Boston CBI 2002 Proceedings “Coordination and Management of Supports and Services for Individuals with Disabilities from Secondary to Postsecondary Education and Employment” National Center on Secondary Education and Transition Office of Special Education Programs National Center for the Study of Postsecondary Educational Supports National Institute for Disability and Rehabilitation Research Institute for Community Inclusion December 9th & 10th, 2002 Boston, Massachusetts The following document contains the proceedings from the “Capacity Building Institute on Service Coordination and Management of Supports” held on December 9 & 10, 2002 in Boston, Massachusetts. A broad base of local and national entities sponsored the Institute, including the National Center on Secondary Education and Transition (NCSET) at the University of Minnesota, the National Center for the Study of Postsecondary Educational Supports (NCSPES) at the University of Hawaii, and the Center on Community Inclusion at the University of Massachusetts. The Institute covered a broad range of topics such as: * Trends, Practices and Challenges in Service Integration and Employment * Supporting Individuals with Disabilities in Postsecondary Education * Critical Issues Related to Service Coordination and Management of Supports * Creating Changes through Effective Statewide Collaboration * Integrating Department of Labor Resources * Strategic Alignment of Community Resources * Integrating Service Systems and Transition * Emerging Practices in Service Coordination/Case Management * Person Centered Planning and Collaborative Supports for College Success * A Family Perspective on Service Coordination and Integration During the Institute, a diverse group of individuals from across the country representing many different disciplines came together to share and discuss strategies that support improved transition from secondary school to postsecondary education and employment for youth with disabilities. Participants had the opportunity to discuss presentations and related topics, develop problem-solving strategies to bring back to their respective communities, and to identify policy recommendations. These Proceedings reflect the content and the rich discussions that occurred over the two days of the Institute. To access these Proceedings online, or for more information about future Institutes or about the Post-Outcomes Network of the National Center on Secondary Education and Transition, please go to the web at www.ncset.hawaii.edu. To obtain alternative formats of these Proceedings or to obtain copies of speaker papers, please contact: Velina Sugiyama, Administrative Assistant, Center on Disability Studies, University of Hawaii at Manoa, 1776 University Avenue, UA 4-6, Honolulu, HI 96822. Tel 808-956-5688. Email: velina@hawaii.edu. Thank you to all who participated! Debra Hart Education Coordinator, Institute for Community Inclusion, University of Massachusetts, Boston Robert A. Stodden, Ph.D., Director, and Megan A. Conway, Ph.D., Technical Assistance Coordinator, Center on Disability Studies, National Center for the Study of Postsecondary Educational Supports Capacity Building Institute Service Coordination and Management of Supports December 9 & 10, 2002 Boston Massachusetts Keynote Speakers Service Integration: Trends, Practices and Challenges from a Systemic Perspective William Kiernan, Director, Institute for Community Inclusion and the National Center on Workforce and Disability, University of Massachusetts, Boston Supporting Individuals with Disabilities in Postsecondary Education Robert Stodden, Director, Center on Disability Studies and the National Center for the Study of Postsecondary Educational Supports, University of Hawaii, Manoa Overview of Critical Issues Related to Service Coordination and Management of Supports in Secondary, Postsecondary Education and Employment Teresa Whelley, National Center for the Study of Postsecondary Educational Supports, Center on Disability Studies, University of Hawaii, Manoa Debra Hart, Institute for Community Inclusion. University of Massachusetts, Boston Discussion I: Partnerships and Interagency Collaboration Virginia's Higher Education Leadership Partners (VA-HELP): Creating Changes through Effective Statewide Collaboration Elizabeth Getzel, RRTC on Workplace Supports, Virginia Commonwealth University, Richmond, Virginia Integrating Department of Labor Resources David Hoff, National Center on Workforce and Disability, Institute for Community Inclusion, University of Massachusetts, Boston Rochelle Hagler and Paula Weiss US Department of Labor, ETA, Office of Youth Services and Job Corps Discussion II: Strategic Alignment of Community Resources Mary Mack, Associate Director, National Center on Secondary Education and Transition, University of Minnesota, Minneapolis, Minnesota Kelli Crane, Program Manager, TranCen, Inc., Maryland Discussion III: Integrating Service Systems at the Point of Transition Richard Lueking, TransCen, Inc., Maryland Discussion IV: Person Centered Planning and Collaborative Supports for College Success & Emerging Practices in Service Coordination/Case Management - Microboards, Service