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Special Needs Network, Inc.

Advocacy

Advocacy and Family Support Groups

Autism Society (ASA) is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families and the professionals with whom they interact.
Phone: 1-800-3AUTISM (1-800-328-8476)
Location: Bethesda, Maryland
Website: www.autism-society.org

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Autism Society of Los Angeles

8939 S Sepulveda Blvd.,
Suite 110-788
Los Angeles, CA 90045
(562) 804-5556
http://www.autismla.org/

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Autism Speaks Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.

Autism Speaks Los Angeles Office
5455 Wilshire Boulevard
Suite 2250
Los Angeles, CA 90036
(323) 549-0500

http://www.autismspeaks.org

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The Autism Research Institute (ARI) is devoted to conducting research, and to disseminating the results of research, on the causes of autism and on methods of preventing, diagnosing and treating autism and other severe behavioral disorders of childhood.

Phone: 619-281-7165
Location: San Diego, CA
Website: www.AutismResearchInstitute.com

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Butterfly Effects provides therapy and tutoring services to individuals of all ages addressing challenges in the areas of academics, behavior, communication, daily living, social and life skills.
Phone: (888)880-9270
Location: Main Office in South Florida with branches nationwide.
Website: www.butterflyeffects.com

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The California Department of Developmental Services (DDS) is the agency through which the State of California provides services and support to children and adults with developmental disabilities. These disabilities include mental retardation, cerebral palsy, epilepsy, autism and related conditions.

Phone: 916-654-1690
Location: Statewide
Website: www.dds.ca.gov

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Center for Autism & Related Disorders (CARD) follows the principles of Applied Behavior Analysis (ABA), a treatment for autism that has been thoroughly researched and empirically validated by the scientific community, CARD, which was developed 15 years ago, develops individualized treatment plans.
Phone: 818-345-2345
Location: Tarzana, CA
Website: www.centerforautism.com

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Community Coaching Center (CCC), a 501(c) 3 nonprofit organization, was established in San Diego in 2003. CCC is a community participation and social skills development program for children on the autism spectrum that takes place after-school, on Saturdays, and during school breaks.
Location: San Diego, CA
Website: www.communitycoachingcenter.org

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Disability Rights Legal Center (DRLC) mission is to advance the rights of people with disabilities through education, advocacy, and litigation.

http://www.disabilityrightslegalcenter.org/about-us

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Educate.Advocate. To assist and support anyone with or connected to someone with special needs and/or disabilities at any age in the area surrounding San Bernardino and Riverside county in California. Our monthly guest presentations focus on: special education, regional center, department of developmental services, health and human services, medical insurance transition at all ages and other fields of significance which directly affect us.

educateadvocateca@educateadvocateca.com
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Epilepsy Support Network is committed to building a community of support to improve the lives of those affected by epilepsy through education, programs and advocacy. Based in Orange County, CA but supporting others nationwide.

Website: www.epilepsysupportnet.org

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Families for Early Autism Treatment (FEAT) is a non-profit organization of parents and professionals, which offers a network of support where families can meet each other and discuss issues surrounding autism and treatment options.
Phone: 916-463-5323
Location: Sacramento, CA
Website: www.feat.org

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GPS Advocacy offers radio show interviews with special Ed and disability experts, products, and services for parents of students receiving special education or disability services or who have special needs.

Phone: 800.295.9072 www.gpsadvocacy.com

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Latina Mami at this time is an all-volunteer run community organization that focuses on culturally competent support for Latina mothers. We have monthly meetings and pair women up with others for peer support and provide volunteer advocacy as we are able. We do try to focus on formal methods of advocacy for Latina mothers, since we feel their voices are usually not heard and/or are drowned out by systemic barriers. To that end, while our meetings focus on the emotional aspects that mothers face, we primarily assist with the technical aspects of letter and complaint writing and advocacy at their meetings if we are able. The first part of the process is for a mother to attend one of our monthly platicas.

Phone: 213.290.4312  Website: www.latinamami.org

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McClain Advocacy: Special Education Advocates speak or write in support of, on behalf of, or in defense of families with children who have academic, behavioral and/or emotional challenges that affect their educational and social development.

Contact via Website: www.specialeducationadvocates.com

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Moms Fighting Autism is an online free interactive website that host webinars each month from experts on autism.

(714) 335-8176
http://www.momsfightingautism.com/

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National Alliance of Autism Research (NAAR) is dedicated to funding and accelerating biomedical research focusing on autism spectrum disorders.
Phone: 1-888-777-NAAR
Location: Princeton, NJ
Website: www.naar.org

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National Dissemination Center for Children with Disabilities NICHCY is the center that provides information to the nation on: disabilities in children and youth; programs and services for infants, children, and youth with disabilities; IDEA, the nation’s special education law; and research-based information on effective practices for children with disabilities.

