2 m-care: disability awareness

Mobile Training for Home and Health Caregiver For People with Disabilities and

Older People

539913-LLP-1-2013-1-TR-LEONARDO-LMP

Module: Disability Awareness


Unit 1 • Impairment and Disability

– Medical model

– Social model

– Bio-psychosocial model


What is Impairment? Impairment - any loss or abnormality of psychological, physiological or anatomical structure or function.

World Health Organisation (1980), A manual relating to the consequences of disease. Geneva, World Health Organisation

The photo is owned by PhoenixKM


What is Disability?

Disability - Any restriction or lack, resulting from an impairment, of ability to perform any activity in the manner or within the range considered normal for a human being.

World Health Organisation (1980), A manual relating to the consequences of disease. Geneva, World Health Organisation



What is Disability?

There are three distinct models of disability:

• the medical model

• the social model

• the bio-psychosocial model



• The medical model

– disability is understood as an individual problem.

– if somebody has an impairment – for example – inability to see, walk or hear, it is understood as their medical problem.

Photo by Teerapun, http://www.freedigitalphotos.net/


• The medical model of disability also affects the way people with disabilities think about themselves.

• People with disabilities can also be led to believe that their impairments automatically prevent them from taking part in social activities.



MEDICAL MODEL Impairment – your problem!

Disability – your problem!



Medical – This model implies that the person is the problem

Social – this model stresses that society is the problem

Photo by stockimages, http://www.freedigitalphotos.net/


• The social model

– Disability is seen primarily a result of society’s response to people with disabilities.

– Experience of the health and welfare system made disabled people feel socially isolated.

Photo by Praisaeng, http://www.freedigitalphotos.net/


Through the social model, disability is understood as an unequal relationship within a society in which the needs of people with disabilities are often given little or no consideration.

Photo by David Castillo Dominici, http://www.freedigitalphotos.net/


People with disabilities are disabled by the fact that they are excluded from participation within the mainstream of society as a result of physical, organisational and attitudinal barriers.

Photo by Renjith Krishnan, http://www.freedigitalphotos.net/


These barriers prevent them from gaining equal access to information, education, employment, public transport, housing and social/recreational opportunities.



SOCIAL MODEL Impairment – is part of me. Disability – is society’s problem.

Society needs to change, not disabled people.



• The bio-psychosocial model

– This model sees disability as interaction between a person’s health condition and the environment they live in (e.g. ICF model).

– It advocates that both the medical and social models have advantages, but neither is sufficient on its own to explain the complex nature of one’s health.

BUT: be aware that current qualifying standards for benefits are primarily medical!



Unit 2 • Anti-discrimination & legislation

– UN Convention on the Rights of Persons with Disabilities

– European Disability Strategy 2010-2020

– National legislation



• Anti-discrimination legislation, equal-opportunity policies and programmes of positive action exist throughout Europe and more widely.

• They support people with disabilities to take part in a whole range of social activities which non-disabled people access and take for granted.

Photo by Stuart Miles, http://www.freedigitalphotos.net/


• UN Convention on the Rights of Persons with Disabilities

– Human Rights model of disability

– “Disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.”

– Key elements:

• Antidiscrimination legislation

• Mainstreaming

• Accessibility

• Civil society

http://www.un.org/disabilities/default.asp?navid=13&pid=150




• Disability Strategy 2010-2020 – Comprehensive framework committing the Commission to empower

people with disabilities to enjoy their full rights, and to remove everyday barriers.

– Areas for action: • Accessibility – Ensure accessibility to goods, services -including public services- and

assistive devices for people with disabilities. • Participation - able to fully exercise their fundamental rights as regards European

citizenship • Equality - active policies to promote equality at European level and in Member States • Employment - number of disabled workers in the traditional labour market to be

increased • Education and training - benefit from an accessible education system and lifelong learning

programmes • Social protection - compensate for the income inequalities, risks of poverty and social

exclusio • Health - benefit from equality of access to services and health facilities, including mental

health facilities • External action - promote the rights of people with disabilities at international level

– Supports and supplements national activities for implementing accessibility and removing existing barriers, and improving the availability and choice of assistive technologies

http://eur-lex.europa.eu/legal-content/en/ALL/;ELX_SESSIONID=pk9fJzrT6714RCGn6yZymPXcDyTYn4fFJR1py4f7TmJJsGSS6g1h!1545075?uri=CELEX:52010DC0636





National legislation

• Belgium – Act of 10 May 2007 pertaining to fight against certain forms of

discrimination (Federal General Anti-Discrimination Act). – Decree of the Flemish Community of Belgium concerning balanced

participation in the labour market.

