House of Commons Select Committee Inquiry into CAMHS: your evidence

Back in March, we asked for your experiences so that we could compile a report for the House of Commons' Select Committee rinquiry in to CAMHS.

We are now pleased to confirm that the evidence from this inquiry has been published and we are able to release our report.

The evidence in the report relates to the experiences of disabled children using the service. Many families with disabled children have cause to access CAMHS. Disappointingly, our evidence shows that, too often, their experiences are profoundly negative.

The evidence we have gathered demonstrates that, while some parents report positive experiences, overwhelming experiences were negative. The most common problems include: delay; lack of expertise in disability; the quality of the service; funding, management and administration; and CAMHS’ liaison with other agencies and bodies.

We are very grateful to all those who contributed to our report which we were able to share with all contributees for their views before the paper was submitted. We are also grateful to those professionals who contributed.

New ASC Resource Base planned for Wiltshire School: how should we plan for genuine inclusion?

The ERA notes with interest Wiltshire Council’s proposal to establish a new ‘Resource Base’ at a school in Salisbury for children with Autistic Spectrum Conditions (ASC). Read the proposal here.

The Council says the proposal is advanced as “a central part of the drive to develop a more inclusive education for pupils with SEN”. 

We were very disappointed, therefore, to note the apparent absence of detailed information to support this consultation. Planning for the genuine inclusion of pupils with ASC is a complex matter requiring advice, research and the widest possible consultation. There is far more to the idea of 'inclusion' than the simple physical presence of disabled children in a mainstream environment.

We have written to the Council for more information: information which we think should be available as a fundamental part of any genuine consultation on issues as important as this. This is an opportunity for the community to discuss these issues openly and the needs and rights of children with autism should be a paramount consideration in such a process.

Read our letter here.

POSTSCRIPT: Disappointingly, Wiltshire Council has failed to respond to our letter. This means this information has not been in the public domain during the consultation period. It also means that they have failed to comply with the Freedom of Information Act 2000.

This was a genuine opportunity to engage the community on the important issue of inclusion. The failure to respond is even more disappointing in view of the fact that Wiltshire Council is one of the Department for Education's 'Pathfinder Champions' under the proposed Children and Families reforms. Sadly, we are not aware of any engagement with the local autism community despite the fact that these plans may engage the Public Sector Equality Duty.

Wiltshire Council responds

Wiltshire Council failed to respond to our letter within the statutory deadline established by the Freedom of Information Act 2000 despite the fact that we had contacted their Cabinet member for Children's Services about this matter. 

A month after the statutory deadline, we received this response . 

It is hard to follow the Council's responses in this letter as they have cut and pasted their answers below our questions, removing the numbering in our letter as they go. However, the following significant issues stand out:

1. The Council contends it possesses absolutely no documentation regarding the establishment of this proposed ASC base, despite the fact that the proposal has been costed and put out to public consultation. If this is correct, we find this response alarming. In terms of good governance, we would expect to see significant documentary evidence relating to the proposal, e.g. an outline proposal, a record of discussion of various options and plans for consultation, data supporting the option chosen, letters between the Council and the Governing Body of Greentrees Primary School, detailed plans relating to the proposed venture for elected members etc. The absence of any documents at all is deeply concerning in terms of accountability and transparency.

2. There has, seemingly, been no consultation with children/young people with autism, parents of children with autism or any autism groups in Wiltshire. This is very disappointing and we can only say, again, that we feel this may be non-compliant with the Public Sector Equality Duty set out in the Equality Act 2010. Indeed, in light of the Council's contention that it has absolutely no evidence connected to its decision to create a base at this school, we cannot see how they can prove they have discharged the duty. The Equality Act 2010 requires that 'due regard' be given to the objectives of the Act (i.e. the need to eliminate discrimination, to advance equality of opportunity and to foster good relations between people who share the relevant characteristic and those who don’t) in all the decision-making of public bodies. The so-called 'Brown Principles' established by the case of R (Brown) v Secretary of State for Work & Pensions [2008] EWHC 3158 (Admin) confirmed what due regard means for public bodies making decisions. The case held, amongst other things, that it is good practice for public authorities to keep an adequate record showing that they had actually considered their  equality duties and pondered relevant questions. The Court noted that appropriate record-keeping encourages transparency and will discipline those carrying out the relevant function to undertake their disability equality duties conscientiously.  If records are not kept, it will be difficult, evidentially, for a public authority to persuade a court that it has fulfilled its general equality duty. 

