rightsinreality

Thoughts on the crossroads of law, politics and society – for when 140 characters just won't do. 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.

Month: July, 2015

The rights of siblings of disabled children

This post considers the rights of an often-neglected group of children – siblings of disabled children (also known as ‘brothers and sisters’ off Planet Social Care). Given there are 700,000 disabled children, that’s an awful lot of siblings whose interests are being neglected.

I’d been meaning to write this post for a while as the issue comes up regularly when I speak to parent forums, but it went to the top of the list after I saw this powerful article from Saba Salman, focusing on adult siblings (who have new rights as carers under the Care Act 2014). For this post I’ll use the shorthand ‘siblings’ to mean a child who is the brother or sister of at least one disabled child.

The starting point is of course that siblings have the same rights to access universal and mainstream services as all other children – schools, playgroups, children’s centres and so on. Siblings also have the right to access these services without discrimination ‘by association’ – meaning they cannot be discriminated against because of their connection to a disabled child. There is an example of this in government guidance:

Sonali is refused a place at her local playgroup because the management committee knows that her younger brother has cerebral palsy. They operate a policy of automatically offering places to siblings and they are concerned that looking after her brother would take too much time. This is direct discrimination against Sonali because of her association with her brother.

However, it appears that discrimination by association only covers instances of direct discrimination and harassment – for example, the Court of Appeal has held that there is no entitlement to reasonable adjustments by association with a disabled person.

What about entitlements to additional support for siblings, over and above the services available to other children? There are two potential routes to access this support – the ‘child in need’ route and the young carers’ route. Both routes are linked and are considered in turn below.

Firstly in relation to the child ‘in need’ route, it is important to bear in mind that under section 17(3) of the Children Act 1989 services can be provided to any member of a child in need’s family, if it is provided with a view to safeguarding or promoting the welfare of the child in need. As all disabled children are children in need*, a local authority may therefore provide any services it wishes to a disabled child’s sibling(s) where these would safeguard or promote the disabled child’s welfare. An example might be to fund a regular activity session for the sibling to help reduce tension where the relationship between the sibling and the disabled child is deteriorating.

Secondly, siblings may themselves be children in need – not least because of the impact of them of the needs of their disabled brother or sister (or more accurately perhaps the lack of support their disabled brother or sister receives). Assuming the sibling is not themselves disabled* then they would need to meet the tests in section 17(10)(a) or (b) to qualify as ‘in need’. These are that:

a. he is unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him of services by a local authority under this Part; or

b. his health or development is likely to be significantly impaired, or further impaired, without the provision for him of such services.

Either or both of these tests may well be met where, for example, a sibling is living with a child with autism in unsuitable or overcrowded accommodation and is unable to study or play as a result. In many cases, the only way in which the local authority will be able rationally to determine whether either of these tests is met is to carry out an assessment under the Working Together statutory guidance.

So many (most?) siblings of disabled children will be entitled to a child in need assessment in their own right to determine whether they are ‘in need’ and if so what if any services the local authority ought to provide to them. That decision will have to be taken rationally, reasonably and fairly and with all the relevant information considered, including of course the child’s own views. There is however no absolute right to support under section 17 of the Children Act 1989 – by contrast to the Chronically Sick and Disabled Persons Act 1970 which imposes the key duty to support disabled children.

The second route to additional support for siblings is the new set of rights given to young carers under section 94 of the Children and Families Act 2014. Section 94 inserts new sections 17ZA-17ZC (bear with me…) into the Children Act 1989. These create a new right to a ‘young carers’ needs assessment’ which has significant parallels with the parent carers’ needs assessment about which I have previously blogged.

To make sense of this new right (since April 2015) we first need to understand who is a ‘young carer’. The definition is very broad – it is a person under 18 who provides or intends to provide care for another person and is not doing so under a contract or as voluntary work.** This would clearly include a sibling who provides any level of care to a disabled child. It is also important to note that ‘care’ includes the provision of practical or emotional support (section 17ZB(5)). So any sibling who does any practical tasks for their disabled brother or sister or who provides them with any emotional support is a ‘young carer’.

The duty on local authorities is to ‘assess whether a young carer within their area has needs for support and, if so, what those needs are’ (section 17ZA(1)). The bar for when a local authority must carry out such an assessment is set very low – either the appearance of need for support or a request for an assessment from a young carer or a parent of a young carer is sufficient to trigger the duty to assess.

