40 Big Ideas

Summary

Person-centered planning is a way for people to say what they want and need to have a good life. This has been important for people with disabilities. For a long time, they weren’t seen as important. This planning is talked about and used for people with and without disabilities, but people with disabilities often don’t get support that is truly just for them.

Person-centered planning places people, not systems, at the heart of planning and decision-making. It emerged as a direct response to dehumanizing institutional practices. Person-centered engagement evoked radical acts of reimagining, activism, and organizational change, grounded in the belief that all people have value, voice, purpose, and potential.

Person-centered planning invites people with intellectual and other developmental disabilities (IDD) and their allies to reflect upon and imagine what a good life means to them. It shifts the focus from programs to people, from managing needs to maximizing possibilities. It is an intentional listening, noticing, and naming process: What brings this person to life? What matters most to them? What gifts and strengths could enrich their communities? Who are their people? What valued social roles can be created in their communities? The discovery process is not a compliance event but a thoughtful, evolving conversation.

The Imaginative Journey; Creating Pathways to Citizenship, Beth Mount, 2017

Citizenship lies at the heart of person-centered work, shifting the social perception and status of people with disabilities from devalued to valued contributory roles, as discussed in Conversations on Citizenship & Person-Centered Work, a 2011 book by John O’Brien and Carol Blessing. Deep listening, high expectations, collective creativity, and skillful action can shift the perceptions, status, and engagement of people in ways that reshape identity, increase self-worth, clarity of purpose, and a genuine sense of belonging.

Through a capacity-oriented lens, families and staff often see someone they thought they knew in a new light. Community members realize how much is gained when people with disabilities are present and part of the fabric of more competent communities. This transformation calls on the collective responsibility of all of us—families, professionals, neighbors, and leaders—to actively participate in creating communities where everyone’s contribution is valued and welcomed.

Although person-centered planning was designed to spark systemic transformation, its impact often remains symbolic or procedural. It has been less impactful on systems than might be assumed.

Systems have adopted the language—revising paperwork, offering self-direction, referencing supported decision-making—but these changes frequently stay at the surface and don’t always shift the lived experience of people with disabilities.

Person-centered planning arose, in part, to counter congregate planning. Its creators defined it as part of organizational change to disrupt the massive community-based yet congregate settings created in response to the institutions. Despite nearly 50 years of “person-centered” planning, those settings largely remain in place.

Systems are stubborn things. Innovation is tolerated until it threatens.

In our experience, person-centered planning has led to reforms when the scale is small and the efforts are led by strong, principled advocates.

Person-centered planning on a larger scale is aspirational and, as such, vulnerable to co-option and perversion. Without attention to the beliefs and intentions of those in multiple support roles, even the best-designed person-centered processes remain little more than empty promises or paperwork. Real change comes when we commit to walking with people, not managing them.