Article A: What’s
going on – Autism Trends & Notes from Rick Rollens
http://www.publichealthreports.org/current
Volume 119,
Issue 6, Pages 536-551 (November 2004)
What’s going
on? The question of time trends in autism - Mark F. Blaxill
Synopsis
Increases in the reported prevalence of autism and autistic
spectrum disorders in recent years have fueled concern
over possible environmental
causes. The author reviews the available survey literature
and finds evidence of large increases in prevalence in
both the United
States and the United Kingdom that cannot be explained by
changes in diagnostic criteria or improvements in case
ascertainment.
Incomplete ascertainment of autism cases in young child
populations is the
largest source of predictable bias in prevalence surveys;
however, this bias has, if anything, worked against the
detection of
an upward trend in recent surveys. Comparison of autism
rates by year
of birth for specific geographies provides the strongest
basis for trend assessment. Such comparisons show large
recent increases
in rates of autism and autistic spectrum disorders in both
the U.S. and the U.K. Reported rates of autism in the United
States
increased from ,3 per 10,000 children in the 1970s to .30
per 10,000 children in the 1990s, a 10-fold increase.
In the
United Kingdom,
autism rates rose from ,10 per 10,000 in the 1980s to roughly
30 per 10,000 in the 1990s. Reported rates for the full
spectrum of
autistic disorders rose from the 5 to 10 per 10,000 range
to the 50 to 80 per 10,000 range in the two countries.
A precautionary
approach suggests that the rising incidence of autism should
be
a matter of urgent public concern.
From: Rick Rollens / M.I.N.D. Institute
According to information released today by the California Department
of Developmental Services (DDS), the number of new professionally
diagnosed full syndrome cases of DSM IV autism for the quarter
ending October 2004 dropped slightly compared to the October
2003 quarterly report. 749 new cases in October 2004 vs. 786
new cases in October 2003.
It should be noted that the 749 new cases just added to California's
developmental services system between July 2004 and October 2004,
represents an increase of 26 new cases compared to the previous
April 2004 to July 2004 report, and represents the second largest
number of new cases ever reported for an October reporting period
in the history of California's 35 year old developmental services
system.
Autism, which for many years accounted for 3% of the total number
of new intakes has increased steadily over the past 24 years
to today where it accounts for 63% of all the new intakes, thus
making full syndrome autism the largest and fastest growing disability
in California's developmental services system.
In July 2003 California
adopted a new additional "substantial
disability" criteria for eligibility into California's developmental
services system. Not only must persons with mental retardation,
epilepsy, cerebral palsy, and autism be professionally diagnosed
(and in the case of autism receive a diagnosis of full syndrome
DSM IV autism, not including any other autism spectrum disorder
such as PDD, NOS, or Asperger's Syndrome), they now must demonstrate "significant
functional limitations in three or more of the following areas
of major life activity:"
1. Self-care
2. Receptive and expressive language
3. Learning
4. Mobility
5. Self-direction
6. Capacity for independent living
7. Economic self-sufficiency
Since the implementation of the new law in July 2003 there has
been a decrease in the number of new intakes in all four categories
of disabilities in California's system. In some categories the
decrease in the number of new intakes has been substantial.
When comparing the number of new intakes between July 2002 to
July 2003 (prior to the new requirements) and July 2003 to July
2004 (the first full year since the implementation of the new
requirements), Cerebral Palsy intakes declined by 60%, Epilepsy
intakes declined by 59%, Mental Retardation intakes declined
by 29%, and Autism intakes declined by 1%.
As sustained by the
M.I.N.D. Institute (Byrd Study) California's developmental
services system has a remarkable 92% accuracy rate
when diagnosing full syndrome DSM IV autism cases. There is very
little "fat" in the full syndrome autism caseload which
has been growing at epidemic proportions for many years now.
As expected, children
with full syndrome autism generally fail in at least 3 and
as many as 6 of the areas of "major life
activities" as defined above, therefore one would expect
that autism would be the least impacted of all the categories
by the new, additional requirements for eligibility, and the
1% reduction in autism, compared to 60%, 59% and 29% reductions
respectively in Cerebral Palsy, Epilepsy, and Mental Retardation,
bares that out.
