Tell us what you think about employment for people with an intellectual disability

We are writing a report to the Disability Royal Commission and the Australian Government about employment for people with an intellectual disability.

This report is called a submission.

We want to tell them what needs to change so more people can get jobs they like and be paid properly.

The voices and expertise of people with an intellectual disability and their families are really important to this work.

We want you to tell us about your experiences of work.

We want you to tell us what has been good and bad about your work.

We have made a survey so you can tell us what you think.

Here is an online survey for people with an intellectual disability: https://www.rixeasysurvey.org/kiosk/alq3

Here is an Easy Read download version of the survey: ADE experiences of employment Easy Read survey

Here is a survey for families of people with an intellectual disability: https://forms.gle/uJsmjGk1f7XxawK69

Please complete the survey by 12 December 2022

You can also click on this QR Code to access the survey

Thank you to People with Disability Australia and another organisation for giving us the money to do this work.

Talking about what works and what needs to change with the NDIS

On Friday 18 November, members of the Inclusion Australia Policy Team were invited to speak to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS).

The Committee monitors and reports on the implementation, performance, governance, administration, and expenditure of the NDIS.

As part of this work, the Committee is talking to people about the Capability and Culture of the National Disability Insurance Agency (NDIA). This includes looking at how the NDIA works and how that affects people with disability and NDIS participants trying to access information, support and services.

Inclusion Australia wrote a submission to the Committee in October 2022.  This included feedback from the Our Voice Committee members. They have been talking to people with an intellectual disability around Australia about the NDIS. They talked to self-advocacy groups, peer meetings, friends, and people they work with about what is working with the NDIS and what needs to change.

The Committee invited representatives from Inclusion Australia to talk in person about our submission and to ask some more questions.

Maeve Kennedy, Senior Manager Policy and Projects, and Luke Nelson, Policy Officer and Our Voice representative for Victoria, met with the committee members in Melbourne. They included Senator Kerrynne Liddle and MPs Dr Monique Ryan, Libby Coker and Alicia Payne.

(L-R) Dr Monique Ryan MP, Libby Coker MP, Senator Kerrynne Liddle, Alicia Payne MP, Luke Nelson, Maeve Kennedy.

Maeve and Luke told the Committee that two of the big problems Our Voice has identified are bureaucracy and issues with information and planning. They also talked about the importance of advocacy – including self-advocacy – and the importance of supported decision making.

Speaking afterwards, Luke said “I was nervous at first but once I got started the nerves went away. I think that the Committee was listening. I certainly felt like we got a good reception.” You can read more of Luke’s account of the day below.

You can read our submission to the Joint Standing Committee here:  Submission to NDIS Joint Standing Committee on NDIA culture and capability – Inclusion Australia

‘Relax and be yourself – you’re not on trial!’ – reflections on talking to the NDIS Joint Standing Committee

My name is Luke Nelson. I am part of the policy team at Inclusion Australia.

On Friday the 18th of November myself and Maeve Kennedy went to the Stamford Hotel in Melbourne and attended the Joint Standing Committee on the NDIS to talk about issues that people have found with the NDIS. 

Luke Nelson, IA Policy Officer

I went because I was part of a Supported Decision Making project for the NDIS with Inclusion Australia and I am now an Inclusion Australia Policy Officer. I also did work with Our Voice about what’s working at the NDIS and what’s not working.

There were senators and MPs on the committee. We read a prepared statement and then they asked us questions around the NDIS.

We talked about issues that people have with the NDIS. For example, how difficult it is to get to speak to anyone, and the NDIS taking a long time to get any decisions. We talked about problems with self-management. We also talked about the way how it all works at the NDIA. [People told us] that every time that you had to go to the planning meeting it was like going to a court hearing – and having to explain exactly what you need all over again. There was a discussion about supported decision making, and what that was and how it helps with the NDIS. We also talked about if self-advocacy and advocacy was funded under the NDIS, and whether that would help if it was funded.

