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One Parent’s Feedback: National Audiology Review
By admin | March 12, 2010
The National Audiology Review is inviting submissions from parents & carers of deaf children and service users, before March 19, 2010. This feedback comes from a mother of a 4 year old boy who was diagnosed as being profoundly deaf at 14 months old.
1. Newborn Hearing Screening:
Why do babies not automatically have hearing tests at birth? The earlier a diagnosis is, the sooner options can be considered and actions taken. The child can be fitted with the right hearing aids and have access to speech and language services. In this situation the child had to wait until 14 months to be diagnosed and as such, lost out on vital months of intervention.
2. Hearing Aid Moulds:
The delivery of hearing moulds is severely delayed at times. Organisations such as Audi Labs can dispatch an order within days but with the HSE it can take months and in the above situation it took 3 months. Kids are constantly growing and these moulds need changing regularly. What is the point in waiting 3 months when the child could have grown out of that size by the time it arrives? Turnaround times need to be assessed.
3. Staff Replacement:
Where a doctor needs to be replaced either temporarily or permanently the HSE should move faster. In one case, it took 18 months to replace a doctor. This is not acceptable when kids need the services now and 18 months can make a big difference to their development.
4. Lack of Information Packs: The HSE do not supply a parents’ information pack on deafness. Parents have to do their own research and learn from other parents, the internet and resource organizations.
5. Limited clinic hours:
The need for automatic appointments at Hearing Services of the HSE in North Great Georges St. There is currently no process to offer regular appointments. Added to this the need for longer clinic hours. Being closed at lunch time and closing at 4pm leaves little time for working parents.
6. ISL tutor payment scheme:
Currently the payment goes from the Department of Education to the parent to the tutor. Is there any reason why the tutor cannot deal directly with the department?
7. Funding of Cochlear Implant Programme:
The Beaumont Hospital Cochlear Implant Programme is under funded. The sooner a child is fitted with an implant the better their speech & language progress will be.
8. Shortage of Visiting Teachers:
The visiting teacher for the deaf service is under-resourced, which gives teachers a very large caseload and means they sometimes have to miss a weekly appointment. As a home-school liason, their role is under-valued.
As a note to other parents this mother says, “we find most people we have dealt with in all the services to be very helpful, which would indicate that they are doing as best they can either under heavy workloads, possible unnecessary red tape and probable under funding. If this feedback helps improve the services provided, then that would be great”.
To have your say, email your opinions to primarycare@hse.ie by March 19.
Topics: Irish Deaf Kids | 6 Comments »
March 16th, 2010 at 10:07 pm
I agree with all the above comments.
My daughter was found to have hearing difficulties at the age of 16 months. She never had a hearing test done at all at a developmental check-up, being my first child I knew no different. When diagnosed, parents should be given advice of some sort about what route to take.
DeafHear were the first to give us the information that we needed and whan we met the other parents at their seminar, we realised we were not alone and hope was there for our daughter, for that we are eternally grateful.
It was also encouraging to see that even at a young age our daughter realised she was not the only one with hearing aids, this seemed to help her understand a little better.
The Speech Therapy wait is way too long, children at a young age should be of top priority as this is the time they absorb everything. All in all, we need an intervention service to react quicker and make sure our children have the tools they will need in life.
Also, when new technology comes along, it should be passed on to those who need it as quickly as possible, this is a common problem.
March 26th, 2010 at 3:49 pm
I agree completely with the above comments. My little boy was diagnosed at 8 months and we consider that very lucky after what we have been told by other parents. But if new borns were screened we could have had intervention earlier. My son now uses a cochlear implant that he received at 22 months of age. There is wonderful work being done by Beaumont’s CI team and DeafHear but it is grossly underfunded. I think deaf kids are given a raw deal from the beginning: late diagnosis, lack of information for parents, trouble with getting replacement hearing aids etc, and now the goverment has cut special needs assistants in schools. My son is now 4 and we had really hoped for him to go to mainstream school like his sisters but to think that he may not have a special needs assistant in school makes me so angry.
April 1st, 2010 at 9:08 pm
My son was diagnosed with moderate to severe high frequency hearing loss at just under 4 years of age. In hindsight I should have brought my son out of the country to get an accurate diagnosis of his hearing loss a lot earlier. I noticed two years previously that my son’s language was just not developing beyond the two word stage and we trusted the professionals who failed to carry out the obvious thing of screening his hearing. There is a huge problem with audiological management in this country, for example here in Galway there are no audiological services. Listen into the Joe Duffy show on Tuesday as one of the parents here in Galway will be talking about this problem.
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