Impact Feature Issue on Postsecondary Education and Students with Intellectual, Developmental and Other Disabilities

A Prelude to Progress: Postsecondary Education and Students with Intellectual Disabilities

Author(s)

Meg Grigal is a Senior Research Fellow with the Institute for Community Inclusion, University of Massachusetts, Boston

Debra Hart is Director of Education and Training with the Institute for Community Inclusion

Sharon Lewis is Commissioner of the Administration on Developmental Disabilities, U.S. Department of Health and Human Services, Washington, D.C.

Given the current activity and recent coverage in some mainstream media around the issue of postsecondary education for individuals with intellectual disabilities, it would be easy to assume that this area is well established in terms of common values, philosophical foundations, data-driven practices, and widely available existing services. Evidence of progress abounds. There are now specific provisions supporting college access for individuals with intellectual disabilities in a federal law; unprecedented access to some forms of financial aid; a recent State of the Art 2010 national conference with over 300 participants; a Web site with databases on literature and existing programs; and, as a sign of the times, a Facebook and Twitter presence. These are all positive accomplishments and surely serve as significant markers toward progress.

However, for a young person with an intellectual disability in a town or state where the choice of going to college does not exist, these markers have little impact. In fact they may serve as a frustrating reminder of the paucity of available options. A constant refrain from students with intellectual disabilities and their families across the country is, "I want to go to college, but there is nothing available in my community. Can you help me? Do you know of any programs in my area?" Data from the National Longitudinal Transition Study-2 (NLTS-2) indicate that only 2% of out-of-school youth with intellectual disabilities in 2009 were enrolled in any kind of postsecondary education institution (National Longitudinal Transition Study – 2, 2009). These recent findings demonstrate that for the majority of students with intellectual disabilities in our country, college is still not considered a viable or realistic option.

Therefore, the markers of progress may be a bit misleading as they in some ways reflect the potential for a new reality more than our current reality. We cannot assume that the existence of some research, some online or print resources, and a relatively small number of programs means that our work here is done. The progress achieved thus far has allowed our field to begin a conversation that will likely need to last a very long time. And we should expect to hear conflicting opinions regarding what can and should be possible for students with intellectual disabilities in the context of postsecondary education. If, as Mohandas Gandhi observed, healthy discontent is the prelude to progress, then we are certainly in the prelude phase of this conversation. Perhaps as we celebrate these recent, and yes, important markers of progress we should also take a look back at the journey thus far to acknowledge and inform the long road ahead.

A Historical Perspective

This topic of conversation, postsecondary education for students with intellectual disabilities, brings with it important and complex questions about research, policy, and practice. Developing and implementing evidence-based practices, cultivating common standards with which to measure and research such practices, and generating supportive policies at the federal, state, and local levels will require significant amounts of time and resources. As we look to this next realm of adult life – higher education – with the intent to build upon what's been achieved and determine what might be possible for people with intellectual disabilities, we must bear in mind that as a field of study this is one that is in its infancy. History shows us that change takes time.

It is not that long ago that a student with an intellectual disability did not have access to a public education, let alone college. In fact, some states had laws that explicitly excluded children with certain types of disabilities, including students with "mental retardation," from attending public school. In the 1970s, parents in 26 states had to resort to litigation to assert their children's right to attend public schools (National Council on Disability, 2000). Large numbers of people with intellectual disabilities languished in state institutions where their basic needs were barely met. The thought of educational or rehabilitation services was not even considered, certainly not as we know these services today. The medical community often counseled parents to institutionalize their children so they could get the "care" they needed and be "kept safe."

With the passage of the Education For All Handicapped Children Act (PL 94-142) in 1975 (now known as the Individuals with Disabilities Education Act – IDEA), Congress finally cleared the way for children with disabilities to have the opportunity to learn and to succeed in public school. Initially, the law was about creating access to a free, appropriate public education as well as individualized planning and least restrictive learning environments. In the 35 years since 1975, our public education system has responded to new expectations for these students and developed teacher training programs, standards and quality indicators, and regulatory oversight mechanisms. Much of this work was funded by the U.S. Department of Education in the form of personnel preparation, model demonstration, and field-initiated research projects.

