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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday December 25, 2001
INDEX:
* Merry Christmas Letter To Readers
* LA Times Associate
Editor Frank del Olmo's 'Daring to Dream of Frankie's
Future'
* Cash fury over jab experts
* First Session of the 107th Congress comes to a close --
Small victories for
families, but still a long way to go next session!
* Here is the legislation that was enacted this session that affects
children
and families:
******************************
Merry
Christmas And a Safe And Happy New Year!
Just a note to all of our readers! Thank-You for all your kind comments through
the holiday season! We hope you like our Daily Newsletter/ Newspaper on Autism
Related Issues. We try to keep them informative and interesting. In 2002 we
will be adding some new features to the newsletter, watch for updates.
Please Tell your friends about our newsletter and feel free to sign up your
online yahoo group address for subscription. Thank-You again and have a Merry
Christmas!
Staff Writers and Editor
******************************
LA
Times Associate Editor Frank del Olmo's 'Daring to Dream of Frankie's
Future'
This year I finally allowed myself to start
dreaming about my son's
future again.
Although Frankie continues to struggle against
the effects of autism,
a mysterious neurological disorder, his improvement has been so steady that
at times he seems a completely normal 9-year-old, right down to braces for
his teeth and a growing interest in video games and the latest cartoon
series (his favorite is "SpongeBob SquarePants").
I sometimes find myself musing about Frankie's
future not with the
concern and fear I often felt when he was first diagnosed with autism six
years ago. Now I can envision him achieving things once thought impossible
for all but the most exceptional autistic children. People with autism cope
with a complex brain disorder that interferes with their ability to process
stimuli like light, sound or touch. It affects one in 500 children,
according to public health statistics, and the incidence is rising. In
severe cases, victims are institutionalized. But even in its mildest form
autism interferes with the ability to learn and interact socially.
Despite his challenges, Frankie is now reading and doing math at
third-grade level, thanks to home schooling by my sister, Lisa Garcia, an
experienced Head Start teacher. While Aunt Lisa focuses on the education
basics, my wife, Magdalena, and I continue to seek new or innovative
therapies that will help Frankie prepare for his eventual return to the
classroom.
Recently, Frankie's therapists at the Center for
Autism and Related
Disorders in Encino have been trying to teach him to understand another
person's perspective, something most children learn naturally but that
people with autism must be taught. On the medical side, our pediatrician,
autism specialist Dr. Ricki Robinson, has Frankie in two therapies intended
to help his brain better process what he hears. She explains that Frankie's
problem is not that he can't hear certain things but that he hears
everything too well, so he sometimes isn't able to distinguish important
sounds from background noise and gets easily distracted.
One therapy Robinson has prescribed for Frankie
is Tomatis auditory
training, which teaches him to focus on a primary sound, such as a teacher's
voice. The other is an experimental therapy called interactive metronome. It
requires that Frankie clap his hands or tap his feet in time to a metronome.
The exercise trains his brain to ignore distractions. Just as important are
classes Frankie takes to strengthen muscles and increase coordination and
confidence and to give him positive experiences interacting with other kids.
With the help of his gymnastics coach, Rory Baggao, he has become adept at
forward rolls. He also enjoys an exercise and movement class taught by
former Dodgers pitcher Jim Gott, himself the father of children with autism.
But life is not all work for Frankie. This year
he has made great
strides in learning how to play. Lots of the fun is provided by Chocolate,
the Labrador retriever we got him last Christmas. Chocolate is now much
bigger but still playful and eager for his young master's attention.
Frankie takes an art class for children with
special needs at
Education Spectrum in Altadena. His teacher, Vicki Howard, has nurtured an
artistic streak in him. He loves to draw and paint and does so with a
precise style. Could it be that his artistic and visual skills are
developing more rapidly to compensate for the difficulty he has processing
sound? Only the future will tell.
But at least I now find myself thinking about
Frankie's future and
feeling hopeful about it.
I'm confident that he will be back in a classroom
someday. He may be
older than his classmates due to his developmental delays. And his peers may
find his behavior eccentric. But with proper support, he'll be able to hold
his own academically. College or trade school and a career are not out of
the question.
