Spectrum: Summer 2012 by Autism Society of North Carolina

Spectrum the

Volume 28, No. 2 • issn 1044-1921 • summer 2012

North Carolina’s

Managed Care Transition what is it? what do you need to know?

Latinos and Autism

unique challenges and considerations

Selecting a

Social Skills Group www.autismsociety-nc.org

TABLE OF CONTENTS FEATURES:

ALSO IN THIS ISSUE:

After Graduation - What Comes Next?

Message from the CEO

VACATIONING WITH A CHILD ON THE AUTISM SPECTRUM

Chapters, support groups, aND Affiliates

LATINOS AND AUTISM (LATINOS Y AUTISMO)

Hispanic Affairs

Public Policy Advocacy

SELECTING A SOCIAL SKILLS GROUP

Bookstore News and Reviews

FROM FAMILY FUN DAYS TO OVERNIGHT CAMP

Fundraisers and Events

NORTH CAROLINA’S MANAGED CARE TRANSITION

Volunteer Spotlight: Addy Miller

SERVICES 101: WHAT YOU NEED TO KNOW ABOUT MEDICAID AND CAP

Donations

Mission Statement

THE SPECTRUM

The Autism Society of North Carolina is committed to providing support and promoting opportunities which enhance the lives of individuals within the autism spectrum and their families.

The Spectrum (ISSN 1044-1921) is published in January and July by the Autism Society of North Carolina, Inc. © 2012. All rights reserved. Viewpoints expressed are not necessarily those of the Autism Society of North Carolina, Inc. or its Board of Directors.

VISION STATEMENT The Autism Society of North Carolina strives to create a community where people within the autism spectrum and their families receive respect, services, and support based on individual differences, needs, and preferences.

Privacy Policy The Autism Society of North Carolina respects the privacy of its members and those who receive our publications. We do not sell or otherwise share our mailing list, email notification list or any other personal information with other businesses or organizations.

Editor: Terry Ramsay Graphic Designer: Beth Haynes Reader input, photographs and articles are welcome. Articles can be emailed (preferred), faxed or mailed. Please send any correspondence regarding this publication to Terry Ramsay, Autism Society of North Carolina, 505 Oberlin Road, Suite 230, Raleigh, NC 27605 or fax (919) 7430208 or email editor@autismsociety-nc.org.

The deadline for submissions for the Winter 2013 Edition is December 2, 2012. 505 Oberlin Road, Suite 230 • Raleigh, NC 27605-1345 919/743-0204 • 800/442-2762 • Fax: 919/743-0208 www.autismsociety-nc.org

ASNC is also supported by:

www.autismsociety-nc.org

MESSAGE FROM THE CEO In March of this year, the Centers for Disease Control and Prevention (CDC) released new incidence rates for autism, estimating that 1 in 88 American children is affected by the disorder. This was a jump of 23% since the last estimate two years ago. Even more jolting was the data for North Carolina, which estimated that 1 in 70 children in our state has ASD - up from 1 in 97 in 2010. There are many theories as to why the prevalence rates continue to increase so dramatically, including better awareness, more accurate diagnosis, and concerns about environmental factors. And the numbers in North Carolina may also reflect the influx of newcomers moving to the Triangle and Triad areas, since the estimate is based on an eleven county area in the central part of the state. At this point there is no definitive answer to the cause(s) of autism or why the incidence rate is growing so rapidly. Regardless, we are hopeful that these alarming numbers will alert the public and our policy makers to the magnitude of the challenges that face our communities. The new prevalence rates underscore the fact that autism affects every school, community, and local economy in North Carolina. As the number of individuals affected by autism continues to grow, we will keep you informed about the most topical and pressing issues impacting our state. One issue on everyoneâ&#x20AC;&#x2122;s mind is the conversion of Medicaid services to a managed care system.

BOARD OF DIRECTORS Chair Beverly Moore

Immediate Past Chair Martina Ballen

Vice Chair Sharon Jeffries-Jones

Secretary Darryl R. Marsch

Treasurer Elizabeth Phillippi

North Carolina is undergoing a huge change in the way care is provided to individuals with developmental and intellectual disabilities. This transition involves moving the administration of Medicaid services from local management entities (LMEs) to managed care organizations (MCOs). We will explain the basics of Medicaid services, how to apply, what they cover, and alternative funds on page 26. In addition, we will explore progress in the transition and provide the latest information on how it impacts your family on page 24.

Representatives

We will also take a look at the largest growing sub-group in our stateâ&#x20AC;&#x2122;s autism community, Latinos with ASD. This article, on page 10, discusses the unique challenges that many Latino families face when raising a child on the autism spectrum.

Susanne Harris

Last, we will continue to provide practical advice that benefits families and professionals. On page 17, Training Manager Leica Anzaldo weighs in on social skills intervention options and finding a program that best suits the individual needs of your loved one. As always, we will continue to advocate for the best quality of life for North Carolinians affected by autism and those who care for them. Thank you for your continued support of the Autism Society of North Carolina.

Sharon Blalock John Cavanaugh John Delaloye Stephen Dougherty Ray Evernham Ruth Hurst, Ph.D. Monique Justice Taunya Land Fran Pearson Michael Reichel, M.D. Dale Reynolds Steven N. Scoggin, Psy.D. Hernan Sedda

My best,

Community Representative John Townson

Tracey Sheriff Chief Executive Officer

www.autismsociety-nc.org

ASNC + ADVOCACY 4

www.autismsociety-nc.org

AFTER GRADUATION WHAT’S NEXT? By Kathleen Dolbee

Graduation day is a big deal. If your child has an IEP, from the time he turned 14 his team has been guiding and supporting his transition to the world that lies beyond the school campus. It was an especially poignant time for me, both as a parent and as an educator, when my son completed the requirements for graduation. In addition, I had grown very close to several of the children I first worked with in the public school system who were also graduating. In planning a graduation party, I took a long stroll down Memory Lane. The combination of bittersweet memories and trepidation about the future left me feeling slightly nostalgic and slightly nauseous. For parents of kids on the autism spectrum, public school can be like a wild ride at an amusement park. Most years begin with optimism and excitement, by mid-year we are hanging on for dear life and by year’s end, we just want the ride to be over. Summer brings with it new challenges and by the time the new school year rolls around, we’re ready to begin again, crossing our fingers. While we may lose our naïve optimism, at least the routine is a familiar one. Not so for parents of high school graduates. There is nothing familiar about what lies ahead. Guardianship, SSI, college,

trade-school, sheltered workshop, job interviews, finding the needed services, group home, stay at home, or independent living: these are all uncharted territory. This is the real-life test that will reveal the strengths and/or flaws of the transition plan that began all those years ago. Young adults with HFA/Asperger’s Syndrome are often able to do a job, but have difficulty with the interview process and often lack the social and organizational skills to stay employed. If they are attending a community college or university, it will be necessary for them to learn about disclosure in addition to selfadvocacy skills. Parents of young adults with more profound challenges face different obstacles. School has provided a place to go and engaging activities. Often these are sadly lacking in the world beyond the school campus. Having learned what’s what and who’s who within the school system, many parents find themselves novices again, unsure about what their rights are and what they can reasonably request. For kids in school, graduation looks like a finish line. But those who have already crossed that threshold have learned that it is just the beginning – which is likely why the graduation ceremony is called “Commencement.” u

ASNC Parent Advocates offer workshops to help parents understand the transition process as it applies both to school and life beyond school. Contact your local Parent Advocate to find out more about training opportunities or schedule a one-on-one meeting to help you make a plan for the future.

www.autismsociety-nc.org

Vacationing with a Child on the Spectrum By Lisa Lindsey

Over spring break this year, I took my son Christopher, 8, to Washington, DC. While the thought of going by ourselves was a bit daunting, we both had a wonderful time – I’m so glad we went. With the right planning and preparation, it can be possible to have a family vacation that your whole family will enjoy.

wanting to subject Christopher to the rigid requirements of air travel, we went to Washington via Amtrak. We were both able to relax, Christopher could get up and move around when he needed to, and there were bathrooms and snacks available. And he has always loved trains, so getting there really was half the fun!

Choosing your destination carefully is one of the keys to having a good trip. For example, my son doesn’t like roller coasters or costumed characters, so a trip to Disney World wouldn’t have been the best choice for him. And a trip we took a few years ago to Tweetsie Railroad didn’t go that well – there were people shooting off cap pistols everywhere. But Christopher likes museums, which made Washington a perfect destination for us. (And as an added bonus, most of them were free.) If you are traveling with neurotypical family members, it may be possible to plan separate outings for part of the day, especially if some attractions are too intense or crowded for your child on the spectrum.

Don’t forget to pack items that may be especially important for your child. Put together an “emergency kit” for your child and keep it handy – for my son, that includes noise-cancelling headphones, sunglasses, sugarless chewing gum, hand sanitizer, and wet wipes. Having a favorite toy along can be especially reassuring. And don’t forget your camera!

If travel is not a routine experience for your child, preparing him for the trip is essential. A guidebook for your destination, written especially with children in mind, can be a big asset. So can websites. Use your child’s special interest to help draw him in. Christopher likes maps, and he loved looking at a tourist map of Washington, with the locations of various attractions clearly marked. He loves visuals, and being able to see where we would go helped him to get excited about the trip, while also helping to reduce the anxiety he felt about going to a new place. Also, consider your mode of transportation. The recent restrictions on air travel, not to mention the ever-increasing fees, may make it a less attractive option. Knowing that traffic and parking in DC can be a nightmare, and not

Once you arrive at your destination, try to keep your daily agenda fairly simple. Invariably, the travel days that we didn’t enjoy as much were the days when we simply tried to do too much. Being around lots of noise and crowds of people can be especially hard for children on the spectrum, so build plenty of downtime into your schedule. Focus on one major attraction per day, adding in shorter outings as your family can tolerate them. We were lucky enough to stay in a hotel that was within walking distance of the Smithsonian, so when Christopher needed a break, it was easy for us to head back to our room for a while. He relaxed with a cartoon or a video game, and then we were off again. Our recent vacation was not without its rough spots – my son had three meltdowns in the hotel restaurant because they kept bringing him plates of food with lettuce and tomato garnish on them. And on the train, I had to keep reminding him not to push his feet against the back of the seat in front of him. But the fun we had, and the things Christopher was able to see and experience, made it worth every minute. u

www.autismsociety-nc.org

CHAPTERS, SUPPORT GROUPS, AND AFFILIATES u The Onslow County Chapter presented the 3rd Annual Autism Awareness Information Forum on April 14. The event highlighted how ASNC and other autism groups and resources help families in the community. The feature presenter, Gabrielle Martino of Disability Rights North Carolina, spoke on self-advocacy. D.J. Svoboda, creator, artist, and author, presented “The Imagifriends of Imagiville.” u In April, the Forsyth County Chapter joined with other local organizations to put together an Autism Awareness Day at the DASH Ballpark. Chapter leaders Julie Coulter and Stephanie Reitz and ASNC Parent Advocate Judy Smithmyer, along with representatives from the ABC of NC Developmental Center of NC and iCan House, provided information about autism and local support groups to those attending the baseball game.

On April 26, the Moore County Chapter celebrated both National Poetry Month and Autism Awareness Month in a unique event. The Chapter held an evening of poetry readings by local student poets and information about autism awareness at the Mellow Mushroom Restaurant in Southern Pines. This fundraiser/awareness event, “Uniquely You,” was designed to celebrate the special characteristics of poetry and the individuality of people on the autism spectrum. The funds raised during this event are being used to benefit Moore County individuals diagnosed on the autism spectrum and their families. Mellow Mushroom owner Mark Dunahay remarked, “What a great turnout. I look forward to next year’s program.”

