A diagnosis of CDKL5 Deficiency Disorder can feel overwhelming. Across Canada, there are national and provincial/territorial 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.
Jordan’s Principle – Jordan’s Principle is a human rights principle largely defined by the Canadian Human Rights Tribunal (CHRT) to make sure that First Nations children do not face gaps or delays in accessing government services and are not denied government services because of their identity as First Nations children. Examples of requests through Jordan’s Principle include: speech therapy, educational supports, medical equipment, and mental health services.
Non-Insured Health Benefits (NIHB) program – Provides registered First Nations and recognized Inuit with coverage for a specified, nationally consistent range of health benefits not otherwise covered through provincial or territorial health insurance, private insurance plans, or other publicly-funded plans or programs.
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.
Neil Squire Society – Creates affordable assistive technology devices that give people with disabilities greater control over their lives. One of their programs, Makers Making Changes, is focused on helping individuals get the assistive technology they need built by volunteers.
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
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.
For a comprehensive list of provincial government programs, please check out the CanChild resource page for Alberta
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.
For a comprehensive list of provincial government programs, please check out the CanChild resource page for British Columbia
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.
Community Living Manitoba – Community Living Manitoba is a provincial network of 11 Local Branches working together with partners, families and governments. They seek approaches to support the empowerment of people with intellectual disabilities in all aspects of their lives.
Inclusion Winnipeg – A registered charity which dedicated to making life better for children and adults living with intellectual disabilities by connecting people, assisting their families to navigate systems and leading the way in advancing their human rights.
Manitoba Possible – Manitoba Possible (formerly Society for Manitobans with Disabilities) provides a wide range of programs and services to Manitobans with disabilities, their families, and their communities. They offer 15 program areas serving children, youth, and adults with disabilities across three Winnipeg locations and seven regional offices throughout Manitoba.
Open Access Resource Centre (OARC) – This program focuses on supporting children who benefit from a communication device. With ongoing operational support from the Government of Manitoba – Department of Families, OARC is able to help individuals receive long-term systems as well as providing the supports needed for successful implementation of a device as a communication tool.
Parking Permit Program – The Parking Permit Program is regulated by Manitoba Transportation & Infrastructure and administered by Manitoba Possible. A parking permit costs $15/
For a comprehensive list of provincial government programs, please check out the CanChild resource page for Manitoba
New Brunswick
Disability Support Program – Provides personalized, flexible supports for adults with disabilities to increase their independence and connection to the community.
Family Supports for Children with Disabilities (FSCD) – provides financial support to parents and guardians to help pay for the extraordinary costs of caring for a child with a disability. Examples include medical equipment, medical transportation, incontinence supplies, and home support services.
Inclusion NB – Their purpose has been to empower New Brunswickers with intellectual disabilities and their families. They have several programs for family support and inclusion, and have developed a fantastic newcomer guide to local disability resources.
Prescription Drug Plans – Support for New Brunswickers who don’t have coverage to help with the cost of prescription drugs.
Vehicle Retrofit Program – This program is operated by the New Brunswick Department of Transportation and may provide funding to help pay for the cost of supplying and installing “eligible retrofitting and accessibility features for vehicles.” The program can cover up to 80 per cent of the cost of eligible accessibility features, up to a maximum of $8,000.
For a comprehensive list of provincial government programs, please check out the CanChild resource page for New Brunswick
Newfoundland and Labrador
Accessible Vehicle Funding – The program supports individuals or families to adapt personal vehicles for accessibility. This could include installation of hand controls or modifying vans to be equipped with lifts and ramps.
The Coalition of Persons with Disabilities Newfoundland and Labrado (CPD NL) – A provincial, cross-disability organization that educates and advises community stakeholders interested in advancing the status of persons with disabilities.
Direct Home Services Program (DHSP) – The direct home services program (DHSP) is a family-centered, home-based early intervention program for children who are at risk of having, or who have, a developmental delay, available at any point between birth and the beginning of school.
InclusionNL – Provides support to government, businesses and organizations; supports making spaces and events inclusive. Includes the Disability Resource Centre which provides supports, services, and information to businesses in Newfoundland and Labrador on accessibility, inclusion, disability confidence, and inclusive employment.
L’Arche Avalon – L’Arche Avalon is one of 30 L’Arche communities in Canada sharing knowledge and resources with over 180 L’Arche communities around the world. Their mission is to organize activities specifically involving our core members (those with intellectual disabilities in L’Arche communities).
Linda’s Equipment Crossing Program – A program by Easter Seals Newfoundland & Labrador that provides free used assistive devices and adapted equipment to people who need them.
Prescription Drug Program (NLPDP) – The Newfoundland and Labrador Prescription Drug Program (NLPDP) provides financial assistance for the purchase of eligible prescription medications for those who reside in the province.
Rainbow Riders Therapeutic Riding Centre – The organization provides therapeutic services to improve the well-being of people with physical, developmental, and mental health needs through connection with horses.
