Simply Ask: The Fundamentals of Consumer Involvement

by Laura Winn
September 27, 2010

Image of Laura Winn

In February 2009, HRC hosted an Expert Panel to better understand the needs of youth who identify as lesbian, gay, bisexual, transgender, questioning, intersex, and two-spirit (LGBTQI2-S) and are experiencing homelessness.

As a next step, the HRC team embarked on a listening tour of a handful of programs serving LGBTQI2-S youth. Our objective was to identify best practices for working with this population and to understand clear steps for implementation. During the listening tour, the HRC team held conversations with providers and youth consumers.

One young person, who I’ll call Christina, told us that it was wonderful that we wanted to talk to her and learn about her experience of services. She had spent a lot of time on the street, moving between different shelters for many years. She had met numerous caseworkers and had visited a series of youth centers. But in all that time, she said, “no one has ever asked me what I thought or what I wanted in the services I received.”

I was instantly floored by her words. How is it possible that a person who has been interacting with systems of care intended to improve her life has never been asked about the care she receives? This moment instantly grounded the meaning of consumer involvement for me.

Many of us understand that consumer involvement recognizes that consumers offer highly valuable lived experiences and knowledge of pathways to recovery. It contributes to creating person-centered, recovery-oriented program environments. I always interpreted it to mean that consumer involvement is about integrating people with experiences of homelessness into staff and leadership roles in service agencies. I am deeply committed to this level of consumer involvement, and think it is critical for all agencies.

However, Christina’s words made me realize that consumer integration is so much more. To create a person-centered, recovery-oriented program, we must start by asking consumers how they view their care. If we hire consumers into leadership positions, yet fail to have client voices heard at the service level, we miss the true meaning of consumer involvement.

I’m so glad someone finally asked Christina about what she thought. I could tell she felt empowered to have her opinion heard. I only wish it could have happened sooner. I learned many things during the listening tour. One of the most critical however was that consumers, even the youngest, have insightful opinions about the services they receive.

How can we learn about those opinions?

Simply ask.

To learn more, visit the HRC’s “Consumer Involvement” Topic page.

Interested in being a HRC Guest Blogger? Email us at generalinquiry@center4si.com

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Comments

10/11/2010 8:22:33 PM #

Image of Steven Samra

It's such a refreshing change, not to mention an honor, to have the lived experience recognized and appreciated for the value it brings to the discussion of policy.  Although stigma is still a huge problem throughout the behavioral health arena, the use of consumers as providers is greatly helping to end the stigma and dispel the myths surrounding so many of us.  

To actually be asked for our thoughts, our opinions, what we'd like and what we wouldn't like, seems like such a simple "no brainer" to most of us, that it's taken us decades to even begun to be heard is clear evidence that it is not.  Many thanks to the agencies and organizations that are not only promoting consumer-providers, but putting their money where their mouths are and actually hiring/utilizing us in meaningful ways.  

Steven Samra