Welcome

Welcome

Welcome to this 7th edition of the Fix NDIS Campaign Newsletter. Our aim to to get several people from the disability community elected to the next federal parliament to Fix NDIS. No-one else is going to do it for us, so we will do it ourselves. Subscribe. Keep informed. Become involved.


John’s NDIS Funding Crisis – 2 Years of Neglect

by Aaron Cotton, Democracy First candidate for the seat of Whitlam.

John’s NDIS plan has been exhausted every year due to chronic neglect from the NDIS and NDIA planner errors. Despite living?in?Supported Independent Living (SIL) since 2022, his plan still states he lives with his mother, and the funding provided covers a 1:3 support ratio instead of the required 1:2. This ongoing underfunding threatens John's care and safety.

Aaron Cotton is co-founder of Marco Polo Portal www.marcopoloportal.com

Escalations Timeline:

  • May 2022: Initial SIL funding provided?in?NDIS plan stating John was 1:2, but funded at less than 1:3.
  • Sept 2022: John moved into a SIL home.
  • Sept 2023: S48 Change of Circumstances review requested.
  • Dec 2023: S48 review inappropriately closed without proper contact.
  • January 2024: s48 lodged.Feb 2024: Planner meeting, but no increase?in?funding due to delegate authority limits. New plan created with no updates from 2022 (rollover). s100 submitted.
  • April 2024: s100 overridden by s48 following NCC officer providing misleading information to plan nominee, creating more delays.
  • May 2024: John's situation discussed?in?person with NDIA CEO Rebecca Falkingham—no action taken despite personal assurances.
  • June 2024: NDIA planner threatened that reassessment would cut John's SCCP funding and incorrectly classified his S48 as a home living application, closing the s48.
  • Sept 2024: S100 of the closed S48 lodged.Oct 2024: Support coordinator escalates s100 request. The NDIS complaints team makes it a high priority, but no resolution yet.
  • Oct 2024:?Email sent to Bill Shorten, Charis Mullen (MP), Rebecca Falkingham (NDIS CEO), Luke Howarth (MP), Desmond Lee (NDIS QLD general state manager), Ed Duncan (NDIA BM Home & Living Planning and Operations), Andrew Parsons (GM Home & Living), Claire Callaghan (BM Home & Living Supports), requesting urgent escalation and reassessment.

Professional Recommendations:

Reports from OTs and Behaviour Support Specialists since 2021 state John needs 1:2 support for daily tasks and personal care. Without it, he faces safety risks?in?activities?of daily living.If you or someone you know can help escalate this issue and end the endless cycle of bureaucratic rollovers and NDIA planner mismanagement, we need your support now.

There are many people in John's situation at the moment. We need to fight for John’s rights and ensure that many others don’t face the same neglect.

Together, we can push for real NDIS reform.

John’s life is at risk due to continued NDIS failures—action is needed now!

Aaron Cotton is co-founder of Marco Polo Portal www.marcopoloportal.com


Campaign Manager | Chief of Staff | Democracy First

We are Hiring | Two Positions

Expressions of Interest are sought for two key positions in Democracy First.

Australian politics and governance are going through a historic transition. The two parties of career politicians which dominated public governance and public debate in Australia for 100 years are now passing, being no longer fit-for-purpose in the 21st century.

In their place, a process of building a new major party, grounded in civil society (families, communities, small business, voluntary associations) and positioned in the mainstream centre, neither Left nor Right in identity or ethos, is underway.

This process of building will run through the next 7 months including the next federal election, then continue through the following two years to include the Victorian, NSW, WA and SA state elections. We are seeking appointments for this period of two years plus.

Campaign Manager

Brief: To direct the Democracy First campaign in the federal election and the state elections that follow, developing communications, marketing, and fundraising systems as required.

Chief of Staff

Brief: To direct the organisational development of Democracy First as a large grassroots movement with the capacity to operate as a new major party in Australian politics.

Both positions may operate from any Australian location.

Enquiries:

Vern Hughes 0425 722 890 [email protected]


Aged Care Reform Now

The challenges in reforming NDIS are repeated in aged care.

