The disability community was shocked by Whaikaha’s announcement on the 18th March and we are aware of the anguish it has caused in our community.

The NZDSA has been advocating on behalf of its members, as we believe that the changes to the purchasing guidelines restrict self-determination and do not align with the EGL approach. We are actively networking with like-minded organisations so that we can collectively address our concerns.

We believe that it’s crucial for both the government and Whaikaha to understand the impact of their recent announcement on people with Down syndrome, their parents and whānau. We need to amplify our voice to ensure that the progress achieved so far is not eroded and that the “pause” on flexibility is reversed. The NZDSA fully supports the Enabling Good Lives approach, which was developed by disabled people and whānau and has been demonstrated for a decade. We believe that it’s time for this approach to be experienced throughout New Zealand.

We will continue to advocate for our community but we need your help to amplify the voice of the Down syndrome community.


How can you help to amplify the voice of our community?

You can share your story by either writing to or visiting your local MP 

The most effective thing you can do right now is to share your story.  You can visit your local MP or write to your local MP Members of Parliament – New Zealand Parliament (  

Tell them that you are in their electorate and that you are impacted by these and ask for a return to flexible funding. 

  • The National Enabling Good Lives leadership group have provided guidelines and thoughts if you want to write a more generic letter or email.   We suggest you read these guidelines and add a few of the suggested sentences in your letter. 

  • If you are willing to share more personal details then we have attached a template of a letter/email which you could use to write to our MP.   We would suggest that you also add a sentence or two from the NEGL guidelines. Click here to access the letter template.

  • Priyanka Radhakrishnan has expressed that she is keen to be sent details of individual examples. The more specific the better. She will anonymise these and use them to ask questions in the house


You can complete surveys collecting information 


You can sign a petition


You can attend local meetings

These meetings will be advertised on a range of Facebook posts.

Whaikaha updates about changes to Purchasing Rules and EMS

Whaikaha – Ministry of Disabled People has updated its webpage about the changes to Purchasing Rules and Equipment Modification Services (EMS), including NZSL and accessible formats, and answers to questions about transport, family carers, and EMS.

The Key messages for the sector document have been added to the Q&As webpage

In addition