Guest blog from our friend Jo Booms

Episode 4: Agency Culture: The Continental Divide of I/DD Services

The Intellectual and Developmental Disabilities (I/DD) system was created to support people with I/DD so they can live happy, fulfilling lives. Yet some clients end up with fantastic lives while others live out their lives in miserable, system-created turmoil. What is the difference that allows some agencies to provide stellar services, given that everyone in I/DD services is working in the same system, with meager resources?

Agency culture makes or breaks clients’ lives. Let me give an example of how the two kinds of agencies differ:

When an agency has a culture of negativity, this is what they think and say and present to the world:

We are overwhelmed. We have clients who want real lives but we don’t have enough money/staff/resources to help them. Our agency started out great but pressures got high and people burned out. The staff have had decades of having to do everything with nothing and have become embittered. Our agency’s focus now is on controlling clients, families, and guardians to keep them from asking for more services that we can’t provide. They are demanding and willful when they should just be grateful for whatever we give them. Some clients, families, and guardians will shut up if we just slam them down a few times. If we give them what they want they’ll just ask for more, so we need to strike them hard. We’ll take away programs and misuse funding so it runs out before clients get what they need. Sometimes we get new workers who want to stand up for clients. If supervisors and other staff are abusive enough to these new staff members, they’ll learn their place. How dare they come into our agency and tell us how to treat clients? They don’t know the clients we have – our clients are out of control and giving them what they need just makes them more willful. Our agency has built a good reputation because we’re great at talking it up and persuading well-controlled clients to do likewise. We can’t let goody two-shoes staff members tattle on our abusive staff members. We need our staff to be abusive so the clients will get under control. Maintaining our outward image of being progressive is vital, so we must keep talking ourselves up no matter what’s really going on. It’s not our fault we can’t do what we say we do. We have to work in the system we have. It’s irreparably broken; there’s no point in trying to fix it.

When an agency has a culture of positivity, this is what they think and say and present to the world:

Wow, there’s so much that needs to be done, and so much we want to do! Our resources are limited, but if we brainstorm and use teamwork, we’re confident we’ll find a way to help all our clients have meaningful lives. We’ll encourage all our staff to think creatively - the more creatively, the better! Another great idea is always just around the corner. We have awesome clients. Some clients will have challenging factors, but we’re confident we can provide the supports our clients need. We know that we’ll make mistakes. When we do, we’ll acknowledge them and figure out how we can improve. We’ll encourage clients and staff members at all levels to grow as people, improving by continually learning from each other. We’ll help clients find activities and hobbies that heal their pasts, energize their presents, and inspire their futures. We’ll help clients who want a job find one they’ll thrive in. When we have clients who can self-advocate, we’ll support them in speaking out, even when they’re critical of us – this is their system; we’re just the facilitators. Learning to better facilitate is a vital part of our job. People with I/DD are why we’re here. As our growth fosters theirs, theirs fosters ours, to the benefit of them, us, and our society.

Which way will a person with I/DD’s life go?

Place a person with I/DD in an agency with a negative culture, and their life will go one way. Place the same client in an agency with a positive culture, and their life will go another.

My friend, Jeanie, received services through Colorado’s I/DD system for about 46 years. She started out in an agency with a negative culture, where her self-advocacy got her labeled an out-of-control troublemaker. In 2008, she switched to an agency with a positive culture. Those last 13 years of her life were rocket-fueled. She grew in confidence and became a certified disability advocate, serving on the board of directors for the Colorado Cross-Disability Coalition. Her advocacy led to improvement in Colorado Medicaid assistive technology coverage. She was a paid employee of The Resource Exchange, where she helped train case managers. The positive agency changed Jeanie’s life.

Jeanie changed minds.

Jeanie changed hearts.

Jeanie changed Colorado.