Identifying and Defining the Structures That Guide the Implementation of Participant Direction Programs and Support Program Participants: A Document Analysis

This is the author's accepted manuscript. The published version is available at http://dx.doi.org/10.1177/1044207313514112Participant direction (PD) programs offer the individual with a disability or his or 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 participant direction programs: policy and aid and assistance. The component of policy was represented by three structures that guide implementation of participant direction programs: (a) option to participant-direct, (b) participation stipulations, and (c) provider qualifications. The component of aid and assistance was represented by 11 structures that support program participants: (a) financial management services, (b) employer of record, (c) emergency back-up, (d) worker registry, (e) advice/counseling, (f) managerial assistance, (g) information dissemination products, (h) service quality monitoring, (i) service coordination, (j) participant training, and (k) provider training. Each structure was represented by one or more continua depicting the range of choice and control participants may have over the structure. The findings of this study have implications for improving the standardization of research on participant direction programs and the development of long-term care policy

Identifying and defining the activities of participant direction programs: A document analysis

This is the author's accepted manuscript. The published version is available at http://dx.doi.org/10.1177/1044207313502538We analyzed the design of various U.S. programs of participant direction offering participants (individual with a disability or his or her surrogate decision-maker) some level of choice and control over the individual’s long-term care supports and services. We used grounded theory methods to conduct a document analysis of 53 documents published from 2004 through 2008 representing multiple disabilities and program funding sources. In our analysis, we identified three major components (planning, budgeting, and employing) over which participants had the opportunity to exercise choice and control and the activities associated with each. Activities were represented by one or more continua illustrating the range of participant choice and control over the indicator. The component of planning consisted of the activity of care plan development. The budgeting component included the activities of (a) development, (b) individualization, and (c) authority. The employing component included the activities of (a) identifying/selecting providers, (b) hiring/employing providers, (c) scheduling providers, (d) training providers, (e) managing/directing/supervising providers, (f) disciplining/dismissing providers, (g) keeping records, (h) managing payroll, (i) locating emergency back-up, and (j) monitoring service quality. The findings of this study have implications for improving policy, practice, and research in the field of long-term care

A Randomized Trial Examining the Effects of Parent Engagement on Early Language and Literacy: The Getting Ready Intervention

Language and literacy skills established during early childhood are critical for later school success. Parental engagement with children has been linked to a number of adaptive characteristics in preschoolers including language and literacy development, and family-school collaboration is an important contributor to school readiness. This study reports the results of a randomized trial of a parent engagement intervention designed to facilitate school readiness among disadvantaged preschool children, with a particular focus on language and literacy development. Participants included 217 children, 211 parents, and 29 Head Start teachers in 21 schools. Statistically significant differences in favor of the treatment group were observed between treatment and control participants in the rate of change over 2 academic years on teacher reports of children’s language use (d = 1.11), reading (d = 1.25), and writing skills (d = .93). Significant intervention effects on children’s direct measures of expressive language were identified for a subgroup of cases where there were concerns about a child’s development upon entry into preschool. Additionally, other child and family moderators revealed specific variables that influenced the treatment’s effects

Família de crianças com deficiência e profissionais: componentes da parceria colaborativa na escola Family of children with disabilities and professionals: components of the collaborative partnership in school

O presente estudo tem como objetivo identificar e descrever os comportamentos dos profissionais da escola e dos familiares de crianças com deficiência que, na perspectiva dos dois lados, são propiciadores e mantenedores de uma parceria colaborativa efetiva e bem sucedida. O estudo foi conduzido com quatro grupos focais, compostos por familiares (FAM1 e FAM2) e por profissionais (PROF1 e PROF2). Foram conduzidas duas etapas de coleta de dados. Na Etapa 1, as reuniões tiveram por objetivo identificar os componentes da parceria colaborativa. Na Etapa 2, cada um dos grupos focais foi confrontado com os dados obtidos na primeira etapa, sendo que familiares foram confrontados com os dados dos profissionais e vice-versa. Por meio da análise qualitativa dos dados obtidos, foram identificadas e descritas as categorias levantadas pelos participantes referentes aos comportamentos que devem ser emitidos. O estudo apontou que, entre as categorias levantadas, são observadas características essenciais do processo colaborativo, tais como respeito mútuo, comunicação, confiança, participação, amabilidade, sinceridade, seriedade e imparcialidade. Espera-se que o levantamento e a descrição das categorias possam nortear os profissionais da escola e familiares de crianças com deficiência na busca do estabelecimento de uma parceria colaborativa efetiva e de sucesso.<br>This present study aims to identify and describe the behavior of professionals that work in the school and the family of children with disabilities that promote and maintain an effective and successful collaborative partnership, as viewed from both sides. The study was carried out with four focal groups, composed by families (FAM1 and FAM2) and professionals (PROF1 and PROF2). Two phases of data collection were conducted. In Phase 1 the meetings aimed to identify the components of collaborative partnerships. In Phase 2 each of the focal groups was confronted with data obtained during the first phase, i.e. the parents were presented with the data given by the professionals and vice versa. By qualitative analyses of the obtained data, the categories elicited by the participants related to the behaviors that should be emitted were identified and described. The study pointed out that among the elicited categories, essential characteristics of the collaborative process can be observed, such as mutual respect, communication, trust, participation, amicability, sincerity and impartiality. It is expected that the survey and description of the categories will guide professionals and family members of disabled children in search of successful and effective collaborative partnership