Schafer Autism Report July 3, 2003

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[From the National Down Syndrome Society on Bill S. 1248. For our readers’ information. This analysis is not necessarily shared by the Schafer Autism Report. Our purpose is to provide diverse approaches to the IDEA revision process.]

On Wednesday, June 25, 2003, the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously passed its bipartisan IDEA reauthorization bill, S. 1248. [See New York Times coverage following this article. -ed.]

The bill that was passed was an amended version of the one that was introduced two weeks ago. In response to the feedback that the Committee received, some changes were made, most significantly in the discipline provisions.

S. 1248 will go on to a full Senate vote sometime between July 7th and the end of July.

Our goal over the next few weeks will be to discourage any amendments on the Senate floor that would diminish the protections currently in the bill and to encourage amendments in the areas we still have concerns.

v The Senators are going home this weekend until July 6th. Call their local offices to make appointments or find out where they will be making public appearances so you can arrange to go (with your child) to meet them there.

v If a personal visit is not possible, please call, email or fax the Senators your comments on S. 1248. This is particularly important for the Republican Senators.

v When you contact your Senators: 1. Please thank them for the positive provisions in S. 1248, including the most recent changes to the discipline provisions and 2. Then express our top three remaining concerns (this information is provided below).

3. Make sure to use personal stories to illustrate the importance of your points.

1. Option of 3 year IEP is only for ages 18-21 2. Improvements in the transition provisions, including an increased focus on post-high school outcomes.

No option for voluntary binding arbitration 3. An improved version of the resolution session that H.R. 1350 requires before parents can go to a due process hearing 4. A 2 year statute of limitations from time parent should have known about violation (as compared to a 1 year statute of limitations from date of actual violation) Governor does not set rate for attorney’s fees; instead fees continue to be awarded by the courts.

5. A child’s disability must be considered in most disciplinary actions 6. Strengthened enforcement provisions apply if a state is not complying with IDEA.

The grassroots response convinced the Committee that three important requirements from the current IDEA discipline provisions should be added to S.1248 and that a due process issue should be clarified! Thank you to all

requirement for a behavioral assessment, if one has not already been done, was added to the discipline provisions of S.1248. This will help keep the behavior from recurring.

2. The word “knowingly” was put in front of the words “possesses or uses illegal drugs” to conform to current law. The effect of this change is that the school system must look at whether our children understood that they had illegal drugs in their possession before applying the disciplinary procedures. This is a significant protection since the school system would not otherwise have to consider the child’s disability for drug offenses under S. 1248.

3. A parental notification requirement from the current IDEA discipline provisions was added to S. 1248. This notification would inform parents that a disciplinary action is being contemplated for their child and inform them of all the procedural safeguards that apply.

4. It was clarified that a hearing officer can order compliance with the IDEA procedural requirements.

1. The elimination of short term-objectives or benchmarks. Tell the Senators that regular report cards are meaningless for children who have below grade level goals and functional goals. We rely on the periodic reports that are tied to the short-term objectives. The elimination of short-term objectives will create more paper work for teachers who are writing these periodic progress reports because they are going to have to provide a narrative explaining the various steps that have been made toward achieving the annual goal. These steps are essentially short- term objectives or benchmarks. If these progress reports are not done properly there will be litigation to clarify how annual goals are to be measured without short-term objectives or benchmarks.

2. Limitations on the subject matter of a due process hearing. In S. 1248 the subject matter of a due process hearing is limited to the issues raised in the due process complaint notice. This requirement will force parents to figure out everything that could possibly be an issue in the hearing. There is no opportunity to add issues later if they have inadvertently been left out (putting parents without an attorney at a great disadvantage). Tell your Senators that in order to minimize litigation and relieve pressure on parents to hire attorneys early in the process, parents should be able to add an issue without filing a separate due process complaint for that issue. Otherwise parents are going to be heading into the mandatory meeting with the school system and the IEP team (in S. 1248 this is called an “Opportunity to Resolve Complaint” meeting) prepared for an adversarial due process hearing, instead of a collaborative resolution session.

3. Placement while a discipline decision is appealed. Under S. 1248, children who are ordered to alternative educational placements for more than ten days do not have the “stay put” right to remain in their current educational setting while the decision is being appealed. Under current law all children are entitled to “stay put” except in cases involving drugs, weapons and the substantial likelihood of harm to oneself or others. The loss of “stay put” is a huge concern, especially for children with transition problems. Explain to your Senators the amount of regression your child would suffer in the time an appeal might take. This is especially unjust if an appeal determines that the disciplinary action was inappropriate. You should point out the increased risk of litigation if the child needs additional services in order to catch up.

