2ears2hear has three foci. The first and most pressing is to encourage the New Zealand Government to fund bilateral Cochlear Implants for all children who clinically can benefit from them – as opposed to the one currently funded. The second is to encourage and inform parents around issues to do with their child getting and using Cochlear Implants. The third, but still very important focus, is to encourage those organisations in New Zealand who fund and provide the therapy and support children with Cochlear Implants and their families need to adopt international best practice. This third focus has taken a back seat while we push the bilateral funding issue.
However recently the American Academy of Pediatrics published a Statement of Endorsement entitled Supplement to the JCIH 2007 Position Statement: Principles and Guidelines for Early Intervention After Confirmation That a Child Is Deaf or Hard of Hearing. This was published in March 2013 and makes a very important contribution to the issues around best practice therapy and support provision.
The Statement sets out twelve best practice expectations or goals for all hearing related early intervention. When compared to the service offerings currently provided in New Zealand, there are some gaps. Of particular note are goals 1, 6 and 7:
Goal 1: All Children Who Are D/HH and Their Families Have Access to Timely and Coordinated Entry Into EI Programs Supported by a Data Management System Capable of Tracking Families and Children From Confirmation of Hearing Loss to Enrollment Into EI Services
Goal 6: All Children Who Are D/HH Should Have Their Progress Monitored Every 6 Months From Birth to 36 Months of Age, Through a Protocol That Includes the Use of Standardized, Norm-Referenced Developmental Evaluations, for Language (Spoken and/or Signed), the Modality of Communication (Auditory, Visual, and/or Augmentative), Social-Emotional, Cognitive, and Fine and Gross Motor Skills
Goal 7: All Children Who Are Identified With Hearing Loss of Any Degree, Including Those With Unilateral or Slight Hearing Loss, Those With Auditory Neural Hearing Loss (Auditory Neuropathy), and Those With Progressive or Fluctuating Hearing Loss, Receive Appropriate Monitoring and Immediate Follow-up Intervention Services Where Appropriate
The data collection and use of norm referenced testing is very limited in the NZ context. There is no standardisation between service providers. There are some clusters of good data sets, but these are for small segments of the children who have some form of hearing loss (referred to as D/HH in the statement).
Successive reviews and their subsequent implementations have dropped the ball on this issue over the last decade or two.
If there was only one change to be made in all the systems, protocols, policies and providers involved in supporting children with hearing loss in New Zealand, the most beneficial change that could be made would be to implement a high quality, norm referenced monitoring and data management system. Unfortunately this is not a major recommendation of the piloting of changes currently being undertaken by the Ministry of Education.