EVERYONE CAN FLY SUMMER VACATION TIPS for

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PLUS: United StateS Military Section INSIDE:

THE AADMD on VACCINATIONS ORGANIZATION SPOTLIGHT: JUNE 2015

L’ARCHE EPARENT.COM

EP’s NEW INTERACTIVE SITE AND:

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SUMMER FUN PLUS:

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SUMMER VACATION TIPS for MILITARY FAMILIES

Promoting

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CONTENTS

JUNE 2015 VOLUME 45 ISSUE 6

50 GENETIC ALLIANCE

24 EVERYONE CAN FLY By Sharon Romelczyk

26 HOW TEAM SPORTS BENEFIT STUDENTS WITH SPECIAL NEEDS By Helene Schorr, M.S. and Erin Vlasak, M.S.

EP Q&A

30 THE GAME ACCESSIBILITY SPECIAL INTEREST GROUP (GA-SGI) OF THE INTERNATIONAL GAME DEVELOPER’S ASSOCIATION (IGDA)

26

Interview by Vanessa Ira

FEATURES 32 ENGINEERING A VERY SPECIAL PROJECT Photos provided by University of Tulsa • Taken by Erik Campos

36 NEW RESOURCE: HOW TO RAISE FUNDS FOR CHILDREN WITH DISABILITIES By Melanie Davis

38 TRANSITION BEGINS THE FIRST DAY OF SCHOOL By Rachel Ezekiel-Fishbein

42 INDEPENDENT EDUCATIONAL EVALUATIONS: WILL THE REAL REGS STAND UP? By Steve Imber, Ph.D.

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44 SOCIAL VILLAGE/ SOCIAL THINKING By Lauren Agoratus, M.A.

47 10 WAYS TO REACH OUT TO THE AUTISM COMMUNITY By Kimberlee Rutan McCafferty

ON OUR COVER Summer can be a challenging time for children with special needs and their parents. In the Annual Summer Fun & Recreation issue, EP suggests some activities that don’t require weeks of planning, a small loan or traveling further than your backyard. Special section begins on page 24.

42 eparent.com | EP MAGAZINE • June 2015 1

CONTENTS

JUNE 2015 VOLUME 45 ISSUE 6

DEPARTMENTS ANCORA IMPARO

4

LOOK AT US WE’RE WALKING By Rick Rader, MD

6

NEW PRODUCTS HEALTHY CHOICES, HEALTHY LIFESTYLE

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NUTRITION LABELS: FACT OR FICTION? By Barbara B. Mintz, MS, RD MASS MUTUAL SPECIAL CARE

10 FINANCIAL MATTERS TO CONSIDER WHEN A FAMILY MEMBER’S DEATH IS EXPECTED 14 WHAT’S HAPPENING AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

20

14

F R O M O U R FA M I L I E S … T O Y O U R FA M I L I E S

MILITARY SECTION

16 HEALTH IS SOMETHING WE DON’T HAVE By H. Barry Waldman DDS, MPH, PHD, Steven P. Perlman DDS, MSCD, DHL (Hon), and Misha Garey, DDS LIVING WITH A DISABILITY

19 THE BEST LAID SCHEMES By Jerry Levinson ORGANIZATION SPOTLIGHT

20 PARENTS SEE ADULT CHILDREN TAKE WING IN L’ARCHE By Bethany Keener

58 PRODUCTS & SERVICES

50 SUMMER VACATION TIPS MILITARY FAMILIES SHOULD KNOW ABOUT By Jennifer Woodworth, PSY.D

MILITARY SECTION 50 SUMMER VACATION TIPS MILITARY FAMILIES SHOULD KNOW ABOUT By Jennifer Woodworth, PSY.D. MILITARY LIFE

54 DECIDING TO LIVE ON OR OFF THE INSTALLATION AS A COUPLE OR FAMILY

MILITARY LIFE

54 DECIDING TO LIVE ON OR OFF THE INSTALLATION AS A COUPLE OR FAMILY 56 THE FALLEN HERO GUARDIAN ANGELS PUZZLES & CAMO

57 SAYING OUR GOODBYES By Shelly L. Huhtanen

56 THE FALLEN HERO GUARDIAN ANGELS PUZZLES & CAMO

57 SAYING OUR GOODBYES By Shelly L. Huhtanen

2 June 2015 • EP MAGAZINE | eparent.com

The contents of EP magazine’s Military Section are not necessarily the official views of, or endorsed by, the United States Government, the Department of Defense, or the Department of the Army. The appearance of advertising adjacent to the Military Section does not constitute endorsement by the United States Government, the Department of Defense, or the Department of the Army of the products or services advertised.

Information and Support for the Special Needs Community

VOLUME 45 ISSUE 6 Editor-In-Chief

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ESTABLISHED 1971 Rick Rader, MD

Contributing Writer/Editor

Vanessa B. Ira

President, CEO & Publisher

Joseph M. Valenzano, Jr.

Production, Ad Traffic Manager Human Resources Manager Director of Circulation & Business Development Art Direction & Design Resource Guide Specialist Webmaster

Stefanie Valenzano Lois Keegan Hamilton Maher FoxPrint Dennis Dusevic Ron Peterson

Exceptional Parent magazine was founded in 1971 by Maxwell J. Schleifer, PhD Subscriber Services Exceptional Parent 6 Pickwick Lane, Woodcliff Lake, NJ 07697

Customer Service/New Orders Email: [email protected] or toll free: 800-372-7368 ext. 234

Publishing & Editorial Office 6 Pickwick Lane, Woodcliff Lake, NJ 07697 Fax (201) 746-0179

Exceptional Parent (ISSN 0046-9157) is published monthly 11 times per year plus the special January Annual Resource Guide by ep World, Inc., dba Exceptional Parent Magazine, 6 Pickwick Lane, Woodcliff Lake, NJ 07677. Internet address: http://www.eparent.com. Digital access: www.eparentdigital.com. All rights reserved. Copyright ©2015 by ep World, Inc. Exceptional Parent™ is a registered trademark of ep World, Inc. Postmaster: Please send address changes to: Exceptional Parent, 6 Pickwick Lane, Woodcliff Lake, NJ 07677. Any applicable periodical postage paid at Johnstown, PA and additional mailing offices (USPS 557-810). Basic annual subscription rate is $19.95 per year for EP Digital. Annual subscription rate for Canada is also $19.95 (U.S. funds only); all other foreign countries $24.95 (U.S. funds only). Subscriber Service: Direct all inquiries & address changes to: Exceptional Parent, 6 Pickwick Lane, Woodcliff Lake, NJ 07677. Customer Service/New Orders: E-mail: [email protected] or call toll free: (800) 372-7368 extension 119. Exceptional Parent. Back issues incur a charge of $10.00 each and depend upon availability, call (800) 372-7368. Agreement # 1420542