This view of history allows us to put the current status of postsecondary education access into perspective. It has been only two years since the passage of the Higher Education Opportunity Act amendments (PL 110-315), the law that supported access to higher education and federal aid for students with intellectual disabilities. Consider for a moment the status of public school access for students with disabilities two years after the passage of the Education for All Handicapped Children Act. What was the level and consistency of services, the existence of standards to guide best practice, and the research supporting evidence-based practices and outcomes for special education students that existed two years after this ground-breaking piece of legislation? The policies and practices of that time reflected the knowledge base and values of the time, and provided a foundation for future expansion and innovation. For example, the notions of least restrictive environment, community integration, and individualized planning have been present in disability, special education, and rehabilitation legislation for many years; yet the manner and extent to which these notions have been implemented in practice has evolved significantly over time. Self-contained special education classrooms, sheltered employment workshops, and group homes were at one time "state of the art" in their respective fields of education, employment, and community living. However, as our expectations evolved about what people with intellectual disabilities could achieve in terms of learning, working, and living with people without disabilities, so did our practices.

As IDEA evolved to reflect higher expectations for youth with disabilities transitioning out of high school, this new emphasis was reflected in the hundreds of projects funded by the Office of Special Education Programs (OSEP), U.S. Department of Education, focused on demonstrating and researching transition practices in the 1980s and 1990s (OSEP, 2010). A similar level of interest in postsecondary education for students with intellectual disabilities, and corresponding funding from federal agencies, will be required to expand the current foundation of practice and to guide future research and policy agendas.

Another pivotal piece of legislation that has had a major impact on the lives of people with intellectual disabilities has been the Americans with Disabilities Act (ADA). This year was the 20th anniversary of the ADA. Remarkable progress has been made: We now know what quality services are and that they must be designed to support people with intellectual disabilities in deciding what they want to do, when, and where. People with intellectual disabilities have the right to try, take risks, fail, and succeed. The rights of students with intellectual disabilities afforded under the ADA (Office for Civil Rights, 2010) must not only be protected but fully implemented so that the goals of the law – equality of opportunity, across all aspects of adult life, including higher education – are fully realized for each person with an intellectual disability.

Current Realities

As we embark on this next generation of work, the policies, research, and practices addressing postsecondary education access for students with intellectual disabilities must be developed using a framework that reflects and adheres to the legislative guidance provided in the Higher Education Opportunities Act while keeping in mind the existing parameters set forth by Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act. On a policy level we need to recognize that students with intellectual disabilities will not be supported to consider college as a realistic or viable option unless the legislative and regulatory language that guides our secondary special education practices more clearly supports this option. While there is some very brief (and difficult to locate) language in the preamble to IDEA that states that nothing in the law would prohibit a local education agency from using IDEA funds to support students with disabilities in a postsecondary environment, there is no clear support articulated for funds to be used in that manner. The current IDEA regulations also do not differentiate between the IEP guidelines and transition expectations for students between the ages of 18-21. Therefore, school systems may struggle with translating meaningful, socially integrated, transition experiences for young adults on a college campus into the same IEP framework used for elementary, middle, and secondary special education students receiving services in a high school.

The current research literature on postsecondary education for students with intellectual disabilities is comprised primarily of descriptive studies, qualitative studies, and some single subject and case studies on postsecondary experiences and outcomes for individuals with intellectual disabilities (Think College, 2010a). There is scant research on evidence-based practices or interventions for students with intellectual disabilities in postsecondary education. Why is this? One reason is that there was – and to large extent still is – little existing or consistent practice, let alone evidence-based existing practice. We must recognize that the currently operating programs and services in colleges for students with intellectual disabilities have been created without federal or state legislative or regulatory guidance or funding, and thus these practices can be difficult to compare in a meaningful way. Additionally, up until very recently, there have been extremely limited and somewhat disjointed efforts to fund any kind of research in this area.

