Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across health, social care and education

Why the committee made the recommendations

There was moderate-quality qualitative evidence that:

The committee's understanding of the special educational needs and disability (SEND) code of practice is that it highlights the importance of supporting children and young people to achieve their ambitions. Based on the committee's experience, cultural backgrounds and preferences can impact on the views, life goals and ambitions of individuals, and so this should be taken into consideration to provide truly person-centred care.

There was moderate- and high-quality evidence that parents and carers felt positive when given the chance to provide their views, and that they felt negative when their views were ignored.

In the committee's experience, children and young people with the most complex needs may not be able to actively participate in planning or decision making. In this situation, taking into account the views of the people who know the child or young person best will help to ensure that the child or young person's perspective is fully represented.

Support needs are individual to each child or young person, and not everyone with the same diagnosis will need the same support. In the committee's experience, this is sometimes overlooked, and they made a recommendation to remind practitioners of this point.

The Children and Families Act 2014 requires arrangements to be made to provide the information and support that is necessary to enable children, young people and parents to participate in decisions. There was moderate-quality qualitative evidence that disabled children and young people and their families and carers value a person-centred approach. Despite this, in the committee's experience, children and young people are often not invited to participate in meetings where decisions are made about their support and are not actively included if they do attend. In the committee's experience not all children and young people want to, or are able to, attend meetings. However, it is still important to get their input in other ways to facilitate their participation in decisions.

Keeping a record of how children and young people participate, and their contributions, can help to keep practitioners accountable.

The qualitative evidence highlighted multiple benefits from involving children and young people in their care and support:

In the committee's experience, it is important to find out which family members need to be involved (for example, in situations of family breakdown). They made a recommendation to cover this, so that practitioners do not make assumptions about family roles and structure.

There was moderate-quality qualitative evidence that drawing on the experience and expertise of families and carers would improve knowledge of the child or young person's needs. This is important, because there was also qualitative evidence of negative consequences when the child or young person's needs are not well understood.

Moderate-quality qualitative evidence showed that it is important to focus on the views of the children or young person, because these can differ from the views of their parents. This can be difficult to do. In the committee's experience, disabled children and young people with severe complex needs may need specialist support to participate, and their parents and carers need encouragement and support to help their child express their views.

In the committee's experience, and in light of the moderate-quality qualitative evidence previously discussed, it is important to regularly ask children and young people and their families and carers if they are satisfied with how they have been involved in decisions about their support, so that involvement is beneficial and not just tokenistic. And when children and young people are not satisfied with their involvement, it is equally important to find ways to address their concerns. The committee were not able to specify a time frame for doing this because it would depend on the services and support being received.

There was moderate-quality qualitative evidence that children and young people wanted practitioners to use the same approaches that their families and carers had been using to care for them at home. The committee agreed that this consistency was important if the approaches used have been beneficial. They also agreed that it was important to avoid practices that had been used in the past by families and found not to work well.

There was no evidence on the effectiveness of telehealth or virtual platforms for supporting disabled children and young people with severe complex needs. Therefore, the committee made a recommendation for research in this area.

How the recommendations might affect practice

Practitioners will need more time, for example for discussions with children and young people and their families and carers to get their views. However, if practitioners spend more time getting these views, families are likely to have fewer queries, complaints and problems, resulting in time savings later on.

Return to recommendations

Why the committee made the recommendations

There was low-quality qualitative evidence that children and young people and their families and carers appreciated when practitioners adapted their communication styles to suit the topic of conversation, and moderate-quality qualitative evidence that non-judgemental and non-directive communication was valued. Based on their experience, the committee agreed that practitioners do not always deal with sensitive conversations effectively and that it was important to prompt practitioners to be empathetic and supportive. This style of communication will help to address the family's feelings and help them to process the information they receive.

Low-quality qualitative evidence also showed that a flexible approach to communication was important, taking into account the child or young person's age, developmental level and communication skills. Although this evidence was low quality, the committee were confident that having a flexible approach was necessary to enable children and young people to express their views. Local authorities also have a duty under the Children and Families Act 2014 to have regard to the views of disabled children and young people and those with special educational needs.

In the committee's experience, finding the child or young person's preferred communication formats is particularly important, because this group is more likely to communicate differently and to use communication aids.

Some children and young people have a communication passport. In the committee's experience, practitioners can use this to learn about a child or young person's communication preferences without having to ask the family to repeat information they have already provided.

There was moderate-quality qualitative evidence that language barriers made it difficult for parents to find out about available services, and that more support was needed to help them understand and access support that was available. In the committee's experience parents and carers may also have disabilities or other problems that make it more difficult for them to communicate with practitioners and understand information.

There was qualitative evidence on communication formats and providing information:

The committee agreed that it is important to provide enough up-to-date information, support and advice to allow people to make more informed decisions. Based on the qualitative evidence and their experience, they highlighted areas where children and young people and their families and carers commonly wanted more information.

The recommendation on directing children and young people and their families and carers to sources of support and advice is based on:

In the committee's experience, practitioners providing information on peer support groups would have a professional duty of care to make sure that any sources of support they provide are quality-assured.

Moderate-quality qualitative evidence indicated that children and young people did not receive the level of support or involvement that they had expected from services. The committee agreed that practitioners needed to find out what expectations people had, in order to provide the support they wanted (if possible) and help them to understand what services can do. When it is not possible to meet people's expectations, it is also important to explain the reasons for this and explore alternatives.

How the recommendations might affect practice

Practitioners might need more time to communicate with children and young people (depending on their preferred communication format) and their families and carers, and to find out about their expectations. This could mean that some more time is required for preparation, and consultation times are longer, which could create a resource impact for services. However, if practitioners spend more time helping children and young people to communicate and understand what services can do, they are likely to have fewer queries, complaints and problems, resulting in time savings later on from practitioners not having to address these. Training may be needed if the preferred communication method requires specialist knowledge.

Services across education, health and social care will have to establish processes to share information and to allow more coordinated and joined-up working. Interagency training may also be needed, to ensure that practitioners understand relevant policies and processes and the role of other practitioners and services.

