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

Before making a palliative or end of life care plan, find out if the child or young person has already documented their wishes (for example, in an advance care plan).

When making a palliative or end of life care plan for a disabled child or young person with severe complex needs, healthcare professionals should:

• tell the education and social care practitioners who are supporting the child or young person

• request a review of the education, health and care (EHC) plan (if they have one).

The interagency team should explain what support options are available and find out what further support family and carers need at each stage of the palliative and end of life care process.

Let the child or young person choose which support and activities to continue with. Keep providing these in parallel with the palliative care plan and end of life support.

When reviewing the EHC plan and other support the child or young person receives, be flexible, and focus on:

• maintaining things that the child or young person views as important, such as social activities and contact with friends (this includes seeing friends at school or college)

• addressing new problems or needs that have developed since palliative or end of life care started (for example, new health problems).

When a child or young person's needs change and new support is agreed, implement this as soon as possible, without waiting for the EHC plan to be finalised.

Education and social care practitioners should continue to be involved. They should adjust the support they provide in line with the palliative or end of life care plan.

Interagency teams should arrange regular joint reviews of the palliative or end of life care plan, with the frequency of review based on how rapidly the child or young person's needs are changing.

Health services should consider providing training for education and social care practitioners, to help them understand how palliative and end of life care and parallel planning work. This training should be delivered by the most relevant healthcare professionals with experience in providing palliative and end of life care for children and young people.

For more guidance on end of life care, see the NICE guideline on end of life care for infants, children and young people with life-limiting conditions. In particular, see the sections on:

• general principles and decision making

• advance care planning

• care of the child or young person who is approaching the end of life

• preferred place of care and place of death.

When conducting assessments for communication aids:

• think about how these would work across multiple settings (for example, if the child or young person can use the communication aid at school and at home)

• if possible, provide equipment to the child or young person rather than to a service they use (such as their school), so they can use the equipment wherever they go

• include the child or young person and their families and carers in the assessment process.

When a child or young person has been provided with a communication aid, education, health and social care services should:

• provide information to staff, and train them to support the child or young person and to make best use of the communication aid (the local augmentative and alternative communication service can provide this training, working with the specialised service as needed)

• ensure that staff know how to get support if the device is damaged or no longer fit for purpose

• agree who is responsible for maintaining, servicing and insuring the communication aid

• provide support during transition (for example, when the child or young person finishes education), so that they can continue using the communication aid in new environments and with new staff

• provide a paper-based backup for children and young people who are using powered systems, for when the powered system breaks or is not appropriate

• work with specialist services to ensure that the child or young person can use their communication aid in all settings (home, school and others)

• arrange reviews for the communication aid, to ensure it continues to meet the needs of the child or young person.
  
  Services should also provide all this information, support and training to families and carers.

Education, health and social care practitioners should tell children and young people who use augmentative and alternative communication and their families and carers about any support and mentoring groups that could help them with communication and social interaction.

Education, health and social care services should tell their staff about the eligibility criteria for augmentative and alternative communication services (both local services and NHS England specialised services).

Education, health and social care practitioners should refer disabled children and young people with severe complex needs to specialised augmentative and alternative communication services if they meet the eligibility criteria.

For specialised services, education, health and social care services should follow the referral process and eligibility criteria specified in the NHS England guidance for commissioning augmentative and alternative communication services and equipment. Do not add requirements for referrals to be made by specific practitioners (such as occupational therapists), because this will cause delays.

When environmental adaptations may be needed for disabled children and young people with severe complex needs, education, health and social care services should:

• provide information on how to get assessments for adaptations

• support families through the process of assessment.

When conducting assessments for environmental adaptations:

• think about how these would work across multiple settings (for example, whether the child or young person can use a switch at school and at home)

• if possible, provide equipment to the child or young person rather than to a service they use (such as their school), so they can use the equipment wherever they go

• include the child or young person and their families and carers in the assessment process.

When an environmental adaptation has been made for a child or young person, education, health and social care services should:

• provide information and train staff on how to use the adaptation

• agree who is responsible for maintaining, repairing, servicing and insuring the adaptation.

Education, health and social care services should train children and young people and their families and carers to use environmental adaptations they are provided with, and check that they are competent to do so.

