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Children’s Commissioner Report: Waiting times for assessment and support for autism, ADHD and other neurodevelopmental conditions

The report states how children and young people’s unmet needs can tragically escalate to the point of crisis. The report emphasizes, as many other reports have, the need for providing needs led early interventions, and that by providing the right support at the right time enables children and young people to have improved outcomes.


We know that children and young people with neurodevelopmental conditions, such as Autism and or ADHD, can face several health inequalities, which are compounded by the growing wait times, which vary across regions and even within the local footprints of the commissioning Integrated Care Boards. Many families are faced with long waits and a postcode lottery for pre and post diagnostic support, with the report stating “Many children are unsupported during these waits, with little access to therapeutic interventions” and even once a diagnosis is provided the report confirmed that “Children and parents can feel abandoned by services after the diagnosis, often just receiving a letter with website links”


The NNPCF welcome the key recommendations regarding addressing both the wait times and the workforce strategy within the Government’s Child Health Action Plan. The focus on early interventions that are integrated across Health, social and Education we feel is much needed in order to support a needs led approach along with a timely assessment, outcome and/or diagnosis to ensure our Children, Young People and families receive the correct support, when they need it.


The NNPCF has been in conversations with NHSE regarding wait times for ASD and ADHD and we hope that now the new government is in place that wider strategic conversations can start to take place to ensure that the lived experience of our membership is represented.

You can access a copy of the report here.

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The National Audit Office Report: Support for children and young people with special educational needs


The National Audit Office (NAO) Report, as ordered by the House of Commons, highlights that the current SEND System is not meeting the needs of children and young people (CYP) with SEND. The report is welcome by the NNPCF and much of it echoes what our membership of 153 local Parent Carer Forums have been telling us.


It’s disappointing, but not surprising, to read that since 2019, outcomes for CYP with SEN continue to be inconsistent and the disparities in attainment between CYP with and without SEN when they school after key stage 4 has not been lessened in accordance with the DfE’s ambition.


The report is clear that too many children and young people with SEND are not able to access an inclusive mainstream education. That CYP whose needs should be met through SEN Support, are sadly not being met. This increases the number of families feeling that they need to seek an Education and Health Care plan (EHCP) and request specialist provision in order to meet their CYP needs. Whilst the report focuses on the increased number of EHCPs, the report fails to acknowledge how the reforms in 2014, increased the age from 16 under the old statement system, to age 25 under an EHCP, which naturally would impact on the number of plans within the system, which are documented within this report.


Sadly, for many families the process to get the right support at the right time for their CYP, is dependent on long waits for assessments within health services, for an EHCP to be issued, which is often outside of statutory timescales and long waits for suitable education placements to be secured, that can for many see high travel costs due to a lack of appropriate local provision. Families, as clearly narrated within this report, find the processes adversarial and impacts on their confidence within the system.


Whilst we accept that the DfE under the previous Government have taken steps to address the financial sustainability of the SEND System and improve outcomes for CYP, this report would suggest that these measures have not or will not necessarily make the much-needed changes for families and CYP to feel the impact.


We hope that this report, as with other recent publications, will strengthen the need for robust discussions that are co-produced with all stakeholders to agree a positive way forward to benefit our CYP and families. We hope that the new Government will be bold and make the much-needed changes to ensure an inclusive school system that is both accountable and funded accordingly with the skilled workforce it needs to deliver improved outcomes for our CYP.


Change cannot happen in isolation. The Department of Health and Social Care (DHSC) also needs to prioritise and resource the system effectively to ensure local health and care systems can support the needs of CYP and their families.


NNPCF suggests that whilst the government must consider its plans to ensure sustainability, the immediate needs of the families of CYP whose needs are not being met must also be clearly considered. SEN Provision must also be a priority in provision planning to ensure that local areas have sufficient mainstream, state special and bespoke provision to meet future demands. Local areas must continue to develop and thrive with so that CYP can be educated within their local communities and enable the much-needed reforms have a lasting impact.

You can find a copy of the report here.

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Co-Chairs meet with Secretary of State for Education

The NNPCF met with the Secretary of State for Education, Bridget Philipson, regarding the work of the NNPCF and Parent Carer Forums. We spoke about what is important to our families with children and young people who have Special Educational Needs and/or Disabilities (SEND). 