Amanda Lundy, Autism Itinerant for Randolph County Schools, taught a unit on ASD for the fourth grade class at Coleridge Elementary which culminated in an Autism Awareness Celebration on April 27. Wanda Curley, Parent Advocate, attended on behalf of ASNC. At the end of the event, they presented funds raised by the Coleridge Elementary School students and staff in hopes of aiding the Randolph County Support Group in its ongoing work with local individuals and families.

u The Autism Society of Cumberland County recently hosted a Vera Bradley Bingo Night, an evening that included games, door prizes, and concessions. Proceeds from this fun-filled event support the ongoing efforts of the ASNC Affiliate in Cumberland County.

www.autismsociety-nc.org

u The Cherokee County Chapter featured guest speaker and award-winning author Ann Palmer at their May meeting. Ms. Palmer‘s presentation, “Supporting Those Who Love Someone with Autism,” included insights from her latest book, A Friend’s and Relative’s Guide to Supporting the Family with Autism- How Can I Help? Ms. Palmer discussed what living with ASD is like for parents and what types of support a family may need. Ms. Palmer also spoke at the following Chapter and support group meetings: Franklin, Onslow, Wake, Orange/Chatham, Richmond, and Alamance.

The Crystal Coast Chapter, the Surry County Chapter, the Cabarrus County Chapter, and the Pitt County Chapter held successful Run/Walk events this spring.

[

For more information on the Run/Walks, please read about our fundraisers on page 28.

]

The Wake County Chapter held a Teacher Appreciation Dinner in April to honor special teachers who serve children with autism. Tim Tucker, parent of a child on the spectrum, presented his child’s teachers with their awards. In his blog, www.bothhandsandaflashlight.com, Mr. Tucker says of the event, “It was my privilege to stand up in front of a room full of their peers and administrators and say with my heart that these amazing teachers have, through their talents and love of our kids and teaching, given us a gift beyond value – a hope-filled future for our kids. And we hold them up as the highest examples not only of teachers but of people. We should all aspire to be as awesome at what we do in life as they are.”

Here is his tribute:

We Will Remember For every new word our children speak, for every hug and smile they give us, We will remember. For each marvel our kids amaze us with, for every act of kindness they share with another, We will remember. For encouraging and believing in our dear children, for making each child feel like your favorite, for helping them to love and feel loved, We will remember. For every scary new thing they bravely attempt, for every problem they solve on their own, for every so-called ‘impossible’ goal they achieve, We will remember. For being an unshakable team when so much seems against us, for your lessons of perseverance, for teaching us that together we are stronger than we are alone, We will remember.

Someday when our children walk across the stage, when they get their first paycheck, when they go to live on their own, We will remember. For as far as they will yet go we know how far they have come. We will remember that you made this possible. For your amazing gifts, for your gift to us of our children’s bright future, We will remember and speak your names with honor as the foremothers of their futures. We will remember yours is not just a classroom. It is hope, a haven, a sanctuary, a place where wonders are born and reborn every day. We will always remember.

www.autismsociety-nc.org

WHAT PEOPLE ARE SAYING ABOUT OUR CHAPTERS, SUPPORT GROUPS, AND AFFILIATES Since my very first meeting almost two years ago, I knew that these people would become my life-long friends. They understand me on a level that most of my own family doesn’t. I feel like being in this group makes me a part of something that is bigger than just my situation. I feel welcomed, loved, and most importantly, accepted. u Miranda Adams Leadership Team Member, Harnett County Chapter

“It is invaluable to have friends who understand what life with autism is like...”

The Union County Chapter has been instrumental during my family’s journey with autism. There was a tremendous amount of information from all over the world but what we really needed was a personal connection to someone who had started the journey before us. One of the most wonderful things about being a member for several years now is that I have become one of the personal connections that someone else is looking for. Currently, I serve on the board and it is one of the most rewarding things I have ever done. u Jennifer Fabrizio Treasurer/Leadership Team Member, Union County Chapter

“They understand me on a level that most of my own family doesn’t... I feel welcomed, loved, and most importantly, accepted.”

Being part of a Chapter helps me shrink down my community to something meaningful to me. It means I have a place to go to ask my questions and get them answered by people just like me who have been there. It means acceptance. And for me personally, it means I have places to go with my son where he fits right in. u Leslie Welch, Wake County Chapter Leader

We moved to Fayetteville from Arizona shortly after my son was diagnosed with autism. I contacted the Autism Society of Cumberland County soon after we settled here. They were ready to answer all my questions and also had a packet with tons of information about services in the community. I have been attending monthly Parent Education Programs and support groups since then. I love having a place to go to interact with other people who are dealing with some of the same issues that I have. It is a tremendous relief to know that you are not alone. u Angie Smith Parent, Autism Society of Cumberland County

We have made so many new friends. It is so good to feel the support we each offer the other. We have had guest speakers in to enlighten us on issues that we deal with every day. Each member brings so much to our group. We laugh together. We cry together. u Annette Horsley Davidson County Chapter Leader

I have been involved with this Chapter since my son’s diagnosis in 1998.The parents in this group were a great comfort and resource to us at that time, and they continue to be. I appreciate the support I received and I enjoy being able to share what I’ve learned with other parents, and hopefully make things a little easier for them. It is invaluable to have friends who understand what life with autism is like, and to be able to share our struggles and joys with each other. u Melonia Anderson New Hanover County Chapter Leader

www.autismsociety-nc.org

“Each member brings so much to our group. We laugh together. We cry together.”

Latinos AND AUTISM:

UNIQUE CHALLENGES AND CONSIDERATIONS Allison Ratto, Doctoral Student in Child Clinical Psychology at UNC-Chapel Hill, is involved in ongoing research into the assessment of Autism Spectrum Disorders, particularly in the Latino population. Her research includes clinical training placements at TEACCH, the Carolina Institute of Developmental Disabilities, and El Futuro Clinic. She has been accepted into the pre-doctoral internship program at the Children’s National Medical Center in Washington, D.C. Allison recently conducted a training session for professionals who serve members of the Latino autism community, presenting valuable information about their unique needs and how to best serve them. This article is based on information presented in the training. Allison has been a valuable volunteer for ASNC, helping to register Spanish-speaking families at workshops and other events, and meeting one-on-one with families to help them develop structure for their loved one with autism. When a family member is diagnosed with autism, it can be emotional and confusing. Locating resources and navigating the service system can be daunting for anyone. Due to educational, economic, language, and cultural considerations, Latino families often face additional challenges. Latinos are the fastest growing ethnic group in North Carolina, totaling 8.4% of the state’s population. However, there are very few healthcare resources available in Spanish, especially in developmental disorders. The majority of Latinos in the U.S. have less than a high school diploma, and income levels are considerably less than white families. In fact, 1/3 of the Latino population lives below the poverty line. These factors are important when considering that autism is a complicated diagnosis that is often misunderstood among highly educated people, and that treatment for autism is expensive. In addition, Latino families often have a harder time accessing resources for diagnosis, treatment, and support because of language and economic barriers. Although it is widely accepted that true ASD prevalence rates are the same across race/ethnicity, Latino children are less likely to be diagnosed than their white counterparts. They are also more likely to be misdiagnosed with disorders such as oppositional defiant disorder or ADHD, and they generally receive a correct autism diagnosis 1-3 years later than average. Contributing factors include:

u u u

Difficulty in relying on a translator with a complex medical diagnosis such as autism, Parents’ lack of knowledge about autism and appropriate developmental milestones, Difficulty in assessing a true communication disorder versus the natural speech delays that occur when a child is learning to communicate in two different languages, and Discomfort among the medical community in communicating with non-English speaking families.

One difficult decision that Latino families with a child with ASD face is whether the child will speak English, Spanish, or both. Families must consider the child’s developmental level and the child’s need to communicate with both the family and the community. To help foster the development of social skills, learning English is almost always a necessity, but it is difficult for families that speak their native language at home. A dual language environment is often the goal, but it is important to realize that it may not be attainable for everyone. Some Latino families have a hard time accepting a diagnosis of autism and what it means long-term. They tend to focus on pinpointing what “caused” the autism, such as something that happened during the pregnancy. Once the diagnosis is accepted, they are often drawn to promises of medical “quick fix” treatments. Coping with the challenges of autism is a strength of Latino families. While they may experience the same denial and grief reactions as other parents, they often have a greater extended family and social support system. They also tend to be more comfortable with their adult children with ASD living at home with them, and they experience less angst about their child not achieving at the levels of typically developing children. u For more information about Latinos and autism, including support groups and trainings, please contact Mariela Maldonado, Hispanic Affairs Liaison, at (919) 865-5066 or mmaldonado@autismsociety-nc.org. Para mayor información sobre latinos y autismo, incluyendo grupos de apoyo y entrenamiento, por favor contacte a Mariela Maldonado, Hispanic Affairs Liason, al (919) 8655066 o a mmaldonado@autismsociety-nc.org.

www.autismsociety-nc.org

Latinos y Autismo (EN ESPAÑOL): Desafíos y consideraciones únicas

Allison Ratto, estudiante de doctorado de psicología clínica infantil en la Universidad UNC-Chapel Hill, está involucrada en una investigación actual sobre la evaluación del Autismo, particularmente en la población latina. Su investigación incluye practicas clínicas de capacitación en TEACCH, el Instituto de Discapacidades del Desarrollo, y la clínica El Futuro. Ella ha sido aceptada en el programa de internado pre-doctoral en el Centro Médico Nacional de Menores en Washington, D.C. Ella condujo recientemente una sesión de entrenamiento para profesionales que sirven a miembros de la comunidad latina con autismo, presentando valiosa información sobre sus necesidades únicas y como servirles mejor. Este artículo se basa en la información presentada en el entrenamiento. Allison ha sido una voluntaria valiosa para ASNC, ayudando a registrar familias hispano-hablantes entalleres y otros eventos, y en reuniones uno a uno con familias para ayudarles a desarrollar una estructura para su ser querido con autismo. Cuando un miembro familiar es diagnosticado con autismo, puede ser emocional y confuso. Localizar recursos y navegar el sistema de servicios puede ser desalentador para cualquiera. Debido a consideraciones educacionales, económicas, de lenguaje y culturales, las familias latinas se enfrentan usualmente con desafíos adicionales. Los latinos son el grupo étnico con un mayor crecimiento en Carolina del Norte, con un total de 8.4% de la población estatal. Sin embargo, son pocos los recursos médicos disponibles en español, especialmente sobre desórdenes del desarrollo. La mayoría de los Latinos en los Estados Unidos tienen menos que un diploma de la Secundaria y su nivel de ingresos es considerablemente menor de las familias caucásicas. De hecho, 1/3 de la población latina vive por debajo de la línea de pobreza. Estos factores son importantes cuando se considera que el autismo es un diagnóstico complicado que usualmente no es comprendido entre personas altamente educadas, y cuyo tratamiento es muy caro. Además, las familias latinas usualmente tienen mayor dificultad para accesar a recursos de diagnóstico, tratamiento y apoyo debido a barreras de lenguaje y económicas. A pesar de que es ampliamente aceptado que las verdaderas tasas de prevalencia de ASD (Desorden del Espectro del Autismo por sus siglas en ingles) son las mismas para cualquier raza/etnicidad,

los niños latinos tienen menos posibilidad de ser diagnosticados que sus contrapartes caucásicas. Tienen más posibilidad de ser mal diagnosticados con desordenes como el trastorno de oposición desafiante o ADHD, y generalmente se recibe un diagnóstico correcto de autismo en un promedio de 1-3 años posteriores . Los factores que contribuyen a esto incluyen: u u u

Dificultad de depender de un traductor para explicar un diagnóstico médico complejo como el autismo. La falta de conocimiento de los padres sobre el autismo y metas del desarrollo apropiadas, Dificultad en asesorar una comunicación verdadera del desorden en contra de retrasos naturales del habla que ocurren cuando un menor está aprendiendo a comunicarse en dos lenguajes diferentes, e Incomodidad entre la comunidad médica en comunicarse con familias que no hablan inglés.

