WID MAG 02 Mar Apr 2025 by BigDog Support

The Editor’s Desk

A coalition of 255 disability organisations and providers, including Australia’s peak disability representative bodies, have come together to call for urgent action from the Government and the new Minister for the NDIS, Amanda Rishworth, to protect the safety and wellbeing of NDIS participants amid rushed reforms. They are calling for the Government to honour its commitment to genuinely codesign reforms with the disability community and for a more careful, wellpaced process which will lead to better, fairer and more effective reforms.

Prince Long Lo has always been in Human and Community Services and that brought him to Toowoomba with Multicultural Australia.

Adrian Purtell has a new role with the Clydesdales here in Toowoomba and I had a chat about the community connections that his new position will require and his response included that it's about building strong networks and relationships.

BigDog has formed a great partnership with both the Clydesdales and the Capras and BigDog has been able to offer work for players that have come into the region, even from overseas.

Foundational Supports: A new lifeboat or a disguise to capsize us?

As many of us are aware, when states and territories signed onto the NDIS, funding was amalgamated and state and territory-based supports diminished. In many ways, the supports available through the NDIS were an improvement, but for those ineligible, there was and remains, little else available. One key target here – Autistic children.

NDIS spending is set to overtake the cost of defence by 2028, as an investigation of the $44bn scheme reveals it has become a failing, bloated bureaucracy under Labor.

The total annual staffing bill has jumped by more than a quarter of a billion dollars since the last election, with its 5070 employees in June 2022 almost doubling to 9129 by the end of last year.

Senior executives climbed from 91 to 160 in this period.

What will mandatory registration look like for SIL, support coordination and platform providers?

The NDIS Commission’s consultation paper on the registration of platform providers, says their goal is to preserve the choice and control NDIS participant’s value in platform providers while ensuring quality and safety.

At the moment the NDIS is harming some participants, not helping them, following on the CEO of the NDIA, Rebecca Falkingham’s shock admission over costly medical reports.

The LEGO Group has joined the Hidden Disabilities Sunflower to support and celebrate fans and colleagues with disabilities, conditions and sensory needs that aren’t immediately apparent.

The Federal Court of Australia ordered Valmar Support Services Ltd to pay civil penalties to the Commonwealth totalling $1,916,250 – the highest ever civil penalty imposed on a NDIS provider.

City lights for Rare Disease Day.

Steven Paull

JP (Qual) President

WhatsUp

Media Release 6 February 2025

We are calling for the Government to honour its commitment to genuinely codesign reforms with the disability community and for a more careful, wellpaced process which will lead to better, fairer and more effective reforms. With eligibility reassessments underway and support needs assessments scheduled to commence on 1 September 2025, we propose a phased approach that allows time for proper co-design, pilot testing, and refinement before widespread implementation.

The campaign statement from Every Australian Counts, endorsed by 254 disability organisations and providers, outlines the following key concerns:

Rushed Implementation

The reforms are being introduced without the promised two to five years of codesign and testing. This approach risks serious harm to participants due to untested assessment tools and budgetsetting processes.

Unjust Eligibility Reassessments

NDIS participants are receiving inadequate notice and unclear communication about required evidence for eligibility reassessments. Approximately 600 people per week are being removed from the scheme without guarantees of access to

alternate supports, putting participants’ safety and wellbeing at risk.

The signatories are calling for the Government to:

Extend Timeframes

We propose a phased approach that allows time for consultation, pilot testing and refinement before widespread implementation, to ensure reforms meet the needs of people with disability.

Commit to Real Co-Design

Collaborate meaningfully with people with disability, their families, and representative organisations to develop sustainable solutions.

Prioritise Safety and Wellbeing

Stop the rushed eligibility reassessments and ensure that foundational supports are in place for people who are not eligible for the NDIS, so that no one falls through the cracks and is left without critical services.

The statement urges the Government to course-correct and work with the disability community to develop reforms that protect participants, uphold human rights, and strengthen the integrity of the NDIS.

The EAC met recently with Minister Rishworth and Department representatives to discuss our concerns. Minister Rishworth said she was committed to working together to address community concerns. On the 3rd of February 2025, it was announced that “From today, participants will now have more time to get information to us. We have extended the timeframe for participants to provide additional information to support eligibility reassessments from 28 to 90 days.” EAC welcomes this announcement.

Time for Codesign

Statement by Dr George Taleporos, Independent Chair, Every Australian Counts

“We are united in calling on the Government to take the time to listen to the serious concerns in our community. These changes must be implemented with meaningful co-design and proper testing. The wellbeing of participants must come first. The NDIS is too important for hasty changes. With genuine collaboration, we can create reforms that protect and empower people with disability. We want to work with the new Minister to get things right. The extended timeframe for participants to provide additional information to support eligibility reassessments from 28 to 90 days is a positive step in the right direction.”

Statement by Ross Joyce, CEO of Australian Federation of Disability Organisations (AFDO):

“The government must change course on its current reform of the NDIS. Their approach must be measured and inclusive. As Every Australian Counts makes clear, it is essential that people with disability and their representative organisations are genuinely involved in shaping change that directly impacts our lives. The level of support this campaign has generated shows the willingness of the disability community to work collaboratively with government to achieve meaningful and lasting improvements. The government must listen. Rushed reforms, without proper consultation and thorough testing, risk significant harm to people with disability, and to the Scheme. If the government wants the NDIS to empower people with disability, provide the right supports in the

best way, and operate fairly and transparently, the government must listen to the community, and take the necessary time to get these reforms right.”

Statement by Trinity Ford, President of People With Disability Australia (PWDA)

“The NDIS is a lifeline for Australians with disability but rushed changes are leading to inadequate supports and harming participants. The safety, health and independence of people with disability must always come first and right now it is not.

The current reassessment process is unfair and harmful. People with disability are getting generic letters with little explanation, being given barely any time to respond, and then being removed from the NDIS at alarming rates. This process ignores human rights and leaves people without the essential supports they need to live their lives and participate in the community.

It is unacceptable to revoke funding for critical supports without ensuring there is a safety net in place. This is not just a bureaucratic failure it’s a human rights crisis.

Co-design was promised, but it hasn’t happened. Co-design means working side by side with people with disability, their families, and their representatives to make sure changes actually work for their needs. This isn’t just about doing the right thing; it’s about making sure the NDIS is the best Scheme it can be.”

