SE C T I O N F I V E - W O R K I N G W I T H SE N I O RS W H O H A V E D ISA B I L I T I ES Introduction
The Horld Health ZrganiPation defines a disaBility as “any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human Being”. This laBel made it easy for disaBled people to Be stereotyped as people who are ill, powerless and dependent on others. To counteract this connotation, Disabled People International redefined the term to mean “the loss or limitation of opportunities that prevents people who have impairments from taking part in the mainstream life of the community on any equal level with others due to physical and social Barriers”. It is important to disaBled individuals that they are seen as having an “impairment”, instead of Being disaBled and that emphasis is placed on what they can do, as opposed to what they cannot do. Home Care Assistants need to be aware that people with disabilities prefer the Disabled People International:s definition, as it will make care and interactions Between them and their clients flow more smoothly. Home Care Assistants also need to be aware that disabled clients want to be acknowledged for who they are as opposed to what condition they have. This section will familiarize the Home Care Assistant with the more common types of “disaBilities” and provide some guidelines on how to interact with people who have them. Disability C ategories The main disability categories are: Physical Disability, wherein an individual:s moBility or deLterity is affected. Psychiatric Disability (Mental Illness), wherein an individual:s carrying out of life activities, such as learning, thinking, communicating, and sleeping are hindered by mental illness. Intellectual (L earning) Disability, wherein individuals have a reduced ability to learn tasks or process information. Neurological Disability, wherein there is a loss of physical and/or mental functions as a result of damage to the nervous system. Sensory Disability, wherein there is an impairment in hearing and/or vision.
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Physical Disabilities Physical disabilities can be caused by birth defects, injuries or illness. They can be temporary conditions or long-term conditions. Usually, they result in a loss of one or more functions and may or may not
cause people with disabilities to be dependent on others to meet their basic needs. When help is needed, often it is the Home Care Assistant who provides it. Consequently, Home Care Assistants should know what the more common types of physical disabilities are:
Physical Disability Amputation Blindness Cerebral Palsy Communicative Disorder Congenital Disability Cystic Fibrosis Deafness Epilepsy Dystrophy Hemiplagia Paraplegia Quadraplegia Spasticity Polio (Infantile Paralysis)
Description A part of the body is missing as a result of injury or surgery (e.g. arm, leg, hand) There is total loss of vision. This term refers to a number of conditions which were caused by damage to the nervous system, which frequently occurs as a result of trauma at birth. Note: Do not assume that because there is physical damage, there will also be mental damage. This term refers to a number of conditions, which result in speech, hearing and learning disaBilities. They impact on an individual:s aBility to communicate. This refers to a disability that existed at birth. This is an inherited disease, which primarily affects the gastrointestinal and pulmonary systems and resembles Chronic Obstructive Lung Disease. This refers to total loss of hearing. This term refers to any number of disorders that are caused by disturbances in the electrical rhythms of the central nervous system. They result in seizures (involuntary muscle spasms). This disease refers to a number of diseases which cause a weakness and degeneration of the muscles which control movement. (e.g. Muscular Dystrophy) This is a partial or total paralysis of one side of the body, which is caused by brain damage as a result of disease, trauma or stroke. This is a partial or total paralysis of the lower part of the body, which causes a loss of the function in both legs. This is a paralysis of the body, which results in total or partial loss of function in both arms and both legs This refers to the sudden and involuntary spasms of the abdominal muscles. Polio is caused by a virus which enters the nerves of the brain & spinal cord causing them to stop working normally. This results in the affected nerves not functioning, which can cause muscles in the arms, legs, chest, diaphragm & throat to become weak or paralyzed.
Psychiatric Disabilities (M ental Illness) Psychiatric Disabilities is a term used when mental illness significantly interferes with the performance of major life activities such as learning, thinking, communicating and sleeping.
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A Psychiatric Disability can develop at any age. The type, intensity and duration of symptoms vary from person to person and do not always follow a regular pattern. While they can be controlled effectively with medication and/or psychotherapy or may even go into remission, some people still have reoccurrences which require treatment. Consequently, varying degrees of support will be required, depending on the individual. Home Care Assistants may be required to provide some of the support needed. Mental illness is a term that describes a broad range of mental and emotional conditions. The most common forms of mental illness are: Anxiety Disorder is a term used to describe a variety of disorders which are characterized by severe fear or anxiety associated with particular objects and situations. e.g.: o
Post Traumatic Stress Disorder after exposure to a terrifying event or ordeal in which grave physical harm occurred or was threatened.
o
Obsessive Compulsive Disorder is characterized by obsessive thoughts and compulsive actions, such as cleaning, checking, counting or hoarding.
