NCAC Curriculum Access for Students with Low-Incidence Disabilities: The Promise of Universal Design for Learning This report was written with support from the National Center on Accessing the General Curriculum (NCAC), a cooperative agreement between CAST and the U. S. Department of Education, Office of Special Education Programs (OSEP), Cooperative Agreement No. H324H990004. The opinions expressed herein do not necessarily reflect the policy or position of the U. S. Department of Education, Office of Special Education Programs, and no official endorsement by the Department should be inferred. ———————————————— Curriculum Access for Students with Low-Incidence Disabilities: The Promise of Universal Design for Learning Written by Richard M. Jackson, Director of Practice and CAST’s Liaison to Boston College for the National Center on Accessing the General Curriculum ————————————————- Edited by Valerie Hendricks ————————————————- This report addresses the following questions: * What is Universal Design for Learning (UDL)? * What are low-incidence disabilities? Why are schools and communities particularly challenged in serving students with low-incidence disabilities? * What are the needs of students with low-incidence disabilities? * What curricula and instructional practices are currently used with students with low-incidence disabilities? * What planning models are in use for students with low-incidence disabilities? * How can IEPs ensure greater access to the general curriculum for students with low-incidence disabilities? * What approaches exist for enabling students with low-incidence disabilities to participate in state- and district-level assessment systems? How can the UDL framework increase access to the general curriculum for students with low-incidence disabilities? Acknowledgements When one completes a writing project of this size and effort, there are many to recognize and thank. Foremost is CAST’s Valerie Hendricks, whose editing skills remain unparalleled. Valerie’s critical review, suggested reorganizations, and detailed edits in the final stages of the writing proved enormously helpful, contributing greatly to the overall quality of the work.
I am also indebted to Kelly Harper and Lisa White, OSEP-supported research assistants based at Boston College, for their careful and extensive library research and literature summaries. Additionally, I want to recognize and thank other Boston College research assistants who helped with earlier editing and reference checking. They include Xiaoxia Chen, Jennifer Hawthorne and Randall Lahann. Finally, I want to express my gratitude to Chuck Hitchcock, NCAC’s project director at CAST, and David Rose, NCAC’s principal investigator at CAST, for their patience, encouragement, and commitment in seeing this project through to completion.
Table of Contents Introductionvi Overviewviii I. What is Universal Design for Learning (UDL)? 1 Origins of Universal Design1 Universal Design in Architecture2 Universal Design in Education4 Universal Design for Learning (UDL)5 II. What are low-incidence disabilities? 9 Alternative Systems for Classification9 A Focus on Incidence9 III. Why are schools and communities particularly challenged in serving students with low-incidence disabilities?………………………………………………………………………………………………………………….. 12
Insufficient Numbers12 Finding the Least Restrictive Environment13 IV. What are the needs of students with low-incidence disabilities? 15 Special Education is Not a Place15 Categories and Characteristics15 Addressing Intense and Complex Needs16 Clusters of Low-Incidence Disabilities17 Blind/Low Vision18 Deaf/Hard-of-Hearing19 Deaf-Blind22 Significant Developmental Delay23 Significant Physical and Multiple Disabilities25 Autistic Spectrum28 Considering Generic Needs29 V. What curricula and instructional practices are currently use with students with low- incidence disabilities?……. 1 Curriculum and Instructional Practices31 Toward a Definition of Curriculum33 Facing the Challenge of Curriculum Access35 Blending General and Specialized Curriculum37 Blind/Low Vision38 Deaf/Hard-of-Hearing42 Teaching Approaches43 Inclusion of Deaf and Hard-of-Hearing Students45 Deaf-Blind49 Communication50 Orientation and Mobility50 Individualized Education51 Transition51 Inclusion in Family51 Teaching Strategies and Content Modifications51 Significant Developmental Delay52 Curriculum54 Instructional Adaptations56 Significant Physical and Multiple Disabilities60
Autistic Spectrum61 Sensory-Motor Therapy63 Communication Therapy64 Social Skills Training64 Applied Behavior Analysis65 Multi-Treatment Programs65 VI. What planning models are in use for students with low-incidence disabilities? 67 The Evolution of the Individualized Education Plan (IEP)67 Person-Centered Planning69 Group Action Planning (GAP)69 Making Action Plans (MAPs)70 Planning Alternative Tomorrows with Hope (PATH)71 Circle of Friends73 Collaborative Planning and the General Curriculum74 Planning in the Context of the General Curriculum76 VII.
