Syracuse University Magazine

Access and Opportunity

A pioneer in inclusive education, Syracuse University continues to advance the rights of people with disabilities 

By Christine Yackel

August JankowskiAugust Jankowski ’46, L’48 was blinded in a hunting accident when he was a teenager. But that didn’t stop him from earning undergraduate and law degrees from Syracuse University, serving as president of his junior class, and presiding as a city court judge for 32 years. Jankowski’s success was due, in part, to SU’s commitment to open access for all students, no matter what their personal circumstances or life experiences may be. “Syracuse has a tradition of seeking to bring about change one life at a time, as well as on the broadest possible spectrum,” says Chancellor Nancy Cantor. “That distinctive legacy is particularly prominent in our long and proud history of public scholarship and activism in disability rights, including the recognition that people with disabilities bring with them a wealth of experiences, good and bad, that contribute to making SU a better and stronger institution.”

The number of students with disabilities enrolled at SU has increased steadily since Jankowski and his guide dog Lou attended class. This year, approximately 1,150 students registered with the Office of Disability Services, and nearly 800 students receive such services as note-taking, sign language interpreting, and text-to-voice course materials. Although all universities are legally required to provide these services, SU was an advocate for inclusive education—which welcomes and values difference—long before it was mandated by federal law. From establishing a special education department in the 1940s to creating a center for inclusive higher education today, Syracuse has earned a reputation for visionary leadership in the study and promotion of education for all students. “SU’s history in the field of disability is fascinating,” says Wendy Harbour, the Lawrence B. Taishoff Assistant Professor of Inclusive Higher Education, “from accommodating returning World War II veterans to advocating for deinstitutionalization and inclusive K-12 education, and now leading the way in offering full and equal participation in higher education for students with a wide range of disabilities.” 

Road to Reform

Syracuse’s rise to national and international prominence in the field of disability began in 1946 with the creation of the Department of Education for Exceptional Children under the direction of William Cruickshank, a pioneer in the education of children with brain injuries, learning disabilities, and cerebral palsy. In 1966, Burton Blatt, dean of the School of Education from 1976 until his death in 1985, was heralded for publishing Christmas in Purgatory, a groundbreaking photographic exposé of the horrendous abuses of people with mental retardation who were locked away in institutions in this country. “Burt was an extremely moral person, and he couldn’t understand how human beings could let this happen to other human beings,” says Steven Taylor G’77, Centennial Professor of Disability Studies in the School of Education. “Like many reformers of his time, Burt was haunted by the Holocaust, and came to realize that we have a collective societal responsibility to provide better care for people with disabilities.”

Blatt didn’t think it was sufficient to only train teachers and study disability issues. He believed Syracuse University should also have a positive impact on the world by promoting progressive disability policies and advocating for change. “Burt used to say, ‘When Lincoln freed the slaves he didn’t command a study to see if the slaves would be better off free—he knew it was the morally right thing to do,’” Taylor says. “Acting on his vision of a fully inclusive society, Burt established the Center on Human Policy—the first institute in the nation to study and promote ways to deinstitutionalize people with disabilities and open K-12 schools to children who would otherwise be segregated in schools for the disabled.” 

From its beginning in 1971, the Center on Human Policy put scholarship in action, starting the first group homes for people with mental retardation in Syracuse and advocating for school inclusion long before the term even existed. In fact, Blatt and his colleagues, Wolf Wolfensberger and Gunnar Dybwadare, are credited with popularizing such concepts as open settings, mainstreaming, normalization, and least restrictive environments in their efforts to describe a vision of society where people with disabilities are fully included—not merely accepted. “A lot of university centers define their mission as research, but we have never seen a contradiction between doing rigorous research and advocating for a fully inclusive society,” says Taylor, who joined the center as a graduate student and now serves as its director. Following the center’s successful efforts to close the Syracuse Developmental Center in 1998 and move its residents into the community, a Syracuse Herald-American editorial stated: “For decades, Syracuse University has been a source of enlightenment and energy in forging new paths to integrate people with disabilities into the mainstream. Its Center on Human Policy is a laboratory for progressive policies and practices that continues to have a national and international impact.” 

Professor Douglas Biklen G’73, now dean of the School of Education, established the Facilitated Communication Institute in 1992 to research and promote a new method by which non-speaking children and adults with autism and other developmental disabilities can learn to communicate by typing on a computer keyboard, with the ultimate goal of communicating unassisted. In 2004, the Institute on Communication and Inclusion, as the institute is now known, produced Autism is a World, an Academy Award-nominated film about a young woman whom everyone thought was severely retarded. But once she had a way to type on a keyboard without any help, people realized she was very competent, and she is now completing a bachelor’s degree in history. “It’s impossible to know what another person thinks or feels unless they have a way to express it,” Biklen says. “I’ve come to realize it’s important for us to presume a person is competent and then look for ways to help them overcome obstacles. That puts the burden on us as educators to come up with effective strategies.”

