From the Editor

Collaboration may happen on a personal level or at an organizational level. For example, if you are advocating for your child or family member with a disability, you may collaborate with the school staff or provider staff members. Among other initiatives, as an agency, Starbridge collaborates with other organizations to enhance programs and workshops.


In this issue, we feature three partnerships with Starbridge: the Parent Leadership Training Institute (PLTI); Al Sigl Community of Agencies, of which Starbridge is a member, and Rochester Institute of Technology (RIT); and WXXI, Al Sigl Community of Agencies, and the Golisano Foundation. Read on to learn more abut these dynamic collaborations.

 

Wishing you a Happy New Year!


Best to you and yours,


Maria Schaertel

Starbridge and PLTI Collaboration: Spark Change and Interview with Luva Alvarez

Interview with Luva Alvarez, Greater Rochester PLTI Interim Director


Looking back at Spark Change, what do you see as the most valuable part of this event?


The opportunity to collaborate with Starbridge and the opportunity to inform and educate parents in our community about special education and ways that they can get support for their child. I also saw that this was an opportunity for parents from all over to congregate together, network, and hear different stories that could benefit them.

 

How did parents benefit from Spark Change?


Especially during the open discussion portion of the event, what you saw was different parent leaders and the heads of different organizations were able to share and either give information about upcoming events from their organizations or give ways that parents could be united more together for the journey that they’re in and ensuring their child gets the best of what parents are looking for, in terms of the educational system.


Why are collaborations like this important?


One of things that was awesome working with Starbridge and the staff is that PLTI and Starbridge missions really align together. PLTI is about educating, informing and giving parents confidence that they can have a seat at the table too; Starbridge is in the same boat. I think that it’s really important that organizations in our space, in this community, really begin to come together as one group.


Collaboration allows us to learn from each other, learn more about the other organization. I was really enlightened to find out more about Starbridge. I enjoyed working with Starbridge staff and it was great to see their drive and their passion. I think it’s important that the community sees that organizations like us are working together, It’s really about helping families and not about taking credit for the work being done.

It was definitely a win-win. Now, I feel very comfortable sending an email to Starbridge staff about a parent, for example, that needs help and that I might not be able to provide the resources for, but Starbridge can. Our connection feels so authentic. It doesn’t feel forced at all. The collaboration allowed our relationship to grow, and there’s a trust that was built and now we can help each other out to help families that we are servicing.


Do you have any additional comments?


I was grateful for the opportunity to work with the Starbridge team. I was super excited that they reached out to us and through the connection of another parent leader who had been working with them and had some interaction with them early on, our relationship took off. I’m definitely looking forward to other opportunities and other events where we can work together more, to educate our parents, give them the tools that they need in their toolbox, build them up so they can have the confidence to speak at those school meetings, and be a champion for their child. At the end of the day, that’s what all parents want. We tell our parents that it’s OK to ask for help and then to accept the help. As we share our stories more, parents realize that they’re not the only parent facing a challenge.


I appreciated that at Spark Change, we had a 6:00pm roundtable, and the discussion extended to 8:30pm that night! That was the most impactful moment that they ever had – parents sharing their stories and getting advice on ways to help their children. That was powerful. 


What I really love about the Starbridge collaboration is that since that day in November, it was not a “one and done” event. We still consistently partner together, and I see that as a successful collaboration.


Al Sigl Community of Agencies and RIT Collaboration

For over 10 years, Al Sigl Community of Agencies and RIT have worked together to help connect RIT students and faculty with individuals of all ages who take part in Al Sigl Member Agency programs as well as providers and community volunteers.

Individuals suggest specific access projects, often related to barriers to inclusion that they have faced in their daily lives. RIT students have also taken part in Co-Op experiences observing program activities across Al Sigl’s six campuses that have sparked additional project ideas.


Once a project idea is suggested, there are several opportunities each year for further development. These include individual engineering capstone projects, the Studio 930 summer intensive, or IdeaLab, a bi-annual weekend event that focuses on innovation and creative problem-solving. While projects are in the development phase, individuals taking part in Al Sigl Member Agency programs, as well as providers, play an important role in testing prototypes and providing feedback.


This partnership has sparked hundreds of project ideas and prototypes over the years. One early project is already a commercial success. The idea for ThermApparel cooling vests came from a peer-led support group for individuals living with MS. One of the first Co-Op students, visiting the meeting, listened as an individual shared how they felt isolated during the summer months, when heat can exacerbate symptoms. Since existing cooling vests felt too bulky and conspicuous to wear to most activities, the individual chose to stay home instead. Over several years, students built multiple prototypes and worked to find a solution. In 2018, several students launched a company that specializes in vests that are not only slimmer than those previously on the market, but also featured new materials that stayed cooler longer. They now have customers in all 50 states and in 13 countries.



-by Peggy Fortune, Marketing Director, Al Sigl Community of Agencies

Photo by Gabrielle Plucknette DeVito

Interview with Al Sigl and RIT Collaborators

Who was the driving force behind the collaboration between Al Sigl Community of Agencies and RIT when it was initiated some ten years ago? What vision did they have for this partnership?


