Experiences and Expectations of Dis-abled People ...doc.ukdataservice.ac.uk/doc/6021/mrdoc/pdf/6021userguide.pdfOnce the interviewer had sampled from any multiple dwellings, he/she

Experiences and Expectations of Dis-abled People – Technical Report A research report for Office for Disabil-ity Issues

Prepared by: GfK NOP Social Research

Your contact: Bridget Williams

Phone: +44 (0)20 7890 9991 Fax: +44 (0)20 7890 9589 e-mail: [email protected]

UK Data Archive Study Number 6021 - Experiences and Expectations of Disabled People, 2007

mailto:[email protected]

Table of contents

1 Introduction ................................................................. 1 2 Sampling...................................................................... 2 3 Questionnaire development....................................... 4

3.1 Screening questionnaire ........................................ 4

3.2 Main questionnaire ................................................ 4

3.3 Shortened version of the questionnaire ................. 4

3.4 Easy read questionnaire ........................................ 5 4 Fieldwork ..................................................................... 6

4.1 Pilot........................................................................ 6

4.2 Briefings................................................................. 7

4.3 Main fieldwork........................................................ 7

4.4 Contact procedures ............................................... 7

4.5 Quality control measures ....................................... 7 5 Response Rates .......................................................... 9 6 Analysis ..................................................................... 11

6.1 Coding ................................................................. 11

6.2 Data processing................................................... 11 7 Weighting................................................................... 12

7.1 Geographic weights ............................................. 12

7.2 Demographic weights .......................................... 13 8 Estimating the Design Effect on Sampling Errors . 15

8.1 Clustering............................................................. 16

8.2 Probability of selection......................................... 17

8.3 Post-stratification weighting ................................. 17

8.4 Total design effect ............................................... 19

GfK NOP Experiences and Expectations of Disabled People

GfK NOP Social Research, April/May 2008, Project Number 451143 1

1 Introduction

This technical report provides details on the Experiences and Expectations of Disabled People (EEDP) survey, carried out by a consortium led by GfK NOP, on behalf of the Office for Disability Issues (ODI).

This report provides details on:

• Sampling • Fieldwork procedures • Response rates • Analysis • Weighting



2 Sampling

The primary sampling unit for the survey was the Super Output Area (SOA) for England and Wales and Data Zone for Scotland. Data Zones are approximately half the size of SOAs so twin Data Zones were selected i.e. adjacent zones. The SOAs and Data Zones were drawn from a listing of all such areas in Great Britain, following stratification by:

• Nation (England, Scotland and Wales) • County/Unitary authority • Urban/rural identifier (ONS Code) • Social ranking indicator (Overall IMD Score)

The sampling points were drawn with a probability proportionate to the absolute number of adults aged 16+ who identified themselves as having a long term limiting condition at the 2001 Census. The need to over-sample Scotland and, especially, Wales meant that the sample was selected separately for each of the nations of Britain - 29 points were sampled for each of Scotland and Wales along with 107 for England. Within each sampling point, every Nth address was sampled from the small user section of the Postcode Address File (PAF).

When an interviewer called at a sampled address, the initial task was to establish whether it was (a) residential and (b) occupied. If it was, the interviewer had to determine the number of properties or self-contained dwelling units at the address – these were defined as “self-contained accommodation behind its own front door”. If there was more than one dwelling at an address, the interviewer selected one at random by listing each in a systematic way (i.e. Flat A, then Flat B, etc) and then using the Kish Grid provided on the contact sheet (included in these appendices).

Once the interviewer had sampled from any multiple dwellings, he/she needed to determine whether it was occupied by one or more households – a household being defined as “a person, or group of people who normally live at the property, who share a living or sitting room, or at least one meal a day”. If there was more than one household, the interviewer then had to establish which one to interview, again using the random selection of the Kish Grid technique.

Finally, when the household was identified, the interviewer had to screen all adult household members for eligibility, using a number of questions laid out on the contact sheet. This process was done by asking a responsible adult (generally the householder) about all adult household members. If the person helping with the enumeration identified that there was someone



else in the household who was eligible, the interviewer would repeat the screening questions with that person to ensure eligibility.

Interviews were attempted with all adults who were identified as being eligible. If no-one within the household was eligible, the interviewer coded “no eligible respondent” on the contact sheet. Details of the survey response rate are given below.



2 Questionnaire development

Due to the complex and inclusive nature of this research study a number of questionnaires were needed and these are detailed below.

2.1 Screening questionnaire A screening questionnaire was designed by ODI, GfK NOP and the Reference Network. The purpose of this questionnaire was to ensure that all eligible people fitted the screening criteria i.e. not just the people who might consider themselves as “disabled”. The questionnaire included questions on current and previous long term limiting illnesses, functional impairments and whether people had ever been diagnosed with MS, cancer or HIV.

A pilot of the screening questionnaire was carried out (please see Fieldwork), and the final version is included in the Contact Sheet

2.2 Main questionnaire The main questionnaire was designed jointly by ODI, GfK NOP and the reference network. The final questionnaire took an average of 30 minutes to complete but there was considerable variation in length, depending on the needs of the respondent. A pilot of the questionnaire was carried out; please see “Fieldwork”.

The agreed questionnaire was programmed for use as a CAPI (Computer Assisted Personal Interviewing) questionnaire. The programming was carried out at GfK NOP. A copy of the full questionnaire is included after technical report.This shows details of logic/range checks and filters included in the programme. A copy of the supporting showcards are available after the questionnaire.

2.3 Shortened version of the questionnaire Through discussions with the Reference Network and following the pilot, a need was identified to have a shortened version of the questionnaire. This was to ensure that respondents for whom a 30-40 minute questionnaire would not have been appropriate, would be able to participate. GfK NOP and ODI jointly identified the key questions for the shortened version of the questionnaire.



2.4 Easy read questionnaire One of the over-arching objectives of the research was to ensure that it was as inclusive as possible.

Learning difficulties are wide ranging and people’s needs vary greatly depending on the level of severity. The main questionnaire was not appropriate for people who had certain types of learning difficulties. To ensure participation in the research an easy read version of the questionnaire was offered to all respondents who were identified as having a learning impairment.

A screening questionnaire was created to help the interviewer and the respondent make a joint decision as to what version of the questionnaire would be most appropriate for the respondent to complete.

The easy read questionnaire was based on the shortened version of the main questionnaire including only the key question.GfK NOP worked closely with a specialist company called Adept to translate the questionnaire and associated materials (letter, showcards and thank you leaflet) into an easy read format.



3 Fieldwork All fieldwork was carried out face to face by fully trained members of GfK NOP’s own fieldforce, working to the criteria of the Interviewer Quality Control Scheme (IQCS).

3.1 Pilot Prior to the main fieldwork a two stage pilot was conducted. The initial pilot was to test the screening questionnaire while the second pilot was to test the content and wording of the full questionnaire.

3.1.1 Stage 1- pilot Stage 1 of the pilot tested the screening questions to ensure that all eligible respondents would be included within the survey.

The screening pilot took place in June 2007 and eight interviewers worked on the pilot totalling 300 interviews overall. Each interviewer was personally briefed regarding the purpose of the pilot and debriefed on their findings and experience.

Much thought and consideration went into the screening questionnaire as there was concern that the questions could be considered as being too focussed on the medical model of disability but a certain level of detail was required to ensure that all eligible respondents were included. Two sets of questions were tested; the first set were the questions used on the ONS omnibus while the second set were the screening questions used on the initial qualitative work, which had received input from the Reference Network.

A number of other questions were included within the questionnaire to make it feel more balanced for the respondent but these responses were not analysed at the pilot and were removed for the main stage of interviewing.

Feedback from the pilot proved that a combination of both the ONS Omnibus and the qualitative screening questions were the most viable and practical solution.

3.1.2 Stage 2- pilot A second stage of the pilot was carried in July 2007 and the purpose of this exercise was to test the wording and the understanding of the main questionnaire. A total of 76 pilot interviews were conducted by the 8 interviewers who worked on stage 1 of the pilot.



All interviewers were personally briefed and were provided with feedback forms where they could make a note of any questions or sections that caused problems. A personal debriefing session was held after the interviewers had completed their interviews and where appropriate revisions were made to the questionnaire.

The main post-pilot amendments to the questionnaire was a reduction in length as the test questionnaire was significantly too long, and the confirmation of a need for a shortened version for the questionnaire for those respondents for whom it would be inappropriate to do a 30-40 minute interview.

3.2 Briefings All interviewers were personally briefed by the GfK NOP research team. In total, 13 briefings were held at various locations across Britain. All interviewers completed a training session convened by a disabled trainer from Jim Lawson Associates. The session was designed to enable both respondents and interviewers feel more comfortable during the interview.

3.3 Main fieldwork Main fieldwork took place in July and August 2007. Fieldwork procedures are covered below.

3.4 Contact procedures A contact sheet was issued for each sampled address. Interviewers were required to make a minimum of 6 calls at each address, before returning the contact sheet with a final outcome. The calls were a combination of evening, weekend and daytime calls to ensure a representative sample of the disabled adult population.

Interviewers were provided with supporting letters to hand out to respondents if they required further information. These letters were not sent out in advance as it was felt that some potential respondents would be put off by a letter from the ODI i.e. “I’m not disabled so what does this research have to do with me?”

3.5 Quality control measures For all face-to-face surveys, GfK NOP’s standard quality control procedures exceed those stipulated by IQCS (Interviewer Quality Control Scheme) and BS7911 (the British Standard Specification for Organisations conducting Market Research) and are summarised as follows:



• Interviewers are appraised once a year. However new interviewers are accompanied 3 times in their first year and receive additional support where appropriate.

• In addition, 10 per cent of respondents are re-contacted by phone or letter on all surveys to check classification and key questions.



4 Response Rates

Two response rates were calculated for this study and they are demonstrated in tables 1 and 2 below. The first response rate calculated was for screening interview and an adjusted response rate of 77% was achieved.

A main interview adjusted response rate of 70% was achieved. This response rate was calculated on those people who were eligible for interview only.

4.1 Screening response rate

Table 1: breakdown of issued addresses

Addresses issued 7571 Vacant 293 Derelict/Demolished 19 Non-residential 88 Not found 55 Institution only 8 Not yet built 7 Unsure if occupied after 6+ calls 162 Total invalid addresses (deadwood)

632

Valid addresses 6939 100% Too ill 25 0% Away during fieldwork 66 1% Office refusal 11 0% Contact made with household but information about occupants refused

992 14%

Entry to block or scheme refused 26 *% Occupied but no contact with adult aged 18+ after 6 or more calls.

276 4%

Some contact but screening questionnaire not completed after 6+ calls

80 1%

Other 115 2% Completed screening interviews 5348 77%



– households

4.2 Main interview response rate

Table 2: Eligibility of screened individuals

Screened households 5348

Screened individuals 10,093 100% Ineligible individuals 7431 74%

Eligible individuals 2662 26% 100%

Completed interviews 1860 70%



5 Analysis

5.1 Coding

Open-ended questions were coded by GfK NOP’s Coding department. This comprised:

• Coding of industry and occupation for current/previous work, using Standard Industrial Classification (SIC) and Standard Occupational Classification (SOC)

• Coding of social and economic grade, using National Statistics Socio-economic grade (NS-SEC)

• Coding of responses to open-ended questions, using code frames drafted by GfK NOP and agreed with ODI.

5.2 Data processing

CAPI data was converted into SPSS format, with an accompanying document specifying variable names and filters. Data from the contact sheets were input using scanning, and analysis of these data has been used as part of this technical report.



6 Weighting

The survey data needs to be weighted in a number of ways in order to reflect:

• Probability of dwelling selection • Probability of household selection • Geographic spread • The residual demographic imbalances

The first two of these weights deal with differing probabilities of selection. Very few addresses in this survey needed sampling by interviewers for either dwelling or household selection.

6.1 Geographic weights

The original sample design boosted the number of interviews in Wales and Scotland to ensure that the achieved sample size in these areas was robust enough for independent analysis. To produce results representative of Great Britain these areas were down weighted at the analysis stage. Weights were applied based on 2001 census data for Long Term Limiting Illness (LTLI) as demonstrated in Table 3.



Table 3: Corrective geographic weights based on 2001 Census LTLI

LLTI census data

EEDP survey data

Region

North East 5.4% 3.0%

North West 13.3% 9.0%

Yorkshire and the Humber 9.1% 9.0%

East Midlands 7.3% 5.0%

West Midlands 9.3% 7.0%

East of England 8.2% 8.0%

South East 11.8% 9.0%

South West 8.5% 8.0%

London 10.5% 5%

Scotland 10.1% 16.0%

Wales 6.4% 21.0%

6.2 Demographic weights

Demographic weights have also been applied to the data as the initial weights did not produce a representative sample in terms of three key variables – sex, age and working status. The interim weighted profile was compared with the 2001 Census figures for LTLI and the appropriate target weights were applied to bring the data into line with the 2001 Census.



Table 4: Corrective demographic weights.

LLTI census data

EEDP survey data

Gender

Male 45.5% 41.4%

Female 54.5% 58.6%

Age

16-24 3.5% 3.2%

25-34 6.8% 4.5%

35-44 9.6% 8.1%

45-54 15.3% 14.4%

55-64 17.5% 21.7%

65-74 20.2% 24.0%

75-84 18.6% 18.4%

85+ 8.4% 5.8%

Working status

Active 26.7% 21.9%

Inactive 73.3% 78.1%



7 Estimating the Design Effect on Sampling Errors

The accuracy of estimates provided by any survey is dependent on the sampling errors produced by the survey. These errors are a function of a number of elements within the sample design:

• sample size

• probability of selection of respondents

• degree of clustering of the sample

• post-stratification weighting

Confidence intervals are most often used to describe this accuracy. They are generally presented in terms errors around percentage estimates eg. +/-5% on an estimate of 50%. The standard formulae for Confidence Intervals are based on the assumption that the survey design is a perfectly balanced, unclustered, random probability sample with no non-response bias. In almost all cases, sample designs will deviate from this theoretical ‘ideal’ in 3 key areas:

• Face-to-face surveys will often involve a degree of geographic clus-tering, in order to make the fieldwork task efficient.

• Consumer samples will often be drawn from the Postal Address file, where the unit of selection is a household rather than an individual. The selection of an individual from households of differing size means that the probability of selection will not be consistent – breaking a basic tenet of random probability sampling. In order to correct for this, post-survey weighting is required.

• Many surveys will involve disproportionate samples, in order to yield subgroups of sufficient size for analysis. Consumer surveys are often sampled disproportionately by region, so that there is sufficient representation of the smallest regions (eg. East and South West GORs). Post-survey weighting is required to correct these imbal-ances. Differential response rates by different demographic groups will also need to be adjusted by weighting.



The aggregate impact of these 3 elements of any sample design will increase the sampling errors (and therefore confidence intervals) for the survey by a measurable factor. The design effect is the factor by which the variance of survey estimates will increase over a ‘perfect’ sample. The design factor is the factor by which sampling errors and confidence intervals will increase (and is equal to the square root of the design effect).

