On September 12, 1998, the Board of the Kingston, Frontenac, Lennox & Addington (KFL&A) Community Care Access Centre (CCAC) announced that more than 2000 local people who depend on home health care services will lose all homemaking services and one-third of personal care services. Cutting these services will hurt patients and their families, put a strain on community volunteering resources, increase the risk of abuse and create hardship for the home care workers who will lose work and wages.

The Issues

1. Allocation of community health care resources

Funding community health care on a equalized per capita basis fails to take into account the economic and demographic differences between communities. These are some of the factors which justify a higher cost of community health care for the KFL&A region:

• According to the 1996 Census, our senior population has increased more than 35% since 1986 while the general population has increased by 18%.
• KFL&A area has a 10 year history of working toward an integrated care delivery system. Even before restructuring, we had hospitals operating at a lower than average cost (per weighted case) because there has been a greater use of community care resources. The greater cost of home care in our community is not the result of poor practice but of good practice.
• As a Health Science Centre serving patients from many Ontario communities our local CCAC undertakes the discharge planning for patients who are being released into other CCAC districts. This work is not included in the Ministry's analysis of financial resource needs.
• As a teaching centre for nurses and health care aides, students placed in the field must be taught supervised and assessed by the CCAC.

2. Future losses seem inevitable

All indicators show that demand for home health care services will continue to increase. Homemaking and personal care will be cut for 4 ½ of the coldest months this year. There is grave doubt that these services will be reinstated at the same level in the next fiscal year without additional funding. However, if demand continues to increase without increased financial resources, these services may be completely lost forever.

3. Community Health Care is Underfunded

Many communities are facing CCAC budget deficits as they struggle to meet the greatly increasing demand for community care in the face of hospital cutbacks and closure.

4. Taking a "Whole Community" View of Health Care

Despite promoting the benefits of "integrated" health care, the Ministry of Health has not integrated its health care budget. By not integrating the budgets of community care, long term care and hospital/doctor care, the Ministry of Health has inadvertently set up a competition for existing health care dollars.

5. Entitlement to Basic Health Care

Many core medical care services such as I.V. therapy, antibiotic therapy and pain management have been shifted from the hospital setting, where they were entitled services, to the community setting, where they are not.

Recommendations

1. We urge you to fund the KFL&A CCAC shortfall for the 1998/99 fiscal year in order that frail and ill people not lose important home services and vital personal care services while reviewing the formulae for funding community care services.

2. A per capita funding formula does not adequately address health care needs. The policy covering resource allocations to CCAC's must be amended to ensure that it does not compromise public health. To this end we recommend that a weighting formula be developed in order that unique local circumstances can be addressed in deciding resource allocations to individual districts. We suggest that the weighting formula include, but not be limited to:

• severity and complexity of patient needs using a model similar to that used by the hospitals;
• demographics of the region;
• availability of and burden on family caregivers;
• costs of case management / discharge planning for patients living outside of the CCAC district

3. In light of a widely held health care philosophy that it is better to care for patients in the home than in the hospital, where-ever possible, that you table legislation to amend the Long Term Care Act of Ontario to reinstate home care as an entitled health care service.

4. This government petition the federal government to amend the Canada Health Act to include home care in its provisions.

1. The Council on Aging

The Frontenac-Kingston Council on Aging (COA) is a politically independent, volunteer-driven agency devoted to addressing the issues of aging in our community. From our deep sense of social responsibility to our community, our province and our country we speak out when we perceive unfairness that will impact on our generation and future generations of seniors.

There are those who feel that seniors resist any change. Rest assured that this is not so. Our generation has lived through, and indeed fought for, the changes that followed the great depression and World War II. We have adapted to unprecedented technological change, post-war social change, and most recently industrial globalization. Our generation has met and embraced dramatic changes and experience has taught us well. We know that not all change is good, that change for the sake of change is futile and that all change must be monitored and measured against a concrete set of principles and values.

With this experience as our guide, we feel that the Council on Aging must respond to a recent, and negative, change in our community. "By silence, I could be a collaborator in chaos." Kogawa Obasan

2. Background

2.1 The Cuts to Home Care Services

Funding for the Kingston, Frontenac, Lennox & Addington Community Care Access Centre (CCAC) has remained capped since 1995. This has been the case despite the fact that the need for home care services has increased dramatically since that time.

