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Support for parents of disabled children

Information, advice and support for parents and carers of children with disabilities.

You’re not alone

If your child has a disability the future may seem like a daunting struggle, not just for them, but for you too. The word ‘disabled’ covers a very wide range of different conditions and it is estimated that some 15% of people in the UK experience some form of disability at some time in their lives. Remember you and your child are not alone. The government, local council, health and education authorities provide a wide range of benefits, facilities, support and advice for disabled children and their carers.

Legal protection

The law especially protects your child. The Disability Discrimination Act makes it unlawful for any service provider (including schools, businesses and organisations) to treat disabled people less favourably than other people because of their disability. It also means they have to make reasonable adjustments to make their services accessible to disabled people.

Health

From the start, your GP and your local health authority are there for you. They will provide the help you need to discover and assess your child’s disability. They will help you plan the treatment, therapy, equipment and ongoing medical care that your child may need.

Benefits

There are several specific benefits that you could receive to help you with the costs of caring for a disabled child. These include Disability Living Allowance, Carers Allowance, help with extra housing costs and the ‘carers’ blue badge scheme’. Further benefits include free dental treatment and prescriptions, help with the cost of glasses and in some circumstances travel to hospital, school meals and even road tax exemption.

Education

Depending on their kind of disability, your child may benefit most by attending a special school – an environment specifically designed to match their educational needs. Alternatively your child may receive the extra support required through the special needs provision available in a mainstream school. Your local council and health service provider will help you assess your child’s special educational needs and recommend the most appropriate way forward for their education.

Extra support

Your council can provide extra support for you and your child. This can include special leisure facilities and advice and support for people like you. There are a number of support groups for disabilities and specific conditions.

The Network

The Network is a South Gloucestershire Council secure database with names, addresses and other basic details of disabled children/young people aged 0 -19 years who live in South Gloucestershire. The details on it can only be accessed by authorised council staff and NHS South Gloucestershire staff to send out relevant information to families, to plan appropriate services and consult with parents and disabled children/young people. Signing up to The Network is voluntary but it enables you to receive mail outs such as details of holiday activities, play schemes and information about service developments.  For more information visit The Network page on this website which can be found on the Disabled children, young people and their families.

Supportive Parents

Supportive Parents is a parent-led organisation providing the Parent Partnership Service for Bristol, South Gloucestershire and North Somerset. This service is confidential and provides independent parental support to parents of children with special educational needs. They offer information and support by means of a telephone information and support line, face-to-face support at meetings and help with written information to enable parents to play a more active role in their child’s education. Supportive Parents encourages partnership between parents and professionals and gives feedback on their service to education providers. This service is available 10am – 2pm, Monday, Wednesday and Friday during term time only. Information and Support Line: 0117 9897725. Website: www.supportiveparents.org.uk

South Glos Parents and Carers

South Glos Parents and Carers previously Our Voice Matters is a group of parents and carers in South Gloucestershire with children and young people who have a disability or additional needs. We are helping to improve the services and support available for families in similar situations by working with the Local Authority and NHS South Gloucestershire . We experience it, so our voice matters!  Our website is: www.sglospc.org.uk

In summary

  • Disability affects some 15% of people in the UK at some time in their lives.
  • You can’t prevent your child’s condition but you can minimise the disability they experience by ensuring that they get the best support available and remembering that they have rights.
  • Your child is protected by the Disability Discrimination Act.
  • The government, your local council, education and health authorities are there to help.
  • Don’t think you have to go it alone. Get as much information as you can about your child’s condition.
  • You may be able to receive financial help to assist with caring for your child. Find out what services, support, benefits and advice are available and make contact.

Support groups, parents’ groups and other organisations are out there to help you cope. Contact them and they will be able to give support and advice, as there are others like you.

Helpline telephone numbers

  • NCH – The Children’s Charity: 0845 7626 579
  • Contact a Family: 0808 808 3555
  • Supportive Parents: 0117 9897725
  • South Glos Parents and Carers: 01454 501009
  • The Child Health and Disability Team (for South Gloucestershire): 01454 866259 ​
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