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Approximately 15% of children ages 3–17 have one or more developmental disabilities. The Caregiver Navigator mobile app will help caregivers of these children navigate complex systems; keep track of medications, appointments, and intervention plans; identify and track services; and find links to important documents, support groups, wellness, and other services.The app is a project by Shai Fuxman, Chelsey Goddard, Sarah Jerome, and Lin Pang of the Education Development Center, and the winner of EDC’s $50,000 pitch competition. The team was inspired to develop Caregiver Navigator based on their own personal experiences: Chelsey’s son, Shai’s daughter, and Sarah’s older brother are all on the autism spectrum and have been diagnosed with other conditions including extreme anxiety, sleeping disorders, and epilepsy.
At EDC, Chelsey is a vice president and director of the organization’s behavioral health portfolio. She is also a former fellow of the Leadership in Education in Neurodevelopmental and Related Disabilities (LEND) program. Sarah is a researcher and trainer focusing on problem gambling prevention, and a current LEND program fellow. She has also worked as a family navigator for families with children with developmental disabilities at the Boston Medical Center. Lin Pang is an instructional designer and e-Learning producer at EDC. Shai is a senior researcher at EDC, focusing on substance abuse prevention. He is also the co-chair of the Massachusetts Department of Elementary and Secondary Education’s Special Education Advisory Council.
Zoe Dobuler: To start off, what are your backgrounds, and how did you find your way to EDC and to the Caregiver Navigator project?
Shai Fuxman: I’ve been at EDC for 20 years. Ever since I was in college I really wanted to go into the field of education, with this belief that education can bring about social change. Our education system reflects our society, so I wanted to go into education as a way to really do good in society. And so I joined EDC, which is an organization that does just that: We do research, we develop programs, trainings, consultations. But basically everything we do in education and public health is about ultimately changing lives — our motto is “learning transforms lives.” Most of my work has focused on substance abuse prevention, and more broadly, behavioral health.
Chelsey Goddard: I have been here one year longer than Shai! And my background is in public health, not in education, and I came here and have worked almost exclusively on substance misuse prevention projects, spanning from community to national level projects. I currently run the division called Health Promotion Practice and Innovation, and that group encompasses much of our work, including substance misuse, but also suicide prevention, violence prevention, and now the Caregiver Navigator work.
Sarah Jerome: I have not been at EDC as long as Chelsey or Shai — I’ve been here for just over three years now. My background is also in public health, and one of my big motivators is social justice when it comes to population health and working with communities who are marginalized and have to deal with inequitable situations. That was one of the things that attracted me about EDC when I first came here, the different opportunities and the fluidity between different projects related to behavioral health and related to the intersection of education and health. Also, looking at people as a whole, and populations as a whole, and finding specific strategies that can be used and implemented to promote equity.
Lin Pang: I’ve worked at EDC for about six years now. My background is in education and technology, so I actually came to Boston because I was attending a Master’s program in technology innovation and education at Harvard Graduate School of Education. Then, I was fortunate to have gotten a job at EDC working on a social learning platform — creating trainings online — and creating courses for training small business owners around the world. After that project, I did a variety of things, mostly using technology in education. I am now in Seattle getting my second Master’s degree in human-centered design engineering to bring in more of a user experience perspective and figuring out how to design better products to really meet the needs of users, help motivate them achieve their goals.
ZD: I know many of you have a direct, personal connection to the work you’re doing on the Caregiver Navigator project. Can you tell me a bit about what motivated you to create it?
CG: I can start briefly and just say that those of us here at this table have very direct family experience that has brought us here. I have family members in my immediate family who are affected by autism and other various issues. But, most specifically, my son who is about to be 18. He was born very clearly with some needs that were out of the ordinary, and it was overwhelming to say the least. Things are better now in that there are more safeguards in terms of laws in place both federally and in Massachusetts than there were when my son was little, so that is a very good thing, but even with those laws, the idea of trying to understand your rights and your child as a multifaceted being can be incredibly confusing.
