BEST PRACTICES FOR TREATMENT OF DEPRESSION AMONG INDIVIDUALS
WITH DEVELOPMENTAL DISABILITIES
Joe Friedman
B.A., State University of New York, 2003
PROJECT
Submitted in partial satisfaction of
the requirements for the degree of
MASTER OF SOCIAL WORK
at
CALIFORNIA STATE UNIVERSITY, SACRAMENTO
SPRING
2010
BEST PRACTICES FOR TREATMENT OF DEPRESSION AMONG INDIVIDUALS
WITH DEVELOPMENTAL DISABILITIES
A Project
by
Joe Friedman
Approved by:
__________________________________, Committee Chair
Jude Antonyappan, Ph.D.
Date: ____________________________
ii
Student: Joe Friedman
I certify that this student has met the requirements for format contained in the University
format manual, and that this project is suitable for shelving in the Library and credit is to
be awarded for the project.
, Graduate Coordinator
Teiahsha Bankhead, PhD, LCSW
Date
Division of Social Work
iii
Abstract
of
BEST PRACTICES FOR TREATMENT OF DEPRESSION AMONG INDIVIDUALS
WITH DEVELOPMENTAL DISABILITIES
by
Joe Friedman
This exploratory study explored the relevance and availability of treatment practices for
individuals with developmental disabilities (DD) and depression from the perspectives of
professionals who work with this population. Additionally, potential areas of
advancement in the field with regard to developing best practices were explored from the
sixty professionals who participated in an online survey consisting of 15 questions on
current treatment practices for depression among individuals with DD. Overall, the
research findings indicate that individuals with DD and depression are an underserved
population due to the lack of understanding and unsuccessful attempts by professionals in
differentiating between co-occurring diagnoses. The difficulties involved with detecting
depressive symptoms and diagnosing depression among individuals with DD have led to
minimal progress in the development of empirically supported depression treatments. The
research findings reflect the need for increased attention to differentiate depression from
iv
factors associated with DD and develop realistic treatment approaches for treating
depression while managing the challenges associated with DD.
__________________________________, Committee Chair
Jude Antonyappan, Ph.D.
Date: ____________________________
v
ACKNOWLEDGMENTS
I would like to thank the following people for their support and guidance
throughout the last two years as I completed the Masters of Social Work program. To my
project advisors Dr. Susan Taylor, and Dr. Jude Antonyappan, I would like to thank you
both for your encouragement and expertise while I have sat in your offices at times, very
overwhelmed. To my supervisor from when I was employed with Alta California
Regional Center, Amy Westling, thank you for being so patient and understanding with
my vigorous work and school schedule. I would also like to thank my field supervisors,
Ellen Wright, M.S.W, Stephanie Andre, L.M.S.W, and Darina Hul, L.C.S.W. for sharing
their knowledge and encouraging me throughout field training.
I would like to extend my gratitude to Darci Delgado for her consistent support
and guidance, and for sacrificing numerous nights and weekends while I worked on my
many assignments. Lastly, I would like to thank my family, and especially my parents,
Dan and Ann Friedman for always believing in me, even when I didn’t believe in myself.
I love you guys very much.
vi
TABLE OF CONTENTS
Page
Acknowledgments.............................................................................................................. vi
List of Tables ..................................................................................................................... ix
List of Figures ......................................................................................................................x
Chapter
1. INTRODUCTION ...........................................................................................................1
The Problem .............................................................................................................1
Background of the Problem .....................................................................................2
Statement of the Research Problem .........................................................................5
Purpose of the Study ................................................................................................5
Theoretical Framework ............................................................................................6
Definition of Terms..................................................................................................9
Assumptions...........................................................................................................11
Justification ............................................................................................................12
Limitations .............................................................................................................12
2. REVIEW OF THE LITERATURE ...............................................................................13
Introduction ............................................................................................................13
Maltreatment of People with DD ...........................................................................14
Diagnosis................................................................................................................19
Depression Treatments for People with Developmental Disabilities ....................23
vii
Barriers to Treatment Practices ..............................................................................30
Depression Within the General Population............................................................50
Pharmacological Treatments ..................................................................................52
Interpersonal Psychotherapy ..................................................................................53
Limitation Factors with Researching Depression Treatments in DD ....................55
Summary ................................................................................................................56
3. METHODS ....................................................................................................................58
Introduction ............................................................................................................58
Study Design ..........................................................................................................58
Sample Procedures .................................................................................................59
Data Collection ......................................................................................................60
Data Analysis .........................................................................................................61
Human Subjects Protection ....................................................................................61
Limitations .............................................................................................................62
4. FINDINGS ....................................................................................................................63
Introduction ............................................................................................................63
Response Rate ........................................................................................................63
Survey Results .......................................................................................................64
5. SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS ................................89
Summary ................................................................................................................89
Conclusions ............................................................................................................90
viii
Recommendations ..................................................................................................92
Recommendations for Practice ..............................................................................93
Recommendations Relevant for Research .............................................................94
Appendix A. Survey.........................................................................................................100
Appendix B. Informed Consent .......................................................................................104
References ........................................................................................................................106
ix
LIST OF TABLES
Page
1.
Frequency Distribution of Respondents’ Occupational Categories .......................64
2.
Cross-tabulation Between Respondents’ Job Titles and the Type of Regular
Interactions with Clients ........................................................................................66
3.
Frequency Distribution of DSM-IV Axis I and II Mental Illnesses
Observed by Respondents of Their Clients with DD (Multiple Responses) .........71
4.
Frequency Distribution of Most Commonly Observed Symptoms Among the
Respondents’ Clients .............................................................................................73
5.
Frequency Distribution of Most Commonly Used Depression Treatments
by the Respondents ................................................................................................77
6.
Cross-tabulation Between Respondents’ Prevalence of Working with Clients
with DD Who are Diagnosed with Depression and Their Job Description ...........79
7.
Respondents with Direct Client Interaction and Most Commonly Used
Depression Treatment Modality ............................................................................81
8.
Cross-tabulation Between Respondents’ Opinions of Community Resource
Abundance and Job Title ......................................................................................82
9.
Cross-tabulation Between Respondents’ Perceptions of Treatment
Effectiveness and Their Job Title ..........................................................................84
x
LIST OF FIGURES
Page
1.
Respondents’ Highest Level of Education .............................................................67
2.
Level of Experience Working with People with Developmental Disabilities .......68
3.
Respondents’ Determination of the Level of Cognitive Functioning of their
Clients ....................................................................................................................70
xi
1
Chapter 1
INTRODUCTION
The Problem
Treating dual diagnosis with regards to developmental disabilities (DD) and
mental illness is problematic because treatment practices and resources are traditionally
separated. Service provision and funding sources are typically generated from two
different systems and professionals working in the DD field have subsequently found
themselves without appropriate support when their clients experience suspected cooccurring mental illness, such as depression. Coupled with significant budget cuts
encountered by agencies, it has been difficult to develop the necessary treatments to
address this problem appropriately. Fortunately, there has been increased awareness
among professionals, agencies and community members about the lack of treatments
available for those with DD and depression. Despite these new developments that have
brought further attention to the issue, a greater emphasis is needed on educating all
parties involved with developmental disabilities on the additional concerns with treating
depression.
Research undoubtedly shows depression within the general population is a
significant problem that affects more than 19 million American adults each year (The
National Institute of Mental Health [NIMH], 1999). There are implications that increase
risks of heart disease in depression, and it has become the leading cause of disability
(NIMH, 1999). In addition to having a negative impact on one’s health the treatment
2
costs are a financial drain on our economy and are becoming increasingly expensive.
NIMH (1999) reports the associated costs are over $30 billion each year. Young,
Weinberger, and Beck (as cited in Barlow 2001) reports that in 1990, depression was
ranked fourth of most costly among illnesses worldwide, and by 2010 estimates indicate
it will be the second most costly to treat.
We also know that society uses a significant amount of resources to aide
individuals with developmental disabilities (DD) to increase their quality of life. In the
state of California, over 232,000 people with DD are enrolled in their local regional
center and are receiving case management services. Providing these services to
individuals with DD also leads to a huge financial strain in our society as the California
State budget indicated expenditures of over $4.6 billion for the 2009-2010 fiscal year
(California Health and Human Services Agency, 2010). This problem is increasing with
the prevalence of other developmental disabilities such as Autism. Given the current
problems involved in treating depression and the problems involved with comprehensive
services and treatments to people with DD, it is understandable that depression in people
with DD poses significant contributions to the existing problems associated with both
populations.
Background of the Problem
There are several empirically supported treatments that are currently widely
utilized by practitioners to treat depressive symptoms in the general population such as
cognitive therapy, cognitive behavioral therapy (CBT), interpersonal therapy, and
3
pharmacological interventions (Ingram, Miranda, & Segal, 1998). When treating
depression amongst the general population, clinicians have a variety of interventions that
can be utilized in improving the depressed individual’s quality of life. For example, if one
method is ineffective practitioners may choose another empirically supported
methodology and implement the treatment component with confidence.
Moreover, tools used in therapy settings such as personal reflection, self-reporting
of symptoms, identifying complex emotions, and cognitive processes are all important
aspects of depression treatments within the general population. Unfortunately, these tools
may not always translate smoothly when attempting to improve symptoms of depression
in individuals with DD.
There is a lack of abundant treatment modalities available for individuals with DD
and depression because of minimal success in research findings. Limited progress in
identifying empirically supported research is due in large part to ineffective measures in
properly detecting depressive symptoms. Practitioners have been unsuccessful
developing a universal framework that consistently indentifies mood, gestures or
behaviors as appropriate symptoms of depression. In addition, researchers have been
unable to generate an abundance of diagnostic measures that result in appropriately
diagnosing depression in individuals with DD. Therefore, the lack of empirically
supported depression treatments within the DD population makes it difficult for
researchers to endorse any type of treatment.
4
There are several barriers encountered in detecting symptoms in people with DD
that make it difficult for professionals to distinguish between depression and
characteristics of one’s developmental disability. Individuals with DD tend to exhibit
immaturity, impatience, and anger differently which is problematic for professionals
devising treatment plans to improve client’s depression symptoms (Glick & Zigler,
1995). When a person feels depressed they have negative perspectives towards
themselves and others, and it has been suggested that individuals with DD may react or
cope with their depression by displaying aggressive behaviors. There is minimal research
or conclusive evidence to support this, therefore professionals and support persons
continue to lack viable solutions in helping the person recover from their depression.
With limited viable depression treatments available, professionals struggle to
meet agency, community, and family standards in effective service delivery with DD and
depression. State-run agencies responsible for providing sustainable services to
individuals with DD such as Alta California Regional Center are expected to improve
conditions for consumers struggling with mental illnesses. Professionals working in such
agencies are seeing marginal results with improving practices for individuals with
depression due to the lack of viable treatment options.
Family members, caregivers, and professions often struggle with stagnant
treatments as they so often witness their clients, friends, or family member suffer from
depression without practical methods that adequately improve the situation. Lacking
accessible empirically supported literature for individuals with DD and depression has
5
been discouraging to professionals and family members who want to help, because they
often lack proper guidance to improve conditions. Further instruction is needed to
enhance competencies in observing, understanding, and reporting symptoms of
depression with individuals with developmental disabilities. Without advancements in
these areas of research and practice, the individual’s supportive network will continue
making minimal progress decreasing depressive symptoms, and will remain pessimistic.
Statement of the Research Problem
As discussed in previous sections that detailed the background of the problem, an
important aspect of working with individuals diagnosed with developmental disabilities is
the need to distinguish between symptoms of depression from deficits associated with
their developmental disability. As illustrated in the background of the problem,
professionals are not typically accustomed to effectively making this distinction, and do
not typically utilize what they feel are reputable modalities. This research problem
consists of exploring the treatment modalities being used in working with individuals
with developmental disabilities whom also experience symptoms of depression.
Purpose of the Study
The purpose of this study is to explore the current practices being used in
treatments for individuals with depression and DD. To accomplish this, the researcher
will conduct a literature review that focuses on the following issues: 1) The challenges
encountered by family, caregivers and clinicians in assessment of depression and DD; 2)
Characteristics involved in diagnosing depression and DD; 3) Current data on theoretical
6
frameworks being used in treating depression symptoms in individuals with DD; 4)
Empirically supported depression treatments that are widely used within the general
population; and 5) Current research findings with treatment depression in individuals
with DD. This information aspires to provide the reader with a brief working knowledge
of available research and treatment options. In addition to reviewing the literature on
these aspects, the researcher will report the findings from an online survey that was
administered to professionals who work directly with the DD population. Participants
were asked to provide feedback regarding the specific treatments they utilize to address
depression in individuals with DD. By acquiring professional’s perspectives with direct
access of treatment modalities, the researcher hopes to gain a better understanding of the
current practices being used, what practices are effective, and where additional research
is needed. Lastly, the research will gather all of the information acquired from the
literature and the data collection, and provide recommendations for best practices for
treatments.
Theoretical Framework
The exploration of this study is conducted by utilizing a cognitive theoretical
framework towards treating depression. The leading theory on treating depression
amongst the general population is Beck’s cognitive theory of depression (Esbensen &
Benson, 2007). Beck (1967) suggests that schemas are an important component when
explaining the origin of this theoretical framework. Schemas are stable organizing rules
and procedures that guide individual’s tendencies to process information. If an individual
7
develops a pattern of interpreting stressful events as negative, they form negative
schemas, which are also known as cognitive distortions (Beck, 1967). A depressed
individual automatically interprets situations negatively and encounters difficulty with
perceiving events rationally and from another person’s perspective. Beck (1967)
proposed this pervasive negativity leads to cognitive distortions. Thus, a cognitive triad,
containing negative views of self, of others, and of the world around them is developed
by the individual. A cognitive triad causes the individual to consider themselves as
inadequate, feels the world is full of obstacles, and interprets environmental interactions
negatively (Esbensen & Benson, 2007). Moreover, the cognitive triad causes a
predisposition to depression within individuals, and inflicts a cycle of depressive
thoughts.
Given the widespread use of cognitive theory among the general population,
researchers have discovered its potential as an effective treatment with the DD
population, especially with mild to moderate functioning abilities. Studies have showed
positive results in lowering depression with Beck’s cognitive triad, and certain measures
exhibiting potential effectiveness in collecting data (Lindsay, 1999; McCabe,
McGillivray, & Newton, 2006). Therefore, by using successful measures in detecting
depressive symptoms through Beck’s (1967) cognitive triad concept, it is hopeful that
future discoveries on improving depression treatments for the DD population will be
made. Despite these potential outcomes, more empirical evidence with a larger pool of
8
participants is needed before modern applications are widely utilized to treat depression
with DD.
An ecological systems framework is another effective modality when applying it
to the DD population. This perspective suggests that all persons, objects and systems
within an individual’s environment are inter-related with one another. Knowledge of the
diverse systems involved within a person’s interactions between other people and their
environment is the primary component in ecological systems theory. Hepworth, Larsen,
and Rooney (2002) indicated several examples of such systems to include: 1) Subsystems
of the individual (cognitive, behavioral, emotional, behavioral); 2) Interpersonal systems
(Family or friend involvement, social networks, spiritual belief systems, other support
systems); 3) Communities and organized institutions; and 4) The person’s physical
environment (housing, neighborhood environment, climate). No two systems are alike,
meaning people do not simply react to environmental factors. Instead, they react to their
environments which shape the responses of other people groups, institutions and physical
subsystems (Hepworth et al., 2002).
When considering the ambiguity in detecting depression among people with DD,
it is helpful to use a broad scope that allows practitioners to analyze all of the variables
involved in this problem. This theoretical framework provides the flexibility to assess the
problem sources and determine the best course of intervention by accessing the
individual’s environment subsystems. As a result, there are a variety of outlets one can
utilize to develop a positive and healthy identity.
9
Definition of Terms
Autism is a syndrome that inhibits the growth of social, emotional, and sensory
development. Approximately 80% of persons with autism also have mental
retardation. Onset of autism is typically made between the ages of two and four,
and it affects less than 1% of the general population. Autism is considered a
developmental disability and a qualifying diagnosis for California regional center
services (ALTA California Regional Center, 2008).
Depression is classified as a mood disorder because disturbance in mood is a primary
feature of the illness. There are several different types of depression; Major
Depressive Disorder, Dysthymic Disorder, Bi-Polar (I & II) Disorder, and
Depressive Disorder NOS (APA, 2000). Symptoms as defined in the Diagnostic
and Statistical Manual, 4th edition, Text Revision (DSM-IV, TR) (APA, 2000) are
as follows: 1) Depressed mood (or irritable mood in children and adolescents) for
most of the day, nearly every day, as indicated by subjective account (e.g. feels
sad or empty) or observation by others. 2) Markedly diminished interest or
pleasure in most activities. 3) Significant weight loss or gain, decrease or increase
in appetite. 4) Insomnia or hypersomnia. 5) Psychomotor agitation or retardation.
6) Fatigue or loss of energy. 7) Feelings of worthlessness, or excessive or
inappropriate guilt. 8) Diminished ability to think or concentrate or
indecisiveness. 9) Recurrent thoughts of death, suicidal behavior or statements.
Each disorder is diagnosed differently into these sub-categories, but remains
10
within the umbrella definition of depression. When describing depression and
depressive symptoms in this study, the researcher will focus on consumer/client’s
general diagnosis of depression unless otherwise specified.
