NADD U.S. Policy Update (from the NADD Bulletin Volume X1 Number 3) Complete listing Preventable and treatable medical comorbidities and adverse drug events in people with ID/MH Laurie Charlot, PhD   Few studies report the prevalence or nature of medical problems experienced by persons with intellectual disabilities (ID) treated for psychiatric illness. Despite this, for people with ID, physical distress is often associated with changes in mood, mental status and behavior, acting as a significant “setting event” (Carr & Owen-Deschryver, 2007).  Medical causes for agitated behavior are frequently missed because people with ID are poor reporters of their own health problems.  Also, individuals with limited expressive language often show the same externalizing behaviors at different times, for different reasons. These behaviors act as a “final common pathway” for distress.    The potential cost for poor outcomes related to underestimating the impact of medical problems on behavior, both in suffering and in health care dollars, is likely quite high.  People with ID are known to have high rates of medical problems when compared to people without disabilities. Having a mental health disorder may elevate risk for other health problems in persons with ID (Kwok & Cheung, 2007).  Recent reports suggest from 30 - 40% of people with ID have a psychiatric disorder, and as many as 60% are treated with psychoactive medications. It is important to know if some of these individuals have treatable or preventable health problems or adverse drug events (ADEs). Recent investigations have emerged highlighting the enormous impact of health problems suffered by persons with serious mental illness, often associated with morbidity and mortality rates many times greater than those reported for people without psychiatric disorder (Connolly & Kelly, 2005).    In addition to many lifestyle factors associated with chronic mental illness that appear to adversely affect health outcomes, recent research points to risk for specific medical problems related to psychopharmacologic treatment including obesity, hypertension and diabetes.  Among the elderly, treatment with antipsychotic medications to “reduce agitation” has been linked to increased risk of death. It is unclear to what extent these same problems or different ones affect people with ID/MH (Mackin, Bishop, Watkinson, Gallagher & Ferrier, 2007).  At least some differences in health related morbidity are likely to be identified related to associations between ID and an array of genetically determined risk factors.  In light of recent findings from the Tyrer et al. (2008) study, it seems timely to learn more about side effects, as well as health issues we may routinely miss in our patients with ID/MH.    We recently conducted a retrospective review of 198 consecutive admissions to an inpatient psychiatric service for people with ID and found high rates of medical comorbidity (Charlot, Abend, Ravin, Mastis, Hunt & Deustch, manuscript in preparation). In many cases, inpatients with ID were agitated or experienced significant mental status changes that were primarily a product of a non-psychiatric medical problem.  A variety of health problems were seen to provoke changes in behavior and mood, including constipation, GERD, UTIs, ear infections, dental pain, skin infections, neuroleptic induced movement problems such as akathsia and dsytonias, excessive sedation, delirium, sleep apnea, hypothyroidism and diabetes.  For many individuals, improvement in medical problems was a critical component of subsequent behavioral improvements.  Though the inpatients had low rates of psychosis, 73% received treatment with at least one antipsychotic drug.  Many were on multi-drug regimens and had recently experienced multiple drug changes.   More systematic research is needed to examine types and rates of preventable and treatable medical problems and ADEs in people with ID/MH.  Such problems could be reduced by: Increased government support for research exploring the relationship between health and mental health in people with ID Development of screening tools and assessment guidelines to increase early detection Initiatives addressing the prevention of common medical problems and ADEs, i.e. educational programs aimed at caregivers, case managers/clinicians, inpatient programs, ERs, and especially MDs to highlight unique issues affecting people with ID/MH Collaborations with payors and governmental agencies to explore the need for individuals with MH/ID with severe difficulties (i.e. multiple psychoactive drugs, frequent hospitalizations) to have access to multidisciplinary medical care, longer medical appointments and clinician reimbursement for additional work required to provide adequate care to people with highly complex needs. Initiatives aimed at promoting wellness, addressing the unique needs of people with ID/MH including programs promoting use of art, music, sports, exercise, and healthy diets and to promote recognition of the key role of meaningful engagement in wellness.   