See the full joint statement: https:// everyaustraliancounts.com.au/campaign -statement-take-the-time-for-codesignprotect-ndis-participants-safety-andwellbeing/

WhatsUp Feature

Minister for Child Safety, Minister for Seniors and Disability Services and Minister for Multicultural Affairs

The Honourable Charis Mullen appointed Prince Long Lo to the Multicultural Queensland Advisory Council, strengthening its membership and advocacy for multicultural communities.

Mr Prince Long Lo has extensive experience working in the multicultural sector and will bring a wealth of knowledge to the role. He is a Toowoomba resident and a certified practitioner of the Australian Association of Social Workers, with a background in community development, settlement services, education and the not-for-profit sector.

Recently I had the great please of having an interview with a dynamic young man who has made a difference in the lives of so many people in Toowoomba.

I'm Prince Long Lo. Thank you, Steven, for inviting me for this conversation. I came to Toowoomba in 2017 and so far I've spent around 6 years in Toowoomba. Before that I was in Brisbane. I was doing Uni in Brisbane. I did my degree in Bachelor of Business in Human Resources Management and Psychology and then moved on to do my Masters in UQ and Social Work.

I had a placement with Multicultural Australia and then they keep on me to continue work with them for a period of

Prince Long Lo

By Steven Paull

time as a result that I have a bit of focus with supporting the multicultural community and that's I believe how we got to know each other supporting young people in the multicultural community in connecting them with employment opportunities training opportunities, linking them with different services as well including disability support services.

I find many valuable people and very inclusive community and very good people like yourself Steven and that service providers here are very collaborative in in nature.

So yeah, that's probably my background and a little bit about myself of how I find Toowoomba such a wonderful community to be with and why I'm still here.

I understand you were brought up in Hong Kong and you came to Australia to study.

From Hong Kong yes, when I literally turned 18 and 2 months my parents sent me off from Hong Kong to Brisbane so they literally gave me a one-way ticket and sent me away.

So I know nobody in Brisbane. I don't have relatives here. So I was picked up by my accommodation provider at the time. So my agents organise all the accommodation and stuff like that. So basically, I landed at airport, someone holding a sign with my name and then I just followed that person on his car and then go to the university accommodation.

So my father's an engineer, my sister's an engineer. I'm not an engineer, I'm not a doctor, I'm not a nurse. So maybe I'm the failure of the family. (Laughs)

I'm pretty sure my parents are proud of what I'm doing, of course, but yeah, it's

just not traditional, career for myself, becoming a social worker, human service background now and now working in government, it's a different trajectory, and you never know where, it will bring you to.

“As a young migrant, I know how challenging it can be to settle into a new country.”

How did you become involved in supporting multicultural communities?

So when I was in my third year in Uni, I started volunteering with the international student services in the Uni. As a result that I got into various different state government boards and local government boards around supporting specifically international students. After that, I moved to Toowoomba and the role became broader to support the refugee and migrant community through my work.

As a result of this work I was nominated to be the Seven News Young Achiever Award in a diversity inclusion category in 2024 and I was very lucky that I am the winner of that award so yeah it's really a special thing.

I'm hearing you felt that you were lucky in winning this award.

I honestly feel like I'm lucky because in the room of such wonderful young people I see the amazing work they do across Queensland. I feel honoured to be nominated, but definitely I also feel like it's a privilege to receive the award, and I honestly feel lucky because, yeah, the judges picked me, but it doesn't mean that the other candidates are not doing important work.

Continued next page

WhatsUp Community

What sort of challenges did you face as a foreign student coming to a new country?

I did have a background, speaking English in Hong Kong, so definitely not as fluent as current, of course. Yeah, the challenge was really settling completely from a new country. I don't know anyone, not as fluent in English, don't exactly know what I am going to do, settling up new life in Australia, don't even know how to drive a go-kart and stuff like that.

Were there any areas that you felt that you just didn't fit in, or did you find that, generally, people were very welcoming?

I find that generally people are very welcoming, particularly maybe because of the circles that I'm in about. They are very welcoming and very inclusive, I should say, very inclusive.

“I’ve supported more than 5,000 newly arrived Queenslanders through mentoring, events and case management to improve economic participation, education and community integration.”

You've gone from supporting people moving of different cultures, then you've gone into working with youth. How did that come about?

So kind of the interesting factor of that is, I was employed by Multicultural Australia, but I was outreached to Toowoomba State High School for five days a week. I'm working at the school, just supporting the school students in that school and working very closely with the school youth support coordinator, the careers advisors as well as the teachers. get to learn about a lot of different

school systems as well, particularly focus on the migrant young people in social connection, in connecting them with different services and also employment and training. So it was a very broad role.

So that's how I get into a bit more youth work focus as well and then as a result, connecting more with the youth service provider as well, get to know, to work with Indigenous young people as well and also bridging the gap between the migrant young people and Indigenous young people. Some young people will have a disability as well, so you're going to know what service.

What are you doing now?

So, I currently work for Western Downs Regional Council in around economic and business development. I’m looking at sustainable population growth and how to attract migrants out to the West and supporting the workforce out in the West as well.

There's quite a lot of developments out in the Western Downs Region, particularly in the renewable energy industry, it's booming.

So yeah, I’m enjoying it so far and yeah, still contributing in different ways, but definitely, as I say, every role that I work in, I learn as well. It definitely broadened my horizons and I’ve learned different new skills and skillsets as well. And you never know what it's going to shape up in the future for myself, you know

I really like what Toowoomba offers, I like what the regions offer me a very wonderful life so far and very fruitful life and very connected life as well and just brilliant so far yeah that's fabulous. It’s been great talking to you Steven.

Multi-culture

By Steven Paull

WhatsUp

Adrian, congratulations on your appointment with the Clydesdales here in Toowoomba. How about a little bit of your background to start off with?

I'm originally from Albury, far south New South Wales. I always wanted to play rugby league as a kid. I moved away at 17 and played NRL for the Canberra Raiders and the Penrith Panthers. My journey took me over to England, where I played some years over there, I came back, captain coached in my local town at Eden. I was then the assistant coach at the Townsville Blackhawks in the Host Plus Cup and I've taken on a new role as the footy ops manager here at the Clydesdales.

Footy's taken me on a big journey. I've had some ups and downs along the way and a few health scares as well, but I

just had my 40th birthday last week and now things are going pretty good. How did the move to Toowoomba come about?

