This blog is on topics of interest to early career professionals who work with people with disabilities. Blog contributors have diverse perspectives on leadership, professional development, and success in changing systems to better serve people with disabilities and their families. For more information on Early Career Professionals, check out the website:

10 September, 2015

Plain Language Summaries for Publications

Carli Friedman
UCEDD Trainee and former LEND Trainee
Doctoral Candidate, Disability Studies
University of Illinois at Chicago

Kate Caldwell
Former LEND and UCEDD Trainee
Postdoctoral Research Fellow, CEED Project
University of Illinois at Chicago

In many fields it is almost impossible not to use jargon. For example, The CEED Project is working to bridge the fields of disability studies and entrepreneurial studies to provide entrepreneurship education and training to service providers and people with disabilities. Accordingly, we often find ourselves having to use terms, phrases, and acronyms from both disability and business. However, this can make the work we are producing inaccessible to people with intellectual and developmental disabilities (I/DD). It also makes it hard for their family and caregivers to understand the results of our research, particularly if they have lower-literacy levels or use English as a second language. Accessible plain language summaries of publications provide individuals with something they can print out that is easy to understand, and which they can use in advocating and talking to policymakers.

The goal of this approach to knowledge translation is to break down complex concepts into the most essential form by using plain language and universal design so that the widest possible audience will be able to understand it -- including people with I/DD. Technical and academic language can be an access barrier for many people with and without disabilities. As such, it is important to use knowledge translation to bring research back to the community, especially to the very audience who are the subjects of the research.

To make plain language summaries one must first break down the key concepts and ideas presented in the publication. To do so, it can be helpful to make a rough outline of the publication that can then be written into short summaries. This process is discussed in more depth in our best practice recommendation. Here we discuss the use of plain language summaries not only as a disability access issue, but also as an open-access issue.

During this process it is important to continuously question if the concepts can be explained further and whether the language is truly accessible. Sometimes making a publication more accessible simply requires using synonyms for complex language, while other times concepts need to be explained in more depth. It’s important not to assume an abstract concept does not need to be explained because it is familiar or common. Similarly, it’s also important not to exclude an abstract concept because of an assumption that people with I/DD may have difficulty understanding it. Often this means it just needs to be presented in more accessible terms.  You can find examples of our plain language summaries on the CEED website.

About the CEED Project

The idea for making plain language summaries for published articles for The CEED Project came about when Kate began presenting at conferences on disability employment and entrepreneurship, citizenship, dyadic interviewing and inclusive research methodology. She would often talk with self-advocates with I/DD and their families who were interested in learning more about the topic, and they would always ask for more information on this research. In particular, they wanted something that they could take with them and use. However, it felt insufficient to hand them an academic article that had been written for a completely different audience. Moreover, since it was written for academic publication the jargon level was extremely high! She realized just how often the very people who were supposed to benefit from the research had inadvertently been excluded from understanding the results because of how it was written and the language used. There had to be some way to make these articles more accessible for people with disabilities and their families. Since then, the underlying idea has been to provide summaries in plain language for these articles, which indicate what the full-text contains. That way, if someone wants or needs more in-depth information they have the option of referring to the relevant area of the article or they can contact us.

Carli became involved in this effort because one of her main research interests is the empowerment of people with intellectual and developmental disabilities. She finds knowledge translation of particular importance to make sure people with I/DD have equal access, and believes knowledge translation is crucial to ensure research expands beyond the walls of academia. Carli started making accessible plain language factsheets for the Sexuality and Disability Consortium so that a wide variety of people could access hard to find research about sexuality and people with I/DD. In doing this, she finds it important to consult with self-advocacy specialist, Tia Nelis, as a form of member-checking to ensure documents are appropriately accessible. Since then she’s completed a number of different knowledge translation activities for a variety of projects including the Institute on Disability and Human Development (the Illinois UCEDD), Illinois LEND, the Sexuality and Disability Consortium, and The CEED Project

29 June, 2015

One Simple Goal

Julia Nelson, BS
 Former Arizona LEND trainee
 University of Arizona
I have one simple goal, to reach as many people as I possibly can with my message of proactive unemployment prevention for students with disabilities.

Being a LEND Trainee prepared me for and coincided with the self-publishing and  release of  The College and Career Success Bible for Those with Physical Disabilities.  During this last year, sometimes I felt the time strain of taking on LEND and Publishing at the same time.  But, if I had to do it over, I would have done it exactly the same. Being a part of AZLEND was one of the most amazing experiences of my life.  It provided me with tools and connections that so helped me push to reach completion.  My directors, Dr. Eileen McGrath and Dr. Sydney Rice, were amazing in the support they gave me during publication. I really cannot thank them enough.

