AutismNews Network

This page contains items of interest that are not workshops, conferences or support group meetings.  We will place here information about fundraisers, contests, science, or political action, and other articles relating to taxes, insurance and education.
 

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1st Annual Hope Ride for Autism

Families and individuals are invited to greet the riders and enjoy the familiy oriented
festivities at Lions Park, in Waterman Illinois. Food, Music and Fun for all!


Questions??? Call 1.630.691.1270 or visit www.hoperideforautism.com
[http://rs6.net/tn.jsp?et=1102666004571&s=951&e=001XAdw2XhGGcBagiD3oXKOXYeseiZ2EV-WXSnY_-KL7z5QFNHmrsRrAj7ytvudO2fXxBJmPdvX2unazErKQw5lqZsOYfA77WetUdzZLUKlt6HEADWZa97d422lNvyAhEtk]

A look at the Magneto EncephaloGraphy and Dr. Jeffrey Lewine

Jeffrey D. Lewine*, Richard Andrews, Michael Chez§, Arun-Angelo Patil, Orrin Devinsky¶, Michael Smith#, Andres Kanner#, John T. Davis*, Michael Funke*, Greg Jones*, Brian Chong*, Sherri Provencal*, Michael Weisend**, Roland R. Lee**, William W. Orrison, and Jr, MD*

The Dynamic Child II: Addressing our Collective Needs

• autism spectrum disorders
• sensory integration dysfunction
• social, emotional, behavioral, and/or learning challenges

• Carol Stock-Kranowitz, M.A. author of The Out-of-Sync Child Sensory Strategies to Improve Children’s Learning and Behavior”
• Timothy J. Wahlberg, Ph.D., Licensed Clinical Psychologist “Managing Daily Stresses for Parents and Caregivers”
• Allen Weimer, M.S., LMFT, LCPC “Assisting Siblings with their Unique Challenges”
• Sandy Kakacek, M.S., LCPC, Behavior/Education Consultant“Supporting Teachers and Therapists as they Serve the Learning Child”

1.  Understand the basics of Sensory Processing Disorder (SPD) and its three major categories: sensory modulation disorder, sensory discriminationdisorder, and sensory-based motor disorders, including postural disorder and dyspraxia.
2. Recognize characteristics of tactile, vestibular, proprioceptive, visual, and auditory processing dysfunction.
3. Demonstrate how SPD interferes with a child's ability to function in typical childhood occupations of learning, socializing, communicating, working, and playing.
4. Prepare new activities and modify existing activities and environments to engage various sensory systems and to improve children's sensory modulation, sensory discrimination, and sensory-based motor abilities.
5. Examine the ways that everyday stresses of caring for and working with children on the autism spectrum affect all those who are involved in the children’s lives.
6. Give examples of ways to manage and reduce stress while caring for, living with, and working with children on the autism spectrum.

Coverage for Autism Therapy Prompts State Mandates and Lawsuits Against Blues Plans

Imagifriends of Imagiville

Help for families visiting hospitals from out of town

What autism means to a father

Taking Sides on Autism

By Julie Deardorff

May 11, 2008

Illinois Senate Bill 1900 would mandate coverage for autism, 2008

Researching articles on ABA and other topics

Illinois Court allows Thimerosal lawsuit to go forward

Autism Therapeutic School-Waukegan Open House

1401 West Dugdale Road  Building 33
Waukegan, Illinois  60085

Monday, February 25, 2008
Open House 9:30 a.m. until 11:30 a.m.
Plaque Presentation 10:00 a.m.
Refreshments will be served.
Open House/Plaque Presentation

Please RSVP by Friday February 22, 2008
To Susan Schladt by Phone, Fax , or email.
Susan Schladt, Social Worker
847-625-2018 Phone
847-625-2985 Fax                                                      
[email protected]

Easter Seals to Open First Rockford Autism Therapeutic School

The Rockford project is part of Easter Seals Metropolitan Chicago’s (ESMC) expansion of its autism therapeutic schools program. Additional ESMC autism therapeutic schools are in Chicago, Waukegan and Tinley Park. Easter Seals’ new Autism Therapeutic School Rockford works in collaboration with the University of Illinois College of Medicine in Rockford to provide students with additional support.

The new school will be housed in the Easter Seals Children’s Development Center, making the full-service family facility the area’s premier provider of child care, developmental, therapeutic and parenting support services. Additional services at the center include: teen family support, developmental therapy, pediatric therapy and family support.

Another key part of Easter Seals’ expansion will be centered in ESMC’s Therapeutic School and Center for Autism Research, in Chicago’s Illinois Medical District.

The first phase of the project will be finished in the fall of 2008. Upon completion, the custom-designed campus will provide a full continuum of services for children with autism, emotional behavior disorders and severe learning disabilities—therapeutic school, early intervention, traning, school-to-work transition, independent living facilities—and research capabilities.