Around the time Biklen was researching new communication strategies for people with autism, the School of Education created the nation’s first inclusive teacher training program and a graduate program in disability studies. An undergraduate degree in special education, which concentrates on teaching methods and curriculum, is still offered, but the school has shifted toward inclusive teacher training, which focuses on finding ways for students with disabilities to be educated with their nondisabled peers. On the graduate level, the disability studies program brings together the social sciences and humanities to look at the cultural, political, economic, and social meaning of disability, social policy, and popular culture’s representation of disability as a form of difference. “We also have an undergraduate minor in disability studies, and there’s great interest in creating an undergraduate major as well,” Biklen says. “It’s a good foundation for many professions, especially medicine and law.” 

Full Participation

The Rehabilitation Act of 1973 is a landmark piece of civil rights legislation that requires all colleges and universities to provide architectural, academic, and programmatic access to students with disabilities. SU established the Office of Disability Services (ODS) to address the daily challenges faced by students with a broad spectrum of physical, sensory, mental health, and learning disabilities. According to Stephen H. Simon G’71, director of ODS, so far this year, the office has administered 5,000 exams; produced nearly one-half million pages of electronic and alternate formats of text for students who have difficulty accessing standard printed materials; provided note-taking assistance in more than 800 classes; and hundreds of hours of sign language interpreting and computer assisted real-time translation known as CART. “We also provide advocacy and counseling services that focus on the specific, disability-related needs of students,” Simon says. “Our goal is to promote inclusion of students within all aspects of university life.”  

ODS frequently collaborates with departments and offices across the campus to work on issues related to architectural and technological accessibility, housing and residence life, career services, student activities, libraries, international study, legal mandates, and access to University events. “We encourage a ‘decentralized’ approach whereby University departments incorporate meeting the needs of people with disabilities into the services they provide on a daily basis,” Simon says. “Certainly there’s a learning curve involved, but as departments become more effective at providing accommodations universally, then the need for an office like ODS will diminish. That should be our goal.”

amandaCollege of Human Ecology graduate student Amanda Fallon says she looked into what disability services were available before deciding to come to SU and found ODS very accommodating. Now in her second year of study in the Marriage and Family Therapy program, Fallon, who has cerebral palsy and uses a wheelchair, is granted double time to take exams; a reader to help read exams; a scribe to write down exam answers; someone to take notes during classes; and all of her books on CD. “Syracuse is one of the most inclusive schools I looked at,” says Fallon, a member of the SU chapter of the Phi Kappa Phi honorary society. “Some of the other colleges don’t have note takers, and many of them told me to just bring a recorder to class. That would be difficult because then I have to listen to the entire lecture over again.” And when Fallon pointed out a problem with access, she was pleased with the University’s response.  “I asked that automatic door openers be installed on the women’s restrooms in Lyman and Sims halls, where most of my classes are held,” she says. “They were put in really fast, so I was beyond thrilled.” 

Not all disabilities are easily discernible. P.J. Alampi ’14, like many students, struggles with a hidden disability that needs to be addressed. “I’m reading disabled,” says Alampi, who is pursuing a double major in policy studies and broadcast journalism. “I read slower than the average student, so my first priority was to find a school with the academic program I wanted that could accommodate my learning disability. I knew Syracuse had good disability services, but I had no idea they were so extensive.” Alampi, who requires extra time on tests and uses books on tape, meets weekly with his ODS advisor to put together a plan that will enable him to achieve academic success. He is also learning how to advocate for himself. “At first I was nervous about reaching out to my professors because I didn’t think they would react well,” Alampi says. “But every professor I talked to was very supportive, and I realized it’s not just ODS that deals with disabilities—the entire campus is aware that students need help and are really open to it. I’m grateful I have so much support.”

 The Americans with Disabilities Act, signed into law in 1990, is another legal milestone mandating an end to discrimination against individuals with disabilities, and the Education for All Handicapped Children Act, originally passed in 1975, was reauthorized in 2004 as the Individuals with Disabilities Education Act to provide educational services to the more than 6.5 million children with disabilities nationwide. However, laws do not automatically ensure compliance or educate the public. In 1980, the College of Law created the Public Interest Law Firm to offer free representation to people with disabilities who face discrimination. The firm, now known as the Disability Rights Clinic, offers law students opportunities to work with people with disabilities who have pressing legal problems that are not being adequately addressed. 

