A Message from Theo Braddy: We Cannot Fix What We Refuse to Define
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Hello again. This is Theo W. Braddy, Executive Director of the National Council on Independent Living, bringing you another message. This one I call “We Cannot Fix What We Refuse to Define”.
I recently logged off a high-level stakeholder meeting with a disturbing realization. People in the room were very smart. They were well-intentioned. They were responsible for implementing supports and services for people with disabilities, and yet they were making major decisions about Home and Community-Based Services (HCBS) without a shared understanding of what those services actually are.
The conversation moved quickly, but underneath it all was something more basic and more troubling. We were not speaking the same language. Core services were described in ways that did not reflect the lived realities of people who rely on them every day. Terms were used interchangeably, imprecisely, and sometimes incorrectly.
It became clear to me that this was not just a misunderstanding. It was a problem that needed to be examined.
HCBS is often treated as supplemental. Something added as medical care is addressed. That framing is deeply flawed.
HCBS is not convenient. It is about daily survival. It is about dignity. It is about control over one’s own life.
For people with physical disabilities, intellectual and developmental disabilities, mental health and other complex support needs, HCBS provides the assistance that makes everyday life possible: getting out of bed, preparing food, bathing, taking medication, getting to work, participating in the community, and maintaining relationships. Without these supports, living at home is not a meaningful option; it is an illusion.
Too many policymakers and system leaders use HCBS terminology loosely, or dare I say, incorrectly.
Caregivers are confused with medical staff.
Attendant care is mistaken for companionship.
Respite is treated as optional rather than essential.
Service coordinators and care managers are assumed to be administrative roles instead of lifelines.
When definitions are unclear, systems fail in predictable ways. Services are underfunded or cut entirely.
Caseloads become unmanageable.
Workforce shortages deepen.
Rules are written that ignore real life. And people end up institutionalized, not by choice, but by default.
This is how confusion becomes policy.
One of the most damaging examples of this confusion is the failure to distinguish between Direct Care Workers and Caregivers. These terms are often used interchangeably in meetings, policy documents, and funding discussions. They should not be.
They are not the same role.
They are not interchangeable.
And confusing them leads directly to bad policy, and worse bad outcomes.
There needs to be a shared starting point. If we are serious about community living, we must start by agreeing on what we are talking about.
If we cannot agree on what keeps people living at home, we should not be surprised when systems continue to put them into institutions.
Getting the language right is not optional.
It is the beginning of getting the system right.
Finally. People are not institutionalized because community living fails. People are institutionalized when we fail to understand what it requires.
This is Theo W. Braddy. Until we speak again. Bye-bye now.
Theo Braddy
Executive Director
National Council on Independent Living
About NCIL
NCIL is the longest-running national cross-disability grassroots organization, driven by and dedicated to people with disabilities. Since its founding in 1982, NCIL has represented thousands of organizations and individuals, advocating tirelessly for the human and civil rights of people with disabilities across the United States.
