Sibling Advocacy: Perspectives About Advocacy FromSiblings of Individuals With Intellectual and Developmental Disabilities

Inclusion ◽  
2015 ◽  
Vol 3 (3) ◽  
pp. 162-175 ◽  
Author(s):  
Meghan M. Burke ◽  
Catherine K. Arnold ◽  
Aleksa L. Owen
Keyword(s):  
Developmental Disabilities ◽  
Focus Groups ◽  
Peer Support ◽  
Research Policy ◽  
Intellectual And Developmental Disabilities ◽  
Policy And Practice ◽  
Brothers And Sisters

Abstract As individuals with intellectual and developmental disabilities (IDD) live longer and begin to outlive their parents, siblings take on greater supportive roles including advocacy. Yet, little is known about the ways in which siblings advocate with and for their brothers and sisters with IDD as well as for broad, systemic changes. In this study, we conducted four focus groups (N = 18) with siblings of individuals with IDD. We found that siblings defined and engaged in case advocacy (i.e., advocacy on behalf of their brothers and sisters with IDD) and cause advocacy (i.e., advocacy for larger systemic changes). Regarding case advocacy, siblings were motivated to advocate to secure appropriate services for their brothers and sisters. For cause advocacy, siblings attempted to create sweeping changes for individuals with IDD by educating others and participating in collective advocacy methods. Regardless of the type of advocacy, all siblings felt they needed more information and peer support to effectively advocate. Implications for research, policy, and practice are discussed.

A Comparative Analysis of Adult Siblings' Perceptions Toward Caregiving

2015 ◽  
Vol 53 (2) ◽  
pp. 143-157 ◽  
Author(s):  
Meghan M. Burke ◽  
Thomas Fish ◽  
Kathy Lawton
Keyword(s):  
Comparative Analysis ◽  
Developmental Disabilities ◽  
Focus Groups ◽  
Service System ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
The Future ◽  
Brothers And Sisters

Abstract Siblings of individuals with intellectual and developmental disabilities (IDD) are likely to become caregivers for their brothers and sisters. The expectations of and experiences with caregiving, however, may be different. In this study, using focus groups, we compared the perspectives of siblings who were current caregivers (n  =  25) to siblings who anticipated being caregivers (n  =  17). Responses were compared and contrasted across four areas: caregiving responsibilities, rewards, challenges, and opinions toward being paid as a caregiver. Both caregiver groups were knowledgeable about and invested in their brothers and sisters. Also, they both reported that they enjoyed bonding with their brothers and sisters. Challenges, for current caregivers, related to understanding and navigating the service system. In contrast, anticipated caregivers were concerned about planning for the future. Mixed viewpoints were expressed about receiving pay for providing care although a greater number of current caregivers were receptive to it as a means to supporting their own families.

Supporting Inclusion and Flourishing in the Religious and Spiritual Lives of People With Intellectual and Developmental Disabilities

Inclusion ◽  
2013 ◽  
Vol 1 (1) ◽  
pp. 64-75 ◽  
Author(s):  
Erik W. Carter
Keyword(s):  
Developmental Disabilities ◽  
Research Policy ◽  
People With Disabilities ◽  
Service Systems ◽  
Intellectual And Developmental Disabilities ◽  
Religion And Spirituality ◽  
Culturally Competent ◽  
Religious Activities ◽  
Policy And Practice ◽  
Services And Supports

Abstract An important aspect of supporting many people with intellectual and developmental disabilities to flourish involves providing meaningful opportunities to participate in the spiritual and religious life of their community. Yet, a review of prevailing practices suggests the spirituality and faith community connections of individuals with intellectual disability, autism, and other developmental disabilities may be inconsistently supported or entirely overlooked. This article suggests an initial framework for research, policy, and practice aimed at fostering inclusion at the intersection of disability, religion, and spirituality. Recommendations are offered for designing services and supports that ensure that (a) people with disabilities can participate fully in inclusive spiritual and religious activities, (b) congregations develop the commitment and capacity to welcome people with disabilities and their families, (c) families receive support in ways that honor their faith commitments and connections, and (d) service systems support people with disabilities and their families in comprehensive and culturally competent ways.

Honor the Past. Then Get Over It.

2015 ◽  
Vol 53 (6) ◽  
pp. 409-413
Author(s):  
Sue Swenson
Keyword(s):  
Developmental Disabilities ◽  
Independent Living ◽  
Research Policy ◽  
Community Integration ◽  
The United States ◽  
Intellectual And Developmental Disabilities ◽  
Training Center ◽  
Policy And Practice ◽  
Rehabilitation Research ◽  
And Training

Abstract This speech was presented at a conference, the National Goals in Research, Policy, and Practice, held in Washington, DC, on August 6-7, 2015. The conference was a working meeting to summarize the current state of knowledge and identify a platform of national goals in research, practice, and policy in intellectual and developmental disabilities. The meeting was jointly organized by the Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota; Rehabilitation Research and Training Center on Developmental Disabilities and Health, Institute on Disability and Human Development, University of Illinois Chicago; Rehabilitation Research and Training Center on Advancing Employment for Individuals with Intellectual and Developmental Disabilities, Institute for Community Inclusion, University of Massachusetts Boston; The Arc of the United States; Association of University Centers on Disabilities (AUCD); and American Association on Intellectual and Developmental Disabilities (AAIDD), with the support of National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

Ensuring Quality Education to Promote Transition: A Summary of Existing Studies

Inclusion ◽  
2018 ◽  
Vol 6 (4) ◽  
pp. 258-273
Author(s):  
Martin Agran ◽  
Fred Spooner ◽  
Colleen Robertson
Keyword(s):  
Developmental Disabilities ◽  
Research Policy ◽  
Health And Safety ◽  
Secondary Level ◽  
Skills Training ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Safety Skills ◽  
Policy And Practice ◽  
Research Areas

