It is an unacceptable truth - people with intellectual and developmental disabilities (IDD) have a much harder time than people without IDD navigating the already complex health care system. That includes trying to find a dentist and access oral health care resources.

The reality is that someone with a physical disability or with certain developmental disabilities (e.g. functional Downs Syndrome) should not have a difficult time finding a dentist capable of providing them with the care they need. Many IDD patients can sit in a chair, keep their mouths open for the duration of their treatment and follow basic instructions similar to a person without IDD. And yet, many families still struggle to find a provider.

Now, consider someone with more profound disabilities, which may involve acting out, inability to keep the mouth open, biting, thrashing, gagging, or vomiting. People without a personal connection to the IDD community more often associate individuals with the phrase “special needs.” But a person's level of disability matters; barriers and obstacles increase as the level of disability increases.

Addressing health access requires this deeper understanding of people with IDD, which comes through greater interaction with the community and better training. And yet, 81% of physicians graduate from medical school without ever caring for a person with IDD. That’s true for 50% of dentists. In fact, one study shows more than 50% of medical and dental school deans say their graduates are not competent to treat patients with IDD.

If a person with a disability - regardless of level - calls for an appointment and identifies as “special needs,” that language frequently sends up a red flag and the caller is turned away. Providers – like many other people – often don’t distinguish between types of disabilities and make assumptions about their ability to provide appropriate care to IDD patients. Though social inclusion overall is increasing for people with IDD, the stigma remains.

For Family Cafe in Florida, this is one big reason they are committed to helping empower people with disabilities and their families through collaboration, friendship, education, and advocacy. In June, they hosted their 20th annual meeting bringing thousands of people together – patients, providers and everyone in between – to share, offer resources, demonstrate new technologies, and advocate for change to best address the many systemic barriers for people with IDD.

Super-Sized Collaboration

DentaQuest participated at this year's superhero-themed meeting and interest in oral health was high. Families attending the event had two different opportunities to get free dental screenings.

While visiting one of the dental screening areas sponsored by the Special Olympics, several folks shared that they had never seen a dentist before. We worked out a system to help those visiting the dental screening areas connect with our DentaQuest staff at the event so that we could help them find a regular source of care in their community. The DentaQuest staff also fielded questions about dental coverage options. If attendees were not aware that they could get a screening that day we helped direct them back to the screening areas.

In many ways, this proved to be a small-scale example of how people with IDD and their caregivers are falling through the health system cracks.

IDD Patient Population

Beyond not even knowing who will accept them as patients, individuals with IDD and their families struggle with universally applied rules such as requiring an annual dental exam to maintain certain insurance coverage or being subject to reimbursement codes that cannot account for complex and unique needs that providers should have for billing practices. These barriers are compounded by the general lack of understanding about the importance of oral health to overall health.

According to Special Olympics data, many of the athletes that participate in their program are unaware of their oral health status. Screenings indicate 46% of these athletes have periodontal conditions, 36% have untreated tooth decay, 14% are actually in need of urgent dental care, and 15% complain specifically of dental pain.

DentaQuest’s own Dr. Doug Manning and local outreach rep Judy Bryant spoke to families in attendance about how to find local providers – even providing lists – as well as advice for how to proceed in accessing oral health care based on a family’s unique situation. Others stopped by to share their frustration with the system - trouble with coverage, claims, getting an appointment, etc – providing us with valuable feedback to inform the way we approach the IDD populations we serve. Dr. Manning also gave a presentation on how to navigate the oral health care system and attendees discussed ways to make a positive impact through policy change at the federal and state levels and understanding the different types of coverage available for people with IDD. It proved to be a truly super event. See for yourself!