OHC Accountability Handbook
Posted: May 15, 2003
(May 15, 2003)
This resource provides answers to frequent questions regarding access to medicines, programmes and health services.
Ontario Health Coalition
ACCESS TO MEDICATION *
I CANNOT AFFORD MY MEDICATION. WHAT CAN I DO? *
I CANNOT AFFORD THE DEDUCTIBLE I AM SUPPOSED TO PAY. WHAT CAN I DO? *
MY MEDICATION IS NOT AVAILABLE IN ONTARIO THROUGH ANY DRUG PROGRAM. WHAT CAN I DO? *
ACCESS TO TREATMENT *
MY TREATMENT IS NOT AVAILABLE IN ONTARIO THROUGH OHIP. WHAT CAN I DO? *
Services in Other Canadian Provinces and Territories: *
For Treatments Not Approved by OHIP: *
THE DOCTOR HAS RECOMMENDED THAT MY FATHER HAVE REGULAR PROSTATE SPECIFIC ANTIGEN (PSA) TESTS AND I HEARD HE MIGHT HAVE TO PAY FOR THESE TESTS. IS THIS TRUE? *
ACCESS TO EQUIPMENT *
I NEED A WHEELCHAIR FOR MY DISABLED HUSBAND. WHAT DO I DO? *
I CAN’T AFFORD THE 25% SHARE OF THE COST OF THE WHEELCHAIR I’M SUPPOSED TO PAY PLUS THE COST OF MODIFICATIONS. WHAT CAN I DO? *
MY MOTHER CANNOT AFFORD HER DIABETIC EQUIPMENT AND SUPPLIES. WHAT CAN SHE DO? *
ACCESS TO HOMECARE *
MY MOTHER WAS DEEMED NOT ELIGIBLE FOR HOMEMAKING SUPPORT THROUGH THE CCAC AND CANNOT LIVE ALONE WITHOUT THIS SUPPORT. WHAT CAN SHE DO? *
OTHER RESOURCES *
MY FATHER JUST HAD MAJOR SURGERY AND CANNOT LEAVE THE HOSPITAL UNTIL APPROPRIATE HOME AND NURSING SUPPORT ARE IN PLACE YET THE HOSPITAL IS PRESSURING TO DISCHARGE HIM WITHOUT THESE SUPPORTS. WHAT CAN HE DO? *
ACCESS TO CHRONIC CARE BEDS *
MY FATHER WAS TOLD BY THE HOSPITAL THAT HE HAD TO PAY FOR HIS HOSPITAL BED. IS THIS TRUE? *
ACCESS TO NURSING *
MY FATHER IS IN A HOSPITAL AND WE ARE UPSET WITH THE LEVEL OF CARE THE FACILITY PROVIDES. WE ARE TOLD THAT OUR ONLY “OPTION” IS TO PURCHASE EXTRA NURSING SUPPORT. IS THIS TRUE? *
MY FATHER IS IN A LONG TERM CARE FACILITY AND WE ARE UPSET WITH THE LEVEL OF CARE THE FACILITY PROVIDES. WE ARE TOLD THAT OUR ONLY “OPTION” IS TO PURCHASE EXTRA NURSING SUPPORT. IS THIS TRUE? *
MY FATHER IS IN RETIREMENT HOME AND WE ARE UPSET WITH THE LEVEL OF CARE THE FACILITY PROVIDES. WE ARE TOLD THAT OUR ONLY “OPTION” IS TO PURCHASE EXTRA NURSING SUPPORT. IS THIS TRUE? *
ACCESS TO ABORIGINAL HEALTH SERVICES *
THE DENTIST TREATING MY STATUS ABORIGINAL SON TOLD HIM HE HAD TO PAY CASH UP-FRONT FOR HIS TREATMENT. IS THIS TRUE? *
MY FATHER DIED SUDDENLY AFTER TREATMENT IN A HOSPITAL. WE FEEL HE RECEIVED INAPPROPRIATE CARE. WHAT ARE OUR OPTIONS? *
CIVIL SUIT *
AFTER SURGERY, I EXPERIENCED SEVERE COMPLICATIONS. I FEEL THIS WAS THE RESULT OF INCOMPETENCE ON THE PART OF THE DOCTOR. WHAT CAN I DO? *
HAVING PROBLEMS WITH AN ONTARIO GOVERNMENT SERVICE? *
POLICTICAL ADVOCACY *
IF NOTHING HAS WORKED, THEN WHAT? *
OTHER ADVOCACY RESOURCES *
Appendix A – Local Health Coalitions *
Appendix B – Ontario Community Information Centres *
Appendix C – Ontario Senior Citizen Health & Advocacy Organizations *
Appendix D – Psychiatric Patient Advocacy Offices of Ontario *
Appendix E – Provincial Health & Advocacy Organizations *
Appendix F – Ontario Members of Provincial Parliament *
Appendix G – Ontario Legal Clinics *
Appendix H – Ontario Family Councils *
Appendix I – Ontario Councils on Aging *
Appendix J – Ontario Community Health Centres *
Appendix K – Canadian Mental Health Association Ontario Branches *
Appendix L – Ontario Native Friendship Centres *
Appendix M – Ontarians with Disabilities Act Committee *
Over the years of 1999 and 2000, the Ontario Health Coalition conducted a comprehensive research project into the ways in which privatization and cuts to our public health system are affecting Ontarians. Called “Public Health, Private Wealth”, the project was a tremendous learning experience, and tremendously disturbing. In townhall meetings and health forums we met with hundreds of activists and community members across the province. We were overwhelmed as we started to get a picture of the tragic suffering and bitter frustration that have resulted from the provincial government’s policies of slashing our health services and our social infrastructure. From OHIP delisting to hospital bed cuts to privatized services and user fees, Ontarians are paying – literally – for over half a decade of and short-sighted and callous healthcare decision-making.
The Coalition has therefore undertaken the preparation of this Handbook as a Resource Manual, to encourage and assist those who need information and support in facing health problems, for themselves or those they take care of, for relatives, friends, neighbours and for the community. With this knowledge and the will to use it, we can better defend our rights and more effectively secure our health needs and our participation in Popular Advocacy and Community Action.
