**Appendix 6: Interviewer Instructions**

## Background

The test of the Washington Group question set will require interviewers
to go in person to people to interview them about their experiences.
These people have already agreed (provisionally) to participate in the
survey. This interview will cover the types of things they may have
difficulties in doing namely seeing, hearing, walking, remembering and
concentrating, self-care, and communication.

## Things to ponder in order to ensure a good survey

It should be emphasised that confidentiality is a priority. That
interviewer is not to repeat information to anyone about information
obtained from the respondent.

Interviewer should make reference to whatever publicity given to the
survey so that respondent realises that survey is authentic.

Interviewer should read questions as printed.

Interviewer should follow procedures for getting all survey documents
back to head office.

## 

**Coordination with the head office**

Countries will need to develop their own country-specific procedures for
returning completed questionnaires and insuring the accuracy of data
entry.

## 

## Administering the survey

Ideally, the interview will be completed with the respondent directly.
Directly interviewing the respondent is important. It shows the person
respect and allows them to speak for themselves. In many instances,
people with disabilities will not have been shown this respect.

In some cases, we may not be able to interview the person directly, such
as where sign language would be needed or where the person has a severe
intellectual disability, or in the case of young children. In these
cases, the person should be interviewed in the presence of an
interpreter or facilitator (or parent/guardian, in the case of children
under 16). The form of the interview will be recorded at the end of the
questionnaire:

-   A direct personal interview is one where the respondent participates
    directly and no interpretation or facilitation is needed.

-   An interpreted interview is one where someone interprets the
    questions to the respondent and interprets the responses back to
    you. The interpreter is simply an intermediary, helping you to
    communicate with the respondent.

-   A facilitated interview is one where someone else helps the
    respondent understand the questions and even answers some of the
    questions on their behalf.

-   A proxy interview is one where someone else completes the
    questionnaire for the respondent because he or she is unable to do
    so (e.g. a young child or a person with a severe intellectual
    difficulty).

## Good Practice in Interviewing People with Disabilities

Outlined below are some observations on the interviewing of persons with
a disability or difficulty.

1.  Good Practice in Interviewing Persons with a Disability

2.  What is Disability

3.  Informed Consent

4.  Meeting People With Disabilities

5.  Meeting People with Hearing Disabilities

6.  Working with People with Hearing Disabilities

7.  Meeting People with Physical Disabilities

8.  Working with People with Physical Disabilities

9.  Meeting People Who Are Blind or Partially Sighted

10. Working with People Who Are Blind or Partially Sighted

11. Meeting People with Speech and Language Disabilities

12. Working with People with Speech and Language Disabilities

13. Meeting People with Specific Learning Disabilities

14. Working with People with Specific Learning Disabilities

15. Meeting People with an Intellectual Disability (General Learning
    Disability)

16. Working with People with an Intellectual Disability (General
    Learning Disability)

17. Meeting People with Mental Health Disabilities

18. Working with People with Mental Health Disabilities

19. Meeting People with Hidden Disabilities

20. Working with People with Hidden Disabilities

**[Good Practice in Interviewing People with Disabilities]{.underline}**

This Section is intended to widen understanding of disability. It
outlines general points on communicating with people with disabilities
and provides information in dealing with general issues that are
pertinent to people with different types of disability. However, it must
be stressed that no two persons with disabilities have the same needs.
The same condition may have a major effect on one person but a minor
effect on another. While there are occasions when disability does
severely affect the ability of a person to participate in an interview,
a great many people with a disability can be fully effective respondents
and speak for themselves.

**[What is Disability]{.underline}**

Disability is impossible to describe in one or two sentences, partly
because it covers a huge range of things and also touches a large number
of people. Generally, a disability is the inability to perform one or
more major life activities because of an impairment, e.g., missing,
damaged or weakened body part or function. Major life activities include
the following:

-   Having a full range of movement while standing, lifting, walking and
    so forth,

-   Having intact senses (vision, hearing, touch, smell, taste,
    balance),

-   Communicating with others (speaking and writing),

-   Learning and working,

-   Caring for oneself in hygiene and homemaking,

-   Using mental processes such as thinking, concentrating, and problem
    solving,

-   Interacting with others and developing and maintaining
    relationships.

