Childcare for disabled children – reasonable adjustments and the right to ordinary lives

Childcare is a part of ordinary family lives. In the modern economy, parents need and are expected to work to support their families – or in the language of Every Child Matters and section 10 of the Children Act 2004, to make sure their children ‘achieve economic well-being’. There is also copious evidence of the benefits of high quality childcare to children’s social development and learning.

So childcare matters – and as the Equality and Human Rights Commission say (see link above) access to childcare is an issue of equality – both disability equality and gender equality given the uneven distribution of caring responsibilities between women and men. It is therefore profoundly depressing if entirely unsurprising that the recent Parliamentary Inquiry into childcare for disabled children found that so many families with disabled children were simply unable to access any childcare – never mind high quality childcare that would meet their child’s needs and promote their development. The statistics cited in the inquiry report (see p11) speak for themselves. Families with disabled children are 2.5 times more likely to have no parent working for more than 16 hours per week. Only 16% of mothers with disabled children work compared to 61% of all mothers. Over four in ten disabled children are not accessing the free early years childcare to which they are entitled.

This extract from the co-chairs’ foreword sums up the problem:

The Inquiry heard from parent carers and young
people that the current picture is troubling. All
families face childcare challenges, but these
problems increase dramatically for disabled
children and young people. Whilst there are
numerous examples of good practice and
inclusive provision, many parent carers described
being subtly discouraged or simply turned away
by a provider. Some parent carers were offered
fewer than the 15 hours of early education
they are entitled to. Parents who wish to work
succeeded in arranging suitable care often
only after an exhausting battle. Parents can be,
and responses to the Inquiry indicate often
are, charged higher fees than for non-disabled
children, but may receive no extra help when this
happens.

So what does the law have to say about this? Given childcare is an equality issue, the first legal port of call must be the Equality Act 2010. Firstly, the public sector equality duty in section 149 of the Equality Act 2010 requires public bodies to have ‘due regard’ to a number of specified needs in carrying out all their functions. Most relevant here is the need identified in section 149(1)(b) to ‘advance equality of opportunity’ for disabled children in relation to their peers. So Local Authorities must carry out all their childcare functions with that need firmly in mind.

What about the fact that families are ‘subtly discouraged or simply turned away’ by childcare providers? Can they do this? Well in short, no. A childcare provider which simply refuses to take a disabled child on grounds of disability is in breach of the prohibition on direct discrimination under Equality Act 2010 section 13 – and direct discrimination cannot be justified.

What about the more subtle forms of discrimination, where a provider claims it doesn’t have the skills or resources to meet a disabled child’s needs, or pleads “‘elf and safety” concerns? This is where the duty to make reasonable adjustments can be a very powerful legal tool. The reasonable adjustments duty is one of the things which makes equality legislation a game-changer – because it is about not just tackling prejudice and overt discrimination but making the world a better place for disabled people. The duty is in section 20 of the Equality Act 2010, and it requires ‘reasonable steps’ to be taken to remove a number of barriers that disabled people face:

• Where a policy (described as a ‘provision, criterion or practice’) puts disabled people at a substantial disadvantage compared with non-disabled people, the duty is to take reasonable steps to avoid the disadvantage.
• Where a physical feature puts disabled people at a substantial disadvantage compared with non-disabled people, the duty is to take reasonable steps to avoid the disadvantage.
• Where a disabled person needs an ‘auxiliary aid’ to avoid being at a substantial disadvantage compared with non-disabled people, the duty is to take reasonable steps to provide the auxiliary aid.

It is obvious how policies or physical features of the premises of childcare providers might need to change to improve access for disabled children. But what about the duty to take reasonable steps to provide ‘auxiliary aids’? The guidance from the Equality and Human Rights Commission states that this involves ‘providing extra aids and services such as providing extra equipment or providing a different, or additional, service‘ (emphasis added). So in the childcare context providers have to provide any additional service that it is reasonable to expect them to provide for a disabled child in order to comply with their reasonable adjustments duty.

