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

It was not possible to determine which aspects of practice and service delivery models improved outcomes, based on the limited, very-low-quality quantitative evidence available. So the committee made recommendations based on their knowledge and experience.

Health services will be the first to know when a child or young person needs a palliative or end of life care plan. It is important to find out if the child or young person has already documented their wishes (for example, in an advance care plan) before sharing information with other services.

In the committee's experience, other services are not always notified, and this can cause interruptions to the support provided to the child or young person. Health services should also consider providing training for other services, to help them understand how to best meet the changing needs of children and young people with palliative or end of life care plans.

The committee felt strongly that all services should continue to be involved. They were confident that doing this would improve planning, provide stable and consistent support, and give children and young people flexibility in which activities they want to continue. In their experience, there is a widespread belief that when children enter an end of life care process, they do not need much support beyond that offered by health services. This can lead to things that are important to the child or young person, such as community participation and maintaining social relationships, being overlooked.

There was moderate-quality qualitative evidence that education, health and care (EHC) plans are not always viewed as live documents that need reviewing and updating. However, the committee's understanding of the special educational needs and disability (SEND) code of practice is that EHC plans should be reviewed when there are significant changes in need, and the need for palliative or end of life care is a clear example of this. Changes in support need to be implemented as soon as possible because of the time pressures associated with end of life care. Similarly, regular reviews of the palliative or end of life care plans are needed, as the child or young person's needs can change frequently. The committee were not able to be more specific about the frequency of reviews because this would depend on individual circumstances.

It is important to consider the support needs of the child or young person's family, because these can be overlooked during palliative and end of life care, and families may not feel able to seek support in this situation if practitioners do not offer it.

How the recommendations might affect practice

It may be a change in practice for some services to continue social care and education support at the end of life. Services may need to work in a more coordinated way and be more explicit about the roles and responsibilities of different professionals.

Services will have to consider how support might need to change for a child or young person who has an end of life care plan. As a result, they may request more reviews of EHC plans. Services will also need to consider how to provide interagency training, to ensure that practitioners can provide better palliative and end of life support to children and young people and their families and carers.

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Why the committee made the recommendations

There was very-low-quality evidence that assistive technology may increase interpersonal interactions, participation and inclusion. There were issues with the quality of the evidence (for example, there was only 1 study and it was not conducted in the UK) and at follow up, not all of the participants had received the recommended assistive technology. This evidence was from a service that made recommendations on assistive technology but did not fund or provide this technology. Therefore, the committee agreed that a greater benefit may have been expected if the technology was provided.

There are existing augmentative and alternative communication services (local services, and NHS England specialised services) that provide support for people with communication needs. However, in the committee's experience, the specialised services are not well known and so are underused. This experience is consistent with moderate-quality qualitative evidence that practitioners and other staff lack the necessary skills and knowledge to work effectively to meet the needs of children and young people. It is important that staff know about the eligibility criteria for both local and specialised augmentative and alternative communication services, so that lack of knowledge is not a barrier to children and young people receiving support. The committee were aware that referrals are usually made by occupational therapists and speech and language therapists. However, the services accept referrals from other education, health and social care practitioners, so it is important that services do not cause delays by putting extra restrictions on who can make a referral.

Moderate-quality qualitative evidence highlighted that more training and multi-agency work is needed to communicate effectively with disabled children and young people. The committee also felt strongly that there needs to be agreement about who will maintain, service and insure communication aids, so that people know how to get support if equipment is damaged. In the committee's experience, these issues are often not resolved effectively, which means the equipment does not get used and children and young people's needs are not met. The committee were confident that making the responsibilities around these areas more explicit would resolve this issue.

In the committee's experience, it is also important to provide a paper-based backup for children and young people using powered communication aids, so that they can continue to communicate if the equipment breaks down.

There was moderate-quality qualitative evidence that using a consistent approach was beneficial for children and young people, as it is more predictable and helps them to generalise across different settings. As part of this, the committee encouraged services to think about how equipment can be used in multiple settings and across transitions, and how the child or young person and their families and carers can be involved in the assessment process. They also agreed that education, health and care services would need to coordinate with specialist services, to ensure that the child or young person can use their communication aid in all settings and get the most value out of their communication aid.

There was moderate-quality qualitative evidence that children and young people and their families and carers need more information and support to understand the services available to them, to help them make decisions and access services. To address this, the committee made a recommendation about providing information on support groups for children and young people who use assistive technologies. The SEND Regulations 2014 also specify that the SEND Local Offer must include information about available support groups.

There was a lack of evidence on whether assistive technology enabled disabled children and young people with severe complex needs to express their views. Because getting their views is central to the EHC needs assessment process and ensures that services and resources are allocated appropriately, the committee made a research recommendation on this.

