All children, including, of course, those with disabilities, have the right to a free, appropriate public education. But Arizona public schools are so grossly underfunded that students with special needs, like Olivia, are finding that as a practical matter, finding a school isn't nearly as easy as it sounds.
In 2009, Olivia was like any other active, happy three year-old living in the suburbs and attending a neighborhood preschool in southern Arizona. But on Monday morning, January 19, 2009 -- Martin Luther King, Jr. Day -- her life changed forever. While riding her tricycle in her cul-de-sac, Olivia was struck by a delivery truck after the driver had failed to notice her while backing up. Olivia suffered severe internal and external injuries, including spinal cord trauma resulting in complete paraplegia from the waist down.
Her recovery has been long and complicated, but fortunately Olivia's joyful spirit and engaging personality are matched by her strength and determination. She amazed everyone with her commitment to rehabilitation, and only three weeks after discharge began participating in adaptive sports, including archery and swimming, excelling at both. And she's delighted more than one audience with her rockin' wheelchair dance moves.
Watching Olivia thrive has helped her parents heal from the trauma of the accident as well. Her father, Joe, works full-time for the federal government. Her mother, Carolyn, left work to devote herself entirely to caring for Olivia, which provides tremendous gratification. While the challenges seemed insurmountable at first, the family has met each one head on with courage and tenacity.
But there has been one obstacle they had not anticipated, one that seems at times both cruel and absurd: a public school system that lacks the resources to provide Olivia with what she needs. Now, after 6 years trying without success to cobble together a workable plan, Olivia and her family face what may be one of their toughest challenges yet.
Returning to school
Everything seemed pretty good upon her return to preschool after the accident. They did an assessment of her special needs and developed an "IEP" (Individualized Education Plan) which laid out various accommodations and services Olivia would need to learn and thrive.
On paper, it seemed like a dream come true, and Olivia was eager to make new friends, learn to count and read, and develop other important skills along with her able-bodied peers. But implementation turned out to be a completely different matter.
In fact in numerous respects the school seemed completely unable to carry out its obligations, resulting in potentially life-threatening medical situations on more than one occasion during preschool and kindergarten. Eventually, Carolyn became so worried about her daughter's health and safety that by the end of kindergarten she concluded her only option was to homeschool her.
Right around this time, Olivia was crowned "Little Miss Wheelchair Arizona," a special honor that earned her a meeting with the Governor.
The homeschooling experiment
The following school year, in the comfort of their own home, mother and daughter worked together diligently on everything from phonics to math facts, while making time for Olivia's many hobbies and interests. But Carolyn soon became concerned. As a child, she herself had been diagnosed with dyslexia, a brain-based learning difference that affects reading and spelling, and Carolyn began to notice that Olivia was having similar difficulties. Carolyn realized Olivia may need a special education teacher trained in reading disabilities. She needed for Olivia to return to public school to obtain the proper help.
Exploring charter schools
Unable to stomach the idea of sending Olivia back to her previous school, Carolyn found a charter school that looked warm and welcoming. She and Joe had a meeting with the top administrators of the school to learn more about the program and discuss Olivia's needs.
At the conclusion, her parents explained that Olivia's IEP required her to use a device called a "standing frame" so that she could spend a portion of her day upright. The routine was prescribed by a doctor and its purpose was to avoid growth problems related to sitting too long.
The next day, Carolyn received an email letting her know that there had been a mistake. There was actually an "extended wait list" for the second grade. There was no spot for Olivia.
A new school
Carolyn continued to search for a school that would be suitable for Olivia, eventually enrolling her in a nearby public, performing arts magnet school for second grade. Still concerned that Olivia may have dyslexia, at the very beginning of the school year Carolyn requested the school re-evaluate her daughter.
After administering a few tests and gathering some new data, the school acknowledged that Olivia was significantly behind academically, but concluded that she didn't have any learning disabilities. She just needed a little extra help to catch up.
Carolyn reviewed the school's evaluations and reports to the best of her ability, but her own struggles with dyslexia made this difficult. So although she knew in her gut that there was something going on that was interfering with Olivia's learning, Carolyn decided to place faith in the school. She vowed to continue to work collaboratively to ensure Olivia made optimal progress and that she remained safe.
