Promoting Desired Lifestyles Among Adults With Severe Autism and Intellectual Disabilities: Person-Centered Applications of Behavior Analysis

By Dennis H. Reid and Mary Rosswurm

Promoting Desired Lifestyles Among Adults with Severe Autism and Intellectual Disabilities: Person Centered Applications of Behavior Analysis describes how clinicians, psychologists, and mental health support staff can best fulfill these needs. Using a person-centered application of behavior analysis, the book provides procedures to facilitate clients overcoming challenging behavior, pursuing good relationships, and making good choices, while getting access to all support needed. It provides information on staff training and supervision to insure staff motivation and client happiness. Ultimately, the goal is to allow client choice and personal control over daily lifestyle.

• Reviews strategies for identifying and promoting individual happiness
• Describes how to make traditionally undesired situations more desirable
• Includes staff training and supervision requirements for promotion desired lifestyles
• Written for agency staff, supervisors, clinicians, and consultants

• Language: English
• Publisher: Academic Press
• Release date: May 12, 2023
• ISBN: 9780443134166

Dennis H. Reid

Dennis H. Reid is the founder and director of the Carolina Behavior Analysis and Support Center. His company has more than 25 years of experience providing assisted employment to persons with severe disabilities. Dr. Dennis Reid has more than 45 years of experience working with individuals with severe intellectual and developmental disabilities, including autism, in educational, residential, vocational, and community support settings. He has provided advice to human services organizations in most US states, as well as Canada, Australia, and New Zealand. He has written or co-written 15 books and more than 140 peer-reviewed journal articles and book chapters on applied behavior analysis. He earned the American Association on Intellectual and Developmental Disabilities International Research Award in 2006 and Fellowship membership in the Association for Behavior Analysis International in 2007.

Book preview

9780443134166_FC

Promoting Desired Lifestyles Among Adults With Severe Autism and Intellectual Disabilities

Person-Centered Applications of Behavior Analysis

First Edition

Dennis H. Reid

Carolina Behavior Analysis and Support Center

Mary Rosswurm

LittleStar ABA Therapy

Table of Contents

Cover image

Title page

Copyright

Preface

Section I: Introduction to promoting desired lifestyles

Chapter 1: Overview of promoting desired lifestyles among adults with severe autism and intellectual disabilities

Abstract

Purpose of promoting desired lifestyles

Intended audience

Organization of chapter contents

Some content qualifications

Chapter summary: Key points

Chapter 2: The critical roles of behavior analysis and person-centeredness

Abstract

Overview of behavior analysis

The concept and practices of person-centeredness

Synthesizing behavior analysis and person-centered practices

Summary

Chapter summary: Key points

References

Chapter 3: Laying the foundation I: Evidence-based identification of individual desires

Abstract

Current reliance on caregiver opinion

The critical role of systematic preference assessments

Chapter summary: Key points

Chapter 4: Laying the foundation II: Identifying valid indices of happiness

Abstract

Happiness as a private event

Strategies for identifying indices of happiness

Monitoring individual happiness

Special considerations with identifying and monitoring indices of happiness

Potentially problematic concerns with identifying and monitoring indices of happiness

A final note: The importance of casually monitoring for happiness

Chapter summary: Key points

Section II: Promoting day-to-day happiness

Chapter 5: Actively promoting good relationships

Abstract

The importance of good relationships

Obstacles to developing good relationships in human service agencies

Strategies for developing good relationships

Maintaining good relationships

Special considerations for promoting good relationships

Chapter summary: Key points

Chapter 6: Providing choice opportunities

Abstract

The multiple benefits of providing choice opportunities

Individualizing choice opportunities

Types of choices to provide within choice opportunities

Special considerations for incorporating frequent choice opportunities within adult service agencies

Chapter summary: Key points

Chapter 7: Ensuring access to preferences

Abstract

The relationship between choice opportunities and accessing preferences

Issues and strategies for ensuring individual access to preferences

Chapter summary: Key points

Chapter 8: Making undesirable situations more desirable

Abstract

Identifying undesirable situations

Strategies for making undesirable situations more desirable

Chapter summary: Key points

Section III: Special considerations in promoting desired lifestyles

Chapter 9: The qualified role of teaching

Abstract

Controversy over the role of teaching within adult service agencies

The focus of teaching for promoting desired lifestyles: What to teach adults with severe disabilities