On September 17, 1998 the Board of the CCAC announced that more than 2,000 local people who depend on home care services will lose all homemaking services and one-third of personal care services for the period from November 1, 1998 to March 31, 1999. The Board of the CCAC took this painful and unprecedented step in order to address their projected budgetary deficit of $1 Million for the 1998/99 fiscal year.

This budget deficit was forecast in April 1998, resulting in the establishment of a waiting list for homemaking being implemented in May 1998. The demand for these services has been growing and the number of qualified patients on the waiting list is growing steadily. Therefore, despite the waiting list system the budget deficit continues to loom.

2.2 Action to Date

Shortly after the CCAC Board announced these regrettable cuts the COA received several expressions of concern from the community. We immediately wrote to Honourable Elizabeth Witmer, Minister of Health asking that her Ministry cover the CCAC's projected deficit in order to allow critical services to continue uninterrupted while the funding policy was reviewed to bring it in line with other funding policies.

In further response to these concerns we undertook consultation at several levels. We held a public meeting in order to hear the concerns of patients and their families. We have consulted several organizations, including Hospice Kingston, Providence Continuing Care, the Seniors Association, the Ontario Older Women's Network, the Ontario Coalition of Seniors Organizations and Care Watch Ontario. This paper is the product of that research.

3. Impact of the Cuts

The impact of these cuts will be enormous. Beyond the direct impact to the patients who will lose these services, there will be a significant impact on their families or other caregivers, the volunteer agencies who will try to fill the gaps left by these services and the home care workers who will lose hours and wages, if not their jobs.

3.1 Patients

Patients who lose homemaking services will be losing grocery shopping, meal preparation, dish washing, vacuuming, laundry and other basic home cleaning. These services are not provided to patients as a convenience. These services are a critical component of a patient's health care. They are provided because the patient is unable to handle these tasks on his or her own, has no one to provide the service and because proper meals and a clean environment are critical to good health. In an October, 1998 National Home Care Survey undertaken by the College of Family Physicians of Canada, doctors identified homemaking services as a home health care service most needed by patients, second only to nursing.

Without homemaking services, many patients will attempt to do these chores on their own. Some may venture out onto icy Winter streets to get some basic groceries. Others may injure themselves trying to lift laundry baskets, or attempting to vacuum stairs. Many others will make do with the single hot meal provided by volunteers from Meals on Wheels and live in squalor because they are physically incapable of doing the cleaning. Without these basic services and the monitoring of the situation, the quality of life of many of these patients will be significantly reduced. This may lead to emotional or mental health problems. Removing these services places these people, many of whom are frail elderly, at considerable risk.

The impact of losing personal care services is even more dramatic. Losing assistance with bathing, dressing, putting on an assistive device is more than just inconvenient. It is a critical loss that puts the health of these people at significant risk.

Loss of both of these services has profound impact on the dignity and independence of the patients. In study after study it has been found that a sense of independence is the most critical factor in seniors' self assessment of wellness. These cuts are going to cost the seniors who lose these services their sense of independence. This may well impact their health and lead to hastened institutionalization.

It is important to put a face to these citizens of Ontario who are on waiting lists for services or who will lose the homemaking and personal care services they presently have. These are people who have been assessed by CCAC caseworkers as needing homemaking services to maintain their health or aid in their recovery. They include people recovering from increasingly short stays in hospital, those who are receiving chemotherapy, are terminally ill, preferring to die at home or who are on a waiting list for a nursing home or chronic care bed. (See attachment #2, Personal Stories)

The CCAC has announced that between now and the date the cutbacks are to take effect, that home care workers will be teaching patients and their families how to do some of the services to be cut. While this is a laudable effort, it is fraught with difficulties. Home care workers are not trained as educators. They do not have the training or experience to undertake community health promotion education. The time frame for ill or elderly patients or overworked caregivers to learn the skills is much too short.

