CW: Institulization
There’s a common thread in policy discussions on disability. Governments present cuts to home and community-based supports as difficult but necessary choices for the sake of long-term sustainability, even when the evidence shows those cuts make little difference to long-term spending.
Australia recently announced a decrease in the funding of social and community participation under the National Disability Insurance Scheme (NDIS). These supports allow disabled people to work, take classes, and enjoy community activities. They are what help make inclusion possible. However, projections already indicate that the long-term growth in costs to the NDIS will slow to sustainable levels due to wider structural changes. Reducing the amount of funding for community participation can lessen short-term spending, but it does little to reduce long-term spending.
This is an all too familiar story here in the United States. Home and Community Based Services (HCBS) provided by Medicaid have been underfunded for years. It is common for states to contemplate reducing service hours, reducing eligibility requirements, or changing programs in spite of decades of research that show HCBS reduces reliance on institutions, and nursing homes while also being less expensive.
However, there is a big problem with the system. Federal law requires Medicaid to cover nursing home care. But home and community-based services, the very supports that keep people out of nursing homes, institutions, and hospitals are optional. That difference matters a lot.
It means states can cut HCBS programs whenever money gets tight. These changes impact millions of people. I felt these impacts firsthand during the spring.
I rely on PCA services to help me with daily tasks. MassHealth did not inform me that anything had changed. Instead, I received a letter telling me that I had gone over my approved PCA hours, the approved hours I depended on.
On paper, it might have been just another budget cut. However, for me, it meant that I would lose the nighttime care I rely on. I spent almost two months fighting with MassHealth. Ultimately, I was successful, but the process made me very sad.
No one should have to spend months collecting paperwork, writing appeals, and demonstrating repeatedly that they require services or equipment to live. It was exhausting and served as a good reminder of just how unpredictable these programs are. When policymakers talk about cutting hours or streamlining programs, they’re really talking about taking away independence and security from people.
The similarities between Australia’s NDIS proposals and the pressures facing Medicaid are no coincidence. In both countries, community-based supports are often treated as optional, even though research consistently shows they are more cost-effective than institutional care. Cutting them doesn’t eliminate costs. It just shifts them onto family members, many of whom end up quitting their jobs in order to provide full-time care. What looks like fiscal responsibility on paper often turns into a financial crisis for family caregivers.
For disabled people, the stakes are real and frightening. Sustainable policies shouldn’t take away the support that allows people to live in their communities. The reality is that governments are not prepared to spend the money needed to make the system more sustainable, and that disabled people are considered a line item in a budget rather than the human beings we are.
Sources:
Bennett, Sam, and Owain Emslie. “Cutting Community Participation Budgets Isn’t Needed to Save the NDIS.” The Conversation, 20 July 2026, https://theconversation.com/cutting-community-participation-budgets-isnt-needed-to-save-the-ndis-287563.
Maniates, Hannah. “Why Did They Do It That Way? Home and Community-Based Services.” National Association of Medicaid Directors, National Association of Medicaid Directors, 16 Apr. 2024, medicaiddirectors.org/resource/why-did-they-do-it-that-way-home-and-community-based-services/.