MS patients face care crisis as nonprofit halts home support program

Marlene Robinson has spent thirty years managing multiple sclerosis—three decades of progressive paralysis that has left her legs immobile and her arms barely functional. At eighty, she is wheelchair-bound and entirely dependent on the support workers who come to her home each day to help her out of bed, into the shower, and through the basic rituals of dressing. Her husband Michael, eighty-six and a former anthropologist, watches her navigate what she cannot do alone. "I can't do that myself, the arms aren't working too well," she said. Without the workers, Michael said plainly, "we probably couldn't do it."

Then, in recent weeks, a letter arrived from MSWA—the nonprofit that has been providing her care through a Commonwealth-funded program called Support at Home. The organization was pulling out. Seventy-six clients in total would lose the service, including sixteen scattered across regional Western Australia. The letter was formal. The decision was final.

MSWA, the organization explained, could no longer absorb the cost. The Albanese government's aged care reforms, implemented last year, had fundamentally restructured how home care operates—replacing the old Home Care Packages program with Support at Home. The new system brought with it a cascade of administrative requirements and regulatory compliance that MSWA said it simply could not sustain. Chief executive Melanie Kiely acknowledged the weight of what was happening. "We understand the pain of this," she said, but the math no longer worked. "We've kept our prices down so low for so long and we just cannot do it sustainably any longer."

The numbers tell the story. MSWA has charged sixty dollars an hour for personal care on weekdays—roughly half the market average of one hundred twenty-five dollars. Clients who move to another provider will face rates that double or more. For Marlene Robinson, the arithmetic is brutal: an extra thousand dollars a month from her own pocket to maintain the same level of care. "It's a huge amount for us," she said. "I mean, we could do it for a month, but you know, we have to survive." She and Michael are now weighing an impossible choice—find a way to pay double, or accept that she may need to leave home and enter residential aged care.

What MSWA is experiencing is not isolated. Catherine Stoddart, chair of Advanced Ageing WA and chief executive of Brightwater care, described it as an industry-wide crisis. The new compliance framework demands that for every hour of actual care delivered, thirty-one minutes must be spent on administrative work. For small providers or those serving a limited number of clients, the burden becomes unsustainable. "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," Stoddart said. Smaller organizations are being driven toward closure, she warned, which will shrink the pool of available providers and further concentrate care in the hands of larger, more expensive operators.

MSWA has committed to helping its clients transition to other providers and says it will continue offering specialist neurological services. The federal government's aged care minister, through a spokesperson, defended the reforms as necessary for accountability and oversight, emphasizing that the government is "closely monitoring" the rollout to ensure older Australians can access care at "reasonable and transparent" prices. But for Marlene Robinson and seventy-five others, the monitoring offers no immediate relief. The choice between affording care at new rates or entering residential facilities is no longer theoretical. It is now their immediate reality.