As mentioned earlier, these cuts are scheduled to take place in Winter, a time when increasing costs of heat make it difficult to free up money to purchase needed services. It is also a time when it is treacherous, if not impossible, for frail or ill seniors to strike out on their own to purchase groceries or other necessities. It is also a time when weather can make it difficult and risky for family members (when they are available) to travel distances to provide needed care.

While we abhor the establishment of a two-tier health care system, it maybe that there are some patients who, either alone, or with the assistance of family, choose to purchase the services that they will lose with the anticipated cuts. Chances are they will prefer to continue to have the service provided by the same agency as the CCAC previously paid. However, it has been suggested that Part II, Items 28 (2) of Bill 173 may take away that choice.

We ask that you clarify the meaning of this item to ensure that patients who are able to purchase services to replace those lost maintain complete freedom of choice.

3.2 Families of Patients

It cannot be taken for granted that all the patients affected by these cuts have caring families who are willing and/or able to step in to fill the gap that will be created by these cuts. 47% of seniors live on their own in our communities. A significant proportion of our older population are widowed. Their children, if any, may live at a distance. Some others may have children in the area but most of these will have jobs and families of their own. Many middle-aged women, often referred to as the "Sandwich Generation" are attempting to provide care to elder members of their families as well as looking after teens in their own homes and having to work outside the home for economic reasons.

Some older patients live with an elderly spouse. Adding the extra burden of filling the gap for these lost services will put many of these caregivers at risk of health breakdown. It is counter productive to save money in community care by creating a burden which may well force the caregivers into the health care system.

3.3 Community Volunteer Programs

As always, our community will try to find a way to provide for our people in need. At this very moment the staff and volunteers of various helping agencies are struggling to find a way to meet the anticipated gaps in services. Meals on Wheels is anticipating a large increase in demand for its services. Hospice Kingston is strategizing ways to meet increased calls for assistance. Community service organizations such as the Seniors Association are already trying to recruit new volunteers for their helping programs. The difficulty is that the volunteer resources in our community are already heavily burdened. Agencies are facing enormous difficulties recruiting and keeping volunteers for increasingly more responsible and sophisticated tasks. As the call for their services grow, so then do the requirements for volunteer training, management and support. Staff of many volunteer programs in our tenuously funded community agencies are already stretched to near breaking. In addition, each background security check for volunteer caregivers cost approximately $17.00.

Where agencies are able to provide volunteer help, it is important to recognize that having qualified volunteers provide services formerly provided by professional home care workers puts both the patient and the volunteer at risk. The patient must risk having another stranger in their home, or maybe several, as volunteers come and go. This can cause great uncertainty and stress for an ill or elderly person and greatly increases the risk of abuse. The volunteer is put at risk by providing services to frail patients in difficult situations with limited professional backup or support.

3.4 Home Care Workers - Lost Jobs

It is certain that many home care workers will lose hours, money and possibly jobs when the CCAC makes its cuts. This will have an impact on those workers and their families, and on the economy of the community at large.

4. The Issues

4.1 Allocation of Community Health Care Resources

The Government's Commitment to Community Health Care:

"Every dollar we save by cutting overhead or by bringing in the best new management techniques and thinking, will be reinvested in health care to improve services to patients" May 3, 1994, Mike Harris, The Common Sense Revolution document.

Our Community Reality:

"The Minister of Health has already closed a hospital (in Kingston), and her own officials have stated that of the $52 million that you're taking out of health care in the Kingston area, only $36 million is being returned to the area." John Gerretson, MPP, Kingston and the Islands, September 29, 1998, Hansard.

This summer the Ministry of Health announced that they will be reinvesting savings from hospital restructuring in community health care - but not for every community. Ten of the forty-three CCAC's will not receive any of the $83 million reinvestment fund - nine because they were operating at above the per capita cost in the province.

The Honourable Cameron Jackson stated in the legislature, September 29, 1998, that the CCAC in Kingston is receiving $144 per person as compared to York region's $59 per person.

It appears to be the government's position that funding for community care should be on an equalized per capita basis rather than on the properly assessed, identified needs of patients in the community. With respect, we believe that this position is overly simplified and flawed. Individual communities have unique needs that can't be measured simply by counting heads. Should such a principle be applied to OHIP funded services there would be a huge outcry when people were refused doctor or hospital services because their community health care costs were above the provincial average. Fortunately, citizens in all provinces are protected by the Canada Health Act which prohibits this approach.

