Deaf children and their families fight to be heard

When Genevieve was diagnosed profoundly deaf at the age of two, her mother was consumed with worry.

“This was a new experience for me,” she says. “ I hadn’t had an experience with a deaf person in my life before. So I believed everything that they [the professionals] told me.”

It was the 1990s and she was told that sending her child to her local primary school in Donegal was the best option.

Experts were influenced by a Department of Education policy that emphasised integrating children with special needs into mainstream schools.

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Prior to the 1990s, some deaf children had been placed in mainstream schools on an ad-hoc basis, but most would have been mildly or moderately deaf.

But since the mainstreaming policy kicked in, the speed and scale of the shift has been astonishing.

Today, it is estimated that about 95 per cent of the estimated 5,000 deaf or hard of hearing children are placed in their local schools.

But, more than 20 years on, has the policy change resulting in better outcomes for deaf children?

An Irish Times investigation, based on interviews with parents, teachers and experts over a six-month period, paints a very mixed picture.

While deaf children can thrive in mainstream classes, many are being let down by a system where access to appropriate supports is patchy and where teachers lack specialist training.

It is clear, too, that there is a major attainment gap, even though deafness is not in itself a learning disability.

Higher education

The proportion of deaf children who progress on to higher education is half the rate of the wider community.

This is despite official policies which state that hard of hearing children should be able to leave school with levels of educational attainment on a par with other children.

Experts say it is essential that schools are able to provide effective educational, social and emotional supports to deaf children.

Otherwise, there is every risk that the potential of a new generation of children will be squandered.

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Genevieve is, in many respects, a success story.

The now 23-year-old woman is one of the minority of deaf students who has progressed on to higher education.

While she should be thriving in college with a supportive family, significant literacy issues are holding her back.

She has taken a year out from her degree course in accounting to work on this, on the advice of her college, Letterkenny Institute of Technology.

These issues, she feels, can be traced back to a lack of support in her school years.

Genevieve didn’t have an special needs assistant (SNA) in her local primary school.

In addition, her mother Patricia says that while her teachers knew she was profoundly deaf, they didn’t know how to include her.

“They hadn’t clue what they were doing,” she says.

Patricia spent a lot of time working with the school, and lobbied for extra support until Genevieve received four hours a week with a resource teacher.

By then she had already fallen behind. Without any classroom support, it was a struggle to catch up.

By sixth class, the educational psychologist assessed her to be two-to-three years behind her peers in English – even though she had no learning difficulties.

Disappeared

While her secondary school principal was able to secure a full-time SNA to help her to follow what was going on in the classroom, this vital support disappeared when she was in third year – a victim of recession-related cuts to special needs resources.

By the end of her transition year she’d had enough.

“Genevieve said to me ,‘Mum, let’s just throw in the towel with mainstream,’” says Patricia.

At this point, she went to board in St Mary’s School for Deaf Girls in Dublin (now amalgamated into The Holy Family School for the Deaf along with St Joseph’s School for Deaf Boys) where she did well, academically and socially, setting her up for third-level education.

While Genevieve moved on to college, her mother is scathing about the system, saying they had to “fight for everything”.

She believes that if Genny had received in primary school the SNA support she had in secondary school, “she would have excelled”.

While she is full of praise for the Holy Family school she would have preferred her to stay at home. “If the [SNA]funding had been continued I would have kept her in Donegal.”

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Given the dramatic policy changes for deaf children in recent decades, you might expect detailed outcomes to be available on how these children are faring in the education system.

In the foreword to the National Council for Special Education’s (NCSE) seminal policy document on deaf education published in 2011, chief executive Teresa Griffin wrote: “Deaf and hard of hearing children should be able to leave school with levels of educational attainment that are on a par with their hearing peers of similar ability.”

Yet deaf children remain remarkably invisible within the education system.

State exam results do not discriminate on the nature of disability – even in anonymised format.

When asked if it knew how well these children were doing, the Department of Education said the information it required to comment was “not available currently”.