Remember that your voices have made a difference in the development of S. 1248! We need to make sure the Senators continue to hear our appreciation and concerns so they are prepared to protect our children’s rights when S. 1248 goes before the full Senate in July.

On the NDSS Advocacy Center Website, we have a letter prepared that you can sign and send to your own Senators via e-mail. Just click on http://capwiz.com/ndss/issues/alert/?alertid=2705606 and enter your zip code in the box on the right. Then just follow directions.

After 18 months of behind-the-scenes negotiations, a Senate committee today unanimously approved a bill reauthorizing educational services for the United States’ 6.5 million disabled students, assembling a bipartisan stand on issues including discipline of unruly students and a reduction in paperwork.

The swift approval, in a 10-minute session this morning by the Senate Committee on Health, Education, Labor and Pensions, came in sharp contrast to the last reauthorization of the Individuals With Disabilities Education Act, whose passage in 1997 was contentious.

The Senate bill preserves protections in current law for special-education children who misbehave in school, requiring schools to determine whether the misbehavior was related to a disability. If not, the school could send the child to an alternative program during a suspension.

But the Senate bill repeals a current provision that lets a child remain in the original classroom while his family appeals the suspension order. It also shortens the deadline for rendering such a decision to 20 days from 45.

The Senate bill won cautious praise today from advocates for the disabled, who had largely criticized the House bill.

James Wendorf, executive director of the National Center for Learning Disabilities, lauded the committee for “legislation that is bipartisan, balanced and respectful of the complex needs of our nation’s 6.5 million students with disabilities.”

The center praised the bill for easing mechanisms to identify children who need extra help at younger ages. It also commended its steps to help disabled teenagers with the transition to life after high school.

Paul Marchand, a lobbyist for United Cerebral Palsy and The Arc, an organization representing people with developmental disabilities, called the Senate bill a “marked improvement” over the House version, particularly in its protections of disabled children who run afoul of school behavior codes. Under the House bill, schools could suspend or expel children who violate rules, without regard to their disabilities.

Some advocates for the disabled worried, for example, that diabetic children could be thrown out for eating in class, or that autistic children could be punished for behavior they could not always control.

School administrators, however, had praised the House bill for streamlining special education, reducing paperwork, and making it easier to maintain discipline. That bill passed the House on April 30 by a vote of 251 to 171, with 34 Democrats joining Republicans to support it.

Nancy Reder, deputy director of the National Association of State Directors of Special Education, said: “We like what they did with discipline compared to the House bill. We think it represents a fair compromise with the disability community that didn’t want any changes and our members.”

The safeguards about discipline do not apply to disabled children who take guns, drugs or other weapons into schools, who are subject to expulsion and other measures like other students.

With the intention of reducing paperwork, the Senate bill removes current provisions for schools to write short-term goals into the educational plans of disabled children.

Today’s Senate bill left unanswered one major question for every state and special education director and teacher: the amount of money the federal government will contribute to special education. Republicans and Democrats alike say they embrace the goal of fully financing special education by 2009, but Republicans say they would like the federal contribution to be discretionary while the Democrats contend it should be mandatory.

Mary Kusler, a legislative specialist for the American Association of School Administrators, which also supported the House bill, said her group saw the Senate’s effort as “a starting point.”

The association, Ms. Kusler said, was surprised and “incredibly disappointed” that today’s bill did not call for mandatory full financing, or carry an appropriation level, and said that unless the federal contribution was mandatory, it would continue to fall short.

“They’ve demonstrated that even when they set out a goal in the budget, that isn’t binding,” she said.

With the bill headed to the Senate floor, many advocates wondered how a conference committee would reconcile the House and Senate versions of special education’s future.

Senator Judd Gregg, the New Hampshire Republican who is the education committee chairman, said that “the fact that we come to the table with a bill that was reported out of committee with unanimous support puts us in a strong position.”

At first, the complaints weren’t specific enough to cause undue worry: loss of energy, decreased appetite, acne, lowered libido. Managers at the manufacturing plant chalked up the workers’ strange symptoms to their own sloppiness, “natural laziness,” even “mob hysteria.” Certainly, the company assured the public, the benefits of the chemical the workers were handling far outweighed any unproven, ambiguous health concerns.

Thirty years later, Swedish and American laboratory studies indicated a strong link between long-term health problems--including cancer--and the chemical the workers had been exposed to for decades. The chemical the workers at handled at the plant--and many other American plants just like it--was PCB (polychlorinated biphenyl), and its use in any form was banned by the U.S. government in 1976, half a century after it was first commercially produced.