How can IEPs ensure greater access to the general curriculum for students with low-incidence disabilities?………….. 78 Expanding Roles and Functions of IEP Team Members78 Origins of the IEP79 Purpose of the IEP80 Limitations of the IEP82 IDEA ’97 Challenges for the IEP82 Addressing the General Curriculum with the IEP85 VIII. What approaches exist for enabling students with low-incidence disabilities to participate state- and district-level assessment systems? 91 The Role of Assessment in Standards-Based Reform91 Broad-Scale Assessment Systems92
Standards-Based Assessment and Students with Disabilities93 Participation of Students with Disabilities in Assessment and Accountability Systems94 Changes in Assessment Systems for Students with Disabilities96 Accommodations98 Modifications99 Alternate Assessment Systems99 Massachusetts Alternate Assessment102 Issues Remaining with Alternate Assessment108 IX. How can the UDL framework increase access to the general curriculum for students with low-incidence disabilities……. 113 Universal Design Revisited114 UDL and the Curriculum116 UDL Components117 Goals119 Methods120 Materials121
The National Instructional Materials Accessibility Standard (NIMAS)123 Assessment124 Curriculum Flexibility for Students with Low-Incidence Disabilities125 References129 Appendices145 Appendix A: Tips for Universally Designed Teaching145 Appendix B: Principles of Universal Design for Instruction (UDI)147 Appendix C: Design Principles for Lesson Adaptations148 Appendix D: Expanded Core Curriculum for Blind/Low Vision Students149 Appendix E: Six Core Principles153 Appendix F: Alaska’s State Recommendations154 Appendix G: Six Guidelines for Inclusive Programs155 Appendix H: Alternate Assessment Approaches157
Appendix I: Five Best-Practice Steps for States158 Introduction Twenty years ago, the publication of A Nation At Risk instigated two decades of educational reform in the United States. Yet improving our educational system remains a national priority. Today, various school reform efforts brought about by enabling legislation and funding streams are converging on the goal of providing a single high-quality education for all of America’s students. Expectations of excellence and equal access, as well as a focus on outcomes, are driving the effort to “leave no child behind. The goal of much of this reform work is to ensure that children of color, children living in poverty, children learning English as a second language, and children with disabilities encounter no barriers as they receive the best education possible in order to become independent, productive, and participating members of the communities in which they will live as adults. Once, the “factory” model of schooling in America viewed all children as mere “raw material” to be measured and then either mainstreamed or side-tracked, with children disadvantaged by color, poverty, language, or disability automatically winding up outside the mainstream.
This system of sorting and then tracking children institutionalized inequality and denial of opportunity. Reform efforts of today are directed toward eliminating this ad hoc marginalization of groups of children, such as those listed above, who are viewed as “at risk” in America’s schools. Reforming education, improving schools, and raising student achievement are noble and socially just pursuits, but by what means are these lofty goals to be accomplished?
Many of the diagnostic and prescriptive approaches of the past have resulted in practices where presumably the least capable receive significantly less curricula. An alternative approach to understanding student learning difficulties becomes available when assessments are applied to a school itself, or, more particularly, to a school’s curriculum, instead of to students. Measurement can then proceed with the following questions: How accessible and user-friendly is the curriculum? To what extent does the curriculum permit multiple entry and exit points?
To what degree does the curriculum allow for wide participation? How accurately and fairly does the curriculum assess student progress? In order to make a single high-quality public school education available to all, the curriculum itself must be examined. The typical lecture-and-textbook curriculum, made accessible only to those who could demonstrably benefit from it, implies that any failure to grasp the material calls for the student him- or herself to be examined for flaws, as has traditionally been the case.
