Many disorders such as epilepsy don’t discriminate based on any factors, including age. Sometimes even the youngest people are affected by health conditions, which can in turn be challenging for the entire family as well. However, there are a variety of charities, organizations, and programs in Ontario that may be able to help with your family’s needs.
Epilepsy is a spectrum disorder
Epilepsy is an umbrella term, and under the umbrella of “epilepsy” there is a wide spectrum of epilepsy disorders from the less severe to the extremely disabling. Most programs that offer disability support or assistance assess a person’s eligibility based on the way that epilepsy impacts their daily life, not simply on the diagnosis of epilepsy.
Epilepsy is an episodic condition and may be associated chronic conditions
Epilepsy is an episodic condition and the effects it has on a person’s life may come and go from day-to-day. As you consider whether you meet the criteria of a “person with a disability” within a program, think about how your epilepsy affects your life on the worst days and include that information in your application. You should also describe how long your episodes of impaired function may last, how frequently they occur, and how long it takes you to recover. If your epilepsy disorder is associated with other persistent or long-lasting features that impair your ability to function – such as mood changes or effects on your thinking abilities – include a description of these as well and how they impact your daily life.
Skip to:
- Resources for younger children with disabilities
- Resources for teens and young adults
- Resources for teens and young adults with disabilities
Resources for Younger Children
No Child Without - Canadian MedicAlert Foundation:Expand No Child Without - Canadian MedicAlert Foundation: Section
Who is Eligible?
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- Your child must be between 4 and 14 (after 14, you can continue in the program for an annual fee offered at a 40% discount until your child turns 18, at which point other options are available)
- Your child must attend a school participating in the program
How to Apply
Visit this webpage and find the school board your child’s school belongs to. Check to see if your child’s school is on the list. If so, you should be able to get a No Child Without brochure from their school and fill out the directions on the back of it.
There are a several measures that can be taken if your child’s school is not participating. You may need to check if the school is on a waiting list, or if they are aware of the program at all. For further info, you can visit the No Child Without website.
What else?
What is MedicAlert?
MedicAlert is identification that goes with your child (often in the form of a bracelet or necklace) that ensures important information can be accurately and clearly communicated anytime and anywhere. It is engraved with your child’s most urgent medical needs, their special MedicAlert ID number, and a 24-hour emergency hotline that first responders can call in case of an emergency. Your child’s membership card will list their medications as well as emergency contacts and physicians. You can also update your child’s medical information anytime through their secure online service.
Most importantly, all personal emergency contacts will be notified at the time of an emergency and follow-up with parents will be made after the emergency call is made to the 24-hour hotline.
MedicAlert keeps your child’s medical record confidential and stored in a secure, centralized database; privacy and confidentiality of all members’ information is ensured at all times.
For further information, you can visit the No Child Without website.
Camps:Expand Camps: Section
For many children, camp is an exciting part of summer that provides opportunities to make new friends, develop new skills, and simply have fun. While children with epilepsy may face some unique challenges, they don’t have to miss out on having a great camp experience.
Epilepsy Ontario's Summerfest
Epilepsy Ontario runs its own camp for children between 6 and 15 who have epilepsy. At Camp Couchiching in Longford Mills, 90 minutes outside of Toronto, campers can experience many fun and exciting outdoor activities such as rock climbing and canoeing. There are also nurses on site at all times to ensure that your child is safe and cared for while they have fun.
For more information, including how to sign up, please see our Summerfest page.
To find more information about other camps, you can visit the Ontario Camps Association and you may also want to consult their list of special needs camps.
Resources for Children with Disabilities
Jennifer Ashleigh Children’s Charity:Expand Jennifer Ashleigh Children’s Charity: Section
Who is Eligible?
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- You need financial aid due to costs directly related to your child’s illness or disability
- Your child has been diagnosed by a Canadian medical practitioner with a serious illness or permanent disability
- Your child is 21 years old or younger
- You and your child are Canadian Citizens or Landed Immigrants as well as permanent residents of Ontario
- Your family’s combined gross household income must be $60,000 or less, with the exception being if you have more than one child with special needs
- Your family must have also used up all other financial resources available to you, including personal resources, government funding, service agencies, and/or non-profit organizations
How to Apply
What else?