Depressive Disorder is a term used to describe a variety of disorders in which there are intense feelings of loss, sadness, hopelessness, failure and rejection. e.g.: o
Major Depression (Clinical Depression) is characterized by an inability to concentrate, lack of sleep, loss of appetite, feelings of extreme sadness, guilt, helplessness and hopelessness, inability to experience pleasure and thoughts of death.
o
Seasonal Affective Disorder occurs usually during the late fall and winter when there are decreasing amounts of light and colder temperatures.
Schizophrenia is a disorder usually characterized by withdrawal from reality, illogical patterns of thinking, delusion and hallucinations. It is accompanied by other emotional, behavioral, or intellectual disturbances. Bipolar Disorder (formerly called Manic Depression) is a disorder marked by alternating episodes of intense enthusiasm, interest or desire and episodes of extreme sadness, hopelessness, failure or rejection.
Intellectual (L earning) Disabilities Intellectual (Learning) Disabilities are disabilities characterized by cognitive (thinking), emotional, or physical impairments, which result in a reduced capacity to learn tasks or process information. They usually appear in infancy or childhood and result in a failure/delay to progress through the normal developmental stages of childhood.
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These disabilities may be caused by physical damage, lead poisoning or be the result of medical conditions such as brain inflammation, metabolism disorders, brain tumors or difficulties experienced during pregnancy (e.g. German Measles). Neurological Disabilities Neurological disabilities are associated with damage to the nervous system that results in the loss of some physical andGor mental functions. This may affect an individual:s aBility to move, to manipulate things, to express their feelings or their behavior. Sensory Disabilities Sensory disabilities refer to disabilities that occur as a result of hearing or sight impairment. B rain Injury Disabilities Disabilities, resulting from brain injuries, are the most widely known of the neurological disabilities. They are caused by injuries to the head or to the brain.(e.g. car accidents). Affects to the body depend on what part of the brain was damaged. Therefore, individual responses vary considerably. Note: It is seldom true that people with brain injuries also have intellectual true that people with brain injuries also have intellectual disability. Acquired and Developmental Disabilities Acquired and Developmental Disabilities result from environmental factors. They can cause limitations in the ability to perform life activities (e.g. self-care, communication, mobility, self-direction, independent living & handling of financial affairs). Acquired Disabilities are physical or mental disabilities that can occur at any time as a result of injury or specific disease e.g.: o o
Physical Disability can result from Multiple Sclerosis, AIDS, & Spinal Cord Injury. Mental DisaBility can result from AlPheimer:s Disease.
Developmental Disabilities are physical or mental disabilities that become evident before the age of 22 and may continue indefinitely. These disabilities can be inherited, be the result of trauma or be caused by illness. Examples include: o o
Physical Disabilities -- can result from Cerebral Palsy, Epilepsy, head injury. Mental Disabilities -- can result from Attention Deficit Disorder, Dyslexia, Mental Retardation, and Autism.
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E tiquette For Interacting W ith People W ho H ave Disabilities Etiquette refers to the rules of social behavior and good manners. While most people are familiar with the guidelines for general etiquette requirements, many do not know what etiquettes and courtesies are recommended for dealing specifically with disabled individuals. It is important that Home Care Assistants not only know what these common courtesies are but, more importantly, know how to apply them. Following are some suggestions for interactions with disabled people : Don:t assume that an impairment doesn:t eList ;ust Because it is not visible. Treat them in the same manner you would treat any other individual. Don:t reference them as a third person. Speak to them directly instead of asking someone else a question that should be directed to them. (E.g. Does he want his sweater on?) Don:t use Behavior patterns that you would use for a child. Ie.g. Don:t pat them on the head, as if to say “good Boy�N. Don:t make assumptions that they can or can:t do something. Xind out from them what they can do. (You may be surprised.) Ask them if they need help instead of jumping right in to provide it. When assisting them, let them tell you how they would like you to help. (They usually know best.) When speaking to them, face them directly and make eye contact. Shake their hand, even if it is an artificial limb. (Let the person with the disability decide on the type and strength of handshake.) Hhen speech impediments eList, let them know if you don:t understand what is Being said or offer them paper to write on. A dditional T hings to K now A bout Interacting W ith People W ho H ave Disabilities When interacting with people who use a wheelchair: Either get a chair to sit on or crouch down. (Having to look straight up at you, may cause discomfort in their neck.) Don:t lean on the wheelchair. IIt is part of their body space.) When arranging a get together away from their home, be sure the chosen location is wheelchair accessible; e.g.:
o o o o o
Suitable restrooms are available. Convenient parking is available. There is a ramp for safe access. Doorways and halls are wide enough to accommodate a wheelchair. Be aware of structural barriers in restaurants, theatres and open spaces.