Return to recommendations

Why the committee made the recommendations

Moderate-quality qualitative evidence indicated that parents and carers had differing views about involving children and young people in decisions about their care. Some parents and carers felt that participation was inappropriate for their child because of their age, or the nature of their special educational need or disability. Other parents and carers thought it was important to fully involve their child. The Children and Families Act 2014 requires local authorities to provide the information and support necessary to enable children, young people and parents to participate in decisions. As some of these decisions would take place during practitioner-led review meetings, the committee felt strongly that children and young people should be present at these meetings. However, given the concerns of parents and carers and the qualitative evidence that meetings can be intimidating for children and young people, they agreed it would be better to ask them how they would like to be involved.

Low-quality qualitative evidence showed that children and young people are better able to communicate their views if they are given help to understand their options and prepare for meetings. In the committee's experience, if parents and carers discuss meetings with their child in advance, they can prepare in a more relaxed home environment. This also allows parents and carers to better understand their child's views in advance of the meeting.

These recommendations align with the sections of the Children and Families Act 2014 that cover providing the information and support necessary to enable children, young people and parents to participate in decisions. In addition, the committee's understanding of the SEND code of practice is that it recommends including time to prepare for discussions and meetings.

The committee also recommended helping parents and carers to complete documents before meetings because in their experience this can be difficult and confusing, and meetings may be dominated by completing paperwork if this has not been done in advance.

In the committee's experience the physical accessibility and cost of attending meetings can cause problems for children and young people and their parents and carers, so practitioners need to check this in advance.

In the committee's experience, children or young people are more likely to be motivated to participate in meetings if the issues being discussed are ones that are important to them. Therefore, it is important to get this information ahead of meetings. It is also crucially important that children and young people are able to meaningfully participate in decisions about their care and support, and this is one way to achieve this.

Qualitative evidence showed that children and young people had various levels of ability that affected their level of involvement and understanding. The committee agreed it was important to establish the age, communication ability and circumstances of the child or young person in advance of meetings, to ensure that they can meaningfully participate.

There was moderate-quality qualitative evidence that:

Based on this evidence, and their own experience, the committee highlighted ways that the structure and content of meetings could be improved (for example, having meetings in a place where the child or young person feels comfortable). The committee were confident that these recommendations would enable children and young people to participate more effectively in meetings and understand what is happening – both of which are key to their involvement in making informed decisions.

In response to moderate-quality qualitative evidence that practitioners do not always take a person-centred approach to meetings, the committee recommended considering the use of person-centred planning tools. In their experience, these tools help ensure that planning is based on information from the child or young person about their needs, wishes and what is important to them. This stops practitioners from making generic assumptions and taking prejudiced attitudes towards the child or young person as a result of their condition. These tools also focus on developing a plan to deliver the outcomes desired by the child or young person. Using a person-centred approach is specified in the SEND code of practice as a way to ensure that children, young people and parents are involved in all aspects of planning and decision making in the EHC needs assessment and planning process.

In the committee's experience, disabled children and young people with severe complex needs may need more time to process information and communicate their views. They may also give very brief answers to questions, and may need encouragement and additional time to expand on these. To ensure that they can meaningfully participate in meetings, the committee believed that children and young people needed adequate time to express their views and take in information, and practitioners needed to check that they have understood the information they are given.

Children and young people also need to be supported to communicate using their preferred method. Identifying their preferred communication method is particularly important, because this group is more likely to communicate differently and to use communication aids. In the committee's experience, children, young people and their families and carers benefit if meetings are recorded, because this gives them more time to process information.

There was moderate-quality qualitative evidence highlighting the importance of respecting children and young people's rights to privacy, and that attending meetings with large numbers of professionals can be intimidating. Therefore, the committee made recommendations to reflect this.

There was moderate-quality qualitative evidence that agreeing actions in front of other practitioners and parents improved accountability and made it more likely that practitioners would follow through on agreed actions.

The committee's understanding of the Children and Families Act 2014 is that it requires education and training provision to be integrated with health and social care provision. However, moderate-quality qualitative evidence showed that practitioners are often not collaborating effectively and either do not attend interagency meetings or do not prepare for meetings in advance. In the committee's experience, it is crucial that practitioners who know the child or young person and are involved in their support make all reasonable efforts to attend meetings. These practitioners need to come from all services involved, in order for the support provided to be fully integrated. However, the committee acknowledged that this may not always be possible. They used their experience to highlight:

The committee believe that siblings and friends have a different perspective to the practitioners caring for a disabled child or young person with severe complex needs. This different perspective can improve the practitioners' understanding of the child or young person, and can demonstrate strengths and interests that the practitioners have not observed. This enables a broader view of what the child or young person is capable of, so practitioners can make better judgements about their future abilities and adjust outcomes accordingly. Based on this, the committee agreed that children and young people should have the opportunity to invite siblings or friends to share their views.

How the recommendations might affect practice

Practitioners might need more time to plan how to involve children and young people in discussions and meetings. Meetings may also need to be longer, with more breaks, potentially taking more time. However, this should result in children and young people being able to more effectively participate and engage in discussions and decisions about their care and support, saving time later on by leaving fewer problems to deal with. Engagement with care will positively impact their care and outcomes and will outweigh any additional costs. In addition, if care is not person-centred, children and young people may end up with support that does not meet their needs. This may cost services much more further down the line.

Holding review meetings outside of a school day might result in health and social care practitioners working alternative hours, and schools will need to negotiate patterns of annual directed time flexibly, including allowing teachers to use their planning, preparation and assessment time if meetings have to be held outside of the school day.

Services that want to record meetings may have to buy equipment to do this. However, the recommendations allow them to use written records instead if needed.

Return to recommendations

Why the committee made the recommendation

There was moderate-quality qualitative evidence that using a consistent approach when interacting with children and young people was beneficial, in terms of making services more predictable across education, health and social care. This aligned with the experience of the committee that interacting in a consistent way helps children and young people know what to expect and feel safer and more confident in their interactions with services, so they made a recommendation in support of this.

How the recommendation might affect practice

Services across education, health and social care services will have to share knowledge about the child or young person's preferences, such as method of communication, the way they like to be addressed, how they express agreement or disagreement, and positive behaviour support, so that all practitioners can use this information consistently.

