NCID submission on intellectual disability and family support

ncid.org.au

n a t i o n a l     c o u n c i l    o n

i n t e l l e c t u a l d i s a b i l i t y

NCID SUBMISSION

NATIONAL DISABILITY INSURANCE SCHEME BILL 2012

NO. , 2012

A BILL FOR AN ACT TO ESTABLISH THE NATIONAL

PURPOSES

Version 1.0

Date: 24 January 2013

National Council on Intellectual Disability (NCID) has over 5,000 members representing all 8 states and territories. In addition to having people with intellectual disability on our Board, NCID receives policy advice from Our Voice. Our Voice is a committee of NCID’s Board, the membership of which is exclusively people with intellectual disability representing all states and territories.

NCID is the recognised national peak body with the single focus on intellectual disability, ie, our actions and priorities centre on issues that affect the lives of people with intellectual disability and their families.

NCID’s mission is to work to make the Australian community one in which people with intellectual disability are involved and accepted as equal participating members. We do this by:

listening to people with intellectual disability and their families promoting and upholding the UN Convention on the Rights of Persons with Disabilities developing and promoting creative policies and practices speaking to politicians, public servants, business and community leaders about the lives of people with intellectual disability and their right to have equality of opportunity

National Council on Intellectual Disability is a social proﬁt organisation. NCID was created in 1971 by parents and friends in an endeavour to improve the quality of life of people with intellectual disability and to ﬁll the need for national unity and information.

National Council on Intellectual Disability

PO Box 771 Mawson ACT 2607

T: 61 2 6296 4400

e: ncid@ncid.org.au

w: ncid.org.au

Rob Allen Mark Pattison

President Executive Director

National Council on Intellectual Disability ! 2

Statement of Principles

All people have inherent dignity and worth and equal and inalienable rights. All people are valued members of the Australian Community. People with intellectual disability as equal participating members of the Australian Community have the same rights: to respect for their individual autonomy and independence to make their own choices to participate in decisions which affect their lives to pursue any grievance which affects their lives to diversity of choice for housing, education, work, recreation and leisure to equity and justice to be empowered to take their full place in the Australian Community to dignity and privacy in all aspects of their lives

National Council on Intellectual Disability will:

✓ work to make the Australian Community one in which people with intellectual disability have full and equal enjoyment of all human rights and fundamental freedoms and are involved and accepted as equal participating members. ✓ promote and protect the human rights of all persons with intellectual disability, including those who require more intensive support.

Consultation Statement

National Council on Intellectual Disability consults people with intellectual disability and family members through our State and Territory Agency Members. In particular we: ➡ conduct an annual survey of members and stakeholders ➡ hold two meetings a year, rotating through all States and Territories ➡ present at the Having a Say Conference each year, attended by over a 1,000 delegates the majority of whom have a disability ➡ hold forums on speciﬁc issues ➡ sponsor actions and representations on issues of importance to people with disability On the issue of National Disability Insurance Scheme National Council on Intellectual Disability has consulted extensively with our members, people with intellectual disability and family members.

The National Disability Insurance Scheme (NDIS) has been the focus of NCID’s work for the last 12 months and will continue to be so for the next 3 years.

Work NCID has done to date:

made submissions to Productivity Commission Draft and Final Reports
consulted with members, including people with intellectual disability through Our Voice
developed Fact Sheets, available on www.ndis.ncid.org.au
supported Alliance forums
participated in AFDO discussions National Council on Intellectual Disability ! 3

