Family Role in the Development of Self-Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review

2021 ◽  
Vol 59 (4) ◽  
pp. 315-334
Author(s):  
Evan E. Dean ◽  
Anne V. Kirby ◽  
Mayumi Hagiwara ◽  
Karrie A. Shogren ◽  
Deniz Tekin Ersan ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Scoping Review ◽  
Self Determination ◽  
Future Research ◽  
Knowledge Gap ◽  
Intellectual And Developmental Disabilities ◽  
Family Role ◽  
Research And Practice ◽  
Family Perspectives ◽  
Home Context

Abstract The development of self-determination is promoted by supportive contexts during adolescence; families are a key part of this context. In adolescent populations, research suggests families can support self-determination in a number of ways, yet less is known about how self-determination is promoted within families of youth with intellectual and developmental disabilities (IDD). To address this knowledge gap, we conducted a scoping review to examine the existing evidence pertaining to the role families of youth with IDD play in supporting the development of self-determination. A review of 24 publications revealed that existing research has focused on understanding family perspectives on self-determination, but there is a lack of studies investigating how families provide supports for self-determination in the home context for youth with IDD. Additionally, little intervention work has focused on supporting families to promote self-determination. Based on the findings, implications for future research and practice are provided.

A Review of the Benefits and Barriers to Postsecondary Education for Students With Intellectual and Developmental Disabilities

2021 ◽  
pp. 002246692110133
Author(s):  
Chung Eun Lee ◽  
Julie Lounds Taylor
Keyword(s):  
Developmental Disabilities ◽  
Postsecondary Education ◽  
Scoping Review ◽  
Reference Lists ◽  
Web Of Science ◽  
Educational Programs ◽  
Intellectual And Developmental Disabilities ◽  
Inclusion Criteria ◽  
Research And Practice ◽  
Program Engagement

Postsecondary educational programs (PSEs) are increasingly an option for students with intellectual and developmental disabilities (IDD). This scoping review synthesized research to understand the impacts of these programs for students with IDD and for campus, and barriers to these programs across stages of engagement (exploration, participation, completion). Studies were identified by searching PubMed, PsycINFO, ERIC, and Web of Science databases and reference lists of included articles. Twenty-one studies met inclusion criteria. Multiple benefits were identified for students with IDD and campus. Persistent barriers across all stages of program engagement included lack of funding and lack of collaboration. Barriers specific to stages included lack of knowledge, options, individualized support, integration into campus, and transportation. Implications for research and practice are discussed.

The Perceptions of Professionals Toward Siblings of Individuals With Intellectual and Developmental Disabilities

2017 ◽  
Vol 55 (2) ◽  
pp. 72-83 ◽  
Author(s):  
Meghan M. Burke ◽  
Chung eun Lee ◽  
Catherine K. Arnold ◽  
Aleksa Owen
Keyword(s):  
Developmental Disabilities ◽  
Service Delivery ◽  
Delivery System ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Service Delivery System ◽  
Web Based ◽  
Research And Practice ◽  
Positive Experiences ◽  
Sibling Involvement

Abstract Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.

In Their Own Words: Perceptions and Experiences of Bullying Among Individuals With Intellectual and Developmental Disabilities

2019 ◽  
Vol 57 (1) ◽  
pp. 66-74 ◽  
Author(s):  
Megan M. Griffin ◽  
Marisa H. Fisher ◽  
Laurel A. Lane ◽  
Lindsay Morin
Keyword(s):  
Developmental Disabilities ◽  
Qualitative Analysis ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Research And Practice ◽  
Traditional Definition ◽  
High Incidence

Abstract Despite the high incidence of bullying among people with intellectual and developmental disabilities (IDD), little research has been conducted with people with IDD as participants reporting their own perceptions and experiences of bullying. To address this shortcoming, we interviewed 18 adults with IDD regarding these issues. Four major themes emerged from our qualitative analysis of the transcribed interviews: (a) bullying is hurtful, (b) why people bully, (c) bullying takes many forms, and (d) bullying can happen anywhere. Though participants' definitions of bullying and explanations for why people bully aligned well with traditional understandings, several reported incidents of bullying were discrepant from the traditional definition, including incidents of abuse and rude behavior. Implications for future research and practice are discussed.

