Supporting Children and Young People with Disabilities / Health Care 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.

If your home provides health and personal care that falls into the scope of the Care Quality Commission (CQC) then your home should be registered with both Ofsted and CQC.

CQC is an independent regulator of health and social care in England which mainly inspects adult social care and health provision but it also covers children who require regulated activity. Regulated activity is when health and personal care is provided by a provider. For example to disabled children or to children who have long term illnesses.

Personal care is a legally defined regulated activity as set out in the Health and Social Care Act (Regulated Activities) Regulations 2014 schedule 1. It relates to physical assistance to a child to help with tasks for daily life, for example eating or drinking, using the toilet, including help with bathing and dressing, and prompting and supervising a child to do any of these activities, where the child is unable to decide for themselves about performing such an activity without being prompted or supervised. This does not relate to usual developmental milestones.

For further information please see Ofsted and CQC Joint Registration Guidance: Children’s Homes and Health Care

If in doubt you can contact CQC for further information on https://www.cqc.org.uk/

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:

• 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 needs 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 to a joint incident investigation policy if things go wrong.

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

Many children need support with washing, nutrition and hydration including feeding, hair care, skin care, toileting, oral hygiene and dressing until they gain more independence and skills in these areas. However for some children, they require continued support and personal care. It is important that personal care is offered in a safe way, and the child is treated with dignity and respect. Personal care also supports good hygiene and health including good infection control.

The child should have a detailed Care/ Placement Plan which covers the following;

Personal Care needs

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 the 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.

See also: CQC advice around children over the age of 16 and mental capacity and covert administration of medication.

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 the 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:

1. Nasogastric tube feeding;
2. Percutaneous Endoscopic Gastronomy (PEG tube);
3. 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.

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.

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 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 by 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:

• Disability Living Allowance (DLA) for children: Overview (GOV.UK);
• Motability Scheme;
• Blue Badge scheme: information from your council (GOV.UK).

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.

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:

• 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) and keeping of medication/ records in order for the coroner to access these;
• Please also see the Notification of Serious Events Procedure.

For more guidance on end-of-life care, see the NICE guideline: 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).