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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Sunday, December 2, 2001
INDEX:
* Special Education Increases Cut From Bill
* Katie
Beckett Program : Wisconsin
* Fragile X Treatment a Possibility
* U.
Pittsburgh student volunteers learn with autistic girl
* U.
Alabama professors develop computer games to help detect autism
* Former
First Lady Calls For System To Address
Children's Mental Health Needs
* Mental
health chief warns of budget cuts' toll
* How
your money can change young lives
* Website
for the Association of Regional Center Agencies
* San
Diego Marathon, North County Chapter
******************************
Special Education Increases Cut
From Bill
By LIZETTE ALVAREZ
In
Depth
Congress
ASHINGTON,
Nov. 30 — Cutting to the heart of the debate over school financing, lawmakers
today rejected an attempt to guarantee multibillion dollar increases for
special education as part of a sweeping education bill.House negotiators who
are working to draft a compromise on the bill voted to strip the
special-education increases, which had been included in the version passed by
the Senate, arguing that it would create an expensive entitlement without
addressing the deep-seated problems in the special education system.The vote to
reject the amendment could complicate prospects for passing the bill this
year."Before we lock it in as an automatic, autopilot spending program, we
need to have some reform," said Senator Jeff Sessions, Republican of
Alabama.Democrats immediately said they would reconsider their options next
week, including offering a compromise on the provision.A 1975 law, the
Individuals with Disabilities Education Act, committed the federal government
to paying 40 percent of the cost of educating students with special needs, with
the rest provided by state and local sources. This year, Congress allocated
about $6 billion, or 16 percent of the cost. The measure stripped from the bill
today would have forced Congress to add $2.5 billion a year for the next 10
years.House Republicans on the conference committee said Congress would be
taking a careful look at the program next year, when it expires, and action
should be postponed until then. They also pointed out that Congress has substantially
increased spending under the act over the last five years, when Republicans
controlled both houses of Congress. This year, President Bush asked for $1
billion more for the program and House appropriators increased the sum to $1.4
billion.The education bill, which Mr. Bush considers a priority, seeks to hold
schools, particularly those with low- income children, more accountable for
failing to teach students."We all know the current program isn't
working," said Representative John A. Boehner, an Ohio Republican who is
chairman of the House Education Committee. "It overidentifies children. It
overidentifies minority children and has been exploding in its costs and
complexity because of court cases. We must take a good look at this program."But
supporters of the provision, which was sponsored by Senator Tom Harkin,
Democrat of Iowa, and Chuck Hagel, Republican of Nebraska, criticized Congress
for failing for 26 years to live up to its promise to pay states 40 percent of
special education costs. The Senate bill would have made the increases
mandatory, not discretionary.The special education program was created, and
affirmed by the United States Supreme Court, after it was discovered that many
children were being excluded from public schools because of their
handicaps.Despite the shortfall from the federal government, special education
students do not get short-changed financially, mostly because states and
districts are obligated to pay those costs. But other students — including the
poor and the gifted — lose out because there is less money left for them,
senators said. It costs much more to educate the nation's six million special
needs students than the rest of the population."We have set up a
competition between disabled children, poor children and gifted children,"
said Representative George Miller of California, the senior Democrat on the
House Education Committee. "In every school district that's
happening."Without this money, Mr. Miller said, the education improvements
Mr. Bush seeks would fail. "We can't do it if we leave a big sinkhole in
special education," Mr. Miller said.
http://www.nytimes.com/2001/12/01/education/01EDUC.html?todaysheadlines
*****************************
Katie Beckett Program :
Wisconsin
Purpose of the Program The Katie Beckett
Program is a special eligibility process that allows certain children with long
term disabilities or complex medical needs, living at home
with their families, to obtain a Wisconsin Medicaid card.
Children who are not eligible for other Medicaid programs because the income or
assets of their parents are too high, may be eligible for Medicaid through the
Katie Beckett Program, if they meet all the following eligibility criteria:
The child is
under 19 years of age and determined to be disabled by standards in the Social
Security Act;
Requires a level of care at home that is typically provided in a hospital or
nursing facility;
Can be provided safe and appropriate care in the family home;
As an individual, does not have income or assets in his or her name in excess
of the current standards for a child living in an institution; and
Does not incur a cost at home to the Medicaid Program that exceeds the cost
Medicaid would pay if the child were in an institution.
