Running Head: INDEPENDENT LIVING INTRODUCTION 1

Intellectual and developmental disabilities (IDD) is a broad term used to describe a multitude of

lifelong disabilities that negatively affect the individual in the areas of intellectual and/or physical

development (NICHD, 2012). Common Individuals with Disabilities Education Act (IDEA) categories

included under the IDD term are autism and intellectual disabilities (ID). ID is defined as having

impacting deficits in both intellectual functioning and adaptive behaviors (American Psychiatric

Association, 2013). Current studies estimate that around 1% of the world population is affected by ID

(McKenzie, Milton, Smith, & Ouellette-Kuntz, 2016). Autism is defined as a developmental disability that

affects the individual’s social abilities, including deficits in communication, executive functioning, and

sensory processing (American Psychiatric Association, 2013). Current international studies suggest that

just over 1% of the world population is diagnosed with autism (Özerk, 2016). Both ID and autism have

recently had changes to their diagnostic criteria and definitions that may affect future diagnosis (Kulage,

Smaldone, & Cohn, 2014; Social Security Administration, 2013). Individuals with IDD have some of the

worst reported outcomes through transition and into adulthood (Lipscomb et al., 2017).

Community-Based Services

In the past 40 years, there has been an ongoing movement of deinstitutionalization in favor of

more community-based services for people with disabilities in the United States (Buell, 2003). This

movement has been supported heavily through legislation, such as IDEA, Americans with Disabilities Act,

and the Higher Education Opportunities Act. This, along with an increasing number of aging individuals

with IDD (Hogg, Lucchino, Wang, & Janicki, 2001; Patja, Iivanainen, Vesala, Oksanen, & Ruoppila, 2000),

has resulted in a need for special education services and related services for an older population within

a community setting.

Quality of Life in IDD

As the number of people with IDD living within their communities has increased, the idea and

importance of the quality of life of people with IDD has become a topic of research (Brown, Hatton, &
INDEPENDENT LIVING INTRODUCTION 2

Emerson, 2013; Burgess & Gutstein, 2007). Quality of life is a social construct used to describe the

satisfaction derived from various aspects of an individual’s life, or more simply as a descriptor for what it

means to have a good life (Bishop-Fitzpatrick et al., 2016). Quality of life has been used to measure

satisfaction across a variety of people with a variety disabilities, disorders, or diseases. Schalock and

colleagues (2005) validated a list of 24 indicators of quality of life that fit into eight domains. The

domains are emotional well-being, interpersonal relations, material well-being, personal development,

physical well-being, self-determination, social inclusion, and rights. There is some disagreement on the

number of factors; some researchers add, subtract, or combine factors and indicators from Schalock and

his colleagues (Brown et al., 2013; Moss, Mandy, & Howlin, 2017). There is also debate on the

importance or the predictive nature of particular indicators over other indicators, but the core domains

are generally accepted (Burgess & Gutstein, 2007). An overarching theme of autonomy over one’s

choices in life is evident throughout the literature as an integral measure of an individual’s quality of life

(Kostikj-Ivanovikj & Chichevska-Jovanova, 2016; Moro, Savage, & Gehlert, 2017; Simões & Santos, 2016).

Some of the domains are fixed or externally controlled (i.e. rights, financial status, or health),

but many others are areas that could be influenced through targeted intervention. As the focus on

transition and community-based services has increased, a large amount of research and education has

centered around employment as a pathway to increasing the quality of life for individuals with

intellectual disabilities (Cawthon, Wendel, Bond, & Garberoglio, 2016; Dague, 2012; McConnell, Martin,

& Hennessey, 2015). Social inclusion (Hall, 2017; Qian, Tichá, Larson, Stancliffe, & Wuorio, 2015), self-

regulation (Eisenman, 2007; Shogren, Palmer, Wehmeyer, Williams-Diehm, & Little, 2012; Shogren &

Shaw, 2016), and education (Thoma et al., 2011) are other areas of intervention with the goal of

increasing overall quality of life for individuals with IDD.

Independent Living
INDEPENDENT LIVING INTRODUCTION 3

With much of the focus of intervention research in this area being on employment skills in

preparing to transition out of secondary education (Rogan, Updike, Chesterfield, & Savage, 2014; Test et

al., 2009; Winsor & Butterworth, 2008), only a small amount of time preparing for adulthood during

secondary transitional education is focused on improving independent living skill (Haber et al., 2016).

Independent living is often defined by the skills that make up the construct including: personal self-care,

personal management, activities of daily living, financial management, and management of health needs

(Rowe et al., 2015). Individuals with IDD have deficits in independent living that grow in discrepancy

from the skills of their typically-developing peers as they age (Belva & Matson, 2013). As most of the

intervention and teaching of skills related to independent living happens in adulthood, the discrepancies

are already impacting multiple areas, including employability. The discrepancies make it a necessity for

these individuals with IDD to be dependent on either their family (often aging parents) or service

providers (Boehm, Carter, & Taylor, 2015; Esbensen, Bishop, Seltzer, Greenberg, & Taylor, 2010),

meaning less autonomy.

Various interventions have been used to teach independent living skills to individuals with IDD

across the lifespan. A recent meta-analysis of single-case studies (Ninci et al., 2015) identified four

common intervention method categories that the studies fit into: audio cueing, behavioral in vivo, visual

cueing, and video modeling. This meta-analysis also found that a majority of included studies were with

adults while the greatest effects were found in elementary-aged individuals suggesting the need for

earlier intervention of the skills included within independent living.

The purpose of this review is to identify the interventions used to teach independent living skills

to adults with IDD with the intent to establish potential interventions to use with secondary students

with IDD to increase skills in the areas of independent living prior to transitioning out of secondary

education placements. The research questions for this study are as follows:
INDEPENDENT LIVING INTRODUCTION 4

Question 1: What are the interventions being used to teach independent living skills to students

with IDD in secondary education settings?

Question 2: Which of these interventions have been evaluated through experimental methods?

Question 3: What educational methodology is being used within the experimental approaches?

Question 4: To what extent are these studies generalizable?

Question 5: What are the effect sizes of the various identified interventions?
INDEPENDENT LIVING INTRODUCTION 5

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