Supporting Children and Young People with Disabilities

1. Key Principles

The Children and Families Act 2014 established the working principles for children/young people with special educational needs/disabilities:

Extending the Special Educational Needs (SEN) system from birth to 25 and giving children, young people and their parents/carers greater control and choice in decision-making;
Establishing birth to 25 Education, Health and Care Plans;
Offering Personal Budgets - young people and children who have Education, Health and Care Plans have the right to request a Personal Budget, which may contain elements of education, social care and health funding;
Creating a duty for joint commissioning which requires local authorities and health bodies to work in partnership when arranging provision for children and young people with Special Educational Needs;
Requiring local authorities to involve children, young people and parents/carers in reviewing and developing provision for those with Special Educational Needs and to publish a Local Offer of services;
Promoting local authorities to adopt a key working approach, which provides children, young people and parents /carers with a single point of contact to help ensure the holistic provision and co-ordination of services and support.

NICE Guidelines

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:

Offer flexible support and provision, tailored to individual needs;
Training, resources and time should be allocated to the child’s needs;
Work with an integrated team to meet the child’s needs which includes health and social care professionals, parents/carers and the whole team who is supporting the child;
Know the child well and understand the child’s needs:
Know the child’s preferences and that their needs have been identified and recorded;
Changes should be shared with the integrated team;
Contingency plans are in place to maintain continuity of care and deal with changing and fluctuating needs.

2. The Importance of the Child or Young Person’s Views, Promoting Advocacy and Mental Capacity

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:

Follow the requirements of the requirements of the Mental Capacity Act 2005 and its Statutory Code of Practice. See also Mental Capacity Act resource;
Ensure that the young person is involved as much as possible in the decisions made on their behalf;
Others who know the young person well should be consulted and their views taken into account.

For further information, see NHS, Mental Capacity Act, and Advocacy and Independent Visitors Procedure.

3. The Importance of Partnership Working

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.

4. Education and Leisure

4.1 What is the Local Offer

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.

4.2 What is an EHCP?

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.

4.3 Social Participation and Travel Training

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.

5. Transition from Children's to Adults' Services

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.

6. Health

6.1 Funding/Commissioning

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.

6.2 Working with Health and Supporting Children with Complex Medical Needs

Some children require specialist care, support, or treatment to reduce the risk of health deterioration.

For example:

Risk of (or actual) pressure areas;
Stoma;
PEG tube;
Tracheotomy;
Double incontinence;
Immobility or severe mobility needs;
Oxygen dependency;
Dysphagia (elevated risk of choking or aspiration);
Any condition that is deteriorating rapidly or that fluctuates significantly;
Significant communication needs.

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:

Ensure that staff are competent to carry out these tasks and have evidence from medical practitioners that this is the case;
Ensure that the type of delegated work they are expected to carry out is acceptable to the Home/Organisation
Ensure that indemnity insurance is in place for delegated clinical tasks:
Ensure that training and medical practitioners will provide ongoing supervision when a clinical competency must be assured to be at a required standard;
Agree a joint incident investigation policy if things go wrong.

For further details, see Nice Guidelines - Recommendations on Service Organisation, Integration and Commissions.

6.3 Moving and Handling

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.

6.4 Medication Needs

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.

For further advice on other medication issues

The CQC has a dedicated email for medication advice and support: medicines.enquiries@cqc.org.uk

6.5 Oxygen Use in the Home

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).

6.6 Nutrition and Hydration Needs

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:

Nasogastric tube feeding;
Percutaneous Endoscopic Gastronomy (PEG tube);
Parenteral nutrition (intravenous feeding).

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.

6.7 Communication Needs

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.

Issues to consider

Have they had a communication assessment by a Speech and Language therapist (SALT) and has this been incorporated into the child’s Care and Placement Plan?
Are specialist equipment or techniques that a therapist has recommended being used or needed such as The TEACHH system; Makaton; a communication board/mat; Augmentative and Alternative communication, (AAC), devices, such as Voice Output Communication aids (VOC)?
Is information accessible e.g. easy read information or pictures and put in a format which the child or young person can understand?
Can objects of reference be used such as physical objects that are relevant to the conversation or question? Can they show you want they mean?
Is observation, play and behaviour how the young person communicates?
Have you ensured the child has sufficient time to answer and process the question?
Are there environmental issues that need to be taken into consideration?

For further information on inclusive communication, please see: Government advice on inclusive communication and CYP Me First website.

6.8 Complex Behavioural Needs

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.

6.9 Mobility Needs

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:

6.10 Palliative Care and End of Life Care

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

Maintains 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.

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.

6.11 Parallel planning

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.

6.12 Death of a Child

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:

The care of the body;
How the family want to be informed;
Relevant legal considerations, including;
Notifying Ofsted:
- The involvement of the child death overview panel;
- Involvement of a LeDeR review if the child has a learning disability (for further information on LeDeR, please see NHS website, About LeDeR);
- The involvement of the coroner;
- Registration of the death.
Funeral arrangements;
Post-mortem examination (if this is to be performed);
Please also see the Notification of Serious Events Procedure.

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).