Providing Care to Individuals With Special Healthcare Needs

More than 50 million Americans have a developmental, physical, or mental disability that substantially limits one or more major life activities.¹ The U.S. Surgeon General’s Oral Health Report acknowledged disparities for individuals with special healthcare needs (SHCN) and identified this population as the most underserved of the underserved.² Inadequate community preventive measures, lack of reimbursement, lack of oral healthcare professionals trained and willing to work with people who have special needs, and inability to access care in a traditional dental office setting all affect the ability of those with special needs to access dental care. Due to these challenges, several national organizations have asked the Commission on Dental Accreditation to revise its standards to ensure that dental hygiene students receive appropriate education for managing patient care for individuals with SHCN.³ Individuals with SHCN are defined in the accreditation standards as “those patients whose medical, physical, psychological or social situations make it necessary to modify normal dental routines in order to provide dental treatment. These individuals include, but are not limited to people with developmental disabilities, complex medical problems, and significant physical limitations.”⁴ There is growing consensus that increasing the involvement of dental hygienists in public health can help address the problem this population faces accessing oral healthcare.^5-6

WHAT IS SPECIAL PATIENT CARE?

Individuals with SHCN are at increased risk for developing oral diseases.² The specific issues common to individuals with SHCN are summarized in Table 1.^7-16 Each condition has multiple associated conditions and related oral conditions, for example, cognitive disabilities, developmental delays and metabolic disorders are associated with autism. People who have autism may prefer a soft diet and sweet foods. They may have poor tongue coordination and/or “pouch” their food. Oral injuries may also be more common due to accidents and self-injurious behaviors. Another significant group of SHCN individuals is older adults. Approximately 50% of people over the age of 65 carry a diagnosis of at least one chronic disease such as heart disease, dementia, Alz heimer’s, stroke or Parkinson’s disease.¹⁷ Older adults often experience xerostomia, poor plaque control, caries, periodontal diseases, hard tissue changes, and soft tissue changes.²

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TABLE 2. INFORMED CONSENT CHECKLIST²⁰

• Name of patient and date of birth
• Legal name of person giving consent and relationship to patient
• Description of procedure in simple terms
• Disclosure of risks associated with procedure
• Other evidence-based alternatives
• Place for person giving consent to state all questions have been asked and adequately answered
• Place for signature of person giving consent, person providing care, and a witness

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LEGAL OBLIGATIONS

The Americans with Disabilities Act (AwDA) defines disability as “a physical or mental impairment that ‘substantially’ limits one or more of the major life activities; a record of such impairment (diagnosis and recovered); or being regarded as having such an impairment (assuming a patient has an impairment).” Under this act, major life activities include (but are not limited to): caring for oneself, interacting with others, performing manual tasks, walking, wearing, seeing, reading and working. Title III of the AwDA prohibits discrimination against disabled persons in public accommodations, commercial facilities and public transportation services. A private dental office is considered a place of public accommodation and is required to serve individuals with disabilities.¹⁸ Oral healthcare providers must be familiar with AwDA regulations and ensure proper compliance.

Dental hygienists are obligated to treat people with disabilities the same as nondisabled patients. Disabled patients and nondisabled patients must be referred for the same procedures. The dental office may only refuse to admit a disabled person if the disabled person poses a direct threat (significant risk that cannot be eliminated using special procedures) to the health or safety of others.¹⁸

The AwDA requires that people with disabilities have the ability to access a dental office. Offices are required to make reasonable accommodations to facilitate access by people with disabilities unless it can be shown that taking those steps would result in an undue burden or hardship. This may require making modifications, including an operatory designed to allow for wheelchair transfer.¹⁸

The AwDA also requires dental hygienists to effectively communicate with patients and legal guardians. For example, a pediatric patient may not have a disability but his or her parent may be hearing impaired. Dental offices are required to make accommodations for the person giving informed consent (the parent) even if the patient does not have the disability. For patients or guardians who have a hearing disability, a sign language interpreter and/or the use of a telephone relay service may be necessary. The AwDA prohibits imposing a surcharge on patients with disabilities for the cost of auxiliary aids and services. The AwDA guarantees people with disabilities the right to be accompanied by a service animal in all areas open to the general public (even health care settings). Service animals must be permitted into the dental office but not necessarily into the operatory.