Brokering, Individualized Funding, Person Centered Planning Person Centered Planning and Collaborative Supports for College Success Cate Weir, Institute on Disability, University of New Hampshire Emerging Practices in Service Coordination/Case Management - Microboards, Service Brokering, Individualized Funding, Person Centered Planning Joe Marrone, Center on State Systems and Employment Luncheon Keynote: Role of Families Richard Robison, Federation for Children with Special Needs Overview Postsecondary outcomes for youth with disabilities are discouraging and, as such, continue to be a high priority for policy makers, agency administrators, practitioners, employers, students and their families. The National Capacity Building Institute held in Boston on December 9-12, 2002, was designed to explore challenges to postsecondary outcomes that are related to the coordination and management of supports and services. Participants from across the country came together to discuss how schools, adult agencies, and postsecondary education institutions should improve service delivery and supports to ensure better outcomes for young adults with disabilities when they leave high school. Presentations highlighted legislation, programs, and emerging promising practices on the integration of service delivery for youth with disabilities. An overview of the subject included national issues currently facing students and current legislation supporting improved integrated service delivery and outcomes for youth. The four topics covered in more depth were: collaboration and forging partnerships; identifying, connecting and integrating existing resources (i.e., resource mapping and alignment); promising practices and examples for cost-sharing and collaboration among agencies to improve outcomes for youth; and the individual perspective on how to create and maintain ongoing support. Following each topical presentation, discussion groups distilled the main points and made recommendations for further policy, practice and research. Four common themes emerged from all seven discussion groups throughout the two days: 1. Communication among schools, agencies, students, and families - A big disincentive to communication and collaboration is the commonly expressed feeling that there is already "too much on one's plate," which leads to an unwillingness to do more, especially if no positive outcomes result. 2. Inadequate collaboration among school districts, the adult service system and higher education. 3. The need for student empowerment, advocacy, and self determination - As students and their families learn more about resources and supports available to them, they must also learn effective ways to ask for and receive what they want to further their educational, career, and community living objectives. 4. Clarification of the role of families as young adults prepare for and participate in adult life. Communication for Students, Families and Teachers Communication is lacking in secondary and post secondary settings, at school, college, and work, and at local, state and federal levels. Students and families are not getting the information they need to make informed decisions about the future. Interagency and educational teams should consider all areas of a person's life, including transportation, safety, natural supports for employees and employers, as well as the task of getting a job (only one piece of information). It would be helpful if there was an array of available services, but there is a "disconnect" about getting the right information, accessing these services and then letting the right people know about the services. Generic community resources are underutilized. Parents and educators feel that high school students are not ready to hear about services, nor do they understand what they need. Many school personnel feel that "the system" is difficult to navigate and too hard for students to access. Job Corps and One Stops are not well utilized by students. Few students have received detailed information about their services. A few communities use One Stops, but mainly for students without disabilities. Special educators rely on disability-related services and rarely go elsewhere. Adult service personnel don't hear about generic youth services. Others say that special education services are so specialized that they feel generic services would not be effective. Additionally, there is the perception that special education already has a lot of dedicated resources and that, by delving into other services, students are taking more than their share. More communication is needed in schools, in agencies and across all areas to share pertinent information, make informed decisions, and eliminate misconceptions about resource allocation. Lack of Collaboration and Coordination Among Schools, Families and Agencies Many of the discussion groups felt there was a need for a unified system to connect systems and services, coordinate services, and make information accessible to everyone. Comments included: "Too much interruption of services," and "Need to unify resources and publicize them so people can access them in a variety of formats." Coordination across