Coordination and Management of Services and Supports for Individuals with Disabilities from Secondary to Postsecondary Education and Employment Teresa Whelley, Ed.D., Assistant Professor and Coordinator, National Center for the Study of Postsecondary Educational Supports, Center on Disability Studies, University of Hawaii Debra Hart, M. Ed., Education Coordinator, Institute for Community Inclusion, University of Massachusetts, Boston Cynthia Zafft, M.A., Postsecondary Education Specialist, Institute for Community Inclusion, University of Massachusetts, Boston Purpose This paper will examine the often overwhelming and confusing process associated with finding and accessing services and supports encountered by students with disabilities in secondary school as they prepare to attend postsecondary education and/or engage in employment. The paper will present: 1. A description of problems related to coordination and management of services and supports, and the subsequent impact on outcomes for youth with disabilities as they exit secondary school. Four major barriers related to coordination and management of services will be identified. 2. A conceptual model, which addresses the four key barriers, will be developed. 3. Current practice in the area of coordination and management of services and supports will be discussed. 4. Emerging promising practice that begins to address the four barriers will be described. 5. Recommendations for further research and practice as they relate to the four major barriers to effective coordination and management of services will be offered. I. Problem Statement Students with disabilities who access postsecondary options, even those with strong self-determination skills, find the task of accessing supports and services confusing, if not staggering and overwhelming. In order to coordinate and manage their own supports and services, students must identify needed supports and services, use a new nomenclature, locate these supports and services, and access them. For example, arranging transportation to and from campus is very confusing and complex. Will the student drive? Will the student use accessible public transportation? Para transportation? Does the school have a campus shuttle system? Will the local vocational rehabilitation agency provide assistance with a vehicle and driver? Is the student eligible for medical transport? Each of these methods of transportation needs further investigation and application regarding eligibility standards, documentation requirements, and payment structure. This may require registration with the Disability Support Office on campus, disability determination and registration with an external funding agency, acceptance by that agency as a client, and then locating the actual provider of transportation to finally receive transportation service. The transportation provider may have medical requirements, requiring more documentation. These documentation requirements are all too often conflicting and/or repetitive from the perspective of the student. Navigating “red tape” may take months, is disempowering, and provides mixed messages to the student. In order to be accepted by each of the agencies listed above, a student may first need to be a capable, registered, postsecondary education student with a promising future, then be a client of an agency with a case manager, and possibly even be a “sick person” eligible for medical transport and unable to navigate the campus alone! Over the last twenty years, considerable federal and state resources have been allocated and innumerable efforts have been made to create a “seamless” transition for students with disabilities from secondary school to typical options in adult life. These attempts, however, have not had as significant an impact as intended on the quality of postsecondary outcomes for students with disabilities (Wagner & Blackorby, 1996; Gilmore & Butterworth, 2000). Studies have found that only 27% of students with disabilities go on to postsecondary education as compared to 68% of students without disabilities (Blackorby & Wagner, 1996; Wittenburg, Fishman, Golden & Allen, 2000). The lack of participation in postsecondary education and employment is even greater for students with more significant disabilities and those from diverse cultures. For individuals with significant disabilities, the labor force participation rate is approximately 30% for Caucasians, 21% for Hispanics, and 18% for African Americans (NCD Lift Every Voice, 1999). The American Council on Education (1998), which examines information on college freshman with disabilities, found that of those reporting a disability, 79% were Caucasian, 9% were African American, 3% were Asian American, and all other groups accounted for 6%. For students with more significant cognitive disabilities, the participation rate is fewer than 2% (HEATH, 1999). According to Flowers and Edwards (1996), ethnically and culturally diverse individuals with disabilities typically have less access to, and receive fewer disability-related services than, the majority of peers with disabilities. This is due to factors such as language differences, cultural and social class differences, lack of awareness or information about service and support options, as well as systemic service inadequacies. As a result, diverse individuals with disabilities are often denied meaningful opportunities in postsecondary education, work, and community life (Hasnain, et al, 2001; Katsiyannis, et al, 1996). The Individuals with Disabilities Education Act Amendments of 1997 (IDEA 1997) stress the need for collaboration on an individual planning level and an interagency systems level. Research on promising practices uniformly emphasizes the need for collaboration among Local Education Agencies (LEAs), adult service agencies, service providers, students, families, generic community organizations, and employers to eliminate service gaps, avoid service duplication or discontinuation, and increase efficient use of limited resources (Kohler, 1998; Everson & Guillory 1998; National Transition Alliance, 1999; NICHCY, 1999; Chadsey, Leach, & Shelden, 2001). Despite emphasis on collaboration in the law and in research on promising transition practices, placement decisions are often agency-driven or dependent upon the availability of service slots. When services and supports can be located, managing them still poses a significant barrier to success in postsecondary options (NCSPES, 2000). Educators, adult service agencies, and employment service providers face barriers to collaboration, which include a lack of knowledge regarding each other’s systems and a reluctance - and often times inability - to bypass bureaucratic constraints that frequently result from agency waiting lists and limited financial resources. There is growing recognition that the complexity of current service systems can and often does serve as an impediment to developing a coordinated and comprehensive state and local systems approach to serving individuals with disabilities in postsecondary education and employment (Stodden & Dowrick, 1999). Federal laws and related policies, several of which are very recent, have been implemented to address barriers to postsecondary education and employment for individuals with disabilities. These include the Americans with Disabilities Act of 1990, Amendments to the Rehabilitation Act of 1973 as amended by the Workforce Investment Act of 1998, and the