7.1 Clustering

A contributing factor to the size of sampling errors will be the effect of using a multistage sample rather than a single-stage, unclustered one in face-to-face surveys. This clustering effect is determined by the intra-cluster correlation of each particular variable – that is, the degree of similarity of respondents within a cluster. The clustering effect for any variable within a survey may be calculated as follows:

DEFF (cluster) = 1 + (b-1) ρ

where b = no. of interviews in a cluster and ρ = intra-class correlation.

This correlation will differ for each variable. For example, variables such as tenure and class are more severely effected than those such as age and sex. Hence, the effect of clustering on sampling error cannot be calculated for the survey as a whole without an extensive stage of analysis. It is instead usual to adopt an ‘average’ estimate based on experience of surveys with similar sample designs. Given the design of this survey, a typical ‘average’ clustering effect is around 1.2. That is, the variance of estimates will be increased by 20%.



7.2 Probability of selection

The sampling frame used for this survey is the Postal Address file. This is a frame of households, rather than individuals. The sample design consisted of 3 stages of selection.

• Primary sampling units (PSUa) were SOAs in England and Wales and paired datazones in Scotland. These were sampled in a stratified fashion with probability proportional to the number of adults with long term limiting illness. A consistent number of addresses were then sampled within each PSU. Thus each address had a broadly equal chance of selection.

• Where there was more than one household at an address, all house-holds were included in the sample. Thus each household had a broadly equal probability of selection.

• All qualifying adults within a selected household were interviewed. Thus all qualifying adults had a broadly equal probability of selection.

Since probability of selection of survey participants was broadly equal, this element had no detrimental effect on sampling errors. Thus the impact on the survey design effect is neutral.

7.3 Post-stratification weighting

The effect of survey weighting on the accuracy of survey estimates is referred to as the Effective Sample Size (EFFSS). That is, the sample size for a pure probability sample that would yield a similar level of accuracy to the design in question. For example, a survey with an effective sample size of 70% would yield estimates with the accuracy of a pure probability sample (eg. no clustering or weighting) of 70% of its size.

The effective sample size is dependent upon the size of weights applied to respondents. In short, the more the weights deviate from 1, the smaller the effective sample size and the less accurate estimates will be.

There are two reasons for post-stratification weighting of a sample. The first is to correct for any disproportionate sampling. That is, to rebalance



the sample so that it is representative of the population. In this survey, boosts were designed for Scotland and Wales. Weighting is therefore required to reduce their impact on the total sample – back into line with the population.

The second reason is to correct for non-response bias. Inevitably, response rates will vary across different segments within the sample: eg. by age, gender, social class. Post survey weighting is used to correct the sample imbalances that result from this differential response. This weighting will have an impact on the effective sample size for the survey and will thus affect the size of survey errors.

The impact of weighting from disproportionate sampling is usually more extreme than that required to adjust non-response bias. For example, if a sample is balanced by GOR region, then corrective weighting will lead to an EFFSS of around 70% of the actual sample size. Correcting non-response bias will rarely lead to a reduction in EFFSS of more than 10%.

The effect of each stage of weighting is compounded, so that a design which draws disproportionate samples by region and has levels of demographic imbalance will yield an EFFSS which is in effect the product of both these factors.

The effective sample size for any survey may be calculated from the final weights, as follows:

EFFSS=[ ∑ wi ] 2 x sample size ∑ wi 2

where wi = weight applied to i’th respondent

In this survey, the effective sample size is 75% of the total sample size.



7.4 Total design effect

The total impact of the sample design is a compound of the clustering effect and the EFFSS produced by weighting. So, for this survey, the design effect would be:

Design effect = DEFF(clustering) x 1/Effective sample size

= 1.2 / 0.75

= 1.6

Thus, the design factor which must be applied to sample errors is given by:

Design factor = square root (Design effect)

= sqrt (1.6)

= 1.25

Hence confidence intervals would be increased by a factor 1.25.

Final questionnaire 6/7/2007 451143 EEDP Questionnaire FINAL DRAFT SIGNED OFF Enter screening criteria from contact sheet. Choose whether completing the long or short version, or the easy read version of the questionnaire A Demographics and household structure The first set of questions is about you, your home and the people you live with. A 1 INTERVIEWER CODE RESPONDENT GENDER

Male Female

A 2 And how old were you at your last birthday?

NUMERIC: ENTER NUMBER FROM 16-115

A 3 And excluding yourself how many other adults aged 16 or older live in this accommodation ? NUMERIC: ENTER NUMBER FROM 0-19

UNLESS LIVE ALONE AT A 3, FOR EACH PERSON ASK: SHOW CARD 1

A 4 What is their relationship to you? Spouse/partner

Parent (including in law or step parent) Grandparent (including in law or step)

Son/daughter (including in law, adopted, step or foster) Brother/sister (including in law, adopted, step or foster)

Other relative Friend

Personal Assistant/paid carer Other (specify)

Don’t know/refused

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Final questionnaire 6/7/2007

A 5 Can I just check, how many dependent children live in this accommodation with you? NOTE: dependent children are those aged under 16 and those aged 16-18 who are in full time education. These do not need to be the respondent’s own children. Include step/adopted/in law children NUMERIC: ENTER NUMBER FROM 0-19

UNLESS NONE AT A 5

A 6 How many dependent children are there in the household aged:

Under 5 years (ENTER NUMBER)

5-11 years (ENTER NUMBER) 12-15 years (ENTER NUMBER)

16-18 years in full time education (ENTER NUMBER) ASK ALL

A 7 RECORD TYPE OF ACCOMMODATION Detached house

Semi-detached house Terrace/end of terrace house

Purpose built flat/maisonette (self contained) Converted flat/maisonette (self contained)

Room(s) (not self contained) Other (specify)

SHOW CARD 2 A 8 And in which of these ways does your household occupy

this accommodation? NOTE: This refers to the accommodation as a whole e.g. a person living in parental home, need to know if parents own, rent, etc.

Own it outright Buying it with the help of a mortgage or a loan

Pay part rent and part mortgage (shared ownership) Rented from local authority/Council/New Town Development

Rented from Housing Association/Co-operative/Charitable Trust Rented (furnished) from private landlord

Rented (unfurnished) from private landlord Tied to job

Live here rent free (inc. rent free in relative’s/friend’s property) Squatting

Other (specify) Refused

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A 9 How long have you lived here?

Less than 1 year More than 1 year but less than 2

More than 2 years but less than 5 More than 5 years but less than 10

More than 10 years but less than 15 More than 15 years but less than 20

20 years or more Don’t know

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B Check questions Some of the questions I am going to ask you later in the interview are about your disability or long term illness . I would like to make sure that the questions sound as relevant to you as possible. B 1 Throughout the questionnaire, how would you prefer for me

to refer to your impairment? Would you prefer for me to refer to it as your

disability health problem

impairment

B 2 And can I just check, how old were you when your <health problem/impairment/disability> started to substantially limit your ability to carry out normal day to day activities? RECORD ACTUAL AGE, OR USE BANDS IF NECESSARY/REFUSED ENTER FOR 0 IF IMPAIRMENT FROM BIRTH ENTER 1 IF IN FIRST YEAR OF LIFE

At birth In first year of life

Aged 2-5 Aged 6-9

Aged 10-15 Aged 16-19 Aged 20-29 Aged 30-39 Aged 40-49 Aged 50-59 Aged 60-64 Aged 65-69 Aged 70-79

Aged 80 or over Don’t know

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C Aids and adaptations at home The next few questions are about your home

SHOW CARD 3 C 1 Do you have any of these aids or equipment to help you

with your day to day life?

Aids to mobility/dexterity Aids for people with visual impairments

• Walking stick or walking frame • Wheelchair • Disabled/allocated parking space • Ramp • Grab rail(s) • Alterations for better access (e.g wider

doors and door frames) • All the rooms you need on one level/no

steps/step-free access • Hoist • Stair lift • Aid/adaptations to help with washing/bathing

(e.g. bath board, changes to design of bath/shower room, graduated floor shower)

• Relocated bathroom or toilet • Aids/adaptations to help with cooking (e.g.

changes to design of kitchen, tilting kettle, kitchen implements with better grip handles)

• Assistance dog • Aids to help you use a computer

• White stick • Guide dog • Magnifier • Screen reader • Braille reader for computer

Aids for people with hearing impairments Other aids • Hearing dog • Adaptation to doorbell or telephone (e.g.

installation of loop systems) • Adaptations to fire alarm • Typetalk/text phone

• Electrical modifications (e.g. moving light switches, plugs etc)

• Additional heating • Entry phone • Individual alarm system

Other (specify) None of these

Don’t know

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Final questionnaire 6/7/2007 UNLESS ALL MENTIONED AT C 1, MASK THOSE MENTIONED AT C 1SHOW CARD 3

C 2 And which of them would you like, but don’t have? List as C 1

IF ALREADY HAVE ANY AIDS/APPLIANCES AT C 1SHOW CARD 4

C 3 We would like to know how much choice you had in deciding what equipment, aids and adaptations you have at home. Which of these statements best applies to the aids you told me about? CODE ONE ONLY

I always had a choice of what to get I usually had a choice of what to get

I usually get a say, even if it wasn’t my choice I never had a choice

Don’t know ASK ALL SHOW CARD 5

C 4 Thinking generally, which of these best describes how suitable the property where you live is for your needs?

Very suitable Quite suitable

Not very suitable Not suitable at all

Don’t know

IF NOT VERY/NOT AT ALL SUITABLE AT C 4C 5 Is there any particular reason why your home is not

appropriate for your needs? DO NOT PROMPT: CODE ALL MENTIONED

Structural limitations (e.g. rooms cannot be moved, no space for ramp)

Rented accommodation I cannot afford the aids/adaptations I need

I have asked for aids/adaptations, but my request was refused I do not know what is available/where to get it

Other reason (specify) Don’t know

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ASK ALL As well as aids and adaptations, some people have or need other practical help or support at home. SHOW CARD 6

C 6 Which of these things do you get help with on a regular basis? By regular, I mean at least once a week. CODE ALL THAT APPLY

Getting into or out of bed Personal care (washing, dressing, going to the toilet)

Household cleaning/laundry Cooking/preparing a meal

Managing and taking medication Shopping

Running other errands (e.g. going to the post office) Other (specify) None of these

Don’t know SHOW CARD 7

C 7 Which of these things do you get help with if and when you need it? CODE ALL THAT APPLY

Dealing with bank/managing money Filling in forms

DIY/odd jobs Other (specify) None of these

Don’t know

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Final questionnaire 6/7/2007 UNLESS ALL MENTIONED AT C 6 / C 7SHOW CARD 8

C 8 And which of these do you need help with but don’t get already? CODE ALL THAT APPLY: MASK THOSE MENTIONED AT C 6 / C 7

Getting into or out of bed Personal care (washing, dressing, going to the toilet)

Household cleaning/laundry Cooking/preparing a meal

Managing and taking medication Shopping

Running other errands (e.g. going to the post office) Dealing with bank/managing money

Filling in forms DIY/odd jobs


Don’t know IF RECEIVE ANY HELP AT C 6/ C 7SHOW CARD 9

C 9 Which of these people or organisations help you at least once a week? CODE ALL THAT APPLY

Spouse/partner Parent

Child/children Other family member

Friend/neighbour Social Services/Adult Services*

Home Help* Night Sitter*

Personal Assistant/Community Care Assistant* Day centre

Community nurse* Person from voluntary/charitable organisation (e.g. Age Concern)*

Someone else (specify) Don’t know

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Final questionnaire 6/7/2007 ASK ALL RECEIVING HELP FROM FORMAL SOURCES (*) AT C 9, OTHERS GO TO SECTION D SHOW CARD 10

C 10 Thinking about the help and support you receive from <relevant answers at C 9> , how much choice do you have on each of these issues? • Which person provides the support we have been talking

about • How often you receive this support • At what time the person comes to your home

A great deal Quite a lot

A little None at all Don’t know

SHOW CARD 11 C 11 And thinking generally, how satisfied or dissatisfied are you

with the following aspects of the help and support you get • The quality of help/support given • Whether you are treated with dignity and respect

Very satisfied

Quite satisfied Neither satisfied nor dissatisfied

Quite dissatisfied Very dissatisfied

Don’t know

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D Transport and getting around The next few questions are about transport and getting around. I would like you to think about all the travelling you did in the past month.

ASK ALL SHOW CARD 12

D 1 Which, if any, of these forms of transport have you used in the past month?

Car driven by yourself Car driven by friend/family member

Car driven by someone else Door to door services (e.g. minibus)

Mobility scooter Taxi/minicab

Bus or coach services Rail services

Light rail, tram or underground services None of these

Don’t know

SHOW CARD 13

D 2 Which, if any, of these do you hold? Blue or orange badge for use in a car

Disabled person’s railcard Local Authority concessionary fares (bus/rail) pass

Concessionary card for free or discounted taxi travel None of these

Don’t know

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SHOW CARD 14 D 3 Which of these types of trip have you made in the past

month? CODE ALL THAT APPLY

Travel to work/education/training Visit friends/relatives

Go to the Doctors Go to hospital appointments

Do supermarket shopping Go to ‘convenience store’ or local shops

Go to leisure activities during the day Go to leisure activities during the evening

Take children to leisure activities (e.g. music lessons, football, cinema)

None of these Don’t know

SHOW CARD 15 D 4 How easy or difficult do you usually find it travelling about

day to day? Very easy

Quite easy Neither easy nor difficult

Quite difficult Very difficult

Do not travel about day to day Don’t know

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Final questionnaire 6/7/2007 IF DIFFICULT /DO NOT TRAVEL AT D 4SHOW CARD 16

D 5 Which of these make it more difficult for you to travel around day to day? This could either be because of your <health problem/impairment/disability> or because attitudes and barriers in society make it harder for you. CODE ALL THAT APPLY IF ‘Cannot use public transport’, PROBE FOR REASONS

None of these – I have no problems travelling Cost of public transport

Issues with childcare/caring responsibilities Lack of confidence

Health problems/not well enough No public transport in my local area

Public transport not frequent enough Public transport is not safe

Public transport is not reliable Need assistance with connections during journeys

Transport staff do not understand my needs/attitude of transport staff

Attitude of other people/other travellers Cannot get on to/use public transport

Cannot get to public transport (for example taxi to train station/bus stop)

Cannot find information about public transport Cannot find information about public transport in a form that suits

my needs No access to a car

No-one to take me where I need to go/drive me where I need to go Taxis/Transport schemes will not take me to the place I want to

go/home No access to adapted transport

Need someone to accompany me on part of the journey Need someone to accompany or take me on all of the journey

Previous bad experience Other (specify)

12 of 67


ASK ALL UNLESS DO NOT TRAVEL AT D 4SHOW CARD 17

D 6 Thinking about the journeys you do regularly, do you find that you have to plan your journeys well in advance?

