Thirteen-year-old Dylan Vegeais has curly blond hair, blue eyes, and autism. He loves music and makes up his own songs. He can name all 43 types of butterflies at the zoo exhibit and can tell you who made which escalator in the local mall.
He has also been diagnosed with cerebral palsy, hydrocephalus (a buildup of fluid inside the skull), and oral aversion. He’s prone to seizures.
In most Sunday school classrooms, Dylan would have a difficult time.
Victor starts in on “This Little Light of Mine” and pretty soon, Dylan’s holding up his finger-light.
Dylan’s classroom is special. It has the usual table and chairs along with brightly colored toys. But Velcro holds the door shut—one of the kids is a runner, and the Velcro slows him down enough to let a volunteer catch him before he escapes, teacher Shelley Swanson said. The room is meant for STARS—College Church’s name for those with intellectual and developmental disabilities—who don’t fit well into a traditional classroom.
This room is part of a growing trend among churches that minister to those with disabilities, said Mike Dobes, supervisor of church relations at Joni and Friends.
“The amount of churches we are connecting to is growing on an annual basis,” he said. “There is some huge growth happening with networks, because churches get to learn from each other. . . . But if you compare that to how many churches there are, [churches with disability ministries] are still in the vast minority. Estimates are that 80 percent to 85 percent of churches don’t have any level of special needs ministry.”
Those with intellectual or developmental disabilities can be a hidden minority in a congregation. But their need to hear the gospel is the same as anyone else’s.
“We want to maximize their ability to learn about Jesus,” said Dawn Clark, who recently stepped down after 12 years of leading the STARS program. “If it works better in inclusion [classrooms], great. If it works better in a self-contained classroom, great. Socialization is important, and we can do that in different ways. But if we include everyone in the class but aren’t able to teach them all about Jesus, then we’re not doing it right.”
The STARS ministry at College Church—which offers programming from kindergarten to adults—has more than tripled during Clark’s tenure. It started in the late 1960s with one child and one volunteer who saw this child needed a different way to learn about Jesus, Clark said.
“She went to the elders and got a classroom for this one child, so she could learn about Jesus,” Clark said. “The class had 10 students in it by the ‘70s.” Today, the STARS program includes more than 150 families.
College Church’s story sounds a lot like the one told by Cameron Doolittle, executive director of Jill’s House, a disability ministry started by McLean Bible Church in McLean, Virginia. After pastor Lon Solomon and his wife, Brenda, watched their daughter Jill suffer with seizures for the first two years of her life, they came to the end of their rope, Doolittle said.
“Seeing their pastor suffer in front of them ignited the compassion of the congregation,” he said. “Over the years that’s grown into all kinds of different programs at Jill’s House.”
“It starts with one story, just one person the church knows and loves and wants to care for,” Doolittle said.
Disability ministries like the STARS and Jill’s House are uncommonly large—more than most churches need, said Stephanie Hubach, special needs ministry director for the Presbyterian Church in America and author of Same Lake, Different Boat. In fact, for the vast majority of churches, a separate special needs ministry isn’t even necessary.
Those smaller churches often function more like families, and families naturally know what to do, she said. They take communion to the man with Alzheimer’s, or accommodate the two children with Down syndrome in Sunday school, without realizing that those actions constitute a ministry to the disabled.
“A disability ministry isn’t so much programmatic as it is relational,” Hubach said. “It’s hitting the refresh button on the gospel button in church life. It’s all about the gospel, all about simply making it as accessible as possible so that the blind can see it, the deaf can hear it, the people with intellectual disabilities can understand it, and the people with physical disabilities can get into church to hear it.”
When you look at it that way, she said, it’s not so daunting.
A church’s attitude toward those with disabilities starts with its worldview, Hubach said. A modernist view sees disabilities as an abnormal part of life in an otherwise normal world. The postmodern view rejects that approach, and declares that disabilities are a normal part of a normal world.
Neither view is satisfying, she said. “Who wants to be considered an aberration? Or deny the realities of the difficulty of living with a disability?”
Churches need to rise above those cultural perspectives to embrace the biblical view of disabilities, she said. This view includes two parts: the functional aspect refers to someone's level of intellectual or developmental disability, and the social aspect—which is just as powerful—involves how society treats those people.
