the

SpectrumThe Newsletter of the autism society of north carolina Volume 27, No. 2 issn 1044-1921 Summer 2011 Therapeutic Horseback Riding Page 23

Inside... IEP Tips Residential Placement What You Need to Know about Managed Care Mission Statement The Autism Society of North Carolina

is committed to providing support and 505 Oberlin Road, Suite 230 • Raleigh, NC 27605-1345 promoting opportunities which enhance 919/743-0204 • 800/442-2762 • Fax: 919/743-0208 www.autismsociety-nc.org the lives of individuals within the autism spectrum and their families. Board of Directors VISION STATEMENT Chair Martina Ballen The Autism Society of North Carolina strives to create a community where people Immediate Past Chair Dr. F. Whitney Jones within the autism spectrum and their families receive respect, services, and Vice Chair supports based on individual Beverly Moore

differences, needs, and preferences. Secretary Elizabeth Phillippi

Privacy Policy Treasurer The Autism Society of North Carolina Sharon Jeffries-Jones respects the privacy of its members and those who receive our publications. We do Representatives Sharon Blalock not sell or otherwise share our mailing John Cavanaugh list, email notification list John Delaloye or any other personal information with Stephen Dougherty other businesses or organizations. Whitney Griffin Susanne Harris Ruth Hurst Monique Justice Darryl R. Marsch Dr. Tom McIver TABLE OF CONTENTs David Moser 3 A Message from the CEO Steve Scoggin 5 fundraising & events Scott Wells

8 A Look at the South Central Community Representatives region Scott Taylor 10 bookstore News 12 creating an IEP Notebook The Spectrum 14 NC General Assembly Legislative The Spectrum (ISSN 1044-1921) is published in session Wrap-Up January and July by the Autism Society of North Carolina, Inc. © 2011. All rights reserved. Viewpoints 16 1915 b/c Waivers and Autism: What expressed are not necessarily those of the Autism does Managed Care Mean to Me or Society of North Carolina, Inc. or its Board of my child? Directors. 17 volunteer Spotlight Editor: Terry Ramsay 18 chapters Update Graphic Designer: Brooke Tonkin

20 bilingual Connections Reader input, photographs and articles are welcome. 22 mini-Camp Weekends Provide a Articles can be emailed (preferred), faxed or mailed. Please send any correspondence regarding slice of Summer Camp, Year-Round this publication to Terry Ramsay, Autism Society 23 summer Camp of North Carolina, 505 Oberlin Road, Suite 230, Raleigh, NC 27605 or Fax (919) 743-0208 or email 24 understanding Residential [email protected]. placement 25 donations The Deadline for Submissions for the Winter 2012 Edition is January 1, 2012.

2 www.autismsociety-nc.org www.autismsociety-nc.org What are the needs of the autism Message from community? the CEO From my work with individuals with autism and their families, I have learned that the needs of people with autism are the same as everyone else: supportive relationships, appropriate education, adequate housing, access to quality healthcare, meaningful employment, and opportunities to live, love, work, and play in the community. The difference lies in the various types of supports required to help individual and families meet these needs. That is where ASNC can help.

What has ASNC achieved in response to As I write this, the long session of these needs? the General Assembly has concluded. ASNC provides a variety of high Undoubtedly, this was one of the most value, quality supports and services to difficult economic years that North individuals on the autism spectrum, their Carolina has faced in recent history families, and those who work with them. with the expiration of federal stimulus assistance and the temporary tax This past fiscal year, ASNC staff: increases. The legislature and Governor - Responded to over 16,000 annual calls were forced to make budget decisions for assistance. that will impact many North Carolinians, - Attended over 400 school conferences including individuals with autism and (IEP meetings) with families. their families. Jen Mahan, Director of - Conducted over 240 parent training Government Relations, has provided a workshops teaching parents how to better thorough summary of this session on help their child and themselves. page 14. - Met with nearly 400 families in crisis to provide guidance in hopes of preventing Although the session has ended, ASNC’s institutionalization in a state-run facility advocacy efforts will continue with our or hospital emergency room. elected leaders, as we redouble our efforts - Presented autism awareness information to educate them on the need for supports to over 150 community groups. and services for individuals with autism - Provided support to military families and their families. We will also continue stationed on bases throughout NC. our fight for autism health insurance - Provided housing for 25 adults in reform in North Carolina. environments where the residents learn life skills while remaining in their The autism community faces challenging communities. times with the ever increasing number of - Provided respite care through Camp individuals with autism and the decreasing Royall for over 350 children and adults community and financial resources to during the summer and programming for support them. This new reality has shaped 650 individuals throughout the year. many discussions this year among ASNC - Provided job training to over 80 families, Chapters, staff, and the Board individuals with autism. of Directors as we plan how ASNC - Provided community-based services to will fulfill its mission in this difficult over 375 individuals on a daily basis in a environment. These discussions have variety of settings. centered around five key questions, - Provided 56 trainings to over 2,000 outlined below. The answers to these professionals including teachers, questions will serve as a guide for us as healthcare professionals, other service we navigate this new terrain. providers, fire, police, and EMT

www.autismsociety-nc.org www.autismsociety-nc.org 3 personnel, and childcare professionals What have we learned? who work with children under 5. We need to constantly look for - Provided an annual educational efficiencies, collaboration, and conference for over 500 parents and partnerships while keeping the needs professionals. of individuals and families we serve at the forefront. By working with ASNC While these numbers are impressive, the families, self-advocates, Chapters, and outcomes for the individuals and families other organizations with similar priorities, are what is important. Through our we will be able to make the best use of efforts, there has been increased public existing, albeit diminished, resources. awareness of autism, earlier diagnosis of Working together, we will identify children with autism which leads to better creative ways to provide the support and lifelong outcomes, improved medical care services individuals and families deserve. to individuals with autism, more suitable care from first responders, increased Where are we going? independence in a variety of settings, For the past 40 years, ASNC has been the increased capacity in the community for best resource for individual and families care, a better educational environment, with autism. In the future, we will less institutionalization, higher community continue to fulfill our mission by focusing integration, meaningful and gainful on advocacy, education and training, and employment, satisfying recreational the provision of direct services. activities, and support to families resulting in a better home environment. I am confident that ASNC will rise to the challenge of implementing innovative What makes ASNC different from other approaches to meet the emerging needs autism organizations? of people living with autism. We have Although there are many other autism a deeply committed group of staff and groups within North Carolina, ASNC is volunteers that works hard to advance the the state’s largest and oldest advocacy interests of the autism community in our organization focusing on support and state. services to individuals with autism and their families that is tailored to their My best, unique situation. ASNC advocacy, training, and services help increase the independence and self-sufficiency of individuals on the autism spectrum. Tracey Sheriff People with autism have unique needs and Chief Executive Officer our supports and services reflect the need for individualization. We strive to provide person-centered support and services that are based upon evidence-based practices.

This past year, we have worked hard to raise the private and corporate donations we need to support our mission. A unique factor that distinguishes ASNC from other organizations is that every dollar that we raise stays in North Carolina. We’ve been able to increase our fundraising efforts considerably while keeping our general administrative costs low (10.5%), our fundraising costs low (2.8%), and directing 86.7% of our operating expenses towards mission related programs.

