I am a severely disabled person, unable to care for myself since childhood. Throughout my life, I have relied entirely on my family, nurses and in-home caregivers. Due to my physical limitations, I am unable to shoulder any part of my family’s financial burden — I can only watch helplessly as the cost of care becomes a bottomless pit, swallowing every dollar we have.
With Taiwan’s aging population, the Ministry of Health and Welfare’s Long-term Care plans and the Ministry of Labor’s “pilot project for diversified companion care services” — a program allowing eligible families to hire migrant caregivers for a minimum of four hours at a time that went into effect at the end of March — were supposed to serve as lifelines for severely disabled individuals like myself. There was hope, as discussed when the program was announced, that the out-of-pocket cost of hourly caregivers would be affordable — set lower than the wages of illegally hired caregivers. However, loopholes in the system have plunged families like ours into even deeper despair.
Due to my health and physical limitations, my monthly income is meager — I make even less than a migrant caregiver. My entire family struggles to support me. If not for the home left behind by my grandparents, we would be homeless. The irony is that the house is also what disqualifies me from receiving low-income household subsidies.
As I watch my bank balance dwindle, my sense of helplessness and dejection grows. For families like ours, long-term care subsidies are a drop in the bucket. The medical and care needs for someone completely dependent on others far exceed those of the average disabled person, yet the subsidies are the same across the board.
The Ministry of Labor has attempted to offer solutions for families facing temporary, short-term or urgent caregiving needs — such as when a migrant caregiver runs away, takes leave or when there is no one to provide care.
In the three months since the pilot program began, one of the six units entrusted with its implementation has logged more than 2,000 service hours and assisted 20 clients, averaging at about 10 hours per case, data showed.
When I saw that some families in the program spent NT$25,000 out of pocket for less than half a month of care services, I was envious and heartbroken. Even if I required that level of care, such a price is astronomically high for my family. I deal with my migrant caregiver’s unpleasant attitude daily, but as I simply cannot afford to pay an hourly rate that would improve her job satisfaction, I have no choice but to endure it.
My family cannot afford the hefty agency fees required to find a replacement.
The constant stress of worrying that our migrant caregiver might run away leaves us even more hopeless. Data indicate that nearly half of all migrant workers who go missing in Taiwan were originally hired as in-home carers. If mine disappeared, I would not only lose essential care and support, but also face a period with absolutely no assistance on top of the added burden of the fees to hire a new one.
Hiring a carer comes with no assurances — each time one runs away, it is an emotional and a financial blow. My family is already exhausted from caring for me, yet they still have to manage my carer and act as an intermediary, all while navigating the long-term care system.
Additionally, the quality of care available varies widely. Temporary in-home carers and hourly migrant carers are often unequipped to handle the complex needs of someone with severe disabilities, which has left me feeling abandoned in a void of helplessness.
The policies of the health and labor ministries still lack proper integration, and the disparity between subsidies and actual needs is suffocating. Long-term care cannot solve the urgent needs of those with severe illnesses, while the cost of hiring hourly migrant caregivers is beyond our reach.
My hope of attaining a stable and professional carer to relieve my family’s burden is equal to the disappointment I feel when even our basic needs go unmet and seeing my exhausted family members argue over expenses fills me with guilt.
I long for a more compassionate system. The health ministry should expand its subsidies for severely disabled people and relax criteria for low-income households to allow families who own a home, but lack means to receive adequate support.
Meanwhile, the labor ministry should consider limiting how frequently carers are allowed to change employers, which would stabilize the workforce. A fund should also be established to ease the burden of out-of-pocket expenses and hiring costs associated with long-term care.
Care workers should receive training to ensure that even people working temporarily in the industry can meet the needs of those with severe conditions. Quality care should not be a privilege reserved for wealthy people.
Those changes would ease the burden on my family and bring warmth to disadvantaged homes. My dream is for care services to be a social safety net — not a ball and chain.
I sincerely hope that the government’s policies receive an injection of humanity, so that people with disabilities can live their lives with dignity and hope.
Liu Hsiao is a freelancer.
Translated by Kyra Gustavsen
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