Caring for these kids a job for life
"Careful," Cliff Robinson tells his son and daughter as the three wait to cross the road outside the Court of Appeal in Wellington.
As the green man blinks, Robinson grasps Johnny and Marita's hands tightly before they step out.
Safely seated at a cafe up the road, he supervises as they eat pizza, wiping sauce from their faces and patiently responding when they break into the conversation.
It's not an uncommon scene – an attentive father taking his two children out for lunch – except that Robinson is 75, and Marita and Johnny are 45 and 42.
Both are intellectually disabled. Johnny also has schizophrenia, diabetes and is on medication to suppress his sexual urges.
Since 1975, Robinson has been their caregiver – and he wants the Government to provide a bit of financial help in recognition of that role.
At 75, most "Kiwi jokers" would be enjoying their retirement, he says. Instead, he follows nearly the same routine he has for 36 years.
At 5.45am, he wakes, dresses and has a quick breakfast of tea and porridge. As soon as Johnny wakes about 6.20am, Mr Robinson checks his son's blood sugar levels and gives him an insulin injection.
While Johnny eats his breakfast, Marita wakes.
Marita can dress and wash herself with a bit of supervision, but Johnny is much more hands-on.
"I've got to do everything. Toileting can be frightening – poos all over the floor and so on – but he can't help it."
About 7.15am Robinson gets the pair to watch television while he makes their lunches, before driving them to the IHC centre 17 kilometres away in Thames.
Back at home he makes the beds, "and there's always a bit of washing because Johnny has a bit of trouble in personal areas".
If it's a good day and there's not too much housework to do, he'll fish for snapper. It's not recreational – the catch provides most of their evening meals. Early afternoon is devoted to housework and errands before he picks up Marita and Johnny at 3.30. After dinner, he gives Johnny another insulin injection, and then watches television with his children or reads to them.
Marita heads to bed about 8.30 or 9pm. If Johnny's in a good space, he'll go to bed quite early. "If he's in a bad space, he'll be up all night."
The routine goes completely out the window if Johnny's having a bad day. "Johnny's schizophrenic behaviour – that's the one thing that really wears me out. Violence erupts and I have to be very aware of where I place myself and be able to escape."
With his superannuation and the children's disability allowances, the family has about $800 a week for everything.
"I've still got a mortgage, I do 400km a week to IHC and back. With Johnny, food is a big item, and they're both very hard on their clothes."
The work is exhausting, but Mr Robinson does it for one simple reason. "I love them."
OPT-IN FOR PAID FAMILY CARERS 'IMPOSSIBLE TO PREDICT'
The Health Ministry would face "significant" costs if it were to change its policy and start paying families for the time they spend caring for their disabled relatives at home.
However, it has no idea how many people might take up the offer if the policy were to change, or how much it might cost.
The ministry is in the Court of Appeal this week defending its policy, which both the Human Rights Review Tribunal and the High Court have said discriminates on the basis of family status.
The ministry has appealed against the decision as the latest step of a legal challenge that Green Party MP Catherine Delahunty says has already cost the ministry $1.1 million and would have been better spent supporting the caregivers.
Five judges at the Court of Appeal were told yesterday that it had been estimated it could cost between $17m and more than $500m if families were paid for the time they spent looking after their disabled relatives.
Deputy Solicitor-General Cheryl Gwyn, representing the ministry, said the cost increase would be "significant" and would prompt a review of how the Government provided support services for the disabled.
However, it was impossible to predict how many people would opt to look after their relatives themselves if they could be paid to do it.
One of the judges, Justice Susan Glazebrook, questioned how the ministry could say changing the policy would be "fiscally unsustainable" if the cost was not known, but Ms Gwyn said the cost was only one element.
The policy was based on "natural support" coming from unpaid family and on the ministry meeting the cost of the gaps in the care family members were willing and able to provide.
The ministry provides services to about 30,000 disabled people.
The families in the case now before the court have received welfare benefits, such as the domestic purposes benefit, while caring for disabled adult children, with the ministry funding outside help if it was needed.
Four of the disabled adults were at the court in Wellington and another watched via a video link from Auckland.
The case does not affect those disabled through injury, who are covered by ACC.
The Dominion Post