Managing your health: a guide for people living with HIV
20. Money matters
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In this chapter you will find out about the various financial assistance programs that may be available to you if you decide to leave work or work part time as a result of an HIV-related illness. Deciding whether or not to continue working, change jobs or work less is one of the biggest decisions you can make. Drug coverage and a secure income are crucial to your quality of life. This chapter explores some of the options available if you are unable to work, and suggests where you can find more information to explore these options further.
Continuing to work after an HIV diagnosis
Many people now continue to work after an HIV diagnosis. But, if you have to leave work because of an HIV-related illness, you may want (or need) to return to work after your health has improved. However, you may have to negotiate with your employer about time off for doctors’ appointments or for days when you feel unwell. You may find a regular nine-to-five working day is no longer possible, and requesting flexible working hours may be part of this negotiation.
If your workplace has a human resources department, you can consult with staff there, but be aware that the negotiations could become delicate and intimidating, especially if you need to let people know you are HIV-positive. Your local AIDS service organization can guide you along this process—staff there have worked with clients who have made these decisions in the past.
Your financial security is extremely important; it is even more so when you discover you have HIV. Money does matter. The stress of worrying about finances is hard enough on people in good health; these worries can affect your health at a time when you can least afford it. Creating a budget for yourself and sticking to it will be essential if you decide to leave work for a period of time, or permanently. You will need to be realistic about the things you need and those you can do without. Sticking to a limited budget will likely be a difficult experience, but this is a necessary adjustment to the situation of reduced income.
In this section we’ll talk about the work-related disability programs that may be available to you if you choose to leave work after finding out you are HIV-positive.
Short-term and long-term disability
Many employers provide some form of insurance for a limited time (short term) or for longer periods (long term) if their employees become unable to work because of ill health. Employees may be qualified to apply for these benefits once they have fulfilled their contractual obligations (such as probationary period, required working hours and contributions to pension/disability funds). Whenever available, this is often the best option when considering a break from work. Most work-related short-term disability programs offer a higher percentage of your salary—anywhere from two-thirds to full pay—than government disability programs. Workplace disability programs may also include coverage for the cost of your drugs and other health needs.
While some employers offer short-term disability benefits (usually to a maximum of about three months), not all provide long-term disability options. If you are unable to go back to work after your employer’s short-term disability benefits run out, and your employer does not offer long-term disability benefits, you may have to look for alternative sources of income such as Employment Insurance benefits or a longer-term solution such as the Canada Pension Plan or the Quebec Pension Plan disability program.
If you do enroll in a long-term disability benefits program, your employer may encourage you to apply for Canada Pension Plan or Quebec Pension Plan disability program as well. Usually, any money that you receive monthly from a government disability plan is deducted from your private long-term disability benefit.
Try to find out exactly what benefits are available to you through your employer’s private disability insurance program and for how long they are available. This information provides a good starting point for your decisions. If you have any reservations about revealing your HIV status, it is useful to know that you do not need to be specific about your exact medical condition. All that is needed is your doctor’s certificate stating that you are unable to work due to poor health.
Employment Insurance sickness benefits
Employment Insurance sickness benefits are paid to eligible applicants who have to stop working because of illness for a maximum of 15 weeks. To receive Employment Insurance sickness benefits, you must apply for the benefit and have worked a minimum of 600 hours in the last 52 weeks (or since your last Employment Insurance claim). You must also provide a record of employment from your employer and a medical certificate that confirms how long you will be unable to work.
If you are eligible, there is a two-week unpaid waiting period before these benefits start to be paid to you. The basic Employment Insurance sickness benefit rate is 55 per cent of your average insured earnings, with a yearly maximum insurable earning. Your Employment Insurance sickness benefit, like regular Employment Insurance earnings, is taxable income. If you work while receiving this benefit, you must declare your earnings. These will be deducted, dollar for dollar, from your benefits. You are required to provide reports to Service Canada every two weeks to demonstrate that you continue to be eligible for benefits. If you are still unable to return to work at the end of the period covered by your Employment Insurance sickness benefit, you may be able to receive regular Employment Insurance benefits without a waiting period.
For more information about applying for Employment Insurance sickness benefit, visit your local Service Canada office.
