Dual Diagnosis Resources

Welcome to our page regarding resources focused on individuals with intellectual/developmental disabilities who also have mental health concerns.  The focus of these items is on freely available web-based resources.  It does not focus on sites for potential service providers or for paid training options.  What you will find is material developed across several countries, provinces and states concerning a wide range of issues related to dual diagnosis.  These include: discussion of diagnosis and definition; publicly available research papers; guidelines; reports; service needs; and other topics.  The format of items in this resource list range from newspaper articles to YouTube videos to research papers through to formal government publications.

While each item has a brief annotation, the purpose is more to give you a broad overview of what might be the focus and content of the material rather than an in-depth commentary or analysis of the material contained in any link.  The items are arranged alphabetically by country and then by date starting with the most recent.

If you wish to make a comment or recommend another link please feel free to contact Dr. Lee at drdslee@gmail.com.


Australia – Western Australia – 2017

A Core Capability Framework: For working with people with intellectual disability and co‑ occurring mental health issues

Western Australian Council of Social Service Inc.

This Framework has been developed for a broad workforce with the aim of achieving access to high quality mental health services and a seamless pathway for people with intellectual disability and a co‑occurring mental health issue, their carer, family members or guardians. It is intended for use by Service Providers working with people with intellectual disability who have a diagnosed mental illness and those who require assessment because their behavior suggests they may have a mental health problem. This 34-page report is divided into 8 sections: introduction; framework development process; background; work force; the capacity framework; glossary; appendices; and bibliography.  Appendix 1 ‑ Training and education resources lists several web sites offering training.  Appendix 2 ‑ Communication tolls and links to other documents provides links to communication related sites related to individuals with intellectual disabilities.

Please see here

 


Australia – New South Wales – 2014

The Guide ‑ Accessible mental health services for people with an intellectual disability; A guide for providers

J. Trollor & A. Ching

This is a 70-page guide. Despite the over‑representation of mental disorders in people with an intellectual disability, access to mental health care falls far short of what is required to meet the needs of this population. Many people encounter significant barriers which prevent timely access to appropriately skilled mental health supports and services. Mental health professionals and services are often challenged by the complex needs of people with an intellectual disability. The Guide takes an approach which is underpinned by a human rights framework. This framework stipulates the rights of people with disabilities to accessible health supports and services, including those needed as a result of the disability. Sections of the guide are: introduction; background; guiding principles; key components of accessible mental health services; implication for mental health services; glossary; and core reference group.  It also contains 9 appendices focused on tools for inclusive practice.  Contains 59 references.

Please see here


Australia – 2010

Intellectual Disability Mental Health First Aid Manual ‑ 2nd ed.

R. Pappas & M. Frize

This is adapted from Kitchener BA, Jorm AF, Kelly CM, Pappas, R, Frize, M. Intellectual Disability Mental Health First Aid Manual. 2nd ed. Melbourne: Mental Health First Aid Australia; 2010.  This manual is 125 pages long and is divided into three sections: Introduction to Mental Health Problems, Mental Health First Aid and Intellectual Disability; First Aid for Development Mental Health Problems and Intellectual Disability; and First Aid for Mental Health Crises and Intellectual Disability.  Mental health issues covered are: depression, anxiety, psychosis, substance misuse, suicide, panic attacks, traumatic events and aggressive behaviors. Contains 155 references

Please see here


Australia – New South Wales – date unknown

IDMH e‑learning

This site contains information, data, documents, pages and images prepared by the University of New South Wales (Australia).  The Department of Developmental Disability Neuropsychiatry (3DN) provides free eLearning about intellectual disability to professionals, carers, and consumers. Our goal is to improve your knowledge, skills and confidence, leading to better mental health and wellbeing for people with an intellectual disability.  This site has been developed collaboratively and was funded by the NSW Department of Family and Community Services (Ageing, Disability and Home Care), the NSW Ministry of Health (Mental Health and Drug and Alcohol Office), and the Health Education and Training Institute.

Please see here


Brazil – 2014

Interface between Intellectual Disability and Mental Health: hermeneutic review

T. De Lima e Silva Surjus & R. T. Onocko Campos

A literature review was conducted aiming to understand the interface between the Intellectual Disability and Mental Health fields and to contribute to mitigating the path of institutionalizing individuals with intellectual deficiencies. The so‑called dual diagnosis phenomenon remains underestimated in Brazil but is the object of research and specific public policy internationally. This phenomenon alerts us to the prevalence of mental health problems in those with intellectual disabilities, limiting their social inclusion. The findings reinforce the importance of this theme and indicate possible diagnostic invisibility of the development of mental illness in those with intellectual disabilities in Brazil, which may contribute to sustaining psychiatric institutionalization of this population.  In the states of Rio de Janeiro and Sao Paulo, the population with intellectual disabilities configured the second highest percentage by diagnostic category among residents of psychiatric hospitals – 26.4% and 30.5%, respectively, surpassed only by psychoses.  In Brazil, although public policies coexist in both education and health fields, questioning regarding the mental health problems of the population with intellectual disability does not seem to occur in either of them, despite the fact that two censuses of residents of psychiatric hospitals warn of the possible and silent destination.  This is a conceptual paper aimed at addressing issues in Brazil.  Has 35 references.

