Samuel Baylis goes to Little Stars twice a week, including for hands-on sessions with Heather Last. Photo: RNZ / Jimmy Ellingham
Parents of children with disabilities are concerned changes to funding rules will halt their children's development.
The Ministry of Disabled People, Whaikaha, no longer allows parents who are given annual budgets for their children's needs to spend the money on privately provided services, such as therapy, when similar ones are publicly funded.
But parents spoken to by Checkpoint dispute that what is on offer publicly is comparable with the hands-on help they access privately using those budgets.
One such child is 9-year-old Samuel Baylis, who has difficulty with his balance, speech and everyday activities such as eating.
He can crawl, but he cannot walk or stand by himself.
He attends his Palmerston North primary school, Whakarongo, in a wheelchair, and twice a week his mum, Jenny Baylis, takes him to private physical and occupational therapy at the Little Stars centre in the city.
Samuel has been diagnosed with multiple mitocondrial dysfunction syndrome, type six.
Through Whaikaha his mother is given an annual budget to spend on getting him the help he needs.
But, when that allocation rolls over in August she's worried that, under changes announced in March, it can't be spent at Little Stars or other such private providers because Whaikaha says the Education Ministry provides something similar at school.
Samuel's mother, Jenny Baylis, is worried she'll no longer be able to spend their budget for Samuel's care at Little Stars. Photo: RNZ / Jimmy Ellingham
Baylis said the school's offering was not anywhere near what Samuel received at Little Stars.
"They have a physical therapist and occupational therapist that visit the school and will visit Samuel at school, but they provide advice and equipment, and the advice is around how to adapt the curriculum for Samuel while he's at school.
"Little Stars is totally different to the service the Ministry of Education offer."
At Little Stars Samuel and other children receive hands-on therapy integrating their needs, rather than having a series of appointments with specialist physical, language or other therapists, with no link between them.
Baylis said she was worried Samuel's progress would stall if he no longer received that.
"He's not going to be given every opportunity he should be given to succeed in daily life tasks, which able-bodied people take for granted."
Elijah, who is 18 months old, also attends the Little Stars centre.
He gets no Whaikaha funding for private therapy there. His mother, Crystal Ling, said she had been told Health New Zealand provided something similar, and he did not yet have a definite diagnosis.
He has decreased muscle tone, and floppy airways, and started seeing paediatric occupational therapist Heather Last at Little Stars - for free - in January.
"I can see his improvement," Ling said.
"When he first came here he couldn't even sit properly. He was wobbly, but now he can sit still. I can leave him and I can go to the bathroom quickly and come back, but prior to that I had to be with him 24/ 7."
Elijah's mother Crystal Ling says she gets a visit from a publicly funded therapist just once a month. Photo: RNZ / Jimmy Ellingham
The Health NZ service simply involved quick visits to their home, Ling said. "They only come to see him once a month for half an hour."
She said it was only time for them to show books or pamphlets, and give information about groups to join - a long way from his regular hands-on sessions with Last.
Ling has to look after Elijah so she cannot work, meaning her husband's income is the only money coming in at home. It can't cover the costs of hands-on therapy.
Last, the Little Stars clinical manager, said working closely with children with disabilities when they were young was key to allowing them to develop.
"It's great if you can do that at an age-appropriate time because that's when the brain's primed up to learn it and it's much harder to turn it around when the children are older. Maybe they've got very stiff. If they're floppy they get more floppy. It's hard to teach at a later age."
For Elijah, "intensive input is important to teach him all the things that other children of his age would just acquire naturally".
Last said just four months ago Elijah was terrified to move, however, he had shown improvement thanks to early-intervention therapy.
Samuel Baylis was working on skills to support himself, such as feeding, Last said.
Pip Cook is the chairperson of the charity board behind Little Stars.
She said two families already had to stop using its therapists because of the funding changes, leaving her worried about the pressures they now faced.
"We are trying to support families through a world of disability, which is incredibly stressful for families," she said.
"Two out of three marriages don't survive having children with disabilities. It causes a lot of poverty in families. Often parents can't work because there's no after-school care, no holiday programmes."
Little Stars was working with more than 25 families, and was soon moving to a new premises rent free.
Policy changes 'difficult' - Whaikaha
A statement from Whaikaha said it acknowledged how difficult the situation was for families and carers wanting to access support through Little Stars.
"Some difficult policy changes have been required on the use of ministry-funded personal budgets to manage the overall costs within the disability system."
The statement said Whaikaha funded services similar to those paid for by some families from their ministry budgets.
"A decision has been made that ministry-funded personal budgets cannot be used to purchase services that are already funded and available free of charge across New Zealand.
"The ministry must take a balanced and fair approach to what we fund so that spending on disability supports remains within budget."
