Pillars – Complete Document

The SibAware™ pillars are designed to be embedded in policy and practice. They are aligned with best practice approaches to working with families and intend to strengthen the focus on siblings and promote the review and reformation of current models of working to expand conversations, approaches and inclusion of siblings.

1. Whole Family Approach.

All family members are recognised and supported.

The family is one of the most influential systems in a child’s life. It is essential then, that we develop an ecosystem that is designed upon a whole-of-family approach, that is centred around family capacity building and family goals.

It is widely accepted that family-centred practice is evidenced as a best practice principle across disability and family-focused services. Working from a family-centred approach ensures there is a partnership between families and professionals in which knowledge and information is shared equally. Family-centred practice considers family strengths, specificities of family life and family priorities to shape interventions and services.

True family-centred, strengths-based practice recognises all the people who make up the whole family. This also recognises the critical role of all family members as change agents in children’s lives, and their ability to shape outcomes. Ultimately, there is a recognition that the quality of life for a family and how they function together can sometimes be as important as any therapy provided.

However, whilst many services affirm that they are family centred, in actual practice this can often involve thinking only of primary caregivers and their relationship with the child with disability. Family-centred practice can be further eroded by changes to funding approaches.

Furthermore, funding models have inadvertently reshaped services from an inclusive practice context, either in the family’s home or with family/caregivers in a community setting to often being delivered without family present, such as in clinics or education settings.

In addition, enshrined in the standards associated with accreditation for disability services in Australia, person-centred practice is promoted and embedded in practice. Family-centred practice and person-centred practice are two frameworks that can and should work together to achieve outcomes. Whilst the imperative of person-centred practice is to centre the person with disability, supporting siblings in a way that honours their relationships with the person with disability is compatible with this approach.

In early childhood in particular, goals are often child-centric in nature with specific focus on areas such as communication, social interaction and learning. They often focus on assisting a child to form relationships and connections in the community, whilst family connections can be overlooked. There needs to be a stronger focus on including family goals to ensure relationships across the family are considered too.

There are many ways that professionals can embed sibling support in their practice despite funding and other limitations. This needs to be supported at an organisational level.

2 Prevention and Early Intervention.

Siblings are provided with support early to enable better outcomes for the whole family.

The support that families can access in the early stages after diagnosis of disability has a large bearing on how the whole family functions in the short and long term. Siblings are not immune to the stress involved. Support can lead to benefits not only for siblings but for the whole family and the community.

Services need to take a preventative approach to identifying mental health risk and protective factors in children.

This might include assisting parents to support siblings, peer support from other siblings of children and/or adults with disability, capacity building supports to strengthen siblings’ understanding and confidence in managing not only the way they interact with a brother or sister but also how to manage others’ reactions.

3. Sibling Relationship First.

Sibling relationships are crucial, regardless of caregiving.

It is crucial that siblings are recognised as an important part of the lifelong social support system for a person with disability regardless of whether they are playing a direct caregiving role or not.

There is still a considerable lack of awareness and understanding about the importance of strong sibling relationships for both siblings and the child/adult with disability. Sibling relationships are usually the longest of any relationship and are complex and ever-changing. From an early age, siblings are part of the first social network for a child with disability and often play a key role in assisting the development of their brother or sister with disabilityREF. Siblings might also wear the hats of mentors, prompters, teachers and playmates. Siblings are crucial to the long-term wellbeing, social inclusion and safety of people with disability. Like all sibling dynamics, the relationship can be both a positive and lifelong connection, perhaps challenging and painful, or all of these experiences mixed together.

Goals will depend on the individual needs of the child and the family. A suitable goal for a child (and/or adult) with disability might be to focus on strengthening the relationships with siblings. Another might be around learning to interact and communicate with siblings to develop skills that strengthen relationships within the family. For example, if a child with disability has challenging behaviours, there are relevant therapists who engage with the child to support their social development and increase their engagement in the community.

Such approaches should include siblings, to help them understand the behaviour of the child with disability, or to nurture and strengthen the relationship between them. For, example, a support worker may be able to encourage and support activities that foster siblings playing together. All of these will not only strengthen the relationship but also improve the sibling’s capacity to support their brother or sister. These skills may then be transferable to build on relationships with other people within the community.

This pillar of practice also promotes sibling first language which acknowledges people as a sibling first before the assumption or labelling as a ‘carer’. Often, in both policy and practice, sibling support is framed as young carer or carer support. However, there can be benefits for both siblings and the child/adult with disability if there is more focus on the relationship than caregiving.

If siblings continue to be included under the ‘young carer/carer’ policy umbrella, we may miss the support needs of many siblings, who are not providing caregiving but nevertheless would both benefit from building on the relationship with their sibling and/or may have other challenges that create stress. If siblings do provide caregiving, and this is kept in balance, it can be an enriching experience for them.

Many siblings already have a heightened sense of responsibility, way beyond what is appropriate for them, and the term ‘young carer’ can add to their anxiety about the role they might be expected to play, even from a young age. It can also add to the difficulty in developing an identity that is not focused on being a ‘helper’ and putting the needs of others first.

In addition, over the long term, such terminology does not add to the dignity of children and young people with disability, for example a 12-year-old boy would most likely feel uncomfortable with his 10-year-old sister being known as his ‘carer’. Adult siblings, and people with disability have suggested that they prefer to be seen as siblings firstREF. Again, it is important to focus on the relationship between the siblings and not assign specific roles that might hinder that natural relationship.

4. Community Connection.

Community connections are important for the whole family

Families have shared common experiences of feeling excluded from their local community, as well as extended family and informal networksREF.

Rather than caring being shared across family and community networks or kinship, especially in times of added stress, in most families it is centralised on the family unit, and it is a common experience for this to fall in part onto the shoulders of siblings. Alongside the child with disability, siblings can have difficulty engaging in school or community activities. Cost may be a factor given added demands on family finances. Parents may not be able to take siblings to activities, or have other children come to play.

This pillar encourages services to look beyond the roles and responsibilities of parents and/or caregivers, to explore how the whole family might more readily engage in extended family and friendship circles but also the wider community. It might include working with families to understand who is in their circle of supports, who else can assume care responsibilities for their children or who can provide emotional or physical support to the family. These conversations are designed to expand the relationships and connections beyond the nuclear family unit to the broader kinship and community network.

Approaches might include more formal mechanisms to reduce the pressure on all family members, for example, supporting a family to set up their own ‘circle of support’, or engaging a support worker to accompany the family in community activities. Informal approaches might include a school, say, assisting a child to attend sport or other school activities through car-pooling. Services need to work within all the settings in which a child operates – family (immediate and extended), friends, peers, school and community.

Inclusive practice centres the child’s right to participate in their family and community as other children would. As services have started to evolve toward a social model of disability, more of the focus of services is on the everyday environments of children, where they learn best and where they have the strongest relationships.

The driver for meaningful participation and inclusion rests on the attitudes, beliefs and actions of communities. Siblings, if supported, can bring unique perspectives and are often able to contribute to discussions around creating more inclusive communities for their brother or sister and their family.

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