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.

Tag: SEN

New case law updates on disabled children’s rights

Quick post (first for some time) to flag the new case law updates published by the Council for Disabled Children with its Summer Digest. These will hopefully be of interest to disabled young people, families and professionals.

The first covers two Upper Tribunal appeals brought by Hillingdon and Buckinghamshire. Both appeals considered the appeal rights for young people (aged 16-25) and the approach to be taken where a young person lacks capacity to bring their own appeal. The Buckinghamshire decision gives important guidance on the meaning of ‘education’ for young people.

The second is about another important Upper Tribunal decision (this time in an appeal by Staffordshire) which gives clarity about school transport entitlements for young people. It is important for young people and families to note the conclusion that the Tribunal cannot resolve disputes in relation to school transport and that the correct remedy is judicial review.

The third concerns a successful human rights claim against Kent in the context of care proceedings. The judgment suggests that serious failures to comply with the duties owed to disabled children under the Children Act 1989 may result in breaches of the Human Rights Act 1998, which may in turn lead to damages being awarded.

All three updates are themselves summarised in the main CDC Digest (see p14 onwards).

Challenging local cuts – some key legal questions

Following the political choices set out in the recent Spending Review, it would seem inevitable that local authorities are going to need to make cuts to important services next year, including those provided to children and disabled people. Recent Kings Fund analysis shows that the 2% precept on council tax is a totally inadequate solution to the funding crisis for adult social care. No-one seems to be talking about what the Spending Review means for children’s social care, which wasn’t even mentioned on the Department for Education press release – but it is unlikely to be good news.

The issue now is not whether there should be cuts, but whether the cuts which have to be made are lawful, both in terms of their effect on services and those who use them and the process by which the decisions were made. As Mr Justice Blake said in R (Rahman) v Birmingham City Council (para 46) in relation to the ‘public sector equality duty’ (PSED) found in section 149 of the Equality Act 2010:

Even where the context of decision making is financial resources in a tight budget, that does not excuse compliance with the PSEDs and indeed there is much to be said for the proposition that even in the straightened times the need for clear, well-informed decision making when assessing the impacts on less advantaged members of society is as great, if not greater.

In rather an Alice in Wonderland way, Parliament has continued to impose new duties on local authorities at the same time as central government has taken their funding away to comply with them. However this means that councils need to take the hard decisions that will be made in their budgets for 2016-17 and beyond with a crystal clear understanding of their legal obligations. Although there may come a time where a local authority is unable to set a budget which allows it to meet all its legal duties, I doubt we are there yet.

Councils are currently working up and consulting on their budgets for 2016-17, so now is the time when residents and local groups may want to ask some of these legal questions:

Will the council be able to meet all its ‘specific’ statutory duties owed to individual residents? For example:

  1. The duty to meet all ‘eligible’ needs for disabled adults and their carers under the Care Act 2014
  2. The duty to meet ‘eligible’ needs for disabled children under section 2 of the Chronically Sick and Disabled Persons Act 1970
  3. The duty to provide free suitable home to school travel arrangements for all ‘eligible’ disabled children under section 508B of the Education Act 1996
  4. The duty to secure special education provision in education, health and care plans for disabled children and young people in section 42 of the Children and Families Act 2014
  5. The duty to provide advocacy to disabled people and carers during the care and support assessment and planning process under section 67 of the Care Act 2014.

Will the council be able to meet its ‘sufficiency’ duties to have a sufficient level of particular services to meet local needs? For example:

  1. Childcare, including childcare for disabled children up to the age of 18, under section 6 of the Childcare Act 2006
  2. Short breaks for disabled children under regulation 4 of the Breaks for Carers of Disabled Children Regulations 2011
  3. Education and care services for disabled children, under section 27(2) of the Children and Families Act 2014
  4. Children’s centres, under section 5A of the Childcare Act 2006
  5. Services for disabled adults and their carers, under the ‘market shaping’ duty in section 5 of the Care Act 2014

Has the council had ‘due regard’ to the needs specified in the PSED (see above) – for example the need to advance equality of opportunity for disabled people (children and adults)?

Will the proposed cuts give rise to unlawful discrimination between different groups, contrary either to the Equality Act 2010 or Article 14 of the European Convention on Human Rights?

Has the council had regard to the need to safeguard and promote the welfare of children under section 11 of the Children Act 2004?

Has the council treated children’s best interests as a primary consideration in its decision making, as required by Article 3 of the UN Convention on the Rights of the Child?*

Has there been ‘fair’ consultation on the proposals? In particular (quotes are from the leading consultation case of ex parte Coughlan:

  1. Has consultation taken place at a ‘formative stage’, i.e. sufficiently early in the decision making to influence the outcome?
  2. Have consultees been provided with ‘sufficient reasons for any proposal to permit of intelligent consideration and response’ – i.e. do residents know what cuts are being proposed and why?
  3. Have consultees had ‘adequate time’ for consideration and response?
  4. Once the consultation has finished, has ‘the product of consultation’ been ‘conscientiously taken into account’ in the final decision.

Several of these legal principles – for example consultation, non-discrimination and the PSED – apply equally to NHS bodies such as clinical commissioning groups who may also be contemplating cuts to valued services.