Law professor Michael Schwartz G’06, director of the Disability Rights Clinic, says he and law students Renee Yaworsky L’12 and Joseph Juhn L’12 are particularly proud of a recent case. An elderly deaf woman, who was a resident of a local nursing home for the last seven years, retained the clinic to contest the facility’s failure to provide her with effective communication access under state and federal law. “The nursing home failed to provide our 80-year-old client with meaningful access to social events, games, lectures, and outings,” says Schwartz, who is deaf. “We tried to convince them to do the right thing, but it was turning into a battle royale. So instead of suing the local nursing home, we were able to get our client into a facility in Columbus, Ohio, where the residents are all deaf and the staff can sign. My students and I feel absolutely wonderful that our client has a new life in a facility where she can communicate and make new friends. We feel blessed to have been a part of such a positive transformation in a person’s life.”

Forward Momentum

burton blattBurton Blatt’s legacy continues to grow and evolve through the efforts of dedicated students, faculty, and staff who advocate tirelessly for a more inclusive world. For example, School of Education professors George Theoharis and Julie Causton-Theoharis created the Schools of Promise initiative, which works with teaching and administrative teams in two Syracuse schools—Salem Hyde Elementary and Roberts K-8—to rearrange the resources at hand so all children have an inclusive education in a general classroom setting with their peers. As a testament to the success of the Schools of Promise philosophy, the New York State Education Department Office of Special Education named Salem Hyde a model school for inclusive special education delivery that will now mentor other schools in need of assistance or intervention with implementing inclusive practices. The local chapter of Say Yes to Education, which offers comprehensive support services to increase graduation rates for Syracuse city school students, has shown interest in the Schools of Promise success and has discussed how to take the initiative district wide. “Schools of Promise offer a philosophical lens for making decisions about staffing and class placement,” Theoharis says. “Some think it is counter-intuitive, but we’ve found that if you include the students with the most challenging disabilities in the general classroom, behavior problems improve and class achievement goes up.”

As an expansion of the work of the Center on Human Policy, the School of Education, the College of Law, and the College of Human Ecology created the Center on Human Policy, Law, and Disability Studies in 2004. Co-directed by Taylor and law professor Arlene Kanter, the center brings together a network of student organizations, centers, academic programs, and research initiatives that seek to promote the rights of people with disabilities. “Disability issues have always had a strong presence in the School of Education, but we needed to create a cross-college collaboration to increase our visibility throughout the University,” Taylor says. “Our mission is to promote training programs, public education, and advocacy efforts on behalf of, and with, people with disabilities.” Taylor and Kanter also developed a unique joint degree program that enables a student to earn a law degree and a master’s degree in disability studies at the same time.

Founded in 2005, the Burton Blatt Institute (BBI) was another leap forward in bringing visibility and new perspectives to disability issues locally, nationally, and internationally (see "Inclusive Impact"). Under the direction of University Professor Peter Blanck, BBI has assembled a multidisciplinary team to identify problems, test solutions, contribute to law and public policy, and engage the community to develop public and private partnerships that advance the social and economic inclusion of people with disabilities. BBI is creating new models of inclusive entrepreneurship in collaboration with county government, community groups, and the Whitman School of Management. BBI, for instance, partnered with Whitman professor Mike Haynie, who established the Entrepreneurial Bootcamp for Veterans with Disabilities (EBV) to provide wounded U.S. soldiers with the skills and knowledge to start their own businesses. Launched in 2007, Whitman’s EBV has expanded to include six universities nationwide, offering training in entrepreneurship and small business management. EBV is recognized as a national model for economically empowering veterans who have served in Afghanistan and Iraq.  

The most recent advancement in the disability rights movement at SU is the creation of the Lawrence B. Taishoff Center for Inclusive Higher Education, established in 2009 (see "Higher Expectations"). The center conducts research and provides support to college students with intellectual disabilities who traditionally were not considered for higher education, as well as students with learning disabilities, such as dyslexia. “Other centers in higher education are focusing just on students with specific types of disabilities because there is such a need,” says Professor Wendy Harbour, executive director of the Taishoff Center. “We’re the only center in the country looking at students with disabilities—including intellectual disabilities—at the college level in a more general sense.”

