When Dr Ken Baker moved to Canberra to take up his position as CEO of National Disability Services he didn’t expect to become a carer himself. Six months after their move, his wife had a massive stroke. Sustaining physical impairment to this day, more significantly she still cannot speak, write or communicate using any symbolic language.

He says the response of friends and neighbours in a new city was “enormously heartening”. But inevitably, he says, that help was temporary. Those friends and neighbours went back to their own lives. But disability is permanent.

From Wesley Mission’s report ‘Giving disability carers a break’.

The role of caring fell to Ken and, he says in part to his eight-year-old daughter, who found the roles in her family reversed. “No longer was her mother caring for her, she was helping to look after her mother.”

Ken shared part of his experience as a carer at the launch of a new Wesley Mission report this morning, looking at the lives and needs of those caring for people with a disability.

One-third of all Australian households include a person with a disability. 4.2 million Australians have a disability and 2.7 million provide informal care to people with a disability. So when Rev Keith Garner, CEO of Wesley Mission says service provision for this group is a huge issue for Australia, he’s not exaggerating.

“Disability is not a side issue; it’s a central issue,” he says.

The Government’s Commission of Audit, released last week, listed the National Disability Insurance Scheme (NDIS), carers’ payments and the Disability Support Pension amongst 15 key areas recommended for budget cuts. Wesley Mission’s CEO Rev Keith Garner says while there is still bipartisan support for the NDIS, he is concerned at suggestions that the scheme may be delayed, and that services outside the NDIS—specifically, services that care for the carers—may be cut.

“The loud message that we want to give is that every time we delay it, there are costs. There are fiscal costs, but there are caring costs too. Every time you don’t  do something, there are still costs in not doing it. We say very strongly, from our own view of Christian care, that it’s important that it happens and that it happens swiftly.”

The Wesley Mission report, Giving disability carers a break looks at the life of a disability carers through a series of surveys and interviews, emphasising the importance that services for carers have on their quality of life.

The report found 82 per cent of carers said their mental health would decline if they could not access services to help them in their day to day duties and 71 per cent said their stress would increase if services were not provided.

Ken Baker emphasised the relentless nature of the role of carer, and the need to sustain carers for the long term. He says for three months after his wife’s stroke, he could rely on the availability of friends and others, but “it’s the three years, the 13 years, the 30 years that Disability support services become absolutely critical to families being able to sustain their role of providing care and support to a family member.”

Rev Garner says the Wesley Mission report is one of the first to look at the mental, physical and financial impact that disability services have on carers, and what the impact would be if those services were taken away. But what the report also shows is how compassionate and resilient carers are. He is adamant that carers get the continued and increasing support they need, and that the Federal Treasurer, Joe Hockey, hears the disability sector’s warnings that a delay or cut to that support will only mean greater financial challenges in the future.

“We fought very hard to ensure that disability is at the centre of the agenda. If it’s pushed to the side in a debate about people’s personal taxes … that would be tragic.”

For the full report, click here.