Finding independence with the right supports

My name is Lindsay Kondis, and I was diagnosed with a rare disease called Prader-Willi Syndrome (PWS) at eight years old. Because proper diet and exercise are vital for people with PWS, I moved to a community home when I was 24 years old. Now at 44, I can see how that move helped me build the foundation for the fulfilling life I live today.

While I have had to face many challenges throughout my life, the right supports have given me the structure I need to stay healthy, while also allowing me to grow. New technology-enabled supports have been especially wonderful in supporting my lifelong goal of living independently.

Remote supports were recently set up at my home to assist with my health and safety. Sensors help track activity in my home so staff know I am safe, and a touch screen reassures me that I can get a hold of someone when I need to. These tools provide security when I need it, while allowing me to enjoy private time in my own space.

I can live my life on my own terms, with the same freedom and rights as everyone else, because of technology-enabled supports. I can set up my own appointments, and in the future, I will be able to self-medicate. I am also able to plan my own schedule.

I like to be engaged with my community by going to the movies, getting coffee, or simply spending time with people I care about. I enjoy hanging out with my boyfriend and going to monthly dances where I can socialize with friends. I also stay connected with my family and visit them often, as they have always been supportive.

A few years ago, I began advocating for myself to find meaningful employment and was eventually offered the opportunity to become the first Peer Advocate at Mainstay2. I now work in the office two days a week to assist with new employee orientation, paperwork, and projects like a monthly activity calendar and newsletter.  I was also asked to represent Mainstay at the annual Disability & Mental Health Summit3 in Western Pennsylvania, where I had the chance to meet Governor Josh Shapiro.

To help others advocate for themselves, I joined many committees like Voices of Mainstay. What started as a small advocates advisory board has grown to over 15 members — and we are still growing. We now have our own Board of Directors, and I was nominated by my peers as the President.

Together, with other committee members and mentors, we organize activities such as visits to a bowling alley and Trax Farms, games in the park, and a karaoke party. I am proud to say, that as a group, we also went to the Pennsylvania State Capitol in Harrisburg to meet with representatives for our voices to be heard.

My future goal, with the help of Mainstay, is to continue to use technology-enabled supports to increase my independence. Because of these new tools, I am getting to a place where I need less day-to-day assistance and can be more self-sufficient.

To live independently has been a long dream of mine, so I can only begin to express what this means to me. One day, I would love to live in my own apartment, get married, and have a family of my own — while still serving as an advocate of course.