How to teach adults with severe disabilities: Evidence-based strategies

Chapter summary: Key points

Chapter 10: Person-centeredness, behavior analysis, and treating challenging behavior

Abstract

Preventing challenging behavior by promoting enjoyment

Treating challenging behavior by teaching specific skills

Time-focused, priority treatment of challenging behavior

Increasing staffing to treat challenging behavior: Benefits and potential detriments

Considerations associated with stereotypy as challenging behavior

The qualified role of punishment

A final note: Behavioral resource requirements

Chapter summary: Key points

Chapter 11: Training, supervising, and motivating front-line staff

Abstract

Evidence-based staff training

Supervising staff performance

Motivating front-line staff in adult service agencies

Chapter summary: Key points

Chapter 12: Treating with dignity

Abstract

Speaking in ways to reflect dignity

Acting in ways to reflect dignity

Special considerations for treating with dignity

A final note: The golden rule

Chapter summary: Key points

Selected readings

Descriptions of behavior analysis

Developing relationships

Happiness

Making undesirable situations more desirable

Person-centered planning

Positive behavior support

Providing choice opportunities

Systematic preference assessments

Teaching

Training, supervising, and motivating staff performance

Treating challenging behavior

Treating with dignity

Index

Copyright

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Preface

Individuals with severe autism and intellectual disabilities require substantial supports and services during adulthood, which are often provided by various human service agencies. Consequently, the degree to which many of these adults experience lifestyles they desire is heavily dependent on how human service staff provide supports and services. In particular, agency staff must accurately identify or otherwise be appropriately aware of individual desires and provide supports and services in accordance with those desires. This book describes how fulfilling these critical requirements in adult service agencies can be facilitated through person-centered applications of behavior analysis.

A significant amount of research now exists that demonstrates how certain behavior analytic procedures can be applied in a person-centered manner specifically with adults with severe disabilities (despite historical contention between some proponents of person-centeredness and behavior analysis). In large part, the applications have been unheralded, especially when compared to the well-noted contributions of applied behavior analysis (ABA) with young children with autism. Nonetheless, the procedures represent tried and tested means of improving important aspects of adult quality of life.

To lay the foundation for promoting desired lifestyles among adults with severe autism and intellectual disabilities, an initial overview is presented of evidence-based procedures for accurately identifying preferences among adults whose challenges impede conventional expression of their desires. Evidence-based ways of identifying individual happiness (or indices thereof) among adults who have significant difficulty describing this emotional experience are likewise described. Subsequently, specific procedures are presented for providing supports and services commensurate with identified preferences and for promoting day-to-day happiness. Examples of procedures presented include how agency staff can establish good relationships with individual adults with severe autism and intellectual disabilities, provide meaningful choice opportunities regarding daily activities and potential lifestyle changes, ensure routine access to preferences, and teach relevant skills for allowing individuals to exert personal control over their daily lifestyles. In addition, procedures are described for making certain undesirable situations in adult service agencies more desirable for individuals, overcoming challenging behavior in a person-centered and acceptable manner, and consistently treating individual adults with appropriate dignity. Training and supervisory requirements for adult service staff to proficiently apply the procedures as they go about their job duties are also presented.

Descriptions of the aforementioned procedures are supplemented with numerous case illustrations that demonstrate how the procedures have been successfully applied in adult service agencies. The information provided is intended to assist agencies in closely aligning—or where necessary, realigning—supports and services in accordance with individual preferences. The ultimate goal is to help more adults with severe autism and intellectual disabilities routinely experience lifestyles they personally desire and achieve a truly enjoyable quality of life.

Dennis H. Reid

Mary Rosswurm

Section I

Introduction to promoting desired lifestyles

Chapter 1: Overview of promoting desired lifestyles among adults with severe autism and intellectual disabilities

Abstract

This chapter discusses the importance of promoting desired lifestyles among adults with severe autism and intellectual disabilities, and how the operations of many adult service agencies fail to promote individually desired lifestyles. A summary is then presented of selected areas of behavior analysis research that have developed strategies for identifying and promoting important features of desired lifestyles among this population. Next, an explanation is provided regarding how of application of those strategies is frequently lacking in adult service agencies, due in part to the more emphasized application of behavior analysis (ABA) with children with autism. In many ways, the latter emphasis has overshadowed contributions of behavior analysis in adult service delivery. An overview of the book's content is subsequently provided, including the focus on person-centered applications of behavior analysis to promote desired lifestyles, what is meant by severe autism and intellectual disabilities, the intended audience, and organization of chapter contents.

