Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

The importance of sibling relationships transcends cultural and geographic boundaries, which warrants considerations of siblings by researchers and practitioners all around the world when they work with families of individuals with disabilities. While being a sibling of an individual with disabilities can be challenging at times, findings from past studies also confirm that siblings could have positive outcomes when adequately supported. Siblings can often be overlooked, which can lead to feelings of isolation. If this continues, children can become vulnerable to a range of emotional and mental health problems. If siblings are acknowledged and connected to sources of support, however, they are likely to become more resilient and family relationships are likely to be stronger.

This article presents profiles of three sibling support initiatives in three Asia-Pacific countries, namely, Australia, Japan, and Taiwan. Both Siblings Australia and Sibling Support Group in Japan have been around for over two decades, while the Sibling Information Network in Taiwan has just begun last year. All three groups were founded by and developed for siblings, and, in the case of both the Taiwan and Japan groups, received support from Don Meyer, founder of the Sibling Support Project. The first story provides the background of Siblings Australia, introducing organization history and future plans of a group that provides in-person and online sibling support for older and younger siblings. The second story focuses on Sibling Support Group in Japan, and further specifies support group guidelines proposed by adult siblings with Japanese roots. Finally, the third story describes a relatively new group providing informational support for Chinese-speaking siblings, Sibling Information Network in Taiwan.

Siblings Australia

Siblings Australia was established in 1999 and since then the organisation has developed a national and international reputation for its work with families and professionals. The focus is on siblings of children and adults with disabilities or chronic illness. The organisation’s mission statement says it all: Siblings: Acknowledged, Connected, Resilient.

Siblings Australia has developed resources, including an extensive website, a DVD for parents and providers, and the Sibworks peer support program. The organisation has also carried out research both on its own and in collaboration with other agencies. 

It has, for many years, run workshops for parents and professionals around Australia and overseas, including in the United Kingdom, Italy, the United States, and Canada. These have focused on strategies to support siblings over their lifetime, in order to strengthen both them and their relationship with their brother or sister with disability. 

The organization has developed Sibworks, a peer support program for siblings aged 8 to 12, with activity booklets for participants. There is also a program manual that offers organizational steps and timelines, as well as evaluation tools, parent materials, and ideas for working with children outside the Sibworks target age range. Siblings Australia has supported older siblings in a range of ways, including live group meetings; a closed Facebook group for adults, SibChat; and, more recently, Sibteen, a closed Facebook group for teen siblings, in collaboration with the Sibling Support Project in the United States.

Sadly, for the last 12 years, Siblings Australia has operated without funding, apart from a couple of small projects, thanks to the largely voluntary efforts of its people. Many of the above programs have been curtailed. Over this time the group has strongly advocated for siblings to be recognized, both in their own right but also as crucial contributors to the wellbeing of people with disability. And recently, it won funding from the Australian government for three years, which will allow for more staff and the building of a stronger organisation.

Sibling Support Group in Japan

Around the same time Siblings Australia was established, sibling support began to emerge in Japan. Sibling Support Group in Japan was established in March of 1998. The organization’s primary goal is supporting siblings who are struggling with negative or ambivalent feelings toward their brothers or sisters with disabilities. Unlike other groups in Japan, which allow parents, sibs-in-law, or researchers to attend meetings, this group is exclusively designed for adult siblings, following principles of successful self-help groups. The organization hosts ten meetings for adult siblings of people with disabilities or chronic illnesses per year. The meetings vary in size from three to 14 siblings, with an average of six sibling participants.

The group facilitators proposed guidelines for a sibling support group to include the following: 

1. Listening and supporting each other without criticizing or making judgments
2. Respecting each other
3. Sharing responsibility and contributing to the group
4. Meeting regularly
5. Helping each other
6. Knowing you are not alone

“I didn’t have any places to talk about my sibling with disabilities until I participated in this group,” one participant said. “When I tried to bring up what I thought about my sib at home, there was a huge gap between what I wanted to convey to my mom and her thoughts. Afterward, we would argue and I became sadder. This group is the only place where people empathize with my situation.”

Facilitators and participants should read self-help books, such as Helping You Helps Me: A Guide Book for Self-help Groups by Karen Hill, to enhance outcomes from the group, its leaders suggest. Also, facilitators should pay attention to different childhood experiences, different expectations of siblings’ role, and different sibling relationships when running a group meeting. In addition to the regular meetings, this group connects with sibling leaders internationally and invites speakers such as Don Meyer to Japan, supported through donations and publishing booklets about sibling supports. 

Sibling Information Network in Taiwan

Siblings all over the world are bound together by shared experiences and find support through connecting with each other. The Sibling Information Network in Taiwan was created as a result of this type of networking among sibling leaders from the United States and Japan following a Sibling Leadership Network research committee experience. Organizers noticed that there were more and more parent organizations running small-scale sibling support groups as Taiwan has been transitioning into a super-aged society, but these programs can be difficult to access for families not affiliated with any parent organization. With assistance from non-profit organizations and funding from the government grant, the first sibling conference in Taiwan was held in 2019. With assistance from siblings who work in disability-related fields, the Network subsequently launched a website dedicated to sibling-related issues to address the need for informational support for families and practitioners.

The website aims to increase awareness on the significance of sibling support in Chinese-speaking regions through knowledge translation. The editorial team summarizes sibling related research studies in plain language, composes/collects sibling stories, and translates articles published in English/Japanese. The website includes posts to advertise programs or workshop for siblings, notes from webinar or conference sessions, and links to sibling websites from other countries. The website currently serves as a hub for sibling support outreach, and may expand to an online support group in the future.

Conclusion

The programs highlight different forms of sibling supports: instrumental, emotional, and informational. When siblings have a chance to connect with each other, they know they are not alone and they feel their voices are being heard. Over time, these connections will continue to grow as sibling support organizations around the world gain members and support.