Person centered planning in a transition program for Bronx youth with disabilities

Children and Youth Services Review 33 (2011) 810–819

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Children and Youth Services Review j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / c h i l d yo u t h

Person centered planning in a transition program for Bronx youth with disabilities Erin E. Croke a,1, Ashleigh B. Thompson b,⁎ a b

Office of Undergraduate Studies, City University of New York, 535 E. 80th St., 6th Floor, New York, NY 10075, USA JFK, Jr. Institute, City University of New York, 101 W. 31st St., 14th Floor, New York, NY 10001, USA

a r t i c l e

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Article history: Received 17 September 2010 Received in revised form 24 November 2010 Accepted 28 November 2010 Available online 4 December 2010 Keywords: Transition Youth Disability Person-centered planning Self-determination Goal setting

a b s t r a c t The City University of New York conducted its Youth Transition Demonstration Project from 2003 to 2010. This federally-funded research and demonstration project was designed to help transition-age youth with disabilities receiving Supplemental Security Income (SSI) achieve maximum self-sufficiency. More than 400 youth living in the high-poverty county of Bronx, NY were enrolled in a treatment group and offered a series of interventions, including Person-Centered Planning (PCP). Quantitative and qualitative research methods show that this process was linked to improved educational and employment outcomes for youth. Sixty-five percent of youth enrolled in the project participated in at least one PCP session. Youth from lower-income families were less likely to participate in PCP, as were youth with mood disorders. Youth who did participate in PCP were more likely to hold at least one paid job. Youth focused on relationships, personal strengths and goals during these sessions, which proved an important part of their transition process. Recommendations for educators, service-providers and policy-makers are included for professionals seeking to implement collaborative transition services for youth and their families. © 2010 Elsevier Ltd. All rights reserved.

1. Introduction In 1990, Congress amended the Individuals with Disabilities Education Act (IDEA) to require school districts to provide transition planning for students with disabilities. Statistics make clear the need for transition planning that better prepares students with disabilities for life after high school. In New York, educational attainment and employment rates are much lower for individuals with disabilities. Approximately 60% of individuals with disabilities in New York have a high school diploma or less, compared to 38% of individuals without disabilities (Schrader, Erickson, Vilhuber, & Golden, 2009). The employment rate for individuals with disabilities in New York is just 33%, compared to 72% for people without disabilities (Schrader et al., 2009). Although transition planning is legally mandated, Silverman (2007) examined 264 Individualized Education Plans (IEPs) for transition-age (15–21 years old) students with disabilities in New York City and found that 26% of all school IEPs did not include transition planning. Just 31% of all transition plans included student input, and just 70% of all transition plans included input from parents. Less than 4% of the IEPs indicated that outside agencies would be involved in the transition process. The person-centered planning (PCP) component of The City University of New York's (CUNY) Youth Transition Demonstration ⁎ Corresponding author. Tel.: + 1 646 344 7316; fax: + 1 646 344 7319. E-mail addresses: [email protected] (E.E. Croke), [email protected] (A.B. Thompson). 1 Tel.: + 1 212 794 5773; fax: + 1 212 794 5706. 0190-7409/$ – see front matter © 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.childyouth.2010.11.025

Project (YTDP) was intended to better prepare students with disabilities for employment or further education. PCP was developed in the 1980s as an alternative to a deficit-oriented and bureaucratic model of service delivery for individuals with disabilities. A facilitated process in which an individual with a disability and his or her circle of support are engaged in planning for the future, PCP aims to “listen closely to the hearts of people with disabilities and to imagine with them a better world in which they can be valued members, contribute, and belong” (Holburn, Gordon, & Vietze, 2007). In early writing on the process, Mount (1992) describes the underlying philosophy of PCP as emphasizing youths' unique strengths and abilities, not their disability. Often facilitated through disability-services agencies, PCP allows for a vision of the future that is optimistic, in which the youth will be engaged and integrated in the community. A central tenet of PCP is one of collaboration and parity among decision makers. The youth and his or her family should be empowered, and have control and ownership of the process. Further, PCP is based on a notion that the service delivery system must meet the unique needs of the youth. Bureaucratic structures are challenged and inter-agency collaboration is assumed necessary to help youth achieve their goals. A commitment to the principles of PCP was prevalent throughout all components of YTDP conducted from 2003 to 2010 and funded by the Social Security Administration. The project emphasized selfdetermination for more than 400 transition-age Bronx youth with disabilities,2 working in partnership with parents and youth, and 2 See Table A.1 for more specific age and demographic characteristics of participant youth.