We only had a couple of days to prepare but I had good support around me to do it. To help prepare I read a lot about what people told Our Voice in the consultation. We had to go through it and pick out what we were going to bring to the Joint Standing Committee because the hearing was about the NDIS culture. We had to pick out things that were related to that topic.

I was nervous at first but once I got started the nerves went away. I think that the Committee was listening. I certainly felt like we got a good reception. They were very easy to talk to. Even though it was a serious thing, they didn’t make it feel too serious, they just let us have a conversation. So that was good.

I think they were surprised at some things we said, for example, when people told us that the NDIA doesn’t feel like a welcoming environment; it doesn’t feel like people with disabilities are welcome there. I think that sort of shocked them but hopefully they will go away and think about what we said. I think we got the message across.

I have spoken to different committees in the past, like reference committees with people with disabilities on them and disability professionals but nothing in terms of Senators and stuff like that.

If I was giving advice to someone who had to speak in front of a committee to help them prepare, I would say ‘relax and be yourself – you’re not on trial!’

Make sure that you read your notes properly. It helps to prepare by reading what you’re going to say, practicing a few times around what you’re going to say so that you don’t forget. I enjoyed it. It was nerve wracking but a great learning experience.

Invest in support for decision making to ease guardianship challenges

The experiences of people with disability with guardianship and substituted and supported decision making will be the focus of a Disability Royal Commission public hearing beginning Monday 21 November.

Inclusion Australia welcomes this hearing as an opportunity to talk about the rights of people with a disability to participate in decision-making to the greatest extent possible, and to interrogate the ways that the current systems undermine this right.

Support for decision making is a priority

The UN Convention on the Rights of Persons with Disabilities, which Australia has ratified, affirms the right of all people with disability to equal recognition before the law and says that every person should have their legal capacity acknowledged on an equal basis with others. It recognises that access to appropriate supports is an important part of this.[1]

This is far from where we currently are.

Catherine McAlpine, CEO Inclusion Australia, said “for many people with an intellectual or cognitive disability in Australia, this is not the reality. Many people are routinely denied the right to make decisions, and so have decisions made for them. Our systems entrench this. As well as increasing the risk of abuse and exploitation, this normalises the idea of substitute decision making, rather than it being a measure of last resort.”

There has been significant work exploring supported decision making and legal capacity already. Key recommendations from the Australian Law Reform Commission’s 2014 report, Equality, Capacity and Disability in Commonwealth Laws, [2] have never been implemented. This includes reforming relevant Commonwealth, state, and territory laws to be consistent with the National Decision-Making Principles [3] and establishing a Commonwealth decision making model. The report recognises that equitable and supported decision making is also fundamentally relevant to other legislation, systems, and programs, including health and social security.

Ms McAlpine said, “The Royal Commission now has an opportunity to build on the ALRC’s important work and ensure implementation of reforms that would make a real difference to the lives of people with an intellectual disability.”

Inclusion Australia and our members have long advocated for better support for people with an intellectual disability to make their own decisions. [4] Our 2021 submission to the National Disability Insurance Agency [5] reports on feedback from people with an intellectual disability and highlights the barriers many people face. This includes making sure the NDIS includes the time and costs involved in building people’s capacity to make decisions.

Ms McAlpine stated, “We call on the Government and NDIA to invest in targeted programs which increase the understanding and skills of decision makers and their supporters. Such training should be co-designed and led by people with disability.”

Inclusion Australia’s Our Voice committee provides advice to the organisation’s board and comprises people with an intellectual disability from across Australia. Our Voice members say, “people with disabilities have the right to make decisions big and small about their lives. This means everyone with a disability and every decision. If we need help, we need good help from people who know us well.”

Pressures for substitute decision making are increasing

Inclusion Australia and our members have heard many stories of pressures on people with an intellectual disability and their families to apply substitute decision making or guardianship. Administrative needs are commonly quoted, and there is strong pressure from some service providers.

Ms McAlpine said, “We heard from one family member last week that they were unable to even book an allied health appointment for their son without showing they had power of attorney. They couldn’t get past the receptionist.”

