Curriculum Access for Students with Low-Incidence Disabilities: The Promise of UDL
What planning models are in use for students with low-incidence disabilities?
- The Evolution of the Individualized Educational Plan (IEP)
- Person-Centered Planning
- Collaborative Planning and the General Curriculum
The Evolution of the Individualized Educational Plan (IEP)
Access, participation, and progress in the general education curriculum depend on the development and implementation of high-quality Individualized Educational Plans (IEPs). The IEP is a document that makes explicit the components of a particular student's educational program by specifying that student's services, supports, ancillary aids, instructional accommodations, and, where necessary, curricular modifications. James J. Gallagher is generally credited with the concept of an IEP. He envisioned a renewable contract between parents and teachers of students with disabilities (Turnbull, et al., 2002). Gallagher was concerned that students with mild retardation were irretrievably stuck in special classes without clear and explicit goals and objectives toward which their programs should be focused. In 1972, he proposed two-year, renewable contracts to be negotiated through an administrative hearing process (Turnbull, et al., 2002). Only three years later, the IEP became the central component indeed, the touchstone of the Education for All: The Handicapped Children's Act of 1975. In a single document, student status information, program goals and objectives, resources and procedures for evaluation, and reporting of progress were all brought together by a multidisciplinary team of parents and qualified professionals to make an explicit, individualized educational plan. Originally, the formulation of a plan began with an examination of each child's developmental status (child study) and the analysis of their disability-related needs. Today, an IEP begins with an analysis of a student's present level of educational performance (PLEP) in the general curriculum (McLaughlin, 1999; Nolet & McLaughlin, 2000; Pugach, 2001).
Over the years, a number of changes have taken place in the manner in which IEPs are developed. Early on, assessment was viewed as a process distinct from instruction or intervention. It was done primarily for the purpose of diagnosis. A resulting diagnosis would lead to a three-year plan, subject to annual review, detailing the delivery of special education and related services to a student. Unfortunately, separate funding streams and distinctive professional licensure erected an impenetrable wall between the providers of special and of general education, restricting the scope and focus of an IEP to special education services alone, and thus leaving general education almost entirely out of the picture. Over time, as the limitations of this compartmentalized approach to the IEP became apparent, matters gradually improved. Approaches to assessment became holistic, contextualized, and embedded in instruction. Interaction among team members became more dynamic as the power of collaboration was unlocked. Eventually, through a readjusted focus of looking at the whole student in natural settings and delivering services in inclusive classrooms, the process of constructing an IEP evolved from a once sterile and isolating undertaking to one that aimed to place a student into environments where acquired skills could be generalized and maintained.
Greater recognition of the importance of family and caregivers as active participants in a student's education helped to transform the process through which an IEP is formulated and carried out. Once merely passive participants, parents are now viewed as active coordinators or managers of services for their children. The introduction of early intervention and early childhood special education services in 1986, and transition to adulthood services in 1990, emphasized the necessity of taking a more long-term and far-reaching approach to providing for the educational needs of students with disabilities—one that looked at a student's educational progress from infancy to (ideally) independent adulthood. Successful implementation of this approach requires planning with family, community, and adult service agencies. Families thus became more empowered as active decision-makers, looking ahead and looking outside to find necessary services and supports to achieve high quality of life and community integration for their children with disabilities. Today's challenge to IEP teams is to find ways of blending specialized curriculum with the offerings of general education curriculum.
What enabled special education services to move out of and away from substantially separate settings into family systems, neighborhoods, communities, workplaces, and inclusive schools? Certainly, consumer demand, litigation, and legislation had much to do with transforming special education from a "place" to a system of supports and resources. However, models for implementing and advancing this transformation had to be developed and refined through reflective practice. Formal arrangements of service delivery options in special education, independent living, and supported employment often leave out the potential benefits of informal or natural sources of support potentially available in family and community networks. To overcome these shortcomings, person-centered approaches to planning focus on the whole individual over time in the context of family, family surrogates, and community. Some students with low-incidence disabilities have difficulty feeling connected to, and finding affiliation with, other members of their community. Below are a series of approaches to team planning that have spearheaded the movement toward increased communitization and inclusion for students and their families. Many of these approaches are known collectively as person-centered planning (Mount, 1992).
