Why “Nothing About Us Without Us?”

It’s not rocket science. If you want to have the best quality and most efficient system of human services, then you have to engage those who use these services in the planning and goal-setting at absolutely every level. It is a crucial part of quality improvement that a company or service agency be well-engaged with its customer in order to best know how to serve him or her.

So what have we been missing?  What do we need to have a system that supports self-responsibility, growth, independence, and a better quality of life in our state?  Frankly, many important concepts are not characteristic of North Carolina’s community culture or its service culture with few exceptions.

  • The respect of the role of self-determination as a human force that guides us and motivates us to grow–this applies to all of us, whether we have a disability or not.
  • Inter-personal engagement between service users, administrators, and service providers that result in valued relationships, then goal-setting and problem solving.
  • The application of the ideas and expressions of consumers in designing, developing, and measuring the quality of our services and system.   Until this happens it is apparent that decision-makers are satisfied with the status quo, at personal expense to people needing services and to taxpayers.
  • Service orientation that implies potential, strenghts, opportunity, and risk sharing rather than an orientation of persons’ limitations, deficits,  fear of change, limited risk for service provider or for service recipient.
  • System wide understanding (training) in psychiatric rehabilitation so that engagement, communication, assessment of readiness, shared decision-making, and growth can happen.  There has been no immersion in ‘recovery’ concepts through state-wide provider training.  Hiring of peers does not of itself reflect a recovery orientation. 

North Carolina now has three ‘recovery conferences’ happening across the state through partnerships with area AHECs (health education agencies that are generally focused on the clinical).  Yet to date, there has been no meaninful collaboration with consumers in planning these conferences and they cost so much that few consumers can afford to go.  This perpetuates recovery education in a vacume, without consideration of what providers truly need to know from the perspectives of concerned and knowledgable consumers. 

We have a Mental Health Block Grant that needs re-visioning.  We are in the midst of major state systemic changes.  And on the horizon, the federal government is urging us to develop “Health Homes” where mental and physical health care will be integrated.  There is so  much work to be done.

Yet there has been minimal partnering between thinkers who understand what it is like to live with a mental illness from the first person position and those who would be doing something “for” or “about” us. 

Do we want a better system?  Then this will have to change.

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