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10th  October 2012


LETTER TO THE EDUCATION SELECT COMMITTEE SUBMITTING EVIDENCE IN CONNECTION WITH THE CHILDREN AND FAMILIES BILL

Caroline McElwee
Committee Assistant, Education Select Committee
House of Commons
7 Milbank
London SW1P 3JA

10th  October 2012

 
Dear Ms McElwee

Children and Families Bill; Pre legislative Scrutiny.

I am responding to the call for evidence by the Education Select Committee, in relation to the draft Children and Families Bill.  

Who am I?

I am a solicitor who practised litigation for 11 years in major law firms, before giving up work to look after my severely disabled child. My son has cerebral palsy, is unable to walk or talk, is doubly incontinent, epileptic and severely autistic.

In 2007 I took Birmingham City Council to the Special Educational Needs and Disability Tribunal to get my son into a non-maintained specialist boarding school, where he now lives. I have written a book, Standing up for James, which contains detailed evidence of the workings (and failures) of the current system for disabled children who also have SEN. This was released on 3 September 2012. It has a foreword by Rosa Monckton in which she says ‘Jane Raca has written a very important book which should be required reading for every MP…’  I am sending a copy of my book to the Chairman of the Education Select Committee, Mr Graham Stuart MP, and fervently hope that every Committee member will be able to find the time to read it. 

My evidence

I have evidence to give that could be a submission under several of the questions that the Committee has asked. I answer the questions specifically at the end of this letter.
 
The evidence relates to the most severely disabled children, such as my son.

Where a family can no longer cope with the care of such a child, because he or she requires intensive care/therapy/interaction 24 hours a day, then this is initially defined as a social care issue. The parents must turn to social care to provide respite and support at home. Cash strapped councils are failing to do this. When the family begins to fall apart, as it inevitably will do, then at present the parents have four choices:

1.      They can appeal to the Local Government Ombudsman.
2.      They can apply for a judicial review of the refusal to provide support.
3.      They can ask for the child to be ‘accommodated’ (taken into care).
4.      They can appeal to the First Tier Tribunal.

The problem with the first option is that it takes months; even years as the parent must exhaust a council’s internal complaints procedure first before going to the Ombudsman. 

The problem with the second option is that it is expensive, time consuming and the court cannot look at the underlying merits of the case, only the decision making process of the local authority.

The problem with the third option is that the council may not agree to accommodate the child. I was told twice that my son didn’t ‘qualify’ to be accommodated even though my marriage was breaking down and I was suicidally depressed. Also, why should a parent have to suffer the ignominy of handing over their child to the state, in order to get that child the care it requires?

The problem with the fourth option, is that the parent will only succeed if they can show that the child’s special educational needs requires a ‘waking curriculum’.  Proving this is a complex and technical matter. It is also a highly artificial way to look at the needs of a severely disabled child. 

The introduction of EHC plans is fantastic. However, unless the health and social care elements of them can also be enforced through the First Tier Tribunal, (or another independent body) there is a very real possibility that they will not happen.

So, to answer the Committee’s questions specifically.

General

Is there anything missing from the draft Bill?

A mechanism whereby a decision of a local authority or health service in relation to the health and social care elements of the EHC plans can be challenged in an independent forum.

Specific

Whether it would be appropriate to move away from "special educational needs" and use the term "learning difficulties and/or disabilities" instead in the new system?

Most definitely, but this will only be a token change if the health and social care elements of their EHC plans are not enforceable against local authorities and health services.

3.Should the scope of the integrated provision requirement be extended to all children and young people, including those with special educational needs?

Yes, as this would support disabled children without SEN, but again the non -educational parts of EHC plans must be challengeable and enforceable.

