Siblings of people with disability

Posted - December 2020 in Living with HSP - Management & Treatment News

Challenges and needs of the sibling role

 

Siblings of people with disability (PwD) whether as children or adults, face challenges and have needs in their sibling role that have received little acknowledgement and attention overall.

 

This is not the same as the issues and demands of being a carer, which may be another role for people in a sibling relationship with a brother or sister with disability.

 

 

Siblings Australia is a charity that aims to strengthen families with a focus on siblings within families of people with disability.

 

Siblings of children/adults with disability

The sibling relationship

  • Siblings are important, both in terms of their own wellbeing but also what they contribute to the PWD
  • Sibling relationship a key lifetime relationship, regardless of any carer role

 

Sibling challenges

Sibs are largely overlooked in policy and programs.

Mapping Project 2017 survey of parents, providers and adult siblings highlighted the challenges for siblings and the little support available. Stresses include:

  • Identity issues – who am I?
  • Isolation – family/peers
  • Confusion, lack of information
  • Difficulty expressing feelings
  • Anger/resentment/grief
  • Guilt, ‘secrets’, shame, low self-esteem
  • Depression/anxiety
  • Extra responsibility/family stress
  • Pressure to achieve
  • Concerns re future – career, where live, having children

 

Sibling needs

  • Information
  • Strong connections – family, peers
  • Help with expression of mixed feelings
  • Assist relationship with PWD – managing difficult/aggressive behaviour, having fun
  • Identity development
  • Help with managing others’ reactions
  • Support with asking for help
  • Support with community access
  • Contact with other siblings of PWD
  • Understanding from parents/professionals

I felt completely isolated. I thought I couldn’t share any of that part of my life with my friends. They didn’t understand and I felt alienated from them. Other kids never had the same responsibility.

Discussions amongst my non-disabled siblings led us to observing that at no stage in our lives has any professional, agency or service ever asked us if we were ok, how did we feel, did we need anything or offered us support.

Protective factors

  • open communication within family
    • information, permission, feel special
  • strong connections with family/friends
    • sense of value, positive meanings
  • outside sources of support e.g. school, community programs
    • skills/coping strategies/ how ask help
  • connections with other siblings
  • help with independence/future

Support options

  • individual sib
    • listen, give permission, share resources, help develop skills, encourage social networks, connections
  • assist parents to support sibs
  • family programs/counselling
  • schools, community
  • siblings in groups (not suitable for all)
    • formal/informal
  • ADULTS

Siblings Australia

Our Mission Siblings: Acknowledged, Connected, Resilient

  • Awareness/advocacy/research
  • Website/resources
  • Online networking – teen and adult sibs
  • Parent & professional learning/NDIS 1-on-1 parent sessions
  • SibworkS facilitator manual/booklets
  • ILC funding 3 years:
    • build capacity siblings
    • new website + e-learning + national guidelines sib support
    • family ‘voices’
    • develop sustainability for organisation

Summary

Sibs need more recognition (NOT as Young Carers, as siblings)
EARLY and LIFELONG support leads to stronger sibs and stronger sib relationships.

Sibs more able to develop a ‘good life’ for themselves but also more likely to contribute to a ‘good life’ for their brother/sister with disability.

 

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