Financial resources
Canada child benefit (CCB)
This is a tax-free monthly payment made to eligible families to help them with the cost of raising children under 18 years of age. The CCB might include the child disability benefit and any related provincial and territorial programs. The Canada Revenue Agency uses information from your income tax and benefit return to calculate how much your CCB payments will be. To get the CCB, you have to file your return every year, even if you did not have income during the year. If you have a spouse or common-law partner, they also have to file a return every year.
Child disability benefit
If approved for the disability tax credit, you are automatically assessed for this benefit. You do not need to apply. This benefit is based on family income, is tax-free, and paid monthly for low to moderate income families caring for a child under the age of 18 with a severe and prolonged impairment in mental or physical functions.
Disability tax credit (DTC)
The DTC is known as the “disability amount” on your income tax return. The DTC is a non-refundable credit that reduces the amount of income tax that a person with a disability, or their supporting person, might otherwise have to pay. The DTC is also used to determine eligibility for the Child Disability Benefit, an amount available under the Canada Child Tax Benefit for a child under 18 with a disability. To claim the DTC, a person must file a completed Form T2201, Disability Tax Credit Certificate, signed by a qualified person. Forms are available at CRA offices, or by calling 1-800-959-2221; Forms can also be downloaded from the CRA Website.
Employment Insurance (EI) caregiving benefits and leave
Through EI, you could receive financial assistance of up to 55% of your earnings, to a maximum of $562 a week to provide care or support to a critically ill or injured person or someone needing end-of-life care. As a caregiver, you don’t have to be related to or live with the person you care for or support, but they must consider you to be like family.
There are 2 different types of Benefits:
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Family Caregiver Benefits for Children
Time off is needed to care for an ill child. Maximum weeks payable up to 35 weeks.
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Compassionate Care Benefits
End-of-life care is defined as providing care or support to a person who has a serious medical condition with a significant risk of death within 26 weeks. Maximum weeks payable up to 26 weeks.
Prerequisites:
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Your regular weekly earnings from work have decreased by more than 40% for at least 1 week because you need to take time away from work to provide care or support to the person. You accumulated 600 insured hours of work in the 52 weeks before the start of your claim, or since the start of your last claim, whichever is shorter.
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Medical Certificate from Physician is needed.
Caregiving credit
This is a tax credit that can be applied for when filing your current year tax return. The child must have a medical or physical infirmity and as a result of that infirmity is, and is likely to be for a long continued period of indefinite duration, dependent on others for significantly more assistance in attending to the child’s personal needs and care when compared to children of the same age.
Medical expenses tax credit
This applies to individuals who have significant medical expenses for themselves or their dependents. This is an income tax credit which is claimed when filing your current year tax return.
Programs and services
Big Brothers and Big Sisters of Canada
Each Big Brother/Big Sister agency provides direct service to children by matching adults and children in quality mentoring relationships. Agency staff members are experts at screening volunteers and matching them with a child having similar interests.
Easter Seals Canada
Since 1922, Easter Seals has been leading the way to opportunities for Canadians with disabilities. Easter Seals operates as a network of provincially licensed members that deliver programs and services to Canadians with physical disabilities in their community.
Immune Deficiency Foundation (IDF)
This is a national non-profit health organization dedicated to improving the diagnosis and treatment of primary immune deficiency diseases through research and education. IDF is governed by a Board of Trustees, has an active Medical Advisory Committee comprised of prominent clinical immunologists, a nationwide volunteer support network, and a dedicated professional staff.
Jeffrey Modell Foundation—Friends of John for Life Kids Wish Fund
Friends of John for Life Kids Wish Fund is a special “set aside” fund by the Jeffrey Modell Foundation. The fund is designed simply to bring joy and happiness to the lives of kids with immune deficiencies. The fund sponsors tickets for sporting events, concerts, the theatre, days at the zoo, the circus and more. These funds are not for research, doctors, or administration.
Jordan’s Principle
Jordan’s Principle helps First Nations children living in Canada to access products, services, and supports that they need. Funding can help with a wide range of health, social, and educational needs
Make-A-Wish Canada
Children’s Wish/Make A Wish have merged as Make-A-Wish Canada. Their mission is to grant the wishes of children with life-threatening medical conditions. Their goal is to ensure that all experiences create lifelong memories for the wish child and believe that each wish experience should be as unique and special as the child who wished for it.
Children may only have ONE wish either through Make-A-Wish Canada or Starlight Children’s Foundation.
Medic Alert Foundation of Canada
Canada Medic Alert Foundation offers free medic alert bracelets to children across Canada
. No Child Without includes a free medical identification bracelet and electronic health record with 24/7 access so that critical health information is quickly available during a medical emergency. MedicAlert memberships are for students (from age 4 to their 14th birthday) in select schools. (
www.nochildwithout.ca),
Membership Assistance Program ensures that any person with potentially life-threatening medical conditions can have access to services offered by MedicAlert, regardless of his/her ability to pay.
National Organization for Rare Disorders (NORD)
This is a federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Primary Immunodeficiency Resource Center
This website is designed to be a central resource on primary immunodeficiency. Its goal is to allow researchers, scientists, physicians, government, industry, patients and their families to be able to access this information quickly, efficiently, and seamlessly.
Shine Through the Rain Foundation
This foundation helps families who have a child with a life-threatening illness.
The Rainy Day Fund provides emergency payments directly to the utility companies and landlords, as well as grocery gift cards & hospital transportation and parking costs. Shine Through The Rain also reviews special requests for consideration above and beyond the scope of services already covered.
Songs of Love
Songs of Love is a non-profit organization that provides personalized songs for children and young adults with a life threatening or chronic illness.
Starlight Children’s Foundation Canada
Starlight Children’s Foundation is a non-profit organization dedicated to making a world of difference for seriously ill children and their families. Starlight offers an array of in-hospital, out-patient, school, and home-based programs and services that help to brighten the lives of children and families facing serious illnesses.
Children may only have ONE wish either through Make-A-Wish Canada, or Starlight Children’s Foundation.
Immunodeficiency Canada
Emergency financial assistance
The Alastair Fund provides funding to families dealing with financial strain due to illness from a primary immunodeficiency. It is available to families with a child registered as a patient at: Alberta’s Children’s Hospital, British Columbia’s Children’s Hospital, Montreal’s Children’s Hospital, and Toronto Hospital for Sick Children. Families can access financial assistance for transportation, overnight stays, food, parking, and other critical needs. Families should talk to the Hospital Social Work Department to access this fund.
Publications
Immunodeficiency Canada strives to provide information that is relevant and up to date. Some materials are available in both English and French. Many materials are downloadable or print copies may be requested. Resources Guide for individuals and families affected by primary immunodeficiency include:
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What is primary immunodeficiency?
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Newsletters (current and past issues)
Social media
Individuals are invited to join others affected by primary immunodeficiency and stay up to date through social media. Look for Immunodeficiency Canada on Facebook, LinkedIn, and the YouTube Channel.
Social events
Immunodeficiency Canada sponsors and hosts events for families, adults, teens, and children to help break the isolation many individuals and families feel and build networks of mutual support. Kids’ picnics have been held in Montreal, Toronto, and Calgary organized in partnership through local health care facilities. In the Greater Toronto Area, meet and greet evenings for adults and fun-filled events for teens are organized each year.