If you cannot continue working at any job on a regular basis for health reasons, and you meet the eligibility requirements, you may be able to receive a portion of your Canada Pension Plan or Quebec Pension Plan disability program monthly. The amount of money you will receive depends on how long you have been paying Canada Pension Plan or Quebec Pension Plan premiums, and how much you have paid into these plans. There is a maximum amount you can receive from these programs each month. The rate is adjusted each January to reflect the cost of living.
Disability benefits from all other sources will be affected by the Canada Pension Plan or Quebec Pension Plan disability program benefits you receive. For example, provincial or private disability pensions deduct, dollar for dollar, any amount you receive from the Canada Pension Plan or Quebec Pension Plan. While most provincial or territorial disability benefits are non-taxable, Canada Pension Plan or Quebec Pension Plan disability program benefits are taxable income. Canada Pension Plan or Quebec Pension Plan disability pensions do not provide any other benefits (like drug coverage or health-related devices) apart from the financial assistance, and are not guaranteed for life. Periodic medical assessment may be required to see whether your condition has improved enough to go back to work. Dependent children (under 18 years of age) of Canada Pension Plan or Quebec Pension Plan disability program recipients are also eligible to receive financial assistance from the program.
The Canada Pension Plan or Quebec Pension Plan disability program offers a disability vocational rehabilitation program for recipients who are willing to go back to work, if their doctors agree they can cope with a back-to-work rehabilitation program. This program may involve returning to work at the company where you were employed at a modified version of your previous job, or retraining and upgrading to prepare you for a different job.
On this program, you are also allowed to earn up to a certain amount before taxes through employment without informing Service Canada and without losing the disability benefit. This earning is taxable income that will need to be declared on your income tax return. Once you have earned up to the allowable amount from working, you must inform Service Canada so their personnel can assess your goals regarding future employment. If you are only able to work occasionally, you may be able to earn more without compromising your disability benefit, but it is important to inform Service Canada, as each case is assessed individually.
If you return to full-time employment and give up the disability benefit, but have to stop working again within five years of your return because of your existing disability, you may request a rapid reinstatement into the program. This rapid reinstatement will restart your Canada Pension Plan or Quebec Pension Plan disability program benefit in less time than it took after your initial application.
For more information on Canada Pension Plan or Quebec Pension Plan disability program benefits, visit your local Service Canada office.
Provincial and territorial disability programs
Unfortunately, not everyone has work-related disability plans to fall back on. In this case, government and other financial assistance programs may be available. Please note that all government social assistance programs have eligibility requirements, and you must have legal status in Canada to apply.
Most provincial and territorial governments now recognize HIV as a permanent medical condition that makes you eligible to apply for long-term disability benefits. The criteria for acceptance into these programs include financial eligibility and a medical assessment process by the program’s medical adjudication team. Provincial disability programs are also asset-tested, which means you will need to prove that your financial assets at the time of application do not exceed the maximum set out in the program’s policies.
The financial assistance offered by provincial and territorial disability programs includes an allowance for basic needs and shelter. The amount of financial assistance varies by province or territory, and by the number of people enrolled as dependents within the family unit other than the main registrant. Basic dental and vision costs are also covered by most programs, along with the cost of prescription drugs, including most anti-HIV drugs. Many provinces provide an extra allowance for medically required diets and cover travel costs for visits to your healthcare providers.
Other subsidies may be available for clients with dependent children, such as a winter clothing allowance, child-care costs and an allowance for newborn babies. Financial assistance may also be available for assistive devices such as wheelchairs or hearing aids. Decisions to provide assistance for these devices are usually made on a case-by-case basis.
Many provincial assistance programs recognize the episodic nature of HIV disease and accommodate the possibility of returning to full-time or part-time employment while receiving benefits. Employment start-up benefits may be available from your provincial or territorial social services ministry to help you with costs of going back to work, such as the work clothes and equipment required to fulfill the job function.
You will be required to report any earnings while receiving provincial or territorial disability benefits and a percentage of your earnings will be deducted from your monthly financial assistance payment. If you decide to go back to work full time and give up the disability benefit, transitional healthcare benefits may be made available until work-related or other private healthcare benefits are in place, usually upon completion of your workplace’s probationary period. To find out what is available to help you get reintroduced into the workplace, contact the ministry in your province or territory that oversees employment issues.