Please see here


Canada – 2018

Understanding Mental Health, Developmental Disabilities and ABI

Canadian Council on Rehabilitation and Work

Provides brief descriptions of common mental health problems (e.g. anxiety, OCD, mood disorders etc.).  This is followed by a discussion regarding the concept of concurrent disorders with particular reference to mental health and developmental disabilities.  It is noted that prevalence rates for dual diagnosis are difficult to identify because studies apply differing criteria in defining developmental disabilities and mental health issues. For example, definitions of developmental disability often use varying criteria in terms of severity of the disability or IQ level, and similarly, there is an inconsistency in how mental health problems are defined in this population. It is generally agreed, however, that individuals with developmental disabilities are three to four times more likely to develop emotional, behavioural and psychiatric difficulties than the general population.  The last section deals with acquired brain injury and mental health issues.

Please see here


Canada – Alberta – 2017

Care Experiences of Adults with a Dual Diagnosis and Their Family Caregivers

D. Nicholas, A. Calhoun, A. M. McLaughlin, J. Shankar, L. Kreitzer, & M. Uzande

Global Qualitative Nursing Research, 4, 1‑10. Individuals diagnosed with developmental disability and mental illness (a “dual diagnosis”) contend with multiple challenges and system‑related barriers. Using an interpretive description approach, separate qualitative interviews were conducted with adults with a dual diagnosis (n = 7) and their caregiving parents (n = 8) to examine care‑related experiences. Results indicate that individuals with a dual diagnosis and their families experience misunderstanding and stigma. Families provide informal complex care amid insufficient and uncoordinated services but are often excluded from formal care planning. A lack of available funding and services further impedes care. While negative care experiences are reported as prevalent, participants also describe instances of beneficial care. Overall, findings indicate a lack of sufficiently targeted resources, leaving families to absorb system‑related care gaps. Recommendations include person‑ and family‑centered care, navigation support, and capacity building. Prevention and emergency and crisis care services, along with housing, vocation, and other supports, are needed. Practice and research development regarding life span needs are recommended.

Please see here


Canada – New Brunswick – 2017

Intellectual Disability, Mental Health and Rights‑Based Approaches

New Brunswick Association for Community Living

This is a link to an open‑source e‑book.  The book is divided into three modules: Intellectual Disability, Mental Health and Rights‑Based Approaches; Intellectual Disability and Mental Health; and Rights‑Based Approaches.  A number of pages have video clips that expand on the content.  It ends with links to a quiz sheet to test your knowledge as well as a link to an answer sheet.

Please see here


Canada – Ontario – 2017

Individuals with developmental disabilities are an invisible population in Canada’s mental health system

Y. Lunsky & R. Balogh

Almost half of those with developmental disabilities are diagnosed with mental illness or addiction — and they are among the most frequent visitors to emergency departments. Those with developmental disabilities, which includes Down syndrome, fetal alcohol syndrome and autism are rarely recognized in mental health statistics, policy priorities, education and training or even clinical practice. There was a time when this population was not “seen” within mainstream mental health initiatives because they received their care in a separate system, primarily through institutional care. But with the closure of institutions and an emphasis on community inclusion Canada over the last several decades, those with developmental disabilities are expected to access physical and mental health care, like everyone else, in their home communities. Unfortunately, their health needs are often not adequately addressed.  And our inability to ‘see’ this population is costing the health system enormously.

Please see here


Canada – Ontario – 2016

Nowhere to Turn: Investigation into the Ministry of Community and Social Services’ response to situations of crisis involving adults with developmental disabilities

P. Dube

This is the main statement from the Executive Summary.  It is now recognized that the model of institutional care for individuals with developmental disabilities, which prevailed in this province for over a century, was a failure. The Premier, on December 9, 2013, apologized for the suffering it caused, and Ontario has moved on to embrace a community‑based approach for the developmental services sector, promoting social inclusion, individual choice and independence. This is a positive evolutionary policy shift. Unfortunately, despite the government’s recent efforts, there remain individuals on the margins, living with profound and complex disabilities and faced with extreme circumstances. When they reach a crisis point, service gaps often leave them and their families without any real choice, and dependent on a system unresponsive to their needs. Without significant additional reform, many uniquely vulnerable people will continue to be lost in the system and experience harm because of inadequate supports and services.  The report is 182 pages.  The report contains 60 recommendations with summaries of the Ministry of Community & Social Services responses.