Failure to examine the curriculum and to consider modifications to it presents a crucial question: are the problems confronting public schools today rooted in the students or in the curriculum? In the following pages, we take the position that the challenge of educating students with disabilities or students who are not achieving rests with the curriculum, not with the student. In particular, we posit that the problem resides within the static presentation of typical curriculum, which is unresponsive to the many and varied ways in which individual learners differ.
In order to begin addressing not the deficits of students but rather the barriers erected for them by traditional curriculum, a framework is required for examining the curriculum as it is and for suggesting ways in which it may be made most accessible to all students. One such framework is Universal Design for Learning (UDL) (Rose & Meyer, 2002). UDL takes a trifold approach to assessing curriculum as it examines, first, the ways in which content can be represented; second, the means by which students can respond; and third, the conditions under which students can engage in the learning process.
UDL anticipates an increasingly digitized information source for curriculum, which allows a UDL framework to guide the development of future digital media, delivery mechanisms, and technology tools for use in education. Today, an object as static as a textbook can be transformed in seemingly limitless ways when presented digitally (such as audio, CD-ROM, HTML). As schools become more inclusive and democratic institutions, and as technology develops exponentially, unprecedented opportunities lie ahead for all students to reach high standards in their learning and to experience a high quality of life in adulthood.
In the discussion that follows, we present practices that hold promise for increasing access to the general education curriculum for our nation’s most vulnerable populations of students with disabilities. It is the general curriculum that prepares children to take on independent, responsible, and productive roles as adults. The general curriculum—delivered through publicly-funded schools (and therefore by or through democratic institutions)—affords a central opportunity for all to pursue the American dream.
For students who are blind, deaf, multiply disabled, or significantly developmentally delayed, equal opportunity to pursue that dream is out of reach without advances in how we prepare and employ our teaching force, how we set policy that raises standards and expectations without discrimination, and, above all, how we deliver a curriculum that is flexible and widely accessible for all learners. Equal access to the general curriculum implies that all students have the right to strive for the same educational goals.
Equal opportunity implies that accommodations are in place to remove or minimize the impact of disability on authentic performance, thus leveling the playing field. Equal opportunity also implies that modifications to entry points to and benchmarks of the curriculum can be made so that students with disabilities are enabled to make progress to the maximum possible extent. The central question at hand is how communities and state and local education authorities organize to provide the best education possible for students with low-incidence disabilities.
One answer is that public education, equally afforded to all, can be accomplished through collaboration among stakeholders, including families, educators (both special and general), administrators, and policy-makers. We will demonstrate how adherence to a UDL framework for curriculum reform can yield a flexible and accessible curriculum for all students, including those with disabilities. Overview When Congress reauthorized the Individuals with Disabilities Education Act in 1997 (IDEA ’97), conditions were set for profound change in the ways disability is viewed in the broader context of schools and society.
Originally, in the mid-1970s, Congress acted to ensure that no child, regardless of extent of disability, could be denied a free, appropriate, and public education (FAPE) in the least restrictive environment. At that time, an “appropriate” education meant a special education—one that would be individually designed to address the needs that result from disability. Now, more than thirty years later, the law states that no child may be denied access to the general education curriculum—specifically, that curriculum which schools and school districts make available to all non-disabled students (IDEA ’04).
Currently, the general curriculum consists of core subject areas plus varying elective subject options. Broad frameworks for core content areas are more or less determined by individual states, which also set requisite standards for grade advancement and graduation. In the larger, national effort to reform education in general, students with disabilities are not to be denied access to the same opportunities afforded their non-disabled schoolmates.
In this way, Congress seeks to align opportunities for students with disabilities with those available to the non-disabled student population. Using broad-scale assessment systems, states now measure the extent to which all students, and the schools they attend, achieve intended outcomes. There is less emphasis on analyzing the discrepancy between what schools actually provide and what they intend to provide (inputs) in favor of greater focus on results as measured by standards attainment (outputs). Better results for schools presumably lead to better adult outcomes for students.
