Ikigai: Giving Purpose to People with IDD
by Joann E. Douziech B.Ed, M.Ed, M.Cert
Seeking a high quality of life is a common pursuit among people, including people with intellectual and developmental disabilities (IDD). IDD are natural and beautiful presentations of the diversity within humanity. When IDD is valued and respected, people with IDD are viewed as members of society worthy of the dignity and respect assumed for everyone. People with IDD possess unique and complex features that are expressed as an array of gifts as well as challenges. These gifts and challenges are defined and impacted by the context within which each person lives, and in relation to their environment. People with IDD are worthy of and benefit from specialized, intentional, and strategic support throughout their lifespan to ensure their desired outcome of an optimum quality of life.
Models of IDD that influence views of people with IDD and subsequent models of support have been impacted by ever-evolving understandings and philosophies. The failures of historical beliefs have influenced a human rights-based approach. The current global advocacy movement advancing the rights of people with IDD emphasizes a high degree of choice over life decisions in multiple domains.
This rights-based approach assumes competency and favors independence and choice. At times, a high degree of choice can result in a variety of negative health and well-being outcomes for people with IDD. A priority of autonomy and independence do not necessarily guarantee high quality-of-life outcomes for people with IDD. This type of approach appears noble, but it can leave individuals with IDD on their own, navigating their world without necessary support, at increased personal risk to themselves. When individuals and agencies relinquish their responsibility to provide comprehensive and necessary support, the result is a custodial level of care with limited possibility for quality of life.
What is the Ikigai framework?
The Japanese concept of “Ikigai” (ee-kee-guy), is a concept that translates as “that which gives your life meaning and purpose.” The elements that define Ikigai are relevant for support that achieves outcomes aligned with quality of life for people with IDD.
The Ikigai framework has been developed by the author to address a balance of recognition of the complexity of IDD, with the universal pursuit of a fulfilling life, and an overall outcome goal of achieving optimum quality of life. Ikigai has as its first tenet, a clarity and honesty regarding the capacity of the person with IDD. The IDD is not a condition that the person “lives with,” or “experiences”. Rather, the IDD is seen as a valued, respected and intrinsic part of the person, because it contributes to their gifts and strengths as well as challenges.
The Ikigai framework uses a hierarchy of needs expressed as safe, healthy, happy, fulfilled. A pedagogical approach is employed to implement the framework with frequency, intensity and duration, with supports which are provided throughout the lifespan. A belief that people with IDD are capable of learning and worthy of instruction, provides the foundation for a comprehensive model of support throughout the lifespan. Supports are developed, delivered and monitored with a focus on outcomes that are aligned with optimum quality of life. Choices are meaningful, authentic and commensurate with capacity.
Marge’s Principle is a precept that guides the application of the concepts of choice and autonomy, and states: The safety, health, and well-being of an individual supersede choices or actions that exceed the individual’s comprehension of immediate or cumulative harmful impact.
The 3 pillars of support
The model is based on three pillars of support domains: environment, skills and approaches. The process of engineering the environment provides the person with relevant information as well as expectations. Visual cues, organization of furniture, and shared and personal items are intentional and give the person safety, security, and enhanced meaningful access. Orientation to the day and scheduled events as well as expectations provide context for the person with IDD. In the early years, these supports facilitate language development, learning routines, ease of locating desired items, and enhance meaningful interaction with toys and people in the environment.
An organized environment is important for creating a sense of predictability, security and meaning. These supports also reduce the working memory load which frees cognitive energy to be directed on their activity or interaction at hand. Organized materials within tasks and routines support engagement, achievement and enjoyment. Strategic and thoughtful attention to the environment lessens the reliance on staff, caregivers and others as the main source of information, and the environment conveys valuable information in a consistent and clear manner. The engineered environment promotes purpose through meaning.
Skills acquired through life enhance daily function and can become tools to express one’s vocation, passion and personal achievement. For people with IDD, the lifelong pursuit of achievement requires intention and commitment. The individual who functions at their lowest and innate level of development most of the time will miss opportunities for skill development, learning and attaining levels of achievement associated with happiness and fulfillment. Skill building and especially skill maintenance require intensive and intentional focus to ensure that the individual receives explicit instruction on acquiring and maintaining skills throughout their lifespan.
Skills such as numeracy and literacy, as well as adaptive skills and skills of daily living, require explicit instruction and support. Teaching executive function skills like problem-solving, planning, self-regulating, memory, intrinsic motivation, managing emotions, and self-awareness lay foundations for life-long application. Frequency, intensity and duration are measures used to assess the implementation of supports to ensure that the individual has access to strategic and intentional learning opportunities for a sufficient period of time.
