Childcare for disabled children – reasonable adjustments and the right to ordinary lives
by stevebroach
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.
rightsinreality 
Thankyou as ever for providing clarity. I have become frustrated recently by the perception and in fact comments made by those working with families that parents of disabled children would be better not working – yes we hear it ! Of cause we disagree and are aware that the benefits of working are far more than financial for many of the working parents we know. Messages seem to have been clouded I feel since aiming high guidance developed to offer ‘guidance’ on short breaks has become like a mantra and set in stone rather than truly around individual need leaving comments to be made by social workers such as ‘ you can’t use direct payments for childcare’ you can’t use short breaks for working its childcare’ ‘we don’t do childcare’ is another and ‘ it’s just the same for any working parent ‘ …. No it’s not right we know and fight that corner but the breadth of the provision under CSDPA s2 seems to have been lost between this and the difficulty to get through thresholds to social care that are often more focused on child protection. We are fortunate that we are commissioned to provide an inclusion service to support children in mainstream childcare or to develop specialist childcare where required. Our issue is often the limits of funding and our range of scope that to meet the requirements of the family we often suggest referring for assessment to add to enhance or better meet need than what we can offer. This is where the barriers and challenges are then met. There is particularly difficulties around accessing suitable childcare for older children (over 11) there just doesn’t seem to be the understanding there about need or that there is legislation that services can be provided.
How will the Care Act help Steve ?
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Thanks Catherine – excellent comment. It is vital that childcare and short breaks are not traded off against each other. Both are vital services but they do different things – short breaks (when done properly) give parents a break from caring and provide children with opportunities to have fun, childcare should be a regular and reliable service to help children’s development and support parents to work or study. I’m not saying this distinction is hard and fast but it’s terrible to hear local authorities trying to use one to undercut the other – many families will need BOTH.
Promise to blog about the Care Act soon – but I’d like to wait for the regulations and guidance to be finalised so we can see the shape of the whole scheme. It doesn’t come into force until April 2015.
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Another great and very helpful article Steve – Thanks. Am I right in thinking that the Children and Families Act removed the duty on local authorities to carry out Childcare Sufficiency Assessments?
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Yes Mark – this was in section 11 of the Childcare Act 2006 which was repealed by section 86 of the Children and Families Act 2014. Hugely unhelpful as this was a key mechanism to ensure compliance with all the Childcare Act duties.
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There is no such thing as “nursery child care” for children like our daughter Amélie, who has a tracheostomy, gastrostomy and deaf/partially sighted. One parent had to give up their employment to care for her 24/7.
There is still no after school clubs for such children either. We opted for direct payments and family provide our support. Partly a lack of trust from care providers and a lack of sign language therefore unable to understand her signs and communicate back to her.
Isolating, rewarding and financially crippling are words to describe life following the birth of a child with complex needs requiring 24/7 care.
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I’m very sorry to hear how hard things have been for you and your family. I can’t advise here on individual cases for obvious reasons – so all I can say is that your Local Authority has a duty to make sure there is provision that your daughter can access. Are you in touch with your parent carer forum? Have you considered speaking to a solicitor about your rights? No parent should have to provide 24/7 care.
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Thanks for reply I honestly believe a large number of parents whose children have complex disability choose to provide the majority of care themselves especially with multi-sensory impaired children. Carers generally lack british sign language to a level acceptable for communication.
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i agree with your comment although our situations differ, i have always felt that sign language for one should be a core subject in school from reception to help from discrimination also there should be lessons in school educating all children of disabilities ect. in my circumstances however obtaining after school placement is a battle and unsuccessful one for some years and there is no priority where there should be, children with additional needs attending the school should receive more priority because in many cases it is the only option as private childcare is either too expensive and even then it is unaccessible as in my case it not be possible for a child minder to look after multiple young children and walk my son to school as he would need a wheelchair, thus meaning i cannot access the education i should be entitled to putting work even further out of access for me as a single mother with no support from family, the problem is the clubs always say your on the waiting list but the case is still the same years on which is very subtle discrimination.
