What Does Affirming, Agency-Centered Support Actually Look Like?

There are a lot of conversations happening right now about affirming, agency-centered support for disabled people. I am glad those conversations are happening. I also think we need to be more specific about what those words look like in day-to-day practice.

For me, it starts with understanding the person.

Who are they? What matters to them? What brings them joy? What causes stress? How do they communicate? What do they choose to do when no one is directing them? What kind of support would make their life safer, fuller, or easier to navigate?

These questions should come before we build a long list of goals.

A lot of services begin with an assessment. The assessment identifies skills that are missing, those skills become targets, and the team begins working through them. That process can be useful, but it can also pull our attention away from the person the plan was created to support.

We become focused on what needs to be taught. We look for opportunities to run programs, collect data, and demonstrate progress. Meanwhile, we may miss the ways the person is already communicating, initiating, solving problems, or showing us what they need.

A person can become a collection of targets surprisingly quickly.

That is one of the biggest problems I see across disability services. Providers are often trained to implement procedures without spending enough time thinking about why the procedure is being used or how it supports this particular person.

Every goal needs a purpose beyond mastery.

How will this skill affect the person’s daily life? Will it help them communicate, advocate for themselves, build relationships, care for their body, access something meaningful, or move through the world with greater safety and freedom?

When we cannot answer that question clearly, the goal may deserve another look.

Many autism interventions were historically developed around normalization. Children were taught to communicate, play, move, and respond in ways that made them appear more typical. That history still shapes many of the goals used today, even when the language around those goals has changed.

Sometimes a difference is treated like a problem simply because it looks unfamiliar. A person may play differently, communicate differently, move their body differently, or have interests that other people do not understand.

Before trying to change those things, we need to consider whether anyone is being harmed. Is the person unable to access something they want or need? Have they shown us that they want help? Is the concern connected to their quality of life, or are the people around them uncomfortable with the difference?

Those questions help us separate meaningful support from attempts to make someone fit more neatly into an existing environment.

Providers also need to think carefully about the role they have in another person’s life. Every prompt, demand, redirection, and interruption becomes part of that person’s human experience. We influence how much choice they have, how often they are allowed to say no, and whether their communication is respected.

Dignity has to be part of those decisions.

One question I return to often is whether we would use the same procedure with a child who did not have a disability. Would we control their access to ordinary food, toys, or activities in the same way? Would we interrupt their play this frequently? Would we require them to request every small thing throughout the day?

Some people need highly structured teaching, and breaking a skill into smaller steps can be genuinely helpful. The concern is what happens when intensive control becomes the default simply because the person has a disability.

Self-advocacy also needs to be considered from the beginning.

The children receiving services now will grow into adults. They will enter workplaces, relationships, medical settings, and communities where people may misunderstand them or make decisions without their input.

Have we helped them communicate no? Do we respond when they use it? Have we shown them, through our own behavior, that their discomfort matters and that they deserve to be treated with respect?

Those lessons may shape their lives long after a specific treatment goal has been mastered.

For some people, preferences and values will be communicated clearly. For others, understanding them will take more observation, collaboration, and time. Less obvious communication gives us a greater responsibility to pay attention. It does not give us permission to decide that the person is too disabled to have preferences or agency.

Affirming support can involve direct teaching, structure, boundaries, and difficult work. Someone may need help with communication, daily living, health, safety, relationships, academics, or employment. Those skills should be selected because they serve the person’s life, rather than because they appear on a standard checklist.

The goal should be a life that works for the person living it.

Affirming, agency-centered support begins with knowing who the person is, what matters to them, and what our area of expertise can contribute. The assessments, procedures, and data should remain in service of that person throughout the work.

When the plan begins receiving more attention than the person, it is time to pause and look again.