Supporting Individuals with Intellectual Disabilities & Mental Illness

Reviewed by Tracey Smith, Clinical Lecturer, James Madison University on 5/11/22

Comprehensiveness rating: 5 see less

The book begins with a historical look at the experience of someone with intellectual disability in society as well as society's response and attempt to "deal" with this population. Many topics are addressed in a holistic way, considering physical, psychosocial and mental challenges.

Content Accuracy rating: 5

I did not see any glaring discrepancies. The only thing that jumped out at me was the reference to the DM5 criteria for mental illness diagnosis. This is not used very much anymore in the mainstream.

Relevance/Longevity rating: 5

In our current society, many people are challenging their previous held beliefs about gender, race and identity. I feel that presenting the different experiences of those with intellectual disability should be a part of the conversation as well.

Clarity rating: 5

The chapters were easy to understand and were organized in a way that made sense. The summary/conclusion additions at the end of each chapter were helpful as were the links to additional information for further exploration.

Consistency rating: 5

There was nothing within the reading or structure of the book that distracted me with inconsistency.

Modularity rating: 5

See above regarding clarity.

Organization/Structure/Flow rating: 5

See above regarding clarity.

Interface rating: 5

I did not notice any issues.

Grammatical Errors rating: 5

I did not notice any issues.

Cultural Relevance rating: 5

The subject was presented in such a way as to challenge the reader to consider previous ways of thinking regarding this population. Use of terminology and language is relatable.

Reviewed by Elizabeth Wheeler, Associate Professor of English, University of Oregon on 7/3/20

Comprehensiveness rating: 3 see less

Most countries lack sufficient education and training for caregivers of adults with disabilities, so this textbook fills a real need. The specific topic of assisting people with a dual diagnosis of intellectual disability and mental illness is useful. Chapters contain good tips on matters such as pain behavior and task analysis. There could be more discussion of ways to implement person-centered planning. There is no index or glossary.

Although the textbook claims to draw from the field of disability studies, it fails to do so, which means the book also fails to include the voices and insights of the people who experience intellectual disabilities and mental illnesses. Despite its calls for equality and respect, the textbook needs to do a better job of treating people with intellectual disabilities as experts on their own lives. For instance, it gives short shrift to the concept of self-advocacy and the self-advocacy movement, using the term “self-advocates” without defining it. It only quotes people with disabilities anonymously, while medical and academic experts receive full credit. It should draw definitions of intellectual disabilities and mental illness from the people who experience them, along with the clinical definitions from the DSM-5 and the ICD-11.

The short final chapter on sexuality dwells almost exclusively on people with intellectual disabilities as objects or perpetrators of sexual abuse. The chapter needs additional material to inform caregivers about best practices for informing and supporting adults with intellectual disabilities in healthy sexual expression, including diverse gender and sexual identities.

Content Accuracy rating: 3

Authors have appropriate awareness of structural inequities affecting people with intellectual disabilities, such as lesser access to health care, higher rates of abuse, and misuse of psychiatric medications to manage behavior.

In the sections on disability history, the first 3 chapters present sweeping and unscholarly generalizations. These sections should cite disability historians, just as other sections cite clinical and social work research.

The text reproduces some old biases. For instance, the authors should tread more lightly in describing Borderline Personality Disorder, because of the strong stigmas against it. Additionally, the book describes Applied Behavioral Analysis as if it were a universally accepted method of countering challenging behaviors rather than a flashpoint of controversy. Applied Behavioral Analysis is most commonly used with people on the autism spectrum, and many autistic self-advocates argue that ABA is a form of abuse. See the following sources:

Elizabeth Devita-Raeburn, “Is the Most Common Therapy for Autism Cruel?”
https://www.theatlantic.com/health/archive/2016/08/aba-autism-controversy/495272/

Melanie Yergeau, Authoring Autism: On Rhetoric and Neurological Queerness (Duke University Press, 2018)

Bascom, Julia. “Quiet Hands.” Just Stimming, 5 October 2011. https://juststimming.wordpress.com/2011/10/05/quiet-hands/

Relevance/Longevity rating: 4

The textbook reflects current best practices in strengths-based assessment and speaking about disabilities respectfully. The editors should update an outdated reference from 1967 on the harm of using the R-word.

