Post-secondary Education Disability Services in the United States

Jim Marks
Director of Disability Services for Students
University of Montana
And
President Elect
Association on Higher Education And Disability

Web Posted on: September 30, 2008

My very first student with a disability was an angry man. His loud knock on my office door startled me from my musings about the new job. The year was 1988, and I had recently been hired as the Coordinator of the Disabled Student Services at the University of Montana.

I remember thinking about how little support was available for students with disabilities. The entire office consisted solely of me working half time, a three hour per week student employee, and an office that contained little. The office, converted from a basement dormitory room, included a battered wooden desk, a rickety chair, a file cabinet with less than one-fourth a drawer's worth of materials, and a closet that contained only poster paints and poster boards. There was not even a computer.

At my door stood a young man who was upset about not being able to read his textbooks. He told me that my predecessor had promised him talking books. He said he had a learning disability that made reading extremely slow and difficult, and that, when he listened to audio books and read the print at the same time, he could understand what he was reading and could keep up with his hefty college reading workload.

I told the student I had no magic to offer, but that I would work with him to make sure he could read on equal footing with his peers. I explained it would take liberal amounts of advocacy and time, but that we would get there if he were patient and willing to work with me. I rolled up my sleeves and got busy doing the work of making sure the University of Montana was accessible to and usable by otherwise qualified students with disabilities.

It took about two years to get the student what he expected. We slowly acquired and applied disability supports that granted him enough access to meet and exceed academic expectations. Several tools helped us get the job done. We used audio recordings from Recording for the Blind and Dyslexic, a library of audio recordings for students with print disabilities. We also used computer scan and read programs, human readers, and other such tools to cobble together a diverse toolbox to gain access to print. The student would read and listen at the same time, and the combination gave him a firm foundation for his studies. Support for the student came from Montana Vocational Rehabilitation as well as the University. Rehabilitation assisted the student in many ways, including financial and technical support for his studies and assistive technologies. While the University assured an accessible learning environment, rehabilitation took care of the personal services necessary to achieve success. As a result, he was able to graduate with a teaching degree.

I lost touch with the former student. Then, about ten years later, there was another knock at my door.

"What brings you to campus," I recall asking the former student. He replied he was on campus to attend the campus career fair for educators. He was wearing a handsome suit and tie, and he carried himself with the dignity of a competent professional. Of course, I assumed he was looking for a job. Not so, he said.

"I am a superintendent of a Montana school district," he said, adding that he was attending the career fare to hire teachers for his program. My mouth dropped open in surprise. Quickly, however, I recovered, and I felt a lightness of step and a twinkle in my eye with the realization that this young man was able to make something of himself. He became a leader, made possible, in part, by equal access to information through alternate formats to print.

Today, Disability Services for Students (http://www.umt.edu/disability/) is much larger and more effective than it was in 1988. In 1988, the office "served" 120 students with disabilities with a budget of about $13,000 per year. That budget, by the way, included my salary. Today, the officer serves about 1,000 students with disabilities with a budget of about $750,000 per year. Our office is located in an attractive, high-traffic, and central building of the University. We routinely graduate more students currently than we served when I first became a disability support professional in higher education.

I am blind. I use a long white cane, Braille, audio recordings, electronic text, and a variety of assistive technologies to function as best I can. For example, I am using a computer screen reader called Jaws from Freedom Scientific to compose this article. I use standard applications such as Microsoft Office 2007 and Jaws to write and communicate on equal footing with my peers. Blindness teaches me many things. I learned to reject traditional stereotypes about blindness and to think and act positively. I choose to be responsible in that I try to solve problems on my own. For instance, I do not expect or demand a barrier free environment. While access and support is vital, success depends more critically on one's individual power. Instead of waiting for others to do for me, I do for myself. In addition, along the way, I assist others in changing what it means to have a disability.

My office applies a social justice model in our service delivery system. Our focus is on the basic human and civil rights behind disability support offices in higher education. Without decent services, students with disabilities would experience discrimination based on their disabilities. The University must treat students with disabilities differently than it does other students in order to honor the rights of students with disabilities. When the University cannot assure full accessibility to our programs, we modify non-essential program elements so that students with disabilities can do the things that matter and that lead them to the realization of their academic goals.

The social justice model is catching on in the United States, but it is not universal in its application. Many US colleges and universities adhere to a different framework, the social welfare model of disability services. The social welfare model regards people with disabilities as the objects of philanthropy, charity and good will. Social welfare models stress "needs" rather than rights. Consequently, the social welfare model tends to take care of people, but it treats people with disabilities as less than equal and with paternalism.