Introduction ……………………………………………………………………………………………..6

National Disability Strategy ………………………………………………………………………..7

Intellectual Disability …………………………………………………………………………………9

Speciﬁc Comments on the Bill …………………………………………………………………..11

Section 3 - Objects of the Act ………………………………………………………………11

Section 4 - General Principles ………………………………………………………………11

Chapter 2 - Crisis/Emergency Funding …………………………………………………..11

Section 7 - Access to Documentation in Accessible Formats………………………11

Section 9 - Deﬁnitions …………………………………………………………………………11

Section 18 - Request to become a participant …………………………………………12

Section 21(3) - When a person does not meet the eligibility criteria …………..12

Section 24 - Disability Requirements……………………………………………………..12

Section 26 - Undergoing an access assessment ……………………………………….12

Section 29 - Person ceases to be a participant …………………………………………13

Section 30 (2) - Revocation of participant status ……………………………………..13

Section 31 - Principles relating to plans …………………………………………………13

Section 33 - Registered Providers ………………………………………………………….13

Section 34 - Reasonable and Necessary Support ……………………………………..13

Section 43 (5) - Choice for the participant in relation to plan management ..14

Sections 47 to 50 - Review of a person’s plan ………………………………………….14

Section 65 Protection of certain documents from production to court ……….14

Section 74 - Children…………………………………………………………………………..14

Part 5 - Nominees ……………………………………………………………………………….14

Section 91 - Suspension of Nominees …………………………………………………….16

Section 99 - Reviewable decisions …………………………………………………………16

Chapter 5 - Compensation Payments ……………………………………………………..16

Section 118 (e) - Functions of the Agency ………………………………………………16

National Council on Intellectual Disability ! 4

Section 120 - Charging of Fees ……………………………………………………………..16

Section 127 - Appointment of Board Members………………………………………..17

Section 174 (2) - Quarterly Report to the Ministerial Council ……………………17

Section 182 - Debts due to the Agency ………………………………………………….17

Section 188 (5) - Information relating to debts ……………………………………….17

National Council on Intellectual Disability ! 5

I like living in my own house. I live with my boyfriend and we get help from my parents and our friends and others but we can do what we like. I like going to work and to my church and to the football. Best of all I can cook for Tom and our friends, with some help from mum and my workers … (32), person with intellectual disability

It was a shock, I did not know how many people knew her. When she got sick, really very ill, people from the supermarket she works in, her friends, her neighbours, people from her church visited her in hospital and at home, they cooked meals, cleaned her house, did her shopping and made sure she had enough videos. It was amazing! She is part of her, or should I say, our community. I guess she has only got what she has given to others over the years. (age not disclosed), a very proud mum

Introduction

The NDIS is not merely a funding scheme providing support to people with disability, the NDIS must have a clear purpose and must deliver clear outcomes for people with disability. It must be an enabler.

The danger is an historical one: see a problem - throw money at it. It is unclear whether governments see people with disability as the problem, service providers as the problem or elements in the community (for example, employers) as the problem.

The language of the Bill and rhetoric associated with it sees the solution to the problem (whatever it is) as giving people (some) money and giving them (some) choice so that they can receive (some) support. Why? What real outcomes should people with intellectual disability expect from their involvement in the NDIS?

The answer lies with the National Disability Strategy which seeks to positively change the position of people with intellectual disability in Australian society.

The shared vision is for an inclusive Australian society that enables people with disability to fulﬁll their potential as (equal) citizens. National Disability Strategy, p 8

The National Disability Strategy and the changes it demands of all participants in our society demonstrates that money, choice and support will not produce citizenship for people with disability.

The NDIS is the important element of the National Disability Strategy as it enables people with disability to participate in the building of an ‘inclusive Australian society’, not merely to participate in a society owned and controlled by others.

It is interesting that the vision sees people with disability being enabled to ‘fulﬁll their potential as equal citizens’; citizenship is not divisible, and yet the National Disability Strategy sees people with disability as currently being unequal, lesser citizens. Citizenship is something that is given, it confers rights and responsibilities; it would be more accurate to say that people with disability have unequal participation in their citizenship.

If we take the National Disability Strategy as the key document and the NDIS as the enabler for people with disability to exercise their rights and responsibilities, the success or otherwise of the NDIS must be measured against the outcomes of the six areas of the National Disability Strategy. In ﬁve years time, how will the the NDIS have enabled people with intellectual disability, through

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exercising their rights and responsibilities, to shape Australian society to become, inclusive, accessible, equal, just, economically secure, educated and healthy?

This submission looks at the Bill from this point of view. It is not enough to say, does the Bill provide more money, does the Bill give people more choice, does the Bill give people more support. The question is, will the Bill enable people with disability equal participation in their rights and responsibilities of their citizenship? Or, will it be more of the same?