transition outcome areas is poor. Most people report that no one wants to take responsibility to coordinate everything. Students' transition plans must be connected to their proposed ideas about adult outcomes. They must be connected to the academic subjects that they learn in school. Some type of work and school- based learning plans and student portfolios linking academic outcomes and "real world" outcomes must be created and utilized for transition age youth. One-Stop Career Centers generated a great deal of interest and hope. One-Stops could take responsibility for coordinating and bringing various parties together to serve students while they are still in school and after they leave. Money is available to students through One-Stops. One-Stops could be the unifying place to coordinate services for students, while students are in high school and as they make the transition out of high school. Currently, in theory, this is what One Stops seem to be proposing. What they are actually doing varies in each office. Do they have the supports and information they need to carry this out? How can schools and adult agencies help make this work? The "Ticket-to-Work" concept sparked many people's interest. Students controlling their own money would be another way to coordinate services. The interaction between state and local agencies is sporadic at best. There are small pockets of communities that use workforce investment funds for various programs and internships. Some communities meet monthly to discuss student career goals and other issues. One community secured a paid, after-school position through the mayor's office, which demonstrates a creative, local level response to student issues. Due to financial constraints, many communities are reluctant to contribute to programs. Lack of information and communication and politics/bureaucracy between state and local levels play a role in poor interactions. One person reported that "there is a veneer of organization, but it is up to the individual community to make it happen." There is clearly a need for generic and specialized services and supports to come together to serve all youth more effectively. The declining economy is also a barrier to collaboration. There are fewer jobs and an increasing demand for additional postsecondary services, thus, a growing need to do more with fewer resources. In the face of such overwhelming odds, people are unwilling to come together to help each other out and to share resources. Better collaboration and additional/shared resources are needed to meet student needs. Guidelines to help groups understand state agency eligibility criteria and service provider roles, as well as available resources, might assist in streamlining the transition process. A common suggestion was to establish transition specialists, based in both schools and provider agencies, who could facilitate information and resource sharing among state agencies for more comprehensive, efficient service delivery to students. This specialist would identify issues and concerns and attempt to build up community capacity to deal with these challenges in constructive ways. State money must be allocated to fund these positions in each high school. Transition specialists must share their experiences and problem-solving expertise with each other to help develop the seamless delivery of services. As one participant commented, "Why do we expect individuals with disabilities to be done with transition by age 22?" School personnel believed that collaborating with adult agencies would help make smoother transitions for students, stressing the seamless transition and integrated service angle. Others, after hearing Dr. Lueking's presentation, saw this as "do-able" - that adult service providers and schools can and should work together because the outcomes for students would be more positive. Student Advocacy Due to lack of coordination and communication on transition issues, students must learn on their own about the transition process and how to get the services they need. They must be able to ask critical questions to find out what they don't know. Students need to be taught skills to learn how to advocate for themselves. Adults need to step back and allow students to make their own decisions. Students don't know what to expect and how to prepare. Many teachers don't know how to help prepare students for transition. It is clear that self-advocacy skills must be taught early. Families also need to know more and to advocate more effectively, both for themselves and for their children. Parents may need some support in letting agencies know their needs. Families must understand the basics, such as the difference between entitlement and eligibility. Parents have questions that are not getting answered and they don't even know who to ask. One comment from a parent was, "After high school, then what? Who can we go to for help?" Students with disabilities must have college as an available resource and an avenue to further their education. Students without disabilities have the "luxury" of attending college to find out what they want to do. All students should be able to have this opportunity. They must