The Inclusive Campus

Working toward a more inclusive society is the right thing—and practical thing—to do. Based on current estimates, approximately 24 percent of SU alumni have a family member with a disability; 18 percent of students on campus will become temporarily disabled during their four-year college careers; Baby Boomers will experience a variety of late-life disabilities in unprecedented numbers; and the Department of Veterans Affairs and Department of Defense project that 30 percent of veterans returning from Afghanistan and Iraq—2.5 million to date—will have enduring physical and/or psychological disabilities. Implementing universal design principles, which refer to barrier free buildings, products, environments, and curricula that are inherently accessible to everyone, is the best way to avoid costly retrofitting and creates a beneficial environment for all people during all stages of life. Examples of universal design are curb cuts and sidewalk ramps, which are essential for wheelchair users, but are also convenient for individuals pushing baby strollers, making deliveries, and riding bicycles. And with an unemployment rate of 65 percent among Americans with disabilities, ensuring that postsecondary education is universally accessible is cost effective as well. 

brian mclaneBrian McLane ’69 was born with cerebral palsy at a time when most children with disabilities were institutionalized. His parents struggled to raise him at home and fought for his right to attend public high school. He continued his education at Syracuse University, where he earned a bachelor’s degree in speech and dramatic art. He recalls asking his counselor why the vocational rehabilitation program was willing to pay for his education. “My counselor said that without a degree the likelihood of my ever going to work was nil, so at least by giving me an education, they were giving me an opportunity to have a career,” says McLane, founder and president of Paradigm Solutions, a company that works with clients, including SU, to move beyond compliance. “The disabled child becomes the disabled adult who won’t be able to depend on mom and dad forever. SU is poised to play a critical role in helping that child gain independence in the most effective and humane way.” 

Higher education is a proven pathway to independence and success—particularly for someone with a disability who may have fewer career options. With that in mind, SU has redoubled its commitment to attract students with a wide range of physical and intellectual disabilities by providing the supportive and nurturing environment they need to thrive once they get here. “Like everyone else, students with disabilities are looking for a good educational experience,” says Eric Spina, vice chancellor and provost. “We hope they will choose to come to Syracuse because we offer outstanding academic programs and a welcoming campus community. Increased enrollment of students with disabilities will happen naturally if we lower all barriers and work to make our campus more inclusive and accessible.” 

In 2005, Chancellor Cantor set up a task force to identify ways the University can bring the vision of what a truly inclusive campus should be into reality. The task force recommended promoting the University’s commitment to disability as an integral aspect of diversity; creating a culture of inclusion by recruiting, hiring, and retaining more faculty and staff with disabilities; making a long-term financial commitment—as part of the current $1 billion capital campaign and beyond—to ensure a fully inclusive and accessible campus; and establishing a disability cultural center that would function as an umbrella under which social, cultural, and educational programming related to disability could take place. 

Thomas Wolfe G’02, senior vice president and dean of student affairs, says he was intrigued by the idea of the center—which would be housed within the Division of Student Affairs—because it builds on existing resources to provide a place for students to hang out and share ideas and experiences. “Ideally, the center would be situated in a highly visible central location on campus with full-time staffing,” Wolfe says. “I’m of the philosophy that if you can’t describe it, you can’t fund it. So let’s get busy describing it.” 

To move the proposed disability cultural center  forward, the Division of Student Affairs, the School of Education, and the Taishoff Center engaged Liat Ben-Moshe G’11, a doctoral candidate and instructor in sociology, disability studies, and women’s studies, to coordinate planning for the center and create momentum for its implementation. Ben-Moshe looked at other resource center models, collaborated with a variety of campus constituencies, put together a board of directors to advise on programming and logistics, and will have a budget and implementation plan in place by the end of the academic year. “The cultural center is a way of making SU more responsive to not just the needs of students with disabilities, but also the need for a disability-friendly culture,” Ben-Moshe says. “Our vision is that the center will be a hub of activity surrounding disabilities in a proactive way, and that it will help reduce the stigma around disability—it’s all about social change.” 

The disability cultural center is an important step toward creating a campus environment that is comfortable with disability. “So often disability evokes feelings of pity and great sympathy, and we think about people overcoming their disability rather than society changing the impediments that it has imposed on them through public policy or other kinds of practices,” Biklen says. “A family who has a child with a disability figures out ways for that child to be included in all aspects of family life—the disability is just seen as part of what is normal. We want to create a similar environment at SU where students with disabilities feel like they are fully participating members of a caring campus community.” 

 

 

SU alumni and friends are invited to help shape and support a new comprehensive campaign to keep Syracuse at the vanguard of disability rights and inclusion. For more information, contact David Murray at 315-443–5178 or drmurray@syr.edu. 






Research: Examining Barriers to Medical Services

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School of Social Work professor Nancy Mudrick (left) and colleague Mary Lou Breslin of the Disability Rights Education and Defense Fund demonstrate how an accessible scale works. Too few medical offices have such scales and other equipment that accommodate people with disabilities.

