|Photo courtesy Wikipedia.|
I was gone from the blog for all of 2016 while dealing with the messiness that real life sent my way. My husband tested that bit about "in sickness and in health" with over half a dozen surgical procedures. Meanwhile, my son has hit both middle school and puberty, and...wowza. If your kids are still little, all I can say is brace yourselves.
I'm back, though, because those of us with food allergy children are facing some alarming changes in the way that established disability laws are going to be administered by the Department of Education.
I've always avoided discussing politics here because I want everyone to feel welcome. Occasionally I've dipped my toes into specific policies which affect our community. Today I'm going to take a much deeper dive, and ask you to come along with me. Please take the time to hear out my very personal story.
On my blog and public social media, I have two rules to protect my son's privacy. I've never used his name and I've never mentioned any of his medical issues other than his food allergies and asthma. Today I'm going to break the second one because I need to speak out to protect him.
My son is what is referred to in school disability accommodations as a "2E," a double exceptionality. What that means is that he takes the elevator instead of the stairs to get to his advanced math class. There he is allowed extra time to take tests and has permission to use his phone to take pictures of the information on the board, rather than copy it down. He doesn't have a 504 plan for his food allergies because he already has a ten page IEP, which has the additional four pages of his Individual Health Plan attached to it.
To say that I'm invested in the Department of Education's policies in regard to kids with disabilities, is something of an understatement.
You may have heard the news yesterday that Donald Trump's nominee for Secretary of Education, Betsy DeVos, was confirmed by Senate Committee and will now be voted upon by the full chamber, despite her performance in the committee hearings.
DeVos shocked some education policy wonks tonight when she suggested that states should decide when schools must comply with the requirements of the Individuals with Disabilities Education Act....The discussion began when Sen. Tim Kaine asked DeVos whether all schools that receive taxpayer funding should be required to meet the requirements of special education law.The entire Politico article is important reading, but the two items I want to highlight are Betsy DeVos' complete lack of familiarity with disability law and her advocacy for voucher programs.
"I think that is a matter better left to the states," DeVos responded. The exchange prompted gasps from some watching the confirmation. Sen. Maggie Hassan then followed up, noting that IDEA is federal law and "federal law must be followed where federal dollars are in play."
"Were you unaware that it is federal law?" Hassan asked.
"I may have confused it," DeVos said.
"I'm concerned that you seem so unfamiliar with it," Hassan said, adding that some private school voucher programs supported by DeVos aren't honoring students' rights under IDEA.
DeVos said that if confirmed, she'll be sensitive to the needs of students under the law.
"It is not about sensitivity," Hassan said. "It is ensuring that every child has equal access to a high-quality education. The reality is the vouchers that you support do not always come out that way."
Section 504 gives children with disabilities the right to a Free and Appropriate Public Education (FAPE), while the Americans with Disabilities Act Amendments Act of 2008 (ADAAA) specified that "hidden disabilities," such as food allergies, must be included in disability protections. In addition, IDEA, the Individuals with Disabilities Act, mandates services that children must receive for specific disabilities. The Office for Civil Rights at the Department of Education enforces those rights.
Betsy DeVos' is clearly unqualified to enforce the laws that allow our children to attend school safely.
Her education background is as a proponent for charter schools and voucher programs, including McKay Scholarships, the Florida voucher program for K-12 students with disabilities, which DeVos briefly mentioned in the hearing, and were criticized by Sen. Hassan as requiring parents to sign away IDEA protections. It's worth noting that Maggie Hassan originally entered politics as an advocate for her son with cerebral palsy.
Fortunately, I applied for a McKay Scholarship for my son a few years ago, so I can tell you exactly how well this type of program worked for our food allergy kid.
At the time, the program offered up to approximately $14K for students with disabilities to use toward private school tuition per year. The amount each student receives is based upon the number of services that a student uses. My son qualified for about $10K. I checked into nearby private schools, and found a lovely Montessori school which cost about $16K a year.
That's the first obvious problem. These programs are only designed to help upper and some middle class families, not lower income or ones that rely on public school buses to transport their children.
That $6,000 difference was too much of a stretch for us, but we have some amazing family members who have regularly helped us with our child's outrageous medical expenses. I felt them out, and they encouraged us to apply.
After going through the entire interview and application process, my son was turned down. Partly because the school did not think he was self directed enough (a fair assessment at the time), but primarily because they did not feel that they could keep him safe because of his food allergies.
Let me repeat that. It is legal for a private school to turn down a student because the administration does not want to put food allergy accommodations in place. If a school does accept a child with disabilities, including food allergies, whose tuition is being even partially paid with public funds, the parents are required to sign away their child's legal protections.
This is what Betsy DeVos wants our education tax dollars to fund. I cannot urge you strongly enough to call both your senators, especially the Republicans, and urge them to vote against her appointment.
I am truly glad to be back on the blog, despite the frightening circumstances which brought me here, and hope to get back to the recipes soon. If you choose to leave a comment, thank you! Be aware, though, I will not approve abuse or off topic political commentary.