How to Use
We hope this website is like having helpful friends or family members who know a lot about different things. For example, if your car breaks down, it’s great to have a brother who is a mechanic. Living with SCI means you need to know about many different things, and no one person can know everything! By talking to many people who have SCI or help someone with SCI, we want to help you find the right information and help at the right time. We hope we can be like a family of experts to help make living with SCI a little easier.
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OUR MISSION
About NorthStar
This website is to help families and the person who got hurt navigate after an SCI. The first few years after an SCI can be really challenging. It’s hard for the person who got hurt and also for the person helping them. They might have to go to several doctors and hospitals to get better. If you’re the support person, you will be helping your loved ones while they work on getting their body strong again and feeling better emotionally. You’ll be looking for things to help your loved ones get better and get back to doing what they used to do. You might be wondering how to help and spend a lot of time on the phone or computer trying to find information. Sometimes, there may be so much information it can feel like too much! Other times, you might still have questions, even ones you don’t even know you have yet. This website is made to help you with those questions. It will guide you through what to ask during different times of the recovery after SCI, and it will also show you where to find the answers.
This website wasn’t just made for people with spinal cord injuries and their support persons. It was actually made by them! Our team spent three years talking to many people with SCI and their support persons. We listened to their questions and what successes and difficulties they had. So, everything you find on this website is exactly what a helper or someone with an SCI said they needed, asked about, or found helpful.
There are already many resources to find help. We don’t want to make new information you can already find. Instead, we want to help you find your way through the information that is already out there. Our research shows that people with SCI and their support persons want one central place that tells them what questions to ask for the next steps in their journey. We won’t share every single website or paper, but we will share a few good ones for many different topics to help you find the right path. We hope this guide will make it easier to understand all the different things that happen after an SCI. It's like looking at all the stars in the sky – they are all there, but this guide will help you see the patterns and know what's what.
"The biggest thing that I would like to see is just the resources. It's very difficult if you don't have a, a team of, of individuals that have been around situations like this. Like, it's easy to say, "Well, you know, you've got the world wide web. Go, go search something." But- You know, just searching something isn't enough sometimes. You know, sometimes if you have the resources to where you're put in the contact with the right situations that can lead you, and the right situations, it would cut out a whole lot of stress and issues that, you know, the individuals that are already dealing with enough, and their families that are trying to go above and beyond to help get them the resources, they wouldn't have to deal with those. You know?"
Background
The idea for this website arose from the intersections of many experiences. While I have worked in the area of SCI since the mid-1990s, it wasn’t until 2015 that I realized two critical problems. First, people with SCI were leaving inpatient rehabilitation much sooner than in the past, and second, as a result, people with SCI and their families were scrambling to make arrangements for living in society with a chronic disability.
I’ll never forget the moment when a gentleman named Steve, who had a newly-acquired high-cervical level spinal cord injury expressed anxiety about his care timeline. All at once he needed to contend with lost employment and income, subsequent changes in insurance and resources, and questions about how these factors would influence his access to rehabilitation and tools for successful community living. People with SCI and their families have so much more to deal with in addition to their lost mobility and other functions.
Around this time, I was working on a doctorate in Sociology, investigating human rights, disabilities, and health care policy. I began to see situations like Steve’s through a different lens. I suspected that many individuals, not just Steve, were struggling with how to navigate the resources necessary for returning to their communities and successfully living with a disability. This led to my doctoral work which investigated the experiences of people during the first year following SCI, as they navigated healthcare and social services institutions for resources to live well in society.
Additional research, supported by the Craig H. Neilsen Foundation, led to in depth analyses of the strains on support persons to people with SCI, who often assumed the behind the scenes work of accessing resources as their loved one worked hard at recovering. It is this project in particular that shapes the content of this site - people with lived SCI and caregiving experience helping others in similar situations.
Meet the Team
Housekeeping
While we will try our best to update links to avoid the dreaded “404 page not found”, the internet is ever-changing! Should you encounter a dead link, please let us know via our contact form located at the bottom of every page and then try googling the title of the non-working link to see if you can access the intended information… In the meantime, we are working on the best practices to ensure that links get updated to maximize your information access!
We thank the Craig H. Neilsen Foundation and the Cleveland FES Center for supporting this work.
