AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Saturday January 19, 2002
INDEX:
* Legal advice for
autistic children and their families
* Lesson plans for kids are still being written
* Innovative care calms behavior
* Operation Final Push
******************************
Legal advice for autistic children and their
families
BY FRANCES GIBB, LEGAL EDITOR
CLARISSA COLEMAN relishes
tough fights. She is a litigation solicitor with Clifford Chance, Britain’s
biggest law firm, and top-level corporate deals with millions of pounds at
stake are her daily work. But for a few hours every week, she grapples with a
fight of a quite different kind — for autistic children and their families. Ms
Coleman, 27, works for the National Autism Society tribunal support service,
representing families at tribunals who may wish to appeal decisions about
special educational needs for their children. Like a number of City lawyers,
she has always been active in pro bono or free legal advice work and so
became involved with the NAS tribunal support scheme when Clifford Chance set
it up two years ago: “You might have a family who need representation but can’t
afford it, or else the case is complex and they don’t have the knowledge to
represent themselves.” “It might be a case where the local authority has
refused to assess an autistic child for special educational needs; or you might
be fighting for an autistic child to stay in a mainstream school, but with
special help.” Clifford Chance expects Ms Coleman to do 1,700 “chargeable” or
fee-earning hours of work a year, on top of which she does at least 100 hours pro
bono. The work is equally challenging — and more personal: “In terms of
time, it can be a problem, but we just fit it in. If it means staying late,
then that’s what we do. It’s worth doing because it makes a difference to
people’s lives. “It’s not necessarily more emotional — people doing big
corporate deals can get emotional — but it does mean you can handle a case from
start to finish, and see it right through to the result, which is satisfying.
We are also very concerned to ensure the work is of the same quality as
anything else we do.” One day she is handling a contract worth £20 million,
preparing pleadings, speaking to clients at a large City bank, preparing
witness statements, and the next she is talking to a mother about an autistic
child and what school the child should be going to; or with the local education
authority about a child who needs speech therapy which is not being provided.
The scheme has been highly successful. Some 27 lawyers at Clifford Chance have
been trained to provide the representation for families at the tribunals, and
another 30 or so are currently being trained by the firm. It has taken on 32
cases to date. Of the 18 completed, ten have been upheld and six satisfactorily
settled without the need to go to a hearing. One case was withdrawn and one was
dismissed. In total, the lawyers and administrators have provided some 2,000
hours’ work and helped some 170 families. Nine other law firms with specialist
education departments also help the scheme with advice. The tribunal support
scheme itself is only part of the National Autistic Society general Advocacy
for Education Service, launched by Cherie Booth, QC, in February 2000 and run
by volunteers. As well as the tribunal support, there is an “Education Advocacy
line” which provides telephone-based advice and support from their homes to
parents in England and Wales on any difficulties with special educational needs
and entitlements. Julia Cockram is a solicitor, now working at home to look
after her teenage children. She spends three days a week giving telephone
advice to families and helping them to prepare the papers for any tribunal
appeals which they are handling themselves: “If at all possible, we aim to help
families do the cases themselves. Local authorities have all the resources they
need to fight these cases but it’s very difficult for the families — they can
have enormous practical difficulties and on top of that have a difficult
technical appeal. We can help to prepare it for them and support them through
it, which takes some of the worry off them.” By working on the telephone and
computer, she can help families throughout the country: “I’ve always been
interested in charity work and with my children now a bit older I thought I can
spend the time and put my legal skills to good use.” The lawyer-volunteers
inevitably get caught up with the cases they take on. Clarissa Coleman
remembers one of her first, in which a boy was being badly bullied at school —
not uncommon among austistic children: “We managed to get him into a special
school for autistic children, but at first he was refusing to go. But I spoke
to them a couple of months ago and he’s loving it. It’s nice to keep in touch
and see how that child has moved on.” The mother had been at the end of her
tether, took the child out of school and was paying for a home tutor. “It’s the
human element: you know the family is really relying on you and you want to get
it right for them. It’s not just a matter of money with these cases. Whatever
happens is that child’s future.”
