Informing and Equipping Parents of People With Intellectual and Developmental Disabilities

Gilson, Carly B.; Bethune, Lauren K.; Carter, Erik W.; McMillan, Elise D.

doi:10.1352/1934-9556-55.5.347

Cited by 34 publications

(21 citation statements)

References 24 publications

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“…Sitting across the table from others in the community who can speak to the different ways in which schools, businesses, adult agencies, families, community programs, and other entities can support young people with IDD increases awareness of pathways to employment and other forms of community participation. Outside of these conversations, many of these stakeholders report considerable difficulty finding the information and resources they need to support young people with disabilities well (e.g., Gilson, Bethune, Carter, & McMillan, 2017). At the same time, the manner in which the conversation is introduced by facilitators (e.g., personal stories of individuals, local outcome data) at the outset of the event serves to increase awareness of prevailing outcomes for people with disabilities in the community and the importance of taking steps to make change.…”

Section: Awareness Buildingmentioning

confidence: 99%

The Promise and Possibilities of Community Conversations: Expanding Opportunities for People With Disabilities

Carter

Bumble

2018

Journal of Disability Policy Studies

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Across the United States, young people with intellectual and developmental disabilities (IDD) are making substantial contributions within their communities. Like their peers without disabilities, youth and young adults with IDD possess a breadth of strengths, talents, passions, and qualities that make them indispensable. Whether working in local businesses, attending a college class, volunteering to meet community needs, serving within a faith community, or engaging in advocacy, their considerable contributions contrast with prevailing views of disability that so often accentuate deficits and challenges (Carter et al., 2015). Likewise, communities around the country are demonstrating their capacity to provide the opportunities and supports that enable the full participation and flourishing of young people with IDD. Schools, agencies, organizations, families, and businesses are successfully ensuring opportunities for meaningful community engagement are widespread and well-supported (Carter, Trainor, Ditchman, Swedeen, & Owens, 2009). Unfortunately, we still have a long way to go. These exemplars remain the exception rather than the rule-more anecdotal than ubiquitous. In the area of employment, less than 10% of young adults (ages 18-30) with IDD are accessing integrated employment in their communities (Butterworth & Migliore, 2015). The transition to adulthood is instead marked by unemployment, underemployment, or segregated experiences for so many young people (Carter, Austin, & Trainor, 2012; Grigal, Hart, & Migliore, 2011). Such outcomes reflect clear misalignment with the aspirations of youth with IDD and the expectations of their families. For example, Shogren and Plotner (2012) reported that 78% of transition-age students with intellectual disability (ages 14-16) had postschool employment goals for supported or competitive employment. Likewise, Blustein, Carter, and McMillan (2016) found that 83% of parents considered it important for their child with IDD to obtain a job in the community after high school. These outcomes also represent missed opportunities for businesses in need of a talented, dedicated, and diverse workforce. Of particular concern is that these employment outcomes have hardly moved amid more than 25 years of concerted efforts (Butterworth & Migliore, 2015; Newman, Wagner, Cameto, Knokey, & Shaver, 2010). Calls to expand employment and community access for individuals with IDD have certainly become more prominent and pronounced in recent years. For example, most states have adopted Employment First initiatives, enforcement of the Olmstead decision now extends to employment, the Workforce Innovation and Opportunities Act of 2014 promotes better access to workforce development systems, and federally funded employment systems change efforts have been launched in 14 states (Martinez, 2013; Nord et al., 2015). These movements are supported by strong statements 739408D PSXXX10.

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Section: Awareness Buildingmentioning

confidence: 99%

The Promise and Possibilities of Community Conversations: Expanding Opportunities for People With Disabilities

Carter

Bumble

2018

Journal of Disability Policy Studies

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“…Engaging families as active partners and experts on their child can help facilitate more seamless transitions. Yet many families are unfamiliar with the programs and services available to their children with disabilities during and after high school (Gilson et al, 2017). Schools can help families learn about and connect to the array of formal and informal programs that could assist them and their child with disabilities during the transition years.…”

Section: Working With Familiesmentioning

confidence: 99%

Supporting Strong Transitions Remotely: Considerations and Complexities for Rural Communities During COVID-19

Rowe

Carter

Gajjar

et al. 2020

Rural Special Education Quarterly

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Transition education is a distinctive aspect of special education that extends well beyond the boundaries of the school building, engages partners from all corners of the local community, and addresses so many different life domains. In the midst of a pandemic, creative strategies are needed to equip students with the skills, knowledge, experiences, supports, and relationships that prepare them well for a future of flourishing in adulthood. In this article, we describe key features of high-quality transition education and illustrate some of the ways each area might be addressed remotely or at times when being present together is not possible. In addition, guidance is provided on how to ensure educators and service providers are well-prepared for their roles, as rural districts and communities seek ways to equip students and support their transitions using these new approaches.

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“…Because parents vary considerably in the way they would like to access information (Gilson, Bethune, Carter, & McMillan, 2017), and not all parents can use a computer and connect to the Internet, we acknowledge that a digital tool is not useful for all parents.…”

Section: Influencing Parental Empowermentmentioning

confidence: 99%

Untitled

2019

Child

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Background: To explore experiences of parents of children with disabilities using the WWW, roadmap, a tool to support them in exploring needs, finding information, and asking questions of professionals and to explore differences between parents who had used the WWW-roadmap to prepare for consultation with their rehabilitation physician and parents who had not. Methods: In a sequential cohort study, we included 128 parents; 54 used the WWW-roadmap prior to consultation and 74 received care-as-usual. Both groups completed questionnaires after consultation, assessing empowerment, self-efficacy, parent and physician satisfaction, family centredness of care, and experiences using the tool. Additionally, 13 parents were interviewed. Results: Parents who used the WWW-roadmap looked up more information on the Internet. No other differences between parents and physicians were found. In the interviews, parents said that the WWW-roadmap was a useful tool for looking up information, exploring and asking questions, and maintaining a comprehensive picture. Conclusion: Using the WWW-roadmap prior to consultation did not improve selfefficacy, satisfaction, or family centredness of care. Findings suggest positive experiences regarding factors determining empowerment, creating conditions for a more equal parent-physician relationship. The WWW-roadmap is useful for parents to explore their needs and find information, but more is needed to support empowerment in consultations.

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Informing and Equipping Parents of People With Intellectual and Developmental Disabilities

Cited by 34 publications

References 24 publications

The Promise and Possibilities of Community Conversations: Expanding Opportunities for People With Disabilities

The Promise and Possibilities of Community Conversations: Expanding Opportunities for People With Disabilities

Supporting Strong Transitions Remotely: Considerations and Complexities for Rural Communities During COVID-19

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