Cerebra, a national charity for children with neurological conditions, has published a new toolkit to support disabled people and carers who are encountering difficulties with statutory agencies in relation to health, social care and education support services.
worked with Cardiff Law School on the development of the toolkit
and found that families of disabled children often experience
substantial delays in getting an NHS diagnosis and too few parents
are given written information when they do receive their diagnosis.
Support services are not always offered and, when they are, they
often do not meet the needs of the family. The research also
revealed that parents are reluctant to complain about any of this
and, if they do, their concerns are often not dealt with
Professor Luke Clements, Cerebra Professor of Law and Social
Justice, Leeds Law School and author of the Toolkit explains: "The
law can be complicated and difficult to understand. Even when you
know what your rights are, it can be daunting, exhausting and
sometimes intimidating to challenge public officials. There is a
power imbalance and much research suggests (and indeed the
Government accepts) that many families are fearful that complaining
may make things worse".
The toolkit is a comprehensive, practical and easy to use guide to
help families resolve difficulties with statutory health, social
care and education support services. It aims to help unpick
commonly experienced problems and to offer effective strategies for
resolving them. The toolkit:
• considers 9 general categories of dispute, from inter-agency
disputes and complex cases to delays and resource issues, and
offers detailed advice for resolving them
• identifies key factors that can empower people to claim their
rights and to challenge failures when they occur
• offers advice on preparing for, attending and following up on
• sets out a series of template letters that families can use in a
variety of situations.
It also provides a 'jargon buster', an explanation of what public
authorities must do, and explores a number of commonly held
To accompany the toolkit, a central website www.difficultbox.com is being developed with
links to law, practice and self-help guides that have been produced
by many charities and support organisations. The facility to post
comments and suggestions on the site is being developed.
The Problem-Solving Toolkit is free to download here.
The publication of the Toolkit has been made possible by a 2015
Economic and Social Research Council (ESRC) 'Impact' award in
addition to financial support from Cerebra.