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Implementing Self-Determination: Perspectives from Eleven States

What does self-determination mean in the context of a human services system?

Although there is no one definition of self-determination, there are key concepts and values that underlie most states' attempts to empower the persons with developmental disabilities who are consumers of services and their families. Every services system will operationalize self-determination in ways that make sense in it's own system but there are some themes around which self-determination revolves:

• Consumers and families make informed choices about their own lives
• Consumers and families have control over these choices
• Consumers and families have individual budgets with which to make decisions
• Supports and services are designed to fit the preferences and desires of consumers and families
• The intent and outcomes of supports and services are determined by consumers and their families (and chosen advocates)
• Self-determination is about sharing power and control and negotiating relationships among consumers, families, advocates, providers and support coordinators

What does this mean in terms of operating a human services system?

Self-determination is multi-dimensional. Implementing practices that enhance the possibility of self-determination means re-thinking and potentially changing many facets of the services system, from what responsibilities families share to how payment rates are determined for services. To each of the stakeholders in a system, implementing self-determination may mean different roles and responsibilities and different risks; self-determination does not mean a unitary response for all. Self-determination plays out for each person differently, based on the situation and preferences of that person. For one person, a willing and capable parent may take on much of the support coordination role: for someone else, who may not have close friends or family, a paid case manager—who understands how to assist people to make informed choices-may hold this responsibility. One individual may prefer to hire and fire their own support staff, another may prefer an agency to do this for them. A system based on self-determination permits supports and services to be configured and delivered in a multitude of ways by a variety of agencies and individuals.

Operationalizing and implementing self-determination takes time and commitment at every level. It is not a one-size-fits-all package; the details of how self-determination will work must fit with the aims, culture and resources within a state. While clearly states can and should learn from each other, how Washington decides to make self-determination a reality must be tailored to what Washingtonians want as well as build on the elements and structures of the current system that are working well. The details of self determination in Washington must fit the culture and practices that are acceptable to stakeholders within the state.

What are key elements in operating a system that supports self-determination?

• There is an understandable and equitable method for allocating resources to consumers and families
• Money follows the person: that is, money is portable and does not "belong" to services providers nor case managers
• Rate setting, contracting and payment processes allow for individualization and flexibility
• Support planning is a partnership among consumers, families, providers, and support coordinators
• The frequency and intensity of support coordination is tailored to reflect the needs and preferences of individuals and families
• Quality assurance is multi-faceted and includes significant participation from consumers and families in deciding if the outcomes and quality are present in the supports and services used
• System rules and regulations, including provider standards, permit flexibility in designing supports and services and allow for creative approaches to supporting individuals. These approaches include enhanced roles and responsibilities for families and consumers in coordinating and directing supports and services (if they so choose) such as purchasing alliances, voucher or fiscal agent systems
• System practices create a more diverse marketplace where consumers and families actually have a variety of support and service options from which to choose
• There is strong commitment (including financial resources) to training for all stakeholders in the new roles and responsibilities that come with implementing self determination, including state administrators, case managers, providers, consumers and families

What self-determination is not

• Self-determination does not mean no accountability for how and why public funds are being used
• Self-determination does not mean putting vulnerable people at serious risk in the name of choice and control
• Self-determination does not mean "whatever you want, at whatever cost"
• Self-determination is not just a little "tweaking"—it is major systems change that builds on what's already working within a system and re-engineers what's not

Modified: Wednesday November 02 2005

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