The NNPCF raised key themes such as ensuring there is robust accountability across the SEND System, along with creating equity across the system. It is important that all professionals and families are aware of the ordinarily available provision across Education, Social Care and Health in their local area, and that it is an equal offer nationally for all with SEND.  

The NNPCF also highlighted the importance of lived experience being integral to any planned changes with a variety of voices, to ensure changes are co-produced with families so they meet the needs of children, young people, and their families. 

The Minster reassured us that inclusion of SEND is of upmost importance to the new government and highlighted the recent move within Department for Education of SEND policy areas from its families to school’s directorate, to sitting directly with the Schools Minister, Catherine McKinnell, MP. This realignment is to support inclusion within mainstream provision, ensuring all pupils are considered in any decisions. 

We also spoke regarding the recent publications from Ofsted regarding “one word” judgments and the recently launched Curriculum and Assessment Review, which promises to look closely at the key to attainment for young people, in particular for children and young people with SEND. 

We continue to welcome our ongoing discussions with the Department for Education.  

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Meeting with Ofsted

The NNPCF met with Sir Martyn Oliver, His Majesty’s Chief Inspector at Ofsted on 12th September 2024, and were joined by Yvette Stanley, the social care lead and Lee Owston, the education lead for Ofsted.  

We welcomed the meeting with Sir Martyn to discuss the recently published Ofsted Big Listen, and how parents and carers, Parent Carer Forums and the NNPCF can be involved in the upcoming plans, ensuring that there is strong coproduction across the work.  

Sir Martyn reassured the NNPCF that there is a strong focus on the most vulnerable pupils, with a focus on support and accountability for both schools and local areas. Whilst some inspections have been put temporarily on hold, we were pleased to hear that accountability and the importance of Local Area SEND inspections remains a high priority, demonstrated by Local Area SEND inspections being continued as planned. We also discussed how Local Area SEND inspections can often highlight non-inclusive school practice but the individual school inspections in the area are rated Good and Outstanding creating a contradiction and distrust around local provisions and how this needs to be addressed.   

The NNPCF was reassured that coproduction with all stakeholders will be taking place over the next year to support the development of the report cards for both individual schools and Local Area SEND Inspections. The aim of the report cards is to provide more explicit information on schools and local areas, which the NNPCF has been assured will provide an increased focus on SEND provision, along with enabling national trends to be picked up earlier and addressed. It is therefore vital that Parent Carer Forums feedback their experiences of SEND area inspections and families experiences of school inspections to support our conversations nationally.  

Our understanding is that Local Area SEND Revisits will recommence in Spring 2025, following the anticipated publication of the monitoring handbook which will have been updated.  

We welcome the conversation and continued conversation, along with looking forward to coproducing with Ofsted.  

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Learning Disability Register

NHS England have produced a leaflet that helps people to think about whether their child or someone they care for, could be considered to have a learning disability.

This leaflet helps you think about whether your child or someone you
care for, could be considered to have a learning disability, and should be on your local GP practice’s Learning Disability Register, to help them get the help they need, including a free Annual Health Check from the age of 14

For more information on this subject, please click the link below:

NHS England » Find out more about the Learning Disability Register – leaflet

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Paediatric and Child Health Report

The Royal College of Paediatrics and Child Health have published a major new report: ‘From left behind to leading the way: a blueprint for transforming child health services in England’.

This calls on the UK government to commit to restoring health services for children in England. Across seven themes, it sets out a series of detailed and intersectional recommendations. These are intended to act as a guide to the transformational change that is needed across child health services in England. 

  1. Ensuring fair funding for children.
  2. Prioritising children in Integrated Care Systems.
  3. Supporting a sustainable child health workforce.
  4. Improving data and digital.
  5. Reducing pressure on urgent and emergency care.
  6. Reinvesting in community health services.
  7. Improving the interface between primary and secondary care.