4 www.autismsociety-nc.org www.autismsociety-nc.org The 7th Grade Social Studies Class Fundraisers & & Student Government Association Events of N.L. Dillard Middle School in Yanceyville collected money over Upcoming: several days to benefit the Camp Royall On August 13, the Burlington Royals Scholarship Fund. We would like thank will host their 2nd Autism Awareness the students, teachers, and parents of N.L. Night and a 5K fundraising race in support Dillard Middle School for their support of of ASNC. The Royals ASNC! will wear jerseys with special Autism Awareness The Keystone Insurers Group patches and host in-game recently hosted a golf tournament in awareness promotions. Greensboro with proceeds supporting the Please email David Autism Society of North Carolina. The Laxton at dlaxton@ tournament was held on May 24 at the autismsociety-nc.org for Grandover Conference Center and over ticket information. 100 golfers came out to enjoy the spring weather and evening reception. Many Calling all car enthusiasts! The 3rd thanks to Jim Trotter and the Keystone Annual Stangs-R-Us Car Show will Insurers Group for hosting an outstanding be held on Saturday, August 27, at Dunn event and for their continued support of Benson Ford with proceeds supporting the ASNC! Autism Society of North Carolina. Bring your family and enjoy the early & late Thanks to Clear Choice Home model cars, live music, kids’ inflatables, Inspection and owner Jayme Clark of and cornhole tournament. The event Raleigh for their fundraising efforts this begins at 9:00 am and awards will be spring. The Autism Society of North presented at 3:00 pm. Please visit www. Carolina received a portion of proceeds stangs-r-us.com for more information on from every home inspection they the event. We hope to see you there! performed during the month of April. For more information on Clear Choice Recent: Home Inspections, please visit www. The Autism Society of North Carolina clearchoicehi.com. and several Minor League Baseball clubs partnered over the summer to increase The Eastern Run/Walk for Autism autism awareness and support for the The Pitt County Chapter of the Autism organization. Society of North Carolina hosted its 3rd Annual Eastern Run/Walk for Autism on On July 15, the Charlotte Knights hosted Saturday, April 2. This year’s event was their 2nd annual Autism Awareness Night held at the Town Commons in Greenville with presenting sponsor New York Life. and featured over 600 runners, 31 teams, The Knights raised over and over 50 volunteers. This event has $5,100 to support ASNC raised over $32,000 to date with proceeds programs. The club made being used to help support programs for the game “sensory-friendly,” individuals with autism living in Eastern auctioned off special jerseys, North Carolina. and provided an autism resource area. Thanks to our participants, donors, sponsors, volunteers, Board of On August 5, the Durham Bulls hosted Directors, and staff for making this their annual Autism Awareness Night with such a successful event. We are presenting sponsor Banner ‘47. The Bulls continuing to accept donations at www. donated a percentage easternrunwalkforautism.org. Please of tickets, merchandise support the businesses listed below and sales, and auctioned off thank them for their support of the Pitt jerseys from ‘Star Wars County Chapter of the Autism Society of Night’ to support ASNC. North Carolina. Continued on page 6 www.autismsociety-nc.org www.autismsociety-nc.org 5 Plans are underway for the 2012 Eastern The 2012 Coastal NC Run/Walk for Run/Walk for Autism which will be held Autism will be held on Saturday, April 21, on April 28, 2012. If you are interested at Mayfaire Town Center. Contact Heather in helping to plan this event, please Hargrave at hhargrave@autismsociety-nc. contact Heather Hargrave at hhargrave@ org if you are interested in participating or autismsociety-nc.org. helping with this event.

Please support the business listed below Please support the business listed below who sponsored the Eastern Run/Walk for who sponsored the Coastal NC Run/Walk Autism: for Autism:

Platinum Sponsor Level Visionary Sponsor Level Action Advertising Halley White, DDS, MPH Art for Autism Seed Body Care Graham Nuckolls Brown, Attorney at Law Champion Sponsor Level Silver Sponsor Level Atlantic Packaging Group ASAP Photo Corning Carolina Wealth Management Mayfaire Town Center PORT Human Services PPD The Daily Reflector R.A. Jeffreys Try Sports Bronze Sponsor Level East Carolina Parent Magazine Advocate Sponsor Level Eastern Psychiatric & Behavioral Allstate – Randy Gibson Specialists Anlyan & Hively Metrics Jim & Marsha Bonner Play Date CAPEFEAR Kids Road ID Happy Days Diner Jim & Lesley Hively 1st Annual Coastal NC Run/Walk for New Hanover Regional Medical Center Autism The Autism Society of North Carolina Friend Sponsor Level and GHA, Inc. teamed up on May 14 Brew Thru to host the 1st Annual Coastal NC Run/ Carolina National Golf Club Walk for Autism. The event was held at High Speed Welding Mayfaire Town Center. We had over 325 Mr. and Mrs. W. Howle participants and 31 teams for the 5K and The Law Office of Richard Poole one mile event, and over 50 volunteers OT Solutions came out to lend their support. With REEDS Jewelers nine vendors, the Chick-fil-A mascot, Simply Home and children running in the Kids Dash, Tongue & Groove there was a festive, family atmosphere Wilmington Dermatology throughout the race.

ASNC and GHA, Inc. both provide Calling All Volunteers! training and services benefiting individuals with autism and their families. ASNC has volunteer opportunities The money raised from this event will with special events, office help, support these services for people with and awareness fairs. Please autism in the Coastal NC area. Donations contact Alison Davis at adavis@ are continuing to be accepted at www. autismsociety-nc.org or 1-800-442- coastalncrunwalkforautism.com. To date, 2672, ext 1101, to learn more. we have raised over $34,000.

6 www.autismsociety-nc.org www.autismsociety-nc.org Many thanks to the following donors to Camp Royall. With the help of the following individuals, businesses, and foundations, ASNC provided over $154,000 in scholarships, added a summer Therapeutic Riding Program, improved our facilities, and purchased a much needed tractor!

$25,000 and Above $500-$999 Donor Level Teer Family Scholarship Donor Level ASNC Staff Campaign Ellen and Chris Eaton Mary Louise and John Burress Chatham County Soccer Blake and Bret Ellis Carolina Brewmasters League Amanda and Kris Lloyd Ocktoberfest The Eisner Charitable Fund, Lyda and Rich Mihalyi Foundation For The Carolinas/ Inc. Kristin Teer The Longleaf Fund Elite Exterior Services, Inc. Mildred and Dillard Teer Kim and Scott Weiner Kohl’s Nancy Teer Lesley and Michael Graves Robb and Susan Teer $20,000- $24,999 Kelly and Mike McCrann Roy and Susan Teer Donor Level Phillip Julian Guy and Jessica Whilden UPS Foundation Jeanne McGovern and Pam and Steve Whilden Michael Schwenk Stephen Whilden $10,000-$19,999 Donor Level $250-$499 Donor Level Crabby Hatters Scholarship Triangle Community Anonymous Donors Cape Fear Insurance Foundation “Send A Kid to Kiwanis Club of Lee County, Associates, Inc. Camp” Inc. Century 21 Brock & Western Highlands LME Paul Phillippi Associates Seventh Grade Social Studies Coastal Insurance & Realty, $5,000-$9,999 Donor Level Class/N.L. Dillard Middle Inc. Carolina Hurricanes School Gerri and Michael Cox Foundation/The Kids N Smith Breeden Associates, Jean Cox Community Foundation Inc. Faye Brock Ronald McDonald House Faye Brock Realty Charities of NC $100-$249 Donor Level Susan and Timothy Gibble Marjorie Angell Cynthia and David Hewett $2,500 -$4,999 Donor Level Selina and Brad Barker Howard Eye Associates, BB&T Foundation Darrell Boyette ODPA The Charlotte Observer/ Jean and Mark Calkin Patricia Lewis-Burrell Partners in Out of School Steve Cory Cynthia and Phillip Long Time Heidi and Rodger Frears Ada and Gene Marshburn Community Foundation of Patrice and Thomas Galvin Marie Marshburn Greater Greensboro Diane and David Gibbs Michelakis, Wilharm & Marion and Wensell Grabarek Harrington, D.D.S., P.A. $1,000-$2,499 Donor Level Kate and Harvey Hall Deanna Minter Emmett Aldredge/Machine & Jackson County Psychological Kat and David Moncol Welding Supply Company Services, P.A. Joseph Nester ATO-XI Foundation Buster Martin Candy and Greg Padgett Chapel Hill/Carrboro YMCA Sharon and Randy Martin Sadie Presser The Community Foundation Joe McCollum R & R Insurance Services, Of Western North Carolina/ Eric Mihalyi Inc. The Penny Fund Carol Mims San Felipe #9 Janet and James Cozart Sam Miller Sheila and Ronald Smith The Eddie and Jo Allison Maureen and Rob Morrell South Brunswick Islands Smith Family Foundation, Inc. Maryanne and Julian Woman’s Club Goodmortgage.com Rosenman Taxpro of Southport, Inc. Guilford County Chapter RSM McGladrey, Inc. Yvonne and David Truman ASNC Sarah and Leonard Safrit W.T. Cox Subscriptions The Mary Duke Biddle Peggy and Ray Shufelt Kay and Dan Walker Foundation Robin Shovlin Lyda and Rich Mihalyi Ann and Charles Stewart If you would like more Elizabeth and Jeffrey Phillippi Lisa and Robert Vaccarelli information about donating Elizabeth and Kenneth Belynda Veser to the camp scholarship fund, Steinberg Family Scholarship Sallie and Harry Walker please contact Beverly Gill at Pfizer, Inc Brenda White 919-865-5056, or PPD Development, LP Lil Williams [email protected]. Gina and Herber Windley www.autismsociety-nc.org www.autismsociety-nc.org 7 different lesson plans for each group. A Look at the The teachers provide the necessary tools such as visuals, modeling, and hands-on South Central activities in order for the participants to Region be successful. The FTCC teachers focus on social skills, life skills, English, math, The South Central Region includes reading/language, and sign language. areas in and around Fayetteville and Laurinburg. To enhance social skills, participants have volunteer opportunities such as Academy of Life-Skills Development greeting visitors in the lobby area and (ALSD) volunteering at fire stations, food banks, In 2009, the Autism Society of North the Department of Defense at Fort Bragg, Carolina opened the Academy for and nursing homes. Several participants Life Skills Development (ALSD) in are employed at local businesses such as Fayetteville. ALSD is an adult vocational Food Lion, AHEC, various restaurants, day program for individuals with Autism and a mobile cleaning company. Spectrum Disorder, with the goal of assisting adults in The program has expanded since opening. developing transferable In 2011, ALSD acquired job skills. The program additional is designed to enhance space due to the the participants’ increased number quality of life by of participants. providing educational ALSD has grown and employment through partnership opportunities with with Vocational ongoing support. Rehabilitation, and Ultimately, the goal the compensatory is for the individual to education unit has be as independent as grown through the possible, and be able relationship with to maintain a job in FTCC. a variety of settings, such as libraries, The program capacity restaurants, clerical is 30 participants, and work, or janitorial there are currently work. five females and 18 males enrolled Each ALSD participant at ALSD. There is is evaluated at admission to determine an no waiting list and ALSD is accepting individualized, person-centered plan for participants. The program accepts CAP success in community life. The vocational funding as well as a fee-for-service component of the program consists of four option. Contact Thomasina McKenzie at training units: Clerical, Food Services, [email protected] or 910- Compensatory Education, and Facilities/ 864-2769 for more information. Environmental. All plans include a training unit, or combination of units, for The Learning Center the participant to work on each day. The Learning Center is a licensed before/ after school and summer developmental The Academy for Life Skills Development day service for youth who are at risk for partners with Fayetteville Technical developmental delays, developmental Community College (FTCC) to provide disabilities, or atypical development. The two specialized teachers who are trained children that we serve range in age from to assist participants in meeting their 5 to 17. The program provides individual/ individualized educational needs. The group habilitative programming and FTCC teachers have developed four recreational activities.