Key Issues for people with intellectual disability

Inclusion of all people with intellectual disability, including those with higher IQ scores
Respect for who people with intellectual disability are and their achievements
People with intellectual disability have control over their lives, not necessarily over ‘support’ funding
Self advocacy is important for people with intellectual disability and must be supported, including with resources
All service providers, both generic and speciﬁc, use evidence based practice (leading [best] practice)

National Disability Strategy

The National Disability Strategy covers the six principle areas of life for all Australian citizens and sets out an outcome for each area. Each outcome starts with “people with disability …”, but each outcome applies to all Australians. These are not outcomes only for people with disability, but also for their neighbours, their work mates, their friends and family. They are outcomes for all Australian citizens and they should be read as such. And, by working to achieve these outcomes, people with intellectual disability will be beneﬁting all members of their community not just themselves.

As we read each of the six areas, the challenge is to image how the NDIS will enable people with intellectual disability to be participants in achieving the outcome; not being done ‘for’ or ‘to’ them but being active citizens in making the outcomes the reality for all Australians.

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 Inclusive and accessible communities
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People with disability live in accessible and well-designed communities with opportunity for full inclusion in social, economic, sporting and cultural life.

Rights protection, justice and legislation

People with disability have their rights promoted, upheld and protected.

Economic Security People with disability and their families have economic security, enabling them to plan for the future and exercise control over their lives.

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Personal and community support
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People with disability and their families have access to a range of supports to assist them to live independently and actively in their communities.

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Learning and skills
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People with disability achieve their full potential through their participation in an inclusive high quality education system that is responsive to their needs. People with disability have opportunities to continue learning throughout their lives.

Health and wellbeing People with disability attain their highest health and wellbeing outcomes throughout their lives.

The success of the NDIS will be judged by these Outcomes:

✓Have all people with intellectual disability been engaged with their community in achieving these Outcomes? ✓How have people with intellectual disability funded by the NDIS been actively engaged (enabled) with their community in achieving these Outcomes? ✓How many people with intellectual disability, including those with higher IQ scores, have not received NDIS and been engaged with their community in achieving these Outcomes? How many have not been engaged? ✓In what ways has the funding of the Agency built the capacity of people with intellectual disability to be actively engaged with their community in achieving these Outcomes? ✓How has the Agency engaged with the community to achieve these Outcomes? The success of the NDIS is not a question of numbers, how many dollars provided, how many people funded, how many support hours. The success of the NDIS can only be judged by a real change in the lives of all people with intellectual disability a change where we can all proudly state:

In Australian society, all people with disability fulﬁll their potential as citizens.

National Council on Intellectual Disability ! 8

Intellectual Disability

All people with intellectual disability, including those with higher IQ scores (70 - 85) must be speciﬁcally included in the National Disability Insurance Scheme.

Intellectual disability is …

… a lifelong disability that can affect many different areas of a person’s life. Many factors can cause intellectual disability; however, in many cases, no identiﬁable cause is found. Some people with

intellectual disability may also have other  disabilities or conditions such as physical  disability,

psychosocial disability or a speech impairment.

A person with intellectual disability is able to learn. With appropriate support and training within a culture which values the inclusion and contribution of each individual, people with intellectual disability can develop the skills and conﬁdence to enable them to actively participate as equal members of the community.

Deﬁning intellectual disability

Intellectual disability is characterised by signiﬁcant limitations, which originate before age 18, in:

intellectual functioning; and‣ adaptive behaviour expressed in conceptual, social and practical skills.‣

Intellectual functioning

Intelligence is a general mental ability. It includes reasoning, planning, solving problems, thinking

abstractly, comprehending complex  ideas,  learning  quickly, and  learning  from  experience.

Intelligence reﬂects a capacity for understanding our surroundings - catching on, making sense of things, or ﬁguring out what to do.

What the Productivity Commission said …

The criteria for eligibility do not separately identify people with intellectual disabilities. They are‣ grouped with other people with ‘signiﬁcantly reduced functioning in self-management’. There is full coverage of intellectual disability. p 78.