Keywords

Severe disabilities; Autism; Intellectual disabilities; Adults; Life quality

The overall quality of an individual's life is heavily determined by the degree to which the person experiences a desired lifestyle as an adult. The importance of adult lifestyle on quality of life becomes readily apparent when considering that adulthood typically encompasses the vast majority of one's lifespan. Relatedly, much of childhood and adolescence is spent being prepared for subsequent adult life through school and related educational activities.

As individuals enter adulthood they are generally considered to be responsible for the lifestyles they achieve. For individuals with significant and life-long challenges such as severe autism and intellectual disabilities, however, the responsibility for their lifestyles often rests largely with other people and especially staff in human service agencies. It is well established that individuals with severe autism and intellectual disabilities require significant supports and services not only during childhood and adolescence but also during adulthood. Most of those supports and services are usually provided by staff employed in human service agencies. Consequently, for many adults with severe autism and intellectual disabilities to experience lifestyles they personally desire, human service staff must provide the supports and services in a manner that successfully promotes their desired lifestyles.

It is likewise well established that the quality of supports and services provided by staff in human service agencies varies considerably both within and across different agencies. Although many factors are associated with the varying quality, underlying all the factors are two conditions that must be met to successfully promote desired lifestyles among recipients of agency services. The first condition is that agency staff must accurately identify or otherwise be appropriately aware of the personal desires of each individual with whom the staff work. Although some desires of adults with severe autism and intellectual disabilities are readily apparent and therefore easily identified by support staff, many are not. Difficulties in identifying personal desires are especially pronounced when staff work with individuals who have significant challenges communicating certain likes and dislikes in conventional ways, which is generally characteristic of adults with severe autism and intellectual disabilities.

The second condition is that staff must routinely perform their duties in a manner that effectively supports individuals in fulfilling identified desires. In this regard, human service staff are responsible for providing numerous types of supports and services. Sometimes provision of various supports and services is well aligned with what individual adults with severe autism and intellectual disabilities desire whereas at other times such provision is not so aligned.

Ensuring the two conditions necessary for human service staff to promote desired lifestyles among adults with severe autism and intellectual disabilities are met is straightforward in concept. In essence, agency staff must: (1) become knowledgeable about how to identify personal desires of each individual with whom they work as well as what to do on the job to ensure those desires are fulfilled and (2) proficiently apply that knowledge while performing day-to-day duties to ensure individuals truly experience their desired lifestyles. Despite being conceptually straightforward, though, these two critical conditions are not successfully met in many human service agencies.

For human service agencies to promote desired lifestyles among adults with severe autism and intellectual disabilities, agency staff must accurately identify personal desires of each individual they support and perform their duties in a manner that ensures each individual routinely fulfills those desires.

There are many reasons why basic conditions for promoting desired lifestyles do not exist within agencies that serve adults with severe autism and intellectual disabilities. One common reason is that agency staff do not receive adequate training in strategies for accurately identifying personal desires among adults whose communication challenges prohibit conventional expressions of their likes and dislikes. In such cases, staff essentially rely on their own opinions in terms of what they think individuals like and dislike. To illustrate, if an individual cannot readily tell staff what is desired regarding an aspect of service provision, the staff usually meet as a team and discuss what they believe the person would prefer (e.g., what type of work or leisure opportunity should be available for the individual). Although common, research has repeatedly shown that this type of opinion-based approach frequently fails to accurately identify personal preferences of individuals with severe autism and intellectual disabilities.

A similar reason is that staff do not receive effective training in how to provide various supports or services in accordance with an individual's desires even though the desires may have been appropriately identified. For example, direct support staff in an agency may be trained in a certain approach to teaching important skills to individuals that requires frequent physical contact with the individuals (e.g., using a most-to-least assistive prompting strategy to teach a task-analyzed skill). Staff are then expected to teach in that manner even though some adults with severe autism whom the staff subsequently teach are known to seriously dislike the amount of physical prompting involved in the teaching strategy. Because the staff are not trained in other teaching strategies that require less physical prompting and would likely be more desired by individual learners, staff continue with the teaching approach despite the learners’ displeasure.

