ROCHESTER — Ana Casserly, the mother of an autistic boy, works tirelessly to advocate for improving bilingual special-education services to meet the needs of Latino children who are disabled or have special-needs.
To assist her in her work, she has gathered more than 70 parents of children with special needs to form Special Parents Special Kids (SPSK). Members of the group convene about once a month to keep tabs on the status of individual members’ educational cases. Casserly also assists families with complicated paperwork or accompanies them to meetings with school officials as part of advocacy work, she said.
"We (parents) really have to unite," group member Myrna González remarked during an SPSK meeting last fall.
"Fifty united voices are louder than 100 disparate ones … We must move forward (and advocate for our children) as a united front," said Gonzáles, who has a daughter with obsessive-compulsive disorder.
Like González, most of the group’s members have children in the Rochester City School District, where challenges include a lack of bilingual special-education teachers and high rates of suspension for children with special needs. Casserly pointed out that suburban parents also struggle to ensure their districts are meeting their children’s unique needs.
González is no stranger to such struggles.
Her daughter, Natalia Vázquez, had displayed learning difficulties during her elementary-school years. Despite the child’s inability to read and write, her mother said district officials kept insisting Natalia had no disabilities. In the fourth grade, her daughter subsequently was diagnosed with obsessive-compulsive disorder, González noted.
Also during her fourth-grade year, Natalia had an outburst in school and was sent to the hospital, but González said she was not immediately notified.
The incident prompted González to keep Natalia out of school for a while, which she said resulted in a visit from Child Protective Services because of truancy concerns. González then enrolled her daughter in Crestwood Children’s Center, a private school in Henrietta for students with special needs. Natalia attended Crestwood for two years, then was homeschooled for one. Now 17, Natalia has attended BOCES for two years and is doing well there, González said.
Natalia, who will graduate this year, hopes to go on to college, her mother said.
González’s story illustrates the need for advocacy and changes in the ways school districts handle special-needs students, Casserly said.
"The only thing we are demanding is our rights," she remarked.
Among the rights sought by SPSK are ensuring that suspension from school is not the response to outbursts from children whose special-education needs are not being addressed, Casserly said. She noted that one student she is working with has been suspended so many times that he has hardly spent any time in school during the 2015-16 school year.
Last spring, a group of 40 families with whom Casserly worked filed formal complaints with the state department of education about the lack of appropriate services or intervention for their children. All of those cases were resolved, according to Christopher Suriano, the executive director of specialized services for the Rochester City School District.
Despite the Rochester district’s attempts to resolve individual cases, challenges for families persist due to a lack of comprehensive, bilingual special-education services, said Bryan Hetherington, an attorney with the Empire Justice Center. Hetherington has been working with a group of 20 families — mainly in the city school district — whose children need such services.
"There are significant systemic violations of federal and state law in terms of the education of kids with disabilities and the subgroup of kids with disabilities who are limited English proficient," he said.
Violations have included failures to provide information on their children’s cases in Spanish, to notify parents of meetings regarding their children and to provide transportation to off-site programs that could help the students, Hetherington explained.
An RCSD subcommittee of a task force working on revising the districts "code of conduct" is exploring concerns about special-needs students, particularly their higher rates of suspension, said Gladys Pedraza-Burgos, chief operating officer for Ibero-American Action League and a member of the task force. She said the task force includes administration staff, parents, local agencies and community members.
But Casserly said the task force has not sought input from parents whose children have been directly affected by the code of conduct, nor have such parents received adequate information about the task force’s work.
"No one asked the people getting the most suspensions — people who speak Spanish and minorities," she said.
In reviewing the school district’s proposed policy revisions, the task force found that better communication with parents is needed, and that clear information about suspensions should be provided in parents’ native languages, Pedraza-Burgos noted. District staff members also need better training in classroom management so they are able use discipline as a teachable moment instead of relying on suspensions to solve classroom problems, she added.
"There’s a lot of excuses for why a kid can be suspended with very little information to the parents on why the kid is suspended," Pedraza-Burgos said. "What the community task force is most interested in looking at is prevention, intervention, and how, when and where the district code applies."
The code of conduct can be a useful tool in determining the root causes of behavior exhibited by children with special needs, Hetherington said. Before disciplining a students, federal law requires a teacher to determine whether the student’s disability is "a material part" of the cause for disruptive behavior, he explained.
Making such a determination requires knowing what sets off a particular student, Hetherington said, noting that the triggers can be identified by giving the student a "functional behavior assessment." The results of such an assessment enables schools to develop an intervention plan. He noted that a number of students in the Empire Justice Center’s investigation had not received such assessments.
"We really want systemic fixes," Hetherington remarked.