People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.
These recommendations cover the support that all disabled children and young people with severe complex needs should receive. There are also recommendations in this guideline on:
The government's special educational needs and disability (SEND) code of practice is the primary guidance for processes around SEND.
This NICE guideline makes recommendations on how existing legislation and statutory guidance should be put into practice. When there is evidence that existing legislation and statutory guidance is not being implemented, the guideline recommendations reiterate this and provide further guidance to help with implementation.
Education, health and social care practitioners should always:
put the views, life goals and ambitions and preferences of the disabled child or young person with severe complex needs at the centre of planning and decision making
take the views of parents and carers into account
take account of the cultural background of the child or young person and their parents and carers.
For children and young people who are not able to actively participate in planning or decision making, education, health and social care practitioners should take into account the views of the people who know them best.
Do not assume that all children and young people with a particular diagnosis need the same support.
Ensure that all children and young people are involved in discussions and decisions about their education, health and social care support. Get each child or young person's input in the way that is most effective and accessible for them. For example:
invite them to attend in-person or virtual meetings (or parts of meetings) where their views should be represented
short 'about me' presentations
photo diaries
video or voice recordings.
Keep a record of how the child or young person participated in discussions and decisions, and what contribution they made.
Find out which members of the child or young person's family should be involved, in the context of their current individual family circumstances (for example, when a family member other than a parent has parental responsibility). Review this if their family circumstances change.
Work closely with children, young people and their families and carers to:
get to know them better, to understand their needs
draw on the expertise they have from their lived experience and associated needs
build a positive working relationship with them, to better understand their views, life goals and ambitions.
Encourage and support children and young people to give their views on their health, care, education and support, and express what they want and need.
Take account of the communication needs of children and young people. If needed, consider getting support from a specialist to help them participate in discussions and decisions and express their views.
Encourage parents and carers to think about how their child can give their own views and be involved in decisions. Ask them what services can do to support their child in communicating their views.
Regularly check that children and young people and their families and carers are satisfied with how they are involved in decisions about their support. If they are not satisfied, look for ways to address their concerns.
Learn about the approaches families and carers use (now or previously) when caring for their child. If they are beneficial, continue using them in the same context. Avoid using those that have not worked well in the past.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on principles for working with children, young people and their families.
Full details of the evidence and the committee's discussion are in:
Take care to use empathetic, supportive language when communicating with families and carers, because they may be anxious and perceive judgemental attitudes from practitioners.
Provide information in a spirit of partnership with families and carers. Avoid being directive (unless the family and carers prefer this), and take their experience and perspective into account when providing information.
Be sensitive to and address the feelings of children, young people and their families and carers when providing information. Help them to understand and reflect on information, and direct them to sources of statutory and independent support if needed.
Enable children and young people to communicate their views in a way that is appropriate for their age, developmental level and communication abilities.
Find out what communication formats and media the child or young person prefers (for example, children who are non-verbal might use alternative and augmentative communication). Communicate with them using their preferred format. Ensure the format allows them to use any inclusive terminology that is relevant to them.
Be aware that a child or young person may prefer different communication formats for different purposes.
Ask children and young people and their families and carers if they have an up-to-date communication passport.
Record children and young people's communication preferences in a format that can be shared, so that they do not have to repeat this information.
Establish the most effective way of communicating with families and carers, for example providing information in different languages or involving an interpreter.
Be aware that parents or carers may have communication preferences and needs of their own, and that these may affect their ability to take part in discussions and understand information about their child's support.
Education, health and social care services should give children, young people and their families and carers up-to-date, accessible information and advice about:
the process and purpose of assessment and diagnosis
the education, health and social care support they are receiving
any delays or changes in the above
what other support they are entitled to
the meetings they will be involved in and how to contribute their views
the roles of the practitioners and services that are currently supporting them, and any services or practitioners that they have been referred to for future support
what to expect from services
relevant policies and processes
how to raise a concern about their support and how to provide feedback to encourage service development (for example via parent carer forums).
Education, health and social care services should direct children, young people and their families and carers to sources of support and advice, including:
SEND Information, Advice and Support services
specialist national or local support groups
local carer support groups (for example parent carer forums)
peer support groups
their SEND Local Offer.
SEND Information, Advice and Support services should help children, young people and their families and carers understand what support is available for them, based on their specific needs.
