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The Special Ed Advocate Newsletter
January 26, 2000

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Issue - 58

ISSN: 1538-3202


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1. Update On IDEA Compliance Report (January 25, 2000)

On January 25, 2000, the National Council on Disability released "Back to School on Civil Rights: Advancing the Federal Commitment to Leave No Child Behind."

This long awaited report is a analysis of data on enforcement and compliance with the Individuals With Disabilities Education Act.

Although the full report is not yet available online, NCD issued a summary of their findings. You can download the NCD summary of findings at the Wrightslaw site.

NCD knows that parents must fight on behalf of their children with disabilities. The report begins with this story:

" . . . the parents of a 10 year old from the state of Maryland were told that 'IDEA didnít apply to this child.' Here is a young child that has suffered multiple strokes. She uses an electric wheelchair, assistive technology to communicate; needs assistance to get her through her day at school and IDEA does not apply? Yet, these parents have to fight the battle to get the supports needed for their daughter to become a productive citizen as she works towards her educational goals."

IMPACT ON CHILDREN AND FAMILIES 

"The findings of the NCD report are disturbing . . . children with disabilities continue to be denied their civil rights under the federal law, IDEA."

"Not only have parents of children with disabilities lost the education for their children, but in many cases, due to undue stress and the time and money invested in legal battles, they have also lost their homes, jobs, and often the family structure."

". . . enforcement of the law is the burden of parents who too often must invoke formal complaint procedure and due process hearings, including expensive and time-consuming litigation, to obtain the appropriate services and supports that their children are entitled under the law."

"Many parents with limited resources are unable to challenge violations successfully when they occur."

"Even parents with significant resources are hard-pressed to prevail over state education agencies (SEA) and local education agencies (LEA) when they, or their publicly financed attorneys choose to be resistant."

HIGHLIGHTS

"Every State was out of compliance with IDEA requirements to some degree; in the sampling of states studied, noncompliance persisted over many years."

The U. S. Department of Education consistently fails to impose sanctions on states that refuse to comply with the law. Sanctions include withholding of funds and referring to the Department of Justice for legal action.

"Because the 'Department of Education has not made known to the states and the public any objective criteria for using enforcement sanctions . . . the relationship between finding of noncompliance . . . and a decision to apply sanctions is not clear.'"

QUESTIONS

"Who is responsible for enforcing the law?"

"Who is on the side of the parents and students?"

"Who is listening to their cries for assistance?"

FINDINGS

NCD examined seven areas: (1) general supervision (2) transition services; (3) requirement to provide a free appropriate public education; (4) compliance with procedural safeguards; (5) placement in least restrictive environment; (6) IEPs; (7) protection in evaluation.

Most states failed to meet compliance standards in these areas.

TEACHERS CAUGHT IN THE MIDDLE

"Teachers ultimately bear the responsibility to implement interventions and accommodations for students with disabilities, often without adequate training, planning time, or assistance."

"Regular and special education teachers in many states are frustrated by the mixed messages regarding compliance from school administrators, local special education directors, state oversight agents, school district attorneys, and federal oversight agents."

"They must function within an educational system that often lacks adequate commitment, expertise, or funding to deliver appropriate services to every child who needs them."

"School administrators, special education directors, school principals, and agents of federal, state, and local governments must . . . [work] together to resolve, not conceal or ignore, these very real problems."

INCREASE LEGAL & ADVOCACY SERVICES

NCD made several recommendations:

Ten percent of any increase in federal IDEA spending would be used "to fund free or low-cost legal advocacy services to students with disabilities and their parents through public and private legal service providers. . . beginning to level the playing field between them and their local school districts."

" . . . a lawyer at every state Parent Training and Information (PTI) Center, protection and advocacy agency, legal services, and independent living center to provide legal advice and representation to students with disabilities and their parents in advocating for their legal rights under IDEA."

"Self-advocacy training programs for students with disabilities and their parents focused on civil rights awareness, education and secondary transition services planning, and independent living in the community."

" . . . a national backup center with legal materials, training, and other supports available for attorneys working on IDEA cases and issues at the state level."

"Expansion of involvement by the private bar and legal services organizations in providing legal advice to students with disabilities and their parents in advocating for their legal rights under IDEA."

For an easy to read, printer-friendly copy of "Back to School on Civil Rights: The Federal Commitment to Leave No Child Behind"


2. Wrightslaw: Special Education Law: Update on The Free Book Offer & New Reviews

WRIGHTSLAW: SPECIAL EDUCATION LAW contains the full text of the Individuals with Disabilities Act of 1997 and implementing regulations, Section 504 of the Rehabilitation Act, FERPA, and landmark special education decisions by the U.S. Supreme Court. (published November, 1999).

"THE FREE BOOK OFFER"

Last week, we sent out a Special Offer for people who order WRIGHTSLAW: SPECIAL EDUCATION LAW through their local, retail, over-the-counter  bookstores.

Several people wrote about problems ordering the book from their local bookstore. Watch your mailbox. We'll send out an Update about this Special Offer within the next couple of days.

NEW REVIEWS

What are people saying about WRIGHTSLAW: SPECIAL EDUCATION LAW? Find out at


3. Controversy & "Autism Alert"

On Friday, January 21, we sent out an "Alert" to newsletter subscribers about new developments in the treatment of autism.

We were inundated with emails from readers who (1) thanked us for providing this information; and (2) disagreed strongly with our decision to provide this information.

Here is a sample of emails received during the first 24 hours and our responses.

Email: "We can only hope that this is actually a miraculous [albeit resulting from careful observations and much study] recovery path for some persons with Autism and the spectrum and possibly other related disorders. Thank you for sharing."