Developmental Disability (DD) refers to an individual who is determined to have at least
one of the following diagnoses: Mental Retardation, Autism, Epilepsy, and
Cerebral Palsy (Department of Developmental Services [DDS], 2009b). It is
typically a long-term or lifelong condition in which ongoing assistance by social
services agencies is recommended in most cases. The severity of one’s
Developmental Disability varies significantly between each individual, which
predicts the frequency and intensity of agency support needed. In most cases,
California Regional Centers are designated to provide comprehensive services to
persons with DD.
Mental Retardation refers to a person’s cognitive functioning levels. The terms
intellectual disability and learning disability are commonly used internationally
when referring to this population. An individual with mental retardation possesses
significant limitations in areas of adaptive functioning. These areas may include:
communication, work, hygiene, independent living skills, social/interpersonal
skills, functional academic skills, and safety (American Psychiatric Association
[APA], 2000). One’s intellectual functioning is determined by the intelligence
quotient (IQ) which is an extensive standardized assessment created to measure
intelligence. Typically, a diagnosis of mental retardation is warranted when an
11
individual scores a 70 or below on the IQ (two standard deviations below the
mean. There are four different levels of mental retardation as determined by the
IQ score; Mild (IQ between 55 and 70), Moderate (IQ between 40 and 55), Severe
(IQ between 25 and 40), and Profound (IQ of 25 or below) (APA, 2000). In
addition, if an individual scores between 70 and 80 on the IQ test, but displays
significant delay in at least two areas of adaptive functioning, a diagnosis of
Borderline Intellectual Functioning may be diagnosed.
Regional Center is a California state funded agency that provides a variety of services to
California residents with qualifying developmental disability diagnoses. There are
21 regional centers throughout the state.
Assumptions
The researcher makes a core assumption when referring to individuals with DD.
For purposes of this study, the researcher only refers to Mental Retardation, and Autism
(to a lesser degree) when describing experiences of individuals with DD who also suffer
from depression. Therefore, when describing research for treatments with individuals
with DD and depression, the researcher is not referring to every individual who identifies
as having a developmental disability. Despite running the risk of confusing the reader, the
researcher feels it is of most importance to use the most politically correct terminology
that depicts this population in a positive manner. The term mental retardation has
become acknowledged over the years as slightly discriminatory towards persons with
DD. Rather, the term developmental disability (or DD) has become widely used in the
12
United States. Thus, for consideration purposes, the term DD will be used when referring
to individuals with mental retardation.
Justification
The researcher believes that contributions to the field of social work and
developmental disabilities can be achieved in a number of ways. First, the literature will
reveal existing research pertaining to already attempted modalities and areas for
exploration in new developments. This will instantly provide social workers with
numerous researchers’ perspectives on existing treatments with depression and DD in an
organized and concise manner. Secondly, surveying professionals with relevant
experience to the target population will provide opportunity to obtain current perspectives
on best practices for treatments. Lastly, the researcher will utilize the information
acquired from the literature review, and data collected from the survey.
Limitations
The researcher’s purpose is limited to gathering existing data from professionals
and authors in hopes of further clarifying how current practices approach this problem.
Therefore, this study may be limited to readers who already examined the current
treatments and are looking for new innovative modalities.
13
Chapter 2
REVIEW OF THE LITERATURE
Introduction
The researcher of this study has identified an area of concern in regard to the lack
of appropriate treatments for individuals with developmental disabilities (DD) who are
also experiencing symptoms of depression.
In reviewing the literature, it was evident that the use and definition of the word
developmental disability (DD) is both subjective and different across studies. According
to the Department of Developmental Services (DDS,), a developmental disability refers
to a severe and chronic disability that is attributable to a mental or physical impairment
that begins before an individual reaches adulthood. These disabilities include mental
retardation, cerebral palsy, epilepsy, autism, and disabling conditions closely related to
mental retardation or requiring similar treatment (DDS, 2009b).
The researcher intended to primarily incorporate individuals with Mental
Retardation in the studies which characterized by global developmental delay, an IQ
below 70, and poor adaptive skills (APA, 2000; Hassiotis, 2002). There have been
barriers in obtaining exclusive studies on individuals with mental retardation. The term
mental retardation has become frowned upon in modern society because of its
stigmatization in people with disabilities and is considered by the majority to be offensive
and discriminatory. As a result of this increased conscientiousness, recent literature either
re-categorizes the word mental retardation by using “DD,” or refers to it by a different
14
definition (Hassiotis, 2002). For example, in the United States, professionals often use the
term “Developmental Disability” despite mental retardation being a sub-scale within the
DD definition. The researcher is accustomed to using DD when mentioning people with
mental retardation. The United Kingdom uses the term “learning disability,” whereas
other European countries use the word “Intellectual Disability” (Hassiotis, 2002; HornerJohnson & Drum, 2006). In order to avoid confusion with readers throughout the globe,
the term DD will be used throughout this study when discussing people with mental
retardation. If a study involves another sub-group of developmental disabilities such as
individuals with Autism, then the sub-group will be referred. For example, a couple
studies involve individuals with Autism. They will be referred to as individuals with
Autism, rather than DD.
Maltreatment of People with DD
Before providing literature on clinical treatments, diagnosis and assessment of
depression with DD, it is important to briefly describe some of the past and present
challenges individuals endured with maltreatment within society. It has been asserted that
individuals with DD are five times more likely to be mistreated than a person without a
developmental disability (Sobsey as cited in Horner-Johnson & Drum, 2006). This is
significant problem in society because depressive symptoms or psychological
disturbances may develop in a person with DD if being maltreated by others. According
to Horner-Johnson and Drum (2006), maltreatment may consist of the following: 1)
15
Physical abuse; 2) Sexual Abuse; 3) Verbal, psychological, or emotional abuse; 4)
Neglect; and 5) Financial exploitation.
Although people without disabilities are subject to the same types of
mistreatment, having a cognitive or physical disability may also put individuals at risk for
unique forms of abuse. For example, people diagnosed with mental retardation can be
easily targeted by perpetrators for financial exploitation and robbery. Unfortunately, it is
a common occurrence for individuals with DD to be manipulated by family members
who pretend to have the person’s best interest at heart (Horner-Johnson & Drum, 2006).
The victims are often coaxed into giving money, which may subsequently lead to
experiencing financial hardship. This may also create difficult and long-term problems
that force the victim to re-locate or have bad credit or debt. This may generate additional
emotional and psychological distress for a person with DD that leads to depressive
symptoms (Horner-Johnson & Drum, 2006).
Maltreatment continues to be a major concern amongst individuals with DD.
However, there have been developments suggesting that widespread maltreatment of this
population is decreasing. First, there are legal mandates in place that require agencies to
implement services and supports for the benefits of all persons with DD. In California,
the Lanterman Act was passed in 1977 and has had a profound impact for the protecting
the rights of individuals with DD (DDS, 2009a). California legislature appoints the
Department of Developmental Services (DDS) to oversee the ongoing provision of
comprehensive services for individuals with developmental disabilities. DDS contracts
16
with 21 Regional Centers throughout the state of California to provide and coordinate
services specifically for the needs of these individuals (DDS, 2009c). These non-profit
private centers have offices throughout California, and it is their duty to develop services,
and provide access to individuals and their families (DDS, 2009c). Some of the services
and supports provided by the regional centers include: 1) Information and referral; 2)
Assessment and diagnosis; 3) Lifelong individualized planning and service coordination;
4) Assistance in finding and using community and other resources; 5) Advocacy for the
protection of legal, civil and service rights; 6) Planning, placement, and monitoring for
24-hour out-of-home care; and 7) Training and educational opportunities for individuals
and families (DDS, 2009d).
Another positive development for people with DD has been the movement for
deinstitutionalization into community-based settings. Over the last 10 years, the closing
of institutional settings generated opportunity for community-based treatment settings
and a stronger emphasis on client-directed care and treatment planning (Hassiotis, 2002).
Hassiotis (2002) conducted a review study about the best practices for individuals with
DD who have significant behavioral needs, living in community settings. Community
treatment teams consisting of a multidisciplinary approach have become a preferred
treatment model in maintaining their success in the community (Hassiotis, 2002). There
are various applications of community treatment teams, but they typically focus on
bringing comprehensive services to the individual within their natural environment.
17
These models literally function as a mobile unit, and are meant to serve as a viable
alternative to institutionalization treatments.
The particular model referenced by Hassiotis (2002) is called Community Support
Teams (CST), using Applied Behavioral Analysis (ABA) interventions with a
multidisciplinary treatment team in the person’s home. In CST, the behaviorist
implements specific intervention plans, and has three or four full-time direct-care staff to
monitor client’s behavioral needs. The core components of the community support teams
focus on prevention, early intervention, provision of technical support and crisis
intervention, and development of alternative placement (Hassiotis, 2002).
Similar to the CST, the Assertive Community Treatment (ACT) team is another
multidisciplinary model that provides mobile and comprehensive services, striving to
keep individuals with co-morbid illnesses in the community. ACT model was originally
designed for persons with serious and persistent mental illness in the 1970s and has since
been applied to various sub-groups including people with DD and depression (King,
Jordan, Mazurek, Earle, Earle, & Runham, 2009). King et al. (2009) analyzed a
specialized ACT-DD model (individuals diagnosed with DD and an axis I diagnosis) in
Brockville, Ontario, Canada and its impact on the client’s quality of life from 1998 to
2006. The researchers conducted a chart review of 43 clients served by the ACT-DD
team during the summers of 2004, 2005, and 2006. They also reviewed the number of
client hospitalizations before and after the program’s interventions began.
18
The Brockville team consists of a team leader, a part-time physician, five nurses
(RNs), community support workers, a vocational instructor, two social workers, two
behavioral consultants, and a consulting psychiatrist (King et al. 2009). The Brockville
ACT-DD team utilizes multiple modalities while establishing and maintaining
relationships with many community-based agencies. They are capable of providing an
array of services to benefit their clients which include: 1) Pharmacology; 2) Behavioral
Analysis; 3) Vocational; 4) Leisure activities; 5) Group psychotherapy; 6) Individual
Psychotherapy; 7) medical/nursing care; and 8) Substance abuse rehabilitation (King et
al. 2009). The treatment is individualized to fit the client’s specific needs, services are
flexible, and staff is on-call 24 hours per day to handle crisis situations.
As a result the study, researchers found that the Brockville ACT-DD team has
been successful in the overall increase of their client’s quality of life (King et al. 2009).
Many of the clients referred to the program had previously experienced long periods of
institutionalization and psychiatric hospitalization. King et al. (2009) found that client’s
overall rates of institutionalization (including psychiatric hospitalization) had
substantially decreased upon enrollment in the Brockville ACT-DD team. These rates
were measured by total amount in frequency and number of days. Before program
enrollment, clients had 217 total hospitalizations for a total of 60,550 days. Once
enrolled, hospitalizations occurred on 72 instances, for 3,001 days (King et al. 2009).
After reviewing the literature on community treatment teams, there is evidence of this
model to be effective for improving widespread conditions amongst people with DD and
19
mental illness. While the operational costs of these community treatment models are
high, it is a cost-effective service in comparison to costs of hospitalization, making it
even more desirable as an alternative to inpatient programming (King et al. 2009).
Diagnosis
Much of the difficulties in determining best practices for viable treatments for
depression with people with DD is associated with historical complications in diagnosis
of depression in people with DD. Diagnosing is conducted by psychological evaluation
from a psychologist, which is usually completed at the local school district, Regional
Center, or by an independent contractor (ALTA California Regional Center, 2008). Once
a diagnosis is determined, Regional Centers utilize the Client Development Evaluation
Report (CDER) which is an instrument universally used (statewide) to collect diagnostic
and evaluation information on individuals with developmental disabilities. When a
regional center case manager coordinates outside services for clients, the CDER serves as
a gauge for outside providers in determining the appropriate supports the client requires.
According to the State of California- Health and Human Services Department
(2008), the CDER documents the person’s needs and capacity for independence in a
variety of skill levels which includes: 1) Activities of Daily Living (ADL); 2)
Communication and social interaction with others; 3) Safety awareness; 4) Coping
abilities in familiar and unfamiliar settings; and 5) Challenging behaviors (includes
physical and verbal aggression, self-injurious, and property destruction) (DDS, 2009c). A
CDER is reviewed and updated by a regional center case manager or liaison on each
20
individual annually. The CDER is a useful tool because provides professionals
(behaviorists, therapists, psychiatrists, and residential and vocational service providers)
with a general framework of the client’s presenting issues (DDS, 2009c). However, the
circumstances for people with DD and depression may change abruptly, impacting the
level of support that is needed. Since the CDER typically is updated annually, it is often
outdated and provides professionals misinformation on the capacity of the client’s needs.
When determining a diagnosis of depression in a person with DD, standard
criteria used with general populations such as the DSM-IV-TR (2000) has also been
utilized within the DD population (McBrien, 2003; McCabe et al., 2006; McGuire &
Chicoine, 1996). Though these standard tools demonstrated usefulness for purposes of
diagnosing depression within the DD population, it lacks specificity with addressing the
issues of problem behaviors (Fletcher, Havercamp, Ruederich, Benson, Barnhill, Cooper,
& Stavrakaki, 2009). Given the well-documented difficulties with depressive symptom
detection and self-report within the DD population, the DSM-IV’s (APA, 2000) inability
to account for such variables continues to limit its potential as a superior diagnostic tool
for people with DD. The lack of specific criterion has contributed to the stagnant
developments of treatment practices in the field. However, a new diagnostic manual was
recently created to specifically improve diagnosis for people with DD who also have
symptoms of psychiatric illness.
The Diagnostic Manual-Intellectual Disability (DM-ID) (Fletcher, Loschen,
Stavrakaki, & First, 2007) was developed by an expert consensus from the NADD
21
(Association for person with developmental disability and mental health needs) in
association with the APA (American Psychiatric Association) and was designed to be a
revision of the DSM-IV-TR (Fletcher et al., 2009). The DM-ID (Fletcher et al., 2007)
provides guidance for assessing and diagnosing specific disorders. For example, this
manual provides insight on recognizing challenging behaviors of individuals with
intellectual disability, and on how to differentiate behavioral problems from psychiatric
disorders (Fletcher et al., 2009). A problem in the field of developmental disabilities and
mental illness consists of not having a diagnostic system, and clinicians have had to use
other non-specific criteria. Therefore, individuals with DD, suffering from symptoms of
mental illness may not have received a psychiatric diagnosis, or an inappropriate
diagnosis. The DM-ID (Fletcher et al., 2007) is a monumental achievement within the
field of DD because a primary dilemma in the literature includes professional’s inability
to differentiate behaviors from clinical mental illnesses.
To assess the DM-ID’s (Fletcher et al., 2007) clinical usefulness, Fletcher et al.
(2009) conducted a field study to determine if clinicians were able to make more specific
diagnoses of psychiatric illnesses and if the new manual was more user-friendly than the
DSM-IV-TR. The DM-ID (Fletcher et al., 2007) editors and an advisory board designed a
survey tool to send out to participants. There were a total of 63 clinicians who completed
845 surveys to each of their patients with DD, and a suspected, or diagnosis of mental
illness. The participants were 63 clinicians who were involved in the initial development
of the DM-ID (Fletcher et al., 2007) whom had previously agreed to conduct in this
22
study. These clinicians were mainly psychologists (42.9%) or psychiatrists (31.7%). The
remaining 25.4% of participants included psychology assistance / counseling (N=2),
social worker (N=2), nursing (N=3), and a medical registrar (N=1) (Fletcher et al., 2009).
The survey included several yes/no questions and rating scale questions in which
participants were asked to provide feedback on the DM-ID’s (Fletcher et al., 2007)
overall usefulness in helping arrive at an appropriate diagnosis. Some of these questions
included: 1) Was the DM-ID user friendly? 2) Did the DM-ID allow you to come up with
a more specific diagnosis than you would have with the DSM-IV-TR? 3) Did the DM-ID
help you avoid using the NOS category? (Fletcher et al., 2009).
Results showed that clinicians had positive impressions of the DM-ID. Sixtyseven and nine-tenths percent of respondents rated the manual as “easy” to use, and
specified it was also clinically useful with new patients. Both of the psychology and
psychiatry group of participants indicated that the DM-ID (Fletcher et al., 2007) allowed
them to arrive at a more specific diagnosis compared to the DSM-IV-TR (APA, 2000).
Another important finding in this study was that the DM-ID (Fletcher et al., 2007)
effectively distinguished between mood disorders, anxiety disorders, psychotic disorders,
and pervasive developmental disorders (Fletcher et al., 2009). Furthermore, participants
reported that the DM-ID (Fletcher et al., 2007) showed enhanced ability to discriminate
between the varying mood disorders, and forms of depression.
Ultimately, the DM-ID (Fletcher et al., 2007) shows significant potential in being
an effective diagnostic manual in determining diagnoses of mental illness among
23
individuals with DD. However, there is a limitation in this study that consists of using
participants that were involved in the manual’s original design. As discussed by Fletcher
et al. (2009), there are concerns involved with those having a vested interest in this study
receiving positive feedback. Although efforts were made by the researchers to eliminate
certain biases, it is something to be made aware of.