Ask children and young people and their families and carers what they expect from services. If their expectations cannot be met, explain why and explore alternatives.
For more guidance on communicating and discussing complex information, identifying preferred communication formats, cultural sensitivity in communication, and tailoring information to individuals, see the:
NICE guideline on babies, children and young people's experience of healthcare
NICE guideline on patient experience in adult NHS services (in particular recommendation 1.5.14).
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on communication formats and providing information.
Full details of the evidence and the committee's discussion are in:
Ask children and young people and their families and carers how they would like to be involved in practitioner-led review meetings about them.
Before discussions and meetings, practitioners should help children and young people prepare by:
providing them with information (in accessible formats) and support to help them and their parents and carers take part, and checking that they understand this information
encouraging their parents and carers to discuss the meeting with them in advance
providing support for their parents or carers before the meeting if they need help completing any documents
checking that meetings are physically accessible, and that they can afford to get there.
Before meetings, the chair should find out:
what is important to the child or young person
their age, communication abilities and circumstances (see recommendation 1.1.16).
Use this information when planning meetings, to ensure that the child or young person can meaningfully participate (see the recommendations on information sharing and privacy).
When planning meeting agendas:
prioritise the child or young person's wishes, aspirations and goals, in addition to the statutory content and
include any other relevant issues that parents, carers and education, health and social care practitioners need to cover.
As far as possible (based on practitioners' contracted working hours), consider the child or young person's preferences when planning meetings, to help them participate and understand what is happening. For example:
Ask them when and where they would like to have the meeting:
consider scheduling it at a time of day when they are not usually tired and/or
consider scheduling meetings outside of school time when possible, so they do not miss lessons or feel excluded and/or
consider having the meeting in a place where they feel comfortable and do not have to travel too far and/or
consider virtual meetings.
Consider showing them the meeting room and asking them where they would like to sit.
Consider if they are anxious in groups of people or do not want to discuss a sensitive topic in front of everyone. Arrange a separate meeting so they can get their views across (for example, a one-to-one meeting with a practitioner they trust, or a videoconference).
Consider making adjustments to the meeting format and schedule (for example providing breaks during long meetings).
Take into account family circumstances.
Ensure that, at each meeting:
there will be education, health and social care practitioners who know the child or young person and are involved in their support
key additional relevant people are able to attend (for example, a college representative for a review on transition from school to college).
Take account of the child or young person's right to privacy:
hold meetings in places with as much privacy as possible
tell them who will be at the meeting, and why
only invite the key education, health and social care practitioners who are needed at the meeting, to avoid large groups of practitioners that may be intimidating for some children and young people.
Consider using person-centred planning tools (for example, Planning Alternative Tomorrows with Hope [PATH]) to help structure and conduct meetings.
Communicate with the child or young person at meetings using their preferred format, and any basic rules that help them to feel comfortable. The chair should remind everyone at the meeting what the child or young person's communication preferences are before the meeting starts.
Give children and young people plenty of time to take in information and express their views in discussions and meetings. Do not rush them.
When providing information in discussions and meetings, check that children and young people understand it and how it applies to them.
Agree clear actions (at meetings, and in other discussions between practitioners and the child or young person and their family and carers). For actions that will directly affect the child or young person:
record them in an action log, in a format that the child or young person and their family and carers can understand
share the log with the child or young person and everyone involved in their care
review the log regularly to ensure the actions are being done.
Practitioners should consider recording meetings (written, audio or video; in line with local policies on information governance and consent), so the child or young person and their family and carers can review them again later.
If a practitioner cannot attend a meeting, decide whether it needs to be rescheduled. Take into account:
the problems caused by delaying the meeting
the risk of the meeting not being productive if it goes ahead without all the relevant practitioners
the risk of causing discomfort or distress to the child or young person if there are people at the meeting that they do not know
the consequences for the family and carers (such as parents having to rearrange time off from work).
If a practitioner cannot attend an interagency team meeting, or any meeting with the child or young person, they should:
tell the person who arranged the meeting in advance
send a fully briefed delegate to represent them, or provide a written update or report
request details of any relevant actions and follow these up
review the meeting minutes and action log when available.
Ask the child or young person if they would like to involve any siblings or friends in meetings (to share their views on the child or young person's strengths and interests). If they would like to do this:
ask the child or young person to invite the sibling or friend
if the sibling or friend agrees to attend the meeting, contact them to explain how they can be involved
involve the parents and carers of the child or young person and their sibling or friend as necessary at each stage of this process.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on preparing for and running meetings with children and young people.
