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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 1970s, 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 1990s 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
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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:
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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
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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
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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
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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
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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
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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
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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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