The notes in this report have been complied through the documentation and experience of 57 women that formally participated in either a focus group or town hall meeting. These groups met in the following areas: Huntsville, Muskoka, Toronto, North York, Durham Region, North Bay, and Brampton. The focus groups were made up of a diverse population of women including Korean, Portuguese, Vietnamese, East Indian, and Native women. Women from both rural and urban areas, middle class to low income and young to elderly participated in these various discussions.

1. Identify critical issues in women’s health care access using the following headings: homecare, hospital care, long term care, emergency care, respite care, assistive devices, and mental health.
2. How does shortened length of stay in hospital affect the group’s/organization’s members?
3. How are women affected by shortened length of stay in hospitals?
4. What does health care privatization mean for women?
5. How has staff deregulation in long-term care affected women?
6. What does the reorganization of health services mean for women?

a) What are women paying for out-of-pocket that they have not in the past?

b) Where are they getting the funds to pay for these added expenses?

Interconnectedness of Issues: Health and Access

a) How have changes to social infrastructure impacted women’s health?

b) How have changes to social infrastructure impacted women’s access to health care?

a) Have environmental changes impacted women’s health?

b) If so, are there services in place to deal with these changes?

a) How have changes to social services impacted women’s health?

b) How have changes to these social services impacted women’s access to health care?

Participation and Control of Decision Making Process

1. Describe the involvement of women in decisions that affect their personal health.
2. How involved are you or your clients in health care decision-making at the policy level?
3. What limits women’s control over decision-making at a personal level?
4. What limits women’s control over decision-making at an institutional or governmental level?

Key Trends

Listed below are key trends that were noticed within each of the focus groups:

• Accessibility is an issue for all women.
• Accessibility is very limited for marginalized women and those with language barriers.
• There’s a shift towards unpaid care-family and friends are the caregivers along with volunteers.
• Preventative care is difficult to access.
• Health promotion is almost non-existent.
• Emergency care is difficult to access.
• Homecare is difficult to access.
• Community care agencies and staff are stretched beyond their limits.
• Long-term care is difficult to access.
• Long-term care facilities are having major problems due to lack of minimum health care standards.
• Caregivers are having difficulty accessing respite services.
• Mental health care is difficult to access, especially for non-emergency situations, young women, marginalized and ethno-cultural women.
• There are more out-of-pocket expenses making the health care system especially preventative care very inaccessible.
• Cuts have meant privatization through delisting and shifting the burden of care to unpaid family, friends and volunteers and the removal of access to care.
• Women are seeing the download pressure on wages and working conditions through the introduction of competitive bidding and for-profit corporations in homecare.
• There is no continuum of care from hospital to community or long term care.
• There is no continuum of care across health and social service institutions.
• Women identify a need for advocates at almost every level as they find the system difficult to navigate.
• It’s difficult to access assistive devices.
• Environmental determinants of health are worsening and the government is not dealing with this issue.
• There are major barriers faced by women around participating in the decision making and policy-making actions regarding health care.

Response from Women’s Focus Groups:

1. Identify critical issues in women’s health care access using the following headings:

Home care:

Muskoka & Huntsville Groups

• Women force themselves to do activities that actually make them sicker and weaker at which time they call upon female friends and relatives to assist them. This is stressful to both the ill woman who feel’s guilty for asking for help and to the friend or relative who now has an added chore in her day and will feel guilty if she says she cannot help. This is another example of working for no pay.
• Homecare assessments are not being done in a timely fashion because of waiting lists for assessment-by the time assessments are provided the clients are more dependent on care givers because they haven't been given the proper equipment-a walker, wheelchair or tub seat-to do their own care. They become weaker and more dependent.
• Reduced homecare services cause decreased physical status and more dependency on the care provider in the home. More hours of home care service are being offered at cost, benefiting the private service, which increases the financial stress on women.
• Freezing of Community Care Access Centre budgets caused a decrease of service hours resulting in a decrease of care.
• Women at home who are the caregiver are not being paid for the services they provide and have no benefits. Sometimes they are forced to give up the possibility of a job to care for sick, often elderly family members.
• There are more elderly women than men that need health care services. Several participants described women's services being cut or not given but when a man in the same situation needs the same service-the man gets the service first and/or longer.
• More of the burden of care is being shifted to unpaid caregivers and volunteers who are mainly women.

Korean Group

• Case-A woman with 2 broken wrists was asked if there was anyone at home to care for her and she said no. Homecare was arranged and delivered by a non-Asian homemaker where language for her was not an issue but the food prepared was. Food that the homemaker wanted to prepare was not Korean and she could not eat for days. Women friends eventually helped her with meals - she felt guilty for having homecare and friends help her. She eventually went to relatives in another community when she was well enough to travel to receive home care (4-6 weeks) 14 hours per week. There was no one to get groceries for her so she had ask for someone from homecare to shop for her which she felt guilty about, but was told she could not ask for that type of assistance from homecare.

Toronto Area Groups-Toronto, Durham & Brampton

• There are many issues in large cities like Toronto. Many women use shelters and after discharge find they have to return due to lack of support services available to them in the community. It’s reported that no homecare plan in place for these women. Paperwork normally done by family is not being done at all therefore care is not received. When these homeless women are discharged to the streets there is no follow-up. Anyone that is marginalized i.e. mental health problems, financial hardships, or are homeless, will have a hard time advocating and navigating through the system therefore frequently they receive no care. Low income, mental health, addiction and language barriers all have devastating impacts on access to health care.
• Individuals that are chronically ill, last year received 5-6 hours of home care now receive 1-2 hours per week because of cut backs in the home care program and the competitive bidding process. Competitive bidding and privatization of home care is leading to the "ghettoization" of home care. The primarily women employees of these agencies are receiving less pay per hour and no benefits. Women workers are seeing full time unionized jobs become part time non unionized therefore they are receiving no benefits and women must work 2 or more jobs to maintain a living wage. If possible these women seek more secure employment thus taking the experienced staff out of the system. We see the profits going into private companies and the burden of care falling on volunteers-unpaid family and friends. If there are no family or friends the burden often falls on already overworked shelter workers.
• Frequent changes in caregivers are hard on the elderly, and mental health patients. It confuses and upsets them often increasing their problems. Community Care Access Centre workers may refuse patients; patients may not refuse caregivers.
• As stated previously we are told homelessness increases the vulnerability of these women. There are frequently mental health issues in some form or another and through the Community Care Access Centre we now see a woman with 5 problems and each problem requires a different worker-thus raising the cost-and there is no communication between workers and duplication of service often happens resulting in stress of the patient increasing! Therefore increasing the severity of the disorder.
• Solution: Care providers would like to see a patient advocate program in health care. A group of publicly chosen individuals to over see the system. They would also like to see one public system that coordinates all forms of public health providers and not private profiteers.
• Reporting is not done well when various and numerous caregivers are allocated to one patient. A Durham Region resident tells us that her packing was not totally removed and began to "stink" at which time she questioned the staff to check her records where they discovered one caregiver had not removed all the packing and that was when the problem began.
• Home care is denied to patients who’s status becomes terminal. Care is then to be done by family or hospice care.
• Care providers are being asked to do housework not nursing care.