Depression Treatments for People with Developmental Disabilities
Given all these problems and difficulties as well as limited information in
examining the treatments for depression in DD, we will start by looking at each
component separately. Several challenges involving assessment and diagnosis of
depressive symptoms in people with DD have previously been described. These barriers
lead to ongoing difficulties in facilitating and implementing effective treatments to
improve symptoms when co-occurring conditions are present. It has been stated that 40%
of individuals with DD have clinically significant levels of behavioral and emotional
concerns that lead to increased difficulties with quality of life issues, and often require
specialized interventions (Dykens, 2007). Basic challenges clinicians encounter in
treatments is being able to differentiate between mental illness and development
disabilities. Clinicians often disregard the possibility of depression and assume that
increased sadness or irritability is a direct result of their client having a developmental
disability (Dykens, 2007).
24
Cognitive Therapy
Research has shown that cognitive behavior therapy (CBT) has the potential of
being an effective model used in treating depression in people with mild DD (Dagnan &
Chadwick, 1997; Lindsay, 1999; McCabe et al., 2006). CBT possesses many similarities
to Beck’s cognitive theory, while providing an added behavioral component to therapy
with clients. For example, cognitive therapy aims to help the client to become aware of
thought distortions, which are causing psychological distress, and of behavioral patterns
which are reinforcing it (Barlow, 2001). The CBT therapist also utilizes behavioral
patterns to correct the distress. Both the cognitive and CBT modalities would only
logically work when applying to people with DD who have verbal capacities. Individuals
functioning in the profound and severe range will not likely benefit from this treatment
due to the constant application of verbal processes throughout therapy.
Research demonstrates CBT to be effective when applied to people with DD ingroup settings. In a study by McCabe et al. (2006), a CBT intervention program was
administered to 34 total participants in which, 19 of the participants had mild DD and
fifteen served as the control group. There were five group sessions (four or five
participants per group) that were held once every week, lasting two hours in length.
Every group session included a theme and some of the underlying themes consisted of:
understanding depressive symptoms, the importance of a social network, working
through negative thought patterns, and developing problem solving strategies (McCabe et
al., 2006). Participants were given a pre-test, post-test, and a three month follow up that
25
measured depression, self-esteem, social comparisons, and automatic thought patterns.
McCabe et al. (2006), used the following scales to measure each characteristic: BDI-II
measured depression; the Social Comparison Scale (SCS) was used to measure social
comparison; Rosenberg Self-esteem Scale (RSES) measured self-esteem; and Automatic
Thoughts Questionnaire-Revised (ATQ-R) measured automatic thought patterns.
The results concluded that the treatment group participants had significantly fewer
negative thoughts and lower depression scores during the post-test and three-month
follow-up than prior to the treatment program. In addition, results demonstrated a greater
improvement in functioning levels of self-esteem, depression, and level of automatic
thoughts than the control group (McCabe et al., 2006). Participants responded well to
small groups of four to five people and felt that were in a respectful therapeutic
environment that was safe from social embarrassment or ridicule. A larger group may
decrease participant’s comfort level in-group settings which is an important consideration
when designing similar studies for future research. The findings also indicated that
developing social support between clinicians and participants was a key component in
optimizing genuine and thoughtful responses (McCabe et al., 2006). Social networks are
often difficult for individuals with DD and they encounter barriers in sustaining
meaningful relationships, which may often contribute to depressive symptoms.
Another study conducted by Esbensen and Benson (2007) evaluated cognitive
theory and its appropriateness for adults with depression and DD. The study consisted
twelve individuals with mild or moderate DD and depression, and a control group of 48
26
individuals with mild or moderate DD without depression. Participants took part in two
semi-structured interviews, 16 weeks apart and consisted of the same questions each
time. The purpose of the control group was to gauge cognitive theory’s ability to improve
depressive symptoms in people with DD and depression. The content of interview
contained areas on depressed mood, hopelessness, self-esteem, and the cognitive triad as
measured by views of the self, others, and the world around them. Results indicated that
cognitive theory can be applied effectively to improve depressive symptoms in people
with DD. However, Esbensen and Benson (2007) determined that further research is
needed because they could not distinguish specifically how to accomplish this. Although
the interviews successfully identified potential depressive symptoms, they didn’t find
significant differences between the depressed group and control group responded
similarly. For example, these results could assume that individuals with DD as a whole
do not have very positive views of the world, regardless of a depression diagnosis
(Esbensen & Benson, 2007). Although this study shows potential in learning more about
onset of depressive symptoms in people with DD, more conclusive evidence is needed in
future research.
Given cognitive theory’s widespread use among the general population,
researchers have discovered its potential as an effective treatment with the DD
population, especially with mild to moderate functioning abilities. Studies have showed
positive results in lowering depression with Beck’s cognitive triad, and certain measures
have exhibited potential effectiveness in collecting data (Lindsay, 1999; McCabe et al.,
27
2006). Therefore, by using successful measures in detecting depressive symptoms
through Beck’s cognitive triad concept, it is hopeful that future discoveries improving
depression treatments for the DD population will be made. However, more empirical
evidence with a larger pool of participants is needed before modern applications are
widely utilized to treat depression with DD.
Psychopharmacology
The use of psychopharmacology in treating depressive symptoms is one of the
most commonly used interventions with people with DD (Clark & Gomez, 1999; Lowry,
1998; Meins, 1996). Psychotropic medications are frequently used in people with DD to
treat psychiatric disorders such as schizophrenia, depression, bipolar disorder, and
anxiety disorders (Curtis, 1997). It is reported that approximately 57%, of all individuals
with DD living in institutions are prescribed psychotropic medications, 41% living in
community settings, and 22% in school settings (Curtis, 1997). Psychotropic medication
cycles are commonly prescribed to individuals with DD to control “maladaptive”
behaviors, which consists of aggression, hyperactivity, self-injury, and disruptive or
inappropriate social behavior (Curtis, 1997). In many instances, these “maladaptive”
behaviors are not clearly defined, and a psychiatric illness is not diagnosed before such
interventions are determined. This is a serious, but common dilemma for practitioners
working with this population who advocate for their client’s rights and best interests
(Burt, 1999; Lowry, 1998). On one hand, it is important for practitioners to advise their
clients on the precautions, risks, and negative effects of the medications. On the other
28
hand, it is also important to identify changes in behavior that may possibly be symptoms
of a psychiatric illness, and help the client address their symptoms as soon as possible.
Even though evidence base for pharmacological interventions of depressive
symptoms in people with DD does not exist, it is estimated that nearly half of all adults
with DD living in the community are prescribed psychotropic medications (Sturmey,
2004). Recent studies indicate mixed results and concerns regarding the use of
psychotropic medications to address symptoms of depression. Lowry (1998) attributes
excessive use of psychotropic medication in people with DD to be a major contributor in
complicating diagnosis. For example, prescribing an antipsychotic medication may
experience excessive drowsiness since sedation is a common side effect (Burt, 1999).
Therefore, since vegetative symptoms such as sleep disturbance are also criteria for
depression, symptoms in people with DD are at risk of being misrepresented (Burt,
1999). In addition, anticonvulsant medications are known to increase depressive
symptoms, which remain an ongoing barrier given the prevalence of epilepsy in people
with DD (Burt, 1999).
Despite complications and concerns pertaining to the use of psychotropic
medications, there has been positive evidence of improving depressive symptoms. In a
study by Perry, Marston, Hinder, Munden, and Roy (2001), 27 individuals diagnosed
with autism and moderate or severe mental retardation, and whom were referred for
evaluation due to recent increase in behaviors. Of the 27 participants, 19 received a
“psychiatric disorder,” and 12 were thought to be depressed (Perry et al., 2001). The
29
depressed participants were administered antidepressant medications. On terms of clinical
judgment, seven of the participants were found to have significantly less behaviors within
the expected time scale effectiveness for the medication (Perry et al., 2001).
All clinicians and social workers with this population should have a general
understanding of the medication effects, benefits, and risks that are being prescribed to
their client. Given all the complexities of pharmacologically treating symptoms of
depression in people with DD, it is essential to monitor any changes and/or symptoms in
the person that result from the medication. Medications should be maintained at least two
to three months at therapeutic doses of levels to adequately determine efficacy, and it
should be discontinued if there is no evidence of improvement, or if side effects outweigh
the benefits (Curtis, 1997).
The key to appropriate usage is people with DD, is to rule out environmental
causes of the problematic behavior before prescribing pharmacological interventions.
Self-injurious behavior (SIB) and aggression are the two most common types of
behaviors among individuals with DD that result in referrals to psychiatrist (Hogue,
Mooney, Morrissey, Steptoe, Johnston, & Lindsay, 2007). SIB is prevalent in people with
severe and profound DD and is defined as any chronic, repetitive behavior that results in
physical injury to one’s own body (Curtis, 1997). Aggression consists of physical contact
towards others, verbal aggression, or property destruction. Reasons that may cause
aggression and/or SIB to occur include: 1) The individual’s inability to communicate
his/her needs, ideas, or feelings; 2) Pain from medical illness and/or dental problems; 3)
30
Environmental influences (the individual is unhappy with another person, or dislikes
his/her immediate location); 4) The person is experiencing a psychiatric disorder, or
depressive episode (Curtis, 1997). The literature suggests that antipsychotic medications
are the most commonly used psychotropic in treating and decreasing these behaviors, but
does not clearly specify how this is achieved. Many antipsychotic medications are
composed of sedative effects, and they contribute to suppression of behaviors (Curtis,
1997).
Barriers to Treatment Practices
Detecting Symptoms
Assessing and treating depression in the DD population is a big problem due to
difficulty detecting symptoms, uncertainty with validity of diagnostic criteria and limited
treatment research. Research indicates significant difficulties detecting and diagnosing
symptoms of depression with individuals with developmental disabilities (O’Brien,
2002). One reason why detecting depression symptoms is difficult is the lack of
communication skills involved in expressing negative feelings that would otherwise be
articulated by individuals in general population. The most commonly used models of
depression assessments incorporate verbal self-reporting to the clinician. The clinician
may also gather information from the individual’s non-verbal signs or symptoms (i.e.
psychomotor agitation). For this reason, assessments rely heavily on the individual’s
ability to communicate their symptoms, and may fail to detect depression properly in
alternate circumstances. For example, Carpenter (2007) researched verbal and non-verbal
31
communication deficiencies among adults with autism spectrum disorders and attributed
these deficiencies to confounding clinicians’ abilities to detect depressive symptoms.
Moreover, individuals with autism often do not seek out emotional gratification from
their environment, and do not see the relevance in expressing their feelings to others
(Stewart, Barnard, Pearson, Hasan, & O’Brien, 2006).
In addition, many individuals with DD lack emotional vocabulary to explain
feelings of depression, which prevents loved ones from detecting symptoms. It is
common for individuals with depression to actively seek out treatments that will decrease
symptoms, and being able to detect specific trends is typically reliant on the individual’s
ability to verbalize their emotions to practitioners. In discussing emotions and personal
experiences, the individual develops effective coping strategies in managing depressive
symptoms. For individuals not capable of discussing emotional barriers, it is difficult to
identify the degree of depression they are experiencing.
The lack of effective non-verbal expression of feelings is another contributory
factor that increases difficulty with detecting symptoms of depression. Carpenter (2007)
indicates that adults with autism do not directly or indirectly communicate through social
and nonverbal cues. In assessment, practitioners hone their skills in reading non-verbal
language when making determinations on a person’s emotional status. Moreover, it is
common for a person with autism to smile even when experiencing sadness. If one is
using a gesture that fails to emulate the expected emotion, the likelihood of observers
being able to identify depression symptoms decrease. Such inconsistencies surrounding
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the nature of communication barriers among individuals with DD will always present
difficulties in accurately detecting symptoms. Because of these challenges, it is essential
that clinicians and researchers continue to work closely with clients, families and
caregivers to increase standard competencies and develop a universal approach despite
the presenting challenges.
A common frustration experienced by loved ones and caretakers of individuals
with DD is the lack of empirically supported literature available in guiding their approach
on detecting symptoms of mental illness (Carpenter, 2007). Providers, caretakers, and
family members need further instruction to improve abilities in observing, understanding,
and reporting on symptoms of depression with individuals with developmental
disabilities. With advancements in this area of research and practice, caretakers will have
increased competencies in knowing what symptoms to look for and how to address
potential depression with each individual.
In working with the DD population, a common challenge consists of preparing
caregivers so they can meet client, family and agency expectations in effective service
delivery. From a clinical perspective, agencies who serve individuals with DD rely on
caregivers to implement client treatment plan procedures, monitor client behavior, and
report findings to agency clinicians. However, many caregivers are hired with limited
experience of their target population and minimal education of depression characteristics
(Luiselli & St. Amand, 2005). Agencies that provide clinical services to individuals with
DD often struggle with training caregivers to effectively carry out these duties of
33
identifying symptoms of psychopathology. Further empirically supported literature is
needed to address shortcomings that exist with training caregivers to detect depression
symptomatology in DD.
There has been some progress with exploring training competencies to improve
caretakers’ ability in managing the needs of individuals with DD. In their 2005 study,
Luiselli and St. Amand (2005) implemented a training program to address the
inexperience and lack of education of direct-caregivers by rapidly increasing their skill
set. They administered a standardized training curriculum to direct-care employees
recently hired at a human services agency serving individuals with DD. The curriculum
consisted of providing this training module to participants who had been employed with
the agency for an average of 31 days. This study was administered to 24 participants
employed in three different settings: A day school for children ages 5-12 (N=6), a
residential school for ages 6-22 (N=11), and adults attending a day rehabilitation center
ages 22-86 (N=7). The participants were given a pre-test, post-test, and a one-month
follow-up to determine skill acquisition through standardized assessment. The results
indicated improvement in every participant from pre-testing to post-testing so the study
clearly demonstrates immediate effectiveness increasing competencies. In a couple
instances, test results were lower in thone-month follow-up than the post-test, which
suggests that increasing the frequency of the test may improve staff’s competencies in the
field (Luiselli & St. Amand, 2005).
34
While this study encourages agencies providing clinical services to the DD
population to consider the utilization of standardized trainings to their staff, it may not be
indicative of job performance. Individuals with DD are not a homogenous group as there
is a wide range in environment, personality characteristics, and cognitive abilities (Dodd,
Dowling, & Hollins, 2005). Given the potential differences of challenging circumstances
each individual presents, direct caregivers will require more extensive training and
empirical data to properly address the array of difficult situations that occur with
behaviors related to psychopathology in the DD population.
Another difficulty encountered in detecting symptoms in people with DD is being
able to distinguish depression from immaturity and developmental factors. In people with
more severe DD it becomes increasingly more difficult for practitioners and support
persons in distinguishing depression from immaturity and developmental factors. Matson,
Perry, and Roy (1997) reported significant difficulties in their study with being able to
distinguish depressive symptoms in persons with severe DD who exhibit aggressive
behaviors, given the prevalence of these individuals that engage in such behaviors. Glick
and Zigler (1995) suggested that developmentally, people with more severe DD tend to
display immature emotions, such as turning on other people rather then on themselves.
Therefore, categorizing a person who is dealing with conflict versus one who is depressed
becomes problematic.
Another area of difficulty for members involved in a treatment team of a person
with DD occurs when depression and anger look similar to each other. In a study by
35
Lowry (1998), it is suggested that when a person feels depressed, they may have a
negative perspective towards events in the environment and might display aggressive or
challenging behavior to avoid participation in these events by seeking negative
reinforcement. Therefore, if future studies elaborate further on this aspect of depression,
practitioners may be able to finally treat individuals with severe DD objectively for
symptoms of depression.
Diagnostic Criteria
Identifying best practices has been problematic when assessing depression in
individuals with DD because specific diagnostic measures have not been discovered.
Researchers struggle in developing a “stand alone” assessment tool for people with DD
that effectively distinguishes their typical behaviors from actual symptoms of depression
(Matson, Gardner, Coe, & Soyner, 1991). Consequently, many researchers administer
depression criterion to people with DD who exhibit symptoms of depression despite
lacking legitimate DD-specific assessment tools. A dilemma exists among practitioners
and researchers who diagnose people with DD with depression using criteria that has
potential validity concerns. This raises a couple questions that need further attention:
First, how do we know if depression criteria are valid when diagnosing someone with
DD? Second, how can we differentiate an individual’s symptoms of depression from
symptoms resulting from their developmental disabilities?
The literature demonstrates that applying current depression criteria to people
with DD indicates some signs of validity while using it on people with moderate, severe
36
and profound levels of DD is more difficult due to decrease usage of verbal
communication in assessments. In the general population, the DSM-IV (APA, 2000) is the
standard criteria used for depression (McBrien, 2003). These consist of cognitive
symptoms that rely on self-report (e.g. recurrent negative thoughts, feelings of
worthlessness, or diminished ability to think/perform) and behavioral symptoms that also
rely on self-observation from client (e.g. insomnia, changes in appetite, or decline in
interest in most activities) (APA, 2000).
In a study by McGuire and Chicoine (1996), they surveyed 40 people with Down
Syndrome who were diagnosed with depressive disorders and explored each symptom of
depression as defined in the DSM-III-R (APA, 1987) and the DSM-IV criterion (APA,
2000). Participants were diagnosed with Mild DD (Mild Mental Retardation), and were
enrolled in an Adult Down Syndrome Center, a clinic that follows almost 300 adults with
Down Syndrome. The participants in the study were followed for 36 months and focused
on sixteen individuals who were diagnosed with major depression and conducted case
studies on 5 participants, specifying their depressive symptoms in greater detail.
Symptoms for the sixteen participants included fatigue, the appearance of sadness (also
observed as a loss of humor and liveliness), loss of concentration, increase irritability,
increase in verbal behaviors, disturbance in sleep, alterations in weight, self-absorption,
inattentiveness to people and surroundings, and a lack of interest or participation in all or
most activities. Decrease in psychomotor retardation, particularly in self-care activities
including dressing and eating were also present (McGuire & Chicoine, 1996). As a result,
37
McGuire and Chicoine’s study demonstrates functional use of DSM criteria of depression
in Mild forms of DD.