We, in turn, have asked one of our larger affiliated organizations, the Canadian Auto Workers’ union, to make a special contribution to the Coalition to help underwrite this project and we appreciate their positive response.
The Ontario Health Coalition is committed to working to ensure that health services are available to Ontarians – regardless of income – when we need them. With our more than 200 member organizations, we will continue to struggle to take back public control over public health care, to ensure that Medicare is more than just an insurance scheme covering catastrophic illness and injury, to ensure that public health care is once again built as an integral part of our social structure. We will continue to work for this because we believe, as most of you do, that Medicare is one of the most civilized and sensible ways of living together that Canadians have ever achieved. We hope you will join us in this most important endeavour.
Now we turn hopefully to the active local members of all our affiliates, and especially to those active in our Local Health Coalitions around the Province.
The Handbook is yours. Make use of it!
For the Ontario Health Coalition,
Irene Harris, Co Chair and Dan Benedict, Past Co-Chair
To put this handbook together, first we talked to major advocacy and non-profit organizations and identified the most common health advocacy questions that the people they work with face. We then researched what people can do in these situations.
What we found was that all-too-often the health services that people need are scattered, hard to find, or too costly for people to access. Often people must rely on charitable, non-profit organizations for services and support. But this is a very ad hoc system — these organizations are swamped with requests to help cover the costs of medications or treatments and appeals for other health-related supports. They cannot keep up with the demand. Even for those that are able to access the government programs, such as the Trillium Drug Program or the Assistive Devices program, there are many barriers to access. Often the services available fall horribly short of meeting people’s needs. Many people fall through the cracks. What happens if you cannot afford these services and supports? You go without. And many Ontarians are suffering the consequences of inadequate services. Finally, if you experience problems, the appeal and complaint processes are lengthy, difficult, and ineffective, with the result that many people just give up.
What does this mean for the health and well being of Ontarians? Health promotion professionals have long established that meeting lower level health needs prevents people from getting sicker and ultimately having a higher impact on health services resources and lower quality of life. Recent research on the impact of home making services for the elderly demonstrates this perfectly. Tragically, in Ontario, government policy is taking us in the opposite direction.
This Handbook is a tool for organizing in your community. I hope the information is useful.
Special thanks must go to Ethel Meade for her input and advise in putting this resource together.
We know through phone calls and inquiries from local health coalitions that there are many people across the province who cannot afford to buy their prescribed medications or can only do so with great difficulty.
Prior to 1996, seniors, people on Social Assistance and patients on Home Care paid no fees for medications.
In 1996, the Harris government passed Bill 26, the Omnibus Bill “An Act to Achieve Fiscal Savings and to Promote Economic Prosperity through Public Sector Restructuring, Streamlining, and Efficiency and to Implement Other Aspects of the Government’s Economic Agenda.” Bill 26, among many other problematic provisions:
- Introduced user fees and deductibles for seniors and social assistance recipients. Cabinet has the power to increase these user fees at any time.
- Gives the Minister of Health and Long Term Care unilateral power to determine which drugs will be added or deleted from the formulary (the approved list) for Ontario.
Ontario Drug Benefit (ODB) Program
The Ministry of Health and Long Term Care automatically registers all people who turn 65 into a database accessible by pharmacists so that they are eligible on the first day of the month after they turn 65. You must bring your Health card to the pharmacy. All ODB eligible people, including Trillium Drug Program recipients, are required to pay at least $2 each time they fill a prescription. In addition, single seniors (people aged 65 or older) who have an annual income of $16,018 or more and senior couples with a combined annual income of $24,175 or more pay a $100 deductible per senior each year before they are eligible for drug overage. After paying the deductible, they then pay the dispensing fee of up to $6.11 for each prescription filled during the benefit year. People on Social Assistance should be issued a Drug Card to take to the pharmacy to get listed drugs covered.
ODB covers prescription drugs listed by the Province and a number of limited-use drug products, some nutritional products, and some diabetic testing products. You are eligible if you belong to one of the following groups of Ontario residents and have a valid Health card:
- People 65 years of age or older
- Residents of long-term care facilities
- Resident of Homes for Special Care
- People receiving professional services under the Home Care program
- Trillium Drug Program recipients
- Social assistance recipients including Ontario Works
- Ontario Disability Support Program (ODSP) recipients
- Many drugs for the treatment of cystic fibrosis and thalassaemia
- AZT, ddl, ddC, and pentamadine for people who are HIV positive
- Erythopoietin (EPO) for the people with end stage renal disease
- Cyclosporine for people who have had a solid organ or bone marrow transplant
- Human growth hormone for children with growth failure
- Clozapine for treatment of schizophrenia
- Alglucerase for people with Gaucher’s Disease
- An Ontario resident with valid Ontario Health Card, and
- A patient with one of the diseases or conditions covered
- Meet the established clinical criteria, and/or
- Approved by a designated centre/physician for a specific drug product
Helps people who have high drug costs in relation to their income. You can pick up a Trillium Drug Plan Application Kit from your local pharmacy. You must provide the required financial information and return the application to the Trillium Drug Plan. You will be informed by letter whether you have been approved or not and at what deductible level. This information is in a database accessible by your pharmacist. You must bring your Health Card when you get your prescription filled.
Covers only drugs that are:
- Listed in the ODB formulary/Comparative Drug Index (Parts III and IX) or
- On the Facilitated Access List of HIV/AIDS drugs (Part VI)
- Your private insurance does not cover 100% of your prescription drug costs
- You have valid Ontario Health Card, and
- You are not eligible for drug coverage under the Ontario Drug Benefit (ODB) Program
A major limitation of the Trillium Drug Plan is that it requires people to find the cash to pay the deductible up-front for their medications. People are put in the situation of being caught in a cycle of having to have the cash for their medications every four months.
If you cannot access your medication because you cannot pay the deductible, see the question on page 9. If you cannot access Trillium drug Plan support because your drug is not on the formulary, see the question on page 10.
