Outcomes Matter--How Do We Measure Progress

Dear Fellow Advocates,

I would like to offer a few thoughts that arise from years spent among people whose suffering was hidden in plain sight, and whose hopes depended on being seen clearly by the wider world. I offer them as a reflection, not a rebuke. Every community that labors for justice must ask itself whether it is being sustained by wisdom or comforted by habit.

As some of you know, I began my career in women's and children's services. I directed a crisis center that included programs for the prevention of child assault, services for survivors of sexual violence, suicide intervention, and shelter for women escaping abuse. Those years acquainted me with courage. They also acquainted me with disappointment.

Again and again, there were moments when meaningful change was within reach. We learned what was effective. We developed better practices. We educated, organized, advocated, and persevered. Yet decades later, the conditions we struggled against remain present. One learns from such experiences that knowledge is not enough. Good intentions are not enough. A society can understand what ought to be done and still fail to do it, time and time again.

Our circumstances in the IDD community are in lock-step with past generations who have sought to be included in their community, to be seen, to maintain their dignity, to be enough.

There is a phrase that has circulated for decades among people engaged in difficult work: progress is a process. There is truth in it. Meaningful change requires patience. It requires endurance. We remain in this work because we believe small efforts accumulate into larger ones.

Yet, as past generations and fights have taught us, there is another truth.

Progress is not only a process. It is an outcome.

The distinction matters. A process can continue indefinitely. It can become familiar. It can become its own justification. 

An outcome asks something more demanding of us.

 It asks whether lives have meaningfully improved. 

It asks whether rights have become secure. 

It asks whether promises have become realities.

Over the years, advocates for women and children learned this lesson painfully. Awareness matters. Education matters. Compassion matters. But every movement must confront the question of what has changed, and whether that change will endure.

And so we must ask ourselves a few questions.

Do people with intellectual and developmental disabilities possess protections that cannot be withdrawn?

Do people have more self-determination today than yesterday?

Do people enjoy self-determination that is secure rather than conditional?

After more than twenty-five years of teaching, promoting, and requiring person-centered practices, have our systems embraced the principle that people should direct their own lives?

The answers are clear.

The 'progress' we celebrate remains elusive. Rights that should be settled must be argued for again, and again. The future is described as something perpetually approaching, yet, never arriving.

I am unwilling to be satisfied with a future that never arrives. Are you?

I do not want the efforts of this generation—the grief, persistence, sacrifice, and hope invested by families and advocates—to become another chapter in a long history of deferred promises. I do not want future advocates to inherit the same conversations, the same frustrations, and the same assurances that meaningful change is just beyond the horizon.

There is little left to discover about what people need. We know the language of self-determination. We know the principles of person-centered support. We have held conferences, written plans, issued directives, and repeated these ideas for decades.

The question before us is not whether we understand the destination.

The question is whether we are prepared to insist upon arriving there.

History teaches that institutions do not change because they have been persuaded by argument alone. They change when people refuse to accept the distance between principle and practice. They change when aspirations become expectations, and expectations become demands.

Process has its place. It teaches patience. It preserves hope. But when process substitutes for outcomes, it becomes a way of postponing accountability. Accountability of the system and the people who are satisfied with perpetual process.

What we owe one another is not movement, but arrival.

The measure of our progress will not be found in how often we speak of change, but in whether people experience it in their daily lives—in freedoms secured, choices respected, opportunities sustained, and dignity protected--to be truly determining how we implement our budgets and direct our services and supports.

Those are things that can be seen. They can be measured. They can be handed from one generation to the next.

That is the meaning of progress.

The short 8 minute video below demonstrates that now some 25 years after trying to get authentic person-centered implementation, we do not have it--unless family is extremely knowledgeable and has significant resources to make it happen.

I hope you listen. 

Must Listen-8 minutes from National Expert on why we don't have authentic person-centered planning--and what our jobs are as advocates.

Thanks for reading and listening.