In addition to the above requirements, people would have to meet at least one of the following‣ conditions. They would:

have signiﬁcantly reduced functioning in self-care, communication, mobility or self-management and require signiﬁcant ongoing support. For example, this would include people who need support in toileting, who require signiﬁcant support for mobility and/or communication or who require supports in self-management and planning to live successfully in the community (such as those with intellectual disabilities or those with signiﬁcant and enduring psychiatric disabilities). p 30.

While the above categories (severe and profound core activity limitation) can be useful, as can the‣ broader International Classiﬁcation of Functioning, the appropriate deﬁnition of disability should take account of the policy context in which government is applying it and of the practical ease of identifying disability. For example, under the ABS’s approach, many intellectual disabilities might not be categorised as severe or profound (reﬂecting the omission of learning as a ‘core activity limitation’). However, in the Commission’s view (chapter 3), there are strong grounds for a disability scheme to provide funded supports to people with an intellectual disability. p 111

A person receiving funded support from the NDIS would have a disability that is, or is likely to be,‣ permanent. The deﬁnition of ‘permanence’ would include people with long-term functional

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limitations who may only need episodic support. In addition, people would have to meet at least one of the following conditions. They would:

– have signiﬁcantly reduced functioning in self-care, communication, mobility or self-management and require signiﬁcant ongoing support (3a). For example, this would include people who need support in toileting, who require signiﬁcant support for mobility and/or communication or who require supports in self- management and planning to live successfully in the community (such as those with signiﬁcant and enduring psychiatric disabilities or those with intellectual disabilities) p 157.

Around 40 per cent of individuals with intellectual disability with life-long care and support needs‣ do not face a core-activity limitation (AIHW 2008a). Even so, their actual capacity to participate in society may be lower than those identiﬁed as having such limitations.

As noted by the AIHW:

“People with intellectual disability encounter special challenges that are different from people with other types of disabilities in a number of important aspects. For example, they have difﬁculty learning and applying knowledge and in decision making. They may have difﬁculty identifying and choosing options at key life transition points. They often have difﬁculty adjusting to changed circumstances and unfamiliar environments and therefore need high support during times of change.

Need for help with core activities may not fully reﬂect the level of support that an individual with intellectual disability requires to participate in society. Even though they may function relatively well in the familiar routines of self-care and domestic life, and be independently mobile … It is therefore important to also consider the level of support that is needed in non-core activity areas, especially making friendships, maintaining relationships and interacting with others. (2008a, pp. 1–2)” p. 171 172

A short upfront assessment module would establish whether an individual would beneﬁt from‣ funded support. In many cases, this stage would be waived for:

individuals who unambiguously experience signiﬁcant limitations in mobility, self care, communication or self-management, such as those with quadriplegia, or diagnosed as having intellectual disability p. 177.

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Speciﬁc Comments on the Bill

Section 3 - Objects of the Act

An Object needs to be added which requires the Agency to be proactive in making people with disability aware of the NDIS. People with disability should not be ‘denied’ access to the NDIS because they are unaware that they may be eligible and would beneﬁt from being a participant.

Section 4 - General Principles

(7) People with intellectual disability must have access to independent advocacy whenever they request or need it, for example, to access the NDIS and obtain the support they need. This may require the Agency to fund independent advocacy where it is not available.

(14) While NCID supports ‘innovation, quality and best practice’, how will these be determined? These must be tied to research and the evidence base that research will provide and implemented, not left to some vague notion of choice.

Chapter 2 - Crisis/Emergency Funding

There must be provision for the Agency to provide funding to people with intellectual disability who are in crisis or an emergency, and who are not yet participants. It should not be necessary for a plan to be completed before a person receives the emergency support they need. This is applicable to people with intellectual disability who are ‘manifestly’ eligible for the NDIS.

Section 7 - Access to Documentation in Accessible Formats

While the intention is good, it is not a matter of providing information to a person ‘which that person is most likely to understand’ − it is about proving all information to people in an accessible format that they can independently use. This applies to all communication and documentation clauses.

Section 9 - Deﬁnitions

Disability: a deﬁnition of disability must be added to the list of deﬁnitions, the most appropriate one is that given in the UN Convention on the Rights of Persons with Disabilities, Article 1:

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.