EP EDITORIAL ADVISORY BOARD

Joan Earle Hahn, DNSc, RN, CS, CDDN Assistant Adjunct Prof., Univ. of California, Los Angeles School of Nursing; Past President, Developmental Disabilities Nurses Association

Ronald G. Blankenbaker, MD Univ. of Tennessee Health Science Center, Chattanooga, TN; President, American Association on Health and Disability Henry G. Chambers, MD Pediatric Orthopedic Surgeon, Rady Children's Hospital; Prof. of Clinical Orthopedic Surgery, Univ. of California, San Diego Stephen L. Defelice, MD Founder and Chairman of the Foundation for Innovation in Medicine (FIM) Mahlon Delong, MD Chair, Dept. of Neurology, Emory Univ., Atlanta, GA

Matthew Holder, MD President of the American Academy of Developmental Medicine & Dentistry; Global Medical Advisor for Special Olympics International, Louisville, KY David Hirsch, MD Medical Director at UnitedHealthcare Jerry Hulick, GA Emeritus Massachusetts Mutual Life insurance Company, Special Care Planning Mary M. Keller, ED.D President and CEO, Military Child Education Coalition, Harker Heights, TX

Steven P. Perlman, DDS, MScD, DHL (Hon) Clinical Prof., Boston University, School of Dentistry, Boston, MA

Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY Barbara Mintz MS, RD Vice President of Healthy Living & Community Engagement, Barnabas Health, West Orange, NJ

Esther Schleifer, MSW Clinical Social Worker, Boston, MA Howard Shane, PhD Director, Communications Enhancement Center, Children’s Hospital, Boston, MA Jo Waldron President and Co-founder of the Able Kids Foundation and Partner at Brain Basket, LLC, Fort Collins, CO

Frank J. Murphy President and CEO, EP Foundation for Education, Atlanta, GA Kathryn O’Hara, RN Epilepsy Nurse Clinician, Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University, Richmond, VA

Steven M. Wolf, MD Director of Pediatric Epilepsy at Beth Israel Medical Center, New York, NY; Director of Pediatric Neurology at St. Lukes Roosevelt Medical Center, New York, NY

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EP magazine neither endorses nor guarantees any of the products or services advertised in the magazine. We strongly recommend that readers thoroughly investigate the companies and products being considered for purchase, and, where appropriate, we encourage them to consult a physician or other credentialed health professional before use and purchase.

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Note from the Editor-in-chief: EP World, Inc. advocates for the dignity of all citizens with disabilities including the use of “people first language” where possible. We do not normally edit articles and submissions that do not reflect this language, therefore, at times, readers might see alternative nomenclature. — Rick Rader, MD

Gary Liguori Fellow of the American College of Sports Medicine (ACSM); Department Head of Health and Human Performance, University of Tennessee Chattanooga, Chattanooga, TN

Endorsed & AL ME DICI NE

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Mark L. Batshaw, MD Prof. and Chairman, Dept. of Pediatrics, The George Washington Univ. Medical Center, Washington, DC

John M. Pellock, MD Prof. and Chair, Division of Child Neurology, Virginia Commonwealth Univ., Vice President of the American Epilepsy Society (AES)

Bernard A. Krooks, ESQ Littman Krooks LLP, New York, NY

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Saadi Ghatan, MD Assistant Prof. of Neurological Surgery, Division of Pediatric Neurological Surgery, Columbia College of Physicians and Surgeons, Columbia Medical School, New York, NY

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Lauren Agoratus Parent, NJ state and MCH Region II (NJ, NY, PR, VI) Coordinator for Family Voices, NJ CCAN (Caregiver Community Action Network), National Family Caregivers Association, Mercerville, NJ

eparent.com | EP MAGAZINE • April 2015 3

ANCORA IMPARO

RICK RADER, MD

■

EDITOR-IN-CHIEF

“Look at us, we’re walking! Look at us, we’re talking! We who’ve never walked or talked before…” “Look at us, we’re laughing. We’re happy and we’re laughing. Thank you from our hearts, forever more.” “There are so many other children, Who only speak with a silent prayer. For those who haven’t been so lucky, We hope and pray you will always care.” “Someday they’ll be walking. Someday they’ll be talking, Imagine walking to the candy store. But the fight has just begun. Get behind us everyone, Your dollars make our dreams come true. Thanks to you.”

Look At Us, We’re Walking The 2014 MDA telethon (named “Show of Strength”) raised $56.9 million dollars while the ALS Ice Bucket Challenge raised $100 million dollars in one month.

Yikes! Anyone who grew up in the 60’s and had a television set can easily recall that earworm of lyrics from the song “Look at us, We’re Walking,” the theme song (along with “You’ll Never Walk Alone”) of the Jerry Lewis Annual Labor Day Muscular Dystrophy Association (MDA) telethon. The MDA Telethon was more than a fundraiser, it was a family affair and, like the March of Dimes before it, changed the landscape for raising money for disabilities. Running from 1956 until Lewis was unceremoniously dismissed as National Chairman of the MDA in 2010, the show went from a 24 hour marathon to a twohour show its last two years and was completely dropped in 2015. The MDA officially announced that, “The new realities of 4 June 2015 • EP MAGAZINE | eparent.com

television viewing and philanthropic giving” make it the right time to pull the plug. And they are probably right especially in light of the landmark “ALS Ice Bucket Challenge.” The 2014 MDA telethon (named “Show of Strength”) raised $56.9 million dollars while the ALS Ice Bucket Challenge raised $100 million dollars in one month. This viral phenomenon drew everyone, from average citizens, to celebrities nominating each other to donate to the cause (Lou Gehrig’s Disease) or pour a bucket of ice over their heads. The fundraising community knew that the flag had been placed in new terrain. The digital telethon was not only intensified but it didn’t require a

parade of patients with amyotrophic lateral sclerosis. It was the parading of children with muscular dystrophy that raised eyebrows, even as the amount of money being raised increased, year after year. Jon Wiener (from the blog “The Notion”) remarked, “Every year it was the same. Jerry did his telethon shtick, parading little kids in wheelchairs across the Las Vegas stage, making maudlin appeals for cash, alternatively mugging and weeping, and generally claiming to be a friend to the doomed.” Lewis raised over a billion dollars for muscular dystrophy research. And perhaps it’s fitting, since we provided 17 lines of copy to share the lyrics of

