Tales from a Backyard Front: Experiences & Insights from Colorado’s Intellectual and Developmental Disabilities System

Blog by guest blogger Jo Booms

As we've seen, the easiest way to work effectively with someone with an intellectual or developmental disability (IDD) is to become a reinforcer. Frequently in the IDD system, however, direct care workers aren't allowed to hang out with the person to build trust in a non-hurried, no-stress way. The emphasis is instead on the new direct care worker immediately running programs with the person with IDD or caring for them in very personal ways despite the worker being a total stranger. It's no wonder that trust issues arise. As necessary as the services that the IDD system provides are, they are by nature unavoidably intrusive. The more trust there is between direct care workers and clients, the less invasive and threatening the interaction feels.

Everyone does everything better in environments they find respectful and non-threatening, so the IDD system should have time for trust-building built into direct care workers' jobs. Unfortunately, this isn't the case. Instead, the emphasis is on "efficiency," meaning that concrete results must be documentable during each 15 -minute increment that the direct care worker and the person with IDD are in contact. This emphasis on documentable work completely overlooks time for the worker and the person with IDD to just get to know one another. It's hard to document something as amorphous as trust building. (Please note that the last thing any person with IDD needs is a program to build confidence in their direct care workers; if it's not something that develops naturally, it's not going to work.) Direct care workers need the opportunity to build trust with the people with IDD they work with to avoid continually working through a medium of distrust.

Working through a medium of distrust makes it hard to get anything done, and especially hard to get answers when a client is upset. Many years ago, as a direct care worker who'd hit the ground running, I knew something in the day program environment was triggering a woman with IDD, Agnes*. I was trying to figure out what it was. Agnes had grown up in an institution; anything might be frightening her. I took as much trust-building time as permitted with her, but each time I asked her about her background, she would reply, "I don't know." Agnes was high-functioning and had a great memory. Her answer was an evasion. She was shutting the conversation down out of fear of how a staff person would react. It finally occurred to me that no one had ever explicitly told Agnes she had a right to keep some information private. I told her that if I ever asked a question she didn't want to answer, she could say, "I'm not telling." It's counterintuitive, but this simple, trust-building permission is often the key to the proverbial kingdom.

Once Agnes knew she had a concrete right to privacy (not just the nebulous one mentioned in her Individualized Plan) and that staff would honor it, conversations between us felt much less threatening to her. She became much more open. It turned out that the Velcro straps we used to keep another client from rolling off her positioning wedge reminded Agnes of spending the majority of her time in five-point restraint at her old institution. Because she now saw the other client secured to the positioning wedge, Agnes was afraid of being strapped down again, too. My supervisor and I rebranded the Velcro wedge straps as "seat belts." We showed Agnes how they were being used to keep the wedge-using client from falling and being hurt rather than as straps used to hold someone down as punishment. Agnes was much more comfortable in the day program environment after this. It showed in her work and attention to task.

The time taken to work through a medium of trust is something the IDD system needs to allow. In truth, there's no efficiency to working with a client who is balking because they haven't had a chance to build confidence in the workers who surround them daily. After all, working with people with IDD isn't an assembly line. You're helping them to heal their pasts while building present skills that will help them make their future dreams come true. Trust is just another one of those skills, and practicing it takes time. People with IDD have just as much right to their fears as anyone else. Figuring out those fears and resolving them is an efficient use of direct care workers' time. It's also part of treating clients with dignity - more on that next time, so stay tuned and stay dedicated!

*Name has been changed to protect confidentiality