Seeking direction and a voice from Māori

1. Seeking direction and a voice from Māori Belinda Burnett, Chief Executive Officer & Patience Stirling, Piri Toto Delegate Haemophilia Foundation of New Zealand (HFNZ)

3. Outcome of 2000 HFNZ Strategic Plan = Engage with Māori within community. • 9 years later still no progress as task “too big” First Commitment

4. Staff initiated following National Council directive • Independent Facilitator used: • Māori • Used to working within health sector • Had experience in setting up roopu • Had knowledge of what to include in a Terms of Reference • 18 people attended First Hui in 2009

5. Discussion on NgaHiahia (objectives) and Mate Toto (identifying as Māori) and living with a bleeding disorder • What are your experiences? • How can HFNZ best support our Māori community? • How can or should Māori be more involved with HFNZ? • Recommendations • Creation of a dedicated position for Māori on HFNZ National Council • Hold Huiin 3 – 4 months to develop a Terms of Reference for Māori Focus Group • Consider dedicated Māori fieldworker Outcomes of First Hui

6. Second Hui Name chosen = HFNZ Roopu Terms of Reference drafted

7. Changes to the HFNZ constitution:- • HFNZ recognise the role of Māori as tangata whenua (first people of the land). • Māori Representation (regional & National Council) • All HFNZ members who identify as Māori may be considered part of the Māori membership • HFNZ to organise Hui (meeting) to discuss and establish matters of importance to Māori with respect to their needs as people with bleeding disorders. Then what happened?

8. 2012 - Kaumatua/Kuianominated to act in an advisory and guidance role • 2013 - Roopu changed their name to Piri Toto (the blood that binds) • HFNZ have introduced Māori tikanga at every HFNZ hui • Incl. Staff Meetings, National Council Meetings, Camps, Educational Workshops) • Examples: Changes to HFNZ practice

9. Self-governing 3 national meetings / year and bi annual Maraenoho(camp) Growth of members who identify as Māori by 175% Piri Toto Today

10. “Kia hiwarakiahiwara, Kia hiwarakiteneituku, Kia hiwarakiteratuku, keipuruakoekitetoto, keipuruakoekitetoto, piritonu, piritonu. Tiheimauriora. Piri Toto Charter (2013) • Mission • Piri Tata • Piri Whanau • PiriAkona • Piri Aroha

11. Piri Toto Charter (2013) PIRI TOTO PIRI TONU We will continue to commit ourselves to Piri Toto by maintaining EFFECTIVE LEADERSHIP and open communication. PiriTonu strategy is to plan and organise annual Maraenoho and region activities to provide opportunities to meet and mihi new whanAU. Also during HFNZ gatherings taking the opportunity to enhance whanAUngatanga. He tohuwhakamaumahara We will remember those who have suffered and died and worked hard for the betterment of this organisation – moemai, moemairakoutou. Piri Toto gives recognition to all the stake holders of this cause, because without them we would be nothing. • It is every Māori who carries the haemophilia gene are unique as they encompass this attachment. • By making that connection to all Māori on the HFNZ database and establishing an action plan that is based on tikanga, values and beliefs that is imperative to this kaupapa being successful. • Kei wheaahAU? The AU or ‘the one’ person who is identified in whanAU or whanAUngatanga – building positive relationships with the individual, whanau and the extended family. • We hope to attain this connectedness by upholding TE TAHA MAORI, a collaborative approach towards doing things in a Maori way, for example: kaumatua/kuia, tuakana/teina, kanohikitekanohi and Maraenoho.

12. Piri Toto Charter (2013) PIRI TATA • Beginning with our seed, we have developed a strong PiriTata whanAU unit in Auckland. This has proven to be very successful; the strategy now is to reach out to TautokoPiri Toto whanAU throughout Aotearoa. • We believe it is important for each individual to share their whakapapa and their Haemophilia whakapapa, express their own personal journeys with Haemophilia, their struggles, coping strategies and what works well. By way of korero we continue the connectedness of Piri Toto.