National Austistic Society: Advocacy Service Manager, Angie Lee-Foster: 020
7903 3763, www.nas.org.uk; Education
Advocacy Line: 0800 358 8667; Tribunal Support Scheme: 0800 358 8668, www.nas.org.uk, advocacy@nas.org.uk
http://www.thetimes.co.uk/article/0,,61-2002027020,00.html
******************************
Lesson plans for kids are still being written
BY JUDITH NYGREN
COPYRIGHT © 2002 OMAHA WORLD-HERALD
RELATED STORIES
Your
Newspaper: Series investigates mental health system 
Day
4: In detention center, the wait can stretch on 
Innovative
care calms behavior 
Glossary
of terms, Day 5 
School
district embraces 'wraparound' approach 
The educational plan for a child with mental illness looks straightforward on
paper.
Leo gets excited about his schoolwork
under the eye of Jane Peterson, whose innovative program has helped calm the
7-year-old's aggressive behavior.
Follow steps 1, 2, 3 - seat the child in the front row to limit distractions,
give him specific directions for each task, let him move about at set times -
and every child in the classroom should learn and grow. Reality is far
different. Nebraska classrooms often become battlegrounds for parents and
educators who can't agree on how best to teach a mentally ill child.
Parents say they are tired of asking legal or mental-health advocates to attend
school meetings, tired of poring over federal law to understand their children's
rights, tired of shopping for more accepting, more respectful teachers or
schools. Educators, in turn, struggle with student behavior that disrupts
classrooms and parental demands that even family advocates say can be
unreasonable. Despite their differences, the two sides share some common
ground. Both call for more coordination between schools and mental-health
agencies. Both support giving teachers more know-how to deal with mental
illness. "It's ridiculous to ask a third-grade teacher with 20 children to
stop everything and ignore the others" when one child, struggling with
mental illness, acts inappropriately, said Trina Osher of the national
Federation of Families for Children's Mental Health, based in Washington, D.C.
The importance of more training and outside help lies in the unique mission of
public schools. The law says they must open their classrooms to children with
the full range of mental illness, mild to profound. Yet learning often hinges
on good medical treatment. "Schools aren't going to be able to have a wing
of psychiatrists," said John Hill, a special education expert at the
University of Nebraska at Omaha. "This is a community-school-parent
thing." There are about 70,000 school-age children in Nebraska and 115,000
in Iowa with a diagnosable mental disorder - half of whom suffer serious
illness. While no one tracks their performance in school as a group, educators
say most mentally ill children do well in school, many never needing special
educational accommodations. Many children with attention deficit hyperactivity
disorder, for example, progress academically in the regular classroom. But many
with serious mental illness do struggle. Nationally, an estimated six children
in 10 will eventually drop out of school. In school, the nature of the illness
means a child's classroom behavior can change from day to day, sometimes hour
to hour. Some behaviors earn students stigmatizing labels: troubled, difficult,
even dangerous. Ken Bird, superintendent of Westside Community Schools in
Omaha, said one of the most common reasons parents call him is when they're
upset that their child has a disruptive classmate - frequently a mentally ill
child. Behavior reports on a Lincoln first-grader illustrate how these
conflicts can play out. The classroom problems had built for weeks. Sept.
14: The boy blocks the classroom doorway with chairs, runs down the
hallway, smacks a student on the back and tells a teacher, "I'll kick your
ass." He is restrained for two minutes. Later, in a series of events, he
hits a student, throws classroom materials, chases classmates, yells and rips
up paper. By day's end, he has had four time-outs, been restrained twice and
removed from class once. Sept. 15: Parents of two classmates tell the
principal their children are afraid of the boy. One girl cries at night and
says she doesn't want to go to school. The principal says the boy will receive
one-on-one attention and might be removed until he can earn his way back in. Sept.
17: The boy, trying to interact, grabs a child around the head and throat.
