Family Fights For Down Syndrome Inclusion
TOMBALL, Texas — On the surface, the Pichardo family is fighting for an extra 60 minutes.
But for their youngest daughter Miranda, it’s less about an hour and more about how she’ll be taught and what her horizons will be.
In the context of recent reports about how the Texas Education Agency has sought to keep students out of special education across the state, Miranda’s parents believe Tomball ISD outside Houston is hampering her learning and, ultimately, her future by scheduling the majority of her day in her school’s special education classroom.
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Miranda’s beaming brown eyes and gleeful smile make it hard not to grin back at her. She loves the color blue, and Disney’s “Frozen” is her favorite of all the princess movies.
She also has Down syndrome.
From 3 months to 3 years old, her parents, Jaime and Karina, enrolled her in early intervention services — a program of physical, occupational and speech therapy provided under the Individuals with Disabilities Education Act, which mandates an individualized education program for all children with disabilities in “the least restrictive setting.”
By 18 months old, Miranda was attending a private preschool. Her parents then enrolled her in Tomball ISD’s special education program, despite initially facing what they felt was resistance from the district. While the Pichardos wanted Miranda in special education part time, the district wanted her there full time.
The district eventually agreed after the family filed a complaint to the TEA.
That scuffle would be the first in a series of disputes between the Pichardos and Tomball ISD over the best method to educate Miranda.
Their battle, according to dozens of disability rights attorneys and parents of children with intellectual disabilities, is emblematic of the difficulties faced by many families with children who have Down syndrome, who envision a culture of higher standards and greater public understanding of the condition.
Staci Stanfield, a spokesperson for Tomball ISD, declined specific comment on Miranda’s education plan, beyond saying the district “believes in educating students with disabilities in the least restrictive environment.”
“Each student has access to an appropriate learning environment and an opportunity for education with non-disabled peers to the maximum extent appropriate at his or her campus,” she said.
On one recent Sunday afternoon, the Pichardos’ quaint, two-story home in The Woodlands was more frenzied than usual.
A two-man television news crew interviewed Karina and the family’s attorneys in the living room as they prepared for their most recent hearing to determine whether the district violated federal law in giving Miranda an extra hour in the special education classroom instead of the “regular” classroom.
Miranda was sitting on the sofa next to another guest, Megan Bomgaars, part of the cast of the A&E documentary series, “Born This Way.”
Bomgaars was on her high school cheerleading squad before she went to college. She runs an accessory and apparel business. She also has Down syndrome.
For the Pichardos, Bomgaars represents special education done right, where students with disabilities are actively made to feel a part of the school community.
“Life is not self-contained; it’s a lived experience. Sometimes it’s going to be hard, sometimes it’s not going to be comfortable, but you can’t shield them from that. It’s the experience of being in school, and (Miranda) needs to experience that,” Karina said.
When Miranda was in preschool in the 2014-2015 school year, the district proposed an academic schedule in which she would spend more time in the special education classroom than in regular classes for the following year when she was to begin kindergarten.
The Pichardos filed a complaint, although a hearing officer eventually sided in favor of the school district.
“The standard response from Tomball ISD to anything we ask, whether we’re entitled to it or not, is ‘No.’ You have to push,” said Jaime Pichardo, who works in industrial automation. “Otherwise they won’t talk to you about it; they won’t offer it. This has been the dynamic for the last three years almost.”
During kindergarten in 2015-2016, at Miranda’s annual review in December 2015, the district proposed further reducing Miranda’s time in the regular classroom by removing her from 30 minutes of both social studies and science per day in first grade — before she could even be reviewed based on her full kindergarten year.
This loss of 60 minutes in regular class time was adopted despite reports of progress from Tomball ISD. The schedule would have allowed Miranda to be included with her peers in the regular classroom for just over two hours each day.
“It’s just outdated stereotypes about how people with disabilities should be educated,” said Dustin Rynders, an attorney with Disability Rights Texas. “(Tomball ISD) has a pattern of lowering expectations on someone who has Down syndrome and assuming they need to spend most of their day in life skills class, but that’s just not supported by research.”