Ad hoc support is available through some agencies, non-profit, and charitable organizations along disease categories. For example:
Free Drug Service For Oral/Subcutaneous Drugs
Provides some oral and subcutaneous chemotherapeutic drugs and other selected agents for patients who are under 65 years, do not have any private insurance or coverage through any social assistance program. Patients must have a letter from a social worker or public health nurse indicating that the Trillium Program has been reviewed with the patient and that the patient does not have enough money to pay the Trillium Program deductible for the family income level. This letter must be presented to one of the pharmacies listed below. There is a specific list of drugs currently available through the Free Drug Service. Prescriptions filled at any of the province’s Regional Cancer Centers, Princess Margaret Hospital or Hospital for Sick Children are free of charge for patients who meet the eligibility criteria. For more information, contact Cancer Care Ontario (416) 971-9800 (tel)
Have a number of funds for financial assistance for people with HIV/AIDS:
Trillium Fund: assists people who are accessing the Trillium Drug Program to offset high medication costs.
Medical Assistance Fund: assists with medical procedures and costs not covered by any government or private insurance plan such as optical and dental costs, medically prescribed drugs, medical supplies, hospital and ambulance charges etc.
Supplementary Therapies Fund: complimentary and naturopathic therapies and medications are considered under this fund with a written recommendation from a medical or naturopathic doctor. People may also use this fund to access veterinary costs not already made available by the Foundation, which provides annual shots and examinations at reduced rates. The fund is for emergencies or sudden illness only and is not intended to supplement regular vet costs such as grooming, flea treatment etc.
This fund is for HIV positive children under 18 and may be accessed by their parents/guardians. Its purpose is to assist with miscellaneous expenses such as clothing and back to school needs.
For more information, contact the Toronto People With AIDS Foundation (416) 506-1400 (tel).
A request for special coverage of a non-listed drug product not normally covered under the Ontario Drug Benefit (ODB) program can be made.
In general, you must already be eligible for drug coverage under the ODB program before you can request special coverage through Section 8. If you belong to one of the following groups of Ontario residents and you have valid Ontario Health Card, you are eligible for drug coverage under the ODB program:
- people 65 years of age and older
- residents of long-term care facilities
- residents of Homes for Special Care
- People receiving professional services under the Home Care program
- Social assistance recipients (General Welfare or Family Benefits Assistance)
- Trillium Drug Program recipients
On your behalf, your doctor requests coverage for a specific period of time, for a particular drug not normally covered under the ODB program. As part of the request, your doctor must submit relevant medical information including an indication of why you cannot use any covered products. Medical experts will review your doctor’s request and will advise him/her whether coverage has been approved.
If your Section 8 request is approved, the same deductible schedule as the ODB Program will apply.
People applying to the Trillium Drug Program should note that the costs of non-ODB drugs would not normally count toward the Trillium deductible. The ministry will, however, consider requests for non-ODB drugs even if they are not yet eligible for ODB coverage. If you doctor’s request for one of these drugs is pre-approved, you will be able to purchase prescriptions for the drug and have the costs count toward your Trillium deductible. The ministry must approve requests for non-ODB drugs before the costs can count towards the Trillium deductible. If your request is not approved before purchasing a non-ODB drug, the costs will not count towards the deductible.
Ministry of Health and Long Term Care INFOline: 1-800-268-1154 (Toll free in Ontario)
The stated goal of this program is to provide equal access to new effective agents throughout the province. As a result, access to expensive drugs is not limited by place of residence or a health care facility’s drug budget and new treatments are introduced in a standard manner on a provincial basis.
A Policy Advisory Committee recommends to Cancer Care Ontario the drugs and the eligibility criteria for funding. Cancer Care Ontario is responsible for managing the budget on behalf of the Ministry of Health and reimbursing cancer centres and hospitals for the drug costs of those patients who meet the eligibility criteria. Your physician submits a form to Cancer Care Ontario. Cancer Care Ontario then reimburses the hospital or cancer centre. Since these medications are administered through a hospital or cancer centre, there are no costs to the patient. To contact Cancer Care Ontario call (416) 971-9800 (tel)
Bill 26, the Omnibus Bill passed by the Harris government in 1996, also amends the Health Insurance Act and the Health Care Accessibility Act. Bill 26:
- Removes all references to “medically necessary” services and substitutes a broad power in Cabinet to decide which services will be insured. This opens the door to serious de-listing of services.
- Gives the government the power to determine whether medically necessary services are insured services or not
- Gives the Cabinet the power to determine if the services are medically or therapeutically necessary
Prior to Bill 26, OHIP was required to cover all medically necessary services provided by physicians. Bill 26 removes all references to “medically necessary” services and substitutes a broad power in Cabinet to decide which services will be insured, under what conditions or limitations prescribed by regulations.
This new stipulation modifies the concept of medically necessary services without any public debate. Whittling down the services that are insured under the Canada Health Act is another route to two-tier medicine. Those who can afford it will buy insurance to cover whatever the Province no longer covers.
In the last seven years, the Harris government has restricted or removed about $100 million worth of services – more than 45 procedures – once considered “medically necessary” from public coverage. One Pap and bone-density test a year and two ultrasounds during pregnancy are covered. Eye exams are covered every two years instead of annually. Biopsies of facial lesions are covered only if found to be malignant. If not, the patient is billed. Recently, the Harris government announced that physiotherapy performed by physicians and audiology services performed outside physicians’ offices have been de-listed.
- The patient gets written authorization from the Ministry of Health and Long Term Care before the treatment is given, and
- The treatment is generally accepted in Ontario, and
- The treatment or an equivalent procedure is not performed in Ontario, or
- The treatment is performed in Ontario but it is necessary that the person travel outside Canada to avoid a delay that would result in death or medically significant irreversible tissue damage.
OHIP provides limited coverage for emergency health services (those given without prior approval) given in connection with an acute, unexpected condition, illness, disease or injury that arises outside of Canada and requires immediate treatment. If you are injured or become ill while traveling outside of Canada, OHIP will pay for emergency health services as follows:
- If you receive emergency care from a physician or other eligible health care provider, OHIP will pay only as much as that service would have cost in Ontario;
- Emergency inpatient hospital services eligible for OHIP coverage will be paid up to a maximum of $400 (Canadian) per day or the amount billed whichever is less:
- up to $400 for complex hospital care, such as surgery or coronary, neonatal, pediatric or intensive care;
- up to $200 for less intensive medical care;
- Emergency outpatient services, with the exception of dialysis, will be paid to a maximum of $50 (Canadian) for all out-patient services provided on any one day. Out —of-country dialysis treatment will be paid at a rate of $210 (Canadian) per treatment.