PHOTO COURTESY WWW.MDA.COM

WHAT’S HAPPENING

“Look at Us, We’re Walking,” maybe we cular dystrophy and announced, “God should devote that many to listing the goofed, and it’s up to us to correct His misresearch that resulted from those yearly takes.” In the first Labor Day Jerry Lewis degrading parades. Telethon without the comedian, the • Adenoviral vectors Muscular Dystrophy Association lost 14 • Plasmid vectors million dollars in its fundraising efforts. • Myoblast transplantation That’s a lot of test tubes and beakers, not to • Stem-cell therapy mention legions of researchers who had to • Chimeric oligonucleotides halt their efforts. • Gentamicin therapy In the conclusion • RAAV Vectors of the research arti• Antisense It was the parading of children cle, “Advances in oligonucleotides D u c h e n n e • Utrophin upregu- with muscular dystrophy that M u s c u l a r lation raised eyebrows, even as the Dystrophy Gene • Mdx mouse amount of money being raised Therapy” (van • CXMD/GRMD increased, year after year. Jon Deutekom et al, golden retriever dogs Wiener remarked, “Every year Nature Genetics Review) the • Hypertrophic it was the same. Jerry did his authors remark, feline muscular dystrophy model telethon shtick, parading little “Steady progress in understanding the • Myogenic trankids in wheelchairs across the MD Gene and its scription factor function has point• Systemic delivery Las Vegas stage, making ed to several innovof allogeneic maudlin appeals for cash, ative therapeutic murine or alternatively mugging and strategies. It now human MDSCs. weeping, and generally seems reasonable • Delivery of to expect that the exogenous funcclaiming to be a friend to the next decade will tional dystrophin doomed.” see great advances • Vessel-associated in this field. mesoangioblasts Considering its efficiency and relative sim(MABs) plicity, the antisense approach seems the • Hybridizing and blocking targeted prenext candidate for clinical trials.” mRNA motifs Promising clinical trials made possible Okay, okay enough high falutin biomed- by basic research, funded in part by a ical references to make a point. The point comedian that might have missed the boat, is that Lewis’ patronizing, disrespectful but did his best to insure there was room and manipulative use of children with on the ship for his “kids.”• muscular dystrophy resulted in some heavy duty research. Of course the age old question of, “Do the “means justify the ends?” come into play. Laura Hershey, one of the activists who ANCORA IMPARO organized annual protests outside the In his 87th year, the artist Michelangelo telethon, remarked that the pitch was (1475 -1564) is believed to have said “Ancora always for “Jerry’s kids.” But “two thirds of imparo” (I am still learning). Hence, the name for my monthly observations and comments. the clients of the Muscular Dystrophy — Rick Rader, MD, Editor-in-Chief, EP Magazine Association were adults, and they didn’t Director, Morton J. Kent Habilitation Center like being referred to as “Jerry’s kids.” Orange Grove Center, Chattanooga, TN In 1973, Jerry held up a child with mus-

GENETIC SUPPORT FOUNDATION LAUNCHES WEBSITE Genetic Support Foundation’s mission is to improve the quality of healthcare by providing up-to-date, objective genetic information to patients, providers and healthcare organizations, supporting those in need of genetic services and facilitating the adoption of best genetic practices.

Dr. Jon Wolff, medical geneticist and Founder and President of Genetic Support Foundation states, “I am proud of the mission of Genetic Support Foundation and the integrity of our Board and Staff in creating thoughtful education resources that will help patients, families and providers navigate the evolving genetic testing landscape.” Genetic Support Foundation’s initial website launch is focused on prenatal genetics resources. In the near future, content will be expanded to other areas including cancer, newborn screening and personalized genomics. Heidi Lindh, MS, CGC, Executive Director of Genetic Support Foundation, adds, “In addition to launching our website, we are thrilled to announce the availability of our educational video that we developed to help patients make informed decisions about noninvasive prenatal testing. This video comes at a time when there is a real need for objective information, and we are hopeful that this video will be a useful tool for providers and patients.” • Learn more about the Genetic Support Foundation: www.geneticsupportfoundation.org [email protected] eparent.com | EP MAGAZINE • June 2015 5

NEW PRODUCTS

FREE SPEECH VERSION 1.31

RAMI Rami is designed for children for use by children with visual perceptual, neurological and fine motor disabilities. It is a motivating way to exercise and improve ocular motor skills of visual tracking and scanning, visual endurance, and eye-hand coordination. Children are in control of all the switches that move all the levers that control access to all the pathways of this colorful maze game. Move gates correctly

and the colored marbles will fall into the matching colored slot. Miss a gate and who knows where the ball will drop. Multiple colors. Warranty: Please contact manufacturer for details. POCKET FULL OF THERAPY Telephone: 800-736-8124 Fax: 732-441-1422 Web: www.pfot.com Email: [email protected]

MONKEY MIX UP Monkey Mix Up is designed for use by children and adults working on improving their visual perception including attention to detail, discrimination, directionality, spatial organization, imaging, etc. This bright monkey filled collection of 20, two sided pieces is actually 10 puzzles in one. You start by placing any "ground piece" in the bottom left corner of the plastic base and continue matching pieces edge to edge, row by row until the puzzle is complete. There are 10 different ground pieces, so 10 differ-

