I am writing to share my experience with Supported Decision-Making New York (SDMNY) and my journey toward independent decision-making as I beginn to make plans and create pathways. Working with Associate Director Joan Cornachio, I identified support needs across work, relationships, healthcare, and finances, and assembled a team of 15 family members and friends to assist me.
More Than Mentors: The People Who Help Me Live, Learn, and Explore
Today I am talking about the mentors I currently have. Over my 17 years, I have been able to work with so many different people as mentors, or aides, or direct service providers, as they are called! Many become honorary members of my family! I am grateful to each and every one of them for helping me have successful, active and engaged days!
On Tuesdays and Wednesdays, the comedian Harrison helps me out. He helps me a lot. He has been my aide since February—and he helps other people, too. He is a legend and I’m so proud to call him my friend. He showers me, helps me take the bus or drives me, and feeds me through my G-tube.
The second person I work with is Christina. Over night she helps me turn to my side and in the mornings, she helps me get ready for school really early in the morning. She started in late May of last year, so she’s been a part of our home for over a year!
Since last September, so almost a year, Gerard has also been helping me. He works hard—he’s a full-time teacher before he comes to help me! He really helped me with my rehearsals for Footloose. He frequently takes me to Onondaga Lake Park so I can explore as well as the stuff Harrison does. He reads with me and edits my blogs!
All of my mentors, aka aides, help me every day. I feel so honored.
Musicals!!!
I love music! Especially show tunes—those from Ragtime, The Lion King, Wicked and Aladdin, are some of my all-time favorites.
Thanks to my goduncles and uncle and friends who joined me, I’ve seen Ragtime, Wicked, Aladdin, Frozen, School of Rock, Moulin Rouge, A Wonderful World, and the Phantom on Broadway.
I was over the moon when I saw Ragtime at Lincoln Center with Josh Henry as Colehouse Porter. I actually went three times, I loved it so much! “Wheels of a Dream” is my fave song ever. It was my birthday and Christmas present and then I saw it the day before it closed when I went to NYC for a medical appointment!
Music makes me feel like a new person! I want to be a Broadway star when I’m older like Ali Stroker! In September I’ll go to see my friend Tom’s one man show in NYC off-broadway—I can’t wait…but it’s not a musical. I’ll let you know how it was!
Onondaga Lake Park
Onondaga Lake Park is one of my favorite places because it’s easy for me to enjoy nature using my chair! There’s lots of room to roam so I can feel totally free. The paths at the park are paved and smooth which makes them lots of fun. It’s amazing to see many different people enjoying the park on bikes or on foot. It’s great that I can be part of the action!
You do have to be careful to stay on the path especially when it’s wet.
One time I got stuck off the path when it was wet out and got mud all over my tires. It made quite a mess at home!
Another thing that makes this park special is the parking! They have many wheelchair ramp spots for my van which makes getting in and out super easy.Someday I’d like to take the trail all the way from the mall to Liverpool. Next time you come to OLP maybe you’ll see me flying by or chilling in the shade by the lake.
Norway Countryside Adventures
In Norway, I visited my friends’ hytte. A Hytte is a log cabin. It is like a house but it is smaller, and this one was in the mountains in Ustaoset. Our friends invited us to stay with them. The dad, K, built a ramp for me to go into the house. The house wasn’t totally accessible but they did their best to make it accessible, and it worked for the three days I was there! I used the bathroom with dad carrying me because I didn’t have my bathroom chair or lift. I couldn’t take a bath or shower, just a sponge bath. When everyone went swimming in the cold mountain lake, I was bummed because the lake was not accessible.
The countryside was beautiful! But I could only go on a portion of the long hikes because of accessibility. We still managed to take so many photos!
And I was able to have good times and hang out in the cosy cabin with our friends, watch the world cup games, and I drove with Kjetil and their family in their car to sightsee. It was a stick shift. I enjoyed it because I helped him with the gears from the passenger seat! It was a good adventure!
