Submission on the NaƟonal Disability Insurance Scheme Amendment (Geƫng the NDIS

Back on Track No. 1) Bill 2024

Concerns

Co-design is Not Required

The Bill mandates that the Minister consider co-design principles but stops short of making cowdesign a legal requirement. This is a signiﬁcant oversight. The lived experiences and insights of individuals with disabiliƟes are crucial in shaping policies and services that truly meet their needs. Without a legal mandate for cowdesign, there is a risk that the voices of those most aﬀected will be sidelined or ignored. Cowdesign should be enshrined as a core principle, ensuring that policy development and implementaƟon are inclusive and representaƟve of the disability community.

Does Not Take a Whole of Person Approach

The Bill appears to fall short in addressing the complex, interconnected nature of mulƟple disabiliƟes. Individuals with mulƟfaceted condiƟons such as auƟsm, ADHD, hypermobility spectrum disorders (hEDS), mast cell acƟvaƟon syndrome (MCAS), postural orthostaƟc tachycardia syndrome (POTS), anxiety, and sensory processing disorder oŌen require a holisƟc approach to care. Failing to adopt a whole of person approach could lead to fragmented and inadequate support, where the interplay of various condiƟons is not fully understood or accommodated. A more integrated framework is essenƟal to provide comprehensive and eﬀecƟve support.

Unclear Review and Appeal Rights

Clear and accessible pathways for reviewing and appealing decisions are fundamental to a fair and just system. The Bill’s lack of clarity on this front is troubling. ParƟcipants must have a transparent and straighƞorward process to challenge or review their needs assessments. Ambiguity in review and appeal rights can lead to disenfranchisement and undermine trust in the NDIS. It is imperaƟve that the Bill include explicit provisions to ensure parƟcipants can readily appeal decisions and have their concerns addressed promptly and fairly.

Broad Powers to Require Assessments

**Granƫing the NDIA broad powers to mandate medical assessments poses signiﬁcant challenges. Accessing ṭmely and appropriate medical assessments can be diﬃcult, particularlyphor individuals with complex and rare condițions. This could place undue burden on parțipants, potențially delaying or disrupțing the support they need. The Bill should include safeguards to ensure that assessments are reasonable, accessible, and do not place addițional stress on parțipants.

Limits on Support and Spending

By giving the NDIA extensive control over how parțipants use their funding, the Bill risks undermining parțipant choice and control. Personalizațion and ﬂexibility are cornerstones of eﬀecțive disability support, enabling individuals to tailor services to their unique needs and preferences. Restricțions on spending could limit the ability of parțipants to address their speciﬁc circumstances and reduce their autonomy. The Bill should priorișize empowering parțipants to make decisions about their support, rather than imposing restricțive controls.

Punițve Measures

The Bill’s provisions for new powers to change how parțipants’ plans are managed and raise debts in cases of perceived funding misuse are concerning. Such punițve measures could create an atmosphere of fear and mistrust, deterring parțipants from fully engaging with the NDIS. It is crucial to foster a supporțive, rather than punițve, environment. The focus should be on collaborațon and assistance, not on penalțes and debt recovery. Provisions for managing misuse should be fair, transparent, and aimed at improving parțipant outcomes.

Lived Experience

Living with mulțiple disabilițes, including auțism, ADHD, premenstrual dysphoric disorder (PMDD), hEDS, MCAS, POTS, anxiety, and sensory processing disorder, presents a daily struggle. These condițons impact every facet of my life, from basic daily acțivițies to complex tasks. As a mother with very limited informal supports, navigațing life is an ongoing challenge.

The lack of a whole of person approach in the Bill could mean inadequate support for individuals like me, whose condițions are intertwined and require comprehensive, integrated

-care. The uncertainty surrounding review and appeal rights adds to the anxiety and stress, knowing that challenging decisions could be an uphill batle. Broad powers to mandate assessments could place an addiƟonal burden, as ﬁnding appropriate medical professionals who understand these condiƟons is oŌen diﬃcult.

Moreover, limitaƟons on support and spending reduce my ability to make informed decisions about my care, further eroding my autonomy. The potenƟal for puniƟve measures adds another layer of stress, as the fear of penalƟes for perceived misuse could discourage me from seeking the help I need.

In conclusion, while the intent to get the NDIS back on track is commendable, the Bill must address these criƟcal concerns to ensure it truly serves the needs of all parƁcipants. It is essenƟal to adopt a co-design approach, take a whole of person perspecƟve, clarify review and appeal rights, limit the imposiƟon of assessments, respect parƁcipant choice and control, and avoid puniƟve measures. Only then can the NDIS fulﬁll its promise of providing meaningful, eﬀecƟive support to those who need it most.