KANSAS CITY, Missouri — After students at the public school started bullying the Winbinger twins, who have cerebral palsy, the girls’ parents knew it was time to pull them out.
For Matt and Becky Winbinger, the obvious alternative was to look to the Catholic school system.
“In a Catholic school it’s true inclusion. Everybody is treated the same way,” Becky Winbinger said. “It’s not like that at a public school.”
But this type of inclusion — the integration of students with special needs into the regular classroom — is new to many Catholic schools.
In Kansas City, where the Winbingers live, the practice of inclusion has flourished in Catholic schools. But in much of the rest of the country, simply including children with disabilities in Catholic schools can be a long and difficult road for parents.
According to the National Catholic Educational Association, the number of students with disabilities in Catholic schools across the country has increased by almost 20,000 over the past three years. (The association began tracking the number of students with disabilities in 2015.)
But because disability practices aren’t uniform across Catholic schools, families wanting a Catholic education for their disabled children often encounter tough choices.
When Vincenza Spadafore was born with a rare genetic condition known as PURA syndrome, her parents, Christy and Dominic, faced a dilemma. The Catholic school their boys attended in Tulsa, Okla., was built in 1928, with lots of stairs and no elevator. The Spadafores knew it wouldn’t be suitable for their daughter.
It wasn’t that the school didn’t want to help Vincenza, Christy Spadafore said, but there was no cost-effective way to do it.
That’s when they found the FIRE Foundation.
FIRE, which stands for Foundation for Inclusive Religious Education, was started in 1996 in Kansas City, Mo., after a group of parents were “heartbroken” they weren’t able to give their children with disabilities a Catholic education. They’ve since provided more than $4.8 million for inclusive Catholic education, investing $400,000 this past year, buying iPads, providing training and hiring special education teachers.
The Spadafores began talking to the nonprofit in fall 2017. Soon they had a list of possible places to move.
“We looked at these places in perspective of what happens to our 21-year-old daughter or when she’s 30, or when she’s of an age where we cannot physically take care of her?” Dominic Spadafore said. “What are the options for her?”
Plus, the Spadafores had their two boys and their own careers to worry about.
Ultimately, Kansas City had the support Vincenza, who is 5 now, needed for schooling, plus some of her specialists were already located there. It also allowed all three children to attend the same Catholic school.
“In a lot of ways, getting her ready for school has been some of the easier part of this relocation,” he added.
But even for those already in Kansas City, it doesn’t come without cost.
One of the biggest problems with serving students with disabilities in Catholic school is the lack of resources. The most common option is to partner with the child’s public school to receive certain therapy services.
For the Winbinger twins, Katie and Lauren, Nativity of Mary Catholic School wasn’t able to provide any of the therapies needed. So, the Winbingers decided to do without physical and occupational therapy.
For a while, Becky Winbinger drove the twins to speech therapy and then back to their Catholic school, where they would have to make up the lessons they missed.
Ultimately, they dropped speech therapy, too.
It’s decisions like this that FIRE is working to end.
The nonprofit is working on starting pilot programs to address therapy needs within the Catholic school.
“It’s all about bringing the resources into the learning environment that are going to help that kiddo succeed,” said Lynn Hire, executive director of the FIRE Foundation.
Hire said she gets phone calls every week from parents all over the United States not sure how to get their Catholic school to accept their child with disabilities.
Once school administrators are presented with the facts about how important inclusion can be, most are willing to accommodate children with disabilities, she said.
FIRE has set up peer-to-peer programs so principals or teachers can talk to experts working with FIRE.
“Inclusion changes the heart of the school,” Hire said. “People are kinder. People are more patient. People are less judgmental. It’s kind of a powerful thing.”
FIRE now works with affiliates in northeast Iowa, central Illinois and New Hampshire. Another group, in St. Louis, recently modeled its program after FIRE’s.
For some, it’s the long and tiresome road of not being able to get their children with disabilities a Catholic education that drives them to push for inclusion years later.
Francesca Pellegrino founded the Catholic Coalition for Special Education in the Washington, D.C., area after she wasn’t able to get her son, now 26, a Catholic education.
“He was being served in the public schools,” she said. “But in the public school you can’t talk about Easter, you can’t talk about Christmas. It really didn’t feel complete.”
She had already started her parish’s disability ministry after she found many other parents had the same questions she did.
She found a few schools that were willing to take in students with disabilities but they were often small programs that weren’t able to accommodate students outside their parish. It always seemed to come down to money and resources.
CCSE has since awarded schools about 60 grants totaling nearly $1 million. It has worked with nearly 30 schools in Maryland, helping about 6,000 students, teachers and families.
Its professional development program, called Believe in Me, is the most recent addition to its support services. The organization is using it as a way for more Catholic schools to get informed and start thinking about best ways to serve students with disabilities and to continue informing schools that have received CCSE grants in the past. On Monday (Aug. 27), more than 70 teachers and administrators attended.
“In many cases, the technical assistance CCSE provides is a precursor to a CCSE grant,” said Pellegrino, in a press release.
Although CCSE mostly provides services in the Baltimore and Washington, D.C., region, the organization receives numerous phone calls from all over the country. In December 2017, CCSE published “Including Students with Developmental Disabilities in Catholic Schools – Guiding Principles for Administrators and Teachers,” to help address questions for anyone, not just those in its service area. The publication goes over topics such as the importance of maintaining high expectations and making use of evidence-based practices.
Pellegrino dreams of the day inclusion in Catholic schools is available everywhere and students with disabilities can go on to Catholic colleges, too.
She knows the dream might feel distant, but she’s always been a fighter.
Her son now works in a supermarket three days a week and is a teaching assistant at St. Peter School on Capitol Hill.
“Even though he didn’t get to go to Catholic school as a student, he still managed to get into Catholic school in his own way,” Pellegrino said.
Tom Racunas, lead consultant for Special Needs Ministry at the Archdiocese of Kansas City in Kansas, believes the push for inclusion in Catholic schools and in public schools is forcing the Catholic Church as a whole to be more inclusive.
Typically, he said, a position like his only exists in larger archdioceses.
“There has been an unfortunate history of people with disabilities being left outside the doors,” Racunas said.
In 1978, U.S. bishops wrote a pastoral statement about the inclusion of people with disabilities.
But a recent study found that a child with autism was twice as likely as one with no chronic health conditions to stay home from church.
“Pope Francis is saying, ‘Reach out into the peripheries,’” Racunas said. “Well, sometimes we don’t have to look any further than our own parish.”
The Diocese of Kansas City-St. Joseph’s Nativity of Mary in Independence, Mo., welcomed the Winbinger twins but there too they were bullied. This time the school addressed the problem and within a month the girls had their first-ever sleepover.
And the girls, now 11, have succeeded in more ways than Becky Winbinger could have imagined.
“These were girls that weren’t even supposed to walk,” she said.
Last year, Katie ran her first track meet.