The coronavirus threatens those who need care the most and strains networks providing help
On a Wednesday last month Helen and Don Fitz, a tiny, quiet couple in their 70s, entered Calvary Church's adult daycare center, a room with pastel-checkered carpet and bright blue walls. Tucked underneath Helen's wrinkled arm was a thick, gray folder. She sat down and spread the contents on the table. Her voice cracked: "She only missed one time and that was because we came on a different day and she wasn't prepared."
The "she" who doesn't miss is Elsbeth, a developmentally disabled adult helped by the Faith in Action (FIA) program in Grand Rapids, Mich. Elsbeth, perhaps 70 herself, soon joined the Fitzes at their table and delivered that week's drawing: flowers more like stick figures than Monet's lilies. It was signed: "To Helen, Love Elsbeth." Elsbeth said she likes to draw flowers and also to dance: She rose and performed a trot-skip hybrid with arms rigidly locked, a bit like C-3PO. Helen grinned: "We get a different kind of joy out of all of them. We don't worry as much about little things."
Guardian Angels Homes started the FIA program four years ago with a grant from the Robert Wood Johnson Foundation. Nationally, FIA programs mobilize volunteers of all faiths to care for those with chronic health conditions and disabilities. Services range from shopping assistance to friendly phone calls. But Guardian's Faith in Action director Don Downer explained that, of 1,000 FIA programs in the country, only two work with people with developmental disabilities. His program attempts to integrate people with developmental disabilities into the community by pairing them with volunteers. Currently, 40 volunteers are paired with about 15 disabled individuals.
The Fitzes began volunteering after they saw a Guardian Angel Home going up in their neighborhood. Out of curiosity, they contacted the home and Downer paired them each with a mentee: Elsbeth (who is cognitively disabled) with Helen, and Bobby (who has Down syndrome) with Don.
For the last three and a half years, Don and Helen have spent every Wednesday morning with Elsbeth and Bobby. They usually pick them up from Calvary Church's day camp and get coffee and tea at the Red Hot Inn. From there, they head to the library or go to the park. It's a good match, a testament to Downer's companionship-focused process. Downer, 6-foot-1 with a well-groomed mustache, requires volunteers to fill out probing questionnaires and go through extensive training that teaches them how to identify and respond to different developmental disabilities, how to set guidelines and boundaries, and most importantly, how to slow down.
As Downer explained his pairing system while walking outside two of Guardian's three-bedroom suburban homes, a woman holding a Pizza Hut cup approached from the sidewalk. It was Heather, one of the home's residents, a short woman with an impaired gait and choppy speech. Downer talked with her about lunch and whatever else she felt was important. As she waddled off, he squinted after her: "Sometimes we have to slow down and learn to enjoy a [soda] pop."
Guardian's program accepts volunteers and clients of all religions and denominations. It is ecumenical and, while focused on faith, cautious. Organizers largely ignore doctrinal issues except to pair residents with volunteers of similar faith. "Our folks are extremely vulnerable and easily persuaded," explained Downer. Because many lack the ability to make sensitive decisions, FIA supports religion without forcing it on them. Downer's concern is that overbearing religious pressure could force the residents into whimsical decisions: They "don't need to be converted from one lifestyle to another. We're not going to artificially create something."
While some are skeptical, many of the community's churches support FIA's actions. Congregations from St. Paul's Catholic Parish to the nondenominational Calvary Church help those with special needs while also involving lay people in a variety of ways. For example, Calvary's day camp is staffed by Guardian workers with help from Sally Gallagher, a Calvary member whose step-daughter has Down syndrome. With the energy of a caffeinated 3-year-old, Gallagher organizes dances that campers can perform in front of the group.
At one recent day camp, the audience of campers waited in a multi-purpose room on brown plastic chairs: Some tapped their toes, others whispered, and others stared impatiently at the doorway. Soon campers wearing white or black shirts with black pants and purple sash-like belts filed into the room, waving flags to the song "Glory! Glory! Hallelujah!" Some performers never missed a move while others struggled to stay in line. But when the final chord played from the small CD player in the window sill, none of that mattered. The audience applauded wildly.
Fred Earhardt, the FIA committee chairman and self-described "nosey neighbor," lives next door to the men's home. He often stops by to joke and chat with the residents. He's also a member of nearby St. Paul's Catholic Parish. "Hey Pat!" Earhardt yelled as he entered the home, his voice rattling the cupboards. "Whadya think about Michigan State?" Pat, an avid University of Michigan fan with cerebral palsy, painstakingly pinched his nose and waved his other hand. "Phew!" he said. They both laughed.
Residents who are helped also help others. They greet visitors to various churches, fill bags for the local food pantry, sing for the elderly, make crafts at the senior center, and serve at soup kitchens. They also perform regular chores around the homes, from setting the table to folding socks. Said Guardian Board President Matt Wieringa: "We're empowering residents to do what they can do within their ability level." When residents aren't challenged to contribute, "they regress."
Guardian is even challenging residents to purchase their own homes. The organization has broken ground on a condominium project, intending to sell the units to developmentally disabled people in Grand Rapids. Condo residents would become part owners along with one to three roommates. The point is to teach responsibility, Guardian director Cyndy Longchamps said, and integrate able residents with "normal" community members. As this program and others continue, GAH leaders hope that stereotypes and fears associated with the developmentally disabled will recede. "It's harder to get people to volunteer with people with developmental disabilities than it is with, say, the elderly," Downer explained.
While different, "these are people who have great wealth within themselves, and they are a wealth to our community," said 97-year-old philanthropist and men's home namesake Ralph Hauenstein. A witty and direct man, he served as chief of military intelligence under Dwight Eisenhower and has a developmentally disabled son. FIA treats residents like individuals, he said, not like burdens.
Residents have caught on. One Hauenstein resident, Paul, has become the defender and caretaker of Fitz's mentee, Bobby, who is very shy. "Bobby," Paul said on a recent afternoon, "why don't you sing 'Jesus Loves Me'?" Bobby perked up and Paul led him to the piano, where Bobby gently placed his frail hand on top of the yellowish keys and played what sometimes resembled chords. Past his broken and missing teeth came whispers of words and a melody.
When Bobby finished, Paul, who had mouthed every word too, clapped and cheered softly, "Good Job, Bobby! Good Job!" Bobby stared at the keys and whispered, "Jesthus lufsme."