Redirect Funds to Save Type Ones!!

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PETITION TO THE AUSTRALIAN GOVERNMENT FOR SENATE INQUIRY INTO THE FUNDING OF TYPE 1 DIABETES.

REDIRECT FUNDS to SAVE TYPE ONEs!!
Redirect Funds to Save Type Ones!!
To the Honourable President and members of the Senate in Parliament assembled:
The petition of the undersigned shows that, currently, individuals and families living with Type 1 Diabetes are experiencing a shift away from their consumer voice, empowerment and personalised care as Government policy and decisions see funding removed from the individual and family. This is resulting in increasing expense and inequitable access to treatment and services for the management of this complex condition. This is contrary to the purpose of Goal 3 of the National Diabetes Strategy 2016-20 which states: “ …it will require a transformation in the way care is delivered in order to make it more consumer focused, team based and proactive. Consumer engagement, awareness and self-management will be major factors in the success of this goal.”
Your petitioners ask that the Senate conduct an inquiry into the Government funding processes and governance for Type 1 Diabetes. Funding for services and quality care is being eroded, duplicated and poorly used. It is imperative and urgent that the funding is redirected to services that facilitate best possible medical care that make a difference to the risk of short-term and long-term outcomes including early death.

The Senate inquiry is required to review the independence of funding and support decisions made by the Government, and their delegates, to ensure the equitable and efficient use of public money for those living with Type 1 Diabetes to remain consistent with the National Diabetes Strategy.

