Dr. Bauer briefly discussed the impact of recovery concepts on psychiatric services. While more definition and increased knowledge is still needed, the recovery and consumer movement provide important concepts for treatment. Dr. Bauer asserted that "recovery" and "best or exemplary practices" may be the two most important concepts in public mental health. How do those two ideas come together?

Mary Auslander: Why Recovery Is Important to Mental Health Consumers

Ms. Auslander relayed her personal and professional opinion of the most damaging aspects of inpatient psychiatric care:

• degree of isolation experienced by a person, both socially and internally, that leads to more complications and a longer road back.

• increased self loathing. Ms. Auslander felt that her abilities to learn, grow, be educated, be loved were permanently impaired as a result of hospitalization.

• dismissal or lack of understanding by professionals that she, as a consumer, had a different point of view. As a result, she learned not to disagree with professionals. However, this ability to have a perspective is a key ingredient for healing.

Over her years of recovery, Ms. Auslander worked with the same competent professional who believed in her, which helped in her recovery. She cited the importance of recovery’s relational component, which is essential to all humans’ well-being.

She highlighted other key milestones in her recovery journey:

• After about 5 years, she undid the damage of being diagnosed and hospitalized by beginning to unravel the importance of past sexual abuse which brought her to the door of the mental health system.

• Ms. Auslander took a stand and committed her self to herself when she made an anti-suicide pact. She also had to reorient herself to the range of "normal" and learn to interpret her emotions as something experienced by everyone periodically versus always being a pathological symptom.

• She was able to go at her own pace, encouraged to take risks and not condemned when mistakes were made.

• She benefitted from a mix of insight-oriented and cognitive/behavioral tools during a very gradual process.

• She had a sense of being treated in partnership.

Ms. Auslander shared handouts from consumer survivors who are shaping the knowledge base about recovery: Recovery Advisory Group’s Recovery Model A Work in Process May, 1999 and Recovery by Ruth O. Ralph, Ph.D. Plenary Presentation at the 38^th Annual Southern Regional Conference on Mental Health Statistics, September 23, 1996. Finally, Ms. Auslander urged Medical Directors to:

• recognize the truth of people’s history and what leads them to look mentally ill (such as the prevalence of abuse).

• not be afraid of being their full human self with consumers and be honest about why they sometimes can’t.

• believe that recovery is possible. It is the key.

Dr. Diamond: What’s So Important About the Concept of Recovery?

Dr. Diamond asserted that the traditional approach to mental health services and case management is that the person is so swaddled in services that they can’t fall and hurt themselves. The Canadian Mental Health Associations offers a recovery oriented model that supports but does not surround the consumer. The consumer is still firmly in the middle but professionals don’t talk about residential services, they talk about housing. Vocational services aren’t the focus but helping the person get a job.

Traditionally, once a person is diagnosed, s/he becomes a walking diagnosis. Society simply sees the person as just schizophrenic. The process of recovery shrinks this perception so that the disorder becomes a smaller part of the person. The rest of the person is comprised of play, work, friends, family - all the things shared by most people.

The term "recovery" comes from different traditions:

• Alcohol and Other Drug Abuse field (AODA ) where recovery involves a life-long process, short term long germ goals, symptom management and relapse prevention. Many ideas about mental health recovery come from this tradition.

• Quality Assurance where government mandates indicators to ensure quality of service from managed care.

• Consumer Survivor movement in which marginalized people achieved power through their collective anger and focusing on rights and civil liberties.

• Psychiatric Rehabilitation Approach where recovery is part of the lived experience of overcoming disability (Pat Deegan 1988). Professional expertise and rehabilitation (skill training, crisis planning, work support) can help the recovery process.

Dr. Diamond offered additional thoughts about recovery:

• Recovery is not the same as cure. For example, a person who has spinal cord injury can develop a new life (with adapted job, apartment and car) although his disability may never be "cured."

• Recovery is having more to life than illness

• Recovery is a process, not a destination.

• Recovery is both done and defined by the person

• Recovery is non-linear. People don’t improve a bit every day. Recovery is an up and down process. If we expect incremental improvement every day, we get frustrated.

Assumptions about recovery include:

• Recovery is highly individualized.

• Recovery can occur in the presence of psychotic symptoms.

• Recovery from the stigma of mental illness is sometimes more difficult than recovering from illness itself.

A study out of Brisbane, Australia specified factors considered most important by consumers to their recovery:

• Determination. People recognize enough spirit in themselves to continue fighting.
• Illness management. Consumers learn how to control and monitor their own symptoms.
• Self help. People own their choice to get well.
• Having friends who accepted them
• Negative effects of medication
• Negative effects of health professionals
• Accepting the illness/accepting responsibility for behavior
• Crisis response as part of the process. People can anticipate crises and take responsibility.
• Struggling with their ability to recover. The importance of hope - and remembering what life was like before illness struck - is critical and recovery. As necessary, people around the person hold on to this hope until the person is ready to take it back. Professionals can increase or retard the process of recovery by virtue of how they hold onto hope.

What are the limits to a recovery approach?

• When a person says s/he doesn’t want anything. When people say they doesn’t want, it means they can’t trust or are too frightened to say that something is wanted. Professionals need to understand how risky it is to want. Wanting something and failing is worse than not wanting at all. Yet, everybody wants something. Professionals have to encourage people to want - and grow.

