FEAT DAILY NEWSLETTER
Sacramento, California http://www.feat.org
February 25, 2002
News Archive Search www.feat.org/search/news.asp
·
Parents Worry Children Will Suffer If Special Education
Is Reformed
·
Dispute Over Son’s Ed Placement Brings New Fight For
Mom
·
Special Ed Decisions Raise Racial Imbalance
·
All Autistics Under Six To Get Treatment
·
Dealing With Autism—Every Day
·
Driver Fired After 4-Year-Old Leaves Bus, Walks Into
Store
·
MMR: Scare-Mongering?
·
After Shaky Start, London Bridge Reopens
·
New Tool Fosters Early Recognition, Better Dx and Rx of
Bipolar
Disorder
[By Kristen Mack in HoustonChronicle.com.]
URL: http://www.chron.com/cs/CDA/story.hts/front/1269084
Zachary Petersen would bang his head against the wall and
pull the cat’s hair out with his teeth.
At age 3, he was diagnosed with a form of autism that made
him eligible for a special-education program for preschoolers. His progress
over the next two years was dramatic.
The most tangible evidence was two months ago, when he
performed in the school Christmas play. He has done so well that in January,
officials at his preschool moved him into regular classes.
“It’s a godsend,” says his mother, Teresa Petersen.
But talk of reform in Washington, D.C., has the
Brazoria woman worried
whether Zachary’s development will be affected when the
special-education law comes before Congress for reauthorization later this
year. She plans to attend meetings of President Bush’s commission on special
education that convenes in Houston this week.
Since the U.S. government ordered schools to provide
special education in 1975, the number of students has more than doubled, to
about 6.5 million, as the number of eligible conditions has expanded. This
expansion has helped countless children, including Zachary, who would not have
qualified under the original federal guidelines.
But many educators now want either to scale back on
services or get the government to contribute more toward paying for them.
Disabilities covered under the law range from speech
impediments to severe mental retardation. Over the years, the federal
definition has broadened to include attention deficit disorder, autism and
traumatic brain injury.
That accounts for only part of the growth, however.
Educators say many kids are put in special education simply because they cannot
read.
U.S. Secretary of Education Rod Paige is among many
calling for reform of the Individuals with Disabilities Education Act, or IDEA,
which covers special education.
“Not only does it hurt those children who are
misidentified, it also reduces the resources available to serve children with
disabilities,” said Paige, who will be in Houston for some of the hearings,
which will be held Monday through Wednesday at the Warwick Hotel.
“We also need to look carefully at the disproportionate
enrollment of minority kids.”
Of particular concern are disparities in certain categories,
like the emotionally disturbed, which carry a greater stigma, according to a
study commissioned by The National Academies and released in January.
For example, 2.6 percent of black students have been
identified as mentally retarded, compared with 1.2 percent of white students,
the study found. And roughly 1.5 percent of black students are labeled as
emotionally disturbed, compared with 0.9 percent of whites.
Experts say schools need to consider the differences in
learning styles and behavior of minority children. They also want to address
the push by some schools to move children who don’t perform well out of regular
classes.
In general, special-education students—including those
with severe physical disabilities—are about twice as costly to educate as other
students.
Last year, lawmakers stripped from their education bill a
proposal to boost funding for special education by $172 billion over 10 years.
They said the program needed to be reformed before more money is put into it.
The additional money would have fulfilled a 27-year-old
promise by Congress to fund at least 40 percent of the cost of
special-education programs. Congress pays only about 15 percent, leading some
lawmakers to refer to the program as the “granddaddy of unfunded mandates.”
In the Houston Independent School District, the federal
portion of special-education funding is 13.75 percent, forcing the district to
come up with 39.6 percent, through property taxes. State funding covers the
rest.
Roughly 10 percent of HISD’s students, about 22,000
children, are enrolled in special education. That is in line with national
averages. The district spends about $80 million annually on personnel—teacher
aides, transportation attendants, therapists—and an additional $1.7 million on materials
and supplies.
“I don’t think we’re going to get there,” Carolyn Guess,
HISD’s assistant superintendent for special-education services, said of the promised
federal share. “Even if we don’t get full funding, we need to look at
additional sources.”
