Young people with high needs shut out of Canberra respite care under NDIS

At least two thirds of the 120 families relying on Marymead's overnight care for young people with disabilities will be shut out of the service from October 26. One parent fears she may have to surrender care of her son as a result and another said she was lodging a complaint with the human rights commission, as advocacy groups were flooded with calls from distressed carers.

Karna O'Dea relies on Marymead every second weekend to look after her son, Malcolm, who has non-verbal autism. It's a crucial break for the family, a chance for Ms O'Dea and her husband to see a film or go out to dinner and "recharge" after long days caring for a teenager who can't be left alone.

Last month, Marymead informed families it would be reducing overnight care from seven days a week to four, and clients requiring more specialised attention like Malcolm could no longer be accommodated in NDIS-funded places.

Acting Marymead CEO Tracey Hall said at least 70 per cent of the service's clients, who are all aged between five and 25, fell into this high-needs category and would miss out as a result.

Since the roll out of the NDIS, two ACT providers have stopped respite care completely, with only Marymead and the Disability Trust continuing to offer services for young people.

Ms Hall said the decision was a last resort for Marymead, which had been running for some time at a "significant financial loss" due to low NDIS funding for respite care (also known as short term accommodation).

ACT state manager at National Disability Services Stephen Fox said the funding pressures at Marymead were being felt across the sector and the Disability Trust was reporting similar problems.

Under its 2017 price guide, the National Disability Insurance Agency pays a fixed rate of $501.71 per client to providers for each night in respite. Ms Hall said Marymead had spent more than a year speaking with the NDIA and advocating for an increase in funding to better reflect clients with high needs, as well as penalty rates for staff working weekends.

"The problem is the rate is applied to every child regardless of their needs," Ms Hall said. "It assumes one staff member can care for three children at a time but, for those needing one-on-one care, the cost is at least double that NDIS rate."

"Up until now, we've always rostered the extra staff on to be safe...because we were hoping a [NDIS pricing] review would eventuate in a fee that was more workable but it just didn't happen, and we can't go on any longer."

In light of the service reduction, Ms O'Dea said she was seriously considering whether or not the family could continue caring for their son.

"It's not that I don't love him, I love Malcolm, but it's too hard," she said.

"I've been doing this for 28 years, my oldest daughter is high needs as well, but she's happy in a group home now."

Other families who spoke to The Canberra Times expressed similar fears about the "sudden" change to the service.

Nick, who asked that his last name not be published, said Marymead had previously been the last hope for many parents, known for taking "more difficult" kids that other services wouldn't.

His teenage son stays overnight at Marymead once a week and, while he was mostly very gentle, Nick said there were times he was afraid to leave his son alone with his wife and two daughters.

"He's a big fella with a fair bit of muscle behind him so when he gets agitated he will pursue people around the house to try and hurt them," Nick said.

"He'll put holes in the walls, head-butt brick walls.

"My wife had a battle with breast cancer last year and, while she was doing chemo, he was chasing her up the street.

"So when it gets tough, it gets really tough."

Hannelie Botha had used Marymead respite for more than five years for her 10-year-old son, who also has severe behavioural issues, and said there was no where else for him to go.

Ms Botha said the news from Marymead was "the last straw" for her husband, who suffered a breakdown a week ago and was now in hospital.

Lynn Nerdal, who uses Marymead's overnight care for her teenage daughter, said the capped rates for respite care seemed like a "backhanded" way for the NDIA to cut funding to services rather than directly to its clients.

"Canberra is just the beginning, this is going to spread across Australia," Ms Nerdall said.

"So many providers have closed down since NDIS came in."

Despite assurances made to Marymead, Ms Hall said an internal NDIA review of prices earlier this year yielded a "disappointing" funding increase of just $21 a night, up from $480 in 2016.

Marymead would be sitting down with the NDIA in the coming weeks and Ms Hall said she was hopeful the service could be restored in the future.

A spokesman for the NDIA said the agency had commissioned an independent review of its pricing which would consider concerns raised by Marymead.

"The National Disability Insurance Agency remains in discussion with Marymead and the relevant families to ensure that the plans are appropriate to needs and are adjusted in a timely manner as these needs change over time," he said.

Mr Fox welcomed the review, which is due to report its findings at the end of the year, but said an "urgent intervention" was needed for the ACT. As the first jurisdiction to be the wholly in the scheme, the territory had been the hardest hit by funding changes, he said.

"But we've already heard a number of organisations interstate are thinking seriously about whether they can continue with this service."

Mr Fox said the prices seemed to reflect a broader view within the NDIA that respite was no longer as necessary for clients in light of more integrated supports.

"There needs to be more dialogue around that, families are telling us it's critical for them to be able to continue caring," he said.

"If people feel they are unable to be supported caring, there is a risk they will go into crisis, and then there'll be a higher cost to the community."

The NDIA will hold a pricing forum in Canberra on September 19 as part of its review.