Life opportunities survey user guide to defining and coding disability
Contents
1. LearnLim This is a follow up to Learn and The list of contextual factors has been designed through Qualitative testing feasibility Yes records various contextual factors consultation with the RADAR reference network of trial and pilot environmental social barriers and disabled people These are some of the most common personal factors which may be reasons given by RADAR members They have also been contributing to a participation qualitatively and quantitatively tested restriction Health condition disability are also included as under the ICF body functions and structures interact with contextual factors in the process of participation restriction In addition testing has shown people with impairments or health conditions will often want to answer in this way SEN Record special educational needs of These questions have been included due to a request None of our own qualitative No SenCurr children aged 11 to 15 from a government department Taken from the testing although LSYPE may Longitudinal Survey of Young People in England 2004 have done some Was run on the February Pilot Work UsuHr Record number of hours worked This Harmonised question so we No can be compared with number of did not include in qualitative hours spent caring for others testing Was run on the feasibility trial and pilot Work Seek Record whether there are any barriers Most people are limited in the work they can do to some__2. The Life Opportunities Survey Interim Report 2009 10 can be found at http www statistics gov uk statbase Product asp vink 15386 Office for National Statistics 11 Life Opportunities Survey User guide to defining and coding disability Impairment cut off points Impairment status is defined from responses to the Impairments and health conditions section of the LOS questionnaire The approach we have taken is similar to the Northern Ireland Survey of Activity Limitation and Disability NISALD which uses a similar set of impairment screener questions A respondent is defined as having an impairment if they indicated the following within the impairments and health conditions section of the questionnaire e they experience either moderate severe or complete difficulty within at least one area of physical or mental functioning and e certain activities are limited in any way as a result Activities refer to different areas of physical or mental functioning such as walking climbing stairs or reading a newspaper It is therefore possible for adults to have more than one impairment The survey includes questions about physical mental and long term health conditions Severity of impairment Severity of impairment is defined from responses to the Impairments and health conditions section of the LOS questionnaire Respondents with impairments have been ranked into a severity category of one to four with one being least se
3. StopHol Record various contextual factors The list of contextual factors has been designed through Qualitative testing feasibility Yes StopF ri environmental social barriers and consultation with the RADAR reference network of trial and pilot StopFam personal factors which may be disabled people These are some of the most common StopSpor contributing to restrictions to reasons given by RADAR members They have also been StopCa participating in community leisure qualitatively and quantitatively tested StopMus and civic life StopThe Health condition disability are also included as under the StopCine ICF body functions and structures interact with contextual factors in the process of participation restriction In addition testing has shown people with impairments or health conditions will often want to answer in this way If a respondent indicates that the only reason they don t use this mode of transport is that they don t want or need to then they should not be recorded as having a participation restriction barrier Choice Measure the level of choice This is intended to feed into information for ODI s Qualitative testing feasibility No respondents feel they have over how they spend their time independent living strategy trial and pilot Accessibility The Home 20 GetHome Screen for any accessibility issues The interviewer instruction states with help or assistive
4. In addition testing has shown people with impairments or health conditions will often want to answer in this way InOut Screen for any accessibility issues This was added by request from a Government Pilot only Yes getting in or out of the home Department who pointed out that we cover inside the Indicates presence or absence of an home and outside the home but for some people there activity limitation participation are issues with getting out in the home due to stairs restriction relating to moving in or out slopes and so on of the home ICF code d4600 InOutWhy Record various contextual factors This is the same list as for AccHome Qualitative testing feasibility Yes environmental social barriers and personal factors which may be contributing to restrictions to getting in or out of the home trial and pilot Accessibility Outside the home 21 IntoBld Screen for any accessibility issues Earlier versions of these questions asked about the level Qualitative testing feasibility Yes ThruBld with buildings outside the home of difficulty accessing each building This meant there trial and pilot FacBld Indicates presence or absence ofan were a lot of questions with no distinction between activity limitation participation getting into moving around and using facilities restriction relating to buildings outside the home ICF code d4600 Three questions distinguish between 1
5. ICF outputs Impairments and Activity Limitations Impairments relate to the loss of physiological and psychological functions of the body such as loss of sight hearing mobility or learning capacity Impairments should be distinguished from medical conditions or loss of bodily structure For example glaucoma is a medical condition Loss of vision is the impairment it causes Activity limitations are restrictions an individual may have in executing physical or mental tasks or actions as a result of their impairment for example being unable to read newsprint at arms length without glasses or other aids and adaptations Measuring activity limitation and impairment takes into account the fact that not all conditions will result in limitation of the range of daily activities one can do The LOS therefore contains separate questions on physical and mental health conditions to questions on impairments and activity limitation in order to make clear theoretical distinctions between these concepts Questions that would feed into the impairments and activity limitation output are found in the impairments section of the LOS questionnaire in particular the questions asking what level of difficulty the respondent has in carrying out an activity and how often an impairment limits the kind or amount of physical or mental activities an individual can do Office for National Statistics 6 Life Opportunities Survey User guide to defining and coding disab
