Carers and work final report 2010

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Carers and work final report 2010

  1. 1. A REPORT FOR BIRMINGHAM CITY COUNCIL CARERS’ COMMISSIONER Carers and work A study looking at barriers and aids to returning to or staying in work,for carers or recent carers, including pointers for the development of a support pathway Lesley Pattenson and Steve Bedser July 2010
  2. 2. Carers and Work – a report for Birmingham City CouncilCONTENTSEXECUTIVE SUMMARY ............................................................................................ 7Summary of key pathway pointers ............................................................................. 8 General Services for Carers ................................................................................... 8 Opening Doors for Carers (Crossroads) ................................................................. 9 Reality and Sensitivity........................................................................................... 11 Early Skills Building .............................................................................................. 11 Employment .......................................................................................................... 13 Other factors affecting employment prospects ..................................................... 14 Creative Pathways and Outcomes........................................................................ 14 Other Best Practice Issues ................................................................................... 15INTRODUCTION AND BACKGROUND................................................................... 16 The commission brief ............................................................................................ 16 Pre-existing research ............................................................................................ 16The research methodology ....................................................................................... 16 The carers‟ experience ......................................................................................... 16 Recruiting participants ....................................................................................... 17 Characteristics of the cohort of participants ...................................................... 17 Interviews .......................................................................................................... 18 Findings and analysis ........................................................................................... 19 Employers and employer support agencies .......................................................... 19THE CARERS‟ RESPONSIBILITIES AND IMPLICATIONS FOR WORK ................ 20Caring responsibilities .............................................................................................. 20 Parent-carers of children under 18 ....................................................................... 20 Transition to adulthood ...................................................................................... 21 Parent-carers of adult children .............................................................................. 22 Carers of partners ................................................................................................. 23 Carers of parents or other older relative ............................................................... 23 Planning for and following death of cared for person ........................................ 23 Multiple caring roles .............................................................................................. 24DIVERSITY AND PERSONAL CHARACTERISTICS OF THE CARER AND THEIMPLICATIONS FOR WORK ................................................................................... 25 Gender.................................................................................................................. 25 Partnership status ................................................................................................. 25 Lone parents/ carers ......................................................................................... 26Lesley Pattenson and Steve Bedser 2
  3. 3. Carers and Work – a report for Birmingham City Council Relationship breakdown .................................................................................... 26 Residency in relation to the cared-for person ....................................................... 27 Age ....................................................................................................................... 27 Disability (of carer) ................................................................................................ 27 Sexual orientation ................................................................................................. 28 Ethnicity and country of origin ............................................................................... 28 Language.............................................................................................................. 29 Faith and culture ................................................................................................... 30BARRIERS TO AND / OR FACILITATORS OF POTENTIAL FOR PAID WORK ..... 31 Recognition and acceptance of the carer role ...................................................... 31 Attitude to caring ................................................................................................... 32 Motivation for seeking / retaining paid work .......................................................... 32 Fears and concerns about juggling caring and work responsibilities .................... 34 Good organisation of work and home / domestic life ............................................ 35FINANCIAL FACTORS IMPACTING ON CARERS GETTING OR STAYING INWORK ...................................................................................................................... 37 Maximising income – to work or not to work? ....................................................... 37 Benefits advice ..................................................................................................... 38 Carer‟s Allowance ................................................................................................. 39FORMAL AND/OR ALTERNATIVE CARE ARRANGEMENTS ................................ 41 Statutory service provision .................................................................................... 42 Social Services.................................................................................................. 42 Children and Family Services ........................................................................... 42 Domiciliary care................................................................................................. 42 Day centres ....................................................................................................... 43 Education and school holiday schemes ............................................................ 44 Transport ........................................................................................................... 45 Health services.................................................................................................. 45 Direct Payments ................................................................................................... 46SUPPORT FOR CARERS ....................................................................................... 50 Formal support ..................................................................................................... 50 Carer‟s Assessment.............................................................................................. 50 Carer support agencies ........................................................................................ 51 Carers‟ Emergency Response Service – CERS ............................................... 52 Birmingham Carers‟ Centre ............................................................................... 53 Funded carer support schemes......................................................................... 54 Carer and parent-carer support groups ............................................................. 55 Condition specific support groups ..................................................................... 56Lesley Pattenson and Steve Bedser 3
  4. 4. Carers and Work – a report for Birmingham City Council Multiple support agencies and networks ............................................................... 57 Informal support networks .................................................................................... 57 Family ............................................................................................................... 57 Friends .............................................................................................................. 58 Faith and cultural groups ................................................................................... 59MOVING TOWARDS WORK-READINESS ............................................................. 61 Access to information ........................................................................................... 61 Libraries ............................................................................................................ 62 Internet .............................................................................................................. 62 Informal sources................................................................................................ 63 Via service providers ......................................................................................... 63 A one-stop shop ................................................................................................ 64 Guidance and support .......................................................................................... 65 Careers advice .................................................................................................. 65 Mentoring or life-coaching ................................................................................. 65 Confidence building........................................................................................... 66 Language support ............................................................................................. 67 CV development and job applications ............................................................... 67 Other support .................................................................................................... 68 Unpaid work/ Volunteering .................................................................................... 68 General voluntary work ..................................................................................... 68 Volunteering in a workplace setting................................................................... 69 Unpaid work placements as part of a training course........................................ 70 Education and training .......................................................................................... 70 Previous educational attainment ....................................................................... 70 Training ............................................................................................................. 71 Guidance on accessing training ........................................................................ 72 Adult Education Centres and courses ............................................................... 73 Open University (OU) ........................................................................................ 74EXPERIENCE OF SUPPORT TO GET WORK, OR WORK-READY....................... 75 Opening Doors for Carers (Crossroads) Project ................................................... 75 Job Centre Plus (JCP) .......................................................................................... 75 Experience with other agencies ............................................................................ 79 Ingeus / Work Directions ................................................................................... 79CONSIDERATIONS FOR CHOICE OF EMPLOYMENT FOR CARERS ................. 81 Type of work sought ............................................................................................. 81 Educational assistants ...................................................................................... 81 Counselling and therapeutic roles ..................................................................... 81Lesley Pattenson and Steve Bedser 4