8 www.autismsociety-nc.org www.autismsociety-nc.org Residential Services Functioning Autism (HFA) or Asperger’s. We provide residential services through This is offered weekly during the school two Supported Living Homes in year and costs $20 per month. Fayetteville. Six men with autism reside • Social skills groups for adults with in Chestnut Hills Home and Murray Fork HFA/Asperger’s. These groups meet in Home. These men all receive supported the evenings, year-round. The cost is employment provided by ASNC. $20 per month, and outings may involve an extra expense. Recreational Groups Bowling takes place The South Central on Fridays 4:00- Region is pleased to 5:00; the fee is $3 offer the following per game. recreational groups: • Art and music/ • Adapted physical movement classes education classes are offered in the for all children on summer for $5 per the spectrum. This is class. offered weekly after school, is free of charge, and is a year- For more information about South Central round offering. Regional Services, please contact Steve • Social skills groups for middle King at [email protected] or school and high school kids with High 910-864-2769.

5K • 1 Mile • Kids’ Dash Saturday, October 8, 2011 Moore Square, Raleigh 9:00 am

www.trianglerunwalkforautism.com Run • Walk • Form/Join a Team • Donate • Volunteer

www.autismsociety-nc.org www.autismsociety-nc.org 9 Practical Solutions for Bookstore News Stabilizing Students with Classic Autism to Be The ASNC Bookstore is the largest Ready to Learn: Getting nonprofit ASD-specific bookstore in the to Go! (BPRA08 Price: United States. We are constantly working $21.95) By Judy to expand our book and DVD inventory. Endow, MSW There is something for everyone, including parents, caregivers, teachers, An easy-to-use book that concentrates professionals, and self-advocates. For on two major areas of stabilization that a complete list of reviews, visit www. are critical for students on the spectrum: autismsbookstore.com. sensory regulation and visual supports. When the stabilization strategies that are Our newest titles include: outlined in this book are used correctly, students feel more regulated and Living Well on the supported. Continued use of the strategies Spectrum; How to throughout the day can help decrease Use Your Strengths to unwanted behaviors and optimize Meet the Challenges performance. of Asperger Syndrome/ High-Functioning The Aspie Teen’s Survival Autism (BLIV01 Price: Guide: Candid Advice $21.95) By for Teens, Tweens, and Valerie L. Gaus Parents, from a Young Man with Asperger’s Understanding how the brain works Syndrome (BASP34 and how personal strengths can be best Price: $19.95) By J. D. utilized can reduce the stress of life Kraus with Asperger’s Syndrome or High Functioning Autism (HFA). Gaus’s book Adolescence is a confusing time for offers advice on how to identify and everyone. For kids with Asperger’s, who reach goals that make life better. The often face social challenges, this can be book contains stories, questionnaires, the most difficult and hard to understand worksheets, and real life examples that period of their lives. J. D. Kraus has can help find a solution to everyday experienced this firsthand and has written problems. Included are methods that may a book full of practical advice that can help with recognizing and learning the help middle school and high school unspoken rules of socializing, improving students, both academically and socially. communication skills, organizing your The “Notes to Parents” section offers life, managing anxiety and depression, invaluable advice to parents, caregivers and strengthening relationships with and teachers. This book includes helpful family and friends. information that can help any student with organizational skills, transitioning, My Mouth is a Volcano! sensory sensitivity, motor skills and (Teacher’s Guide) awkwardness, managing stress, bullying, (BMYM02 Price: socializing and friendships, dating and $9.95) By Julia Cook relationships, obsessions, and creativity.

An activity book that goes along with My Mouth Is a Volcano, this book includes discussion questions and exercises, activities, ideas, and handouts that help children learn to stop interrupting and to respect others by listening and waiting for their turn to speak.

10 www.autismsociety-nc.org www.autismsociety-nc.org The Social Success situation is bullying or a misunderstanding Workbook for Teens: between peers. Strategies for peers Skill-Building that witness bullying and information Activities for Teens that teachers can use to help foster an with Nonverbal accepting learning environment are Learning Disorder, included. Asperger’s Disorder & Other Social-Skill The Bookstore has also added several Problems (BSOC13 Price: $14.95) By new items that address an area that has Barbara Cooper MPS, Nancy Widdows often been overlooked: girls on the autism MS spectrum.

This workbook contains 40 activities that Books were created especially for teens. The Aspergirls (BASP33 Price: $18.95) By activities help teens recognize and use Rudy Simone their strengths to overcome social skill challenges. It teaches teens how to read Girls Growing Up on the Spectrum social cues, understand emotions, help (BGIR01 Price: $19.95) By Shana Nichols them avoid meltdowns, and much more. with Gina Marie Moravcik and Samara Pulver Tetenbaum Wrightslaw: All About IEPs (BWRI04 Price: Asperger’s and Girls (BASP27 Price: $12.95) By Barbara $19.95) By Dr. Tony Attwood, Dr. Temple Cooper MPS, Nancy Grandin, Catherine Faherty, Shelia Widdows MS. Wagner, Mary Wrobel, Teresa Bolick, Lisa Iland, Jennifer McIlwee Myers, and This is an informative Ruth Snyder book that offers clear, concise answers to over 200 frequently DVD asked questions about IEPs. It includes Asperger’s, Autism & Girls (DASP10 information on what the law says about Price: $24.98) Dr. Tony Atwood IEP Teams and IEP Meetings, your rights as a parent, the steps you need to know when developing the IEP, placement and transition, and strategies on how to The Autism Society of North resolve disagreements. Carolina Bookstore is located on the first floor (Suite 101) of No Fishing Allowed: 505 Oberlin Road in Raleigh, Teacher (BNOF02 Price: North Carolina. Please note that $14.95) and Student bookstore staff travel to local (BNOF01 and out-of-state-events. In order Price: $6.95) Manual to ensure that a bookstore staff and DVD (DNOF01 member is available to help Price: $69.95) (all sold you, please call to schedule an separately) By Carol appointment. Gray and Judy Williams Please contact us at: This manual and DVD Dawn Eberwein, set provides an all- Bookstore Sales Specialist inclusive program for (919) 865-5087 working with kids on the spectrum who are dealing We also encourage you to with bullying. Strategies browse for books at the Autism for teachers and students Society of North Carolina are presented on how to Bookstore website: distinguish whether a www.autismbookstore.com

