One in five Americans has a disability. There is a good chance that you interact everyday with somebody who has a disability, perhaps without even knowing it.
Tips for Communicating with People with Disabilities
What is a developmental disability?
As you interact with people, you may have questions about what a particular disability means. Click on an item below to learn more.
Services at the Center on Disabilities and Human Development
Tips for Communicating with People with Disabilities
1. First and most important - people with disabilities, like everyone else, deserve to be treated with dignity and respect. People with disabilities have different personalities and different preferences about how to do things. To find out what a person prefers, ask.
2. When you meet someone with a disability, it is appropriate to shake hands - even if a person has limited hand use or artificial limbs. Simply touch hands (or the person's prosthesis) to acknowledge his/her presence. Shaking the left hand is also fine.
3. Always ask before you assist a person with a disability, and then listen carefully to any instructions. Do not interfere with a person's full control over his/her own assistive devices. For example, before you push someone who uses a wheelchair, make sure to ask if they want to be pushed. Likewise, never move crutches or communication boards out of the reach of their owners without permission.
4. Remember, most people with disabilities want to serve as well as be served and enjoy assisting others.
5. Usually people with disabilities do not want to make the origin or details of their disability the first topic of conversation. In general, it's best not to ask personal questions until you've become real friends.
6. Be considerate of the extra time it might take a person with a disability to get some things done.
7. Speak directly to the person with a disability rather than to a companion or sign language interpreter who may be along.
8. Relax. Don't be embarrassed to use common expressions such as "I've got to run now," "See you later," or "Have you heard about" even if the person doesn't run, see or hear well. People with disabilities use these phrases all the time.
9. Some terms that might have sounded acceptable in the past, such as "crippled", "deaf and dumb" and "wheelchair-bound" are no longer accepted by people with disabilities. Many have negative associations. Instead say "person with a disability," "Mary is deaf (or hard of hearing)" "Denise uses a wheelchair," and "Joe has mental retardation." This type of language focuses on the person first, and their disability afterwards.
10. Avoid excessive praise when people with disabilities accomplish normal tasks. Living with a disability is an adjustment, one most people have to make at some point in their lives, and does not require exaggerated compliments.
11. Don't lean on a person's wheelchair - it's considered an extension of personal space.
12. When you talk to a person in a wheelchair for more than a few minutes, try to sit down so that you will be at eye level with that person.
13. Don't pet a guide or companion dog while it's working.
14. Give unhurried attention to a person who has difficulty speaking. Don't pretend to understand when you don't -- ask the person to repeat what they said.
15. Speak calmly, slowly and directly to a person who is hard of hearing. Don't shout or speak in the person's ear. Your facial expressions, gestures, and body movements help in understanding. If you're not certain that you've been understood, write your message.
16. Greet a person who is visually impaired by telling the person your name and where you are. When you offer walking assistance, let the person take your arm and then tell him or her when you are approaching inclines or turning right or left.
17. Be aware that there are many people with disabilities that are not apparent. Just because you cannot see a disability does not mean it doesn't exist.
18. Whatever you do, don't let fear of saying or doing something "wrong" prevent you from getting to know someone who has a disability. If you are unsure of what to say when you first meet, try "hello."
19. Help make community events available to everyone. Hold them in wheelchair accessible locations. This makes it easier for everyone!
Source: National organization on Disability website. http://www.nod.org/cont/dsp_cont_item_view.cfm?viewType=itemView&contentId=152&fromLocHmePg=T&fromLocationId=6&timeStamp=05-Aug-0211:47:16 August 5, 2002.
Section states “an individual with disability is one who has physical or mental impairment that substantially limits one or more “major life activities, one who has record of such an impairment, or is regarded as having such an impairment.”
What is a developmental disability?