Additionally, even when staff receive effective training in necessary work skills some staff fail to appropriately apply the skills when performing their duties. Problems with the performance of direct support staff are well noted within agencies serving adults with severe autism and intellectual disabilities, despite staff having received appropriate training. In some cases various staff do not exert the effort to perform certain duties (e.g., failure to provide opportunities for individuals to engage in desired recreational endeavors). In other cases, staff exert insufficient effort to perform duties completely or correctly (e.g., implementing only parts of programs designed to help individuals overcome challenging behavior). In the most extreme cases, certain staff do not report to work as scheduled or abruptly leave work without appropriate notice.

Problems with staff work performance as just exemplified are not meant as a blanket discredit of the direct support work force in adult service agencies; many front-line staff work very diligently and proficiently. Also in this regard, it is well established that when there are frequent problems with staff performance in a given agency, the source of the problems is not with the staff but with inadequate supervision and management. Nonetheless, the problems still present serious obstacles to providing supports and services necessary to promote desired lifestyles among adults with severe autism and intellectual disabilities.

A related reason why agency supports and services are not provided in accordance with individual lifestyle desires pertains to how many agencies are managed and operated on an overall basis. All human service agencies have standing operating procedures, both established by the agencies themselves and imposed by regulatory bodies (e.g., federal standards required for agencies receiving certain types of Medicaid funding). Although the procedures are important for certain purposes, compliance with the procedural requirements can interfere with the desired lifestyles of individuals in various ways.

Consider, for example, the common situation in which an agency provides residential services for adults with intellectual disabilities such as group homes along with a center-based day program for the adults who reside in the homes. The residents of the homes go to the agency's day program each weekday. This service arrangement allows the agency to minimize payroll costs for staffing the homes because the homes do not have to be staffed throughout each weekday due to the residents leaving the homes to go the day program. A given individual may seriously dislike attending the day program but is required to attend because that is the only weekday option the agency provides, and the person cannot stay at the group home during the day without staff present. With this type of service arrangement the individual is faced with a weekday lifestyle that is quite undesired.

The above examples represent just a small sample of situations in which adults with severe autism and intellectual disabilities receive supports and services in ways that impede the desirability of their day-to-day experiences. As the number and variety of such situations increase within a human service agency (additional examples will be provided throughout this book), the likelihood that recipients of the agency's supports and services will experience a desired lifestyle is decreased significantly. Consequently, to consistently promote desired lifestyles among adults with severe autism and intellectual disabilities, changes are needed in how many human service agencies provide supports and services.

The need to alter—and develop—ways of providing human services to better promote desired lifestyles among adults with severe autism and intellectual disabilities is not a new phenomenon. Such a need has been expressed by many parents, advocates, and disability professionals for decades. There has also been heightened attention directed to this need in recent years.

Increased attention regarding the need for improvements in adult service delivery has occurred due to three primary factors. First, there has been a noticeable increase in the number of children diagnosed with autism, including severe autism. Second, many children with autism who received needed services through educational and related systems have grown into adulthood. To illustrate, there are now more adults with autism in the United States than children. Third, it has become apparent that as individuals with autism become involved in the adult service system along with adults with severe intellectual disabilities in general, those services often do not effectively promote desired lifestyles as previously exemplified.

It has become increasingly apparent among parents, advocates, and disability professionals that changes are needed within aspects of the adult service sector to better promote desired lifestyles among adults with severe autism and intellectual disabilities.

One result of increased attention being directed to the need for improving adult services has been emerging research on the development of procedures for human service staff to successfully address that need. Most notably, a significant amount of research has occurred within the field of applied behavior analysis, including research on ways to identify the desires of adults with severe autism and intellectual disabilities and then provide supports and services in accordance with those desires. Application of various strategies for improving adult service provision resulting from such research has been largely unheralded to date, and especially when compared with the well-noted contributions of applied behavior analysis (ABA) with young children with autism. However, with more attention now being directed to improving adult services, the value of applying behavior-analytic principles and procedures within the adult service sector has been receiving increased recognition.