He is sent home for the rest of the day to cool down. The staff decides the boy
cannot return to the regular classroom. Lincoln educators placed the boy in a
special education class, and they tap mental-health services when needed to manage
his illness. Too often, parents and family advocates say, schools are unwilling
or unable to make such special arrangements. Joe Hershfeldt said he and his
wife confronted a choice all too common among parents of mentally ill children
- to home-school or hunt for a new school. The couple's son, who has attention
deficit hyperactivity disorder, struggled in their Panhandle town. The
Hershfeldts had agreed to put him on medication, met regularly with teachers
and asked administrators to stop other children from bullying the boy. Things
didn't improve. In fact, Hershfeldt said, his son felt sick just thinking about
another school day. Again and again, he was sent home for breaking rules. The
family's relations with educators deteriorated. The child finished the first
semester of fourth grade unable to read or write. So the Hershfeldts demanded
that their son be transferred to the Chadron school district, about an hour
away. There, their son developed a good rapport with a teacher and no longer
felt bullied. After one semester, he had begun to read. Five years later, the
Chadron High freshman continues to learn, has made friends and has missed only
one day of school for health reasons since changing districts. Over and over,
parents like the Hershfeldts say the education of their children comes down to
finding the right school; a compassionate, competent principal; understanding,
patient teachers. And that, parents say, is downright wrong. Federal law
guarantees that mentally ill children with special classroom needs receive a
free and appropriate education - not an education at only those schools willing
to accommodate their illness. The obstacles are numerous. One key is resources,
particularly for more rural schools, where mental-health services can be scarce.
A western Nebraska superintendent said he once had a student report to the city
jail for daily tutoring. It was the only place teachers felt comfortable
meeting with the child. Sometimes teachers, mental-health professionals and
parents can't decide how to serve the child because of something as basic as
language. Educators and mental-health professionals each have their own - often
impenetrable - jargon. Parents typically don't speak either language and end up
feeling like outsiders in their children's education. Occasionally, the biggest
obstacle is fear - on everyone's part. Many parents complain privately about
teachers or schools but refuse to speak publicly. To do so, they say, is to
risk angering educators and further fraying relations. Administrators, in turn,
worry that families will demand a "Cadillac" education when federal
special education law provides for a "Chevy." Bird still cringes over
a legal battle that was settled more than a decade ago. An Omaha couple
successfully sued Bird's district on the grounds that their daughter didn't
progress under Westside's special education program - despite what Bird
characterized as teachers' extensive efforts to help the girl. A judge granted
the parents tuition to a pricey, private Texas program that offered, among
other things, therapy working with horses. The tension between educators and
families often is understandable - but it isn't necessarily inevitable, said
Tim Lewis, a University of Missouri professor and expert on children with
emotional and behavior disorders. The mandate to accept all schoolchildren must
also come with the training to teach those children, Lewis and others said.
Nebraska education officials say they are trying to help teachers and future
teachers reach out to mentally ill children. In the past few years, the state
has introduced a couple of initiatives designed to give interested educators
more information on issues such as behavior disorders, mental illness and
counseling. Is it enough? No, they say, but it is a start. Once teachers have
the training, they can better spot children who otherwise might not get help,
said Tina Steele, a Hastings teacher who works with troubled students. They
also can recognize when they need to tap outside professionals to address a
child's medical needs, allowing them to remain focused on education. "Even
if your district doesn't have services, it helps to have teachers with a
working knowledge" of mental illness, Steele said. "A lot of it is
just knowing what the problem is so you can figure out how to get (outside)
help."
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=283158
******************************
Innovative care calms behavior
BY LISA PRUE
WORLD-HERALD STAFF WRITER
RELATED STORY
Glossary of terms, Day 5 
By the time Leo was 31/2, three day
cares had kicked him out.
Leo is taken to a time-out room at Behave'N Day Center as part of
a program to help him deal with his aggressive behavior. The center uses a
combination of nearly constant praise, rewards and time-outs. After his time at
the center, Leo was able to make a smooth return to his second-grade classroom.
He hit one teacher hard enough to send her glasses flying and cut her nose.