Una difícil decisión que las familias latinas con un hijo con ASD enfrentan es ya sea si el niño podrá hablar inglés, español o ambos. Las familias deberán considerar el nivel de desarrollo del menor y la necesidad del menor para comunicarse tanto con su familia como con su comunidad. Para ayudar a fomentar el desarrollo de habilidades sociales, aprender inglés es casi siempre necesario, pero es difícil para las familias que hablan su idioma nativo en el hogar. Un ambiente de dos lenguajes es usualmente la meta, pero es importante tomar en consideración que no todos lo podrán logar. Algunas familias latinas tienen dificultad en aceptar el diagnóstico de autismo y lo que significa a largo plazo. Tienden a enfocarse en intentar localizar lo que ha “causado” el autismo, tal como, que es lo que sucedió durante el embarazo. Una vez que el diagnóstico es aceptado, usualmente les atraen promesas de tratamientos médicos de “soluciones rápidas.” Lidiar con los desafíos del autismo es una fortaleza de las familias latinas. Mientras tanto que ellos pueden experimentar la misma negación y reacciones de duelo que otros padres, usualmente tienen una gran familia y sistema de apoyo social. También tienden a estar más cómodos con sus hijos adultos con ASD viviendo en casa con ellos, y experimentan menos angustia sobre su hijo(a) que no ha logrado los niveles de desarrollo de los niños típicos. u

www.autismsociety-nc.org

HISPANIC AFFAIRS UPDATE White House Hispanic Community Action Summit The Autism Society of North Carolina was thrilled to be invited to participate in the White House Hispanic Community Action Summit on March 17 in Durham. ASNC was the only participating nonprofit organization that represents the needs of Hispanic children with autism and other disabilities. The summit was sponsored by the White House Office of Public Engagement and the White House Initiative on Educational Excellence for Hispanics. The event connected senior Obama administration officials with community leaders, business owners, and other stakeholders to discuss issues critical to the Hispanic community. The goals of the summit included: 1) Establishing a space where community leaders and stakeholders can meaningfully engage and interact with key decision- and policy-makers in the administration on matters involving diverse policy areas that affect the Hispanic community and our nation; 2) Identifying policy and programmatic areas of concern, receiving and responding to constructive criticism and feedback, and highlighting local success stories and practices in policy areas that benefit the Hispanic community; and 3) Identifying and developing opportunities for community leaders and stakeholders to collaborate with the administration and other regional leaders to address the interests and concerns of the Hispanic community. Many thanks to those who attended the summit, including Hernan Sedda, ASNC Board Member, Helen Espinoza, Bilingual Community Services Coordinator, Mariela Maldonado, Hispanic Affairs Liaison, and the following Hispanic Support Group leaders: Catalina Gonzalez, Maricruz Romero, Mercedes Arciniega and Yanely Rodriguez.

Health Department Outreach The Autism Society of North Carolina recently conducted training for the North Carolina Health Department, to help them better serve the growing limited-English proficient population. Genetics counselors, audiologists, speech therapists, physical therapists, school nurses, early child care consultants, and program consultants learned about the challenges and supports that exist for the Hispanic

autism community. ASNC was represented by Helen Espinoza and Mariela Maldonado. Alba Rodriquez and Elvira Ortiz represented ASNC Hispanic Support Groups.

Annual Conference Scholarships for Hispanic Families Thirty-five scholarships to the Annual Conference were provided to Hispanic families that live across the state. Thanks to the contributions of private businesses and donations collected at autism awareness events in the Hispanic community, these Spanish- speaking families were able to attend this important event and benefit from simultaneous interpretation. Special thanks to the Catholic Diocese of Charlotte, who donated the translation equipment. This equipment will be used for translating trainings for Spanish speaking families. Nancy Nestor, Regional Chapter Support Leader in Charlotte, said, “The opportunity to learn more about autism and the chance to discover useful strategies that help is one of the greatest gifts that we offer parents. Often, the Chapters that are near the Annual Conference support families by offering scholarships. The Mecklenburg County Chapter presented a donation to cover conference attendance for eight Hispanic family members from Charlotte. “This act of generosity inspired the Charlotte Hispanic Support Group. On two Saturday afternoons, they set up an autism information table and collected donations outside of Compare Foods. The group collected enough funds to send four more people to the Annual Conference. I am so impressed by the compassion that drove these groups to action, helping us to fulfill our mission of reaching all people affected by autism in our state.” u For more information in Spanish on support groups, workshops, and other events that support the Hispanic community, please contact Mariela Maldonado, Hispanic Affairs Liaison, at (919) 865-5066 or mmaldonado@autismsociety-nc.org. Para más información en español acerca de grupos de soporte, talleres, y otros eventos que brindan apoyo a la comunidad hispana, por favor contacte a Mariela Maldonado, enlace de asuntos hispanos, al 919-865-5055 o mmaldonado@autismsociety-nc.org.

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NOTICIAS DE LA COMUNIDAD HISPANA: EN ESPAÑOL

Conferencia Cumbre de Acción Comunitaria Hispana de la Casa Blanca La sociedad del Autismo en Carolina del Norte se ha entusiasmado por haber sido invitado a participar en la Conferencia de Acción Comunitaria Hispana de la Casa Blanca el 17 de marzo en la ciudad de Durham. ASNC fue la única organización sin fines de lucro participante que representó las necesidades de niños hispanos con autismo y otras incapacidades. La conferencia Cumbre fue patrocinada por la Oficina de la Casa Blanca de Actividad Pública y la Iniciativa de la Casa Blanca para la Excelencia Educacional de Hispanos. El evento conectó oficiales ejecutivos de la administración de Obama con líderes comunitarios, dueños de empresas y otras partes interesadas para discutir asuntos críticos de la comunidad hispana. Las metas de la conferencia incluyeron: 1) Establecer un espacio donde líderes comunitarios y partes interesadas puedan participar de modo significativo e interactuar con diseñadores de y responsables para tomar las decisiones en la administración sobre asuntos que involucran áreas diversas de que afectan la comunidad hispana y nuestra nación; 2) Identificar pólizas y áreas programáticos de preocupación recibiendo y respondiendo criticas constructivas y de retroalimentación, y destacar historias de sucesos éxitos y practicas que benefician la comunidad hispana; e 3) Identificar y desarrollar oportunidades para que los líderes comunitarios y partes interesadas puedan colaborar con la administración y otros lideres regionales para enfrentar los intereses y preocupaciones de la comunidad hispana. Nuestro agradecimiento a los participantes de la conferencia que incluye Hernán Sedda, miembro de la junta Directiva de ASNC, Helen Espinoza, Coordinadora Bilingüe de Servicios Comunitarios, Mariela Maldonado, Enlace de Asuntos Hispanos, y los siguientes lideres de los Grupos Hispano de Apoyo : Catalina González, Maricruz Romero, Mercedes Arciniega y Yanely Rodríguez.

Cumbre Comunitaria del Departamento de Salud de Carolina del Norte La sociedad del Autismo en Carolina del Norte recientemente

participó como expositor en un entrenamiento organizado por el Departamento de salud de Carolina del Norte para ayudarles a que puedan ofrecer un mejor servicio a la creciente población de personas limitadas en su comprensión del Ingles. En este evento participaron profesionales como genetistas, concejeros, audiologos, terapeutas, enfermeras de las escuela, consultores de programas de intervención temprana. Este personal aprendió acerca de los retos y el apoyo que necesitan la comunidad hispana con autismo. Helen Espinoza y Mariela Maldonado, representaron ASNC, y Alba Rodríguez y Elvira Ortiz representaron los Grupos de Apoyo de Padres Hispanos de ASNC.

2012 Conferencia Anual de ASNC - Becas para familias hispanas Treinta y cinco becas para asistir a la 2012 Conferencia Anual de Autismo fueron provistas a familias hispanas que viven a lo largo del estado. Gracias a las contribuciones de negocios privados y donaciones recaudadas en eventos de concientización de autismo en la comunidad hispana, estas familias que hablan español pudieron atender este importante evento y se beneficiaron de la interpretación simultánea. Nuestro agradecimiento especial a la Diócesis Católica de Raleigh que donaron los equipos de traducción. Este equipo será usado para las traducciones en los entrenamientos para las familias Hispanas. Nancy Néstor, Coordinadora Regional de las Subdivisiones en área de Charlotte, dijo, “La oportunidad de aprender más sobre autismo y el chance de descubrir estrategias útiles que ayudan es uno de los regalos más grandes que brindamos a los padres. Frecuentemente, los sucursales que se encuentran cerca del lugar donde se realiza la Conferencia Anual apoyan a las familias al ofrecer becas. La Sucursal del condado de Mecklenburg brindó una donación para cubrir el costo de asistir la conferencia para ocho miembros de familias hispanas de Charlotte. “Este acto de generosidad inspiró al grupo de apoyo hispano de Charlotte. En dos oportunidades se instalaron una mesa de información de autismo que recaudó donaciones afuera de la tienda Compare Food. El grupo recaudó suficientes fondos para becar cuatro personas más a la Conferencia Anual. Estoy tan impresionada por la compasión que dirigió a estos grupos y que nos ayudó a satisfacer nuestra misión de alcanzar a toda la gente de nuestro estado afectada por autismo.” u

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PUBLIC POLICY ADVOCACY:

AN INTERVIEW WITH JENNIFER MAHAN, DIRECTOR OF GOVERNMENT RELATIONS Can you provide an update to this year’s legislative “short session?” How have things progressed? What are the successes and/or setbacks?

There is still the potential to see $10 million in additional cuts to state-funded services, including things like developmental therapies, but we are working to make sure that does not happen.

This short session of the NC General Assembly likely won’t be finished until the end of June or the beginning of July, but as of this writing, we are cautiously optimistic that there will not be additional cuts to developmental disability services. New funds for additional CAP slots, a crisis program like START for kids, or to fund more CAP slots appear unlikely. But given the ongoing economic climate, legislative observers did not expect to see expansion of services and supports. Legislators are being cautious with new funds, and waiting to see what happens as the state implements managed care waivers.

One of the biggest disappointments has been the reluctance to address issues for people with intellectual and developmental disabilities in the new managed care waivers. ASNC and other disability organizations are advocating for legislation that would:

One of the most positive moves has been the proposed changes to the “Special Assistance” program that provides a stipend to low income individuals with disabilities to get services at home and in licensed facilities such as adult care homes. For many years, ASNC has advocated that these funds be used more equitably – that the payment remains the same regardless of where the individual lives. These would be positive changes for people on the autism spectrum who could then live in and get services in homes and community based settings.

Have services for individuals with ASD and other developmental disabilites been affected by this session? If yes, in what way? We’ve been working hard to make sure that Legislators understand the importance of keeping services and supports in place, and the growing needs of our population. Services have not been affected as much as we were concerned about at the start of the session.

1) provide for independent care coordination and plan development for people with intellectual and developmental disabilities (I/DD), 2) establish a better system to oversee guardianship, and 3) slow down the implementation of managed care to ensure that quality care is maintained.

Is the legislature making progress on addressing waiting lists for services? No, and it’s unfortunate that this is not being directly addressed since we still have 10,000 people on waiting lists. I think the inaction is due to a combination of factors: 1) the budget is still tight, so there isn’t the willingness to fund more services as there has been in the past, 2) with the implementation of managed care, some Legislators are taking a “wait and see” attitude, wondering if the new system will create enough efficiencies to free up money to expand services, and 3) there still seems to be a lot of confusion over access to I/DD services

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Have there been policy/budget changes that families need to be aware of? The new managed care system is the biggest policy change. Under managed care, if you receive CAP/I/DD services, there is no more case management. (Please see the Managed Care Transition article on page 24 for more information.)