Purpose of promoting desired lifestyles

The purpose of this book is to describe how strategies derived from behavior-analytic research and application can be used by staff in human service agencies to promote desired lifestyles among adults with severe autism and intellectual disabilities. The strategies to be presented focus on person-centered applications of behavior analysis. How the particular procedures for promoting desired lifestyles represent a person-centered, behavior-analytic approach will be covered in detail in subsequent chapters. The essential point here is that the strategies represent tried and tested means of providing supports and services in ways that individual adults prefer and that enhance their lifestyle enjoyment.

In considering the purpose of this book, it is important to address what is meant by severe autism and intellectual disabilities. Severe autism refers to the most serious level of autism spectrum disorder (ASD). People with severe autism display the basic characteristics of ASD—namely, persistent deficits in social communication and narrow, repetitive patterns of behavior and apparent interests—but do so much more significantly than people with more mild or moderate ASD. Their communication and social challenges usually are exacerbated by being nonvocal or minimally vocal. Of particular relevance here, adults who have severe autism require continuous or near continuous supports and services, and daily supervision of their activities.

Severe intellectual disabilities refer to the most serious impairments in cognitive functioning that begin during the developmental period of life and continue throughout the lifespan. Historically, such disabilities were referred to as severe or profound mental retardation. People with severe intellectual disabilities do not meet the basic criteria of ASD but often display one or more of the defining characteristics noted above to varying degrees (and people with severe autism may also have severe cognitive impairments in addition to challenges specifically associated with ASD). Again for purposes here, the primary issue regarding adults with severe intellectual disabilities is that they require continuous or near continuous supports and services as well as daily supervision.

Referring to adults with severe autism and adults with severe intellectual disabilities in the same manner in terms of the amount of supports, services, and supervision they require should not be interpreted as meaning that they constitute a homogeneous group. More pointedly, each adult with severe autism and/or severe intellectual disability is a unique individual with idiosyncratic strengths and challenges as well as likes and dislikes. However, their shared need for ongoing assistance from others, which usually involves staff in human service agencies, means that special attention is warranted to ensure their supports, services, and supervision are provided in a manner that promotes their personally desired lifestyles. As will be illustrated throughout this book, successfully promoting such lifestyles requires close attention to each individual's unique characteristics whether associated with severe autism or severe intellectual disability.

For the sake of readability, hereafter reference to severe autism and intellectual disabilities will generally be made using a more concise descriptor of severe disabilities. The latter descriptor should prove less cumbersome for the reader relative to repeated reference to severe autism and intellectual disabilities. In cases where certain strategies for promoting desired lifestyles pertain to specific characteristics of severe autism versus severe intellectual disabilities (and vice versa), appropriate reference will be made to either autism or intellectual disabilities as relevant.

Promoting desired lifestyles among adults with severe disabilities requires close attention to each individual's unique characteristics and especially their personal likes and dislikes when providing necessary supports, services, and supervision.

In considering the reference to severe disabilities, attention is warranted on how people are referred to who have such a disability. Throughout this book, reference is made using people-first language. People-first language puts the person in front of the disability (e.g., referring to adults with severe disabilities in contrast to severely disabled adults). Of particular concern here, people-first language emphasizes staff in adult service agencies working with people, not the severe disability. Use of people-first language comports with a general consensus within the overall disability field regarding references to individuals who have severe disabilities.

It is also recognized, however, that there are exceptions to the preference for use of people-first language. In particular, there are members of the autism community who advocate strongly against such language in favor of disability- or identity-first language (e.g., referring to an autistic person instead of a person with autism). The importance of the latter preference and related issues with how individuals are referred to are discussed in-depth in Chapter 12 that focuses on staff in human service agencies treating adults with severe disabilities with dignity.

Another point of clarification pertains the focus on adults who have severe disabilities. For the purpose of this book, adults refer to individuals who have aged out of formal education services, which typically occurs from 18 to 21 years of age depending primarily on the state in which one lives and the education services in which one has been participating. As indicated earlier, a primary purpose of such educational services is to teach knowledge and skills to prepare children and adolescents for their future adult lives. Preparation for future life is likewise important for adults in regard to having continued learning opportunities. However, an underlying contention of this book is that the primary focus of supports and services specifically for adults with severe disabilities should be on their currently existing quality of life. In particular, supports and services should be aimed at promoting a current lifestyle that is personally desired by each recipient of those supports and services.