Please see here


Canada – Ontario – 2016

The Creation of a Flexible Assertive Community Treatment (FACT‑DD) Team for Dual Diagnosis Services at The Royal Ottawa Healthcare Group

S. Farrell & R. Pow

This PowerPoint presentation focuses on the development of services within the Champlain Local Health Integration Network (LHIN) that encompasses and the Ottawa area and surrounding region.  This is an overview of the region’s response to provincial review of dual diagnosis programs that found that most of the continuum of care (especially treatment services) was missing in the region.  The continuum of care components were: specialized inpatient services; multi‑disciplinary treatment services; outpatient treatment services with follow‑up and consultation services.

Please see here


Canada – Ontario – 2015

Outcome Evaluation of a Specialized Treatment Home for Adults with Dual Diagnosis and Challenging Behaviour

K. Chartier & M. Feldman

Journal of Developmental Disabilities, vol. 21, no. 2, 69‑82.  Article focuses on individuals with a range of intellectual disabilities who were also diagnosed with a psychiatric disorder (e.g. autism, mood or anxiety disorder) as well as demonstrating high intensity but low frequency challenging behaviors.  Most individuals had no medication changes during intervention or had their medications decreased.  Functional behavioral assessment observation and preference assessment were used.  Treatments followed a positive behavior support model.  All individuals were discharged successfully to family homes, group homes or supported apartments.

Please see here


Canada – Alberta – 2015

Supporting Individuals with Intellectual Disabilities & Mental Illness: What Caregivers Need to Know

S. Melrose, D. Dusome, J. Simpson, C. Crocker & E. Athens

This is an e‑book of 111 pages with seven chapters with each chapter having its own references.  The chapters are: Support Work ‑ The fundamentals; What’s in a Name ‑ The language of intellectual disability; An Overview of Mental Illness ‑ Common psychiatric disorders; Common Physical Concerns ‑ Factors impacting health; When the Problem is Pain ‑ Assessing for pain; Behavior That Hurts ‑ Self‑injuring and aggressive behavior; Sexuality ‑ Promoting healthy sexual expression.  This also contains audio compendia for each chapter.

Please see here


Canada – Alberta – 2013

Supporting Persons with Developmental Disabilities and Co‑occurring Mental Illness: An Action Research Project

S. Melrose., P. Wishart, C. Urness, B. Forman, M. Holub, A Denoudsten

This paper presents findings from a naturalistic action research project that implemented a Wrap Around mental health promotion activity with six individuals dually diagnosed with a developmental disability and mental illness.  The teams met regularly, and facilitators guided discussions to focus on clients’ strengths, their goals and strategies for success. Data collected from 13 interviews with clients and members of their teams was analyzed to reveal three themes, our findings. First, regular meetings where clients seek and receive support from individuals, they value can help address escalating symptoms of mental illness. Second, constant caregiver turnover heightens client anxiety, which in turn exacerbates illness. Third, limited paid in‑service and networking opportunities are available to caregivers.

Please see here


Canada – Alberta – 2013

Alberta Health Services online available and accessible learning resources

Authors unknown

This is an informal collection of online available learning/training resources related to Complex Service Needs or PDD/specific information and/or Dual Diagnosis services. This list is a sample of websites, education and training sites that may be of interest to service providers. This list is not exclusive or exhaustive but is a starting point to find useful and relevant education.

Please see here


Canada – Alberta – 2013

Developmental Disabilities Co‑occurring with Mental Illness

S. Melrose

The co‑occurrence of mental illness in persons with developmental disabilities (PDD), also known as developmental disabilities (DD), as intellectual disabilities (ID) is not well understood.  Adults with intellectual disabilities can experience mental illness at a prevalence rate of 40.9%, 3 to 4 times greater than the general population.   When admitted to psychiatric units, their problems can be more severe, and they can receive more interventions than individuals without developmental disabilities.  In Canada estimates suggest that 380,000 Canadians and between 6,000 and 13,000 Albertans live with a dual diagnosis. About forty‑two percent of all hospitalizations among PDD Canadians occurred for psychiatric conditions. Canadians with PDD are at fifteen times higher risk of receiving a psychiatric admission of schizophrenia and this risk is also 3 to 4 times greater than the general population.  Outlines perceived service gaps.  Has an extensive reference list.