If residents and local groups are not getting answers to these questions, or are unhappy with the answers coming back, then the next step may be to consult a specialist solicitor who can advise on whether there may be a challenge via judicial review. It is essential that any challenge to financial decision making is brought extremely promptly – so advice should be obtained before any final decision is made if possible, or otherwise straight after the decision.

It is also important to bear in mind that not all councils are equal – particularly given the increased focus on councils raising revenue from their own areas. Residents and local groups may want to ask questions about what level of reserves their particular council holds – particularly ‘free’ or unallocated reserves. Although spending reserves is obviously only a short term solution, it may be possible to use reserves to mitigate some of the cuts and help with transition to alternative forms of provision.

It is unlikely that legal challenge alone is going to be sufficient where cuts are proposed – there also needs to be political pressure. There are a number of guides for local groups on how to campaign, including campaigning against cuts or to save services. I really like this one from the Every Disabled Child Matters campaign.

Local politics will still come down to local priorities, although the choices will get harder than ever. In the light of the duties above, the law requires councils to give significant priority to services for children and disabled people. It is hoped that the decision by Hampshire not to cut its short breaks budget for 2016-17 is therefore one that other local authorities will follow to the extent they can.

*We can save detailed arguments about whether and why the UN CRC has to be followed when it is not directly incorporated into English law for any case that goes to court.

The health / social care divide for disabled children – consultation on draft National Framework for continuing care

If the dividing line between local authority and NHS responsibilities for meeting the needs of disabled adults is hard to find, the line for disabled children is practically invisible. In my experience this can cause real problems as agencies argue about who is responsible for meeting severely disabled children’s needs. Alternatively it may result in one agency (usually the local authority) taking on responsibilities which go beyond its legal duties or powers.

Since 2010 we have had a National Framework in place for children and young people’s continuing care. This sets out the point at which the NHS should take lead responsibility for meeting disabled children’s needs and the process by which packages of support should be put together – although troublingly it is merely guidance and has no express legal force.

The Department of Health is currently consulting on a revised draft Framework. The consultation closes next Friday, 23 October 2015 (very precisely, at 11.45pm that day). I would urge everyone who is concerned to see that the needs of the most severely disabled children are properly met to engage with the consultation and comment on the draft. There doesn’t appear to be an Easy Read version of the consultation which is an issue that people may want to take up with the Department.

From my perspective I’m concerned that the draft Framework doesn’t properly address the health / social care dividing line. It seems to assume that in every case there will be a mixed package of care – but some disabled children have care needs which are the sole responsibility of the NHS following the Haringey judgment.

There are several other concerns I have with the draft Framework, not least the focus on children who have Education, Health and Care Plans which will only be a small minority of disabled children, and far from all those who are eligible for continuing care. All these concerns are summarised in my response to the consultation – I’ve pasted sections of this below in case it helps others who are yet to respond.

There are some very good things about the draft Framework – not least the clear statement at para 21 that ‘A decision on the package of continuing care that may be provided should not be budget or finance-led: the primary consideration should be supporting the child or young person’s assessed needs and outcomes’. I hope the Department will make the necessary amendments to the draft Framework and issue a new final Framework as quickly as possible. The current Framework from 2010 is no longer fit for purpose in the light of the massive change in NHS structures and processes since that date.

These are the key parts of my response to the consultation:

4. Does the framework adequately define the scope of children and young people’s continuing care?

No.

The draft Framework begins at para 1, p6 by defining continuing care by reference to cases where a child has ‘complex needs which cannot be met from the health services routinely commissioned by clinical commissioning groups (CCGs) or NHS England’.

The problem with this approach is that it ignores the complex issue of the dividing line between local authority and NHS responsibilities for disabled children with complex needs. The sole focus on whether the child’s needs are such that they cannot be met from universal health services obscures what is often a very important issue, being whether the responsibility for meeting those needs falls to the local authority or the NHS body (normally the CCG).

The current Framework (2010) contains (at Annex D) a summary of the leading case on this issue, being R (T, D and B) v Haringey LBC and Haringey Teaching PCT [2005] EWHC 2235 (Admin). There is guidance in the 2010 Framework that ‘PCTs and local authorities should take into account this piece of case law in their processes for deciding on and putting in place packages of continuing care.’ On p9 of the 2010 Framework, it is said that the Haringey judgment ‘determined that the Coughlan criteria, used to determine whether a local authority or a primary care trust should provide required services to an adult in need of NHS continuing care, applied equally to children.’ However there is no mention of the Haringey judgment in the current draft Framework. This is in my view a surprising and unhelpful omission, as a key function of guidance must be to distil the principles from complex case law into useful advice for professionals.

In my view the key question determined by in the Haringey judgment is the limit of the scope of local authority responsibilities for disabled children. The High Court held (para 68) that it was not permissible for the broad duty in section 17 of the Children Act 1989 to extend to meeting ‘essentially medical needs’. This would turn local authorities into a ‘substitute or additional NHS for children’ which was an ‘impermissibly wide interpretation, creating obligations on a social services authority which are far too broad in the context of other statutory bodies and provisions covering the needs of children’.

As such there is clearly a line across which local authorities must not provide services for disabled children, and the responsibility for providing those services falls solely on the NHS. However it is entirely unclear from the current draft Framework where the Department considers that line to lie. What is said at para 8, p7 is that ‘Where appropriate, continuing care should be part of a wider package of care, agreed and delivered by collaboration between health, education and social care’. Similarly at para 27, p9 it is said that ‘a child…with continuing care needs may require services commissioned by the local authority’.

