A quiet reflection from Sym Gardiner, the editor of 2ears2hear.
Today has been an amazing day. It is poignant to take a moment to reflect on what led up to today’s fantastic announcement about bilateral funding by Minister Ryall.
In September 2012 2ears2hear was started.There were three goals. To advocate for better education support services for kids with cochlear implants. To advocate for government funding for bilateral cochlear implants. And to provide a resource for parents.
We soon developed a fantastic resource of information for parents. We were helped by a UK website – 2ears2hear.co.uk – which had been left running. We plagiarised that website for all it was worth.
We then started to talk with the Ministry of Education about the provision of education support services for kids with cochlear implants. In a sense we got no where. The Ministry is an amorphous mass that has little real regard for the needs of children. However we have been fortunate that the Cochlear Implant Programmes have effectively bypassed the Ministry and developed some very good service provision. We also learned of various ways of crafting what our children need out of the Ministry system. We now have a more informed, connected and vigilant parent base who are much more demanding of those whose job it is to help our children and families.
It became apparent pretty quickly that the big area where we could have an impact was in raising awareness of the benefits of bilateral (two) cochlear implants for children. This was really our core purpose – hence the name 2ears2hear.
We began an active campaign of raising the profile of families fund-raising for their child’s second cochlear implant. We contacted anyone and everyone who would listen to us – even a few who wouldn’t listen to us. And eventually we worked our way up to Minister Ryall. All the time, we honed our arguments – landing on the Better, Cheaper, Safer catch cry.
After writing to the Minister, in July 2013 we formally met with Phil Wysocki and Pat Tuohy, two high ranking Ministry of Health officials. This meeting could only be described as terse. The Ministry at that point were actively arguing for the status quo that one cochlear implant was enough. We were fortunate to get agreement from Phil and Pat that they would undertake a review and we committed to provide them with the masses of research we had collected.
At that same time we had begun our petition campaign. 2ears2hear operatives from Cape Reinga to the Bluff gathered signatures tirelessly. Eventually we collected 1326 signatures and in Nov 2013 we presented the petition to Mojo Mathers MP (with Barbara Stewart MP supporting). Mojo has been hugely supportive of our campaign.
We continued our communication with the Minister, Members of Parliament and officials and at the same time got an invitation to present a written submission to the Health Select Committee. This submission encapsulated all our arguments.
While this was happening the Ministry officials were beavering away. They were fulfilling their commitment to us to research this area. We were very fortunate to have Julia Sarant visit New Zealand during this time. Julia Sarant is the leading research in the field of outcomes for children with cochlear implants. The Hearing House and SCIP cochlear implant programmes had arranged for Julia to visit parents but she made time to talk with the Ministry officials. Her research proved to be decisive.
Last week we meet again with the Ministry officials, Phil and Pat – just shy of 10 months since our first meeting. Our meeting was much more pleasant but they were very reticent to share anything other than they had completed their work and it was with the Minister. This was fascinating to us as we had heard an announcement was imminent from numerous sources. Wellington is a very small place.
Which brings us to today. Today’s announcement at The Hearing House by the Minister is fantastic. When we had discussed what we would like to see from the Ministry, we had said we would like:
- All children identified via newborn screening to be offered bilaterals in 2014
- Added in 2015 all new child cochlear implants to be offered bilateral
- Added in 2016 all children yet to hit school to be offered bilaterals
- Added in 2017-18 all children in primary school to be offered bilaterals
Today’s announcement provided 1, 2 and 3 in one giant hit in 2014/15. And we got the provision of support and updates for the 80-90 existing children whose parents had already fundraised to provide a second implant.
When we quietly sit back and reflect on what we were aiming for and compare it to what we got for kiwi kids who have profound hearing loss, this campaign has been shockingly successful. To coin a phrase – beyond our wildest dreams.
So what now for 2ears2hear? Frankly, now is a time to celebrate. And that is precisely what we are currently planning.
But after that in many respects our job is done. Our resources role is being picked up by some excellent international websites, the manufacturer websites and a fantastically supportive and positive cochlear implant community Facebook group – NZCIG. The education support side of things is addressed as best as it can be. And now the bilateral funding issue has for all intents and purposes has been addressed (bar a few older children who have one implant and are also good hearing aid users on their other ear).
So over the next few weeks we will decide whether to retire 2ears2hear. We will talk with our families to see where the needs are. It is however gratifying to be made redundant and in many senses, it is the ultimate badge of success.
One final note: 2ears2hear has always been about parents helping parents. In our case we have travelled the difficult path of fighting for the best services and opportunities for our children who have profound hearing loss. Our aim has been to help parents following in our footsteps by smoothing the road a little. Removing the pressure of finding $50k just when you have a new baby is a good bit of smoothing. It is our hope that parents who benefit from this change announced today will in turn ‘smooth the road’ for the next generation of families with children who have profound hearing loss. It is after all a road that is ridiculously bumpy.