Portuguese and Vietnamese Group

• Community Care Access Centre determines a particular client’s needs and community agencies are asked to provide the services to suit the client’s need. There are concerns about how hours are awarded. A client that had some home support and comfortable income, continually phoned in that she needed more care. The workers thought that they were there more for housekeeping than patient care and didn’t think any extra time was necessary, but she received more hours. Another client that the staff knew needed more home care hours was not given the hours. This woman was poor, and had a language barrier. The staff tried to advocate for her but were not successful in helping her receive more hours of homecare. The final outcome to this case was the comfortable patient was given 15 hours per week and the patient with the most needs had her hours divided into 1 hour per visit twice a week instead of 2 hours once per week.

• Health care workers identify Toronto as a heavy need area. Women see caregivers in the home comprised of 80-90% women. Some feel if the caregiver in the home is male they see more hours being allotted. Community Care Access Centre is asking where are the family members and where are the daughters. There is a perception that males are more generous with the hours and more receptive to requests of the staff, whereas females ask more questions and are not as open to suggestions of the workers. Coordinators with a nursing background tend to look at clients medical needs and not the whole picture. Coordinators with a social service background look at the big picture (i.e. socio-economic, spiritual and mental needs).
• Some volunteers have had so many added duties that many of them have quit. Some responsibilities now include translation for doctor’s appointments, escorting patients to doctor’s appointments (that use to be a part of the paid staff’s job description) Translation is a huge concern for these volunteers and for the workers as mistranslation could be very serious.
• One very disturbing incident was described in the following manner-a mom with no Canadian status took her 2 year old seizuring son to a hospital emergency room department in Toronto and was denied treatment because she had no health card and the child who was born in Canada had no health card because he had fallen through the cracks. Monday morning the woman and child arrived at a community agency and were taken with an advocate worker to a local Health Care Centre where the child was treated.

Hospital Care

Muskoka & Huntsville Groups

• The phrase that sums up discharge from hospitals "Sicker and Quicker" seems to be a new trend.
• Women get sent home to return to their household daily chores without support. They return to care for children, household duties, and anyone else in the house that they were previously responsible for. They are also returning to work sooner.
• Patients use to have pre and post operation teaching done in hospital. Due to a decrease in nursing staff-now this teaching is not being done and patients are going home without it and family caring for the patient do not have adequate instructions to care for the patient.
• New moms go home sooner with no community support in place-we see more jaundice babies returning to hospital. New moms are feeling inadequate and insecure. This lack of support could also lead to child abuse, as these moms have nowhere to seek help.
• One woman tells us women have less by-pass surgery than men and there has been a decrease in sub-acute beds when the Health Service Restructuring Commission reported that we needed more.
• Wives, daughters and mothers are delivering more complex care at home.
• Families of patients in hospital are being told on a daily basis to come in to feed, bath and change patients, as the staffing is limited. The elderly are especially at risk of being left as their conditions may be unstable awaiting nursing home beds but they are unable to feed and toilet themselves. This impacts women as they use the health care system more than men and caregivers are primarily women.
• Shelters are taking women back from hospital-sicker and quicker-to their facilities with no support services in place to care for these women, often with children and no support to care for their children.
• Low-income single mothers are being discharged from hospital with no support systems set up to help with daycare and low income as they often work 2-3 part time jobs with no benefits. Often these women go back to work too soon and reoccurrence of the medical problem is high.
• Pap tests often have a 3-month wait for results; therefore easily treatable pre cancerous pap tests now have time to become cancerous.
• There’s a major shortage of General Practitioners, who are like gatekeepers to the specialists.
• Health care workers are noting more specialists in Toronto and other big cities but not in rural areas. Due to no travel grants there’s added out of pocket expenses for rural families who have to travel for health care.

Korean Group

• A woman that had 2 broken wrists was not hospitalized. She visited the emergency room and was told that hospitalization was not an option. She had to count on friends until homecare was started the next day.
• An elderly grandmother that was in the hospital with a language barrier was forced to take medication and did not know what she was taking. She was also quite physically forced to take the pills. Her family felt she was discharged from hospital too soon and they were not consulted about the discharge so no arrangements were made for the family to be home when she arrived there. The whole family is impacted by this situation as the elderly grandmother is no longer able to care for the grandchildren and the daughter is possibly going to lose full time employment, as she now has to stay home and be an unpaid caregiver. A complaint about the time gap from discharge from hospital to home care starting time was discussed. Female friends that are being asked to care for their female friends are feeling guilty that they cannot because their time is so limited already. There is no follow up from hospital or instructions given to family about how to care for family coming home from hospital, "sicker and quicker" at that.