Key areas of inquiry required are:
• Decision making processes for funding and health support programs for Type 1 Diabetes, including health care card, private health insurance, allied health plans, insulin pump program, NDSS
• Review of NDSS funding processes
• Audit of NDSS and governance processes
• Roles and responsibilities for NDSS agents and Australian Government appointed administrators
• Full disclosure of funding interdependencies of the Diabetes organisations and “Alliance partners” (Diabetes Australia, APEG, ADS, ADEA and JDRF)
• Affordability and equity of access to health care supports, medication and international standards of care for Type 1 Diabetes
• Health outcomes and result measures of Type 1 Diabetes funding and programs
Background:
Type 1 Diabetes is a lifelong, relentless condition that when not effectively managed has devastating impact. Managing this condition is a 24/7 requirement. The burden of Type 1 Diabetes affects those living with Type 1 Diabetes and their families emotionally, physically and financially. The Australian Government, Department of Health and Minister for Health are aware of the needs of this condition and the impacts, including Australia’s poor health outcomes. In 2017 data released identified that 73% of Australian children do not meet the required medical targets – prompting international experts call for “urgent action”. These children are tomorrow’s adults, and the children of yesterday are today’s adults living with type 1 diabetes in Australia.
The past few months have been extremely traumatic, confusing and frustrating for individuals and families with Type 1 Diabetes. We believe the Federal Government should INVEST directly to those with type 1 diabetes NOW to SAVE LIVES PREVENT COMPLICATIONS AND SAVE COSTS in the future – not divert funding to organisations or duplicate programs. Some of the inconsistencies in how Type 1 Diabetes is funded and supported include:
• The Federal Government has withdrawn the Health Care Card for many families and young children with Type 1 Diabetes. This Health Care Card (HCC) ensures equity of access to subsidized essential medical supplies, including insulin which is necessary for the maintenance of life. The Federal Government has actioned this despite our united calls (and a "live"  motion from Senator Ricky Muir) that all people with Type 1 Diabetes need a health care card for life to assist with the financial burden of this condition and accessing medications that we need to live. Where will this stop? How will this be further undone? The justification for taking away the HCC is to fund “digital support and services” (See https://www.humanservices.gov.au/individuals/news/introducing-new-services-carers-and-carer-allowance-income-test but millions of dollars of public funds are already going to Government appointed charities such as Diabetes Australia to do this exact thing. Why shouldn't the NDSS funds that are currently going to Diabetes Australia for support services, phone lines and education resources be re-directed to Type 1 Diabetes patients to subsidise necessary medication to promote consumer focus and self-management as per NDS goal 3?
• Proposed Private Health Insurance changes will see that Insulin Pumps will be covered in the Gold tier insurance, meaning that we will all have to spend more to ensure that we are able to access and be eligible for an insulin pump for ourselves or our kids. How does this possibly promote consumer focus and self-management? This will particularly discriminate against people in rural Australia who gain little value in private health insurance because of scarcity of Private Hospitals in regional Australia. This policy will widen the gap between city and country health care even more.
• Federal Government funding for Continuous Glucose Monitoring remains inequitable, with anyone over 21 not able to access these products without substantial out of pocket costs. The peak risk of death in young people with Type 1 Diabetes is between 18 and 25 years so such policy could be life-saving. This intervention is particularly helpful in producing better outcomes and is especially important for pregnant women with Type 1 Diabetes. How do you explain to a 21 year old with little or no income that they are no longer of interest to their Government who will not provide technology that had changed their life (CGM) and helped made them healthy?
• The Freestyle Libre, flash glucose monitoring system is not funded at all for under or over 21 years of age – how was this decision made to exclude this technology option when it can benefit so many, especially those young people who refuse to wear a more obvious device such as CGM to avoid discrimination?
• The Federal Government has allocated $6 million to Diabetes Australia to conduct a "needs analysis" for children with Type 1 Diabetes at school and duplicate a e-learning program that already exists and has international endorsement. All children at school with type 1 diabetes need help each year - some more than others depending on the individual needs and circumstances. Why is the funding not attached to all children and triggered if parent, health team and school require intervention. Why is a costly extra layer of bureaucracy being created when those funds could be used directly to help children at school. Why is the Government involving Diabetes Australia - a charity with no accountability for the health outcomes of individuals - whose main role should be advocating for better conditions for children and families, not trying to act as a medical advice provider for our children at school. Why is the government providing public money to duplicate education resources?
• How much Federal Government money is given to the states to assist children with disability in school and why had Type 1 Diabetes suddenly been excluded from automatic funding for very young children at school in some states (e.g. Victoria) when they have no possibility of safely caring for themselves. Why are parents being expected to help the school out or change schools because the young children have not been given appropriate funding?
• Whilst the Government adopts a model of funding for aged care, NDIS and other conditions to allocate funding to the patient for the patient to determine the services to meet their needs, Type 1 Diabetes via the NDSS is being controlled by organisations who are dependent on the funding for their existence? How does this benefit the patient and ensure that public funds are being used for maximum benefit to those accountable and responsible for the health outcomes? How is this consistent with the National Diabetes Strategy goal 3?
• If we choose not to go to a large hospital for care to receive personalised, team based, proactive care (National Diabetes Strategy Goal 3), we receive only 5 rebatable visits per year to the team including a Diabetes Educator. We need extra visits for proactive consumer training on insulin pumps and continuous glucose monitors for maximal benefit and to encourage self -management. We need access to dieticians and psychologists and an automatic chronic disease plan because Type 1 Diabetes is a serious incurable condition that has arisen through no fault of our own. Why are those with Type 1 not receiving the investment in their future health?
• The Australian Diabetes Educators Association receives approximately 30% of their revenue from the NDSS via Diabetes Australia to develop guidelines and professional development for the practice of diabetes education for professionals. But more recently Diabetes Australia NSW has created their own education and training “Diabetes Qualified” (https://www.diabetesqualified.com.au to provide accessible and engaging diabetes education and resources for health professionals. Diabetes NSW are using NDSS funds to partially fund the courses for individuals. Who then is responsible and authorised for education? Why are there two organisations that are interrelated providing similar services? With both the ADEA and Diabetes NSW recipients of public funds via the NDSS how has such duplication occurred whilst individuals and families see funding being removed?
• The relationships between doctor groups receiving funds from Diabetes Australia and JDRF for research or even doctors’ education being funded by the public through NDSS raises questions of conflict of interest when they have signed a Memorandum of Understanding to support each other. Is this process independent or not really at arm’s length? What oversight is being undertaken on the correct use of public money when Diabetes Australia have formed an Alliance with APEG, ADS, ADEA and JDRF to collaborate and cooperate when these organisations have dependency on each other for funding and endorsement of funding proposals? How has the Government permitted such an arrangement to exist?
We ask the Government to PLEASE “Redirect Funds to Save Type Ones!!”



Solution
There seems to be millions of taxpayer dollars being used for purposes that are questionable when those funds could be used directly in the best interests of the patient – children and adults living with Type 1 Diabetes. Ensuring that all Australians living with Type 1 Diabetes get equal access to the medical supports for this condition is slipping further away whilst the Government duplicates resources and directs public funds to organisations rather than directly to the patient. The system needs an investigation and overhaul to obtain maximum benefit for the health dollar and an inquiry into how each of the above scenarios has arisen and how to address each issue to INVEST IN THOSE WITH TYPE 1 DIABETES NOW to SAVE LIVES, PREVENT COMPLICATIONS AND SAVE COSTS IN THE FUTURE!
It essential that funding is used effectively and is allocated to the benefit of the individual. In the face of the calls for urgent action on Type 1 Diabetes, Australians are entitled to transparency and understanding how our money is being spent, where it is going and for what purpose and how and who it will benefit. Our condition should not be providing organisational opportunities, it must provide individual opportunities. Redirect Funds to Save Type Ones!!
Please join us in signing a petition asking the Australian Senate to conduct an inquiry into the effectiveness and efficiency of funding for Type 1 Diabetes.



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