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.
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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