Thoughts on the crossroads of law, politics and society – for when a tweet isn't enough. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Short breaks for family carers – when enough is enough

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.

  1. 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).
  2. 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.
  3. 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.
  4. 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.

#LBBill – more ways to improve the Mental Capacity Act

After my last post about how #LBBill could improve the Mental Capacity Act (MCA), Lucy Series (who tweets @thesmallplaces and has a fantastic blog on mental capacity issues) got in touch with some excellent further ideas about mental capacity law reform. Lucy has kindly given me permission to post these ideas here. Lucy’s ideas and my initial responses are below – all comments welcome.

Lucy writes:

I’ve read Mark’s recent post (Bill, Bill and Bill) and also Steve’s post (#LBBill – Making the Mental Capacity Act work for disabled people and families). I think the proposals are really exciting and really interesting and have a few comments to make.  

On revising section 4 MCA (the ‘best interests checklist’) to place a greater emphasis on the person’s own wishes, there are quite a few tools you could use to argue for this. There is a growing consensus amongst academic and practising lawyers that the ‘best interests’ test does not comply with Article 12(4) of the UN CRPD which says that measures relating to the exercise of legal capacity must respect the ‘rights, will and preferences’ of the person. I’ve recently participated in a series of ’roundtable meetings’ at the Ministry of Justice which reached this conclusion, although the government’s own view is yet to be announced.  

If you were looking for a ‘template’ of a version of the ‘best interests’ test that places a much greater emphasis on the person’s own wishes, I’d suggest looking at section 8 of the new Assisted Decision-Making (Capacity) Bill from Ireland. I’ve outlined in this blog post why I think it’s more powerful than the MCA in preventing actions that conflict with what the person wants.

I agree with Steve that duties under the MCA to consult with P’s family are not strong enough (and neither is the duty to involve the person themselves vigorously enough enforced). But I don’t think it goes far enough to just address section 4 (‘best interests’). This section only kicks in at the point a person is labelled ‘incapable’.  But what about involving families before that point? For example, Connor’s lack of ‘capacity’ was used to exclude his family, Mark was booted out of Steven’s capacity assessments. You need something that gives the person the right to say “this is my family, I need them to help me make decisions” and gives the family the right to say “I am an essential support to this person, you can’t shut me out”.  

There are a number of legal systems around the world which allow somebody like Steven or Connor to nominate a person whom they trust as their ‘supporter’.  A supporter would have a clear legal right to help the person make decisions, so it would be extremely hard for public bodies to sideline supporters or withhold information from then.  In some of these laws, supporters can also ‘represent’ a person who has serious difficulties making decisions or communicating. In some ways it’s a bit like deputyship but their ‘powers’ to represent the person are much more limited (you couldn’t, for example, sell a person’s house as a supporter), they are chosen by the person (even if the person don’t have capacity to make a Lasting Power of Attorney) and they also have to represent an outcome based on what the person wants (so long as it’s ‘reasonable’).  If you want examples of those, Canada is the front runner. Australia and Ireland are about to introduce similar provisions, to comply with the CRPD. The time is ripe for the UK to lobby for something like this; another issue agreed at the roundtable meetings at the Ministry of Justice was that the MCA’s support provisions are far too weak.

Steve mentioned advocacy in his post.  I agree that advocacy is absolutely vital, both for families and people with disabilities. However, I think IMCA advocacy [note from Steve – IMCAs are the MCA advocates] is much, much, much weaker than the new Care Act advocates.  I am very worried that we are now going to have a two-tier system, where people who ‘lack capacity’ get IMCAs – who will have less time to spend with them and much weaker duties to challenge decisions – and people with capacity will get Care Act advocates.  Personally, I’d repeal the IMCA provisions and adopt the Care Act advocates for all the circumstances where IMCAs are currently used.  I’d also make it much, much, clearer that where a person is deprived of their liberty and they are objecting, the IMCA must initiate an appeal on behalf of the person.  It shouldn’t be left up to families to rock the boat on their behalf (although if the person isn’t objecting, and the family are, then obviously IMCAs should be available to help them).

To summarise Lucy’s excellent ideas above and my immediate thoughts:

  • Strengthening the respect given to the disabled person’s wishes and feelings – we definitely need to draw on the Irish Bill and this will inform our drafting for this vital clause in #LBBill
  • The idea of ‘supporters’ seems to me to be an excellent one and something which doesn’t change a fundamental feature of the MCA (and so is suitable for our Bill). My view is we should include this concept in #LBBill – I would really welcome people’s views about this. It seems to me to be an excellent approach generally but specifically in relation to the situation we are concerned with, when there is a dispute as to whether a disabled person should live in an institutional setting or in the community.
  • Advocacy – completely agree with Lucy about this. Why should the right to advocacy be less when a person lacks capacity to make a key decision than if they have that capacity? It seems to me hard to argue against Care Act Advocates replacing the IMCA role – we can include this in #LBBill unless anyone can raise an objection. I also like the idea very much of requiring advocates to challenge any deprivation of liberty where P expresses contrary wishes and feelings.

So that’s two new ideas for how #LBBill can improve the MCA – creating a right for P to appoint a ‘supporter’ and improving the right to advocacy. Anyone for any more?



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