Short breaks for family carers – when enough is enough
by stevebroach
I was always a big fan of Mencap’s Breaking Point campaign, but it was always appalling that it was needed. How as a society do we let families caring for disabled children and adults reach the point where they can no longer carry on? It shames us all that just last year 8 in 10 families caring for a loved one with a learning disability could describe themselves as at breaking point.
It is not surprising that the law requires the state to support family carers such that this breaking point is never reached – indeed, it would be a scandal if it didn’t. So, in answer to the question from @BendyGirl on Twitter this evening, here are some of the legal duties families can use to get short breaks and any other essential support they need in their caring roles.
- The social care duties. I’ve already blogged about how section 2 of the Chronically Sick and Disabled Persons Act 1970 requires services to be provided to disabled children and adults where this is necessary to meet the person’s needs. It will obviously necessary for a service like a short break to be provided where otherwise the person’s family may fall apart – indeed the threshold for ‘necessary’ is set much lower, when all the equality and human rights considerations (see below) are properly taken into account. Short breaks can (and where necessary must) be provided under section 2(1)(a) at home (‘practical assistance in the home’) or section 2(1)(c) in the community (recreational facilities outside the home).
- The duties to disabled children. All disabled children are ‘in need’ for the purposes of section 17 of the Children Act 1989, and section 17(3) allows a service to be provided to any family member of a child in need, ‘if it is provided with a view to safeguarding or promoting the child’s welfare’. So there need be no argument about who the short break is for – the answer is that it is for every member of the family. A lawful short break provides a positive experience for the disabled child while allowing the family members to have some time off caring. There is also a duty to treat disabled children’s best interest as a ‘primary consideration’ in decisions made about them – this means their best interests should be considered first and can only be overriden if all other factors outweigh them. This duty stems from section 11 of the Children Act 1989 read with Article 3 of the UN Convention on the Rights of the Child and is brilliantly explained by Lady Hale in the leading case of ZH (Tanzania). It is obviously relevant both to the question of whether a disabled child gets a short break at all and to the nature and level of the short break service to be provided.
- Human rights obligations. Article 8 of the European Convention on Human Rights protects the right to respect for family life. As well as prohibiting negative ‘interferences’ by the state Article 8 ECHR can impose positive obligations to provide support to enable family life to continue – see Anufrijeva v Southwark at para 43. In McDonald v UK the European Court of Human Rights held that disputes about the level of care provided to a disabled person fell within the scope of Article 8 ECHR – see paras 46 to 47 (the court did not have to consider the question of positive obligations because in that case care was being taken away, see paras 48-49). The duties on the state under Article 8 ECHR are informed by the positive obligations under the other international human rights treaties, most importantly the UN Convention on the Rights of Persons with Disabilities (see Article 19(b) on community support) and the UN Convention on the Rights of the Child (see Article 23 re ‘special care’ for disabled children). There is growing acceptance by the English courts that these treaties create rights through Article 8 ECHR. In my view it is highly likely that a Local Authority which lets a family reach breaking point is acting in breach of the human rights of all the members of that family. We need to take more cases to prove this.
- The public sector equality duty. Under section 149 of the Equality Act 2010, public authorities must have regard to a series of specified needs, including the need to advance equality of opportunity to disabled people, when carrying out their functions. Families generally get to have a break from each other – so Local Authorities must give careful consideration to the need to give families with disabled child or adult members the same opportunities, both when planning and commissioning services and when making decisions in individual cases. The public sector equality duty may be particularly important in challenging decisions to cut funding for short break services.
The rights of carers to services will be strengthened when the Care Act 2015 comes into force next April – I’ll blog about this nearer the time. However I hope this shows that we don’t need to wait that long to establish an enforceable right for families to get the short breaks they need to survive and thrive.
On the question of thriving, not just surviving – there are very important regulations governing short breaks for disabled children which I don’t think get enough attention. The Breaks for Carers of Disabled Children Regulations 2011 are made under paragraph 6(1)(c) of Schedule 2 to the Children Act 1989 (stick with me, I promise it’s worth it). This paragraph of Schedule 2 imposes a duty on Local Authorities to provide services designed to assist family carers of disabled children ‘to continue to [provide care], or to do so more effectively, by giving them breaks from caring’. So we know from the duty in the Children Act 1989 itself that to comply with the law Local Authorities must not offer only ‘crisis’ breaks but also family support to allow ‘effective’ caring to continue.
