Building Capacity and Potential through Connection – sharing understandings, experiences and journeys of disability, and building capacity and potential through connection 2018-2019

This pilot project was funded by Multicultural Affairs Queensland (MAQ). It commenced in December 2018 and was completed in September 2019. The project aimed to explore ways to build capacity and improve the lives of vulnerable people with disability from refugee and migrant backgrounds by connecting them with knowledgeable and caring community members whose understanding of disability has been informed by through their own lived experience.

Lalita Lakshmi co-ordinated the project and three bicultural workers Thao Pham, Venantie Niragira and Say Say Eh Lar were employed on a casual basis to assist with: identifying and liaising with suitable families, arranging meetings with volunteer individuals and families, helping to brief volunteers and attending meetings. Queenslanders with Disability Network (QDN), the Community Resource Unit (CRU) and Mamre Assoc. provided assistance to identify suitable volunteer families and other advice and support.

Nine families were introduced to volunteer families and individuals and supported to have discussions that allowed them the opportunity to find commonalities in their lived experience of disability. These conversations and sharing of information between families took place in their homes, local parks, during visits to local surroundings and by attending groups, such as disability support groups together. Information shared included personal stories, understandings of specific disability types, effective therapies and interventions, local disability organisations, the NDIS, and sharing of internet resources such as government and disability specific websites, and translated materials and videos.

The refugee and migrant families and individuals were from diverse cultural backgrounds including Sudanese, Burundian, Karen, Congolese, Somali, Ethiopian, Lebanese, Vietnamese, Aboriginal and Anglo-Australian.

The impacts of the project for individuals and their families varied for each but some examples include:

• Learning more about disability, and having a chance to share experiences
• Understanding more about the NDIS and how it works
• Providing opportunities to visit places of interest within their local community and surroundings
• Gaining a better understanding of different types of education for children with disability
• One family who had no access to their NDIS funds, now has increased funds that includes support co-ordination and has now been linked to a local disability support organisation that will be able to provide them with ongoing links to local supports.
• One mother with a child with disability met three other mothers and their children who all have the same disability. This gathering was suggested by, and arranged by her volunteer family. Prior to this meeting, the mother had never met another mother or child with this disability outside of a hospital setting. This mother said she learnt many things:

“I learnt and understood more about the rights of children with disability. I understood that it is not only my family and I who are having this experience. I learnt and understood that I have the right to understand services offered to my child and even ask for changes if I find them not useful.”

As a result, this mother said:

“I will prepare to put my child with disability in a normal school rather than a special school. I will do my best to avoid/stop isolating myself. I learnt and understood the best way is to present my child to other people in my community, I will do it.”

Feedback from individuals with disability and CALD families regarding this project was positive and included:

“Meeting this mother helped me so much to understand the NDIS. I was going to leave the NDIS but now I understand better and am so happy that you came to visit me.”
“You have given me hope. Before I thought my child would never be able to talk, but hearing how your child learnt to talk makes me think this may be possible for my son too.”

“This (project) should be done for all families with children with disability. It is important and helpful for such families to have people with same experience be close to them and meet them often.”

“Everything that I did not know Helen* explains to me. It is very useful for me to have this opportunity. She understands my problems and she comforts me when I am down.”

* Name has been changed.

Feedback from the volunteer individuals was also positive and included:

“It was a privilege for me to work with this CALD family. I can empathize with her and felt her frustrations. I hope with my personal experiences that I can give her some hopes for her son.”

“It helped me learn how important it is to know your rights and speak up. Be persistent and determined to advocate for your family member. If you are unsure, reach out to other families, community or other government agencies. Don’t take “NO” for an answer unless you have exhausted all avenues. For any emotional reasons that you can’t advocate for your family member, find someone who you trust to do that. It will lead on a more positive outcome.”

“This is a very good project to connect CALD families to whom they can reach out for help and learn from others. It gives the vulnerable families a sense of equality and some knowledge for them to support their family member.”

As the feedback highlights this project was valued by all participants and increased their knowledge and understanding across a broad range of areas. This is work that AMPARO would like to be able to do more of.

Unfortunately, the project also highlighted many of the hardships that families were experiencing in accessing adequate NDIA support. Many were not receiving the support they needed to implement their plan, many lacked any support coordination, and many had small and inadequate plans. These concerns have been highlighted with the NDIA and in a project report to MAQ and in some instances AMPARO was required to step in to provide the families with advocacy.

AMPARO Advocacy would like to sincerely thank MAQ for funding this important work and QDN, Mamre and CRU for their generous assistance with this project.