Spectrum the
Volume 31, No. 1 • issn 1044-1921 • WINTER 2015
Annual Conference: Lifelong Learning New Program: LifeLong Interventions Supported Employment Brings Fulfillment
Mission Statement 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.
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.
The Spectrum
Table of Contents Features:
Annual Conference: Lifelong Learning................................. 4-5 Introducing LifeLong Interventions..................................... 6-7 Supported Employment Brings Fulfillment..................... 10-11 Social Skills and Teachable Moments.............................. 12-13 Help on Residential Options................................................. 14 Facing Bullying Together....................................................... 15 A “Not So Mini” Mini-Camp................................................. 19 World Autism Awareness & Acceptance Day....................... 21
The Spectrum (ISSN 1044-1921) is published in January and August by the Autism Society of North Carolina, Inc.© 2015. All rights reserved. Viewpoints expressed are not necessarily those of the Autism Society of North Carolina, Inc. or its Board of Directors.
How Faith Communities Can Help........................................ 24
Editor: Amy Seeley Graphic Designer: Erika Chapman
Message from the CEO........................................................... 3
Careers Would you like to work for the Autism Society of North Carolina? ASNC is a direct-care provider throughout the state with offices in Asheville, Charlotte, Fayetteville, Greensboro, Greenville, and Raleigh. We are always looking for good candidates who are passionate about helping individuals on the autism spectrum and their families. A variety of part- and full-time positions are available! Please visit http://bit.ly/ASNCcareers to learn more about current ASNC career opportunities. We appreciate referrals; please help us recruit the best talent by sharing the above link.
505 Oberlin Road, Suite 230 • Raleigh, NC 27605-1345 919-743-0204 • 800-442-2762 • Fax: 919-743-0208
www.autismsociety-nc.org
Also in this issue: Services Updates................................................................. 8-9 Public Policy Update........................................................ 16-17 Camp Royall Upcoming Events............................................. 18 Bookstore: Expert Picks........................................................ 20 Chapters & Support Groups............................................ 22-23 Fall Run/Walks for Autism............................................... 25-27 Thanking Our Supporters................................................ 28-29 Donations........................................................................ 30-31
ASNC is also supported by:
Message from the CEO
Happy New Year! It’s hard to believe how quickly time goes by when there are so many things happening within our community. Last year saw ASNC and our stakeholders provide unprecedented guidance to legislators and policymakers on an array of issues across the lifespan. We also completed a strategic plan that charts a course for the organization to continue to move forward and serve people with a wider array of services. Responding to the expanding and ever-increasing need for quality autism services, ASNC has been engaged in various consultative efforts across the state, in addition to providing direct supports, education, referral, and information to so many on a daily basis. We have been working diligently with the NC Department of Health and Human Services (DHHS) and the legislature on a myriad of issues, such as how Medicaid reform can provide holistic, comprehensive, and most importantly, quality, services to individuals with autism. We have ongoing efforts to inform the rewrite of the new Innovations waiver that will go into effect in January 2016. We have been working on the standardization of various business practices that will provide more efficiency for providers and families. We have spent much time advocating for improvement with the public system for preventing crises and accessing crisis services as well as looking at the concept of integrated care in NC for individuals with intellectual or developmental disabilities or Autism Spectrum Disorder. Additionally, we have worked with legislators and other professionals in the education system on transition issues. Finally, autism insurance is an ongoing priority for ASNC as well, and we will continue our work until private health insurance provides real coverage to individuals with autism. (Please see pages 16-17 for more on our public policy targets.) We applaud the State Health Plan for providing coverage for the diagnosis and treatment of autism to their benefits package. This went into effect January 1, and we are eager to begin providing those much-needed services to individuals across the state. (Read more on this on page 7.) We hope you will keep up with all of these efforts by following our blog at https://autismsocietyofnc. wordpress.com/. If you would like to become even more involved, sign up for our Policy Pulse email newsletter at http://bit.ly/ASNCPolicyPulseSubscribe.
Board of Directors Executive Committee Chair Sharon Jeffries-Jones Vice Chair Elizabeth Phillippi Secretary Darryl R. Marsch Treasurer John Delaloye Immediate Past Chair Beverly Moore
Directors Anu Bhatt John Cavanaugh Ray Evernham Ruth Hurst, Ph.D. Monique Justice
Preparing for the Future
Taunya Land
In the fall, we began implementing ASNC’s new three-year strategic plan, which was developed by the staff and Board of Directors in conjunction with OPEN MINDS, a leading nonprofit consulting company. The plan’s initiatives and recommended action steps will help ASNC position itself to better meet the growing needs of individuals on the autism spectrum and their families both now and in the future. Also, through the growth of specialty services such as employment supports and lifelong interventions, ASNC can and will help increase the capacity for high-quality services for the autism community across the state.
Hortense Lucas
The following goals have historically guided ASNC’s focus and decision-making, and will continue to do so: • T o provide the highest quality advocacy, training, education, and direct services across the autism spectrum and across individuals’ lifespans. • To be positioned and structured to accomplish our mission while ensuring sustainability to all of our stakeholders: individuals with autism, their families, professionals, the community, and the staff.
Fran Pearson Michael Reichel, M.D. Dale Reynolds Steven N. Scoggin, Psy.D. Dave Spicer John Townson Dana Williams Jeff Woodlief
• To inspire donors, friends, and volunteers as they support ASNC. What are we doing in 2015 to reach these goals? You can read about several of our efforts in this issue, including a new direction for our Clinical team, LifeLong Interventions. (See pages 6-7.) In March, we hope you will join us for our annual conference in Charlotte, Autism: Lifelong Learning. (Find more details on pages 4-5.) And if you’re looking for inspiration, you’ll find it at World Autism Awareness and Acceptance Day. Find the details on page 21 – see you there!
Tracey Sheriff, Chief Executive Officer www.autismsociety-nc.org • 3
“Autism: Lifelong Learning” is Theme for 2015 Conference
Register online today! http://bit.ly/ASNC2015Conference
On March 27-28, nearly 800 parents, self-advocates, and professionals will come together in Charlotte at the Hilton University Place Hotel for the ASNC two-day educational conference. The theme “Autism: Lifelong Learning” reflects the Autism Society of North Carolina’s goal of fostering lifelong opportunities for individuals on the autism spectrum. Topics will include best practices, school, medical issues, sexuality, and employment.
Dr. Aleck Myers, ASNC Clinical Director and chairman of the planning committee, said, “We know that individuals on the autism spectrum are lifelong learners. It is important to provide practical strategies for parents and teachers and address issues that present challenges over the lifespan such as school, medications, understanding sexual development and health, and how to foster a successful work environment. We feel that the topics will be informative and provide advice and ideas that can be implemented at home, in school, and in the workplace. We are also particularly pleased to have internationally recognized presenters Drs. Robert and Lynn Koegel and Dr. Geri Dawson at the conference to share their expertise with attendees.” The complete conference schedule is available on the ASNC website at http://bit.ly/ASNC2015Conference.
4 • The Spectrum, Winter 2015
Friday:
Daylong Workshop with the Koegels On Friday March 27, the Koegels will present a full-day workshop titled: “Pivotal Response Treatment (PRT): Improving Functioning, Improving Lives.” The Koegels, of the University of California, Santa Barbara (UCSB), developed the Pivotal Response approach to the treatment of autism. PRT helps learners by building on their interests and has been proven effective for increasing social behavior and developing communication, language skills, and play. It is listed as one of the top 10 comprehensive autism treatments by the National Academy of Science and is one of four scientifically sound, research-based treatments for ASD. PRT can be used in home, school, and community settings. The Koegels have appeared on many TV shows and written several books, which will be available in the ASNC Bookstore. Also on Friday, the exhibit hall will be open 7:30 a.m.-5 p.m., giving attendees the opportunity to meet more than 30 exhibitors offering a variety of services, products, and information.
Saturday:
You Choose Your Workshops This year, Saturday attendees will be together for the opening and closing sessions and will choose between concurrent workshops in the middle two sessions. The day begins with a keynote address by Dr. Geri Dawson, Director of the Duke Center for Autism and Brain Development. Dr. Dawson’s talk is titled: “State of the Science in Autism Research: What Do We Know and Where are We Heading” and examines recent research findings and the future direction of research efforts. The first group of concurrent workshops offers two important topics from well-respected professionals. • “Autism Plus: What do we know about medical and psychiatric comorbidities, and what do we need to find out?”: Dr. Jim Bodfish of Vanderbilt University will discuss autism and cooccurring medical and psychiatric conditions as well as research findings and the implications for families and professionals. • “Sexuality and Autism”: Dr. Mary E. Van Bourgondien of the TEACCH Program at UNC-Chapel Hill will share information about sexual interests and behaviors of adolescents and adults on the autism spectrum. Suggestions related to teaching appropriate behaviors and addressing inappropriate behaviors will be shared. After lunch, our second group of concurrent sessions looks at learning in two different environments: school and work. • “Collaborating with Parents Toward Positive Outcomes for Students with ASD”: Kim Tizzard, ASNC Autism Resource Specialist, and Dana Rusher of the NC Department of Public Instruction’s Autism Team will present information that parents want to know about school-based training and behavioral supports and how to work together to achieve successful outcomes. There will be time for questions and answers. • “Employing Adults with Autism: Creating Successful Small Business Ventures”: Gregg Ireland of Chapel Hill will moderate this panel discussion. The panel, composed of representatives of three business models that employ individuals with ASD, will discuss their approaches and how to develop similar programs in other communities. At press time, Walgreens, Extraordinary Ventures, and Rising Tide Car Wash planned to send panelists. The final session will be a panel discussion about a unique ASNC program located in Davidson, NC. IGNITE is a community center for young adults living with high-functioning autism and Asperger’s Syndrome that provides opportunities for social growth, learning, and skill development. The program has helped members live independently, find jobs, and develop other needed skills for independent living. Panelists will share how the program has helped them reach their goals and what needs to be emphasized as families prepare their children for adulthood. Saturday’s exhibit hall hours are 7:30 a.m.-3:45 p.m. g
Register Now for Early-Bird Rate!
Past conferences have been sellouts, so we encourage you to register early! The early-bird rate ends February 3. http://bit.ly/ASNC2015Conference.
Conference Rates General registration Individual w/ASD one day..........$135 one day............$90 two days........$250 two days........$160
College student one day..........$110 two days........$200
(All fees will increase by $20 on February 3) Registration includes access to lectures and the exhibit hall, a conference program and handouts, continental breakfast, lunch, and break refreshments.
Discounted Hotel Rooms & CEUs Conference attendees can reserve a room at the Hilton for a significantly discounted rate of $95 per night through the ASNC website by February 28. We are pleased to offer Continuing Education Units in 2015 through the Charlotte AHEC. At press time, the exact amount of credit hours offered per day was not finalized. Visit the conference page on the website for updated information. CEUs are $35 per day and can be purchased online or on site.
Financial Assistance ASNC recommends two sources of financial assistance: • Jean Wolff-Rossi Fund for Participant Involvement from the NC Council for Developmental Disabilities: This fund reimburses individuals with an intellectual or other developmental disability (I/DD) and parents, family members, or guardians of a child with I/DD or at risk of I/DD. It will pay for portions of costs associated with registration, child care, personal assistance, lodging, and transportation. To apply, contact the council at www.nc-ddc.org or 919-8502901. Funding is limited to $600 per year for in-state events per individual applicant. • CAP/Innovations Waiver Funding: Innovations waiver recipients and their natural supports system (family, caregivers, etc.) are eligible for funding assistance to attend the conference. Contact your care coordinator at your managed-care organization (MCO) and let them know that you wish to use Natural Supports Education funds. There is an annual limit of $1,000 for conference expenses. Please note that if a family member is employed/paid as a child’s caregiver, they cannot use these funds.
