Who we are

    Overview

    We're the national peak body that represents children and young people (aged 0-25) with disability. CYDA is a not-for-profit community-based organisation that was officially incorporated as a company limited by guarantee in November 2009.

    The organisation was initially established in 2002 as the Australian Association for Families of Children with Disability. CYDA receives its core funding under the Department of Social Services (DSS) national secretariat program.

    We also receive project funding from:

    • DSS to provide information, referral and systemic advocacy regarding the experiences of children with disability in relation to the work of the Royal Commission into Institutional Responses to Child Sexual Abuse
    • DSS to support the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
    • the National Disability Insurance Scheme (NDIS) Information, Linkages and Capacity Building (ILC) Program
    • Equity Trustees.

    CYDA provides a link between the direct experiences of children and young people with disability and their families and the Federal Government and other key stakeholders. This link is essential for the creation of a true appreciation of the experiences of and challenges for children and young people with disability and their families.

    History

    CYDA was incorporated as a company limited by guarantee to advocate at the national level for children and young people aged 0 to 25 years in 2009. CYDA was formerly known as the Australian Association for Families of Children with Disability.

    Staff

    Mary Sayers – Chief Executive Officer

    BA, Grad Dip HR, MCom, GAICD

    Mary joined Children and Young People with Disability Australia (CYDA) as Chief Executive Officer in July 2019. Over her career she has worked across policy and research, advocacy and service delivery to progress positive outcomes for children and young people, and the broader determinants of social wellbeing. She has family experience of disability as a parent, and is a passionate advocate for the rights of children and young people.

    Her previous roles have been Deputy Chief Executive Officer of the Victorian Council of Social Service (VCOSS) for almost five years; Manager, Children, Young People and Families at the City of Whittlesea; and Associate Director of translational research, policy and service development at the Centre for Community Child Health at the Murdoch Children's Research Institute.

    She was on the Board of Management of QEC Early Parenting Centre for eight years, including two years as chair of the board. She is a current board member of the Australian Council of Social Service (ACOSS).

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    Joanne Ellingworth – Business Manager

    Joanne joined the team at CYDA in October 2013. Joanne has more than 30 years of experience working as an executive assistant and administrator in small business.

    Joanne is extremely committed to progressing the rights of children and young people with disability.

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    Maeve Kennedy – Policy & Program Manager

    Maeve joined CYDA in late 2019. She previously worked in disability policy and projects at the Victorian Council of Social Service (VCOSS), working closely with self-advocates and advocacy organisations and alongside the Disability Advocacy Research Unit. Maeve also facilitated a joint project between Our Watch and Women with Disabilities Victoria focusing on the prevention of violence against women and girls with disability.

    Her background is in policy and economics, including experience working in a number of non-profit organisations and in social policy consulting and program evaluation.

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    Diane McCarthy – National Redress Scheme Project Officer

    Diane joined CYDA in February 2019 as the Project Officer on the National Redress Scheme. Her focus is on achieving systemic change and providing accurate, accessible information and support for young people with disability who are survivors of child sexual abuse to access the Scheme, as well as their families and carers.

    With more than 20 years of advocacy experience working in the disability sector, Diane has always focused on enabling and empowering children and young people with disability, their family and carers, to have their voices heard and acted upon when navigating through systems, policies and changes that affect their lives.

    Diane has lived experience of encouraging and supporting her son with disability to become a strong self-advocate, working alongside him to achieve a fulfilling life whilst continuing to advocate for a more inclusive community.

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    Elga Rodriguez – Policy and Program Adviser

    Elga joined the CYDA team in August 2019 to work on the National Disability Insurance Scheme (NDIS) Information, Linkages and Capacity Building (ILC) Self-Management project for families of children and young people with disability, and to support CYDA policy work.

    With a background in law and public policy, Elga has previously worked in public and administrative law in government abroad and has worked in Australia in the disability sector for nine years promoting diversity and inclusion.

    Elga believes that everyone should have the same opportunities in education, work and civic life and is keen to promote inclusive communities and drive positive change.

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    Sue Tape – Communications Adviser

    Sue joined CYDA in April 2020 to help develop communication and information resources to engage young people with disability and families of children with disability in the Disability Royal Commission, the National Young People with Disability Summit and the National Redress Scheme, among other communications activities.

    Sue’s career experience is in auditing, design and implementation of learning and development at a local, national and Asia Pacific level. Sue is now using her career experience in building an inclusive local community around her family. Sue is excited about the opportunities to share her family's story, connect with other families and be a force for change.

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    Robert Pask – Policy Adviser

    Robert has extensive experience and knowledge of Australian politics and the disability sector. He has played a key role in promoting a policy focus on job retention for people with chronic illness and disability.

    Through his voluntary involvement with boards including the Chronic Illness Alliance and the Consumer Health Forum, Robert has brought into focus the growing cost of healthcare for people with chronic illness using pharmaceuticals and other health programs.