What about cost? It is central to the reasonable adjustment duty that bodies subject to it (here, childcare providers) only have to do what is reasonable. What it is reasonable for a large chain of commercial nurseries to do to improve access for disabled children may well be very different to what it reasonable for a small community nursery in a village hall to do. The cost of the aid, adaptation or additional service is relevant to whether it is ‘reasonable’ to provide it. However – if it is ‘reasonable’ for a provider to make an adjustment then section 20(7) of the Equality Act 2010 imposes a specific ban on transferring the cost of compliance with the duty to the disabled person (or here, their parent). So any additional service provided under the reasonable adjustments duty to a disabled child must be provided free of charge. I simply do not understand in this context how parents of disabled children can routinely be charged higher fees for childcare than parents of non-disabled children, as the Parliamentary Inquiry found.

The Equality Act 2010 doesn’t have to do all the heavy lifting here on its own. The provision of childcare is now largely governed by the Childcare Act 2006, which has a number of helpful things to say relevant to childcare for disabled children:

• Section 1 requires Local Authorities to improve well-being and reduce inequalities between young children in their area – so work done on planning and commissioning childcare must all be aimed at these goals.
• Section 3 requires Local Authorities to promote childcare to parents who may otherwise not access it – which will clearly include parents of disabled children.
• Section 6 imposes a duty on Local Authorities to secure sufficient childcare in their area for parents who wish to work or study in relation to work – so far as is ‘reasonably practicable’, i.e. to the extent that each Local Authority can afford. Importantly, section 6(2) states that in deciding whether childcare is sufficient Local Authorities must have regard to the needs of parents for ‘the provision of childcare which is suitable for disabled children’. To comply with this childcare sufficiency duty, a Local Authority must therefore know how many disabled children in its area may need childcare, the current level of accessible childcare provision and whether this level of provision is sufficient for the identified needs. Yet the Parliamentary Inquiry stated that only 28% of local authorities report having sufficient childcare for disabled children – meaning nearly three-quarters self-reported as being potentially in breach of their statutory duty, depending on whether they had done all that was reasonably practicable to remedy this. I’d suggest parent carer forums and other local groups may want to ask their Local Authority to explain how they have complied with this centrally important duty.
• Section 8 gives Local Authorities a power to assist any person who provides childcare, including by providing financial assistance. So an adjustment needed by a particular childcare provider to allow a disabled child to access its services goes beyond what is reasonable, then section 8 will allow the Local Authority to meet some or all of the cost.

Finally, no discussion about the care of disabled children is complete without reference to section 2 of the Chronically Sick and Disabled Persons Act 1970. As explained in this previous post, section 2 of the 1970 Act imposes a duty on Local Authorities to provide a wide range of additional services to disabled children where the service is ‘necessary’ to meet the child’s needs. A Local Authority is entitled to take account of its resources when deciding whether it is ‘necessary’ to provide a service to meet a child’s needs – but once it is accepted that the service is necessary then it must be provided no matter what the cost.

Section 2(1)(c) of the 1970 Act requires Local Authorities to provide ‘recreational facilities outside [a disabled child’s] home or assistance to [a disabled child] in taking advantage of educational facilities available to him’. Section 2(1)(a) requires Local Authorities to provide ‘practical assistance for [a disabled child] in his home’. It is therefore plain that additional support with childcare could fall within the duty to provide services to disabled children imposed by section 2 of the 1970 Act – subject to assessment in every case of whether the service is ‘necessary’ to meet the child’s needs. These duties will be supplemented by the new duties to parent carers under the Care Act 2014 – in force from April 2015 and which I will blog about nearer the time.

Finally, information about accessible childcare is centrally important given its scarcity. I have written previously about the Local Offer under the Children and Families Act 2014. Schedule 2 to the SEN and Disability Regulations 2014 sets out the required contents of every Local Offer. Paragraph 15(c) of the Schedule mandates that the Local Offer must include ‘sources of information, advice and support…about childcare for children with special educational needs or a disability’. So parents should no longer have to struggle to find information about accessible childcare in their area – if the Local Offer published by their Local Authority is lawful.

There is lots more that could be said about the law on access to childcare, not least about the duty on the state to promote the right to work for parents with disabled children. However I hope this brief survey shows that in this area, as in far too many others, there is a huge gap between 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 piece together this right from the existing law and we need to make it a reality, if necessary through legal challenges in the courts. While claims of discrimination by childcare providers will be heard in the county court, systemic challenges to Local Authority failings can be brought by judicial review – for which legal aid may well be available. If you think you have such a challenge consult a specialist solicitor as soon as possible.

Comments or questions on the law in relation to disabled children’s access to childcare most welcome below.