 
Yours sincerely

 JANE RACA'



_____________________________________________________________________



20 NOVEMBER 2012

ARTICLE FOR WESTMINSTER EDUCATION FORUM

In 2001 Helen Rogan, an occupational therapist, slashed her wrists and those of her autistic 11 year old son, and held him as they jumped to their deaths from a viaduct. (1)

In 2005 Wendolyn Markcrow took a plastic bag and suffocated her son with Down’s syndrome, after caring for him for 36 years. She then tried to cut her own throat. (2)

In 2006 Alison Davies took her 12 year old son who had Fragile X syndrome to the Humber Bridge, where they leapt into the estuary below and drowned. (3)

I nearly ended up next on this list of tragic stories. In 2007 I was caring for my disabled son James, 24 hours a day. He has cerebral palsy, epilepsy and autism. He can’t walk or talk and is doubly incontinent.  I didn’t contemplate harming him, but I did dream of walking into the local reservoir and just keeping going until the water closed over my head.

I had no support at home, just a few days respite per month which had taken a year and an appeal to get.  James was suffering as I couldn’t care for him properly; so were his two siblings, and my marriage was breaking down.  I wrote a report begging for James to go to a residential school. But I sent it to the wrong department. It went to social care, not education, and they didn’t answer. When an independent reviewing officer ordered social care to provide more help at home, nothing happened. I was also told they wouldn’t take James into care even if I asked (which I didn’t) as he didn’t qualify.

I eventually found out that to get James into his residential school, I had to appeal his statement of SEN. In order to succeed, I had to show the judges of the SEND Tribunal that he needed education beyond the school day. But his non-educational needs could not be taken into account. So the fact that he woke up for hours each night, would not leave the house and smeared faeces all over the furniture was irrelevant.

I was very lucky in that I had a legal background. I was able to work around this artificial divide, and James is now flourishing in his school. There is no social care tribunal though and I have spent five years fighting social care over James’s respite package for the holidays. Other parents I know are not so lucky and are still living wearying, grinding lives without any support at home.

When I read that the Children and Families Bill proposed joint education health and care plans, I was elated! But the elation did not last long. There is no proposal to make the care part of the plans appealable. This renders the plans little more than a token. Local authorities in these cash strapped times will continue to resist the enormous cost of care packages for the most disabled children, and parents will still only be able to challenge them effectively in a forum which focuses on the child’s education.

We must make sure this doesn’t happen, or sooner rather than later, another woman will be added to the list of mothers who simply couldn’t carry on.'


© Jane Raca 20 November 2012   

(1) Nigel Bunyan, The Telegraph online, 5 October 2002 (2) Sandra Laville, The Guardian, 3 November 2005 (3) Deidre Fernand, The Sunday Times, 21 May 2006


____________________________________________________________________

 


11 MARCH 2013


FIRST LETTER TO CHILDREN AND FAMILIES MINISTER EDWARD TIMPSON ABOUT THE CHILDREN AND FAMILIES BILL 

Mr Edward Timpson MP
Parliamentary Under Secretary of State for Children and Families
Sanctuary Buildings
20 Great Smith Street
Westminster
London
SW1P 3BT

11 March 2013 Open Letter (by email and post)

Dear Mr Timpson

Children and Families Bill

I am a lawyer and author with a 13 year old disabled son. James has cerebral palsy, epilepsy, learning disabilities, challenging behaviour, and is severely autistic. 
 
I am writing to you because there is desperate suffering going on all over the UK, which the Children and Families Bill currently before Parliament fails to remedy, even though it was intended to help.
 
I refer to the plight of families with severely disabled children, who are caring for them 24 hours a day from birth. These children have extensive, specialist needs. They may wake for hours in the night and need supervision or postural change. My son smears his faeces around the bedroom and sometimes attacks the person trying to clean it up. My friend’s autistic child is regularly up at night endangering himself and others.  On one occasion he flooded the house and on another he climbed onto the roof. 

There are parents trying to survive for years, raising these children on little sleep, with no breaks and no help.  They are suffering from depression, exhaustion and marital breakdown. Some have killed themselves and their children because they cannot face another day. 

This is happening despite the fact that local authorities are under a statutory duty to support these families from birth. [1] Councils are relying on the ignorance of parents about their entitlements, and the use of delaying tactics, to avoid the considerable expenditure which is needed.[2] 

What can a parent do, if their local authority refuses respite and home help, as initially happened to us? The only answer is to complain to the Local Government Ombudsman, who requires that you first exhaust the council’s internal complaints procedure. This all takes months, even years. The alternative is to apply to the High Court for Judicial Review of the council’s decision. Neither option is a realistic or acceptable solution.