Disability is not a specific medical diagnosis such as spinal cord
injury, cerebral palsy, or intellectual difficulties. While this
information is often important in a medical context, it is normally not
what arises when you come into contact with someone with a disability

**[Informed Consent]{.underline}**

In all survey work, it is important to obtain informed consent from the
respondent. This means that the person understood what is involved in
taking part in the survey, and has agreed to participate. In the case of
children (under age 16 for our purpose here), a parent or guardian must
be present during the interview and must agree that the child can
participate. In interviewing people, it is important to ensure that the
person understands what is involved in taking part --

-   that you will be asking questions that the respondent will answer,

-   what the questions will cover,

-   the approximate length of time it will take,

-   that the information is confidential (nobody apart from you and the
    researchers can link the answers back to this person),

-   that the person is free not to participate or to refuse to answer
    any particular questions

-   the purpose of the research

-   who commissioned the research and

-   that we cannot promise any immediate benefit as a result of the
    person taking part in the survey.

In the case of people with intellectual disability, depending on the
severity of the condition, you may need to take some extra time to
ensure that the person is freely giving consent to participate. When in
doubt, suggest that the person may wish to have a friend or a family
member present.

It is also important to leave a copy of the brochure with each
respondent. If the person has a visual impairment, and uses a computer,
we can e-mail them a copy \[Please provide us with the email address\].
Alternatively, you could take some time at the end to read it to the
respondent.

**[Meeting People With Disabilities]{.underline}**

-   Meeting people with disabilities is no different from meeting anyone
    else - it is simply a matter of common courtesy. If in doubt, rely
    on your own common sense and ask the person how you can help.

-   People with disabilities have the right to say no.

-   People with a disability want to be treated in the same way as
    people who do not have a disability. They shouldn\'t be treated as
    special or incapable so you shouldn\'t take over tasks that they
    could quite well do themselves.

-   People with disabilities, like anyone else, may get upset which can
    be for various reasons. For example, they may have been offered help
    17 times that day already or they are simply being rude and
    unreasonable. If you believe it is the latter, you should confront
    them.

-   When the people you are meeting are adults you should treat them in
    the same way as you would treat any adults. Don\'t treat them like
    children. For example, don\'t call them by their first name without
    asking them if that is alright.

-   When interviewing people with a disability, especially if the person
    is present during a proxy interview, be sure to address the question
    to the person with a disability, and not to the interpreter or the
    person facilitating the interview.

-   Do not be embarrassed about using common expressions, such as \"see
    you later\" or \"I\'ll be running along now\", which may relate to
    the persons impairment.

-   Always relate to the person with: respect, dignity, empathy and
    equality.

**[Meeting People with Hearing Disabilities]{.underline}**

People with hearing impairments may be born deaf or may become gradually
or suddenly deaf through accidents, illness or environmental factors.
They may still have some residual hearing and a very small percentage
may have no hearing at all.

It is important to note the difference between people who have developed
a hearing impairment before learning to talk and read - pre-lingual
deafness - and those who develop a hearing impairment after acquiring
speech - post-lingual deafness. People with pre-lingual deafness will
experience greater difficulties in acquiring speech and written language
as this is generally learnt through the spoken word. Many people with
hearing impairment may have speech or speech patterns that are difficult
to understand. However, this does not reflect their intelligence or
their proficiency in language.

**Communication and People with Hearing Disabilities**

Most people with hearing disabilities have a preferred method of
communicating. It may be using speech, lip-reading, sign language,
writing or through a combination of these methods.

*[Lip-reading]{.underline}\
*Lip-reading involves watching the lips of the person who is talking and
determining what is being said. This can be difficult, as several sounds
have a similar appearance. Most people with hearing disabilities have
some facility with lip-reading, and some use it as their main method of
receiving communication. It also helps, with the lip reading, if the
person is provided with contextual clues to provide extra information.
However, it does take time to become accustomed to how a person speaks
and getting used to different accents can take time.

*[Sign Language]{.underline}*

A large proportion of people who are deaf use sign language. Sign
language allows people to convey exactly the same meaning, through
signs, as through spoken language. If a person uses sign language as
their method of communication, it may be necessary to provide an
interpreter. This may be a family member, friend, colleague or a trained
interpreter.

