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Of the thousands of young people with disabilities living in aged-care facilities, only a few hundred have been moved into the community since the NDIS rollout began in 2013. By Rick Morton.

Young people with disabilities still living in aged care

The minister for the National Disability Insurance Scheme, Stuart Robert.
Credit: AAP Image / Mick Tsikas

Seven years after the National Disability Insurance Scheme began, government estimates suggest the number of young people with disabilities who have moved out of nursing homes into the community with its support could be as low as 180.

One of the original hopes for the $22 billion NDIS was that it would unlock new accommodation options for the thousands of young people with disabilities stranded in residential aged-care homes.

Instead, the agency in charge of the scheme’s rollout only recently began counting how many people aged under 65 have been freed from inappropriate nursing-home arrangements – a situation the Royal Commission into Aged Care Quality and Safety labelled a “human rights issue”.

In responses to questions at senate estimates, the National Disability Insurance Agency revealed that, as of September 30, 2019, “it is estimated that the range of participants likely to have left residential aged care is in the vicinity of 180-320”.

That figure is across the life of the NDIS and, even at the upper estimate, represents less than 5 per cent of the thousands of young people stranded in residential aged care.

In the middle of 2017, this figure was estimated at 6243 people.

Since then, the numbers have fallen to about 5300 young people, which the NDIA recorded as an 18 per cent decrease in its most recent quarterly report. However, The Saturday Paper has confirmed most of these people did not leave aged care – they simply turned 65 and are no longer recorded as “young people”.

In August last year, the NDIA began receiving referrals directly from federally funded aged-care assessment teams (ACATs) “in the event [a] younger person is facing urgent circumstances” and is at risk of being placed in a nursing home.

Between August 7, 2019, and March this year, there were 368 such referrals to the disability agency. Only 63 participants were diverted from aged care “to other accommodation options”.

 

In its interim report, released in October, the aged-care royal commission was frank about the state of the decade-long promise to end the practice of placing young people in nursing homes.

“The failure to develop a proper understanding of the circumstances and needs of younger people in residential aged care, together with the continued entry of younger people into residential aged care at undiminished rates, indicates a lack of sufficient interest by the government in the plight of these people and a level of complacency about the capacity of existing policy settings to solve the problem,” the commission’s report read.

“… The rhetoric and buck-passing that has perpetuated the admission of younger people into residential aged care, particularly those who are admitted from hospital with a disability or with palliative care needs, has been going on far too long.

“Australia now finds itself with a human rights issue that is costing people their independence, dignity and wellbeing. Action must be swift. It must be thorough. And it must be considered.”

The explosive testimony in the report sparked the Australian government to completely redraw its lacklustre “action plan” to tackle the issue. That plan, published in March last year, committed to halving the number of people aged under 65 entering aged care by 2025.

The new plan instead promises no person in this group will be living in residential aged care by 2025.

A spokesman for the NDIA says that since the new plan began, it has more than doubled the number of specialist support planners working with young people in nursing homes, to 80.

NDIS Minister Stuart Robert also announced a transitional “medium-term” accommodation option for people who need a place to live while they wait for a permanent home to be built or modified using specialist disability accommodation funding.

Last month, Robert also relaxed the rules on using that permanent-housing funding to allow young people to live with family, partners or even friends.

“These significant initiatives have begun to show some positive outcomes, but there is still much work to be done,” a spokesman for the NDIA told The Saturday Paper.

“Fewer people under the age of 65 years are entering residential aged care – 536 people under the age of 65 years entered in the June 2017 quarter, compared with 332 in the December 2019 quarter, representing a 38 per cent decrease.”

 

While most of the 950 young people who left nursing homes over the past two years simply “aged out” of the category, The Saturday Paper understands that some died awaiting support from the government that would allow them to live independently.

According to one source within the NDIA, however, the disability scheme still remains the best chance the country has to move large numbers of young people back into the community.

“The NDIS is seen as the first real opportunity to have a lasting impact and to move people out of residential aged care so they can live in the community,” they said.

And progress elsewhere in the government has been glacial.

The Department of Health was given $4.7 million towards meeting the new target of having no person under 65 in aged care by 2025, with funding for “a detailed analysis of younger people currently living in aged care … to better inform new policies and pathways to find alternate accommodation”.

This includes the commissioning of a survey through Ipsos Public Affairs to “analyse existing aged care and NDIA datasets on younger people who are currently recipients of permanent residential aged care in approved places”.

Another Health Department initiative, the “self-auditing” of ACATs, won’t begin reporting results until April next year.

“In particular, the measure ensures that the ACATs actively turn their mind to and are satisfied there are no other care facilities or care services more appropriate to meet the person’s needs prior to any younger person being approved for care under the Aged Care Act,” a department spokeswoman said.

“Results of self-auditing will be included in formal performance reports to the Department of Health from April 2021. The self-audit outcomes will reveal whether ACATs have correctly applied the new processes.”

 

Young people with disabilities find themselves caught at the intersection of two enormous social programs, both of which are currently the subject of royal commissions.

The aged-care royal commission has provided for the first time an estimate of how much extra money is likely to be required to fix the dangerous, crumbling residential and home care system. By its estimate, released in a consultation paper about the financing of the sector on June 24, the commissioners believe an extra 50 to 100 per cent in funding on top of current levels is required to help ensure quality, safety and availability of aged-care services.

Taxpayers fund about three-quarters of all aged-care costs, which are currently about $27 billion annually. Conservatively, then, the commission believes at least an extra $13 billion is needed each year – and potentially more than $26 billion.

How much of that comes from government or on a user-pays basis or – most likely – a combination of the two is yet to be decided.

“These broad parameters are intended rather to convey the scale of the funding challenges if we are to improve the quality and safety of aged care for a growing population of older people,” the commission says in its consultation paper.

“… We will hear further evidence in coming months and are therefore still considering the precise form of the recommendations that we might make. However, it is already clear that significant reform is required to eliminate the lottery that exists as a result of variable waiting lists to provide additional certainty for Australians that their aged care needs will be met in a timely and affordable way.”

The rollout of the NDIS, meanwhile, was due to be finished this month, but the scheme won’t be fully delivered for another three years.

“The scheme is projected to continue to grow and to reach about 500,000 participants within the next three years, of which about 478,000 are expected to be aged 0 to 64,” the scheme’s most recent quarterly report says.

Curiously, Stuart Robert has been using a more rubbery time line – committing to having the scheme completed “within five years”. His office referred questions about this discrepancy back to the NDIA, which said, through a spokesman, there has “been no change”.

“The NDIS is expected to be supporting up to 500,000 participants by 2023, which is within the next five years,” the spokesman said.

“The minister has consistently spoken about scheme numbers in the context of reaching 500,000 participants within or over the next five years. This is not inconsistent with the three years identified in the COAG quarterly report.”

Owing to delays in the rollout, the final budget outcome for the 2018-19 financial year, released in September last year, revealed the government booked a saving of $4.6 billion in one year from the NDIS, although the actual underspend was closer to $6 billion.

Prime Minister Scott Morrison intervened to divert the difference back into the scheme to afford higher payments to service providers.

Numbers have been slow to come into the program, but Robert said almost one-third of NDIS participants – more than 110,000 – are receiving disability support for the first time in their lives.

This article was first published in the print edition of The Saturday Paper on Jul 4, 2020 as "Care out of place".

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Rick Morton is The Saturday Paper’s senior reporter.