Warilla single dad Ray Spurr has sometimes struggled to get the special needs of his child met, but an innovative pilot program is ensuring his voice is heard.
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The father-of-four was among 18 parents or carers of children with a disability to take part in The Parent Room, a program run by the University of Wollongong.
The aim is to provide parents with the skills and support needed to advocate for their children, particularly as they prepare for the roll-out of the National Disability Insurance Scheme (NDIS).
For Mr Spurr there’s been more immediate results, with the knowledge he’s gained empowering him to negotiate additional support for his son at school.
‘’My youngest son is autistic – he’s a happy kid who lives in his own little world, loves rugby and loves going to school,’’ he said.
‘’However I have struggled in the past to get him the support he needs at school, which has made it difficult for me to find full-time work.
‘’However through the program I’ve not only learned how to make myself heard, I’ve found out more about what support is available and have worked with the school to get that for my son.
‘’Now he’s better cared for, and I’m able to start looking for a full-time job.’’
Dr Amy Conley Wright, from UOWs Early Start Research Institute, has led the program in collaboration with not-for-profit organisations CareSouth and Noah’s Shoalhaven.
Dr Wright said it was vital parents knew how to advocate for their children under the NDIS, which shifts funding from service providers to the person with a disability, or their parent/ carer. The scheme will be rolled out in the region from July 2017.
‘’The NDIS changes the expectations and the role of parents and carers,’’ she said.
‘’There’s much more of a need for them to develop a vision of what they want for their child, and make important decisions around how they use the funding.
‘’They will increasingly need to write letters, and attend meetings where they will need to speak up for their child.
‘’So we’re aiming to give them the skills, the information about their rights and responsibilities, and the confidence to do that.’’
The program, funded by the NSW Department of Family and Community Services, also lets parents meet others in a similar situation.
‘’Parents and carers were able to share their experiences and they were a great source of information and support for each other,’’ Dr Wright said.
Mr Spurr added: ‘’The other parents made me feel welcome and they understood what I was going through – no more do I feel alone.’’
CareSouth and Noah’s Shoalhaven will continue with the program, while UOW is completing a training manual so other community organisations and playgroups can run it too.