Exhibits & Sponsors We are pleased to announce that the Metlife Center for Special Needs Planning and Earth Fare have already signed on as sponsors for the conference. If you are a business owner – or know one – who is interested in participating in the conference, please contact David Laxton at dlaxton@autismsociety-nc.org or 919-865-5063. www.autismsociety-nc.org • 5
A New Program for Direct Services:
LifeLong Interventions
By Dr. Aleck Meyers, Clinical Director
The Autism Society of North Carolina is excited to announce the inauguration of a service to provide direct supports to children, youth, and adults with ASD What is LifeLong Interventions? Think early intervention, but
for all ages. At the Autism Society of North Carolina, we recognize that people with autism are lifelong learners. So we plan to offer direct training to individuals of all ages, using the same or similar evidence-based practices that have been demonstrated to be so effective with children on the spectrum. We will utilize elements of protocols such as Structured Teaching, Pivotal Response Treatment, and other principles of Applied Behavior Analysis (ABA) to teach socially appropriate adaptive behaviors, both in a natural environment and in discrete trial format.
What is “direct service”? At ASNC, we will use a tiered model. At the top will be our Clinical Director, Dr. Aleck Myers, a Licensed Psychologist, who will supervise other psychologists (LPAs) and Board Certified Behavior Analysts (BCBAs) who will assist him in assessing each client’s needs, designing a treatment package to meet those needs, and scheduling, implementing, and monitoring the client’s progress. The training will be done by certified Registered Behavioral Technicians (RBT) or Board Certified Assistant Behavior Analysts (BCaBAs) paraprofessionals under the direct supervision of our LPAs, BCBAs, and Dr. Myers.
recommendation on how many hours per week of treatment would best meet the individual’s needs.
Is parent/family training included? Yes. For maximum effect, a caregiver will receive coaching on some of the intensive training and the rationale behind it to extend the positive effects of the program. We view parents as partners in the intervention process. How can people access this new service? To sign up or find out more, contact Dr. Myers at amyers@autismsociety-nc.org or 919-865-2271.
What is involved with LifeLong Interventions? LifeLong
Interventions begins with a thorough clinical intake evaluation and functional assessment of need areas, including language and functional communication. Information is gathered for this intake from direct observation and from parents, family members, professionals, or others who know the individual well. The intake then guides us toward more formal assessments of areas such as verbal behavior, adaptive skills, attending, joint attention, imitation, communication, play, and social relations. From these, our clinical experts design an individualized treatment program to be implemented directly by our skilled paraprofessionals. Training programs combine both intensive, direct instruction and naturalistic teaching procedures depending on the learning activity and targeted skill. LifeLong Intervention programs may include, but are not limited to, interventions based on principles in common with evidence-based ABA programs such as the Early Start Denver Model, Pivotal Response Treatment, Verbal Behavior, Discrete Trial Instruction, and Structured Teaching interventions.
How often do the training sessions occur? LifeLong
Interventions programming can occur from a few hours per week up to as many as 40 hours per week, depending on need and the individual’s schedule. Research has shown that the efficacy of ABA therapy increases as service time increases. As we complete our initial assessment, we will make a formal written
6 • The Spectrum, Winter 2015
Is this available where I live? ASNC plans to start this program with a small number of individuals in the Triangle area, then expand to the areas served by the following ASNC offices: Asheville, Charlotte, Fayetteville, Greenville, and Greensboro. We will expand the program to regions based on interest level, so please let Dr. Myers know if you are interested even if you don’t reside in the Triangle area. What does it cost? How can I pay for this service? There are a variety of funding sources, including some insurance policies and private pay. We hope to receive donations to be able to offer scholarships for this in the future. The most exciting news, though, is the coverage offered by the State Health Plan (SHP) to state employees, which began January 1. See the next page for details as we know them at this point in time. And yes, with the SHP, both ASNC and Dr. Myers are in-network providers.
For more information about our Clinical team and services provided, see page 8.
Applied Behavior Analysis FAQs:
While LifeLong Interventions employs a variety of effective methodologies, many of its interventions use the principles of Applied Behavior Analysis (ABA).
Q: What is ABA?
Q: What does direct ABA therapy look like?
Applied Behavior Analysis is the scientific study of behavior. In practice, ABA is used to promote the acquisition of socially appropriate behaviors and reduction of interfering behaviors by systematically changing environmental variables and strengthening appropriate replacement behaviors.
While the structure and type of therapy delivered will vary depending on individuals’ unique needs and learning styles, ABA providers in general will use intensive teaching procedures designed to promote development and generalization of skills into natural settings. At ASNC, direct services are provided by a welltrained paraprofessional supervised by a psychologist and BCBA.
Q: Who can benefit from ABA services? ABA is often used as a treatment for Autism Spectrum Disorders (ASD). Though many treatment practices are advertised as interventions for ASD, Applied Behavior Analysis is one of the few that is evidence-based and has been shown to be widely effective and safe, based on scientific research.
Q: Who can provide ABA services? In North Carolina, ABA therapy currently can be delivered only directly by or under the supervision of a professional holding a state license in psychology. These individuals may be licensed at the doctoral level (LP) or as a master’s-level psychological associate (LPA). Practitioners delivering direct services must have extensive training in the field of behavior analysis and may hold a behavior analysis certification (BCBA) in addition to their license. Paraprofessionals who are highly trained in ABA principles and strategies may deliver direct services under the supervision of a licensed provider who has developed a comprehensive ABA program tailored to the individual receiving services.
Q: What skill areas can ABA therapy help to address? ABA typically focuses on increasing communication and language acquisition, developing age-appropriate social skills, and establishing pre-academic skills, such as attending to a task and following directions. In addition to those domains of functioning, ABA throughout the lifespan can also be used to teach independence with activities of daily living, community living and safety skills, and vocational tasks.
Q: Who is eligible to receive ABA services? The guidelines for eligibility to receive ABA services will often be determined by individual insurance companies. However, a diagnosis of ASD is typically necessary to qualify for services. To determine individual eligibility for receipt of ABA services, contact your insurance company. If your insurance provider does not offer ABA benefits at this time, you may consider contacting ASNC to explore private payment options. See below for information about ABA coverage under the State Health Plan.
State Employees Health Plan Adds Autism Benefits As of January 1, the State Health Plan (SHP) covers Applied Behavior Analysis (ABA) benefits for autism treatment. These benefits are available to members enrolled in any of the current health plans. The following guidelines should be followed to access these benefits: • The member receiving ABA benefits must be younger than 26 years old. • The member should have a diagnosis of autism, provided by a licensed physician or doctoral-level clinical psychologist. • The treatment must be deemed medically necessary by the Mental Health Care Manager. • All ABA services must be directly provided or overseen by a Licensed Psychologist (LP) or Licensed Psychological Associate (LPA) with sufficient training and expertise in autism and ABA. Paraprofessionals and non-licensed Board-Certified Behavior Analysts (BCBAs) may provide direct services with supervision provided by LP/LPAs.
The ABA benefit is available only in-network – ASNC is an innetwork provider – and has a maximum coverage of $36,000 per year. Beneficiaries will also be responsible for co-pays, coinsurance, and deductibles, as applicable based on their health plan. ABA benefits will not cover treatment for members with medical conditions that would impair their ability to benefit from the treatment, or members who currently receive round-theclock medical care in a hospital facility. For a full list of exclusions, please visit www.shpnc.org. For eligible members who are interested in accessing ABA services, please visit www.shpnc.org and select the “Find a Doctor” tab to search for in-network providers in your area. For questions about how this benefit will apply to ABA services on your individual plan, and to determine out-of-pocket costs for which you will be responsible, please contact a customer service representative for the SHP at 1-888-234-2416. You will need to provide a date of birth, group number, and insurance number. g www.autismsociety-nc.org • 7
What Can ASNC’s Clinical Services Do for You?
By Dr. Aleck Meyers, Clinical Director
ASNC’s Clinical Services department has grown considerably in the past two years. Since the arrival of Dr. Aleck Myers in January 2013, our department has expanded to include all forms of behavioral consultation and training. It now consists of:
Workshops and Presentations
• a part-time Licensed Psychologist (and doctoral-level BCBA)
The department also delivers workshops to professionals and community members on a wide range of topics. Training is focused on increasing understanding of autism, stressing the uniqueness of each individual on the spectrum, and teaching evidence-based best practices in working with individuals with autism. Trainings are offered in workshop settings, to small groups, and in one-onone direct coaching sessions.
• six master’s-level Licensed Psychological Associates (LPAs), five of whom are also BCBAs
Site-Based Coaching
• a Clinical Director who is a Ph.D. Licensed Psychologist (LP) • two lead trainers who are also Board Certified Behavior Analysts (BCBAs)
In the next six months, we expect to add one more LPA/BCBA and two regional trainers. This will enable ASNC to provide behavioral consultation and training supports to the areas served by the following ASNC offices: Asheville, Charlotte, Fayetteville, Greenville, Greensboro, and Raleigh. You can learn more about our experts on the ASNC website, www.autismsociety-nc.org, under the “Get Help” dropdown. We are also adding an exciting program called LifeLong Interventions. (See previous pages for more details.) LifeLong Interventions will enable us to provide direct evidence-based and promising practices such as verbal behavior instruction, Pivotal Response Treatment, Early Start Denver protocols, structured teaching, and other Applied Behavior Analysis (ABA) techniques. These apply to children, youth, and adults across the autism spectrum. We firmly believe that people with autism are lifelong learners, and while intensive early intervention is undeniably extremely beneficial for children at a very young age, children and adults of all ages can benefit significantly from these supports.
Behavioral Supports We provide behavioral supports to parents, caregivers, professionals, and self-advocates within a variety of settings, including the home, early childhood education settings, elementary and secondary education settings, adult day programs, and residential settings. The ultimate goal of our consultative service is to empower caregivers with evidencebased and relevant strategies to promote optimal outcomes for the individuals they support. Our behavioral supports can involve many valuable aspects, including but not limited to: • behavioral/functional assessment
• development of formal behavior support programs
• behavior consultations
• coaching on the programs’ implementation and related follow-up
• creation and use of structured systems and visual supports • functional communication training 8 • The Spectrum, Winter 2015
• empirical analysis of progress
We also offer direct site-based coaching as a component of the professional development training package. In many such cases, our lead trainers work closely with teachers, students, autism specialists, therapists, and other staff in the school setting and provide firsthand guidance on how to implement specific interventions and behavioral strategies that are proven to be effective for students with autism. g For more information about how Clinical Services can support you, please contact us at 919-865-5070 or training@autismsociety-nc.org.
Need Direct-Care Services? We Can Help ASNC is an accredited provider of many direct-care services throughout the state. These services can be paid for through funding such as Innovations/CAP waiver, b3, or IPRS (statefunded benefits); private pay; and in some instances, insurance. To learn about the types of services that ASNC’s trained staff can offer to your child, please call the office nearest you. ASNC Regional Services Offices: Asheville: 828-236-1547
Greensboro: 336-333-0197
Charlotte: 704-894-9678
Greenville: 252-756-1316
Fayetteville: 910-864-2769
Raleigh: 919-865-0681
State-Funded Services: There are three main sources of
state/federal-funded services: Innovations/CAP Medicaid waiver, b3, and IPRS services. All are managed locally through managed-care organizations (LME/MCOs). If your child already receives this funding, ASNC can be your care provider of choice in most areas. If your child is not receiving support through an MCO, we encourage you to ask them about obtaining support services. (Find contact information at this link: http://bit.ly/ LMEMCOcontacts.) There is a waitlist for waiver services, but by calling the MCO, you will start the process of determining eligibility for funding support. If you are currently on the waitlist, contact your MCO to make sure your child’s information is up to date. Some services, such as b3 or IPRS, may be immediately available based on funding and eligibility.
Private Pay: Some families prefer to contract individually with care providers to work on goals with their children. ASNC will work with families who wish to choose this option and develop a
plan for developing skills and reaching goals. To learn more about private pay, contact the nearest regional services office.
Insurance Coverage: The State Health Plan began covering autism therapy on January 1. As mentioned on page 7, ASNC is an in-network provider for autism treatments through the State Health Plan. Services will begin in the Triangle area and expand based on demand, so please visit our sign-up page at http://bit.ly/ ASNCformSHP to be contacted by a member of our Clinical team. Other insurers also may cover autism therapy. J.P. Morgan, Verizon, General Motors, and American Express Co. are just a few of the employers that offer benefits. Check with your human resources department to learn whether your company offers benefits.