This "age/gender averaged per capita" funding principle fails to take into account the many economic and demographic differences between communities which affect their community health care needs. We would argue that there are several features unique to the Kingston, Frontenac, Lennox and Addington area that justify a higher cost per patient for home care.

1. Kingston and Area is Closer to Achieving Integrated Health Care

   KFL&A has a 10 year history of working toward an integrated health care delivery system. Even before restructuring, we had hospitals operating at a lower than average cost (per weighted case) because there has been a greater use of community care resources. The greater cost of home care in our community is not the result of poor practice but of good practice. The KFL&A health care community has lead the move to integrated health care provision.

   It has been policy in this community to make greater use of community health care resources in order to reduce cost and provide better care. Due to this policy, patients have long been released from hospital earlier requiring more care and maintained in their own homes rather than institutionalized. It stands to reason, therefore, that our community care will cost more. If an integrated health care system, emphasizing care in the community is the preferred model of delivery, then adequate funding is an essential component.

   We ask that you take into account the fact that the KFL&A region has lead the way in the move to integrated health care delivery, and that the greater cost of community care reflects success in achieving the goal of moving care into the community and away from hospitals.

2. Kingston and Area is a Desirable and Growing Retirement Community

   An abundance of cultural and medical resources, combined with proximity to three major cities has made the Kingston area the retirement choice for a growing number of seniors from across the country. Many military personnel as well as graduates of Queens and R.M.C. choose to return to this region to retire. As a result, many seniors living here have relocated from distant communities and do not have immediate family nor close friends living in the region act as supplementary caregivers. Many rely solely on a spouse and the services of the CCAC for their health care.

   This need for extra care in these circumstances is recognized in the regulation governing General Eligibility Criteria, "6. Caregiving and support exceeds capability of relatives, friends or other community resources."

   We ask that you include a weighting factor in the Ministry of Health's resource allocation which recognizes the number of people who may have greater home care needs due to the absence of able family caregivers.

3. We Live in a Health Sciences Centre Community

   As a Health Sciences Centre, patients requiring sophisticated surgery and cancer treatment are drawn from many Ontario communities. It was recently reported that heart patients were transferred from Ottawa for surgery in Kingston.

   Our local CCAC undertakes the discharge planning for patients who are being released into other CCAC districts. This work is not included in the analysis of financial resource needs. We are advised that this cross-boundary case management actually takes more time as plans must be discussed and approved with case managers in the receiving district to ensure that all the services are in place when the patients returns home.

   We ask that you include a weighting factor that recognizes this increased cost to a local CCAC of providing service to patients returning home to another district.

4.2 A Future Filled with Service Cuts

The present cuts in homemaking and personal care services are expected to last for 4½ months, to the end of the 1998/99 fiscal year. Thereafter, the CCAC forecasts that services will not be able to be restored to the existing level without additional funding. If the demand for CCAC services continues to grow at the current rate, there will be an additional shortfall next year. Our community will be facing a major crisis should this be allowed to occur.

4.3 Under Funding of Community Health Care

By arguing for a resource distribution plan that takes into account care needs, we are not suggesting that other CCAC districts should be funded at a lower level. Quite the contrary. We have discussed the situation with members of other communities, and are aware that several CCACs, including Toronto and Ottawa, are struggling with potential deficit situations. It is our position that Community Health Care is underfunded in our province.

When the concept of community care was announced by this provincial government, it was our understanding that as hospital beds were closed and patients were sent home, "quicker and sicker", ALL who met the provincial eligibility guidelines would be provided with adequate care, including homemaking and personal support services. (38% of the CCAC budget supports acute care patients.)

When the CCAC became the gatekeepers of the long term care system with its shortage of beds, we understood that people who were waiting for long term care beds would be eligible for care at home, including homemaking and personal care.

As the government told us of its plans for our health care system, we understood that we were moving toward a model of care which would support and encourage people staying in their homes as long as possible. That implies the provision of resources for care at home, including homemaking and personal support services. If this "community delivered health care" model is indeed the preferred method of health care service delivery, then we must immediately invest appropriate financial resources to ensure that our most vulnerable citizens are not left at risk.

