Self-determination is a powerful and transformational bridging concept. It has great potency to promote personal recovery and independence for large numbers of behavioral healthcare and intellectual development or developmental disabilities (ID/DD) clients. It also can bridge from a care system rooted in the past to a future one based in person-centered care.
Today, self-determination is the focus of initiatives in both the public and private sectors. SAMHSA and CMS have projects underway to develop and test self-directed care and self-management of care resources. Optum has developed an initiative to transform care for ID/DD clients via a broad-scale self-determination strategy. Many recovery-oriented systems of care throughout the country are beginning to experiment with these possibilities. Clearly, these efforts are very energizing and full of exceptional promise.
How can we embrace this vision and bring it to reality? In earlier commentaries, I have discussed the holy trinity of health literacy, health activation and self-determination. Each of these builds upon its predecessor: health literacy is a prerequisite for health activation; health activation is a prerequisite for self-determination.
In our care system, we will need to introduce the person-centered care tools that can promote this progression toward self-determination. A few moments of reflection will assure you that peer support to develop health literacy, supported decision-making on health activation, and ultimately self-directed healthcare are key tools that can be employed sequentially to help clients move from dependence toward independence. When employed in a strong recovery-oriented environment, they can be even more powerful.
Yet, self-determination not only will require self-management of one’s illness and one’s healthcare, but also self-management of one’s life in the community—one’s friends, housing and job. To accomplish this, we will need to transform our current concepts of how rehabilitation is achieved. Today, we create opportunities for clients; tomorrow, we will need to help our clients create their own opportunities. Our role will move from center stage to a position of support.
The same progression toward self-determination used for healthcare will be required for social services. First, peer interventions will be needed to develop social service literacy. Then, supported decision making can be introduced around social services. Finally, clients will be able to engage in self direction of social services.
At the policy and system levels, true self-determination also will require transformation of payment systems for healthcare and community supports. Instead of providers being paid by a third-party insurer, the client will pay for care and supports. How this can be organized effectively across different payment systems and how it will operate in practice both remain to be worked out. An urgent need exists to develop practical and implementable models to achieve this goal.
Self-determination will encourage clients to regain their own voices, both literally and figuratively, and to take control of their own lives. Regaining one’s voice, developing friends in the community, and inclusion in community activities are essential prerequisites for personal self-respect and for achieving recovery and independence.