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Justice Together Avoiding Crisis – A Parent Survey on Support Needed

Respond and Bringing us Together are working in partnership to provide information and support to families of disabled children and young people who are approaching or who are currently in crisis.

A survey of families carried out in late 2015/2016 received responses from families across the whole of England, and it was striking that 24% of the people represented were under the age of 10, and 66% were under the age of 18. Respondents therefore reflected predominantly young people and their families, and it is very significant that a high number of these families have already experienced at least one crisis.Some of the responses were shocking, only just over half of the families reported being given any advice on where to seek help, and even when given advice some families were too exhausted by the caring role to follow it up.

Even when advice and guidance was given, families often found that help was hard to get and inadequate. Generally telephone help lines were not felt to be useful, while internet access, discussion groups and support from other parents were felt to be more helpful.

When families actually found and accessed support there was a 50/50 split between those who found the support package helpful and those for whom it was not helpful.

Families identified emotional support, specialist advice, circles of support, advocacy and legal advice as the top priories to sustain and support them.