Getting Support for Parents, Children, and Youth

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 with 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.

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Resources for Younger Children

No Child Without - Canadian MedicAlert Foundation:Expand No Child Without - Canadian MedicAlert Foundation: Section

The MedicAlert Foundation Canada is a charitable organization that offers MedicAlert memberships through the No Child Without program in select Canadian schools. Through this program, memberships are offered to students aged 4 to 14 for free.

Who is Eligible?

To qualify:

  • 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?

Currently they are active in 240 school boards representing 6128 schools across Canada.

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, the 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

The Jennifer Ashleigh Children’s Charity is a registered Canadian charitable organization. Its goal is to provide partial financial assistance to help improve the quality of life for seriously ill children and their families. Their contributions can go towards expenses such as funding for hospital and household costs, specialized care, medical treatments, and therapies.

Who is Eligible?

To be eligible for assistance, the following requirements must be met:

    • 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
There is a specific list of what the Jennifer Ashleigh Children’s Charity is able to provide aid for, which can be found along with further details and the application form.

What else?
They have been able to assist many children throughout the years, such as a 9-year-old boy with epilepsy, whose family received assistance with the costs for occupational therapy and dietary expenses.

For more information, you can visit their website.

Special Services at Home Program:Expand Special Services at Home Program: Section

The Special Services at Home (SSH) program’s purpose is to aid families who are caring for a child with a developmental or physical disability by helping to pay for special services, as long as the child is not getting help from another residential program.

Who is Eligible?
You may be able to receive help if:

    • 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
To apply for the SSH program:

      • 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

What else?
There are a variety of resources the program can help families access, such as hiring someone to help the child learn new skills or to provide respite care.

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

The Government of Ontario can provide some financial assistance to parents/guardians caring for children with severe disabilities.

Who is Eligible?
You may be able to get help if all of the following apply to your situation:

    • Your child is under 18 years of age
    • Your child lives at home
    • Your child has a severe disability

How to Apply
To apply:

    • 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?
To apply and qualify, you may need to make a list of the extra expenses you must pay for such as meal and travel costs, special learning equipment, and uncovered medication costs.

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:

    • 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

Easter Seals Ontario is a registered charity that provides programs and services to children and youth with physical disabilities. There is a wide variety of things that they do, including: providing financial assistance, running a summer camp, scholarships, awareness and public education, parent resource information, and protecting the rights of students with special needs.

Who is Eligible?
You may be eligible to register with Easter Seals Ontario if the following applies:

    • 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
You can download and fill out their form on their website.

What else?
In terms of financial assistance, Easter Seals can provide up to $3,000 per year, per child to help purchase essential mobility equipment such as wheelchairs, walkers, ramps, or lifts.

For further information on their other services, you can visit their website.

Planned Lifetime Advocacy Network:Expand Planned Lifetime Advocacy Network: Section

The Planned Lifetime Advocacy Network (PLAN) is an organization that exists to help families plan for the future of a loved one with a disability. It is involved in the Registered Disability Savings Plan (RDSP) and it also offers various supports to paying members. PLAN also has some free, public services such as workshops on will, trust, and estate planning, as well as online courses on how to build personal support networks.

Special education in Ontario:Expand Special education in Ontario: Section

A child who has epilepsy could experience additional challenges in education and they may require special educational services. A special education program will likely be guided by an Individual Education Plan (IEP) which would follow an Identification, Placement, and Review Committee (IPRC) that identifies “exceptional students” who qualify for an IEP. The school board’s Special Education Appeal Board plays a key part in this process as its recommendation will either support the IPRC decision or provide an alternative instead. The school board’s Special Education Advisory Committee (SEAC) may also be an important resource to you and your child. Consult your child’s teacher and principal about requesting an IPRC meeting for your child.

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:
  • You can visit the Ministry of Education’s page here
  • People for Education has a webpage about the SEAC here
  • Check the website for the school board of your child’s school for more detailed information

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

Here are some links to other webpages that provide information geared towards teens and youth.

Epilepsy Foundation
This section, written by the Epilepsy Foundation, has information about epilepsy geared towards teens and youth about school, relationships, driving, and much more.

About Kids Health
About Kids Health is published by SickKids and has a lot of information about different health challenges. This is their page focused on teenagers who have epilepsy.

Girls With Nerve
Girls with Nerve is a website created by Ibis Reproductive Health, an international non-profit organization focused on women’s reproductive autonomy, health, and choices. This site is dedicated to providing sexual health information tailored to young women with epilepsy as well as sharing stories of those women living with epilepsy.

Resources for Teens & Young Adults with Disabilities

OBCL Epilepsy Scholarship Award:Expand OBCL Epilepsy Scholarship Award: Section

The OBCL Epilepsy Scholarship offers a select number of $1,000 scholarships to students in Ontario who are living with epilepsy.

Who is eligible?
You may be eligible for an OBCL scholarship if you meet the following criteria:

  • 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
You can find the application on our website, linked on this page. Print it out, complete it, and send it to our office to apply. You can also e-mail your completed application to us.

What else?
The scholarships have been provided since 2006, supported by Lawton Osler of Osler Business Consulting Ltd.

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

With this grant, eligible students may receive $2,000 per academic year to help with the cost of books, tuition, and living accommodations.

Who is eligible?
You may be eligible if:

  • 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
Contact your local student financial aid office at your post-secondary institution.

What else?
You can get this grant for each year of your studies as long as you continue to meet the eligibility requirements; the amount is also fixed so you will always get $2,000 no matter what your assessed need is.

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

Passport is a program that aims to help adults with a developmental disability to participate in their communities, as well as to help give caregivers of those individuals a break from their responsibilities.

Who is eligible?
To be eligible, the following must apply to the interested individual:

  • 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
Applications are handled by Developmental Services Ontario (DSO). You can locate and contact your nearest DSO location here. The DSO also includes a detailed look at the application process.

What else?
The Special Services at Home program used to also cover adults with a developmental disability; however, it has since been “merged” with Passport. This may serve as a program you may be able to transition your child into.

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

As a young adult there is probably a lot of change going on in your life. Moving into post-secondary education in particular is full of new challenges and adjustments in itself – and especially so for students who might require additional accommodation and/or other resources. Here are some links to information that maybe helpful if you’re a student transitioning to post-secondary and/or if you’re seeking accommodations in your education.

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.