Parents, know your special education rights

Here’s what your school district might not be telling you about your child’s IEP, and what you can do about it

Excerpted with permission from “Your Special Education Rights” by Jennifer Laviano and Julie Swanson. Copyright 2017, Skyhorse Publishing. Available for purchase on AmazonBarnes & Noble and IndieBound.

It all seems very simple. A special education law, the Individuals with Disabilities Education Act (IDEA), was enacted by Congress in 1975 (originally called the Education for All Handicapped Children Act) to ensure that children with disabilities have the opportunity to receive a free appropriate public education, just like other children.

But nothing is ever simple.

At least once a day, a parent we represent asks us, “Why would they do that? It doesn’t make any sense.” Sometimes, the decisions that school districts make don’t make sense. In those cases, we remind our clients that you can’t use logic to talk someone out of a position they didn’t use logic to get into.

However, more often than not, there are reasons for what may seem like totally arbitrary decision making. It’s just that those reasons are unknown to most parents, who don’t have the benefit of dealing with numerous school districts every single day. When you have that perspective, as we do, you start to realize that there are multiple agendas and competing interests operating within a school district that motivate the decisions made at Individualized Education Program (IEP) meetings. (IEPs are legally required documents, generated by a team of educators and the parents of the child, which serve almost like a contract between the school and the parents. They outline what the school intends to provide the child.) This perspective includes understanding that each of the educators has her own perspective, job, role, and sometimes, fears. As a parent, you would understand why someone responded a certain way at your child’s meeting if you knew that one of the people there is another person’s direct supervisor. Or that regular education teachers often don’t feel the same pressure to follow the orders of the special education administrator as someone who reports directly to that administrator. Or that the behind-the-scenes politics of the building are influencing how the educators around that table are interacting with one another. Or that the way your state sets up certain funding mechanisms is, in fact, a huge barrier to getting what you want at the meeting. But nobody around the table is likely to tell you all of this.

Let’s use an example from our state to illustrate what we mean. In Connecticut, as in most states, our Department of Education has a process of approving private special education schools, which thereby authorizes it to provide special education services to students who have IEPs. The state maintains a list of approved programs, and school districts can place students at these programs through their IEPs. Connecticut also has a funding structure for school districts whereby the state will contribute significant monies to a child’s program if the district goes over their “excess cost threshold” for that student. Basically, the state will defray costs for a student whose program becomes extremely expensive. But here’s the kicker: the state will only defray those costs if the program the child is attending is on the state approved list. It will not contribute to a private special education program that is not approved by the state. Connecticut, like many states, has a number of private special education schools that elect to remain independent. Those schools aren’t on the approved list. Therefore, the districts can’t get the excess costs for them covered.

This funding structure can have really strange results. We’ve seen cases where a child is placed at a non-approved, private special education school, and is thriving. The district team members observe the child and agree the program is the perfect fit for him. The parents agree that program is the appropriate program for him. Everyone on the IEP team says, “Yes, this is the right school for him.” But because the school is not on the approved list, the district denies the request for the placement (and subsequent funding), instead offering an approved program that is even more expensive than the non-approved program! Rightly so, the parents say, “Everyone agrees this is the right school and that he’s doing beautifully there, but the answer is no?” The IEP team in this case is making a decision that defies logic—until you understand that the state is pulling the strings here just like Oz behind the curtain.

Once you understand the hidden motivators and obstacles to special education decision making in public schools, the seemingly mysterious answers you have been getting will start to make sense.

Your Special Education Director May Not Know Who You Are

Many parents assume that, simply because their child has a disability, the Director of Special Education in their district is aware of the case. That is just not so, especially in a larger district. It would be impossible for one administrator to be aware of every child with a disability in, say, Los Angeles or Chicago. Even in much smaller cities than that, usually there is a structure of administration, and the Special Education Director entrusts her team to handle the day-to-day obligations of the district to the children in each building. In many cases, there are building-level administrators who are responsible for convening special education meetings; sometimes they aren’t even special educators! For this reason, we strongly advocate that parents find out who the Director of Special Education is in their district, and work toward meeting and ultimately building a relationship with her.

Directors manage a very large budget. In many school systems, the director reports directly to the superintendent, and in most systems, the Director of Special Education is a district-wide administrator. This means that your child’s building principal is under the Director of Special Education, not the other way around. According to, the average special education director in the United States makes $94,184.00 per year. That’s an average. In many states, directors of special education make well over six figures a year. It’s an important job, and it should be.

And yet, we have found that some special education administrators do not have even a basic understanding of their legal obligations. In some situations, this means that they are failing to follow the procedures outlined by federally mandated regulations. In others, it means that if a parent brings in a non-attorney advocate to an IEP meeting, the district brings in its lawyer because the director doesn’t know how to navigate the complex laws involving special education.

Think about that: in these cases, parents are expected to go up against an administrator who has at her disposal an attorney to bring in when things get even a little bit complex. That should tell you something about how imbalanced the power between parents and their school districts can be and often is. Unless a parent has the means and ability to hire a lawyer or good non-attorney advocate, he will be facing a Herculean task in the event of a legal dispute.