For more information, you can visit their website.
Special Services at Home Program:Expand Special Services at Home Program: Section
Who is Eligible?
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- You and your child live in Ontario
- Your child needs more support than most families can provide
- Your child lives at home with your family OR if they are not living at home with their family, they are not being helped by other residential services
How to Apply
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- Download and complete the application form provides on the website
- Attach a medical statement/psychological assessment describing your child’s disability; explain why you need the services and how much it will cost
- Mail in the completed form and assessment to your nearest Regional Office
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What else?
The amount of funding your family can receive depends on the type and amount of service your child needs, what other help is available, and what kind of support your family is already receiving.
For further information, you can visit the SSH webpage.
Assistance for Children with Severe Disabilities:Expand Assistance for Children with Severe Disabilities: Section
Who is Eligible?
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- Your child is under 18 years of age
- Your child lives at home
- Your child has a severe disability
How to Apply
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- Contact your local regional office and ask for an application form
- Complete and return the form
- A Special Agreements Officer will review and contact you if needed
- You will receive a letter informing you whether or not you qualify and, if so, how much you will receive
What else?
Parents can get between $25 and $440 a month to help with costs such as travel to doctors and hospitals, special shoes and clothes, parental relief, wheelchair repairs, assistive devices, prescription drugs, dental care, and many others. The amount you can receive will depend on:
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- Your family’s income
- The severity of your child’s disability
- The kind of difficulties your child has when walking, communicating, feeding himself, and/or bathing himself
- The extraordinary costs related to disability
For more information you can refer to the program’s website.
Easter Seals Ontario:Expand Easter Seals Ontario: Section
Who is Eligible?
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- Your child is under 19
- Your child is a legal resident of Ontario
- Your child has a long-term physical disability that restricts independent mobility and has an impact on their activities of daily living
- Your child must use a mobility device such as a walker or wheelchair in order to be mobile
How to Apply
What else?
For further information on their other services, you can visit their website.
Planned Lifetime Advocacy Network:Expand Planned Lifetime Advocacy Network: Section
Special education in Ontario:Expand Special education in Ontario: Section
You can read more about special education here, on our website.
To learn more about IEPs:
- You can visit the Ministry of Education’s resource guide
- You can see what example IEPs look like on this page
- The Learning Disabilities Association of Ontario has a guide to IEPs and IPRC meetings, which you can read by clicking here; they also offer a free online workshop about IEPs which you can read more about here
- The Ontario Teacher’s Federation has a website on special education which you can find here
- Community Living Ontario has written “A Student’s Guide to IEP”
To learn more about IPRC:
- You can visit the Ministry of Education’s webpage
- The Ontario Teacher’s Federation has a webpage on the IPRC which you can read here
- Community Living Ontario has a page on the IPRC process you can find here
- People for Education has written information about what an IPRC meeting is, which you can read here
- The York Region School board has produced a parent guide that includes general information about the IPRC, which you can read about here. For information that is most relevant to your child, consult their teacher or try visiting the website of their respective school board.
To learn more about the Special Education Advisory Committee:
Resources for Teens & Young Adults
SickKids Good 2 Go Transition Program:Expand SickKids Good 2 Go Transition Program: Section
The SickKids Good 2 Go program provides information, tools, and strategies to assist children and their families in graduating from pediatric health care to the adult system. While your child may never have gone to SickKids, there is a variety of information that you may find helpful in this transition period for your entire family.
For example, MyHealth Passport, a wallet-sized card that lists a person’s important medical information, may be useful to you or your child. You can read more about it here and create your own for free here. Similarly, there is also the MyEducation Passport which can present important information to help teach others about a person’s unique way of learning. You can read more about it here and create one for free here.
There are also a variety of links to other resources that may be helpful to your family which you can find on the program’s website.
Information for teens and youth:Expand Information for teens and youth: Section
Epilepsy Foundation
About Kids Health
Girls With Nerve
Resources for Teens & Young Adults with Disabilities
OBCL Epilepsy Scholarship Award:Expand OBCL Epilepsy Scholarship Award: Section
Who is eligible?
