This insightful document, Holding the 10,000 Details: Productive Relationships Between Parents of People with Developmental Disabilities and Service Workers, explores the complexities of building meaningful, collaborative relationships between parents and service workers to enhance the lives of individuals with developmental disabilities. Through discussions with parents, service workers, and advocates,...
This document explores innovative approaches to nursing within developmental disability (DD) systems, emphasizing the shift from traditional roles to a more person-centered, growth-focused model. It advocates for separating health care case management from direct nursing services, encouraging nurses to act as consultants and educators rather than compliance agents. Key...
Deliberate–Fire: Transforming Support for People with Developmental Disabilities This insightful report dives into the organizational transformation of Onondaga Community Living (OCL) in Syracuse, NY, as it shifts from group homes to individualized support services for people with developmental disabilities. Written by John O’Brien and supported by Syracuse University’s Center...
This document, Guiding People Home: The Role of Wisconsin’s Supported Housing Specialist, dives into the innovative work of Marcie Brost, who pioneered the role of Supported Housing Specialist in Wisconsin. Over six years, Marcie collaborated with families, service providers, and housing agencies to help people with disabilities secure individualized...
Walking Toward Freedom: One Family’s Journey Into Self-Determination This inspiring document explores the journey of Sheri, a woman with significant disabilities, and her parents, Marge and Earl, as they pioneer a path toward self-determination. Written by John O’Brien and Connie Lyle O’Brien, it highlights the family’s relentless efforts...
Cultivating Thinking Hearts: A Journey into Lifesharing and Community Building This document, Cultivating Thinking Hearts, is a heartfelt exploration of lifesharing—a conscious, intentional way of living that fosters deep relationships, mutual care, and community. Authored by Helen Zipperlen and John O’Brien, it draws on decades of experience with...
This document, written by John O’Brien, explores the profound contributions of Camphill and l’Arche—two intentional communities dedicated to supporting people with learning disabilities. It delves into how these movements embody values of dignity, mutual respect, and meaningful relationships, offering a unique approach to social care. Rooted in shared-life households...
disabilities to access integrated employment through knowledge creation. Despite decades of progress, the inclusion of people with disabilities in the workforce has stalled, with only 19% of individuals with intellectual and developmental disabilities (ID/DD) in integrated employment. The authors argue that practical, personalized knowledge is key to breaking...
This document, To Boldly Go… Individualized Supports for Georgians With Severe Disabilities, is a comprehensive study prepared for the Georgia Governor’s Council on Developmental Disabilities. It explores the challenges faced by individuals with severe disabilities in Georgia and advocates for a shift from institutional care to personalized, community-based support...
Discovering the Promise of Supported Living: A Guide to Transformative Change This insightful document, More than Just a New Address by John O’Brien and Connie Lyle O’Brien, explores the shift from traditional residential services to supported living for people with developmental disabilities. It highlights how supported living empowers individuals...
xploring Dane County’s Self-Determination Project: Options for Improvement This document dives into Dane County’s self-determination project, offering a thoughtful analysis of how to assess its impact and guide future improvements. It outlines four key options for evaluation, each with distinct questions, methods, and potential impacts. Option 0 focuses...
The Transition to Supported Living: A Journey of Change and Opportunity This report evaluates the transformation of Jay Nolan Community Services (JNCS) from operating group homes to providing individualized supported living services for people with autism. Conducted in June 1995, the evaluation highlights the challenges, successes, and lessons...
This document, “Learning Institute on Innovation and Individualized Supports for Persons with Complex Needs,” dives into a transformative journey undertaken by NYSACRA and participating agencies in 2016. It explores how to better support individuals with complex needs through person-centered approaches, emphasizing community integration, self-direction, and individualized supports. Over...
This document dives into Vermont’s Self-Determination Project, a groundbreaking initiative funded by the Robert Wood Johnson Foundation to empower people with developmental disabilities. It captures insights from a focus group held in June 1998, where participants explored how self-determination can transform lives. The project emphasizes giving individuals and...
Supported living is a journey of commitment, creativity, and collaboration. It’s about helping people with disabilities live meaningful lives in their own homes, on their own terms, while fostering relationships and community connections. This work is not about finding one-size-fits-all answers but about asking the right questions and staying...
Supporting a Journey from Chaos to Contribution This document, crafted by John O’Brien in 2016, offers an insightful look into the transformative journey of E, a person with developmental disabilities, from chaos to meaningful community contribution. It highlights the innovative support systems designed to help E overcome emotional dysregulation,...
Discovering Leadership in Complexity: An Introduction to Cynefin This document explores the Cynefin framework, a powerful tool for decision-making developed by Dave Snowden. Cynefin helps leaders understand how different contexts—Clear, Complicated, Complex, Chaotic, and Uncertain—shape problem-solving approaches. Patti Scott and John O’Brien share their insights on applying...
This document from Pathfinding Outfitters is a thoughtful guide to enhancing ideas and plans through six key lenses: community, valued roles, relationships, autonomy, resilience, and commitment to an inner journey. It encourages readers to explore ways to deepen their impact by fostering connections, strengthening relationships, and creating meaningful roles that...
“I have lived on the margins & fought hard to become a participating citizen.I am a thinker & a dreamer.I have a reputation as a visionary.Let’s look at what fosters community capable of including peoplein all the diversity of their gifts & dreams.” Our friend, Judith Snow, died on 31...
