On Friday, March 8, the University of North Carolina at Chapel Hill School of Social Work will host the third annual Legacy Speakers Series at the Friday Center in Chapel Hill from 9 a.m. to 4 p.m. This year the series is focusing on “Thriving with I/DD Across the Lifespan.”
Dr. Sheli Reynolds, key developer of the Charting the LifeCourse framework and tools and associate director at UMKC Institute for Human Development, will lead the day by sharing her expertise in practices that enhance person- and family-centered organizational, policy and systems change.
We spoke with Reynolds ahead of the event to discuss “Charting the LifeCourse.” The following has been edited for clarity and brevity.
You can register for the event here.
What is Charting the LifeCourse?
Charting the LifeCourse is a framework with guiding principles that help people plan, problem solve and explore at all stages. I can use it to do strategic planning, I can use it to work with a team or a project. It’s a framework that is really to think about people’s lives and put the person at the center of all of the problem solving and exploration.
What drew you to supporting the I/DD population?
I have a brother with a developmental disability who is younger than I am: he is 42. I ended up getting my master’s in occupational therapy and started working at our university’s (UMKC Institute for Human Development) center on excellence in developmental disabilities and I’ve been here for 25 years, focusing my work starting with development disabilities, but the framework expands beyond that. It’s a human-centric framework that is really inclusive of everybody.
What kind of impact has Charting the LifeCourse had on the larger population and how do you measure that impact?
Charting the LifeCourse in a way has become a movement, meaning that it’s a way for people to think and talk and have conversations that are easily understood, and it doesn’t use systems jargon. When we developed Charting the LifeCourse, it was really as key principles to drive a project. I like to think in terms of pictures and shapes, and so I used shapes to describe the key principles and then people asked for those shapes to become worksheets that people could fill out to really help dig in and think about topics that aren’t always as easily, concretely able to be discussed.
It’s interesting because I’m a researcher and there’s really not a strong research model around it, but the impact it has for people is that we have people all over the world asking if they can use this framework to guide their trainings, to guide their program development, to guide the work that they’re doing. To us, the impact has really been the demand and the excitement people get because I feel like it’s given them the passion for the work, why they’ve come into the fields that they’ve come into.
What is the connection between self-determination and a good life?
Speaking specifically about people with disabilities, really anybody who doesn’t have the opportunity to foster their self-determination is often hindered by attitudes or structural barriers or lack of services and support around them. As we foster an individual’s ability to know what they want, speak up for what they want and advocate for what they want and make it happen, they’re able to identify and work towards the good life. Without self-determination, it’s hard to know what your good life is and it’s hard to advocate for it to make it happen.
What do you consider the most critical points in each life stage and how do they fit together to promote thriving across the lifespan for people with I/DD?
We use life domains to think about our life stages. You think about early childhood, school age, adulthood, aging, and the domains cross those. There’s life experiences for each of those domains that are really crucial and for people with intellectual and developmental disabilities, oftentimes people only focus on the health and safety aspects of someone’s life. We very intentionally make sure that you are considering all the life domains. Oftentimes people don’t talk about the social and spiritual aspects of people’s lives. If I were to ask people what the vision for what their good life is, almost every single person would say people around them, their friends, their families. But it’s never discussed in the disability field. To me when I think about focusing on the people you love and who love you and who you want to be around and your relationships, as well as focusing on what is meaningful for you in terms of experiences, whether it’s employment or something meaningful during the day, how are we, starting in early childhood, helping people see that they have adult possibilities, even throughout their aging life stage. I think all life domains are important. I definitely think social and spirituality, I think advocacy and engagement is important.
Is there anything else you would like people to know about the work you’re doing?
The LifeCourse framework is not target specific, it really is human-centric. We have people using it whether they have a diagnosis or not, they’re using it for retirement or thinking about their own health care or thinking about how to buy a car. It’s a lens for thinking about all the things you would want in your life, thinking about the future while thinking through the past. But I also think the thing that is really important for people is oftentimes people with developmental disabilities are limited to the services that are available to them. The LifeCourse framework really pushes people to think about not only paid services, but relationship-based support, support from the community, their own skills, and strengths. It really also emphasizes technology. That’s really a game changer when we have more ways to problem solve how to support people to have the life that they want.
Questions curated by Director, UNC Cares Program Linda Kendall-Fields and Program Manager Laurel Powell.