Will the Legislature address autism insurance this year? If so, when? If not, please explain why and what the status of that bill is. No, unfortunately the Legislature does not plan to look at autism insurance. We’ve come a long way in getting the General Assembly to understand the need to provide better insurance coverage standards for Autism Spectrum Disorder, at least on the House side, but we’ve not had a similar response from the Senate. Why? That’s always a difficult answer because every Legislator looks at this differently, but in general, the General Assembly is hesitant about requiring insurance coverage, even when it has long term benefits and cost savings. They are also

reluctant to add additional costs to the state employees’ health plan after the huge cost overruns in the program the past few years (autism insurance coverage would add to the cost of the plan). It’s not unusual in North Carolina for bills requiring insurance changes to take a long time to get through the legislative process. The fiscal note (an estimate by the GA of the cost of the bill) is a lot higher than we would have expected based on recent data from implementation in other states. We are advocating for a new fiscal note to be written using new information. Technically, the autism insurance bill is “alive” and could be brought up in committee, but without the commitment of both chambers to move it forward, trying to pass it on one side would doom it to failure. ASNC will be working to secure new sponsors to re-introduce the bill in the 2013 long session. u Please note that this interview was conducted in late June before the conclusion of the short session of the NC General Assembly. For the most up-to-date information on legislative advocacy efforts, please visit our website at www.autismsociety-nc.org or our blog at autismsocietyofnc.wordpress.com.

What can people who care about the autism community do to help ASNC’s legislative advocacy efforts? Get active!

You can connect with your General Assembly Legislators. First, find out who they are; you can do this on the General Assembly website (http://www.ncleg.net) or though your local Board of Elections.

find out who is running in your district.

Also, it’s an election year, so There will be a lot of new Legislators after the November elections because many current Legislators are not seeking re-election and there are new candidates throughout the state.

Start making a connection: Write to your elected officialS

and to candidates, and tell them a short version (a single page if you can) of you or your family’s autism story. Include who you are, how autism has impacted you, what is helping, and what you want to see happen in the future. Ask them what they would do about these issues or ask them to help make these changes happen.

try visiting them in person,

If you have already written your elected officials, either by yourself or with a group. We have a short guide to contacting your Legislator on the website at http://bit.ly/NCLegislator.

at http://bit.ly/ASNCupdates and take action on our legislative alerts when you see one in your inbox! Connect with other parents at your local Chapter and work on contacting your Legislators as a group.

If you need assistance, contact Jennifer Mahan at 919-865-5068 or jmahan@autismsociety-nc.org.

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ASNC + TRAINING AND EDUCATION 16

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SELECTING A SOCIAL SKILLS GROUP BY LEICA ANZALDO

Developing and maintaining relationships is an integral part of life and a factor in overall happiness. Most people have an innate ability to understand social intention and behave in socially appropriate and acceptable ways. This is a skill that we don’t think much about and naturally know how to use, but that is not always the case for individuals with Autism Spectrum Disorders (ASD). People with ASD tend to lack an inherent understanding of other people and social situations, but these are things that can be learned. Now more than ever, children and adults with ASD participate in some form of social skills intervention. The Interactive Autism Network (IAN), which is a project of the Kennedy Krieger Institute, estimates that more than 14% of children (who participate in IAN) are involved in a social skills group. The intent of most groups is to address core social deficits by improving social interactions and overall understanding. This is done through a combination of instruction, role-playing, practice, and feedback. Evidenced based social skills groups target the following skills: perspective taking, conversation, friendship, problem solving, social competence, emotion, recognition, and theory of mind. Selecting a group that meets the needs and abilities of your loved one takes some foresight and planning. The first step is to consider what primary areas of social skills need to be addressed. Keep in mind that you may have to prioritize and evaluate which skills have true social validity and which skills are those that are simply important to you rather than the individual’s success. What are those skills your child or loved one is missing that may prevent them from: being successful in school, making friends, finding and maintaining employment, exploring new activities to expand their interests, determining their skills and goals, and most importantly, finding happiness and fulfillment? Secondly, the abilities of the child or adult are also critical to choosing the right program. Look at the following factors: age, developmental level, cognitive level, and context of the group. The primary areas of social skills deficits are nonverbal communication, social initiation, social reciprocity, and

social cognition. Some questions to ask when determining ability levels are: 1. Can the individual integrate and understand the non-verbal and contextual cues in the environment? 2. Does the individual fail to initiate with others (except those who are most familiar) or do they initiate often but inappropriately? 3. Does the individual understand and practice the give and take of social interactions? 4. Does the individual understand the intent, motives, and behaviors of themselves and others? Thirdly, the group facilitator should have a process in place to evaluate the individual’s present level of social abilities and needs. If a group does not have a formal assessment process, it may be that a questionnaire, observation, interview, or combination of methods are used to assess the individual’s present level of performance. Ask the program leaders what skills they are focusing on and see how that fits with your assessment information. While social opportunities are important, if the group is simply a gathering of individuals in a social environment, don’t expect discrete teaching of skills or significant gains in the individual’s ability to use and generalize social skills. In addition, if the group is teaching social skills, there should be observable, measureable outcomes written for each group member that are evaluated throughout the process. That information should be shared periodically or at the completion of the group with the individual and/or their caregivers. Without this feature, it is impossible to determine if the group is effective. A good program will include teaching skills and an opportunity to practice what is being taught. In order to accomplish this, the individual with ASD needs to be motivated to learn and practice the skill. Using high interest materials to keep the members of the group motivated is a must, as is structuring the activities so that each individual’s needs are addressed. Ask the group (continued)

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leaders to point you to the aspects of the group that support skill acquisition versus maintenance and practice of skills. Lastly, make a plan for generalization. Itâ&#x20AC;&#x2122;s important that the individual practices skills learned in the group in a variety of other settings (home, community, job, school, etc.) and with other people. Ask the group facilitator for assistance in strategies for generalizing and maintaining these skills beyond the group. Individuals with ASD need repeated practice in multiple environments to master skills. Without this, the skill will likely end when the group does. There are many social skill interventions that are research based. Here are just a few: Social Stories (Gray, 2000) can be used to teach social concepts and bring clarity to social situations. Each story is unique to the child or adult and should be something the child or adult can read independently. The story may include pictures or visual representation of concepts. Video Modeling shows desired behaviors through video. The individual watches the video and then imitates the behavioral model in a real time setting. The video may contain video of the individual using the behavior (VSM, video self-modeling) or of another person. Keep in mind the cognitive level of the person and that he/she must understand that what is being modeled is something they are being encouraged to replicate.

how it makes others feel, predicting the consequence, selecting alternative behaviors, and identifying the results of those alternative behaviors. Pivotal Response Training, PRT (Koegel and Koegel) uses reinforcers that are natural to the environment to target four pivotal areas: responsivity to multiple cues, initiation, motivation, and self-management. This strategy focuses on teaching the individuals to respond to environmental cues and context and to initiate with others using their own choices. This program follows the individualâ&#x20AC;&#x2122;s lead to promote and sustain motivation and to teach self-regulation strategies rather than relying on cues from others. Social Scripting provides the individuals with a script of language to use during initiation or conversation. It may involve a peer who also has a scripted response. Generalization and fading of scripts is a very important factor within this strategy. The Autism Society of North Carolina offers a variety of Social Skills groups and clubs. Please contact Leica Anzaldo at lanzaldo@ autismsociety-nc.org or 919-865-5069 for more information. u

Social Problem Solving uses activities with visual components to help the individual navigate social scenarios. This includes identification of the scenario, how it makes the individual feel,

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The 2013 Annual Conference: AUTISM GROWS UP

After a sold-out conference this year, we are pleased to announce that the 2013 conference will return to the Hilton University Place Hotel in Charlotte on February 8-9. To accommodate more attendees, the hotel has increased meeting room capacity, created a larger exhibit hall, and expanded the area for the bookstore and artists with autism showcases. Mark your calendars now and plan to attend the largest annual autism conference in the state. “We look forward to returning to Charlotte for our 2013 conference,” said Tracey Sheriff, ASNC CEO. “Attendance at the conference the past two years has been great, and we have an outstanding facility partner in the Hilton. Our goal is to provide our attendees with superior educational and networking opportunities, and I’m certain we will accomplish that.” At the end of every conference, we ask attendees to provide us with valuable feedback to help us plan for the following year. One of the recurring themes from this year’s feedback is the need to address the topic of children with ASD who are growing into adolescence and adulthood. In response, we have secured internationally recognized expert Dr. Peter Gerhardt to present at the conference on Friday, February 8. Dr. Gerhardt is the Director of Education at the Upper School for the McCarton School in New York City. He has over 30 years of experience utilizing the principles of Applied Behavior Analysis in support of adolescents and adults with ASD in educational, employment, residential, and communitybased settings. Dr. Gerhardt has authored or co-authored articles and book chapters on the needs of adolescents and adults with Autism Spectrum Disorder and he has presented nationally and internationally on this topic. Dr. Gerhardt’s research interests include issues related to community integration and employment, development of adaptive behavior competencies, positive behavior supports with complex individuals, the use of technology to support community safety

and independence, and intensity of behavior analytic instruction with adolescents and adults. On Friday evening, attendees will have an opportunity to network with service providers, businesses, researchers, and organizations that support the autism community. Saturday’s program will include a series of shorter workshops, including Mobile Computer Technology for Individuals with Autism, with specific emphasis on iPad and Android applications, Autism and Humor, and personal insights by an individual on the autism spectrum. What people SAID about last year’s conference: u

“Possibly the best speakers I have ever encountered at any type of conference!” “A breath of fresh air for a parent to hear and identify with a parent who has faced similar challenges and emotions. Inspiring and informative. Very heartfelt and genuine.”

“Very useful information as a teacher and parent of a child with ASD.”

“Awesome insight from the other side of the spectrum. Very meaningful and impactful message.”

“Terrific information, well-presented. I learned a lot and hope to learn more at next year’s conference!”

