Schools, IEPs and Police

When a student with ASD has behavior issues, both IDEA and the law enforcement system may come into play.

At Autism Spectrum News, Marcia Eckerd and Andrew Feinstein write:

Honig v. Doe held that a school could not expel or change the placement of a disabled student without parental agreement or a court order. In 1997 Congress added a manifestation determination process to the IDEA. If suspension for longer than 10 days or expulsion were to be considered as a consequence for misbehavior, the child’s IEP team needs to meet to determine whether the behavior was a manifestation of the child’s disability. Even for children not identified as eligible for special education, the school district has to hold such a meeting if it had reason to know that the child might have a disability. The IEP Team (including the parents) must review all relevant information to determine if the conduct was caused by or had a direct and substantial relationship to the child's disability, or if the conduct was the direct result of the school's failure to implement the child’s IEP. If so, the child should not be subject to discipline in the same manner as a non-disabled child. For children on the autism spectrum, the expert opinion of a psychologist or psychiatrist is needed to determine if the behavior was a manifestation of the child’s autism. This is critical for parents to understand: in a manifestation determination, parents need a strong and articulate expert.

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By calling the police and referring a child to the juvenile justice system, schools circumvent the manifestation determination requirements. Generally, police, prosecutors and juvenile judges disapprove of these referrals except in the most serious cases of personal injury or property damage. Sometimes, juvenile probation officers are willing to work with the family to press the school to provide needed services for the child, because such services are unavailable to the

court. Parents whose children are arrested need to stress their child’s disability and the obligation of the school to deal with it.

TV Covers the Korea Study

On "The Today Show," Dr. Nancy Snyderman looks prevalence, with the Korea study as a news peg. (Note that she says "incidence" when she means "prevalence.") She also describes Asperger's as a distinct disorder without mentioning the pending change in the DSM.



On The NBC Nightly News, Robert Bazell also mixes up incidence and prevalence.

On CBS, Dr. Jon LaPook makes sense about the need for early diagnosis of HFA:

From KCTV in Kansas City:

KDVR in Denver:

IDEA Funds

The stimulus law provided funds for special education. The latest entries from IDEA Money Watch:

May 13, 2011: Recovery Act spending reports 75% of IDEA Part B funds obligated. According to spending reports made available on the U.S. Department of Education Recovery Act web site, about 75% of the IDEA Part B Recovery Act funds have been obligated as of May 6, 2011. Rates of spending vary across states-from as low as 52% in Wyoming to 100% in Iowa. All IDEA Recovery Act funds must be obligated by Sept. 30, 2011 - just 5 months away. The State-by-State spending report is available here.

April 15, 2011: IDEA Money Watch and the Center for Law and Education submit a FOIA request to USED for LEA-level data on MOE and CEIS for FY2009 required to be submitted by May 1, 2011. See the request here.

April 12, 2011: U.S. Dept. of Education grants waivers to Alabama and New Jersey allowing these states to reduce financial support for special education to local school districts. Oregon's request was denied. The U.S. Dept. of Education has a new web page that details its procedures for considering state requests to reduce financial support to local districts due to economic hardship and lists the states that have made a waiver request, including all documentation and USED response.

California Vaccine Mandate

At The Sacramento Bee, Bruce Maiman looks at California's vaccine mandate:

It's cross-purposes chaos. Every year, school districts find themselves contending with some new regulation passed by lawmakers who impose education cuts that result in reduced staffs.

Additionally, Gov. Arnold Schwarzenegger cut $18 million from immunization programs last fall. So, we've got lawmakers passing health laws while the governor strips millions from agencies charged with executing them?

Even better: To follow up, the state will audit each district to make sure all students are vaccinated. So they're spending money telling us to do something, then taking away the money to do it, then spending more money to see that we did it.

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Last year, more than 12,000 of California's roughly 470,000 kindergartners filed exemption forms for vaccinations – up slightly from the year before.

For some parents, it's a religious conviction, but many parents use the exemptions because they see this law as the government telling them how to raise their kids, or they believe vaccines cause autism.