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collaborating with a multitude of agencies to creatively help youth reach their individual goals. The following paper will provide an overview of YTDP, including a history of the program and description of key interventions. The implementation of PCP and quantitative and qualitative findings related to PCP will be discussed in detail. Challenges related to the implementation of PCP will be considered, and recommendations for service providers considering implementation of PCP will be provided. While Mathematica Policy Research is leading a national impact study of the six YTDP sites around the country, the analysis described here represents a local evaluation effort designed by CUNY for the CUNY site alone. 1.1. Project overview CUNY YTDP began in September 2003 through a Cooperative Agreement with the Social Security Administration (12-Y-30007-201). The purpose of the project was to help transition-age youth with disabilities receiving Supplemental Security Income (SSI) achieve maximum self-sufficiency. For the first two years of the project, CUNY ran two pilot cohorts with 84 youth. The “Pioneer” cohort started in May 2004, and the “Pilot” cohort started in May 2005. During these pilot years, interventions were fine-tuned. Between 2006 and 2010, YTDP served three cohorts, including 403 youth, through the national evaluation effort. The program aimed to incorporate best practices for transition services, several of which were identified by Mueller (2002) in a report issued by New York Lawyers for the Public Interest: • Early intervention in the transition process starting at age 16; • Activities that promote student self-determination and selfadvocacy; • Activities that support informed activism by parents; and • Professional development for school and agency personnel. CUNY YTDP developed an intricate intervention model and staffing structure amidst great socioeconomic challenges and a unique cultural context. The Bronx is one of the most disadvantaged urban areas in the country, raising a host of challenges for transition-age youth. High unemployment, low income and education levels, and linguistic diversity characterize this third-most-densely-populated county in the nation (U.S. Census Bureau, 2007) in which 53% of homes speak a language other than English and 87% represent minority groups (U.S. Census Bureau, 2010). In addition to the barriers to successful transition imposed by fractured bureaucracies and service systems, YTDP families in the Bronx faced incarceration, gang violence and economic instability. CUNY YTDP staff tackled needs beyond those of transition services. CUNY was well-positioned to empower families and youth in this difficult environment. The nation's largest urban university, CUNY is comprised of 23 colleges which educate more than half a million students in credit and non-credit programs across the five boroughs of New York City. CUNY's student population mirrors the diversity of the city: CUNY draws students from 205 countries of ancestry, 47% of undergraduates have a native language other than English, and 37% of first-time freshmen are born outside of the United States (CUNY, 2009). Founded in 1847, CUNY has historically educated firstgeneration college students. Located within the University's Central Office of Academic Affairs, the John F. Kennedy, Jr. Institute (the Institute) administered the project. The Institute has much expertise in the disability field and, as a result, was selected by the University to administer the YTDP project. The work of the Institute began in 1989, and includes scholarship programs for frontline workers in the disability field as well as the development and support of academic programs in Disability Studies. The Institute was able to draw on a rich array of existing programs and services throughout CUNY, as well as external resources. The project also benefited from the facilities and other

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resources offered by the two CUNY campuses hosting project services, Lehman (a four-year college) and Hostos (a community college). 1.1.1. “Pioneer” cohort The first cohort of pilot youth was recruited in 2004 from three Bronx high schools in District 75, a self-contained special education district within the New York City Department of Education (DOE). Students and parents were invited to a spring orientation session held at their school site, informed about the program and encouraged to enroll. While all youth were diagnosed with significant developmental disabilities, not all received SSA benefits. The Pioneers were engaged in a Summer Institute in 2004, sessions about SSA benefits counseling, and PCP, for which CUNY engaged nationally-known PCP expert Dr. Beth Mount. Youth also participated in self-determination trainings, crafted through the guidance of Dr. Michael Wehmeyer and facilitated by Lehman College student peer mentors. 1.1.2. “Pilot” cohort In the second year of the pilot phase, CUNY implemented a random assignment process and successfully recruited an additional cohort of treatment-group youth from a list of Bronx SSA beneficiaries. This cohort participated in additional activities like “Freshen Up”, a recreation program at Lehman College on Saturday mornings, and the Summer Youth Employment Program (SYEP), a city-wide program funded by NYC Department of Youth and Community Development (DYCD). 1.1.3. National evaluation cohorts The Youth Transition Demonstration (YTD) national evaluation led by Mathematica Policy Research began in October 2005. Six sites from around the country participated in the random assignment study that examined various models of serving youth with disabilities between the ages of 14–25, including five modified SSI rules (SSA YTD Waivers), which may lead to improved education and employment outcomes: 1) 2) 3) 4) 5)

Student Earned Income Exclusion (SEIE) General Earned Income Exclusion (GEIE) Plan to Achieve Self-Support (PASS) Individual Development Accounts (IDA) Continuing Disability Reviews and Age 18 Redeterminations

The evaluation includes analyses of administrative and survey data, as well as a process analysis. The CUNY site was selected in spring 2006 to participate in the national YTD evaluation. CUNY served three cohorts, including 403 youth, through the national evaluation. These cohorts of youth (named the “Vanguards”, “Navigators”, and “Voyagers”) are the focus of this study and the source of all subsequent data included here. The Vanguards began their participation in CUNY YTDP in October 2006 and completed their participation in May 2008. The Navigators participated in CUNY YTDP from October 2007 to May 2009, and the Voyagers participated from October 2008 to May 2010. A total of 235 youth participated at the Lehman College site and 168 at Hostos Community College.3 Of these, 72 were Vanguards, 155 were Navigators and 176 were Voyagers. Eight participants were dismissed from the project, for reasons such as moving out of the Bronx or incarceration. Twenty-three percent of all participants were Black and 73% were Hispanic. Sixty-nine percent of participants were male. Seventy-seven percent were ages 16 or 17 at the time of enrollment, while 8% were age 15% and 15% were age 18. See Table A.1 for detailed information about participant demographics. 3 The descriptive statistics that appear in this report were generated from Efforts-toOutcomes (ETO), the project's web-based management information system, or from other administrative records.

