'Unnecessary and cruel': People with MS to lose home care

Marlene Robinson has been living with the degenerative neurological condition multiple sclerosis for 30 years, with no movement in her legs and limited use of her arms.The 80-year-old former City of Bayswater councillor and staffer to former Western Australia Premier Geoff Gallop is wheelchair bound and depends on support workers from MSWA for essential personal care, helping her out of bed to shower and dress."I can't do that myself, the arms aren't working too well," Ms Robinson said.Her husband, former anthropologist Michael Robinson, 86, said they could not do without the care."It means that just the basic daily needs can be met," he said."Whereas if we were just doing it on our own, we probably couldn't do it."Marlene Robinson and her husband Michael said they depend on support workers for her personal care. (ABC News: Nicolas Perpitch)But the couple recently received a letter from MSWA informing them and 75 other clients that the non-profit organisation would stop providing the Commonwealth-funded Support at Home services.The program is meant to help older people stay at home instead of moving into residential aged care.Fears for futureMSWA explained it could not continue because changes to aged care by the Albanese government last year had excessively increased costs and the administrative burden.The couple received a letter from MSWA saying they are not continuing the Support at Home program. (ABC News: Nicolas Perpitch)It has left Ms Robinson profoundly concerned for her future as she and the other clients, including 16 in the regions, scramble to find a new but inevitably more expensive provider.She knows other providers' rates are about double MSWA's and she will be able to afford much less care for her basic needs."I don't know what I'll do without it," she said."When I think about it, I sort of stop. I can't think about the horrific future."MSWA was adamant it was not abandoning its clients and would continue providing specialist neurological services.Chief executive Melanie Kiely said the federal government last year replaced the Home Care Packages program with Support at Home.Melanie Kiely said it had become unsustainable for MSWA to continue to provide the program. (ABC News: West Matteeussen)"The Support at Home brings in a lot more administration, a lot more regulation into the way we have to do things," she said.'We understand the pain of this and that is something we want to work with (clients) to transition. Having said that we've kept our prices down so low for so long and we just cannot do it sustainably any longer."Doubling of ratesMSWA charges $60 an hour for personal care on weekdays, half the market average of $125 an hour.That means clients face a doubling of the hourly rate.Marlene Robinson faces the prospect of going into residential care. (ABC News: Nicolas Perpitch)Ms Robinson estimated she would have to pay $1,000 extra from her own pocket to get the same amount of care as before."It's a huge amount for us. I mean, we could do it for a month, but you know, we have to survive," Ms Robinson said."It just seems so unnecessary and cruel," her husband added.The couple is now considering whether Ms Robinson can stay at home or will need to go into residential care.An industry-wide problemMSWA is proposing to help clients switch to a partner provider.But this is an industry-wide problem.Catherine Stoddart, chair of Advanced Ageing WA and chief executive of Brightwater care, warned higher costs and extra compliance requirements would drive smaller providers under."For every hour of care, 31 minutes are spent on administrative work, so therefore people don't get the amount of care that they're entitled to," she said."If you're a small provider or have got a small number of clients, that's just too much of a burden to keep going."Catherine Stoddart said smaller providers may not survive. (ABC News: Nicolas Perpitch)Aged Care Minister Sam Rae's spokesperson said the government's aged care reforms were delivering "stronger provider accountability and enhanced system oversight to support safe, high-quality care"."We are closely monitoring the rollout of Support at Home to ensure older Australians can access the care they need, when and where they need it, at prices that are reasonable and transparent," the spokesperson said in a statement.