Over the next three years, his aggressive behavior continued. His kindergarten
teacher called his mother at work every day. Leo attacked his teacher on one
occasion, a student on another. "He would destroy the classroom,"
said his mother, Kristen Massman. Now 7 years old, Leo has learned to recognize
when he is getting upset. He can calm himself instead of going into a rage.
Perhaps more importantly, he's made friends. "He never had friends
before," his mother said, "because everybody was so afraid of him."
Leo's story shows what a difference it can make when several things go right:
an alert parent, an early diagnosis, access to appropriate community-based
treatment and strong communication among parents, care providers and educators.
Kristen first noticed something was wrong when Leo was 2. "I didn't know a
kid who could be so angry, aggressive, then loud and happy - all at once,"
the Ralston mom said. Her pediatrician and other doctors gave her parenting
advice. But she knew her only child needed more than strict discipline. Through
Internet research, she decided he had symptoms of bipolar disorder, a
biologically based mental illness. He would rage for hours, then be deliriously
happy. In September 2000, a psychologist confirmed that Leo was bipolar and
prescribed mood-stabilizing drugs. But by last January, at age 6, he was so
despondent he tried to run in front of a passing car. His mother grabbed him
just in time. He continued to struggle, even after a hospitalization. He was
placed in Ralston's alternative school but was soon asked to leave because of
his behavior. Late last spring, Leo's psychiatrist prescribed lithium, a
powerful mood stabilizer. And a respite center told Kristen about a new
treatment option.
Leo, 7, does schoolwork at Behave 'N Day Center under the eye of
Jane Peterson, who started the program. Children attend the center for
three months on average. Some are under a psychologist's or psychiatrist's
care, and several have a diagnosed mental illness.
Behave 'N Day Center is the innovation of Jane Peterson, a licensed
mental-health practitioner. She works with up to a dozen 2- to 7-year-olds at a
time. The children, who have a range of behavior disorders, attend the center
for three months on average. There is one caregiver for every three children.
Medicaid or school districts pay the $55 daily fee for children they refer.
Other parents pay on their own or receive federal Title 20 assistance. After
Leo's first day there in late May, Kristen was convinced he would not be
welcomed back. "The first day I picked Leo up, he was in the time-out
room," she said. "He was back there just cussing and screaming and
throwing a fit." But behavior like Leo's is common among the center's
children, Peterson said. Many have been expelled from day cares. Some are under
a psychologist's or psychiatrist's care, and several have a diagnosed mental
illness. "It is nothing for them to pick up a chair and throw it across
the room," Peterson said. After a week, a once-wailing, violent child is
usually calmer, more attentive and compliant. Leo, one of the older children,
took a little longer. "It was several weeks," his mom said, "but
Janie really has gotten a hold on his behavior." The center uses a
combination of nearly constant praise, rewards and time-outs. Any mishap -
talking out of turn, not asking permission, not following directions - brings
an immediate reprimand. "They really need loving but firm structure,"
said Dr. David Walker, Leo's psychiatrist. "These are not kids that you
can expect to structure their own world. You really have to stay on top of
things." Instruction might begin the first time a child takes a toy
without asking. After a gentle reminder to ask nicely, the child usually will ask
first the next time. "The child is lavished with praise," she said,
"and they are grinning from ear to ear." Typically, they begin to
understand within days what behavior will produce praise and rewards. Peterson
stressed that these children aren't simply the product of bad parenting.
"These kids come in with huge rates of aggression and are not your typical
child, so typical parenting - even if it is very sound - is not going to solve
that," she said. "Normal kids can figure out that if you do something
bad at school, the parent gives a consequence at home. They've figured out that
they shouldn't do that the next day," she said. "These kids cannot
make that connection. These are kids that are wired differently," she
said. "They need the booster shot of what they are learning during the day
and at home at night to get back on the straight and narrow." Walker is
impressed with Leo's progress. "To be honest, I didn't expect a response
that quickly," he said. The center provided "excellent feedback"
in the form of meticulous notes, he said. "That is the kind of stuff I
need to make a clear diagnosis." He also credits Leo's mother. "She
was willing to open her eyes and deal with the fact that she is dealing with a
child who has emotional needs that need to be addressed," Walker said.