Sue Watts is a reformer in aged care, and a member of the grassroots group Aged Care Reform Now. www.agedcarereformnow.com.au Sue lives in Hobart.

This is Sue's testimony to the Senate Committee on the new Aged Care Bill. Sue's voice should be heard far and wide. The Aged Care Bill is deeply flawed. It needs major amendments.

Sue Watts

"My husband died recently in an aged-care home, where he lived for three years. He was 73 and had Dementia and Parkinson's disease. A few weeks before he died, the unit where he lived had a case of COVID. The person with COVID was isolated. No-one else had COVID at that time. The shocking response from the management was to lock all of the doors to the outside area, so that he, and others, could not get outside to get air, sun, exercise or much-needed physio.

For 2 weeks my husband tested negative but he was not allowed to freely move around the grounds. After a couple of weeks of being contained like a caged animal he told a nurse he felt suicidal. It broke my heart. This is 2024, not 2021. It happened just weeks ago and it's still shocking to me. I tried to reason with the facility, but they ignored my pleas.

Unfortunately, mistreatment such as this is not isolated, because providers decide on what they report.

What should the new legislation look like?

Well, I think there are 5 areas that must be included. The first is criminal penalties. These were negotiated out of the Aged Care Bill a few weeks ago and must be put back in, to make sure senior executives and boards are held accountable for their actions.

The second is civil penalties. Why were half the civil penalties cut from the Aged Care Bill exposure draft? Civil penalties must go back in ...

Third is mandating that residential aged-care providers employ appropriately qualified and skilled staff. ...workers looking after people with dementia must have formal dementia training. There is none.

Fourth is continuous, on-the-ground regulation. We must have a system which doesn't let providers self-report. For example, I placed a complaint with the Commission about getting my husband's food preferences met—you know, a few things like getting a poached egg for breakfast. After six months—yes, six months, I was told by the Commission officer that ... my husband's case was unresolved and would be closed. The officer said, 'We just can't make them do anything.'

This was at the time when the Maggie Beer food in aged care program was being shown on TV. It made me sick.

Fifth is a truly independent regulator who has immediate enforceable powers over providers. I and so many others around the country with lived experience need you to know that the current watered down bill before you is not fit-for-purpose. The goal appears to be to convince us that it is a rights based act, but it is not. It is a lot of regulatory words, but they are not actually enforceable. I would say that it's the emperor's new clothes."



What We Believe

1. Everyone matters and is entitled to a say, but most of us have been denied a voice. We feel disillusioned with politics and disappointed with our governments.

2. Politicians from Labor and Coalition parties think disability and NDIS are worthy enough BUT they think they know best and will continue to deliver what they decide is appropriate, no matter what anyone else in the community might think, and no matter that this negates the idea of ‘co-design’.

3. Political representatives should be facilitators of community discussion, participation, adult education, development of local solutions, and be 100% accountable to local people.

4. We don’t want career politicians. We want people who are pioneers, innovators, listeners, leaders and change makers.

There should be a maximum of 3 terms for politicians, then back to your day job so someone else can be a representative.

5. People in the disability community value persons and relationships ahead of systems and bureaucracy. We value stable connections and personal contact. We are wary of Big Business and Big Government. We want bureaucracy kept to a minimum and we want creativity and initiative to flourish.

6. We will create a Local Solutions Hub in each electorate to generate better?ways of doing things?in community inclusion, family support, small business support, local job-creation, support for ageing people, local power generation and carbon sequestration, healthy living and illness-prevention.

7. Every?government agency and department should have an Independent?Panel of Citizens?to monitor and?scrutinise spending with the aim of eliminating waste, duplication and rorts.

8. Our representatives have an obligation to consult with colleagues and their voters, and vote accordingly in Parliament, upholding the spirit of this What We Believe statement. At the end of the day, our MPs have a right to vote in accordance with their conscience on every matter.

Authorised by Vern Hughes, 30 Wilkins St, Yarraville Vic 3013

Enquiries: Vern Hughes 0425 722 890 [email protected]

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