Keynote Speakers

Please see below keynote presenters confirmed to present at the conference.  Please check back to this page regularly as additional speakers will be added as they are confirmed.

Click on the presentation titles to read the abstract.

Professor Irene Tuffrey-Wijne

Irene Tuffrey-Wijne (RN, PhD) is Professor of Intellectual Disability & Palliative Care at Kingston University & St George’s University of London. She has close collaborative links with Maastricht University (Netherlands). She has extensive clinical experience in both intellectual disability and palliative care services.

Since 2001, Irene has led a programme of research focusing on intellectual disability, cancer and palliative care. She has published widely and presented her work in the UK and across the world, and is recognised as the leading international expert in the area of palliative care for people with intellectual disabilities. Inclusion of people with intellectual disabilities as study participants and as salaried co-researchers is a key part of her work.

Irene is a founding trustee of the UK based (but international) Palliative Care of People with Learning Disabilities Network, and chair of the Reference Group for Intellectual Disabilities of the European Association of Palliative Care.

Presentation Title: Let’s talk about death, dying and intellectual disability

Dr Andrea Grindrod

Andrea is a Research Fellow and the Projects Manager at La Trobe University’s Public Health Palliative Care Unit. She leads a program of research and practice on public health approaches to palliative and end-of-life care and is a member of the Public Health Palliative Care International Council. Her focus combines research, policy and practice development to support participation in sectors not routinely involved in contributing to palliative and end-of-life care.

Andrea is the developer of the Disability Healthy End of Life Program (HELP), an organisational model developed in partnership with disability services in Australia. HELP, a health promotion approach dying, death and bereavement, is featured as the Australian case study in the World Health Organization’s Global Atlas of Palliative Care (2020).

Presentation Title: Dying with intellectual disability: An overview of end-of-life care for people with intellectual disability in Australia

Tania Thomas

Tania hails from the far North and is of Ngati Kahu, Scots and Irish decent. She is a grandmother of four mokopuna and mother to three daughters. Tania grew up in South Auckland.

She is the Manawhakahaere/CEO of Te Roopu Taurima the largest kaupapa Māori disability support service in Aotearoa/New Zealand. Tania has worked in the disability sector most of her working life and started as an Orientation and Mobility Instructor working in the field of blind and low vision.

Prior to joining Te Roopu Taurima she was the Director of the Whānau and Family Knowledge Centre at the Families Commission. Tania has also held the role of Deputy Health and Disability Commissioner responsible for portfolios in disability, Māori health, prisoner health and allied health professionals.

Tania holds governance roles within her Iwi, is on the Board of the National Advocacy Trust, the NZ Disability Support Network and is an Area Governor within Rotary. She has an MBA from the University of Auckland.

Presentation Title: Indigenous intellectual disability services: An insight into a Kaupapa Māori Service in Aotearoa New Zealand

Ani Petera

Ani Petera, her role is National Pou Tikanga. Ani is responsible for upholding tikanga Māori within Te Roopu Taurima o Manukau Trust. Ani co-ordinates the national and regional Korowai Aroha and the regional Pou Tikanga known as Te Roopu Kahui. This is a team of kaumatua and kuia (elders) who provide pastoral care, te reo (language) and tikanga Māori (cultural customs) support to staff, the people we support and their whānau (family). Ani is a valuable member of the Senior Management Team at Te Roopu Taurima, having started her career as a support worker after which she became an Advisor in the Human Resources team. Ani’s late husband was the whānau representative on the Te Roopu Taurima Board and provided work experience for some of the people we support. Ani’s daughter is supported by Te Roopu Taurima.