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While staffing structure varied throughout the project, the Institute employed a Project Director, two Parent Advocates, two Career Development Specialists and two Benefits Advisors to work in the Bronx and implement the CUNY YTDP effort at Lehman and Hostos. Part-time Bronx staff numbered more than 70 at different times during the project. Two central office administrators worked from the Institute's main office in Manhattan. Strong partnerships enabled CUNY YTDP to serve a large number of youth with disabilities. The project worked continually with public and private partners, many of whom were represented on an Advisory Committee which met periodically. Community Resource Mapping activities during summer 2008 provided another formal opportunity for local partners to contribute to YTDP and its future direction. By marshalling available resources, CUNY was able to provide a variety of supports to transition-age youth. At least 20 youth have enrolled in college, mainly at CUNY campuses. More than half (225 youth) participated in paid employment. In each of its key interventions, participating youth showed progress toward the program goal of increased self-sufficiency.

Parents participated in concurrent, bilingual workshops with the purpose of developing advocacy skills and learning about community resources. 1.2.2. Benefits counseling Individuals with disabilities that receive SSA benefits are often concerned that engaging in work activity will result in a loss of benefits. Benefits Advisors bilingual in English and Spanish provided guidance on public benefit programs to youth enrolled in the project and their parents. Main efforts focused on providing counseling about unique SSA waivers available to project participants. One example of these special waivers was the removal of an age limit for SSA's Student Earned Income Exclusion (SEIE). Benefits planning services were offered both as part of the Saturday workshop curriculum and as stand-alone, individualized services. The purpose of the SSA waivers and benefits counseling efforts was to ensure that youth and their families understood the impact of work on their benefits, and were not afraid to begin on the path to employment. Over the course of the project, most participants that engaged in work activity did not experience a reduction in benefits due to the SSA waivers and relatively low levels of total earnings.

1.2. Intervention overview Three sequential cohorts of youth received the 20-month intervention. The following flow chart depicts how enrolled youth moved through the various phases of the intervention model:

To facilitate participation in each phase of the intervention, families received supports such as free food and childcare at workshops, and free MetroCards for the New York City bus and subway system. The majority of service implementation took place on Saturdays. Types of services and their intensity varied, depending on the needs of CUNY YTDP families, who participated based on their own needs, availability and interest. The five key interventions built upon one another and related directly to the project's goals of fostering maximum independence and economic self-sufficiency through improved educational and employment outcomes. CUNY YTDP's major interventions included the following items. 1.2.1. Saturday college program for youth and their parents After enrolling in the program, youth and their families began attending Saturday morning workshops at one of the two on-campus project sites. The sessions included a mix of recreation activities such as sports or drama, as well as self-determination and pre-vocational curricula. These workshops were held for two 10-week semesters on each Saturday (October through December and March through May).

1.2.3. Person-centered planning PCP entails the promotion of self-advocacy on the part of the youth and their parents by identifying educational, career and quality of life goals. This approach is built around the person's own vision of what quality of life means for them. As described by Michaels and Ferrara (2005), “Person-Centered planning is an ideal vehicle for promoting collaboration and problem solving to ensure that transition plans are created that are meaningful and student-centered” ( p. 287). PCP as practiced by CUNY YTDP built upon a participant's skills and abilities, while also focusing the conversation on what the youth would like to achieve in the future. Twice during the intervention model YTDP participants and their families had the opportunity to participate in individual personcentered planning sessions. Person-centered plans visually displayed a comprehensive view of the person, using charts that detailed where the person was and where he or she hoped to be in the future. Next steps were clearly detailed to show how individuals could move from their present situation toward their goals. CUNY YTDP facilitators included many factors in the person-centered plans, including key relationships, home life, work and school activities, community involvement, building competence and improving health. 1.2.4. Summer and after-school jobs CUNY YTDP prepared youth for a summer work experience and assessed their longer-term career interests and goals. After completing the spring Saturday workshops, youth had the opportunity to participate in a paid summer work experience through DYCD's SYEP. In partnering with existing SYEP vendors, YTDP enrolled youth in the program and created job placements for YTDP participants at Lehman College and Hostos Community College in departments such as the Office of the President, Library, campus catering, Adult and Continuing Education and Facilities. CUNY YTDP also provided intensive job coaching and other vocational support services. Between 2007 and 2009, these efforts resulted in more than $270,000 in total earnings for project participants. Approximately 200 youth (50%) from the Vanguard, Navigator, and Voyager cohorts participated in SYEP, earning on average more than $900 over the course of the summer. Approximately 70 youth (17%) held other types of paid jobs during the project. 1.2.5. Referrals and follow-up During the follow-up phase, youth were eligible to receive 10 additional months of more individualized services, including but not limited to: career development support, after-school jobs, academic