The question of the reduction of the mercury containing preservative
Thimerosal from pediatric vaccines and it's effect on the number
of new cases of autism will be answered here in California in
the near future. We now know how sensitive California's system
is to reporting changes in the number of new intakes when a new
factor has been introduced. We also know that California's system
does not include children under the age of three years old. Therefore,
if one believes that the real decline in the mercury exposure
began in 2001 and further declines in mercury containing vaccines
over subsequent years, then the first impacted birth cohort (birth
year 2001) should start showing up in our system in 2005. We
will watch and report the upcoming California quarterly reports
with great interest.
Article B: WHAT’S
THE BIG IDEA? IDEA Re-authorization important information!:
Special thanks to amazing mom Gina Levy
Unfortunately, Congress hasn't forgotten about the IDEA reauthorization.
They are scheduled to take up this matter when they return in
November.
All of us parents need to realize that Special Education is
NOT a right guaranteed by the Constitution, but a right only
granted to us by statute. As such, it must continually be reauthorized
(every 5 years). Like the tax laws, the pendulum tends to swing
one way and then the other, and who lobbies the loudest gets
the pendulum to swing to their side.
The last reauthorization was in 1997. As most of us didn't have
kids affected by the prior law, we weren't even aware it was
ever any different. The 1997 changes granted parents more rights,
specifically to be a part of the IEP team.
In the current reauthorization, teachers and special ed. professional
organizations have lobbied hard to get the paperwork reduced
and funding increased. See the CEC's document at
http://www.cec.sped.org/pp/IDEAReAuthorizationIssues.pdf
I doubt the former has much of a chance, due to the recent granting of major
tax cuts and the current deficit. The latter is a serious concern to me. If
the IDEA wasn't funded at the full 40% when we had a budget surplus, I seriously
doubt it will be funded this year. In addition, neither the Senate nor the
House versions of the bill permanently authorize Early Intervention (Part C).
There are several changes being proposed that we as parents
should be very concerned about. One is the elimination of short-term
objectives. Another is a proposal to develop 3 year IEPs as a
pilot project. I am most concerned, however, about the ability
to 'excuse' members from attending IEP meetings and no longer
requiring general education teachers to always attend - there
are now exceptions to that rule.
Seems like the teacher and professional organizations have done
a very good job of lobbying for reduced paperwork and meeting
time.
Legal fees are also an issue (Guess who lobbied for these??
School districts!) The House version also seeks to cap attorney
fees by allowing the Governor of the state to set them. Voluntary
Binding Arbitration may also make it into the final bill as a
way to reduce the number of due process hearings and legal fees.
The other area that really concerns me is they want to quantify
developmental delays. A child would have to be 35% delayed in
one area or 25% in two areas to qualify for early intervention.
Regional centers could reduce caseloads by saying a child was
not sufficiently delayed. Parents who could afford independent
evaluations could argue, but less affluent parents would be stuck.
I really urge parents on this list to contact their US Reps
between now and the election and let them know how important
this law is to us. I have no idea who will be on the conference
committee, but from what I see, not much of what will change
in the reauthorization will benefit parents.
I am very concerned - You should be too.
- Gina Levy
RESOURCES:
If you want to know what the special education administrators
are doing about the reauthorization, check out this website:
http://www.casecec.org/legislative.htm
The ranking minority member of the House Committee is Rep. George
Miller (D-CA) – he is from District 7 in Northern California.
The best way to reach him with our concerns is if someone has
a contact in his district. http://www.house.gov/georgemiller/newweb/ca07.gif
The administrators are making their needs known, we must as
well.
Protection and Advocacy’s website has a PDF file which compares
the current law with both the House and Senate versions of the
law. This report is 155 pages long! http://www.napas.org/I-3/I-3-F/3_way_side_by_side_final.pdf
I don’t know about you, but the sheer size of that file has me
worried that IDEA as we know it will be gutted.
For more information on what we can do – see Our Children Left
Behind http://pub60.ezboard.com/fourchildrenleftbehindfrm28.showMessage?topicID=40.topic
Article C: King of
the Prom
http://www.latimes.com/news/local/la-me-king24oct24,1,6863955.story
Acceptance
Reigns Along With a King
Autistic student wins hearts--and prized homecoming crown--at
Culver City High.