Unfortunately, shortly thereafter, Olivia fell out of her wheelchair at school because another child was permitted to push it (even though this was prohibited by her IEP), and Carolyn began to feel her faith had been misplaced. By this point, having done everything she could to resolve matters informally, and realizing that homeschooling was no longer a viable option, Carolyn filed a complaint with the state.
Something still wasn't right
As second grade came to a close, despite the "extra help" the school provided, Carolyn was still troubled by Olivia's academic struggles. She decided to pay to have Olivia evaluated privately by a top-notch professional who was an expert in diagnosing learning disorders. They completed the lengthy evaluation process over the summer.
As Carolyn had suspected, the results showed that Olivia had learning disabilities in several areas, including reading (it was, indeed, dyslexia), writing and math. She needed intensive, systematic, instruction by a trained special educator in order to make meaningful progress. Upon returning to school for third grade, Carolyn provided the written report and asked the school to reconsider its earlier findings and begin providing Olivia the services and supports she would need to catch up with her peers.
Unfortunately, however, although the school finally acknowledged the existence of learning disabilities, it did not offer a plan that would allow Olivia to close the significant learning gap that had developed over the past two years.
And Carolyn was losing patience. After all, she had begun raising concerns at the beginning of Olivia's second grade year, but it was not until the second half of third grade that the school finally (and begrudgingly) acknowledged for the first time that Olivia needed special education services related to learning disabilities.
The family considered taking legal action to obtain appropriate services that would compensate for all the lost time, but that could be very expensive. Plus they felt there was no time to waste. Every day that passed, Olivia was falling further behind, and she was in third grade, after which schools typically stop teaching reading altogether.
Back to the drawing board
So after conducting some research and speaking to local experts, Carolyn got to work looking for a private school that could help Olivia. She finally identified a few possibilities, but they were all about two hours away. It wasn't ideal, but there didn't seem to be any other option.
She called the first school on her list, and the administrative staff took her information over the phone. But when Carolyn brought up the issue of Olivia's physical disability, the conversation changed abruptly. The person on the phone offered to help her find a "more appropriate" school.
Undeterred, and knowing that her daughter's future hung in the balance, Carolyn continued to make calls and knock on doors. Eventually, she located a small private school that focuses upon teaching students with learning challenges like Olivia's. Tuition was over $20,000 annually, but at this point, what else was she to do?
With memories of the brush-off by the first private school, as well as the charter school debacle still fresh in her mind, Carolyn applied to the school and then steeled herself for the rejection. She could hardly believe the news when she learned Olivia would be accepted, to begin in August 2015.
Of course two hours each way would be too far to drive every day, and moving isn't an option because of the requirements of Joe's job. So Carolyn and Olivia have decided to rent a very small apartment close to the school. The family will maintain two households, dad staying back home. The financial cost will be substantial, far beyond the private school tuition alone. But Carolyn worries even more about the emotional toll, especially on Olivia, who is already worried about missing her dad and her many wonderful friends (not to mention her dog!).
Of course the family is delighted and relieved to finally find a private school that may be a good fit. And that's where they are choosing to place their energy and their thoughts. They prefer to move forward and focus on the positive, which is entirely understandable, given all they've endured.
But I can't ignore the injustice, and I hope anyone else who reads this blog is equally outraged.
Please, Arizona; can't we do better than this?
I've been reading a lot about high stakes, standardized testing and the devastating impact it has on students, teachers, and education generally. But of course I'm not a teacher, just a parent, so I don't have a true sense of just how bad it really is. To help me get the picture, I talk to my sister, Jessica, a social worker in a Title I school in Houston, Texas. Yesterday, she sent me a copy of a letter one of her teacher-friends had sent to the school district. With the friend's permission, I'm reproducing it here. In honor of the end of teacher appreciation week, I hope you'll read and consider sharing this teacher's emotional story.
"A Year of Teaching to a High Stakes Test - 10/19/14"
As we waited in line for the copy machine one morning during second period, one of my fellow teachers announced loudly enough for everyone to hear her: “This year cannot end soon enough for me. I can’t take this place much longer.” She said it firmly, without her usual smile. There were murmurs of agreement, and she continued. “On my way to work every morning, when I get close to this building, my stomach starts to hurt.”
Jenifer Kasten, J.D.
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