Educators say that as well-intentioned as IDEA is, it has
become unwieldy. The paperwork is so massive, they say, that teachers often
have little time to teach.
Schools also are required to create the “least restrictive
environment” for students, which leads districts to spend thousands of dollars
on occupational therapists, Braille machines and specialized adaptations to
desks and tables.
“We shouldn’t have to make choices like, ‘Do I buy a
$60,000 piece of equipment or 600 books for other kids in the school?’ “ said
Gary Lenley, a special-education administrator in New Caney, who taught special
education for 22 years.
“No one wants to make those decisions. The school district
has to deal with all of (the children). The parents just deal with one.”
Administrators also complain about a procedural loophole
that they say allows parents to circumvent them.
Schools are required to set annual goals for
special-education students, sometimes as seemingly simplistic as learning to
string beads or tie their shoes. But when parents disagree with these goals,
they can go to the Texas Education Agency to challenge them.
Because parents are not required to discuss the situation
with them first, administrators say they are often blindsided when they are
called to a TEA hearing or mediation.
“Special education was born on the premise of being
adversarial,” Guess said. “Because these kids were originally excluded, parents
had to fight to get an education for kids.”
These hearings can cost $80,000 to $100,000 each,
Guess said.
law,” said Christopher Borreca, an attorney who represents
HISD in these hearings.
“Parents fall victim to the formality of the law. It’s counterintuitive
to the nurturing relationship children should have.”
Learning the lingo alone can be intimidating for parents.
Experts familiar with the law toss around such acronyms as BIP (for Behavioral Intervention
Plan), ARD (Admission, Review, Dismissal) and IEP (Individual Education Plans).
“Parents get overwhelmed by the system,” said
Petersen, Zachary’s mom.
“There are rules on what to do and how to do it. It’s
daunting.” In the early days, all Petersen knew for sure was that rearing her
son would be a challenge.
From a young age, he would mimic people’s behaviors to the
point of adopting their personalities, and often pace back and forth.
“I couldn’t console him,” she recalled. “I started
realizing there was something fragile about my son that I didn’t understand.”
She knew they needed professional help. A couple of years
ago, Zachary was diagnosed with “Pervasive Developmental Disorder—not otherwise
specified.”
As vague as that sounds, Petersen knew the problem
was real.
everything within a three-block radius sounds the same,
there is no such thing as background noise. Even light touches feel like an
attack.
Because special education is available from age 3 to 21,
Petersen enrolled her son in a preschool program at the local public school.
Zachary received therapy and soon was allowing his mother to comb his hair or
give him a hug.
“The messages they receive are slower and less clear,” Sue
Zapf, the child’s occupational therapist, said of people who suffer from his
disorder. “They are in a different
world than we are.”
Using therapy that seems more like play—swinging on his
stomach while reaching for Beanie Babies, for instance, or crawling through a
tube or jumping into a pen of balls—helps him process where his body is in relation
to other things.
Under the initial federal requirements of special
education, he would not have been eligible to receive any of this help.
Petersen is wary of what federal reform might mean for
her child.
“He’s headed for full inclusion,” she said, “but he’s
also headed for
a crack in the system.”
She worries that even though Zachary is doing well enough
academically to be placed in a regular classroom, he could be kicked out of
school if he acts up too much. She worries that a regular teacher would not
understand that his behavior is a byproduct of his disability.
“I know there are going to be some battles,” she
said.
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* * *
Dispute Over Son’s Ed Placement Brings New Fight For Mom
Suit contests restricting special-ed issues to state
lawyers
[By Linda Conner Lambeck.]
http://www.connpost.com/Stories/0,1002,3750%257E419994,00.html
A Connecticut mom fighting for what she considers to be
the best placement for her autistic son now finds herself battling the state as
well over a new rule that bars her son from being represented by the attorney
of her choice.
“If you commit a murder, you can hire a lawyer that comes
from anyplace. But if you’re disabled and need a school placement you have to take
who they say? That’s not right,” said Mary Ann Lombardi, who, along with New
York City attorney Gary S. Mayerson, recently filed a lawsuit in U.S. District
Court in Bridgeport.