Free Speech is an Android application (app) that serves as an Augmentative and alternative communication (AAC) program for individuals who have difficulty speaking. At the push of a button, users can play recorded sounds or have text read aloud with the Android’s built-in text-to-speech (TTS) feature. This customizable sound board can be personalized to fit the user’s preferences. With Free Speech, users can create and edit buttons; display text, images, or both on a button; link buttons together to create sentences in just a few taps; select how many buttons to display on the screen at any given time; and use the type-to-talk keyboard interface whenever it is preferred. Size: 421k. Requires Android 2.3 and up. GOOGLE PLAY STORE Web: play.google.com/store

ent puzzles can be made. Comes with an image of each completed puzzle and uniquely designed "stepped base" that make it easy to organize, remove and rearrange puzzle pieces. It also give the complete puzzle an engaging 3D effect. Color: Multicolored. Warranty: Please contact manufacturer for details. POCKET FULL OF THERAPY Telephone: 800-736-8124 Fax: 732-441-1422 Web: www.pfot.com Email: [email protected]

ABLEDATA The ABLEDATA database of assistive technology and rehabilitation equipment contains information on more than 30,000 products for persons of all ages who have a physical, cognitive, or sensory disability. Products are chosen for these pages by the ABLEDATA staff based on their specific applicability to or design for children who have disabilities. ABLEDATA, operated by New Editions Consulting, Inc., is funded by the National Institute on Disability and Rehabilitation Research (NIDRR) under contract number ED-OSE-13-C-0064. For more information on these and other assistive devices, or to submit product information for the database (and possible inclusion on this page), contact: ABLEDATA, 103 W. Broad Street, Suite 400, Falls Church, VA 22046; phone: 1-800-227-0216; TTY – 703-992-8313; website: www.abledata.com; email: [email protected]; twitter: https://twitter.com/AT_Info; Facebook: https://www.facebook.com/abledata. 6 June 2015 • EP MAGAZINE | eparent.com

NEW PRODUCTS SUPER SORTING PIE

TURTLE AND RABBIT Turtle and Rabbit is a tactile book designed for children with low vision. A retelling of the classic tale about the race between the tortoise and the hare. The tactile illustrations allow the child to follow the progress of the race by tracking from left to right along the raised lines of Turtle and Rabbit. Includes a storyboard and symbols for retelling the story. Recommended ages: Pre-K to 2nd grade. Braille option.

Super Sorting Pie is designed for use by children working on improving their arm and hand strength, while reinforcing early concepts of sorting by attribute. (i.e. color, number, shape, and category). Set comes with large, durable, 8 3/4 inch diameter plastic pie shell, removable divider, 60 substantial fruit counters in 5 colors, 3 double sided sorting cards, 2 jumbo tweezers and Activity Guide. Top crust acts as bowl to hold counters while playing and as lid when it is time to cleanup. Color: Multiple colors. Warranty: Please contact manufacturer for warranty details. POCKET FULL OF THERAPY Telephone: 800-736-8124 Fax: 732-441-1422 Web: www.pfot.com Email: [email protected]

AMERICAN PRINTING HOUSE FOR THE BLIND, INC. 1839 Frankfort Avenue PO Box 6085 Louisville, KY 40206 Telephone: 800.223.1839 Email: [email protected] Fax: 502-899-2274 Web: www.aph.org

SPANGLE TANGLE: PLAY AND EXPLORE KIT Spangle Tangle kit is designed for children with low vision. Spangle Tangle pro-

SNAPTYPE APP FOR OCCUPATIONAL THERAPY SnapType is an app designed for children with dysgraphia, poor grasping and fine motor skills who struggle with writing. Students can complete school worksheets with the help of an iPad or iPhone. With SnapType, students can take a picture of their worksheets, or import worksheets from anywhere on their device. They can then use their iOS device keyboard to add text to these documents and print, email, or share their creations. Language: English, Dutch and Spanish. Size: 9.5 MB. APPLE Web: www.apple.com Email: [email protected]

vides opportunities for learners to improve visual and tactile attention, communication, and creativity. Through specially designed activities, the learner develops motor, problem-solving, cognitive, selfcare, social, and pre-braille skills. Anyone can learn with the Spangle Tangle, but it is designed specifically for children who are blind and experience difficulty grasping and holding objects. The product includes the Tangle Stand, which is a support stand that allows learners to explore and play with the toy without it falling off a wheelchair tray, and three Tube Stands to use to

play games and create sculptures. The kit includes 36 Spangle Tangle segments (4 bumps, 4 spirals, 4 tire treads, 4 alligator, and 20 smooth), 3 Plastic Tubes – short, medium, and tall, 3 Tube Stands, and 1 Tangle Stand. AMERICAN PRINTING HOUSE FOR THE BLIND, INC. 1839 Frankfort Avenue PO Box 6085 Louisville, KY 40206 Telephone: 800.223.1839 Email: [email protected] Fax: 502-899-2274 Web: www.aph.org

eparent.com | EP MAGAZINE • June 2015 7

HEALTHY CHOICES, HEALTHY LIFESTYLES

BARBARA B. MINTZ, MS, RD

Nutrition Labels: Fact or Fiction? It is important to understand how easy it is to be persuaded by the food industry and how their labeling can affect our food behaviors.

We are faced with having to make choices every day that will affect our health. Shopping and buying food is one of those importance decisions. But it isn’t always easy to make the right choice. With so many products on the market and so much information, it is very difficult to know what the right choice actually is. Which is better, grass-fed or grass-finished? Natural or organic? What does cage-free really mean and why is it healthier? What is the difference between low-fat and reducedfat? What is the difference between lowsodium and reduced-sodium? Is there is a difference? Terms like gluten-free, fat-free, all natural and GMO free on a label imply healthy benefits, but if you look at the fine print on many of these products you will see refined sugars, trans fats and chemical preservatives that are anything but healthy. It is becoming very clear that processed foods are hazardous to our health, yet the food industry continues to market these foods as healthy, through their labeling practices. It is important to understand how easy it is to be persuaded by the food industry and how their labeling can affect our food behaviors.

BUYER BEWARE Selling processed food is a big business. As with most business ventures, food products rely on advertising and public relations to increase the revenue. Unfortunately, the advertising strategies often mislead consumers by not stating the complete facts and by adding information that would make the food seem to be good health food, when in fact it is not. Food labels on the front packaging are misleading and, unfortunately, a good way to get us to buy foods that aren’t so healthy. Some commonly used claims are: • Healthy • Low-calorie • Low-fat, reduced-fat and fat free • Low-sodium, sodium-free • Gluten-free • Natural 8 June 2015 • EP MAGAZINE | eparent.com

Other commonly used buzz words that entice us… “natural”, “made with whole grains” and “multigrain”, and “trans fat-free” or “no high-fructose corn syrup.” When we see these on the front of a package, we assume that these food products are indeed what they claim they are. However, many are just words to entice you to buy. They usually are not telling the whole story. In fact, many claims are not truthful at all.

