Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for October 2003 #2. As always, email your thoughts and/or questions.
I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.
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IF this email is NEW to you and you don't recognize the name... WELCOME! These emails happen two to four times a month for the Southern California Autism support group called TACA.
We focus on parent information and support, parent mentoring, gluten/casein-free diets, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to Autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
TACA has an official web site at www.tacanow.com
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In this edition of TACA e-news:
- Next TACA Meeting Information
- Upcoming TACA Costa Mesa schedule & other TACA
meeting schedule info –
September - January 2004 - IMPORTANT: Location & time change information for TACA Costa Mesa meetings!
- General News:
- Event CANCELLED DUE TO FIRES: Dr Bernie Rimland of the Autism Research Institute to speak at TACA San Diego!
- Autism Increases DRAMATICALLY from 1992-2002 (the latest numbers)
- Special Planning for Special Needs Children – Special needs trusts
- CARD moves & greatly expands headquarters
- Vaccine News
- Flu Shot Anyone? A commentary
- www.military.com and special report on soldiers & vaccines
- Need more support? Introducing Coffee Talk!
- Upcoming Conferences
- Personal note
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1) Next TACA COSTA MESA support group meeting:
Date: Saturday, November 8th, 2003 (always the 2nd Saturday of each month)
Time: 1:30 - 4:30 (NEW TIME!)
TOPIC: Mainstreaming
High Functioning ASD Kids
By Jessica Postil – Autism Spectrum Consultants
PLACE: NEW LOCATION!: Being confirmed this week!
CONTACT PHONE FOR DAYS OF THE MEETING ONLY: 949.678.9010
Please do NOT use the cell contact for days outside of the meetings. Thank you!
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2) UPCOMING TACA Costa Mesa Meeting Schedule:
Reminder: Meeting locations TO BE DETERMINED FOR NOVEMBER ON!
December 13, 2003 School District Roundtable -
The meeting will start with a general announcement about the state of local school districts. Then each school district or general area will break out into separate groups to discuss general information, share IEP’s and strategies.
Note: This meeting is for PARENTS ONLY!
January 10, 2004: Big Fun Gymnastics – Occupational Therapy for ASD Kids
Gene Hurwin
Much more is being planned for 2004! Stay tuned!
Note: How do topics get selected for TACA MEETINGS? Each location frequently does a formal or informal survey of attendees by the Meeting Coordinator. Based on the meeting attendees’ requests, topics are then selected and speakers are scheduled. Is there a topic you are interested in learning more about? Please forward a note to Lisa. We want to make sure the meetings are informative with topics based on the group’s needs. If you have a suggestion, we would like to hear from you!
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TACA has FIVE So. California meeting locations:
1) Costa Mesa: 2nd Saturday of each month (info in item #1 for meeting subjects and details.)
2) Mission Hills (the Valley man!): NEW the 1st Sunday of every month, 7-9 p.m. Location: Jay Nolan Community Services – 15501 San Fernando Mission Blvd., Suite 200, Mission Hills CA 91345... - Info: Contact Us
3) San Diego: 4th Tuesday evening – 6:30- 8:00 p.m. – Info: Contact Us
4) Corona: 3rd Saturday – 1:30–4:30 pm - NEW LOCATION!!!
EMAIL FOR MORE INFO AT: Contact us
Topics for the TACA Corona location are:
· Saturday,
November 15th (1:30 pm - 4:30 pm)
Lisa Ackerman - Interventions that worked
for my child. This will be the presentation given at the Great
Plains Conference for those who missed it.
5) Torrance: 3rd Monday of each month at Whole Foods Market on PCH in Torrance – 6:30 - 9:00 p.m. Info: Contact Us
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3) General News:
Please note due to California fires, this event is
CANCELLED!
Due to San Diego fires – it will be rescheduled
A Very
Special Presentation by
Dr. Bernard Rimland
What Research Tells Us About the Cause
and Treatment of Autism
We will advise ASAP when this will be rescheduled
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Autism Increases DRAMATICALLY FROM 1992-2002
Autism Increases 870% In The United States, 1992-93 to 2002-03
[From Raymond Gallup, USA.]
