Children's social care strategy: Stable Homes, Built on Love
11 May 2023
This consultation was launched by the Department for Education in February 2023, to consider reform of the Children’s Social Care system in England. Below is my submission.
I welcome the focus on disabled children in these proposals. They fall into the category of 'children in need' simply by virtue of being disabled, and their needs can be very different to those who require protection from parental abuse or neglect.
Inclusion in dashboards of indicators for disabled children is overdue, as there have historically been insufficient data about them as a separate group.
My own experience is limited to children like my son, who has profound physical and learning disabilities, autism and challenging behaviour. He is 23 now, but was in residential education far from home, from the ages of 7 to 21. He attended three different residential schools, in different parts of England.
The needs of children like him are often complex and require specialist input. There is a chronic shortage of therapists and the quality and availability of local authority learning disability teams is a lottery. These are key factors leading to inadequate provision and even suffering. So is the difficulty in recruiting specialist, trained care workers who are capable of carrying out prescribed therapy routines.
The aspiration to have disabled children who require specialist residential settings, closer to home, will only work if there are sufficient teachers, therapists and premises nationwide. The reason why children often end up miles from their families, is that there has been insufficient government planning for this cohort and provision is limited and unevenly spread. This is despite the knowledge for at least two decades that the number of profoundly disabled children was growing substantially.
Instead, an ad hoc collection of charities and private providers serves these children, in environments built around their educational needs. To attend one, a child will have established that they require continuity across their education, beyond the waking day. For example, if their routines incorporate being put in a standing frame or using a communication device, staff must be trained to do this in evenings and weekends. Achieving the necessary degree of consistency, which requires regular supervision by specialist teaching and therapy staff, would be impractical off site.
The charities who provide these sites often have decades of experience and the relevant specialist staff. Not surprisingly, families whose children need residential education, want their them to live and attend school there. There are long waiting lists for these places. Unless their expertise can be replicated more widely and evenly, any attempt to bring those children closer to home to live, which is obviously much more desirable, will result in worse care for them.
SEND and alternative provision improvement plan
2nd March 2023
This plan follows the Green Paper published in March 2022, and the subsequent public consultation. None of the concerns I had about the Green Paper (see below) have lessened, save that there is now no specific reference to usurping the power of the SEND Tribunal by allowing panels to dictate which cases may be appealed to Tribunal.
As IPSEA charity points out in its response, ‘there is nothing transformational about the government’s plans.’
The law will not change and the plans are unlikely to see the light of day before the next general election.
I do however welcome a greater focus in the plan than was in the green paper, on those people with the most complex needs. Currently there is insufficient understanding of, or planning or provision for this group, which includes my son James.
SEND Green Paper March 2022:
Right support, Right place, Right time.
22 July 2022
H0w ironic that having recognised that the SEND Tribunal plays a vital role in ensuring better outcomes for children and young people, (see below) the Government will be restricting access to it under a green paper published less than a year later.
'Right Support, Right Place, Right time' makes no secret of the driver behind the review, which is to cut costs. The principle ways in which this would happen are:
The introduction of new national standards which will define and cost different types of special educational needs.
The introduction of mandatory mediation.
The introduction of independent panels to review assessments for Education Health and Care Plans and make recommendations to local authorities on the content, the placement and the funding needed.
Limiting the places that parents can consider requesting to a 'tailored list'.
Possibly restricting their right even go to Tribunal, unless agreed by the independent panel.
The extent to which parents' rights may be eroded is most stark in the potential granting of legal powers to a lay panel. The paper states 'We would need to consider whether this panel could make the binding legal judgements required to overturn previous local authority decisions'. That is usurping the powers of the Tribunal and utterly unacceptable.
Below is the response I filed with the Department for Education. For more information, the charity IPSEA has done fantastic work on illustrating the effect of the proposals.
SEND Review: Right support, Right place, Right time: Government consultation on the SEND and alternative provision system in England.
Response by Jane Raca MBE 22 July 2022
Capacity in which I am responding.
I am a former solicitor, now writer and disability campaigner, a Family Ambassador for Mencap, and the parent of a severely disabled son. My first book about him, Standing Up for James, was referred to during parliamentary debate on the Children and Families Act 2014 (‘the Act’). It was also featured in the Guardian and the Daily Mail.
I campaigned for the right to appeal social care and health provision in EHC plans during the passage of the Act. I was invited to speak about it by the All-Party-Parliamentary-Group on Autism, at a meeting in the House of Commons. I was awarded an MBE in 2018 for services to disabled people and their families.
My son James, now 22, has cerebral palsy, autism, epilepsy, severe learning disabilities and challenging behaviour. He attended out-of-area residential special schools and colleges from the ages of eight to 21. He had a statement of SEN from the age of two, then subsequently an EHCP. I have experience of going to the SEND Tribunal, and of supporting him in four residential educational placements, many miles from our home. I have dealt with four different health authorities and seven different hospitals on his behalf. He has been funded by social care, health and education, so I have experience of all three systems.