Ticket to Work and Work Incentives Improvement Acts of 1999. Proposed is the President’s New Freedom Initiative which is coupled with the creation of the Presidential Board on the Employment of Adults with Disabilities monies, allotted in the 2001 budget for the Office of Disability Policy, U.S Department of Labor. As a result, there are many new exciting initiatives that exist on the state level targeted at improving postsecondary outcomes for individuals with disabilities. If these new initiatives combined with existing resources are to be as effective as possible, they must be implemented in a coordinated, streamlined, consumer friendly, culturally sensitive manner. The following four barriers to effective coordination and management of supports and services often create individual barriers that combine to undermine the transition process for students with complex needs who may have to access and report to multiple agencies and sources of support. These barriers are not mutually exclusive and each frequently has direct impact on one another. The four major barriers are, but are not limited to: - There are few partnerships that establish interagency cooperation at the state and local level (Chadsey, Leach, & Shelden, 2001; Hart, Zafft, & Zimbrich, 2001; MNSIC, 2001; Johnson, 2000; Johnson & Sharpe, 2000; Williams, & O’Leary, 2000; Everson & Guillory, 1998). - There are uncoordinated mechanisms for information sharing, communication, and lack of coordination of services and supports across agencies and audiences (MNSIC, 2001; Johnson & Sharpe, 2000; Grayson, 1998; Wehman, 1996). - There is a lack of resource mapping and alignment on state and local levels (Hart, Zimbrich, & Ghiloni, 2001; Butterworth, Foley & Metzel, 2001; Johnson, 2000; Mattessich & Monsey, 1992). - There is a lack of identification of service gaps and a lack of development of services to address gaps (MNSIC, 2001; McGrath & Van Buskirk, 1999). To function effectively, services and supports must be flexible, individualized, and supportive of consumer choice and control. The proposed conceptual model of this paper embodies these elements and is based on Bronfenbrenner’s (1986) classic work on open system theory and his related system theory of social content (micro, meso, and macro systems), along with Mitchell’s (1999) paradigm for individual supports, as well as Stodden and Smith’s (1996) and Everson and Guillory’s (1998) work on teaming. While the need for consumer control, choice, and self-determination is of paramount importance and the central driving force steering any comprehensive system of service and/or support coordination, these topics are not addressed in great detail in this paper because they are discussed in another document in this set entitled “Self-Determination and Career Development” (Izzo & Lamb, 2002). Terms used in the coordination and management of supports and services There is a plethora of terms used across the secondary, postsecondary and adult service settings. The authors have grouped the terms into the areas Secondary Education, Postsecondary Education and Employment. A partial list of definitions and terminology used in this paper is contained in Figure 2 and is discussed under section III. 2 Current Practices, Uncoordinated mechanisms for information sharing, communication. II. Conceptual Model The proposed conceptual model, based on the work of Bronfenbrenner (1986), Mitchell (1999), Stodden and Smith (1996) and Everson and Guillory (1998), is designed to lead to individual empowerment. The model is flexible, emphasizing the individual through choice, control, and autonomy, and the need for collaboration, while also recognizing the functions of supports and services. The theories that support the model are discussed below and address the four key barriers previously identified: partnerships; mechanisms for information sharing - communication and coordination; resource mapping and alignment; and service gaps. Open System Theory Bronfenbrenner proposes an open system approach that may be used to develop systems of support for individuals with disabilities (Brofenbrenner, 1986: Magunsson,1995). The open system is interdependent with the environment. In it, resources are imported from the environment, processed, and an output is produced. For example, a service (the resource) may work with secondary students (the input), and deliver an intervention, such as career planning with a resulting job placement (the output). This career planning and placement service will not function if it is not interdependent with its environment. All of the barriers to coordination and management of supports and service apply to this open system. Partnerships with secondary schools and employers are necessary for job placement. Mechanisms for information sharing (communication and coordination) must be in place for the career planning and placement service to perform its processing function. Resources need to be mapped and aligned so that prospective employees may receive needed supports, and service gaps need to be identified to prevent lack of support at critical times. The perspective of coordination and management of supports and services as an open system includes all of the necessary functions of a system and offers a method of explanation of the barriers to successful coordination and management of supports and services. Bronfenbrenner also theorizes a related organizational theory of the social context system ( Brofenbrenner,1989; Goodnow,1995). In it he describes four levels of social organization: the micro, meso, exo and macro levels. The micro level contains the individual and the most immediate family, friends and relationships. Like the center of a bull’s eye, this level is the center of desire, need and program intervention. Moving out creating a concentric circle, the meso level is the intermediate and mediating level for all people providing linkages or processes between two or more persons. The exo system, taking from the agents of the meso system, has relationships between two or more settings. These agents are the supports outside of the individual and immediate family, such as schools, extended family, churches, neighborhoods, human service agencies and other supports, clubs and sports. The macro level is the outer most concentric circle around the individual. It contains agencies such as state departments, school districts and university systems. There are interrelationships among all levels that intertwine, with open systems in community settings, and can be thought of as culture or subculture. Figure 1 (Please consult the PDF Version of this document for this information.) Teaming Another element of the proposed model is the concept of “teaming”. Stodden and Smith (1996) look at integrating various perspectives and offer valuable principles for implementing ideas of collaborative partnerships into practice. Principles include empowerment, shared decision-making, and self-determination. By focusing on strengths and capabilities, empowerment allows one to participate fully in the achievement of a collective vision. Individuals must also feel a shared ownership for decisions and assume responsibility for results. Functioning teams are open systems that import ideas, process them and have outputs. In teaming, partnerships are created and there is a mechanism for information sharing. Again, partnerships, communication and organizational alignment can be built using