The literature demonstrates recent studies with exploration to determining how to
differentiate individual symptoms of depression between typical reactions associated with
their developmental disabilities. In their 1996 study reviewing research on depressive
episodes within the proceeding five years, Cooper and Collacott (1996) reported that
depression manifests in atypical ways in people with DD. As a result, their study
recommends using current standard criteria such as the Kettering Leicester scale which is
similar to the DSM-IV (APA, 2000) depression criteria. In addition, Cooper and Collacott
(1996) found it essential to substitute some of the criteria due to concerns of missing
diagnosing depression because of clients’ inability to self-report thoughts and feelings.
Substitutions included adding maladaptive behaviors (aggression or tantrums), and past
history of mania or depression that responded to pharmacological treatment with
antidepressants. Cognitive symptoms that consisted of self-report of thoughts and
feelings were taken out of the Kettering scale.
Another study conducted by Matson, Rush, Hamilton, Anderson, Bamburg,
Baglio et al. (1999) evaluates the Diagnostic Assessment for the Severely Handicapped –
II (DASH-II) (Matson, 1995) and its ability to differentiate between symptoms of
depression or (associated) behaviors from atypical or (core) behaviors exhibited by
individuals with severe DD. Participants included a depressed group of people with
moderate and severe DD (who also showed symptoms of depression, based on the DSM-
38
IV depression criteria, 1994) and two control groups (n = 19 with Autism Diagnosis , n =
20 with no DSM-IV diagnosis). The depressed group revealed core symptoms such as
difficulties with sleep, eating, and irritability, while associated symptoms of depression
such as aggressive behaviors, stereotypy, non-compliance and unresponsiveness to the
environment were present as well (Matson et al., 1999). Matson et al. (1999) could not
conclusively determine that associated symptoms exhibited in the “depressed group”
were symptomatic of depression because those behaviors frequently occur in this
population anyway. They could not conclude that aggression, non-compliance and other
behaviors related to resistance are specific symptoms of depression in people with more
severe forms of DD (Matson et al., 1999).
Review of Diagnostic Criteria in DD
The Beck Depression Inventory II (BDI-II) (Beck, Steer, & Brown, 1996) is a 21item self-report scale that is designed to measure the severity of depressive symptoms in
adults and adolescents aged 13 years and over from general populations and
psychiatrically diagnosed patients (Antony & Barlow, 2002, p. 267). The BDI-II
demonstrates high internal consistency (alpha = .92 among outpatient participants)
(Antony & Barlow, 2002, p. 267). The convergent validity of the BDI-II is supported by
significant correlations with other indices of depression, including a .93 correlation with
the earlier version, BDI (1967). One-week test-retest reliability is .93. Some of the BDIII’s strengths include consistency with the criteria of the DSM-IV, simplicity in
administering and taking the test, and its large database of empirical results to draw
39
comparisons. Researchers considered this measure to be appropriate for individuals with
DD since it is less complex and shorter than Beck’s original inventory. When
administering this scale to individuals with DD, McCabe et al., (2006) did not make
modifications since they determined the original wording of each item to be simple
enough to use with individuals within the mild-to-moderate cognitive functioning range.
Each item consists of four statements and the participants are required to select the
statement from each item that best represents their current mood over the last two weeks
(McCabe et al., 2006).
Some research supports additional current criterion with minor changes. The
Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning
Disabilities/Mental Retardation (DC-LD), published by the Royal College of
Psychiatrists (RCP) (2001) is said to have potential in standardizing practice and making
a breakthrough in facilitating diagnosis of psychiatric disorders in adults with DD
(McBrien, 2003). Developed in Europe by scholars from the UK and the Republic of
Ireland, this criterion is intended to be used with the major depression criterion (such as
ICD-10 and DSM-IV) for people with mild DD, and it also demonstrates potential use as
a “stand alone” tool for people with moderate to profound DD (McBrien, 2003). The DCLD (Royal College of Psychiatrists [RCP], 2001) criteria is similar to the DSM-IV (APA,
2000) in that it includes symptoms such as changes in weight loss, appetite, psychomotor
agitation or retardation, sleep disturbance, decreased ability to concentrate, and loss of
energy. However, it possesses additional specifying features with greater detail on the
40
following: 1) Loss of confidence or increase in reassurance-seeking behavior or increase
in anxiety or fearfulness, 2) Increased tearfulness, 3) Onset of or increase in somatic
symptoms/physical health concerns (e.g. increased complaints of many aches or pain;
increased preoccupation with physician illness; repeatedly showing different parts of the
body for caretaker to check), and 4) Increase in a specific problem behavior (RCP, 2001).
Another diagnostic criterion developed to assess psychological, emotional and
behavioral problems in individuals with mild to borderline DD is the Emotional Problem
Scales (EPS), originally developed by Prout and Strohmer (1991). The EPS assesses
emotional problems including depression and anxiety, and also covers behavioral
problems such as non-compliance, aggression and sexual maladjustment (Prout &
Strohmer, 1991). The EPS was designed to be used alongside two supplemental scales:
the Behavioral Rating Scales (BRS) and the Self-Report Inventory (SRI). The EPS
analyzes the reasoning of an individual’s external and internal behavior problems with
assistance of these sub scales. External behaviors are labeled as such as verbal, physical
aggression and non-compliance scenarios whereas internal behaviors consist of are
labeled as low self-esteem, depressive, and anxious symptoms (Prout & Strohmer, 1991).
The EPS, used only with the BRS sub-scale is comprised of 135 items scored 0 (almost
never) to 3 (Often) and participants are asked to what extend the behavior manifests itself
over the past 30 days. It is coded into 12 sub-scales: Thought/Behavior Disorder; Verbal
Aggression; Physical Aggression; Sexual Maladjustment; Non-compliance;
41
Hyperactivity; Distractibility; Anxiety; Somatic Complaints/concerns; Withdrawal; Low
Self-esteem; and Depression (Prout & Strohmer, 1991).
Using the BRS instrument (which is a sub-scale of the EPS), Hogue, Mooney,
Morrissey, Steptoe, Johnston, Lindsay, and Taylor (2007) conducted a study in which
direct care staff administered the assessment to 212 male “offenders” involved in forensic
services with mild DD. The purpose of this study was to assess the differences between
Prout & Strohmer’s (1991) externalizing behavior problems (consisting of an individual’s
actions) and internalizing behavior problems (an individual’s perceptions of themselves)
across three levels of forensic care: Highly secure inpatient facility (N=73), Medium-Low
secure inpatient facility (N=86), and Community Forensic Program (N=69) (Hogue et al.
2007). The SRI was not administered given the researcher’s concern with participant
cooperation in self-reporting symptoms. The BRS is deemed to be more effective in this
instance as it takes approximately 20 minutes to complete, is comprehensive in that it
covers twelve sub-scale problem areas, and is reported to have good face validity when
completed by someone other than the participants (direct-care staff members).
When analyzing the results of this study, the researchers identified differences in
both external and internal problem sub-scales with participants in the highly secure unit
(Hogue et al., 2007). This consisted of an increase of physical aggression (external subscale) and substantial differences of internal perceptions such as lower self-esteem, and
symptoms of depression and anxiety were more prevalent (Hogue et al., 2007). There
were a couple reasons for why this occurred. First, given the higher prevalence rate of
42
documented depressive and psychotic disorders across individuals within this group, this
outcome was likely to occur. Secondly, it is possible that the nature of
institutionalization, particularly a heavily secured environment has a negative impact on
the individual’s emotional status, resulting in increased symptomology. Hogue et al.
(2007) felt their study was useful in identifying emotions and behaviors associated with
depression, but found it difficult to distinguish one from the other. Furthermore, there do
not seem to be any prior publications, or empirical evidence of the EPS effectively
identifying these differences in clinical settings (Hogue et al., 2007). Therefore,
additional studies with this instrument may properly determine its overall effectiveness as
an assessment tool in people with depression and DD.
Determining the prevalence of depression in people with DD in institutionalized
settings such as the previously mentioned study draws a couple areas of consideration.
Hogue et al.’s 2007 study demonstrates higher rates of depression exists in people with
DD living in institutions as shown through the EPS rating scale. The higher secured units
revealed increased incidents of physical aggression, which are indicative of depressive
symptoms in people with DD (Lowry, 1998). In comparison to the general population,
individuals with DD are more receptive to staff interaction through human contact, thus
depression may manifest itself from being isolated and neglected from other people. As a
result, treatment approaches involving multidisciplinary teams, or group therapies may be
more effective than institutional treatments that isolate the person. Incorporating
43
increased attention, support, and validation from staff into treatment planning with people
with DD may be a useful method to decreasing depressive symptoms.
Limited Significance in Research Sample Sizes
Despite some evidence of current measures that support effective treatments in
individuals with DD, it is limited to case studies, and only a small number of controlled
studies have been conducted (Anderson & Kazantzis, 2008). In a review of recent
cognitive therapy studies that correlate depression and aggression in people with DD,
Sturmey (2004) reported that the research fails to replicate between other studies,
implying limited “experimental power” due to limitations largely attributed to small
sample sizes across studies. In reviewing the research developments on the use of
standardized versus modifying diagnostic criterion for depression with adults with DD,
McBrien (2003) could not determine a consensus on best practices due to many studies
having small sample sizes. As a result, McBrien (2003) was not convinced of the studies’
practical application to larger clinical settings, or societal practices of assessing
depression in people with DD.
Several studies where success or effectiveness was indicated, consists of few
participants: Clarke and Gomez (1999) had an N=11 when modifying ICD-10 criteria for
depression using behavioral equivalents; McGuire and Chicoine (1996) sampled an N=40
to evaluate depressive disorders in people with Down Syndrome; Lindsay (1999) had an
N=5 in a study pertaining to the effectiveness of Cognitive therapy with people with mild
DD; McCabe et al. (2006) conducted a comprehensive study on cognitive group therapy
44
with a sample of N= 34, which also includes the control group; and Matson et al. (1999)
explored the DASH-II (Matson, 1995) and its ability to differentiate symptoms of
depression from exhibited aggression by people with Autism and severe DD (N=19).
Interpreting results can pose dilemmas among researchers when reviewing small studies.
For example, applying diagnostic criterion and rating scales to small studies makes it less
complex in finding preferred results and determining conclusive evidence. If studies
continue to consist of small numbers of participants regarding depression with people
with DD, there will continue to be a lack of empirically supported treatments.
There have been larger participant studies indicating positive results such as
Hogue et al. (2007), who sampled an N=212 in determining differences in behavior
problems in people with DD across three security levels at an inpatient facility.
Participants are easily accessible at inpatient facilities, although the homogeneity of
participants presents additional barriers in determining conclusive evidence across people
with DD as a whole. Deb, Thomas, and Bright (2008) evaluates a variety of larger studies
to determine the prevalence mental illness in individuals with DD by accessing city and
state databases and large agencies providing DD services. This may be a useful method
for other researchers if they can find the appropriate method of access.
Considerations with Modifying Existing Scales
In addition, researchers modified existing scales to compensate for limited
cognitive functioning with potential participants, which decreases the overall functioning
of the test itself. In their 2007 study, Esbensen and Benson evaluated Beck’s cognitive
45
theory of depression in adults with DD. While some aspects of Beck’s model effectively
targeted depressive symptoms, they encountered inconsistencies when testing participants
since an empirically supported questionnaire that is specific to this population was
lacking (Esbensen & Benson, 2007). Moreover, they modified several scales that are
typically used to test the cognitive triad of children, which resulted in an inconclusive
study.
McCabe et al. (2006) modified Kendall and Hollon’s (1987) scale; the Automatic
Thoughts Questionnaire-Revised (ATQ-R) when using it as a dependent variable
alongside the BDI-II (Beck, 1996) to evaluate cognitive therapy with depression and
people with DD. The ATQ-R is a 40-item scale designed to measure the frequency of
automatic statements about the self (as cited in McCabe et al., 2006). It was originally a
5-point Likert scale, but was modified and reduced to a 3-point Likert scale to simply it
for participants in this study. Due to the ATQ’s excellent internal consistency and
concurrent validity with measures of depression, the modification did not negatively
impact the study.
Clarke and Gomez (1999) conducted a study that explored the addition of
depressive behavioral equivalents (see also Marston et al., 1997) using a hospital sample
of 11 participants. Clarke and Gomez (1999) identified participants who had been treated
with antidepressants for depression over a 12-month period and modified standard
criteria (ICD-10) by adding items of challenging behavior from Marston et al.’s (1997)
behavioral equivalents. After analyzing the changes over time throughout the
46
antidepressant treatment, Clark and Gomez (1999) concluded that it is advantageous to
retain the standard diagnostic criteria with only modifying it by adding behavioral
equivalents.
Currently, there is not an empirically supported guideline for best practices that is
readily available for professionals in providing treatment. While some studies identify
effective treatments such as cognitive behavioral therapy (CBT) (Sturmey, 2004), in
applied behavioral analysis (ABA) (Rush & Frances, 2000), and through the use of
pharmacological interventions (McCabe et al., 2006; Reiss & Aman, 1998; Sturmey,
2004), further evaluation is needed to determine conclusive evidence on identifying
factors of depression with this population (Esbensen & Benson, 2007).
In a review study by McBrien (2003), he identified further research developments
regarding assessment and diagnosis of depression in adults with DD during the mid1990s. McBrien’s (2003) findings determined several areas of growth are needed to
continue establishing prevalence and effective treatments for depression. Current
diagnostic criterion is inadequate because it is geared towards depression while
symptoms manifest differently in people with DD (especially amongst more severe DD).
In addition, researchers are divided on the best practices as some authors advocate for
adherence to standard criteria, others suggest adding criteria to standard scales, and others
feel that criteria with substitution of specific behaviors related to the DD population is
most effective. Moreover, McBrien’s (2003) study suggests that more progress on a valid
conceptual framework for depression and DD is needed, as this continues to be a
47
weakness when reviewing the overall developments. Despite these noted shortcomings in
the collective research, McBrien (2003) indicates a consensus for the emergence of
diagnostic criteria among people mild DD increasing clinician’s competencies in
examining symptoms of depression. These criteria include the DSM-IV (APA, 2000), the
DC-LD (RCP, 2001), and the DASH-II.
Limited Validity Due to Poor Self-Report
Research on depression treatments for individuals with DD as a whole have had
limited validity and a major reason pertains to difficulties in collecting precise data in
interviews with participants. Typically, when determining a diagnosis of a depressiveillness, clinicians rely on self-report by the patient. This includes patient feedback
pertaining to specific changes in behavior patterns, thought processes, coping
mechanisms, or other symptoms (McBrien, 2003). Many of these features are not
possible with people who do not have these communication skills, making it much more
difficult to diagnose. These problems encountered in assessment and diagnosing have led
to some debate regarding prevalence and treatment choices (McBrien, 2003). Moreover,
when relying on verbal reports from participants, researchers haven’t always been able to
complete their studies, and this serves as a potential barrier in determining conclusive
evidence on best treatment practices. In result, reliability and validity concerns arise
when relying on the information provided by caretakers on the participants’ behalf.
In their case study with individuals with DD and mental illness, Anderson and
Kazantzis (2008) encountered marginal results determining depression symptoms in their
48
interviews because of inabilities to obtain complete information from participants. They
attributed their inconclusive results to be participants’ tendencies in giving a “response
set.” “A response set” is when an individual repeatedly provides the same answer to selfreflecting questions in a manner that looks pre-planned. This is a significant barrier when
utilizing the self-report technique with individuals with DD because it creates validity
problems for researchers who are in the midst of searching for empirical evidence. Many
individuals with DD have been ridiculed through their lifetime and are aware of societal
stigmas that portray them as emotionally unstable or psychotic (Anderson & Kazantzis,
2008). Therefore, a person may give a “response set” due to being wary of reporting
symptoms for which they have previously received criticism.
Despite the inherent difficulties in collecting information from people with
significant communication difficulties, many professionals in residential and community
settings have turned to observational studies and recordings of activities (Hassiotis,
2002). This has aided in measuring quality of life and has compensated for difficulties in
direct reporting by the individuals. In addition to identifying needs by observation, the
DD community’s movement towards person-centered planning, client-advocacy, and
increased client involvement in their service-delivery plans have contributed in getting to
know clients individually (Hassiotis, 2002). This contributes to direct-care staff and
treatment teams being better suited in helping clients identify appropriate and gainful
objectives.
49
In their study to determine the appropriateness of Beck’s (1967) cognitive theory
to be used with adults with DD, Esbensen and Benson (2007) found that collecting data
by self-report is possible and should not be discarded from further use with participants
who can communicate verbally with others. Their study consisted of two different selfreport scales that were administered to 48 adults with mild to moderate DD: The SelfReport Depression Questionnaire (SRDQ) and the Piers-Harris Children’s Self-Concept
Scale. The SRDQ was designed by Reynolds and Baker (1988) and it is a 32-item scale
that measures depressive symptomatology among people with DD. Item responses are
‘almost never,’ ‘sometimes’ and most of the time,’ and it also asks the participant to
choose between three faces that express how they felt during the preceding two weeks
(Reynolds & Baker, 1988). Esbensen and Benson (2007) indicate high internal
consistency, moderate test-retest reliability, and validity in this questionnaire. Therefore,
the SRDQ is a promising self-report instrument when determining effective treatment
measures for depression in people with DD.
