A diagnosis of CDKL5 Deficiency Disorder can feel overwhelming. Across Canada, there are national and provincial resources available to support you on your journey. We have created this resource directory as a starting point to help you connect with available supports. As this is an evolving resource, we welcome your support to help us expand and improve it.
If you have suggestions, please email Suchi Jobanputra at sjobanputra@cdkl5canada.ca.
Canada-Wide Resources
Federal Programs
Disability Tax Credit (DTC) – The purpose of the Disability Tax Credit is to provide for greater tax equity by allowing some relief for the costs of disability, since these are unavoidable, additional expenses that other taxpayers don’t have to face. Once you qualify for the disability tax credit, you can also benefit from the registered disability savings plan and the child disability benefit.
Home Accessibility Tax Credit – This is a non-refundable tax credit designed to help homeowners cover the costs of renovations that make their home more accessible and safer. You may be eligible to claim an amount for home accessibility expenses if you incurred eligible expenses for a qualifying renovation that improves accessibility or reduces the risk of injury in an eligible dwelling.
Registered Disability Savings Plan (RDSP) – A registered disability savings plan (RDSP) is a savings plan that is intended to help parents and others save for the long term financial security of a person who is eligible for the disability tax credit (DTC above). The Canada Disability Savings Grant is a matching grant. That means that the Government also pays into your RDSP to help you save. The Government gives matching grants of up to 300 percent, depending on the beneficiary’s family income and contribution. The maximum Grant amount is $4,125 per year, with a limit of $70,000 over your lifetime.
National Organizations
Easter Seals Access 2 Program – This is a national program that allows people with permanent disabilities to receive either free or significantly discounted admission for their support person at member movie theatres, cultural attractions and recreation facilities across Canada.
Easter Seals in Your Province – There are provincial chapters of Easter Seals across the country. Easter Seals Canada runs national awareness campaigns and raises critical funding for the transformative programs and services that are offered by Easter Seals provincial member organizations at the local level. Programs/services may differ depending on your location.
Rotary Clubs – Rotary in Canada is a network of over 700 local community service clubs connected by Rotary International. Your local rotary club may be able to provide support such as funding specialized medical equipment, building inclusive community infrastructure, etc. Because the complete list contains hundreds of individual local chapters, the best way to find a specific group is by checking regional districts.
Vision Loss Rehabilitation Canada – This is a national program that provides a range of services to help individuals with vision loss (including Cortical Visual Impairment) lead more independent, active lives.
Provincial/Territorial Resources
Alberta
For a comprehensive list of provincial supports, please check out the CanChild resource page for Alberta
Alberta Aids for Daily Living (AADL) – AADL is a provincial program that helps Albertans with a long-term disability, chronic or terminal illness to pay for basic medical equipment and supplies (including wheelchairs, incontinence supplies, bathing seats, commodes, lifts, communication devices, etc).
Assured Income for the Severely Handicapped (AISH) – Financial and health benefits for eligible Albertans (adults) with a permanent medical condition that prevents them from earning a living.
Brady’s Foundation – This is a local charitable organization whose mission it is to provide support and reduce the financial burden on families caring for children with rare, life-limiting diseases in order to help these children receive the best possible care during their difficult journey. Families within Alberta can request support for funding of medication, equipment, infrastructure, etc.
Children’s Homecare – Alberta Health Services – This program supports care for medically complex children at home. Care team may include a physical therapist, occupational therapist, speech-language pathologist, nurse, social worker, or respiratory therapist. Please call Continuing Care Access for more information at 780-496-1300.
Family Supports for Children with Disabilities (FSCD) – The FSCD program is a provincial program that works with eligible families to provide supports and services based on each child and family’s needs. Supports may include respite. mileage/parking coverage for medical appointments, special clothing allowance, coverage for counselling, specialized services (therapies), and child care supports.
Persons with Developmental Disabilities (PDD) – This provincial program helps adults with developmental disabilities to live as independently as possible in their community.
Parking Placard for People with Disabilities – A parking placard allows a person to use disabled parking stalls that are closer to entrances.
Residential Access Modification Program (RAMP) – This program provides grants to low-income homeowners or tenants with mobility challenges to enable them to modify their homes. Eligible individuals can receive up to $7,500 per person each benefit year and up to $15,000 per person within 10 years.
Variety Alberta – Provide essentials equipment, adaptive technologies, and inclusive experiences that transform lives and build stronger, more inclusive communities.
British Columbia
For a comprehensive list of provincial supports, please check out the CanChild resource page for British Columbia
At Home Program – The At Home Program is designed to support children and youth with severe disabilities and complex health care needs. The program provides a range of medical equipment and services for eligible children.