Email: "We will continue our hope with interest toward this new study and its results. I know it was a difficult and agonizing decision for you in publishing because of the inherent possibilities - extremely good news or idiosyncratic for one boy's physiology. We hope, and those who hope in this area are already used to having an underlying skepticism although they do want to hear and get excited."

Email: "Once again, thank you for making us aware of the "latest", and TRUSTING that we're intelligent enough to make our own cautious conclusions. Keep the info rolling!"

Email: "Please cancel my newsletter. I am surprised by this complete lapse in good judgment about the "newest cure" for Autism. The message you send to parents who are confused, angry (and mostly in denial) is a false sense of hope with a $50,000 tab. When these new and desperate parents do the only thing they think is right, they sell their houses and go into massive debt."

REPLY: "I don't agree. Denial is a normal part of the grieving process. With help from qualified professionals, parents can move on to getting help for the child."

"Yes, I have seen parents spend $50,000 on therapy, specifically Lovaas ABA type and seen remarkable changes with the child. (This is a different issue -- ABA therapy is one on one, six hrs a day, 7 days a week, up to 2 years. I have seen children make incredible progress after absolute stagnation in "center based" public school baby sitting programs.)"

Email: "More than the financial aspect is the medical experimentation with innocent children. You have no empirical proof that these treatments have the outcomes you so emotionally claim."

"No one knows what will happen when you expose these children to these vitamin treatments, gamma globulin injections, living on water and potato milk???? What about the high fevers and vomiting during IBIG? I appreciated your newsletters until this grand assumption."

REPLY: "Our job is to provide information, not act as censors. We made no claims, but passed on Dr. Megson's research. Read our newsletter again, then download and read her article. After you read her article, let me know your thoughts."

"In every newsletter, whether its about the child who was forced by school officials to eat his own vomit, or something less bizarre, we get criticism from both sides. Some parents express anger that we do not expose more of these dastardly deeds. Some school officials express anger because we don't expose the parents' damage to their own children. We've concluded that this is a normal part of the debate."

Email: "I sincerely hope you read this and reexamine your decision to promote this crime, or may God have mercy on your soul."

REPLY: "We want to provide information, not promote or criticize. As yet, we don't know if Dr. Megson's research will be replicated. Until independent researchers replicate it, it will remain promising but unproven."

"Obviously, you feel strongly about this. Do you feel strongly enough to write a well reasoned article that we can post on our website, presenting another thought /view? Will your email be the end of it? I encourage you to write an article. We will help with the editing after the first draft if you wish."

Email: "I saw the abstract about this study yesterday on the FEAT list. I thought that it was so intriguing that I forwarded the article to my brother, an endocrinologist in Houston. He knew about this study. Dr. Megson cited his recently published article in the New England Journal of Medicine. He suggested that we contact the doctor and find out if Sam is eligible to participate in the study. I don't know if we will. Thanks."

REPLY: "Since the Alert, we received messages from parents whose children were involved in Dr. Megson's study. Some parents reported significant improvements in their children, other parents did not report these improvements."

"We received many emails from people who expressed concerns about the dramatic increase in the numbers of children diagnosed with autism over the past decade."

"We did have misgivings about posting this information. But for many children, the onset of autistic symptoms comes soon after the children received "live virus" vaccinations."

For those who missed click this - "Alert," Dr. Megson's Abstract

If you have an interest in this area, we suggest that you subscribe to the free Internet news service sponsored by Families for Effective Treatment of Autism (FEAT).

FEAT NEWSLETTER 

The FEAT newsletter includes news articles and research about various neurological conditions and disorders. Here is a sample of articles during the past week:

* "LIFE IN THE WOMB: The Origin of Health and Disease"

* "Learning How They Learn"

* "Behavioral Therapy May Help Childhood Sleep Disorders"

* "Autism- Vaccine - Mercury Connection?"

* "Treatment of Co-morbid Disorders in Autism -- Which Regimes Are Effective and For Whom?"

* "'Facing Autism' Gives Parents Reason To Hope / Positive Discipline A-Z"

* "New Medical School Curriculum: Alternative or Complementary? / Polio Vax Change"

* "Scientific American on Autism / More on the Autism-Mercury-Vaccine Connection"

For more information about FEAT, go to

http://www.feat.org/

============

4. EDITOR'S CHOICE FROM THE BOOKSTORE

* * AUTISM * *

Let Me Hear Your Voice by Catherine Maurice. A classic. 

. . . the story of a mother's trials and triumph. Faced with losing her daughter, Maurice did what I imagine we all hope we can do when tragedy moves from nightmare to reality. She denied, cried, raged, read and finally took action. Then, when the worst was over, she made sense of an awful experience by writing about it so that others could understand . . ." 

* * ASPERGER'S SYNDROME * *

Asperger's Syndrome: A Guide for Parents and Professionals by Tony Attwood and Lorna Wing. (1997). Good, easy-to-read book about Asperger's Syndrome, written for clinicians, parents, educators.

* * LANGUAGE DISABILITIES * *

Words Fail Me: How Language Works and What Happens When It Doesn't by Priscilla Vail. In "Words Fail Me," Priscilla Vail explores the links between reading, writing, listening and speaking, how these skills are learned, and what happens in the process breaks down.

* * SPEECH LANGUAGE PROBLEMS * *

Childhood Speech, Language, and Listening Problems: What Every Parent Should Know by Patricia McAleer Hamaguchi, John Wiley & Sons (1995)

"She explains the kinds of tests and what the results mean. She defines each type of disability . . . She talks about how the child is affected, recommended therapy, and what parents can do to help. After reading this book, I had a clear picture of what was going on and what path I needed to take.

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