That the draft Bill does not have a deﬁnition of disability is an example of ‘seeing the problem as the person with disability’. As the National Disability Strategy makes clear, it is the ‘barriers’ that need to be addressed if people with intellectual disability are to have full citizen rights. The deﬁnition is important as it reinforces this central concept of the National Disability Strategy.

Developmental Delay: the word intellectual should be substituted for ‘mental’ or added.

Advocacy: advocacy is important for people with intellectual disability. The Bill must include a deﬁnition that deﬁnes advocacy as independent of the Agency and service providers, and acknowledge that without advocacy people with disability will be at risk of abuse and discrimination.

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Economic and Social life: given that these are two key concepts in the Bill, deﬁnitions should be provided to ensure that the Agency and participants talk about the ‘same thing’.

Impairment, Disability and Function: the Bill must be checked to ensure that these are used consistently throughout the document. They aren’t. Each has a speciﬁc meaning and should be used to convey the correct meaning. The deﬁnitions and meaning should be taken from the International Classiﬁcation of Functioning, Disability and Health (WHO).

Section 18 - Request to become a participant

A request to become a participant may also need to be made by a person close to the person with intellectual disability, for example, family members, advocacy organisation or service provider. The later is important as homeless organisations, drug and alcohol organisations and legal aid organisations will frequently come into contact with people with intellectual disability who have higher IQ scores.

Section 21(3) - When a person does not meet the eligibility criteria

This section must be changed to, ‘if the CEO does nothing within 14 or 21 days the person meets the access criteria’. To leave people with disability without any response is outrageous, hoping that inaction by the CEO will automatically generate a letter to the person saying they do not meet the criteria is a faith that can only be held by a bureaucrat!

Section 24 - Disability Requirements

(d) Change to “… the environment (including attitudes) affect the person’s capacity for social and economic participation; …”

Clause (c) addresses the issue of impairment and the effect that this may have on a person with intellectual disability’s functioning. What is made clear by the National Disability Strategy is that a person’s social and economic participation is affected by their environment, including attitudes and poor (non-evidence based) support. For example, a person living in a fully universally accessible community will need little NDIS support.

The NDIS Bill must not be totally focused on the person with impairment as ‘the problem’. These are not ‘impairment requirements’, but “disability requirements” and as such directly involve the community. As the National Disability Strategy clearly shows us, people with intellectual disability are disabled by the inaccessible communities in which they live. It is important to acknowledge this in a Bill which asks all citizens (including those living with disability) to contribute to an insurance scheme.

Section 26 - Undergoing an access assessment

Where a person has an existing assessment that they have a permanent impairment, this is sufﬁcient as ‘proof’ of eligibility; for example, for people with intellectual disability, an IQ score of < 70 or, for people with intellectual disability with higher IQ scores (70 - 85), an adaptive behaviour score 2

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standard deviations below the average. Intellectual impairment is a lifelong disability, therefore re assessment is not warranted.

All costs associated with a request by the Agency must be met by the Agency, including support, travel, etc.

The participant timeframes are too tight with the consequence being ineligibility; therefore they need to be extended to 90 days. Consideration has to be given to availability of specialist assessors, travel that may be required and personal circumstances of people, for example, many people with intellectual disability are reluctant to take time off work as they consider this may place their employment in jeopardy.

Section 29 - Person ceases to be a participant

This clause must make provision for a ‘cooling off’ period

Section 30 (2) - Revocation of participant status

The letter to the participant must state the reasons why their status has been revoked and their rights to seek a review and appeal. The correspondence must be in a format that the person can independently understand.

Section 31 - Principles relating to plans

In the introduction, delete “as far as practical”.

(k) Replace “disability service(s)” with ‘support(s)’ as not all support that a person receives will be with disability providers.

Section 33 - Registered Providers

The complexity of the registration process for a provider should be compared with the risk posed by the service to the other human rights of the individual. This clause should not operate in a way which unnecessarily limits a person’s choices about who delivers services. The process should also be open and accessible for people with disability to apply as an individual provider.

