Parents often struggle to get the right support for their disabled children. To help with this, Cerebra have developed an accessing public services toolkit to support disabled people, families and carers who are encountering difficulties with statutory agencies. Derek Tilley from Cerebra explains how the toolkit can “help unpick commonly experienced problems and to offer effective strategies for resolving them”. 

Struggle to get support

Disabled children and their families sometimes need extra support in order to have a normal everyday life. For example, help with bathing or eating, moving around or communicating. Public bodies have legal duties to meet these needs by providing support, such as someone to help with personal care at home, specialist equipment, adaptations, short breaks or therapy services. However, we know from our work at Cerebra with families that, in practice, parents often struggle to get the right support for their children and a lack of support can harm the health and well-being of the whole family.


Research we carried out with Cardiff Law School in October 2015 revealed that families of disabled children are experiencing substantial delays in getting an NHS diagnosis and too few parents are being 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. Moreover, parents are reluctant to complain about any of this and, if they do, their concerns are often not dealt with.

Accessing Public Services toolkit

Consequently, in 2016, and with the support of the Economic and Social Care Council, Cerebra published an accessing public services toolkit to support disabled people and carers who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services.

It is true that UK law provides powerful rights to such support services but this on its own can be insufficient.

Luke Clements, solicitor and Cerebra Professor of Law at Leeds University, developed the Toolkit with the input of parent-carers. Luke 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”.

Practical guide to unpick problems

The Toolkit is a comprehensive, practical and easy to use guide to help families resolve difficulties with their statutory health, social care and education support services. It aims to help unpick commonly experienced problems and to offer effective strategies for resolving them. It:

  • considers nine 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 meetings
  • 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 myths.

Workshops for families

In order to reach as many families as possible Cerebra has presented the Toolkit free of charge to parent-carer groups throughout Wales, England and Scotland. To date we have held 74 workshops and we looking to hold more throughout the UK. Consequently, we are currently exploring the possibility of collaborating with Learning Disability Wales to increase our coverage of Wales and also extend delivery to support organisations to increase their legal capabilities to better assist parent-carers and their families. We look forward to seeing you at a workshop in the near future!

Cerebra – who we are

Cerebra is a national charity based in Carmarthen and supports families who have children with a disability arising from a brain condition. We are essentially a research charity funding a number of medical research groups and the Legal Entitlements and Problem-Solving (LEaP) Project which researches into the problems families have accessing services owed to them by public bodies such as local authorities and the National Health Service (NHS). The LEaP Project is headed up by Luke Clements, Cerebra Professor of Social Justice at Leeds University. Its aim is to better equip families to resolve problems and to enable statutory agencies to improve their decision-making processes and so reduce the likelihood of such problems arising in future.

Derek Tilley

LEaP Team Direct Number: 01267 242582