There is an ironic twist to the story of how Care Watch Toronto came into being. The first meeting was held on June 25, 1995. Invited were all those who had been participating in the community advisory committees for each of the multi-service agencies (17 in Metro Toronto) mandated by the Bob Rae government's Bill 173. The aim of that legislation was to create an alternative to institutional care for seniors disabled by age-related functional deficits in carrying out the normal and instrumental activities of daily living. In other words, enabling seniors to "age in place". On June 26, 1995, the Rae government was defeated by Mike Harris' Conservatives and one of their first acts was to cancel Bill 173 which had not yet been enacted because the necessary Regulations had not been established.

Once the participants of the June 25th meeting recovered from the shock, they came together again and decided to call themselves Metro Consumers for Community-Based Long-Term Care, a designation that they hoped would make their objectives immediately and completely clear. From the begin-ning the organization defined itself as a network of organizations and individuals whose mission was to improve the quality of life for all those who needed or received care in their own homes. The assumption behind that mission was that in-home care that allowed seniors to "age in place" would be provided in some form but not necessarily one that met the organization's quality standards.

This assumption proved correct when the Harris government announced its intention to institute its own form of in-home care to be delivered by what were to be called Community Care Access Centres (CCACs). The mandate of these centres was to provide care for persons released from acute care hospitals as well as supportive care to seniors coping with age-related functional deficits. The post-acute element of this mandate was essential as the government's Health Services Restructuring Commission was closing hospital beds everywhere, leading to what came to be called "sicker and quicker" discharges. Service Directives from Queen's Park were clear and decisive - the CCACs must take care of the sickest first. As more and more beds were closed, the needs of post-hospital patients grew to a point where it became increasingly difficult for them to stretch their budgets to include supportive care for seniors. It should be noted that the CCACs were created by Queen's Park without any legislative mandate.

It was during this period (1997) that Metro Consumers approached the Trillium Foundation and received funding to establish a phone line, the phone number to be widely publicized, where recipients of in-home care and/or their family members could report on this care as they experienced it. At this time it was realized that the name, Metro Consumers for Community-Based Long-Term Care, would never work as a phone salutation so it was changed to Care Watch (and incorporated as Care Watch Toronto Ltd. in the year 2000.) With rent-free offices at Taylor Place, volunteers staffing the phones and a part-time paid coordinator, Care Watch operated the phone line for two years. The questions asked by the volunteers elicited both problems and suggestions for improving the services.

Care Watch's report, Behind Closed Doors, included some horror stories but also incorporated major suggestions, of which the almost unanimous one was to ensure continuity of care, that is, the same worker coming for all or almost all visits. It was released in 1999, just prior to the re-election of the Harris government and was in no way meant as an attack on the CCACs. Rather it was constructive criticism and suggestions and, at least in Toronto, it was welcomed by the CCACs.

Over the winter of 2001, after the government had announced that it was drafting legislation to define and support the CCACs, Care Watch, along with other like-minded organizations (including, among others, Canadian Pensioners Concerned, the Ontario Coalition of Senior Citizens' Organizations, Older Women's Network, the Ontario Health Coalition) conducted a series of seven public forums in all parts of the province. These forums allowed over 800 people to have their voices heard prior to the tabling of the anticipated legislation. A report on these hearings, entitled Long Term Care - in Limbo or Worse? was released in 2002 and drew substantial media attention.

Care Watch also developed an experiential professional development workshop, called the Caring Game. It is played with a board similar to a Monopoly board and facilitated for one or more tables for any provider organization or post-secondary school. Its aim is to sensitize players to the way the care they provide (or are being trained to provide) can be experienced by care recipients The production of this game was Trillium-funded. The game sets have been sold for $50 each and, during the first several years, funding was available to support a part-time facilitator and her travel to other parts of the province.

Care Watch has also undertaken a qualitative research project to give voice to family care-givers and their experiences and allow them to articulate the kinds of support they need to carry out their indis-pensible, but unpaid work. The report on this project was released in 2002, entitled House Bound: the Voices of Full-Time Family Caregivers.

While the first project, the Care Watch phone line, focused on the quality of care seniors were receiv-ing from the then newly-established CCACs, in recent years persons who need in-home care greatly outnumber persons who receive it. Care Watch's focus has, accordingly, become the extension and enhancement of all programs that support seniors (as well as the physically disabled, those with mental illnesses and children with special needs) in their desire for continuing care that enables them to remain in their own homes.

