AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday January 15, 2002
INDEX:
* Leave No Child Behind by
Sen. Chuck Grassley, of Iowa
* Deaf Talkabout A Shot In The Dark Or A Guard Against Deafness
* MMR Vaccine Letter From Dr. Richard Nicholson
* Day 2: Some parents give up custody to ensure mental-health
care
* Family's trust in system went unrewarded
******************************
Leave No Child Behind by Sen. Chuck Grassley, of
Iowa
Iowa public schools have earned
a national reputation for educational
excellence. Appropriately, Iowa educators, parents and administrators take
pride in their hometown schools. And particularly in rural areas, where the
public school often defines a community and in some cases helps anchor the
local economy, setting and meeting high academic standards has long been the
rule rather than the exception. By offering a first class education and
expecting high student achievement, Iowa public schools work hard to stay
accountable to parents, taxpayers and the students they serve.
However, it would be a mistake to suggest there is no room
for improvement. Complacency can lead to mediocrity or worse. And a newly
signed national education policy ought to help local schools in Iowa improve
their already high student performance levels by giving them greater
flexibility to allocate federal resources to meet the unique needs of their
districts.
Since 1965 with the enactment of the federal Elementary and
Secondary Education Act, the federal government has poured more than $130
billion into the K-12 public education system. Despite 35 years of financial
help from the Federal Treasury, achievement gaps loom large on a national level
among rural, urban, and suburban areas; minority and immigrant populations; and
affluent and low-income school districts. Especially among disadvantaged
populations,long-overdue improvements in national education policy are
necessary to give every child in America the opportunity to learn. Taxpayers
should be able to expect their hard-earned money is teaching students to read,
write, add and subtract. Shuffling kids through the system cheats
under-achievers from reaching their full potential and does a disservice to
society in the long run.
After making education reform his number-one domestic
priority during the presidential campaign of 2000, President Bush is making
good on his pledge to 'leave no child behind' in the public education system.
In January, the president signed into law a sweeping overhaul of federal
education policy that will give extraordinary flexibility to local school
districts to target and improve student achievement and proficiency in the
basics. Students enrolled in chronically deficient schools may qualify for
tutoring, after school services or summer school programs and have the option
of transferring to another public or charter school.
The bipartisan “No Child Left Behind Act” substantially
increases the
federal investment and financial commitment to the public school system,
spending $26.5 billion nationwide in 2002. Iowa can expect approximately $389
million in federal education dollars this year, almost $43 million more than
last year.
The new education laws cut through layers of red tape to allow
local school districts to spend money where it works. Local school board
members, principals and educators know where resources are needed most to help
boost student achievement. School administrators can get the most bang for the
taxpayer’s buck because they know better than a bureaucrat in the federal
education department whether their school needs more help in recruiting and
retaining good teachers, offering assistance with professional development,
beefing up technology, or setting up English proficiency programs.
And for the first time, rural schools with much smaller
enrollments than their suburban and urban counterparts will have the
opportunity to pool federal resources that may not have added up to much under
a per-pupil federal formula and spend the money to meet specific educational
challenges in their individual districts.
In addition to greater local control and spending
flexibility, the new
policy changes will empower parents and taxpayers to obtain information about
student achievement and teacher qualifications. Under the new federal education
act, every public school in the country is required to test students in grades
3-8 to assess literacy and math skills by the 2005-2006 academic year. Each
school will need to issue an annual report card on their schools’ progress
toward achieving and improving student proficiency in the basics year after
year.
The “Leave No Child Behind Act” will take unprecedented steps
to bridge the growing divide between disadvantaged students and their peers.
Iowa stands to gain from the increase in federal education dollars coming in to
our schools.
And what’s even better, the local school districts will have more say over how
to spend those extra dollars without jumping through hoops to get permission
from Washington on how best to teach every child in an Iowa classroom how to
learn.
107-38-02
******************************
Deaf Talkabout A Shot In The Dark Or A Guard
Against Deafness?
[By Bob
Mccullough:Featureseditor@Belfasttelegraph.Co.Uk]
Tony Blair still refuses to say if his baby son
has had the MMR jab
and, with the public not yet convinced of the triple vaccines safety,
take-up for the jab has fallen to 77% - well below the Government target of
95%, and health chiefs are warning of a killer outbreak of measles - or
possibly also of mumps and rubella.
