Stories From LTC
ONLY A FALL AWAY
Two years ago, even after four negative tests, I got all the symptoms of COVID except for fever. When breathing got so labored that my worried wife wanted to rush me to hospital, I refused for fear of being intubated when one in three didn’t survive it. Instead, I unpacked my CPAP mask to pump air into my lungs, thereby avoiding hospitalization.
Now almost 77, I have severe sciatic pain and am afraid of falling as I crawl with two canes. Since it might land me in hospital, imagine how worried I am today after the enactment of Bill 7. It allows hospitals to move patients in alternate care into nursing homes far from home and family support – against their will. It requires patients to pay for transportation, allows health information to be sent to facilities without consent, and permits hospitals to charge patients refusing to leave. Seniors like me, who are only a fall away from being hospitalized, are terrified of later being expelled from hospital to a nursing home we don’t like – unless we pay the steep ransom to stay.
Bill 7 has deepened our fear of hospitalization. Although it violates the rights of elders and people with disabilities, dozens of hospital CEOs wrote an open letter supporting it, thereby turning sanctuaries into menaces, like swords over our heads.
It didn’t have to be this way. Seniors’ advocates like me have pleaded with government to redirect some of its billions for new beds into better funding for home and community care – especially since over 90% of us prefer that to nursing homes. The premier’s own Council on Improving Health Care and Ending Hallway Medicine said as much in its 2019 report. It identified the lack of early intervention and prevention as causes of the hospital crisis. These drove patients to hospitals rather than underfunded home or community care, resulting in the hallway medicine that further stresses families. The report also affirmed that patients wanted information on publicly-funded care options, better communication, and funding to follow them.
But government ignored the recommendations of its Council and seniors advocates who pleaded for alternatives to long-term-care. Backed by hospital CEOs and Ministry bureaucrats, it opted instead for legislation that railroads hospitalized seniors into nursing beds emptied by Covid – great for nursing homes, awful for seniors.
Why didn’t the CEOs support seniors rather than legislation abrogating our right to choose where and with whom to recover, or fade away? I choose home for both.
Salvatore (Sal) Amenta Co-Founder, Seniors for Social Action Ontario
"Home is where we form our sense of self – the very stuff of our identity. We do so in close association with others. Home is also the material expression of self – a sort of scaffolding that holds us together. In our homes, we see ourselves reflected back – even in the small things like a flower vase or a family picture. It is quintessentially private. And yet home is also public. Our front doors beckon others in. Outside, we engage with the community – neighbours, shopkeepers, bus drivers. They are part of who we are. Living life my way and in the community is the very essence of independent living. And home is a crucial enabler for this to happen.
And home is exactly what is denied to large segments of the population......The lack of ‘home’ damages children, persons with disabilities, older persons, and others.
Institutionalization represents an extreme form of segregation – so extreme that it self-evidently amounts to unconscionable discrimination. Even if Article 19 of the UN convention on the rights of persons didn’t exist (right to live independently and be included in the community) it would have to be inferred from the prohibition on discrimination and extreme segregation."
(From: The London School of Economics and Political Science -
Crystallising the Case For Deinstitutionalization, Knapp et al, 2021)
"An institution is neither a home nor a place of care. An institution is a closed system where problems of human deprivation and indignity are quietly managed, where societal failings are hidden, and where people, individually or, as we now know, by tens of thousands, can die without
Dr. Catherine Frazee
Professor Emerita, Ryerson,
former Chief Commissioner of the
Ontario Human Rights Commission
"Without legal avenues to challenge their situation, persons with disabilities deprived of their liberty become invisible and forgotten by the wider community. Indeed, due to the mistaken belief that those practices are well intentioned and beneficial, their situation and well-being is hardly monitored by national preventive mechanisms or human rights institutions."
Office of the High Commissioner,
Rest in Peace Sparky (Terri) Johnson
SSAO is devastated at the tragic loss of another of our core members - Sparky (Terri) Johnson. Sparky was a kind, compassionate woman for whom the fight for social justice for older adults in long-term care facilities was her life's work. She was determined to advocate for alternatives to these institutions, and to stop the neglect and abuse occurring in them. Her dedication will be forever remembered by all of us.
Sparky, an Indigenous woman, had strong spiritual beliefs about her path in life that required defense of those who suffered. A stroke survivor herself, she was a role model for many.
Sparky was the victim of a homicide and was found in North Pickering. Her room mate has confessed to her murder. It is heartbreaking that she died so tragically.
Rest In Peace Don Weitz, 1930 - 2021
We are all saddened today as we mourn the loss of another co-founder of Seniors For Social Action Ontario (SSAO), Don Weitz.
Don was a long time activist for the rights of psychiatric survivors, and was often seen at demonstrations protesting everything from racism to supporting the Mother's Day March for people with developmental disabilities.
He was an eloquent writer and street poet as well as a significant support to many people struggling with homelessness, addiction, and mental health issues.
With SSAO he offered an important voice concerning the over use of psychotropic medications in long term care facilities, and the treatment of individuals with psychiatric disabilities living there. He was a strong advocate against institutionalization because of his first hand knowledge of institutional abuses and his own mistreatment.
Don's was not an easy life. His own personal experience of tragedy, discrimination, and oppression may have overwhelmed someone with a lesser spirit, but Don pressed on, speaking out about the things that mattered to his last days.
His strong, unwavering voice and kind heart will be greatly missed by those of us who knew him for decades.
Rest in peace, Don. Yours was a meaningful life well lived.