Senate, Community Affairs Legislation Committee

(National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission Title: “The D in the NDIS must stand for Dignity”

From: Anonymous Date: 19 July 2024

INTRODUCTION ……………………………………….. 4

CURRENT SITUATION …………………………………… 8

NDIS - BILL (2024 NO.1) - HUMAN RIGHTS ISSUES ………………….. 8

DISABILITY ROYAL COMMISSION REPORT - IGNORED ………….. 8

INDEPENDENT REVIEW INTO THE NDIS - DISCRIMINATORY ………. 9

BIG DISABILITY PROVIDERS - TOO MUCH MARKET POWER ……. 10

WAR ON PEOPLE WITH DISABILITY - GOVERNMENT MEDIA CAMPAIGN … 10

NDIA DISCONNECT WITH PARTICIPANTS AND THE SCHEME …… 11

KEY AREAS OF THE NDS BILL - OFF TRACK ……………….. 12

CHANGING “NDIS REASONABLE AND NECESSARY SUPPORTS” ….. 12

NARROWING THE DEFINITION OF SUPPORTS ………………… 12

CHANGES TO BUDGET SETTING PATHWAY WITH THE USE OF NEEDS ASSESSMENT ……………………………………………………………………… 12

INCREASED BROAD POWERS FOR THE NDIA ………………….. 13

BUDGETS NEED TO BE TRANSPARENT IN HOW THEY ARE CALCULATED ………………………………………………………………………. 13

EXTERNAL INDEPENDENT REVIEW VIA THE AAT ……………….. 14

CONCLUSION ……………………………………………….. 14

END OF SUBMISSION ……………………………………….. 15

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THE D IN NDIS MUST STAND FOR

      DIGNITY

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INTRODUCTION

Thank you for the opportunity to submit my views on the proposed NDIS (2024 No.1)

legislation.

I am a sister, a carer and a plan nominee of a very special man with Down Syndrome who has goals, aspirations and passions like all of us. He wants to live in his own home, his way! He wants to be accepted by society to go shopping and the confidence to interact with sales assistants, he wants to go to the movies and buy his own ticket, work out at the gym with his trainer and attend art classes to learn how to paint at the local art gallery. He wants to have close relationships and enjoy time with family and those around him.

Is the Government ready to accept that we need to invest in people with a disability? The NDIS is an insurance scheme. Insurance is designed to protect assets and our greatest asset are human lives!

If so, the only answer to the NDIS Bill (2024 – getting back on track) is to start again because the proposed legislation is based on a report “Independent Review into the National Disability Insurance Scheme”1 that has not had proper review of the insights, research and assumptions for its recommendations. In my review, it is regressive and outdated thinking because it will not accept a person with a disability to live an ordinary life in Australia.

My brother is now in his early 50s and living his best life as a result of life-changing support from the National Disability Insurance Scheme introduced in NSW July 2017.

Caring and supporting my brother has always been second nature as we are only a few year’s apart and we have a strong bond. Our parents are no longer with us and we have five other siblings that play various roles.

My lived experience is relevant to this Senate Committee with considerations into the draft NDIS Bill (2024 – No1) because I work closely with a sibling with a disability, I have jumped all the barriers and challenges to enable my brother to live independently, in the 1 NDIS REVIEW “Working together to deliver the NDIS” 2023

community and in his own home. I also have knowledge and understanding by working
across both registered corporate disability providers, allied health and mainstream
services to deliver inclusive, quality and safe supports for my brother.

It took a few years to understand the scheme. It also took a few years to enable innovation and expertise to be attracted to the disability sector. The development of appropriate accommodation in the community such as Special Disability Accommodation (SDA) and innovative programs both within the sector and mainstream that aren’t a “day care”, that offered training, capacity building and real personal development. Another service that emerged was the ability to find quality staff via online platforms allowing for recruitment of specific skills, experience and personality traits.

