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SWAN Australia’s Recent Victorian State Election Campaign

Our Victorian SWAN members helped raise awareness with their local politicians of some of the challenges they experience. Even though the election is over, the issues our families face still remain. Feel free to visit or write to your local MP to address the following issues: Please visit: http://www.parliament.vic.gov.au/about/people-in-parliament/ministers to find out who your local member is.

SAMPLE LETTER

Date: XXX

Dear XXX,

We would like to introduce Syndromes Without A Name (SWAN) Australia, a not-for-profit incorporated association and charity. We aim to increase awareness and understanding of the impact and prevalence of undiagnosed genetic conditions within the wider community. We provide information and emotional support to families to assist them with establishing enduring mutually supportive relationships. We want to limit the isolation and the negative social, emotional and financial impacts experienced by families whose child or children have an undiagnosed condition.

We advocate for further funding into genetic research, so that more testing is available, turnaround time on testing is decreased and more accurate results are achieved. We strive to obtain better resources and future pathways for our children without a diagnosis.

We would like to highlight with you some of the issues around parenting/caring for an undiagnosed child:

Clinical exome sequencing for all undiagnosed children to be carried out in Australia and covered by Medicare or absorbed by hospitals:
For a lot of SWAN families, the price of getting your child’s DNA exome sequenced is cost prohibitive. For the price of an exome sequence ($7000.00) you can buy a lot of therapy for your child.

Funding to employ more genetic counsellors to support undiagnosed families:
Currently, there are not enough genetic counsellors to support undiagnosed families or those who receive news of a rare genetic condition. For SWAN families to be fully supported, they need access to genetics counsellors, who can make a difference to parents/carers’ mental health. Whether parents/carers receive a diagnosis or receive negative test results, resulting in no diagnosis, they need support.

Government funding to support undiagnosed children:
We would like to see SWAN children entitled to funding so they can have access to therapy to reach their full potential. Therapy is expensive, with the average therapy session costing $150.00 per hour. Our children fall through the gaps, as they don’t qualify for ‘Better Start’ funding. Our children are disadvantaged enough without depriving them of the therapy they deserve.

More funding for special schools and special developmental schools
The majority of special schools and special developmental schools have to choose between having smaller class sizes or employing therapists. They shouldn’t have to choose. All special schools and special development schools should be able to employ a full time speech therapist, occupational therapist and physiotherapist (if required).

Before and afterschool care offered in special schools and special developmental schools:
The majority of special schools and special developmental schools have a short day – 9.00am to 3.00pm. Without before and afterschool care, it makes partaking in the paid work force extremely difficult for parents/carers. Again this can be detrimental to parents/carers’ mental health, not to mention financial solvency. We also need more flexible work environments for carers wishing to partake in the work force. There are many carers of school-aged children who would like to partake in the workforce and contribute to the domestic productivity of this country, but are unable to do so.

School holiday programs offered in specialist settings for children with a disability:
The majority of special schools and special developmental schools do not offer school holiday programs. A number of SWAN parents and carers, really struggle with their mental health during the holiday period when they are caring for their child full-time. The days are long with limited respite, if any. SWAN Australia would like to have the option to use their child’s school as a venue for school holiday programs and have a specific program with sufficient staff:student ratios to suit their child’s needs.

More all-ability fenced playgrounds throughout the state:
SWAN Australia would welcome the investment in more “all-ability playground” infrastructure. Many of our community playgrounds are not fenced and do not offer equipment that caters for children of all abilities. As a result, many children are excluded when it comes to using their local playground, hence discriminated against for having a disability.

We thank you for your time in acknowledging the challenges SWAN families face and we look forward to working with you in addressing these issues. We welcome the opportunity to discuss our concerns further with you in person. I can be contacted on: T: XXX or E: XXX

Yours sincerely,

XXX
SWAN Australia Parent

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