- Many health services outside of Canada cost much more than the ministry pays. You are liable for any difference in cost.
- The ministry does not cover some health services. You will have to pay the full costs for them.
- An accident can happen to anyone, even during a very short business or recreational trip. Extra insurance must be purchased before you leave Ontario.
- Details of your treatments;
- Your original receipt for payment;
- Your name and current Ontario address;
- Your Health Number
Most of your Ontario health coverage benefits can be used across Canada. The province or territories you are visiting will usually bill Ontario directly for services so that the patient does not have to pay up-front for services and then be reimbursed.
You will have to pay for services up-front in the case of chiropractors, optometrists, podiatrists and osteopaths, or doctors’ services in Quebec and then submit receipts to your local OHIP office to be reimbursed. You will be partially reimbursed up to the level covered for these services in Ontario.
The Ontario Ministry of Health and Long Term Care does not cover prescription drugs from pharmacies, ambulance services, long term care services and outpatient physiotherapy services provided in other provinces and territories.
If the Ministry decides that you are not eligible for OHIP coverage for a particular treatment, you may appeal that decision to OHIP’s General Manager. A ministry representative at the local ministry office will present applicants who are denied coverage by the ministry with an eligibility assessment letter. This letter provides detail about the right to appeal, the reason for the denial of coverage, and general information about the appeal process, including how to submit your appeal to the General Manager for review. When a decision is made, a letter will be sent to you outlining the legislative and/or policy basis for the decision. If you disagree with this decision, the General Manager will provide you with information about appealing to the Health Services Appeal and Review Board (HSARB) and will also provide you with information about how to appeal. HSARB is an independent body made up of members of the general public. The board will hear evidence from both the appellant and the General Manager to decide whether or not the ministry’s decision was correct and in accordance with the Heath Insurance Act and its regulation. If you appeal to the HSARB, the appeal board will let you know when your hearing is scheduled and what you need to do before the hearing takes place. After the hearing, the appeal board will send you a letter about its decision. You can bring someone to advocate on your behalf or a lawyer to the hearing.
If your condition allows for this lengthy process, you should certainly undertake it. But if your need for the treatment is not urgent, it may be necessary to get support from your local M.P.P., your local health coalition, legal clinics, non-profit and charitable organizations, and advocacy agencies to advocate for you and others, in your situation. For information about how to go to this next step, see If Nothing has Worked, Then What? on page 34.
Ontario has de-listed more and more health services and equipment from coverage by OHIP, and user fees throughout the health system are increasingly hitting people hard, especially those with low or fixed incomes.
- a man has been diagnosed with prostate cancer and is receiving treatment,
- a doctor suspects prostate cancer because of a man’s history and the results of a physical examination
- In men without symptoms (screening), PSA is not paid for by OHIP.
Many people across the province need assistive devices to function in their daily lives. The Assistive Devices Program (ADP) covers many categories of devices ranging from Communication devices, to Orthotic Devices and Wheelchairs, positioning and ambulation aids.
As with the programs to help people access medications, we understand that this is again a very ad hoc support system for people who need these devices and many people, especially fixed and low-income people, may fall through the cracks. There are significant limitations and shortfalls with this program which include:
- You must pay the client share of the cost ( 25%) up-front at the time of purchase
- In cases where ADP contributes a fixed amount, such as for hearing aids for adults, breast prostheses and artificial limbs, if the vendor’s retail price is more than the maximum amount that ADP will pay, you will be responsible for the difference.
- Prices, delivery times and services vary greatly between vendors
- ADP does not pay for repairs or maintenance
- ADP will contribute to the cost of replacing a device only if the client’s functional ability or body size has changed or the old device has worn out. ADP will not contribute to replacement if the original device has been lost, stolen or damaged by misuse.
If you need a device or supplies that are not covered under this program, remember that the programs available and what is covered are political decisions. You may need to lobby policy makers if you are in this situation. Refer to the If Nothing Has Worked, Then What? on page 324
Local health, social service, or advocacy agencies may have resources (see Appendix A, B, C, and E of this book). You may have to write to your local Lions or Rotary Clubs, churches, or other charities to ask for help. The best first stop is your local Community Information Centre. See Appendix B for listing of Ontario Community Information Centres on page 38.
If you have a long-term disability you may receive help to buy needed equipment and supplies through the Assistive Devices (ADP) and Home Oxygen Program (HOP)
HOP pays for oxygen and oxygen delivery equipment, such as concentrators, cylinders, liquid systems and related supplies, such as masks and tubing.
Initial access is often through a medical specialist or general practitioner that provides a diagnosis. In most device categories, an authorizer assesses the specific needs of the person and prescribes appropriate equipment or supplies. Finally, a vendor sells the equipment or supplies to the client.
ADP pays up to 75% of the cost of equipment, such as artificial limbs, orthopedic braces, wheelchairs, breast prostheses and breathing aids. For other devices, such as hearing aids, the ADP contributes a fixed amount. With required supply items as ostomy and needles and syringe for seniors, the ADP pays an annual grant directly to the person. HOP pays 100% of the cost of oxygen and related equipment for seniors and those on social assistance, home care or residing in a long-term care facility and 75% for all others.
In most cases, the client must pay a share of the cost at time of purchase and the vendor bills ADP or HOP the balance.
For ADP supply categories where grants are paid, the client pays 100% of the cost to the vendor using funding provided by ADP.
All ages are eligible for devices except the needles and syringes grant, which is restricted to insulin dependent seniors.
HOW TO APPLY
You can get fact sheets and application forms from the Ministry of Health. Fact sheets on each category of equipment show medical conditions and approvals you need to get help. The fact sheets or application form for each category of equipment lists the steps to apply.