BC Children and Youth Disability Benefit – Provides direct funding for children and youth (ages 0 to 19) who have lifelong disability resulting in significant and/or complex support needs.
CKNW Kids’ Fund – CKNW Kids’ Fund accepts grant applications from both individual families and organizations in BC that are focused on children’s programs and special projects.
Family Support Services – This program provides respite services and support services to families with children with intellectual disabilities.
Gizeh Shriners of British Columbia and Yukon – Provides support for medical treatment, and accommodation/travel related to treatment. Their “Shriners in Your Community” Fund provides eligible children in British Columbia and Yukon with much-needed and medically necessary equipment to improve their quality of life.
Variety BC – Variety BC steps in where health care can’t, filling gaps that are not covered by government programs, health care or private health plans. We specifically help lower income families of children 0-19 years of age with disabilities and complex health needs by providing funding equipment, therapies, etc.
Manitoba
Children’s DisABILITY Services – This program supports families who are raising a child (or children) with developmental and physical disabilities, to meet some of the additional needs they may have. It offers families a variety of resources and supports to assist them to care for their children at home in their own communities, where children grow and thrive.
For a comprehensive list of provincial programs, please check out the CanChild resource page for Manitoba
New Brunswick
For a comprehensive list of provincial programs, please check out the CanChild resource page for New Brunswick
Newfoundland and Labrador
For a comprehensive list of provincial programs, please check out the CanChild resource page for Newfoundland and Labrador
Northwest Territories
For a comprehensive list of provincial supports, please check out the CanChild resource page for the Northwest Territories
Nova Scotia
For a comprehensive list of provincial supports, please check out the CanChild resource page for Nova Scotia
Nunavut
For a comprehensive list of provincial supports, please check out the CanChild resource page for Nunavat
Ontario
For a comprehensive list of provincial programs, please check out the CanChild resource page for Ontario
Accessible parking Permit – The accessible parking permit can be applied for by mail, in-person, or online, and must be certified by a regulated health professional listed on the website. There is no charge to apply.
Assistance for Children with Severe Disabilities (ACSD) – This program provides financial support for eligible families to cover some of the extra costs of caring for a child who has a severe disability. Eligible parents and guardians can receive between $25 and $678 a month to help with disability-related costs.
Assistive Devices Program – ADP is a program offered by the government which helps pay for equipment and supplies. Your child’s Occupational Therapist can apply on your behalf.
Children’s Rehabilitation Services – Information about access to preschool and school-age rehab services (speech-language pathology, occupational therapy, physical therapy) in Ontario.
Community Living Ontario – A non-profit provincial association that has been advocating for people who have an intellectual disability and their families.
Enhanced Respite – Enhanced Respite for Medically Fragile and/or Technology Dependent Children will give eligible families back the cost of covered respite services or supports when you make a claim.
Special Services at Home – helps families taking care of a child with a developmental and/or physical disability. It provides funding to buy services and supports that help parents with caring for their child, or that support the child to join activities at home and in the community.
Prince Edward Island
For a comprehensive list of provincial supports, please check out the CanChild resource page for Prince Edward Island
Quebec
For a comprehensive list of provincial supports, please check out the CanChild resource page for Quebec
Saskatchewan
For a comprehensive list of provincial supports, please check out the CanChild resource page for Saskatchewan
Community Living Service Delivery (CLSD) – Provides a respite benefit for eligible families caring for a child with an intellectual disability.
Home Repair Program – Provides financial assistance to homeowners or rental property owners with low incomes to make a home more accessible for a person with a housing-related disability.
Inclusion Saskatchewan – A non-profit that provides individual advocacy, family networks, and peer support to ensure people with developmental disabilities, autism, or neurodivergence are fully included in community life, education, and the workplace.
Saskabilities – A registered Canadian charity and non-profit organization dedicated to supporting individuals experiencing disability and building inclusive communities across Saskatchewan; it provides rehabilitation, vocational training, specialized equipment, and accessible housing or recreation programs (*includes application for disability parking placard).
Saskatchewan Aids to Daily Living – A provincial program that provides assistance to people with physical disabilities to live a more active and independent lifestyle. It also helps people in the management of certain chronic health conditions.
Yukon
For a comprehensive list of provincial supports, please check out the CanChild resource page for the Yukon
Gizeh Shriners of British Columbia and Yukon – Provides support for medical treatment, and accommodation/travel related to treatment. Their “Shriners in Your Community” Fund provides eligible children in British Columbia and Yukon with much-needed and medically necessary equipment to improve their quality of life.
Other Resources
International Foundation for CDKL5 Research (IFCR) Gene Therapy Guide