1825 Connecticut Ave NW, Suite 700
Washington, DC 20009
(800)695-0285
http://nichcy.org/

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Navy Family Fleet Support Center: FFSC is the Navy’s primary agency for the delivery of an array of human services intended to enhance the stability, resiliency and self-sufficiency of military service members, reservists, retirees, and their families in support of recruitment, retention, operational readiness, and quality of life goals. Services are primarily offered as individual consultations, resource referrals, counseling sessions, and workshops. Programs and services are offered on San Diego’s three major Navy installations and through FFSC’s operations and partnerships in the community to ensure customers are afforded relevant, informative, empowering, confidential, no-cost services at locations and times convenient to them.

Website: www.cnic.navy.mil/navylifesw
Facebook: www.Facebook.com/FFCPSanDiego

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The Organization for Autism Research (OAR) was created in December 2001 – the product of the shared vision and unique life experiences of OAR’s seven founders. Led by these parents and grandparents of children and adults on the autism spectrum, OAR set out to use applied science to answer questions that parents, families, individuals with autism, teachers and caregivers confront daily.

Website: www.researchautism.org

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Pacer Center The mission of PACER Center (Parent Advocacy Coalition for Educational Rights) is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

8161 Normandale Blvd.
Bloomington, MN 55437
(888)248-0822
http://www.pacer.org/

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Parents Helping Parents (PHP) is a family resource center to help children with special needs receive the resources, love, hope, respect, health care, education, and other services they need to reach their full potential by providing them with strong families, dedicated professionals, and responsive systems to serve them.

Phone: 408 727-5775
Location: Santa Clara, CA
Website:www.php.com

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The Schrader Autism Foundation mission is to provide financial subsidy and educational assistance to families with children having Autistic Spectrum Disorders (ASD); To independently, or in partnership, implement learning tools and life skills programs; To successfully prepare ASD Children for independent life in today’s society.

http://www.schraderautismfoundation.org

Struggling to Learn, Inc
PO Box 1394
Wall Township, NJ 07719

Phone: 877-229-6150
Email: info@schraderautismfoundation.org

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SENG Supporting Emotional Needs of the Gifted mission is to empower families and communities to guide gifted and talented individuals to reach their goals: intellectually, physically, emotionally, socially, and spiritually.

P.O. Box 488, Poughquag, NY 12570
(845) 797-5054
http://www.sengifted.org/

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Smart Kids with Learning Disabilities is a non-profit organization dedicated to empowering the parents of children with learning disabilities (LD) and attention-deficit disorder (ADHD). Their mission is to educate, guide and inspire families of children with learning disabilities or ADHD—and to change the perception of learning disabilities as a stigmatizing condition.

(203) 226-6831
http://www.smartkidswithld.org

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Talk about Curing Autism (TACA) provides the information and connection to improve the quality of life of people with autism in their families and builds the autism community by connecting people with each other and the professionals who can help them.

Phone: 949-640-4401
Location: Newport Beach, CA
Website: www.tacanow.org

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Team of Advocates for Special Needs (TASK) is a nonprofit charitable organization whose mission is to enable individuals with disabilities to reach their maximum potential by providing them, their families and the professionals who serve them with training, support, information, resources and referrals, and by providing community awareness programs

100 W. Cerritos Ave.
Anaheim, CA 92805
(866) 828-8275 (toll-free in California) or (714) 533-8275
http://www.taskca.org/

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Train 4 Autism is a foundation dedicated to bringing together a community of athletes, physically active, and socially conscious people who are committed to raising awareness and funds for research and treatment for those living with Autism and their families.

Website: train4autism.org

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Wrights Law Parents, educators, advocates, and attorneys go to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities

http://www.wrightslaw.com/

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LIST OF SPECIAL EDUCATION ORGANIZATIONS

Free Autism Spectrum Disorder (ASD) Materials from Centers for Disease Control and Prevention


 

 

Advocacy Checklist

What is advocacy?

Advocacy is an action directed at changing the policies, positions or programs of any type of institution.

Advocacy is pleading for, defending or recommending an idea before other people.

Advocacy is speaking up, drawing a community’s attention to an important issue, and directing decision makers toward a solution.

Advocacy is working with other people and organizations to make a difference.

Advocacy is putting a problem on the agenda, providing a solution to that problem and building support for acting on both the problem and the solution.

Advocacy can aim to change an organization internally or to alter an entire system.

Advocacy can involve many specific, short-term activities to reach a long-term vision of change.

Advocacy consists of different strategies aimed at influencing decision-making at the organizational local, state, national and international levels.

Advocacy strategies can include lobbying, social marketing, information, education and communication, community organizing, or many other “tactics.”

Advocacy is the process of people participating in decision-making processes which affect their lives.