I work closely with my brother to provide a ‘self-managed model’ in an SDA apartment so he can have supported decision making, working with him to find quality support workers via an online platform that are hand-picked on a criteria that matches his needs and preferences. The majority of his 10 person team are medical and allied health students.

These are the candidates that make great carers as working as a Support Worker is part of their chosen caring career (OT, Exercise Physiologist, Nutritionist, Nursing and Medical Student). This model is a win/win as having the opportunity to work closely with my brother they are learning how to support a person to live independently with daily living, personal care, routines and their various roles within their life. These university students are the next generation of health professionals who through this ‘model of care’ have first- hand experience of how to empower, care for and support a person with an intellectual disability. Besides aligning with the National Health Map provides an income while they study as they are not financially remunerated for their university placements (medical and occupational therapy). This is a long way away from the proposed group home plan of the NDIS Review and what the Royal Disability Royal Commission called for was innovation in this sector.

Since late 2020, after several years of pursuing new accommodation, my brother now lives in his own home which is an SDA apartment with a mix of onsite support, one-to-one support and informal support from me. We now have an Individualised ‘Model of Care’ that works for my brother, to live as independently as possible.

Assisting my brother re-imagine his life and enabling him to live an ordinary life has been a

dream come true. He has also been able to reach his life goals with choice, self-

determination and cost effectively with his the use of his NDIS Budget.

However, while the NDIS act (2013) rolled out between 2017-2020 it’s still in its growth phase of attracting the right people to the industry, products and services to deliver real competition into the disability sector particularly with outdated ‘models of care’ like

corporate group homes and day programs. We need to maintain the momentum of bringing in new innovation companies and organisations, increased competition to deliver better programs, employment training, inclusive courses and specialist disability accommodation.

The Recommendations by the Independent Review (yet to be properly scrutinised with public debate) and together with proposed draft legislative changes to the National Disability Insurance Scheme (2024 No.1) aims to deny dignity to many Australians living with disabilities the right to live in their own home, to choose who supports them, live with choice and self-determination. Operationally the NDIS is already doing this by cutting NDIS Plans without the legislation backing it.

If this first trench of the NDIS Bill passes set’s up for the Budget Setting Pathway2 for people like my brother with an intellectual disability or a person with a physical disability that require more than 8 hours of physical support or supervision will be forced to leave their homes according to the NDIS Independent Review (27 October 23). They will be defined as requiring 24/7 and allocated funding for 1:3 only3. This would only allow for the ‘group home’ model taking away ‘choice and control’ which are the fundamental principle of the NDIS Scheme and the United Nations Convention on the Rights of Person with Disabilities (UNCRPD).

To legislate the proposed legislation will be destructive to the intent of the scheme.

The National Disability Insurance Scheme

The NDIS must be made sustainable but not at the cost of moving back to days where

Australia was insensitive to and discriminated against other Australians, an Australia that

was blind to the humanity of other Australians it deemed (and demeaned as) different.

It is Australia that is different now. A much better Australia with the world class NDIS scheme. We need to protect it, continue to develop it and to recognise that people with

disability need to be involved in its design.

But the proposed legislation, if enacted, will change that for my brother and the majority of others with high complex needs that do not want to live in congregate care of 1:3, who want a say who cares for them by selecting providers that meet their needs through self- management, enabling ‘reasonable and necessary supports’ so they can have choice of where they live and how they live their life.

The proposed NDIS Bill (Getting the NDIS Track) is “off track” and is going the wrong way – go back!

The D in NDIS must stand for dignity — not Discrimination against people with Disability.

CURRENT SITUATION

NDIS – Bill (2024 No.1) – HUMAN RIGHTS ISSUES

The legislation is based on the Independent Review into the NDIS (October 2023) which has not been scrutinised and underpins the legislation changes. It has also ignored the finding of the Disability Royal Commission Report. This is a flawed process that proposed to change the landscape for people disability for the worse in order not to invest in delivering supports to help them live their life.