I guess when I finished my professional career, like a lot of rugby league players, I didn't look too far ahead in the future. I enjoyed my footy career, but probably didn't invest in the relationships and networks and communicating with people to sort of set myself up for after footy. So I was a bit lost and I didn't know what to

Adrian Purtell

do. So I captained coach for 6 years and then took up a part-time role at the Blackhawks. So, when this opportunity arose, it was a full-time position and it still allows me to be in the footy department and have, I guess, some success. I also completed a business degree, a sports business degree while I was playing footy so it actually aligned quite well with my education side of things as well. It was just a good opportunity to get full -time work inside sport which I'm really grateful for because there's not a lot of those roles around. So yeah, opportunity and I guess the idea that we can help grow the club and help build the community as well.

What do you see is the importance of being a good role model?

Well, I think one of the things about professional sports is that players are held at a level of esteem and people look up to them. If you've got someone who's a good player and also has a good heart and good community involvement, then people will see them as a great role model. We talk about being the change you want to see, and I know that a lot of professional clubs are going down that avenue now. I think society's expectation of sports people and what they see in role models is changing so I think being a good person is first and foremost so very important, and the beauty of that is everyone can be a good person. So I think it's even more important that they show those values of being kind and using manners and just being a good person.

How can a sports club be more inclusive?

I think rugby league is really good in welcoming everybody. When I first got

By Steven Paull

back to Albury, our team actually had an all abilities league tag side, which they'd play at our home games and just the enjoyment you saw on those participants' faces about being involved and having a bit of fun and I think that's just, yeah, even in my role, I think it just shows we're open to anybody and everybody and giving everyone an opportunity, to feel seen and heard. I was just at the sunny coast on the weekend, and they run an all-abilities training session once a month before a home game and it's definitely something that we will be working on at the Western Clydesdales.

WhatsUp NDIS NEWS

NDIS poised to cost more than Defence

Spending on the National Disability Insurance Scheme is set to overtake the cost of defence by 2028, as an investigation of the $44bn scheme reveals it has become a failing, bloated bureaucracy under Labor.

The total annual staffing bill has jumped by more than a quarter of a billion dollars since the last election, with its 5070 employees in June 2022 almost doubling to 9129 by the end of last year.

Senior executives climbed from 91 to 160 in this period.

At the top, multiple senior managers enjoy annual packages of more than $500,000, while the National Disability Insurance Agency chief executive Rebecca Falkingham’s wage and benefits amount to $808,600, which is $220,000 more than the Prime Minister earns.

It comes as complaints and reports of alleged abuse within the NDIS have soared in the past three years, with some of those most reliant on the scheme accusing the agency of unfairly slashing their funds.

Independent economist Saul Eslake said though the NDIS had saved $600m more than expected over the first seven months of this financial year, even if those savings continued, the government’s own projections showed that the scheme would cost more than Australia’s defence operating costs by 2028, if not before.

By then, Mr Eslake estimated, the NDIS – on which the number of participants jumped from 534,655 in June 2022 to 692,000 now – will cost taxpayers $58.3bn a year, compared with $55.1bn

for defence.

“At face value it is disturbing and concerning,” Mr Eslake said. “The blowout in the costs is a serious administrative failing.

“The NDIS is an incredibly wellmotivated idea, and it is a tragedy that it has been sullied by maladministration, rorting and shysters and shonks.”

Former head of the Business Council of Australia Tony Shepherd said he headed an audit of the NDIS as it was launched in 2013 and “blew the whistle”, foreseeing such problems, but none of his recommendations was taken on-board.

He said while the scheme was worthy, it had not been implemented properly and needed an external audit.

“Governments rarely do post-mortems on failures, but they have an obligation to taxpayers,” Mr Shepherd said, adding that it was “time to pause” and work through the problems.

Meanwhile, more participants are reporting alleged abuse, according to the latest data, with the number of reported incidents up from 30 per 1000 participants in 2021-22 to 40 per 1000 in the past financial year.

Incidents include alleged sexual misconduct, serious injury, abuse and neglect, and deaths.

Opposition MP James Stevens, tasked with finding wasteful government spending, said the NDIS was “rife with examples of outrageous and irresponsible spending”.

“From African safaris to luxury cruises, the NDIS has been wasting taxpayers’ money,” he said.

NDIS Minister Amanda Rishworth said year-on-year data for January showed

scheme growth was at 11%, just under this year’s target of 12%, and remained on track to hit the national cabinet’s target of 8% by 2026-27. She said significant investments had

By Julie Cross

been made in the NDIS watchdog and on keeping participants safe from fraud and exploitation through a fraud fusion task force and crackdown on fraudulent programs.

WhatsUp Providers

What will mandatory registration look like for SIL, support coordination and platform providers?

The NDIS Quality and Safeguards Commission is currently consulting on the transition to mandatory registration of platform providers, Supported Independent Living (SIL) providers and support coordinators. This follows the announcement by former NDIS Minister Bill Shorten in September 2024 that registration would soon be compulsory for these providers.

The consultations focus on how to implement this policy and create a smooth transition. Importantly, they are not about whether registration should be mandatory for these providers, as that decision has already been made by government. But they do want to know how it will impact providers and participants to aid in a smoother transition.

Support Coordination Providers

The decision to make registration mandatory for support coordinators comes off the back of the Commission’s Own Motion Inquiry in Support Coordination and Plan Management, which concluded that good support coordination facilitates choice and control for participants. But there have also been ‘widespread issues’ with integrity, conflict of interest and coercion.

The Commission has developed a consultation paper which outlines how they intend to transition support coordinators and SIL providers to compulsory regis-

tration (platform providers get their own separate consultation paper).

There are currently two registration groups for support coordinators:

• Registration Group 0106: Support coordination (Levels 1 and 2)

• Registration Group 0132: Specialist support coordination (Level 3)

Providers registered under group 0106 (Support Coordination Levels 1and 2) are currently only audited against the Core Module, while providers registered under group 0132 (for Specialist Level 3 Support Coordination) complete the Core Module and a Specialist Support Coordination Module.

The Commission is proposing to consolidate these two registration groups into one - group 0132. However providers will still only need to complete the specialist support coordination audit module if they intend to offer Level 3 Support Coordination.

So what does all this mean for Support Coordinators? The consultation paper proposes:

Unregistered providers submit registration application within 3 months of transition date and full certification audit within 12 months from registration application (core module + supplementary specialist if applicable)

Registered providers (but not for support coordination)

Apply to have registration varied to include support coordination.

Mandatory Registration

By Sara Gingold DSC

Assessed against the Core Module (+ supplementary specialist if applicable)

Registered support coordination providers registered for 0132 - no action is required (though registration becomes mandatory).