The following is taken from the official State statistics produced by the Department of Education in the United States, for numbers of children aged 6-21 served by IDEA (Individuals With Disabilities Discrimination Act) who have autism. It compares the increase over the nine years between 1992-93 and 2002-03:
State 1992-1993 2002-2003 Percentage Increase
Alabama 68 1,096 1,512
Alaska 8 259 3,138
Arizona 199 1,689 749
Arkansas 30 912 2,940
California 1,605 16,093 901
Colorado 14 688 4,814
Connecticut 164 1,754 968
Delaware 15 345 2,400
District of
Columbia 0 179 -
Florida 582 5,117 779
Georgia 262 3,057 1,068
Hawaii 52 528 915
Idaho 39 480 1,131
Illinois 5 5,080 101,500
Indiana 273 3,975 1,761
Iowa 67 1,148 1,613
Kansas 74 878 1,086
Kentucky 38 1,171 2,982
Louisiana 409 1,493 265
Maine 37 675 1,724
Maryland 28 2,962 10,479
Massachusetts 493 3,193 857
Michigan 288 5,463 1,797
Minnesota 296 4,116 1,291
Mississippi 0 537 -
Missouri 336 2,254 568
Montana 20 232 1,060
Nebraska 4 481 11,925
Nevada 5 684 13,580
New Hampshire 0 491 -
New Jersey 446 4,180 837
New Mexico 16 311 1,843
New York 1,648 8,274 402
North Carolina 786 3,518 348
North Dakota 9 178 1,878
Ohio 22 4,017 18,159
Oklahoma 31 829 2,574
Oregon 37 3,339 8,924
Pennsylvania 346 4,836 1,298
Puerto Rico 266 531 100
Rhode Island 19 471 2,389
South Carolina 141 1,168 728
South Dakota 36 285 692
Tennessee 304 1,359 347
Texas 1,444 8,576 484
Utah 105 843 703
Vermont 6 247 4,033
Virginia 539 2,966 450
Washington 476 2,344 392
West Virginia 101 429 325
Wisconsin 18 2,739 15,117
Wyoming 15 132 780
Total 12,222 118,602 +870 overall
(Source: Individuals With Disabilities Education Act data, US Department of Education http://www.ideadata.org/ )
A special plan - Families of special-needs children need to take steps to safeguard their financial future.
By THERESA WALKER - The Orange County Register - Sunday, October 12, 2003
FAMILY CHALLENGES: Paul and Elaine Weber had many unwelcome surprises in planning for the future of their children, Ben, 13, who is diabetic, and Kim, 11, who is autistic. Matters got more complicated recently when Paul was diagnosed with cancer.
Elaine and Paul Weber started thinking seriously about the long-term future care of their daughter Kim when she was 6.
They finally accepted the tough emotional truth that nothing they tried was going to "fix" Kim's autism.
She wasn't going to be able to live independently as an adult. It was up to them to create the financial foundation to support Kim long past the days when they would be around.
The Webers had taken some steps - putting money in a savings account for Kim, buying savings bonds.
But at a workshop sponsored by the Autism Society of Orange County, the Costa Mesa couple learned that what they thought wouldn't be nearly enough financial security for their daughter was actually too much.
They found out what many parents of special-needs children don't know: Leaving assets of more than $2,000 triggers a loss of government benefits. That's all it takes to cut off Supplemental Security Income, or SSI, which pays for the food, clothing and shelter of a disabled adult, or an underage child in a low-income family.
Even more worrisome, disqualification from SSI means losing the crucial medical coverage provided through Medicaid, or Medi-Cal in California, and perhaps having to pay money back to the state.
"I was blown away by that one," Elaine Weber says of the wake-up call she got at that workshop five years ago. "I was like, how horrible, we can't leave her any money."
But she also learned of something called a special-needs trust, established by law in 1993 for the accumulation of funds that are used strictly for lifestyle needs - education, transportation, leisure – and don't jeopardize government benefits.
"If I hadn't gone to that seminar," she says, "I wouldn't know any of this." Financial-planning experts estimate that less than 15 percent of parents with special-needs children have done any sufficient planning for the future - financial, legal or medical.
Tips and resources for planning
Tips and resources for special-needs planning
Meet with a financial planner before you go to a lawyer.
Go with a goal in mind and know your current financial situation. Consider quality of life.
Trying to calculate long-term needs can be tricky.
Bart Stevens of Bart Stevens Special Planning in Scottsdale, Ariz., has a book and a kit to help with prep work. Both "The ABC's of Special Needs Planning Made Easy" ($34.95) and his "Special Needs Planning Kit" ($240) are available at his Web site or by calling (888) 447-2525.
MetDESK special-needs planning, a service of Metropolitan Life Insurance Co., offers free seminars, attorney referrals and other information. Go to the Web site or call (877) 638-3375.
