The mother of a deafblind teenager says a €470,000 multi-disciplinary team will be a game changer in confronting missed, delayed or inappropriate diagnosis of additional issues for deaf and hard of hearing youngsters.
A delay in securing proper treatment for 16-year-old Seán McManus Allen forced his parents to secure private treatment.
Now it is hoped that other children and young adults will not have to endure the same experience.
Up to now, deaf and hard of hearing children with complex needs have been assessed against the benchmark of those who can hear.
The HSE-funded team will begin its work on Wednesday (Sep27) at national deafness and hearing loss charity Chime’s centre at Deaf Village Ireland in Cabra, Dublin.
“There has been a barrier to diagnosing other clinical issues for young deaf people, including Seán. No child should be left behind,” said the teenager’s mother Martha McManus, from South Dublin.
“Seán’s deafness kept getting in the way of an accurate assessment and support for his additional needs.
“He was diagnosed as having ‘moderate’ intellectual disability, but it was mild, at worst. His language delay during assessment was brought on by being deaf.”
After a lengthy wait, Sean was diagnosed with ADHD in 2020, which is now being treated.
Martha said the five-person multi-disciplinary team is a “game changer” which will provide children and young adults who are deaf or hard of hearing timely and specialist clinical assessments, conclusive diagnosis and ongoing support.
Chime says 40% of the 200 children born with hearing loss in the Republic every year have additional clinical needs which often go undiagnosed.
The new team will address the growing rate of socio-emotional difficulties among young people who are deaf or hard of hearing – currently over three times that of the typical hearing population.
It will provide a range of supports to children and families, focussing on diagnosis and early intervention, including psychological, occupational therapy and speech and language therapy support.
“Chime has seen heart-breaking cases of children receiving inconclusive or wrong diagnoses, which can set them back and deny them opportunities they deserve,” said the charity’s CEO, Mark Byrne.
“Families have been forced to go private and travel abroad to access the expert professionals they need. The new multi-disciplinary team changes everything for these families.”
The new team will serve deaf and hard of hearing children and young people aged up to the age of 25 through referral and will be launched by Minister of State for Disabilities at the Department of Children, Anne Rabbitte, on Wednesday. (September 27).
She will tell the event that early intervention, conclusive diagnoses and ongoing clinical support are essential to the wellbeing of young people who are deaf or hard of hearing.
“I am delighted to be making good on a promise that deaf children with complex needs can begin to receive services they deserve and live a life in which they may reach their potential,” said the Minister.