CLICK HERE TO DOWNLOAD: EFFECTIVE ADVOCACY CHECKLIST By Stephanie Vance


 

 

Advocates

 

Emily Iland

http://emilyiland.com/

emilyiland@gmail.com

 

 

Faith Golden M.A., Child Development Specialist

www.itsaparentparenting.com

CA State Credentialed Teacher, Single Subject, Specialist Credential, 1998

It’s Aparent, Parenting and Behavior Specialists

16430 Ventura Blvd., Suite 110

Encino, CA 91436

818.995.9757

 

 

Gold Standard Advocates

http://www.theiepadvocates.com/

 

 

Kristen Jacobsen

http://autismdeservesequalcoverage.com/About.html

info@autismdeservesequalcoverage.com

 

 

Loren R Grossman

310.314.2113

loren@lorenrgrossman

http://lorenrgrossman.com/

 

 

Lori Waldinger, Elissa Henkin and Lee Englander, Parent Advocates/Educational Consultants

(818) 957-0332

2354 Teasley St.
La Crescenta, CA

 

 

Monica Holloway

http://www.monicaholloway.com/

JessBlockPR@gmail.com

 


 

 

Emergency Regulations

March 12, 2013
NEWS RELEASE
Emergency regulations for children’s autism treatment approved

SACRAMENTO – Insurance Commissioner Dave Jones today announced that the Office of Administrative Law (OAL) approved the emergency regulations aimed at eliminating delays and denials of coverage for autism treatment. Commissioner Jones issued these emergency regulations to protect children diagnosed with autism and their families from the emotional, physical and financial harms caused by insurer denials or significant delays in autism treatment, which has reached crisis proportions in California.
“I am extremely pleased that the Office of Administrative Law has approved our emergency regulations,” said Commissioner Jones. “These emergency regulations will ensure that insurance companies cover medically necessary treatment required by the Mental Health Parity Act and Senator Darrell Steinberg’s autism treatment legislation. Autistic children and their families should now, without delay, receive the transformative treatment that will enable them to succeed in school, their families, and communities.”
The California Mental Health Parity Act was intended to provide adequate private health insurance coverage and benefits for mental illnesses. The legislature found that autism is one of several severe mental conditions that are seriously disabled. Failure to provide adequate coverage in private health insurance policies significantly increases expenditures by state and local government for medical treatment, special education and other services.

 

Later laws, such as SB 946 (Steinberg), signed by Governor Jerry Brown in October, 2011, reconfirmed the mandate for health insurers and HMOs to provide behavioral health treatment for autism. This emergency regulation is expected to benefit thousands of California’s children and families and save California taxpayers approximately $138.8 million to $197.8 million over the next year in costs that should properly be borne by insurers. These emergency regulations are the latest in a series of actions taken by Commissioner Jones to make sure autistic children can receive behavioral therapy treatment.

 

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Media notes:
For medically necessary treatment of autism, the regulations will be:
• Prohibit visit limits on coverage;
• Prohibit dollar limits on coverage, unless they apply equally to all benefits under the policy;
• As for behavioral health treatment, prohibit denials or unreasonable delays on the basis of a claimed need for IQ testing, or on the grounds that such treatment is experimental, investigational, or educational, or would not be provided or supervised by a licensed individual, provided that individual is certified by a national accredited entity such as the Behavior Analyst Certification Board.

 

The effective date of these emergency regulations is March 11, 2013.

 

CDI Notices, Alerts and Website Information:

CDI issued a Notice to Insurers regarding Enforcement of Independent Medical Review Statutes on
May 17, 2011.

 

CDI also issued a notice to consumers advising them if a claim has been denied because the insurer determined the treatment is not medically necessary or was experimental, the consumer may appeal the denial with their insurance company and then request an Independent Medical Review (IMR) from the Department of Insurance at no cost.

 

CDI issued a consumer alert on the treatment of autism in October of 2012.
For more information about CDI’s action to secure insurance coverage for autism, please visit our Web site at www.insurance.ca.gov.

 

 

 


 

 

Tips For a Successful IEP Meeting

1. Know that federal law entitles your child to an education that prepares him/her for further education, employment, and independent living.

2. Realize that you are a vital member of your child’s IEP team and you know your child best.

3. Always bring copies of reports, homework, assignments and other work to show child’s current academic and functional levels of performance.

4. Ask teacher to maintain a daily classroom log that contains information regarding school day.

5. Establish a method of communication with teacher – e-mail, faxes, weekly reports, which describe goals worked on, method used and progress.

6. Request copy of written notice when school proposes to change or refuses to change program.

7. Always request an independent evaluation if you disagree with district’s assessment or decision to terminate or change service.

8. Provide district with written notice 10 days prior to you obtaining private assessment.

9. Ensure that private and or independent assessor perform a classroom and home, if necessary, observation in addition to evaluation of the child.

 

 


 

 

Legislative Bills

 

California SB.946

Links to understanding SB.946:

Vista Center for Behavioral Analysis

Autism Speaks

SARC

 

 

Health Care:

Obama’s Health Care Reform Plan

 

 

Pending Bills:

 Act Today: Autism Care and Treatment for Military Families