Return to recommendation

Why the committee made the recommendations

There was moderate-quality qualitative evidence that parents did not always feel comfortable making decisions about their child's care, because they sometimes lacked the knowledge and expertise to do so. The committee believe it is very important for children and young people and their parents and carers to be involved in decision making as much as they are able to, so they made a recommendation in support of this. This recommendation also aligns with the Children and Families Act 2014.

In some situations, children will be unable to respond with intentional communication. The committee wanted to ensure that practitioners still tried to identify their preferences in these situations, to ensure their care and support is appropriate and to meet the requirement in the Children and Families Act 2014 to have regard to the views of disabled children and young people and those with special educational needs.

The SEND code of practice states that the views of parents must not be used as a proxy for the views of the young person. However, the committee agreed that this is not consistently done in practice. In particular, members of the committee who had been through this process themselves as young people explained that they were sometimes ignored, with practitioners assuming they did not understand and primarily addressing their parents.

The SEND code of practice briefly covers what to do when there are disagreements between parents and their children. There is also other relevant legislation and guidance on consent (such as the Mental Capacity Act and guidance from professional governance organisations). However, the committee are aware that practitioners need more guidance, as issues around decision making are complicated and practitioners are not always well informed in this area. The committee made recommendations to help practitioners when disagreements between parents and children or young people cannot be resolved, or when there are capacity issues.

How the recommendations might affect practice

The guidance in this area will make practice more consistent. Practitioners might need more time to communicate with children and young people, provide them with information, and help them formulate their views. Additional time may also be needed for getting the views of parents and carers, resolving disagreements and reaching shared decisions. However, if practitioners spend more time helping children and young people to communicate, they are likely to be more engaged with the process and have fewer queries, complaints and problems, resulting in time savings later on.

Return to recommendations

Why the committee made the recommendations

There was moderate- and high-quality qualitative evidence that:

The committee agreed that information sharing does not always happen effectively and that concerns about confidentiality, privacy, consent and security can have an impact. They therefore made recommendations to promote effective information sharing and address the concerns highlighted by the evidence.

The committee noted that while individual services have electronic patient record systems, there is no interagency record system across education, health and social care. This kind of system could be very useful, but it would be very expensive to develop and there would be data protection issues to consider. Therefore, the committee agreed that they could not make a recommendation in support of a shared electronic patient record system. Instead, they recommended that services work actively to ensure that other services can access relevant information when needed.

One specific area of information sharing highlighted by moderate-quality qualitative evidence was the development and sharing of behaviour management plans. The committee did not make a recommendation specifically on behaviour management plans, because not all disabled children and young people with severe complex needs will need a behaviour management plan. However, they agreed that when any specialised care plans have been made, these should be shared with the child or young person and their parents and carers, and all practitioners working with them. This will improve practitioner knowledge and understanding of the child or young person's needs.

How the recommendations might affect practice

Practitioners might need a little more time to find out about the information sharing preferences of children and young people and their families. Services across education, health and social care may need to establish processes to share those preferences more effectively, if they have not already done so. Effective information sharing will ensure that children and young people and their families and carers do not have to repeat the same information to multiple practitioners, which can be distressing. Ineffective information sharing may lead to children and young people being provided with support that does not meet their needs and result in low satisfaction and complaints. This may cost services much more further down the line.

Return to recommendations

Why the committee made the recommendations

There were only a few small studies in this area. Most of these studies focused on children and young people with autism, were very low quality, and reported on waiting times only. The committee did not feel the evidence could be generalised to the much wider population covered by the guideline and subsequently made recommendations based on their knowledge and experience.

In the committee's experience, emotional and mental health needs can go unrecognised and undiagnosed, because they are often obscured by the other needs of disabled children and young people with severe complex needs.

In the committee's experience severe complex needs and disabilities are normally first identified by health services. If the child is under compulsory school age, section 23 of the Children and Families Act 2014 requires health services to:

This requirement only applies to children under compulsory school age, but the committee agreed to cover all children and young people in the recommendation because this process is helpful whatever age special educational needs are identified.

In line with their understanding of the SEND code of practice and the requirements of the Children and Families Act 2014, the committee also recommended directing families to SEND Information, Advice and Support services and the SEND Local Offer for their area. In the committee's experience this is not always done, and can result in parents independently sourcing inaccurate information. To ensure that children and young people receive the support they need, the committee agreed on the importance of linking health services up with education and social care services as soon as possible. They highlighted that appropriate consent to share data is needed for this.

Sometimes severe complex needs and disabilities are first identified by education services. In line with the recommendations for health services, the committee made recommendations for education services on involving health and social care services and starting discussions with children and young people and their families and carers. They also recommended informing parents and carers about support organisations in the SEND Local Offer, and directing them to SEND Information, Advice and Support services, in line with their understanding of the SEND code of practice and Children and Families Act 2014.

Based on their experience, the committee made a recommendation on referrals for social care assessment for family support. The reasons for these referrals are often unclear, particularly around the emerging needs, and this can delay social care involvement and provision of support for the child or young person. The committee felt strongly that such preventable delays need to be avoided and were confident that including the reasons for the referral (including the emerging needs) would resolve this. They also agreed it was important to include any barriers to engaging with healthcare services in the referral to social care service, because in their experience families on low income may not be able to afford to travel to attend all health appointments, or be able to afford the equipment needed to attend appointments remotely. Including such barriers in the referral should result in potential solutions to this issue being explored.

Low-quality qualitative evidence showed that families can be reluctant to engage with social care services because of fear and perceived stigma. The committee agreed that families can be confused by the difference between child protection social services and family support services, and made a recommendation to address this.

In the committee's experience, disabled children and young people are at increased risk of vulnerability, abuse and neglect. However, it is often incorrectly assumed that if the child or young person has a social worker from a disabled children's team, then this individual will pick up any safeguarding issues and there is less of a need to report concerns. The committee were confident that making a recommendation on the action needed if a safeguarding concern is identified would correct this misunderstanding.

How the recommendations might affect practice

Professionals might need more time to assess the needs a child or young person may have, and to share these with other services. They might also need more time to explain the education, health and care needs assessment process to children and young people and their families and carers. However, if practitioners spend more time on this, there will likely be fewer queries, complaints and problems, resulting in time savings later on.