3. Disappointingly, it seems clear that, at present, the Council can provide no evidence of what form it expects 'inclusion' to take or what the operational role of the base will be on a day to day basis e.g. the profile of the prospective pupils, the support available, the therapeutic interventions on offer, the training required for the mainstream school. We would have expected a very clear plan to be available.

4. The Council does not appear to have gathered any written advice or evidence from professionals with expertise in autism about the location of and/or proposal for this ASC base. It appears to refer only to anecdotal evidence about the school 'chosen'. This proposal concerns public money and it relates to very vulnerable pupils. We would have expected the Council to set out a clear vision about the base and to invite interested schools to tender for it by submitting evidence on how they can supply the services required in an open and fair competition. Sadly, and without available evidence to the contrary, it appears that the base may simply have been the 'price' this school was asked to pay for wishing to extend its mainstream classes. 

Is this how 'inclusion' should work? We believe genuine inclusion requires careful thought, planning, consultation and close working with experts (including parents and children).

We will be writing back to Wiltshire Council urging them to fulfil their duties under the Equality Act and to set out a clear proposal for this base. We will also question the absence of documentation. 

Survey Results: Satisfaction of Parents in SEND Pathfinder Authorities March 2014

Introduction

The ERA conducted this short, basic survey via Survey Monkey.  We advertised it via our Twitter account and personal Facebook accounts for 4 weeks between February 2014 and March 2014, which led to 89 parents responding. 

We are a small organisation without financial resources and our aim, in the absence of any organisation undertaking independent sampling or sampling beyond Parent Carer Forums (PCF), was simply to test the water and obtain a snapshot of views. We do not make any claims to the statistical significance of the views collected, however, we note the substantial sums which have been offered to those piloting reforms i.e. local authorities and strategic partners, and we would strongly urge further efforts to include parents and take their views.

Here are the results: 

1. Do you live in a SEND Pathfinder area?

Yes:                54.55%

No:                 27.27%

Don’t know:    18.18%

It is concerning that almost one in five parents did not know whether they lived in a pathfinder authority. This included parents who did in fact live in such an area.

2. If yes, please state the name of your Pathfinder area?

The following table identifies all the 31 SEND pathfinder authorities. This includes SE7, which is a group of the 7 LAs identified by *.  (C) = pathfinder champion. 

SE7 was used once to identify where a particular parent lived so is not known which specific LA this relates to.

Coloured cells show the LAs specified by respondents. Note that 3 LAs were specified by respondents which aren’t pathfinders but we felt it was important to provide these as ALL parents will be affected by the reform.

      

(C) Bexley	(C) Brighton & Hove*	(C) Bromley	(C) Calderdale
Cornwall	Darlington	Devon	Gateshead
Greenwich	(C) Hampshire*	(C) Hartlepool	Hertfordshire
Isles of Scilly	(C) Kent*	(C) Leicester City	Lewisham
(C) Manchester	(C) Medway*	(C) N.Yorks	Northamptonshire
Nottinghamshire	Oldham	Rochdale	(C) Solihull
(C) Southampton	(C) Surrey*	(C) Sussex (E)*	(C) Sussex (W)*
(C) Trafford	(C) Wigan	(C) Wiltshire	*SE7
Although not pathfinder LAs, these were identified by respondents:		Buckinghamshire, Durham, Swindon

3. Does your child have SEN and/or disabilities?

Yes:   100%

4. Have your views been sought by your Local Authority or the Department for Education or any other organisation about the Children and Families Bill (SEN reforms)?

Yes:    47.73%
No:   52.27%

We could be excused for assuming that all the parents whose views have been sought live in pathfinder authorities, and that non-pathfinder areas aren’t necessarily going to be pro-active in seeking the views of their parents. This is not necessarily the case.

Of the parents whose views have been sought, only 57.57% live in pathfinder areas.

Of the parents whose views haven’t been sought, 42.22% live in pathfinder areas.

Consultation appears to be a postcode lottery.