4.4 Taking a "Whole Community" View of Health Care

Hospital restructuring in our area is not achieving the goals anticipated by the Health Services Restructuring Commission's recommendations. Kingston General Hospital is running a significant deficit while Hotel Dieu, which is slated to close, has a surplus.

In an effort to operate within a severely restricted budget the hospital is having patients discharged in unbelievable short times, and is sending them home with very complex care needs. As a result, the cost of providing the needed home care has gone up. It had to. The patients need more care. Even where convalescent care is considered essential, it is being contracted out to retirement homes who come under the jurisdiction of the Landlord and Tenant Act rather than a licensed facility under the Long Term Care Act. The end result is that unlicensed personnel have become prime care givers.

However, despite severe budget cuts to hospitals that were already operating with outstanding efficiency, resources have not been reallocated to Community Care.

It appears that the Ministry of Health has established a funding competition between community care, long term care and hospital/doctor care. Rather than taking a unified budget and resource allocation approach, the Ministry maintains two different budget lines and two methods of determining resource allocations for health care. While proselytizing the need for an integrated and seamless program of health care delivery, the Ministry of Health has failed to develop an integrated and seamless system for resource allocation at the Ministry level.

4.5 Entitlement to Basic Health Care Services

We are witnessing a dramatic shift in health care delivery. It is important to note that complex care such as I.V.s, antibiotic therapy and pain management have shifted from the hospital setting to the home setting. These are not controversial alternate therapies or luxuries. They are the most basic of medical care. It is alarming to note that these services, once an entitlement when provided in hospital, seem now to be a privilege when provided in the community. The government relies on a provision of the Long Term Care Act, introduced by the previous NDP government which removed the absolute entitlement to home care services.

It seems incongruous that the government should so strongly promote a philosophy of health care in the community without providing protection of the right to receive this care.

We ask that you immediately amend the Long Term Care Act to include essential home health care procedures as entitled services.

SUMMARY AND RECOMMENDATIONS

Homemaking and personal care services are important and integral components of home health care. Cutting these services hurts patients and their families, puts a strain on community resources and creates hardship for the home care workers who lose their jobs. The KFL&A CCAC projected budget shortfall is due to the dramatic growth of real health care needs in the community. These needs arise from changes to our hospital system, unique characteristics of our community and the fact that the KFL&A region is succeeding in achieving an integrated health care delivery system with strong emphasis on community care.

1. We urge you to fund the KFL&A CCAC shortfall for the 1998/99 fiscal year in order that frail and ill people not lose important health care services while the current situation is reviewed.

2. A per capita funding formula does not adequately address health care needs. The policy covering resource allocations to CCAC's must be amended to ensure that underfunding does not compromise public health. To this end we recommend that a weighting formula be developed in order that unique local circumstances can be addressed in deciding resource allocations to individual districts. We suggest that the formula include, but not be limited to:
   • severity and complexity of patient needs using a model similar to that used by the hospitals;
   • demographics of the region:
   • availability of and burden on family caregivers;
   • costs of case management / discharge planning for patients living outside of the CCAC district.

3. In light of a widely held health care philosophy that it is better to care for patients in the home than in the hospital, where-ever possible, that you table legislation to amend the Long Term Care Act of Ontario to reinstate home care as an entitled health care service.

4. This government petition the federal government to amend the Canada Health Act to include home care in its provisions.

ATTACHMENT 1

INTRODUCTION:

The following are just a few of the personal stories of people in our community who are being affected by the shift from hospital care to home care and the shortage of long-term care beds.

Case 1:

On Friday morning, October 16, 1998, a 76 year old widow, who is normally in excellent health and who lives alone, was taken to Kingston General Hospital Emergency by ambulance. She was suffering from nausea, severe headache, sweating and imbalance. She believes she was examined for the possibility of stroke and that it was determined that this was not the case.

She was released from the Emergency Department without a definitive diagnosis and advised to contact her family doctor. Since she was unable to stand without support, she returned home by ambulance. Although she was elderly, very sick and living alone, she was not admitted to hospital.

