Burdens and Barriers

From Dylan Alcott being awarded Australian of the year, to a shift in leadership, to the Royal Disability Commission, or jarring commentary of feeling blessed, conversations around disability are gaining momentum and all for significant reasons.

Recently, leadership discussions, and decisions surrounding the National Disability Insurance Scheme (NDIS) have become increasingly murky. Specifically, the consistent threats of funding cuts and rising costs or NDIS services. In July, the CEO of the National Disability Insurance Agency, Martin Hoffman officially stepped down. With change brings opportunity, and while newly appointed NDIS Minister Bill Shorten is yet to announce the new replacement, there is hope for disability representation within this role.

Reflecting over the progression of policy for disabled Australians, there has been growth in protecting the rights of people with disability within our society. These include the 1992 Disability Discrimination Act and comitting to the United Nation’s Convention on the Rights of Persons with Disabilities in 2007. 

Legislation of the National Disability Insurance Scheme (NDIS) passed almost a decade ago, under the Gillard Government to support Australians who have a significant or permanent disability. The scheme launched with one billion dollars, consists of an individual tailored program with the aim to enhance the quality of life of disabled people. Through the funding provided, participants of the NDIS can access resources and services to achieve their goals. 

However, with the NDIS as one of the major priorities for this underrepresented community, there is a concern that the scheme’s sustainability and accessibility may fail in providing all disabled people with a greater quality of life.  

According to the NDIS website, there are an estimated 4.3 million disabled people within Australia, and the NDIS aims to fund services and support a total of 500,000 people. This equates to just under 12 per cent of the total number of disabled Australians, leaving 88 per cent of people without NDIS funding. 

While the NDIS aims to take a “lifetime approach” in supporting participants, it is uncertain if this strategy will be successful in addressing each type of disability that falls under this broad umbrella.  

Is (they/them), a young disabled person, has found accessing the NDIS plan increasingly challenging, significantly due to the fact the scheme neglects mental health.

“I’ve applied multiple times and been rejected multiple times … mainly because one of the criteria of the NDIS is to have a ‘permanent disability’, to receive the funding. I do have a permanent, significant disability, but the way they determine what counts is very limiting.” 

“The NDIS don’t tend to view mental illness as permanent, because there are a lot of treatments available. Even if treatments haven’t been successful. My psychosocial disability is very much permanent, but they have determined that I might be be better one day, so therefore I am not eligible for funding.”

Expenditure by the NDIS towards diagnosis treatments, inpatient care, medication, and rehabilitation for mental health, is excluded from the scheme. According to the NDIS guidelines, psychosocial disability is covered by the mental health system. With 3.4 million Australians accessing professional mental health services between 2020-2021, this is a major underestimation of the importance of mental health care for people, its permanency and urgency. 

Juggling these compromises for essential care can become compounding for a disabled person. This limits the central delivery of the NDIS for participants “choice and control” to develop agency over their plan. For Is, these can include prioritising finances for medication over professional care due to a lack of NDIS financial support. 

Is, Image Courtesy of the Foundation for Young Australians

“Do I book that specialist appointment, or do I get my medication for the month? Usually, I have to pick my medication. I have to make those choices, which a person shouldn’t have to make. It’s very much the norm for disabled people to have to prioritise elements of our support.”

The inability for accessibility and assessment is not the only growing concern for the scheme. 

Jason McCurry (he/him), Youth Leadership and Development Officer at Children and Young People with Disability Australia (CYDA), describes the emotional and financial fatigue for young participants.  

Image courtesy of Jacob Gamble

“Getting access is the biggest challenge. There’s a lot of barriers involved in the process, the eligibility criteria, the costs around diagnosis, support letters from specialists. It is lot of complex administrative burdens. Especially explaining your disability and needs over and over again. We need to move towards a consistent funding model and broaden the eligibility criteria. There needs to be more flexibility within plans – no two people have the same needs for support and services.”

Working towards addressing these breakdowns within the current health and medical system, CYDA are hosting young their second National Youth Disability Summit. Through funding, CYDA has been able to run ground level youth engagement programs and events for young disabled Australians, including the introduction of the Summit. This year’s Summit, has a strong focus on intersectionality and key themes of Education, Advocacy, Medical System, Diagnosis and Emotional Fatigue of Disability.

 COVID-19 is not a primary topic for the Summit, but Jason trusts it will become a focus due to changes in the health system. 

Image Courtesy of CYDA

“The Australian media has definitely moved on, and the population has moved on from the virus. For a lot of immunocompromised people and those who have anxiety about COVID-19, the pandemic is still real for a lot of people with disability. There are large issues that have been heard around telehealth no longer being funded, as now the ‘pandemic is over’. Things that were working for people with disabilities, have now been taken away from them.”

With the aim to make serious and extensive policy reform through the Summit, CYDA continues to take action to uphold the rights of disabled people and increase their life opportunities. CYDA’s strategic plan empowers their disabled young people, through their drive to ‘Lead Changes in Community Attitudes and Aspirations’ and ‘Call out discrimination, abuse and neglect’. 

The latter is the focus for the current Disability Royal Commission (DRC). As with every inquiry there is anticipation for vital change and reform. Jason, who has been supportive to participants of the DRC, is trusting these systemic cycles of exploitation will be dismantled.  

“People have heard horrible things they couldn’t believe could occur in 2022. At the end of this investigation are the recommendations that are given that can enforce changes, to change the lives of people with disability. And that’s what we are hopeful for. We’re optimistic something this big can make major change for future generations and ensuring that people don’t have to go through these systems of discrimination, abuse and neglect.”

The outcome of the DRC will not be announced until the end of September 2023, however, with new decision makers, comes powerful change and prospects to improve our communities. In the past month, a new Prime Minister was appointed and Social Service Minister (Amanda Rishworth). Prior to the election, Labor released their Disability Plan, which states their commitment to getting the NDIS back on track. Like many advocacy organisations working within the disabled space, Jason and CYDA are expectant for a solution-focused change.

“There were some great promises within that plan and we are optimistic and hopefully they do lead to better lives for all Australians as soon as possible. The momentum looks good if they begin to deliver on these key points and we will continue to hold them accountable to these and advocate.” 

Image courtesy of Jamie Rodgers

In addition to introducing greater infrastructure, society continually needs to work towards greater representation, visibility and recognition of disabled people from Parliament to the workplace. Notably, this year’s Australian of the Year was awarded to Dylan Alcott, a paraplegic, and previously, Grace Tame who is autistic received this honour. 

For Jason, seeing this visibility is transformative and empowering not only for young Australians but to all parts of society. This growing representation is shifting societies conversations and perspective by breaking down barriers and stigma towards disability and creating inclusive space within our offices, sports teams and social scenes. 

It is through these important and significant milestones, we can be hopeful that Australia is undertaking necessary growth towards a trajectory of improved inclusivity and equality. 

To become involved with Children and Young People with Disability Australia (CYDA), check out their opportunities page, social media. Or visit their website to sign up to CYDA e-News. 

WORDS: BRIDGET KELLY
PHOTOGRAPHY: CYDA, JACOB GAMBLE, THOMAS FENG, JAMIE RODGERS, STEVE FANSTONE, FOUNDATION FOR YOUNG AUSTRALIANS