5. How have your views been sought?

Through a Parent Carer Forum (PCF):            72.50%
Through membership of an organisation:         15.00%
Through a survey:                                           20%

The Department for Education has provided increased funding for PCF’s to facilitate parental involvement in shaping/piloting the reforms locally. However, although the majority of parents who completed the survey used a PCF to give their views about the reforms, only 69% of those parents live in a pathfinder LA, which suggests being a member of a PCF and living in a pathfinder authority doesn’t necessarily mean communication between LAs and parents is inevitable.

We also believe that reliance should not be placed on a single method of communication. Parents may choose not to be a member of a PCF.  Parents should be consulted and kept informed about SEND services affecting their children and young people, whether they have access to a PCF or not.

6. If your views have been sought, do you feel you have been given sufficient opportunity to express them?

     
  Yes:                    30.51%
No:                      61.02%
Don’t know:         8.47%

It is of concern that, even where consulted, parents did not feel they had been given sufficient opportunity to express their views.  If parents are to be valued for their expertise and knowledge about SEND in relation to their own child’s needs, and they want to be involved, then we need more than a tick the box exercise. Meaningful discussions where parents are treated as equal partners are required.

7. Do you feel you have received sufficient information about the progress and implementation of the reforms?

Yes:                  18.39%
No:                   81.61%
Don’t know:     1.15%

An overwhelming number of parents felt that they did not have sufficient information. This is unacceptable when substantial sums of funding have been provided to facilitate the reform process which was supposed to make SEN matters less, not more complex.

8. Do you feel the Children and Families Bill will:

Make a positive difference:          13.79%
Make a negative difference:         59.77%
Make no difference at all:             26.44%

It is of considerable concern that only one in eight parents responding feel that the reforms will make a positive difference to their lives. Millions have been spent implementing  these reforms and we  have persistently asked all those organisations who have welcomed the new Act to set out clearly how it is going to make a difference to children's lives. We have yet to see anyone respond.

This might account for the level of negativity in the responses or it may be that parents do not believe what they are being told about the ‘brave new world’ of co-production.

9. Please share any other views about the reforms and the reform process

Parents 's views are really important so we have attached an Appendix containing all the feedback received.

Out of 49 responses to this question, very few were positive about the reforms. The others highlight the concerns we have previously raised about the Children and Families Act. 

Conclusion

“The non-uniformity has turned provision into a postcode lottery. The draft SEN Code of Practice is not fit for purpose. School Action and School Action Plus children are not provided for. Time scales are not set and the right of appeal is not clear. It's a travesty and seems weighted in favour of Local and Health authorities and against parents and their SEN children as if or lives aren't hard enough already” 

From the responses, it is clear that parents generally do not feel like they have been given the opportunity to participate in shaping the reforms.  Whilst parents may, on occasion, have been asked for their views, the engagement process seems to have stopped there.  There is little evidence that their views have been acted upon.

This is unacceptable and it highlights the need for evidence to support reform and for meaningful consultation with parents, children and young people to ensure its legitimacy. Children and young people should be the heart of all decision making about important, life changing reforms like this but they have been left without a voice.   

Sadly, some of the large, very well-funded charities who are meant to be representing families have made little genuine effort to really listen to their views. They have, instead, implemented the Government reforms and have not been willing (or able) to justify their actions or explain their views on the changes.

Further, engaging solely with Parent Carer Forums is not the cure for parents who feel they don’t have a voice.  In some cases, our evidence indicates that being in a PCF means your individual views haven’t been sought as engagement takes place only with the PCF. We think this needs to be looked at very closely.  

In the draft Code of Practice, there is a sizeable paragraph (3.4) relating to PCFs, which starts by saying:

“Parents and young people must be involved directly in discussions and decisions about the support available to them individually and more strategically, particularly through the development of the local offer.”

It then goes on to describe what effective parent participation looks like:

“Effective parent carer participation happens when: 

the engagement and participation of parent carers in the local authority is valued, planned and resourced"

We see no evidence of this.

The Children and Families Act: "Better outcomes for children"? Where's the evidence?

The Children and Families Bill has become an Act

We have been vocal in raising our concerns about the Bill (see our blog post demanding a moratorium for example). 

We have tried to ask questions about the absence of evidence supporting these reforms and we have persistently requested explanations from those organisations who have been leading the implementation of the reforms on the part of the Government.