Please see here


Canada – Ontario – 2013

Enhancing Mental Health Care Across the Lifespan for Ontarians with Developmental Disabilities

Authors Unknown

People with developmental disabilities have a two to threefold increased risk of an additional diagnosis of mental illness.  Right now, 1 in 2 Ontario adults (under 65) with a developmental disability have a dual diagnosis.   Many of these individuals have a serious mental illness and/or experience significant behavioural challenges that can, without access to specialized mental health services from childhood through adulthood, leave them and their families in crisis. Autism Spectrum Disorder (ASD) is the most common developmental disability amongst the dual diagnosis population. Challenging behaviours amongst those with ASD can begin at a young age. Signs of mental illness tend to emerge later in childhood (between the ages of 9 and 12) and by adolescence, 53% of teenagers with ASD will have a mental illness. Many young adults and adults with a dual diagnosis struggle throughout their lives. More than 80% demonstrate poor outcomes across a variety of domains.  Only 22‑30% have a high school diploma, 33‑ 56% are employed (though only 12% work independently), 38‑ 56% live with their parents, and only 4‑8% live independently. Two brief case studies are provided.  The two primary recommendations are for strengthening primary care and developing effective secondary care.

Please see here


 

Canada – Ontario – 2013

A Family Guide to Dual Diagnosis

Y. Lunsky J. Weiss, C. O’Grady, & W. Skinner

In 2007 the Dual Diagnosis Program at CAMH set out to research the experience of families who care for a family member with dual diagnosis. We learned from families that they would like:

  • more information about mental health care and community supports for adults with developmental disabilities
  • skills to work with professionals and help manage problems before they escalate into a crisis
  • a seamless continuum of supports across the lifespan
  • stable support by well‑trained and dedicated staff. In collaboration with the Griffin Centre, a Toronto‑ based community agency, we ran focus groups with family members of people with dual diagnosis. We asked them about their experiences and what kinds of supports they needed. They told us that they wanted to:
  • learn about dual diagnosis
  • develop skills that would help them deal with the impact of dual diagnosis on their family life
  • collaborate with their family members who have dual diagnosis and with treatment providers to find ways to manage mental health problems and developmental difficulties.

This resource is divided into three parts: Part I: Understanding dual diagnosis provides an overview of dual diagnosis, an introduction to treatment options and information about developmental disabilities and mental health problems and how they interact. Part II: Supporting families focuses on the impact of dual diagnosis on family life. It includes information on experiencing, understanding and coping with dual diagnosis, and on self‑care strategies for family members. Part III: Working with services explores treatment and support for people affected by dual diagnosis. It includes strategies for navigating the mental health and developmental service systems and information about psychosocial and medication treatment options and ways to deal with crisis situations.

Please see here


Canada – Ontario – 2012

Dual diagnosis best practices for children

Evidence In‑Sight

The questions asked were: What are best practices in pediatric dual diagnosis assessment and intervention? and Are there evidence‑informed services, practices, and/or programs for pediatric dual‑diagnosis services?  Findings 1. There is relatively little research specific to assessment and intervention in pediatric dual diagnosis. Most of the available research pertains to adults with a dual diagnosis.  2 The mental health domain and development disability domain have traditionally been stand‑alone fields. This creates problems with accurate diagnosis, accessibility of services, and developing effective treatment plans for individuals with dual diagnosis. 3. Currently, there are no treatment programs for children and youth with dual diagnosis that have accumulated enough evidence to be considered evidence‑based.

Please see here

 


Canada – Ontario – 2012

Dual Diagnosis An information guide

Y. Lunsky & J. Weiss

This guide was developed for the families of people with developmental disabilities. It provides basic information about dual diagnosis and explains what we know about services and supports and how to best access them. It also suggests ways to take care of yourself while being a caregiver.

What is dual diagnosis?

Developmental disability.

How common is dual diagnosis?

Recognizing dual diagnosis

The relationship between developmental disability and mental health problems

Treatment

Treatment principles

Where do people get treatment?

Treatment planning

Types of treatment

Coordinating treatment

Hospitalization

Crisis and emergency

Crisis and emergency plans

Getting treatment in an emergency

How dual diagnosis affects families

Family relationships

Self‑care for family members

Developing resilience

Self‑care strategies

Building a self‑care plan

Please see here

 


Canada – Ontario – 2010

The Clinical Profiles of Women with Intellectual Disabilities and Affective or Adjustment Disorder Utilizing Mental Health Services

M. Palucka, M. Reid, and A Holstein

The Clinical Profiles of Women with Intellectual Disabilities and Affective or Adjustment Disorder Utilizing Mental Health Services

Journal Article ‑ Journal on Developmental Disabilities ‑ Women with disability often express the same psychological needs as their non‑disabled peers: a need for autonomy and self‑determination, belonging, being in an intimate relationship, getting married, having children, or holding a job. Expression and fulfillment of these needs is at best difficult for someone with an intellectual disability and becomes even more difficult if there are other complicating factors present such as dependency, anxiety, or self‑esteem issues. This report presents a review of referrals to a specialized dual diagnosis program for women with mild levels of intellectual disability whose maladaptive behaviours could best be conceptualized as stemming from care providers’ inadequate understanding and support of their psychological and emotional needs. The challenges of supporting women who present with complex psychological, emotional, and interpersonal needs, and the implications for staff training and staff support are discussed.