If life for these families is to improve, they must be able to turn to a fast, independent forum for redress. Such a forum already exists in the Special Educational Needs and Disability Tribunal. That Tribunal hears appeals from parents about their children’s special educational needs. A parent can appear without legal representation and have a hearing within 4 months, in front of specialist independent judges. 

Why can’t that Tribunal also rule on social care and health provision for these very disabled children, whose complex needs are so often inseparable from each other?  

The Children and Families Bill misses a golden opportunity to remedy this injustice. It proposes that these children’s education, social care and health needs should be viewed together, and is introducing combined plans to replace the current education-only statements. However, the right to appeal to the Tribunal will not apply to the social care and health contents of the new plans, only the education provision. So parents will be left in the same situation as now. 

The Government’s Green Paper, which preceded the Bill, said ‘This Green Paper is about …families – who have consistently called for better support for their children and themselves. Families of the most disabled children who are providing 24 hour care from birth… ’ .[3] 

If the Government really mean this, then the Bill must be amended to allow a right of appeal to Tribunal in relation to all elements of the new combined plans. New statutory duties alone will not be enough, as local authorities (and health services) may still try to get around them. If parents with the most extremely disabled children can’t get proper care provision, then a situation which belongs in a Dickens novel, not 21st Century Britain, will remain unchanged.

 
Yours sincerely

Jane Raca

[1] Children Act 1989 s 17(1)(a). 
[2] ‘The Council does not have the resources to fulfil all of its statutory obligations and so may avoid identifying a need which it cannot meet. Like other Councils across the country, it plays for time and space to protect its budgets. It relies on applicants’ lack of knowledge about their rights, to achieve this. When it meets a strong applicant, it adopts the historic Russian military strategy of retreating, while it strengthens its position and weakens that of its opponent.’ Honorary Alderman Len Clark, chair of Birmingham City Council’s inquiry: ’Protecting Children and Improving Social Care’ 2009.
[3]Green Paper ‘Support and aspiration: A new approach to special educational needs and disability’ March 2011.

 _____________________________________________________________________

15 March 2013

SUBMISSION TO PUBLIC BILL COMMITTEE RE  CLAUSE 50 CHILDREN AND FAMILIES BILL


1.       Introduction

I am a former litigation solicitor, and have a profoundly disabled son, James, who is 13. He has cerebral palsy, epilepsy, learning disabilities, challenging behaviour and is severely autistic.  I have extensive personal experience of the education, health and care systems for disabled children. What my family went through over a decade, shocked me so much I wrote and published a book about it: Standing up for James. The book has had national press coverage, as has my story.[1]  I am now working with Scope, Mencap, the National Autistic Society, and Dame Hannah Rogers Trust to raise awareness about the reality of living with severe disability.

 2.       Summary

My submission today relates to the right of parents to appeal the social and health care provision received by their disabled children. Whilst the Children and Families Bill introduces joint EHC plans, it does not extend the right of appeal from those plans beyond the education content. I believe this must change, as the failure of local authorities in particular to provide adequate social care for severely disabled children is leading to great suffering, for which there is no realistic redress.


3.       Why is there suffering at present and no redress? 

If a child needs 24 care from birth and his/her parents are refused respite or home help provision, then they are at grave risk of personal and family breakdown. They only have two options:

o    They can apply for Judicial Review
o    They can appeal to the Local Government Ombudsman.

Judicial Review is an expensive, lengthy and technical option. It is also unsatisfactory. The High Court can’t order the provision it thinks necessary, but can only rule on the local authority’s initial decision.

As for the Ombudsman, if parents are even aware of their right to complain, they have to start by exhausting the council’s internal complaints procedure first. The whole process takes months, even years.

By comparison, if they wish to appeal the educational provision for their child, they can appeal to the First Tier HESC Tribunal [Now SEND Tribunal], be unrepresented and be heard by independent specialist judges within 4 months.This Tribunal often hears issues of social care and health and is ideally placed to rule on the complex intertwined needs of a severely disabled child.