Attention Families in Orange, Alamance, and Chatham counties! Cardinal Innovations MCO manages in-home skill building, a new b3 service that enables a child or adult with autism to acquire, maintain, and generalize new skills that support greater independence along with family involvement. It is a short-term, intensive service that generally lasts six months to one year based on funding and eligibility. The service involves in-person, direct coaching of the individual and training and participation of family members in the use of the strategies to address the needs. Goals are defined and progress measured. For services in Orange and Chatham counties, please contact Shelley Welch at 919-865-0681 or swelch@autismsocietync.org, and for services in Alamance County, contact Chris Liga at 336-333-0197 or cliga@autismsociety-nc.org g
Melissa Mulcahey Wins Direct Service Award Melissa was nominated by the mothers of two individuals she The Autism Society of North Carolina has named Melissa supports. “Melissa helps Davis continue to learn and grow. The Mulcahey of Asheville as the 2014 winner of the John and Claudia future for him is better with her in his life,” wrote Debra Walker Roman Direct Service Award. The annual award honors an ASNC in her nomination. Jillian Martin wrote, “It’s because of people direct service employee who has demonstrated outstanding like her that our kids are loved and accepted, our dedication to individuals with autism and families are comforted, and we can all attempt to “Melissa helps Davis their families. Mulcahey is a community skills instructor who has worked for ASNC continue to learn and have the most ‘neurotypical’ life possible.” for five years. Mulcahey received a cash award of $1,000 and will grow. The future for be recognized at the annual conference in March. “Direct support professionals are the ASNC received many nominations for the award, him is better with backbone of all ASNC does; they make a demonstrating families’ appreciation for the lifetremendous difference every day in the her in his life.” changing work that direct support professionals do lives of the families and individuals we every day. The John and Claudia Roman Direct Service Award was serve,” said Kari Johnston, ASNC’s Director of Services. “We endowed by Lori and Gregg Ireland to honor Christine Roman, the are pleased to be able to acknowledge them with the Roman direct service professional who worked with their son, Vinnie. It award, which also raises public awareness about direct support was named for her parents, John and Claudia Roman. professionals and the important work they do.” www.autismsociety-nc.org • 9
Supported Employment Brings Fulfillment David Roth’s parents never have to wake him up in the morning or push him to get out the door on time for his job. The 27-yearold with autism works at the Courtyard in Chapel Hill, mostly in the fast-paced, physically demanding laundry, but he is always happy to go. “He loves to work. He absolutely loves it,” said his mother, Susan Roth. David started working at the hotel when he was still in high school. It was a volunteer position, facilitated through East Chapel Hill High School, where the young man was having some behavioral issues when he was made to do things he did not want to do. “He was absolutely the happiest when he was out in the community and especially when he was at his job,” Susan said. Now, almost a decade later, David holds a paying position at the Courtyard along with two other part-time jobs, with the help of an employment supports instructor from the Autism Society of North Carolina. His mother says the jobs have helped him learn how to interact with other people, provided the consistent schedule that he needs, and given him pride and a sense of accomplishment. They have even improved his reading skills because he is interested in reading about his job duties as opposed to school topics. Lorraine La Pointe’s 25-year-old son with autism, Adam Ricci, also holds several part-time jobs. She says they have “opened up his circle”; when she is with him in the community, he always sees someone he knows. She also noticed that Adam has recently
matured. “I think it really has changed him.” Kathryn Lane, who is Adam’s employment supports instructor through ASNC, agrees, saying that Adam is calmer on the job than at other times. Having a job has also taught him responsibility as it requires him to be punctual, have clean, neat clothing, and manage his time as he completes tasks, she said. “Seeing the progress is really rewarding for me,” Kathryn said. “The goal is to make him independent someday.” For individuals with Autism Spectrum Disorder (ASD), meaningful employment is a key part of a fulfilling life, but studies have shown that as many as eight out of 10 are unemployed or underemployed. David Ingram, ASNC Employment Supports Director, said that individuals with ASD improve their odds of obtaining integrated employment 400% through using job placement services from an organization such as ASNC while using Vocational Rehabilitation supports.
Businesses Giving Back From the employers’ viewpoint, providing job opportunities for individuals with autism is a win-win situation. “The benefits that we have with David … it actually keeps us humble, grounded, and grateful,” said Lisa Giannini-White, the Director of Operations of Southpoint Animal Hospital in Durham, where David Roth works in the afternoons. “We thoroughly enjoy having David here.” Terry Hamlet is President of S.H. Basnight and Sons, a small Hillsborough company that makes specialty hardware, doors, and frames. Terry said she and her employees benefit from working with Adam and another employee with autism. “I think that at the core of each person, they like the idea of doing something for other people. I think that in some way, that is happening here,” Terry said. “Hopefully they can feel good about the fact that they work for people who care enough about other people to give them an opportunity.” Lisa said it was a part of Southpoint Animal Hospital’s original business plan to “offer opportunities to everybody.” Before David came to work for them, she did research about how to support individuals with autism and also consulted with his father about David in particular. When she talked to her employees about bringing David on, they were all for it, she said, and so she shared what she had learned.
10 • The Spectrum, Winter 2015
Valued Employees But it’s not just about a feeling they are doing good; David is a valued employee, a consistent team player with great attention to detail, Lisa said. “He helps others see that well, gosh, I guess I could be more detailed, or I guess I could be a little bit of a harder worker.” Alex Griffin also brings strong attention to detail to his position at the Center for Urban Affairs and Community Services (CUACS) at NC State University. Alex, a 30-year-old with high-functioning autism, does not need the assistance of an employment supports instructor, but he did participate in ASNC’s JobTIPS program, which emphasizes the development of social skills that are critical to identifying, applying for, securing, and maintaining employment. The group facilitator provides coaching and feedback for job interviews, encourages peer interaction, and helps members develop a broader community network.
operates on a visual schedule, and they have magnetic boards set up for his tasks. They are just on it.” The visual task boards give Adam the opportunity to choose the order in which they will do the tasks for that day as well the independence to move from one task to another, Terry said. At Southpoint Animal Hospital, Lisa also set up visual supports for David, such as laminated sheets showing his duties in the restrooms. Terry also said that employment supports instructors are a key to success for individuals with autism. With the job coaches supporting their clients well, there is more potential for growth in the job. Kathryn Lane, who has worked with Adam since July, said she has seen that; he has started recognizing more details at his job and times that tasks were not done correctly.
Sheila Brown, Alex’s supervisor, said he does not really need supports at CUACS and performs well in a variety of duties. “He’s got a great attitude, and everything he’s done for us he’s done very well, very thoroughly,” she said. The reviews of assessments and testing that their work group do can be tedious and require a lot of attention, and Alex has found things they might have missed, she said. He also is very responsive to feedback and happy to do anything that is asked of him. Alex said he would like all employers to know that “our value as employees isn’t overshadowed by the minor cost of accommodation.” David Ingram said, “Individuals with disabilities, including ASD, experience less turnover than nondisabled individuals, allow access to numerous tax incentives, and return an average of $28.69 for each dollar invested in accommodations. Individuals with disabilities and their networks represent a $3 trillion market segment, and 87% of customers prefer to patronize businesses that hire employees with disabilities. I’m excited to see businesses starting to understand the value in hiring workers on the autism spectrum and contact us seeking support in placing someone with ASD with their corporation.”
Supporting the Workers S.H. Basnight and Sons’ employees with autism are productive parts of the business because Terry matched tasks that the company needed to have done with their skills, just as she would with any employee, she said. Having patience and teaching how to complete tasks properly is necessary with any worker, she said. “There is no employee ever that is totally easy. The key is to work with people to help them do things correctly.” “It’s very important for everybody – it’s important with our children, it’s important with our co-workers, it’s important in our businesses – when there is a weakness, to help that person develop that.” Adam’s mother, Lorraine La Pointe, said Basnight has done an “amazing” job of supporting him. “They are just naturals. He
Adam Ricci works at S.H. Basnight and Sons with President Terry Hamlet, right. Kathryn Lane, left, is his employment supports instructor.
Part of the Team For employees without onsite support staff, many issues can be avoided with just a little research about autism and the employee in particular, said Sheila Brown, Alex Griffin’s supervisor at NC State. “We tend to have a stereotypical picture of what autism is, but it’s really more what autism is not,” she said. “Just be open, trying to make sure that the person is comfortable with what you’re asking them to do until they feel a comfort level with you and your staff.” Adam feels very comfortable with his Basnight co-workers and Terry Hamlet; when he sees her in public, he greets her with a hug. She said they strive to make him a part of their team. Adam’s mother said they have gone a step further, including him in parties for holidays and birthdays; “they treat him like family.” Terry says the effort was worth it. “My life and the life of our company is richer for having had them here. I really believe that.” g For more information about Employment Supports, please contact Director David Ingram at dingram@autismsociety-nc.org or 919-865-2267. www.autismsociety-nc.org • 11
Social Skills and Teachable Moments
By Kathleen Dolbee, Autism Resource Specialist “Go play!” is a phrase I used to hear as a kid, and I had no trouble finding friends on the block who had been given similar instructions. Generally, we could occupy ourselves and be unsupervised for most of the day. There was an accepted social hierarchy. If a problem arose, the oldest or most mature kids in the group would arbitrate. We learned from each other and gradually grew up knowing that if we wanted someone to play with us, we needed to be nice, share, and take turns. Checkers and chess taught us how to think strategically. Games like Simon Says and Red light, Green light taught us to think before we moved. Make-believe games and building projects gave us a chance to problem solve, think creatively, and work as a group. We learned that a winner who brags gets called a “jerk,” and if you pout or pitch a fit when you lose, then you’re a “sore loser” and you might not be invited to play again. These were critical skills acquired naturally. Those were the days…
Learning how to resolve differences, share, take turns, problem solve, collaborate, and control your emotions, behavior and mouth are life skills that are just as important today as they were when I was a kid. But the way that children play has changed dramatically. Television teaches children to be passively entertained and sends a subtle message that most problems can be resolved in less than 30 minutes. Video games reward impulsivity and encourage isolation. These days, many kids require more direct social-skills instruction and coaching than they did in the past. That is especially true for children who have social-cognitive deficits, as many kids with Autism Spectrum Disorder do.
First and foremost, I learned the importance of giving the needed instruction in the way that is most meaningful for visual learners, which means talking less and showing more. Should social skills be taught in public school? The simple answer is yes. Social thinking and social skills are anchored in the standard course of study for language arts. In addition, the North Carolina State Board of Education Mission statement includes the goal that “every public school student will graduate from high school, globally competitive for work … and prepared for life in the 21st Century.” (Italics added.) In her book The Hard Truth About Soft Skills: Workplace Lessons Smart People Wish They’d Learned Sooner, author Peggy Klaus 12 • The Spectrum, Winter 2015
writes, “Problems rarely stemmed from a shortfall in technical or professional expertise, but rather from a shortcoming in the soft skills arena with their personal, social, communication and selfmanagement behaviors.” Clearly, better outcomes are achieved when a student acquires social competence as well as knowledge and technical ability. Several years ago, at a conference in Knoxville, Tennessee, Temple Grandin put it this way, “You may be able to do the job better than anyone else, but if you call the boss a jackass, you won’t get hired!” Clearly, all students should receive instruction in functional social skills. However, because of the unique way that children with autism learn, teachers and parents may need to adjust the way they teach these important skills. Thankfully, much research has been done on the subject and many effective, easy-to-use strategies have been developed. I will share just a few of my favorites based on my own experience in the classroom and with my own son who is on the spectrum.