I got measles as a boy and can still remember
being put to bed in a
darkened room and not being allowed to read.
Nearly everybody got measles in those days and acquired natural immunity.
But, because of its mild reputation, measles was not always taken seriously
and yet, as well as being potentially fatal, measles can cause deafness and
even blindness.
My wife was a schoolgirl of five when she went
down with mumps and
lost her hearing. But the real culprit over the years has been German
measles or rubella, as it is commonly known.
Rubella is a seemingly mild illness which can
have devastating results
if a woman catches it during the first months of pregnancy, and the baby may
be born deaf, blind or with a combination of serious mental problems.
+ Article continues at:
http://globalarchive.ft.com/globalarchive/article.html?id=020111005345&query
=mmr#docAnchor020111005345
*****************************
MMR Vaccine Letter From Dr. Richard Nicholson
Sir, There is a
particular hypocrisy in ministers using the shield of
medical confidentiality to avoid saying whether their children have had the
MMR vaccine (letters, December 28; January 2 and 5). Just before the general
election last May, they rushed through the Health and Social Care Act, which
effectively destroys medical confidentiality in the NHS. Section 60 gives
the Secretary of State power to have identifiable patient information
disclosed to whomever he wishes, if it is in the public interest.
+ Letter continues at:
http://www.thetimes.co.uk/article/0,,59-2002017995,00.html
*****************************
Family's trust in system went unrewarded
BY JEREMY OLSON
WORLD-HERALD STAFF WRITER
After what Pat went through to get his son into intensive psychiatric
treatment, he couldn't believe that Ian was being released in only eight weeks.
That's a month less than the juvenile judge had recommended for the psychotic
youth.
Pat took a drastic step to ensure that the cost of his son's
intensive treatment would be covered. Ian is making slow progress, but his
parents feel cheated by the system.
ValueOptions, the Medicaid insurance manager for mental health in Nebraska,
decided Ian no longer needed such expensive inpatient care in the state's
Lincoln Regional Center. The insurer said it would pay instead for the
17-year-old to take part in a day-counseling program. So he was sent home to La
Vista. The move was a disaster. After two sessions, the counselor asked Ian's
parents not to send him back. He was scaring other participants because he was
so delusional. He often believed he was a prophet and tried to save people by
blessing them. At home, he threatened to kill his parents one moment, then
spent hours glued to religious television programming. He would drift silently
around the La Vista area for hours, and then talk angrily about government
conspiracies and the CIA. His parents tried to get him into an alternative
school, but his mother could see the anxiety in his eyes when she picked him up
after the first day. Ian shoved his dad through a kitchen wall that evening
when pressed about going back the next day. Two months later, his parents took
him to the Richard Young Center in Omaha to re-evaluate his condition and
medications. That's where they took him in the first place. Now it seemed as if
they were starting over. This is a family whose trust in the system went
unrewarded. Their story is one of many offered by parents and parent advocates
as an indication that ValueOptions cut back too far in its efforts to save the
state money, an allegation the company has denied. The state took back financial
control and decision-making authority over this Medicaid program at the start
of the year. But it's unclear whether this sort of dilemma will fade because
the state will use the same pot of money that ValueOptions found insufficient.
Ian had changed dramatically sometime between his 14th and 16th birthdays. He
went from a fun, soccer-loving kid who worked to make decent grades to a high
school dropout who drank, used drugs and hung out late at night with a rough
crowd. His parents' suspicions of a mental disorder were confirmed near
Christmas 1998 when Ian couldn't sleep for 72 hours. He hid in the attic
because he believed the house was bugged. He would close his eyes, only to be
tormented by rapid bursts of images and memories. "Help me, Dad," he
begged. "Make it stop." When it became clear the family's private
insurance wouldn't cover intensive treatment, Pat took a drastic step. A buddy
of his who was a probation officer said if Ian was arrested, juvenile
authorities would see that he needed help, make him a state ward and pay for
his care. So Pat goaded his unstable son about his friends and his lifestyle.
It played out just the way Pat figured. Ian punched him in the head. Then Pat
had his own son arrested. Surrendering custody was hard on Ian and his parents.
