NADD U.S. Policy Update (from the NADD Bulletin Volume XIII Number 1) Complete listing Do We Need To Revisit Our Concepts Of Community Supports? Terrence McNelis, MPA, Chair, NADD US Policy Committee The prevalence of mental illness for persons with cognitive impairment has been well studied over the past 30 years.  Although the figures vary it is generally accepted that the incidence of mental illness in persons with an intellectual disability is 3 to 5 times greater than the nondisabled population (American Psychological Association, 2000). Attempts to quantify the percentage of persons with intellectual disability and mental illness have ranged from 20% to 71% (Borthwick-Duffy, 1994; Moss, 2000).  There have been disagreements over diagnostic validity, diagnostic overshadowing as well as significant variance in settings.  For the purposes of this discussion we will use the most conservative estimate.  In July of 2008, the population of the United States was a little over 302 million. Using the above figures that would suggest there are 966,000 people with intellectual disabilities who also show signs and symptoms of a mental health disorder.   For over 20 years state developmental centers have shown dramatic reductions in their census with the movement of individuals into the community settings. By 2007, the average daily census in large state settings had reduced from over 150,000 in 1977 to 37,172 (Prouty, Alba, & Lakin, 2008).  However the year 2007 also showed a significant slowing of the trend of movement of people out of state facilities. During the year, the census was reduced by 3,458 individuals. This number is comprised of 2,637 individuals who were actually discharged and 821 others who had passed away. However, 2,128 additional people were admitted into large state facilities. This reveals that the real net reduction was 509 people or a little over 1% reduction (Prouty, et al., 2008).   As stated in the introductory paragraph, it is a conservative estimate that the percentage of people with intellectual disability and a co-morbid mental health disorder could be around 20%. Therefore it is safe to assume that there are at least 7,500 individuals with a dual diagnosis, who continue to reside in state centers.  Most researchers agree that the number of individuals with ID/MH most likely is much higher than the 20% estimate given. It is well know that as congregate settings decrease in size it is often the person with the more challenging issues who is left behind.  As large state facilities decrease in census the ratio of people with ID/MH increases. Additionally, the community service capacity has decreased over the same period of time. There has been a slow erosion of the funding for these programs over the past few years, and it has accelerated dramatically since the onset of the recession.  As states have struggled with budgetary issues, there has been an inability for rate increases to keep up with the ever increasing cost of services.  These increases have mainly been in the non-negotiable cost arena of health insurance, heating, utilities, and gasoline. In the absence of cost-of-living adjustments, community service providers have found it difficult or impossible to increase the wages of direct support professionals and clinicians as well as administrators. Vacancy rates have risen and turnover has continued at an unacceptable rate. These weaknesses in the community services puts individuals at risk when there is a consideration of moving that individual home.   While all of the above issues are brewing, the national waiting list for intellectual disability services has ballooned to 224,147 individuals requesting Medicaid, Health and Community Based Services (HCBS) during the same 2007 period.  Of those on the waiting list, 88,349 are requesting residential services.  To meet this need, the HCBS budget would have to be increased by 46% (Prouty, et al., 2008) during a fiscal era where funds are scarce or nonexistent.    Clearly we are at a crossroads in our concepts of how we deliver community services going into the next decade.  At the 2009 NADD Annual Conference in New Orleans, Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disability Services (NASDDDS), eloquently stated the need for a paradigm shift in our concept of community services.  Ms. Thaler spoke to the need to support individuals and their families in their natural homes and in alternatives to group homes in the community.  She suggested movement in the existing services by offering individuals alternative less restrictive settings to community group homes and supporting families more aggressively to keep their family member home.  Additionally this author would suggest a renewal of our initiative to move people out of state developmental centers. Not only is it ethically important to have people live in the least restrictive setting, it is also an economic engine to aid the system. In 2007, the average cost to support an individual in a large state facility was $176,000/yr. (Braddock, Hemp, & Rizzolo, 2008). The financial argument against moving people out of the state centers has not been the cost of community services but rather has always centered on the transition cost created by the downsizing of the institutions while at the same time ramping up community services. However, it has become clear that the dollars that are in the large state facilities are also the revenue that could strengthen the community system and allow movement of people back home.  It is imperative that states create ways of moving people and the required dollars from large state facilities into well designed and fully funded supports in the community. This would allow new service initiatives to be more responsive to the waiting list rather than a competitor for scarce resources.   References American Psychiatric Association (2000) Diagnostic and Statistical Manual of Mental Disorders, (4th ed., text revision). Washington, DC: Author.. Borthwick-Duffy,S.A .( 1994). Epidemiology and prevalence of psychopathology in people with mental retardation. Journal of Consulting and Clinical Psychology, 62(1), 17-27. Braddock,D.,Hemp,R, & Rizzolo,M.  (2008). State of the states in developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities.  Moss, S. (2000). Psychiatric symptoms in adults with learning disability and challenging behavior. British Journal of Psychiatry, .177, 452-456. Prouty, R.W., Alba, K., & Lakin, C.K. (2008). Residential services for persons with developmental disabilities: Status and trends through 2007, Research and Training Center on Community Living. Univ of Minnesota, Aug.     For further information, contact Terrence McNelis, MPA, Chair, NADD US Policy Committee at tmcnelis@nhsonline.org.  The "U.S. 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 at joan.beasley@unh.edu.

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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