• Bulgaria – Protection Against Discrimination Act, 2004

• Germany – General Law on Equal Treatment of 2006 (AGG). – Social Code IX. – Law on Promoting the Equality of the Disabled.

• Greece – Law n. 3304/2005 Implementation of the Principle of equal treatment

regardless of racial or ethnic origin, religion or belief, disability, age or sexual orientation.


National legislation

• Turkey – 2011-2013 Care Services Strategy and Action Plan – 2011-2023 National Mental Health Action Plan – Law on Persons with Disabilities (Law no. 5378): is the first comprehensive law on disability

related issues, such as education, vocational training, employment, prohibition of discrimination, reasonable accommodation etc.

– Labour Law (Law no.4857): provides for an employment quota for persons with disabilities. – Turkish Civil Law (Law no. 4721): provides restrictions on legal capacity of persons with

intellectual disabilities as well as persons suffering from mental disorders. – Turkish Criminal Law (Law no. 5237): prohibits discrimination based on the ground of

disability. – Law on Civil Servants (Law no. 657): contains provisions on the employment of persons with

disabilities as civil servants. – Law on Social Services (Law no. 2828): establishes the types of social services (including

protection of persons with disabilities) to be provided to persons with disabilities. – Law on Pension for Turkish Citizens over 65, Needy and Homeless (Law no. 2022): prescribes a

means-tested pension for persons with disabilities in need. – Statutory Decree on Special Education (No. 573): establishes the principles of special

education and how those principles shall be implemented. – National Accessibility Strategy Action Plan (2010-2011). – Action Plan for the Employment of Persons with Disabilities (2005-2010).


Most people will experience disability at some point in their lives through illness, accident or aging.



• For example

– the lack of information available in large print can be a disabling barrier to many older people as their eyesight changes over time and they are no longer able to read standard-size print.

Photo by Ambro, http://www.freedigitalphotos.net/


Unit 3 • Types of disabilities

– People with mobility impairments

• What is it?

• Some examples – Muscular Dystrophy

– Cerebral Palsy

– Paralysis

– Hemiplegia

– Paraplegia

– Quadriplegia

– Multiple Sclerosis

– Polio

• Barriers of people with mobility impairments



• Mobility impairment can be caused by a range of conditions that can be temporary or permanent.

• The condition may affect some parts of the body or the whole of it.

• The effects can change from day to day; they can remain the same or get progressively worse over time.



• Characteristics:

– Limited dexterity in upper and/or lower limbs;

– Difficulties in moving (in wheelchair, using crutches, cane or other aids);

– Need constant assistance by other person.



Remember!

• Leaning on or hanging on to a person's wheelchair is generally considered annoying.

– The chair is part of the personal body space of the person who uses it.



• Muscular Dystrophy involves deterioration and wasting of muscle fibres.


• Cerebral Palsy relates to bad coordination and involuntary movements of the muscles.

http://forkneedlepen.files.wordpress.com/2013/03/typesofcp.gif


• Paralysis means a loss of feeling (sensory loss) in certain parts of the body and being unable to move these parts.



• Hemiplegia is the paralysis of one side of the body as a result of a stroke or brain injury.

– With hemiplegia, there may be an impairment of intellect, personality, speech or the senses.

Photo by stockimages, http://www.freedigitalphotos.net/


• Paraplegia - there is a loss of sensation in paralysed limbs as well as other effects such as muscle spasms, pain and loss of bowel and bladder control.



• Quadriplegia - This will cause impairment to the hands and arms in addition to the effects of paraplegia.

http://www.epainassist.com/images/quadriplegia.jpg


• Multiple Sclerosis is a disorder that attacks the brain and spinal cord and causes deterioration of the nerve tissue.