www.autismsociety-nc.org www.autismsociety-nc.org 11 Materials to get Started Creating an The first thing you’ll need is a 3 ring binder or an accordion file. I use a binder that has a plastic sleeve in the front where IEP Notebook I place a picture of my child, which is a by Amy Perry good reminder of who I’m doing all of this for! If you use a 3 ring binder, you will want to have a 3 hole punch or plastic Managing the needs of our children with sleeves that you can slide your paperwork autism can be a full time job. Add to that into. One advantage to using plastic the mountain of paperwork that comes sleeves is you avoid punching holes into from doctors, evaluations, schoolwork, documents that may not have margins and IEPs, and you can quickly find wide enough to accommodate them. Be yourself overwhelmed. sure to have dividers that are easy to label so that you can organize your notebook Summer can be a good time to turn that into as many sections as you need. mountain back into a molehill and prepare for the next school year by condensing Next, you’ll need to gather up all of all of your essential papers into a well your child’s paperwork. What kind of organized notebook. Having a notebook paperwork should go into your notebook? with all of your child’s essential records and documentation can be a huge help Here are a few suggestions: when you sit down for your annual IEP • Your child’s IEP or 504 Plan, meeting. Whether you’ve just finished • Medical/Psychological evaluations and your IEP meeting, or are anticipating one Testing, with the start of the next school year, this • Diagnostic reports, is a great time to make sure you have the • Academic evaluations (by the school papers you’ll need at your fingertips. and/or independent evaluators), • Recent report cards and progress reports, Why should you have an IEP notebook? • BIP (Behavior Intervention Plan) and Before digging in, it’s good to know why Discipline Records, having a notebook like this can be so • Written correspondence with teachers or important. Aside from the convenience of school administrators, having important papers all in one place, • Communication log documenting why should you keep a notebook – doesn’t conversations with teachers or school the school keep track of all of your child’s administrators, paperwork for you? The answer is yes • Contact information for important – and no. The school does keep a file professionals, such as doctors, private on your child, but this is merely a record speech therapists, etc., from the school’s point of view. • Samples of your child’s work, showing strengths and weaknesses, including As the parent, you are the most classwork, homework, and tests, and knowledgeable person about your • Standardized test results. child, and creating your own file can be instrumental in advocating for your child. A Few Tips on Documentation I have seen firsthand how IEP teams Always keep the original document in respond to parents who arrive at meetings your notebook. If you want to keep extra with organized documentation that they copies, create a box or filing system – this are able to access quickly. The notebook helps keep your notebook from filling up is a very powerful tool in reviewing your too quickly. child’s history, recording what other professionals have said about your child, Dates are important! Every piece of paper and keeping an accurate record of what should have the date that you received the school has committed to and what it – marking this in pencil is fine. It is they have actually done. Written evidence important to note the following dates: about your child speaks for itself, removing you from the middle.

12 www.autismsociety-nc.org www.autismsociety-nc.org • Meetings with anyone at the school, to easily locate the contents. When you • When you send or receive key add a document to the notebook, you documents, simply add it to the master list, which • When you tell the school specific functions as your table of contents. One information such as, “my child is benefit of the chronological method is that spending hours on what should be a 15 as you acquire papers, you simply add minute assignment,” and them to the notebook and the master list, • Anytime your child is disciplined or without worrying about categorizing. suspended. There is no right or wrong method to If it is in your notebook, it needs to have organizing the information. What matters a date on it. This is very important when is that it makes sense to you and that you you need to establish a time line. are able to access what you need quickly.

Putting it all Together You may want to keep your IEP binder in There are two schools of thought in a tote bag where you also include supplies organizing all of this information: like pencils, pens, highlighters, and an IEP guide book. When you arrive at your next • One method is to create categories such IEP meeting, you will now have all of the as Evaluations, Correspondence, IEP, tools you need to advocate for your child, Work Samples, etc. You can buy a kit with as well as a renewed sense of confidence a notebook, dividers, and tips to help you that you are organized, knowledgeable, put it all together at www.organized4kids. and prepared. com. • The other method, which is Amy Perry is a Parent Advocate in the recommended by www.WrightsLaw.com, Fayetteville area. She can be reached at is chronological. You create a master list [email protected]. of documents at the front of the notebook

Save the Date! Annual Conference March 30-31, 2012

On March 30, the ASNC Annual Conference will return to the Hilton University Place in Charlotte. Friday will feature keynote speaker Michelle Garcia-Winner, who specializes in the treatment of individuals with social-cognitive deficits such as High Functioning Autism and Asperger’s Syndrome. Saturday programing is being finalized.

The conference, which is the largest autism gathering in North Carolina, will also offer programs on Personal and Family Perspectives, an autism vendor showcase, parent and professional networking opportunities, and continuing education credits.

Online registration opens August 31. For more information,visit www.autismsociety-nc.org.

Make plans to join us March 30-31!

www.autismsociety-nc.org www.autismsociety-nc.org 13 Other programs impacting children NC General took deep cuts: Schools were cut by 408 million; early childhood education and Assembly development were cut by more than $55 million. Additionally, evidence backed Legislative Session programs like Smart Start will no longer be able to promote health screenings Wrap-up that help with early identification of by Jennifer Mahan children at risk for development problems. ASNC pushed for legislators to take a balanced approach and keep current Families, self-advocates and ASNC faced revenue streams in place to support these difficult challenges in advocating for needed programs. Despite public support, better services and supports for people on legislators allowed the penny sales tax to the autism spectrum as we headed into the sunset on June 30th. long North Carolina General Assembly legislative session in January: ongoing Managed Care Waivers: ASNC has made tough economic times with a 2.2 billion it a priority to advocate for I/DD system dollar state budget deficit, new legislators management options other than 1915 unfamiliar with our needs, pressure from b/c managed care waivers for people interest groups opposed with Autism Spectrum to policy changes, and Disorder. Of greatest a determination across concern under managed state government to care is the elimination use managed care of independent case for services to those management which with developmental creates a conflict of disabilities. ASNC pushed interest in managing policymakers to think the use of services about the effects their (i.e. the cost of care) decisions would have and determining an today and in the future. While we did not individual’s needs and plan of care. As the achieve all we set out to do, we were able session progressed, it became clear that to have some significant impacts. policymakers were determined to push managed care across the entire system. Budget: At the beginning of the year, ASNC pushed for additional consumer policymakers were expecting to make protections and for the voice of families, large cuts to all programs, including those self advocates and local communities that serve developmental disabilities. to be heard in the process. Please see By the end, suggested cuts had been page 16 for expanded information about significantly reduced. Most cuts to the new managed care waivers in North Medicaid we hope will come from Carolina. efficiencies, connecting people to primary care services and better management Autism Insurance Coverage: Autism tools. Cuts to state service funds were insurance bill sponsors introduced very reduced to a $20 million onetime cut from good bills this year, Senate Bill 115 and a recurring $30 million cut. Cuts to non- House Bill 826, Coverage for Treatment profit programs went from $ 10 million of Autism Disorders. This bill ensure that down to $ 5 million. Still, there will be North Carolina health plans cover services significant impact; service providers have for ASD, so it’s disappointing that autism taken rate cuts for the last three years, insurance legislation has not moved despite needing to meet increasing quality forward in the NC General Assembly standards and rising costs. Any reductions this session. We all know it’s the right in a system that already struggles with thing to do, so that those with autism waiting lists will likely come at the cost get the services they need to be healthy of people losing access to needed services and successful. We also know that it will and supports. save money in the long run by promoting independence.

14 www.autismsociety-nc.org www.autismsociety-nc.org Unfortunately, to get it passed, we need families are surprised to learn that 39 to convince NC General Assembly counties in North Carolina still allow lawmakers to raise insurance standards physical punishment and that 17 are in both private and public health plans, actively using it (Numbers are correct which is estimated to increase costs less as of this printing. Counties are moving than 1%. At this time, many lawmakers to ban the practice and this number are against taking actions which would may drop as we get closer to the school result in higher costs to business or year start.) ASNC continues to promote state health plans. This is not the only positive behavioral supports and an end reason that autism insurance bills have of the use of physical punishment for all not passed, but it is a huge factor. Other children in schools. Previously, corporal factors include a lack of understanding punishment had been banned for students about Autism Spectrum Disorder and its with disabilities; however, we know treatments, as well as opposition from from parents that students with as yet powerful interests like the insurance unidentified disabilities continue to be industry and business associations. subject to corporal punishment.