this approach. Stodden and Smith’s (1996) teaming is on an interpersonal level. If teams are to be realized on an interagency level, collaborative teams must be applied to our model and concepts from teaming literature and best practices for transition incorporated into practice (Everson & Guillory, 1998). The need for interagency teams to pursue comprehensive transition service is not only a multi-level system change and a best practice, but an essential practice for transition (Kohler & Chapman, 1999). The concept of multi-level system change is compatible to open system theory, in that there is a call for change on both the meso and macro level as the partnerships, methods of communication, alignment of resources and service gaps are identified. Everson and Guillory (1998) have designed a developmental process for collaborative interagency teamwork that includes four guidelines for team development: forming a team, storming the stage (organizing), norming the stage (implementing) and performing on the stage. This is a process that facilitates transition on the state, regional and local levels, and transition system change, ultimately focusing on the student (Everson & Guillory, 1998). Again, the collaborative interagency model is compatible with Bronfenbrenner’s (1986) social system context theory. The implementation of services that support students with disabilities in preparing for postsecondary options requires an inclusive, open framework focused at the “street level” (Lipskey, 1980; Mosquera, Zapata, & Lee, 2001; Schofield, 2001). This is the meso level of open system theory. Macro or top-down programs for individuals with disabilities have been primarily designed using the residual model: i.e., delivering service only when individuals are unable to function (Moroney, 1986; Moroney & Kryso, 1998). This form of service delivery is divisive, pitting the “haves” against the “have-nots.” One reason why students with disabilities in educational institutions, as well as those moving to employment, have not received community integrated supports delivered by compatible organizations on a consistent basis is the continuation of the residual model. Supports needed for individuals with disabilities cannot be implemented only at the micro or individual level, or dictated at the macro level, but need to be aligned at all levels of the social context, open system. Choice, control and person-centered planning Consumer choice and control, ideas that rest upon self-determination and person-centered planning, are important aspects of a support delivery system for individuals with disabilities. Mitchell (1999) identifies the four basic components of this type of system as being: (1) individualized participant budget, (2) personal broker, (3) a business agent or fiscal intermediary, (could be an agency) and (4) the freedom of the consumer to choose service and support providers. Other important factors of support delivery have been identified as: primary direction from the individual in formulating plans, involvement of family in the planning process, focus on strengths of the individual rather than deficiencies, and emphasis on settings and supports available in the general community (O’Brien & Lovett, 1993). Mitchell’s (1999) support delivery theory is manifested in the coordination and management of supports and services in person-centered planning and is at the center of the model built around Bronfenbrenner’s (1986) social context, open system theory. This planning process asserts that the individual has ownership of the process. Facilitators are important in directing the discussion, but must maintain a role of support rather than leadership. The individuals themselves are in the position to choose and direct the vision of their lives. People must be allowed and supported to do as much of the decision-making as possible. Individuals are also involved in determining what supports are necessary, and how and by whom supports will be provided. In order for an organization to support self-determination, the proposed system must be developed with the primary goal of addressing the interests of the individual. This system optimizes efficiency, choice, and outcomes. Independent support brokers, a more recent strategy, aids individuals in creating and implementing their plans. Family, or anyone the person with a disability knows and trusts, can assume this role and have a vested interest in the happiness of the individual. A support broker is someone who provides information to the individual, helps them to develop a personal plan, and acquires the needed supports with the individual (Winnick, 1999). The characteristics of an independent brokering function include: no conflict of interest, independence from service provision, and real authority. The people most free of conflict of interest to coordinate supports are the people with disabilities themselves. Summary of Conceptual Model The application of social context theory with open system theory to the coordination and management of supports and services for students moving from secondary education to postsecondary education and employment provides a most apt model. The processes of moving from each of these settings to the next requires: partnerships among people from each level of the system; mechanisms for information sharing within each level; and levels and resources to be mapped and aligned with service gaps identified (see Figure 1). These partnerships are teams either on an interpersonal level, as Stodden and Smith (1996) describe, or they can be interagency teams as Everson and Guillory (1998) explain. In both cases, there is the focus on the individual, at the center of the system. Mitchell’s (1999) portrait of the person in the coordination process parallels the micro system of Bronfenbrenner’s theory. Also, there is the identification at the meso level where mediation with the outside world takes place. Finally, there is recognition of the macro or larger world of agencies that may control the flow of resources or provide supports for people with disabilities. This model describes the work needed for cooperation and partnerships, information sharing, communication and organizational alignment for the wide range of stakeholders in the processes of coordination and management of supports and services. III. Current Practice An examination of current practice by educational and service agencies reveals existing challenges to coordination and management of supports and services. These challenges are discussed according to the four barriers identified in the problem statement of this paper and are as follows: 1. Few partnerships establish interagency cooperation at the state and local level: Lack of partnerships impacts service deliver very early on in the student’s educational life. The Local Educational Agency (LEA) is virtually the sole source of services and supports for children with disabilities, at times to the exclusion of all other resources. Typical health care provision and typical school and pubic transportation are often not used, though possibly available. A major change between secondary and postsecondary environments is the method of qualifying for services and the source of funding. While in high school, students are entitled to a free and appropriate education through their LEA under IDEA (1997). The services directed by IDEA in secondary education are designed to be of the team approach, and may be, but