Ethical treatment decisions are readily accountable. For many providers, that means “do good and take data.” For parents, that means a good treatment program with a well-trained provider is going to to have some measures that you can see and understand.
Those measurements will be organized, and accessible — even older data. You should be able to make decisions in a timely way based on the data, too.
Here are some helpful hints from Shahla on evaluating accountability, with my lay-person translation, to help you know what to look for:
1. Operationally defined, observable responses.
Let’s say you want to increase positive interactions between your child with autism and a sibling. There has to be a clear list of what’s going to be defined as a positive interaction. In some families, for example, roughhousing could be a positive interaction. Make sure you know what is going to be tagged and how it will be counted.
2. Reliable observation systems.
Researchers have actually studied how observation is done, in other words, asking the question, “is this what I would have seen if I had been there?” The best example I know of this is the claim that discrete trial training “recovered” children from their autism. Shahla told me once that she had seen video of the people who had gone through the discrete trial training with Lovaas and she could see the autism was still there. In other words, whatever they measured was a recovered skill, not a recovered person. Each person using the measurement system should be measuring in about the same way.
3. Muti-level observation systems.
Observation tools should handle both comprehensiveness and detail. Is there a tool that is evaluating the organization of the program? Is there a tool evaluating the activities? How about the interaction? For behavior analysts, video has proven to be valuable. For parents, that opportunity helps you see more objectively.
4. Social validity systems.
Look for a measurement system that lets you know whether your child is happy with the efforts and the effects. And maybe you, too.
5. Treatment fidelity systems.
Is someone measuring whether the treatment is being delivered in the manner it was meant to be delivered? There are always practical challenges in delivering a treatment. Measuring systems can ensure those challenges are being addressed.