Toronto Area Groups-Toronto, Durham & Brampton

• There is no say given to marginalized patients and no follow up.
• Hospitals will not find a shelter bed for homeless women. The hospitals now call street health nurses to find shelter beds. These women come to the shelter with a bag of medications and no instructions or follow-up care instructions. Shelters are not responsible for making sure that medication is taken.
• One woman was in a hospital emergency room with blood poisoning when she was told to go home and return at 2 am for her next intravenous medication. Through the intervention of a nurse in the emergency room department she was allowed to stay on a stretcher in the emergency room. She was finally admitted to a ward and she was not given meals during her stay and missed one dose of her intravenous medication and continually had to ask for water at her bedside. She also found her bathroom that was shared by 3 other women was constantly dirty. She was finally diagnosed with the flesh eating disease. She is a strong enough person to advocate on her own behave but feels anyone marginalized for whatever reason may not have faired as well as she did. Some women are fearful that a mental health homeless woman may have been sent back to the streets to die.
• One woman had the experience of an elderly father post stroke-both her mom and dad had blind faith in the doctors and whatever they said was never questioned. They did call their daughter to advocate for them. We find that already stressed family members, frequently the women are called upon to make decisions in an already stressful situation.
• Another woman had the experience of a mother with Alzheimer’s that was in the hospital and it was assumed by staff that because the daughter was in the hospital with her mother she would do the basic care for her mother.
• Many women that are homeless have no health card and are denied care. The shelter staff and street health nurses are often given the responsibility of the paperwork to get these women their health cards.
• Some women feel that women with HIV, Hepatitis C, drug dependencies and transgender patient being treated cruelly in the emergency room departments. They feel that there should be more education about transgendered people, HIV and drug abusers in these urban facilities and more compassion when caring for these patients.
• Some women believe there is no preventative care for women as pap smears are only covered once every 2 years and breast screening once a year. Preventative drugs are not covered either-something as simple as a multivitamin for homeless and elderly women or calcium for women with osteoporosis, which so many women over 45 are susceptible to, are not covered.
• One woman is frustrated that hospitals are now in the business of money making by having private food courts in the hospital. She remembers when the hospital offered pharmacy service-convenient and no dispensing fee. Once again the private sector makes money off the sick, elderly and women. The government directive that hospitals become more self-sufficient and have a no deficit budget has encouraged these situations.
• Waiting lists are so long that a patient waiting for a valve replacement wanted to have a "heart event" happen so she would be moved up the list.
• Families are noted as using vacation time to care for their elderly parents.
• One homecare worker was laughed at in the emergency room department when an Alzheimer’s patient was found walking on the 401 highway and the worker asked to have the patient admitted, as there was no supervision at home. They were told to "wait in line".
• An acute care patient was pressured to go home with no support, and their first child. This scenario is a way of life in most general hospitals.
• One woman confessed to lying that there was no one at home so her discharge from the hospital would be delayed and that more homecare hours would be provided.

Portuguese and Vietnamese Group

• Focus group participants noted that in the emergency room the loudest talkers get the beds and the frail elderly with no one to advocate for them get sent home.
• Mental illness patients get sent home because some believe that hospitals cannot deal with trying to arrange follow up care. Hospitals are slow at referring patients to the proper care needed. Home care assessments are not done because assessors are not multilingual therefore it is hard for them to communicate with patients.
• A woman shares with us that when she was a patient she was translating for the other women in the room to the nurses and the doctors. She felt tired at times and did not want to do this but felt obligated. She also saw janitors being used as translators.

Long Term Care

Muskoka & Huntsville Groups

• One woman tells us of a friend in a small privately owned nursing home that was bought by a large conglomerate nursing home-the home saw a decrease in supplies. Equipment was not maintained. Her friend a nurse in the home injured her back because a non-maintained lift broke. She lost her job and had to re-train at a cost to herself to continue to earn a living. Over the course of these stressful events she lost her job, her husband and is now a single mom. She is no longer nursing but does support herself and family.
• We see more high risk feeders says a worker who was hired to assess the feeding needs at a long term care facility-"they hired me to do an assessment for their insurance coverage-but as I watch the staff ratio to patient I know there is no way that my recommendations will ever be met."
• There are less staff with the elimination of the 2.5 funding formula and we are now seeing women caregivers burning out at a high rate because through no fault of their own they are unable to give adequate care-long waiting lists of residents to be fed and toileted. Heavier resident care with fewer staff pose health problems to the caregiver. Some women have complained of seeing inhumane treatment of residents because of the lack of staff and supplies. Pressure sores are present where none were before and not only are they present they are acceptable. In this acceptance the cost of treatment, time for treatment and stress on the caregiver all increases.
• Placement into long term care requires 3 choices of a home-one should be a "short list" facility-these usually mean undesirable homes for a number of reasons-from old dark facilities with small rooms to distance issues. Once admitted to a short list facility you may then move to a bed in your first choice home, if one comes available, but keep in mind moves of any kind are hard on the elderly.
• We see closures of chronic care hospitals with no building of publicly funded homes to accommodate the overflow of displaced elderly women.
• Because of the shorter length of stay in hospitals-there is increased acuity of residents returning to the home and no staff increases to deal with the increase in acuity residents.
• Due to deregulation of staff-less regulated staff are caring for the increased acuity residents. Often dietary and housekeeping staff, are giving hands on care because of workload issues.
• Resident’s left on toilets for extended periods of time because of staff shortage leads to falls of unsupervised elderly women moving themselves. Broken hips and head injuries, which then require more hospitalization, which is costly and could have been avoided with adequate staffing levels.
• These predominantly women with minimum education receive a wage rate of between $14.00 to $18.00 per hour. Not enough to support a family.

Korean Group

• One nursing home has a large Korean/Asian population but no staff that can communicate with the residents. Staff have asked for more multilingual staff to be hired to suit the needs of the patients but not received results. Some women have taken personal support worker training in Korean but still there are no staff that speak it fluently. This group would like to see a long-term care advocate group to lobby for multilingual and multicultural staff to be hired. Often in institutions the food is not what these elderly residents are used to eating and they just don’t eat.

