Improving Post Secondary Opportunities for Individuals with Down Syndrome

When Laura Lee graduated from high school in 2001, there were no college programs in her state for students with intellectual disabilities (ID). 

“Far too often, what is typically available for these students are ‘transition programs’ in high school that are isolated and a pipeline to living a life of poverty and either languishing at home or working in segregated sheltered workshops receiving below-minimum wage,” says Stephanie Smith Lee, Laura’s mother and Interim Policy Director for the National Down Syndrome Congress.

The Lee’s believed Laura and all students with Down syndrome deserved better. So, they petitioned George Mason University to start a pilot program and advocated nationally for more inclusive post-secondary programs. Laura became one of the first graduates of Mason LIFE Program, and today there are more than 260 college programs in 47 states for students with intellectual disabilities (ID). 

Laura Lee’s resume was impressive, even for someone without a disability. It included her graduation from George Mason University, her work at the World Bank, volunteering at a food bank, and becoming a nationally recognized self-advocate giving speeches nationwide.

In March 2016, Laura Lee passed away in her sleep. For thousands of people nationwide who mourned Laura’s passing, she had become a symbol of what can be accomplished when high expectations and advocacy meet. And Laura’s mother did not stop advocating upon her death. 

“She’s the inspiration for my continued work,” Stephanie Smith Lee says.

As Interim Policy Director for the National Down Syndrome Congress, Lee is now in support of a newly released U.S. House of Representatives bill that will improve upon the Higher Education Act. Lee was instrumental in helping push through improvements in 2008, when the law was reauthorized. At that time, legislation was included to allow students with ID to apply for financial aid for the very first time, as well as the funding of model post-secondary programs for students with ID.

The new House bill released last week would increase inclusive post-secondary opportunities for students with ID. “One big change that will create a more inclusive environment is that model post-secondary programs that receive federal funding to educate students with ID must now offer inclusive housing on campus,” Lee explains. The bill would also change language in the law to require model programs to focus not just on academics, but career development as well.

The House bill would be attached to the reauthorization of the Higher Education Act expected this year, and would include the following amendments: 

1. Using competitive grants to train faculty to deliver accessible instruction.
2. Establish an Office of Accessibility at every Institute of Higher Education.
3. A new grant program to implement Universal Design for Learning (UDL) .
4. A new commission to increase accessible materials and technologies.
5. Updates to data collection activities.
6. Updates to the program that funds Institutes of Higher Education that educates and integrates students with intellectual disabilities.

U.S. Representative, Mark DeSaulnier (D-California), who sponsors the bill says: “This first of its kind legislation takes a comprehensive approach to providing students and institutions with improved training, greater resources, and expanded services—bringing us one step closer to ensuring that all Americans have the opportunity to earn a degree, find a job, and achieve the American Dream.”

The National Down Syndrome Congress fully supports the improvements. “Students with intellectual disabililities want the opportunity to go to college like their siblings and friends, to learn, to experience independence, and become employed after graduation. Postsecondary opportunities for students with intellectual disabilities offer a new path to academic access, social inclusion, and working and living as independently as possible in the community,” says Lee.

The 2008 reauthorization of the Higher Education Act had very strong bipartisan support. So far, the current bill only has Democrats sponsoring the bill. Still, Lee hopes that there will be continued bipartisan support for further improvements for post secondary inclusion.

“I’m so exciting to see how far we’ve advanced since Laura and I started advocating so many years ago. So many more students have opportunities, and have gotten jobs and live in their communities. They have friends in the community and are contributing members of society. But we’re still not where we should be. The current bill will help pave a better path forward,” says Lee.