Accommodations in the Leaving Cert for people with disabilities

Junior Cert student Niamh Kilcawley, who lost her sight when she was younger, completed her Junior Cert exams this month working with a scribe. Picture: Howard Crowdy

The family of a Junior Cert student who lost her sight due to a brain tumour has called for a review of how State exam accommodations are made for students who have a disability.

Niamh Kilcawley, 15, from Dungarvan, Co Waterford, completed her Junior Cert exams this month, working with a scribe.

She lost her sight after she was diagnosed with a brain tumor at the age of nine. In primary school she spent 18 months undergoing chemotherapy in Crumlin Children’s Hospital and she had numerous surgeries at Beaumont.

Under the State Examinations Commission (SEC) Reasonable Accommodations in the Certificate Exams (Race) scheme, Niamh was also granted access to a special examination centre, and an additional 10 minutes per hour.

However, this additional ten minutes per hour does not fully consider the complexity involved with working with a scribe, her family believes.

Speaking to the Irish Examiner, Niamh found sitting the exams with the accommodations granted was OK.

However, there were some aspects of the paper layout and specific questions where she needed to rely on her scribe to describe images presented in questions.

“I was very lucky that my scribe was able to do that but I’m not sure that everybody would be able to give me an accurate description," she said.

The 10 minutes seems to be just for everybody. I don’t think it was assigned particularly for me, or for anyone.

“I think if anyone needed additional time, they would have gotten the ten minutes and it's not necessarily modified for any particular needs.” 

Asked if she thinks the Race scheme should be reviewed, Niamh said: “I think so, definitely. Every child has a different need, and every person has a different need. 

"It's such a simple thing to change if you just ask people and modify it to their own particular needs.” 

Niamh attends a mainstream post-primary school, and she took all honours subjects in her exams. When she finishes school, she would one day like to be a journalist.

Her family believes she is the first blind student to sit exams in the newly revised Junior Cycle course, which was examined for the first time in many subjects this year.

Her mother Sinéad Kilcawley, who is also the vice-chair of the Waterford Disability Network, said the family counts themselves lucky to be at the point where Niamh is about to begin her Senior Cycle education.

“We had a very difficult few years where she missed a lot of school but Niamh, to her credit, has stayed in mainstream and done very well in school, with the support of her school I might add,” Ms Kilcawley said. 

“Obviously there aren’t many blind students. There are more visually impaired students than blind, I suspect, in the education system at the moment.” 

 “That is the reason I believe we have had so many issues because the issues we’ve encountered I don’t know if they have been highlighted as much as they should be.” 

Niamh Kilcawley with her mother Sinead at their home in Ballinroad, Dungarvan. Picture: Howard Crowdy

After Niamh lost her sight, one of her primary school teachers learnt braille in order to teach her the tactile writing system.

While Niamh now has basic braille, Covid restrictions curtailed her access in post-primary to further braille or technology lessons.

Ms Kilcawley said: “That isn’t anybody’s fault but that should have been taken into account when she did her Junior Cert.” 

In February, before Niamh’s mocks, Ms Kilcawley established what she believed were Niamh’s entitlements under the Race scheme. The information was not readily available, she believes.

“The SEC pointed me to a pdf document that is very long, very difficult to negotiate, and as the parent of two children who have special needs, I don’t have the time to look through lengthy documents.” 

It shouldn’t be up to the parent to have the responsibility to fully establish what their children are entitled to; the information should be readily available. 

Under the new Junior Cert course, there is also a practical element to the Home Economics exam where students are asked to demonstrate their knowledge of cooking skills.

“Niamh wasn’t given extra time for that; she was given a helper for health and safety, but she wasn’t given extra time.” 

 “I cannot speak highly enough of her school,” Ms Kilcawley said. “The problem I have is that the information isn’t readily available, and it’s important for a child to know their rights and what they are entitled to.” 

Ten minutes per hour is not enough, Ms Kilcawley believes, as it does not fully consider the complexity of working with a scribe in an exam setting.

“Consider being blind; You have to sit down with a scribe, your scribe has to read all of the exam to you so you have all the questions, you then have to establish which questions you are going to do in terms of points. 

"Then you have to dictate your answer, then you have to go back and check all your questions, like everybody does when they sit an exam.” 

“I asked why there was a 10-minute allocation, when was it established and what was the justification behind it,” she added.

“I have had no response to that. My point is that 10 minutes is very important for students, and they are entitled to know why somebody decided on 10minutes." 

I can’t understand and nobody can tell me where this timeframe has come from.

“I don’t want to criticise people because I don’t think people really want to do any harm; I just think they don’t understand the needs of a child who is blind. 

"If there is a review, that group has to contain people who’ve experienced the system because without that how do you know what to improve?

“I don’t want to criticise anybody, I just want them to understand what we have been through so that we can initiate a review of a system that I don’t believe has been reviewed in a very long time.” 

