Latest government prevalence data estimates that 900,000 children and young people in the UK have a special educational need and/or disability (see graphics). However, a 2010 study by Blackburn et al estimated the figure to be 950,000 (see research evidence).
Department for Work and Pensions data shows the most common childhood disabilities are social and behavioural, followed by learning disability and conditions affecting "stamina, breathing and fatigue". There are significantly different prevalence rates of conditions for males and females (see graphic). For example, boys are nearly twice as likely to be diagnosed with social and behavioural problems, but the rate for mobility problems is seven percentage points higher in girls.
Rights and responsibilities
Under the Children Act 1989, local authorities have a duty to provide a disabled child with support including care at home, aids and adaptations, short break services, holiday play schemes, and help with travel. Eligibility for help is assessed by a social worker. If a child qualifies for help, they can receive council services or accept direct payments to buy services themselves. Parents may also be eligible for additional support through the child tax credit system and disability living allowance for children.
Through the Equality Act 2010, it is illegal for schools and other education providers to discriminate against disabled children, such as by refusing to admit a disabled child because of their disability, or preventing them accessing parts of the school because it takes longer to get there. Schools have to make "reasonable adjustments" for disabled children such as adding ramps and providing specialist teachers or equipment.
The Children and Families Act 2014 introduces a raft of new measures for children and young people with special educational needs and disabilities (SEND), the bulk of which became law on 1 September 2014. Children and families minister Edward Timpson described the reforms as a "landmark moment in improving the lives of children with SEND and their families".
Key elements of the act include:
- Replacing statements of special education needs with education, health and care (EHC) plans to co-ordinate support for all children and young people aged up to 25.
- The introduction of personal budgets to carry out EHC plans, giving children and families greater control over their care and support.
- A requirement for councils to publish a "local offer" containing details of all the support available to disabled children and young people and their families in an area.
Implementation of the SEND reforms
The Children and Families Act requires all children and young people up to 25 to be moved from statements of SEN to EHC plans by April 2018. The act presents practical and financial challenges for local authorities. It requires them to operate two systems until all children and young people are transferred from SEN statements, and develop a more co-ordinated way of working across health, social care and education services and professionals (see expert view, below).
To help fund these changes, the Department for Education set aside two different pots of money to support families and local authorities through the process: £30m to recruit and train 1,800 independent advocates from the voluntary, private and community sectors to help advise families on how to challenge decisions made by councils on funding and services; and £70m shared out between 152 English authorities to put in place the service infrastructure needed to deliver the reforms.
Additional tranches of funding have followed these initial allocations, reflecting the scale of the task.
Announcing the additional funding for 2017/18, Timpson recognised there are still "challenges to overcome" with implementing the reforms. As of January 2016, less than one in four (46,555) children and young people requiring to be transferred had actually done so. There were 74,210 children and young people on EHC plans at January 2016, with 182,105 still on statements of SEN.
The next round of data has just been collected by the DfE and will be published in May.
When surveyed by the DfE in autumn 2016, 86 per cent of authorities reported they were "moderately confident" of meeting the transfer deadline. However, the advocates of those receiving services are less positive - just 65 per cent of Parent Carer Forums were "moderately confident" of the deadline being met.
The initial signs are that parents and children are positive about the reforms. A small-scale DfE survey of 300 families found that two-thirds said EHC plans had led to their child getting the care and support they needed. A larger study measuring the experiences of 13,000 families will be published in March.
Only children with more complex conditions will be allocated an EHC plan, which identifies education, health and social care needs and sets out the additional support to meet those needs (see analysis). Parents of a disabled child, or a young person aged 16 to 25, can request an EHC plan assessment, as can some professionals including health practitioners, teachers and family friends. When making an assessment, the local authority considers reports from a child's school or early years setting, doctors' assessments, and parental views. Under the legislation, councils should inform parents of a decision within 16 weeks of an application and provide the final plan within 20 weeks.
Parents can apply to the Special Educational Needs and Disability Tribunal to challenge an authority's decision not to carry out an assessment, not to create an EHC plan, the type of support offered in the plan and the setting being proposed to deliver it.
Where a child has been issued with an EHC plan, parents should be able to access personal budgets enabling a greater say in how services are delivered. This could take the form of parents receiving direct payments to buy and manage services themselves, parents deciding how the school and council spend the money, or third party arrangements where someone manages the money on the parents' behalf.