Definition stated in Comprehensive Services and Developmental Disabilities Amendment of 1978, & P.L. 95-602: A developmental disability is a severe, chronic disability of a person that:
A. is a mental and/or physical impairment;
B. is manifested before the age of 22;
C. is likely to continue throughout live;
D. substantially limits functioning in three or more of the following areas:
self-care,
receptive and expressive language,
learning,
mobility,
self-direction,
capacity for independent living, and
economic self sufficiency; and
E. results in a need for individualized, interdisciplinary services of extended duration.
The definition used by the state’s Community Developmental Disabilities Program as a basis for estimating the population eligible for services is the same definition contained in the “Idaho Developmental Disabilities Services and Facilities Act,” Idaho Code 39-4604. The definition reads:
A developmental disability is (a) attributable to an impairment, such as mental retardation, cerebral palsy, epilepsy, autism or other condition found to be closely related or similar to one of these impairments that requires similar treatment or services or is attributable to dyslexia resulting from such impairments; (b) has continued or can be expected to continue indefinitely; and (c) constitutes a substantial handicap to such person’s ability to function normally in society.
A substantial handicap is (a) a disability which results in substantial function limitation in three (3) or more of the following areas of major life activity:
self-care,
receptive and expressive language,
learning,
mobility,
self-direction,
capacity for independent living, and
economic self-sufficiency; and
(b) reflects the need for a combination and sequence of special, interdisciplinary or generic care, treatment or other services which are:
lifelong or extended in duration, and
individually planned and coordinated.
The above Idaho definition of developmental disabilities differs from the federal definition only in the areas of reference to specific impairments, such as mental retardation, and in the omission of a section of the federal definition which indicates the disability is “manifested before the age of 22.” However, the Department of Health and Welfare developmental disability services are limited by policy and rules to persons whose handicap was manifested before age 22 and are primarily attributable to mental retardation, cerebral palsy, epilepsy, or autism. (From the State of Idaho Department of Health & Welfare Comprehensive Developmental Disabilities System Plan, 1990-1991-1992).
The most widely accepted definition of mental retardation from the American Association of Mental Retardation (AAMR)[1]. The major components of the AAMR definition include:
1. Significant subaverage general intellectual functioning (defined as a score which is two standard deviations below the mean on an individual test of intelligence);
2. Adaptive behavior deficits that are defined as significant limitations on a person’s ability to meet standards of maturation, learning, personal independence, and social responsibility; and
3. A time interval specifying that the disability must occur during the period from birth to 22 years-of-age.
Persons with mental retardation vary in their abilities, just as the general population does. It is more important to focus on what the person can do than focus on his/her limitations. Remember, persons with mental retardation are more like us than not!
The American Association on Mental Deficiency (AAMD) further defines areas where deficits in adaptive behavior can be found within different ages groups. Deficits in adaptive behavior during infancy and early childhood include:
sensory-motor skills,
communication skills (speech and language),
self-help skills,
socialization skills (interacting and getting along with others).
Defects in adaptive behavior during childhood and early adolescence include:
application of basic academic skills in daily life activities,
application of appropriate reasoning and judgement in mastery of the environment, and
social skills (participation in group activities and interpersonal relationships).
Defects in adaptive behavior during late adolescence and adulthood include vocational and social responsibility and performance.
There are many known causes of moderate, severe, and profound mental retardation. These have been categorized by the AAMD as:
1. infections and intoxication (e.g., rubella, syphilis, encephalitis, meningitis),
Disabilities Can Help Make a Good Community Better by Robert Perske, 1980,
2. trauma and physical agent (e.g., accidents before, during, and after birth; anoxia),
3. metabolism and nutrition (e.g., phenylketonuria or PKU),
4. gross brain disease (such as tumors),
5. prenatal influence (e.g., hydrocephalus, micro cephalus),
6. chromosomal abnormality (such as Down’s syndrome), and
7. gestational disorders (premature births).
Revisit and remember the concepts of normalization. No matter the degree of severity of the disability all people want to live life to the fullest.
Cruickshank (1976)[2] defines cerebral palsy as a neurological syndrome evidenced by motor problems, general physical weakness, lack of coordination, and physical dysfunction. The syndrome is not contagious, progressive or remittent. Its seriousness and overall impact can range from mild to severe. A variety of classification schemes have been used to describe the different types of cerebral palsy, but the two major schemes for classification focus on the motor and topographical characteristics of the syndrome. The motor scheme emphasizes the type and nature of physiological involvement or impairment. The topographical scheme focuses on the various body parts or limbs affected.