Intended audience

The intended audience of Promoting Desired Lifestyles consists of three primary groups. The first group is personnel who work in agencies providing supports and services for adults with severe disabilities. Such agencies include those providing residential services (e.g., group homes, supported-living sites, and center-based living), adult day services (e.g., day activity programs, supported work options, adult education opportunities), and specialty clinical services such as treatment of challenging behavior. Within this audience group the content is particularly directed to executives who oversee agency operations, professional clinicians, and supervisors of direct support or other front-line staff.

The second audience group is university and community college students who desire to work with people with severe disabilities. This group also includes higher education faculty who teach students aspiring to work in the human services sector that includes adults with severe disabilities. Finally, the third audience group is family members and advocates who desire and strive to ensure the best possible lives for adults with severe disabilities who are consumers of supports and services of various agencies.

Organization of chapter contents

This book is organized into four sections. Section I includes this introductory chapter and Chapter 2 that provides an overview of what is meant by person-centered applications of behavior analysis. Section I also includes Chapters 3 and 4 that provide a more specific foundation for the content in the remainder of the book. The latter two chapters present detailed means of identifying individual desires of adults with severe disabilities that are important for their day-to-day enjoyment as well as for making preferred lifestyle changes (Chapter 3) and identifying valid indicators of individual happiness (Chapter 4).

In Section II, the chapters focus on strategies for promoting daily enjoyment among adults with severe disabilities, which include developing good relationships among staff and the individuals they support (Chapter 5), routine provision of choice-making opportunities (Chapter 6), ensuring regular access to identified preferences (Chapter 7), and making undesired but necessary activities more desirable (Chapter 8). Next, in Section III the chapters describe special considerations for promoting desired lifestyles in certain situations, including the qualified role of teaching services (Chapter 9), person-centered applications of behavior analysis for overcoming challenging behavior (Chapter 10), supervisory responsibilities for ensuring front-line staff perform routine duties in ways that enhance desired lifestyles (Chapter 11), and providing supports and services in a manner that reflects the dignity of individual adults (Chapter 12).

Each of the forementioned chapters concludes with a summary of key points of chapter content. Key points are also highlighted within bold text boxes that are interspersed throughout each chapter. Additionally, most chapters include case illustrations of actual person-centered applications of behavior analysis within adult service agencies. Finally, Section IV of the book consists of selected readings. The readings provide background information pertaining to research that developed various strategies for promoting desired lifestyles as well as related information that expands on chapter contents for interested readers.

Some content qualifications

Provided below are several qualifications with the content of this book. The qualifications are presented to better alert readers to areas of primary focus throughout subsequent chapters. The qualifications are also presented to acknowledge certain issues pertaining to quality supports and services for adults with severe disabilities that are beyond the scope of this book.

A focus on evidence-based strategies

Strategies that human service staff apply as part of their day-to-day performance to promote desired lifestyles among adults with severe disabilities are most likely to be successful if the strategies are evidence-based. Evidence-based means that respective strategies have been shown through research and application to be effective in achieving the outcomes that the strategies are intended to achieve. In this regard, most of the research that has developed specific strategies for promoting desired lifestyles among adults with severe disabilities on a daily basis has occurred within the field of applied behavior analysis as referred to earlier. Accordingly, the focus in this book is on use of behavior-analytic strategies and especially person-centered application of those strategies.

It also warrants emphasizing that there are important aspects of quality service provision that are beyond the realm of existing research in applied behavior analysis. For example, a significant part of experiencing a desired lifestyle is ready access to quality health care. Additionally, adequate funding is necessary for agencies to provide the best possible supports and services. To date, securing adequate health care and funding of services for adults with severe disabilities has not been a focus of behavior-analytic research.

The above areas are noted as representative examples to alert readers that although the strategies presented in subsequent chapters are critical for providing quality supports and services for adults with severe disabilities, the strategies are not all inclusive. To appropriately address all necessary aspects of service provision for this important population would require multiple texts. It is readily acknowledged that this text addresses just two aspects of quality service provision: staffs’ appropriate identification of the personal desires of adults with severe disabilities and provision of various supports and services in a manner to fulfill those desires. Nevertheless, as emphasized in the introductory comments to this chapter, these two aspects of service delivery represent conditions that must be met if human service agencies are to successfully promote desired lifestyles among adults with severe disabilities.

