By: Anne Kaiser

Life’s greatest challenges so often bring opportunities for expansion, growth, and the strengthening of community. For families with loved ones facing challenges such as an
intellectual or developmental disability (IDD), navigating the existing care system can be both daunting and rewarding.

INDIVIDUALS WITH IDD and their families often face some of their greatest obstacles in care and community-building as well as accessing resources after the age of 21, when they have aged out of the supportive environment of the elementary and secondary educational system. Parents and caregivers are faced with pressing concerns about how their adult loved ones with special needs will live successful, fulfilling lives in the community, particularly once parents or caregivers are no longer able to provide essential care and support. Existing opportunities for enrichment and independent community living are scarce for individuals with IDD.

Thankfully, the vision of a group of parents and community leaders has spurred the planning and development of a new, multifaceted living community, Journey21, designed for adults facing lifelong challenges with intellectual or developmental delays/disabilities.

The idea for Journey21 first arose as two Wisconsin mothers, Sheila Frisinger and Susan Marriott, conversed in the bleachers while watching their sons participate in a Special Olympics track meet. Both mothers’ sons face health challenges that impact their ability to live independently; both mothers envisioned creating a safe and enriching living environment for their growing children that would support them throughout their adult lives.

Susan Marriott, mother of two adult sons with Fragile X Syndrome and Co-Founder and Executive Vice President and Secretary of Journey21 explained: “The biggest challenge we all face daily is finding an environment where our children are safe, valued, and [provided] … the opportunities to continue to grow, increase their self-independence, and be happy. As we age, we and many of the other families with whom we spoke are haunted by the question, ‘What will happen with our sons and daughters when we are no longer here?’”

Jim and Susan Marriott had begun to discuss their sons’ future, including safe and supportive living options, when their boys were in grade school. “Marvin and Max’s grandmother battled Alzheimer’s disease, and we often spent time with her and her friends at her assisted living community,” Susan Mariott said. “We began to see parallels with the assisted living model’s mission to provide a safe, supportive, and social environment [that allowed] seniors to live as independently as possible. That planted the seed, and we began to think about a community versus a single living solution for our boys,” Marriott explained.

Marriott was energized after meeting Frisinger; their shared vision prompted the start of extensive research to learn about existing residential communities for adults with IDD elsewhere in the United States. “After mountains of research, meetings with adults and families living with IDD, caregivers and educators in the IDD community, and building key relationships with experts in best practices for residential options, the work soon began to develop a business plan to build Journey21. We haven’t looked back since,” Marriott said.

The Journey21 community will fill a gap, providing an important resource for adults facing IDD and related challenges. According to the Journey21 website, approximately 17,000 individuals with IDD still reside in their family home “because of the lack of safe and supportive residential options.”

Heidi Hamilton, Program and Enrichment Center Director, Journey21, Inc., emphasized
the need for increased supportive services for adults with developmental disabilities
or intellectual disabilities. “Individuals with intellectual or developmental disabilities (IDD)
are an underserved population with few options available for employment, education, socialization, and residential opportunities,” Hamilton explained. “There is a tremendous need for more programs, services, and organizations to help address the needs of adults with IDD so they can live … healthy, happy, and fulfilled [lives].”

Mike Brauer, Executive Director, Journey21, Inc., explained the extensive planning, including cross-country travel to learn more about different models for adults with IDD or developmental disabilities, that preceded development of Journey21. “What we found,”
Brauer said, “was that there were many kinds of communities reflecting the visions of many people seeking to create options.

Giving parents and guardians choices is paramount, and we are building Journey21 to be one of those choices. At this point in our short history, we recommit ourselves daily to getting this first part right—according to our current mission and vision. Might there be additional communities or alternatives for families? Only time will tell, for the need for options for families is extraordinary. We are humbled and grateful that we are in a position to meet some of the needs of some of the people with IDD.”

The five “guiding principles” on which the Journey21 community will be founded include community, safety, independence, wellness, and enrichments. According to Brauer, these principles “were discerned by our founders through their discussions with one another and conversations with fellow parents of young adults with disabilities. As they reflected on their hopes and dreams for these young people, they found that these five principles embodied their deepest ambitions.”

