The SCIA Advocacy Advisory Group is a subcommittee to the SCIA Members Issues Sub- Committee.

The Advocacy Advisory Group are people with lived experience that voluntarily provide advice on advocacy priority areas for SCIA and run our local Advocacy Community Networks.

Meetings are held monthly. Current lived experience representatives include:

Alison Cook (Illawarra Shoalhaven representative): Alison has lived with her disability since 1999. In all the areas that Ali worked in and by sharing her own experience of disability, Ali was focused on promoting the importance of welcoming and inclusive physical access, and creating safer, trauma informed spaces, and promoting non-clinical design and practice wherever possible. Ali is a consumer advisor in her local hospital group committee, and she is a member of the of the University of Sydney Health Consumer advisory group. Ali has participated in co-designing models of care and practice guidelines for NSW Health projects. Ali is passionate about advocacy and would like to be more involved in the advocacy work that SCIA is doing.

David Ham (Murrumbidgee Representative): David is a farmer who lives in rural NSW. As an Advocacy Advisory Group member David wants to help others with SCI and other neurological conditions to navigate the system for their best care and support. David is keen on starting an Activated Community Network group in his local area to provide support and a community for people with SCI and other neurological conditions. David is an active member on the SCIA Board. David has had experience negotiating his support needs with the NDIS and has successfully managed two appeals to get what he needed. David has great contacts with his local council and is happy to talk to local members about issues that affect him and other people in his community.

David Larbalestier (Mid North Coast Representative): David acquired this SCI after the age of 65 years. David had to move into a nursing home even though he did not want to. Over a short period, David had to move nursing homes a number of three times. and the last nursing home David moved to resulted in David having to move away from his family. David finds it very difficult to live in a nursing home and has in the past been placed with people with dementia because of his high physical support needs, even though he does not have dementia. David wants to fight for older Australians with SCI to receive NDIS equivalent funding so he and others in his situation can move back home or into suitable accommodation in their local communities. David also wants better training for nursing home staff around complex disability like SCI. David wants older people with disability to have their rights met and he strongly feels that people like him need to be heard. He wants to give people with disability the opportunity to say what they need and be able to use their voice to make the change required to live their best lives.

Jayne Broadman (Western Sydney Representative): Jayne is passionate about advocacy due to her 25-year career in Local Government Human Services. In her roles Jayne was involved in strategic planning, community development and direct service provision for people with disability and the frail aged. Further, Jayne’s experience and in her work roles, Jayne has always advocated for the rights of vulnerable people and people with disability. With her own lived experience of disability, Jayne understands the needs of people with complex challenges. Now that she is retired, Jayne is looking for meaningful volunteer activities to which she is able to contribute her skills and experience. With her qualifications and skills, lived experience and understanding of how important policy development is, Jayne will be able to make a great contribution to the Advocacy Advisory Group. Jayne understands that input from a range of people improves the development of policy and advocacy and can have positive long-term change for communities.

John Green (Hunter / P-CEP Representative): John is already involved with SCIA in a voluntary capacity. John has been presenting with the Policy and Advocacy team’s Person- Centered Emergency Preparedness (P-CEP) workshops. John is a great asset, who is appreciated by participants for being able to bring his lived experience to the P-CEP workshops. Since the NDIS John’s life changed greatly, he is now able to remain living at home and can access the community whenever he wants to and can do the things he loves. John is very aware of the lack of community awareness about SCI. John is an active member in his local community. John attends his local council Emergency and Recovery Committee. For 11 years John was on a national advisory committee for Life Without Barriers (LWB), his role was to represent people with disability in NSW and to give them a voice in how the organisation needed to work for them. John also worked on a working group that helped develop LWB client’s rights policy and procedures. John also attends Toastmasters in his local area and wants to utilize these skills in this role. John wants to continue to learn new skills and to contribute to his local community.

Raja Relf (Eastern Sydney Representative): Raja has lived with her SCI since 1985. She lives with her husband, Mark, who also has a physical disability. Raja worked for SCIA for 13 years and now runs an Access Consultancy practice with her husband. Raja represented Physical Disability Australia at the United Nations Convention on the Rights of People with Disability as an observer in Geneva in 2013. She was engaged for 18 months as a participant with the NDIA on a number of co-design projects around the review of the NDIS. Raja lives part time in regional NSW on the Mid North Coast and has firsthand experience of the unique challenges for people with disability living in non-urban areas. Raja has a passion for advocacy and total inclusion for all, particularly women, people in regional areas and people from diverse backgrounds.

Sarah- Jane Staszak (Nepean Blue Mountains Representative): Sarah- Jane has been living with SCI since 2014. Sarah- Jane is currently working as a Peer Support worker for SCIA but wanted to further contribute to the agency in voluntary capacity. She has joined her local council’s Access Advisory Committee and is often asked to consult on projects. She is a consultant for National Parks for accessibility upgrades around the Blue Mountains area. Sarah- Jane volunteers on Varuna Disability Services’ disability inclusion action plan advisory group. She became an ambassador for Assistance Dogs Australia where Sarah and her dog Cosi were the poster girls for the campaign. The campaign was very successful and raised $600,000 for the agency. Sarah- Jane has actively provided feedback on some of SCIA’s Policy and Advocacy Team’s initiatives and has shown an interest in the P-CEP work and has provided feedback on the workshops. She has been engaged with the trial of the SCIA’s online ePACT. Sarah- Jane wants to contribute to and support other people with adult acquired disability. She loves networking and the collaborative side of advocacy as it enhances her learning.

Sarah- Lynn Eade (Mid North Coast Representative): Sarah is a wife and a mother of two who sustained her injury in 2020. Sarah wanted to find more meaning and purpose in her life and be a voice for herself and other people with disability, so they can be heard. Sarah is also looking for something bigger to be part of where she can make the most impact. Being a mother living with SCI, Sarah feels that she could help other parents with SCI or advocate for parents with a child with SCI. Sarah worked in the disability sector for 17 years before sustaining her injury. Sarah is a problem solver and enjoys looking at things with different approaches to make things safer and better for all people living with a disability.

Tanya Fitch (New England Representative): Tanya has a deep passion for her community and for improving services and facilities for those living with disability, particularly those living in rural, regional and remote areas of NSW. Disability matters and related issues will be an ongoing factor in Tanya’s own life and being able to be involved in improving the life experiences and inclusiveness within society for herself and others who live with disability is something that Tanya a is very passionate about. Having lived in rural NSW, Tanya understands the disadvantages that people with SCI face in rural and remote NSW, particularly the lack of generic services, resources, employment opportunities and disability service provision. As a direct result of her own experience Tanya knows how important advocacy is, especially for those who feel they don’t have a voice, are being ignored, are not being listened to or not being heard. Tanya has provided mentoring and peer support to newly injured people with SCI in rural and remote areas. In 2018 to 2023 Tanya was the rural representative on the Spinal Cord Injury \ Wellness Project Steering Committee which developed the SCI Health Maintenance Tool. Tanya wants to bring her firsthand knowledge and share her own lived experience of the various issues associated with living in rural and regional areas of NSW