Inclusion Is Transformative: Self-Advocacy Leaders' Perspectives on Board Inclusion and Tokenism

Inclusion ◽  
2016 ◽  
Vol 4 (3) ◽  
pp. 183-190 ◽  
Author(s):  
Mark G. Friedman ◽  
Ruthie-Marie Beckwith ◽  
James W. Conroy
Keyword(s):  
Leadership Development ◽  
Developmental Disabilities ◽  
Policy Making ◽  
Research Study ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Inclusive Leadership ◽  
Self Advocacy ◽  
Research And Practice ◽  
Marginalized Groups

Abstract People with intellectual and developmental disabilities have begun to experience increased participation and inclusion in boards and policy-making bodies. They have, however, faced challenges in gaining full acceptance similar to those experienced by other marginalized groups. To date, the experience of board participation by individuals with intellectual and developmental disabilities has typically been examined through the narrow lens of leadership development. The purpose of this study, which is part of the National Beyond Tokenism Research Study, was to seek the viewpoints of experienced leaders within the self-advocacy movement regarding the prevalence of tokenism and practices they have found effective for inclusive leadership. Implications for future research and practice are discussed.

Cost-benefit analyses of employment services for individuals with intellectual and developmental disabilities: A scoping review

2021 ◽  
pp. 1-14
Author(s):  
Josh Taylor ◽  
Lauren Avellone ◽  
Rob Cimera ◽  
Valerie Brooke ◽  
Aliza Lambert ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Scoping Review ◽  
Grey Literature ◽  
Cost Benefit ◽  
Employment Outcomes ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Negative Effects ◽  
Positive Effects ◽  
The Cost

BACKGROUND: Understanding the cost-benefit of vocational rehabilitation services is critical to improve competitive integrated employment outcomes for individuals with intellectual and developmental disabilities (IDD). OBJECTIVE: The purpose of this scoping review was to analyze and synthesize micro and macroeconomic analyses of various types of vocational services which promote the employment outcomes of individuals with IDD. METHODS: This scoping review searched peer-reviewed and grey literature sources published between 2000 and 2020, examining both micro and macroeconomic analyses. RESULTS: A total of 26 studies met inclusion criteria. The majority of studies reported positive effects for the cost-benefit of integrated service approaches such as supported and customized employment. Conversely, our findings show no cost-benefit for sheltered workshops, and in some cases, negative effects. CONCLUSION: Limitations to the included studies as well as implications and recommendations for practice, policy, and future research are discussed.

Postsecondary Education Programs on College Campuses Supporting Adults With Intellectual and Developmental Disabilities in the Literature: A Scoping Review

2020 ◽  
Vol 43 (4) ◽  
pp. 195-208
Author(s):  
Mary L. Whirley ◽  
Carly B. Gilson ◽  
Christina M. Gushanas
Keyword(s):  
Developmental Disabilities ◽  
Postsecondary Education ◽  
Scoping Review ◽  
College Campuses ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Inclusion Criteria ◽  
Online Databases ◽  
Increasing Trend ◽  
Education Opportunity

Postsecondary education (PSE) programs for young adults with intellectual and developmental disabilities (IDDs) have increased steadily since the passage of the Higher Education Opportunity Act. The purpose of this scoping review was to explore a decade of research pertaining to PSE programs for students with IDDs on college campuses. Online databases were examined. Hand searches were completed to identify studies released from 2008 to 2018 about PSE programs offered on college campuses. Sixty-eight studies met inclusion criteria: 43 peer-reviewed articles across 26 interdisciplinary journals and 25 dissertations across 20 universities. This review identified an increasing trend in research on PSE programs on college campuses. Suggestions for future research and implications for stakeholders were discussed.