PCBs loom as the kind of environmental horror story activists persist in reminding us about, because PCBs themselves persist, through bioaccumulation--levels of the chemical continue to show up in the body fat of animals and humans as part of what scientists term our “body burden” of toxics.

Environmental activists like to remind us about the horrors of PCBs because, they caution, it could happen again. In fact, they say, it might be happening right now, in Silicon Valley.

Polybrominated diphenyl ether (PBDE) started out as one of those brilliant inventions bound to save lives and make manufacturing easier. PBDEs are part of a family of chemicals called brominated fire retardants. Various forms of these chemicals are added to textiles, household and office appliances and upholstered furniture to inhibit their flammability. Without them, a match dropped on the couch could mean leaping flames instead of slow-moving smoke.

PBDEs are favored for fire prevention because they decompose at high temperatures and release bromine atoms, which interfere with the chemical reactions driving oxygen-dependent fires. Industry groups estimate that, in the case of a fire, flame-retardant treated products can ensure up to 15 times as much escape time as nontreated products.

It wasn’t until recently, however, that scientists realized that PBDEs and other brominated fire retardants were decomposing at much lower temperatures than expected. A 1997 study from the Institute of Environmental Chemistry at the University of Stockholm, Sweden, discovered that flame retardants emit gasses between 86 and 104 degrees Fahrenheit, which is a common temperature inside a PC or TV that is turned on. The gasses are colorless and odorless.

Instead, like PCBs, PBDEs concentrate in lipids, or fat. They are highly resistant to physical, chemical or biological degradation.

In a study published this March, scientists at the California Department of Toxic Substances Control analyzed breast-fat tissue samples taken from women in the Bay Area in the 1960s and the 1990s. They found that there was a “significant increase” in the PBDE body burden of the samples taken in the 1990s--up to 40 to 60 times higher than levels found in Sweden.

If the chemicals stayed put in each human’s body fat, the overall effect, while risky for that person, might not be so grave. But what concerns scientists and activists is that PBDEs have been found to be transferable through breast milk--and even to the tissue of fetuses.

Earlier this year, the European Union banned the use of PBDEs. However, North American industrial use accounted for half the world market in 1999.

The technology industry embraced brominated fire retardants, and what is known as the “Deca” form of PBDE in particular, because it was easily mixed into polymers used in plastic computer housings, printed wiring boards and the insulation surrounding wire and cables and connectors. According to the Collaborative on Health and the Environment, PBDEs can “constitute quite a large percentage of the final product ... up to 30 percent.”

While concern over PBDEs entering the environment through disposal of foam-upholstered furniture has recently been publicized, the fact is that more than 50 percent of industry use of PBDEs has been in the electronics and technology industry, according to the Environment California Research and Policy Center. And while California legislation to phase out certain types of PBDEs recently passed the legislature, spearheaded by Wilma Chan, the manufacturers of brominated fire retardants made sure the bill only regulated the types of PDBEs used in furniture foam and textiles, not the types most common in the electronics industry.

When PCBs were banned, in 1976, it was because they were found to suppress the immune system, alter brain development, lower the IQ and cause behavioral problems like attention deficit and hyperactivity in children.

They were also eventually found to be cancerous agents and to alter sexual development. PBDEs are similar to PCBs in that they have been shown to affect fetal development.

While scientists like to be cautious in interpreting their data, lab research has shown that a body burden of flame retardants at the levels found in Bay Area women has the potential to disrupt the process of brain development in fetuses and infant children (through breast milk). It is tempting to relate this discovery to the increasing levels of autism, ADD and hyperactivity in Silicon Valley, although the causes of these disorders remain elusive.

A Swedish study published in 2001 by Eriksson, Jakobsson and Fredriksson showed that neonatal male mice exposed to even low levels of brominated flame retardants exhibited permanent behavioral changes, including erosion of “habituation capability” (the ability to adjust to environments), learning and memory.

The theory, advanced by yet another Swedish study, is that PBDE institutes these changes by interfering with thyroid hormone function. The chemical compound of PBDE mimics the natural hormone, binding with transthyretin, a protein crucial to normal thyroid hormone function. The thyroid is central to brain development.

There have been no long-term epidemiological studies on the effect of PBDE’s hormone mimicry, but activists such as Ted Smith, executive director of the Silicon Valley Toxics Coalition, urge the maxim “better safe than sorry.”

“We’ve got to take a cautionary approach which says the chemical companies have to prove these chemicals are safe, not wait for the long-term studies.”