By Cara Mia DiMassa and Zeke Minaya Times Staff Writers October
24, 2004
David Mason crossed his fingers and squeezed his eyes shut
as he listened to the announcement that confirmed his dream:
This Culver City High School senior, an autistic youth enrolled
in the campus' special education program, was named homecoming
king after a landslide vote.
Fireworks exploded as last year's king plopped a fake gold
crown on David's head. And the crowd in the bleachers cheered
wildly.
For the 2,096 students and teachers of Culver City High, Mason's
reign as homecoming king tells of a remarkable bonding that has
taken place at their school between a small group of special
education students and the rest of the student body.
"Even though this school may seem like it's, you know,
all about football and all that, we have more respect than you
think," said 10th-grader Paul Corker. "The homecoming
king contest here is not a popularity contest. We don't just
give it to football stars. We give it to people who deserve it."
Autism is a neurological condition with symptoms that can limit
a person's ability to communicate, form relationships and respond
appropriately to the environment. It affects each individual
differently and to varying degrees.
One in every 166 U.S. children suffers from an autism spectrum
disorder, according to an estimate by the Centers for Disease
Control and Prevention and the American Academy of Pediatrics.
Children with autism typically have trouble speaking, playing
with others and following instructions.
David, 17, has some problems expressing himself and forming
social relationships, said teacher Doreen Donahue.
"But he has overcome all of those things in such an amazing
way," Donahue said. "He has captured the hearts and
imaginations of all the kids at the school."
His special education program has focused on teaching him how
to interact with others, including taking some classes with mainstream
students.
"David is extremely popular, extremely well liked," said
the school's principal, Franca Dell'Olio. "Of course the
kids are going to elevate him to the king status, because he
is just like them…. These students have moved beyond tolerance
to acceptance."
David, who is in a class designed for students with moderate
to severe disabilities, was nominated to the court by one of
his classmates. He had competition; contenders included a football
player and a youth involved in student government.
But classmates helped
him color posters and hang them around campus. His sister,
Tamae, a junior, appeared on a video telling
other students why they should vote for her brother and "appreciate
him as much as we do."
Some students in
the mainstream program say they knew David before the campaign
as a 6-foot, 4-inch gentle giant who loves
sports. Others met him during his campaign. "He is obviously
someone special," said senior Anna Brito, a David supporter. "He's
just a really nice guy."
David's mother, Sherrie Johnson, said she wasn't surprised
when her son made the final cut last week, assuring him a spot
on the court. She was in the stands Friday night for the announcement,
fighting back tears.
Wearing a black tuxedo
with a gold tie, David led his fellow sovereigns in renditions
of "My Girl" and "What's
Going On" before they rode onto the field in a limousine.
He soaked up the loud cheer that welcomed him when he stepped
out of the limo and then strutted down a red carpet toward a
small stage along the 50-yard line.
When he heard his
name, David's face un-scrunched, his fingers unlocked. His
eyes opened wide, and he mouthed the words "Oh
my God" over and over.
Tamae Mason said
that her eyes started watering the moment she heard her brother's
name. It took her a while to gain her
voice, she said; "I was trying to say 'Yay, David!' but
it was coming out air for the first minutes," she said.
"He was so excited," said homecoming queen Vanessa
Rodriguez. "He kept saying, 'My dream came true, my dream
came true.' "
Once he was surrounded
by family and well-wishers, David crowed a bit. "I am the king!" he
cried out. Then, overcome by the emotion, he cried.
"He wouldn't take the crown off," said his mother
Saturday. "It was so awesome. David is still riding high."
Article D: Special
Ed Costs Uniting Schools; O.C. districts team up to
fight
rising expenses, driven by demand, procedures and law.
Joel Rubin Times Staff Writer 6 October 2004 Los Angeles Times
Orange County school districts are joining ranks to fight the
rising costs of educating disabled students.
By month's end, more than two dozen school districts are expected
to join the new Orange County Special Education Alliance. It
will pool hundreds of thousands of dollars from the districts
each year to fund lobbying and training efforts on their behalf
in the contentious arena of special education. But much of the
money may be spent in courtrooms fighting parents over how far
districts must go in serving disabled students.