Toronto Area Groups-Toronto, Durham & Brampton

• Waiting lists are the number one concern in Metro. The 2 best practice long-term care facilities-Baycrest and Ye Hong have a waiting list of 6 years. The new government regulation is that you no longer have 3 choices you have one choice and 3 days to take the placement or pass. If you pass your name comes off the list for one year, and then you go back to the bottom of the list.
• The newest government directive is a user fee increase over a 3-year period of 15 %.
• A woman was told by a rural nursing home that she should keep her mother in the rural area even if it was a hardship on the family because "the caregivers in the city (Toronto) are all ethnic and don't give good care."
• We are told that assault is an issue in the Alzheimer’s wards when new patients come to the area. The feeling is that there is not enough experienced staff, to supervise these high care patients.
• One woman suggests that a group home model of long-term care may be better for the patients as many of her aging friends have expressed a great dislike for being "warehoused". She expressed that bathing and dressing should be a priority and private procedure not hosing down as we frequently see in long-term care settings-due to lack of adequate staffing levels.
• Health care workers are concern that elderly homeless women are discharged from hospitals back to shelters when they should be going to long-term care facilities. When they return they must often be kept on the main floor because they are too frail to climb stairs and the ground floor is where the more violent mental or high priority homeless are roomed-these frail elderly women are then more susceptible to assault by the mental health high priority residents. Women are asking who is responsible for filling out the long-term care paper work for these women who have no families to care for them?
• Workload issues are a major concern in-1 personal support worker and 1 registered practical nurse for a 40-bed floor is not adequate.
• A woman tells us of her elderly mother that was in a long-term care facility. She fell and hit her head, and the large amount of blood that leaked to the floor due to the injury was dry by the time she was picked up by family coming to visit. She attributes this to a lack of staff.

Portuguese and Vietnamese Group

• Complaints that there is a shortage of Vietnamese-speaking workers in long-term care facilities. Senior women tend to put off admission to stay home longer. Food is also an issue, new admits do not eat and expect family to bring food in for them.
• Accreditation of long-term care institutions is perceived as a big lie. We see walls being painted and things brought up to code just before accreditation of facilities.
• Facilities are saying they have multilingual staff when in fact there are very few Portuguese-speaking employees. The whole system of accreditation needs to be assessed.
• Chinese speaking seniors mostly apply to Ye Hong and Mong Sheong Nsg homes-we believe there are huge waiting lists to get a room and bed, families are seen to have great stress while waiting for these beds.

Emergency Care

Muskoka & Huntsville Groups

• Long waits, and redirects.
• Redirects leave patients often-frail elderly women for suturing to pneumonia in a facility that their general practitioner does not have privileges at and family has no access to the facility without hardship because of distance.
• Elderly women in the emergency room for assessment can and do get sent home by taxi at any hour of the day or night-with or without family members or agency knowing about the transfer home.
• Marginalized communities end up in emergency rooms because no general practitioners are available.
• Relocated women from abusive environments use emergency room departments because no general practitioners are available.
• Nurse practitioners are under utilized because general practitioners don't want to give up their piece of the pie and there are no guidelines in place for billing of these nurse practitioners.
• We have Telehealth-no hands on care-this service gives people "permission" to go to the emergency room department. Telehealth does notify the emergency room that you are coming and does notify your general practitioner if you have one.

Korean Group

• One woman had to wait in an emergency room for 8 hours with atrial fibrillation and was very frightened-she has no language barrier but states she can only imagine how frightened someone who could not speak English would have been. Some of these women have no status in Canada and receive no health care whatsoever.

Toronto Area Groups-Toronto, Durham & Brampton

• Some street nurses say there is not enough education given to emergency room health care providers on the issues of HIV, Hepatitis C, and transgender issues. A transgender patient in the emergency room department is asked to have a vaginal exam after being sexually assaulted and does not have a vagina. Often staff lacks compassion and professionalism when dealing with transgendered patients.
• One Durham region resident had a miscarriage in the emergency waiting room while experiencing extreme pain and bleeding.
• There are complaints in Durham region about the lack of family doctors and therefore over use of the emergency room department.
• Medical doctors refuse elderly couples because they are assumed to be too much work.

Portuguese and Vietnamese Group

• Walk-in clinics are closing therefore increasing the number of people going to the emergency room. Toronto Western closed their walk-in clinic. 

Respite Care

Muskoka & Huntsville Groups

• Alzheimer's patients have had their home care decrease and the caregiver in the home often the wife or daughters have had more responsibility shifted to them.
• The respite care is therefore needed more often to keep caregivers healthy. Adult day programs have been cut as well.
• The respite beds must be booked in advance, that is no good for emergency situations. We are told that cost associated to these beds is $29.90 per day.
• Private care can start at $200.00 per day. Often fixed income retired women have extreme financial burden due to health care.
• There is no respite care for women in abusive situations. Their alternative is to live in shelters. Native women's community service tells us of a Native woman going to an abortion clinic in Toronto with 3 toddlers and no one to care for the children while she was in the clinic. She had to burden a friend from Mississauga to take the children for the day.
• No respite for women coming home from major surgery. They are still required to tend to childcare and any other duties in the house unless paid for privately.

Korean Group

• This group of women has seen no support. They have seen a woman lose her full time job to stay home and care for her elderly ill mother. Also educational programs are not provided for family who care for these patients-more unpaid health care being provided in the home.

Toronto Area Groups-Toronto, Durham & Brampton

• We have seen a decrease in funding. More women are caring for their husbands especially elderly. Therefore women need extended respite support, 3 weeks not 1 hour per week to do grocery shopping, etc.
• A woman from Durham region quit university to care for her mother that was in a motor vehicle collision and was sent home from an extended hospital stay. The family was told she could have 30 days of respite and that they could be all at once or spread out over a period of time. After those days were used up the mother was still not well and the family was totally responsible for her 24-hour care. One son did very little; the husband was too distraught to help out leaving the daughter with the responsible for the majority of care.

       Portuguese and Vietnamese Group

• In-home caregivers have an increased demand for respite care as home care hour’s decrease. The maximum respite home care in one week is 15 hours. Usually respite care is private at $22.00 per hour. Respite care workers are primarily female and receive a low rate of pay by the private agency.

Assistive Devices

Muskoka & Huntsville Groups

• Community Care Access Centre budgets no longer can give interim assistive devices (i.e. walkers, wheelchairs, etc.).
• A shelter needed a wheelchair for a woman with a broken leg and a worker at the shelter had to personally sign for the wheelchair-not even as a shelter staff but as being personally responsible for the wheelchair.
• "Assessment" for home care has huge waiting lists and people needing possibly only a walker when discharged are not receiving supplies in a timely fashion. By the time the assessment is done patients may have

1. injured the woman care giver
2. may now need a wheelchair instead of a walker because of increased debility-not using his or her leg muscles because no walker was available to walk with-increased atrophy.

