Feature Issue on Inclusive Higher Education for People with Intellectual, Developmental, and Other Disabilities

“Really? How do you think that’s going to work out?”

That was the comment that started my journey from being a parent advocate, to a nonprofit founder, to becoming the director of the OK IPSE Alliance, the state alliance for inclusive postsecondary education in Oklahoma.

It was 2012, and our son was in 8th grade. I was sitting in the best networking format there was for parents of children with intellectual or developmental disabilities (IDD) – the waiting room of a therapy clinic. My friend had just asked me if our son (and his parents) had any thoughts on what next steps were after high school, to which I immediately replied, “college.” My husband and I loved our college experience and were reaping the benefits of a good education. Our son had grown up visiting our alma mater and assumed that college came after high school, not to mention he was interested in the things that a college education and campus life could provide.

My friend scribbled the name of a program at a university in another state that she had heard of and said I may want to check it out.

What we did not know at the time was that our assumption – that our son would graduate high school and go to college, get similar supports that helped him be successful in high school, and be prepared to launch into an employment field he was interested in - was naïve. We were in Oklahoma in 2012 and there were no inclusive postsecondary education programs in our state that would provide the format for an education in both topics of interest and life skills that a college bound student with IDD needed.

I discovered the name of a contact for the program my friend had given me – Donald Bailey – and called him. Through that conversation, I had multiple contact names and programs to visit that started me on my path.

First steps included visiting programs in other states and speaking with program directors, as well as an introduction to Meg Grigal with Think College. Talks with Donald about the pros and cons of starting a non-profit and partnering with universities, and discussions with Meg about learning the main points of a quality inclusive program, occurred too many times to count in the ensuing years. I read everything I could get my hands on and talked to every person Donald and Meg suggested. One of those was Edie Cusack, a program director at College of Charleston, who demonstrated excellent program leadership as well as being an open resource for materials and council. Those conversations gave me a passion for the type of program needed in my home state. I also began discussions with numerous individuals connected to transition in Oklahoma to see what was known about quality inclusive postsecondary education programs.

My research illustrated:

1. Quality programs improved the outcomes for students.
2. I had found very few individuals in my state that understood quality inclusive postsecondary education programs.
3. A university in our state would need startup funding.
4. We needed to find the right university partner.

A mission was born!

“How Long?” 2 years

That was the timeframe I gave my husband as we discussed how this new mission would work into our lives, reducing my hours at home and at my day job. We agreed on a two-year investment (I’ll come back to that) and a great deal of prayer based on the amount of work that needed to be done. This illustrates the phrase, “You don’t know what you don’t know!”

Education was critical. To inform and educate, you need supporting documentation, which I had from my research phase. I developed presentations for multiple audiences and created leave-behind information. My daily work was speaking to everyone that would answer the phone or open a door to listen. We also had a simple website built. Word started to get around and a director from a resource agency – Sooner SUCCESS - stepped forward and offered to help. Her involvement opened doors with a legislative contact, and for a fleeting moment we thought our grassroots effort could find funding from our state legislature. Funding did not materialize, however, and that door closed.

Others soon opened, confirming my belief that you learn something through every situation. We learned we needed to become a non-profit to gain credibility and receive donor funding. And we gained a connection with a vice-chancellor of the Oklahoma State Regents for Higher Education that would prove pivotal to our effort.

LeadLearnLive became a non-profit in 2016, after four years functioning as a grassroots organization. As we worked on our non-profit credential, we worked with our legislative contact and Think College consultants to draft Oklahoma HR 1065, enrolled in 2016. This resolution recognized the importance of inclusive postsecondary education and urged key collaborators to work together to begin programs.

Funding started to take shape through local foundations and connections with amazing, influential people with personal ties to those with IDD. Within two years, we had raised enough startup funding to be able to partner with a university.

A crucial contact came from our connection with the vice-chancellor from the legislative experience mentioned previously, a dean who later became the provost at Northeastern State University. NSU eventually partnered with LeadLearnLive to become the site for the first program in Oklahoma, and the RiverHawks Scholar Program began in 2018. Connections matter!

More lessons

Before NSU, we had progressed almost to the level of a memorandum of understanding partnership with one university, and then had a full reversal happen due to miscommunication at the executive level. That taught us several lessons about the need for clear communication and written follow up. We also learned just how long it can take to make these programs happen. Remember that two-year commitment? It took six years to get the first program going. Finally, we learned to trust in our partners. Two weeks before we signed the MoU with NSU, we were told the agreement would never happen because of budget cuts. Thankfully, NSU leadership kept moving forward. Remember what I said earlier about prayer?

It is truly amazing all that has come about since 2012. It has taken hundreds of intelligent and dedicated professionals, advocates, funders, and supporters to be where we are today, along with a small, dedicated volunteer board of directors with diverse expertise. LeadLearnLive has partnered with a second university as the primary funder for an additional program, and two universities have quality, inclusive programs running independently. My experience with this effort also moved me from my decades-long career in another field to my position as director of the Oklahoma Inclusive Post-Secondary Education Alliance (OK IPSE Alliance). I know the future is very bright for the students that are the reason for this work, but I also know that next steps in our state to further collaboration and gain tangible support for this effort is going to take time.

That’s ok. My husband doesn’t ask about timeframes anymore!

Related content

Opportunity Orange – Oklahoma State University | This video explains the history and other details about the Oklahoma State University postsecondary program for students with intellectual and developmental disabilities.