How the recommendations might affect practice

In some areas, specialised augmentative and alternative communication services are underused. The recommendations may lead to an increase in referrals to these services. However, the specialised services are already funded by NHS England, so this will not lead to an increase in costs for local education, health and care services.

The availability of training on communication aids is variable, so providing training might represent a change in practice for some services. And practitioners may need to spend more time showing children and young people and their families and carers how to use communication aids. The amount of time required will vary depending on the complexity of the equipment and the number of people that need to be trained to use it. Training practitioners to use the equipment properly will ensure that the often costly equipment that has been assessed and prescribed will be used, and used correctly. It will improve outcomes, such as independence. It will also mitigate against the risk that only 1 practitioner knows how to use the equipment, so if they stop working with the child or young person, the equipment stops being used, potentially resulting in a deterioration of the child or young person's health and wellbeing.

There are established frameworks in place for maintaining, servicing and insuring communication aids, for example those provided by NHS England specialised augmentative and alternative communication services. This particular recommendation is only highlighting that responsibilities around these areas should be stated more explicitly.

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Why the committee made the recommendations

In the committee's experience, families often need support with the assessments needed to get environmental adaptations, and with the reassessments needed to ensure these adaptations are still appropriate when the child or young person's needs change.

There was very-low-quality evidence that assistive technology may increase interpersonal interactions, participation and inclusion. There were issues with the quality of the evidence (for example, there was only 1 study and it was not conducted in the UK) and at follow up, not all of the participants had received the recommended assistive technology. This evidence was from a service that made recommendations on assistive technology but did not fund or provide this technology. Therefore, the committee agreed that a greater benefit may have been expected if the technology was provided.

The committee have seen that services do not always think about how environmental adaptation equipment will be used across multiple settings. Often, equipment is provided to a specific service rather than the child or young person, preventing them from using it in other places. The recommendation on this is supported by moderate-quality qualitative evidence, which showed that children and young people benefited from a consistent approach as it is more predictable and helps them to generalise across different settings.

In the committee's experience, training would also be useful for children and young people who are using environmental adaptations, as well as for their families. This is particularly important because there would be safety concerns if environmental adaptations are not used correctly, so the committee made recommendations on training staff and families in how to use environmental adaptations. The committee also felt strongly that there needs to be agreement about who will maintain, repair, service and insure the equipment, and that it is important that people know how to get support if it is damaged. In the committee's experience, these issues are often not resolved effectively, which means the equipment does not get used and children and young people's needs are not met. The committee were confident that making the responsibilities around these areas more explicit would resolve this issue.

There was moderate-quality qualitative evidence that children and young people and their families and carers need more information and support to understand the services available to them, to help them make decisions and access services. To address this, the committee made a recommendation about providing information on support groups for children and young people who use environmental adaptations. The SEND Regulations 2014 also specifies that the SEND Local Offer must include information about support groups.

Based on the committee's experience, children and young people with environmental adaptation equipment can have difficulties when they move area, as it is not always possible to take equipment with them. This often has a negative impact on their quality of life, so the committee made recommendations to address this.

There are existing environmental control services that provide support for people with physical disabilities and multi-sensory impairments that restrict their ability to independently operate standard controls. However, in the committee's experience these specialist services are not well known and so are underused. This experience is consistent with moderate-quality qualitative evidence that practitioners and other staff lack the necessary skills and knowledge to work effectively to meet the needs of children and young people. It is important that staff are made aware of environmental control services, so that lack of knowledge is not a barrier to children and young people receiving support, and so that they refer children and young people if they meet the eligibility criteria. The committee were aware that referrals are usually made by occupational therapists. However, the services accept referrals from other education, health and social care practitioners, so it is important that services do not cause delays by putting extra restrictions on who can make a referral.

How the recommendations might affect practice

In some areas, specialised environmental control services are underused. The recommendations may lead to an increase in referrals to these services. However, the specialist services are already funded by NHS England, so this will not lead to an increase in costs for local education, health and care services.

The availability of training on environmental adaptations is variable, so providing training might represent a change in practice for some services. And practitioners will need to spend more time showing children and young people and their families and carers how to use these adaptations. The amount of time required will vary depending on the complexity of the equipment and the number of people that need to be trained to use it. Training practitioners to use the equipment properly will ensure that the often costly equipment that has been assessed and prescribed will be used, and used correctly. It will improve outcomes, such as independence. It will also mitigate against the risk that only 1 practitioner knows how to use the equipment, so if they stop working with the child or young person, the equipment stops being used, potentially resulting in a deterioration of the child or young person's health and wellbeing. There may also be fewer injuries if children and young people know how to use the equipment correctly.