Carr E.G., Owen-Deschryver, J.S. (2007). Physical illness, pain, and problem behavior in minimally verbal people with developmental disabilities. Journal of Autism & Developmental Disorders. 37(3):413-24.   Charlot, L.R., Abend, S.A., Ravin, P., Mastis, K., Hunt, A. & Deutsch, C. Medical problems of psychiatric inpatients with Intellectual Disabilities. (Manuscript in preparation).   Connonly and Kelley 2005    Kwok H. & Cheung PW. (2007).Co-morbidity of psychiatric disorder and medical illness in people with intellectual disabilities. Current Opinion in Psychiatry. 20(5):443-9, 2007 Sep.   Mackin P., Bishop D., Watkinson H., Gallagher P. & Ferrier IN. (2007). Metabolic disease and cardiovascular risk in people treated with antipsychotics in the community. British Journal of Psychiatry. 191:23-9.   Tyrer P., Oliver-Africano PC., Ahmed Z., Bouras N., Cooray S., Deb S., Murphy D., Hare M., Meade M., Reece B., Kramo K., Bhaumik S., Harley D., Regan A., Thomas D., Rao B., North B., Eliahoo J., Karatela S., Soni A. & Crawford M. (2008). Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: a randomised controlled trial. Lancet. 371:57-63.         For further information please contact Lauren Charlot, Ph.D. charlotl@ummhc.org   The “US Public Policy Update” is an ongoing column in the NADD bulletin.  We welcome your comments and submissions for this column.  To learn more or to contribute to this column you may contact Joan Beasley, Editor of the U.S. Public Policy Update and Chairperson of the U.S. Public Policy Committee at jbbeasley@rcn.com.

Upcoming Conferences: September Ohio State 10th Annual MI/DD Conference ,  Mental Health Aspects –Treatment & Support (September 18 & September 19, 2012) Columbus, Ohio October NADD 29th Conference & Exhibit Show, (October 17 - 19, 2012)  Denver, Colorado October 2013 NADD 30th Conference & Exhibit Show, Baltimore MD (October 23 - October 25, 2013)  Complete Calendar New Educational Products: Intellectual Disability and Mental Health: A Training Manual in Dual Diagnosis Sharon McGilvery, Ph.D. and Darlene Sweetland, Ph.D. With the release of this book, Drs. McGilvery and Sweetland share decades of experience working with individuals diagnosed with an intellectual disability and co-occurring psychiatric disorders. Their well-practiced approach takes into account the extremely complex nature of working with dual-diagnosis.  The authors provide in-depth information about the diagnostic process, hands-on treatment considerations, and their experience training thousands of people to work passionately with these individuals.  An important contribution is their approach to addressing complicating factors in identifying appropriate psychiatric diagnoses, as well as the problem of the underreporting of psychiatric symptoms and disorders. Finally, those working in a variety of contexts with these individuals will benefit from the innovative approaches of looking at treatment and intervention strategies that can be immediately implemented. 264 pages       Details: ST11-053B   A PRACTICAL GUIDE to Assessing Medical Issues Associated with Behavior/ Psychiatric Problems in Persons with Intellectual Disability – Revised in 2011 Ann R. Poindexter, M.D. This book discusses medical/medication issues which may present as behavioral/ psychiatric problems in individuals with intellectual disability.  Three self-directed instructional courses and several illustrative case histories are included.  110 pages\ Details: DA05-021BR   Psychotherapy for Individuals with Intellectual Disability Edited by:  Robert J. Fletcher, DSW, ACSW This book provides the reader with insightful and useful ways to provide psychotherapy treatment for individuals who have intellectual disability (ID).  It brings together all three modalities (individual, couple, and group), and a variety of theoretical models and techniques are discussed.  The first section, Individual Therapy, offers a variety of approaches and techniques including dialectical behavioral therapy, positive psychology, mindfulness-based practice, and relaxation training. Also included in this section are chapters on specialty populations including victims of abuse, people who have Autism Spectrum Disorder, and people in mourning. The second section is a chapter on group therapy addressing trauma issues. The third section is on family and couple therapy. The fourth section covers chapters on research, ethics, and training.  The individual authors are respected authorities in the field of providing psychotherapy treatment for persons with ID and all have contributed to the professional literature.  