How Dentists are Prohibited from Disability Discrimination
By Thomas F. Coleman
Oral health is important to everyone, including the 5 million children and 2 million adults in the United States who have developmental disabilities. But gaining access to dental services for this patient population can be challenging.
There are a variety of barriers to dental care for patients with autism, Down syndrome, cerebral palsy, and intellectual disabilities. Lack of funding for dental services is one obstacle. Another is the reluctance or unwillingness of dental practitioners to accept and treat patients with these or other types of developmental disabilities.
“Reluctance is sometimes a product of fear. Fear of inadequacy and fear of the unknown. Reluctance can be overcome with education and practice. In and of itself, reluctance is neither illegal or unethical. But when hesitation becomes unwillingness, a line is crossed that implicates dental ethics and rules of professional conduct.”
Dentists who belong to the American Dental Association (ADA) are bound by its Principles of Ethics and Code of Professional Conduct. Those rules prohibit disability discrimination.
Other constraints against disability discrimination apply to dentists who are not members of the national association. Dentists who accept federal funds to pay for dental services for some of their patients must not engage in disability discrimination against any of their patients. Section 504 of the Rehabilitation Act of 1973 and rules adopted by the federal Department of Health and Human Services prohibit such discrimination.
There are also prohibitions against disability discrimination that apply to dentists who do not accept federal funds and who aren’t members of the ADA. Many states have laws targeting discrimination on the basis of disability in the delivery of services by private businesses.mState dental associations may also have their own codes of ethics. There are also generic statutes that impose discipline on dentists who engage in misconduct.
There’s no need to get deep into the weeds of federal and state regulations governing dental services for patients with developmental disabilities. A brief review of the ADA’s rules should suffice to alert dentists of their duties to this patient population.
The ADA Code has three main components: Principles of Ethics, Code of Professional Conduct, and Advisory Opinions.
“The Principles of Ethics reflect the aspirational goals of the dental profession. There are five fundamental principles: patient autonomy, nonmaleficence, beneficence, justice, and veracity. These principles have direct relevance to the treatment of dental patients with developmental disabilities.”
Under the ADA’s code of ethics, a dentist has a duty to respect the patient’s rights to self-determination. To adhere to this principle, a dentist must treat a patient according to the patient’s desires, within the bounds of accepted treatment. Dentists must involve patients in treatment decisions in a meaningful way.
When the patient is a child, it is the patient’s parent or guardian who must give or decline consent for a dental procedure. When the patient is an adult, it’s the patient who personally makes these decisions. The only exception would be when an adult is legally incapacitated.
All adults are presumed to have capacity to make medical and dental decisions. The mere diagnosis of a developmental disability does not rebut this presumption.
If an adult patient is living under an order of guardianship, a dentist must seek consent for dental treatment from the patient’s guardian. Otherwise, adult patients with developmental disabilities are entitled to exercise their right of self-determination, to have a dentist respect their desires, and to be involved in treatment decisions in a meaningful way.
Meaningful participation may require a dentist to provide special accommodations to patients with developmental disabilities in order to ensure effective communication and meaningful participation in the decision-making process. This may require consulting with someone skilled in providing disability accommodations. It may also require the involvement of an adult chosen by the patient to be a support person, health care agent, or medical proxy.
The Legislative Analyst's Office of the State of California has issued a report explaining the need for disability accommodations for dental patients with developmental disabilities. Dental treatments require extra appointments or longer appointment times because the patient needs extra time to alleviate anxiety or because the dentist cannot work as quickly as he or she would with another patient. Patients with developmental disabilities may need additional supports at appointments, such as special accommodations or behavior desensitization.
If there is no chosen support person, agent, or proxy available, a dentist may decide to refer the patient for a formal medical capacity assessment if the dentist has a reasonable professional opinion that the patient does not understand the risks or benefits of a particular procedure or is unable to communicate a voluntary decision.
Recommending that parents seek a guardianship, without first exploring less restrictive alternatives and without a capacity assessment by a qualified professional, may violate dental ethics prohibiting disability discrimination or violate federal and state disability nondiscrimination laws that apply to dental services.
To reiterate, self-determination requires that an adult patient personally give consent or withhold consent to treatment unless the patient has delegated decision-making authority to another person. Consent must be informed, meaning the patient understands the risks and benefits of the treatment or lack of treatment. Consent must be voluntary, meaning that the patient’s decision is not the result of duress or undue influence. For a delegation of decision-making authority to be valid, the patient must understand what they are doing and it must be voluntary. Dentists have an ethical duty to ensure that patient decisions are voluntary and informed.
The principle of nonmaleficence requires a dentist to refrain from harming a patient. The ADA code explains that under this principle, the dentist’s primary obligations include keeping knowledge and skills current, knowing one’s own limitations and when to refer to a specialist or other professional, and knowing when and under what circumstances delegation of patient care to auxiliaries is appropriate.
All dentists have a duty to keep their knowledge and skill current. This may require taking continuing education classes on dental care for patients with developmental disabilities. Dentists may not keep themselves uninformed and then use their lack of knowledge as a reason to deny dental care to this patient population.
The code further explains that dentists have an obligation to seek consultation, if possible, whenever the welfare of patients will be safeguarded or advanced by utilizing those who have special skills, knowledge, and experience. If they can’t find a knowledgeable colleague locally, a dentist can reach out to the American Academy on Developmental Medicine and Dentistry for information or a referral.
