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United Nations Convention on the Rights of Persons with Disabilities

An Australian Multiple Sclerosis Perspective

 

 
Protecting the Vulnerable News Headlines Patient-Centred Guidelines MS Care Standards
   January 2017 update
Full and Effective Participation
The purpose of this Convention, to which Australia is a signatory (ratified in 2008), is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
  National Disability Strategy Consultation Report
  Published in 2009 by the National People with Disabilities and Carer Council under the title "SHUT OUT: The Experience of People with Disabilities and their Families in Australia"  this report provides a foundation for developing Australian Government policies consistent with its obligations under the foregoing Convention. Click here to Access this Report
  Productivity Commission Report
  Disability Care and Support - Inquiry report - This inquiry report was released on 10 August 2011.  Click here for details including  the key points and an extensive summary of the Commission's analysis and recommendations
  Patient-Centred Care
  In September 2011 all Australian Health Ministers endorsed ten National Safety and Quality Health Service Standards and the tasks required to fulfil them designed to assist health service organisations to deliver safe and high quality care. In 2012 the Australian Commission on Safety and Quality in Health Care released further guidelines in a report titled "Patient Centred Care - Improving Quality and Safety through partnerships with Patients and Consumers" - more about patient-centred care.
  The Australian National Disability Insurance Agency
 

The Australian National Disability Insurance Agency’s (NDIA) 2014 Draft Strategic Plan identifies its three goals as:

1 People with disability are in control and have choices, based on the United Nations Convention on the Rights of Persons with Disabilities
2 The Scheme is financially sustainable and is governed using insurance principles, and
3 The Community has ownership, confidence and pride in the Scheme and the Agency


Translating National Agendas to Individual Rights
One of the key drivers of the foregoing "'consumer directed" initiatives is the replacement of government block funding (to support agencies) with direct funding to individuals eligible for NDIS support - by way of personalised care plans. They in turn may contract directly for services specific to their needs. Multiple Sclerosis is an eligible chronic illness. Similar consumer directed principles apply to research funding,- more about this transition.
Multiple Sclerosis Implications
This shift in funding emphasis is accelerating structural change within the MS Australia Network whereby the long standing benevolent role of State based MS Societies is progressively giving way to centralised corporate models that increasingly include offering 'user pays' disability services. For example the eastern State MS Societies of NSW, Victoria, ACT and Tasmania no longer exist. Progressively since 2006 the controlling entity became Multiple Sclerosis Ltd - which is also the owner of Australian Homecare Services.  MS Ltd is also significantly represented on the Boards of the national bodies MS Australia and MS Research Australia. Families living with MS do not have an acknowledged controlling interest in decisions taken by any of these entities.
 A Perceived lack of MS Community Ownership in Decision Making
The consequences of this ''lack of MS community ownership'' is reflected by the ongoing failure of these heavily inter-related entities to properly acknowledge and effectively respond to petitions from more than 2,000 Australian families living with MS concerning the impact of cardiovascular irregularities on MS progression.
United Nations Convention
The 50 Articles of the UN convention have significant ramifications in relation to Multiple Sclerosis. They highlight the need for an holistic Australian, nationally endorsed process that establishes as a matter of right, access to critical support (especially medical)  pathways as and when needed. Unlike the UK such a process does not exist in Australia. In consequence, enormous additional pressure is placed on people with MS, their families and all of those entrusted with their care. This need is accentuated by the knowledge that the majority of those diagnosed with MS also have the recently discovered vascular condition known as Chronic Cerebrospinal Venous Insufficiency (CCSVI).
NDIS Implications
The absence of such a fundamental baseline compromises the true potential of NDIS. It stands to reason that if there are major shortfalls in the medical management of MS then the ''flow over" call on NDIS (to attempt to compensate) will be higher and less effective. This issue was also taken up with Patrick Maher, Chief Operating Officer, National Disability Services in September 2013 without response.
Multiple Sclerosis Australia
For more than 15 years MS Australia has been conscious of this underlying problem. To the extent that MSA identifies itself as "The National voice for people with MS" in 2014 (and prompted also by related developments in the UK) it's support was sought for a patient-centred approach to addressing this issue.
On 10 October 2014, Debra Cerasa, CEO MS Australia said "A plan for this work has been on the MSA agenda for some time. MSA, in conjunction with the State MS Societies National Services Leadership Group (NSLG), is currently considering how we can facilitate an appropriate review of the NICE guidelines that will be beneficial across all stakeholders, given that we have no allocated resources for such a development".
Debra continued "I also recognise that the MS Nurses Association, the Australian Neurologists with special interest in MS,  MS clinics in hospitals and other groups also have a keen interest in this discussion".  More about involvements by MS Australia.
Ethical Balance - Corporate Interests versus Disability Rights
While nothing substantial has since eventuated we are reminded of the words of the 2013 winner of Australia's National Disability Award for "Excellence in Justice and Rights Protection" Robert Pask, when he said  "The best people to advocate for people with disabilities are those who live with the disability. Organisations need to be able to act in the best interests of people they represent, but also to empower those people to act on their own behalf - something that our not for profit can easily forget in their enthusiasm to pursue corporate interests.