Of course, I am not so naive as to think there
are no more struggles
ahead. If the last six years have taught Magdalena and me anything, it's
that nothing will ever come easily or quickly for Frankie. But good can
come, if we are patient and persevere.
******************************
Cash fury over jab experts
From
the Sunday Mail, December 23rd 2001 - by Lucy Johnston and Geoff MarshParents of autistic
children reacted furiously last night as it emerged that some of the experts
who persuaded the Government that the MMR vaccine is safe are paid by the drug
companies that make it. A leading parents' group claimed there was "clearly a
potential conflict of interest" and that the experts should not have been
allowed to advise the government.The specialists gave evidence to the Medical
Research Council, which was asked by the Department of Health in March to
establish if there was a link between child autism and the measles, mumps and rubella
vaccine.The MRC found there was no risk, backing repeated Government claims
that the vaccine is safe. But the parents, who have launched legal action
against drug firms Aventis Pasteur, Merck and Co and Glaxo SmithKline, are
furious.Jackie Fletcher, who represents parents' group Jabs, said: "Either
they are independent experts or they are acting for the manufacturers. They
cannot do both."The experts properly disclosed their interests and there
is no suggestion that any of the evidence they gave was actually biased.One of
those involved, Professor Eric Fombonne, is a consultant for Aventis Pasteur in
its legal fight against autistic children's families. Also involved were
Professor Bert Rima, from Queen's University, Belfast, who is working for Merck
and Co, and Professor Ian Sanderson, from Queen Mary's University of London,
who is carrying out work for Aventis Pasteur.Professor Sir Michael Rutter, who
is being paid to provide reports to help Glaxo SmithKline, was one of the seven
"external expert advisers" who helped guide the course of the MMR
enquiry. He insisted he had not been influenced by his connection with the
company. He said: "When there are major issues of this kind to analyse it
involves people in the field and inevitably there will be conflicts of
interest. It is only unacceptable if these are kept secret."Earlier this
month it was revealed that Professor Eve Johnstone, chairwoman of the group
reviewing the MMR vaccine, owns shares worth £10,000 in Glaxo SmithKline. A
spokeswoman for the MRC said: "Any declarations were made openly at the
beginning of our review and it wasn't judged that any of the experts had a
conflict of interest."© Lucy Johnston and Geoff Marsh
http://www.jabs.org.uk/
******************************
First Session of the 107th Congress comes to a
close -- Small victories for families, but still a long way to go next session!
Visit your
Senators and Representatives while they are in their home districts through
most of January! The Second Session of the 107th Congress will convene on
Jan. 23. Thank them for all they do to support families, but remind them
there is still a long way to go to make sure families have respite care when
and how they need it. Alert them to introduction of the Lifespan Respite
Bill in 2002 and urge their support. For other action, see below.
In this alert:
-- Legislation enacted this session: Promoting Safe and Stable Families, ESEA
-- FY02 Labor, HHS, Education Appropriations for important programs, including
the status of the Compassion Capital Fund, Mental Health Parity, NFCP
-- Legislation to watch out for next session, including CAPTA, Family
Opportunity Act, Children Who Witness Domestic Violence, Child Care, and TANF
-- Family Violence Funding Opportunity
-- Third International Conference on Family Care -- October 2002
******************************
Here is the legislation that was enacted this
session that affects children and families:
Promoting Safe and Stable Families: On December 13, the Senate passed H.R.2873,
legislation to reauthorize the Promoting Safe and Stable Families Program,
exactly as approved by the House on November 13. Some states utilize
funds from this program to support respite and crisis services primarily, but
not exclusively, for children already known to child protective services.
A different Senate bill, S.1503, which would have continued guaranteed
funding for the Safe and Stable Families program for the next five years, was
not considered. H.R.2873, the Promoting Safe and Stable Families
Amendments of 2001, which has gone to the White House for President Bush to
sign, increases by $200 million the funding for the Safe and Stable Families
Program, but only as recommended appropriations, not the guaranteed funding the
program has had since its inception. The bill also authorizes
discretionary funds of $60 million for education vouchers for children aging
out of foster care; and $67 million for a mentoring program for children whose
parents are incarcerated. Base funding for the Safe and Stable Families
Program remains as guaranteed money at $305 million. (See below for FY 02
appropriations for this program.)