Clarity rating: 5

The book is written with admirable clarity and thorough explanation of concepts. It should be accessible to most family caregivers as well as professional direct service providers. The text boxes of “Key Points for Caregivers” helpfully summarize previous discussions.

Consistency rating: 5

Each chapter uses the same useful format of definitions, suggestions, text boxes, summary, and references.

Modularity rating: 5

Written by an authority in that field, each chapter covers a different topic that could be read or assigned on its own. Each chapter ends with its own self-contained list of references.

Organization/Structure/Flow rating: 5

Good division of chapters into shorter sections.

Interface rating: 5

The interface is clear and simple. Unable to tell from the pdf if the headers and lists are accessible to screen readers for visually impaired people.

Grammatical Errors rating: 5

No grammatical errors. I found only one spelling error: “antidespressant” on p. 28.

Cultural Relevance rating: 2

Please see remarks on bias under “Comprehensiveness” and “Accuracy.”

Comments

No.

Reviewed by Natalie Perkins, Assistant Professor, Colorado State University on 10/21/19

Comprehensiveness rating: 4 see less

The text provides an overview of how to address common problems in individuals with disabilities and those with mental health concerns. There are some broad assumptions and it may be best to clarify that they are generalizations. For example, when discussing pain it states to provide medication for 24 hours and then if improved, assume that the cause was pain. However, there is also scientific proof that emotional pain can manifest as physical pain. Following the recommended technique may cause emotional pain to go unrecognized.

Content Accuracy rating: 4

There are some areas in the book that may be perceived a possibly bias towards heterosexual individuals. The chapter on sexuality does not provide information on how to discuss sexuality, sex, gender, and other considerations. Other chapters provide a good overview of how to address concerns.

Relevance/Longevity rating: 4

The content is relevant and for the most part up to date. I would be helpful to have current examples that relate to issues in society. This can be difficult to continue to update, however it would be helpful to have.

Clarity rating: 5

The book is written for caregivers and is appropriately directed towards their understanding. It does not use medical jargon and is easy to understand.

Consistency rating: 5

The text uses the same language throughout and each chapter follows the same format. It would be helpful to have a glossary of terms.

Modularity rating: 5

This book is visually appealing and easy to read in difficult formats (online or mobile). It has highlighted sections for key talking points that helps to break down the topic and provides quick relevant details. The various sections of the book would be useful for caregivers with limited experience in working with individuals with disabilities or mental health concerns.

Organization/Structure/Flow rating: 5

The chapters are easy to access and easy to read. The format is logical and overall well-written and edited.

Interface rating: 5

The chapters can be accessed by a tab and there is an arrow at the end of each chapter to return the reader to the menu. There are no interface issues. Images, and charts are clear and easy to read.

Grammatical Errors rating: 5

Well written and edited.

Cultural Relevance rating: 4

The text is appropriate, it could use more diverse terms and include other cultural considerations.

Comments

This book is most beneficial for caregivers or individuals who are considering working as caregivers or respite support caregiver. It has relevant information that would benefit caregivers in navigating discussions. It does not have case study scenarios which may be helpful when learning how to have conversations or broach difficult subject matter. The title can be misleading, as it does not always discuss duel diagnosed individuals, as much as one or the other.

Reviewed by Hyacinth McKee, Assistant Professor of Social Work, SUNO- Southern University at New Orleans on 4/15/19

Comprehensiveness rating: 4 see less

Dr. Melrose's textbook serves as a handbook of guidance to direct support professionals on best practices on working with individuals with disabilities and mental health conditions. It covers the basic core principles, historical perspective, definitions of the types of disabilities/mental health conditions and provides day-to-day strategies to address the needs of these populations in a easy to use format.

Content Accuracy rating: 5

The text appears to be unbiased in the use of its description of individuals with disabilities and it promotes "person first language". It serves as an introduction to the framework of true acceptance of persons with all abilities by promoting strategies that encompasses inclusive practices.