• There are more out of pocket expenses to purchase hearing aids, crutches, glucometers and strip tests.
• Hearing Interpreter charges start at a minimum of 2 hours per session at $50.00 per hour. A Native Counseling Service needed to hire an interpreter to assist in assessment of a pregnant abused woman seeking an abortion and there was no money allotted for this service. They had to take money from elsewhere in their budget and still did not have enough hours allotted to have an in-depth assessment done.
• Health Care workers are seeing an increase in diabetes among Aboriginal women who do not have the money to purchase glucometers which start at $130.00 and test strips of $1.00 per use-therefore they go without testing their blood sugar levels or will only test once per day instead of 3 times per day-then have to be admitted to emergency department in crisis situation due to lack of money for preventative measures.
• Some communities have a recycle program for wheelchairs, walkers, etc. but home care often does not refer clients to this program and there is no funding to maintain these devices.
• Communication devices obtained through Assistive Device Program (ADP)-the government has reduced the number of agencies being able to supply these devices-reduced access, and waiting lists are months before obtaining devices. There is an increased hardship for women caregivers in either understanding the client or being the client not able to understand.
• Hearing aids-Assistive Device Program (ADP) assessments are paid for but the device must be purchased privately or through an insurance plan. Children need hearing aids replaced more often than adults because of growth-this increase means more out-of-pocket expense. For the elderly, without hearing aids they miss doorbells and miss meals on wheels and other services that may be provided to them. Alert devices for people that are hearing impaired are expensive ($500.00) and are used to hear doorbells, a ringing phone, crying baby, etc. These are not publicly provided but can be obtained through private purchase or insurance plans.

Toronto Area Groups-Toronto, Durham & Brampton

• Toronto women see many marginalized women that cannot afford assistive devices-hearing aids, and glasses, so they go without. They also find navigating the system too hard, making the Assistive Device Program inaccessible. Another place where an advocacy program should be in place.
• Glucometers are being supplied but no blood dipsticks, which cost $1.00 per stick. 1-4 sticks are usually needed per day. These blood test are not being done and admits to emergency rooms are more frequent.
• Wheel Trans cut backs make appointments inaccessible for clients. There is a 5- minute waiting period and if a client does not arrive the Wheel Trans leaves. In one case, a client was literally wheeled from the waiting room into the bus by the driver and she was not finished with her appointment.
• Wheel Trans drivers have huge lists and there are weekly reports of some of them becoming very nasty with the clients they serve.
• A woman that uses a wheelchair in Durham states one wheelchair is supplied every 5 years but 25% is paid every 2 years-this very active wheelchair patient states she wears out her chair because she is so active but that does not matter-she asked the Assistive Device Program worker " how many pairs of running shoes the woman wore out each year-comparing shoes to her wheelchair-imagine one pair of runners every 5 years for an active woman. This same woman is not entitled to a scooter, does not have one and she is a government employee.

  Portuguese and Vietnamese Group

• There are long waiting lists for assessments for assistive devices. One woman stated, " If you speak English you get service faster because they do not have multilingual workers. It is easier to get assistance for children than for seniors." Another woman tells us she has never had a problem getting any devices for her challenged child but she also sees and hears of how hard it is to get these Assistive Device Programs for elders that require wheelchairs or hearing aids.

Mental Health

Muskoka & Huntsville Groups

• Lists consist of a 6-8 month wait for assessment and no beds if one is needed.
• Muskoka notes an increase in 14 & 15 year olds in crisis-they don’t meet the criteria therefore gaps are occurring. These youths are eligible for youth counseling-but there is none available.
• There’s an increase in severity of cases being seen because there is nothing in place for less priority counseling-decreased budgets-causing more gaps.
• Lack of specialists.
• Psychologists are available through private counseling-therefore leaving out low-income women that cannot afford the service.
• Ontario Disability Pension (ODSP) does not pay for psychological counseling only physical treatment.
• Assertive Community Training Teams (ACTT) are popping up in communities but are not frequently seen-these are group homes for individuals that are emotionally and mentally challenged.
• There is no home care if mental health is the primary diagnosis.
• One woman mentioned in the Medical model-women’s health issues are not recognized. Violence is a determinant of health but is not recognized.
• Post Partum Depression and premenstrual symptoms are not recognized for their seriousness in fact in many communities these are swept under the carpet as nonexistent and further marginalize women.
• Bipolar disorders, which involve violence, impact whole societies and are not being treated.

Korean Group

• There is no respite care for mental health patients unless there is a physical problem. A woman had to take her (beginning of dementia) mother to work with her, as there was no home care available for her mother after hospitalization. She brought her otherwise healthy mother to work with her and was frequently asked if this was her custom to care for her elderly mother-she told them no-there is no home care arrangements for her mother. She also states she is lucky that her board of directors where she works is understanding and let her bring her mother to work with her. This cannot happen for many women who work, as their place of employment would not allow it.

Toronto Area Groups-Toronto, Durham & Brampton

• Serious mental health is the only mental health that is addressed. Only those who are going to injure themselves or others are given assistance. Most of the clients the Metro street nurses and shelter workers see are not mentally ill enough to be given help.
• The Toronto group would like to see more promotion of health through the government. They would like to see more money put into getting services to abused women and elderly women.
• Durham region sees a decrease in mental health staff and an increase in patients abusing patients because of lack of staff supervision.
• Nurses are leaving the mental health facility because the rates of pay are so low.
• In Durham region there has been an increase in forensic beds (criminally insane) and a decrease of long term, senior beds. Some Alzheimer’s agencies get government funding through mental health care programs whereas some other Alzheimer agencies do not.

Portuguese and Vietnamese Group

• A mental health client that has a language barrier often gets no interpreter therefore is very hard to assess. Patients refuse medication and follow up treatment because there is no interpreter. Vietnamese clients have extremely long waits, they believe there is only one Vietnamese-speaking psychiatrist in Ontario and one Portuguese-speaking psychiatrist in Toronto.
• Therapy for victims of abuse is not covered under mental health only the counseling is covered not the follow up therapy. Even though this is an important part of the recovery process.
• There are no multilingual services available for young women and often the dynamics of the discussion changes with translation therefore assessment is not accurate.
• A senior mentally ill patient who’s family did not visit them was very withdrawn and frequently refused to eat, some find that with the help of a translator/cultural interpreter the patient improved and began to eat much better. This form of support is greatly needed to assist in the recovery process.
• Support between hospitals and social services is needed. Finding places for mental health clients would relieve the revolving door process that we are continually faced with today.