Several categories of motor involvement have been identified, each recognizing the nature and extent of brain damage involved. They are:
1. Spasticity. An individual with spastic cerebral palsy experiences great difficulty in using muscles for movement. Involuntary contractions of muscles occur when the individual attempts to use various muscle groups. Spasticity prevents the person from performing controlled or voluntary motion.
2. Athetosis. An individual with Athetosis is characterized by consistent contorted twisting motions, particularly in the wrists and fingers. Facial contortions are also common. The continual movement and contraction of successive muscle groups prevent well-controlled muscular motion.
3. Ataxia. An individual with ataxia experiences extreme difficulties controlling both gross and fine motor movements. Problems related to balance, position in space, and directionality makes coordinated movement extremely difficult, if not impossible.
Rigidity. An individual with rigidity has one of the most severe and rare types of cerebral palsy. This condition is characterized by continuous and diffuse tension as the limbs are extended. Walking or movement of any types is extremely difficult.
5. Tremor. An individual with tremors manifest motions that are constant, involuntary, and uncontrollable. The motions are of a rhythmic, alternating, or pendular pattern. They are a result of continual muscle contractions.
6. Atonia. An individual with atonia has little if any muscle tone. The muscles fail to respond to any stimulation. This condition is extremely rare in its true form.
7. Mixed. An individual with mixed cerebral palsy may manifest parts and combinations of all the conditions described above.
The topographical classification approach refers not only to designations given to individuals with cerebral palsy, but also to those who have paralytic conditions from accidents or neurological diseases such as polio. The topographical classification system includes seven categories.
1. Monoplegia, involves one limb.
2. Paraplegia, involves the legs only.
3. Hemiplegia, involves one side of the body in a lateral fashion.
4. Triplegia, involves three appendages or limbs, usually both legs and one arm.
5. Quadriplegia, involves all four limbs or extremities.
6. Double hemiplegia, affects both halves of the body, with one side more involved than the other.
Because cerebral palsy affects movement, coordination and speech, it often givens a person the appearance of being more disabled than he/she actually is.
Autism is a complex combination of biological symptoms manifested before 30 months of age and includes disturbances of:
developmental rates,
responses to sensory stimuli,
speech, language, and cognitive capacities, and
capacities to relate to people, events and objects.
Lovaas (1977)[3] described six common characteristics of person with autism. They include:
1. Apparent sensory deficit. (The person might not respond to loud noises or might not seem to see things. However, there is great variability in the response to stimulation. For example, the person might not react to a loud noise, but might orient to the crinkle of a candy wrapper or be fearful of a distant siren.)
2. Severe affect isolation. (Often there is a profound lack of interest in showing or accepting affection or being with others.)
3. Self-stimulation. (Often, they do very repetitive acts such as rocking their bodies when sitting, twirling around, flapping hands at the writs, or humming a set of three or four notes over and over again. Lights, spinning objects, closing doors, etc. may also hold their attention for long periods of time.)
4. Tantrums and self-mutilatory behavior. (The persons might sometimes bite themselves, hit themselves in the face, or attempt to scratch, bite or hit others.)
5. Echolalic speech. (Many of these persons are non-verbal, make simple sounds, or utter single words. The speech of those who do talk may simple echo the speech of other people. For example, when asked “What is your name?” the person might simple repeat “What is your name?” At other times, the echolalia might be delayed: the person might seemingly out of the blue repeat something they heard earlier, including items from TV commercials, etc.)
6. Behavior deficiencies. (Behavior development might be delayed and they might not show understanding of common dangers.)
Autism is perhaps the most puzzling of all developmental disabilities because of the untapped potential of the individuals who are autistic. Persons with autism may appear to have sensory impairments but, in reality, their senses may be so sharp that they may be focused on some everyday activities, but not others. Patience is above all the most important quality necessary to assist a person with autism.
The term seizure disorders, or epilepsy, is used to describe a variety of disorders of brain function characterized by recurrent seizures. Seizures are clusters of behaviors that occur in response to abnormal neurochemical activity in the brain. They typically have the effect of altering the individual’s level of consciousness while simultaneously resulting in certain characteristic motor problems. Between seizures, the brain functions normally. Seizures largely may be controlled with medications. Sometimes such large doses of mediation are needed that learning and behavior are adversely affected. Some medications cause drowsiness, nausea, weight gain, or thickening of the gums. There are three common types of epileptic seizures.
