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NADD U.S. Policy Update (from the NADD Bulletin Volume VII Number 5)Complete listing
Aging and Alzheimer's Disease among Persons with Developmental Disabilities
Philip McCallion, Ph.D., Director
Increases in life expectancy expose a growing number of persons with
developmental disabilities to age related diseases such as
Alzheimer's Disease (AD). For many this becomes at least a secondary
and for some, over time, a more significant disabling condition.
There is some argument about whether the risk for AD for most persons
with developmental disabilities is greater or the same as the general
population, but there is increasing recognition that persons with
Down Syndrome are at greater risk for occurrence, and on-set on
average is at younger ages. Regardless, as the population of persons
with developmental disabilities redistributes into older ages,
providers are increasingly challenged to realign services to address
this reality. There are reports that some providers are supporting
aging in place, but also of pressures to develop specialized AD units
and to transfer to more restrictive settings (Janicki, McCallion &
Dalton, 2002). The concern is that such movements of consumers often
reflects a reactive rather than a proactive approach to AD care
concerns. The challenge is to plan for growth in this concern and to
realign services accordingly.
Alzheimer's disease challenges both the programming philosophies
prevalent in developmental disabilities services and the ways in
which resources have been allotted to support care. Prevalent
programming concepts for persons with developmental disabilities
emphasize being in the community, making one's own decisions,
building a network of relationships, holding a job, and being more
independent this year than last year. However, AD is a progressive
disease that will mean over time declines not accruals in skills,
increased needs for supervision and growing co-morbid health
concerns. This means that increasingly over time in homes where
individuals were largely independent in self care, they will need
increasing assistance, persons who negotiated stairs in two story
homes will need ground floor bedrooms and fully accessible bathrooms,
and where persons went to a job or program every day they may
increasingly have health concerns that cause them to stay home, they
may no longer be able to hold a job and when they do go to an
habilitative program they will need different activities than those
usually provided. Homes that look like any other home in the
community may not easily meet increased accessibility needs, staffing
patterns that assume everyone leaves during the day may no longer be
sufficient and day programs who sent home when people were
"ill" may not be equipped to support growing infirmity and
in the later stages of dementia, for some persons, increased incontinence.
Already there are reports that care in these circumstances is both
physically and emotionally draining for many staff (McCallion,
McCarron, & Force, 2004; McCarron, Gill, McCallion & Begley,
in press) and that some agencies because of staffing and resource
concerns are referring people with developmental disabilities and AD
to more restrictive settings (Janicki et al., 2002). The care needs
clearly have implications for level and type of staffing and for
staff training, programming approaches in both residential and day
program settings, and the continued appropriateness of some physical
settings. Different approaches are needed if critical issues for
these persons are to be addressed and community life is to be
maintained. Those critical issues have been identified as strategies
to promote (1) Absence of pain, (2) Maintenance of health, (3)
Psychosocial well-being, (4) Skills maintenance with support when one
declines, (5) Absence of and supportive responses to problem
behaviors, (6) Continued leisure and community participation, (7)
Enjoyment of family and friends, (8) Dementia -focused programming,
(9) Supportive living spaces, and (10) Alleviation of caregiver
burden (McCallion & McCarron, in press).
As the service system grapples with this new reality, services will
be needed that address (1) diagnosis and assessment, (2)
multi-disciplinary assessment and clinical support, (3) comprehensive
person centered services, (4) advice on environmental modification
and (5) staff and family education and training. These are familiar
service titles but the services themselves will change radically.
Clinics, day programs and residential providers must decide where
they fit in this redevelopment. New approaches to staffing, and
different types of staff will also be needed. This has educational,
regulatory and funding components to be addressed. A further
difficult and potentially costly issue will be to examine the
appropriateness of the existing out of home housing stock and making
critical decisions in this arena for the future of community care.
Janicki, M.P. , McCallion, P., & Dalton, A.J.(2002).
Dementia-Related Care Decision-Making in Group Homes for Persons with
Intellectual Disabilities. Journal of Gerontological Social Work,
38(1/2), 179-196.
McCallion, P., & McCarron, M. (in press). A perspective on
quality of life in dementia care. Mental Retardation.
McCallion, P., McCarron, M., & Force, L.T. (2004) A Measure of
Subjective Burden for Dementia Care: The Caregiving Difficulty
Scale-Intellectual Disability. Journal of Intellectual Disability
Research. 48(6).
McCarron, M., Gill, M., McCallion, P., & Begley, C. (in press).
Alzheimer's Dementia in Persons with Down syndrome: Predicting Time
Spent on Day-to-Day Caregiving. Dementia.
Support for his work with persons with developmental disabilities and
AD providers by an Alzheimer's Demonstration Project funded by the
Administration on Aging is acknowledged by the author However the
opinions expressed here are those of the author.
Philip McCallion, Ph.D., Director
Center for Excellence in Aging Services
University at Albany
mcclion@albany.edu
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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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