2. How does shortened length of stay in hospital affect the group’s/organization’s members?

• Patients are returning to shelters sooner and sicker after being in hospital. Staff are being asked to dispense medication, assist and care for ill women. There is increased stress on both the shelter workers and the other women residing in the shelter. The stress comes from decreased staff in the shelters and an increased level of care for the client. Volunteers are not covered by any liability insurance like professionals are therefore they are in a situation of being liable and also the shelter may be in a position of being held liable for clients.
• Home care providers are doing more in shorter times causing unsafe care levels and increased stress along with feelings of inadequacy not doing all that they would like to for the patient.
• Home care providers are giving care on their own time to make up for the decrease in time allotted by the agency.
• The care provider in the home has added stress and more work to do with benchmarking on hospital stays (i.e. 24 hours post partum stay, 24 hours for post-operation gall bladder and appendectomies) again home sicker and quicker.
• Women are taking time off to attend to these ill family members and the whole system suffers-effecting the workplace and quality of life of the employee.
• Unskilled women are left to deal with at home IV therapies, dressings etc.

3. How are women affected by shortened length of stay in Hospitals?

• Women are coming home sooner and physically not well enough to cope with the day-to-day routine of the household.
• Women can’t afford to stay in hospital because there are no support services in place at home (i.e. no child care, no one to help with household duties). Women that are poor can’t afford any of these private services.
• Some women are coming home to complicated stressful home situations. For example single mothers with no support.
• Because of all of these factors we see increased general practitioner visits and re admits to hospital often through the emergency room causing increased stress and increased healing times.
• HIV clients have no follow up and are given medication with no instruction. They are also only receiving 2-months worth of medication supply when they are suppose to be on a particular medication for 6 months. No support is given especially in abuse situations.
• Health care providers are seeing more women dying in hostels and shelters.

4. What does health care privatization mean for women?

• Women are already the poorest working sector. Privatization means less access to care and support services.
• Privatization means more of a two-tier system, where the rich get service and the poor don’t. Often the children pay because of the impact on the home life.
• Women working in health care see more and more casualization of their jobs and a decrease of full time employment therefore working 2-3 jobs with no benefits and often not unionized jobs.
• Women have to make more money to afford the added costs of health care. This is all part of the competition of "going rate" vs. "regulation"
• There is decreased quality of care with privatization. Funds are not accessible especially for people that are disadvantaged.

 5. How has staff deregulation in long-term care affected women?

• With the elimination of the 2.5 funding formula in long-term care facilities we see workers, predominantly women doing more work in a shift.
• We see more support workers doing more complex care and looking after more acute clients causing their stress level to increases, as they do not have the training to administer all the treatments and care needed. The agency does not cover these workers with insurance and the worker could be held liable in the case of litigation.
• There is a decreased morale in both the regulated and unregulated staff as they feel they are not giving proper care to patients.
• Staff in these institutions are very aware that Health Inspector visits are pre-arranged so all guidelines are met on the day of the inspection only.
• Loss of full time jobs have increased over the past 5 years with the loss of the 2.5 funding formula as the calculation for staffing ratios no longer has a formula.
• The system is more top heavy-management in place but there’s a decrease of front line caregivers.
• In Huntsville, we heard they do assessments of patients with swallowing impairments for liability coverage and that in fact the staffing levels they see will not accommodate the recommendations they are suggesting.
• Long-term care facilities are seeing a decrease of staff with an increase of profit for private owners. There are longer waits because patients are no longer the priority, profit is.

6. What does the reorganization of health services mean for women?

• Systems like Telehealth do not meet the needs of women they only give "permission" for people to seek health care.
• Increased workloads cause women caregivers to have higher patient ratio with increased acuity.
• There is decreased morale because workers feel they are not giving the amount of care that is required to patients. Benchmarks dictate what is being done for patients not the acuity of the patient, which is what is taught to care providers.
• There is a decreased quality of life and decreased quality given to families as these tired, stressed women are not coping and have not enough services in place to help them.
• Economic loss with the casualization of jobs resulting in more part time and less full time jobs with no sick time, no vacation, and increase of contract workers. These contract workers also have no sick time, vacation time, or seniority.
• Due to an increase in technology, we hear from our group participants that more computer use decreases the hands-on care they are giving. Cell phones make women more accessible therefore increase stress and decrease in free time.
• In the reorganizing/restructuring process of the health care system women’s health was not part of the discussion in amalgamations and downsizing.
• As Health care workers, women are making less and less wages.
• Philosophy of care, limits care and it is hard to question (i.e. transgender and HIV issues).
• Reorganization means more of a two-tier system. Less prevention (i.e. pap smears, breast exams, physicals, dermatologist, etc.).
• De-listing of sex reassignment surgery is no longer covered, this is an exhaustive process. There is not enough funding from Trillium fund or other funds available.

7. a) What are women paying for out-of-pocket that they were not paying for before?

• Diabetic devices, increased child care costs, respite care-for people that are responsible for caregiving, aero chambers for inhaled medications (i.e. asthma drugs) increased dispensing fees, syringes, doctors letters-for schools and workplace, sick notes, letters to specialists and Worker Safety Insurance Board which can range between $10.00 to $25.00 per letter, physicals for children, and epi-pens for allergies.
• Medication, prescription and non-prescription, eye care, dental care, home care, and mental health. With the casualization of women workers they no longer have benefits to cover the cost of these necessities.
• Whether home care is in place or not the client must provide their own syringes, medications, dressing supplies (gauze and tape). When visiting or using a hospital you are sent a list of supplies to bring with you such as Kleenex, feminine pads, diapers for new babies and admitted babies, soap, shampoo, etc.
• Calcium supplement medication is now purchased over the counter as more and more women have calcium deficiencies this is an added out-of-pocket expense.
• A pharmacist was complaining to a Korean woman about her prescription being for 6 months He wanted to give her a 2-month prescription because he would make a profit from the dispensing fee more frequently. She was unsure why he was upset with her and she felt guilty that he was upset. These women are finding that insurance companies are only paying for generic drugs not brand name and that pharmacies are substituting generic drugs for brand names drugs.

  b) Where are women getting the funds to pay for these added expenses?