The social justice approach works well in higher education. Thanks to civil rights laws in the United States such as the Americans with Disabilities Act of 1990 and Section 504 of the Rehabilitation Act of 1973, discrimination based solely on disability is illegal. We must assure an accessible learning environment. To this end, social justice works well and provides a dignified and forward-thinking approach.

My personal experience with a disability shows me that, in order to live the fullest life possible, individuals with disabilities choose or blend two options. Either we require an accessible environment or we require the kind of personal attitudes and skills it takes to achieve success. Put more bluntly, we either fix our environments or fix ourselves. Successful people with disabilities combine fixing environments and oneself together for the best effect. Over reliance on either option, results in dysfunction and failure.

Very pointedly, disability support services in higher education in the United States often rely too heavily on environmental solutions. Our profession frequently does for students what they can do for themselves. This leads to the creation of dependencies on others by people with disabilities. While we can certainly make higher education accessible, we cannot neglect what happens to students with disabilities when they graduate and join the world of work. College is the traditional place to learn new skills and to develop abilities. Therefore, disability support services are learning more about the elements of incorporating self-determination in our service delivery systems. We are also learning about the importance of building partnerships between students with disabilities, vocational rehabilitation agencies, and our offices.

My office went from "serving" 120 students with disabilities in 1988 to today's 1,000 students. The increase in enrollment occurred through very deliberate advocacy of many parts. The advocacy included filing civil rights complaints with the US Department of Educations' Office for Civil Rights, engaging state and local politics, and using the media. The entire advocacy was concentrated in a single entity that students with disabilities created. Standing alone against the powers of discrimination is not nearly as effective as gathering with others to end discrimination. Collective action works. Thus, in 1989, students with disabilities formed an advocacy group on campus called the Alliance for Disability and Students of the University of Montana (ADSUM). ADSUM leaders knew that students with disabilities were treated unfairly at the University of Montana. The leaders also knew that they needed several initiatives to affect positive change. With the guidance of my office and the guidance of many others, ADSUM launched a campaign that still amazes most.

The first effort ADSUM undertook was to file a complaint with the Office for Civil Rights of the US Department of Education. Five students with disabilities --- three wheelchair users and two deaf students --- used the national due process for disability discrimination relief. They complained of inaccessibility in campus facilities, a lack of qualified sign language interpreters for the deaf, and several other barriers. The Office for Civil Rights investigated the complaint and found multiple serious violations of disability rights in its 1990 letter of findings. The University admitted to the violations and implemented a remedy plan. All occurred prior to the adoption of the Americans with Disabilities Act. However, at that point in time, the United States was alive with a magical spirit of disability rights, and the local advocacy was bolstered by the national fervor for justice for its citizens with disabilities. ADSUM was not yet finished, especially since it wanted to go beyond complaints into other forms of advocacy.

ADSUM became very political. The advocacy group lobbied Montana officials and University of Montana authorities for disability access improvements. In one instance, ADSUM met with the Chairman of the Appropriations Committee of the Montana House of Representatives. The stories told by ADSUM members influenced the state legislator very much. In the 1991 Montana Legislature, the chairman successfully led an effort to give the University of Montana significant funding to build its Disability Services. The Appropriations Committee Chairman listened, understood, and took action that used state funding to build Disability Services for Students at the University of Montana.

ADSUM also took its issues to the print and broadcast media. In a very deliberate and relentless fashion, ADSUM told its stories in public forums. Previously unknown problems came to the forefront, and campus leaders found themselves influenced by public opinion that supported the cause of equal access by people with disabilities. The more disability articles and broadcasts that appeared in the media, the quicker campus responded.

ADSUM did a fantastic job of creating a more accessible campus. However, their advocacy alone would not have been enough to accomplish what was done on campus. The attitude of campus leaders made all the difference. University of Montana President George Dennison listened to the concerns of the advocates, and he responded with great respect, wisdom, and leadership. President Dennison rejected unsupportable concerns, and he embraced those he knew to be legitimate. Other campus leaders followed the President's lead. The motto of the University of Montana is "Lux Y VERITAS," which is Latin for "Light and Truth." The University could have resisted the advocacy. Many institutions of higher education do. However, the University of Montana welcomed the integration of its students, faculty, staff, and visitors with disabilities. Despite the progress, our campus remains far from barrier free. Daily, we still identify and eliminate barriers that deny or limit access to our programs by otherwise qualified people with disabilities. Much has been accomplished and much more remains to be done. Justice is a powerful force, and I have every confidence that the quest for justice will continue for as long as necessary.