Underpinning this is a call for ambitious action on to prevent illness and address the wider determinants of health with a child health in all policies approach. Additionally, there are two core principles in the United Nations Convention on the Rights of the Child to further help to improve children and young people’s health:

  1.  
  2. 1. Be active in how children and young people’s views are asked for, listened to and acted on (Article 12) 
  3. 2. Do all you can to implement these rights, protecting children and young people from the harm of being overlooked and forgotten in health planning (Article 4, Article 24).  

You can read more about the College’s case for change in a four-page quick read or the full report. 

The report has been endorsed by the Children and Young People’s Health Policy Influencing Group (HPIG) of which NNPCF is an active member.

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Meeting with Stephen Morgan MP

On 5th September 2024, the NNPCF, along with Dingley’s Promise (Dingley’s Promise – Homepage – Dingley’s Promise) met the Minster or Early Education, Stephen Morgan MP, to discuss the importance of SEND in Early Years. 

Minister Morgan was very much in listening mode about what changes needed to happen in Early Years and had a good understanding of what was happening in the Early Years sector. 

Amongst the many topics discussed were the following: 

  • The importance of reviewing the link between Disability Access Funding (DAF) and Disability Living Allowance (DLA).  Currently to be able to apply for DAF the family must be in receipt of DLA.  This puts significant pressure on families, and for many parent carers it is simply too early in their journey to feel comfortable making an application. Separating DAF and DLA to enable easier access to the DAF funding and ring-fencing the DAF funding would ensure more of the funds can be used to meet the needs of SEND in the Early Years.  DAF funding is already available but currently 48% (data from Dingley’s Promise) is being fully spent by Local Authorities.  
  • The importance of including health partners in Early Years especially, speech and language, occupational therapists and general practitioners (GPs) with clear pathways for families to follow.  
  • The importance of Health Visitors and how their Health Checks need to be working with the DfE Early Years toolkits and ensuring advice is joined up.  Along with supporting the increasing number of families who are concerned about SEND can find now clear information about whether their concerns are SEND related or natural development. 
  • The importance of Local Authorities mapping out the Early Years SEND Provision.  Whilst all Early Years settings are inclusive, there are staffing and financial implications, which may impact the number of SEND places available in a provision. 
  • The importance of good quality SEND training for Early Years practitioners and Primary SENDCo’s.  
  • The importance of a good transition in every aspect of a SEND Child in Early Years, particularly to a new setting and to primary school. 
  • The importance of well-trained settings and practitioners in Early Years SEND, and how this improves educational outcomes. 

We look forward to hearing what the Minster Morgan’s next steps are for SEND Early Years. 

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Joint Open Letter To Minister James Murray MP

Contact and the National Network of Parent Carer Forums (NNPCF) met the Exchequer Secretary, James Murray MP on Thursday 1st August in relation to the Chancellor’s formal announcement of Monday 29th July 2024 on the Taxation of Private Schools.

Thank you to the Parent Carer Forums who contributed their thoughts with us ahead of the meeting.

Please find an open letter to the Minister clarifying our discussion and additional concerns.

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LGA CCN ISOS Partnership SEND Report

The NNPCFs Response to the LGA CCN ISOS Partnership SEND Report – Towards an effective and financially sustainable approach to Special Educational Needs and/or Disabilities (SEND) in England. 

A copy of the report can be found here. 

The NNPCF agrees that the SEND system is in need of change, in order to for the system to be more effective and to provide strong positive outcomes for those children and young people with SEND.  Whilst the report is a thorough analysis of the key financial issues faced by Local Authorities, we feel that of the views and needs of children and young people and their families now need to be embraced in greater detail, along with wider stakeholders to ensure that change is driven forward in a co-productive way that meets needs and improves outcomes for children and young people.  We hope that this report provides the platform for starting those conversations and we welcome greater involvement with LGA and CCN moving forward. 

The recommendations within the report are far reaching and to comment on every detail of the report, would make for its own report. Therefore, we have included our overarching thoughts on key areas of the report. Overall, the NNPPCF believe this report has positive ambitions and is supportive of the needs of children and young people with SEND and their families.  However, some aspects of the report give rise to concerns, but we accept that there will be differing views on the root causes and potential solutions.  

The NNPCF statement regarding the report, follows the format of the report. 