be able to "come through the front door," rather than through continuing education or auditing a course. Students must be able to have the option to decide whether college will help get the jobs in which they are interested. With the changing labor market, students will need certificates to get the jobs they want. A high school education is not enough. Colleges must be seen as resources for all. They can provide job training opportunities for students. Students may need some type of individual brokering in order to get the services they want. This will require strong advocacy from individuals and families. Recommendations for Policy and Practice * Increase the occurrence of interagency agreements and mandating employment "readiness" during the last two years of high school. The outcry for a unified system and combining departments ("move VR into the Department of Labor") was common. The following comments highlight this theme: “[Provide] access to all information in one place for transition services;” “Merge funding that might prevent consumers from being ‘bounced’ from agency to agency. People get the services they need by walking in ONE door;” “Have caseworkers be responsible for helping students and families ‘connect’ with the system. This same caseworker could overlap their services before and after graduating/leaving high school, so that services could remain intact;” “No rewards for closing cases; instead, service coordinators and case managers should be rewarded for getting someone a good-paying job and natural supports to maintain that position,” and “Parents need to receive and know information ahead of time, so that they too can anticipate and help with student needs.” * More outreach by the One-Stops (going into schools and share services available to students). * Create more flexible adult agency policies and funding mechanism, so agencies can work within schools and seamlessly carry students from school into the adult world. Funding must be a creative process, rather than what is allowed by a specific regulation or slot. Adult agencies must participate in transition planning. Cost sharing, in all its various forms, appears to be a key factor in making the connection between the adult world and high school and in successfully securing individual services and supports. Schools must adopt a school-wide plan (an agreement between agencies and the school) as well as develop a district-wide policy on interagency cost-sharing and transition roles * Better communication about adult service agencies and provider organizations and their role in providing transition services is needed. Students need access to supports and services in a way that is clear and understandable. One caseworker/transition specialist who supports an individual and navigates the service system would be ideal. Clearer information sharing among schools and agencies is critical. * Set up individual student accounts to pay for needed services, rather than having the student go to different agencies each time they need a service funded. Other recommendations included benefits counseling and planning for students and families in every school, integrating adult services for transition planning beginning at age 14, or earlier if possible, and identifying how mentors can be utilized as supports for students in the community. * Postsecondary education is another place where students can find support. There is a gap that higher education can fill. They must be more accountable to high schools and students. Higher education policies as they are now must be looked at to determine how colleges can be a part of this collaboration, so that they see themselves as part of the bigger picture. Policy ideas revolved around looking at the college certificate. Who grants the certificate? What will high school students need to get one? In light of many states' high stakes testing, the diploma issue is a critical one. What about a diploma from high school? Will it be necessary in order to go to community college? What will the effect be on financial aid policies? Is it reasonable to give financial aid to someone who has a minimal chance of paying it back? Can SSI recipients have their loans forgiven? * Increase the income limit for Social Security. It would be beneficial for people to be able to keep benefits even if they lose their jobs. Using the Ticket-to-Work program as a model, this policy change would help many consumers. Reallocation and flexibility of shared funding would help students get better and more integrated services. Recommendations for Further Research * What are the most important aspects of transition planning (e.g., postsecondary issues, quality of life issues, access to medical care, income, transportation, registered voters, participating in community life, health insurance, employment, service coordination, family, and natural supports); * Conduct research on innovative models of service coordination and integration (e.g., individual broker model); * Conduct follow-up on employment and post graduation from secondary school; * Document long-term student interests, preferences, and needs (detach from IEP); * Conduct follow-up studies on the