"Healing Autism: No Finer a Cause on the Planet" ______________________________________________________

SPECIAL EDUCATION

* House and Senate Pass Education Bill - What Does This Mean

for Autism?

* Washington Post Reporter Discovers Façade of Special Education

Commentary

RESEARCH

* ASA Efforts Gain $2.5 Million For Autism Research

AWARENESS

* Hope Amid The Distress Of Autism - Letter

* Request For Advocate Articles

House and Senate Pass Education Bill - What Does This Mean for Autism?

• Discipline Amendment Quashed

• IDEA Funding Increased, But Not Fully Funded

The U.S. Congress gave final approval recently to education legislation that would set new standards for accountability at the state level and ensure more help for needy students and low-performing schools. The bill (H.R.1) authorized $26.5 billion in federal spending on elementary and secondary education for fiscal year 2002, $4 billion more than President Bush requested and $8 billion more than last year’s spending level. Congress is expected to provide roughly $22 of the $26.5 billion amount that was authorized.

H.R.1, also known as the No Child Left Behind Act of 2001, is an updated version of the 1965 Elementary and Secondary Education Act (ESEA). The bill, which passed by large margins in both the House and the Senate, is expected to be signed by the President. While the bill primarily addresses the issue of accountability in schools and help for needy students, elements of the bill and discussion on the Hill also touched on issues related to autism and the disability community.

Discipline Amendment Quashed

When the House passed H.R.1 on December 17, amendments by Senator Jeff Sessions and Representative Charlie Norwood were omitted. An effort to toughen discipline for special education students in public schools failed, but we expect the issue to reappear next year during the debate on the Individuals with Disabilities Education Act (IDEA). Senate conferees in both cases killed the Sessions and Norwood amendments in conference committee.

The amendments would have eliminated the provision that schools had to provide education in an alternative setting for those children who had been removed from the mainstream for discipline reasons. The discipline issue has been of great concern to the ASA and the autism community because of its potential implications regarding behavioral problems of some children with autism.

“While ASA certainly supports discipline in the classroom, we are concerned that a lack of sufficient training in the awareness of the needs of children with autism and how to deal with them. That lack of training poses too great a potential for children with autism to be categorized as discipline problems when they are not,” Robert Beck, executive director of the ASA, said. “In addition, if a child with autism was removed from the classroom, an appropriate, alternative educational setting must be found for them.”

IDEA Funding Increased, But Not Fully Funded

Another issue that was hotly debated was IDEA funding. One of the amendments under consideration was mandatory full federal funding of IDEA that would have required the federal government to reimburse schools 40 percent for special education programs, as stated by law.

During the House-Senate conference on the bill, Senator Tom Harkin (D-IA), who has been a strong proponent of fully funding IDEA, offered a modified amendment that would have put off any spending increases until 2003 or until after the reauthorization of IDEA. However, House conferees rejected Sen. Harkin's proposal and full funding of IDEA is not included in the final version of HR 1.

Despite the lack of consensus on the full funding amendment, conferees did provide an increase of $2.7 billion from the $5.0 billion provided two years ago – a $375 million increase over the Bush budget. Over a two-year period, the funds will raise the federal share toward special education costs from 12 to 18 percent.

“ASA, although disappointed with the decision on full funding, will continue to advocate, along with the Consortium for Citizens with Disabilities, to fully fund IDEA during the reauthorization next year,” ASA President Lee Grossman said.

“We at ASA appreciate the efforts of several members of Congress to make good on the promise to schools for the funding of special education programs,” Grossman added. “We are proud of Sen. Jim Jeffords

* * *

COMENTARY

By Jay Mathews, Washington Post

Washington Post Reporter Discovers Façade of Special Education Looks for Spec Ed success stories from readers

[Washington Post staff writer Jay Mathews' article, When Special Education Falls Short, December 11, 2001, recounts special education failures of students in the Washington DC area. He is incredulous about the shortchanging of students and the wasting of their time and our tax dollars. He cites some typical (and heartbreaking) examples.

[Here is the Washington Post's bio on Matthews that accompanies the

article: "Jay Mathews, a Washington Post education reporter, writes a weekly Class Struggle column exclusively for washingtonpost.com. He also covers school issues in a quarterly column for The Post Magazine." With that background, he's now just discovering the wasteful disaster much of special education is? (Some exceptions noted.) Unless things have changed in the last couple of years, special education teachers are generally given no training on autism in their course work to get licensed. Special education teachers do make up a substantial percentage of the attendees at autism conferences, however, in attempts to catch up.

Journalists, particularly me, have done a terrible job telling this story. Special education systems are often too confusing, too bureaucratic and too bound by privacy rules to yield much useful information. So I am hoping that people with firsthand experience […] will tell me more. The available research suggests that the special education system has led to widespread, if well-intended, misuse of tax dollars and has failed to help kids […]

You have to feel badly for the educators involved. They have limited time and money. They have to decide where to place children even when none of the options are good. Three special education critics who come from very different political backgrounds--Chester E. Finn Jr., Andrew J. Rotherham and Charles R. Hokanson Jr.--say in a new report, "Rethinking Special Education for a New Century" that "many teachers and principals find that special education is their only source of help for individual children who need extra attention and the only remedy for classrooms plagued by disruptive youngsters."

Special education at this point in its history resembles 18th century medicine. Its practitioners are smart, good-hearted people, who have studied hard and are doing their best. But their results are not impressive and many potential clients thus avoid them. They say they need more money, and that is certainly true, but they leave much doubt that they would know how best to use it if they got it.