Let us give you just one example of where we see administrators making a basic legal error that will ultimately cost their district far more than if they understood the law. The IDEA states that a parent has the right to ask for an Independent Educational Evaluation (IEE) if they disagree with their school district’s testing. If the parent asks for the IEE, the district has the right to say no, and refuse the evaluation at public expense. However, if it does that, it must, without delay, file for a due process hearing defending its own testing before a hearing officer. (Read more about IEEs in chapter 14.) This is a requirement under federal law. Yet many directors have no idea that they are required to file for a hearing, even when we tell them so. They simply say no to the IEE and then do nothing. Eventually, many of these parents figure out that the district was required to act when it denied the request, and at that point, if the director is getting even decent legal advice, the school district will just go ahead and pay for the outside evaluation. But by then, the district is incurring legal fees on top of the IEE, as well as eroding the faith and trust of the parents in the competence of the district.

Wouldn’t it be better if the director knew what she should have done the first time around?

As we have acknowledged, we have a very cynical view of many issues because of the nature of the cases we see. However, we do know that the Director of Special Education is typically the person with the most authority in your district to make decisions about your child’s special education program. Unless you plan on moving out of your school system, you may be working with this person for many, many years. Building a good, respectful, cooperative relationship with him early on in your child’s education may make an enormous difference in the outcomes for your child.

If you are in the unfortunate position of residing in a district where your Director of Special Education is not discharging her obligations in accordance with the law, speak up! Make your district hold your director accountable for its obligations to students with disabilities. Go to your school board meetings, point out the problems, and ask administrators to fix them. Ask for regularly scheduled annual training on the IDEA, Section 504, and other legal obligations of school districts, and continuing education for the director and all educators, staff, and administration.

Who’s Chairing the Meeting, Anyway?

We often receive phone calls from parents right after the wrong decision has been made for their child at an IEP team meeting.

Among the first questions we ask parents is, “Who was chairing the IEP meeting?” All too often parents don’t know the answer to this simple question. It’s important to know the answer and here’s why. The IDEA is clear about the specific roles that must be filled at an IEP team meeting for your child. In fact, on the list of required members of the IEP team is “a representative of the public agency [usually the school district] who is qualified to provide, or supervise the provision of, specially designed instruction to meet the unique needs of children with disabilities; is knowledgeable about the general education curriculum; and is knowledgeable about the availability of resources of the public agency.”

This should be the person who is chairing the meeting because he is knowledgeable about the availability of resources of the public agency. Should available resources drive all decisions? Of course not. But it’s critical to know that money factors into the decision making process (so much so that we devoted chapter 3 to it). Key decisions live and die over the resources available to the school district. Your school district carefully protects its resources and knows exactly just how far they can be stretched before they impact the special education budget.

Back to the point about who’s chairing the meeting. This is one of those requirements of the IDEA that is often not followed and, unfortunately, can impact the outcome of a meeting and services for a student.

So here’s the bottom line. Pay attention to who is chairing the meeting on the invitation you receive. Every school district is different, so this person may be referred to as the administrator, supervisor, chair, or coordinator. Confirm that this person—regardless of title—is knowledgeable about the district’s resources.

There are other required members of the IEP team meeting as well:

General. The public agency [usually your school district] must ensure that the IEP team for each child with a disability includes:

  1. The parents of the child
  2. Not less than one regular education teacher of the child (if the child is, or may be, participating in the regular education environment)
  3. Not less than one special education teacher of the child, or where appropriate, not less than one special education provider of the child
  4. A representative of the public agency who:
    1. Is qualified to provide, or supervise the provision of, specially designed instruction to meet the unique needs of children with disabilities
    2. Is knowledgeable about the general education curriculum
    3. Is knowledgeable about the availability of resources of the public agency
  5. An individual who can interpret the instructional implications of evaluation results
  6. At the discretion of the parent or the agency, other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate
  7. Whenever appropriate, the child with a disability

What Your School District Isn’t Telling You

Chances are that the school team is not going to tell you who is authorized in your district to allocate funds and other resources. Why not? Money; the staff may change; or they may not realize that parents are unaware of who makes these decisions in their district. So how do you figure it out? A good place to start is with the notice of the meeting, which is typically the written invitation you get to the IEP meeting. If you’re reading this and asking yourself, “What invitation?”, you’ve got bigger problems, because the IDEA requires that school districts inform you of the IEP meeting in writing, including who is invited to attend, what their roles are, and what the purpose of the meeting is. You must receive a written notice in advance of the IEP team meeting. Check the number of days of advance notice the state requires that you must be given to receive it prior to the meeting; your school district isn’t legally permitted to just spring an IEP meeting on you without giving you advance notice, and usually enough time to prepare. Pay attention to the invitation. You may be expecting someone to attend who is not on the invitation, or someone is on the invitation you don’t know. Reviewing the invitation attendees prior to the meeting allows you to ask questions if something seems off to you, or to ask your school to invite someone they have left out.


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Districts see ‘unsustainable’ special education funding crisis looming



With students and teachers back in the classroom, a tumultuous summer for public education has given way to relative calm in local school districts — for now.

The Kelso School District passed its $62 million budget for the new school year on Aug. 14 and the Longview School District followed suit with an $87 million budget two weeks later. Teachers in both districts won raises this year after both school boards approved new collective bargaining agreements.

But looking forward, there’s still a high level of uncertainty that’s clouding one area in particular: special education.

As part of lawmakers’ solution to the state Supreme Court’s McCleary decision, the Legislature increased the amount of money it gives local districts for children with special needs.