It is our contention that due to the CCAC waiting list for homecare, she was not referred to the discharge planner at the hospital nor was she aware that she could request assistance from CCAC directly.

Due to nausea it was two days before she was able to take clear soup and a few more days until she was able to call Chicken Chalet for some prepared food. It is now believed that she had a severe reaction to the flu shot she had taken earlier in the week.

Due to the shortage of hospital beds and the waiting list for homecare, this 76 year old women who lives alone was placed at considerable risk.

Case 2:

Both the husband and wife have heart conditions and the wife has recently recovered from an operation for breast cancer.

The family was assessed by the CCAC and it was determined that their daughter required the provision of personal care and the parents required respite assistance.

The daughter is unable to move without assistance. She suffers from both constant pain and nausea. She is not able to sleep throughout the night without being turned several times by a caregiver.

The family have been advised that since there are two live-in family members to provide caregiving, the CCAC service will be discontinued as of November 1, 1998. They have no alternative but to place their daughter in an institution. The daughter is now on a waiting list for long term care. Currently there are 411 people on this list in the Kingston Frontenac Lennox and Addington area.

They wonder if they will both die before she is admitted.

Case 3:

After a short stay in hospital following a severe stroke, he was sent home in the care of his elderly wife who is a registered nurse. Although professionally trained, the lifting and constant care is beginning to show on his spouse who is in her early seventies. She is now suffering from exhaustion and depression.

Although they met the criteria for both personal care and respite services, they are still on a waiting list.

Case 4:

Although blind, this woman is in good health, feisty and independent. With the help of a minimum amount of homemaking service, she has been able to live in her own apartment and maintain her lifestyle. She has been advised that homemaking will not be available to her after October 31, 1998.

Since she is not financially able to hire a homemaking service, she has no alternative but to add her name to the list of 411 people waiting for a placement in a long term care facility.

She is worried about how she will manage in the meantime. She is fearful about accepting volunteer service since she cannot see what they are doing while in her home.

ATTACHMENT 2

Source:	National Home Care Survey
	College of Family Physicians of Canada
	October 1998

Question:	In your opinion, what are the most significant factors that have influenced/impacted upon the need for home care services for your own patients?
Response:	Family physicians responding to the survey identified aging population and earlier discharge from hospital as the two most significant factors impacting the need for home care services. It should be noted that hospital-related factors resulting from national restructuring initiatives were in fact seen as the dominant factor relating to increase home care demand. 55.6% of the respondents ranked either "earlier discharge from hospital" or "hospital closures/downsizing as the number one factor.
Question:	Following most hospital stays, compared to five years ago, at the time of hospital discharge, are your patients now going home: in the same condition as in the past; sicker than in the past; in better condition than in the past?
Response:	Nationally, a large majority of the respondents, 74.6%, indicated that their patients are sicker than in the past at time of discharge from hospital.
Question:	For your own patients, do you consider the risk for an adverse medical outcome as a result of early discharge to be: decreased, unchanged,increased, not applicable to my practice?
Response:	49.9% of the national sample said that they considered their patients at increased risk for an adverse medical outcome as a result of early discharge; none felt they were at a decreased risk; 17.6% stated it was not applicable to their practice and only 7.7% said the risk was unchanged.
Question:	In comparison to the situation five years ago, have the number of active medical treatments (IVs, feeding tubes, special medications, etc.) required at home by your own patients decreased, remained the same or increased?
Response:	75.8% of the doctors responding to the survey nationally reported that the number of active medical treatments required at home by their own patients has increased compared to five years ago.
Question:	In your opinion, should home care be made an integral part of our health care system? (i.e. should all medically necessary services delivered in the home be publicly funded?)
Response:	Expressing widespread support, 87% of the doctors responding to the survey feel that all medically necessary services delivered in the home should be publicly funded and that in the future, home care must be viewed as an integral part of the national health care system.
Question:	In your opinion, are governments shifting the burden and costs (costs, care-giving responsibilities) once carried by the public system to individuals and their families?
Response:	83.1% of the respondents believe the governments are shifting the burden of costs previously carried by the public system onto individuals and their families.