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It’s very difficult for majority of parents with children special needs. We would need a tracheostomy/gastrostomy trained carer who is also sign fluent.
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Hi there, many thanks for this. I was wondering if you had any information with regards to disability and main stream education?
My son as Sowns Syndrome is in year. 5 of primary school mainstream. He also has kidney failure which impacts his bladder and toileting skills. The school are not differentiating the curriculum to meet his needs and he is now presenting challenging behaviour we believe because the school are not supporting his needs. He has a statement with full time care and all that is fulfilled but it’s the actual education of our son that isn’t happening correctly and we wondered if you have any legal information regarding this subject?
Thanks so much in advance
Julie
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Seek advice Julie, from such as IPSEA: .
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Wub Wub Wub dot IPSEA dot Org dot Uk slash About
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Thanks for another useful blog. Our local authority also says parents who meet the criteria for specialist services can’t use them while they work and the same goes for short breaks services. Childcare is woeful, particularly for the older child. Not helped by the fact it’s managed by early years. Even for younger children, childcare inclusion funding is being cut and, at a recent meeting it was suggested parents use their DLA to cover the additional costs which providers are passing on to them.
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Very depressing Carol. Most if not all of this highly likely to be unlawful. Are you taking legal advice?
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I presume this ‘childcare’ you speak about doesn’t apply to children over 11. Right?
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Not right, I’m pleased to say. While some of the childcare duties only apply to young children, the central sufficiency duty under section 6 of the Childcare Act 2006 I describe above applies to disabled children up to 18 – and non-disabled children up to 14. The other relevant duties I talk about in the post – the public sector equality duty, the duty to make reasonable adjustments, the CSDPA 1970 social care duty – have no age limits.
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To enable to work a full day, I would have to pay for double childcare for my disabled 13-year-old son and my two younger children because of logistics of pick-ups/drop-offs and because it is difficult for one carer to look after all of them (except me, of course!). And not allowed to use the Direct Payments to help fund this double childcare and no family to help.
This has been made worse by council-funded school transport bus refusing to drop son at a council-funded after-school club (because there are no after-school clubs at special secondary schools!) paid for by my council-funded Direct Payments, even though the bus drives less than 500 metres past the site.
For these reasons, I have not been able to take up a proper job for years as after-school care is so problematic and expensive. I have lectured social services, SEN and transport today on how they should be working together more to support families but to no avail really.
When only 16% of mothers of disabled children work, then I believe short breaks should also be seen as an opportunity for a parent to work – to be fulfilled and earn money (and get a break from caring) for that will help keep the family in a state of wellbeing and prevent poverty and family breakdown, which will end up costing services more.
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I think a key part of your post is “there is a huge gap between legal rights and families’ realities”. The law actually seems very comprehensive about what should happen but if you try and speak about this to the authorities they look at you as if you’ve got two heads. If you make a complaint about their not doing what they are meant to you suffer as a result of it. It’s 6 months since we started our continuing care assessment and 11 month since we started our social care assessment and neither of them are completed. Every time we ask them to make sure provision is put in place so that we can live our lives, such as you describe in your posts and in accordance with the law, they go off on a rant about our expectations being unreasonable (by asking them to comply with the law…..) and put our case back to the bottom of the pile to not be progressed for a month or 2. On the 15th of this month we have an annual review for our child in need assessments which have not even been completed yet! When we challenged an issue with our historic care package the care provider responded by withdrawing from the package without notice leaving us with no care at all. This wasn’t a one off, it was the third time this has happened to us and is regularly threatened to other parents we know with similarly complex children and is simply a result of asking the authorities to comply with the law regarding respite.
I know you often reply that you can’t respond to individual cases and that parents should contact a solicitor for legal advice. I did that. From one of the firms recommended on your link. The complexities of having twins which are both about as severely disabled as it’s possible to be, the complicated interaction between health and social in providing care, and the specific training needed by care staff to deal with a tracheostomy completely flummoxed them. They acknowledged the situation was a complete and utter mess but had no plan to be able to help resolve the situation. This has left us in the same situation we were in, but several thousand pounds in solicitors fees out of pocket which we couldn’t afford in the first place.