Providers registered for 0106 (Levels 1 and 2) will transfer to 0132 (may be done via Commission initiated variation).

SIL Providers

Most SIL providers are registered, but registration isn’t compulsory. The Commission’s Own Motion Inquiry into supported accommodation, as well as the Disability Royal Commission and other inquiries, raised concerns about SIL being provided in closed settings by unregistered providers with limited regulatory oversight. These conditions can lead to abuse and neglect. The Commission also noted that SIL participant tend to have larger plan budgets, which can make them targets for exploitation. The average plan for a participant with SIL is $451,100, compared to $58,900 for non -SIL participants.

SIL providers are currently registered under registration group 0115 (Assistance with Daily Life Tasks in a Group or Shared Living Arrangement). This registration group also includes other supports, including short term accommodation (STA), medium term accommodation (MTA) and individualised living options (ILO).

The Commission is proposing creating a new sub-category in registration group

0115 called Assistance with Supported Independent Living. This change would not impact STA, MTA or ILO providers.

The Commission is doing separate work on new Practice Standards for SIL providers.

So what does all this mean for SIL Providers? The consultation paper proposes:

Unregistered providers

• Submit registration application within three months from implementation date

• Full certification audit within 12 months of registration application (core module)

• Providers can continue delivering supports during the registration process. Registered providers (but not for 0115)

• If not already, registered providers must undergo certification audit against the Core Module within 12 months. Providers can continue delivering supports during the registration process.

• The Commission may consider transitioning some already registered providers through a Commission initiated variation.

Currently registered for Registration Group 0115

• No action is required though registration becomes mandatory).

Continued next page

WhatsUp Changes

Platform providers

The Commission’s Own Motion Inquiry into Platform Providers found the benefits of platform providers are that they allow participants to choose their workers, easily access support and have greater flexibility over when services are delivered. However, it also found that more needed to be done to ensure the safety of participants using these supports.

Platform providers do not have their own registration group. Providers who choose to register do so under the registration group of the services they provide.

The Commission’s consultation is focused on two main areas:

The definition of platform providershow the Commission defines platform providers will determine how wide the mandatory registration net is. The Commission’s starting point definition is that a platform provider ‘uses a profile-based platform. to connect participants with workers to deliver NDIS supports.’

The Commission has tried to identify the shared characteristics of a platform provider including that it is a platformbased service (e.g. a website or app), the platform collects fees and that participants are linked to workers and services. The Commission also wants the power to designate organisations as

platform providers. Consultation questions focus on the risks and benefits of their current definition and what else they should include.

Regulation that balances choice and control with quality and safety - the consultation paper seeks feedback on how registration can be implemented in a way that maintains the unique benefits of platform services as well as how the Commission can facilitate a smooth transition.

Will other providers need to be registered?

There are some signs that the government is considering making registration mandatory for most NDIS providers, but this hasn’t been announced as a formal policy yet.

As many of you will know, the final report of the NDIS Review recommended that registration or enrolment be compulsory for all NDIS providers. In response to community concern around this recommendation, former Minister Shorten appointed a Taskforce to explore the issue of registration.

The Taskforce recommended that registration should be compulsory for most providers, with the exception of providers who support participants selfdirecting their supports and mainstream providers of off-the-shelf goods. The Taskforce also suggested quite a significant re-design of the registration system.

The government hasn’t responded yet to the recommendations of the Registration Taskforce or the NDIS Review.

Unread Reports

By Julie Cross

At the moment the NDIS is harming some participants, not helping them, following on the CEO of the NDIA, Rebecca Falkingham’s shock admission over costly medical reports.

Participants also complain that NDIA staff ignore what’s in these submissions, which take medical professionals hours to produce and which can cost hundreds if not thousands of dollars – with the taxpayer often picking up the tab.

Ms Falkingham confirmed these concerns when she said at Senate Estimates: “To be really frank about it, my staff can’t read 280-page reports that they get they can’t do that in that dedicated kind of way”.

And, when Liberal Senator Hollie Hughes, who has a child on the NDIS, told her that participants were frustrated that when they send in these reports “no-one reads them”, Ms Falkingham replied: “That’s right”.

It was a shocking admission and an insight into the inefficiencies within the scheme.

Ms Falkingham went on to say a lot of what is being written in these reports was not relevant under the NDIS act.

Now they tell us.

I’ve lost count of the number of people I have interviewed who have told me they have been asked to get yet another costly report.

Many of them have children with complex needs, hence those “280 pages”.

It is also an incredibly stressful process putting a person with disability through

assessments over and over again. Some participants are forced to pay for these reports out of their own pocket.

So the financial and the emotional toll is enormous, especially when the burden of proof is placed on people with disabilities and their families.

If what the NDIS staff are receiving is not relevant, why are people not better directed by the agency? Why is there not a template?

Ms Falkingham said she hoped a new streamlined support assessment tool due to be rolled out in September, will free up “all those allied health staff to be delivering services, not to be producing reports”.

Many people have their doubts because quite frankly, they have lost confidence in the system and so have the public who don’t trust the people who run it.

When I met the new NDIS Minister Amanda Rishworth in Canberra, before she was handed this poisoned chalice, she genuinely cared about improving the lives of people with a disability.

She needs to succeed, because at the moment the scheme is harming some participants, not helping them – and costing us all a fortune.

Julie Cross is the national social affairs reporter for the Daily Telegraph, Sunday Telegraph, Herald Sun, Courier Mail and Adelaide Advertiser. She writes about aged care, child care, women’s issues, disability, education, family and consumer trends and immigration.

WhatsUp

New Lego Characters

The LEGO Group has joined the Hidden Disabilities Sunflower to support and celebrate fans and colleagues with disabilities, conditions and sensory needs that aren’t immediately apparent.

The company is creating awareness through LEGO products, supported by employee training. The Sunflower has become a globally recognised symbol, allowing individuals to discreetly share that they have a non-visible condition that may require extra support, time, space, or understanding while going about their day whether that be in travel, shopping, at work, or in public spaces.

First toys to feature official Sunflower Lanyard

The LEGO Group is proud to introduce the world’s first toys to feature the official Sunflower lanyard, promoting awareness and inclusion across different age groups and themes. Developed with input from experts and individuals with lived experience.

☺ LEGO DUPLO® First Time at the Airport (10443) for ages 2+, helps toddlers navigate feelings about airports. It includes a child who is a Sunflower lanyard user, a teddy, suitcase, pilot

figure, security desk, and a movable airplane.