It also said that, at primary level, “children with special educational needs may be exempt from the standardised tests”, though it did not explain why.

The department was asked about the Visiting Teacher Service – a State-funded service that works with teachers to plan suitable supports for hearing-impaired children – for any data on assessments. The request was refused on grounds that the release of data would require the consent of parents.

Deafhear, a national deaf and hard of hearing support service, has called on the department and the NCSE to look more closely at standardised tests.

Its head of advocacy, Brendan Lennon, says extracting data to compare the performance of deaf children to their hearing peers is standard practice in the UK. “They could easily do this...but I suspect that they are afraid to do so.”

Lack of supports

There are also signs that significant numbers of deaf children are struggling in the mainstream system because of a lack of appropriate supports.

Eimear O’Rourke, principal of the Holy Family School for the Deaf in Cabra, Dublin, says 17 per cent of its current primary students and 43 per cent of its secondary students had transferred to it from mainstream schools – about a third overall.

One of the more solid indicators available is the participation rate of deaf young people in higher education.

Deafhear has analysed figures from the Association for Higher Education Access and Disability (Ahead) which indicate that just 90 deaf and hard of hearing students had entered third-level education last year.

This works out as a participation rate of about 30 per cent, compared with a national average of 58 per cent.

So, why is the attainment gap so big?

Parents and teachers say the quality of support is crucial.

Some point to the work of Marc Marshark, a professor at the Rochester Institute of Technology in New York and deaf education expert.

A strong believer in evidence-based approaches to deaf education and a lead contributor to the NCSE’s 2011 deaf education policy paper, he is also well-known for espousing the view that deaf children “learn differently, are more visual, and often process information differently than their hearing peers”.

So if it is accepted that deaf children learn differently to hearing peers, how well have mainstream schools adapted?

Teachers with deaf children in their classrooms say there are few opportunities for them to learn more about teaching deaf children.

The main opportunity is a two-day seminar organised by the Special Education Support Service and delivered by specialist teachers of the deaf once or twice a year.

One parent says training for mainstream school teachers about deafness needs to hammer home the message that “a deaf child is not just a child who cannot hear, but a child who might need to learn differently”.

“This message does not stick for teachers. It is repeated so often at conferences I attend but SNAs and teachers in mainstream need to accept it more readily.”

Teachers in special deaf schools are trained to cater for these needs, but it’s a specialised role.

Eimear O’Rourke at the Holy Family School says “it takes at least five years to become a really effective teacher of deaf children”.

No specialist teacher

Besides which, there has been no specialist teacher of the deaf course in Ireland since UCD’s course closed in 2002.

Those interested in pursing this specialism have had to enrol in courses in the UK, though they have received funding to cover their costs. The quality of sign language available in deaf schools is also a source of concern.

While deaf children have a right to receive an education through Irish Sign Language under the 1998 Education Act, it does not appear to have been backed by a comprehensive effort to ensure teachers of the deaf, many of whom trained during an era in which sign language was actually banned from education, had the opportunity to become fluent.

The Visiting Teacher Service, which is made up of trained teachers of the deaf, is there to assist schools in adapting to the needs of deaf students.

But the service is chronically overstretched, especially since the HSE’s 2011 rollout of a national newborn hearing screening programme that led to a higher diagnosis rate.

It has some 4,400 children on its books – of which 2,600 are active cases with more than 1,800 “on request”.

This is nearly double the number just five years ago, but it still has the same number of teachers: 29.

Informed sources say that there are no plans to hire more, despite concerns expressed about large caseloads in a major review of the service in 2014.

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So, what is the best way of fulfilling the potential of deaf children?

The answer is more complex than a simple choice between mainstream or a special deaf school.

Children, say parents and experts, follow individual paths; there is not necessarily a right and wrong. The quality of supports, however, is crucial.

Rachel Broderick knows this more than most.

She and her husband David have two children, Sarah (9) and Daniel (6), who are both profoundly deaf and have had cochlear implants.

