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Case Information Points (printable version)

Preparing Staff to Meet the Needs of Patients with Sensory Impairments
Importance of Orientation & Mobility for Patients with Sensory Impairments
Personal Care Assistants
Proper Etiquette for Offering Assistance to Persons with Visual Impairment
Personal Wireless (FM) Systems
Preserving Confidentiality
Common Medical Causes of Visual and/or Hearing Deficits
Communication Concerns during Treatment
Usher Syndrome: A Major Cause of Deafblindness
Competency and Informed Consent
Patient Rights to Reasonable Accommodations and the ADA


Preparing Staff to Meet
the Needs of Patients with Sensory Impairments

Many persons without disabilities feel uncomfortable around individuals with disabilities. Although the passage of the Americans with Disabilities Act (ADA) helped remove many environmental barriers, legislation cannot eradicate invisible attitudinal hurdles. Receptionists can be the first contact for patients with disabilities, and are in a unique position to make a welcoming first impression. Therefore, reception etiquette is of paramount importance, and reception staff should be aware of the location of accessible restrooms, water fountains, telephones, and other facilities in the building. In addition to this information, office staff should be prepared to provide patients having sensory impairments with the location of public transportation stops convenient to the office - and/or specific and safe walking directions. Informational materials are often more accessible to individuals with significant sensory impairments if offered in an electronic format (which may then be accessed by a screen-reader or Braille software); thus it is expedient to offer this accommodation whenever possible.

Other office staff including dental assistants and hygienists should also be educated concerning both proper etiquette and potential treatment modifications for individuals with hearing and/or visual impairments. For example, staff should be made aware of the proper technique for offering assistance with mobility and/or orientation to individuals with blindness, or proper conversational manner when working with an individual with deafness who may use an interpreter. Basic types of assistive hearing/communication devices should be discussed. It may be helpful to outline specific procedures for accommodating those with sensory impairments formally via inservice trainings, etc.


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Importance of Orientation and Mobility
for Patients with Sensory Impairments

Providing cues and assistance for orientation is an effective way to reduce a patient's anxiety about navigating the dental office and to build rapport. When approaching a patient with visual or dual sensory impairments, it is appropriate to first introduce yourself by name while indicating your presence and position with a light tap on the shoulder, elbow, or hand. Be sure to alert the patient to changes in your location. As you verbally orient the patient to the office or operatory, describe the location of objects in the room (desk, tables, doorways, operatory chair, etc.) relevant to the patient (e.g., "on your right") and as specifically as possible. It may be necessary to facilitate tactile orientation to the environment when the patient experiences deafblindness. When you speak to a staff member, assistant, or patient during the procedure, make sure to use his or her name so that the patient knows whom you are addressing.

Prior to the appointment, ensure that the patient has a clear pathway from the entrance of the operatory to the operatory chair. Thoroughly describe any procedures before initiating treatment - and allow the patient to handle the dental tools, if requested. Establish a system of communication about relevant aspects of treatment, including yes/no responses and a means for the patient to notify you of pain and/or discomfort. See the Resource Document regarding the importance of nonverbal communication for more information.


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Personal Care Assistants

Many individuals with significant disabilities are unable to complete some or all activities of daily living, such as bathing, toileting, dressing, eating, or communicating (ADL's). In addition, an individual with severe mobility limitations may often need help with ambulation and/or transfers. A personal care attendant is often required by the individual to perform some or all ADL's. This assistance allows the person to function more fully at home and in the community. A personal care attendant (PCA) may be a family member or (more typically) an employee of the person with a disability. Occasionally, the PCA has been hired by a family member. In some cases the PCA is a licensed care provider, such as a nurse, depending on the level of care required.

It is important to remember that the role of the PCA is to assist the person with the disability in the way that person sees fit. The PCA's role, however, should not be to make decisions for, or speak for the person in their care. Healthcare providers should direct their questions to the individual requesting service. The only time that the PCA should speak for a person is when interpretation is required, such as in sign language use, or when severe cognitive impairment precludes meaningful communication. Personal care attendants may also help others speak with the person by instructing them in the use of assistive communication devices.

*The title of Personal Care Attendant is being replaced within the discipline by personal assistant. Personal assistant more positively and accurately reflects the functional support provided by such individuals.


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Proper Etiquette for Offering Assistance
to Persons with Visual Impairment

Many people become uncomfortable when working with individuals having significant visual impairment or blindness. One cause for discomfort frequently voiced involves the concern regarding proper etiquette for interacting with such individuals, particularly regarding how and when to offer assistance.

Every patient with sensory impairment is certainly an individual; thus, there can be no standard procedure that will be appropriate in every case. However, there are some generally accepted guidelines to remember which may preserve the patient's dignity and patient-dentist rapport:

  • When a person with a visual impairment enters the dental office, especially if it is his or her first visit, it is appropriate to approach the individual, introduce oneself, and provide verbal orientation to the office.
  • Adults should always be treated as adults.
  • When meeting a person with a visual impairment, always identify yourself and anyone else who may be with you.
  • Feel free to offer assistance to a person with a disability or ask how you should act or communicate, but do not automatically assume that the person needs assistance. Wait until the offer is accepted. Then, the individual can let you know what action he or she prefers.
  • If the individual with a visual impairment would prefer to be physically guided through the facility, it is preferable to offer one's right elbow as opposed to grasping the person by the arm.
  • If assistance is required in order to complete paperwork, confidentiality of the individual must be preserved as mandated by HIPAA guidelines. It may be expedient to provide a private room for the patient, especially if he or she requires that the questions be answered verbally.