Full details of the evidence and the committee's discussion are in:
Education, health and social care services should work together to make the way they interact with each child and young person more consistent.
For a short explanation of why the committee made this recommendation and how it might affect practice, see the rationale and impact section on using a consistent approach.
Full details of the evidence and the committee's discussion are in evidence review M: views and experiences of service providers.
These recommendations should be read alongside guidance on Deprivation of Liberty Safeguards and Liberty Protection Safeguards.
Provide children and young people and their families and carers with information to help them play a part in shared decision making.
When a child is unable to respond with intentional communication, think about whether their preferences could be identified in another way (for example through observation, play, or their behaviour).
When a child can express a view, but their view does not align with the views of their parents, support the child and parent to understand each other's perspective and try to get agreement. If this is not possible, work impartially and separately with them and with their parents.
If disagreements cannot be resolved and the child or young person is under 16:
remember that the child or young person's needs are paramount
take the views of the parents into account
remember that children and young people under 16 can give their own consent if it is clear that they fully understand what is involved.
If disagreements cannot be resolved and the young person is over 16, consider the young person's views first. You must uphold their decision if they have capacity to make it.
If you think a young person aged 16 or over lacks capacity to make a particular decision about their support and education, you must:
follow the requirements of the Mental Capacity Act 2005 and its statutory code of practice
ensure that the young person is as involved as possible in the decisions made on their behalf.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on decision making.
Full details of the evidence and the committee's discussion are in:
Ask children and young people and their parents and carers about information sharing as early as possible, to avoid them having to repeat information to different practitioners.
Ask for and record informed consent to share information when needed with other practitioners and services.
Ask if there is any information they do not want to be shared, and discuss the implications of not sharing this information.
Ask who they would prefer to discuss sensitive information with.
Explain what information will be shared without their consent, for example in relation to safeguarding.
Practitioners should follow and stay up to date with their organisation's policy on consent.
Practitioners must stay up to date with the relevant legislation and statutory guidance.
Once you know the child or young person's preferences, share all agreed information with all services involved in supporting them.
Make sure that all services involved have access to all agreed information about the child or young person.
When specialised care plans (such as behaviour management plans) have been agreed for a child or young person, share these plans (and any updates) with them and their parents and carers, and with all relevant practitioners.
Check the information sharing preferences of children and young people and their families and carers at least annually (for example, check at each education, health and care plan review).
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on information sharing and privacy.
Full details of the evidence and the committee's discussion are in:
Be aware that disabled children and young people may have emotional and mental health needs that can be obscured by their severe complex needs.
These recommendations should be read alongside Section 23 in the Children and Families Act 2014.
If you think a child or young person may have complex health needs or disabilities, think about whether they are likely to also have special educational needs and social care needs.
If a child or young person is likely to have complex health needs or disabilities and is also likely to have special educational and social care needs:
discuss this with them and their parents and carers before notifying the local authority, and if possible get their agreement on when to do this
advise them and their parents and carers about any voluntary organisations that can provide advice or assistance, and any educational support that is available before they start or return to school
direct them and their parents and carers to their special educational needs and disability (SEND) Local Offer and SEND Information, Advice and Support services
after getting consent, find out which education and social care services need to be involved and contact them at the first opportunity.
If you think a child or young person may have a special educational need, think more broadly about their circumstances and decide whether they need to be referred to other services. For example:
Do they have specific needs that can be addressed with clear actions and solutions, or are they likely to need broader support?
Could there be an underlying health condition, and do health services need to be involved?
Could they have unmet social care needs, and do social care services need to be involved?
If a child or young person is likely to have special educational needs and is also likely to have complex health and social care needs:
discuss this with them and their parents and carers
advise them and their parents and carers about any support organisations in their SEND Local Offer that can provide advice or assistance, and any educational support that is available before they start or return to school
direct them and their parents and carers to SEND Information, Advice and Support services
after getting consent, find out which health and social care services need to be involved and contact them at the first opportunity.
All disabled children are defined as 'in need' and entitled to an assessment of need under Section 17 of the Children Act 1989. However, some social care support for families may be available without an assessment. These recommendations should be read alongside the duties on reasonable adjustments in the Equality Act 2010.