Education, health and social care services should tell children and young people and their families and carers how to get a review and reassessment of their environmental adaptations when their needs change.

Education, health and social care practitioners should tell children and young people who use environmental adaptations and their families and carers about any support and mentoring groups that could help them with environmental accessibility and social interaction.

When families move, education, health and social care services and practitioners from the old area and the new area should work together to ensure that they can access necessary equipment during and after the move. This involves:

• checking who owns the equipment, and if the child or young person can take it with them or if they will need replacements in the new area

• agreeing what assessments are needed in the new area

• keeping children and young people and their families up to date during and after the move.

Education, health and social care services should tell their staff about environmental control services, so that staff know to refer children and young people who meet the eligibility criteria.

Education, health and social care practitioners should refer children and young people to specialist environmental control services if they meet the eligibility criteria.

Education, health and social care services should follow the referral process and eligibility criteria specified in the NHS England service specifications for environmental control services. Do not add requirements for referrals to be made by specific practitioners (such as occupational therapists), because this will cause delays.

Local authorities should help disabled children and young people with severe complex needs to use transport (to help them get anywhere they need to go, not just to school). They should consider providing a training framework to achieve this. Local authorities could develop their own training programmes as part of this framework, or use existing ones (such as ASDAN's module on using transport).

Local authorities should ensure that services implement the training framework.

Travel training could cover:

• assessing the child or young person's mobility skills and identifying problems they will have with using public transport

• assessing and managing risks

• route planning

• using assistance services for booking tickets

• mobility and traffic awareness

• having someone accompany the child or young person until they are used to the route

• travelling with parents and carers, for children and young people who will not be able to travel on their own

• how communication aids can help, if the child or young person uses them

• how to safely ask for help when something goes wrong.

Local authorities should provide parents, carers and relevant professionals (such as teachers) with information to help them better support children and young people who are using public transport (for example, independent travel training, availability of concessionary fares).

Education providers should ensure that independent careers information, advice and guidance is provided using the Gatsby benchmarks, to help disabled young people with severe complex needs think about their employment options. For more information on the Gatsby benchmarks, see the Department for Education's statutory guidance on careers guidance.

Local authorities and commissioners should ensure that supported internship programmes are available in their local area for young people, to help them develop job searching and employability skills, and to support them into employment.

When commissioning employment support services for young people, local authorities should include a requirement in the service specification to provide a lead employment practitioner (for example, a job coach) for each young person who is going to undertake a supported internship. This practitioner should have expertise in helping young people with disabilities to find work, and the authority to coordinate work and direct the interagency team on issues related to employment.

When commissioning employment support services for young people, local authorities should consider including a requirement in the service specification to provide a lead employment practitioner (for example, a job coach) for each young person who has employment as an outcome in their education, health and care (EHC) plan.

Education, health and social care practitioners should start discussing employment as a future option from the start of transition planning (by year 9, age 13 or 14, but ideally earlier than this). Follow this up with more specific discussions, and direct the young person and their family and carers to relevant sources of information.

Education, health and social care practitioners should consider making a vocational profile with young people who are considering employment, to identify their skills and what they want to do in the future. Do this well in advance of the move into post‑16 education.

Education, health and social care practitioners should work together when planning employment support and consider that young people may need to be involved in:

• travel training, to help them prepare for a work commute

• developing communication passports or communication plans to support them at work

• identifying any environmental adaptations or equipment that they will need for work

• planning their personal care needs at work

• planning support if they are anxious about starting work

• training for employers, to help them communicate with and support the young person with their work.

Supported internship providers should help disabled young people to find work by:

• creating links with local employers, so they can identify job opportunities, address employer misconceptions about disabled young people, and explain what on-the-job support the interagency team can provide

• contacting relevant support groups.

Following a supported internship, and before ceasing the EHC plan, the current provider should work with the prospective employer to plan next steps for the young person after the internship ends:

• agree what changes will happen, and when

• agree who the young person can go to for help

• look for ways the young person can use their experience from the internship in their job.

Local authorities should include information about support workers and job coaches in their special educational needs and disability (SEND) Local Offer, so that young people, their families and prospective employers know what help and resources are available. Funding for support workers and job coaches is available through the Department for Work and Pensions' Access to Work scheme.

Encourage employers to train and appoint workplace buddies (who are not their line manager) for disabled young people.