Please see here


Canada – Ontario – 2009

Supports and services for persons with a dual diagnosis: A resource manual for York region families

York Support Services Network staff

This handbook is the Simcoe version of a Simcoe York effort to prepare resource material for persons with an intellectual disability and mental health needs (dual diagnosis). It is meant to be helpful to consumers, family, friends, advocates and service providers. It identifies key organizations in Simcoe County and the surrounding area and effective strategies to help you plan and get the supports and services you need. The focus is primarily adults but does include some services for youth as well.  This is an update from the original manual published in 2004 published under the direction of the Simcoe York Dual Diagnosis Education Committee.

Section one gives an introduction into dual diagnosis.  Section two deals with issues such as, getting a case manager, what to do during a crisis and what government programs might be available.

Please see here


Canada – Ontario – 2009

50 percent of children with developmental disabilities also have mental health issues

Tralee Pearce

Globe and Mail article ‑ Using family stories this article outlines the issues and complexities surrounding developmental disabilities and mental health

Please see here


Canada – British Columbia – 2008

The Other Dual Diagnosis: Developmental Disability and Mental Health Disorders

B. Tang, C. Byrne, R. Friedlander, D. McKibbin, M. Riley, A. Thibeault

Defines the term to separate it from the other common usage of substance use problem and mental illness.  Outlines the relative newness of needing to service such individuals in community settings. Community health services are still trying to find a balance between accessing generic services when appropriate and developing specialized resources when applicable and when possible.  However, there seems to be little planning in place to prepare for a new generation of children and adults with DD who have lifelong needs, including many with autism spectrum disorders, complications of prematurity, and fetal alcohol spectrum disorders.  BC has closed the institutions but is still grappling with providing appropriate and sufficiently funded community‑ based services for mental health needs. Issues of addressing this dual diagnosed population within existing health and social services is discussed. Case examples are provided.

Please see here


Canada – British Columbia – 2007

Planning guidelines for mental health and addiction services for children, youth and adults with developmental disability.

C. Byrne, A. D. Hurley, R. James

This is a 172-page e‑book to provide guidelines intended to support the planning and development of mental health and addiction services for children, youth, and adults with developmental disabilities (DD) and co‑ occurring mental health disorders in British Columbia. Chapters are: Developmental Disabilities ‑ Definitions and descriptions; Planning Guidelines; Description of Programs and Services; Core Information and Research on Developmental Disabilities; Psychiatric and Other Medical Disorders Co‑occurring with Developmental Disability; and Prevention and Social Determinants.

Please see here


Canada – British Columbia – 2006

Mental Health and Developmental Disabilities in Children

Children’s Health Policy Centre

Approximately 30% of children with developmental disabilities also suffer from co‑occurring mental disorders. A literature review looking for systematic reviews covering 1994‑2005 was done focused on treating mental disorders in young people with developmental disabilities (ages 0‑18).  Of the 66 reviews retrieved 12 met inclusion criteria. Most reviews focused on treating the underlying developmental disabilities in children with pervasive developmental disorders and mental retardation.  No reviews specifically assessed treatments for Fetal Alcohol Syndrome or for co‑existing mental disorders in children with developmental disabilities.  Fourteen recommendations are provided divided into: general principles; psychosocial interventions; pharmacotherapy; and alternative interventions

Please see here


Canada – British Columbia – 2006

Dual Diagnosis: A guide for families of a child with an intellectual/developmental disability and a mental disorder

The FORCE Society and Family Support Institute

Following a brief introduction this guide uses vignettes from various perspectives to outline the issues facing children with mental handicaps and mental health issues and their and families.

Please see here


Canada – Ontario – date unknown

Dual Diagnosis

Canadian Mental Health Association ‑ Ontario

Gives a brief definition of a dual diagnosis and in a footnote identifies the use of the term to also mean mental health issue and substance abuse.

Please see here


European Union – 2018

Special edition: mental health and intellectual disabilities in Europe

Ken Courtenay

Meeting the mental health needs of people with intellectual disabilities is a challenge to any health care system. In this issue, various models of care from six countries in Europe are described with the aim of learning from each other. The contributors provide insights from their personal clinical and academic backgrounds often making reference to the work of colleagues in other countries demonstrating the awareness of how other models of practice can inform local practice and policy. Countries discussed are the UK, Ireland, Norway, Germany, Switzerland and Holland.