The bill is still alive and will carry over to Your Advocacy: One of the best outcomes the short Legislative session in May-June of this legislative session is that we of 2012. Between now and then, families, heard that Legislators heard from you. self-advocates, autism professionals, and On managed care, on the budget, on other advocacy organizations must meet education, on insurance – they got your with their NC state General Assembly calls, letters and emails. Having real Legislators, especially those on the House life examples of how Autism Spectrum Health and Human Services Committee, Disorder is impacting you and your family the House Insurance Committee, and does make a difference in public policy. the Senate Insurance Committee, to urge ASNC needs that advocacy to continue to those lawmakers to pass the bill. build so that every Legislator hears from families, self-advocates, and others in Tax Credits and Corporal Punishment: their districts. Autism advocates had two solid victories this past session: House Bill 344, Tax Victories on autism insurance, funding for Credits for Children with Disabilities, services, ending waiting lists, and creating and Senate Bill 498, Modify Law Re: lifetime supports will be won with your Corporal Punishment. House Bill 344 action. Policymakers were moved by your Tax Credits for Children with Disabilities stories about struggling to find the right gives a $6,000 tax credit to families education options to ensure your child’s whose child with a disability moves from success. That same action is needed in a public school to attend a private school the coming year to pass better insurance or home school. To qualify for the credit, standards. ASNC challenges you not only children must have been in a public school to get involved, but to ask others who the previous two semesters, have an know you to join in this effort. Sign up for IEP, and be receiving special education our e-updates, write letters, and pass them or related services on a daily basis. The along to your neighbors with the request legislation also establishes a special needs that they do the same. trust fund to be administered by the NC Department of Education to supplement Please contact Jennifer Mahan, Director funding for special education services of Government Relations, with questions in the public schools. Part of the savings or concerns. She can be reached at 919- generated by the use of the tax credit will 865-5068, 1-800-442-2762, ext. 1116 or go to the trust. [email protected].

Senate Bill 498, Modify Law Re: Corporal Punishment, requires schools to send a form at the beginning of the school year allowing parents to opt-out of corporal punishment for their children. Many www.autismsociety-nc.org www.autismsociety-nc.org 15 1915 b/c Waivers and addictive disease. It may work less well Autism: What Does for people on the autism spectrum and with other developmental disabilities Managed Care Mean to who do not “recover,” who have Me or my Child? lifelong conditions and need habilitative services that build and maintain skills Over the next two years, managed for maximum independence. ASNC care waivers, also called 1915 (b)/(c) hopes it means that people get what they combination waivers, will fundamentally need to live their lives, and savings are change the way all services for intellectual focused on providing consistent services and developmental disabilities, mental and supports, early intervention, and health, and addictive disease/substance eliminating waiting lists. abuse (I/DD, MH, SA) are managed and delivered in North Carolina. If you get It’s moving FAST. Two bills passed the any state or federally funded services for legislature this past session that expand Autism Spectrum Disorders, including managed care from one region, Piedmont those funded under CAP-MR/DD, Behavioral Health (PBH), to every LME Medicaid, state funds (IPRS dollars), and across the entire state in two years. House other funding, this will impact you. Bill 916 expands waivers statewide and Senate Bill 316 allows PBH to expand Managed care waivers are a BIG their waiver to more counties. change. Under managed care, the Local Management Entity (or LME or H 916 does some good. The “aggregate sometimes still called funding” in the bill the Area Program or allows the LME Mental Health Center) under the waiver to will get a per-member take unused funds per-month fee to serve and use them to serve people with I/DD, MH more people and/ and SA needs in their coverage area. Right or provide more services and supports to now, NC has a fee for service system: the people being served. There is continuity person gets the service and the provider of care language that shows concern bills the LME or Medicaid for those for making sure people who are getting service hours. services continue to get what they need, though the bill makes no guarantees. LMEs will manage all public resources There is intent to use 15% of savings in to serve MH/DD/SA including Medicaid, future years to serve more people with Health Choice, state funds/IPRS, federal I/DD, though the current General block grants, and others. This has the Assembly cannot legally obligate a future potential to impact all publicly funded General Assembly to do so. There is a supports, services, and beds in their request to study the feasibility of an “i” region, including state facilities like MR option under Medicaid to provide supports Centers and hospitals, Intermediate Care to people with I/DD who do not qualify Facilities for people with I/DD (ICFMR), for an ICFMR level of care, but it stops Community Alternatives Programs for short of committing to make it happen. I/DD (CAP MR/DD) services, residential ASNC will continue to advocate to make programs, crisis services, developmental these options reality. therapies, respite, etc. It includes people who are now served, who are on waiting H 916 eliminates Targeted Case lists, or who could be served in the future. Management for people with I/DD. House Bill 916 models all future waivers Managed care waivers save money by on PBH, which has the LME managing promoting “wellness” to avoid future service funds/utilization management costs and expensive care like hospitals. (i.e. cost controls), eligibility, assessment, This is based on a medical model of development of person centered plans, care that has been shown to work well and care coordination. H 916 allows for people with mental illness and an LME waiver site to contract with

16 www.autismsociety-nc.org www.autismsociety-nc.org an outside agency for “treatment plan situation. (This does not affect people who development” and for the “community have a friend or relative who is assigned guide” service which ASNC believes will guardianship.) allow for some independent development of person centered plans and offers ASNC urges you to pay close attention assistance to consumers and families. to your local communities’ waiver plan Care Coordination and Community Guide development. Every LME has customer which is offered under the waiver is relations staff and should be soliciting different than Targeted Case Management. input from the public as they make these In addition, the LME controls which changes. Many things about the impact of providers it contracts with, and for what waivers are unknown. The Autism Society services, in its closed network. of North Carolina will continue to provide you with information on the new waivers H 916 does not fix guardianship problems as we learn more, will work at the state under the waiver. Due to a court decision and local level to monitor implementation, that says that the waiver LME cannot be and will recommend solutions to any an individual’s guardian, its unclear if the problems that arise. waiver LME can contract with an outside organization to provide guardianship Please contact Jennifer Mahan, Director services. Unless this is fixed, already over- of Government Relations, with questions burdened local Departments of Social or concerns. She can be reached at 919- Services would need to assume corporate 865-5068, 1-800-442-2762, ext. 1116 or guardianship of individuals. Disability [email protected]. advocates are pushing for a fix to this Volunteer Spotlight Dwight Meredith is a dedicated father of a teenager with Autism Spectrum Disorder. When the Meredith family first connected with ASNC through the Guilford County Chapter and Triad Services office, Dwight and his family immediately got involved.

Dwight often reaches out to support parents in the Greensboro area and is actively involved with the Chapter. He willingly shares his family’s story and his unique perspective about the challenges of living with autism in order to expand support of ASNC.

When ASNC’s Triad Services office needed to expand office space, Dwight and his wife played an integral part in researching locations that would meet the needs of all the programs. After finding a site, Dwight was instrumental in securing the new property. Today, the Triad programs are thriving in their new space.

Chris Liga, Triad Regional Services Director, says, “Dwight is a global advocate. Not only is he concerned about the needs and welfare of his son and of ASNC, but also of all individuals with ASD throughout Guilford County. He has educated himself to be a good teacher to his son as well as a support and guide to others.”

The Autism Society of North Carolina would like to thank Dwight Meredith for his time and talents as we work together to better the lives of North Carolinians with autism. Thank you, Dwight!

Photo- Dwight with his son, Bobby. www.autismsociety-nc.org www.autismsociety-nc.org 17 participants, Chapters Update and to feel the gratitude For many, ASNC Chapters are a constant of family lifeline. Although each Chapter is unique, members they all extend the work of ASNC who truly by providing personal support and a appreciated comforting community for those affected their by autism. Here are highlights of the work efforts. The event was such done by four of our amazing Chapters. a success that the chapter will make it an annual event. This year it will be held on Outer Banks Chapter Saturday, August 13th. The location of the Outer Banks Chapter in Eastern North Carolina provided a Buncombe County Chapter unique opportunity for families in that Becky Demmer, a parent in Buncombe area. Last August, the Outer Banks County, shared how the Buncombe Chapter held its first “Surfing for Autism” County Chapter provided her family with event in Nags Head. Chapter President, a caring, trustworthy network soon after Eileen Lowry, and local surfer, Mark they moved here from Florida. When Slagle, used their personal knowledge she first contacted ASNC, Mrs. Demmer of autism to craft an excellent program. found a friendly, helpful parent advocate Each participant was paired with 2 in Theresa Johnston, whose advice experienced surfers and a skilled worker prepared them for life in the Asheville who was knowledgeable about autism. area. Theresa also immediately connected Activities including an obstacle course, a them with other families in the community sensory tent, and a water play feature were by inviting them to the upcoming available on the beach for those waiting to Buncombe County Chapter Christmas surf and for post-surf relaxation. party.

