Time to Provide Funding and Real Choice in Long-term Care

For our first instalment of the Supporting Aging in Place Series, we’re sharing a piece from Patricia Spindel, Ph.D. and Judith Sandys, Ph.D., two long time Community Living advocates who highlight some of the systemic issues affecting long-term care. The parallel to the work that the community living movement has done over generations can clearly be seen. People need real choice to ensure that aging in place is a reality. Institutions that isolate, control and congregate all within the medical model of treatment are inherently problematic for everyone but especially for those who have a developmental disability.

Dr. Judith Sandys is a former dean of community services at Ryerson, a long-standing teacher and advocate for vulnerable people and a member of Seniors for Social Action Ontario

Dr. Patricia Spindel is a retired professor and former associate dean of health sciences from Humber College and the University of Guelph-Humber, and a seniors rights advocate.

Many long-term-care facilities have shown that they cannot provide even basic care to their residents. Developed on a 19th-century poorhouse model, they are inevitably dehumanizing and, almost without exception, dangerous places. COVID-19 has brought this lesson home.

In 2009, the last of the government-operated institutions for people with intellectual disabilities closed, followed by major class-action lawsuits exposing the horrible conditions endured by those who had lived there. No one, irrespective of severity of disability, should have had to live in such places. Paradoxically, at the same time as Ontario was closing down institutions for people with intellectual disabilities, it was ramping them up for older adults.

Societal ageist and ableist perceptions devalue seniors and people living with disabilities. Society values health, wealth, beauty, independence and achievement. Those who are not perceived to measure up are at greater risk, often seen as a burden and drain on society. They are regularly placed in environments that are harmful to their health and well-being. Yet, they include people with rich histories, who have loved and been loved as children, parents and grandparents, and played a part in building Ontario. Surely, they deserve better.

With Canada spending six dollars on institutional care for every one dollar spent on in-home care, many older adults and younger people with disabilities are forced into these largely for-profit institutions, following the money. With public expenditures at 0.2 per cent of GDP spent on home care, a grossly inadequate and overly bureaucratic system has been created that renders any notion of choice meaningless. Admission to LTC happens in the absence of other options.

The Toronto Star has excelled at pointing out the deficiencies in care between for-profit, and municipally-operated and non-profit facilities. What few have mentioned is the impact of institutionalization itself. People with intellectual disabilities who were institutionalized were almost all in facilities operated by the government or by non-profit boards. In contrast, the vast majority of residents now live in LTC facilities operated and/or managed by for-profit corporations — many large, often multinational bureaucracies whose main mission is to generate the highest possible profits for their operators and shareholders.

As research by the Star and others has shown, COVID outbreaks in non-profit facilities were significantly less devastating than in the for-profits, especially chain operations. So why has the government’s response been to provide increased funding to the for-profit sector, rather than invest more heavily in the not-for-profit community-based sector, in order to provide residential and in-home alternatives? This has increased an already huge funding and service imbalance, as the bulk of public money has been directed toward places in which seniors say they do not want to end up — institutions. Where is the funding for a comprehensive and flexible community care system that would offer people real choices?

Of course, the for-profit sector welcomes the expansion of the number and size of facilities. That maintains their status quo. But why is government complicit in supporting a system that commodifies and exploits vulnerable citizens for the enrichment of others? No government should place the interests of for-profit chain operations with a demonstrably poor track record above the needs of citizens.

With 22,000 people dying in LTC facilities every year, the answer is to stop funnelling people from hospitals into them. A fully funded non-profit community care system would do that. Residential and in-home service options would help greatly to downsize and eventually eliminate the public’s forced reliance on these institutions. Younger people with developmental and/or physical disabilities and those with serious mental illness can — and should — be repatriated to smaller shared living and staffed community residences now.

Municipalities and non-profit community care agencies are in a good position to drive the needed change if only government would partner with them.

The government needs to get started in creating real choice. End the funding imbalance between institutions and community care. Move into the 21st-century and join other progressive jurisdictions that have already made the change, and greatly increased the quality of life for elders and people with disabilities.