If they’re lucky, they get into early intervention very young, which is sort of like the education sphere. Then you end up in the medical sphere, too. My husband and I were exhausted, and trying to figure it all out. We turned a lot to social media and to Facebook groups, and in those days, Yahoo bulletin boards, to try to learn from other parents. I’ve been fortunate to have many opportunities that have put me in a situation along the way to share what I know, and share lessons with other families, but I don’t know any parent, no matter how many resources they have, or how strong a social network they have, that doesn’t feel overwhelmed when faced with the needs of a child affected by a developmental disability. That’s really what motivates me.
SF: Similarly to Chelsey, I have two kids, and my daughter, who is nine, is non-verbal, has cognitive delays, autism, epilepsy — generally a very complex profile. And so, like Chelsey and her husband, my wife and I struggled — and still do — with sleepless nights, and dealing with medications for epilepsy, and dealing with the school system and navigating different healthcare experts. And I brought that experience to work with me, and I found Chelsey and Sarah as colleagues who had similar experiences.
SJ: As Chelsey and Shai alluded to, I also have a personal connection with someone with a disability. In my family, my brother — who is is turning 30 — has autism and is non-verbal, and he has other complexities with gastrointestinal issues and problems sleeping. So, growing up I saw how my family had to navigate through different systems, and how a lot of times there were so many gaps, and so many times that the systems did not adequately support my family.
Going back to that social justice angle, it set a fire in me for helping other families not have to go through those same challenges. My parents were born in Haiti, so I’m Haitian, and when my brother was born, my parents had been in this country for well over a decade. My mother is a registered nurse and my father was also in the medical field for a while, but even when it came to communicating about the challenges they saw in my brother, the delays they were seeing, they were pushed aside by providers they were encountering.
I think a big part of it was not knowing what their rights were. Granted, in general I think society has moved a lot over time, especially in disability-related fields, to actually have policies in place for families and people with disabilities. But being able to voice that, having some type of support, whether in terms of resources, connections, information, all of that was something that, in talking with Shai and Chelsey — I think when I first came to EDC we all immediately connected over our personal stories, and having this opportunity where we can dive into something that’s so close and personal, and being able to know we can make a difference for other people, is really great for me.
ZD: You initially came up with the idea for Caregiver Navigator for a pitch competition EDC held last year. Can you talk more about that experience?
SF: EDC had its 60th anniversary last year, and they decided to raise $50,000 to have a pitch competition. Any group of up to four staff at EDC could come together and come up with an idea with the goal of changing the world. Obviously a very broad theme! And it was a great opportunity, kind of like Shark Tank, a very exciting thing. So the three of us connected around this idea of doing something that wasn’t directly related to our work in behavioral health or public health, but that’s directly related to our personal lives.
So, we came up with this idea for an app to help parents navigate through both the healthcare and education systems with your child with special needs. You don’t divide your mind to healthcare vs. education, so the example I give is that my daughter has epilepsy, which is a clearly medical condition that requires medication, and she’s being seen by a neurologist. But her epilepsy doesn’t end when she goes into school. Now it becomes an educational issue too, because her school team is involved as well. So, we don’t think about it as two different systems, we think about it as one whole child.
CG: And then I think a big part of the impetus for that is that then you have Shai and his wife, and his son, who are all impacted by the fact that this member of their family has these needs, and that epilepsy is scary. And so how do we acknowledge and integrate that into this reality of being a caregiver?
SF: Yes, social support, and dealing with family dynamics. As Chelsey said, I also have a son, so how do we parent both children? How do we deal with other family members? All of those ideas came into this idea of a Caregiver Navigator, helping parents map out challenges that they have to deal with, and giving them all the tools that they need to navigate.
And the good news is that, out of the 30 teams competing, we actually won! So now we have $50,000. The good news is that we won, but the bad news is that we won, so now we have to do the work! But we’re well into the process now.
ZD: Congratulations! It’s interesting — you mentioned wanting to work on a project that addressed something in your personal lives, but it seems like you all bring something unique to the project professionally as well.
SF: Chelsey has a background in public health, my background academically is education, Sarah has professionally done family navigation at the Boston Medical Center. Lin obviously brings her tech experience. So we all have this professional expertise around education and health and family navigation and instructional design. So, we do have these personal experiences that motivate us, but we also bring in all of our professional expertise as well.
