Inside Tompkins County Consumer-Driven Approach to Disability Services

ITHACA, N.Y. — When Jeff Boles sits down with someone who needs help, the first thing he doesn’t do is tell them what they need.

Instead, he listens.

Boles has worked as an advocacy specialist at the Finger Lakes Independence Center (FLIC) in Ithaca for more than 25 years. His cerebral palsy affects his speech, fine motor skills and balance. Beyond one-on-one support, Boles leads Living Well with a Disability programs at FLIC, encouraging individuals with disabilities to embrace healthy, fulfilling lifestyles. He actively participates in the Developmental Disabilities Subcommittee of Tompkins County and works to ensure recreational opportunities throughout the community remain accessible to people with disabilities of all ages. His advocacy also extends to the state level, where he promotes awareness and legislative action on disability issues.

In all of these roles, Boles challenges one of society’s most fundamental misconceptions: that independence means doing everything alone.

At FLIC, the person seeking support sets the agenda. They identify their goals. They decide what success looks like. Boles and his colleagues simply help make it happen.

“You decide what you want, what you need,” Boles said. “It is up to us to help you achieve that goal.”

This approach is a shift from traditional service models that position professionals as experts who determine what’s best for their clients. At FLIC, expertise comes from lived experience, and success if defined by the individual, not the institution.

“It’s not the disability in and of itself that’s the problem,” Boles said. “It’s the way society thinks about people with disabilities. It’s the way that society is designed.”

Founded in May 1988 during the disability rights movement, FLIC began as one of 20 independent living centers across New York State. Today, that network has grown to more than 40 centers.

The organization has evolved significantly since opening its doors at Clinton West Plaza. In 1993, FLIC became a United Way Partner Agency, and they moved to its current location at 215 Fifth Street in 2003.

What began with four core services (information and referral, independent living skills training, peer counseling and advocacy) has expanded to meet community needs. FLIC now offers student transition services, accessibility consultations, American Sign Language classes, medical equipment loans and employment services through the American Dream Employment Network. In 2004, FLIC opened its Try It Room, featuring assistive technology and adaptive equipment for daily living.

The organization also partners with the Tompkins County Office for the Aging to coordinate services through NYConnects, providing information and assistance for older adults, people with disabilities and caregivers seeking support. FLIC serves approximately 2,000 people annually.

Unlike traditional disability service providers, FLIC uses a consumer-driven model, challenging what Boles calls the “miracle model” of disability, an outdated view that disability must be corrected or cured by medical professionals. Instead, the organization operates from a social model framework that identities barriers in society’s design and attitudes as the actual problems to address.

“The miracle model says that disability needs to be corrected. It needs to be cured,” Boles examples. “The social model says disability is part of the human experience. Disability is natural, and disability doesn’t need to be corrected. What needs to be removed are all the barriers that people with disabilities face.”

Jan Lynch came to disability advocacy work through an unexpected path. After earning her master’s in social work, she initially envisioned doing therapy or counseling. But her first internship, working with people with disabilities on employment, changed her direction entirely.

Lynch has served as FLIC’s executive director since April 2014, but her connection to the organization spans more than two decades. She spent nearly ten years as a FLIC board member and president before taking the position as executive director. Beyond FLIC, Lynch serves on several board and committees throughout Tompkins County, giving her a unique understanding of how disability services intersect with broader community systems.

“It’s so life-changing for people in a way that sometimes therapy takes years, if ever, to achieve,” Lynch said. “When you become part of your community in a way that makes you feel productive, it makes you have new friends and co-workers. It’s really transformative for people who haven’t had that opportunity.”

At FLIC, the flexible funding structure, unlike restrictive Medicaid requirements, allows staff to meet people where they are rather than forcing them into predetermined service categories.

“The idea behind independent living is to help people make their own independent choices,” Lynch said. “So, of course, that has to be kind of ingrained in the way the service is delivered.”

Beyond direct services, FLIC works to foster community connections. Lynch acknowledged this reamins challending in a small service area. Support groups often start with enthusiasm but struggle with retention as numbers dwindle. This winter, FLIC plans to try virtual support groups to improve accessibility and reach.

“I think that’s one way people really find connections and feel a sense of community when they can talk to other people experiencing similar things,” Lynch said.

FLIC also connects people through monthly newsletters, Facebook posts about accessible community events like the annual World of Skills Job Fair, now in its 29th year.

But FLIC’s mission extends beyond individual support to much broader systems of disability advocacy. The organization dedicates a part-time position to statewide systems advocacy work, pushing for policy changes that affect people with disabilities across New York.

This dual focus, individual empowerment and systemic change, reflects FLIC’s understanding that true independence requires addressing both personal needs and structural barriers. In Ithaca, those barriers include the physical inaccessibility of many historic buildings on the Commons and throughout the city.

“I think Ithaca has many beautiful older buildings, but that means they’re pretty much inaccessible,” Lynch said. She noted that lack of ADA enforcement has weakened the law’s impact, allowing barriers to remain not from malicious intent but from insufficient awareness and accountability.

Yet the most persistent barrier remains one that cannot be legislated away.

“The biggest barrier I still see today is the attitude and misconceptions people have about people with disabilities,” Boles said. “You cannot legislate attitude[s]. That takes education and awareness.” He emphasized that most policies affecting daily life (employment, healthcare, transportation, housing) were created without input from people with disabilities.

“People with disabilities were not represented at the table, so they got overlooked,” Boles said. Changing this requires persistent advocacy and education, work that Boles has dedicated his whole life pursuing.

Lynch emphasized that advocacy work at FLIC often means teaching people to advocate for themselves.

“What we want to do ultimately is help someone build the skills and the confidence and the knowledge to be able to advocate for themselves,” she said.

Society often defines independence as complete self-sufficiency, viewing any need for support as dependence. FLIC challenges that narrative.

“It’s not that anybody wants anything special,” Lynch said. “It’s that they want equal opportunities to succeed and be happy in their lives.”

“Disability rights have come a long way since the 1960s and 70s,” Boles said. “But we have still got some work to do.”

In the meantime, FLIC continues redefining independence one person, once choice, once act of self-determination at a time.