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September 24, 2024
Thanos Zavras, DDS, MS, DMSc, knows that dentistry is not a one-size-fits-all treatment, especially for people with disabilities.
“While the art and science of dentistry has made significant progress, along with major technological breakthroughs such as digital imaging, digital dentistry, and so much more,” he says, “access to dental care for people with intellectual and developmental disabilities (IDD) remains problematic.”
Zavras is a coauthor of a new article, “Oral Health Care for Individuals with Intellectual and Developmental Disabilities: A Statewide Model,” which explores a model that improves access to oral health care for individuals with IDD in Massachusetts. The article, also coauthored by John Morgan, DDS, MS, professor emeritus in Public Health and Community Service at Tufts University School of Dental Medicine (TUSDM), appears in Special Care in Dentistry. It is the only journal published in North America devoted to improving oral health in people with special needs.
“We are trying to address a very serious problem,” Zavras says. “It’s a problem that sometimes remains hidden from society, so it’s an enormous challenge.”
Zavras is the endowed Delta Dental of Massachusetts professor at TUSDM, chair of public health and community service, and assistant dean for faculty advancement with oversight of the Tufts Dental Facilities (TDF) program. TDF, a partnership between TUSDM and the Commonwealth of Massachusetts, provides comprehensive dental care for adults and children with developmental disabilities living in the state. It is a network of seven dental clinics that are specifically designed to meet the oral health needs of individuals with IDD. The program, which began in 1976, also provides training in special care dentistry for dental residents and predoctoral dental students.
A grant from CareQuest Institute helped TDF evolve the model of oral health care for adults with medical complexity and/or IDD by developing a patient- and family-centered approach to care and by testing an interprofessional team and the use of teledentistry.
“For the first time, we had the ability to hire the coordinating team, a hygienist, and a social worker,” Zavras says. “And for the first time, we started having teledentistry sessions at home with caregivers and patients. This important demonstration project would not have been possible without the help of CareQuest Institute.”
Below, Zavras explains more about the challenges patients with IDD face when trying to get oral health care — and how the evolving model helps break down those barriers.
What are the barriers to care for people who have an IDD?
There are individual barriers, family barriers, financial barriers, and health care system barriers. At the individual level, it really depends on the degree of functionality. There are people with intellectual disabilities who are high functioning. They live in group homes. They work. And so they have needs that are different than others with profound disability.
At the level of the family, it is usually a dedicated member of the family who cares for a loved one, often full time. Such level of care inhibits employability, resulting in a significant financial burden. And that affects so many areas of someone’s life, including access to dental care.
On the health care side, one of the barriers has to do with the workforce. Statistics show that not a lot of dentists see people with disabilities. When discussing with colleagues trying to get to the root of the problem, we realize that dentists do not feel comfortable or confident. They also may not have the team with appropriate training and expertise to manage varying behaviors. The easiest solution is just to say, “No, I cannot. I’ll refer you somewhere else.”
Can you tell us more about the changes you were able to test with the CareQuest Institute grant?
We learned that listening to and trusting the parents and caregivers is critical. A family-based model considers parents as partners. Parental and caregiver input was requested at each decision point, and their feedback was evaluated and taken into consideration. This dynamic group, we learned, is engaged, cares deeply for the well-being and quality of life of their loved ones, and is not shy to share their opinions and recommendations.
Equally important was the realization that providing dental care to people with IDD is often intimidating to dental teams, who feel they are not adequately trained or prepared to provide high-quality care. The natural response of humans is to avoid what makes us uncomfortable. By creating a specialized team of colleagues who are trained together and work together — we call this team the Advanced Response for Complex Treatment and Integrated Care (ARCTIC) at Tufts — we hope to offer support for general dentists who wish to treat people with disabilities. In the future, we envision those dentists calling this specialized team to obtain advice. Those dentists can call this specialized team we have and say, “Let me talk about this case. Let me share what I see in the mouth, and let me know what you think.” Realizing this limitation and addressing it appropriately may lead to a higher number of dentists who are confident and comfortable with their approach.
How does this evolved model help expand access to more people with IDD who need a different level of care?
Expanding access to more people with IDD is an ongoing concern. For example, one of the lessons we learned by engaging parents and caregivers is that there is a specific group of people who we do not usually see at TDF: individuals with profound autism who have not seen a dentist for more than 10 years due to fear and inability to cope with the dental environment. This group requires a different approach, one that minimizes unwanted stimuli. They need the care to be brought to their home because their home is their sanctuary.
Having a dental hygienist and a social worker visit the house offers so many advantages. It allows the health care team to interact with the parent, to observe how the patient interacts with family members, and to study the living environment. Assessing the condition of the caregiver and the support that might be needed (psychological, emotional, financial, etc.) is one of the tasks of the social worker along with making appropriate referrals and identifying supporting programs. It also creates a psychological bridge for subsequent teledentistry visits.
How can this new article help people with IDD get access to oral health care?
This publication aims to help dentists, organizations, and ultimately patients by providing a sustainable set of instructions for creating a system of care that can address long and persistent problems and access barriers. By publishing the mechanics of this university/state partnership, we hope that more states will consider building similar infrastructures.
Sharing the TDF experience offers the perspective of a unique long-term model of comprehensive statewide oral health services designed to improve the oral health quality of life for individuals with IDD.
What’s next for you and TDF?
The next phase of the project calls for further improvements in TDF operations, including the application of artificial intelligence, along with broad dissemination of the findings and a further expansion of this demonstration project to additional families. Our patients deserve it. Stay tuned!