Chapter 6: Carers
The position of carers under the Equality Act
250.While the Equality Act provides rights to individuals, in reality the relationships that people have with one another can be as important—few more so than when we provide care for, or receive care from, a loved one. Carers UK estimate that there are 6.5 million people providing unpaid care for an ill, older or disabled family member, friend or partner.383 They predict that by 2037 this number will rise to 9 million and that 3 in 5 people will be carers at some point in their lives. Carers may also be disabled people: an NHS Information Centre Survey found that 27% of carers were in receipt of Disability Living Allowance as a result of their own disability or ill health.384
251. Unpaid and family caring can have an impact on the ability of people to work: Over two million such carers work full-time and one million part-time. Part-time working is much more common amongst carers than non-carers, but carers are also more likely to stop working altogether as they “struggle to switch to part-time hours.”385 Carers with disabilities are even more likely to give up work to care.386 In this report we use the term ‘carer’ to refer to those who provide unpaid care to a family member, friend or partner.
Discrimination and Carers
252.Carers UK told us that in a survey of carers, 8% of those who gave up work did so “because of difficulties or disputes with their employer.”387 Their research also showed “that 14% of carers had been the victim of harassment as a result of disability or caring and a further 11% had been denied services because of disability or caring responsibilities.”388 The Challenging Behaviour Foundation told us that they had “many instances of carers experiencing direct discrimination and harassment.”389 One example provided in their evidence was of the mother of ‘C’, a young person with a severe learning disability. She had told them that:
“If I had a pound for every time I heard someone say, ‘if he were my son I would give him a good spanking’ or, ‘if he were mine I wouldn’t take him out in public’, I would be a rich woman. Not one day has gone by when I have taken C out that I do not hear at least one derogatory, hurtful remark about my beautiful son.”390
253.It can often be difficult to distinguish between the effect on a disabled person and the effect on their carer. Emily Holzhausen of Carers UK gave the example of a carer talking about the private rented sector: “She has a child with special needs, and was asked several times whether he was destructive or would burn the house down. That is clearly discrimination by association, but it is also directly discriminating against her child”.391
254.A further dimension to the complexity of the experience of carers is that many carers are themselves disabled. Jeanine Blamires, who cares for her disabled daughter and, as a disabled person, is in turn cared for by her husband, and at times her daughter, explained that:
“I cannot put my role as carer separate from disabled person … I need to be looked at as mum and listened to as mum, but I also need to be listened to as that knackered woman who at times can barely move or talk. … I am this one person who has got all these bits and pieces; see me as the whole and try and make it work, please.”392
255.Emily Holzhausen felt that such problems arose because services “do not see the disability behind the person who is a carer, just as they do not often see the carer behind the disabled person.” She told us that the assessment processes of some local authorities did not “understand that you can have a disability and still be a carer.”393 This was starkly demonstrated when Jeanine Blamires told us how reference to her disability was removed from her daughter’s social care records, with the result that she was faced with trying to “access a service as a disabled person who is recorded as able bodied”.394 At its worst this had “affected getting adapted housing even though officially we were for years at the top of our local housing list. It also affected the help for us to care for our eldest as carers with disabilities and has been incredibly isolating and distressing.”395
Protection under the Equality Act 2010
256.Carers UK were concerned that “the relationship between carers and the Equality Act 2010 in terms of their rights is not a straightforward and obvious one.”396 This is true, and is made more so by the complexity of the caring relationships, and the ways in which a carer can be impacted by the difficulties facing the disabled people for whom they care.