Journey21’s team has been actively working toward creating the community that will embody the principles and goals of its founders. The Journey21 community will be located on a 12-acre piece of land in Pabst Farms in Oconomowoc, Wisconsin, on the southeast corner of Old School House Road and Hackney Way. This location was carefully selected for its proximity to community resources like the YMCA; a vibrant downtown community; nearby parks, paths, and trails; easy access to both Milwaukee and Madison; and the presence of abundant healthcare, services, dining and retail opportunities within a close range. Local businesses and government have already shown support for the Journey21 project.

Lucine Spheeris, Journey21 Director and co-owner of Coldwell Banker Elite in Oconomowoc, Wisconsin, became involved with Journey21 following a “chance meeting” with Journey21 Co-Founder and President Sheila Frisinger. Frisinger had been searching for a location for the proposed residential community; Spheeris and her husband Jon Spheeris, co-owner of Coldwell Banker Elite in Oconomowoc, felt that the parcel at Pabst Farms offered “’walkability’ to jobs and shopping for our community.” Spheeris was drawn to join Journey21 because of their stated goal. “I was impressed that the founders took it upon themselves to develop a plan not only for living but creating a community where individuals with IDD can live their best lives,” Spheeris commented.

Journey21’s living community will consist of market-rate one- and two-bedroom condominiums available for sale to house adults ages 21 and older with IDD who are not considered medically fragile and who are able to live without skilled nursing assistance. These adults will also need to be able to communicate their needs to those around them.

Journey21 was partly inspired by the concept that “community creates opportunities,” and that “every adult deserves to be treated with dignity and given the opportunity to live their best life,” according to Marriott. She noted that a living community like Journey21 also offers parents and guardians “tremendous peace of mind.”

The planning team of Journey21 estimates that the community will cost approximately $28 million to complete; money will be raised through grants, unrestricted donations from the public, in-kind contributions from partners, and funds from the sales of condominiums. Brauer noted that “fundraising is an ongoing endeavor,” and stated that efforts over the past few years have raised $10 million. This money has been instrumental in funding the purchase and initial development of the land, building the Enrichment Center, and supporting initial general operational expenses. “The next phase of building Journey21 includes designing and developing the common spaces, inside and outside, of the residential community. We are
presently beginning a feasibility study which is testing a fundraising goal of $8-$12 million,”
Brauer explained. Journey21’s leaders hope to open the entire residential community in the next three to five years.

Currently, Journey21’s infrastructure of roads, walking paths, and a storm sewer have been constructed. The community’s Enrichment Center opened in April 2023. Brauer noted that current efforts involve continuing to ensure that “the Enrichment Center is operationally solid” while simultaneously working toward completion of the Pabst Farms living community, to be called “The Journey at Pabst Farms.” This process involves “gathering input from architects, developers, financial experts, and real estate professionals, as well as our Board,” Brauer said.

According to Hamilton, the Journey21 team has already forged “50 partnerships with local
schools, universities, non-profit organizations, and businesses who have completely embraced Journey21.” These partnerships, such as one with Life Navigators, provide valuable chances for parents to “unite and support one another,” Hamilton said. Events for parents and caregivers held at Journey21 include “Coffee and Conversations,” held this fall, where parents can learn about and discuss available resources, and “Partner and Family Resource Night,” which helps families learn about accessing post–high school resources. Hamilton summarized, “Families need to be able to support one another, and we want to provide these opportunities so that parents know that they are not alone.”

Susan Marriott has felt the multiple positive benefits of connections made with other families, both personally and through her work guiding Journey21. She feels both “encouraged and grateful” as she observes “first-hand the growth and joy in my own sons and other adults” who participate in Journey21’s programming. “Watching friendships grow, personalities bloom, and the smiles on their faces and the faces of their family members encourages me every day,” Marriott said.

Through the gifts it will provide in resources and enrichment to its target community, Journey21’s positive impact will be extensive and widely felt, heralding a bright and abiding future for this organization and its associated residential living community. Marriott expressed her gratitude to the Journey21 team for their perseverance and diligence in bringing the group’s mission to fruition: “None of this would be possible without all the support and skills of our board members, leadership team, staff, families, volunteers, community and partners. For this I am extremely grateful.”

Brauer concluded, “As I reflect personally on the mission of Journey21 and how what we
are offering is so important and so needed, I keep coming back to human dignity. Each person, whether able-bodied or disabled, deserves opportunities to grow, to find joy and fulfillment, and to be able to experience the joy of living independently in a community. This belief will guide how we will continue to create and offer programs and will ultimately define our uniqueness.”