implementation of transition plans; * Identify what it is that allows good transition planning to occur; * How many students stay in postsecondary education and get a degree? What contributes to successful completion? More extensive follow up on student outcomes after high school and college. How successful are students in obtaining jobs in their areas of interest; * What combination of services is most effective in student's job success and/or in college success; * What role can mentors have in supporting students to be successful in college or employment? Are mentor services used beyond college; * What incentives exist for high schools to partner with colleges/employers; * Does involvement in college clubs/fraternities/campus social activities contribute to finding jobs post-college; * Determine how to support students with very specific learning disabilities in college; * Investigate assessment issues around students in postsecondary environments who are not matriculating and how this affects student outcomes; * What are the long-term effects of person-centered planning and team-based planning on the on individual transition process (person centered approach to accommodations); * Who is accountable for student-directed, person-centered transition plans; * What are the characteristics of employers who hire individuals with disabilities; * How do students with cognitive disabilities advocate for their needs in employment and educational settings; * Are students pursuing jobs in their fields of study? How different is this from students without disabilities; * Delineate the benchmarks of successful employment outcomes for students with disabilities; * Identify the essential building blocks and variables that make up these programs so that others can replicate the model to meet the needs of individual communities; * Determine the feasibility of individual accounts used for three main purposes: college, job training, and housing; * Identify quality indicators of support for individuals with various disabilities - different supports that translate into different practices; * Investigate the resource mapping process for use with adult agencies and providers; * Figure out how to address the middle class, social bias of current service delivery * What works and what doesn't work for successful outreach to parents; * What are the most effective ways to teach self-advocacy? What are the differences in their own and others' expectations of students, both with and without disabilities, who advocate for themselves; * What are the differences in the effectiveness of services for students from culturally and ethnically diverse populations; * Are Universal Design for Learning practices being implemented in postsecondary education and if so, which were most successful for students in college, and * What outcomes are possible for students who do not pass high-stakes testing and won't receive high school diplomas? Generic Recommendations * More people must be involved in the transition process. Help students create portfolios (electronic) that document their high school careers. Advocate for heterogeneous groupings in high school, so that all students can receive the same services and supports to learn what they need to for success in later life; * Focus on person-centered planning (PCP) and create an array of natural supports around the outcomes of the PCP; * Mandate "transition coordinator" positions to work on secondary-to-postsecondary transition services. This individual would make connections with all organizations and supports and assist in advocating for students' needs; * Assign administrative responsibility/accountability for student outcomes; * Share information about good practices and even horror stories so that people know what is out there. These kinds of stories can both frighten and energize people into action to change how things are; * Develop guiding principles based on promising practices and share these with other states so that they can apply and re-tool as needed; * Establish a mentor program for students going from high school to college or employment; * Create career pathways for all students, including students with intellectual disabilities, and * Survey IEPs – again. Determine what's good and what's not so good to help develop guidelines for better practices in schools. Communicate more before, during, and after IEPs to make sure everyone is "on board." Recommendations for Training * Innovative models for service coordination and integration; * Job development and job coaching; * General "good teaching" practices (e.g., Universal Design for Learning); * Training on guardianship for students and families; * Comprehensive transition information for students and families; * Self-advocacy, self-determination (mandatory course); * Information about benefits - how to use them and who to contact; * One-Stop career center information, and * Restructuring of interagency teams. Capacity Building Institute Participants Abelson, Patti High School Liason, SEPTA Mamaroneck High School (MHS) Adams-Shango, Hazel Project Coordinator Center for Independence of the Disabled Almeida, Kevin Job Developer Walnut Street