Use the Visual to Teach Social Skills First and foremost, I learned the importance of giving the needed instruction in the way that is most meaningful for visual learners, which means talking less and showing more. I also learned that the lesson needs to be taught when the need for the skill presents itself, literally in the moment. Also, the skill needs to be practiced where it is most relevant. That might mean pressing pause on a planned academic lesson to take advantage of a teachable moment that pops up spontaneously. For instance, many students with autism become experts in subjects that deeply interest them. If a lesson involves that favorite subject, it might be necessary to first teach the difference between a discussion and a lecture. Simply taking five
minutes to give a verbal explanation to the entire class, along with a visual reminder that everyone can see might be all that is needed to get back to academics. The visual might be a simple, two-sided sign. One side is green and says: DISCUSSION; the other side is red and says: LECTURE. Consistent, ongoing use of the visual will remind and reinforce the concept, and I guarantee that everyone in the class will benefit. A daring idea was presented by Dr. Jed Baker, director of the Social Skills Training Project and author, when he suggested that occasional role reversal, allowing the student to be the teacher, might help the student understand a teacher’s perspective and build self-esteem at the same time. Just as a roadmap can prevent you from getting lost, using Social Thinking creator Michelle Garcia Winner’s “expected” and “unexpected” behavior maps prior to an event, like a book fair or field trip, primed my students for success and prevented mayhem. Although designed to be a proactive strategy, I also learned to use the maps after the fact. Using the map backwards, we could do a social autopsy and find out where the social wrong turns were made and plan a different route next time. This could be done with one student privately or with the entire class, whichever fits the situation best. Processing this way was empowering and the kids learned that making mistakes is to be “expected.” After all, mistakes help teach us what we need to learn next.
Help on Perspective-Taking We all have thoughts. If we have managed to stay employed or married for any length of time, we have likely learned the social skill of editing our thoughts before we speak. We do this because we can take the perspective of the hearer. But perspective-taking is hard, and children with autism may require direct instruction. Drawing comics with speech bubbles and thinking clouds is an
easy and effective tool that parents and teachers can use alone or combined with social stories. The Incredible 5-Point Scale truly lives up to its name as a tool for teaching emotional regulation and more. The book The Hidden Curriculum teaches the unwritten rules that no one has actually been taught, but everyone seems to know. These are just a few of the many researched-based tools that can be successfully used to help children become socially competent. Their common factor is that they are visual and simple. The more familiar you become with a variety of social teaching tools, the more likely you will be to notice and take advantage of teachable moments that arise each day. After all, if a child has not learned to read, we teach him; and if a child has not learned to write, we teach him. So if a child has not learned how to “behave,” we need to teach him. g Kathleen Dolbee is an Autism Resource Specialist in the Asheville area. She can be reached at kdolbee@autismsociety-nc.org. To find an Autism Resource Specialist near you, go to http://bit.ly/ AutismResourceSpecialists. Look in the Autism Society of North Carolina Bookstore for these resources and more on social skills: The Hard Truth About Soft Skills: Workplace Lessons Smart People Wish They’d Learned Sooner, by Peggy Klaus Social Behavior Mapping: Connecting Behavior, Emotions, and Consequences Across the Day, by Michelle Garcia Winner The Incredible 5-Point Scale, by Kari Dunn Buron and Mitzi Curtis The Hidden Curriculum, by Brenda Smith Myles, Ronda Schelvan, and Melissa L. Trautman
Se Habla Español
La Sociedad del Autismo de Carolina del Norte ofrece varios recursos para ayudar a las familias hispanas afectadas por el autismo. Entrenamientos en español. Temas incluyen: • Comprensión del Espectro del Autismo • Programas Educativos Individualizados (IEPs por sus siglas en inglés) • Transiciones a Edad Adulta Grupos de Apoyo Hispanos ayudan a que los padres: • Obtengan información sobre programas, talleres de entrenamiento y servicios en su propio lenguaje • Compartan con otras familias las experiencias, preocupaciones y esperanzas en un ambiente cómodo y comprehensivo • Puedan reducir su sentido de aislamiento • Apoyan a otros miembros del grupo que necesiten ayuda
Para mayor información o ayuda en español, por favor contáctese con Mariela Maldonado, Enlace de los Asuntos Hispanos, a 919-865-5066 ó mmaldonado@autismsociety-nc.org. Además, la Sociedad del Autismo en Carolina del Norte tiene la biblioteca más grande del país enfocada en el autismo, y ofrece muchos títulos en español. www.autismsociety-nc.org • 13
Residential Options: We’re Here to Help Are you planning for your child’s move away from home? This can be an emotional time for any parent; if your child is affected by Autism Spectrum Disorder, the task can be made more complicated by your children’s needs. The Autism Society of North Carolina is committed to advocating for more resources for families affected by autism and helping you through your child’s transitions.
which honors the memory of fallen FDNY firefighter Jack Fanning, is committed to aiding the autism community and providing the appropriate research, educational opportunities, and support needed for individuals and families to reach their full potentials. ASNC will continue to present the workshop periodically.
New Toolkit ASNC’s new toolkit for parents and caregivers can help you: • Learn about available options, from independent living to group homes • Explore financial options for your child’s future • Teach independent living skills to your child
Some other workshops that may help you with transition issues:
• Research group homes for your child
• Journey to Adulthood
The toolkit can be read online, downloaded, and printed on our toolkit page: http://bit.ly/ASNCtoolkits.
• Guardianship: What You Need to Know
Workshops This past summer and fall, ASNC’s Autism Resource Specialists offered well-attended workshops called “The Next Step: Residential Options for Adults with Autism” around the state. The workshops and the toolkit were made possible by a grant from The Jack Fanning Memorial Foundation. The foundation,
• Developing an Individual Transition Plan: ITP @ 14 • The Importance of Developing Self-Advocacy Skills Check the ASNC website at http://bit.ly/ASNCWorkshopCalendar for a complete schedule.
Other resources Autism Resource Specialists, who are parents of children with autism themselves, connect families to resources and help them as they navigate the services system. Find contact information here: http://bit.ly/AutismResourceSpecialists. The ASNC Bookstore is a one-stop shop for quality autism books and materials selected by ASNC’s experienced staff; browse at www.autismbookstore.com. Here are a few we recommend: • Special Needs Planning Guide, by John W. Nadworny CFP and Cynthia R. Haddad • Preparing For Life, by Dr. Jed Baker • Moving Out: A Family Guide to Residential Planning for Adults with Disabilities, by Dafna Krouk-Gordon and Barbara D. Jackins • Life Skills 101: A Practical Guide, by Tina Pestalozzi
14 • The Spectrum, Winter 2015
Bullying: A Problem We Can Face Together Children with disabilities are bullied at far greater rates than their nondisabled peers. Students with Autism Spectrum Disorder often have characteristics that make them especially susceptible, including age-inappropriate interests, clumsiness, or inflexibility when it comes to rules. Recent incidents in the news have drawn attention to the issue with frightening examples of extreme bullying.
The Autism Society of North Carolina works year-round to ensure that students with autism have a safe learning environment in which they are treated as valued members of the school community. We collaborated with members of the legislature to pass the School Violence Prevention Act, which included specific language about bullying, in 2009. Since that time, ASNC has continued to educate and engage members of the House and Senate about bullying and its impact on students on the autism spectrum. Here are some of the ways we are addressing bullying today.
New toolkit Easy-to-use, accessible guide includes: • signs of bullying • ways to prevent bullying • how to stop bullying • overview of anti-bullying programs that have been proven effective for schools • detailed list of resources The toolkit can be read online, downloaded, and printed here: http://bit.ly/ASNCSchoolIssues.
Other resources Autism Resource Specialists provide support for families who are addressing challenges such as bullying and can also give presentations in schools about understanding those with autism. Find contact information here: http://bit.ly/ AutismResourceSpecialists. The Safe in the Community section of ASNC’s website addresses many safety concerns. Find it here: http://bit.ly/ASNCSafetyKit. The ASNC blog, at http://autismsocietyofnc.wordpress.com/, is a constant source of information. In a recent post, artist and motivational speaker D.J. Svoboda shared some wise words for those who may be facing bullying:
“I would say, Listen, You are Never, Ever alone! You are very, very Special and Very Wonderful for who you are. It is not your fault that some choose to Bully. It is their own Fault and not Yours! … Do not be afraid to tell someone about others who make fun of you! … Bullying is Never Okay and You Never Deserve to be Bullied!” The ASNC Bookstore offers many resources on bullying; browse at www.autismbookstore.com. Here are a few we recommend: • Asperger Syndrome and Bullying: Strategies and Solutions, by Nick Dubin • Intricate Minds II: Understanding Elementary School Classmates with AS (DVD) • No Fishing Allowed: “Reel in Bullying” (DVD, workbook and teacher manual), by Carol Gray and Judy Williams • No More Victims: Protecting those with Autism from Cyber Bullying, Internet Predators, and Scams, by Jed Baker
www.autismsociety-nc.org • 15
ASNC Public Policy Advocacy: Our Work & What’s Ahead for 2015 By Jennifer Mahan, Director of Government Relations As an organization dedicated to enhancing the lives of individuals on the autism spectrum and their families, we advocate for public policies that support people on the spectrum and monitor changes in our developmental disability and education systems. We have made tremendous progress in educating elected officials, especially in our state legislature, about Autism Spectrum Disorder. This past two-year legislative cycle brought great hope for passing autism insurance legislation and great disappointment when this was not accomplished. ASNC has worked to improve the operations of existing services and prevent an erosion of rights. The state has adopted a scholarship program for children with disabilities. ASNC has worked to reduce the impact of the economic downturn on the state’s budget for people with disabilities; while there has been an erosion of supports, many core services remain.
When we talk with people across the state, we know there is much, much more work to do to ensure that individuals on the spectrum have the supports they need. Our public policy agenda for the next two years reflects this need. The state has a long waitlist for services, students on the spectrum need more support in schools, and our services system must address people on the autism spectrum, regardless of how any new system is shaped. People with autism are lifelong learners, but they also have needs starting from a young age through adulthood and into their maturity, especially as their caregivers age. ASNC does not just work with elected officials; once laws have passed and funds have been appropriated, it’s up to state administrative officials to set program policies in place. ASNC staff members continue to provide feedback on improvements to the Innovations waiver (due for renewal in 2016) to make it more flexible, to push for autism services coverage under the recent guidance from the federal Centers for Medicare & Medicaid Services, to advocate for autism-specific crisis services, and to work with the NC State Education Assistance Authority on improvements to the scholarship program. We cannot do this advocacy alone. We need all of the families and individuals touched by ASD, whether as a parent, a self-advocate, a friend, a neighbor, or a service provider, to get involved in autism advocacy to create much-needed public policy changes. 2015 marks the start of the long legislative session that will run from mid-January through June. Legislators start with a “clean slate” and introduce new bills as well as a two-year state budget. 16 • The Spectrum, Winter 2015
We urge everyone in the autism advocacy community to begin working with your legislators now as they will be determining their priorities very quickly. Let’s make sure our priorities are theirs. Here are some easy ways to get involved in advocacy: 1. Sign up for the ASNC Policy Pulse email list. ASNC has created a periodic e-update focused on public policy and advocacy to keep you aware of what is happening across the state that may affect you or your family. You can sign up at http://bit. ly/ASNCPolicyPulseSubscribe. You can also stay informed by signing up for ASNC’s monthly email newsletter or following us on Facebook and Twitter. Visit the ASNC blog, at https:// autismsocietyofnc.wordpress.com/, regularly for the latest in issues affecting people with autism and their families. Learn more about all of these ways to connect at http://bit.ly/ ASNCStayInformed. 2. Get involved with your local ASNC Chapter or Support Group. Visit the ASNC website at http://bit.ly/ASNCChapters to find Chapters and Support Groups in your area. Volunteer to help – many Chapters are looking for volunteers interested in public policy and keeping other families informed! Check out any local e-groups. No Chapter in your area? ASNC works with local families to start new groups. Contact Maureen Morrell at mmorrell@autismsociety-nc.org for more information on starting local ASNC groups. 3. Build a relationship with your NC state legislators. Sharing our stories with legislators is one of the most powerful ways to
educate them on the need for supports for people with autism and their families. The start of the new legislative session following an election is a good time to introduce yourself to any newly elected legislators, and if you have not contacted them before, to let your elected officials know who you are. Check out our Advocacy 101 Toolkit for information and advice at http://bit.ly/ASNCContactingLegislators.
