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NADD U.S. Policy Update (from the NADD Bulletin Volume IX Number 3)Complete listing
Provision and Reimbursement of Health Care for People with
Developmental Disabilities
Leslie Rubin MD
US Public Policy Update
Traditional health care reimbursement is based on the model of
keeping the wheels of industry turning and was designed for generally
fit and healthy workers who for the most part have acute care needs
in order to return to the workforce. While this model is effective
for the population described, it does not work well for people with
chronic conditions especially if there are implications on education,
employment and productivity, such as present for people with
developmental disabilities. Although much advocacy over the decades
has resulted in some improvements in the system, the health care
financial crisis we are facing and the managed care systems we see
today seriously cut into what is needed to provide quality health
care for people with developmental disabilities and contributing to
health care disparities.
The reality of health care needs in society and of its citizens
requires a philosophical approach that has been articulated in the
World Health Organization definition of health which states that
health is not merely freedom from disease, but the promotion of
physical emotional and social well-being. This clearly does not fit
into the existing health care reimbursement model.
Chronic conditions not only affect body systems but influence
life-style and require often dramatic changes in habits and practices
that affect every-day life; a striking example of which can be found
in the diagnosis and management of diabetes. In the acute
presentation of a diabetic crisis, management requires sound medical
knowledge and appropriate interventions including in some situations
the need for intensive medical interventions to stabilize the
individual. According to Dr. Joseph Wolfsdorf of the Children’s
Hospital in Boston, the acute management needs to be followed by a
thoughtful, thorough and ongoing education and training of patients
and family or other care givers. As Dr. Wolfsdorf points out, as soon
as the metabolic disorder is corrected, it is imperative to educate
the patient and the family or other caregivers on the disorder, how
it exerts its effects on the body and most importantly how to control
the disorder and prevent medical crises and complications.
Not only are the medical complications that can arise with inadequate
management costly to the individual in terms of health, activity,
happiness and longevity, but also on the costs on the health care
delivery system as measured by emergency room visits, hospital days
and specialized services procedures. The goal is to make sure
patients who have diabetes stay well and do well and stay out of the
hospital. In order to accomplish this, the critical need for ongoing
education for the patient, the family and all those who come into
contact with the patient. There is also a need for ongoing education
and the availability and accessibility of trained staff to provide
this service. Wolfsdorf contends that investment in education early
on and on a continuous basis is critical to management and long term
health and outcome, yet is not reimbursed.
This scenario is all the more relevant for individuals who have
developmental disabilities.
Individuals with developmental disabilities are more likely to have a
complex set of physical and mental health care needs, are more likely
to have a number of different health care providers and to be on a
number of different medications. In addition, they are less likely to
have a recall of their health care experiences, and treatment
providers are more likely to have someone else, a family member or a
paid service provider serve as informants on behalf of the individual
in treatment. Thus, health care providers are required to spend a
longer period of time gathering information, examining the patient,
formulating the management or treatment plan, and a longer time in
communicating this to the individuals with disabilities, the family
and/or the direct care providers, nurses or health care coordinators.
The financial reality is that the reimbursement for the services
provided in this scenario is very likely to be woefully inadequate
for the time and effort of the physician or health care provider
because it does not fit the acute care reimbursement model and
because the health care insurance that individuals with intellectual
disabilities have is likely to be of public funds through Medicaid or
Medicare the reimbursement with be even lower.
The financial disincentives just described likely contributes to a
dearth of available clinicians.
To further complicate and compromise the health care of individuals
with intellectual disabilities and behavioral health care needs is
the reality that there are few trained specialists in the provision
of health care for this specialized population.
As a society we need to address the needs of our vulnerable
populations and begin to look at a comprehensive approach to
remedying the situation through:
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Education of individuals with developmental disabilities about their
health and health care needs;
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Education for family members and other direct care providers in
understanding the health care needs and services;
-
Education of health care providers to develop understanding and
skills in serving individuals with developmental disabilities;
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Education for the agencies and corporations that design, develop and
provide the health care services; and
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Education for the legislators and financial institutions that plan
and implement health care reimbursement structures and models.
All of this takes resources and a commitment on the part of our
health care delivery system. In order to assure effective health care
for individuals with developmental disabilities we need to provide
training for health care providers on the medical, mental health and
social issues that inevitably arise for people with disabilities and
their families. In addition, a more reasonable compensation strategy
will inevitably lead to improved health in this population and reduce
the current level of health care disparities.
It is incumbent upon us to work together to help to change the
situation and the system because it is ultimately important to all of
us that all citizens in our society receive good quality health care.
References:
Botero D, Wolfsdorf JI., Diabetes mellitus in children and
adolescents. Arch Med Res. 2005 May-Jun;36(3):281-90.
Agus MS, Wolfsdorf JI, Diabetic ketoacidosis in children. Pediatr
Clin North Am. 2005 Aug;52(4):1147-63, ix.
I. Leslie Rubin, and Allen C. Crocker
Medical Care for Children and Adults with Developmental Disabilities,
2nd Edition
Baltimore, Paul Brookes, 2006
Contact:
Leslie Rubin MD
President, Institute for the Study of Disadvantage and Disability,
Atlanta, GA
e mail lrubi01@emory.edu
The “U.S. Public Policy Update” is an ongoing column in the
NADD Bulletin. We welcome your comments, as well as, submissions for
this column. To learn more or to contribute to this column, you may
contact Joan Beasley, chairperson of the U.S. Public Policy
Committee, at jbbeasley@ren.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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