The alliance, believed to be the first of its kind in the state,
will address what district superintendents and special education
administrators say is one of the most pressing dilemmas facing
school districts: how to fairly serve students with special needs
while keeping costs in check.
"It is a brotherhood formed around what is a major problem
that has the potential to severely damage many districts," said
Cypress School District Supt. William Eller.
Under the agreement, school districts will contribute 50 cents
to the alliance fund for each student enrolled in their schools.
If, as expected, all 27 districts in the county vote to join,
the alliance will raise more than $250,000 each year.
Federal law on special
education, which many education experts say is cumbersome and
vague, requires districts to provide every
child diagnosed as learning disabled with a "free and appropriate" education.
Children with a variety of disabilities -- including reading
problems and severe cerebral palsy -- are entitled to special
education services. If districts cannot provide the appropriate
care, they are often required to pay for students to attend specialized
private institutions.
When parents and district officials cannot agree on what services
a student requires, either side can request a hearing before
an administrative judge, whose decisions are binding.
Since 1997, the number of requests for such hearings in California
has nearly doubled -- to 3,000 last year, according to state
figures. And although the vast majority of those are resolved
before they reach a hearing, superintendents say the hundreds
that do proceed each year often result in districts being ordered
to pay for
expensive services and reimburse parents for legal fees that
often exceed $10,000.
"We're getting clobbered. It's just out of control," said
Jerry Gross, superintendent of the Saddleback Unified district.
Such extreme cases, Gross said, are part of the reason that
special ed puts such a strain on district budgets. In the Saddleback
district last year, special ed spending outpaced federal and
state special ed funding by more than $7 million, requiring Gross
to cover the shortfall from the district's general fund.
Orange County districts spend 16% to 24% of their operating
budgets on special education costs.
Superintendents say that even when parents make excessive demands,
administrators frequently concede the services rather than risk
being overturned at an arbitration hearing.
"Some parents see us as the goose laying the golden egg,
and they feel they can tap us for whatever they want," Gross
said. "We cave in, because it is so costly to pursue cases
when we lose."
Nonsense, say attorneys
and advocates for special education students. "That's a cop-out," said Kathleen Loyer,
an Orange County attorney who handles scores of special education
cases each year. "The same risks hold true for every parent." Loyer
pointed to state figures indicating that hearing decisions were
not lopsided toward parents and added that parents can demand
reimbursement from districts for legal fees only when the district
loses a hearing.
The alliance fund, superintendents said, would be used in part
to appeal decisions they believed fell outside the scope of special
education law and set dangerous precedents concerning a district's
responsibilities. The money pool will also cover costs of lobbying
state and federal lawmakers for legislation that would, for example,
place a cap on legal fees. Superintendents also plan to spend
alliance money training teachers and staff to better manage the
dozens of deadlines and procedural requirements under the law,
to avoid mistakes that can trigger rulings against districts.
Loyer dismissed the districts' claims and questioned the idea
of the alliance.
"How do they think taking taxpayer money out of the classroom
and putting it into litigation and consultants is going to be
helpful?" she said.
Superintendents expect the alliance to become active in coming
months. Its bylaws require participation by districts serving
a total of at least two-thirds of the county's students. Trustees
for 10 districts have approved membership in the alliance, and
the superintendents in the remaining districts indicated during
a recent countywide meeting that they would recommend in the
coming weeks that their boards allow them to join.
Email for
author: joel.rubin@latimes.com
Letter
in response to Article D: Insensitivity to Special-Needs Kids
Re "Special Ed Costs Uniting Schools," Oct. 6:
Saddleback schools Supt. Jerry Gross is a horrific example
of the type of
administrator that parents of special-needs kids have to deal
with.
"Some parents see us as the goose laying the golden egg," he
said. Is an appropriate education for my son really a "golden
egg"?
He acts as if my son won the lottery by being autistic.
Does he have any idea how much of our own money we spend every
year on treatment?
This obvious collusion of the Orange County school districts
to use education funds to fight to avoid paying for services
is why so many parents resort to court. And why so many school
districts are losing money.
So now the parents will have to fight a conglomerate of 27 school
districts to gain educational services for our children?
Way to go, Jerry. Let's get those greedy kids with cerebral
palsy, epilepsy, autism and Down's syndrome.
Erica Cox
San Juan Capistrano