2015-2017 State Public Policy Targets ASNC issues two-year policy targets to match up with the twoyear legislative and budget cycle. We seek input on policy targets from community members, consider the legislative outlook, and decide which issues we will work on to create policy changes. Here are our 2015-2017 targets: 1. North Carolina needs to ensure a high quality continuum of services and supports for individuals on the autism spectrum and their families across the lifespan, with a focus on community settings and ensuring that people with Autism Spectrum Disorder achieve a good quality of life. This includes access to early intervention; developmentally appropriate services, supports, and interventions; health care; employment supports; and long-term care services.
2. The education system should be accessible to and better serve people with autism and other developmental disabilities. Students should have options that suit the unique needs of people with Autism Spectrum Disorder. • Ban prone restraints and promote Positive Behavior Support programs in schools. • Increase per-student funding for special education. • Increase autism-related training and professional development for teachers and other school staff. • Ensure employment is an outcome of education services by improving IEPs and transition plans as well as access to vocational training, job experience, and post-secondary opportunities that meet individuals’ goals and aspirations. 3. North Carolina should develop policies and invest in services to ensure quality life outcomes for people with Autism Spectrum Disorder and other developmental disabilities. Our public and private health-care system should support people in community settings, operate in a transparent fashion, be outcomes-focused, recognize the unique needs of people on the autism spectrum, and include self-advocates and families in the decision-making process.
• Eliminate or reduce waiting lists for community-based intellectual and/or developmental disability services (CAP/Innovations, b3 programs, state-funded services).
• Integrate physical, mental, and developmental needs into the public and private health-care system while offering high quality, autism-specific services and supports.
• Cover autism diagnosis and interventions for people with health insurance coverage.
• Address the needs of people with autism under Medicaid as NC considers new managed-care options.
• Expand access to autism-specific early intervention services.
• Focus the services system on person-centered outcomes.
• Expand autism training for law enforcement and first responders. • Expand availability of adult and children’s services: residential, crisis, employment, health care, and autism services and supports.
• Improve the distribution of services across the state. g Need help finding your elected officials? Have questions about public policy or advocating? Contact Jennifer Mahan, Director of Government Relations at ASNC, at 919-865-5068 or jmahan@ autismsociety-nc.org.
Show Your Support!
You can show your support everywhere you drive by purchasing an Autism Society of North Carolina license plate. A portion of the plate fee is donated to public awareness and autism education programs throughout the state. To learn how to order a plate from the NC Department of Motor Vehicles, go to http://www.ncdot.gov/ dmv/vehicle/plates/ and click on the “Specialized and Personalized Plates” icon at the upper right. www.autismsociety-nc.org • 17
Camp Royall
Register now for Summer Camp!
It’s the start of a new year, and that means it’s time to register for Summer Camp! We are accepting applications for the Summer Camp lottery through February 24. You can register and find all the latest information about our Summer Camp program, including the dates and rates for 2015, at www.camproyall.org. This summer, we will offer more day camp slots each week, which will enable more campers to attend. Campers will be allowed to attend multiple weeks of day camp. If you need assistance with registration or have any questions, please contact us at 919-5421033 or camproyall@autismsociety-nc.org.
What else is new at Camp Royall? We are excited to continue to expand our programming this year! We enjoyed a full week of overnight Winter Camp, a great opportunity for campers and families to take a break during the hectic holiday season. We are looking forward to building in some spring break and track-out camps in the spring as well. This year also brought major facility upgrades. In our gym, we have a new HVAC system – thanks to a generous grant – and a brand-new floor! The gym is a well-loved and well-used building at camp, especially during the cooler months and on rainy summer days. We were also able to add some additional shade structures by the pool and the zapline, making these activities even more enjoyable for campers in those hot summer months! These upgrades will have a great impact on many campers and families.
Better yet, print a copy of our 2015 flyer, found at http://bit.ly/ CampRoyallPrograms2015, so you won’t miss anything in 2015! Adult Retreat Weekends: Independent adults 18 or older with high-functioning autism or Asperger’s Syndrome can spend a weekend with friends enjoying activities at camp and in the community. Afterschool Program: Every day during the school year, children take part in outdoor activities, gym play, group games and more, while being supervised by trained and experienced staff members. Transportation can be provided, and siblings are welcome. Family Fun Days: Bring the whole family out to camp for a Saturday afternoon filled with recreation and leisure activities in a fun and safe setting. Family Overnight Camping: Come for the Family Fun Day and stay overnight! Enjoy dinner and a campfire together on Saturday night; breakfast on Sunday is also provided. Mini-Camp Weekends: Campers arrive Friday evening and stay through Sunday for a weekend of fun, providing a much-needed break for both campers and families. Winter Camp: Overnight and day camp options during winter break provide a great break for campers and families in the hectic holiday season!
Help Send Kids to Camp
Year-Round Programs 2014 was another awesome year at Camp Royall, and our yearround programs continue to grow tremendously. With our Afterschool Program and regular weekend events, there are not many days without campers around anymore! In 2014, we were able to serve more than 1,750 individuals and their families at Camp Royall. If you have not been out to camp in a while, we encourage you to check out all of the happenings throughout the year. 18 • The Spectrum, Winter 2015
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 oldest and largest camp exclusively for individuals with autism in the United States. We work year round to raise money to give campers who are unable to afford camp the opportunity to learn new skills, have fun, and make friends at camp. Each year, the demand for scholarships exceeds the funds we have available. We hope you will consider giving to provide life-changing experiences for campers with autism. Please contact Kristy White, Chief Development Officer, at kwhite@ autismsociety-nc.org or 919-865-5086 if you are interested in donating to camp, learning about named scholarships, or helping with fundraising. We look forward to working with you to help campers across North Carolina. Thank you! g
A “Not So Mini” Mini-Camp
By Lesley Fraser, Camp Royall Assistant Director In September 2010, five campers joined us at Camp Royall for our first-ever Mini-Camp Weekend, which we created to give campers of all ages an opportunity to enjoy a taste of camp throughout the year. This past October, we had our largest ever Mini-Camp with 22 campers, ages 4 to 34, coming from the Triangle, the Charlotte area, and as far as the coast of North Carolina.
This “not so mini” Mini-Camp was made possible by 18 of our wonderful returning summer camp staff members as well as a group of 14 recreational therapy students from Western Carolina University (WCU). During Mini-Camp, campers on all levels of the autism spectrum receive 1:1 or 1:2 counselor-to-camper attention throughout the weekend, so we need a large staff. The students’ adviser, Jennifer Hinton, had contacted us because she was looking for a learning opportunity for her students that weekend, when they were coming into town for a conference. We jumped at the chance to provide these students with an awesome hands-on learning experience and to spread autism awareness, as well as Camp Royall awareness. Of course this also allowed us to offer the Mini-Camp Weekend to more campers and families, who benefit from a weekend of much-needed respite. The WCU students arrived Thursday night and spent Friday training before the campers arrived in the evening. We hired two of our veteran staff members to work as consultants and continued to train the students while they were working handson with the campers throughout the weekend. Five more of our returning staff members “floated” and helped out as needed. One of our consultants for the weekend, Cassie Ball, commented, “Seeing the new staff learn so much and get their legs under them so quickly was really awesome. As they got to know autism and their campers, their confidence and enjoyment seemed to grow simultaneously.” Tim Cumberland, one of the WCU students, said, “Camp Royall changed my life, and it was one of the best experiences I have ever had in my young life. Camp Royall is the best camp I’ve ever gone to, and I hope others can say the same soon.” We have already heard from a number of the WCU students that they hope to return for year-round programs and Summer Camp next year, and we are excited to have them back!
unsure what sort of anxiety he would have. No need to worry. He was happy to arrive, happy when we left and happy while we were gone. His counselor, Carina Castro, one of the students from WCU, could not have been more sweet. At the end of the weekend, she was tearing up when it was time to say goodbye. “Camp Royall is one of the only places we can safely, confidently leave our son knowing he is in the best hands and happy to be there. I can’t say enough good things about camp!” Another parent, John Angell, said his son also enjoyed the weekend. “Eoin tries to communicate more often with people he likes and attempts things at Camp Royall he won’t do at home or in his day program. His counselor Kacey (a WCU student) said that Eoin was smiling all weekend!” We hope to replicate this weekend again soon with another group of students eager to learn. It is a great opportunity to train the future professionals who will be working with our campers. We continue to hear from our staff every year that what they learn at Camp Royall from the experience and from our campers is something that you can’t learn anywhere else. For me, this Mini-Camp was definitely a highlight of my 4-1/2 years of developing the year-round programs at Camp Royall. It was a joy to see all of the staff, new and returning, working so hard to make it a success for all of the campers. Throughout the weekend, there was a strong sense of teamwork as everyone worked together to support each other and each of the campers. With 22 campers here, as well as so many of our staff members, it felt just like a week of summer camp, something that is missed by all year-round! g
Leslie Welch, mom to Josh, one of our campers, shared, “This was only Josh’s second time staying at camp overnight. We were very www.autismsociety-nc.org • 19
Expert Picks
in the ASNC Bookstore
Check out these favorites recommended by ASNC’s Autism Resource Specialists and Clinical team! You can use the listed codes to search for them on our website, www.autismbookstore.com:
Autism: What Does it Mean to me? This updated edition of the bestselling book is designed like a workbook and covers self-awareness, self-acceptance, and selfconfidence. BAUT64
Ten Things Every Child with Autism Wishes You Knew This bestseller written by the mother of a son with autism illuminates and encourages understanding of your child, or any child, with autism. It is perfect for newcomers to autism. BTEN03
An Early Start for Your Child with Autism This book is highly recommended as a first book for parents who often have to wait for services after the initial diagnosis of their young child. It contains tools and strategies to help you, and your child, as soon as possible. BEAR05
Tasks Galore Series Developed by experienced teachers and therapists with TEACCH at UNC, the books in this series are perennial bestsellers. That is not surprising, given the wealth of practical advice and structured teaching ideas they provide for groups, home, and community. Sold individually and in sets. BTAS01
The Incredible 5-point Scale Originally designed to teach social understanding in the classroom, this book covers noticing and responding to others’ social behavior as well as your own. It provides a great way for all caregivers to communicate effectively. BINC10 When My Worries Get Too Big! This charming child- and adult-friendly book can help children with anxiety and behavior control problems to understand and learn effective self-calming techniques. Simple to use, it empowers them to take control. BWHE07 No More Meltdowns Although not specific to autism, this book helps caregivers learn to predict potential meltdowns and defuse them before they occur. It provides great practical advice. BNOM01 Preparing for Life This easy-to-use workbook for high school students transitioning to adulthood covers various topics such as relationships, social skills, and making career and education choices. BPRE04
/AutismBookstore Keep up to date on the newest books & resources!
Social Rules for Kids This guide to the top 100 social rules that kids need to succeed is set up like a friendly reference book with one rule per page. The easy-to-read handbook helps children and teens navigate the complex social world in which we live. BSOC17 The Hidden Curriculum We carry several books in this popular series that describe unstated rules and customs of social situations that many with ASD find challenging. Topics of each include understanding unstated social rules, everyday challenges, and getting and keeping a job. BHID03 Parenting Across the Autism Spectrum In this award-winning book, the two authors detail their journeys from diagnosis to adulthood with children on opposite ends of the spectrum. Their perspective on lessons learned is an invaluable message of hope and compassion – a must read for caregivers, teachers, and professionals. BPAR02
Contact the ASNC Bookstore for help in finding resources on a particular topic or in assembling a purchase order.
800-442-2762 (NC only) | 919-743-0204, ext. 1132 books@autismsociety-nc.org
3rd Annual World Autism Awareness & Acceptance Day • Bounce houses
• Lunch cookout
• Zapline
• Ice cream truck
• Hay rides
• Snoezelen sensory room
• Music DJ
• Face-painting
• Playground
• Outdoor games
• Gym
• Pond for boating & fishing
Come chat with ASNC staff, including our Autism Resource Specialists. In 2008, the United Nations General Assembly unanimously declared April 2 as World Autism Awareness Day (A/RES/62/139) to highlight the need to help improve the lives of children and adults who have the disorder. The Autism Society of North Carolina recognizes that acceptance of each person as an individual and of their ability to contribute to society is just as important, so we added “Acceptance” to the day. WAAAD has grown into a wonderful event, a day when new friends and old come together to celebrate community. We hope you will join us!