Easier read – #LBBill – more ways to make the Mental Capacity Act work better

This is the easier read version of the #LBBill post with Lucy Series’ ideas on how to make the Mental Capacity Act work better. Thanks as always to Anne Collis at Barod for these words. Check out the new #LBBill blog for more about our ideas to change the law.

Lucy Series has a blog. She tweets as @thesmallplaces. She knows a lot about mental capacity law – the law about how disabled people make decisions.

Here are Lucy’s ideas about how we can make that law work better for disabled people and their families.

The Mental Capacity Act has rules to work out what is in someone’s “best interests”. The rules may not fit with the United Nations rules about disabled people.

Ireland has got better rules for working out what is in someone’s “best interests”.

Families must have a say. They must have a say in working out if someone can make their own choice. They must have a say if someone cannot make their own choice.

Someone like Connor should be allowed to choose a supporter to help them make decisions. Canada has good rules about this. We need a rule like this in the UK too.

Everyone needs a good advocate. The rules about advocates in the Care Act are good. They are better than the rules about advocates for people who cannot make their own choices under the Mental Capacity Act.

Everyone should have the same rights to advocates. We also need a new rule so the advocate must appeal to the court if the person does not like what is happening to them.

This is what I think about Lucy’s ideas.

1. Let’s put some of the rules from Ireland in #LBBill
2. Supporters is a really good idea. I think we need to put this in #LBBill. What do you think?
3. I agree with Lucy about advocates. Let’s put this in #LBBill too.

I have told you what Lucy thinks. I have told you what I think.

What do you think? Please tell us. And does anyone have any more ideas?

#JusticeforLB

#Justiceforallthedudes

School transport – no right to education if you can’t get there

This post was edited on 12 March 2015, including to clarify the definition of an ‘eligible’ child and the requirements of a post 16 transport policy statement. Links to the legislation have also been added.

School transport in general and transport for children with SEN in particular forms a massive part of Local Authority expenditure. I know of at least one Local Authority where expenditure on SEN transport exceeds the amount spent on SEN provision – by some way. So at this time of austerity it is unsurprising that Local Authorities are eyeing up their school transport budgets and seeking to bring them down. Unfortunately, too often this is being done without any proper understanding of the relevant statutory duties – the subject of this blog.

Compliance with the law on school transport is not helped by it being so blinking complicated. I have totted up at least four statutory provisions which might be relevant to the question of whether a child or young person receives help from their Local Authority to get to school. Each of these form part of the alphabet soup of sections found after section 508 of the Education Act 1996 – a soup created through lots of later amendments to that Act. The key statutory provisions (all in Part IX, Chapter II) follow. Although legislation.gov.uk has not yet updated all these sections of the 1996 Act, you can see the amended sections through the Act that introduced them, the Education and Inspections Act 2006 and the Apprenticeships, Skills, Children and Learning Act 2009.