Just as schools are held accountable for student learning through standards testing, so too will schools be held accountable for supports and services they provide for students with disabilities in order to allow them to access the general curriculum. Accordingly, students with disabilities are now compelled by IDEA ‘97 and subsequent amendments to participate in all state- and district-level assessment systems. Today, the touchstone of special education law remains the Individualized Educational Plan (IEP), which is a document detailing the range and intensity of services and supports intended for each eligible student with a disability.
Unlike in the past, however, the IEP now formalizes the collaborative relationship between general and special education and also aligns the general curriculum with specially-designed instruction and other support structures necessary for enabling access to the curriculum. Some support structures relate to how instruction accommodates a student’s disability without altering standards (e. g. , extra time allotted for task completion, Braille in place of print).
Other supports may involve curriculum modifications that adjust performance levels or entry points but continue to address standards’ content domain or framework. Accommodations or modifications stipulated in an IEP to adjust instruction or adapt curriculum for a student also apply to the administration of state- and district-level assessments. For students with significant developmental delays, accommodations alone may be neither sufficient nor appropriate. Alternatively, states and districts may employ alternate assessments to ascertain the extent to which students meet goals delineated on their IEPs.
Alternate assessments in these cases are modifications of state standards, but they nonetheless follow the broad frameworks identified for each state’s core knowledge areas. Alternate assessment procedures can be authentic and performance-based. In frequent use are portfolios, evaluated according to rubrics that reveal the depth to which students meet standards. Alternate assessment procedures are labor intensive both to design and to carry out. Scoring by state authorities is also laborious and time-consuming.
Presumably, however, the use of alternate assessments is limited to 1–3% of school-aged children, thus minimizing the extent of onerous time and effort. Moreover, time spent by teachers in initially documenting alternate assessments is well invested, as procedures become more routine over time with an IEP’s implementation. To many, this adherence to states’ curriculum standards for students with significant developmental delays appears unrealistic, but, clearly, Congress’ intent in IDEA ’97 and IDEA ’04 is to remove barriers that historically limit access to the same curriculum taught to non-disabled students.
This amounts to a zero-reject from the general curriculum so that all students must participate in and make progress within the general curriculum to the maximum extent feasible. If one conceives of the general curriculum as the vehicle through which all students can achieve adult outcomes—outcomes understood in a broad sense as independence, participation, and productivity—then, in a just and democratic society, opportunity cannot be denied for students with disabilities.
In the discussion that follows, we examine practices intended to improve access to the general curriculum for students with low-incidence disabilities. For many reasons, this population presents unique and daunting challenges for all committed to meeting IDEA ’97’s mandates. We follow a question-and-answer format in order to address key issues and to arrive at basic understandings concerning students with low-incidence disabilities. Since much of this report refers to a UDL framework, UDL will be defined.
Low-incidence disabilities are then contrasted with high-incidence disabilities to uncover some distinguishing characteristics of this population. Next, particular challenges confronting schools and communities that endeavor to serve these students and their families are examined. We then concentrate on identifying the needs of students with low-incidence disabilities. We also present disability-related needs that are unique to a particular category of specific disability and other, more generic needs that cut across categories.
The reason for this is the fact that IDEA retains the use of specific disability categories for eligibility determination and classification. Over the past few decades, however, both professional literature and actual practice have supported alternative approaches for defining and classifying students with low-incidence disabilities. Thus, in order to provide students with low-incidence disabilities with appropriate and effective services, supports, and ancillary aids, it is necessary to examine alternative frameworks, differing from those traditionally in place, for understanding needs.
Specialized curricula and instructional practices that hold particular promise for students with low-incidence disabilities are presented. Just as it is important to understand need from multiple perspectives, so too must curriculum and instructional practices be understood as meeting both unique as well as shared needs among students with low-incidence disabilities. We focus on curricula and practices that are highly specialized as well as those that address more typically shared needs.
Because IDEA requires access to the general education curriculum for all students, it is necessary to examine ways in which specialized curricula and instructional practices can support or otherwise connect with broader approaches for improved access, participation, and progress for students with disabilities. Curriculum is highly complex. Historically, it has been examined through many different lenses. The complicated nature of curriculum theory and practice makes it difficult to envision innovative ways of making it accessible for students with disabilities.
