Feature Issue on Engaging Communities Underrepresented in Disability Research

Life is a journey filled with unique experiences and opportunities. For people with disabilities and their families, additional information and supports are often needed to navigate and plan for the life they want. The Charting the LifeCourse (CtLC) framework is an authentic, grassroots movement driven by the core belief that all people have the right to live, love, work, play, and pursue their life aspirations. The framework was created to help individuals and families of all abilities and ages develop a vision for a good life and discover what it takes to live the life they desire. The tools help explore life possibilities, organize personal goals, and identify needed services and supports. What began with a question about what supports individuals and their families need has evolved into a transformative, human-centric movement impacting policies and practices across the country.

The CtLC framework evolved within a collaborative process led by the Institute for Human Development at the University of Missouri-Kansas City, a University Center for Excellence in Developmental Disabilities (UCEDD), in partnership with national and statewide stakeholders. It was initiated by a team of family researchers interested in understanding the needs of families who are supporting members with disabilities across the lifespan. Families and self-advocates around the world have been critical to the development and ongoing evolution of the work. The framework quickly evolved into resources and tools people can use in their day-to-day lives as well as for systems and policy change. The framework encourages the use of plain, everyday language in materials and activities.

Focused on life experiences and possibilities across each of the stages of life for both the person and their family, the CtLC framework helps people and their families develop person-centered plans and navigate challenging yet transformational conversations around the dignity of risk, informed choice, end of life planning, and supported decision making. The framework and tools explore individual and family perspectives as distinct yet inextricable forces in the pursuit of meaningful lives for all family members. The framework embraces personhood, self-determination, and the understanding that all means all: all abilities, all races, all languages, all cultures, all ages, all genders.

To this end, CtLC continues to evolve to reach as many people as possible. The framework is continuously refined based on feedback from people with disabilities, their families, and professionals representing many domains of diversity. Charting the LifeCourse’s foundation is based in the reality that all forms of diversity are vital, necessary, and irreplaceable components of human existence. To live this reality, practitioners need to acknowledge that planning, problem solving, and advocating all are culturally influenced, as are concepts of self-determination, advocacy, and personhood. One culture may value individual independence, while another values collective interdependence, for example, and this difference can profoundly affect the lives of people with disabilities.

Brenda Smith, center, collaborated with Jim Warne, right, to present the Charting the LifeCourse framework in South Dakota.

As family members of people with disabilities, the creators of the framework and tools witnessed the limitations of generic, inflexible programs and services that do not account for the diversity and complexity of individual families. The tools were designed to be as clear, visually engaging, and adaptable as possible, because we know that the “all” can’t be “all-inclusive” without the capacity for growth, flexibility, and customization. At the LifeCourse Nexus Training and Technical Assistance Center, our teams collaborate with many different partners, from self-advocates and their families to state systems. Partnership with diverse family organizations led to the translation of the framework and tools into multiple languages, including Spanish, Mandarin, Portuguese, and Amharic. The collaboration goes beyond linguistic translation, ensuring that the framework addresses and honors the unique contexts of people and their families. Transcreation, a term coined in the combination of linguistic translation with cultural adaptation and creative re-interpretation, communicates a message while maintaining its intent, style, tone, and context. Oliver Carreira discussed transcreation in a 2020 book chapter , and Mar Díaz-Millón and María Dolores Olvera-Lobo discussed the term in a literature review in Perspectives: Studies in Translation Theory and Practice. Simply put, it is a partnership to support people in adapting materials to fit their needs.

Recently, the LifeCourse Nexus partnered with the University of South Dakota Center for Disabilities, representatives from the Lakota Nation, and a South Dakota LifeCourse Ambassador to transcreate LifeCourse tools and materials for Lakota transition age youth. This collaborative journey of learning about the Lakota culture and history resulted in a customized trajectory and Integrated Supports Star tool, which is based on the beliefs, traditions, symbolism, and experience of the Lakota people. The Integrated Supports Star was designed to help people explore support services that will help them achieve their goals and vision for a good life. The Star focuses on five types of resources: personal strengths and assets, relationships, technology, community-based resources, and eligibility-based support services.

In Lakota tradition, seven is an important number, so the five-point Integrated Supports Star gained two additional sections, expanding the focus on personal assets and strengths. The emphasis on strengths honors the Lakota peoples’ understanding of disability. There is no word for disability in the Lakota language, so the focus is to help youth find their path. The design echoes traditional Lakota star quilts and the colors are derived from the Lakota Medicine Wheel. The new tools honor and speak to the culture they are situated in while maintaining the LifeCourse emphasis on exploring, planning problem-solving, and advocating. The tools were presented on several reservations and are being piloted for use in educational settings with Lakota transition- age youth.

Transcreation sometimes involves customization that acknowledges differences across race, ethnicity, gender, and other aspects of identity in the way people experience certain events. Recently, the LifeCourse Nexus partnered with young adults transitioning out of foster care to adapt the framework and tools based on their diverse experiences. Through a series of focus groups, youth shared about the process of leaving the system, what was working, and what they felt was missing. The youth, representing diverse races and cultures, provided continuous feedback and worked with the LifeCourse Nexus team to create a customized foster care transition toolkit.

LifeCourse Ambassadors are instrumental in the process of transcreation and implementing the framework into practice. Ambassadors are advocates, family members, and professionals in a variety of roles who have taken a deeper dive in learning about and applying the LifeCourse principles. They are a diverse group representing many cultures, races, ethnicities, languages, ages, socioeconomic groups, and spiritual practices. Leveraging knowledge from ambassador training, as well as from their own lived experiences, ambassadors are powerful change agents. They have become our facilitators, taking LifeCourse into their communities, supporting people and families to use the framework to envision, plan for, and take steps that lead to good lives. One parent, a LifeCourse ambassador, facilitates groups of East African families, some of whom primarily speak Amharic or Somali. As both a member of the community and facilitator, she hosts small meetings in the groups’ preferred language and adapts activities and content to their cultural understanding of disability to help families understand how to use the tools and framework for problem-solving and planning. The families note that the emphasis on visuals and imagery has been an important part of connecting with the framework and tools, providing an entry point for customization. With the framework and tools as her foundation, the facilitator adapts the activities and training to the groups’ preferred language and cultural understanding of disability. This process allows the LifeCourse team to respond to the specific needs of diverse communities and enhance the framework and tools overall.

As we work toward equity and inclusion, we understand that opportunities for accountability on existing programs and tools must occur alongside transcreation and development. Recent conversations with stakeholders who emigrated from China and Latin America to the United States have provided valuable feedback on cultural considerations that challenge some aspects of the framework and tools. It is an important reminder that any conversation about someone’s life and future is incredibly personal and must be driven by that person’s values and beliefs. Our lived experiences and personal and collective diversity are our most valuable assets. We hope that the Charting the LifeCourse framework and tools, driven by collaboration, cultural humility, and constant transcreation, will continue to support the rights of all people.