1. Section 508B – this requires Local Authorities to secure ‘suitable home to school travel arrangements’ for ‘eligible’ children of compulsory school age (5-15, ie not 16 and 17 year olds – see 3. below). Importantly these arrangements must be provided free of charge – see sub-section (1). Any arrangements must be ‘suitable’, i.e. appropriate for the individual child taking account of any particular needs they have. Schedule 35B to the 1996 Act sets out who ‘eligible’ children are – importantly, paragraph 2 of this Schedule says that disabled children and children with SEN of compulsory school age who live within the walking distance (two or three miles depending on age) but ‘cannot reasonably be expected to walk to school’ are all ‘eligible’. Paragraph 3 makes children ‘eligible’ if they attend a school outside the walking distance, so long as it is the nearest suitable school. So in most cases (unless, for example, the parents have chosen to send their child to a school which is not the nearest suitable school) disabled children and children with SEN will have a right to free suitable school transport up to the age of 16 unless they can reasonably be expected to walk to a school close to home themselves. There is helpful statutory guidance on the school transport duties to ‘eligible’ children.
2. What about children aged 5-15 who are not ‘eligible’? The Local Authority has a power to provide school transport for any child under section 508C (scroll down the link) of the 1996 Act. The Local Authority must at least think about exercising this power in every case and must exercise it in some cases – otherwise it is fettering its discretion. However, by virtue of it being a power it will be much harder to force a Local Authority to make transport arrangements under section 508C. Moreover unlike transport provided to ‘eligible’ children arrangements made under section 508C do not have to be made free of charge. Section 508C could also be used to obtain transport for children below compulsory school age, i.e. the under 5s, where this transport is necessary for them to access education.
3. What about children aged 16 and 17? It seems to me there is a gap in the law here which is potentially discriminatory. 16 and (shortly) 17 year olds are now expected (indeed obliged) to participate in education or training. However the duty to provide school transport under section 508B applies only to children of ‘compulsory school age’. The definition of this term is found in section 8 of the 1996 Act – and it clearly says that this term covers only children aged 5-15. Children aged 16 and 17 are covered by section 509AA of the 1996 Act (warning – section not fully up to date with later amendments). This requires every Local Authority to publish a transport policy statement for ‘persons of sixth form age’. Importantly, this statement has to include ‘arrangements for facilitating the attendance [at schools or colleges] of disabled persons and persons with learning difficulties or disabilities’, see section 509AB (warning – section not fully up to date with later amendments). However, section 509AA does not itself create a duty or power to provide transport – it therefore seems to me that the statement it requires is dealing with circumstances when the Local Authority should exercise its section 509C powers in relation to these older children. In setting this policy, the Local Authority will need to have due regard to the need to advance equality of opportunity for disabled learners – as required by section 149 of the Equality Act 2010, the public sector equality duty (see further below). However this is not as good as being covered by the section 508B duty – not least because, as we have seen, ‘eligible’ children under that duty are entitled to suitable transport free of charge. The statutory guidance on post 16 transport is very helpful on the need for the transport policy statement to deal properly with the particular transport requirements of disabled learners.
4. What about young adults, who are now within the remit of the SEN system by virtue of the reforms under Part 3 of the Children and Families Act 2014 (particularly those who have or will have EHC Plans)? Their transport needs should be met under section 508F of the 1996 Act, which requires Local Authorities to make ‘such arrangements for the provision of transport as they consider necessary’ for adult learners. So if it is ‘necessary’ for a young person over 18 to receive help with transport to get to school or college, then there is a duty on the Local Authority to provide this. Further, assistance under section 508F must also be provided free of charge – see sub-section (4).

So it is clear that the nature and extent of the duty to provide school transport depends not only on the child or young person’s needs but also on their age. As set out above, I’m troubled by this, particularly what seems to me to the less favourable treatment of young people aged 16-17, not just compared with younger children but also compared with those over 18. However in general it should be possible to use these provisions to obtain suitable transport for any child or young person who has a genuine need for help to get to school. Any transport policy being operated by a Local Authority which makes this impossible will be highly likely to be unlawful.

It is also important to remember that there can be a social care duty to arrange transport which helps a disabled child or young person access education. Unsurprisingly, this duty is found in section 2 of the Chronically Sick and Disabled Persons Act 1970 – see further on the CSDPA here. In particular, section 2(1)(c) requires Local Authorities to provide ‘assistance to [a disabled person] in taking advantage of educational facilities available to him’. This duty arises where it is ‘necessary’ for a Local Authority to provide a service under the CSDPA to meet a person’s needs. As such, there will be no CSDPA duty if in fact the disabled child or adult is able to obtain transport to access education under the Education Act 1996 duties and powers described above. However if there is a gap in the 1996 Act scheme and a need for transport to education cannot or will not be met under that legislation, then the CSDPA duty operates as a safety net. From 1 April 2015 however the CSDPA is repealed in relation to those over 18 and entitlement to transport will then be an issue of eligibility under the Care Act 2014.

How about the case, common at present, where Local Authorities are attempting to tighten their eligibility criteria for school transport as part of the cuts? Obviously any new policy has to comply with the law above, but what about other relevant legal considerations? Firstly, it is virtually certain that any Local Authority attempting to change its transport policy will have to consult in advance with affected families, and do so properly – see the guidance from the Supreme Court on consultation. Secondly, all cuts decisions must be taken in accordance with the public sector equality duty in section 149 of the Equality Act 2010, which requires ‘due regard’ to be given to a series of specified needs. The most relevant need in such a case is likely to be the need to ‘advance equality of opportunity’ for disabled people compared with others (see section 149(1)(b)). It is still possible for a Local Authority to pay ‘due regard’ to this need while cutting an important service, but it must first have understood how many disabled people will be affected, analysed what the impact will be and considered any ways in which the impact could be mitigated or avoided (all of this comes from the extensive case law on the section 149 duty). This places a heavy burden on Local Authorities who are seeking to cut services which are valued by disabled people, and one which is all too often not properly discharged.

