Bianca Freeman Bianca is a 19-year-old on the severe end of the intellectual disability spectrum. She has recently become the focus of increasing anger and disappointment with the NDIS. Bianca needs a lot of assistance in communication due to her non-verbal condition. More than that, she is utterly dependent on her family and the NDIS to take care of her with basic daily tasks. Bianca’s mother, Aimee Freeman, has been fighting tooth and nail to get the NDIS to learn more about what Bianca needs. She is especially keen on tackling the new obstacles they’ve encountered this year.
The family’s struggle intensified when Aimee requested a review of Bianca’s $60,000 annual plan due to changes in their circumstances. Aimee credits the advocacy and community that allowed Bianca to study at TAFE and get involved with a social group. She’s concerned about the adequacy of the help now being offered. What she worries about and what you might not know is that without the appropriate support, Bianca’s independence and quality of life will be deeply restricted.
Limited Understanding from NDIA
The National Disability Insurance Scheme was designed to provide critical care and support for disabled Australians. Yet as many families will attest, the National Disability Insurance Agency (NDIA) doesn’t seem to be well versed in the nuances of individual disabilities. Just the other day this happened to Aimee after a conversation with an NDIA planner. The planner suggested that Bianca travel independently in public transport to Centrelink to meet with a job coach.
“If anyone who has met Bianca was to suggest that, they would understand how inappropriate that is,” – Aimee Freeman
Aimee described the experience as overwhelming, stating, “I was essentially ambushed … the call lasted about seven minutes and there was no conversation around what Bianca’s needs actually were.” This absence of individualized attention is nothing short of alarming. It further undermines the NDIA’s narrative of being able to accurately assess and meet the diverse needs of people with disabilities.
Naomi Anderson, a member of the national disability rights advocacy group ADAPT, echoed those frustrations from across the community. “What we’re seeing is anguish. What [participants] are describing is hostility and neglect and distress,” she stated. I know how frustrating many families have been feeling with the NDIA. Workers say the government organization cares more about controlling spreadsheets than giving people the support they need.
Legal Action and Advocacy
So now Bianca’s family is having a hard time getting the support she requires. In light of these continuing hardships, they have made the painful decision to sue the NDIA. They feel like the decision-making around Bianca’s care is overwhelming and confounding. They say these decisions overlook her special requirements.
Aimee shared how destructive this process has been on her family’s psyche. “It has been extremely exhausting … and time consuming,” she admitted. It goes without saying that their needs are acute. Aimee worries that eventually she’ll be forced to leave her teaching job altogether if she can’t find adequate support for Bianca, in which case she would need to provide full-time care.
As they work their way through this confounding system, families such as the Freemans keep pushing for improvement. Anderson agrees it’s critical to understand the unique needs of your participants so you can make decisions based on whom you serve. “People are too afraid to do everyday things because they don’t know how long their funding is going to last … and they feel punished for trying to live an ordinary life,” she explained.
The Future of Support
The Freemans’ story exposes a fundamental flaw in the NDIS structure. Thousands of families, every day, are trying to figure out how to provide care while allowing their loved ones independence. Bianca enjoys simple things in life such as a good movie or puzzle. Even with this freedom and flexibility, her ability to greatly enjoy these activities is conditional on the support she gets.
Aimee is focused on making sure there is a future for Bianca which doesn’t just rely on her parents. “I’m trying to think about her future, and I think [the NDIA] should be thinking about her future as well,” she stated. The family’s hope is to establish a more stable foundation that promotes independence while ensuring that Bianca’s needs are met.
The legal fight continues. You’d better believe they’re committed to fighting for Bianca and everyone like her who’s caught up in the NDIS system nightmare. Naomi Anderson summed up the situation succinctly: “The NDIA is here to implement a scheme that allows people to access the supports they need, not to fight them all the time.”