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Personal Wireless (FM) Systems

Individuals with hearing impairment may use some type of assistive device to augment residual hearing capacity. These may include hearing aids, personal FM systems, or induction loop systems (see Resource Document link for more information).

Personal wireless (FM) systems consist of a microphone/transmitter and receiver component which is typically small enough to be discretely worn on the body. Normal radio signals are transmitted from a microphone carrying the audio content to the receiver. The microphone may be worn by the speaker or be used in a loop system on a desktop.

There are three types of receivers: those worn on the body, those worn behind the ear, and those used on a desktop. FM systems work by broadcasting the speaker's voice directly to the listener's ear and optimizing signal to noise ratio. FM receivers are often used in conjunction with hearing aids. Some types of hearing aids are available with built-in FM receivers. FM systems may be susceptible to interference from other radio users.

The dentist should also be aware that assistive listening devices frequently distort in the presence of loud or high pitched environmental noise - thus devices such as hearing aids or FM systems may need to be turned off during some aspects of treatment. An alternative method of communication should be established for the patient in this situation - such as the use of hand signals. Increasing the volume of one's voice is not typically helpful for individuals using assistive devices, as distortion may occur.


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Preserving Confidentiality

One specific challenge dentists and other healthcare providers may find themselves facing is how to afford informational privacy and confidentiality for patients with disabilities. For example, individuals with significant disabilities may employ a personal care assistant (PCA). The personal care assistant may, by necessity, be present during dental or other care visits. It is thus important to offer privacy to the patient during both the medical history and treatment portions of the exam. This may be accomplished by having a staff member assist the patient with completion of office documentation and/or other needs if so desired during the visit. Do not assume that the patient wishes to share all his/her information with the PCA. It is, of course, the patient's call.

Often patients with visual impairment (including elderly patients without developmental disabilities) need to verbally respond to questions read aloud to them. When this is the case, the dental staff should insure that such history is taken in a quiet, private location - not in the waiting room where other persons may overhear personal information.

Due to the advent of email and other forms of electronic communication in recent years, individuals with visual and/or auditory impairments may prefer/request that any medical or health history questionnaires be available to them electronically to complete on their own computer and email to the dental office. Many people with visual impairments will have screen readers installed on their home computers, and/or be able to directly transform electronic documents into Braille format. The dentist should then review the materials prior to the visit in order to promote efficiency in communication and help preserve confidentiality, mandated by the Health Insurance Portability and Accountability Act (HIPAA).


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Common Medical Causes of Visual and/or Hearing Deficits

Several genetic and medical conditions exist which may result in varying degrees of visual or hearing deficit. Some inherited (genetic) causes of sensory deficit include Alport syndrome, Alstrom syndrome, CHARGE Association, Down syndrome, Oculo-auriculo-vertibrali (OAV) spectrum (Goldenhar syndrome, hemifacial microsoma), Marshall and Stickler syndromes, Rubella syndrome, Usher Syndrome, and Waardenburg syndrome (see resource document for more information). It is important for dentists to remember that individuals with genetic syndromes may also experience associated medical conditions which may impact the provision of dental care, such as those oral findings frequently seen in individuals with Down syndrome.

In addition to genetic conditions, there are general medical conditions, such as diabetes mellitus, which may lead to progressive loss of vision (diabetic retinopathy). Stroke, fetal alcohol syndrome, and retinopathy of prematurity are also potential causes of visual and/or hearing loss. Certain systemic infections such as cytomegalovirus (CMV), toxoplasmosis, herpes, syphilis, AIDs or rubella may result in visual and/or auditory impairment. Injuries account for a small number of cases of visual and auditory deficit. High fevers during early childhood may also result in some permanent sensory damage.

Both auditory and visual function also may decrease with advanced age due to physiological changes, such as cataracts.


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Communication Concerns during Treatment

Communication between patient and dentist is imperative, of course, no matter whether or not the individual has a sensory impairment. However, communicating optimally with a patient who is blind and/or deaf during treatment may require the dentist not only to potentially modify typical procedure, but to become somewhat innovative in communication techniques.

As previously noted, patients with hearing loss frequently use assistive hearing devices that might need to be turned off during treatment due to sound distortion from dental instruments. Patients with congenital hearing loss or deafness who rely on sign language may have difficulty communicating their comfort level in the absence of an interpreter. The dentist and patient may need to work out a gestural system of communicating pain or discomfort prior to initiating treatment.

