Education is an important part of life. If a person with epilepsy wishes to go to college or university and meets the entrance criteria, they should be given every encouragement and chance to succeed in this next phase of their life.
It can be difficult for parents to let go, especially if their teen will be living away from home while studying. A young adult with epilepsy may also have some worries about whether they can manage on their own.
Preparing to go to college or university
There are several things teens and parents can do to help ensure a smooth transition to college or university.
Advice for parents:
- You and your teen should talk to the epilepsy care team while they are still in high school. Discuss what your teen wants to do after school and what issues they may encounter with career planning, further studies and suitable jobs. The team may refer you to a career counsellor.
- As with any teenager, teach them independent living skills at home, including responsibility for taking their own medications, responsibility for scheduling clinic visits, practising a healthy lifestyle, and some cooking, cleaning and laundry. Similarly, encourage your teen to develop good study habits and skills while they are still in high school.
Advice for teens:
- Make sure you know all about your epilepsy condition, the care required and the experts involved. You should have a good rapport with your epilepsy care team. You should know when and where to seek medical help.
- Know about epilepsy associations and how they can help.
- Most colleges and universities have a Student Accessibility Office for students with disabilities or special needs. Contact and, if possible, visit the office at the school you want to attend to see what sort of information, advice and support services they can offer.
- Some colleges also offer programs that are specifically designed to help young adults who have physical or learning disabilities with career planning or employment training. They may help upgrade literacy, academic or computer skills, or offer help with job skills.
- Attend an orientation course offered by the college or university to new students. Many centres for students with disabilities offer a special transition course during the summer to new students with disabilities.
- Contact the health centre at the college or university and make them aware of your condition, medications you are taking and what help you may need from them while on campus. At the same time, you can find out what other services they offer.
- If you need to see a neurologist while at school, ask the college or university’s health centre and your home epilepsy care team for advice and a referral. If possible, meet with the neurologist once beforehand to ensure they know you and are familiar with your condition. Get your home epilepsy care team to talk to them or send a letter and pass on a copy of all relevant information.
- Some students may be entitled to accommodations to help support their access and success at college or university. Before the college or university year starts, obtain a comprehensive letter from one or more members of the epilepsy care team. For example, a letter with medical information about your seizures can be helpful in accessing a residence room closer to classes. A letter from a psychologist that outlines your learning profile and special needs may help you get more time to complete exams and papers.
- Consider working with your epilepsy team to develop a seizure safety plan that includes a description of your seizures, medication protocols and when to contact 911.
- Provide the seizure safety plan to the Residence Office, Resident Advisor, Health Office, and a trusted student in each class.
- Remember that your parents are still available to give you help and support if you need it.
At college or university
Starting college or university is stressful in many ways, even for students without chronic health conditions. Students may be living away from home for the first time; they may keep irregular hours and not get enough sleep; alcohol is widely available; and students are expected to take much more responsibility for their own work than they were in high school. However, college or university is also a time when students gain confidence and independence, as well as an education. With the help of some basic precautions, a student with epilepsy should be no exception.
Health
If your teen is staying in a college/university residence, it is a good idea for them to tell the head of the residence about their condition and explain what to do if they have a seizure. Your teen should also tell the floor Resident Advisor (usually an older student) any information that they will need to know. While your teen may not wish to tell the whole campus about their epilepsy, anyone who spends a lot of time with them alone, including roommates and friends, should know about their condition and how to deal with a seizure.
It is also a good idea for your teen to do the following while in college or university:
- Maintain a healthy lifestyle: get enough sleep and avoid alcohol, drugs and other seizure triggers.
- Keep in touch with Accessibility Services. Students can use such services not only for support but to become an advocate for students with epilepsy and other chronic conditions on campus.
- Keep in touch with the campus health centre for check-ups, advice, information and possible medical treatment.
- Make regular clinic visits, either at home or with their new local neurologist.
Learning
The learning environment in college and university is very different than in high school, and many students have some trouble making the transition. For this reason, student centres at many colleges and universities offer services to help students improve their study skills, including planning, time management, note-taking and essay-writing. Students with epilepsy should take advantage of these supports if they can.