The regulations then flesh out this duty in at least two important ways. Firstly, regulation 3(b) requires Local Authorities to have regard to the needs of family carers ‘who would be able to provide care for their disabled child more effectively if breaks from caring were given to them to allow them to (i) undertake education, training or any regular leisure activity, (ii) meet the needs of other children in the family more effectively, or (iii) carry out day to day tasks which they must perform in order to run their household’. So these are the goals to which Local Authorities should be directing their provision of short breaks, again both in terms of planning and commissioning and in making decisions on individual cases.
Secondly, regulation 4(1) states that ‘a local authority must provide, so far as is reasonably practicable, a range of services which is sufficient to assist carers to continue to provide care or to do so more effectively’. These services must include a range of daytime care, overnight care and leisure activities (regulation 4(2)). This is a ‘sufficiency duty’ which is a fashionable approach to social welfare law – Parliament imposes a duty on public bodies to secure what that body considers to be a sufficient supply of an important service, rather than dictating the precise level of service required.
How does all this help families? Firstly, it means that every Local Authority must have a range of short break services in its area – which must be set out in its short break services statement (regulation 5). Secondly, these services must not just be ‘crisis’ services but services designed to help families live (in short) ordinary lives. Thirdly, a range of different types of short break services must be available in every local area. Fourthly, and perhaps most importantly, the services available must be ‘sufficient’ (so far as reasonably practical). So every Local Authority has to make a rational and well-informed decision about what level of investment it is ‘sufficient’ for it to make in its short break services – and a failure to make such a decision, or an irrational decision which does not take the level of need properly into account, could be challenged by way of judicial review.
I hope the time will come when we will finally say enough is enough and ensure that every family member who cares for a disabled person is properly supported in their caring role. The law I summarise above is piecemeal and patchy, but it should already be sufficient to make sure this happens in every case. Where it doesn’t, I suggest families get legal advice. We cannot continue to let this be yet another area where legal rights and everyday reality are so far apart.
And if your LA tells you that you are not entitled to a short break because your child gets DLA and thats what you should spend it on? (True story!)
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Then I would strongly suggest you get advice from one of the specialist solicitors on my previous post
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Thank you!
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Could the public sector equality duty be used as a reason to NOT provide care? I have 4 year old twins who are both completely quadriplegic and have unstable medical conditions making meal and bath times particularly problematic. The social worker acknowledges the difficulties around meal and bath times, but says that she would expect and young family with twins to face difficulties at these times and so to provide assistance would not be providing equality but advancement over families who’s children do not have disabilities. Can the legislation be used in this way?
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Hello Paul – can’t comment on individual cases, but as a general point – the Equality Act 2010 does not prohibit (and in fact may require) positive treatment to correct discrimination that disabled people have experienced. In particular, section 149(6) Equality Act 2010 (within the public sector equality duty) specifies that compliance with that duty ‘may involve treating some persons more favourably than others’ so long as this does not give rise to unlawful discrimination.
It is absurd to suggest that disabled children of any age with complex needs must be treated the same as non-disabled children because that is what equality requires. Thankfully the law moved on from this kind of reductive approach to equality a long time ago. In the human rights context, it is now recognised that the non-discrimination provisions in Article 14 of the European Convention on Human Rights may require particular groups to be treated differently to meet their particular needs – this is the Thlimmenos principle which has been adopted by our courts, for instance in Burnip , an important discrimination case about housing benefit.
So I would strongly suggest you speak to a specialist solicitor to get advice on your case. The real issue in any case is whether the law requires the additional needs of disabled children to be met – and very often the answer is yes.
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Your blogs are a mine of useful information, thank you.
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Very kind – makes it worthwhile writing all these words to hear that!
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Oh I need a break – but not from caring for my daughter – from the hassle of the care staff we get for night time! 😉 last week all I needed was a long long sleep – I have never been so tired in all my life. Oh for the pre tracheostomy days when no night staff were needed!
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[…] legal rights and families’ realities which we all need to work together to bridge. As with short breaks, there should be a far clearer legal right to childcare for disabled children – but we can […]
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[…] Paragraph 6(1)(c) of Schedule 2 to the Children Act 1989, which (read with the Breaks for Carers of Disabled Children Regulations 2011) requires local authorities to secure a sufficient level of short break care for families with disabled children. I have written previously about the duties to provide short breaks to disabled children. […]
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[…] Hampshire is currently consulting on the future of its short breaks service (until 12 December). The consultation web page states that the council are looking to cut ‘between £2.5m and £3.5m’ from its budget for disabled children’s services (presumably for 2015-16, although this is not stated). Of this, £1.85m of the savings are proposed ‘by making changes to how open access short breaks services are currently provided’. Again, this is despite the range of duties on local authorities to provide short breaks. […]
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[…] have been significant reductions in expenditure on short breaks services and in 2013, Mencap reported that eight out of 10 families had reached breaking point due to a lack […]
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Its even worse when your disabled child becomes a disabled young adult and you are told that he is too old for the children’s hospice but adult hospices do not offer respite meaning that my disabled self and my husband are to be left caring for a severely disabled and ventilator dependent 29 year old son 24/7 365 days a year without a break as there is no where eexcept an old folk’s home for him to go to!
