Beyond Community Living: The Next Evolution of Disability Support
We changed where people live. Now we must change how we support them to live.
In the 1990s, the disability rights movement helped usher in a profound shift in how people with intellectual and developmental disabilities were supported. Institutionalization was increasingly challenged, and concepts like mainstreaming, community integration, and Supported Living Services (SLS) offered a different vision of what life could look like.
People with disabilities deserved more than institutional care. They deserved homes of their choosing, opportunities to participate in their communities, relationships, autonomy, and the same ordinary experiences that make life meaningful for everyone else.
This was an extraordinary step forward.
But decades later, we have to ask ourselves an uncomfortable question:
Did we change the lives of people with disabilities, or did we primarily change the places where they live?
From Institutionalization to Isolation
The movement away from institutions was necessary. It challenged the belief that people with significant disabilities needed to be separated from society to receive support.
Supported Living Services emerged from the recognition that people should not have to demonstrate independence or meet certain expectations to earn the right to live in their own homes. Support should be built around the person, rather than requiring the person to fit into an existing program.
Yet somewhere along the way, many people found themselves experiencing a different kind of isolation.
They may live in a home of their choosing, but their days are largely defined by staffing schedules, routines, risk management, and the availability of paid support. Their primary relationships may be with people who are compensated to be there. Their opportunities to participate in community life may depend on whether someone else has the time, confidence, or willingness to make those experiences possible.
For people who communicate differently, particularly those who do not rely on spoken language or experience frequent ebbs and flows of dysregulation and anxiety, the isolation can be even more profound.
Their preferences may be interpreted through the assumptions and biases of others. Their distress may be labeled as behavior rather than recognized as potential communication. Their attempts to communicate may be misunderstood, overlooked, or managed rather than explored.
We succeeded in moving people out of institutions. But we have not always succeeded in dismantling the institutional ways of thinking that followed them into their homes.
A person can live in the community without truly experiencing community. A person can have choices without having meaningful influence over their own life. And a person can be surrounded by support staff while remaining profoundly alone.
Safety Is Not the Same as a Self-Determined Life
Much of our service delivery system continues to operate around a relatively narrow understanding of support.
Is the person safe? Are their basic needs met? Were medications taken? Were appointments attended? Were incidents prevented? Was the shift documented?
These things matter. They are necessary responsibilities of providing support.
But they are not, by themselves, a meaningful life.
When safety and supervision become the primary measures of success, we risk reducing people to the tasks required to care for them.
We can become so focused on preventing something from going wrong that we lose sight of what it means for something to go right.
Person-centered thinking asks us to consider both what is important to a person and what is important for them. Health and safety cannot be ignored, but neither can relationships, preferences, personal identity, and the experiences that give life meaning.
A meaningful life includes belonging, curiosity, discovery, joy, frustration, risk, growth, and the freedom to influence what happens next.
These experiences are not rewards for achieving independence. They are fundamental parts of being human.
And supporting someone to experience them requires far more than supervision.
The Missing Piece Is Relationship
We are entering another important period of learning in disability services.
Increasingly, we are recognizing that meaningful support is not simply about what we do for another person. It is also about how we are with them.
This distinction is especially important for people who experience communication differences, sensory processing challenges, anxiety, or trauma.
Communication is not limited to words. It happens through movement, facial expression, changes in breathing, body positioning, gestures, vocalizations, withdrawal, engagement, and countless other signals.
Understanding another person's communication requires curiosity, patience, and a willingness to question our own interpretations.
It requires us to recognize that what we call a behavior may be an expression of discomfort, uncertainty, fear, frustration, sensory overwhelm, an unmet need, or an attempt to exercise choice.
But it also requires humility. We cannot assume we know what another person is experiencing simply because we have observed their behavior. Even when we recognize a familiar pattern, our interpretation may be incomplete or incorrect.
