Dear colleagues and friends,
We ask you to take a few minutes to read this and then email Health Minister Sussan Ley calling on her to include people with intellectual disability in the rollout of the Australian Government mental health reforms.
What are the reforms?
Late last year, we welcomed the Government's mental health reform plan. The plan includes:
1. Handing over funding to primary health networks around Australia so that they can use the funds to address local needs and gaps in services with a specific responsibility for underserviced populations.
2. Joined up support for mental health of children including working with schools.
3. Further development of youth mental health services.
4. Improving services and coordination of support for people with severe and complex mental health problems.
The plan emphasises person centred support, early intervention, a focus on vulnerable groups and community participation in rollout of reform.
These reforms looked promising for people with intellectual disability who have well-established high rates of mental health problems but poor access to mental health care. Clearly, the focus on vulnerable groups and gaps in services should include them.
Rollout of the reforms is not including people with intellectual disability.
Rollout of the reforms needs to specifically include people with intellectual disability. The National Disability Strategy which has been approved by all Australian governments calls for this.
What we know from history and our audit of action by Medicare Locals (the predecessors of Primary Health Networks) is that unless there are specific requirements for health services to include people with intellectual disability in reform, then this is unlikely to happen. People with intellectual disability will again be left on the sideline of reform.
We have discussed these issues with the Australian Department of Health and are left with no encouragement that people with intellectual disability will be included in the Department’s requirements and guidelines for Primary Health Networks.
We have written to Minister Ley seeking her intervention and attach a copy of that letter.
What we ask you to do
Please email Minister.Ley@health.gov.au and urge her to ensure that people with intellectual disability receive their fair share of the Government's reforms. Specifically, we seek:
1. A requirement that Primary Health Networks include specific attention to people with intellectual disability in their rollout of reform. In the first instance this includes needs assessments and the rollout of trial sites.
2. Processes for collection of data on the inclusion of people with intellectual disability in the reforms
3. Provision of guidelines to PHNs and the services they fund about how to meet the mental health needs of people with intellectual disability.
4. That representatives of the intellectual disability community and professional bodies are regularly consulted through the implementation process of the Governments reforms.
If you have time, please personalise your email by including something about your experience of the problems people with intellectual disability face in getting mental health care.
Could you please also send me copies of emails you send.
Regards and thanks,
NSW Council for Intellectual Disability
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Level 2, 418A Elizabeth Street
Surry Hills NSW 2010
Phone: 02 9211 1611 Fax: 02 9211 2606
We write to seek your intervention on the lack of a process to include people with intellectual disability in the implementation of the Government's current mental health reforms. This failure is squarely contrary to both the COAG National Disability Strategy and the outcomes of the National Roundtable on the Mental Health of People with Intellectual Disability that we convened in 2013 with strong support and input from the then Department of Health and Ageing.
We look forward to meeting with you on 20 April but the issues we raise here are urgent in view of decisions currently being made on the rollout of the Government’s mental health reforms.
Who we are
For 60 years, we have been the peak advocacy group for people with intellectual disability and their families in NSW. On health issues, we take a national role in collaboration with our sibling organisations Inclusion Australia and intellectual disability health professional groups.
Approximately 500,000 people in Australia have intellectual disability and approximately 30% of those people have mental disorders. Despite this high prevalence, the research evidence on the mental health of people with intellectual disability shows poor access to mental health care, frequent errors in diagnosis, health professionals perceiving themselves to be inadequately trained and psychiatrist perceiving people is receiving a poor standard of mental health care. (For detailed background on the problem including research evidence, see the Background Paper for the National Roundtable at www.nswcid.org.au/what-we-do/mental-health.html )
National policy expectations for action
The COAG National Disability Strategy 2010-2020 responds to the poor health and healthcare experienced by people with disability. Policy direction 3 in the health section of the strategy specifically says:
Universal health reforms and initiatives [should] address the needs of people with disability, their families and carers. System changes flowing from health reforms and initiatives across Australia provide important opportunities to improve responses to the health needs of people with disability….Key health reforms with implications for people with disability include…. mental health.
Area for future action 6.6 says:
Address issues specific to people with disability as part of the national expansion of key public health strategies such as….mental health…, so that they explicitly meet the needs of people with disability.