SEND code of practice
Alongside the Children and Families Act, a new code of practice for use by professionals working with SEND children and young people aged up to 25 was introduced. It covers those working in local authorities, including social care, housing and employment support staff; head teachers, SEN co-ordinators and school governors; most early years providers; NHS commissioning boards; and youth offending teams.
Chapter one of the code sets out the principles underpinning it, particularly the need for services to incorporate the views of service users and their families in decision making, planning and commissioning processes.
Chapter two covers local authorities' requirements to provide high-quality and impartial information and advice services for young people and families. It also outlines families' right to access an independent advocate to support them through the assessment process.
Integrated working across health, social care and education is a key principle of the code. Chapter three explains the duties on councils to develop joint commissioning arrangements across SEND provision, including those not on an EHC plan, with this being reflected in the "local offer" for services.
Chapter four outlines councils' duties to provide a local offer setting out the support they expect to be available for children and young people with SEND in their area. It must also cover provision outside the local area that children use. In addition to setting out what is available locally, the offer aims to make provision more responsive to parents' needs and local providers' capabilities.
Chapter five focuses on how childcare providers can identify a child who has (or probably has) SEND, how to communicate this to parents and the council, and ensuring there is sufficient expertise to support parents and meet the child's needs (see practice example).
Chapter six of the code sets out in detail the requirements on mainstream school settings. This covers monitoring arrangements, both in identifying needs, and progress and development, ensuring SEND children can participate fully, and designating a SEND lead in each school. Schools must also publish a SEND policy on their website, identify a governor to lead on SEND, and incorporate teaching SEND children into performance management arrangements.
In the 2015 Autumn Statement, it was announced that the education services grant (ESG) - worth £1.02bn in 2015/16 and £500m in 16/17 - would be scrapped from September 2017 to be replaced by a much smaller pot of money called the central school services block. The ESG was used by local authorities to put in place additional support for vulnerable groups of young people to remain in education. For SEND children this could be funding sessions with an educational psychologist, literacy specialist or speech therapist. With less money to pay for this support, education campaigners are concerned that schools will struggle to close the attainment gap between SEND children and young people and peers.
The government has also proposed changes to the "high needs" element of the Dedicated Schools Grant (DSG), which councils receive to pay for the additional teaching support SEND pupils require. Ministers say a new national funding formula set to be introduced from September 2018 will see a fairer distribution of high needs funding across the country, although unions have warned it could result in some councils reducing provision.
Standards of provision
Over the past year, Ofsted and the Care Quality Commission have been jointly inspecting SEND services in local authority areas. So far, 20 inspections have been carried out with 17 reports published. Unlike most Ofsted inspections of education and social care provision, the SEND inspections do not give an overall rating of services. However, the general trend has seen inspectors reporting positive findings, with progress in implementing SEND reforms particularly highlighted in some areas. For example, Plymouth Council was praised for its work on EHC plans, with the number of children it had transferred onto plans from SEN statements at twice the national average (see practice example). The London borough of Hillingdon was praised by inspectors for its "ambition to use personal budgets as the vehicle to a more creative approach to care packages for children and young people".
Of the 17 inspections published so far, four have been found to have sufficient weaknesses and require them to produce "written statements of action", detailing how problems will be speedily addressed. Common deficiencies have been around poor monitoring of outcomes and insufficient focus on the impact that provision will have; lack of cohesive joint working between agencies; and poor-quality local offers.
Young people's outcomes
The 2014 reforms were designed to increase the focus that all services working with children and young people with SEND have on improving outcomes at key transitions - helping childcare providers prepare children for school; ensuring councils put in place support for primary schools to sufficiently identify and meet children's learning needs; and for secondary schools to actively prepare young people for further education or work.
Under the reforms, children on SEN statements or EHC plans should have a transition plan in place from year 9 detailing arrangements after education. This will be vital as destination data is increasingly used to assess how effective a school is in preparing pupils for the future. Some councils have already developed dedicated internship programmes for SEND young people. For example, Gloucestershire Council has worked with a local college and employers to provide six-month work experience placements, which have led to a marked rise in the numbers of SEND young people that have gained employment (see practice example).
