As part of the expansion of the Better Start for Children with Disability (Better Start) initiative, the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), invited me to represent the Cri Du Chat Support Group of Australia at a stakeholder meeting in Sydney on Tuesday.
I was really excited to be given this opportunity, and with help from Mum and Matt I was able to juggle things enough to get down to Sydney in time to have lunch with my brother, to enjoy a little shopping at the QVB, and to enjoy a quiet dinner for one (yes, one!) on Monday night. The only disappointments were not having enough time to see my gorgeous niece and nephews, and having to say goodbye to these beautiful faces at Gold Coast Airport…
Tuesday’s meeting was informative, and I was given further information to pass on the families affected by Cri Du Chat Syndrome, which this morning I added to the group website. I was also able to meet the National President or another representative for each of the support groups for other conditions included in the expansion. This in itself was invaluable.
Led by the FaHCSIA Better Start Team, discussions took place regarding eligibility thresholds for each of the conditions, and I was interested to find out that Cri Du Chat was the most simple to accurately diagnose of each of the conditions covered in the expansion. Through microarray testing, the clinical geneticists present suggested that Cri Du Chat Syndrome could be diagnosed in 99% of cases. One of these geneticists was a familiar face, having given expert opinion of a DVD about Cri Du Chat Syndrome that was put together by one of our parents about 14 years ago.
When discussions turned to the age limits and syndromes for eligibility, I was able to share the disappointment of many of our families who had just missed out, and for our friends with other conditions who have not even had a look in for this package. I was unable to do this without choking up, but it was at that point that I realised that out of the 15 people in the room, I was the only parent who was personally affected by Better Start, both before CDCS was an eligible condition, and now that it is. Each of the other parent representatives had older children (15+) or adult offspring with the newly added conditions. They certainly had a raft of experience and passion to bring to the table. I decided that my contribution needed to be from my perspective as a parent still facing Early Intervention, and being early in my journey with disability.
Senator Jan McLucas was able to attend the meeting for a short time, and again shared some history of this funding package. I was able to express the emotional upset of being told we were ineligible for funding due to a lack of evidence-based research, and explained that to a parent who is facing a rare diagnosis, this can be like a slap in the face. We discussed the importance of provisions being made to support further research. We also discussed the importance of succession planning for therapists specializing in Early Intervention for children with disabilities.
I am excited at the prospect of being considered to further represent Cri Du Chat Syndrome at future meetings and look forward to further raising awareness of the syndrome, and of the families who are affected by it.
Again, I thank each of you who has helped to raise awareness of Cri Du Chat Syndrome, as I believe that this has certainly contributed to the inclusion of our kids in the expansion of the program.