Looking after your own child is the most natural thing in the world, so when your child is disabled or has special needs you may not automatically think of yourself as their carer.
Hard as it may be, if you can accept your role as your child’s ‘carer’ alongside your natural role as a mum or dad, you will gain additional legal rights and entitlements which will help you get the support you need.
Your local Family Information Service can offer you advice about support services for disabled children and their families.
Carer’s needs assessment
As your child’s carer you are entitled to a carer’s needs assessment to find out what matters to you and how you might be supported to meet your own well-being needs.
For example, if you regularly miss out on sleep, you might need the occasional night or weekend off . Or perhaps you have stayed at home for several years but now wish to return to work.
If you are the parent of a child who has care and support needs which are being met by your local council, you can choose to receive direct payments and manage them on your child’s behalf.
Transition planning is about helping your disabled child to plan ahead so that they get support to lead the life they want, including what they might want to study, what job they might do and where they want to live.
Transition planning begins when your child is about 13 and continues for several years until your child is an adult.
Financial and other benefits
Depending on your child’s disability, you may also be eligible for benefits like the Disability Living Allowance (for children) and extra Child Tax Credit.
Many charities help disabled children to go on holiday, buy computers or have great days out. Find out what help is available.
Check you are getting the right amount of Universal Credit (which is replacing Housing Benefit) and Council Tax Reduction as these vary if you have one or more children on DLA or if your children are unable to share a room because of disability.
Blue Badge Scheme
Depending on your child’s disability, you may be entitled to a Blue Badge.
Automatic entitlement: children over two years old are receiving the higher rate of the mobility component of DLA (see above) or severely sight impaired.
You may also be eligible if your child is under three years old, and:
- you need to carry bulky medical equipment
- the child needs to be close to (or travel quickly) to life-saving equipment
In August 2019, the Blue Badge scheme was extended to include people with 'hidden disabilities' like autism and learning disabilities.
Apply directly to your local council.
Combining work and caring
Your local Family Information Service can offer advice on a wide range of topics, including childcare.
Working Families also offers support and advice on childcare and other issues.
Meeting other parents
Many national charities have local groups where the parents and families of children with specific disabilities can offer advice, share experiences and even meet up for leisure activities and days out.
Contact a Family has a comprehensive database of charities which support disabled children. The Family Fund also gives discretionary grants to families with severely disabled children under 18.
Support for your other children
Life can be hard for the siblings of a disabled child, who may sometimes long for an ordinary life just like their friends. Depending on the child’s age, they might not fully understand their brother or sister’s needs, or why they can’t play or do the same things as other children.
Young Sibs is an online forum where children and young people with disabled siblings can chat to each other about their lives and interests.
Children and young people play a big role in the lives of their disabled brothers and sister, talking and playing with them, and often helping them to develop new skills.
When children carry out significant caring and household tasks, they are considered to be young carers. Young carers are entitled to their own carer’s needs assessment which considers their own needs, particularly their educational needs and long-term aspirations.