• Risk to the person is too great. Many people engage in risky behavior. Staff smoke. What types of risks are we willing to engage in our life? Let’s get specific and clear about what the risk is. What are the environmental contexts that lead to risky behavior?

• Risk to others is too great. What is the risk? To whom? What can we do to decrease the risk? How can we balance long term versus short term risk. What risk are we really able to tolerate? If we can’t tolerate, let’s talk about it with the patient. If the person is put in the hospital, risk is decreased right away but, in the long run, risk may increase (increase in lethality, increase in maladaptive mechanisms).

• Burden on community is too great.

How do professionals start connecting with someone who doesn’t want what is offered? The primary skill of mental health professionals is connecting with someone who is difficult to connect with. If they weren’t difficult, they wouldn’t be paying professionals to connect. How do professionals connect with consumers on their terms?

When offering alternatives to consumers, what range of options are available? The more options offered, the more likely a person will avail themselves. In Wisconsin, if someone needs a different placement, they can go to a hospital, state hospital, hotel room, bed in someone else’s home or crisis home.

What does "doing better" mean? Very often it’s defined as being less psychotic. Dr. Diamond stated he cares less about psychotic symptoms and more whether those psychotic symptoms are causing stress. Clinicians often end up tracking things that seem like they’re important from their perspective but don’t really impact a person’s quality of life. The purpose if medicine has to be to increase a person’s quality of life along his or her personal goals.

Important characteristics of the treatment relationship include:

• Being tenacious. Keep going out over and over. Hang with people who have no reason to trust professionals.

• Going to where the patient is physically and psychologically. Don’t talk about medication until you understand how it fits into the context of a person’s life. Often professionals have patients come to their office, where the professional is most comfortable. Professionals need to be more flexible.

• Helping people discover their own goals. Inspire and instill hope. If your system doesn’t start off by asking, ‘What is your goal? How can I help you get there?’, you’re part of the problem, not the solution.

What is included in treatment? Dr. Diamond urged defining treatment not by what the system is used to giving but by what the person needs. If the person’s goal is to get a job, the professional’s job is to help you get a job with his or her clinical skills.

Dr. Diamond spoke of the contradiction of coercion within a recovery framework. A fundamental conflict exists when the system forces clients to do what is thought to be best and then encourages clients to take control of their own lives. Coercion changes the treatment relationship from collaborative to controlling. Indeed, coercion exists on a continuum, ranging from persuasion, bribery, pressure, control of resources to involuntary treatment. As clinicians move up and down the continuum, people will act as if they’re coerced. Clinicians need to acknowledge such coercive tactics when they end up using them.

Finally, Dr. Diamond summarized treatment that supports recovery. Such treatment involves:

• working toward the goal of improving a person’s quality of life

• having a collaborative relationship

• starting from the client’s own goals

• taking a long term rather than short term view

In her response, Ms. Auslander commented about the need to look at the role of poverty in trauma in both diagnosis and treatment of public mental health clients. A discussion ensued about the conflict between medicalizing illness versus seeing illness as social phenomenon. One reason illness is medicalized is to obtain disability and other benefits offered by society. How do we move away from a system that only gives benefits to people with illness? If a person is just homeless, the system may not have any special clout to get them housing. If a person has a mental illness, there may be strings to be pulled, programs to be accessed. This dilemma also is a social policy issue - the deserving verus the undeserving poor.

One participant observed that the need for a "long term" view also applies to system change. Systems change doesn’t occur with the first declaration. Understanding the long-term nature of change helps everybody tolerate missteps, shortcomings and failures along the way during system change efforts. In Madison, major systems change has occurred over 25 years. The change momentum continues, despite people changing jobs, because no one person carries the change culture.

Dr. Hester asked what state hospitals could do to be more in tune with recovery? Ms. Auslander responded that they could reorganize and become a place of true asylum and reorganize. She found that there’s a distinct lack of treatment occurring in state hospitals due to lack of training and lack of funding. Dr. Diamond believed that hospitals are going to have a more narrow role. Hospital stays are going to be very focused to achieve specific ends in a short time - more like intensive care units. The hospital’s job would be to handle people with such out of control behavior or with such technological requirements that they can’t be handled in any less intensive place. Then, if a person needs longer respite, the system should develop other structures that are likely to be healing.

The topic of employing consumers in state hospitals and other SMHA positions was discussed. Dane County actively seeks consumers in community direct line mental health services. The county also has consumer aids, people who don’t have formal education qualifications, but connect and work with consumers directly. Dr. Diamond contended that working with consumers humanizes the system. It’s hard to hold negative, stigmatizing sense of schizophrenics when your colleague is "one of them."

Ms. Auslander mentioned a successful federally funded study at Bronx State Psychiatric Center where consumer/survivors were trained as intensive case manager assistants for people going in and out of state hospitals. In New York, the study led to the creation of 35 peer specialist positions with civil service status.

Finally, the group discussed the need for training. Dr. Diamond observed that psychiatry training doesn’t broach recovery. In Dane County, staff participate in workshops and meetings on recovery - with consumers present. Some meetings are held in people’s homes, causing staff to rethink what boundaries are all about. Ongoing training must involve new and existing staff. Ms. Auslander added that training must include a component on staff’s self awareness. Providing such forums is one of the most solid ways to bring about attitudinal change and promote recovery.

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