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Pitfalls in the parent/professional
A parent and his children

Parents often think that professionals do not understand what it is like to look after a child with complex needs. Parents can also find it difficult when professionals are unwilling to acknowledge parents as experts in their own child's care.

Parents tend to have far broader expertise in their own children than the professionals that they see. This is not to deny the expertise of the professionals. Their skills tend to lie in the generality of an issue, such as the theory and practice of feeding. In contrast, the parent is

the expert on the minutiae of their child's actual feeding – such as feeding patterns, what they like and/or dislike, etc.

This relationship works best when parents and professionals are brought together to help nurture and develop the child's Quality of Life.

The wider
social context
A professional carer and children

Another issue is that professionals sometimes treat the individual but not the social model of disability. This means that the focus of the professional's approach may be more about:

  • How the child can be changed.

Whereas it is also vital to consider:

  • Who else can be changed.
  • Which services support the child.
  • How they can be improved.
Improving services
Boy in walking aid with carer

Select a family with a child with complex disabilities that you teach. Focus on how the services could be improved to affect the Quality of Life for this family.

What could you do to support such improvements?