Examining the Experiences and Decisions of Parents/Guardians

Gross, Judith M. S.; Wallace, Luchara; Blue-Banning, Martha; Summers, Jean Ann; Turnbull, Ann P.

doi:10.1177/1044207312439102

Cited by 23 publications

(27 citation statements)

References 24 publications

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“…Poorer outcomes in community participation for adults with IDD result when families are without needed supports (Hewitt & Larson, 2007). Consistent with prior research (Gross, Wallace, Blue-Banning, Summers, & Turnbull, 2012), the parents in this study utilized participant direction to transform the challenge of maintaining quality and consistent DSPs into an asset to facilitate progress toward desired outcomes. Half of the participants employed DSPs who had been with them for at least four years.…”

Section: Parent Involvement In Post-school Experiences 20supporting

confidence: 61%

“…Additionally, adult agencies should increase efforts to teach all parents about the option and process of participant direction. Efforts to reduce required paperwork or to better prepare families to complete it would likely reduce the skepticism with which some families approach participant direction (Gross et al, 2012). The families in this study utilized participant direction to maintain quality and consistent DSPs who effectively enacted individualized supports for living inclusive and self-determined lives.…”

Section: Discussionmentioning

confidence: 99%

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Parent Involvement in Meaningful Post-School Experiences for Young Adults With IDD and Pervasive Support Needs

Rossetti

Lehr

Pelerin

et al. 2016

Intellectual and Developmental Disabilities

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Despite initiatives supporting young adults with intellectual and developmental disabilities (IDD) to engage in post-secondary education and integrated employment, those with more intensive support needs are not as easily involved in these post-school experiences. In an effort to learn from positive examples, we examined parent involvement in meaningful post-school experiences by eight young adults with IDD and pervasive support needs. Secondary analysis of data from a prior interview study yielded this smaller sample of eight young adults with meaningful post-school experiences. Their parents were actively involved as fierce advocates and creative problem solvers. The active involvement of parents included: a) attitudinal facilitators, b) advocacy efforts and perceptions, and c) strategic actions. Implications for future research and practice are described.

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Section: Parent Involvement In Post-school Experiences 20supporting

confidence: 61%

Section: Discussionmentioning

confidence: 99%

Parent Involvement in Meaningful Post-School Experiences for Young Adults With IDD and Pervasive Support Needs

Rossetti

Lehr

Pelerin

et al. 2016

Intellectual and Developmental Disabilities

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“…Findings indicated that there is still substantial debate around these issues, and policies range from extremely restricted to extremely flexible, despite research showing that people with significant support needs participate in and benefit from supported decision-making in directing their supports and services (Gross et al, 2012;Neely-Barnes, Graff, Marcenko, & Weber, 2008) and hiring family and friends to provide long-term care (Whitlatch & Feinberg, 2006). These structures represented the various types of support provided by the state or its agent to program participants.…”

Section: Discussionmentioning

confidence: 99%

“…We searched 12 social science library databases for peer-reviewed literature, a scholarly research focused search engine and a clearinghouse for gray literature (i.e., documents not published commercially, such as program manuals, organization reports, position statements, policy briefs). We selected the sources for gray literature to search based on site descriptions and previous research (Gross, Wallace, Blue-Banning, Summers, & Turnbull, 2012). Sample selection.…”

Section: Data Collectionmentioning

confidence: 99%

Identifying and Defining the Structures That Guide the Implementation of Participant Direction Programs and Support Program Participants