Center, Inc. Anderson, Catye Employment Policy Analyst Center for Delivery Systems Development Bailey, Bruce F. Case Services Manager CMNI Office of Vocational Rehabilitation Bartolomei, Anita Special Education Assistant Director Worcester Public Schools Battles, Kathy Assistant Vice President Road to Responsibility, Inc. Bazile, Edith Senior Director for Professional Development Boston Public Schools Beila, Rob Program Manager Road to Responsibility, Inc. Bowers, Alexandra Senior Program Specialist Boston University Brewer, David Cornell University Brugnaro, Lora Employment Specialist University of Massachusetts at Boston Castiglioni, Betty Education Coordinator for Transitions Department of Mental Health Christensen, Andrew Educational Specialist University of Massachusetts at Boston Crane, Kelli Program Manager TransCen, Inc. Crawford, Felicity Educational Specialist University of Massachusetts at Boston Dabek, Beth Educational Specialist University of Massachusetts at Boston DeCourcey, Mary Inclusion Specialist Cambridge Rindge & Latin High School Durkin, Jill Employment Training Coordinator Aim Independent Living Center Felice, Annette Employment Program Manager Employment Resources, Inc. Foley, Robin Federation for Children with Special Needs Getzel, Liz Project Director Virginia Commonwealth University Gillan, Nicola Education Specialist University of Massachuesetts at Boston Grande, Patrice A. Embark Program Director Northshore Education Consortium Hagler, Rochelle Office of Youth Services and Job Corps Hart, Debra Education Coordinator University of Massachusetts Boston Hoff, David University of Massachusetts at Boston Hoffman, Rob Project Director University of Missouri-Columbia Jezard, Jane Department Head SPED Barnstable High School Kiernan, William Director University of Massachusetts-Boston Kinnegbrew, Abigail State Transition Specialist Special Education Planning & Policy Development Lannan , Terri Benefits Specialist Employment Resources, Inc. Liguori , Leonard Executive Director Directions in Independent Living, Inc. Luecking, Richard President TransCen Inc. 451 Hungerford Drive Suite 700 Rockville MD 20850 Mack, Mary Research Associate University of Minnesota Marrone, Joe Program Manager Institute for Community Inclusion McGowan, Mary O. Coop Education Director Newton North High School McMann, Susan Evaluation Team Facilitator Boston Public Schools Moriarty, Kathleen Educational Specialist University of Massachusetts at Boston Nemeth Cohen, Rachel Education Specialist University of Massachusetts at Boston Nobbie, Pat Public Policy Director Governor's Council on DD for Georgia O'Connor, Jed SPED Teacher Cambridge Rindge & Latin High School Okereke, Nnanna University of Massachusetts, Boston 15 Fencourt Avenue O'Leary, Ida High School Team Chair Malden High School Paiewonsky, Maria Educational Specialist University of Massachusetts at Boston Patrick, Lisa University of Massachusetts at Boston Peterson, Willa Disability Services Director Fitchburg State College Pradell-Boyd, Brenna Program Manager University of Massachusetts Medial School Prince, Stephanie Child Advocate Directions in Independent Living, Inc. Ravell, Bernice Counselor II CMNI Office of Vocational Rehabilitation Roach, Jerri Teacher Worcester Public Schools Robison, Richard Executive Director The Federation for Children with Special Needs Roche, Irene Wayside Youth & Family Support Network Rodriguez, Terri Coordinator Quinsigamond Community College Sandelin, Erica Employment Specialist University of Massachusetts at Boston Schoch, Kate Wayside Youth & Family Support Network Slasinski, John Supervisor of SPED Springfield Public Schools Smith, Ingrid Student St. Clair, Douglas Project Director Northern Arizona University Stern, Marci Rehabilitation Counselor National-Louis University Stodden, Robert Professor and Director University of Hawaii at Manoa Sylvia, Barbara Job Developer Career and Tech Department Tamborella, Elizabeth Psychologist Weymouth Public Schools Taymore, Cindy Secondary Program Manager Malden High School Tilney, Kirsten Education Coordinator University of New Hampshire Roy, Tracy Coordinator Springfield (MA) Public Schools Tyner, Sandra Medical Doctor Varney, Elena Training Associate Institute for Community Inclusion Vogel, Sarah Director Fall Mt. Regional School District Weir, Cate Project Coordinator University of New Hampshire Whelley, Teresa Coordinator of Research University of Hawaii at Manoa Wight, Barbara SPED Teacher/Rehab Counselor Weymouth High School Wilkerson, Darla Assistant Director University of Missouri-Columbia Zafft, Cynthia Post Secondary & Employment Specialist University of Massachusetts at Boston Zimbrich, Karen Educational Specialist University of Massachusetts at Boston ---------------------------------- Preparation of this report was supported by grant # H133B980043 from the National Institute on Disability and Rehabilitation Research (NIDRR) and by cooperative agreement # H326J000005 in partnership with the Office of Special Education Programs (OSEP), U.S. Department of Education. The opinions expressed in this document do not necessarily reflect the policy or position of any sponsoring agency.