Part 1: Key findings 

Much of the data presented in Part one of the report is known nationally and is not in dispute.  The report does cover the financial situation of the Local Authorities in detail, however, the interpretation of that data and some of the proposed recommendations do not fully consider other findings and the aims of current programmes of work, including the Change Programme or the long-term implications of the Safety Valve and Delivering Better Value.  The report makes clear that it does not seek to place blame on the “actors” within the report.  While we welcome and support this, some aspects of the of the report could be interpreted as attributing issues around financial sustainability to the views and behaviour of parent carers. 

 
 
Regarding the financial input into the system, there is a strong set of data collected from Local Authorities.  However, this data unfortunately does not take inflation into account, both in terms of funding received and the spiralling costs that are impacting every aspect of life, not just resources for SEND.   Whilst the report references the recent pandemic, we do not feel the monumental impact that this has had on children, young people and their families has been reflected in the report. 

 
 
Part Two: Recommendations 

Recommendation 1: Vision and Guiding principles. 

The NNPCF agree that there is the need for a national vision and a guiding set of principles regarding the SEND system.  Along with the ambition of a future approach to education where children and young people feel valued and capable and that parent carers views are valued and heard (rather than ignored, as the report has stated), we hope that this will go a step further and value full co-production and decision making with those whose lives will be impacted by any decisions made.  

Recommendation 2: A National Framework. 

The NNPCF agree that there could be potential benefits to a National Framework.  However, we have concerns that the proposed classifications of need will not accurately reflect the needs of an individual child or young person. The framework is also limiting as it does not take a holistic approach to the needs of children and young people. 

The framework aims to reduce the need for statutory provision and release capacity so that practitioners can spend more time delivering direct support to children and young people. We support the principal of making best use of practitioners’ time but remain concerned about any reduction of statutory entitlements for children and young people in the current environment. 
 

It is also unclear who would be responsible for establishing a national framework and governing a ‘National Institute’.    

The NNPCF are disappointed that there is no mention of co-production in this report.  Co-production is vital in ensuring that services achieve the best possible outcomes for children and young people with SEND and make the best use of available resources.   Working in co-production with children, young people and their parent carers is also essential for families to have confidence in the SEND system.   

Recommendation 3: Creating a more inclusive mainstream offer. 

The NNPCF agree with the principal of an inclusive local mainstream school system, where pupils have access to a broad and balanced curriculum and the needs of pupils with SEND are consistently met. The ambition for families to be able to have confidence in mainstream education is welcomed.  We are however concerned that there is a lack of flexibility regarding pathways and assessment that could marginalise learners with SEND.  Many of the ‘Life Skills’ offered currently by mainstream schools do not cater adequately for those with SEND and new programmes would need a greater focus on understanding how to deliver such training to a wide cohort.  Accountability within mainstream education (e.g. league tables, OFSTED Inspections, progress 8) would also need to be re-aligned to encourage and enable inclusive practice. 

An adequately resourced SEND system remains at the heart of meeting the needs of our children and young people. This report looks to review the schools’ delegated budget, including notional send funding. The NNPCF welcomes the suggestion of increased accountability on annual reporting on expenditure but are concerned that there is no recommendation to co-produce the model of additional needs funding. 

Often school buildings, including new school buildings, do not take the needs of pupils with SEND into consideration. Quiet rooms and spaces for tailored, targeted teaching to take place are necessary for mainstream schools to physically be inclusive to all. This is something that needs to be considered and addressed as important as it is to ensure a building is physically inclusive, (by way of access and space, the environment, class sizes etc.) the culture of a school is equally important in creating a truly inclusive environment for children and young people with SEND.  

There is also a need for robust provision place planning to be carried out to ensure that there are enough placements for all children and young people, including those with pupils with SEND locally.  There must be a sufficiency of transport and other support services to ensure that children and young people are able to successfully access education.  Currently, too many children and young people are placed in provisions that are a long distance from home and this impacts on inclusion in their local communities. 

Overall, the NNPCF welcomes the focus on inclusion, access to specialist support, reforming teacher training, redefining the meaning of a good school and an increase in accountability is within this report.   

Recommendation 4: Reforming the statutory framework for inclusion. 