The lawsuit accuses the state’s 10 special education
hearing officers of “hijacking” the due-process system they oversee without any
legal authority to do so. It asks the court to grant a permanent injunction against
the Connecticut-attorney-only rule.
Officers are appointed by the state to hear special
education cases in which parents and school districts cannot agree on a student’s
educational placement. About 200 requests are made for such due process
hearings each year and about 30 are heard.
Last September, the hearing officers met and adopted a
rule that bars anyone who is not a practicing Connecticut attorney from
representing anyone at one of their hearings.
A notice the hearing officers sent to parents involved in
due process hearings cites a recent Delaware Supreme Court ruling that while
special education parents can hire a non-attorney advocate, that person can’t perform
tasks typically performed by an attorney. The notice maintains the state
Supreme Court would likely rule the same way.
While in most state Superior Court proceedings,
out-of-state attorneys can get special permission to represent clients, no such
mechanism exists for due process hearings.
Mark Stapleton, chief of legal and governmental affairs
for the state Department of Education—whose office selects, trains and assigns
hearing officers—called the situation a “gray area” that he’s looking into.
“I know [the hearing officers] had a problem with
non-attorneys representing parents, but we’re going to have a conversation with
them and hopefully weigh in on this,” Stapleton said.
Attorney General Richard Blumenthal’s office also is
examining the matter.
Committees of the Connecticut Bar Association, which met
in January, chose not to render an opinion in the case.
The lawsuit charges the new rule is in direct conflict
with the federal Individuals with Disabilities Education Act, which guarantees
due process hearing participants the right to counsel and individuals who can help
them.
The suit also contends hearing officers do not have the
power to take any collective action. The action they took belongs in the hands
of the Legislature, the suit said.
The hearing for Lombardi’s 10-year-old son, Gianni,
meanwhile, is ongoing. He remains in a segregated classroom in Wilton public
schools.
Severely autistic, Gianni became so violent last year he
had to be hospitalized for five weeks until his medication could be stabilized.
Eventually, he returned to school, but his parents say it’s
been a bumpy road.
Gianni still exhibits some highly aggressive behaviors and
needs support during his every waking hour, his mother said. She wants her son
in a residential placement where he can receive the structure he needs. Wilton school
officials want to keep the student in the district.
Lombardi said when the matter was referred to a due
process hearing she hired Mayerson because he specializes in defending children
diagnosed with autism spectrum disorders. He has testified before Congress on
the subject, written guides for parents and has successfully represented children
all over the country and in Connecticut.
But hearing officer Christine Spak barred her attorney
from speaking at a hearing last fall in Middletown.
Lombardi said she had to hire a Norwalk attorney to sit by
Mayerson’s side and do his talking for him. She called the situation silly and
awkward. The lawsuit said it has “poisoned”
the proceeding by creating an atmosphere of daily contentiousness and
confrontation with the hearing officer.
It’s also adding expense to the Wilton due process
proceeding, which is expected to drag on until April.
Neither Spak nor Lawrence Campane, the attorney
representing Wilton, could be reached for comment.
Some state officials have suggested privately, however,
that Mayerson could correct the situation by simply taking and passing the Connecticut
bar.
“If he does this much work in the state, why doesn’t he,”
said one state education official who asked not to be named.
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* * *
Special Ed Decisions Raise Racial Imbalance
By Bill Hirschman
http://www.sun-sentinel.com/news/local/southflorida/sfl-ese0224.story
Sun-Sentinel: News Local “What persists is the stinging shame. Despite
graduating with honors from Suncoast High School, even after earning a master’s
degree in electrical engineering, Cleon Davis still recalls being labeled
severely learning disabled for four years of elementary school.”...many are
intimidated by the educational bureaucracy, say parents of ESE students. Low-income
parents may lack the confidence to challenge the judgment of **special
education** professionals. “If I hadn’t stood up for my son, they would have
just sucked him down the drain,” Debra Robinson said. ...
