Getting Support with Your Health

No two experiences with epilepsy are identical; people require different needs to different degrees. There are many resources you may be able to access in Ontario if you or someone you care about requires more support than others. Whether it’s with direct care, medication, travelling around, or all of the above, there are programs that can help people living with epilepsy get what they need, and get where they need to go.

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General Health Services, Programs, and Tools

Assistive Devices Program:Expand Assistive Devices Program: Section

The Assistive Devices Program’s (ADP) goal is to both provide consumer-focused support and funding to Ontario residents who have long-term physical disabilities, and to provide access to personalized assistive devices that are appropriate to the basic needs of individuals.

Who is Eligible?
    • You must be an Ontario resident with a valid OHIP card
    • You must have a physical disability of six months or longer
    • Your equipment must be required for your general life (meaning not just sports, work, or school)

How to Apply
    • Obtain your diagnosis from your specialist or practitioner
    • Contact a registered authorizer (you may find them in hospitals, home care agencies, or private practices) who can assess your specific needs and prescribe the right equipment
    • Get in touch with a vendor who can sell the necessary supplies to you*
      • * Note that the ADP will only help pay for equipment that is purchased from vendors registered with the program. You can look up registered vendors, by category of device, here.

What else?
Some examples of what the ADP funds are: wheelchairs/mobility aids, visual and communication aids, orthoses (braces, garments, and pumps), and many others. The ADP will pay up to 75% the cost of some equipment (e.g., artificial limbs, wheelchairs), or a fixed amount for other devices (e.g., hearing aids).

You can refer to the ADP webpage for more information.

Community Care Access Centre:Expand Community Care Access Centre: Section

Community Care Access Centre (CCAC) connects people with the care they need at home and in the community. Its focus is on optimizing the health and independence of its clients. It can provide a variety of services to people, such as home care for seniors as well as adults and children with disabilities.

Who is Eligible?
Anyone who needs some support with their health care in their home, school, or community can be eligible for CCAC services.

How to Apply
You can call your local CCAC, or a referral can be made by a doctor, nurse, community service provider, or other health care professional. You can also call on someone else’s behalf. To find your area’s CCAC agency, click here.

What else
CCAC also provides care at schools to help students who require medical and/or rehabilitative assistance to enable them to attend, learn, and participate in school routines.

For more information, you can visit the CCAC website.

Respite Services:Expand Respite Services: Section

Respite Services is an Ontario-wide resource that is funded and supported by local community agencies, the Ministry of Community and Social Services, and the Ministry of Children and Youth Services. Its purpose is to connect agencies funded by the Government of Ontario and to collaborate to develop a more dynamic respite network for children, adults, and families in communities around the province.

Who is Eligible?
Any family and other person or group of people giving constant care to someone they love can utilize the respite services on the site.

How to Apply
To use the services on this website, you can register by filling out the registration form by phone, by downloading it, or simply completing it online. Begin by selecting your community on the website.

What else?
What is respite? Respite care is short-term, temporary relief provided to caregivers and those they care for. It is important for a caregiver to take care of themselves as well as their loved one, which respite care can provide time for.

For more information, you can visit the Respite Services website.

Ontario Drug Benefit Program:Expand Ontario Drug Benefit Program: Section

The Ontario Drug Benefit (ODB) Program is run by the Government of Ontario. It can cover most of the cost of certain drugs, including 3,800 prescription drug products, some nutrition products, and some diabetic testing agents. 

Who is Eligible?
In order to qualify for this program, your doctor or another authorized prescriber must prescribe the drugs, and you must buy them from either:

a) An accredited Ontario pharmacy OR
b) An Ontario doctor who is licensed to sell prescription drug products and is linked to the Ontario Ministry’s Health Network System

You are eligible for benefits from this program if you live in Ontario, have a valid OHIP card, and at least ONE of these statements applies to you:

How to Apply
Obtaining program benefits depends on which of the eligibility statements applies to you.

If you’re a senior: On the first day of the month after you turn 65, bring your prescription and health card to your pharmacy. Tell your pharmacist that you are eligible for the ODB program.

If your drug costs are high relative to your income: You will need to complete a Trillium Drug Program application for Ontario Drug Benefits (see below).

