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Oral Health Care for Children and Youth With Developmental Disabilities

July 22, 2024

In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had disabilities, died at age 11. She spread sunshine in the lives of many and communicated using a thousand smiles.

“I want to go to this event about as much as I want to go to the dentist for a root canal.” Using humor to talk about the dentist is a way that many of us try to make light of the discomfort such visits may cause. The sounds of the tools, the smells, the tastes, mouth open for what seems like hours, the prick of the numbing needle, and so much more. These are hard to handle for many adults, let alone for children.

This is especially true for children and youth with developmental disabilities (DD) who often have complex medical issues and who navigate many systems and providers. For a child with DD who has an oral aversion, having your face touched for a dental cleaning or check-up feels impossible. Some children and youth with DD may require sedation for visits. Even if you overcome these challenges to receiving oral care, there may be barriers with:

  • Lack of insurance,
  • Lack of dentists who accept Medicaid,
  • Too many competing appointments,
  • Out of pocket expenses, or
  • Lack of dentists able/willing to work with children with DD.

In this month’s Pediatrics, the American Academy of Pediatrics (AAP)’s Section on Oral Health, Council on Children with Disabilities, and Section on Anesthesiology and Pain Medicine, published “Oral Health Care for Children and Youth With Developmental Disabilities: Clinical Report,” to highlight the unique needs of these children and offer guidance to provide such care (10.1542/peds.2024-067603).

What is an AAP clinical report?

It is a report created by members of the AAP to help guide pediatricians in the practice of medicine—a guide to care by doctors for doctors. The reports lay out best practices and the newest medicine. They cover topics such as hospital care, transition, substance use screening, children with medical complexity, and tools for screening. They are reviewed and, if needed, revised every five years.

What is in this clinical report?

This clinical report talks about the oral health needs of children and youth with DD. It emphasizes the importance of oral healthcare, as well as the unique needs of children and youth with DD that may affect if and how they access oral healthcare. The report covers a lot of topics and gives guidance about how to assess for an issue, types of treatments, risks, and benefits.

The report begins by looking at the basics of oral health—access to care (how to and barriers), how to coordinate it, when it is medically necessary, and transition. Next the report goes in depth on specific clinical topics, such as:

  • tooth decay,
  • gum health,
  • malocclusion (when teeth are not lined up, such as an overbite),
  • dental trauma,
  • self-injurious and adaptive behaviors, and
  • managing pain.

There is also a section that highlights key things to think about for dental treatment that requires sedation or general anesthesia.

How can you use this report?

  1. If you have a child or youth with DD, read it. There are topic headers so you can skim to find sections that relate to the oral health needs of your child.
  2. If your child has a dentist, share it with them to talk about concerns you may have for your child’s oral health or plan ways to improve the way to receive care.
  3. Use it to start a conversation with your child’s doctor about dental care. You can use it as a roadmap—to start talking about oral health, to map out how to get it, or plan how to make it safe and comfortable for your child.
  4. Oral healthcare for children and youth with disabilities has become an important topic for policy and advocacy. Use this report if you are doing any advocacy work—cite it and share it widely!
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