Easter Seals Metropolitan Chicago and Easter Seals Rockford participated in a formal RFA process and were each awarded a $200,000 grant from the Illinois Autism Program. This will allow Easter Seals Metropolitan Chicago and Rockford to begin implementation of Regional Service Centers. The primary mission of Regional Service Centers is to provide direct service and support by implementing, evaluating and refining evidence-based programs for diagnosis, treatment, education, training, consultation, resource and support. These centers will include:

• Family/Community Resource rooms
• Developmental screening
• New diagnosis family orientation program
• Daycare/respite training
• Provide training in diagnostics evaluations
• Diagnostics
• Family-focused consultation (functional assessment for treatment planning)
• Social skills groups
• Community planning

Family and Community Resource rooms will contain free visual supports and ideas as well as maintain a large catalog of games and learning aids that can be loaned to parents and providers across the regions. Easter Seals Metropolitan Chicago and Easter Seals Rockford are proud to have obtained this affiliation as formal network partners and look forward to continuation of the project for years to come.

Rockford-area parents of children with autism and school officials are encouraged to call Jennifer Sims at (815) 965-6745 for more information about the new school and to determine whether their children are candidates for these services.

Is genetic research a gigantic black hole sucking up research dollars on a futile search?

The last chance to comment on the Illinois State Board of Education proposed changes to the regulations is:

Law Boosts Insurance Coverage For Autism in Illinois

Is Catbert trying to ruin your job?

New law  allows school districts to claim state reimbursement when they retain board-certified behavior analysts

What should an IEP contain:

Man's brain rewired itself after crash severed nerve connections

Nerve cells that have not died can form new connections; for example, nerves in the arms and legs can grow about an inch (2.5 centimeters) a month after they are severed or damaged. However, this happens far less often in the brain.

The new research suggests that instead of the sudden recovery Wallis seemed to make when he began speaking and moving three years ago, he actually may have been slowly recovering all along, as nerves in his brain formed new connections at a glacial pace until enough were present to make a network.

Easter Seals announces pioneering autism $24 million school and research center

State Legislature considering diluting due process rights.

Department of Education supports the Professional Development in Autism Center

The Professional Development in Autism Center (PDA) provides training and support for school districts, families and communities to ensure that students with ASD have access to high quality, evidence-based educational services in his or her local school district.
Principles:

• Students with ASD are entitled to be provided with meaningful access to the general education curriculum. 
• Students with ASD are entitled to educational programs based on the best available evidence.
• Interventions based on behavioral principles are the cornerstone of an educational program and should be individualized to produce relevant outcomes.
• Intervention and educational programs should be evaluated on the basis of measurable outcomes that are meaningful from the perspective of the student and his/her family and the educational team.

NEA issues Guidelines For Teaching Children with Autism

The Ten Things The Child with Autism Wishes You Knew by Schafer

The importance of enrolling in P.U.N.S

Below is an idea for you to run past your local PAS agencies: sponsor a night at a local school to allow parents to get signed up, after work hours.  Call your ISC/PAS agency and run the idea past them.  If they are not open to the idea, let me know and I’ll get them opened to it.  We’re thinking of setting them up in April (Autism Awareness Month) and we need your help to get your local groups involved.

We need everyone on this database ASAP, and this seems like a great way to get people to do it.  Please do whatever you can to set this up and encourage people to get on that database.  For more information, read the attached explanation and take a look at the form that the PAS agencies fill out.
Thanks,

Autism Society of Illinois
2200 S. Main Street, Suite 317
Lombard, IL 60148-5366
630-691-1270 Phone
630-888-1270 Toll-Free
630-932-5620 Fax
www.autismillinois.org

The Division of Developmental Disabilities has set up a system to determine needs for services/supports, a "cross-disability database called the Prioritization of Urgency of Need for Service (PUNS). You NEED to get on this waiting list for services.

Call your local PAS (Pre-Admission Screening) agency and get your child (young or old) into that database, even if they tell you that you are not eligible for their services--that is the whole point!! They have to count you and consider you for services--including future services.

A Message from Family Support Network to contact your legislators:

After THREE years of no new funding for supports for families that include children with disabilities, this is VERY EXCITING!! Momentum is building as a result of the important work of the Autism Task Force. You can read that report at http://www.dhs.state.il.us/AutismTaskForceReport.pdf

As important as that report is, as you read it you will find yourself thinking, “Wait a minute, all kids with disabilities need supports and services like that!” We agree! The Family Support Network, The Arc of Illinois and all the members of the “Do the Right Thing Coalition” have been working with members of the Task Force and the Autism Society to create a new program of supports and services that ALL children with significant developmental disabilities including Autism will be able to access.

The Illinois General Assembly is in session now!! We need your help NOW!

Please contact your legislators. By phone, by letter, by e-mail, tell your story!!

Ask them to support legislation to support a NEW waiver that provides services to children with developmental disabilities including Autism. There are two bills being run at the same time. Ask them to sign on as a co-sponsor. This is a very strong indicator of their support.
 

• Tell them about your child
• Tell them about the needs of your child and your frustration providing for those needs.
• Tell them how disability has impacted your life and how this waiver could help.

Our great friend, Representative Lee Daniels, is sponsoring a similar bill in the House! It’s not been assigned a bill number yet.

 You can identify your Representative Senator at http://www.elections.state.il.us/DistrictLocator/AddressSearch.aspx. You can also access their contact information there.