Such initiatives must become standard to address the above-average proportion of disabled young people who at not in education, employment and training at age 19. There is also a disproportionately high number of young offenders with an SEN in youth custody. Projects such as Achievement for All's SEND Bubble are aiming to raise the recognition and understanding of these issues in the youth justice workforce (see practice example).
This focus on outcomes has also led to inquiries into the wellbeing of the 2,000 children and young people with complex learning disabilities living in NHS in-patient and residential special schools (see ADCS view, below). The Department of Health Review found policies and services lacked co-ordination, with children becoming lost in the system. The DfE is conducting a follow-up review of provision in residential special schools.
ADCS View: Increase focus on inpatient care
By Dave Hill, president, ADCS
The Department of Health (DH) recently published a report on the care of children and young people with learning disabilities and/or autism and behaviour that challenges. Dame Christine Lenehan, director of the Council for Disabled Children, led this review and found that a lack of accountability across a fragmented care system was depriving this relatively small but vulnerable group of children of their right to receive a suitable education, be part of a community and enjoy normal family life.
Much like other high-cost, low-incidence services, the current geographical spread of assessment and treatment units no longer reflects the needs of children and young people with complex needs. Sadly, such placements are often a last resort in response to the limited specialist community services available to support this cohort of children to stay in their community. This cannot be right and we hope that the Department for Education and DH will work together with local authorities and health services to find a way forward.
Our collective aim must be to ensure that these children and young people are well treated, supported and cared for, and that more emphasis is placed on services that support children earlier and in the community so that they do not need to live miles away from their families long-term in inpatient wards. This would require significant additional resource and a commitment from central government - there is no quick fix.
The design and delivery of wider special educational needs and disability (SEND) services is in the process of being transformed.
The Children and Families Act 2014 increased the drive to join up and plan holistically to meet education, health and care needs. It makes sense for agencies to come together to harness our joint efforts to ensure we're all working with children, young people and their families towards the same goals.
Although the SEND reforms were introduced in 2014, more still needs to be done to ensure a cohesive relationship between health, social care and education services, both centrally and locally, if we are to appropriately meet the unique needs of this group.
Local authorities are committed to ensuring the best possible outcomes for children with complex needs and behaviour and this report shines a welcome spotlight on the need for a system better designed to support this vulnerable cohort. Given that very few children with such high level needs live in each local authority, it can be difficult to share learning and spread best practice. The development of a new model of care to meet their needs makes sense, as does the need for strong national leadership and a clear vision for the treatment of children with learning disabilities and/or autism and behaviour that challenges.
Many children and young people in 52-week residential school placements have similar needs to those in assessment and treatment units. These are the same children, and we need to understand more about the outcomes they are achieving.
Expert View: Partnerships are key to deliver reforms
By Christine Lenehan, director, Council for Disabled Children
The coming year provides significant challenges to local authorities as they work to convert all SEN statements to education, health and care (EHC) plans by the end of March 2018. The level of challenge means that local areas will be head down in the depth of the reforms, and if they are not careful will lose the bigger picture, and in so doing the purpose of the reforms.
I am really keen that in the midst of this, however difficult it is, we keep that vision, because at the heart of the reforms what matters are partnerships: between professionals and parents, different sectors and professionals themselves. Austerity and challenging workloads puts these at risk, yet when done effectively we see really strong relationships develop. Effective working between parent-carer groups and professionals is evidenced by an underpinning of mutual respect, by confident professionals and a real understanding of the art of the possible. These seem to be the baselines that enable co-production to happen, and when it does it makes real differences.
Developing effective joint commissioning between local authorities and their health partners is challenging. We are seeing really good examples where protocols have been developed, so everyone understands for example the healthcare advice going into plans and how continuing care funding works. We are also seeing some very slow progress where professionals struggle to let go of entrenched views and budget lines even when these undermine the outcomes they are aiming for.
The divide within the local authority between education and social care is also a challenge. Some of that remains based on misunderstandings. For example, not every child with an EHC plan will need a social care assessment, but all will need social care advice which is proportionate; this might be about explaining why a child is not known and being clearer about local eligibility thresholds.
Some of this goes back to terminology. If we are not careful the SEND reforms will become known as the education reforms, and the accountability is assumed to be held within education teams, when actually they are the education, health and care reforms. As one local authority colleague tells me often, "disabled children are everyone's business". When we get that, the real spirit of the reforms comes alive.
This article is part of CYP Now's special report on special educational needs and disabilities. Click here for more