☺ LEGO® Friends Heartlake City Airport and Airplane (42656) for ages 8+, features Ryan, a university student wearing noise-reducing headphones and a Sunflower lanyard, along with eight other characters, a dog, passenger airplane, airport, taxi, and luggage cart.

☺ LEGO® Icons Tudor Corner (10350) for ages 18+, is the latest in the modular building range and centres around the Old Guarded Inn. It includes a neurodivergent female character who uses a Sunflower lanyard. The 3,266-piece set also includes a haberdashery shop, watchmakers’ studio and an apartment - where the character's lanyard is kept at the entrance, ready for her outings.

Fans will from also be able to customise minifigures using the Sunflower symbol at all 55 Minifigure Factories worldwide at LEGO House* and select LEGO stores, LEGO Certified Stores, LEGOLAND Discovery Centres, LEGOLAND Windsor and for US fans, also www.LEGO.com. This initiative aims to give fans additional opportunities to design the character they want to see themselves, a friend or family member represented as.

Queensland NEWS

Support for women with disability experiencing domestic, family and sexual violence

New videos are available to support Queensland women with disability impacted by domestic, family and sexual violence.

Women with disability and the Queenslanders with Disability Network helped develop the videos. They reflect our state’s diversity and include women who have specific communication or cognition needs.

Watch the videos and see other resources on the Domestic and family violence information and support for women with disability webpage.

Queensland Women’s Week

Queensland Women’s Week runs from 2 to 9 March 2025, with International Women’s Day on 8 March 2025. This year’s theme, March Forward celebrates the progress made by women who came before us and recognises the work yet to come to achieve gender equality. Queensland Women's Week recognises the successes and achievements of women and girls across Queensland.

Further information is available at Queensland Women's Week.

By Queensland Disability e-news

Get involved in the review of Australia’s Disability Discrimination Act

The Commonwealth Government is reviewing its Disability Discrimination Act 1992. The Act makes it unlawful to discriminate against people because of their disability in areas such as employment, education and housing. The review will consider:

• recommendations from the Disability Royal Commission

• other changes recommended by stakeholders.

Public consultation is starting in March. The Government is calling for people with disability, carers and advocates to get involved.

Skilling Queenslanders for Work

The first round of Skilling Queenslanders for Work 2025-26 is underway. Community-based not-for-profit organisations can apply for funding to deliver projects that support disadvantaged Queenslanders to gain the qualifications and skills they need to enter and stay in the workforce. Applications close 5:00pm 27 March 2025.

To find out more, visit the Department of Trade, Employment and Training’s website.

Arts Queensland Organisations Fund

Applications are now open for Arts Queensland’s Organisation Fund 20262029.

Four-year grants worth a minimum of $100,000 are available to support notfor-profit festivals focusing on live music. Applications close 10 March 2025. To find out more, visit Arts Queensland’s webpage.

WhatsUp Lifeboat?

Foundational Supports:

A new lifeboat or a disguise to capsize us?

Since its introduction in 2013, the National Disability Insurance Scheme (NDIS) has been a lifeline for many of us. Unlike the fragmented and inadequate disability support systems that came before it, the NDIS put people with disability in the driver’s seat and put into practice Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

However, while the NDIS has been a game changer for many, it has also created a support vacuum as not everyone can access it.

In 2023 NDIS Review (Working Together to Fix the NDIS: Independent Review of the National Disability Insurance Scheme) acknowledged this, noting that without other disability supports in place, the scheme is the only option available – often being described as the ‘only lifeboat in the ocean’.

To address, this, the NDIS Review recommended introducing Foundational Supports—a system of community-based services like peer support, home care, and assistive technology available to people with disability, whether or not they qualify for the NDIS.

In principle, this is something we need. We have always needed disability sup-

ports outside of the NDIS, so that people who don’t meet its strict eligibility criteria aren’t left to fend for themselves. But here’s the problem: Foundational Supports don’t exist yet.

While late last year, the Department of Social Services launched a national consultation to begin designing them, it is states and territories that will hold responsibility for their implementation, most of which have been pushing back against this – many resentful for originally pouring all their money into the NDIS, only to be told later that the services they originally provided, would likely need reinstatement.

For people with disability and government representatives alike, much of this is not surprising. When the NDIS Review recommended foundational supports, many of us knew there would be teething problems. But here’s the problem. While all of this is still being worked out, the NDIA has already started pushing people with disability off the NDIS – before there are any other lifeboats available.

Over the past several months, thousands of people with disability have received letters telling them their access to the NDIS is under review, with many being told they have just a finite amount of time to prove their eligibility or lose their funding. Between September and November 2023 alone, 7,487 reassessments were conducted, nearly 6,000 of them on seven – and eight-year-old children, nearly half of whom were removed from the scheme.

One key target here – Autistic children. While data available is limited, we know from anecdotal evidence, that as the continual and rapid changes roll out,

Foundational Supports

By Heidi La Paglia Reed

more and more Autistic people – especially children – are being pushed off or denied access to the NDIS, with claims that ‘early intervention’ has been effective or that access to ‘foundational’ programs will mean we won’t need it. We don’t ‘grow out’ of being Autistic. Our support needs don’t disappear because a bureaucratic process says they should. What actually happens when Autistic people lose access to support is increased rates of mental illness, burnout, unemployment, and homelessness.

So, what does this mean for the NDIS and this so called, cost cutting exercise of kicking Autistic kids off? Long-term, it is likely that it means it will not be cost cutting it all. The cost will just be shifted elsewhere.

Autistic and disabled children don’t need to be “prevented” from accessing the NDIS. They need support. And we need to start seeing this support as an investment.

When given the right support whether through the NDIS or other well-funded, community-based services children with disability grow into adults with disability who can fully participate in society, education, and work. Who get an education, pay taxes and contribute to the economy. Cutting those supports early doesn’t save money it just shifts the costs to other systems, like crisis mental health services, homelessness services, and the justice system.

We need to get this right. Foundational Supports are essential, but they must be done right. They must be co-designed with people with disability, in all of our diversity and not be rushed for political wins or short-sighted budget surplus claims. Additionally, for the time being

at least, Foundational Supports must exist alongside the NDIS not be used as an excuse to deny people access or push people with disability off the scheme before alternative supports through states and territories are available.

Heidi La Paglia Reid is an Autistic, disabled advocate, an NDIS participant and a member of the Every Australian Counts Steering Committee.

