Author: Jamie Bannister

Family members have a critical role in the lives of people with an intellectual disability. The experience of families will be crucial to shaping the future of the NDIS.

Inclusion Australia is running a series of online workshops as part of the independent review of the National Disability Insurance Scheme (NDIS).

These aim to give people with an intellectual disability, families, and other experts an opportunity to have a say in the Review.

Throughout July and August, we will be running online workshops on Zoom with family members.

We specifically seek your insights on the following topics:

☐ ‘Reasonable and necessary’ supports and group services – The NDIS can fund supports considered to be ‘reasonable and necessary’. Sometimes this leads to inconsistent decisions, with people with an intellectual disability asked to use their funding for group services, rather than 1:1 supports.

☐ Home and living – Home and living supports help people to live in their own home or in supported accommodation. Supported Independent Living (SIL) is a support for people who need lots of help at home. Specialist Disability Accommodation (SDA) are homes especially for people who have very high support needs.

☐ Complex support needs and restrictive practices – People who have complex support needs often need a lot of support to do everyday things. They are also more likely to experience restrictive practices when receiving supports.

☐ Access and planning – This is about applying for the NDIS and the process of NDIS planning meetings.

☐ Supported decision making – This is about people making their own decisions with the right support.

Each workshop will last two hours. Evening options will also be available.

Workshop participants will receive a payment of $140 for taking part.

All information will be deidentified to ensure your identity remains anonymous.

How to register

If you would like to join one of these workshops, please email Emma Bloom, Engagement Officer via [email protected] by Wednesday June 28.

Extra Reading!

Our first submission to the NDIS Review can be found here (more to come soon!)

• Download: Submission to the NDIS Review Panel on Quality and Safeguarding (PDF)
• Download:

The NDIS is now 10 years old. With the Independent Review of the NDIS underway we are likely to see some significant changes.

DSC’s NDIS Conference took place in Sydney in June. The two-day conference was an opportunity to hear from people who will help shape the future of the NDIS.

Kalena Bos is the current Chair of Inclusion Australia’s Our Voice Committee and an Inclusion Australia board member. She is a member of the Speak out Association of Tasmania.

Kalena represented the intellectual disability community at the conference, presenting on, ‘An Accessible NDIS: Learning from people with an intellectual disability and what needs to change’.

She said one word to sum up the conference would be “fancy”! On the first day Kalena walked into the main room and was shocked by how many people were there. There were over 1,000 people attending in person and online. “I felt like I was going on TV! There was a dressing room, and an area for speakers to wait before going on stage”.

As well as her own experience navigating the NDIS, Kalena was representing the work that Our Voice members have been doing around the country over the past year. This includes asking people with an intellectual disability about the NDIS and what needs to change. “Navigating the NDIS can be hard and stressful. Participants do not feel like they are being heard,” Kalena told us. “Because of these issues, people with an intellectual disability are not getting what they need from their NDIS plans.”

Kalena attended the conference with Maeve Kennedy, Senior Manager of Policy and Projects at Inclusion Australia. They identified things that could be helpful, including:

• More information about what you can ask to be included in your NDIS plan.
• Asking the right questions can help individuals meet their needs.
• Easy Read Guides to make information easier to understand.
• Easy Read NDIS plans.
• Making the NDIS call center, website, and portal more accessible.
• Treating people with a disability just like everybody else.

Kalena was also very interested to hear about the new NDIS Supported Decision Making policy. “Supporting decisions shows respect and understanding.” she told us. “I’m looking forward to finding out what the new policy means for people with disability and how it will work.”

Two other speeches at the conference stood out for Kalena. Senator Jordon Steele-John’s speech about a fair, accessible, and fully funded NDIS resonated with her. She also found Bill Shorten’s speech interesting. He spoke about how the NDIS is changing lives. And that participants can be reassured that the goal is to improve the system and not just save money. Kalena also enjoyed the speeches about quality and safeguarding and the Royal Commission.

This was also Kalena’s first time travelling alone. She told us she enjoyed seeing the Sydney Opera House and Sydney Harbour Bridge for the first time. This was especially exciting as it was lit up with the Vivid Festival lights.

Kalena was very proud of herself. “I cried after my speech. People came up to me to say congratulations. Mostly from the Council for Intellectual Disability, and I cried even more. But in a way that I was thankful”.