* * *
All Autistics Under Six To Get Treatment
Promise made by lawyer for attorney-general
http://www.canada.com/vancouver/news/story.asp?id={CD5F10F0-0015-4124-8A36-4
4F5913BC3B1}
Kim Pemberton
Vancouver Sun
February 22, 2002
All autistic children in B.C. under the age of six will
get treatment by the end of the year, a lawyer for the attorney-general’s
ministry promised Thursday. But while the government is willing to provide
early intervention services it doesn’t believe the courts have the right to
mandate such treatment, Lisa Mrozinski said… the province is appealing a ruling
by B.C. Supreme Court Justice Marion
Allan that the government is required to provide treatment for autistic
children.
* * *
Dealing With Autism—Every Day
http://www.cnn.com/2002/HEALTH/parenting/02/24/life.with.autism.ap/index.htm
l
CNN.com February 24, 2002
“Alex wasn’t like his brother, Willy. When Willy was 2
years old, he was talking, and talking a lot; when Alex was 2 years old, he ...
wasn’t.”
Matching text:
Driver Fired After 4-Year-Old Leaves Bus, Walks Into Store
http://www.columbiatribune.com/2002/Feb/20020223News022.asp
...of the driver, who had no previous mishap during her tenure. Thirty-five to
40 children, 3 to 5 years old, ride buses to attend special education preschool
programs...
State’s Cuts Squeeze Out Group Homes For Disabled http://www.chicagotribune.com/news/local/chi-0202230175feb23.story
Chicago Tribune As Illinois continues to cut payments to group homes for the
developmentally disabled, a company that runs 20 of the homes said it can no
longer afford to operate here, leaving dozens of residents and their families
wondering about their futures.” ...eight people with disabilities live in each
home, with 24-hour supervision. “We have no idea what’s going to happen,” said Cheryl
Kinsinger, whose autistic son Lance, 26, lives at one of the homes run by
Dungarvin. “But some of these people have no family...
[In Private Eye. Not yet available online. Thanks to
John Fletcher.]
When, 16 months ago, an “incalculably small risk” was
identified in a polio vaccine derived from potentially “mad” British cows, the
government withdrew it from the market. At the time chief medical officer Sir
Liam Donaldson said: “Public confidence in medicine safety is paramount. We
have to approach this from a precautionary principle...”
With public confidence in the MMR triple vaccine now at a
critical low and with new research showing there might be a risk, one might
have expected similar caution to apply. Even if the government didn’t bow to
pressure to withdraw the triple jab, it might have been sympathetic to the
overwhelming wish of parents to be offered the choice of single vaccines
instead. But no. Donaldson, along with
ministers and other government health advisers, went on a bullyboy offensive
instead, accusing those who express doubt or concern of “scare-mongering” and “playing
Russian roulette” with children’s lives.
In fact it is the latest research in the MMR-autism
controversy - a study that shows the unexplained presence of the measles virus
in the guts of vaccinated children who have both serious gut and bowel disease
and autism - which has alarmed parents.
The study comes from Dublin-based Prof John O’Leary, and a
team including Andrew Wakefield, the gastro-enterologist at the centre of the MMR-autism
furore. Again, it does not prove a link and the scientists behind the paper are
not claiming that it does. But it does raise serious questions.
What is the virus doing in children who have received
either the MMR vaccine or another vaccine containing measles? Everyone knows
how potentially damaging measles can be, so is it responsible for the rare gut disease
from which they all suffer? Could that in turn trigger autism? Or is it a case
of children who are prone to develop autism and gut disease have immune systems
which render their bodies unable to properly deal with the measles virus,
either from the vaccine or the wild?
These questions need serious investigation. But Sir Liam’s
response was to say the paper is “riddled with flaws”. Really? The paper has
been fully peer-reviewed and the researchers offered their raw data for
scrutiny.
One criticism has been that the team did not do DNA
sequencing to find out if the measles virus came from vaccine or the wild. But
it would be an amazing coincidence if all the children from different parts of
the country had contracted wild measles, when we have relatively few outbreaks.
That in any case would raise questions about the efficacy of the jab -
something the government might also want to investigate.
Instead, Tony Blair and Co tell parents there is nothing
to worry about and the vaccine is safe. But there are hundreds of intelligent
and resourceful parents, many of whom have read far more scientific papers on vaccines
than any politician, who are convinced their children have been horrifically
damaged by the triple vaccine.