Importantly, section 17ZA(7) reads as follows: ‘A young carer’s needs assessment must include an assessment of whether it is appropriate for the young carer to provide, or continue to provide, care for the person in question, in the light of the young carer’s needs for support, other needs and wishes.’

This seems to me to be an absolutely central consideration. I am very uncomfortable about any assumption that a child should be providing care for another person. There is certainly no legal requirement on a sibling to provide care – although I recognise that the practical reality is that many siblings who provide care may feel they have little choice. Section 17ZA(7) should make sure that any child providing care is actively choosing to do so and is properly supported in the caring role.

There are a number of links between the young carers’ needs assessment and the child in need assessment of the disabled child. Firstly, these assessments can be combined if both children agree (section 17ZB(7)). 

Secondly, the point of a young carers’ needs assessment is to determine whether services should be provided to the young carer under section 17 of the Children Act 1989 – this presumably being a reference to the power under section 17(3) discussed above, although this still requires the services to safeguard or promote the disabled child’s welfare.

There is also a power for a young carers needs assessment of a sibling to be done at the same time as any other assessment of the sibling – which would include a child in need assessment (section 17ZB(6)). So it would seem to make sense to request a combined young carers assessment to look at the siblings care related needs and child in need assessment to look at wider needs. The local authority would need to have good reason to refuse a request to take this joined up approach.

Regulations have been made which expand on the young carers’ needs assessment duty. Regulation 2 sets out general requirements of the assessment process, starting with the principle that the assessment should be ‘appropriate and proportionate to the needs and circumstances of the young carer’. Regulation 3 mandates the training and expertise required of those carrying out assessments.

Regulation 4 is particularly important, because it sets out a startlingly long list of decisions the local authority must make at the conclusion of the assessment process. This includes determining ‘whether any of the young carer’s needs for support could be prevented by providing services to (i) the person cared for, or another member of the young carer’s family’ (Regulation 4(2)(e)). Further, regulation 4(2)(h) requires the decision to be taken at the conclusion of a young carer’s needs assessment as to whether the sibling is a child ‘in need’ themselves. Any lawful assessment will need to result in decisions in relation to all the matters specified in regulation 4, which must of course then be shared in writing with the sibling and their parent(s) (section 17ZA(10)). 

So the scheme under the Children Act 1989 (as amended) clearly provides for careful consideration by local authorities of the additional needs of siblings, particularly where they meet the low threshold to be treated as ‘young carers’. However even siblings who are not involved at all in the care of their disabled brother or sister may still have a right to assessment and may potentially receive services as a child ‘in need’. The Children Act therefore reflects the positive obligation in Article 8 of the European Convention on Human Rights to provide support to enable family life to continue for families with disabled children. Indeed in certain cases Article 8 and the relevant international conventions may create the duty to provide such support following an assessment.

I hope this review of a typically complex area of social welfare law is some help for families looking for additional support. Any comments welcome, including where people have tried to access support for siblings using either of these legal routes.

For support and advice generally for siblings of disabled children (and adults), check out the website for the excellent charity Sibs – and their Youngsibs website for siblings themselves.

* see Children Act 1989 section 17(10)(c) and (11) for the very broad definition of ‘disabled’.

** Children Act 1989 section 17ZA(3) and 17ZB(3). A local authority may choose to treat ‘professional’ child carers as young carers, see section 17ZB(4) – but I find it hard to imagine when it would exercise this power.

Mathieson v SSWP – another Supreme Court win for disability rights

I had the privilege to act for the Mathieson family in the Upper Tribunal and the Supreme Court. This blog post has been approved by Mr Mathieson and his solicitor, Mitchell Woolf at Scott-Moncrieff and Associates. This post is dedicated to Cameron’s memory as a little boy who has left a great legacy for other families with severely disabled children. 

The Supreme Court’s judgment yesterday in Mathieson is an example of the state running far behind the way society now responds to childhood disability.