This book is a major contribution to the effort to make psychotherapy available to individuals who have ID and should serve to further stimulate interest in the provision of psychotherapy treatment for individuals who have ID co-occurring with significant mental health problems. NADD # CT11-051B Details     Comprehensive Competence-Based Parenting Assessment for Parents with Learning Dificulties and Their Children Maurice Feldman, PhD, Marjorie Aunos, PhD This book presents an innovative, empirically-supported approach to assessing parenting capacity of parents with learning difficulties that can lead to more humane, fair and accurate child custody decisions.  The authors are leading researchers and practitioners in this field haing worked with hundred of these families.  Many professionals working with these families recognize that the current parenting capacity assessment approaches are based on outdatd and invalid assumptions and methods.  This book addresses the unique assessment needs of these families and includes detailed background information, rationales and methods. NADD # DA10-050B Details     Working with People with Challeging Behaviors: A Guide for Maintaining Positive Relation Nathan Ory The material in this book introduces general practices and specific solutions to behavior problems that will work with people who display difficult and challenging behaviors regardless of who they are.  It is especially suitable for working with individuals who have developmental or intellectual disabilities coupled with a behavior disorder.  The methods also apply to the person with emotional or psychiatric disturbances, or another serious mental health problem.  Finally, they are helpful in providing support to elderly individuals who display challenging behavior. NADD # ST10-049B Details     Human Needs and Intellectual Disabilities: Applications for Person Centered Planning, Dual Diagnosis, and Crisis Intervention Steven Reiss, Ph.D. Human Needs and Intellectual Disabilities identifies the 12 human needs most relevant to the lives of people with intellectual disabilities, autism and related developmental disabilities.  It includes detailed, practical suggestions for caregivers or parents interested in the happiness, quality of life, and self-determintion of their loved ones or consumers.  The book includes detailed, practical suggestions for reducing episodes of challenging behavior and psychiatric symptoms in people with a dual diagnosis (intellectual disabilities and mental illness).  It shows how to substitute the language of individuality (e.g., "friendly person") for the language of disability (e.g., "person with disability").  It also reduces the tendency of planners to confuse their own value system for that of the consumer.  The book includes scholarly reviews of dual diagnosis literature on mental illness, prevalence, and assessment. NADD # DA10-048B Details   Positive Identity Development Author: Karyn Harvey, PhD Positive Identity Development is an exciting new approach to treatment for individuals with intellectual disabilities.  This book provides a new theoretical perspective on treatment along with a variety of innovative tools.  It rejects reducing adults with intellectual disabilities to a mere compilation of their behaviors and promotes the use of a positive, therapeutic approach to each unique individual. Psychologists, social workers and therapists should be able to use the tools presented in this book to directly enhance the effectiveness of the treatment they provide to adults with intellectual disabilities. This book promotes well-being on every level and explores a broad range of issues relevant to the life and mental health of adults with intellectual disabilities Mbr Price: $34.95 Non-Mbr:  $39.95 NADD #CT09-047B Details Down Syndrome: When to Worry about Mental Health and What to Do About It Robin Friedlander, M.D. & Peter Johnson, Ph.D. NADD # FI09-044B Details Working with People who have Intellectual Disability and Behavioral Problems: A Self-Study Guide for Interdisciplinary Team Members Ann R. Poindexter, M.D. & Paul D. Kolstoe, Ph.D. NADD # ST09-045B Details Multi-Media CDs of NADD 25th Annual Conference Presentations Presentations recorded at NADD 25th Annual Conference are available as multi-media CDs.  These CDs contain the video and Power Point from conference presentations and are a great tool for training yourself and your staff.  To order, or for additional information, click here. Community Networks of Specialized Care:  Building Community Capacity through Training and Education Lisa Holmes, Liz Froese, MSW, Rosanne Stein, LLB, BSc, Sandi Bricker NADD Competency-Based Dual Diagnosis Certification Program Robert Fletcher, DSW, ACSW, FAAIDD; Donna McNelis, PhD; John McGonigle, PhD; Kathleen Olson, PhD; Jarrett Barnhill, MD Autism Spectrum Disorders:  Separating the Data from the Myths Ann R. Poindexter, MD Diagnostic Systems for Use with People with ID Luis Salvador-Carulla, MD, PhD, Robert J. Fletcher, DSW, ACSW, FAAIDD, Sally-Ann Cooper, MD The price for the above multimedia is:  Member:  $49.95       Non-member:  $59.95 To order, or for additional information, click here.

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