Say you want to go up against your school district to ensure a fair and appropriate education for your child who has a disability. The school isn’t providing related services such as speech or physical therapy listed on the IEP (individualized education program). Or your child isn’t receiving modifications and adaptations for testing, or specially designed instruction. There are lots of reasons a parent might file an IDEA lawsuit.

Photo courtesy of methTICALman (flickr.com)

Now say you have to pay for expert witness testimony during a court hearing in order to make your case. Before the 2006 Supreme Court decision, Arlington vs. Murphy, you could recover those fees if you prevailed as part of your costs. But the 6-3 pro-school district decision said, in part, that the term “costs” does not include expert fees. (Read more analysis here.)

As the National Autism Association points out, school districts can pay these expenses using taxpayer dollars while many parents can’t hope to match those resources.  A copy of the bill can be found at www.congress.gov, in the box that says Search Bill Summary and Status by typing “IDEA Fairness”  and then clicking on search.  This will take you to H.R. 2740.

Now click here to sign a petition in support of the bill. Because it’s hard enough having to go to court to fight for your child’s right to an appropriate education. You shouldn’t have to go broke doing so — or decide you can’t afford to go to court in the first place.

You know what I wish? I wish things were a little easier. I wish there were more tax exemptions and credits for special therapies and childcare. Our childcare costs are lower than they used to be, thanks to respite through our Medicaid Waiver, but they’re still higher than those for families with typically developing kids. Alex is almost 11 and can’t be left alone. Ever.

I wish those caring for a family member with an atypical situation were entitled to more paid leave. In a country where people without kids bitch about parental leave and co-workers who take time off to care for sick kids, it’s not going to happen. But I can still dream, can’t I?

When it comes to jury duty, I wish exemptions were easier to get. Reader Bonnie Sayers (see first comment) wrote about her experiences with her local court system in California, which seemed needlessly harsh to me. I am indeed lucky to live in New York, where I’ve gotten about a decade’s worth of deferrals because I’m the sole caretaker of school-age kids.

We all owe it to our community to participate, but the fact is, we can’t all do it all the time. And the system isn’t going to collapse just because one segment of the population cannot sit on a jury for the 10- or 15-year period when their kids require a level of care that’s beyond what most parents of typically developing children provide. I expect to serve on a jury again one day - when Alex has more support and programming for a longer day.

Kathye Schattner, a Kentucky resident, started a website detailing her attempts to get her state legislature to enact more family-friendly jury policies. Check out examples of families who have been affected by harsh rulings - including families who have children with autism.

Brain,Child Magazine ran a piece a few years ago by a Colorado lawyer, Kathy Plonsky, who thoughtfully defended these policies in a piece entitled A Jury of Her Peers. I remember reading this piece and thinking it was well-reasoned, but since then I’ve come to feel it’s an overly literal interpretation of the law. I don’t see why the incident in Plonsky’s own life that infused her with a new empathy for the defendant couldn’t as easily have been recalled five, ten or even 20 years later, rather than a few days. The experience of parenthood is not fleeting - the memories of outstanding parent-child events are usually seared into your brain, not forgotten like a mildly entertaining movie.

Yes, we’re entitled to a jury of our peers, but doesn’t that just mean twelve ordinary commoners instead of one king presiding over your life? Jeff served on a jury, and if you’re looking for a precise peer of an Hispanic drug dealer, he’s probably not the best match.

Our situation is not that different from anyone caring for a family member who has unusual needs - Alzheimer’s, autism, a brand-new baby. They all require an extreme level of care. But some of us will be asked to provide this care for a much longer amount of time.

Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

A constant theme in 2008 was the rebranding of autism, as Orac at Respectful Insolence referred to how the likes of David Kirby have been constantly saying that “autism isn’t autism”—-it’s “mercury poisoning,” “vaccine-aggravated mitochondrial disorder,” “mercury-induced neurological disorder,” etc., etc.

(April being Autism Awareness Month—-does your child know about this—let’s not get into what such “rebranding” would do to the month…….)

The notorious Judge Rotenburg Center in Canton, Massachusetts uses electroshock “treatment” on some its residents, some of whom are autistic. In April, one of its staff was charged with rape, assault, and battery of another staff member—-more about the very, very questionable practices at the JRC is noted here.

