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Letters to the Editor
By Samuel Moore-Sobel

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“I have several situations with my own child…which I interpret as systemic and retaliatory disability discrimination,” says Derek Flake, a Loudoun County resident and special education advocate. “My daughter is a minority and has a rare bleeding disorder; therefore, she has in essence a double effect of adverse experiences in reference to disability discrimination.”

Flake alleges that his daughter was disallowed from participating in a high school track regional event because of her disability, despite the fact that she has been granted a Section 504, which includes provisions for the storage of medication at her high school.

Section 504, included in the Rehabilitation Act of 1973, is designed to help prevent discrimination against persons with disabilities. The plan helps protect children with disabilities by ensuring that they receive “equal access to public education and services” according to the DO-IT (Disabilities, Opportunities, Internetworking, and Technology) Center website.

This differs from an IEP (Individualized Educational Plan) since students with a 504 do not require special accommodations in the classroom.

Flake’s daughter, Makenzie, was previously diagnosed with Qualitative Platelet Disorder. This rare bleeding disorder requires medication to be on hand in case of emergency. Her parents and doctors are requesting for the nurses to provide the medication to first responders in the event of an emergency.

“Most emergency rooms do not have Factor on hand,” Flake says. The costly clotting medicine is either provided by the patient or purchased from a federally-funded Hemophilia Treatment Center.

“There is at least one HTC in every state,” Flake said.

The closest one to our area is Children’s Hospital in Washington, D.C.

“If she has experienced a severe bleed due to injury, it could take too long to get to her in Loudoun County or if she is traveling with the team in another part of Virginia,” Flake says.

The inability to access her medicine within a short time frame could literally mean the difference between life or death.

“We are not asking LCPS to administer,” Flake says. “but to only allow the medicine on school property and be kept in a refrigerator and transported to school sponsored events…”

When asked if there was a specific policy prohibiting medicine from being stored on school property, none was cited. “No, there is no specific policy against storing medication on behalf of a student,” Wayde Byard, LCPS public information officer said.

The county provided an explanation countering Flake’s version of events. “Makenzie was an alternate on the 4 X 100 relay team throughout the season,” Byard said. “This relay team ran a season-best ‘state qualifying’ time earlier in the year,” consisting of four total runners minus Makenzie. Makenzie’s exclusion was a decision allegedly made at the discretion of the coach.

“For the Regional Meet, the coach made a ‘coaching decision’ to run an alternate, Makenzie, in the race, allowing a faster runner to compete in individual events,” Byard said. This lineup was changed at the State Meet as “the coach reverted to the original lineup that posted the qualifying time.”

Flake’s grievances do not end there, however. Irregularities in 504 plan meetings were also outlined.

For example, the Flake residence received a letter post marked July 10, received on the 13, informing them of a meeting to occur at 8:30 the next morning.

“…It is documented that my wife, daughter, and I attended all previous meetings since moving here from Tennessee in 2015…,” Flake says. Flake’s wife attempted to reschedule, only to be told that this was not possible.

When asked what county policy is regarding parental notification of upcoming meetings, Byard said, “Parents are to be provided notice of meetings within a reasonable timeframe.”

Flake claims this did not apply in his case. “…They met and amended the 504 without us being involved,” Flake says.

These actions may have been in step with county policy. “The 504 regulations do not require that parents are part of the 504 team or require their participation in eligibility placement meetings,” Byard said.

This differs from rules regarding the early stages of the creation of a Section 504.

“An Office of Civil Rights guidance letter indicates that parental consent is required for conducting initial evaluations, but 504 regulations do not require parental consent for eligibility or placement decisions,” Byard said.

Flake and his family have averted tragedy in the past. Makenzie experienced an injury at a “school sponsored cheer state competition in the fall of 2016.” Since her parents were in attendance with the medication on hand, no further injuries were sustained. At the time, matters could have been made far worse by the fact that an individualized health plan (IHP) had yet to be created within the 504 plan.

Flake and his wife allegedly tried to develop an IHP by meeting with school staff, “but nursing refused to attend that meeting or the majority of her 504 meetings over the past year or so,” Flake says.

When asked if it was true that school staff has been unwilling to create an IHP on behalf of Makenzie, the County chose not to comment. “LCPS cannot comment on specific student’s Individual Health Care Plans (IHCP) because this would violate HIPAA (Health Insurance Portability and Accountability Act) restrictions,” Byard said.

An Individualized Health Plan (IHP) is created through the collaboration of many parties - including parents, coaches and various other school staff members. This plan is intended for “all students with a diagnosis that might require medication in a school setting,” Flake says. The fact that an IHP was not drafted for Makenzie left her in a compromised position. “An IHP is supposed to guarantee all need-to-know school staff would refer to it in case she has a bleed on or off campus,” Flake says.

Even in the face of adversity, Makenzie refuses to let her health get in the way of her dreams. The sixteen year old student participates in numerous school sports and activities such as “track, cheer, dance, gymnastics, and other clubs,” Flake says. She serves as a mentor within Stone Bridge High School through the BUDS CLUB program, offering her a chance to assist students with disabilities. Her work with this program led to an opportunity to speak in front of the Loudoun County school board this past school year.

Makenzie’s ultimate desire in bringing this story to light is twofold. “My daughter wants LCPS to stop the unnecessary retaliation and bullying,” Flake says. At the same time, she wants to see a shift in both environment and attitude for those diagnosed with disabilities. “She is passionate about helping create a school environment that students with all types of disabilities can experience inclusion,” Flake says.

Flake makes it clear that not all County staff is culpable in the mistreatment of his daughter. “Most of her teachers try to do the right thing but they are prevented by school leadership, nursing, and other district leadership,” Flake says. As a result, the family is advocating for “professional development training” for LCPS administrators. Perhaps the rarity of Makenzie’s case has caught administrators off guard. “We have 66 students who have been diagnosed with a bleeding disorder,” Byard said.

A lack of action at the County level has led Flake to take matters into his own hands. “I have recently filed OCR complaints concerning these issues as they have occurred within the last 180 days,” he says. His reason for coming forward with this story is a desire to help bring these issues to light in order to help others who could experience similar roadblocks in the future. “As we wait on that process to unfold I am seeking to bring awareness to the public concerning these systemic issues with LCPS,” he says.

Meetings with his daughter’s high school principal and 504 district coordinator have yielded little fruit.

“I’m hopeful that students with rare bleeding disorders can finally get a level playing field in public education especially in a district which highlights its rich history of academic gains among its non-disabled students,” Flake says. “So many people do not understand the ups and downs of dealing with uncontrollable and unpredictable bleeds,” Flake says.

His sense of worry over the well-being of his child is something all parents can certainly relate. “The constant thoughts or concerns related to the ever present possibilities of car accidents, sports injuries, and other emergencies” pervade Flake’s thoughts.

When asked if the county had any comment regarding the recent OCR complaint filed by Mr. Flake, Byard confirmed the complaint had been received.

“LCPS received the OCR complaint on August 30. No actions have been taken at this time.”


Samuel Moore-Sobel is a business process consultant and freelance writer. He currently serves as a member of the Loudoun County Disability Services Board and publishes a blog that can be found by visiting http://www.Holdingontohopetoday.com.

 

Loudoun County

Comments


I stopped reading after the word discrimination. A side effect of it’s complete overuse and abuse of the term in today’s society.


Your kid belongs at home or in a hospital now in school.

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