**Equipment**

*[Hearing Aids]{.underline}*

Many people, who are hearing impaired, use a hearing aid in addition to
lip-reading. These work by amplifying sound, but, as all sounds are
equally amplified, it is important to eliminate background noises.

*[Induction Loop Systems]{.underline}*

For many people who use a hearing aid, an induction loop system can also
be useful. The \'loop\' comes as either a room loop or an individual
induction loop, and works in similar ways using radio signals to
transmit sounds through a microphone to the person\'s hearing aid, which
has to be turned to the \'T\' switch to receive sound.

Room \'loops\' are either built in to the room or can be portable
systems that are plugged into a wall socket. You need to check that
there is good reception before use and that the microphone can pick up
sound well.

*[Radio Aid]{.underline}*

A radio aid works in a similar way to the induction loop system; the
speaker clips the microphone to his/her clothes, and the person using
the hearing aid carries the loop around his/her neck.

*[Telecommunications]{.underline}\
*Telephones can be adapted for use by people with hearing disabilities
and many telephones may be fitted with amplification devices or a devise
that may be used with a hearing aid. Alternatively, some people with
hearing disabilities attach a \'Minicom\' to the telephone, allowing
them to communicate through text. E-mail, faxes and text messages via
mobile telephones are also viable options for people who are deaf.

**[Interviewing People with Hearing Disabilities]{.underline}**

The following is recommended: -

-   Face the person at all times when speaking. Do not cover your mouth
    or rest your chin on your hand when speaking. Do not turn away when
    speaking - stop speaking when you turn to look at a screen or get
    information.

-   Get the person\'s attention before you start speaking, using visual
    cues.

-   Ensure that one person at a time is speaking.

-   If difficulties occur when you are speaking directly to a deaf
    person, you may want to use written notes or let them see the
    questions on the questionnaire.

-   Do not assume the person can lip read. Even if the individual can
    lip read, it is never wholly reliable. Only about 25% of words are
    visible on the lips, so you will have to check that you have got
    your message across.

-   If the person is lip reading, you should

-   Make sure you are facing the light and that your lips are visible
    (keep hands, etc. away from your mouth)

-   Speak slowly and clearly, at a steady rhythm. Shouting does not help
    and may in fact make it more difficult to understand.

-   Use facial expressions and gestures that emphasise the words you
    use.

-   If you think you have not been understood, do not repeat the
    sentence. Think of ways to rephrase your sentence.

-   If an interpreter is present, speak directly to the deaf person. The
    interpreter will sign the conversation between you.

**[Meeting People with Physical Disabilities]{.underline}**

People with physical disabilities may be born with an impairment or
acquire one later in life. The causes of the impairment are very wide
and the impairment can affect the person\'s bones, muscles, joints,
nerves, tendons, spinal cord and/or the brain. The condition leading to
the impairment can be stable or degenerative, as in the case of multiple
sclerosis. The person\'s impairment renders them unable to do the same
range of physical activities that able-bodied people do and,
consequently, they will face barriers of access. Barriers of access may
be overcome by examining:

-   access to and within the physical environment;

-   adapted or specialist equipment;

-   use of personal and/or training assistants.

**Overcoming Barriers of Access**

*[Access to and within the Physical Environment]{.underline}*

One of the key issues for people with physical disabilities is that of
access to, and within, buildings. The individual may be a person who
uses a wheelchair or with a mobility impairment. It may be an individual
who has a perceptual or neurological impairment who may have difficulty
with co-ordination. Staff should explore and discuss, with the
individual, possible barriers within the physical environment that need
to be considered and, where necessary, overcome these barriers. For
example, it may be necessary to modify or change furniture in rooms to
provide access, or they may need help in negotiating their way around an
unfamiliar environment.

Some people with physical disabilities may have a car and may need
reserved parking. Alternatively, they may face barriers with regard to
access to public transport, so allowances may need to be made for extra
travel time.

Potential access problems, e.g., toilet facilities, parking, steps, etc
should be identified as part of the interview process.

*[Adaptation to Equipment]{.underline}*

Some people with physical disabilities may require adaptations or
specialist equipment to help augment their mobility impairment(s). They
may need tape recorders to record notes, notetakers and/or computers.
They may also have specialist equipment to help them manipulate items or
machinery.