Families who are concerned about current transport policies or proposed cuts to services which may be unlawful should seek advice from a specialist solicitor as soon as possible.

Comments on this tricky legal area most welcome below.

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?

#JusticeforLB

#Justiceforallthedudes

Solicitors with expertise in disability and SEN cases

Updated 29 June 2022

I am often asked to recommend solicitors for SEN and disability cases. The following is a list of solicitors’ firms with whom I’ve worked and who I know have good expertise in SEN and disability issues. Most of these firms offer legal aid and will be able to advise disabled people and families about eligibility for public funding. Most can help with judicial review cases and most advise and represent people in the First-tier Tribunal and Upper Tribunal (education appeals) and the Court of Protection (Mental Capacity Act cases). However not every firm does every type of case. If in doubt, check the website or call the new enquiries number for the firm to ask.

I have also added some firms at the end who do not offer legal aid but can be instructed privately by those who are able to pay. I understand that this will not be relevant to most disabled people or families but provide information about these firms to set out the widest possible range of options. Individuals who are not eligible for legal aid can also consider applying to the Rook Irwin Sweeney Social Justice Fund.

I am not formally recommending these firms – because I can’t, I only know their work from my perspective as a barrister at the other end of the telescope from the client. The best recommendations will come from disabled people and families who have used solicitors as clients – so ask around if you are in need of legal advice.

Some of these firms have offices around the country, others have just one office. Where the firm has a particular regional focus I have noted this. However geographical location isn’t as important as the right expertise, particularly as so much work is done online these days. You should be able to find out about each firm from their website, including any restrictions on the areas they serve.

Importantly, to access legal aid for SENDIST appeals you will need to go through the telephone gateway – 0345 345 4345. NB – only ‘legal help’ is funded for SENDIST (not representation) and the legal aid assessment is based on parental means. It is possible to make an application for ‘exceptional funding’ so that legal aid covers representation at SENDIST – you would need to discuss this with a specialist solicitor.

If a firm isn’t on this list, it may be that I simply haven’t had the chance to work with them yet. Please post any recommendations for further firms in the comments section below.

As well as specialist solicitors, advice is available from organisations such as IPSEA and SOS!SEN, from the Contact helpline and from impairment-specific organisations like the National Autistic Society. Families across the country can also access advice and support from their local Independent Advice and Support Service (IASS) (link is to a very helpful map on the Council for Disabled Children website which has contact details for the IASS in every council). However it is important to keep in mind that for cases which need to go to the High Court via an application for judicial review a legal aid solicitor will be required, unless private funding is available or the claimant(s) are able to crowdfunding, for example by using CrowdJustice.

Final point – the list is in alphabetical order to avoid any accusations of favouritism by the firms I work with!

Legal aid solicitors with expertise in SEN and disability cases

• Bindmans – http://www.bindmans.com/. On Twitter @BindmansLLP
• Clarke Willmott – http://www.clarkewillmott.com/. On Twitter @CWCoP
• Coram Children’s Legal Centre (issues relating to children and young people re SEN and care leavers ) – http://www.childrenslegalcentre.com/. On Twitter @CCLCUK
• Deighton Pierce Glynn – http://www.dpglaw.co.uk/. On Twitter @dpg_law
• Disability Law Service – http://www.dls.org.uk/. On  Twitter @DLS_Law.
• Irwin Mitchell – http://www.irwinmitchell.com/personal/protecting-your-rights. On Twitter @IMPublicLaw
• Just for Kids Law (London – issues relating to children and care leavers only) – http://www.justforkidslaw.org/. On Twitter @Justforkidslaw
• Lawstop – https://www.lawstop.co.uk/. On Twitter @LawstopUK
• Leigh Day – http://www.leighday.co.uk/. On Twitter @LeighDay_Law
• Mackintosh Law (issues relating to mental capacity and community care) – http://macklaw.co.uk/. On Twitter @macklawlondon.
• SCOMO – http://www.scomo.com/. On Twitter @ScottMoncrieff
• Simpson Millar – https://www.simpsonmillar.co.uk on Twitter @Simpson_millar