Rachel and David have made strikingly different education choices for their children.

Sarah was judged to be suitable for a local school in Thurles, Co Tipperary, when she responded well to her implant, particularly with her speech development. Her first teacher “was the making of her”, Rachel says.

Showing a clear grasp of the needs of deaf children, this teacher adapted a literacy tool – Jolly Phonics – for Sarah where her mouth would move to the sound as opposed to just hearing the sound.

She also had an special needs assistant. With this support Sarah thrived in junior infants and things were looking good.

As she entered senior infants, the school’s SNA allocation was cut, so Sarah lost her full-time SNA. Another one was made available only to “pop in”, if Sarah experienced any particular problems. The impact was immediate.

“The original SNA had been a bridge of sound for Sarah, repeating missed instruction, maintaining her sound field system, her implant and her hearing aid and assisting with organisation, as Sarah had poor auditory memory skills at this age,” Rachel says.

“The loss of her SNA in the classroom meant Sarah struggled greatly and any technical issues needed one of us to go to the school to resolve.”

Daniel, on the other hand, prefers to use sign language.

His parents decided to send him to the Midwest School for the Deaf in Limerick, a 1½-hour drive away, starting in its preschool.

‘Very happy’

“It’s wonderful. He’s very, very happy. He is accessing the curriculum through sign language, as he doesn’t have any spoken language,” Rachel says.

Meanwhile, Sarah has had her full-time SNA reinstated, accompanied by half an hour of resource teaching a day while the rest of the class is doing Irish.

She is the only deaf student in her school, but “she is very, very happy. She really enjoys school.”

However, Rachel points out that SNA access continues to be “centred around around physical care needs”.

“For a deaf child, care needs should be listed as bridging communication and repeating misheard or unheard instruction,” she says.

In addition, while deaf and hard of hearing children have supposedly had “automatic entitlement” to a minimum level of support since 1998, the department rolled back and eventually stopped this demand-driven approach in 2011 on the grounds of cost.

It means children such as Sarah do not have an absolute right to full-time SNAs, even if needed.

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There are some hopeful signs on the horizon.

For advocates of better sign language in education, funding has just been approved for a new Bachelor of Education Irish sign language entry route.

The idea is to provide a way into teacher education for deaf students who have been exempt from Irish, but who are fluent users of Irish sign language.

A new resource allocation model is being rolled out by the NSCE, based on the profiled educational need of each school, which looks set to be a fairer model than the current one.

Given the often critical support that SNAs provide to deaf children, many parents will also be keen to see the outcome of the NCSE’s review of the assistants’ scheme, part of which involved a public consultation.

One of the terms of reference for that consultation was whether or not communication should be classified as a care need for deaf and hard of hearing children.

Where there are quality supports in mainstream schools, deaf children can thrive.

Though they have experienced ups and downs, the Brodericks’ experience shows how the system can allows parents to follow what education experts might describe as a child-centred, evidence-based approach, which is about finding whatever suits the individual child.

Rachel Broderick says: “Deaf children are succeeding more and more, because it’s more accepted that their education needs are different, and that’s not a bad thing,” she said.

“The stigma about editing educational themes to suit particular needs is gone, and people are more and more open to doing so. That’s very bright for all children, but especially deaf children.”

Deaf education: in numbers

1-2 per 1,000: the number of children born with a hearing loss

90 per cent: the proportion of deaf children born to hearing parents

5,000: estimated number of deaf or hard-of-hearing children in the education system

1,338: the number of deaf and hard-of-hearing children who received up to four hours of resource teaching per week in mainstream school during the last academic year

29: the number of visiting teachers of the deaf to support more than 4,000 deaf and hard-of-hearing children

227: the number of children and their families who received about an hour a week of tuition in Irish sign language at their homes during 2015/2016

4: the number of years it takes to become a fully qualified Irish sign language interpreter or tutor

* This article was supported by the Mary Raftery Journalism Fund