What's happening at Down Syndrome Australia? Here's an update from our CEO, Ellen Sladzien.

The recent public gaffe by a senior Human Services Department official who could not indicate whether Down syndrome could be cured, is just a timely reminder of the importance and urgency of having effective national advocacy to represent people with Down syndrome and their families. There continues to be a serious lack of understanding of Down syndrome and intellectual disability in our community and even amongst government officials.

The last two weeks, I have been focusing on meeting with politicians and senior government officials to advocate on a number of key issues.

These have included:

• A meeting with Senator Rachel Siewert to discuss issues around prenatal testing and support for our plans for a World Down Syndrome Day event. Rachel is a great supporter of Down Syndrome Australia and we discussed the importance of women having access to good information around prenatal screening and appropriate support and connections when a high probability result is received.

• A meeting with a senior advisor to Christian Porter to talk about issues which have been raised with DSA on the implementation of NDIS. We also discussed DSA’s recent submission to the DSP inquiry and the need to remove requirements for medical reviews for people with a chromosomal condition. We also discussed concerns around migration issues for people with Down syndrome.

• A meeting with a senior advisor to Minister Ley to discuss the applications for the non-invasive prenatal screening to be listed on the MBS. Again we discussed the need for better information and support for women.

• A meeting with Senator Claire Moore to discuss migration and plans for World Down syndrome day.

I have also been involved in a range of stakeholder meetings including:

• Consultation with the Disability Discrimination Commissioner- which included discussions on NDIS, employment, education, and migration

• NDIS CEO meeting to get briefings from the NDIA and provide feedback on the information we are receiving about people’s experience with the NDIS.

We have also been responding to various issues that have been playing out in the media including:

• A Letter to the editor of Mamamia regarding a post which did not provide appropriate information about Down syndrome and propagated myths around “suffering”

• Response to the public hearing on DSP and the lack of awareness of senior staff to very basic information about Down syndrome.

Work has also been underway for World Down Syndrome day next year including a request for stories and photos for a social media campaign.