as Everson and Guillory’s (1998) analysis is applied to the multi-level need for teaming, it is revealed that students and other stakeholders may not be prepared to participate in teaming, i.e., the team has not been built. After high school, as seen in the transportation example above, students must approach adult service agencies and prove they are eligible for supports and services according to the agency’s requirements. After eligibility is established, agencies may or may not have funds available to provide the services and supports requested. Without interagency partnerships, students, their families, and adult agencies have difficulty anticipating and planning for services and supports needed in the future. There are two more examples of organizational structures that impede partnerships. First, the interactive effects of the various adult service systems of agencies presents such a complex maze of rules, regulations and requirements that even seasoned counselors working within the individual systems are challenged to keep up with change. Many individuals and families feel that after they educate themselves about services and supports in these new systems they must pester the responsible party until services are provided. Some students become worn down, some get angry, and often students do not get the supports and services that they need. Students in postsecondary education long for a partnership among the postsecondary service providers (NCSPES, 2000). This is an example of a closed system of service delivery. The closed system is inflexible, does not accommodate new members and is not interdependent with the environment. According to Bronfenbrenner, the lack of partnerships means that the individual is being mediated at the meso level to such an extent that their efforts are being thwarted. The second example of an organizational structure that impedes partnerships is the persistence of the residual service model. Adult services have historically been designed as residual services (Moroney, 1986) that only deliver support and services when the individual can no longer function. There is movement to align and share resources, most notably through the New Freedom Initiative (2001), but agencies are still arranged to assist only when an individual is not capable. A good example of this is the Social Security Administrations financial requirements for eligibility for Social Security Disability Insurance (SSDI) that still require an individual to have less than $2000 in assets to qualify. 2. Uncoordinated mechanisms for information sharing, communication, and lack of coordination of services and supports across agencies and audiences: Students and their families often expect adult service agencies and institutions to mirror the system with which they are familiar – the secondary education system. Secondary schools report that they have difficulties finding effective ways to reach and educate students and parents about the challenges of navigating the complexities of transition. There is also a general lack of knowledge among families during the time of transition and an unclear perception among professionals of appropriate family involvement (Hanley-Maxwell, Pogoloff & Whitney-Thomas, 1998). Due to issues of confidentiality, records are not routinely shared among adult service agencies. While this provides important safeguards, it does mean that agencies may not be familiar with record-keeping systems of another agency or institution. Student data collected by one agency or institution is not usually in a form that is readily useable by the receiving institution, when information is released with student and/or parent permission. This may foster duplication in assessment and barriers to collaboration among the agencies, as well as frustrate all involved. Postsecondary educational institutions do not typically accept the high school Individualized Education Plan (IEP) as documentation of a disability or to aid in the design of postsecondary accommodations. However, postsecondary institutions are usually able to use the testing administered to create the IEP if it is disability specific and current. For example, a student with a learning disability, after consultation with the postsecondary institution, might submit the psycho-educational evaluation performed by his high school during junior year as documentation of his learning disability. If a student needs further or more current documentation, it is the student’s responsibility to obtain this information. Some adult service agencies, for example, the state Vocational Rehabilitation (VR) system, may pay for this documentation if it furthers an employment outcome. Other verifications, such as certificates of blindness or audiograms for individuals who are deaf or hard of hearing, are often part of the student’s school file and/or medical record and need to be collected and maintained by the student after leaving secondary school. This is a task with which most young adults are unfamiliar. Within postsecondary settings, non-educational supports and services are not typically funded sufficiently to meet the demands of those who need them. These adult agencies are, therefore, in competition for state and federal monies. This competition is a barrier to information sharing, communication and coordination of services and supports. As students with disabilities move from secondary education to postsecondary education and/or employment, a major challenge they face is the different terminology used between sectors. The resulting confusion is in itself a barrier to communication. This confusion in the meaning of terms may disguise service gaps encountered by students and workers with disabilities. The authors have grouped the terms into three categories: Secondary Education, Postsecondary Education, and Employment. Figure 2 (Please consult the PDF Version of this document for this information.) Definitions of some terms vary across all three environments. Terms commonly used in one setting may not appear in the other two settings. There is a need to develop a mechanism for information sharing and communication that is based on a consistent vocabulary for describing services and supports. Finally, each of the agencies, including medical agencies, has a case management structure which impacts communication. Case managers range from being very helpful to acting as gatekeepers for their agency. Case managers may be independent of funders or service provision. There is also a range in discretion that each case manager exercises as allowed by agency policy or culture (Lipskey, 1980; Mosquera, Zapata, & Lee, 2001; Schofield, 2001). Individuals seeking supports from all of the agencies involved may qualify and receive different supports from different caseworkers at different times. Individuals working with case managers can be very frustrated by the bureaucratic nature of the interactions needed to obtain coordination and access to their services and supports. This deficit of mechanisms for information sharing, communication, and coordination of services and supports across agencies and audiences supports the need for a team approach such as that recommendation by Stodden and Smith (1996). The formation of teams leads to shared communication, shared ownership, and the building of partnerships, whereas divergent practices with separate personnel in the form of case managers within agencies is an example of isolated work creating barriers to coordination. 