6. M and Slogett A 1999 Disability in Great Britain results from the 1996 97 disability follow up to the Family Resources Survey Department of Social Security Research Report No 94 Martin J Meltzer H and Elliot D 1988 The prevalence of disability among adults Office of Population Censuses and Surveys WHO 2002 Towards a common language for functioning disability and health Geneva Office for National Statistics 14 Appendix 1 LOS question guide wave 1 Question Purpose Background Testing Used for PRI ICF Participation Restrictions ICFLim To provide a high level indicator of These questions were designed to compliment the No qualitative testing as of Jan Yes ICF participation restriction These harmonised disability questions which measure 09 Proposed to be tested questions have been designed so impairment rather than participation restrictions While the alongside disability they can be administered by proxy if LOS questionnaire provides a much more detailed harmonisation project Was run necessary ICF codes d810 d839 measure of participation restriction including ICFLim on the February Pilot d840 d859 d450 d489 d710 d779 alongside the rest of the questionnaire means we can see d920 how the questions relate This will mean any other survey using these questions can be compared to LOS ICFWhy This is a follow up to ICFLim and Health condition disability are also incl
7. Qualitative testing feasibility Yes getting into rooms in the home devices if normally used This is because we are only trial and pilot Indicates presence or absence of an__ interested in where a barrier currently exists If activity limitation participation appropriate facilitators have been brought in to make restriction relating to moving around rooms accessible for example a stairlift or a full time within the home ICF code d4600 carer then the restriction has been removed GetRoom Record which rooms the respondent An earlier version of the questionnaire asked a separate Qualitative testing feasibility Yes has difficulty getting into question on accessibility for each room The new version trial and pilot saves time although we no longer have a scale for level of difficulty for each room AccHome Record various contextual factors The list of contextual factors has been designed through Qualitative testing feasibility Yes environmental social barriers and consultation with the RADAR reference network of trial and pilot personal factors which may be disabled people These are some of the most common contributing to restrictions to reasons given by RADAR members They have also been accessing rooms within the home qualitatively and quantitatively tested Health condition disability are also included as under the ICF body functions and structures interact with contextual factors in the process of participation restriction
8. different modes of transport are UndMuch distinguished ICF code d470 d489 LTrain LTraMuch DTrain DTrainMuch Taxi TaxiMuch TrLBus Record various contextual factors The list of contextual factors has been designed through Qualitative testing feasibility Yes TrDBus environmental social barriers and consultation with the RADAR reference network of trial and pilot 18 TrUnd TrLTra TrDTra TrTax personal factors which may be contributing to a participation restriction to using a motor vehicle disabled people These are some of the most common reasons given by RADAR members They have also been qualitatively and quantitatively tested Health condition disability are also included as under the ICF body functions and structures interact with contextual factors in the process of participation restriction In addition testing has shown people with impairments or health conditions will often want to answer in this way If a respondent indicates that the only reason they don t use this mode of transport is that they don t want or need to then they should not be recorded as having a participation restriction barrier Community Leisure and Civic Life LifeOppA LifeOppB Record whether there are any barriers or restrictions to participating in community leisure and civic life ICF code d910 d999 This approach was designed to replace a previous version where each ac
9. help in terms of daily weekly monthly or less often trial and pilot Testing revealed that frequency depends on need so varies according to need The question was subsequently reworded to refer to help when needed HelpSay Record how often the respondent This is intended to feed into information for ODI s Feasibility trial and pilot No feels they have a say over the help independent living strategy they receive Caring for Others CareHhid Record whether the respondent gives Questions in this section are taken from a module run on Since these had been run No CareLOut care to anyone A distinction is made GHS before we did not qualitatively between care within the home and test them They were run on care outside the home the feasibility trial and pilot CareHour Record time spent providing care Feasibility trial and pilot No Discrimination Discrim Record whether the respondent feels This question comes from the Northern Ireland survey Qualitative testing feasibility No they have been treated unfairly for NISALD The original question asked about trial and pilot any of the reasons on the card discrimination providing a definition which talked about unfair treatment We no longer use the term discrimination as we think people may have been treated unfairly but not want to label the experience as discrimination There was some question over the terminology used for sexual orientation DisWho Record who discri
10. participation restriction of those with impairments divided by the level of participation restrictions for those without impairments This provides an indication of the inequality experienced by people with impairments For example those with impairments are more than twice as likely to experience participation restrictions in education The total of this column is the ratio for all participation areas which will provide an indication of the prevalence of social model disability in Great Britain This can be tracked longitudinally While stand alone outputs for each of the domains is relatively straightforward to produce more complex analysis will be called for to examine the relationship between impairments activity limitations and participation restrictions and thereafter to understand how contextual factors influence these Participation Restriction Index An additional social model approach is to add together the number of barriers a person with an impairment faces A Participation Restriction Index PRI has been constructed calculated from the sum of participation restrictions All individuals regardless of impairment status have been given a PRI score Comparing the PRI of impaired vs non impaired respondents gives an indication of the participation inequality faced by people with impairments Please see chapter 3 of the LOS Interim Report 2009 10 for further information about the participation restriction index and methodology