The idea of "person-centered planning" emerged as an alternative to the static, traditional "systems-centered" approaches to special education, which has in the past concentrated merely on the placement of individuals into available "slots" in the special education system, the rehabilitation service system, or the adult services system (Mount, 1992). Most notable among the person-centered planning approaches are Making Action Plans or MAPs (Forest & Lusthaus, 1990) and Group Action Planning or GAP (Turnbull & Turnbull, 1992; 2002). Planning Alternative Tomorrows with Hope or PATH (Pearpoint, O'Brien, & Forest, 1993) and Circle of Friends (Perske, 1988) are tools that can enhance the effectiveness and versatility of MAPs.
Group Action Planning (GAP)
GAP is a person-centered planning process developed by University of Kansas researchers at the Beach Center (Turnbull & Turnbull, 2002). GAP provides the opportunity for an individual with a severe disability to be supported by a unified, reliable alliance that includes the individual (him- or herself), family members, friends and professionals. Turnbull and Turnbull summarize research demonstrating the critical importance and positive impact of "reliable allies" in person-centered planning. As with other person-centered approaches, GAP assists individuals and their families to envision best possible outcomes and helps bring their vision to a reality. GAP members make a commitment to accomplish, monitor, and adjust those goals that provide continuous, ongoing support to individuals with a severe disability and their families.
The GAP process involves seven steps: (1) inviting people from an individual's natural network to help with the planning process; (2) choosing a facilitator who communicates well with others and is willing to assign tasks; (3) engaging an individual person and their family as much as possible; (4) highlighting information based on personal knowledge in contrast to professional "knowledge"; (5) fostering dynamic dreams for the future, directed and controlled by an individual with severe disabilities and their family; (6) brainstorming to arrive at solutions based on everyone's input that are driven by high expectations; and (7) unrelentingly celebrating progress made by the team.
Making Action Plans (MAPs)
MAPs, a widely used approach to person-centered planning, adheres to six central tenets (Pearpoint, Forest, & O'Brien, 1996):
- All students belong in the regular classroom
- General education teachers can teach all children
- Necessary supports will be provided when needed
- Quality education is a right, not a privilege
- Outcomes must be success, literacy, and graduation for all
- Creative alternatives will be made available for populations who do not succeed in typical ways
MAPs is a collaborative planning process that brings together key actors in a student's life. It involves a student and his or her peers, family, and teachers to aid in the identification of that student's goals and dreams and the educational and community resources for making them come to fruition. MAPs is comprised of seven essential elements:
- graphic recording
- key professional people (attend and take part in discussion, as do a student's parent(s) or guardian(s))
- a student, his or her siblings, and friends (attend and take part)
- key issues (are addressed)
- a next meeting (is scheduled)
- a concrete plan of action (is developed)
MAPs has been used effectively for supporting students in the general education classroom. Two facilitators—the MAPs recorder and the process facilitator—are employed to move the process through MAPs' eight essential questions:
- What is a MAP?
- What is the story?
- What is the dream?
- What is the nightmare?
- Who is the person?
- What are his/her gifts, strengths, talents?
- What are his/her needs?
- What is the plan of action?
In concluding a MAP meeting, the process facilitator asks one final question: Will you give me one word or phrase to sum up your experience of this MAP?
MAPs is not intended to take the place of an IEP. It can be a powerful way of personalizing an IEP so that it sets in motion a process for fully including a student in his or her school or community. In this sense, it is not merely an "academic exercise" or a "neutral tool" but is rather both "talk and action" (Pearpoint, Forest, & O'Brien, 1996).