What are Foundational Supports?

NDIS Foundational Supports refer to services and initiatives designed to help people with disability, their families, and carers access early supports before they become eligible for an NDIS plan. These supports focus on early intervention, community inclusion, and capacitybuilding to improve independence and participation.

Key Features of Foundational Supports

1.Early Intervention – Services aimed at helping children and adults with disabilities develop skills early to reduce the need for long-term support.

2.Community-Based Programs – Programs that promote social inclusion, education, employment, and overall well-being.

3.Family & Carer Support – Resources and assistance to help families and carers provide the best support for people with disabilities.

4.Short-Term and Low-Intensity Support – Assistance that may not require a full NDIS plan but still helps individuals manage daily life and improve their capabilities.

WhatsUp Commission

NDIS Quality and Safeguards Commission

Press Release 24 January 2025

On 22 January 2025, the Federal Court of Australia ordered Valmar Support Services Ltd to pay civil penalties to the Commonwealth totalling $1,916,250 –the highest ever civil penalty imposed on a NDIS provider – when it found that Valmar put participants at significant risk, leading to the death of a participant. Valmar has also been ordered to pay the NDIS Commissioner’s legal costs. This case is a significant milestone for the NDIS and offers important lessons for the disability sector.

Valmar Support Services Ltd

Valmar is a not-for-profit, registered NDIS provider. The NDIS Commissioner alleged that Valmar systemically failed to provide safe and competent supports and services for three NDIS participants by:

• failing to train staff (at all) or ensure they had adequate qualification(s);

• failing to follow the requirements of participants’ dieticians’ plans (e.g. cutting up food into bite-sized pieces and ensuring the food was soft);

• failing to create meal plans without expert consultation, such as a speech pathologist.

Valmar engaged a dietician who requested updates to participant eating and drinking plans, and that Valmar engage a speech pathologist. However, Valmar never engaged a speech pathologist for

one of the participants and terminated the services of the dietician. In early 2019, Valmar engaged unqualified staff to create meal plans for participants without consulting a nutritionist, dietician or speech pathologist. The new meal plans created in early 2019 were inconsistent with the meal plans prepared by the dietician in 2017 which required food to be “soft” and “moist”. In February 2020, the eating and drinking plans were recorded as being “current” by unqualified staff with no authority or expertise to do so. In failing to attend to these requirements, especially in relation to participants who were known to Valmar to be at risk of choking, Valmar put participants at significant risk, leading to the death of a participant.

What

‘Failure to provide supports and services in a safe and competent manner, with care and skill’ looks like

At paragraphs 18 to 41 of the judgement, the Court steps through exactly how Valmar failed to comply with the relevant practice standards and the NDIS Code of Conduct. Those paragraphs provide helpful guidance in relation to:

• mealtime management

• failure to engage or follow advice from allied health professionals

• recordkeeping

• failure to train staff

• staff qualifications and training

• Valmar’s knowledge, over a long peri-

Valmar Court Case

od, of the participants’ needs and choking risks

Determining the penalty

At paragraph 71, the Court expressed concern about taking a mathematical approach to arriving at a penalty. The Court emphasised the seriousness of Valmar’s failure to provide staff training:

“It is not a case where there was some but inadequate training undertaken, rather none at all. There is no explanation for this. There cannot be. To understand just how serious this contravening conduct was, is by remembering the purpose of the scheme: To enable persons with disability, through the provision of tailored high quality and innovative support services, to exercise their autonomy and be included in the community. The entire scheme centres around the provision of high-quality support services. Such services cannot be provided, if the workers who provide them, are given no training. The whole scheme fails.”

In arriving at the $1.9 million penalty, the Court acknowledged Valmar’s cooperation throughout the proceedings and how it conducted its own internal investigation.

It is possible that NDIS providers could face higher penalties if they are faced with significant incidents and fail to adequately conduct their own internal investigations or cooperate with the NDIS Commission.

Safeguards Commissioner

The NDIS Quality and Safeguards Commissioner, Louise Glanville, welcomed the $1.9 million penalty imposed against Valmar by the Federal Court in relation to the death of an NDIS participant –the highest ever civil penalty imposed on a NDIS provider.

“The participant’s death is a tragedy that could have been prevented had appropriate procedures and staff training been in place. NDIS participants put their trust in providers to deliver safe and high-quality supports. We urge all NDIS providers to understand their legal obligations to ensure delivery of a high standard of services and supports.

“As the NDIS regulator, we will forcefully uphold the rights of people with disability to ensure they are provided safe and high-quality services and supports. Failure to meet these obligations is unacceptable and, in cases like this, will result in substantial penalties for providers,” Ms Glanville said.

In addition to taking strong, deterrent enforcement action when providers significantly fail in their compliance obligations, we also provide information and education to providers, and people with disability and their families, to help navigate what good practice and standards of care look like.

Resources on topic such as mealtime management, supporting safe and enjoyable meals, the NDIS Code of Conduct, and NDIS Practice Standards are available online through the NDIS Quality and Safeguards Commission website or the general enquiry phone line on 1800 035 544.

WhatsUp

Workplace and Workforce

84% of employers say offering adjustments for employees with disability expanded their access to talent. However, people with disability remain underrepresented in the workforce. How can HR help to bridge this gap?

Achieving equity in employment for people with disability is an ongoing challenge in Australia and around the world.

Despite advances in workplace technology and shifts in government policy around disability employment, people with disability are still significantly underrepresented in the Australian workforce – just 56% of people with disability are employed, compared to 82% of those without disability. This gap grows even wider at the senior and board-level ranks of an organisation.

Recent research conducted by Australian Disability Network (AusDN) highlights a disconnect between employers’ intentions and employees’ lived experiences when it comes to accessibility and inclusion.

Based on surveys of over 600 employees and employers, its findings showed over half of employees with disability (56%) fear being treated differently if they request adjustments to manage their disabilities.

“This fear may not be directly related to the person’s employer or their experience within their current organisation –it could also be based on their previous experience of stigma around sharing their disability information, or any number of other reasons,” says Emma Henningsen, Chief Experience Officer at AusDN, who lives with disability.

“This feeds into the need to create and

foster a psychologically safe culture where the provision of adjustments is normalised.”

“The important thing isn’t the kind of disability that they have, because you might find that you have three people with the exact same disability on paper who have wildly different adjustment requirements.”

Emma Henningsen Chief Experience Officer Australian Disability Network

Recruitment Barriers

Rigid or biased recruitment practices are often the first hurdle for people with disability in securing employment. Without an accessible hiring process, employers risk losing out on countless talented candidates in a tight jobs market, says Henningsen.

