Success Stories and Survey Results from California’s Individual Self-Sufficiency Planning (ISSP) Project By: John Shea Allen, Shea & Associates 1780 Third Street Napa, CA 94559 Ph: 707-258-1326 • Fax: 707-258-8354 Email: [email protected] • Website: www.allenshea.com Steve Ekstrom The Results Group 819 Sonoma Avenue Santa Rosa, CA 95404 Ph: 707-577-0818 • Fax: 707-577-0821 Email: [email protected] • Website: www.theresultsgroup.com December 31, 2004 Success Stories and Survey Results Being Successful Brings Other Beneficial Change Reality [a pseudonym] said it was hard for him to see the differences in his life. Others can see, better than he can, he said. So, I asked whether he would mind if his daughter shared her perceptions of the change. Reality said “sure.” Compared with the past, his daughter said that her father: • is more confident; • is more excited about things (e.g., going to work); • is a better father and a better friend; • is a great listener; and • cares more about himself (appearance, etc.) and those around him. -- Personal interview by one of the Evaluators Allen, Shea & Associates December 31, 2004 2 Success Stories and Survey Results Acknowledgments We want to thank a number of ISSP project participants for sharing their stories, and others for responding by mail or telephone to a survey. We are deeply indebted to the men and women who we had the privilege of interviewing in August 2004. Steve and I came away marveling at their tenacity and resilience. We wish this wonderful group of fellow citizens the very best in the years ahead. All participant names have been replaced with pseudonyms to protect privacy. We also want to express our gratitude to Amy Allen, who did a fine job interviewing non- respondents to our mail questionnaire survey. She received brief training before undertaking the work. She practiced with John Shea and her parents, both of whom have a background in counseling and mental health. Training emphasis was on establishing and maintaining rapport, understanding how to ask the questions, listening carefully and recording what was said, and probing in ways to avoid influencing the respondent’s message. Our thanks to leaders at the two sites, Dennis Farrell (Kern), and Robert Manchia and Judy Downing (San Mateo), and to their ISSP Project staffs: Carol Bowman and Angelina Quintana (Kern) and Joe Hennen, Nancie Broman, and Greg Wild (San Mateo), who were gracious in their support of this effort. We are most grateful for their work in compiling up-to-date mailing lists, with telephone numbers, and for arranging interviews when we visited each site last August. This report has been a collaborative effort among the California Department of Rehabilitation, Department of Mental Health, and the Social Security Administration. This study was funded, in part, through a Cooperative Agreement between the Social Security Administration and the State of California (Grant #12-D-70339-9-01). The contents and opinions expressed herein do not necessarily reflect the position or policy of the Social Security Administration or of the California Departments of Mental Health or Rehabilitation, and no official endorsement should be inferred. Requests for copies of this report should be sent to John Shea, Allen, Shea & Associates, 1780 Third Street, Napa, CA 94559 (email: [email protected]) John Shea Steve Ekstrom Allen, Shea & Associates December 31, 2004 3 Success Stories and Survey Results Allen, Shea & Associates December 31, 2004 4 Success Stories and Survey Results Contents Page Acknowledgments......................................................................................... 3 Executive Summary.......................................................................... 7 Background.................................................................................................... 9 Methods........................................................................................................... 9 Findings........................................................................................................... 11 Deciding to Enroll in the Project................................................................... 11 Helpful Services........................................................................................... 13 Work, Earnings, and Benefits....................................................................... 27 Onset and Work History............................................................................... 27 Work Ethic, Growing Up............................................................................... 29 What Accounts for Success; Advice to Others............................................. 30 Policy and Practice Implications ....................................................... 33 Individuals and Advocates............................................................................ 34 Specialized Employment Services............................................................... 36 Social Security Administration...................................................................... 40 Appendices Appendix A. Interview Schedule.................................................................. 47 Appendix B. Success Stories...................................................................... 51 Appendix C. Mail/Telephone Questionnaire................................................ 