When making a referral for a social care assessment for family support:
include a detailed description of the reasons for making the referral, including the emerging health and social care needs (as discussed with the child or young person and their parents and carers) and
include any reasons the family might need help to access healthcare services (for example, families on low income who cannot afford to get to appointments) and
discuss the potential outcomes of the referral (including an assessment of need) with the child or young person and their family.
Be aware that parents and carers may be anxious about involving social care services. Find out what they know about social care (particularly family support services), and:
explain areas they do not understand
address any misconceptions
explain the difference between safeguarding, child protection social care, and broader family support services.
If you identify a concern, refer in line with local safeguarding policy.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on identifying needs and involving other services.
Full details of the evidence and the committee's discussion are in:
These recommendations should be read alongside NHS England guidance on Care, Education and Treatment Reviews and chapter 9 of the special educational needs and disability (SEND) code of practice.
If you think a child or young person may have a special educational need, explain to them and their families and carers:
who can request an education, health and care (EHC) needs assessment
how to request an EHC needs assessment
the criteria the local authority will use to decide whether to carry out an EHC needs assessment
what the assessment involves
how to get help with this process (for example, from support groups)
how to make an appeal, if the local authority does not think an EHC needs assessment is needed.
Local authorities should explain to education, health and care practitioners that EHC needs assessments should be requested based on a child or young person's needs, and not on other factors such as potential availability of funding.
Do not exclude children and young people from EHC needs assessments based solely on whether or not they have a particular diagnosis, or no diagnosis at all.
Practitioners should support children or young people and their families during the EHC needs assessment, so that families do not have to manage the process themselves.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on requesting a needs assessment.
Full details of the evidence and the committee's discussion are in:
When carrying out an EHC needs assessment, local authorities should explain to the child or young person and their families and carers:
the possible outcomes of the EHC needs assessment process
the purpose of the EHC plan and what it can help with
how they can be involved in the process and how their views will be incorporated
which services will be involved in the process
how long it should take to get an EHC plan (no more than 20 weeks after their initial request)
what will happen if an EHC plan is not issued
how to contact SEND Information, Advice and Support services.
If an EHC plan will not be produced in the statutory timeframe, local authorities should update children, young people and their families and carers on the reasons for this and provide information on current progress.
While children and young people and their families and carers are waiting for an EHC needs assessment, explain what services are available and might be appropriate, and the criteria for accessing them.
Direct children, young people and their families and carers to SEND Information, Advice and Support services for information about the criteria for funding and support.
Give families and carers help, time and opportunities to express their views and explain what support they think their child needs. Record this information during the assessment process.
Education, health and social care services should start working together before an EHC plan is issued, to ensure that:
the child or young person gets the interim assessments they need, and interim support as soon as a need is identified
the transition from interim support to EHC plan is as simple as possible.
While children and young people and their families and carers are waiting for the EHC needs assessment process to finish, provide support based on their identified needs. For example:
healthcare professionals should work with local teams to identify what interim assessments and support can be provided
practitioners should explain what support is available as part of the SEND Local Offer (such as short breaks)
education practitioners should provide special educational provision, based on what is currently understood about the strengths and needs of the child or young person.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on supporting children, young people and their families during a needs assessment.
Full details of the evidence and the committee's discussion are in:
During the EHC needs assessment process:
take into account the child or young person's age, level of understanding, communication needs and specific circumstances
contact any practitioners who have relevant or specialist knowledge about the needs of the child or young person, but who are not part of the interagency team, to better define the child or young person's needs
identify emerging needs and make referrals as these needs are identified, without waiting for the assessment process to finish.
Use all information available (including information from other practitioners or services) for assessments of children and young people.
These recommendations should be read alongside paragraphs 9.41 to 9.44 of the SEND code of practice.
When conducting EHC needs assessments, local authorities, services and practitioners must work to the timescales specified in the Children and Families Act 2014 and SEND Regulations 2014. In particular:
when an EHC needs assessment is requested, local authorities must decide whether the assessment is needed within 6 weeks
when a local authority requests information as part of an EHC needs assessment, services and practitioners must respond within 6 weeks
if the local authority decides that an EHC plan is not needed, they must inform the child or young person and their parents within 16 weeks of the initial assessment request
if the local authority decides that an EHC plan is needed, they must complete the needs assessment and produce a finalised EHC plan within 20 weeks of the initial assessment request.