In that decision, justices ruled that the state must fully fund the cost of basic education and stop forcing districts to rely on local property taxes for basic expenses such as teacher salaries.

Under Washington law, special education is basic education. However, the Legislature’s last-minute McCleary fix — unveiled and passed in less than a day — still does not completely reimburse every district’s actual special education costs.

Lawmakers increased the cap on state funding for special education from 12.7 percent of a district’s student population to 13.5 percent. That means if more than 13.5 percent of a district’s enrolled students have a learning disability, the district has to shoulder those costs.

And the price of special education has spiked in recent years as research has allowed educators to identify more students with special learning needs.

That could be a major problem going forward because the state’s new public education funding plan hinges on a complicated “levy swap,” which increases state property taxes while capping local property taxes.

In the past, school districts have relied on local levy dollars to make up for the widening shortfall between state and federal dollars and the true cost of special education.

“We’ve just seen our costs go through the roof with special education in the last couple years,” said Scott Westlund, executive director of business and operations for the Kelso School District. “If that continues to grow and we have to continue to use local funds to do that, it’s not going to be sustainable,” he said.

Increasing costs

Part of the reason why special education costs have risen so much over the past several years is due to an increase in the number of children with complex needs.

According to Longview Special Education Director Elizabeth West, the number of children with behavioral and mental health needs has increased dramatically in relation to the number of children with learning disabilities.

“We’re seeing a lot more complex children and those are the children that have increased funding needs,” she said.

Even with stable enrollment, the Kelso School District hired 10 more special education staff this year to meet its students’ special education needs, Westlund said.

The adoption of assistive technology and learning devices for students with special needs has also led to an increase in costs, West said.

While the state boosted its special education allocation to the district by roughly $800,000 for the 2017-2018 year, Kelso’s special education expenses increased by $1.2 million.

Overall, the district’s special education costs have shot up 33 percent from two years ago.

In Longview, the district will get roughly $900,000 this year in additional special education funding from the state while seeing its costs increase by nearly $2 million compared to last year.

Longview’s special education costs have increased nearly 25 percent since the 2015-2016 school year.

Both districts also receive some federal money for special education, but that funding has remained relatively flat over the past decade.

“Our expenditures far exceed our revenues, both state and federal, so locally it’s being absorbed by our local tax dollars,” said Patti Bowen, business and operations manager for the Longview School District.

Adding to the uncertainty, lawmakers placed new restrictions on how districts can use money from local school levies. Under the McCleary fix, local levies can only be used for “enrichment” purposes but the Legislature has yet to define what qualifies as enrichment. Some districts have interpreted the new education funding law to mean that local levy dollars can’t go toward special education.

Westlund said he’s under the impression that local dollars can pay for special education. But that point could be moot because lawmakers also capped local property taxes at $1.50 per $1,000 of assessed value as part of the McCleary deal.

“There is a restriction on the amount that we can actually go out and ask for, so yeah that could have a severe limitation upon our ability to meet those needs especially in the special education area,” he said. “That’s why I think if we continue to grow it’s not sustainable given the current tax structure.”

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Helping Children With Autism Thrive In Summer When The Routine Changes



During the warm months, kids can lose some of the academic momentum they gained over the school year. This “summer slide” is a risk for all children, especially those with autism.

“There are 10 weeks of no school. Ten weeks is a very long time,” says Sharon Cable, of Canton. Her son, Alex, now 23, liked the structure of the school day and became very anxious when the routine changed in June. So, he participated in the Summer Social Skills Immersion program at the FOCUS Center for Autism in Canton. Experts say vacation is actually a great time for kids with autism to learn in a fun, different way.

“Summer is key,” says Donna Swanson, executive director and co-founder of the FOCUS Center for Autism, open since 2000. “It’s when — I think — we do our absolute best teaching. It’s different than being in school. [The kids are] more open, they’re more relaxed.”

The summer program, for kids ages 6 through 18, runs three times a week from June 27 to Aug. 17, in cooperation with The Wilderness School in East Hartland. The children take hikes, complete crafts and work with animals. They also embark on field trips to experience new people and places. “They learn how to transition, how to be out in the community which is really important. They want to belong,” says Swanson.

The FOCUS Center for Autism has grown and now includes a school. The Fresh Start School is a new, state approved program for children with autism spectrum disorder between the ages of 11 and 18. “We’re really a clinical program. We address the psychiatric, emotional needs that are getting in the way — that are the barriers that keep kids from being in a regular school system,” explains Swanson.

The school uses milieu therapy, which utilizes everyday events and interpersonal interactions for practical learning. “We teach kids how to manage their anxiety, how to navigate, how to advocate for themselves. Instead of using behavior, they use their words,” she says. Fifteen students are currently enrolled in the school. A graduation ceremony will be held Wednesday.


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Glendale school uses touch-screen computers to help teach severely autistic students


A Glendale-based nonprofit school is using a new computer system that allows severely autistic students to learn foundational skills.

Tobinworld’s Brill School of Autism, which includes about 80 low-functioning students, is using touch-screen computers to help autistic students learn how to count from one to 10, memorize colors and recognize safety signs.

The school utilizes an online precision-teaching program, which is a method of teaching that targets basic skills and uses a frame-like approach that reinforces known skills while introducing new ones.