Thus, we will also examine and attempt to demystify some of that complexity. Instructional practices presented in the context of our discussion are intended to bring an effective focus to eliminating or reducing curriculum needs associated with low-incidence disabilities. As with the consideration of need, curricular options and instructional practices can also be both highly specialized to a specific disability and highly generic across disabilities. For example, approaches for engaging students who are blind or deaf can be quite unique to those disabilities, given the varieties of existing communication modes.
Other approaches can be quite generic, involving, for example, applied behavior analysis or systematic instruction. After grounding in student need, curriculum, and instructional techniques, we examine models for collaborative planning. Students with low-incidence disabilities require services and supports beyond the classroom. These may intensify at various transition points throughout a life p and broaden out to include an array of community agencies. We examine the IEP in turn as a tool for pulling services together in support of access to the general curriculum.
We then focus on approaches for enabling students with low-incidence disabilities to participate in state- and district-level assessment systems. Finally, we conclude with a consideration of how access to the general curriculum can be improved for students with low-incidence disabilities through the application of principles of universal design. I. What is Universal Design for Learning (UDL)? A major premise of this report is that access to the curriculum for students with low-incidence disabilities is greatly enhanced by universal design.
Universal Design for Learning (UDL) is a particular framework that applies to education. More specifically, UDL is an approach that can guide curriculum reform. A universally-designed curriculum includes multiple means of representation (to allow various ways of acquiring information and knowledge), multiple means of expression (to allow alternatives for demonstrating knowledge), and multiple means of engagement (to challenge appropriately, to motivate, and to allow learners to express and participate in their interests). A number of current contrasting approaches to universal design will be described.
We conclude with an explanation of UDL. This will allow the reader to keep UDL in mind while progressing through subsequent sections until UDL solutions for curriculum access are more closely examined in our conclusion. Origins of Universal Design Architecture reveals the extent to which humankind can establish dominion over the natural environment by harnessing resources that it has to offer. Architectural design can be subjected to all manner of criteria, including beauty, convenience, utility, durability, safety, and even exclusivity.
Only in recent times has the criterion of exclusivity been successfully challenged. As populations grew, built environments afforded travel and facilitated commerce. The need for standards in architectural design became apparent as built environments became interconnected. Architects needed to consider the preferences and capabilities of those who would access built environments. In more recent times, users of built environments were living longer and, therefore, functioning with less mobility and stamina. Notions of democracy and community were transforming views of belonging and participation.
During the 1960s, social movements that began in Europe around such concepts as normalization, deinstitutionalization, and communitization were beginning to have a profound impact upon those who would advocate for the disabled in the United States. Thus, the needs of people who would potentially access the built environment were beginning to be understood as complex and diverse. Universal Design in Architecture The passage of the Vocational Rehabilitation Act of 1973 essentially outlawed discrimination on the basis of disability.
So far-reaching was this piece of federal legislation that it took nearly three years for a beleaguered Congress to write the regulations that would ostensibly remove architectural barriers from all publicly supported buildings and properties. During this era, universal design in architecture was born. Like the dream of building inclusive communities for all to enjoy equally, universal design is an ideal with a process to ensure maximum participation for all. The challenge of removing physical barriers and retrofitting solutions to barriers proved to be a costly and cumbersome process, often yielding unsatisfactory results.
Universal design sought to embed solutions into features at the design level—features that would benefit all, not merely accommodate the few. Curb cuts intended for wheelchair users, for example, were also found to be helpful for users of baby strollers, shopping carts, skateboardes, among others. In 1990, the Americans with Disabilities Act (ADA) extended the prohibition against discrimination on the basis of disability to the private sector, requiring all entities doing business with the public to make every reasonable accommodation in providing access.