1. Tonic Clonic. This seizure is most obvious and serious when it occurs. It may also be known as a grand mal seizure. Muscles stiffen and the person loses consciousness resulting in a fall to the floor if standing. There is violent shaking of the whole body as muscles contract and relax. Saliva may be forced from the mouth and bladder and bowels may be emptied. After a few minutes, the contractions cease and the person goes to sleep or is conscious in a confused and drowsy state. The Epilepsy Foundation of America recommends the following procedures:
a) Ease the person to the floor and loosen snug clothing. Do not attempt to restrain the person. The seizure cannot be stopped so don’t try.
b) Remove hard, sharp, or hot objects from the area to protect the person from injuries.
c) Do not force anything between the person’s teeth. If the mouth is already open, place a soft object between the side teeth. Do not get your fingers between the teeth.
d) Turn the head to one side for release of saliva. Place something soft under the person’s head.
e) Let the person rest when he/she becomes conscious.
f) If the seizure is longer than a few minutes or if the person passes from one seizure to another without regaining consciousness, call for medial help. This is very rare, but requires immediate attention.
2. Absence. These are much less severe than grand mal seizures, but occur more often and are sometimes known as petit mal seizures. The person loses consciousness, generally for less than 30 seconds. Indications of the seizure might include a blank stare, a pale color, the drop of something held in the hand, the appearance of “daydreaming” or some such related response. These seizures might occur as many as 100 times each day for some persons. These are not violent shaking movements of the body and no special first aid is required.
3. Complex Partial. This type of seizure might appear as a brief period of inappropriate or purposeless activity such as lip smacking, aimless walking, or shouting, and may be known as a psychomotor seizure. The person appears conscious, but is not aware that he/she is even behaving this way. Usually these last only a few minutes, but have been known to go on for several hours. Dangerous objects should be kept out of the person’s way, but physical restraint is not recommended unless imminent danger to the person exists. Some people might actually respond to spoken directions during this type of seizure.
Absence and complex partial seizures might go unnoticed or unrecognized for quite some time. Observant persons with knowledge regarding the different types of seizures might recognize behaviors indicative of such seizure activity. With proper attention and medication prescribed by a physician, much seizure activity can be reduced or even eliminated. It is important to observe and record information about the seizures. Their frequency and topography is critical for personal assistants to observe and recognize, if a clinical record is to be kept. Information regarding seizures, medication and their reaction is to be shared with the R.N. supervisor and the family of the person that you are a personal assistant to.
This is a group of non-contagious diseases of muscles which are progressive (meaning that they generally become worse over time). At birth there are no apparent problems, but by the age of 4 or 5 there is a slowness or “clumsiness” in walking. Gradually, the child loses the ability to walk. Smaller muscles in the hands and fingers are the last to be affected. There is presently no known cure for MD and the disease is often fatal.
Children with MD may have difficulty getting to their feet after laying down or falling. Independence can be maintained for the longest period of time through regular physical therapy, exercise, and adaptive devices. Children with muscular dystrophy should not be lifted by their arms because limbs are easily dislocated due to the weakness of muscles which normally support the joints. Emotionally, it may be difficult for the child and family to cope with the gradual loss of physical abilities and the possibility of death related to the disease.
Also known as “cleft spine,” is a congenital (existing at birth) defect in the formation of the spinal cord and the overlying bones of the vertebrae. A section of the spinal cord and nerves which control muscles and sensations in the lower portion of the body fail to develop normally. Spina Bifida can range from mild, where there is no serious physical consequence, to severe, where the spinal cord and nerves protrude through an opening in the child’s back. In its severe form the child is at high right of paralysis and infection. A person with Spina Bifida might have complete control of the upper body, but have little or no control of the bowel and bladder due to the lack of feeling and muscle strength in the lower body.
Surgical techniques enable the spinal cord and nerves to be tucked back into the spinal column preferably within 24 hours of birth. Thus, persons with spina bifida can become quite independent. Some walk with the aid of braces, crutches, or walkers, and may use wheelchairs for long distances. Special help may be needed with dressing and toileting for some. Often, persons with Spina Bifida need to use a catheter, but can learn to regulate their own bowel movements.
