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Taylor Ryan types away at one of Newark’s favorite coffee shops, Saxbys. It’s quiet during the summer, only a few groups catching up socially. But in the back corner near those comfy leather chairs, a table is filled with papers, empty coffee cups, food wrappers, and nearly empty water bottles. Taylor and her friend are viciously typing away on their laptops, and they aren’t winding down anytime soon.
Service Learning Scholars
Taylor is a service-learning scholar working on the National Leadership Consortium on Developmental Disabilities (NLCDD) and conducting disability studies research with Professor Steve Eidelman and Professor Nancy Weiss here at the University of Delaware. Eidelman and Weiss operate NLCDD, a small nonprofit with the mission to train individuals working in the field of disabilities to become better, more progressive, person-centered leaders.
The NLCDD holds annual leadership institutes (weeklong conferences) nationally and internationally, with faculty leaders in the field presenting intensive leadership training. Institute participants work on personal development, hone leadership skills, practice professional reflection, and learn about trends in the disabilities field today. After the conference, participants return to their organizations with knowledge and leadership skills to make the lives of people living with disabilities better.
Taylor says the field of disabilities studies is dynamic and ever changing. Even if you took a class on disabilities five years ago, you’re out of date. The mission of the two professors, Taylor, and the NLCDD, is to education people working in the field with the correct, most progressive and up-to-date information. She said that many of the traditional techniques used to care for adults living with intellectual and developmental disabilities – methods like congregate (group) living environments – are not healthy and shouldn’t be sustained. Why?
You wake up, you have a morning routine, (maybe you brush your teeth before breakfast, maybe after), you use some mode of transportation to commute to school or work (or both), and you make active decisions about every component of your day. What you’ll wear in the morning, what time you’ll eat lunch, which activities and errands you’ll run, with whom you’ll eat dinner, and even what you’ll eat for dinner. This is your normal life. Now, imagine this autonomy—these easy decisions we take for granted—gone.
Adults living with intellectual and developmental disabilities who live in congregate environments make very few decisions for themselves. They may get to decide what shirt and pants to put on in the morning, but they surely do not decide when, where, and what their meals are or with whom they eat. These adults want to make the same everyday mundane decisions as everybody else. They want to learn, keep a job, have a social life, and decide whether or not they feel like cooking dinner or getting take-out. The fact of the matter is, we often do not allow this population the freedom to make decisions for themselves, and we take our decisions for granted.
Throughout the project, Taylor used Maslow’s Hierarchy of Needs to help audience members consider if Maslow’s needs were being met for those adults living with disabilities in congregate living environments.
Taylor told me about a recently developed method of providing living space for adults with intellectual and developmental disabilities. It’s called person-centered living. Adults living with intellectual disabilities have more opportunity to make decisions for themselves by living in an apartment alone or with a few other people (their choice), with minimal support from staff who would normally work at a congregate center.
If organizations made changes like this, it would mean moving people from congregate care to individual settings. What’s the catch? Many people who have been working in the field don’t think there is enough support for people outside of congregate settings. While the resources and support people working in a congregate setting do seem to be crowding the abilities of those living with disabilities, life completely without any support would be hard. What the progressives in disability studies are suggesting is not an abandonment of those living with disabilities, but granting more freedom from the start and then coming to support in certain areas later on.
Taylor traveled around the country and conducted interviews with individuals living in congregate homes. She asked them about their lives, what they were happy with and unhappy with, their behavioral patterns, and what their day-to-day life was really like. What she found was that they wanted their own house and apartment. They wanted independence.
Taylor said, “I had personally never thought about this before working with them, but living in a group home is like being treated like children,” the NLCDD is pushing for this group to be treated more like adults. “It’s a human rights issue, which is really cool.”
Many organizations working with people living with intellectual and developmental disabilities are not only home-focused, but job-focused as well. They want people to find the perfect job for them that brings them joy, just like everybody else.
There is a big misconception that people living with disabilities are happy working in sheltered workshops. These are places that send people to work for unfair wages in environments that are very far away from public interaction. “Really they just want to be like everyone else,” Taylor said. “It’s actually more cost effective to have them work in integrated settings as well. If they are paid the same and treated as a regular employee, everyone would benefit.”
If you think about your next trip to the grocery store, you might notice the bagger at the check-out could be an adult living with an intellectual or developmental disability. I asked Taylor specifically if this was a good or bad job for adults living with disabilities. She told me it all depends on how they acquired the job. If it’s through an organization that sends big groups of people to work at the grocery store and they didn’t actively seek out this job, then it’s bad. But if the person was hired under the circumstances that anyone else would be and they like doing their job, then it’s good.
While many big names are making headway in the field of disability studies, they aren’t the only ones researching for big change. Taylor’s summer research project (spread out all over the table at Saxbys) is to research how mental health issues affect the behavior of people living with disabilities.
Imagine that you lived in a congregate environment with people you did not know well, participated in the same available activities every day, worked a job that brought you no joy or opportunity to socialize and then you returned home to a meal and a bedtime that are decided for you. Would this lifestyle impact your mental health?
Taylor’s goal is to examine existing research and scales that measure mental health and have adults living with intellectual and developmental disabilities take the scales, kind of like a test. Based on the results, she is going to interview the test-takers and look for causes of certain emotions and how they react to those emotions. She explained, “For example, if someone’s original survey shows that they are anxious a lot, I might ask them what makes them anxious, and how they deal with anxiety, and if anything triggers their anxiety. My hope is to draw links between mental health, behaviors, and self-determination so these individuals will get more support and will be treated with more autonomy.”
Her research will make progress toward treating abnormal behaviors of adults living with intellectual and developmental disability. “Hopefully, I will be able to find trends in the data so that way service providers can use my research and look at the people they serve more holistically and understand the links between mental health, behaviors, and self-determination.”
According to Taylor, few states have counseling services on-site in congregate living environments, but a counselor could come to the center for a certain number of hours per week.
Working with the NLCDD for the past two summers has shown Taylor how meaningful research can be. The experience has guided her senior thesis and career aspirations.
Taylor said the best part of her research project is how much she has grown personally and academically. This project has changed her perspective on the disabilities field and made her consider how far we’ve come, and how much farther we have to go. She said, “I’m really passionate about making sure people with disabilities have the autonomy and choices for their lives—where they live, who they hang out with, what they eat.”
The NLCDD has made a huge impact in the disabilities field in that it changed the way people have thought about people living with disabilities. Taylor has loved being a part of this.
How much of a human right’s issue it is to ensure people with disparities have autonomy? A lot. I asked Taylor what she wanted everyone reading this to know:
“People living with disabilities are like everyone else. If they are an adult, they shouldn’t be treated as if they are a child. I think the biggest thing is being respectful, and treating them like anyone else their age.”
While you may not think you know someone living with intellectual or developmental disabilities, consider that people on the autism spectrum are living with intellectual and developmental disability. As our society makes progress in welcoming and inclusive language and design, we must consider that the populations we are attempting to include are individual people. If you think you deserve basic human rights, including the freedom to make daily decisions for yourself, then why should rights be withheld from people who are different from us in some way?
Like what you read? For more information regarding the NLCDD, visit: http://www.nlcdd.org. If you’d like to get involved with NLCDD contact Steve Eidelman, or contact Susan Serra for more information about Service Learning Scholars.
By Valerie Lane