Our program modification process begins with public notices. The University notifies everyone about program accessibility in a variety of ways. Notices appear on our application, our course catalogs, our websites, and other publications. Students approach Disability Services, and Disability Services responds with eligibility determinations, guidance, and service.

Disability Services assigns a Coordinator to each student with a disability based on the student's major or academic interests, not on the disability. The first question we ask students is, "What is your major?" Most disability services ask, "What is your disability?" We believe we start the program modification process with a more progressive question.

Next, the Coordinator and student decide whether the student is eligible for civil rights protections, and they identify the functional limitations of the disability that warrant reasonable modifications in University programs. The evidence for the process comes primarily from a structured interview of the student by the Coordinator. Coordinators ask a series of questions designed to pinpoint functional information. For example, Coordinators might ask whether the student's disability impairs the student's ability to take notes during a lecture and how the student plans to take notes. In many, but not all cases, evidence comes from diagnostic reports and other third party documents. Good diagnostic reports identify how the disability functionally limits activities, and they recommend modifications that might work for the student. For disabilities that are obvious, third party evidence is redundant. One does not require reports from medical doctors to know that wheelchair users require an accessible route of travel to their classrooms. Diagnostic reports for students with invisible disabilities such as learning disabilities or traumatic brain injuries are frequently vital parts of determining disability and its impact. The evidence gathering is accomplished on a case-by-case basis, and the entire process focuses on linking the impact of the disability to the modification requested. The evidence gathering, done in the most progressive manner, serves as an inclusive tool rather than to exclude.

Once eligibility is determined, then the Coordinator recommends a variety of program modifications that the student applies as necessary. Program modifications include extended testing time, alternate formats to print, academic adjustments, auxiliary aids and services, etc. In addition, Coordinators write a memorandum of verification of disability and its impact that students take to their instructors. The memorandum, which is addressed to instructors, serves as an official recognition of each student's right to reasonable modifications in instruction. There are no formal plans or contracts. Students are free to apply modifications as they see fit so long as the modifications are reasonable.

At all times, the University insists that students with disabilities meet program standards no matter whether they use reasonable program modifications or not. We never drop the bar by applying a lesser academic standard for students with disabilities. In fact, high expectations serve as a corner stone. No student has a right to a higher education in the United States. Rather, the civil right is to equal access and opportunity. Most students with disabilities succeed with higher education that is free of disability discrimination. Some do not. The goal is academic access, not success. The whole process requires strong communication, engagement, planning, follow-through, and cooperation.

Today's disability support services in higher education face many challenges that go beyond the elimination of disability discrimination. Most college disability support offices are about 30 years old, which makes our profession a relatively new industry. After we are successful in assuring first class citizenship for students with disabilities, what then lies beyond civil rights and beyond victimhood?

Good disability support offices strive to work themselves out of a job. Rather than delivering services in a way that requires students with disabilities to "need" our services, we should strive to liberate students. Good disability support offices balance the development of the student's autonomy while not making projects out of students. Students, should be given equal opportunities and all relevant information, and then they should be free to exercise their own choices even when the choice is not one the professional would make. Disability support professionals must exercise much restraint and encouragement. The more resourceful the professional, the better informed the student will be. However, students with disabilities will make mistakes and make poor decisions. Standing back while such things happen is the hardest professional act imaginable. It's also the essence of first class citizenship of people with disabilities.

Many misinterpret what I just said by assuming I am talking about a sink or swim approach. The assumption is that students have to succeed or fail without supports. On the contrary, developing student autonomy involves deep supports couched in clear, concise philosophies. For example, many of us are parents. We want our children to keep their bedrooms neat. Children often stray from what we want, and parents find themselves in a quandary. We could tidy the child's bedroom ourselves if the tidy bedroom is our goal. Most of us discern, however, that raising our child properly is more important than maintaining a tidy bedroom. We realize that we should emphasize the development of the child, which we hope will someday lead to the values behind being neat and tidy in our lives. The same sort of thinking goes into disability services. In the United States, we have a legal obligation not to discriminate. We also have an obligation to support student growth. Our job, therefore, is more than managing legal obligations. We exist to educate, and the education is very, very hard work with plenty of success and failures along the way.

College students with disabilities come to higher education with a good deal of baggage. Many are ashamed and actively hide their disabilities due to the shame. Others use emotions like pity to manipulate others. Still, other people with disabilities feel angry about their situations and how the world treats them. The anger can motivate change, but it can also lead to bitterness and cynicism. A growing group chooses to re-define disability as a characteristic that is ordinary and respectable. Disability, can be understood as something natural, and disability identity can open doors. People with disabilities choose how they feel about disability, and disability support professionals should do all we can to develop disability identity in its most positive context.