“Scripture is the only place where you find a perfect connection between the functional and social aspects of disability,” she said. “It’s a normal part of life in an abnormal world.”
That view changes everything, she said. “Then the impairment is a part of living in a broken body in a broken world, but the social dimensions are part of living with broken hearts in a broken world. The Bible is the only place that combines those in a way that makes sense. It also gives you the foundation for a respect-based relationship.”
Central to Church Health
Ministering to the disabled, whether that looks like a separate Sunday school classroom or an extra aide in an existing classroom, is central to the life and health of a church, Hubach said. “If we don’t understand our profound spiritual disability spurred Christ to go to the cross, then we don’t understand the gospel. If we do understand, then we know whatever mild accommodations I need to make to help a child with Down syndrome to go Sunday school are not a big deal.”
Every church should be doing something to minister to children with special needs, said Amy Fenton Lee, author of Leading a Special Needs Ministry, which she calls a sort of “cookbook” for how to include these children and their families. “The statistics are overwhelming at this point. Every church of every size has probably one family that is already coming, or has tried to come, or is going to try to come, that has a child somewhere on the [autism] spectrum.”
(Talk of “being on the spectrum” is one marked difference in the history of disability ministries. Where children in decades past had Down syndrome, children today are much more likely to have autism, Doolittle said.)
There are two different ways to tackle a disabilities ministry: by creating a separate program or by widening existing programs to include those with disabilities, said Katie Garvert, former disability ministries leader at Woodmen Valley Chapel in Colorado Springs.
The first step is to identify those who need extra help, she said. It can be tricky—Hubach asked her pastors to estimate how many people with disabilities were in their congregation, and they underestimated by 50 percent, even though the church had operated a specific disability ministry since the early 1990s, she said.
“Identify patterns of behavior in certain settings, with their teacher, with their friends, with certain parts of the curriculum,” Garvert said. “Take that information to Mom or Dad.”
After asking the parents to weigh in, try something different one Sunday to see if it is effective, she said. The change might be adding an extra aide in the room, asking a teenage volunteer to be a buddy for the person, or letting the child take a break to get a drink of water when things get too stimulating.
It might work. It might not. But “parents know you’re making an effort,” Garvert said. “Even if you’re just collecting data, you’re on the road to figuring it out.”
The work reaps joyful blessings, Lee said. Her advice for getting started: “Take the kids you know, that are identified, and create some awesome experiences. Share those stories and let that be contagious, instead of creating paperwork and policy. That’s necessary and will come along at some point. You want to share the blessings.”
Adding a disabilities advocate as a volunteer or staff position can also be helpful. Not only does this person work to ensure that those with disabilities can be included in programming, but he or she should work on educating the entire congregation, perhaps through articles in the church newsletter or teaching a class, Hubach said.
“Education is an ongoing thing,” she said. “The old Red Cross motto says that knowledge replaces fear.”
Because starting a disabilities ministry can be scary.
Some congregations don’t see the need. Others are worried about medical issues, like what would happen if a child has a seizure, or financial issues, like how to pay for staff or the accommodations.
The challenges can be surmounted, Clark said. “Instead of seeing obstacles, we have to say, ‘Yes, this is true.’ How can we handle that? What can be put in place to minimize our risk? There are things that are risky, but our Lord was risky.”
Another challenge can be attracting or keeping volunteers, because many people think they need a degree to work with anyone who has special needs, said Julie Clemens, who took over the STARS program at College Church this summer.
Volunteers don’t need a special degree, but you do need a lot of them if you’re going to run self-contained programming.
In Dylan’s classroom, which is filled with STARS ages 5 to 13, there is one volunteer for every two children. For classrooms with teen or adult STARS, one volunteer is scheduled for every three or four students.
On a Sunday in August, there happen to be as many volunteers as STARS in a lower-functioning-adult classroom.
One volunteer is Laurie Smith, a nurse and homeschooling mom. She volunteered after a conversation with one of her friends, who works with the STARS. And she brought along her husband, Ian, a high school administrator.
It’s their second day, and they’re bubbling with enthusiasm.
The awkwardness on the first day lasted “maybe the first five seconds,” Ian said. Then the welcome was so warm that it didn’t feel weird anymore.