Thursday, April 2, 2015 10am – 4pm Camp Royall 250 Bill Ash Road Moncure, NC RSVP NOW!
The activities and lunch are free, but to help us plan for staffing and food, please sign up: https://camproyall. campbrainregistration.com/ camproyall@autismsociety-nc.org 919-542-1033
Order your T-shirt today! New this year! We’ve designed a special T-shirt that will debut during WAAAD. Pre-order yours by February 27, and we will ship to you by late March, in plenty of time for WAAAD. T-shirts will be sold during the event, but sizes and quantities will be limited.
We hope to see lots of you wearing them!
http://bit.ly/WAADtshirt
awareness is the first step acceptance is the goal
awareness is the first step acceptance is the goal
•1 00% cotton, pre-shrunk •$ 10 sizes youth small - adult XL •$ 12 sizes adult XXL - XXXL
www.autismsociety-nc.org • 21
Chapters & Support Groups
“These are a Few of our Favorite Things…” Finding Friendship, Acceptance, & Information Forsyth County Chapter
“The amazing, supportive people that have come into my life because of the Chapter. I consider these people my truest friends. I can trust them to watch (and understand) my kids or ask them for information about services, extracurricular activities, or medical advice. I love being part of such a supportive and accepting group of people that always have an answer, suggestion, or know where to point you to help find one.” – Emily Green, mom of Aidan
Sampson County Chapter
“So many of our members tell us how happy they are to finally have somewhere to turn and how good it feels to not feel alone.” – Amy Irvin, parent and member of leadership team
Learning Together Hispanic Support Group
“Recibí mucha información muy importante de como ayudar a mi hijo usando el iPad y que tipos de applicaciones usar.” – parent Victor Delgado after iPad workshop in Greensboro
Franklin County Support Group
(Translation: “I received a lot of useful information on apps that will truly help my child in many different areas.”)
“I love the freedom of sharing successes and learning from each other. I also love the atmosphere of an evening coffee meeting at the coffeehouse.” – Connie Stancil, Franklin Support Group Leader
“I like this group because we are able to understand and discuss similar experiences. I feel like I have found a home of like-minded people.” – Susan Williams, parent
To find a Chapter or Support Group near you, go online to http://bit.ly/ASNCChapters or contact Marty Kellogg, State Chapter Coordinator, at 919-865-5088 or mkellogg@autismsociety-nc.org.
Creating Social Opportunities & Fun Wake County Chapter
“My absolute favorite thing is seeing families actually out of their homes and in the community at our events. The annual Halloween party typically has more than 150 kids of all ages. It’s amazing, but I rarely see meltdowns at this event. I think parents are less anxious because it’s just us autism families, and the kids pick up on that. Plus the event is made for them with a giant slide and GF pizza. Always a great time for everyone!” – Leslie Welch, Wake County Chapter Leader
Providing Community Support & Awareness Onslow County Chapter
“We had such an overwhelmingly positive response to our Rock For Autism Benefit Concert! We even got our local rock station 99.5 The X to support our event and help us with an advertisement sponsorship for both our benefit concert and zombie walk. These bands have a big heart for our Chapter and autism community. They came out and volunteered their time and talent to help us achieve new goals in raising awareness and acceptance of autism. Many of the band members have family or friends that are on the autism spectrum or are working toward a degree in a field related to autism. To our surprise, we even found out one of the band members of Bridge to Breakdown actually has Asperger’s. Also our rock concert brought out many teens and preteens on the autism spectrum and their families.” – Marina Jorge, Onslow County Chapter Leader
Finding Support for Real-Life Situations & Challenges Guilford County Chapter
On Oct. 25, many families came out for Wings for Autism at PTI Airport sponsored by the airport, Delta Airlines, the Guilford Chapter, the Enrichment Center, and The Arcs of Greensboro and High Point. This “airline rehearsal” event allowed families to go through ticketing, the regular security screening process, waiting at the gate area, boarding the plane, and taxiing around the airport. The participants did so well, and all of the employees and volunteers were welcoming and encouraging to them and their families. At the end of the “trip” around the airport, children told us they were “going to go to flight school,” “Now I need to fly to Los Angeles,” and “I was scared at first, but now I’m not. I’m having fun!” “It was such a great experience we have already started planning next year’s Wings for Autism event!” – Lisa McCutcheon-Gutknecht, Guilford County Chapter Leader www.autismsociety-nc.org • 23
Autism: How Faith Communities Can Help Practicing one’s faith is important to many families of children and adults with autism and other disabilities. Families often turn to their faith communities for understanding, acceptance, and support as they work to meet the needs of the person with autism and come to understand his or her strengths and gifts. But often they struggle to find a faith community that will welcome and include them. Many faith communities want to help these families. They recognize that their communities are missing the presence and participation of people with autism and their families. Yet they lack an understanding of autism and feel ill-equipped and unprepared in how best to minister and provide support. With a grant from the Association of Maternal & Child Health Programs (AMCHP), ASNC is collaborating with the Autism Society of Cumberland County, the UNC-CH Carolina Institute for Developmental Disabilities, and the UNC-CH Department of Allied Health Sciences to create a training program to bridge the gap between faith communities and families. The first workshop in what we hope will be an ongoing effort was held in October as 120 self-advocates, family members, and faith community leaders and members came together for a daylong program titled Autism: How Faith Communities Can Help at Manna Church in Fayetteville. Participants said they gained a better understanding of autism and would use the information to help make connections to families and train fellow faith leaders. They also said they enjoyed hearing about local resources and meeting others in the community who were interested in the topic.
a parent raises concerns to a church leader about her child’s development. This session helped the audience understand the importance of early screening and diagnosis of autism and the roles that church leaders can play. The afternoon session focused on looking at autism from the perspective of the child with autism. ASNC Autism Resource Specialists Amy Perry and Judy Clute used their personal experiences as parents, advocates, and special-needs ministers to make a poignant case for why this outreach to special-needs families is so important. Closing the day was an amazing panel of parents and a self-advocate who shared their insights and experience in building and nurturing a special-needs ministry in their churches. They explained how this ministry benefitted not only the family but the entire church community. The workshop was enhanced by exhibitors from the Cumberland County region who staffed tables with information and consultation about how to access local resources. A follow-up workshop will provide more in-depth strategies to train special-needs ministry volunteers for their work to welcome and include people with autism.
The objectives of the first workshop were to: • Learn about autism and the challenges families face • Understand the importance of screening and early identification of autism • Connect with community resources for assistance • Learn from a panel of church representatives who are working in special-needs ministry • Learn how they can welcome and support families in their faith communities The interactive morning session was filled with video clips and audience participation around the idea of a church picnic where
24 • The Spectrum, Winter 2015
The grant provides additional funding for training in Robeson County in the fall. ASNC hopes to work with its Chapters and Support Groups to offer this program in other places across the state in the future. Please contact Maureen Morrell at mmorrell@ autismsociety-nc.org if you are interested in helping with this effort. g
Fundraisers & Events Run/Walk for Autism Events
The Autism Society of North Carolina’s fall Run/Walks create awareness about autism while raising funds throughout the state. More than 5,000 participants raised more than $430,000 to improve the lives of individuals with autism, support families affected by autism, and educate their communities. We are so appreciative of all the individuals, families, and businesses that participated, donated, volunteered, or sponsored this year. Here are some highlights from the fall of 2014:
Triangle Run/Walk for Autism A picture-perfect fall Saturday morning set the tone for the 16th annual Triangle Run/Walk for Autism in downtown Raleigh on October 11, which raised more than $330,000. A record-breaking number of participants (over 4,000) and 241 teams signed up to raise money in honor of a loved one with autism or to promote awareness in the community. Many teams showed their spirit and creativity with customized T-shirts, banners, and costumes. Even a dragon for Ry and Drew’s Dragon Crew joined in the fun! Team Liam raised more than $21,000, while Walking with Grace signed up 278 team members, a Run/Walk record.
WNC Run/Walk for Autism The 9th annual WNC Run/Walk for Autism on September 13 raised more than $45,000. More than 400 runners and walkers, 100 volunteers, and a variety of businesses participated in the family event to raise awareness and change lives in the community. UNC-Asheville hosted the run with its signature challenging course full of hills. The Warren Wilson Baseball Team came out in full force and provided exceptional volunteer service and encouragement to runners along the way. Team Marlowe took top honors again this year, having the largest team and raising more than $3,200.
Greensboro Run/Walk for Autism The 6th annual Greensboro Run/Walk for Autism was held September 27 at UNC-Greensboro. This year, the event raised more than $55,000 with more than 600 participants coming out to show their support. The High Point men’s lacrosse team brought 56 members to enjoy the competitive run, and Team Nadia’s Hope raised almost $3,400 for services in the Triad region.
Help Us Plan the Upcoming Run/Walks Our families, friends, supporters, committees, and volunteers work very hard year-round to make these events successful. We hope you will consider joining us next year for one of our
signature Run/Walk events. We currently have events planned in Asheville, Beaufort, Concord, Greensboro, Greenville, Mount Airy, Raleigh, and Wilmington. All of the Run/Walks are looking for new committee members to help the events continue to grow. For more information, email Heather Hargrave at hhargrave@ autismsociety-nc.org or call 919-865-5057. All of the proceeds from our fundraisers stay in our state to help North Carolinians affected by autism. Your contribution makes a difference! g
www.autismsociety-nc.org • 25
Run Sponsors: Many thanks to the following sponsors of our Fall Run/Walks for Autism. Please support these businesses and thank them for their support of the Autism Society of North Carolina.
Premier
GOLD MetLife Center for Special Needs Planning SM
© UFS
Proud sponsor of the
VISIONARY & CHAMPION
Partner 336events.com • BlackBird Frame & Art • Casey Rose Photography • Culligan of WNC • EarthLink • Feel The Sound Productions Financial Wellness Solutions - Security Marketing Group •Knights of Columbus/Saint Catherine of Siena • Mission Children’s Hospital Foundation • PPD • Sarah Catherine Designs • VF Corporation • UNC-Greensboro • Walkers Shortbread
Advocate Asbury Associates • Atlanta Bread Company • Butterfly Effects • Capital City Chapter of Jack & Jill of America, Inc. Carolina Pediatrics of the Triad • Chi Rho Omega Chapter of Alpha Kappa Alpha Sorority, Inc. • David Allen Company Greensboro Jaycees • Henco Reprographics • Higher Ground Pediatric Therapy • Jersey Mike’s • Kane Security KoKo FitClub of Cary • Lindley Habilitation Services • Mountain Xpress • P.O.W.E.R. of Play Foundation • Pediatric Possibilities Raleigh Neurology Associates • Ross Photography • SkyHouse Raleigh • Spyglass Promotions • Texas Roadhouse The Health Insurance Store • The HOP • Thomas, Knight, Trent, King and Company • Wake Radiology • Yes! Weekly Zachary W. Feldman, M.D., P.A.
