Intellectual and Developmental Disabilities

A Roadmap for Families and Professionals

Briana S. Nelson Goff, Nicole Piland Springer, Briana S. Nelson Goff, Nicole Piland Springer

• Publisher: Routledge
• Year: 2017
• Print ISBN: 9781138672468
• eBook ISBN: 9781317204510
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

Intellectual and Developmental Disabilities provides a unique contribution not currently available in the professional literature by addressing the experiences and perspectives of families living with or raising a child with a disability. Designed for family therapists, social workers, and other helping professionals, it provides empirically-based, practical information for working with families experiencing intellectual and developmental disabilities of a loved one. This book also provides important information for navigating the various professional systems of care with which these families interface: health care providers, early childhood intervention teams, educational systems, the legal system, and financial planners.

Part I

Foundations for Understanding Developmental, Intellectual, and Other Disabilities

1Intellectual and Developmental Disabilities

An Introduction and Overview

Brie Turns, PhD, Briana S. Nelson Goff, PhD, Marilyn Masterson, PhD, RN, Jessica D. Cless, MS, and Adam W. Cless, MS

Introduction

Brent is a shy 13-year-old who lives a relatively quiet life with his single mother, Stacy. Brent rarely ventures out in public aside from attending school, which has recently increased his anxiety. From as early as he could remember, he experienced being bullied by peers, ridiculed by teachers, and having trouble understanding why he did not have many friends. Brent often hears his mother discussing his “autism” and how he is “different” from others. He has few interactions with extended family members, and despite his diagnosis, they continually think of him as a quiet and awkward recluse who needs “better parenting” from his mother. His school counselor provides a daily check-in for Brent to ensure he understands his classwork and is not being bullied. Stacy, Brent’s mother, has been working two jobs since Brent’s father left when he was five years old. Stacy’s family members do not fully understand the extent of Brent’s condition and have recently stopped inviting Stacy and Brent to family functions. As a young man lacking the necessary support from his family and school, he has gradually descended into isolation and depression. Noticing his behavior, his school counselor recommended an autism support group for Brent to attend in order learn about his diagnosis and make friends.

Brent’s school and family life is not an isolated incident, but rather, a common experience for families and individuals diagnosed with an intellectual or developmental disability (IDD). Families with a member who has an IDD diagnosis or other special needs encounter unique issues that families with typically developing children may not experience (Werner et al., 2009). Family resources are important as family members begin to understand the diagnosis and affiliated symptoms of their loved one’s condition, both acute and chronic health problems; access community support services and resources, including medical, financial, educational, social, and other programs; and plan for the stages and challenges that are a part of coping with the demands faced by families with a member with special needs (Flaherty, Masters, & Glidden, 2000; Glidden, Billings, & Jobe, 2006). As can be seen in the previous case vignette, while greater demands on family resources and higher stress levels may be associated with having a family member with an IDD diagnosis, developing support networks and expanding resources can reduce the stress and negative effects that are often assumed to be part of the experiences of families with IDD and related special needs (Nelson Goff, High et al., 2016).

Definition of Terms

Throughout the years, a significant shift has occurred from classifying and defining mental retardationspecifically towards using the term intellectual disability (Schalock, Luckasson, & Shogren, 2007), with the former term now regarded as inappropriate and obsolete. There have been changes in the construct from a person-oriented approach to a more inclusive contextual, sociological framework (Schalock et al., 2007). Previously, the term disabilitywas used to describe an individual’s limitations or deficits; more recently, the term encompasses the individual’s ability to perform certain roles or functions within the broader social context (DePloy & Gilson, 2004). Disability is not considered a fixed personal trait or characteristic but instead addresses the interaction between an individual and his or her environment, including the resources and supports available to the individual within the social context (Chapireau, 2005; Schalock et al., 2007).

According to the World Health Organization (WHO, 2001), three components are used to classify disability; body function and structure, activity, and participation levels. These components also include how an individual interacts with his or her environment. In other words, the needs of an individual are based on how functional that person is in the context of society; if the disease or condition is limiting the functionality of that person, then the needs will be greater, increasing the likelihood the individual is experiencing difficulties with a specific disability. Disability is defined through social contexts; this social process of defining different ability levels becomes important in understanding the impact on individuals with IDD and related special needs (Chapireau, 2005).

The process of defining and classifying terminology is challenging and complex in nature. Ambiguity and uncertainty are common with defining disability, as well as placing individuals within a specific disability category or group. Each area of disability has variations in cause and functional level, as well as timing of diagnosis and changes in the needs of the individual that may occur over time and across the life span (Hallahan & Kauffman, 2000). Despite these challenges, defining and classifying the terminology associated with disability is paramount to providing universal descriptors and language that will assist individuals with developing effective strategies for creating more universal acceptance and recognition within the social context (Chapireau, 2005).

While there are a variety of conditions that can be defined by the term disability, for our purposes, we will limit our review to primarily IDD research and literature. We present the National Institutes of Health (NIH, 2010) definitions to provide a starting description of IDD for the purposes of this edited volume of work:

Intellectual disabilityrefers to a group of disorders characterized by a ­limited mental capacity and difficulty with adaptive behaviors such as managing money, schedules and routines, or social interactions. Intellectual disability originates before the age of 18 and may result from physical causes, such as autism or cerebral palsy, or from nonphysical causes, such as lack of stimulation and adult responsiveness.

(NIH, 2010, p. 1)

Developmental disabilityis a severe, long term disability that can affect cognitive ability, physical functioning, or both. These disabilities appear before age 22 and are likely to be lifelong. The term “developmental disability” encompasses intellectual disability but also includes physical disabilities. Some developmental disabilities may be solely physical, such as blindness from birth. Others involve both physical and intellectual disabilities stemming from genetic or other causes, such as Down syndrome and fetal alcohol syndrome.