Relevance/Longevity rating: 4

This text can serve as a manual to introduce professionals to the field of disabilities and mental health. Some of the research in the manual appears to be close to 10 years of expiration in terms of its date of publication. Therefore, some of the statistical data will need to be updated periodically overtime in order to maintain its relevance. More statistical data on the U.S. population will be needed, should this book be used in the United States.

Clarity rating: 3

Although the jargon seems typical as it reflects some "everyday" terminology, the text would benefit from a full glossary of terms so that the reader can reference. Additionally, should the text serve as a manual/handbook, perhaps an appendix with samples of forms (i.e. incident reports, progress notes, medication log, etc.) should be included so that the reader can practice applying the strategies provided.

Consistency rating: 5

The terminology is consistent with current appropriate language used to describe this population. It is free from language that is discriminatory or stigmatizing. The author does an excellent job with setting the framework of the text by providing an historical context regarding this population and how the historical language that was use to describe this population was not best practice. The author makes a clear point that society's view of this population and its historical description of this population served as a means to perpetuate inequitable practices. By charging the reader to be mindful of his/her own use of language in the introduction of book, sets the tone upfront for the entire book, as it to be a "person first" text.

Modularity rating: 5

The modularity of text was most impressive. As a professor, I found the text to be "user-friendly" as the sections of the book and subheadings were easily readable. I was most impressed with the section on the competencies expected of support workers and thought that this information should be in the introduction. As a former direct support worker, I thought the text did an excellent job as it was descriptive; however, more visual aids would be beneficial. This text can serve as a good supplemental text for a course on Intellectual Disabilities and Neurodevelopmental disorders.

Organization/Structure/Flow rating: 4

The topics in the text were clear. The chapter on Behavior that Hurts-Applied Behavioral and Functional Behavioral Analysis can be used in a foundation social work or psychology class. A chapter on self-advocacy would have been beneficial (i.e. how to teach/support an individual in learning skills of self advocacy).

Interface rating: 3

This book is user friendly and visually appealing. The audio to print option was most impressive because it showed that the author's attempt at being sensitive and mindful to all abilities who may be reading this text. The book would have benefited from more visual aids and perhaps some case samples, case studies and or stories of self-advocacy (or family members). This would make the information in the text more relative.

Grammatical Errors rating: 5

I did not locate any grammatical errors. It appears that this book was written by a British author as the word behavior is written as behaviour.

Cultural Relevance rating: 2

The author did not provide information on ethnicity/culture in the text. More information is needed in this area, in particular as it relates to African-american, Hispanic/Latino, and Asian cultures. Including information relevant to these cultures will better assist the direct support professional on service delivery. For example, in the African-American culture, some individuals are reluctant to utilize services for fear of stigmatization. In the Asian as well as Hispanic/Latino culture, it takes time to build a level of trust as their cultures are family- centric" and are often reluctant to receive services if they do not feel that they can trust their service provider. So perhaps more techniques on how to build rapport with these cultures should be included (i.e. empathetic listening, cultural humility, etc.). The author should also consider offering the text in other languages.

Comments

As a parent and family advocate of individuals with disabilities I found this book to be very empathetic to the needs of this population. As a professor and licensed clinical social worker, I found that this book could serve as a supplemental text for a course on Intellectual/Developmental Disabilities and Neurodevelopmental Disorders. I also believe that some of the content of the book can be referenced for an applied, experiential social work course (i.e. field education, internship). This text will be considered for social work course implementation.

Reviewed by Shayla Betts, Visiting Assistant Professor of Social Work, Longwood University on 3/4/19

Comprehensiveness rating: 4 see less

The book has strong comprehensiveness although, to me, the title of the book was somewhat misleading. Based on the title, I was under the impression that the text would reference individuals with dual diagnoses of intellectual disability and a mental health diagnosis. However, the focus of the book seemed to center more directly on persons with intellectual disability with a chapter that focused on the comorbidity of intellectual disability and mental health diagnoses. Each chapter was comprehensive and thoroughly addressed and I like how the authors provide historical context for many of the chapters.

Content Accuracy rating: 5

The content is accurate and written in a client-centered, person-first framework with inclusive recommendations founded in current best practice research.