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When interacting with people who have a psychiatric disability: Don:t tell anyone that the person has a psychiatric disaBility, unless permission has been given to do so. Hhen a person mentions their disaBility don:t ask them questions aBout it. Any questions should pertain to how their needs can be accommodated. Be patient when talking to them, as some become agitated and cannot remain focused. When they have a companion with them, avoid speaking through the companion. i.e. Speak directly to the person with the disability.
When interacting with people who have a developmental (learning) disability: Use simple language and uncomplicated sentences. Have them repeat back what has just been said. If they are having problems assimilating oral or written information, use pictures or other types of physical demonstration. Be aware that some are very sensitive about the negative attitudes of others.
A ppropriate and Inappropriate Word Usage with Disabilities People with disabilities are sensitive to certain words that are often innocently used. The following outlines some words to avoid and provides some suggestions on appropriate substitutions.
Inappropriate Words victim
cripple
invalid
A ppropriate Words
Inappropriate Words
A ppropriate Words
person who has (whatever) person who experienced (whatever) person with a disability
patient
person (most people who have disabilities are not sick)
sympathy
person who has a disability caused by (whatever) no need to label
confined to wheelchair
no substitutions (most people with disabilities would prefer to be accepted for their abilities) uses a wheelchair
normal
afflicted with
person who has (whatever)
unfortunate, pitiful, poor, deaf & dumb, mute, deformed, blind as a bat homebound employment
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No substitutions (words are judgmental & stereotyping)
works at home telecommunicates
How to A ddress or Describe People with Disabilities In the United States, the disability rights movement has been in effect since the 19]0:s. It advocates that there are certain words which are appropriate and certain words which are not appropriate to use when talking or writing about people with disabilities. This is essential information for Home Care Assistants. Following are some of the rules of the disability rights movement: When referring to the disability, put the person first, not their disability. Emphasize people not labels. Do not refer to the disability unless it is relevant. Do not focus on the disability. Wse “disaBility” instead of “handicap”. Do not portray successful people with disabilities as superhuman, special or heroes. Do not patronize (act superior towards) or give excessive praise or attention. Do not sensationalize a disability. Do not label people as part of a disability group. Do not use generic labels for disability groups such as “the retarded”. Understand that although a disease may have caused a disability, the disability itself is not a disease and is not contagious. Do not use “normal” to descriBe people who do not have disaBilities. KmphasiPe people:s aBilities, not limitations. Recognize and show people with disabilities as active participants of society. Reminder:
Be sure to put people Before the disaBility. K.g. Don:t say “disaBled people”. Instead, say “people with disaBilities”.
Summary There are several types of disabilities with various causes, symptoms and treatments. While they have similar challenges and problems to face, each type of disability also has its own specific implications. Being disabled does not necessarily mean being ill, as many individuals who have disabilities are healthy. It is important to people with disabilities that the emphasis is placed on them, as opposed to on the disability. They want to be acknowledged for their abilities and talents and are sensitive to attitudes and inappropriate word choices that can seem condescending to them. There are established etiquette practices in place for interacting with people who have disabilities, which have been reinforced through human rights movements. It is essential that Home Care Assistants be familiar with the different types of disabilities, the challenges faced and the acceptable ways to interact with people who have disabilities. This will enable them to provide the best support they can, thus enhancing the lives of their clients and their own personal satisfaction levels.
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