You can track the bill’s progress and growing list of co-sponsors at http://www.ilga.gov/legislation/BillStatus.asp?DocNum=2415&GAID=8&DocTypeID=SB&LegId=23218&SessionID=50&GA=94

Some things the waiver could provide are:

Applied behavioral analysis therapy, or an analogous habilitative methodology, parent/care giver education, social skills training, in-home supports.
respite, occupational, physical, and communication therapy (in excess of or not duplicative of the basic State Medicaid Plan services), environmental modifications to the home, including but not limited to (i) technological aids to assist with the individual’s safety and security and (ii) therapy or habilitation supplies and equipment needed for implementing the service plan, transition services to employment, transition services to independent living, individual service coordination, day care, crisis services, 24 hour emergency services, specialists, other assistive technology.

The memorial fund established at Thoughtful House has two objectives. First, it will support research into the causes of and treatment for autism
and related disorders. Liz had been convinced from the beginning of her own investigations that science would eventually reveal the truth as to what caused her son's autism and treatments that would help the hundreds of thousandsof other children, many of whom are locked in a sort of cognitive and communicative prison, as well as suffering from a range of gastrointestinal and metabolic symptoms. The fund will also help families in need pay for desperately needed clinical care.

The Thoughtful House
Liz Birt Memorial Fund
3001 Bee Caves Road
Austin, TX 78746

----------------------------------------------

*NAA* has set up a spot to memorialize Liz at:

http://www.nationalautismassociation.org/liz/liz.htm

Discrete Trial Software

Features:

•     A variety of different contrasting kinds of trial in each module.
•     Great animations. A powerful "reinforcer" for autistic kids (and others!)
•     Play online! -always up to date and nothing to "install".
•     Download whenever you want. We regularly add new animations and modules.
•     Select which images are available for each type of trial.
•     Choose how many images appear in the array for each type of trial.
•     Automatically keeps score of hits/prompts/misses for each individual trial.
•     Keeps count of the overall results and number of trials. Handy for program records.
•     You can use your own photos and pictures in place of the supplied images.
•     You can use your own voice files in place of the supplied ones.

-------------------------------------------------------------------------------------------------------

I am Karl Smith, father of an autistic son. I have created software to help children like my son. The program incorporates powerful behavioral principles to get even children that require one-on-one instruction to usually become independent learners on the software. It is quite customizable to accommodate various types of educational approaches as well as individual differences. The program complements various educational programming and interventions. The program is used widely with individuals with autism, other learning disabilities, and even typically developing children. Frequently in home situations, the young siblings of our target child will also like to use the software giving great role models and a sense of belonging for our target child.

This is a large program with over 125 content programs and hundreds of selectable reinforcers to motivate our kids. There is a wide range of potential reinforcers to engage even the most difficult to motivate individuals. You can even add your own child specific reinforcers. The content is in the developmental range of 2 to 8 years old and can work with even very low functioning individuals to typically developing but young children. Older children or adults that are severely delayed frequently respond to the software since we do not baby the student. How juvenile the software looks is dependent on the reinforcers picked for the student so that the software can accommodate very young children to severely delayed adults.

So that most families can afford the product, I only charge $99 for the home license and there is a $10 trial. This is incredibly cheep for such a huge product but it needs to be inexpensive to allow most of our kids to get access to it. Since most even very low functioning children can use the software independently, the program can deliver many thousands or even tens of thousands of dollars of equivalent education. I price the software to not compete with money needed for other services and treatments. My mission is to create effective but also affordable tools to help individuals with autism and other learning disabilities.

The software collects data for reports to easily determine the effectiveness with a specific child. For a $10 home trial, it is virtually free to try the software. The $10 covers our shipping and handling costs and applies to the full price if purchased within 60 days.

Early study shows Namenda may be effective aid in treating for autism

Dr. Michael Chez of Illinois presented a study of the use of the new drug memantine in 30 children with autism. This drug, marketed under the brand name Namenda, has been approved in the US for the past 6 months to treat the memory dysfunction associated with Alzheimer's disease. The parent ratings were quite positive, with 26 out of 30 parent questionnaires suggesting improvement in attention, motor planning, language, and self-stimulatory behavior. There were no side effects reported. Dr. Chez is also scheduled to report the use of memantine in children with seizures in a separate presentation to the American Epilepsy Society in December. Those children, some of whom presumably had autism as the cause of their seizures, showed improvements in the numbers of their seizures and also in behavior.

Although these 2 studies were not conducted in a blinded fashion , the results are encouraging, and suggest that this medication may be very useful in children with autism, with or without a seizure disorder. In addition, no lab tests are needed to ensure safe use. Some of the antiseizure meds, such as Depakote, require periodic blood test monitoring to ensure safety.
(Info provided by Autism Society of Maine.)

Report of the Illinois Autism Task Force: Findings and Recommendations

or here
Senator Dan Cronin stated at the Senate hearings, see below, now that there is a report, the Senate has something with which to base proposed legislation.  Thank you to everyone who did the work.  Maybe the State of Illinois can reverse its next-to-last place finish and provide a decent home to families, with an autistic member.

Autism One Conference

The House Developmental Disabilities and Mental Illness Committee

SUBJECT MATTER: Autism & Education

For a copy of the official notice, click on the following link:
http://www.ilga.gov/house/committees/hearings/94/H_8_214_2763.pdf

New source for equipment, news and links.