Question 1. What key factors should be considered when developing national standards to ensure they deliver improved outcomes and experiences for children and young people with SEND and their families? This includes how the standards apply across education, health and care in a 0-25 system
This question assumes that national standards are a good thing. Perhaps they could be, but here their introduction is dominated by the need to cut costs. They will in practice restrict the provision that can be sought by children and young people (‘CYP’) with SEND, by creating a tick box system. This is an inappropriate way of making provision for individual CYP. The same diagnosis may present very significantly from one person to another. Some people have combinations of SEND which are low incidence and their needs cannot be standardised in this way. The tick boxes will carry standard tariffs and this will inevitably limit access to the resources that some CYP will need.
The standards will include 'guidance on when an EHCP is required'. However, the existing law on when an EHCP is required is clear, under section 37 of the Act. It follows an assessment of need, with input from schools and other professionals.
The standards will include that ‘for those parents and carers with children with complex needs, there will be greater clarity … in when a special school is appropriate’. However those parents usually already know when a special school is appropriate. What they need is information on where to find the school best suited for their child’s needs, which may well be out of area. These places cost more and so are likely not to be included in the ‘tailored list’.
Question 3. What factors would enable local authorities to successfully commission provision for low-incidence high cost need, and further education, across local authority boundaries?
Successful commissioning would be improved by the availability of more specialist provision, more evenly spread across England. My son has had out-of-area-residential placements at school and college in Devon, Warwickshire and Cheshire, despite his family home being in Birmingham. He has benefited greatly from these placements when his needs could not be met nearer to us. As an example, he can now tolerate going into new environments without being terrified and attacking himself or others. He is non-verbal but can use a device to communicate with his carers. These are life changing things which have required living in a residential setting where care, education and health staff, including therapists, work as a multi-disciplinary team. The cost of his care for the rest of life will be greatly reduced because of this input.
However, his separation has come at great emotional cost to the whole family. I hope that some of the £2.3 billion allocated to deliver new specialist places will be invested in the creation of more new regional residential special schools and colleges with the requisite expertise. This would include a significant increase in the number of therapists supporting those schools.
Successful commissioning would also be improved by greater understanding by local authorities and care services of the holistic needs of the most complex CYP with SEND. This will hopefully improve following the introduction of Integrated Service Partnerships subsequently working alongside the proposed local SEND partnerships.
Question 4. What components of the EHCP should we consider reviewing or amending as we move to a standardised and digitised version?
I welcome the proposal to standardise EHCPs. I also welcome the proposal to review the distinction between social care provision in sections H1 and H2, which is incomprehensible to most parents.
As part of the digitisation and standardisation of the EHCP process, I would like to see a mandatory standard letter sent out by local authorities to all families that request an EHC needs assessment. This would set out their right to request that the local authority obtains advice from ‘any person [that the family] reasonably requests,’ as part of the assessment (SEND regulation 2014 6(h)).
The suggestion that parents are ‘overwhelmed and burdened with multiple assessments’ (page 32 para 16) does not apply to the making of EHC plans. Parents want as much specialist independent input as they can get for their child’s EHCP. Often the problem is that they don’t know they can request it themselves, nor that local authorities have a statutory duty to obtain advice from professionals other than the school or educational psychologist. In my son’s case, despite asking, I was never able to obtain a report from a psychiatrist or clinical psychologist after he was seven, despite attempting to do so for nearly 6 years. Most parents don’t even know they can ask.
Question 5. How can parents and local authorities most effectively work together to produce a tailored list of placements that is appropriate for their child, and gives parents confidence in the EHCP process?
I can't see any parent wanting to work with a local authority to provide a 'tailored list of placements', nor having their confidence improved by it. The word 'tailored' suggests ‘restrictive’ and which parent would want to restrict the choice of provision for their child? It immediately makes me feel suspicious that choices would be restricted to the less expensive, when the process had only just begun.
What parents need help with is a full list of what is out there, particularly for low incidence high-cost needs, where they will have to look out of area, as I have done. In my experience local authorities usually try to keep CYP within their area for costs reasons.
Question 6. To what extent do you agree or disagree with our overall approach to strengthen redress, including through national standards and mandatory mediation? If you selected Disagree or Strongly Disagree, please tell us why, specifying the components you disagree with and alternatives or exceptions, particularly to mandatory mediation.
I Strongly Disagree.
Clarity on dispute resolution process is always a good thing, and I would welcome a system that improves on local council complaints procedures. However mandatory mediation is draconian. It will mean inevitable delay in the SEND process, which will be counterproductive for some parents, especially those seeking high-cost placements where their appeal is really just a dispute about funding.
Mandatory mediation represents the beginning of a process in the Green Paper which seems designed to place barriers in the way of parents being able to access independent justice through the Tribunal. This really disturbs me. The fact that 96% of parents succeed either wholly or partially at Tribunal shows just how necessary recourse to independent judicial input is.