Some individuals will have knowledge about the specialist equipment and
computers that are available to them, but some will not and will need to
be informed.

*[Personal or Training Assistants]{.underline}*

Some people with physical disabilities will have personal care needs.
For some, this may mean they may need a personal assistant to help with
self-care skills, eating, writing, etc. The person may also need help
with moving from place to place and carrying equipment or notes. It is
important to note whether the individual with a disability has a
personal assistant.

**[Interviewing People with Physical Disabilities]{.underline}**

The following is recommended: -

-   If you are talking to someone in a wheelchair try to put your head
    at the same level to avoid stiff necks.

-   Do not push a wheelchair without asking first.

-   People who use sticks or crutches may find it difficult to use their
    hands while standing.

-   Never address the escort or personal assistant, instead of the
    person with a disability, always talk to the person.

-   Remember that first impressions are often deceiving. New and
    stressful situations may increase muscle stiffness and decrease
    individual\'s control and dexterity.

**[Meeting People Who Are Blind or Partially Sighted]{.underline}**

People with visual impairments may be born with an impairment or acquire
one later in life. It is important to note that most people, while
registered blind, may retain partial sight; only a very small percentage
are totally blind. People with visual impairments will have different
degrees of sight and their impairment may differ. Some people may have
blurred vision, or cannot judge distances and speed, or are unable to
distinguish between objects that have a similar colour or shape. Other
people with visual impairments may only see things that are very close,
or have a restricted range of vision, such as tunnel vision that
excludes periphery vision. A small proportion of people with visual
impairments may have another impairment.

*[Mobility]{.underline}*

Some people with visual disabilities will own guide dogs, which are
highly trained and obedient animals and must be allowed to accompany
their owner anywhere she/he goes. The dogs will need to have access to
an exercise area at regular intervals and to water. Other individuals
with visual disabilities will use a long cane, usually white in colour,
to help them with their mobility.

*[Communication with People Who Are Blind or Partially
Sighted]{.underline}*

Most people with a visual disability will have a preferred method of
accessing printed matter - be that through large print, tape, Braille,
or a combination of these. Alternatively, many people with visual
disabilities use voice activated computer and may require printed matter
on disc or via e-mail.

As a general rule of practice, printed material needs to be clear and
simple, with a good contrast in colour - usually black ink on white
paper - and an uncomplicated layout. The font size, depending on the
font used, is normally 14 -16 and 1.5 or doubled spacing between
sentences.

*[Large print]{.underline}*

Large print, is material printed using a minimum letter size of 14 point
and preferably 16-18 point letters. It can be produced using either a
word processing package on computer or enlarging material on the
photocopier. It is important to note that, if the print is too large, it
becomes difficult to read and retain a sense of continuity.

People with visual disabilities who prefer large print may also use an
adapted VDU, which projects an enlarged version of a page onto a screen.
They may also use computer software packages that enlarge print or via
the Zoom on standard Word packages.

*[Tapes]{.underline}*

Many people with visual disabilities opt for using tape cassettes. It is
the preferred method for large amounts of print such as textbooks or
large reports or reference material. While many computers can now output
information through a voice synthesiser, this is not practical for large
amounts of printed matter.

*[Braille]{.underline}*

Braille is a system based on patterns of raised dots to represent
letters. Very small proportions of people with visual disabilities use
Braille, as it takes some time to learn. However, Braille offers a
system that is exactly parallel to print. It is possible to get a
Braille embosser that prints material from a computer so that the person
can have unlimited access to materials, but most institutions send
material away to be transferred into Braille.

-   When help is needed on unfamiliar ground - say, \"Let me offer you
    an arm\". Offer your arm to the blind person just above the elbow.
    This will enable you to guide, rather than propel, and your guide
    partner will be a half step behind you.

-   Do not grab anyone by the arm unannounced - they might think you are
    a mugger.

-   If you are guiding a blind person up or down steps, warn them that
    there are steps coming up and make sure you are a half pace in front
    of the person.

-   When offering a seat, place the person\'s hand on the back or arm of
    the chair.

-   When providing information or giving instructions, ensure they are
    precise and specific. For example, do not say \'over there\' and
    accompany this with vague pointing; you need to state, \'left-hand
    side of the desk\'.

