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Tuesday, August 9, 2022

The harmful gap between aged and disability care has gone on for long enough: a special investigation

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Aged and disability care are often viewed as separate entities, but it is this lack of integrated thinking that has been the cause of a significant, harmful gap in care for Australian society’s most vulnerable.

Initiated in 2013 and rolled out nationally by 2019, the National Disability Insurance Scheme (NDIS) currently supports more than 518,000 Australians living with disabilities.

On average, participants receive $68,000 each per annum, 22 per cent higher than the maximum funding available under a Level 4 Home Care Package.

But for the highest care needs, such as when a person is living with quadriplegia, support packages can be in excess of $200,000 a year.  

Why are these numbers important? They represent a simple, yet devastating hole in the system.

Currently, if a person with a disability is registered with the NDIS before they turn 65, this coverage will carry over into their senior years.

However, if an older Australian happens to incur a disability post 65, they are left in the lurch, not provided any additional support, save for the standard aged care funding.

We’re not pushing for NDIS for all people aged over 65 in aged care. We just want a solution, for Government to get together and support people with high intensity needs, so they can receive the same standard of care and support as other Australians with disabilities.

Chair of Forward Ability Support, Ander Halvorsen OAM

There are 1.9 million Australians aged over 65 years who live with some form of disability, yet there have been no studies done to indicate how many would benefit from higher level care on the NDIS.

Ander Halvorsen OAM, chair of Forward Ability Support, NSW’s leading spinal cord injury support organisation, is well acquainted with this systemic flaw.

Halvorsen has been living with paraplegia for decades, having sustained a spinal cord injury (SCI) after a motorbike accident in his 20s.

Now aged 72, Halvorsen was teetering on the 65-year-old threshold set by the Government during the NDIS’ initial rollout.

“Because I live in Ballina, in the northern part of New South Wales, it was one of the last places for NDIS to be rolled out,” he tells Aged Care News.

As a product of the piecemeal rollout, arbitrarily phased in, town-by-town, Halvorsen was faced with a challenging dilemma.

“Before I was 65, the local health people said to me, ‘Anders, you should move to Newcastle where NDIS has already been rolled out and then you’ll have NDIS for the rest of your life’.”

It was untenable for Halvorsen; he had been living on the North Coast since 1981 and was not about to compromise his family’s livelihood for the sake of the subsidy.  

“To uproot my family, my job and everything?

“I said, ‘no, we’re not moving’… so by the time it was rolled out in northern New South Wales, I’d turned 65, so I don’t get NDIS.”

Anders Halvorsen OAM, chair of Forward Ability Support, says the exclusion of older persons from the NDIS is putting elders with disabilities at greater danger of harm and untimely death.

What are the consequences of a person with a serious disability, such as a spinal injury, being cared for via the standard aged care system?

Halvorsen explains that care workers ascribed to an older person with disabilities will most likely not be trained nor be prepared emotionally for the intensity of manual assistance required.

“Getting onto the toilet, the difference between a spinal cord injured person and the non-spinal cord injured person is that the carer has to put in an enema and then they have to manually evacuate them.

“Not everybody wants to do that in aged care.”

The consequences for not receiving such a specified service are not just an inconvenience: it’s a matter of life and death.

“I went to hospital 10 years ago, it was big public hospital in the Northern Rivers,” Halvorsen recalls.

“I was in bed and I said ‘I need somebody to toilet, me’.

“They said, ‘we don’t have any nursing staff trained to do that’ and I said, ‘but if you leave me, I’ll die from being impacted.”

Save for this close shave, Halvorsen still considers himself one of the lucky ones.

He has largely lived a self-sufficient thriving life, enriched with a marriage of almost 50 years and family comprising three kids and eight grandchildren.

State-level grants have been a vital life-line for disability supplies, with EnableNSW recently funding his new, titanium wheelchair, and Halvorsen has maintained stable employment over the years, being a small business owner and consultant.

Waiting lists are a barrier unique to aged care services — posing a risk to elders no matter their ability-level. Those in the NDIS don’t have that process. They can get what they need, when they need it, whereas under the aged care system, I have to wait almost a year.

Retired school principal, Mark Hunter

But as chair of Forward Ability Support, deeply embedded in the disability community, he is well-aware that not all Australians with his level of disability are as fortunate.  