If you do not have insurance, the only support available is ad hoc:
- Voluntary/charitable organizations e.g. March of Dimes. Easter Seals Kiwanis
- Social assistance — If receiving social assistance there is Special Need Fund , If not receiving assistance there is a Hardship Fund
- Department of Veterans Affairs
- Waive by vendor
The Assistive Devices Program (ADP) helps pay for devices to administer insulin, such as needles and syringes. It also helps pay for blood glucose meters, lancets and test strips.
For needles and syringes, if she is 65 or older, ADP gives a grant of $125 once a year. This is about 75% of the cost of needles and syringes for the average user of insulin.
For blood glucose meter, whatever your age, the Monitors for Health Program will pay 65% of the cost to a maximum payment of $75 for a regular meter. Glucose meters range in price from $10 – $65. If you are visually impaired, the maximum payment is $455 for a talking meter. The program will pay for a new monitor once every five years.
For supplies used with the blood glucose meter, such as lancets, penlets and testing strips, the program will pay 65% of the your costs up to a maximum of $500 in payment per year.
Unfortunately, you still have to pay the costs of a lot of these items up-front and then wait for reimbursement.
While the need for homemaking support is increasing, the response of the Harris Conservative government has been to limit access to these services. In January 1999 the Ministry of Health and Long Term Care drafted service guidelines for Community Care Access Centres (CCAC) to determine eligibility and priorities for service and levels of care. Later in 1999, the conservative cabinet passed Regulation #386/99 limiting homecare and home nursing visits. Under this regulation, the CCACs were directed to determine eligibility for care based on several criteria including whether family, friends, volunteers, cleaning ladies, grocery delivery services or others are able to provide care, and were directed to ration care based on service maximums. The regulation was passed on March 10, but not filed until July 6, 1999, a month after the provincial election. Currently, the government is in the process of passing the so-called Public Sector Accountability Act. CCACs across the province have had their budgets frozen and are reporting that thousands of Ontarians in need of home support and health care will see their services cut.
The public funding of homemaking support is woefully inadequate. This support is not based on need and is currently under threat of being deemed not “medically necessary”. Ontario’s Health Ministry is squeezing out homemaking support for seniors, in spite of a new report from Marcus Hollander in B.C. proving that people denied this service cost the health care system substantially more, over a three-year period, than those who did receive supportive care.
This is a public policy issue and requires a political solution that extends eligibility for homemaking services. See the If Nothing Has Worked, Then What? On page 34.
In the meantime, your mother can appeal the decision at the CCAC level. Each CCAC has an appeal process to try to resolve issues. It is usually a committee of the Board of Directors of the CCAC that hears the appeal. If you want another person to represent you, you must give written consent to the CCAC give this person case information.
If she is not satisfied with the appeal outcome at the CCAC level, under the Long Term Care Act, she can appeal the decision at the Health Services Appeal and Review Board (HSARB). HSARB decisions are final and binding and there is no further process for appeal. This process can be very long and drawn out and may take up to two years.
Unfortunately, if she is not eligible for government-funded programs, the alternative is to contact community agencies that have sliding scales according to income and if her income is low enough may not charge at all. Of course, if money is not a problem, she can hire private home health care providers and pay for care out-of-pocket.
In Toronto, The Homemakers and Nurses Services Program (416) 392-8545 (tel) offers subsidized homemaking services. It is funded through the City of Toronto.
Often, a huge responsibility is placed on family and friends to help out in this situation. If there are no family or friends capable of this support, the person often must go to a retirement home. See the Access to Nursing section on page 22 for more information on retirement homes.
Adult Day Programs
Home Health Care
Moving to a retirement or nursing home
Services to seniors
Tax returns, government forms and applications
Tips and hints that families have found helpful providing care
Toll Free Tel: 1-800-267-6272
This resource also has Ask the Expert where answers posted on the website and an extremely detailed, practical and comprehensive guide called How to Care: Your Eldercare Survival Guide.
MY FATHER JUST HAD MAJOR SURGERY AND CANNOT LEAVE THE HOSPITAL UNTIL APPROPRIATE HOME AND NURSING SUPPORT ARE IN PLACE YET THE HOSPITAL IS PRESSURING TO DISCHARGE HIM WITHOUT THESE SUPPORTS. WHAT CAN HE DO?
From 1995 — 1999 the Harris government took just under $1 billion out of the hospital system and approximately 9,000 critical, acute, and chronic care hospital beds were cut (according to Ontario Hospital Association figures).
As a result of bed and budget cuts, Ontario now has the shortest average length of stay in hospitals in Canada with the effect of patients being sicker upon discharge than in the past. At the same time, it is becoming increasingly difficult to access stable, appropriate home and nursing support. Together, this is having devastating consequences for people’s health that costs the system more in the long run.
In this situation, you can contact the hospital’s Patient Representative or Patient Advocate. You can try to persuade the physician, discharge planner, social worker, and CCAC representative in the hospital not to sign the discharge form. Don’t hesitate to make a fuss; it sometimes works. Remember that, except for the CCAC representative, these are all employees of the hospital.
Often, people end up going temporarily to a nursing or retirement home where you will also be charged for your bed.
Ultimately, you can refuse to leave in order to force the hospital to deal appropriately with your health needs. This may have some legal consequences. Contact a Legal Clinic (see Appendix G on page 43) for more information. However, it may also force the hospital and homecare systems to come to a better resolve regarding your needs.
Effective Sept 1, 2002 the chronic care user fee is $1445.71 monthly, $47.53 daily. An increase normally occurs July 1 of each year.
There are two types of rate reductions: full and partial
Full exemption is available for patients who:
- Are under the age of 18
- Are in receipt of family benefits or general welfare assistance
- Have monthly incomes below a certain level, established annually
- Have a third party (such as Workers’ Compensation Board, insurance company, Department of Veterans Affairs, or other Federal Government agency) who pays either the total hospital cost or the co-payment
|FAMILY SIZE||PAY NO USER FEE
Monthly income of
(Pay part of user-fee)
|One Dependant||$3,155 or less||$3,116 – $7,492|
|Two||$3,607 or less||$3,608 – $7,944|
|Three||$4,018 or less||$4,019 – $8,355|
|Four or more||$4,385 or less||$4,387 – $8,723|
A patient has a family income of $4000 per month and two dependents. This income falls in the range of $3,607 – $7,944 for a partial rate reduction (Table 1). The first $3,607 of the patient’s family income would be fully exempt. Only one-third of the remaining income (in this case, $393) would be used for the user fee. This patient would be required to pay $131 per month (1/3 of $393) or approximately $4.31 per day.