• care provided by trained non-professionals, who help persons with activities of daily living (such as eating, dressing, toileting and personal care) as well as needed instrumental ac-tivities (such as homemaking, home maintenance, shopping, laundry and even a walk around the block)
• care provided over the long term to deal with continuing needs
• care that is preventative, as it often delays and/or substitutes for more expensive institutional care (such as that provided in publicly-supported long-term care homes and acute care hospitals)
• care that supports the individual's independence and sense of well-being, militating against isolation by allowing them to remain in and interact with their families and communities
• care that provides respite for the indispensable family care-givers, who, aside from all government support services, actually provide between 80 and 90 percent of elder care as well as care for children with special needs and younger family members with acquired brain Injuries or other disablements.

Supportive home care can be provided in a variety of ways. It can be provided by agencies contracted to the CCACs or provided directly by community support agencies, or through supportive housing programs established in non-profit housing projects by community support agencies funded for this purpose by the Ministry of Health and Long Term Care.

In June 2005, Care Watch organized a think tank called Missing Pieces. The aim was to bring together people interested in and knowledgeable about the virtual disappearance of supportive home care and to discuss ways of getting this "missing piece" of health care back on the public agenda. With the collaboration of the Agora Foundation and Dr. Mark Nowaczynski, the think tank attracted attendees with a variety of backgrounds and expertise, including media personalities, funders, advo-cacy organizations, bank officers.

Dr. Nowaczynski's film House Calls had, at that time, not yet been released by the National Film Board, though it has now become very well known. It shows a number of his patients too frail to be able to consult him at his office and for whom his house calls could be literally life-savers. A doctor who made any house calls at all was already a novelty and at that time OHIP restricted the percentage of a doctor's billings that could be for house calls. This film was shown at Missing Pieces and it provided an excellent focus for the lively discussion that followed. Because it was clearly impossible to conclude an afternoon's discussion with a focused plan of action, we invited participants to join an ongoing committee to continue planning a public campaign.

Care Watch has been funded to organize a series of Round Tables with speakers focusing on various aspects of supportive home care. It also has conducted surveys of both community agencies (re: diversity issues) and the public, including attendees at the Round Tables, as well as persons visiting agencies where our questionnaires have been posted. The survey asked "What do you think you need in order to be able to age at home?" Some of the many answers received have been published in a booklet Aging at Home: Notes from the Community.

Since the reorganizing of the provincial health care system into Local Health Integration Networks (LHINs), Care Watch has directed its attention towards developing its ability to interact with the LHINs, even while they have been, and to some extent still are, works in progress. Four of Care Watch's Board members have applied and been accepted as members of the Toronto LHINs Seniors' Advisory Panel, with one of them also a member of the Seniors' Council and another working on the sub-committee to create a navigation model that can identify and help seniors at risk due to frailty or marginalization. Another member of our Board is also a Board member at the Central (North York/Barrie) LHIN.

As with the CCACs when they were first established, Care Watch does not consider the LHINs to be enemies. Care Watch's aim is rather to find the best ways of working with them on the various health care issues that members face. Of course, attention currently is directed at the Aging at Home Strategy which was certainly welcomed when it was announced in August 2007. Since this initiative came with concrete funding, at least some good things are happening and will continue to happen over the next two years.

• new supportive housing programs have been funded (including expansion of some established programs).
• a Seniors' Independence Program, which will provide a basket of services from which seniors can select the services most useful to them, has been established in a small area of the Toronto LHINs territory as a trial project
• transportation services for seniors have been centralized and six new vans added to the service, with funding also allotted to create an electronic booking system
• safe discharge from hospitals through the Home at Last Program, which will provide escort service, including medication and grocery pickups, and attendant care until the CCAC service starts.
• a community mental health framework which aims to help seniors and their caregivers find appropriate psychogeriatric services
• seed money to help some grassroots groups in one community find innovative ways to serve marginalized seniors in their neighbourhood.

These are all useful undertakings. The major concern is that the level of funding, which will continue for two more years, is on a scale that suggests a pilot project. The total funding for three years is $1.1 billion. That's a lot of money when compared to personal bank account, but out of an annual health care budget of over $35 billion, it is a very small portion to assign for seniors who, we all know, are its biggest users. Interpreting the Aging at Home Strategy as a pilot project to validate the most useful programs is our most optimistic interpretation of the current level of funding. But that means that for most people at least two more years to wait for funding that will make these proven programs available to all who need them. When a person belongs to the fastest-growing segment of the population, the 80-plus, two years can look like a very long time. But we always hope for the best.

Ethel Meade, Vice-Chair, Board of Care Watch Toronto Ltd.