I have a 2 yr old son with Autism and have often become frustrated searching for that perfect toy or favorite therapy item.  I started my store with some of the items I found beneficial in working with my child.  During research I found some great movies dealing with the subject of Autism.  The links page includes some of my favorite websites with great resources.  The conferences page includes some conferences of great interest to me and which I plan on attending, myself.

My plan was to create a place where families, educators and therapists could go to find some great sensory toys, books, videos, autism awareness items, and common therapy products used with children affected by an Autism Spectrum Disorder. "

State Hearings on the Autism

We have identified several priorities for the upcoming legislative session(see below for details): direct funding support for families, improvedinsurance coverage, and improved school programs and teacher training.  Inmany other states, these are typically the three main sources of outsidesupport for individuals and families affected by autism.  All three areinadequate in Illinois and our families suffer the consequences.  We need tochange that today. 

WE NEED YOUR STORIES!  We're asking for laws to be changed and we need you to share your experiences:

1. Funding: 

• How did the diagnosis affect your lives? 
• How did you find help for yourchild and how much does it cost you to provide your child (young or old)with what he/she needs? 
• What have you and your family had to give up inorder to provide for your child with autism? 
• How much stress does thiscause, and how do you cope with life with a person with autism? 
• Do you ordoes your spouse sacrifice their job to care for you child? 
• How has itaffected your other children, your career, your marriage, etc.?

• Does your health insurance cover enough (or any) of your child's treatment? 
• Have you been denied insurance coverage for treatments yourchild needs? 
• Have you been through appeals with your insurance company?
• Have you been limited in the amount of coverage, such as speech therapy?
• How much has it cost you and your family? 
• Does your area have enoughmedical and treatment professionals qualified in autism?

• Do you have to fight your schools for services? 
• Do your school's teachers haveenough training and expertise? 
• Is their program flexible, or does your childhave to accept whatever's available? 
• Do good teachers have enoughsupport from your school district? 
• Do you--or does your district choose tospend its money on lawyers instead of training and services? 

Other topics are relevant, and should be covered, as well, so pleasecontribute your experience in a way that allows our legislators to know whatwe face and what state legislators can do about it.  It's always great to hear success stories, too.  Please share your personal story and encourageothers to contribute.  We want to present a diversity of family experiences,from all geographic areas, socioeconomic and ethnic backgrounds, familieswith children and families with adults, self-advocates, families withmultiple children, etc.

In addition, written statements should be sought from every family affectedby autism in the State of Illinois.  The format can be a simple "To Whom ItMay Concern" letter, and it can be long or short.  Your letter shouldcontain your full name and home address, but you can let me know if you want confidentiality.  You should send a copy to your state rep and statesenator, too.  Even if people cannot attend, we would love to presenthundreds of stories from our families to show why we deserve support and asignificant budget commitment THIS YEAR.  (Ever see Miracle on 34th Street,when they bring bags of letters into the courtroom on behalf of Santa?)

Please let me know if you can take part in these historic events.  Pleasecontact me if you have any questions: [email protected]

Atkins Diet for Autism and Landau-Klefner Syndrome?

Dr. Kossoff of Johns Hopkins has an article he has done presenting the results of his study using the Atkins Diet for seizure control will be published in the February Issue of Epilepsia. He will also be doing a presentation to the American Epilepsy Society at the their meeting in DC in December.

More on seizures:

Autism: Electroencephalogram Abnormalities and Clinical Improvement with Valproic Acid
By Audrius V. Plioplys, M.D.
Archives of Pediatrics and Adolescent Medicine  Feb.1994, Volume 148
Documents  three  sample case studies of children who demonstrated marked, measurable improvement after a trial period of valproic acid.

Acquired Epileptiform Aphasia
By  Roberto F. Tuchman, M. D.
Department of Neurology,  Miami Childrenís Hospital,  Solomon Klein Pavilion, 3200 SW 60 Ct., Suite 302, Miami, FL  33155.
Elaborates on the 3 different acquired epileptiform aphasias ( Landau-Kleffner Syndrome,  autistic epileptiform regression, and disintegrative epileptiform regression)  that may be affecting up to one third of all children diagnosed with  a pervasive developmental disorder.  (Source for statistic:  Tuchmanís own presentation on November 15, 1997 in  Rockville, Maryland.  Other neurologists have  mentioned a range from 25% to 40%.)

Treatment of Electroencephalographic Epileptiform Activity on Overnight EEG Studies in Children with Pervasive Developmental Disorder or Autism: Defining Similarities to the Landau-Kleffner Syndrome
By Michael G. Chez, M.D., Cathleen Buchanan, M.A., Michelle Field-Chez, M.D., Maurice F. Loeffel III, B.S., and Michael S. Hammer, M.D.
The Journal of Developmental and Learning Disorders, Vol. 2 No.2, 1998, pp. 217-229.

This article reviews the 278 children  with PDD or autism who were referred to Dr. Chez for an overnight Digitrace EEG to check for acquired epileptic aphasia or LKS; includes treatment results of those children whose abnormal overnight EEGís warranted medical treatment. Concludes that ìour experience and recent reports show that early diagnostic testing with prolonged sleep or overnight EEG data collection is critical to the identification of partially or fully treatable conditions in children with PDD or autism.

