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Parents of Deaf Children Asked To Lobby TDs
By admin | December 11, 2010
Earlier this year, the National Audiology Review Group invited parents of deaf children in Ireland, and interested others, to recount their experiences of the national audiology service. Here’s an update and call-to-action from Michael Flynn, the Parent/User Representative of the 2010 Review Group.
The work of the National Audiology Review Committee is complete and a comprehensive report is to go to HSE senior management for approval at their December meeting. An excellent committed group of people made a huge effort to produce this very detailed report.
The publication of this report is a unique opportunity to highlight the need for improved Audiology services in Ireland. I am requesting your assistance with these initial courses of action.
Letter to Oireachtas members requesting assistance in obtaining copies of;
1. National Audiology Review Report 2010
A new report identifying the need for improved Audiology Services and providing a comprehensive suite of recommendations. It is proposed that this report will be a blue-print for future Audiology services in Ireland.
2. Cork Serious Incident Report 2009
The HSE has yet to publish this report. It details the cases of almost 1000 children who suffered suspected mis-diagnosis of hearing loss over many years in the Cork area. Examples of children having multiple (6 number) unnecessary operations under general anaesthetic provide evidence of the shocking failure of HSE services. Potential litigation costs totalling millions are likely in many cases.
3. Newborn Screening UNHS Progress Update
About 200 children are born in Ireland each year with permanent childhood hearing loss. A simple 1 minute screen test would identify these children at birth. These children are discharged from maternity hospitals into a system where the current waiting list for child hearing assessment is over 10,000.
Without UNHS, the average age of diagnosis of hearing loss is 30 months. While awaiting diagnosis, children are often referred to psychology/autism services for behavioural issues, taking up unnecessary resources. In most cases, delayed diagnosis causes life-long harm to these children, not to mention the distress and trauma their parents experience.
UNHS: Stumbling Blocks
In 2009, €500k in funding was provided for the introduction of newborn hearing screening in Ireland. This initial funding of €500k was carried forward to 2010 and the HSE south region chosen as the pilot region. This has since been reduced to a single hospital in Cork. All the funding for 2010 has been spent and not a single child screened.
A contract to continue the pilot in Cork has been signed. Greater urgency must be brought to the introduction of this service and interim awareness measures provided throughout the rest of the country.
Actions To Take
I am appealing to parents to ask their local elected TDs (Oireachtas.ie) to request copies of the three reports above. This I hope will raise awareness of the issues and focus minds at HSE senior management level on the need to effect the Audiology Review Report Recommendations. While financially the timing could not be worse, politically it could not be more opportune.
Think of the moment you received the shocking news that your child is deaf; the constant worry and struggle to get the best for your child. You owe it to yourself, your child and countless others yet to start this most challenging journey to act to bring about the improvements so desperately needed.
With many thanks in anticipation,
Michael Flynn
Parent/User Representative, National Audiology Review Group 2010
Further Reading:
National Audiology Review To Tackle Waiting Lists
National Audiology Review Seeks Service Feedback
Newborn Hearing Tests Support Early Intervention
Hearing-Aids + Learning = Education
Topics: Irish Deaf Kids | 7 Comments »
December 14th, 2010 at 4:35 pm
Hi Michael,
I was part of the parents group at the beginning of this process. Any chance you or someone would put up a copy of what the letter to the TDs should look like and then we can cut and paste into an email?
Are we supposed to be asking the TDs to obtain the reports for their own reading, or to pass a copy to the parents? I wasn’t quite sure from the post above. Many thanks.
December 16th, 2010 at 12:18 pm
Today’s Galway Advertiser has a piece on this issue. I have also asked Michael Flynn to draft a Word template for the letter to send to TDs and local representatives. The Advertiser’s report shows the issue was raised in the Seanad on Tuesday.
December 23rd, 2010 at 4:46 pm
Hi, any updates on this since last week?
December 28th, 2010 at 10:13 am
Hi Christine, thanks for asking … No further press publicity appears to have resulted from the report’s availability. I’ve just mailed Michael Flynn again to remind him about the letter template you requested. Will post again once a news update is received here.
January 28th, 2011 at 5:27 pm
[...] Parents of Deaf Children Asked To Lobby TDs [...]
March 9th, 2011 at 7:51 am
Michael Flynn is the parent representative in the National Audiology Review Group (NARG). He has no party political affiliations, but went to Carrick-on-Shannon on February 8th to talk with Enda Kenny, at that town-hall meeting which ‘clashed’ with the first live TV debate of GE 2011. Their discussion included audiology services and the NARG’s work. Enda Kenny concluded by committing to publish both outstanding reports within 100 days of taking office. Now, to see what happens …
April 20th, 2011 at 10:00 am
[...] * Parents of Deaf Children Asked To Lobby TDs [...]