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Cerebra Sleep Project Study

What is the Cerebra Sleep Project looking at? The study is looking at how sleep difficulties and daytime behaviours interact in children with rare genetic syndromes. What taking part involves Parents/caregivers will first complete an online survey (30 minutes) and a telephone interview (90 minutes). Children will then wear a watch that monitors their sleep over a 10-day sleep assessment. During the sleep assessment, children ...
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LEaP Project Request Form

Contact the LEaP Project If you would like to ask for support from the Project, please read our Guidelines first and then complete the form below. Unfortunately, we can’t provide support with school or educational issues – please refer to our Parent Guides on Education in England and Wales for details of other organisations which may be able to help. When you complete the form below, please ...
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Two girls who have benefited from the work by Cerebra.

University of Warwick

Cerebra funded projects carried out by CIDD include: The 1000 Families Study is a longitudinal study involving a large cohort of families of children with a learning disability living in the UK. The aim of the study is to explore the wellbeing of children with learning disability, siblings, caregivers, and families overall. The Positive Family Connections Programme focuses on helping families to build positive relationships ...
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Our specialist book library provides knowledge and confidence

“My son is a four-year-old non-verbal child with Autism Spectrum Disorder (ASD) and challenges related to restricted eating. As he grows older, his limited communication abilities are becoming increasingly frustrating for him, and we're committed to supporting and developing his communication in every way possible. Cerebra's Library Service has been an invaluable resource for our family in this regard. Navigating the complexities of raising a ...
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School transport, Cerebra help with families of children with brain conditions.

Securing School Transport For Grace

Our Legal Rights Service provides families of children with brain conditions with help when facing difficulties accessing support services they are entitled to. John Furlong,  Information & Support Officer on our LEaP project explains how we recently helped Shona to appeal against her local authority's decision not to provide school transport for her daughter. "Shona, her husband and four children had been forced to move ...
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happy disabled boy painting with his family

Positive Family Connections Report

Our partnership with Centre for Research in Intellectual and Developmental Disabilities (CIDD) at the University of Warwick focusses on family research that aims to better understand and improve family well-being. In 2021 we gave a research grant to fund the development and initial research evaluation of the Positive Family Connections Programme. Positive Family Connections is an online programme to help support positive family relationships and ...
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Survey

Have You Applied for a Disabled Facilities Grant (DFG) for your Disabled Child?

This is your chance to feed back your experience of applying for a Disabled Facilities Grant to the government because the Levelling Up, Housing and Communities (LUHC) Committee recently launched an online survey for its parliamentary inquiry looking at what Government can do to ensure disabled people have access to accessible and adaptable housing in England. The survey is designed to gather disabled people’s views ...
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cerebra annual conference

Cerebra Legal Entitlements and Problem-Solving Project Conference

On 18 October 2022, the University of Leeds School of Law hosted the Cerebra Legal Entitlements and Problem-Solving Project Conference: ‘Addressing commonly occurring social care difficulties encountered by disabled children and their families’. Over 150 participants attended the event online and in person, predominantly parent carers of disabled children as well as policy activists from Disabled Peoples and Carers organisations and statutory sector Children’s Services ...
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a young boy sat at a desk looking at an iPad

A response to the SEND Review: Right support, right place, right time.

This is our response to the SEND Review: Right support, right place, right time. This response is prepared on behalf of the Cerebra Legal Entitlements and Problem Solving (LEaP) Project. The LEaP Project is an innovative problem-solving project that helps families of children with brain conditions cope with the legal barriers they face. We listen to families and help them get the knowledge they need ...
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Understanding atypical patterns of autism in individuals with genetic syndromes associated with intellectual disability

Dr Jo Moss, Lecturer in Psychology at the University of Surrey, opened the February CEDAR seminar by sharing a story of a young man who had a rare genetic syndrome, but who also showed autism characteristics such as repetitive behaviours and a strong preference for routine from a young age but had never been diagnosed with autism. When he transitioned to college, his routine was ...
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Toy and Book Library