3. Lack of resource mapping and alignment on state and local levels: Youth with disabilities who are embarking on adult life often need services and supports that interface with many state and local agencies. At present, each organization is structured to focus on its own particular goals, mission, priorities and particular programmatic need area. Typically, these program needs have been considered in a very fragmented way, out of the context of other challenges faced by the individual and disregarding additional resources that might be accessed across systems. Often, student needs must fit an existing array of services and, therefore, the system's response is not individualized or flexible. The student with a disability needs to understand the eligibility criteria for each of the agencies being applied to, and adhere to their processes, however time consuming, conflicting and even humiliating it may be, in order to acquire necessary supports and services. All of the adult service agencies have developed over time, some with long histories, traditions and resulting practices and processes. The organizations are systems that do not readily change with the zeitgeist of the times. Bureaucratically, these systems are established and may be inflexible due to their own internal processes, cultures and histories. The incentive to remain the same and not to adapt to individual needs is often great (Glidewell, 1988). Resource mapping and resource and organizational alignment on state and local levels are one solution for current practice. Bronfenbrenner’s (1986) open system theory could apply here as resources are identified and mapped for their distance from the individual receiving service. Everson and Guillory (1998) recommend transition activities be applied across all agencies and also be multi-level, thus formulating an interagency team. Alignment is a process to be engaged in with the entire stakeholder community to provide for collaborative interagency team building to lay the foundation for organizational and resource alignment. 4. Lack of identification of service gaps and lack of development of resources to address them: Finally, there are genuine gaps in, and a lack of, services. Individuals with disabilities find services are not available in their community (e.g., interpreters, educational coaches, access to public transportation) or they do not receive services or supports without a waiting period. Some states do not use their maximum federal matching funds, limiting supports and service (R. Blue, Director of the ARC of Tennessee, personal communication, June 1997). Individuals considered to have a disability while in secondary school may be deemed ineligible as adults resulting in services and supports being withdrawn. In addition, no agency or regional or state institution is directly responsible for charting out the cross-system services and locating gaps. State departments that serve adults with disabilities plan according to their budgets, political demands of the state, and federal priorities - not holistically, or with a focus on the individual. Medical supports and services can be private and competitive. Health management organizations and some medical insurers have caps on how much can be spent for services and supports, sometimes per support, sometimes over a year and sometimes over the lifetime of a beneficiary. Private health providers are also in a competitive market and provide the most needed services, creating service gaps in areas where the market is not well established. On the federal level, there is leadership to create new services and improvement in service delivery, exemplified by the standards-based testing for public education, Infra-Structure Grants for Medicaid reform, and One-Stop Center enhanced service for individuals with disabilities. Service gaps may be addressed as these initiatives are implemented, but service gaps may be created as standards for secondary school success eliminate groups of students from graduation and job training. These students are likely to seek more and more human services. The development of resources to address the deficits of service gaps is grounded theoretically by the work of Mitchell (1999) and Everson and Guillory (1998). Mitchell calls on the concepts of choice, control and autonomy, leading to a person-centered planning process. In current practices, that approach, coupled with the interagency collaborative team-building processes of Everson and Guillory (1998), could be combined to yield shared resources for transition and to align the organizational processes. It is important to note that these barriers described in items 1 through 4 are further exacerbated for students with more significant disabilities. Such students remain in special education programs well beyond their eighteenth birthdays, both because federal entitlements to public educational services continue through age 21 (IDEA, 1997) and because adult service agencies have long waiting lists and limited resources for transition-aged youth. In addition, youth with significant disabilities are often relegated to age-inappropriate, segregated programs on high school campuses, in regional facilities, or in private schools, while their non-disabled peers go to college or technical school, develop social networks, or start careers (Kohler & Hood, 2000). These settings and activities rarely reflect individual student vision, nor do they provide the type of in-depth study and practice needed to allow students to develop and pursue a chosen career path. IV. Emerging Promising Practices 1. Partnerships and interagency cooperation at the state and local level. The Institute for Community Inclusion (ICI), at the University of Massachusetts, has worked with several high schools in Massachusetts to develop collaborative partnerships between high schools, local colleges, One-Stop Career Centers and adult human service agencies. The primary purpose behind these affiliations was to develop an individual support model to improve adult outcomes for students with disabilities who traditionally have limited access to postsecondary education and employment. In keeping with many of the “best practices” outlined by the National Transition Alliance (Kohler & Chapman, 1999), each partnership developed a collaborative interagency team and used a student-centered framework to develop individual services and supports for students interested in postsecondary education and employment. Emulating the interagency collaborative team model of Everson and Guillory (1998), each Interagency Support Team (IST) was composed of a wide range of individuals including college personnel, teachers, family members, students, School-to-Career personnel, guidance counselors, Department of Mental Retardation (DMR) Service Coordinators, Vocational Rehabilitation (VR) Counselors, Independent Living Center (ILC) Counselors, and service provider personnel. Additional membership of each IST varied according to the needs of the students and the unique resources of the local community. Team members developed a collaboration agreement, which stated key principles and goals of the partnership. The model design, which took into account the unique aspects of each participating student, including his or her aspirations for the future, family wishes, and cultural background, mirrored Mitchell’s (1999) recommendations of choice, control and autonomy. The