Dr. Andrew Wakefield can be said to be the figure who set in motion the claims of a link between the MMR vaccine and autism. He is currently being charged with alleged violations of medical ethics by the General Medical Council in the UK. At a hearing in April, Dr. Wakefield noted that he is “‘perfectly willing to accept [his] understanding was wrong.’”—- Also on the legal front: 2008 saw a version of “vaccine litigation subpoenagate,” with Neurodiversity blogger Kathleen Seidel successfully quashing a subpoena issued to her by vaccine litigation lawyer Clifford Shoemaker, and Dr. Marie McCormick also issued a subpoena.

More about the presidential candidates’ views on autism became apparent, especially those of Barack Obama and Hillary Clinton, and, yes, on vaccines—-and as to why vaccines, and topics like the so-called “autism epidemic,” continue to be discussed, seems to be a sign of at least a little paranoia and politicking……….

Back in August of 2007, University of Georgia mathematics professor Shuzhou Wang was charged with making terroristic threats at Cedar Shoals High School during a parent-teacher conference for one of his children; Wang is the father of two autistic children. As reported in the Athens Banner-Herald, a grand jury did not indict Wang, noting that he did not intend to terrorize anyone:

At least one school official felt threatened by his remarks, according to the indictment prosecutors presented.

Wang “did threaten to commit a crime of violence with the purpose of terrorizing (the official) by threatening to kill people in the county,” the court document states.

The professor and his wife struggle to raise two children with autism, and he was frustrated during the meeting and said things he regretted, according to Wang’s attorney, David Crowe.
“He was trying to nail down their curriculums, to make sure they get what they needed,” Crowe said.

Grand jurors apparently agreed Wang didn’t intend to terrorize anyone with the alleged threats, the attorney said.

“Of course, I can’t really speak for the grand jury, but what Dr. Wang said, in fact, didn’t frighten anybody,” the attorney said.

The conference was tape-recorded, and Crowe said when he listened to the tape, he didn’t hear anyone say they felt threatened by Wang.

The Athens Banner-Herald also notes that Wang was frustrated by “five unfounded reports of possible abuse school officials made within the previous year to the Clarke County Department of Family and Children Services.”

It’s a stark and difficult example of the (understatement) strained relationships that can exist between parents and special educators.

In South Korea, a now-16-year old girl with “mental and developmental diabilities” was sexually abused by her grandfather and three uncles for 7 years. The abuse occurred from August 2001 to May of this year—that means she was 9 years old when it started. According to the December 4th Joong Ang Daily, the girl’s relatives were convicted by the Cheongju District Court on November 20. Judge Oh Jun-keun recently gave a three-year suspended sentence to the 87-year-old grandfather and to two of the uncles, 57 and 42; another uncle, 39, was given an 18-month suspended sentence. According to authorities, the girl’s father is also suspected of incest, but the case was dropped against him because the statute of limitations had expired.

In his ruling, the judge said that he showed leniency because the relatives have “raised the victim despite economic hardship.” From his statement:

“It is inhumane for the accused to have repeatedly violated the young victim, who is their relative, by treating her as a tool to release their sexual desires……..It is necessary to hand down serious punishment taking into account the victim’s grave mental state.”

………..

“Taking into consideration her disabilities, she needs continuous support and help from the accused, who are her family members…….Some of the accused are aged and ill, so it is difficult for them to endure prison life. Therefore, I suspend their prison terms.”

Prosecutors had sought five-years’ terms each for the grandfather and two of the uncles, and a three-year prison term for the third uncle.

Outrage at the judge’s rulings has been immense, with “tens of thousands” of people signing an internet petition calling for the impeachment of Judge Oh. Over16,066 have signed the petition as of this posting; the signature drive is to end on December 15th. I’ve been trying to sign the petition (the online forum it is on is in Korean).

Yes, the crimes and the ruling are making me feel a lot more than queasy.

More about this case at:
• Korea Times
• Brian in in Jeollanam-do
• ICAD
• What Sorts of People
• NTs Are Weird

Florida teacher Wendy Portillo—who allowed her kindergarten class to vote on whether or not their classmate Alex Barton could remain in class—-has been suspended without pay for a year, according to the Naples News.

More commentary at Aspie Web.

Parents in Norwalk (CT) have raised concerns that an autism consultant hired by the school district was not certified as a behavior analyst as she claimed, the November 4th Stamford Advocate reports. Stacy Lore, owner of Carmel, N.Y.-based Spectrum Kids, also allegedly “charged the district for several therapy sessions with their children that never took place.” The Norwalk Board of Education is meeting today in a closed session to discuss these allegations:

Parents filed Freedom of Information requests with the district to get billing information tied to their children’s therapy sessions, which they received, along with evidence the district checked Lore’s credentials and documentation of those credentials.

