Fwd: Commonwealth action on on the health of people with intellectual disability

This information comes from Mr Jim Simpson from NSW Council for Intellectual Disability

Patrick McGee ADJC Coordinator 0448 610 105


Dear all,

We had constructive meetings last week with Health Minister Sussan Ley, Shadow Mental Health Minister Katy Gallagher and Greens disability spokesperson Rachel Siewert. Our below email to Minister Ley reports on progress with her and the election commitments we are now seeking from the political parties.

Thanks to the many of you who have supported our advocacy here. Please also consider including the commitments we seek below in any pre election lobbying you are doing.


Jim Simpson

Senior Advocate

NSW Council for Intellectual Disability

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From: Jim Simpson [mailto:jcsimpson@optusnet.com.au] Sent: Tuesday, 26 April 2016 5:21 PM To: 'Minister.Ley@health.gov.au' Minister.Ley@health.gov.au Subject: Election commitment on the health of people with intellectual disability

Dear Minister,

Thank-you for meeting with us last week. We valued the discussion and your statements:

· That you expect the Health Care Homes initiative to assist people with intellectual disability. James McAdam has now linked us with Janet Quigley in the Department.

· That you are happy to press Primary Health Networks to be inclusive of the needs of people with ID. We applaud that your office has already ensured that the Department will provide guidelines to PHNs on intellectual disability mental health and look forward to being consulted on these. We noted to you that a circular to PHNs on the health of people with ID could be another valuable way to inform them on this issue.

We appreciate your receptiveness to act in these ways but also emphasise that a clear overall commitment is needed if we are to avoid the recurring pattern of health reforms not including people with ID.

We confirm that we seek an election commitment to the 400,000 Australians with intellectual disability. With their immediate families, this is 1.5 million voters.

Flowing from

· *the very poor health status experienced by people with ID, *

· *the common exclusion of this group from health initiatives, and *

· *our recent need to conduct a concerted campaign to get this group recognised in the Government’s current mental health reforms, *

we seek the following commitments from each political party.

These commitments would not require any budget enhancement. They are about equitable inclusion of people with ID in major health initiatives

CID calls for these commitments from the Government:

1. Core commitment - All major Commonwealth physical and mental health initiatives will include specific consideration of what needs to happen to make them work for people with intellectual disability. This includes current Commonwealth initiatives on mental health and chronic illness.

2. Current Commonwealth mental health initiatives - we seek:

· An accountable requirement that Primary Health Networks include specific attention to people with ID in their rollout of reform.

· Collection of data on the inclusion of people with ID in the reforms.

· Provision of guidelines to PHNs and the services they commission about how to meet the mental health needs of people with ID.

· ID peak advocacy and health professional groups being regularly consulted through the implementation process of the reforms.

3. The physical health of people with ID must also be prioritised with similar requirements and guidelines provided to PHNs in relation to physical health.

4. Post election, ongoing dialogue with you about action on issues including MyHealth records, collaboration between health services & the NDIA, & expansion of specialised ID health services.

The problem

Compared with the general population and despite high medical consultation rates, people with ID have:

  • 2.5 times the number of health problems including 30% having mental disorders.
  • Low rates of accurate diagnosis and appropriate treatment – only 29% in a landmark study.
  • Low rates of management of risk factors for chronic health conditions.
  • Early death – Dying at least 5-20 years early.
  • Double the rate of preventable deaths.
  • Twice the rate of emergency department presentations.
  • Twice the rate of hospital admissions with each admission costing twice as much.

See attached research summaries and Bittles 2002.

*Peter has a mild intellectual disability and lives independently with drop in support. He was referred to the local mental health service by his outreach worker after he stopped attending work and was found in a self-neglected state, refusing to get out of bed. The diagnosis given by the mental health service was ‘behavioural’. *

Peter was deeply depressed.

*When Danielle was 37, she complained of pain in her pelvis and said that she could not walk. The doctor in casualty said she was just playing up as part of her disability. When she did not improve, her father took her to her GP and then back to hospital and insisted on an x-ray. She had two fractures in her pelvis. After time in hospital, Danielle had two months of bed rest and needed full care from her elderly father. *

*Much later, Danielle saw a doctor experienced in intellectual disability. The doctor knew that Danielle’s anti-epileptic medication increased her risk of osteoporosis. A bone density scan confirmed that she had severe osteoporosis which caused the fractures. Danielle now receives regular drug infusions to treat the osteoporosis.*

Key milestones towards addressing the problem

  • Annual health assessment items in Medicare 2006
  • NSW ID Health Roundtable 2007 – followed by NSW Health Framework, 3 pilot ID health teams to back up mainstream services, Chair in ID Mental Health at UNSW and specific provision in NSW Mental Health Plan.
  • CID/AADDM position statement 2009 signed by 360 leaders in health, disability and the community (attached) - Calls for *specific *inclusion of people with ID in health initiatives.
  • National Health and Hospitals Reform Commission 2009 – People with ID “suffer stark health inequalities”.
  • National Disability Strategy COAG 2010 – 2020 - Calls for specific inclusion of people with disability in health initiatives.
  • Our Medicare Locals fact sheets 2012 (example attached) – Subsequent audit on action showed very low inclusion of people with ID in Medicare Local governance and consultation, needs assessment and programs.
  • National ID Mental Health Roundtable 2013 – Communique (attached) calls for specific inclusion of people with ID in mental health initiatives.

*A key theme through these milestones is the need for specific inclusion of people with ID in health initiatives*. Without specific inclusion, the history of exclusion and stark health inequalities will continue.

Although we are a NSW based organisation, for many years, we have been taking the lead on national health advocacy for and with people with ID. We do this in collaboration with a wide range of ID advocacy, health and service provider groups from around Australia.

Minister, you have committed to some useful steps in response to our advocacy on mental health and chronic care. However, we need the above commitments so that in future we can go to health bureaucrats, PHNs and others on the basis of a clear Governmental commitment to equitable inclusion of people with ID in heath reforms.

Our ask above is deliberately budget neutral in view of the current financial climate. However, if you were open to specific funding commitments, we would of course welcome these. Two fairly modest but very valuable commitments would be:

· Funding for a clinical nurse consultant to act as a specialist ID resource in each of the 31 PHNs.

· Funding a national centre of excellence in the health of people with intellectual disability - $3m a year.

We seek the Government’s position on these issues as soon as possible so that we can report it to our constituency.

Could you please advise when we can expect to hear back from you?


Jim Simpson

Senior Advocate

NSW Council for Intellectual Disability

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