11. questions Record the presence or absence of __ This section is structured in the format of 14 screener Qualitative testing feasibility Yes impairments or health conditions questions with follow up questions where appropriate trial and pilot Derived variables will need to be calculated from these follow up questions to indicate whether the respondent has an impairment Where help or assistive devices are normally used the questions ask about the situation with this assistance Other disability surveys ask about both with and without however we have had to keep this section short Benefits All questions Record receipt of benefits These have been included due to a request from ODI and Feasibility trial and pilot No DWP The questions are based on questions from LFS but have been developed in consultation with DWP to include a broader range of disability related benefits Quality of Life Quality Encourage positive discussion and This question is based on a similar idea used on the Pilot only No QualWhy improve the sense of satisfaction British Household Panel Survey Qualitative testing respondents have at the end of the warned that the survey may feel too rigid and restricted survey and that by not allowing respondents to express their situation we risk leaving them disillusioned This would ultimately impact on wave 2 response 26 These open ended questions may add to the survey length but the respondent
12. the follow up question TranStp is asked motor vehicle ICF code d470 d489 TranStp Record various contextual factors The list of contextual factors has been designed through Qualitative testing feasibility Yes environmental social barriers and consultation with the RADAR reference network of trial and pilot personal factors which may be disabled people These are some of the most common contributing to a participation reasons given by RADAR members They have also been restriction to using a motor vehicle qualitatively and quantitatively tested Health condition disability are also included as under the ICF body functions and structures interact with contextual factors in the process of participation restriction In addition testing has shown people with impairments or health conditions will often want to answer in this way If a respondent indicates that the only reason they don t use this mode of transport is that they don t want or need to then they should not be recorded as having a participation restriction barrier LBus Record whether there are any barriers If the respondent says they don t use a mode of transport Qualitative testing feasibility Yes LBusMuch to using modes of public transport or or that they use it less than they would like there may be trial and pilot DBus participation restrictions to using a barrier so a follow up question is asked DBusMuch modes of public transport Six UndTr
13. 7 KOCR K National Statistics Life Opportunities Survey User guide to defining and coding disability Editor Tom Howe Office for National Statistics Life Opportunities Survey User Guide Contents Authors Introduction Defining Disability Conceptual Models of Disability The Medical Model The Social Model ICF The Biopsychosocial Model The approach used in LOS How much information do we need about impairments Defining groups Disability Discrimination Act and Equality Act 2010 Coding Disability Coding ICF Outputs Impairments and Activity Limitations Participation Restrictions Coding DDA Outputs Office for National Statistics co N O QO 0 Life Opportunities Survey User Guide Overall Disability Prevalence Rates 9 Comparative Approach 10 Participation Restriction Index 11 Impairment Cut Off Points 12 Severity of Impairment 12 References 14 Appendix 1 LOS Question Guide Wave 1 15 Appendix 2 Using the ICF Coding Scale 28 Coding Body Functions 28 Coding Activity Limitations 28 Coding Participation Restrictions 28 Coding Environmental Factors 29 This publication can be provided in alternative formats such as large print Braille audiotape and on CD Please contact the Life Opportunities Survey Room 2 264 Office for National Statistics Cardiff Road Newport NP10 8XG Tel 01633 456297 Email los ons gov uk Office for National Statistics lil Life Opportunities Survey User G
14. Qualitative testing feasibility Yes NoWrk to employment or in ICF language extent because of the qualifications needed to do some trial and pilot participation restrictions to work However looking at the responses to the follow up employment Questions are routed to questions will tell us more about why people feel they are according to employment status ICF limited code d840 d859 WorkLim These record various contextual The list of contextual factors has been designed through Qualitative testing feasibility Yes SeekWhy factors environmental social barriers consultation with the RADAR reference network of trial and pilot NoWrk and personal factors which may be disabled people These are some of the most common contributing to a participation reasons given by RADAR members They have also been 16 restriction to working qualitatively and quantitatively tested Health condition disability are also included as under the ICF body functions and structures interact with contextual factors in the process of participation restriction In addition testing has shown people with impairments or health conditions will often want to answer in this way WorkHelp Record where facilitators have helped Facilitators are the opposite of barriers These questions Feasibility trial and pilot only No SeekHelp people to work or would be needed were add
15. behavioural memory mental health condition chronic health condition other impairment or health condition Office for National Statistics 12 Life Opportunities Survey User guide to defining and coding disability A summary of how the severity score has been defined is given in the table 5 below Table 5 Severity score ranking Frequency Difficulty Rarely Sometimes Often Always Mild difficulty Category 1 Category 1 Category 1 Category 2 Moderate difficulty Category 1 Category 2 Category 2 Category 3 Severe difficulty Category 2 Category 3 Category 3 Category 4 Cannot do Category 3 Category 4 Category 4 Category 4 For more information about the derivation of the severity score please see chapter 19 of the LOS Interim Report 2009 10 12 The Life Opportunities Survey Interim Report 2009 10 can be found at http www statistics gov uk statbase Product asp vink 15386 Office for National Statistics 13 Life Opportunities Survey User guide to defining and coding disability References Bajekal M Harries T Breman R and Woodfield K 2004 Review of Disability Estimates and Definitions DWP In house Report No 128 Berthoud R 2003 Multiple Disadvantage in Employment a quantitative analysis Joseph Rowntree Foundation Burchardt T 2003 Being and becoming Social exclusion and the onset of disability Joseph Rowntree Foundation Grundy E Ahlburg D Ali