If parents or carers decline any assessments:
think about why they are declining and take account of any cultural or communication challenges
discuss their reasons for declining and address any concerns they have
explain how they can request an assessment in future, and encourage them to get in touch if they change their minds
think about whether this may cause a safeguarding issue, and follow local safeguarding processes.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on carrying out the needs assessment, timescales for the assessment and when parents or carers decline an assessment.
Full details of the evidence and the committee's discussion are in:
These recommendations should be read alongside requirements on draft education, health and care (EHC) plans in Section 38 of the Children and Families Act 2014, Regulation 13 of the Special educational needs and disability (SEND) Regulations 2014 and chapter 9 of the SEND code of practice.
Encourage all disabled children and young people with severe complex needs to express their life goals, ambitions and aspirations, and explore their strengths, abilities and interests with them. Focus on all of these when agreeing outcomes for the EHC plan.
Take the views of parents and carers into account throughout the assessment, production and review of EHC plans (see the recommendations on principles for working with children, young people and their families).
When writing the agreed outcomes in EHC plans:
make them SMART (specific, measurable, attainable, relevant and timely)
consider using the 'outcome sandwich' (specify the timeframe, the skill to be developed, and what this skill would help the person to do).
Base your expectations for a child or young person on their own life goals and ambitions, rather than on their condition or needs.
Query with other practitioners if you think their expectations for a child or young person are too low.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on agreeing on outcomes for the EHC plan.
Full details of the evidence and the committee's discussion are in:
Practitioners within the same organisation should read the information and advice produced for the EHC plan by their colleagues, to ensure they can support all the proposed outcomes through their own work with the child or young person.
Local authorities should consider providing the proposed outcomes for each child or young person to education, health and care services. Services should specify how they will support these outcomes when contributing their advice and information to the EHC plan.
Record the views of children and young people in EHC plans. Make it clear which parts of the plan contain their contributions.
When local authorities write EHC plans:
they should use the information provided by practitioners to describe the special educational, therapy, medical, health and social care needs of children and young people in sections B, C and D of the plan
they should distinguish 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.
Commissioners should use the information in sections F, G and H of the EHC plan to commission the services the child or young person needs.
When contributing information and advice for EHC plans, practitioners should (within their own area of expertise) specify the special education, health and social care support that will help children and young people to achieve the outcomes in the plan, including:
the type of support they need
how often they need this support
the level of expertise required to provide the support
who is responsible for providing the support (see the recommendations about competency in delegated clinical tasks).
Local authorities and health commissioners should ensure that EHC plans:
are based on up-to-date information
are informed by information and advice contributed by practitioners who have the right expertise and knowledge of the child or young person.
Preserve the child or young person's voice when recording their views:
use their preferred communication format
use their own words, or the equivalent in a different format if they do not communicate verbally (for example, symbols or other alternative or augmentative communication, drawings, photo collages, or like/dislike lists)
do not rewrite what they have said.
Local authorities should write the outcomes and support provision sections of the plan in language that is understandable to the child or young person and their families and carers. For guidance on providing information in different formats, see:
During the planning process, check with the child or young person and their family and carers and:
make sure that they understand the plan outcomes, and what these will mean in practice
make sure that the plan makes sense to them and they agree with it
check if they have any concerns
if they have a concern that cannot be addressed as part of the EHC planning process, explain and record the reasons why.
It may be difficult to do this for some children and young people. However, you should still involve them as far as possible.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on providing advice and information for the EHC plan.
Full details of the evidence and the committee's discussion are in:
Education, health and social care practitioners should review the child or young person's progress and needs at regular intervals, to:
check if their needs or circumstances have changed
ensure that outcomes remain realistic and focused on helping them reach their full potential.
Conduct a professional assessment if:
the child or young person's needs change significantly (for example, if they develop new health problems or there is a change in their existing conditions) or
their circumstances change significantly.
Share the results of the professional assessment with the local authority so that they can decide whether:
the EHC plan is still fit for purpose or
any provisions in the existing EHC plan should be changed (without a full EHC plan review or reassessment) or
to conduct a reassessment of the EHC plan.
Consider coordinating the EHC plan annual reviews and social care reviews.
Do not reduce the support specified in the EHC plan just because a child or young person shows improvements in particular areas or is able to do new things, because they may rely on the support they get to do this.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on reviewing progress and needs, and coordinating with EHC plan reviews.
