This article is the first 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.
As we sat together to discuss our perspectives on the topic of Adapting to System Reform, we soon realized that street homelessness, hospitalizations, alienation from family and community, substance use, sobriety and living with mental illness were all experiences we shared. We also came to appreciate that we were united by hope, resilience, personal recovery, and a strong desire to help others. And, while we were all “users” of the health care system, the reform of it was not something we had really had the chance to wrap our heads around.
Health care and the way it is provided affects everyone, and while New York may be a tough place to live in many ways, it also has one of the most comprehensive systems available to people anywhere in the country. The problem is that along with being comprehensive, it’s complicated and even the most fundamental step of applying for SSI and Medicaid can be challenging. Understanding how the system works, what’s available to whom, how to access it, and of course, figuring out what paperwork is needed can be huge hurdles to using the system. But the challenges go deeper than that.
In October 2015, Managed Care got brought into the world of behavioral health in a big way, but none of us feel confident that we understand what that really means and how this change affects our lives. The way this change was communicated was random and confusing. So rather than feeling empowered to make informed decisions about our health care, the lack of a clear understanding continues to promote our dependence on case workers and care coordinators for their interpretation of the changes. For government and policymakers to be making decisions about the very things that so profoundly affect our lives, without making us a part of the decision-making is at the root of the issue of how we adapt to system reform. For rather than adapting, we should be helping to figure out what adaptations should be recommended in the first place, if in fact the intent of the reform is to keep us out of ERs, prevent hospitalizations, and promote a better quality of life for us. To relegate our decision-making to simply choosing this plan or that plan is to do us a disservice.
One of our biggest strengths is that we all have lived experiences that put us in a position to help others and ourselves in ways that are unique and powerful. People who are trying to understand and navigate the system are much more likely to listen to someone who has taken that journey themselves. Someone with a lived experience can more easily build trust, speak with empathy and guide with compassion. For example, most of us had to either become homeless or be hospitalized in order to learn about what is available. It shouldn’t take hitting rock bottom to finally find out that there is a safety net in this city that could be accessed. Programs and system efforts that focus on catching people before they fall are the things that are going to help us move forward, and people with lived experiences can and should be playing a major part in sharing information about this if we are really serious about wanting to keep people out of hospitals, out of jails and off the streets.
But how do we get the word out? People with lived experiences want to be doing public service announcements, writing articles like this one, working alongside social workers, doing outreach and advancing engagement on a lot of levels. And, let’s talk about those letters that get sent out from “government.” Are they purposely written so that no one can understand them? We think we all got a letter talking about DSRIPs. It starts by saying there are no changes to my Medicaid and so some of us breathed a sigh of relief and threw it out. Others of us received letters talking about HARP, saw that we could opt out of sharing our information and so did just that, only to find out later that perhaps that was not the best move. Peers should be helping to write these notices so that the very people who need to understand them have a chance to do so. There is a real breakdown in the system and yes, even though a social worker or care coordinator might be available to walk us through the maze, communicating changes that are happening continuously is bewildering and we often receive conflicting advice. The system needs to do better.
We also know that we can’t have recovery without housing, and so to respond to the question of “adapting to system reform” we must speak about the central importance of housing. There just isn’t any possibility of stability without housing. There’s no address to get mail. There’s no pride of place. There’s no rest for the weary. There’s no anything. Housing is the umbrella under which everything else can happen. We need to get focused on this in a huge way, not just with set-asides in buildings and not just as an afterthought – but as a first thought. Any system without true, integrated, community-based permanent housing for people with behavioral health challenges is just a Band Aid.
And that leads us to our final point: discussion. We’re not doing nearly enough talking to each other AND to others in general. Awareness, education, and information sharing need to be at the forefront of system reform in order for it to really mean something and be effective.
In concluding we will summarize some of the thoughts we have shared so far and highlight some other suggestions:
- Any and all communication about the system needs to happen with our involvement in what’s being communicated, before it’s communicated. Don’t decide for us. Decide with us. Have our voice at the table.
- There need to be organized, facilitated, community conversations with information that is clear and easy to understand.
- Use every communication channel available. For people who are homeless, we can’t count on them learning about how to get help because a letter gets sent out. And for people who are living in shelters, a Public Service Announcement won’t do the trick. Communication needs to be customized and not a one-size-fits-all approach. Lots of us have smart phones and we could be getting information on social media. Why not try that?
- Information workshops should be set up in specific locations and made open to the public and anyone interested in understanding their health coverage options should know about these through a widely publicized advertising campaign, on subways, in newspapers, through social media and community venues.
And, last but certainly not least, we need to care more about each other. Education, information and empowerment can only happen from a place of compassion. There is still a lot of stigma about mental illness. We need to make a pact with each other that no one, because of the circumstances of their life, gets left behind in our current system or in any system reform. Having our corner in this newspaper is a great starting point.