The Piers-Harris Children’s Self-Concept Scale is an 80-item self-report
instrument that was initially designed to measure self-concept among general population
children, ages eight and older (Piers & Harris, 1969). For purposes of their study,
Esbensen & Benson (2007) eliminated several questions, and altered some of the wording
for the questions to be more appropriate for adults, resulting in 72-items that were
administered. The internal consistency and validity of this adapted scale were good,
which demonstrated that utilizing self-report techniques can be effective amongst adults
50
with DD in collecting data (Esbensen & Benson, 2007). However, using a scale designed
for children may result in further embarrassment for these adult participants, and
ultimately hurt their feelings during the testing experience.
Depression Within the General Population
Depression affects more than 19 million American adults each year (NIMH,
1999). According to the DSM-IV, TR (APA, 2000), depression is classified as a mood
disorder in which there are several different types, depending on criteria. Mood disorders
include major depressive disorder, dysthymic disorder, and bipolar disorder (APA, 2000).
Approximately 20.9 million American adults, or about 9.5% of the U.S. population age
18 and older in a given year, have a mood disorder (NIMH, 1999). The median age of
onset for mood disorders is 30 years. Depressive disorders often co-occur with anxiety
disorders and substance abuse.
Major Depressive Disorder is the leading cause of disability in the U.S. for ages
15-44. Major depressive disorder affects approximately 14.8 million American adults, or
about 6.7% of the U.S. population age 18 and older in a given year (NIMH, 1999). While
major depressive disorder can develop at any age, the median age at onset is 32. Major
depressive disorder is more prevalent in women than in men. Bipolar disorder affects
approximately 5.7 million American adults, or about 2.6% of the U.S. population age 18
and older in a given year. The median age of onset for bipolar disorders is 25 years. More
than 90% of people who kill themselves have a diagnosable mental disorder, most
commonly a depressive disorder or a substance abuse disorder (NIMH, 1999). Dysthymic
51
disorder affects approximately 1.5% of the U.S. population aged 18 and older in a given
year. This figure translates to about 3.3 million American adults. The median age of onset
of dysthymic disorder is 31 (NIMH, 1999).
Cognitive Therapy has emerged as a major treatment modality of depression
within the last 30 years, and Beck’s (1967) CBT approach to depression has received the
greatest amount of empirical study, validation, and clinical application (Young et al. as
cited in Barlow, 2001). In addition, pharmacological interventions for depression
continue to be the most frequently prescribed form of treatment (Anotonuccio, Danton, &
DeNelsky, as cited in Barlow, 2001, p. 268). In several different studies, researchers
found improvement rates of depression with individuals receiving outpatient treatment
using cognitive therapy, antidepressant medications, or a combination to be almost
always greater than 50% by client termination (Barlow, 2001). There has also been
extensive research examining relapse rates of episodes of depression in the general
population. Barlow (2001) highlights several studies that analyze cognitive therapy and
pharmacological treatment and its impact on preventing relapse from further depressive
episodes. Researchers indicated significant findings that support cognitive therapy by
itself is the most effective in preventing relapse. Cognitive therapy eliminates symptoms
of depression by addressing the onset, which is often caused by role of life events (Brown
as cited in Barlow, 2001). Cognitive Therapy is also effective in reducing residual
symptoms from appearing, which is a known disadvantage of long-term treatment using
pharmacological intervention (Fava, Rafanelli, Grandi, Conti, &Belluardo as cited in
52
Barlow, 2001). Patients using antidepressants continue to manifest symptoms of
depression, and researchers conclude these residual symptoms increase the risk of relapse
(Evans, Hollon, DeRubeis, Piaseki, Grove, Garvey, & Tuason as cited in Barlow, 2001).
Pharmacological Treatments
Pharmacological interventions have become a very important component for
social workers to address in the treatment process with general population clients. Due to
increased service delivery in public mental health clinics, the national movement of
deinstitutionalization with people with mental illnesses into community programs, and
the evolution of modern psychotropic medications, social work practice requires adequate
competency in depression treatments with medication (Bentley & Walsh, 2006). Social
workers must be cognizant in recognizing when clients need to be referred for a
medication evaluation. Observing the presence of sustained physiological symptoms in
clients is a principal reason indicative of starting pharmacological treatments (Preston &
Johnson, 2009). Physiological symptoms for clinicians to monitor include; Sleep
disturbance, appetite disturbance, fatigue, decreased sex drive, restlessness, agitation, or
psychomotor retardation, diurnal variations in mood, impaired concentration, and
pronounced anhedonia (Preston & Johnson, 2009). If physiological symptoms are not
present, Preston and Johnson (2009) recommend psychotherapy to be the most
appropriate treatment approach. From a biological perspective, symptoms in clinical
depression are caused by a dysregulation of neurotransmitters such as norepinephrine,
53
dopamine, and/or serotonin. Treating depression with antidepressants restores
dysregulation and reduces depressive symptoms (Preston & Johnson, 2009).
There are three general types of antidepressant medications; Tricyclics,
Monoamine Oxidase (MAO) Inhibitors, and Selective Serotonin Reuptake Inhibitors
(SSRI). MAO Inhibitors have inhibitory effects on serotonin, norepinephrine, and
dopamine and are considered to the most effective antidepressants (Bentley and Walsh,
2006). Common MAO’s include isocarboxazid, phenelzine, selegiline, and
tranylcypromine. Given its effectiveness, MAO is not the most common antidepressant
because it can cause a fatal hypertensive condition and requires a very strict diet plan.
Tricyclics work by blocking the reuptake of norepinephrine and serotonin, and to a lesser
extent, dopamine (Bentley & Walsh, 2006). While it has shown to be effective in
decreasing symptoms, it has adverse side effects on the central nervous system. SSRIs
have become widely prescribed because it their effectiveness and reported a lower
prevalence of ongoing side effects (Preston & Johnson, 2009). However, side effects can
be quite severe within the first two weeks, as many experience increase in anxiety,
restlessness, and/or insomnia. Therefore, these side effects result in discontinuation by
patients (Preston & Johnson, 2009).
Interpersonal Psychotherapy
Interpersonal psychotherapy (IPT) is considered to be brief therapy, and has
become widely accepted as an effective treatment for depression within the general
population (Weissman, Markowitz, & Klerman as cited in Barlow, 2001). It is considered
54
as an acute treatment for depressive symptom removal and prevention, as well as helping
correct secondary consequences relating to depression (Weissman et al. as cited in
Barlow, 2001). In addition, IPT is based on a medical model that classifies depression as
an illness. The American Psychiatric Association (1993) recommends IPT, cognitive
therapy, or behavior therapy for treating mild to moderate depression. IPT can also be
effectively used in combination with medication (Gillies as cited in Barlow, 2001). In
addition, IPT is flexible and has been used to treat depression in medically ill individuals,
adolescents, and the elderly (Gillies as cited in Barlow, 2001).
The IPT therapist takes an active, optimistic role, and also assumes an expert role
with regards to applying psychoeducation of depression to clients and family members.
IPT tends to be a manual-based treatment so the therapist adheres to specified treatment
strategies, rather than a more eclectic approach (Gillies as cited in Barlow, 2001). This
treatment modality is straight forward easy to follow, making it easier to learn than other
approaches. IPT operates from a relationship perspective and acknowledges bio-psychosocial aspects that contribute to the patient’s difficulties. IPT works by helping the client
identify and change maladaptive interpersonal interactions. The IPT therapist
incorporates the assessment of depressive symptoms, interpersonal functioning, and
general psychiatric symptomatology (Gillies as cited in Barlow, 2001). Treatment
typically consists of 12 to 16, 50-minute individual sessions.
In the beginning phase of treatment, a central interpersonal issue is identified and
is used as a framework for the duration of therapy. In the beginning phase, the therapist
55
strives to establish a working relationship with client, review depressive symptoms
experienced by client, and identify the important people and relationships in the client’s
life (Gillies as cited in Barlow, 2001). Middle sessions consist of applying specific IPT
strategies to the interpersonal framework and it where the bulk of therapy takes place. In
the middle treatment phase, the therapist works with the client on examining roles of their
relationships with the people close to them (also known as role disputes), any transitions
involving recent or significant changing in roles are addressed, and improving the quality
of client’s interpersonal relationships are addressed. In the final treatment phase, the
major themes discussed in earlier sessions are integrated, and strategies for maintenance
and prevention of future depression symptomatology are addressed (Gillies as cited in
Barlow, 2001).
Although IPT is evidenced to be a practical and effective treatment approach for
depression in the general population, there are not current studies revealing its
applications on individuals with DD. Given IPT’s emphasis on the client analyzing
interpersonal roles in their life, it may be limited in its empirical effectiveness with a
wide range of the DD population.
Limitation Factors with Researching Depression Treatments in DD
Research on depression treatments for individuals with DD as a whole have had
limited validity. One reason pertains to difficulties in collecting precise data in interviews
with participants. Researchers have encountered limited ability to obtain reports verbally,
and could continue to serve as a potential barrier in determining conclusive evidence on
56
best treatment practices. In their case study with individuals with DD and mental illness,
Anderson and Kazantzis (2008) encountered marginal results on depression symptoms in
their interviews. They considered this lack of data on measures of change occurred
because the participant gave a response set. That is, when an individual tends to
repeatedly give the same answer to self-reflecting questions in a manner that looks preplanned. This is a well-documented problem of self-reporting with individuals with DD
for researchers and it complicates empirical evidence in being determined.
Another major contributing factor consists of researchers who examine issues
surrounding Attention Deficit/Hyperactivity Disorder (ADHD), depression, anxiety and
other mental illnesses within general population, but typically exclude individuals with
DD due to complications surrounding testing (Dykens, 2007). Consequently, clinicians,
clients and families know less about the best practices for causes, assessment
competencies, diagnosis, and treatments. For example, when conducting a search of
published peer-reviewed articles on depression in women from 2005 to 2007, Dykens
(2007) found 703 articles. Only four of them were published on depression in with
intellectual or developmental disabilities. Therefore, the lack of studies being conducted
on depression with DD in comparison with other depression studies clearly indicates
limited attention on finding empirically supported treatments for future practice.
Summary
The research indicates the need for more specific outcomes when determining the
best practices among individuals with DD and depression. As reviewed in the previous
57
sections, there are various studies that describe the utilization of different treatment
modalities in this particular population. Based on the literature review, current treatments
are limited in detecting and differentiating depressive symptoms in individuals with DD.
Also, while there has been progress in developing effective diagnostic criteria for people
with both DD and depression with the emergence of the DM-ID manual (Fletcher et al.,
2009) and the DC-LC (RCP, 2001), criteria still lack clarity in its long-term efficacy.
Lastly, popular depression interventions with the general population such as cognitive
therapy, cognitive behavioral therapy, interpersonal therapy, and psycho-pharmacological
treatments do not necessarily translate as effectively when treating depression in persons
with DD due to co-occurring conditions and cognitive deficits. Therefore, the various
treatment modalities lack conclusive evidence as optimum sources for improving
depression amongst individuals with DD.
58
Chapter 3
METHODS
Introduction
This chapter describes the methods used in acquiring further knowledge of current
treatment practices being utilized in the field of developmental disabilities (DD) and
depression. It includes a Design section that explains why the researcher used this
particular research design. The Sample Procedures explains steps taken in collecting data
and the reasoning for selecting specific respondents. The Instruments section describes
the themes within the survey and intention of each question. The Data Analysis section
describes how data was analyzed. The Human Rights Protection section explains the
steps taken by the researcher to ensure that respondent’s rights and confidentiality were
preserved. Lastly, this chapter includes a Limitations section that illustrates the potential
shortcomings in the research.
Study Design
This was an exploratory study that examined the best practices when treating
depression in individuals with developmental disabilities. The researcher designed a
fifteen question online survey to gain different perspectives on depression treatments
being used by practitioners who work directly with the DD population. As indicated in
the literature, there is a lack of empirical support for effective treatment modalities of
depression within the DD population. The researcher explores the current treatments
being utilized, how these treatments are perceived by professionals in the field, and how
59
effective they are in addressing depression with individuals with DD in hopes of gaining
further understanding of how advancements towards empirical practices can be attained.
Sample Procedures
Respondents were recruited from Alta California Regional Center (a major
provider of services to the DD population), local vendors that provide clinical services to
clients of Alta California Regional Center, or a California State Prison that has a large
population of individuals with DD. Respondents were identified by the researcher
individually and qualified based on their relevant work experience in working with
individuals with DD, and having at least a master’s level education or higher. The
researcher assumed the respondent had a working knowledge of depression’s clinical
definition because they were asked to differentiate between Axis I diagnoses as defined
in DSM. Therefore, requiring respondents with at least a master’s level education
increased the probability of having a working knowledge of the different mental health
diagnoses.
Participation was entirely voluntary and posed no risk for the respondent to
complete the survey (see Appendix A). Each respondent was individually e-mailed a link
containing a URL address re-directing them to another website to access the survey. A
cover letter was included in the e-mail body explaining the purpose of the study (see
Appendix B). Informed consent appeared on the survey’s first page, which described the
procedures, benefits, risks, and also provided a detailed list of respondent’s rights.
60
Respondents were also informed that their consent was implied with completion of the
survey.
All of the data collected was analyzed in the aggregate. Responses and e-mail
addresses were not made accessible to anyone, and the Survey Monkey website ensured
encryption to protect all responses from outside viewers.
Data Collection
The survey consisted of 15 questions with some being used in a Likert scale. The
questions were comprised of the following features: The first set of questions highlighted
the respondent’s work related demographics which includes their job title, highest
education level and relevant work experience with the DD population. The second set of
questions focused on respondents’ specific work experience with cognitive functioning
levels, mental illness, and depression with individuals with DD. The next set of questions
discussed common symptoms of depression observed by respondents, and how they feel
it affects the daily lives of their clients. In addition, the respondent was asked to
described what treatments they use, how effective are depression treatments, and what
changes in symptoms they recognize if individual responds to the treatments. In the last
group of questions, the respondent was asked to comment on available resources
regarding adequate treatment implementation, and provide recommendations for
improving depression treatments.
61
Data Analysis
The researcher downloaded the responses from Survey Monkey, and transferred
the data on SPSS to be analyzed for patterns, themes, descriptors, associations, and
correlations. The researcher utilized both tables and figures when illustrating the
respondent’s responses. The researcher also used cross tabulation analysis when
describing two distinct themes that arise in a given question. Qualitative Analysis was
utilized in order to effectively record respondent’s feedback in questions with “Other” or
“Comments” options.
Human Subjects Protection
The protocol for the Protection of Human Subjects was submitted by the
researcher and approved by the Division of Social Work as posing no risk to prospective
respondents. To keep risks at a minimum, the researcher used Survey Monkey, an online
survey company that ensures respondent’s protection by using encryption with secure
socket layer technology (SSL) which is optimal in maintaining confidentiality of
responses from outside sources. To preserve anonymity of human subjects, the researcher
contacted each respondent individually through e-mail without revealing their email
address to anyone. Before contacting qualified respondents, the researcher obtained
written permission from employer to send the survey URL link to respondents from a
work related e-mail address. Lastly, all of the findings were recorded and kept in Survey
Monkey’s database, which is password protected and accessible by the researcher only.
62
Limitations
For the most part, all prospective respondents work in a concentrated
geographical location, consisting of only Sacramento, Placer, and Solano counties. Thus
responses regarding abundance of resources may not reflect service needs outside this
region. As a result, this study is limited in obtaining different geographical perspectives
pertaining to depression treatment modalities in people with DD. Another limitation is
that surveys were distributed online which prevented the researcher from monitoring
respondents as they completed them. As a result, there is not a definitive approach
ensuring that each respondent selected was the actual professional completing the survey.
Lastly, the data is based solely on the respondent’s perceptions. Therefore the findings
are predicated on their opinions despite any of their existing biases or personal agendas
pertaining to the DD population.
63
Chapter 4
FINDINGS
Introduction
This chapter presents the findings from analysis of the data collected from the
completed surveys. Given the lack of empirical evidence in the literature regarding
effective treatment practices for depression among people with DD, the researcher
targeted educated and experienced professionals for an enhanced perspective. Findings
are presented, using a quantitative approach, in tables, figures, and cross tabulations.
Qualitative analysis was also used to help analyze survey responses containing extensive
feedback in the comments sections.
Response Rate
Overall, the researcher received 60 completed online surveys out of 115 who were
asked to participate – a rate of 52%. An e-mail request was sent to each respondent
individually. Contents of the email included a cover page explaining the research
purposes, informed consent to participate, and a secured internet link that contained the
questionnaire. Approximately two weeks after receiving the initial e-mail, each
respondent was sent a reminder, encouraging their participation. All of the 60 survey
responses were complete and incorporated in the data collection process for analysis.
64
Survey Results
Frequency Distribution of Respondents’ Occupational Categories
Ten respondents (19.2%) identified with the job title, Case manager; 14 (26.9%)
with Clinician / therapist; 12 (23.1%) with Supervisor; One (1.9%) with Medical provider
(nurse, physician); and 15 (28.8%) with “Other”. The respondents entering “Other” used
specific consideration to their job titles such as: Regional Director, Social Worker,
Psychologist, Intake Counselor, State Institution Liaison, and Behaviorist. These
responses indicate a wide range of professional disciplines, and it exhibits an eclectic
balance of perspectives within this sample of participants. See Table 1.
