Sometimes, even in the throes of health system transformation, you get a “do-over.” Four years into a major overhaul – from a statewide fee-for-service structure to regional nonprofit managed care – Alabama Medicaid found itself mired in budget overruns, legislative doubt, contractor misgivings and clean-up after a bad actor. As one of two organizations authorized to nominate consumer representatives to the new regional care organizations (RCOs), we at Alabama Arise shed no tears when a new governor pronounced the RCO plan dead.

Recruiting consumer representatives is hard work. (We recruited 20 from around the state.) So is equipping them for effective service, and encouraging some of them to take on leadership roles. (We provided training, with Community Catalyst’s help, and set up an online sharing space and toolbox.) But maybe harder still is keeping far-flung, busy consumer representatives interested, committed – and hopeful – while the transformation initiative they’re geared up to enhance grinds to a halt.

We learned, as this particular design failed, that a new consensus had developed around the general concept of Medicaid reform. Going back to the status quo ante was not an option. So now we’re in the do-over phase, hammering out a plan that will preserve some elements of the RCO vision while avoiding others. The challenge for advocates is to preserve the best of the RCO consumer voice provisions and improve where the earlier plan was lacking.

The core idea of having a Consumer Advisory Council (CAC) for each region (there will be seven in the new plan, instead of five), with at least one CAC member serving on the regional governing board, is a keeper. We’re working to get a baseline of two consumer board members, but the response so far is mixed. One irony we’re experiencing is that the regional organizations (large providers and other investors) have been much more receptive to our call for a stronger consumer voice at the table than Medicaid officials have. We’d prefer to have those protections baked in, but good will is nothing to sneeze at, and it sets a good precedent.

One improvement that Medicaid has already agreed to make will fix a weird limitation in the first plan. Back in 2013, the law that created RCOs provided for Medicaid “beneficiaries” to serve as consumer representatives. Advocates assumed this language would also allow for parents and caregivers to serve, since more than half of Alabama’s one million Medicaid beneficiaries are children. However, Medicaid insisted on a literal interpretation, barring any proxies from this important role – and leaving 600,000 children unrepresented! Under the new plan, Medicaid has lifted that restriction and opened the consumer representative opportunity to the broad constituency of parents and caregivers, many of whom are already engaged advocates for their children.

One challenge we’re working to address is how to make the task of “representing” the concerns and perspectives of thousands of consumers less daunting for the individual representative. Each appointee, of course, brings a wealth of applicable firsthand experience and insights, and people recruited for such a role typically have strong community connections. Training can sharpen the representative’s “ear to the ground,” but a ten-county region is big. That’s why we’re aiming to add a new layer to the consumer feedback network by identifying three to five “community contacts” across each region.

We’re looking for natural connectors who are willing to serve as two-way conduits of health information – both reporting out the representatives’ updates and questions through their circles and “reporting in” local responses, as well as other health system concerns and developments. We’re exploring appropriate ways to support and acknowledge their involvement.

Through these and other incremental steps, we’re trying to get Medicaid to embrace a central truth about the reform plan: You can’t transform the way consumers use health care without a strong consumer voice at the table.

Jim Carnes, Policy Director, Arise Citizens’ Policy Project