In May 2016, toward the end of kindergarten, the family had an independent evaluation performed for Miranda’s speech. The evaluation emphasized speech therapy and recommended that Miranda be an active participant in her regular classes.
The evaluation also found that Miranda’s communication device — a clunky purple and white contraption that helps Miranda articulate basic words when she’s struggling — was cumbersome and distracting.
Miranda must carry the device, which is about a third of her height, around her neck throughout the school day.
Despite Miranda’s proficiency with an iPad, the district neither allows Miranda to use her iPad from home nor has it purchased one for her to use as federal law authorizes, her parents said.
After the Pichardos’ latest hearing concluded last week, another hearing officer will determine by Dec. 2 whether the district violated federal law in prescribing Miranda the extra hour in the special education classroom during the current school year.
Among other things, the Pichardos argued that Tomball ISD should include Miranda in the regular first-grade classroom at Creekside Forest Elementary for all of her core academic subjects. They also want to replace the communication device with a less-stigmatizing iPad.
Tomball ISD argues that Miranda must first master the clunkier device in order to use an iPad in class.
“It’s like she needs to learn to make fire before using a stove, that’s how crazy it’s been,” Karina Pichardo said.
A new generation
Backed by what they believe is ample research and expert opinion showing that inclusion in regular classes is the best way to teach children with Down syndrome, the Pichardos believe the district should be moving aggressively in that direction.
The lives of the 250,000 Americans with Down syndrome are very different from a generation ago. They live more than twice as long on average, while some like Bomgaars are in college. They get married and about a fifth of adults with Down syndrome have a job.
They’ve also become actors, artists and even politicians.
“It should be the starting point,” Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, said of the general education classroom, as early as possible.
But for many parents across the Houston area, seeking more appropriate accommodations for their children with Down syndrome is often highly challenging.
Melanie Duncan, who came to Miranda’s hearing with several other mothers from Houston-area school districts in a show of solidarity, had to fight nearby Cypress-Fairbanks ISD for her third-grade son, Landon, to spend more time in a regular classroom.
Unlike the Pichardos’, a hearing officer ruled in her favor.
In Katy ISD, one mother was given the accommodations she requested for her fifth-grade son while another Katy mother had to win a similar ruling.
In Clear Creek ISD, one mother with two children who have intellectual disabilities said the district provides adequate resources for her kids, but she suspects children whose parents are less involved aren’t so lucky.
And despite all the progress, raising a child with Down syndrome can be, for many, a daunting task.
About 74 percent of births are terminated after a prenatal diagnosis of Down syndrome, according to Skotko.
Similar to segregation
The Pichardos brought in a special education expert at the University of Colorado, Christi Kasa, to speak at Miranda’s hearing after a day’s observation at Creekside Forest Elementary School.
Kasa determined that with the appropriate accommodations in place, Miranda would thrive in the regular classroom and benefit from higher expectations. It also would enable her to pick up on social cues from typically-developing classmates instead of mimicking the behavior of children in a less-structured special education environment.
Still, to Jaime Pichardo, Miranda’s school experience has always shared eerie similarities to segregation.
There was a period of time when the district tried to force Miranda to enter school through a side door that opened to the special education classroom.
This further upset the Pichardos, who had hoped to limit Miranda’s difference instead of highlighting it before she walks in the door.
Although the school eventually made an accommodation, Jaime said this is still an issue he must occasionally monitor.
“It’s huge,” Jaime said. “It’s like fighting the cook in the restaurant who you know is going to prepare your meal.”
If the new hearing officer rules in favor of Tomball ISD again, the family intends to keep fighting.
“Seeing Megan is a light at the end of the tunnel,” Jaime said of the family’s recent guest from Colorado. “This is the result of inclusion; someone who is in college, who has a job, who has her own opinion. We want that independence for Miranda.”
© 2016 Houston Chronicle
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