Accessibility standards, while necessary for guidance and compliance monitoring, can appear onerous or threatening in light of the fact that they are government regulations, particularly when coupled with the public’s misperceptions regarding disability. Universal design, as envisioned by Ron Mace and his colleagues at North Carolina State University’s Center for Universal Design, was intended to promote the design of products and environments that would appeal to all. North Carolina State’s Principles of Universal Design are listed below in brief form (without associated guidelines). PRINCIPLE ONE: Equitable Use The design is useful and marketable to people with diverse abilities. PRINCIPLE TWO: Flexibility in Use The design accommodates a wide range of individual preferences and abilities. PRINCIPLE THREE: Simple and Intuitive Use Use of the design is easy to understand, regardless of the user’s experience, knowledge, language skills, or current concentration level. PRINCIPLE FOUR: Perceptible Information The design communicates necessary information effectively to the user, regardless of ambient conditions or the user’s sensory abilities.
PRINCIPLE FIVE: Tolerance for Error The design minimizes hazards and the adverse consequences of accidental or unintended actions. PRINCIPLE SIX: Low Physical Effort The design can be used efficiently and comfortably and with a minimum of fatigue. PRINCIPLE SEVEN: Size and Space for Approach and Use Appropriate size and space is provided for approach, reach, manipulation, and use, regardless of user’s body size, posture, or mobility. ” Principles of Universal Design, version 2. 0 (Center for Universal Design, North Carolina, 1997).
Application of these principles has established a framework for developing design standards in architecture, as well as for creating consumer products, that permit the greatest degree of access and usability for the widest possible range of individuals. Today, millions of Americans with disabilities enjoy access to buildings, restaurants, movie theatres, sporting events, transit properties, walkways, commercial vehicles, and bank teller machines—to name only a few venues that were once inaccessible to them.
Wheelchair users, once limited to home instruction or restricted to special school buildings, now attend their neighborhood schools alongside their non-disabled agemates. However, although physical access to classrooms and other education facilities is an important first step toward educational equity for the disabled, it is not sufficient to ensure that all students with disabilities have equal access to the general curriculum or enjoy comparable opportunity to derive benefit from what school curriculum has to offer.
Additional changes in the classroom environment and in the curriculum itself are also required in order for full equity to be achieved. Universal Design in Education Universal design in architecture recognized the importance of building environments that were more in line with the needs of an aging population and the requirements of those persons with disabilities who were being welcomed into the general community during the 1970s.
In the 1980s, attention was brought to bear on the rapidly increasing diversity of America’s students through the publication of A Nation At Risk, a report presented to the U. S. Department of Education by the National Commission on Excellence in Education. According to this report, our nation’s schools—particularly in urban centers—appeared ill-equipped to prepare a diverse population to compete successfully in an increasingly global economy. The findings of the Commission spurred a wave of reform initiatives ith enabling legislation aimed at raising standards and outcomes for our nation’s most under-served students. More recent federal legislation, such as No Child Left Behind (NCLB, 2001) and the Individuals with Disabilities Education Act (IDEA, 1997; 2004), seeks to build one education for all students, improve teacher quality, align curriculum with standards, measure outcomes at multiple points, and hold schools accountable for student performance.
For no child to be excluded from—or left behind by—the general curriculum, the curriculum itself must be examined and re-designed from a fresh perspective, much in the same way that buildings, environments, and products were critically examined by the original advocates of universal design in architecture resulting in important and lasting changes in building standards. Colleagues at the University of Connecticut’s National Center on Postsecondary Education and Disabilities have developed a set of principles building upon and extending the principles originated at North Carolina State’s Center for Universal Design.
Note that their educational design principles are essentially the same as those outlined by North Carolina State for architectural and product design (with the addition of principles 8 and 9—community of learners; instructional climate). Their new principles address more educational constructivist perspectives regarding communities of learners and a climate of high expectations and social interaction. Together, these principles set a framework for what Scott, McGuire, and Shaw (2001) call Universal Design for Instruction (UDI).
Application of these principles allows postsecondary institutions in particular to dramatically widen the accessibility of course offerings by designing accommodations into course structures rather than retrofitting a series of educational work-arounds to try and meet the specialized needs of individual students after course materials have been prepared. UDI principles are listed and defined in Appendix B. Universal Design for Learning (UDL) Calls for critically examining curriculum from a universal design perspective have come from many quarters (King-Sears, 2001; Hitchcock, 2001;
Nolet & McLaughlin, 2000; Pugac
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