NADD U.S. Policy Update (from the NADD Bulletin Volume X1 Number 4)

Complete listing

Reassessing Psychoactive Medication Use for Challenging Behaviors:  When is it an Antidote, and When is it the Problem?

Susan L Abend, MD, FACP, Executive Director, Healthcare Quality Management Group, Framingham, MA

For those of us who take care of people with intellectual disabilities, it’s clear that advances in psychopharmacology have helped tremendously over the past twenty years.  Advocates have helped us recognize that challenging behaviors may well be evidence of a treatable thought or mood disorder, and this recognition has freed many of our patients from disorganized thought, compulsions, and psychic pain.  No longer do caregivers dismiss those with distressing behaviors as having a hopeless consequence of their disability.  Indeed, current estimates indicate that approximately 40% of the ID population is diagnosed with a treatable mental illness.

How, then, do we take care of those who exhibit challenging behavior, yet who don’t meet criteria for an easily-treatable mental illness?  The evidence is overwhelming that these people, too, are given drugs, and lots of them.  Estimates indicate that 60% of the ID population is on psychoactive medications, with the majority receiving two or more daily.  We are bombarded with recommendations from experts and advertisements for using Drug X  to “target” Specific Behavior Y.  Only by reading fine print or searching the literature does a doctor find out that there is considerable question that using psychoactive medications as a first line approach is truly safe and effective.  The observation that most people with ID and challenging behavior are given more than one drug, and often more than two, is in itself reasonable evidence that we don’t have simple antidotes to specific challenging behavior.  Sadly, many doctors often take their patients on an expedition for that magic cocktail- the holy grail of medication combinations that will quiet or decrease the frequency of self injury, or aggression, or agitation.

Is it possible that a challenging behavior is something more than just a psychopathology?  Behavior, of course, is a symptom- it is caused by an underlying state or condition; it’s not a lesion in itself.  And it is well documented that in those with ID, challenging behaviors are symptoms of any number of problems, including-but not limited to- treatable psychopathology.  These behaviors are common in patients who have physical discomfort, or who are experiencing psychic pain from any number of social or environmental difficulties.  So it stands to reason that the construct of Drug X to treat Symptom Y is inherently flawed, because we don’t know why Symptom Y is occurring. We’ve trained our staff to identify and quantify the symptom, but we’ve failed to train them to evaluate for evidence of the cause.  Without this information, any treatment, including psychotropics, is nothing but arbitrary.

There is another serious problem which needs to be addressed before we continue to try out the latest “antidote.”  Even when psychotropics are effective for managing easily-diagnosed psychiatric disorders in those with average cognition, it’s clear that they come with a high price: unpleasant and often intolerable neurologic, cardiac, renal and gastrointestinal effects.  For those with ID, the effects are often very severe: medication-induced stiffness and other movement disorders cause pain, risk falls, and can result in painful fractures and permanent spinal deformities. Pneumonias are not uncommon, as patients develop swallowing and esophageal dyscoordination from these medications, and stomach contents burn the esophagus and inflame the lungs. Constipation, one of the most common, although frequently undertreated conditions in ID patients, is worsened by almost all of the psychotropic medications.

For many patients with ID, the only mechanism they have for communicating discomfort or pain from an adverse medication reaction is, of course, by displaying challenging behaviors such as agitation, aggression and self-injury. And in a treatment paradigm that focuses only on the management of challenging behavior, the most likely treatment plan for these patients includes, ironically, more psychotropic medication.

This egregious error-the use of a psychotropic medication to target a symptom caused by a psychotropic medication- occurs all too often.  Sadly, there is rarely a plan for assessment of medication adverse effects or efficacy.  All too often a decrease in the offending behavior, if it occurs at all, is caused by simply rendering the patient too sedated or too stiff to be able to communicate distress.

The challenge for ID advocates in the 21st century is to assure that everyone receives responsible, effective therapy in a safe and accountable environment.  To do this, we must undertake four very important tasks.  First, we must develop best practice guidelines for the evaluation and management of challenging behaviors.  These guidelines should be developed in a multidisciplinary fashion, in an environment free of industry bias and influence, and should include methods for assuring that common causes of challenging behavior are rigorously assessed.  Second, we need to develop proper, usable metrics to indicate if a particular treatment is, in fact effective.  Such a measurement strategy needs to be multidimensional- eg it must include evidence of improved function and quality of life, rather than simply measure the presence or absence of target symptom.  Fourth, we must train our frontline caregivers to appropriately assess and communicate evidence of distress, and help them become vigilant that guidelines are appropriately followed. Finally, we must create mechanisms to formally hold all caregivers-frontline staff as well as prescribers-accountable for performing appropriate processes, and assuring excellent clinical outcomes.

We’ve come a long way in caring for patients who suffer with difficult, often injurious behaviors, and our management repertoire has never been greater.  Most staff, now vigilant for evidence of mental illness, are now ready for the next level of expertise: to become first-line assurance for error-free, responsible, safe medication management.  With clear guidelines and appropriate metrics, we can teach them to assure that no patient experiencing an adverse drug event will ever receive the offending medication as a treatment.

 

Contact:  Susan L Abend, MD, FACP

                Healthcare Quality Management Group

945 Concord Street

Framingham, MA 01701

Phone: 508-620-4535

email: sabend@pol.net

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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