By Jo Boom

Episode 3: Life Improvement: A Cost/Benefit Analysis

Welcome back!

In Episode 2 of Tales from a Backyard Front, we looked at a situation in which there was a gap between who the IDD system thought a man with IDD was and who he really was as a person. This misunderstanding led to the IDD system being in conflict with the man, Jorgé, instead of helping him. The IDD system has a long history of assuming that people with IDD are difficult by nature. When Jorgé’s agency decided that he was hitting because he was simply a difficult person, they overlooked that Jorgé was hitting to protest constant taunting by his housemates, and to communicate to staff that he needed their help to stop his housemates from taunting him.

Some direct care workers who saw Jorgé every day realized he was hitting because of inhumane living conditions. Jorgé had a behavioral plan which called for punishment when he hit, but these direct care workers decided it would make more sense to provide Jorgé with supports that would make hitting unnecessary. Staff began helping Jorgé’s housemates relate to him and began helping Jorgé communicate since he could not use much verbal communication. The result was that Jorgé and his housemates began getting along better, and Jorgé didn’t feel the need to hit.

Since the issue of cost is often used to justify not reforming the IDD system, let’s look at the costs and benefits involved in analyzing what was going on in Jorgé’s life and providing supports to improve his situation:

Costs: $0.00 above what was already being spent for staff.

Benefits: Greatly decreased hitting

Increased client self-esteem

Increased staff self-esteem

Better home environment for clients

Better work environment for staff

Fewer injuries and worker’s compensation claims

People with IDD’s lives were improved

Improving Jorgé’s life didn’t cost the system any extra money; it actually saved money in the form of fewer staff injuries. Yet, when the agency found out that staff was providing these supports, they ordered staff to stop. If extra costs weren’t an issue, why did agency management forbid Jorgé’s direct care workers from providing beneficial supports?

Agency management decided that the cost of changing their belief that Jorgé hit because he was a difficult person outweighed the spectacular benefits to everyone, including the agency itself. The agency’s spoken objection was that talking to Jorgé had been tried and didn’t work (despite obvious evidence to the contrary). The agency’s unspoken objection was that the new supports shifted control so that all clients in the home were exercising greater self-control rather than submitting to control by the system. In a system where we spend so much time insisting that people with IDD be as independent as possible, why would greater client self-control be an exception?

The greatest cost in this example was paid by Jorgé when the IDD system decided that no benefit to him was worth the system having to consider that he might be capable of greater self-control, or worth allowing him the dignity of that self-control. Instead of helping them, the agency deliberately chose a negative outcome for Jorgé and his housemates so that it would not have to change.

We need to decide what the IDD system is here for – is it here to wield power over people with IDD’s lives at all costs (meaning at the cost of people with IDD having dignified, humane lives), or are we here to empower people with IDD so that they can have lives rich in dignity and self-determination to the greatest extent of their capabilities?

Many years ago, an IDD agency higher-up told me that when I saw injustice to people with IDD, I should say the Serenity Prayer and focus on the part about accepting things I cannot change. I decided on a different IDD serenity mantra:

Grant me

The serenity to accept that, like all things, I must change

The wisdom to listen to people with IDD since they’re the experts

And the courage to challenge indifference.

Improving the lives of people with IDD involves changing our misconceptions about people with IDD. The cost to us is discomfort at having to change. To people with IDD, the benefit is relief at having their humanity finally recognized.

Recognizing the humanity of people with IDD is what the IDD system was intended to do – so how did we end up with a system that is so often humanity-avoidant?

Stay tuned & stay dedicated.

*Name has been changed to protect confidentiality