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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