We have been deeply disappointed at the lack of response. It appears that many organisations have been unable and/or unwilling to justify their whole-hearted embrace of these reforms. Similarly, there has been precious little in the way of concrete explanation to support the argument that these reforms will improve the lives of disabled children and their families. 

In terms of evidence, there have been multiple Pathfinder pilots but they are not genuine pilot studies as no one has waited for the evidence to be gathered from them before making decisions about what works and what doesn't. Further, considerable reliance has been placed by some organisations on the seemingly welcoming jargon and rhetoric (e.g. the use of terms like 'co-production') which accompanied the Bill when much of this rhetoric has not been translated into binding obligations on the face of the legislation. We already know that LAs do not follow the current law and we cannot see how has the Government improved the rights of children with this new legislation.

The result of this legislative process is chaos. A very brief recent report on BBC South (starts from around 10.56), scratches the surface of this. A Council leader, for example, describes them as "complicated reforms" which are unlikely to "bed in quickly". Compare this to the promise in the Green Paper of a more straightforward, streamlined system which will be easier for parents to navigate.

This a massive problem because making systems more complex, reduces their transparency. It also makes it much harder for parents to know and assert their rights on behalf of (and with) their children. If parents cannot navigate the system, how does this empower them or improve the protection of disabled children's rights?

'Independent Supporters' are not the answer to this as their role is not to challenge local authority decisions. However, the fact that the Government has had to promise £30 million for the creation of 'Independent Supporters' to support local authorities (LAs) in the switch to Education, Health and Care Plans (EHCPs) is testament to the complexity of the system and, no doubt, the panic in local government. These 'supporters' may have little to do with 'championing' parents' cases as they appear to be little more than an information source - see our latest blog post on Independent Supporters'. Of course, whose information is being distributed and for what purpose are questions yet to be answered.

Why the applause?

Yet, despite this, there were organisations who instantly responded to the Bill's passing with a twitter 'yipee'. Why? We thought we would ask them to explain their support. Every time we did, the response was almost universal silence.

The Council for Disabled Children (CDC), who won the commercial tender to become the Department for Education's 'strategic partner' in these reforms, similarly applauded the Bill's passing. The CDC is the umbrella body for the disabled children’s sector in England. It seeks to represent over 120 organisations: details can be found here.

Its Director said:

“The Children’s (sic) and Families Act marks an important step to getting better outcomes for disabled children and young people and (sic) with special educational needs."

We believe much more must be done by those who have supported this legislation to explain the statements they make about its positive potential.

Consequently, we have written to the Council for Disabled Children with a simple question:

"To date we have been unable to find evidence that the Act will improve outcomes for disabled children and children with SEN, and so we would be interested in seeing the evidence you rely on in making this statement, and the underlying associated data."

You can read our letter here.

House of Commons Select Committee inquiry: CAMHS

We posted in February setting out details of a House of Commons Select Committee inquiry into CAMHS and asking for your help. Read the details here.

Your response was fantastic. Thank you!

We have now submitted a paper taking into account the feedback we have received from parents and professionals.

We need to ask for permission before we use the paper publicly so watch this space.

“The role of Independent Supporters is not to challenge local authority decisions”

 Background

You may remember the Department for Education’s (DfE) fanfare announcement of £30 million for the creation of ‘SEN Champions’, also known as Independent Supporters (IS).

Many organisations immediately applauded this initiative despite the complete lack of detail and limited consultation surrounding the proposal.

We were sceptical and so we raised questions - see our previous blog post here.  We wrote a letter to the DfE setting out our concerns. You can read that here.

In February, the DfE responded – see our blog post here. A copy of the DfE’s letter can be found here.

We felt it didn’t answer all the questions so we wrote another letter and produced a response document.

We received a response on 3^rd March which we are now posting here.

Our response

We thank the DfE for its response but remain concerned about the purpose of these proposals and the potential misdirection about their substance. Our response is as follows:

A service for parents?

First, we remain unconvinced that this is a proposal which will substantially benefit disabled children and young people. Indeed, it now seems clear that Independent Supporters are less ‘SEN Champions’ and more a bureaucratic mechanism to help LAs manage the change to Education, Health and Care Plans (EHCPs) by providing additional staff to give parents details about the new EHCP system and avoid chaos in the changeover.