“It’s an accelerated form of learning, and it’s evidence-based teaching,” said Ray Hairapatian, principal of the Brill School of Autism.

In evidence-based teaching, each student’s work is recorded in a database that is monitored by an administrator, who then gathers the information and compiles it into reports for teachers and parents. The data helps the school keep track of how a student is doing during each session.

By the following school year, a new goal is created for the student through evidence-based research.

“If something is too intensive, we’ll find out why and go back to the drawing board,” Hairapatian said. “Whatever the case may be, we’re looking at ways to improve it, and the kids have responded really well to it.”

While touch-screen computers have been used in Tobinworld for some time, they’re a new feature in the Brill School of Autism, said Judy Weber, Tobinworld’s executive director. The computers cost $3,000 each, Weber said, and Brill currently has 100 of them.

Brill students range from 5 to 22 years old. In each classroom, Hairapatian said a teacher and four instructional aides walk around, monitoring students and praising their success.


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When non-white autistic students get in trouble, schools have a track record of escalating tensions and treating it as a criminal matter. Two recent cases in Orange County, Florida, help illustrate the problem.



Why would a school cop in Florida throw a slender, autistic fourth-grade student to the ground? You might assume that the child must have presented some kind of serious threat to himself or others, that other skilled experts had already tried de-escalating interventions, and that there was no other choice. Such was not the case for 10-year-old Seraph Jones. This spring, a school cop threw him down and held him against the ground with sufficient force to cause rug burn.

It turns out that Seraph’s worst day at school—so far—happened because he was clicking a key too loudly, then ended up trapped in a situation where he had no good way to safely calm down.

By the time Seraph and I connect via Google Hangouts, the rug burn on his face has long since healed. He’s a beautiful boy with light brown skin, expressive eyes, and an infectious smile. In between talking about general frustrations about school, we make up games. Most of them involve zooming our eyeballs or palms up to the camera, way too close, then laughing and laughing at the weird images on our screens. After a bit, Seraph shoos his mom, Andrea, away. She’s been trying to keep him on track with the interview, but I’m at least as incorrigible as he is. I like seeing him smile. I hate breaking the mood by asking him about the time a school resource officer threw him to the ground and pinned him there.

The violence that disabled children experience in American public schools should be a national scandal. It’s certainly gotten enough coverage. In 2014, ProPublica published “Violent and Legal,” finding over 267,000 incidents of violent restraint in 2012. In 2015, the Center for Investigative Reporting offered a state-by-state analysis of the school-to-prison pipeline, showing that black, Latinx, and disabled children—especially those who were non-white and disabled—were far more likely to be arrested and charged than other children. And, just last May, Education Week published a study finding that at least 70,000 students covered by the Individuals With Disabilities Education Act (IDEA) had been restrained or secluded in public schools in 2013–14. Because reporting standards vary, that’s likely an undercount. Between these large-scale stories, there have been thousands of viral and semi-viral tales of abuse, restraint, arrest, and even death. We’ve covered some of them here.


Seraph Jones.

And yet, despite the media coverage, we have yet to see any coherent national response. Based on our best available information, the rates of violence at the hands of school officials and criminalization of disabled children, especially those who are multiply marginalized by factors such as race or poverty, continue unchecked. I’ve been following this beat for years, trying to leverage outrage over individual incidents into structural change, and often responding to families who reach out for advice. Still, it was a surprise this spring when, within the space of a few days, two different families in Orange County, Florida (in the shadow of Disney World, as one parent describes it), contacted me about the dangerously escalating experiences that their sons were having in school. I spoke with both families, read every document I could get my hands on, and reached out to the school districts and states attorneys for comment (with few results). Both families are determined. Neither is optimistic. Here are their stories.

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Seraph’s story, like so many of these tales, starts with something small. In his case, it was testing day. Testing is a fraught time, with students and teachers under lots of stress, even in fourth grade. After 80 minutes of being forced to sit still for the test, the warning signs should have been clear. Seraph tells me that, following the test, the teacher put on a movie, but the sound bothered Seraph, so he put on headphones at a computer. The headphones didn’t drown out the sound, so he started hitting a key over and over again to make a loud noise. That, right there, was the original “offense” that ended up landing him face-down in the carpet, his skin abraded: aggressive key hitting.


Seraph was sent from the room, with the assistant principal, dean, and school resource officer (SROs are, essentially, school cops) summoned to address the situation. Seraph made it to the media room, according to the incident report, where he struck a teacher and was thrown to the ground. As he relates the story (and as confirmed by his mother), he admits he went in without permission, looking for a good space to try and recover. Another teacher began to read a book to try to calm things down, but Seraph was upset by that noise too. Hands over his ears, he approached the teacher and struck at the book with his elbow.

This isn’t good behavior, but it’s also not dangerous. Try, for a moment, to hit something with your elbow while keeping both hands on your ears. It’s nearly impossible to generate much force, even if you are fully grown. Seraph is a slight boy; when he hit the book with his elbow, he was quickly taken to the ground by the school cop, his face ground into the rug, his skin burned against it.

Seraph was suspended briefly before being allowed to return to school, but since then, according to his mother, things have gotten worse. She’s trying to raise money to get a therapist to explicitly link his behaviors to his disability, and thus make the school write a behavior plan that might protect him. “Since the fundraiser was put up, he has moved schools in the district, but has again been restrained by school personnel and spent hours crying without anyone calling his dad or I despite my request,” she says. “Until we get a decent protective behavior plan, this is going to keep happening.”

