Kerry Kafafian recently bought the land where she’ll build Many Hands Lifesharing Community. | J. Adrian Wylie
Something was off about Kevin.
He was affectionate and cheerful like most toddlers, his mother Kerry Kafafian recalls, but “he was doing a movement which we later understood to be a seizure.” A pediatric neurologist determined that he had Lennox–Gastaut syndrome, a rare form of epilepsy that causes severe cognitive impairment.
“By the time he was eight years old, I knew that Kevin would need round-the-clock care for the rest of his life,” she says. And then a gut-wrenching question occurred to her: “Who will care for him when I no longer can?”
Kevin is one of approximately 55,000 Michiganders with severe intellectual and developmental disabilities (I/DD), 8,000 of whom require 24/7 care. But who provides that care is a question without an easy answer.
In 1978, advocacy groups filed a landmark lawsuit against the Plymouth Center for Human Development and the Michigan Department of Mental Health. The case produced extensive evidence of abuse and neglect in residential institutions for disabled people. The U.S. District Court ultimately ordered Michigan to move all persons with I/DD out of state institutions and into community homes—a process that took decades to fully complete. (The last institution didn’t close until 2014.)
“Deinstitutionalization was a good idea and the right thing to do, but in some cases it may not have been realistic,” says Dick Carlisle, cofounder of Intentional Communities of Washtenaw County, a nonprofit supporting community living and social opportunities for people with disabilities, like his daughter Megan.
Each disabled person has a treatment plan known as an Individual Plan of Care that determines which direct services Medicaid must pay for. Community Mental Health coordinates Medicaid services for the I/DD population, but, says Carlisle, the system is “burdened to the limit.” Medicaid pays direct care workers about $16 an hour, making it tough to recruit staff when they can make more in retail. “It’s a very difficult job because our residents are very needy,” says Deana Fisher, COO of St. Louis Center, a residential care facility in Chelsea. “It’s hard to find people whose hearts are in the right place.”
Private facilities like St. Louis Center have waiting lists and limited openings for families without financial resources, leaving many parents as the primary caregivers. Families know there will come a time when they can no longer provide or coordinate that care. “And there’s literally no place to go,” Carlisle laments.
“All solutions are created by parents, as far as I can see,” says Patty Rabe, cofounder of Maple Oaks, a neuro-inclusive community in Saline. “I still worry about what will happen when I’m not here.”
Kafafian needed to find a long-term solution for Kevin. She found inspiration in Camphill, a network of more than 100 “life-sharing” communities located in twenty countries worldwide that provide supportive homes and continuous care services for people with I/DD. She adapted that model for Many Hands Lifesharing Community.
Many Hands offers a fresh approach to the home-care dilemma by providing professional caregivers with room and board, medical benefits, and a living stipend in a communal living environment with the disabled adults under their care.
Kafafian acknowledges that the lifesharing model is not for everyone. She hopes to recruit students who need an affordable place to live while completing work experience requirements in allied fields like social work, kinesiology, and occupational therapy, as well as recent graduates in those fields. Employment with Many Hands counts toward the ten years of social services or health care work required for federal student loan forgiveness.
With the help of a local family foundation, the nonprofit bought a ninety-four-acre parcel in Dexter from philanthropist and real estate mogul David Lutton, and recently secured a $2 million private donation to begin construction. When complete, Many Hands will house thirty-two severely disabled adults and sixty-four caregivers in eight family-style residences located beside a working farm and nature preserve. The campus will be open to the public, with paved trails connecting to the Dexter Crossing neighborhood and a café where visitors can mingle with the residents.
Many Hands is conceived for severely disabled adults over the age of twenty-five, when state-funded school programs end and isolation tends to set in. “This is really for people who want a lot of social interaction, who want to be active,” Kafafian explains, “be it through farming or animal care, the bakery, or doing things at the café so that they feel like they are a member of society and are contributing.”
Standing at the main entrance atop a gently sloping hill overlooking hayfields and forest, Kafafian points out where she’ll put the barn and petting zoo where residents can play with goats and take alpacas for a walk. We hop into her car and drive the two-mile “Path of Joy” that loops around the campus. A flock of sheep belonging to a neighbor look up as we roll by a field planned for solar panels. The community will generate all of its energy from solar and geothermal sources. “We don’t expect to have any utility bills,” she says.
Lutton owns 100 acres of high-quality oak forest and wetlands along the property’s eastern edge, and hopes to partner with Scio Township to turn it into a nature preserve. Beside the forest, eight homes will form a ring around a central garden, each housing four residents, six care providers, and a “house parent” who will manage the residence. An additional forty-eight providers will live off-site.
Social Security and Medicaid will cover most of the operating costs through the Michigan Habilitation Supports Waiver, a fund reserved for people with I/DD who would otherwise need to live in an Intermediate Care Facility—a smaller, Medicaid-certified residential setting offering 24/7 specialized care. Many Hands will also pursue public funding for workforce housing. Private philanthropy will pay for the rest. The community will take several years and about $30 million to fully realize.
St. Louis Center CEO Fr. Satheesh Caniton Alphonse followed his calling to serve people with disabilities. “And then the joy was so profound,” he says. “This is what God wants me to do.” | J. Adrian Wylie
The solutions look different, but communities for people with I/DD are united by the goal set forth by the 1978 case: to break down the walls that separate differently abled people from the wider world.
