Organisations supporting families with children with vision impairment have formed a new Paediatric Vision Impairment Alliance focused on advocacy at the policy level, writes EMILY SHEPARD.
When two separate parents of children with vision impairment were introduced by an orthoptist, they immediately knew they were both on the same page. Despite their children having different conditions, the barriers they were facing were all too familiar.
Having both established support organisations to fill the gap they experienced in finding accurate information, support and knowledgeable professionals when their children were diagnosed, Dr Megan Prictor and myself, Ms Emily Shepard, have since joined with others to establish the Paediatric Vision Impairment (PVI) Alliance.
Megan is the founder and director of Cataract Kids Australia, designed to improve support for children with cataracts and their families, enhance clinical care and build connections with research across Australia. I’m the co-founder and director of UsherKids Australia, providing information, education and support for families of children diagnosed with Usher syndrome.
I can recall the initial discussion with Megan. We were essentially the same organisation, providing the same resources, with the same aims but just for a different condition. Our common goals were to provide families with accurate and timely, condition-specific information; to connect parents to gain support through lived experiences; and to create a network of knowledgeable healthcare professionals.
The challenges being articulated repeatedly by numerous condition-specific children’s vision organisations across the country, as well as by several orthoptists with extensive experience pursuing systemic improvements in the diagnosis and care of children with vision impairment, drove the formation of a new formal alliance.
The PVI Alliance has been created with the common goal of providing a united voice to the small but diverse group of organisations and individuals supporting Australian children with vision impairment and their families.
Its focus is at the advocacy and policy level rather than replicating individual support functions delivered by its member entities.
The PVI Alliance members are drawn from support groups across all forms of paediatric eye disease, as well as leaders in education, research and eyecare. The founding member organisations include
Cataract Kids Australia, UsherKids Australia, as well as:
• Batten Disease Support and Research Association Australia, dedicated to improving the lives and well-being of patients and families affected by the disease through family support, funding vital research, and advancing education and awareness of in Australia;
• CHARGE Syndrome Australasia, supporting families and individuals with this syndrome in Australia and New Zealand with the mission to make the person’s journey simpler and easier by connecting families with information, experts and other families;
• Children’s Tumour Foundation, providing hope for everyone impacted by Neurofibromatosis in Australia by advocating for change, advancing research and empowering this community with the knowledge, connections and support needed at every stage of their journey;
• CVI Community Australia, a community for parents, professionals, carers and others to share learning and ideas about Cerebral Vision Impairment (CVI) in Australia.
The founding individual members include people active in the paediatric vision impairment community: Dr Sandra Staffieri and Dr Susan Silveira, both research fellows and paediatric orthoptists, Dr Bronwen Scott, orientation and mobility specialist, Ms Lisa Kearns, research genetic counsellor and orthoptist, and Ms Natalia Kelly, specialist low vision orthoptist.
The PVI Alliance will fill existing and future gaps for families by responding to critical and contemporary issues directly relating to paediatric vision impairment concerns in health, education, advocacy and research. This includes:
1. Advocacy for children with vision loss in Australia, to influence policy that addresses identified unmet and emerging health and education needs.
2. The alliance will focus on sharing resources that educate parents, carers, community and clinical staff to ensure children with vision impairment live life to its full potential.
The PVI Alliance members also seek to work collaboratively with other like-minded persons and organisations.
What started as casual conversations has facilitated an alliance we hope will support member organisations to develop shared and shareable resources. More importantly, it will advocate strongly for systemic change that is needed in paediatric vision screening, diagnosis, treatment and wraparound support.
Collectively we are learning much from each other while recognising and building on our valuable common ground. It is already evident that the alliance can leverage existing connections and opportunities much more effectively, which ultimately benefits Australian children with vision impairment.
For more information, visit www.pviallianceaustralia.org or email pviallianceaustralia@yahoo.com.
ABOUT THE AUTHOR: Emily Shepard s a co-founder and Director of UsherKids Australia committed to making the lives of children with Usher syndrome and their families better by equipping parents with support and guidance when they need it most.
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