If practitioners spend more time thinking about what support children and young people need from other services, services may start communicating with each other sooner and there may be fewer delays in making referrals. Practitioners may also make a small number of extra referrals to other services, because they have better knowledge of other agencies that can support the child or young person and their family and carers.

Return to recommendations

Why the committee made the recommendations

There was low-quality qualitative evidence that families and carers often felt that children and young people had to reach a crisis point before an EHC plan was considered necessary. The committee were confident that encouraging services to explain the process to families when special educational needs are first suspected should help to prevent children and young people reaching a crisis point. While the SEND code of practice already contains this information, the committee agreed that it would be more accessible if individual practitioners could provide it.

There was low-quality qualitative evidence that some practitioners felt like they were pressured to not apply for EHC plans because of a lack of funding, even though this would be a breach of the legislation. In the committee's experience this risk should be reduced if local authorities explain that an EHC needs assessment should be requested based on a child or young person's needs.

There was low- and moderate-quality qualitative evidence that access to services sometimes depends on the child or young person receiving a particular diagnosis. This excludes some disabled children and young people from support, because they can have severe complex needs but not have a specific, diagnosable health problem. While the committee's understanding of the SEND code of practice is that it allows local authorities to develop criteria to help decide if an EHC needs assessment is needed, they must be prepared to depart from these criteria if there is a compelling reason to do so. The SEND code of practice also specifies that '…local authorities must not apply a "blanket" policy to particular groups of children or certain types of need…'.

There was moderate-quality qualitative evidence that parents felt a need to constantly fight for the support their children needed, as support was not always provided if they did not arrange and manage things themselves. The committee agreed that families should not be responsible for managing processes (in particular, they should not have to manage the EHC needs assessment and EHC plan process themselves), and that practitioners should support families with this.

How the recommendations might affect practice

Practitioners may need more time to explain the EHC needs assessment process and support families through this. However, if practitioners spend more time on this, families will likely have fewer queries, complaints and problems, resulting in time savings later on. It should also help prevent children and young people from getting to a crisis point, which is detrimental to their quality of life and costly to address.

More disabled children and young people with severe complex needs may be able to access services earlier if they are not excluded for not having a specific diagnosis. Similarly, if parents and carers have a better understanding of the EHC needs assessment process, they may be more likely to request an assessment and more children and young people may be accessing services.

Return to recommendations

Why the committee made the recommendations

There was moderate-quality qualitative evidence that children and young people and their families and carers did not understand the EHC needs assessment process. They also experienced a lack of transparency around how decisions about EHC needs assessment were made, the timings of reviews, and the processes for appeals and complaints. Explaining the process to people helps them to participate and reduces uncertainty. The 20‑week period specified in the recommendation for the EHC plan process is taken from the SEND Regulations 2014.

In the committee's experience, many EHC plans are not produced within the statutory timeframe and children, young people and their parents and carers have to seek updates and information about progress. The committee made a recommendation to address this issue.

There was moderate- and high-quality qualitative evidence that:

Based on this evidence, the committee made recommendations to ensure that children and young people and their families and carers are better informed about what services are available while they are waiting for a needs assessment. The committee also noted, based on their experience, that children and young people and their families and carers are not always asked for their views as part of the EHC needs assessment. This is required by the Children and Families Act 2014 and the SEND Regulations 2014, so the committee made recommendations to support this.

There was moderate-quality qualitative evidence that children and young people, their families and carers, and service providers all felt there was a lack of urgency about providing support until the child or young person reached a crisis point. Similarly, all these groups also felt that the crisis point could be avoided if support was provided earlier. This evidence aligned with the committee's experience, and they believed a lack of resources, issues with prioritisation, use of threshold criteria for accessing support, and statutory obligations all affected the situation. In response to this, the committee made a recommendation for services to work together before an EHC plan is issued to provide interim support and a simpler transition from interim support to the EHC plan, to keep people from reaching a crisis point. The EHC needs assessment process can take several weeks to complete. In addition, some services (such as schools) will conduct their own additional assessments, and there was high-quality qualitative evidence that this causes delays to the implementation of EHC plans. The committee agreed that support from education, health and social care was still needed during this process. These recommendations are in line with the committee's understanding of the SEND code of practice, which states 'where particular services are assessed as being needed…, their provision should be delivered in line with the relevant statutory guidance and should not be delayed until the EHC plan is complete'.

How the recommendations might affect practice

Practitioners may need more time to explain the EHC needs assessment process. However, if practitioners spend more time on this, families will likely have fewer queries, complaints and problems, resulting in time savings later on. It should also help prevent children and young people from getting to a crisis point, which is detrimental to their quality of life and costly to address.

Professionals may need slightly more time to explain what services are available and the criteria for accessing them. Services may need to work together to provide interagency training for education, health and social care practitioners on other services and their roles and responsibilities, to ensure practitioners can provide clear and relevant information. Providing this support to children and young people and their families is part of person-centred care. It may help children and young people in making decisions, and ensure that they get support that meets their needs. This prevents scarce resources from being wasted. It ultimately results in better choices, care and outcomes for disabled children and young people with severe complex needs.

Commissioners will have to set up commissioning frameworks (or use existing frameworks), to reinforce a more coordinated approach to EHC needs assessments. This coordinated approach may mean holding more interagency team meetings and more effective communication between education, health and social care services. However, it will mean services and practitioners are able to work together more effectively to provide the support that is needed by children and young people.

Return to recommendations

Why the committee made the recommendations

The committee agreed it was important to make recommendations on the EHC needs assessment process, to make it more streamlined. In the committee's experience, children and young people need a more personalised plan that is specific to their age, level of understanding, communication needs, and circumstances. This was supported by moderate-quality qualitative evidence that the involvement and understanding of the child or young person was dependent on their level of ability.

There was moderate-quality qualitative evidence that some practitioners felt they did not have the chance to contribute relevant information they had about a child or young person to assessments led by other services. The committee considered it was very important that specialist knowledge about the needs of the child or young person from practitioners outside of the interagency team is included in the EHC needs assessment in order to fully assess a child or young person's needs.