– Usually associated with paralysis, muscle spasms, disorders of speech, and tremors of the hand.

• Polio causes a high fever and paralysis of different muscles.



Barriers…

Photo by ddpavumba, http://www.freedigitalphotos.net/


Mobility impaired people may have the following:

• Difficulties with co-ordination and movement;

• Difficulties with endurance and stamina;

• They may find routine tasks such as driving, household chores, cooking and grooming difficult and/or tiring;

• Fatigue.



• If their hands or arms are affected they may:

– Have difficulty with handwriting;

– Be unable to write using a pen/pencil;

– Have a slow writing speed;

– Have difficulty turning pages;

– Have difficulty using a standard keyboard or mouse

– Have difficulty using equipment found in conference rooms;

– Have difficulty filing or storing documents


• Physical accessibility – Inaccessible or not enough accessible

passageways and stairs – Too narrow elevators, entrances and

corridors – Too heavy doors – Rolling doors – Slippery floors or covered with thick

carpet – Lack or difficult access to objects or

buttons placed on inappropriate level – Not sufficient space for moving for

person in wheelchair or using other mobility aids

– Lack of equipment facilitating independency of person in the toilet or bathroom (e.g. rails, handles).




– People who are blind or partially-sighted

• What is it?

• Some examples – Total blindness

– Central vision loss

– Peripheral vision loss

– Blurred vision

– Colour-blindness

– Night-blindness

• Barriers of people who are blind or partially-sighted


• Everyone who has a visual impairment is different – people with visual impairments’ experience of being blind / partially sighted is unique to them.

• The impact of this disability depends on the kind of vision loss and how severe it is.



• Some of your clients may rely on a guide dog or use a white cane to help them get around

• Others may have enough vision to get around on their own.



• Total blindness - Blindness is the condition of lacking visual perception due to physiological or neurological factors.

• Central vision loss – e.g. Macular degeneration is a medical condition usually of older adults which results in a loss of vision in the centre of the visual field (the macula) because of damage to the retina.

• Peripheral vision loss - so called tunnel vision, retain clear central vision. They might detect movement and objects that assist with one's orientation.

http://en.wikipedia.org/wiki/Macula_of_retina

http://en.wikipedia.org/wiki/Retina


• Blurred vision - causes both near and far to appear to be out of focus.

• Colour-blindness is the inability to perceive differences between some of the colours that others can distinguish.

• Night-blindness - results in inability to see outside at night under starlight or moonlight, or in dimly lighted interior areas such as movie theatres or restaurants.


Barriers…



• Visual information (marking, directions, gestures, mime, etc.)

• Printed materials (leaflets, registration form, information brochures, menus, etc.)

• Information related to emergency situations (evacuation ways signs, printed instructions in case of emergency)

• Orientation in new surrounding without guidelines

• Independent usage of new devices (e.g. elevator without special marking or other adjustments)

• Recognition of objects of the same shape (e.g. the same containers with cosmetics in the bathroom)

• Finding objects because the location has been changed


How to act as a PCG?

• Identify yourself • Offer assistance, but don’t

insist (do not grab someone by the arm)

• Service animals are not pets, they are working

• Identify for the person with vision impairments the arrangements (shape, size, window, doors) and their contents (furniture, people




– People who are deaf or hard of hearing

• What?

• Barriers of people who are deaf or hard of hearing



• Hearing loss, deafness, hard of hearing

– partial or total inability to hear

– if people were born deaf, they may not have well developed speech

– might have problems with sequencing, grammar etc.

• How do they communicate?

– Hearing aids may be used to amplify sounds (hearing aid is just the device and has a lot of limitations)

– Sign language may be a mother tongue

– Lip reading: when speaking, ensure person can see the person who is talking


• Sign language (SL)

– Human speech is very different from SL which is based on hand movement, gestures and facial expressions.

– If the client communicates only through SL s/he may use the services of a SL interpreter.



Barriers…



How to act as a PCG? • Find quiet place to talk (no

computers, telephone, fax, street noises)

• Attract visual attention before initiating conversation

• Speak directly to the person • Lip-reading: rare and tiring,

keep your mouth and face visible

• Shouting does not help




– Combined/multiple disabilities

• What?