If your attempt to return to work is unsuccessful and you decide to re-enroll into the disability program, keep in mind that the procedure for reinstatement could vary in each province or territory. Some may require that you undergo a medical reassessment, while others provide quicker reinstatement into the program.
For a complete list of eligibility requirements, please consult your local Ministry of Community and Social Services, or the AIDS service organization in your area. They may be able to assist you in filling out your application forms or by answering questions related to your disability application.
Income replacement and other financial assistance programs
Many employers offer insurance to their employees through a plan in which the premiums are paid by the employee through payroll deductions. Coverage will vary from plan to plan. Some insurance plans provide wage replacement over a short- or long-term period if you become too sick to work, and most will provide for medical, dental, vision and hospital expenses as well as for some alternative therapies.
Membership in most group insurance plans is voluntary, meaning that you have the choice to apply and join, or not. It is normal procedure to undergo a medical assessment before joining one of these plans, and being HIV-positive may make you ineligible for some or all of the group insurance benefits. To find out what benefits are available to you, speak directly with the human resources department at your workplace (where available) or see your manager to discuss what is offered by the group insurance policy.
Private insurance, like group insurance, provides a number of benefits to eligible members. Some policies cover wages lost because of illness, extra health-related expenses, and financial settlements to your beneficiaries through life insurance after you die.
To be eligible for private insurance, you will need to pay a regular premium, usually on a monthly basis, and you will usually have to undergo a medical examination as a part of the condition for signing the policy or contract. Being HIV-positive may mean you are ineligible for a private insurance contract, as many have rules about enrolling people with pre-existing conditions such as HIV.
Private insurance is big business, and even when you are admitted into a program without a medical assessment, certain rules may override the insurance company’s obligation to make any future payment. Always read the fine print, and see a lawyer if you have any doubts or questions about a private insurance policy before you sign it.
Municipal social assistance (welfare assistance)
Social assistance is available to anyone over age 18, as long as you meet your municipality’s eligibility criteria. This generally means you must have legal status in Canada, reside in the municipality where you are applying, and have no source of income for the month in which you file your application. A fixed address is usually not necessary to apply, although you will receive less money if you cannot provide proof of monthly rental expense. This is an asset-tested program, which means you will need to prove that your financial assets at the time of application do not exceed the maximum set out in the program’s policies.
Benefits include a basic allowance, an allowance for rent, a drug eligibility card with which you can pay for most prescription drugs, a special diet supplement allowance for recipients with qualifying health conditions, and community start-up and maintenance benefits to help you get settled in the community, if necessary.
The availability of anti-HIV drugs has meant that many people with HIV can look forward to living into their retirement years. However, the complications of living longer with HIV, along with the diseases associated with old age, make it financially challenging for many seniors with HIV to meet their daily needs, especially those who have not worked for a long time, have used up their life savings or are transitioning from social assistance programs. Some of the financial security pension plans available to most legal residents of Canada are discussed below. Currently there are no retirement pensions or health benefits specific to seniors with HIV.
Canada Pension Plan and Quebec Pension Plan
A Canada Pension Plan or Quebec Pension Plan retirement pension is a monthly benefit paid to people who have contributed to the Canada Pension Plan or Quebec Pension Plan. The pension is designed to replace about 25 per cent of the earnings on which your contributions were based. Eligibility requirements for a retirement pension include having made at least one valid contribution to the plan, that you are either at least 65 or if you are between 60 and 64 you meet the earning requirements of the program.
Your retirement pension does not start automatically. You must apply for it unless you already receive a Canada Pension Plan or Quebec Pension Plan disability benefit and have just turned 65. At that point, your disability benefit automatically converts to a retirement pension. Your retirement pension is based on how much and for how long you contributed to the Canada Pension Plan or Quebec Pension Plan. The age at which you choose to retire also affects the amount you receive. Canada Pension Plan or Quebec Pension Plan pensions are taxable income, and monthly income tax deductions may be made upon request. Along with your retirement pension, you may also be qualified to receive the Old Age Security pension (see below), a monthly benefit available to most Canadians 65 years of age or older.