There was low-quality qualitative evidence that early identification of needs and referral can be helpful in securing support for children and young people. To make sure that services are ready to provide support when it is needed, the committee felt strongly that practitioners and services need to make referrals as needs are identified, without waiting for the assessment process to finish. They were confident that doing this would help children and young people get the support they need sooner.

There was low-quality qualitative evidence that children and young people and their families and carers felt that the process of getting an EHC plan took too long, and needed a lot of effort on their part. Moderate-quality qualitative evidence showed service providers thought there was a lack of transparency about how decisions on EHC plans were made, timescales for review, and processes for appeals or complaints. The Children and Families Act 2014 and the SEND Regulations 2014 set out timescales for each stage of the process for EHC needs assessments and EHC plans, so the committee could not make different recommendations on this. However, they did highlight the time limits from the legislation, as the evidence and their own experience suggest that these time limits are not always adhered to.

In the committee's experience, there are circumstances when parents or carers decline assessments. This was reflected by moderate-quality qualitative evidence that parents and carers felt disillusioned with statutory provisions and thought there was little point in requesting help, so opted out of the process. The committee agreed that the reasons for declining assessments were varied, so this should be discussed with parents or carers to ensure that the best possible support can be provided for the child or young person. They also thought it was important to ensure parents and carers understood how to request an assessment in future (because their circumstances and views may change), and for professionals to consider whether declining an assessment may cause a safeguarding issue. The committee were confident that making this recommendation was necessary to ensure appropriate support could be given to parents and carers.

How the recommendations might affect practice

Services will need to work in a more coordinated way, for example by ensuring a consistent approach when carrying out assessments, or by holding more meetings with each other. Commissioners across education, health and social care will have to set up or reinforce commissioning frameworks, to encourage a more coordinated approach to EHC needs assessments.

Making referrals as needs are identified (without waiting for the assessment process to finish) may result in earlier referrals and quicker turnover between services.

The recommendation on timescales for completing a needs assessment and producing an EHC plan helps spread awareness of existing statutory guidance and may reduce variation in practice.

Return to recommendations

Why the committee made the recommendations

There was moderate-quality qualitative evidence that practitioners can have low expectations of disabled children and young people with severe complex needs and may underestimate their potential. This reflected the committee's experience that many children and young people have not had the chance to consider their aspirations for employment, independence, relationships and community involvement. This can lead to restricted goals and ambitions, and an EHC plan that does not reflect the genuine strengths, abilities and interests of the child or young person. The committee therefore highlighted ways to address this in the recommendations.

The committee's understanding of the SEND code of practice and legislation in the Children and Families Act 2014 is that parents and carers must be consulted throughout the EHC plan process. However, moderate-quality qualitative evidence suggested that sometimes this is limited and only done in a tokenistic way. Based on this, the committee emphasised the need to take the views of parents and carers into account throughout the process.

There was moderate-quality quantitative evidence that a lack of specific, measurable, attainable, relevant and timely (SMART) outcomes in EHC plans made it unclear what support will be needed, and who is responsible for providing it. The committee's understanding of the SEND code of practice was that it recommends that SMART outcomes should be used, but in the committees' experience this is not always done. The committee recommended that practitioners consider using the outcome sandwich, because in their experience it is a helpful tool that can help practitioners to develop meaningful outcomes.

How the recommendations might affect practice

The recommendations reflect effective practice, but are currently implemented to varying degrees by different services and will involve a change of practice for some providers. Longer consultations or additional follow-up may be needed to fully discuss the outcomes for EHC plans with children and young people and their parents and carers. Spending sufficient time deciding on outcomes for the EHC plan will help practitioners to provide person-centred care. It ensures children and young people are engaged with the process and that EHC plans align with their aspirations. If not done correctly, it can lead to restricted goals and ambitions, poor engagement, and ultimately lower quality of life and general wellbeing. A good process for developing outcomes will help children and young people with making decisions, ensures that they get support that meets their needs, and ensures that scarce resources are not wasted.

Return to recommendations

Why the committee made the recommendations

Currently, individual services contribute information and advice for EHC plans without knowing what the proposed outcomes are for the children and young people. This can lead to inconsistencies between the information and advice provided by different practitioners and services, and an EHC plan that is not practical to implement. These problems often lead to the statutory 20-week timeframe for producing an EHC plan being missed. Therefore, the committee felt strongly that recommendations were needed to address this issue. Based on their experience, the committee were confident that sharing the proposed outcomes with services would allow services to specify how they would help to achieve these outcomes when contributing advice and information. This would result in EHC plans that made sense and would support the agreed outcomes for each disabled child or young person with severe complex needs.

Although recording the views of children and young people in EHC plans is mandatory, moderate-quality qualitative evidence indicated that this is not always done accurately or in enough detail. Practitioners often paraphrase the words of children and young people, and this can lead to inaccuracies.

Advice and information contributed by different services needs to be put in specific sections of the EHC plan when written by local authorities, so that commissioners can see which services need to be provided from which budget lines. In the committee's experience this is often done poorly, with a lack of distinction between what practical and therapeutic support is needed to educate or train the child or young person and what health and medical support they need to stay well. The committee were confident that including this information correctly in EHC plans would resolve these issues so that children and young people are provided with the support they need.

Moderate-quality qualitative evidence indicated that children and young people, their families and carers, and service providers thought that EHC plans were not clear on who is responsible for providing the support specified in the plan. Therefore, the committee recommended specifying the support needed to help children and young people achieve the outcomes in their EHC plans.

Moderate-quality qualitative evidence indicated that service providers lacked the expertise and knowledge needed to complete EHC plans. In addition, the committee's experience was that EHC plans are often based on old information and therefore do not fulfil their purpose. Preparing good-quality EHC plans is crucial to ensuring that disabled children and young people with severe complex needs get the support they need. To address this, the committee made recommendations for local authorities (who are ultimately responsible for the EHC plan process) and health commissioners, to ensure plans are brought up to the correct standard.

Moderate-quality qualitative evidence showed that children and young people's views are not always captured accurately, and that it is important to make sure views are not rewritten in a way that changes the meaning. Based on their experience, the committee recommended ways in which the child or young person's voice could be preserved when recording their views.