Conference registration opens on September 1 via the ASNC website. There will be discounted rates for early and multi-day registrations. The Hilton Hotel is offering reduced conference rates if booked online through the ASNC website. Sponsorship and exhibitor opportunities are available. For more information, contact David Laxton at dlaxton@autismsociety-nc. org or call 800-442-2762, ext. 1111. u

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BOOKSTORE NEWS AND REVIEWS As part of ASNC’s office renovation last winter, the Bookstore moved upstairs to Suite 230 in our Main Office location at 505 Oberlin Road in Raleigh. We are now open Monday-Friday 9:00-2:00 and by appointment. All of our books are available online at www.autismbookstore.com. For personal assistance, please contact Dawn Eberwein at deberwein@autismsociety-nc. org or 919-865-5087. We are pleased to offer the following new books:

SOCIAL SKILLS Social Thinking at Work: Why Should I Care by Michelle Garcia Winner and Pamela Crooke Social Thinking at Work: Why Should I Care is a user-friendly guide to navigating the social intricacies involved with the workplace. The ability to socialize and get along with people that you work with is as important in building your career as being good at your job. This book is written especially for adults on the autism spectrum, but will be helpful to anyone who has ever experienced social challenges at work. (BSOC19, $22.00) Visual Techniques for Developing Social Skills: Activities and Lesson Plans for Teaching Children with High-Functioning Autism and Asperger’s Syndrome by Rebecca Moyes, M.Ed. Social skills instruction for K-8th grade children on the autism spectrum requires an emphasis on visuals, rather than language based instruction. This book contains easy to use, step by step lesson plans with a wealth of visual tools and aids for teaching children with high functioning autism and Asperger’s Syndrome. These K-8 lesson plans, featuring explicit IEP goals, can be incorporated into both General Education and Special Education classrooms and offer both individual and small group instruction. (BVIS06, $14.95)

A QUEST for Social Skills for Students with Autism or Asperger’s by JoEllen Cumpata and Susan Fell With inclusive education becoming the norm in schools nationwide, teachers often struggle to address students’ non-academic needs. Teachers need readyto-use lessons that won’t interfere with their curriculum. QUEST (Questioning, Understanding, and Exploring Social Skills and Pragmatic Language Together) is a social skills program created to help middle school students with ASD who struggle with pragmatic language and social skills. Developed by a school social worker and speech language pathologist, the program uses an intensive, proactive approach to teaching social skills, combining written instruction with games, activities, and student interaction. Six helpful units—School Survival Basics, Understanding and Managing Emotion, Communication Skills, Making Friends and Interacting with Peers, Personal Safety, and Vocational Readiness—can be implemented either chronologically or on their own. Evidencebased research supports the methods used, and students learnby-doing, through role-play and real-world experience. Parents are kept in the loop with email updates and evaluations. The book includes a CD of printable worksheets, letters, forms, and more. Topics include: Greetings, Paying Attention, Daily Hygiene, Asking for Help, Understanding Feelings, Getting Angry/Calming Down, Managing Stress, Starting a Conversation, Making and Keeping Friends, Gossip, Bullying, Teasing, Resisting Peer Pressure, Dating, Internet and E-mail Safety, and more. (BQUE01, $24.95)

PERSONAL ACCOUNTS Different...Not Less: Inspiring Stories by Temple Grandin Temple Grandin offers the world another great work, an inspiring and informative book that offers both hope and encouragement. This book includes the personal success stories of fourteen unique individuals who illustrate the extraordinary potential of those on the autism spectrum. One of Temple Grandin’s primary missions is

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to help people with autism, Asperger’s syndrome, and ADHD tap into their hidden abilities. These contributors were chosen to show how it can be done. Each individual tells their own story, in their own words, about their lives, relationships, and eventual careers. The contributors also share how they dealt with issues they confronted while growing up, such as bullying, making eye contact, and honing social skills. (BDIF03, $19.95) The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch Five years into his marriage, David and his wife Kristen learn that he has Asperger’s Syndrome. Over the next two years, David transforms himself from the world’s most trying husband to the husband who tries the hardest, the husband he’d always meant to be. Filled with humor and surprising wisdom, The Journal of Best Practices is a candid story of ruthless self-improvement, a unique window into living with an autism spectrum condition, and proof that a true heart can conquer all. (BJOU01, $25.00)

DIFFERENT TOPICS Apps for Autism: An Essential Guide to Over 200 Effective Apps for Improving Communication, Behavior by Lois Jean Brady, M.A., CCC-SLP Autism? There’s an app for that! Actually, there are more than 200 apps for autism, and this book will guide you through them so you can confidently utilize today’s technology to maximize your student’s success. Author Lois Jean Brady is a Speech Language Pathologist who wrote this book to educate parents, teachers, and other professionals about the breakthrough method she calls “iTherapy”—which is the use of Apple products (iPhone, iPad, iPod Touch) and various computer applications to meet students’ individual educational goals. The book’s premise is that all people on the autism spectrum can learn how to use technology in a way that is relevant to them. (BAPP02, $29.95) The PRT Pocket Guide by Robert L. Koegel, Ph.D., & Lynn Kern Koegel, Ph.D. What is Pivotal Response Treatment (PRT)? What’s the research behind it, what does it look like in practice, and what are some good examples of how to use it? Now one concise book gives professionals and parents all the basics of the widely used PRT—one of a select group of highly effective, evidencebased treatments for autism. A great resource for educators, behavior specialists, early interventionists, speech therapists, occupational therapists, and families, this reader-friendly pocket guide is the perfect introduction to PRT. (BPRT01, $19.95)

Hygiene and Related Behaviors for Children and Adolescents with Autism Spectrum and Related Disorders by Kelly Mahler, M.S., OTR/L This innovative curriculum teaches important hygiene skills and associated social understanding using a fun approach that targets the core characteristics and learning styles of children and adolescents on the autism spectrum. Each chapter includes a list of activities, a list of necessary materials, and a lesson plan. Topics focus on healthy and socially acceptable behaviors. (BHYG01, $21.95) Since We’re Friends by Celeste Shally. Illustrated by David Harrington. This very popular children’s book is once again available. This is the story of Matt, whose autism doesn’t stop him from having fun. Even when Matt struggles to navigate social situations, his friend is there to help him out. The boys enjoy playing sports, watching movies, reading books, and talking about animals. Working together, a best friend’s compassion and understanding turn Matt’s frustration into excitement. This touching story of friendship is the perfect guide for children and parents to better understand those with Autism Spectrum Disorders. (BSIN02, $12.95) Be sure to check out the following books which are not new releases, but are new offerings for our bookstore: The Social and Life Skills Menu: A Skill Building Workbook by Karra M. Barber During adolescence, social development and social status among peers is of crucial importance. For teenagers with Autism Spectrum Disorders (ASD), social interaction does not come naturally and often needs to be carefully learned. This workbook provides guided strategies to help those with ASD engage and connect with other people at home, school, work, social gatherings, and in the community. Packed with questionnaires, discussion logs, and hypothetical social scenarios, this workbook encourages students to think through their responses and consider the consequences of what they say and how others might react. By practicing these easy techniques and completing a series of everyday social tasks, students can improve self-awareness, increase self-confidence, and build on their daily life skills. (BSOC20, $29.99)

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My Anxious Mind: A Teen’s Guide to Managing Anxiety and Panic by Michael A. Tompkins, Ph.D. and Katherine A. Martinez, Psy.D. Illustrated by Michael Sloan. My Anxious Mind outlines a simple and proven plan to help you understand and deal with your anxiety and panic. It is full of simple-touse tools and strategies that easily fit into any teen’s busy routine. (BMYA01, $14.95) u

ASNC + SERVICES 22

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FROM FAMILY FUN DAYS TO OVERNIGHT CAMP By Lela Riddle

It has been a long journey for us to get to Camp Royall. When I first heard about it years ago, I thought, “There is no way I would trust my child for a whole week to people I don’t know. They don’t realize how hard it is to handle him out in the open, and how would they ever understand what he wants since he doesn’t talk?” After that, Camp Royall didn’t cross my mind except fleetingly, wishing that Brian could enjoy something like that one day. I never thought it would happen. Then early last spring, I saw that there were Family Fun Days and Family Camping Weekends at Camp Royall, and I thought, “Well, we can do this because we will be with Brian the entire time.” Needless to say, since then I have totally changed the way I see things as far as Camp Royall is concerned! Brian will be 14 in August. He is silly and loveable and likes to be tickled. He doesn’t have a lot of words and a lot of times it’s hard to understand some of the words he does have, but that is getting better constantly. He amazes us each and every day! He is one smart cookie; he just can’t always communicate what he is thinking. He doesn’t understand danger and safety is a huge concern for us. Last spring I signed us up for our first Family Fun Day and Family Camping Weekend and from the moment we arrived and were greeted by Lesley and Sara, I knew this place was something special. Even though the counselors were there to only facilitate the activities and not really ‘take care’ of the kids, it didn’t take me long to see how much they cared and how much they did ‘get it.’ At camp, Brian was in a place where it doesn’t matter that you’re different….as a matter of fact, they celebrate the differences of all the kids that go there. It is the most accepting place for my son that I’ve ever been. I didn’t have to run after him saying, “Brian, stop; Brian, leave the light switch alone; Brian, don’t play with that; Brian, you have to be quieter; Brian, stop spinning that wheel.” It was a very liberating feeling, lifting a weight off of our shoulders. The Family Fun Days and Family Camping Weekends have given us a place to go as a family, be totally accepted, and not have to ask for special accommodations. At Camp Royall, it is great just

letting our family be our family, without having to fit a square peg into a round hole. After going to a couple of Family Fun Days and Family Camping Weekends, I started to realize that, yes, these amazing people could take care of my son, and also provide all the experiences that kids usually have at camp in a safe environment. So, last fall, I decided to sign Brian up for his first Mini-Camp weekend. I was a nervous wreck because no one else besides us and his grandparents had ever kept Brian overnight. When we went to pick Brian up from Mini-Camp that first time, he just kept ‘talking’ about different things…the fan in the gym, the tire swing, roasting marshmallows, the scooter, camping, riding a horse. It was amazing to see how happy he was. And what was even more amazing was seeing the counselors with him. They are such positive and energetic people who accept him for who he is, and they do it with such obvious love and devotion. He was hugging them and giving Eskimo kisses to them just like he does with us! He has been to Mini-Camp a total of four times since last fall. These weekends have given Brian new independence to go somewhere without us, which at his age is something that he needs, no matter how hard it is for me to admit! Because of camp, Brian has been able to experience things that he normally wouldn’t get to, so he is talking about new things and relating his experiences to other parts of his life. It is very exciting for us to see him expand his horizons and learn new things. It has also given the family much needed time together to focus on the rest of the family members. Camp Royall is a magical place for our kids and our family. After his experiences at the Mini-Camp Weekends, I have absolutely no qualms about sending Brian to summer camp this year. We are all really looking forward to it. In fact, Brian, who does not have a lot of words, asks daily, “Camp Royall?” u Please visit www.camproyall.org for more information about year-round events, including Family Fun Days, Family Camping Weekends, Mini-Camp Weekends, and HFA Adult Retreat Weekends.

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NORTH CAROLINA’S MANAGED CARE TRANSITION WHAT IS IT? WHAT DO YOU NEED TO KNOW?

The state is changing the way that it provides care for individuals with Intellectual and Developmental Disabilities (I/DD) under its Medicaid Waiver program. This is a result of legislation passed in 2011 ordering the NC Department of Health and Human Services (DHHS) to restructure how care is managed and delivered to individuals with mental illness, I/DD, and substance abuse disorders via the waiver program. The process, which has experienced several delays, may be confusing for individuals who receive services, their families, and care providers. By the time you read this article, some parts of the state will have already made the transition. The entire state should complete the change by January 1, 2013. ASNC has been monitoring the transition since the legislation passed. We interviewed Kerri Erb (KE), Senior Director of Quality and Programs, to learn more about the process and summarize what families need to know, what you should be doing now, and where to find more information. Q: How is the state changing the Medicaid program and why is it necessary?

Q: Can you tell us more about the timeframe for the changeover? Which areas are transitioning first?

KE: At its simplest, the place that you take your child to determine eligibility and management of state services is being reduced from a network of 22 Local Management Entities (LMEs) to 11 Managed Care Organizations (MCOs). The state believes this change will increase local control and “will have greater flexibility to shape the service delivery system to ensure access to quality care that results in better consumer outcomes.” In other words, more local control should equal better access to higher quality care in your area. By consolidating the system, administrative cost savings will occur. A final goal is to make sure that the network of care includes only high quality and financially stable providers.

KE: The map (see illustration on page 25) outlines the times that each MCO will “come online.” As of this writing the Eastern Carolina Behavioral Health, Western Highlands Network, and the areas under Piedmont Behavioral Health (PBH) have made the switch. Others will change over by January 1, 2013.

Q: It sounds like much of this is driven by a desire to save money by cutting costs. Will the same positions exist in the new structure? What will be the difference? KE: The main difference is that there will not be Case Managers. Case Managers at LMEs will be replaced by Care Coordinators at MCOs. Individuals with CAP I/DD Case Managers will get a Care Coordinator assigned to them by their MCO. Care Coordinators will do some, but not all, of the current functions carried out by Case Managers, such as plan review and plan writing. There will also be a Community Guide service that will help to connect individuals with appropriate community resources. Availability of Community Guide services will vary according to location and MCO.