Photo courtesy of Nancy Mudrick

Researcher: Professor Nancy Mudrick, School of Social Work, College of Human Ecology

Project: Determining the physical accessibility of medical providers’ offices.

Issue: Despite sufficient documentation that the quality of health care for people with disabilities is negatively affected by physical and programmatic barriers in doctors’ offices, estimates that accurately depict the proportion of providers that offer full access to persons with disabilities don’t exist. 

Background: This finding was one of several lessons learned by Mudrick and a team of colleagues led by the Berkeley, California-based Disability Rights Education and Defense Fund (DREDF) in preparing the 2009 report, “The Current State of Health Care for People with Disabilities,” for the National Council on Disability. The absence of this information is significant because the 1990 Americans with Disabilities Act requires doctors’ offices to provide equal access to medical services. The 2010 Affordable Care Act (a.k.a. health care reform) requires the Food and Drug Administration (FDA) and the federal Architectural and Transportation Barriers Compliance Board to develop standards for accessible medical exam equipment, and the Department of Health and Human Services must collect data on the number of providers with accessible facilities and equipment.  

Access Data: To address this information gap, Mudrick and DREDF colleagues—senior policy advisor Mary Lou Breslin, attorney Silvia Yee, and School of Social Work graduate research assistant Mengke Liang G’10—created what is perhaps the largest single dataset nationally on provider office access, with information on 2,389 provider sites serving more than one million Medicaid-insured patients in California. With support from a grant from the California Health Care Foundation, they obtained the data from five California-based Medicaid managed care plans that serve the elderly and people with disabilities and have voluntarily assessed the physical access of providers’ offices since 2006.

Among their most disturbing findings: Only 8.4 percent of providers’ offices have height-adjustable examination tables, and only 3.6 percent have accessible scales. Consequently, many patients are examined seated in wheelchairs or lifted onto exam tables by inadequately trained nursing staff. Many others are never weighed. “Additionally, many patients with disabilities don’t seek treatment because of the access barriers, which is costly to the individual and to the health care system,” Mudrick says.

Impact: Mudrick, who has worked with DREDF for 14 years on evaluation and policy, and DREDF colleagues are using these findings to educate and enact policy. The state of California has decided that all Medicaid managed care plans will conduct on-site accessibility surveys of providers. The study’s findings influenced the structure of the new state instrument. Their findings also have been shared with the FDA. “We want to move national policy so that people with disabilities have equal access to quality health care,” Mudrick says. —Michele J. Barrett



Research: Mobile Advocacy

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Researcher: Professor Alan Foley, Department of Instructional Design, Development, and Evaluation, School of Education

Project: Developing iAdvocate, a free iPhone application (app) that serves as an information resource for parents of school-age children with disabilities.

Issue: Parents of children with disabilities can be overwhelmed in interactions with teachers and other school professionals, especially if they are not familiar with their rights under the Individuals with Disabilities Education Act, a federal law that ensures services to children with disabilities, and with appropriate resources.

Focus: Foley is an expert on assistive technologies, instructional and learning space design, and web accessibility/usability, with an expanding interest in mobile apps. iAdvocate is designed to provide readily accessible information that will help parents build advocacy skills, enhancing interactions with school professionals. 

Features: The app, which was released this spring, contains three sections: strategies, a compilation of approaches that parents can pursue as advocates; resources, which lists and, where possible, links to such references as laws, books, articles, web sites, video presentations, and organizations that provide information on inclusive education; and, responses, which features simulated interactions, such as replies to common statements made by school professionals regarding services and accommodations for children. 

Partners: Foley received support from and collaborated with the School of Education, the Center on Human Policy, Law, and Disability Studies (CHPLDS), and the SU Parent Advocacy Center (SUPAC), an affiliate of CHPLDS that promotes parental involvement in the inclusive education of their children with disabilities. Foley incorporated the project into his classes last spring and fall and, working with a team of School of Education graduate students, conducted focus group studies with SUPAC parents, developed content, designed a prototype, and used feedback to improve the final product.

Impact: The idea behind iAdvocate, Foley says, is to empower and engage parents, making them aware of their rights and a variety of resources. By expanding their knowledge, they are better prepared to partner with school professionals and work collaboratively to achieve positive outcomes for their children’s education. The app also connects parents to the SUPAC web site, allowing for more exchanges in information and ideas. Foley plans to create updates for the app and explore and develop other apps and models for cross-platform use. “We hope it can improve access and services for children with disabilities and provide help and support for their parents,” he says. —Jay Cox









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