Abstract The American Association on Intellectual and Developmental Disabilities (AAIDD) hosted the National Goals in Research, Policy, and Practice working meeting in August, 2015, to identify key national policies, priorities, and practices to serve and support students with intellectual and developmental disabilities (IDD) at the secondary level. The purpose of this article is to extend the discussion of several topics discussed at the meeting and suggest future research areas in the areas of: academic instruction; social skills training; balancing/aligning academic, functional, and transition education skills; importance of health and safety skills; extending common core standards to include functional and transition skills; teaching and realizing self-determination skills; preparing students with IDD for postsecondary educational opportunities; weighing the respective benefits of inclusive and community-based instructional activities; and promoting citizenship (teaching voting skills). To ensure quality secondary-level programs for students with IDD, the authors recommend that the above content areas be considered.

scholarly journals Understanding Community

2016 ◽  
Vol 5 (4) ◽  
pp. 181
Author(s):  
Virginia Cobigo ◽  
Lynn Martin ◽  
Rawad Mcheimech
Keyword(s):  
Developmental Disabilities ◽  
Literature Review ◽  
Qualitative Analysis ◽  
Focus Groups ◽  
Academic Research ◽  
Intellectual And Developmental Disabilities ◽  
Policy And Practice ◽  
Definition Of ◽  
Object Of Study ◽  
Novel Concept

The term community is used extensively in the peer reviewed literature, though it is used differently by researchers across various disciplines. A better understanding of community, as an object of study, is needed to help guide policy, supports and services planning, and to build inclusive communities. This paper presents the results of a review of existing definitions published in peer-reviewed papers from various disciplines studying human behaviours and interactions. It also presents the results of focus groups with four persons with intellectual and developmental disabilities and members of their communities exploring their own definitions of community. Definitions of community extracted from the peer-reviewed literature were compared to identify common themes. Qualitative analysis revealed 13 themes, some more common than others. Focus groups transcripts were also analyzed. Themes identified in the literature review were also found in the focus groups discussion. However, a novel concept related to the notion of community as being composed of people who are unpaid to be part of this network was identified. Based on these results, a definition of community is derived to help further not only academic research in the area, but also to inform policy and practice aiming to build inclusive communities.

Employment and Economic Self-Sufficiency:2015 National Goals for Research, Policy, and Practice

Inclusion ◽  
2015 ◽  
Vol 3 (4) ◽  
pp. 227-232 ◽  
Author(s):  
Derek Nord ◽  
Allison Barkoff ◽  
John Butterworth ◽  
Dawn Carlson ◽  
Robert Cimera ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Research Policy ◽  
Intellectual And Developmental Disabilities ◽  
Policy And Practice ◽  
Self Sufficiency

Abstract Employment in general workforce and economic self-sufficiency continue to be the exceptions for people with intellectual and developmental disabilities (IDD), rather than the norm. Research, policy, and practice can and should play a coordinated role in solving this problem. This article summarizes the methods used and the consensus-based national goals identified to guide the direction of the field that were developed by experts in the field. A discussion of the implications of the findings is also provided, including the need for advocacy to advance the goals.

Falling Through the Cracks: Caregivers’ Experiences With Choice of Providers

2016 ◽  
Vol 30 (4) ◽  
pp. 338-352
Author(s):  
Susan Neely-Barnes ◽  
Stephen Zanskas ◽  
Daniel Lustig ◽  
Rachel Duerr ◽  
Minna Zhao
Keyword(s):  
Developmental Disabilities ◽  
Focus Groups ◽  
Independent Living ◽  
Direct Care ◽  
Care Staff ◽  
Intellectual And Developmental Disabilities ◽  
Direct Care Staff ◽  
Lack Of Information ◽  
Caregiver Needs ◽  
Interpretive Method

Purpose:We sought to understand the experiences of family members and direct care staff of adults with intellectual and developmental disabilities in a private pay day program focused on socialization and recreational skills.Method:Two focus groups were held with parents/caregivers and one with staff. Using an interpretive method, two investigators independently coded the transcripts and arrived at themes.Results:Themes identified included transition, lack of information, lack of resources, caregiver needs, independence, employment, and education.Conclusion:Families and staff experienced frustration with service fragmentation/access to alternative programming. Families and staff wanted opportunities for employment and independent living programming but lacked resources. Implications for practice and policy are discussed.

Recommendations of the Self-Determination and Self-Advocacy Strand From the National Goals 2015 Conference

Inclusion ◽  
2015 ◽  
Vol 3 (4) ◽  
pp. 205-210 ◽  
Author(s):  
Karrie A. Shogren ◽  
Brian Abery ◽  
Anthony Antosh ◽  
Ricky Broussard ◽  
Barbara Coppens ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
The Self ◽  
Self Determination ◽  
Intellectual And Developmental Disabilities ◽  
Policy And Practice ◽  
Self Advocacy ◽  
Collective Self ◽  
Research Initiatives

Abstract This article reports the recommendations of the Self-Determination and Self-Advocacy Strand from the National Goals 2015 conference. The recommendations provide direction on research goals to advance policy and practice related to self-advocacy and self-determination over the next 10 years. Seven recommendations and multiple subrecommendations were developed over a 2-day meeting by leaders in the field of intellectual and developmental disabilities. The recommended goals provide direction for research initiatives related to collective self-advocacy and personal self-determination. Implications for the field are discussed.

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