Program Benefits
How to Apply
Katie Beckett Program
http://www.dhfs.state.wi.us/bdds/kbp.htm
******************************
Fragile X Treatment a
Possibility
United Press International
Novenber 29, 2001
SALT LAKE CITY, Nov 29, 2001 (United Press International via COMTEX) -- The
most common inherited form of mental retardation, Fragile X disease, is not too
complex to be treated, research released Thursday said. This discovery,
published in the Nov. 30 issue of the journal Cell, indicates the source of the
disease -- much simpler than previously believed -- is nerve defects caused by
the interaction of only two genes. "Fragile X syndrome causes profound
mental retardation in at least 100,000 Americans," Kendal Broadie, co-researcher
and assistant professor of biology at the University of Utah in Salt Lake City,
told United Press International. "The cognitive defect is caused by
improper development of synaptic connections -- the communication links through
which information flows between nerve cells," he said. "All previous
work has suggested that the cause of Fragile X syndrome is complex -- the
incorrect regulation of many hundreds of proteins in nerve cells -- certainly
too complex to offer hope of an effective treatment in the foreseeable
future." Broadie said the new research suggests "misregulation of
only a single protein may cause most or all of the brain defects in Fragile X
syndrome."
To Read The Whole Story:
BrainConnection
- The Brain and Learning
http://www.brainconnection.com/SITEWare/2001/11/29/up/0000-0126-bc-us-fragilex.php3
******************************
U. Pittsburgh student
volunteers learn with autistic girl
By Susanna Forlano
The Pitt News
U. Pittsburgh
(U-WIRE) PITTSBURGH -- Charlotte Savage is a 6-year-old girl. She likes to play
with her sisters, read books and watch "Winnie the Pooh," but she has
gone through much more than a normal 6-year-old -- Charlotte is autistic.
Elizabeth and Kirk Savage first learned of their daughter's disability when
Charlotte was 3 years old. "Her speech and social skills weren't
developing normally for a 3-year-old," Kirk Savage said. Though
Charlotte's disability was not properly diagnosed until she was 5 years old,
the Savages did not waste time to help Charlotte improve. Within six months of
her third birthday, Charlotte underwent an intense learning program. In order
to continue aiding their daughter, the Savages looked for outside help in the
form of volunteers. The Savages made their opportunity known by asking
University of Pittsburgh's Student Volunteer Outreach and the psychology
department to advertise their request. The Savages also have volunteers from
other universities, but most of their helpers are Pitt students. Right now
there are seven volunteers, five of whom are from Pitt. Senior Becky Goldman
has volunteered for two semesters. She found out about Charlotte through the
psychology department.
To Read The Full Story:
U. Pittsburgh
student volunteers learn with autistic girl
http://news.excite.com/news/uw/011128/university-170
******************************
U. Alabama professors develop
computer games to help detect autism
By Lexie Lloyd
The Crimson White
U. Alabama
(U-WIRE)
TUSCALOOSA, Ala. -- Two University of Alabama professors in the psychology
department have developed an interactive computer game to help detect autism in
mentally retarded children ages five to 18. Mark Klinger, cognitive
psychologist and professor at the University, and his wife, Laura Klinger,
child clinical psychologist, have developed these computer games to test
autistic children's implicit learning skills, which deal with the intuitive
thought process. Autism is a neurological disorder that is often genetic.
Social function, language and repetitive behaviors are the three areas most
affected by the disorder. About 75 percent of autistic individuals suffer some
degree of mental retardation. "Autism is a condition that affects the
social understanding and language communication skills," Mark Klinger
said. "Social and language skills are more rigid in people diagnosed with
autism." The games provide tasks that involve classifying objects or
animal-like creatures by an intuitive understanding of unstated complex rules.
Most children easily can classify these similar objects based on these unstated
characteristics, but children with autism usually have a difficult time.