PATIENT MANAGEMENT

The dental hygiene objectives for providing care to individuals who have SHCN include: personal oral care to prevent infection; contribute positively to the patient’s general health; prevent tooth loss to prevent subsequent malnutrition and infection; prevent need for extensive dental and periodontal therapy that may not be well tolerated; aid in improved appearance, which enhances social acceptance; and, most important, make appointments pleasant and comfortable.¹⁹ Oral healthcare providers need to build patient rapport and trust. Chewing, swallowing, communication, self-esteem, self-expression, facial esthetics, and protection from infection are critical factors for the oral healthcare provider to consider when developing a care plan. The urgency of the patient’s oral health needs must also be considered and decisions should be based on potential benefits vs potential risks. Parents and legal guardians must share in the decision-making process.²⁰ The oral healthcare provider must determine the appropriate length of the appointment to accommodate the patient in an efficient and effective manner, attain informed consent from the appropriate individual, communicate suitably and in a non-discriminatory way, and ascertain ways to manage the patient’s behavior using the least restrictive environment.

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TABLE 4. FRANKL BEHAVIOR RATING²⁶

Frankl Rating 1: Definitely negative behavior, refuses treatment, cries, combative, overt negativism.
Frankl Rating 2: Negative, reluctant to accept treatment, uncooperative, may be withdrawn.
Frankl Rating 3: Positive, accepts treatment with caution, willing to comply with treatment
Frankl Rating 4: Definitely positive, good rapport with dental team, has a great time, interested in dental procedures.

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When providing oral healthcare to individuals who have SHCN, determining who is legally able to give informed consent, how to access health history information, and who to speak with about follow-up care my be difficult. The patients’ case manager may be willing to help address these issues. Patients must provide appropriate informed consent for all dental treatment or have someone who can provide it for them. Consent is generally provided by a legally competent patient or by the legal guardian of a patient who is not competent. A natural or adoptive parent may not provide consent for a patient who is mentally incompetent and has attained legal age unless he or she has been appointed as the legal guardian. Table 2 provides a list of items that must be included when attaining informed consent.²⁰

CRITICAL CONSIDERATIONS

One of the most critical facets of communicating about SHCN and disabilities is person-centered language. Terms such as “retarded” and “handicapped” are no longer appropriate. Instead, dental hygienists are encouraged to use “People First Language,” which was started by individuals who said, “We are not our disabilities!”²¹ For example, “Molly’s autistic” is not appropriate. “Molly has autism” is the preferred language. For more information, visit www. disability is natural.com/ explore/ language-communication.

The dental hygienist must also learn how to select and apply behavior guidance techniques to establish communication, alleviate fear and anxiety, deliver quality dental care, build a trusting relationship between dental hygienist and patient, and promote a positive attitude toward oral health. This can be very challenging. Behavior guidance requires exceptional communication, empathy, coaching, and listening skills. Deferral or modification of treatment may be appropriate if routine care cannot be provided using communicative guidance techniques.^7,20 Table 3 summarizes behavior guidance options. When selecting a behavior guidance technique, the oral healthcare provider must try to gain cooperation from a patient in the least restrictive manner. This should be documented in the informed consent. Protective stabilization should be a last resort, and must not cause harm to patients or be used for punishment or convenience. There is no consensus regarding protective stabilization between states, agencies, facilities or practitioners. Local agencies, boards and courts should be checked to determine legalities.^20,25 Documentation when using protective stabilization must include: informed consent, justification for stabilization, type of restraint used, duration of application, frequency of stabilization evaluation and safety adjustments, and behavior evaluation/ rating during stabilization. A well-known tool to objectively rate behavior in the dental chair is the Frankl Behavior Rating (Table 4).²⁶ This can be implemented very easily at any office.

Dental hygienists have a unique opportunity to help individuals with SHCN overcome access to care disparities. With a better understanding of the oral healthcare issues associated with SHCN and increased knowledge about how to modify and manage oral healthcare appointments, dental hygienists are a viable source of help for individuals with SHCN.

REFERENCES

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4. Commission on Dental Accreditation. Accreditation standards for dental education programs. Chicago: American Dental Association, July 30, 2004.
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20. American Academy of Pediatric Dentistry (AAPD). Clinical guideline on behavior guidance for the pediatric dental patient. Chicago (IL): American Academy of Pediatric Dentistry (AAPD); 2005.
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24. Ellisa EM, Ala’i-Rosales SS, Glenn SG, Rosales-Ruiz J, Greenspoon J. The effects of graduated exposure, modeling, and contingent social attention on tolerance to skin care products with two children with autism. Research in Developmental Disabilities. (2005).
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26. Frankl SN, Shiere FR, Fogels HR. Should the parent remain with the child in the dental operatory. J Dent Child 1962;29:150-63.

From Dimensions of Dental Hygiene. May 2010; 8(5): 64-67.