Full details of the evidence and the committee's discussion are in:
Local authority commissioners and their partners should provide sufficient funding to enable all support listed in the EHC plan that they are responsible for to be provided.
When requests for additional resources are refused:
the people who make this decision should explain the reasons for not providing this support to the practitioners involved
the practitioners should discuss this with the child or young person and their family and carers, and explain potential courses of action.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on funding.
Full details of the evidence and the committee's discussion are in evidence review K: barriers and facilitators of joined-up care.
If parents or carers decline an EHC plan:
discuss their reasons for this
address any concerns they have, taking account of any assumptions or cultural beliefs
discuss the potential implications of deciding not to have an EHC plan
explain how they can request an EHC needs assessment in future, and encourage them to get in touch if they change their minds
agree what ongoing support will continue to be provided
think about whether this may cause a safeguarding issue, and follow local safeguarding processes.
For a short explanation of why the committee made this recommendation and how it might affect practice, see the rationale and impact section on if children, young people and their families decline an EHC plan.
Full details of the evidence and the committee's discussion are in evidence review M: views and experiences of service providers.
These recommendations should be read alongside government guidance on children and young people's continuing care; NHS England guidance on continuing healthcare and government guidance for local authorities and clinical commissioning groups on the delivery of direct payments and personal health budgets.
Local authorities and health services should inform disabled children and young people with severe complex needs and their families and carers about personal budgets (including personal health budgets) and direct payments, covering:
if they are eligible, and if so how to apply
what they can use the money for.
Local authorities and health commissioners should continue to ensure services coordinate even if they have been commissioned using direct payments. For example, if the family commission health and care support for a child or young person, the local authority and health commissioners should ensure that those providers still have access to health and care advice directly from statutory providers.
Be aware that personal budgets are mandatory for people aged 18 and over who have a care and support plan (although the person can decide whether or not to receive their budget as a direct payment), in line with the Care Act 2014.
For children, young people and families and carers who are receiving direct payments, local authorities should assess the full cost of providing the services proposed in the needs assessment.
For more guidance on personal budgets and direct payments for young people aged 18 and over, see the section on personal budgets and direct payments in the NICE guideline on people's experience in adult social care services.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on personal budgets and direct payments.
Full details of the evidence and the committee's discussion are in:
Direct families and carers to sources of practical support (including the special educational needs and disability [SEND] Information Advice and Support services) and emotional support, to help them come to terms with their child's needs and diagnosis (or lack of diagnosis).
Consider using a person-centred planning approach, to help include parents and carers in care planning.
Ask families and carers how much they want to be involved in making decisions about care planning, because different families will want different levels of involvement. Be aware that families may change their minds over time about the level of involvement they want.
The interagency team should consider providing information about the emotional and practical support options available to help parents plan for what will happen when they cannot care for their child (for example, if they are too unwell, or after their death). Support options could include voluntary and community support, advocacy, or seeking independent legal advice.
Education, health and social care services should consider:
jointly developing training for parents and carers
co-producing this training with parents and carers.
In training for parents and carers, consider covering:
helping them to understand and meet their child's needs
helping them effectively support their child's preferred method of communication
how the different services work and what support to expect for their child
what they can do if they think they are not receiving the support they are entitled to
how to advocate for their child.
Ensure that the training is appropriate to the needs of families. Ensure that the practitioners leading the training have the appropriate knowledge and skills (for example, a consultant might not be needed if the training is not going into detail on medical needs).
Consider using different teaching styles as needed, so the training is useful for all parents and carers.
Consider providing opportunities for parents and carers to discuss their experiences with each other during the training (for example, with group activities or by setting time aside for free discussion), because this will help them to learn from each other and develop support networks.
Do not restrict training to a single point in time (for example, at diagnosis). Let parents and carers take up training when they are ready for it, at different points in the child or young person's life. Regularly ask parents if they want to take up training (for example, at review meetings).
Consider making training sessions more accessible to parents and carers by:
providing flexibility on training session times, locations and formats
scheduling training at times when the child or young person has pre-arranged care (for example, when they are at school)
taking account of childcare arrangements for the family's other children.
Review the effectiveness of training (for example, by asking for feedback from parents and carers), to ensure it meets its objectives and the needs of parents and carers.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on supporting parents and carers, and training.