16. blic bodies can meet the DED and assess the impact of their policies and services on disabled people and measure progress towards disability equality The DDA definition of disability has therefore been the starting point for several government sponsored surveys such as the Family Resources Survey in order to assess outcomes for people with rights under the legislation The LOS has also included a short suite of DDA definition questions which will allow comparison of statistics on outcomes for disabled people with other surveys As a longitudinal survey the LOS will allow analysts to monitor outcomes for disabled people through future years using the social model based approach outlined above Inclusion of the DDA definition questions will also allow for important comparisons in outcomes for disabled people by using time series data from other surveys over previous years Coding Disability This section sets out how the various aspects of disability can be coded from the LOS questionnaire A guide to the LOS wave one questions is provided in appendix 1 The language of the ICF is used see section 2 2 for key definitions The ICF also provides a coding scale described in appendix 2 http www dotheduty org For further information about the Family Resources Survey see http statistics dwp gov uk asd frs Office for National Statistics 5 Life Opportunities Survey User guide to defining and coding disability Coding
17. can take as little or as much time as they like to answer them KITE Consent As with the BHPS a decision was made not to specifically ask explicitly for consent to follow up The Blaise questionnaire only includes a function for spontaneous refusal 2 7 Appendix 2 Using the ICF coding scale The ICF uses an alphanumeric system in which the letters b a d and e are used to denote Body Functions Activities and Participation and Environmental Factors These letters are followed by a numeric code which corresponds to components of the ICF A qualifier can be added to a code to denote the magnitude of a problem Without qualifiers codes have no inherent meaning Using the ICF codes and qualifiers may aid comparisons between other international surveys using ICF although they are not essential to producing outputs Coding body functions One qualifier indicates the extent or magnitude of impairment b210 This is the code for seeing functions b201 0 NO impairment in seeing functions b201 1 MILD impairment in seeing functions b201 2 MODERATE impairment in seeing functions b201 3 SEVERE impairment in seeing functions b201 4 COMPLETE impairment in seeing functions Coding activity limitations The ICF uses two qualifiers for these categories e Performance qualifier what an individual does in his or her current environment e Capacity qualifier an individual s ability to execute a task or an ac
18. ed at the request of HMRC NoWkHelp _ by someone to be able to work Economic Life RepayL Provide a comparable measure of ODI requested that we include something on material Feasibility trial and pilot only No BurdRepyL financial difficulty material deprivation These questions were designed for GLF in AffordL deprivation order to meet an EUSILC requirement They have not been qualitatively tested by GLF or by LOS EndMeet Record the level of difficulty people Feasibility trial and pilot only Yes have managing financially The purpose is similar to other barrier questions in that it records whether there are any participation restrictions to economic life ICF code d860 d879 MonRL This is a follow up to EndMeet and Feasibility trial and pilot only Yes records various contextual factors environmental social barriers which may be contributing to financial difficulties Transport UseVcl Record whether anyone in the This is a GSS harmonised question Feasibility trial and pilot only No household has use of a motor vehicle This is used as a filter for the following questions VclOut Record whether there are any barriers If the respondent says they don t go out in the vehicle or Qualitative testing feasibility Yes 17 VclMuch to using a motor vehicle or that they go out less than they would like there may be a trial and pilot participation restrictions to using a barrier so
19. erent areas of life To meet the social model definition of disability the LOS requires someone to have experienced barriers to participation and have an impairment To clarify the approach the LOS has taken at the analysis stage respondents have been defined according to the following four scenarios 1 People with impairments who face participation restrictions 2 People with impairments who do not face participation restrictions 3 People without impairments who face participation restrictions 4 People without impairments who do not face participation restrictions Only people in scenario one will be considered to be disabled using the approach described above In the baseline survey wave one all adults who agree to take part from a random sample of around 37 500 households will receive a full face to face interview whether they have an impairment or not As a longitudinal survey the LOS is designed to follow up every respondent on an annual basis Part of the longitudinal design of the survey involves categorising respondents into three main sample groups for follow up in future years or Waves of interview e Group A people with impairments at the baseline survey e Group B a sub sample of people without impairments who will act as a comparison sample to compare outcomes with Group A e Group C the remainder of the sample of people without impairments who will be followed by telephone to identify whether they have
20. ers include discrimination the attitudes of other people inaccessible buildings public transport and information limited income not having anyone to meet or speak to as well as lack of support equipment and adjustments The social model output provides an overall indicator of the prevalence of social model disability but will also lends itself well to longitudinal analysis we would expect the difference in participation restrictions between impaired and non impaired people to reduce as the Governments commitment to disability equality is achieved Table 4 shows participation restriction prevalence by life area and impairment status in Great Britain between June 2009 and March 2010 7 See the Governments business plan http transparency number10 gov uk transparency srp view srp 42 8 1 Office for National Statistics 10 Life Opportunities Survey User guide to defining and coding disability Table 4 Prevalence of participation restrictions of adults by life area and impairment status 2009 10 Area of participation Adults without Adults with Ratio impairments impairments Education and training 9 17 1 8 Employment 26 56 2 2 Economic life and living 29 45 1 5 standards Transport 58 74 1 3 Leisure social and cultural 78 83 1 1 activities Accessibility outside the home 7 29 4 2 Social contact 22 24 Total 84 93 1 1 The final column is calculated as the level of