“It was so much fun, and we met so many nice people, that we began attending regular meetings, too. We felt right at home there,” said Mrs. Demmer. “Through ASNC, I have met many friends, found new resources, learned as much as I could about autism by attending the workshops, and gained peace of mind. “As the event approached, we all expected They have been a real lifesaver for our a great day in the sun and surf, but it family.” turned out to be much more than that,” said Lowry. “Family members, caregivers, Mecklenburg County Chapter and interested onlookers cheered and Providing help when families need it offered support from the beachside.” was the mission of Lois Stickell, board member of the Mecklenburg County Along with being a moving experience Chapter. Her sons were in the midst for families, the event touched everyone of transitioning from high school to involved. Teachers, therapists, and adulthood. There was a lot of information caregivers were elated to see the children in the Charlotte area, but it was not succeed in a new environment. Surfers necessarily specific to autism or situations got to know children with different like hers, so Mrs. Stickell created an abilities, to informational packet for families with experience young adults with autism in transition. the In addition, she worked with ASNC positive Bookstore staff to order a workbook effects designed to help prepare families for life they had after high school. on the

18 www.autismsociety-nc.org www.autismsociety-nc.org Doris Byrd, a self- contained autism and school staff working as a team. teacher, said, “The packet of transition They recently invited their Exceptional materials that you sent to the graduating Childrens’ Director and his staff to a panel seniors and those leaving school at discussion of their roles in the educational Waddell High School was so timely system. Parents and family members were and needed.” She enthused about the encouraged to ask questions. Despite practical application of the packet past frustrations, parents were able to contents, including information about gain new insight about the schools and future training resources and avenues to become aware of services and solutions receiving guidance for specific jobs. A available to them and their children. booklet in the packet gives insight into The panel made note of several parent what graduating seniors can expect in ideas and made plans to share additional adulthood and the skills needed to be information and resources. successful. According to ASNC Parent Advocate Mrs. Byrd went on to say, “In my opinion, Amy Perry, “It’s not a secret that parents it was one of the most valuable ‘gifts’ that and schools do not always see eye to these students will receive. We appreciate eye. But at this meeting, I saw parents the Autism Society of North Carolina for with smiles of relief and appreciative all the information and aid they provide understanding; I saw professionals seeing for the students, parents, and teachers in a parent’s perspective in a new light.” the schools.” To find a Chapter, Support Group, or Moore County Chapter Affiliate in your area, please visit our The Moore County Chapter is another website at www.autismsociety-nc.org or Chapter that works to keep families call 1-800-442-2762.

6th Annual WNC Run/Walk for Autism 5K • 1K • Kids’ Dash Saturday, September 24, 2011 UNC-Asheville 9:00am

www.wncrunwalkforautism.com Run • Walk • Form/Join a Team • Donate • Volunteer

www.autismsociety-nc.org www.autismsociety-nc.org 19 tenga sobre su hijo. Escriba las respuestas, Bilingual Connections: sugerencias y planes hechos durante la Preparándose para citas con cita. Esto le ayudará a documentar lo que escuelas, doctores y otros se ha intentado. profesionales 7. Para las primeras citas, traiga Para muchos padres de niños con autismo, información por escrito sobre autismo las citas con la escuela, doctor u otros y otras condiciones de su hijo(a), profesionales pueden ser estresantes y evaluaciones, planes escolares, e abrumadoras. información de contacto para su doctor y otros profesionales. ¿Cómo puede estar mejor preparado? Aquí están algunas ideas para que usted 8. Prepare a su hijo(a) para la cita, incluya pueda aprovechar más de estas citas. la cita en su horario diario. Usted puede usar historias sociales sobre esta cita y 1. Mantenga un cuaderno de información fotografías de la escuela u hospital. Usted de contacto para todos los profesionales, podrá también considerar traer a su hijo(a) organizaciones y centros que están a la escuela o a la oficina médica antes de relacionados con su hijo(a) y su autismo. la cita para que se pueda familiarizar con Incluyendo el nombre del interprete de la el área. entidad o alianza hispana. Las escuelas públicas, centros de salud comunitarios 9. Si su hijo tiene problemas esperando y entidades locales mentales tienen largos periodos, tiene problemas intérpretes para sensoriales a luz familias que no hablan o ruido, u otros inglés. problemas de comportamiento, 2. Si usted no habla contacte a la oficina inglés o usted no antes de la cita y tiene alguien que pregunte si hay un le pueda traducir cuarto separado en el los comunicados que usted y su hijo por escrito, escriba puedan esperar. entonces una carta en español al maestro o doctor sobre cualquier pregunta. 10. Traiga juguetes sensoriales, alimentos, libros y otros artículos para ayudar a que 3. Guarde los documentos escolares en un su hijo se mantenga calmado y cómodo. folder especial. Este folder o cuadernillo deberá incluir el IEP (Plan de educación La sociedad del Autismo en Carolina Individualizada por sus siglas en inglés) del Norte ofrece talleres alrededor del de su hijo(a), asesorías, reportes de estado para padres y profesionales, progreso, cartas de la escuela, etc. incluyendo “The Autism Spectrum IEP,” (Autismo IEP), “Taking Autism 4. Por separado documente la información to the Doctor/Dentist,” (Llevando el médica de su hijo(a), incluyendo autismo al doctor/dentista), “Navigating evaluaciones, tratamientos, terapias, Services” (Servicios de navegación) y nombres del doctores y especialistas, lista más. Para mayor información sobre estos de medicamentos, historial médico, etc. entrenamientos por favor contacte a su consejero local. 5. Es importante que usted archive toda correspondencia sobre los beneficios de Para información en español, por favor su hijo(a) de servicios sociales, seguridad llame a Mariela Maldonado, Enlace de social, departamento de salud mental, su asuntos hispanos, en (919) 865-5066 ó proveedor de seguros médicos, etc. [email protected].

6. Haga una lista de puntos que le gustaría discutir y preguntas y comentarios que

20 www.autismsociety-nc.org www.autismsociety-nc.org Bilingual Connections: Preparing for Appointments with Schools, Doctors, and Other Professionals For many parents of children with autism, appointments with the school, doctor, or other professionals can be stressful and overwhelming.

How can you be best prepared? Here are 7. For first time appointments, bring some ideas for you to make the most of written information about autism and these appointments. your child’s other conditions, evaluations, school plans, and contact information 1. Keep a notebook of contact information for your child’s doctors and other for all professionals, organizations, and professionals. centers that are related to your child and their autism. Include the name of the 8. Prepare your child for the appointment. entity’s interpreter or Hispanic liaison. Include the appointment in his daily Public schools, community health schedule. Your may use social stories centers, and Local Mental Entities have about this appointment and pictures of the interpreters for non-English speaking school or hospital. You may also consider families. bringing your child to the school or doctor’s office prior to the appointment so 2. If you do not speak English or you that he can become familiar with the area. do not have someone who can translate written communication in English, then 9. If your child has trouble waiting for write a letter in Spanish to the teacher or long periods, has sensory issues to light or doctor about any concerns. noise, or other behavioral issues, contact the office prior to the appointment and ask 3. Archive school documents in a special if there is a separate room that you and folder. This folder or notebook should your child can wait in. include your child’s IEP (Individual Education Plan), assessments, progress 10. Bring sensory toys, snacks, books, and reports, letters to the school, etc. other items to help your child stay calm and comfortable. 4. Separately archive your child’s medical information, including evaluations, The Autism Society of North Carolina treatments, therapies, names of doctors offers workshops across the state for and specialists, list of medications, parents and professionals, including medical history, etc. “The Autism Spectrum IEP,” “Taking Autism to the Doctor/Dentist,” 5. It is important that you file all “Navigating Services” and more. For correspondence about your child’s benefits more information about these trainings, from Social Services, Social Security, please contact your local Parent Advocate. the Department of Mental Health, your insurance provider, etc. For information in Spanish, please call Mariela Maldonado, Hispanic 6. Make a list of points that you want to Affairs Liaison, at (919) 865-5066 or discuss and questions and concerns that [email protected]. you have about your child. Write down the answers, suggestions, and plans made during the appointment. This will help you keep track of what has been tried.

www.autismsociety-nc.org www.autismsociety-nc.org 21 Mini-Camp Weekends Provide a Slice of Summer Camp, Year-Round

Larry and Rita, parents of Alec, age 14, share how Mini-Camp Weekends at Camp Royall have impacted their family:

Alec first attended Camp Royall during the summer of 2010. We had selected day camp for him because Alec is adopted and was abandoned as a toddler at an orphanage. He had a tremendous fear of staying far from either of us. He worried we wouldn’t come back and he would be left again.