Please see here


Norway – 2008

Psychiatric disorders and behavior problems in people with intellectual disability

E. Myrbakk & S. von Tetzchner

Research in Developmental Disabilities, 2008, vol 29, 316‑332. The relationship between behavior problems and psychiatric disorders in individuals with intellectual disability is still unresolved. The present study compares the prevalence and pattern of psychiatric disorders in individuals with intellectual disability who were assessed on the ABC to have moderate and severe behavior problems and a matched group of individuals without such problems. Both groups were living in community settings and had their intellectual disability varied from mild to profound degrees. The participants were screened for psychiatric disorders using four different instruments; the Reiss Screen, the Mini PAS‑ADD, the DASH‑II and the ADD. The group with moderate and severe behavior problems showed significantly more symptoms of psychiatric disorders than the group without such problems when items related to behavior disorders were omitted, and the majority of the participants with behavior problems had symptoms of the main psychiatric disorders

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USA – 2018

Emerging Best Practices for People with an Intellectual/Developmental Disability Co‑Occurring with Serious Mental Illness

R. Fletcher

Outlines the National Association for the Dually Diagnosed which was established in 1983. Best practice assessment options are outlined looking at biological, psychological and social factors.  For assessing mental health, the following 4 areas need to be addressed: source of information and reason for referral; history of presenting problem and past psychiatric history; personal and family health and behavioral health history; and social and developmental history.  Fletcher outlines 10 factors complicating diagnostic practice.  Further discusses how a behavioral pattern may be a result of a psychiatric condition.  Compares DSM‑5 to DM‑ID‑2. Outlines adaptations of psychotherapy for people with intellectual or developmental disabilities.  Identifies barriers to service delivery.  Ends by discussing planning practices and inter‑ systems collaboration.

Please see here


USA – Washington – 2017

The Guidebook: Meeting the mental health needs of people with intellectual disabilities

P. Diaz, K. Kimball, D. O’Neal, J. Shook, & S. Devenney

The Guidebook was developed by a team of professionals currently serving individuals with intellectual disabilities in the community. It originated out of the need to open the dialogue among providers and systems to better serve people experiencing co‑occurring intellectual disabilities and mental health disorders. It is intended to be a resource for mental health providers who serve or would like to serve individuals with intellectual disabilities and mental health disorders. It applies to all settings where mental health care is provided, from intake to crisis. This guidebook discusses the relationship between intellectual disability and mental health (e.g. biological, psychological and social factors).  It has a section on guiding principles and values and a section on optimizing mental health services for people with intellectual disabilities.

Please see here


USA – 2017

The Vital Role of Specialized Approaches: Persons with Intellectual and Developmental Disabilities in the Mental Health System

D. Pinals, L. Hovermale, D. Mauch, & L. Anacker

This is a 50-page report from the National Association of State Mental Health Program Directors. Although persons with IDD are often seen in medical and psychiatric systems of care, “treatment as usual” for them has typically not been sufficiently nimble, knowledgeable, or adept. On the individual case level, a biopsychosocial formulation for assessment and treatment is necessary to approach a given situation when a person with IDD is in the mental health system. Cookie cutter approaches to the treatment of mental illness can lead to negative consequences and can fly in the face of the critical importance of planning care around individual need—so called person‑centered care—and maximizing the ability of self‑ directed living unless reason and judgment are impaired to the point that health and safety are compromised.  A range of recommendations are given including: organizational structures to meet mental health needs; trauma‑informed care; behavioral supports; the forensic system; and financial supports and entitlements.

Please see here


USA – California – 2017

Mental Health Issues for Individuals with Intellectual & Developmental Disabilities

K. Toto

This presentation introduces the issues of intellectual/developmental disability and mental health.  It lists several social, cognitive, environmental, ability, psychological and stress risk factors.  Following the outline of risk factors the next section deals with mental health diagnosis, followed be brief point form outlines of common mental health conditions.  After outlining each mental health condition, a slide is presented related to how such a mental health condition may present for an individual with an intellectual/developmental disability.  The last section of the presentation focuses on interventions, strategies and supports.

Please see here


USA 2016

Including Individuals with Intellectual/Developmental Disabilities and Co‑Occurring Mental Illness: Challenges that Must Be Addressed in Health Care Reform

National Association for the Dually Diagnosed

The nation’s response to the service needs of individuals of all ages with co‑occurring intellectual/developmental disabilities (IDD; e.g., autism) and mental illness (MI) is of concern. Nationally, State IDD and mental health (MH) authorities are responsible for funding and monitoring needed services yet support and funding is uneven. An increasing number of publicly funded programs are hard pressed to provide the levels of assistance, therapy, primary care, long‑term medical oversight and individualized supports that people with these co‑occurring conditions need to live, work, and lead regular lives in the community.  In view of the high prevalence of psychiatric disorders among people with IDD, this group should not be considered as a special population, but as a core constituency in both health and human services settings.  Discusses managed health care in relation to this population.  Has recommendations regarding person‑centered services; workforce competencies and training; readiness review; funding; support for families; inter‑systems service coordination; state contracts with MCOs; insurance benefits; support to develop models of care and treatment; and quality and performance expectations.