In my view the Framework needs to give guidance as to when this is appropriate and when the needs should be met solely by the CCG or NHS England. At the very least reference needs to be made to para 68 of the Haringey judgment and the touchstone that the local authority must not act as a ‘substitute or additional NHS for children’. Consideration should be given to including an updated version of the summary of the Haringey judgment in Annex D to the 2010 Framework as an annex to the updated Framework.

5. Does the Framework set out a clear process?

No.

The process for determining eligibility for children’s continuing care remains relatively clear – although serious concerns remain that this process has no statutory force as the Framework will not (as I understand it) be backed by directions.

However what is unclear is the relationship between the Framework and the reformed scheme for meeting the wider needs of children with special educational needs and disabled children introduced by Part 3 of the Children and Families Act 2014. In particular there appears to be an assumption that children who are eligible for continuing care will have an Education, Health and Care (EHC) Plan – see para 2 of the Executive Summary on p5.

The test for an EHC Plan to be issued is that it is ‘it is necessary for special educational provision to be made for a child or young person in accordance with an EHC plan’; section 37(1) CFA 2014. As such it is only those children with significant special education needs who will benefit from a new joined-up plan – no matter how complex their health needs may be.

It is therefore essential that the Framework gives guidance on how the Department anticipates that children’s health, educational and care needs are co-ordinated in cases where the child is eligible for continuing care but not eligible for an EHC Plan. This should include more detailed reference to the duty (mentioned at para 40, p11 of the draft Framework) under section 26 CFA 2014 to have in place joint commissioning arrangements for all disabled children and children with SEN, not just those with EHC plans.

10. Does the framework explain how the Education, Health and Care plan process relates to the continuing care process?

No.

Firstly, it does not deal with the situation where a child has complex health needs and some special educational needs, but not a sufficient level of special educational needs to require an EHC Plan to be in place – see answer to question 5 above.

Secondly, the guidance at paras 44-49, p12 is unclear in several important respects:

  • If it is not of benefit to ‘completely integrate’ the EHC plan assessment and the continuing care assessment given the wildly different timeframes for these processes (para 45), how should the two processes inter-relate?
  • At para 46 it is said that the ‘health assessor’ is responsible for ‘social care and health input to the co-ordinated process’. However for EHC assessments the social care input is the responsibility of the local authority under regulation 6(1)(3) of the SEN and Disability Regulations 2014.
  • The suggestion at para 48 is that because the new SEND arrangements extend up to 25, there will be young people aged 18 or over governed by the adult Continuing Healthcare framework where ‘The local authority may not have any responsibility towards the young person’. However by virtue of the SEND arrangements continuing to apply the local authority will still have responsibility for securing the special educational provision in the EHC Plan, see section 42(2) CFA 2014. It is suggested at para 48 that ‘The local authority would still take the lead in co-ordinating the EHC plan but the services they were ultimately responsible for securing would be negligible’. Is the Department suggesting that the CCG or NHS England would take on the responsibility for securing the special educational provision in those cases? This would seem to me to be a highly surprising conclusion and also plainly wrong.

System change for disabled children – the Local Offer and SEND reforms one year on

We are now one year on from implementation of the SEN and disability reforms introduced by Part 3 of the Children and Families Act 2014 (‘CFA’). To no-one’s surprise the picture on progress is at best mixed. Introducing wholesale system change at a time when local authority budgets have been reduced by 40% over the past five years was never going to be straightforward. As the report on the pathfinder programme was only published this July I imagine we will need to wait a while before any official evidence on progress made under the CFA.

At an individual level I continue to hear utterly depressing accounts of the new Education, Health and Care Plan (‘EHC Plan’) process resulting in absolutely no benefit for children and families. Plans are being issued with no outcomes or outcomes drafted in the blandest terms, social care sections simply saying ‘not known to social care’ and no engagement at all from health. This survey by Special Needs Jungle should help show how widespread are these problems. While there may well be excellent EHC Plans being issued, flagrantly unlawful ones are certainly far from unique.

The Department for Education has just issued new advice to confirm that local authorities are being given longer to complete the transfer process and produce EHC Plans – as introduced by secondary legislation. The main change is that the maximum time for a transfer review for the move from a statement to an EHC Plan has been extended from 14 to 18 weeks. As I suggested this as an urgent action the new government needed to take, I obviously welcome this as a sensible move. However it remains to be seen whether local authorities will now be able to carry out proper EHC assessments and take new advice in every transfer case unless all parties including the parents agree that previous advice is sufficient, as the regulations require; see IPSEA’s summary of the transfer process.

The focus for this post though is one of the key system level reforms introduced by the CFA 2014 – the ‘Local Offer’, as required by section 30 CFA. I’ve written previously about the delays in introducing a lawful Local Offer in many areas. However since that time a number of local areas now have Local Offers which are highly compliant with the statutory requirements and as a result provide a valuable guide to local provision for children, young people and families. Other local areas, shall we say, haven’t done this.

The next question is whether these Local Offers can fulfill their second purpose – ‘To make provision more responsive to local needs and aspirations’ (see the SEND Code of Practice at para 4.2). The mechanism to achieve this is the requirement for local authorities to publish comments on the Local Offer. This requirement is imposed by regulation 56 of the SEN and Disability Regulations 2014.