This document is a detailed report from a 1990 workshop at the AAMR Conference in Atlanta, Georgia, focused on empowering self-advocacy groups for people with developmental disabilities. Sponsored by the Research & Training Center on Community Living, it explores strategies to help individuals speak for themselves, advocate for systemic...
Exploring Our Voices: A Journey of Self-Advocacy and Empowerment This document captures the powerful reflections of over 100 self-advocates and advisers who gathered in Columbus, Ohio, on August 30, 2000, to explore the meaning and impact of voice. Facilitated by John O’Brien and creatively interpreted by Candee Basford,...
This document dives into the transformative power of citizen advocacy, focusing on the Georgia Advocacy Office (GAO) and its innovative approach to supporting people with disabilities. It explores how ordinary citizens can build meaningful, one-on-one relationships with individuals at risk of social exclusion, acting as allies to protect their...
This insightful document, My House is Covered with Papers! Reflections on a Generation of Active Citizenship, explores the transformative journey of five Wisconsin mothers advocating for their children with developmental disabilities. Authored by Connie Lyle O’Brien, John O’Brien, and others, it highlights decades of civic activism that reshaped...
This document explores the evolution, challenges, and future of Citizen Advocacy (CA) as a vital social movement aimed at fostering authentic relationships and advocating for people with developmental disabilities (DD). It reflects on the promise of CA since its inception in 1972, addressing the question, “Who will be there...
This document, Walking Out, Walking On, explores the transformative journey of advocating for social inclusion and person-centered support systems. It challenges traditional, mechanistic approaches to disability services, emphasizing the need to move beyond rigid systems and embrace innovative, community-driven solutions. Through personal stories, reflections, and practical insights, it highlights...
This insightful document, Surviving Cogworld? Supporting People with Developmental Disabilities in a Mechanistic System by John O’Brien, explores the challenges of balancing relationships and transactions in systems designed to support people with developmental disabilities. It critiques the growing mechanization of care, dubbed “Cogworld,” where assistance is treated as a...
This document dives into the transformative potential of the Home and Community-Based Services (HCBS) Final Rule, exploring how it can reshape the lives of individuals relying on long-term support. Written by John O’Brien, it highlights the Rule’s purpose: ensuring Medicaid-funded services promote community integration, employment opportunities, personal choice, and...
This fieldbook, Cultivating Capacity: A Fieldbook for Strengthening Person-Centered Practices, is a practical guide designed to help organizations and individuals improve their ability to offer person-centered support for people relying on long-term care. Rooted in Theory U principles from The Presencing Institute, it emphasizes transformative leadership, deep listening, and...
This insightful document, “Noticing That We’re Upside Down” by John O’Brien, explores how person-centered planning can transform the lives of people with intellectual and developmental disabilities (ID/DD). It emphasizes designing supports tailored to individual interests, capacities, and challenges, rather than relying on rigid, predetermined programs. Using seven guiding “How...
John O’Brien This document Numbers and Faces: The Ethics of Person Centered Planning dives deep into the ethics and challenges of person-centered planning, a process designed to empower individuals with developmental disabilities to live meaningful, self-determined lives. It explores the tension between the values services claim to uphold—like inclusion...
This document celebrates the life and groundbreaking work of Wolf Wolfensberger, a visionary leader in the field of developmental disabilities. For over 50 years, Wolfensberger championed the rights and dignity of people with intellectual disabilities, reshaping societal perceptions and service systems. He introduced transformative concepts like normalization and...
This document, Assistance With Integrity: The Search for Accountability and the Lives of People With Developmental Disabilities by John O’Brien and Connie Lyle O’Brien, dives deep into the challenges of accountability in services for people with developmental disabilities. It critiques the current system’s reliance on rigid regulations and inspections,...
Discovering the Heart of Power Sharing: A Guide to Inclusion and Collaboration This insightful document dives into the concept of power sharing between people with substantial disabilities and their assistants, exploring how collaboration can empower individuals to lead richer, more autonomous lives. It challenges traditional service models that prioritize...
This document, Normalization: Resolving Some Contradictions by John O’Brien, dives deep into the principle of normalization—a concept aimed at improving the lives of people with intellectual disabilities by fostering social acceptance and inclusion. It addresses three key criticisms of normalization: (1) whether striving for “normalcy” devalues individuals with disabilities,...
This thought-provoking paper by John O’Brien dives into the ethical debate surrounding the use of pain as a professional tool in working with people with severe disabilities. O’Brien firmly argues against the intentional infliction of pain, emphasizing that it undermines positive human relationships and creates a power imbalance between...
This insightful document by John O’Brien and Marsha Forest explores the true meaning of inclusion, debunking three common misconceptions that often hinder progress. It challenges the idea that inclusion means everyone must love each other, always be happy, or act as if we’re all the same. Instead, it...
This document by John O’Brien, Connie Lyle O’Brien and David Schwarz dives deep into the question: “What can we count on to make and keep people safe?” It explores how to create effective safeguards for people with developmental disabilities, balancing community ties and professional systems. Through discussions, historical...
This document dives into the heart of creating meaningful lives for people with developmental disabilities (DD) by exploring practices that foster belonging, choice, valued social roles, contribution, and shared spaces. It emphasizes the importance of cultural change, urging readers to challenge societal norms like being “too busy” and embrace spaciousness—making...
This document dives into the impact of the Home and Community-Based Services (HCBS) Final Rule, a game-changer for organizations funded by HCBS waivers. States must comply with this rule to access Medicaid waiver funds, but the real difference lies in how organizations embrace its purpose. The Rule aims to enhance...