Demi is sitting at a table using her computer while smiling at the camera

Meet Demi – A Personal Story

In 2021, this Pennsylvanian family took a leap of faith and finally made a big decision regarding their daughter. Demi is 28 years old with Down syndrome and currently residing with her parents in their family home. However, she is living quite the independent life. During the winter months, Demi’s mother and father travel out West to soak up the sun while she happily remains here in Pennsylvania all by herself.

This decision was not made over night but started out as a gradual change. Demi’s parents started taking trips for four days at time which eventually turned into weeks and now four month-long trips away from home once they were comfortable enough. This decision to stay in a different state for a whole season was made entirely possible due to easily accessible and affordable assistive technology. Not to mention the unwavering trust they have for their daughter and the amazing support they receive from local family and friends!

Before this all began, these parents knew they had lots to prepare ahead of time to ensure Demi’s safety. In case of any emergencies they have regular conversations with Demi about what to do in certain situations. She knows to call 911 in the event of a fire or any other life-threatening emergency. Demi even had first-hand experience with this when she accidently set off the smoke alarm and called the fire department. While it may have been scary for her at first, this allowed her the opportunity to meet with the local fire department. She received a personal lesson on operating smoke detectors and what not to do with the oven with these firemen, all while her parents remained on the phone. Since then, their family has met with the fire department again and even the local police department to explain Demi’s living situation. Thankfully, these first responders were nothing but helpful and receptive! In any other situations, this family has enough close friends, family, and neighbors that are willing to show up at their doorstep at any time and help Demi if she were to need it.

Their household is also equipped with a few assistive technology items that allow Demi’s parents to offer support and keep an eye out, even from afar. They have a Ring Smart Doorbell Camera that allows both Demi and her parents to know when someone arrives at the door whether it’s Demi’s support team, a friend, or a package delivery. With the camera and microphone attached to this, Demi can greet her parents every time she’s leaving or arriving home. Nest Cameras are also located in rooms throughout the house that her parents can occasionally access to see what she’s up to and monitor if anyone else is with her. This is especially helpful when Demi leaves her phone in another room and sometimes forgets to answer the phone for their daily chats. Their garage door monitor, which was already installed when they bought the house, is another way that lets her parents know when she’s coming and going. They have a Nest Thermostat that can be controlled through each of their phones. While Demi is extremely techno-savvy and has no problem adjusting the temperature on her own, her parents have full access to do so on the few occasions she keeps it too cold. Lastly, Life360 has been extremely helpful in these situations. This app allows them to track her location when she’s not at home right from their phones, Demi also has access to see where they are if she ever needs to get ahold of them.

Thanks to accessible technology, nothing is holding Demi back from living the life she wants. Demi currently has two jobs, at two separate restaurants/cafes. She receives waiver support and transportation that takes her to and from each of her jobs. Demi also has a wonderful support person who spends 6-8 hours with her every week. Sundays are spent grocery shopping together and on Tuesdays and Thursdays, she comes over to hang out with Demi while they plan and cook a few meals for the rest of the week. They sometimes even attend community events together, such as plays or anything else that peaks Demi’s interest. When she’s not at home using her computer or at work, she can be seen on their neighborhoods walking paths getting her daily exercise in. When she feels like treating herself to breakfast, there’s a coffee shop and bakery located right in their development within walking distance. There is even a brewery nearby where Demi spends almost every Saturday night sipping half a beer at the bar and getting her dinner to go!

While this doesn’t seem like a lot, it ultimately makes a huge difference for this family. This assistive technology was all affordable and easy to set up. Installations were done by themselves and none of it required any major renovations to their house. They will forever be concerned about their daughter’s safety, but with each passing day since they started this two years ago, they know it gets easier and that this was definitely the right decision! This family wanted to share their story to let others in similar situations understand that this is possible. Individuals with Down syndrome can live separate lives from their families and gain a new sense of independence almost every day, while still staying connected and ensuring their safety. However, while their story is one of success, it’s still necessary to have outside support. All of their support and resources have allowed them to overcome their fear and give Demi an independent life. They are looking forward to continue living their lives this way for as long as possible. Demi is especially excited, who despite enjoying summer with her parents, is already eager for them to take their next trip out West!