It must be acknowledged that with the laying off of nurses by the Harris government, this is the general situation within hospitals in Ontario. You can try within the hospital to resolve the situation through the hospital social worker, patient advocate or patient relation worker. You can find how to contact these people from the hospital web site, the hospital directory, or hospital personnel department. You may need to contact your local health coalition, your M.P.P, local media, and advocacy organizations about the situation. See If Nothing has Worked, Then What? on page 34 or more information. People in this situation often end up relying on family or friends to help or purchasing extra attendant help.
Prior to 1996, facility-staffing levels were determined through a combination of facility policy manuals, funding agreements with the Ministry of Health, and government regulation. In 1996, the Harris government deregulated facility staffing levels by removing the regulations that required facilities to provided 2.25 hours nursing care per day and the availability of a RN available at all times.
You can try to resolve the issue at the facility level as above. In addition, in response to a need Identified by the Concerned Friends of Ontario Residents in Long Term Care Facilities, a Family Councils Network project was established. This pilot project develops Family Councils where family members work as a group to advocate on issues in the facility that affects the quality and level of care. Unfortunately, only six non-profit and seven for-profit facilities are serving as test sites. You can contact the Family Councils Network for support in establishing a Family Council.
There is woefully inadequate regulation for retirement homes in Ontario. Recently, there have been lots of horror stories regarding staffing levels and conditions of homes.
Many organizations that advocate for people in retirement homes realize that the Complaints, Response and Information Service does not have the ability to protect standards for people in these homes. Political advocacy work is needed to re-establish clear and enforceable minimum standards for staffing level. We suggest that you get support from your local health coalition and M.P.P. in these efforts.
In Ontario, retirement homes are regulated by the Tenant Protection Act, 1997 under the Care Homes section. The Tenant Protection Act makes it mandatory that all retirement homes have:
A Care Home Information Package (CHIP) which states the agreement between the retirement home and the resident, services provided (care services and meals available) and the costs for these services and meals, complaints procedure and staffing levels. A CHIP must include:
- List of the different types of accommodations provided and the alternative packages of care services and meals available as part of the total charges
- Charges for the different types of accommodation and for the alternative packages of care services and meals
- Minimum staffing levels and qualifications of staff
- Details of emergency response system, if any, or a statement that there is no emergency response system
- List fee schedule of the additional services an meals available from the landlord on a user pay basis
- Internal procedures, if any, for dealing with complaints including a statement as to whether tenants have any right of appeal from the initial decision or a statement that there is no internal procedure for dealing with complaints
A written tenancy agreement, which must include:
- What has been agreed to with respect to care services and meals and charges for these (based on the information contained in the Care Home Information Package (CHIP) that is provided to the prospective resident prior to entering into a tenancy agreement
- A statement indicating that a tenant has the right to consult a third party with respect to the agreement and five days in which to cancel it
- The right to privacy
- Appropriate notice requirements for rent increases
- Written notice for terminating a tenancy (including a statement that a tenant can cancel the agreement by providing the landlord with a written notice of termination
- Provisions dealing with the eviction (or transfer) process of care home tenants in situations where a tenant no longer requires the level of care provided or requires a higher level of care than the landlord can provide
People should ask for and demand both a Care Home Information Package and a written tenancy agreement from the facility.
- The tenant no longer requires the level of care provided by the landlord or
- The tenant requires a level of care that the landlord is not able to provide
- Appropriate alternate accommodation is available for the tenant and
- The level of care that the landlord is able to provide when combined with the community based services provided to the tenant in the care home cannot meet the tenant’s needs
Complaints Response and Information Service
A group of local health coalitions, senior citizen’s organizations and non-profits have been lobbying for Provincial licensing of retirement homes with enforceable standards. Instead, the Harris government has funded The Ontario Residential Care Association (ORCA) (a voluntary, non-profit organization that accredits retirement homes in Ontario) to operate the Complaints Response and Information Service. They established a toll-free hotline that people can call to deal with issues such as:
- Finding the retirement home for you
- Referrals to community and government agencies
- Concerns about the food quality, nutrition and or special diets
- Cleanliness of the building
- Monitoring and delivery of medication
- Security and safety concerns
- Staff’s attitude and behaviour towards residents
If your difficulty lies in the area that relates to municipal public health or safety issues, such as fire or communicable diseases, the trained Complaints and Information officers can tell you who to talk to. If your problem relates to the food, housekeeping services or staff of the home, the Complaints and Information Officers will advise you how to deal with it. If required, they will talk to the Administration of the retirement home to arrive at a solution. It may be necessary for ORCA to inspect and report on conditions at a retirement home. If their best efforts don’t result in a satisfactory solution, the matter can be referred to the Complaints Response and Information Services Review committee. This committee may decide to post the complaint and the name of the home involved on the website of the ORCA where the public can view it. Retirement homes that belong to the Ontario Residential Care Association must be inspected on a regular basis to ensure that they meet or exceed ORCA’s accreditation standards. If the complaint deals with a subject covered by ORCA’s standards, the Review Committee may recommend that the accreditation of the home be revoked. The Complaints Response and Information Service does not only deal with retirement homes that belong to Ontario Residential Care Association but is authorized to deal with problems at any retirement home in Ontario.
The paragraph above is the way ORCA itself describes its operations. It sounds good. But not many people living in retirement homes know about this hot line. While it has received several thousand calls, only a handful concerned complaints/ most were just requests for information from persons thinking about going into a retirement home (great advertising for the high-end homes that are accredited by ORCA). When a complaint does come to this line, ORCA has nothing but the power of persuasion to try to improve conditions. That’s because without needing a license, these operators have nothing to lose by ignoring complaints. The worst ORCA can do is post their name on ORCA’s web site if they fail to improve conditions.