But Pat and his wife, Janet, saw no option and trusted the juvenile court
system to treat Ian well. They weren't the only ones upset when Ian returned
home one month early, with the same delusions and paranoid thoughts that got
him placed in the regional center. Stefanie Sellers, Ian's state caseworker,
told the court that she found it "hard to believe" that ValueOptions
and regional center staff didn't notice Ian's symptoms when they released him.
"I have been very dissatisfied," she wrote in her report, "with
the level of treatment and cooperation with LRC (Lincoln Regional Center) and
Options." During the year after the regional center released Ian, he was
taken to psychiatric hospitals seven times. His doctors changed often, as did
his diagnoses - from racing mind to post-traumatic stress disorder, then
bipolar disorder, then schizoaffective disorder, then paranoid schizophrenia.
With each diagnosis came changes in medications and disturbing side effects.
One drug caused his fingers and toes to curl up. When his parents complained,
the doctor took him off the drug entirely rather than gradually weaning him.
Ian vomited for two weeks and then had a psychotic episode that sent him back
to Richard Young. Ian's parents and court-ordered supervisors received little
information from his psychiatrists, to the point that a judge subpoenaed the
doctors to explain what they were doing. Eventually, the Sarpy County Juvenile
Court ordered Ian back to the regional center, where his parents had wanted him
kept a year earlier. This time the center refused to take him, his family said,
because he was too close to turning 19, when he would be too old for treatment
under Nebraska's juvenile health system. After Ian's birthday, Pat and Janet
had him committed and confined to an adult psychiatric ward. Now he's at the
Norfolk Regional Center, undergoing similar therapies and medications he
started as a juvenile. While happy their son is making slow progress, Pat and
Janet feel cheated. The promise of Ian the 14-year-old did not turn into the
reality of Ian the 19-year-old. "It seemed like a lot of his care was
determined by finances," Pat said, "which is not the way it should
be."
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=281003
******************************
Day
2: Some parents give up custody to ensure mental-health care
BY JEREMY OLSON AND JOE KOLMAN
COPYRIGHT © 2002 OMAHA WORLD-HERALD
RELATED STORIES
Your
Newspaper: Series investigates mental health system 
Day
1: In the hands of a system needing help of its own 
Models
for change, Day 2 
Drew's
story, Part 2: From treatment center to juvenile jail and back 
Glossary
of terms, Day 2 
Working families in Nebraska and Iowa are pressured to make the ultimate
sacrifice when their children need mental-health care: giving them away. Their
private insurance doesn't adequately cover the recommended treatment. They're
not poor enough for public aid. But they're not wealthy enough to pay for
treatment that can cost twice as much as a year at Harvard. So the state steps
in, taking over custody and enrolling the children in the same public-aid
programs the parents couldn't obtain on their own. Not all children with a
mental illness require such expensive treatment. But one in four families of
mentally ill children was told it might have to give up custody, according to a
1999 survey by the National Alliance for the Mentally Ill. One in five survey
respondents actually did it. Such parents not only endure guilt and shame, they
lose the authority to oversee their children's care and often wind up paying
child support to the state. Families drift apart. Children feel abandoned.
"You're creating a lot of grief and loss and depression," said Mary
Jo Thompson, a coordinator of Alegent Health's behavioral health services in
Omaha. "Things get worse before they get better." Such family
hardships have prompted 11 states to ban this form of custody relinquishment.
Nebraska and Iowa, on the other hand, were among states criticized for its
frequent use in two recent national reports. Federally funded researchers
reviewing Nebraska's public mental-health system in 1999 called the practice
"rampant." Nebraska wards with mental disorders
Illness Number of wards %
Depressive
714
15.3
Oppositional defiant
687
14.7
Conduct
615
13.2
Attention deficit/disruptive behavior
606
13.0
Anxiety
521
11.2
Substance abuse related
450
9.6
Adjustment
372
8.0
Bipolar /mood
169
3.6
Impulse control
138
3.0
Attachment
98
2.1
Personality
96
2.1
Psychoses
62
1.3
Eating
13
0.3
The ward system was designed to help abused or neglected children, not to bail
out families who can't afford health care. State officials haven't counted how
many of the 7,600 Nebraska wards or 10,200 Iowa wards the practice
involves. Iowa's 4th Judicial District, which includes Pottawattamie County,
did its own count. About 15 percent of the cases referred to county attorneys
for action in the nine-county district in the last 18 months involved children
whose parents could not provide for necessary mental-health treatment. Those
108 cases nearly equaled the number involving physical or sexual abuse. States
fell back on custody relinquishment over the past two decades as a makeshift
way to help families whose insurance wouldn't cover children's expensive
inpatient care, mainly for severe mental illness, and who didn't meet
low-income guidelines for public aid. It's an expensive responsibility.
