We recently polled 135 parents of children with medical conditions, disabilities, and additional needs to understand the challenges their families face so we could start to develop solutions that could help empower and support.

 

The data we collected from the survey will help us understand on a broader scale where and how families are currently receiving support, where additional resources or supports are required, and how community can come together to fill the gaps that exist.

 

The poll was conducted in April 2019 and responded almost exclusively by families in Alberta.

When our pediatrician first told us that he was concerned with Hayden’s development and he wanted to run tests it was a shock.  When we received that phone call from genetics that there was in fact something wrong, our life shifted.  From that point on our life became all about trying to understand how our daughters life as well as our own will be impacted.  But there was no great place to find this information, and we were not given a clear idea of where to start.  Many families felt the same way when we asked about the beginning of their journey.

Over the years as we learned to navigate the vast web of resources and information out there, we still don’t have a clear idea of the supports that could help.  Four years in we are still finding out about different programs, and learning how they could benefit us.  There is still no good way of putting it all together.   We asked how other parents felt and what it has been like for them.

There has been many times where Hayden has had therapies, doctors appointments, and hospital admissions.  With the frequency of the appointments and therapies, and the unexpected nature of a hospital admission it has been impossible to not take off work to attend.  When Hayden is in the hospital, it becomes even more difficult to even focus on work, knowing your daughter is in a hospital bed having terrible seizures.  I have missed a lot of work over the years.  Some employers understand.  Some employers don’t.  Some care.  Some don’t.  We asked how employment was affected and it was drastic.  Many people lost jobs, became unavailable, and eventually unemployable.  This response alone makes me feel that something more needs to be done to empower families with greater employment options.

We flew across Canada for a vacation back in 2015 with Hayden.  She was a year and a half old.  While we were in Ontario, Hayden had one of her worst seizure episodes.  She ended up aspirating, and required immediate intensive support.  She was rushed in air ambulance to the closest children’s hospital where she spent the next two weeks in the PICU.  We were away from home and terrified, while our daughter fought for her life.  We didn’t know what to do, or where to turn.  We didn’t plan on going to a hospital away from home.  For many families however, traveling away from home to receive the specialized care in a children’s hospital is exactly what is needed.  Being away from home, loved ones, work, and the comforts of familiarity, really makes it difficult.

When we think about families who are dealing with extraordinary medical challenges, our focus is usually on the recovery and well-being of the person hospitalized. However, for thousands of families across Alberta and Canada, there are often many additional challenges outside of what goes on inside the hospital.  These challenges could revolve around paying the bills, finding a place to stay, or finding food to eat.

To help these families overcome some of these challenges, our team is working on a project called the “Sprout Network”. Our mission for the Sprout Network is to ‘connect children and families with the supports they need to thrive’.

Our vision is to create a digital repository that compiles all available social supports onto a single access point; dramatically improving accessibility for families in need.

We see the benefits of this platform for families being threefold. First, it improves search convenience, as there’s much less time and effort required to find the supports they need. Second, it improves support accessibility and accuracy, as data will be up-to-date and well categorized. Finally, by making the process of finding supports accessible and convenient, we can make it easier for families to focus their attention on the health and well-being of their loved ones.

If you’re interested in learning more about the Sprout Network, or wish to help us with this project, please email us at shaun.fehr@tuffsprout.com.

In the meantime, feel free to check out some of the resources we have gathered here