Another task included in the games deals with patterns of shapes and tests for
artificial grammar learning skills. The patterns are unstated, but most
children can select the group that follows the pattern. "Without this
ability to categorize new information based on previous experience, a child
would view each new situation as something completely unique and may become
overwhelmed by the complexity of the environment," Laura Klinger said.
These computer tasks could lead ultimately to understanding the fundamental
differences in how autistic children think. It also could help to detect what
part of the brain is affected by the disorder.
To Read The Full Stiry:
U. Alabama
professors develop computer games to help detect autism
http://news.excite.com/news/uw/011128/health-269
******************************
Former First Lady Calls For
System To Address
Children's Mental Health Needs
U.S.Newswire, 11/27/2001 16:44 To: National Desk Contact: Deanna Congileo of The Carter
Center, 404-420-5108 ATLANTA, Nov. 27 /U.S. Newswire/ -- Former First Lady
Rosalynn Carter is calling on parents, teachers, and health care providers to
address a ''national crisis'' in children's mental health. ''Parents, other
family members, and teachers often miss the warning signs of mental illness,
and doctors fail to adequately diagnose mental illness in children,'' said Mrs.
Carter. ''Concern about this has heightened with the anxiety teachers and
parents are seeing since the Sept. 11 attack, but youth always have suffered
due to a failure to diagnose these illnesses.'' At the 17th Annual Rosalynn
Carter Mental Health Symposium, Mrs. Carter recently convened some 200 mental
heath experts to assess ways the nation's health care system can better
diagnose and treat children's mental illnesses. Their ideas will contribute to
the work of a federal task force charged with identifying the key indicators of
mental illness in children and adolescents. ''Mental health leaders at the
symposium agreed the situation has not improved since the September 2000
Surgeon General's Conference on Children's Mental Health called the burden of
suffering experienced by children with mental health needs and their families a
'national crisis','' said Greg Fricchione, M.D., director of The Carter Center
Mental Health Program. ''This month, leaders agreed on a clear need to address
the crippling fragmentation of services that exists,'' Dr. Fricchione said.
''They also said we can benefit greatly from a consensus list of practical,
easily understood physical and behavioral indicators or signs in children who
are in need of evaluation and support.'' Parents and adolescents, as well as
teachers in schools, officers in the criminal justice system, doctors in the
primary care health system, and mental health providers are being consulted in
a collective public health effort that ultimately should improve early
intervention in the development of children's mental and emotional problems.
According to Dr. Dan Offord, director of the Canadian Center for Studies of
Children at Risk, reports show that one in 10 children and adolescents have
some significant degree of mental health impairment, but only one in five
receive specialty mental health services in any given year. Symposium
participant Brandon Fletcher, a 15-year-old diagnosed with bipolar and anxiety
disorder at age 12, said during a panel discussion, ''Before I was properly
diagnosed, I had been on 20 different medications and had seen at least 10
doctors. I also had tried to kill myself. I can only hope that in the future,
warning signs of mental illness in kids will be readily detected so that others
and their families will not suffer needlessly.'' ''Childhood is the most
important stage of emotional and cognitive development,'' said Mrs. Carter.
''We must listen to what youth have to say about their own mental health needs.
A big part of the answer is including them in the process. The light each of
them can shed on possible solutions is invaluable.'' KEYWORDS: HEALTH, YOUTH
http://www.usnewswire.com
Boston.com
/ Latest News / Washington / Former First Lady Calls For System To Address Children's
Mental Health Needs
http://www.boston.com/dailynews/331/wash/_Former_First_Lady_Calls_For_S:.shtml
******************************
Mental health chief warns of
budget cuts' toll
By Alice Dembner and Rick Klein, Globe Staff, 11/28/2001
undreds
of mentally ill patients will be evicted from group homes and the state may be
forced to close a psychiatric hospital if budget cuts approved last week by the
Legislature are not reversed, the state's mental health commissioner said
yesterday.