Nebraska's Medicaid managed-care program now spends $400 to $500 a month per
ward on mental-health care. The total cost last year exceeded $35.6 million in
state and federal tax dollars. No state leaders or caregivers defend the
practice, but they say the alternative right now is leaving these families and
their children with no access to care at all. "Thank God it's an option,
albeit the least plausible one we'd like to have," said Tom McBride, director
of Epworth Village, a treatment center in York, Neb. The Bazelon Center for
Mental Health Law in Washington, D.C., studied the issue in 2000. It listed
Nebraska and Iowa among six states in which custody relinquishment occurs most
frequently. In part, that's because both states place a lower lid on income
levels than other states for acceptance into Medicaid. Other states have
loosened Medicaid eligibility requirements or created financial or treatment
programs to deal with these children. Rather than tackling the problem,
Nebraska officials seem to have accepted it, said a 1999 report by Dr. Ira
Lourie, a child psychiatrist at Georgetown University in Washington, D.C. As a
consultant, Lourie helped develop the Health Care Tracking Project, which studied
mental-health systems nationwide. The project concluded in 1999 that the
practice had increased in Nebraska since 1995, when the state privatized its
Medicaid mental-health program. Once children are wards, state and juvenile
court authorities decide what level of treatment is appropriate, where they
live and how often they can visit their families. The family home is a
placement option for the court, but the child's treatment needs often make that
impractical. Parents are sometimes consulted but no longer make decisions, even
when they must pay child support to the state. Caseworkers try to keep parents
informed but don't always have the time when they have 20 to 30 cases to
juggle. The ward issue reflects a mental-health system that advocates say is too
reactive and lacks the tools to address early signs of trouble. Cindy Koester
of Sidney, Neb., sought help in fall 2000 for her depressed 12-year-old because
she couldn't afford to keep him on her private insurance policy. She was told
state aid would be available only if she made him a ward. She declined to do
that, so treatment was delayed. "I didn't want to give up on my kid,"
she said. One month later, a sheriff's deputy carried him out of school
kicking, screaming and threatening to shoot himself. This time a judge made the
decision, taking him into state custody for his own safety. Last year, Nebraska
began trying to count the custody relinquishment cases. Once state leaders are
more aware of the frequency, they can find ways to deal with the issue, said
Carolyn Theile, a state protection and safety administrator in Omaha. One idea
is to train certain caseworkers to specialize in handling such wardship cases
and be attuned to the children's unique needs. Eliminating this wardship
practice will take the cooperation of the courts, caregivers and others. The
Bazelon report found that judges nationally overuse wardship, thinking it
obliges a state to take better care of children. Nebraska judges interviewed
acknowledged that is part of their rationale. That doesn't make it any
easier, though. "You don't like to see it," said Judge Larry Gendler
of the Sarpy County Juvenile Court. "You never want to strip parents of
their dignity and make them come to court to obtain services they can't obtain
on their own." Admissions practices by Nebraska and Iowa mental-health
providers also encourage wardship. Some accept mostly or only state wards
because they believe the state is more likely to fully fund their care.
"Unless they are wards of the state, there is no guarantee of
reimbursement," said Jeanett Spect, who runs an Omaha foster-care program
for children who need treatment. A Lincoln advocate for parents dealing with
childhood mental illness is one of the few Nebraska parents who obtained
Medicaid coverage for her mentally ill child without relinquishing custody. Her
family's case proves it can be done, although not easily and she declined to be
named for fear she would lose the coverage. She and her husband applied for
Medicaid even though they didn't meet the financial requirements. They were
approved after appealing five times. Each year, she must write down a lengthy,
detailed description of her son's problems in order to justify continued
Medicaid coverage. But she feels more comfortable having a stronger say in
decisions regarding his therapy or medication. "The system finds it a
whole lot more convenient if they have one of their workers making the
treatment decisions," she said. "Parents tend to insist on more
individualized care."
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=281089
******************************
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