Department of Developmental Disability Neuropsychiatry (3DN)

Embracing Life and Ageing Well Forum Report

Media contact:
Anjali Bhardwaj
02 9931 9155

On Tuesday October 30th 2012, the Department of Developmental Disability Neuropsychiatry, held a free forum for people with an intellectual disability, their carers and family members at the South Sydney Juniors Club, Kingsford.

Titled “Embracing Life and Ageing Well” the main focus of the forum was to increase awareness on the importance of looking after the physical and mental health needs of people with an intellectual disability as they age, and ways to achieve this.  Speakers also highlighted practical support available for carers and people with an intellectual disability and where to go to seek this. The guest speakers at the forum included;


The forum provided an excellent opportunity for attendees to hear personal experiences, advice from leading experts and the chance to mingle with members of the department, speakers and other families and individuals over a buffet dinner. Information stalls were set up by IDEAS (Information of Disability & Education Awareness services), Mental Health Association, ADHC (Ageing, Disability and Home Care), NSW CID, Care Connect and Carers NSW.

Over 60 people attended the forum which was advertised via email and post to Sydney based ageing and disability agencies. Feedback in general was very positive:

95% indicated “the talks were helpful”
100% “could understand the talks”
95% of people stated that “they could ask a question if they wanted to”
77% “found the paper handouts helpful”
81% of people “found the displays helpful”

During the forum some very good questions were asked by the attendees. Valuable points made by the panellists and audience members have been summarised below:


"It’s very important to take care of our health and it is a responsibility we all have, especially as we get older."

"There is a lot of work and research being done in this area and I feel like there can be a better life for people with intellectual disability and their carers."

"For someone with an intellectual disability communicating how they are feeling physically, such as whether they are in any pain, can be challenging.  How difficult this is will be depends on the individual communication skills of the person with intellectual disability. A carer or health professional can try and judge the severity of their pain based on what alleviates the pain and by trialling different treatments. If this is unsuccessful you can seek help from a pain management physician."

"Access to professionals that are able to identify mental health issues and make diagnoses in people with intellectual disability is difficult because there is a shortage of people who have these skills. For example, general practitioners find it hard to know what their role is, especially if it is the first time they are treating a patient with an intellectual disability. There are short and long term ways to tackle this problem. In the short term the panellists advise that carers can help by providing as much information as possible to the general practitioner as well as noting that it is best if the person who accompanies the person with intellectual disability to the doctor is someone who knows him/her very well. Additionally by planning ahead and booking a longer appointment or several short ones the doctor will have more time to thoroughly assess their patient. In the longer term NSW health is working to improve the knowledge and skills in this area through education for general practitioners. At present, ongoing training programs are underway for health professionals and services, including psychiatrists, rehabilitation medicine, mental health services and drug and alcohol services."

"One of the primary recommendations of the National Mental Health Commission for 2012/2013 is to protect the rights of people with intellectual disability by moving toward a person centred view of care and treatment in the mental health system. For more information about this see the National Disability Scheme website."

"There is research on the criminal justice system which shows that people with cognitive disabilities are overrepresented. People tend to come back repeatedly unless they get the support that they need. Appropriate support is required on a case-by-case basis that assists the individual to break the cycle."

"The panellists spoke of the struggle for a support model for people with intellectual disability as they age. It is still unknown whether the best practice is through mainstream ageing services who might not have the expertise that relate to the disability or having disability specific supports for people as they age. It is clear that more work needs to be done on clarifying the support model. Further comments on this can be found on the NDIS website."

"Cultural support for people with intellectual disability and dementia is difficult because there are a very small amount of people who fall under each cultural category. It’s a matter of finding out what works for a person at an individual level and whether that person can be connected to culturally specific facilities. Further information can be found on the St George migrant service centre for ageing and disability."

"There needs to be an audit of all intellectual disability health content in the Australia and New Zealand medical school’s curricula and to develop some content suggestions regarding training and educating students in the area. The first step is to demonstrate the lack of uniformity across institutions and then to propose minimum standards and packages that would be easily adaptable to the different curricula across the country. Currently there is some provisional support for this process from the Council of Medical Deans of Australia but there is a long way to go."

"One of the things being done as part of the National Mental Health Commission is social research on how difficult it is to talk about any form of difference in a family whether it is a mental health challenge or the complication of a family member with an intellectual disability, care arrangements or potential longer term ageing issues including mental health. A lot of the times these families feel alone that they are dealing with a particular set of circumstances that nobody really understands. There is a lot of this around and these are the issues that communities will face as the population ages and we need community support."

"While the focus of this forum was on intellectual disabilities many of the things covered are relevant to people with physical disabilities as well. For example, the information provided regarding dementia and looking after ourselves to prevent dementia is equally relevant to people with and without intellectual disabilities and also apply to people with physical disabilities."

"There is a high turnover rate in the intellectual disability workforce and this brings about concerns about residential staff not being able to fully understand their clients and not having proper training. The environment is very difficult so it is a challenge to provide good education and support for the people working in that situation. The department of disability neuropsychiatry is trying to create internet based training for people with intellectual disability and mental health problems, some of which covers the area of challenging behaviour. The department hopes to have an online training system available sometime in 2013."

Date Published
Thursday, February 21, 2013

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