Why having a national home-care program is a women's issue. (Opinion).

A secretary whose mother is severely disabled by Parkinson's pays $2800 a month in home-care fees, over and above the publicly funded hours of care, puts in 11 hours day commuting and at her paid job, and then does her mother's feeding, bathing, lifting and treatments the remaining hours of her day.

A single mother, caring for a chronically-ill child at home, does the daily work of three shifts of nurses, doing regular heavy lifting alone and carrying out highly complex medical procedures, with her child's life literally in her hands 24 hours a day. Her full-time caregiving responsibilities force her to live on social assistance.

A home-care worker works eight different, irregular one-hour shifts a day, going by bus from home to home from 8:30 a.m. to 10:30 p.m., working for three home-care agencies to earn sufficient regular income.

These few examples illustrate the virtual state of crisis in home care in Canada. Home care is becoming an increasing concern for governments, health-care providers, family members and individuals who need such care. But the burden rests especially on women, who give and receive the vast majority of home care.

Why has home care become such an issue now?

Several significant changes have increased the pressures and expectations on the home care system. Health care reforms - acute hospital bed closures, increased use of day surgery, shorter stays and early discharge - mean more home-care patients now require pre- and postsurgery and medical treatments at home. Mothers are going home within a day of having a baby.

Demographic changes such as longer lifespans of people with disabilities and the population in general, the growing proportion of seniors, and diseases such as HIV/AIDS and Alzheimer's, have also led to an increase in demand for long-term care.

Patients, especially those living with chronic conditions or physical disabilities, are also demanding care closer to home if not in their home.

The movement to 'community-based care' often called deinstitutionalization, has meant an unprecedented number of people are now cared for in the home, in unprecedented ways.

All of this requires a level of care few families are prepared for, physically or financially. At the same time, more women than ever are in the paid labor force, and families are smaller with fewer human resources to rely on.

Throughout these massive changes, the one thing that remains constant is women's responsibility for unpaid and paid home caregiving.

Haven't governments been spending more on community (home) care?

Not really. There have been large decreases in hospital-based spending, but resources put into community-based care have not kept up with the acute care cuts.

For example, despite an Ontario Government commitment to increase support for home care and community health, the proportion of funds devoted to these areas has remained relatively constant (4.7% in 96-97, 4.9% in 97-98, and 5.1 % in 98-99). At the same time, half the acute care beds in Ontario were removed.

In the early days of health care restructuring in Alberta, the government cut $749 million from acute care beds, but added only $110 million to home care over three years.

In Newfoundland and Labrador, informal family support amounts to about 80% of the care provided. Eligibility for publicly funded home care is based on levels of income just above the poverty line; only 1.2% qualify.

Saskatchewan has doubled its spending on home care to $67 million since 1991 but dropped acute care spending by $585 million. One in four home-care recipients receives treatment formerly provided in hospitals.

So who is picking up the tab?

You are. Costs to individuals resulting from changes to the health care system have not been calculated, but there is certainly ample evidence that health care cuts are now being compensated for by the individual, who now has greater responsibilities to pay and provide for herself.

Medical services, supplies and drugs, once paid for in hospital, are no longer fully covered in the community.

When politicians talk about shifting health care to "rely more on home and community-based health care," do you hear them say, "unpaid work"? That's what they mean. Family members provide 70-88% of personal care and services for the aged.

In British Colombia, the Ministry of Health acknowledges that unpaid caregivers provide the majority of care at home. In Quebec, the work done by family members to support dependent seniors at home represents more than half the total cost of such supports.

The combined contributions of community agencies and government are only 10% of the total cost. A Saskatchewan study showed that family members keeping an elderly relative at home save the health care system $24,000 per year per person.

How does this affect women?

Home care is an urgent issue for women for three reasons:

1. Women are far more likely to rely on home-care services;

2. We make up the vast majority of home-care workers; and

3. We also provide 80% of unpaid care to relatives.

Two-thirds of home-care recipients are women. Yet several studies have shown that women receive lower levels of home care than men, even when they have the same level of need.

Three out of four home caregivers are women between the ages of 50-65 years; 10% are over 75.

