Barbara L. Ludwig, LPC, Kerrie R. Seeger, MD, Gail Thaler, MD, Braulio Montalvo, MA, Jill Blacharsh, MD
In an age of managed care, specialized health care needs for people with developmental disabilities, including psychiatric needs, are often assessed and coordinated by a primary care physician. Primary care is the provision of integrated, accessible health care services by clinicians who are accountable for addressing a large majority of personal health care needs, developing a sustained partnership with patients and practicing in the context of family and community. (Institute of Medicine, 1996). Grounded in a foundation of primary care philosophy, the Family Medicine and Psychiatry Departments at the University of New Mexico share resources to create a flexible hub for two transdisciplinary clinics serving people with developmental disabilities and complex support needs, including mental health needs. In 1993, the New Mexico Department of Health and the University entered into a Joint Powers Agreement to fund the project, which provides evaluations, consultative services, training and research activities. Prior to receiving specific funding, program development activities had consisted of collaboration among interested faculty in the departments of Family Medicine (Kerrie Seeger) and Pediatrics (Javier Aceves), the University Affiliated Program (Meave Stevens Dominguez and Barbara Ludwig) and a community program, Specialized Behavioral Support Services (Carol McFall). Program development activities included statewide needs assessment, onsite and ongoing study with Ruth Ryan, (representing the very successful Behavior Pharmacology Clinics in Colorado), mission, workscope (outcome-based goals and objectives) and budget development.
A primary, continuing goal of the project is to provide a presence in the departments of Family Medicine and Psychiatry which models bridge-building and partnering with community-based programs and health care providers. Project activities increase consumer access to quality health care in an era of deinstitutionalization (Minihan, 1986) and are designed within a values base which enhances the potential for successful implementation of the new system of comprehensive managed care currently being introduced to Medicaid recipients in New Mexico (Pew Commission, 1995). The presence of the project within a medical school provides faculty with a mandate to and varied opportunities for training medical students and residents in the multivariate issues related to caring for persons with developmental disabilities. Building on successful models of state-university partnership, (Neligh, et.al., 1991, Ryan, et al., 1991), the philosophy, implementation methods, challenges, early results and thoughts on future directions will be discussed.
The Transdisciplinary Evaluation and Support Clinic (TEASC) travels to Albuquerque metro area and underserved, geographically isolated rural communities to offer outreach evaluation, consultations, formal recommendations and follow-along to individuals with developmental disabilities, their families and their own interdisciplinary planning teams (IDTs); often meeting in the focus persons own home. The paucity of comprehensive services in rural communities is addressed through the demonstrated practice of exporting a team onsite (Magrun, 1982).
The core team from TEASC consists of a family practice physician, psychiatrist, behavioral/systems counselor, and family therapist. Medical students, residents and guest faculty are included whenever possible. Specialists from a contract consultant pool may be added to the team depending on the referral issues. The consultant pool has included advocates, interpreters, mental health workers, occupational, physical, and communication therapists, a behavioral neurologist, a social worker, and a neuropsychologist.
A related program, the Adult Special Needs Clinic (ASNC) is funded within the core TEASC Joint Powers Agreement and is comprised of the TEASC team and members of the Continuum of Care Project, a developmental disabilities medical resource development program coordinated by Jennifer Thorne-Lehman, also located within the Health Sciences Center. The ASNC is enhanced by physician and community program volunteers and contractors representing neurology, developmental pediatrics, psychiatry, social work, consumer advocacy and allied health therapies. This clinic provides an easily accessible, call for appointment, clinic-based transdisciplinary consultation to address potentially less complex referral questions than would presumably be addressed by a home-visit TEASC evaluation. When presenting concerns prove too complex to be resolved in the Adult Special Needs Clinic, the individual can be referred for a TEASC evaluation.
TEASC referral questions range from general to specific, in a wide variety of medical, behavioral and situational areas. The TEASC clinic intake coordinator works with the referral source to clarify the current issues to be evaluated and to collect detailed and relevant background records and information which is meticulously reviewed by the team prior to the evaluation meeting.