Friends ABC of NC Child Development Center • Active Care • Asheville Compounding Pharmacy • Asheville Pediatric Dentistry Capitol Pediatrics & Adolescent Center, PLLC • Chick-fil-A • Fleet Feet Greensboro / Off ’N Running • Food Lion Friends and Family of Sara Handlan • LearningRx of Raleigh • The PorterHouse Bar & Grill • Raleigh Pediatric Dentistry Re:Cycles Bike Shop • Smedes York • The Red T-Shirt Company • United Collection Bureau, Inc. 26 • The Spectrum, Winter 2015
Team Liam Excels with Grandmother’s Love
It all started just two years ago, when Johnny and Emily Freeman invited family members to join them at the 2013 Triangle Run/ Walk for Autism. The couple’s toddler son, Liam, had been diagnosed with autism, and they wanted to go to the event as a family and raise autism awareness. Tammie and Jimmy Crawford, Liam’s grandparents, agreed to save the date. But Tammie decided she wanted to do more than spread awareness; she wanted to raise money to support the Autism Society of North Carolina and the families we help. “She decided she was going to do it, and just ran with it,” Johnny said. In just the two years since, Tammie and Team Liam have raised an amazing $30,863 for ASNC! “I am only a grandmother hoping to help in some small way,” Tammie said. “I have been very blessed to have my husband and friends join me in this effort.”
was looking for donated goods. “Before I knew it, I had other friends and people in the community that were giving and giving and giving,” she said. “It just took off.” The team has held three garage sales, raising a total of about $10,000. Tammie said the team was indebted to her father-in-law, who donated the use of a vacant retail space for their sales and other events, such as a carnival. For the carnival, local businesses signed up as sponsors, vendors paid fees, and the team sold tickets for activities including hayrides, face-painting, and a train ride. And of course, there was a bake sale at the carnival, too. “We always include homemade baked items, which always bring in good money,” Tammie said. The fundraisers have also been a way for Tammie to include others in her mission to help ASNC. In addition to “wonderful” friends who have given hours of their time to help organize and run the events, she has several teenage helpers, including one young man with autism. Tammie said she was happy to provide an opportunity for him to participate in the community and have a sense of accomplishment. He has even made a new friend. “Together they have the best time. It’s just another outlet for him. That has meant a lot to me.” Many of her friends have also joined Liam and his family for the Triangle Run/Walk for Autism each year. They wear Team Liam shirts and go out for lunch afterward, turning it into a fun day. “It just means the world to know that friends take their Saturday to go to the Run/Walk with us,” Tammie said.
How did they do it? With creativity and a lot of elbow grease. While some teams bring dozens of participants to the Run/ Walk for Autism events, Team Liam’s success has come through bake sales, garage sales, a raffle for a four-wheeler donated by MotoMax, and other fundraisers. “We’re just always constantly thinking what else can we do to generate earnings,” said Tammie, who lives in Henderson. The team’s first event was a garage sale. Tammie started by cleaning out her own closet, then spread the word that the team
She is also glad to know that Team Liam’s efforts are helping children beyond Liam, who has “come leaps and bounds over the last couple of years,” she said. He is more verbal now, at 5 years old, than when he was diagnosed at 2-1/2, using one or two words to convey his wants and needs. And like many children, Liam loves to play on an iPad, particularly an Angry Birds racing game, Johnny said. What does the future hold for Team Liam? Undoubtedly more success, with Tammie leading it! “Nothing’s going to stop her,” Johnny said. “If she wants to go after it, she’ll set her mind to it and do it.” g www.autismsociety-nc.org • 27
Walmart Foundation Grant Expands Employment Supports Program
The Walmart Foundation has awarded a $50,000 grant to the Autism Society of North Carolina to expand its statewide Employment Supports program. With the funding, the program will serve 85 adults with autism across the Triangle, Triad, and Fayetteville regions and will include work-readiness evaluations, JobTIPS training, job search, on-the-job training, ongoing job supports, and monthly support group meetings. As individuals with Autism Spectrum Disorder (ASD) finish high school and move into adulthood, they are often for the first time without resources or guidance to navigate the next chapter of independent living and employment options. It has been estimated that about 80 percent of adults with ASD are unemployed or underemployed. However, an autism diagnosis does not mean an individual’s potential for successful career opportunities is limited. ASNC’s Employment Supports program is specifically tailored for individuals to ensure they are placed in a job that reflects their unique interests and abilities. Individuals also receive comprehensive training and ongoing support throughout the program, in order to maintain employment in the long term. The JobTIPS component serves as an important part of the training process, teaching individuals the skills necessary for networking, creating a resume, and interviewing. One participant appreciates the training module’s structure, which gives him the freedom to search for his own jobs while learning and practicing interviewing skills he can put to use in formal job interviews. Upon successful completion of JobTIPS, participants transition to
a formal employment search and in the future, a job where they are well-suited. “JobTIPS has been very beneficial to individuals in developing their job development skills, and most would not have been able to attend if the program had not received funding from the Walmart Foundation,” said Shannon Pena, ASNC Employment Supports Coordinator. “Two individuals who attended JobTIPS found jobs before the classes were complete!” Walmart and the Walmart Foundation are committed to helping people live better through philanthropic efforts. By operating globally and giving back locally, Walmart is uniquely positioned to address the needs of the communities it serves and make a significant social impact within its core areas of giving: Hunger Relief & Healthy Eating, Sustainability, Career Opportunity, and Women’s Economic Empowerment. Walmart and the Walmart Foundation are leading the fight against hunger in the United States with a $2 billion commitment through 2015. Walmart and the Walmart Foundation have donated more than 1 billion meals to those in need across the country. To learn more about Walmart’s giving, visit www.foundation.walmart.com. g To register or for more information about free JobTIPS programs offered in Fayetteville, Greensboro, and Raleigh through the Walmart grant, please go to http://bit.ly/ASNCEmploymentSupports.
Hardison & Cochran Teams Up for Autism Awareness
This football season, Hardison & Cochran of Raleigh teamed up with the Autism Society of North Carolina and the University of North Carolina at Chapel Hill to raise awareness of autism in the Tar Heel state. Hardison & Cochran provided a media blitz to help others understand how to get help or get involved with ASNC. They reached out to the community through commercials on the “Larry Fedora Radio Show”, “Inside Carolina Football with Larry Fedora” and every UNC football game radio broadcast, print advertisements, and in each program sold at UNC games this season. In addition, Hardison & Cochran sponsored an autism awareness night at the first game of the season. “We were very excited to team up with the Autism Society of North Carolina and UNC football to raise awareness of autism,” Ben Cochran said. “It’s a great cause, and our firm is proud to be able to help them get the word out statewide about the great things they are doing.” g
28 • The Spectrum, Winter 2015
Host a Fundraiser to Help Families
Volunteers throughout our state host fundraisers to benefit the Autism Society of North Carolina. They rally friends, families, and colleagues to participate in restaurant nights, donate proceeds from the sale of various items, or create a unique event. It all starts with an idea. If you are interested in hosting your own fundraiser, please contact Heather Hargrave at hhargrave@autismsociety-nc.org or 919-865-5057. ASNC is grateful to the many individuals and businesses that host fundraisers to help families affected by autism. We would like to thank the following for recent events: “Yard for a Cause” Event - Phillip McHugh Aaron’s Awareness Fundraiser - Aaron’s Rental All Play for Autism Blue J Beads Burlington Royals Autism Awareness Night Carolina Hurricanes Chiquita Classic Chuy’s Awareness Fundraiser Double Barley Brewing Awareness Fundraiser Dunn Benson Ford Stangs R Us Car Show Forged Fitness Full Throttle Car Club Car Show
Greenlife Grocery Store “Donate a Dime” fundraiser H2O Tuning “V-Dub for a Cause” Fundraiser Iron Order MC Club – Cary Chapter Poker Run Jake Ruggles Radio Broadcast Jamestown Food Truck Festival Michael William’s “2nd Chance Prom” Middle Creek High School Jeans Day MillBridge HOA Turkey Trot OSEGA Gymnastics’ 3rd Annual Miles Avery Awareness Classic Peebles “30 Days of Giving” Progress Energy Golf Tournament
Sanford High School’s JROTC Awareness Event Shane “Hurricane” Helms’ “Loco in Joco” Autism Awareness Event (cage fighting) Softpro Dress Down Day Fundraiser Tammie Crawford TIPS Golf Tournament Tuna Run 200 Wakefield High School Cheerios Wavelengths Salon “Haircuts for Autism” Event Wells Fargo Jeans Day Wine for a Reason Zipping for Autism
Triangle Indian-American Physicians Society Charity Golf Tournament Benefits Adults with Autism The Triangle Indian-American Physicians Society’s first annual charity golf tournament benefitted the Autism Society of North Carolina’s efforts to help individuals with autism find and keep meaningful employment. Participants enjoyed a great day of golf at the beautiful River Ridge Golf Club in Raleigh on Sunday, June 22, followed by an awards reception and full dinner.
The TIPS tournament raised $15,000 for employment supports. ASNC believes meaningful employment is a key part of a fulfilling life, and the Triangle Indian-American Physicians Society (TIPS) is proud to back ASNC’s efforts and support the community. For information on participating in this event next year, contact Kristy White at kwhite@autismsociety-nc.org. g
www.autismsociety-nc.org • 29
The Autism Society of North Carolina would like to extend a heartfelt thank you to all of our donors. While we appreciate every gift, we have limited the donation list to Honorarium/Memoriam gifts in the interest of space and printing costs. Thank you for your tremendous support.
A Growing Community: Implications for Our State
This list reflects donations received on or between July 1, 2014, and November 30, 2014. Please contact Beverly Gill if you have any questions or corrections at 800-442-2762, ext. 1105, or bgill@autismsociety-nc.org.
Honorariums By David Laxton Aaron
James F. Jordan, Jr.
Ryan and Matthew Smith
Advocacy Department of ASNC
Noah Joseph
Judy Smithmyer
Teresa and Anthony Andrews
Nancy and Ivan LaCross
Jaime Alvarez Jean Alvarez
Harris Anderson
Margie O’Shields
Julian Ballen
Womble, Carlyle, Sandridge & Rice Beth Miller
Jeff Bartolet
Betty and Ray Ingool
Emilie Grace Beacham
Anne and Lang Anderson
Shanlee and Paul Brown Shannon and Darin Mock
Alysssa Coleman
Cristi and Larry Coleman
Dorothy and James Jordan
Nadine and David Antonelli
Marty Kellogg
Denise McGann
Augaly Kiedi
Melissa Jo Joyce and Ken Johnson
Sheila and David Larsen Jeff Akin Hailey Hamalainen Cynthia and Joseph Marz James Talbot
Jacob Fox
Khloe Mossman
Sara Gage
Erica Nesbit
Gillian Hayden
Miles Targosz Ellen Nielsen
BrieAnne Tarnowsky
Melissa and Ralph Ripper
Cameron Ward
Montwood Baptist Church Kathy and Lanny Vaughan
Michael Jacob Morris
Beverly Gill
Paige Barnhill
Jessie Lunsford
Lily Dwyer
Robert Vaccarelli
Thomas Summers
Jordan Vickers
Elizabeth Rawls
Michael Milano
Yaidee Fox
Gina and Jeffrey Stocton
Jennifer Lucero
Colleen and John Fitzsimmons
Dillon Davis
Sharon Phillips
Grayson Stocton
Addison Venable
Marvin McManus
Nancy Pickren
Diane Bell Heidi Bublitz
Anthony Little
Tyante Craig
Marsha and Elijah Woods
Barbara and Crawford Smith
Catherine and Thomas Fox Margie O’Shields Melissa and Michael Morris Christina and Gordon Flake Lori Roberts
Elizabeth Phillippi Marcia Dorfman
Lemon Springs Baptist Church Mary and Michael Keown Nancy McDermott
Kelly Ware
Elizabeth Catlett Peggy and Ira Rigsbee Church of God of Prophecy
Jesse Wills
Evelyn Bond Gail Rhodes Betty and Al Scarborough Sandra and James Scarborough Shirley Scarborough Sherry and Dan Smith Betty and Philip Staley
Katie and Lewis Wills Barry Cooper
Corey Green
Gail and Bob Pope
Casey Greer
Kelly and Aaron Pruner
Alex Griffin
Andy Raxter
Memorials
Sam Heitman
Jayden Richardson
Jane Rupert Avedon
Samuel P. Mandell Foundation Sabrina and Jefferson Osborne Audrey and William Griffin Cathy and William Heitman
Julie and John Seibert Kelsey Schultheis
Linda and Henry Raxter Joyce Hendricks
Rudy Winter
Jane and William Rountree
Maureen and Rob Morrell
Peyton Hipson
Jacob Thomas Ricks
Edna Bowen
Evan Holt
Justin Rigda
Ron Bumbarger
Chris Idol
Ryan Roshioru
Edith Redwood Cooke
Sharon Jeffries-Jones
David Sasser
June Hillyer
Julie Wright Sandra and Douglas Wilson BB&T Community Development Leadership Team
Grayson Jones
Nichole Thompson
Debbie and Edward Ricks Cathie and David Blakeslee Denis Roshioru Jean and Henry Sasser
Chantelle and Robert Sipprell Jill Ryan
Cody Smith
Kaitlyn Smith
30 • The Spectrum, Winter 2015
Betty Sobotka Sharon Sanden
Sealed Air Corporation W. D. Williams Elementary School Bella Adams Pamela Alexander Kathy Bowman Atkins Jo Ellen Bass Kathryn and Thomas Bass
Helen Cable Janet David Walter Gerald Janet and Thomas Seitz Amanda and James Sparger Russell Tyson
Mary Carter Davis Nancy Pickren Patricia Roseman Brian Simmons Terry Walton
LeRoy Dawkins
Steward, Ingram & Cooper, PLLC William Bateman Darla Husk David Lanier Kameron Nance Lisa and Harold Sasser
Richard Dawkins Gail Dawkins
Betty Goble
Elizabeth Whitton
Hazel Mae Hicks Grose
Pinnacle Church of God Katharine Amato and Albert Rives Roberta Fry Janet Henry
Bernice Harris
Jane and Pete Roda
Dwayne Eric Holder
Susan and Randy Carter Agnes and Tony Kelly Nancy West
Marie Grieneisen Holleran Schneider Electric
Charles “Chuck” Hydeman Jane Hydeman
Rock Jolly
Kathy and Lanny Vaughan
Ernest M. Cabe, Sr.