  5. 5. Carers and Work – a report for Birmingham City Council Other caring roles.............................................................................................. 82 Professionals..................................................................................................... 83 The ideal employer ............................................................................................... 83 Openness about caring responsibilities and employer response ...................... 84 Local to home.................................................................................................... 85 Part-time post .................................................................................................... 85 Hours and start and finish times ........................................................................ 86 Term-time working in school hours ................................................................... 86 Shift working ..................................................................................................... 86 „Zero hours‟ contracts........................................................................................ 87 Trial or probationary periods or short term contracts ......................................... 87 Flexibility to take time off for crisis events or planned appointments ................. 88 An understanding manager and supportive colleagues .................................... 88 Good organisational and employment policies .................................................. 90 Staff support ...................................................................................................... 91 Home working options....................................................................................... 91ALTERNATIVES TO DIRECT EMPLOYMENT ........................................................ 93 Agency and locum work........................................................................................ 93 Self-employment as sole trader ............................................................................ 93 Setting up a small business .................................................................................. 94 Home-based contracts for services ...................................................................... 95 Informal economies and creative opportunities .................................................... 95 Social enterprises ................................................................................................. 96INFORMATION GATHERED FROM EMPLOYERS AND EMPLOYMENT SUPPORTAGENCIES............................................................................................................... 97 Support for carers seeking employment ............................................................... 97 Job Centre Plus (JCP) ...................................................................................... 97 Ingeus ............................................................................................................... 97 Care through the Millennium - Case Study of Best Practice ............................. 98 Working Neighbourhoods Fund......................................................................... 99 Disability Employment Solutions (Birmingham City Council) ........................... 100 Pertemps People Development Group............................................................ 100 The Learning Hub ........................................................................................... 101 Groundwork West Midlands ............................................................................ 101 Fircroft College of Adult Education and Newman University College .............. 101 Freshwinds ...................................................................................................... 101 ASDA (Barnes Hill).......................................................................................... 102 Support for carers starting self-employment ....................................................... 102Lesley Pattenson and Steve Bedser 5
  6. 6. Carers and Work – a report for Birmingham City Council Business Link .................................................................................................. 102 Business Insight - Birmingham Central Library ............................................... 102 Support for carers already in employment .......................................................... 103 Trade Unions................................................................................................... 103 Statutory Employment Rights for Carers ............................................................ 103 Other background information ............................................................................ 104 Carers UK Report – Who Cares Wins ............................................................. 104 Crossroads Report – Juggling Work and Care ................................................ 104AREAS FOR FUTURE INVESTIGATION AND DEVELOPMENT .......................... 105 Strategic approach to developing carer support ................................................. 105 Networking and information sharing ................................................................... 105 Direct Payments ................................................................................................. 105 Collective approach to developing businesses or home-working opportunities .. 105 Parent-carers of children with Autism Spectrum Disorder .................................. 106 Faith groups ........................................................................................................ 106APPENDIX 1: OTHER RESEARCH ....................................................................... 107 “Carers‟ aspirations and decisions around work and retirement” Department of Work and Pensions Report 290 – Summary....................................................... 107 “Employment Support for Carers” - September 2009 ......................................... 110 “Understanding workless people and communities: A literature review” ............. 111 “Provisions for people with strokes in rural communities”, 2009 - The Institute of Public Policy Research report for the Rural Commission ................................... 111APPENDIX 2: RECRUITMENT .............................................................................. 112APPENDIX 3: PARENTS VIEWS COUNT MEETING - GROUP DISCUSSION,FEBRUARY 2010 ................................................................................................... 113APPENDIX 4: INTERVIEWEE PROFILES ............................................................. 114APPENDIX 5: LINES OF ENQUIRY....................................................................... 117APPENDIX 6: ORGANISATIONS PROMOTING THEMSELVES AS OFFERINGSUPPORT TO CARERS AND PARENT-CARERS ................................................ 119APPENDIX 7: THE CONSULTANTS ..................................................................... 120 Lesley Pattenson ................................................................................................ 120 Steve Bedser ...................................................................................................... 120Lesley Pattenson and Steve Bedser 6
  7. 7. Carers and Work – a report for Birmingham City CouncilEXECUTIVE SUMMARYThis report highlights the very significant challenges facing a carer as they attempt tobalance their caring responsibilities with employment. The report draws evidencefrom a series of interviews conducted with carers from Birmingham in early 2010,and showcases a number of interventions from a range of agencies. In particular thereport provides evidence that has implications for Birmingham City Council in itsstrategic intent to promote the economic well-being of carers, informs the future roleof Crossroads and its Opening Door for Carers project, as well as capturing rich datathat has more general implications for carers‟ services.Carers are a diverse community, with differing individual needs. As such, there is noreason to expect that the support needs for a carer seeking work will be any lesscomplex, and this highlights the need for personalised support packages, sensitive tothe individual circumstances of the carer (and cared for). Our interviews with carershave already highlighted how, all too often, misjudged interventions can createbarriers for carers seeking to become economically active.Carers come from a range of socio-economic backgrounds and have differing skillsand experience. However, it is useful to broadly categorise carers seeking work asfollows:  Carers who have been economically inactive for a considerable time, with little formal work history and few formal work-related qualifications.  Carers who have an economically useful skill, qualification or profession, but have taken a break from working to prioritise caring responsibilities and now wish to return to the world of work.  Cares who recognise that their current caring responsibilities prohibit a conventional employment role, but who wish to be economically active in some way.  Carers who are in employment, but who need support to balance their caring responsibilities alongside their contractual commitments.  Carers who do not wish to become economically active. For example, some carers might be at or near to retirement age and do not view employment as an appropriate option.Clearly, these categories are neither exhaustive nor mutually exclusive, but it sets auseful framework for prioritising action to meet the needs of carers.In the course of our research we identified some common barriers to employment:  Lack of work related skills  Lack of work related qualifications  Lack of formal work experience  Low confidence/self-esteem  Onerous caring commitments provided for limited availability for work  Lack of confidence in the availability, quality and reliability of alternate care provisionLesley Pattenson and Steve Bedser 7