Section 34 - Reasonable and Necessary Support

This section demonstrates a lack of understanding of (intellectual) disability and demonstrates why the Bill needs to reworked to match the contemporary conceptualisation of disability. For example, (f)(i) refers to ‘universal service obligations’, and that these should/must not be funded by the NDIS. But what if the person with an impairment is disabled though lack of access to health, through inappropriate (poor) employment support, through services which segregate the person from their peers? NDIS funding to meet the person’s need for good health, for a good job, to have services in and with their community enables the person with disability to be a participant, an enabler, in achieving the outcomes of the National Disability Strategy.

People with intellectual impairment are disabled because the community does not meet its responsibilities to them. The failure of this Bill to understand the nature of disability will mean that discrimination will continue and the lives of people with intellectual disability will not change.

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Another example is (e), ‘what is reasonable to expect of families, informal networks and the community to provide’. This is not a matter for the NDIS, or governments, it is about relationships that all citizens have with each other. By making it an NDIS matter devalues the relationships that a person with intellectual disability has by reducing them all to ones of ‘care’. It demonstrates that the Bill is not about ensuring the rights and entitlements of people with disability but a continuation of the charity model of support where a person has to extinguish all of their resources before you get support.

This relates to concerns that people with intellectual disability (and families) have − that in the future the NDIS will require co-payments and/or be means tested.

(c) The concept of “value for money” can be abused and turned into the lowest cost. As long as the person is achieving their personal goals in the framework of the Principles of this Bill, then it should be assumed that “value of money” is being achieved.

(d) See comments on 14 (4)

Section 43 (5) - Choice for the participant in relation to plan management

Delete ‘so far as reasonably practicable’ and include a requirement that the CEO must provide reasons to the participants if the wishes of the participants are not to be followed.

Sections 47 to 50 - Review of a person’s plan

All reviews must be with the participants.

A person’s circumstances will change frequently and where this has a consequence on their plan/ funding the process for ‘accounting’ for this change must not be become burdened by red tape. The process must allow for quick and simple adjustments. This should be the norm.

Section 65 Protection of certain documents from production to court

The reason for this section is unclear. There is an obligation on ofﬁcers of the Agency to act in the interests of people with intellectual disability. The production of material to achieve this aim must be allowed, eg, in instances where there is documentary evidence of abuse.

Section 74 - Children

There are concerns as to how this section will be implemented in relation to:

children with intellectual disability leaving care, the CEO must nominate a person who is ‘sustainable’ over the long term
parents with intellectual disability in relation to 74 (1) (b), and,
indigenous children, the CEO must nominate a person who is culturally appropriate. Part 5 - Nominees

This Part is substantially based on work undertaken by NSW CID and AFDO, both to which NCID was a party.

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The nominee system rules must take into account that many people with intellectual disability will not have any family member or informal supporter who is willing and able to act as a nominee.

The plan nominee position is currently about averting risk. This is both subjective and counter to human rights requirements. Instead, plan nominees should fulﬁll a capacity building role, which is about developing decision-making capacity with a person with disability and giving them opportunity to have control over their own lives through practical experience with decision making.

A nominee may only be appointed under very strict conditions. There should be a very clear process for demonstrating that a person with disability has been given all other options for support to make their own choices and manage their own plan before a plan nominee can be appointed.
Another criteria for appointing a plan nominee could be a situation where there is evidence of abuse and/or neglect of the person by someone in their life.
If a guardian has been appointed with authority to make decisions about services, then that person should automatically be recognised as nominee. Similarly, if there is a nominee and a different person is appointed as guardian, the guardian should automatically take over as nominee.
The agency should be required to be satisﬁed that the person appointed as nominee is willing and able to comply with section 80 and section 5.

To make sure plan nominees are held accountable and are not used widely, the NDIS Bill should require that:

There are clear criteria for who can be appointed as a plan nominee, including that service providers should not be nominees;
There are clear criteria for why a plan nominee can be appointed, including that this should not be because the person ‘poses a risk’;
There are clear criteria for how a plan nominee can be appointed, including the need to ensure that a person with disability is not forced to pay for assessments which lead to the appointment of an involuntary nominee;
Plan nominees are given standard education and training (especially on how to build capacity);
Plan nominees are reviewed regularly (once every twelve months);
There should be a clear plan for building the capacity of the participant while a plan nominee is in place;
The NDIA should provide a publicly available report on nominee use every year;
The NDIA should be compelled to build the capacity of capacity-building organisations (such as self-advocacy groups).
There needs to be a general capacity for the agency to reconsider the need for a nominee and who the nominee should be on request from the person with disability or another concerned person or the agency’s own initiative.