Please see here


USA – 2016

The co‑occurrence of mental disorders in children and adolescents with intellectual disability/intellectual developmental disorder

K. Munir

Current Opinion in Psychiatry, 29, 2, 95‑102.  This paper gives a broad overview of the epidemiological data related to developmental disability and specifically to its co‑occurrence with mental health disorders.  It is noted that despite early progress in research in epidemiology of ID/IDD and the resurgence of interest in psychiatric epidemiology in the post‑DSM‑III era, the two streams did not converge for years towards studying mental illness within the population of individuals with developmental disabilities. This may reflect the dichotomy in mental health and ID/IDD services during this period. It is therefore not surprising that ID/IDD, as well as ASD and pervasive developmental disorders – not otherwise specified were excluded from studies citing challenges in ascertainment, difficulties in assessment by means of self‑report or semi-structured or structured interviews; as well as ethical protections of vulnerable research study participants.  It was further noted that population‑based estimates of co‑occurring mental disorders in children and adolescents with ID/IDD vary considerably, ranging from 10 to 60% because of methodological limitations in terms of biased sampling, changes in diagnostic criteria, different IQ cut‑offs, and approaches use to measure

Please see here


USA – Arizona – 2016

Underserved Arizonans: Mental health and developmental disabilities

E. McFadden & D. Daugherty

This report introduces the under discussed topic of mental health and substance abuse and how it impacts people with I/DD and their families. It will also include the findings of focus groups conducted in 2015 with 39 adults with lifelong mental health issues and their families in Phoenix, Flagstaff, and Tucson to better understand the day‑to‑ day experiences of living with a mental health issue, the barriers they confront, and how they have successfully overcome them.

Please see here


USA – 2015

Intellectual/Developmental Disability

D. McNeilis

This site contains the slides from a presentation on Intellectual Disability and Mental Health.  Outlines the historical system separation between Mental Health and Intellectual/Developmental Disability (ID/D).  Outlines some of the differences in terminology used in both systems.  Identifies that people with ID/D are 3 to 4 times more susceptible to psychiatric disorders and that such individuals can display a wide range of psychopathology.  Outlines definitional problems with IDD definition.  Outlines the issues of genotype vs phenotype, etiology vs description and a range of issues related to the interaction between ID/D and mental health.

Please see here


USA – 2015

Health and Mental Health in Adults with Intellectual Disability: Findings from a large, nationally representative database

S. Haleigh & S. Havercamp

This presentation will explore the findings and implications that are possible when using a US developmental disability (DD) protocol for health research.  The National Core Indicators (NCI) is a quality management protocol for the developmental disabilities service delivery system directed by the Human Services Research Institute and the National Association of State Directors of Developmental Disabilities Services.  This protocol requires a sample of at least 400 adults with developmental disabilities to be randomly drawn from state DD service registries from each state participating in the NCI protocol.  Study 1 focused on access to common physical health services (e.g. pap test, dental visit, flu shot).  Study 2 focused on Mental Health (e.g. psychiatric diagnosis, behavior problem, stress, social support).  This site contains a video webinar as well as the PowerPoint slides from the presentation.  Slides contain several references.

Please see here


USA – Missouri – 2014

Developmental Disabilities and Mental Health

M. Guenther & A. Quigg

YouTube video ‑ This is an interview with Dr. Anna Quiqq, PhD, BCBA from Burrell Behavioral Health (Missouri).  Gives a simple introduction to how developmental disability and mental health can go together.  Does focus on early detection in children.

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USA – Ohio – 2013

Dual Diagnosis: Overview of Therapeutic Approaches for Individuals with Co‑Occurring Intellectual/Developmental Disabilities and Mental Illness for Direct Support Staff & Professionals working in the Developmental Disability System

T. Burke

This paper is written for professionals in the mental health and developmental disability sectors who want to have a better understanding of adults and children who need the services of both. Individuals with Intellectual Disabilities (ID) have significant needs for mental health services, but too few therapists and psychiatrists are prepared to serve them well. Historically, individuals with developmental disabilities were routinely denied psychotherapy. However, there is a growing body of research to support its efficacy and an increasing number of experienced clinicians adapting traditional evidenced based best practices to successfully treat individuals with co‑occurring conditions. For those who work in traditional DD services, there are many opportunities to provide services in a therapeutically supportive and trauma informed manner. Treatment options discussed are: dialectical behavior therapy; interactive behavior therapy, IBT adapted for sex offenders; mindfulness‑based psychotherapeutic practices; and positive psychology practices.

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USA – 2012

Population Based Strategies for Supporting People with Co‑occurring Mental Illness and Intellectual/Developmental Disabilities

C. Moseley

This is a presentation given at the Olmstead Policy Academy and reviews in the broad level state of services for individuals with developmental disabilities across the US.  For example, notes that in 2012 30 states have budget shortfalls and that annual increases of 8.3% would take until 2019 to return to pre‑recession levels.  As of 2012 12 states no longer had institutional care. Finds that 33% of the DD population has a mental illness.  Wide range of data are provided.