foundation of the model was based on the following guiding principles: - individual student visions, developed through person-centered planning, drive decisions about postsecondary options; - all options for student are inclusive and occur in settings that reflect a natural proportion of students with and without disabilities; - one size does not fit all—development of supports reflects individual needs and preferences; and, - collaboration is necessary. Each IST served several main functions including, but not limited to: - assisted each student in developing a career path using person-centered planning which emphasized student choice and preferences; - conducted resource mapping and alignment of locally available services and supports; - arranged cost-sharing strategies to collaboratively provide the identified services and supports; - developed solutions to gaps in service or systemic barriers; and - conducted ongoing evaluation of services. The collaborative funding between institutions and agencies was accomplished through use of the Community Based Employment Services (CBES) Program, a flexible state level cost-sharing mechanism. The CBES Program, within the context of an individual support model, was used to forge a new approach to collaborative funding that resulted in improved postsecondary outcomes for student with disabilities. The CBES Program provides a framework for the LEA, adult service agencies, and service providers to share expertise, problem solve, coordinate services and supports, reduce duplication of services, and maximize limited resources. The CBES also provides a unifying framework for each stakeholder to work toward the same goal—improved outcomes for students with disabilities as they enter college and/or the job market. This is actual resource and organizational alignment applied to a community. (See details in Hart, Zimbrich, & Ghiloni, 2001 and student examples in Appendix.) 2. Mechanism for information sharing, communication, coordination of services and supports across agencies and audiences. As mentioned, case managers can function as facilitators in communication and coordination of supports and services or they can function as barriers. The National Center for the Study of Postsecondary Educational Supports (NCSPES) is sponsoring a study in Holt, Michigan, that is examining the role of the rehabilitation counselor in transition from secondary education to postsecondary education and employment (Lamb, 2001). Recent legislation has begun to standardize the language of services and supports. In the 1997 version of IDEA, the definition of “transition services” is very similar to the definition in the Rehabilitation Act of 1992. According to Kohler (1998), the intent of aligning these two laws was to remove the barriers to school/agency collaboration and facilitate a coordinated transition from school to post-school services, clearing the way for the early involvement of rehabilitation counselors of high school students with disabilities. Aligning via standardization was clearly important in their thinking. This example also highlights Stodden and Smith’s (1996) teaming and collaborative partnership that builds shared ownership. The active involvement of rehabilitation counselors in transition planning is crucial in assisting students with disabilities in identifying post-school goals and objectives, and the supports necessary to achieve them. As well, the collaboration and coordination at the interagency systems level is critical (Kohler, 1998). In view of these changes in IDEA, promoting the early involvement of rehabilitation counselors raises many questions regarding their role within both educational settings. Additional questions surface regarding the types of services and supports students with disabilities need to experience for success in postsecondary education and the workplace. The answers to these questions influence best practices. The IDEA 1997 and ADA 1992 specify that VR case managers and/or rehabilitation counselors are to provide transition services for youth with disabilities in high school through postsecondary education. There are several human relationships involved in providing these services. The Bridges Project of Holt, Michigan has initiated a study interested in the relationships between the rehabilitation counselor and the special education teacher or transition specialist, as well as the relationship between the counselor and the student with the disability. The study focuses at the very heart of the transition process, at the individual level as Mitchell (1999) describes it. The intent of the Bridges Project is to examine the experiences of the people involved in successful transitions from high school, to postsecondary education and/or training, to employment, and to provide a case study of the best practices. Four rehabilitation counselors designated to provide transition services to youth with disabilities in 36 school districts encompassing urban, suburban and rural settings in a tri-county area in Michigan have been identified as subjects for this study. The intent was to identify a site that would provide enough of a cross-section of school districts in various settings so that the results of the study would be more readily transferable. The findings of this study will be reported in the form of case studies of best practices: one on the role of rehabilitation counselors and the nature of the human relationships in the transition process; one on the 12 students with disabilities who have successfully transitioned from high school to postsecondary education to employment; and others on the role of special education teachers/transitions specialists as facilitators in the high school setting may emerge as well. 3. Resource mapping and alignment. The state of Colorado is described as a “local control” state. The state used the Transition System Change Initiative as a model for local capacity development and worked to develop local capacity and School to Career (SCT) Reform. The local transition teams were used to develop grassroots efforts and the SCT teams were connected to the local transition teams. Partnerships included approval for funds by the local transition team. A Collaborative Interagency Policy Forum for Youth at Risk was held. The goal of the Forum was to align policies and resources that would enable at-risk youth to achieve seamless transition. As a result of the Forum, state agencies continued an effort to align policies and to implement a plan for resource mapping at the state and local level (Chadsey, Leach & Shelden, 2001). Colorado used extensive technical assistance in regional resource centers and with state personnel, special education staff and DVR staff. Local capacity was built through training on accommodations and a key focus was alignment of programs and efforts. School-to-career was linked with standards-based education reform with direct training on lessons. The state level collaboration to all youth was, thereby, demonstrated to local partnerships and communities through policy, professional development and technical assistance. Local partnerships mirrored the same commitment. People served on one another’s boards and pooled funds to hire staff, and new working agreements were forged. As part of the technical assistance, there was extensive resource mapping and technical assistance from the state to the local communities. Some regions have developed resource pools that will enable them to continue their work in the transition of youth with disabilities from secondary schools (Chadsey, Leach & Shelden, 2001). This statewide, grassroots system change effort is a fine example of Everson and Guillory’s (1998) collaborative interagency, multi-level team building. Teams were built with shared ownership and attention to partnerships (Stodden & Smith, 1996), but these theories were developed further and applied to several levels of governance and to the funding source. 