Yes, all of the time Yes, for over half of the journeys I make, but not all

Yes, for less than half of the journeys I make Yes, but only for a few long journeys

No, never plan well in advance It depends Don’t know

SHOW CARD 18 D 7 Can I just check, do you ever personally use any of these

services ? CODE ALL THAT APPLY

Community car (i.e. volunteer drivers using their own vehicles)

Motability (enables disabled people to obtain a car, powered wheelchair or scooter using mobility allowances)

Buggies at airports or rail stations Disabled person’s booking system (for assistance at rail stations) Shopmobility (i.e. providing wheelchairs or escorts to help people

shop and use facilities) None of these


D 8 How much do you agree or disagree with these things that other people have said about travel and transport? • I accept difficulties with travel as part of <being

disabled/having my health problem/impairment> • Improvements to public transport would make my life

better • (IF TRAVEL BY CAR DRIVEN BY FRIEND/FAMILY AT

D1) I feel bad relying on other people to get around Agree strongly Agree slightly

Neither agree nor disagree Disagree slightly

Disagree strongly Don’t know

13 of 67


E Social networks The next section of questions is about the things that you like to do and the people you see.

SHOW CARD 20 E 1 How often, if at all, do you see a relative or other adult who

doesn’t live in your household? Please exclude any contact by telephone.

Every day 2-3 times a week

At least weekly At least monthly

Less often Never

Don’t know/can’t say SHOW CARD 20

E 2 How often, if at all, do you have contact with a relative or other adult who doesn’t live in your household by phone or by email? NOTE: If respondent has a hearing impairment, this also includes contact by textphone


At least weekly At least monthly

Less often Never

Don’t know/can’t say E 3 If you had a serious personal crisis, who could you turn to

for comfort and support? CODE ALL THAT APPLY

Husband/wife/partner Other household member

Relative (outside household) Friend

Neighbour Work colleague

Voluntary or other organisation Other (specify)

No-one Would prefer not to ask for help

Don’t know

14 of 67


SHOW CARD 21 E 4 Now thinking about the activities you do, in the last month,

have you done any of these things? CODE ALL MENTIONED

Gone out with friends or family for a meal or a drink Visited family or friends at their home

Gone shopping with friends/family Gone to an evening or other education class

Gone to church, synagogue, mosque, temple or other place of worship

Gone to the cinema, theatre, concert or other social entertainment Played a game or sport, gone swimming, gone to gym, keep fit or

dancing Gone to a library

Done some gardening Done DIY

Done arts/crafts Babysat/childminded (for children other than your own)

Other activity (specify) None of these

Don’t know

15 of 67



E 5 Which of the things on this card stopped you from doing more of the activities you wanted to do? CODE ALL MENTIONED

None of these – I do all the activities I want to do Lack of time

Cost/lack of money Difficulties with childcare arrangements/caring responsibilities

Lack of confidence Health problems/not well enough

No suitable facilities locally Attitude of staff at the venue

Attitude of other people at the venue Difficulties with transport/travel to the venue

Need someone accompany me on the journey Need someone to accompany me to the activity

Difficulties getting around in the venue/venue is not accessible Lack of suitable toilet facilities at the venue

Need aids/adaptations to enable me to do it Lack of equipment (e.g. to do arts/crafts or play sports)

Cannot find information about the activity/don’t know what is available locally

Information not available in a form that suits my needs Safety/do not feel safe going out

Previous bad experience Other (specify)

None of these stopping me Don’t know

ASK ALL

E 6 Next I would like you to think about the internet. Have you ever used the internet? This could include using email, websites, instant messaging, newsgroups, chatrooms, or other use.

Yes No

Don’t know

16 of 67

Final questionnaire 6/7/2007 IF YES AT E 6, OTHERS GO TO E 10

E 7 How frequently do you use the internet nowadays?

1. Several times a day 2. Daily

3. Several times a week 4. Weekly

5. Every 2 weeks 6. Monthly

7. Every 2-3 months 8. Less frequently

9. Do not use the internet nowadays Don’t know

IF CODES 1-7 AT E 7, OTHERS GO TO E 10SHOW CARD 23

E 8 For which of these activities do you use the internet nowadays?

I work using the internet Using email

To meet new people online Using social networking sites (e.g. Bebo, Myspace, Facebook,

Friends Reunited) Using forums, chatrooms or newsgroups

Writing my own Weblog/Blog Looking at other people’s Weblogs/Blogs

Finding information about goods and services (including holidays, flights, houses)

Buying or ordering tickets/goods/services Personal banking, financial and investment activities

Looking for jobs/work Downloading software, including games

Playing or downloading music Finding information related to schoolwork or an education course

Accessing government/official services Finding out about social activities locally

Finding out more about my <disability/health problem/impairment> Share information about my <disability/health problem/impairment>

General browsing Other (specify) None of these

Don’t know

17 of 67


SHOW CARD 24 E 9 Which of these aids or adaptations do you use to help you

use the internet? None of these

Screen reader/JAWS Screen magnifier

Voice control software Adapted mouse/pointing device (e.g. roller ball, joystick head

pointer, touch monitor) Adapted keyboard

Other aid/adaptation (specify) Don’t know

ASK ALL UNLESS CODES 1-2 AT E 7SHOW CARD 25

E 10 What are the main reasons stopping you from using the internet (more)? CODE ALL THAT APPLY: IF ‘do not have a computer’ ASK FOR REASONS WHY NOT

No reason – do not want to use the internet (more)

Need aids/adaptations to enable me to use the internet Do not feel confident using the internet

Other people (e.g. parents/carer/assistant) do not want me to use the internet (more)

Worries about security/viruses Cost of buying own computer/repairs to computer

Lack of knowledge of how to install internet access at home Cost of access to the internet at home

Problems getting to other locations where I could access the internet (e.g. transport issues, need someone to go with me)

Cost of access to the internet at locations outside of home Previous bad experience

Other reason (specify) No reason

Don’t know

18 of 67

Final questionnaire 6/7/2007 ASK ALL UNLESS (DO NOT WANT TO USE THE INTERNET (MORE) AT E 10 & (NO/DON’T KNOW AT E 6 OR( CODES 8 OR 9 OR DON’T KNOW ) AT E 7) SHOW CARD 26

E 11 Here are some things that other people have said about the internet. How much do you agree or disagree with each one? • Using the internet makes me/would make me feel a lot

more independent • The internet helps me/would help me to feel less isolated • The internet helps me/would help me to find out more

about my <health problem/impairment/disability>

Agree strongly Agree slightly



ASK ALL Now thinking about some other things you might do. SHOW CARD 27

E 12 In the past 12 months, how often have you gone to a group, club or place of worship, to meet other people, to help each other out, for faith reasons, or for enjoyment and relaxation? Examples could be a spiritual group, social club, sports team, support group, community centre, drama or hobby group, etc.

Never At most three or four times a year

About every other month About once a month

Several times a month, but not every week About once a week

Several times a week Every day

Don’t know

19 of 67

Final questionnaire 6/7/2007 SHOW CARD 27

E 13 And can I just check, in the past 12 months, how often have you gone to or made contact with any groups or clubs for people with the same <health problem/impairment/ disability> as you? You could have made contact with them online, by telephone or face to face.

Never At most three or four times a year

About every other month About once a month

Several times a month, but not every week About once a week

Several times a week Every day


E 14 And in the past 12 months, how often have you given time to, or helped out at, an organisation such as a school, a hospital, a charity, a voluntary organisation or a community group? IF NECESSARY: By that I mean you have been a volunteer for one of these organisations

Never

At most three or four times a year About every other month

About once a month Several times a month, but not every week

About once a week Several times a week

Every day Don’t know

20 of 67

Final questionnaire 6/7/2007 UNLESS NEVER/DK AT E 14SHOW CARD 28

E 15 Thinking of the group(s), club(s) or organisation(s) you have been involved with in…In which, if any, of the ways, have you given UNPAID help, in the last 12 months?

Raising or handling money e.g. collections, selling raffle tickets,

selling at a jumble sale, fete or charity shop, taking part in a fundraising or sponsored event

Leading the group/member of a committee Organising or helping to run an activity or event

Visiting/befriending people Giving advice/information/counselling

Secretarial, admin or clerical work Providing transport/driving

Representing a group of people e.g. addressing meetings, leading a delegation

Campaigning e.g. lobbying, canvassing, letter writing Other practical help e.g. shopping, providing food or refreshments,

making or mending, delivering (on foot) Any other help (specify)



E 16 In the last 12 months, have you done any of these things, unpaid, for someone who does not live with you? This might be for a friend, relative, neighbour, or someone else.

Keeping in touch with someone who has difficulty getting out and

about Doing shopping, collecting pension or paying bills for someone

Cooking, cleaning, laundry, gardening or other routine household jobs for someone

Decorating, or doing any kind of home or car repairs for someone Baby sitting or caring for children

Sitting with or providing personal care for someone who is sick or frail

Looking after a property or a pet for someone who is away Giving advice to someone

Writing letters or filling in forms for someone Representing someone

Transporting or escorting someone

21 of 67

Final questionnaire 6/7/2007 Anything else (specify)


SHOW CARD 30

E 17 In the past 12 months have you taken any of the following actions in an attempt to solve a problem you feel strongly about?

Written to a local newspaper

Contacted the appropriate organisation to deal with the problem, e.g. council

Contacted a local councillor or MP Attended a public meeting or neighbourhood forum to discuss local

issues Attended a tenants’ or local residents’ group

Attended a protest meeting or joined an action group Helped organise a petition on a local issue

Anything else (specify) Thought about it but did not do anything


SHOW CARD 31 E 18 Which, if any, of these things prevents you from getting

more involved with clubs, groups or the local community? CODE ALL THAT APPLY

None of these – I do not want to be more involved Lack of time

Cost/lack of money Difficulties with childcare/caring responsibilities

Lack of confidence Health problems/not well enough

No local clubs/groups I could attend Attitude of staff at the venue

Attitude of other people at the venue/other people in the group Difficulties with transport/travel to meetings

Need someone accompany me on the journey Need someone to accompany me at the group meeting

Difficulties getting around in the meeting venue/venue is not accessible

Lack of suitable toilet facilities at the venue Need aids/adaptations to enable me to get involved

22 of 67

Final questionnaire 6/7/2007 Cannot find information about it/don’t know how to get involved

Information not available in a format that suits my needs Safety/do not feel safe going out

Previous bad experience None of these stopping me

Other (specify) Don’t know

SHOW CARD 32 IF INVOLVED IN ANY ACTIVITIES AT E 12, E 13, E 14, E 16 OR E 17

E 19 Here are some things that other people have said about getting involved in clubs, groups and their local area. Please could you tell me how much you agree or disagree with each one. • Getting involved helps me meet people I wouldn’t

otherwise have met • Getting involved helps me to feel more independent




23 of 67

Final questionnaire 6/7/2007 F Employment and work Now changing the subject, the next few questions are about employment and work

SHOW CARD 33 F 1 Which of the categories on this card best describes what

you do at the moment? CODE MAIN ACTIVITY ONLY

Working in a paid job as an employee

Working in a paid job or business on a self-employed basis (Temporarily) laid off, or on short time

Unemployed and actively seeking work On a special government training or employment scheme

Doing unpaid work for yourself or a relative A full time student or pupil

Looking after the family or home Not working because temporarily sick or injured Not working because long-term sick or disabled

Retired from paid work None of these

IF ECONOMICALLY INACTIVE AT F 1 (NOT CODES 1-3), THOSE CURRENTLY WORKING GO TO 4

F 2 Have you ever been in paid employment? Yes No

Don't know

IF YES AT F 2SHOW CARD 34

F 3 When was the last time you had paid work?

less than 3 months ago at least 3 months but less than 6 months ago

at least 6 months but less than 12 months ago at least a year but less than 2 years ago

at least 2 years but less than 5 years ago at least 5 years but less than 10 years ago

At least 10 years but less than 15 years ago 15 or more years ago

Don't know/can't remember

24 of 67


ASK ALL UNLESS (AGED 60+ AND RETIRED). OTHERS GO TO F 6

SHOW CARD 35

F 4 Has your <health problem/impairment/disability> impacted on your ability to do paid work in any of these ways? CODE ALL THAT APPLY

It has made me unable to work It has limited the kind of paid work I can do

It has limited the amount of paid work I can do None of these


F 5 And can I just check, has the kind of paid work you can or might be able to do been affected in any of these ways? This could either be because of your <health problem/impairment/disability> or because attitudes and barriers in society make it harder for you.

Unable to work full time

Causes you to be off sick for long period of time Causes you to need to take time off work/sick at short notice

Means you have to break off work several times a day for over 10 minutes at a time

Makes it more difficult for you to travel to work Means you need support to do your job (at least some of the time)

Means you need special aids or equipment to do your job Makes it difficult for you to work in certain buildings (e.g. if

particularly dusty or noisy) Makes it difficult for you to do a job involving heavy physical work

and/or lifting Need to manage stress/unable to work in stressful situations

Has other effects (specify) Has no effect on the type of paid work I can/might do

Don’t know

25 of 67

Final questionnaire 6/7/2007 ASK ALL UNLESS (NEVER WORKED/DK AT F 2 OR ONSET AT AGE 70+) SHOW CARD 37

F 6 Have you ever had to leave a job for any of these reasons connected with your <health condition/problem/disability>? CODE ALL THAT APPLY

Dismissed due to your health problem/disability Advised by your employer to resign due to your health

problem/disability Advised by your doctor to resign due to your health

problem/disability Advised by someone else to leave because of your health

problem/disability Attitude of your employer made it difficult for you to continue

working Attitude of colleagues made it difficult for you to continue working

Job role/type of job made it difficult for you to continue working Employer refused to make adaptations or adjustments to enable

you to do your job None of these

Don’t know IF ANY AT F 6SHOW CARD 38

F 7 Would it have been possible for you to have remained in this previous job/self-employed activity if any of these types of support, adaptations or adjustments to the job, the workplace, or the working arrangements had been made?

None of these Opportunity to work at home

Flexible working hours Opportunity to work in a different location/easier to get to place of

work Improved access/easier to get around in the workplace

Provision of a personal assistant/support worker Improved facilities/provision of aids/adaptations

Changes to working practices Better salary/more money

Reduced/lower levels of stress Support and understanding from employer/manager

Support and understanding from colleagues If employer/manager asked me what support, aids or adaptations I

would want Help with childcare/caring responsibilities

Flexibility for Doctor’s/hospital appointments

26 of 67

Final questionnaire 6/7/2007 Other (specify)

Not applicable: I left for reasons unconnected with my health problem/disability

Don't know

IF ANY AT F 7 F 8 And were you offered this support, adaptations or

adjustments? Yes – all

Yes – some No - none

Don't know

ASK ALL NOT CURRENTLY IN WORK AND UNLESS (AGED 60+ AND RETIRED), OTHERS GO TO ROUTING BEFORE F 10SHOW CARD 39

F 9 Are any of these things stopping you working at the moment?