Ten minutes per hour is not enough, Ms Kilcawley believes, as it does not fully consider the complexity of working with a scribe in an exam setting.

While it will not comment on individual cases, the SEC told the Irish Examiner in a statement that approximately 200 students with visual impairments had been provided with accommodations this year. 

The SEC said the rules are presented in  "very accessible language" and that schools are "very well placed" to provide information about the scheme as they have devolved authority in relation to it. 

In relation to the 10-minute accommodation, the SEC said extra time of 10 minutes per hour is only available in three very specific circumstances, one of which is for candidates with visual impairments under the care of the VTS. 

"Additional time was introduced following the review by the Expert Advisory Group (2000); was reviewed again by the Advisory Group on Reasonable Accommodations (2007); and was retained during the reform of the scheme in advance of the 2017 examinations," the statement said. 

The scheme will be subject to further review in the context of the review of Senior Cycle, including for further use of assistive technology. 

What is the Race scheme?

This week, the SEC will begin its second sitting of the Leaving Cert exams for students affected by bereavement, illness, accident or injury. 

The deferred exams are being offered this year through an extension of its Race scheme, which also includes special access or other arrangements for students who have physical, visual, hearing and/or learning difficulties.

Accommodations offered under the scheme include assistive technology, waivers from being assessed on aspects of spelling, grammar or punctuation in language subjects, and rest breaks. 

Other longstanding arrangements provided by the SEC under the scheme include arranging exams in ‘atypical’ venues such as hospitals, granting of rest breaks, or access to food, drink and medicine.

According to the SEC, the focus of the Race scheme is on the “need to remove examination access barriers, while retaining the need to assess the same underlying skills and competencies, and to apply the same standards of achievement, as apply to all other students”. 

The deferred exams are a very new aspect of the scheme, running as a pilot for the first time in 2019 for a small number of bereaved students. 

Before that summer, students who lost a close relative had to either sit their exams or wait until the next year. 

Change came after Joe McHugh, the former minister for education, was particularly moved by the experiences of student Rhona Butler.

She told RTÉ radio about her experiences losing her mother to cancer during her Leaving Cert exams. 

The day after her mother passed away, Ms Butler had to sit her business exam, and the Monday after her mother’s funeral she sat her accounting exam.

Deferred exams are a very new aspect of the Race scheme brought in after  former minister for education, Joe McHugh, heard the plight of one student whose mother died during the Leaving Cert exams. Picture: Julien Behal Photography

Later that summer, Amy Richards went public about her experiences sitting her exams in Wexford General Hospital after her appendix ruptured, while on strong painkillers and anti-nausea medication. 

Thanks to the pandemic, this summer is the first time since that year the full set of State exams has run. With Covid still circulating, students who develop or test positive during their exams were subjected to a mandatory eight-day absence from their exams.

With this in mind, as well as the experiences highlighted by student in the years prior, the SEC extended access to the deferred exams this year to include students who were unable to sit their exams due to serious accident, injury, or illness, as well as on public health grounds because of  Covid.

The SEC has outlined what seems serious accidents, injury and illness, and minor ailments such as gastroenteritis, migraines, hay fever, elective surgery, and regular stress and anxiety do not qualify.

Qualifying illnesses and conditions it lists include cancer, cardiac issues, transplants, broken bones, sepsis, epilepsy, Crohn’s disease, or an appendectomy.

The SEC guidelines are very clear; The deferred sittings are not ‘second-chance’ exams, and students who attempt the original paper will not be granted access to the deferred sittings. But what happens when you suffer a serious illness or accident during an exam?

There was anger this exam cycle when a mother went public to reveal that her son, who was forced to leave his history exam in agony with appendicitis, was blocked from accessing the deferred sitting because he had initially attempted the exam.

Following public outcry, that decision was later reversed. However, it highlighted a key issue that many advocacy groups have been trying to highlight for years.

Epilepsy Ireland has been consistently raising the issue on behalf of its members. 

“For years epilepsy Ireland has been campaigning that student who have a seizure before or during an exam should have access to a second paper," said Patrick McGeoghegan, advocacy and communications manager.

They have no control over the condition and seizures are extremely debilitating in some cases and would certainly affect a student performance in an exam.

“Whenever there was the announcement to run the deferred sitting, it's obviously very welcome but obviously the big caveat around it was for students who have a medical emergency during their exams.

“A seizure at 9.10 am is the same as a seizure at 10 o'clock. It still has the same impact.” 

The exception was “quite rightly” granted for the student who was forced to leave his history exam, said Patrick Murphy, Epilepsy Ireland chief executive.

“Now we have seen a policy change, and exception created. What is the definition now, where is the line? That is our big question what does this mean for other students with qualifying conditions including epilepsy.” 

 “Every student now needs clarity as to as to what this new policy is going to be.” 

Epilepsy Ireland also has concerns regarding the four-day timeframe for collecting evidence from a consultant, he said, adding that this is quite difficult to secure.