Council for

Intellectual Disability

Submission from the Council for

Intellectual Disability on the NDIS (Getting the NDIS back on track) Bill Part 1 2024

May 2024

Contact: Rochelle Porteous Advocacy Manager www.cid.org.au

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• Content

1. Introduction………………………………………………………………………3

2. Key Concerns about the Bill Part 1……………………………………………4

3. Recommendations List…………………………………………………………9

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Introduction:

NSW Council for Intellectual Disability (CID) is a systemic advocacy organisation that works to ensure all people with intellectual disability are valued members of the community.

For over 65 years, NSWCID has been the peak advocacy group in NSW for people with intellectual disability. We have a diverse membership of people with intellectual disability, family members, advocates, professionals and advocacy and service provider organisations. Our Board must have a majority of people with intellectual disability and we actively involve people with an intellectual disability in all aspects of our work.

We have consulted with our advocacy group, a group of our members with intellectual disability who meet regularly to develop and inform advocacy and campaign for the rights of people with intellectual disability. We have also held two focus groups with our wider membership with intellectual disability. All the members with intellectual disability consulted are participants of the NDIS. Some of their comments are included in this submission. We have also drawn on CID’s professional experience as a disability advocacy organisation protecting and advocating for the rights of people with intellectual disability.

Key Concerns with Bill Part 1:

1. There has been no Co-Design prior to this legislation being introduced:

It is concerning that this Bill has progressed in parliament without any genuine co- design being undertaken with people with disability. While we are aware that some disability advocates did see the Bill before its introduction, they were subject to non- disclosure agreements, meaning they were not able to share information with the wider disability community. The government says that co-design will take place over an 18 month period. We say that the Bill should not progress any further without meaningful co-design work on what changes are being proposed. The Australian Government is required under International human rights law to consult with people with disability and their representatives on matters with direct relevance to them.

Comments from CID members:

“They should let the participants know what is going on. We don’t know what is going on.”\n “They should give information in Easy Read about what is going on.”\n “Co-design is so important”

“People with intellectual disability need to be part of the process of making changes to the NDIS”

Recommendation 1: The Bill should not proceed further without meaningful co-

design work on what changes are being proposed.

Recommendation 2: All information relating to proposed changes to the NDIS

should be made available in Easy Read.

Recommendation 3: People with intellectual disability should be able to fully

engage in the co-design of all changes being proposed in the Bill.

Recommendation 4: We need to legislate co-design into the making of the

legislative instrument.

2. Increased Powers of the NDIA CEO to require information from participants:

The NDIA CEO has been invested with enhanced powers to be able to request information from participants with deadlines to produce this information. The CEO has also being given the right to revoke the status of a participant and remove them from the NDIS if the timeframe for the delivery of required information is not adhered to.

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The request can also be very specific, for example the CEO can request a medical examination at a place of their choice. It is at the discretion of the CEO whether participants are allowed an extension of time or not and if deadlines are not adhered to this could result in the participant being removed from the NDIS. The CEO can ask for this information at any time and can also ask for the participant to be reassessed.

Many of our members with intellectual disability are frightened about these powers as they report how difficult it sometimes is to understand what the NDIS wants from them and then it is difficult to find the health specialist to provide the report and to do it in the timeframe imposed.

Costs of “needs assessments” is also a key issue for our members. If the NDIA CEO requires more assessments/documents, who pays for them? These reports can be cost-prohibitive if they are not covered by the NDIS. In NSW there are no public/free options for mental health reports, and the only option is cheaper assessments conducted at University Psychology training clinics by psychology students however these cost as well. There are also often huge waiting lists for these clinics and for other allied health professionals to provide assessments and reports.

There needs to be greater oversight on these powers with the option to request a review of the timeline deadline and the information requested. There also needs to be transparency regarding why additional information is required and costs need to be covered by the NDIS.

Comments from CID members:

• We can’t be endlessly proving our disability.
  • Our disability doesn’t disappear.
    • It’s like having to reapply all the time.
  • How would they like it if we asked them many questions and got them to fill in forms and get reports about their bodies and their disability?
    • It will be hard to get records that go back to 1965 as my disability was diagnosed at birth.
      • Every 7 years clinics can destroy those records for privacy reasons.
        • I had a recent IQ test done in 2021 to confirm my intellectual disability.
          • I need to have one of these every so often because the records get destroyed or lost.
            • I keep copies of all of my tests and documentation at home but it is a lot of work to keep these records.
              • Support coordination often need a month’s notice to get all this information.
                • Some use the freedom of information act to get this information which can take a long time.

Recommendation 5: Where the NDIA CEO requires information or reports from a participant within a defined deadline the reasons for this must be made clear to the participant.

Recommendation 6: All requests for information and reports must be made available in Easy Read.

Recommendation 7

The CEO should consider all reasonable requests for extensions of time to produce information/reports. Where there is no agreement on an extension of time and the participant’s ongoing participation in the NDIS Plan is at risk there must be an independent review process afforded to the participant.

Recommendation 8

The cost of assessments and reassessments should fully covered by the NDS.

3. Challenging decisions about plans and needs assessments:

Where a participant is not happy with their plan the new legislation will still give them the right to seek a review of the plan in terms of the statement of participant supports and the budget. However, underpinning the plan is the “needs assessment” which largely determines what goes into the plan.

Very important then, is the fact that the “needs assessment” is not a “reviewable decision” under section 99 of the NDIS Act. Not only is it not “reviewable decision”, when the “needs assessment” is finalised, there is no requirement to provide it to the participant under this new legislation even though this was a specific recommendation in the NDIS Review.