Availability of jobs in the area

Issues with childcare/cannot find/afford childcare No work available

Don’t have the required skills/qualifications Better off not working/earn more from benefits

Don’t want to leave home/children Partner/other person prefers me not to work

Caring for sick/disabled relative Pregnancy

Studying/full time student Too old

Unable to cope with work at the moment I have retired from paid work

Previous bad experience Other reason (specify)


ASK F10 TO F 16 ABOUT CURRENT OR LAST PAID EMPLOYMENT (AS APPROPRIATE) UNLESS LAST PAID JOB MORE THAN 10 YEARS AGO AT F 3Could you tell me a little about your current main job/the last paid job you had.

27 of 67

Final questionnaire 6/7/2007 If you are/were self-employed, please answer about your self-employed work.

F 10 What does the firm or organisation you work(ed) for mainly make or do at the place where you work(ed)? IF MORE THAN ONE JOB, ASK ABOUT MAIN ACTIVITY IN THE JOB WHICH ACCOUNTS FOR MOST HOURS RECORD FULLY AND PROBE

SHOW CARD 40

F 11 What kind of organisation do/did you work for? A private firm or business (e.g. Limited Company, PLC)

A public sector organisation (e.g. NHS, police, local authority, civil service, armed forces, education establishment)

A charity, voluntary organisation or trust Other (specify in full) Don’t know/can’t say

SHOW CARD 41 F 12 How many employees are/were there in total at the place

where you work/ed? NOTE THIS IS IN THE WORKPLACE/ESTABLISHMENT, NOT IN THE WHOLE ORGANISATION

1-10 11-14 15-19

Don’t know but under 20 20-49

50-199 200-499

500-1999 2000 or more

Don’t know, even in broad terms

F 13 What is/was your main or usual job PROBE FULLY AND WRITE IN JOB TITLE, OCCUPATION, PROFESSION AND ANY SPECIAL QUALIFICATIONS OR EQUIPMENT NECESSARY TO DO THE JOB

28 of 67


F 14 In your main job, do/did you supervise or have managerial authority for the work of other people?

Yes No

Don’t know

F 15 Is/was your job… READ OUT

A permanent job Seasonal work

Done under contract for a fixed period/task Agency temping

Casual work Not permanent work in some other way

Don’t know

F 16 And how many hours a week do/did you work… PLEASE INCLUDE ANY PAID OR UNPAID OVERTIME

Up to 10 hours a week

10-15 hours a week 16-23 hours a week 24-29 hours a week

30 or more hours a week Don’t know

UNLESS AGED 60+ AND RETIRED, OTHERS GO TO F 18I am interested in finding out what, if anything might help you to <go into paid work/return to paid work/have more choice of the work you do>. SHOW CARD 42

F 17 Which of the things on this card would help you to <go into paid work/return to paid work/have more choice of the work you do>?

Opportunity to work at home Flexible working hours

Opportunity to work in a different location/easier to get to place of work

Improved access/easier to get around in the workplace Provision of a personal assistant/support worker

29 of 67

Final questionnaire 6/7/2007 Improved facilities/provision of aids/adaptations

Changes to working practices Better salary/more money

Reduced/lower levels of stress Support and understanding from employer/manager

Support and understanding from colleagues If employer/manager asked me what support, aids or adaptations I

would want Help with childcare/caring responsibilities

Flexibility for Doctor’s/hospital appointments Other (specify)

None of these: I have enough choice None of these: I don’t want to work

Other (specify) Don't know / Can't say

ASK ALL WHERE ONSET OF DISABILITY BEFORE AGE 70 AT B 2 , OTHERS GO TO F 20

F 18 Can I just check, do you think that you have ever applied for a job and not got it because of your <health problem/impairment/disability> or because of barriers or attitudes in society?

Yes – definitely Yes - probably

No – this has never happened No – I have never applied for a job

Not applicable – I didn’t have my health condition Don’t know

IF YES AT F 18

F 19 And to what extent, if at all, did this put you off applying for other jobs after that? Did it put you off …

A lot A bit

Not at all Don’t know

30 of 67

Final questionnaire 6/7/2007 ASK ALL CURRENTLY IN WORK SHOW CARD 43

F 20 Here are some things that other people have said about work. To what extent do you agree or disagree with each one in relation to your own reasons for working. • Work gives me financial independence • Work keeps me active • Work makes me feel like I am contributing to society • Work enables me to meet other people • Work is just a means of earning a living




ASK ALL NOT CURRENTLY IN WORK UNLESS AGED 60+ AND RETIRED

SHOW CARD 43F 21 Here are some things that other people have said about

work. How much do you agree or disagree with each one? • Work would give me financial independence • Work would keep me active • Work would make me feel like I am contributing to

society • Work would enable me to meet other people




31 of 67


G Income/benefits Our research also aims to look at how people are getting by financially these days. We have found that we need to ask about a number of different types of income because otherwise our results could be misleading. I'd like to remind you that anything you tell me is completely confidential and will not affect your household’s benefits in any way at all.


G 1 This card shows possible sources of income. Can I ask you what sources of income your household receives. Please consider the income of all household members and any income received by the household as a whole. CODE ALL THAT APPLY

Earnings from employment or self employment (including any

bonuses) Earnings from casual work/one-off payments

Pension from a former employer/spouse’s former employer State Retirement Pension

Widow or War Widow’s Pension State benefits or Tax Credits (e.g. incapacity benefits, child benefit,

income support) Interest or other income from savings or investments

Rent from property Maintenance payments/Alimony

Direct payments (payment from local authority/council to pay for help and support)

Grants from government organisations/local council Grants from other organisations (e.g. charitable organisation)

Loans taken out Gifts/money from friends/family members not living in this

household Rent from boarders or lodgers

Other source (specify) No source of income

Don’t know Prefer not to answer

32 of 67



G 2 Thinking of the income of the household as a whole, which of the groups on this card represents the total income of the whole household, before deductions for income tax, National Insurance etc.

Weekly Monthly Annual H Less than £50 Less than £216 Less than £2600

D £51 less than £100 £216 less than £433 £2600 less than £5200

J £100 less than £200 £433 less than £866 £5,200 less than £10,400

B £200 less than £300 £866 less than £1,300 £10,400 less than £15,600

F £300 less than £400 £1,300 less than £1,733 £15,600 less than £20,800

E £400 less than £650 £1,733 less than £2,816 £20,800 less than £33,800

I £650 less than £788 £2,816 less than £3,417 £33,800 less than £41,000

A £788 less than £885 £3,4167 less than £3,833 £41,000 less than £46,000

K £885 less than £1,154 £3,833 less than £5,000 £46,000 less than £60,000

G £1,154 less than £1,538 £5,000 less than £6,667 £60,000 less than £80,000

C £1,538 or more £6,667 or more £80,000 or more


IF STATE BENEFITS/TAX CREDITS MENTIONED AT G 1SHOW CARD 46

G 3 I would like to know about any benefits your household receives. Does anyone in this household receive any of the benefits or tax credits on this card at the moment? CODE ALL THAT APPLY

Incapacity benefit Income Support

Housing or Council Tax Benefit Severe Disablement Allowance

Disability Living Allowance Attendance Allowance

Carer’s Allowance Invalid Care Allowance

Industrial Injuries Disablement Allowance Statutory Sick Pay

33 of 67

Final questionnaire 6/7/2007 National Insurance credits for incapacity

Another sickness or disability benefit Jobseeker's Allowance

Child Benefit Child Tax Credit/ Children's Tax Credit

Working Tax Credit/ Working Families' Tax Credit/ Disabled Person's Tax Credit

Pension Credit War Pension/War Disability Pension


Prefer not to answer

The next few questions are about money and lifestyle. SHOW CARD 47

G 4 Which of the phrases on the card best describes how your household are getting along financially nowadays?

I/we manage very well I/we manage quite well

I/we get by alright I/we have some financial difficulties

I/we have severe financial difficulties Don’t know


34 of 67

Final questionnaire 6/7/2007 ASK ALL WHO HAVE FINANCIAL DIFFICULTIES AT G 4SHOW CARD 48

G 5 People can have financial difficulties for a number of reasons. Please take a look at this card and tell me which of these reasons describe why your household finds it difficult to manage nowadays. CODE ALL MENTIONED

Loss of income due to sickness or disability

Loss of income due to taking up caring responsibilities Loss of income due to redundancy

Loss of income due to relationship breakdown Problems with benefits

Other loss of income Repayment of over-paid tax credits

Low income Over-commitment

Increased/unexpected expenses Overlooked or withheld payment

Third party error Long term debts

Debts left by former partner Am not allowed to work because of immigration/asylum status

Higher costs because of my health problem, impairment or disability

Other reason (specify) No particular reason

Don’t know

35 of 67

Final questionnaire 6/7/2007 ASK ALL WHO HAVE FINANCIAL DIFFICULTIES AT G 4SHOW CARD 49

G 6 Thinking generally, does your financial situation have any of these impacts on you or your household? CODE ALL THAT APPLY

Stress/anxiety

Unable to afford essentials Unable to afford non-essentials

Adverse effect on relationship Adverse effect on mental health

Unhappiness/anger Adverse effect on physical health

Other impact (specify) None of these



G 7 Can I just check, have you or your household had your benefits stopped or substantially reduced over the past 5 years for any of these reasons? CODE ALL THAT APPLY

Because I/someone in my household had started paid work

Because I/someone in my household was receiving income from other sources

Because a partner had moved in Because a dependent child had left home

Following an assessment of my/their health/ability to work Yes – for some other reason (specify)

No – not at all Don’t know


36 of 67

Final questionnaire 6/7/2007 IF BENEFITS STOPPED OR REDUCED AT G 7SHOW CARD 51

G 8 Which of these best describes your view at the time your benefits were stopped or reduced? CODE ONE ONLY

I was not expecting these benefits to be stopped/reduced at all I was expecting some reduction in benefits, but not by the amount

they were reduced I was expecting these benefits to be reduced by the amount by

which they were reduced/stopped altogether Other (specify) None of these


G 9 When your benefits were stopped or reduced, how was your total household income affected?

Reduced by up to a quarter Reduced by more than a quarter, up to a half

Reduced by more than a half, up to three quarters Reduced by more than three quarters

We had no income during this time Don’t know

Prefer not to say

SHOW CARD 53 G 10 And during this time how did your household manage

financially? I/We managed very well

I/We managed quite well I/We got by alright

I/We had some financial difficulties I/We had severe financial difficulties


37 of 67


G 11 And at that time, did your financial situation have any of these impacts on you or your household CODE ALL THAT APPLY

Stress/anxiety

Unable to afford essentials Unable to afford non-essentials

Adverse effect on relationship Adverse effect on mental health

Unhappiness/anger Adverse effect on physical health

Other impact (specify) None of these


IF BENEFITS STOPPED/REDUCED FOLLOWING HEALTH ASSESSMENT AT G 7SHOW CARD 55

G 12 You mentioned earlier that benefits were stopped or reduced following an assessment of health or ability to work. Which of these people made the assessment? CODE ALL THAT APPLY

Own GP

Hospital doctor who respondent/person was already in contact with Independent GP/other doctor (not previously known to the

respondent/other person) Occupational Therapist

Social worker Other person (specify)

Don’t know Prefer not to say

38 of 67



G 13 So looking to the future, how concerned are you about your financial situation over the next few years?

Very concerned

Quite concerned Not very concerned Not concerned at all


G 14 I am going to read out some things that other people have said about money and income. How much do you agree or disagree with each one?




ASK OF PEOPLE WHO HAVE FINANCIAL DIFFICULTIES AT G 4• My financial situation has stopped me getting the help or

support I need • My financial situation has meant that I have fewer choices

in life ASK ALL • I accept that I will have a lower income as part of <being

disabled/having my health problem/impairment> IF ON BENEFITS AT G 1• I am treated with dignity and respect when dealing with

organisations administering benefits

39 of 67


G 15 Some people who are disabled or with long term health problems or impairments feel that their cost of living is more expensive. In your experience, which, if any, of these do you think are more expensive for you compared with non-disabled people? CODE ALL MENTIONED

Housing costs/rent/mortgage Additional fuel/heating costs

Need to pay for aids/adaptations to home Need to pay for help/support

Need to pay for medical treatment/prescriptions Need to pay for special food/drinks

Need to do more laundry than other people Transport costs are higher

Other additional costs (specify) None – do not incur additional expenses

Don’t know Prefer not to say

40 of 67


H Health This section of the questionnaire asks you about your health and health services. We have already spoken a little about your health, but I have a few more questions to help me understand a little more about it. As with the rest of this interview, your responses will be treated as completely confidential.

ASK ALL

H 1 Over the last 12 months, would you say your general health

has on the whole been….. READ OUT

Good Fairly good

Or not good (Don’t know)

H 2 And compared to your general level of health over the last

12 months, is your general health today… READ OUT

Better Much the same

Or worse (Don’t know)

Now thinking about your <health problem/impairment/disability>…. H 3 Would you describe the <health problem/impairment/

disability>(s) you have mentioned as progressive, by which I mean it is likely to develop or get worse over time?

Yes No

Don’t know

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H 4 Thinking about the substantial effects of your current <health problem/impairment/disability> on your day to day activities… NOTE: this refers to the effects of the health problem on the respondent’s ability to carry out their day to day activities. If the respondent has more than one health problem, please ask them to think about the effects of all their health problems when taken together. READ OUT

Are they there all of the time Do they vary according to the time of day or time of year

Or they come and go from time to time (Don’t know )

Next I would like you to think about health services.

SHOW CARD 59 H 5 Which of the health services on this card have you

personally used in the past 3 months? CODE ALL MENTIONED

GP Practice nurse

Outpatients/day patient appointment Been admitted as an inpatient

Visit to A&E/Casualty Visit from a district nurse

Physiotherapy Occupational therapy

Optician Chiropody

Psychiatrist/psychologist Counsellor/therapist

Community Psychiatric Nurse Self-help group Other (specify) None of these

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Final questionnaire 6/7/2007 IF ANY AT H 5SHOW CARD 60

H 6 In the last 3 months, how often have you visited or used any of the services we have just talked about? NOTE: THIS REFERS TO ALL SERVICES USED IN THE PAST THREE MONTHS


About once a week About once every 2 weeks About once every 3 weeks Once or twice every month

Once or twice every 2 months Once or twice every three months

Less often Don’t know/can’t say


H 7 Thinking about the health services you have used recently, <if none at H 5: , even if you haven’t used them in the last 3 months, > can you tell me how satisfied you are with each of these: • How friendly, helpful and understanding the staff were • How knowledgeable the doctors/ nurses/ other health care

professionals were • The location where the services are provided (e.g. how

easy it is to get to) • Whether you were treated with dignity and respect • Whether you had a choice of who you saw • Whether you had a choice of when the appointments took

place • How much say you had over your treatment or therapy

Very satisfied Quite satisfied

Neither satisfied nor dissatisfied Quite dissatisfied Very dissatisfied

Don’t know

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H 8 Which if any of these make it harder for you to get the most from any of the health services we have been talking about?

