Family support agencies

Overview

Having a child with epilepsy often places additional demands on parents, both emotionally and practically. Siblings of children with epilepsy are similarly affected and have to undergo the same process of adjustment to the diagnosis as parents.

There are many agencies available who can provide support not only for patients with epilepsy, but also for parents, carers and siblings.

 

Epilepsy specific

Epilepsy Action

www.epilepsy.org.au

  • Community support organisation for families and children living with epilepsy. 
  • Includes information on services such as individual service plans, individual client education, seizure management planning, and camps for young people.
  • Provides information regarding epilepsy for families, children and young people.

Epilepsy Australia

http://www.epilepsyaustralia.net/

  • A national coalition of Australian epilepsy organisations working together to keep communities informed on the latest medical breakthroughs, social research, publications, news and policy about epilepsy.
  • Their vision is for inclusive communities where people with epilepsy can live and participate free of stigma and discrimination.

Neuroscience for Kids

What is a seizure?

 

Parent and carer support

Raising Children Network

www.raisingchildren.net.au

  • A web-based resource for parenting newborns to adolescents, including a section on children with special needs.
  • Information on your child’s disability and your feelings, dealing with the reactions of others, sibling issues, services and supports, working with professionals, and disability rights and the law.
  • Discussion forum for parents to share ideas and connect with other parents of children with disabilities.

Carers Australia

www.carersaustralia.com.au

  • National body representing carers in Australia. Works with carer associations in each state.
  • Aims to improve the health, wellbeing and resilience of carers.
  • Provides telephone support.
  • Register for “Better Start” initiative which provides funding for early intervention for children with certain conditions.

Carers NSW

www.carersnsw.asn.au

  • NSW carer organisation.
  • Aims to improve the health, wellbeing and resilience of carers.
  • Phone: 1800 242 636

Young Carers NSW

www.youngcarersnsw.asn.au

  • Provides information for young people (under 25 years) who are carers.
  • Provides a forum for young people to have a say and share ideas which is moderated by a trained counsellor.

Australian Government Carer Gateway

https://www.carergateway.gov.au

  • Carer Gateway is a new national service funded by the Australian Government.
  • Carer Gateway includes a website and phone service for carers to access practical information and support.

     

    Siblings and young people

    Siblings Australia

    siblingsaustralia.org.au

    • Provides support for brothers and sisters of people with special needs, including people with disabilities. Provides information for parents on issues for siblings.
    • Print and web-based resources and networking opportunities for siblings.
    • A web forum for siblings only (young, teen and adult siblings).

    Livewire

    www.livewire.org.au

    • Provides a free and safe online community for children and young people (10-21 years) with a serious illness, chronic health condition or disability. Also provides separate online communities for the siblings and parents.
    • Children, young people, siblings, and parents can connect with others in a supportive environment.

    Reach Out

    au.reachout.com

    • Web-based service that provides young people with information, support, advice and connections to help them manage a range of health issues to improve their mental health and wellbeing.
    • Aims to build the skills of young people, provide information, support and referral.
    • Moderated by trained staff.

    Mental Health Handout - Printable

    The Mental Health Youth Services Directory for patients and families provides contact details for a range of mental health services available in Greater Sydney and regional NSW. It also provides links to electronic resources and e-mental health programmes as well as phone numbers for agencies that provide support via telephone. The list is not exhaustive but should serve as a guide on resources available.