95 Appendix D. Pamphlet Accompanying Questionnaire................................. 97 Appendix E. Questionnaire Survey Results................................................. 99 Allen, Shea & Associates December 31, 2004 5 Success Stories and Survey Results Allen, Shea & Associates December 31, 2004 6 Success Stories and Survey Results Success Stories and Survey Results from California’s Individual Self-Sufficiency Planning (ISSP) Project Executive Summary This report contains a number of success stories from participants in the ISSP project, along with the results of a mail/telephone survey of essentially all participants, current and past. Nineteen full stories are included, along with survey results from 106 respondents to the questionnaire survey and parts of stories from nine other interviewees. The purpose of the personal interviews and the questionnaire survey has been to learn from participant experiences and to close a chapter (the ISSP project) in participant lives. Findings Project Enrollment. -- Regarding factors prompting enrollment in the ISSP project, interviewees mentioned most frequently Learning about the project from ISSP staff, mental health counselors, and/or project participants. Getting help finding (or keeping) a job and Having a higher income (e.g., through SSI waivers) were also common themes. Survey respondents rated highly (1) “My own personal interest and motivation,” (2) “Economic necessity,” and (3) “Possibility of Social Security ‘waivers.’” Family and friends were rated least important, with “MD or counselor advice” in-between. Most Useful Services. -- Survey respondents were asked to rate on a 10-point scale a specified set of eight services. All were ranked highly, with the lowest mean score 7.9 for Vocational (career) counseling. The three highest rated were (1) Accessing (or, maintaining) public benefits (e.g., Social Security, food stamps, housing); (2) Mental health services (e.g., medication, therapy); and (3) Help keeping a job, or progressing in a career. Interviewees most often mentioned Dealing with Social Security (e.g., overpayments, wage reporting, problem-solving). Things [about the project] especially liked, things not liked or that could have been better. – Many more survey respondents mentioned something especially liked than not liked or could have been better. Nearly three-fifths of positive remarks were in the category of “helpful or supportive staff, in general.” Under the could have been better rubric, the category with the most remarks was “work, job, employment, training.” In second place was expressed disappointment about the ending of the project. Work, Earnings, and Benefits. – For 26 of the 27 interviewees, using reported earnings in July 2004, along with SSA benefit information, we were able to assess the dollar (and percentage) impact of return to baseline (i.e., ending of the $3 for $4 SSI waiver). The biggest absolute change will be $336.50 per month for Wayne, who earned $1,899 in July 2004. The smallest absolute and percentage change will be for Anthony ($18.50 per month, or –0.6%), who earned $3,171 last July. The largest percentage changes in total income (- 17.7% in both cases) will be for two participants whose earnings were very close to the cash cut-off point under the $1 for $2 rule. Allen, Shea & Associates December 31, 2004 7 Success Stories and Survey Results Onset, Work History. – Interviewees gave us their recollections of work before onset of mental illness and subsequently. Most were diagnosed with a psychiatric disability as adolescents or young adults. Many could identify difficulties earlier in life. For some, inability to stay employed was a sign that something was wrong. Among the 27 stories, there are expected differences in work histories related to current employment and earnings. Work Ethic, Growing Up. – In both success stories and in questionnaire responses, one finds – with very few exceptions – that most participants grew up in regular families (typically, two parent), and that most received clear messages that both schooling and work would be important for their futures. What Account for Success; Advice to Others. – Interviewees were asked what factors may have made a difference in their employment success. Nearly all mentioned (1) positive behavior and attitudes. Somewhat fewer mentioned (2) dealing successfully with mental illness; (3) persistence, tenacity or drive; and (4) using available services and supports. In fifth place were remarks about (5) faith, spirituality, or philosophy. Policy and Practice Implications Individuals and Advocates. – The central suggestions seem to be (1) managing mental illness well; (2) developing and maintaining motivation, drive, and associated attitudes and behavior; and (3) using available services and supports to accomplish one’s goals. Specialized Employment Services. – Key recommendations include (1) having services and supports available to help with return to work; (2) individualizing services; (3) being accessible and wisely responsive to service users; (4) developing ‘systems’ for those returning to work to assist them in becoming more self-reliant; and (5) working effectively with others. Social Security Administration Policy. – We reiterated a recommendation in our Revised Interim Report regarding the SSDI SGA cliff