Parent Empowerment

1. Parent Empowerment Local and Global Initiatives

4. GPOD + ANZPOD

5. GPOD - Global Coalition of Parents of children who are deaf or hard of hearing • ANZPOD – Australia and New Zealand Parents of Deaf children

6. GPOD and ANZPOD POD Parents of Deaf Children

7. GPOD GPOD The Global Coalition of Parents of children who are deaf or hard of hearing (Web: http://www.gpodhh.org)

8. GPOD

9. GPOD Jodi Cutler Del Dottore

10. GPOD Jodi Cutler Del Dottore Janet Des Georges

11. GPOD Jodi Cutler Del Dottore Janet Des Georges Leeanne Seaver

12. GPOD L-R: Ruth Wallace, Pauline Walker, Roz Keenan, Ann Porter, Jodi Cutler Del Dottore, Janet Des Georges, Leeanne Seaver and Sean Moran

13. GPOD “As parents of children with a hearing loss, and representatives of parent organisations, how could we ensure that the needs of families and the important role families play in the development of EHDI programs took centre stage at this last opportunity to reach a global audience of people developing, implementing and overseeing newborn hearing screening and intervention services around the world?”

14. GPOD Professor Ferdinando “Ferdi” Grandori

15. GPOD

16. GPOD GPOD MISSION STATEMENT The Global Coalition of Parents of children who are deaf or hard of hearing is an international collaboration of parent groups dedicated to promoting systemic protocols and practices which encourage informed choice and the empowerment of families with a deaf or hard of hearing child throughout the world.

17. “…..Still, one of the great omissions in too many intervention programs is the crucial role of parents within the process. Implementing improved systemic protocols and practices which encourage informed choice and the empowerment of families with children who are deaf or have hearing loss must be a fundamental objective to ensure the effectiveness of programs worldwide” http://www.nhs2010.org/nhs2010/

18. GPOD

19. GPOD

20. GPOD GPOD survey • Available online

21. GPOD GPOD survey • Available online • Translated into Arabic, Cantonese, Mandarin, Spanish and Italian

22. GPOD GPOD survey • Available online • Translated into Arabic, Cantonese, Mandarin, Spanish and Italian • 600 respondents

23. GPOD GPOD survey • Available online • Translated into Arabic, Cantonese, Mandarin, Spanish and Italian • 600 respondents • 23 countries

24. GPOD Recommended Family Support Practice in Universal Newborn Hearing Screening • Current research into family support practices • Input from parent leaders and parent support organisations worldwide • Feedback from respondents to the GPOD survey. To be presented at NHS 2010 – June 9, 2010

25. GPOD…

26. ANZPOD – May 2009

27. ANZPOD Why? • Development of national standards for universal newborn hearing screening in Australia • Newborn hearing screening summit in Canberra

28. ANZPOD Tina Carter – POD QLDBerenice Ferguson – POD Northern SydneyLuke Halpin – Canberra Deaf Children’s AssociationNaomi Higgs – Parents of Hearing Impaired South AustraliaLeonie Jackson – Parent Council for Deaf EducationRoz Keenan – Deaf Children AustraliaKate Kennedy - Parent Council for Deaf EducationWendy McMullen - Canberra Deaf Children’s AssociationAnn Porter – Aussie Deaf KidsJo Quayle – Newborn Hearing Screening Steering CommitteeSue Rayner – North Shore Deaf Children’s AssociationGene Reardon – Deaf Children Australia

29. ANZPOD Parents wish for: • Parent – professional partnerships – “The parent professional relationship should be seen as a partnership between two experts. The planning and delivery of services needs to be a collaborative process between parents and the professionals and services supporting families.”

30. ANZPOD Parents wish for: • Equal access to newborn hearing screening and high quality evidence-based care for all babies and their families.

31. ANZPOD Parents wish for: • Informed choices – “Being informed is necessary to make a considered decision. But being informed is not sufficient – families also need choices, including access to different communication options, convenient service delivery, and the ability to change their decisions when necessary.”

32. ANZPOD Parents wish for: • Family-centred services – “Services should empower families and help them to develop new strengths and competencies to meet the ongoing needs of their child with a hearing loss.”

33. ANZPOD

34. Australian Government Department of Health and Ageing ANZPOD Australian Population Health Development Principal Committee Screening Subcommittee Neonatal Hearing Screening Working Group

35. ANZPOD The ANZPOD standards outline • Equity of access to all aspects of the service • Appropriate and adequate support • Confidential and culturally appropriate care • Well-trained, qualified and skilled professional staff and mentors • Comprehensive unbiased information throughout the screening, diagnostic and intervention stages to allow informed decision making • Evaluation of service performance in terms of outcomes for deaf children and their families

36. ANZPOD

37. ANZPOD “All Australian Governments recognise the importance of ensuring that infants born with hearing problems are identified and treated as soon as possible.  COAG has agreed to ensure that by the end of 2010 every child born in Australia has access to screening for congenital hearing impairments.” (COAG Communiqué – Council of Australian Governments’ meeting – 2 July 2009)

38. “It would be great to be able to just go to one service that at least has all the places I could go to for support. As I find that anytime I need help in finding something, it is not an easy or simple task.” (GPOD survey) ANZPOD • Families want a professional who can guide and support them in the early years – an independent family support worker.

39. “I think that support services need to have the information about ALL options available to give to parents – without bias” (GPOD survey) “I think everything should be made an option and the pathway to receiving thathelp made clear and let the parents decide what path to take.” (GPOD survey) ANZPOD • Families want meaningful and relevant information that allows them to make informed decisions. They want to know about all their options, not just options available to them locally. They can then decide what is best for their child and family.

40. “It is very important that parents are supported in the choices they make for theirchildren, by both educators, other parents and their extended families. “ (GPOD survey) “Family support should be that, family support, not criticism for the choices you make for your family.” (GPOD survey) ANZPOD • Families want to be supported in the decisions they make so they can work together with the professionals to ensure the best outcome for their child.

41. “I think the best support can be parents who are in the same situation. A lot of myproblem was feeling so alone and once I met other parents of deaf children itreally helped me accept my son's diagnosis.” (GPOD survey) If the "sponsor" or organization could get the names of newly identified kids/families. So they could make first contact. New parents often don't have any ideas of what to ask or say to someone they don't know.” (GPOD survey) ANZPOD • Families want contact with other parents soon after diagnosis - but making that first contact is daunting for new parents.

43. Thank you! Ann Porter info@aussiedeafkids.org.au www.aussiedeafkids.org.au