If you live in a Long-Term Care Home or a Home for Special Care, or you’re enrolled in the Home Care System: Talk to your Community Care Access Centre representative.

If you receive social assistance: Talk to your Ministry of community and Social Services case worker.

What else?

3,800 prescriptions drugs is a lot – but the ODB does not include every drug out there. For all others, the Exceptional Access Program may cover additional drug products that are not on the ODB list.

It may be important to note that prescriptions drugs bought outside of Ontario, prescriptions bought at a doctor’s office that is not linked to the Ministry’s Health Network system, and supplies (e.g., syringes) are not covered by the ODB program.

For more information, you can visit the ODB Program website.

Trillium Drug Program:Expand Trillium Drug Program: Section

The Trillium Drug Program (TDP) helps people pay for their prescription medication when their drug costs are high relative to their income. 

Who is Eligible?
You may qualify for the TDP if you live in Ontario, have a valid OHIP card, you don’t have private health insurance (or if you do it doesn’t cover 100% of the drug costs), AND you are NOT covered under the ODB as:

    • A senior over 65
    • Someone who receives financial help through Ontario Works or the Ontario Disability Support Program
    • A resident in a long-term care home or Home for Special care OR
    • Someone who receives Home Care Services

How to Apply?
To apply, you can obtain an application kit one of three ways:

What else?
The TDP covers all drugs approved under the Ontario Drug Benefit (ODB) Program and additional ones, with approval, through the Exceptional Access Program. In the TDP you must pay a set amount of prescription drug costs each year (a “deductible”) which is based on your household income. For most people, it equals about 4% of your household’s combined net income.

For further information you can visit the TDP 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 an 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 the DSO or the Passport website.

Northern Health Travel Grant Program:Expand Northern Health Travel Grant Program: Section

The Northern Health Travel Grant Program (NHTGP) can assist people by covering some of the travel costs for residents in Northern Ontario who have to travel at least 100 km one-way to access a medical specialist or other designated health care facility that isn’t available locally. In certain cases the program can also assist people whose one-way road distance to the nearest health care facility is at least 200 km by providing an allowance of $100 per eligible trip for accommodation (e.g., hotels).

Please note: you must get an application for the program from the professional who is referring you BEFORE you travel.

Who is Eligible?
To be eligible, you must meet the following requirements:

    • You are OHIP insured on the date of your treatment and your primary residence is in the district of Algoma, Cochrane, Kenora, Manitoulin, Nipissing, Parry Sound, Rainy River, Sudbury, Timiskaming or Thunder Bay
    • The medical specialist or health care facility-based service you were referred to is under the Health Insurance Act
    • A northern physician, dentist, optometrist, chiropractor, midwife, or nurse practitioner has referred you before travel takes place
    • You are referred to one of the following:
      • A medical specialist who is certified by the Royal College of Physicians and Surgeons of Canada
      • A Winnipeg (Manitoba) physician enrolled in the Manitoba Health Specialist register who is permitted to bill as a specialist
      • A physician who holds a specialist certificate of registration from the College of Physicians and Surgeons of Ontario in a recognized medical/surgical speciality other than family/general practice
    • The nearest specialist/designated health care facility able to provide the type of care required in Ontario or Manitoba is at least 100 km from where you live

How to Apply
To apply for a grant, you can get an application form from your northern doctor, dentist, optometrist, midwife, NP, or chiropractor. You will need a referral form before you travel, which only needs to be completed every 12 months as long as you’re going to the same specialist/facility. After that, the specialist you see will need to fill out another section of the form, and you will need to keep your accommodation and receipts, as well as those for a travelling companion.

What else?
Here’s how the numbers work:

    • For travel, approved grants are paid at $0.41/km based on return road distance travel between your home and your destination. There is a deductible of 100km on your trip (meaning you must pay for 100km yourself)
      • Example: You need to travel 150 km one-way (300 km two-way).
        • The deductible is 100 km, so 200 km will be paid for by the NHTG (300 km – 100 km)
        • 200 km x 0.41 = $82.00
    • For accommodation, the program gives an allowance of $100 for each eligible treatment trip. You must submit a receipt of your expense.

