She sought support from her local chapter of The Arc of the United States, an organization that advocates for the rights of children and adults with intellectual and developmental disabilities. Despite her initial fear, she prevailed. "Jenna was the first disabled child to be mainstreamed into our school district," Johnson says.
That was more than 20 years ago. Today, Jenna Johnson, 26, lives, assisted, in an apartment attached to her parents’ home, sings with the church choir, and works part time at Target. And Cindy Johnson has remained active in The Arc, today serving as a national leader.
"I found my voice and have continued to fight for the rights of those with disabilities," Johnson says.
Johnson began volunteering in 1985 and was elected to the board of directors of the local chapter in 1989. She served at the state level for 10 years before being named to the national board of directors. She’s now in her second term on the national board and public policy cochair; her work impacts 15 million people nationwide.
From the beginning, Johnson’s interest was in advocacy. She sought training through The Arc’s Partners in Policymaking, a program that taught her how to testify in front of government bodies and communicate with policy makers. Eventually, she was selected to chair the state governmental affairs committee. It was 2003, and the state of Minnesota had proposed severe funding cutbacks for people who received assistance in their home. About 57,000 Minnesota residents would have been affected. For Johnson, whose sister had been institutionalized, the proposed cuts had to be stopped.
"Jenna and other adults living with their families would have had to move into a group home. I couldn’t let that happen," she says. Through The Arc of Minnesota, she filed a class-action lawsuit to stop the cuts. Eventually, some $50 million in funding was reinstated, allowing parents to provide individualized, in-home care for their adult children.
Winning the lawsuit was a defining moment for Johnson. "This wasn’t just about Jenna; it was about giving others the voice that I finally found for myself," she says.
No one knows that better than Jean Bender, current president of The Arc of Minnesota, who has a 22-year-old son with disabilities. "She helped me realize that I could design an individualized program for David—that we had choices. It can be very isolating raising a child with disabilities and she’s brought us all together," says Bender.
Locally, Johnson continues to bring people together. Recognizing the difficult task disabled children face transitioning into adulthood, she started Our Choice, a group that offers parents and their adult children a gathering place. "Parents were asking, ‘Once my child graduates from high school, what’s next?’" she says. "The kids can socialize, participate in crafts and activities, and share a meal, and the parents can talk about the challenges and offer each other support and solutions."
Now, the local chapter of The Arc is picking up on Johnson’s idea. The chapter recently secured a $3 million grant from the Walmart Foundation to help people transition from school to adult life, putting Johnson once again on the leading edge of helping those with disabilities.
Johnson’s real estate career, which started in 2004, dovetails nicely with her volunteer work; she focuses much of her business on helping families find accessible homes. And she’s grateful to work for a broker, Dona Christensen, who supports her volunteer work. "She has multiple sclerosis, and she totally values the work I do, both as a real estate professional and as an advocate for the disabled," Johnson says.
Still, Johnson’s first and most important career will always be as a mom. "When my daughter looks at me and tells me I’m the best mom in the whole world, it’s a wonderful feeling," she says. "Knowing that without my hard work she and others like her might not be living the quality life they deserve makes me certain I made the right choices."