Published on Thursday, October 12, 2017
Media Contact: Alana Bowman
The Centers for Disease Control and Prevention estimates that one in six children ages 3-17 is diagnosed as having one or more intellectual or developmental disabilities.
These individuals are living longer and facing the same age-related health issues as the overall population, but they often don’t have access to existing health outreach programs, contributing to the great health disparities that the intellectual disability population faces.
Ryan Fulford, a student in the B.S.N. to Ph.D. program administered jointly by the University of Mississippi Schools of Nursing and Graduate Studies in the Health Sciences, wants to erase those disparities for the 6.5 million Americans who have intellectual disabilities.
Fulford is working with Special Olympics International and the Public Health Accreditation Board to introduce the concept of inclusive health to more than 2,000 state, local, tribal and territorial health departments in the U.S.
In addition to being a full-time student at the School of Nursing, Fulford also works as a nursing instructor at Louisiana Tech University in Ruston and part-time as a nurse in the emergency department of St. Francis Medical Center in Monroe.
Fulford knew he would continue his nursing education from the moment he became a registered nurse.
“I absolutely love the nursing profession. I have had a strong desire to move our profession forward as a whole,” Fulford said. He did not feel he was doing enough providing care at the bedside.
“I provide a standard of care, but that only impacts the patients that I touch, four at a time in the ED,” he said. “I struggled with the idea of how to play a greater role in the profession just as a clinician.”
He said he saw enrolling in the Ph.D. program at UMMC as an avenue to an “unlimited number of ways that I could impact our profession and help move it forward.”
Fulford’s start in graduate studies proved to be rocky. Within a few weeks of his starting the program, he began to face health issues. At one point, doctors thought he might have lymphoma.
“It was a tremendous bump in the road to be 24 years old, have a 6-month-old child and potentially face a diagnosis of lymphoma about three weeks after starting a Ph.D. program,” Fulford said.
After taking a semester of medical leave to recover, Fulford resumed his studies in the spring of 2015. It was in his online classes with Dr. Kaye Bender, president and CEO of the PHAB in Alexandria, Virginia, that he was introduced to the idea of population health. Formerly the dean of nursing, Bender remains a professor of nursing and teaches online graduate courses in public health science and theory. One of the courses includes a practicum at PHAB and a paper or project on population health.
“While Ryan was doing his practicum with me, our organization began a conversation with Special Olympics International about a concept called inclusive health,” Bender said.
Special Olympics International has a $22.5 million CDC grant to promote the concept that encourages the inclusion of the intellectually disabled population when organizations plan health promotion activities aimed at encouraging physical activity, reducing obesity and making healthier food choices.
Mary Pittaway, global clinical advisor of health promotion for SOI, said that the goal of the organization’s partnership with organizations like PHAB is to ensure that people with intellectual disabilities have the same opportunities to be healthy as others.
“For this to happen, we need to assure that inclusion of people with ID becomes normalized in mainstream health systems, included in policies, programming, services, training programs, health insurance and funding streams,” Pittaway said.
Bender and Fulford were invited by SOI to attend an invitational summit discussing inclusive health. There they had the opportunity to talk with intellectual disability “self-advocates” and with Timothy P. Shriver, chair of the international board of directors and son of founder Eunice Kennedy Shriver.
“A large portion of the program was actually hearing from people who have an array of intellectual disabilities,” Fulford said. “It was very rich, and it was very powerful.”
The message the self-advocates conveyed can be summed up by the credo of the summit: Not About Us Without Us. People in the ID population are able to take personal responsibility for their own wellness, Bender said, if health promotion efforts are geared to include them.
Working with Bender, Fulford began to review literature from public health organizations around the country. Fulford said he found little to no language addressing accessibility for the ID population. He decided to take on the project of developing guidance for public health agencies to include this population when planning programs to promote wellness.
Fulford said that it makes sense to incorporate the guidelines into the accreditation process for public health agencies so inclusive health becomes a requirement rather than an option.
“The national office of the Special Olympics is reviewing what he put together,” Bender said. “As soon as we get their comments back, we will be using those guidelines to influence health departments all across the country.” She said that a description and article about Fulford’s project, “The Importance of Inclusive Health Promotion in Health Department Accreditation,” will be published in the Journal of Public Health Management in spring 2018.
Fulford will likely be focusing his doctoral research on the topic.
“As I started working with Dr. Bender and started really getting immersed within the literature related to this population, I began to consider that this could be a good research path for me, because it is in an area that I feel like I could be the advocate,” he said. “As nurses we are held to be advocates for our patients.”
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