Firms without legal aid contracts

• Boyes Turner – www.boyesturner.com. On Twitter @bt_sen1
• HCB Solicitors (Ed Duff) – www.hcbgroup.com. On Twitter @SEN_advice (Ed’s personal account)
• Martin Searle – www.ms-solicitors.co.uk. On Twitter @ms_solicitors
• Rook Irwin Sweeney – https://rookirwinsweeney.co.uk/. On Twitter @ris_law
• Sen Legal – www.senlegal.co.uk. On Twitter @SENLegalltd

Why parents can make decisions for young people under the SEND reforms

Continuing the theme of ‘things that are really legally complicated under the SEND reform programme’, it’s high time I wrote about the interesting and in my view controversial provisions governing decision-making for young people aged 16-25

Quick recap on the general rule. The Mental Capacity Act 2005 applies to everyone aged 16 and over – with very limited exceptions in relation to 16- and 17-year-olds (no Lasting Powers of Attorney, no advance decisions to refuse treatment being the two key differences pre-18). So in general, once a young person turns 16 they are presumed to be able to make their own decisions. If this isn’t the case, then the presumption needs to be rebutted in relation to each decision they have to take. The MCA Code of Practice has a good chapter (Chapter 12) on how this works for 16- and 17-year-olds.

This can come as quite a shock to parents of disabled children, who will routinely take decisions on their behalf where the child cannot decide for themselves until their 16th birthday – when there is of course no magical change in the child’s abilities or needs. Sadly, the MCA 2005 is too often misused by public officials to exclude families from decision making once young people fall under its remit – something we want to change in #LBBill.

Perhaps with this problem in mind, the legal scheme under the Children and Families Act 2014 (CFA) modifies the approach to decision-making for young people under this Act. Section 80 of the CFA allows for regulations to be made which allow statutory provisions to be modified where a young person (or indeed a parent) lacks capacity to make relevant decisions. The regulations which do this are in Part 6 of the SEN and Disability Regulations 2014.

Regulation 64 requires that where a young person lacks capacity to make a decision under Part 3 of the CFA (i.e. a decision in relation to their education or a related health or care decision) then the right to make that decision rests with an ‘alternative person’, either alone or jointly with the young person. The phrase ‘alternative person’ is then defined as meaning either a formal representative under the MCA (Deputy or Attorney) or, if none exists, the young person’s parent.

It is extremely rare for disabled young people to have a formal MCA representative, and where they do it will often be their parent. This means that in the vast majority of cases the new scheme will allow parents of disabled young people to continue to take decisions about their education, health and care up to the age of 25.

I have mixed feelings about this. On the one hand, it is plainly positive that public bodies will not be able to simply cut families out of the decision making process for disabled young people. But on the other, I can’t see any principled reason why this approach should apply only to decisions made under the CFA. Not only does this potentially undermine the autonomy of young disabled adults, it also seems to me to be discriminatory – what about health and care decisions for young people which are not made under the CFA, i.e. for young people who do not meet the threshold for an EHC Plan?

Annex 1 of the new SEN Code of Practice gives brief guidance on how mental capacity issues are to be dealt with in the new scheme. The annex makes the position clear; ‘In the case of a young person [who lacks capacity to make a decision] who does not have [an MCA] representative, the decision will be taken by the young person’s parent’. Importantly, the Annex does go on to emphasise that ‘However, it is important that people are helped to make decisions themselves wherever possible’ – a key principle under the MCA.

Thoughts on these important provisions both in principle and practice most welcome below.

Why campaigning charities need legal teams

I’m a lawyer who used to be a charity campaigner. One reason I became a lawyer is because as a campaigner I was worried I was banging on about the law without having the first idea what I was talking about. Since I’ve become a lawyer I’ve confirmed I was right to be worried about this. This post is a rallying call to try to persuade more campaigning charities to invest in their own legal teams to cure the legal deficit I see far too often within campaigning.

I’m not talking about lawyers who specialise in ‘charity law’ – i.e. the law governing the operation of charities. I’m talking about ‘public lawyers’ – people who understand the law governing the relationship between the state and society, which is what most charity campaigns are about. Charity lawyers of the kind I’m discussing can either work solely on legal campaigning issues or (more typically) be part of an advice and casework team with campaigning as only one part of their workload.