The National Institute on Dental and Craniofacial Research emphasizes that as a dental professional you also need to be aware of the different behavioral, physical, emotional, and cognitive needs that a patient with developmental disabilities may have. Learning appropriate skills and techniques to meet the unique oral health needs of people with developmental disabilities will help you be successful in delivering care to these patients.
To help dentists comply with their duty of continuing education, the American Dental Association and state dental associations should offer continuing education classes on dental care for patients with developmental disabilities.
The ethics principle of justice requires dentists to treat people fairly. Under this principle, a dentist must deliver dental care without prejudice.
The code of professional conduct explains that although dentists may exercise reasonable discretion in selecting patients for their practices, they shall not refuse to accept patients into their practice or deny dental service to patients because of the patient’s race, creed, color, gender, sexual orientation, gender identity, national origin, or disability.
An advisory opinion on disability discrimination in the Code of Ethics states: As is the case with all patients, when considering the treatment of patients with a physical, intellectual or developmental disability or disabilities . . . the individual dentist should determine if they have the need of another’s skills, knowledge, equipment or expertise, and if so, consultation or referral . . . is indicated.
Dentists should welcome patients with developmental disabilities just as they would welcome all patients. If they feel unprepared to treat such patients, they should consult with a colleague who has experience with this patient population, read literature on this topic, and provide accommodations necessary to include such patients in the decision-making process, either personally or through an agent chosen by the patient.
It would be unjust for a dentist to decline to treat patients with developmental disabilities because the dentist feels uncomfortable. It would also be unjust to exclude an adult patient from decision-making and defer choices to their parents simply because the patient has been diagnosed with a developmental disability.
A dentist should not prejudge a patient’s decision-making ability. All patients are presumed to have capacity. Denying a patient the right to make decisions or to delegate decision-making authority would be justified only when capacity has been found lacking on the basis of a thorough assessment performed by a qualified professional.
Dentists have an ethical obligation to identify and report the signs of abuse and neglect of children and vulnerable adults. This duty must be exercised concurrently with the ethical obligation to respect an adult patient’s right to self-determination and confidentiality.
If a dentist has a reasonable belief that a patient with a developmental disability has capacity or is presumed to have capacity but is being denied the right to make their own medical decisions, that abuse of their rights should be reported to the appropriate adult protective services agency. Coercion or undue influence in the process of consenting to or declining dental treatment is a form of dependent adult abuse.
Patients with developmental disabilities have recourse when they are adversely affected by a violation of dental ethics or disability nondiscrimination laws. With the assistance of parents, family members, or legal advocates, such patients can file administrative complaints to remedy any injustices they may have experienced.
The first step in the process of seeking redress would be to complain to the dental care provider. If that does not remedy the situation, a complaint can be filed with a state civil rights agency or with the Office of Civil Rights of the federal Department of Health and Human Services. Complaints may also be filed with a state or national dental association to which the dentist in question belongs.
Proactive measures would be much preferable to the use of such complaint procedures. State dental boards and dental associations should initiate educational programs and publish training materials to assist professionals who deliver dental care services to become familiar with the special needs of patients with developmental disabilities and how to apply the principles of ethics and the code of professional conduct to this patient population.
The medical rights of adults with developmental disabilities has been gaining attention.
The federal Department of Health and Human Services is in the process of finalizing rules prohibiting disability discrimination in the delivery of medical and dental services. The proposed rules would prohibit discrimination in the medical decision-making process.
In Missouri, the federally-funded Alternatives to Guardianship Project is convening a Medical Rights Workgroup. The workgroup consists of stakeholders with an interest in medical and dental care for patients with developmental disabilities. This includes self-advocates, parents, representatives from medical and dental associations, and officials from state and local government agencies with jurisdiction over health care services for this patient population.
With new federal rules on the horizon, and with patients who have developmental disabilities and their families becoming more aware of their rights, it would be wise for dentists, dental associations, and regulators of dental care to collaborate with a wide range of stakeholders to improve the delivery of dental services to this patient population.
References and Resources
Developmental Disabilities & Oral Health, National Institute of Dental and Craniofacial Research - Overview and Helpful Tips (Webpage)
Practical Oral Care for People With Developmental Disabilities, National Institute of Dental and Craniofacial Research - Continuing Education (Webpage)
Improving Access to Dental Services for Individuals With Developmental Disabilities, Legislative Analyst=s Office, State of California (2018 Report)
Developmental Disabilities & Oral Health, Byte (Webpage)
Oral Healthcare for Persons With Intellectual or Developmental Disabilities: Why is There a Disparity?
Compendium of Continuing Education in Dentistry (2017 Article)
Neglected for Too Long: Dental Care for People with Intellectual and Developmental Disabilities, National Council on Disability (2017 Report)
Incentivizing Oral Health Care Providers to Treat Patients with Intellectual and Developmental Disabilities, National
Council on Disability (2023 Report)
Continuing Education Webinars on Treating Dental Patients with Special Needs, American Dental Association (Website) (Free on Demand to ADA Members)
About the author
Thomas F. Coleman is the executive director of Spectrum Institute and a consultant to the Alternatives to Guardianship Project. With 50 years of advocacy experience as a civil rights attorney, Coleman has written extensively on legal capacity, medical rights, and disability discrimination. Email: tomcoleman@spectruminstitute.org More information: https://alternativestoguardianship.com/whatsnew.html