LET’S LOOK AT A FEW CLAIMS Natural vs. organic: These terms should only mean that there are no artificial flavors, no added food dyes, or other synthetic substances. Most consumers think that when a food is labeled as “natural” it is also organic. Organic is a term that is regulated and has many different variations. The label “100% organic” means that all ingredients and processing aids are organic. The term organic means that 95% or more organic ingredients were used and “made with organic” means that at least 70% of the ingredients are organic. The words “natural” and “organic” are not synonymous. Whole vs. not so whole grains: A whole grain can be another example of a misleading food label claim. Always look for food products that are made of 100% whole grains, which should be stated clearly on the list of ingredients. Do not settle for products that are labeled as being made with whole grains and multigrain because the amount of whole grains used could be only a pinch. A good choice will be made of entirely whole grain products. Fat and sugar: You should also keep in mind that food products that claim to be trans fat-free, or have no high-fructose corn

syrup are not necessarily healthy choices. They may still be loaded with large amounts of saturated fat, or other unhealthy sugar. You need to look closely at the entire list of ingredients. If it says “dextrin” or “dextrose” or any other word ending in “ose”, it has sugar. If the product has hydrogenated oils, it has trans fats. An educated consumer is a healthy consumer.

READ THE FINE PRINT... AND UNDERSTAND WHAT YOU’RE READING Consumers need to check the back labels instead of the front of the package before buying any product. The Nutrition Facts Panel of food products is the only information consumers should check out. It is not as enticing and it still needs to be clearer but it is accurate. It includes facts about the serving size as well as amounts of certain nutrients and calories. It has also been regulated by the Food and Drug Administration. With that being said, you still need to pay close attention and understand what is being said. Remember, the more food you eat, the more money the food industry makes. For example, pay close attention to the stated serving sizes listed. The amount listed per serving is often totally unrealistic, and nothing like what most people would actually eat or drink. For instance, if a soda or juice is listed as 1/2 cup serving size, that is a mere 4 ounces, and most bottles would have anywhere from 10 to 20 ounces. If you drink the entire bottle, you might be eating four to five times as much as is stated on the package. Soup is another good example. An eight ounce can of soup claims to have two servings. Most people eat at least one cup, or eight ounces of soup. Another section of the label to fully understand is the “percent daily value section” or

READ ALL ABOUT IT The Nutrition Facts Panel includes facts about the serving size as well as amounts of certain nutrients and calories. It has also been regulated by the Food and Drug Administration.

DV. The percentages listed are relative to a 2000 to 2500 calorie daily intake. It is not the percentage of the food item. There are some math calculations to go through to get to this number. For instance, if a candy bar has 200 calories per serving and the fat percentage is 10%, it is not 10% of 250. It is 10% of 2000. This would make the fat grams much higher in this item than you might think; 10% of 250 is equal to about 3 grams (there are 9 calories in one gram of fat). The fat gram number is much higher when it is 10% of 2000 calories. That number is actually 22 grams of fat. That is a big difference when you are trying to keep you fat intake down.

BE A SMART SHOPPER Next time you go shopping, be armed with knowledge and information. You and your family will be healthier for it. Remember not to “buy in” to the clams on the front of the package. Read the back of the package! SERVING SIZES • Be sure to look at the number of servings in the container. Even small containers may have more than one. If you eat the whole container, then make sure you multi-

ply the nutrition values by the number of servings listed. CALORIES • The calories listed are for one serving only. Keep in mind your total daily calorie needs. “Calories from fat” tells how many fat calories there are in one serving. Don’t rely on the percentages to tell you that. Use this to help you choose foods that are high in the nutrients you should have and low in the nutrients you should stay away from. • Remember that 5% daily value (or DV) or less is low, and 20% or more is high. You will not find a %DV for trans fat sugars or protein. They do list them, however in grams, at the bottom of the label and remember it is for a diet of about 2000 to 2500 calories. FAT AND SUGAR • Limit your fat intake to about 65 grams a day. Limit saturated fats and stay away from trans fats or hydrogenated oils. • Limit your sugar intake to about 22 grams daily and make sure you are eating enough fiber. Aim for about 20 to 35 grams. Compart the number of grams of sugars to the number given for total carbohydrate. Some food has natural sugar like fruit and milk products and, unless your choice is

one of these foods, the sugar will be added. SODIUM • Limit your sodium intake to about 2,000 to 2,400 milligrams daily. For those with heart disease, the target number is 1,500 mgs. This is very hard to do in our fast, convenient and processed food environment. Remember, a low-sodium item is considered to have about 140 mgs per serving. If the front of the package state low or reduced sodium, check to see how many milligrams it has on the back.

THE BOTTOM LINE With our processed food supply and the food industry trying to sell us food that is not healthy, it is a challenge to ensure we are feeding our families the healthiest food we can. Choosing more whole foods and less processed foods are still the safest options when it comes to knowing what you are eating.• HEALTHY CHOICES, HEALTHY LIFESTYLES Barbara Mintz, MS, RD, Vice President of Healthy Living and Community Engagement for Barnabas Health, New Jersey.

eparent.com | EP MAGAZINE • June 2015 9

Information of interest to people with disabilities and other special needs and their families.

Financial Matters to Consider When a Family Member’s Death is Expected A family member’s death and the grief we feel Issues regarding is difficult to endure, especially if the death is estate settlement Do you live in a common law property or a sudden and shocking. But sometimes we know community property state ? Your state’s laws in advance a person’s life will soon end. regarding ownership of property and debts 5

“Expecting a death doesn’t minimize grief,” says Leizer Gewirtzman1, CPA, ChSNC, who is a Special Care Planner2 with Lee, Nolan and Koroghlian, LLC3 in Saddle Brook, New Jersey, a general agency of Massachusetts Mutual Life Insurance Company (MassMutual). “However, it allows time to review finances and plan ahead. It can help you manage the transition.”

