Almost twenty years ago, my daughter, Laura, was in her senior year of high school and asked me where she would go to college. Laura, who was born with Down syndrome, wanted and expected to go to college like her older brother and high school friends. At the time, there were only a few college options for students with intellectual disability (ID). Luckily, George Mason University agreed to start the Mason LIFE program and Laura and two friends became the first three students. This inclusive opportunity changed Laura’s life and resulted in her working at the World Bank, living with support in a townhouse, and advocating effectively for others to have the same opportunities.
Shortly after Laura started at Mason, I became the Director of the Office of Special Education Programs in the U. S. Department of Education and had the opportunity to promote inclusive higher education using the bully pulpit and funding a database of programs and model development programs directed by Meg Grigal and Debra Hart, who now very ably direct Think College along with Cate Weir. After leaving the government I worked for a national organization along with inclusion pioneer Madeleine Will to promote inclusive higher education opportunities. A part of this effort was developing and working to implement a strategic plan with the goal of creating high-quality, affordable inclusive higher education options for students from all backgrounds across the country. The plan included obtaining federally funded research, technical assistance, model programs and outreach; developing state coalitions and publicly and privately funded postsecondary programs; and addressing affordability issues.
At first, programs began popping up independently around the country, driven by student and family advocacy. Progress was made with a research grant from the U.S. Department of Education and a large technical assistance grant from the U.S. Department of Health and Human Services. A major step forward was achieved when advocates, with help from Eunice Kennedy Shriver, convinced Congress to include provisions in the Higher Education Opportunity Act of 2008 that authorized certain federal financial aid, new model programs, and a National Coordinating Center (NCC), which was later awarded to Think College.
One of the requirements for the NCC was to convene a workgroup of experts to develop model program accreditation standards for inclusive higher education programs for students with ID. I had the honor of chairing the 2011-2015 Accreditation Workgroup that developed model accreditation standards for the first time. I also served as chair for the second workgroup (2016-2020) which conducted a field test of the model standards; held public input sessions; surveyed programs regarding their interest in becoming accredited, and conducted other outreach. As a result of these efforts, the model standards were significantly updated and included in the Accreditation Workgroup’s report to Congress and the Secretary of Education. The Report on Model Accreditation Standards for Higher Education Programs for Students with Intellectual Disability: Progress on the Path to Education, Employment, and Community Living also addresses new challenges that have emerged as the field of inclusive higher education has matured and makes recommendations to Congress and the U.S. Department of Education (ED).
The revised standards and accompanying guidance will make a real difference in improving the quality of, and accountability for, inclusive higher education programs. Institutions of higher education, program staff, parents, students, and employers will have an assurance that accredited programs meet a certain level of quality. Programs do not need to wait for accreditation to start--they can use the standards now for continuous quality improvement efforts. Parents and students may use the standards as quality benchmarks when considering applying for admission. If Congress and ED implement the workgroup recommendations, it will make a significant difference in the affordability and quality of inclusive higher education programs.
Much of that early strategic plan has been achieved and there are now over 300 postsecondary programs nationally serving over 6,500 students. While that is impressive progress, we still have a long way to go. The small role that Laura and I have played in this movement has been rewarding for us in many ways. While Laura passed away in 2016, I know she would be thrilled at the progress that has been made since that time twenty years ago when she asked where she would go to college, and thrilled for all the students since then who have had inclusive college opportunities. The model program standards will set the stage for even more students to have such opportunities and move us forward on the path to inclusive education, employment, and community living.
About the post author: Stephanie Smith Lee is the Senior Policy Advisor for the National Down Syndrome Congress and chaired the Accreditation Workgroup from 2011 to 2020. She is a national disability expert who has served in senior Congressional staff positions, as Director of the U.S Office of Special Education Programs, and Chair of the Inclusive Higher Education Committee that successfully advocated with Congress to include provisions for postsecondary students with intellectual disability in the Higher Education Act. Since her daughter Laura was born with Down syndrome in 1982, she has led many successful advocacy efforts at the local, state and national levels.