For Cynthia Fusillo, caregiving is more than helping an individual with special needs get through the day. It is about building independence, creating connections, advocating for families and helping people become part of the community.
Finding a calling in special education
Fusillo began her career in banking, but she eventually realized she had not found the right path. After leaving finance, she began working in education in the school district her daughter attends. She was introduced to a community-based instruction (CBI) classroom for teenagers with multiple disabilities and immediately knew she had found something meaningful.
“I immediately fell in love with being in that type of environment,” Fusillo said.
The students learned practical, transferable skills through activities in the community, including shopping at grocery stores, working at Burlington and learning office skills.
“By taking them into the community, we got the chance to teach them transferable real life skills,” she said.
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The experience inspired Fusillo to pursue a master’s degree in special education. While working as a teacher’s assistant, she also began working as a community habilitation worker through a self-direction program.
Helping families find resources
Through that work, Fusillo has been supporting Alex for nearly two years. Her role involves helping him work toward specific goals while encouraging him to become more independent and engaged in the community.
Fusillo has also learned that finding resources can be one of the biggest challenges for families.
“The resources out there are not—there’s resources, but you have to know where to find them,” she said. “There isn’t like a lot of help.”
She became involved with SEPTA, or Special Education Parent Teacher Association, in the Cornwall area to learn more about available resources and share that information with families.
Fusillo also emphasizes the importance of building relationships within the community. One resource she recommends is reaching out to people who are already connected to the special needs community, including Wendy Javier, founder of the Infinite Heart Initiative.
“Wendy Javier has been a phenomenal resource as I gained knowledge of the community and space around me,” Fusillo said. “Community is key, and those connections matter. These can actually ripple out and create even more connections.”
As a caregiver, Fusillo works to keep her “ear to the ground” for opportunities that match Alex’s interests and goals. She may tell his father about a baking class, a farmers market or another community activity where Alex can practice social skills.
Bringing individuals into the community
A typical Wednesday illustrates what that support looks like. After picking Alex up, Fusillo works with him on independent living skills at home, such as feeding and walking his dog. They then visit the farmers market, where Alex interacts with people he has come to know.
“It’s not only introducing him to the community, but introducing the community to him,” Fusillo said.
She believes that kind of interaction is important because people with disabilities should not be separated from their communities. At the farmers market, people have become familiar with Alex, making his presence a natural part of the community.
The day may continue with grocery shopping at Hannaford, where Alex practices selecting items, scanning them and paying with assistance. Fusillo describes the process as “slow progression”—helping him gradually do more independently.
“He requires a lot of assistance, but every time he gets a little bit more independent and he’s able to do a little bit more on his own,” she said.
Patience, connection and teamwork
Patience is another important part of Fusillo’s work. She has learned not to take difficult moments personally, but instead to consider what may be causing a person’s behavior.
“It’s not personal; they are reacting to something,” she said. “You try to interpret more once you kind of get used to them.”
Through her work, Fusillo has also seen how one individual can positively affect a community. After she shared a Facebook post about a visit with Alex, a farmers market organizer told her, “He brings such joy to so many people.”
For parents who feel overwhelmed, Fusillo encourages them to reach out to OPWDD (New York State Office for People With Developmental Disabilities), local SEPTA groups, brokers and other community resources.
“There’s so many resources out there,” she said. “I think the biggest thing is reaching out.”
She also reminds people that caregivers need support, too.
“Caregivers are people too,” she said. “They need love and they need space just as much as anybody else does.”
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