Rubbish. The study popularizing the autism theory was done by now-discredited British doctor Andrew Wakefield. The British Medical Journal found he'd deliberately falsified data on every patient whose cases formed the basis of his 1998 study. And, it turns out, Wakefield was paid more than $675,000 by a lawyer hoping to sue vaccine makers.

Former MTV star Jenny McCarthy peddled that Wakefield study for years while preaching against vaccinations. More rubbish. Though she wrote a book claiming to have cured her son's autism – which she said was caused by a vaccination – she admitted to Time magazine last year that her son never had autism and was eventually diagnosed with a different disorder.

Maiman errs in describing the Time article. Other sources -- not McCarthy herself -- suggested the possibility of misdiagnosis:

There are dark murmurings from scientists and doctors asking, Was her son ever really autistic? Evan's symptoms — heavy seizures, followed by marked improvement once the seizures were brought under control — are similar to those of Landau-Kleffner syndrome, a rare childhood neurological disorder that can also result in speech impairment and possible long-term neurological damage.

The Los Angeles Times reports some background on the California mandate:

As the summer vacation season nears, measles cases are on the rise in California, driven by unimmunized travelers infected elsewhere who are entering the state, health officials said Friday.

"We see that as worrisome," Dr. Gilberto Chavez, deputy director of the California Department of Public Health, said in an interview.

Those infected with measles include not only unimmunized Californians traveling abroad, but foreign visitors to the state and others who simply came in contact with infected travelers, Chavez said.

Measles is considered eliminated in the Western Hemisphere, with very few cases of illness, but it is a significant problem in Europe, Asia and Africa.

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In other medical news, the disease whooping cough, also known as pertussis, still remains a problem in California. Although levels have fallen from the height of the epidemic last year, the disease still remains at higher rates than normal, health officials said. Between January and mid-April, 733 people were infected with the disease. Last year, there were 9,273 cases, and 10 infants died.

Olmstead and ASD

Housing is a major problem for people on the spectrum. In the Olmstead decision, the US Supreme Court found that the Americans with Disabilities Act requires the placement of mentally disabled patients in "integrated settings" when they are medically cleared for such settings, they themselves express a desire for such settings, and the resources for such a transfer are available. (See the HHS Olmstead page.) At Autism Spectrum News, Sheryl Dicker and Kristina Majewski write:

Using the Olmstead decision, people with disabilities once segregated in institutions have filed lawsuits nationwide to mandate states to provide services and supports in the community. Thus, people with ASD in institutions, including mental hospitals and nursing homes, can use Olmstead to create community-housing supports. In Georgia, for example (the Olmstead state), the state has been compelled to develop housing in the community for 9,000 individuals, pursuant to the October 19, 2010 settlement agreement. According to this agreement, all individuals currently in hospitals will be transferred to community settings by July 2015. Other examples abound in several states. According to a 2003 study of the states’ response to Olmstead, conducted by Ohio’s Developmental Disabilities Council, more than forty states have created “Olmstead specific task forces.” Those task forces have been charged with ensuring that individuals are moved from institutions to community settings by establishing budgets, requesting appropriate funds be made available to provide adequate housing and supportive services, and moving people off waiting lists.

Unfortunately, data collected by the University of Minnesota’s Residential Information System Program, between the years 2005 and 2009, shows that the number of people living in public and private institutions has not declined in many states including New Jersey and New York. The data further reveals that thousands of people in several states are still waiting to receive residential services (118,122 individuals nationwide as of 2009). Recent litigation by the Disability Rights of New Jersey, addresses this concern. A complaint was filed against the NJ Department of Human Services, claiming that the rights of 8,000 individuals with developmental disabilities were violated because they remained on residential waiting lists and were not moved from segregated settings to the community. (In 2003, a similar lawsuit was initiated in Oregon on behalf of 5,000 individuals with developmental disabilities). The NJ case argued that lack of money is not a defense for the state because civil liberties are independent of state funds, and indeed, it costs double to care for individuals in an institutional rather than a community setting. It is interesting to note that in Olmstead, the plaintiffs reported a cost $283/day to care for an individual in an institutional hospital as compared to $112/day for community services.