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Ashton Gelfand’s story isn’t really all that different. He’s black, 14 years old, and recently diagnosed with autism, attention-deficit/hyperactivity disorder (ADHD), and bipolar disorder, according to both his father, Bryan, and local news reports. His family also lives in Orange County. Ashton attends West Orange High School, a massive school with over 4,200 students. As we spoke, Bryan wearily laid out a familiar, frustrating sequence of events: Ashton has had three different teachers and two counselors this year, not because he’s been moved but because staff turnover is so high. The first counselor, Bryan tells me, “was good. Some thing her hands were tied on, but we could get ahold of her. She had special education knowledge.” The new counselor didn’t know much about special education, and, moreover, the parents were never able to meet with her before “everything went south.”


Ashton Gelfand with his father, Bryan.


Ashton has no individualized education plan (IEP). According to his father, he was told he’d have to flunk first to get an IEP. That’s not legally true, but it’s emblematic of understaffed, underfunded, big school districts that rely on parents who don’t know or lack the resources to defend their rights. Ashton does, however, have what’s known as a “504 Behavior Plan,” precisely the document that Seraph’s parents are trying to get. Such plans are often coercive—we’ll get to that—but they are supposed to provide clear procedures to help children with specific behavioral needs to avoid escalation. Too often, as with Ashton, that didn’t happen. His father tells me that he kept finding out about situations in which his son wasn’t allowed to go cool down, especially by substitute teachers. “About two to three weeks before ‘the incident,'” Bryan says, by way of example, a substitute teacher refused to allow his son to leave a too-noisy room and go to the office and cool down, despite the 504, which stipulates that “Ashton will have a cool-down pass when needed.”

Ashton’s parents knew things were getting worse and put in for a transfer to a smaller school (where his sister attends), but the process was slow. Weeks passed. “The incident,” as Bryan calls it, “happened at 7:30 in the morning. I get the approval for his transfer at 2:30 that day.” That morning, Ashton and a friend entered class, where, yet again, another substitute teacher was in charge. The kids were joking about being gangsters. According to Bryan, “They came in loud, so the sub teacher, said, ‘Shut up and open up your laptops.'” When they didn’t quiet down fast enough, she told Ashton to get out of the classroom. Bryan tells me: “Sub teacher said just get out, but my son went to open up his laptop. She slapped my son’s hand away. As soon as she slapped his hand, zero to 100 for my son.”


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The 7,600 Mile Hike Update


Join us in spirit on the way to Kilimanjaro!

As you may know, PJ and I are climbing Mt. Kilmanjaro this September in support of Beyond Limits!

Being 7,600 miles between Harford County, MD and Mount Kilimanjaro we hope to log that many miles with our training hikes, and the hikes, (or walks, runs, swims, bikes), of our supporters!  Any Fitness Tracker (e.g. Fitbit) logging by our followers and donors counts too!

As of June 1st, we’ve all logged over 2,500 miles.  We’ll need to step it up over the summer to reach 7,600!

A Facebook page has been created so you can share the miles that they’re walking/hiking/running; and add photos of the places you’re going!  Please check it out and let us know how many miles you log each week.


Visit our Facebook Page and join the “7,600 Mile Hike”! >



Century-old drug could provide new approach to autism


In a small, randomized Phase I/II clinical trial (SAT1), researchers at University of California San Diego School of Medicine say a 100-year-old drug called suramin, originally developed to treat African sleeping sickness, was safely administered to children with autism spectrum disorder (ASD), who subsequently displayed measurable, but transient, improvement in core symptoms of autism.


A colorized transmission electron micrograph of cellular mitochondria, which produce a small molecule called ATP. Inside cells, ATP serves as an energy source but released outside the cell, it acts as a danger signal. Suramin inhibits the signaling function of ATP, eliminating the cell danger response associated with autism.
Credit: Thomas Deerinck, National Center for Microscopy and Imaging Research, UC San Diego


ASD encompasses a group of developmental disorders, often characterized by communication and language difficulties, repetitive behaviors and inability to socialize. The Centers for Disease Control and Prevention estimate that ASD occurs in 1 in 68 children, with the condition 4 times more common in boys than girls. ASD has no single known cause, but may involve both genetic problems and environmental factors, such as viral infections, pollutants or complications during pregnancy. One of the aims of the SAT1 study was to test the cell danger hypothesis as a possible unifying theory that contributes to the pathogenesis of ASD.

Writing in the Annals of Clinical and Translational Neurology, first author Robert K. Naviaux, M.D., professor of medicine, pediatrics and pathology at UC San Diego School of Medicine and colleagues describe a novel double-blind, placebo-controlled safety study involving 10 boys, ages 5 to 14 years, all diagnosed with ASD.

Five of the 10 boys received a single, intravenous infusion of suramin, a drug originally developed in 1916 to treat trypanosomiasis (sleeping sickness) and river blindness, both caused by parasites. The other five boys received a placebo. The trial followed earlier testing in a mouse model of autism in which a single dose of suramin temporarily reversed symptoms of the neurological disorder.