• Types – Multiple (deaf-blindness)



A person who has several and combined disabilities, for example

• sensory disability associated with a motor disability

• mobility and learning impairments (e.g. cerebral palsy, down syndrome)

• deaf-blindness is the condition of little or no useful sight and little or no useful hearing



Example: Deaf-blindness

Ways of communication

• Use of residual hearing

(speaking clearly, hearing aids)

or sight (writing with large

print)

• Tactile signing or sign language

(someone who grew up deaf

and experienced vision loss

later in life is likely to use sign

language)

• Interpreting services




– People with speech impairment

• What?

• Barriers



• People with significant articulation problems, such as extreme stammering, spluttering or strong nasal speaking, or slurred speech

Photo by cooldesign, http://www.freedigitalphotos.net/


• Causes

– slurred speech: they may have suffered an injury or stroke

– lack of control over their facial muscles: they may have a medical condition such as cerebral palsy



Barriers…



• Difficulties with communication in situations requiring fast reactions (i.e. when ordering food in a shop).

• Sometimes even reluctance to any verbal communication – If the person has a stutter, there are some situations

that make it worse, for example, speaking in front of a group or talking on the telephone.

• They may have problems expressing their thoughts through speech due to dysphasia (a partial or complete impairment of the ability to communicate resulting from brain injury).


• Troubles with saying what they want to say correctly and consistently. – If the client has an articulation disorder (like Mr.

Bean’s character) it may affect how others understand what s/he is saying.

– Examples include substituting a "w" for an "r" ("wabbit" for "rabbit"), omitting sounds ("cool" for "school"), or adding sounds to words ("pinanio" for "piano").

• They find longer or more complicated words harder to say than short or simple words.

• They may also tend to make inconsistent mistakes when speaking.



– Intellectual (learning) disability

• What?

• Barriers

The photo is owned by http://www.nfcacares.org/who_are_family_caregivers

http://www.nfcacares.org/who_are_family_caregivers/


• Everyone who has a learning disability is different.

• There is a very wide variety of abilities and therefore a very wide range of learning disabilities.



People with learning difficulties may have: • Lower intellectual abilities • Troubles in perception processes, concentration, memory

and reflection • Problems with communication, cooperation with others,

etc. • They might find it hard to

– understand what is being said – interact with other people – understand through reading or watching – understand some information: numbers, geometric figures,

calculations and maps – remember things (poor memory) – talk or write – plan and manage their time (knowing what to do first or

knowing what to do next)


Barriers…



• Problems with understanding of complex information and statements

• Lack of understanding of abstract concepts

• Troubles with understanding complicated text

• Problems with full understanding of the value of daily concepts such as financial transactions





– Alzheimer

• What?

• Side effects




• Alzheimer

– It can occur among middle or older aged

people, due to general degeneration of the

brain.

– It causes a steady loss of memory, speech,

thinking, and carrying out of daily activities.

– Symptoms:

• Memory loss

• Confused about time and place

• Changes in personality and mood

• Trouble speaking and accomplishing tasks


7 stages of Alzheimer

• No impairment

• Very mild cognitive decline

• Mild cognitive decline

• Moderate cognitive decline

• Moderately severe cognitive decline

• Severe cognitive decline

• Very severe cognitive decline



Side effects

• Nausea;

• Vomiting;

• Loss of appetite;

• Headache;

• Confusion;

• Constipation.


References:

• Caregiver's Handbook: A Complete Guide to Home Health Care, DK Publishing

• Caregiver's Manual, The. Williams, Gene B. and Kay, Patie. Citadel Press

• Comfort of Home, The: An Illustrated Step-by-Step Guide for Caregivers. Meyer, Maria M. with Derr, Paula. CareTrust Publications

• Dying at Home: A Family Guide to Caregiving. Sankar, Andrea. New York: Johns Hopkins University Press

• Helping Yourself Help Others: A Book for Caregivers. Carter, Rosalynn. Random House

• World Health Organisation (1980), A manual relating to the consequences of disease. Geneva, World Health Organisation