Says Tom O’Connor, President, “Al Sigl Community of Agencies’ innovative model is built on collaboration; which I would define as different parties each invested in achieving the same goal. Dr. Barry Culhane and Dan Meyers understood how critical this work could be, having a world-class technical institute coupled with our human service agencies, all working together to foster ideation and understanding.”


What has the response been like for individuals with disabilities, to working with the students? Do they enjoy getting to know the students and providing feedback for the projects?


Frank is a retired father and grandfather who has volunteered to work with project teams since the beginning of the partnership. As a child, Frank received his first wheelchair from our collaborative’s namesake, journalist and radio broadcaster Al Sigl. “It’s his commitment to others that I hope to honor as a volunteer,” He says. “Al Sigl, the individual, would be proud of how these students are working to create change for people with disabilities,” Frank says. “The innovation, ideas developed right here in our community—to think of where we started, it is truly amazing. But there is still much more that needs to be done.”


A provider that works with young adults on one of Al Sigl’s six campuses adds:


“I must admit that during the testing phase, my students were in awe! They were fascinated by the kitchen tools that were designed, almost specifically, to meet their needs. Cooking, as you can imagine, is a very preferred activity for the majority of our students, however there are many barriers that often prevent them from navigating a kitchen or becoming proficient in using the tools and utensils involved due to dexterity, motor issues, and accessibility in general. I am so appreciative to give these students this opportunity.”


What is the student response to working with individuals with disabilities? Besides problem solving and creating solutions, what have they learned about people with disabilities?


Crystal, one of Al Sigl’s early co-op students as part of this partnership, shared that by the end of her first co-op experience with a biomedical engineering lab, “she was talking to the petri dishes by the end of the week and that her experience helping to develop access technologies made her realize that she wanted to use her education to help make a direct difference in people’s lives.” Mariana, who started with the partnership as a student, has now graduated and now serves as a Visiting Lecturer for RIT’s School of Design. She says “It is amazing to have the opportunity to design so close to our end users.” Associate Professor Stan Rickel added, “As soon as the students meet the users, it’s no longer a school project, it’s real life. It brings a whole new level of empathy and the students are proud of the work they are doing.”


Yueyue “Zoey” Zhang worked on several LiveAbility Lab projects designed specifically for Early Intervention programs said, “It’s been amazing to spend time with the children and observe how they play with toys they already have and how they interact with their physical therapists. I take that information back to the lab and think about the toy we’re creating—the shape, the form, and how all of that impacts the interaction, their learning, and their development.”


Besides the ThermApparel cooling vests, are there any other products created by this partnership that are available for purchase?


Not yet, but there are a few others that are very close.

 

Anyone interested in suggesting project ideas or learning more can contact Peggy Fortune at [email protected] or (585) 442-4102 x8779

Interview with Sarah Abbamonte, Project Manager, Move to Include at WXXI Public Media

What has the public response been to WXXI’s programming, resulting from these collaborations?



The response to our recent Move to IncludeTM programming and events has been quite enthusiastic. Individual audience members have expressed their interest in continuing the conversation on ableism which we began at our December event with Starbridge. Most importantly, they have said that they felt seen and represented. That, to me, is the gold star. Representation, as was discussed by the panel, is one of the driving principles behind Move to IncludeTM. Through our partnerships, we are able to broaden our reach and increase impact, introducing our initiative to new audiences, and opening up new channels to serve the community.


What is the most surprising discovery made about people with disabilities in the course of these collaborations?


Up to 1 in 4 adults in the U.S. has at least one type of disability. Even if someone is not directly impacted by disability, they will likely know someone who is. Our initiative aims to provide a platform for the disability community on which to tell their stories, their lived experiences, so that those who have not considered disability, or considered it in a narrower way, gain a broader perspective. We take many things for granted in our lives that have come out of accommodation requests made by the disability community. There are some obvious examples, like the availability of closed captioning, which so many people are now using regularly. One of my favorite examples is the hand signals an umpire makes in baseball, which were first developed by deaf players and eventually made their way into more universal use. Disability touches all of us, in some way, every day.


What is the most interesting discovery made in the course of developing these community partnerships?


Our collaborations and partnerships provide us with the opportunity to go deeper on issues important to the disability community, whether that is housing, employment, etc. We are not the subject matter experts in these areas, so it is very important that we use the platforms and tools we have to highlight those people and organizations who are. I hope to never have an event that is solely hosted by Move to IncludeTM. To me, that’s only getting half the job done. As program manager, I am always seeking out new collaborators or connections and asking myself, who’s not at the table or even in the room? Whose perspective is not being represented? How does something, like COVID-19, the debt ceiling, minimum wage, etc. impact the disability community? Those are the stories and angles that we need to be sharing.


What can you tell us about any new collaborations coming up in 2024?


Our first event of 2024 is a collaboration with The Little Theatre’s One Take documentary series, in the lead up to our annual ‘Dialogue on Disability’ week with the Al Sigl Community of Agencies. We will be screening a film which follows three Special Olympics athletes as they prepare for the World Games. After the screening, we’ll be joined by the filmmaker and local representatives of Special Olympics New York for a panel discussion. You can find more information on our ‘Dialogue on Disability’ page at www.wxxi.org/dod. We’re also working on some additional collaborative events for later in the year, so stay tuned! 


Photo by Natalie Sinisgalli



Additional Resources


RIT students use innovative design through Studio930 to enhance lives


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