Healthcare is publicly funded in Canada, but there are some direct and many indirect costs for families when a child is seriously ill or lives with a significant disability. You may have to take time away from work, or pay for extra expenses for transportation, parking, over-the-counter medications, medical equipment, or extra help at home.
Your child may need practical resources like equipment, technology, portable entertainment, medical supplies, respite care, transportation, and prescription medication plans among others. Financial assistance may be available for some or most of these needs.
Your family may benefit from practical resources like:
- Income supports that allow for an affordable leave from work such as Employment Insurance or Short Term Disability
- Additional funds to pay for costs related to your child’s illness or disability
- Tax deductions related to your child’s illness and your family’s expenses
- Community fundraising efforts
There are many different kinds of financial supports available to your child and your family. These supports are different, depending on where you live, and depending on other factors. If you work, you may have benefits from your employer or from the government. The kinds of benefits you get will depend on the type of job you have (permanent, contract, short-term).
The sections below will help you learn more about where you can find help and how to manage financial challenges.
If you have an Extended Benefits Plan as part of your job, you may qualify for short or long-term disability benefits. You will need a report from your doctor to say that you are unable to work due to such diagnoses as anxiety, acute stress disorder, depression and other diagnoses. The rules and amount of benefit paid are different for each extended health plan. Talk to your manager or human resources team member at work. Talk to your social worker or doctor for more information.
Extended benefits may also assist with medication expenses that are not covered in whole or in part by your provincial plan. Some benefits will also help you to look after yourself as a parent of a child with a serious illness. For example, you may qualify for coverage for counselling or even a massage.
The Government of Canada offers different kinds of benefits to help people who can’t work, who are sick themselves, or who are caring for someone who is sick. You might qualify for different kinds of benefits, including Employment Insurance Benefits and Caregiving benefits and leave. Sometimes, you can add different kinds of benefits together to give you financial support over many weeks or months.
Your province or territory may also have benefit programs to pay for things like prescription drugs, medical supplies, transportation or accommodation. Talk to your social worker.
You may be able to claim tax credits on your tax return for expenses when your child is ill. When possible, seek the services of an accountant or financial advisor who has special expertise in medical and disability taxation and insurance products that could help your family claim expenses or save money.
- Employment insurance benefits and leave - Government of Canada
- Canada Revenue Agency (CRA) disability tax credit - Government of Canada
If your child is of Indigenous or Inuit ancestry, regardless of where they live in Canada, and whether they live on or off reserve, they may be able to access support through Jordan’s Principle. This principle makes sure all First Nations children living in Canada can access the products, services and supports they need, when they need them. There is funding available to help with health, social and educational needs. Inuit children can also apply to Inuit Child First Initiative.
You may qualify for other supports from organizations that support children with your child’s background or condition. Medical social workers are expert in navigating the financial ins and outs of your child’s health condition in a funding system that is a maze.
- Healthcare services for First Nations and Inuit - Government of Canada
Social media and crowd-sourcing websites such as GoFundMe are now commonly used by families with children with severe health conditions. Many families raise money this way for specific items, a needed renovation, or to supplement lost income to care for a child—often with great success. The trade off is typically your child’s and your family’s privacy.
Some family foundations, disease-specific organizations or charities may offer financial support, grants for services, or in-kind donations of items you might need. Look for these opportunities on disease-specific websites.
Any of these donations must be reported on annual tax returns and/or on income reports for other government benefits like welfare or employment insurance.
Social workers know what kinds of supports are available from the federal and provincial governments, from community organizations, and from charities. Talk to a social worker at your child’s treatment centre or in your local community to find out what supports are available for your family.
Your social worker can help you apply for Employment Benefits. They will know if there are supports for children with your child’s particular condition or from your particular religious or ethnic community. Social workers can help you find programs, fill out forms, and submit applications—or better yet, they will sometimes complete the applications for you. If and when your finances change, they can help you re-apply or find new services and programs. Sometimes home care coordinators, case managers or community organizations specific to your child’s health concerns or disabilities can help as well.
If you apply for help from a government program, from your employment benefits, or if you file for tax credits, you will have to fill out forms and keep receipts. As soon as possible, start keeping track of your expenses. Save receipts related to the care of your child for medicines, travel, meals out of town, and other items. Keep track of dates for submitting applications. Ask your social worker for help.
- Caregiver and survivor benefits - Canadian Virtual Hospice
The financial supports available to your child and your whole family will vary by your location within Canada. There are federal, provincial, and regional supports but they are different in different places. The names of programs and the ways to apply vary. Each financial program has different forms and requirements, and different waiting times and renewal periods.
- Arrange to meet with someone knowledgeable about the resources available in your area. A hospital social worker or a community care caseworker can help you or can find someone who can help.
- Ask for a re-evaluation if and when your family changes or if your family income changes.
- Ask for help from your social worker, caseworker, or in some cases your Interlink nurse to complete the forms—or better yet, ask if they can do it for you.
Keep a record
- Keep a full copy of all the paperwork you submit.
- Keep a log of what you applied for, when the application was submitted, and how long you expect to wait for approval.
- Find out who to contact at the financial program office if you have questions. Add the name and contact information to your log.
After a death
- If you receive any financial benefits because of your child’s medical condition, you will no longer be eligible after they die. You or someone who acts on your behalf, will need to call the government program to inform them of your child’s death. If you don’t, you might have to pay back overpayments.
- Some families may be in need of assistance with funeral costs. The availability of such assistance depends on things like your unique financial situation and the type of funeral you are planning. The best thing to do is ask. Usually your child’s social worker or a palliative care specialist will be able to let you know what, if anything, is available to help. But be sure to inquire before you make any decisions - there are often limitations in the type of funeral that can be provided with financial assistance.