Planning Alternative Tomorrows with Hope (PATH)
PATH is an extension of the MAPs process. PATH makes use of important information gathered during a MAP session and, with it, develops a more definitive plan of action. PATH addresses both long- and short-term planning. and is an eight-step process intended to provide a concrete path to guide the MAPs process. A parent, guardian or primary caregiver may serve as a pathfinder—a pathfinder wants "to explore ways to realize a socially important vision in a complex and dynamic environment" (Pearpoint, O'Brien, & Forest, 1993).
Before beginning PATH, the pathfinder addresses four questions:
- 1) Do we share a problem that we want to solve?
- 2) Do we share an important purpose, or do we want to find out whether we do?
- 3) Are we willing to face the possibility that, because important problems frequently call for shifting power arrangement and renegotiating roles and rules, we may have to confront significant conflicts, and we will certainly have to consider big changes in the way we do things?
- 4) Do we have the energy for the kind of learning that PATH demands?
PATH is a facilitated and social process with two guides—a process facilitator and a graphic recorder. It is important that guides have had the experience of being a pathfinder. Participation must be voluntary.
PATH's eight steps include the following:
- Touching the Dream (the "North Star"): A dream is the "expression of the pathfinder's identity and orientation" (Pearpoint, et al., 1993). Using probing questions, the facilitator tries to elicit a picture of what the pathfinder's dream is.
- Sensing the Goal: To find success, the pathfinder looks backward, pretends success has already been achieved, and describes what changes would have happened as a result. The pathfinder then goes forward and identifies a time-frame for change and dates by which meaningful results will have been achieved. The ideal time-frame is "just beyond your grasp" (Pearpoint, et al., 1993). The graphic recorder records all details.
- Grounding in the Now: The energy that emerges during the process is in the tension between the pathfinder's desires for the future and the realities of the present. The pathfinder is asked for an honest description of the present, and the graphic recorder records the details. The facilitator then summarizes and confirms.
- Identifying People to Enroll: Enrolling is "honoring a shared commitment." For each person identified, a pathfinder is asked to define what contributions this person can make to their dream; after a list is created, the pathfinder highlights those most likely to participate. The facilitator reviews and confirms.
- Recognizing Ways to Build Strength: The facilitator asks the pathfinder to identify strengths needed to realize their dream, the graphic recorder records these, and the facilitator summarizes and confirms.
- Charting Action for the Next Few Months: The facilitator asks the pathfinder to chart actions to transpire for the next three months. The facilitator then confirms that chosen actions match with the student's dream and summarizes the resulting action plan.
- Planning the Next Month's Work: The facilitator asks the pathfinder to plan for the next month, ensuring adequate planning time for each area of the student's action plan, and then summarizes and confirms.
- Committing to the First Step: The pathfinder sets a clear first step. The facilitator summarizes and confirms, ensuring that the first step is not taken alone.
Adapted from Pearpoint, O'Brien, & Forest, 1993
Circle of Friends
Circle of Friends (Perske, 1988) is an approach for accessing more natural or informal sources of support for students with low-incidence disabilities. If a student does not have a "natural" circle of friends, an educator can help facilitate a process of gathering people to be involved with and committed to this student. The process begins with a social scan, which is a quick picture of people involved in a student's life. A student at the center begins by drawing four concentric circles:
- First circle = Circle of intimacy: those most closely connected and important to the student
- Second circle = Circle of friendship: good friends of the student
- Third circle = Circle of participation: people, organizations, and networks with whom a student is involved
- Fourth circle = Circle of exchange: people paid to provide services to a student
In a person-centered planning process, teams need to know the range of human resources that can be relied upon in order to work collaboratively in support of the whole-life needs of an individual with severe or significant cognitive disabilities. The Circle of Friends approach provides a useful process for teams to gather that information in an informal, family friendly manner.
Collaborative Planning and the General Curriculum
Giangreco, Cloninger, and Iverson (1998) have developed Choosing Options and Accommodations for Children (COACH). Refined through several iterations, COACH is an approach to collaborative planning that, in its latest version, considers access to the general curriculum. The person-centered approaches discussed thus far have emphasized social inclusion and networks that can be accessed to effect that inclusion. Wehmeyer and his colleagues, (et al., 2002) explain that COACH goes beyond person-centered planning to include student-directed planning. Rather than focusing on family and social networks of support, student-directed planning places an individual at the center of the planning process, thereby promoting self-determination, self-reliance, and independent decision-making. Like other models, COACH is intended to accompany and not to supplant the IEP planning process.