The first day of summer camp at Camp Royall, Alec was scared and didn’t want to go. But by the end of the second day, he was asking if and when he could stay overnight because he felt so safe with everyone there.

Respite (or Mini-Camp) weekends gave us a chance to test just how well Alec would do in an overnight situation. After we moved him into his cabin, he was waving and saying, “Bye, Mom and Dad, see you later.” Not a trace of fear --- and it’s been that way for each respite weekend he’s attended. If anything, he’s wanted us to leave faster and faster each time so that he can get to “the good stuff!”

As parents of a special needs child, respite weekends give us a chance to reconnect with one another and relax knowing that our son is in the hands of those who truly understand him and his needs.

When we asked Alec what he would tell other kids about Camp Royall, he said, “It’s very calm and peaceful. I like to swim and run there. The zip line is cool to fly on. I love the counselors. They are very friendly. I love the friends I meet there.”

Upcoming Min-Camp Weekends are September 16-18 and November 4-6. Make plans to join us! For more information, visit www.camproyall.com.

Greensboro Run/Walk for Autism 5K Saturday, September 17, 2011 UNC-Greensboro 9:00 am www.greensbororunwalkforautism.com

22 www.autismsociety-nc.org www.autismsociety-nc.org Summer Camp

Another awesome Summer Camp season • We are constantly working to improve is wrapping up. our summer camp program. This summer, we have been thrilled to offer therapeutic “We want each camper to have fun and horseback riding. Each Tuesday, horses feel that they are the center of the universe arrive from Heads Up Therapeutic for the week that they are with us,” says Horseback Riding Center to give each Sara Gage, Program Director for Camp camper the opportunity to ride. Royall. “At camp, our goal is to create an environment that “We have seen a is supportive and lot of triumphs this welcoming to all summer with nearly people with autism, all of the campers regardless of their getting on the communication or horses and loving behavioral skills, it,” says Lesley or their need for Fraser, Assistant supervision.” Program Director. “This is another Some of the things that exciting way for make Camp Royall’s our campers Summer Camp program to grow in special are: confidence and breadth of • Counselors receive experience.” extensive training and are equipped to Additional handle all levels of highlights from functionality and camp include: various requirements for structure and • The Knightly support. Every Order of the Fiat activity that we Liux presented provide is designed a series of with our campers’ demonstrations needs in mind, and for our campers, each counselor is including putting capable of modifying on armor and sword activities to meet fighting. What a treat their camper’s for our campers and individual interests staff! and needs. • The Skipsations Jump Roping Team • Each week, camp is tailored to different from Chapel Hill performed for our age groups to maximize the offerings of campers in mid-July. The Skipsations have age-appropriate activities. Some weeks been coming to camp for years, and our are offered exclusively for the high campers always enjoy their entertaining functioning population within those performance. age groups. (High functioning campers are able to manage self-care skills For more information about Camp Royall, independently, communicate verbally, visit www.camproyall.com or contact handle large group activities with less Sara Gage at 919-542-1033, ext. 102, or intensive supervision, and follow written [email protected]. schedules.) www.autismsociety-nc.org www.autismsociety-nc.org 23 age, interests, and behaviors of the other Understanding participants? Residential Placement by Judy Smithmyer 7. What type of “day supports” will be provided and will it be specific to Having a plan for your child’s future your child? Do they have their own day is a necessity in today’s uncertain program, or does the individual need to environment. The importance of planning get a job during daytime hours? early cannot be overstated. 8. Is transportation provided to doctor’s Connecting with your Local Management appointments, meetings, or your child’s Entity (LME) to ask a case manager to job site? Is there access to public assist you in this process is the first and transportation? most important step. Once you make that contact, you will be connected with case 9. What kind of oversight is there? Who management services. There you will monitors the home/agency? What is be given information regarding funding the complaint process? Ask to see it in sources or placed on a waiting list for writing. services. Either way, the LME needs to know what your child’s needs are. 10. Ask for a reference from a family member who has a loved one residing After this step, here are a few tips for with the agency. parents when interviewing potential providers. Other considerations include: • Safety. Consider the location of the 1. What type of residential support is home and supervision of the residents. best for my child? Your case manager • Quality of Life. Will your loved one be can assist you with this process. Options doing things that are meaningful to them? include: Alternative Family Living (AFL), Will they be challenged to grow and an assisted living/apartment type setting, become as independent as possible? a group setting, and the most intensive • Distance from family. level of support in an Intermediate • How much family involvement will the Care Facility for the Mentally Retarded agency allow? or Developmentally Disabled (ICF- • Visitation/family leave policy. MR/DD). The type of setting that is appropriate for your child depends on the Once placement is secured, the family level of support that is required. should initiate monthly team meetings. This gives the caregiver team the ability 2. Take a road trip. Visit potential to discuss concerns and keep the family providers to get an idea of what different informed about the individual’s progress. residential supports look like. Visit It’s also a great way to be proactive in several different options, even if they resolving issues as they arise. don’t have a current opening. Take someone with you who can be objective. Remember ASNC Parent Advocates are available to help you if you feel you 3. How long has the agency been in need assistance/advocacy to resolve a business? Look for financial stability. residential complaint. This can be a very sensitive issue for families and is not 4. Will your loved one have access an easy decision to make. Sometimes to community services? Is the local just having someone accompany you community supportive? to a meeting and help you ask difficult questions can make all of the difference. 5. Do staff members have ongoing training about autism and behavioral Judy is a Parent Advocate in the challenges? Greensboro office. She can be reached at (336) 333-0197, ext. 1402, or 6. Ask about the other individuals in the [email protected]. home. Is there compatibility in regards to

24 www.autismsociety-nc.org www.autismsociety-nc.org All donations received by ASNC stay in North Carolina to provide advocacy, training and education, and direct services to the nearly 60,000 people in our state with Autism Spectrum Disorder. We are pleased that 87% of the money donated to ASNC goes to direct program support. Your donation makes a difference everyday to a person in our state with autism. Thank you for your tremendous support!

To be good stewards of our funds, we are limiting the donation list to Honorarium/Memorial gifts only. Look for a complete list of donors in our 2011 Annual Report in early spring 2012. The following list reflects Honorarium and Memorial donations from January 1, 2011 to June 30, 2011. All efforts have been made for accuracy; however, to report an omission or for any questions, please contact Beverly Gill, Donations Coordinator, at (800) 442-2762, (919) 865-5056, or [email protected].

