The Special Olympics gold medalist traveled to Louisville last week from his native St. Kitts in the Caribbean to receive pro bono clinical care from and a sports prosthesis from that would retail for about $61,000.

While training for the 2015 Special Olympics World Summer Games in Los Angeles, Foster was diagnosed with osteosarcoma, a type of bone cancer, which required his left leg to be amputated above the knee.

“It was devastating because tennis is my world. It almost felt like it was the end of life,” Foster said. “But, I became determined to not give up. I’ve been living life to the fullest ever since and trying to be strong for me and my mom.”

Foster, 24, not only lost his leg, but the cancer had spread to his lungs, requiring surgery and chemotherapy, which he received in New York because adequate treatment was not available in the Caribbean.

He continued to play tennis, albeit with great difficulty, on one leg. Special Olympics officials started raising money to get Foster a prosthetic leg and news of the effort reached Matt Holder, MD, MBA, chief executive officer of the in Louisville, who also serves as the global medical adviser for Special Olympics.

Seeking help, Holder contacted Priya Chandan, MD, MPH, assistant professor in the Division of Physical Medicine & Rehabilitation in UofL’s Department of Neurological Surgery and a Special Olympics Kentucky board member. Through the UofL connection, Matthew Adamkin, MD, UofL Physicians-Physical Medicine & Rehabilitation, was tapped to provide care at no cost to Foster. Adamkin prescribed the prosthetic and worked closely with licensed prosthetist and pedorthotist Wayne Luckett of Louisville Prosthetics to ensure it would meet Foster’s needs. Luckett obtained specialized components for the prosthetic through donations from Freedom Innovations, Martin-Martin Bionics, Endolite North America and American Prosthetics.

Foster must learn to trust his prosthetic, placing more weight on it in order to improve his movement.

“It’s hard work to wear a prosthetic,” Luckett said. “It requires 100-percent more energy to move compared to able-bodied people. He’s already an athlete and in good shape, but we’re going to get him in better shape so he can return to the tennis courts and be competitive again.”

Also during his time in Louisville, Foster underwent a CT scan of his chest with support from the Mary Jane Gift Quality of Life Fund through the . The fund was established by Tommy and Alex Gift to honor their mother after she lost her life to cancer.

Foster received good news; his CT scan showed no evidence of cancer. Megan Nelson, MD, UofL-Physicians-Physical Medicine & Rehabilitation, who specializes in cancer rehabilitation, helped organize the CT scan and arranged for Foster to meet with a sarcoma support group.

After a couple days of physical therapy, Foster trained on the tennis court with Rex Ecarma, UofL men’s tennis head coach, and Jeff Bourns, an amputee and Adapted Touring tennis player who holds a Top 5 World Rank (Category A) on the TAP World Tour.

The effort by multiple organizations to improve Foster’s mobility and help him return to competitive tennis was extraordinary, Adamkin said.

“I’ve never been a part of anything like this,” Adamkin said. “Dionte’s strides have been remarkable. With every day, he will get more confident and secure with the prosthesis.”
Foster said he is determined to make his story an example that inspires others to overcome adversity.

“It’s a game changer,” Foster said of receiving his new leg. “This has been an honor and I’m really thankful. It’s amazing to know I have a leg to go back home with and put my crutches aside.”

Priya Chandan, MD, MPH, assistant professor in the UofL School of Medicine and in the School of Public Health and Information Sciences, is leading nationwide efforts to help future physicians become more knowledgeable about caring for patients with IDD throughout their lives. Chandan, who has an older brother with Down syndrome, has a personal understanding of the need for physicians who can provide equitable care for people with IDD.

“This patient population is not just a pediatric population. All physicians need to be comfortable serving patients with IDD,” Chandan said.

To achieve that goal, Chandan is leading the National Curriculum Initiative in Developmental Medicine, a partnership between  and the , to ensure future physicians receive training to care for individuals with IDD across their lifespan. Throughout four years, 12 medical school partners will design and implement their own curriculum enhancements. UofL is part of the first cohort for this training, along with Baylor College of Medicine and the University of Colorado. The second cohort includes Ohio State, Case Western Reserve and Georgetown Universities.

Chandan also is working with Amy Holthouser, MD, senior associate dean of medical education, to develop the educational programs at UofL. One program is an elective rotation for fourth-year students at , an interdisciplinary clinic that focuses on caring for people with IDD that is funded by the Commonwealth of Kentucky. Through working with the patients and staff at Lee Specialty Clinic, the students will become more comfortable treating these patients.