COACH outlines a planning process specifically designed to assist teams in identifying the content of IEPs for students with significant cognitive disabilities in general education settings (Giangreco, 1996). The use of the COACH model in including students with severe disabilities in general education classrooms has been documented to change IEP goals by—
- Making them more specific and reducing the overall number of goals written
- Positively affecting relationships between families and professionals
- Shifting control of educational decisions to parents
- Facilitating changes in valued life outcomes as reflected in new program and social opportunities
COACH consists of two parts, labeled A and B. Part A assists with determining a student's educational program and creating an IEP, and Part B assists with the development of strategies and processes to implement the program created in Part A. The steps in Part A consist of the following:
- A structure for conducting a family interview, the purpose of which is to determine family-selected learning priorities for the student
- A structure for determining additional learning outcomes beyond family priorities
- An elaboration of general supports that need to be provided to or for a student
- A procedure to ensure that a family's priorities are reflected as IEP annual goals
- A concise summary of the educational program devised, in the form of a "program-at-a-glance" document
At this point, a student's team determines the least restrictive educational placement for their student and the related services necessary to support that placement. Short-term objectives for achieving annual goals are developed and an IEP document is then finalized.
Part B addresses strategies for IEP implementation by first organizing and informing a student's instructional-planning team and then developing a schedule of activities that meets student needs during their participation in the general education classroom. Next, a structure is put in place in order to develop and implement instructional plans that address student needs and participation in class activities even when IEP goals differ from those of classmates. Finally, COACH provides a framework for evaluating the impact of a student's educational experiences in terms of learning outcomes and valued life experiences.
After an overall plan for a student's education is developed by their IEP team, team members can determine educational program components using Part A. Following placement, determination of related services, and development of short-term objectives, information learned from the COACH process and from other sources is included on a student's official IEP. Part B of COACH is then used to refine current plans and to work on planning future educational goals.
COACH is designed for use with students between the ages of 3 and 21 with moderate, severe, or profound disabilities. Completion time varies depending on the experience of the chosen facilitator, how many family members are involved, and how many curriculum areas are reviewed. Any team member who is experienced with the COACH process can facilitate. Teams must agree on who takes the lead for various parts of the COACH process.
Different team members participate in different steps of COACH, as involvement of each team member depends on individual determination based on each step. No matter who participates, a team's facilitator is responsible for sharing results and feedback from meetings with the whole team. The only step that requires the attendance of particular team members is the Family Interview. "Family" refers to adults who live with and care for a student. This part of COACH is meant to be more intimate and to involve the team's facilitator, special educator, classroom teacher, and a students' parent(s) or guardian(s). Students can participate if their families so choose. COACH can be completed at any time and place that is convenient and agreed upon. However, as its intent is to develop an IEP, it should take place prior to a first IEP meeting date.
Planning in the Context of the General Curriculum
Educational program planning for students with severe or significant cognitive disabilities has moved progressively from a focus on meeting needs by teaching developmental skills in isolated settings to an emphasis on teaching functional or adaptive skills based on the results of ecological assessment. Accompanying this movement, the current approach to IEP development has been transformed to focus on more long-term and community-referenced concerns for students, granting parents and other community members more responsibility and choice in decision-making and priority-setting. With the requirement that all students, regardless of severity of disability, must have access to the general curriculum, approaches to planning must now cross-index a student's goals and objectives on an IEP with their local school's curriculum.
Planning approaches must take into account the disability-related needs of a student, the priorities of a student and his or her parent(s) or guardian(s), their school's capacity to meet their needs, and entry points in the curriculum that will permit access. How disability-specific instructional targets can be embedded in general education components is addressed in following sections.