Reflecting on the conference, Kalena said “the NDIS Review is a good chance to fix things and I am looking forward to seeing what happens”.

People with disability historically have significantly lower rates of workforce participation than people without a disability. People with an intellectual disability face greater barriers to employment than most other people with disability. This increases the chance of people working in Australian Disability Enterprises or ADEs where they can be legally paid as little as $2.67/hour.

The Disability Royal Commission has highlighted exploitation, discrimination and other injustices experienced by people with intellectual disability working in ADEs and supported employment programs. Human rights violations are also experienced in other countries. Japan, for example, also has segregated workplaces and subminimum wages for people with intellectual disability.

People with an intellectual disability have the right to work on an equal basis with others, and to workplaces that are open, inclusive and accessible. Urgent change is needed to ensure fair pay, open employment and realisation of people’s right to work.

The University of Technology Sydney (UTS) is hosting a free online discussion with advocates and researchers to talk about disability, employment and human rights in Australia.

The event is on Friday June 16 from 11am-12pm, AEST.

They will explore such questions as:

• What are the experiences of people with an intellectual disability working in supported employment programs?
• What is wrong with segregated employment and subminimum wages?
• What advocacy are people with intellectual disability and advocates leading in this area and what changes do they want to see?
• How are families of people with intellectual disability supporting the calls for transition away from supported employment programs?
• What are key features of inclusive open employment?
• What good practice is already happening?
• What does government need to do?
• What can employers do?
• How can the broader community support this transition?

This event will be hosted Dr Linda Steele, Associate Professor at Faculty of Law, Law Health Justice Research Centre and Disability Research Network, and Professor Simon Darcy Faculty of Business and Disability Research Network at UTS.

Their guests will include:

• Brooke Canham, Policy Officer, Inclusion Australia
• Sindre Bloch, Manager, More Than Just a Job, Council for Intellectual Disability
• Jun Takagawa, Professor, Faculty of Contemporary Law, Tokyo Keizai University

To find out more and to register, please visit: People with Intellectual Disability and the Human Right to Work

Easy Read information about this event can be found here: Disability Employment Human Rights Event Final

• Download: The Right to Work - Easy Read information (PDF)

In August 2022 the Joint Standing Committee on Electoral Matters had an inquiry into the 2022 Federal Election.

The Committee is a group of politicians who talk about things to do with voting and elections.

One of the things they talked about was how to make it easier for people with disabilities to take part in elections.

Inclusion Australia made a submission to the Committee. We made recommendations about how Australia’s electoral process can be more inclusive and accessible to people with an intellectual disability.  You can read our submission here.

The Committee invited Inclusion Australia to take part a special panel with other advocates in April 2023 to talk more about our submission.

Brooke Canham and Maeve Kennedy from our policy team joined the panel to talk about our recommendations and answer questions.

Brooke took some time to share her thoughts on her experience with the Panel with us …

In April I spoke to a panel of people about the election, with my Manager Maeve.  I told them about how I vote. We also gave them some evidence by Inclusion Australia.

The panel included people from different disability organisations, including AFDO and Blind Citizens Australia. They talked about voting for people who are blind.

I gave an opening statement. This is a 5-minute message where you tell people what you want to say and what needs to change. You answer questions at the end, and there can be multiple questions.

In our statement we told the panel that we want to make sure it is accessible for people with disabilities to vote. We said it is your basic human right and we spoke about the UN Convention that protects people with disabilities.

I told the panel that it is important for me to vote. When I vote I feel like they are hearing other people’s perspectives and hearing from people who have a disability. It shows that we know who we want to win, and we understand about the election and the voting systems.

I can vote by myself, but if I get stuck, I ask my parents for help. I ask Mum after she votes and then she gives me a hand. I do know who I want to vote for, but I sometimes muddle the numbers up.

We also said that it is not good when people put How To Vote cards in our face when they go to vote. I don’t like having those papers thrown at you. That makes me very confused and very overwhelmed. I know it is hard for me and it could be hard for someone else.

We also said there should be more easy read information. There is some online, but it’s hard to find and it should be available in person on the day.