Q: Who does this apply to? What about individuals not currently being served or on a waiting list? KE: It applies to everyone. The dollars are allocated based on current “Medicaid Covered Lives” within the purview of the MCO. If your child is receiving other services or is on a waiting list, the MCOs will revise their waiting lists, which will now be called a “Registry of Unmet Needs.” If you are on the waiting list now, you need to make sure to contact your MCO to verify that your child is on their “Registry.” Q: Could someone be taken off a waiting list/registry? KE: That depends on the MCO and their funding. There will be town halls that families can attend to learn more and ask questions. Also, MCO websites (see the ASNC site for links) have lots of information. If your child/family member currently receives services or is on a waiting list, it is critically important for you to contact your MCO to make sure that you understand how the transition will impact your child’s services or waiting list status.

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Q: What does a family who has not sought services for their child need to know or do?

Q: Is the name of the waiver changing as well? Is there a change in what the waiver provides?

KE: It should be a similar process to what happens now. MCOs have information on their websites and are available by phone to explain what to do if you need services. It is important for families to read and understand the services that are potentially available to them and to ask questions.

KE: The CAP I/DD waiver will go away as LMEs switch over to MCOs. Waiver services at MCOs will be provided through the Innovations Waiver. Services are supposed to “crosswalk” – or shift seamlessly - from the CAP I/DD waiver to Innovations, meaning your child should receive a similar service during the initial transition (see our article on Medicaid 101 to learn more about the waivers).

Q: Is there a downside to this transition? KE: In theory, there could be. The same amount of money will be available, but there are additional people who need services. Some people could see changes or reductions in services in an effort to meet budget, but more people may receive services. There are incentives for the MCOs to achieve cost savings. If they do reach those goals, additional funds could be allocated to meet specific local service needs. Another change is that the network of care becomes a closed provider network. This means that your MCO may reduce the number of agencies that provide services in their area. This will allow MCOs to set high standards for providers to meet the needs of their region. The MCOs will control the type and quality of providers within their network. Q: Do families still have the ability to pick the provider of care for their child? Will there still be providers to chose from who specialize in autism? KE: Families will still pick their provider, but they may have a smaller list of options. It’s important that families share their need for providers who understand autism with their MCO and Care Coordinator.

Q: So, the overall goal is high-quality care, brought about by increased efficiencies that will save money that can then go back into providing care. And providers will be motivated to provide quality care so that they will continue to be selected by the MCO. What are people most concerned about? KE: The main concern is the timeline: there are a lot of things happening in a short window of time. Consistency among MCOs and how they communicate with families, as well as the training of Care Coordinators and other staff, are additional issues that people are concerned about. u The Autism Society of North Carolina provides workshops and seminars on the transition to managed care via our Chapter network and by request. If you are interested in finding out more about workshops in your area, please visit the Autism Society of North Carolina’s online calendar of events or contact your local Parent Advocate/Trainer. Please also refer to our website (http://www.autismsociety-nc.org) under the Services > Direct Care Services tab for additional information and links.

Proposed Local Management Entity - Managed Care Organizations (LME-MCOs) and their Member Counties on January 1, 2013 map updated on July 16, 2012 by ASNC

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SERVICES 101:

WHAT YOU NEED TO KNOW ABOUT MEDICAID AND CAP

Knowing what services are available from various sources is an important step in advocating for your child and receiving needed assistance. In this article, we will outline and explain what supports are available through the LME/MCO organizations and how to apply for those services.

Q: If I am a parent of a child diagnosed with an Autism Spectrum Disorder, what services are available outside of the school system and what can I apply for? A: Within the LME/MCO managed services, the CAP/IDD (through the LME) or Innovations Waiver (through the MCO) will be the primary source of ongoing support services. Early intervention services and specialized therapies, which include occupational therapy, speech therapy, and physical therapy, may also be available through these waivers and local county government funding. Some families may also be able to receive services through their insurance company or pay privately for services.

Q: What support does the CAP/IDD or Innovations Waiver provide? A: Each waiver offers a variety of 1:1 services. “Habilitative” services under the waiver include respite, personal care, residential services, and training for community-based life skills, independent living skills, and employment. “Specialty” services such as Individuals’ Caregiver Training and Education, Behavioral or Specialty Consultation, and crisis services are also provided via the waiver. “Specialty” services can provide 2:1 staffing and behavioral and psychological consultation in the home, as well as crisis respite outside the home. (Please note that crisis care options are limited and based on availability.) Another provision of the waiver includes necessary supplies or modifications to the home for those who qualify.

Q: If my child does not have services, how do I apply? A: The first step in the process is to call your LME/MCO and begin the process, which involves a family interview as well as a psychological evaluation and assessment of the child’s needs. You may be asked to provide documentation from your pediatrician and other providers. Importantly, another item that is examined and considered when determining a child’s eligibility is the child’s income. Family income is not considered for eligibility. Your child’s income is the only financial factor for Waiver Services.

Q: So, family income level does not matter for Waiver Services? A: The LME/MCO will look at all assets (life insurance policies, savings accounts) in the child’s name only. This includes assets that relatives may have set up for a child’s care such as a trust, bank account, etc.

Q: How long does it take to learn if my child will receive services? A: It varies. Some families report learning the decision within a month, some report a longer interval.

Q: What if it is determined that my child does not qualify? A: If you do not qualify, or if CAP services are not available due to lack of funding, your child will be placed on the waiting list (LME) or Registry of Unmet Needs (MCO). At that point, the agency may offer you services through IPRS (services that are similar in scope to Waiver Services, but not as extensive). IPRS services are funded through State and County funds and are subject to availability.

Q: Where does funding for CAP/IDD or the Innovations Waiver Services come from? A: Waiver program funding comes from the Federal and State (about a $2 to $1 ratio of Federal to State dollars).

Q: If you are denied CAP/IDD or Innovations services and there are no County or State funds available, what options does a family have? A: There is an appeal process and the MCO/LME should supply information about how to appeal. ASNC Parent Advocates can also assist parents through the application and appeals process. It is always a good idea to contact the LME/MCO when your family situation changes. There is not necessarily an appeal process for IPRS (state funded) services. u

For more information about applying for services please contact your regional ASNC Parent Advocate or visit your local MCO/LME website.

www.autismsociety-nc.org

ASNC + YOUR COMMUNITY www.autismsociety-nc.org

FUNDRAISERS AND EVENTS 2nd Annual Coastal NC Run/Walk for Autism

Run/Walk Events

On Saturday, April 21, over 570 supporters, 30 teams, and 70 volunteers joined the Autism Society of North Carolina and GHA Autism Supports for the second annual Coastal NC Run/Walk for Autism. This event has raised over $40,000 to support individuals and families affected by autism in the coastal region of North Carolina.

Several ASNC Chapters held successful run/walk events in their local communities last spring.

The Coastal Run/Walk for Autism was part of World Autism Awareness Weekend, which included a variety of family-friendly activities, including a Family Day in the Park and water sports hosted by Surfers Healing. This event would not have been possible without our sponsors. Please support these businesses and thank them for their support of the Autism Society of North Carolina. Visionary Sponsor: Halley White, DDS, MPH Champion Sponsor: Mayfaire Town Center • PPD • R.A. Jeffreys • Try Sports Advocate Sponsor: Allstate – Randy Gibson • Atlantic Corporation Bonner Law Firm, P.C. • Cape Fear Camera Club Coastal Kids Therapy • Jim & Lesley Hively OT Solutions • Towne Tap & Grill Friend Sponsor: Coastal Behavioral Science HomeCare Management Corporation Kenson Kids, Inc. • The Law Office of Richard Poole Lovey’s Natural Foods & Cafe • Panera Bread REEDS Jewelers • Starbucks Coffee Think Promotional Group Wilmington Dermatology Center

The Crystal Coast Run/Walk, on April 14 in Beaufort, welcomed 150 participants and raised $6,000. After the race, the Chapter hosted a cookout at a local park with a bounce house, a dunking booth, and horseback rides. Several therapy providers were on hand to discuss their services with families. The funds raised will be used to pay for childcare at the Chapter meetings, music therapy, and social programs for the children. On April 21, the Cabarrus County Chapter proudly hosted the 2nd Annual 5K Puzzle Run and 1-Mile Fun Run. Over 150 runners and walkers joined the fun. To date, the event has raised almost $9,000. All of the proceeds from the event benefit the support, educational, and outreach efforts of the Chapter. The Surry County Chapter sponsored their first annual walk on April 21. Over 500 walkers raised over $12,500 to support the autism community in the Surry area. The Chapter was overwhelmed with the community support they received from schools, provider agencies, churches, civic groups, emergency responders, and area businesses. On April 28, the Pitt County Chapter sponsored the 4th Annual Eastern Run/Walk for Autism. Over 500 participants and 70 volunteers braved the unseasonably cool temperatures to raise awareness and funds for local families affected by autism. The event raised over $30,000, which will be allocated to local initiatives such as Camp Royall scholarships for Pitt County residents, the Greenville TEACCH Summer Social Club, and the ECU Pirate Speech Camp.

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FUNDRAISERS AND EVENTS Wells Fargo Zipping for Autism Raises $31,000 for Western North Carolina The inaugural Wells Fargo Zipping for Autism event was held on Sunday, June 3, at Asheville Zipline Canopy Adventures. Each team of up to ten people enjoyed a two-hour zipline experience in return for raising at least $790- the usual cost for ten people to zipline there. Created by Jeff and Sheena Greiner, owners of Asheville Zipline Canopy Adventures, Zipping for Autism raised awareness and greatly needed funds for advocacy and respite care for families in western NC. 100% of the proceeds – more than $31,000- will remain in western North Carolina to support ASNC’s programs and services in the area. Businesses, church groups, schools, and families formed twentyfour teams that enjoyed the zipline experience. Team members from two Wells Fargo teams were in fierce but friendly competition against one another in an effort to best the other in raising funds. Diamond Brand, John Laughter Jewelry, and Asheville Zipline Canopy Adventures donated prizes for best team costume and for top individual and team fundraisers. Next year’s event is scheduled for Sunday, June 2, so make plans now to form a team and join in the fun. This event truly elevates children with autism to new heights!

Recent Fundraisers Many thanks to the local businesses and organizations that support our mission by hosting fundraisers to benefit ASNC. If you are interested in hosting a special event, please contact Heather Hargrave at hhargrave@autismsociety-nc.org or 919-865-5057. Appalachian State University – The Student Music Therapy Association hosted a benefit concert on April 28. Many thanks to Hannah Lingafelt and Andrea Waters for their organization of this event. The Beard and Moustache Club of North Carolina hosted a Beard & Moustache Competition on March 10 in Greensboro to benefit services in the Triad region. Michael Duez helped organize this event. Chesterbrook Academy recently partnered with the Durham Bulls for Chesterbrook Night on April 29. Ticket sale proceeds will fund summer scholarships for Camp Royall. Thanks to Cheri Walker for organizing this event and to all the families and friends who purchased tickets.

The Full Throttle Car Club held an all-Ford car show at Dunn Benson Ford on May 5. Thank you to Jay Sloop and his family and Dunn Benson Ford for their continued support of ASNC. TEK Systems in Greensboro held a 5K Run/Walk at Bur-Mill Park on March 3 to benefit the services and programs in the Triad region. Thanks to Daniel Bettis for putting this event together.

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SAVETHEDATE Camp Royall Classic Golf Tournament a Big Success!