Lewine J, Chez M, Andrews R, et al. Neuromagnetic evaluation of children with acquired developmental aphasia. Epilepsia 1997;38:128

more articles: http://trainland.tripod.com/epilepsy.htm

OSEP has developed a series of topic briefs

   * Alignment with the No Child Left Behind Act
   * Changes in Initial Evaluation and Reevaluation
   * Children Enrolled by Their Parents in Private Schools
   * Discipline
   * Disproportionality and Overidentification
   * Early Intervening Services
   * Highly Qualified Teachers
   * Individualized Education Program (IEP), Team Meetings and Changes to the IEP
   * Individualized Education Program (IEP)
   * Local Funding
   * National Instructional Materials Accessibility Standard (NIMAS)
   * Part C Amendments in IDEA 2004
   * Part C Option: Age 3 to Kindergarten Age
   * Procedural Safeguards: Surrogates, Notice and Consent
   * Procedural Safeguards: Mediation and Resolution Sessions
   * Procedural Safeguards: Due Process Hearings
   * Secondary Transition
   * State Funding
   * Statewide and Districtwide Assessments

Autism Society of America Postage Stamp Now Available!

The Autism Society of America (ASA) announces the creation of ASA postage stamps, now available for purchase on the ASA Web site in the ASA Store section.

The $0.37 U.S. Postal stamps, one featuring ASA's 40th anniversary ribbon logo design and one promoting ASA's new branding efforts with the new logo design, are sold in sheets of 20 stamps per sheet at a cost of $20.Proceeds to Benefit ASA Endeavors

Show your commitment to ASA and autism awareness by ordering the new stamps today! Every purchase you make helps support ASA and its mission. They make a unique and meaningful gift to family and friends, and reflect your dedication on each piece of mail you send by helping to “get the word out!”

If you are not able to see it, copies areavailable for purchase from the Autism Society of Illinois: send an e-mailto [email protected].
You can also see it on this website: http://www.medill.northwestern.edu/medill/inside/student_work/broadcast_program.html

Third Annual Rally for Autism

 Saturday, September 24, 2005
 Independence Grove Forest Preserve
 Libertyville, IL (Route 137 just east of Route 21)
 Race Start 9:00 a.m.

Illinois Enacts  the Mercury-Free Vaccine Act.

Illinois enacts the The Autism Spectrum Disorders Reporting Act

Thank you to all who helped lobby for this Act. August 19, 2005.

(b) It is the purpose of this Act to establish a unified statewide project to collect, compile, and correlate information on public health and autism spectrum disorders, to be known as the Autism Spectrum Disorders Registry. The information is to be used to assist in the determination of public policy and to provide a source of information for researchers and the public, except when public disclosure of the information would violate the provisions of this Act and other applicable laws concerning confidentiality.

(c) In particular, the purpose of the collection of autism spectrum disorder incidence information is to:
(1) monitor incidence trends of autism spectrum disorders to detect potential public health problems, predict risks, and assist in investigating clusters;
(2) more accurately target intervention resources for communities and patients and their families;
(3) inform health professionals and citizens about risks, early detection, and treatment of autism spectrum disorders;
(4) promote high quality research to provide better information for the study of autism spectrum disorders, treatment,  nterventions, and services, and the impact of autism spectrum disorders on families, schools, public health, and the economy; and
(5) promote Illinois as a national leader in research into the causes, effects, and treatment of autism spectrum disorders.

ComputerBank has free computers

•  Does your child receive services from Special Education or Has tested 2 years behind in reading or math?
•  Does your household have limited income and no computer at home?

• Basic computer usage and care
• How computers can help with learning challenges
• Possible system additions
• Resources for free computer training

Families are requested to contribute on a sliding scale toward the $70.00 refurbishing cost.   Two trips to Springfield may be required.  Computer Banc is a Springfield, Il, volunteer, not-for profit, program.
Check the web site for more information:  http://www.computerbanc.org

 Family Orientation: May 11, 2004   &  July 21, 2004  6:00 - 7:30 p.m.

Cool stuff for autistic and NT kids

The site is at http://www.ozmofun.com

Neither AutismNews or MFH2 gets any kick-backs for endorsing this site (gosh darn it!).

The Arc says to watch for  $2500 Consumer Stipends And The Importance of PUNS

The catch is that in order to qualify for one of these stipends, you need tobe signed up on the Illinois Prioritization of Urgency of Need for Services (Illinois PUNS)!

The fact is that all future services/supports or changes in services/supports will be through the PUNS database. The PUNS database is for infants, children, adolescents and adults.

• You need to sign up for PUNS to get the one-time stipend.
•  You need to sign up for PUNS to get after school respite for your school-aged child.
• You need to sign up for PUNS if you are going to require employment or day services after special education.
•  You need to sign up for the PUNS if you need or want a community living opportunity.

The Illinois Department of Human Services (DHS)  is implementing a statewide process to determine the number of developmentally disabled Illinois residents who are in need of services.