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Thank you for the excellent article on short breaks. Do these rights extend to the choice to use direct payments for short breaks instead of commissioned services? I feel this choice is especially important for children who don’t like groups and have a preference to be abled within mainstream community. Could there be an argument against commissioned short break services exclusively for disabled children encouraging exclusion, especially were there is a culture of promoting short break activity over choice and control using direct payments?
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I today have been told my respite package will be pulled because my daughter has high verbal ability!!
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I have just been told by my disabled children team worker that staff have been told to leave H1 of EHCPs (s.2 CSDPA) blank and put all provision under H2 (s.17).
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Terrible Joolz. Hard to see how things will ever change when the law is treated with contempt like this. Hope families affected challenge – remedy will be judicial review and legal aid will be available
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Legal aid for child or will family income affect eligibility? Have just found a useful letter on this from DFE (Sept 14) that might be good starting point. Will complain to DFE too.
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Should be possible to get legal aid in the child’s name based on the child’s income
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Althoughe get some respite care in the day and overnight the Social Worker tells me this doesn’t come under the Short Break Provision so I asked what my son gets under that and was told that the hospice provide it. Pointed out the hospice doesn’t come under the local authority and she said as they provide respite all the council have to do is ensure he has something and that as they hospice provide it that’s sufficient. He only gets 12 nights a year. I’m trying to get what they provide increased and am struggling. They want me to justify why family don’t do more. Well becuase they have their own lives for one, plus the council haven’t adapted the house and they can’t lift my son. So frustrated and confused!
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Sounds like you need a solicitor to advise you Lucy. Some who might be able to help you here https://rightsinreality.wordpress.com/2014/09/13/solicitors-with-expertise-in-disability-and-sen-cases/
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Hi all ,here is a link to Erwin Mitchel and lower on the page is many template letters over the cuts http://www.irwinmitchell.com/personal/protecting-your-rights/social-healthcare-law
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[…] duties to disabled children and human rights obligations (this blog post explains it properly https://rightsinreality.wordpress.com/2014/09/15/short-breaks-for-family-carers-when-enough-is-enoug…), as parents of Rufus, the law requires the state to support […]
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I have been reading this again tonight as it feels very relevent to us at the moment and the treacle I am wading through. That is what life feels like in our house at the moment and I am drowing in it, The LA have pushed us to the edge this time, preyed on us when we were at our most vunerable than come back and turned it on us once again when as a family we were at our most vunerable. They have out of the blue pulled our short breaks support, it wasen’t alot to start with but to us it was the tiny thing they gave us and our beautiful daughter Amber some normality amongst the chaos world of SEN, school, thearpies, numrous hospitals cams the list is endless. Following complaing to them the responses I recieved were actally worse than the letter stating they were cutting our support. I posted on here really just to say thanks to Steve for giving me the cofidence to fight back, to seek help and not be afriad of the law. im not afriad of challenging the LA by any means I do it alot but legal stuff?? waen’t really something I felt that comforable with it seemed remote, hard to understand and something I felt totally unsure about. But thanks to Steves advice we now have a solcitor and are begining to get the support we clearly need as a family to sort this one out as it was clearly one fight we weren’t going to win on our own.
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My LA have stated that short breaks for a disabled child do not meet safeguarding criteria.
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Strongly suggest you speak to a solicitor – see here https://rightsinreality.wordpress.com/2014/09/13/solicitors-with-expertise-in-disability-and-sen-cases/
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[…] Short breaks for disabled children under regulation 4 of the Breaks for Carers of Disabled Children Regulations 2011 […]
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[…] Short breaks – regulation 4 of the Breaks for Carers of Disabled Children Regulations 2011 requires local authorities to provide ‘so far as is reasonably practicable, a range of services which is sufficient to assist carers to continue to provide care or to do so more effectively.’ This is a key duty in relation to the provision of short breaks. […]
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[…] Short breaks – regulation 4 of the Breaks for Carers of Disabled Children Regulations 2011 requires local authorities to provide ‘so far as is reasonably practicable, a range of services which is sufficient to assist carers to continue to provide care or to do so more effectively.’ This is a key duty in relation to the provision of short breaks. […]
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