Smith says. Some electronics companies that use PBDE are “already beginning to see the writing on the wall,” he says. Hewlett-Packard and Apple have phased out use of PBDEs. “Unfortunately,” Smith counters, “they haven’t phased out use of another flame retardant--TBBPA.”

TBBPA, or tetrabromobisphenol-A, is also chemically similar to PCB, is an endocrine disruptor, has also been found to leak from plastic and has been found in human blood tests to accumulate in the body. It is currently the preferred flame retardant worldwide in the electronics industry. It is not regulated, and there are no plans to regulate it.

Smith, who also heads the Take It Back Campaign to urge companies to accept back used equipment and recycle it properly, would like to see all flame retardants phased out. He says, “Our position is that they’re all pretty bad, and it would be good to get rid of all of them so long as there are alternatives.”

Apple’s Power Mac G4 desktop computer employs a metal chassis that would enclose any combustion, thus eliminating the need for flame retardants in the plastic housing. Hewlett Packard incorporated a metal chassis and power supply enclosure into its OfficeJet 500 printer so it didn’t have to use flame retardants.

It seems like a simple solution: use things that don’t catch on fire anyway, or use things that can contain flames, not chemically douse them.

Yes, great--but PBDEs and other fire retardants are already in the environment, and they’re not going to go away. Without legislation to regulate them, they will continue to accumulate in our bodies and be passed on to our children, and the long-term effects will be finally understood via this global laboratory experiment.

A Model Of Positive Behavioral Support For Individuals With Autism And Their Families: The Family Focus Process

Service providers use several types of service-delivery models to support families of persons with autism. One model, positive behavioral support, has gained increasing attention in the literature. Positive behavioral support is a comprehensive approach used to address challenging behavior and improve broad lifestyle outcomes that serve to increase the overall quality of an individual’s life. This article describes a service-delivery model for individuals with autism and their families that incorporates the philosophy and essential elements of positive behavioral support. A case study is presented to illustrate one family’s experience with the family focus process. Child and family outcomes related to the case study are also described. The key elements of positive behavioral support are discussed in light of providing comprehensive and durable systems of training and supports for families and educators of individuals with autism.

The provision of education and training services for families of children with autism and other special needs has received increasing attention in the literature (Covert, 1995; Dunlap & Fox, 1999; Karp, 1996; Kohler, 1999; McWilliam et al., 1995). Each child with autism is unique and requires a variety of therapies and treatments from several different disciplines. In addition, each family unit is unique and family priorities must be addressed to facilitate involvement in education and training programs. It is frequently acknowledged that parents are the single most important resource for their child and must be an integral part of the service-delivery and planning process (Stroul & Friedman, 1996). Yet, families seeking to become an integral part of the service-delivery process may face many difficulties. A study by Kohler (1999) cited some of the problems and concerns, as reported by families, related to quality service provision for their 3- to 9-year-old children with autism; these concerns included difficulty accessing services, limited involvement in interventions, services that are not effective in meeting the needs of the child or family, and a lack of interagency collaboration.

Strategies to Support Individuals with High-functioning Autism / Asperger’s Syndrome 2 hours college credit

This class will increase your understanding of and your ability to support individuals on the Autism Spectrum who have average to above average ability levels

This course will be available online through the University of Missouri-Columbia Fall semester 2003. Take the classes from your home or school and email assignments to Columbia.

I am pleased to announce that bill A2601/S1855, which will over the next five years provide $15 - $20 million in autism research funding for the NJ Governor’s Council on Autism, passed both houses of the Legislature early this morning. The bill will be signed by the Governor within the next few weeks.

The bill was introduced one year ago and since then, we have been working non-stop to ensure passage. Thanks go to each and every one of you who participated in this process by calling, writing and/or e- mailing your legislators or the legislative leadership and demanding actions.

Individualizing Functional Assessments For Children With Autism: The contribution of perseverative behavior and sensory disturbances to disruptive behavior

A functional assessment interview (O’Neill et al., 1997) was conducted with the care providers of 100 young (2 to 5 years old) children with autism regarding reinforcement contingencies contributing to maintenance of their child’s disruptive behavior. Care providers were interviewed regarding their child’s disruptive behavior related to gaining attention and tangibles and escaping demands. In addition, we individualized the interview in more detail to include the possible relationship between their child’s disruptive behavior and gaining access to perseverative activities, avoiding demands when engaged in perseverative activities, and avoiding specific types of sensory stimulation. Results of the study suggest that gaining access to perseverative activities and escaping demands while engaged in these activities frequently contribute to disruptive behavior in young children with autism. These findings are discussed in terms of assessment considerations and treatment for children with autism and other types of syndromes and disorders. Many young children with autism display challenging behaviors that can interfere with educational and adaptive behavior instruction (see Dawson & Osterling, 1997; Howlin, 1998). Functional assessment is an empirically validated approach for matching individual treatment recommendations to variables that contribute to maintenance of challenging behavior.