The law puts a lot of protection and provision in place, but this makes next to no difference in day to day life for parents because the people who are meant to follow them and support parents ignore them with seeming impunity.
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This is very concerning Paul. From the summary you give it seems obvious that there are things lawyers can do to progress your case.
Can you email me in confidence at sbroach at monckton dot com to tell me which firm you used and more about what happened?
Thanks
Steve
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This is very interesting to me. I was one of the witnesses for the Parliamentary Inquiry. My soon is 2.5 with cerebral palsy. I work. He is in a mainstream nursery for whatever part of 4 days a week he is not in appointments. I have written on my blog about our difficulty in getting secure funding, but he is now in receipt of discretionary funding, 15 hours a week. We went down the statementing route in June in a bid to get more 1:1 as our son can participate in all aspects of the EYFS curriculum with support but none without it. And we wanted his physio etc. quantified. Also we are heartened by various preschool 2 year olds with CP in other LAs who have 26 hours 1:1 in mainstream nurseries. The draft statement for our son arrived yesterday. There is no quantification or specificity about hours of physio etc a week. And no quantification of 1:1. I phoned his case worker to discuss this and was fobbed off but the conversation ended with her saying even if our LA agrees to quantify 1:1 he would never get more than the 15 hours because that is all the education any child that age is entitled to and I should work around it (you know: all those 15 hour a week term-time jobs out there ). If he gets no more support and I give up work we would lose our home, we would likely have to love our of area. Our daughter would have to change schools. That is the reality. And it is terrible.
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Really sorry to hear this. Powerful example of how we are still a million miles away from a properly joined up system. I firmly believe the law requires families with disabled children to be able to lead ordinary lives – and as you say most parents don’t have 15 hour per week termtime jobs. Whether this is resolved via the statementing route (or EHC planning from now on), via additional social care funding or by childcare providers making reasonable adjustments, it needs to be resolved – otherwise in my view the state as a whole is in breach of its human rights obligations to disabled children.
Your situation is precisely why this hotchpotch of legislation we currently have needs to be replaced by a coherent Disabled Children’s Rights Act. I’m brewing a fairly epic blog post about this…
In the meantime, while I can’t offer any case advice, I can say I fervently hope you get the support you need or the help required to take legal action if you don’t.
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mrboosmum, do consider seeking informed advice about what you can do next in response to the proposed statement.
For instance, IPSEA (Independant Parental Special Education Advice) may be able to help you.
“Advice and Support
IPSEA’s trained volunteers give free, legally based independent advice and support in England to help get the right education for children and young people with SEN/disability.”
Some of what you reported your case worker said sounds hinky.
“…never get more that 15 hours…” reminds me of what we were being told by an education officer when our son was approaching nursery – twenty-two years ago.
We got help. From IPSEA.
Our son spent nearly of his school life in mainstream, as we wanted.
Mostly with full support.
Amongst the fallout was my getting trained and working as an IPSEA advice line volunteer for 10 years!
You do have some power in the statement situation, mrboosmum.
Find out how to use it.
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[…] have blogged previously about the right to childcare for disabled children. Since I wrote that post, I have come across a great judgment in a case about cuts to nursery […]
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Really helpful article. Re the 16% statistic of mothers of disabled children do you know what the figure reduced to for single mothers of disabled children? I’m guessing it will be lower.
With many thanks
Nicola
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Thanks Nicola – I don’t have that stat but I’m sure you’re right. You could ask Contact a Family e.g. on Twitter.
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[…] also have duties to make reasonable adjustments for disabled children and young people, to support with medical conditions and to inform […]
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So pleased to have found your blog. I’m trained in a profession, and went to university when the state covered most of the costs. This expertise and potential taxable work is being wasted. I now work only one day per week because of the nightmare that is care in school holidays (until 2 years ago, when my daughter was still primary school age, she attended mainstream afterschool and holiday clubs, so I was still able to work.) I’ve been depending on my 78-year old mother, but that’s not really an option any longer.