The results in humans were equally notable, though the purpose of the SAT1 trial was fundamentally to test the researchers’ underlying theory about a unifying cause for autism and to assess the safety of suramin, which is not an approved treatment of ASD. In fact, there are no approved drugs to treat the core symptoms of ASD.

All five boys who received the suramin infusion displayed improvements in language and social behavior, restricted or repetitive behaviors and coping skills. Assessment of improvements was based upon observational examinations and interviews using standardized tests and questionnaires, such as the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), the Expressive One Word Picture Vocabulary Testing (EOWPWT), the Aberrant Behavior Checklist (ABC), the Autism Treatment Evaluation Checklist (ATEC), the Repetitive Behavior Questionnaire (RBQ) and the Clinical Global Impression (CGI) questionnaire. To minimize misinterpretation of natural day-to-day variations in symptoms, parents were asked to mark a symptom as changed in the 6-week CGI only if the symptom lasted for at least one week.

The researchers found that ADOS-2 scores were improved in the suramin treatment group at six weeks, but not in the placebo group. Specifically, ADOS-2 scores improved by -1.6 points in the suramin group, but did not change in the placebo. Children who have a score of 6 or lower in ADOS-2 may have milder symptoms but no longer meet the formal diagnostic criteria for ASD. A score of 7 to 8 indicates the child is on the autism spectrum. Nine and above classifies the child as autistic.


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Parents See Benefits in Spec. Ed. Vouchers, But No Silver Bullet

While the senators were lecturing, Tera Myers was fuming.

Myers, the mother of an adult son with Down syndrome, had traveled to Washington to support Betsy DeVos, then the nominee for U.S. secretary of education, during her confirmation hearing. DeVos, a staunch supporter of school choice programs such as vouchers, faced pointed questioning from skeptical lawmakers at the January hearing. Several of them said that such options leave students with disabilities behind.

Myers, who lives in Mansfield, Ohio, said she felt the questions were deeply unfair. Not only had a voucher program helped Myers provide the best education for her son, she said, but the choice options had pushed school districts in her area to improve their offerings as well.

“No one, from my perspective, is saying, ‘I don’t like public school,’ ” Myers said. “I believe, just from my experience, the competition has created better public schools and better private schools.”

But in Port St. Lucie, Fla., Lynn Ambert watched the same hearing live on C-SPAN with far more skepticism. Her 9-year-old son is eligible for a voucher under Florida’s program, and she wanted to use it. However, no private school in her area will accept Ayden, who has autism and behavioral disabilities. Even the schools that advertised on their websites that they offered behavioral programs turned her away.

Federal Backing

School choice options, such as charter schools, vouchers, and educational savings accounts, have powerful support in Washington right now, including in the White House. In a recently released budget blueprint, the Trump administration has called for $1.4 billion in school choice funding; DeVos has also indicated her approval of choice for students with disabilities.

But for such students, some of those options come with trade-offs, including the loss of specific protections under the four-decade-old Individuals with Disabilities Education Act.

While politicians debate how the federal government should back school choice, many states have forged their own paths by offering school choice programs aimed specifically at students with disabilities.

Many parents who accept those options say that the powers and protections that are outlined in the Individuals With Disabilities Education Act existed for them only in theory. Battling a school district over their child’s education was something they didn’t have the time, money, or knowledge to take on.

“Are you going to spend your time arguing with politics, or are you going to teach your child?” said Lynn McMurray, a Prescott, Ariz., mother who is home schooling three of her children using Arizona’s Empowerment Scholarship Account, which provides state funds to parents that they can use to pay for tuition, school supplies, online programs, or therapy.

Mixed Feelings

But even parents who are happy with their school choice say they realize that they are benefiting both from having good private school options available to them and financial resources to supplement a voucher, if necessary.

Cynthia Greaux of Royal Palm Beach, Fla., uses Florida’s McKay Scholarship to pay part of the tuition costs for her two children, Tyler, 14 and Chloe, 8. Both have dyslexia. McKay is the oldest and largest voucher program in the country specifically for students with disabilities; more than 31,000 children in Florida use that program to pay for public or private school.

Greaux said she knows that not all parents can pay thousands of dollars for expensive neuropsychological assessments, as well as the balance of private school tuition for one child, let alone two.

She noted that her public school district offers a multitude of choices—from arts-focused programs to certificates for budding web designers. Why not, Greaux asked, a special program for children with dyslexia?

“I don’t feel like my kids’ needs were all that special,” she said. But her son, who was doing well in public school through one reading program, was switched to another that didn’t work for him.

“By putting the right services at the [public] schools, you could solve a lot of problems. … I find it mind-boggling that they can’t staff for such a common learning disability.”

The umbrella term “school choice” encompasses a variety of options, including magnet schools, public charter schools, and other programs that help pay for private school tuition or for services for home-schooling parents.

The view from the White House has been to support them all.

In a February address to a joint session of Congress, President Donald Trump urged lawmakers to pass a school choice bill aimed at “disadvantaged youth.”

“These families should be free to choose the public, private, charter, magnet, religious, or home school that is right for them,” Trump said.

The president did not specifically mention students with disabilities. But DeVos, whose seeming unfamiliarity with special education policy prompted stiff opposition from some disability advocates before her confirmation, has said that students in special education need a full spectrum of options.