“We’re really frustrated… I’m pretty healthy and independent, but a lot of older people with disabilities aren’t, and they really need help,” he says.

“We met this guy who fell down the stairs on his 68th birthday…, broke his neck, and couldn’t get NDIS because he was 68.

“He had an elderly wife, and she couldn’t do everything for him… He virtually needed 24/7 care.”

The gentleman in question passed away, and while Aged Care News does not have grounds to suggest that a lack of funding contributed to his untimely passing, Halvorsen will always wonder if more could have been done to save him.

“I don’t know if it was a lack of care or what… the family was really trying to look after him… It was just a really, really sad experience.”

Living further north, on the Gold Coast, Queensland, Mark Hunter is another passionate advocate on this issue.

The 70-year-old former school principal, author and Toastmasters International World champion of Public Speaking (2009), acquired a SCI in the 1970s and has been using a  wheelchair for mobility ever since.

Let’s acknowledge right up front that home care packages are great for a predictable, ageing process. But living with a disability is not a predictable, ageing process, and therefore that system, while it might meet the needs of many people in Australia, does not meet the needs of those who have significant disabilities.

Mark Hunter

Much like Halvorsen, Hunter did not register for the NDIS in time, not being made aware of the dissolution of previous grants that he had relied on for years for wheelchairs, catheters and other vital assistive technologies.

“This was one of the policy beliefs that the Productivity Commission — which informed the NDIS — did not address,” Hunter tells Aged Care News.

“They assumed that these systems would still be in place, and they assumed also, that they would be equitable in the resourcing of needs.

“And, of course, neither of those things were true.

“It amazed me that the Productivity Commission would operate on such a faulty belief and thereby make a decision to exclude those who were 65 and over.”

Mark Hunter, a retired school principal who lives with paraplegia, says that Government ignorance during the development of the NDIS has caused blatant discrimination against elders with disabilities.

Hunter reiterates that the aged care system, problematic enough for all elders, is manifestly inadequate for those with disabilities.

“Let’s acknowledge right up front that home care packages are great for a predictable, ageing process.

“But living with a disability is not a predictable, ageing process, and therefore that system, while it might meet the needs of many people in Australia, does not meet the needs of those who have significant disabilities.”

Furthermore, waiting lists are a barrier unique to aged care services — posing a risk to elders no matter their ability-level.

“Those in the NDIS don’t have that process,” Hunter notes.

“They can get what they need, when they need it, whereas under the aged care system, I have to wait almost a year.”

Halvorsen adds that, in the context of residential aged care, elders with disabilities are actually neglected through reforms that are fit-for-purpose in the context of empowering elders who are mobile, but put impossible expectations on those who are disabled.

He discovered this as he worked at Ferguson Lodge, a facility in Lidcombe NSW that provides high-level, 24/7 care for quadriplegics.

“One of the Government departments said, because of this ‘person-centred care’ that we’re bringing in, we need every room where you’ve got quadriplegics to have their own cooking facilities in it, so that they can be self-sufficient.

With quadriplegics unable to use their hands, Halvorsen was astounded by the request.

“That would be so dangerous…  it was absolute nonsense.

“As good or as bad as aged care is, you can’t just put a spinal cord injured person in there and expect them to live; they need specialist care.”

The issue is not only relevant to those with physical disabilities.

It took Pamela Mawbey, a retired Sydney journalist, more than 65 years to receive a correct diagnosis for her psychosocial disability.

“I am 74, diagnosed with autism and ADHD late in life, and have been callously cast aside into My Aged Care — on the scrap heap — which has no specific services tailored to my special needs,” she recently wrote in a letter to NDIS Minister, Bill Shorten.

“Having strangers, let alone ones who I know nothing about, not even their last names, come to my place on a regular basis, is not appropriate for autistic adults because of our sensitivities to other people.

“It has been very harmful in fact. I was traumatised after months of it towards the end of last year and have not seen anyone since.”

Autism is about aloneness at the best of times and it is exacerbated with ageing. Once you become old you feel like you no longer matter, that you are no longer relevant, which makes access to the NDIS even more important, not less.

Retired Sydney journalist, Pamela Mawbey

Like Halvorsen and Hunter, Mawbey challenges the assumption that disabilities present secondary to the ageing processes catered to through the standard aged care system.

“Autism is about aloneness at the best of times and it is exacerbated with ageing,” Mawbey tells Aged Care News.