I accept that there are statutory duties on local authorities to provide support for disabled children, who are defined as ‘children in need’ from birth.[2]  However, for budgetary reasons local authorities may try to avoid being caught by these statutory duties. [3] 

In my experience unless a parent has a realistic method of challenging the local authority, then even new statutory duties will not go far enough and there will be no change. 

4.       My evidence

Despite being a partner in a national law firm before James was born, I found myself unable to see beyond getting through each day in a haze of exhaustion and depression. James required one to one care for all waking hours. He wouldn’t leave the house except to go to school, and attacked us if we tried. We were prisoners in our home.

He woke for hours each night, would eat his own faeces and smear it around the room. Sometimes he had a seizure in the night and nearly died, as he was unattended. 

It was only when James was 5 years old and my husband and I broke down in front of his consultant that we found out that we were entitled to respite. We were then turned down by the council, and it took 12 months of writing letters before we got just 24 nights a year with James in a respite centre. We had no help at home.

I gradually became suicidally depressed and my marriage began to break down. Both our children were on waiting lists to see clinical psychologists for behavioural problems.  

Despite independent reviewing officers repeatedly recording their decision that social workers should assess our family for home support as a matter of urgency, we had no funding for help at home until four years after social care first became involved with us.

I eventually found out that if I challenged James’s statement of special educational needs, I might get him in a residential school. It took a long time to get to this point, as despite having been a partner in a national law firm, I didn’t know that the ‘disabled children’s team’ at the council was in fact a social care team. I had to go to the education team to appeal James’s statement and this department seemed totally unconnected with social care.

I was then in the highly artificial situation of having to prove that James’s ‘educational needs’ could only be met by a waking curriculum: i.e. that he needed ‘education’ outside school hours. If I couldn’t prove this I would fail. So I hired lots of experts to show that for James, learning to communicate with picture cards was education, as was doing therapy stretches to help him walk. I argued that neither of these things could just stop at 4pm.

I was very fortunate in understanding this and James got his placement. He has developed as a much more mature, tolerant and empowered individual as a result of the intensive and consistent support provided by Dame Hannah Rogers Trust. However 5 years later I am still battling with social care over his holiday provision. I have been asking for it to be increased since April 2009, to no avail. After complaining to my councillor and MP twice I discovered in 2010 about the Ombudsman and went through the council’s complaints procedure. An independent investigating officer produced an 80 page report vindicating me on all counts and asking the council to consider a full time placement for James. They did as he asked and still rejected it. Because they had done as he asked, I then couldn’t complain to the Ombudsman. I have now started all over again, asking for a full time placement. Six months have elapsed with no answer. The internal complaints procedure is not concluded so I can’t yet go to the Ombudsman. 

We cannot cope with James at home now; there are safety issues for him, his siblings and us. He requires 2:1 care most of the time which we can’t provide. If the council do not approve his full time placement soon, I will have to ask for him to be taken into care in the holidays, and pray they leave him at Dame Hannah’s.

5.       Conclusion

Even with a legal background and supportive family I have struggled with this system. I have proved in Tribunal that James needs extensive care including at least 1:1 supervision during all waking hours. Yet I have had to continue arguing the case for his holiday cover for 5 years without resolution, repeating the same evidence in one report after another.

If the Committee wish to see any of the written evidence which I have carefully collated over the years (and which is reproduced in my book) then I can produce a schedule for them. At present I am anxious to submit this memorandum as I believe members will be considering clause 50 of the Bill imminently.

 Jane Raca 11 March 2013

[1] www.standingupforjames.co.uk
[2] Children Act 1989 s(17)(1)(a)
[3]The Council does not have the resources to fulfil all of its statutory obligations and so may avoid identifying a need which it cannot meet. Like other Councils across the country, it plays for time and space to protect its budgets. It relies on applicants’ lack of knowledge about their rights, to achieve this. When it meets a strong applicant, it adopts the historic Russian military strategy of retreating, while it strengthens its position and weakens that of its opponent.’ Honorary Alderman Len Clark, chair of Birmingham City Council’s inquiry: ’Protecting Children and Improving Social Care’ 2009.