“However, there is little publicly available data on guardianship, substitute decision making, and there is no nationally consistent approach to collecting and monitoring data on guardianship and intellectual disability. This includes the reasons why guardianship is applied,” said Ms McAlpine.

“We call on the Disability Royal Commission to make recommendations around data collection that will increase our understanding.”

Understanding of supported decision making rights and practice must be embedded across our disability service system, and others. This includes access to capacity building for individuals and decision supporters, like family and friends.

Ms McAlpine said, “It is critical to ensure substitute decision making rulings are specific and only applied where needed, and that they are time limited. It is also essential that they are built on the foundation of will, preferences, and rights.

Where an individual requires significant support for decision making, guardianship may be part of the response, but this must centre the individual’s rights and wherever possible be led by their will and preferences.”

“Inclusion Australia strongly believes that guardianship should be a genuine response of last resort and encourages the Disability Royal Commission to think deeply about what is best for people who need urgent action to escape violence or avoid unsafe and harmful environments,” said Ms McAlpine.

“Even with additional investment in supported decision making, it is likely there will still be a role for guardianship for some time – until there are better alternatives for people to escape from violence, abuse, and the control of others.”

People with disability need clear options now to be able to leave situations of violence, abuse, neglect, and exploitation – even when they do not choose to.

In the interim, urgent investment is needed to strengthen human rights approaches within the current guardianship model.

One example is the current lack of resources and support for people appointed as Guardians. Once appointed there is little guidance on good practice or responsibilities. There is an urgent need for such training and information which draws on the concepts of ‘will, preferences and rights’ articulated in the UN CRPD. This training must draw from the experiences of, and be co-designed and co-delivered with, people with disabilities.

We also need to recognise the different impacts, experiences, and pressures on First Peoples and people from culturally and linguistically diverse backgrounds. Individualist decision making approaches are not always appropriate for community cultures, and more work is required to design systems and ensure practice is culturally safe, appropriate, and equitable.

We applaud the Disability Royal Commission for dedicating this public hearing to decision making and guardianship. It is vital that people with disabilities have this opportunity to publicly share their lived experience of the current models. We hope that the Commissioners will recognise the urgent need to address the current approaches to decision making in their recommendations.

Inclusion Australia Disability Royal Commission Guardianship Media Statement – November 2022

Inclusion Australia Guardianship Media Statement in Easy Read

Public hearing 30: Guardianship, substituted and supported decision making will run from 21- 25 November at the Novotel Sydney Olympic Park, NSW

For more details visit: https://disability.royalcommission.gov.au/rounds/public-hearing-30-guardianship-substituted-and-supported-decision-making

__________

[1] See Article 12 – Equal recognition before the law, https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-12-equal-recognition-before-the-law.html

[2] ALRC Report 124, https://www.alrc.gov.au/publication/equality-capacity-and-disability-in-commonwealth-laws-alrc-report-124/

[3] Principle 1: The equal right to make decisions; Principle 2: Support; Principle 3: Will, preferences and rights; Principle 4: Safeguards.

[4] See recent edition of our newsletter, Including Everyone.

[5] https://www.inclusionaustralia.org.au/submission/submission-to-the-ndia-on-support-for-decision-making/

 

Further Reading

“Everyone getting NDIS services should know they have rights”

Your Service, Your Rights Coordinator William Ward-Boas talks about his role on the project and speaking up about your NDIS services.

Hi, my name is William. I have recently started in my role as Coordinator for Your Service, Your Rights at Inclusion Australia.

Your Service, Your Rights is a project about sharing information with people with an intellectual disability about their rights when getting NDIS services.

We are also sharing information with services about how to include people in making sure their services are safe and good quality.

The project is funded by the NDIS Commission.

An important part of the workshops is talking about the NDIS Code of Conduct so that people know what they can expect from their services.

We also talk about advocacy and who can support people to speak up to their services or the NDIS Commission.