  8. 8. Carers and Work – a report for Birmingham City Council  Inability to prioritise action to return to work above immediacy of caring responsibilities  Lack of support and advocacy to guide people back to work  Lack of access to advice about financial consequences of starting work (in respect of benefits) and consequential cost of alternate care arrangementsWe also looked at the pathway for carers seeking to (re)enter employment andidentified a number of options for them to consider:  Status Quo – any other options are too challenging or unfeasible with current caring responsibilities  Move towards work-readiness through training and personal development  Gain (additional) work-related qualifications  Identify potential employers who are able to offer flexible terms and conditions which match caring responsibilities  Identify alternate caring arrangements which generate more opportunity for economic activity  Identify opportunities for home working  Identify opportunities for self-employment  Identify opportunities for volunteeringOur research prompted a series of observations which we have recorded as pathwaypointers. They are highlighted in the text at the relevant part of the report, but forease of reference, they are grouped together in broad categories and summarisedbelow.Summary of key pathway pointersGeneral Services for Carers Need for better co-ordination There appears to be a large number of organisations which offer services to carers, either as part of their core role, as an element of their service provision to a particular target audience (e.g. BME community associations) or indirectly through a type of service provision which is beneficial to carers, amongst others. Consequently there is a complex network of advice, service and support that is difficult to map and even more difficult to navigate. There is a need for systematic review that would enable ease of access and cross-referral according to individual needs, but there is also scope to re-think carer related investment. We pose the question, is it better to fund (at a relatively low level) a diverse range of organisations to programme carers into their work stream or is it more effective to commission a single, carer-focussed service that has diversity at its heart? In any event, some form of widely accessible directory or database would be a good place to start, but it needs to be proactively used rather than being a list that sits on a web page, waiting for the right people to find it. Need for specialist expertise There is an undoubted need for a central repository of information and expert guidance, specific to carers. This service should recognise the limitations of itsLesley Pattenson and Steve Bedser 8
  9. 9. Carers and Work – a report for Birmingham City Council own expertise and be adept at making referrals to other specialist organisations in other fields where appropriate, but maintain responsibility for the progress of the individual through regular contact and review. The expert role could be combined with an advocacy role, championing carers and challenging as a critical friend in the wider pool of employment related services. Protocols to be in place for:  Sharing and updating information between organisations  Sign-posting to other agencies  Referral to other agencies  Joint briefings and training on carer related issues Provision of forums for friendship, mutual support and information exchange There is a hierarchy of need amongst the carers we have interviewed that starts with some very basic issues. Social isolation and lack of confidence are common factors and tackling these is an early prerequisite if the ambition of economic activity is to be realised to its full potential. Many carers use such forums as a first point of access for information. Where such services exist, they need to be better publicised. Where they do not, they need to be developed. Routine referral to Job Centre Plus (JCP) Carers’ Champions The current policy framework for JCP provides a significant resource for carers who are contemplating employment, or who are working fewer than 16 hours per week. Whilst this prioritisation remains in force, routine referral to JCP Carers‟ Champions would seem to be an obvious element of any pathway at an early stage in the support of any carer meeting these criteria. (JCP cannot support carers who need advice and support with a caring related issue that affects their current employment; they can be directed to ACAS [Advisory, Conciliation and Arbitration Service], CAB [Citizens‟ Advice Bureaux]), trade union or employment law specialist. Tailored, high quality advocacy Each of the carers we interviewed had their own personal story. If the ambition is to maximise economic outcomes for the caring population, the skills required to get the best out of carers as a group will be complex. Services directly concerned with carers and employment need to engage with each individual carer and rapidly understand, empathise and advise them, according to their own needs, caring responsibilities and family circumstances. The service providers will also need to be able to interface with other agencies and be effective advocates, promoting high awareness for the complex needs of individuals and the carer population as a whole. Inevitably, there will be occasions when services fail to match themselves sufficiently closely to the needs of the individual. In such circumstances there will be the need for encouragement, support, tenacity and diplomacy. A gold standard service is required for maximum success.Opening Doors for Carers (Crossroads)Instinctively, we are certain that there is an important and pre-eminent role forOpening Doors for Carers (ODfC) in the process of enabling carers to take upLesley Pattenson and Steve Bedser 9
  10. 10. Carers and Work – a report for Birmingham City Councilemployment. We observe dedicated, compassionate individuals who makestrenuous effort with very modest resource. Our concern is to make suggestionswhich might enable the most effective use of limited capacity and createopportunities to help more carers in more substantial ways. Need for greater awareness of service Very few of our interviewees had heard of or engaged with ODfC. Where appropriate, many of them were referred to the service at the end of the interview process. We have come across numerous occasions where ODfC would be the obvious agency to link carers into, and we would recommend a systematic review of how ODfC promotes itself to carers and carer related organisations. Potential to be pivotal It is obvious to us that, suitably visible and sufficiently resourced, ODfC could play a pivotal role in the pathway for carers, facilitating important outcomes for individuals. We would recommend a review of the purpose of the service and a rethink of what elements should be directly provided by ODfC and which should be sourced from third parties with particular expertise. ODfC should retain an oversight role to ensure quality of offer and supportive redress when things (often) don‟t go according to plan. Need for redesign (of pathway and function) There is a need to map the pathway(s) that might enable the transition of carers towards employment. These will not be linear, and will often require several strands to operate in parallel. If the pathway could be codified on paper (or as an e-resource) it would provide a valuable tool for ODfC, their client group and ancillary services alike. There are two aspects of pathway which operate in tandem; firstly the steps any individual will need to take to achieve their aspirations and goals and secondly the sequence of organisations which will need to be engaged to advise and support them on this journey. ODfC are in a strong position to provide this support through a personalised case management system which aims to enable and empower the carer to meet their individual goals. Need for greater clarity about purpose and strategic fit It is our view that if ODfC attempts to provide a total, one stop service, it will not achieve its full potential in two material ways. Firstly, an all encompassing service provision would severely limit the number of individuals who could be assisted within available resources. Secondly, it could compromise the quality of the service, by operating outside of its core area of expertise. We recommend that ODfC re-orientate itself away from „doing‟ activity and towards a strategic, enabling role. It might also be necessary to offer differential levels of services according to the potential of an individual to achieve and sustain employment. ODfC might adopt a „triage‟ approach, allowing for the prioritisation of clients with the most potential for economic activity, signposting others to alternate services, better matched to their needs. It occurs to us that the advent of a new worker, combined with the finalisation of this report, creates an opportunity for a fundamental review of ODfC within a rigorous business planning framework. This process would need to be supported by a robust critical friend.Lesley Pattenson and Steve Bedser 10
  11. 11. Carers and Work – a report for Birmingham City Council It is relevant to add here that carers have significant support needs not just in seeking work but in sustaining work too. It is critical that agencies that see themselves as having a role to play in this field do not exclude carers already in employment from their remit. We know from our interviews that maintaining work in the face of conflicting pressure from caring responsibilities is a key concern of many.Reality and Sensitivity Sensitive direction about aspiration versus reality check Some carers might aspire to an employment arrangement that might not be feasible. This could be in terms of type of role, degree of flexibility or level of remuneration (amongst others). Good advice to carers will include the ability to sensitively challenge unrealistic expectations and give positive direction to more credible employment scenarios, or direct them to alternatives such as home- working, freelance arrangements, informal economies or voluntary work. Proper audit and advice about whole household’s financial circumstances A significant number of carers are in receipt of Carer‟s Allowance and/or some other form of means tested benefit. Additional complications arise when the cared for person is in receipt of benefit combined with the consideration of additional income from other members of the same household. We do not profess to understand the detail of the issue, but it is readily apparent that, at an early stage, there is a need to properly audit the income of the entire household, so that carers can make informed decisions about how many hours to work and what level of income to aspire to through a „Better off‟ calculation. There may well be circumstances where the net change in household income is too low to justify a move to employment (although for many of our interviewees, increased income was not the most important motivation for seeking work) or, worse still, where the household income might decline. Careful attention should be given to the cost consequence of sourcing additional, paid caring support to substitute for the carer when out at work. Develop appropriate ways of talking about the death of the cared for person (before and after) In some cases, the death of a cared for person might be the event that makes employment a feasible option. Whilst recognising the obvious sensitivity of this issue, it would appear that sometimes, sensitivity may have morphed into paralysing taboo. There is a need to create a culture that finds appropriate ways to talk about the death of the cared for person, both in advance and after the event. To ignore the issue only serves to undermine any progress that a carer might want to make.Early Skills Building Confidence The issue of confidence and self-esteem affects carers in a general way and has the capacity to affect more than just their employment prospects, for example,Lesley Pattenson and Steve Bedser 11
