Photo: RNZ / Jimmy Ellingham
Children with disabilities who do not have access to regular services can go backwards in their development, an occupational therapist says.
Changes to disability support funding this year mean that is a real risk for some families, although one Palmerston North charity is doing its best to intervene.
It runs the Little Stars centre, which has just moved into a bigger location.
Little Stars lead occupational therapist Heather Last said she had seen firsthand the effect of funding changes introduced this year.
New centre for kids with disabilities opens in Palmy North
"We've got children that have had regular attendance, and then it's been stopped because of funding. Then I've seen them again, and one little boy who was able to engage in art now can't, because he's lost the hand skills," she told First Up.
"He hasn't maintained those hand skills that he was just beginning to get, and he was really enjoying holding on to a paintbrush and being able to do something with it.
"I saw him recently and he couldn't hold that paintbrush anymore."
Families who receive an annual budget from Whaikaha, the Ministry of Disabled People, for the care of their children can no longer use that money on the likes of private sector speech or movement therapy.
That is because the ministry says it is available for free in the public system - but those RNZ have spoken to say it is not the same.
Instead of regular, hands-on sessions, they might get a few face-to-face minutes a month, which Heather Last said was not enough.
"This is the thing with children with motor challenges. Developmentally, they don't stand still. They're either learning and making progress, if they don't get the input that helps do the activities they want to do, then they will often regress or lose skills," she says.
Last joined Little Stars when the charitable centre opened about a year ago.
It had since outgrown its original space so had moved somewhere bigger, as it got more children and families on its books.
"In this facility, we have a specific art and craft room. And so we've got all of the art materials, all of the adapted materials, and it's all in one room," Last said.
"The children go and that's their art room, and it's fun. We have a specifics area for under 5-year-olds with all the different types of play activities. Again, early drawing, early art."
The facility also had a music and mobility room, which would soon host a piano.
The Little Stars centre brought services, such as movement and speech activities, and families together, founder Pip Cook said.
It was funded through donations and grants - and Cook said its new location was rent-free.
"So we've got between 25 and 30 families. We're pretty busy. Most of those families come in to us at least twice a week, some up to three times a week.
"Obviously, we could probably have double that if we had the finances to carry on taking more families in," she said.
Julia Tiffen tries out one of the cars donated by Kiwi Kids. Photo: RNZ / Jimmy Ellingham
Those families were feeling the effects of funding pressures.
"It's affected every family that comes in to us. It's been a a real minefield to try and navigate through for the families. We've just had to navigate the new environments as best as we can and support the families wherever as best as we can.
"But it has made our job incredibly difficult. It's also made it really distressing for families."
Cook said she knew what intensive therapy could do for children.
Her son Ryan did not get it and now needed round-the-clock care as he entered adulthood, but her granddaughter Julia Tiffen did, and she was now crawling, speaking and learning to walk.
"At the moment they won't fund occupational therapy, physiotherapy and speech therapy, which is obviously what a lot of our kids need to access because, you haven't got the basic foundations for kids that can't hold a pencil or hold a spoon for cooking, or really basic stuff.
"Then it makes it incredibly isolating."
Tiffen was at Little Stars as the Kiwi Kids charity delivered two special mini cars there that were both fun to ride around in, and taught children co-ordination and motor skills.
Kiwi Kids chief executive Dana Cocks drove from Auckland to drop them off.
"We've got a couple of what we call 'go baby go' cars. That's a programme that we offer that has mobility vehicles for kids generally up to the age of about six, and it helps them interact with their siblings and friends, and be able to actually keep up on bikes.
"So these guys are little motorised vehicles and can engage in a bit of fun," she said.
"Depending on the ability of the child, they can either use a button on the steering wheel with their hands, or they've got a foot button as well.
"We custom fit them afterwards with a few little handles to make them be able to hold onto the steering wheel a bit better.
"Or if they're a little bit of a lead-foot, mum and dad or a caregiver has got a remote control and they can override it any time to make sure they're not burning off."
It was all part of the work being done to get children with disabilities - like three-year-old Julia Tiffen - to move freely, mum Nikita said.
"She's had consistent therapy since about nine months old, and that's why she has a lot more movement than what she started with. That's why she has all her movement," she said.
"We've seen Heather twice a week, plus some, since about nine months old. Yeah, she's almost walking, and she's been crawling for a year-and-a-half now. She's really come a long way."
A ministry spokesperson acknowledged how challenging the year had been for some disabled people, their whānau and carers.
They said that like all agencies, Whaikaha had to manage spending within its allocated budget, and it wanted to ensure funding was available for those with the highest needs.
Changes to its purchasing rules did not reduce funding, but made clear what it could be used for, the spokesperson said.