The MRID CodesignKit is an initiative of the Metro-Regional Intellectual Disability Network. It has been produced with the assistance of the New South Wales Agency for Clinical Innovation.
The Metro-Regional Intellectual Disability Network is a partnership model for improving health care for people with intellectual disability in regional and remote areas of New South Wales. It is one of three specialised projects commissioned by the New South Wales Ministry of Health to provide specialised services for people with intellectual disability.
The Metro-Regional Intellectual Disability Network later built on their established ﬂagship model of service provision within South Eastern Sydney Local Health District, by implementing pilot programs in a regional area with limited services. This pilot involved staff from the Kogarah Developmental Assessment Service – a multidisciplinary health service associated with St George Hospital – extending specialist medical disability services into the Illawarra Shoalhaven Local Health District, through an innovative relationship with the disability service and education sectors. The initial focus was on youth with intellectual disability and associated mental health problems living in this region.
The MRID Co-Design kit expands upon this work, and on work done over a twenty year period at Kogarah DAS in working with a group of parents of children with a newly diagnosed medical syndrome, Angelman’s Syndrome. The Angelman Syndrome Association (ASA) was established by this group of parents in 1993 to support, inform, educate,
network, foster research and to advocate for families living with AS. Anne Funke, a mother and co-founder of the ASA, continues to work as a Carer Representative at DAS and is a co-author of this toolkit.
The Angelman Syndrome Clinic held at Kogarah DAS, was also founded at the same time as the ASA, by Dr Robert Leitner and Dr Ellie Smith in 1993, and has been a vital partner in the provision of services for families and carers living with this rare disease. Dr Rani Sachdev and Dr Antonia Milner later joined the Clinic in 2010.
The Co-Design toolkit builds upon the extensive wisdom and experience developed by these teams over some twenty years of experience. Through developing this toolkit we hope to “bring to life” the principles of Co-Design and make them readily understood and available for others to implement, wherever they may be. It provides the tools and resources for anyone who wishes to develop and utilize Co-Design principles in their efforts to develop better health services.
The MRID CodesignKit is one of a family of online toolkits – My MRID Toolkits – being produced as an initiative of the MRID Network. Visit the MRID SchoolKit to learn about how school clinics can be established to support children and young people with complex needs.
Who is Involved?
The MRID CodesignKit has been created by a highly skilled team of professionals who bring a wealth of knowledge and experience to the task.
Dr Robert Leitner – Director, Metro-Regional Intellectual Disability Network
Anne Funke – Carer Representative, Metro-Regional Intellectual Disability Network
Dr Anna Lachowicz – Paediatric Fellow, Metro-Regional Intellectual Disability Network
Dr Alicia Montgomery – Paediatric Fellow, Metro-Regional Intellectual Disability Network
Dr Annemaree Bickerton – Child and Adolescent Psychiatrist, Metro-Regional Intellectual Disability Network
Jayne Wasmuth – Writer
Don Francis of Inky Smudge – IT Specialist
We would also like to thank the following individuals for their contributions:
Lif O’Connor – Clinical Nurse Consultant, Metro-Regional Intellectual Disability Network
Jürgen Wille – Social Worker, Metro-Regional Intellectual Disability Network
Tracey Szanto – Intellectual Disability Network Manager, Agency for Clinical Innovation
Dr Jacqueline Milne – Postdoctoral Research Fellow, Centre for Clinical Governance Research, University of New South Wales
Associate Professor Julie Johnson – Deputy Director, Centre for Clinical Governance Research, University of New South Wales
Karen Burton – Research Assistant, Metro-Regional Intellectual Disability Network
Thanks are extended to families from the New South Wales Branch of the Angelman Syndrome Association who shared their many insights and experiences of Co-Design. Particular thanks to Kevin Kennedy and Mary Bills for their contributions.
More information about the Angelman Syndrome Association, including contact details, is available at their website.
To provide feedback and suggestions, or to ask a question about the MRID CodesignKit, go to our Feedback page. We look forward to hearing from you.