InvisALERT Solutions – ObservSMART

Consumer Perspectives on Change: for Better or for Worse

We were asked to consider whether changes in the way we receive and respond to behavioral health services has been for better or for worse, now that Medicaid Managed Care is the order of the day. It was a tough conversation because at the beginning, some of us really felt like we hadn’t even known that much of a change had happened, but as we got into things, we realized things have changed – and sometimes not for the better.

Another SUS focus group wrote about Adapting to System Reform in the 2016 summer issue of Behavioral Health News, and back at that time the writers made some very important points: that health reform was confusing, that decisions made by government and policymakers without us are never okay, that communications about changes need to be understandable and clear and that housing and supported housing is absolutely key. Those points are just as important today as they were when they were written, and even though it’s been over a year since Managed Care officially appeared on the scene, we’re still struggling with lots of issues.

Our group wound up coming back to a number of the points that were raised by the earlier consumer group, but now we began to get even more clarity about some specifics.

First, there is still a big problem around how changes are communicated. All of us agreed that the letters we get, when we get letters, are very confusing and written using language that seems to be much more for professional administrators than for people who are receiving services. It’s very hard to tell what our various health plans writing to us are trying to convey, except that usually it’s not good news. The prior peer group that wrote about this had the same experience and what happens is that either we just toss the letter in the can, which may not be such a good idea, or we bring them to a case worker to interpret. There has to be a better way – and we wonder whether the Managed Care companies have ever considered asking one of us peers to review the kinds of correspondence they are sending to peers? If they did, we might all be getting letters we could actually understand. This may sound like just a small point. After all – it’s only a letter – but actually it’s a big, major point because the information contained in these letters can sometimes mean the difference between moving in a good direction or moving in a disastrous direction.

Communication around change also has a lot to do with where people are in their lives when a communication needs to happen. For one of us living in a shelter, it was impossible to receive letters and it just became a big nightmare trying to understand how to get the medications that were needed. For another who was in and out of emergency rooms all the time, having someone making an approach about insurance just when you’re at your very worst isn’t a very helpful way to communicate. The one thing we know for sure is that communication really matters, and we’ve got to understand what’s happening before it happens so we can plan and be prepared.

One specific change in the system is that the amount of the vouchers for over-the-counter drug store needs has been reduced, and sometimes, reduced drastically. In one case, it went from $100 a month to $40 a month, then up to $55 a month – all without explanation. And certain drugstores honor these vouchers and others don’t, leaving us to have to look around and make sure we can get our needs met when a lot of times, we can’t.

Another change that has been difficult for many people is that there seems to be less coverage for us to get help from mental health professionals who are not our psychiatrists. Seeing a psychiatrist once a month is important, because this is the person who is managing our medications and making adjustments based on how we tell them we’re doing. The problem is that there are a lot of limitations that prevent us from seeing a mental health professional when we need to, like once a week, and we are usually told that we only have coverage on a very limited basis. This backfires on everyone because when we hit a rough patch and don’t have anyone to talk to, we wind up in the emergency room and that’s exactly the opposite of what everyone wants.

Case managers play a really positive role in many of our lives because they are there for us, making home visits, checking on how we’re really doing on a day-to-day basis, and helping us navigate the system. We all felt that if we had more case managers on staff who were not so pressed for time with such big case-loads, we would be working with a much more efficient system and people would be in recovery in a more solid way.

For one of us, the predominant life problem was addiction, and after having lived on and off the streets for many years, this individual is now in stable housing, with supports, with yoga, with a writing group, with medication management – and with a dog. After almost a whole life-time spinning in circles, life is now starting to make sense and have some hope attached to it. When we all sat and listened and focused in on this one person’s life story, the thing that emerged is that in some ways, Managed Care has done a good job. The reason comes down to care coordination.

The way Medicaid used to work was like a credit card. You used it when you needed to use it, and sometimes, people abused it. Now, Managed Care came in to really manage our care – and save money. The problem is that saving money sometimes seems to be the first order of business – with managing care coming in second or even third or fourth place. That’s never good, and we see it day by day. Doctors and psychiatrists are squeezing in too many patients, and sometimes they only have 15 minutes for an office visit. Waiting rooms are packed with people and everyone is on overload.

At the end of our focus group, we were asked to talk about what we would change if we could wave a magic wand. All of us pretty much had the same answer: we need to put the real care back in Managed Care, and we need to make sure that care comes with care coordinators, understanding, compassion and support for everyone.

We also all agreed that right alongside Managed Care needs to be a better system of communicating about care, and not just from doctors and insurers to people receiving services – but between doctors themselves. Time and time again, this lack of coordinated care between providers just seems to bog down the system and make things frustrating and slow when they don’t have to be.

We all acknowledged that there really are lots of services out there, and that sometimes, we just don’t know how to access them. If there were one word that best summarizes the biggest need in this changing word – it would be communication. Once we get that right, a lot of other things will fall right into place.

This article is the fourth in a quarterly series giving voice to the perspectives of individuals with lived experiences as they share their opinions on a particular topic. The authors of this column facilitated a focus group of their peers to inform this writing. The authors are served by SUS (Services for the UnderServed), a NYC nonprofit that is committed to giving every New Yorker the tools they can use to lead a life of purpose.

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