Effects on income Do you and your spouse each have income (through employment, social security retirement, or disability benefits)? Does your child with special needs receive government benefits? How will your household income and expenses be affected if one of you dies? Consider the challenges you may face. Now’s the time to create or review a family financial strategy. Social security benefits (based on a spouse’s, a parent’s, or an individual’s personal work record) for you and your family members may help. Learn what social security offers and what you may qualify to receive. “When a person dies,” explains Gewirtzman, “his or her spouse and children may qualify for monthly survivor benefits. Additionally, if you have an adult child with special needs and can show the child was disabled prior to age 22, that child may also qualify for Social Security Disabled Children’s Disability Benefit (formally known as Disabled Adult Child Benefit or DAC). Talk to a representative at your local Social Security office for more information.4 “Take time to review life insurance policies you may have,” suggests Gewirtzman. “If you have life insurance coverage on the family member whose death is expected, determine how the death benefit is paid out. Most policies offer a lump sum payment, but many people don’t realize some insurance companies offer the option of leaving the benefit in a beneficiary account with a guaranteed interest rate, which may be higher than what you might earn in a savings account (Interest earned is taxable). You can then regularly withdraw a certain amount to help with monthly expenses, make withdrawals only occasionally as you want or need, or withdraw the full remaining balance.” If you have such a policy, call your agent or a representative of the insurance company to learn more.

Financial Planning Update Supported by MassMutual Life Insurance Company

10 June 2015 • EP MAGAZINE/www.eparent.com

will determine your legal obligations when your spouse dies. Talk to your tax advisor, estate attorney, and/or financial professional, such as a Special Care Planner, to find out what steps you should take now to minimize your financial burden. “Give some thought to who the executor of the estate will be,” says Gewirtzman. “You may want to handle this yourself, though this will be an emotional time for you, and naming a responsible, trusted individual as executor may better suit your needs.” The executor (or administrator) settles the deceased’s financial matters, which can range from simple to complicated, depending on a person’s financial situation, personal wealth, and debt. “Pre-planning could simplify estate settlement,” says Gewirtzman, “Creating a will is a good first step. If a person dies without one (dies intestate), the court appoints an administrator to settle the estate, which may not be in your best interest.” Estate settlements will vary by state when a person dies intestate. A portion of the assets may be awarded to the spouse with the rest divided equally among the children, if any. “In this case, a child with special needs who inherits assets could jeopardize eligibility to receive certain government benefits,” explains Gewirtzman. This is also a good time to learn more about the federal tax filings you (or the executor) will be required to make – primarily, the decedent’s last income tax return, the estate’s income tax return, and the estate’s tax return. “The current law allows a person to exempt up to $5.43 million from estate tax liability,” says Gewirtzman. “What many people don’t know is that this exemption is portable, meaning the exemption amount allowed for a recently deceased person can be transferred to a spouse. The spouse will then be eligible to exempt up to $10.86 million dollars from estate taxation.” An accountant or the executor/administrator must file a timely estate tax return even if no estate taxes are due to enable the exemption amount to be portable.

If you have a special needs trust for a family member with special needs and that family member is the one whose death is expected, consider these two things. First, if the trust was to be funded at a later date (such as with proceeds from a life insurance policy), meet with your legal and financial experts to change any related documents since the trust will not be needed. Second, if the trust is already funded, determine what type of trust you’ve established and how funds will be distributed after your family member’s death. “There are first party (or person), third party, and pooled trusts, and each has unique rules.” explains Gewirtzman. “Medicaid may require repayment before funds are distributed from a first party trust. A pooled trust may keep funds for use by other trust beneficiaries. It’s smart to review the rules of your trust with your legal advisor and know if or how funds will be distributed.”

Other issues to consider Credit cards – Depending on the State of residency when a person dies, credit card accounts for which the person is the sole owner may be closed. If other individuals are named as additional cardholders with credit privileges on those accounts, they may no longer be able to use those accounts. “Review your credit card accounts to determine how you’ll be affected,” says Gewirtzman. “If you’re a joint owner on accounts, get your name removed so you aren’t liable for the debt. Individuals may benefit by having their own accounts and building their own good credit history.” Taxation – Our tax system is progressive, meaning that our income is broken into segments with each progressively higher segment taxed at a progressively higher tax rates. But the segments and tax rates for married individuals and single/widowed individuals are structured differently. For example, currently married couples pay 10% on the first $18,450 of taxable income in 2015 while a single/widowed person pays 10% on the first $9,225. “Ultimately, a single person could pay more in taxes. Take this into account and adjust the withholding amount from your paycheck to avoid surprises at tax time,” suggests Gewirtzman. continued on page 12

www.eparent.com/EP MAGAZINE • June 2015 11

Co-signed loans – When a borrower dies, the co-signer on the loan is liable for payment. Review any loans you may have (personal, auto, student, etc.) so you’ll know how you’ll be affected. If you’re leasing a vehicle, read your contract to determine how it might be affected. Beneficiary designations – Meet with your financial professional to review any accounts and policies that require a named beneficiary. Taxation rules may vary depending on who’s named. For example, with a qualified retirement account the rules may be more lenient if a spouse rather than a child is named, and less lenient if a trust is named. Additionally, an inheritance may cause a child with special needs to jeopardize his or her current or future eligibility for certain government benefits. “When it comes to your legacy,” says Gewirtzman, “take time to review everything. Carefully decide which assets go to which person.” Utility bills – Are any utility bills, rewards memberships, retail shopping memberships, or similar accounts in the name of the family member expected to die? “Change ownership or add a surviving family member’s name now,” says Gewirtzman. “You don’t want to find out later that you can’t, for example, cancel or add a premium channel on your current cable account because it’s not your account.”

Talk with advisors who can help You have a wealth of professionals you can turn to for help, whether you’ve already been working with them to create a financial strategy or not – an accountant, your banker, attorneys skilled in estate planning and in serving the special needs community, and financial professionals such as Special Care Planners. It’s important to know that even when you’re under emotional strain, these advisors can help you understand your options so you can make the informed choices. The information provided is not written or intended as specific tax or legal advice. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. Individuals involved in the estate planning process should work with an estate planning team, including their own personal legal or tax counsel.