The subsequent recognition of the patient-centred approach adopted by CCSVI Australia whereby Kerri Cassidy was selected as the 2016 winner of this award affirms this principle. Kerri is advocating for better medical access, by people diagnosed with multiple sclerosis, to screening and treatment for a cardiovascular comorbidity known as Chronic Cerebrospinal Venous Insufficiency (CCSVI). A potentially very serious condition experienced by at least 80% of those diagnosed with MS - more about this advocacy.
 
The Awards process also provided opportunities to invite Multiple Sclerosis Australia (MSA) and Multiple Sclerosis Research Australia (MSRA) to clarify the scope of their commitments to patient centred advocacy as demonstrated by Kerri - here and here is what was said.
Guiding Principles
A useful example to assist in matching MS service delivery expectations with outcomes is for services to be delivered in ways that are consistent with the "Guiding Principles for the Provision of Services to people with MS as included in the (2003) publication 'A Charter for MS Services: the voice of people affected by MS. Originally developed by the Multiple Sclerosis Society of Great Britain and Northern Ireland  the Guiding Principles have broad application in all areas of service delivery to people affected by MS. It does however need revision to reflect 2016 understandings.
International Day of People with Disability (IDPwD) 
This is a United Nations sanctioned day that occurs annually on 3 December. The day celebrates and recognises the achievements, contributions and abilities of people with disability.

The day also provides an important opportunity to raise awareness about disability issues more broadly across the community and, ultimately, to support the development of an inclusive Australian society. 

The National Disability Awards - 2007 to 2016

The Awards are held each year leading up to International Day of People with Disability celebrations. The Awards aim to honour and recognise the outstanding achievements of individuals and organisations that have improved the lives of people with disability and thereby contributed to increased recognition of equality and human rights for all Australians. In Australia and with regard to Multiple Sclerosis, there is very real concern that barriers limiting access to vascular (CCSVI) screening/treatment represent a breach of Article 5 to the UN Convention relating Health Care access.

 

The Award categories celebrate and acknowledge people and organisations who demonstrate excellence, passion, vision and a commitment to assisting people with disability to achieve their goals.

2016 Award Winners

The 2016 Awards ceremony was held at Parliament House in Canberra, on 7 November 2016. Find out more about the 2016 Winners

across all award categories
 
The Awards are judged on the following evaluation criteria:
1 Relevance of the nomination to the Award descriptions (the achievement).
2 Demonstrated outcomes, successes and positive impact on Australians with disability that could include demonstrated innovative, quality or leading practice elements that distinguish the approach from others or that could then be replicated by others (the impact).
3 Demonstrated commitment to upholding the United Nations Convention on the Rights of Persons with Disabilities to enable a disability rights-based culture, and commitment to reflecting and reinforcing the community and universal-based approaches underpinning the National Disability Strategy as outlined below (taking a rights-based approach).
 
