The rights of siblings of disabled children

by stevebroach

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.