Discrimination by association
257. The only provisions that directly protect carers, as carers, are those on direct discrimination and harassment. This is often termed ‘discrimination by association’ and was made explicit in the Equality Act following the successful challenge to a requirement in the DDA that the claimant themselves be a disabled person.397
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Sharon Coleman’s son was born with a rare condition affecting his breathing and also has a hearing impairment. Ms Coleman brought a case claiming she was forced to resign from her job as a legal secretary after being harassed by her employers and being refused flexible working which other employees without disabled children were granted. She argued that she had been targeted because she had a child with a disability. The case was brought under the DDA, which required that discrimination be on the grounds of the claimant’s disability. Ms Coleman argued successfully that EU Law (which prohibits disability discrimination in employment) required protection for those discriminated against because of their association with a disabled person. |
258.This change was welcomed by a number of witnesses,398 but concerns remained about how well and widely the existence of such protection was known.399 When we asked Jeanine Blamires’ husband, David, about the provision he told us that:
“This is literally the first time I have heard of this, and I have been caring for either my wife or daughter for 21 years. I accept the Act only came in five years ago, but this is a revelation.”400
259.Mr Blamires knew enough about the Act, and his and his family’s rights under it, to come and give this Committee valuable evidence. That he did not know about associative discrimination tells us that more needs to be done to enable carers to access their rights.
The duty to make reasonable adjustments
260.One limitation on the concept of discrimination by association is that, as the law currently stands, it applies only to direct discrimination and harassment. The Disability Law Service explained that “Carers cannot use the [Equality Act] to request reasonable adjustments … because the wording of s 20 excludes discrimination by association”.401 Carers UK called for the extension of the duty to make reasonable adjustments to carers, framed in the same terms as the duty when applied to disabled people, so that “whether the adjustment is reasonable is weighted against whether it imposes disproportionate costs to an employer or disadvantage to other groups.”402
261.In 2014 the Court of Appeal in Hainsworth v Ministry of Defence403 considered the extent of the duty to make reasonable adjustments. The claimant wanted to be transferred from Germany to England as a reasonable adjustment, so that her disabled daughter’s special needs could be accommodated, arguing that the duty to make reasonable adjustments applied in respect of those who were associated with a disabled person. The Court of Appeal decided that it did not. On 1 December 2015 the Supreme Court refused an application for leave to appeal and refused to make a reference to the Court of Justice of the European Union.404
Carers and indirect discrimination
262.Carers UK have called for protection against indirect discrimination to be extended to cover carers, the lack of which “means, for example, that if a carer is forced to leave their job because the employer operates a shift pattern which they cannot comply with because they need to provide care at a certain time of the day … and no allowance is made of those needs, then they have no recourse to the law.”405
263.This is also an area that has received judicial attention, albeit not in the context of disability. In Chez Razpredelenie Bulgaria AD v Komisia Za Zashtita Ot Diskriminatsia406 the owner of a grocery shop in Bulgaria brought a claim of discrimination against an electricity supplier, because it placed its electricity meters above head height in an area populated largely by people of Roma origin. This prevented the claimant from reading the meter and was because the electricity supplier believed that those of Roma origin were more likely to tamper with or vandalise the meters. Though the claimant was not herself Roma, she was able to claim discrimination because she lived in the area and suffered the same detriment as the Roma residents. That decision was made under the Race Equality Directive407, and it remains to be seen if the same reasoning would be applied in respect of other protected characteristics.
The rights of carers outside the Equality Act
264.Protection under the Equality Act is, rightly, important for carers. There are however other sources of protection that may provide redress without the need for further legislation.
Flexible working in employment
Box 7: What is the right to request flexible working?