21. experienced onset of any impairments If so an interviewer will call at the household to carry out the full face to face interview Office for National Statistics 4 Life Opportunities Survey User guide to defining and coding disability Disability Discrimination Act DDA and Equality Act 2010 In addition an estimate of people with rights according to the Disability Discrimination Act 1995 DDA is provided Section 1 2 of the DDA generally defined someone as disabled if he or she has a physical or mental impairment which has a substantial and long term adverse effect on her or his ability to carry out normal day to day activities From 1 October 2010 provisions in the Equality Act 2010 EA replaced the majority of provisions in the DDA In general the definition of disability in the EA is similar to that which applied for the purposes of the DDA Unlike the DDA it does not require a disabled person to demonstrate that where their impairment adversely affects their ability to carry out a normal day to day activity that activity involves one of a specified list of capacities such as mobility soeech or the ability to understand The Disability Equality Duty 2006 DED is part of the DDA 2005 and requires public authorities to pay due regard to disability issues when carrying out their functions Its accompanying codes of practice provided good practice guidance on how government departments and other pu
22. getting into buildings 2 moving round inside and 3 using facilities WhichBld Record which buildings the The list of buildings has been chosen through Qualitative testing feasibility Yes respondent has had difficulty getting consultation with the RADAR reference network of trial and pilot into disabled people They have also been qualitatively and quantitatively tested BldAccPr Record various contextual factors The list of contextual factors has been designed through Qualitative testing feasibility Yes environmental social barriers and consultation with the RADAR reference network of trial and pilot personal factors which may be disabled people These are some of the most common contributing to restrictions to reasons given by RADAR members They have also been accessing buildings qualitatively and quantitatively tested Health condition disability are also included as under the ICF body functions and structures interact with contextual factors in the process of participation restriction In addition testing has shown people with impairments or health conditions will often want to answer in this way Services and Policies ServUse Record which services the Under the ICF services systems and policies is not a Qualitative testing feasibility No respondent has dealt with in the past domain of participation rather it is a component of the trial and pilot 12 months environmental factors barriers and facilitators which co
23. he number of individuals with rights according to the Disability Discrimination Act Table 3 Coding of DDA questions Question Response Health Yes i e individual has a long standing physical or mental impairment illness or disability DisDif Individual responds as having a substantial difficulty in one or more area of their life i e DisDif1 Yes or DisDif2 Yes or DisDif3 Yes or DisDif4 Yes or DisDif5 Yes or DisDif6 Yes or DisDif7 Yes or DisDif8 Yes or DisDif9 Yes DDATre_ Yes individual received medication or treatment without which their health problems would substantially affect their life in the areas identified within the DisDif question DisDifP Yes individual has had a long term physical or mental impairment illness or disability that affected their activities Where long term is defined as lasting for a year or more AND DDATreP Yes the health problem or disability identified at DisDifP substantially limited their ability to carry out normal day to day activities If medication or treatment was received the respondent was asked to consider what the situation would have been without medication or treatment DDAProg Yes the individual has been diagnosed with HIV Cancer or Multiple Sclerosis It should be noted that the FRS measure of individuals that are DDA disabled excludes the progressive illness question DDAProg however it will be possible to produce comparable outputs fro
24. ial barriers faced in Britain The ways in which disability is measured in the LOS are detailed below The approach used in the LOS The LOS follows the social model s definition of disability as the social disadvantage experienced by people with impairments For the purposes of the LOS disability is conceived as the interaction between impairments either of body functions or structures and social contextual factors In order to measure the underlying factors associated with disability it is important to collect data on these constructs independently and thereafter explore associations and causal links between them How much information do we need about impairments Following the social model definition it is the barriers to participation which are of interest regardless of the nature or severity of the impairment However Berthoud 2003 and Grundy et al 1999 demonstrate that the experience of disability varies considerably by severity Burchardt 2003 argues that the absence of direct information on the severity of impairment is a significant drawback to survey data because by grouping disabled people together and comparing to the non disabled population we are likely to understate the disadvantage faced by people with severe impairments p 8 This view is outlined in the Improving Life Chances 2005 report There are large differences in impairment experienced by disabled people Because of this generalisatio
25. ife as Was this crime motivated by Feasibility trial and pilot No crime the offender s attitude to any of the following characteristics It was felt that the language used in this wording would not be understood by all respondents particularly those with learning disabilities The current wording is easier to understand but does mean that the responses aren t strictly speaking valid reasons for crime However there is a trade off between writing questions which are theoretically and semantically correct and writing questions which are easily understood Social Contact CloseNum Record whether there are any barriers Pilot only Yes MeetNum or restrictions to participating in MeetOft interpersonal interactions and relationships ICF d710 d799 PrevCont Record various contextual factors Pilot only Yes environmental social barriers and 25 personal factors which may be contributing to restrictions to participating in interpersonal interactions and relationships DDA All questions Measure DDA status These questions are the current standard suite of Feasibility trial and pilot No questions for estimating the population covered by the Disability Discrimination Act DDAProg is included as those three conditions are specifically mentioned under the act regardless of whether they are currently causing substantial difficulties Impairments and Health Conditions All
26. ility Table 1 Impairment cut off points If is greater and is more often than never then the than respondent has SeeClo mild SeeLim lan activity limitation in relation to a visual or difficulty impairment SeeDis HearB mild HearLim an activity limitation in relation to a hearing difficulty impairment SpkDiff mild SpkLim an activity limitation in relation to a speech difficulty impairment MobA mild MobLim an activity limitation in relation to a mobility difficulty impairment DexDiff mild DexLim lan activity limitation in relation to a difficulty dexterity impairment PainLev mild PainLim an activity limitation in relation to a pain impairment CondDiff mild CondLim an activity limitation in relation to a chronic difficulty health condition BrthDif mild BrethLim lan activity limitation in relation to a difficulty breathing impairment LrnDif mild LrnLim an activity limitation in relation to a learning impairment IntelDif mild IntelLim an activity limitation in relation to an intellectual or developmental impairment BevDif mild BevLim an activity limitation in relation to a social or behavioural difficulty MemDif mild MemLim an activity limitation in relation to a memory impairment MenDif mild MenLim an activity limitation in relation to a mental health impairment OthDif mild OthLim lan activity limitation in relation to an other impairment Partici