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13 MAY 2013

SECOND LETTER TO CHILDREN AND FAMILIES MINISTER MR EDWARD TIMPSON ABOUT THE CHILDREN AND FAMILIES BILL

                                              
 
Dear Mr Timpson

Children and Families Bill

On 11 March I wrote to you to express my concern over the absence in the Children and Families Bill, of a right of appeal to tribunal, for the health and social care contents of EHC plans. As drafted (clause 50) it only allows for a right of appeal in relation to the educational content. Parents appealing social care decisions in particular, will continue to have inadequate remedies against local authorities which fail them. 

Subsequently Mr Rob Buckland MP proposed an amendment to the Bill which would have extended the right of appeal to all parts of EHC plans. However the amendment was withdrawn following statements by you. You said:
 
EHC plans will be for children and young people who have special educational needs, and it is therefore right that the tribunal’s jurisdiction should be focused on decisions about special educational needs. It should be remembered that when a health care or social care provision set out in a plan is wholly or mainly for the purposes of education and training, it is to be treated as a special educational provision…There is no reason to extend the tribunal’s powers so that it can deal with appeals on health care and social care more generally. There are already procedures that can hear appeals in relation to the health care and social care that will be set out in plans and not treated as special educational provision…For social care complaints, as now, the main route for families to bring social care services to account will be through local authority complaints systems and the judicial review process.’ 

You went on to reassure the meeting that the new joint commissioning clause in the Bill (clause 26) places local authorities and their partners under a duty to agree how complaints should be dealt with. You also referred to the new draft SEN code of practice, which provides for the introduction of dispute resolution services and mediation. 

Whilst it is to be fervently hoped that these measures result in an increased amount of parents getting the support they need, if that support does not materialise then they will still be in the same dire situation as now. The local authority complaints procedures, the Local Government Ombudsman and judicial review are not appropriate remedies for the failure to provide adequate social care. 

I have received a reply to my first letter to you, from the Department for Education. The reply says

‘The Government believes that it would be a very different role for the Tribunal to make judgements on medical assessments…Similarly difficult questions of professional judgement can arise around social care assessments.'

I do not have sufficient knowledge to comment on the tribunal’s capacity to consider health needs. However I do have sufficient knowledge in relation to social care and the DfE’s reply does not make sense to me. If the tribunal judges are expected to be capable of considering a disabled child’s social care needs and deciding which of them are educational, surely they must be capable of considering those remaining social care needs which are not educational? They must at least be as able to do that as the Local Government Ombudsman.

Yours sincerely
Jane Raca

_____________________________________________________________________


13 AUGUST 2013


ARTICLE SUPPORTING PETITION BY THE NATIONAL AUTISTIC SOCIETY FOR THE RIGHT TO APPEAL ALL PARTS OF EHC PLANS TO TRIBUNAL

My story: why I am supporting the National Autistic  Society’s  petition for a single point of appeal for parents of autistic children.

My son James is 14, and severely autistic. He finds changes in routine terrifying. He hates to leave our house except to go to school.  He can only cope with life by having constant one to one support, and expert psychological management. If this doesn’t happen, he can become violent, biting himself and lashing out at his family and carers. He is obsessed with apples, and has developed complex rituals around holding them and dropping them. If you don’t follow these rituals, he may explode with rage.

His sleeping patterns are broken, and his day often begins in the early hours. He has epilepsy and needs 24 hour supervision in case he has a seizure. On top of all this he also has cerebral palsy, and needs regular physiotherapy, and continuous postural management. He can’t walk or talk, and is doubly incontinent.

I have two other children and my husband works away from home during the week. When James was 5, I became suicidally depressed by the effort of looking after him. I began the long and soul destroying journey of trying to get help. Despite having been a solicitor, the fog of depression made it difficult to work out what to do. I was sure James needed to go to a year round specialist boarding school, where he would have strict routines and one to one care all the time. But I didn’t realise this meant going to the education department and getting his statement of SEN changed.  Instead I went round and round in circles with the social care department.