If your teen has epilepsy, they may also have difficulty with memory, speed of processing information or speed of motor function. It is important to have support from a recent neuropsychological or psychoeducational assessment that defines any specific challenges and makes recommendations for dealing with them. For example, the neurologist or the epilepsy team, along with the psychological evaluation, can emphasize that your teen needs extra time for exams. In some instances, they may need a scribe to record work or a tape recorder or laptop computer to record information in school.
Your teen should speak to their professors at the start of each term and let them know about their condition. Most professors will be willing to make accommodations if they are told about your teen’s needs ahead of time; for example, they might extend a report deadline by a few days if your teen has a seizure.
Support network
Attending college or university presents new opportunities to make connections with others. It is also a time of increased responsibility, which brings many changes in a young adult’s life. Finding ways to build a social network can be a source of support and reduce feelings of isolation. This can be done by attending student orientation activities, residence events or exploring student groups or clubs. Many student health centres offer wellness activities, which may provide opportunities for peer support.
Resources at college or university
Accessibility services for students with disabilities
Many universities have a Student Accessibility Office for students with disabilities in areas such as learning, physical or mental health needs. These centres can offer information, advice and preparation to help the new student better cope with university life and academic accommodations.
Accommodations in Ontario are individualized supports mandated under the Human Rights Code to ensure that students have equal access to education. This may include how students are tested (with extra time, in a quiet space), in-class supports (help with note taking, permission to record lectures), assistive technology or providing access to facilities that accommodate the student’s medical needs (accessible housing). If this is something your teen may need, they should reach out to the Student Accessibility Office at their college or university after they accept the offer to attend. There is a process that the office must follow to approve accommodations, including reviewing documentation from health-care providers, meeting with students and formalizing a plan. Making contact early can help prevent delays in getting accommodations in place.
The Student Accessibility Offices can help students throughout their stay at college or university with academic and non-academic issues by connecting them with relevant services and resources. They can help the student move out of the college or university environment and access employment opportunities.
Transition guides and/or programming are often offered by colleges and universities to help new students with disabilities prepare for all aspects of university life. These programs are usually held over the summer and can include the chance to experience living away from home and in a campus environment. The programs are led by students, counsellors, health professionals, university administrators and professors. Your teen should contact the Student Accessibility Office at their college or university early and ask about the transition programs they offer.
Campus health and mental health services
Most colleges and universities have health clinics where students can go for general health concerns. They usually offer some specialized services as well and may be able to provide referrals to other specialists, such as neurologists.
Most colleges and universities also offer confidential counselling and help for students who are experiencing stress, depression, anxiety and other emotional and personal problems.
Epilepsy and U
Epilepsy and U is a Canadian educational resource designed to support the inclusion and success of students with epilepsy in college and university. It offers a specialized toolkit with resources for university staff and students.
National Educational Association of Disabled Students (NEADS)
National Educational Association of Disabled Students (NEADS) is a Canada-wide chain of offices at universities which offers information, newsletters, meetings and conferences to assist students with disabilities who are attending a university or college. The aim of NEADS is to make college or university education more accessible on all levels to students with disabilities. NEADS is part of the Council of Canadians with Disabilities.
ARCH
ARCH Disability Law Centre is a legal clinic that focuses exclusively on disability rights in Ontario. They provide advice, referrals and legal representation to ensure the equality of people with disabilities.
Check to see if a similar legal resource centre exists in your area.
Canadian Epilepsy Alliance
The Canadian Epilepsy Alliance is a network of organizations across Canada dedicated to promoting independence and quality of life for those affected by epilepsy. CEA can offer resources and services for people with epilepsy and their families. For more information, visit https://www.canadianepilepsyalliance.org/.
Find your local epilepsy agency
Find the epilepsy support organization that is closest to the college or university your teen will be attending and ask about what services and supports they offer.
The Epilepsy Ontario website can help you find an agency in Ontario: https://epilepsyontario.org/agency/?region=ontario
Ontario Student Assistance Program (OSAP)
Students with disabilities may be entitled to financial assistance with the cost of their education and/or additional funding or benefits to access disability-related educational service and equipment. To learn more, visit https://www.ontario.ca/page/osap-for-under-represented-learners.
Disability awards
There are scholarships and bursaries offered in Canada for students with a disability/chronic health condition. To learn more, visit https://disabilityawards.ca/.