I’d rather have a few hassles and still be able to travel than to just stay home! I learn something new everywhere I go!
Rolling Through Oslo: Accessibility, Adventure, and a Royal Welcome
I returned to Oslo Norway for a week this summer! On the first night I got there, my father, mother and sister and I went to the palace to participate in the celebrations of the World Cup athletes. I was dreading the crowd, but the accessibility was very good! The King’s guards actually escorted us to a section at the front for people with disabilities!
We were very surprised they asked us if we wanted to go to the front because I was in a wheelchair.
We also used the bus and the tram to travel when we were in Oslo. I love the freedom of using public transport! We were able to get through everything but the driver had to help me get on the ramp or mom had to lift the bus ramps—it’s not a power ramp, it requires a person to lift it open, which sort of stinks. It was annoying but it wasn’t that bad. Maybe because of all the snow they get? But we do in Syracuse, too….mom says maybe it’s because there aren’t really tort lawyers in Norway? Regarding buses, then, Norwegian busses are less accessible than New York’s buses because they don’t have as much machinery to lift wheelchairs like in the United States. But the people are very very kind and very helpful and sort of relaxed so that makes accessibility easier, overall people don’t seem as stressed as in the US. And there is a lot more connectivity via bus in Oslo than in comparably sized cities in US.
Fairies, Friends, and Ziplining: My Week at Camp Alec
In this weekly blog post I would like to tell you a little more about my camp trip to Camp Alec; Located in the beautiful mountains of Empire, Colorado. When I arrived I was greeted by the unbelievably talented Gina Cunningham and Wendy Ragatizi and staff dressed in fancy fairy costumes. That was just the start of the six day and five night stay and camp. We had four main activities while we were there, swimming, fishing, movies and music, and ziplining; and of those, ziplining was my favorite. I was gripped with the rush of getting airborne, and when I was sky high I was living! I also enjoyed reuniting with my friends LJ, Charlotte, and Maeve I was excited to meet my counselors Jack and Derek. I met LJ and Charlotte last year during some down time at our cabin. I did literacy ever. Morning and afternoon for a few hours. All in all I had a great week at camp, and look forward to next year!
One of my favorite places to hang out with friends is a food market!
Another one of my favorite places to hang is Salt City Market in downtown Syracuse. I can meet up with friends there to have a quick chat. Even though I don’t eat the food, my friends can enjoy it when they come to hang out. I love to sit in the food court and people watch as everyone goes by. Sometimes I have a hard time getting through all of the chairs. I made it through it if I go another way. I wish I could stay there all day, but I don’t even have time. It’s difficult for me to watch people eat because I only eat through my g tube. I sometimes eat sauce which is very yummy!
Local Bus System, increasing independence
Recently I have been learning the local bus system, in hopes to get around more independently. Last week my mentor and I took the bus from my house to downtown and then on to Onondaga Lake Park!
I wasn’t nervous riding the local bus, because I have ridden other buses in bigger, busier cities. My goal is to ride the bus totally independently paying my own fare and getting on and off without any hassle.
Supported Decision-Making allows individuals with disabilities to maintain control over their lives through legally recognized agreements, providing a vital alternative to guardianship. This process ensures rights are preserved while clarifying exactly how supporters will help.
I also recently recorded a podcast with SDM expert Jonathan Martinis to discuss obstacles to this process. I encourage you to listen to his insightful responses. I am honored to call him a friend and am grateful for his commitment to making supported decision-making a reality for us all.
Redhouse Theatre Company is Accessible to all!
Redhouse is an amazing theatre company that is accessible to everyone! It is a place in Syracuse where I have performed in shows. The stages are wheelchair accessible! They provide mentors for aspiring performers who help us be successful on stage.