(NIH, 2010, p. 1)

As mentioned previously, there is significant variation in the level of an individual’s needs based on the broad variety of what are described as special needs or disabilities. In addition, depending on the condition of the individual, there are changes that the family can come to expect as the individual transitions into different stages across the life span. While having a family member with intellectual disability and related special needs may present unique challenges, it is important to recognize that the experiences of individuals and their families often vary and depend on a variety of individual, contextual, and biopsychosocial factors that will affect the health, stability, and well-being of the individual and the family (WHO, 2001).

There are numerous intellectual disability diagnoses, as well as developmental disabilities. It was not our intent to exclude any particular groups, as each IDD area has its own unique characteristics; however, because of the limited space, it was necessary to limit the focus to some of the more common IDD categories. For this reason, we provided more detailed descriptions of three primary IDD areas: autism spectrum disorders (ASD), cerebral palsy (CP), and Down syndrome (DS). The descriptions of these areas below are not exhaustive but provide an overview of key diagnostic criteria, treatments, and similarities and differences between these three areas of IDD. In addition, we specifically focused on intellectual and developmental disabilities in this book because of the unique challenges and situations individuals and families face with these particular diagnoses. We acknowledge that there are many additional areas we could have included, as well as focus on other physical, psychological, and cognitive disabilities; however, for our purposes, it was important to narrow the focus to intellectual and developmental disabilities.

Autism Spectrum Disorders

An autism spectrum disorder (ASD) is a lifelong, childhood neurological disorder. Recent prevalence rates estimate that one in 68 children are diagnosed with ASD (Christensen et al., 2016). As indicated by the name, individuals with ASD can exhibit a spectrumof behaviors in two primary areas: social communication and social interaction, and restricted, repetitive patterns of behavior, interests, or activities (American Psychiatric Association [APA], 2013; Harstad et al., 2015). The first diagnostic criterion are often displayed by language impairments, ranging from complete lack of speech to language delays, echoed speech, or overly literal language (APA, 2013). Individuals may also have delays in social-emotional reciprocity, including inability to engage with others, deficits in nonverbal communication, such as lack of eye contact, or impairments in understanding and responding to social cues (APA, 2013). For the second criterion, restricted, repetitive patterns of behavior, interests, or activities, individuals must display at least two of the four categories: (a) stereotyped or repetitive movements, use of objects or speech, (b) insistence on sameness, strict adherence to schedules/routines, or ritualized patterns of verbal or nonverbal behavior, (c) highly restricted interests that are abnormal in intensity, and (d) high or low reactivity to sensory input, for example, excessive smelling of objects (APA, 2013). These symptoms are present from early childhood and impair the individual’s everyday functioning (APA, 2013).

Treatment for ASD

To date, there are no known medical cures for an ASD diagnosis. However, researchers and clinicians have made great advancements in identifying treatments that help individuals with ASD manage, and oftentimes, overcome many of the tendencies and symptoms associated with their diagnosis, such as behavior, sensory, and communication needs. It is out of the scope of this chapter to review all of the treatments for individuals with ASD, and we do not consider this selected treatment list exhaustive or exclusive.

Behavior and Communication.Treatment approaches designed to assist diagnosed individuals with behavior and communication deficits provide structure, direction, and organization for the child in addition to family participation (National Research Council [NRC], 2001). Applied Behavior Analysis (ABA) is one of the most widely accepted treatments and is used in schools and treatment clinics around the world (Cooper, Heron, & Heward, 2007). ABA encourages desired behaviors and discourages negative behaviors. The basic principles of ABA arose from the work of B. F. Skinner (1938), who contended that behavior was determined by a process called “selection by consequences,” meaning that individuals engage in behaviors that produce desirable outcomes and behaviors that do not produce desirable outcomes will decrease over time, or disappear completely. Various types of ABA include Discrete Trial Training, Early Intensive Behavioral Intervention, Pivotal Response Training, and Verbal Behavior Intervention (Centers for Disease Control and Prevention [CDC], 2015a). Practitioners of ABA are typically credentialed by the Behavior Analyst Certification Board (BACB) and are referred to as Board-Certified Behavior Analysts (BCBA; BACB, n.d.).

Medications.Although there are no medications that can cure ASD or even treat the main symptoms, there are a variety of medications that may be prescribed to assist individuals with related symptoms (i.e., medications for seizures, depression, improving attention, irritability). This list is not considered to be exhaustive or exclusive, but commonly prescribed medications for individuals with ASD include Selective Serotonin Re-uptake Inhibitors (SSRIs), tricyclics, psychoactive or anti-psychotic medications, stimulants, anti-anxiety medications, and anticonvulsants (National Institutes of Health [NIH], 2016).

Cerebral Palsy

Cerebral palsy (CP) is a neurodevelopmental condition caused by abnormal development or damage to the portion of the developing brain that affects muscle movement (CDC, 2015b; National Institute of Neurological Disorders and Stroke [NINDS], n.d.)....

Table of contents

• Cover
• Half-Title
• Title
• Copyright
• Contents
• About the Editors
• Preface
• Acknowledgments
• PART I: Foundations for Understanding Developmental, Intellectual, and Other Disabilities
• PART II: Perspectives, Contributions, and Lived Experiences of Individuals with IDD and Their Families on the Journey
• PART III: Navigating Professional Systems of Care: From Birth to Adolescence
• PART IV: Preparing for the Future: The Transition to Adulthood and Beyond
• Index