Skills can take years to acquire, and once acquired, may require structured cues and support strategies to ensure maintenance throughout th lifespan. Independence is not achieved by the absence of support, but by the acquisition of composite skills of an activity, or routine. For the aging individual, being appreciated as a lifelong learner offers opportunities for new experiences that enrich and sustain quality of life. The experience of fulfillment is possible when one is valued as having the potential to learn, grow and achieve. It is at times necessary to balance momentary happiness and short-term challenges to achieve long-term quality of life outcomes associated with health and well-being. The experience of success and reaching one’s potential creates self-worth and pride that are unrivaled by any external bestowment.
Approaches in the Ikigai model describe the strategic verbal, paraverbal and non-verbal communication used by staff and caregivers. Support and interventions have a wide range from proactive to crisis-level responses. Attention to specific wording of cues elevates the cue from talking to teaching. Consistency is often identified as a vital component of providing support for individuals with IDD. Often, this consistency is thought to be best achieved by having the same caregiver in the environment. This approach can lead to a dependence and an over-reliance on the personal relationship between the individual with IDD and their caregiver that does not provide a positive outcome for the individual with IDD. Effective support can be achieved by careful attention to the provision of consistent cues, promoting success in a wider variety of conditions. Understanding the person’s individual characteristics, life stage, circumstance, values and dreams informs the delivery of respectful and effective support. This understanding of the person with IDD facilitates the provision of anticipatory measures and supports that the person may not be able to articulate as a choice, preference or desire, but enhances their quality of life.
The primary purpose of the Ikigai model is to support optimum quality of life outcomes for people with IDD. The three domains of the model organize interventions to provide a comprehensive approach throughout the lifespan from the early years to the senior years. The goal is to bridge the distance between what the person knows and what they need to know so they can access, experience, learn, evolve and become the optimum version of self. Bridging this distance between what the person knows and what the person needs to know facilitates the person’s safety, health, happiness and fulfillment, leading to their best quality of life. Daily activities are more than recreational and should include meaningful engagement with the person’s natural environment that is enhanced by interpretation, teaching, structured access and feedback to support learning, achievement, and enjoyment.
This Ikigai model uses the analogy of looking through the lens of the person and through the lens of IDD to inform support. IDD impacts how the person sees, processes, interprets and responds to the world. Knowledge of the characteristics of IDD informs the selection, provision and monitoring of the impact of the applied specialized approaches. Knowing the person’s strengths, needs, values, dreams, gifts, and goals provides valuable information about the nature of support that will best achieve optimal quality of life outcomes. This becomes increasingly challenging when the person with IDD is non-verbal, so understanding of the person is developed by objective observation and interactions to provide this insight. Understanding what is important for the person, as well as what is important to the person is vital. It is this blending of science and art that determines the successful and most effective formula for support.
People with IDD are often described as displaying challenging behaviors. Models that require behavioral support plans and interventions reinforce this perception. By contrast, the Ikigai framework provides an intellectual disability support plan and the need for behavior support plans is diminished. Knowledge about IDD can predict the supportare required. The person’s environment, skills development plan and staff approaches are developed and cohesively integrated and implemented proactively. When there’s less of a need for a behavior support plan, people are viewed as people with IDD, rather than people with behavioral problems. The Ikigai paradigm of IDD goes beyond identifying the function of a behavior but delves deeper to create insight and understanding of how the world occurs for the person. In this model, behavior is defined as the expression of cognition, based on the universal understanding that our behavior is correlated to how the environment occurs for us. This ensures that many behaviors that would be considered challenging are aligned with IDD and therefore expected, so a proactive supportive framework is developed. The responsibility is on staff and caregivers to make the adjustments required to not only accommodate the individual with IDD, but to create a positive and supportive environment in which the individual will thrive.
The Ikigai framework exists to address the gaps and limitations on quality-of-life outcomes that are based on philosophies rooted in rights and freedoms alone. The framework identifies the specific features of IDD and articulates interventions in a way that moves support from incidental to intentional. This shifts the perspective towards people with IDD to align with an elevated level of respect for their rights and our responsibilities. Quality-of-Life is a paradigm that highlights the universality of all human beings in the pursuit of a fulfilling life. Understanding that “same” is not “equal”, is critical to achieve equitable outcomes. The pursuit of typical life experiences is noble but requires a lifetime of intentionality and support to achieve. People with IDD have the right to flourish and we have a responsibility to ensure that this is possible.