GREENSBORO

www.greensbororunwalkforautism.com

The first annual Camp Royall Classic Golf Tournament was held on May 7 at The Preserve at Jordan Lake golf course. Golfers of all ages and abilities enjoyed the chance to play on this championship course and compete for great prizes. Ronald McDonald even made an appearance for the day!

WNC

The tournament proceeds, which totaled over $33,000, supported scholarships to Camp Royall for summer 2012.

RUN/WALK FOR AUTISM UNC-GREENSBORO | SEPTEMBER 22

RUN/WALK FOR AUTISM UNC-ASHEVILLE | SEPTEMBER 29 www.wncrunwalkforautism.com

TRIANGLE

RUN/WALK FOR AUTISM DOWNTOWN RALEIGH | OCTOBER 13 www.trianglerunwalkforautism.com

To register, join a team, form a team, donate, or volunteer, please visit the event website. If you have questions, please contact Heather Hargrave at 919-865-5057 or hhargrave@autismsociety-nc.org.

THANK YOU FOR YOUR SUPPORT OF OUR RACES; WE HOPE YOU CAN JOIN US! 30

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Many thanks to Pat, Paul, Rex and Kelli Willoughby and to the local McDonald’s franchise owners for their support and hard work to make this tournament possible. Be sure to check out the tray liners in Triangle and Piedmont area McDonald’s restaurants to see photos from the event! Thank you to all who participated in this event and to our McDonald’s partners. Be on the lookout for this event next spring!

Camp Royall Scholarships The Autism Society of North Carolina has been offering summer camp for over 40 years for

individuals with autism of all ages. Camp Royall is the largest and oldest camp exclusively for individuals with autism in the United States. We are proud to host such a highly acclaimed and unique program here in North Carolina. Due to the generosity of the following donors, we raised over $150,000 in camp scholarships for summer 2012. We hope you will consider joining these donors in helping to provide a life-changing experience for a camper with autism. Please contact Kay Walker at kwalker@autismsociety-nc.org if you are interested in donating to camp or if you have ideas for increasing camp fundraising. u

$25,000+ Donor Level

Mary Louise and John Burress BB&T Charitable Foundation

$10,000-$24,999 Donor Level Carolina Brewmasters Oktoberfest The Elizabeth A. Hudspeth Endowment Fund of Cumberland Community Foundation, Inc. Triangle Community Foundation “Send a Kid to Camp” Ronald McDonald House Charities of North Carolina

$5,000-$9,999 Donor Level The Cemala Foundation Scott Weiner and Kim Harris Pat and Paul Willoughby/ PPR Foods

$2,500-$4,999 Donor Level

ASNC Pitt County Chapter ASNC Wake County Chapter The Charlotte Observer/Partners in Out of School Time Crabby Hatters Golden State Foods Foundation Pfizer, Inc. The Women of Fearrington, Inc.

$1,000-$2,499 Donor Level

Allstate Foundation ASNC Jackson/Swain/Qualla Boundary Chapter ASNC Vance/Warren Chapter Caison Enterprises, Inc./ McDonald’s Carolina Hurricanes Booster Club, Inc. Janet and James Cozart Helen L DeSoto Scholarship Fund The Elder Family Foundation Trust Leslie and Michael Graves Kathleen Krumpter Manning Enterprises Ltd./ McDonald’s The Mary Margaret McLeod Fund for Deserving Children in Lee County of Triangle Community Foundation Mercedes Benz of Cary Chris Norton

The Penny Fund Panduit, Inc. Premiere Communication & Consulting, Inc. RTI International RTP Signs & Graphics S&J Foods, Inc. Think! Promotional Group Top Shelf Containers, LLC USA Flooring Walker Auto Stores Young Agents Committee of NC

$500-$999 Donor Level

ASNC Johnston County Chapter ASNC Onslow County Chapter ASNC Orange/Chatham County Chapter Commercial Site Design Floride Carpenter Allison and Douglas Eisner Deborah and Rene Gonzales Kohl’s Corporation Dolores McGovern Jeanne McGovern and Michael Schwenk Brenda Penland Julia Price Scott Sokal Media Group, Inc. Mildred and Dillard Teer Taylor Freezer Sales Company of Virginia Raleigh Kiwanis Foundation, Inc. Susan A. ReCorr Charitable Fund of Triangle Community Foundation US Foods Wells Fargo Social Responsibility Group

$250-$499 Donor Level

ASNC Alamance County Chapter BB&T Joan Barlow Cantara, LLC/McDonald’s Eugene Davis Mr. and Mrs. Edmonds Emmett Aldredge Machine & Welding Supply Company Susanne Harris Joseph Hodskins Barbara and Geoff Imboden Janice and Kevin Kidd Eileen and Daniel Koehler Michael Mahoney McDonald’s Corporation

McDonald’s CC MAC Corp. McEntire Produce Maureen and Rob Morrell Patricia and Howard Oelrich Lynne Romyn Smith Breeden Associates, Inc. State Farm Insurance Company Sandra and William Steele Joshua Steelman Tracey Stidham Insurance Agency, Inc. Phillip Wallwork Kristy and Andrew White

$100 - $249 Donor Level

Autism Outreach David Abels Marjorie Angell JoAnna Massoth and Dan Barnes Tina and Bill Baxter Jamezetta and Edward Bedford Barbara and Joel Bentley Jim Brooks Louise and Robert Burkey Amy and Leonard Bush Jane and Eston Campbell Carolina Orthopedic and Physical Therapy, Inc. Rebecca Coffee Marlene and Orval Conner Virginia and Charles Craft Michelle Davis Gabriel Dichter Katie and David Driggs Sheila Fairchild Kristen and Zachary Feldman Foelgner Ronz & Straw, PA Elizabeth Fouts The Franklin Hotel Cynthia Hoyt and Hannah Fouts Grover Godwin Peggy Graham Elaine and Chester Gurski Jay Hall

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Cathy and William Heitman George Holloway Carin and Paul Huegel Mary A. Iffert Jackson County Psychological Services, PA Suzanne and Daryl Jones Regina and William Kaiser KTL McDonald’s LLC Lucy and Jim Kurz Larry High Insurance Lorraine LaPointe Barbara and Pete Louis Faye and Steve Marron Carol A. Martin Sue and Jan Martin Sharon and Randy Martin Gertrude and Wesley McDougald Gayle and Wayne Meredith Lyda and Rich Mihalyi Carol and Chuck Moore Rollie Olin Emily Onorato and Maryellen Smith Fran Pearson Mr. and Mrs. John Proudfit Rices Glass Company Maryanne and Julian Rosenman Sarah and Leonard Safrit Yvonne M. Sagers Maureen and William B. Scott Mitchell Smith Susan and Derek Smith Catherine and Frederic Staley Ann and Steve Timberlake Jan Zeller and John Townson Linda Varblow and James Holloway Sallie and Harry Walker Walkers Shortbread, Inc. Patricia and Clive Winney Mary and Richard Wolf Claudia Yalden

Volunteer spotlight: ADDY MILLER

Twelve year-old actress Addy Miller has teamed up with the Autism Society of North Carolina to help raise funds and awareness. Addy, who was cast in “The Walking Dead” and played a young Dakota Fanning in “The Secret Life of Bees,” has raised over $1,200. In April of 2011, Addy’s brother, Drew, was diagnosed with autism. At the time, Addy was touring with fellow “The Walking Dead” cast members at comic and horror conventions. Addy decided she was going to help her brother and kids like him by donating a portion of her autograph money to autism. For about a year, she quietly put the money aside. “Watching my brother, Drew, (and now my baby brother, Rylan), go through his daily struggles to communicate and understand the world around him, I felt lost because I didn’t know how to help him,” says Addy. “Then I found out what was wrong with him was called autism. He began receiving more therapy and I started to notice him improving. It was then I realized I wanted to give some of my money to help kids with autism. My mom and I looked at several autism organizations, but chose ASNC because we live in North Carolina and it could help Drew directly.” At the meeting where they first presented ASNC with the money she had collected, Addy asked what else she could do to help, since she wanted to do more than just give money. Addy’s Mom, Jaime, says, “During this meeting, Addy found out about Camp Royall. Her face lit up, and it was decided that

the donations would fund scholarships for children to attend camp. Addy then asked if she could help at the camp.” Addy is too young to become an actual camp counselor, but ASNC agreed to let her attend Counselor Training Week and learn alongside the older counselors. This summer, she will be working Week 3 and Week 5 as a volunteer assistant counselor at Camp Royall. “At first my goal was to just help spread awareness and help raise money for ASNC, but now that I have gotten involved with Camp Royall, my goals have totally changed,” says Addy. “I want to give more of my time, too. Meeting the kids during counselor camp, it really touched me and I could see the difference camp made to them and how happy they are while they are there. This is one place they feel safe and normal, and no one looks at them weird.” Addy has added ASNC to her table at conventions, including a cash drop box, posters, and flyers. She is an active advocate for autism, helping spread awareness, raising money, and giving her time to a cause that is close to her heart. To learn more about Addy and upcoming appearances, visit her Facebook fan page at www.facebook.com/AddyMillerFanPage, and check out her IMDb at www.imdb.me/addymiller. u

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TAKE ME OUT TO THE BALLGAME! MINOR LEAGUE TEAMS PROMOTE AUTISM AWARENESS

North Carolina is home to several Minor League Baseball teams, offering entertainment and a relaxing way for families to spend a summer’s evening. For several years, ASNC has been honored to partner with the Durham Bulls for an annual Autism Awareness Night. In recent years, the Burlington Royals, the Charlotte Knights, and WinstonSalem Dash have also hosted autism events. This July, the Asheville Tourists held their inaugural Autism Awareness game. Awareness games provide an opportunity to connect fans with the Autism Society of North Carolina and its network of local chapters. Fans may not be personally impacted by autism, but with a prevalence rate of 1 in 88 children nationally, and 1 in 70 in North Carolina, it is likely that they will know someone affected by autism. These games allow ASNC to provide information to fans and help connect families with support services and other families affected

by autism. Many teams also raise money for the cause by auctioning jerseys or donating a percentage of ticket or merchandise sales. 2012 Game Schedule u u u u u

Winston-Salem Dash – April 15 Charlotte Knights – July 14 Asheville Tourists – July 22 Durham Bulls – August 4 Burlington Royals – August 25 This event includes the OT Sports 5K, which benefits ASNC.

The teams at all of these events work to accommodate the sensory needs of their fans on Autism Awareness Night by decreasing the volume for announcements and music. Thanks to all the baseball teams for their support of the autism community. We hope to see you at the ballpark! u

Spread Awareness Every Day with an ASNC License Plate A few years ago, the NC General Assembly approved a special license plate to promote autism awareness and to help connect individuals on the autism spectrum and those who care about them with the Autism Society of North Carolina.

For more information on the Autism Society of North Carolina license plate, visit the NC Division of Motor Vehicles at http://bit.ly/ASNCdmv. u

By having a permanent presence on NC roads, the ASNC license plate ensures that drivers and passengers have the opportunity to become aware of the organization and its resource network. The plate also provides needed funds for statewide autism awareness initiatives. Funds come from the additional fee attached to each plate sold, $10 of which is returned to ASNC. Since the program began, over 1,000 people have purchased the Autism Society of North Carolina license plate. Please consider purchasing yours the next time you renew your registration.