Regulation 56 imposes a positive duty on local authorities to ‘seek’ comments on its Local Offer from children, young people and parents. Importantly, comments should be sought not just on the Local Offer itself (e.g. is it searchable, is all the information accurate) but also on ‘the content of its local offer, including the quality of the provision that is included and any provision that is not included’. These comments must then be taken into account when the local authority carries out its review of the sufficiency of provision in its area, as required by section 27 CFA.

Why is this particularly relevant now? Because regulation 56 requires that local authorities must publish the comments they receive on their Local Offers ‘at least annually’, on an anonymised basis. Given that Part 3 CFA and the regulations came into force on 1 September 2014, that means every local authority should now have published its first set of Local Offer comments ‘on its website, with the local offer’.

If you are a child, young person or parent who has made a comment on your Local Offer, then now would be the time to check that it is up in lights. If it isn’t, then you may want to highlight to officers and Members that publication is overdue.

If you haven’t yet commented on your Local Offer but have something to say about ‘the quality of the provision that is included and any provision that is not included’, please do comment. It seems to me that effective use of the Local Offer comments facility is the best tool we have to hold local authorities to account in the services and support provided to children, young people and families.

Two important points to note on the Local Offer comment facility. Firstly, it must not be used as a way to make complaints about ‘services provided to a particular individual’. The local authority and NHS complaints process exist for this purpose. Secondly, a local authority is not required to publish any comment which it ‘considers to be vexatious’. The term ‘vexatious’ is not defined in the regulations; under the general legal approach a vexatious comment would be one where the purpose is purely to annoy the local authority and its officers. This is plainly a high bar and means that the vast majority of comments which relate to services generally, including highly negative comments, should be published.

I would be keen to hear about experiences of using the Local Offer comments facility – whether you could find out how to make a comment on your Local Offer easily, whether your local authority sought your comments as the regulations require whether your comment has been published and whether you have seen any difference as a result. Please leave any feedback on these issues below.

Guest post – how SOS Transport Sefton saved their disabled teenagers’ school buses

SOSTransportSefton

This is the first in what I hope will be an occasional series of guest posts on some of the themes and issued covered on this blog. It is written by Joanne Allman with input from Bee Jones from the campaign group SOS Transport Sefton. I saw some of the work of the group on Twitter and thought they captured perfectly what it takes to fight back successfully against the cuts to disability and children’s services. There is much to be impressed by reading Joanne’s account of the campaign, but from my perspective I particularly like how the potential for a legal challenge was integrated into the overall campaigning work. The campaign also shows the importance of engaging at the highest possible level, in this case with the Council Leader.

As we wait for more cuts to to be announced in the new government’s ’emergency’ budget this summer, I hope Joanne’s words and the work of the campaigners in Sefton will help inspire other groups, nationally and locally, who are challenging the consequences of austerity. All comments welcome – as are other suggestions for guest posts.

Birth of a campaign

Campaign group SOS Transport Sefton was born of two parents in a meeting room in a special school in Southport, Merseyside on 23 February 2015.

The meeting had been called by Sefton Council as a part of their public consultation on post-16 Special Educational Needs and/or Disability (SEND) school/college transport. It was attended by just two parents, Janet and myself, who both had 15-year-old children with severe autism at the school. The meeting was not well-publicised, and many parents simply didn’t know about it.

The main focus of both the meeting and the Council’s consultation questionnaire, issued a couple of weeks previously, was their stated intention of promoting ‘independence’ for children with SEND. According to the Council, young people over 16 would be taught to travel independently to school or college through a ‘Travel Training’ scheme.

On the surface, it may all sound perfectly reasonable, even laudable….until you wake up from the seductive daydream of teenagers happily waiting at bus stops, and remember that our special school caters for severely disabled children. Paraplegic children in wheelchairs. Children with complex medical conditions. Children who are tube-fed. Children, like my own son, with profound learning difficulties who need constant supervision. What are the alternatives for these children, we asked. The reply was that there was none. Parents would have to take their children to and from school each day.

Again, this may not seem such a big deal…until you appreciate that special schools may well be many miles from the family home. Parents without a car might have long distances to travel each day by public transport, in some cases escorting a young person in a wheelchair. Some parents told us they would have to give up their jobs in order to take their children to school, which would cause them hardship. And these are families already under pressure, be it financial or stress or health related.

These issues gave birth to SOS Transport Sefton…although neither Janet nor I realised it at the time. We had a quick chat after the meeting and decided to write a letter to all the other parents to inform them of the impending transport cuts.

That was 23 February 2015….BUT on 23 April, exactly two months later, the Council stated publicly and unequivocally that they would NOT remove post-16 transport to special schools or colleges in Sefton.

So how was this achieved? These are the steps we took to persuade the Council to change its mind. Bear in mind that we spent virtually no money on this campaign.

What we did

We formed a committee

It’s always a good idea to team up with like-minded campaigners who share your goal. Janet and I were lucky enough to be joined by two very determined individuals, Bee and Sarah, also parents of teenagers with autism. We all brought different skills, strengths and experience to the group, and gave each other much-needed moral support.