Innovation in the project design is characterized by:
1. Values and practice which model systemic and interpersonal collaboration and partnerships from person-centered and family-centered perspectives.
2. Use of assessment and diagnostic paradigms which address the whole person in relation to other people and their environmental contexts, and which enhance and strengthen traditional interdisciplinary team approaches.
3. Education and training for medical students and residents, allied health providers, community program providers and direct support providers including family members, through specialized curricula and hands-on, participatory practice and mentorship.
4. Dynamic interspecialty dialogue and cross-training among health, mental health, social services, residential, school, work and administrative support providers.
5. Methodology and outcomes research-in-progress which produces epidemiological data and evaluates intervention effectiveness and satisfaction of consumers, competencies attained by trainees, satisfaction and morale of clinician-participants and comparative intervention cost effectiveness.
The University of New Mexico clinics core team members work to assure participation by the focus person, as well as by the case manager, providers who know the person well, family members and close friends whenever possible and desired by the focus person. It has been observed that clients are typically invited to attend team planning meetings held in their behalf, but these meetings are often characterized by a tone of formality and pressure to get much accomplished within a brief period of time and in the inevitable absence of some of the key players. Such meetings may be structured so that there is little time or opportunity for the essential work of setting a comfortable, validating and welcoming tone which truly invites the participation of the focus person and the persons key direct service support staff, expectations of which form the heart of the TEASC values base. When a TEASC evaluation is scheduled, the focus persons own primary care physician, psychiatrist and/or other key providers from non-DD specialized community services are invited, as the teams seek to support rather than supplant community-based resources.
As the evaluation meeting wraps up, diagnostic impressions and recommendations are presented wholistically, and are initially summarized verbally, with all participants invited to comment. Finally, a single, transdisciplinary written report is generated by a designated core team member (a shared responsibility) which is reviewed, refined and signed by all core team members prior to distribution.
After the evaluation meeting, either the core team will initiate scheduling future contacts to refine and assess implementation of recommendations, or responsibility for initiating follow-up contacts will be delegated to the focus person, case manager, program staff or family member, depending on the situation and anticipated future needs. The TEASC Evaluation Follow-Up Survey is beginning to be utilized to interview the focus person and other key informants six months to a year after the initial evaluation. The survey contains standardized and open-ended questions which address both the persons current overall quality of life and results of implementation of recommendations. It also incorporates questions measuring consumer satisfaction with the service and solicits suggestions for improvement.
Characteristics of the Population Served
The population served by the TEASC (in home) and ASNC (in clinic) teams include people with developmental disabilities and complex needs, frequently including medical, mental health and behavioral support needs, referred by any source. Common untreated medical conditions encountered by the New Mexico teams and others (Beange, 1995) include chronic pain from poor dental hygiene, sinus and migraine headache, musculo-skeletal conditions, self-inflicted or perpetrator-inflicted injuries and gastrointestinal disorders or irritation. Multiple medication regimes may result in drug interactions and side effects which in turn cause health problems and discomfort. Medication blood levels, thyroid functions, liver functions and vitamin levels are inconsistently monitored within the population, and are routinely addressed within the TEASC/ASNC process. Non-psychiatric medical conditions can and often do have psychiatric and behavioral symptom significance.
Many individuals receiving TEASC or Special Needs Clinic evaluations do not use spoken communication. The core evaluation team is experienced in adapting investigative (interviewing and observation) techniques so as to maximize the amount of accurate information gathered during the evaluation process. In the Family Practice Center-based Adult Special Needs Clinic, it is necessary to address the needs of many adults with developmental disabilities who have previously had scary and painful encounters with medical and dental care providers, or may react negatively to novel environments (such as a busy doctors office or clinic). Team members are encouraged to emphasize the following:
1) Intensively attending to body language, physical appearance, affect, energy level and other non-verbal communication offered by the patient. (The development of non-verbal assessment skills associated with increased exposure to treating patients with developmental disabilities has led psychiatry residents at the University of Colorado to comment that such training has generalized to a self-perceived improvement of assessment skills applied to all populations [personal communication, Ryan, 1997]).
