Behind Closed Doors


May 27, 1999

Dear Friends:

This report from the Care Watch Toronto PhoneLine was produced under the auspices of Care Watch Toronto. It speaks to our deep concerns about in-home care which has arisen from listening to the stories told by our callers and from observing the government’s relevant policies and funding announcements.

We hope that you will read it with respect for people who have told their stories and with the serious attention to the problems they have revealed.

Yours sincerely,

Ethel Meade, Chair PhoneLine Steering Committee & Tammy Smith, PhoneLine Co-ordinator


FOREWORD

WHO CARES ABOUT HOME CARE?

SENIORS CARE, because their quality of life, their ability to remain in their own homes, may well depend upon whether the public home care system is functioning adequately.  Staying in   familiar surroundings, holding on to the identity that one’s own chosen ambiance sustains, this may loom as the most emotionally-weighted aspiration in a senior’s life.

FAMILIES CARE.  Estimates of the amount of eldercare performed by families range between 80% and 90%, with most, though not all, such service performed by women. For the vast majority of families, it is natural and satisfying to take care of their elder members – for children and grandchildren (and often nieces and nephews) to care for their parents or their aunts and uncles, for elderly mates to care for one another.

It is not always possible, however, for families to provide all the care an older person needs.  Adult children do not always work and reside in the same place their parents do.  If parents are fortunate enough to have children close by, their daughters and daughters-in-law most often belong to two-earner families, whose standard of living depends on their earnings and who can, therefore, offer only limited help. It must be noted also that children are sometimes estranged from their parents and for this, or other reasons, may refuse to care for their parents. Elderly wives and husbands may not, of course, be physically capable of providing the care needed by their mates.

And our society provides neither recognition nor compensation for eldercare.  The Canada Pension Plan allows pension-year credits for years when a mother drops out of the workforce to care for children under the age of seven.  No such drop-out provision applies for a daughter who drops out to care for her mother or father.  The Employment Insurance system provides for six months maternity leave, with the guaranteed right to return to one’s former job. There is no such compensation or guarantee for those taking time out for eldercare – or, as it is now often referred to, “eternity leave” to care for dying parents.  Recently an Ontario woman was fired from her job for requesting unpaid leave to care for her dying mother.

If the publicly funded home care system fails to provide adequate care for their parents, it is usually the children who must pick up the pieces.  And most of them will try their best to do so, whatever the cost to their own health or their own economic security.

Just as the parents of chronically ill or disabled children are at serious risk if the public system of care lets them down, the children of today’s seniors, the “baby-boom” generation, are at risk if the home care system for their parents fails them.. That is why our PhoneLine receives more calls from family caregivers and from concerned family members and others than from clients themselves.  Adequate and high quality in-home care will, increasingly, be the concern of “baby boomers,” as more and more of them have to deal with the problems of their aging parents.

DOES ANYONE ELSE CARE?  Since government policy decisions have such a profound influence on what the home care system is designed to do and funded to do, we need to know how much the government cares.  The end of the first year of Care Watch PhoneLine operations coincides, fortuitously, with the month that Ontario citizens are preparing to elect a new provincial legislature.

Our challenge, to ALL PARTIES and to ALL CANDIDATES is: Do YOU care enough about the frail elderly to build a home care system that supports them when they need help with the activities of daily living?   Or do you think home care is primarily for acutely ill post-hospital  patients, with nursing home beds for seniors who can’t take  care of themselves?

Of the COMMUNITY CARE ACCESS CENTRES, who now arrange for all publicly-funded in-home care, we ask: Do you care enough about the quality of your service to pay serious attention to all the stories in this report?  They did not all happen in your area, but the calls were from so many areas and the concerns from all areas were so similar that no one should think complacently, “It can’t happen here.”  Any of the gaps, inadequacies and failures that you read about here could happen anywhere.

May 1999

CARE WATCH TORONTO

This report is produced under the auspices of Care Watch Toronto, a network of organizations and individuals dedicated to improving the quality of life for those who receive care in their own homes.  Formed originally in 1995 as Metro Consumers for Community-based Long Term Care, its aim was to monitor how consumers were faring as a new system of home care was becoming established. Our name was changed in December 1997 to Care Watch.

Care Watch Toronto works to influence public policy with regard to in-home care.  We reach out to the community, distributing literature, speaking at community meetings and conducting workshops and forums to spread the word about how the home care system works and how it can be improved.  We have also developed an experiential professional development workshop, called “The Caring Game”, which has been facilitated with a number of service provider groups and is available for any group that is interested in becoming more sensitised to how it feels to be a recipient of in-home care.

Another Care Watch Toronto project, the PhoneLine, was a project begun in 1997 with three-year funding from the Trillium Foundation.  Its purpose is to collect information about the experiences of in-home care recipients and use the information to draw a clear picture of how the system is working, identifying where there are gaps and inadequacies.

THE PURPOSE OF THE CARE WATCH PHONELINE

Home care is a service that is delivered behind closed doors, by one worker attending the needs of a family or an individual.  Invisibility characterises all aspects of in-home care. Who is more invisible in our youth-worshipping culture than the elderly – particularly women, who are the majority of the elderly?  Or the chronically ill or disabled, in a world where strength, agility, speed and physical perfection are idealised?  And what work is more invisible than the work done by health care workers, almost all women, in the privacy of clients’ homes?

Care recipients, their families, the staffs and boards of Community Care Access Centres, many of the government officials responsible for these Access Centres: all hope that the home care services will be of the highest quality. But we know that high quality service never comes about automatically, that it has to be monitored and controlled.

How, then, do we establish quality control in a situation where actual performance is observed only by the care giver and the care recipient?

Download the PhoneLine Report