"It can be scary for parents, and they have this idea that a psychiatrist
will blame the parents." Peterson said her program, rare in this area,
needs follow-up care for long-term success. She is opening a second center this
month, with the help of a $5,000 state grant. It will offer a program to ease a
child's transition back to school or day care. Leo returned to his second-grade
classroom in mid-October. Ideally, Peterson said, a therapist would have
accompanied him. Instead, several school staff members visited the center to
learn Peterson's methods. "His transition back into school went
awesome," Kristen said. "I was worried he was going to get there and
just fall apart. The minute he began to slip, they reacted quickly. I'm not
worried at all now."
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=283055
******************************
Operation Final Push
19,000 D.C.
Students Must Be Vaccinated By Jan. 25. But How?
By Suz Redfearn
Special to The Washington Post
Tuesday, January 15, 2002; Page HE01 Nineteen thousand needles. 19,000 arms. 10
days. That's the raw numerical challenge facing D.C. health officials, who have
pledged to vaccinate all unimmunized D.C. public school students in that time.
Come Friday, Jan. 25, the D.C. School Board says, any child who doesn't have
proof of having had the necessary immunizations (and the annual tuberculosis
test required of all D.C. school kids) will be "excluded" from
school.The vaccines, a battery of shots similar to those required by most
school systems nationwide, are necessary to reduce health risk to individual
students and prevent the spread of communicable diseases, officials say,
including polio, tetanus, rubella, whooping cough, haemophilus influenza type b
(the bacteria that can cause meningitis), chicken pox, mumps and hepatitis B.To
get all the kids stuck with the proper needles by the deadline, the school
system has partnered with the D.C. Department of Health (DOH) in an
extraordinary community effort, which as of today has taken on the name
"Operation Final Push." They'll have to vaccinate kids at the rate of
about 1,900 a day -- or 190 per hour in a 10-hour work day, every day -- to do
it. The shots and paperwork -- multiple needles may be involved, depending on
which vaccinations the child has had already -- take about 15 minutes per child
to complete. All immunizations are administered in the upper arm.District
officials don't have precise demographics about the unimmunized children, but
they know something about them. A majority are in high school, and four high
schools in particular -- Wilson, Dunbar, Ballou and Eastern -- have unusually
high numbers. At the beginning of the campaign, Pannell said, Wards 4 (east of
Rock Creek Park to the border with Silver Spring, mostly in Northwest) and Ward
5 (around Catholic University, mostly in Northeast) each had 39 percent of kids
out of compliance, the highest unvaccinated percentages among the city's wards.
Assembling more detailed demographic information -- such as whether households
where English is a second language are more affected -- "would require
more data than we have even begun to build up," said Jack Pannell, deputy
director of external affairs for the city health department.
A Grand Plan
With 10 days to go, Final Push is still in development. Pannell says he's tried
to approach the task like an "advertising campaign." He hopes to line
up radio stations to sponsor a contest where the school producing the most
newly immunized kids wins. He wants a radio station to do live broadcasts from
schools in Wards 4 and 5, local morning TV news programs to host DOH officials
as the deadline nears and even a free movie ticket giveaway to kids who comply.