This seems to be confirmed by the DfE’s comment that:

They are intended to add to the existing services that local authorities can draw upon to support families, not to replace them.”

So they are services for LAs to draw on - and we thought they were champions for parents.

Access for all?

Second, we asked whether there would be open access to the service. It appears not. The DfE confirms that Independent Supporters should be:

"“targeted at families in most need of support. How it will work in practice will vary in each local area."

Does this mean that LAs will decide who gets access? The DfE has not disputed this. Neither has it confirmed who will decide which families are ‘most in need of support’ 

This is deeply unsatisfactory. It leaves parents with an inconsistent service which is largely dependent on local arrangements. It also potentially prioritises the needs of LAs (who cannot always be relied upon to act consistently or lawfully) above the needs of disabled children and young people.

Supporting families to take action?     

Third, we asked : will Independent Supporters be able to advise families taking action against LAs, including at Tribunal? 

The DfE initially responded ambivalently:

“The nature of Independent Support will vary, depending on the needs and circumstances of individual families”

 However, in reality, the answer is clearly 'NO' as the DfE has confirmed:

 “The role of Independent Supporters is not to challenge local authority decisions, rather to make sure families and young people have all the information and support needed to play a full part in assessment and planning and make their views properly heard.” 

So, in reality, they’re not ‘champions’  at all. They provide the LAs' information about the system to parents.

The evidence supporting Independent Supporters

Fourth, we asked for copies of all the evidence directly supporting the announced proposal for Independent Supporters. We were given generic references to the Lamb report (2009), the Green Paper (2011) and the Draft Code of Practice consultation (such as it was).

It is disappointing that the proposal was never in the public domain and open to public discussion before its announcement as a fait accompli. We are not aware of any individual or organisation who has advocated the creation of ‘independent supporters’ in the form proposed. If you do, let us know.

We would also like to know how the DfE chose the organisations it decided to speak to and why those organisations did not press for wider debate.

The absence of open consultation

Fifth, we raised our concerns at the lack of open consultation. The DfE response was that:

 

“All individual Parent Carer Forums were not directly engaged prior to the announcement, but as my earlier letter made clear we did engage their National Network. The SEC and a wide range of other organisations were directly contacted on the day of the announcement and the Department and CDC welcome any comments from SEC and other organisations as the details of the programme are developed.”

This is not good enough. 

We believe there has been too much 'behind the scenes' discussion between the DfE and selected organisations throughout the reform process. However, decisions made by public bodies about the use of public funds which affect the lives of vulnerable families should be open to the highest levels of scrutiny and discussion. Further, we think the Public Sector Equality Duty obliges public bodies to have due regard to those who are protected under the Equality Act when making their decisions. Where was the stakeholder engagement with protected groups?

We also think it is disingenuous to suggest that debate will be welcomed after a decision has already been made and the money has been put in place. The scheme has already been decided on. Further, we have yet to see any evidence that the Council for Disabled Children (CDC) is willing to engage in discussion on the substance or implementation of this proposal. Indeed, thus far, they have left the DfE to respond for them rather than provide direct answers to our questions.

We would ask:

• Does the Special Educational Consortium (SEC) consider that being informed on the day of an announcement is acceptable? If not, we would invite them to take this up with CDC and the DfE. They should also consider taking up the offer to make representations on the IS scheme.

• Similarly, if Parent Carer Forums (PCFs) are unhappy about their National Network engaging in discussions without consulting them, we would urge them to raise this with the NNPCF and to hold their national network to account.

 Silence from the CDC

Sixth, we think it is deeply disappointing that a charity whose brief is to represent the interests of disabled children (CDC) has not been more forthcoming with information about why it is undertaking this project for the Government. The DfE tells us

“the CDC has already received more than 250 enquiries from individuals and organisations, the majority of which have expressed an interest in delivering Independent Support.  CDC will invite bids from a wide range of private, voluntary and community sector organisations in the late spring/ early summer.”

We contacted the CDC again after it started advertising for posts but it has not responded and has left the DfE to reply for it rather than explain its involvement. We think it should explain why it believes this initiative will help families given the specific restraints set out above. We also believe it should explain its extraordinary use of terms like ‘culture of dependency’ and ‘resilience’. They are patronising and derogatory and have no place in the SEN debate.