The PUNS process (Illinois Prioritization of Urgency of Need for Services) will allow Illinois to establish a database of developmentally disabled individuals and also prioritize their need for services. DHS has hired a consultant, Ms. Celia Feinstein, to oversee this process and initiative. She has been very successful in five other states in obtaining additional funding. The process involves completion of a PUNS form. The form is to be completed with a face to face conversation with the individual to be served, and the individual’s guardian, primary care giver, or parent and the individual’s PAS agency. If you don’t know your pass agency visit www.dhs.state.il.us/OfficeLocator/ or call: Springfield: 217-524-0260 or Chicago: 312-814-2735.

For further information, contact the Illinois Life Span Project: 800.588.7002 or [email protected]
Thanks to Tony Paulauski for this info!

Illinois Life Span is the statewide information and advocacy coordination system for people with developmental disabilities.

Lifespan Resources http://www.illinoislifespan.org/
NAVIGATE THE ADVOCACY & SERVICES SYSTEMS
Protecting the Educational Rights of Our Children
Arc Training Calender 2004-2005
Parents' Guide - Educ. Rights of Students w/Dis.
Sibling Support Project Offers Workshops/Training
Promoting Incentives-Employment & Self-Employment
Navigating Medicare & Medicaid 2005
Keeping Medicare & Medicaid When You Work 2005
The Arc of Illinois Family Manual for Transition

Upstate Special Recreation Association hits roadblocks in Elgin

They started a nonprofit association of their own in August, the Upstate Special Recreation Association. Operating solely on donations and fund-raisers, the organization grew from 50 to 125 participants from in and around Elgin and offered everything from bowling, basketball, Special Olympic training and karaoke night. 

But because the city of Elgin provides traditional recreation programs, it also is obligated to pay for comparable services for the disabled, according to the Americans With Disabilities Act.

The Upstate group members said they hoped the city would pay them to run the services. But in February, the group suspended its programs after learning city staffers were leaning toward the Northern Illinois Special Recreation Association instead.
Stories continue from Daily Hearald and Elgin Courier

U.S. Department of Education announces fact sheets on the IDEA 2004 amendments and NCLB:

Example: Fact sheet on Changes to IEP laws:

Ask an Aspie at Odds & Friends

District Special Education Profiles are now available at

Fact Sheet on Psychotropic Drugs

An Autistic Savant Genius Explains

Disabled children should by forced to fail says New York Judge

Here is a great response to the claptrap. Judge: "Children Must Fail".
Mr. Greene also deflates other myths about special education.
January 30, 2005.  excerpt:
 

As Autism Cases Rise, Parents Run Frenzied Race to Get Help
New York Times, pro-school article about schools being swamped with autistic kids and parents asking for programs that work.
January 30, 2004:  http://www.nytimes.com/2004/01/30/nyregion/30AUTI.html

Vision Replacement Therapy Shows Promise for Rewiring the Brain

Vision Replacement Therapy helps adults who have lost vision from a stroke or other pathology.  The therapy  uses small but repeated prompting in the peripheral vision.  When a patient sees a dot in the periphery, he pushes a mouse button.  The brain, even for an adult, can utilize a different zone and wire it for a new purpose.  To me, this sounds a lot like the research done with FastForWord of Scientific Learning Corp., based on studies of Michael Merznich and BaxterLewis.  Their studies show that young children with auditory delays can accelerate auditory processing by playing games involving discerning differences in sounds and pressing a mouse button.  The VRT studies offer hope that repetitive auditory training can help will help older children as well.

Prior Written Notice under IDEA

A Potential Tool for Advocating for your Child

Special Education Form Letters

New Special Education Manual for Parents

This guidebook is filled with easy to read explanations of IDEA and other laws protecting your children.

One great idea if you live in Chicago: run for the Local School Council-which can hire or fire a principal who does or does not comply with the disabilities laws.

Special Religious Education Program (SPRED)

Number of students with autism in U.S. Schools explodes

Sept. 2004:  The Upstate Special Recreation Association will serve the same area that the Jayne Shover center covered, including Carpentersville, East Dundee, West Dundee, Bartlett, Streamwood, Elgin and South Elgin.

Autism: the hidden epidemic   on NBC

Possible reasons for the increase in the disorder  are explored. Also: host Michelle Ruiz visits a  family that has an autistic child.

  WMAQ (Broadcast Channel 5)  6:00 PM 02/19/2005
One of our AutismNews families will be featured!

NBC To Air Ten-Part Series on Autism

Autism: The Hidden Epidemic:  http://www.nbc5.com/autism/index.html??z=dp&dpswid=2275204&dppid=65195

Beginning Monday, February 21st, NBC will air a ten-part, week-long series on
autism spectrum disorders on the "Today Show".

Two segments will be aired each morning at approximately 8:10 EST and 9:10 EST.
Feb. 19 Autism the hidden epidemic (6pm-7pm)
Feb. 21: Early signs and causes
Feb. 22: Diagnosis: The Marino family story
Feb. 23: Education and emotional aspects
Feb. 24: Advocating and the law
Feb. 25: 'Autism Speaks' initiative

NBC's Today show is preparing a 10-part series that will run the week ofFebruary 21. The series will look at autismfrom a variety of angles, with segments exploring topics such as etiology,diagnosis, treatment, educational programs, affect on siblings, and how tobe an advocate for your autistic child. Be sure to tune in for the "How tobe the Best Advocate For Your Child" segment airing on February 24 featuringAutism Coalition board member, Gary Mayerson. He will be interviewed on hisnew book, "How To Compromise With Your School District Without CompromisingYour Child."