This “Complaints and Information Line” is, therefore, no equivalent to regulations and standards with inspectors and enforcement and is totally inadequate protection for people in retirement homes.
Through Health Canada federally, status aboriginal people are covered by the Non — Insured Health Benefits program (NIHB) for drugs, dental and vision care, medical transportation, medical supplies and equipment, and mental health services that are not covered by OHIP or private health plans.
Dentists have no obligation to take patients covered by the NIHB. Dentists who accept patients covered through the NIHB are required to get prior approval from NIHB for non-emergency treatments. NIHB will then reimburse the cost of the treatment to the dentist.
Your son does not have to pay cash up-front for his treatment. Health Canada has a Client Information Line for Non-Insured Health Benefits. They will give you names of service providers in your area that accepts NIHB without asking for up-front payment.
Emergency treatment will be reimbursed without Prior Approval.
To speed up the approval process, there is a Prior Approval Phone Line for dentists to call.
While NIHB must cover these services that are not covered by OHIP, in reality there are significant limitations. Aboriginal people, who live in the north, where services are scarce, will either have to wait or travel long distances for treatment. Often the transportation and meal allowances are not appropriate or sufficient and the allowance does not include the cost of bringing a family member or escort with you. In addition, when you call the Client Information Line to find services in your area, most often you must leave a message and it might take several days before your call is returned.
The Ontario Aboriginal Health Advocacy Initiative (O.A.H.A.I), formerly known as the Patient Advocacy Initiative, was developed to address issues and concerns with regard to the equitable access to and quality of health services for Aboriginal, First Nations’ and Metis people in Ontario. O.A.H.A.I’s recommendations include:
- A toll-free client information line for NIHB must be provided within all of the Ontario region
- Support for negotiations with service providers for direct billing must be an alternative to clients paying money up-front for services
If you have been denied coverage for drugs, dental and vision care, medical transportation, medical supplies and equipment, and mental health services that are not covered by OHIP or private health plans by the Non — Insured Health Benefits program (NIHB), you should appeal the decision. Contact the Ontario Region to find out about appeal processes.
The following section outlines what is available formally:
A public inquest is a formal hearing into the events surrounding a death or deaths, attended by a jury, where subpoenaed evidence is heard. Parties with substantial, direct interest may also participate. Inquests may be held into deaths that raise specific local concern or may raise social issues with province-wide impact.
On the basis of an inquest’s findings, the jury presents a number of recommendations, which are forwarded by the chief coroner to appropriate agencies for consideration.
Any member of the public can notify a coroner when a death might need to be investigated.
Most of the time, requests for an inquest are denied. It will be a very difficult fight to have an inquest called. It appears that media, public pressure and intensive lobbying are often necessary. You will probably need to start by making the request and getting letters from organizations sent in supporting your call for an inquest. You may have to go to your local media, conduct sit — ins at the Coroner’s Office, or hold other events to push your case with no guarantee of success.
A regional coroner’s review provides an examination of cases that are not approved for a full inquest and take place when the coroner expresses concerns regarding a death. An informal meeting with voluntary attendance, it can include the coroner, the family and any others directly involved in order to better understand the events and implications of the death.
Inquests and Reviews clarify facts and generate thousands of recommendations every year. The recommendations are not mandatory. They can be used to inform the public of what has been learned through the investigation. After an inquest or review, you may have to conduct a campaign to inform the public and to ensure the recommendations are put into practice.
On your behalf, a lawyer can launch a civil suit in a court of law. Networking with others seems to be the best way to find a good lawyer with experience in this process. Contact your local health coalition. If you are successful, you will be awarded a monetary figure in compensation. This can be an extremely costly, long and drawn out process.
With the Coroner’s Office, it appears that media, public pressure and intensive lobbying are often necessary at every step in this process. Networking with others in similar situation may also be necessary. We heard the story of a man, whose wife had died suddenly after surgery, who went to the media and appealed for anyone who had a similar experience to contact him. From someone who contacted him, he found a doctor who would give a medical opinion on his behalf.
Once all the information has been reviewed, the Committee will decide to do one of the following:
- decide that the doctor’s conduct or the care provided was appropriate
- remind, counsel or caution the doctor in writing if the Committee believes the doctor would benefit from some advice or direction as to how to conduct him or herself in the future
- Require the doctor to appear before a panel of the Committee in Toronto to be cautioned. At that appearance, the panel will discuss with the doctor the steps the Committee believes the doctor must take to avoid future difficulties. Doctors who are required to appear before a panel are often asked to prepare for the meeting by making practice changes, reviewing relevant literature or taking other steps.
- direct the doctor to the attention of the Quality Assurance Committee where he or she may be assessed and required to participate in educational programs
- refer the doctor to the College’s Executive Committee if there are concerns about the doctor’s health
- refer the concerns about the doctor to the Discipline Committee
- decide not to investigate having determined that the complaint is frivolous, vexations, made in bad faith or is an abuse of the process
Ontario has an Office of the Ombudsman whose job is to investigate complaints against provincial government organization.
The Ombudsman may write a final report and, if the recommendations are not implemented, may:
- send the report to the organization and the Minister in charge
- sent the report to the Premier
- make a Special Report to the Legislature
While the Ombudsman can bring public attention to an issue or situation, a major limitation of this process is that the Ombudsman has no authority over the provincial organizations to implement the recommendations. However, it is still worthwhile to make a complaint.
The Ombudsman has jurisdiction over all provincial government organizations as an office of last resort. This means that all available complaint and appeal procedures must be used before the Ombudsman conducts an investigation. Examples of complaints that may be investigated:
- Drivers’ licenses
- Health insurance (OHIP)
- Family benefits
- Workers’ compensation
- Family Responsibility Office
- Treatment of inmates
- Access to government services
- Patient care in psychiatric hospitals
The Ombudsman cannot investigate complaints outside his jurisdiction, although referrals are provided. Examples of complaints that cannot be investigated:
- Private companies or individuals
- Doctors or lawyers
- Decision of judges or courts
- Decisions of Cabinet
- Employment insurance, or Canada Pension, which are Federal programs
- Garbage collection, or by-law enforcement, which are municipal matters
Telephone access is the most frequent method used by the public to contact the Ombudsman. Your call may result in a referral, a resolution facilitated informally, or an investigation. A formal investigation requires a complaint in writing.