HONORARIUMS Barbara and Gary Sharp Chase Gordon Marianne and Leonard Thiesen Donna and Wyatt Gordon Jaime Alvarez Martha Thiesen Ian Gourley Jean Alvarez Soonjung, Joey, Markus and Katrina Jaclyn and Tony Gourley Jeffrey Apple Thiesen Temple Grandin Patricia J. Apple David A. Christofel III Husam Demir Austin Arahill Miriam B. Creech Ashley Grayson James J. Arahill Jayme Clark William Stayduhar Paden Atkinson Stacey Horowitz Shannon Grimes Mr. and Mrs. Tommy Foster Charlene J. Jones Linda Gail P. Walker Chase Michael Barry Alyssa Coleman Mr. and Mrs. Ralph Harwood Catherine and James Hilton Sylvia E. Dixon Beverly Thomas and Jesse McDaniel Paul Barth Beck Collier Caryl Herrick’s Mother Suzanna L. Cary Benchmark Seat, LLC Burke County Public School/Burke Rev. Jeff Bartolet Lisa and Troy Jordan Counselors Association Betty L. Ingool Adaire and Weems Pennington Hosts of ER and Wes’ Janet Beaman Lisa N. Roberts Engagement Party Herber, Gina, Taylor and Bays Lynn and Craig Smith Clarence J. Seaton Windley Holmes B. Smoot Zachary Houghton Elsa Berndt Sidney Collins Elizabeth and David Traini Elsa G. Debeer Marlene K. Diorio Paul Hoyt Tyler D. Billings A.J. Cottrell Gale and Greg Hoyt Crystal Billings Jane H. Tyndall Lydia Hutto Harrison Bischof Kathy Dolbee Paula Munos Joan and Michael W. Bischler Fontana Regional Library Ava and Kim Johnson Connie M. Daniel Gus Donner Bank of America Cynthia and David Dibble Lyda and Rich Mihalyi Jimmy Joy Stephanie P. Karriker Liam Reese Freeman Barbara and Robert Campbell Gary J. Kirkegaard Tammie and James Crawford Andrew Julian Thomas R. Maner Mr. and Mrs. Jonathan R. Freeman Mildred and Henry Julian Kaitlin Breckinridge Max Gearhart Chris Kalinowski Paula Munos The Presbyterian Women of The Kathleen Kalinowski Christian Caldwell Little Chapel on the Boardwalk Kyle Kern Frances P. Burke Shirlee Gearhart Consuelo and James Kern Joy Sunday School Class The Presbyterian Women of The Little Chapel on the Boardwalk www.autismsociety-nc.org www.autismsociety-nc.org 25 Toby Keusink Casiano D. Roldan Freddie and Ronald Schrimper JoAnn and Charles Moore Fidelia and Dave Fernandez Jane and William Weirich William King Roman Kay and Randy Wicker Pat and Al Flowers Melodee Jackson Trevor James Bush Marianna and Michael Calhoun David Sasser Deborah Ambrose Jacob Kowalski Jean and Henry Sasser Kurt Arehart Michael A. Kowalski Ryan Schaffroth Scott Bierly Mr. and Mrs. Gordon Leden Julie Schaffroth Eurry and Richard Boris Ada and John Offerdahl Mr. and Mrs. Rorie Short Chad Burrell Mr. and Mrs. Leichte William N. Rice Kristin Carbin Hien Nguyen Raven Simpson Rebecca Carie Chris Liga Patrick D. Simpson Lisa Cichy Joe B. McCollum Jr. Matthew Smith Tracey Colores Joan A. Logan Barbara and Crawford Smith Norita Davis Susan and Ivan Popkin Ryan Smith Melissa Eadie Miriam A. Schneirov Barbara and Crawford Smith Alison Flaig Joie Lubber and Cody Gray Stanback Susan Goldhaber Shipman Susan and Ivan Popkin Linda and Leonard Hamilton Jonnie Denning Miriam A. Schneirov Dawn Henshaw Elizabeth Migliaccio Cameron Sutton Lauri and Alan Hilyer Maria Sadler Betty S. Hovis Teresa Howell Elaine and Kilby Strickland Rey Taylor Paul Imura Harrison Machikas Bethie Taylor Victoria and Michael Jacob Harry Densel Teachers of Joshua Bolick Carol Kendricks Jonathan McCrann Jennifer and David Bolick Paul Krupa Kelly and Mike McCrann Teachers of Megan Bolick Leesville Road High School Varsity Liam McFarland Jennifer and David Bolick Cheerleaders Susan and J.R. McFarland Mildred and Dillard Teer Diana Lockamy Brayden McPeters Lyda and Rich Mihalyi Daniel Mamo Chasity McPeters Joshua O. Torres Thomas Martin Mecklenburg County CDSA Laura Torres Nancy and Mark Mosley Danielle D. Talford Aubrey Turner Georgette Nicholas Suzanne Meehan Erin M. St. Pierre Margaret and William Nolan Joe B. McCollum Jr. Kay Walker Marcia Nunn Deborah and Dwight Meredith Sallie and Harry Walker Barbara Parker Margaret A. Franklin Brayden West The PICU Physicians Eric Mihalyi Catherine and James Hilton Larry Rosenberg Kristin E. Teer Joshua White Beata and Brian Russo Guy Whilden T’Andrea and Edward White Vincent A. Russo Lyda Mihalyi Brad and Haley Winstead Crystal Smith Susan and Robb Teer Darrell Boyette Springfield College Ryan Moorhouse F. Marcus Youngblood Debra Starr Lillian Moorhouse Lillian M. Youngblood Nancy Stauder Justin Morrell Mr. and Mrs. Gerald Thomas Ann and Geoffrey Morrell MEMORIALS Susan and Thomas Wilkat Ellen and Michael Morrell Megan Wise de Valdez Hayden Munger Reba Batten Bone Susan Woodard Karen Miller Joni and Jarles Alberg Margaret Watts Chief Master Sergeant David Zeb D. Alley Marcy Zeplin Niehaus Association of Official Court Walter W. Carmichael Pope Air Force Base Chief’s Group Reporters Sylvia E. Dixon Our Wedding Guests Emily Ballance Marion and C. Gordon James Amanda Diorio and Michael Drains Kathryn and Marion Barnes Longhurst United Methodist Church Graham Parker Barbara and Charles Darden William Croom Brandon Harrell Wanda and P. H. Daughtry Lillian Moorhouse Daniel Phillippi Mr. and Mrs. Wayne E. Doll Richard Anthony Diemer Margaret and Paul Phillippi Kristine Green Helen and Arthur Williams Elizabeth Phillippi Carol and Thomas Ludwig Bonnie Roberson Dilday Marcia Dorfman Sherry Melton Joyce Ann Bell The Psioda Family North Carolina Association, Long Starboard Capital Partners Patricia J. Hawkins Term Care Facilities Betty J. Ferguson Joe Robb North Carolina Propane Gas As- Kim Bigelow Laurie and Jay Robb sociation, Inc. Robert Burns Ferguson Phyllis and Hilton Renfrow Kim Bigelow

26 www.autismsociety-nc.org www.autismsociety-nc.org Ellis G. Donna and Joseph Scaricaciottoli Selena and Adam Cohen Rosemary and William Smith Mary Josephine Gentry Constance M. Steinhagen Call-A-Nurse Jerry V. Plummer James Warren Gore Gladys and Jerry Baker Diane and Daniel Arventos Rebecca Carpenter Deborah and John Gore Martha and James Clamp Monica Sherman Jim Wade and Larry Deery Barbara and Crawford Smith Sara Puckett Velma Sue and Clay Wilkes Leslie O. Wilson Sara Handlan Debby and John Windell Laurie A. Kozar Fleta S. Windell Jane Hammes Mildred Snyder Lillian K. Hawke Dr. and Mrs. Orion Finklea Ann Margaret Hartis Gerson S. Veiga Karen and Michael Reavis Ella J. Davis Scott P. Haviland Deborah and Stephen Miller Phyllis Daniele Groce United Methodist Church Vicki and David Demaster Ruth Wagon Farmington Woods Magnet El- Maureen and Rob Morrell ementary School’s Hospitality Fund Josephine Wright GSK OffShore Admin Team Elwanda and Ted Cook GSK Team of India Hilda and Johnny Isaacs Kathryn Greengrove Mary C. Key Marguerite Gross Freda C. Sanders Daniel Hibbitts Julia Price Scott Kalon Jeffries JoAnne and William Jeffries Glenda and Thomas Jeffries Ernest Lenwood Jenkins Christine and John Killela Mary Kathleen Grubbs Jenkins Lannie and Bruce Durham Judith Jenkins Whitehall Evangelical Methodist Church Dr. Michael R. Katz Linda K. Clemmensen Shirley Snyderman Ruth Kendrick Maureen and Rob Morrell Judy Bowen Leggett Ann and Randall Graham April and Aaron Stutzman Dorothy and Gary Tharrington Martha J. Lloyd Kitty L. Lassiter Constantine George Machikas Ellen and Scott Furman Anne Halkedis Karen Mauldin Lucille and Richard Floyd John J. McGovern Jean and Mark Calkin Connie and Paul Cheever Betsy T. Douglass Patrice and Thomas Galvin Theodore “Erby” A. Oponski Anne M. Assenheimer Marilyn and Louis DeLuca Loretta M. Hennessey Rose and Edmund Oponski www.autismsociety-nc.org www.autismsociety-nc.org 27 Non-Profit Org. U.S. Postage PAID Raleigh, N.C. Permit No. 2169

New Awareness Items Order Today!

16 oz. BPA-Free Drinking Cup- $10 Cup includes a reusable plastic straw and is perfect for hot and cold drinks. The cup features the ASNC logo and is dishwasher safe.

I Love Someone with Autism Ribbon Car Magnet- $5

25 oz. Aluminum Drinking Bottle- $10 The bottle includes a carabiner and is perfect for hot and cold drinks. The bottle features the ASNC logo.

To purchase online, please visit www.autismsociety-nc.org and click on Awareness Items under the Shop tab. To purchase over the phone or for large orders, please contact Brooke Tonkin at 919-865-5064 or [email protected].

Items above were photographed with a black background.