Our home care system isn’t cutting it.
People with disabilities, seniors, their loved ones, care workers, and advocates in Alberta have long called for improvements and expansions to our increasingly fragmented and underfunded home care system. Following recommendations made in the Facility-Based Continuing Care review, the government is set to increase the amount of in-community care by 9%. But such a major expansion needs to come with more than a shift in who is delivering care: we need to see reforms to the way that care is delivered, and funding to ensure that care needs are being met, and workers are being compensated fairly.
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Here are the facts:
Albertans’ home care needs aren’t being met. In a 2018 StatsCan review, 433,000 adults in Canada reported unmet care needs. Due to the misallocation and an ultimate lack of government funding, individuals requiring home care are frequently denied the resources they need to survive and function as members of their communities. Demeaning, outdated, and wholly inadequate assessment processes dissect people’s care needs into tasks, which fundamentally denies them the opportunity to direct their own lives. While other essential tasks like housekeeping and grocery assistance regularly go unfunded. Current caps on care hours fail to reflect the actual needs of disabled people and seniors, frequently forcing them to forgo meals, showers, bathrooming, and other life-sustaining tasks. These sacrifices, while diminishing the individual’s quality of life, are linked to additional, preventable long-term health issues and their associated costs.
People are paying out-of-pocket for their home care. Under our current funding model, people with care needs and their loved ones are too often left scrambling to cover the costs of care or “extras” not covered by the public system. And co-pays like those proposed by the UCP government would act as an additional cost-prohibitive barrier for those in need of home care. Our system is set up to allow the best home care only to those whose families can afford to pay for it. But as many people who rely on home care are also on fixed incomes, and given that disabled people are already one of the most financially stratified and impoverished groups, this means too many people are being left unable to pay for the care they need.
Home care workers aren’t being treated fairly. Alberta is experiencing chronic staffing shortages throughout our healthcare system, which have gone unaddressed by this government, and home care is no exception. In fact, Home Care Aides and Personal Support Workers are among the poorest paid health care workers in Alberta, enduring some of the poorest working conditions as a result of decades of systemic privatization and underfunding. For-profit home care providers employ a precarious workforce of underpaid and often undertrained care workers, who are constantly being asked to do more with less. These workers too often do not have the support to safely provide high quality home care, while high turnover compromises continuity of care for people who rely on it.
Family caregivers can’t keep up. Without adequate funding to meet their care needs, many people in need of home care are left to rely on friends and family. More than 1 in 4 working-age people are caregivers to their loved ones, spending a total of 647 million hours a year providing unpaid care! Our home care system depends on these caregivers to make up for chronic understaffing and underspending—to the tune of over $12 billion a year. Friends and family forced to do care work to maintain an ethical standard of care for their loved ones often burnout, with little to no supports from our home care system. Individuals without loved ones who are willing and able to assist with caregiving face a grim reality: they are forced into unnecessary and costly institutions where they are too often denied basic “personal freedoms, decision making and autonomy.”
Privatization compromises care and equity. Albertans have been clear that we do not want to see public funds provided to private, for-profit operators. Yet in the summer 2022, the UCP government released a request for expressions of interest and qualifications (RFEOIQ), opening the doors to an even greater role for private, for-profit companies in the delivery of our home care. Home care is already one of the most privatized sectors of our healthcare system, resulting in a fractured system in which services are incredibly difficult to access and navigate, and in which workers are undertrained and undersupported. The profit motive shifts the focus away from delivering the best quality care, and towards efficiency in the name of cost savings. But as we’ve seen before, ‘savings’ found via the privatization of our continuing care system come directly at the cost of unfilled care needs for seniors and disabled people.
This is about all of us. Many Albertans—regardless of medical history, financial position, or background—will require home care services at some point in our lives. Without increased funding, disabled Albertans and seniors are continually denied their right to live independently. With Alberta’s population aging, and with more of our continuing care system slated to be provided in-community, robust revisions to funding allocations, assessments, and long-term care services are necessary to expand and strengthen our home care system, for all Albertans who need it now and in the future.
We need increased funding and systematic, disability-led reform to Alberta’s home care system. Major changes to our home care system are already underway. This expansion has the potential to help more people than ever to remain safely in their homes and their communities, while reducing the strain on our already overwhelmed hospitals and acute care system. Alternatively, we could see this expansion used as a means to further silo seniors and disabled people, and to perpetuate their treatment as commodities for private companies to profit off of and neglect.
Albertans with care needs deserve dignity and respect. We’ve already witnessed the detrimental effects of an underfunded care system with the disproportionate number of fatalities in long-term care facilities during the ongoing COVID-19 pandemic. It’s critical that our home care system be scrutinized, reorganized based on direct input from the disabled community, and supported with increased funding in order to protect the autonomy of all Albertans who rely on its services.
This campaign was created with collaboration and leadership from disability activists Karli Drew, Daniel Ennett, and Erin Novakowski.