There are established frameworks in place for maintaining, servicing and insuring environmental equipment, for example frameworks provided by the environmental control services. This particular recommendation is only highlighting that responsibilities around these areas should be stated more explicitly.

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Why the committee made the recommendations

There was no comparative evidence in this area. However, there is best practice and statutory guidance on environmental accessibility that the committee referred to. The Department for Education already requires regular assessment of the accessibility of education environments, but in the committee's experience this statute is not well known and is poorly understood. The committee agreed that health and social care services should also conduct annual assessments, to ensure that children and young people can access the full range of services they need and prevent barriers to access.

In the committee's experience, the results of accessibility assessments provide important information to help children and young people and their families and carers make decisions about which services to use. It is a statutory requirement for education providers to make their accessibility assessments publicly available, but the committee agreed that it could also be helpful for health and social care services to make this information publicly available because it would help families with decision making.

Staff knowledge of disability and accessibility should also be assessed because, in order for environments to be fully accessible, staff need to be committed to this ideal and to making reasonable adjustments; physical adaptations alone are not enough.

Accessibility assessments should be available for key public places that disabled children and young people need to access, to ensure they can access the provision specified in their EHC plans and to allow them to participate and feel included (for example, in after-school clubs that are not held at their school). Publicly funded organisations have a statutory duty to make reasonable adaptations to promote accessibility, but in the committee's experience some community organisations might not be aware of this duty or have sufficient knowledge about the required adaptations. Therefore, the committee agreed that interagency teams should ensure accessibility assessments are available.

There was no comparative evidence available on the effectiveness of adaptations to physical or sensory environments. Therefore, the committee recommended further research in this area.

How the recommendations might affect practice

Annual assessments of accessibility at a service level represent a change in practice for health and social care services. However, health and social care practitioners do already conduct accessibility assessments for individuals, to comply with legislation on access for disabled people. Overall this recommendation should not be a substantial change in practice. There may be some additional resources associated with setting accessibility assessments up and coordinating at a service level.

Assessing staff knowledge of disability and accessibility as part of annual accessibility assessments should already be a part of any properly conducted assessment. However, this may represent a change in practice for underperforming services, which will have to improve their annual assessments.

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Why the committee made the recommendations

There was some very-low-quality evidence that travel training increased independent public transport use by disabled children and young people with severe complex needs. The evidence was focused on travel to and from school, but the committee agreed it is important that training helps children and young people to go anywhere they need to, in order to increase independence and participation.

The recommendation is not limited to public transport, because in the committee's experience there will be some children and young people who cannot use public transport. For this group, being able to use other forms of transport (such as powered wheelchairs, taxis, or adapted cars that they can drive themselves) will significantly improve independence. The committee were confident that the same travel training process would apply, and there was no plausible reason the training would not work equally as well for these additional scenarios.

Based on their experience, the committee agreed that local authorities should consider providing a training framework to support travel training for all disabled children and young people with severe complex needs. This was because local authorities sometimes commission third party organisations to provide the training. The committee agreed that an organisation needed to have overall responsibility for implementing travel training to ensure that it happens. They were confident that local authorities were the appropriate organisation to direct the recommendation to.

The topics that travel training could cover were based on topics covered in the study the committee reviewed, and on their knowledge and experience of some of the challenges and risks children and young people face when travelling independently.

Providing information to parents, carers and relevant professionals was a key component of the travel training in the evidence, so the committee recommended that local authorities should do this.

The study on travel training also included providing disability awareness training for staff as part of the intervention. The committee agreed with this, as it would help disabled children and young people with severe complex needs to independently use public transport. However, as providers of public transport already have a statutory duty under the Equality Act 2010 to provide disability awareness training to their staff, the committee did not make recommendations on this.

How the recommendations might affect practice

Local authorities must make transport arrangements when needed to allow school-age children and young people to attend school. Travel training is one of the ways local authorities can do this for disabled children and young people with severe complex needs.

Help with travel to education and training for young people aged over 16 is covered by the Department for Education's statutory guidance on post-16 transport to education and training for local authorities. Local authorities are required to produce a transport policy statement, setting out any transport or other arrangements that they think are needed to allow young people to access education (this includes young people aged under 25 with EHC plans). Travel training is one of the arrangements that local authorities can use to help young people use public transport independently. Although there are other options, and there is no requirement for local authorities to provide travel training, in the committee's experience many of them do for this group.

For disabled young people with severe complex needs who are no longer in education, there is no requirement for local authorities to provide help with travel. In addition, the EHC plans for these children and young people will have ceased, removing a potential source of funding. However, the committee's view was that there is only a very small number of disabled young people who would actually use travel training when they are aged over 16 and not in education. So although there might be some additional costs to implement this recommendation, it would not have a significant resource impact.