The nearly $30 million in cuts would eliminate 14 percent of the beds in
the Department of Mental Health's psychiatric wards, 11 percent of residential
beds for children, and 5 percent of beds in group homes for adults, all of
which are currently filled and have long waiting lists, said Commissioner
Marylou Sudders.''This budget creates holes in the safety net for some of our
most vulnerable citizens,'' she said. ''In some cases, we will not be able to
provide the kind of services that will help people eventually recover from
their illnesses.''
To Read The Full Story:
Boston
Globe Online / Metro | Region / Mental health chief warns of budget cuts' toll
http://www.boston.com/dailyglobe2/332/metro/Mental_health_chief_warns_of_budget_cuts_toll+.shtml
******************************
NAMI Says a Few Congressional Leaders Will Decide Mental
Health
P.R.Newswire, 11/28/2001 17:18
Parity: Discrimination That Can Kill ARLINGTON, Va., Nov. 28 /PRNewswire/ --
On the eve of a news conference with former First Lady Rosalyn Carter at the
U.S. Capitol (Nov. 29 at 11 a.m.), the National Alliance for the Mentally Ill
(NAMI)) says that the fate of legislation strengthening health insurance parity
for mental illnesses lies in the hands of only a few key leaders in the House
of Representatives. "It will be unconscionable if House leaders kill this
bill," said Richard C. Birkel, Ph.D., executive director of the National
Alliance for the Mentally Ill (NAMI). "The issue is not just about health
care. It's about the kind of stigma and discrimination that sometimes leads to
the deaths of innocent people." The U.S. Senate has passed S.543 as an
amendment to the Labor-HHS appropriations bill, which is now in conference. Introduced
by Senators Pete Domenici (R-NM) and Paul Wellstone (D-MN), two-thirds of the
full Senate has co-sponsored the measure. But some House leaders want to drop
the measure, preferring instead to pass an extension of a 1996 law which,
according to a U.S. General Accounting Office (GAO) report, most insurance
plans have evaded. The 1996 law expired October 1, 2001. "House leaders
potentially are setting up other House members for a mistake that will
back-fire on millions of Americans," Birkel said. "I am not sure they
realize the full implications of what they are doing, especially because
Members of Congress and other federal workers already have health insurance
with stronger parity. They and their families already are covered." Birkel
noted that President George W. Bush has committed to ending discrimination
against people with disabilities. In 1997, Bush signed into law a Texas parity
bill. In her memoirs, former First Lady Barbara Bush also described her
experience with depression and encouraged people in need to seek treatment.
NAMI's Website homepage features a photograph of Bush signing the Texas law.
NAMI noted that the U.S. Surgeon General has warned that almost all suicides
are the result of mental illness, constituting the third-leading cause of death
for people 15 to 24. Yet fewer than 20 percent of children and teenagers with
mental illnesses get the treatment they need. Since September 11th, insurance
coverage for mental illness has become even more urgent a concern, with 70
percent of Americans experiencing symptoms of depression, anxiety, or
post-traumatic stress disorder. At a Senate hearing, experts testified that
children especially are at risk of developing problems well into the future.
"Killing this bill would be the moral equivalent of shooting our
wounded," Birkel declared. "Americans don't leave their most
vulnerable members behind. No procedural rationale or inflated cost estimate
will be able to excuse it. Congress should not adjourn without insisting on the
Senate provisions." NAMI listed the key House leaders on the issue as
Speaker Dennis Hastert (R-IL), Majority Leader Dick Armey (R-TX), Majority Whip
Tom DeLay (R-TX), Billy Tauzin (R-LA), Bill Thomas (R-CA), John Boehner
(R-Ohio), Ralph Regula (R-OH), Bill Young (R-FL), Minority Leader Dick Gephardt
(D-MO), Minority Whip David Bonior (D-MI), Charles Rangel (D-NY), John Dingell
(D-NY), George Miller (D-CA), and David Obey (D-WI).