‘Communication is a big part of it’

In addition, second-year medical students at UofL are participating in small group discussions led by  athletes in the Athlete Leadership Program. The goal of these discussions is to help the students better understand the needs of IDD patients by hearing their story and having the athletes express their needs.

Morgan Turner, a SOKY Athlete Ambassador who has met with the second-year students, said the most important message he wants to convey to the students is to include him in communication.

“When working with someone with a disability, be patient and ask questions to the patient and the parent. Don’t just talk to the parent,” Turner said.

“Communication is a big part of it,” Chandan said. “While this is a medical education project, we also see this as a way for people with intellectual and developmental disabilities to be self-advocates. Having them speak directly to medical providers about what it is like to be a patient and what they need from us is powerful.”

Chandan recently received two additional grants to expand her work. The first, an SOI Inclusive Health Innovation Grant, aims to improve education for resident and attending physicians regarding care for people with IDD. Chandan will work with the , leading efforts to educate resident and attending physicians regarding physiatrists’ role in the care of patients with IDD. Darryl Kaelin, MD, chief, professor and residency director of the UofL Division of Physical Medicine and Rehabilitation and president of AAPM&R, also is working on the project.

The second grant is from the to collaborate with the University of Kentucky’s Human Development Institute to develop a tool to aid with informed consent discussions. The tool will have the look of a graphic novel and will help facilitate conversations between health care providers, patients with IDD and supporters.

“I went to medical school with the intention of being a physician who serves patients with IDD,” Chandan said. “Along the way, I realized that we have work to do in terms of health education and health care delivery. My goal with these efforts is to improve care for these patients.”

To improve access to quality health care for adults with IDD, thn Nov. 12 at UofL. The conference will inform physical, occupational and speech therapists, physicians, dentists, social workers, patients and their caregivers about best current practices and future treatment directions for adults with IDD and address the multidisciplinary approach needed for their care.

“These are individuals with neurologically-based conditions who require interdisciplinary care from a variety of health care providers, including primary care, dentistry, cardiology, pulmonary, neurology, psychiatry and psychology, as well as physical therapy, speech therapy and occupational therapy,” said Michael Sowell, MD, professor in the Department of Neurology at UofL and co-director of the conference.

One such individual is Steven Haburne, described by his mother as, “a 41-year-old man with a pleasant personality who was born with spastic quadriplegic cerebral palsy and developmental disability.” He moves in a wheelchair, is non-verbal and has a seizure disorder. Haburne’s mother, Shirley Haburne, said they have met with physicians over the years who did not speak to Steven directly or who made assumptions about his condition without listening to Shirley’s description of his individual needs. When Haburne was very young, his family’s dentist told Shirley he was not comfortable treating Steven.

“It did hurt my feelings, but I understand. He is not the same as other patients,” Shirley said. “It has taken a lifetime of finding doctors. It takes time to find a doctor who will listen to you and trust what you say.”

Steven now receives dental care at in Louisville, which offers medical, dental, psychiatric and general health care services for patients with IDD, and he receives medical care from several specialists at . Shirley hopes the conference will help make optimal health care available for her son and others with IDD.

The conference will cover autism outreach, mobility and assistive technology, cognitive decline, advocacy for adults with IDD, and understanding the barriers in transitioning a child with neurodevelopmental disabilities into the adult provider network. Afternoon breakout sessions include topics in medicine, dentistry, developmental psychiatry and psychology, therapeutics and social work and are designed to stimulate discussions among health care providers, patients and their families that will lead to an improved standard of care in the region.

The event also is designed to support the physician specialty of adult developmental medicine.

“Developmental medicine as an emerging specialty pulls together a formal curriculum and training pathway to prepare physicians to provide the comprehensive care that these individuals need,” Sowell said.

Learn more about this specialty at the .

Conference details

The Second Annual Caring for Adults with Intellectual and Developmental Disabilities Conference is scheduled for Nov. 12, from 8 a.m. to 3 p.m. at the UofL School of Medicine, Instructional Building B – Room 115, 500 S. Preston St., Louisville, Ky. Continuing education credit is available. or by calling 502-852-5329.

Remote attendance

This conference also is available via a live interactive video conference for all persons interested in caring for adult individuals with a diagnosis of an intellectual or a developmental disability. to reserve your spot for the meeting.