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

sj-docx-1-afs-10.1177_0095327X231197992 – Supplemental material for Military-Connected Children With Special Health Care Needs and Their Families: A Literature Review

Supplemental material, sj-docx-1-afs-10.1177_0095327X231197992 for Military-Connected Children With Special Health Care Needs and Their Families: A Literature Review by Antoinette “Toni” Hill and Martha Blue-Banning in Armed Forces & Society</p