We mounted a legal challenge

Bee had already approached a Public Law solicitor before joining our group. As it happened, the Council withdrew their proposal to remove transport before the case was brought, but the threat of legal action may have had a bearing on their decision.

We promoted our campaign on social media

We set up a Facebook page and a Twitter feed, to raise awareness of the Council’s proposals, and to give updates on our campaign. This proved to be enormously effective. We soon attracted over 200 followers on Twitter and garnered a similar number of ‘likes’ on Facebook. Social media were a crucial factor in the success of some of our later initiatives.

We launched a petition

We started our petition on 4 March, and gathered signatures both on paper and on-line. By the close of the public consultation period on the 30 March, in less than four weeks, 2,779 people had signed on paper and 2,559 on-line, totalling 5,338. This meant that our petition was eligible to be presented at a full Council meeting, because the number of signatures exceeded the threshold of 2,750.

We developed good relations with friendly local journalists

There was widespread coverage of our campaign in both print and on-line versions of local newspapers, for example here and here.

We organised a demonstration march

On 30 March, we held a peaceful demonstration march in Bootle, where Sefton Council is based, to hand in our petition. Around 35 people took part, mostly parents, with several children in wheelchairs who had been given leave of absence by one of the special schools in support of our cause. At Bootle Town Hall, we discussed the issue with Peter Dowd, Council Leader and Labour Party Parliamentary candidate for Bootle. 

We got political

….and we got lucky. When the Bootle based parent protesters got home after the demonstration, they found Labour’s General Election leaflet on their doormats. It showed Peter Dowd at Bootle Town Hall, where we had just left him, with a list of five pledges, including these gems:

  • Work with schools and colleges to give our young people the best start in life
  • Fight to get a fairer deal for the most vulnerable
  • Demand better environmental standards and protect our precious green spaces

This galvanised the four of us into action, and took our campaign into the political arena. Over the Easter weekend, we challenged Dowd on Twitter about the dissonance between his election pledges and his stance on disability transport as Council Leader. A ‘Twitter storm’ ensued, after which Dowd blocked all our Twitter accounts! We contacted the press, and the story appeared in the local newspapers. Details of the Twitter row can be found here and here.

We published an Open Letter on our new campaign blog

We resolved to continue to highlight the disparity between Dowd’s pledges and his actions as Council Leader by writing an open letter from the standpoint of a parent of a disabled teenager. We published the letter on a new campaign blog, runawaybus.

We promoted our blog on social media, and the day it was launched, it attracted 280 visitors and 395 views!

We sent a parody Consultation Questionnaire to every councillor in the borough

The questionnaire issued by the Council as part of their public consultation was not fit for purpose. Couched in language more reminiscent of a teenage magazine quiz than a serious survey, it appeared to have been designed to dupe the respondent into giving the answers that the Council wanted.

We hit on the idea of giving the Council a taste of its own medicine by writing a parody consultation questionnaire and emailing it to 70 Sefton councillors and council officers! The parody version was written in the same style as the offending original, and was humorous, but hard-hitting.

We issued a press release

We collected over 100 email addresses for national newspapers and other news outlets, and on 20 April we issued a press release. Later, we were contacted by BBC Radio Merseyside and the next day…..

We got on the radio

Bee was interviewed for several minutes on BBC Radio Merseyside, and put our case very persuasively. A clip of a pre-recorded interview with Sarah was also broadcast. Our story was featured as first or second item in every news bulletin that day, and the radio station also invited a spokesperson from the National Autistic Society to discuss it.

We wrapped it up at meetings with the Council

On the day of the radio broadcast we had a private meeting with Peter Dowd and two Council officers. They gave us a categorical assurance that there would be no cuts to disabled transport to any of Sefton’s special schools or colleges.

On Thursday 23 April we presented our petition at a full Council meeting at Southport Town Hall. In response, Leader of the Council Peter Dowd gave an assurance, on the record, that there would be no cuts to transport to any special schools or colleges in Sefton. He also acknowledged the flaws in the consultation process which we had highlighted, and invited us to assist in efforts to improve the way future consultations are carried out.

So, on St George’s Day, two months to the day from the birth of our campaign, the dragon of cuts to transport to specialist provision was finally slain, and the worry caused by the threat of removal of this vital service laid to rest.

A few days later, we issued the following public statement.

Lessons we’ve learned

We’ve learned a lot over the past few weeks, and hope that some of our ‘top tips’ may help others embarking on campaigns against injustice:

  • Know that if your sense of justice has been offended, there will be others who share your outrage and anger. In the twenty-first century, we have an enormous advantage over campaigners from previous generations because the internet gives us the tools to link up very quickly with like-minded people. It’s quite straightforward to set up a Facebook page, a Twitter feed, even an on-line petition; yet these simple steps can be very empowering because they bring people together and provide a focal point for opposition.
  • Don’t try to run the campaign on your own. Find a few other people to share the decision-making, organisation and work. You’ll probably come up against vested interests, underhand tactics and intimidation, and you’ll need moral as well as practical support.
  • Don’t under-estimate your individual strengths; you may have experience of writing or public speaking, perhaps a social media presence or other useful attributes. When these resources are pooled, the resulting synergy can make the difference between success and failure of your campaign.
  • Publicity is the oxygen your campaign needs to flourish and succeed. Make contact with journalists via social media, where it might be possible to develop an informal, friendly relationship. Maximum coverage for your story in the local press will both attract supporters and put pressure on the authorities you’re campaigning against. Consider issuing a press release to reach a wider audience.
  • Take your chances and be bold. When opportunities present themselves, seize them. In our case, the upcoming General Election made the bad publicity we created for a local candidate decidedly inconvenient. You can’t guarantee lucky breaks, but if a gift horse does happen to wander across your path, jump on and ride!
  • Have fun! The issues you are facing may well be very serious, but confronting them and taking back some control over the situation will probably be therapeutic and make you feel a whole lot better. You may discover skills you never knew you had, or learn new ones, grow in confidence and find new friends. A sense of common purpose can break down barriers and forge bonds between people who may not otherwise have had the opportunity to get to know each other. Even if your campaign does not achieve what you hope it will, you may find you reap other unforeseen benefits and rewards. Set your sights on your destination, but don’t forget to enjoy the journey.