Your Service, Your Rights workshops are being delivered by Inclusion Australia’s member organisations across Australia. This includes DDWA in WA, SACID in South Australia, Speak Out in Tasmania, VALID in Victoria, CID in NSW, and P2P in QLD.

The workshops are facilitated by people with an intellectual disability and their colleagues. Each state has fantastic people doing the work and we catch up every month to reflect on how that is going in our Facilitator Network.

A screenshot from an online meeting with 10 people
Online meeting of the Your Service, Your Rights facilitator network

My job is to coordinate the facilitator network. These meetings are a place for the group to share their experiences about how the workshops are going, what has worked for people before and sharing helpful tips with each other.

I also make resources and put things into easy read to support people with delivery.

Hearing from the facilitators from each state also gives us the opportunity to give feedback to the NDIS Commission as we go. It has been excellent to have a great team of people who are willing to share their experiences.

I am enjoying this role because the information in the Your Service, Your Rights workshops is so important. When I first got NDIS services this information would’ve been really useful.

Everyone getting NDIS services should know they have rights and what to do if their rights aren’t being met.

William Ward-Boas – Your Service, Your Rights Coordinator

To find out more: https://www.inclusionaustralia.org.au/project/your-service-your-rights/

Budget offers hope for people with an intellectual disability and families but more work needed to improve employment options

There was good news from the first budget under the new Australian Government with the announcement of funding for a National Centre of Excellence in Intellectual Disability Health.

The Government has committed $23.9 million over four years from 2022-23 with funding to continue beyond those four years.  This follows many years of campaigning by advocates to end health inequalities for people with an intellectual disability which mean people with an intellectual disability have a life expectancy 27 years less than people without disability.

Inclusion Australia also welcomes the Australian Government’s commitment to, and additional investment in the National Disability Insurance Scheme (NDIS) including:

  • $385 million additional operational funding and a lifting of the staffing cap at the NDIA, which we hope will improve responsiveness of the NDIA to implementation challenges
  • $5.8 million for an Alternative Dispute Resolution Pilot
  • $21.2 million to support people and families with the Administrative Appeals Tribunal (AAT) appeals process
  • a new Fraud Fusion Taskforce to address fraud and serious non-comp

Our CEO Catherine McAlpine said

“We are pleased to see these investments as a demonstration of the Government’s commitment to the Scheme’s success and sustainability. The NDIS is of significant importance to the economic wellbeing people with disability.  Funding for the Scheme is an investment in the future of people with an intellectual disability. It supports people to build their independence and explore options to be part of the workforce and the broader community. It also supports families to continue in the workforce.”

The NDIS is an insurance scheme. It drives outcomes for people with disability, including inclusion and employment, as well as reducing costs in other systems like health. Measuring cost without benefit is meaningless. We urge the Government to continue to take a broad look at the role of the NDIS and in particular its connections to other departments and other initiatives to increase the economic participation of people with intellectual disability.

Disability Employment Services – more work to be done

The budget took a more cautious approach to investment in improving employment outcomes for people with disability, with the announcement of “a phased approach” to delivering and implementing reforms to Disability Employment Services. Notably, current DES funding agreements will be extended for 2 years to 30 June 2025.

The Government announced a trial to “improve pathways into the current DES program for those without mutual obligations such as Disability Support Pension recipients and NDIS participants.” A joint taskforce will also be established, reporting to the Minister for Social Services and the Minister for Employment and Workplace Relations.

Catherine McAlpine said “We are disappointed not to see more targeted investment in improving open employment options for people with an intellectual disability. There has already been considerable consultation and work with disability advocates and the disability employment service sector over the past 18 months to identify a way forward. However, we look forward to working with new Government to make sure people with an intellectual have a voice and a role in reshaping employment pathways.”

 

Catherine McAlpine, CEO, Inclusion Australia, is available for media comment on [email protected] or 0419 530 524

Inclusion Australia is the national voice for people with intellectual disability and their families.