“There are enough other people here who know what they are doing, who can help you and show you what to do, that it’s really not intimidating at all,” Laurie said.
Volunteering takes “no special skills,” Ian said. For most parents, the work of sitting by someone and helping them to color or sing songs is something they’ve already done with their own children.
“It’s really like being a mom here,” Laurie said.
The STARS keep their volunteers fresh by training them annually, making sure they can get to one of the church’s Sunday services, and giving them holidays and summers off and filling in with short-term volunteers.
“When we do that, we found nearly everyone returns,” Clemens said.
Garvert also recommends constant conversation with staff. “It’s not just a checklist item,” she said. “You’re educating and being a voice within the church.” Talking over and over to program leaders about the struggles they’re having and how they can better include and accommodate those with disabilities is critical, she said.
A volunteer’s—and a congregation’s—relationship with those who are disabled will move between five stages, Vander Plaats said. The first is ignorance, when a volunteer knows nothing about disabilities. That moves to pity, which can be helpful as long as the volunteer doesn’t get stuck there, he said.
“The Bible calls us to have pity on people,” said Vander Plaats, who has a speech disability. “People need to pity me because they have to wait a little longer to understand what I’m saying, and they have to be patient with me to understand my words.”
Pity moves people to ask how they can help. That moves them into the third step of compassion, which blends into the fourth step of friendship. And everything culminates with the final stage, when those in the church see their disabled brothers and sisters as co-laborers for Christ.
The stages operate more like a continuum than a checklist, Vander Plaats said. “I’ve gone through all of these stages. I’ve shared this with many people who have a lot of experience with people who live with disabilities, and they say, ‘Honestly, I go through these stages daily, and I’ve been working in this area for years.’”
It’s good to assess where individuals and churches stand on the stages, Clark said. “It’s a journey. Where do you think your church is on the journey? If it’s just ignorance, maybe you can work on education. Maybe you’re in caregiving and have forgotten that [disabled] people have something to offer.”
Each church has its own calling, Doolittle said. If a church is called to build wells in Malawi, then pointing a family with a child with disabilities to a church down the street with a larger disabilities ministry is a healthy and biblical response, he said.
“But for churches that decide to engage, it’s the source of a lot of blessings,” he said. “God teaches us so much about himself and his patience with us, about what it means to be made in his image. It’s a source of a lot of joy and growth that usually starts with a couple, but then it grows as more people are drawn to it.”
Don't Forget the Families
The STARS program has expanded beyond self-contained Sunday school classrooms to “inclusion buddies” for those who can attend regular classrooms, crafts and activities at Friday Night Fun twice a month, and a choir that meets each Wednesday night.
Getting these programs up and running lets the church reach out to another group—family of the person with a disability. During the two monthly meetings of Friday Night Fun, College Church offers a parent support group or a night off for spouses to reconnect.
Jill’s House moved the same way, beginning with a Sunday school class and expanding to day camps and trips so parents could get a break.
“The real need [for parents] was for overnight respite,” Doolittle said. When Jill’s House began offering kids an overnight stay, they worked with Johns Hopkins to track the effect on the stress levels of parents.
“[Parents of disabled children] live at a stress level about 60 percent higher than the normal population,” Doolittle said. “There is more divorce, less attention paid to siblings, more attempts at suicide. We step in and break that cycle.”
The one night off reduces the parents’ stress levels by 60 percent, he said. “I don’t know how to cure cerebral palsy or autism, but by God’s grace, we can cure the stress gap.”
The trick is getting parents to take the break.
“The parents pour themselves out for these kids, and it’s almost part of their identity to not do anything for themselves,” Doolittle said. In order to minister to parents, you have to start with convincing them that the programs for their children are safe and fun.
“You can’t appeal to them on basis of, ‘This is good for you. You’ll get to go to church,’” he said. “As you go down the path, they come back and say, ‘I didn’t realize how much I needed this.’ But if you try to recruit on that basis, it won’t work. Everything they do is for their kid.”
Dana Rzechula has been pouring herself out for curly haired Dylan since he was born. The journey has been hard and often isolating, she said. Finding community and support at a place like College Church has been invaluable.
“It’s so encouraging to go, to be around others who value your child when everyone else wants to do the least possible or him,” she said. “You come to College Church, and there is the love of Christ.”