Children with a Disability and those with Complex Health Needs

Children with disabilities and health issues are children first and their care and support should be person-centred at all times. Their achievement should be celebrated as with any other child. All children need individualised care and support. You will be helped to understand and meet their day-to-day needs. Care provided should be sensitive and responsive.

This chapter talks about children who have disabilities and those who have complex health needs. There are too many types of disability and complex health needs to list here but you must remember that if you are caring for a child with these needs, there will be a team around the child who collectively have identified specialisms and knowledge about the disability or condition and what it means for the child to function on a day-to-day basis.

Many of these children need a coordinated approach from other services such as health, education and social care to meet their needs, together with parents and those who have or continue to provide day-to-day care or support to the child.

Caring for a child with diagnosed disability or condition requires you to be able to work effectively with the other people involved with the child to understand better what this means for them, what they need and what they are really like.

Disabled people often find that their disabilities are the first and only thing that people notice about them or are invisible and not well understood. A person-centred approach means that the child should be thought of first, and before the special need that they have.

Specific training is available for foster carers which will assist in meeting particular needs of children with disabilities or health conditions.  Carers should talk with their supervising social worker to ensure they access training and support they need.  There is also an introductory fostering on-line course titled ‘Working with Disabled Children’.

Some examples of the care that children with a disability or complex health condition might need are:

• Help with physical care such as mobility issues, moving and handling, specialist personal care, meal preparation and feeding;
• Help with learning disabilities or identified cognitive difficulties;
• Neuro-diverse conditions such as autism;
• Sensory impairments such as sight or hearing difficulties, or where smell, touch, taste or spatial awareness are affected;
• Communication difficulties such as speech, language, voice, as well as a need for alternative or supplementary communication such as signing, Makaton, picture exchange etc;
• Administration of specialised medication and/or managing conditions such as epilepsy, diabetes, asthma;
• Specialised help with breathing, eating and other daily functions like using the toilet, skincare and bathing;
• Provision of physical therapies or muscle training, such as exercising, massage, traction.

Carers will have access to the multi-disciplinary team, such as occupational therapists, disability support team.

Some children may need help in a number of these areas. Some children have entitlements to benefits that are not affected by being in a foster home (not means-tested). Similarly, foster carers may qualify for carers allowance in some circumstances. See Money Matters and Insurance.

It is important that in order to meet a child’s needs, any equipment, training or specialist assessment has been identified and provided before the child moves in. A child’s needs in these areas may also change over time, and you should discuss with your supervising social worker any referral that becomes necessary for a re-assessment, further training or support:

• You may need special training from a suitably qualified medical professional. This could include giving special medication or treatment and understanding the child’s needs and care plan;
• You should, if necessary, have access to an assessment by an Occupational Therapist and be provided with suitable equipment such as a hoist or a special car seat or wheelchair;
• Where there are risks directly associated with caring for the young person, for example manual handling, providing intimate personal care, responding to dysregulated and /or aggressive behaviour risk assessments should be completed.

It should also be clarified what equipment the child may bring with them and whether this continues to be suitable for their needs and their new home with you. It is recommended that carers complete an inventory of equipment when the child moves in. Any new equipment needed should be identified.

When considering caring for a child with a disability or complex health condition, you need to be given full information in order to be clear whether you can meet their needs. You and the care team must be confident that you can meet the child’s needs before the child’s arrival.

Some foster carers may have a specific approval relating to provision of short breaks for disabled children who live with their families.  In this case it should be discussed before a child is matched with the carer what the nature of care will be, what training is needed, and what equipment the child will bring, as well as the role of the foster carer and parent during the short break.

Once you have decided to take the child, the Placement Planning meeting should detail all the support including medical needs the child has. It should be clear what decisions you can make regarding the child’s day-to-day life including delegated authority and health discussions.  It also should be clear what responsibility parents retain depending on what legal basis the child is cared for by the Local Authority, and who will inform them as necessary if the child’s needs change.

Children with a disability or a complex health condition may have an Education, Health and Care Plan which identifies the help that they need to get the best out of going to school, pre-school and college. You should know what this says before a child comes to live with you. If you consider the child you are caring for could be eligible for an Education, Health and Care Plan you should discuss this with your supervising social worker, and the child’s social worker in the first instance.

Many children with disabilities need continuing services throughout their lives.  Assessment and provision of care should take a long-term perspective. This will help you, the birth family and professionals to make decisions about the kind of help needed, at different points in time, for example with education, short breaks, transitions or other services, including adult services. (See also Moving towards Independence Procedure)

Your Supervising Social Worker or the child’s social worker should help you to identify appropriate support and advice from relevant agencies. This should also include how you support the child to follow their interests and take part in activities they are interested in.

All children, regardless of any disability or health conditions should have all they need to reach their potential and lead as full a life as possible. A foster carer plays a pivotal role in achieving this and advocating for the child or young person they care for.

For children with disabilities or complex health conditions, detailed and specific recording of presenting needs can be crucial in ensuring their needs are understood. It is crucial that foster carers accurately record, to underpin and evidence the child or young person’s needs.

Some children may need such a level of supervision, care and control that consideration is needed as to whether they are effectively deprived of their liberty. The legal framework in relation to Deprivation of Liberty does not ordinarily apply to those under the age of 18, but the courts have made it clear that local authorities are under a duty to consider whether any children in need, or looked-after children, (especially those in foster care or in a residential placement), are subject to restrictions which amount to a Deprivation of Liberty.

Whether or not a child is subject to a deprivation of liberty will depend on the facts of each case and should be subject to annual review. It should also be subject to review at each Looked After or Child in Need Review.

More detailed information about this specialist area of practice and the legal framework can be found in the Surrey Children's Services Procedures Manual.

Local authorities in England have a 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 (see School and Education).

The Local Offer should be available via the local authority website.

The Local Offer must include information about:

• Special educational, health and social care provision for children and young people with SEN or disabilities – this should include online and blended learning;
• Arrangements for identifying and assessing children and young people’s SEN – this should include arrangements for Education, Health and Care Needs Assessments;
• Education provision and post-16 education and training provision;
• Information about provision to assist in preparing young people for adulthood;
• Arrangements for travel to and from education institutions;
• Childcare, including suitable provision for disabled children and those with SEN;
• Support available to young people in higher education, particularly the Disabled Students Allowance (DSA) and the process and timescales for making an application for DSA;
• Arrangements for resolving disagreements and for mediation, and details about making complaints.

The Local Offer must include provision in the local authority’s area, and also provision outside the local area that the local authority expects is likely to be used by children and young people with SEN for whom they are responsible and disabled children and young people. This could be provision in a school or further education college in a neighbouring area or support services for children and young people with particular types of SEN that are provided jointly by local authorities.