Joanne Allman
With input from Bee Jones

SOS Transport Sefton

Twitter: @SOS_Sefton

Email: sostransportsefton at gmail dot com

Five legal priorities for disabled children and the new government

With the Conservatives winning a majority in last week’s General Election it would seem there is unlikely to be any radical change in law or policy affecting disabled children from the last Government. The focus must surely be delivery of the reforms introduced by the Children and Families Act 2014. With that in mind here are five suggestions for urgent action by the new Minister (most likely the old Minister, Edward Timpson MP) and his colleagues in Health:

  1. Extend the timeframe for transfer from statements and Learning Difficulty Assessments (LDAs) to Education, Health and Care Plans (EHC Plans). It was never going to be possible to transfer all children and young people with statements / LDAs over to EHC Plans by April 2018 unless the transfer process was going to be a sham. And in many areas that seems to be exactly what has happened – no proper transfer review, simply a rebadging of statements as Plans often led by the school with minimal Local Authority input. The Minister should now consult on a sensible extension of the timetable for transfer, predicated on every Local Authority ensuring that a proper transfer review takes place in every case, involving social care and health as required.
  2. Extend the timeframe for carrying out EHC assessments. I anticipate this one may be controversial – but it seems to me very difficult for a local authority to ensure that in every case a proper EHC assessment is carried out with input from social care and health and for the process to be completed within 20 weeks. In my view the Minister should consult widely on whether a slightly longer timeframe should be allowed, again with an absolute expectation that the assessment process will be carried out properly in every case. It seems to me that a proper assessment leading to a lawful Plan is more important than a quick assessment and ropey Plan – but I understand that families may think speed and quality are equally important.
  3. Sort out the confusion in relation to social care assessments. For disabled children who do not qualify for an EHC assessment, the key assessment duty remains section 17 of the Children Act 1989. However the courts have had to read the duty to assess into the Children Act, and there is nothing in section 17 which specifies the form or type of assessment required. Answers to questions like who has to carry out the assessment, what issues it must cover and the timescale are left to guidance, currently Working Together to Safeguard Children. However the High Court in R (L and P) v Warwickshire has held that not all disabled children are entitled to a social work assessment under Working Together. Yet Working Together gives no steer as to which children are entitled to a ‘full’ assessment, and which children can be assessed via ‘Early Help’. It would greatly assist if the Minister were to consult on guidance specific to disabled children which would clarify this critical point.
  4. Make the Local Offer real for social care. The Local Offer under section 30 of the Children and Families Act 2014 has the potential to create a baseline entitlement for all disabled children and families, but only if there are actually services available for families to access under it. One important step which could be taken by the Minister to help achieve this would be to issue guidance requiring every Local Authority to have a minimum short break entitlement with no or very minimal assessment and eligibility criteria. This would obviously be additional to the support available to children who hit eligibility criteria for support under the CSDPA 1970. Guidance currently describes this kind of offer of unassessed short breaks as good practice, but if it were to be mandatory then the Local Offer in social care would start to have some real value.
  5. Reissue the National Framework for Children and Young People’s Continuing Care. It is vital that disabled children with complex health needs get a package of care and support that is properly co-ordinated and centred on their needs in their family context. The National Framework is supposed to achieve this, but it is badly out of date and does not reflect the reforms introduced by the Health and Social Care Act 2012. For example, the Framework still refers to ‘Primary Care Trusts’ which have been abolished and replaced by Clinical Commissioning Groups. It also does not reflect the vital role of NHS England in commissioning packages of care for children with the most complex needs. The National Framework therefore needs to be reissued urgently, and when this is done its status must be clarified; CCGs and Local Authorities need to know whether they are expected to follow it or the question will be left to the courts to decide.

I am not suggesting that any of these measures, either individually or taken together, will lead to the kind of radical transformation in education, care and support that disabled children and their families need and deserve. However they seem to me to be the kind of practical steps that the Minister can take to help the system introduced last year work more effectively.

Comments on these ideas and other ideas for priority action most welcome below.

Direct payments – don’t get fooled by personalisation

I’m sceptical about personalisation. The principle of disabled people and families having choice and control over care arrangements is unarguably right. However in practice I see personalisation delivering two bad things. Firstly, personalised approaches are used to transfer risk and responsibility for care from the state to disabled people and their carers. See the brilliantly titled paper by Prof Luke Clements, ‘Individual Budgets and irrational exuberance’. As Mark Neary put it yesterday in his alternative social care dictionary; ‘Personalisation – Phew, got rid of another annoying statutory duty.’ By way of example, people who use direct payments to employ their own Personal Assistants must make arrangements for tax, National Insurance contributions and statutory sick and maternity pay – as they become employers. Is that something most people would want to take on?