Other useful Web sites include:
• Special Needs Advocate for Parents
• National Dissemination Center for Children with Disabilities • The Financial Planning Association • National Association of Personal Financial Advisors.
"It's partly from lack of knowledge, and partly from hearing so many different things you're not sure what to do," says Nadine Vogel, mother of two special-needs children and founder of the 10-year-old nonprofit organization Special Needs Advocate for Parents, or SNAP. "Part of it, too, is that it's emotionally daunting. A family has to really come to terms with the child's diagnosis and their lifetime issues."
Parents typically don't know, for instance, that once their child reaches adulthood at 18, the law does not allow anyone else to make medical decisions for them without a legal document in place naming a medical guardian, Vogel says. Otherwise, if the disabled adult is developmentally incapable, the hospital or the state will make those decisions. There's a growing effort to make parents aware of special-needs planning, including workshops sponsored by support and advocacy groups, school districts, and financial-service companies.
Vogel's personal experience and the large number of financial queries made to the SNAP hot line prompted her to persuade her employer, Metropolitan Life Insurance Co., to launch MetDESK (Division of Estate Planning for Special Kids), which she oversees, in 1998.
Joe Sahabu, a MetDESK specialist based in Fullerton, says he has given many free seminars in the Los Angeles area over the past three years and is working to make his services better known in Orange County. He is willing to sit down with anyone, no matter the size of the group. Call Sahabu at (714) 255-8158 or (800) 492-3553, Ext. 1286, or e-mail jsahabu@metlife.com .
"Even one person, I'll go and talk to them because I think it is so important," Sahabu says. "It's never too early to start, and it's only too late if the parents pass away. As long as one parent is around, it's never too late to make a plan." The Webers, who both work, were in the process of taking out joint survivor life insurance, also known as a second-to-die or last-to-die policy, that would pay into the special-needs trust fund for Kim, now 11, only after both parents are dead.
But before the insurance company got back to them, Paul was diagnosed this summer with cancer and is undergoing chemotherapy. Now Elaine Weber is looking at taking out a $500,000 policy on herself that she expects will cost about $400 a month. The cost of a $500,000 joint survivor policy for a couple runs about half that.
"I never thought at 46, I'd be sitting here with my husband having cancer," she says. "There's just like this list of things that should be done. It's a lot of work, but when it's done, it's done. Once everything is in place, it really will be peace of mind."
The Webers' dilemma underscores what Bart Stevens says he stresses to those who attend the seminars that his Arizona-based company, Bart Stevens Special Needs Planning, puts on around the country: Families with special-needs children - be they underage or adults - can least afford to procrastinate when it comes to long-term planning.
"I tell them what if you get in an accident when you leave this seminar? What's going to happen to your child?" says Stevens, who has focused on special-needs planning the past 10 years. "That usually opens their eyes. They've got to do it. They can't put it off."
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CONTACT OC REGISTER @: (714) 796-7793 or twalker@ocregister.com
CARD (Center
for Autism & Related Disorders)
Announces the move of their corporate headquarters &
The First Multidisciplinary
AUTISM TREATMENT CENTER
19019 Ventura Blvd. Tarzana, CA 91356
If you provide treatment or services for patients with Autism and related disorders, we invite you to contact us today to explore joining the new Autism Treatment Center in Tarzana, CA.
Desired Professional Service Providers Include:
Occupational/Physical
Therapists Medical Practitioners Nutritionists Speech
Therapists Family Counselors Vision Therapists Dentists Psychologists
Educational Resources
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4) VACCINE NEWS
COMMENTARY
Inside the Beltway: Flu Shot, Anyone?
(From the Shafer Newsletter & By John McCaslin in the Washington Times.] http://washingtontimes.com/national/20031014-104150-4968r.htm
Gotten your flu shot yet? Whether you have or not, one leading congressman's warning might frighten you more than the needle.
If your doctor hasn't told you, Rep. Dan Burton, Indiana Republican, feels it is his duty to inform Americans about the "contents" of their influenza vaccines.
"As we approach the flu season, many of you will visit the doctor's office and receive an annual influenza vaccine. This might prevent the flu, but what else will it do?" Mr. Burton said. "You should be aware that the vaccine you are about to receive contains thimerosal — a mercury-laden preservative."
Mr. Burton says scientific evidence "continues to accumulate" regarding a biologically plausible connection between the preservative and certain neurological disorders. Some scientists have attributed the growth in Alzheimer's disease and autism to mercury found in certain vaccines.
