Stefanie Primm (’05, MS’08) and her brother always had a tight-knit relationship. But while she was in college, her brother with autism experienced a crisis leaving him hospitalized. Despite having limited aid from their parents, Primm and her brother found support in a surprising way.
Primm, a former undergraduate and graduate student in the Sandra Rosenbaum School of Social Work, worked as a respite care provider during college. It was the relationships she formed with families she worked with that reciprocated support as her brother experienced a crisis.
“That stuck with me,” Primm says. “Those experiences of feeling like somebody else understood what it’s like to love someone who experiences the world differently.”
Primm used her experience to launch what would become LOV Inc., which stands for Living Our Visions Inclusively. The mission is to ask people with disabilities directly what they need and prioritize getting them those resources instead of offering more generic programs.
“We realized very quickly that we needed to bring families together, and that traced back to my experience of being supported and held up in a crisis by people who didn’t owe that to me,” Primm says. “But because we had this shared understanding of what it was like to raise and love someone, we understood what it meant to share that support.”
In 2008, while working at UW–Madison’s Waisman Center, Primm and another employee received funding from the Dane County Department of Human Services to focus specifically on working with individuals with disabilities and their families. Through that position, Primm and her associates were able to let families guide the intent and impact of their work.
Primm quickly realized that micro-level social work alone would not benefit families long term.
Families with whom Primm consulted often mentioned they felt isolated from their peers. Children with disabilities began to lose connections with friends from school after graduation, while other parents in the community were not transitioning their children into adulthood in the same manner.
“Isolation and loneliness are huge problems for this community, but they’re not problems you can solve one person at a time,” Primm argues.
In 2008, Primm helped to create LOV Dane to foster community and provide support for people experiencing similar situations. LOV Dane became LOV Inc. in 2020, when Primm and other employees began to expand their resources and community-building efforts to families residing outside of Dane County.
For many people with disabilities and their family members, it can be difficult to find natural connections in a community.
“My brother and people with disabilities also get bullied in school,” Primm says. “So, as his sister, when he talked about joining these community groups or meeting people that way, the first thought I always had was, ‘Will they be nice to him? Will they laugh at him?’”
To address this concern, the organization established a position to help individuals with disabilities identify their interests and find spaces where they could engage with peers who share those interests. Dubbed Community Connectors, these positions were paid for directly by the families, which gave employees the chance to experiment and figure out what worked.
This program evolved into the Bridge Builder project. Currently, there are five bridge builders, with two in Milwaukee and three in Dane County.
“We’ve supported hundreds of people over the last 15 years to find people they can make lasting connections with,” Primm says. “It was a group ‘aha’ moment that we had. It was a collective of people who all wanted the best for their loved ones, and so they came up with this idea.”
Beyond Bridge Builder, LOV Inc. also hosts workshops like Fearless Future to help families and people with disabilities transition into adulthood and address future planning.
The workshops collaborate with families to establish financial security and estate planning to ensure people with disabilities have the necessary resources if their primary caregivers — typically parents or siblings — pass away.
As part of the workshops, parents can write down helpful tools only they may know. For example, how does a person celebrate their birthday? What brands of clothing does a person prefer? What are important family traditions?
While the workshops offer families toolkits and other resources to develop their plans outside of LOV Inc.’s spaces, the most helpful part is the ability to communicate with other families experiencing these same thoughts and bounce ideas off each other.
“The unknown and the uncertainty is hard and terrifying, so it leaves you afraid to bring it up or talk about it,” Primm says. “So, whatever we can do to keep that opportunity available to families is critical. It’s critical because it also keeps you doing hard things when you know other people out there are also doing those hard things and care.”
Often people categorize the work Primm is doing and the support she offers her brother as an act of “sainthood” or “heroism,” but Primm has never thought of the love she has for her brother as unique or rare.
“The families that I work with are typical.… People with disabilities have the same aspirations and hopes as their peers do,” Primm says. “They want to have a meaningful way to spend their time. They want relationships that are reciprocal. They want a way to give back to their community and engage with people with and without disabilities. And they want to be happy.”
Over the past few years, LOV Inc. has been expanding its resources, including Bridge Builder, into the Milwaukee area to meet a need for community efforts outside of Dane County.
Primm is unsure of the direction LOV Inc. will take in the future but emphasizes the need to approach growth cautiously. For Primm and LOV Inc., quality community-building takes precedence over continuous growth and expansion.
“I can’t pluck out of the air the next community we will work with or the next need that we might meet, because it’s going to come from a community,” Primm says.