issue, calling for simplification (e.g., getting rid of the Trial Work Period and EPE), and “taxing” (through reduced SSDI cash benefits) earnings above a variable level based on earnings prior to disability. We describe the many different ways individuals are likely to respond to the end or the $3 for $4 SSI waiver. We suggest greater emphasis on wealth acquisition through IDAs, IAs, and raising of the $2,000 countable resource limit. Based on interviews and survey results, we make a case for (1) disengaging publicly-funded health insurance from SSA benefit status; (2) testing enhanced work incentives to attract and retain individuals in vocational rehabilitation and employment status (a change from our recommendation in the Revised Interim Report); and (3) testing use of enhanced work incentives (e.g., $3 for $4 and savings accounts) contingent on effort and accomplishment, with time limitations. Finally, regarding fear of loss of benefits from working, we recommend outreach efforts within disability communities to change pervasive points of view toward work and greater self-sufficiency. Nineteen success stories, in detail, can be found in Appendix B. Questionnaire survey results, beyond those in the text, are in Appendix E. The other appendices show instruments and a pamphlet accompanying the mail questionnaire. Allen, Shea & Associates December 31, 2004 8 Success Stories and Survey Results Background At its meeting in June 2004, the Statewide Coordinating Committee for the ISSP project asked the project evaluators to do two things: (1) interview a number of successful project participants; and (2) survey all present and past participants, to acknowledge the end of the project and to learn from their experiences. What One Person Got from the ISSP Project The ISSP program gave all of us that were involved one of the biggest reasons to get better (health wise). The biggest reason was believing in myself again. It gave me a dream for the future. The program was the best thing Social Security ever had to offer people on SSI. -- Respondent to Mail/Telephone Survey Methods We asked project staff at the two sites, Vocational Rehabilitation Services (VRS) in San Mateo County and On-Track Employment Services (OTES) in Kern County, for help in identifying participants who had been successful and who would consent to interviews to get success stories. After some discussion of dimensions of success, interviews were arranged with 27 individuals: 10 at Kern County, and the rest at the larger project site in San Mateo. We sought interviews with individuals who had been economically successful, in terms of employment, earnings, career advancement, and reduced reliance on Social Security benefits. We agreed with the sites on two things. First, there are multiple dimensions of success, involving best possible health, good citizenship, relationships with others, living more independently (e.g., in own home), success in raising a family, and the like. Second, we acknowledged that success should be person-referenced. Some Allen, Shea & Associates December 31, 2004 9 Success Stories and Survey Results individuals have a lot going for them (e.g., solid work history, higher education, supportive family) and one may reasonably expect more from such individuals than from someone with fewer “assets,” facing higher barriers to economic success. We clarified that we wanted to talk with individuals who were economically successful, because of the interests of the Social Security Administration in reducing the outflow of transfer payments from the Social Security Trust Fund and general taxpayer to individuals with disabilities. We developed an Interview Schedule, had it reviewed by the sites and members of the Statewide Coordinating Committee, and revised it accordingly. A copy can be found in Appendix A. One will see in both that instrument, and in the mail/telephone questionnaire (Appendix C), an interest in messages sent both verbally and by behavior to the participants when they were teenagers. This is because of an interest in knowing whether inculcation of a work ethic at an early age makes a difference in later economic success. We knew, in advance, of course, that responses to the questions about messages received regarding work and school would not answer the question posed, because we were not interviewing participants who were less successful economically to get comparison responses. Nevertheless, we think the information is of interest. Personal interviews at site offices lasted anywhere from about half-an-hour to two hours, with the typical interview being completed in an hour. The questionnaire was mailed to nearly everyone on lists provided by the sites. Questionnaires went out in envelopes with site return addresses, cover letters signed by site leaders (Farrell and Manchia) and John Shea, with an explanatory pamphlet (Appendix D), a self-address and stamped return envelope addressed to Allen, Shea & Associates, and a slip with names of phone numbers of ISSP staff if the respondent wanted assistance in completing the survey. For the questionnaire survey, our initial list had 293 names and addresses – 155 from the San Mateo site, and 138 from Kern. A few names had been removed, because the person left the project and area, and no forwarding address was available. Of 138 Allen, Shea & Associates December 31, 2004 10