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The Health and Well-being Standard
The Quality and Purpose of Care Standard
The Enjoyment and Achievement Standard
Regulation 5 - Engaging with the Wider System to Ensure Each Child's Needs are Met
Disabled Children and Young People up to 25 with Severe Complex Needs: Integrated Service Delivery and Organisation Across Health, Social Care and Education (NICE Guidelines)
Inspection Guidance (GOV.UK)
This procedure sets out how to support children and young people with disabilities. It also details what support should be provided by key agencies.
This chapter was added in July 2023.
The Children and Families Act 2014 established the working principles for children/young people with special educational needs/disabilities:
Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across health, social care and education (NICE Guidance) also sets out recommendations on how support should be tailored to the child or young person with disabilities and the following principles should be followed:
If a young person is aged 16 or over and the young person lacks capacity to make a particular decision about their care, support and education, all practitioners and staff must:
For further information, see NHS, Mental Capacity Act, and Advocacy, Independent Visitors and Independent Reviewing Officers Procedure.
Children and young people with disabilities need services to co-operate and joint working is key to facilitate children accessing the appropriate service as early as possible to meet their individual needs.
Local authorities in England have a statutory duty to develop and publish a Local Offer setting out the support they expect to be available for local children and young people aged 0-25 with Special Educational Needs (SEN) or disabilities, whether or not they have an Education, Health and Care Plan. Local authorities must consult locally on what provision the Local Offer should contain.
An Education, Health and Care Plan (EHCP) details the education, health and social care support that is to be provided to a child or young person aged 0-25 who has Special Educational Needs or a disability.
For further information, please see Children with special educational needs and disabilities (SEND): Extra help - GOV.UK.
Social participation is important for all children/young people and should be an important part of the package of care/support provided to the child/ young person to facilitate social contact and friendships.
Travel training is also important in facilitating social participation and independence and should be promoted in the Home and via the education establishment if appropriate.
Local authorities must ensure that preparation for adulthood is covered at Education, Health and Care (EHCP) Plan reviews from year 9 onwards, in line with the Special Educational Needs and Disability Regulations 2014.
Interagency teams should work together to plan the transition between children's and adults' services for each young person.
When determining eligibility for Adult Social Care, the adult worker will look at the pathway plan and consider this against the eligibility criteria and complete their own assessment.
The child’s allocated social worker and/or nurse assessor must invite adult workers and Adult Health colleagues to meetings as soon as practical. It may take time to source an alternative placement / agree funding which meets the needs of the child/young person. It is also important to help support and prepare the young person for any move to adult provision if the Home does not cater for young people over the age of 18.
Local authority commissioners and Health should provide sufficient funding to enable the right support to be provided to the child. Local Authorities cannot provide funding for a child’s health care needs. A Continuing Care Assessment should be carried out by the Integrated Care Board (ICB) by a nurse assessor to determine what level of support is provided for example some children are Joint funded by Health and the local authority or fully funded by Health.
For further information, please see Government guidance on the Continuing Care National framework.
Some children require specialist care, support, or treatment to reduce the risk of health deterioration.
For example:
Skilled medical support and care is needed for these children with disabilities.
Relevant health professionals are responsible for ensuring complex physical needs are met, but do not always have to carry such tasks out themselves. They can delegate clinical tasks so long as they provide support and training to staff for the individual child and are subsequently satisfied that staff members are competent to use any equipment and manage and support the child’s need safely.
In particular, the Home must:
For further details, see Nice Guidelines - Recommendations on Service Organisation, Integration and Commissions.
A physiotherapist will advise about issues such as moving and handling a child correctly, or finding the best position for the child to avoid and reduce injuries.
The Home will provide staff with general moving and handling training by a suitably qualified medical practitioner. This training will be updated regularly.
Any child who requires to be moved, should have their own moving and handling assessment written by a suitably qualified health professional. It should also detail how equipment should be used and maintained. Staff must follow this plan. It should be reviewed when the child’s needs change or on an annual basis.