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supports, continuing education courses, benefits counseling, and referrals to appropriate services. The focus during this phase was on empowering youth to apply the self-determination and advocacy skills they had developed through the previous interventions. Almost 80% of all participants received at least one referral. 2. Implementation of person-centered planning Anne Gordon and Dr. Peter Vietze, experts in PCP from the New York State Institute of Basic Research in Developmental Disabilities, assisted CUNY YTDP in developing its intervention and training staff. Their 2007 book Person-Centered Planning Made Easy was distributed to project staff and used as a text for training. Dr. Beth Mount, a nationally-known expert on PCP, spoke to families about the intervention several months before they participated in PCP. Full and part-time staff met for several half-days of training. Teams were formed, and staff was prepared to conduct PCP sessions in English or Spanish, depending on the needs of the family. CUNY YTDP's person-centered plans visually displayed a comprehensive view of the person. See Appendix B.2 for an example of the charts and summary sheets used during PCP. Follow-up PCP sessions were conducted after the summer job experience. Staff encouraged youth to consider shifts in personal goals in light of their paid work experience. For project evaluation purposes, an emphasis was placed on collecting and recording data about each PCP session. Staff also needed a vehicle for information about students' work goals as they developed SYEP job placements. Fields were created to capture pertinent information within ETO. Staff recorded basic details about the session, including who attended, where the session took place, whether a language translator or sign interpreter was present, and how long the session lasted. As discussed during the session, information about the youth's relationships, interests, abilities, educational and employment experiences, and goals was also recorded. Using the database resulted in standardization of the PCP process, as all facilitators were expected to gather similar types of information. Recording details of the session in the database also allowed staff to print and share a summary of the session with families and other service providers. For Spanish-speaking families, summaries were translated into Spanish and shared. Based on ETO data, typically at least one family member attended the PCP with the youth. In some cases youth had two or three family members in attendance. Approximately two staff also attended the session, including a facilitator and recorder. On average, the session lasted approximately 90 min, and youth specified approximately four goals. Examples of educational goals identified by youth include graduating from high school, improving their reading skills, finding a tutor, passing an exam, or enrolling in college. Examples of personal goals identified by youth include purchasing a cell phone, finding a girl friend, attending church, finding an apartment, or obtaining a driver's license. Youth also identified employment goals such as obtaining a summer job, finding a job coach, or starting a business. Throughout the course of the program, the PCP intervention was implemented as originally planned and intended. Project staff considered and piloted the use of laptops during PCP sessions to record data. However, staff believed that it was important to continue using charts taped to the wall to visually represent what was discussed. There was a concern that using laptops would create a more formal and less collaborative environment. Although the model was implemented consistently from year-to-year, there was variation between the winter and summer sessions of PCP. The summer session of PCP was conducted as a follow-up session, providing an opportunity for staff to check-in with youth and their families to see if anything had changed and to help youth consider the progress they were making toward their goals.

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3. Materials and methods The authors of this report administered CUNY YTDP, and utilized program administrative records as well as their own experience to begin assessment of the implementation of PCP. Quantitative data were gathered from ETO, a web-based database used as the primary management information system. The database contained detailed demographic and participation data for all participants. Full and parttime staff recorded data on a daily basis, tracking participation in each component of the intervention model, interactions with youth and families, job placements, education placements, detailed information about each PCP session, and referrals. ETO data were analyzed for the 403 participants that enrolled in the YTDP program between 2006 and 2008. Data from ETO allowed for the analysis of participation in PCP for various demographic groups. Qualitative data were also collected. During the summer of 2009 five PCP sessions were observed. Four of these sessions were conducted in English and one was conducted in Spanish. Detailed field notes were taken for each of the observed sessions. All sessions were audio recorded and the four sessions in English were transcribed. Following two of the PCP sessions semi-structured interviews were conducted separately with the youth participant, the family member who attended the session, and the staff member who facilitated the session. These interviews were also audio-recorded and transcribed. Questions for youth and parents focused on perceptions of the PCP experience and whether the PCP session had helped them plan for the future. Staff was asked to consider the role of PCP within the overall intervention model, and how PCP had affected them professionally and personally.

4. Results 4.1. Quantitative Analysis of person-centered planning Approximately 63% of all youth (n = 254) participated in the winter session of PCP, while 31% (n = 125) participated in the summer PCP session (Table A.3). PCP participation was comparable or higher than participation rates for other components of the intervention model. For instance, 63% of youth and 56% of parents attended at least 6 Saturday workshops (approximately 30% of all workshop sessions). Forty-one percent of youth and 36% of parents attended at least 12 workshops (approximately 60% of all workshop sessions). In total, 65% of participants participated in PCP during the winter or summer session, while 29% participated in both PCP sessions (Table A.4). Using a chi-square analysis, rates of PCP participation were significantly different by age, cohort, and household income. Youth who were age 18 at the time of program enrollment were less likely to participate in PCP compared to younger participants. Members of the Navigator cohort were less likely to participate in both PCP sessions compared to the Vanguard and Voyager cohorts. Youth from families with household income under $25,000 were also less likely to participate in the intervention compared to youth from more economically advantaged households. Rates of participation in PCP were similar across various disability categories. However, youth with mood disorders were not as likely to participate in PCP compared to other youth. Youth who participated in PCP were more likely to hold at least one paid job compared to youth who did not participate in PCP (Table A.5). A total of 56% of all participants (n = 227) held at least one paid job during the course of the project. Of those that participated in the winter session of PCP, 76% held at least one paid job. Just 23% of youth that did not participate in PCP held a paid job that is recorded in ETO.