During his chairmanship of the Government Reform Committee, Mr. Burton held numerous hearings on possible adverse effects of thimerosal.
As for a second opinion, we call upon Senate Majority Leader Bill Frist of Tennessee — a doctor in real life — who actually reminded friends in his Christmas cards last year: "Don't forget your shots: flu shot annually."
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Another Article: Mysterious Blood Clots Kill troops
Thanks to Gill Murillo - another interesting, “related” article from www.military.com
http://www.military.com/NewsContent?file=FL_mystery_100703&ESRC=army.nl
(Please click the link in order to save room in this newsletter.)
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5) Need more support? Introducing COFFEE TALK – FIRST INSTALLMENT TOMORROW!
Coffee talk is going to be your hour (or so) once the kids are away to school to chat with other families affected by Autism. This is an unstructured, casual meeting environment to chat and talk about what you want to talk about.
Date: Tuesday,
October 28
Time: 9:00 a.m. –
10:30 a.m.
Location: Diedrich Coffee – Costa Mesa
1170 Baker Street (off the 405 freeway and Fairview Street)
NO need to RSVP, just join us for a little coffee, a little talk, no big whoop!
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6) CONFERENCES IN SOUTHERN CALIFORNIA:
A Free Workshop For Parents, Educators, and Community Members “The IEP Process”
Location: Lindberg – Schweitzer Elementary School 4133 Mt. Albertine Ave. (92111) SAN DIEGO
Corner of Mt. Albertine & Balboa
Date & Time: Saturday, November 8, 2003 / 9 A.M. to 1 P.M.
Registration at 8:30 A.M.
Instruction, information, materials, and resources to help you:
· Learn about the Individuals with Disabilities Education Act (I.D.E.A.)
· Individual Education Program (IEP); Participate more effectively in the process
· Understand more about how kids learn
· Know more information about ‘related services,’ ‘behavior intervention,’ “assistive technology’
For workshop
information, call: 1-800-281-8252
Please register by November 5th
NOTES: WALK-IN REGISTRATION WELCOMED
HOWEVER PRINTED MATERIALS MAY NOT BE AVAILABLE FOR WALK-IN-REGISTRATION
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Jay Nolan – Journey to Solutions 2003
Friday November 14 – 16, 2003 – Pasadena Conference Center
Location: 300 East Green Street, Pasadena 91101
Hear about the most current information and research on autism spectrum disorder. Topics include: Floortime, Behavior, High School Academics, Super Sensory Workshop, Strategies for Successful Inclusion, Visual Strategies to Enhance Language and Promote Early Literacy, Communication Techniques & Therapies, Role of Medication for ASD and much more.
Speakers include: Sean Barron, Margaret Bauman MD, Teresa Bolick Ph.D., Brenda Bursch Ph.D., Cure Autism Now, Anne Donnellan Ph.D., Barbara Doyle M.S., Gail Gillingham M.S., Esther Hess Ph.D., Paula Kluth Ph.D., Lisa Lewis Ph.D., Rajarshi ‘Tito’ & Soma Mukhopadhay, Jerry Newport, Jamie Ruppmann, Jeffrey Sell Esq., Rosemary White O.T.R., Pamela Wolfeberg Ph.D..
Invited Organizations: California Institute of Technology, National Alliance for Autism Research, MIND Institute, National Institute of Mental Health, National Center on Birth Defects & Developmental Disabilities. Hosted by the Jay Nolan Community Services, Inc.
For more information (818) 242-9108 or email conference@jaynolan.org
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MAJOR Autism Conference announced for Southern California by CASD.
Location: Santa Monica – February 20-22, 2004
Watch web site for speaker list: http://www.casdweb.org/index.htm
If you have questions or would like more information, please email the director at kazuko@grandecom.net.
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7) Personal Note:
Due to the firestorms across Southern California, a few TACA families have been evacuated for their safety. I hope this e-newsletter reaches those families safely in their homes – soon. Please everybody think good thoughts for all families and firefighters as we hope these firestorms are under control soon.
At the same time, for families in Southern California, please note the smoke residue and ash will affect all children. It is recommended to keep outdoor play at a minimum due to exposure. (The residue on your car, porch, etc. will surely get into your lungs!)
Hugs, thanks and be safe -
Lisa A Jeff's mom
Web Page for the TACA GROUP: www.tacanow.com - check it out / let me know your thoughts at contact us !
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
TACA does not engage in lobbying or other political activities.
P.S. TACA e-news is now at 796 families