Gross

Blue-Banning

Turnbull

et al. 2014

Journal of Disability Policy Studies

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Participant direction (PD) programs offer the individual with a disability or his/her surrogate decision maker varying degrees of choice and control over the individual's supports and services.We conducted a document analysis using grounded theory methods to identify the design elements of participant direction programs in long-term care. We analyzed 53 documents across multiple disabilities and funding sources. We identified and defined two major components of The need for long-term care supports and services is growing (Kaye, Harrington, & LaPlante, 2010). Long-term care refers to the supports and services needed to meet individual care and assistance needs over an extended or ongoing period of time for those who are unable to be fully independent. Traditionally, publicly paid long-term care has been provided through an agency direction model in which the individual with a disability has minimal input regarding the decisions made and the services provided to meet his or her needs (Clark, Hagglund, & Sherman, 2008;Jamison Rissi, 2007;O'Keeffe, Wiener, & Greene, 2005). In agency direction, the agency typically draws down the money from the benefit source (e.g., Medicaid); service providers are employed by the agency, and the individual is a recipient of the agency's services. The agency typically is the employer of the service providers and assumes the responsibilities of recruiting, hiring, training, scheduling, managing, disciplining, and paying the service providers.By contrast, programs of participant direction offer the individual or his/her surrogate decision maker (hereafter collectively referred to as "participants") varying degrees of decisionmaking authority. Decisions may include deciding what goods and services are purchased, how and where they are implemented, and by whom. Programs are premised on the belief that participants should be primarily responsible for directing their supports and services, regardless of disability or extent of support needs (National Institute of Consumer-Directed Care Services, 1996). However, the distinction between agency direction and participant direction programs is not black and white; rather, it is characterized by shades of gray. Variation in Programs of Participant DirectionIn 2001 State of Existing ResearchA number of studies on participant direction, using both qualitative and quantitative methods (Beatty, Richmond, Tepper, & DeJong, 1998;Benjamin & Matthias, 2000;Caldwell, 2006;Caldwell & Heller, 2003;Caldwell & Heller, 2007;Clark et al., 2008;Doty, Benjamin, Matthias, & Franke, 1999;Foster, Brown, Phillips, Schore, & Carlson, 2003;Foster, Brown, Phillips, & Carlson, 2005;Heller, Miller, & Hsieh, 1999), have focused on topics specific to individual or family caregiver outcomes, including: (a) satisfaction with services, (b) existence of 4 PARTICIPANT DIRECTION unmet needs, (c) physical well-being (e.g., health and safety), (d) emotional well-being, (f) financial well-being, (g) community integration, (h) general quality of life, (i) satisfaction wit...

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“…According to these parents, work was not the only way to have meaning in one's life. Second, to support choice and self-determination (Bradley, 2000), families need greater awareness and easier implementation of participant-directed services (Caldwell, 2007;Gross, Wallace, Blue-Banning, Summers, & Turnbull, 2012). The flexibility afforded by this option allowed families to achieve many of the positive outcomes described.…”

Section: Discussionmentioning

confidence: 99%

Parent Perceptions of Time Spent Meaningfully by Young Adults With Pervasive Support Needs

Rossetti

Lehr

Lederer³

et al. 2015

Research and Practice for Persons with Severe Disabilities

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This article describes a qualitative study that examined how 23 young adults with pervasive support needs and limited functional communication spent their time and how their parents (n = 23) and direct support professionals (DSPs; n = 2) defined meaningfulness in relation to the young adults' experiences. Data were collected through semi-structured interviews with the parents and DSPs. Findings indicated that most of the young adults spent time in their communities, though typically without friends and not engaged in integrated employment. The participants defined meaningfulness according to three dimensions: community participation, individual indicators, and the nature of activities in the young adults' schedules. They also described both episodic and ongoing challenges that hindered their ability to focus on time spent meaningfully. Finally, their definitions, which reflected basic care needs and community participation goals, raised questions related to the awareness, availability, and utilization of services and supports in the adult developmental disabilities system. Keywords pervasive support needs, post-secondary outcomes, parents, employment Many young adults experience the pressure of trying to figure out what to do after K-12 schooling typically in the areas of post-secondary education, employment, and adult living. The Individuals With Disabilities Education Improvement Act (IDEIA; 2004) emphasized these same goals for young adults with disabilities as part of national policy designed to ensure "equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities." However, research on post-school outcomes for students who received special education services indicates low rates of post-secondary school attendance, employment, and independent living, especially for those with more significant needs

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Examining the Experiences and Decisions of Parents/Guardians

Cited by 23 publications

References 24 publications

Parent Involvement in Meaningful Post-School Experiences for Young Adults With IDD and Pervasive Support Needs

Parent Involvement in Meaningful Post-School Experiences for Young Adults With IDD and Pervasive Support Needs

Identifying and Defining the Structures That Guide the Implementation of Participant Direction Programs and Support Program Participants

Parent Perceptions of Time Spent Meaningfully by Young Adults With Pervasive Support Needs

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