2) Use of clear, concrete and honest communication directed to the patient regarding what is happening and why.
3) Modified desensitization process (slow, progressive introduction to medical instruments and procedures (for example letting the patient hold and check out the blood pressure cuff before it is applied).
4) Identification through discussion with the patient and care staff or family of and use of preferred, (positively reinforcing) edibles, drinks or activities which can be promised and delivered immediately following the appointment; to begin to establish, in combination with the above approaches, a more positive overall medical experience.
Diagnosing Psychiatric Disorders
The term dual diagnosis in this context describes people with developmental disabilities and psychiatric disorders. The full range of psychiatric disorders can be diagnosed using the American Psychiatric Associations Diagnostic and Statistical Manual (DSM-IV) guidelines, possibly with the exception of those individuals with the most profound mental retardation (Reiss, 1993). Many DSM criteria are written in concrete, behavioral terms, can be easily observed by others, and do not need adaptation (e.g. disturbed sleep, weight loss/gain, cycling behavior). Some criteria are more subjectively reportable (e.g. hallucinations) and require assessment process adaptations which accommodate the persons preferred and most effective modes of communication (Ryan, 1994, Sovner, 1989). Utilizing wholistic, comprehensive assessment approaches, it is apparent that the most common psychiatric disorder among people with developmental disabilities currently is depression. Archived record reviews of previously institutionalized persons in New Mexico referred for TEASC evaluation who received a unilateral psychiatric assessment, indicated a preponderance of erroneous, non-specific psychotic disorder diagnoses in psychiatric reports, which were typically treated with sedating neuroleptic medications.
Why Do Whole Person Teaming?
Psychiatric and other medical care for people with disabilities has long been thought to be more effectively and efficiently delivered in a setting utilizing a team approach (Hutchison, 1978). People with complex support needs require complex assessment approaches (Ryan, 1991). Biological, psycho-emotional, social and contextual (relevant relationships, situations and environments) elements contribute to the overall functioning of all people. Whole person evaluations avoid compartmentalization and acknowledge the overlapping and interconnected aspects of healthy and satisfied everyday functioning.
Evolution of the Transdisciplinary, Whole Person Evaluation Approach
Independent professional assessments may have narrow perspectives which are communicated in specialized jargon. Teams are more likely to address broader issues and minimize incomprehensible language. Teams deal with internal conflict, which arises naturally within any complex system. Team process can mirror the wholistic nature of the person being assessed and can be expected to produce synergistic results (Yank, et al., 1992). Whole person assessment is person and family-centered, non-standardized but structured, clinical, yet flexible. Core team members get to know each other well, learn collaborative ways of problem-solving and learn to interact intuitively and in an integrated fashion.
Teaming is evolving to meet ever more complex individual needs and dramatic systemic changes. The unidisciplinary patient assessment has been traditionally used in medical settings and involves individual provider service delivery. Multidisciplinary approaches are typically psychosocially focused and are incorporated into a parallel service delivery paradigm. In these approaches, a variety of disciplines may be represented in a serial, add-on fashion, and specialty assessments are typically gathered and collated by a team coordinator. Interdisciplinary teamwork is characteristically psychoeducational and cooperative (Foley, 1994). Information sharing and other interactions are more direct, but distance between specialties and specialized jargon are retained. The transdisciplinary approach in evaluating people with developmental disabilities and mental health needs addresses biopsychosocial issues and is integrative in function. In the transdisciplinary approach, disciplines include clients/patients, family members, direct support providers, case managers and anyone who knows the focus person well. A definition of transdisciplinary is that it implies a transfer of information, knowledge and skills across disciplinary boundaries (Hutchison, 1978). In a transdisciplinary assessment team, members are cross-trained in others disciplines, formally and informally. Jargon is reframed into common language or carefully explained. Person-centered interaction and person-first language is utilized. Egalitarian interaction among all participants is expected and supported. Meddling outside ones own specialty is encouraged. Role release and role expansion are endorsed so that implementation of specialized recommendations becomes everyones responsibility.