    In 2013 Robert received the Excellence in Advocacy and Rights Promotion Award at the National Disability Awards and the Huntington's Victoria Advocacy Award.

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    Board of Directors

    Alan Blackwood – Chair

    Alan has family experience of disability and has also worked in a range of advocacy and governance roles with people with disability in more than 30 years in the sector. Alan has served on numerous state and national advisory bodies and has previously worked with CYDA on NDIS and education policy.

    He is a strong supporter of inclusive education and the participation of people with disability in their organisations.

     

    Matthew Hill – Director

    Matthew is a senior executive with more than 10 years of experience in governance and board roles involving both the not-for-profit and private sectors. Matthew has a strong interest in providing value and support to communities and associations like CYDA. Over Matthew's career he has developed skills in leadership, building relationships, seizing control of critical problems and delivering on customer commitments.

    Matthew is a father of two children and has family experience of disability. Matthew is extremely committed to progressing the rights of children and young people with disability.

    Julie Mavlian – Director

    Julie is a mother of four children including a young person with disability.

    Julie is currently a Learning and Support Teacher at a NSW public school. She has a Masters in Special Education and has worked with students in a variety of educational settings from preschool through to adult for more than 30 years.

    Julie is a passionate advocate who has worked proactively for the rights and needs of children and young people with disability.

     

    Grace Mills – Director

    Grace is a young person with disability who has been involved with the disability sector in Western Australia since 2013. She has experience in a range of community organisations including Youth Disability Advocacy Network (YDAN), Diverse Leadership WA and VisAbility.

    Grace is currently also involved with the Ministerial Advisory Council of Disability, Telethon Kids Institute Youth Advisory Group and previously was a member of the City of Perth Access and Inclusion Advisory Group.

    Grace believes that the inclusion of young people with disability in the community is crucial for increasing the level of participation and recognition of abilities, particularly in areas such as education and employment and social inclusion through community events.

    Dr Bronwyn Morkham – Director/Secretary

    An experienced individual and systemic advocate, Dr Bronwyn Morkham has worked with state and federal governments in systems policy and improvement. She is presently working with state and federal jurisdictions on the systemic and policy reforms needed to implement the National Disability Insurance Scheme (NDIS), particularly around the scheme’s interactions with other service systems such as health and education.

    Bronwyn has served on a number of state and federal advisory bodies and led development of innovative and collaborative practice solutions in systems working with younger people with disability.

    Bronwyn is committed to the development of community-based services that enable children and young people with disability to live safely and with confidence in the community.

    Jocelyn Neumueller – Director

    Jocelyn is a student with lived experience of disability. She is currently studying Law at Flinders University while pursuing her sporting ambitions of achieving a podium position at the Paralympics.

    Outside of her study, Jocelyn is involved with a number of organisations advocating for and supporting young people living with disability. For the past four years Jocelyn has been selected as the student representative for the South Australian Ministerial Advisory Committee for Children and Students with Disability.

     

    Heather Renton – Director

    Heather is the Chief Executive Officer and Founder of Syndromes Without a Name (SWAN) – Australia. SWAN provides information and support to families caring for a child with an undiagnosed or rare genetic condition. Heather is the mother of two children, one of whom has a rare genetic condition and disability. Heather is a passionate advocate for families who have children with undiagnosed and rare genetic conditions.

    Heather is a member of the Melbourne Genomics Health Alliance Community Advisory Group, the Consumer and Community Advisory Group for the Discipline of Genetic Counselling, University of Technology Sydney, and a moderator for both the FOXP1 and Undiagnosed rareconnect.org communities.

    Heather received a Highly Commended in the Service category at the 2017 Premier’s Volunteer Champions Awards. The Melbourne Genomics Community Advisory Group (CAG), which she is an active member of, won the Outstanding Achievement by a Volunteer – Better Care Victoria Innovation Award at the 2017 Minister for Health Volunteer Awards. Heather is one of the co-authors of the report An Ounce of Prevention, which captured the value of early community engagement and co-design of projects. Heather is the author of the abstract 'Peer Support Groups Play an Important role in ‘Social Precision Medicine’', published in the Twin Research and Human Genetics journal in 2019 by Cambridge University Press.

    Heather received a scholarship to the Women’s Board Leadership Mentoring Program for the period 2017-2018.

    Constitution

    CYDA's Constitution sets out the rules that govern the organisation’s internal management and operations.

    Download a PDF version of CYDA's Constitution (PDF)

    Strategic Plan

    CYDA's third three-year Strategic Plan commenced on 1 July 2017. The plan articulates organisational priorities and guides the work of CYDA's Board of Directors and staff.

    Strategic Plan 2017-2020

    Strategic Plan 2017-2020 (PDF)

    Strategic Plan 2017-2020 (Word)