Police Encounters with ASD

Previous posts have dealt with the unique problems that crop up when police officers encounter people on the spectrum. Doug Wylie writes at Police One:

The light bars are flashing. There is a cacophony of voices. The responding officers are putting hands on a resistant subject. All hell breaks loose. This could be about any call a cop encounters, but when the call involves a person who has an Autism Spectrum Disorder (ASD), the events itself and its aftermath can get even more difficult for everyone concerned.

“You want to really pay attention to the behaviors,” of persons exhibiting sings of being on the autism spectrum, Susan Hamre recently told me during a videotaped interview that will appear in coming weeks on PoliceOne. Frequent readers of this space will recall that Susan is a friend of PoliceOne — and a friend of police officers — who speaks frequently on the subject of police contacts with ASD subjects. Among the things that Susan reinforced during our discussion at ILEETA 2011 in Wheeling last month, was the fact that ASD subjects tend to react very differently — and sometimes unpredictably — to outside stimuli such as lights and sounds and physical contact. Those light bars, that din of voices, and that hands-on contact are very different for an ASD person than someone who might be considered to be neurotypical.

WJBK in Livonia, Michigan, reports on one example:

Eleven-year-old Victor Sleta was a handful for Livonia Police. They caught up with him after he bolted from Riley Elementary School on May second.

Victor is autistic. His mother got police video through a freedom of information request. You can see some of it by watching Bill Gallagher's video report.

When police spotted him, he ran away. They caught and subdued him.

"They pushed me in the ground and handcuffed me," said Victor Sleta. "There were three police cars against one child."

Victor's mother said the police treatment of her son was excessive and he spent 50 minutes in a scout car.

"He felt like an animal being tapped," said Yuiliya Sleta. "As you can see from the video ... he experienced extreme shock, anxiety attack."

The police report indicates staff at the school told officers they did not believe Victor had taken his medications the day of the incident. His mother insists he did.

Victor's mother questioned police preparation for situations like this.

"I think they (are) not prepared for cases like that at all," she said. "They require special training."

Livonia Mom Says Police Had Problems Handeling Autistic Boy: MyFoxDETROIT.com

President's Committee for People with Intellectual Disabilities

Previous posts have mentioned the National Council on Disability. It is not the only federal advisory body dealing with autism. The president announced appointees to the President's Committee for People with Intellectual Disabilities:

• James T. Brett, Chair,
• Peter V. Berns,
• Clay Boatright,
• Micki Edelsohn,
• Ann Hardiman,
• Alison A. Hillman de Velásquez,
• Carl M. La Mell,
• Annette McKenzie Anderson,
• Carol Quirk,
• Susana Ramirez,
• Deborah M. Spitalnik,
• Lillian Sugarman,
• Liz Weintraub,
• Carol Wheeler,
• Sheryl White-Scott,

These members have an autism connection:

• Clay Boatright is the President of the Board of Directors for The Arc of Texas, a non-profit organization which creates opportunities for people with intellectual and developmental disabilities to be included in their communities and to make the necessary decisions on issues that affect their lives. In addition, Mr. Boatright serves on the Easter Seals North Texas Autism Advisory Board, the Mosaic-Dallas Business Advisory Committee, the Childrenfirst! Collin County Coalition, and the Long Term Care subcommittee of the Texas Taskforce for Children with Special Needs. Previously he served as Board President for The Arc of Dallas and campus chair for the Special and Gifted Education committee in the Plano Independent School District. Mr. Boatright is employed as a Vice President with the Dean Foods Company in Dallas, and has previously worked with The Coca-Cola Company, Ralston Purina, and Maybelline. Mr. Boatright is a father of three children, including identical twins with intellectual disabilities and autism. He holds a B.A. in Communications and M.S. in Marketing from the University of Memphis.
• Carl M. La Mell is the President and CEO of Clearbrook, a service provider for individuals with developmental disabilities in Illinois. Previously, Mr. La Mell held senior positions at Victor C. Neumann Association as Chief Financial Officer, Associate Executive Director, and CEO. Most recently, he chaired the Finance Committee of the Illinois Statewide Early Intervention Task Force. Mr. La Mell is also a member of the Illinois Association of Rehabilitation Facilities, the Illinois Department of Human Services State Task Force on Autism, and the American Association of Intellectual and Developmental Disabilities. He is the past recipient of various distinguished awards, including the Executive of the Year Award from the Illinois Association of Rehabilitation Facilities, the Community Leader of the Year Award given by the City of Rolling Meadows, and the Claude D. Pepper Distinguished Service Award. Mr. La Mell holds a B.S. from DePaul University

Alternative Medicine and Data

The Los Angeles Times is carrying a Baltimore Sun story stemming from the Geier case. (The Maryland Board of Physicians declined to reinstate his license today.)

