People often talk about disability services and support as if it is mainly about money, how efficient it is, or what changes we need to make. But if you look closer, there’s a deeper, more personal, and much more troubling issue: deciding who truly deserves help and why someone has to constantly fight to show they do.
In Australia, recent changes to the National Disability Insurance Scheme have really highlighted this problem. Stricter rules for who qualifies, less support, and using more automated assessments are all indicative of a move away from personalized care.
Instead, it seems Australia is heading towards a system that sorts people, puts them into categories, and eventually leaves some out. What was once meant to be support now often feels more like a close inspection. The issue isn’t simply what a person needs but whether they can persuade the system that their needs are important enough.
And it’s this idea of “enough” that starts to cause real problems. Disabilities don’t fit neatly onto a scale, but the systems often act as if they do. Some disabilities are easier for those making decisions to understand, while others are subtly questioned or downplayed. This creates a hidden ranking system where people are grouped not just by what they need, but by how clear their needs are to a person reviewing documents from afar.
These same patterns are also showing up in policy changes in the United States. For example, the “One Big Beautiful Bill” has to drastically cut funding and create new policies within Medicaid and Medicare, which include services like those provided through Home and Community-Based Services. This bill is intended to save a lot of money and require tougher eligibility and work requirements and more paperwork.
These changes are particularly impacting disabled people. What we end up with isn’t just a smaller system but one that attaches more stipulations to receiving care. This makes it harder to keep getting the care you need, creates more uncertainty, and means you could lose access more easily.
Advocates are warning that the impacts aren’t just about statistics. Cutting funds and adding more red tape means people lose benefits, have to deal with more paperwork, and find it harder to access care. This includes the home and community-based services that many people depend on to avoid institutionalization.
Practically speaking, this means people are losing the support they need. They are losing support not because their situations have changed. Instead, they are losing support because the system itself has become tougher to deal with and easier to get lost in.
I’m experiencing this firsthand right now. My hours for a Personal Care Attendant through MassHealth have been reduced. I’m currently getting ready to appeal that decision, collecting papers and trying to describe my daily life in a way that matches what they’re looking for.
The people who made this decision have never met me. They haven’t seen what it actually takes for me to get through a day with cerebral palsy. They don’t understand the constant effort involved in doing everyday things, or how support—like what programs such as HCBS provide—is often what allows me to be part of the world instead of being isolated.
This disconnect is what ties everything together. Whether it’s a computer program designing a care plan, a caseworker looking at files, or a new government rule changing who qualifies, decisions are more and more being made without truly knowing the people they impact.
Real-life experiences get reduced to forms, checkboxes, and rules you have to follow. And if something doesn’t fit neatly into those categories, it’s up to the individual to keep proving, over and over, that their needs are legitimate.
The appeals process itself adds yet another layer of work. It demands time, energy, and a lot of persistence—things many disabled people don’t have in abundance. This also brings uncertainty into every part of a person’s life. When your support can be cut or taken away based on an evaluation that doesn’t truly reflect your situation, it clearly signals that your access to help is never guaranteed.
Thinking about disability support mostly as a budget problem only makes these issues worse. Of course, these systems need to be able to last, but when money becomes the main focus, people start to be judged by what they use up instead of what they actually need. This change in thinking affects how policies are made and how decisions are explained. And it also changes how people are treated.
The deeper problem isn’t just about how things are managed; it’s about our culture. When support systems begin to separate people into “deserving” and “undeserving” categories, they stray from the idea that care is something we all share responsibility for. Instead, the weight falls on people to prove they are worthy, often to people who really don’t understand their daily lives. Living with a disability already means constantly adapting. It shouldn’t also mean constantly having to justify your needs.
Programs like the NDIS and HCBS were originally set up to provide support and ensure everyone is included. But when they turn into systems that block access, that initial promise starts to fade, replaced by something much more uncertain. We don’t just need to tweak policies; we need a complete change in how we see things. Support needs to be built on truly understanding people’s experiences. If we don’t have that, decisions will keep being made in ways that feel impersonal, and people will continue to pay the price for that disconnect in their daily lives.
Sources:
Filipczyk, Elena. “Gatekeeping Disability Support: NDIS, Being ‘Deserving’ of Help.” ABC Religion & Ethics, Australian Broadcasting Corporation, 30 Apr. 2026, https://www.abc.net.au/religion/gatekeeping-disability-support-ndis-being-deserving-of-help/106628420.
Ives-Rublee, Mia. “Federal Medicaid Cuts Would Force States to Eliminate Services for Disabled Adults, Older Adults, and Children.” The Center for American Progress, The Center for American Progress, 3 July 2025, www.americanprogress.org/article/federal-medicaid-cuts-would-force-states-to-eliminate-services-for-disabled-adults-older-adults-and-children/.