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The Low Down on Higher Education for People with IDD

Updated: May 7

PART OF OUR RESOURCE 2024 SERIES: Expanding your options and your community


Featuring guest blogger, parent, and advocate Dr. Chelsea VanHorn Stinnett.



AnnaRose Rubright with her Rowan University diploma.

Think College...and More

My name is Chelsea and I have several identities in the world of higher education for students with disabilities. The reason that brings me to you here today is that I coordinate technical assistance for Think College. What does this mean? Well, I help build awareness and assist in expanding postsecondary education (PSE) programs for college students with intellectual disability across two national centers: the National Coordinating Center and the Inclusive Higher Education Network. And I promise that much of what I’m going to say to you is relevant towards everything you want to know about these programs and how college is possible for students with Down syndrome. But first you should also know about the other hats that I wear and how they affect the type of advice and support I give to families and prospective students. 



Speaking from Experience

I used to run one of these programs. My doctorate degree, while it says special education, might as well have been in inclusive postsecondary education for students with intellectual disability. I spent almost eight years in a variety of roles- I was first a peer mentor, then an instructor, an employment coach and a coordinator. Then I coordinated the program and eventually became the executive director. I used to work in Housing as a resident assistant. I teach classes as a faculty member. I’ve worked for disability service offices and as a high school special education teacher. I have family members with disabilities. I am a person with disabilities. I am a parent. I keep each of these experiences in mind when talking to parents about the next step in their child’s educational journey. “What does this look like?,” “How is my child going to do this?,” “How can I support them when they no longer live in my home?”, and my favorite- “What happens when they make a mistake and I’m not there to figure it out for them?” Guess what- I have some experience in each of these scenarios and from so many different perspectives at this point in my personal and professional career. 



Inclusive College Programs

College for students with an intellectual disability is something that lit my world on fire when I first learned it existed- a place where young adults can have access to the same resources and experiences to improve their employment outcomes. Wow. A place where they can be exposed to new people, lifelong friendships, values, ideas, programs, lifestyles, and choices that aren’t necessarily available in their hometown? Amazing. For those of you who already know that these types of programs exist for college students with Down syndrome, great! I still think you’ll get some valuable information from some of the resources and information I’m sharing. For those who haven’t, I hope to figuratively light your world on fire in the same way. College is possible and making a difference in the lives of students with Down syndrome all across the country. 


In fact, this movement was sent into hyper-drive by the parent of a young adult with Down syndrome. While there is evidence that colleges and universities have been supporting people with intellectual disability for over 30 years, in the early 2000s, Stephanie Smith Lee, senior policy advisor of the National Down Syndrome Congress, but more importantly, mother to Laura Lee, recognized the lack of access and support for people with intellectual disability in college. Many folks did and still do ask- “Why would a person with Down syndrome want to go to college?” The answer is simple- for the same reasons everyone else wants to! To have better jobs, to explore ideas and concepts that are important to them, to live independently, and to make new friends and memories away from their parents. 


In recognizing her daughter’s and countless others’ desire to attend college, Stephanie and others championed the passage of the Higher Education Opportunity Act in 2008, which provided federal funding for model demonstration programs, a national coordinating center (that’s us, at Think College!), and access to federal financial aid, amongst several other components that have led to a dramatic increase in the number of programs in 2008 (close to 100), to the over 330 programs that are reported in Think College’s College Search program directory. 



The Tremendous Value of Post-Secondary Education

We know that PSE programs for students with intellectual disability are effective*. More than half (60%) of students who completed a PSE program were employed within one year of exit, compared to the national employment rate of 19% for people with intellectual disability (Grigal et al., 2022). Half (51%) earned higher wages than those who did not access postsecondary education (Smith et al., 2018), and 87% of students were enrolled in a credential program, while 42% of adults with intellectual disability who don’t attend college, attend a day program or sheltered workshop (National Core Indicators, 2022) and 29.3% live below the poverty line (Winsor et al., 2022). All programs provide peer mentor support to students (Grigal et al., 2022), and 44% of those who don’t attend college report they often or sometimes feel lonely (National Core Indicators, 2022). 