- You’re a Canadian citizen or Permanent Resident
- You’re currently under an Ontario physician’s care for epilepsy
- You are between the ages of 16 and 29
How to apply
What else?
For more information, including about past recipients of the scholarship, visit our webpage about the award.
Federal grant for students with permanent disabilities:Expand Federal grant for students with permanent disabilities: Section
Who is eligible?
- You apply and qualify for a Canada Student Loan
- You attend a designated post-secondary institution either full-time or part-time
- You meet the criteria for students with permanent disabilities (you must include one of the following as proof of your disability: a medical certificate, a psycho-educational assessment, or documents that prove you’ve received federal or provincial permanent disability assistance)
How to apply
What else?
For more information, including about the Grant for Services and Equipment for Students with Permanent Disabilities, click here and here.
DisabilityAwards:Expand DisabilityAwards: Section
DisabilityAwards is a project of the National Educational Association of Disabled Students (NEADS), a registered charitable organization dedicated to empowering post-secondary students and graduates in Canada who have disabilities. This site can connect you to scholarships and provide information about government funding based on where you live, where you are going to school, what school you’re attending, and your disability.
National Educational Association of Disabled Students:Expand National Educational Association of Disabled Students: Section
National Educational Association of Disabled Students (NEADS) is a consumer-controlled charitable organization committed to post-secondary students and graduates with disabilities. Its mandate is to support full access to education and employment for their population.
They have a variety of information on education and employment, as well as other resources which can be accessed by visiting their website.
Passport Program:Expand Passport Program: Section
Who is eligible?
- He/she must be 18 years or older
- He/she must need support to participate in the community while they are in school, OR
- He/she must have left school and are living with family or independently in a supportive living arrangement (e.g., a group home)
The caregiver of a person with a disability may also be eligible for funding for the purposes of paying others to temporarily support their loved one.
How to apply
What else?
Passport funding can be used for education (e.g., recreational programs, classes at a community centre, but NOT tuition), job preparation activities, volunteer activities, and several others. For a more detailed list you can refer to the Passport tip sheet.
When you apply, keep in mind that there is an extensive wait list to go through. If you need money immediately you might want to try going to Ontario Works. During this time you’ll also need to inform DSO of any changes to names, address, phone number(s), supports, needs, and living arrangements.
Once funding is available, the family or individual can:
- Receive and manage funds directly
- Receive funds directly and use up to 10% of their total approved allocation
- Access funded services through an existing developmental services agency
For more information you can visit DSO or the Passport website.
Planning for post-secondary education - transitions and accommodations:Expand Planning for post-secondary education - transitions and accommodations: Section
Resources about transitions
This site contains a resource guide for students with disabilities in their transition to post-secondary education. It also has information about many colleges and universities around Ontario, including information about support services, financial aid, and disability services available.
The Pediatric Oncology Group of Ontario (POGO) produced a document about transitioning from high school to post-secondary education or employment. The information is might also be applicable to people with epilepsy. You can read it here.
The Ontario Ministry of Education has a section on their website about preparing for post-secondary education and training, which you can find by clicking here.
Youth2Youth, a small website created by young people with learning disabilities, has a FAQ answering some questions about post-secondary education.
The Learning Disabilities Association of Ontario has published a guide to planning a transition into post-secondary education, including samples of organized plans that you may also be interested in using. You can read it here.
Easter Seals Ontario has produced a tip sheet about transitioning to post-secondary education.
Resources about Accommodations
Alternative Education Resources for Ontario (AERO) is a provincial program that helps bring textbooks and other required materials to post-secondary students in an alternative and accessible format that they might require. You can find more about this program by clicking here.
The Ontario Human Rights Commission has information about accommodations and accessibility in education from a human rights standpoint. You can read their report containing recommendations for institutions to achieve barrier-free education for students with disabilities here. The OHRC also has a fact sheet on the main barriers of education that students with disabilities face, which you can find here.
The National Education Association of Disabled Students (NEADS) has a document about improving accessibility in post-secondary institutions; while it is not written for students, there may be information you can apply to your own situation. You can click here to read more.
The Learning Disabilities Association of Ontario has a page that lists disability services across colleges and universities in Ontario, as well as other information about topics such as scholarships and bursaries. You can find this list on this page.