A confidential contract?

Finally, we asked the DfE why it believed its contract with the CDC for the delivery of this project is confidential. It was not put out to open tender. We have simply been told, again:

“The specific sums identified for the CDC’s management fee to deliver the Independent Support programme are confidential”.

We have already been informed by the DfE that many of the core provisions relating to the implementation process (e.g. the ‘robust’ procedures for tendering and securing the independence of Independent Supporters) will be set out in this contract. So, how can it be right that it is withheld from public consideration?

We have made a request under the Freedom of Information Act 2000 for the release of this document. If the DfE thinks it has grounds to withhold it, it should set out which statutory exemption applies.

Were you involved in the discussions with the DfE? What do you think?

The DfE tells us that it consulted the following organisations prior to its announcement:

• Action for Children
• The Association of Directors of Children’s Services
• Barnardo’s 
• Contact a Family
• The Council for Disabled Children 
• KIDS
• The National Network of Parent carer Forums
• The National Development Team for Inclusion
• Scope
• The Together Trust

We have told you our views. We would very much like to hear the views of any, or all, of these organisations.

Why we are demanding justice for LB (Connor Sparrowhawk) and all our young people

“All human beings are born free and equal in dignity and rights” 

Article 1 UNDHR

Many people reading this will already be aware of the appallingly unnecessary death of Connor Sparrowhawk (movingly known to his family as LB – ‘laughing boy’). Connor’s life was tragically cut short by profound failings in his treatment and care whilst at a short-term assessment unit run by Southern Health. Connor, who had autism, learning disabilities and epilepsy, drowned in the bath at the treatment centre. The independent report into his death, which can be found here, concluded his death was preventable. The unit had already been the subject of a damning inspection report by the CQC after his death which can be read here.

We have followed the story of Connor, his life and his death, through the impassioned and eloquent writings of his mother, Sara Ryan on her blog: My Daft Life. Connor was clearly unique and much loved.

We wanted to add our words of support to Connor’s family at this dreadful time. We wanted to say how much we support them and how much we admire the way they have pursued justice for him. They honour Connor with their actions and dignity.

But our sympathy cannot change anything and change is what we need because we have had enough of our young people being treated as second class citizens because of their disabilities. We are tired of having them considered a burden and/or ‘too expensive’. We are outraged by the profound indifference and hostility they may encounter from those who are paid to help them. 

We demand change now. We demand justice: for Connor and all disabled children and young people.

Human rights and justice now

We believe that ensuring respect for disabled people's inherent rights to dignity and equality are essential first steps in any process of change. Nelson Mandela said that “to deny people their human rights is to challenge their very humanity”. This is self-evidently true, yet, time and time again, we witness the denial of basic rights in relation our own children. In being denied their human rights, they are, as Mandela said, being dehumanized.

Why does this happen when the legal and moral imperatives for change are on their side? The law protects them and yet it does not operate to safeguard their interests in practice. Why?

We need to start demanding answers to these questions and we need to start using the legal language of human rights to exact change at every level: social, political and economic. We must put an end to indifference and the casual violation of children’s rights and the rights of disabled people. We put this bluntly because injustice deserves no disguise, fine words or positive spin.

We should not forget that, although it is easy to isolate us or sideline us from the main debates on politics, health and education, the law remains on our side. The international human rights framework can obviously be applied in the education and health context and we should use it. In addition, the Equality Act 2010 entitles our young people to equal treatment which is more than a prohibition on discrimination: it is a right to have difference respected as a matter of law.

By demanding respect for rights, we emphasise the inviolable nature of our children’s fundamental dignity in all matters that affect them, no matter how challenging this is for others. We demand that decision-making and actions are conducted and carried out in ways which promote and safeguard their rights from violation. We shift focus from “servicing” the “needs” of our children and young people to building their capacity to understand, claim and fulfil their rights. We also specifically reinforce the legal obligations on state authorities to understand, respect, promote and guarantee these rights.

So we say to all those who possess a louder voice than us, including the large charities working in this field, that it is never the wrong time to do the right thing.

Stand with us.

Demand justice for LB and all our young people.

Speak out for equality and challenge inequality.

Shout loudly that “all human beings are born free and equal in dignity and rights”.

Work tirelessly to make this mean something in practice.