Here are three ways having a legal team can help campaigning charities:

1. Create smarter campaigning ‘asks’. A little part of me dies every time I see a charity campaigning report which highlights an important issue but has hopeless recommendations for legal ‘cures’. Even worse is when a report comes out which completely misses existing legal duties – when the problem actually isn’t the absence of law, it’s that the law is being ignored. Lawyers can make sure that your campaign materials are legally watertight.
2. Make your Bill work credible. I was and remain astounded that most charities who lobby to amend legislation in Parliament do so without proper legal advice on their amendments. In my experience many (most) amendments to Bills are drafted by people who don’t have any legal qualification or experience. Rather frighteningly, some of them even become law (I plead guilty). If you have a lawyer in your campaigns team you can make sure your Bill amendments are legally sound, which makes them more likely both to be accepted and then to work if they become law.
3. Intervene in cases – or bring them yourself. In our legal system, case law matters. There are now a large number of charities who have legal units who get involved in casework – Mind is a great example. Bringing a judicial review claim as a charity or intervening in an existing case can be the most effective way to achieve a campaigning objective. Lawyers can help you work out if this is right in relation to the particular issue you are campaigning on and can then actually do it for you if so.

Campaigning is still a relatively new aspect of mainstream charity work – and still a controversial one (see the notorious recent ‘knitting’ remarks of the new voluntary sector Minister). When I joined the National Autistic Society in 2001 I was the first member of staff with either ‘policy’ or ‘campaigns’ in their job title. Given it is a new discipline there is room for charity campaigning to evolve – and in my view it needs to evolve a more informed legal aspect, fast.

Why do charities need their own legal staff – can’t they just get legal expertise from external lawyers? Well, yes – to an extent. There are numerous solicitors and barristers who provide pro bono (free) and paid advice and support to charities. This can work really well when there is a specific legal issue – for example, getting a formal opinion from a QC on a particular legal question that comes up in the passage of a Bill through Parliament or intervening in a particular case.

However – with the decimation of legal aid it will become harder to find expert lawyers who are willing and able to provide free advice to charities. Corporate lawyers will no doubt remain willing to offer pro bono support – but they are unlikely to have the specialist knowledge and expertise that charities need in their particular policy areas. Finally, getting in outside advice reduces the chances of building up legal expertise within a charities’ own campaign team.

So I’m firmly of the view that charities need to put some of their funding for campaigning towards recruiting in-house lawyers to work with their campaigns teams. Thoughts on this and examples of where this has worked – or not – welcome in the comments below.

Key legal rights for looked after children and care leavers

Nothing increases my level of outrage like the law being ignored. This is precisely what happens routinely with looked after children (children in Local Authority care or accommodated under section 20 of the Children Act 1989) and young people leaving care. It is particularly outrageous that the law should be flouted over and over again in relation to such a vulnerable group. The routine disrespect for the legal duties has led to a campaign, Every Child Leaving Care Matters, which has a Parliamentary event coming up on 11 September. In an attempt to help end this, I am setting out here what I think are some of the key legal duties. Please share this post far and wide with everyone working with looked after children and care leavers.

Firstly, I have already written about the duty in section 22C of the Children Act 1989 to place looked after children in the ‘most appropriate’ placement available for them. The most appropriate placement is generally the one closest to the family home, which meets the needs arising from any disability the child has, which allows siblings to live together and so on. This duty carries on until the child turns 18. What are the differences between the legal duties owed to looked after 7 year olds and looked after 17 year olds? Nothing – except for the additional planning duties in relation to older teens (see below). Importantly, everything done for all looked after children is subject to the duty in section 22(3) of the Children Act 1989 that Local Authorities must ‘safeguard and promote’ their welfare.

Why are young people still leaving care at 16? This isn’t just against policy and guidance – it is unlawful. The duties to look after children under the Children Act 1989 carry on until 18. The only reason older teens (or indeed any child) should be leaving care is because the problem which has meant that they cannot live with their families has gone away. In fact 16 and 17 year olds who remain looked after are ‘eligible children’ under the leaving care scheme and are entitled to a personal adviser and pathway plan, as described below in relation to care leavers. This is additional to their rights as looked after children, not a substitute status.

So if children are being forced out of placements at 16, this is unlawful – unless the new placement is the ‘most appropriate’ one available for them. The remedy is judicial review. Critically, pretty much all looked after children (and indeed almost all young care leavers) will be eligible for legal aid. So why aren’t judicial reviews being brought all over the country? It can only be because children and young people don’t know there rights or who to turn to for help. Let’s change this.