Moderate-quality qualitative evidence identified that it can be difficult for children and young people and their families and carers to understand the complicated terminology used in EHC plans. The evidence further highlighted that using accessible language would make it easier for children and young people to get involved, and improve accountability by ensuring everyone knows who is responsible for each part of the plan. The committee noted that certain sections of the plan would need to be written in technical language (for example information about health), but recommended that the outcomes and support provision sections should be written in clear language that can be understood by the child or young person and their families and carers. This aligns with the committee's understanding of the SEND code of practice, which states that 'EHC plans should be clear, concise, understandable and accessible to parents, children, young people, providers and practitioners'.

As part of ensuring that children and young people understand and agree with the plan, the committee recommended that practitioners check it with them during the planning process. Moderate-quality qualitative evidence indicated that parents and carers felt more positive about the EHC process when their involvement was clearly valued and they had the chance to make amendments to the EHC plan. Parents and carers have valuable experience from caring for their child, including an understanding of their child's needs, so their contributions to the plan are useful. In addition, explaining how their concerns have been addressed in the plan is a simple way of showing how their involvement is valued.

How the recommendations might affect practice

The recommendations reflect effective practice, and legislation and statutory guidance, but are currently implemented to varying degrees across education, health and social care. EHC plans are crucial, as they identify the educational, health and social care needs of disabled children and young people with severe complex needs and specify what support must be put in place to help achieve the desired outcomes.

Local authorities may need to change their practice to provide services with the proposed outcomes for children and young people. However, this would help services to provide more consistent information and advice, reduce the time needed to resolve inconsistencies, and lead to an EHC plan that is practical to implement. This will have a positive effect on the care and support received by children and young people and on their ability to achieve the desired outcomes. It should also make it easier to produce EHC plans within the statutory 20-week timeframe.

Some providers may need to change their practice, and more staff time may be needed for follow-up and discussions of EHC plans with children and young people and their families and carers. Checking the draft plan with children, young people and their families will ensure that they understand the content of the plan and support that must be put in place to help them. This will help them to engage with the process and will make it more likely that the agreed care and support will be effective. All of this will positively impact their care and outcomes.

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Why the committee made the recommendations

In the committee's experience, the needs and circumstances of disabled children and young people with severe complex needs can change frequently. Therefore, the committee highlighted that professional reviews need to be regular. They could not specify exact timings as this would vary for different people. They also provided detail about when to conduct a professional assessment, to ensure that any change in needs is captured.

The local authority is responsible for making decisions about whether an EHC plan is still fit for purpose, whether any changes to the plan are needed, and whether to conduct a reassessment. To help local authorities with these decisions and ensure they have the latest information, the committee recommended that the results of any professional assessments conducted by individual services are shared with local authorities.

There was low-quality qualitative evidence that parents and carers spend a lot of time and effort contacting and coordinating between services, because services do not talk to each other. The committee looked at ways this could be addressed for the different reviews children and young people have. One possibility is the approach used for looked-after children and young people, who have coordinated EHC plan annual reviews and social care reviews with aligned review periods. The committee agreed that doing this for all children and young people would be helpful and make things simpler for families.

Low-quality qualitative evidence indicated that children and young people and their families and carers were concerned that their support would be reduced if they acknowledged improvements or talked about the child or young person's strengths in the EHC plan. The committee agreed that this can be a problem in practice. They were confident that the level of support specified in the EHC plan should only be reduced if the child or young person no longer needs it, otherwise there was a risk that the improvements may not be maintained.

How the recommendations might affect practice

The recommendations on review and reassessment of EHC plans reinforce statutory requirements and current practice, so should represent no change in practice for services.

The recommendation to reduce the level of support only if the child or young person no longer needs it may mean a change in practice for some services. However, this will prevent avoidable crises that are caused by services reducing the level of support too early.

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Why the committee made the recommendations

There was moderate-quality qualitative evidence in this area, based on the views of practitioners. They reported a decrease in funding that has reduced availability of services and prevents them from providing person-centred, joined-up care. In response, the committee highlighted that under section 42 of the Children and Families Act 2014, local authorities and health commissioners have a duty to secure or arrange (respectively) the provision specified in EHC plans. They therefore recommended that sufficient funding should be provided to enable the support in EHC plans to be provided.

There was also moderate-quality qualitative evidence that practitioners' requests for additional funding to support a child or young person can be refused without a reason being provided. This causes frustration, stops practitioners from providing clear information to children and young people and their families and carers, and can make it difficult to appeal the decision. Therefore, the committee recommended making the reasons for refusing additional resources clear to both practitioners and families.

How the recommendations might affect practice

The recommendations repeat legislation and statutory guidance, so there is no change in the resource impact on services. More funding may be needed in areas where local arrangements are not compliant with legislation and statutory guidance.

Practitioners may need more time to explain why requests for additional resources have been refused, and to explain potential courses of action. It is difficult to say if this will have an impact on the appeals process. There may be more appeals because families understand the process better, or there may be fewer appeals because the reasons for not providing additional resources are clearer.

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Why the committee made the recommendation

In the committee's experience, there are circumstances when parents or carers can decline an EHC plan. For example, if they are unhappy with the school named in the plan. The committee highlighted that in these circumstances, it is important to still engage with parents and carers, so that their children do not become lost to services and miss out on support.

How the recommendation might affect practice

Practitioners may need more time for discussions with parents or carers who decline an EHC plan. However, this rarely happens, so the overall time impact will be small.

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Why the committee made the recommendations

There was moderate-quality qualitative evidence that:

The Special Educational Needs (Personal Budgets) Regulations 2014 requires local authorities to provide parents and young people with information on personal budgets, if the child or young person has an EHC plan or will be issued with one. Based on the evidence, the committee supplemented this statutory requirement with a recommendation on specific information that local authorities should provide on personal budgets and direct payments.

In the committee's experience, when services are commissioned through direct payments and families become the commissioners of care, there can be a loss of coordination between support purchased through direct payments and statutory support provided directly through health and social care providers. Given the emphasis in the legislation and the SEND code of practice on services working together, the committee used their experience to recommend that local authorities and health commissioners continue to ensure services coordinate even if they have been commissioned using direct payments.