None of these Lack of time

Cost/lack of money Difficulties with childcare /other caring responsibilities

Lack of confidence Distance to premises

Difficulties with transport/travel to appointments Difficulties getting around in the premises

clinic/health centre/hospital is not accessible Lack of suitable toilet facilities at the premises

Attitude of staff at the premises Attitude of other people at the premises

Need someone accompany me on the journey Need someone to accompany me at the appointment

Safety/do not feel safe going out Cannot find information about it/don’t know how to access the

health services Information not available in a format that meets my needs

Don’t know what services are available Inconvenient appointment times

Poor communication between health professionals Lack of continuity of care/not seeing the same person each time

Cannot find an NHS Dentist/GP/Service I have been removed from GP/Dentist/other health professional list

Negative previous experience Other (specify)

Don’t know

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Final questionnaire 6/7/2007 Next I would like you to think about information and advice about your <health problem/impairment/disability>

SHOW CARD 63 H 9 Thinking generally, how satisfied are you with the

information you receive from health professionals about your <health problem/impairment/disability>?

Very satisfied Quite satisfied

Neither satisfied nor dissatisfied Quite dissatisfied Very dissatisfied

I wasn’t given any information Don’t know

IF DISSATISFIED AT ERROR! REFERENCE SOURCE NOT FOUND.

H 10 You said that you were not satisfied with the information and advice you receive. Why is that? DO NOT PROMPT CODE ALL MENTIONED

No information available at all

Information not available in a form that suits my needs Information not detailed enough

Information out of date Language not accessible( too technical/too much jargon)

Person wasn’t sympathetic Insufficient time to ask questions

Lack of privacy Information not delivered at right time

Too much detail given Not enough information given about what you can do to help

yourself Other (specify)

Don’t know

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I Education and qualifications The next few questions are about training, education and qualifications.

I 1 How old were you when you finished continuous full-time

education? RECORD AGE IN YEARS, AN ESTIMATE IS ACCEPTABLE. RANGE FROM 10-115

Enter age Still studying

Don’t know

IF ‘STILL STUDYING’ CODED BUT NOT CODED ‘A FULL TIME STUDENT’ (G1(7))

I 1a You told me earlier that you are <answer from G1>, but that you are also still in full time education. Is this right?

Yes – continue No – not <answer from G1> - GO BACK TO G1 AND CHANGE

ANSWER No – not still studying ROUTE BACK TO I1

IF ONSET OF DISABILITY BEFORE AGE 16 AT B 2I’d like to ask you about the schools you went to. SHOW CARD 64

I 2 Which types of schools did you go to. Please think about both primary and secondary schools. READ OUT, CODE ALL THAT APPLY

Mainstream school with no special provision for people with health problems or disabilities

Mainstream school with special provision School where you don’t know if they had special provision

Specialist school (e.g. for children with visual impairments) Other (specify)

Don’t know

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Final questionnaire 6/7/2007 ASK ALL AGED UNDER 35 SHOW CARD 65

I 3 How much of a say did your family have over which schools you attended?

It was entirely our choice We had a say, but it wasn’t our choice

We had no say at all Don’t know


I 4 Overall, how would you describe your experience of education up to the age of 16? READ OUT

Very good Fairly good

Neither good nor bad Fairly bad Very bad

Don’t know

IF BAD AT I 4I 5 In what ways was your experience of school bad?

DO NOT PROMPT: CODE ALL THAT APPLY Attitude of staff at school/staff were not helpful/understanding

Staff did not know/understand enough about my impairment Attitude of other pupils at school/not helpful/understanding

Was not able to do subjects I wanted Bullied at school

Journey into school difficult/problems with journey to school Not able to take part in activities (e.g. games, physical education,

go on school trips) Was bored/just didn’t enjoy school



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Final questionnaire 6/7/2007 ASK ALL SHOW CARD 67

I 6 And how well do you think your education up to the age of 16 prepared you for the future? Did it prepare you… READ OUT

Very well Quite well

Not very well Not well at all

Don’t know IF STILL STUDYING AT I 1SHOW CARD 68

I 7 In which of these types of educational establishments have you continued your full time education? CODE ALL THAT APPLY

6th form Secondary school - no special provision

6th form Secondary school - with special provision 6th form Secondary school - DK if had special provision

Specialist School – (e.g. for visually impaired people) Further Education/6th Form College - no special provision Further Education/6th Form College - with spec. provision

Further Education/6th Form College - DK if had special provision Specialist College at Further Education Level - (e.g. for blind

people) University, Polytechnic, Higher Education Institute


IF AGED UNDER 35 SHOW CARD 69

I 8 In five years’ time what do you think you will be doing? CODE ALL THAT APPLY

Studying at college or university

Working in a profession (e.g. doctor, accountant) Working in an office

Working in a skilled trade (e.g. electrician, plumber) Other work (e.g. working in a shop, factory, building site)

Staying at home with family/children Something else (specify)

(Spontaneous) Do not think I will be here Don’t know/not sure

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Final questionnaire 6/7/2007 IF NO LONGER STUDYING AT I 1SHOW CARD 70

I 9 Did you continue full time education beyond the age of 16 in any of these? CODE ALL THAT APPLY

Did no post 16 education 6th form Secondary school - no special provision

6th form Secondary school - with special provision 6th form Secondary school - DK if had special provision

Specialist School – (e.g. for visually impaired people) Further Education/6th Form College - no special provision Further Education/6th Form College - with spec. provision

Further Education/6th Form College - DK if had special provision Specialist College at Further Education Level - (e.g. for blind

people) University, Polytechnic, Higher Education Institute


ASK ALL I 10 Do you have any qualifications from school or college, or

connected with work or a Government Scheme? Yes No

Don't know

IF YES AT I 10SHOW CARD 71

I 11 Which qualifications do you have? NOTE: IF UNCERTAIN, ASK WHICH THEY THINK THEY HAVE. CODE FIRST/HIGHEST WHICH APPLIES. IF OTHER, PLEASE ENTER FULL DETAILS TO ENABLE US TO ACCURATELY CODE IF NECESSARY: read from the top and tell me the first on the list that applies.

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1 Any of these qualifications • Doctorate • Masters • Postgraduate Diploma • Postgraduate Certificate

2 Any of these qualifications • First degree • PGCE • HND • NVQ/SVQ Level 4 • SCOTVEC Higher

3 Any of these qualifications • 2 or more A levels • 4 or more AS levels • 3 or more Scottish Highers • GNVQ/GSVQ Advanced • BTEC National Diploma • NVQ/SVQ Level 3 • SCOTVEC National • Completed Trade Apprenticeship

4 Any of these qualifications: • 5 or more GCSEs/O levels at grades A*-C or CSEs at grade 1 • 1 A level • 3 or fewer AS levels • 1 or 2 Scottish Highers • GNVQ/GSVQ Intermediate level • BTEC Intermediate or Diploma • NVQ/SVQ Level 2 • SCOTVEC Diploma

5 Any of these qualifications: • Any GCSEs/O levels, but fewer than 5 at grades A*-C • 2 CSEs or less • GNVQ /GSVQ Foundation level • BTEC First • SCOTVEC cert • NVQ/SVQ Level 1 • Key Skills or Basic Skills qualifications

6 None/no educational qualifications Any other qualification (specify) Don’t know

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Final questionnaire 6/7/2007 ASK ALL UNLESS AGED 60+ AND RETIRED SHOW CARD 72

I 12 Are you currently participating in any of these Government or other special training or employment programmes? CODE ALL THAT APPLY.

Youth training/modern apprenticeships Work Based Learning for Adults (WBLA)

Training for Work scheme Work trials

Work preparation Job introduction scheme

New Deal - other than for disabled people New Deal for disabled people



I 13 <(if in full time education) Other than the full time education you have told me about> Do you do any of the following nowadays on a regular basis? CODE ALL THAT APPLY

Courses, classes or tuition intended to lead to a qualification

Courses, classes or tuition not intended to lead to a qualification Other learning activities which are not part of an organised course

Neither of these Don’t know

IF COURSE WILL LEAD TO A QUALIFICATION AT I 13SHOW CARD 74

I 14 Which qualification are you working towards?

List as at I 11

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Final questionnaire 6/7/2007 ASK ALL NOT CURRENTLY UNDERTAKING ANY LEARNING

I 15 Can I just check, would you like to take part in more education or training or do any classes or courses?

Yes No

Not really thought about it Don’t know

IF YES AT I 15SHOW CARD 75

I 16 Which of the things on this card have stopped you from taking part in more education or training? This could either be because of your <health impairment/problem/ disability> or because attitudes and barriers in society make it harder for you? CODE ALL MENTIONED None – I don’t want to take part in more education or training

If I could study at home Find it difficult to concentrate

Lack of time Cost/lack of money

Difficulties with childcare arrangements/caring responsibilities Lack of confidence

Health problems/not well enough No suitable facilities locally

Attitude of staff at the venue Attitude of other people at the venue

Staff do not know/understand enough about my impairment Difficulties with transport/travel to the venue

Need someone accompany me on the journey Need someone to accompany me to the activity

Difficulties getting around in the venue/venue is not accessible Lack of suitable toilet facilities at the venue

Need aids/adaptations to enable me to do this Lack of equipment

Cannot find information about education/training /don’t know what is available locally

Cannot find information in a format that suits my needs Safety/do not feel safe going out

Previous bad experience The course/training I want to do is not available

Other (specify) None of these stopping me

Don’t know

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I 17 Here are some things that other people have said about learning and education. How much do you agree or disagree with each one?




IF CURRENTLY UNDERTAKING LEARNING • I do the course/class because it keeps me active • I do the course/class because I enjoy it • (IF NOT WORKING AND NOT AGED 60+ AND

RETIRED) It will help me get (back) into work • (IF CURRENTLY WORKING) It helps me get on better

at work IF NOT CURRENTLY UNDERTAKING LEARNING AND YES AT I15 • A course or class would keep me active • I would enjoy doing a course or class • (IF NOT WORKING AND NOT AGED 60+ AND

RETIRED) A course or class would help me get (back) into work

• (IF CURRENTLY WORKING) A course or class would help me get on better at work

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J Sources of information The next few questions are about where you get information on different subjects.

SHOW CARD 77 J 1 Please take a look at this list of people and organisations.

From which of them would you prefer to get information about these different subjects? CODE ALL THAT APPLY • Information about your <health problem/impairment/

disability> • Which benefits and financial support you are entitled to • Which other support you are entitled to

GP/ Practice nurse Doctor or nurse at a hospital

Other therapist (e.g. occupational therapist) Other health professional (e.g. dentist, pharmacist) Charity/organisation/ group relevant to my <health

problem/impairment/disability> Support group

Citizens Advice Bureau (CAB) Job Centre Plus

Department for Work and Pensions (DWP) Pension Service

Social Services/Adult Services Friends/family

Other (specify) I have all the information I need/don’t want any (more) information

None of these people or organisations Don’t know

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SHOW CARD 78 J 2 And in general, in which of these formats would you prefer

to receive this information? CODE ALL THAT APPLY

Face to face/meeting/speaking with people Telephone

Internet –Organisations relevant to my <health problem/impairment/disability>

Internet – forums/ chat rooms or news groups Internet – Other sites

Books/Magazines/ Newspapers Leaflets

Interactive TV (red button on digital TV channels)/Ceefax Radio

Other (specify) None of these ways

Don’t know

55 of 67

Final questionnaire 6/7/2007 K About the DDA This section of the questionnaire looks at issues around discrimination and how people are treated in society.


K 1 Have you personally ever felt that you have been treated unfairly or discriminated against for any of the reasons shown on this card? You can just read out the letter that matches the answer or answers you want to give. CODE ALL THAT APPLY

H: Because of your age

L: Because of your gender (i.e. because you are a man or woman) Q: Because of your ethnic background

S: Because of your religion or faith A: Because of your health problem, impairment or disability

F: Because you are gay, lesbian, bisexual or transgender (if this applies)

For another reason (specify) No I haven’t experienced any discrimination or been treated

unfairly Don’t know

IF DISABILITY DISCRIMINATION MENTIONED AT K 1 SHOW CARD 80

K 2 And when you felt that you were discriminated against or treated unfairly because of your <health problem/impairment/disability>, what was this in relation to?

Work or employment (either a job you already had, or a job you were applying for)

Buying or getting information on goods or services (for example buying things in a shop, using leisure facilities)

Using/joining private clubs In relation to benefits

Using other public services (e.g. health services, social services) Your home/where you live (e.g. getting housing, problems with

housing) Transport and getting around

Learning, education or training While out and about

Something else (specify)

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Final questionnaire 6/7/2007 Don’t know

IF ANY AT K 2

K 3 Could you tell me a little about what happened when you felt that you were discriminated against or treated unfairly? If this has happened more than once, please tell me about the last time this happened to you?

Open ended Don’t know


ASK ALL K 4 So, can I just check. Have you ever experienced any

difficulties accessing goods or services? This could include, for example, getting into shops, being offered a lower level of service in banks, or being refused entry to a cinema or restaurant. This could either be because of your <health problem/impairment/disability> or because of attitudes and barriers in society

Yes No

Don’t know

IF YES AT K 4 SHOW CARD 81

K 5 Which of the things on this card best describe the difficulties you had? If this has happened more than once, please tell me about the last time this happened to you. CODE ALL THAT APPLY

Getting information in a suitable format (e.g. Braille, large print, easy read)

Getting there Getting into the place Getting around inside

Understanding/making myself understood Lack of facilities (e.g. parking spaces, special shopping trolleys,

accessible toilet) Lack of privacy Refused entry

Refused service Asked to leave

Received a lower standard of service than other customers Verbal or physical abuse

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Final questionnaire 6/7/2007 Other difficulties (specify)



K 6 As a result of this experience, did you complain or say something to the provider of the service or their staff, or did someone else say something?

Yes – made a complaint Yes – mentioned, but did not complain

No – did not mention at all Don’t know

IF MADE A COMPLAINT AT K 6SHOW CARD 82

K 7 Did any of these things happen as a result? CODE ALL THAT APPLY

The complaint was settled at the time and no further action was taken

The complaint was dealt with by the organisation (e.g. shop, council)

The complaint was dealt with by an Ombudsman or similar body The complaint was dealt with through mediation

The complaint was taken to court Other (specify) None of these

Don’t know

IF ANY MENTIONED AT K 4K 8 And can I just check, have you been able to use the service

since then? Yes – able to use the service

No – unable to use the service No – haven’t tried

Don’t know

IF NO, HAVEN’T TRIED AT K 8K 9 Is this because…

READ OUT You have not needed to use the service again

You have found another provider of this service You have not tried to use this service again because of what

happened

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Final questionnaire 6/7/2007 None of these

Don’t know

ASK ALL K 10 Can you think of any rules, laws or regulations which stop

people from treating people with health problems or disabilities unfairly? DO NOT PROMPT

Disability Discrimination Act/DDA (only code if specifically mentioned)

Other (specify) Think there is one, but don’t know the name

Don’t think there is one Don’t know

IF DDA NOT MENTIONED AT K 10

K 11 Have you ever heard of the Disability Discrimination Act? Yes No

Don’t know

IF NO AT K 11SHOW CARD 83 Please could you take a look at this card. (READ OUT)The Disability Discrimination Act aims to prevent discrimination against disabled people and gives disabled people rights areas such as employment, education, access to goods, facilities and services and housing. The Act also allows the government to set some standards so that disabled people can use public transport easily.