“Recruitment can be a challenging and awkward process for anybody, let alone for a person with disability,” she says.

“An example of the unintentional barriers that people throw up during those processes is having your online application not be accessible for a screen reader, or not having the opportunity to apply in a different way if you need to.”

These barriers are often more pronounced in larger organisations, where bulk recruitment processes sometimes fail to accommodate individual needs. With the use of AI in recruitment growing in popularity, the risk of bias is intensifying.

“AI is built with our biases, and humans are fallible creatures – we move through the world with inherent bias,” she says.

“AI face-scanning software could potentially impact people with facial disfigurements or people who are neurodivergent and who might not engage with the camera in the way that it’s designed for.

“That could potentially knock people out of the recruitment process, which is unfair. So there’s a lot of risk inherent in not having guardrails around these new systems.”

To ensure an accessible and unbiased recruitment process, HR first needs to help the organisation to normalise con-

By Phoebe Armstrong

versations around accessibility, she says. Whether an employee lives with disability or not, recruiters need to understand their needs up front.

“As much as you would ask someone what their dietary requirements are, ask what their accessibility needs are.”

Recruiters should be aware that asking about necessary adjustments during the process does not mean quizzing an employee on the exact nature of their disability – only the ways in which it impacts their ability to access and participate in the process.

Ensuring recruiters and managers are aware of this distinction and the need to keep bias in check is one of the most important hurdles for businesses to overcome in ensuring an inclusive hiring process.

Henningsen, who has a congenital limb deficiency, has experienced first-hand the inherent biases that can hold candidates back from employment opportunities.

“I’ve had a job interview where I’ve put my hand out to shake someone’s hand and they looked down, saw my hand, and then almost fell over. And I thought, ‘I am about to waste 40 minutes of my life – I am not getting this job.’”

WhatsUp Workplace

Small adjustments, big impact

Most employers are aware of their obligation under the Disability Discrimination Act 1992 to provide ‘reasonable adjustments’ to support employees living with disability. However, employers have a tendency to overestimate the time and costs associated with workplace adjustments, says Henningsen.

“When people think about an adjustment, they think they’ll need a ramp, or they’ll need a lift, or these large-scale things for people to be able to participate. And yes, in some organisations, that’s needed. But generally, the adjustments are things like additional time to look at your questions during an interview.

“For me, it’s as simple as having a trackball mouse, so when I’m reviewing things and spending a lot of time with my hand on the keyboard, the trackball mouse supports me to be able to navigate through a page without pain.

“Flexible work is a really key piece as well Working a compressed fortnight is another example of a workplace adjustment which helps me manage my physical health and get to appointments and things that I wouldn’t necessarily be able to do [otherwise].”

AusDN’s research shows adjustments are usually relatively simple and inexpensive. According to its findings, the most commonly requested adjustments are Working from home (87%), Flexible work hours (83%), Taking time off for appointments/taking breaks to help manage a condition (78%) and Perma-

nent workspaces instead of hot-desking (62%).

“Really simple things like that are actually really effective,” says Henningsen.

“And when you provide these simple things as par for the course – so, [for example], flexible work is just part of your process – you’re actually alleviating the pressure on your team members to have to ‘prove’ their disability or their situation to actually get what they need.”

Not only do these measures help to safeguard wellbeing and accessibility, they also directly benefit employers. 93% of employers surveyed reported that offering adjustments like these led to more equitable recruitment processes, and 84% said it expanded their access to talent.

Despite this, a lack of training around workplace adjustments is still holding many employers back. Over 30% of employers said their managers had not received any training on workplace adjustments.

“There’s some really fabulous training available for managers to upskill and to feel confident in asking those questions,” she says. “Because it can feel a bit stressful asking people what they might need…. [for some], it feels like it’s going to open up a box of worms that they don’t know how to navigate.”

To allay these concerns, managers should be encouraged to approach workplace adjustments with a curious mindset and without fear of making mistakes.

Organisational Accessibility

Embedding accessibility into your organisation

As well as upskilling managers in supporting team members living with disability, HR can also examine the policies and processes in place behind the scenes to identify and remove any systemic barriers to disability inclusion.

“You shouldn’t have to have a good manager in order to get what you need,” says Henningsen. “Have policies in place, have structures in place, and set those structures in stone, so that the next person can come in and there’s that continuity of practice for people with disability in your organisation to get what they need.”

These structures must also support every stage of employment, from onboarding to professional development and even offboarding.

Two of the most important items to have in place are a Workplace Adjustments policy and an Access and Inclusion Plan, she adds. Employers can learn more about essential inclusions in these policies via the AusDN website.

You could also consider having employees create a personal situation plan (see template here) to help their managers learn about any adjustments that are required and how their capabilities can be best utilised. This is worth doing for those with and without disability and goes a long way in creating an inclusive culture.

These structures will become even more critical as Australia’s demographics con-

tinue to shift.

“We’re an aging workforce. [Most] people are going to end up with some form of disability or another, or they’re going to become the carer of a person with disability,” says Henningsen.

“So we want to make sure that those processes are in place to provide adjustments and to support people to continue doing the good work that they’ve done for however many years within their organisations. You don’t want to lose good people because they acquire a disability.”

Sustainable inclusion requires moving beyond ad hoc solutions. By addressing recruitment barriers, normalising workplace adjustments and embedding accessibility into policy, HR practitioners can help unlock the full potential of employees with disability.

“Know that you’re probably going to get it wrong sometimes, but the key is to know that you’re doing something and to keep going.”

Emma Henningsen Chief Experience Officer Australian Disability Network

WhatsUp

(07) 4659 5662

Melanie is the owner, and she goes by Miss MJ. She is a mother of two, a defence wife, and a qualified primary school teacher with a graduate certificate in Autism Studies. She is currently finishing her Masters in Autism Studies. After her own children were diagnosed with Autism and she also identifies as neurospicy. This journey has made her a strong advocate for many families. Since 2009, she has provided individual learning and daily living skills support. In 2022, she expanded to offer group services. She had noticed that skills learned in therapy weren't always used in the community and wanted to change that. Originally, this centre was meant to be a safe social space for teens and young adults. But she quickly realised that people of all ages needed this. Now it is an all-inclusive space with programs for everyone. She welcomes anyone who shares a vision of what inclusion should be.