For people who communicate without relying on spoken language, this responsibility becomes especially important. We must provide accessible ways to communicate, respect expressions of refusal, and remain open to the possibility that our understanding needs to change.
We cannot accomplish this through a checklist.
We have to learn how to be in healthy, responsive relationships with the people we support.
Relationships where communication is explored rather than assumed. Where trust is developed through consistency and respect. Where the person is not expected to suppress their discomfort to make the support environment easier for everyone else.
That means learning about the other person's communication and sensory experiences. But it also means learning about ourselves.
We Are Part of the Support Environment
One of the most important shifts we can make as providers is recognizing that we are not neutral participants in another person's environment.
We bring our own emotions, assumptions, stress, expectations, and nervous systems into every interaction.
Our tone of voice, body language, pace, facial expressions, and responses to uncertainty can influence whether another person experiences an interaction as safe, predictable, or overwhelming.
If we are anxious, frustrated, rushed, or dysregulated, those internal experiences can shape how we respond, even when our intentions are good.
For someone who experiences heightened sensory awareness or has difficulty communicating distress, those interactions can be particularly significant.
This is why self-awareness and self-regulation must become essential competencies in disability support.
One important component of this is interoception, our ability to sense and interpret signals from within our own bodies.
We need to recognize when our breathing becomes shallow, our muscles tense, our heart rate increases, or our bodies begin signaling discomfort. We need to understand how these internal experiences influence our reactions, assumptions, and interactions with others.
When we recognize our own rising frustration or anxiety, we have an opportunity to respond intentionally rather than react automatically.
This is where co-regulation becomes important.
Co-regulation is not about controlling another person's emotional state or requiring them to become calm. It is about responding in ways that support connection, comfort, predictability, and a person's own regulatory needs.
For one person, that may mean a reassuring voice or familiar companionship. For another, it may mean fewer words, reduced sensory input, movement, additional space, or simply being allowed to disengage.
The support must be individualized. What helps one person feel safe may be overwhelming to another.
We must also recognize that regulation is not always visible. Someone who appears quiet, agreeable, or compliant may still be experiencing significant distress.
Compliance can easily be confused with trust. And the absence of visible distress should not automatically be interpreted as emotional safety.
We cannot demand calm from someone while bringing tension into the relationship.
We cannot expect trust while repeatedly overriding someone's communication.
And we cannot meaningfully support autonomy while treating distress as something to eliminate rather than something to understand.
Understanding Patterns, Predictability, and Different Ways of Experiencing the World
As our understanding of neurodivergence grows, we are learning to reconsider some of the assumptions traditionally made about behavior, routines, and participation.
For some neurodivergent people, patterns, predictability, and consistency are important ways of understanding and navigating the world.
A familiar routine may provide comfort. Knowing what will happen next may reduce uncertainty. Repeated experiences may help a person anticipate what to expect and participate with greater confidence.
When someone struggles with an unexpected change, we may interpret their response as resistance, inflexibility, or unwillingness to participate.
But what if the change has disrupted something important to their understanding of the environment? What if the person needs more information, more time, a different way of communicating, or an opportunity to regain a sense of control?
Rather than immediately focusing on increasing tolerance for change, we should first ask whether the change was necessary, how it was communicated, and whether the person had meaningful influence over what happened.
This does not mean that routines should never change or that people cannot develop new skills.
It means that growth should be supported through understanding, not forced through unnecessary discomfort.
And it means recognizing that the goal is not to make a neurodivergent person experience the world in a more neurotypical way.
The goal is to understand how that person experiences the world and create opportunities for them to participate, grow, and exercise self-determination in ways that are meaningful to them.
Trauma, Anxiety, and the Right to Be Understood
For many people with significant support needs, experiences of powerlessness are not unusual.
Imagine living a life in which other people determine when you wake up, what activities are available, who enters your home, how your body is supported, and whether your communication is understood.
Imagine repeatedly experiencing discomfort or distress without having a reliable way to explain what is happening.