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4.2. Qualitative analysis of person-centered planning Drawing on the observed PCP sessions and interview data4 the following themes emerged. 4.2.1. Relationship building PCP fosters relationship building and improved communication among staff, youth, and their family members. According to one staff person, meeting individually with youth allows staff to develop “a snapshot of their lives.” The session allows the youth to fully explore and communicate about key aspects of their life, including their interests, abilities, relationships, education and employment activities, and goals for the future. According to one staff member, PCP allows staff and parents to gain, “knowledge and information that usually teenagers don't want to share.” Parents of youth with disabilities report that PCP provides an opportunity to learn more about their child. Kevin, an 18-year old student, indicated that he was interested in auto repair, something that was a surprise to his mother. During the follow-up PCP session, Kevin's mother reported that the project had resulted in improved communication between them. “We sit and we talk now. Yes, we do. Before he didn't want to hear it… Now we actually talk like two adults.” Based on observations and interview data, the evaluation team found that at its core, PCP was a respectful activity, allowing youth and their family members to express themselves. By engaging families in PCP, we helped to ensure that they felt respected and understood. Kevin's mother indicated her appreciation for the project. She said, “… they take time to listen. You don't get that. You do not get that everywhere.” We believe that including PCP as one of the first components of the intervention model was helpful. These personalized sessions allowed a collaborative relationship to form between staff, youth, and their families. Staff may build on the information gained and the relationship fostered during the PCP session to provide better services. For example, Career Development Specialists were able to more effectively place youth in summer work experiences based on their understanding of the youth's personality and interests. Project staff shared the PCP with school counselors so that school staff could use the information to facilitate better transition planning. 4.2.2. Focusing on strengths A goal of the PCP process is to focus on youths' strengths and abilities. Staff took time to point out strengths of the youth they have observed, and encourage youth and their parents to consider the youth's abilities. In observed PCP sessions, some youth were shy about discussing their abilities. With some probing, they realized all the things they were good at doing. For instance, youth described being able to cook breakfast, take care of animals, draw, or care for younger siblings. This component of the PCP was intended to help youth think about their abilities in the context of possible activities they could pursue in the future, or abilities they may want to develop more fully in the future. Observations revealed that focusing on youth strengths also creates a supportive, confidence-building environment. For instance, Kevin's PCP facilitator raved about his summer work experience. She said, “I'm going to just congratulate you…on an incredible, incredible… You have done everything you're supposed to do. You've been absolutely magnificent. You were where you're supposed to be. Your evaluations are incredible.” In response, Kevin's mother said, “I'm proud of him. I am very proud of him. I mean, getting up, coming here and not even complaining, you know… So this program really worked out. It really did.” For both youth and parents, it is crucial to operate 4

See Appendix B.1. for interview protocol.

from a strengths-based perspective so they move forward positively toward their goals. 4.2.3. Goal setting Staff indicated that PCP allows for an opportunity to provide direction for youth and to help them “put their priorities in order.” For instance, youth may indicate that they would like to attend college but have not yet made plans to take the SAT or apply for tuition funding through the state vocational rehabilitation provider. Other youth may express a desire to work, but must first learn to travel independently. The PCP allows youth to develop a plan that will allow them to pursue their goals. Parents view PCP as a strategy that may help their child become more independent. The grandmother of 16-year-old Shayla stressed the importance of independence, “because I'm not going to be here always.” She went on to say, “…ain't nothing like being independent, 'cause I'm telling you, you cannot depend on others.” Prior to participating in PCP, many youth have never articulated their goals or discussed goals for their future with parents. Shayla's grandmother indicated that Shayla had never before talked about her goals at home. The concept of “goals” may be difficult or frightening. For instance, while interviewing Shayla, the interviewer noticed that she did not mention specific goals during the PCP. When asked, “Do you have goals for your future?” she surprised the interviewer by saying that no, she does not have goals. She provided a long explanation about how she likes to go with the flow, and does not want to be stressed by studying all the time, with no time for herself. It seemed that Shayla did not want to get swept-up in something that overwhelmed her. She had made the decision not to specify goals, and staff surmised this might stem from a desire to preserve her childhood or avert failure. A hesitancy to articulate goals also emerged from the interview with Kevin. He indicated that he did not like talking about his goals because, “I don't know what I should go for. Some people try for things their whole lives and never make it.” The concept of goals for youth with disabilities may be especially challenging because they may lack self-confidence, or feel that they have not been successful within the education system. Kevin was not really sure college was the right path for him, but felt pressure because it seemed to him that everyone else was pursuing college as the next step. Since a central component of PCP is goal setting, project staff needs to be aware of conflicting emotions youth may have about planning for their future. For youth who are uncertain of their long-term goals, it may be best to focus on short-term objectives. This strategy keeps things concrete and from becoming too overwhelming. Staff may need to be quite directive. For instance, Kevin indicated that he would like to attend college, but seemed hesitant and unsure. The staff facilitator suggested that Kevin meet with his high school guidance counselor to determine whether he was on track to graduate. She also suggested that Kevin schedule an appointment with her to speak in more detail about educational options. Kevin and his mother agreed on these next steps. 5. Discussion and recommendations 5.1. Discussion of challenges of person-centered planning Coordinating PCP for hundreds of youth required intensive staff effort. In order to achieve adequate participation rates staff worked to schedule PCP at convenient times. Families received reminder phone calls, and those who missed their session were given the opportunity to reschedule. Recording details of each PCP session in ETO required substantial amounts of staff time. Approximately 30% of project families spoke Spanish at home and required bilingual staff