Strategies applied by staff in human service agencies to promote desired lifestyles among adults with severe disabilities are most likely to be successful if the strategies are evidence-based.

Behavioral resource requirements

Numerous person-centered applications of behavior-analytic principles and procedures for enhancing the desirability of supports and services will be described throughout the following chapters. Many of the applications are straightforward in nature and can usually be appropriately instituted upon becoming aware of the applications. In this respect, most of the investigations that developed and validated the strategies to be presented were conducted with the involvement of human service staff in typical settings providing supports and services for adults with severe disabilities.

There are also some specific applications that are more involved. The latter applications typically require formal training in behavior analysis to carry out in the intended manner. That training usually consists of graduate work in applied behavior analysis although necessary knowledge and skills can be obtained more informally in some cases through on-the-job experience or mentoring. Accessing certain literature sources can likewise be helpful for interested parties to enhance knowledge about certain applications, much of which will be referred to in subsequent chapters as well as in the Selected Readings section at the end of the book.

Generally, however, to effectively apply certain behavior-analytic strategies it is helpful if personnel in adult service agencies have ready access to someone who has formal training and credentialing in behavior analysis, such as a Board Certified Behavior Analyst (BCBA). The BCBA could be a regular employee of a given agency or available on a consulting basis. The intent would be to secure the assistance of a BCBA or similarly trained professional to help apply more involved strategies to be discussed as part of the process of promoting desired lifestyles among adults with severe disabilities.

It should also be noted that not all BCBAs have received training or relevant experience specifically in person-centered applications of behavior analysis. Additionally, many BCBAs have training and experience only with children with special needs such as ASD, not with adults who have severe disabilities. These issues are discussed in-depth in the next chapter. Relatedly, a key part of the purpose of this book is to provide information for behavior analysts and other professionals to apply behavior-analytic principles and procedures specifically in a person-centered manner with adults who have severe disabilities.

Acknowledging qualifications with fulfilling certain lifestyle desires

In considering promotion of desired lifestyles among adults with severe disabilities by staff in human service agencies, a serious dilemma can arise for the staff. That dilemma pertains to concerns over certain desires that appear likely to result in negative consequences for an individual adult if the person is supported by staff in fulfilling those desires. Resolving that dilemma begins with acknowledging that there are qualifications with what staff can and should support, even when something may be strongly desired by a given adult who has a severe disability.

Some qualifications are basic and well accepted within the provision of human services. For example, engagement of consumers of agency services in illegal activity should not be allowed much less supported, even if the activity may be something a consumer desires (e.g., allowing an individual to take a desired item from a store without paying for the item). Similarly, engagement in activity that presents a clear and present likelihood of harm to the individual (e.g., self-injury) or others (e.g., certain types of physical aggression except when necessary for self-defense) must not be allowed or supported.

In other cases qualifications are less clear, such as those pertaining to individual engagement in desired activities in a public context that may seriously violate social mores and customs (e.g., an individual partially disrobing while sitting in a restaurant). In such situations the concern is not over the illegality of the activities or the apparent likelihood of physical harm. Instead, the concern is over the potential for negative social repercussions for the individual's actions.

The latter situations usually have to be addressed on a case-by-case basis. Recommended ways of addressing desired activities of adults with severe disabilities in situations in which engagement in the activities may have problematic repercussions will be illustrated in subsequent chapters. Many of the ways pertain to reliance on aspects of person-centered planning for determining how various behavior-analytic strategies should and should not be applied (person-centered planning is discussed in subsequent chapters and especially in Chapters 2 and 3). Considerations for addressing the situations with respect for the personal dignity of adults with severe disabilities are also most relevant (see in particular Chapter 12). The point of emphasis here is that there are qualifications with supporting adults with severe disabilities in fulfilling their personal desires, just like there are qualifications with any adult being able to experience everything that may be personally desired. Relevant qualifications should be carefully considered by concerned parties and clearly acknowledged on an individual basis, and supports and services provided with transparent reference to those qualifications.

Chapter summary: Key points

1.For human service agencies to promote desired lifestyles among adults with severe disabilities, agency staff must accurately identify personal desires of each individual adult they support and perform their duties in a manner that ensures each individual routinely fulfills those desires.

2.It has become increasingly apparent among