“In far too many cases, the parents of students with disabilities in the public schools are currently not satisfied with the services their children are receiving,” DeVos wrote before her confirmation in response to one of more than 100 questions from Sen. Patty Murray of Washington state. Murray is the top Democrat on the Senate education committee.

“But too often, the only way that parents can obtain what is best for their child is through legal recourse. This can take months and sometimes years,” DeVos wrote. “Children don’t have years to wait for courts to decide.”

Students’ Rights

As long as students with disabilities choose to remain within the public school system, however, they have an array of protections. For example, a student’s individualized educational program, or IEP, must be drafted with parent input. It’s also harder to suspend long-term or expel a student with a disability than a student without one. Except in certain serious cases, schools must go through a process to determine if a student’s misbehavior is a manifestation of his or her disability.

For students with disabilities enrolled in private school, those rights do not exist. Nor do students in private school retain an individual right to special education services, though local districts are supposed to provide “equitable services” to private school students within district boundaries.

The loss of protections, along with a lack of viable private school options, could be reasons why private schools are used less often by students with disabilities who are covered under the IDEA. While about 10 percent of all school-aged children are enrolled in private school, just over 1 percent of students with disabilities covered under that law are placed by their parents in private school. (Charter schools are public schools, but independently run.)

But Myers said that the private school her son used, through the support of Ohio’s Jon Peterson Special Needs Scholarship Program, offered her far more control than the public school system did.

“I found due process to be a hindrance to me. I didn’t have the money for it, I didn’t have the time for it,” Myers said. “At the public school, I was at their mercy.”

In contrast, at her son’s private school, she was able to negotiate an appropriate education for her son. And if she didn’t like what the school was doing, she had the option not to pay the school and to find another educational option, she said.

Myers eventually took a position at her son’s private school, Mansfield Christian School, and worked with several nearby districts that had families considering the Peterson scholarship. Her once-rocky relationship with her local school district has improved dramatically, she said, and she has strong partnerships with others.

“Sometimes, it takes that alternative method to fix the system as it is,” she said.

For McMurray, in Arizona, her three youngest children have an array of special needs that just weren’t being met in a private or public school setting, both of which she tried, she said.

For example, her daughter Alicia, 17, has Kabuki syndrome, a rare disorder that causes developmental delays. In public school, “their expectations were way too low. They would say, ‘Well, what do you want us to do?’ I want you to challenge her. You having her sit at a table, that means she’s shut up, quiet, and out of your way, but you’re a teacher—teach her.”

In private school, the class sizes were low, but her children were still failing tests.

The public dollars, along with the one-on-one attention she is able to provide them as a home-schooling parent, has helped the children blossom, she said.

“I think every parent in the United States of America should have this choice,” McMurray said. At the same time, she added, “it’s not for everybody. You have to be disciplined. You can’t just say, maybe I’ll teach them today but not tomorrow. You have to keep with it.”

But for some parents, home schooling is not an option—and neither is private school, even with a voucher.

Ambert, the Port St. Lucie parent, had a difficult experience with her local district. Her son’s school was not equipped to deal with his behavioral challenges, restraining him so often that he came home from school with bruises and was eventually diagnosed with post-traumatic stress disorder. He is now receiving instruction at home from the public school district.

Ambert is currently trying to decide what the best options are for her son. An expanded voucher program, she said, is not what she needs. What she wants is a public school option that can properly educate children like her son, who have autism but can learn at grade level.

Even if she could find a private school, “who’s not to say they’re not going to kick him out within two weeks? … I just want somewhere that I know that he can’t be asked to leave,” Ambert said.


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The Endrew Decision: A Better Educational Standard for Special Needs Students

 Supreme Court

By Nexsen Pruet

March 22, 2017 will go down as a good day for parents, like me, who have a child in the public education system who has special needs. In a time when many of the exceptional children’s programs in this state and in this country seem to be under constant attack, the Supreme Court has given us some new ammunition in the form of (i) a new and higher standard for the level of education that our children are required to be provided with and (ii) an acknowledgment from the highest judicial figure in the land in a Supreme Court opinion that affirms the presence and importance of the role that parents must play in the formation of their children’s IEP’s [Individualized Education Plan].

In the case of Endrew F. v. Douglas County Schools (March 22, 2016), Chief Justice John Roberts issued a unanimous decision that held that “[t]o meet its substantive obligation under the IDEA [Individuals with Disabilities Education Act], a school must offer an IEP reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” Recognizing that all children with special needs are not the same, the Court bifurcated this standard in part by ruling:

– “For a child fully integrated in a regular classroom, an IEP typically should be ‘reasonably calculated to enable the child to achieve passing marks and advance from grade to grade.'”

– For children for whom advancement from grade to grade is “not a reasonable prospect,” an IEP “must be appropriately ambitious in light of his circumstances.”

The standard adopted by the U.S. Supreme Court in Endrew represents a drastic improvement over the standard advanced by the Douglas County district in the Endrew case, which is also the standard that most other school districts have applied since the implementation of IDEA. Indeed, the standard which the U.S. Supreme Court refused to adopt in Endrew, which was that a school district need only provide an “educational benefit [that is] merely … more than de minimis,” will now hopefully go by the wayside. Chief Justice Roberts certainly disregarded this proposed standard with aplomb when he ruled that “a student offered an educational program providing ‘merely more than de minimis’ progress from year to year can hardly be said to have been offered an education at all. For children with disabilities receiving instruction that aims so low would be tantamount to ‘sitting idly…awaiting the time when they were old enough to ‘drop out.'”