Cathy, a longtime resident of Chelsea’s St. Louis Center (SLC), enjoys art and reading, but lights up when asked about the Special Olympics. “Oh that’s my favorite! That’s very important. Very important. I got first place in bocce ball. That makes me feel good!”
At SLC, there are trails, ponds, and indoor and outdoor gathering spaces. Residents take part in athletics and creative activities—Cathy created a wind chime imprinted with the “I love you” sign in ASL that hangs from a tree in the garden. Most residents have their own rooms. “I have my own bathroom,” says Cathy. “I like it.”
Related: A Home for All Ages
Founded in 1960 by the Servants of Charity—a Catholic congregation of priests devoted to pastoral care—SLC began as a residential school for boys with I/DD. Today, it provides a continuum of care to fifty-four adult residents on a 180-acre wooded campus, fostering a faith-based, intentional community emphasizing the bonds of friendship and mutual support.
Its CEO, Fr. Satheesh Caniton Alphonse, followed his calling to serve people with disabilities from his native India to the SLC in 2006. “And then the joy was so profound,” he says. “This is what God wants me to do.”
He encourages staff to surround residents with love and patience, “so that all our residents will have the fullness of life.” Though turnover remains a stubborn problem that prevents the center from serving a larger number of residents, “I would say those who are here, they have embraced our mission.”
Most SLC residents are higher functioning; some even hold off-campus jobs. Residents take part in volunteer activities like Meals on Wheels and go on excursions into the community multiple times per week, and many go home to their families every other weekend.
Haylie Gottschalk is the day program coordinator and teaches art and life skills such as money management. She has worked with differently abled people her whole career. “We have their safety and their dignity to protect,” she says, “but we want to make sure that they’re living the fullest life they can.”
For Maple Oaks cofounder Patty Rabe and her son Bill, homeownership is key: “Nobody can come in and just say he’s going to have to move.” | J. Adrian Wylie
Maple Oaks in Saline features an eight-unit condominium block with shared space for semi-independent adults with disabilities. Patty Rabe’s family and four others partnered with developer Three Oaks to build the condos, as well as a one-street neighborhood of single-family homes and townhouses intentionally designed for neurotypical people who are happy to have neighbors with I/DD.
For Rabe and her son Bill, homeownership is key: “Nobody can come in and just say he’s going to have to move.”
Maple Oaks does not have dedicated staff, so families are responsible for coordinating direct care services paid for by Medicaid. Looking back, Rabe is candid about trade-offs: because early buyers were simply the families able to commit, “we didn’t really have the luxury of matching up the participants so that they create a great cohesive social group.” Still, she hopes to develop “a more overarching way to organize the community,” and she’s proud that Maple Oaks has inspired newer neuro-inclusive neighborhoods in Michigan.
Program manager Kara Shuell with Andrew Blixt at one of ICW’s events, which aim to reduce isolation for people with I/DD. | Courtesy of Kara Shuell
Intentional Communities of Washtenaw County (ICW) director Kara Shuell shows me around the activity space of the organization’s headquarters—a large, sunlit room on Jackson Plaza right by the bus stop. There’s a projection screen on the wall for movie nights and colorful yoga mats stacked in the corner like rolls of Lifesaver candies.
Shuell is a retired teacher and loves coming up with fun things to do with the members, paid for bymonthly dues and grants from local foundations. Recent activities include a trip to the Creature Conservancy and a visit from a Chelsea Ballet dance instructor. When a member was hesitant to join in, Shuell recalls saying “‘Okay, what about if they do the YMCA?’ and the dance teacher said, ‘Oh, I have that song!’ And the whole room broke into, ‘Y-M-C-A!’”
The Ann Arbor–based nonprofit was formed by parents of adult children with I/DD to reduce isolation. Most of their members live in groups of condos or rented apartments in Ann Arbor and Scio Township, with a neurotypical “Community Builder” living in a nearby apartment provided by ICW. The Community Builder organizes activities for their neighbors with I/DD, and enjoys chatting and helping out. “It could be as simple as changing a light bulb or putting a battery in a smoke detector,” says cofounder Carlisle.
Shuell’s role has a more serious side, acting as an information clearinghouse for families looking for support services. “It’s easier to get a meeting with me than with Community Mental Health,” she says. ICW is in the process of hiring a Family Support Coordinator who will ensure that each member has a long-term plan of care. “For some families,” Shuell admits, “those are going to be very tough conversations.”
Related: Coming Home
Combined, the living and social gathering opportunities mentioned here reach fewer than 100 people with I/DD, and most were founded by parents. The vast majority live with their families or in group homes paid for by Social Security and Medicaid. Most suffer from isolation.
The biggest problem faced by these communities is finding direct care providers—a situation that could get worse if the Trump Administration delivers promised cuts to Medicaid. But SLC is working to address staff shortages that will allow it to accept more residents. And while ICW has seen its membership decrease over the years due to a shortage of direct care providers, for people with I/DD who can live semi-independently, the Community Builder role offers a lifeline. Meanwhile, Many Hands Lifesharing Community points a way forward that could be replicated by visionary families and philanthropists willing to put in the work.
Kafafian is hopeful. “There’s a photo on our website and it shows a four-year-old boy, a young woman who is legally blind, and a senior planting potatoes together. That was this spring, and we created a community right here without a single building yet. So just imagine what we can do once we have everything going.”
Related: Target: Medicaid
This article has been edited since it was published in the 2025 Community Guide. In the original version, we mistakenly identified Patty Rabe’s son as Matt. His name is Bill.