Women are more likely to help with personal care and domestic chores, while men are more likely to provide transportation, home maintenance, or money management. In other words, the responsibilities of female caregivers are more intense, deeply personal and consistent, while men's duties are less intimate and more intermittent.

Caregiving duties performed by women are more likely to affect their jobs, already at lower pay levels than men. Women lose work time, quit jobs and work part-time, losing not only present income, but also future pensions and security in their own old age, when they themselves may need home care. In one survey, 50% of unpaid home caregivers had left employment or taken part-time work to look after a relative at home.

How are unpaid caregivers coping with all this?

Not very well. A number of studies demonstrate that unpaid home caregivers are experiencing financial, physical, and emotional strain as a direct result of their home-care responsibilities.

In some provinces, to be eligible for publicly funded home-care services, people must first have exhausted the caregiving and support capacities of relatives, friends and community services.

Even before the most recent cutbacks in services, research indicated that caregivers have higher rates of depressive and anxiety disorders and use mental health services twice as much. Older, unpaid caregivers reported increased stress, high blood pressure, exhaustion and susceptibility to physical illnesses.

Home-based caregivers are providing ever-increasing amounts of care at ever-higher levels. Pushing unpaid workers beyond their ability to cope leads to stress and depression, increases their risk of mental or physical breakdown, and reduces the quality of patient care.

What about paid home-care workers?

Their salaries and job security have dropped. Many female institutional employees, laid off as a result of hospital restructuring, are now forced to work in the home care field. Now, they are mostly nonunionized and lack benefits, adequate sick leave or access to injury prevention programs and equipment. They must now pay for their own professional updating, immunizations, insurance and transportation from home to home.

Ninety-five percent of paid homecare workers are women. Homecare workers are disproportionately women of color, Aboriginal and immigrant women. An increasing number are trained, experienced nurses imported from countries such as the Philippines as low-paid domestic workers. They are allowed entry only through Canada's "Live-in Caregiver Program" and kept on 'temporary' work permits.

Privatization of home care has led to lower wages for providers and loss of control over standards. LPNs in home care are earning half of what they received in institutions. In Newfoundland and Labrador, the average wage for a home-care worker is US$4 per hour. As a result of the competitive bidding process for home care in Ontario, wages for home-care nurses have dropped 3-13%.

Workers are being required to work more and faster. In Quebec, the number of visits a home-care nurse must make each day has increased about 50%. The numbers and types of client care are increasing, meaning workers must deal with more severe illnesses, medical conditions or levels of disability.

There is pressure to deprofessionalize home-care work, assigning professional duties to less expensive, less skilled workers.

Workers are facing safety hazards. Home-care workers must work alone, moving individuals and machinery within the home, without the help and equipment available when providing institutional care.

Twenty-four percent of nurses in long-term care reported they had suffered an injury in the previous six months. One study found that home-care assistants suffered 48% of all work-related injuries, although they account for only 13% of the work force.

Home-care workers are facing increased risks of harassment and verbal, even physical aggression from clients.

What needs to be done?

People responsible for long-term home caregiving situations say they desperately need more hours of publicly-supported home care.

They want dependable home-care providers who are properly trained and adequately paid to provide caring, professional help, not custodial supervision, to their loved ones.

They need more information about the home-care system, less confusion and easier access. They want continuity and promptness.

They want an operational long-term care act with an independent complaints office.

They want more sub-acute beds and diligent monitoring of the quality of care by home-care agencies.

Also needed are flexible work policies and family leave in the workplace to accommodate care giving.

So, it all adds up. A national homecare program is a women's issue, and the need is urgent.

In November 2001, a National Think Tank on Gender and Unpaid Care Giving was held by the Centres of Excellence for Women's Health (CEWH). The Report of the Think Tank and a comprehensive analysis of gender sensitive home care research prepared by Marika Morris are available from the CWHN or on the CEWH website http://www.cewhcesf.ca/en/index.html.

A new easy to read booklet on women and home care will be published soon and will be available from the same sources.

The author is the former Communications Coordinator for the Canadian Women's Health Network and now works in the field of long-term care in Ontario. This article is reprinted from CWHN's Network Magazine Spring/Summer 2002, Volume 5, Number 2/3. For more information about CWHN, visit the website: www.cwhn.ca