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NADD U.S. Policy Update (from the NADD Bulletin Volume VIII Number 1)Complete listing
Custody Relinquishment: An Avoidable Tragedy
Every year many parents of children who have both developmental and
emotional disorders are faced with an impossible situation. They must
either deny their children the intensive services they desperately
need or relinquish custody to state authorities. This tragic choice
typically arises when a child requires very costly and specialized
care but community-based programs are inadequate. It is not unusual
for private medical insurance to severely restrict mental health care
as well as habilitation for developmental disabilities. If a family
exhausts all available resources, they may be forced to transfer
custody of their child to state authorities in order to access
intensive treatment. The son or daughter is often sent far from home
and the parents lose their ability to monitor the quality of the care
their child receives. This is certainly not a new problem for the
developmental disability community, but it is completely avoidable.
The Bazelon Center for Mental Health Law, which has provided national
leadership on this issue, reports that thousands of families face
this dilemma each year in roughly half of the states. The General
Accounting Office reported (2003) that for fiscal year 2001, more
than 12,700 children were transferred into the custody of state
authorities when parents could not qualify for Medicaid and were
desperate to find needed mental health services. Existing data do not
make clear, though, how many affected families have children with
both developmental and emotional/behavioral disorders. Anecdotal
reports from state officials suggest that many children with
intellectual disabilities or autism and very severe behavioral
disorders may be involved. Thousands of very young children enter
child welfare each year with both developmental disorders and severe
behavior problems which their communities are not prepared to address.
In some states, no distinction is made between parents who place
their children as a last resort to obtain care and those who are
neglectful or abusive. Parents may have to assert that they are
abandoning the child. One can easily imagine the potential
consequences for a loving family and for a child who already has an
emotional disorder and developmental vulnerability.
Among children who go into care, many are placed in child welfare,
but some end up in the juvenile justice system, even if they have
committed no crime. The U.S. Senate's Governmental Affairs Committee
(July 2004) reported that over a six-month period, nearly 15,000
youth in jail were waiting for community mental health services. It
is unclear how many of them entered the system because their parents
could not access appropriate care. Our country's persistent
disparities in access to services, though, are clearly mirrored in
over-representation of Black and Latino youth in detention centers
and jails. Among all youth in custody, the proportion with dual
disorders is thought to be substantial.
Custody relinquishment to access care is not only an unjust practice,
but also a fiscally irresponsible one. It plainly wastes public
funds. The states end up paying for ordinary living expenses that
parent would otherwise gladly cover. Child welfare costs are expanded
and the most expensive institutional care is substituted for more
cost-effective services in the home or community.
Part of the tragedy is that this practice is avoidable. Needed
changes in existing education, child welfare and health financing
regulations have been have been clearly spelled out in documents
published by the Bazelon Center (listed below). Pending federal
legislation such as the Family Opportunity Act (S. 622, H.R. 1811),
would allow families above the usual income levels to buy into
Medicaid on a sliding scale basis and expand availability of home and
community-based waivers. The proposed Keeping Families Together Act
(S. 1704, H.R. 3243) would expand comprehensive interagency services
and provide for state infrastructure to make the expansion possible.
It would also require the federal government and the states to
address the mental health needs of children in public care and report
on the states' success making this kind of custody relinquishment
obsolete. At present, however, it is unclear how effectively the
special needs of children with dual diagnoses would be addressed
through any of this legislation.
Policy Resources
Avoiding Cruel Choices: A Guide for Policymakers and Family
Organizations on Medicaid's Role in Preventing Custody Relinquishment
(2002), Bazelon Center for Mental Health Law, www.bazelon.org
Relinquishing Custody: the Tragic Result of Failure to Meet
Children's Mental Health Needs (2000), www.bazelon.org
Child Welfare and Juvenile Justice: Federal Agencies Could Play a
Stronger Role in Helping States Reduce the Number of Children Placed
Solely to Obtain Mental Health Services (2003) U.S. General
Accounting Office, GAO-03-397, www.gao.gov/new.items/do3397.pdf
General Resources for Families
The Bazelon Center: www.bazelon.org
The State Protection and Advocacy Centers: http://www.protectionandadvocacy.com
The Federation of Families for Children's Mental Health: www.ffcmh.org
Submitted by Diane M. Jacobstein, Ph.D.
Georgetown National Technical Assistance Center
for Children's Mental Health
jacobstd@georgetown.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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