• We are hearing from the focus groups that women are simply going without. Food, shelter and caring for children are the priorities for these poor to middle income earning, often single parent families. Welfare pays for birth control and tranquilizers-says one woman.
• We are told that Aboriginal diabetes is on the increase and these people are impacted by:

1. the women having to care for increasingly ill community members, who do not have the means to check, monitor and control their diabetes.
2. women with diabetes that are unable to monitor their own condition because of the cost of supplies and monitors, therefore these women are being seen through the emergency room department in diabetic crisis which is expensive for the system.

• Keep in mind families’ pay when mothers are ill, in more ways than monetary. There is a rippling effect when the women of the family are sick.
• If women have to pay for service they simply do not receive it.
• Workers notice an increase in theft and of families on social assistance.

Interconnectedness of Issues

Health and Access

1. a) How have changes to the social infrastructure impacted women’s health?

• Women that are homeless are homeless longer resulting in the development of long-term psychological and physical health problems because there is limited access to affordable housing.
• Determinants of health and decreased housing cause an increase in illness.
• Shelters are seeing longer stays, up to 6 months and a decrease in turnover of women in shelter’s as there is no affordable housing to get into.
• Money issue-it’s not worth working for minimum wage if you have to pay childcare, which is forcing single mothers to leave their children unsupervised. This also increases the burden and makes caring for children unaffordable, which can result in children being taken from their mother.
• There are no daycare services available unless paying privately.
• Rent control now is consuming 60% of women’s wages.
• Women’s needs often come last if there is money left over for them.
• Family is first and woman’s needs come second.
• Low wage earners feel daycare sucks up the income and children are left unattended, so why work?
• There is an increase in food bank usage.
• A concern mentioned was of women being cut-off economically and creating a sense of false economy. We are not doing as well as a country with our poor people as the government would like you to believe.
• Some women expressed an increase in shelter usage instead of permanent housing and again low turnover in shelters.

b) How have changes in social infrastructures impacted women’s access to health care?

• Extreme measures implemented after Sept. 11th regarding birth certificate applications and other identification that are the keys to accessing the system (like employment and health care, housing, bank accounts) have meant a decrease in access to services and opportunities for some.
• People that are homeless cannot get welfare, or medical care.
• Peterborough has the highest homeless rate per capita.
• Women come home earlier from hospital with no support in place.
• In the case of a controlling male counterpart’s, joint custody has decreased women’s control over children and given the male counterpart more access to manipulate the children.
• Fixed income of $1000.00 per month or less often seen in seniors cause social isolation and increased problems, often mental health and dietary problems.
• A woman notes senior men getting services quicker than women in her building; the assumption being made that women can cope and don’t need services.
• There’s an increase in women having heart attacks. No specific causative but general environmental issues could be attributed to this increase. Women need to voice their concerns.

2. a) Have environmental changes impacted women’s health?

• More illness because of environmental issues resulting in more stress, and work for women in a day.
• Health care workers are noting poor quality of breast milk being produced by new mothers.
• There’s been a Tuberculosis outbreak on farm in Bridgenorth.
• Because of pollution and industrial waste and water treatment - Ecoli outbreaks.
• There’s an increase in young women smoking.
• There’s an increase in asthma and severity of it. Children are not being treated properly. There’s not proper funding for aero chambers therefore medication is not as effective. Also the number of pediatricians in many rural areas is not adequate for the amount children needing treatment.
• Pesticide use is causing increase in breast cancer.
• Early onset of puberty from hormones in meat and the question of genetically altered foods are beginning to be a problem in many areas.
• There are an increased number of sick children, some of the cause may be related to increase in food bank use, causing obese children with more health problems than well nourished active children.

b) If so, are there services in place to deal with these changes?

• Any services in place are stretched beyond the limit.
• There is no movement of services to the community. They seem to be at a stand still.
• Asthma clinics have no pediatricians or respiratory technicians visiting them.
• There’s an increase of sexually transmitted diseases resulting in increased chances of cervical cancer and very little if any discussion regarding this issue by medical doctors.
• There are not enough general practitioners.
• There is a need for increased education and awareness on women’s health issues.
• There’s a major decrease in services through cuts seen in all community agencies.
• The government poorly address environmental issues.

3. a) How have changes to social services impacted women’s health?

• Some agencies we connected with have definitely noticed an increase in demand for services and have expanded to meet unmet needs that government ought to provide (i.e. heat alerts). An inadequate response by government has meant we must respond. The government assumes others will pick up where they have left off, once again increasing the workload and/or letting the work fall on unpaid hands.
• A decrease in regulated staff and unregulated staff is going into homes-possibly lengthening the healing process by missing complications that the trained eye may catch.
• There’s no adjustment for inflation-increased poverty means decreased health.
• A decreased staff and increased patient load is seen in all aspects of health care services.
• Back to work legislation has been harmful to women as they are obligated to go back to work even if conditions are not safe and wages stay the same.
• There’s an increase use of food banks, leading to obesity and diabetes.
• There’s no increase in government funding meaning women working in health care and connected services are stressed and stretched.
• There’s decreased services with decreased cuts to funding and program cuts (i.e. sexual assault through Children’s Aid Service has been cut altogether). The increase documentation required through regulation with decreased care and hands on services has led to feelings of inadequate care giving

b) How have changes to these social services impacted women’s access to health care?

• Women have to have an increased number of jobs to compensate for casualization-2 or more part time jobs to equal 1 full time job and there is no time to obtain services of health care.
• Travel time and costs-rural areas have to travel to Metro Toronto for services.
• Quantity-we are an aging society.
• Complexity-if you have an ill child and no support services and you are also trying to find services to care for the child (i.e. pediatrician, specialists, etc.) this all adds to women stress.
• The rich become richer and are not sympathetic to the economically poor of our society. Increased use of food banks equals increased obesity and diabetes therefore a sicker society.
• Counselors do more advocacy work and less hands-on counseling.
• All around caregivers have a sense of inadequacy as increased workload and inability to complete care. These workers are stressed as never before.