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Some points about correspondence nominees:

Plan nominees and correspondence nominees should be obliged to work together and communicate with each other where necessary;
Correspondence nominees should be obliged to let their participant know about all NDIS correspondence.

Section 91 - Suspension of Nominees

Agency may suspend nominee where there are “reasonable grounds to believe” that the nominee is likely to cause “severe” harm to the person.

This is too high an onus of proof given the vulnerability of many people with intellectual disability and the impediments to them speaking out about abuse.

The word “believe” should be replaced by the word “suspect”.

The word “severe” should be deleted. Again, the wording of this section is ‘strange’, why is ‘mild’ and ‘moderate’ harm OK? Why is only “severe” harm to be acted on? This is similar as saying that ‘mild’ and ‘moderate’ abuse of people with intellectual disability is OK!

The wording of this section, again, demonstrates that there is a lack of understanding of disability and the rights and responsibilities of citizenship.

Section 99 - Reviewable decisions

All decisions must be reviewable − the introduction must state “including but not limited to”.

Chapter 5 - Compensation Payments

NCID does not support the CEO requiring people to claim compensation. For families living with intellectual disability, this is most likely to be instances of medical negligence associated with the birth of the person with disability.

This is a personal choice which has many consequences, not only ﬁnancial, but on relationships, family structures, etc. Placing families and/or individuals in a position where they have to make a claim for compensation before they can receive NDIS funding is unconscionable.

Section 118 (e) - Functions of the Agency

The Agency must report on quality and outcomes, not only funding, and all reporting must clearly identify people with intellectual disability. All information and analysis must be made public.

Section 120 - Charging of Fees

This section must be deleted. What is the point of providing funding to people only to take some of it back as fees?

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The charging of fees, co-payments and means testing misses the point of the National Disability Strategy. Why does a person have to pay to be a citizen, over and about the requirements of all citizens?

Section 127 - Appointment of Board Members

All policy and practice must be coherent with the Principles set out in the Bill; for example, if people with disability are to be seen to be competent, if people with disability are to be at the centre and in control, then the Board of the NDIS and all committees and advisory groups must also only have people with disability on them - what would be the case for indigenous groups or women’s groups? The only reason that this will not happen is that people with disability (especially people with intellectual disability) are seen as less than − less than competent, less than equal.

Section 172 (2) (c) - Annual Report

The Annual Report must be made public within 30 days of it being received by the Ministerial Council.

In reporting, the Board must include the statistics on the number of people with intellectual disability who are participants, levels of funding, support funded, number who were deemed not to be eligible − with a breakdown by State, gender, ethnicity and age.

Section 174 (2) - Quarterly Report to the Ministerial Council

The Quarterly report to the Ministerial Council must be made public within 30 days of it being received by the Ministerial Council.

The Quarterly Report must include the statistics on the number of people with intellectual disability who are participants, levels of funding, support funded, number who were deemed not to be eligible − with a breakdown by State, gender, ethnicity, and age.

Section 182 - Debts due to the Agency

Safeguards are needed for unintended breaches of Agency rules which may lead to a debt. There must be a clear statement which clariﬁes, where the breach was unintended, caused by lack of information, or a misunderstanding, etc, that the debt will be waived.

Section 188 (5) - Information relating to debts

Where a person with intellectual disability is required to attend a meeting with the Agency in relation to a debt, the person must have an independent advocate with them.

I get help with the things that I ﬁnd hard. It is different than before, I get to choose the people who help me with my money, my holidays and making sure I get to work. They also help me do new things …

is part of a pilot run by the State government. We spend a lot of time having cups of tea with people she has known for awhile, talking about what she does, what her

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friends do, what we do. She lets us know if she wants things to change and if she wants to try new things. All this will change for a while as she has told us all that she and are getting married. I do wonder how many cups of tea it takes to organise a wedding?

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