Even when support is delivered with good intentions, a lack of meaningful control can contribute to anxiety, mistrust, or emotional distress.
Some people also carry histories of trauma that have never been recognized or adequately addressed.
When we fail to consider trauma, anxiety, sensory needs, and communication differences, we risk interpreting a person's responses as problems located within them rather than as information about their experiences.
We may respond with more supervision, greater restrictions, or increasingly rigid routines.
We may teach someone to tolerate discomfort, suppress their responses, or comply with expectations without considering what those expectations are costing them.
And in doing so, we may unintentionally reinforce the very isolation we are trying to prevent.
Trauma-informed support does not mean assuming every challenge is caused by trauma. It means recognizing that people's experiences matter, that behavior has context, and that emotional safety and meaningful choice are essential to well-being.
It also means recognizing that physical health, pain, sensory experiences, communication barriers, and emotional distress can intersect. We cannot responsibly interpret a person's behavior without considering these possibilities.
It means moving away from asking only, "How do we manage this behavior?"
And toward asking, "What is this person experiencing, what are they communicating, and what might need to change in the environment, in our expectations, or in our relationship?"
The Next Evolution of Supported Living
I do not believe the supported living movement failed.
I believe it moved us in the right direction, but the work was never finished.
The first great shift was recognizing that people with disabilities belong in their communities and have the right to determine where and with whom they live.
The next shift must be recognizing that self-determination requires more than a physical address, a service plan, or a schedule of paid support.
It requires relationships that support autonomy rather than compliance.
It requires providers who understand communication beyond spoken language, who recognize the influence of sensory and emotional experiences, and who have the skills to support connection rather than simply manage risk.
It requires us to move beyond teaching people how to tolerate the environments we create and begin asking how those environments can better respond to them.
It also requires us to reconsider what we value in the people providing support.
Technical skills, reliability, and knowledge of procedures are important. But so are emotional awareness, humility, curiosity, flexibility, and the ability to build healthy relationships without creating dependence or exercising unnecessary control.
These are not optional interpersonal qualities. They are foundational support skills that deserve intentional training, supervision, and ongoing development.
Person-centeredness cannot exist only in a planning document. It must be reflected in how staff communicate, how decisions are made, how disagreements are resolved, how risks are considered, and how the person experiences their everyday life.
It also means that providers must be willing to examine their own practices.
Are we supporting a person's preferences, or are we maintaining routines because they are convenient for staff?
Are we creating opportunities for meaningful relationships, or are we unintentionally making paid support the center of someone's social world?
Are we interpreting behavior with curiosity, or relying on assumptions that have gone unchallenged for years?
Are we measuring success by the absence of incidents, or by the presence of belonging, participation, personal growth, and meaningful choice?
These questions require ongoing reflection, collaboration, and accountability.
And perhaps most importantly, we need to recognize that self-determination is not something we give another person.
It is something we respect, make room for, and actively support.
The Work Is Ongoing
Every major change in disability services has challenged assumptions that once seemed normal.
Institutionalization was once considered necessary. Segregated services were once accepted as the best available option. Community living was once considered unrealistic for people with significant support needs.
Progress happened because people were willing to question those assumptions.
We must be willing to do the same today.
Our understanding of neurodivergence, communication, trauma, sensory experiences, and human relationships continues to grow. Our approaches to support must grow with it.
We should be proud of the progress that brought people out of institutions and into their communities. But we should not confuse that progress with the completion of the work.
Because a home in the community is not enough if the person remains disconnected, misunderstood, anxious, or without meaningful influence over their life.
The next evolution of disability support is not simply about where people live, or even what services they receive. It is about how we relate to one another, how we understand one another, and whether the support we provide creates the conditions for genuine self-determination.
We helped people move into their communities.
Now we need to do the deeper work of helping people experience belonging, connection, and lives that are truly their own.
As the saying goes, "Diversity is having a seat at the table. Inclusion is having a voice. Belonging is having your voice heard."