The NNPCF agree with the principal of a statutory framework that incentivises an inclusive system. Families want accountability within the system, however there are some aspects of the report narrative that we disagree agree with.  When tribunals rule overwhelmingly in favour of families it is clear that legislation relating to SEND is not being adhered to.   We know that the decision for families to appeal to tribunal is not taken lightly. The financial, emotional and mental strain that families experience is significant and is not fully acknowledged in the report. 

The report suggests that legislation relating to SEND is impossible to implement and therefore fundamentally flawed.  The report points to tribunal outcomes as evidence of this and suggests that parental preference is not sustainable moving forward.  We do not agree with these conclusions.  At the heart of the tribunal system are children and young people whose needs are not being met and whose parent carers are using whatever means at their disposal to rectify this.  We are concerned that this is not acknowledged fully in the report. 

The report states its ambition is to “pivot away” from “individual legally enforceable entitlements”. The NNPCF find this hugely concerning. 

The NNPCF would also like clarity on the proposed replacement for the protected and legislated definition of SEND. Whilst we agree the term is broad, it is the support that sits around the definition we are most concerned with. The NNPCF suggests that to amend the legislated definition at time when there is so much contention within the system, would not build the confidence in the system that is needed, and the report clearly identifies. The NNPCF suggest that the focus should be on increasing the inclusivity of the mainstream environment, to build the confidence and then co-produce a clear and defined definition with children, young people and their families.  

Whilst moving towards the suggested learner records, it is unclear how the accountability to provide the support will work and how these documents will be quality assured which is often the issue with the current pupil profiles and IEPs (Individual Education Plans). 

Regarding admissions and enforced admission into a school, it appears to remove the right of families to choose the best school for their child(ren) and waters down their rights to appeal a placement decision.  There are also concerns about the proposed dispute resolution process, the lack of clear timelines and independent conflict resolution processes. 

Whilst a SEND system that is needs led, may result in a system of reduced diagnosis, the report does not consider that to access many adult services and benefits a diagnosis is required. 

Recommendation 5: Preparation for Adulthood 

The NNPCF welcome a review of children’s and adult services and agree with the ambitions of improved transition and preparation for adulthood.  Often systems are not aligned, adult services are not aware of these families when they turn up for support. We also know that transition into the next steps, whether it’s a new school, new classroom, college or work are stumbling blocks for many of those with SEND.  We would also suggest that more collaboration with employers is needed, so they are aware of these changes and included in this area of development. 

The NNPCF welcomes the standardisation of age in which a CYP transitions to adult services, across Education, Health and Social Care, thus addressing the variation of age ranges which currently impact on a smooth and clear transition into adulthood across a variety of services. 

However, whilst we welcome a standardised age for transition the NNPCF have concerns regarding the three defined categorises of need and the level of support that is attributed to them. How would the level of support be defined? What if a young person’s needs change during ages of 18-20, or indeed beyond for the additional discretionary support?  

It is also unclear if the rights currently extended to young people until 25 are protected. For example it is also unclear if the rights currently extended to young people until 25 are protected, for example their entitlement to an EHCP, is the reports intention that such entitlements continue? 

The NNPCF have therefore reservations over the age range and feel that it needs to be clearer and more defined. Whilst the report relates to discussions it was clear that there was no “clear cut” outcome and we feel that further discussions would be needed to make and changes co-produced with both young people and their families to ensure that suggestions in the report, meet the needs of those it intends to support.  

Overall, the NNPCF  agrees with supporting those with the greatest need, however, feel the categories may impact on the level of support some young people can access, and are concerned that the , mainstream SEND cohort are going to be disadvantaged in this recommendation and if more SEND pupils are going to be included into mainstream, how will these individuals be supported for Preparation for Adulthood? 

Recommendation 6: Realigning powers and responsibilities.  

The NNPCF agree with the ambition of this recommendation and welcome the involvement of PCFs and the voice of children and young people with SEND within the proposed Local Inclusion Partnership boards. We hope that by the inclusion of children and young people and their families, it will ensure that the reality and lived experience, is embedded into strategic discussion and will then influence and shape true co-production across the local area. 