The introduction of statutory lay panels to sit as another layer in the EHCP process is insidious. I have personally experienced decisions made about my son by panels and they are deeply disturbing. I have no right to submit evidence, no right to attend, and can only obtain the detail of what was said (as opposed merely to the decision itself), through a subject access request. The membership of the panel is opaque and it is therefore effectively unaccountable to me, the parent.
Question 20. What will make the biggest difference to successful implementation of these proposals? What do you see as the barriers to and enablers of success?
The main barrier to the success of these proposals is that they are focused on saving cost rather than the genuine needs of CYP with SEND. They will not improve the experience of parents because they create more hoops for parents to jump through. Parents are less likely to get what their child needs and it will more difficult for them to enforce their rights. A lay panel will review their request for an EHCP before it goes to the local authority. They will have to attend mandatory mediation. They won’t have a full and free choice of placements for their child. National standards and tariffs may limit their access to the right provision and funding. Their ability even to appeal to Tribunal may be decided by the lay panel.
Another barrier is that the introduction of national standards and the consequent amendments to the SEN Code of Practice, will mean changing the law. That will require massive resources to implement, which will result in similar upheaval to 2014. This is an unnecessary change of system because much of the existing problem is not caused by the current law, it is caused by local authorities failing to apply it. This is due to lack of funding and training and external monitoring of their activities. If resources were targeted at the existing problem rather than changing the law, they would be far more likely to solve the issue of negative parental experience and lack of appropriate intervention at an early stage.
Question 22. Is there anything else you would like to say about the proposals in the green paper?
The integration of the SEND system with health and care is long overdue and welcome. The failure to view the needs of disabled CYP with SEND holistically, has been a key part of my campaigning for over a decade.
As part of the Children and Families Act 2014, The Government introduced SEND pilots which gave extended powers to the Tribunal to make non-binding recommendations on health and care provision in EHCPs. An evaluation of the pilots in 2021 showed that these extended powers resulted in better outcomes for CYP, and so they will continue.
It is ironic that the Government, having recognised that the Tribunal plays a vital role in ensuring better outcomes for CYP, will be restricting access to it under this proposed legislation.
The possibility of introducing an independent panel for parents before they could reach a tribunal is a shocking denial of justice. The proposals go so far as to suggest the lay panel may even have the authority to ‘make the binding legal judgements required to overturn previous local authority decisions’. That usurps the power of the Tribunal and is completely unacceptable.
Jane Raca 22 July 2022
Campaign for a single point of appeal from
Education Health and Care (EHC) plans, succeeds.
It took 8 years, but we finally got there...
In 2013, I made an impassioned speech in the House of Commons at a meeting of the All Party Parliamentary Party Group on Autism. I implored the Minister for Children and Families to allow parents to appeal to the SEND Tribunal over health and social care provision for their children, not just education. The Government put in place a trial which was subsequently rolled out nationwide.
After eight years and an evaluation, the Government concluded that allowing judges to make non binding recommendations on health and social care provision led to 'an increase in provision', which benefited the children. It will therefore continue with the new system.
I had been driven to write my book, Standing Up for James, to try to raise awareness of the failures of the system which was designed to support disabled children, but which instead was causing widespread suffering.
One of the biggest problems which my family had faced, was that we did not have any respite or support at home for the first five years, for a child who needed one to one care 24 hours a day. We had to battle with social services for months to get anywhere. Even when we had some support, it became clear that James could only be properly educated and cared for in a residential school. However, in order to get him into the school we had to take the local authority to the Special Educational Needs and Disability Tribunal. That Tribunal could only consider James’s educational needs, not his care needs nor the needs of the rest of the family.
He began a termly placement, but still had no support at all for the 14 weeks of the year when he came home. In order to get support and respite from social care for that 14 weeks, we had to follow internal complaints procedures, culminating in an approach to the Ombudsman. The whole process took 5 years to resolve.
When the Children and Families Bill was in its early stages, it became clear that this artificial divide between health, social care and education services would be perpetuated, even though the Bill was intended to lead to more joined up thinking. The whole disability sector was against this and I too felt strongly that this should not be allowed to happen and so began campaigning to try to get the Bill amended, to allow parents to appeal to Tribunal about all aspects of their child’s provision. I requested that copies of Standing Up for James were placed in the libraries of both the House of Lords and the House of Commons, and they were eventually referred to in debates about the Bill.
I was invited by the National Autistic Society to speak at a meeting of the all party parliamentary group on autism, about the importance of a single point of appeal from EHC plans. This was attended by the then minister for children and families, Edward Timpson, and the then shadow minister for education, Steve McCabe. The ministers conferred afterwards and the Government agreed to a pilot scheme, whereby tribunal judges could hear arguments about social care and health provision and make non-binding recommendations. When, after two years the decision was taken to roll the pilots out nationwide, I was dancing around the room!
In July 2021 the evaluation of the pilots was completed and the findings vindicated all the effort made by those in the sector. The evidence showed that parents got better health and social care provision when they raised the issues at Tribunal than if they followed non judicial routes of redress.
Jane Raca September 2021