Presentation Title: A deeper insight into indigenous intellectual disability services: Whānau (family) perspectives and the impact of COVID-19

Dr Kelly Tikao

Dr Kelly Tikao (Waitaha, Kāti Māmoe, Kāi Tahu) is a Kairangahau Māori/Senior Māori Researcher with the Donald Beasley Institute. In 2020, after a long juggling act, she completed her PhD at the University of Canterbury on Ngāi Tahu customary birthing practices. For Kelly, research is a relationship built on integrity and respect. It is not only about what the research team can learn from the participants, but how participants can be empowered by the research process to fully understand what they are a part of, and how their knowledge and experiences can help others. Kelly began her research career as a registered nurse working in the community for Māori and mainstream health services. Amongst her career and whānau demands, Kelly holds space for her creative endeavours. She pursues a part-time career in radio broadcasting for independent and national radio stations, and dabbles in documentary making.

Professor Julian Trollor

Julian is a neuropsychiatrist and holds the inaugural Chair of Intellectual Disability Mental Health at the University of New South Wales (UNSW). He also heads the Department of Developmental Disability Neuropsychiatry (3DN) within the School of Psychiatry at UNSW.

Julian and his 3DN team work to improve health policy, practice and supports for people with an intellectual or developmental disability. The team is involved in teaching, training, health promotion, and the development of educational resources.

3DN conducts research with high translational benefit to the disability and health sectors and provides consultancy of the highest standard, including clinical consultations, advocacy and contributions to policy and legislative reviews.

Presentation Title: Systemic neglect of the health care needs of people with intellectual disability: evidence, implications and actions

Professor Nick Lennox

Professor Nicholas Lennox was the Director of the Queensland Centre for Intellectual & Developmental Disability (QCIDD), at the University of Queensland.

He has provided physical and mental healthcare to adults with developmental disability over a 28-year period in Melbourne and Brisbane. He has also lead innovations in education and applied research, which has changed healthcare delivery and education. Most notably, he lead three complex pragmatic randomised controlled trials of the Comprehensive Health Assessment Program (CHAP).

He feels passionately about improving the health and health care of people with developmental disability, especially when this is driven by empowering adults with a disability, their families and supporters, and healthcare providers. Since ceasing clinical practice in 2018, he has continued to work in the areas of advocacy, education and research. In April 2020, he asked to join the Federal Health Department as the Senior Medical Advisor on Health & Disability.

Presentation Title: Health and People with Intellectual Disability – The flow of change in policy and practice looking back, and into the future

Dr Deborah Chinn

Deborah worked for many years as a clinical psychologist in publicly funded specialist health services for people with intellectual disabilities before taking up an academic role at King’s College London. Deborah continues to draw on the insights she has gained in practice about both the systemic and the everyday exclusions experienced by people with intellectual disabilities and also their creativity and resilience. Deborah has an ongoing interest in using Conversation Analysis to examine how people with intellectual disabilities experience health and social care interactions. She is also involved in a three year project exploring the quality of staffed group homes for people with intellectual disabilities using participatory photography with residents.

Presentation Title: Easy language, Easy Read: what do adapted written English formats achieve for people with intellectual disabilities?

Jemima McDonald

Jemima MacDonald holds a bachelor of Speech and Language Pathology, a Master’s degree in Developmental Disability, and Certificate IV in Training and Assessment.

Jemima has worked in the disability field for 13 years in Australia, Malaysia, Singapore and Canada. She has worked in a range of areas in the disability space such as Research and Evaluations, Social Inclusion, Sexuality, Inclusive Higher Education. At CID Jemima leads a team of Easy Read Translators, designers and testers. She also facilitates Easy Read training for external organisations. Jemima is passionate about the right to accessible information for all people, so that they can make choices, and live a full life.

Pamela Darling

Pamela Darling has been working at Council for Intellectual Disability for 3 years as an Inclusion Projects Worker. Pamela has worked on many different projects at CID including in employment, health, and inclusion in the community. Pamela has been testing Easy Read documents for over 2 years. She is passionate about Easy Read because she believes everyone has a right to information in the community.

Pamela is passionate about everyone having the same rights and opportunities especially women. Ella has spoken a lot about how important it is for people with disability to have employment including on The Drum on the ABC.\

Pamela loves meeting new people, experiencing new things and travelling to new places. She also loves baking and cooking with her favourite recipe being cheesecake.

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