The issue for the Supreme Court was whether the rule which suspends payment of Disability Living Allowance (DLA) to disabled children once they have been in hospital for 84 days breached the human rights of Cameron Mathieson. Cameron was a severely disabled boy (aged 3 at the time his DLA was suspended) who had both extremely complex needs and the most loving family a little boy could wish for. As the judgment records, the suspension of Cameron’s DLA had a very significant impact on the family’s finances – and indeed on Cameron himself, in that for example fewer family visits could be arranged to him in hospital once DLA was suspended.

The family challenged the suspension of Cameron’s DLA through a lengthy legal appeal. They lost in the First-Tier Tribunal, in the Upper Tribunal and in the Court of Appeal. Cameron sadly passed away during the Tribunal process but to their immense credit his parents continued the fight, in large part to benefit other families.

At each stage prior to the Supreme Court, the Tribunal or Court accepted the Secretary of State’s argument that allowing DLA to continue would be ‘double provision’, because all children’s disability-related needs are met for them in hospital by the NHS. However the Supreme Court comprehensively and unanimously rejected this argument.

The leading judgment by Lord Wilson shows full acceptance of the modern reality of paediatric care, being that families and NHS professionals are partners in the care of sick disabled children in hospital. Essential evidence was produced by the charities Contact a Family and The Children’s Trust to show that in almost every case the level of parental care stays the same or goes up when a disabled child is admitted to hospital. The Citizens Advice Bureau at Great Ormond Street Hospital gave stark evidence that if parents seek to leave their children at GOSH then hospital social workers are informed – because parents are required to attend hospital and ‘take an active part in [the child]’s medical management’.

Lord Wilson recorded that the government simply could not answer this evidence. At para 37 he stated: ‘…there is nothing before the court to indicate that…the Secretary of State has asked himself: are benefits nowadays overlapping to an extent which justifies the suspension of a child’s DLA following his 84th day in hospital?’.

So the Supreme Court found that the rule discriminated against Cameron contrary to Article 14 of the European Convention on Human Rights. Because the rule is set out only in secondary legislation (as opposed to an Act of Parliament) the Secretary of State acted unlawfully under section 6 of the Human Rights Act 1998 in following it and suspending Cameron’s benefits. The family will therefore be entitled to a back payment of the sums they should have received. All this is summarised much more elegantly by Lord Wilson in para 48 of his judgment.

What does this mean for other families? As Lord Wilson noted at para 49, ‘Decisions founded on human rights are essentially individual’. So while the rule remains, the question will need to be asked in every case where a disabled child has been in hospital for 84 days whether it would breach his or her human rights to suspend payment of his DLA. Where his or her family are continuing to provide a high level of care to the child it would seem that the answer to this must inevitably be yes and the benefit must continue. As Lord Wilson noted (also para 49), ‘the court’s decision will no doubt enable many other disabled children to establish an equal entitlement [to Cameron]’.

At present it will be necessary for other families to appeal to the First-Tier Tribunal to challenge any suspension decision made under the existing rule. Evidence will need to be presented to show that the family continue to be actively involved in the child’s care in hospital. However it is to be hoped that the Secretary of State will respond quickly and either scrap the rule or at least modify it significantly to take full account of the Supreme Court’s judgment so that such appeals become unnecessary.

This still however leaves other important questions unanswered. The most obvious is the position of 16 and 17 year olds, who are children for the purposes of national and international law but who are treated as adults under the benefit rules, so lose payment of their DLA after just 28 days in hospital. Equally, what about disabled young people over 18, whose families continue to provide them with significant support but who also lose their DLA after 28 days in hospital? It is likely that these questions will need to be answered through further litigation unless the Secretary of State does the right thing and scraps these rules entirely.

Any Supreme Court judgment has wider implications, and there are at least three I want to highlight from the judgment in Mathieson:

  1. The Justices have taken a very liberal approach to the vexed question of what constitutes a ‘status’ for the purpose of Article 14 ECHR. All five Justices concluded that Cameron has a relevant ‘status’ as a sick disabled child in hospital, as opposed to disabled child cared for at home – see eg Lord Wilson at paras 19-23. It is particularly helpful for future cases that Lord Wilson strongly suggests at para 23 that different levels of impairment can amount to a difference in ‘status’.
  2. Mathieson is the latest in a line of recent Supreme Court judgments, most notably in the Benefit Cap case, where the international human rights conventions have played a significant role. At para 41, Lord Wilson found that the Secretary of State was in breach of his international law obligation to treat disabled children’s best interests as a primary consideration – this obligation being imposed by Article 3(1) of the UN Convention on the Rights of the Child and Article 7(2) of the UN Convention on the Rights of Persons with Disabilities. This then assisted the court in finding a breach of Article 14 ECHR, because of the requirement to read the ECHR in harmony with the principles of international law (see Neulinger v Switzerland and Lord Wilson in Mathieson at para 44). There is therefore a growing trend in the Supreme Court (if not yet in the Court of Appeal) towards giving significant weight to relevant international instruments in deciding human rights cases.
  3. There is a significant run of cases which state that the appellate courts should defer to the expertise of specialist tribunals. Lord Wilson considered those cases in his judgment at paras 45-48; while accepting the principle, he held that the Upper Tribunal had made errors of law in its decision such that its decision did not need to be followed (by contrast to Obrey v Secretary of State for Work and Pensions).

One further issue did not get any consideration in the judgment, which is the relevance of the right to respect for family and private life contained in Article 8 ECHR to the decision to suspend payment of Cameron’s DLA. Because it was accepted by the Secretary of State that the decision fell within the scope of Article 1 of the First Protocol to the ECHR (the right to peaceful enjoyment of ‘possessions’, which includes state benefits), Lord Wilson did not find it necessary to consider the arguments addressed to Article 8. It may be that those arguments take on more significance in another case where (unlike DLA) the benefit is paid not to the child but the parent.

On a practical level, Cameron’s case is an excellent example of strategic litigation in action. The potential to challenge the 84 day rule through an appeal relying on the Human Rights Act was identified in discussions between the charities and lawyers. Cameron’s family received pro bono assistance from the estimable Mitchell Woolf at Scott-Moncrieff and Associates in the First-Tier Tribunal. Some exceptional legal aid funding was obtained in the Upper Tribunal and standard legal aid funded the appeal in the Court of Appeal and the Supreme Court. Throughout the appeal the charities gave fantastic support on social and mainstream media as part of their Stop The DLA Takeaway campaign. In my view Cameron’s case provides an excellent example of how litigation can form an important part of a wider campaign to bring about social change – and hopefully one that can be followed in other areas. The key message is that lawyers and campaigning charities need to work closely together from the outset.

All these implications will play out in future cases. At present we have a further example of the Supreme Court taking disabled people’s rights seriously and applying rigorous scrutiny to the state’s justification for its policies. We should all welcome the fact that we live in a society where the highest court is both willing and able to tackle injustice in state decision making such as that present in Cameron’s case. Given the direction of travel it is likely that a number of other such challenges relating to disabled people’s human rights will continue to come before the highest court.

Disabled children in Africa – the AbleChildAfrica appeal

Disabled children in Africa face all the same barriers to inclusion as disabled children in the UK, but magnified. 

For example, while many families with disabled children in the UK struggle to get them an appropriate education, most disabled children in Africa get no education at all. While UK disabled children face bullying and harassment, disabled children in Africa often have to contend with isolation through social stigma associated with cultural beliefs about disability. 

A number of grassroots organisations has sprung up to help address these challenges. Many of them are partners of AbleChildAfrica, a UK based charity for which I am proud to be a trustee. We work with our partners to improve provision, raise awareness of disabled children’s rights and lobby government locally, nationally and internationally. Our partners have formed a network of self-sustaining organisations helping each other to improve the life chances of disabled children in Uganda, Kenya and Tanzania.

For a small charity, something like a Radio 4 appeal is a big moment. It’s our moment in the spotlight now and the AbleChildAfrica appeal is here. I would be very grateful if all readers of this blog who care about disabled children’s rights could take a moment to listen to the appeal and if possible donate. 

Those involved in the fight for rights and justice for disabled children in the UK will find lots of familiar aspects to the work of AbleChildAfrica and our partners. To take one example – the parent support groups run by the Uganda Society for Disabled Children (USDC) are doing very similar things to the parent forums in every local authority in England – bringing parents together to support each other and lobby those with power to improve provision.

So the goal of rights and inclusion for disabled children is the same the world over, but the African context makes realising this goal even harder. To the extent you can afford please help AbleChildAfrica in our vital work through our appeal.

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