This therapy is helping Max walk. Its funding is about to be cut

Max Luehrssen-Ryan’s eyes light up when Winnie Choy starts his therapy session with a song on the guitar.

“He comes away the happiest from this therapy,” his mother, Gemma Ryan, says. “This is the one where I see his eyes open the most.”

If Max’s eyes aren’t open, Ryan explains, it is difficult to know if he’s listening at all. The three-year-old has epilepsy, autism, global development delay and a rare genetic growth disorder called Sotos syndrome.

Music therapy is essential for Max Luehrssen-Ryan’s development, but NDIS funding for his sessions will be cut dramatically. Credit: Wolter Peeters

Choy is teaching Ryan a song they can sing to engage Max while they go through his physiotherapist’s detailed steps to get him from sitting to standing. He has five hours of appointments with physiotherapists, occupational therapists and speech pathologists, but without these weekly music therapy sessions, Ryan said they would be almost impossible.

“I think people think of music therapy as a nice little add-on but actually, for us, it’s the thing that glues all of [the other therapies] to Max,” Ryan said.

“We can try and get him to practise things all he wants, but if he’s not engaged here in the room … he can’t learn anything.”

Ryan and Choy’s worlds were upended this week when news filtered through the industry that the NDIS was making major changes to the way music and art therapies would be funded.

Several providers in discussions with the National Disability Insurance Agency had been left with the impression that all funding for music, art and creative therapies would end from December as the agency pushed through new operational guidelines about which therapies could be accessed under the $42 billion scheme. Providers told panicked parents their services would no longer be available from as early as next week.

Outgoing NDIS Minister Bill Shorten was forced to clarify the changes on Tuesday. “Art and music supports continue to be available,” he said in a public statement. But there would be changes to how they were delivered to make pricing more competitive.

“Currently someone providing art or music support can charge $193 an hour for that service, often with limited evidence of outcomes,” Shorten said.

From February, providers will only be able to charge $193 at a group rate for four or more participants. One-on-one therapy will be capped at about $68 an hour. Participants will also need to provide evidence that a therapy is working for funding to be renewed in their plan, Shorten said.

“We are asking for some outcome from the dollars,” he said. “I like music therapy – I’ve seen it work. Where it demonstrates that [it is] maintaining or improving highly disabled people’s functional capability, great, keep charging.”

Shorten said it would make therapy more affordable for families, particularly children or small budgets, but providers warn it could make them unviable.

The saga shows how sensitive reform is for more than 646,000 disabled Australians who rely on the scheme. Shorten’s changes have introduced an “in and out” list of services for the first time, and will ultimately reboot how eligibility, plans and budgets are determined as he seeks to limit spending on a scheme that has become one of the government’s most expensive items.

“The path to making the NDIS long term is to make sure that the NDIS is funding outcomes. People shouldn’t view this scheme as a way to charge hours,” he said.

People with Disability Australia interim president Trinity Ford said confusion was rife among providers and participants about which impairments and supports would be funded under the reforms.

Shorten said stakeholders had been extensively consulted, but Ford said the agency should not make decisions until it had clearer guidelines for participants and better evidence for what was and was not working.

“We’re deeply concerned decisions are being made before the operational and evidence guidelines have been bedded down,” Ford said. “Ultimately, it is participants who pay the price – losing critical supports when decisions to deny access or supports are made.”

Ryan, Max’s mother, said parents of children on the NDIS understood the scheme needed to be sustainable but were losing faith in the government’s reforms.

“There are so many other things at play with this new system ... I don’t trust that I won’t have Max’s [NDIS] plan absolutely destroyed in the process,” Ryan said.

Providers are also worried. Iani Sujono, a registered music therapist who owns the practice Max visits, said 90 per cent of her clients were funded through the NDIS, and halving the rate would leave music therapists earning substantially less than other allied health workers and make her business unviable.

“We’re working with people who have gone through undergraduate degrees, and then they have gone on to master’s degrees,” she said. “It’s really devaluing to hear in that statement that music therapists … we’re not evidence-based.”

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