Effectiveness of Transdisciplinary Team Evaluations
How effective are transdisciplinary teams? Demonstrated outcomes and cost effectiveness are documented in few studies. Many professionals embrace the model as a function of common sense because they feel inadequately trained to address such complex issues alone, and because of excitement about the synergistic hypotheses and conclusions which are often drawn (Ackerly, 1947). Cost-benefit analyses must be done longitudinally. One three year study suggested that a group of elderly people living in the community who received an annual comprehensive team assessment in their own home, had a significantly lower need for in-home assistance in performing daily living activities, and had a lower rate of admission to nursing homes than controls. There was an increased use of primary care physicians and an estimated cost of about $6,000 for each year of disability-free life gained (Stuck et al., 1995). In contemplating a cost-benefit analysis, investigators would want to assemble an exhaustive list of all the expenses incurred to the system, directly and indirectly, when wholistic treatment is not provided and the focus person typically continues to lurch from crisis to crisis, requiring extensive intervention and reparation-related expenditures.
Challenges in evaluating outcomes of team consultative interventions include difficulties in controlling for complex interacting and confounding variables, resistance of primary providers to embracing the hypotheses of outside experts which can sabotage the potential for positive outcomes, the fact that consultation doesnt necessarily lead to recommendation implementation, and the need for follow along and technical assistance by consultants, which is rarely adequately funded. Outcomes that are typically important include quality of life changes such as improved health, decreased behavioral disturbances and increased impulse control, increased choices/opportunities in everyday life, increased control of money, schedules, etc., increased satisfaction with relationships, and increased participation in work, school, leisure and recreational activities. Quality of life outcome measures can be correlated with implementation of recommendations, expressed through subjective indications of self satisfaction, and expressed through changes in types and degrees of needed supports. For a clear, well organized outcome study within which team evaluation recommendation implementation and quality of life elements are statistically analyzed within a large n, the reader is referred to Dr. Ruth Ryan at the University of Colorado, Department of Psychiatry.
Outcomes for Support Staff Participants
It has been observed that there may well be positive outcomes for direct service staff who are involved in person-centered, transdisciplinary evaluations, as well. For example, a 25 year old man, whom we shall call Miguel, was the focus person of a recent evaluation which took place at a large, but downsizing ICF-MR institution located in an isolated rural setting. Miguel was on the list to transition out to a community placement. Miguel lived in a concrete and linoleum ward in the company of 35 other men, all of whom demonstrated aggressive and sexually inappropriate behavior, and who were diagnosed with varying degrees of mental retardation. The mostly large, male psych techs who were obviously well seasoned and hardened to all types of antisocial and bizarre behavior, initially participated with attitudes of cynical humor and pessimism that Miguel would ever make it in the community. Miguel had unpredictable episodes of bolting out of his work area, getting into fights with other residents, making offensive sexual comments and gestures toward women, and talking in a number of different voices while demonstrating different body postures and facial expressions. He had a substantiated history of severe childhood physical and sexual abuse. He was being treated with antipsychotic medication, loud verbal orders to stop that, and lots of laughter and teasing from staff and professionals when he would act strangely. The visiting team leaders spent time alone with Miguel to reassure him and build rapport. After initially trying to get rid of the nosey interlopers, Miguel voluntarily began to participate in a considerably intimate and honest verbal exchange which he continued as the larger group was rejoined. During the team evaluation, it became progressively more clear to all in the room (approximately 25 people, mostly psychiatric technicians and facility professional staff) that Miguel was expressing several distinct alter personalities, each with a different name, all of whom served specific functions. He clearly expressed fear, pain, memories of his past and asked for reassurance. The energy and courage it took for Miguel to provide this information about himself was palpable and extremely impressive to all in the room. He eventually put his head down on the table and went to sleep, with a team member gently rubbing his back. His staff were absolutely quiet as they pondered what really listening to Miguel in a respectful manner had revealed. The visiting team leader asked how Miguel had come to have old and new bruises covering both arms. The staff had not noticed. As everybody then began to talk, the energy built in the room as the old timers expressed astonishment and then almost wild enthusiasm at the realization that Miguel was a vital, emotional human being, a victim of horrible abuse, and a man with a rare psychiatric disorder, Dissociative Identity Disorder, which is treatable. As a group, Miguels old and new support staffs and case manager decided then and there that they would do whatever it took, together, to move him out of the institution to a safer home with resources to facilitate his healing within two weeks. As we left, one rugged tech said, You know, Ive been here for 25 years and Ive had every kind of training there is, but this really taught me something. Thank you.
