NSW CID Health Advocacy

  People with intellectual disability face "stark health inequalities" 
(National Health and Hospitals Reform Commission, final report, 2009)

We work in close partnership with the Australian Association of Developmental Disability Medicine (AADDM).

See our November 2011 update 'Some Steps Up the Hill' which spells out our  advocacy and  progress on  health issues over the last year.

And see below for more information on the following topics:

CID and AADDM position statement on health
New intellectual disability health services in NSW
Intellectual disability and the Agency for Clinical Innovation
Alcohol and other drug services  
Commonwealth government health reforms
Mental health
Personally controlled electronic health records
Medicare Locals
Annual health assessments
Health fact sheets
NSW CID health forums

CID and AADDM position statement on health

Our Position statement on the health of people with intellectual disability calls for two things:

1.  All health care planning to include specific consideration of how it will meet the needs of people with intellectual disability.
2. A national network of health services specialising in the health care of people with intellectual disability.   These services would be a consultancy and training resource to the mainstream health system.

The position statement includes a long list of endorsements by eminent individuals and national, regional and local groups from around Australia.  

For more information on the need for specialised health services, see our paper The case for specialised intellectual disability health services.

New intellectual disability health services in NSW

The NSW Government has funded 3 new intellectual disability health services.  In 2010, the Labor Government funded a new service for the Illawarra/Shoalhaven.

The Coalition Government and Health Minister, Jillian Skinner, have now funded 2 new services.  These new services will be in south west Sydney and northern Sydney.  

Contact details for the new services will be in our fact sheet Specialised intellectual disability health services.

Intellectual disability and the Agency for Clinical Innovation

The Agency for Clinical Innovation (ACI) advises the NSW Government on how to improve
health care.  

The ACI is now looking at how to improve health care of people with intellectual disability.  It has set up an Intellectual Disability Network to do this.   The people on this are health professionals, consumer representatives and disability service providers.  NSW CID has found some advocates and parents to be on the network.

Alcohol and other drug services  

People with intellectual disability find it hard to get help when they have drug problems.  Drug services often say that people with intellectual disability are not suited to their programs.  We have been working with the Mental Health and Drug and Alcohol Office in NSW Health to start to address this problem.

For more information, see our Alcohol and other drugs fact sheet  and a  presentation given by our board member Judy Harper in March 2011.

Commonwealth government health reforms

In 2010, the Commonwealth government announced a package of health reforms. These reforms said nothing specific about the health of people with intellectual disability. We wrote a paper
 The commonwealth health reform agenda – making it work for people with intellectual disability.  The Department of Health and Ageing in Canberra has been listening to us on what needs to happen for health reforms to work for people with intellectual disability and some positive things are happening.

You can find the latest information on the Commonwealth government reforms at the Your health reforms website.

Mental health

People with intellectual disability have high rates of mental disorders but find it hard to get the right help with their mental health.
In early 2011, we wrote a position paper 'The place of people with intellectual disability in mental health reform' which includes endorsements from leaders in mental health – individuals and groups.  Our paper was launched by Maria Tomasic, President of the Royal Australian & New Zealand College of Psychiatrists.  See the College’s media release here.

In August 2011, we made a submission to the Senate inquiry into mental health services.

NSW CID in Parliament

The Community Affairs References Committee report into mental health in Australia failed to mention disability at all even though it was a specific Term of Reference. NSW CID brought this to the attention of some Federal Politicians and Senator Sue Boyce raised this issue in Parliament.

Senator Boyce reported that “ It is a shame that we have not been able to work to assist people. And yet, when we look at the figures, there are about 408,000 Australians who have an intellectual disability, and they are estimated to have mental disorders at 2½ times the rate of the general population.”

Click here to read the full transcript (you will need to scroll to the bottom of the first page).

Personally controlled electronic health records

From July 2012, people around Australia will be able to register to have an electronic health record that they can make available to health professionals who are treating them. This reform should be very valuable for people with intellectual disability who often have trouble giving a history to a health professional.  CID is advocating for people with intellectual disability to be a priority group in the rollout of electronic health records.

However, it is important that the system take account of what "personally controlled" means for people with intellectual disability. The system should aim for people with intellectual disability to have accessible information and support so that they can make their own decisions about their health records. However, there also needs to be a system of substitute consent for people who are unable to understand decisions about their health records.

For more information, see our submission on the PCEHR legislation issues paper.

Medicare Locals

The Commonwealth Government is setting up Medicare Locals in every part of Australia.  Their job is to improve primary health care.  Medicare Locals have to work out what groups are missing out on good health and try to fix these problems.  We say they should focus on better health care for people with intellectual disability.

The Department of Health and Ageing has funded NSW CID to write some fact sheets for Medicare Locals and local disability groups so they can work together to improve the health of people with intellectual disability.
We will put the fact sheets on our website.

Annual health assessments

In 2007, we succeeded in our long campaign for people with intellectual disability to have Medicare funded annual health assessments. These assessments are a very important way to find health problems that otherwise are unknown.

See our Annual health assessments fact sheet.

Health fact sheets

NSW CID has produced two sets of health fact sheets:

• Standard fact sheets for families, advocates, disability workers and other professionals
• Easy fact sheets for people with intellectual disability

NSW CID health forums

Healthier Lives in the New England Region Thursday 15 March 2012

NSW CID is going to Armidale on Thursday 15 March to hold another of our highly regarded forums on strategies to improve the health of people with intellectual disability in the New England region.