**[Interviewing People Who Are Blind or Partially Sighted]{.underline}**

The following is recommended: -

-   When you approach a blind person remember to identify yourself
    clearly, and indicate anyone else who is present - e.g. \"Hello, Mr.
    Clarke, I\'m John Murphy and I have Pat Casey with me\". You can
    touch them lightly on the arm to indicate you are addressing them.

-   Do not leave someone talking to an empty space. Say when you wish to
    end the interview or move away.

**[Meeting People with Speech and Language Disabilities]{.underline}**

Some people with speech and language disabilities may have difficulties
in articulating sounds or understanding and formulating thoughts in
spoken or written words (dysphasia). These difficulties may be
immediately perceptible, e.g. the person has a bad stammer or if they
have pre-lingual deafness (see unit in this section on People with
Hearing Disabilities), or they may not emerge until discussion focuses
on more abstract matters. Difficulties in speech and language may be
associated with particular conditions, e.g. when the facial muscles are
affected, as in stroke and cerebral palsy.

Most individuals will have a preferred method of communication and you
will have to negotiate with them as to what it is and what the optimum
method of communication will be between you. It may be through written
communication, speech synthesiser, sign language, lip-reading or via a
Personal Assistant.

**[Interviewing People with Speech and Language
Disabilities]{.underline}**

The following is recommended: -

-   People with a hearing disability will sometimes have speech that is
    difficult to understand since they have never heard others speak and
    have nothing to copy. Equally, people with conditions that affect
    the muscles of the jaw and mouth may not be able to articulate well,
    while others may have a severe stammer.

-   Be encouraging and patient. Do not correct or speak for the person.
    Wait until the person finishes and resist the temptation to finish
    sentences.

-   Where possible, ask questions that require short answers or just a
    nod or shake of the head.

-   If you do not understand, do not pretend. Repeat as much as you do
    understand and use the person\'s reactions to guide you. Ask them to
    tell you again, if necessary.

**[Meeting People with Specific Learning Disabilities]{.underline}**

People who encounter difficulties with learning, and using particular
skills are referred to as having specific learning difficulties, the
most common difficulties being language problems, particularly with
reading and writing - sometimes referred to as Dyslexia. Others who may
encounter specific learning difficulties are people who have head
injuries, as well as people with cerebral palsy who may have specific
learning disabilities, in addition to other physical and/or sensory
disabilities.

People with specific learning difficulties may also have difficulties
with spatial orientation, such as directions like left and right;
hand-eye co-ordination; remembering common sequences such as the days of
the week, tables and the alphabet; the sound of words or the order of
numbers, such as phone numbers; and with arithmetic concepts, such as
decimals. They may also be perceptually impaired, having difficulties
with a specific modality such as vision, auditory discrimination, or
their sense of touch. These types of impairments do not arise because of
any associated medical condition.

A psychologist often identifies people with specific learning
difficulties via educational and psychological assessments.

People with specific learning difficulties do not have intellectual
difficulties, and lack confidence in the educational/training
environment because of their struggles with learning. Because of this,
some people may require extra help with basic reading, writing and
numeric skills and may need to be referred to a teacher or tutor trained
in this area. Alternatively, they may have developed their own ability
to compensate for the difficulties they experience by using alternative
learning methods. Computer technology has also been a great help to
people with specific learning disabilities. Most software packages
include spell and grammar checks, and people can also use scanners,
screen readers and voice-recognition software.

**[Interviewing People with Specific Learning
Disabilities]{.underline}**

The following is recommended: -

-   If the person is having difficulties in understanding you, take time
    to explain something, using a variety of formats and be prepared to
    explain it more than once. Concentrate on keeping your language
    straightforward and avoid using jargon. If necessary, offer to show
    them the questionnaire.

-   Depending on the nature of the impairment, people with specific
    learning difficulties may require assistance in participating in the
    interview.

-   People with specific learning difficulties may prefer using
    computers to provide legible output and to enable them to use a
    spell check. This is particularly relevant to the part of the
    questionnaire where we ask the person for feedback.

**[Meeting People with an Intellectual Disability (General Learning
Disability)]{.underline}**

The term intellectual disability is currently replacing use of general
learning disability. Sometimes the latter term can lead to confusion
with learning difficulties such as dyslexia, so the term intellectual
disability is preferred.

