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Chapter: Paediatrics: Child development

Paediatrics: Managing and living with disability

A diagnosis of a child with disability is invariably devastating for the family concerned.

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.

 

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Paediatrics: Child development : Paediatrics: Managing and living with disability |


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