CONTACTING YOUR M.P.P.
You will need to be prepared to meet with your M.P.P. who may be able to intervene on your behalf. We suggest that you bring another person into the meeting with you. Bring written documentation of the situation and what you have done and who you have contacted to date. Be clear as to what you want the M.P.P. to do to help you. Get a written record of the M.P.P.’s response and what action s/he has agreed to take. Be very organized, set timelines to the actions your M.P.P. will take and use registered letters so there can be no deniability. If your M.P.P. is a member of the Opposition parties, s/he may be able to raise a question in the legislature to the appropriate government Minister about your concern and put pressure on the Minister and government to respond to the situation. If your M.P.P. is part of the government, within the caucus h/she can raise the issue and persuade the government and/or the appropriate Minister to address the situation. See Appendix F on page 42 of this handbook to get your M.P.P.’s name and contact information.
Contact your local Community Information Centre (see Appendix B on page 38 for listings of print, radio, and television media in your area. It might be effective to work with an individual reporter to help him or her develop an in-depth understanding of the issue. Sometimes it is effective to take out an ad to get other people facing the same situation to contact you. As a group, you can strategize and have a greater chance of success. The man involved in a civil suit described on page 28 is a wonderful example of how the media can be used to network and gain access to resources. Also, you can ask reporters who have done extensive research on healthcare issues if they know knowledgeable lawyers, doctors, and others experts in this area.
STARTING A LOCAL HEALTH COALITION
If your city or town does not already have a local health coalition, you will need to organize with others to advocate for the health services that you need. One local coalition came into existence after a woman, who was upset about the level of care her father was receiving in a Long Term Care Facility, placed an ad in her local newspaper asking for people in similar situations to contact her. This group got together and began to organize and strategize a plan of action to advocate for the services people need. If your city has a local health coalition, by getting active in your local coalition you will meet people with similar issues and gain access to more resources and influence. Local health coalitions have organized protests to stop hospital closures, have publicized health care horror stories, organized lobbies, galvanized public pressure, and more. Call us, Ontario Health Coalition, at (416) 441-2502 if you want to start a local health coalition. See Appendix A on page 37 for listings of local health coalitions.
COMMUNITY INFORMATION CENTRES
Your local Community Information Centre (see Appendix B on page 38) is your best resource of information about what community agencies, non-profits, service organizations, and health advocacy organizations are in your area. Joining with these agencies to seek support and advocacy may increase the effectiveness of your efforts.
USING THE INTERNET
Lots of people are using the Internet to find others in the same situation and get organized. For example, the Family Council Network, the Ontario Community Support Association, and the Caregiver Network website all have bulletin boards where people can network with others with similar concerns and begin to join forces to access resources and organize. Do a search for your illness or condition. You may find chat rooms/sites/other people in the same situation.
If you have tried all the available appeal processes and avenues to no satisfaction or are being stonewalled, you may need to move to the next level and seek political solutions. Yes there is definitely strength in numbers. This is the time to join with others and organize. Working as a group, you are indescribably more powerful than as an individual. Fifty people lobbying a M.P.P. can make a difference.
Here are some tactics that can have an effect on decision-makers:
- Public Meetings
- Unannounced delegations to hospital CEO, M.P.P., or corporate head offices
- Sit — ins
- Pickets with signs
- Contact union workers at the health facility who are also concerned about staffing and care levels to strategize with the union how to put pressure on the facility and create political protest. In many facilities, the main switchboard will put you through to the union. Or ask a staff person which union they belong to and how to contact the union office.
This is not intended to be a “how to” for these tactics but are some ideas to get you thinking. You will need the support and resources of local health coalitions and community organizations to help you strategize successful political protests.
DON’T GO IT ALONE!
A good rule of thumb is never to go into a meeting alone. Bring an advocate or friend. Both of you need to keep good records of everything that has been said, witnesses, dates, etc. A daily diary even with short form notes is ideal.
WHEN IN DOUBT, ORGANIZE!
Think about how you can find others who share similar experiences and get together. A group is more powerful than one person. Sharing strategies and information is invaluable.
Advocacy Centre for the Elderly
2 Carlton Street
Toronto, ON M5B 1J3
Tel: (416) 598-2656
FAX: (416) 598-7924
Long — Term Care Facilities in Ontario: The Advocate’s Manual, 2nd edition
Ontario Women’s Health Network
Tel: (416) 408-4840
Fax: (416) 408-2122
Toll Free: 1 (877) 860-4545
Ontario Women’s Health Network Health Services Directory
Canadian Cancer Society
1639 Yonge St.
Toronto, ON M4T 2W6
Tel: (416) 488-5400
Fax: (416) 488-2872
Toll Free: 1 (800) 268-8874
Action through Advocacy Guidebook
Willow Breast Cancer Support and Resource Services
785 Queen St. East
Toronto, ON M4M 1H5
Tel: (416) 778-5000
Fax: (416) 778-8070
Toll Free: 1 (888) 778-3100
Coping with Your Financial Concerns
When you Have Breast Cancer:A Guide to Resources and Services
in the Province of Ontario
Ontario Coalition of Senior Citizen’s Organizations
3101 Bathurst Street
Toronto, M6A 2A6
(416) 785-8570 (tel)
Advocacy Handbook for Seniors
(available in English and French)
Appendix A – Local Health Coalitions
Appendix B – Ontario Community Information Centres
Appendix D – Psychiatric Patient Advocacy Offices of Ontario
Appendix E – Provincial Health & Advocacy Organizations
Appendix F – Ontario Members of Provincial Parliament
Appendix G – Ontario Legal Clinics
Appendix H – Ontario Family Councils
Appendix I – Ontario Councils on Aging
Appendix J – Ontario Community Health Centres
Appendix K – Canadian Mental Health Association Ontario Branches
Appendix L – Ontario Native Friendship Centres
Appendix M – Ontarians with Disabilities Act Committee