The NNPCF also welcome a strengthening of commission across all services through a local inclusion fund, but this needs to be done in co-production with those in the local area, and which include the voice of parent carers and children and young people as equal partners.  

It is noted that within the report, the redistribution of funding streams from post 16, into the delegated budgets of providers, this is contingent on the preparing for adulthood recommendations meeting the needs of young people, of which we have reservations. Redistributing funding streams, whilst may seem simplistic the implications for commissioned providers are far reaching, with current offers attached to existing contracts and service specifications, which the report we feel has failed to give thought and time into the process to amend.  

Given the current financial pressures of both the high needs block, where there are significant overspends and with ICBs, many of whom have gone into “triple lock”, we are concerned about the “possibility” of setting up a legal framework to support the shared equity of these arrangements. Whilst the report suggests that “the goals of reform in this area are relatively simple” to achieve this would be and increase complexity in the system and doesn’t consider the overlapping and at times complex geography of Local Authorities and ICBs. We believe this could further embed post code lotteries for support, which will only serve to place children and young people at a disadvantage. 

We would also suggest further clarity regarding the commissioning of the PCFs and SENDIASS is needed. It is important that both Parent Carer Forums and SENDIASS service remain independent bodies.  We would however, like to see both being consistently jointly commissioned by Local Authorities and ICBs. 

Whilst we understand the purpose of this report is to redefine support to ensure it is cost effective, we remain concerned about the implications this will have on young people.   

Recommendation 7: The role of the independent sector. 

The NNPCF agrees with the ambition laid set out.  The independent sector has grown immensely over the last 10 years, for a variety of reasons, including lack of local provision planning and where there has been a reduction in the ability of mainstream schools to meet the needs of the children and young people.  

The cost of the independent sector is not disputed. However, the independent sector frequently offers a bespoke offer of care, which can involve a substantially higher level of intervention, support and personal care for children and young people, often whom may have complex needs. That level of bespoke care may not be routinely commissioned and accessed within mainstream or specialist provision in the local area.   

Whilst we accept that the issue of an independent placement can become the subject of debate between parent carers and the Local Authority. We must, however, understand that this is often to a due lack of strategic long-term planning, lack of investment from central government to build suitable and inclusive schools, and schools which do not operate within inclusive practice, so an independent placement is often the only place that can meet a child or young person needs.  

We are concerned that to remove a judicial body which can order such a placement could mean that children and young people are placed in settings that are unable to meet need. and the longer term harm this may cause the child.. We would strongly advocate that the sustainability and confidence in the system must be created ahead of any consideration and consultation, that included the wider public, of removing the judicial process.  

The NNPCF does however fully support the endeavours of this report in which it clearly states that independent settings should not be able to profit though the provision in which offers.  

Recommendation 8: Developing a national workforce strategy. 

The NNPCF agrees with the rationale, ambition and the proposal of this recommendation.  This is featured in the SEND AP implementation plan work. The Change Programme Partnership has not fully tested the changes that it needs to and therefore the direction of travel has not been fully established. 

Workforce was an issue pre-covid and continues to be an ongoing issue. Workforce retainment is also a concern, along with those in rural areas not being able to recruit, as potential new recruits cannot afford to live in certain areas. It is not just about training; it is also about retaining and developing good workforce who are inclusive and deliver well for not only SEND pupils but all pupils. 

In conclusion, whilst there are many merits to this report, the NNPCF believe that this is an oversimplification of the issues faced by the SEND system and steps needed to resolve those issues.  We also do not feel that a system can change without full co-production between all stakeholders, including the voices of the families, children and young people. We are deeply concerned about the suggested timelines and believe that the time to influence and implement change has been vastly underestimated.  Whilst this report is a start, more information and discussion are required to create a comprehensive action plan and to understand the impact of the improvement and innovation programmes currently underway. 

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NCMD Report: Learning from deaths: Children with a learning disability and autistic children

The NNPCF worked with other stakeholders to have input into a new report. The report draws on data from the National Child Mortality Database (NCMD) to investigate deaths in children with a learning disability and autistic children, and to draw out learning and recommendations for service providers and policymakers.

The report has now been published and you can view it in full here: https://www.ncmd.info/publications/child-death-learning-disability-autism/