CG: And to add to that, over the years parenting my son and working with the school district to try to get him and other kids — advocating for things that they need, I have realized how instrumental my professional skills are for that. And so that was something we I think all started to talk about, and feel like, there really is something we can do here.
ZD: Hearing your personal stories and learning more about the issues the app helps people navigate, I’m curious to get sense of what using the app is actually like. How does it bring all these ideas together?
SF: So we call our app Caregiver Navigator, since it is a navigation app so to speak. The analogy I like to use is to the Waze app: Waze doesn’t control your drive; it doesn’t control how many car accidents there are, or the volume of cars on the road, or the weather. But rather, what it does is help you to have the most optimal journey through all these different challenges that exist. It alerts you to what’s ahead of you in a crowdsourced way that allows others to build the journey together. So with our app, it’s a similar idea that the app won’t change your child’s diagnoses or the education or healthcare systems. That’s a much bigger issue. But rather, it’s about helping you navigate through the system so that you can have the best journey— so you avoid the “traffic,” or pitfalls, that others have had before you.
And similarly, another analogy to Waze is that Waze always has you, the driver, at the center of the map. They don’t give you a huge map and have you figure out where you are; they tell you this is where you are. And so some ideas for Caregiver Navigator, we’re going to help you figure out what you need to do right now based on where you are right now. It’s a user-centered app. And this is where Lin brings her expertise to help us figure out what is the user needs now, and how do they find themselves in this jungle of education, and healthcare, and social, and other kinds of dynamics going on around them.
CG: We’re in the midst of designing and developing this right now, so we have a series of wireframes and we’re in the process of doing focus groups with parents. And we also have an advisory group that has been informing our process as well, including professionals and caregivers from around the area in various roles and representing different perspectives. So the app is not built yet. Our goal is to have a beta version of the app by end of the summer, early fall. And that is what we’re going to be using to try to get additional funding to expand it.
SF: We can also talk a little bit about the ideas we’ve developed so far. The ideas are basically to help the user have the tools they need. For instance, there are a lot of documents. In the education world, there’s your child’s individual education plan — the IEP —and every year you get a new one. There are medical records. We always joke that as parents of children with special needs, we always have to have a huge bag full of documents, and you’re always trying to find them and organize them. So, one feature is helping you organize those documents.
Another one is around relationships — you have different doctors, and people at school, so how do you organize your contacts? Prescription medications are often a big part of this experience, so how do you keep track of the doses? Also, just information about what to expect. So, for example, I mentioned the IEP process. There’s a whole process that goes along with that. Part of it is also guided by state and federal law, so that sets a whole timeline of events. Going into an IEP meeting where you have 7–10 other people in the school system — psychologists and speech therapists and special ed teachers — can be overwhelming. So, we can tell you what to expect in an IEP meeting: Here’s what you need to know, here’s how to prepare, here are questions you should be ready to ask. Similar in healthcare. When you go and meet with a doctor, here are things you should ask about, here are things to know.
CG: In some ways, what I always wanted as a parent was a case manager for my life. I wanted someone who would help me navigate. Sarah was a family navigator within a hospital healthcare setting, and there are people who are supposed to play that role within the education setting. But there’s nobody playing that role for you as an individual family. And those pieces are so siloed that there is often no connection; it’s not very clear to parents what their rights are, so if I’ve got these medical issues, do I even have a right to ask for certain accommodations? If my child has to sleep during the day for whatever reason, what is my right as a parent to ask the school system, and how do I connect those two systems?
So, there is this idea of having it be a case manager so you can say, “What now?” And at the same time, your other child has decided that they can’t stand their sibling with special needs, so you have all this strife at home, and how do you get your other child the support they need? It becomes this combustible period at times. So is there a place you can go to for help? And so often other parents are your guide, and that’s wonderful. But, if you’re in a place where you’re isolated, or you don’t have internet access all the time, any reason you might not have help. That was part of the motivation — it’s like the little genie sitting on your shoulder that can help you.
This Change Maker interview was originally published April 2019 on the HubWeek blog.
The HubWeek Change Maker series showcases the most innovative minds in art, science, and technology making an impact in Boston and around the world. Know a change maker you think should be interviewed for this series? Nominate them here.