This story was provided by the Human Resources Center of Edgar and Clark Counties and is published by the Clark County Post as a community submission.

Local nonprofit helps clients navigate a system that too often talks around them — and keeps pushing until they find care that actually listens.

PARIS, IL — For individuals living with intellectual and developmental disabilities, navigating the healthcare system can be an exercise in invisibility. Appointments happen. Decisions get made. And sometimes, the person at the center of it all is the last one anyone speaks to.

At the Human Resources Center of Edgar and Clark Counties (HRC), that is not acceptable — and when it happens, staff do something about it.

Michael is one example. Currently receiving Community Integrated Living Arrangement (CILA) services through HRC, Michael’s path to stable, effective care was not a straight one. His story is not primarily about medication or diagnosis — it is about what happens when someone finally insists that a person be treated as a person.

Spoken About, Not Spoken To

For a period of time, Michael received services from providers that, while perhaps well-intentioned, were not delivering care in a way that centered him as a person. One pattern that stood out was how some psychiatric providers handled appointments. Rather than speaking directly to Michael — asking him how he was feeling, what was bothering him, what he hoped for — some directed nearly all of their questions and conversation to the HRC staff accompanying him.

Michael sat in the room, present but peripheral, as decisions about his own health and wellbeing were discussed around him rather than with him.

HRC staff found this unacceptable — and they said so.

“Every person we support deserves to be spoken to, not spoken about,” said one HRC staff member. “When a provider looks past the individual and only talks to staff, that sends a message — and it’s not a good one. Our job is to make sure Michael’s voice is at the center of his own care.”

That expectation — that Michael be spoken to directly, listened to genuinely, and treated as an active participant in his own healthcare — became the standard HRC held for his care. Staff were present at appointments not simply to provide information, but to advocate. To redirect conversations back to Michael when providers talked around him. To make clear, professionally and persistently, that this was his appointment, his health, and his life.

Keeping At It Until It Was Right

Not every provider was the right fit — and HRC did not pretend otherwise. When a provider’s approach wasn’t working for Michael, the response was not to adjust expectations. It was to keep looking.

Finding a psychiatric provider who would truly communicate with Michael — who made eye contact, asked him questions directly, and listened to his answers as the most important information in the room — took time and persistence. But that is exactly what HRC staff committed to.

When Michael was finally in a room with a provider who talked to him rather than about him, the difference was immediate — and it changed everything about his care. For the first time, he was able to describe what he was experiencing in his own words and have those words be taken seriously. That direct communication opened doors that a hundred clinical observations, passed through staff as intermediaries, could not.

Getting to an effective medication — something that had been elusive for a long time — became possible not because the data finally got better, but because Michael finally got heard.

“We weren’t looking for someone who would just accept our notes,” said one HRC staff member. “Every provider takes staff notes. We were looking for someone who would actually talk to Michael — who would treat him like the expert on his own experience. Because he is.”

That shift — from managing Michael’s care to genuinely partnering with him in it — is the heart of what HRC’s IDD services are designed to do.

The Way We Talk About People Matters

For HRC, providing excellent services and treating people with dignity are not two separate things. They are the same thing. And part of that dignity is found in something as seemingly small as the words we choose.

Michael is a person who has an intellectual disability — not “a disabled person,” and certainly not defined by his diagnosis. That distinction is what advocates call person-first language: putting the person before the condition. A person with a mental illness, not “a mentally ill person.” A person living with autism, not “an autistic.” An individual receiving services, not “a client case.”

Let’s be honest about something.

A lot of us are exhausted by the conversation around language. It can feel like there is always a new term to learn, an old one to retire, a way we have been saying something our whole lives that is suddenly wrong. The list keeps growing. The rules keep shifting. And at some point, many of us throw up our hands and wonder if we are ever going to get it right.

That frustration is valid. HRC hears it. And here is what HRC wants you to know:

This is not about political correctness. It is not about scoring points or following a script or avoiding criticism. Person-first language is not a purity test, and nobody at HRC is keeping score.

It is about something much simpler, and much more important: it is about caring enough about the people around us to try to communicate in a way that reflects their dignity.

“We’re not asking people to be perfect,” said one HRC staff member. “We’re asking people to care enough about each other to try. When you put the person first — in the way you talk about them, in the way you sit with them at a doctor’s appointment, in the way you fight for them to be heard — you are telling them something. You are telling them they matter. That they are more than their diagnosis. That they belong here, in this community, in this conversation.”

The words we use shape the way we think. And the way we think shapes the way we treat people. When providers in Michael’s life talked about him as though he were not in the room, that was not just a language problem — it had real consequences for his care. When HRC staff insisted on a different approach, the words changed. And so did the outcomes.

Person-first language is not about perfection. It is about intention. It is about pausing — even for a moment — to ask: Am I communicating in a way that reflects the dignity of this person? HRC believes that question, asked sincerely and answered honestly, is one of the most powerful things any of us can do — in human services, and in ordinary life.

Meeting People Where They Are

Michael’s experience reflects a broader truth about quality IDD services: good outcomes rarely happen by accident. They are the result of intentional advocacy, a refusal to accept care that falls short of genuine respect, and a willingness to keep pushing until the right supports are in place.

HRC offers a full range of services for individuals with intellectual and developmental disabilities, including:

Residential Services

• CILA (Community Integrated Living Arrangements) — 24-hour support in a family-like home environment
• ICILA (Intermittent Community Integrated Living Arrangements) — flexible, intermittent support for individuals living independently or with family

Community & Day Services

• Community Day Services — skill-building, socialization, and community inclusion activities
• Group Respite — group activities for individuals with IDD or related conditions, designed to promote socialization and reduce caregiver stress; youth respite available for students in 6th grade and older during school breaks and closures

Employment Services

• Supported Employment — ongoing coaching and support for individuals placed in competitive community jobs
• Community-Based Employment — community job placement with individualized support
• Customized Employment — job development tailored to an individual’s unique strengths and interests
• Work Training Services — paid, non-competitive work training activities for individuals building job readiness
• Vocational Development / Pre-Employment Training — exploration of vocational interests and skill-building as a first step toward employment

Home & Community-Based Services

• Personal Support Workers — trained HRC staff providing in-home support for daily living skills and community activities
• Home-Based Services / Self-Directed Assistance — support for individuals and families navigating home-based funding, hiring personal support workers, maintaining Medicaid benefits, and medical and housing advocacy

Assessment & Referral

• Assessment and Referral Services — individualized needs assessments and connections to appropriate programs and services

These services can be accessed by calling HRC at 217-463-3076 and requesting more information. In most cases, an assessment will be the next step toward accessing services.

For more information about HRC’s IDD services, visit their website or stop by 753 E. Court St., Paris, IL 61944.

HRC — Serving Edgar & Clark Counties Since 1969