Duke Endowment continues work, dedication to serve people with special needs
People with special needs face an array of obstacles that can challenge their everyday lives. Project SANDs (Special Adult Network of Dentists) was developed so that finding the right dentist for individuals with special needs is not another one of those obstacles.
In 2015, Project SANDs was launched, with the goal to expand and improve access for all patients with special needs in South Carolina. Project SANDs provides patient navigator services across the state to assist in locating a dental provider. SANDs personnel partner with Family Connection SC to follow up and assure that appointments are kept and patients are satisfied.
In order to assist with locating providers, a web-based directory was created. This directory provides a comprehensive list of dentists and clinics across South Carolina that are prepared and willing to treat patients with mild, moderate or severe disabilities. It also includes information pertaining to what insurances are accepted and languages are spoken at these offices. Patients may be seen at the James B. Edwards College of Dental Medicine Special Needs Clinic, or they can be paired with a dentist in the community closer to the patient’s home.
The Duke Endowment awarded the James B. Edwards College of Dental Medicine $600,000 over three years to fund the innovative program. Elizabeth Pilcher, D.M.D, associate dean for faculty affairs, and Michelle Ziegler, D.D.S., director of advanced education in general dentistry and director of the Division of Special Care Dentistry are the co-principal investigators on the Duke Endowment grant.
Although Project SANDs is relatively new, the idea to provide easier access to people with disabilities is not. According to Lisa Summerlin, one of SANDs' program coordinators, the idea was yet another accolade that should be added to the accomplishments of Carlos Salinas, D.M.D. Dr. Salinas served as the director of the MUSC Craniofacial Anomalies and Cleft Palate team before his death in January 2015.
“I was blessed to work with Dr. Salinas many, many years ago,” she said. “He created a database for parents or caregivers, so they could more easily find dental providers in South Carolina.”
Ziegler credited Dr. Salinas’ vision for the creation of Project SANDs. “He developed a similar list many years ago, but it became stale, since it was difficult and costly to maintain. Technology and the Duke grant have allowed us to improve on his idea. He also designed this clinic,” she said, referring to the Clinic for Adolescents and Adults with Special Health Care Needs.
Project SANDs is an unusual program, due to its design. There is only one other web-based database like it in the nation. Combining the database with patient navigator services and follow-up care make it truly unique. Additionally, the patients who are seen in the College of Dental Medicine Special Needs clinic are treated by students and residents, providing experience in the care of patients with special needs for those future practitioners after graduation, when they enter private practice, adding to SANDs database of providers.
Diane Piccolo, mother of 22-year-old Nicholas, who has Rett syndrome, refers to herself as a walking billboard for Project SANDs. After her son was turned down for care time and time again, she is grateful for the wonderful connections and services that have helped him. Her family, she said, had not always had the most welcoming experiences when trying to find care for Nicholas.
Rett syndrome, a rare non-inherited genetic neurological disorder that occurs after birth, causes significant intellectual disability, developmental delays and impaired adaptive functioning, according to M. Frampton Gwynette, M.D. Gwynette, a child and adolescent psychiatrist, is the founder and director of MUSC’s Project Rex, a program for patients with autism spectrum disorder and their families. For those with Rett syndrome, nearly every aspect of their lives – from the ability to speak, walk, eat, and even breathe with ease – is affected, he said.
In Nicholas’ case, Rett syndrome was caused by a mutation in his MECP2 gene. Receiving dental care is a challenge for him, as he needs round-the-clock care for 100 percent of his daily needs. His mother found that not every dentist was comfortable treating him. Fortunately, she found there was a program that could help.
“When I lived in Connecticut, it was not easy trying to find a dentist that would work on a child with special needs. They’d tell us that they’re fully booked, and then we’d get turned away,” she explained. “I’ve been doing this for 22 years, I know they’re making excuses; they assume it’ll be a liability,” she said with frustration.
But when she was referred to Project SANDs by a colleague of her son’s primary care provider, everything changed. “Project SANDs found a dentist right away; they welcomed us with open arms.” And now, she can’t say enough good things about the program. She is concerned, however, for other patients with disabilities who are not so lucky.
Some private dental practices decline to take special needs patients, because of the complexities of their disabilities. Joan McLauren, a SANDs program coordinator, explained. “Most patients have more emergent issues that need to be dealt with prior to oral care. Dental care is often pushed down to the bottom of priorities, and then when they can finally address the dental issue, it is worse.”
Piccolo agreed. She had noticed the poor oral care at her son’s adult day care center. “I can clearly see the other adults with rotting teeth, because they cannot find anyone to help them. If the word is spread, this will change the lives of so many people who are desperately in need.”
The team members involved believe Project SANDs is a giant leap for dentists and patients in South Carolina, making an overwhelming process more convenient and safe.
Summerlin said that although the grant ends next year, the chance to see the program grow has been extraordinary. “I hope there’s a way to keep funding for the navigation services in the future and the web-based program can sustain itself. As far as Special Needs Clinic at the CODM, I hope that the students will continue to have the opportunity to treat and work with patients with special needs.”
Pilcher agreed. “The SANDs team has done a tremendous job. We have many success stories. Maintaining this website and adding to it by graduating dentists trained and comfortable treating patients with special health care needs will continue to make a difference for these individuals across our state.”