So help me understand. Tell me your stories. mathewsj@washpost.com. If you know of a family or a special education professional who has had a success, I want the details. I haven't given up on public schools finding a way to help children who are not making progress[…]

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ASA Efforts Gain $2.5 Million For Autism Research

The ASA is excited to report that the U.S. Congress has set aside an additional $2.5 million for epidemiology research at the Centers for Disease Control and Prevention (CDC). This is great news for the autism community and indicates a continued willingness to address autism issues in Congress. It is also a compliment to the efforts of so many ASA chapters and parents.

The House and Senate this week passed the conference report for the Labor, Health and Human Services, and Education Appropriations bill that included $2.5 million above the president's request.

“We now expect the CDC to spend a total of $5.3 million in FY 2002 on autism,” Robert Beck, executive director of the ASA, said. “This amount is the result of ASA’s efforts and the leadership of several Members of Congress, including Reps. Chris Smith (R-NJ), Mike Doyle (D-PA), and Dave Weldon (R-FL). The ASA has been working hard to show support for the importance of collecting epidemiology data was well received on Capitol Hill.”

The ASA membership should be proud of its accomplishments in raising awareness on this issue in the 107th Congress. These funds will allow CDC to continue collecting data in additional states and brings the total amount of funding over the last three years to more than $11 million.

The ASA anticipates that this momentum will continue in the next session of Congress, and we look forward to reporting similar good news in the future.

* * *

Hope Amid The Distress Of Autism

Sir, Over the last few weeks The Times has conducted an exemplary campaign on behalf of those with autism and Asperger’s syndrome, and I would like to thank everyone involved for the paper’s thoughtful and sensitive coverage.

Your readers, who are responding generously to the appeal, may like a small illustration of what their money has the potential to change.

A year or so ago I officially opened a house which provides accommodation and full-time care for seven autistic adults with severely challenging behaviour. Because of my visit one resident’s mother, who normally came on a Friday and took her son home for the weekend, had come on a weekday instead. Naturally she had to leave for home without him, and I shall not easily forget the sound of an uncomprehending and deeply distressed 45-year-old man sobbing and calling for his mother.

I vowed then to do everything possible to ensure that no one with autism need ever again grow up to face such unhappiness, and the funds from the Christmas appeal will help to provide the early intervention and support that can do just that.

You have rightly refrained from sensationalism and concentrated on the facts and effects of this complex and often puzzling disorder, but there are times when it is impossible to avoid emotion. When I visit the schools and units where children with autism and Asperger’s are being given the kind of structured, patient support that will change their lives, the thought that there are hundreds more unable to access it becomes almost unbearable.

Thanks to The Times and its readers, we will be able to reach many more of these children and adults, and move a little nearer to the day when everyone with autism is able to lead a dignified life, free from fear and loneliness.

-Yours faithfully, Jane Asher, President, National Autistic Society, 393 City Road, EC1V 1NE.

* * *

Request For Advocate Articles

[The Advocate is the official overland periodic newsletter of the Autism Society of America. From Ronita Wisniewski Director of Communications, ASA national office.]

Hello. We are developing content for the Advocate and are looking for your help to secure the most knowledgeable individuals on a variety of topics who are willing and able to write for an audience of primarily parents. Below is a list of topics that we're considering covering. If you know of an individual who is well-versed on the topic and have contact information for that person (or center), please contact me directly at rwisniewski@autism-society.org. (Note: If you send an email with a suggestion, please be sure to put the words "Advocate article" (or something like that) in the subject line.

We're interested in securing articles on the following topics:

1 - Autism, Taxes and You. Tax tips for families with children with autism spectrum disorders.

2 - SSI, SSDI, and DD Waivers: What you should know about these and other governmental (Federal and State) support programs.

3 - State of the Art Resources: Tips to tapping into support agencies and resources in your state.

4 - Schools of Thought on Educating Kids with Autism. Topics might

include: inclusion; extended school year; the IEP; etc.

5 - Autism and the Law. Topics might include: an overview of IDEA; legislation of importance to the autism community (??); the rights of children/adults with autism; etc.

6 - Law Enforcement Training. Something about programs designed to train emergency service personnel (police, medical personnel, etc.) ; update on what states are doing to mandate training of law enforcement and emergency service personnel; efforts at the federal level???

7 - Autism Through the Lifespan. Series of articles overviewing what to expect as your child grows up, broken down into key categories - toddlerhood, childhood, adolescence, adulthood??? - with resource list of agencies/resources to turn to as your child progresses into adulthood.

8 - Autism and Your Insurance Company. May be too difficult a topic to address in one article given the changing laws, the variances from state to state, the variances from company to company, etc..

9 - Autism Research - Who's Doing What. An overview of federally-funded autism programs/centers run by NIH, CDC (others?).

This is by no means an exhaustive list. If you have other suggestions for article topics and can point me to an individual who could write on the topic, definitely let me know. Please be sure to be as specific as possible with your suggestions.

Also, if you are aware of a recent article on one of the topics listed above or an article that would be of interest to a national audience that can be reprinted for free and without too much hassle, please feel free to forward to me.

- Ronita Wisniewski Director of Communications, ASA rwisniewski@autism-society.org

[HMmmm, I wonder where Ronita could find good articles about autism that would be of interest to a national audience. . .HMmmm. –LS]

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