Thirteen-year-old Seán McManus Allen, who is deafblind after being born with a rare syndrome, loves to list off populations and capitals of various countries around the world. Repeatedly.

His obsession with such facts is a trait of behaviour disorders that can come with the Charge syndrome he has, but it seems his deafness keeps coming in the way of an accurate assessment and support for his additional needs. That’s what happens, says Chime, the national charity for deafness and hearing loss, when children’s disability services are all geared towards a hearing world.

About 40 per cent of the approximately 100 children born with hearing loss in the Republic every year will have additional disabilities and these are not being diagnosed, says Chime’s director of specialist services, David Buxonat.

“The biggest problem, without a doubt, is the assessments,” explains Brendan Lennon, head of advocacy with Chime (formerly known as DeafHear). A psychologist with no expertise in deaf children will typically underestimate the cognitive potential of a child in assessment.

This was the experience of Seán’s parents, Martha McManus and Wesley Allen. When they were having difficulties with his behaviour, one psychologist suggested he might have ADHD and so they approached the Child and Adolescent Mental Health Services (CAMHS). But because a psychologist there adjudged Seán to have a “moderate” intellectual disability, he was turned down for CAMHS.

“You have got to be joking,” was Martha’s response to the “moderate intellectual disability” verdict.

“I have met people with a moderate intellectual disability and this isn’t it, it’s mild. But this is the problem when you have someone with a dual diagnosis and your child is being assessed against somebody who is hearing.”

It’s hard, she suggests, to explain to a psychologist that a delay is from the lack of language, not from lack of intelligence. “It is from a language delay brought on by being deaf, not because his brain isn’t there,” she says in exasperation. They got a second opinion from the psychologist who had assessed Seán at the age of three and, says Martha, came out of retirement “to defend his brain power”.

However, her professional assessment that Seán’s intellectual disability was “mild at worst”, still resulted in a second rejection by CAMHS. We were told, says Martha, that “he needed to be referred back to disability services because he had other things wrong with him; disability services we have been waiting for since he was seven”.

There is a dispute with the HSE about exactly how many years Seán has been on a waiting list for disability services since the family moved from Balbriggan to Kiltipper in Tallaght in 2014. But the fact of the matter, according to Martha, is that he hasn’t had a service since the age of six when he left Child Vision, in Drumcondra, the only place in Ireland totally dedicated to the education and therapy needs of blind and multi-disabled children.

Unfortunately, they had to move Seán from this “idyllic campus”, says Martha, because his deafness was preventing him from engaging with the curriculum. But during more than three years of preschool and primary education there, his parents knew everything possible was being done, not only for him but also in supporting them.

Since transferring to the Holy Family School for the Deaf Cabra, the only specialist intervention service he has been able to receive there is speech and language therapy. No wonder his parents, along with the whole school community, have reacted so angrily to the HSE’s plan to redeploy their children’s one specialist therapist as the Progressing Disability Services (PDS) programme is rolled out, as reported in The Irish Times in March.

These children are already taking up clinical time. This is what is really frustrating

The “progress” that deaf children need, say their parents and advocates, is access to therapists trained to work with hearing loss and who could communicate in Irish Sign Language (ISL) when necessary. The HSE knew this was what was required for this relatively small cohort of children when it was planning PDS, which is designed to provide services in the community through more than 90 different teams.

A national advisory report drawn up for the PDS working group back in 2017 found the lack of experience in working with deaf children among staff in primary care and children’s disability network teams was “leading to the risk of lack of diagnosis or misdiagnosis”. It acknowledged the need for a national, specialist support service, along with a specialist mental health and deafness service for children.

Ever since the publication of that report, Chime has been proposing a national, multidisciplinary team to be based in Dublin, initially consisting of a clinical psychologist, occupational psychologist and speech and language therapist. The estimated €300,000-plus budget for such a team is already being spent on unsatisfactory services for these children, it argues, and merely needs to be “redistributed” to provide a system that works.

“These children are already taking up clinical time,” says Lennon. “This is what is really frustrating. They are going in to see people who aren’t capable and it is taking up the clinicians’ time, it’s taking up the families’ time, and it is getting them nowhere.”