 Some things to keep note of:

    • Costs such as meals and other expenses other than travel and accommodation will not be covered by this program
    • Receipts/itineraries are required if you travel by air, train, or bus (but nothing is needed if you go by personal vehicle)

For further details, you can visit the NHTGP website.

Travelling far for medical reasons:Expand Travelling far for medical reasons: Section

Ontario is very fortunate to have many specialized programs for epilepsy within the province. For some people these services will be close by, and for others it may take some travelling to get to them. Here are some tips you can keep in mind when planning and travelling to a medical facility or specialist that is far from your home.

    • Residents in Northern Ontario may be eligible for financial support with accommodation and travel costs under the Northern Health Travel Grant (see above)
    • Most hospitals will have information about nearby accommodations on the hospital website: try searching for “accommodations”
    • The Patient Relations office or Family Resource office at the hospital should have additional information about local accommodations, and can answer questions you may have – find the extension online, or call the main number and ask the switchboard to redirect you
    • The hospital may also have a Patient Handbook on their website, or they could be able to send you one
    • When booking a room at a hotel/motel – be sure to ask if there is a hospital rate for people travelling for medical reasons
    • Local service clubs or church groups may provide financial help to people and families who have to travel for medical reasons.  Contact your local Lions Club or Rotary Club, local church groups or other community groups for more information.
    • You may be able to claim travel expenses on your income taxes for a tax credit. If you plan to do so, keep a few things in mind:
      • Keep a log of any medical appointments – the date, type of appointment and distance traveled
      • Keep receipts for public transit, gas, parking, meals and accommodations
      • For more information visit the Canadian Revenue Agency website
    • If you need help with accommodations or travel, ask your doctor for a referral to a social worker at the hospital.

Quick links:

Accommodations near the University Health Network, Toronto – Toronto General, Toronto Western, Princess Margaret, and Toronto Rehab: Click Here

Accommodations near Sick Kids Hospital, Toronto: Click Here

Accommodations near St. Joseph’s Hospital, Toronto: Click Here

Accommodations near Hamilton Health Sciences, Hamilton: Click Here

Accommodations near the Kingston General Hospital, Kingston: Click Here

Accommodations near CHEO, Ottawa: Click Here

Accommodations near University Hospital, London: Click Here

Victoria Hospital, Children’s Hospital, London: Click Here

SeizureTracker:Expand SeizureTracker: Section

SeizureTracker is a free online tool for anyone who wishes to track their seizures, or the seizures that a loved one experiences. The only thing you need to do is set up an account with the site. Then, you can track seizure information (e.g., type, duration, mood, and descriptions), generate graphs of seizure activity against medications. If desired, you can share information from your online seizure diary with your physician or nurse practitioner. SeizureTracker will also allow you to select which information you want to share with your health care professional.

MedicAlert and medical identification:Expand MedicAlert and medical identification: Section

MedicAlert is a form of medical identification (usually in the form of a bracelet or necklace). It has your name, your most important medical information, your ID number with MedicAlert, and a hotline for Emergency Medical Services (EMS) to call. In the event of an emergency, their specialists get the information from the paramedics, and then inform your family of the situation. MedicAlert costs $5 a month, along with the cost of the ID itself and a $24 one-time activation fee; however they also have special offers that may be able to reduce some of these costs. Students 4 to 14, may be able to obtain MedicAlert through the No Child Without program, which you can read more about on this page.

There are also a variety of other companies who provide medical identification alone such as Lauren’s Hope (based in the US but ships internationally) and Universal Medical ID (based in Ontario).

Further alternatives that may interest you include an ICE (In Case of Emergency) Tag (based in Ontario) and free printable medical ID cards from MedIDs.com.

Seizure alert/response dogs:Expand Seizure alert/response dogs: Section

Seizure alert (or seizure assist) dogs are special service animals trained to protect people who have epilepsy if they have a seizure in public. They may be capable of many things such as staying close to a person, fetching medication or a telephone, or guiding someone away from trouble. It should be noted that dogs cannot be trained to detect seizures, but some dogs may have the intuition.

The Lions Foundation of Canada has a program where eligible individuals could be provided with seizure response dog. You can find the page on this program here, as well as the application forms you will need to complete to apply for a dog. You can also learn more about seizure dogs in general on our website here.