Meanwhile, they failed to provide any help at home, and it took a year to get even a small amount of respite, so we could give the other children a break. Eventually, I worked out the system, and appealed James’s statement of SEN to the Special Educational Needs and Disability Tribunal, to get James his full time school. However, the SEND Tribunal could not rule on his holiday provision, as that was deemed to be social care; they could only consider his educational needs. Even though they judged that these educational needs included learning to communicate with pictures at all times, and keeping physically mobile through regular physiotherapy, the Tribunal could only order the council to meet these needs in term time. To get any support in the school holidays (14 weeks of the year) we would have to go back to social care and start all over again.

There is no social care tribunal and once again I went round in circles. In total it took another 5 years to get James his full time placement. This was only achieved by:
·         Countless letters from me to social care, and several letters from my MP and
          Councillor.
·         Four written reports produced by me with a total of 326 pages of evidence. ·         A complaint following the council’s statutory complaints procedure,which 
          was upheld on all eight counts.
 ·        A complaint to the Local Government Ombudsman.

During these 5 years, James flourished at his boarding school, Dame Hannah Rogers in Devon. He developed friendships, learned to go out on trips and can now communicate using an ipad. In sharp contrast he remained virtually a prisoner in the house on his visits home, mostly too scared to go out. He suffered through having to cope with weeks of the year with minimal support. I still bear the physical scars of his fear and boredom, as we failed to manage and occupy him at home.

If the SEND Tribunal had been able to rule on James’s needs holistically, we would all have been spared years of suffering. The Ombudsman never got to rule on my complaint, as the council finally gave in. Just as well, as I had reached the appalling decision that I was ready to ask for James to be taken into care in the holidays. He had grown so big, that it just wasn’t safe to have him home any more.

I discovered recently that I could have applied to the High Court to review the decisions of social care over James’s placement. However the Court could not have ordered whatever remedy it thought fit. It could only have looked at the legality and fairness of the council’s decisions. If I as a solicitor struggled to find my way through this maze, where does that leave other, unqualified parents? If someone as physically disabled as James can’t get help, what is happening to physically able autistic children?

 I know the answer, as my friend’s autistic child climbs onto the roof in the middle of the night and goes to the toilet in her bed. Her respite is being reduced. The current social care system is not working and there is no effective mechanism to force local authorities to meet the needs of autistic children. We have a golden opportunity with the Children and Families Bill to create a unified system of appeal which is speedy, effective and independent of local authorities. We must make sure that we do not let it slip through our fingers.

© Jane Raca 21 August 2013 

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17 OCTOBER 2013

ARTICLE IN HUFFINGTON POST SUPPORTING PETITION BY EVERY DISABLED CHILD MATTERS FOR AMENDMENTS TO CHILDREN AND FAMILIES BILL

http://www.huffingtonpost.co.uk/jane-raca/every-disabled-child-matters_b_4108255.html



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9 DECEMBER 2013


LETTER TO THE PRIME MINISTER


Dear Prime Minister 

I am the mother of a severely disabled child.  He has cerebral palsy, epilepsy, learning disabilities, challenging behaviour, and is severely autistic. He uses a wheelchair, can’t walk or talk, can’t use his left hand and is doubly incontinent. I am writing to you to express my concern over the lack of social care provision for children like him. 

Many local authorities are failing to provide respite and home carers, and this is causing great suffering. There are parents trying to survive for years, raising their children on little sleep, with no breaks and no help. They are experiencing depression, exhaustion and marital breakdown. They have no hope of affording the ongoing specialist care which is needed. If they can summon the strength to take on their local social care department, they face a lengthy, ineffectual complaints process. What they need is a fast, independent forum, with the power to award the necessary support for their child. 