Special Child Welfare Allowance (SCWA) – The SCWA program is available to families, assessed to be financially eligible, with a child who has a diagnosed developmental or physical disability. The program is designed to assist with additional expenses incurred by families directly due to the child’s disability.
The Vera Perlin Society – The mission of The Vera Perlin Society is to secure and/or provide quality service and support for all individuals with intellectual disabilities and their families in St. John’s and surrounding areas, enabling them to participate in all areas of community living.
For a comprehensive list of provincial government programs, please check out the CanChild resource page for Newfoundland and Labrador
Northwest Territories
Caregivers Guide – A guide developed by the Government of the Northwest Territories Department of Health and Social Services, intended as a practical resource for those caring for family, friends or neighbors.
Extended Health Benefits – The Government of the Northwest Territories (GNWT) offers Extended Health Benefits (EHB), a public benefits plan, which helps eligible residents with the cost of non-insured medical needs not covered by the NWT Health Care Plan.
Inclusion NWT – Provides support people with intellectual disabilities, and their families, across their lifetime. Offer several programs, such as supportive living and respite.
Mobility Modifications – Funding is available for homeowners to improve the accessibility of homes for people with a disability.
NWT Disabilities Council – Operates programs that support the self-determination of people with disabilities throughout the territory, including accessible parking permit, community respite, and early childhood intervention.
For a comprehensive list of territorial government programs, please check out the CanChild resource page for the Northwest Territories
Nova Scotia
Direct Family Support for Children (DFSC) – Direct Family Support for Children (DFSC) and Enhanced Family Support for Children (EFSC) provide funding to enable families to support their child with a disability at home. DFSC and EFSC provide funding for the purchase of respite services to assist with scheduled breaks for family care givers. An enhanced funding component may be available for children and families who meet EFSC eligibility criteria.
Disability Support Program – The Disability Support Program (DSP) services children, youth and adults with intellectual disabilities, long-term mental illness and physical disabilities in a range of community supported living options and day programs.
Inclusion Nova Scotia – A provincial not-for-profit organization committed to ensuring that individuals with intellectual disabilities and their families have the support they require to live full and inclusive lives in community.
Wheelchair Recycling Program – The children’s wheelchair recycling program provides wheelchairs to children who need a chair for the first time or who have outgrown their current chair.
For a comprehensive list of provincial government programs, please check out the CanChild resource page for Nova Scotia
Nunavut
Nunavummi Disabilities Makinnasuaqtiit Society (NMDS) – Provides advocacy, employment support, training, and accessibility services to help individuals, families, and organizations.
For a comprehensive list of territorial government programs, please check out the CanChild resource page for Nunavat
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.
For a comprehensive list of provincial government programs, please check out the CanChild resource page for Ontario
Prince Edward Island
AccessAbility Supports | Government of Prince Edward Island – The program supports Islanders with physical, intellectual, neurological, sensory and/or mental disabilities who experience substantial impairments in their activities of daily living. There are 5 areas of support: personal supports, housing supports, community supports, caregiver supports, and financial supports.
Resourceabilities – Dedicated to promoting the full participation and inclusion of people with disabilities in Island society.
For a comprehensive list of provincial government programs, please check out the CanChild resource page for Prince Edward Island
Quebec
Accessible Parking Permit – Anyone with a mobility impairment – regardless of whether or not that person is a Québec resident – may obtain an accessible parking permit if they are the driver or a passenger of a vehicle.
Home Adaptation Program – This program of the Société d’habitation du Québec provides financial assistance for work to adapt the homes of people with disabilities to enable them to perform their essential activities of daily living and to help them stay at home.
Fondation Papillon – A non-profit organization that is a hub of resources and support for individuals with disabilities, their families, and community stakeholders. They offer a range of adapted services aimed at helping people with special needs reach their full potential while also addressing the needs of their loved ones.
Supplement for Handicapped Children – Financial assistance for parents who care for a child under age 18 who has an impairment or a mental function disability that significantly limits him or her in carrying out his or her life habits compared with what is expected for a child his or her age.
Supplement for Handicapped Children Requiring Exceptional Care – The Supplement for Handicapped Children Requiring Exceptional Care is an amount that is added to the Supplement for Handicapped Children. It is intended to increase the financial support granted to parents to help them provide for a child who is seriously ill or has very severe disabilities.
For a comprehensive list of provincial government programs, please check out the CanChild resource page for Quebec
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.
For a comprehensive list of provincial government programs, please check out the CanChild resource page for Saskatchewan
Yukon
Children Disability Services – A territorial government program that provides funding, resources, and social work support to families of children with disabilities.
Chronic Disease and Disability Benefits – This program provides coverage for Yukon residents who have a chronic disease or disability and are under the age of 65. Examples of coverage: medical equipment/supplies, orthotics, lowest cost alternative prescriptions.
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.
For a comprehensive list of territorial government programs, please check out the CanChild resource page for the Yukon
Other Resources
International Foundation for CDKL5 Research (IFCR) Gene Therapy Guide