We also think people with an intellectual disability should be able to have more time at the voting stand. People might feel rushed. I have been told to hurry up as there are queues. It overwhelms me and it makes me scared that I’ll mess it up and my vote won’t count.

It would also be good to have someone to support you when you’re voting. We talked about Supported Decision Making with the panel and how that might help some people with voting.

It was good talking about these things with the panel. I was a bit nervous at the start because Maeve’s microphone wasn’t working but it worked in the end.  Some of the words were hard to understand. If there are meetings like this again about different things it would be good to break it down if there’s a person with an intellectual disability. That way I can understand without have to ask others.

I hope that by talking to the panel that there’s a change on how to vote out a better system format for people with disabilities.

Brooke Canham, Policy Officer – May 2023

• Read the opening statement by Brooke and Maeve here: Joint Standing Committee on Electoral Matters Opening Statement
• You can read our submission here: www.inclusionaustralia.org.au/submission/inquiry-into-the-2022-federal-election/

There was good news from the Australian Government budget this week with the announcement of funding for a range of measures on supported employment.

Supported employment for people with disability is typically provided in Australian Disability Enterprises, also known as sheltered workshops. Providers can legally pay employees as little as $2.75 per hour under the current system, with many people with an intellectual disability having no pathway to explore open employment.

The Government has now committed $54m over 4 years, which includes:

• $35m over 3 years to establish a fund for supported employment providers to evolve business models
• $11.7m over 4 years for a targeted disability employment advocacy service and information program for supported employees
• $6m for evaluation of existing and new initiatives and trials, including the new Structural Adjustment grants, to build a robust evidence base to inform ongoing policy development
• $1.1m for research to establish a Disability Employment Centre of Excellence.

People with an intellectual disability are clear that support to access to more employment opportunities is urgently needed. However, many are unclear about their rights and the options open to them.

Together with our state and territory members, Inclusion Australia has worked tirelessly with our community to articulate the complex barriers to employment that people face.

We also worked together to identify practical solutions, grounded in evidence. This work was shared with the Government and the Disability Royal Commission as part of broader conversations on employment.

Catherine McAlpine, CEO of Inclusion Australia said “It’s great to see signs that people with an intellectual disability are being heard by the Government. This investment is an important first step in changing the conversation about employment for people with an intellectual disability.”

“We are particularly pleased to see the $11.7 million investment in advocacy and information services. This much needed support will help people with an intellectual disability and families navigate the complex employment pathways they face. We also hope it will mean that people with an intellectual disability will have more opportunities to be part of the reform process and codesign a way forward with Government,” said Ms McAlpine.

Inclusion Australia also welcomes the announcement of plans to establish the Disability Employment Centre of Excellence.

“There is plenty of evidence about what works for people with an intellectual disability when it comes to finding and keeping a job. Sadly, this evidence is not widely known or used. The Centre of Excellence will be an important first step to bring this knowledge together to help inform future approaches.”

Ms McAlpine said, “we look forward to working closely with the Department of Social Services and the National Disability Insurance Agency to continue this work and make sure people with an intellectual disability have more, properly paid, employment options.”

Concerns remain over NDIS growth targets

Elsewhere in the Budget it was good to see government commitment to the NDIS feature so prominently in the Treasurer’s speech. However, we share the community concern about the proposed limits on growth for the Scheme. The forward estimates suggest the fourth year budget for the NDIS will be tight as the growth targets hit.

Catherine McAlpine noted “The Government’s commitment to the Scheme is important. Funding for the Scheme is an investment in the future. It supports people with disabilities to build their independence and be part of the workforce and the broader community. It also supports families to continue in the workforce.

When the NDIS Review was announced last year, the Government made clear that it would work with the disability community to unpack the challenges and co-design the solutions. We urge the Government to continue on this path to build trust and meet the underlying principles of the scheme.”

Links:

• Submission to the Disability Royal Commission on Inclusive Employment: inclusionaustralia.org.au/submission/equal-pay-equal-rights/
• Improving Support for People with Disability: Key measures in Australia’s 2023–24 May Budget [Department of Social Services]
• Media release from Minister Rishworth: More opportunities and investment to support people with disability
• Media Release from Minister Shorten: Getting the NDIS back on track 

• Download: Inclusion Australia response to the Federal Budget 2023 (PDF)

Inclusion Australia welcomes the release today of the long-awaited NDIA Supported Decision Making policy.  This is an important policy for people with an intellectual disability and their families. It clearly sets out that people have a right to make their own decisions about the NDIS, and to get the supports they need to make decisions.