The Children and Families’ Bill misses a golden opportunity to achieve this. It introduces joint education, health and care (EHC) plans in place of statements of special educational needs. For the first time parents will have all their disabled child’s needs recorded in one place. But they will still only be able to appeal the education content of the plans to an independent tribunal, as is the case now. That happened to my family; we won an appeal over my son’s school, but it took us another five years to get the social care he needed. Why can’t the bill provide a right of appeal to tribunal, over all the contents of EHC plans?

The government has said that it doesn’t support a right of appeal against social care issues. It doesn’t want local authorities to be under a statutory duty to provide the care part of individual EHC plans, since they may not have enough money to look after both disabled children and children at risk. This is the finite resources argument, and goes to the heart of the matter. We define ourselves as a society by the priorities we choose. Surely these priorities include providing humane levels of support to people who from birth will never be able walk or talk, let alone work? This should not have to be at the expense of protecting children at risk of abuse. Pitching those two sets of critical needs against each other is unacceptable.

The National Autistic Society has presented the government with a petition of over 10,000 signatures on the importance of a single point of appeal from all parts of EHC plans. That is a lot of parents, but it is also just the tip of the iceberg. They are telling you that they are not prepared to carry on battling on all sides. They need the EHC plans to make a real difference to the most vulnerable people in our society.

 Yours sincerely    

 JANE RACA 

 Author Standing up for James


______________________________________________________________________

17 DECEMBER 2013

SPEECH TO ALL PARTY PARLIAMENTARY GROUP ON AUTISM OVER IMPORTANCE OF RIGHT OF APPEAL TO TRIBUNAL OVER SOCIAL CARE ISSUES IN EHC PLANS

Attended by Children and Families Minister Edward Timpson and then Shadow Children and Families Minister Steve McCabe.

Introduction

The National Autistic Society has invited me to speak today, because I have a child with multiple disabilities, including severe autism. His personal story is very relevant to the SEN and disability provisions of the Children and Families Bill currently going through parliament and in a minute I will tell you that story.

I have been told that everyone here will be familiar with the concept of joint education health and care plans, which will replace statements of special educational needs. There is no doubt that from a parent perspective, the bringing together of the three services involved in their child’s life is warmly welcomed.  However, recording the child’s needs in one document is only the beginning. If parents can’t get each of the three bodies to put in the plans what their children need, or to provide it once it is in there, they must be able to challenge those bodies. This is more important than ever at time of austerity, when services are having to make deep cuts.

At present, parents can challenge educational provision through a tribunal. That is a very effective process.  It takes about 4 months, the judges are independent, and expert in the field, and parents can represent themselves. But if the parents want to challenge health or social care, they have to go through different internal complaints processes, leading ultimately to an ombudsman. This takes months if not years, is not independent and the remedies that can be ordered are limited. It is completely inappropriate for a situation regarding a growing disabled child’s needs.

So, not only are there three different points of appeal from the three services, (which is administratively impossible for parents to cope with), but  the complaints systems for social care and health are currently unfit for purpose. None of this this will change under the Bill as it currently stands. 

This means that families who already face the lifelong grief of a disabled child, will continue to suffer without adequate or any support, as they have been doing for far too long. The opportunity exists to change that by amending the Bill. There should be a single point of appeal to an independent tribunal, from all parts of EHC plans. Now I will tell my story.      

Many moons ago I was a commercial litigation partner in a national law firm. Life was hunky dory and high achieving. I had a toddler, Tom, who was not even 2 when my second son James was born 15 weeks early, with severe brain damage. By the age of 5, James had been diagnosed with cerebral palsy, severe autism, severe learning disabilities, epilepsy, and challenging behaviour. He couldn’t walk or talk, or use his left hand, and he was doubly incontinent. He woke for hours each night, sometimes smearing his faeces around the room. He often seized at night when were asleep, and on several occasions we found him floppy and blue and had to call an ambulance.

He would only leave the house to go to school, because only school could provide the very strict routines he needed. If we tried to take him out in the car we were violently attacked. Within the house, we had to follow the same exact sequence every morning and night, down to touching the wall at a particular point and eating the same cereal in the same bowl, sitting in the same position. I became suicidally depressed and Tom showed signs of disturbed behaviour. My marriage began to break down.

