Paediatrics: Managing and living with disability

Managing and living with disability

A diagnosis of a child with disability is invariably devastating for the family concerned. Parents will react in different ways and their needs and sup-port will vary. Health professionals should provide clear, practical informa-tion and should be open, realistic, and honest in their approach. It is vital not to withhold information.

A multidisciplinary team that comprises specialist paediatricians, physi-otherapists, occupational therapists, language therapists, and specialist nurses (e.g. community paediatric, epilepsy, learning disability) should be involved in the co-ordination and provision of care for the child with dis-ability and their family. There should also be close liaison with social care and education. A key worker should take responsibility for co-ordinating appointments and information.

Many aspects of a child’s disability will change with time and their ongo-ing and long-term needs will require regular reevaluation.

·  Mobility problems.

·  Hearing and vision difficulties.

·  Communication difficulties

·  Self-care and continence issues.

·  Educational provision: special schooling; statements of special educational needs.

·  Feeding difficulties.

·  Sleeping difficulties.

·  Behaviour problems.

Social considerations

These are just as important as the medical needs and social care.is often able to provide support and advice for the family.

A child with a disability is a ‘child in need’ according to the Children Act and therefore is entitled to an assessment, which can include

·  Provision of temporary respite care for parents.

·  Provision of suitable accommodation, e.g. wheel chair access; bathroom access.

• Financial support, e.g. disability living allowances.

Transition of care to adult services must be carefully planned and co-ordinated.