K 12 Can I just check, even though you had not heard of the Act,

were you aware before this interview that there were any laws on this issue.

Yes No

Don’t know

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Final questionnaire 6/7/2007 ASK ALL

K 13 Can I just check, do you think that you personally have rights under the Disability Discrimination Act?

Yes No

Don’t know IF NO

K 14 Why do you say that? IF OTHER PROBE FULLY AND RECORD ANSWERS VERBATIM DO NOT PROMPT

I am not disabled I am not ill (enough)


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Final questionnaire 6/7/2007 L Quality of life and closing demographics

This is the last section of the questionnaire, and contains just a few final questions about you and your day to day life SHOW CARD 84

L 1 So, thinking about your life as a whole, would you say that it is…

So good, it could not be better Very good

Good Alright

Bad Very bad

So bad, it could not be worse Don’t know

Prefer not to answer SHOW CARD 85

L 2 Thinking generally, do you think that you … • Have done the things you want to in life • Have enough control over what happens in your life • Have enough privacy in your day to day life • Are treated with dignity and respect

Always Usually

Sometimes Not very often

Never Don’t know


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SHOW CARD 86 L 3 Thinking about your day-to-day life, which of the statements

on this card would you say you most agree with? READ OUT AS NECESSARY: If you do not currently have a health problem or disability, but had one in the past, please tell me which statement you think applied to the situation at that time.

My health problem or disability has no impact on my ability to lead

a full life I cannot lead a full life due to my health problem/disability

I cannot lead a full life due to my health problem/disability AND because attitudes and barriers in society prevent me from doing so

I cannot lead a full life because attitudes and barriers in society prevent me from doing so

Don't Know/Can't say Just a few final questions about your household.

SHOW CARD 87 L 4 To which of these groups do you consider you belong?

A White. British

Irish Any other White background

B Mixed White and Black Caribbean White and Black African White and Asian Any other Mixed background

C Asian or Asian British Indian Pakistani Bangladeshi Any other Asian background

D Black or Black British Caribbean African Any other Black background

E Chinese or other ethnic group Chinese Any other (specify).


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Final questionnaire 6/7/2007 ASK ALL

L 5 Is English your first/main language?

Yes No

Don’t know IF YES - ANY AT S7 SHOWCARD 88

L5a And can I just check, which of the conditions on the card have you ever been diagnosed with?

HIV Cancer

MS Prefer not to answer

ASK ONLY IF THE ANSWER TO A3 IS ‘1’ OR MORE. IF A3 IS ‘0’ GO TO L28 ESTABLISH WHO IS THE HRP AND ASSESS NS SEC

L 6 I’d now like to ask you about what we called the Household Reference Person - that is the person in whose name this home is owned or rented (IF JOINTLY OWNED OR RENTED, ASK ABOUT THE PERSON WITH THE HIGHEST INCOME. IF BOTH HAVE SAME INCOME, ASK ABOUT THE PERSON WHO IS THE OLDEST).

HRP is respondent HRP is someone else (record who using scale at A 4)

IF HRP IS SOMEONE OTHER THAN RESPONDENT CONTINUE. IF HRP IS RESPONDENT, GO TO L 28

L 7 Did he/she do any paid work in the 7 days ending last Sunday, either as an employee or as self-employed?

Yes – go to L 17No – ask L 8

L 8 Were they on a government scheme for employment

training? Yes – GO TO L 15

No – ASK L 9 L 9 Did they have a job or business they were away from?

Yes – GO TO L 17

No – ASK L 10

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Final questionnaire 6/7/2007 Waiting to take up new job/business already obtained – ASK L

10

L 10 Did they do any UNPAID work for any business that they own in the 7 days ending last Sunday?

Yes – GO TO L 15

No – ASK L 11 L 11 Or did they do any UNPAID work for any business that a

relative owns? NOTE: INCLUDE SPOUSE/COHABITEE

Yes – GO TO L 15

No – ASK L 12

L 12 Thinking of the FOUR WEEKS ending last Sunday, were they looking for any kind of paid work or a place on a government training scheme at any time in those 4 weeks?

Yes – ASK L 13

No – GO TO L 14Waiting to take up new job/business already obtained – GO TO L

16

L 13 If a job or a place on a government training scheme had been available last week, would they have been able to start within 2 weeks?

Yes – GO TO L 16No – ASK L 14

L 14 What was the MAIN reason [they did not look for work in the

last 4 weeks/they would not have been able to start work within 2 weeks]?

Student – GO TO L 16

Looking after the family/home – GO TO L 16Temporarily sick or injured – GO TO L 16Long term sick or disabled - GO TO L 16

Retired from paid work – GO TO L 16Other reasons – GO TO L 16

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Final questionnaire 6/7/2007 L 15 Can I just check, are they a full-time student at college or

university? Yes – thank and close

No – ask L 16

ASK ALL WHO SAID YES AT L 10 AND NO AT L 15ASK ALL WHO SAID YES AT L 11 AND NO AT M 13 ASK ALL WHO SAID WAITING TO TAKE UP A NEW JOB AT L 9ASK ALL WHO SAID YES AT L 13ASK ALL WHO ANSWERED L 14

L 16 Have they EVER had a paid job, apart from casual or holiday work?

Yes – ASK L 17

No – THANK AND CLOSE

L 17 What [does/did] the firm/organisation they [work/worked] for mainly make or do at the place where they [work/worked]?

DESCRIBE FULLY – PROBE MANUFACTURING OR PROCESSING OR DISTRIBUTING AND MAIN GOODS PRODUCED OR SERVICES PROVIDED

L 18 What was their [(main) job in the week ending last Sunday/last (main) job]?

ENTER FULL JOB TITLE

L 19 What [do/did] they mainly do in their job?

CHECK SPECIAL QUALIFICATIONS/TRAINING NEEDED TO DO

THE JOB

L 20 [Are/Were] they working as an employee or [are/were] they self-employed?

Employee – ASK L 21Self-employed – GO TO L 25

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Final questionnaire 6/7/2007 L 21 In their job [do/did] they have formal responsibility for

supervising the work of other employees? Yes No

L 22 [Do/Did] they have any managerial duties? Manager

Foreman/supervisor Not manager/supervisor

L 23 How many employees [are/were] there at the place where

they [work/worked]? 1-2 – GO TO L 27

3-24 – GO TO L 2725-99 – GO TO L 27

100-499 – GO TO L 27500-999 – GO TO L 27

1000 or more – GO TO L 27Don’t know – ASK L 24

L 24 Would you say there [are/were] less than or more than 25 employees?

Less than 25 More than 25

EMPLOYEES GO TO L 27L 25 How many people [do/did] they employ at the place where

they [work/worked]? None – GO TO L 27

1-2 – GO TO L 273-24 – GO TO L 27

25-99 – GO TO L 27100-499 – GO TO L 27500-999 – GO TO L 27

1000 or more – GO TO L 27Don’t know – ASK L 26

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Final questionnaire 6/7/2007 L 26 Would you say there [are/were] less than or more than 25

employees? Less than 25 More than 25

L 27 In their (main) job [are/were] they working.... READ OUT

Full-time Or part-time

READ OUT

L 28 We may want to contact some people again to ask them some more questions about their experiences. Would you be willing to be contacted again to answer some more questions on this subject?

Yes – willing No – not willing

Don’t know On behalf of GfK NOP and the Office for Disability Issues, thank you very much for answering our questions.

HAND OVER GREEN INFORMATION SHEET L 29 (DO NOT ASK) Interviewer to note who conducted

interview Respondent alone

Respondent with help from someone else Proxy interview with input from respondent

Proxy interview with no input from respondent Other (specify in full)

IF OTHER PERSON INVOLVED IN INTERVIEW

L 30 (DO NOT ASK) Code who the other person is List as A 4

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MAIN SHOWCARDS

GFK NOP PROJECT NUMBER 451143

EEDP

JULY/AUGUST 2007

SHOW CARD 0

16-18

19-24

25-34

35-44

45-54

55-59

60-64

65-69

70-74

75-84

85+

SHOW CARD 1

What is their relationship to you?

1. Spouse/partner

2. Parent (including in law or step parent)

3. Grandparent (including in law or step)

4. Son/daughter (including in law, adopted, step or foster)

5. Brother/sister (including in law, adopted, step or foster)

6. Other relative

7. Friend

8. Personal Assistant/paid carer

Other (please tell interviewer)

SHOW CARD 2

In which of these ways does your household occupy this accommodation?

1. Own it outright

2. Buying it with the help of a mortgage or a loan

3. Pay part rent and part mortgage (shared ownership)

4. Rented from local authority/Council/New Town Development

5. Rented from Housing Association/Co-operative/Charitable Trust

6. Rented (furnished) from private landlord

7. Rented (unfurnished) from private landlord

8. Tied to job

9. Live here rent free (inc. rent free in relative’s/friend’s property)

10. Squatting


SHOW CARD 2A

How old were you when your health problem, impairment or disability start to substantially limit your ability to carry out normal day to day activities?

At birth

In first year of life

Aged 2-5

Aged 6-9

Aged 10-15

Aged 16-19

Aged 20-29

Aged 30-39

Aged 40-49

Aged 50-59

Aged 60-64

Aged 65-69

Aged 70-79

Aged 80 or over

SHOW CARD 3

Aids to mobility/dexterity Aids for people with visual impairments

1. Walking stick or walking frame 2. Wheelchair 3. Disabled/allocated parking space 4. Ramp 5. Grab rail(s) 6. Alterations for better access (e.g. wider doors

and door frames) 7. All the rooms you need on one level/no

steps/step-free access 8. Hoist 9. Stair lift 10. Aid/adaptations to help with washing/bathing

(e.g. bath board, changes to design of bath/shower room, graduated floor shower)

11. Relocated bathroom or toilet 12. Aids/adaptations to help with cooking (e.g.

changes to design of kitchen, tilting kettle, kitchen implements with better grip handles)

13. Assistance dog 14. Aids to help you use a computer

19. White stick 20. Guide dog 21. Magnifier 22. Screen reader 23. Braille reader for computer

Aids for people with hearing impairments Other aids 15. Hearing dog 16. Adaptation to doorbell or telephone (e.g.

installation of loop systems) 17. Adaptations to fire alarm 18. Typetalk/text phone

24. Electrical modifications (e.g. moving light switches, plugs etc)

25. Additional heating 26. Entry phone 27. Individual alarm system


SHOW CARD 4

Which of these statements best applies to the aids you told me about?

1. I always had a choice of what to get

2. I usually had a choice of what to get

3. I usually get a say, even if it wasn’t my choice

4. I never had a choice

SHOW CARD 5

Thinking generally, which of these best describes how suitable the property where you live is for your needs?

1. Very suitable

2. Quite suitable

3. Not very suitable

4. Not suitable at all

SHOW CARD 6

Which of these things do you get help with on a regular basis? By regular, I mean at least once a week.

1. Getting into or out of bed

2. Personal care (washing, dressing, going to the toilet)

3. Household cleaning/laundry

4. Cooking/preparing a meal

5. Managing and taking medication

6. Shopping

7. Running other errands (e.g. going to the post office)


SHOW CARD 7

Which of these things do you get help with if and when you need it?

1. Dealing with bank/managing money

2. Filling in forms

3. DIY/odd jobs


SHOW CARD 8

Which of these do you need help with but don’t get already?

1. Getting into or out of bed

2. Personal care (washing, dressing, going to the toilet)

3. Household cleaning/laundry

4. Cooking/preparing a meal

5. Managing and taking medication

6. Shopping

7. Running other errands (e.g. going to the post office)

8. Dealing with bank/managing money

9. Filling in forms

10. DIY/odd jobs


SHOW CARD 9

Which of these people or organisations help you at least once a week?

1. Spouse/partner

2. Parent

3. Child/children

4. Other family member

5. Friend/neighbour

6. Social Services/Adult Services

7. Home Help

8. Night Sitter

9. Personal Assistant/Community Care Assistant

10. Day centre

11. Community Nurse

12. Person from voluntary/charitable organisation (e.g. Age Concern)


SHOW CARD 10

How much choice do you have …

1. A great deal

2. Quite a lot

3. A little

4. None at all

SHOW CARD 11

How satisfied or dissatisfied are you …?

1. Very satisfied

2. Quite satisfied

3. Neither satisfied nor dissatisfied

4. Quite dissatisfied

5. Very dissatisfied

SHOW CARD 12

Which of these forms of transport have you used in the past month?

1. Car driven by yourself

2. Car driven by friend/family member

3. Car driven by someone else

4. Door to door services (e.g. minibus)

5. Mobility scooter

6. Taxi/minicab

7. Bus or coach services

8. Rail services

9. Light rail, tram or underground services

SHOW CARD 13

Which, if any, of these do you hold?

1. Blue or orange badge for use in a car

2. Disabled person’s railcard

3. Local Authority concessionary fares (bus/rail) pass

4. Concessionary card for free or discounted taxi travel

SHOW CARD 14

Which of these types of trip have you made in the past month?

1. Travel to work/education/training

2. Visit friends/relatives

3. Go to the Doctors

4. Go to hospital appointments

5. Do supermarket shopping

6. Go to ‘convenience store’ or local shops

7. Go to leisure activities during the day

8. Go to leisure activities during the evening

9. Take children to leisure activities (e.g. music lessons, football, cinema)

SHOW CARD 15

How easy or difficult do you usually find it travelling about day to day?

1. Very easy

2. Quite easy

3. Neither easy nor difficult

4. Quite difficult

5. Very difficult

SHOW CARD 16

Which of these make it more difficult for you to travel around day to day?

1. None of these – I have no problems travelling 2. Cost of public transport 3. Issues with childcare/caring responsibilities 4. Lack of confidence 5. Health problems/not well enough 6. No public transport in my local area 7. Public transport not frequent enough 8. Public transport is not safe 9. Public transport is not reliable 10. Need assistance with connections during journeys 11. Transport staff do not understand my needs/attitude of transport

staff 12. Attitude of other people/other travellers 13. Cannot get on to/use public transport 14. Cannot get to public transport (for example taxi to train station/bus

stop) 15. Cannot find information about public transport 16. Cannot find information about public transport in a form that suits

my needs 17. No access to a car 18. No-one to take me where I need to go/drive me where I need to go 19. Taxis/Transport schemes will not take me to the place I want to

go/home 20. No access to adapted transport 21. Need someone to accompany me on part of the journey 22. Need someone to accompany or take me on all of the journey 23. Previous bad experience Other (please tell interviewer)

SHOW CARD 17

Thinking about the journeys you do regularly, do you find that you have to plan your journeys well in advance?

1. Yes, all of the time

2. Yes, for over half of the journeys I make, but not all

3. Yes, for less than half of the journeys I make

4. Yes, but only for a few long journeys

5. No, never plan well in advance

SHOW CARD 18

Can I just check, do you ever personally use any of these services?

