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NADD U.S. Policy Update (from the NADD Bulletin Volume X1 Number 1)
Complete listing
Some families’ perspective on community placement options in Utah
Some families’ perspective on community placement options in Utah
Julia Pearce
The current trend in public policy regarding the closure of state
funded institutions has some groups and individuals calling for the
closure of the Utah State Developmental Center. Those in favor
of closing this facility that serves approximately 230
individuals believe individuals would be better served in more
natural settings in the community, and that savings from the closure
would result in additional funds for more people to be served
in the community overall. Closure advocates also proclaim that needed
supports will be available throughout the state to provide a better
quality of life and ensure an adequate level of safety to all who
access those services. Those who have called for this closure
also believe that all families and self-advocates would prefer to
have this facility closed.
However, there are some families and advocates who do not support the
closing at this time. The state of Utah has maintained and improved
the services at the Developmental Center that provides care for a
population of people that would be would not be effectively served in
a community setting, given the needs of those individuals.
Families who have cared for these individuals in their homes know
that the Developmental Center setting provides consistency, safety,
structure, a sense of community and peers, and a highly professional
level of care, is essential, and does not currently exist in the community.
Many individuals at the Developmental Center, and those who may need
it in the future, are often those with co-occurring intellectual
disabilities and mental illness. Especially if communication is
significantly impaired, it is difficult if not impossible for
families to receive adequate diagnosis, treatment, medication
management and other therapies necessary for the individual and
family to remain stable in the community. The mental health
system in the state is not prepared to treat individuals in the
context of their intellectual disability, and the ID/DD system is
often ill-equipped to support with mental health needs in addition to
their cognitive disability.
The provider system in Utah is not adequately prepared to meet the
current demand for community services. In order to better meet the
needs of those individuals already receiving services through the
home and community based waiver system, significant improvements must occur.
Utah also needs to address those hundreds of individuals on the
waiting list to receive services. In addition, the argument
that closing the Developmental Center would save the state money to
serve more people is false. Individuals who are served at the
Center will need the same level of care regardless of where the
services are provided. Decentralizing services may actually increase
the cost of service delivery.
With little professional and medical support available in the
community, families are left with only one option: to seek a
setting that will provide the most appropriate stable, long-term
professional level of care available for their child to receive the
supports needed to ensure his or her safety and a quality of life
that is sustainable.
While families agree that those who can be supported in their homes
and communities should be, we are uncomfortable with the removal of
the Developmental Center. Any discussion of facility closings must
coincide with evidence that the community system can address all of
the service needs of individuals now benefiting from the facility.
Therefore, the plan to close the facility is premature and
irresponsible. Instead, we call for the following improvements
to the system to alleviate the stress on the infrastructure of our
family and provider system:
Advocates and legislators must recognize the need for additional
funding to provide a greater range of services across the state.
The legislature must approve a higher rate of pay for direct service
workers and those in the human service field to increase the quality
of this vital workforce in this disability arena.
Education must be available to parents, families, and caregivers and
others concerned with the care of those currently served in the
Developmental Center and those who may be thinking of this as an
option in the future regarding service patterns available throughout
the continuum of life. Families should know all the options
that are available and have a voice at all steps of the planning process.
While we respect the rights of all families and individuals to choose
what is best for the well-being and safety of their loved one with a
disability, no choice should be removed from the system, and the
disability advocacy community should focus on evidence based service
development and implementation to ensure that services provided in
any setting are of the highest quality. We ask for support and
respect for the choices of all individuals with disabilities, their
families and caregivers. In the current system of care, the removal
of the Developmental Center in Utah would only worsen an already
deficient system. Utah is simply not ready for this move and as
family members we will advocate for what is best for our loved ones.
Julia Pearce NADD
Family Issues Committee; US Public Policy Committee
runnamokk@hotmail.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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