Families participating in a database at the Kennedy Krieger Institute in Baltimore — the largest autism database in the world — report using 381 different treatments. On average, families use five treatments simultaneously and spend $500 a month on them. A few use dozens, and the record is 56.

The problem, autism experts say, is that mainstream medicine has been very slow to identify the causes of autism and to identify effective medical or behavioral therapies. Among those now regarded as supported by randomized, controlled scientific studies are the Applied Behavior Analysis and Early Achievements Program used at Kennedy Krieger; certain speech, language and occupational therapies, and melatonin therapy.

"There is sort of an old adage in medicine that says: 'When there are no good treatments for a disorder, or a disease, there's a proliferation of treatments,'" said Dr. Paul Law, director of Kennedy Krieger's Interactive Autism Network and the father of an 18-year-old with autism. The database has more than 38,000 participants from all 50 states.

Law said it's "impractical and probably wrong to tell families not to do anything that's not evidence-based. But it is important to encourage families to have a rational approach to the things they try … so you don't wind up on 20-some interventions."

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Law said data from the IAN project is helping researchers identify the most widely used non-evidence-based therapies so they can be subjected to scientific testing. Those proven to be effective can then be promoted, while parents can stop wasting time and money on those shown to be ineffective or dangerous.

But unlike childhood cancer, in which 95 percent of the patients are enrolled in studies, Law said, only 10 percent of children with autism are registered with IAN or are part of research studies.

"That's really not very good at all," he said. And it's not because it's a rare disorder. Incidence studies have continually increased estimates of autism's frequency in the population.

"Because of the complexity of the disorder, we need everybody to be engaged in finding the answers," Law said. "We all need to come together and support the research process, or we'll never have the answer, or it will take much longer."

The Cost to Families

Previous posts have dealt with the cost of autism. There are some new data, as Steven Reinberg reports at HealthDay:

Autism takes a grim economic toll on families, resulting in substantial underemployment and lost income among mothers, University of Pennsylvania researchers find.

This means that health care costs for a child with autism, however high, are only part of the equation, and the labor market squeeze on families should be considered whenever policymakers fund autism care, researchers suggest.

"Mothers are taking lower-paying, more flexible jobs, so that they can spend more time taking care of their autistic children," said researcher David S. Mandell, an associate professor of mental health services research in psychiatry.

This occurs more in families that include children with autism spectrum disorders than in families with children who have other health problems, he said.

"It is not because autism is more impairing to the child than some of those other health limitations, but the system that cares for children with autism is so fragmented it requires mothers to act as case managers for their children in a way that doesn't happen with children with other disorders," Mandell said.

Mothers of children with autism spectrum disorders spend considerable time serving as advocates with both the health care system and schools to get the care and attention their child needs, he explained.

The findings of the study were scheduled to be presented Wednesday at the International Meeting for Autism Research in San Diego

How Headlines Mislead

Headlines, including those on the Internet, can sometimes mislead readers about the content of the article. Consider some of the reporting on the Korean study showing a prevalence of 1 in 38.

From The Detroit Free Press:
This headline suggests that there is much more autism in Korea than in the United States. But the study says no such thing. As the AP report notes accurately, the study found a higher prevalence in Korea than previous estimates suggested, and that a similar study in the United States might reach a similar result.

From KWGN, Denver:

Here, the headline might lead a reader to think that true rates are increasing. They might be, but -- again -- the study says something different. The content of the article is more accurate:

“There's a lot more people in America and around the world that have autism then what we previously thought,” says Betty Lehman, executive director of the Autism Society of Colorado.

An extensive new study looks at a wide range of kids. Experts say casting a wider net and looking at mainstream kids, not just children in special education programs could raise the statistics here in the U.S.