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to facilitate the PCP session. All PCP information was entered into ETO by staff in English, and Spanish-speaking families received a Spanish translation of the PCP which required additional time to produce. The project had difficulty engaging all student groups equally in PCP. Youth who were older and from families with lower household incomes were less likely to participate in PCP. It is possible that older youth were less willing to engage in the program, or had already developed plans for the future. Although the project offered free metro cards for the New York City transportation system and food at most project activities, families that faced particularly difficult financial circumstances were still less likely to attend. Project scale-up also presented challenges that impacted PCP participation rates. O'Brien, O'Brien, and Mount (1997) cautioned against what may happen when PCP is scaled-up in such a way that the original intent of the process is lost. “Mindful work involves overcoming a sense of drudgery and dread at the numbers of unfinished plans and being alert to organize concerted action in situations where real change can happen” (O'Brien et al., 1997). Certainly, YTDP staff felt pressure to complete as many plans as possible in a short period of time. The development of a web-based data entry form to capture details from each PCP further contributed to standardization of the process, and possibly resulted in some loss of personalization. The effect of project scale-up on PCP is evident in the lower participation rates for the second cohort, the Navigators (see Table A.4). Project staff believes that a lack of capacity contributed to lower participation rates. For example, the first cohort of youth had a total of 72 youth, while enrollment more than doubled for the Navigator cohort. Project staff had to work simultaneously on enrollment of the third and largest cohort and also on completing follow-up PCP sessions for the Navigators. As a result, just 13% of Navigators participated in both PCP sessions, compared to 32% of Vanguards and 41% of Voyagers. Evaluators observed that some PCP sessions were facilitated more effectively than others. Some staff facilitated the session in a more scripted way, guided more by the data entry form than by responses of the youth. The most adept facilitators effectively probed for more information, clarification, and offered suggestions and insights. Effective facilitators focused their attention on the youth, making good eye contact with the youth throughout the session. Staff indicated that in some instances it was difficult to find the right balance between involving the parent, while also maintaining focus on the youth. Some parents were dominating during the session, or influenced the way the youth responded. It was also important to be encouraging and positive, and to present information in a nonthreatening way. One staff member indicated that she had grown professionally while learning to facilitate PCPs. She felt that her public speaking skills had improved, and that she had learned to pick up on cues and share insights. Staff experienced stress as they encountered families that dealt with significant challenges. One staff person described PCP by saying, “I have to say that at times it has given me great pleasure because of these success stories, and at times it breaks my heart because I know that there are true limitations, barriers that will never be broken down.” Many serious issues arose during PCP sessions. Families dealt with domestic violence, poverty, housing issues, drug and alcohol addiction, and gang violence. Providing ongoing support for youth and their families to achieve the goals articulated during PCP was a significant challenge. PCP was a first step, allowing staff to get to know the youth and their family and develop an understanding of the youth's needs and desires. However, there was much more work that needed to be accomplished. The webbased database was a crucial tool used to track next steps and achievements for youth. Following the winter session of PCP, the project engaged youth in services for approximately 15 more months. During this time, staff

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continued to work with the youth to develop self-determination and pre-employment skills during the spring Saturday workshops, support the youth in a paid summer employment experience, and assist the youth in accessing other community services and improved educational opportunities. At the follow-up PCP session staff often saw that the youth had made great strides. One staff commented, “In this short time, you figure six months, the changes and the advances and the awakening that happens is amazing.” However, some youth did not participate in the follow-up PCP session because they were unable or unwilling to participate, and there was not sufficient time to track progress for every youth toward each of their goals. Staff indicated that a third PCP session would be helpful to ensure that youth continued on track, because “we never have closure.” Although intensive supports were available over a 20-month period, ongoing support may have resulted in better outcomes for youth. Project staff hope that by participating in PCP, many families were able to gain valuable experience planning for the future.

5.2. Recommendations • CUNY YTDP believes that transition planning for youth with disabilities should begin earlier than age 17 or 18. PCP participation rates were lower for older youth, suggesting that younger individuals may be more receptive to the intervention (Table A.4). Conducting PCP earlier provides youth and their families with more time to plan for the future, and to ensure they are on track with high school course taking, college preparations, and vocational training pathways. • It is important to adequately prepare youth and their families for PCP. For example, project staff should explain the underlying philosophy of PCP, emphasizing that the purpose is to help youth plan for their future. Families and youth should feel empowered to participate as equal partners, and youth should be encouraged to speak about what they want for their future. CUNY YTDP invited Dr. Beth Mount, a nationally-known expert on PCP, to speak about PCP with families before the intervention began. Families were also given templates of letters to invite the relatives and friends who comprise the youth's circle of support to his/her PCP session. Parents and youth needed to be able to explain the process and prepare for this new experience, which differed from school IEP sessions where youth were often not questioned or included. • Initial and ongoing training and support for staff facilitators is crucial. In addition to learning to appropriately facilitate PCP sessions, project administrators should be aware of the personal toll PCP may have on staff. • It is recommended that the PCP intervention be included as one of the first components of the intervention model. PCP aids in the development of a more collaborative relationship between staff, youth and their families. Staff may build on the information gained and the relationship fostered during PCP to provide better services. • PCP works best when the abilities and gifts of each youth are emphasized. Operating from a strengths-based perspective allows youth and their families to move forward positively toward their goals. • For youth who are unsure of their long-term goals, it may be best to focus on short-term objectives. For example, youth may be encouraged to schedule a meeting with their high school guidance counselor to explore their options, or to ensure they are on track to graduate. • Ongoing evaluation of PCP is likely to result in improved outcomes. It may be helpful to develop a project database that will allow administrators to track participation in PCP for different student groups, sites or cohorts. Staff should be encouraged to reflect about the quality of the intervention and consider strategies for improvement. Families should be encouraged to provide feedback.