One purpose of a functional assessment is to identify environmental conditions in which problem behaviors are most likely and least likely to occur for an individual child (e.g., Iwata, Dorsey, Slifer, Bauman, & Richman, 1994). In this way, the therapist attempts to isolate the function of challenging behavior by identifying reinforcement conringendes contributing to maintenance of the behavior. Based on the results of a functional assessment, treatment components can be selected that focus on modifying the environment and teaching appropriate behaviors that serve the same function as the individual’s challenging behavior (Carr & Durand, 1985).

For example, if an individual engages in aggression to gain caregiver attention, a target for treatment might be to teach the individual to recruit attention through appropriate communication (e.g., Hagopian, Fisher, Thibault Sullivan, Acquisto, & LeBlanc, 1998; Northup et al., 1991). Functions of challenging behaviors that are typically studied in the behavior analytic research literature are positive reinforcement (e.g., gaining access to attention, tangibles, desired activities), negative reinforcement (e.g., escaping nonpreferred situations), and automatic reinforcement (e.g., sensory).

Pricilla Garcia was always tagging along with her severely autistic 11-year-old brother.

When Joshua Garcia played computer games, so did she. When he watched cartoons, so did she. And when he hopped into the family’s backyard pool in Richmond Hill Saturday afternoon, so did she.

Pricilla’s grandmother, Julia Garcia, found the 6-year-old face down in the pool about 20 minutes later. Pricilla died at New York Weill[ Cornell Center in Manhattan early Sunday.

Her father, Victor Garcia, 29, said he watched from behind a window as doctors struggled to revive his child.

“When all eight or 10 of them looked at the clock,” he said, “I knew she was gone.”

An autopsy Monday morning will determine the exact cause of death, a spokeswoman for the chief medical examiner’s office said.

Garcia stood dazed in the front yard. One after another, neighbors and friends came to offer their condolences. Even more offered them by phone. A half-dozen relatives sat on the porch steps, staring vacantly at the street.

A new wooden fence blocked the path to the backyard. Behind it, the above-ground swimming pool sat empty. Muck and grime caked its blue siding.

“I’m basically in a state of shock,” Garcia said, his voice drained after 12 hours of waiting to see whether his daughter would live. “I’m all cried out.”

Leaning back on his red truck, Garcia described his daughter’s death as a freak accident that could have been avoided. It began with the silence.

For the past four years, Garcia, a fledgling real estate investor, has lived with his mother and two children on the bottom floor of a two-story house. Saturday, his mother was taking care of both kids. At 3:15 p.m., the children were playing in the living room as Julia Garcia, 58, prepared lunch.

“When she finally finishes the meal, she notices no one is around,” he said. “She sees the window open.”

Julia Garcia, in a panic, ran out the front door instead of the checking the pool. She called 911. She called her son. She called a cousin in Brentwood.

“Her first reaction was to run up the street this way,” said the cousin, Randy Rodriguez, 30, as he pointed to Jamaica Avenue. “She didn’t see them. So she ran the other way.”

She found Pricilla and pulled her from the bottom of the pool. A firetruck arrived moments later.

Meanwhile, Victor Garcia, who was having an alarm installed in his truck a few blocks away, ran back home after getting his mother’s frantic phone call.

“When I got here, I saw the firetrucks,” he said. “I knew it had to be Pricilla, because she’s only 3 feet tall. She can’t swim.”

Police found Joshua’s clothes in the swimming pool, but he was gone. He turned up naked on Atlantic Avenue later in the afternoon, after streaking out of the pool. Police picked him up.

Yesterday, he was cheerfully playing video games in his living room. His family tried to explain the tragedy. He didn’t understand.

“He’s oblivious to it,” Rodriguez said. “He knows she’s not around. But he can’t comprehend it.”

This is a family that needs our help. Victor and his mother have cared for these children alone. There is no mom in the picture. There is very little money and help is needed for a proper funeral. Please help us to give Pricilla her final rest.

Send a contribution to NYFAC/ The Garcia Family Fund, 95-16 Pitkin Avenue, Ozone Park, NY 11417 (All money collected will go to assist this family exclusively.)

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