There are numerous types of communication disorders and many possible cause. Some causes are organic, related to a physical problem such as cleft palate, absence of teeth, paralysis of muscles related to speech, enlarged adenoids, etc. These often occur along with other disabilities for example, cerebral palsy, hearing impairment, and mental retardation.
A person is considered to have a speech impairment if his/her speech deviates so greatly from accepted speaking patterns of other people that it:
draws unfavorable attention,
interferes with communication, or
causes the speaker to have difficulty in social relationships.
Speech impairments include: articulation disorders which result in the omission, substitution, distortion, or addition of speech sounds; voice disorders which affect the quality, loudness, or pitch of the voice; and fluency disorders which interrupt the smooth flow of speech with inappropriate pauses, hesitations, or repetitions; and delayed speech, when a person speaks like someone much younger. Delayed speech is a deficit in communication ability and is often associated with other maturational delays.
Language disorders are classified as “receptive” or “expressive” disorders. A receptive disorder interferes with the understanding of language, an expressive disorder interfere with the production of language (such as a limited vocabulary for the age of the person, confusion about the order of sounds or words, or incorrect use of tenses and plurals). A person may have one or both of these types of language disorders. Several factors might contribute to language disorders:
cognitive limitations or retardation,
environmental deprivation,
hearing impairments,
emotional impairments or behavior disorders, and
structural abnormalities of the speech mechanism..
Some severe language disorders may be caused by brain damage. One example is aphasia, the inability to formulate or retrieve and decode arbitrary symbols of language. Aphasia may be congenital (from birth) or occur as a result of a head injury or stroke.
A hearing disorder may be defined according to the degree of hearing loss. The degree of hearing loss is determined by assessing a person’s sensitivity to sound intensity and sound frequency. Sound intensity (loudness) is measured in decibel units. Sound frequency (pitch) is measured in hertz units.
Deafness and hard-of-hearing are commonly used terms to define hearing disorders. A person who is deaf typically has profound or total loss of auditory sensitivity and little, if any, auditory perception. The primary information input is through vision, speech is not understood through the ear. A person who is hard-of-hearing (partial hearing) generally has residual hearing through the use of a hearing aid that sufficiently processes language through the use of a hearing aid that sufficiently processes language through the ear.
A hearing disorder may be congenital or acquired during a person’s life. Age of onset is critical in determining the type and extent of intervention necessary to minimize the effect of the hearing disorder. Prelingual disorders are identified as occurring prior to the age of two years, or about the time of speech development. A hearing loss that occurs before language has developed is more problematic especially in the areas of communication and social adaptation. Postlingual disorders occur at any age following speech development.
The anatomical site of loss is a critical factor in defining a hearing disorder. Conductive hearing losses result from poor conduction of sound along passages leading to the inner ear. The effect of conductive hearing loss is the reduction or loss of loudness. A conductive loss can be offset by amplification (hearing aids) and medical intervention. Sensorineural hearing losses are the result of an abnormal sense or a damaged auditory nerve. Sound is distorted with a sensory hearing loss, thus affecting the clarity of human speech. Sensorineural losses cannot be treated adequately through medical intervention. A sensorineural loss is generally more severe than a conductive loss, and it is permanent. Mixed hearing loses are a combination of conductive and sensorineural problems.
There is a distinction between medical-legal and educational definitions of blindness. Medical-legal definitions are primarily concerned with the loss of visual acuity and the central field of vision. Visual acuity is indicted by the use of an index that refers to the distance at which an object can be recognized. A person is considered blind whose visual acuity does not exceed 20/200 in the better eye fitted with corrective lenses. A person is considered to be blind if the central field of vision is limited at its widest angle to 20 degrees.
Educational definitions of blindness focus primarily on the individual’s ability to use vision as an avenue for learning. Children who are unable to use their sight and rely on other senses, such as hearing and touch, are described as educationally blind.
These is a distinction between individuals who are blind and those who are partially sighted. A person who is partially sighted can still use vision as a primary source for learning. This person has a visual acuity greater than 20/200, but not greater than 20/70 in the better eye after correction.
The field of education distinguishes between blind and partially sighted to determine the level and extent of support services required by a student. Partially sighted students are able to use vision as a primary source of learning. These students are encouraged to make maximum use of residual vision.