Boston.com
/ Latest News / Washington / NAMI Says a Few Congressional Leaders Will Decide
Mental Health
http://www.boston.com/dailynews/332/wash/_NAMI_Says_a_Few_Congressional:.shtml
******************************
How your money can change young
lives
BY HELEN RUMBELOW
TODAY The Times launches its Christmas appeal to raise funds for the
National Autistic Society to help it to give children with autism the tools
they need to break out of their isolated lives. It is not uncommon for a child
to wait ten years for a diagnosis, which means that vital years of development,
where early intervention could have made a huge difference, are missed. Even
after diagnosis, demand for help, support and specialist education far
outstrips supply. The number of people with autism has risen almost tenfold in
the past ten years. Current estimates are that one in 100 have some kind of
autism: more than half a million people in Britain. Autism affects communication,
imagination and social interaction skills — those that are essential to every
aspect of our daily lives: work, leisure, relationships and family life. For
parents with an autistic child this can mean limited or no feedback: no cuddles
or eye-to-eye contact. Autism suffers from public misunderstanding in similar
ways to its sufferers. People with autistm may appear to be cold, and their
vision of life so different as to be almost unfathomable. The National Autistic
Society was founded by one desperate mother and a small group of like-minded
parents in 1962. The condition had only just been identified and the Sybil
Edgar School that they set up was the first in the world to be dedicated to
children with autism. Now 60,000 people a year are helped by the society’s six
specialist schools, a helpline, and an employment service. But Britain’s
foremost autism charity gets almost no public donations. Through decades of
trial and error the National Autistic Society schools have developed an
education system that shows clear benefits to the children fortunate enough to
attend them. They receive children who for years had been thought deliberately
naughty, dangerous or mentally ill. With specialist treatment, the improvement
is often remarkable. Money donated by Times readers will provide funds
for many kinds of equipment for children with autism. This includes the £30,000
needed for a sensory room at the Helen Allison School in Kent. These darkened
rooms, with a light floor and musical wall, have proved fascinating to
autistics. A second school, Radlett Lodge, in Hertfordshire, needs £7,500 for
computer software. Autistic children have a natural affinity to computers
because they show no emotion. Children with autism often sing even if they
cannot speak. The patterns of music can unlock communication for them. Daldorch
House school in Catrine, Ayrshire, needs £3,000 to buy instruments for a music
therapy room. Broomhayes school in Devon is seeking money for kitchens to teach
children how to cook. The Sybil Edgar School wants to upgrade its drab
playgrounds to encourage the children standing alone at break-time to play with
each other. At Christmases past Times readers have been extraordinarily
generous. Last year they raised £94,000 for Cancer Bacup and £102,000 for the
Royal Free Hospital research into neuroendocrine cancer. When Hurricane Mitch
tore out the heart of Central America three years ago, our readers contributed
more than £23,000 to pay for the building and transport of a new bridge. This
Christmas readers have the opportunity to build bridges of a different kind. To
donate, see the coupon.
The Times
http://www.thetimes.co.uk/article/0,,2-2001552801,00.html
******************************
The website for the
Association of Regional Center Agencies
for the state of California.
The mission of the Association of Regional Center Agencies is to represent the
autonomous regional centers in supporting and advancing the intent and mandate
of the Lanterman Developmental Disabilities Services Act.
The Association shall function as a leader and advocate in promoting the
continuing entitlement of citizens with developmental disabilities to all
services that enable full community inclusion. The Association shall also
participate in the development of public legislative policy and serve as a
focal point for communication, education, training and prevention services.
ARCA
http://www.arcanet.org/index.htm
******************************
San Diego Marathon--North
County Chapter
ASA
San Diego Marathon
Dear Friend of ASA:
The North County Chapter of the Autism Society of America is the
official charity of the San Diego Marathon. All of the proceeds will go
to
the North County Chapter of the ASA. I'd like to encourage everyone to
print it out and then begin asking friends, family and colleagues to help
support our Chapter. Any questions? Want to volunteer? Want to run? Call
Merryn at 760-479-1420.
The money raised this year from the marathon will be put into a
separate account and used to get our kids to camp. Our Chapter needs to form
a committee to help with this task. I need people to step forward and be
part of this committee. And I need some people very quickly!!! (I won't go
into the reasons why in this email, but I will definitely fill in those
people who contact me).
If this issue is one that you would like to work on, please contact Merryn
at 760-479-1420.
Thanks,
Merryn Affleck
President
North County Chapter, ASA
******************************
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