Despite this, over 140 postsecondary education options for students with intellectual disabilities do exist (Think College, 2010b). The existence of these options demonstrates the power and potential of the early grassroots efforts of institutes of higher education, local education agencies, and families to offer people with intellectual disabilities access to college. These efforts have been revolutionary and in many cases these practices have been ground-breaking. Each of these past efforts should be honored, but also thoughtfully examined in light of the new federal guidelines.

What Comes Next

Ongoing and future work in this area should build upon the early efforts of the institutes of higher education, school systems, agencies and individuals that created opportunities where none existed. Emerging programs can benefit from their collective experience regarding what worked and what didn't in terms of planning, brokering partnerships, blending resources, and cultivating authentic learning experiences for students with intellectual disabilities. Part of the next generation of work will be conducted by the colleges and universities that have been recently awarded Transition and Postsecondary Education for Students with Intellectual Disabilities (TPSID) model demonstration grants by the Office of Postsecondary Education, U.S. Department of Education for the grantees list). These 27 projects across the country will provide the field with the opportunity to see how the Higher Education Opportunity Act regulations can be put into practice, and will determine the extent to which practices based upon those parameters create and support successful outcomes for students with intellectual disabilities.

These new model demonstration projects will deepen our understanding of the structures necessary to implement postsecondary education services, and provide some common measures of the experiences and outcomes of students. Yet, sole reliance on these projects to cultivate and refine our knowledge base around higher education and students with intellectual disabilities would be short-sighted. It will be imperative that, as other federal and state agencies or foundations prioritize funds, efforts are made to engage other two- and four-year colleges and universities, vocational and technical colleges, and local education and adult service agencies in a diverse array of research activities. These efforts will be made all the more fruitful as additional programs and services are developed and implemented across the country.

This final component of the next generation of work – the creation of new programs and services options for people with intellectual disabilities – will depend greatly upon leadership at the state and local level in state departments of education, higher education commissions, local school systems, and rehabilitation and disability services agencies. Collaborative efforts between these entities will build and strengthen state networks, and allow for the development of the systems-level infrastructure and communication mechanisms needed to foster and sustain new partnerships and services. Our state and local leaders must take the time to become aware of the resources and opportunities that exist in their states, identify gaps in services, and establish plans to respond to the growing need and desire of their constituents with intellectual disabilities to access higher education. 

Conclusion

The next decade will be a very exciting time as the range of options for postsecondary education for individuals with intellectual disabilities continues to grow nationwide. We are entering a new phase of the conversation when the questions on the table focus less on, "Should students with intellectual disabilities have the option to go to college?" and more on, "How can students with intellectual disabilities have the option to go to college?" and "What should these experiences be comprised of and culminate in?" These questions will drive the next wave of research, policy, and practice. As we seek to answer them, we will have the chance to apply the lessons we have learned about how higher expectations affect the achievements of and outcomes for people with intellectual disabilities in public education, employment, and community living to the relatively new arena of higher education. As our vision of what is possible for students with intellectual disabilities expands once more, we will be challenged to move beyond the comfort and relative ease of what we know, and to embrace the uncomfortable chaos that comes with not knowing.

Note: No official endorsement by the U.S. Department of Health and Human Services of any product, commodity, service or enterprise referred to in this article is intended or should be inferred. Opinions expressed herein are those of the author and do not necessarily reflect the position of the U.S. Department of Health and Human Services.

References

  • National Longitudinal Transition Study-2. (2009). NLTS-2 Wave 5 parent/youth survey data tables. Retrieved from http://www.nlts2.org/data_tables/index.html

  • Office for Civil Rights, U.S. Department of Education. (2010). Students with disabilities preparing for postsecondary education: Know your rights and responsibilities. Retrieved from http://www2.ed.gov/about/offices/list/ocr/transition.html

  • Office of Special Education Programs, U.S. Department of Education. (2010). Discretionary grants public database. Retrieved from http://publicddb.tadnet.org/default.asp

  • Think College. (2010a). Back to school on civil rights. Retrieved from http://www.thinkcollege.net/databases

  • Think College. (2010b). Literature database. Retrieved from http://www.thinkcollege.net/databases/literature

  • Think College. (2010c). Programs database. Retrieved from http://www.thinkcollege.net/databases