Getting involved with both my LEND program and the AUCD network, really went hand and hand with the mission of my book.  My LEND graduation, was made extra special. Each of my fellow trainees, who I bonded with, got a copy of my finished book.  For me, it was a celebration of both milestones in my life coming to an end, and a new stage beginning.

 Having the privilege of being a LEND trainee this past year was invaluable in granting me this confidence.  I really urge the entire national LEND programs to follow Arizona’s suit and get more young professionals with disabilities involved as trainees.  

 Journey to Publication
My own experience with lack of guidance led me to write, The College and Career Success Bible for Those with Physical Disabilities.  Preparing to graduate high school I felt that if  you had expectations of getting at least a bachelors, working, buying your own home, so on, there was not a lot of advice for you.  Yet, despite of this, those with physical disabilities face unique issues that are not being addressed.  The main obstacle is still will we be able to find a job upon graduation?   Additionally, students with disabilities also have questions pertaining to attendant care, finding an accessible college, and how to obtain accommodations when they transition from IDEA to higher education and employment. Finding out about the Work Force Recruitment Program (WFRP) way after college, was a tipping point for me.  If only I had known, getting my first job out of college could have been easier.  While, self-publishing felt as if it took forever, the journey was definitely worth it.  

In a way, using the advice I would give any job seeker, but especially job seekers with disabilities. Network - research shows that networking is the number one way that people go from job seeker to employee.  Research also says, networking, is the number one way those with disabilities find jobs.   There is help out there for your job search. Seek and you shall find.  The number one piece of advice I would give to young professionals, is the same advice I’d give for anything that we face in life, never, ever, give up!   

Wherever this road leads, I know I will change lives by using my hard won insight to bring issues relating to higher education and employment to the forefront!  

The College and Career Success Bible for Those with Physical Disabilities is now available on Amazon.

03 March, 2015

Appreciating Those Who Lead You to Success

Zach Goble, EdS
Former University of Kentucky UCEDD trainee,  and former Cincinnati Children's Hospital Medical Center LEND trainee
School Psychologist, Scott County Schools

When I was asked to be the early career professional blogger for the month of March, I was immediately enthralled by the opportunity. For weeks, I brainstormed about what to write and thought about what would touch the biggest audience. Eventually, I ended up writing four different drafts (i.e., “Creating Your Own Path to Success,” “Taking Advantage of Every Opportunity,” “Making the Most of Your LEND/UCEDD Training”, “Life outside the AUCD Network”). Each time I wrote a new draft, the central message always seemed to be the same: the importance of a strong support system in your personal and professional lives. So without further ado…

Thank you to my first true mentor, Dr. Laurie Couch. As my undergraduate adviser/ professor/ department chair/research lab director/life coach, etc., Dr. Couch had no way of avoiding me. Luckily, she made no efforts to. Instead, she taught me to love psychology, about the value of research, how to find my professional niche, and most importantly, about not being afraid to step out and create my own path in life.

Thank you to my friend, Jeff. Jeff is a young adult two years my junior who has cerebral palsy and autism spectrum disorder. He is the first person who helped me realize that I wanted to work in the world of disabilities. He also helped me realize that whether or not the world likes it, you just have to be yourself. I can guarantee that I have learned more about life and friendship from Jeff than he could have ever possibly learned from me.

Thank you to my University of Kentucky/Human Development Institute-UCEDD/Cincinnati Children’s-LEND mentors who spent their time and energy to help mold me into the early career professional that I am today. In particular, I’d like to thank Dr. Rachel Hammond, Dr. Harold Kleinert, and Dr. Karen Edwards. It was your confidence in me that helped me know I could reach whatever professional goals I wanted to! With your guidance, I was able to land my first job as a school psychologist and use the wisdom you embarked on me to start making my mark in the community.

And lastly, to my wife and son, Jenn and Jude. Your love keeps me focused, driven, and joyful (insert tears here). You cannot be appreciated enough.

I am not publicly thanking these individuals just stay in their good graces (although I’m sure it will help). I can guarantee that without my personal and professional networks that I wouldn't be anywhere close to the position that I am in today. It is my hope that this highly personal blog will help each of you reflect and recognize some of the most influential individuals in your lives who have helped you get to where you are today. Take the time today to personally thank those people.

Now, it is our turn. It doesn't matter if you are a current trainee, early career professional, or nearing retirement, our training and association with the AUCD network gives us a special opportunity to make a difference in people’s lives. Whether it’s through mentoring, clinical work, public policy, or advocacy, we can directly impact people’s lives. Gandhi said “be the change you wish to see in the world.” I’m beginning to think this guy was on to something.