  12. 12. Carers and Work – a report for Birmingham City Council securing better services for the cared for person and improving their own mental health. Many of the services targeted at carers address the confidence need of their client group either directly or indirectly. It is certain that many carers who have the potential to be employed exclude that possibility as a consequence of their low confidence and low self-esteem. Any service seeking to support carers into employment should recognise this and, in tandem with a service that sets out to support more motivated individuals who have presented with an aim to seek employment, set out to build confidence amongst a wider group (possibly targeted at demographic priority groups) at a pre-employment readiness stage. Advocacy Some of the carers we interviewed identified the dilemmas faced in employment against a back drop of significant caring responsibility, either as an employee or a job applicant. There will be occasions when the advocacy of a third party could materially assist in the negotiation of more flexibility in reaction to changing circumstances or from the outset of an employment relationship. Such advocacy also has an important role to play with employment support organisations that might not have expert knowledge of the issues affecting carers. It may also be crucial in securing additional or alternative support for the cared for person in order to release the carer‟s time to pursue training or employment. We recommend that advocacy is a function central to any service supporting carers in or into employment. Basic information We identified that there were often crucial gaps in the knowledge of carers about some very basic issues. In tandem with this, we observed a lack of consistency in the application of the Carer‟s Assessment and variable experience in following through the outcomes of any individual assessment whether for themselves, or the cared for person. It is unlikely that, in the absence of minimum standards of basic support, a carer would be in a position to seek to make the challenging transition from full-time caring into some kind of employed role. The need to cover the expense of any pre-employment activity The financial circumstances of carers are often extremely modest. Incurring cost of any kind, prior to increased income through employment, is likely to create an insurmountable barrier. Carers need to be supported to identify ways in which any pre-employment expenses are met. We have evidence that some carers have realistic (in terms of their ability and potential) aspirations to obtain qualifications that would secure employment (e.g. NVQ Level 3 to become a classroom assistant) but lack the resources to complete the courses that would achieve such qualifications. Given that such courses cost hundreds, rather than thousands of pounds, we see the potential to pilot a scheme that gives affordable, interest-free loans to carers that can be paid back in a manageable way once in employment. Such a scheme should have relatively strict criteria to ensure mutual success. The provision of a loan should be contingent on a realistic assessment of a likely successful outcome and, perhaps, should be targeted to demographic groups where the achievement of employment would be more likely.Lesley Pattenson and Steve Bedser 12
  13. 13. Carers and Work – a report for Birmingham City CouncilEmployment Need to identify flexible employers The carers we interviewed reported a hesitance to disclose their caring responsibilities during the process of recruitment, fearing that they might be discriminated against, with one interviewee citing actual examples of such discrimination taking place. There is the potential, through a systematic piece of work, to identify (perhaps larger) employers that have the capacity to accommodate the flexibility sometimes required by working carers1. A number of potential flexible schemes were identified ranging from zero hours contracts, term-time working, trial periods, late starts, condensed weeks (full-time hours in four working days), opportunities to catch up missed time by varying hours or taking some work home. Actively promoting examples of good practice would give carers the confidence to apply to those employers, safe in the knowledge that some level of awareness already existed in the employing organisation. Opportunity to develop good practice check list In tandem with the above, we think that a good practice check list should be developed, so that employers have a clear understanding of the potential needs of their employees. The ability to promote good practice would be helpful in removing the pressures from a carer who faced the need for support from their employer at the moment of crisis. Transparent policies and procedures, already in place, would greatly assist both employer and employee, as well as enabling the carer to make an informed judgement about the suitability of an employer at the pre-employment stage. Potential to develop an Employers Index, based on Stonewall model We note the success of the Stonewall Diversity Index, which has transformed the workplace environment for LGBT (lesbian, gay, bisexual and transgendered) employees over a few short years. Blue chip companies and other major employers now compete for the accolade of being ranked in the top 100 employers. We see the potential for a similar scheme to transform the work prospects of carers either, in a modest way within the Birmingham economy, or, to greater effect, through the stimulation of a national model, perhaps in partnership with a national carers‟ organisation. Ensure CERS (Carers Emergency Response Service) registration early on It is readily apparent that CERS offers a robust service that provides very significant support to carers and could ease the fears of those in or contemplating employment. Not all of the carers that we talked to were aware of, or registered with the service. We recommend that this should be considered at an early stage of any individual pathway. We would also suggest a review of eligibility for support to extend the circumstances in which support was provided so that short-term cover where the carer is suddenly incapacitated at home could also be offered.1 We have been advised that the terms of the European Union Working Time Directive allow a degree of flexibilitywhich may help accommodate the needs of carers; some employers may not be aware of this.Lesley Pattenson and Steve Bedser 13
  14. 14. Carers and Work – a report for Birmingham City CouncilOther factors affecting employment prospectsCaring responsibilities often run alongside other factors that affect the employmentprospects of an individual. This generates additional complexity that should be takeninto account. Such factors include: Lone parenting A number of the interviewees were single parents. While presenting further challenges for the carer wanting to work, additional routes to support into employment may also be open to these carers as a result of their lone parent status, and these should be exploited where they exist. Disability Similarly, disability may impose both restrictions and opportunities through any training or employment support initiatives targeted at people with disabilities; many of the interviewees had significant health problems of their own. Childhood transition In particular, for carers of children, we recommend that in parallel with assessments for childhood transition of the cared for, a separate assessment is made of the needs of the carer. Childhood transition is a critical juncture that will have impact on the employment prospects of a carer. For some, it will make seeking employment more feasible if caring responsibilities can be reduced through the young adult securing more independence through college or work themselves. For others it will make sustaining employment more challenging, with the imminent withdrawal of schooling (and by implication respite time for the carer). For yet others, it could generate novel opportunities. For example, we see the potential to develop the concept of dual employment for parent and cared for young adult. Many of the parents we talked to had responsibility for an autistic child. We can envisage circumstances that would create meaningful employment for both parent and child with the merit of the parent being on hand in the same workplace in the event of unpredicted emergency. Assessment and advice on the implications and potential for the carer should therefore be integrated into the childhood transition support package.Creative Pathways and Outcomes Not a straight line – some things need to happen in parallel It should not come as a surprise that, given the complexity of individual caring situations, a linear design of a pathway into work would be inappropriate. Different people will need different interventions, at different times. It will not be unusual for a carer to benefit from several different strands of support at the same time. Sometimes employment is not the appropriate outcome and carers may benefit from sign posting into other directions There will undoubtedly be occasions where a carer might present seeking employment but, upon closer inspection, employment might not be the appropriate outcome. It should be the goal of supporting organisations to empower the carer to identify the most suitable outcome for themselves and to signpost accordingly. To attain work, a period of study may be required, or it may be more appropriateLesley Pattenson and Steve Bedser 14
