DOCUMENT 13
Minutes of Intellectual Disability Reference Group (IDRG)
Meeting 15-17 August 2023 Pullman Adelaide, South Australia
IDRG members at the meeting Ms Leah Van Poppel, Principal Member and Ms Judy Huett IDRG Co-Chair Ms Catherine McAlpine Ms Sam Paior Ms Sarah Sutton Mr Gavin Burner Mr Justen Thomas Ms Paige Armstrong Ms Angela Yee Ms Brooke Canham Professor Sally Robinson Mr Angus Graham OAM Mr Leighton Jay Ms Judy Harper
NDIA staff at the meeting
Ms Rebecca Falkingham, NDIA Chief Executive Officer (CEO)
Ms Corri McKenzie, NDIA Deputy CEO of Strategy and Service Improvement
Ms Kathy redacted: s47F - personal privacy Director Strategic Advice, Policy, Advice and Research
Ms Jaklin redacted: s47F - personal priva a/g Divisional Support Officer, Policy, Advice and Research Division
Ms redacted: s47F - personal privacy, Assistant Director Communications, Independent Advisory Council Secretariat
Ms Karyn redacted: s47F - personal privacy Project Officer, Independent Advisory Council Secretariat
NDIA Observers (on line)
Mr Daniel redacted: s47F - personal privacy Strategic Advisor, Policy, Advice and Research
Ms Louise redacted: s47F - person a/g Senior Project Officer, Independent Advisory Council Secretariat
Ms Matilda redacted: s47F - personal priva Communications Officer, Independent Advisory Council Secretariat
People also at the meeting
redacted: s47F - personal privacy Support
redacted: s47F - personal privacy Support
redacted: s47F - personal privacy Support
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People who could not come to the meeting
Ms Leonie McLean
Words we use
Reference Group: is a group of people who know a lot about something. This group knows a lot about intellectual disability. Reference Groups work together to make a plan or find ways to make something happen. Co-design is when the Agency will work together with people with disability and the broader disability sector to design policy. Conflict of Interest: Conflict of Interest Declaration is a document where you need to say all the different ways you are connected to the NDIS. This could include if:
o your work is around the NDIS
o you are an NDIS participant
o you are part of other reference groups that talk about the NDIS This is because we all need to make sure your job in this Reference Group doesn’t clash with other jobs you do. It is ok to have a conflict of interest, but you need to let the Secretariat know. Action list: A list of things we need to do. In every meeting we make sure the list has all the things we still need to do on it and nothing we have finished working on. Participants: these are the people that the NDIS helps. Co-Chair or Co-Chairs: the Chair of a meeting is the person who leads the meeting. In the IDRG, we have two people who lead the meeting, so we call them Co-Chairs. Principal Member: is the Chair of the Independent Advisory Council (Council), and one of the Co-Chairs of the IDRG. Work Plan: is a document that says what the Reference Group will do in the next year, or two years. Secretariat: the team that organises the meetings, sends papers and pays members for attending. Priorities: things that are important to us, and to people with disability, and that we want to make better Restrictive Practices: This is when something is put in place for a participant that reduces a participant’s freedom, or their ability to do something that they would normally be able to do. An example of a restrictive practice might be a locked cupboard in the kitchen. Reasonable and necessary: These are supports the NDIS pays for in a participant’s plan. The NDIS pays for supports that are reasonable and necessary. They help you work towards your goals, be more independent and take part in the community.
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Session One — Pink
1.1 Co-Chairs’ Welcome and Open The Principal Member and Co-chair, Ms Leah Van Poppel (Leah) opened the meeting at 10:30am.
Leah acknowledged the Traditional Owners of the lands where the IDRG met. Mr Justen Thomas also acknowledged the Kaurna people as Traditional Owners of the lands now known as Adelaide.
Leah welcomed new and returning members to the meeting. She said that the voices of people with intellectual disability are the most important. IDRG will support them to be heard.
The IAC Secretariat gave everyone Easy Read documents for this meeting. Members said that:
e The videos given to us at the last meeting were good, but we need information in Easy Read
e Weneed the Easy Read documents a week before the meeting, so we have enough time to read them.
Leah gave Members an outline of the meeting. She said to let the Secretariat know of any feedback.
