Products and Resources
- Personal Health Records for people with Developmental Disability
- Download Personal Health Record – Special Pages
- Menstrual Management books
- Healthcare Scenarios in Developmental Disability Medicine
- Epilepsy booklet
- PapScreen booklet
- Hospital Care for people with a Disability
- Assessment of Sexual Knowledge Tool (ASK Tool)
- Smoking Education program
- Management Guidelines: Developmental Disability
- Forever Baby
- Fact Sheets
- Depression in Adults with Intellectual Disability – Checklist for Carers
- Health and Disability: Partnerships in Action – Teaching and Learning package (pdf, 87KB)
- HOP: Hanging Out Program: Interaction for people at risk of isolation
- Down Syndrome and Alzheimer's Disease information booklet (pdf, 5.7MB)
Personal Health Records for people with Developmental Disability
A Personal Health Record (PHR) can be an effective tool in facilitating health management for people who have chronic or complex health problems, particularly if they are likely to be moved from place to place, with only scanty file records going with them. People who have an intellectual disability, with or without communication problems, are especially vulnerable to inadequate health care, as they are unlikely to carry key health information in their heads or to be able to convey it effectively to a new doctor. The PHR provides a comprehensive health record that is owned and held by the patients themselves. It 'grows' with the person, as new information is added and old information is retained as past history.
Download Personal Health Record:
Download Personal Health Record - Special Pages
- Angelman syndrome sheet
- Autism information sheet
- Behaviour management chart
- Cerebral palsy information sheet
- Challenging behaviour information sheet
- Down syndrome information sheet
- Epilepsy Chart
- Epilepsy information chart
- Fragile X syndrome information sheet
- Menstruation chart
- Noonan syndrome information sheet
- Prader Willi information sheet
- Rett syndrome information sheet
- Tuberous Sclerosis information sheet
- Weight chart
- Williams syndrome information sheet
Menstrual Management books
The Centre has produced two booklets to support women with disabilities manage their menstruation. One is targeted to medical practitioners and the other to support workers.
Menstrual Management Guide GP (pdf)
Menstrual Management Guide Staff (pdf)
Healthcare Scenarios in Developmental Disability Medicine
This interactive DVD introduces users to Jacqui, Colin, Sara and Geoff. Through video scenarios you will learn about their lives and how their developmental disability affects them. A medical consultation with each person highlights particular issues in the healthcare of people with developmental disabilities. An accompanying knowledge base, extensively illustrated with images and personal stories, provides an overview of developmental disabilities, explores general issues in healthcare, communication strategies, mental health and illness in people with intellectual disabilities and the experiences of families and carers.
Download Brochure (pdf, 379KB)
Download order form (pdf, 530KB)
Epilepsy booklet
This booklet was produced by CDDHV staff for people who have an intellectual disability and epilepsy to help them understand and manage their epilepsy.
Download Epilepsy Booklet (pdf, 6.47MB)
PapScreen booklet
This resource was produced by CDDHV staff in partnership with PapScreen Victoria for women with intellectual disability to assist them to understand the need for and process involved in Pap testing.
Download PapScreen booklet (pdf, 3.4MB)
see also this link: http://www.papscreen.org.au/
Hospital Care for people with a Disability
The Centre for Developmental Disability Health worked with Moira Disability and Youth Services to produce A Quick Reference Guide to Hospital Care of People with a Disability. People with a disability and their families, carers and health professionals face may particular challenges when the person with a disability is hospitalised. The Quick Reference Guide is a booklet designed to highlight some of the issues around planning for an admission, the admission itself and discharge from hospital. The booklet is available from the Centre for Developmental Disability Health Victoria for a small charge to cover postage and handling – or online through the link below.
Assessment of Sexual Knowledge Tool (ASK Tool)
The Assessment of Sexual Knowledge (ASK) is a new test that aims to provide workers within disability services and other health professionals with a tool to assess the sexual knowledge and attitudes of people with an intellectual disability.Link to further information and ASK order form
Smoking Education program
Staff at the CDDHV have developed a smoking cessation and smoking education course for people with an intellectual disability. This program is based on Quit Victoria's Fresh Start course.
Management Guidelines: Developmental Disability
CDDHV staff were delighted to see the new Therapeutic Guidelines publication "Management Guidelines: Developmental Disability Version 2" which was released in June 2005.
The book is an affordable reference on Developmental Disability Medicine for health professionals. Therapeutic Guidelines produce a range of practical handbooks for doctors, and the decision to broaden the concept to Management Guidelines was welcomed. In 1999 the first edition of Management Guidelines: Developmental and Intellectual Disabilities was released, providing detailed guidance on 'whole of life care' for people with developmental disability. Chapters were written by Australian leaders in the field of Developmental Disability Medicine and many of the authors were staff from the CDDHV.
The 2005 edition, entitled Management Guidelines: Developmental Disability. Version 2, 2005 includes new chapters, as well as updates of previously included work. Web based resources are a valuable edition to this new version. Once again the CDDHV staff have made a substantial contribution to the book and are delighted to be able to recommend the publication to undergraduate and postgraduate medical students, and students from other health disciplines, studying Developmental Disability Medicine.
http://www.tg.com.au/?sectionid=93
Forever Baby
A moving account of a mother's experience of having a daughter with a disability, and of the daughter's tragic death and the impact on those who loved her.
For further information and to order a copy of 'Forever Baby' please email: mary.burbidge@med.monash.edu.au
HOP: Hanging Out Program: Interaction for people at risk of isolation
Forster, Sheridan (2008)
Sometimes adults with severe-profound intellectual disabilities end up on the edge of interactions. Their unique needs in interactions mean that sometimes they miss out on the company that they need. HOP, or the Hanging Out Program, is a simple approach for making sure people don’t miss out. It is both an approach and an attitude for being with people. HOP is easy to use and implement. Opportunity for reflection is built into HOP, alongside a way of documenting what has been learnt.
HOP was developed by Sheridan Forster while working at Yooralla First Base, in St Albans, Victoria. Sheridan is a Speech Pathologist and researcher interested in interactions between disability support workers and adults with profound intellectual and multiple disabilities. She is currently working on her PhD at the CDDHV.
Download booklet
(Best to print double sided, back to back, turn on short edge, and stapled in the middle)
About Alzheimer's disease and Down syndrome
Down syndrome is the most common cause of intellectual disability and occurs across all races and cultures. Down syndrome is associated with a wide range of health issues. This booklet will help you understand the relationship between Down syndrome and Alzheimer’s disease.
Alzheimer’s disease is the most common form of dementia in the general population. It is also the most common form of dementia in people with
Down syndrome. The difference for people with Down syndrome is that it occurs more frequently and at a younger age than in the general population.
For further information about Alzheimer's disease please visit:
For further information on Down Syndrome please visit:
Down Syndrome Association Victoria
The CDDHV have developed a number of Fact Sheets on topics and issues related to developmental Disability Medicine.
Accessing mental health services for people with an intellectual disability (pdf 225 KB)
Autism Spectrum Disorders (pdf, 65KB)
Challenging Behaviour (pdf, 70KB)
Fragile X Syndrome 1 (pdf, 71KB)
Fragile X Syndrome 2 (pdf, 86KB)
Prader Willi Syndrome (pdf, 53KB)
Tuberous Sclerosis (pdf, 53KB)
Working with people with intellectual disabilities in health care (pdf, 56KB)
