With a good circle of friends and supporters, some home and health care and a very committed local association, Gordon Ferguson, a long-time self-advocate and People First member was assured of his wish to stay at home during his final years of failing health. Douglas Cartan, one of his friends, remembers Gordon and talks about the need for life-long community living for all people who have a disability and the importance of good friends, willing partners, and home and health care to help make that happen.
As long-time Brockville Association Board member, self-advocate and People First member Gordon Ferguson considered his failing health in 2018, his last year of life, he asked his circle of friends and supporters not to place him in a nursing home. He had a decent home, health and personal support and wanted to stay in his home with his wife. Gordon knew the effects of being institutionalized after some 17 years growing up at Rideau Regional Centre in Smiths Falls. Gordon knew what it was like to be away from family and friends, to be controlled by others, to have life strictly regimented, to be kept from his interests, to be bored with no opportunity to learn things or contribute in some way, to be lonely, harmed and hurt. Without saying it Gord knew the value of aging in place in your home for life with family and good people around you. And that is what happened.
Unfortunately, so many seniors today in long-term care institutions (also called nursing homes) are not sharing Gord’s experience of aging in place. The Covid tragedy raging through these institutions is horrendous. With more than 3,700 deaths, over 15,000 infections and rising daily. We are seeing the worst tragedy one can remember to unfold before our eyes. The Ford government has been unable to do much about it. In response, however, the Conservative government did pass legislation last summer to make it more difficult for family members to sue for negligence in the treatment of loved ones who died in these facilities. Many seniors who died were also experiencing dehydration, malnourishment, abuse and neglect as reported by the Canadian Armed Forces who were called into several Ontario LTC institutions last Spring. Many sick, frail and elder residents were not permitted to be transferred to hospitals. They were not valued enough and the consequences have been devastating.
One of the key lessons for us all, but especially for family members who are vulnerable because of their disability, is that home care is a critical component of a comprehensive, community-based 21st-century elder care system.
Most people with disabilities will age and all people who age are likely to become disabled in some way. The current home care system in Ontario that currently assists about 700,000 people is not nearly good enough to meet people’s need and desire to remain at home as 91% of seniors demand. The Home Care option is not nearly ready to deal with the huge numbers of baby boomers that are on the cusp of needing more home and health care and alternatives to the large LTC institutions.
There are thousands of people who have a developmental disability in LTC institutions. None should be there. With adequately funded home and health care and small supportive living situations, we know that all people can be accommodated in their home and community, lifelong.
It is time for all Ontario voters to raise their voice to their political representatives and demand a better community-based home and health care system that allows people to age in place as they wish or alternately, if that is not possible, in small supported living arrangements tailored to one’s need.
Douglas J. Cartan is the co-founder of Seniors for Social Action Ontario (SSAO) and former Executive Director of Brockville and District Association for Community Involvement (BDACI).