The National Roundtable on the Mental Health of People with Intellectual Disability brought together key players from around Australia including the senior mental health bureaucrat and/or chief psychiatrist from each Australian Government as well as presidents of medical colleges, the chief executive of Mental Health Australia and the Chair and Chief Executive of the National Mental Health Commission. The Roundtable adopted eight key elements of effective action the first of which was:
The needs of people with intellectual disability and a mental disorder are specifically accommodated in all mental health initiatives.
See accompanying Roundtable Communique.
Implementation of the Government’s reforms does not include people with intellectual disability
We welcomed the Government's response to Contributing Lives and saw the range of immediate action committed to in it is as having potential to improve the mental health of people with intellectual disability alongside other people with mental disorders.
We particularly welcomed emphasis in the Government’s response on the need for implementation of reform to specifically accommodate vulnerable groups and target underserviced populations. Clearly, people with intellectual disability is one of these groups.
However, we have now had two meetings with Anthony Millgate, Assistant Secretary, Mental Health Services Branch. We have appreciated Mr Millgate's availability and frankness but have been extremely disappointed by the lack of any apparent process to ensure that people with intellectual disability will be part of the immediate actions that the Government has promised.
From the discussions that we have had with Mr Millgate, areas where we see it as vital that people with intellectual disability are squarely accommodated include
· The needs assessment processes to be carried out by Primary Health Networks.
· Other guidelines and guidance documents being prepared for PHNs.
· Data collection and key performance indicators.
· Trial sites that are currently being established in relation to particular initiatives.
The history of poor access to mental health care for people with intellectual disability tells us that they are unlikely to be included in current initiatives unless their inclusion is mandated by the Government and supported by appropriate guidelines for PHNs.
Our experience with Medicare Locals reinforces this history. Medicare Locals had a mandate to identify groups who were missing out on health services and coordinate services to address these gaps. With funding from DOHA, we produced and distributed fact sheets for Medicare Locals and local disability groups to assist them to work together. These fact sheets identified the well-established physical and mental health disparities faced by people with intellectual disability and suggested practical strategies that Medicare Locals could take to include people with intellectual disability in their consultative and planning processes and in their programs. (The fact sheet for Medicare Local accompanies this letter.)
In 2014, we conducted an audit of action by Medicare Locals on the health of people with intellectual disability. Of the 61 Medicare Locals, 21 responded to this audit and it would be reasonable to postulate that those who responded were more likely to have something positive to report than those who did not. Of the 21 who responded,
· Only 4 responded yes that they included intellectual disability groups in their governance and consultation systems.
· Only 8 responded yes that they had identified needs of people with intellectual disability in their needs assessment and planning.
· Only 7 responded yes that they were ensuring that new programs included a focus on people with intellectual disability.
Action that we seek from you now
We will appreciate that the mental health needs of people with intellectual disability, whilst stark, need to be viewed within the context of poor access to mental health services for a range of population groups. In the context of the current reforms, all we seek is that people with intellectual disability receive a fair share of the positive action that those reforms promise. Action on the mental health of people with intellectual disability could readily be integrated into each of the immediate action areas committed to by the Government.
To establish a platform for people with intellectual disability to receive their fair share of current reform, what we seek now is:
1. An accountable requirement that Primary Health Networks include specific attention to people with intellectual disability in their rollout of reform. In the first instance this includes needs assessments and the rollout of trial sites. This requirement could be built into the guidelines currently being prepared by DOH and contracts with PHNs.
2. Processes be established for collection of data in relation to the inclusion of people with intellectual disability in the reforms. (This could be done in consultation with Julian Trollor, Professor of Intellectual Disability Mental Health at UNSW. Professor Trollor is currently carrying out a major NHMRC data linkage study in relation to the mental health of people with intellectual disability.)
3. Provision of guidelines to PHNs and the services they commission about how to meet the mental health needs of people with intellectual disability. A springboard from which guidelines could be prepared is The Guide, Accessible Mental Health Services for People with Intellectual Disability produced by Professor Trollor in 2014 with funding from DOHA. 3dn.unsw.edu.au/
4. That we are regularly consulted through the implementation process of the Governments reforms. With our health professional colleagues, we are able to provide practical input on the mental health care needs of people with intellectual disability and how those needs could be better met through the Government’s current reforms. For example, we should be able to direct trial sites to useful local intellectual disability experts.
Minister, we applaud your leadership on mental health reform. We now seek you intervention so that people with intellectual disabilitydo not miss out on a share of the benefit of that reform.
We look forward to your reply.
NSW Council for Intellectual Disability