The West Virginia Guide to Accessing Services for ...

The West Virginia Guide to Accessing Services for

Individuals with Autism Spectrum Disorders

WV Team Autism 2014

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ABOUT WEST VIRGINIA TEAM AUTISM

Autism spectrum disorders (ASDs) are the fastest growing disability in our nation.

Approximately 1 in 88 children have an autism spectrum disorder (CDC, 2008).

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 ASDs 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 booklet 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.

Barbara Becker-Cottrill, Angela Bryson, Naomi Creer, Lesa Hines, Erin Lash, 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 disorders 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 has an autism spectrum disorder (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 booklet a useful tool now and for the future.

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Table of Contents

Where do I start? --------------------------------------------------------------------------------------------------------------------------------------------------- 5 Family Contact Information---------------------------------------------------------------------------------------------------------------------------- 6 First Step ? Learn About Autism ---------------------------------------------------------------------------------------------------------------------7 Second Step ? 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 Third Step ? Accept Your Child for Who They Are --------------------------------------------------------------------------------------- 15 Fourth Step ? Enjoy Your Child and Celebrate Small Successes------------------------------------------------------------------18 Fifth Step ? Don't Give Up! ---------------------------------------------------------------------------------------------------------------------------- 21 Sixth Step ? Be Consistent---------------------------------------------------------------------------------------------------------------------------- 24 Seventh Step ? Plan for Intervention ---------------------------------------------------------------------------------------------------------- 26 Eighth Step ? Think Inclusion ----------------------------------------------------------------------------------------------------------------------- 29 Ninth Step ? Find Help and Support -------------------------------------------------------------------------------------------------------------33 Tenth Step ? Think About Challenges in a New Way! ----------------------------------------------------------------------------------37 Next Steps Checklist ---------------------------------------------------------------------------------------------------------------------------- 41 Eleventh Step ? Getting Organized-------------------------------------------------------------------------------------------------------------- 42

History of Autism in West Virginia ---------------------------------------------------------------------------------------------------------------------- 47

Service Options---------------------------------------------------------------------------------------------------------------------------------------------------- 49 WV Autism Training Center -------------------------------------------------------------------------------------------------------------------------- 50 WV Birth to Three------------------------------------------------------------------------------------------------------------------------------------------- 51 WV Department of Education -----------------------------------------------------------------------------------------------------------------------53 Center for Excellence in Disabilities Positive Behavior Support Project ------------------------------------------------------------------------------------------------------- 61 Training and Resources for Autism Insurance Navigation ------------------------------------------------------------------61 Parent Network Specialists Project ----------------------------------------------------------------------------------------------------- 62 WV Assistive Technology Project--------------------------------------------------------------------------------------------------------- 63 Feeding and Swallowing Clinic ------------------------------------------------------------------------------------------------------------- 64 Intensive Autism Service Clinic------------------------------------------------------------------------------------------------------------- 64 Early Childhood Lending Library ---------------------------------------------------------------------------------------------------------- 65 Intellectual/Developmental Disability Waiver --------------------------------------------------------------------------------------------- 66 WV Department of Rehabilitation Services ------------------------------------------------------------------------------------------------- 67

Financial Resources --------------------------------------------------------------------------------------------------------------------------------------------- 70 WV State Children's Health Insurance Programs ----------------------------------------------------------------------------------------- 71 WV Medicaid---------------------------------------------------------------------------------------------------------------------------------------------------72 WV Intellectual/Developmental Disabilities Waiver Children with Disabilities Community Services Program Social Security Disability --------------------------------------------------------------------------------------------------------------------------------73 WV Insurance Legislation ------------------------------------------------------------------------------------------------------------------------------75 Family Support ---------------------------------------------------------------------------------------------------------------------------------------------- 76

Resources------------------------------------------------------------------------------------------------------------------------------------------------------------- 78 Autism Society ---------------------------------------------------------------------------------------------------------------------------------------------- 79 Autism Speaks ----------------------------------------------------------------------------------------------------------------------------------------------- 79 WV Resources WV Autism Training Center -------------------------------------------------------------------------------------------------------------------- 79 Center for Excellence in Disabilities ------------------------------------------------------------------------------------------------------ 79

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WV Developmental Disabilities Council------------------------------------------------------------------------------------------------- 80 WV Division of Rehabilitation ---------------------------------------------------------------------------------------------------------------- 80 WV Parent Training and Information ----------------------------------------------------------------------------------------------------- 81 WV Advocates------------------------------------------------------------------------------------------------------------------------------------------81 WV Association of Retarded Citizens ----------------------------------------------------------------------------------------------------- 81 WV Bureau for Behavioral Health and Health Facilities ------------------------------------------------------------------------ 81 Mountaineer Autism Training Project__________________________________________________81 Diagnosis and Assessment Information ------------------------------------------------------------------------------------------------------- 81 Klingberg Neurodevelopmental Center ------------------------------------------------------------------------------------------------------ 83 Autism Information Specific to Age Group Early Intervention ? WV Birth to Three ------------------------------------------------------------------------------------------------- 84 School Age ? WV Department of Education ----------------------------------------------------------------------------------------- 84 Adults ------------------------------------------------------------------------------------------------------------------------------------------------------ 84 National Resources for Asperger's Syndrome -------------------------------------------------------------------------------------------- 85 Educational Approaches to Autism ------------------------------------------------------------------------------------------------------------- 86 Quality Indicators for ABA Programs----------------------------------------------------------------------------------------------------------- 87 Positive Behavior Support ---------------------------------------------------------------------------------------------------------------------------- 88 Definitions------------------------------------------------------------------------------------------------------------------------------------------------------------ 89 Team Autism Membership-----------------------------------------------------------------------------------------------------------------------------------91

Disclaimer: The purpose of this document is to offer helpful suggestions for families of children with autism spectrum disorders as they navigate the service delivery system in West Virginia. It is not the intent of West Virginia Team Autism to recommend any specific service or treatment over any other. This guide aims to provide information on state and other resources and is not intended as a comprehensive guide to all available service providers in all service delivery areas.

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Where do I Start?

Whether families have just received a diagnosis of an autism spectrum disorder (ASD) for their child or they have had the diagnosis for several years, there is one thing most families have in common; they are on a journey with different twists and turns, challenges and celebrations. If you are at the beginning of this journey, the amount of information you are receiving is probably overwhelming. It is important to remember that most people cannot absorb everything all at once, nor should they. Every family has different dynamics. Some have multiple children, multiple jobs and may be engaged in a variety of activities outside of the home. Time may be limited. It is OK to access new information related to your child's diagnosis and service options a little at a time. As one parent put it " It's a marathon, not a sprint." It is also important to know that while individuals with ASDs share some common overall characteristics, each individual is completely different from the next. What is effective for one individual may not work at all for another. Each individual has different strengths, abilities, interests and challenges. If there were one prescription for individuals with ASDs, we would all be using it. As you begin to investigate service options for your child, never hesitate to reach out to professionals and other parents for their input. Ask questions! Establishing positive relationships with others who understand ASDs can make all the difference in the world. But always remember, you are the expert on your child. No one knows your child like you do. And finally, as you get started on this journey, remember that success IS a journey. There are many tools and resources contained in this guide that we hope will make your journey to success just a little bit easier.

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