Inclusion Australia CEO Catherine McAlpine said, “It is fantastic to see the NDIS policy on supported decision making released. Choice and control for people with an intellectual disability was a key goal of the original Scheme design and it’s just as important today.”

“2023 marks the 10^th anniversary of the Scheme so it’s great to see the NDIA committing to supporting participants to make their own decisions about their lives.”

Without decision-making support, many people – especially people with an intellectual or other cognitive disability – are not able to live the lives they want or are not aware of the options open to them. This situation risks increasing segregation and reducing inclusion, as NDIA Chair Kurt Fearnley expressed concern about last week.

“We hope this policy will be part of changing the conversation so people can explore options with people they trust and make decisions that are right for them,” said Ms McAlpine.  “The next step is for the NDIA to roll out its implementation plan in consultation with people with disability. This will be critical to make sure NDIA staff and community partners understand supported decision making and are consistently implementing it in practice.”

Including the experiences of people with intellectual disability

Inclusion Australia worked with the NDIA to make sure the voices of people with an intellectual disability were included in the development of the policy.

Luke Nelson from our Policy Team helped design and co-facilitated workshops with NDIS participants around Australia to find out what people had to say about making decisions.

This included workshops with people from different cultural backgrounds, people with complex communication support needs and First Nations people from remote communities in central Australia.

Luke’s personal experience as a NDIS participant was gave him particular insight into the feedback that was heard. “It was important to have a person with disability in the workshops. People taking part knew that I had experienced similar issues and felt more comfortable talking about their experiences.”

With the new policy finally released, Luke reflected “I think this policy will give people with disability a chance to know that supported decision making is a real thing, that it can be delivered, and that the NDIA is willing to work with people with disability to make them feel included.”

“I hope this policy will bring freedom and choice to people who use decision-making in their lives,” said Luke.

Links

• Media statement by the NDIA https://www.ndis.gov.au/news/9115-media-release-minister-participants-have-greater-say-through-supported-decision-making
• Full policy including Easy Read formats: https://www.ndis.gov.au/…/supported-decision-making-policy
• Film with Luke Nelson about the new policy: https://www.youtube.com/watch?v=Gm4GtC_9bUk

• Download: Inclusion Australia statement on release of NDIS Supported Decision Making policy (PDF)

The IANT team celebrate by cutting a cake with our new logo.

On Tuesday 18^th April, we had a party to celebrate the official opening of our Inclusion Australia Northern Territory office.

It went really well and felt very welcoming.

The Welcome to Country from Jeanneen was very meaningful and personal. You could feel it when she talked.

Our CEO Catherine McAlpine talked about what we do at Inclusion Australia. The NT team talked about our work in the Northern Territory.

People enjoyed themselves and were interested in the new office. They asked a lot of questions.

The IANT team – Liz Collier, Daniel Ross, Rebecca Hell and Ben Hankin – together with our CEO Catherine McAlpine and Senior Manager, Maeve Kennedy

On Thursday we met with the Honorable Ngaree Ah Kit, the Minister for Disability in the Northern Territory.

It was nice to have her come to our office and see what we do. We are looking forward to talking with her more in the future about people with an intellectual disability in the Northern Territory.

We are enjoying working in our office. It’s nice to have our own permanent space to come to and work in.

It’s a good space and a good location. It’s a comfortable and relaxed space. You can feel the relaxation and know that you’re coming to a safe environment when you’re coming to work.

The best thing about the office is the team – we work really well together.

It’s also great to work with teams in other states and know where people are in different projects. It’s unique.

This week in Canberra, Bill Shorten – Minister for the National Disability Insurance Scheme – gave a much-anticipated speech on the future of the NDIS.

Intense media focus on the cost of the NDIS in recent months meant there was a lot of concern about cuts and changes to eligibility going into the speech. Speaking to the National Press Club of Australia, Minister Shorten instead delivered what he called ‘a state of the union’ on the NDIS.

The Minister was clear that “the National Disability Insurance Scheme is here to stay. It is not going away,” adding “but … we need to get it back on track. For the NDIS to reach its potential, it needs a reboot.”