Travel training is not consistently available in all areas, so there will be a change in practice for local authorities that do not have a training framework. However, most EHC plans will already specify a need for travel training, either because independent travel is listed as an outcome in its own right or because it is a means to achieve another outcome (for example, employment). The recommendation is unlikely to have significant resource implications because the committee's understanding of the SEND code of practice is that local authorities should provide enough funding for all the provisions agreed in EHC plans.

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Why the committee made the recommendations

The evidence on joint-working practices to prepare disabled children and young people for employment ranged from very low to low quality. Concerns included a risk of bias, the small number of studies, and the fact that the studies were not conducted in the UK. Therefore, the committee supplemented the evidence with their own knowledge and experience.

In the committee's experience, there is variation in the assistance provided to guide children, young people and their families and carers through employment options in the SEND Local Offer and the information is not always easy to understand. To improve consistency, the committee recommended using the Gatsby benchmarks, which are also recommended in statutory guidance from the Department for Education.

There was no evidence on supported internships. However, there was evidence that follow-on support increased independence in disabled young people with severe complex needs. The components of follow-on support in this study and supported internships in the UK are similar, so the committee used this evidence to make recommendations on supported internships. In addition, the SEND code of practice focuses on preparing for adulthood outcomes (which includes employment) in EHC plans from year 9 onwards. However, young people with severe complex needs have a very low chance of progressing to employment without assistance. The committee were aware of evaluations of supported internship programmes that have been undertaken by the Department for Education and UK Government. These evaluations concluded that supported internships are effective at helping young people with severe complex needs into employment. Therefore, the committee were confident that supported internships should be made available.

There was very-low-quality evidence that a named responsible practitioner improved young people's ability and confidence in meeting workplace expectations. This supported the committee's experience. They were confident that an essential component of supported internships is a lead employment practitioner with expertise related to helping young people with disabilities to find work. This lead practitioner provides one-to-one support to the young person, to coach them on the workplace skills and processes they will need to understand. Without this support, the committee agreed that employment outcomes would be much less likely to be successful.

The committee also agreed that the same benefit was likely to be seen for young people with employment as an outcome in their EHC plan but who were not undertaking a supported internship. To support implementation of this, they recommended that providing a lead employment practitioner should be a requirement in service specifications for employment support services. In the committee's experience, the lead employment practitioner would usually be a job coach. However, as there are other practitioners that could carry out this role, the committee did not limit it in the recommendation.

There are existing professionals who are trained to perform the role of lead employment practitioner. However, many people who are not trained are still providing such employment support. It is essential to have someone trained in employment support because the severe complex needs of this group of young people mean that additional and bespoke support is needed to help them find work.

There was moderate-quality qualitative evidence that preparations for adulthood are insufficient, inconsistent and left too late. In the committee's experience, families and young people are left to research employment options at the point when the young person is looking for a job. Preparing for adulthood early on would lead to better outcomes, so the committee made recommendations to support this.

The committee agreed that vocational profiles can help young people to find the type of work they would be good at.

In the committee's experience, it is important for practitioners from all services to work together and consider what employment support the young person may need, to prevent barriers to young people effectively participating in employment support. The committee were confident that practitioners should do this so that the responsibility does not fall on the young person and their family or carers.

Based on their experience, the committee recommended actions that supported internship providers can take to help young people move into paid employment or volunteer work when their supported internship ends. This is because this group will have additional hurdles to overcome compared with non-disabled people who are competing for the same jobs. Doing this will support employers to make reasonable adjustments around recruitment.

The committee agreed that young people and their families are not always aware of the support available from support workers and job coaches, and so recommended local authorities signpost to these services in the SEND Local Offer. It is a requirement of the SEND Regulations 2014 that the SEND Local Offer contains information about all services available in that local area.

In the committee's experience, mentors and workplace buddies are a useful source of support for young people, and make the start of their job go more smoothly for both the young person and the employer. It is important that workplace buddies are not the young person's line manager because the young person has to be able to share their anxieties with their buddy, so they can receive effective support before this results in a performance issue.

How the recommendations might affect practice

Commissioners are already required to make suitable arrangements for disabled young people who are eligible to access supported internships, where these are provided as part of the post‑16 SEND Local Offer. The recommendations on this should make practice more consistent and effective, but may represent a change in practice for underperforming services or poorly served areas.

More practitioners will need to be trained to provide employment support for young people, so that every young person who is undertaking a supported internship can be provided with a lead employment practitioner. Further practitioners will need to be trained if local authorities also decide to provide a lead employment practitioner to those young people who have employment as an outcome in their EHC plan. However, because this is an outcome in the EHC plan, funding already exists to enable this training to happen. Therefore, there will not be a significant resource implication.

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