In addition, the Bill does not provide a way for a participant to challenge an inappropriate needs assessment. As the needs assessment is the key information used to develop the participant’s plan, the outcome of an inadequate needs assessment will most likely be an inadequate plan and budget.

The Bill provides for “replacement assessments” but it does not say if the participant will be able to request one. If a participant does request a “replacement assessment” and their request is refused, there is no appeals processes and therefore no way for the participant to challenge the decision.

CID members report frequently need to amend their plans and obtain additional information and reports to back up their requests for more supports and larger budgets. The Participant’s potential loss of control of the review process and the development of their “needs assessment” is therefore extremely concerning to them.

Legislation should be included in the Bill which requires “needs assessments” to be provided to participants prior to being provided to the CEO. In addition, participants should be provided with the option of doing a “replacement assessment” to address the problem of an inaccurate and thus unsuitable initial needs assessments.

Recommendation 9

Legislation in the Bill should require that “needs assessments” are provided to participants prior to being provided to the CEO.

Recommendation 10

“Needs assessments” should be provided to all participants with intellectual disability in Easy Read.

Recommendation 11

Legislation in the Bill should allow for participants to request a replacement assessment where they feel the original needs assessment is inappropriate.

Definitions on what constitutes NDIS Supports:

Under the current NDIA Act all supports can be funded if they meet the “reasonable and necessary” criteria. Clause 10 in the new Bill appears to have a goal of narrowing down the types of supports that will be funded under the NDIS. This may result in reduced “choice and control” for people with disability and undermine their ability to receive supports that meet their individual needs.

Only 8 categories of supports are listed (subclause 10(a)(i – viii). There is nothing in the list of supports regarding employment nor support for economic participation. Furthermore Mobility supports are nominated twice in the list of eight types of support to be funded but, critically important for people with intellectual disability, communication supports are not nominated in the list of eligible supports.

Augmentative and alternative communication (AAC) supports for example, are used by a lot of people with intellectual disability and people with non-verbal/complex communication. These include communication boards and communication devices such as text/picture-to-speech devices.

The reason that communication and supports enabling economic participation need to be separately listed as supports under the NDIS is that while you could argue they can be captured in:

• “>(i) is necessary to support the person to live and be included in the community, and to prevent isolation or segregation of the person from the community.”
  

AAC supports are nevertheless not specifically listed (unlike mobility supports) and when plans are developed the interpretation of this list of supports may have many variations in interpretation. The only way to ensure an AAC support will be funded by the NDIS is to provide it with the same status as a mobility support. The Bill should therefore be amended to make it explicit that communication supports and supports to economic participation are included as eligible NDIS supports.

Recommendation 12: The Bill should be amended to make it explicit that communication supports and supports to economic participation are included as eligible NDIS supports.

“Choice and control” needs more protection in the Bill:

“Choice and control” are very important principles for CID members and to all people with disability. Empowerment and agency come from “choice and control”. More protections are needed in the new Bill to ensure “choice and control” cannot be overridden and that it drives the purpose of the Bill.

Recommendation 13: The new Bill should be reviewed to ensure that: “Choice and control” is fully protected and that it is front and centre in all elements of the Bill.

6. Requirement to consult on development of detail in the NDIS:

Details in this new Bill are currently lacking. We are advised that more of the information relating to the development of NDIS rules will come later by legislative instrument which will be tabled by the Minister in the Senate.

CID members want to be fully consulted on development of the NDIS rules – whether these are changes to the rules or new rules, however while the legislation notes that the Minister should consult before making a legislative instrument, the Minister is not required to consult, and the legislative instrument will be enforceable even if the Minister does not consult.

The Government has signalled its commitment to developing the legislative instrument following “genuine consultation with the disability community.” This commitment therefore needs to be reflected in the NDIS Act.

Recommendation 14: Legislation should be amended to require the Minister to engage in genuine consultation with the disability community in the development of the legislative instrument.

List of Recommendations:

• Recommendation 1: The Bill should not proceed further without meaningful co- design work on what changes are being proposed.

• Recommendation 2: All information relating proposed changes to the NDIS should be made available in Easy Read.

• Recommendation 3: People with intellectual disability should be able to fully engage in the co-design of all changes being proposed in the Bill.

• Recommendation 4: We need to legislate co-design into the making of the legislative instrument.

• Recommendation 5: Where the NDIA CEO requires information or reports from a participant within a defined deadline the reasons for this must be made clear to the participant.

• Recommendation 6: All requests for information and reports must be made available in Easy Read.

• Recommendation 7: The CEO should consider all reasonable requests for extensions of time to produce information/reports. Where there is no agreement on an extension of time and the participant’s ongoing participation in the NDIS Plan is at risk there must be an independent review process afforded to the participant.

• Recommendation 8: The cost of assessments and reassessments should fully covered by the NDIS.

• Recommendation 9: Legislation in the Bill should require that “needs assessments” are provided to participants prior to being provided to the CEO.

• Recommendation 10: “Needs assessments” should be provided to all participants with intellectual disability in Easy Read.

• Recommendation 11: Legislation in the Bill should allow for participants to request a replacement assessment where they feel the original needs assessment is inappropriate.

• Recommendation 12: The Bill should be amended to make it explicit that communication supports and supports to economic participation are included as eligible NDIS supports.

• Recommendation 13: The new Bill should be reviewed to ensure that “Choice and control” is fully protected and that it is front and centre in all elements of the Bill.

• Recommendation 14: Legislation should be amended to require the Minister to genuine consultation with the disability community in the development of the legislative instrument.

END

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