NADD U.S. Policy Update (from the NADD Bulletin Volume X Number 5)

Complete listing

After 30 years of deinstitutionalization, how are we really doing on behalf of individuals with co-occurring disorders?

Terrence McNelis, Co-Chair, US Public Policy Committee

Since 1977 there has been a movement toward dramatic reductions in the use of large congregate settings for individuals with intellectual disabilities, and to foster integration into ordinary community setting whenever possible.  Although there is great variability between the states in the U.S in the way they implemented plans for community based services, there was a consistent movement toward less reliance on institutional settings and increased provision of community based services with a significant decline in resources allocated to institutional settings across the board between 1977 and 1990.  In fact, 1989 marked the first time that spending in the Community eclipsed the Institutional level. In 2004, twenty one percent of the out of home placements were in Institutions (102, 692), with 77% of the placements in the community (389,693) (Braddock D. et al., 2005).

 

Unfortunately, the move toward community life has been somewhat compromised for those with co-occurring disorders; individuals with mental health issues and intellectual disabilities and those who are medically fragile. For those individuals, the path toward community placement was a rougher one. In the case of medical fragility the focus has been primarily on the identification of sophisticated community medical supports as well as the cost of provision of medical services in small settings. Deinstitutionalization for those with intellectual disability and mental illness has been an even more challenging task. It has required community service systems to gain capacity to support individuals most mental health providers did not have the capacity to serve with ever dwindling resources. Individuals with co-occurring disorders are provided services in multiple service contexts, requiring time, expertise and a service structure that allows for collaboration and cooperation across systems of care.

 

There has been a better understanding of the treatment needs of these individuals over time. Development has concentrated in the areas of medical services, positive approach concepts, person centered planning, community treatment models, and behavior management capacity, psychiatric services, and ways to train direct support professionals. However, in many states there continues to be a lack of access to appropriate services, and little accountability of a system that in some cases remains quite fragmented.    

 

Since there have been attempts to move individuals with ID/MI out of the institutions since the late 1970’s, there are other lessons that have been learned.  The problems just described contribute the finding that persons with ID/MI are the most difficult to move out of institutions, and they are also the most likely to be re-institutionalized.  Individual states have attempted various methods to prevent re-institutionalization. The efforts range from closing state institutions to prevent re-entry, closing admissions to state institutions, and passing on the cost of institutionalization to local entities. In addition to the passive methods mentioned above, some states have developed active diversion strategies to prevent the re-institutional placements of individuals.

 

 

The Home and Community Based Services Waiver (HCBS) is now the principal Medicaid program supporting individuals in residential settings. HCBS, created in 1981, are federal matching dollars for a wide variety of community services and supports (Braddock D. et al., 2005). As an alternative to ICF/MR funding, the “Waiver” provided more latitude on state initiatives to support individuals with intellectual disabilities. The Centers for Medicaid and Medicare Services permit individual states to submit Medicaid Waiver applications on a state by state basis. Therefore each state has developed relatively unique methods of supporting individuals with ID/MI.  Additionally states may no longer fund a program that was once in vogue in the mid 1990’s if it is no longer seen as viable.

 

Although some states have met their goals through the use of the HCBS and other innovative methods of service development and provision, many have found themselves in a placement quandary when they lack adequate community capacity to support an individual with ID/MI and they have closed the state center institution and depopulated private Intermediate Care Facilities (ICFs/MR). In these situations there is evidence to suggest that individuals are being placed in state mental health facilities, not as the treatment of choice but rather as the resource of last resort.  There is no other place to put them, so they are being housed in state mental health facilities.

 

The anecdotal evidence suggests that there has been an erosion of the ability to support individuals with ID/MI in the community.  Although there have been numerous success stories, more and more states are finding themselves in the placement quandary. Cuts in mental health services and related supports have decreased the community capacity to serve individuals with a co-occurring intellectual disability and mental illness, few states have community based diversion services, and the state developmental centers are no longer available. The option selected may be a state operated psychiatric facility (hospital) or placement in another facility out of state.

 

The NADD US Policy Committee would like input from our readership in hopes to learn more about experiences around the country with regard to these issues. We are interested in learning about three factors:

1. How does your state support individuals with co-occurring disorders with acute needs or who are in crisis?

2. To what extent are state mental health hospitals used for individuals with intellectual disabilities for long term care in your state? 

3. Do you provide services through the Home and Community based Medicaid waiver to help keep people out of institutions or long term hospitalizations? Please describe

 

At the Annual Conference in Atlanta this October, the US Public policy Committee will provide a forum to share information about this very important issue. We have invited speakers who will help to define the problem, prevent solutions and discuss how your state can consider providing more effective services through their HCBS waiver.

 

Please send your comments and information to: Joan B. Beasley, Ph.D. Chair US 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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