The following descriptors have been proposed to refine the terminology and group various levels of visual problems. A profound visual disability is a disorder the performance of the most gross visual tasks may be difficult, and vision is not used for detailed tasks. A severe visual disability is one in which additional time and energy are needed to perform visual tasks. The performance level may be less accurate. A moderate visual disability is a disorder in which visual tasks may be performed with the use of special aids and lights.
Severe emotional disturbance is a condition exhibiting one or more of the following characteristics over a long period of time and to marked degree. This condition adversely affects community and school acceptance and/or performance. For example, a severe emotional disturbance results in:
1. an inability to learn unexplained by intellectual, sensory, or health factors;
2. an inability to build or maintain satisfactory relationships with peers and/or teachers;
3. inappropriate types of behavior or feelings under normal circumstances;
4. a general and pervasive mood of unhappiness or depression; and
5. a tendency to develop physical symptoms or fears associated with person and community problems.
The judgment of professionals carries a lot of weight when determining if someone is seriously emotionally disturbed. Regardless of the definition, most agree that the person’s behavior must differ extremely over time (chronically) from current social or cultural norms to be considered as severe emotional disturbance. It takes a great deal of patience to assist person with severe emotional disorders. It is imperative that personal assistants learn to separate the emotional disturbance from the personality of the individual, deal with the behaviors–not the personality and be objective.
Go to the Attention Deficit Disorder Association website (http://www.add.org/content/abc1.htm) to learn the basics of this disorder.
Look at the “What is CF” section of the Cystic Fibrosis Foundation Website. Source: http://www.cff.org/.
Check out the National Down Syndrome Society website at www.ndss.org
Read sections Cause and Diagnosis to learn about this genetic disorder.
Look at the International Dyslexia Association Website to learn about this learning disability.
Specific learning disability is a disorder in one or more of the basic psychological process involved in understanding or using language, spoken or written, that manifests itself in an imperfect ability to listen, think, speak, read, write, spell, or perform mathematical calculations. The term includes such conditions as perceptual handicaps, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not include children who have learning problems which are primarily the result of visual, or hearing, or motor handicaps; mental retardation; or environmental, cultural, or economic disadvantages (from section 5(b) of P.L. 94-142).
The term is not meant to be used for those who are having minor or temporary difficulties in learning. It is reserved for those who have a severe discrepancy between ability (overall intelligence) and achievement. These are often measured with standardized tests (IQ & achievement tests) as well as other methods. A variety of assessments must be included in any recommendation for special services. The exact definition of a “severe discrepancy” is still argued. Lack of a specific definition of severe discrepancy from the federal level has forced state and local educators to find some means of objectively identifying those who are to receive special services in education.
Learning disabilities are most relevant for school-age people. The term is used only so those persons having prolonged difficulty in learning can get specialized help. After the school years, it may only be relevant for others to know the person may need to take special approaches in learning things. Others do not need to know the person was previously labeled learning disabled. Special approaches for learning might include:
1. precise definitions of the behavior to be taught;
2. tasks analysis to break skills down into smaller units or subs kills so the learner has to master only one part at a time;
3. direct teaching methods that require the new skills to be practiced many times; and
4. direct daily measurements to monitor progress and evaluate the instruction.
Many believe that the reference to dyslexia, minimal brain dysfunction, perceptual handicaps, and developmental aphasia, which have historically been difficult to define, only add confusion to the definition of learning disabilities.
Within the federal and state definitions of “developmental disability” remain a certain amount of flexibility in determining who will receive services. The judgment of what constitutes a “substantial limit” of functioning for an individual, for example, is usually based on various assessments and the professional opinions of person connected with the field of developmental disabilities. As long as a disability becomes evident before a person turns 22 years of age, and that person can be shown to have substantial limits in three of the seven areas outlined in the definitions, and the condition is not temporary, then it is likely the person will receive services. The more disabilities a person has the more intensive the services.
We should not be quick to label individuals as developmentally disabled, retarded, etc., because, as you have seen, these are merely titles for definitions used to determine which group of people are eligible for services allocated by government entities. These titles do not describe individual characteristics. Often they create a limited view of a person’s worth and abilities, and negatively affect their human dignity. Remember, they are people first.