27. ion underlies the OPCS surveys of disability Martin et al 1988 which define disability as a restriction or lack of ability to perform normal activities which has resulted from the impairment of a structure or function of the body or mind The Social Model This approach challenges the underlying assumptions of the medical model Disability rather than being viewed as an attribute of the individual is repositioned as the disadvantage or restriction of social participation caused by aspects of society which take little or no account of the needs of people with impairments This is described in the Improving Life Chances of disabled people report as follows PMSU 2005 http www cabinetoffice gov uk media cabinetoffice strategy assets disability pdf Office for National Statistics 1 Life Opportunities Survey User guide to defining and coding disability Disability should be distinguished from impairment and ill health disability is defined as disadvantage experienced by an individual resulting from barriers to independent living or educational employment or other opportunities that impact on people with impairments and or ill health A clear distinction needs to be made between disability impairment and ill health Impairments are long term characteristics of an individual that affect their functioning and or appearance Ill health is the short term or long term conseq
28. m the LOS LOS estimates on the prevalence of DDA defined disabled people are based upon people who are currently disabled Overall Disability Prevalence Rates Bajekal et al 2004 conclude that it is critical that users of disability estimates understand how certain differences are generated It is possible that a range of estimates could be published However one of the key outputs Office for National Statistics 9 Life Opportunities Survey User guide to defining and coding disability is an overall prevalence rate of disability understood in the traditional sense as impairment However an important aim of the LOS has been to produce estimates based on a more up to date definition of disability in particular one which draws from the social model and the ICF Comparative approach A social model output has been constructed using a comparative technique where the participation restrictions of people with impairments are compared with those without impairments An adult has a participation restriction if they experience at least one social barrier to taking part in at least one of the following life areas e education and training e employment e economic life and living standards for example being able to afford expenses or make loan repayments e transport e leisure social and cultural activities e social contact e accessibility of housing e accessibility outside the home Examples of social barri
29. minated against the The list of people has been designed through Qualitative testing feasibility No respondent consultation with the RADAR reference network of trial and pilot disabled people They have also been qualitatively and quantitatively tested However they do not represent the most common people who discriminate against others JobAtt Record workplace discrimination This question is a variation of a question translated from a Feasibility trial and pilot No specifically because of a health French Canadian survey and is specifically about 24 condition or disability workplace discrimination due to disability health conditions It is only asked of people currently in work who said in Discrim that they have been treated unfairly because of a health condition disability Crime Crim Record experience of crime This question was developed based on questions from Feasibility trial and pilot No the British Crime Survey BCS in consultation with the Home Office Early versions asked simply have you been a victim of a crime However current approaches ask about specific incidents HCrim Record hate crime The definition provided comes from NISALD Feasibility trial and pilot No HCrimYe Record whether the hate crime was in This is for longitudinal analysis purposes Feasibility trial and pilot No the last 12 months CrimTyp Record the reasons for the hate This question started l
30. ns are often unhelpful Disabled people with different impairments from different socio demographic backgrounds and facing different barriers will have very different day to day experiences We therefore collect some basic information about the severity of impairment alongside experiences of social barriers and participation restrictions In line 3 For example see Living with Disability in New Zealand http www moh govt nz moh nsf pagesmh 3532 Office for National Statistics 3 Life Opportunities Survey User guide to defining and coding disability with the ICF severity of impairment is defined through respondent s reported ability to perform certain physical or mental functions such as seeing hearing walking etc and any level of difficulty with associated daily activities such as reading a newspaper or climbing stairs Defining groups In ICF terminology the LOS will compare the experiences of people with impairments against people without impairments and explore the participation restrictions of both groups The LOS does not equate having an impairment with being disabled A person may have some form of impairment without having any activity limitation and may not be considered or consider themselves as disabled Following the social model disability is understood as the disadvantage people with impairments experience due to barriers that restrict their participation in diff
31. ntribute to participation restrictions This section does not directly measure a participation restriction The main reason for including this section is the 22 usefulness of the data to Government Departments It can also provide more detail on the reasons behind participation restrictions for example a respondent may be limited in the type of work they can do because they have had difficulty accessing the jobcentre either due to the presence of a barrier or the lack of a facilitator DiffHIth Record the level of difficulty These follow up questions are only asked of those Qualitative testing feasibility No DiffJust accessing the service respondents who have contacted the service in question trial and pilot DiffBen in the last 12 months This is because we want to know DiffSpor about actual experiences of service use rather than DiffTax general perceptions of public services DfctHth Record various contextual factors The list of contextual factors has been designed through Qualitative testing feasibility No DfctJust environmental social barriers and consultation with the RADAR reference network of trial and pilot DfctBen personal factors which may be disabled people These are some of the most common DfctSpor causing difficulty accessing the reasons given by RADAR members They have also been DfctTax service qualitatively and quantitatively tested Health condition disability are als