Chime has had discussions at HSE and departmental level but “we have no commitment yet, no timeline, no implementation plan”, says Lennon.

“We can’t tell families when we expect this service to be in place because we literally have no idea. We have been waiting 3½ years now and we have no idea whether it’s going to be another 3½.”

Buxonat says: “On the one hand, we have the HSE acknowledging the need for specialism and, on the other hand, we have the HSE trying to remove someone from the schools that actually does those specialities.”

Chime representatives are due to meet the Minister of State for Disability Issues, Anne Rabbitte, for the first time later this week, to impress on her what is needed for children who they believe are at more of a disadvantage than their peers with other disabilities when it comes to assessments and provision of supports.

Long waiting lists are a feature of many public health and disability services but even when parents do eventually get in the door with their deaf child to see the clinician or the therapist, they’re actually not getting anywhere, says Lennon.

“Parents are at their wits’ end; some who have the resources are going to the UK, or they’re online searching for solutions, because they have got in the door, they have seen clinicians and the response is ‘not sure’ or ‘don’t know what’s going on’. It’s soul destroying for the parents and has lifelong consequences for the kids.”

Earlier in April, Rabbitte intervened in the furore over the removal of specialists from special needs schools by telling the HSE to pause the rollout of the PDS in its current format.

Seán McManus Allen, who is deafblind, was born with a rare syndrome, and has an obsession with facts. Photograph: Nick Bradshaw
Seán McManus Allen, who is deafblind, was born with a rare syndrome, and has an obsession with facts. Photograph: Nick Bradshaw

“We’re not against PDS and I think PDS will do good in many areas but, with our kids, we don’t think it is the right approach,” says Buxonat.

The lack of a specialist service for deaf children “fundamentally undermines one of the cornerstones of PDS, which was about equity”, says Lennon.

“My main gripe with the HSE is that this cohort of children, they were always being left behind, but this continues to be the case, even though they have acknowledged the need. They have looked at it, they understand it since November 2017, but have still done nothing about it.”

I can actually love my child again because he is not driving me potty

Seán’s parents felt they couldn’t wait any longer for public services to treat their son appropriately and organised for him to see a psychiatrist privately. “I have paid €1,050 so far for an assessment and two appointments to get him on Ritalin [brand name for methylphenidate, a drug used for the treatment of ADHD] and we don’t know ourselves,” says Martha. “I can actually love my child again because he is not driving me potty.”

She explains how Seán would come in, perhaps when she was in the middle of cooking dinner, and start asking her about the population of this country and the capital of that country.

“If I don’t know the answers or if I don’t know what he’s asking, he’ll just kick off and he won’t stop – he is not able to stop – until he has the answer. So, you have to put down what you’re doing and go look it up.”

Teachers at his school have also been dealing with his disruptive behaviour. “He has oppositional defiant disorder as well, which means he won’t do anything you tell him. He thinks he is the boss of the world and of the school,” says Martha, who wonders where the mental health services are for children such as Seán.

“When you get a refusal letter from CAMHS, where do you go? Because there is no CAMHS 2.”

In the UK, there are at least 80 full-time equivalent professionals working in specialist services for deaf and hard of hearing children in the area of CAMHS and challenging behaviour, according to Lennon. In the Republic, there is none.

Initially, says Martha, the private psychiatrist was reluctant to prescribe Ritalin for Seán because he isn’t supported by a multidisciplinary team that cares for children attending CAMHS.

“This is part of his syndrome,” says Martha. “It is not like I have voluntarily decided to just drug my child. It has taken us 13 years to realise he is harming himself so much by his behaviour. He doesn’t have any friends; there are times with his behaviour when nobody in his family likes him.”

Although Seán has been on Ritalin for only 3½ months, it has already had a very positive impact. It has really helped with his outbursts and his concentration, says Martha, who was amazed to see Seán sit down and do a project with his younger brother Michael (nine) on a computer.

Previous to that, she says, you couldn’t have put Seán with his brother in the one room, nor with his sister Lara [seven]. The future is looking brighter now for the teenager who is in first year of secondary school and, says his mother, “is absolutely loving it”. 

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