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• Careful consideration must be given to the PCP follow-up process. We believe that participating in PCP is empowering for youth and their families, but ongoing collaboration with youth and their families is crucial. Youth participation in more than one PCP session means that staff attention is directed anew to a list of action items previously outlined. This, or a family's revisiting of an original PCP, helps ensure that stakeholders continue to make progress toward a youth's life goals. • In order to help youth reach their unique goals, interagency collaboration is essential. Projects administering PCP should broker partnerships with other service providers in the community, and establish referral processes for connecting youth with supplemental services that will help them reach their goals. Sharing the PCP with the youth's school guidance counselor or transition coordinator may also be helpful. 6. Conclusion Person-centered planning played a central role in CUNY's Youth Transition Demonstration Project, requiring intensive staff effort. The opportunity for youth to exercise self-determination proved a powerful expression for both them and their parents, and was a philosophy around which the entire project revolved. Many YTDP families had not experienced this constructive, engaged approach to thinking about the young person's future. The individualized focus of PCP allowed staff to effectively collaborate with each youth and family to help them reach their own unique goals. While questions remain around standardization of this intervention and conducting it at scale, staff worked hard to balance limited capacity with providing the full experience of PCP to more than 250 youth with disabilities. Acknowledgments This publication was made possible by a grant from Social Security. The contents of this publication are the sole responsibility of the authors and do not represent the official views of Social Security. Appendix A Table A.1 CUNY youth transition demonstration project, participant overview. Source: CUNY Youth Transition Demonstration Project, ETO database. Total

Total Race/ethnicity Black, non-Hispanic Hispanic Other, non-Hispanic Gender Female Male Disability ADD/ADHD Autistic disorders Learning disorders Mental retardation Mood disorders Speech and language delays Other Cohort Vanguards (2006–08) Navigators (2007–09) Voyagers (2008–10) Site Hostos Community College Lehman College

N

%

403

100

91 296 16

23 73 4

124 279

31 69

46 20 52 88 15 43 139

11 5 13 22 4 11 34

72 155 176

18 38 44

168 235

42 58

(continued) Table A.1 (continued) Total N Age at enrollment 15 16 17 18 Household income Less than $10,000 $10,000–$25,000 $25,000–$50,000 $50,000–$75,000 Don't know Head of household graduate high school Yes No Don't know Language spoken at home English Spanish Other

%

31 121 189 62

8 30 47 15

153 165 45 4 36

38 41 11 1 9

174 204 25

43 51 6

267 125 11

66 31 3

Table A.2 Summary of person centered planning intervention. Source: CUNY Youth Transition Demonstration Project, ETO database. Average length of PCP session (in minutes) Number of family members attending PCP session 1 2 3 4 Total number attending PCP session, including participant, staff, and family 2 3 4 5 6 More than 6 Number of goals identified 1 2 3 4 5 6 or more

90 16% 55% 24% 6% 7% 17% 32% 25% 14% 5% 1% 10% 32% 24% 19% 14%

Table A.3 Participation rates, by intervention. Source: CUNY Youth Transition Demonstration Project, ETO database. % Attended winter PCP Attended summer PCP Attended both PCP sessions Held at least 1 paid job Youth attended at least 6 workshop sessions Youth attended at least 12 workshop sessions Parent attended at least 6 workshop sessions Parent attended at least 12 workshop sessions

63 31 29 56 63 41 56 36

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Appendix B.1. PCP Interview Protocol

Table A.4 Participation in PCP, by demographic characteristics. Source: CUNY Youth Transition Demonstration Project, ETO database. N

Total Race/ethnicity Black, non-Hispanic Hispanic Other, non-Hispanic Gender Female Male Disability ADD/ADHD Autistic disorders Learning disorders Mental retardation Mood disorders Speech/Language delays Other Cohort Vanguards (2006–08) Navigators (2007–09) Voyagers (2008–10) Site Hostos Community College Lehman College Age at enrollment 15 16 17 18 Household income Less than $10,000 $10,000–$25,000 $25,000–$50,000 $50,000–$75,000 Don't know Head of household graduate Yes No Language spoken at homeb English Spanish

Attended both Attended either Did not P value attend winter or winter and PCP summer PCP summer PCP