32. o included as under the ICF body functions and structures interact with contextual factors in the process of participation restriction In addition testing has shown people with impairments or health conditions will often want to answer in this way Domestic Life Wash Record various facets of activity This list of activities is based on ICF items from d510 to Qualitative testing feasibility No Toilet Nails limitation set out in ICF chapters Self d699 The questions are similar to a very similar set of trial and pilot Dress Eat care and Domestic life ICF codes questions was asked on the 2000 Psychiatric Morbidity Shop d510 d599 d610 d699 Survey a k a Mental Health and Wellbeing They are PrepMeal also similar to Katz s Activities of Daily Living ADLs Hwork Many health surveys use similar questions HRepair WhoHelp Record who helps a respondent if The list of people has been substantially shortened since Qualitative testing feasibility No they have indicated they need help with any of the activities earlier versions which were seen as too intrusive by respondents in the qualitative testing The question asks trial and pilot 23 can just check because it may be that the person needs help but is not receiving it OftenHlp Record frequency of help Early drafts of this question asked only about frequency Qualitative testing feasibility No of
33. pation restrictions This area of the ICF covers the barriers an individual may experience in participating in life situations Participation restrictions may be related to an impairment or activity limitation for example someone with a mobility impairment may be prevented from finding a suitable job because an employer has not made reasonable adjustments Alternatively participation restrictions may be due to factors unrelated to impairment for example someone may be too busy with family responsibilities to take up work Office for National Statistics 7 Life Opportunities Survey User guide to defining and coding disability An output based on this area alone is not an output of disability since it will pick up on the restrictions of both impaired and non impaired people It is more akin to an index of social disadvantage regardless of impairment status However combined with information on impairments this output is essential for producing social model analysis Questions that would feed into to this area are found throughout the main sections of the LOS questionnaire Table 2 Life areas that feed into participation restriction measures Variable indicates a participation restriction ICF code relating to Learn Education d810 d839 Work Seek NoWrk Work and Employment d840 d859 EndsMeet Economic Life d870 VclOut VclMuch Using private motorized transportation d4701 LB
34. the person while another aspect is almost entirely external In other words both medical and social responses are appropriate to the problems associated with disability we cannot wholly reject either kind of intervention In developing the LOS questionnaire we learned from the extensive international work that has been carried out to implement the ICF in other countries This has been useful for standardising international comparisons on outcomes for people with impairments which is of increasing importance See UN Statistics Division http unstats un org unsd methods citygroup washington htm Office for National Statistics 2 Life Opportunities Survey User guide to defining and coding disability following the UK s ratification of the UN Convention of Rights of Disabled People Our methods of classifying impairments are compatible with this approach Some countries which have adopted the ICF framework have however defined disability through severity of impairment and the language used such as having a disability locates disability as an attribute of the individual similar to impairments As outlined above in the analysis of the LOS we do not equate disability status with prevalence of impairment alone Through involvement of a Reference Group of disabled people we have considered the social and environmental topics outlined in the ICF Framework and developed expanded and tailored these to the common soc
35. tion without assistance The LOS questionnaire does not currently have questions to measure ability without assistance so only the performance qualifier can be coded d330 This is the code for speaking d330 0 NO difficulty speaking d330 1 MILD difficulty speaking d330 2 MODERATE difficulty speaking d330 3 SEVERE difficulty speaking d330 4 COMPLETE difficulty speaking d330 8 Not specified d330 9 Not applicable Coding participation restrictions The ICF uses the same qualifiers for participation restrictions as for activity limitations however most of the questions in the LOS questionnaire do not allow for a 5 point breakdown as they tend to be yes no questions For example LearnLim asks whether the respondent has access to all the learning opportunities they want rather than how much difficulty the 28 respondent has accessing all the learning opportunities they want Unless the questions are changed to accommodate a severity scale use of the ICF qualifiers are limited for this area Coding environmental factors Environmental factors should be coded with reference to the relevant component of functioning For example if someone experiences cost as a barrier to transport this could be coded as d4702 e1650 where d4702 is the code for using public motorized transportation and e1650 is the code for financial assets 29
36. tivity was asked about ina separate question with a showcard indicating four possible outcomes 1 don t do this activity and don t want to 2 don t do this activity but would like to do it 3 do this activity as much as want to 4 do this activity but would like to do it more often The problem with this question was that people may say they don t want to do an activity precisely because of the barriers they face That is they have been conditioned to accept their restricted situation their expectations have changed and within these new parameters they do not want to do an activity LifeOppA asks the respondent to think about what they would like to do in an ideal world as an attempt to get Previous approach qualitative testing and feasibility trial New approach pilot only Yes 19 them to think about their situation without barriers LifeOppB asks about their current participation Comparing answers to the two questions reveals where respondents don t currently do activities they would like to or where they don t do activities as much as they would like This also means we can ask about more activities with less questions It is likely that many people will reveal they don t do some activities as much as they want for example going on holiday However the analysis of these questions will be done at the aggregate level allowing comparisons to be made across diversity strands
