To Whom It May Concern,
I’m writing to you as a neurodiverse person and parent of an adult son (26 years), who is diagnosed with Moderate Autism and a mild intellectual disability. I would first like to thank the Australian Government for its support through the National Disability Insurance Scheme (NDIS). This funding has enabled us to access a peer-appropriate support worker and social mentor for 7 hours per week across the two categories of social and community participation and capacity-building supports (core funding), both of which are direct targets of NDIS changes in this current bill.
Firstly, I would like to address the elephant in the room. In my opinion, any system that allowed for the states and departments to shift responsibility of supporting needs into NDIS, combining early intervention, every type of disability circumstances and mental health supports, bluntly created an overloaded system destined to fail. While I understand that systems make mistakes, my anger and motivation to write this submission stem from the Labour government’s lack of integrity towards the Australian people in pushing changes through parliament to divert the fallout. Combined with news sourced comments about neurodiverse individuals overwhelming the NDIS system. I feel the decision to significantly slash funding for social inclusion and some community capacity building, which is directly related to the core elements of autism spectrum disorder (ASD), constitutes a thinly veiled, subversive attack on specific funding streams that support neurodiverse individuals.
Yes, these categories of social participation are flexible, and in that flexibility is ambiguity. In our situation, it relates to social abilities that are constructed as naturally acquired and formed by independence in adulthood; however, for our family with ADHD, ASD, and anxiety, socially based challenges have required continuing support. I have only one son on the NDIS scheme, who, like many others in his situation, now refuses to access professional supports like counsellors or dietitians. I believe he suffers from professional intervention fatigue and an ever-present systematic expectation to achieve more and better outcomes. At the same time, as a young adult, he seeks to develop a sense of autonomy and normality in his own life, which compels him to reject his parents’ support to find a place in society. This is why funding for social and community participation, as well as capacity-building, has been of significant benefit. His support person is also a peer mentor who effectively models social skills and behaviours that help my son develop the ability to form meaningful relationships with others outside our family and, most importantly, within a youth related social culture. He also works with me to identify practical, real-life strategies that ultimately complement generalised professional advice.
At one stage, I would have spoken about his struggles as an individual to put a human face on a dehumanising system. Yet, out of respect for his authority and autonomy as an adult, I will not discuss his life’s successes, struggles, and failures. Unfortunately, he also lacks the capacity to understand the complexities of his own situation.
It’s a shame the NDIS is also unaware that we have developed informal, person-centred supports, as his plan has been rolled over for many years. NDIS does not really monitor success; it evaluates needs. This rollover situation reduced my fear of losing funding; it was a comfort to be unseen, as I’ve always felt the best way to keep your funding is to be quiet and stay under the government’s radar. With his review due later in the year, you can imagine my dread, given the current political and news climate. Whereas I certainly don’t have all the solutions, I do know that the current NDIS model promotes financial and support stagnation, creating a fear-driven, take-and-keep-as-much-as-you can system. Funds are allocated yet remain unused, and excessively stringent assessment criteria will not address these issues; they will reduce numbers but not improve the effectiveness of monies spent. I want to express that, overall, some of the policy adjustments and media coverage imply that
families, carers and service providers have approached the NDIS with an abusive, entitlement-based mindset. While there will always be some individuals with fraudulent intentions, this discourse should be openly discouraged and addressed by the government to clarify that, while the community’s needs have been overwhelming, they are genuine.
I urge the Prime Minister, Anthony Albanese, to reconsider this decision to slash community participation by 50% and to find other, more effective means to address the rising cost of the NDIS.
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Firstly, this area of NDIS offers effective and vital opportunities to develop real-life strategies for my son with the formation of a peer-appropriate social group and successful mainstream inclusion in the form of volunteer work with a large community organisation. But even more importantly, it offers people skills to make connections and form social relationships, which improves mental health and stems isolation.
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Redirects neurodiverse youth from becoming siloed and cocooned into make-believe worlds of gaming and obsessive internet usage as maladaptive coping strategies, developed from sincere social struggles, and neurodivergent driven interests.
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That social support from peers is essential in assisting neurodiverse individuals in navigating the complex social needs of youth culture, a situation where aging carers are unsuited.
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Surely, with similarities in participant interest and informal forming of social groups, a group hourly rate may enable NDIS participants and service providers to activate more cost effective, social participation that goes beyond a 1:1 ratio. If this ability already exists, then our service providers have not encouraged its use.
These specific changes in the social participation provisions of the NDIS bills, for me, imply the typical old governmental sidestep that circumvents honouring the World Health Organisation’s definition of disability, which includes neurodiversity, because they don’t have the financial capacity. If so, what’s the alternative?
As previously mentioned, I have lived experience of neurodiversity, combined with working as a community development worker in Aboriginal services, Leisure and Lifestyle in community aged care, and community art programs. This gives me lived expertise to make suggestions. When the government talks about mainstream inclusion for people with neurodiversity, I assume they are expressing confronting representations and socially constructed stereotypes of normality; ideologies formed from a dominant neurotypical culture. Honourable goals, but long-term commitment that requires significant counter-shifting in social discourses, challenging the mainstream paradigm of ableism and stereotypes that disadvantage people in a capitalist and socially driven community paradigm. Unfortunately, words like mainstream inclusion and person-centred care have now become marketable political and publicity statements that amount to communal gaslighting.
In contrast to the melting pot image, which governments for disability inclusion champion, only two essentialist funding categories exist: disability and mainstream. However, both categories contain untold numbers of different disabilities, ethnic and situational groups of individuals, competing for financial support. While the government holds fast on separating funding for neurodiverse people from the disability pool, this decision is also forcing us to compete in a larger mainstream context, deliberately ambiguous about how success will be achieved. My concern is that directing funding towards mainstream community services and groups without clear guidance will amount to nothing more than propping up these systems that have already proven to have inconsistent results. If I had found successful social inclusion in mainstream activities without a peer support person, in traditional disability services, or with mainstream providers, I would not have applied for and gained
success in the NDIS. The key element in our son’s mainstream participation is his social mentor, who acts as a bridge between his social disabilities and society. When you take away this support, the inclusive bridge disappears, and the rug has been pulled out from under us. I strongly suspect that any funding directed to mainstream pools will quickly be overwhelmed by the general community’s wants, needs, and issues.
I once again repeat, mainstream inclusion is an honourable ideology. It is not, however, a support system or strategy.
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I feel that, firstly, all NDIS participants should be entitled to social access funding when required, but I do understand that restrictions may be imposed.
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However, due to the high possibility of mainstream misdirection, any additional government funding directed to the scope of social participation should also stay within the NDIS system, as a form of guardianship.
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That a second funding stream be created, directly assessed and related to the needs of social deficiencies, which will support neurodiverse individuals and other people with specific social challenges and create the bridge to community participation.
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Lastly, if funding is transferred to a mainstream pool. Applications from current NDIS service providers/ community services/ or groups that have already successfully fostered informal disability inclusion within mainstream situations and activities, or created special interest groups, should have priority access to this funding, as an alternative to generalised, free-for all community funding applications.
I do appreciate the time you have taken to read this letter, and the continued funding from governments to our family that assists us in continuing to support our neurodiverse adult son through NDIS. This funding and his hard work have enabled his capacity-building, and his contributions to society through volunteer work, combined with regular peer mentoring for social inclusion, have served as an alternative home-based supported living strategy.
Your sincerely,