People with an intellectual disability have a degree of impairment to
their intellectual abilities, which can range from a very mild to a
severe impairment. Generally, a person with such a disability will not
attain the full intellectual capacities of a normal adult and will, on
average, be slower at learning and carrying out tasks.

Intellectual disability can have a variety of causes. These include
brain damage during or immediately following birth, infections,
chromosomal/genetic malformations and socio-environmental factors that
may have affected, in particular the mother. However, the cause must
occur during the developmental years 0 - 18.

People with a mild intellectual disability will be slower at learning
but may be able to obtain employment in the open labour market. People
with a moderately severe intellectual disability are impaired to the
extent that they will probably require supported or sheltered
employment. The condition is permanent, as it is the result of damage
to, or malfunction of, the brain itself and is sometimes accompanied by
other disabilities of a physical nature. In general, a person with an
intellectual difficulty functions at a level that is significantly lower
than their chronological age.

As an intellectual disability is often confused with mental illness, it
is very important that staff fully understand the difference between
these two conditions when considering potential services and programmes
for the individual.

**[Interviewing People with an Intellectual Disability]{.underline}**

The following is recommended: -

-   People with learning disabilities, or intellectual disabilities, may
    have difficulties in reading and writing, or in understanding
    questions.

-   It is important to go through the following points to make sure that
    the person is giving an informed consent to participate in the
    interview:

-   That you are conducting a survey on disability

-   That this means you will be asking several questions

-   That the information will be used for research

-   That the information is treated in confidence -- nobody else, apart
    from the interviewer and the researchers, will be able to tell who
    the respondent is

-   You should offer to explain forms or particular terms or language
    that may not be generally understood.

-   Listen carefully to what the person is saying, not how it is said.

-   Be prepared to explain more than once, if the person does not
    understand the first time.

-   If necessary, suggest that the person may want to have a friend or
    relative present during the interview.

-   Offer to write down your name and telephone number if the person
    wants to come back to you later for clarification.

**[Meeting People with Emotional or Mental Health
Disabilities]{.underline}**

The definition of mental health and mental illness is related to what is
considered normal and abnormal in our society. It also relates to
matching our perception of what one may cope with and what one may find
threatening. Prejudice, or barriers of attitude, is often based on our
perception of someone who has mental health difficulties and the fear
which may arise as a result of that perception. It is important to
remember that one in four people can experience mental health
difficulties at some point in their lives and that mental health
problems do not manifest themselves all the time.

People with mental health difficulties may be affected across a
continuum of disabilities. Some will have conditions that are temporary
and easily treated through rest, medication and/or counselling. Some
will have conditions that may become severe enough to disrupt their life
and render them unable to cope with day-to-day living; others may have
long-term conditions with periods of good health interspersed with bouts
of poor health. Some people with mental health difficulties may need to
take medication to alleviate the condition. This may interfere with
concentration and stamina, impacting on timekeeping.

Mental Health Difficulties are divided into two broad groups: neuroses
and psychosis.

[Neurotic Illnesses]{.underline}

Neurotic Illnesses are an exaggerated way people usually respond to
stress. A person\'s problems become so big that they interfere with
normal life and the person can no longer cope with them effectively.
Although their feelings become disturbed, a neurotic person is still
able to reason and is well aware of the problems and difficulties he or
she is going through.

[Psychotic Illnesses]{.underline}

Psychotic Illnesses are where people lose touch, of what is going on
around them, with ordinary reality. Their thoughts become disturbed as
well as their feelings, and they are no longer able to sort out what is
real from what is not. It is important to remember, though, even in a
very severe psychotic illness the person experiences periods when he/she
can think and reason perfectly.

Characteristic of some people with mental health difficulties is lack of
confidence or self-esteem and feelings of vulnerability, so every effort
needs to be made to put them at their ease. This means support and
flexibility, through the occupational guidance process, and
encouragement by highlighting small achievements.

