A Better Start for Children with Cri Du Chat Syndrome

22 Oct

Today is a day to celebrate. News of the extension of the Better Start For Children with a Disability Package is a bittersweet victory for many families who have been fighting for their children’s eligibility, but who are also keenly aware and empathetic to the disappointment of so many families whose children have still been excluded by this package.

The Better Start for Children with Disability (Better Start) initiative includes:

  • up to $12,000 in funding for early intervention services and treatments for eligible children
  • additional assistance for eligible children who live in outer-regional, rural or remote locations to help with the costs of accessing services
  • a Medicare item for the development of a treatment and management plan for eligible children up to the age of 13
  • Medicare items for up to four allied health diagnostic services, the results of which contribute to the development of the treatment and management plan, and
  • Medicare items for up to 20 relevant allied health services in total for each eligible child up to the age of 15 provided the treatment and management plan is in place before the age of 13.
    (For more information, click here)

News of the Better Start Funding criteria was our family’s first taste of inequity in relation to Claire’s disability. Everything we read about raising child with Cri Du Chat Syndrome indicated that quality early intervention was vital to allow her to meet her full potential. Therapists we worked with in the early days reinforced this idea, as did our interactions with CDCS families world wide. Yet, due to the relative rarity of the syndrome, and a lack of research-based evidence that early intervention benefits children with CDCS, Claire’s syndrome was originally not one of the few listed as eligible for this package of financial support.

For almost two years, the words “Better Start” have brought me much frustration, anger, disappointment, and bewilderment. How on Earth can the government get away with this blatant discrimination against minority groups? How injust was it that because Claire’s disorder was so rare, there was no current research and therefore no real ‘proof’ that early intervention would work at all? How unfair it is to suggest that some children deserve a “better start” more than others. David from the Australian Rubinstein Taybi Syndrome Support Group created this video that clearly articulated the frustration felt by many Australians:

When an independent review of the funding package was released late last year, it articulated everything we already know about the benefits of early intervention. Cri Du Chat Syndrome and another handful of rare conditions were recommended to be made eligible for the funding, but I was still disheartened. This was good news for Claire, but by this time I had made good friends with many parents of children with other special needs who were still deemed as ineligible. I felt like we were about to be shifted from the “have nots” to the haves”.

Almost a year later, here we are. We are on the “have” list, or will be by January 1st anyway. I must celebrate the achievements of our Cri Du Chat families for raising the profile of Cri Du Chat Syndrome. This would not have happened without the support of many extended family and friends, who have respectfully talked about our children, shared our stories and in many cases, written to or spoken to their local, state and federal government representatives. What you have done to help raise our profile has already made a significant difference to many families.  Thank you.

However, this leaves the “have nots”. It was with much disappointment that I read the new eligibility statement today, discovering that it still neglects to encompass so many of our friends, and other children all across Australia, who really deserve a better start. Early intervention is vital for ALL children with a disability. A more generalised statement of eligibility would be more beneficial than diagnosis-based assessment. It also needs to be said that when children reach 6 or 7 years of age, there potential to learn does not cease, and their needs for continued support need to be considered. I feel a particular disappointment tonight for our CDC families who have narrowly missed eligibility due to their child’s age, despite fighting for inclusion in these packages (and similar) for a number of years.

Advocacy for these children requires energy and determination, and maintaining these qualities can be challenging in the face of despair. Please help these families to be heard by following their journey on Facebook or by signing the online petition.

I am not naïve and I do realise that there are not unlimited funds available, but I do feel that a more equitable expenditure of funds across areas that are in significant need of support would be beneficial.

The inclusion of more disabilities in the eligibility criteria today is at least a step in the right direction. I commend families of children with Prader‑Willi, Williams, Angelman, Kabuki, CHARGE, Cornelia de Lange, Cri du Chat and Smith‑Magenis syndromes and microcephaly for their continued advocacy for their children. Let’s celebrate this as an achievement. I encourage our friends whose children have diagnoses of different conditions to be proud of your efforts too, and to continue your advocacy for your children. Know that others will be continuing to promote this inequity and supporting your efforts as best we can. As a united force we have a much better chance of being heard.


One Response to “A Better Start for Children with Cri Du Chat Syndrome”

  1. Jemima MacDonald February 6, 2014 at 9:16 am #

    Hi Clare,

    Have you seen the new Senate inquiry into Speech Pathology services in Australia. You should have a look and possibly write a submission reinforcing your thoughts on funding and early intervention.


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