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West Virginia Guide to Accessing Autism Spectrum Disorder Services

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West Virginia Guide to Accessing Autism Spectrum Disorder Services The West Virginia Guide to Accessing Services for Individuals with Autism Spectrum Disorder Updated Spring 2017 A Product of WV Team Autism 1 ABOUT WEST VIRGINIA TEAM AUTISM Autism Spectrum Disorder (ASD) is the fastest growing disability in our nation. Approximately 1 in 68 children have an Autism Spectrum Disorder (CDC, 2014). Every state in the nation is asking “how can we best serve these individuals and their families?” It is the belief of many key players in the area of ASD in the state of West Virginia that the best way to make an impact on services in our state is through the collaboration of existing agencies, systems, and individuals who are dedicated to providing assistance, support and services for those with an Autism Spectrum Disorder. We knew we could make a difference working together. Early on, WV Team Autism identified several critical areas of need in our state: 1) providing a system of seamless services for children from 0 to 21, 2) providing a continuum of services for adults, 3) building effective early intervention programs and 4) increasing our capacity for teacher training. Another critical need identified was the need to help families find the appropriate supports and services they needed as soon after receiving the diagnosis as possible. This guide to accessing resources in West Virginia is one outcome of the collaborative effort to address this critical need. SPECIAL THANKS Special thanks to the WV Team Autism committee that worked on the revisions and updates for this document. Your work serves as a testament to your dedication to WV children, teens, adults and families experiencing Autism Spectrum Disorder Spectrum Disorder. Barbara Becker-Cottrill, Angela Bryson, Naomi Creer, Lesa Hines, Erin Lash, Diana Whitlock, and Sheila Zickefoose ABOUT THIS GUIDE We are pleased to offer you this booklet about services, resources and information for West Virginians with Autism Spectrum Disorder (ASD) and their families. The purpose of this booklet is to help you get started acquiring resources available to you and your child and to gain a better understanding of the educational system in West Virginia. West Virginia Team Autism members recognize, through personal and/or professional experience, the challenges facing families as they learn their child is diagnosed with ASD. We know it can be overwhelming and frustrating to secure the supports and services your child needs. Our goal is to make sure every parent receives the support and guidance they need and that support and guidance are available right from the beginning. This booklet is intended to be part of the file you have or will have developed to store information so that you can refer back to it as needed. We have included information that families have found helpful as they enter education and other service systems. You will be provided with specific information related to your individual needs and also be given the names of specific contact people in your area. We hope you find this guide a useful tool now and for the future. Updates will be completed in April and October each year. Please note that you will find the terms “autism” and “Autism Spectrum Disorder” used interchangeably. 2 Table of Contents Where do I start? ------------------------------------------------------------------------------------------------------------------------------------------ 5 Family Contact Information --------------------------------------------------------------------------------------------------------------------- 6 Step One– Learn About Autism Spectrum Disorder ------------------------------------------------------------------------------------- 7 Step Two – Become the Expert on Your Child -------------------------------------------------------------------------------------------- 9 All About Me for Young Children, Tweens and Teens --------------------------------------------------------------------------- 10 A Bit About Me for Older Teens and Adults ----------------------------------------------------------------------------------------- 13 Step Three – Accept Your Child for Who They Are ------------------------------------------------------------------------------------- 15 How Does ASD Affect My Child? ------------------------------------------------------------------------------------------------------- 16 Step Four – Enjoy Your Child and Celebrate Small Successes --------------------------------------------------------------------- 17 Step Five – Don’t Give Up! ---------------------------------------------------------------------------------------------------------------------- 20 Step Six – Be Consistent -------------------------------------------------------------------------------------------------------------------------- 23 Step Seven – Plan for Intervention ----------------------------------------------------------------------------------------------------------- 25 Step Eight – Think Inclusion ---------------------------------------------------------------------------------------------------------------------- 28 Step Nine – Find Help and Support ---------------------------------------------------------------------------------------------------------- 31 Step Ten– Think About Challenges in a New Way! ------------------------------------------------------------------------------------- 35 Next Steps Checklist ---------------------------------------------------------------------------------------------------------------------- 39 Step Eleven – Getting Organized ------------------------------------------------------------------------------------------------------------ 40 Organizing Your Child’s Education Documents ------------------------------------------------------------------------------- 41 Helpful Information for Crisis and Emergencies ----------------------------------------------------------------------------------------------- 44 Emergencies, Crisis and Safety -------------------------------------------------------------------------------------------------------------- 45 Autism Emergency Information Kit ---------------------------------------------------------------------------------------------------------- 47 Planning Before the Emergency (From FEMA) ----------------------------------------------------------------------------------------- 47 Emergency Preparedness for Adults with ASD ----------------------------------------------------------------------------------------- 48 Crisis Placement Information and Contacts --------------------------------------------------------------------------------------------- 49 Project Lifesaver ----------------------------------------------------------------------------------------------------------------------------------- 51 Securing Your Home for a Wandering Child --------------------------------------------------------------------------------------------- 51 Amber Alert of West Virginia ------------------------------------------------------------------------------------------------------------------ 51 Supporting Safety in the Home --------------------------------------------------------------------------------------------------------------- 52 West Virginia Autism Spectrum Disorder Services -------------------------------------------------------------------------------------------- 53 History of Autism Spectrum Disorder Services in West Virginia -------------------------------------------------------------------- 54 Service Options ------------------------------------------------------------------------------------------------------------------------------------------- 55 WV Autism Training Center --------------------------------------------------------------------------------------------------------------------- 56 WV Birth to Three ------------------------------------------------------------------------------------------------------------------------------------ 57 WV Department of Education ----------------------------------------------------------------------------------------------------------------- 58 Center for Excellence in Disabilities ---------------------------------------------------------------------------------------------------------- 60 Positive Behavior Support Project ---------------------------------------------------------------------------------------------------- 60 Parent Network Specialists Project --------------------------------------------------------------------------------------------------- 60 WV Assistive Technology Project ------------------------------------------------------------------------------------------------------ 60 Feeding and Swallowing Clinic -------------------------------------------------------------------------------------------------------- 61 Intensive Autism Service Clinic --------------------------------------------------------------------------------------------------------- 62 Early Childhood Lending Library ------------------------------------------------------------------------------------------------------ 62 Intellectual/Developmental Disability Waiver ------------------------------------------------------------------------------------------- 63 WV Department of Rehabilitation Services ----------------------------------------------------------------------------------------------- 64 Financial Resources ------------------------------------------------------------------------------------------------------------------------------------- 66 WV State Children’s Health Insurance (CHIP) Programs -----------------------------------------------------------------------------
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