A Boston TV Report on the Vaccine Controversy

WFXT in Boston reports on a new chapter in the vaccine controversy:

Group claims link between Autism and vaccines: MyFoxBOSTON.com

Educational Placement in New Jersey

Inclusion is a major issue in the education of ASD students. The Press of Atlantic City reports:

The number of students in New Jersey public schools diagnosed with autism has almost doubled in the past five years, to more than 13,000 in 2010. More of these children are now being educated in their hometown schools.

But as their number has grown, so has the debate about how and where to best educate children with autism.

A review of special education placement data by The Press of Atlantic City shows the percentage of autistic students ages 6 to 21 sent to specialized schools dropped from 40 percent in 2005 to 28 percent in 2010.

While advocates and experts support keeping the children in their hometown districts, they say many schools are still not equipped to offer the specialized programs autistic children need to learn to interact with others.

“A high number of students are still going to out-of-district placements,” said Diana Autin, co-director of the Statewide Parent Advocacy Network, or SPAN. “And even if they are kept in district, they are often placed in programs that are still very segregated.”

About one in four autistic students spends most of the school day in a regular class, Department of Education data show, an improvement from 2005 when the ratio was less than one in five. But almost half are spending at least half of their day in a separate special education class.

A 2010 report in the International Journal of Special Education indicates that autistic students placed in regular classrooms performed better academically than those placed in special programs. But research on the issue is new and limited, and advocates warn there is no one-size-fits-all placement.

From: Jennifer A. Kurth and Ann M. Mastergeorge, " Academic And Cognitive Profiles Of Students With Autism: Implications For Classroom Practice And Placement," International Journal of Special Education 25 (Number 2, 2010):

In all academic areas, students with autism who had received all of their math and language arts instruction in general education outperformed those students who had received their instruction in special education settings in skill areas that are traditionally difficult for students with autism (abstract skills). These findings suggest that inclusion is academically beneficial to students with autism in this sample. The small sample size and geographically limited nature of the present study preclude broad generalizations; more research is thus warranted with larger sample sizes in more diverse areas.

Korea: One in 38

Previous posts have dealt with the question of prevalence: just how much autism is there? The New York Times reports:

An ambitious six-year effort to gauge the rate of childhood autism in a middle-class South Korean city has yielded a figure that stunned experts and is likely to influence the way the disorder’s prevalence is measured around the world, scientists reported on Monday.

But experts said the findings did not mean that the actual numbers of children with autism were rising, simply that the study was more comprehensive than previous ones.

“This is a very impressive study,” said Lisa Croen, director of the autism research program at Kaiser-Permanente Northern California, who was not connected with the new report. “They did a careful job and in a part of the world where autism has not been well documented in the past.”

For the study, which is being published in The American Journal of Psychiatry, researchers from the Yale Child Study Center, George Washington University and other leading institutions sought to screen every child aged 7 to 12 in Ilsan, a community of 488,590, about the size of Staten Island.

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“From the get-go we had the feeling that we would find a higher prevalence than other studies because we were looking at an understudied population: children in regular schools,” said the lead researcher, Dr. Young-Shin Kim, a child psychiatrist and epidemiologist at the Yale Child Study Center.

South Korea was chosen not only because autism prevalence had not been measured there, but also because its national health care system, universal education and homogeneous population made it a promising region for a planned series of studies that will also look at genetic and environmental factors in autism.

The study, which was largely financed by the research and advocacy group Autism Speaks, raises the question of whether a similarly high prevalence would be found in the United States if all children were screened.

From the AP report:

A study in South Korea suggests about 1 in 38 children have traits of autism, higher than a previous U.S. estimate of 1 in 100. By casting a wider net and looking closely at mainstream children, the researchers expected to find a higher rate of autism characteristics. But they were surprised at how high the rate was. They don't think South Korea has more children with autism than the United States, but instead that autism often goes undiagnosed in many nations. U.S. estimates are based on education and medical records, not the more time-consuming survey conducted in South Korea.

Two-thirds of the children with autism traits in the study were in the mainstream school population, hadn't been diagnosed before and weren't getting any special services. Many of those undiagnosed children likely have mild social impairments, rather than more severe autism.