Personal budgets are mandatory for people aged 18 and over if they have a care and support plan, but they can choose whether or not to receive this budget as a direct payment. The committee agreed it was important to make people aware of this, as the difference between personal budgets and direct payments is not well understood.

There was moderate-quality qualitative evidence that families were concerned that personal budgets and direct payments would lead to uneven provision, shortages in provision and a reduction in services. Families did not want to be disadvantaged, and were concerned about having to prioritise within the constraints of a limited budget. They were also concerned that the budget may not be equivalent to the level of funding that is already available. In the committee's experience, direct payments are sometimes only large enough to cover the service itself but not any related costs. As a consequence, activities that the child or young person enjoyed previously may no longer be affordable, which could impact on their quality of life and ability to achieve the outcomes in their EHC plan. The committee were confident that if local authorities assessed the full cost of providing the services proposed in the needs assessment, this would help to address this problem.

How the recommendations might affect practice

Practitioners may need more time to advise children and young people and their families about personal budgets (including personal health budgets) and direct payments. As a result of this advice, there may be a change in the uptake of personal budgets and direct payments.

For families receiving direct payments, health and education services are already required to assess the full cost of providing services proposed in the needs assessment. However, this may represent a change in practice for social care. Services may be encouraged to think differently about the approach to funding and provision, and consider including support costs (for example, transport costs or variable costs of accessing different provision) in direct payments.

Local authorities and health commissioners will need to apply the same frameworks and processes they use to ensure the quality of directly commissioned statutory support to the support commissioned by families through direct payments. This could include frameworks and processes on training and competency, information sharing, monitoring and review. Doing this will ensure that all services supporting children and young people will receive the information needed to provide effective advice and support.

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Why the committee made the recommendations

There was evidence that parent training provided numerous benefits to parents and carers, improving their:

However, the evidence varied between very low to high quality. Important differences were seen when the outcomes were measured on some scales, but not on others, indicating uncertainty in the results. Therefore, the committee interpreted the results with caution and used the evidence to recommend general elements of the interventions rather than recommending any specific intervention. They also supplemented the evidence with their own knowledge and experience.

In the committee's experience, families often report a desire to have been directed to services that can provide emotional and practical support to enable them to come to terms with their child's diagnosis.

There was very-low- to low-quality evidence that person-centred planning approaches were beneficial in helping to include parents and carers in care planning, so the committee recommended that these were considered. Moderate-quality qualitative evidence, supported by the committee's experience, showed that different families and carers want different levels of involvement in decision making. Some families want to be regularly involved in making decisions, whereas some prefer to be guided by professional advice. In addition, in the committee's experience, families change their minds about the level of involvement they want over time.

Moderate-quality qualitative evidence showed that parents felt that they coordinated most of the services for their child and were worried about what would happen if they could no longer do this. To ensure parents are prepared, the committee recommended that practitioners should consider providing information about available emotional and practical support options.

There was very-low- to high-quality evidence that training for parents and carers was beneficial, and low-quality qualitative evidence showed that families needed more support to provide care for a disabled child or young person with severe complex needs. Therefore, the committee recommended that services consider working together to co-produce training with parents and carers. The committee also identified areas that this training could cover, based on the evidence.

In the committee's experience, there is variation in the level of training that each family needs. Some families will want more in-depth training straight away, and others will not. The committee felt strongly that training needs to be appropriate to the needs of families, so that families are able to learn at the level that will be most beneficial to them. The committee felt equally strongly that practitioners who lead the training need to have skills that are appropriate for the content of the training, so that people are not going beyond their skillsets, because this could make the training ineffective. In addition, the committee agreed that people all learn differently, so using different teaching styles in training would be sensible.

Some of the parent training interventions in the evidence were conducted in group format, and provided parents and carers with an opportunity to engage with each other and share experiences. The committee agreed that providing such opportunities would likely have a positive impact on parents and carers by helping them to learn from each other and develop support networks.

The committee have seen that not all families are ready to start training immediately (for example, if they have just received a diagnosis). Some families need more time, and the committee were confident that training would be more effective if families were able to start the training when they were ready.

More flexible options around training delivery (including session times, locations and formats) would make training sessions more accessible to parents and carers. Flexibility is particularly important for parents and carers of disabled children and young people, because their substantial caring responsibilities make it difficult to find time for the training.

How the recommendations might affect practice

Practitioners may need more time to include and support parents and carers (for example, by directing them to sources of support and including them in care planning). However, all local areas should already have processes for doing this, so there should be no significant impact.

Parent and carer training is currently available and there are examples of good practice across the country. However, practice is variable, and the recommendations may result in additional costs for some services. For example, training content may need to be slightly modified, and group activities may need to be included to provide opportunities for parents and carers to discuss their experiences. Currently, services commission parent and carer training in isolation, or with only 2 services working together. There might be costs associated with setting up the framework for a collaborative approach if services choose to do this, for example, more meetings and communication between services may be needed. However, collaborative working will make the training approach coordinated, cut out duplication of effort and result in efficiencies and cost savings to the organisations involved. It will also make practice more consistent. Most importantly, supporting parents and carers may avoid a breakdown in care, preventing crises and expensive care placements.

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Why the committee made the recommendations

In the committee's experience, social inclusion is as important as care and education for improving the quality of life of disabled children and young people with severe complex needs, but this may be more difficult for children and young people who are not in education or work. So the committee made recommendations to raise awareness of this.

There was very-low-quality evidence from 1 study that an adapted fitness programme increased positive social interactions for disabled children and young people with severe complex needs during group activities. The committee recommended considering adapted group activities (such as theatre) because some children and young people may prefer these to sports, and the committee agreed that children and young people are likely to have positive social interactions in other group activities as well. The committee agreed that the adaptations included in the fitness programme were an important part of the intervention and, therefore, recommended that providers adapt activities as needed.

Local authorities have a duty to provide short break services, but they will need to collaborate with voluntary and community organisations to provide a wide range of meaningful activities as part of these services. Moderate-quality qualitative evidence highlighted that short breaks provide benefits for children and young people, but also that services may only provide limited opportunities for activities, so the committee made a recommendation to address this. Local authorities will need to think about options for people living in rural areas, to prevent inequalities in access to these social activities.