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HONORARIUMS Murray Abels David Abels Anthony Agnelli Paul Savarese Rob Agnelli Paul Savarese Amber Amerson Kimberly and William Amerson Austin Arahill James Arahill Dwayne Ballen iCan House Services Gabriel Reed Banks Sherry Banks Daniel and Marilyn Moncol Sharen V. Barfield Sharen Hart Mark Baxter Tina and Bill Baxter Emilie Grace Beacham Anne and Lang Anderson Derek Bentley Barbara and Joel Bentley Brittany Bianchi Gloria Bianchi Harrison Bischof Diane and Paul Bischler David Blubaugh Paul Blubaugh Kerri Brady Mary and Charles Obermeyer Brittany Jean, Kenneth, and Phil Oakley Remington Brown Jacqueline Talley Sally Buckner Sally and Robert Buckner Ward Cameron Hayward Cameron Camp Royall Chris Norton Camp Royall Campers Priscilla Morris Noah Canaday Sally Canaday Cameron Todd Carlyle Betty Jean Carlyle Holly and Ricky Carlyle David Christofel Miriam Creech

Betsy Clark John Martini John Lee Coffee III Rebecca Coffee Jeannie and Gordon Coleman Tom Mates Beck Collier Katherine Burgamy Mary and Robert Davis Michael Downing Adaire and Weems Pennington Lisa Roberts Monica and Craig Sims Lynn and Craig Smith Holmes Smoot Sidney Collins Marlene and Joseph Diorio Blake Culberson Kendra and Travis Culberson Grant Culberson Kendra and Travis Culberson Thatcher Davis Christi Sonbert Cipa Dichter Gabriel Dichter Kathy Dolbee James Dunn Stephen G. Dougherty Christine and John Dougherty Michael Eason Anne and Bobby Eason Kerri Erb Linda and Michael Bryant Floyd Knight School Angela and Jason Davenport Anthony Fogarty Joan Fogarty Justin Forbes Donna Marie Miller Natalia E. Fouts Cynthia Hoyt and Hannah Fouts Louise Dickerson Gavigan Marjorie Pearsall GHA Autism Supports Elaine and Chester Gurski Gracie Gibbs Peggy and Richard Freund Anthony J. Giordano Concetta and Joseph Giordano Christopher Goggin Christine and Christopher Goggin Courtney Graham Sarah Khanjian

The Autism Society of North Carolina staff would like to extend our heartfelt thanks to all donors. While we appreciate every single gift, in the interest of space and printing costs, we have had to limit the donation list to Honorarium/Memoriam gifts. Thank you all for your tremendous support. The following list reflects donations received on or between January 1, 2012 and June 30, 2012. Please contact Beverly Gill if you have any questions or corrections at 800-442-2762, ext. 1105, or send an email to bgill@autismsociety-nc.org.

Miles Hancox Shelley and Matthew Hancox Heath Hassell Amy Hassell Jenna Hilgoe Ellen Hilgoe Lesley and Jim Hively Elizabeth Donald Joey Holloway Linda Varblow and James Holloway Robert Horne Marie Horne Iredell County students Coddle Creek Elementary #318 Matthew Jaluvka Debra and Gary Jaluvka Jim Johnsen Nan and Ray Johnsen Elizabeth Jones Cynthia Alleman Miles Jones Suzanne and Daryl Jones Jimmy A. Joy Barbara and Robert Campbell Adam Joyner Richard Warner Andrew Julian Brenda and Philip Julian James Brodie Jumbercotta Heidi and Andrew Jumbercotta Curran Justice Monique Justice Fran Pearson Christopher Kalinowski Kathleen and Donald Kalinowski Jacob Kawalski Vicente Perez Keagan Kelly Melissa and Terrence Kelly Ryan Kiefer Carol Kiefer Jackson Koehler Kristi Benedict Max Kuller Susan and Jeffrey Kuller Brody LaLomia Lindsay LaLomia Bailey Lassiter Angela Lassiter Dorothy “Dot” Lessey Katrina Woodcock Luke Long Brian Long Kenneth Aaron Martin Debbie and Jeff Martin Luke Mayer Rita Hayes Zachary and Gabrielle McAfee Anna and Charles McAfee Roderick McDougald Gertrude and Wesley McDougald Liam McFarland Susan and J.R. McFarland Avery McKeller Elizabeth and Charles McKeller Sam McOwen Coburn Beck

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Sallie and Stephen McOwen Susan and Donald Beck Chris Mentas Leonard Fumi Deborah and Dwight Meredith Gayle and Wayne Meredith Jack Mies Anonymous Eric Mihalyi Blake and Bret Ellis Lyda and Rich Mihalyi Mildred and Dillard Teer Della and Piet Mol Amy and Vance Fowler Riley Monteath Stephanie Monteath Bev Moore Susan and John Mickey Justin Morrell Emily Ballance David Moser Ann and Jerry Moser Ethan Mull Frances and Richard Mull The Nester Family Catrina and Melton Alexander Sean W. Nice Shannon and Graham Nice Jonathon Noble Emory Taylor Noble Acres Hunting Club Oasis NC Stephanie Monteath Christopher Olivencia Doreen and Will Olivencia Steven Olivencia Doreen and Will Olivencia Alexander Pantlin Gloria Furman Jacob Perry Kelly and Kevin Perry Josh Perry Muriel Penny Daniel Phillippi Scarlett Parker Margaret and Paul Phillippi Mary and Richard Wolf Addison Plotkowski Justin Hill Caleb Plotkowski Justin Hill Nancy Popkin Nichol Merritt Melissa Travers Declan Powell Heidi and Kevin Brundage Jacqueline Powell Robin Stevenson Andrew Raxter Linda and Henry Raxter Jesse “Trey” Rogers Nancy Porter Jesse Romanos Jackie and Eric Romanos Chloe Sagers Yvonne Sagers

David Sasser Jean and Henry Sasser Kassidy Smith Dorothy O’Connor Isaac and Samuel Soderstrom Lori Colt The Soots Family Catrina and Melton Alexander Steve Sowers Time Warner Cable Noah Sutton Susan and Louis Peele Todd Sutton Randy Joyner Miles Targosz Ellen Nielsen Laura Ashley Taylor Barbara Carter Andrea Totaro Rosemarie and Joe Totaro Bobby Turner III Creekside Carriers 27608 and 27605 Paul Viersen Greta and Michael Jones Melissa and Bond Warner Ronald Adams Kay Walker Anne Dahle Ryan Webb Marian Carson Doris and Charles Gaunt Judge and Mrs. William Wellons Susan and Donald Beck Patrick Yalden Claudia Yalden

MEMORIALS Andrew Allen Clarissa and John Allen Mary McGovern Bradley Dolores and Christine McGovern James P. Branch Shirley and Kline Scarborough Katie and Lewis Wills James O. Bunn Joyce Lipscomb Canady The School Lunch Bunch Betsy and Frank Knott Women’s Bible Class of Everett Chapel Edward Burns Rosemarie and Joe Totaro Lynda Caudill Shanan and Edgar Mills Lois Thompson Coates Deborah and John Bost Patterson Pope Clover School District #2 John Lee Coffee, Jr. Rebecca Coffee Zachary Cook Freda C. Sanders Gerald Cooper Hillandale Elementary School Desi and Thomas Hammock Jennifer Scutari Daniel Hibbitts Julia Price Scott

Barbara “Bobbie” Higginbotham Sylvia and Homer Hobgood Mary Landers Ida Margaret Copeland Hobbs Kathleen Allen Tina and Charles Broome Frances and F.P. Chambers Wanda and Charles Forrest Vivian and Eugene Jordan Dorothy and Leo Lavoie Wanda and Elton Morris Lisa and David Sampson Amy Sheck Ballards Bridge Church/Rasalind Harrell Group Newport News Shipyard/Material Ordering and Inventory Control Richard Lemons Johnson Peggy Lemons Herbert W. Lambert Anne Dahle Martha J. Lloyd Kitty Lassiter Josephine Wilson McCullen Jane and Richard Thomas John J. McGovern Patricia and Donald Gebo Dolores McGovern Betsy Douglass Patrice and Thomas Galvin Elinor Mounce Randy Mounce Mark Russell Newcomb Jacqueline and Ronald May Shirley Taylor Noble Raymond Bolt Ollen Clark Teresa and Calvin Decker Donetta and Allen Frith Janice Hendrix Noble Acres Hunting Club Emory Taylor Annie Mae Pemberton Town of Rolesville Clayton Persinger Mary and Bob Redeker Terry Yohe and Bob Redeker Tamra and Robert Coopman Jan and Damon Wallis Liz and Chadd Lowderman Elaine Powell Robin Stevenson Phillis Powell Creekside Carriers 27608 and 27605 Arlene Price Randall Hinds Jackie Ransdell Carol and Chuck Moore Joan R. Regan Clare Hall Our Lady of Grace Catholic School/ 8th Grade Class Joseph A. Roberto John Betti Kelly and Kirk Cleveland Duane Galletta Omaya Haddad

Martha Hayes Bang and Davy Ko Kathy and Peter Ko Jeanne Mansolillo Charles Mantione Margaret and Dennis Oleszczuk Judith and Russell Smith Heather and Lance Teegarden Andrea and James Townsend Maria Sagliocca Rosemarie and Joe Totaro Billy Scott Maureen and William Scott June Shanaberger Susan Slocum William Porter Sing, Jr. Mary Lida Alexander Nona and Jerry Alvia Sue Bethea Alma Biagini Linda and Michael Black Becky and Floyd Chandler Linda and Tom Clayton Judy and David Clegg Diann and Vance Cockerham Sally Combs Janet and Jim Duncan Mary Early Ethel Elvington Molly and Douglas Furman Anne and Henry Gilliam Sue Grier William Harris Merle and Don Huffman Lucille Jacobs Frankie and Charlie Jamerson Helen Joerger Anne Lawson Stuti Majmudar Donna McCaskill Cynthia and Derry McCormick Cherry and William Mitchell Carol and Chuck Moore Ms. Emily C. Onorato and Ms. Maryellen Smith Margaret Parham Lillian and James Poole Virginia Rock Helen and Dick Rose Ramona Sauls Karen Scaife Deborah and Daniel Shelley Tana Uriarte Jean Wilson Lillian Youngblood Dianne and Edwin Zagora Todd Zagora Sally and Robert Buckner Martha Smith Stickell Nancy Bomar Susan Brown Nancy and Edward Foster Meta and Albert Laabs Jane and Herb Parks Mr. and Mrs. Fred Ruth Florence Seger

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Donald Leroy “Lee” Viersen, Jr. Judy and Robert Powell Greta and Michael Jones Charles C. Wallace Lana and Lacy Baynes Betty Carter Brian MacKenzie Robert Pember Bruce and David Shook Marie Thompson Tara Spillane Weikel Arthur Bartholomay Sarah and Challen Bonar Amy Choffin Keith Coltrain Judith Crouch Patricia Dumser Lavinia Gordy Barbara and Jeff Harvey Brooke Harwood Carol and Keith Hegedus Donna Hight Laura Lamkin Mary Anne and Ronald Lamkin Marilyn and John Lauritzen Pete Little Jane and Norman Miller Newgate Simms Jennifer Pichon Presbyterian Orthopaedic Hospital Beth Roberts Michael Rosser Cheryl and Frank Rotatori Vicki and Bill Russell Elizabeth Smigel Kathryne and Aubrey Strange Ross Weikel Scott Weikel Judy Anderson Wood Jennifer Beach Luke Bellamy Courtney and Garrett Byler Meaghan and Steve Chilton Velma and Andrew DePowell Sarah Dickens Erin and Mike Ewasyshyn Brad Garner Mary Ann Lambert Karen Liles Amanda and Adam McLaughlin Jay Mullen Temple Baptist Church/Faith Sunday School Class Cathyrn Reavis Tyler Smith Gregory Wood Marlys and Ron Wood BB&T OnLine & Mobile Channel Let’s Talk Speech & Language Services, Inc. Janet Lynn Ostrom Wright Linda and Waylon Cockrell Barbara Crane Lawrence Sontag Rosemarie Webb Faulkner/Haynes & Associates, Inc.

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