Table 1
Frequency Distribution of Respondents’ Occupational Categories
Frequency
Percent
Case manager
10
16.4
Clinician
21
34.4
Supervisor
12
19.7
Medical provider
2
3.3
Other
15
24.6
Total
60
100.0
65
Professional Nature of Client Involvement of the Respondents
Respondents were asked to describe the nature of their job duties, and the results
are as follows: 23 (46%) identified with Direct – counseling /case management job
duties; zero (0%) with Direct – medical treatment; 15 (30%) with Indirect – supervisory
role; and 12 (24%) with “Other.” Responses to the “Other” category when indicating
their job description included Consultant, Combination of direct and indirect
counseling/case management, psychological evaluations, federal program chart reviews,
recreational therapy, training case management staff, and behavioral and skill
development training. The majority of these responses appear to fit into the “Directcounseling/case management” category.
The researcher identified a significant relationship between respondents’ job titles
and their specific professional roles pertaining to the types of interactions with clients.
According to the statistics in Table 2 there is a positive correlation between respondents
identifying as case manager, or clinician, and having direct interactions with clients from
the target population. Eighty-one percent of clinicians and 70% of case managers
indicated direct interactions with clients. This demonstrates that those providing clinical
and case management services are doing so in a direct manner with clients with
developmental disabilities. Another salient feature that exists within supervisors, is that
92% specified an indirect role with their clients. This finding is important because
supervisors often play an active role in program development and advocating for clients’
needs. For example, when generating new service implementation, supervisors may lack
66
first-hand knowledge of how clients are managing depression within their home
environment (see Table 2).
Table 2
Cross-tabulation Between Respondents’ Job Titles and the Type of Regular Interactions
with Clients
case
medical
manager clinician supervisor provider other
Respondents’ directjob
counseling-
description
case
with their
management
clients
indirect
supervisory
7
17
0
1
70.0%
81.0%
.0%
0
1
11
.0%
4.8%
91.7%
3
2
0
0
30.0%
9.5%
.0%
.0%
10
21
12
2
100.0%
100.0%
100.0%
6
Total
31
50.0% 40.0% 50.8%
1
2
15
50.0% 13.3% 24.6%
role
Other
Total
7
12
46.7% 19.7%
15
61
100.0% 100.0% 100.0%
67
Level of Education of the Respondents
Thirty two respondents (61.5%) indicated having a Master’s Degree (MSW,
MFT, MS, MA); one respondent (1.9%) a Law Degree; 12 (23.1%) reported having a
Doctoral Degree; zero with a Medical Degree (O%); and seven (13.5%) reported Other.
Of the seven who entered “Other,” six respondents reported having varying degrees of
Masters level or higher, and one respondent specified that they were in the process of
completing their MS degree (see Figure 1).
Figure 1. Respondents’ highest level of education.
68
Work Experience of the Respondents with Developmental Disabilities
Eleven respondents (21.2%) indicated having less than five years of work-related
experience with individuals with Developmental Disabilities (DD); 15 (28.8%) with 5-10
years experience; nine (17.3%) with 10-20 years; and 17 (32.7%) with over 20 years of
experience. This question indicates that respondents have a lot of experience working
with DD clients, which generates significant plausibility in considering their feedback as
contributory (see Figure 2).
Figure 2. Level of experience working with people with developmental disabilities.
69
Prevalence of Cognitive Functioning Levels within Client Population
Respondents were asked to indicate the level of cognitive functioning in the DD
population with which they most commonly work. Forty respondents (76.9%) reported
typically working with clients in the mild to moderate range; six (11.5%) with clients in
the moderate to severe range; zero (0%) within the severe to profound range; and six
(11.5%) indicated “Other.” Eight respondents entered alternative responses in
“comments” which specified respondents having experience working with “all of the
above,” and they also mentioned having worked with varying degrees of functioning
abilities during different periods of their careers. These additional comments suggest a
wide range of experience and knowledge among respondents of the varying functioning
levels in individuals with DD.
According to the respondents, most of their clients experiencing depression
appear to be functioning on a mild to moderate cognitive level. This notion supports
current literature which marginally demonstrates functional use when applying
depression criteria and treatment modalities utilized in general population with mild
forms of DD (McBrien, 2003; McGuire & Chicoine, 1996). Similar to other researchers’
perceptions regarding depression in individuals with DD, this data posits that
professionals in the field have a better understanding of how depression manifests in mild
to moderate DD than more severe to profound functioning (see Figure 3).
70
Figure 3. Respondents’ determination of the level of cognitive functioning of their
clients.
Prevalence of Axis I & II disorders exhibited by Respondent’s Target Population
Respondents were asked to specify the most common Axis I and Axis II disorders
(DSM IV-TR, 2000) exhibited by their clients with DD. Mood Disorders, which includes
depression was reported as the most common, receiving 42 responses (80.8% of all
71
respondents); 36 (69.2%) for Anxiety Disorders; 34 (65.4% of all respondents) for
Schizophrenia Spectrum Disorders; 28 (53.8%) for substance abuse/dependence; three
(5.8% of all respondents) for eating disorders; 22 (42.3%) for personality disorders, two
(3.8%) specified Other; and zero (0%) indicated that they never encountered clients with
DD with a mental health diagnosis. Based on the high prevalence rates of several mental
health categories reported by the respondents, the data indicates very frequent
interactions with clients who have mental health needs. Thus, in order for practitioners to
provide appropriate services and supports for their clients, it is apparent that a stronger
emphasis on mental health interventions should be increasingly accessible (see Table 3).
Table 3
Frequency Distribution of DSM-IV Axis I and II Mental Illnesses Observed by
Respondents of Their Clients with DD (Multiple Responses)
Multiple Responses
N
Percent
Percent of Cases
Axis I & II
Mood Disorder
47
25.1%
79.7%
diagnoses
Anxiety Disorder
38
20.3%
64.4%
Schizophrenia
40
21.4%
67.8%
Substance Abuse
32
17.1%
54.2%
Eating Disorders
3
1.6%
5.1%
Personality Disorders
27
14.4%
45.8%
187
100.0%
316.9%
Total
72
Most Common Depression Symptoms Observed by Respondents
Using the symptoms criteria in the DSM-IV-TR (APA, 2000), respondents were
asked to indicate the common symptoms of depression observed in their clients with DD.
Results were as follows: 38 (73.1% of all respondents) noted depressed mood, feelings of
sadness or emptiness on a daily basis; 31 (59.6%) with markedly diminished interest or
pleasure in most activities; 11 (21.2%) noted significant changes in weight, or changes in
appetite; 25 (48.1% of all respondents) indicated symptoms of insomnia or hypersomnia;
14 (26.9%) with psychomotor agitation; 22 (42.3%) with fatigue or loss of energy;
31(59.6%) noted observing client symptoms of feelings of worthlessness, or excessive or
inappropriate guilt; 16 (30.8%) with diminished ability to think or concentrate; 24 (46.2%
of all respondents) with recurrent thoughts of death or suicidal ideations; five respondents
(9.6%) indicated Other; and zero (0%) with Not Applicable. Additional comments by
respondents included problematic social behaviors, isolation aggression, uncontrolled
crying spells, and exacerbated feelings of inferiority.
According to these research findings, a significant percentage of respondents
report observing depressive symptoms such as depressed mood, remarkably decreased
pleasure (anhedonia), change in sleep patterns, and feelings of worthlessness within their
DD clients. These symptoms are also predominantly identified with individuals in the
general population (Preston & Johnson, 2009). These results suggest that since depressive
symptoms among individuals with mild DD are similar to those experienced by the
73
general population, it is likely that treatment implementation may not have to
significantly deviate from current empirically supported practices (see Table 4).
Table 4
Frequency Distribution of Most Commonly Observed Symptoms Among the Respondents’
Clients
Responses
N
Percent
Percent
of Cases
Symptoms of
Depressed Mood
45
19.3%
76.3%
depression
Remarkably Decreased Pleasure
31
13.3%
52.5%
Significant weight loss or gain,
11
4.7%
18.6%
Insomnia or hypersomnia
28
12.0%
47.5%
Psychomotor agitation or
16
6.9%
27.1%
Fatigue or loss of energy
22
9.4%
37.3%
Feelings of worthlessness, or
33
14.2%
55.9%
19
8.2%
32.2%
decrease or increase in appetite
retardation
excessive or inappropriate guilt
Diminished ability to think or
concentrate
74
Table 4 continued
Responses
N
Symptoms of
Recurrent thoughts of death,
depression
suicidal behavior or statements
Total
Percent
Percent
of Cases
28
12.0%
47.5%
233
100.0%
394.9%
Depression Treatments with DD Clients by Respondents
Respondents were allowed to choose more than one response in the questionnaire.
Twenty (39.2% of all respondents) report that Cognitive Behavioral Therapy (CBT) is
primarily used to treat depression with their DD clients; 12 (23.5%) for Applied
Behavioral Analysis (ABA); twenty-seven 52.9% of all respondents) stated they refer to
medical professional for pharmacological interventions; four (7.8%) specified Other; and
thirteen (26.5%) indicated none.
Several respondents entered additional comments, which consisted of the following:
1) “We contract primarily for behavioral intervention services.”
2) “Psychotherapy.”
3) “Recreational Therapy.”
4) We assist with coping skills and keeping the consumer active with healthy leisure
skill building and productive with a paid job or volunteer site. We work with the
client to instill healthy self image and increased self esteem through the value of
75
accomplishing personal goals. We follow and fully support the consumer's
medication and therapeutic plans as well. Our mission is to support the consumer
in an integrated setting and move them toward the goal of being fully included in
work, educational and leisure activities.
5) When in planning team, I have often tried a variety of methods including
pharmacological intervention and attempting to change the situation the person is
in so that they have activities to be more excited about being involved in.
6) “Medication.”
7) Outside of pharmaceutical interventions there is very little to offer DD, Deaf
clients. Medi-Cal has only one registered MFT who is fluent in American Sign
Language.
8) Our agency is restricted from providing direct treatment services and must refer
out for all direct treatment, but mental health professionals often are unable or
poorly equipped to treat mental illness in people with developmental disabilities.
We may contract with ABA professionals, counselors, or psychiatrists only if
denied services from generic resources (County Mental Health).
9) “Brief Interventions-Emotional Support, Coping Mechanisms.”
10) Most consumers on my caseload with a diagnosis of depression are treated with
medication only.
Based on the results, psychopharmacology is the predominant treatment in
decreasing depressive symptoms with clients with DD. As specified earlier in the
76
literature review section, Psychopharmacology is one of the most widely utilized
treatment modalities for decreasing depression among individuals with DD (Clark &
Gomez, 1999; Lowry, 1998; Meins, 1996). Amongst all individuals with DD,
psychotropic medications are prescribed to 57% of those living in institutions, 41% living
in community settings, and 22% in school settings (Curtis, 1997). Since none of the
respondents mentioned having the capacity to directly prescribe medications to their
consumers, providing this type of depression treatment modality is conducted indirectly,
and this is a noteworthy shortcoming of this study. In this study respondents admit
utilizing psychotropic medication management as the most frequently used modality, yet
none of the respondents have first-hand knowledge of providing this intervention to their
clients.
Another salient feature consisted of respondent feedback recommending brief
interventions by providing emotional support and increasing client’s coping skills to help
maintain their self-image. By helping a person with DD remain socially and
occupationally engaged in their environment, they will be less likely to feel depressed.
This theme suggests that a person’s self-worth is contingent on prevention of depressive
thoughts, which is also evident among depression in the general population. Thus,
emulating similar practices on improving one’s self-worth may also be effective when
treating individuals with mild DD who are also experiencing depression because of
decreased self-worth (see Table 5).
77
Table 5
Frequency Distribution of Most Commonly Used Depression Treatments by the
Respondents
Multiple Responses
Percent of
N
Percent
Cases
Treatment
CBT
26
29.5%
44.1%
modalities
ABA
13
14.8%
22.0%
Referred to Psychiatrists
31
35.2%
52.5%
Other
18
20.5%
30.5%
Total
88
100.0%
149.2%
Relationship Between Prevalence of Depression and Respondents’ Job Description
The researcher explored the relationship between respondents who work directly
and indirectly with DD clients with the prevalence of observed depression. The purpose
of this cross-tabulation is to explore whether the nature of client contact among responses
affects the perception rate of depression among clients. As a result, depression rates
among clients were observed within 2% between respondents working directly and
indirectly with clients, which is a minimal distinction. This suggests respondents’
perceptions are congruent with one another despite having varying interactions with
clients. According to the respondents, since depression occurs in 25-50% of all clients
78
with DD, it is imperative that agencies provide their employees with increased training on
how to effectively address any problems that may arise. Increasing training on this issue
with also increase awareness among community and family members, which will help all
individuals with DD and depression by providing a more competent support network (see
Table 6).
79
Table 6
Cross-tabulation Between Respondents’ Prevalence of Working with Clients with DD
Who are Diagnosed with Depression and Their Job Description
How would you describe your job duties in
regards to your consumer/client interactions?
Direct-counseling-
Indirect-
case management supervisory role
Prevalence of
None
with DD
Total
1
0
0
1
3.2%
.0%
.0%
1.8%
Less than 25% of
12
6
3
21
consumers/clients
38.7%
42.9%
25.0%
36.8%
15
7
8
30
48.4%
50.0%
66.7%
52.6%
3
1
1
5
9.7%
7.1%
8.3%
8.8%
31
14
12
57
100.0%
100.0%
100.0%
100.0%
depression among
respondent’s clients
Other
with DD
25-50% of
consumers/clients
with DD
51-75% of
consumers/clients
with DD
Total
80
Relationship between Direct Client Involvement and Treatment Approaches
The researcher conducted a cross-tabulation of respondents who provide direct
service to their clients and the most commonly utilized treatment modality for depression
in which they work. In contrast to the entire sample of respondents who reported
referring clients to psychiatry as the most frequently used modality, the highest
percentage of those providing direct service indicated using CBT most often. This is
likely attributed to the significant percentage of clinicians (34% of the total sample,
N=60) whose job duties primarily consist of providing direct counseling services. It is
important to note that several of the respondents work with a variety of client populations
other than individuals with developmental disabilities and there is not typically a large
percentage of clinicians employed within the Regional Center system. Nonetheless, this
cross-tabulation demonstrates that a significant percentage of DD clients are receiving
other types of treatments than medication. Also, with increased training, awareness,
competency in agencies, households and communities, the need for controlling
individual’s depression through psychotropic medications should decrease (see Table 7).
81
Table 7
Respondents with Direct Client Interaction and Most Commonly Used Depression
Treatment Modality
Direct-counselingcase management
Treatment
CBT
modality
N=
19
41.3%
ABA
5
10.9%
Referred to
Psychiatrists
14
30.4%
Other
8
17.4%
Total
100%
46
Perceptions of Community Resources Based on Respondents’ Job Title
The data reflects a relationship between respondent’s job title and their opinion of
availability of resources. The majority of case managers and supervisors indicated not
having enough resources for effective depression treatments for their clients, while a
greater percentage of clinicians reported having enough resources. Job title probably
82
plays a key role in this theme due to the nature of respondents’ job responsibilities. For
example, case managers and supervisors are typically involved in a broad range client
services issues and their perceptions are comprehensive with regard to available
resources. On the other hand, clinicians may only be responsible for providing specific
services, thus they may not be as aware of the universal abundance of clients resources.
Understanding this trend may justify the difference in opinions among respondents (see
Table 8).
Table 8
Cross-tabulation Between Respondents’ Opinions of Community Resource Abundance
and Job Title
What is the job title with which you most identify?
Respondents’ perceptions of
Case
Medical
available resources
Yes
No
Unsure
Total
Manager
Clinician
Supervisor
Provider
Other
Total
1
8
4
1
5
19
10.0%
38.1%
33.3%
50.0%
33.3%
31.7%
6
8
6
1
4
25
60.0%
38.1%
50.0%
50.0%
26.7%
41.7%
3
5
2
0
6
16
30.0%
23.8%
16.7%
.0%
40.0%
26.7%
10
21
12
2
15
60
100.0%
100.0%
100.0%
100.0%
100.0% 100.0%
83
Perceptions of Treatment Effectiveness Based on Respondents’ Job Title
The data reflects a relationship between respondent’s job title and their opinions
of current depression treatments for their clients with DD. As a result, the data exhibits a
large percentage of respondents across job titles who indicated current treatments being
“Somewhat effective,” and there was an overwhelming majority among Supervisors
(75%). This may be attributed to data that was previously explained in Table 8, which
showed that respondents’ perceptions of abundance of resources for depression
treatments in individuals with DD to be lacking. Given this presenting theme in the
research, it is understandable that respondents’ overall perceptions of treatment
effectiveness would indicate marginal approval (see Table 9).
84
Table 9
Cross-tabulation Between Respondents’ Perceptions of Treatment Effectiveness and
Their Job Title
What is the job title with which you most identify?