1. Community car (i.e. volunteer drivers using their own

vehicles)

2. Motability (enables disabled people to obtain a car, powered wheelchair or scooter using mobility allowances)

3. Buggies at airports or rail stations

4. Disabled person’s booking system (for assistance at rail stations)

5. Shopmobility (i.e. providing wheelchairs or escorts to help people shop and use facilities)

SHOW CARD 19

How much do you agree or disagree …?

1. Agree strongly

2. Agree slightly

3. Neither agree nor disagree

4. Disagree slightly

5. Disagree strongly

SHOW CARD 20

How often, if at all, do you …

1. Every day

2. 2-3 times a week

3. At least weekly

4. At least monthly

5. Less often

6. Never

SHOW CARD 21

In the last month, have you done any of these things?

1. Gone out with friends or family for a meal or a drink

2. Visited family or friends at their home

3. Gone shopping with friends/family

4. Gone to an evening or other education class

5. Gone to church, synagogue, mosque, temple or other place of worship

6. Gone to the cinema, theatre, concert or other social entertainment

7. Played a game or sport, gone swimming, gone to gym, keep fit or dancing

8. Gone to a library

9. Done some gardening

10. Done DIY

11. Done arts/crafts

12. Babysat/childminded (for children other than your own)


SHOW CARD 22

Which of the things on this card stopped you from doing more of the activities you wanted to do?

1. None of these – I do all the activities I want to do 2. Lack of time 3. Cost/lack of money 4. Difficulties with childcare arrangements/caring

responsibilities 5. Lack of confidence 6. Health problems/not well enough 7. No suitable facilities locally 8. Attitude of staff at the venue 9. Attitude of other people at the venue 10. Difficulties with transport/travel to the venue 11. Need someone accompany me on the journey 12. Need someone to accompany me to the activity 13. Difficulties getting around in the venue/venue is not

accessible 14. Lack of suitable toilet facilities at the venue 15. Need aids/adaptations to enable me to do it 16. Lack of equipment (e.g. to do arts/crafts or play sports) 17. Cannot find information about the activity/don’t know

what is available locally 18. Information not available in a form that suits my needs 19. Safety/do not feel safe going out 20. Previous bad experience Other (please tell interviewer)

SHOW CARD 23

For which of these activities do you use the internet nowadays?

1. I work using the internet 2. Using email 3. To meet new people online 4. Using social networking sites (e.g. Bebo, Myspace,

Facebook, Friends Reunited) 5. Using forums, chatrooms or newsgroups 6. Writing my own Weblog/Blog 7. Looking at other people’s Weblogs/Blogs 8. Finding information about goods and services (including

holidays, flights, houses) 9. Buying or ordering tickets/goods/services 10. Personal banking, financial and investment activities 11. Looking for jobs/work 12. Downloading software, including games 13. Playing or downloading music 14. Finding information related to schoolwork or an education

course 15. Accessing government/official services 16. Finding out about social activities locally 17. Finding out more about my disability/health

problem/impairment 18. Sharing information about my disability/health

problem/impairment 19. General browsing Other (please tell interviewer)

SHOW CARD 24

Which of these aids or adaptations do you use to help you use the internet?

1. None of these

2. Screen reader/JAWS

3. Screen magnifier

4. Voice control software

5. Adapted mouse/pointing device (e.g. roller ball, joystick head pointer, touch monitor)

6. Adapted keyboard


SHOW CARD 25

What are the main reasons stopping you from using the internet (more)?

1. No reason – do not want to use the internet (more)

2. Need aids/adaptations to enable me to use the internet

3. Do not feel confident using the internet

4. Other people (e.g. parents/carer/assistant) do not want me to use the internet (more)

5. Worries about security/viruses

6. Cost of buying own computer/repairs to computer

7. Lack of knowledge of how to install internet access at home

8. Cost of access to the internet at home

9. Problems getting to other locations where I could access the internet (e.g. transport issues, need someone to go with me)

10. Cost of access to the internet at locations outside of home

11. Previous bad experience


SHOW CARD 26

How much do you agree or disagree … ?

1. Agree strongly

2. Agree slightly




SHOW CARD 27

How often have you …?

1. Never

2. At most three or four times a year

3. About every other month

4. About once a month

5. Several times a month, but not every week

6. About once a week

7. Several times a week

8. Every day

SHOW CARD 28

In which of these ways have you given UNPAID help, in the last 12 months?

1. Raising or handling money e.g. collections, selling raffle

tickets, selling at a jumble sale, fete or charity shop, taking part in a fundraising or sponsored event

2. Leading the group/member of a committee

3. Organising or helping to run an activity or event

4. Visiting/befriending people

5. Giving advice/information/counselling

6. Secretarial, admin or clerical work

7. Providing transport/driving

8. Representing a group of people e.g. addressing meetings, leading a delegation

9. Campaigning e.g. lobbying, canvassing, letter writing

10. Other practical help e.g. shopping, providing food or refreshments, making or mending, delivering (on foot)


SHOW CARD 29

In the last 12 months, have you done any of these things, unpaid, for someone who does not live with you? This might be for a friend, relative, neighbour, or someone else.

1. Keeping in touch with someone who has difficulty getting out and about

2. Doing shopping, collecting pension or paying bills for someone

3. Cooking, cleaning, laundry, gardening or other routine household jobs for someone

4. Decorating, or doing any kind of home or car repairs for someone

5. Baby sitting or caring for children

6. Sitting with or providing personal care for someone who is sick or frail

7. Looking after a property or a pet for someone who is away

8. Giving advice to someone

9. Writing letters or filling in forms for someone

10. Representing someone

11. Transporting or escorting someone


SHOW CARD 30

In the past 12 months have you taken any of the following actions in an attempt to solve a problem you feel strongly about?

1. Written to a local newspaper

2. Contacted the appropriate organisation to deal with the problem, e.g. council

3. Contacted a local councillor or MP

4. Attended a public meeting or neighbourhood forum to discuss local issues

5. Attended a tenants’ or local residents’ group

6. Attended a protest meeting or joined an action group

7. Helped organise a petition on a local issue


SHOW CARD 31

Which of these things prevent you from getting more involved with clubs, groups or the local community?

1. None of these – I do not want to be more involved 2. Lack of time 3. Cost/lack of money 4. Difficulties with childcare/caring responsibilities 5. Lack of confidence 6. Health problems/not well enough 7. No local clubs/groups I could attend 8. Attitude of staff at the venue 9. Attitude of other people at the venue/other people in the

group 10. Difficulties with transport/travel to meetings 11. Need someone accompany me on the journey 12. Need someone to accompany me at the group meeting 13. Difficulties getting around in the meeting venue/venue is

not accessible 14. Lack of suitable toilet facilities at the venue 15. Need aids/adaptations to enable me to get involved 16. Cannot find information about it/don’t know how to get

involved 17. Information not available in a format that suits my needs 18. Safety/do not feel safe going out 19. Previous bad experience Other (please tell interviewer)

SHOW CARD 32

How much do you agree or disagree … ?

1. Agree strongly

2. Agree slightly




SHOW CARD 33

Which of the categories on this card best describes what you do at the moment?

1. Working in a paid job as an employee

2. Working in a paid job or business on a self-employed basis

3. (Temporarily) laid off, or on short time

4. Unemployed and actively seeking work

5. On a special government training or employment scheme

6. Doing unpaid work for yourself or a relative

7. A full time student or pupil

8. Looking after the family or home

9. Not working because temporarily sick or injured

10. Not working because long-term sick or disabled

11. Retired from paid work

SHOW CARD 34

When was the last time you had paid work?

1. less than 3 months ago

2. at least 3 months but less than 6 months ago

3. at least 6 months but less than 12 months ago

4. at least a year but less than 2 years ago

5. at least 2 years but less than 5 years ago

6. at least 5 years but less than 10 years ago

7. At least 10 years but less than 15 years ago

8. 15 or more years ago

SHOW CARD 35

Has your health problem, impairment or disability impacted on your ability to do paid work in any of these ways?

1. It has made me unable to work

2. It has limited the KIND of paid work I can do

3. It has limited the AMOUNT of paid work I can do

SHOW CARD 36

Has the kind of paid work you can or might be able to do been affected in any of these ways?

1. Unable to work full time

2. Causes you to be off sick for long period of time

3. Causes you to need to take time off work/sick at short notice

4. Means you have to break off work several times a day for over 10 minutes at a time

5. Makes it more difficult for you to travel to work

6. Means you need support to do your job (at least some of the time)

7. Means you need special aids or equipment to do your job

8. Makes it difficult for you to work in certain buildings (e.g. if particularly dusty or noisy)

9. Makes it difficult for you to do a job involving heavy physical work and/or lifting

10. Need to manage stress/unable to work in stressful situations


SHOW CARD 37

Have you ever had to leave a job for any of these reasons connected with your health condition, impairment or disability?

1. Dismissed due to your health problem/disability

2. Advised by your employer to resign due to your health problem/disability

3. Advised by your doctor to resign due to your health problem/disability

4. Advised by someone else to leave because of your health problem/disability

5. Attitude of your employer made it difficult for you to continue working

6. Attitude of colleagues made it difficult for you to continue working

7. Job role/type of job made it difficult for you to continue working

8. Employer refused to make adaptations or adjustments to enable you to do your job

SHOW CARD 38

Would it have been possible for you to have remained in this previous job/self-employed activity if any of these types of support, adaptations or adjustments to the job, the workplace, or the working arrangements had been made?

1. None of these

2. Opportunity to work at home

3. Flexible working hours

4. Opportunity to work in a different location/easier to get to place of work

5. Improved access/easier to get around in the workplace

6. Provision of a personal assistant/support worker

7. Improved facilities/provision of aids/adaptations

8. Changes to working practices

9. Better salary/more money

10. Reduced/lower levels of stress

11. Support and understanding from employer/manager

12. Support and understanding from colleagues

13. If employer/manager asked me what support, aids or adaptations I would want

14. Help with childcare/caring responsibilities

15. Flexibility for Doctor’s/hospital appointments


SHOW CARD 39

Are any of these things stopping you working at the moment?

1. Availability of jobs in the area

2. Issues with childcare/cannot find/afford childcare

3. No work available

4. Don’t have the required skills/qualifications

5. Better off not working/earn more from benefits

6. Don’t want to leave home/children

7. Partner/other person prefers me not to work

8. Caring for sick/disabled relative

9. Pregnancy

10. Studying/full time student

11. Too old

12. Unable to cope with work at the moment

13. I have retired from paid work

14. Previous bad experience


SHOW CARD 40

What kind of organisation do/did you work for?

1. A private firm or business (e.g. Limited Company, PLC)

2. A public sector organisation (e.g. NHS, police, local authority, civil service, armed forces, education establishment)

3. A charity, voluntary organisation or trust


SHOW CARD 41

How many employees are/were there in total at the place where you work/ed?

1. 1-10

2. 11-14

3. 15-19

4. Don’t know but under 20

5. 20-49

6. 50-199

7. 200-499

8. 500-1999

9. 2000 or more

SHOW CARD 42

Which of the things on this card…?

1. Opportunity to work at home

2. Flexible working hours

3. Opportunity to work in a different location/easier to get to place of work

4. Improved access/easier to get around in the workplace

5. Provision of a personal assistant/support worker

6. Improved facilities/provision of aids/adaptations

7. Changes to working practices

8. Better salary/more money

9. Reduced/lower levels of stress

10. Support and understanding from employer/manager

11. Support and understanding from colleagues

12. If employer/manager asked me what support, aids or adaptations I would want

13. Help with childcare/caring responsibilities

14. Flexibility for Doctor’s/hospital appointments


SHOW CARD 43

How much do you agree or disagree …. ?

1. Agree strongly

2. Agree slightly




SHOW CARD 44

What types of income does your household receive? Please consider the income of all household members and any income received by the household as a whole.

1. Earnings from employment or self employment (including

any bonuses)

2. Earnings from casual work/one-off payments

3. Pension from a former employer/spouse’s former employer

4. State Retirement Pension

5. Widow or War Widow’s Pension

6. State benefits or Tax Credits (e.g. incapacity benefits, child benefit, income support)

7. Interest or other income from savings or investments

8. Rent from property

9. Maintenance payments/Alimony

10. Direct payments (payment from local authority/council to pay for help and support)

11. Grants from government organisations/local council

12. Grants from other organisations (e.g. charitable organisation)

13. Loans taken out

14. Gifts/money from friends/family members not living in this household

15. Rent from boarders or lodgers


SHOW CARD 45

Which of the groups on this card represent the total income of the whole household, before deductions for income tax, National Insurance etc.

Please tell the interviewer the letter that corresponds to the answer you want to give.

Weekly Monthly Annual H Less than £50 Less than £216 Less than £2600 D £51 less than £100 £216 less than £433 £2600 less than £5200 J £100 less than £200 £433 less than £866 £5,200 less than £10,400 B £200 less than £300 £866 less than £1,300 £10,400 less than £15,600 F £300 less than £400 £1,300 less than £1,733 £15,600 less than £20,800 E £400 less than £650 £1,733 less than £2,816 £20,800 less than £33,800 I £650 less than £788 £2,816 less than £3,417 £33,800 less than £41,000 A £788 less than £885 £3,4167 less than £3,833 £41,000 less than £46,000 K £885 less than £1,154 £3,833 less than £5,000 £46,000 less than £60,000 G £1,154 less than £1,538 £5,000 less than £6,667 £60,000 less than £80,000 C £1,538 or more £6,667 or more £80,000 or more

SHOW CARD 46

Does anyone in this household receive any of the benefits or tax credits on this card at the moment?

1. Incapacity benefit

2. Income Support

3. Housing or Council Tax Benefit

4. Severe Disablement Allowance

5. Disability Living Allowance

6. Attendance Allowance

7. Carer’s Allowance

8. Invalid Care Allowance

9. Industrial Injuries Disablement Allowance

10. Statutory Sick Pay

11. National Insurance credits for incapacity

12. Another sickness or disability benefit

13. Jobseeker's Allowance

14. Child Benefit

15. Child Tax Credit/ Children's Tax Credit

16. Working Tax Credit/ Working Families' Tax Credit/ Disabled Person's Tax Credit

17. Pension Credit

18. War Pension/War Disability Pension


SHOW CARD 47

Which of the phrases on the card best describes how your household are getting along financially nowadays?

1. I/we manage very well

2. I/we manage quite well

3. I/we get by alright

4. I/we have some financial difficulties

5. I/we have severe financial difficulties

SHOW CARD 48

Which of these reasons describe why your household finds it difficult to manage nowadays?

1. Loss of income due to sickness or disability

2. Loss of income due to taking up caring responsibilities

3. Loss of income due to redundancy

4. Loss of income due to relationship breakdown

5. Problems with benefits

6. Other loss of income

7. Repayment of over-paid tax credits

8. Low income

9. Over-commitment

10. Increased/unexpected expenses

11. Overlooked or withheld payment

12. Third party error

13. Long term debts

14. Debts left by former partner

15. Am not allowed to work because of immigration/asylum status

16. Higher costs because of my health problem, impairment or disability


SHOW CARD 49

Does your financial situation have any of these impacts on you or your household?