Utilization review-type outcome analysis is also important, since funding sources understand and expect these types of measures. Analysis should consist of clearly defined, quantifiable and behaviorally observable criteria and data which are collected before and after team interventions. Examples might include the number of annual trips to the emergency room, frequency of assaults causing injury upon others, number of changes in residence or jobs, number of self-inflicted injuries requiring medical care, and support staff turnover rates. Data-based outcome analysis examples might also include the percentage of clients who had no primary care doctor or no psychiatrist prior to team intervention, percentage of clients receiving new diagnoses at time of evaluation to inform new treatment approaches, percentages of people identified as having inadequate system linkages and percentages of people receiving polypharmaceutical treatment with no documented diagnostic rationale.
After four years of program implementation, the large, hard copy client database is currently being entered into software systems which will have the capacity for the investigators to create and analyze a variety of clinical, epidemiological and demographic reports culled from the multivariate information. Over the past two years, initial informal review of a sample of approximately 150 client records have revealed significant changes in the number and quality of medical and psychiatric diagnoses and treatments provided for individuals who presented with baffling and untreated medical and behavioral symptomatology. Recommendations typically addressed areas of concern which, if corrected, were likely to improve the individuals overall quality of life while reducing health and habilitative expenditures in such areas as medical and behavioral crisis care and inappropriate residential, work or day habilitation services (seen as causing more problems than pleasure and assistance).
Follow-up is the least well funded component of the New Mexico project, and has been identified as requiring further development because it is believed to be vital to assure positive outcomes. The project will contract with or hire a community implementor who will be responsible for traveling to and maintaining ongoing communication and needs assessment with those providers/family members responsible for implementing the recommendations offered by the TEASC team, and who will strengthen the bridge between university and community.
Caveats For Future Directions
The roles of specialized, non-profit community health programs which serve medicaid-insured populations is changing in the face of managed care. Large health maintenance and behavioral health maintenance organizations have the opportunity to realize profits in the provision of medicaid reimburseable services to people with developmental disabilities and mental illness. While managed care organizations often bring increased organizational and information management capabilities to a community, the array and quality of specialized, comprehensive and flexible approaches to serving people with complex needs is likely to be sacrificed (Birenbaum, 1995). It is extremely rare to find plans wherein team evaluations and consultations are billable units of service, or are addressed within capitated or aggregate-average based service delivery models. While such approaches often claim to embrace a team model of service delivery, concerns have surfaced that the composition of a team decreases the involvement of the more expensive professionals such as psychiatrists, and maximizes the involvement of professionals and paraprofessionals who cost less to hire. While, under managed care, primary care physician functions are expanded to include many more global health care assessment, service coordination and gatekeeper activities, few supportive resources and organizational strategies have been provided which could facilitate the effective and efficient functioning of the primary care physician in those capacities.
The whole person, transdisciplinary team evaluation and consultation model assumes responsibility for building solid and functional futures, both for the individuals being served and for the team members who learn to expand narrow professional vision and develop interdependence within a wide spectrum of professional and lay perspectives. In light of the ongoing commitment on the part of the State of New Mexico Department of Health to continue to provide quality specialized services, the University of New Mexico teams are currently discussing whether to expand the provision of specialized, direct continuity services, particularly in psychiatry, in order to respond to unmet needs, or to retain strictly consultative functions, with expanded follow-up contacts.
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At the time this paper was written, the authors formed the core faculty of the Developmental Disabilities Division of the Department of Family and Community Medicine at the University of New Mexico Health Sciences Center.
For further information contact:
Barbara L. Ludwig, L.P.C.
The Community Circle
P.O. Box 460651, Glendale, CO 80246