NDIS review welcome but must include people with an intellectual disability

Inclusion Australia welcomes the announcement today of an independent review of the National Disability Insurance Scheme (NDIS). The Government says the review will look at the NDIS design, operation, and sustainability to “get the NDIS back on track.”

Following soon after the recent appointment of a new CEO and NDIA Board chair, this review presents an opportunity to revisit the original aims and principles of the scheme as it approaches its 10-year anniversary.

The review will be co-chaired by Professor Bruce Bonyhady and Lisa Paul AO, former Secretary of the Australia Government Department of Education and Chair of the Expert Panel for the Quality Initial Teacher Education Review.

They will be supported by a panel of disability advocates, including former Queensland Anti-Discrimination Commissioner Kevin Cocks AM; General Manager of the Melbourne Disability Institute Kirsten Deane OAM, Executive Director, Community Connections, Dougie Herd; Dr Stephen King from the Productivity Commission; and Judy Brewer AO, a high-profile speaker, writer and advocate on issues relating to education, autism, and family carers.

Launching the review in Canberra today, Minister for the NDIS Bill Shorten said “the panel chosen to lead the review are some of Australia’s leading experts on disability and each of them comes to the table with the aim of ensuring the NDIS achieves its goal and is there for future generations.”

Inclusion Australia recognises the significant experience of the panel members across a range of disability issues, with several members involved in the initial design and implementation of the NDIS.

We welcome news that the review will “work with participants, their families and carers.” However, with around 20% of NDIS participants having an intellectual disability, and over 60% with a cognitive disability, it is critical that people with relevant lived experience are supported to participate in the review.  Targeted, accessible, co-designed strategies are needed to ensure the voice and experience of people with an intellectual disability are heard and taken into account.

As noted this week in a speech by Disability Discrimination Commissioner, Dr Ben Gauntlett, “people with intellectual or cognitive disability need to be included in how we design policy.”  This review provides an opportunity to show that the NDIS can reflect the need of all people who use it.

There will be a webinar about the review this Thursday 20 October 2022 from 4.30pm AEDT. For more details visit: www.ndisreview.gov.au/news/live-webinar

The panel will deliver a final report by the end of October 2023.

For more on the Review, visit www.ndisreview.gov.au

 

Australians with disability need action to remove barriers to secure, safe and accessible housing

Joint statement from DANA, PWDA and Inclusion Australia

Next week, the Disability Royal Commission will focus on people with disability who have experienced homelessness, including living in boarding houses and other forms of insecure or inadequate housing.

Public hearing 26 will take place in Parramatta, NSW from 29 August to 2 September, 2022.

We welcome this public hearing as an opportunity to hear about the impact of inappropriate housing directly from people with disability, and to discuss the range of steps urgently needed.

Ahead of the hearing, we have joined with People with Disability Australia (PWDA), Disability Advocacy Network Australia (DANA) to release a joint statement outlining concerns and recommendations around housing for people with disability.

We and our members regularly hear from and provide support to people with disability who find themselves in inappropriate housing. Many have also experienced more direct forms of homelessness such as couch surfing and even street sleeping.

For far too many people with disability, the limited choices around housing further encourage exclusion and reinforce group living models where people with disability have reduced choice about who they live with and where they live. The Royal Commission has already heard multiple stories of abuse, violence, neglect, and exploitation in such settings.

Our joint statement highlights some of the significant and wide-ranging consequences for people with disability of not having a safe, secure and appropriate place to live – many of which will be illustrated by the people with disability giving evidence at next week’s hearing.

In considering people’s evidence, we ask the Royal Commission to acknowledge that:

  • Safe and secure housing is critical to exercising our human rights and accessing supports and services
  • People with disability have a right to choose where, and with whom, we live
  • Structural barriers to safe, secure and accessible housing must be addressed to create genuine inclusion for people with disability.

Our statement makes practical and achievable recommendations for urgent policy changes. These range from reinforcing the mechanisms of choice and control to increasing access to accessible social housing.