1 www.massmutual.com/connect-with-us/agencies/lee-nolan--koroghlian-llc/leizer-gewirtzman Gewirtzman has an office in New City, New York, and currently serves clients in New York and New Jersey. 2 The Special Care Planner, a title used by MassMutual financial professionals, who have received advanced training and information in estate and tax planning concepts, special needs trusts, government programs, and the emotional dynamics of working with people with disabilities and other special needs and their families. The certificate program was offered by The American College in Bryn Mawr, PA, exclusively for MassMutual financial professionals. Additionally, a designation of Chartered Special Needs Consultant (ChSNC), which evolved from the certificate program, is now offered through the American College for financial professionals. MassMutual financial professionals who have completed the certificate program, or received the ChSNC designation can use the Special Care Planner title. 3 www.leenolan.com 4 This article is provided for your general information. Please rely on the facts you receive directly from the Social Security Administration’s website or its representatives as your most accurate source. Visit www.ssa.gov or call 1-800-772-1213. 5 As of June 2015, Arizona, California, Idaho, Louisiana, Nevada, New Mexico, Texas, Washington, and Wisconsin are community property states. Learn more about community and common law property at http://family.findlaw.com/marriage/whats-mine-is-mine-what-s-yours-is-mine-who-owns-what-in.html.

12 June 2015 • EP MAGAZINE/www.eparent.com

* The Special Care Planner, a title used by MassMutual financial professionals, who have received advanced training and information in estate and tax planning concepts, special needs trusts, government programs, and the emotional dynamics of working with people with disabilities and other special needs and their families. The certificate program was offered by The American College in Bryn Mawr, PA, exclusively for MassMutual financial professionals. Additionally, a designation of Chartered Special Needs Consultant (ChSNC), which evolved from the certificate program, is now offered through the American College for financial professionals. MassMutual financial professionals who have completed the certificate program, or received the ChSNC designation can use the Special Care Planner title. A Special Care Planner through MassMutual’s SpecialCareSM program can assist parents in drafting Letters of Intent and can help make a difference in the quality of life for an individual with special needs, their caregiver and other family members. Through SpecialCare you will learn valuable financial strategies, identify financial strategy solutions, access vital information, and meet certified specialists who will work with you and your professional advisors – your banker, accountant or financial planner, lawyer, social workers and health care providers – to review your financial picture and offer options to fit the needs of each situation. For more details, visit MassMutual’s website at http://www.MassMutual.com/specialcare, or call 1-(800)-272-2216.

About MassMutual Founded in 1851, MassMutual is a leading mutual "http://www.massmutual.com" life insurance company that is run for the benefit of its members and participating policyholders. The company has a long history of "http://www.massmutual.com/aboutmassmutual/ financialinfo/strength" financial strength and strong performance, and although dividends are not guaranteed, MassMutual has paid dividends to eligible participating policyholders consistently since the 1860s. With "http://www.massmutual.com/productssolutions/ individualsfamilies/producttype/lifeinsurance/wholelife" whole life insurance as its foundation, MassMutual provides products to help meet the financial needs of clients, such as "http://www.massmutual.com/productssolutions/individualsfamilies/producttype/lifeinsurance" life insurance, "http://www.massmutual.com/productssolutions/individualsfamilies/producttype/disabilityincome" disability income insurance, "http://www. massmutual.com/productssolutions/individualsfamilies/producttype/longtermcare" long term care insurance, "http://www.massmutual.com/ retire/plansponsors" retirement/401(k) plan services, and "http://www.massmutual.com/productssolutions/individualsfamilies/producttype/annuities" annuities. In addition, the company’s strong and growing network of financial professionals helps clients make good financial decisions for the long-term. MassMutual Financial Group is a marketing name for Massachusetts Mutual Life Insurance Company (MassMutual) and its affiliated companies and sales representatives. MassMutual is headquartered in Springfield, Massachusetts and its major affiliates include: Babson Capital Management LLC; Baring Asset Management Limited; Cornerstone Real Estate Advisers LLC; The First Mercantile Trust Company; MassMutual International LLC; MML Investors Services, LLC, Member "http://www.finra.org/" FINRA and "http://www.sipc.org/" SIPC; OppenheimerFunds, Inc.; and The MassMutual Trust Company, FSB. The information provided is not written or intended as specific tax or legal advice. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. Individuals involved in the estate planning process should work with an estate planning team, including their own personal legal or tax counsel.

For Denise, this is the start of a new chapter. We were there to turn the page.

SourceAmerica® is dedicated to finding employment opportunities for people with significant disabilities. Our Pathways to Careers program positioned Denise as a teacher’s aide—a perfect fit for her caring personality and love for children. Learn more at SourceAmerica.org.

The American Dream at Work.

LURASIDONE IMPROVES FUNCTION

IN PATIENTS WITH AUTISM SPECTRUM DISORDER TORONTO, ONTARIO, CANADA — Lurasidone has been proven effective in patients with autism spectrum disorder. This outcome of a retrospective chart review of the drug in seven patients from a developmental disability clinic was presented at the 168th Annual Meeting of the American Psychiatric Association from May 16 to 19. Aadhar Patil, MD, of St. Lukes/Roosevelt Hospital, New York, explained that his group’s report is the first on the use of lurasidone, a second-generation orally administered atypical antipsychotic, in patients with autism spectrum disorder. Risperidone and aripiprazole have been studied in developmentally disabled and autistic patients and are approved for irritability associated with autism, but studies of newer agents are limited. Dr Patil and colleagues studied seven patients with autism spectrum disorder from their developmental disability clinic, all who had concomitant intellectual disability and severe behavioral issues characterized by aggression, impulsivity, and selfinjurious behavior. One case was comorbid

with cerebral palsy and one with seizure disorder. The sample included one female and six male cases. Mean patient age was 20 (range, 11 – 27) years. Mean length of time on lurasidone was 9.7 (range, 2 – 34) months.