Epilepsy programs in Ontario:Expand Epilepsy programs in Ontario: Section

In Ontario we are fortunate to have a number of medical facilities that have specialized services such as epilepsy monitoring units. Here are some links to the various hospitals that have epilepsy clinics.

  • The University Health Network has an epilepsy clinic at the Toronto Western Hospital which you can read more about here.
  • The London Health Sciences Centre has an epilepsy program, which you can read about on this page.
  • McMaster Children’s Hospital (in Hamilton) has a paediatric epilepsy program which you can find more about on this page.
  • Hamilton Health Sciences Centre has an epilepsy clinic, which you can find more about here.
  • Children’s Hospital of Ontario (in Ottawa) has an epilepsy monitoring unit which you can read about here.
  • The Ottawa Hospital has a neurosciences clinic which you can find more about on their website.
  • St. Michael’s (in Toronto) has a neurology & musculoskeletal program that looks a epilepsy; read more here.
  • SickKids (in Toronto) has a Neurologsy Epilepsy Monitoring Unit which you can read about here.
  • Sudbury Regional Hospital (Health Sciences North, in Greater Sudbury) has an epilepsy monitoring bed; you can visit their site here.

Resources for Mental Health

Epilepsy is not a mental health disorder, but mental health challenges can arise alongside it, such as depression and anxiety. These are just as important to address as the physical ones – and there are several organizations throughout Ontario that can help you with them.

Children’s Mental Health Ontario:Expand Children’s Mental Health Ontario: Section

Children’s Mental Health Ontario (CMHO) is an organization dedicated to the mental health and well-being of children. In addition to working to improve services, strengthen agencies, and build awareness, their site provides information about mental health challenges as well as links to services and other organizations.

Canadian Mental Health Association Ontario:Expand Canadian Mental Health Association Ontario: Section

The Canadian Mental Health Association (CMHA) Ontario is our provincial chapter in a non-profit, charitable organization dedicated to promoting mental health across Canada. They provide news, resources, information, and services and support. The CHMA Ontario has 32 branches across the provinces that can help provide community mental health services to you or a loved one.

Ontario Mental Health Helpline:Expand Ontario Mental Health Helpline: Section

The Mental Health Helpline is a government-funded service that provides free information about mental health services, as well as basic facts about mental illness and support to help you in your unique circumstances. They can be reached by the phone at 1-866-531-2600, or online by e-mail or chat, and your contact will be kept confidential and anonymous.

Mind Your Mind:Expand Mind Your Mind: Section

Mind Your Mind is a non-profit mental health program for youth to find support in times of challenge. It provides resources to help inform people about mental illness and facilitate access to community support. It also serves as a platform for youth to share their stories about mental health.

eMentalHealth.ca:Expand eMentalHealth.ca: Section

eMentalhealth.ca is a non-profit initiative dedicated to improving the mental health of children, youth, and families. It seeks to provide anonymous, confidential, and trustworthy information. Their website can be used to find mental health services, and you can also find other resources such as info sheets, screening tools, and news.

Online Communities and Connections

Sometimes it can be difficult to connect with other people, especially if your experiences aren’t well understood by those around you. Fortunately, in this day and age, technology can easily help bridge these gaps. There are forums online that you can join and speak to other people living with epilepsy – and they are free to register and join. These are also open to everyone, whether you have epilepsy yourself, or someone you care about does.

The Epilepsy Foundation Forums:Expand The Epilepsy Foundation Forums: Section

The Epilepsy Foundation has a large forum with many members, and many subcategories for you to help focus on what you’re concerned or interested about. You can access it here.

Coping with Epilepsy:Expand Coping with Epilepsy: Section

Coping with Epilepsy is another website that also provides resources, information, and other links. However, keep in mind that this website is not run by medical professionals and members are not professionals unless they are clearly identified as such. You can access it here.

AbilityOnline:Expand AbilityOnline: Section

AbilityOnline is a website focused on connecting kids, teens, and young adults who have disabilities, as well as their parents and siblings. It is closely monitored and moderated to ensure that the forums stay safe and supportive. You can access it here.