Claire, Zoe and I attended the launch of the expansion to the Better Start for Children with a Disability Package this afternoon at the Cerebral Palsy League in New Farm, as representatives for Cri Du Chat Syndrome.
As I sat and listened to Senator Jan McLucas talk about the initial roll-out of the package, the difficulty of declining ‘ineligible’ requests for the package, the decision to commission an external review, and the more recent decision to expand the funding package to include another handful of syndromes and conditions, it was easy to imagine how I would be feeling if Cri Du Chat Syndrome had again been excluded from the list.
As Senator McLucas talked about research-based evidence being available to support the benefits of early intervention in children with the included conditions, I wasn’t sure whether to scream or cry. One of the most disheartening things for me since Claire’s diagnosis has been the lack of literature available and the lack of apparent research into Cri Du Chat Syndrome. There have been a few papers of interest that have been found, and minimal interest in the condition from medical researchers is evident. It was difficult enough to find out that Claire’s genetic makeup is atypical. Realising then that there is limited information as to what this actually means for us was even harder. However, we are very fortunate compared to other families. Many syndromes and conditions have a significantly smaller level of incidence than Cri Du Chat Syndrome. Some genetic anomalies are so rare, some unseen ever before, and so of course, there is no research. Many times, there is not even a name.
As I grappled with the emotions brought with Claire’s diagnosis, I found it really upsetting to find out that because there was no research, there was no access to this funding. It made me feel angry and frustrated, and I felt we were being discriminated against. It made me take action, and it gave me a focus for some of the anger and anxiety that was probably more to do with the diagnosis as a whole, than the sense that we were missing out on $12000 worth of therapy. I had letters to write, I had a story to tell, I had an opportunity to make a difference.
I never doubted that if the Better Start Funding were to continue, that it would be extended to include Cri Du Chat Syndrome. While the documented evidence that early intervention is vital is limited, the families that I have connected with across the world, provide evidence enough. If I had to, I was willing to collect and collate data myself to make a significant case to support this fact. Thankfully, the KPMG report found documented evidence for us. When I first read the report, I again was sure that Cri Du Chat Syndrome would be included, but I was extremely disappointed that there were so many other children that would still be excluded. I almost convinced myself that the package would be ceased for new families, due to the expense involved in its expansion, and due to the quite obvious discrimination that was otherwise likely to continue.
When the news of the January 1 expansion was released, I was shocked. I was happy for our family, and for other families affected by Cri Du Chat Syndrome. I was also happy for families affected by other conditions that would now be covered. However, I was frustrated at the continuation of a diagnosis-based eligibility criteria, rather than an assessment of needs.
Before the expansion, many Better Start-eligible families that we met were genuinely shocked when they realised Claire and other children with an obvious need for early intervention were ineligible for the package. They were unintentionally unaware. WE are NOT.
As a family who will now be eligible for this support, I feel that it is only appropriate that I will continue to promote the inequality of this package. I will celebrate this small victory and thank the government for ‘listening’, but I will continue to explain that they didn’t really hear us right. Use of a label to determine eligibility is the problem.
To other families with Prader Willi, Williams, Angelman, Kabuki Make Up, Smith-Magenis, CHARGE, Cornelia de Lange or Cri du Chat syndromes or microcephaly, I hope that you won’t forget the fight either, and that you will continue to do the good work you have done in advocating for children with disabilities. Just think how you would be feeling right now if your minority group was still missing from the new list.
I thank Senator McLucas for taking the time to make an official announcement of this expansion, and for acknowledging that the government haven’t yet got it right. She was certainly correct in saying that we are in dire need of an NDIS, however I do not believe that this is an appropriate answer for those families being excluded at this time. The time for early intervention is NOW. These families and children just cannot wait.
Claire’s early intervention program is certainly working wonders. There were signs aplenty as she showed off at the launch, but the most impressive moment was a timely round of applause (Claire only!) right after the senator listed the names of the syndromes included. The slow clap would have been gold had it been captured by television crews, but there must have been bigger news in Brisbane today as the media were notably absent. At least Claire managed to lighten the mood for the thirty or so people in the room.
If Senator McLucas takes us up on the offer to officially open our Cri Du Chat National Conference and Family Weekend in March, I will ensure we train her up on the correct pronunciation of the condition – Cree doo shar should do it…Repeat after me….;)