|Sample||How We Wrote The Stories|
The purpose of the qualitative study was to provide detailed information and stories about the experiences of participants receiving the “cash option” in Florida’s Consumer Directed Care program. The study focused on how “care units,” composed of consumers and/or representatives, paid workers, and counselors interacted around issues of consumer directed care. The study addresses several broad research questions: (1) has Consumer Directed Care made a difference in the lives of consumers, representatives, and workers, and if so, how; (2) how does participation in the Consumer Directed Care program compare with previous arrangements; (3) in what manner are services provided, and (4) how does the program work?
Following the approach taken by Keigher and Luz , the focus was on both consumers (Consumer Directed Care participants and their families) and their paid workers (both family and non-family member workers). Additionally, interviews were conducted with state consultants assigned to provide oversight for those consumers and are included as part of the care unit interviews.
Qualitative data collection (involving interviews, visits to consumers homes, and travel throughout the state) took place in Florida in July and August 2002. Face-to-face, semi-structured interviews lasting about one hour each were conducted with the members of 24 care units. The tape-recorded interviews were conducted by two trained interviewers and took place in the consumers’ homes. One of the interviewers was able to interview participants in Spanish when necessary. Each consumer interviewed had participated in the Florida Consumer Directed Care program for at least six months. Consumers of different ages (including children under 18), races, genders, monthly cash benefit amounts, and type of care workers were interviewed.
Three semi-structured interview protocols (consumer/representative, paid caregiver, and counselor) were developed through an iterative process of consultation with the Cash and Counseling Program management team (included representatives from the program management office, Mathematica Policy Research, Consumer Directed Care Program in Florida, Assistant Secretary for Planning and Evaluation-U.S. Department of Health and Human Services, and the Robert Wood Johnson Foundation). Interviews included open-ended questions organized under three headings: background, services, and operations of the program.
Selection criteria for the care units (triads including consumer/representative, paid worker, and counselor) were developed in close consultation with the Management team and the Florida program office. Four main selection criteria were identified as: age 0-17/18-64/65+, ethnicity African American/Hispanic/White, type of worker family/non-family, and representative/no representative. Other variables taken into consideration to ensure maximum variability were county of residence, variations in use of the cash benefit, disability level (determined by level of Medicaid benefit, but above $600 per month), gender, and language. The Florida sample included children with disabilities under 18 years of age.
The names of eligible consumers (i.e., had participated in the program for at least six months and fitting the selection criteria) to contact were derived from lists provided by Mathematica Policy Research and Florida program office. Research staff then telephoned potential subjects to enlist their participation and schedule home visits to conduct interviews.
A total of 58 interviews were conducted (24 care units composed of 46 consumers/representatives and paid workers, and 12 counselors). Two female interviewers made one visit to Florida in July and August 2002 to conduct the interviews. All interviews with consumers and paid workers were face-to-face and conducted in the home of the consumer. In most cases, consumers and paid workers were interviewed during the same visit. The representatives of children with disabilities were interviewed. In many cases the child was present at the interview and participated in answering questions. Interviews averaged about one hour and were tape-recorded.
Twelve counselors were interviewed by phone at a later date. Counselors were asked about their activities as counselors in the Consumer Directed Care program generally, and specifically, about the consumers in the study for whom they were responsible.
Individual tape recordings were transcribed verbatim as Word documents. Stories were written from the three interview transcripts in each care unit.
We wrote each of the twenty-four stories based on related interviews with a consumer, personal care worker, and counselor. In writing the stories, we tried to incorporate all three perspectives on a topic or story whenever possible. Each story relies heavily on direct quotations with a limited amount of our writing to connect the narrative. We also used the interviewers’ case summaries to add detail to the stories.
Occasionally, the facts or chronologies were not clear or were in conflict with the information in other interviews within a unit. In some cases the discrepancies came about because of a time lag between interviews, differences of viewpoint about the topic, or a lack of knowledge on the part of a member of the unit. In cases where facts were unclear or contradictory, we checked the interviewer’s notes and reconciled evidence within the transcripts themselves.
One author wrote the original story drafts. The accuracy of the stories were checked by a member of the team who conducted the interviews. We added topic headings in each story to facilitate reading and comparison between stories. Names are all pseudonyms. Places, companies, and agency names have been eliminated or fictitious names used in their stead.
Within quotations, three periods represent a short break within an answer such as an interviewer breaking in to ask a question. Four periods are used to indicate a considerable break in the conversation. For example, sometimes a consumer returned to a topic or expanded on an answer much later in an interview. Parentheses within a quote include our clarification of a reference to a person or event. The terms caregiver, care worker, and care provider were used interchangeably as were consumer and participant.
Quotations were rendered as close to verbatim as possible in order to preserve the rhythm and regional flavor of the interviewees’ speech patterns. Above all, the participants speak for themselves about what life is like for them in the Consumer Directed Care program.