“Once you become old you feel like you no longer matter, that you are no longer relevant, which makes access to the NDIS even more important, not less.”

Peak bodies have united to call for urgent action

Peak bodies across the country are saying enough is enough, that it is high time that this discrimination against elders with disabilities is remedied.

In a joint statement made by COTA Australia, Forward Ability Support, National Disability Services, Physical Disability Council of NSW, Spinal Cord Injuries Australia, SpinalCure Australia, Spinal Life Australia, three key immediate areas for action:  

  1. A short term funding solution for people with high intensity support needs so they can receive the same standard care and support as other Australians with disabilities, regardless of when they were acquired.
  2. A fair and transparent consultation process that prioritises the needs, choices and goals of people with disabilities aged over 65.
  3. A streamlined solution that works for older people with severe disabilities as well as aged care and disability service providers.

Hunter notes that these requests are not new; they directly correlate to one of many unaddressed recommendations from the Royal Commission into Aged Care Quality and Safety.

Recommendation 72, calling for ‘Equity for people with disability receiving aged care’, asks that this gap in coverage is remedied by 2024.

Excerpt from the Royal Commission into Aged Care Quality and Safety, Final Report: List of Recommendations.

But this is too little, too late, according to Hunter.

“We’ll wait til 2024 and everything will be right in the meantime? It’s wrong on so many levels.

“It’s wrong on a level of integrity; it’s wrong in the context of being human.”

Hunter says that even if the Government’s mistake was due to naivety, that is no excuse to delay immediate action to remedy the problem.

“Stupidity was the basis of where we find ourselves now, but ignorance is never an excuse.

“If you or I break the law and we claim ignorance, that we just didn’t know; there’s no excuse for operating under that belief.”

For Hunter, this is another chapter in the all too familiar battle; and he won’t stop until the fate of Australian’s most vulnerable is re-written fairly.

“In my years as a school teacher, I had to fight for my rights, even with the Queensland Government’s Anti-discrimination Commission and won a couple of cases there.

“And now, at the age of 70, I face this discrimination that’s being perpetrated by the NDIS, and having to be forced into a system that’s not prepared or adequate for someone in my condition.”

Hunter says he feels it’s his responsibility to speak out, on behalf of those who can’t and, perhaps, are the ones suffering the most.

… at the age of 70, I face this discrimination that’s being perpetrated by the NDIS, and having to be forced into a system that’s not prepared or adequate for someone in my condition.

Mark Hunter

“Not everybody has a voice, the competence — the comfort, perhaps — to stand up and fight for their rights.

“And nor should they have to, because we live in Australia; we don’t live in a third-world country.”

Halvorsen agrees that immediate action is not too tall an order when the stakes are so high for some of Australia’s most vulnerable elders.

“We’re not pushing for NDIS for all people aged over 65 in aged care.

“We just want a solution, for Government to get together and support people with high intensity needs, so they can receive the same standard of care and support as other Australians with disabilities.”

A spokesperson for the Federal Government’s Department of Social Services provided a statement to Aged Care News, noting that after the National Disability Insurance Scheme Act 2013 passed, a National Injury Insurance Scheme was supposed to be established that would have had the capacity to support Australians aged over 65 with disability care.  

“States and territories have not established the National Injury Insurance Scheme as was proposed,” they said.

In light of the emerging issues, the department is currently reviewing the NDIS and its eligibility criteria.

“The Government has committed to review the NDIS design, operation and sustainability, bringing forward a planned review of the scheme.

“The Government will consult on terms of reference that will consider all available evidence, and look at benefits as well as problems inside and outside the NDIS.”

A spokesperson from the Department of Health added that this consultation process will work across departments to consider the intersecting needs of older Australians who also have disabilities.

“As the Government is reviewing approaches to implementing the recommendations from the royal commission, the Department of Health has been consulting extensively with aged care stakeholders, including those with a disability who are ineligible for the NDIS, on possible reforms for in-home aged care.”

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2 COMMENTS

  1. An excellent article Bianca Roberts. Speaks to the heart of the issues faced by people with high specialist needs. Australia must move away from it’s institutionised mindset where vulnerable people are “categorised” by governments and community as they are perceived to be problematic. Instead, what a country we would become, if we supported all people from birth to death to live their best lives in a dignified way!

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