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New Jersey Qualitative Report

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NJ Report Table of Contents

Executive Summary   |   Introduction

Executive Summary

The following report presents twenty-five case stories about the experience of adults with disabilities who receive the cash option in the Personal Preference Program in New Jersey. The report focuses 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 the Personal Preference program made a difference in the lives of consumers, representatives, and workers, and if so, how; (2) how does participation in Personal Preference compare with previous arrangements; (3) how are services provided; and (4) how does the program work? Two University of Maryland Baltimore County (UMBC) researchers conducted a total of fifty-seven interviews on two separate trips to New Jersey during August of 2001. After consultation with the Cash and Counseling Demonstration and Evaluation (CCDE) management team, twenty-seven care units were selected. Twenty-five care units were finally completed. All the consumers interviewed had been enrolled in Personal Preference for at least six months at the time of the interview and received at least two hundred dollars per month in the cash option. Care unit members were interviewed in face-to-face, up to hour-long interviews, which were tape-recorded for later transcription. The stories in the report were written based on the transcripts and incorporate the perspectives of all three members of the care unit; consumer, caregiver, and counselor. The UMBC researchers worked together, writing and discussing the stories. All stories were written with an eye to allowing participants to speak for themselves. The stories were analyzed for crosscutting themes that emerged in the interviews. Themes include the family context of care and the community context of care. In addition, participants spoke of topics such as the skills and qualities needed for a caregiver and the value of Personal Preference to them. Important topics/themes also included the value of Personal Preference personal care services, alternative uses of the cash benefit, previous experiences with agency workers, and problems with Personal Preference.

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Introduction

The following report presents twenty-five stories about what it is like as an adult with a disability to participate in the New Jersey Personal Preference program (for a detailed discussion of the Cash and Counseling Demonstration and Evaluation of which New Jersey’s Personal Preference program is a part, see Appendix A). Researchers from the University of Maryland Baltimore County (UMBC) made three trips in July and August of 2001 to New Jersey in order to interview participants about the program and how it worked for them. In their own words we learn what it is like to arrange and pay for one's own care with or without a representative’s help, how participants direct and pay their caregivers, and how participants negotiate the program itself. The twenty-five stories presented here also yield common themes and concerns that help to understand how the New Jersey Personal Preference program works and the meaning it has for participants.

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Cash and Counseling Banner of Participants' Smiling Faces