One of my biggest professional concerns centers on the role of vocational rehabilitation. When I went to college in the 1970s, vocational rehabilitation agencies provided most of the supports for college students with disabilities. At the same time, college supports were nearly non-existent. The reverse is true today. Most college students with disabilities have no relationship with a vocational rehabilitation agency. Things have turned around due to shifting attitudes about disability services and rights. Going back to the 1970s would not be good because there were so few students with disabilities in college then. Today's enrollment numbers are much larger. In fact, on many college campuses in the United States, students with disabilities comprise the largest minority in the student body. Based on the enrollment numbers alone, access to college is much better now than it was thirty years ago. Nonetheless, vocational rehabilitation seems to be pulling back from using higher education as a mainstay of their clients' Individual Plans for Employment.

To illustrate the changing roles of vocational rehabilitation and higher education, consider the debates over who pays for high cost auxiliary aids and services such as sign language interpreters. Interpreters are expensive. The enrollment of a small number of deaf students who use interpreters causes relatively large funding impacts. My office serves about seven deaf students, and the budget used to serve these students takes up close to 20 percent of our office's funding. Fortunately, my office shares interpreter expenses with Montana Vocational Rehabilitation. Other states are not so lucky. Many state agencies refuse to pay, and pressure to require colleges to pick up all the costs of serving any student with a disability is building. Regulations from the 1973 Rehabilitation Act require state vocational agencies to cover the costs of auxiliary aids and services in college for their clients. No legal language changes this precedent. However, many people in and outside of vocational rehabilitation and higher education believe that the Americans with Disabilities Act shifted the burden of paying for civil rights from vocational rehabilitation to colleges. In essence, prevailing attitudes expect higher education to do it all.

Putting debates about funding aside, society should analyze the consequences of such expectations. As noted earlier, college disability services focus on the accessible learning environment. Environmental fixes alone will never create true first class citizenship for people with disabilities. People with disabilities must think positively about disability, learn, and apply alternative techniques and personal responsibilities. Teaching people with disabilities how to fend for themselves used to be the backbone of vocational rehabilitation. When rehabilitation eliminates itself from its traditional role, people with disabilities become conditioned to the illusion that all disability problems are environmental. Under these conditions, people with disabilities become dependent on accessible environments even though inaccessibility remains a constant most everywhere anyone chooses to go. One can wait a long, long time for justice if one is dependent on accessibility alone to function.

Vocational rehabilitation is not alone in its shifting philosophies and practices. Disability support offices in higher education follow the same paradigm. Universal design best demonstrates the shift. Universal design developed as a facility planning consideration. Architects and engineers realized that the design of barriers in their facilities would shut people with disabilities out. With planning that eliminated barriers, people with disabilities could use facilities just like others would. The concept yielded much greater environmental accessibility. Disability leaders took note of universal design, and they adopted the philosophy and practice as a new way of understanding and interacting with the world. Universal design seemed to be saying that disability exists as a problem in the environment, not a problem residing within the individual. Suddenly, disability could be viewed outside traditional medical models in which society ignored environmental access and over-emphasized disability as a problem wholly belonging to the individual. Disability emerges as a social construct, not a medical issue. Thus, instead of a person with a disability being the problem, stairs and the lack of elevators became the problem. From the physical environment, universal design could be applied to other functions such as in instruction. Instead of blaming the student for not grasping course content, we now consider the teaching methods used, and we strive to design lessons that are free of barriers.

Universal design has its limits, and fortunately, the movement is evolving. The main limit to universal design is that which has been mentioned above. Universal design can over-emphasize an accessible environment and neglect self-determination. Universal design advocates are learning that environmental solutions are not always best and that balances between environmental and personal responses render the best effect. The combination strengthens society and its citizens. In order to be successful, people with disabilities must learn how to function in any environment, accessible or otherwise. In addition, accessibility does not take disability away. For example, I am blind and must learn how to be good at being blind to do with my life what I want to do with it. Where ever I go, no matter what I am doing, Access does not make my blindness go away.

There is another significant limitation to universal design, one that is often highlighted by the Disability Services Assistant Director. Dan Burke notes that universal design presumes what people with disabilities want from their environment. Someone has to make judgments about what must happen for universal design to occur. The presumptions can be paternalistic, and people with disabilities may find themselves depending on the kindness of strangers rather than on their own wits and abilities.

