Improving Oral Health Outcomes for Children with Special Needs

Steven Perlman, DDS, MScD, DHL (hon), Barbie Vartanian, and H. Barry Waldman, DDS, MPH, PhD
Photo by the Viscardi Center


Photo by the Viscardi Center

February is National Children’s Dental Health Month, and Dentistry Today is celebrating the event with a series of blogs focused on various aspects of pediatric care. #NCDHM

In 2004, the Centers for Disease Control and Prevention (CDC) published the results of its 2001 National Survey of Children with Special Health Care Needs (NSCSHCN). It remains the largest study done involving this vulnerable population, comprising a telephone survey of 38,866 families of CSHCN. The number of CSHCN is estimated at 5% to 18% of the United States population, with 5% to 6% of the children having severe involvement.

Parents of CSHCN who responded to this survey ranked dental care second only to prescription medicine as a specific health service that was needed in the previous year. At 8.1%, dental care was the highest ranked health service needed but not provided to their children.

CSHCN are defined as “those children” who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.

What else did we learn from the 2001 survey and other related studies? We know that poorer children, children who are uninsured or those with lapses in coverage, and children with greater disabilities have increased odds of unmet dental needs. It is not surprising to note that children with a personal doctor or nurse were significantly less likely to have unmet dental needs. 

The Barriers 

What are the barriers to care for CSHCN that exacerbate and continue to perpetuate this great health disparity? We know a primary reason for this healthcare crisis is the lack of clinical and didactic education of dental and hygiene students. 

Until 2004, dental education had not mandated the dental care of persons with special needs. Accreditation standards for pre-doctoral education require graduates to be competent in assessing the treatment needs of patients with special needs.

However, having the ability to assess the needs of patients with disabilities upon graduation is very different from having the capacity and understanding to treat or manage those needs. Equally lacking are educational institutions with enough trained and competent practitioners to support the development of educational experiences for predoctoral students.

Reimbursement is also a significant barrier. Many CSHCN are primarily covered under Medicaid or the Children’s Health Insurance Program, which have extremely low reimbursement rates, resulting in a lack of providers who are willing to treat these children.

There is an uneven distribution of dentists nationwide as well, which means many areas do not have an adequate supply of practitioners to begin with. It is estimated that more than 14 million children live in Health Professional Shortage Areas (HPSAs). 

Another issue to consider is the stigma. Many healthcare professionals view the disability community as a low-reward population with a “spoiled identity” who demonstrate little respect toward those clinicians with an allegiance to treat these children.

Other complications involving the care of children with disabilities include both secondary conditions (any condition to which a person is more susceptible to by virtue of having a primary condition) and comorbidity, which refers to the existence of an additional disease after diagnosis of the primary disabling condition.

Children with intellectual and developmental disorders are also likely to have a seizure disorder, sensory processing disorder, or behavioral and mental health issues and are at greater risk of violence, non-intentional injury, and physical, emotional, mental, and sexual abuse.

They may also have dysphagia (swallowing issues), problems with constipation, and a susceptibility for aspiration pneumonia and obesity. Self-injurious behavior, hyperactivity, and sleep problems are prevalent as well. 

In 2017, the CDC reported that the rate of autism in the United States had risen to one in 59 births, which is a 23% increase over the previous two years. Autism also is five times more prevalent in boys than in girls.

The Solutions

These are the challenges. So, how do we make a change?

Since 2004, organizations such as the American Academy of Developmental Medicine and Dentistry, the American Academy of Pediatric Dentistry, Special Care Dentistry, and the Special Care Advocates in Dentistry have tried to make a difference, have tried to change the landscape, and have tried to change the Commission on Dental Accreditation (CODA). But they have had relatively little success in moving the bar. This is why the organization and creation of Project Accessible Oral Health is so important and timely.

Managed by the Viscardi Center—a network of nonprofits that educate, employ, and empower people with disabilities—Project Accessible Oral Health is a global public-private partnership and the first national nonprofit to assemble and connect a consortium of dental and medical professionals, corporations, organizations, policymakers, educators, people with disabilities, caregivers, and other stakeholders in pursuit of equal access to culturally competent oral healthcare. 

The Project’s mission is to act as a collective catalyst for change that will not only improve access to oral healthcare, but also ultimately improve the overall health equity of the disability community through constant focus on policy, education, marketing, and communications. 

As the numbers of CSHCN continue to grow, we must continually and intentionally bring awareness to this healthcare crisis. We must ensure every child has equal access and competent care. And, we must change the landscape.

Keystone First Family of Health Plans is doing just that. The Dental Program for People with Disabilities is a newly created program that will address these important issues through engaging, educating, and compensating providers to help increase access and knowledge of culturally competent communications and treatments for this population.

The Dental Program for People With Disabilities has created access to care resources by developing a subnetwork of “centers of excellence” that will have access to a training program to be developed by Keystone First Family Health Plans, Penn Dental Medicine, and the Maurice H. Kornberg School of Dentistry at Temple University. The program will launch in Southeast Pennsylvania on April 1, with the intent that the program model serve as a template that can be utilized in other markets.

Collaborations with alternative, nontraditional organizations will allow CSHCN to finally receive the care they undoubtedly need and overwhelmingly deserve. 

Dr. Perlman is the global clinical director and founder of Special Olympics Special Smiles. He also is a clinical professor of pediatric dentistry at the Goldman School of Dental Medicine at Boston University. He can be reached at

Ms. Vartanian is the executive director of Project Accessible Oral Health. Previously, she was chosen to lead the Pacific Dental Services Foundation. She also is the mother of a child with special needs. She can be reached at

Dr. Waldman is a State University of New York Distinguished Teaching Professor in the Department of General Dentistry, School of Dental Medicine, at Stony Brook University. He can be reached at  

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