37. uded as under the No qualitative testing as of Jan Yes records various contextual factors ICF body functions and structures interact with 09 Proposed to be tested environmental and social barriers contextual factors in the process of participation alongside disability which may be contributing to a restriction In addition testing has shown people with harmonisation project Was run participation restriction impairments or health conditions will often want to answer on the February Pilot in this way ICFChild This is a variation of ICFLim The only No qualitative testing as of Jan Yes difference is that Work has been 09 Proposed to be tested replaced with Leisure or Play but the alongside disability purpose is the same ICF CY codes harmonisation project Was run d810 d839 d920 d450 d489 d710 on the February Pilot d779 ICFWhyC This is a follow up to ICFChild there No qualitative testing as of Jan Yes are no differences in its purpose or 09 Proposed to be tested wording alongside disability harmonisation project Was run on the February Pilot Learning Learn Record whether there are any barriers This question hasn t changed much since the first draft Qualitative testing feasibility Yes to learning or in ICF language although some minor changes were made following trial and pilot 15 participation restrictions to learning ICF code d810 d839 qualitative testing
38. uence of disease or sickness Many people who have an impairment or ill health would not consider themselves to be disabled The Life Opportunities Survey adheres to this model in its design and reporting Data is collected on impairments but unlike the previous OPCS surveys this is not equated with disability status The survey explores the barriers to life opportunities that people both with and without impairments face and then assesses the extent of additional disadvantage experienced by people with impairments due to the range of social barriers discrimination or lack of support assistance and adjustments ICF The Biopsychosocial Model The International Classification of Functioning Disability and Health ICF was developed by the World Health Organisation WHO in response to the social model s critique of the ICIDH ICF attempts to bridge the gap between the medical and social models through the inclusion of the social context of disability The ICF guide WHO 2001 states Previously disability began where health ended once you were disabled you were in a separate category We want to get away from this kind of thinking We want to make ICF a tool for measuring functioning in society no matter what the reason for one s impairments Disability is always an interaction between features of the person and features of the overall context in which the person lives but some aspects of disability are almost entirely internal to
39. uide Authors Authors Joe Cuddeford Fiona Glen Joanna Bulman Office for National Statistics 1V Life Opportunities Survey User guide to defining and coding disability Introduction A variety of definitions of disability can be coded from the Life Opportunities Survey LOS This paper discusses how the LOS data can be used to produce a range of key disability estimates Defining Disability This section outlines the approach taken by the LOS for defining disability The definitional challenges are discussed through a summary of the main conceptual models of disability The approach taken was to design a survey which is compliant with the social model and provides a robust data source for understanding the multi dimensional and dynamic nature of disability Conceptual Models of Disability The Medical Model This approach to disability locates the problem within the individual The medical model defines disability with reference to what is wrong with the person and how they are thought to differ from what is normal The focus is on curing or caring for disabled people with the implication that the way to overcome barriers to inclusion is to alter the individual to fit better into society Early attempts by the World Health Organisation WHO to standardise concepts and definitions resulted in the International Classification of Impairments Disabilities and Handicaps ICIDH in 1980 This definit
40. us LTrain etc Using public motorized transportation d4702 LifeOppA LifeOppB Community leisure and civic life d910 d950 GetHome InOut Moving around within the home d4600 IntoBld ThruBld Moving around within buildings other d4601 than the home CloseNum MeetNunm Interpersonal interactions and d710 d799 MeetOft relationships In some cases the follow up questions on contextual factors will need to be examined in order to filter out cases where a respondent doesn t participate in an area of life because they simply don t want to For example when asked what is stopping you from going to museums or places of historical interest respondents can choose do not want or need to Coding DDA outputs A suite of questions to capture DDA disability have been included in the LOS questionnaire which enables analysis of the number of individuals that are likely to have rights under the act The LOS DDA output will provide a useful comparison with other surveys which include the DDA questions for example See appendix 2 for more information about using the ICF coding scale Office for National Statistics 8 Life Opportunities Survey User guide to defining and coding disability the Family Resources Survey FRS as well as the ability to compare the DDA population against the LOS social model definition of disability Combining responses to the DDA questions as indicated in the table 3 below will allow calculation of t
41. vere and four being most severe This has primarily been based on responses to questions asking about respondent s level of difficulty in each of the 14 areas of physical or mental functioning For example their reported level of difficulty with climbing stairs reading a newspaper at arms length or remembering things In recognition that people have fluctuating impairments with different levels of frequency the classification of severity of impairment has also taken into account the frequency of activity limitation For example whether the respondent has difficulty with activities related to mobility rarely sometimes often or always To give an example a respondent with a mild level of difficulty with activities related to mobility which they experienced rarely sometimes or often would be coded into severity category one Respondents with a mild level of difficulty with mobility that they experienced always are coded into severity category two Northern Ireland Statistics and Research Agency 2007 The Prevalence of Disability and Activity Limitations amongst adults and children living in private households in Northern Ireland 10 This differs from the NISALD impairment definition as those who have indicated that they had a number of mild difficulties with each limiting their activities sometimes are excluded Sight hearing speaking mobility dexterity long term pain breathing learning intellectual
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