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USA – New York – 2011

S. Scharoun

This guidebook has five sections ‑ What is dual diagnosis; Why is it so hard to make this diagnosis; How is a dual diagnosis established; Who can help; and Where can I learn more.  It is 31 pages in length.  While this guidebook was supported by the New York State Developmental Disabilities Planning Council it is broadly applicable.  The sections deal with more technical information but manages it well.  The section on Why is it so hard to make this diagnosis has a nice section on diagnostic overshadowing.

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USA – Texas – 2010

Co‑Occurring Mental Illness and Developmental Disabilities

M. Quintero & S. Flick

Journal article ‑ Social Work Today, Vol. 10. No. 5, pp 6. Clarifies the two uses of Dual Diagnosis (mental health issues and substance abuse versus developmental disability and mental health issues) focusing on the limited understanding of the latter.  Outlines the ADAPT program (Adults Developmental and Psychiatric Treatment) program that was developed in 1995 in Harris County, based in Houston.  ADAPT is a day‑habilitation treatment for adults with dual diagnoses for intellectual disabilities and mental illness. It helps adults develop coping and self‑management skills and access local resources needed to learn, work, and live as contributing members of their communities. Day‑habilitation is a structured schedule of therapeutic activities designed to help each participant develop the skills

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USA – 2008

Treatment Models for Treating Patients with Combined Mental Illness and Developmental Disability

E. Davis, J. Barnhill, & S. A. Saeed

Psychiatry Quarterly, 79, 205‑223.  Perhaps the greatest challenge for clinicians and service providers is to accommodate the heterogeneous nature of both DD and mental disorders. The quality, availability and access to these services vary considerably. Many programs are concentrated in metropolitan or university‑based centers and pose hardships based on geographic distance. The availability and utilization of services is affected by political, economic, socio‑ cultural and psychological forces that impact both the willingness to use services and the distribution of professionals trained and qualified to manage individuals with dual diagnoses. The complex interaction between each of these factors determines the structure, function, and capacity for innovation built into current service models.  Gives brief overview of treatment models including: outpatient/Community‑based; home‑based; school‑ based; residential; short‑term emergency residential and inpatient; and comprehensive institutional/mental hospital models.

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USA – New York – 2005

Children in Broome County with Co‑occurring Mental Health and Developmental Disability Conditions: Numbers and service gaps

D. Pryor

This is a 148-page report.  It is significant that despite different independent approaches to identification of needs, both community‑based service providers and special education school officials are consistent in estimating that about 300 county children with co‑occurring MH and DD conditions have unmet needs due to service gaps and difficulty accessing needed services. 300 children, while a relatively small and manageable number to engage and serve, represent a substantial concern in the context of the current and historical inability of the MH and MRDD service systems to be able to come together to develop service plans, practices and policies to meet the needs of these children with co‑occurring conditions. As such, they represent a significant challenge for both service systems at both local and State levels.    There is a wealth of information and data contained in this report. Most of the data‑gathering for this project was done via a series of surveys, supplemented by analyses of various existing databases. The overall study methodology was developed in consultation with the Children’s Mental Health Task Force, which also reviewed and approved drafts of the various survey instruments (the drafts were developed in consultation with small survey steering committees established by the overall Task Force).

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USA – 2004

Serving Individuals with Co‑occurring Developmental Disabilities and Mental Illnesses: Systems barriers and strategies for reform

National Association of State Mental Health Program Directors (NASMHPD)

Individuals with co‑occurring developmental disabilities and mental illnesses are a particularly vulnerable population of people served by state mental health agencies and state agencies providing developmental disabilities services. While their numbers are relatively small, these individuals pose major service delivery and funding challenges, requiring a coordinated array of treatment interventions and supports that necessitate the collaborative involvement of providers of both the public mental health system and the developmental disabilities service system. Although little data is available to describe the population of people with co‑occurring developmental disabilities and mental illnesses and the services they receive, stakeholders in both service systems agree that community‑based services often are unavailable or inadequate. Although 80 percent of individuals with developmental disabilities in state psychiatric hospitals have a co‑occurring diagnosis of mental illness, only 7 percent are served in units specializing in treatment for both conditions. This report was prepared from the proceedings of an experts’ meeting titled Co-occurring Mental Illness and Developmental Disabilities: Systems Barriers and Strategies for Reform, which was held April 11, 2003 in Alexandria, Virginia.

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USA – date ongoing

National Core Indicators

Human Services Research Institute (HSRI) & National Association of State Directors of Developmental Disability Services (NASDDDS)

National Core Indicators (NCI)™ is a voluntary effort by public developmental disabilities agencies to measure and track their own performance.  Indicators focus on: Individual outcomes; health, welfare and rights; system performance, staff stability; and family indicators

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