A young representative of a largely ‘invisible’ group of children made his presence felt at a children’s rights seminar in Wellington today.
James Voykovich, 6, from Auckland, presented a representative of the Children’s Commissioner, Dr Janis Carroll-Lind, with a copy of ‘Start Strong’, a draft Plan of Action designed to make life better for him and other disabled children.
“A total of 90,000 – 10 percent – children in New Zealand have disabilities – but they still seem to be largely invisible to policy makers,” says IHC Director of Advocacy Trish Grant.
“Of these children, 25 percent of them live in benefit-dependent households; and 523 children with a disability are under the care of Child Youth and Family.”
Trish says the statement last week by Education Minister Anne Tolley that the new task force on special education will reach the children who need it most was very welcome.
Trish says children with disabilities experience high rates of poverty and family breakdown, and these families are missing out on the health services and support that are automatically available to other children. “Parents don’t get the right information; they don’t know what their entitlements are. They are referred to a huge number of practitioners and specialists – many of whom are working in isolation from each other.
“As a result, families are put under increased pressure, they aren’t connecting with other families in their communities and their children are denied the effective early support that they need,” Trish says.
The Start Strong seminar is the third in a series – two in Wellington and one in Auckland –this year organised by IHC to focus on these issues and find a way to tackle them. Today, representatives from the Health, Education and Social Development ministries and non-government agencies came together with parents, disability and parents’ organisations for the launch of the draft Plan of Action.
Trish says IHC and the Parent and Family Resource Centre have worked with families, disability organisations and the Paediatric Society to identify the gaps, issues and concerns and draw up an action plan focused initially on children up to the age of eight.
“We have got a rich stock-take of information and we want to secure a commitment to work together over the next year to add the detail,” she says.
James Voykovich, 6, lives in Howick and he has Down syndrome. His family have to fight every step of the way to make sure he is treated fairly.
As a baby he had a bladder infection that turned to septicaemia and his mother, Francesca, says staff had been too quick to put his sickness down to his disability and sent him home from hospital. Then his kindergarten was not prepared to have him there without teacher-aide support. Francesca had to take him away, crying, from his friends. When it was time for school, the story was the same.
She says she sometimes feels overwhelmed. “There are days when I want to put my head under the pillow and forget all about it.”
She says children like James have the law on their side and apparent protection for their human rights. “It’s great on paper, but it’s not happening. Who is accountable for that?”
Caption: James Voykovich, 6, from Auckland, is set to release balloons representing the 90,000 disabled children who live in New Zealand. James today presented a representative of the Children’s Commissioner, Dr Janis Carroll-Lind, with a copy of ‘Start Strong’, a draft Plan of Action designed to make life better for him and other disabled children.