Relevance/Longevity rating: 5

The topics discussed in the book are relevant and will likely remain relevant for the next several years.

Clarity rating: 5

One of the characteristics I like best about the book is the clarity of the language used. The book is easy to read and to understand by academics and non-academics alike. Terms and concepts are well-explained and the content is easy to follow making this a useful resource for the book's target audiences.

Consistency rating: 5

The book is consistent in its terminology, formatting, content, and purpose. The book is well-structured and provides examples and resources throughout each chapter. The consistency makes it easier for the reader to access and comprehend the information being provided.

Modularity rating: 5

The transitions of topics and pacing of the book could easily be incorporated into a course. The chapters and subsections can be read out of order or referenced individually without jeopardizing the quality of the content.

Organization/Structure/Flow rating: 5

The book is well organized and easy to follow. Chapters can be read and understood out of sequence without needing the previous chapters' information to aid in comprehension. Each chapter is strong in its content area while being succinct as a whole.

Interface rating: 5

The text was easy to navigate and the tables and charts appeared appropriately.

Grammatical Errors rating: 5

Grammar and writing are not issues within the content of this book.

Cultural Relevance rating: 4

The book was not culturally insensitive or offensive. However, there were opportunities to potentially address how intellectual disability is seen among diverse cultures and the prevalence of such disorders in a variety of racial or ethnic backgrounds. It may be beneficial to include a chapter on cultural values and beliefs as it relates to intellectual disability in future editions

Comments

I recommend this book to caregivers, direct care providers, and academics. While the integration of mental health and intellectual disability was not as clear throughout the book, it intersection of mental health and intellectual disability was well-addressed in the chapter dedicated to this topic. Many important topics were covered adequately throughout the text making this a very useful and helpful resource to all who read it.

Reviewed by Tammy Jorgensen Smith, Associate Professor, University of South Florida on 3/27/18

Comprehensiveness rating: 4 see less

The textbook presents information very succinctly. It covers a lot of important material that is often overlooked or not included in this type of resource such as sexuality, self-injury, and pain assessment. Some areas could have been expanded to include more comprehensive information. For example, in the chapter on mental health, only one type of personality disorder is summarized. The content is user-friendly and presented in a manner that will not overwhelm readers making it more likely to be used and adopted within training curriculum.

Content Accuracy rating: 5

The textbook is very forward-thinking with a focus on best practices and concepts of full inclusion, people first language, person-centered team approaches to care, advocacy, and tailored/ individualized services and supports. The information included is accurate and relevant based on the current literature pertaining to support services for individuals with intellectual disabilities.

Relevance/Longevity rating: 5

The content of the textbook is highly relevant and will provide a lasting and much needed resource for caregivers and direct support professionals.

Clarity rating: 5

The content is well-written and user-friendly which will appeal to the target audience of caregivers and support personnel. I like that the author provides explanations and examples of how to apply recommended strategies. I also appreciate the key points for caregivers that are included throughout the text.

Consistency rating: 5

The terminology and framework of the book was consistent throughout. Much focus was placed on "old" and "new" terminology and changes in language and terminology from words and phrases that are demeaning to those that are empowering to individuals.

Modularity rating: 5

The textbook is easy to navigate and laid out by chapter with access to a linked table of contents on each page.

Organization/Structure/Flow rating: 5

The chapters are concise and flow in a manner that makes sense to the reader.

Interface rating: 5

I had no issues navigating the textbook. I like that it is offered in multiple formats and that the author includes audio links to each of the key points for caregivers. For those accessing the book in print format, QR codes are provided for easy access to the audio clips.

Grammatical Errors rating: 5

No grammatical errors or typos were identified while reviewing this textbook.

Cultural Relevance rating: 4

Although the textbook did not specify differences in care giving and supports based on cultural characteristics of race, ethnicity, and experiences, it does promote a person-centered, individualize approach to care giving that promotes assessment and consideration of these factors. Much emphasis is placed on the culture of disability and the importance of ethical treatment and advocacy for this undeserved and marginalized group of people. Empowering language is emphasized throughout the text.

