Post diagnosis support from Trained Experienced Parents and Deaf/Hard of Hearing adults: what is the value?

Phillipa Fuamatu1Catherine Clémot1, Mrs Rosa Romano1

1Deaf Children Australia, Stafford, QLD, Australia

In Queensland, parents who have a child newly diagnosed with hearing loss are able to access support from trained, experienced parents, as well as adults who have grown up with a hearing loss, via the Parent to Parent Program and Life Stories Program. These programs provide families with support and information from the valuable perspective of “lived” experience. In this presentation, three families from both regional and metropolitan areas of Qld will share their experience of receiving this early support post-diagnosis. Several years on, what difference do they think it made to have met with Experienced Parents and Deaf/Hard of Hearing adults within three months of their baby’s diagnosis? What was the impact, then and now, of that early support on their journey?
In a changing environment where NDIS is being rolled out across the nation and technology continues to advance in its applications, were there elements of early parent and deaf/hard of hearing adult support which they considered important in contributing to and supporting “informed decision making”?

Phillipa Fuamatu has four children between the ages of 2 and 11, three of whom have a profound hearing loss, vision impairment, and wear bilateral cochlear implants.  Phillipa has worked as a Support Parent with the Parent to Parent Program for the past 2 ½ years.

Rosa Romano has two boys aged six and three.  Her youngest son was diagnosed with a profound hearing loss at two weeks of age and received bilateral cochlear implants at age 8 months. He now loves painting, counting and reading.

Catherine Clémot is mother to two boys aged six and four. Her four year old son was diagnosed with moderate-severe bilateral sensorineural hearing loss at newborn screening. He wears hearing aids, and these days enjoys a good game of Uno.