For more detailed information on the Canada Pension Plan and Quebec Pension Plan, visit your local Service Canada office.
The Old Age Security pension is a monthly payment available to most Canadians 65 or older. You must apply to receive benefits. If you meet the eligibility requirements, you may be entitled to receive the Old Age Security pension even if you are still working or have never worked. The Old Age Security pension, like most other retirement pensions, is taxable income.
There is a maximum annual income requirement to be eligible for the Old Age Security pension. Pensioners with a net income over the maximum allowed must repay part (or all) of their Old Age Security pension amount. The pension may be paid to people living outside of Canada if they lived in Canada for at least 20 years after reaching the age of 18, were a legal resident or Canadian citizen when they left the country and they lived or worked in a country that has a social security agreement with Canada. If you do not fall within any of these qualifications, Old Age Security pension will only be paid for the month that you left Canada and the six months following.
For more information about the Old Age Security pension and other supplementary income for seniors, visit your local Service Canada office.
The Guaranteed Income Supplement
The Guaranteed Income Supplement provides additional money, on top of the Old Age Security pension, to low-income seniors living in Canada. To be eligible for the Guaranteed Income Supplement benefit, you must be receiving the Old Age Security pension. The Guaranteed Income Supplement application must be renewed every year, usually by filling out your income tax return by the April 30 deadline. The Guaranteed Income Supplement stops being paid when your annual income upon retirement from sources other than the Old Age Security pension (for example, from Canada Pension Plan or Quebec pension Plan retirement, private or foreign pensions or RRSPs) reaches a maximum amount. You could also stop being paid the Guaranteed Income Supplement if you leave Canada for more than six consecutive months or if you fail to file your income tax within the stipulated deadline of April 30. While the Guaranteed Income Supplement is a non-taxable income, you will still need to declare it in your yearly income tax returns.
For more information about the Guaranteed Income Supplement for low-income seniors living in Canada, visit your local Service Canada office.
The Federal Extraordinary Assistance Program and the Multi-provincial and Territorial Assistance Plan
The Federal Extraordinary Assistance Program and the Multi-provincial and Territorial Assistance Plan are tax-free monetary benefits compensating Canadians who were infected by HIV through contaminated blood and blood products. The payments were originally given to people infected with HIV through blood products who signed to waive future court claims against the federal and provincial governments.
In December 1998, the federal, provincial and territorial governments announced a financial assistance package for spouses, partners and children of Extraordinary Assistance Program recipients who also became HIV-positive because of their relationship with that person.
The assistance program for eligible secondary infected individuals is one lump sum payment of $240,000. A signed waiver is required from recipients to protect the government from future court claims before payments are made.
Immigration Loans Program
The Immigration Loans Program is a federally funded program in which loans are approved according to the applicant’s needs and ability to repay. Loans are largely given to government-assisted or privately sponsored Convention refugees in Canada (see Chapter 17, Immigrants, refugees and non-status people with HIV). The loans may be approved to pay for the costs of medical examinations abroad, travel documents and transportation to Canada.
Assistance loans are also available to newcomers to cover expenses such as housing rental, telephone deposits and work tools. Interest is charged on Immigration Loans Program loans. The interest rate is set each January by the Department of Finance.
The Resettlement Assistance Program
There are several federally funded programs to help refugees to Canada establish themselves in their new country. The Resettlement Assistance Program is provided by the Government of Canada to people admitted to Canada as government-assisted refugees. These funds are given to help pay for necessities such as temporary shelter, help in finding permanent shelter and basic household items. The program also assists the refugee with income support for up to one year or until the person becomes self-sufficient, whichever comes first.
Income tax credits
People with HIV may be eligible for a non-refundable tax credit (or tax break) to reduce the amount of income tax they have to pay in a year. You will need to apply for a Disability Tax Credit Certificate, have it completed by a qualified health practitioner and submit the form with your income tax declaration. If your disability is designated as permanent, you only have to submit this form once, in the year you make your first claim.
If another person is supporting you (for example, a spouse or a family member), any unused portion of your disability credit may be claimed by that person.