DISABILITY ROYAL COMMISSION REPORT – IGNORED

The final report from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability was released in September 2023 and cost over 520 million dollars. The report includes 222 recommendations, which will require ongoing advocacy. These recommendations are aimed at improving laws, policies, systems, and processes to ensure a society that properly supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation.

While we have the current NDIS Bill (Getting the NDIS on Track) the key recommendation of the introduction of an Australian Disability Rights Act has yet to be introduced. Specifically called out ‘group homes’ as white picket fences with institutional care. Recommendation 7.43 and 7.44 regarding phasing out of group homes.

These recommendations are at odds with the Independent Review into the NDIS (2023) which is the basis for the proposed legislative changes NDIS Act (2024).

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INDEPENDENT REVIEW INTO THE NDIS – DISCRIMINATORY

This report has failed to take the insights and recommendations from the Disability Royal

Commission.

In fact the opposite is proposed by targeting participants who have high support needs and require significant amount of assistance throughout the day as well as overnight supports.

As reported on page 138 of the Independent Review Report anyone who requires more than 8 hours of support or supervision as ‘defined’ as 24/7.

There are close to 41, 000 participants receiving 24/7 living support who require at least 8 hours of active support and/or supervision with activities of daily living and some level of support for the remaining hours of the day (while at home?), including overnight assistance (whether active or passive)

This appears to be a bug bear for the NDIS Independent Review to support people with high support needs. Isn’t that what the NDIS Scheme was set-up to care for people a disability?

Housing and living supports account for a large share of the overall scheme costs, SIL payments were $8.8 billion, representing a quarter of the total scheme payments.

The report goes on to say on page 141 of the Independent Review Report “The Panel’s Vision”.

There should be a new budget setting pathway for participants with 24/7 housing and living support needs…..

In general, reasonable and necessary funding should be based on the average shared support ration of one worker to three participants (1:3) consistent with an assessment of need that determines the maximum support intensity and level of overnight support that a participant is eligible to receive. It is to living with others.

This is no vision but regressive and outdated thinking with no consideration for the

individual’s needs, wants and preferences. This is the fundamental thinking behind the

legislation.

People with disabilities should have options to live outside living with others based on their

needs, wants and preferences.

BIG DISABILITY PROVIDERS - TOO MUCH MARKET POWER

It’s is important that the market enable new innovative providers for housing and

community participation for people with quality programs of learning, interaction and

engagement. The opening of the disability sector has encouraged innovative organisations

like Enliven Housing across Australia. The opportunity to use online platforms.

Currently the corporate disability providers are rigid, not transparent and internally focused

vs person centred. There still remains threats of withdrawal of services and go somewhere

elese if you raise issues of concern.

The NDIS focuses on how many organisations that are unregistered vs registered but the

focus should be on quality organisations and companies, innovation and competition,

investing in the sector vs cost cutting to only protect current corporate providers.

WAR ON PEOPLE WITH DISABILITY – GOVERNMENT MEDIA CAMPAIGN

The current media campaign targeting people with disability for costing the Australian tax

payer money is cruel and causing the community to suffer the stress of negative

community perceptions about the way they live their life. Disable people are under attack

on the very legislation that is meant to protect them, support them and make all people

living in Australia feel proud of our achievements.

NDIA Disconnect With Participants And The Scheme

Let’s get the reform back on track by looking at the very organisation administrating the

plans with lengthy delays, not evaluating properly the reasonable and necessary need and

writing generic decision letters for outcomes that deny the funding. This is costing

participants and their families time and money with seeking more reports, time and time

out of the workforce to manage the participants reports and submissions.

The NDIS does need to make individual funding decisions based on reasonable and

necessary supports.

KEY AREAS OF THE NDIS BILL – Off Track

Amendments that look like small changes will have enormous impact. The opportunity to scrutinise this Bill is important as it will take-away the human rights of people with disability.

Key areas of serious concern:

Changing “NDIS Reasonable and Necessary Supports”

The changing of “NDIS Reasonable and Necessary Supports” to “Reasonable and Necessary Budgets” will limit the supports a participant can receive to have their needs met, reach their goals and live an ordinary life. This will also mean putting the participant at a safety risk with supports not adequately funded in their own home.

