DOCUMENT

Update from Denise Denise Ganley, Member Services Advisor, shares her recent advocacy and awareness work with us. NEWS ROUNDUP Part of the Member Services Advisor role is to ensure that MDANZ maintains its role as a specialist information provider, maintaining clinical networks, revising and updating information, promoting awareness and advocating for improved care standards for the community that we serve. Since December 2023, I have been advocating for MDA with other organisations at a national level. I am the Management representative on the Disabled People’s Organisation Collective (DPO) where MDA is one of 6 organisations providing input to government departments. The Disabled People’s Organisations have a partnership with Government under the Convention. As part of this partnership, the Government requires high level strategic input from Disabled People’s Organisations around rights-based approaches and/or decision-making. This is covered by Article 4.3: In the development and implementation of legislation and policies to implement the present Convention, and in other decision- making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations . This input may take various forms ranging from technical advice through to a representative speaking on behalf of their Disabled People’s Organisation and/or the DPO Coalition. Disabled People’s Organisations need the process for input and representation to be clear so that the overall partnership under the Convention is effective for both Disabled People’s Organisations and Government. MDA is one of 19 organisations that have joined together as the Neurological Alliance to highlight the issues for the 1 in 3 people affected by a Neurological condition in NZ. The current work the Neurological Alliance has focused on has included a briefing to the incoming Health Minister. I have been working closely with Rare Disorders and have attended three meetings for groups who come under the Rare Disorders umbrella, discussing how we can help bring more focus on the issues affecting people in the Rare Disease community. Don’t forget that Rare Disorders Day is the 29th February and March is the awareness month. More info on Rare Disorders Day can be found on page 6. I have also been a part of a meeting with Access Matters to discuss the progression of the Access Legislation which is currently on hold. There is an online petition and march to Parliament on the 7th March. MDA are also part of the DIAS (Disability Information Advisory Services) collective, and I’ve attended two meetings at ILS in Royal Oak, Auckland, working with other organisations on how we can improve our reporting to Whaikaha (Ministry of Disability Issues) on the information services MDA provides. Our IBM group continues to meet regularly. There was an ‘in person’ meeting in Auckland and an online meeting with Dr Matt Phillips – (Metabolic Neurologist) who presented a talk on a ketogenic diet and IBM. At a local level, LynnWilliams (Northern Branch Fieldworker) and I met with the Wilson Home Trust to see how we can work together more closely. The Fieldwork staff were fortunate to have Stephen Parkinson from True Colours (Hamilton) present at the Fieldworker team meeting to discuss the services they provide to young people with serious conditions. Comfort Cough The Co fort Cough is an excellent easy to use controls. It can be set up by a clinician in auto mode, and used in the home by the patient or caregiver. breathingandmedical.co.nz | solutions@breathingandmedical.co.nz | 0800 335 333