“For the NDIS to reach its potential, it needs a reboot.”

Bill Shorten, Minister for the NDIS, 18 April 2022

Minister Shorten committed to making sure that “every dollar of NDIS funding must go to people with disability,” and outlined six priorities for “correcting course” on the NDIS.

1. Expanding the NDIA workforce
2. Increasing use of long-term planning
3. Addressing spiraling expenses
4. Better outcomes from Supported Independent Living
5. Eliminating unethical practices
6. Increasing community and mainstream supports

In Darwin to open the new Inclusion Australia Northern Territory Office, our CEO Catherine McAlpine spoke with ABC News about the speech and the issues faced by people with an intellectual disability.

“The NDIS was founded on the idea of doing things differently” she said. “We do see that, but we still see too many of the old ways of doing things – there are still too many people going into Australian Disability Enterprises (the old ‘sheltered workshops’) and group homes.”

On the proposal to review Supported Independent Living, Ms McAlpine said “People with intellectual disability by far the biggest users of SIL. We agree with the Minister that there is not enough choice for people with disability about their homes. The system delivers poor outcomes for too many people and drives people into institutional settings.”

Asked about the Minister’s commitment to eliminate unethical practice, Ms McAlpine spoke about ‘sharp practices’ used by some service providers who have control over many aspects of people’s lives including “where they live, and who they live with and what they do during the day. That is profit maximisation and inclusion minimisation.”

Also watching Minister Shorten’s speech were Brooke Canham and Luke Nelson from our Inclusion Australia Policy Team. Both are NDIS Participants, so watched with interest to hear about the changes.

Talking after the speech, Luke said that “Making sure that providers don’t overcharge, and that the participant comes first” was most important to him. Brooke was most interested in the review of Supported Independent Living and “making people in the community get the right support to independent living and letting people choose if they want to be there.”  Read more about what they had to say in this interview. 

As the national representative organisation for people with an intellectual disability and families, Inclusion Australia believes that the more than 100,000 people with an intellectual disability who are part of the scheme must be part of the conversation about the future of the NDIS. To help this we have developed an Easy Read version of the of the Minister’s speech.

We encourage you to share this with people in your networks and share any feedback to the government via the NDIS Review: Have your say | NDIS Review

To watch the Minister’s speech in full, visit:

• ABC iView abc.net.au/video/NC2312C010S00
• YouTube youtube.com/watch?v=sVORcCgBYSw&t=892s

You can also read the full speech as text here: https://ministers.dss.gov.au/speeches/10911

• Download: Bill Shorten National Press Club Speech - Easy Read (PDF)
• Download: Interview with our Policy Team on the NDIS reboot (PDF)

Your Service, Your Rights workshops are being delivered across Australia by a team of almost 30 facilitators from Inclusion Australia’s member organisations.

The workshops are running to talk with people with an intellectual about rights when getting NDIS services.

We recently got an update from Matt and Callum from Parent 2 Parent in Queensland about how they used art in their workshops.

Art from the Margins Workshops by Callum and Matt

Your Service, Your Rights is a project that we have been working on.  At the workshops in February and March 2023 we asked people to explain using different ways of drawing.

We had a large piece of paper on the table. We asked people to draw pictures about the things that we were talking to them about.

They used different colours, they sketched, scribbled, doodled and wrote notes using different markers, pencils, crayons and pens. Some people had help from their Support Workers.

We did this because some writers think that drawing helps people to listen and learn.  It also helps some people to relax when they are in big groups.

When people draw, they often get more ideas.

It can also help people to feel good about their drawings when we share them. This happened during these workshops.

Below are some examples of the pictures, with words written:

“There is creativity in all of us, but it can be buried beneath our everyday concerns.” – Phillipa Stanton

We think it is great to see the creative ways that people asked questions and talked about their rights in Queensland. To hear more stories from the team at Parent 2 Parent, please visit https://p2pqld.org.au/blog/

If you are interested in having workshops in your service, you can contact the Inclusion Australia member in your state or territory here: www.inclusionaustralia.org.au/your-service-your-rights-workshops/

To find out more about Your Service, Your Rights visit our project page on the Inclusion Australia website: www.inclusionaustralia.org.au/project/your-service-your-rights/