Meet our Scottish Facilitators

One challenge that parents have told us that they struggle with is dealing with statutory agencies in relation to the provision of health, social care and education support services. We listened to this concern and have funded research to explore practical and effective ways of resolving the commonly occurring problems families face when dealing with public bodies. As a result we produced our Accessing Public Services toolkit and started running workshops alongside our toolkit.

Following on from the success of both the toolkit and accompanying workshop, the toolkit has been adapted so that it is relevant for families who have a child with a brain condition who live in Scotland. The toolkit is free to download from our website.

To help us run our Scottish toolkit workshops we are delighted to have taken on 5 parent/carers, all of whom have children with a brain condition and who have also experienced the difficulties that many families face in accessing public services.

We value their experience, skills and knowledge of disabled children and the Scottish social care system. This is our opportunity to introduce them to you.

If you are an organisation in Scotland and would like to hold one of our workshops, please get in touch with Beverley Hitchcock on beverleyh@cerebra.org.uk

Gail

My name is Gail McKeitch. Whilst born and bred in Glasgow, I now live in Aberdeenshire and have done for 30yrs. I’m married with three adult sons, two of whom have an autistic spectrum disorder. I have previously worked within HMRC, National Autistic Society, VSA Carers Centre and more recently with a private social care company. As a volunteer I facilitate an autism specific support group known as NAS Ellon Branch as well having my own autism consultancy. Yes, I like to keep busy and thrive on a challenge. Looking forward to meeting you.

Laura

I am mum to Tom who is 5, and has a range of complex medical issues including cardiac, respiratory and epilepsy.  Tom would fall into the category of a child with exceptional health care needs, so needs round the clock highly specialised medical care.  We have had some very positive experiences with accessing support, but also some extremely challenging ones.  I am currently part of the Exceptional Families project working with Kindred and the CEN clinical network to improve the services and support available for families like ours. In order to be a strong advocate for Tom, I have had to arm myself with as much information as I could, be very clear about articulating his needs, and not be afraid to have difficult and sometimes emotional conversations with professionals. I’m hoping to help other parents to do the same.

Sam

Hi, I’m Sam and I live near Auchterarder with my husband, 12 year old son, 9 year old daughter and 2 cats! I spend my time caring for my son who was initially diagnosed with Cerebral Palsy at 2, re-diagnosed with Hereditary Spastic Paraplegia at 6, being a Mum, working as a volunteer adviser with Citizien’s Advice and trying (badly) to get fit. Before kids, I spent many years working as an IT Consultant including doing lots of facilitation. I’m really looking forward to helping to run the new workshops in Scotland.

Sharron

I’m Sharron Farrell and I’m the mother of 6 children (think Old Woman who lived in a Shoe!). My eldest son has severe autism and attends a Communication Base in a Mainstream School. I have personal, voluntary, and professional experience regarding the challenges families face in order to access the services they need. I have a background in Biochemistry, Teaching, IT, and Autism.
 

Judith

Hi, my name is Judith Knox and I live in Fife with my husband and 10 year old son. My son has complex needs and I am his main advocate in ensuring he receives the support he requires to fully meet his needs. Having been employed within both the NHS and local authority Social Work Service for many years I was fortunate to have an understanding of the local landscape and systems.  This has been a great help in navigating my way through the bureaucracy. To have had access to a resource like the Cerebra Accessing Public Services Toolkit at that time would have been so helpful. My journey to access services and appropriate support for my son continues.  I am currently on a year’s career break to allow me to concentrate on accessing appropriate educational placement for my son. I am thrilled to be part of the team bringing this Toolkit to life across Scotland.

 

 

Why Our Research is Important – Cerebra Family Research Group

Centre for Educational Development, Appraisal and Research (CEDAR)
University of Warwick
Cerebra Family Research Group
“Strengthening families”

Why our research is important

One of the biggest influences on the development of all children is their family. Children with brain conditions are no different to all other children in this respect – their development is also affected by what happens within their family. The context of the family affects all children’s development in at least three ways:

  1. Parents and carers approach parenting in different ways, and how parents raise their children can affect how children develop both positively and less positively.
  2. The economic context in which families live has a big impact on children’s development. This includes poverty, parents being out of work, and factors such as the quality of the housing in which families live.
  3. Parents and other family members who are under significant stress may affect the well-being of children within the family.

Within this context, the research carried out by the team at Warwick focuses on three big issues for families of children with brain conditions, specifically children with a learning disability and/or autism:

  • Demonstrating that the same family factors that influence the development of all children affect the development of children with learning disability and/or autism. We do this by focusing on analysis of large UK national studies of thousands of children that also include some children with learning disability/autism (e.g., the Millennium Cohort Study). The Cerebra 1,000 Families Study is also designed to contribute to this area of research as we can now start to follow these families over time to generate new research findings that can be used to improve family life.
  • How can parents and other family members can be supported to maximise positive developmental outcomes for their children with learning disability and/or autism? We address this issue by developing and/or testing interventions that can give parents key skills to be more effective in their task of raising children with learning disability/autism. We also develop and/or test interventions designed to directly improve parents’ well-being.
  • Attempting to redress the balance for families of children with learning disability and/or autism. Parents and other family members of children with learning disability/autism are typically portrayed as suffering significant stress when raising their children. This is perhaps true, but misses the fact that raising a child with learning disability/autism is also a positive experience and results in many rewards for families. In our research, we explicitly study family members’ (especially parents’) positive perceptions and experiences when raising children with learning disability/autism. The Cerebra 1,000 Families Study has been designed from the start to capture positive experiences as well as the challenges of raising children with learning disability/autism.

Progress from January 2014 to December 2017

Some key indicators of progress from the Cerebra Family Research group are:

  • Recruitment of 1,013 families of children with learning disability (ages 4-16 years) into the Cerebra 1,000 Families Study.
  • We have grown the research group so that by December 2017 there are 14 team members working actively on family research.
  • From a Cerebra investment of £270,000 over six years we have attracted approximately £2.8 million by December 2017 (four years) to support additional family research.
  • Our funding initially included two full time PhD studentships from 2014-2019, and we have used that funding to part-support and attract a total of 10 PhD students – contributing significantly to the size of the future family research community in the UK.
  • We have published 28 scientific research papers, and at least a further 17 outputs disseminating information about family research to family members.
  • We have given 63 conference and other presentations on family research, at least 19 of which were to audiences of family members.
  • We have developed active partnerships on family research with at least 22 UK and international Universities, and have provided training and internships for seven researchers (in addition to our PhD students).
Longer term impact of the Group’s research for families

Our research team’s work is always designed from the start to achieve longer term impact for families. We work with parents and external partners to use the findings from our research to influence policy and practice, and we use our research findings to develop interventions to directly support family members (especially parents). By December 2017, the following illustrate the impact of our research for families:

  • We have partnered with at least 21 non-government and government organisations in the UK and internationally to carry out and use family research. Notable successes include: the use of our family research findings in two NICE guidelines and influencing a further NICE Quality Standard, several reports and guidelines produced as a part of the Transforming Care Policy Programme, and influencing (with Mencap) the Public Health Agency in Northern Ireland to include children with learning disability and their families in their early intervention policy.
  • Our research group has pioneered the development and testing of mindfulness-based interventions to improve well-being for parents of children and adults with learning disability and/or autism. New research funding (from the Baily Thomas Charitable Fund) will test in a Randomised Controlled Trial design whether online mindfulness intervention can help to improve parents’ well-being.
  • We have also tested an early intervention to increase the skills of parents of children with autism (funded by Autistica), and have a new project to test an early intervention for families of children with learning disability (Early Positive Approaches to Support, developed by a team that included Professor Hastings, and funded by the National Institute for Health Research Public Health Research Programme)
  • Working with Cerebra (and Mencap and the Challenging Behaviour Foundation) and with parents, Dr Totsika from the Warwick team is currently developing a booklet translating our research findings into practical advice for families (funded by the Economic and Social Research Council).

You can find out more information about the team at Warwick and watch a video about their research here.

New look library lists

Take a look at our great new Library Lists. We’ve made some changes to make them more user friendly. We hope these changes will help you find the things you are interested in. The Library Book List and the Children’s Book List are ready now on our library page.

We have added more subject areas so you don’t have to look through long lists of book titles. Popular topics like sensory processing disorder and growing up now have their own sections. The Children’s Books List now have the books listed by subject area instead of by age group. So you can now find all the books for children on ‘behaviour’ or ‘feelings’ or ‘for siblings’ together.

If you are already a library member, why not take a look and let us know what you think. If you haven’t joined the library yet, why not take a look to see what we’ve got.

We are in the process of updating our Sensory Toy List which will have new write ups and information about the toys with pictures taken of the sensory toys here at Cerebra HQ. It will be available soon but in the meantime we have a temporary Sensory Toy List which includes all the great new and replacement toys purchased with the money we received from Children in Need.

DLA Workshops for Professionals

Guide to claiming disability living allowanceAs part of Cerebra’s programme of information workshops we have developed a Disability Living Allowance workshop for professionals. This is a full-day event (10am -4pm) and aims to give good basic information about DLA, as well as looking in more detail at the two components and how they are awarded.

The bulk of the workshop is spent giving attendees the skills, in conjunction with Cerebra’s DLA Guide, to be able to help parents to complete the claim for, and case studies are used to re-inforce learning. Finally, we look at how to ask for re-assessment of DLA and how to challenge decisions, as well as a very brief look at related benefits.

Our extremely popular DLA Guide goes through each question on the DLA form, giving explanations of what they mean and tips on how to answer them. It also gives advice about how to appeal if you’re unhappy with the decision.

For further information or to book a workshop, contact David Williams at DavidW@cerebra.org.uk.

Caped Crusaders Unite for the Superhero Tri!

Last year, we entered a team of brave superheroes in the very first Superhero Triathlon. The event was a huge success and so this year the Super Hero Series is back and better than ever.

Founded by Super Paralympian Sophie Warner, it’s “the UK’s one and only disability sports series for the Everyday Superhero!”

Cerebra is proud to announce we are once again supporting this epic triathlon as charity friends and will be  Team Cerebra!

This year’s event is taking place on the 18th of August 2018 at Dorney Lake, Windsor. Participants can team up, grab a side kick or fly solo to compete in any of the four unique challenges.

Rhys and Anthony, who took part in the triathlon for us last year will once again be rising to the challenge! We’re looking for eager super heroes who want to join them on team Cerebra. The only requirement is that one person on your team must have a disability and you must have your own equipment to take part in the triathlon.

If you would like to find out any further information about the event or how you can join our team contact mariak@cerebra.org.uk.

Direct Payments Survey

In response to enquiries from our members our Legal Entitlements And Problem-solving (LEAP) team are carrying out an electronic survey to find out what families of disabled children think about the direct payment system.

If you’re already using, will be using or used to use direct payments we would be very grateful if you’d consider taking part in the survey.

You can find the survey here together with more information about it. It should take no more than 10-12 minutes to complete and the responses are totally anonymous. Thanks in advance for helping with this important work.