Dementia patients warned off seeking home care in case Australia’s aged care algorithm cuts funding

People with dementia were warned not to apply for home support because of fears their care would be downgraded by the government’s aged care algorithm.Documents released to Guardian Australia under freedom of information (FoI) laws reveal the warnings came within weeks of the November rollout of the algorithm, which is used to determine funding packages and priority of need for older Australians requiring home support.Home support packages are critical to help prevent avoidable hospital admissions, deterioration and early entry into residential care.Days before the algorithm was rolled out, the government barred aged care assessors from overriding the Integrated Assessment Tool’s (IAT) decisions, even if the level of funding and priority allocated were wrong or inadequate.Dementia Australia wrote to senior health department staff on 8 December to say that since the addition of the algorithm, “We remain very concerned about the feedback we are receiving”.The organisation cited the example of a man caring for his wife with dementia who was on a level three home care package, entitling her to around eight hours of support each week.But her dementia had progressed and she needed to be reassessed so she could access additional care.The woman’s husband was “advised by his local assessment service not to pursue a reassessment as they have seen a number of people with dementia receiving less or no support following IAT assessment, even if their care needs are increasing”.Sign up for the Breaking News Australia emailThe Older Persons Advocacy Network (Opan) sent a paper to department officials in February warning of deaths occurring due to the failing assessment system, and people with “extreme needs” being left without adequate support before their deaths.“The inability of clinicians to intervene” and “over-reliance on automated decision-making is contributing to preventable deterioration and in some cases, death,” the document said.In one example given by Opan, the algorithm refused a funding upgrade for a rapidly deteriorating person, forcing them to pay for private care despite the assessor’s view their existing package was grossly inadequate.A senior health department staff member shared concerns ahead of a meeting between the department and advocacy groups in late December, the FoI documents show.“Assessment orgs are telling [people] not to get an assessment as there is no guarantee they will get more funding,” the internal email read, adding that assessors were telling advocacy groups they had not been properly trained on the IAT.Prof Tanya Buchanan, the CEO of Dementia Australia, told Guardian Australia: “We remain concerned about the IAT and the aged care assessment process being able to meet the needs of Australians living with dementia, their families and carers.”She said she wants the system to include a return of clinical oversight.A spokesperson from the health department said rather than human override being returned, the government will legislate a new “assessment escalation pathway”, giving assessors the option to raise cases to a system governor – in this case, the secretary of the Department of Health, Disability and Ageing.“It will sit alongside the existing review provision where an older person can request a review by contacting the department,” the spokesperson said. “Assessment organisations themselves will initiate a referral based on the clinical judgement of the assessment delegate.”Carers and advocates have repeatedly shared concerns that review processes for wrong algorithm decisions are lengthy, and that older people are at risk of deteriorating or dying while they wait.skip past newsletter promotionafter newsletter promotionOpan’s director of policy, Samantha Edmonds, said that without further details of the government’s new escalation pathway “it is difficult to determine the effectiveness of the process”.“We look forward to clarification and consultation on the proposed changes, and to continuing to engage with government as those details develop,” she said.“The IAT algorithm has been an ongoing challenge and concern for older people. These assessments have a real impact on an older person’s life, so it is crucial that human oversight remains part of the decision-making and outcomes.”The FoI documents show that Ageing Australia, the national peak body for aged care, in February sent senior department officials a comprehensive discussion paper outlining issues with assessments including examples of people being under-assessed, especially those with dementia.“Participants being assessed are being approved for less than or the same level that they are currently receiving,” the paper said.Among many examples provided were two separate cases of people living with Parkinson’s disease, both with complex care needs, no friend or family supports, and requiring intensive medication, diabetes management and personal care including wound care.Both were reassessed under the algorithm as requiring no additional support or care despite declining health.“The assessors advised that the algorithm did not support a higher level and one assessor suggested seeking a new diagnosis … to potentially change the outcome instead of applying for reconsideration,” Ageing Australia wrote.The organisation included feedback from assessors that the IAT could not understand the nuance of functional changes in people living with dementia.The warnings from the advocacy groups came alongside concerns and alarm raised by state and territory health department staff including the head of the Western Australian health department, Dr Shirley Bowen. Department staff logged hundreds of cases, provided to their federal counterparts, of the algorithm systemically under-assessing older Australians, while Bowen warned of “catastrophic” outcomes.The Commonwealth Ombudsman is investigating.Do you know more? melissa.davey@theguardian.com