Case
Medical
manager Clinician Supervisor provider
Respondents’
Somewhat effective
Total
5
10
9
1
3
28
50.0%
47.6%
75.0%
50.0%
20.0%
46.7%
0
10
0
1
5
16
.0%
47.6%
.0%
50.0%
33.3%
26.7%
0
0
1
0
3
4
.0%
.0%
8.3%
.0%
20.0%
6.7%
5
1
2
0
4
12
50.0%
4.8%
16.7%
.0%
26.7%
20.0%
Count
10
21
12
2
15
60
Total
100.0%
100.0%
100.0%
perceptions of
depression
Other
Effective
treatment
effectiveness
Very Effective
Not applicable
100.0% 100.0% 100.0%
Qualitative Analysis
Factors that limit effectiveness of depression treatments. Eight (15.4%) of all
respondents attribute lack of empirically supported treatments to limited effectiveness of
depression treatments among individuals with DD; 27 (51.9%) for lack of agency
funding; 37 (71.2%) for lack of community resources; 23 (44.2%) attribute lack of
85
professional experience with specific problem; eighteen (34.6%) for time limitations;
four (7.7%) for “other”; and three (5.8% of all respondents) indicated none “the
treatments I use for depression are effective with DD clients. Additional comments
included:
1)
“My clients are in prison setting so their depression may be secondary to or
contingent their imprisonment.”
2)
“County Mental Health agencies deflect referrals for individuals with
developmental disabilities assuming the primary needs of the individual are
developmental in nature rather than psychiatric.”
3)
“The professionals in the DD arena and those in the MH arena speak two
different languages. The two systems do not have a good open line of
communication. They have not learned or have not been trained to work with this
dually diagnosed population.”
4)
“Deficient follow-through support/with the treatment plan by those with whom
the consumer lives - i.e., parents, staff of residences.”
5)
“Due to language issues.”
6)
“Lack of individuals accepting treatments.”
7)
“Lack of community resources seems to be the biggest problem- County mental
health problems won't typically work with DD population and private Medi-Cal
providers are few and far between.”
8)
“Prison culture in which the weak are exploited by the strong.”
86
9)
“Lack of agency policy to accommodate the special learning needs of the DD
population during the recovery process (policy permits a maximum of eight
counseling sessions).”
Respondents’ suggestions for improving depression treatments in people with DD.
Some of the themes derived from the respondent’s comments on improving treatments
included the need for ongoing assessment with their clients, group counseling sessions,
and an increased emphasis on staff training. Additional comments included:
1)
“Train staff with the appropriate skills to effectively work with DD
individuals.”
2)
“Long-term programming with consistent staff. It takes a while for clients to
trust staff and when there is change, the clients usually become anxious and
irritable which limits improvement.”
3)
“ACRC provide ongoing assessment for MH issues and at least provide open
ended group sessions that would be available for at least crisis interventions. If
group home staff were trained to intervene in MH issues, psychiatric
hospitalization would be avoided.”
4)
Have therapists in mental health agencies who have advanced training in the
treatment of DD clients with depression, and who then are the designated
therapist for treatment of these clients, when they are referred to mental health
agencies for services. The therapist should have training in cognitive behavioral
87
therapy, and psychopharmacological treatment of individuals with mental
retardation and depression.
5)
Development of services and supports for consumers with a dual diagnosis with
a mental health disorder in order to develop coping skills with regard to the
limitations of their disability, with a focus on empowerment toward identifying
strengths while understanding and accepting areas of weakness. Individuals with
DD appear to experience mental health disorders as a result of knowing they have
a disability, but not having the coping tools to mediate feelings of loss or
frustration with their sometimes limited opportunities.
6)
Awareness is key. Being able to understand what depression looks like.ie
symptoms, and teaching staff techniques to support consumers with depression.
Helping staff explore methods they can use to help consumers discover their
strengths and positive attributes. We need to work harder to make the connection
between the consumer's natural talents and strengths and channeling them toward
the accomplishment of personal goals. Promoting independence and respect.
7)
“The two systems need to better understand each other. And individuals in MH
need to be trained in working with the DD populations.”
8)
“More education of psychiatrists about our population through mentoring. More
funding for county mental health services. More university funded programs out
of UCDMC in consort with the mind institute to provide direct services. Bring in
Dr. Ruth Myers for training of physicians and psychiatrists here in Sacramento.”
88
9)
I think the most important thing is correct diagnosis of the problem. Through
my experience, depression is not always easily identified in those with a DD
because it is usually not their presenting disability. Many are seen only as "sad" or
"having a bad day." I think it is crucial for professionals as well as family
members of those with developmental disabilities to understand that they are just
as susceptible to depression as those without developmental disabilities.
10) “If there were more funding for the hiring of individuals with a cognitive
behavior therapy background, for the purchasing of additional one-on-one therapy
hours, and more flexibility in the developing appropriate medicinal cocktails, that
would be helpful.”
11) “Improved coordination of services between those with whom the consumer
lives, the psychiatrist, and the clinician.”
12) “I am not sure. But we as an agency (Alta) need more resources like vendored
psychiatrists to be available to our consumers because our local community has
limited resources to work with our population with depression.”
The next chapter presents the summaries, conclusions, and recommendations derived
from the study.
89
Chapter 5
SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS
Summary
Detecting depression symptoms is difficult for professionals due in large part to
many individuals with DD communicating their feelings differently. The most commonly
used models of depression assessments within the general population incorporate verbal
self-reporting techniques to the clinician. Therefore, professionals may positively benefit
from specific training that teaches them how to identify appropriate verbal and nonverbal symptoms amongst individuals with DD and depression.
Historically, the field of developmental disabilities has lacked specific diagnostic
criteria to directly apply to individuals whom also experience depression. Thus, many
professionals have had to make due with standard criteria that is typically used within
general populations such as the DSM-IV (APA, 2000). This has also prevented family
members from being able to fully understanding the serious nature of depression. Some
practitioners made modifications, and assumptions when utilizing these criteria with
individuals DD, which has led to various concerns regarding reliability and validity of
diagnosing depression in individuals with DD. However, with recent developments
creating specific diagnostic criteria for depression with DD such as the DC-LD (RCP,
2001) and the DM-ID (Fletcher et al., 2007), professionals and family members may have
a greater understanding in how to help facilitate appropriate depression treatment
90
measures. Future research is needed to investigate the long-term effectiveness of these
depression criteria for DD.
In regards to current treatment modalities used for depression in the DD
population, psychopharmacology is the most widely used for two significant reasons.
First, it has shown to be mildly effective with improving certain depression symptoms
such as abnormal sleep patterns, and decreasing agitation. Secondly, since there is no
apparent alternative treatment that demonstrates empirical stability with effectively
improving depression, professionals continue to refer their clients to psychiatrists for
ongoing medication regimens. Therefore, more research findings are needed to determine
superior treatment practices with individuals with DD and depression. Smaller studies
have hinted that cognitive-behavioral therapy (CBT) can be effective with mild cognitive
functioning abilities, especially in group settings there a social network can increase
comfort with discussing issues of depression. However, additional studies are needed to
demonstrate that CBT is sustainable across large samples of individuals with DD.
Conclusions
The researcher identified some major findings in the data in the previous section.
A theme exists with regards to respondents’ job titles and their specific professional roles
pertaining to the types of interactions with clients. According to the statistics in Table 2
there is a positive correlation between respondents identifying as case manager, or
clinician, and having direct interactions with clients from the target population. In
contrast, 92% of supervisors specified an indirect role with their clients. This finding is
91
important because supervisors often play an active role in program development, and the
data indicates that they may be aiding in creating programs without having specific
contact with the clients.
Respondents were asked to specify common symptoms of depression observed in
their clients with DD, and a relevant theme occurred in these findings (see Table 4). A
significant percentage of respondents reported observing depressive symptoms such as
depressed mood, remarkably decreased pleasure (anhedonia), change in sleep patterns,
and feelings of worthlessness within their DD clients. These symptoms are also similarly
identified with individuals in the general population. Therefore, it is possible that
treatment implementation may not have to significantly deviate from current empirically
supported practices used within the general population.
Another notable theme consisted of the prevalence of reported depression among
the respondent’s clients, as a majority indicated depression occurring in up to 50% of all
cases. This finding presents significant concern that agencies, professionals, and family
members may not be receiving enough training pertaining to co-occurring illnesses with
individuals with DD. Increasing the amount of training on this issue to increase
community awareness and competency is very important towards improving matters with
these individuals.
The majority of respondents who were case managers and supervisors indicated
not having enough resources for effective depression treatments for their clients, while a
greater percentage of clinicians reported having enough resources. Case managers and
92
supervisors are typically involved in a broad range client services issues and their
perceptions are comprehensive with regard to available resources. On the other hand,
clinicians may only be responsible for providing specific services, thus they may not be
as aware of the universal abundance of clients resources. This finding demonstrates the
importance of having a balance when surveying respondents because of the likelihood of
encountering certain biases.
The last major finding of this study assessed if respondents felt that they had
enough resources to improve treatment practices for individuals with DD. The majority
felt that the community does not currently have enough resources to improve these
practices. In addition, Table 9 reflects the relationship between respondent’s job title and
their opinions of current depression treatments for their clients with DD. The data
exhibits a large percentage of respondents across job titles who indicated current
treatments being “Somewhat effective,” especially among Supervisors (75%). This may
be attributed to data that was previously explained in Table 8, which reported that
respondents did not feel resources were sufficient to properly improve overall abilities in
obtaining best practices for treatments with individuals with DD and depression.
Recommendations
The findings from the previous section indicate that a significant percentage of
individuals may be experiencing depression as well. There is a distinct need to increase
the amount of training on this issue to improve community awareness and competency.
Another finding, which was also indicative of findings from the literature review section
93
of this study, exhibited that reported symptoms of depression primarily occur with mild
to moderate functioning levels of DD. However, this may also be attributed to the lack of
any substantive findings of depression within severe to profound DD functioning levels.
Lastly, reported findings supported efficacy of professionals observing similar depressive
symptoms between individuals with mild DD and the general population. This suggests
that further research using current treatment modalities for the general population is
needed since some treatments may also work effectively in mild cognitive functioning
levels of DD.
Recommendations for Practice
For practice considerations at the micro level there should be improved awareness
among professionals with regards to properly identifying depressive symptoms in their
clients with DD. Professionals need increased training to be more competent when
handling, or facilitating specific situations should their client with DD have an episode of
depression. As previously indicated in the literature review section, professionals
encounter difficulty with assessing and treating depression in the DD population because
of barriers pertaining detecting depressive symptoms (O’Brien, 2002).
At the mezzo level, family members of individuals with DD also suffering from
depression need increased awareness and education of dual diagnosis. There are
additional related problems and psychological issues that the client’s family have to deal
with, thus more programs need to be conducted at the agency level that serve this
population by involving family members to ensure they understand the relevance of
94
psychological issues involved with depression and DD. As indicated in previous sections
there is limited empirical evidence with providing dependable approaches and more
advancements in the field are needed.
At the macro level, law makers and resource allocators have to be made aware of
the need for allocating a certain pool of money to provide counseling services specifically
to counseling and treatment services to deal with depression issues associated with the
DD population. In describing this study’s research findings in the previous section, the
researcher identified that the majority of respondents believe their agencies do not
provide enough resources needed to improve treatments associated with DD and
depression. For Regional Centers providing services directly to the DD population, it is
important for supervisors, like the respondents who reported not having enough resources
to become increasingly involved in the resource development phase. The regional center
system has an abundance of funding available, but client advocacy is needed to convince
resource allocators that appropriate interventions for improving conditions for those
experiencing depression is an important utilization of agency resources.
Recommendations Relevant for Research
One of the research areas that need further exploration at the micro level is the
level of awareness in individuals with DD regarding their personal psychopathology.
Research needs to place a stronger emphasis on studying the clients’ perspectives. Do
they understand that some of their struggles may have nothing to do with DD, or are they
just responding to ordinary life circumstances in a similar fashion than with depressed
95
individuals in the general population? Furthermore, these individuals need increased
education of the importance of seeking treatment so they can become as self-sufficient as
possible with managing depression.
With mezzo level considerations, we need to understand how depression among
the DD population impacts families and how family members can be supported through
the process. More research is needed to study the impact of depression and how it
impacts their family members. For example, a relative, significant other, or friend who
lives with a person with DD that begins to exhibit symptoms of depression. It is vital
under these circumstances to ensure client’s family members have access to obtainable
resources that provide knowledge on how to help assist them.
Research demonstrates a common frustration experienced by loved ones and
caretakers of individuals with DD to be the lack of empirically supported literature
available in guiding their approach on detecting symptoms of mental illness (Carpenter,
2007). Providers, caretakers, and family members need further instruction to improve
abilities in observing, understanding, and reporting on symptoms of depression with
individuals with developmental disabilities. Without increased research in this area,
families will continue to feel lost with being able to differentiate depression, or another
symptom stemming from their developmental disability.
On a macro level, more research is needed not just regarding DD issues, but how
DD issues interfaces with other psychological issues such as depression. Agencies that
provide clinical services to individuals with DD often struggle with training caregivers to
96
effectively carry out these duties of identifying symptoms of psychopathology. There has
been some progress with exploring training competencies to improve caretakers’ ability
in managing the needs of individuals with DD. In their 2005 study, Luiselli and St.
Amand implemented a training program to address the inexperience and lack of
education of direct-caregivers by rapidly increasing their skill set. A standardized training
curriculum was administered to direct-care employees recently hired at a human services
agency serving individuals with DD. The results indicated improvement in every
participant from pre-testing to post-testing so the study clearly demonstrates immediate
effectiveness increasing competencies. While this study displays potential in agencies
rapidly increasing employee’s competencies more empirical data is needed to properly
explain the various, difficult situations that occur with behaviors related to
psychopathology in the DD population. Individuals with DD are not a homogenous group
as there is a wide range in environment, personality characteristics, and cognitive abilities
(Dodd et al., 2005). Therefore, further empirically supported literature is needed to
address shortcomings that exist with training caregivers to detect depression
symptomatology in DD.
Recommendations Relevant for Behavior/Theory Implementation
Research from previous sections of this study show a potential for micro level
practices with individuals with DD with mild-to-moderate cognitive functioning in
partaking in Cognitive-Behavioral Therapy (CBT). More specifically, the literature posits
that therapy in-group settings is especially beneficial with this population. A study by
97
McCabe et al. (2006) evaluated the group process by conducting a five-week study which
provided CBT to individuals with DD in groups of four. The results demonstrated a
greater improvement in functioning levels of self-esteem and depression. Group therapy
with individuals with DD should be explored in future practices because of the social
networking implications. Also, feedback from McCabe et al.’s 2006 study indicated that
working in a group reinforced how individuals with DD are not alone when suffering
from mental illness. Moreover, participants emphasized the importance of being in small
groups and receiving treatment in a respectful therapeutic environment that was safe from
social embarrassment and ridicule. Therefore, developing trust and security is essential in
developing micro level practices for this population.
Within the mezzo level, an important consideration for future practices consists of
differentiating between effective depression treatments for the general population and
individuals with DD. While the differences of treatment needs have been a focal point of
this study, an important similarity was identified in the research findings that may be
helpful for improved practices. According to these research findings, individuals
experiencing depression in both general population and with mild DD functioning
capacity display relevant symptoms such as variations in daily mood, remarkably
decreased pleasure (anhedonia), change in sleep patterns, and feelings of worthlessness.
These results suggest that since depressive symptoms among individuals with mild DD
are similar to those experienced by the general population, professionals can focus on
98
making moderate deviations for individuals with DD, rather than investing tremendous
resources into developing an overhaul of depression treatments.
On a macro level, there has been a recent development in the field of DD that is
encouraging for the advancements in depression treatment. The Diagnostic ManualIntellectual Disability (Fletcher et al., 2007) was developed by an expert consensus from
the NADD (Association for person with developmental disability and mental health
needs) and was designed to be a revision of the DSM-IV-TR (APA, 2000) to cater to the
needs of individuals with developmental disabilities. The DM-ID (Fletcher et al., 2007)
provides guidance for assessing and diagnosing specific disorders. For example, this
manual provides insight on recognizing challenging behaviors of individuals with
intellectual disability, and on how to differentiate behavioral problems from psychiatric
disorders (Fletcher et al., 2009). The DM-ID (Fletcher et al., 2007) is a monumental
achievement within the field of DD because decreases some of the ambiguity involved in
interpreting other criterion that does not specifically relate to DD. Although a new
manual, and effectiveness is still to be determined, it is step in the right direction for
agencies and professionals providing depression treatments to individuals with DD, for
the clients in need of self-sufficiency in managing issues of dual diagnoses, and for
family members in need of answers and awareness of how to most effectively assist their
loved one.
99
APPENDICES
100
APPENDIX A
Survey
1. What is the job title with which you most identify?
A. Case manager
B. Clinician / therapist
C. Supervisor
D. Medical provider (nurse, physician)
E. Other
Other (please specify) ___________________________
2. How would you describe your job duties in regards to your consumer/client
interactions?
A. Direct – counseling / case management
B. Direct – medical treatment
C. Indirect – supervisory role
D. Other
Other (please specify) ___________________________
3. What is your highest level of education?
A. Masters Degree (MSW, MFT, MS, MA)
B. Ph. D. or Psy. D
C. Law Degree (J.D.)
D. Medical Degree (M.D.)
E. Other
Other (please specify)____________________________
4. How long have you worked with individuals with developmental disabilities
(DD)?
A.
B.
C.
D.
0-5 years
5-10 years
10-20 years
Over 20 years
101
5. In your work experience with individuals with DD, what level of cognitive
functioning do the majority of your consumers / clients exhibit?
A. Mild to moderate range
B. Moderate to severe range
C. Severe to profound range
D. Other
Comments______________________________
6. Approximately what percentage of consumers / clients with DD have you treated
that also had a psychiatric diagnosis (Axis I or Axis II)?
A.
B.
C.
D.
E.