Some facts from the Endrew case help illustrate the importance of this ruling. Endrew is a child who, like my son, was diagnosed with autism at an early age. Endrew attended public school in Douglas County from preschool through fourth grade. Endrew showed numerous strengths and was described as “being a humorous child with a ‘sweet disposition’ who ‘show[ed] concern [] for friends.” Despite these strengths, Endrew also “exhibited multiple behaviors that inhibited his ability to access learning in the classroom” such as screaming in class, climbing over furniture and other students, and running away from school. When Endrew’s parents met with the Douglas County officials for Endrew’s fifth grade IEP meeting, Endrew’s parents were provided with an IEP that was “pretty much the same as his past ones [IEPs]” even though the parents had asked for a “thorough overhaul” of Endrew’s IEP as a result of Endrew’s behavioral problems.

At this point, Endrew’s parent’s removed Endrew from the public schools and enrolled Endrew at Firefly Autism House, a private school. Firefly developed a “behavioral intervention plan” for Endrew “that identified Endrew’s most problematic behavior and set out particular strategies for addressing them.” Firefly also “added heft to Endrew’s academic goals.” With this plan and these strategies in place, Endrew’s behavior improved and he started to make academic progress that he hadn’t been making in public school.

Six months after enrolling at Firefly, Endrew’s parent’s met with Douglas County officials again. Presumably this meeting was held for the purpose of re-enrolling Endrew. In the meeting the Douglas County officials presented another IEP. However, this IEP “did not differ meaningfully” from the plan that Douglas County had presented before even though there was clear evidence that the program implemented by Firefly were working.

With this disappointment in mind, Endrew’s parents filed a complaint seeking reimbursement for Endrew’s tuition at Firefly under the provisions of IDEA. During the course of the litigation, lower court’s acknowledged that the past IEPs “did not reveal immense education growth” but determined that Endrew was not entitled to relief because Endrew’s “IEP objectives were ‘sufficient to show a pattern of, at the least, minimal progress.”

In reaching his decision overruling the lower courts, Chief Justice Roberts undertook a thorough analysis of the United States Supreme Court’s prior ruling in Bd. of Ed. of Hendrick Hudson Central School Dist., Westchester Cty. v. Rowley, 458 US 176. Douglas County argued intensely that the Rowley decision supported the “de minimis” standard that it advanced. However, Justice Roberts disagreed. Justice Roberts stressed that the Court in Rowley actually had “charted a middle path” and limited its decision to just the facts of the case that was before it in Rowley. As such, Chief Justice Robert determined that the Rowley court declined “to establish any one test for determining the adequacy of educational benefits conferred upon all children covered by the Act [IDEA].”

After analyzing and limiting Rowley, Chief Justice Roberts went about setting the new standard that will now be applicable, which, as aforementioned, is that for a school district “[t]o meet its substantive obligation under IDEA, a school must offer an IEP reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” Importantly, Chief Justice Roberts noted the importance of parents playing a role in this new standard when he concluded that this new standard will require a “prospective judgment by school officials” that “will be informed not only by the expertise of school officials, but also by the input of the child’s parents and guardians.” The addition of this language should provide great relief and ammunition to the many parents who feel like they have been frozen out of the IEP process by their districts.

In supporting his standard, Chief Justice Roberts concluded very simply that “[t]he IEP must aim to enable the child to make progress.” After all, Chief Justice Roberts rationalized that “[a] substantive standard not focused on student progress would do little to remedy the pervasive and tragic academic stagnation that prompted Congress to act.”

Interestingly, Chief Justice Roberts seems to have embedded in his opinion two extra warnings to school districts that they should take this new standard seriously and not try to take advantage of it …


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What is an IEP?


You asked to have your child evaluated for special education services. Now it’s time for the IEP meeting, but you’re not sure what to expect. What’s in an IEP? How can you prepare for the meeting?

What is an IEP?

The IEP, Individualized Education Program, is a written document that’s developed for each public school child who is eligible for special education. The IEP is created through a team effort and reviewed at least once a year.

Before an IEP can be written, your child must be eligible for special education. By federal law, a multidisciplinary team must determine that (1) she’s a child with a disability and (2) she requires special education and related services to benefit from the general education program.

The Individuals with Disabilities Education Act (IDEA), a federal law, requires certain information to be included in the IEP but doesn’t specify how the IEP should look. Because states and local school systems may include additional information, forms differ from state to state and may vary between school systems within a state.

IEP team members

The members of the multidisciplinary team who write your child’s IEP include:

  • You, the parents, who have valuable insights and information about his strengths and needs and ideas for enhancing his education
  • General education teacher(s) who can share information about classroom expectations and your child’s performance
  • A special education teacher who has training and experience in educating children with disabilities and in working with other educators to plan accommodations
  • An individual who can interpret the results of your child’s evaluation and use results to help plan an appropriate instructional program
  • A representative of the school system who knows about special education services and has the authority to commit resources
  • Individuals with knowledge or special expertise about your child that are invited by you and/or the school district
  • Representatives from transition services agencies, when such services are being discussed
  • Your child, when appropriate, and whenever transition is discussed


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