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Under provisions set out in the Employment Rights Act 1996 and regulations made under it, all employees have a statutory right to ask their employer for a change to their contractual terms and conditions of employment to work flexibly, provided they have worked for their employer for 26 weeks continuously at the date the application is made. An employee can only make one statutory request in any 12 month period. Before June 2014 the right only applied to the parents of children under 17, or 18 in the case of parents of disabled children, or to those caring for an adult. Now any eligible employee can apply to work flexibly for any reason. |
Source: ACAS, The right to request flexible working: an Acas guide, 2014
265.Carers UK acknowledged that “a carer’s likely reasonable adjustments are more likely to be in keeping with flexibilities needed by parents of children under 18, rather than disabled people”408. Emily Holzhausen felt that “the right to request flexible working … has loosened up a few attitudes to different work patterns”.409 There were, nevertheless, “some more entrenched issues. For example, people think flexible work patterns is working different shifts, but for some families having set shifts—because you are a carer, because the person who comes in and supports your family in the meantime only comes in at a particular time—is what you need.”410
266.The Disability Law Service were concerned that the right to flexible working was “centred on the employer’s interests, rather than the disabled person’s interests.”411 However, good practice does exist: Business Disability Forum Partner Barclays Bank described this in its approach to inclusive workplaces: “You always are anticipating need, regardless of what type of need we are talking about, and that is whether it is a physical disability, an unseen disability, childcare requirements, caregiver requirements, mental health and wellness or just wellbeing in the workplace.”412
Existing rights to support: the Care Act
267.Not mentioned by witnesses were the further rights that unpaid and family carers have under the Care Act 2014. This is not surprising given that they only came into force in April 2015. Briefing material produced by Carers UK, and published on their website, explains that the Act put carers “on a similar footing to people with care and support needs in terms of rights to assessment and support.”413 Research with 18 local authorities explored the opportunities that this presented, which included “higher awareness and a culture of recognition and support”,414 improvements to carer’s needs assessments, and more meaningful interactions with carers. One authority also saw an opportunity to integrate support for families better, developing “family based approaches”.415 This latter opportunity would be of particular benefit to families such as the Blamires, who rely on a “caring circle”416.
268.If the existing statutory provisions relating to carers were better implemented and more widely known there would be no need to legislate for further protection. Discrimination by association, if better understood, provides important protections for carers from direct discrimination and harassment. The right to request flexible working has the potential to deliver the type of workplace adjustments needed by carers. The Care Act, once properly bedded in, has the means to support those with multifaceted identities—be that parent, grandparent, friend, carer, child, disabled person or any combination of these.
269.The Equality and Human Rights Commission should work with carers’ organisations to produce and disseminate guidance on the rights of carers under the Equality Act 2010.
270.The Government Equalities Office, the Office for Disability Issues, the Department for Business, Innovation and Skills and the EHRC should undertake joint work to encourage employers to respond positively to flexible working requests from carers of disabled people.
383 Carers UK, ‘Facts About carers 2015’ (October 2015) p 1: https://www.carersuk.org/images/Facts_about_Carers_2015.pdf [accessed on 2 March 2016]
384 NHS Information Centre for Health and Social Care, Survey of Carers in Households 2009/10 (December 2010) p 8: http://www.hscic.gov.uk/catalogue/PUB02200/surv-care-hous-eng-2009–2010-rep1.pdf [accessed on 2 March 2016]
385 Carers UK, ‘Facts About carers 2015’ (October 2015) p 10: https://www.carersuk.org/images/Facts_about_Carers_2015.pdf [accessed on 2 March 2016]
386 Carers UK, ‘Facts about carers 2015’ (October 2015) p 5 https://www.carersuk.org/images/Facts_about_Carers_2015.pdf [accessed on 2 March 2016]
390 Ibid.
395 Ibid.
397 Coleman v Attridge Law (A Firm) (C-303/06) [2008] All E.R. (EC) 1105.
398 Written evidence from Action on Hearing Loss (EQD0128), TUC (EQD0055) and Inclusion London (EQD0075)
403 Hainsworth v Ministry of Defence (2014) EWCA Civ 763
404 Hainsworth v Ministry of Defence (2014) UKSC 2014/0164
406 Chez Razpredelenie Bulgaria AD v Komisia Za Zashtita Ot Diskriminatsia (2015) Case C-83/14 IRLR 746
407 Council Directive 2000/43/EC of 29 June 2000 implementing the principle of equal treatment between persons irrespective of racial or ethnic origin.
410 Ibid.
413 Carers UK, Care Act 2014 and Carers: Opportunities for Change (March 2015) p 1 http://www.carersuk.org/search/care-act-2014-and-carers-opportunities-for-change [accessed on 7 March 2016)
414 Ibid.
415 Ibid.