It simply didn’t occur to us to go to social care, but when we both broke down in tears in front of Jame’s paediatric consultant, she suggested we needed respite. We didn’t know what it was so she explained that James could go to a specialist centre for a few nights so we could get a break. We were so low, that we left it to a support worker to approach social care on our behalf. They came to our house to assess us, and then 3 months later we were told we didn’t qualify for respite. It took nearly a year and an appeal to get funding for James at a respite centre, for 24 nights a year. We still had no support at home.

For 2 more years we battled on, until I concluded that James could only live and learn with any meaning in a residential school. I thought he needed a full time placement. To my dismay our lawyer told us that the tribunal could only consider James’s education. Paradoxically, although for James, learning to walk and use pictures to ask for things was deemed ‘educational’, it seemed he was only supposed to do them things in term time. We won the tribunal against the education department. The first thing the social care department did was to cancel our respite. The school, Dame Hannah Rogers Trust, had assessed James as needing 1:1 sometimes 2:1 care all waking hours, 24 postural management and checking every 15 minutes through the night because of his epilepsy. Then for 14 weeks of the year we had nothing.  We faced being imprisoned together, me, my daughter then aged 4, and Tom, then aged 10, while Andrew was at work.

It took 5 years to get James his full time placement. Even as a lawyer I was operating in a fog of depression, which blurred everything. I didn’t know I could make a formal complaint about James’s social care provision. Between us my councillor and I wrote 6 letters and emails and received 6 holding letters back. We were going around in circles. My MP got involved. When I did find out about the complaints process, the complaint was worded by the council. The officer who investigated found for me on all 8 counts that had been drafted by the complaints department. However since neither he nor they were lawyers, it led nowhere. The council was simply asked to reconsider its decision not to give James a full time placement. It reconsidered, as directed, and still concluded that it wouldn’t give James a full time placement! End of complaint.

I could have gone to judicial review. Even as a lawyer that didn’t occur to me either. However if I had, the High Court would not have had the power to order what it thought fit for James. Only to review the administrative fairness of the council’s original decision. I lodged an appeal to the Ombudsman, but in the end, it was, ironically, an excellent social worker who got James his placement. One who took the time to investigate our family thoroughly, and to visit James at his school on a regular basis.  

My case is an extreme one, because my son is so disabled, and because my local authority, Birmingham, is in crisis and has been for many years. However, if I had to struggle this way with my legal background, and my son’s disabilities, what an earth is happening to other parents?  I know I am not alone. I get emails regularly from exhausted parents from all over the country. There are parents suffering depression in my situation who have killed themselves and their children because they can’t face another day. This has got to change. The government is refusing to agree to a right of appeal over social care in EHC plans, because for this right to be meaningful, there must exist a statutory duty to provide the individual care set out in each plan. Current statutory duties to provide social care to children in need are general, in that they are subject to the resources of the local authority. So, the Bill must be amended to provide a statutory duty to individuals, as well as right of appeal to tribunal over social care.

I don’t have experience of appealing against the health service and have deliberately confined my comments to social care for this reason. I believe that there may be different arguments against appealing to tribunal over health issues. If those arguments are insuperable, then please don’t throw the baby out with the bathwater. Half way is better than none.

I will finish with two quotes. The first was made by Judge John Aitken, Deputy Chamber President of the Health Education and Social Care Chamber, which includes the SEND tribunal.

''We are the Health Education and Social Care Chamber, and of course to whatever the policy may be and any resources which would need to be applied, this jurisdiction of the Tribunal would expect to deal with such appeals...’'


The second was made by Baroness Morris during Committee stage in the House of Lords on 6 November 2013.

If you really want to change the culture of three separate public services, you must not give them an excuse not to make the change. Throughout the discussion of this Bill, we have said that it is not about passing a law but about changing the culture. Having such a pivotal part of the whole procedure still split into three separate parts is actually saying, “At the end of day, we could not do it. We wanted to integrate, but when it got to the tough bit, the bit about the appeal, we, the Government, could not do it”.

Let’s not let that happen. Let’s not condemn disabled children and their families to another generation of silent suffering.