  15. 15. Carers and Work – a report for Birmingham City Council to establish self-employment. There is the potential for this to conflict with some employment support agencies if they are rewarded on the basis of job outcomes. Expert agencies, such as ODfC need to be vigilant that carers are not overly directed into work and seek to rectify the commissioning environment if the commissioning structure works against the best interests of carers. Early and frequent review will ensure ongoing success and provide a structured, supportive framework We frequently came across individuals who were highly motivated to seek work, but, by their own estimation, were easily knocked off track by the day-to-day reality of their caring responsibilities. Carers seeking employment need early and frequent review in the context of a supportive coaching and mentoring relationship with a third party. This creates the potential for realistic goal setting and ongoing encouragement to make progress towards work by organising this support through a casework management system.Other Best Practice IssuesA number of issues were identified in the course of the study which fall outside thescope of any pathway supporting carers in or into work, but which would benefit fromthe attention of relevant service providers and commissioners.  Developing awareness of carers‟ issues and services within BME community specific services.  Particular complex and challenging needs of carers who are asylum seekers and refugees as well as migrant European nationals who may experience cultural and/or linguistic barriers as well unfamiliarity with national and local systems and structures.  Particular complex and challenging needs of carers who have English as a second (or third) language.  Lack of a consistent approach to Carer‟s Assessment and subsequent follow- up.  Variable experience of Direct Payments. Many carers told us about negative experiences generating a significant level of mistrust. However, we also recorded some extremely positive examples of how Direct Payments have benefitted carers and cared for alike. There is potential for carers to be recruited to deliver paid care to others through the scheme  Sustainable alternate caring arrangements. This is a dominant issue that dramatically constrains the ability of carers to make regular commitments outside of their caring role. In particular, we noted the impact of closures of day centres on carers of adults, and the increased caring responsibility for parent-carers during school holidays. A more systematic and concerted effort to provide holiday schemes for children with special needs would widen the employment opportunities for their parents.Lesley Pattenson and Steve Bedser 15
  16. 16. Carers and Work – a report for Birmingham City CouncilINTRODUCTION AND BACKGROUNDThe commission briefThis report was commissioned jointly by Birmingham City Council and Birminghamand Solihull Crossroads Care in late 2009. We (Lesley Pattenson and Steve Bedser)were appointed and work started in January 2010. A prime objective of the reportwas to gain „a clear understanding from the carers‟ perspective of what carers needin order to get back to work, highlighting barriers‟. We were also asked to mapservices already in place to help carers; identify support systems that need to be putin place; gather employers‟ perceptions of employing carers and be aware of bestpractice in supporting carers into employment, both locally and nationally.The report also builds upon and significantly expands some of the themes identifiedin the tender documentation; specifically a briefing report prepared for the ServiceDirector for Policy Strategy and Commissioning.In subsequent Steering Group meetings we were asked to concentrate on the carers‟perspective and the breadth of our research changed to accommodate the differentemphasis that Job Centre Plus had placed on carers in December 2009.Pre-existing researchA web search revealed a number of related studies undertaken by the Department ofWork and Pensions (DWP), but there appears to have been little focus by otheragencies on supporting carers or recent carers back to work.The most comprehensive is a detailed qualitative survey undertaken by theUniversity of York for the DWP2. This study covered broadly the same areas as thisstudy, plus retirement plans, but did not explore in as much depth, the sort of supportwhich would help people return to or stay in work. The work was undertaken in 2004and published in 2005, prior to, but perhaps contributing to, the development of theGovernment‟s National Carers‟ Strategy. Their key findings were very consistent withthe ones found in this study. Two other studies also drew very similar conclusions.Summaries of the reports mentioned are reproduced in Appendix 1.The research methodologyThe carers‟ experienceA qualitative research methodology was adopted in which a cohort of carers wasidentified and interviewed in order to identify and explore carers‟ experience in allaspects of their lives which impacted upon their ability to obtain or retain work.2 Report no. 290 “Carers‟ aspirations and decisions around work and retirement”, Hilary Arksey, Peter Kemp,Caroline Glendinning, Inna Kotchetkova and Rosemary Tozer, 2005, ISBN 1 84123 896 1http://research.dwp.gov.uk/asd/asd5/report_abstracts/rr_abstracts/rra_290.aspLesley Pattenson and Steve Bedser 16
  17. 17. Carers and Work – a report for Birmingham City CouncilRecruiting participantsParticipants were recruited through a variety of carer related organisations, servicesor networks. We made direct contact with a number of organisations including carerprojects supported by Birmingham City Council (BCC) and attended a number ofmeetings to present the study, seek support from participants and in some cases,make direct contact with carers. (See details of recruitment process in Appendix 2)While it had been anticipated that some sources would lead to multiple potentialparticipants, who could be brought together in a focus group in a familiar setting, thisdid not materialise. (However, we were present at a meeting organised by ParentsViews Count, at which a break-out group discussed „employment, experience andexpectations‟, from the perspective of the parents/ carers. The bullet points chartedreflect many of the themes explored in more depth within this report, and can befound in Appendix 3.)Effort was therefore concentrated on securing support for individual interviews. Therelatively small numbers coming forward who met the criteria for the study may beindicate that large numbers of carers are not actively interested in returning to work,or it may simply mean that they were not interested in taking part in the study, forwhich no material recompense other than travel expenses was offered.The research focus was always intended to be qualitative, with the intention ofcovering a spread of experience. However there was no attempt at random or othertype of sampling to recruit interviewees, so the spread was achieved by targetingcertain agencies, in particular to fill gaps. The spread across type of carer, workingor not, ethnic and faith background and area of residence is impressive as follows.Characteristics of the cohort of participants27 carers and recent carers were recruited to the study. 10 were working in either fullor part-time posts or in self-employment and the remainder were interested inseeking work. Some had only recently ceased their last job, others had not workedfor over 30 years.Participants were from a wide spread of areas across Birmingham, having postcodesas follows: B3 x2, B8 x2, B10, B12, B13 x2, B16 x2, B17, B18, B19, B20 x2, B21 x2,B24, B26, B27, B31 x2, B32, B72, B74, B75The gender breakdown of 22 women and 5 men reflects the gender imbalanceamongst carers in general so the relative infrequency of male participants was to beexpected.There is a predominance of participants in older age brackets with some coming upto, or past normal retirement age: 30-39 x6, 40-49 x6, 50-59 x10, 60-69 x3, 70-79 x2Targeted approaches through a number of channels failed to recruit a carer in theage range 18-293. (Although this is a deficit in the cohort, it should be noted that3 The study did not attempt to recruit carers still at school since they are accessible and supported throughexisting routes including usual support for further education, training and employmentLesley Pattenson and Steve Bedser 17
  18. 18. Carers and Work – a report for Birmingham City Councilseveral participants had started caring while still at school and their experiences arereflected in the report.) This suggests that younger carers are either accessingtraining and employment support through the many channels that already target thisage range, and/or they are less likely to be connected into the various carer supportnetworks and agencies which led to the recruitment of many of our cohort.Half (13) of the participants had some disability, illness or condition which potentiallyrestricted or impacted the nature of potential work they could undertake. While thisseems high, bear in mind the skew to older age groups.In terms of self-defined ethnicity, nationality and faith group, there was a goodreflection of diversity, with 18 White, 3 African, 3 Asian, I Chinese, 1 Caribbean, 1mixed heritage; 21 being British and the others having nationalities or dualnationalities including four from European countries and one from Hong Kong. Therewere 6 Muslims (2 converts); I Sikh, I Baha‟i, I spiritualist, I non-believer and 17Christians including 12 Church of England, 2 Methodist, 1 Roman Catholic, 1Pentecostal and 1 not stated.Seven of the participants were currently caring for more than one person andvirtually all the interviewees had substantial caring responsibilities in terms of hoursand the level of support needed by the cared for person(s). All but one lived in thesame household as the main cared for person.Of 16 parent-carers, 6 cared for 1 child, 3 cared for 2 children, 3 cared for adultchildren, one cared for child and partner, 2 also cared for an older relative and 1 wasa parent-carer of both an adult and children as well as siblings; 7 cared for partners(2 deceased; one same-sex), 5 for parents (2 deceased). In addition, several parent-carers had also cared for additional relatives in the past, mostly deceased parents.InterviewsAll interviewees selected an alias to protect their identity and signed a consent formfor use of the material. Appendix 4 gives a brief pen portrait of each interviewee.Information was collected using a loosely-structured interview on a one-to-one basiseither in person or over the telephone. All interviews were recorded bar one.The broad areas covered in the interviews included: Personal and family background Details about the cared for, and the caring role and responsibilities of the carer Support services, paid care, Carers‟ Assessments and Direct Payments Work history and aspirations Training, education, voluntary work Steps taken, if any, to progress to paid work or remaining in work Barriers to work, sources of information, aids to starting or remaining in work Financial issues, benefits advice, professional support Informal support networks and sources including family, friends and faith groups Awareness and experience of key sources of support including Carers‟ Centre, Opening Doors for Carers and Job Centre Plus Experience of work, good and bad employment practice or innovative and creative approaches by carers and employersLesley Pattenson and Steve Bedser 18