**[Interviewing People with Mental Health Disabilities]{.underline}**

The following is recommended:

It is important to remember that the side effects of some medications
may interfere with the individual\'s concentration and stamina. In these
circumstances, it is important to keep the interview focused and short.
If necessary, arrange to come back at a later time or date to complete
the questionnaire. Establish a good relationship and give the individual
plenty of encouragement and support. Sometimes people with mental health
difficulties may be withdrawn or disruptive because they have not
understood, or experience frustration in trying to complete a task.
Intervene and break the cycle by suggesting a break or another
interview. Make allowances for stressful events. Either may contribute
to the individual not performing at their potential.

**[Meeting People with Hidden Disabilities]{.underline}**

Some people will have hidden or unseen disabilities; that is,
disabilities that do not manifest themselves as an ongoing, outwardly
visible condition. These include epilepsy, diabetes, ME, haemophilia,
asthma, anorexia and other chronic conditions. Often these conditions
may affect the person\'s health and stamina. For example, the person who
has a hidden disability may have stable health for most of the time, but
stress, some unforeseen incident or the condition itself, may cause
their health to fluctuate occasionally. In addition, the condition
itself or medication for the condition may have an effect on the
person\'s stamina. It is important to remember that issues of health and
stamina will vary from person to person - some people will not be
affected in any way while others require regular breaks. In some
instances, such as a person who has kidney problems, the person may need
time for weekly medical treatments.

Often people with some of these conditions face considerable prejudice
with regard to employment, education and social interaction and may be
inclined not to disclose their disability to a potential employer.
Therefore, it is important that you re-assure these individuals by
stating how the information will be used and working out, together, the
best way to disclose information about their particular disabilities.

**[Interviewing People with Hidden Disabilities]{.underline}**

The following is recommended: -

-   Ensure that stressful situations are minimised. This may be done by
    making the individual feel at ease and confident.

-   Be prepared to make another visit to complete an interview,
    depending on the individual's stamina and energy levels.

## The Questionnaire

There are two questionnaires, one for short with 6 questions and one
long with more than questions. The questionnaires are very similar, but
some of the sections are not included on the short questionnaire.

**Outline of the Questionnaire**

The questionnaire is divided into 6main sections, as follows:

  ------------- ------------------------------------------------------------------
  Section 1:    
  Activities    
  and Aids      

  A             Seeing

  B             Hearing

  C             Walking

  D             Remembering & concentrating

  E             Self Care

  F             Communication

  G             Any other difficulty (specify)

  Section       
  2:Help from   
  Other People  
  and Attitudes 
  of Other      
  People        

                

  Section 3:    
  Background to 
  Reduction in  
  Activities    

                

  Section 4:    
  Major Life    
  Areas         
  (Education,   
  employment,   
  leisure,      
  transport,    
  housing)      

                

  Section 5:    
  Demographic   
  Information   

                

  Section 6:    
  Feedback from 
  Respondent    

                

  Section 7:    
  Feedback from 
  Interviewer   
  ------------- ------------------------------------------------------------------

**The Profile Sheet**

This sheet on the first page of the questionnaire is to help you with
the routing. At certain points you will be instructed to mark 'Yes' for
one of the items on the profile sheet.

If the person has 'Yes' ticked for any item on the profile sheet, then
for the purpose of items such as N1 Interviewer Check: Does Respondent
experience difficulty in any of the areas A to G? The respondent is
considered to have a disability for the purpose of routing through the
questionnaire.

**Specific Questions**

+----+-----------------------------------------------------------------+
|    | I am going to ask you a series of questions about your ability  |
|    | to do certain activities and about aids or forms of assistance  |
|    | that are useful to you. Please tell me only about those         |
|    | difficulties that have lasted, or are expected to last, six     |
|    | months or more.                                                 |
|    |                                                                 |
|    | **Note that a condition or problem expected to last less than 6 |
|    | months should result in a 'no' response. This is true of all    |
|    | the filter items from A to G**                                  |
+----+-----------------------------------------------------------------+
|    |                                                                 |
+----+-----------------------------------------------------------------+

**Instructions on specific questions to be entered here.**

**Feedback Sections**

Since this is a pilot survey, it is very important to get feedback from
respondents on how the survey was for them. In particular, we are
interested in whether there were issues not covered that are important
to the respondents and on whether the items covered are relevant to
them.

We are also very anxious to get feedback from interviewers on your
impression of how the interview went. You should fill out the
Interviewer feedback form as soon as possible after leaving the
respondent. Any additional comments you may have would be very welcome.