1. Stress/anxiety

2. Unable to afford essentials

3. Unable to afford non-essentials

4. Adverse effect on relationship

5. Adverse effect on mental health

6. Unhappiness/anger

7. Adverse effect on physical health


SHOW CARD 50

Have you or your household had your benefits stopped or substantially reduced over the past 5 years for any of these reasons?

1. Because I/someone in my household had started paid work

2. Because I/someone in my household was receiving income from other sources

3. Because a partner had moved in

4. Because a dependent child had left home

5. Following an assessment of my/their health/ability to work

For some other reason (please tell interviewer)

SHOW CARD 51

Which of these best describes your view at the time your benefits were stopped or reduced?

1. I was not expecting these benefits to be stopped/reduced at all

2. I was expecting some reduction in benefits, but not by the amount they were reduced

3. I was expecting these benefits to be reduced by the amount by which they were reduced/stopped altogether


SHOW CARD 52

When your benefits were stopped or reduced, how was your total household income affected?

1. Reduced by up to a quarter

2. Reduced by more than a quarter, up to a half

3. Reduced by more than a half, up to three quarters

4. Reduced by more than three quarters

5. We had no income during this time

SHOW CARD 53

During this time how did your household manage financially?

1. I/We managed very well

2. I/We managed quite well

3. I/We got by alright

4. I/We had some financial difficulties

5. I/We had severe financial difficulties

SHOW CARD 54

Did your financial situation have any of these impacts on you or your household

1. Stress/anxiety

2. Unable to afford essentials

3. Unable to afford non-essentials

4. Adverse effect on relationship

5. Adverse effect on mental health

6. Unhappiness/anger

7. Adverse effect on physical health


SHOW CARD 55

Which of these people made the assessment?

1. Own GP

2. Hospital doctor who I was/they were already in contact with

3. Independent GP/other doctor (not previously known to you/them)

4. Occupational Therapist

5. Social worker


SHOW CARD 56

How concerned are you about your financial situation over the next few years?

1. Very concerned

2. Quite concerned

3. Not very concerned

4. Not concerned at all

SHOW CARD 57


1. Agree strongly

2. Agree slightly




SHOW CARD 58

Some people who are disabled or with long term health problems or impairments feel that their cost of living is more expensive. In your experience, which, if any, of these do you think are more expensive for you compared with non-disabled people?

1. Housing costs/rent/mortgage

2. Additional fuel/heating costs

3. Need to pay for aids/adaptations to home

4. Need to pay for help/support

5. Need to pay for medical treatment/prescriptions

6. Need to pay for special food/drinks

7. Need to do more laundry than other people

8. Transport costs are higher

Other additional costs (please tell interviewer)

SHOW CARD 59

Which of these health services have you personally used in the past 3 months?

1. GP

2. Practice nurse

3. Outpatients/day patient appointment

4. Been admitted as an inpatient

5. Visit to A&E/Casualty

6. Visit from a district nurse

7. Physiotherapy

8. Occupational therapy

9. Optician

10. Chiropody

11. Psychiatrist/psychologist

12. Counsellor/therapist

13. Community Psychiatric Nurse

14. Self-help group


SHOW CARD 60

In the last 3 months, how often have you visited or used any of these services?

1. Every day

2. 2-3 times a week

3. About once a week

4. About once every 2 weeks

5. About once every 3 weeks

6. Once or twice every month

7. Once or twice every 2 months

8. Once or twice every three months

9. Less often

SHOW CARD 61

How satisfied or dissatisfied are you …?

1. Very satisfied

2. Quite satisfied




SHOW CARD 62

Which if any of these make it harder for you to get the most from any of the health services we have been talking about?

1. None of these 2. Lack of time 3. Cost/lack of money 4. Difficulties with childcare /other caring responsibilities 5. Lack of confidence 6. Distance to premises 7. Difficulties with transport/travel to appointments 8. Difficulties getting around in the premises e.g. clinic/health

centre/hospital is not accessible 9. Lack of suitable toilet facilities at the premises 10. Attitude of staff at the premises 11. Attitude of other people at the premises 12. Need someone accompany me on the journey 13. Need someone to accompany me at the appointment 14. Safety/do not feel safe going out 15. Cannot find information about it/don’t know how to access the

health services 16. Information not available in a format that meets my needs 17. Don’t know what services are available 18. Inconvenient appointment times 19. Poor communication between health professionals 20. Lack of continuity of care/not seeing the same person each

time 21. Cannot find an NHS Dentist/GP/Service 22. I have been removed from GP/Dentist/other health

professional list 23. Negative previous experience Other (please tell interviewer)

SHOW CARD 63

How satisfied are you with the information you receive from health professionals about your health problem, impairment or disability?

1. Very satisfied

2. Quite satisfied




SHOW CARD 64

Which types of schools did you go to?

1. Mainstream school with no special provision for people

with health problems or disabilities

2. Mainstream school with special provision

3. School where you don’t know if they had special provision

4. Specialist school (e.g. for children with visual impairments)


SHOW CARD 65

How much of a say did your family have over which schools you attended?

1. It was entirely our choice

2. We had a say, but it wasn’t our choice

3. We had no say at all

SHOW CARD 66

Overall, how would you describe your experience of education up to the age of 16?

1. Very good

2. Fairly good

3. Neither good nor bad

4. Fairly bad

5. Very bad

SHOW CARD 67

How well do you think your education up to the age of 16 prepared you for the future?

1. Very well

2. Quite well

3. Not very well

4. Not well at all

SHOW CARD 68

In which of these types of educational establishments have you continued your full time education?

1. 6th form Secondary school - no special provision

2. 6th form Secondary school - with special provision

3. 6th form Secondary school - DK if had special provision

4. Specialist School – (e.g. for visually impaired people)

5. Further Education/6th Form College - no special provision

6. Further Education/6th Form College - with special provision

7. Further Education/6th Form College – don’t know if it had special provision

8. Specialist College at Further Education Level - (e.g. for blind people)

9. University, Polytechnic, Higher Education Institute


SHOW CARD 69

In five years’ time what do you think you will be doing?

1. Studying at college or university

2. Working in a profession (e.g. doctor, accountant)

3. Working in an office

4. Working in a skilled trade (e.g. electrician, plumber)

5. Other work (e.g. working in a shop, factory, building site)

6. Staying at home with family/children


SHOW CARD 70

Did you continue full time education beyond the age of 16 in any of these?

1. Did no post 16 education

2. 6th form Secondary school - no special provision

3. 6th form Secondary school - with special provision

4. 6th form Secondary school - DK if had special provision

5. Specialist School – (e.g. for visually impaired people)

6. Further Education/6th Form College - no special provision

7. Further Education/6th Form College - with special provision

8. Further Education/6th Form College – don’t know if it had special provision

9. Specialist College at Further Education Level - (e.g. for blind people)

10. University, Polytechnic, Higher Education Institute


SHOW CARD 71

1 Any of these qualifications Doctorate Masters Postgraduate Diploma Postgraduate Certificate

2 Any of these qualifications First degree PGCE HND NVQ/SVQ Level 4 SCOTVEC Higher

3 Any of these qualifications 2 or more A levels 4 or more AS levels 3 or more Scottish Highers GNVQ/GSVQ Advanced BTEC National Diploma NVQ/SVQ Level 3 SCOTVEC National Completed Trade Apprenticeship

4 Any of these qualifications: 5 or more GCSEs/O levels at grades A*-C or CSEs at grade 1 1 A level 3 or fewer AS levels 1 or 2 Scottish Highers GNVQ/GSVQ Intermediate level BTEC Intermediate or Diploma NVQ/SVQ Level 2 SCOTVEC Diploma

5 Any of these qualifications: Any GCSEs/O levels, but fewer than 5 at grades A*-C 2 CSEs or less GNVQ /GSVQ Foundation level BTEC First SCOTVEC cert NVQ/SVQ Level 1 Key Skills or Basic Skills qualifications

6 None/no educational qualifications Any other qualification (please tell interviewer)

SHOW CARD 72

Are you currently participating in any of these Government or other special training or employment programmes?

1. Youth training/modern apprenticeships

2. Work Based Learning for Adults (WBLA)

3. Training for Work scheme

4. Work trials

5. Work preparation

6. Job introduction scheme

7. New Deal - other than for disabled people

8. New Deal for disabled people


SHOW CARD 73

Do you do any of the following nowadays on a regular basis?

1. Courses, classes or tuition intended to lead to a qualification

2. Courses, classes or tuition not intended to lead to a qualification

3. Other learning activities which are not part of an organised course

SHOW CARD 74

1 Any of these qualifications Doctorate Masters Postgraduate Diploma Postgraduate Certificate

2 Any of these qualifications First degree PGCE HND NVQ/SVQ Level 4 SCOTVEC Higher

3 Any of these qualifications 2 or more A levels 4 or more AS levels 3 or more Scottish Highers GNVQ/GSVQ Advanced BTEC National Diploma NVQ/SVQ Level 3 SCOTVEC National Completed Trade Apprenticeship

4 Any of these qualifications: 5 or more GCSEs/O levels at grades A*-C or CSEs at grade 1 1 A level 3 or fewer AS levels 1 or 2 Scottish Highers GNVQ/GSVQ Intermediate level BTEC Intermediate or Diploma NVQ/SVQ Level 2 SCOTVEC Diploma

5 Any of these qualifications: Any GCSEs/O levels, but fewer than 5 at grades A*-C 2 CSEs or less GNVQ /GSVQ Foundation level BTEC First SCOTVEC cert NVQ/SVQ Level 1 Key Skills or Basic Skills qualifications

6 None/no educational qualifications Any other qualification (please tell interviewer)

SHOW CARD 75

Which of these things on this card have stopped you from taking part in more education or training?

1. None – I don’t want to take part in more education or training 2. If I could study at home 3. Find it difficult to concentrate 4. Lack of time 5. Cost/lack of money 6. Difficulties with childcare arrangements/caring responsibilities 7. Lack of confidence 8. Health problems/not well enough 9. No suitable facilities locally 10. Attitude of staff at the venue 11. Attitude of other people at the venue 12. Staff do not know/understand enough about my impairment 13. Difficulties with transport/travel to the venue 14. Need someone accompany me on the journey 15. Need someone to accompany me to the activity 16. Difficulties getting around in the venue/venue is not accessible 17. Lack of suitable toilet facilities at the venue 18. Need aids/adaptations to enable me to do this 19. Lack of equipment 20. Cannot find information about education/training /don’t know

what is available locally 21. Cannot find information in a format that suits my needs 22. Safety/do not feel safe going out 23. Previous bad experience 24. The course/training I want to do is not available Other (specify)

SHOW CARD 76


1. Agree strongly

2. Agree slightly




SHOW CARD 77

From which of these would you prefer to get information about …?

1. GP/ Practice nurse

2. Doctor or nurse at a hospital

3. Other therapist (e.g. occupational therapist)

4. Other health professional (e.g. dentist, pharmacist)

5. Charity/organisation/ group relevant to my health problem, impairment or disability

6. Support group

7. Citizens Advice Bureau (CAB)

8. Jobcentre Plus

9. Department for Work and Pensions (DWP)

10. Pension Service

11. Social Services/Adult Services

12. Friends/family


SHOW CARD 78

In which of these formats would you prefer to receive this information?

1. Face to face/meeting/speaking with people

2. Telephone

3. Internet –Organisations relevant to my health problem, impairment ordisability

4. Internet – forums/ chat rooms or news groups

5. Internet – Other sites

6. Books/Magazines/ Newspapers

7. Leaflets

8. Interactive TV (red button on digital TV channels)/Ceefax

9. Radio


SHOW CARD 79

Have you personally ever felt that you have been treated unfairly or discriminated against for any of these reasons?

Please tell the interviewer the letter which matches the answer or answers you want to give.

H: Because of your age

L: Because of your gender (i.e. because you are a man or woman)

Q: Because of your ethnic background

S: Because of your religion or faith

A: Because of your health problem, impairment or disability

F: Because you are gay, lesbian, bisexual or transgender

For another reason (please tell interviewer)

SHOW CARD 80

When you felt that you were discriminated against or treated unfairly because of your health problem, impairment or disability, what was this in relation to?

1. Work or employment (either a job you already had, or a job you were applying for)

2. Buying or getting information on goods or services (for example buying things in a shop, using leisure facilities)

3. Using/joining private clubs

4. In relation to benefits

5. Using other public services (e.g. health services, social services)

6. Your home/where you live (e.g. getting housing, problems with housing)

7. Transport and getting around

8. Learning, education or training

9. While out and about


SHOW CARD 81

Which of the things on this card best describe the difficulties you had?

1. Getting information in a suitable format (e.g. Braille, large print, easy read)

2. Getting there

3. Getting into the place

4. Getting around inside

5. Understanding/making myself understood

6. Lack of facilities (e.g. parking spaces, special shopping trolleys, accessible toilet)

7. Lack of privacy

8. Refused entry

9. Refused service

10. Asked to leave

11. Received a lower standard of service than other customers

12. Verbal or physical abuse


SHOW CARD 82

Did any of these things happen as a result?

1. The complaint was settled at the time and no further action was taken

2. The complaint was dealt with by the organisation (e.g. shop, council)

3. The complaint was dealt with by an Ombudsman or similar body

4. The complaint was dealt with through mediation

5. The complaint was taken to court


SHOW CARD 83

The Disability Discrimination Act aims to prevent discrimination against disabled people and gives disabled people rights areas such as employment, education, access to goods, facilities and services and housing.

The Act also allows the government to set some standards so that disabled people can use public transport easily.

SHOW CARD 84

So, thinking about your life as a whole, would you say that it is…

1. So good, it could not be better

2. Very good

3. Good

4. Alright

5. Bad

6. Very bad

7. So bad, it could not be worse

SHOW CARD 85

Thinking generally, do you think that you …

1. Always

2. Usually

3. Sometimes

4. Not very often

5. Never

SHOW CARD 86

Which of these statements would you say you most agree with?

1. My health problem or disability has no impact on my

ability to lead a full life

2. I cannot lead a full life due to my health problem/disability

3. I cannot lead a full life due to my health problem/disability AND because attitudes and barriers in society prevent me from doing so

4. I cannot lead a full life because attitudes and barriers in society prevent me from doing so

SHOW CARD 87

To which of these groups do you consider you belong?

A White. 1. British 2. Irish 3. Any other White background

B Mixed 4. White and Black Caribbean 5. White and Black African 6. White and Asian 7. Any other Mixed background

C Asian or Asian British

8. Indian 9. Pakistani 10. Bangladeshi 11. Any other Asian background

D Black or Black British

12. Caribbean 13. African 14. Any other Black background

E Chinese or other ethnic group

15. Chinese Any other (please tell interviewer).

SHOWCARD 88

Which of the conditions on the card have you ever been diagnosed with?

You can just tell the interviewer the number that corresponds to the answer you want to give.

1. HIV

2. Cancer

3. Multiple Sclerosis

Documents

Experiences and Expectations of Dis-abled People ...doc.ukdataservice.ac.uk/doc/6021/mrdoc/pdf/6021userguide.pdfOnce the interviewer had sampled from any multiple dwellings, he/she