What happens when a looked after young person turns 18? Well the vast majority (who meet the minimum requirement of 13 weeks’ time looked after from their 14th birthday) will become ‘former relevant children’ and will be entitled to a significant amount of ongoing support from their Local Authority. These young people should have a ‘pathway plan’ in place setting out what help they will need and receive in their transition to an independent adulthood. They should have a ‘personal adviser’ to advise, assist and befriend them. And importantly, if they need help with accommodation (for example, if they are not eligible for Housing Act accommodation for any reason) the Local Authority will have to provide it – see Children Act 1989 s 23C (see sub-para 4(c) – the very broad duty to provide ‘other assistance’ to the extent that the young person’s welfare requires it). The Local Authority’s duties to young people leaving care could even extend to meeting the cost of university tuition fees.

The duties to support young people leaving care run at least until the young person turns 21, and potentially up to 25 if they remain in education or training. A run of cases in the past ten years, including R (J) v Caerphilly and R (G) v Nottingham CC, highlighted the massive gap between what the law requires and practice on the ground – a gap which depressingly does not seem yet to be closing. For example, Barnardo’s has found systemic use of bed and breakfast accommodation for young people leaving care, which the government’s guidance says is unsuitable. All these Local Authorities are highly likely to be in breach of their leaving care duties to these young people – for example, how can a young person placed in bed and breakfast accommodation on a long term basis have a lawful pathway plan?

There is also a very important new duty allowing young people in foster care to remain in their placement until they turn 21 – see section 98 of the Children and Families Act 2014 concerning ‘staying put’ arrangements. There seems to me to be no good reason why this should not also be extended to young people in residential care – as Every Child Leaving Care Matters are proposing.

There is a vast amount of guidance on the duties owed by Local Authorities to looked after children and young people leaving care. The most important is the statutory guidance in Volume 2 (looked after children) and Volume 3 (care leavers) of the Children Act guidance set. The overriding message behind all the regulations and guidance is simple – Local Authorities are supposed to act like good parents towards children in their care and young people leaving their care. So if a Local Authority acts in a way that no good parent would act – it’s probably unlawful.

The key duties to looked after children and young people leaving care are summarised in the Children In Need book I co-authored for Legal Action Group. It costs £50 – which I know is expensive, but it’s cheap for a law book and all the profits go to LAG, which is an amazing campaigning charity. I hope that groups and organisations working with children and young people will find it a worthwhile investment – the second edition was published late last year and it still reasonably up to date although it does not deal with the Children and Families Act 2014.

Please post any questions or queries about the duties to looked after children and young people leaving care in the comments below.

Easier Read – #LBBill – making the Mental Capacity Act work

This is the easier read version of my last post on how #LBBill could change the Mental Capacity Act 2005 to make it work better for disabled people and families. Thanks again to Anne Collis at Barod for these easier words.

People are talking about what to put in the #LBBill.

Here are two things people are talking about.

• Independent advocacy. This means having someone to speak up for you, or to help you speak up. I think this will be in the new Care Act. So it does not need to be in #LBBill as well.

• Some people with autism or learning disabilities get ‘sectioned’. This means they have to get treatment even if they and their families do not want it. The law about this is called the Mental Health Act 1983. I think this law needs changing but it will be difficult to do this. I will write about this in another blog.

This blog is about changing the Mental Capacity Act 2005.

The Mental Capacity Act is about who can make decisions.

The Act says how to work out if someone is not able to make their own decision about something. Then, it says how that decision should be taken for that person.

I think #LBBill can make two changes to the Mental Capacity Act:

1. The Act must stop saying people’s wishes and feelings are just one thing to think about. The Act must say people’s wishes and feelings are the most important thing to think about.

2. The Act must stop saying that professionals may listen to family members. The Act must say family members must be consulted unless it is proved that this would be bad for the disabled person.

I think these two changes will make it harder to move disabled people away from their communities where this isn’t what they want.

What do you think? Would these changes help?

Can you think of other ways to make the Mental Capacity Act work better?

Please keep talking about what you think needs to be in #LBBill.

And have a look at this beautiful quilt made in LB’s memory. 

#JusticeforLB

#Justiceforallthedudes