Support for family carers of children and young people with developmental disabilities and challenging behaviour

Background

This study gathered information about perceptions of family carers of children and young people with developmental disabilities and challenging behaviour of the help, support and treatment received from services and professionals.

Methods

66 family carers completed postal questionnaires on the nature of, and their satisfaction with, services, professional help and advice received in respect of their family member’s challenging behaviour.

Results

Most carers were dissatisfied with support and services received. Almost half reported receiving no professional input or none that was helpful. Over two-thirds reported receiving respite care but, in a third of these, the child had been excluded because of challenging behaviour.

Conclusions

Families of children with challenging behaviour often do not receive services and supports that they find helpful. Treatments provided are not always evidence-based. The “rationing” of services creates a danger of inequality of access. We need a more proactive approach to identifying and meeting the need for family support.