  19. 19. Carers and Work – a report for Birmingham City CouncilSee Appendix 5 for question prompt maps elaborating potential lines of enquiry. 4Findings and analysisDuring the research process, emerging themes were fed back to a selected group ofusers and stakeholders, who confirmed that our findings reflected the generaldirection of their expectations and experience.The main findings from the research are sequenced in the remainder of the report.Many of the findings and recommendations are drawn from or illustrated by directquotes from interviewees. Implications from the findings are extracted as „pathwaypointers‟ which include a number of more general messages to come out from theresearch. Inevitably, in establishing issues for informal carers, many factors relatingto the statutory or funded care of the cared for person, (or more often, the lack of it),also emerged. Where relevant they are highlighted in this report, as inadequacies informal care are a major barrier to carers being able to undertake a work role.5The first section of the findings relates to the personal characteristics of the carers,their family circumstances and their caring responsibilities, and as such cannot beinfluenced by the pathway. However, such factors may be useful in determiningtypes of carer who should be targeted or prioritised, or who need additional specialistor specific input to complement the general pathway.The second section looks at a range of factors which help or hinder a return to work,including attitudes to caring, motivation for working, financial impact, existing andalternative care arrangements, and formal and informal support for the carers.The third section looks at moving towards work readiness including throughvolunteering, training and education. It identifies the sources of support andinformation on returning to work known to or accessed by the carers and theirexperiences, good and bad, of using them.The fourth section looks at considerations of choice of employment and alternativesto direct employment. This includes the experience of carers in seeking work andthose in, or recently in work, and highlights good and bad practice exhibited byemployers.Employers and employer support agenciesTo complement the direct interviews with carers, a series of meetings was held, inperson and by telephone, with a wide range of agencies concerned with employmentand employment training. In addition, contact was made with employers and otherthird parties with an interest in employment circumstances (e.g. trade unions). Theoutcome of this research is summarised in the final section of the report.4 Not all areas were covered depending on whether relevant to the carer‟s life circumstances.5 In particular, a significant section on Direct Payments is included because they offer huge potential to releasecarers so that they can work.Lesley Pattenson and Steve Bedser 19
  20. 20. Carers and Work – a report for Birmingham City CouncilTHE CARERS‟ RESPONSIBILITIES AND IMPLICATIONS FOR WORKCaring responsibilitiesBy definition, a carer‟s immediate restriction on work is the responsibility of caring foranother person. There are therefore implications for work depending on who thecared for person is, what their needs are and what the demands may be in thefuture.A distinction can be made between those with ongoing indefinite caringresponsibilities e.g. those caring for someone with a chronic but not terminalcondition or an adult child with special needs, those where the role may alter (e.g.parents of children as they get older) and those who will inevitably experience acessation of their caring responsibilities, where the cared-for person is a terminally illpartner, or an elderly parent. (e.g. Following her mother‟s death, one ex-carer wasnow seeking work for the first time in over three decades.) Although potentially withthe highest possibility of returning to paid employment, such carers may be reluctantto plan for life following bereavement and though referred to cautiously by some, itwas not explicitly explored due to the sensitivity of the topic.Some transitions can be accurately anticipated (e.g. child leaving school) andplanned for in terms of the carer returning to work, and others (death) are a littlemore unpredictable in terms of time-scale.Pathway pointer In exploring potential for paid work, there is a need for a range of options and solutions for carers each of whom is individual with a unique set of circumstances, constraints, skills and aspirations and each of whom needs a tailor made support pathway.Parent-carers of children under 18Some conditions are apparent from birth or diagnosed pre-school, others manifest inproblems which may not be diagnosed for years, often leaving parents „in limbo‟, notknowing what is wrong, unable to make plans and possibly unable to access formalsupport.“In the early stages, after my son was diagnosed, I didn‟t know how he was going to be fromone day to the next, so to be able to commit yourself to a job would have been extremelydifficult, it really would. I couldn‟t have contemplated having a job because of not just hiscare needs, but the emotional strain of dealing with it.” LauraPathway pointer It may be unrealistic to expect parent-carers of children to work in the early stages of recognising, understanding and adjusting to caring for a sick or disabled child or one with other special needs, whose priority will be getting the correct services and support in place for their child.Lesley Pattenson and Steve Bedser 20
  21. 21. Carers and Work – a report for Birmingham City CouncilWhile children are at school, there are hours in the day when the carer couldpotentially work, but this is also the only time they may have to themselves, toundertake leisure activities, go to support groups or undertake domesticresponsibilities that they cannot do when their children are back home.“Some carers of older people seem to think that parent-carers aren‟t carers like they are,because you have to care for your children anyway, so [caring for your children] was a bitdevalued. They go to school so your respite is when they are at school, regardless of thefact that you might have to spend the whole night awake with them.” LauraTransition to adulthoodThis transition to adulthood may present new possibilities for their parent(s) to work.When a child leaves school there are various options – going to college, into work,day-care in an adult facility, supported living away from home, a residential setting,or simply staying at home 24/7. Some carers saw the transition following the end ofschooldays as a positive step for the child to develop alternative support andpotentially independent living, giving them the opportunity to return to or extend paidwork, albeit recognising that they would still have to be in a job that allowed them torespond to the needs of their child if needed.Vera has a teenage son with autism whose needs are currently preventing her from working.“I‟m hoping he will go to university, whether he would cope or not, I don‟t know. I hope he willincreasingly become more independent and take it from there. I‟ve got a friend with adaughter at university, she still has to be ready, she can‟t switch off. Again, it limits the kindof job you can do, I definitely can‟t go back to teaching unless it was very few hours.”Other carers saw it as a time of greater dependency as, without school providing abreak, or the prospect of any viable alternative which they could imagine, theypresumed they would become full-time carers for their adult child living at home,indefinitely.Yee doesn‟t know what will happen in three years time when her son, who has learningdisabilities, has to leave school at 19. She thought she might in fact need to be at homeeven more for him.“You can‟t go out at 9a.m. to get to work, you could do a year ago because he was at schoolbut you can‟t now, once you get into the adult system it‟s a nightmare, but hopefully, theseyounger parents won‟t put up with it, because they‟ll be asking for Direct Payments,”MargaretParent-carers of children still in school are a more accessible group than many othercarers, since they can be reached via schools which obviously know which childrenare statemented/have additional support. The Council already provides transitionalsupport using a recently developed „Transition Pathway‟ tool 6 to review options forthe child from around the age of 14, but this focuses on the child‟s needs and doesnot specifically include any consideration of the opportunities presented for the carer.This is a missed opportunity to encourage carers to start planning how to maximisethis potential by for example, starting a two or three year training course at day6Kate Race, Transition Development Co-ordinator, Birmingham City Council – kate.race@birmingham.gov.ukLesley Pattenson and Steve Bedser 21
  22. 22. Carers and Work – a report for Birmingham City Councilclasses, or remote learning opportunities such as the Open University (OU), on-line,part-time or correspondence courses in readiness for future work.However, it must be remembered that the best laid plans are subject to the ongoingand changing needs of the cared for person.Mary‟s son started at a specialist education college “I assumed I would have more time tocomplete my studies, get a placement and accreditation and a part-time job, butunfortunately it doesn‟t seem to be working out at college either.”When Ellie‟s son left school he went to college for 2 years but it was way beyond him and hehad six months off during this period due to illness when she had to care for him 24/7.Pathway pointer Childhood transition support services need to be linked into the carers‟ pathway, and include specific identification of carer aspirations and sign-posting onto support to help them explore opportunities to return to or extend work if desired.Parent-carers of adult childrenUnless the adult child has a terminal condition, this is often a static situation, withanticipated years of caring ahead and no foreseeable change in caringresponsibilities.Ellie, 52, has a 27 year old son with severe learning difficulties, She cannot see any changesin the care or support her son will need in the foreseeable future and as her husband has nointention of retiring, her commitments to her son, which are her priority, are likely to continuefor many years to come, potentially way past her own retirement age. She hasn‟t worked orhad any training in 30 years yet would love to work. The only solution she can see is toaccess training to develop computer skills e.g. in web design or desk-top publishing, whichshe could use to work from home.Louise cares for her daughter who she hopes will go to a college for people with specialneeds when she is 16 in 2 years time, but beyond that Louise is uncertain what the futurewill hold and anticipates that she is likely to remain living at home.Louise also supports her elderly mother who lives locally and whom she sees most days,helping her with hospital visits and general support. As an only child any future additionalsupport her mother needs will fall to Louise to provide. Her husband is due to retire in 5years time and could offer more support but by then Louise will be in her mid-50s. She wouldnevertheless love to do some part-time work.Pathway pointer If a carer aspires to return to paid work, opportunities and support needs to be designed round the limitations and demands of this ongoing caring role or reducing the need for the carer to provide support. (See formal and alternative care arrangements).Lesley Pattenson and Steve Bedser 22