My musical interests is show tunes. Some of them are from Ragtime, The Lion king, Wicked and Aladdin, some of my favorite shows I attended are ragtime, wicked, Aladdin, and Phantom! One time I saw a show on Broadway I was over the moon when I saw ragtime! Music makes me feel like a new person who wants to be a broadway star!
I have performed in two shows at Redhouse, Tuck Everlasting (2025) and Pippin (2026); both times in the ensemble. Acting can be a nerve-wracking experience but it feels great when the show is on!
Happy International Day of People with Disabilities 2025!!
This year’s theme is fostering disability inclusive societies for advancing social progress!
This International Day of People with Disabilities, here are 12 days of my reflections on inclusion and how inclusion advances social progress for me.
Day One: I Can Do It All – Including Musicals
Did you know that a person who uses a wheelchair and speaks with augmentative and alternative communication like me can perform in a school musical? In fact I was in my high school musical, Mary Poppins last year! And this year I’m performing in our school’s production of Footloose!
Day Two: Inclusion In Everyday Activities
Including people with disabilities makes us all successful! My church is great at including me and letting me show what I’m capable of! I was nervous at first to read in front of everyone! But I did it! And I love it now!
Day Three: Support in the Community
We all need support in life! How do you support people in your community? Receive support? Any of us can map out our life plans. In fact I did this! With my friends and family, I mapped out my life and advocacy plans for being a part of my community!
Day Four: Going Out to Dinner
Going to dinner with someone who uses a wheelchair? Check the restaurant before going. I raise awareness of the need for accessibility in my community and when I travel.
Day Five: Let’s Talk About Ramps
Not all ramps are safe and accessible for all wheelchairs! The ADA in the US has helped standardize ramps for safety, making public places more accessible. The ramp in this image was pretty steep and scary
Day Six: Beach Time
Also did you know anybody can go to the beach, disability or not? With a little assist from this awesome water wheelchair, I can hang out in the surf with everyone else!
Day Seven: Riding Buses
Did you know the bus is for everyone? Not every kind of transportation is accessible for people with wheelchairs. But when you design with me in mind it can make trips a lot easier like this sweet bus ride in France!
Day Eight: Renting Vans
Did you know that renting an accessible wheelchair van when I travel to a new city is super expensive and difficult? If you rent a normal van it is a lot CHEAPER than what you would pay for a wheelchair van. I want it to be free and easy! I think it’s really really ridiculous to have to pay a lot more money for a rental car because I need accessibility. If I were President of the United States, I would demand that rental wheelchair vans cost a lot less money and that they’re available at the airport!
Day Nine: Jobs
Did you know that teens with disabilities can get jobs if someone awesome gives them a shot? I had my first job in the summer! I had a blast working to help the summer camp function smoothly.
Day Ten: Other’s Achievements
Achievements of people with disabilities. Did you know that Mr Stephan Farffler invented the first self- propelled wheelchair in the 1600’s? He became paraplegic after he fell as a young man. He was a watchmaker and he used his skills to create a wheelchair he could move on his own.
Day Eleven: Climbing Rocks
Did you know that almost anybody can go rock climbing? With a little help from adaptive tools like this harness and a good team, rock climbing can be accessible for a lot more people!
Day Twelve: Cheering on Your Fave Team
Sometimes people forget that part of the fun of sports is cheering on your fave team! My friend Jason Bennetti has CP, too, and he’s a celebrated sports announcer! We were visiting him at work in Chicago in this picture, taken on Mother’s Day!
About Leo
Leo True-Frost is an 11th grade student at JD High School in Jamesville, NY. He was born with cerebral palsy which affects his mobility (uses a wheelchair), speech (communicates with a speech generating device), and digestion (has a g-tube.) Leo’s poetry has been published in Unique Magazine and in Wordgathering and he loves to read and write. Leo enjoys adaptive sports like rock climbing, skiing, and biking. He has traveled a lot, and he is a big fan of Broadway musicals.
Read Leo True-Frost’s review of We Move Together in Wordgathering.