None of these plans had been confirmed as of yesterday. The District also needs
to make the shots themselves easily available. The Department of Health has
lined up more than two dozen locations (some served by mobile units) where
vaccinations are offered at various times and days [see "Free Immunization
Opportunities for Children in D.C. Schools" at right]. Some are in
schools, some in clinics or other health care facilities. It has also arranged
for mobile immunization vans to be parked near churches and shopping areas on
weekends preceding Jan. 25. "We're still working to figure out where
people are on Saturdays," Pannell said. When they do, "we'll be
there."Parents and kids are free to see their own doctors for the
immunizations. The cost is typically that of the doctor's visit plus around
$200 (private insurance usually pays a large portion, as does Medicaid). But
the shots offered by the network of clinics, hospitals and service centers
arranged by the DOH are free. Many have extended their hours to accommodate
parents' work schedules.Most clinics are participants in the D.C. Healthcare
Alliance, a coalition of hospitals, agencies and insurers formed after the
closing of D.C. General Hospital in order to deliver care to the poor and
uninsured. The alliance, led by Greater Southeast Community Hospital, includes
George Washington University Hospital, Children's Hospital, Unity Healthcare
Inc., which oversees all community clinics in the District and D.C. Chartered
Health Plan, a Medicaid HMO.Getting clinics to agree to extend hours has not
been a problem, but staffing and overtime issues loom. Some immunization
providers have decided to bear the extra costs themselves. Joseph Wright, who's
overseeing Children's Hospital's participation in the vaccination campaign,
says Children's will pick up the tab for overtime at its clinics. (Children's
is operating a vaccination clinic in the building formerly used by D.C.
General; see box for details.) It will also pick up the tab for overtime by
school nurses, all of whom are authorized to administer the vaccinations. (As
part of its contract with the D.C. Healthcare Alliance, Children's functions as
the employer of school nurses in the District.)The community health clinics
around town are already crowded, at least sporadically. The DOH's Division of
Immunization clinic on Spring Road in Northwest Washington was teeming with
kids and parents around lunch time on Jan. 7. DOH workers scrambled to process
everyone. People filled about 20 chairs and another 10 stood leaning against
walls in the hallway that served as a waiting room. When systems are operating
smoothly, it takes no longer than 15 minutes to vaccinate and administer
paperwork, but when crowds overwhelm staff, the wait can be long. (The
following day the same clinic was nearly deserted when visited mid-day by our
photographer). Wright said the clinics under Children's Hospital's purview
aren't jammed yet, but they have been getting four to five phone calls per
hour. "This portends a lot of activity in the last week leading up to
January 25," he said. He says the clinics have handled such volume before
-- "though usually in the summer right before school starts."
Is This Really Necessary?
Some question the necessity of the mass-vaccination effort. Melvin Gerald, a
family practitioner who has four offices in the District and one in Prince
George's County, says he thinks about half of the 21,000 have already been
immunized but don't have their paperwork to prove it. The zero-tolerance sweep
through the school population "is not in the best interest of the
children," Gerald said. (But Gerald, along with most others contacted for
this report, does not believe re-vaccination, if it occurs, would be dangerous
to most children).When the federal government provided free vaccines to the
District in the mid-90s, he said, kids flooded the clinics and some overwhelmed
providers didn't do the paperwork correctly, failing to send copies to the
city's Division of Immunization. To avoid such problems again, Gerald says, the
city should set up a centralized database into which each clinic and practitioner
could record immunizations. (Such a database exists, but it is not used by
enough doctors or clinics to make it the single-source immunization list the
city needs.)Others worry that kids are being herded into clinics and immunized
en masse, with no regard for their individual health records. Barbara Loe
Fisher, president of the National Vaccine Information Center -- a non-profit
watchdog group founded by parents who believe their children were harmed by
vaccines -- says the District's campaign could pose a danger to children who
might have bad reactions to vaccines."This needs to be individualized
instead of putting people up against a wall like this," Fisher said.
"Every child is not the same." She suggested the District give parents
more time to take their kids to a primary care provider for vaccination. That
way, a medical history could be taken, if the doctor doesn't have it already,
and the child could be closely watched for any reactions.Faced with inoculating
kids with each vaccine required by D.C., many private doctors would opt to
spread the shots over a few visits, said Joseph Wright of Children's, who is an
emergency room physician. That's because of expected mild side effects like
low-grade fever. But the District prefers to do it all in one sitting -- and
with good reason, said Wright."If you've got a cohort of kids who are out
of compliance, you take advantage of the opportunity to bring them into
compliance when you can," Wright said. "That's public health common
sense."
To Read The Rest Of the story:
http://www.washingtonpost.com/wp-dyn/articles/A45663-2002Jan14.html
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