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Parent carers


It is often worth remembering that you are not alone.
Every day over sixty children in the UK are born or diagnosed with a serious disability and the vast majority of them are cared for at home.

As a parent carer your concerns are likely to be about:
  • Your child's health
  • Your child's education
  • Your own ability to provide care for your child
  • The rest of your family's needs; the impact on the lives of any other children you have (Young Carers)
  • What will happen as your child grows up


Advice to parents of children with special needs when coping with carers
It is important that your child's rules and routines are not disrupted. If your child gets out of a routine it will be difficult to get them back on track. If their bed times are disturbed they may develop sleeping problems and if their meal times are out of sync they may become moody and tired. It is also important that your child's rules are enforced as consistently as possible. If there are different rules to follow whilst under the care of different people then they will become confused and may become quite difficult.

How can you stop their rules and routines from being disrupted by carers?
Talk with your child's carer and tell them exactly what behaviours are acceptable or unacceptable for your child, as well as your child’s rules and routines, and that it will be damaging to your child if they are disrupted. If you are away from your child for long periods of time, such as at work during the day, you may feel guilty when you return. This may cause you to relax the rules and routines, allowing your child to go beyond the set boundaries. It is important not to let this happen; stick to the set rules and routines as much as possible.


e-learning about personalisation and personal budgets (15/7)
For parents and carers of disabled children and young people, aimed at explaining the key points about personalisation, personal budgets and how they may impact on their family life. To access the free eLearning, create an account at: http://elearning.kids.org.uk. The Parent’s Handbook in long and short versions can be downloaded from: www.kids.org.uk

A guide for fathers of disabled children (3/6)
Having a disabled child affects all members of a family. As a father of a disabled child you will have to adapt to a new and sometimes challenging set of circumstances. This guide will help you with the practical information you may need and help you understand how other fathers have experienced having a disabled child. www.cafamily.org.uk

The Impact of Caring on Families - information sheet (8.4.13)
The Challenging Behaviour Foundation have produced an information sheet for parents and carers, siblings or other relatives of a child with challenging behaviour. It covers diagnosis, mental and physical health of carers, sleep and finances. It also gives practical guidance and signposting to other sources of help. Download the information sheet from www.challengingbehaviour.org.uk

Understanding your child’s behaviour (25.2.13)
Updated version of this guide from Contact a Family includes tips for parents on how to understand and communicate better with their child, how to help their child with their behaviour, as well as details of people and organisations who can support parents and families. Download the guide at www.cafamily.org.uk

Early Years Developmental Journal (25.2.13)
This journal is designed for families, practitioners and others to use as a way of recording, celebrating and supporting children’s progress. It supports key working by helping everyone involved with a child to share what they know and discuss how best to work together to support development and learning. Before you start to use the Journal, read the ‘How to Use’ guide, which can be downloaded at: www.ncb.org.uk

Template letter for parents who have been refused an assessment (10.4.12)
Template letter to help families with disabled children to gain an assessment for social care services. The letter is intended to help parents who have been told that their council will not assess their disabled child in relation to short breaks or any other specialist social care service. Download the template at: www.councilfordisabledchildren.org.uk

Starting Point online resource Starting Point: a guide for parents whose child has a vision impairment
Online resource for parents - Starting Point: a guide for parents whose child has a vision impairment is the result of a collaboration between NBCS, RNIB, Guide Dogs, Sense, Action for Blind People, and Great Ormond Street Hospital for Children NHS Trust. Read more at: www.nbcs.org.uk/startingpoint

Family Companion
Together for Short Lives have produced a free resource for family members of children who have been diagnosed with a health condition that means they may not live to reach adulthood. The Family Companion provides clear, accessible information to help you understand what should happen at each stage along your child’s care journey – what you can expect from professionals, what you are entitled to and what choices you have. It mirrors the care pathway that professionals will be working through, and addresses the issues that matter to you. Download a copy from www.togetherforshortlives.org.uk

The Parent Carers Planning Group acts as a forum for parent carers of children with special educational needs/disabilities and their representatives to meet with officers and to present their views on services and shape the development of services. Parents who wish to be involved should phone the Group on 01243 752158.


Small envelope representing information You can get more information from:

  • Wellspring - small logo Wellspring - Wellspring is a West Sussex charity for children and young people with disabilities and their parents and carers
  • West Sussex County Council logo Child Disability Teams North and South
  • Face to Face Befriending Scheme
  • - Face to Face provides a befriending service for parents of children with disabilities
  • www.after16.org.uk
  • - website for disabled young people in transition to adulthood, their families and people they work with.
  • logo for Brainwave www.brainwave.org.uk
  • - the Brainwave Programme is aimed at realising the potential of children aged 6months to 12 years with developmental delay, a brain injury or a genetic condition.
  • Contact a Family logo www.cafamily.org.uk/ - Contact A Family is a national charity providing advice, information and support for families with disabled children. Produces a range of useful factsheets available to download from the website
  • Young Minds logo www.youngminds.org.uk - YoungMinds is a national charity committed to improving the mental health of all children and young people.
  • Special Needs Children logo www.special-needs-kids.co.uk - Special Needs Kids is an information directory and shopping site to help parents and carers of children with special needs


Icon showing a help image There are people who can help:

small logo from Carers Support West Sussex Carers Support West Sussex



If you are having trouble finding the information you need on this website you could try using one of the following search options:

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You can use this facility to search the Carers Online database for organisations in West Sussex that may be able to help you.

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