Secondly, personalisation is used as a cover for cuts. It seems to be far easier for local authorities to tell people their personal budget is being reduced by 20% than to tell them that the service they were receiving on five days a week is now only to be provided on four. It’s even easier to change the way your Resource Allocation System generates an ‘indicative’ budget (more on RASes below) to reduce this figure in a way that disabled people and families will struggle to understand. None of this is lawful if the service / funding is being provided in discharge of the CSDPA duty, because the CSPDA requires eligible needs to be met in full – but that doesn’t stop it happening across the country.

Saying all this though, I recognise that for some disabled people and families with disabled children the right to a direct payment has led to a massive improvement in their lives. Despite all the rhetoric of personal budgets, to my mind it is direct payments which still matter – they are the mechanism by which money actually moves from the state to disabled people and families. In the best areas, direct payments have killed the culture of the one-size-fits-all service which previously existed and led to real innovation in the services available to disabled children and adults. In the best areas.

Personalisation is often seen as a law-free zone. In Control once published a paper with the (in my view) shocking title ‘Don’t be fooled by the law. However unsurprisingly the allocation of state resources to individuals through direct payments is in fact covered by a significant amount of law and guidance. I’ve already written about the new SEN direct payments under the Children and Families Act 2014. The problem with these is that, in short, the local authority is not allowed to make an SEN direct payment if to do so would lead to additional costs. In health, there is a new right to a personal health budget from 1 October 2014 for children and adults who are eligible for NHS continuing healthcare – but as far as I can tell it is up to the NHS in every case whether to make a direct payment. See para 7.2 of this guidance on the right to have a personal health budget which suggests health direct payments can be refused if they are ‘impracticable or inappropriate’. The detailed guidance on health direct payments confirms that health direct payments can be made when they are appropriate for the individual and represent value for money – but this does not mean that in any case they must be made.

So the right to a direct payment is most real in social care – and works in essentially the same way for disabled children and disabled adults. Links to the law follow – with the usual health warning that some may not have been updated with relevant amendments. The links should at least give the basic statutory scheme.

The key statutory provision (until next April at least when the Care Act 2014 comes into force for disabled adults) is section 57 of the Health and Social Care Act 2001, which requires that direct payments must meet the ‘reasonable cost of securing’ the necessary service. The duty to make direct payments when services are being provided to disabled children stems from section 17A of the Children Act 1989. Adults who lack capacity in relation to relevant decisions about direct payments now have a right to them under section 146 of the Health and Social Care Act 2008.

Under the Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations 2009, social care direct payments essentially must be offered in any case where the disabled person or family is capable of managing them, either alone or with available help. The way in which social care direct payments should operate is governed by statutory guidance with the snappy title Guidance on direct payments for community care, services for carers and children’s services: England 2009.

From this statutory scheme we can construct some answers to questions that might arise where local authorities neglect the fact that the right to direct payments is carefully defined in law. Here are some of the questions that I have been hearing recently about direct payments, and my general answers – although of course, any individual case needs careful fact-specific advice:

  1. Do I have to accept a direct payment? No. Direct payments are a right in social care (absent exceptional circumstances) but they are also a choice. If the disabled person or family don’t want to deal with a direct payment, they are entitled to say that they would prefer a service to be provided to meet the eligible needs. Of course, they will then need to negotiate with the local authority as to what service is to be offered – and providing it meets the need, the local authority is not obliged to fund a more expensive service when a cheaper one is available. However no disabled person or family should ever be forced to accept a direct payment. See the guidance at para 15; ‘A person does not have to accept direct payments; if they wish, they can choose instead to receive services that are provided or arranged by the
    council.’ The guidance emphasises the need for support services and advocacy so that the choice as to whether to have a direct payment is a fair one in every case.
  2. How should the amount of direct payment be set? Direct payments should be set in each case at the amount that the local authority considers will meet the reasonable cost of securing the necessary services for that person. That assessment by the local authority has to be informed by the evidence, including the assessment and the service plan, setting out what services the authority considers would be sufficient to meet the eligible needs. In order to comply with the statutory duty the local authority has to assess the disabled person’s needs, determine which are eligible for support, decide which services would be sufficient to meet those needs and then work out what that package of services would cost. That is the sum of money which should be offered as a direct payment – although of course what the disabled person or family choose to buy with that money is (within reason) up to them (see below). See the guidance at para 111 onwards for more detail about how the amount of direct payments should be set. Importantly the guidance emphasises at para 114 that ‘councils should include associated costs that are necessarily incurred in securing provision, without which the service could not be provided or could not lawfully be provided’ – for example recruitment costs, National Insurance or VAT. If you’re going to take on the state’s employment responsibilities it’s reassuring to know the state is obliged to fund them.
  3. Can a local authority have a fixed direct payment rate with no exceptions? No. Local authorities can’t ever operate blanket policies (unless the policy just reflects a legal rule) – they must always at least consider exceptional cases. However here we have a clear statutory duty which states that the amount of direct payment must mirror the cost of services to meet the individual disabled person’s needs. So a local authority could not have a fixed hourly rate of (say) 9.50 per hour for a carer – because some disabled people may need a more specialist service with greater cost. In my view it is doubtful whether even a typical rate with more allowed in exceptional cases is lawful, because this may not allow the case-specific focus which the law requires.
  4. Can a local authority use its RAS to determine the amount of money offered as a direct payment? No. Prior to the Supreme Court’s judgment in KM v Cambridgeshire CC, in my experience local authorities were routinely using their Resource Allocation Scheme (RAS) to determine the amount to be paid by way of a direct payment in any particular case. A RAS, put shortly, is a mechanism by which needs can be translated into sums of money using the rough cost of meeting similar needs in the area. What this skips out is the essential step of working how much it would cost to provide services to meet the particular needs of the individual disabled person. This is why the Supreme Court in KM made clear that RASes can only be used to create a ‘starting point’ or ‘ballpark figure’ – more formally, an ‘indicative allocation’ at the start of the process. So the RAS could generate a sum of say 120.00 – but the essential next step is to develop a support plan to see how much it will actually cost to meet the disabled person’s needs and then (inevitably) increase the sum allocated to comply with the legal duty. See a detailed critique of the use of RASes by Prof Luke Clements and Lucy Series for more reasons why their use is problematic – but confined to the role prescribed by the Supreme Court in KM their use is lawful.
  5. Can a local authority refuse to allow direct payments to be spent on anything other than personal assistants? No. The whole point of direct payments is to allow flexibility in the way in which care is provided and arranged. As the statutory guidance says ‘a direct payment gives the service user flexibility to look beyond ‘off-the-peg’ service solutions at options that may include employment, education and leisure activities as well as personal assistance to meet their assessed needs.’ It is totally unacceptable in 2014, when direct payments have been around since 1996, that local authorities still seem to be asserting unlawful limits on direct payment expenditure. See also para 14 of the guidance; ‘Direct payments do not have to be used in the same way as if support was being provided directly by the council. Indeed, they are intended to give the individual the maximum degree of choice and control over how their eligible
    needs are met.’ Finally see para 90; ‘In discussions with individuals about how their needs might be met through
    direct payments, councils should be prepared to be open to new ideas and be as flexible as possible’ and para 92, ‘Conditions [on the use of direct payments] should be proportionate and no more extensive, in terms or number, than is reasonably necessary.’ So why are these rigid rules about what direct payments can be spent on still in place?
  6. Does a direct payment have to be enough to cover things like transport and activity costs? Generally, yes. To repeat – the amount of direct payment should meet the reasonable cost of securing the necessary service to meet the disabled person’s needs. So if the service is intended to meet a disabled person’s needs in relation to social isolation, the ‘necessary cost’ of securing this service will include the cost of getting there and the cost of securing admission. Both transport and activity costs are covered by the CSDPA duty and so must be met where this is necessary to meet the person’s needs. The guidance helpfully emphasises that ‘Some people might use their direct payments to facilitate better social inclusion, others to aid their general well-being, for example through fitness classes or arts and cultural activities.’ The only situation where a direct payment need not cover these costs is if the local authority can reasonably conclude that it is not necessary for it to provide these services because they can be met another way. However that would need to be a rational decision based on the evidence in a particular case. For example, a blanket policy that transport costs will not be met via a direct payment because they can be paid for through state benefits will be unlawful.
  7. Can the local authority refuse to allow direct payments to be spent on a particular service on grounds of risk? Yes – but only if there has been careful assessment in the individual case. As the guidance emphasises at para 97; ‘Support planning involves allowing people to make their own informed decisions – including decisions about risk. Councils have a responsibility to ensure that, wherever possible, the choices made by the individual are respected and supported. The benefits of increased autonomy and social inclusion may have to be weighed against the risks associated with particular choices.’ This reflects the requirement to respect disabled people’s rights to private life, dignity and autonomy under Article 8 ECHR.
  8. Does there still need to be a care plan when support is being provided via a direct payment? Yes. See the guidance at para 98; ‘Councils are reminded that there should always be a care plan, a written copy of which should be given to the individual. This advice applies equally where people direct their own support or where the council directly
    provides or arranges services.’ There is an obvious reason why this is so important – if there is not a written plan setting out which services the local authority considers necessary to meet the person’s needs, how can anyone tell whether the amount of the direct payment is sufficient?

I hope this myth-busting exercise is some help. If personalisation is going to have benefits for disabled people and families as a policy approach it needs to be operated in accordance with the law. Disabled people and families must not get fooled by personalisation. Whether eligible needs are met through services or money the law requires that they are met properly and in full.

Please post any comments and general questions about the law on direct payments below and I will address those which are not case specific. For case specific issues I suggest contacting a specialist solicitor. While low level disputes around direct payments should be resolved through the local authority complaints process, serious disputes may require an application for judicial review.

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.

Solicitors with expertise in disability and SEN cases

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. All these firms offer legal aid and will be able to advise disabled people and families about eligibility for public funding. All can help with judicial review cases and most advise and represent people in the First-tier 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 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. However from what I know, I would be confident that all these firms will offer a good quality service from staff who are committed to disability rights. 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.

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.

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

Solicitors with expertise in SEN and disability cases (as at 13 September 2014)

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.

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