4. Identify service gaps and develop services to address gaps. The Virginia Higher Education Workgroup is a development of the Participant Action Team (PAT) of Virginia Commonwealth University, Consortium member of National Center of the Study of Postsecondary Educational Supports. This workgroup consists of 30 members representing students with disabilities, two and four year colleges/universities from across Virginia, state agencies, and representatives from Virginia Association for Higher Education and the Disabled (AHEAD). The members have created three small groups to work on issues that have been identified as critical areas. They are: documentation and guidelines; cooperative agreements; and data collection/evaluation (NCSPES, 2000). The Cooperative Agreement Group’s work is pertinent to the identification of service gaps. The Rehabilitation Act Amendments of 1998 represent an attempt to build statewide consensus on determining financial responsibility between higher education institutions and state entities for assisting students with disabilities who are also VR clients. The development of interagency agreements was mandated in each state to determine the appropriate balance of financial responsibility for VR client assistance. In this way, this PAT group functioned as a team-building group, building ownership and partnerships (Stodden & Smith, 1996). After reviewing data from several state-wide surveys to determine financial costs for accommodations and discussing the inequities in distribution of DVR funds to universities and colleges, a draft agreement was developed by the Participatory Action Team based on a model between the Department of Rehabilitative Service and the Department of Education. Interpreter fees and Communication Access Real-time Translation (CART) costs were determined to be the highest cost and worst financial strain for many colleges and universities. Approval was sought to have a statewide pool of funds from which colleges and universities could draw from to obtain a specific percentage of reimbursement for interpreter costs. The Virginia PAT also investigated the identification of individuals that would be authorized to sign the cooperative agreement. Within the Virginia Community College System (VCCS), the Chancellor of the VCCS was authorized to sign one agreement to be effective for all community colleges in the state. However, with regard to four-year universities, it was determined that each university would need a separate agreement with a representative from each university signing the document. This interagency collaboration has developed with the agencies so that Virginia has an intra-agency agreement, forged out of partnerships (Everson & Guillory, 1998; Stodden & Smith1996). To date, a cooperative agreement has been signed for the Community College System in Virginia to pursue the development of individual agreements for four-year universities. A representative from the State Council on Higher Education in Virginia presented the VCCS Agreement at a statewide university meeting with the Vice Presidents of Student Affairs. Participatory Action Team discussion has centered on the development of a template based on the community college agreement, in which universities could insert their specific content and modify as needed. Further discussion will take place on the best method for distributing this information to DSS providers and university personnel. Recommendations To be effective, services and supports must be individualized, flexible, and supportive of consumer choice, change, and control. The need for consumer control, choice, and self-determination is of paramount importance for any comprehensive system of service and/or support coordination. The interaction of theories of open system, teaming and choice, control and person-centered planning provide the framework for support coordination. 1. Build partnerships that establish interagency cooperation at both state and local level: - Research effective strategies that build interagency partnerships. - Develop state and local interagency teams to address issues related to service coordination and support brokering for young adults. - Develop state and local interagency agreements and publicize (e.g., state-level newsletters and communications, local community newspapers). - Establish unified policies and practices, such as, but not limited to, issues of common intake and referral procedures, unified consumer database, common service plan, and comprehensive planning to address service gaps. - Streamline eligibility definitions at federal and state level. - Provide grants to states to develop models that foster inter-agency collaboration. - Professionalize role of service coordination by developing standards and policies including pre-service training for teachers and rehabilitation professionals as well as strategies to lower caseloads. - Develop and implement ongoing evaluation strategies to determine effectiveness of service and support coordination system. 2. Develop clear and uniform mechanisms for information sharing, communication, and coordination of services and supports across agencies and audiences: - Develop a state level web-based clearinghouse that is accessible, with a searchable online database of information on resources, services, eligibility requirements, outcomes to be expected and locations of resources that is available to consumers and families, postsecondary institutions, human services and workforce development agencies, as well as advocacy organizations. Include an “Ask the Expert” section as part of clearinghouse permitting users to post questions. - Translate information into language spoken in the communities served by agencies and address issues of cultural sensitivity that are important to family and community cultures. - Develop a consistent glossary of common terms pertaining to supports and services to be used in future national and state legislation. - Provide a variety of creative ways, including electronic formats, for students, parents, and professionals to become proficient in the use of terms related to transition. Along with glossaries, consider multimedia stories and diaries, multi-culture/multi-language outreach, etc. Evaluate effectiveness frequently. - Develop mechanisms to share mandated testing from secondary to postsecondary institutions. This would be optional, requiring consent, as some students and families appreciate the fresh start of postsecondary education. - Have the college accreditation boards monitor the recruitment, admissions, and outcomes of students and professional practices of postsecondary disability support personnel, including the number served by each. - Assure that academic standards can be achieved with accessible and appropriate standards, e.g., assistive technology is available to students to assure learning. - Alter secondary education by having IEPs more like accommodations plans of postsecondary education and employment. 