Caregivers worry about little support for special needs families

By Rose Cawley

Excitement bubbles over the faces of the children. The room is abuzz: balls bouncing, stereo blaring, one tiny head sporting a red clown wig – not to mention the secrets out on the destination of the mystery drive.
This school holiday programme seems like any other, but there is a difference. These children have special needs and are lucky to find themselves in a holiday programme.
While there is a plethora of holiday programmes for mainstream children, not many are geared towards caring for those with special needs, meaning many children miss out and parents do not get that much-needed respite.
Parents of these children have to be that bit more careful, that bit more observant – it is a consuming and exhausting demonstration of love, leaving them needing a break.
In Pakuranga there is Life Kidz, an organisation that revels in the chance to support these families.
Deearna Buxton, manager of Life Kidz, says every holiday they have to turn people away because they have reached maximum capacity.
Parents of special needs children are able to send them on school holiday programmes through allocated carer support days, which are funded by the government.
Buxton says not only are there not enough programmes available for these families, but the system of carer support days is flawed.
“Parents don’t get anywhere near enough carer support days, they can get 10 to 50 days out of a year, which is nothing in the spectrum of things,” she says.
The same scenario can be found at school holiday programme provider Masada. Founder Norma-Jean Van de Rheede says when parents have run out of their carer support days and can’t afford to pay for more, she will often take the children pro-bono.
“Special needs mums and dads need a medal... they battle for their child from birth, trying to get the best for them, but they need a break, so I do what I can.”
She says while the organisation and the families are dependent on the funding provided through carer support, it is not enough when you consider the level of care that goes into the children.
“You may want your child to take a weekend away with the organisation, so you take the $85.50 and you divide it by 12 hours and you are looking at what, three-four dollars an hour? Nobody provides care for that,” she says.
Jessica Simpson, a senior youth worker at Life Kidz, says the behavioural issues some children struggle with, and the extra care they require, can mean a mainstream programme is ill fitting.
“If they did go to a mainstream school holiday programme their needs may not be catered to. If there is nothing like this programme they have nowhere to go.
“It is not the children in the programmes caregivers worry about; those children will have fun on their mystery drive to MOTAT. It is the others who do not have access to such a programme – leaving those within the industry wondering what can be done.”