Comments

I highly recommend this textbook as a valuable resource for caregivers, direct support professionals, and family members of individuals with intellectual disabilities. I appreciate the presentation of the intersection of intellectual disabilities and mental illness along with the inclusion of common coexisting conditions and elevated risk factors for health conditions. The textbook provides some common issues related to care giving for this population including lack of available supports and services, lack of training for caregivers and providers, and high turnover in direct care staff. Information was also presented on the above average incidence of abuse and over-medication within this population. Other important topics that are covered include informed choice, self-determination, proper documentation, linking to available resources, aging, and sexuality. Strategies are provided to assess and treat pain, to teach individuals to develop appropriate boundaries, and to modify self-injurious and aggressive behaviors. This is a much needed resource that will be valuable to a variety of stakeholders in the field of intellectual disabilities. I enjoyed reviewing the textbook!

Reviewed by Janet Finlayson, Dr, Glasgow Caledonian University on 2/1/18

Comprehensiveness rating: 5 see less

This textbook is a comprehensive resource internationally for unpaid caregivers (relatives of people with intellectual disabilities) as well as paid caregivers (care/support staff who work in supported living, residential, vocational and recreational services), as it sets out the values and quality standard principles they can expect for their relative with intellectual disabilities from these services and supports. It is a useful resource for academic students, as the content is based on a comprehensive list of references (current evidence). Training officers/departments within services will also benefit from its content as training material for their care and support staff.

The comprehensive information, which covers overall health and wellbeing (not just mental ill health), is well laid out, in terms of chapter order and ease of reading. Occasionally important points are merely mentioned (e.g. the recommendation that people with intellectual disabilities receive annual health check ups with a physician is only mentioned in the 'Pain' chapter 5, page 72, when it actually warrants a dedicated section in a different chapter), but these important points have been included all the same.

It is good to see such a valuable resource available as an open access textbook, because it is about people with intellectual disabilities AND mental illness. Such textbooks on dual-diagnosis are hard to find gems of resource.

Content Accuracy rating: 5

The textbook is accurate, based on best available current evidence, and provides a valuable resource on e.g. practical communication tools suitable for using with people with intellectual disabilities and mental illness (who often experience communication difficulties and require the use of communication aids).

Relevance/Longevity rating: 5

The book is relevant with expected longevity, although the scan codes and links to supporting audio material will need to be checked/updated regularly to ensure they are in working order.

Clarity rating: 5

The book is written concisely and clearly, and because it explains key terminology and the historical perspectives which have led to the present day, everything is explained to the reader in an easy to understand manner. It is written in such a way that it will have just as much appeal to an expert in the field than it will to a novice.

Consistency rating: 5

The book is consistently written and presented, with the extremely useful inclusion of summaries (conclusions) and 'key points for caregivers' at the end of each chapter. Each chapter has been written/edited by a different author but the flow of writing is consistent throughout, as though written by the same one author.

Modularity rating: 5

If rated, the book would be awarded five gold stars for modularity. Each chapter follows the same layout (with conclusion/summary and key points), and is separate/distinct enough to be read in isolation, or at the same time as other chapters. The use of optional supplementary audio clips is a real bonus, as those who have time to listen to them will find them extremely useful, and those who feel they don't have as much time will still benefit from the comprehensive information provided within the textbook alone.

Organization/Structure/Flow rating: 5

The topics are presented in a logical and clear fashion. On reading the content list at the beginning, it may at first appear as though intellectual disabilities and mental illness are being discussed separately, but it does become clear on reading the chapters, that this is not the case. This textbook and all of its chapters is relevant to caring for/supporting people with intellectual disabilities and mental illness (dual diagnosis).

Interface rating: 5

The book's interface is problem -free.

Grammatical Errors rating: 5

No grammatical errors were spotted when reading this book.

Cultural Relevance rating: 5

The book is American but relevant for readers internationally. The book's subject is people with intellectual disabilities and mental illness, and great sensitivity to the important values and principles for caring for/supporting people with intellectual disabilities therefore, is apparent from the outset - this book actually raises awareness of their importance to the reader.