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Hauraki Waikato Whanau Ora
Tena koutou katoa,
We're very pleased to update you about important financial support available for whanau in Aotearoa who have tamariki with Down syndrome; we hope that you will share this good news with whanau in your rohe who could benefit from this extra support.
Down syndrome is the most common chromosomal condition in the world and every year in Aotearoa between 50 and 80 babies are born with Down syndrome. Research has shown that tamariki with Down syndrome have special physical characteristics that result in many tamariki needing extra help and support with their communication. For this reason the UpsideDowns Education Trust ('UpsideDowns') was created.
UpsideDowns provides ongoing financial support to help any whanau in Aotearoa who have tamariki with Down syndrome. This support is specifically to help with the costs of private speech therapy for tamariki with Down syndrome. This financial assistance is available to members of UpsideDowns every year from birth up to the age of 21 years.
Three funding options available
UpsideDowns has three different funding options for whanau to access therapy from a private Speech and Language Therapist for their tamariki with Down syndrome. The three funding options are:
Option 1: 50% of speech-language therapy costs up to a maximum of $2,000 each year or,
Option 2: 80% of speech-language therapy costs up to a maximum of $1,000 each year or,
Option 3: 100% of speech-language therapy costs up to a maximum of $2,000 each year for whanau experiencing financial hardship (some criteria applies).
Speech-Language Therapists are located throughout Aotearoa and they work with tamariki using different approaches for the individual needs of tamariki. Therapists also work in different settings; many Therapists work with tamariki at their office however some Therapists are able to work with tamariki in their whare, or at a Kohanga Reo, or at a Kura Kaupapa Maori. Some Therapists also use tele-therapy (e.g. using Skype or Zoom depending on internet access).
Keen to know more?
· Attached is our pamphlet in Te Reo Maori, and in English.
· Whanau can also apply online https://www.upsidedowns.co.nz/
Need help to find a registered Speech Language Therapist?
Occasionally there is a waiting list but once an application is approved by UpsideDowns, whanau can then choose their preferred Speech-Language Therapist from hundreds of Therapists registered with the NZ Speech Therapy Association (NZTA). Although UpsideDowns are not able to recommend a particular Therapist, UpsideDowns are happy to help any whanau who might need a bit of help in identifying a locally based (NZTA-registered) Speech-Language Therapist or a Therapist who is familiar working with tamariki with Down syndrome.
Any other information we can help you with?
More information about Down syndrome and the UpsideDowns Education Trust is on our website - https://www.upsidedowns.co.nz/
However if you would like to talk to us about UpsideDowns and our three funding options please contact us by phone 020 4077 2400, or by email on email@example.com
Nga mihi nui,
Click here for the Te Reo brochure for Parents
Click here for the English brochure for Parents
Click here for the media piece that will be released on the General Practice New Zealand website, NZ Doctor and Māori TV
A fully online event, it is the only national hui about advance care planning and shared decision making. The previous hui, held in 2017 in Auckland, was attended by around 250 people. This year’s hui has a strong focus on equity, and features speakers from Aotearoa and overseas.
First up is keynote speaker Hector Matthews, executive director Māori and Pacific Health, Canterbury DHB. The title of Hector’s presentation is ‘Māori lives matter’. Hector will challenge us to confront some uncomfortable truths about inequity, and encourage exploring ways we can truly place people’s cultural frameworks at the centre of their care and wellbeing.
Later in the afternoon we will hear from London-based Dr Kathryn Mannix, who asks ‘How can we reclaim ordinary dying?’ Kathryn worked in palliative care for 30 years, before taking early retirement to work for better public understanding about dying. Her first book, With the End in Mind, was shortlisted for the Wellcome Book Prize.
The hui will be an engaging and thoughtful two days of discussions and exploration about our role in making what matters most to our patients and their whānau the centre of our health care planning and delivery.
To see the whole programme, and to register, go to the event website
Look forward to seeing you there!
Ngā mihi nui
National advance care planning team
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