Piedmont Electric Elaine and Calvin Johnson Ruby and Frank Miller Betsy and David Parker Susan Toporowski
Karen Mauldin
Lucille and Richard Floyd
Gregory McCrawey
Ann and Robert Lucero
Candice McDaniel
Rashkis Elementary School
Public Policy
John J. McGovern
Jean and Mark Calkin
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Parent(s)/Guardian(s) Name: ________________________________________________________________________________________________
Attach recent photo here
Address: ___________________________________________________________________________________________________________________________ Primary phone number:________________________________________________________________________________________________________ Secondary phone number: ____________________________________________________________________________________________________ Email address: ___________________________________________________________________________________________________________________
ADDITIONAL CAREGIVER Name: _____________________________________________________________________________________________________________________________
Directions: Print this page out, cut along the dotted line, and fold where indicated.
Address: __________________________________________________________________________________________________________________________
Meet first responders: Go to your local police station, fire station, and EMS to talk about your loved one with autism and give officials a current photo and a personal information handout. (We have an example you can use here.) If possible, bring children with autism so they can see people from whom it would be safe to seek help. Adults with ASD and those with high-functioning autism or Asperger’s Syndrome may have sophisticated spoken language but still not respond properly to officers. It is important to teach these individuals what to say if they are lost or hurt and to self-advocate. You can let first responders know that ASNC also offers training sessions for them if they would like to learn more about how to interact with individuals with ASD. Our Autism Resource Specialists have found that when requests come from families, rather than our organization, first responders are much more receptive to having the training.
Primary phone number: ______________________________________________________________________________________________________ Secondary phone number: ___________________________________________________________________________________________________
Name
Email address: __________________________________________________________________________________________________________________
Nickn
: ________
ame, if
________
________
________
any: ____
t:________
Register your child: NC counties keep special-needs registries, and families can register their loved one. If a 911 call comes in from the family’s home, the registry automatically pulls up important information for first responders. In your home: Consider putting safety items in place such as a home security alarm system, window locks, and alarms on windows and doors to alert you if someone is trying to open them. For some children, a simple lock is effective if it is out of their reach. Sometimes putting a “stop” sign on doors and windows can prevent a person with ASD from going any farther. Consider putting a fence around your home with locked gates. If you have a pool, make sure the pool is not accessible without supervision. Teaching your child to swim is important, but it isn’t a guarantee that it will save someone from drowning. At school/day care: Discuss with your teachers your concerns about your child’s safety. Make sure they and any other caregivers know what to do if your child wanders. Make safety part of Individualized Education Program (IEP) goals.
________
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t(s)/G
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Weigh
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Address: __________________________________________________________________________________________________________________________ Secondary phone number: ___________________________________________________________________________________________________
“SAFE IN THE COMMUNITY”
Teaching your loved one: Teach your child how to safely cross the street; the meaning of street signs, such as “STOP”; and who is a safe person and who is a stranger. Talk to your child about safe places to go if they are lost or hurt: police stations, fire stations, schools, etc. Consider using social stories or picture schedules to teach them what to do in dangerous situations that they might encounter once they wander.
AUTISM SPECTRUM DISORDER SAFE IDENTIFICATION CARD
Identification information: Consider a wearable ID such as a bracelet, tags in their clothing or on their shoes, or even electronic tracking devices. For sources, click here.
Primary phone number:_______________________________________________________________________________________________________
• Might DART AWAY from you unexpectedly. • Might WANDER ANYWHERE AT ANY TIME. Wanderers are often attracted to water sources such as pools, ponds, and lakes. Drowning is a leading cause of death for a person with autism.
Email address: __________________________________________________________________________________________________________________
• Might become UPSET FOR NO APPARENT REASON.
METHOD OF COMMUNICATION: if nonverbal (e.g. sign language, picture boards, written word )
• Might engage in SELF-STIMULATING BEHAVIORS such as hand flapping or rocking.
_______________________________________________________________________________________________________________________________________
ID ON PERSON: (e.g. jewelry, clothing tags, printed card, or tracking device) _______________________________________________________________________________________________________________________________________
MEDICAL CARE PROVIDERS:
• Might NOT be able to make EYE CONTACT. Check with the local 911 center to see whether the affected person is “red-flagged” in the database.
Physician:_____________________________________________________________________________________________________________________________ Phone number:________________________________________________ Dentist: _______________________________________________________________________________________________________________________________ Phone number:________________________________________________ Other: __________________________________________________________________________________________________________________________________ Phone number:________________________________________________ Current prescriptions, including dosage: _________________________________________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________ Sensory, medical, allergy, or dietary issues and requirements: ____________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________ Inclination for wandering and any atypical behaviors or characteristics that might attract attention: ________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________ Favorite attractions and locations where person might be found: ________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________
(name of person with autism)
FOLD
Name: _____________________________________________________________________________________________________________________________
________
________
t: ________
Care of Children and Adults with Autism
• Might NOT UNDERSTAND what you say, appear to be deaf, be unable to speak, or speak with difficulty. • Might appear INSENSITIVE TO PAIN.
EMERGENCY CONTACT
________
________ ________ ________ ________ ________ ________ __ Ag ________ e: ________ _______ ________ Eye Co ________ lor: ____ ________ me: ____ ss: ____ ________ ________ ________ ________ __ Hair _ ________ ____ Color ________ ________ Primary : ________ ________ ________ phone ______ ________ ________ numb ________ ________ er:____ ________ ________ ________ ________ ________ ________ ________ ____ ________ EMER ________ ________ ________ GENC ____ ____ Y CONT ________ _______ ________ Name ACT ________ : ________ ________ ________ ________ ________ Primary ________ ________ phone ________ numb ________ er:____ ________ ________ ________ ________ ________ ________ ________ ________ ________ ________ ______ ________ ________ ________ ________ ____ Heigh
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Tips for On-Scene Caregivers and Emergency Personnel for the
_________________________________________________________________________________________________________________________________________________________________________________________________________________ Likes and dislikes, including approach and de-escalation techniques: ___________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________
FOLD
Our Autism Resource Specialists offer a workshop titled “Staying Two Steps Ahead: Safety Considerations for Caregivers,” which covers how autism can affect safety, how to be proactive, and safety-related resources. Find the schedule for all of our workshops at http://bit.ly/ASNCWorkshopCalendar. ated.
Name: _______________________________________________________________________________________________________
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Crowe Dreambuilders Partnership Edmondson Accounting Service Linda and Tilmon Keel Nancy McDermott
Do not isolate yourself: Talk to neighbors about children or family members with Autism Spectrum Disorder (ASD) and their challenges, in case they wander out of your home or yard. Give them your contact information. Consider asking them, and any other friends and family who live nearby, whether they would be willing to help you search for your child in an emergency situation. Keep a list handy of names and phone numbers for those who agree.
Identifying marks or scars: ___________________________________________________________________________________________________
Nickname, if any: ______________________________________ Age: _________________________________________
LuAnne Denson West
Height:___________________________________________________________________ Weight: _______________________________________________ Eye Color:_______________________________________________________________ Hair Color: __________________________________________
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Height:_______________ Weight: ________________Eye Color: ______________ Hair Color: ______________
Sarah Kramer
Date of birth: __________________________________________________________ Age: ___________________________________________________
Parent(s)/Guardian(s) Name: ________________________________________________________________________
Terry Warner
Nickname: _________________________________________________________________________________________________________________________
Address: ___________________________________________________________________________________________________
William Blount
Tips for Keeping Loved Ones with Autism Safe
Primary phone number:________________________________________________________________________________
Charles Mitchel Turner, Jr.
Name of child or adult with autism: ________________________________________________________________________________________
MAY NOT RESPOND TO VERBAL COMMANDS
EMERGENCY CONTACT
Donna Hosley Georgianne Kraft
WANDERING:
PERSONAL INFORMATION RECORD
Name: ______________________________________________________________________________________________________
Rosemarie Totaro
PERSON WITH
AUTISM
Primary phone number:________________________________________________________________________________
Pier Pointe Phase Four Property Owners Ron Zoby Tours, Inc. Lewellyn and James Bradshaw Anne and John Forsythe Judy and Jerry Goodman Terri Lancaster Linda and Reid Pittman Paul Pittman Linda and Bobby Rouse William Shrago Kimberly and Robert Smith Myrtle Summerlin Michelle and John Whitfield
• “Person with Autism” decals or clings you can order for your home or vehicle
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Dorothy Clemmons Summerlin
• printable “personal information record” for you to fill out and share with first responders
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Linda Bass
• links to other resources and products such as ID labels
• tips sheet on wandering prevention
MUNIT
Michael Smith
• ID card you can print or order
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Caviness and Cates Building and Development Co. Louise and Sidney Brooks Mary Chaplin W. Galen Hobbs James Raynor Mildred and Dillard Teer
• social narratives to teach individuals how to be safe
“SAFE IN TH
Reece “Sandy” Albright Robertson
AUTISM SAFE SPECTRUM IDENTI D FICATI ISORDER ON CA RD
Peggy Rigsbee
The Safe in the Community section of our website, at http://bit.ly/ASNCSafetyKit, includes many resources that can help with wandering and other safety concerns.
autism)
Clare Hall
Ira Rigsbee
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Randall Hinds
Joan Regan
We want to help you keep your loved one with Autism Spectrum Disorder safe.
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Arlene Price
Safe in the Community
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Edwards Metal Shop Inc. Lougunda Patterson Jane and John Stanley
FOLD
Laura Clark
Kathleen Salmons Patterson
FOLD
Ruby Nabors
Our trainers also conduct workshops for first responders across the state, teaching them how to interact with individuals with autism. Let us know if you would like us to collaborate with your local officials. We can work together to keep our loved ones safe. If we can help you in any way, please contact us at 919-743-0204 or info@autismsociety-nc.org, or find an Autism Resource Specialist near you: http://bit.ly/AutismResourceSpecialists.
www.autismsociety-nc.org • 31
Non-Profit Org. U.S. Postage
PAID
505 Oberlin Road, Suite 230 Raleigh, NC 27605-1345
Raleigh, NC Permit No. 2169
Spring 2015 Events Carolina Hurricanes Autism Awareness Night Raleigh – March 14
Surry County Chapter Walk for Autism Mount Airy – April 25
Cabarrus County Chapter Puzzle Concord – March 14
Camp Royall Classic Golf Tournament Chapel Hill – May 4
Eastern Run/Walk for Autism Greenville – April 18
Crystal Coast Chapter Run/Walk for Autism Beaufort – May 16
Coastal NC Run/Walk for Autism Wilmington – April 25
Zipping for Autism Asheville – June 7
Stay tuned for dates for Catwalk to Camp - Raleigh & Charlotte Events
For more information about these events, please contact Heather Hargrave at 919-865-5057 or hhargrave@autismsociety-nc.org
2015 Annual Conference
Autism: Lifelong Learning March 27-28, 2015 • CHARLOTTE
Keynote speakers: Drs. Lynn & Robert Koegel, creators of Pivotal Response Treatment For more information, see pages 4-5