Miss MJ's mission is to create a nurturing, inclusive environment where everyone's unique strengths are celebrated. Miss MJ’s offers tailored support and resources to empower people, improve their well-being, and help them grow personally and socially, as well as breaking down barriers and ensuring everyone feels valued and supported.

Community

By Miss MJ

Miss MJ’s aims to be a beacon of hope and an innovative model for neurodiversity support. Miss MJ’s works with families, schools, and communities to create a culture of acceptance and growth. We embrace different learning styles and communication methods, teach essential life skills, and advocate for change. Miss MJ’s believes everyone can thrive, and Miss MJ’s is here to help.

Miss MJ’s has faced challenges as a new business, but we've also had many successes including family events and opening a consignment store showcasing local artists.

Another goal that Miss MJ’s has achieved is to provide a unique work experience to support those entering the workforce. We have had success with a number of participants who have moved on to explore new challenges.

We offer social clubs, facilitated groups, and a day centre service called Parallel Productivity. We cater to children ages 6 and up and adults of all ages. Social clubs are weekly, run by volunteers, and free for centre members. Facilitated groups are 8-10 weeks long, require a booking, and have a program to help participants reach their goals. Our Parallel Productivity Program is for teens 13 and over. Participants work on their own projects in a shared space, whether it's study, personal tasks, self-employment, or just getting mundane tasks done.

Our centre is open Tuesday - Friday 9am - 2pm to use independently for those with a centre membership.

It is very easy to become a centre participant. Just head to our website at www.missmjs.com and “Join Our Community”

Proudly offering NDIS Support Services, Plan Management, Support Coordination and My Aged Care Home Care Packages.

We would be honoured to help you or your family member with their support needs, simply give us a call on (07) 4633 4967 or send us an email to info@mcsnsw.com.au

There are a lot of Service Providers around town, but our main point of difference is our four main values that we live and breathe at Magenta:

 We keep our people at the heart of all we do

 We are professionals with heart

 We are part of our local community

 We think outside the box

Magenta Community Services was born out of our founder’s passion, desire and dedication to provide personalised and accessible services to those who need it most. The goal was to build an organisation with people at its heart.

Founded in the Northern Rivers region of New South Wales back in 2013, today Magenta has become instrumental for thousands of clients accessing the NDIS and My Aged Care services.

We now have offices in Toowoomba, Lismore, Gladstone and Tamworth.

When Magenta’s doors first opened, our services supported one person. Fast forward to today, and our organisation proudly supports nearly 600 people (and counting!).

While our numbers have grown, our goal has and always will remain the same: Provide heartfelt, compassionate professional services to as many people that need them. To achieve this Magenta are fully committed to helping our people

By Letitia Robarts

lead fulfilling, happy lives – without limitations. We are proud advocates for the disability and aged sectors, which is ingrained in our roots.

Our founder’s connection to the disability and community sectors stems much deeper than their more than 30 years of professional experience. It embodies their life work and the memory of their daughter. Born in 1992 with major health complications and diagnosed with a disability, Emily tragically passed away in 1996, leaving a legacy that laid the foundations for Magenta Community Services to be created.

Magenta takes pride in its foundation rooted in grassroots principles—a history characterised by compassion, kindness, and collaboration, all driven by a sincere commitment to truly impact the lives of others.

Our name Magenta is a huge part of our story, and it has a very colourful history, pun intended! A colour of universal harmony and emotional balance, magenta is spiritual yet practical, encouraging common sense and a balanced outlook on life. The colour’s intention is to create harmony and balance in every aspect of life; physically, mentally, emotionally and spiritually. Which we absolutely love.

Magenta influences our whole personal and spiritual development. It strengthens our intuition and psychic ability while assisting us to rise above the everyday dramas to experience a greater level of awareness and knowledge. If this resonates with you, please connect with us, be that via phone, email, website or our social media pages. Simply search for Magenta Community Services.

WhatsUp In March

WhatsUp In April

The Business Disability Awards team has announced an important update regarding the timeline for the 2024 Business Disability Awards. After careful consideration, the date for the next stage of the awards process has been adjusted to deliver an even more streamlined and effective evaluation experience for all entrants, nominees, and sponsors. The Board and Committee feel this new date aligns with the Awards mission, falling just two days after Global Accessibility Awareness Day.

The new date for the Awards Gala Dinner is Saturday, 17 May 2025.

The updated timeline will provide all participants with additional clarity and time to engage with the process, ensuring that the awards continue to celebrate and promote the most impactful achievements in disability inclusion across the business sector.

WhatsUp Community

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WhatsUp Executive Team

STEVEN PAULL President

COURTNEY CARROLL Editor

JESS WRIGHT Secretary

ANN PAULL Treasurer

PUBLISHER: Disability Media Association Inc (Australia) (DMAA)

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OFFICE: Paul Myatt Community Centre 11-15 Alexander Street Toowoomba (open Monday to Friday 9:00am-3:00 pm)

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E-MAIL: steven@bigdog.au

MANAGEMENT BOARD: Steven Paull (President) Courtney Carroll (Editor) Jess Wright (Secretary) Ann Paull (Treasurer)

CONTRIBUTORS: Bronwyn Herbertson, Sharon Boyce, Aidan Wilcock, Dean Gill, Jess Wright, Steven Paull and many others.

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WhatsUp

www.mycommunitydirectory.com.au

With Sarah Rossiter

Toowoomba Regional Council lit up city landmarks on Friday, 28 February 2025, as a show of support for all residents living with a rare disease or supporting loved ones who have a rare condition.

Deputy Mayor Cr Rebecca Vonhoff and Cr Edwina Farquhar, along with Council colleagues, supported the lighting campaign as part of Rare Disease Day promotions that will be marked across Australia and more than 100 countries across the world.

Cr Vonhoff said Council was lighting Toowoomba City Hall, the City Hall Annex and the Victoria Street bridge to join the campaign shining coloured lights on the promotional day run in conjunction with the Nerve Connection Foundation, among other partners.

www.whatsupindisability.org

“Lighting our landmarks is a symbolic show of support for people living with a rare disease, their families, carers, associated organisations and medical professionals who treat them.

“It is estimated there are more than 300 million people globally who live with a rare disease. We have people with rare diseases living in our Region and this is a way we can demonstrate our support for them.

“The day serves a community education role highlighting the lives of people with numerous medical complaints.

“The campaign also aims to alleviate feelings of isolation and many other emotions that are experienced by people living with rare diseases.

“We can light the way to move past taboos to focus on the people, not the disease.”

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