In conjunction with the Today show series, CNBC is airing a four-part seriesfrom Tuesday through Friday, Feb. 22-25. Segments will air at 12:30 PM and1:30 PM during CNBC's Power Lunch program. Titled "Autism: Paying thePrice," the CNBC series will focus on the financial implications of thedisorder, with segments on the financial impact on families, the roles ofgovernment and private funding for research, the opportunities in healthcareand pharmaceuticals and autism in the workplace. Both the NBC and CNBCseries will feature interviews with leading members of the autism community,from researchers and physicians to activists, educators and parents.Wednesday's segments will focus on intervention approaches, and will include Dr.Stanley Greenspan and parents whose children have benefited from theDIR/Floortime Approach.
Other DIR/Floortime advocates, both clinicians and parents, will be featured aswell in other segments. Later each day, MSNBC will feature live interviews.

Questions to ask Professionals

Legends and myths:

• A child must have an IQ in the average range to be considered LD
• The lack of a severe discrepancy is an exclusion from SPED
• The team must all agree in order to classify a child as SPED
• A disorder in basic psychological process does not impact IQ scores
• A 3-year reevaluation is done to determine if the child still has a learning disability
• Standardized tests must be administered to children during special education evaluations
• A child who does well on a standardized achievement test cannot be LD
• A child with a high IQ and lower achievement has a SLD
• A child with low IQ and higher achievement is an overachiever
• The IQ level of a child matters when one is identifying Speech/Language disorders

Innovative, Educational CD on Autism and Asperger's Offers Optimism and Hope

 "The CD offers a practical, informative, user-friendly way to learn about autism and Asperger's," says Lecia Macryn, who co-created the CD with Jeff LaDuke of Mindscape Productions. "You don't have to sit and crack open a book. You can pop it in a CD player and listen to it at your convenience, while you're doing other things like driving or working on the computer."

 Asperger's is a neurobiological disorder named for a Viennese physician, Hans Asperger, who published a paper in 1944 describing the autistic-like condition. Individuals with Asperger's typically don't have the severity of communication problems as those with autism, however, they show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They typically have obsessive routines and may be preoccupied with a particular subject of interest. Often overly sensitive to sounds, tastes, smells, and sights, people with Asperger's may prefer soft clothing, certain foods, and be bothered by sounds or lights that no one else seems to notice..

 "Living In The Spectrum" is an ideal primer for parents, relatives, teachers, employers and anyone wanting to learn about autism and Asperger's. Not the typical dry lecture, the 55-minute CD delivers a captivating and easy introduction to the subject matter. "It offers hope and encouragement," Macryn says. "It puts a whole new light and perspective on autism and Asperger's."

 "This CD is a breath of fresh air because it adds a new dimension to the total picture where doom and gloom is often the first emotion parents feel when their child has received a diagnosis of Autism," says, Laurence A Becker, PhD, Creative Learning Environments.
 Parent, Suzanne Rossi says: "This positive approach left me with renewed hope that someday autism might be viewed less often as a disability and more often as human diversity." Karen Simmons, CEO and founder of Autism Today and the author of "Little Rainman," is equally impressed. "What a fabulous resource you have put together! I sure wish I had this available 10 years ago."

 "Living In The Spectrum - Autism & Asperger's" is available for $16.95 online at www.mindscapeproductions.com or by phone via CDFreedom: 1-800-937-3397
 Audio samples of the CD are also available on the website. For more information or to request a press/media review copy, contact Lecia Macryn at (248) 288-2242.
 Mindscape Productions, L.L.C http://www.mindscapeproductions.com
 Phone: (248) 288-2242 Email: [email protected]

Volunteers needed for Eye Movement Research

• Study 1 brain function in autism: ages 8-55 for individuals w/PDD,
• (may include MRI brain imaging, must have a 2nd grade reading level.)
• Study 2, ages 0-55: Genetics of Autism. (Biological Testing Study 2)

Classroom Acoustics

Here are some links to get more information about classroom acoustics and
advocacy for students to support the needs of children with hearing loss
or impairments receive early intervention, appropriate educational placement
and/or services.

• http://www.classroomacoustics.com/
• http://www.agbell.org/advocacy.cfm

Illinois General Assembly passes new Autism Education Act of 2003.

Can create three new Centers to inform doctors and educators on best practices.

The No Child Left Behind Act's New Regulation will let schools leave our kids behind.

Check your child's IEP: If he or she gets and "alternate assessment," instead of participating  in the State-wide, standardized tests, your child will be left behind by schools.

Articles in the news

Lockport considers live-in care for autistic children
January 31, 2004. Copley Press

"For Some Parents, the Care Can't End"

The Tender Trap: Parents Devoted To a Disabled Child Confront Old Age
Failing Strength May Force The Communal Care They Dreaded for So Long
An article describing elderly parents taking care of aging autistic children, Jan. 07, 2004.

U.S. Dept of Education finds 15% of autistic children sexually abused.

• League of Special Education Voters
• Our Children Left Behind

Proposal : Can Autism by treated  by removing Copper?