Please see: First Aid, Home Remedies and Medication Procedure.
Some children and young people are prescribed controlled drugs. Examples of controlled drugs are morphine and pethidine for pain, methadone for withdrawal and Ritalin for hyperactivity.
ALL CONTROLLED DRUGS MUST BE STORED SAFELY BY BEING KEPT IN A LOCKED CABINET. NO MORE THAN 28 DAYS' SUPPLY SHOULD BE KEPT AT A TIME.
See also: CQC information on Controlled Drugs.
For further advice on other medication issues
The CQC has a dedicated email for medication advice and support: medicines.enquiries@cqc.org.uk
Oxygen should be treated as a medicine and if in use in the Home or as a mobile unit, the Health and Safety Assessment and the risk assessment should be completed around safe use of oxygen. Fire assessment should also detail oxygen use in the Home.
Staff should have received the relevant training to administer oxygen which should be reviewed regularly by a suitably qualified medical practitioner.
For further details on what needs to be looked at as part of risk assessment, please see Managing oxygen in care homes (Care Quality Commission).
Non-oral routes of providing nutrition, hydration and medication are normally implemented when a child’s swallowing function is severely impaired and they are at significant risk of malnutrition, choking or aspiration.
Non-oral routes include:
These methods must only be used by staff who have had specialist training and been deemed competent by a relevant health professional and no changes should be made without consultation with the Multi – Agency team. Nutrition and Hydration given via the non- oral route should be recorded as medication.
For further information about non-oral routes, please see NICE guidance: Enteral feeding and PEG feeding tubes.
It is important to understand the child or young person’s communication needs and enable children and young people to communicate their views in a way that is appropriate for their age, developmental level and communication abilities.
For further information on inclusive communication, please see: Government advice on inclusive communication and CYP Me First website.
For some children who cannot vocalise what their needs and difficulties are, behaviour can become complex when it becomes frequently challenging, unpredictable, unmanageable, or poses a risk of harm to the child or to others.
The first thing to remember is that complex behaviour does not just happen. There is always a reason for behaviour, although not always an obvious one.
It can take time to understand what the triggers are and may need the involvement of a specialist, such as a G.P, Clinical Psychologist or a Speech and Language Therapist.
The first thing to check is that all the child’s care needs are being met as per their EHCP/Placement Plan. Unmet needs can lead to complex behaviour triggered by things like hunger, thirst, discomfort, boredom, poor communication etc.
For further information about behaviour support plans and complex behaviours, see: The Challenging Behaviour Foundation: Positive behaviour support planning and Bild's Positive Behaviour Support.
The child may need to be assessed for walking aids and wheelchairs, buggies and adapted seating. An Occupational Therapist will assess for mobility aids
The charity Whizz-Kidz can provide children under 18 with mobility equipment that's not available from the NHS. They also offer wheelchair skills training. Go Kids Go! also provides free wheelchair skills courses.
Special Education Needs Disability Travel support will be provided from the local authority to provide home to school transport if the child is eligible. Please refer to the local information for further details.
In terms of welfare rights, the child may be entitled to the high rate mobility component Disability Living Allowance, then the child can apply to the Motability scheme to buy a powered wheelchair or buggy. Blue Badge for disabled parking may also be available.
For further details, please see the following websites:
When a palliative or end of life care plan is made for a child or young person, the interagency team should explain what support options are available and review the EHCP so that the child
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.
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. This should also include the child’s or young person’s family if appropriate.
Parallel planning is planning for end of life care while taking account of the often unpredictable course of life‑limiting conditions. It involves making multiple plans for care, and using the one that best fits the child or young person's circumstances at the time.
Support should be offered by the interagency team when a child dies around who should be contacted and when. The plan should be detailed so the Home knows what to do when a child dies.
There should also be a plan of what happens when the child dies, covering the practical arrangements and emotional support that will be offered to Staff and the child’s family. This should cover matters such as:
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.
For more guidance on who should be informed, see Tell Us Once: What to do after someone dies (GOV.UK).
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