Elementary and Secondary Education Act (ESEA) Reauthorization The
education reform conference report, which considerably expands federal
involvement and funding in education oversight, was cleared by the Senate on
Dec. 18 on a vote of 87-10. The House approved the bill 381-41 on Dec.
13. Sens. Jeffords (I-VT), Wellstone (D-MN) and Dayton (D-MN) voted
against the conference report because it did not include the Harkin amendment
to fully fund IDEA. The good news was that two discipline amendments were
also voted down in an earlier meeting of conferees, representing a major
victory for children with disabilities. President Bush is expected to
hold a White House signing ceremony in early January.
______________________________________________________________________
FY 2002 Appropriations for Labor, Health and Human Services and Education:
Almost three months after the beginning of the new fiscal year, Congress
finally completed the last of the 13 annual appropriations bills and adjourned
just in time for the Christmas holiday. The House and Senate passed the
conference report on the appropriations bill (HR 3061) that funds the Departments
of Labor, Health and Human Services and Education. On most funding decisions,
the House and Senate split the difference between their respective bills. A
table comparing the final appropriations for programs important to respite and
crisis care and the families they service for FY 2002 to FY 2001 is below
(amounts are in millions)
FY
2001
FY
2002 Difference
University Center's of Excellence
21.8
24
+2.2
(formerly University Affiliated Programs for
Persons with Disabilities)
Developmental Disability Councils
67.8
69.8
+2.0
Maternal Child Health Block Grant
714.0
732.0
+18.0
Social Services Block Grant 1,725.0
1,700.0
-25.0
CAPTA State Grants
21.0
22.0 +1.0
CAPTA Discretionary 33.2
26.2
-7.0
Community-Based Family Resource and
Support Programs (CBFRS)
32.8
33.4
+.58
IDEA State Grants* 7,113.3
8,335.5
+1.2
IDEA Part D Discretionary**
326.7
337.3
+10.6
Promoting Safe and Stable Families***
305
375
+70
National Family Caregiver Support Program**** 125
141.5
+16.5
Child Care and Development Block Grant
2
billion
2.1
billion +100
Children's Mental Health
91.6
96.7
+5
* includes a 33.4 million increase for Part C Infants and Toddlers program
** includes an 8 million increase for Personnel Preparation program
***the new provisions authorized under HR 2873 Promoting Safe and Stable
Families to fund
educational vouchers for foster children aging out of the system, or mentoring
programs for children of prisoners was not funded for FY02.
****5.5 million of the 141.5 million appropriated for NFCP goes to Native
American family caregiver support program
Compassion Capital Fund. The conference agreement also includes
$30 million for President Bush's Compassion Capital Fund, part of his
Faith-Based Initiative. Funds will be used for grants to public/private
partnerships that help small faith-based and community-based organizations
replicate or expand model social services programs. The conferees also
intend that funds be used to support and promote rigorous evaluations on the
"best practices" among charitable organizations.
Mental Health Parity. Despite overwhelming support for mental
health parity, the House-Senate Conference Committee refused to add the measure
to the final FY 2002 Labor-HHS-Education Appropriations bill (HR 3061).
House conferees opposed efforts to add the Senate parity amendment,
sponsored by Senators Pete Domenci (R-NM) and Paul Wellstone (D-MN), to the
final version of HR 3061. After formally rejecting the full parity provided by
the Domenici-Wellstone amendment, members approved a motion offered by Rep. Randy
Cunningham (R-CA, who voted against the Domenici-Wellstone amendment) to extend
the recently expired 1996 Mental Health Parity Act for an additional year. This
1996 law requires health plans to meet a standard parity only for annual and
lifetime dollar limits - far short of the Domenici-Wellstone amendment's
standard of full parity. This one-year extension of 1996 law is expected to be
signed into law as part of HR 3061
******************************
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