3. Conduct resource mapping and alignment on state and local levels: - Conduct research on resource mapping and alignment strategies and disseminate nationally. - Create templates to coordinate resource mapping among the federal, state and local levels. - Fund federal grants to align resources at the local regional and state level. - Fund demonstration grants to develop creative and innovative mapping and alignment of systems and funding options that include a consumer driven strategy for combining funds for individuals within a single agency or across agencies. Ensure effectiveness evaluation conducted and national distribution. - Support resource brokering for postsecondary education students and adults with disabilities at the state and local level. States should pool case management resources of adult, medical, perhaps Vocational Rehabilitation and Department of Labor, and postsecondary agencies to create structures for support brokering across disciplines. - Complete an organizational analysis on the federal level that would make recommendations to all the departments of conflicting and overlapping regulations. 4. Identify and Develop Services to Address Gaps: - Include cross-system service gap identification as part of resource mapping and alignment. - Implement innovative funding strategies on state and local level that enable co-funding of service coordination. - Conduct research on pooled funding strategies on both state and local levels. - Ensure that generic resources, including natural supports, are included. - Enlist consumers and their families in locating and addressing service gaps. - Encourage the ability of all generically available service providers to be user friendly and knowledgeable regarding service to individuals with disabilities. In summary, to prepare youth with disabilities for adult life, "service coordination" must be a flexible, student-centered, culturally responsive process that assists individuals and family members to secure supports and services that they want and need. Promising practices are to assist youth with making informed decisions about services on an as-needed basis and to be responsive to changing support needs, based on individual choice, growth, and changes in circumstance. Services should include formal and generic services, including natural supports within the youth’s family and the community at large. A service coordinator, sometimes referred to as an independent support coordinator, independent broker, or personal agent, would assist individuals to develop career paths (e.g., through person-centered planning). The role of the service coordinator may also include securing and implementing support services, assisting individuals to manage their own services and supports, as well as providing ongoing evaluation of the effectiveness of these supports (Nerney, 2001; MNSIC, 2001; Whelley, Hart, & Zafft, in press). References Americans with Disabilities Act. (ADA) of 1990, P.L. 101-336, 42 United States Congress, 12101 et seq. 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Workforce Investment Act of 1998, PL 105-22, Section 6, Definitions. __________ (2002). The state Workforce Investment Board. State of Massachusetts. Retrieved on April 4, 2002 from www.massworkforce.org. Appendix A Tanya While in high school, Tanya participated in a person-centered planning process to help her create a vision for her future. Tanya decided that she would like to invite her parents, two of her teachers, and her DMR counselor and the meeting took place at school early one morning. Tanya was not really sure what she wanted to do after high school but she thought she would like to try college because her brother and sister attended college after high school. One of teachers mentioned how much the student loved animals and wondered what was available at a local college, which had a veterinary technology program. At the end of the person-centered planning meeting, a set of action steps were written up with specifics on who could assist the student in completing each step. The student eventually took two one-crediting Companion Animal Grooming courses using academic accommodations arranged through the Disability Services Office at the college and then went on to an internship at her professor’s kennel. Since graduation from high school, Tanya has started working in competitive employment at an animal grooming center near her home. She looks forward to taking Kennel Management I in the future. Services and supports which Tanya and her family learned about during this time included: applying for SSI, organizing and writing a PASS Plan; opening a file with the state VR system which included attending orientation, and learning about services; opening a file with the Department of Mental Retardation and learning about “Turning 22” resources; investigating continuation of health care under parent’s insurance; applying for Federal Student Aid, providing documentation of disability to the college disability services office and learning to use services; and, applying for and using the door-to-door public transportation systems for individuals with disabilities. Jeff Jeff was a 21 year old high school student with both a mobility and a learning disability. He was interested in working after high school but was concerned that, without a marketable skill, it would take him a long time to get enough money to live on his own. Jeff had volunteered in the school office for several years and asked the school secretary if she would attend his person centered planning. His mother, brothers, special education liaison, and high school secretary attended his person-centered planning. During the person-centered planning process, the school secretary discussed how effective Jeff was in the main office because of his strong social skills and long-time knowledge of how the office ran. She talked about how she learned her job by attending a business college and of the type of activities she saw that Jeff could do well. She offered to help Jeff gather information about the Office Assistant program at two local colleges. Jeff thought that was a good idea and the group helped him generated a list of questions he could bring on a visit to each campus. Because Jeff’s ultimate goal was to live on his own, the special education liaison suggested adding an Independent Living specialist to the IST. Jeff’s mother agreed to make a list of the activities she presently carried out for Jeff, such as providing or arranging transportation, with the idea that the IST would help Jeff pick the next set of activities he wanted to take on for himself. Over this past semester, Jeff began taking Keyboarding I at his local community college and has begun to arrange his transportation. During this transition time, Jeff and his mother have learned more about transportation options and how to obtain a driver’s license: the steps for arranging automobile modifications; how to use Work Incentives to maximize his SSI benefits; application for service through the state VR agency; application for Federal Financial Aid; how to budget for, choose, and supervise a personal care attendant (PCA); use of college academic accommodations, including a screen reader and word processing software; and he has begun to research the local housing market through information and training provided by the local Independent Living Center. Coordination & Management of Services; 5/7/03 Page 1 of 40