Pictured is the author Lea Whitney with black hair and brown eyes, sunglasses on her head and next to her is her sister Rhiannon also with brown hair and eyes, both are smiling.
I am an older sister to a beautiful young woman named Rhiannon. She is 36 and has Down syndrome. As a family member I often hear the word “maze” in reference to all the new things we need to navigate to support my sister and ourselves as caregivers. Usually, we hear it from a well-meaning service provider, medical professional or another family like ours and in the context of “let us help you navigate the maze of services and resources.”
At times finding what we need can be confusing and complex. It’s no secret, services and resources are difficult to find and even when you do find what you need- it can still be hard to navigate, especially government services.
After thirty years my mom and I understand the system and accept its challenges. But, families shouldnt have to wait thirty years to understand this complex system. There has to be more we can do.
In the United States, there are 307 million internet users (93% of the population) that currently use the internet to find answers to their questions and find information. (1)
We use the internet for everything. I have used it to find vital things such as my mom’s current house, our current house, our family doctor and so much more. But, when it comes to finding resources for Rhiannon it isn’t easy and I often can’t find what I need, why is that? Maybe I am not asking the right question? Honestly, I don’t always know the question I am trying to ask. This seems like an incredibly ineffective use of something that has so much potential.
My sister and I grew up in a very rural town in Indiana. I recall the struggles my mom went through when trying to find resources and services for education, healthcare, and government benefits. My mom said the best thing she did was move to Illinois to be closer to family and better resources. This also helped her obtain a career in special education and build her community of professionals and advocates she needed to navigate “the maze” throughout my sister’s early life.
Today, Rhiannon is an adult and our questions have multiplied. Unfortunately, my mom is retired, our community nearly diminished and we are finding it harder to find resources for adults.
There are 2,272,298 adults in Illinois with a disability (CDC). This is equal to 23% or 1 in 4 adults. (CDC State profile 2021). (2) The number of people with disabilities has increased in recent years thus increasing the need to improve access to information and resources found digitally.
So how do we do that?
I asked my mom what she thinks about this issue. She said one thing we can do is rebuild Rhiannon’s community. But, what does that look like now? And how do we do that in a digital age? Thirty years ago it was our neighbors, friends, clinicians, teachers, care managers and more and we had no internet. Today, with technology you would think it would be easier to rebuild someone’s community, but it is not. Ironically, in my opinion “social” media hasn’t really made us more social, has it?
Despite the social dilemma the digital world is still capable of touching many lives, but it can be complicated to use. Here are a few suggestions on ways to break a few of these barriers and rebuild:
Our location should not define our ability to access vital resources or connect with advocates. If you have valuable information to share with one family, think of the families you aren’t talking to and ways you can. This can be done by creating an information dissemination plan.
Everyday people use Zoom, and although it fails us sometimes it also gives many people in remote locations access to resources, and it’s not the only tool that does this. There are lots of tools to increase engagement digitally, also known as communication channels. When you build your plan, research different channels and think about who your audience is, the best way to reach them, and if you don’t know how to reach them, then ask.
Don’t assume that if you post your resources on a website families will find it. When I think of information dissemination I think about three categories; findability, accessibility and usability. How findable is the information? How accessible is it and how usable is it? Be an information dissemination change champion especially if you produce and post digital content in any way.
Stop adding to “the maze.” Support policies for digital change and always ask families what resources are most important to them, this will ensure it gets to them and is useful. Also be aware of information overload. It is real for all of us, but incredibly more so for families.
Finally, community is what matters most to families. Like my mom said life with Rhiannon is not a maze, but more of a journey. It’s different and new and unlike anything else but it’s also very beautiful and her community is what helps us on that journey.
Next time you talk with a family, ask them about their community and how you can be a part of it and help it grow for the long-term.
References:
“How Many People Use the Internet?” (Jun. 28, 2022). Zippia the Career Expert. Retrieved February 4, 2023 from https://www.zippia.com/answers/how-many-people-use-the-internet/
CDC’s National Center on Birth Defects and Developmental Disabilities – Impacts Illinois (n.d.) 2022 IL Disability and Health State Profile. Retrieved February 4, 2023 from https://www.cdc.gov/ncbddd/disabilityandhealth/impacts/pdfs/Illinois_Disability.pdf
