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NADD U.S. Policy Update (from the NADD Bulletin Volume IX Number 5)Complete listing
The need for a clear understanding of an individual's right to sexual expression
Paul A. H. Partridge, Ph.D. and William R. Bonsal, LCSW-R
US Public Policy Update
A challenging area for service providers is how to respond to issues
of sexual expression among individuals with intellectual
disabilities. While much has been written on this topic, there is
often disagreement and legitimate concern about the extent to which
an individual's sexual expression should or could be supported given
that their disability may affect their ability to consent to sexual activity.
Agency policies to address the issue of sexuality and sexual
expression are needed and help to avoid two potential areas in which
an individual's rights may be violated. First there needs to be
sensitivity to the rights of the individual to engage in consensual
sexual expression and choice. The second potential rights issue
involves the necessity to minimize the risk of harm or exploitation,
particularly among individuals who are not capable of consenting.
From an administrative standpoint, the presence of a clear and
concise policy helps to set the tone, expectations, and agency
philosophy regarding relationships, intimacy, and sexual behavior.
When challenging or delicate situations occur regarding sexuality, if
the agency has articulated fundamental concepts and direction in a
sexuality policy, it serves as a convenient and consistent starting
place to address issues. It also provides education and guidance to
staff regarding individuals' sexual rights, responsibilities, and any
limitations on sexual expression as defined by law, the person's
ability to consent, or agency policy. The simple presence of a
sexuality policy itself is likely to convey that this issue is one
the agency will handle responsibly.
From an employee standpoint, the presence of a sexuality policy may
provide a philosophical foundation and guidance with regard to a
topic that the employee may have little information about or,
alternatively, preconceived attitudes that may or may not be
consistent with the agency philosophy. The policy may also serve to
raise awareness among the staff of the significant vulnerability of
the ID population for sexual abuse and the need to protect
individuals from harm. In addition, the presence of a policy may
provide protection for an individual employee if their response to a
specific situation is consistent with that policy.
From the perspective of the individual with disabilities, the
presence of a sexuality policy may help to ensure that individual
rights are not arbitrarily denied. It also serves to inform the
individual (and their families) of how the agency addresses issues
related to sexuality. Depending on the individual, this may be an
important factor in determining whether they choose to seek services
through that agency.
A sexuality policy must necessarily straddle the fence between being
overly vague and instituting sexuality "policing" of
individual's intimate behaviors. Providing some measure of balance is
the key issue here. This includes balancing the needs of the
individual and the larger system, balancing the rights of the
individual and the wishes of their family/caregivers, and balancing
the risks of sexual activity and the responsibility of the agency to
try to protect the individual from harm. When developing or revising
a policy, balance may be best achieved by ensuring that diverse
opinions and perspectives are sought. It is especially important to
try to include individuals with Intellectual Disabilities and family
members in this process.
In developing a policy, it may be helpful to define sexuality and
sexual expression and to recognize that overt sexual expression may
or may not be part of an individual's relationships with others. If
there are some guiding principles the agency wishes to follow, these
should be stated as clearly as possible. Affirming basic rights helps
to avoid a punitive or judgmental tone to the policy. Then referring
to any relevant state regulations, laws, guidelines, or
recommendations would give the policy a footing from which to develop.
Specifically, the policy may want to touch on a number of different
areas. These could include (but are not limited to) issues of
privacy, consent, education, and protection from abuse or exploitation.
The issue of privacy of individuals can be a difficult issue to
negotiate in institutional and community settings, but is one that is
critically important to address in order to protect the rights of the
individual and to help avoid inappropriate public conduct. Too often
a private-behavior-in-public problem can be traced back to a lack of
any truly private space in the individual's life.
With regard to consent, the policy may address how the ability to
consent to sexual activity will be determined and the circumstances
under which that would occur. Will an individual clinician make this
determination, will the person's "team" make this decision,
will a committee review each case, or will there be a combination of these?
If a determination is made that a consumer may benefit from sexuality
education (or if the individual desires it), how will this be
provided? Availability of sexuality education tailored to the needs
of individuals with ID may be difficult to find. Some possibilities
include investing in an educator, training staff to provide sexuality
education, or relying on community resources, if available.
Facing the topic of sexuality and persons with intellectual
disabilities can be a serious challenge. There are a number of
potential barriers and often a lack of consensus among staff,
administrators, individuals, and their families. While maximizing
independence is a stated goal for many agencies and programs, it is
in the area of sexuality that this philosophy may be most tested. A
descriptive and inclusive sexuality policy that is congruous with the
agency's vision is the place to begin to meet the challenge of how to
provide both responsible and respectful support to individuals with
regard to their right to sexual expression.
Paul Partridge, Ph.D., is a Principal Psychologist with the Capital
District DDSO in Schenectady, NY. His e-mail is pahpartridge@nycap.rr.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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