  23. 23. Carers and Work – a report for Birmingham City CouncilCarers of partnersMost of the partners cared for had a condition with an onset later in life so the carerhad already had considerable work experience, which they could then adapt. Asthey had become the sole breadwinner, most of these in the cohort had found waysto maintain the family income while also providing significant care for their partner.Pathway pointer Such carers may be reasonably well qualified and experienced plus be highly motivated to maintain work and so a relatively small input of support may generate a high proportion of positive outcomes.Carers of parents or other older relativeSome carers had picked up the care of their parent, aunt, or grandparent as therigours of age had affected them, but notably, several had also had lifelong caringresponsibilities where a parent had had mental health problems.Maxine‟s mother had paranoid schizophrenia since before Maxine was born; Maxine caredfor her mother (and younger siblings) from the age of 9, 40 years in all until her death a fewmonths ago. For the past 20 years Maxine has been the sole carer, looking after her motherevery day as well as looking after her own family. Her mother developed early dementia,then had a stroke 6 years ago and needed 24 hour care so she moved into Maxine‟s home.Maxine could not consider work before her mother died because she was caring full-timefrom 6 – 2a.m. daily. “It would have been impossible but now I really want to do something.”Planning for and following death of cared for personThis is a very sensitive subject, which both the cared for and carer may be veryreluctant to talk about, being particularly careful not to let the cared for person knowthey are taking steps to prepare for life after their death7. The national organisation„Caring with confidence‟ runs programmes for carers in Birmingham8. Although itincludes sessions on how caring fits with other aspects of life, and on maximisingincome, this does not appear to go as far as how to seek paid work. Furthermore,the course includes an optional extension to the programme with an additional fivesessions for carers of people nearing end of life‟ but doesn‟t appear to specificallylook at support and planning for carers to flag up the possibility of looking at trainingor other development activities in preparation for return to work.Pathway pointers An opportunity for planning for life after the cared for‟s death should be available if requested, but perhaps not promoted too actively except in the context of an in- depth personal review where appropriate sensitivity and support can be applied. Omega, who developed „Caring with confidence‟ and have the expertise in delivering successful training courses for carers, could be encouraged to develop an optional programme extension for carers wanting to return to paid work.7 Conversation with provider of the courses8, Omega, the National Association for End of Life Care, 0800 849 2349Lesley Pattenson and Steve Bedser 23
  24. 24. Carers and Work – a report for Birmingham City Council“Now, my mum‟s died, they‟ve offered me to go to CRUSE, but I don‟t need that, I go to seemy mum at the cemetery twice a week, but I would like to work. I know some people leave ita year or two after someone‟s died, but I want to get back, I want to do something. “I was onCarer‟s Allowance and I expected it to stop after my mum died, but they sent me a letter tosay that I could have the Carer‟s Allowance for two months; that they didn‟t expect you to goand look for a job straight away, but no-one‟s been in touch to say, „Your mum‟s died now,would you like some sort of help?‟ I‟m not on any benefits now, and I‟m just forgotten about.There must be quite a few people like that, when the caring comes to an end, we don‟t reallyget support, whereas if you‟ve been signing on for 12 months they say, „Would you like to goon this training course?‟ and encourage you.” MaxinePathway pointer After the death of a known for cared person, a referral to Opening Doors or to another co-ordinating group could be generated (in conjunction with the DWP) which could check whether the ex-carer needed any help, and sensitively offer to signpost to financial review, counselling or support, training, work review etc. This offer should be wider than just a pathway to work, but could link to the Job Centre Plus as a conduit, regardless of whether the person was signing on as unemployed or seeking benefits.Multiple caring rolesThe opportunities are even more limited for carers whose caring responsibilities arefor several people, particularly where they are of different generations.Mary cared for her late mother since her schooldays, has looked after several terminally illsiblings and three children with special needs, the youngest of whom are now approachingadulthood. She has nevertheless been studying hard in order to fulfil her aspiration of paidemployment in a few years. “I‟ve had a very long term plan for some time really, my life, mymovement in life has been very much determined by caring responsibilities, and I‟m notcomplaining but it sometimes alarms me. It‟s always overshadowed by having very loftyresponsibilities at home and that‟s what dictates my moving into work”.Lesley Pattenson and Steve Bedser 24
  25. 25. Carers and Work – a report for Birmingham City CouncilDIVERSITY AND PERSONAL CHARACTERISTICS OF THE CARERAND THE IMPLICATIONS FOR WORKGenderThe participants interviewed were predominantly women, reflecting the genderbalance of carers in the community. The men were mostly caring for a partner orparent. Being the main carer of a child remained women‟s role in the cohort.Yee thinks that her husband would approve of her trying to get paid work so long as she wasavailable to take care of her son; they see her primary role as that of mother and carer.Asked whether her husband would be supportive if she said she wanted to prioritise goingback into paid work Shazia said: “He‟s not really interested so long as his dinner is on thetable when he comes home from work.” So long as she fulfils her responsibilities as wife,mother and carer, although he wouldn‟t be particularly supportive he wouldn‟t block it either.This was quite a common response; so long as it didn‟t affect their lives, men werereported as not caring whether their wives worked or not. Equally they may notunderstand the barriers and reasons why their partners are not making progressobtaining work.“My husband has a male outlook on things – he can‟t understand why I just don‟t get on withit, he doesn‟t appreciate all the stress surrounding it, he thinks a good idea if I just got onwith it”. VeraPathway pointer Female carers in common with non-carers need the support of their family if they want to go out to work. Additional support in securing this may be helpful.Partnership statusQuite a lot of the interviewees who had partners stayed at home as full-time carers.The need to maintain the role of bread-winner mitigates against partners being ableto share care or even to offer crisis care in an emergency, which in turn impacts onthe work prospects of the primary carer. (By definition, those caring for a partner didnot have the option of their assistance).Christine‟s eldest son had a combination of communication and behavioural problems froman early age. His nursery frequently called her to fetch him early. “Me and my husband tookit in turns to go and fetch him. We were both called into the office by our companies, and told„you‟re going to have to do something about this‟. In the end, because he was the mainbread winner, we took the decision that I had to give up my job.”My husband is in a position to continue working full-time for the foreseeable future andwishes to do so. He‟s supportive in emotional terms but can‟t help in practice in the event ofa crisis with our son during the day as he is at work.” EllieLesley Pattenson and Steve Bedser 25
  26. 26. Carers and Work – a report for Birmingham City CouncilPathway pointer Families are likely to prioritise safeguarding the employment of the higher earner, often resulting in the primary caring role falling to the woman even where there are good intentions of shared caring.Many carers reported that their partners were supportive in emotional terms, andsome also played a practical role in caring as well.“My husband used to look after my mum a lot as well, he was excellent, he‟d finish work, orbecause he‟s got his own business, sometimes he‟d not go in till 12, he‟s quite flexible, so helooked after her.” MaxineHowever, some partners were reported as playing no role at all in caring for theirchild although they were financially supporting their partner so they could be theprimary carer.Lone parents/ carersIn contrast, there were a number of single female carers who were surviving onbenefits sometimes topped up with very low paid part-time work. Many of these weresingle parents of young or adult children with special needs. The lack of support athome was a significant constraint on their ability to work. This also applied to singlepeople caring for parents.Pathway pointers Carers with supportive partners who were able to share some of the caring role could be more likely to be able realistically to seek or sustain work. Where there is a partner supporting the family the financial imperative to work was often secondary to the carer‟s desire to „get out of the house‟ and do something other than be a carer. Single people put a higher emphasis on the need for money. (See also motivation to work) Some „back to work‟ programmes are targeted at single parents. The pathway needs to identify which carers also fit this category as it may open up additional or alternative support opportunities for them.Relationship breakdownThe strains of caring for someone within the family can also place immense andsometimes irretrievable pressures on relationships. Several carers reportedtemporary or permanent breakups because of it.To try to juggle both caring and working, Christine‟s husband “Also changed his job to try toaccommodate our life, but we were like ships in the night, when I came home he‟d go towork, so we were never able to sit and talk through our problems, or have a nice timetogether. Our oldest was very very demanding. The combination of anxieties about my sonalong with the problems at work all got so stressful at home that my husband and Iseparated for a while.” They later sorted out their problems and had their second child (whoalso turned out to have special needs).Lesley Pattenson and Steve Bedser 26