None
Less than 25% of consumers / clients
25-50% of consumers / clients
51-75% of consumers / clients
More than 75% of consumers / clients
7. What are the most common Axis I and Axis II disorders exhibited by your
consumers / clients with developmental disabilities?
A.
B.
C.
D.
E.
F.
G.
H.
Mood Disorders
Anxiety Disorders
Schizophrenia Spectrum Disorders
Substance Abuse / Dependence
Eating Disorders
Personality Disorders
Other
None of my consumers / clients with DD have exhibited an Axis I or Axis
II diagnosis.
8. Please estimate what percentage of consumers / clients with DD you have treated
that also had a diagnosis of depression?
A.
B.
C.
D.
E.
None
Less than 25% of consumers / clients with DD
25-50% of consumers / clients with DD
51-75% of consumers / clients with DD
More than 75% of consumers / clients with DD
102
9. What are the most common symptoms of depression (DSM-IV-TR, 2000)
exhibited by your consumers / clients with DD? (select all that apply)
A. Depressed mood (or irritable mood in children and adolescents) for most
of the day, nearly every day, as indicated by subjective account (e.g. feels
sad or empty) or observation by others.
B. Markedly diminished interest or pleasure in most activities.
C. Significant weight loss or gain, decrease or increase in appetite.
D. Insomnia or hypersomnia.
E. Psychomotor agitation or retardation.
F. Fatigue or loss of energy.
G. Feelings of worthlessness, or excessive or inappropriate guilt.
H. Diminished ability to think or concentrate or indecisiveness.
I. Recurrent thoughts of death, suicidal behavior or statements.
J. Other
K. Not applicable, I haven’t had any consumers / clients with DD and
depression.
10. What interventions do you primarily utilize when treating DD consumers/ clients
with depression in your current practice? (select one or more)
A. Cognitive Behavioral Therapy (CBT)
B. Applied Behavior Analysis (ABA)
C. Refer to medical professional for pharmacological intervention
D. Other
E. None, I do not provide treatment interventions to my consumers / clients.
Other (please specify)________________________________
11. In your professional opinion, how effective are the intervention(s) that you
currently use in treating depressive symptoms?
A.
B.
C.
D.
E.
Not effective
Somewhat effective
Effective
Very effective
Not applicable, I do not provide treatment interventions with my
consumers / clients.
103
12. In which areas do you see the most symptom improvement when treating
depression in consumers / clients with DD? (select all that apply)
A.
B.
C.
D.
E.
F.
G.
H.
I.
J.
Improved mood and/or decreased irritability
Improved appetite
Improved sleep patterns
Decreased psychomotor agitation
Decreased fatigue
Increased self-esteem
Improved concentration or decisiveness
Decreased thoughts of death, suicidal behavioral or suicidal statements.
Other
Not applicable, I haven’t had any consumers / clients with DD and
depression
Comments_________________________________________
13. In a resources depleted community, do you / your agency have the resources to
implement effective interventions for treating depressive symptoms in individuals
with DD?
A. Yes
B. No
C. Unsure
Comments___________________________________________
14. What attributes might limit the effectiveness of depression treatments with the
DD populations in your practice? (select all that apply)
A.
B.
C.
D.
E.
F.
G.
Lack of empirically supported treatments
Lack of agency funding
Lack of community resources
Lack of profession experience with the presenting problem
Time limitations
Other
None, the treatments I use for depression are effective when working with
DD consumers / clients.
Other (please specify)________________________________
15. What are your suggestions for improving interventions / treatments for depression
in individuals with DD?
104
APPENDIX B
Informed Consent
TITLE: Best Practices for Treatment of Individuals with Depression and Developmental
Disabilities
INVESTIGATOR: Joe Friedman
Informed Consent to Participate
PURPOSE: The purpose of this study is to examine best practices in working with
individuals with developmental disabilities (DD) who are suffering from depression.
Social workers and other professionals who work with individuals with DD are the
prospective participants. You are being asked to participate in this study because you
match the demographic of social worker or other professional with at least a Masters
degree in social work or a related field. Participants are recruited from Alta California
Regional Center, local vendors that provide clinical services with Alta California
Regional Center, or a California State Prison that has a large population of individuals
with DD.
PROCEDURE: As a prospective participant of this study you will be asked to answer
questions via on-line survey regarding your perspectives on current treatments available
for depression with individuals with DD. Completing the questionnaire will take
approximately 10 minutes, but no more than 20 minutes. Out of professional courtesy for
your employer we ask that you complete this survey during personal or break time from
normal work hours.
CONFIDENTIALITY: All the findings obtained from this study will be kept
confidential, and your individual responses will not be reported on its own. Only
aggregate information will be used in the report. All email addresses listed in this List
Serv will not be shared with anyone at any point. The survey would be completely
anonymous and there are no markers or any other identifying mechanism that will
identify your survey responses as coming from you. All responses would be untraceable
in terms of any possible computer or any other traceable identification.
BENEFITS: You may gain additional insight into challenges that both you as
professionals in this field go through when helping your clients decrease depressive
symptoms. It is anticipated that the final product may assist professionals such as you
who are engaged in helping individuals with DD increase their quality of life. This can be
done by increasing awareness amongst professionals in this field of the best practices that
are currently available to individuals with DD who are struggling with depression. If you
105
would like to obtain a copy of the final report the researcher will be glad to send you a
copy.
RISKS: Because this is an online survey, there is no risk for his/her participation. Those
respondents who complete the survey after reading the consent form will have responded
completely voluntarily. You are not expected to participate in this study if you wish not
to do so. We do not anticipate any discomfort in result of taking this survey;
QUESTIONS: To request a copy of the final report or if you have any questions,
comments or concerns in regards to this research study, feel free to contact Joe Friedman
via email, joseph.e.friedman@gmail.com or Dr. Antonyappan (916) 278-4091, or via
email Judea@csus.edu.
Following is your bill of rights. Please do not hesitate to contact us if you have any
questions.
Bill of Rights for Study Subjects
1. To be told what the study is trying to find out.
2. To be told what will happen to you and whether any of the procedures, drugs, or
devices are different from what would be used in standard practice.
3. To be told about the frequent and/or the important risks, side effects, or
discomforts of the things that will happen to you for research purposes.
4. To be told if you can expect any benefit from participating and, if so, what the
benefit might be.
5. To be told of other choices you have and how they may be better or worse than
being in the study.
6. To be allowed to ask any questions concerning the study, both before agreeing to
be involved and during the course of the study.
7. To be told what sort of medical treatment is available if any complications arise.
8. To refuse to participate at all, or to change your mind about participating after the
study has started. This decision will not affect your right to receive the care you
would receive if you were not in the study.
9. To receive a copy of the signed and dated consent form.
10. To be free of pressure when considering whether you wish to agree to be in the
study.
CONSENT: I have read and understand this consent form and the Bill of
Rights for Research Study. By completing this online survey, I am agreeing
to participate in the research.
106
REFERENCES
ALTA California Regional Center. (2008). Eligibility information. Retrieved December
13, 2009, from http://www.altaregional.org/eligibilityInfo/
Alta California Regional Center. (2010). Autism. Retrieved February 14, 2010, from
http://www.altaregional.org/whoWeServe/autism/
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental
disorders – Text revised (4th ed.). Washington, DC: Author.
Anderson, G., & Kazantzis, N. (2008). Social problem-solving skills training for adults
with mild intellectual disability: A multiple case study. Behaviour Change, 25,
97-108.
Antony, M. M., & Barlow, D. H. (2002). Handbook of assessment and treatment
planning for psychological disorders. New York: The Guilford Press.
Barlow, D. H. (2001). Clinical handbook of psychological disorders: A step-by-step
treatment manual (3rd ed.). New York: The Guilford Press.
Beck, A. T. (1967) The diagnosis and management of the emotional disorders.
Philadelphia: University of Pennsylvania Press.
Beck, A. T., Steer, R. A., & Brown, G. K. (1996). Beck Depression Inventory – II. San
Antonio, TX: The Psychological Corporation, Harcourt, Brace & Company.
Bentley, K., & Walsh, J. (2006). The social worker and psychotropic medication: Toward
effective collaboration with mental health clients, families, and providers (3rd ed.).
Belmont: Thomson Brooks/Cole.
107
Burt, D. B. (1999). Dementia and depression. In M. Janicki, & A. J. Dalton (Eds.),
Dementia, aging and intellectual disabilities: A handbook (pp. 198-216).
Philadelphia, PA: Brunner/Mazel Inc.
California Health and Human Services Agency. (2010). Budget facts for 2009-10.
Retrieved February 11, 2010, from
http://www.dds.ca.gov/Budget/Docs/BlueBook_CHHSRevisedBudget09.pdf
California Health and Human Services. (2008). Client developmental evaluation report
(CDER), revised January 2008. Sacramento: State of California.
Carpenter, P. (2007). Mental illness in adults with autism spectrum disorders. Advances
in Mental Health and Learning Disabilities, 1, 3-9.
Clarke, D. J., & Gomez, G. A. (1999). Utility of DCR-10 criteria in the diagnosis of
depression associated with intellectual disability. Journal of Intellectual Disability
Research, 43, 413-420.
Cooper, S. A., & Collacott R. A. (1996). Depressive episodes in adults with intellectual
disabilities. Irish Journal of Psychological Medicine, 13, 105-113.
Curtis, J. L. (1997). Psychotropic medication use in people with developmental
disabilities. Maryland Medical Journal, 46, 481-485.
Dagnan, D., & Chadwick, P. (1997). Cognitive behavior therapy for people with learning
disabilities: Assessment and intervention. In B. Stenfert-Kroese, D. Dagnan, & K.
Loumides (Eds.), Cognitive behavior therapy with people with learning
disabilities (pp. 110-123). London: Routledge.
108
Deb, S., Thomas, C., & Bright, C. (2008). Mental disorder in adults with intellectually
disability, 1: Prevalence of functional psychiatric illness among a communitybased population aged between 16 and 64 years. Journal of Intellectual Disability
Research, 4(6), 495-505.
Department of Developmental Services. (2009a). Lanterman Developmental Disabilities
Act. Retrieved December 15, 2009, from
http://www.dds.ca.gov/Statutes/WICSectionView.cfm?Section=4400-4435.htm
Department of Developmental Services. (2009b). Information about developmental
disabilities. Retrieved November 28, 2009, from
http://www.dds.ca.gov/general/info_about_dd.cfm
Department of Developmental Services. (2009c). Information about regional centers.
Retrieved December 11, 2009, from http://www.dds.ca.gov/RC/Home.cfm
Department of Developmental Services. (2009d). Services provided by regional centers.
Retrieved December 11, 2009, from http://www.dds.ca.gov/RC/RCSvs.cfm
Dodd, P., Dowling, S., & Hollins, S. (2005). A review of the emotional, psychiatric and
behavioral responses to bereavement in people with intellectual disabilities.
Journal of Intellectual Disability Research, 49, 537-543.
Dykens, E. (2007). Psychiatric and behavioral disorders in persons with down syndrome.
mental retardation and developmental disabilities, 13, 272-278.
109
Esbensen, A. J., & Benson, B. A. (2007). An evaluation of Beck’s cognitive theory of
depression in adults with intellectual disability. Journal of Intellectual Disability
Research, 51, 14-24.
Fletcher, R. J., Havercamp, S. M., Ruedrich, S. L., Benson, B. A., Barnhill, J. L., Cooper,
S. A. et al. (2009). Clinical usefulness for the diagnostic manual-intellectual
disability for mental disorders in persons with intellectual disability: Results from
a brief field survey. Journal of Clinical Psychiatry, 70, 964-967.
Fletcher, R., Loschen, E., Stavrakaki, C., & First, M. (Eds.). (2007). Diagnostic manual Intellectual disability (DM-ID): A textbook of diagnosis of mental disorders in
persons with intellectual disability. Kingston, NY: NADD Press.
Glick, M., & Zigler, E. (1995). Developmental differences in the symptomatology of
psychiatric inpatients with and without mild mental retardation. American Journal
of Mental Deficiency, 99, 407-417.
Hassiotis, A. (2002). Community mental health services for individuals with intellectual
disabilities: Issues and approaches to optimizing outcomes. Disease Manage and
Health Outcomes, 10(7), 409-417.
Hepworth, D. H., Larsen, J. A., & Rooney, R. H. (2002). Direct social work practice.
Canada: Brooks/Cole.
110
Hogue, T. E., Mooney, P., Morrissey, C., Steptoe, L., Johnston, S., Lindsay, W. R. et al.
(2007). Emotional and behavioral problems in offenders with intellectual
disability: comparative data from three forensic services. Journal of Intellectual
Disability Research, 51, 778-785.
Horner-Johnson, W., & Drum, C. E. (2006). Prevalence of maltreatment of people with
intellectual disabilities: A review of recently published research. Mental
Retardation and Developmental Disabilities Research Reviews, 12, 57-69.
Ingram, R. E., Miranda, J., & Segal, Z. V. (1998). Cognitive vulnerability to depression.
New York: Guilford Press.
King, R., Jordan, A., Mazururek, E., Earle, K., Earle, E., & Runham, A. (2009). Assertive
community treatment – Dually diagnosed: The hyphen was the easy part. Mental
Health Aspects of Developmental Disabilities, 12, 1.
Lindsay, W. R. (1999). Cognitive therapy. Psychologist, 12, 238-241.
Lowry, M. A. (1998). Assessment and treatment of mood disorders in persons with
developmental disabilities. Journal of Developmental and Physical Disabilities,
10, 387-406.
Luiselli, J. K., & St. Amand, C. A. (2005). Staff training in applied behavior analysis:
Improving knowledge competencies of service providers for people with
developmental disabilities. Mental Health Aspects of Developmental Disabilities,
8, 120-125.
111
Marston, G. M., Perry, D. W., & Roy, A. (1997). Manifestations of depression in people
with intellectual disability. Journal of Intellectual Disability Research, 41, 476480.
Matson J. L., Rush K. S., Hamilton M., Anderson S. J., Bamburg J. W., Baglio C. S. et al.
(1999) Characteristics of depression as assessed by the Diagnostic Assessment for
the Severely Handicapped – II (DASH-II). Research in Developmental
Disabilities, 20, 305-13.
Matson, J. L. (1995). The Diagnostic Assessment for the Severely Handicapped-II. Baton
Rouge, LA: Scientific Publishers Inc.
Matson, J. L., Gardner, W. I., Coe, D. A., & Sovner, R. (1991). A scale for evaluating
emotional disorders in severely and profoundly mentally retarded persons;
development of the Diagnostic Assessment of the Severely Handicapped (DASH)
scale. British Journal of Psychiatry 159, 404-9.
McBrien, J. A. (2003). Assessment and diagnosis of depression in people with
intellectual disability. Journal of Intellectual Disability Research,, 47, 1-13.
McCabe, M. P., McGillivray, J. A., & Newton, D. C. (2006). Effectiveness of treatment
programs for depression among adults with mild/moderate intellectual disability.
Journal of Intellectual Disability Research, 50, 239-247.
McGuire, E., & Chicoine, B. A. (1996). Depressive disorders in adults with Down
Syndrome. The Habilitative Mental Healthcare Newsletter, 15(1).
112
Meins, W. (1996). A new depression scale designed for use with adults with mental
retardation. Journal of Intellectual Disability Research, 40, 222-6.
The National Institute of Mental Health (NIMH). (1999). Statistics. Retrieved November
13, 2009, from http://www.nimh.nih.gov/health/topics/statistics/index.shtml
O’Brien G. (2002). Dual diagnosis in offenders with intellectual disability: Setting
research priorities: A review of research findings concerning psychiatric disorder
(excluding personality disorder) among offenders with intellectual disability.
Journal of Intellectual Disability Research, 36, 169-175.
Perry, D. W., Marston, G. M., Hinder, S. A. J., Munden, A. C., & Roy, A. (2001). The
phenomenology of depressive illness in people with a learning disability and
autism. Autism, 5, 265-275.
Piers, E. V., & Harris, D. B. (1969). A manual for the Piers-Harris Self-Concept Scale.
Nashville, TN: Counselor Recordings and Tests.
Preston, J., & Johnson, J. (2009). Clinical psychopharmacology made ridiculously simple
(6th ed.). Miami: MedMaster, Inc.
Prout, H. T., & Strohnmer, D. C. (1991). Emotional problems scales. Professional
manual for the behavior rating scales and the self-report inventory. Lutz, FL:
Psychological Assessment Resources Inc.
Reiss, S., & Aman, M. G. (1998). Psychotropic medication and developmental
disabilities. The international consensus handbook. Washington, DC: Department
of Health.
113
Reynolds, W. M., & Baker, J. A. (1988). Assessment of depression in persons with
mental retardation. American Journal on Mental Retardation, 93, 93-103.
Royal College of Psychiatrists (RCP). (2001). Diagnostic criteria for psychiatric
disorders for use with adults with learning disabilities/mental retardation (DCLD). Occasional Paper OP 48. Gaskell, London: Author.
Rush, J. A., & Frances, A. (2000). Treatment of psychiatric and behavioral problems in
mental retardation. American Journal on Mental Retardation, 105, 159-228.
Stewart, M., Barnard, L., Pearson, J., Hasan, R., & O’Brien, G. (2006). Presentation of
depression in autism and Asperger Syndrome. Autism, 10, 103-116.
Sturmey, P. (2004). Cognitive therapy with people with intellectual disabilities: A
selective review and critique. Clinical Psychology and Psychotherapy, 11, 222232.