Narrowing the definition of Supports

The new definition of supports are too narrow (Section 10A). The fundamental purpose of supports relates to the persons impairment. How do they overcome barriers to functioning everyday life? The key focus with inclusion into participation and everyday expenses. Not focusing on the participant.

Rules (Section 10 B and 10 C) what’s in and out is not defined and ambiguous. The legislation sets up for the rules however there’s no confidence in the government to be transparent around these rules and not currently revealed.

Changes to Budget Setting Pathway with the use of Needs Assessment

The proposed ‘reasonable and necessary’ budget will provide “block funding” or funding described as clear, fair and consistent way.4 This will be based on a needs assessment.

The needs assessment determines if the person needs 24/7 living supports. As the 4 NDIS REVIEW “Working together to deliver the NDIS” 2023 p141 and p143 (Figure 8)

Independent Review Report stated this will require 1:3 support. Exceptions for 1:1

supports.

This won’t be in line with the participants needs, wants and preferences that are unique to their particular circumstances. This will force people living independently now into a group home model and prevent future generations from accessing a life free of neglect, abuse an exploitation.

As well as accessing supports of 1:1 for economic and community participation.

Increased Broad Powers for the NDIA

The NDIA will have more power to make people undergo assessments or provide information. If people are unable to comply (timeframe, availability of clinician/participant to produce report, health) the plan will be revoked or suspended.

Budgets need to be transparent in how they are calculated

Budgets are currently built around approved outcome domains with support categories to support participants reach for their goals These categories relate to line numbers that invoices are approved against the plan.

PURPOSE	OUTCOME DOMAIN	SUPPORT CATEGORY
CORE	Daily Living	01 Assistance with Daily Life
	Daily Living	02 Transport
	Daily Living	03 Consumables
	Social and Community Participation	04 Assistance with Social, Economic and Community Participation
Work		04 Assistance with Social, Economic and Community Participation
CAPITAL	Daily Living	05 Assistive Technology
	Home	06 Home Modifications and Specialised Disability Accommodation
		(SDA)
CAPACITY	Choice and Control	07 Support Coordination
BUILDING	llome	00 Improved Living Arrangements
	Social and Community Participation	09 Increased Social and Community Participation
Work		10 Finding and Keeping a Job
Relationships		11 Improved Relationships
Health and Wellbeing		12 Improved Health and Wellbeing
Lifelong Leaming		13 Improved Leaming
Choice and Control		14 Improved Life Choices
Daily Living		15 Improved Daily Living Skills

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Currently CORE (category 1 and 4 are flexible) enables flexibility between 1 and 4.

More flexibility required within capacity building budgets. However the determination and transparency needs to be kept separate from the administration side of moving funds between categories. The type of flexibility participants are seeking if you run out of category 15 “daily living” could be able to be taken from relatable categories such as 09 “increased social and community participation” However the suggestion for a ‘whole of person budget’ without the transparency of the budget categories about preventing a proper review of where the gaps are in the budget and assessment. This is a deliberate concealment of the underpinning of the participants budget.

External Independent Review via the AAT

Currently there are over 4000 cases awaiting review by the AAT. This is because the NDIS operational guidelines is already making decisions putting participants at risk by not providing the necessary supports to live an ordinary life. There can be many exceptions of where 1:1 living support, with no or limited sharing is reasonable and necessary. There can be reasons where elderly parents can no longer provide a safe home and need to access a group home for their son or daughter. These are just many of the cases the AAT assessors look at and will continue to need to review appropriate decision making.

If the legislation doesn’t enable external independent review and this legislation is not stopped there will be no recourse to address fundamental human rights issues.

CONCLUSION

The proposed legislation, if enacted, will change that. The D in NDIS must stand for dignity — not discrimination. This is an issue for all of Australia.

A democracy without dignity for all is not at all a democracy.

End of Submission

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