The SibAware pillars

• are designed to be embedded in policy and practice
• are aligned with best practice approaches to working with families
• strengthen the focus on siblings so that they are included in conversations about, and approaches to, working with families.

 

1. Whole family approach.

All family members are recognised and supported. The family is one of the most influential systems in any child’s life – with or without disability. It’s therefore essential that when working with families with disability, we develop a whole-of-family, family-centred approach that centres around a family’s strengths and goals. This type of approach ultimately benefits each family member because it improves the overall family quality of life. This pillar takes a family-centred, strengths-based practice approach. It identifies and supports all the different people who make up the family – this includes siblings, as well as the primary caregivers and the child/children with disability. Additionally, it recognises the importance of:

• each family member, and
• the different relationships family members have with each other on family goals and family quality of life.

2 Prevention and early intervention.

Siblings are provided with support early resulting in better outcomes for the whole family and the community. The support that the whole family can get in the early stages after a person is diagnosed with disability significantly affects how the family functions in the short and long term. Siblings and parents/caregivers are affected when a person is diagnosed with disability. This pillar emphasises that giving the whole family support both early on and over time can benefit the siblings as well as the family itself, and the community. Siblings with a brother or sister with disability can be at risk of developing mental health conditions. It’s therefore important for services to take a preventive approach to mental health, when working with siblings. This approach might include:

• helping parents to support siblings
• identifying protective factors for a sibling, for example, being involved in an activity in the community
• arranging peer support for a sibling
• supporting siblings’ confidence to manage their interactions with their brother or sister
• giving siblings skills to manage others’ reactions

3. Sibling relationship first.

Sibling relationships are crucial, regardless of caregiving. Strong sibling relationships are important for both siblings and the child/adult with disability. Sibling relationships are usually the longest of any relationship and often change over time. They can be positive, sometimes challenging and painful, or all of these experiences mixed together. From an early age, siblings are part of the first social network for a child with disability. As well as being a playmate, the sibling often plays a key role in helping the development of their brother or sister with disability^REFand can be important to their long-term wellbeing, social inclusion and safety. This is regardless of whether or not the sibling directly provides caregiving. This pillar focuses on building and enhancing the relationship between a sibling and their brother or sister with disability. When setting goals for strengthening a sibling relationship, it’s important to take into account the individual needs of all family members. Including siblings in any approach taken can help the sibling better understand and support their brother or sister with disability, as well as help nurture and strengthen the relationship between them both. This pillar also acknowledges people as being a sibling first, before they are given the label of ‘carer’. Often, in both policy and practice, siblings are framed as being carers. However, adult siblings, and people with disability have suggested that they prefer to be seen as siblings first^REF, and not all siblings will provide caregiving. Siblings and the child/adult with disability can benefit if there is more focus on their relationship than on caregiving. More information about the challenges of caregiving can be found on challenges for siblings^REF under the responsibility section.

4. Community connection and support.

Community connections are important for siblings, which in turn, benefits the whole family Caring is often done by the family unit, and it’s common for some of this caring to be done by siblings. It’s uncommon for caring to be shared across family and community networks or kinship, especially in times of stress. Siblings in families with disability often feel excluded from their community and extended family networks^REF. For example, siblings can have difficulty getting involved in school or community activities because the cost of these activities puts pressure on family finances. Or parents might not have time to take siblings to activities, or have other children come to play, because they are caring for their child with disability. This pillar encourages services to explore how a whole family might be able to better engage with extended family and friendship circles and the wider community in order to support siblings. It might include working with families to understand who is in their circle of supports. Examples of ways siblings can be supported include arranging a support worker to care for a child with disability when the whole family takes part in a community activity so the sibling is not taking on a caring role. Or organising car-pooling through school networks to help a sibling get to after school activities. Inclusive approaches like these support siblings to participate in their family and community as other children would. Siblings, if supported, can in turn bring unique perspectives and contributions to creating more inclusive communities for their brother or sister and their family.