The dental community has undoubtedly become more sensitive to the needs of patients with intellectual and developmental disabilities (IDD). Yet sadly, dentistry continues to be the largest unmet healthcare need among these patients.
There are a few reasons why patients with IDD frequently do not receive the high-quality and specialized oral care that they require and deserve.
Too many times, we’ve heard from families that dentists want to extract most or all of a patient’s teeth. They are told that the patients can function on adjusted diets or have dentures fabricated if the patient is able to cooperate. Or, they say the patient likely won’t comply with hygiene, so why go through treatment.
Undoubtedly, there are some patients who do need multiple extractions. But many patients are able to maintain their dentition with the appropriate treatment and home care.
Many dentists were never offered adequate training or able to gain the proper skills to provide quality care to patients with IDD. Or, their offices cannot accommodate wheelchairs. Communication is difficult with patients who have autism or other types of IDD, and caregivers are often relied on for arranging appointments and consenting for treatment. And one of the biggest hurdles remains the inadequate reimbursement.
Overcoming all these challenges is quite possible! We need to start with a new mindset, because every person deserves quality oral healthcare without compromise.
Eastman Institute for Oral Health
When the famous entrepreneur and photography pioneer George Eastman (Eastman Kodak Co) watched his mother suffer with terrible tooth pain in the early 1900s, he understood how oral health affected general health. Also keenly aware that underserved populations faced barriers to care, he established a dental dispensary for children whose families couldn’t afford dental care.
More than 100 years and a few name changes later, our mission at Eastman Institute for Oral Health continues to center on helping underserved populations. In the 1970s, Eastman’s Dr. Jorge Davila was a pioneer in developing successful approaches to treating patients with IDD. His mind was set on solving the problem, not turning away from it. He found ways to address patients’ anxiety by introducing low lighting, music, aromatherapy, and touch therapy by rubbing lotion on a patient’s hands. We continue to use these approaches today quite successfully.
Eastman Institute providers have long been the safety net providers for underserved patients, including those with IDD. We serve families who travel several hours because they can’t find care elsewhere. And, as people with IDD and the general population age, many arrive in the dental chair with other medically complex conditions in addition to behavioral issues.
Our new Specialty Care clinic is designed to treat such patients in a more collaborative, multi-disciplinary environment than the traditional dental office.
Working with the patient’s physician, we help patients with a wide range of conditions. In addition to patients with IDD, we are successfully treating patients with cardiac health issues, diabetes, cancer, dementia, obesity, pregnancy, and many other complex conditions.
At Eastman Institute, part of the University of Rochester Medical Center (URMC), we have a three-tier approach that provides patients with a team of doctors to focus on the patient’s individual needs. Patients with child onset conditions such as cystic fibrosis, severe developmental disabilities, spina bifida, or patients on ventilators are seen at our dental clinic within URMC’s Complex Care Center. Patients who are hospitalized, medically fragile, or who require treatment in the operating room are seen at our facilities in the hospital.
Dentists, dental specialists, physicians, nurses, and others work closely together to provide the patient with optimal care, allowing us to use resources and expertise throughout URMC.
The multimillion-dollar Specialty Care clinic features large treatment rooms and a new elevator to accommodate stretchers and wheelchairs. We have airglide chairs, dual-entry spacious rooms, a Hoyer Lift, and a chairlift for wheelchair-bound patients. All allow better access for the provider and comfort for the patient. A new bariatric chair accommodating up to 800 pounds has allowed us to treat patients who were also unable to access care elsewhere.
Aside from the new equipment and facilities, it is our first priority to provide a positive experience for all our patients.
We are prepared to adapt to each patient’s individual needs and ability to cooperate for his or her procedure. Each patient is unique and has a different level of comfort with dental care.
We know that this is impacted by many factors. A patient who just spent two hours in a car may be agitated upon arrival, for example. Many of our patients’ families are surprised and very pleased that we speak directly to the patient, rather than the caregiver. The patient immediately feels respected and valued.
Caregivers, legal guardians, group home staff, and any support individuals who accompany patients are always welcome to stay with the patient. Not only are they helpful as we navigate the process, but they also serve as support to patients in what may be perceived as a stressful situation.
As we set goals for our patients, we acknowledge every small achievement during the visit and respect that each patient will have his or her own speed and level of willingness to adapt to the desired behavior for treatments. In most cases, the patient’s anxiety is sharply reduced after two or three visits because trust has been established. Visits then run more smoothly and enjoyably.
Many of our postdoctoral residents rotate through our clinics that serve patients with varying special needs. Training the next generation of general dentists and specialists will continue to reduce barriers to care. We teach residents to express empathy and help them gain confidence in treating patients with disparities and medical complexities.
Understanding patients’ needs is essential, along with having the patience and flexibility to adapt when the situation changes. With this approach, we can work together to permanently break down barriers to care.
Dr. Lipschitz, professor in clinical dentistry, is director of the Specialty Care clinic at UR Medicine’s Eastman Institute for Oral Health. He has more than 20 years of experience treating patients with IDD.