Exploring Patterns of Advocacy and Well-Being of Parents of Children With Intellectual and Developmental Disabilities

2021 ◽  
Vol 59 (6) ◽  
pp. 459-471
Author(s):  
Kristina Rios ◽  
Janeth Aleman-Tovar ◽  
Meghan Burke
Keyword(s):  
Quality Of Life ◽  
Developmental Disabilities ◽  
Well Being ◽  
Marital Relationships ◽  
Future Research ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Structured Interviews ◽  
Research And Practice

Abstract Advocacy is often an expectation for parents of children with intellectual and developmental disabilities (IDD). However, little is known about how advocacy may impact parent well-being, including stress, family dynamics, and marital relationships. By exploring the effects of advocacy on well-being, interventions can be implemented to support both the advocacy and well-being of parents of children with IDD. To this end, the purpose of the study was to explore the pattern between positive and negative advocacy experiences of parents of children with IDD and the well-being of parents, families, and marriages. Semi-structured interviews were conducted with 38 parents of children with IDD. Regardless of the nature (i.e., positive, or negative) of the advocacy experience, participants reported that advocacy increased their stress. When the advocacy experience was positive, some participants reported improved family quality of life. Also, regardless of the nature of the advocacy experience, some participants reported feeling frustration within their marital relationships. Implications for future research and practice are discussed.

Exploring the Perspectives of Parents and Siblings Toward Future Planning for Individuals With Intellectual and Developmental Disabilities

2019 ◽  
Vol 57 (3) ◽  
pp. 198-211 ◽  
Author(s):  
Chung eun Lee ◽  
Meghan M. Burke ◽  
Claire R. Stelter
Keyword(s):  
Developmental Disabilities ◽  
Family Members ◽  
Future Research ◽  
Adult Offspring ◽  
Intellectual And Developmental Disabilities ◽  
Future Planning ◽  
Research And Practice ◽  
Caregiving Roles ◽  
Future Plans

Abstract Parents often provide the bulk of caregiving supports for their adult offspring with intellectual and developmental disabilities (IDD). Given the longer lives of people with IDD, however, such caregiving roles may transition to siblings. Thus, it is critical to conduct future planning among family members (e.g., parents, siblings) to prepare for the transition of caregiving roles. To this end, we interviewed 10 parent-sibling dyads (N = 20) of people with IDD about long-term planning. Both parents and siblings reported family-related and systemic barriers to developing future plans. Siblings (unlike parents) reported wanting more communication among family members about planning. Implications for future research and practice are discussed.

The Effects of Technology Supports on Community Grocery Shopping Skills for Students With Intellectual and Developmental Disabilities: A Meta-Analysis

2021 ◽  
pp. 016264342198997
Author(s):  
Sojung Jung ◽  
Ciara Ousley ◽  
David McNaughton ◽  
Pamela Wolfe
Keyword(s):  
Developmental Disabilities ◽  
Positive Impact ◽  
Single Case ◽  
Effect Sizes ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Positive Effects ◽  
Analytic Review ◽  
Wide Range ◽  
The Impact

In this meta-analytic review, we investigated the effects of technology supports on the acquisition of shopping skills for students with intellectual and developmental disabilities (IDD) between the ages of 5 and 24. Nineteen single-case experimental research studies, presented in 15 research articles, met the current study’s inclusion criteria and the What Works Clearinghouse (WWC) standards. An analysis of potential moderators was conducted, and we calculated effect sizes using Tau-U to examine the impact of age, diagnosis, and type of technology on the reported outcomes for the 56 participants. The results from the included studies provide evidence that a wide range of technology interventions had a positive impact on shopping performance. These positive effects were seen for individuals across a wide range of ages and disability types, and for a wide variety of shopping skills. The strongest effect sizes were observed for technologies that provided visual supports rather than just auditory support. We provide an interpretation of the findings, implications of the results, and recommended areas for future research.

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