Cheryl Paradella was only just keeping her head above water, managing a demanding full-time teaching job while caring for two children with multiple disabilities.
"It's like walking on eggshells, you just don't want to upset the applecart," she said.
"How do you try to keep the peace and lead a normal life, whatever normal is? I only managed because I had good support from respite services."
Her 18-year-old son has Asperger syndrome and Tourette syndrome while her 17-year-old daughter also has Asperger syndrome and a complex mental health disorder.
When the children joined the National Disability Insurance Scheme this year, Mrs Paradella and her husband, who has post-traumatic stress syndrome, believed respite support would continue.
"We were told no one would be worse off under the NDIS but, in actual fact, we are worse off because respite is not automatically provided for carers," she said.
The TAFE teacher, who lives near Campbelltown in Sydney's south west, lost access to carer respite services when the NDIS was introduced in her area five months ago. She was recently diagnosed with cancer and faces a six-week recovery from surgery she had last week.
"I really have no idea what's going to happen," she said. "I don't know how we'll cope."
Mrs Paradella's experience was not unique, according to a report from Anglicare Sydney, released on Monday, which found the NDIS did not alleviate pressure in terms of the hours carers spent looking after family members with a disability.
Half of all carers studied said their caring load had not been reduced under the NDIS.
"I don't know how we'll cope." Cheryl Paradella no longer has the respite services she depended on. Photo: Janie Barrett
Anglicare advocacy and research manager Sue King said carers were in danger of slipping through the cracks as the $22 billion NDIS was rolled out across the country over the next three years, eventually supporting 460,000 people with a disability.
"It's not really clear how carers are going to be supported under the NDIS," she said.
"We would like to see respite services be maintained because they are a really important pillar in the life of a carer. If we're not caring for carers, everything falls apart."
A spokeswoman for the National Disability Insurance Agency, which administered the scheme, said: "Supports that maintain a carer's health and wellbeing will be considered."
A separate report from non-government sector peak body National Disability Services, also released on Monday, identified gaps in the scheme based on responses of 550 service providers.
The 2016 State of the Sector report found demand for services was increasing as the NDIS was rolled out but almost 40 per cent of service providers reported they could not meet demand and one in five believed the clients they turned away would receive no service at all.
"We know the NDIS will drive demand growth," chief executive of National Disability Services Ken Baker said. "The question is whether supply of services can sufficiently respond to that. This report identifies constraints on supply."
While new providers will enter the market under the NDIS, services in NSW are expected to be put under pressure as the state government, which operates about 40 per cent of disability services, including respite programs, group homes and clinical care, transfers the work to the private sector.
Troy Wright, assistant general secretary of the NSW Public Service Association, which represented many of the state government's Ageing, Disability and Home Care (ADHC) employees, said a public sector safety net was needed if private providers could not meet demand.
"The NDIS was designed with the best of intentions but the state government is using the scheme to abrogate its responsibility to the most vulnerable people in our community," he said
"People who fall through the cracks will land in the child protection system, the criminal justice system and the public health system."
- The NDIS is designed to support the person with a disability, giving them choice and control over the services they receive.
- Supports provided under the NDIS are expected to take pressure off informal carers, usually family members.
- Respite care is a form of support for carers, allowing them to take part in everyday activities or take a break from a caring role.
- Respite support for carers in not automatically included in the NDIS package of the person they care for.