Help for Carers > Different caring situations > Parent carers

Parent carers

Education

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

New Disability Living Allowance rules for some blind children (added 31.5.11)
From 11th April 2011 children from the age of 3 years with 'the most severe visual impairment' will qualify for DLA at the higher rate for mobility. To qualify your child must be certified as severely sight impaired; speak to your ophthalmologist for details. If you think your child may be entitled to the higher rate, contact the DWP on 08457 123456. The RNIB has a factsheet about the new rules - www.rnib.org.uk



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.


Challenging behaviour: a guide for family carers on getting the right support (added 6.5.11)
The Challenging Behaviour Foundation has three new 'At a glance' guides aimed at family carers supporting people whose behaviour is described as challenging are now available. There are separate guides for adults, teenagers and children. The guides have been developed in collaboration with the Social Care Institute for Excellence (SCIE). The guides help family carers to: Understand what good support and services look like; Work in partnership with staff who are involved with the family; and find information on what to do and who to contact if the family's needs are not being met. To download the guides visit: www.scie.org.uk/publications or www.challengingbehaviour.org.uk


Family Companion to the ACT care pathway (added 11.2.11)
ACT has developed 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. Each section can be downloaded separately or in full from www.act.org.uk. Parents and carers can order a free printed copy from Susannah Woodhead at ACT, Tel: 0117 916 6422, Email: susannah@act.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.

You can get more information from:

• Wellspring - Wellspring is a West Sussex charity for children and young people with disabilities and their parents and carers
• 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.
• 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.

• 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
• www.youngminds.org.uk - YoungMinds is a national charity committed to improving the mental health of all children and young people.
• 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

There are people who can help:

West Sussex Carers Support Services

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