To see this work-in-process proposal see Clioquinol.html.

New law to prevent school districts from discriminating against children the schools think should be medicated.

The new law reads:
"Each school board must adopt and implement a  policy
that  prohibits any disciplinary action that is based totally
or in part on the refusal of a student's parent  or  guardian
to   administer   or   consent   to   the  administration  of
psychotropic or psychostimulant medication to the student."

This new statute is important since many teachers do not know much about 
the meds they want the kids to take.  A similar law failed to pass Congress in 2003.

See article.  includes Dept of Ed OSEP view.

Ten Common Mistakes Parents Make During the IEP Meeting

1. Believing the professionals are the only experts.
2. Not making requests in writing.
3. Not being familiar with Prior Notice of the Procedural Safeguards
4. Requesting a related service instead of an assessment that supports the need for a related service
5. Accepting assessment results that do not recommend the services you think your child needs.
6. Allowing the assessment information to be presented for the first time at the IEP meeting
7. Accepting goals and objectives that are not  measurable
8. Allowing placement decisions to be made  before IEP goals and objectives are written
9. Allowing your child’s IEP meeting to be  rushed so that the school staff can begin the  next child’s IEP meeting.
10. Not asking a lot of questions

Hyperlexia helps scientists find how the brain learns to read.

Children should associate sounds with visual information.

Instead, they found that the boy used the same places in the brain that normal and above-average readers use, but he used them in a more intense way. The places were in the left side of the brain, in an area that in other studies appeared underused by children with dyslexia. Because hyperlexic kids can read well despite significant language delays -- and because they largely seem to use the same brain wiring, if more intensely, as regular readers -- the study suggests that reading can be learned through visual information rather than oral language.

This conclusion bolsters the practice of training dyslexic children to associate "sounds with visual information," says Guinevere Eden, director of the Center for the Study of Learning at Georgetown University, in Washington, and senior author of the study. In such training, dyslexic children are taught to decode writing by tapping out the sounds of a word, or using blocks of different colors to represent word sounds.

Abstract:
http://www.neuron.org/content/article/abstract?uid=PIIS0896627303008031
  Children with autism spectrum disorders in very rare cases display surprisingly advanced “hyperlexic” reading skills. Using functional magnetic resonance imaging (fMRI), we studied the neural basis of this precocious reading ability in a 9-year-old hyperlexic boy who reads 6 years in advance of his age. During covert reading, he demonstrated greater activity in the left inferior frontal and superior temporal cortices than both chronological age- and reading age-matched controls. Activity in the right inferior temporal sulcus was greater when compared to reading age-matched controls. These findings suggest that precocious reading is brought about by simultaneously drawing on both left hemisphere phonological and right hemisphere visual systems, reconciling the two prevailing, but seemingly contradictory, single hemisphere theories of hyperlexia. Hyperlexic reading is therefore associated with hyperactivation of the left superior temporal cortex, much in the same way as developmental dyslexia is associated with hypoactivation of this area.

Autism Patient wins court case against Aetna Insurance Co. for coverage for Speech, PT and OT.

A new Illinois statute mandates some coverage for autistic patients in insured plans!

... But does the statute actually hurt coverage issues overall?

These and other issues are discussed on the Autism News Insurance Law update page.

June 2006: new staute increases number of covered speach therapy sessions by 20 per year.

Experts say early education pays off: Study finds funds saved in long run

By Ronald Kotulak, Tribune science reporter.  August 3, 2003

story continues: Earlypays.html

Help requested for research questionairre:

"This questionnaire is designed to find out how families cope with hurts.  We especially want to know how you, as a parent, deal with negative reactions from others in relation to their child's disability.  If you

(a) are a parent of a child with autism
(b) you can think of at least one hurt that you have experienced related to raising a child with autism
(c) have not completed this study before;

we would really appreciate your participation in our study. The entire study should take around 15 minutes to complete.

By participating in this study, you can contribute to a field of research on the topic of family functioning in children with autism, which can lead to more effective workshops and educational interventions for families of children with autism, which will eventually lead to more funding for families of children with autism."

Fed OSEP finds Illinois State Board of Ed out of compliance with IDEA requirements.

1. ISBE’s monitoring procedures are not effective in identifying and ensuring the correction of all systemic noncompliance with the requirements of Part B.
2. ISBE has not reported to the public regarding the performance of students with disabilities in the alternate assessment.
3. ISBE has not ensured that all children with disabilities are educated in the least restrictive environment.
4. ISBE has not ensured that children with behavioral or emotional disabilities are receiving all of the services that they need as part of a free appropriate education, including psychological and counseling services.

New report questions fairness of the due process system in Illinois.

The results of Dr. Melanie Archer’s analysis were startling.

• Overall, school districts have prevailed in over two out of three special education due process hearings in the time period 1997 to 2002
• In the last 1 ½ years, the school districts have been increasingly prevailing at due process hearings, with the school districts prevailing in more than 72 percentage of cases in 2001
• Almost half of the hearing officers decided in favor of the school district, in excess of 80% of their decisions
• During the 1997 to 2002 time period, parents were successful in 49.6 percent of the cases when they were represented by an attorney, but only successful in 16.8 percent when unrepresented by an attorney.

Time to start your tax  crunching.

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