Superior Leadership in times of change
Benchmarks Nominations from those who go above and beyond are well regarded, as are nominations that reflect a rights-based approach and truly capture the spirit of the Awards and their intent.
  The judging panel particularly looks at nominations that support the community and universal-based approaches underpinning the National Disability Strategy, that:

* Are led by people with disability
* Better involve people with disability in design, funding, delivery and evaluation of policies, programmes and services
*

Demonstrate greater community engagement in removing barriers and supporting inclusion of people with disability in the life of their communities

* Take a more universal approach so that services, environments and communities are accessible and usable by all people to the greatest extent possible without the need for specialised modification
* Take a life course approach that takes into account a person’s needs and aspirations over their lifetime, paying particular attention to milestones and times of transition
* Take a person-centred approach where policies, programmes and services for people with disability are designed to respond to the needs and wishes of each individual
* Focus on independent living where services and equipment that facilitate the greatest level of independence and the enjoyment of a lifestyle that reflects the choices of people with disability
* Demonstrate partnerships and interconnectivity between mainstream areas and disability
* Raise the standard above normalised practice in mainstream services and programmes (ie going above and beyond those organisations who are specifically funded to provide specialist services to people with disability)
*

Focus on greater inclusive practices.

 

 

 

 

 

 

 

r

  Leadership Benchmarks have universal ''Patient-Centred" relevance
 
Commitment Read in parallel with the characteristics of Patient Centred Leadership the aforementioned benchmarks are relevant across all endeavours related to the implementation of Australia's National Disability Strategy. Unfortunately, experience is that some organisations still fall well short of strong and enduring commitments to all of these benchmarks.
Without such wholehearted commitment (including by all government agencies) the implementation task runs the risk of unnecessary delays and frustrations - more about leadership.
  Awards process highlights systemic shortfalls in protecting many with MS
When commending the selection of Kerri Cassidy as winner in the category '"Excellence in Justice and Rights Protection"' Peter Sullivan, convenor of the Multiple Sclerosis Network of Care, Australia observed "It needs to be said that there has been, and continues to be, a systemic failure in health care (both process and content) whereby generations of Australians with multiple sclerosis may have been under-diagnosed/misdiagnosed in relation to cardiovascular comorbidities with disastrous medical consequences''.
  Strategic Direction - Bypassing systemic roadblocks
  Peter went on to say "by any measure, the well-deserved acknowledgement of Kerri’s ongoing voluntary contributions is a significant step in highlighting ways to improve the well-being of those living with MS. There are two separate but related issues about which consensus is urgently needed - further delays/systemic roadblocks only exacerbate an already exponential problem. No new medical procedures or new medications are involved.

First is the need for a national process enabling ready access to cardiovascular (including CCSVI) screening across the MS population. Second is the need for individual guidance about options for best managing the screening outcomes. Angioplasty can be one of those options
.  A draft patient-centred Implementation Strategy has been developed to guide this process" Access this Strategy.
  Political Leadership in times of change
  In June 2016 Tony Nutt, the Coalition Governments National Campaign Director when addressing this issue said "the Australian Medical Research Future Fund (MRFF) provides the opportunity to strategically address national health priorities in a more cohesive and coordinated way than previous approaches....it will consider: the burden of disease on the Australian community; how to maximise the practical benefits from medical research to as many Australians as possible.''
  What is not clear is the process/processes whereby patient-centred initiatives of the type championed by Kerri are actually referred to the MRFF for guidance. It does however seem appropriate that such referral be made/facilitated by the Assistant Minister for Social Services and Disability Services, the Hon Jane Prentice MP as an adjunct to the Ministers role in facilitating the annual Disability Awards program..
  Human Rights Commission
The Australian Human Rights Commission can investigate and resolve complaints of discrimination, harassment and bullying based on a person’s disability.  On 4 October 2016 Commissioner Alastair McEwen launched a national consultation for people with disability - watch an introductory video. Supported by the signatures from more than 2,000 Australian families living with MS Kerri highlights that, for a variety of reasons (including apathy) those diagnosed with MS do not have the same access rights to vascular screening and treatment as is available to the general community. Given that 80% of MS populations have cardiovascular disorders the consequences are devastating.
  .  
  It seems similarly appropriate that a referral to the Human Rights Commissioner also be made/facilitated by the Assistant Minister for Social Services and Disability Services as an adjunct to the Ministers role in facilitating the annual Disability Awards program..

   
   
     
     
     
 

 
 
 
TurnOnthe Tap
         
   
 
CCSVI Comorbidities
 
 
 
 
 
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What is the Number 1 MS Issue?
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Enhancing Professional Expertise
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Congratulations to Kerri Cassidy - A 2016 National Award Winner
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
What next is Needed?
 Strategic Direction
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
What are the Penalties
 for Doing Nothing
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What do we know about Patient Centred Leadership?
 
 
 
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