I’ve been told that my direct payments cannot be used for childcare (and anyway, I don’t get any extra in the holidays).
I see a big battle on the way!
I assume I need to get myself a parent carer’s assessment as a first step, arguing my right to work?
It’s crazy that the expertise I’ve gained over 30 years in my profession is now being wasted.
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Glad to help Kate. As well as a PCNA, you might want to check out this post on rights to childcare: https://rightsinreality.wordpress.com/2014/09/30/childcare-for-disabled-children-reasonable-adjustments-and-the-right-to-ordinary-lives/
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Just to say (since the media has ignored the issue) that it is hugely disappointing the Govt has cut tax credits which hit parent carers of disabled children hard without sorting out the legal mess that is childcare for disabled children. I suspect there are many families like mine where both parents work reduced hours / one on carers allowance and we rely on tax credits to manage. We will lose £1500-2000 in tax credits a year and unlike other families can’t work more hours to make up the shortfall. The minimum wage won’t help us – we both have professional level jobs and when we do work earn more than £11 hour so the NLW won’t help us. Our income is low not because we are earning a low wage but because we work lower hours. Like many families we had good jobs before we had a disabled child which we have had to give up or reduce. At a recent short breaks consultation to cut money from the service the council said it had no legal responsibility to provide childcare to help parents of disabled parents work and wouldn’t be doing so. I am not aware of any summer holiday schemes running and even if they are they will only be available to the most profoundly disabled children, not those with autism who need 1:1 for safety reasons. There are no short breaks for children with high functioning autism, only a £500 grant for carers which runs out early in the year. Now carers who do get £500 grant which was supposed to give them a ‘break’ will have to use it to live on or pay for 1:1 in childcare while they work.The Govt could have recognised parent carers as a group whose income was effectively fixed, like pensioners, as they couldn’t work full time. it could have compensated by increasing carers allowance to £100 week to make up for the cut in tax credits. Instead it just made families with disabled children £2000 a year poorer and (with the exception contact a family) not a single charity or newspaper has even noticed, let alone started a campaign.
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Very powerful points Joolz. As the blog post makes clear it’s not right to say that councils have no legal responsibility to provide childcare to allow parents with disabled children to work – that runs directly contrary to the duties in section 6 of the Childcare Act 2006.
It may be that the Budget tax credit cuts need to be challenged legally in relation to their discriminatory impact on disabled children and their families – I’ll blog / tweet about any such case I see.
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Joolz, We are in the same position, we both work and have four children and as such will loose £2100 from April 2016, I have emailed the various papers, ‘contact a family’, ‘disability rights’ and no one has picked up on it, most people will not realise the damage that has been done until they get a renewal notice by which time it will be too late to act.
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[…] Childcare, including childcare for disabled children up to the age of 18, under section 6 of the Childcare Act 2006 […]
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Hi,
Thank you for your posts and information, which have been very useful to us.
After writing to our nursery provider, challenging them on the extra cost of 1:1 support under Equality Act 2010, we were told, by a solicitor, that the nursery could legitimately charge us the extra cost of 1:1 support because they would know the costs.
His reasoning was that a House Of Lords select committee had made the following recommendation:
“We have sympathy for those calling for greater clarity on how
‘reasonable’ cost is determined, but question how far this is
possible given that this can be a matter of judgment rather than
objective criteria. Exercising this judgment does, however, require
information, and guidance should make it clear that an adjustment
should not be rejected as unreasonable on grounds of cost unless the
expected cost is known.”
Could you possibly comment on this?
Thanks
G
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Afraid I don’t understand this. Firstly, a Parliamentary select committee does not give legal guidance. Secondly, all the Select Committee seems to me to be saying is that an understanding of the expected cost is necessary for an adjustment to be rejected as unreasonable – that cannot mean it is sufficient. What if the expected cost is £1? You may want to go back or seek advice elsewhere.
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