Full details of the evidence and the committee's discussion are in:
Ideally, social activities would be accessible to all children, so that children with and without disabilities could participate together. However, there is evidence that disabled children and young people with severe complex needs often do not have access to any social activities. So, although there are other ways to improve social participation for the wider population of disabled children and young people, these recommendations focus on improving social participation for disabled children and young people with severe complex needs.
Be aware that social participation:
is as important as care and education for maintaining and improving the quality of life of disabled children and young people with severe complex needs
is more difficult for children and young people who are not in education or work
may justify a young person with progressive or fluctuating illness in attending school or college, even if their attendance may be interrupted.
Local authorities should consider developing and funding group activities (for example, sports or theatre) as part of their short break services. When developing these activities, they should work with other organisations (including voluntary and community organisations).
When local authorities are planning group social activities as part of short break services, they should:
ensure there is a range of options to accommodate different behavioural, mobility, learning and communication needs, and different cultural backgrounds and family circumstances
think about access for those living in rural areas
think about what equipment will be needed to make activities accessible.
For statutory requirements on short breaks, see the Department for Education guidance on short breaks for disabled children.
Education, health and social care services should adapt activities, communication formats, the physical environment and participation methods as needed to meet the needs of the children and young people who are attending.
Interagency teams should plan support to help children and young people to participate in social activities. This could involve:
helping them make friends and access local community facilities
helping them use the internet and social media to maintain their friendships and meet new people safely
helping them to volunteer in the community.
Use short breaks for the benefit of the child or young person (for example, by running group social activities), as well as a break for families.
Health services should work with education and social care services to address children and young people's health needs flexibly, so they can join in with education and social activities alongside other children and young people.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on social participation.
Full details of the evidence and the committee's discussion are in:
These recommendations should be read alongside the special educational needs and disability (SEND) code of practice (chapter 8 and paragraphs 9.151 to 9.152), and supporting legislation.
Local authorities must ensure that preparation for adulthood is covered at education, health and care (EHC) plan reviews from year 9 onwards, in line with the SEND Regulations 2014.
When working with young people, interagency teams should:
focus on the young person's goals for adulthood, instead of just treating health problems or providing short-term support
help the young person and their parental deputy to prepare for adult life and maximise their independence.
Do not assume that young people will have a clear plan for adulthood at the start of transition planning. Help them to understand the different options, and give them and their families enough information to make informed decisions.
For young people who lack capacity to plan for adulthood, work with the people who know them best (including their parents and carers), using best interests decision making in line with the Mental Capacity Act.
Healthcare professionals should find out what services are available locally, and involve them as needed to help with the transition.
In addition to statutory transition points, education, health and social care services should work with the young person and their family and carers to coordinate the age of non-statutory transitions to adults' services, to ensure a consistent approach across sectors.
Interagency teams should work together to plan the transition between children's and adults' services for each young person. Each practitioner should read the sections of the plan produced by other practitioners, to make sure the plan works as a whole.
In transition reviews, make short-term goals (such as staying away from home overnight) as well as long-term goals (such as living independently).
Do not assume that all young people will go on to further education. For young adults aged 18 to 25 who are not in education, health and social care practitioners should ensure that their ongoing needs are met in line with Department for Education's SEND guidance on 19- to 25-year-olds' entitlement to EHC plans.
Plan well in advance of the transition to adults' services to prepare young people for alternatives to education (for example, look at supported internships and community adult social care support).
As early as possible and by the time young people are approaching adulthood, explain to them and their parents:
how their rights will change
how the level of parental involvement and decision making may change
how parents can register to act as a deputy if their child lacks mental capacity.
When a young person is transferring from children's to adults' services, the named worker should:
oversee and coordinate transition
hand over their responsibilities as named worker to someone in adults' services, and give this person's contact details to the young person and their family.
During transition, give young people and their families and carers information about:
the purpose and potential outcomes of the adult needs assessment
the timing of appointments and when decisions will be made
which services will be involved in their care during and after transition
what happens to their support if their EHC plan stops.
For more guidance on transition, see the NICE guideline on transition from children's to adults' services for young people using health or social care services, in particular the sections on:
person-centred approaches (recommendation 1.1.4)
involving young people and their carers in service design (recommendation 1.1.1)
nominating senior executives and managers to develop and implement transition strategies (recommendation 1.5.1).
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on transition from children's to adult services.
Full details of the evidence and the committee's discussion are in: