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Parents, researchers and charities join forces to create new resource for parents of children with learning disabilities.

The University of Warwick, Mencap, Cerebra, and the Challenging Behaviour Foundation have teamed up with parents of children with learning disabilities to produce a new Parent’s Guide on improving the well-being of young children with learning disabilities. The guide is being launched today (25th May) in Belfast and you can download the the booklet here.

Research has shown that young people with learning disabilities face more barriers to achieving well-being than children without a learning disability, but also that there are practical steps and strategies which parents can take to change this.

Combining the practical wisdom of parents with insight from the University of Warwick’s twenty years of research into the wellbeing of families of children with a learning disability, the new guide presents hints and tips, backed up by research, for parents to use in their family lives to promote the well-being of their children and to develop positive family relationships.

The Parent’s Guide has been created to help parents support the well-being of children from 0 – 5.   It offers suggestions on ways to build and support warm, positive family relationships, and also includes a chapter on activities parents and siblings can do to support the development of a child with learning disabilities.

Each chapter includes advice from parents, suggested activities, and space for personal notes and reflection.

Parents invited to give feedback on the guide befor its launch said:

  • “The tone of the booklet is really reassuring, and easy to understand. It makes a nice change from the booklets we usually read that are full of jargon.”
  • “The best bit of the booklet for me is hearing about other people’s experiences and coping mechanisms. It makes me realise that we aren’t alone. I just wish we had had something like this when our son was born.”
  • “Every chapter is so relatable, and it’s so useful to read about all of the activities.”
  • “I want to complete the reflection activity and review this to see if I did set some time aside for myself. I think that putting it somewhere I can see it, like on the fridge, will remind me to do it.”
  • “I think that this booklet is amazing information for parents to know.”

The guide has been written by Dr Samantha Flynn, Dr Vaso Totsika and Professor Richard Hastings of the University of Warwick’s Centre for Educational Development, Appraisal and Research (CEDAR), in collaboration with family carers of children with learning disabilities, Margaret Kelly and Joanne Sweeney of Mencap Northern Ireland, Tracy Elliott from Cerebra and Viv Cooper OBE and Jacqui Shurlock from The Challenging Behaviour Foundation.

The guide is supported by a policy briefing which you can download here:

Policy briefing

Dr Totsika said:

“We wanted to share what CEDAR has found out about the best ways parents can  support the well-being of children with learning disabilities in a format that was easy to understand and also easy for parents to put into practice.

“We are very grateful to the parents who worked with us on the Guide to put our research into context, and share their own experiences of supporting a child with learning disabilities through examples from their own lives.”

Margaret Kelly, Director of Mencap NI said:

“We are delighted to have worked alongside the University of Warwick, parents and various organisations to produce this wonderful guide to help support parents of young children with a learning disability.

“There are currently 5,000 children with a learning disability under the age of seven in Northern Ireland and we believe every young child with a learning disability should have access to early intervention services that support their development from birth.

“At Mencap, we are committed to ensuring children with a learning disability and their families have access to effective early intervention services and approaches and we believe this book will be of support to so many parents of children with a learning disability.”

Tracy Elliott, Head of Research and Information at Cerebra, said:

“Cerebra is the charity that works with families who include children with brain conditions.  By listening to families we know that one of their key concerns is for their child’s well-being, but they often question what well-being means for their child and how can they promote it.

“Using research evidence, this booklet will answer key questions families have and give them ideas of what they can do to enhance their child’s and family’s well-being.”

Jacqui Shurlock, Children and Young people’s lead at the Challenging Behaviour Foundation said:

“The Challenging Behaviour Foundation supports families of children and adults with severe learning disabilities whose behaviours are described as challenging.

“Families tell us that it is really difficult to get good information or support when children are small and that sometimes professionals dismiss their questions or concerns about how to manage day to day life.  Families want the right information at the right time, presented in the right way.  This booklet is a real step in the right direction.  We hope families will find it useful and we very much hope to see other researchers following this example.”

Development of this booklet was supported by an award from the ESRC Impact Acceleration Award of the University of Warwick (ES/M500434/1).

The research that primarily fed into this booklet has been funded by a grant from the Baily Thomas Charitable Fund (TRUST/VC/AC/SG/4016-6851). Some of the previous research that was included in the booklet had been supported by the Economic and Social Research Council.

Mencap, Cerebra, and the Challenging Behaviour Foundation have provided support for a number of the studies included in this booklet, both financial and collaborative.

 

 

Why should I take part in research about families of children with learning disabilities?

University of Warwick logoThe CEDAR research centre at Warwick University needs 1000 children with learning disabilities and their families to help with a research project.

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour, considers how research can help families like hers:

If someone had asked me to help with a research project when my son James was little, I would probably have asked them to go away. I was usually very tired and grumpy, because James didn’t sleep through the night. He is autistic and has learning disabilities. He often woke in the early hours and because he needs one-to-one supervision, I had to be awake too. My joints ached from moving and handling him, as he is a wheelchair user and doubly incontinent. All of his care needs were carried out by me or his Dad and despite the hoists in our house, this physical care was time consuming and heavy work.

James is now 17 and goes to a specialist boarding school, so I get a reasonable night’s sleep. If someone asked me to help with a research project today, I would be much more co-operative. But rest is not the only thing which has changed my approach. I have come to appreciate just how powerful evidence can be in influencing government policy and how it can result in more investment for disabled children.

When James was 5, family life was very difficult. He was frightened of leaving the security of the house and had a phobia about getting in the car. As a result, his brother and sister ended up trapped at home a lot of the time. I was deeply worried about them. What we really needed was someone to look after James to give us a break, so we could go out to the cinema, or for a pizza. Eventually we were referred to the social care department of our local authority, as a priority for support. Despite this, the council refused to fund any respite care and so began a long battle.

Six years later, for the first time local authorities were placed under a specific legal duty to provide short breaks for carers of disabled children. I didn’t know then that the law had changed. But looking back, I realise that we had stopped hitting a brick wall in our efforts to get respite and had started pushing at an open door.

The origins of the new law lay in campaigning by disability charities such as Mencap which led to parliamentary hearings, where parents, government ministers and other officials gave evidence. This was later followed by research commissioned by the Every Disabled Child Matters Campaign (EDCM) and the Department for Education (DfE). The research project “Aiming High” took place in two stages, starting in 2009 and ending in 2011. In this way, the families which were involved could be followed over time. The results showed that it was cheaper to provide short breaks to families who needed it, before they became so exhausted that they were incapable of looking after their children at all.

Now, headed by Professor Richard Hastings, The Cerebra Family Research Group based at CEDAR, a research centre at The University of Warwick and the research charity Cerebra, needs 1000 families of children with a learning disability to volunteer for another study over time. They want to look at the wellbeing of families who have children with a learning disability; not just mothers, but fathers and siblings as well. The study will further the understanding of what it is like to raise a child with a learning disability in the UK and will help to shape future support for families and children.

If your child is between 4 and 15 years, 11 months old and has learning disabilities (including children with autism or any one of a number of genetic syndromes as well) please consider taking part. It could make a real difference.

To find out more about the study and to complete the online survey please visit the website. If you have any questions please contact the research team by email: familyresearch@warwick.ac.uk or call 02476 524 139.

©Jane Raca 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

Behavioural interventions for sleep problems in people with an intellectual disability: Do they work?

This is a summary of a recently published academic paper. Sleep problems were identified as one of the least well studied problems in the lives of people with an intellectual disability. It is an issue that affects the health and well-being of those who experience them, and also that of their parents/carers.

Download research summary pdf


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