Begging for Details

January 1, 2008
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To be truly empowered to make their own decisions, service users need information about their care options

We can't help but notice that something BIG is missing in most of the conversations about person-centered planning and self-directed services. The missing link is the good information people need to participate in a meaningful way in their treatment planning. Although we're focusing this conversation on those interested in recovering, perhaps we should expand this to families and professionals as well, since being well-informed equips all of us to expand and understand the available options and choices.

So what's at the root of this issue? Why aren't people who are supposed to be self-directing their services given enough information to do this responsibly? Well, several answers are lurking around here, so let's see what we can turn up.

When we ask service providers these questions, they often say that there just aren't any good resources available, that people who receive services aren't interested in this information, or that they do give people information all the time and this isn't an issue. Yet we have discovered that people receiving services often have no idea that any resources or options existed when they were asked to make decisions about their service plans. They also don't know how to get information on these options. They may remember seeing a “consumer handbook,” but it likely was some time ago.

In addition, no one typically tells family members much of anything. They often are seen as an “interference,” and their potentially great contributions frequently are lost in frustration. Sometimes they try to help anyway but, because they don't have much good information readily available, the things they do to help actually stop their loved ones from getting better.

Then there are the conspiracy theorists (sometimes even we are members of this group). This group gives the behavioral healthcare system way too much credit, thinking that someone actually has the time, and goes to the effort, to deliberately interfere with the transformation that recovery programming can bring. If we asked this group why people aren't given information on the options and choices that could promote recovery, they would say that people aren't given this information because, in truth, most providers really want to keep making decisions for people receiving services.

Many providers still do believe they know what's best for the people they serve and prefer to make decisions for them. Yet without good information, people cannot make good decisions; consequentially, recovery is delayed, since being able to make choices is one of the keys to the recovery process.

That's a lot to think about, but let's not get stuck in it. Instead, let's look at the kind of information people need to participate in a significant way in their treatment planning. Basically, they need to know their options at each point in a treatment plan. This usually includes choices about medications, a place to live, schools, recreational opportunities, vocational supports, safety elements, and service providers. Beyond just knowing what these options are, service users need to know if the options are any good.

It would be useful if the options were provided with rankings based on outcomes, so service users could make decisions based on evidence. For example, in such an arrangement a person would know that if he chooses the “ABC vocational program” he would have a 67% chance of getting a job within three weeks; if he chooses the “XYZ vocational program” he would have an 80% chance of getting a food service job within three weeks. Wouldn't this type of information prepare all of us to make better decisions?

People receiving services also need information on the role their family members can play in the recovery process. Most people who receive public behavioral healthcare services have damaged relationships with their families, leaving them disconnected, pained, and/or confused. It could be a big boost to the recovery process if service users and their families have information on how to begin to bring healing and renewal to these relationships.

Oh, we forgot to mention one other group earlier: the Cynics’ Club (we hate to admit it, but we've shown up in this crowd a few times). This club has a huge membership and the meetings are crowded. Not much ever comes of what's discussed, since there are almost never any action items on the agenda. The purpose seems to be to agree that nothing can get better, only worse; once agreement is reached, members wander off, satisfied that they cannot make a difference no matter what. They believe it's best to just stick with the status quo.

But that attitude is incompatible with a dynamic, recovery-oriented service system. We need everyone—service users, parents, providers, and even conspiracy theorists and stubborn cynics—to participate in the war against missing information. If your organization lacks good informational resources for service users and families, create them. If you don't offer people options, develop them. If staff are unwilling to make this happen, do it yourself. Once we get information to people, even about the smallest of choices, the recovery process will be immediately enhanced. No excuses. Let's make this happen.

We recently met a remarkable guy who took this challenge. Paul Cumming, himself in recovery, is employed by Trilogy Integrated Resources, LLC (see sidebar) to do whatever it takes to get good information to people interested in recovery. He told us:

To have consumers and their loved ones be able to educate themselves as their experience with the mental health system raises new questions is the best way to recover as well as the best defense against stigma. They become armed with knowledge that mental health transformation can truly be driven by consumer desires and expectations.

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