  27. 27. Carers and Work – a report for Birmingham City CouncilPathway pointer Employability will not be enhanced by avoidable strains on relationships, so the pathway needs to help people look at the whole situation including work-life balance, additional support available, and the knock-on effect of training or working on the whole family.Residency in relation to the cared-for personVirtually all the carers interviewed lived in the same household as the person theywere caring for; one that didn‟t recognise that a change in living arrangements mightsoon be needed. This could suggest that there is a greater limitation on work for co-residents than those living independently from the cared for person, since only onehas appeared in the cohort.AgeThe age of the carer was not necessarily an indicator of the person they were caringfor or of their desire to return to or remain in paid work. Several older carers currentlyworking expressed a need to remain in work as long as possible for financialreasons. However, where carers were not in work but were nearing the end of whatis usually considered to be „working age‟ then realistically their chances of returningto work may be lower than those of younger carers. Conversely, carers who havebeen caring since their schooldays may have accrued little work experience andneed additional support to get them onto the pathway to work.Sharina, 36, cares for her son with ASD (Autism Spectrum Disorder) and her visuallyimpaired aunt. She has been caring continuously since the age of 9, when her father diedand she took on the main responsibility for looking after her older severely handicappedbrother. She missed a lot of school and was frequently investigated by truancy officers eventhough they knew the situation at home. She was offered absolutely no help as a youngcarer by the school or social services. Her education suffered badly as a result.Pathway pointers The pathway may need to help older carers look for self-generating schemes of paid income, identify employers sympathetic to older employees and promote non-paying alternatives providing stimulating and rewarding activities outside the home and caring role. The pathway may need to consider the pros and cons of supporting younger carers inexperienced in working but with many potential years ahead of wage earning, against resources invested in getting older carers who may be better qualified and skilled to get back to work for a shorter period.Disability (of carer)Although not a quantitative survey, it was noticeable that half the carers in the cohortreported disabling conditions themselves ranging through bad backs, depression,asthma, arthritis, diabetes, autism, to complications following surgery. Some of theseconditions in themselves presented limitations to seeking or maintainingemployment.Lesley Pattenson and Steve Bedser 27
  28. 28. Carers and Work – a report for Birmingham City CouncilSeveral of the carers approached during the recruitment process who werediscounted because they did not meet the criteria of seeking work, said that this wasbecause they were disabled themselves.Pathway pointer Some „back to work‟ programmes are targeted at disabled people. The pathway needs to identify which carers also fit this category as it may open up additional or alternative support opportunities for them.Sexual orientationOne participant was openly gay; sexual identity was not explicitly asked for but mostof the rest of the cohort were in or had had heterosexual relationships.Alastair cares for his male partner. Since he worked for an agency providing services to gaymen, his sexual orientation was not an issue for him in his workplace. “It‟s totally unique, I‟mvery privileged, I don‟t know what it would be like if I was in a public sector or blue chiporganisation whether there would be potential discrimination, it might not be an issue at allbut it‟s something I‟ve not even had to think about here.”However, the majority of gay, lesbian or bisexual (LGB) carers seeking or working inother work environments, who are not already out, potentially face having to „out‟themselves by explaining the nature and significance of their relationship to thecared for person, in order to also explain the implications of their caring role on theirwork, and this creates a situation of „double jeopardy‟.Pathway pointer Additional support, guidance, advocacy or referrals may be needed for lesbian and gay carers in this situation, as well as, where available, access to other LGB carers. 9Ethnicity and country of originAs well as white, black, Asian and mixed heritage British participants the cohortincluded people from European, Irish, African, and Chinese ethnic groups who hadmoved to the UK. Other than any pre-existing barriers or restrictions experienced bysome ethnic groups seeking work in common with non-carers, ethnicity did not seemto impact other than through its associations with culture or language.Two carers were identified through direct approaches to cultural supportorganisations (Chinese and Somali). Three more relatively recent migrants emergedthrough the wider recruitment processes. Three of the five carers concerned hadarrived in this country with the special care and support needs of the cared forperson already diagnosed.9 This work should therefore be considered in conjunction with the contemporaneous study of lesbian, gay,bisexual and transgendered carers by the LGBT Consortium for Birmingham City Council, completion expectedsummer 2010.Lesley Pattenson and Steve Bedser 28
  29. 29. Carers and Work – a report for Birmingham City CouncilA unifying feature of this group was very inadequate information about basic servicesand support for the cared for person, themselves as carers or indeed any othersupport they could access e.g. for their other children. Several had floundered sincearrival and although all had had limited contact with statutory services they appearedto have been very poorly served.Amie arrived in Birmingham in 2004 from Africa via another European Union country with her6 year old son with behavioural problems. She said that when she first came to England shedidn‟t realise she could get childcare (but her English [as her third language] was very poor)and contextually she most likely meant child benefit. Many of the things she said in herinterview reflected that she was relatively new to the country and had not yet recognised orfound her way around all the different systems and services.Anna, whose husband had a stroke two days before the birth of their first child, said “Whenthe visa came up, we had a legal representative who did the paperwork and fought for us, Iwouldn‟t have known how to deal with it, but that was via friends, not via services. The goodthing was that before his stroke, my husband was working with the Pensions Service andafterwards his line manager contacted me and told me about child benefits and child taxcredits because I didn‟t have a clue.”Pathway pointers In establishing an effective pathway, close links need to be developed with immigration, asylum seeker, refugee, cultural and new communities support services and groups, to ensure that there are links to general carer support organisations and specifically into the carers and work pathway.10 It should not be assumed that people, particularly those who are new to this country, understand about different agencies and extra help may be needed to clarify the different organisations involved. (This is good practice regardless of language or length of residence.)LanguageProblems in accessing support and information are obviously exacerbated whereEnglish is not well spoken or understood.Both the Chinese and Somali interviews were conducted through interpretersbecause these carers were not yet competent in English. The latter was working in ajob which required little communication. There are obvious limitations on the scopeof work available which is conducted in languages other than English, particularly inthe smaller minority groups, and may be exacerbated by an absence of a culturallybased commercial infrastructure and a cultural lack of acceptance of carers‟ needs.Because of her lack of English language Yee agreed that work would have to be with theChinese community and that she would look for jobs in China town, with Chinesebusinesses, or supermarkets. However, in a catch 22 situation she feels that the Chineseculture doesn‟t yet appreciate or recognise the needs of carers. So, while she feels she islimited to Chinese businesses because of the language, she also believes that Chinese10 If the pathway is set up correctly, it should in turn signpost sideways when other information and support needscome to light.Lesley Pattenson and Steve Bedser 29
  30. 30. Carers and Work – a report for Birmingham City Councilbusinesses would not employ her because she is a carer and could not understand oraccept that she has to put the needs of her son as her first priority.Pathway pointers When English is not the first or even second language, service providers need to be very careful that information provided has been clearly understood, and if necessary provide extra help or advocacy to support them in accessing it. Direction to appropriate language support or ESOL classes (English for Speakers of Other Languages) will be an important part of the pathway for people whose first language is not English. In turn, providers of ESOL and related courses need to understand the limitations on carers in terms of timing, availability, absenteeism and cancellation at short notice etc. Alternative means of delivering language support such as befrienders and communication practice volunteers who can work with carers at home, on line or on the phone may need to be explored. Other carers might themselves be able to be matched up to fulfil these roles.Faith and cultureSome cultures are perceived as being more supportive and understanding of issuesof disability and caring than others and their attitudes towards working women vary.Mahmood, a British born Asian, has provided emotional support to his mother who has longhad mental health problems but since she has had a stroke he has to do absolutelyeverything for her. Although originally living in a large extended family all siblings, nieces andnephews have left and take no interest in him and his mother. Mahmood felt that there wasa cultural expectation by Social Services staff that Asian families stuck together and did notunderstand that the rest of the family were not involved in caring decisions or support.Pathway pointer Stereotyping might lead to people making assumptions about alternative or additional care available to (in particular) Asian carers seeking work and should be avoided by ascertaining each individual situation.It seems that there is very limited information available to carers from the Chinesecommunity, due to limitations of the Chinese Carers‟ group support role and becauseof the language barrier in accessing other sources of support and information.Pathway pointer Because of the relatively self-contained sector, there might be potential to do an innovative piece of work with the Chinese business community in conjunction with the Chinese Community Centre and the Council funded Carers Support scheme based there, to try to improve understanding and create some work placements or opportunities for carers.The potential support available through faith and cultural networks was explored inthe interviews; see faith and cultural groups.Lesley Pattenson and Steve Bedser 30

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