Deferring your property tax
If you are disabled and unable to pay for the property tax on your home, you may be eligible to have these taxes deferred. Instead of you making the yearly payments, these taxes can be paid through a government loan, which you must repay if and when you sell your property, or which your beneficiaries must pay after your death once your estate is settled.
Covering medical expenses
Access to health services in Canada
The Canadian Health Act ensures that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis, without direct charge. These include doctor and hospital services and in-hospital drugs. There is no coverage for services provided by psychologists, chiropodists, acupuncturists, chiropractic doctors and many other alternative healing therapists, optometrists or ambulance services.
Apart from the medically necessary hospital and doctor services covered by the Canadian Health Act, provinces and territories may provide services not covered by the Act. For example, some provinces cover certain dental services provided by certified oral surgeons. These services are provided at the discretion of each province and territory. The one vital service provided by all of these provincial health plans is a drug plan (pharmacare) that guarantees access to necessary drugs at no cost, or a very reasonable one, to eligible residents in Canada.
The Non-Insured Health Benefits Program is a national health program administered specifically for eligible members of the First Nations and Inuit. It is a supplemental program designed to meet medical, vision and dental needs not covered by provincial or territorial insurance plans or private insurance companies. To receive the benefits, an eligible recipient must be a resident of Canada and one of the following:
- a registered Indian according to the Indian Act;
- a member of the Innu communities of Davis Inlet and Sheshatshiu;
- an Inuk recognized by one of the Inuit Land Claim organizations;
- an infant less than one year of age, whose parent is an eligible recipient.
Benefits under this program include:
- prescription drugs and approved over-the-counter medications listed on the Non-Insured Health Benefits Program Drug Benefit List;
- medical transportation when necessary;
- dental procedures;
- medical supplies and equipment;
- crisis intervention counselling;
- provincial healthcare premiums, where applicable.
The Non-Insured Health Benefits Program covers the lowest-cost drug alternative, also known as the generic drug. Only if the patient has an adverse reaction to the generic drug will the Non-Insured Health Benefits Program pay for a drug with a higher cost.
The Non-Insured Health Benefits Program is a supplement to other plans that you may have. In other words, if you are receiving any other disability or social assistance health benefits, or have medical coverage under any other plan, it is your responsibility to let the NIHB program know about it.
For the nearest Non-Insured Health Benefits Program office in your local area, visit the First Nations, Inuit and Aboriginal Health section of the Health Canada Web site (www.hc-sc.gc.ca).
The Interim Federal Health Program is a program administered by Citizenship and Immigration Canada. It provides temporary medical coverage for refugee claimants during their settlement period in Canada prior to their qualification for provincial healthcare coverage. Interim federal health coverage is usually valid for 12 months, although this period may vary.
The Interim Federal Health Program provides only essential and emergency health services for the treatment and prevention of serious medical and dental conditions, as well as contraception, prenatal and obstetrical care, essential prescription drugs and costs related to the immigration medical examination.
Once provincial coverage starts, refugees are eligible only for supplemental coverage under the Interim Federal Health Program, which covers emergency dental, vision and medication costs. The Interim Federal Health Program is not designed to replace provincial health plans and does not necessarily provide the same coverage available to permanent residents.
For more information about assistance for refugee assistance programs, visit the Citizen and Immigration Canada Web site (www.cic.gc.ca/english/refugees/index.asp).
Claiming medical expenses on income tax
Revenue Canada allows all taxpayers to claim medical expenses that are not covered by any private or government subsidy programs. This may reduce the amount of income tax you must pay. You may include costs for services provided by doctors, dentists or nurses, for health-related devices such as hearing aids, wheelchairs and prescription eyeglasses, for prescription drugs and also any premiums you paid to private health plans. If you have questions regarding what medical expenses may be claimed in your tax declaration, contact the Revenue Canada office nearest you.
Service Canada – Information on benefits and pensions
Federal, Provincial and Territorial Drug Access Programs - Information about drug benefit programs across Canada
Citizen and Immigration Canada – Information about refugee assistance programs
Other relevant resources can be accessed through the CATIE Ordering Centre or by calling CATIE at 1-800-263-1638.