Leah told members that Ms Rebeca Falkingham (Rebecca) and Ms Corri McKenzie (Corri) from the NDIA are at the meeting. They will listen to the important things members have to say. They will tell members what the NDIA is doing about the things they raise.
All of the members and the IAC Secretariat staff introduced themselves.
Session Two — Purple
2.1Minutes, Actions and Conflict of Interest Declarations
Leah explained the Conflict of Interest Declarations and Actions list. Members:
e approved the minutes from the last meeting e noted the actions list
e had the opportunity to report any conflicts of interest.
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Session Three — Orange
3.1 What you’ve heard in your community (including small group discussions) Members said that:
NDIS access and planning
e NDIS plans in should be offered in Easy Read so people with intellectual disability can understand their plans.
e There should be less planning meetings over the phone.
e Some adults with Foetal Alcohol Spectrum Disorder (FASD) can’t get a diagnosis for FASD. This means they can’t always get the NDIS and supports they need.
e Some behaviour support practitioners create behaviour support plans without spending much time with the person the plan is for.
e There needs to be a plan how the NDIA Supported Decision-Making Policy will work in real life. People with intellectual disability should be part of this work.
NDIS service and supports
e The NDIS needs to understand that people with speech and language disorders need speech pathology for a long time.
e Some NDIS participants are told they can’t spend their flexible funding on other therapies.
e People with intellectual disability are often vulnerable to scams and need more support to understand technology linked to their services and supports.
e People with disability who are very sick need their NDIS supports. Their NDIS supports help make the end of their life more comfortable.
e The Justice Liaison Officers (JLO) are doing a really good job. The NDIA should think about participants who lose JLO supports when they leave the justice system.
e It would be good if there are planners with special training in things like home and living.
e The NDIS has changed some rules about employment supports. Some people are not getting employment supports in their plans.
e People in the Northern Territory have a hard time finding a provider.
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Some plan managers are telling people can’t buy things, Plan managers can’t make reasonable and necessary decisions.
Participants who have restrictive practices should be involved in decisions and they must agree to the restrictive practice.
NDIS home and living supports
Reports that some home and living providers in Queensland, who also offer other services/supports, pressure participants to get all their NDIS supports from them.
The NDIA should look at apartments as part of home and living supports.
Houses for people with disability should have good facilities nearby, like shops and gardens. There should be more information on what ‘shared supports’ means for people with intellectual disability, autism and psychosocial disability living in group homes.
Reports some planners ask people with intellectual disability leading questions about their home and living supports to nudge them towards choosing supported independent living (SIL).
The NDIS recently helped some people move out of a long stay health facility in Queensland. This was really good. Now these people live in a more suitable place.
Other services that work alongside the NDIS
There should be a more accessible and Easy Read option for reporting fraud on the NDIS Quality and Safeguards Commission’s website.
Public transport and airports need to be more accessible for people with intellectual disability. Services outside the NDIS might refer people with disability to the NDIS because they don’t know what other services outside of NDIA do. For example, family violence workers referring children with disability to the NDIS even though they need family violence support.
People with disability leaving the justice system are often vulnerable to exploitation and they seem to have an overuse of restrictive practices.
Some people can’t get back into their houses after the flood in NSW. This is causing them a lot of stress.
3.2 Rebecca responded to what members said
Participants, the NDIS, and their aging parents should be able to plan what supports they need to be more independent before their parents are no longer able to provide as much support.
We will be co-designing an implementation plan for the supported decision-making policy.
The same Local Area Coordinator (LAC) should guide a person with disability on their journey. The NDIS Review are looking at why this often doesn’t happen.
We will have specialist planners in the future. They could be for certain disabilities or a topic like home and living supports. We are also looking at having employment specialist planners.
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e The NDIA is looking at how it can make it hard to do the wrong thing. This includes fraud and unethical practices.
e Supported decision making — the NDIS need to think about how we will put the policy into practice.
e The Agency is committed to increasing the number of first nations staff members including at leadership level. We want to listen to and think about first nations people when we make decisions.
e The NDIA is thinking about how we can do a better job of supporting people with Foetal Alcohol Spectrum Disorder.
e The NDIA is looking at how we can do a good job of supporting participants who are in prison or are coming out of prison.
e The planners at the NDIA should know where a person can get support, if it can’t be funded by the NDIS.
e We need to understand and partner with organisations people trust, like First Nations organisations.
e Emergency management frameworks currently do not have any disability practice.
e There is a shortage of behaviour support practitioners.
e We should always ask participants how they want to talk to us instead of assuming we know.
e The NDIA should make plans in Easy Read.
e The NDIA should work more closely with other services to make sure that participants who are very sick or dying get the supports they need, and their disability supports can continue.
