The Institute for Health Quality and Ethics

Research and Publications in Self-Determination

"When people with a disability are separated from community, they are perceived as different, their quality of life is called into question, and their basic human rights become endangered. When people are controlled by systems, they are at risk of exploitation, victimization, and disempowerment. When the system of services extends beyond a certain stage and impinges on self-determination and community, increased personal suffering and social dissolution sets in."

-- Interrobust VI, Connecticut, April, 1993



Access to Materials

We strive to make all of or content available to the public free of charge.  Most of our materials are available for download in pdf format here on our web site.  However, we will also be making some of our materials available through a publishing service, such as Createspace, for a nominal fee.  This is in response to requests from organizations and individuals who are interested in obtaining access to professionally designed workbooks and publications for use in workshops, in educational settings, and in presentations and seminars.

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Coming Soon

Selling Grandma:
How the For-Profit "Nursing Home" Industry Has Commodified the Aging and Stripped the Elderly of Their Civil Rights



Long Term Services and Supports (LTSS) for Individuals With Disabilities:
The Impending Collapse of Medicaid

by Thomas Nerney

In the most expensive "human services" system in the world, we require "beneficiaries" to remain impoverished and to sacrifice basic human and civil rights.  Not only does this approach fail those it purports to benefit, but its unnecessarily high costs in the face of significant demographic changes is bankrupting the entire system and wasting scarce resources.

Lost Lives: The Paucity of Quality in Human Services

by Thomas Nerney

Quality assurance systems have ignored every critical component of quality that any individual would consider to be minimally adequate. The unspoken “bargain” made with those who need support is to require everyday freedoms to be surrendered in return for that support. This raises a core public policy question: Can we ever have quality in a system that does not support freedom?

Tools of Self-Determination

by Thomas Nerney

Real Life Quality Standards
by Thomas Nerney, Pat Carver, and Kathleen Kovach

Guaranteeing the Promise of Freedom: Creative Individual Budgeting
by Thomas Nerney, Pat Carver, and Vickie Vining

Filthy Lucre: Creating Better Value in Long Term Supports
by Thomas Nerney et al

All communities have as members people with disabilities. They are people of worth and value. They belong to family and neighborhoods. They are citizens, fellow workers, customers, and parishioners. They are "one of us." Members of our families, our churches, our neighborhoods, people with disabilities who are our friends, our co-workers, our customers, are unwittingly being harmed.

With the growth of self-determination projects across the country and the wide adoption of the principles of self-determination, it is helpful to step back for a moment and reflect on what we have learned about the technical and structural issues associated with truly successful individual budgets, support brokering, and fiscal intermediaries. Not every issue is yet crystal clear and it is anticipated that some ambiguity may remain especially in those projects that are still experimenting with systems change.

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