403 29%

36%

35%

91 32% 296 28% 16 25%

40% 35% 44%

29% 37% 31%

0.649

124 31% 279 28%

33% 38%

36% 34%

0.634

46 20 52 88 15 43 139

28% 35% 31% 34% 13% 22% 39%

35% 30% 35% 36% 27% 43% 26%

37% 35% 35% 30% 60% 35% 35%

0.332

72 32% 155 13% 176 41%

35% 45% 30%

33% 42% 29%

b0.0001

168 31% 235 27%

38% 36%

32% 37%

0.497

31 121 189 62

29% 33% 40% 35%

29% 31% 33% 52%

0.007

153 25% 165 33% 45 36% 4 0% 36 19% high schoola 174 30% 204 27%

37% 36% 44% 75% 22%

39% 30% 20% 25% 58%

0.025

36% 36%

34% 37%

0.555

267 31% 125 22%

35% 39%

34% 38%

0.271

42% 36% 27% 13%

Table A.5 Relationship between PCP participation and paid work experience. Source: CUNY Youth Transition Demonstration Project, ETO database.

Participated in PCP (winter session) Yes No

Questions for youth 1. Did you like this meeting? Did you like talking about yourself and your goals? 2. How do you think this meeting can help you? 3. How did it make you feel to talk about all the friends you have, and about all the things you're good at? 4. Has talking to us today helped you have a better idea of what you want to do after high school? 5. Do you remember doing this for the first time in January, with the charts on the wall? 6. Do you like coming here? Why? Why not? What do you like most? 7. Do you feel like coming here has helped you? How? 8. Can you tell me a story of something that happened here?

Questions for parent

Note: PCP was first offered to program participants during the winter, following the fall Saturday workshop program. A follow-up PCP session was offered approximately 6 months later during the summer. Most participants that attended only one PCP session attended the winter session. a “Don't know” category not included. b “Other” category not included.

Full sample

817

Total

Held at least 1 paid job

Did not hold at least 1 paid job

N

N

%

N

%

403

227

56

176

44

254 193 76 149 34 23 Chi-square: p b 0.0001

61 115

24 77

1. Did you find this meeting helpful? How is it helpful? 2. Did you like hearing about your child and his/her goals? 3. Was there something you wanted to talk about that we didn't talk about? 4. Have you ever heard your child articulate his/her strengths, friends, goals after high school, etc.? 4. For you, what's the purpose of PCP? 5. Did you learn anything new about your child? 6. Do you have a better idea of the steps s/he needs to take to achieve her/his goals? Do you think s/he can do it? 7. Do you think you have the help you need to achieve your goals? 8. Have you seen your child change as a result of their participation in this project? 9. Do you like coming here? Why? Why not? What do you like most? Least? 10. Do you feel like coming here has helped you? How? 11. Can you tell me a story of something that happened here?

Questions for staff 1. Do you think it's important to ask about the things we ask about, like social supports, interests/abilities, current status, plan/goals, etc.? 2. What is one thing we don't typically ask about that you think we should ask about? Or, is there anything you typically insert as a question that isn't on the question list? 3. What is most challenging about facilitating the PCP? 4. What do you think families gain by doing the PCP? 5. What do you think families struggle with most during the PCP? 6. How has facilitating PCPs impacted you personally or professionally? 7. Do families receive the support they need to realize the goals articulated in PCP? 8. What are the differences between PCPs in the winter and summer? 9. How do you think the PCP process could be improved? 10. How/where do you think PCPs fit in with our other YTD interventions? 11. Do you have a favorite PCP story?

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Appendix B.2. Example of PCP summary sheet and charts

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References The City University of New York (2009). About CUNY. Retrieved December 4, 2009, from. http://cuny.edu/about/index.html. Holburn, S., Gordon, A., & Vietze, P. M. (2007). Person-centered planning made easy. Baltimore, MD: Paul H. Brookes Publishing Co., Inc.. Michaels, C. A., & Ferrara, D. L. (2005). Promoting post-school success for all: The role of collaboration in person-centered transition planning. Journal of Educational and Psychological Consultation, 16(4), 287−313. Mount, B. (1992). Person-centered planning: Finding directions for change using personal futures planning. New York: Graphic Futures. Mueller, R. (2002, September). Missed opportunities: The state of transition services for youth with disabilities in New York City. Retrieved from. http://www.nylpi.org/ images/FE/chain234siteType8/site203/client/DLC%20-%20NYLPI%20Transition% 20Report.pdf. O'Brien, C. L., O'Brien, J., & Mount, B. (1997). Person-centered planning has arrived… or has it? Mental Retardation, 35, 480−484. Schrader, S., Erickson, W., Vilhuber, L., & Golden, T. (2009). New York state disability and employment status report. Retrieved from. http://digitalcommons.ilr.cornell. edu/cgi/viewcontent.cgi?article=1282&context=edicollect. Silverman, M. (2007, September). Transitioning to nowhere: An analysis of the planning and provision of transition services to students with disabilities in New York City. Retrieved from. http://www.advocatesforchildren.org/pubs/Transitioning_to_ nowhere_final_report.pdf. U.S. Census Bureau (2007). Table B-1. Counties − area and population. Retrieved from. http://www.census.gov/statab/ccdb/cc07_tabB1.pdf. U.S. Census Bureau (2010). State and county quick facts: Bronx county, New York. Retrieved July 21, 2010 from. http://quickfacts.census.gov/qfd/states/36/36005. html.