CDDH Victoia

Products and Resources

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:

example of a personal health record

 

Download Personal Health Record - Special Pages

 

Supporting Women - for GP's and Carers

The Centre for Developmental Disability Health has developed two booklets to support women with intellectual disabilities manage their menstruation. One is targeted to medical practitioners and the other to carers.

Supporting Women - for GP's (pdf)

Supporting Women - for Carers (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)

HSDDM frontpage

 

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)

Epilepsy booklet

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/

Pap test: the plain facts

 

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.

Link to pdf

Hospital Care for people with a disability

 

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

Assessment of Sexual Knowledge (ASK)

 

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.


"I can quit" manual.

A fresh start for everyone

 

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

Management Guidelines: Development Disability 2

 

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@monash.edu

Front cover of the book Forever baby

 

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

Download order form (pdf)

(Best to print double sided, back to back, turn on short edge, and stapled in the middle)

Front cover of the HOP book

 

 

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.

Download booklet

Front cover of the Down Syndrome and Alzheimer's Disease Book

For further information about Alzheimer's disease please visit:

Alzheimer's Australia

For further information on Down Syndrome please visit:

Down Syndrome Association Victoria

 

Treat me right!

MENCAP - Understanding learning disability

There is widespread agreement that people with a learning disability have poorer health than the rest of the population. There have been many policy reports and recommendations about how to improve this situation. So why is it that very little has actually changed?

Treat me right! seeks to engage with everyone involved in improving the health and the healthcare experiences of people with a learning disability. It summarises what is known about their health needs and looks at what is actually happening when people seek health service support.

Download booklet
(Best to print double sided, back to back, turn on short edge, and stapled in the middle)

Front cover of the Treat me right! book

 

 

Death by indifference

MENCAP - Understanding learning disability

“We believe that Mark died unnecessarily. Throughout his life, we encountered medical professionals who had no idea how to deal with people with a learning disability or what it is like to be a parent of someone with a learning disability – to know their suffering, to see their distress. If only they would listen...” Allan, father of Mark, who died in August 2003 of bronchopneumonia

Download booklet
(Best to print double sided, back to back, turn on short edge, and stapled in the middle)

Front cover of the Death by indifference book

 

 

Medicare Health Assessments for people with an intellectual disability

Australian Government - Department of Health and Aging

The health assessment provided to people with an intellectual disability may be completed under MBS Items 701 (brief), 703 (standard), 705 (long) or 707 (prolonged) depending on the length of the consultation which will be determined by the complexity of the patient’s presentation.

Download booklet
(Best to print double sided, back to back, turn on short edge, and stapled in the middle)

Front cover of the Medicare Brochure

 

 

Health Guidelines for Adults with intellectual Disabilities

While the epidemiology of dental disease in people with an intellectual disability has not been extensively studied, several studies have indicated high rates of dental disease in this population. An Australian study (Scott et al 1998) noted that various types of dental disease, particularly periodontal disease, oral mucosal pathology, and moderate to severe malocclusion, were up to seven times as frequent compared to the general population. In a population study of adults with an intellectual disability, Beange et al (1995) found that dental disease was the most frequent health problem, occurring in 86% of subjects.

Download booklet
(Best to print double sided, back to back, turn on short edge, and stapled in the middle)

 

Mammography information Sheets

Mammography information sheets for download here

This kit has been prepared by Jacqui Barfoot (OT Student IV – DSQ Mt Gravatt) with the help of BreastScreen Queensland (2004)

 

State Disability Policy for the next ten years - what should it look like?

Proceedings of the Fifth Annual Roundtable on Intellectual Disaiblity Policy

The Roundtable on Intellectual Disability Policy is an annual event convened by the School of Social Work and Social Policy at La Trobe University in collaboration with key stakeholders in disability
policy, practice and program delivery. The Roundtable seeks;

To provide a space for fearless debate, among interested groups, about policy within both the disability and the broader human servicesectors for people with intellectual disabilities,with the intention of naming issues, clarifying concepts and ideas, exploring challenges,articulating solutions and informing practice.

Download booklet
(Best to print double sided, back to back, turn on short edge, and stapled in the middle)

 

 

People with disabilities – a rewarding challenge in general practice

Jane Tracy

The April 2011 edition of Australian Family Physician features two articles on Disability by Dr Jane Tracy

Welcome to an issue of Australian Family Physician that is particularly close to my heart. My son has an intellectual disability, and I understand firsthand the importance and challenges of maintaining optimal health in this group of patients.

Australians with Down syndrome – health matters

Jane Tracy

The health and life expectancy of Australians with Down syndrome has improved dramatically over recent decades, resulting in more people living into adulthood and accessing community and hospital based health and social services.

Link to articles in Australian Family Physician

 

 

Fact Sheets

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)

Angelman Syndrome (pdf, 51KB)

Autism Spectrum Disorders (pdf, 65KB)

Cerebral Palsy (pdf, 54KB)

Challenging Behaviour (pdf, 70KB)

Down Syndrome (pdf, 72KB)

Epilepsy (pdf, 69KB)

Fragile X Syndrome 1 (pdf, 71KB)

Fragile X Syndrome 2 (pdf, 86KB)

Health Promotion (pdf, 53KB)

Intellectual Disability (168KB)

Noonan Syndrome (pdf, 55KB)

Prader Willi Syndrome (pdf, 53KB)

Rett Syndrome (pdf, 53KB)

Services and Resources (pdf, 168KB)

Sexuality (pdf, 51KB)

Tuberous Sclerosis (pdf, 53KB)

Working with people with intellectual disabilities in health care (pdf, 56KB)