Special Education Director Janie Friedlander said Lore has not yet provided the district with proof of her certification or degrees. She said a “group decision” would take place as to when the district abandons its pursuit of the information from Lore.

“We are trying to get her cooperation,” Friedlander said. “When we said we would do a thorough investigation, we did mean it.”

Christine Ratcliff, chief operating officer of the Florida-based Behavior Analyst Certification Board, confirmed last month that Lore does not hold a certification from the organization, which is the only group that issues credentials to behavior analysts.

And perhaps—unfortunately—-this kind of misrepresentation of a therapist’s credentials occurs more often than is known?

In Collier County, Florida, parents have accused the school district of having a “carefully orchestrated strategy to keep special needs students out of the district.” Yesterday’s WINK news reports that the Federal Department of Education’s Office of Civil Rights has sent a letter to the Collier School District recommending changes as to how the district informs parents of their rights under the Americans with Disabilities Act (here’s a PDF file of that latter). WINK news describes what happened to teenager Derek Hughes, who was diagnosed with autism and who also started to have seizures while a middle school student in the Collier School District. Then:

“His seizure activity resulted in an ER visit because no one in school was trained properly to deal with a seizure,” his dad, Bill Hughes, told CALL FOR ACTION.

After the seizure, his parents took him to a neurologist at the Dan Marino Center in Miami.

Derek’s neurologist recommended the district change Derek’s IEP to include requiring a full-time trained nurse stationed at the school (the school only had a part-time nurse). It also recommended allowing Derek to bring his service dog to school.

Despite letter… after letter… after letter from the Derek’s family attorney to the district - nothing changed.

Bill Hughes told CALL FOR ACTION, “The district refused to change Derek’s IEP. They refused to acknowledge the epilepsy diagnosis. The district even refused to recognize on Derek’s IEP he had a seizure even at school.

In January 2006, Derek’s dad requested an independent hearing under the American’s with Disabilities Act. Federal law requires the district schedule the hearing within 45 days of the request.

“We sit here two and a half years later and not one single element of our sons’ case has ever been evaluated and ruled on,” said Hughes.

Hughes also complained to the Federal Department of Education Office of Civil Rights.

The Hughes family has also filed a federal lawsuit against the school district; other families have also filed complaints against the district. The Hughes family has relocated to Pennsylvania, where Derek is allowed to have a service dog and a sign language interpreter, with his father commuting from Florida on the weekends.

With the current financial crisis in the US other families and I have been talking (worrying) about what this might mean as far as our school district’s budget and how we can ensure that our children receive an appropriate education right here in our own town. We’ve moved several times for the sake of Charlie’s education—-I think this time we’re planning to stay put and make things as good for Charlie and kids like him as we can.

(Preferably without taking legal action.)

A $3 million civil rights lawsuit has been filed against the Knox County School District concerned the alleged rape of a 14-year-old girl with Asperger’s Syndrome by an alleged sex offender who, according to today’s Knox County News, had been deemed “too dangerous” by his court-appointed guardian to be unsupervised. The 18-year-old boy “was being transported to a sex offender treatment program at Halls High School when the alleged rape occurred.”

According to the lawsuit, bus owner Stanley Rudder had warned Knox County school officials the girl, identified only as Jane Doe in the lawsuit, “would not make it two days” on a special education bus crammed with “rowdy” troubled boys.

His prediction proved correct, with the girl immediately being subjected to sexual harassment on the bus, the lawsuit alleged. Her mother complained to school officials to no avail, Isaacs wrote.

Meanwhile, Knox County Juvenile Court officials were worried about the supervision of an 18-year-old boy who was being transported on the bus to attend sex offender treatment classes at Halls High School, and his guardian warned against leaving the teenager alone with other students, according to the lawsuit.

“The 18-year-old male student was in therapy for a sex crime related matter and has been characterized as a sexual predator,” Isaacs wrote.

The teenager is identified only as John Doe. Police records indicate the teenager’s alleged sexual assault of the autistic girl is under criminal probe, but a spokesman for the Knox County District Attorney’s Office was not immediately available for comment Monday afternoon.

According to the lawsuit, the alleged sexual predator plotted an attack on the girl, taking advantage of her autism and inability to recognize deception.

“In a calculated manner, the male student pretended to have an earpiece that enabled him to communicate with the persons in the other vehicle in order to deceive and frighten the autistic (girl),” the lawsuit stated. “The 18-year-old male student terrified (the girl) into believing that she would be harmed by the persons in the other vehicle if she did not let the male student fondle her and sexually assault and batter her person.”

Why didn’t anyone listen until it was too, too late?