This article is part of 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 Services for the UnderServed (S:US) a New York City-based nonprofit that is committed to giving every New Yorker the tools they can use to lead a life of purpose.
There was something refreshing about talking through the way the delivery of care has transformed over the last few years. Through our lives, we have had to navigate not only systems of healthcare and services, but also our own resilience and strength. To some degree, everyone in our discussion group has experienced homelessness, trauma, mental illness, and other challenging circumstances.
While we may not have all been familiar with the term ‘system transformation’ or the exact names of each of the services we’ve been provided, our discussion made it clear that we have seen a significant change in the way we have received care over the years.
Our talk revealed a range of experiences: from confusion and continued frustration in working through the current structure, to life-altering revelations and realizations that have emerged from our interaction with the structure of care. Our needs are very individual, so each of us feels differently about what quality support and services mean. Still, when asked whether the system today has led to better care, more access, improved health, and better experiences for us, our collective answer was a definitive ‘yes.’ Although there are more aspects to system transformation, Care Coordination is a service that the majority of us were most familiar with, so we touch on that particular service the most in this piece.
Below are some of the main themes of our discussion. Each of the quotes in this piece represents sentiments expressed directly by one of us.
How System Transformation Has Impacted Us
Accessing services that can change our lives: For a few of us, after finding stability in our health and housing, for some time we still found it difficult to take full advantage of the services available to us. The assistance of Care Coordinators has been transformational in helping us to realize our deeper needs, find specialized primary care and mental health providers, and get the most out of available care.
“I was given housing at S:US because I have veteran status. I had housing but I still wasn’t settled. That’s when I got introduced to the Care Coordinators. I now have a Wellness Coach and a Care Coordinator, because my mind doesn’t remember the way that it used to. My psychiatrist told me that I need a special type of therapy called DBT (Dialectical Behavior Therapy), but I didn’t know how to find a list of people who specialize in DBT. My Care Coordinator helped me find someone and stayed on me to make sure that I kept that appointment, because there was a six month waiting list. My Care Coordinator has really helped me out. She had resources at her disposal that I could utilize.”
Staying on track in scheduling, keeping, and traveling to appointments: A big part of having full access to care involves following through on logistical tasks. These things may seem simple but can prove tedious when the system is confusing, when we have to juggle schedules, when we don’t have a way to travel to an appointment or meeting, or when we are simply feeling discouraged.
Care Coordination and the services that have become available over the last few years have helped us immensely with following through on appointments. From reminder phone calls, to car services to help us get across town, these simple services help us follow through with care and stay motivated.
“Back in the day when I first came here, I wasn’t going to any appointments or groups. I didn’t care. I just got my apartment and I was happy that I wasn’t on the streets. But everything changed and it’s gotten much better…I don’t want to miss anything because I want to progress.”
The reassurance of knowing that services are available: Thinking back to the way services have changed, we also realized that, in some ways, transformations in care have paralleled changes in how society speaks about mental health. Initiatives like New York City First Lady Chirlane McCray’s ThriveNYC, acknowledging mental health, educating the public that mental illness is nothing to be ashamed of, and promoting available services are not only helpful in breaking stigma, but also help us feel empowered and more informed.
For those of us who have less of a need for services like Care Coordination and Home and Community Based Services, we spoke about the ways that we draw on our own personal resilience—our own tools and resources to deal with our health challenges.
“I’ve had six therapists in the seven years since I was released from prison. I’ve developed a connection with every therapist I’ve had. When they would leave, I would maintain my balance by taking my medication and doing my therapy…And I haven’t utilized or needed a Care Coordinator. I practice something called mindfulness, which, to be honest with you, has been one of the major factors in allowing me to stay on the true right path: sober, no drugs, no crime…But if I ever reach the point where I believe I need a Care Coordinator, I know who to call. I know about these services and am aware that they are available. If I ever need it, I’ll take advantage of them.”
While our experiences have been mostly positive, we still see challenges in the current system of care. Some of us expressed confusion about all the services available to us, not knowing everything at our disposal, and some conflation about the different roles of staff and providers. Turnover among staff and providers can also be difficult. It is hard when you find rhythm and establish a good relationship with someone, only for them to leave and not be immediately replaced. As one of us expressed, “In the last three-and-a-half years, I’ve had four psychiatrists and one psychologist, and every time I turn around, they are gone. Then you have to start the whole process over again.”
Still, we see immense value in the goals of system transformation: better care, improved health, lower costs, and improved patient experiences. We look forward to seeing how care will continue to be transformed to move us closer to full attainment of these goals and happy, healthy futures.