The committee used their experience to make recommendations on ways services and practitioners could help children and young people to participate in social activities. This aligns with the committee's understanding of the SEND code of practice – that social inclusion should be included as a preparation for adulthood outcome in all EHC plans and reviews from year 9 onwards. The examples given are important areas of social participation that most people take for granted, but that disabled children and young people with severe complex needs may need assistance to get involved in.

There was some limited quantitative evidence that collaboration between health and education services can improve the ability of disabled children and young people with severe complex needs to communicate in classrooms. The main limitations with this evidence were that it was from only 1 study, and there were issues with the study design. However, this evidence was consistent with high-quality qualitative evidence that education practitioners valued the opportunity to learn from health professionals. The committee were confident that this collaboration is important to ensure that:

The committee agreed that similar benefits could be seen in other settings if health and social care services collaborated.

How the recommendations might affect practice

Local authorities have a duty to provide short break services, and the recommended group activities would fall under this category of service. Because local authorities already have to fund these services, there should be no resource impact. However, the type of short break services provided may change. Short breaks are integral to any support package. They allow young people with disabilities and severe complex needs to meet friends, take part in activities, develop independence, and improve their quality of life.

More children and young people may be able to attend education settings or community activities. There may be a higher cost to services, but there will be improvements in the quality of life and wellbeing of disabled children and young people with severe complex needs.

Because there is already a legal duty to make reasonable adjustments, which would include the adaptations specified in the recommendation, there should be no change in practice or resource impact to making these adaptations.

Services will need to set up or use existing frameworks for a collaborative approach for commissioning and providing activities that can help improve social participation.

Services may need to hold more joint and coordinated meetings to allow them to work together more closely on supporting social participation.

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Why the committee made the recommendations

Regulations 20(6) and 21(6) in the SEND Regulations 2014 require local authorities to ensure that preparation for adulthood is covered in EHC plan reviews from year 9 onwards. However, moderate-quality qualitative evidence indicated that preparation and decision making for adulthood is insufficient and left too late. The committee made recommendations to emphasise these regulations.

There was low- and very-low-quality quantitative evidence that participation and inclusion were improved when a young adult team approach was used to help with transition from children's to adults' services. There were important limitations to this evidence. In particular, the evidence came from only 1 study, and there were issues with potential bias. However, this quantitative evidence was consistent with moderate-quality qualitative evidence that practitioners valued a child- or young-person-centred approach that encouraged a multidisciplinary team working around the child or young person to identify and meet their needs. The SEND code of practice states that high aspirations are crucial to the success of the child or young person and that discussions should focus on their strengths, capabilities and the outcomes they want to achieve. However, in the committee's experience, some practitioners are not following this approach and are instead focusing on short-term support that can more easily be achieved. So they agreed it was important to promote a focus on goals for adulthood and maximising independence.

The committee's understanding of the SEND code of practice is that local authorities should ensure there are pathways into employment, independent living and participation in society, and that they must work with children, young people and families to develop coordinated approaches to securing better outcomes for adult life. However, in the committee's experience, because most of the work on preparing for adulthood is done in educational settings, the focus is often on staying in education. In addition, there was qualitative evidence that young people need more support to understand their options and reach their full potential. The committee wanted to ensure that young people understood all their options and had time to prepare for them, so made recommendations to address this.

In the committee's experience, the transition from paediatrics to adult health services can cause problems, as not many adult services provide the same 'wrap round' services as paediatrics. This can be a major source of concern for families, because paediatricians tend to coordinate care for the young person, and this coordination is then lost when the young person transfers to adult services. The committee agreed that for effective transition planning, healthcare professionals should find out what local services are available and involve them as needed to help with the transition.

The qualitative evidence highlighted various problems with preparations for adulthood:

In the committee's experience, the variation between services in the ages used for non-statutory transitions creates gaps in the services that young people can access. This is significantly detrimental to the care and support young people receive and potentially exposes them to harm, so the committee were confident that a consistent approach was needed.

The committee felt strongly that services needed to work together to better coordinate transition, and needed to read the sections of the plan produced by other practitioners. If this was not done, they were confident that it would lead to a plan that is not practical to implement. They also recommended areas that young people and their families and carers should be given information about, so that they know what to expect and experience less uncertainty and stress.

In the committee's experience, practitioners do not always focus on long-term goals throughout the transition process. Planning and goals for adult life are only raised near the point of transition, which can make them seem overwhelming and unachievable for young people and their families. It is important to include short-term goals, to break down the long-term goals into manageable steps and help young people see how they can progress.

Not all young people with severe complex needs will continue in education. The committee directed practitioners to relevant guidance to ensure that the needs of these people are still met.

There was moderate-quality qualitative evidence that having the same named worker throughout the process helped maintain consistency and a positive relationship between young people and services (named workers are recommended by the NICE guideline on transition from children's to adults' services). It would not be possible to have the same named worker before and after transition, so the committee made a recommendation on handing over these responsibilities to maintain consistency and continuity of care.

Moderate-quality qualitative evidence showed that parents felt shut out once their child reached adulthood, so the committee recommended that parents and young people are given information to help them prepare for the change.

There was evidence relevant to other parts of the process:

These areas are covered in the NICE guideline on transition from children's to adults' services. Because of this, the committee did not make new recommendations in these areas.

How the recommendations might affect practice

The recommendations reflect current practice and existing NICE guidance, and align with legislation and statutory guidance. However, more practitioner time might still be needed to meaningfully involve children and young people in transition planning. And education, health and social care practitioners might need to hold more joint and coordinated meetings, for example, to ensure that young people understood all their options, and to plan and set goals. Early planning will ensure that there is plenty of time to achieve the outcomes specified and that everything is not left to the final review, by which time it is too late to do any developmental work. Transition planning done in the right way will result in more efficient person-centred processes. It may potentially result in better long-term outcomes, with goals being achieved and overall savings to the services. It can also have important economic consequences, if young people are able to find employment or volunteer work.

There is variation in how far children and young people are involved in transition planning, and in the effectiveness of transition between children's and adults' health services. The recommendations should make practice more consistent.

There may be a greater uptake of certain services, such as supported internships.

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