Participation and Control of Decision Making Process

1. Describe the involvement of women in decisions that affect their personal health.

Muskoka & Huntsville Groups

• Patriarchal system indicates that the medical doctor is god. Caregivers see clients being left out of the decision-making process and see medical doctors reluctant to give the client the chance to make decisions for themselves.
• Coercive treatment by medical doctors is regularly happening.
• Many women often-senior women are unaccustomed to decision-making and rely on the medical doctor to decide appropriate care for them.
• For long term care placement, client’s name is placed on 3 waiting lists and they are often asked to put their name on a "short wait" list facility. Then you are able to deny admission only 1 time and your name is totally removed from the list for 1 year. The client’s family feels guilty about having to make the decision for admission to extended care facilities at all.
• General practitioners are the gatekeepers to specialists.
• General practitioners are denying patient services if patients refuse to follow doctor’s suggestions or when alternative forms of treatment are undertaken by the client (i.e. homeopathic or naturopathic treatment).
• Historically in our society women have not been the decision-makers.
• Is there a difference between doctors treatment of men vs. women?
• Women should and could be educated to make decisions. Women need to be active participants in their treatment, care, alternatives, etc.
• Discharge from hospitals and other services and benchmarking are sending women home "sicker and quicker" to resume full family responsibilities.

Korean Group

• Some women are asking what the prescription drugs are for but more frequently they are just told what to do.
• Sometimes there is a communication barrier. Frequently individuals are told just to obey the doctor’s orders, but if they do not agree they may not receive proper care. Rarely do they seek other physicians or alternative help. If there is no drug plan or if individuals are on a fixed income, drugs are simply not purchased.
• If there is a recommendation for a dietary change it is rarely followed, because the woman prepare the food for the family and they don’t have time to prepare a special diet for themselves.
• Women complain about generally being rushed in the medical office, there is no consultation with them and they are given 2-3 minutes of the doctors’ time then brushed off.
• One woman signed consent for surgery form then changed her mind and decided not to have it. She was basically harassed about declining this surgery. She was very upset about the harassment. In this community there are many women "not landed" but visiting and caring for children, grandchildren, these women seek no health care, as they do not have coverage.
• Not enough information is given to women to make informed decisions about their care.

Toronto Area Groups-Toronto, Durham & Brampton

• Women seen through community agencies feel they have little or no say in their decision-making process affecting their personal health as they have so many problems and are so marginalized.

Portuguese and Vietnamese Group

• A participant tells us she had to stay in when she went home from hospital while she was receiving homecare and it was all doctor driven. This woman was sent a homecare worker that did not show up until she no longer required the service.

2. How involved are you or your clients in health care decision making at the policy level?

Korean Group

• Who will help-One woman volunteered to translate pamphlets and information sheets.
• We need to find out about Agincourt politicians to lobby with the Korean focus group participants.

Toronto Area Groups-Toronto, Durham & Brampton

• Alzheimer’s agencies notes that not many community members participate in lobbying for health policy reform or change. Network committees and Community Partners don’t welcome caregivers to the table. There is a stigma attached to caregivers sitting on the committee. Also caregivers are unable to attend these committees because there are no supports set up for them (i.e. childcare, respite care, etc.).
• Toronto group feels that activists do participate.
• Older women are involved at many levels (i.e. campaigns, committees, etc.).
• For poor women and women in shelters-priorities are not decision making but where they are going to live, how are they going to feed their children, etc.
• Students are working 2 or more jobs to pay rising tuition fees and policy decision-making is not their priority either.
• Seniors and people with disabilities lead the way in health care policy making. This is definitely been a priority for them.
• There are no government consultations.
• The media does not do a good job of informing community members of the decisions being made around health care policy.
• There’s a feeling that those involved will always be involved.
• There are not enough questions being asked of the decision-makers.
• Stressed and overburdened caregivers and the ill are not able to be involved because of circumstances-we see increased advocacy with illness.
• An Aboriginal transitional worker feels we need to support education for women and relieve the feelings of hopelessness, and start to encourage feelings of empowerment. Role modeling is a good tool. She also tells us that women are looking for tools to empower themselves.
• Street health agencies are actively involved in raising issues of patient care through community advisory panels.

Portuguese and Vietnamese Group

• Many senior women are quite active in the health coalitions campaigns because they have community development workers that assist them. They have done a street theater type demonstration.

3. What limits women’s control over decision making at a personal level?

• Education, lack of knowledge regarding rights, what they are entitled to, where do they go for help, and who can help them.
• Having to deal with male oriented professional mindsets.
• Often women can’t/don’t read the newspaper-for many different reasons.
• Social stigma-women are thought of as not as smart as men.
• In an abusive relationship making a decision may be a fatal mistake for a woman.
• Traditional conditioning to accept medical opinion?
• Hierarchy of needs.
• For women the priority to create policy is so far down their list that they will never get to it. Priorities are food and shelter for many women that these workers are involved with.

4. What limits women’s control over decision making at an institutional or governmental level?

• Educational background, fear, no opportunity.
• Not enough funds, and no time.
• Needs vs. wants.
• Societal views-women who stay at home are contributing to society-just because man maybe seen as making the policies does not mean they contribute more then women.
• Intimidating role-not traditionally a decision-making role for women.
• Taking over of Community Care Access Centre’s by the policy makers with no consultation by the people receiving the care or providing the care.
• Not enough women in policy and decision making capacities.
• Poor women focus on basic needs for the family (i.e. food and shelter).
• The policy makers do not apply the policies nor do they get input from the providers and receivers of the service.
• How do we get involved? Women are too busy and too tired to get involved. There’s not a lot of access to get involved.
• Bureaucracy and feelings of hopelessness get in the way.
• Health care users see English as a second language classes being cut so women don’t even have the means to speak and understand the predominate language of the health care system.
• Immigration laws require professionals entering the country to be fluent in English but multilingual professionals are so desperately needed.
• What women want to see is prevention and education-quality childcare programs, quality food access, quality lifestyle, affordable housing, and a healthy environment. Education also to cover disease prevention, and birth control. Women want more funding for health information and to make the information accessible recognizing all of these ideas are economically viable suggestions.
• They also note that women in power wear suits.
• Lack of education and English as a first language, limit women’s control over decision making at an institutional and governmental level.

Ontario Health Coalition
305-15 Gervais Drive
Toronto, Ontario
M3C 1Y8
Phone: 416-441-2505
Fax: 416-441-4073
ohc@sympatico.ca
www.ontariohealthcoalition.ca
Click here to return to the OHC Home Page.