Session Four — Dark Blue
4.2 News on employment of people with disability at the NDIA
Rebecca told the Reference Group about how the NDIA are working to hire more people with disability. The NDIA is also looking at how it can become a better work place for people with disability, and how it can support people to gave a good experience when they apply for a job at the NDIA.
4.2 What good employment looks like for people with intellectual disability
The Reference Group told us about things which help people with intellectual disability have a good work experience and outcomes.
Things that help people with intellectual disability get good work:
e Employers who value people with disability and will build the job around the person’s skills. e Job interviews should be led by people with intellectual disability who ask questions which are easier to understand.
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Information about the job and/or interview in Easy Read.
Support to make choices that suit them and help with their career, not business goals. Paying a fair wage.
Help them understand what employment might mean for the disability support pension.
Things which help people with intellectual disability do good work:
Regular (weekly) individual or team check ins.
Having a workplan for each day.
Accessible online working and being able to work part time if they want.
A word list explaining big words is useful, but it is better if people use words that everyone can understand.
Accessible human resources processes like Easy Read timesheets and leave forms. Understanding, valuing, and including people with intellectual disability, for example at team lunches.
Mentors who know the job well and make the person with intellectual disability feel safe to ask for help.
Stable work and jobs that hire people with intellectual disability for a long time and have a career pathway.
Using performance reviews to plan their goals and gives required training.
Day 2 Session Five — Green
5.1 South Australian Council on Intellectual Disability (SACID) presentation
SACID gave a presentation on what helps people with intellectual disability get work and be supported to work. Members said that:
People with intellectual disability should enjoy their work, whether they are self-employed or part of a team.
What is happening in someone’s home life can make it harder for them to work.
People with intellectual disability might look for and find jobs in different places, like Facebook. The workplace needs to be designed or redesigned to support people with intellectual disability. Running the organisation with a trauma informed model is important for keeping staff safe. Employees with intellectual disability need support based on their strengths and individual needs. A fair wage gives someone with intellectual disability more choice and freedom.
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Session Six — Red
6.1-6.3 Making our work plan
The Reference Group started planning what they would do over the next 18 months. Leah talked about some of the things that the IDRG has worked on in recently. For example behaviour support. The IDRG had an idea for advice that is going to go to Council.
Some of the big topics that the groups talked about were employment, planning and justice.
Some of the things they thought about were:
The work the NDIA is already doing that relates to intellectual disability.
What intellectual disability advocacy groups like Inclusion Australia are working on.
What recommendations might come from the NDIS Review and the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
What work the Reference Group and IAC have already done.
Focusing on problems that impact people with intellectual disability more than people with other disabilities.
Thinking about different groups of people when we suggest something. For example, we should ask if this will work for participants in rural or remote areas, or First Nations participants. Employers need to be taught how to support employees with intellectual disability. The disability industry should be leaders in this and an example of how to employ people with disability. People with intellectual disability need to understand and have a say in their supports, particularly in restrictive practices and guardianship orders.
There is still some more thinking to do on the Workplan but members said:
We want to keep working with the NDIA to employ more people with disabilities especially intellectual disabilities.
We want to do some more thinking about:
governments and services working together to support people with intellectual disability across all parts of their life.
People with intellectual disability in the justice system. Both as victims of crimes and people accused of them.
Preparing and inspiring people with intellectual disability to get real jobs and careers from age 15.
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Things we need to do
Leah and the NDIA will update the Reference Group on how the NDIA has been using the IAC’s advice on supporting parents with disability.
The IDRG will check the intellectual disability engagement guidelines and think about how other IAC Reference Groups could use them.
Session Seven — Brown
7.1 End of the meeting Leah thanked the group:
e for attending the meeting for a long time e giving valuable feedback and insights.
Leah closed the meeting at 2:30pm Thursday 17 August 2023.
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