“As the national representative body for people with an intellectual disability we are concerned about the slow drift back to institutional housing models. Although many older centres have closed, in some cases they are being replaced with new buildings and apartments on the same sites, with the same staff, still segregated from the community. The DRC must examine the institutionalisation people with intellectual disability are still experiencing across all housing models, especially housing that is provided by organisations with a history of large-scale institutionalised practices.” Catherine McAlpine, CEO Inclusion Australia

The Disability Royal Commission’s final report is due in September 2023. In issuing this joint statement we call on the Royal Commission to make recommendations that make a meaningful difference for people with disability and break the policy inertia that has allowed these unacceptable conditions to continue for too long.

The joint statement can be read in full here: DRC Public Hearing 26 Joint Statement – August 2022

A media release about the joint statement is also available: MEDIA RELEASE Housing action long overdue for people with disability

Information Gathering for Access and Planning workshops

Following the clear message from the disability community rejecting Independent Assessments, the National Disability Insurance Agency (NDIA) has been exploring alternative approaches to ensure people and families have more control over NDIS application and planning processes.

One element of this is IGAP – or Information Gathering for Access and Planning. This is about the how people and families provide information to the NDIA when applying to the NDIS or for planning processes.

Inclusion Australia has been engaged to run workshops in August with people with an intellectual disability and families to better understand people’s experiences of these processes.A group of people sit around a table having a meeting

There is a choice of three online workshops for up to 6 people with disabilities.

  • Tuesday 16 August (2 – 4pm AEST)
  • Thursday 18 August (11am – 1pm AEST)
  • Monday 22 August (2 – 4pm AEST)

There will also be a separate evening workshop for up to 8 family members:

  • Wednesday 24 August (7pm to 9pm AEST).  

All attendees will be paid $50 per hour for taking part in the workshops.

A woman reading an open white book with black text. The text says "Easy Read".

To find out more or to register for a workshop please contact Jamie Bannister via [email protected].

Easy Read information about IGAP and the workshops is available here: NDIA Workshops – Easy Read

For anyone unable to attend, the NDIA also has an online survey seeking feedback on this process: IGAP_Project_CS (ndia.gov.au)

Your Service, Your Rights workshops

New workshops to help understand your rights when you receive services through the NDIS.

The Your Service, Your Rights logo, which is the project name in a speech bubble

Everyone has rights. Do you know what your rights are when you receive services through the NDIS?

Inclusion Australia is working with the NDIS Quality and Safeguards Commission to deliver free workshops for people with an intellectual disability and their supporters.

The workshops are about:

  • Rights and Services: What are rights and why are they important for everyone? How do you know if you’re getting your rights met by your service?
  • NDIS Commission – Code of Conduct and Complaints: What is the NDIS Commission? What do workers need to do to make sure you get your rights, and how can you make a complaint to the NDIS Commission?
  • Speaking Up and Supports: Why it is important to speak up; how to get support; using an advocate.
  • Being Involved: what are the things your service can do to include you in making sure your service is safe and good quality?

Workshops are happening around the country from now until June 2023. Some workshops are in person. Some workshops will be online.

Contact the Inclusion Australia member in your state or territory to find out about workshops happening near you.

 

For more information, visit our Your Service, Your Rights project page.

Living with COVID-19 and staying safe

An accessible new video to help you make the right decisions for you.

COVID-19 is still very common in the community.Covid Vaccine Booster

There is also risk for many people from catching the flu.

We want to make sure people with an intellectual disability have the right information to help stay as safe as possible.

That’s why we have made a new film with our friends and colleagues at Speak Out Advocacy in Tasmania.

The film is called Living with COVID-19.

It has information about staying safe and doing what is right for you.

You can watch it here:

This is the follow-up to our 2021 film to help people make decisions about getting the vaccine. You can watch the first film here.

More Information

For the latest COVID-19 information by the Australian Government in Easy Read visit COVID-19 vaccination – Easy Read resources

You can also visit our COVID-19 page with links to state and territory information: COVID-19 – Inclusion Australia

 

This video was made possible through philanthropic funding. We are grateful to our funders for their generous donation.