Details of PSE

These are traditionally non-degree programs, where students are working towards completing a credential and often, an industry aligned or recognized credential. Students take coursework relevant to their professional and personal development, sometimes with modifications to the objectives and assignments required in the course. About 46% of PSE programs are considered Comprehensive Transition to Postsecondary programs, or CTPs- a designation approved by the US Department of Education. This means that programs have met certain criteria in terms of inclusivity and rigor and allow for non-degree students to receive federal financial aid. Over a third (38%) of programs offer on-campus housing for students, which also varies from program to program in terms of the support offered to students. Some PSE programs allow students to live wherever they are eligible to live on campus, with no program-specific support in the dorms. At the other end of the spectrum are those PSE programs that offer peer mentors who live in the same suite as program participants- and several models of support in between. 



Social Support

Similarly, the ways in which students are supported socially may vary. For many, they have use of PSE program personnel and support as needed. Peer mentors and other program staff may work with students to develop and navigate social situations and goals “behind the scenes.” Others have peer mentors who will attend club meetings and athletic events with students. Free time is a new concept to many college students, given that their days in high school were very structured; spending 8am-3pm in scheduled classes. In college, you usually have large gaps of free time between classes, and some days when you don’t have class at all. Then there are the weekends- so many activities and things to do! But also, time to relax and be alone for a while, too. Programs vary in their approach to supporting students during their free time between classes, at night, and on the weekend. From my experience, I would say most programs do an excellent job of reminding students which events are which nights and supporting them leading up to the event by helping them to complete tasks like securing tickets, scheduling a rideshare, and inviting friends. And they may occasionally go to a new event or venue with a student or grab a meal with them, but their goal is to scale back their support and allow for the student to make new friends and rely upon natural support that already exists on campus. 



Identifying the Right Program

The right program for your student will be highly dependent upon their expectations related to their time in college, their level of support needs, and whether the program has experience in supporting students in their desired career pathway. At a minimum, programs offer general career awareness and exploration opportunities. Most should offer work-based learning opportunities like job shadowing and internships. However, the type of program I would want my student to attend would have success in seeking out individualized, community-based employment for students and offers support and pathways to industry-based credentials that lead to competitive employment. Asking program administrators about the level and type of support they provide is important across all domains of programming- employment, academics, independent living, social engagement, and personal development. 



More Information for You...

If you’re still wondering what this could actually look like, check out this video from our public awareness campaign, proudly featuring two students with Down syndrome who are thriving in PSE programs. If you’re still a little nervous, that’s understandable! That’s where we come in. We have an entire portion of our public awareness campaign website dedicated to resources for families. Given that these programs can differ significantly in terms of the type of support and opportunities offered to students, there are several questions you should be prepared to ask when investigating which program would be the best fit for your student. In fact, there is an opportunity to meet with several programs in person at the annual college fair at the National Down Syndrome Congress. Can’t make it? No problem! Consider joining our Think College Families Group on Facebook to learn more about the resources we have available at Think College, but mostly just to hear and learn from other families who are currently exploring, have enrolled in, and who have alumni of these PSE programs. If you still need assistance in learning more about college options for students with Down syndrome, that’s why my job exists. Email me at thinkcollegeTA@umb.edu and my technical assistance team and I would be happy to assist you. It is our goal that all students who see the value in going to college and want to work hard towards their desired futures, have the opportunity. If I haven’t lit a fire, I hope I’ve at least sparked the thought that college is something worth looking into with your child with Down syndrome.



*Data presented in this section are representative of federally funded, model demonstration programs funded by the US Department of Education Office of Postsecondary Education.

 


 

BIO: Dr. Chelsea VanHorn Stinnett

 

 

Dr. Chelsea VanHorn Stinnett coordinates technical assistance for Think College at the Institute for Community Inclusion at the University of Massachusetts, Boston. In addition to expanding the number and quality of postsecondary education programs for students with intellectual disability, she is an educator and researcher, specializing in building agency amongst college students with intellectual disability and preparing teachers to support their high school students to successfully transition to postsecondary education and/or employment. She lives and works in Dayton, Ohio. 




Want to Learn More?

  • Check out our diverse blogs split out by age ranges

  • Consider picking up The Essential Guide for Families with Down Syndrome to help fill in the blanks and provide you with the resources you'll need.

  • Utilize other website resources including an Independence Assessment Quiz, our 10x10 YouTube series, and a fabulous Resource Directory.

  • Got more questions? Join our FREE live virtual webinar in January or February. Find out more and register here!


 


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The Essential Guide provides step-by-step support to:

  • Inspire mindset shifts toward one of independence and possibilities

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  • Evaluate family- and community-based home options including the search process

The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.

“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas

Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.


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