They have access to the web and circulate critiques of the
latest research almost as soon as it is published. They are not scare-mongering
zealots who want to “see a return to the dark ages”, but their children do share
a rare combination of conditions that they appeared to develop after receiving
MMR. That may eventually prove to be coincidental; but so far nothing the
government has said - and none of the studies it has cited as proof that there
is no link - has changed their minds. (Indeed, the Institute of Medicine in the
US has already conceded that in rare cases there just might be a link.)
Nor did an epidemiological study released last week - the
latest from Prof Brent Taylor, head of child health at the Royal Free Hospital
in London, and described by Dr David Salisbury, government head of immunology, as
a “clean and elegant piece of work” - reassure parents. This study looked at
the case papers of 473 children with autism born between 1979 and 1998 and
found that the percentage of children who developed regressional autism was no
higher before the introduction of MMR in 1988 than it was afterwards. Nor was there any difference in the
frequency of autistic or bowel problems in children who had MMR before their
parents became concerned about their development and those who had MMR
afterwards or did not have it.
This paper - unlike the O’Leary paper - shows little raw
data. It does not show the distribution of the children by year of birth and
deals only in percentages, which makes it difficult to interpret because no
idea is given of how many children are being dealt with in each year. On the
face of it the research shows a straight line for autism and bowel disease across
the 20-year period - but we know both have risen dramatically. It is most
likely that Taylor has very few children in the early year groups and many more
later.
Neither does the paper reveal how many in each group had
MMR or what criteria Taylor has used to decide “regressional” autism as against
“classic” autism (when the oldest children in his group were diagnosed as autistic,
it was a good 15 years before a new variant regressive type had even been
identified).
Prof Taylor claimed last week that this paper “should be
close to the end game” for the MMR-autism hypothesis, and that MMR has the
safest profile of any vaccine. Yet MMR accounts for the largest claims in the
US for vaccine damage compensation. Interestingly, to fund this relatively
generous scheme (compensation bill to date: US$1.3billion) the vaccine
manufacturers pay a tax per vaccine into the communal pot on a sliding scale of
risk. MMR was assessed in second place to DPT (diphtheria, whooping cough and tetanus),
attracting a tax of US$4.44 per dose compared to just 29 cents for polio, for
example. One recognised category for compensation is vaccine-induced measles.
It is no longer enough simply to say that millions of
doses have been used in 90 countries as evidence of safety. As Eye readers will
recall, early MMR had to be withdrawn after it caused mumps-related meningitis around
the world. Other countries, including Finland, Sweden and in particular the US,
have recorded unexplained hikes in autism rates. On the other side of the coin,
Japan does not use MMR and does experience high rates of measles-related
deaths. 17 last year. It, unfortunately, does not record autism rates.
No one in Britain wants to see a re-emergence of measles.
But people do want to know why autism rates are growing; and for faith to be
restored in our vaccination programme, MMR has to be ruled in or out - or at
least an honest assessment has to be made of the relative risks. That requires
open research and debate and the choice of single vaccines for parents.
* * *
After Shaky Start, London Bridge Reopens http://www.washingtonpost.com/wp-dyn/articles/A55455-2002Feb23.html
washingtonpost.com)
…refusing to have their babies inoculated with the
standard measles, mumps and rubella vaccine, because of a single doctor’s
speculation that it might cause autism. Britain’s Health Ministry has warned
that the country faces a potential epidemic of measles as a result. It was that
same skeptical mood that...
New Tool Fosters Early Recognition, Better Dx and Rx of
Bipolar Disorder An Often Misdiagnosed Illness http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/02-22
-2002/0001674364&EDATE= Bipolar Disorder Kit Available Free From The
National Depressive and Manic-Depressive Association… Seven out of 10 people
with bipolardisorder (often known as manic depression) receive at least one
misdiagnosis,and the average length of time from onset of symptoms to correct
diagnosis is10 years. Delayed diagnosis
or misdiagnosis for people with bipolar disordercontributes to 50 percent of
this group abusing alcohol or drugs at some pointin their lives.
APRIL 21, 2002 - 12 Noon to 5pm
“The Power of ONE! I.D.E.A.”
Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org
Michelle Guppy
Catherine Johnson PhD
• Ron Sleith •
Kay Stammers • Edward Decelie
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