On September 25, 2008, President George Bush signed the Americans with Disabilities Act Amendments Act, often called the ADA Amendments Act. Congress passed the ACT by a landslide. Nonetheless, it is controversial. When Congress approved the Americans with Disabilities Act in 1990, it intended the civil rights to protect a broad class of citizens from disability discrimination. Courts, however, took a different view. In the vast majority of lawsuits involving disability discrimination in employment, courts decided that the people bringing the lawsuits did not have disabilities that met the definition of disability in the Americans with Disabilities Act. As a consequence, the United States rarely got to the question of discrimination. Some courts interpret disability so narrowly that people with amputations, mental retardation, and other widely recognized disabilities are not considered disabled by the Courts. It is a lawyer's game, and it allows disability discrimination to go its ugly way unchecked. For example, an employer could say that people with respiratory impairments should never be hired in their company. While most of us would recognize such sweeping statements as discriminatory against people with respiratory impairments, the employer's attorneys would likely argue that the person bringing the lawsuit is not disabled under the legal definition. Formerly, courts would almost always agree, and the discrimination would continue unabated. The ADA Amendments Act will restore Congresses original intent and get our courts to deal with the substance of discrimination. Now the United States will investigate denials and limitations of equal access and opportunities rather than centering decisions on who and who is not covered by the Americans with Disabilities Act.

It is important to note that this debate did not affect service to students with disabilities in higher education until very recently. Modifying post-secondary education programs for students with disabilities follows common sense approaches in which we link the modification to the impact of the disability. For example, if a student is deaf, we provide sign language interpreters. We would not provide interpreters for a student with a psychiatric disability unless that student is also deaf. For students who claim that a scratch is a disability, we provide band aids and never engage the debate over whether a scratch is really a disability. Higher education looks at the modifications requested and applies any that are reasonable and linked to the impact of the disability. In other words, definitions of who is protected have been relatively unimportant insofar as post-secondary education goes. The national dispute centers on employment, not education. Even though the bill involved compromise language from interested parties ranging from disability advocacy to business groups, some education spokespersons recently emerged to oppose the Americans with Disabilities Amendments Act. Organizations such as the American Council on Education, a group representing college presidents and administration, testified that it fears that too many will claim disability under the proposed new rules. My organization, the Association on Higher Education And Disability, (AHEAD) supports the ADA Amendments Act because we want to end illegal discrimination and because we are unwilling to use restrictive definitions as a reason for denying or limiting access to higher education by students with disabilities. Time will tell what will happen with the implementation of the ADA Amendments Act, but it is apparent that the United States has yet to address many disability issues in our country.

Speaking of AHEAD --- http://www.ahead.org/ --- I am very proud to be a leader in this forward thinking and acting organization. AHEAD teaches me a great deal about best practices in serving college students with disabilities. I remember well my first AHEAD conference in 1989. I was new to the profession and the ideas and possibilities discussed at the AHEAD conference guided the development of Disability Services at the University of Montana. AHEAD still shapes how my office conducts itself. I began my contributions to AHEAD in the early 1990s by serving as the Co-chairman of its Special Interest Group on Blindness and Visual Impairments. Four years ago, the AHEAD membership elected me as Treasurer. This year, I became the President Elect of AHEAD. For two years, I will serve in the capacity of President Elect. Then, for another two years, I will be AHEAD's President. AHEAD faced many years of growing pains, but today the organization emerges as a solid and well-respected voice. To demonstrate the respect, the US Congress specifically named AHEAD in the recently adopted Higher Education Opportunity Act. This law, in part, addresses access to college textbooks by students with disabilities. The United States is struggling with the balance between equal access to information by college students with disabilities and the copyrights of publishers. AHEAD hopes to find a solution that protects all parties, and our leadership was recognized in the new law itself.

AHEAD considers itself to bean international organization, but exactly how AHEAD will function on am international basis has yet to be worked out fully. As time goes, I predict that AHEAD will grow past concerns relevant only to the particulars of the United States, and broaden its scope to encompass other cultures, other societies. Certainly each nation will address disability in unique ways, but we need organizations like AHEAD to help us learn from one another. AHEAD's international growth will likely grow out of functional partnerships between nations rather than as a deliberate outreach effort from within the United States. For one thing, AHEAD leaders know that the United States does not have all the best ideas and practices. Many times, the United States must learn from others. Therefore, AHEAD's international development will occur one step at a time.

In conclusion, many say there has been no better time in history to have a disability. I believe this is true, but I also recognize that the promise of justice and equal rights for people with disabilities is not global in nature. Moreover, even in the United States, we face much to do before anyone can say that we realized our dreams. People with disabilities are learning how to be first class citizens, complete with all the rights and responsibilities that go with citizenship. Societies are changing what it means to have a disability, and the promise for greater and greater progress encourages a bright future.

Thank you! I can be reached at jim.marks@umontana.edu.