Communication becomes even more challenging when the patient with sensory deficit also has a significant cognitive disability. The dentist must remain alert to nonverbal cues which may indicate discomfort or pain. Depending on the individual patient's level of cognitive development, these may include behaviors such as grimacing, evasive struggling, crying, or holding the breath. The dentist should observe for involuntary signs of discomfort as well, including flushing or pallor, changes in respiration, decrease in heart rate, or vomiting.

Additionally, when communication difficulties are present due to either sensory or cognitive impairment, it may be difficult to determine if the patient fully comprehends information concerning treatment instructions and options. Extra time should be taken to thoroughly explain procedures and options to the patient, and to the legal guardian (if the person has a legal guardian) to obtain informed consent. The dentist may not provide treatment without legal informed consent.


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Usher Syndrome: A Major Cause of Deafblindness

While the specific etiology of Mr. Brown's deafblindness is not identified or discussed in this script, the most common cause of deafblindness is Usher syndrome. Usher syndrome is an autosomal recessive genetic disorder, and is estimated to account for more than 50% of cases of dual sensory impairment, 18% of cases of retinitis pigmentosa, and approximately 3% to 6% of cases of congenital deafness. The frequency of Usher syndrome in the United States is approximately 4.4/100,000.

The major symptoms of Usher syndrome include progressive vision and hearing loss, as well as vestibular dysfunction. There are three discrete clinical categories of Usher syndrome: Type I, Type II, and Type III. The three categories are distinguished primarily by severity and age of onset of the various symptoms. Type I Usher syndrome is characterized by congenital severe to profound hearing impairment, progressive retinal degeneration beginning in childhood, and vestibular dysfunction. Type II Usher syndrome is characterized by moderate to severe hearing impairment, normal vestibular functioning, and a later onset of retinal degeneration. Type III Usher syndrome is the rarest form, and is characterized by progressive hearing impairment with variable retinal and vestibular symptoms.

The specific genes involved in the expression of the various types of Usher syndrome, as well as means of prevention and treatment, are currently under investigation. It is recommended that children evidencing hearing impairment be screened for Usher syndrome.

References

Astuto, L.M., Bork, J.M., Weston, M.D., Askew, J.W., Fields, R.R., Orten, et al. (2002). CDH23 mutation and phenotype heterogeneity: A profile of 107 diverse families with Usher syndrome and nonsyndromic deafness. American Journal of Human Genetics, 71(2), 262-275.

Usher Syndrome. Retrieved on November 28, 2005 from http://www.nidcd.nih.gov/health/hearing/usher.asp


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Competency and Informed Consent

Consent is a legal and medical doctrine, and is defined as "the mental ability and cognitive capacity required to execute a legally recognized act rationally" (Leo, 1999, p. 131). The ability to give consent is a legal determination; however, competency to consent to treatment should be presumed, absent a legal finding of incompetency.

The need for informed consent may be waived in cases of medical emergency. Such an exemption is defined by a situation wherein immediate care is required when a condition, if not immediately treated, will lead to severe disability or death. Another person is qualified to give consent on behalf of the patient only if he or she has durable power of attorney for health care decisions - or is the patient's legal guardian/conservator.

Having a disability does not imply legal incompetence. However, the presence of certain types of disabilities may result in implications for obtaining informed consent. For example, a person with significant visual impairment should have consent to treatment forms and other informed consent materials available in a format that he or she can use (e.g., Braille, large-print, electronic text, etc.). Many individuals with sensory impairments now have home computers equipped with screen readers and/or Braille hardware and software. Alternatively, consent forms may be read aloud to the patient in a private setting. The critical element of informed consent for patients with disabilities is that the necessary information be provided in an accessible format.

*See Resource Document for Further Information.


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Patient Rights to Reasonable Accommodations
and the Americans with Disabilities Act

In 1990 the Americans with Disabilities Act (ADA) was passed. This act represented landmark legislation in the United States which broadly addressed the specific needs and rights of individuals with disabilities. There are ten titles under the ADA - each addressing different areas of potential discrimination.

Title III of the ADA targets the rights of individuals with disabilities to accommodations within public services (e.g., healthcare settings). It is important for all healthcare providers to have a basic understanding of patient rights under the ADA, more so for individuals who may privately own and operate clinics providing such services.

The ADA generally defines an individual with a disability as someone who: a) has a physical or mental impairment which substantially limits one or more major life activities; b) has a record of such impairment; or c) is regarded as having such an impairment.

The ADA mandates that providers of healthcare services provide "reasonable accommodation" to individuals with disabilities. Although the term "reasonable accommodation" has left much room for litigation within this arena, it is defined as that which will not place an undue hardship on the individual/business. Obviously the term 'undue hardship' itself contains ambiguity, e.g., a large corporation would certainly be expected to spend more on accommodating its employees/customers than a small family-run operation. It is important to note that most accommodations may be accomplished for a cost of $500 or less.

Some (of many) examples of reasonable accommodation are as follows:

  • Admittance of a service animal (legally mandated)
  • Making post-care instructions available in alternate formats for those with visual impairment
  • Scheduling additional clinic time for individuals with special needs
  • Modification in office routine, i.e., admitting a personal care assistant to the patient's exam or performing care while patient remains seated in a wheelchair.

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