By Åland Rinehart
My family has navigated complex medical needs since before I was even born. The story begins with my grandparents and their three children. My mother was the eldest, and her two younger siblings, my aunt and uncle, were both born with developmental disabilities as the result of an extremely rare genetic disorder. My mother’s experience as a caregiver growing up motivated her to become a pediatrician, and gave her a perspective that was unique from other physicians’. Those same experiences made her a passionate advocate for family-centered care, and would go on to fuel her expertise in care coordination, collaborative medical homes, and population health. Her work comes from a place of deep understanding of the challenges that families face. This was evident to me growing up, and I saw how much her specific and empathetic approach meant to countless families in our Vermont community. I like to believe that the same values, purpose, and desire to help, instilled in me from my mother, aunt, uncle, and grandparents, have shaped my own goals and aspirations into what they are today.
My aunt and uncle were some of the strongest, most humorous, and most optimistic people I’ve ever had the privilege of knowing, and they both touched the lives of so many. I deeply admire the way that my family brought a community together to give my aunt and uncle every opportunity they could. Like all young adults, they went through periods of transition into greater independence, which went hand in hand with a lot of organization and coordination on the part of my grandparents and mother. Though there were many in their orbit who were willing to help, it was still an intense and exhausting process to get everyone on the same page so that outside support could be helpful.
Inspired by my family’s dedication and advocacy, I worked as a Personal Care Attendant (PCA) for over 3 years, assisting a handful of families of children with disabilities throughout Vermont with their routine and day-to-day care. Though I was just one small part of the vast system that these families navigated, I got to experience what even a fraction of their daily workload entailed. I saw what juggling medications and dozens of monthly appointments looked like, what communicating between care realms (from school teams to out-of-state specialists) sounded like, and experienced a sense of what tirelessly advocating for one’s child felt like.
I witnessed my own and other families go through pure exhaustion, all the while having to repeat themselves again and again to make sure care professionals were on the same page… and there were certainly a lot of people to keep in the loop. From my experience as part of a care team, it took, in most cases, nearly a full 3 years to have met everyone that supported each family, and even then the team would continue to grow and change. I’d happen to be working days that a child had adaptive swimming or physical therapy, and I’d be introduced to a whole new part of the team. I’d often be with children after school, hearing about their paraeducators, bus drivers, or other important people they were excited to share stories about, but rarely had a face to put to the names. Not only were faces missing, but in some cases, and perhaps more importantly, helpful caregiving context was missing. For instance, I worked with a child who had specific needs around eating and swallowing, and some of the best information I received to support them was given to me coincidentally, as I just happened to be working the day of an appointment where I could hear recommendations from a specialist whom I hadn’t met before. There were so many people and places that I didn’t know about “Day 1” when I first met each family, and so many people and places that, for the most part, had no idea one another existed.
I have had two types of experiences with care coordination: one as a member of my own family, and the other as a caregiver in another’s. Meanwhile, my mother had spent more than a decade maneuvering those same experiences in her personal and professional life. She told me about her push to include care mapping (also known as “eco-mapping”) in her patients’ care. Care maps are tools, stemming from social work, that medical professionals use to visualize all of the people and places involved in a family’s care network. Care managers at her practice and medical office would use care maps as a way to identify family resource needs and to assess if a family is one surrounded by a robust support system, or if they have gaps in support that need attention.
I instantly felt like this was something that families really needed. Any way to quickly and visually understand what a family is juggling would be time-saving, empathy-building, and incredibly valuable to them and care teams alike. I wanted my family to have this tool, and I wanted the families I worked with to have this tool as well.
After learning more, I felt that the reason care maps were not as widespread or helpful as they could be was due to the fact that they were almost always hand-drawn; making them inaccessible, static, and quickly out of date. My mother and I felt strongly that modernizing this practice with technology would solve many of these issues. This conversation lingered with me, and though I knew that the families I was working with would love any tool that helped them keep track of their care needs and support network, I didn’t have the means to go further with the concept at the time. It wouldn’t be until joining Meraki, a few short years later, that a passionate group of individuals and I were able to pick up, dust off, and evolve the vision of helping families like mine and like those whose story I’d gotten to know so deeply.
As a purpose-driven team, Meraki has always been eager to solve systemic challenges through technology. When the opportunity to help families by leveraging care maps arose, the team came together to design, plan, and build a tool that could redefine the journey of care management. Whether it was navigating care for children, adults, or aging family members, we each had our own experience and perspective that would shape the solution to this need. With a commitment to making meaningful change, Innerhive was born.
Fast forward to today, over a year later, and our passion for reimagining care has taken flight! The free Innerhive app is available for anyone to use right now, and I am so excited to share it with you all and to hear what you think so we can continue to make it even better. Innerhive was built to support families wherever they are in their wellness journey, which is why we encourage our fellow advocates to share it with anyone they know who comes to mind.
Just as I wholeheartedly believe that Innerhive would help the families I’ve worked with in the past, I know that Innerhive has the potential to empower families nationwide with their very own care maps. From children with complex medical needs, to foster and elder care, Innerhive is here to keep care teams aligned and informed when it matters most. Join us on this journey. Together, we can amplify the voices of families like ours, streamline care coordination, and improve care management for all.
Sincerely,
Åland Rinehart
Check out innerhive.com to learn more and to start care mapping for free today! The mobile and pocket-friendly version of Innerhive will be hitting the App Store soon, so be sure to stay tuned. You can also follow Innerhive on Instagram, Facebook, and LinkedIn, or get in touch with the team at hello@innerhive.com
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