ENCOURAGING RESULTS: Overall, 86% of patients with autism spectrum disorder treated with lurasidone showed improvement in clinical function. Mean titrated total daily dose was 29 (range, 10 – 60) mg. Cases were reviewed for Clinical Global Impression Severity Scale (CGIS) score before initiating lurasidone and

Clinical Global Impression Improvement (SCII) Scale score and Clinical Global Impression Efficacy Scale (CGIE) score after initiating lurasidone. Mean CGIS was 5.4 (range, 5 – 6), which correlates with severe illness, and mean CGII of the sample was 2.9 (range 2 – 4), which correlates with minimal improvement. Two patients were much improved, four minimally improved, and one unchanged after clinical review by a board-certified psychiatrist. A similar pattern arose using the CGI-E. Mean CGIE score was 2.4 (range, 1 – 4), which correlates with minimal to moderate therapeutic efficacy. One patient showed no improvement, three minimal efficacy of the drug, two moderate efficacy, and one marked efficacy. Overall, 86% of patients treated with lurasidone showed improvement in clinical function. Dr Patil concluded that lurasidone may function as an alternative compound for impulsivity, aggression, and self-injurious behavior in patients with autism spectrum disorder who have failed approved compounds. Published in Primary Care News, May 18, 2015

Mom2Mom Helpline Launches National Expansion of Mom2Mom om2Mom, a 24-7 peer counseling helpline for caretakers of children with special needs operated by Rutgers University Behavioral Health Care, has announced its nationwide expansion. The announcement was made during Mom2Mom’s annual Mother’s Day celebration in May in which callers to the helpline meet their counselors for the first time. Since 2010, Mom2Mom – the 24/7 peer-support helpline for mothers of children with special needs directed by University Behavioral Health Care, Rutgers Biomedical and Health Sciences – has helped moms care for their own mental health. It has made more than 70,000 contacts to date. The helpline is unique in that calls are answered by mothers of special needs children who have been trained as peer counselors, based on a model of “reciprocal peer support.” Through a partnership with the New Jersey Department of Children and Families, peer counselors provide various resources, host support groups throughout the state, or just lend an empathetic ear.

M

14 June 2015 • EP MAGAZINE | eparent.com

Mom2Mom also helps women who have fewer opportunities for assistance, such as those with adult children with disabilities who have “aged out” of the system and members of the Spanish-speaking community. The helpline is already helping mothers in 34 states (Alabama, Arizona, California, Colorado, Connecticut, Florida, Georgia, Idaho, Illinois, Indiana, Kansas, Kentucky, Louisiana, Massachusetts, Maryland, Maine, Michigan, Minnesota, Missouri, Mississippi, North Carolina, New Mexico, Nevada, New York, Ohio, Pennsylvania, South Carolina, South Dakota, Tennessee, Texas, Virginia, Vermont, Washington, and Wisconsin). For more information, visit: http://bit.ly/1QeAMIl; Mom2Mom website: http://mom2mom.us.com/

Sexuality Workshops for Parents of Children with Special Needs Increase in Demand Discussing

sexual

behaviors, personal space boundaries or hygiene and self-care during puberty with a child is difficult enough for any parent, but possibly even more perplexing for a parent of a child with developmental disabilities on the autism spectrum. A new sexuality workshop for parents of special needs children, created and presented by Michelle Brill, MPH, Assistant Professor in the Department of Family and Community Health Sciences at Rutgers University Cooperative Extension was recently held for parents at Deron School in Union, NJ to assist them in handling these sensitive issues.

Michelle did this in a comprehensive way that didn’t intimidate them or make them feel embarrassed, in fact, quite the opposite, our parents came away with the realization they could empower their child to be safe. The workshop provides parents with tips on comfortably addressing sex education with children with special needs from early childhood to adolescence and adulthood. Topics covered included curriculum benchmarks, modifying behaviors, vulnerability, personal care, social skills and empowering children to stay safe. “When you're dealing with a child where repetition and routine mean everything, it's important you teach appropriate adult boundaries and specific behaviors

TOUGH TALK: Discussing sexual development, behaviors, personal space boundaries or hygiene and self-care during puberty with a child is difficult enough for any parent, but possibly even more perplexing for a parent of a children with developmental disabilities or who are on the autism spectrum. early in life in order to avoid the difficulties of having to re-teach or substitute new behaviors later on,” said Ms. Brill, “This can be as simple as setting rules about closing a bathroom door to not allowing the child to hug or touch people they meet.” Brill created the program seven years ago when she worked as a health teacher at another special needs school and she is seeing growing demand for these workshops. “Statistics have shown that children with developmental disabilities are more likely to be abused, especially females. Shockingly, over 50 percent of girls with developmental disabilities will be abused at one point of their life,” Brill added. “The workshop provides our parents with tips on how to keep their children safe,” said Ken Alter, Director of Deron

School. “Michelle did this in a comprehensive way that didn’t intimidate them or make them feel embarrassed, in fact, quite the opposite, our parents came away with the realization they could empower their child to be safe.” Deron plans to host more workshops in the future. • To learn more about the sexuality workshops, please contact Michelle Brill at [email protected] or 609-989-6831 For information on Deron Schools please contact Lori Alter at [email protected] or 908-206-0444

eparent.com | EP MAGAZINE • June 2015 15

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

Health is Something WE Don’t Have Bulletin: “Measles vaccine reduces death from other diseases.” Having the measles disease somehow disrupts the immune system to combat other diseases, which the child may already have had sometime in the past. “Not only is measles extremely contagious and deadly, it creates a kind of immune forgetfulness.” (May 2015) 1 BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON), AND MISHA GAREY, DDS n a 2004 EP magazine commentary, we suggested the idea that “health is something you don’t have.”2 The intent of this statement was to consider the reality that when we are well, we take it for granted. It is only when something “goes wrong” that we consider our “lack of health.” It is like the battery in our car; it only comes to our attention when the car doesn’t start. The emphasis in that first article was the impact of the limitations on individual persons with special needs. The consequences of considering our health only when we don’t have it has taken on new meanings during the recent years, as our nation and other countries consider the impact of the refusal by individuals to accept proven standard procedures to assure our health and that of our children.

I

BACKGROUND In 1998, a British physician, Andrew Wakefield and co-authors, published in the journal "Lancet" a study in which he suggested the existence of "a new variant of autism" associated with intestinal inflammation. He proposed the administration of the measles,

mumps and rubella (German measles) (MMR) vaccine as a possible cause of the inflammatory process. “The hypothesis suggested by Wakefield led to a drastic drop in vaccination coverage in the UK and to the failure to achieve adequate levels of immunization in many countries, with a consequent increase in the incidence of measles and its complications. Wakefield’s work stimulated a broad discussion in the scientific community and many studies conducted over the next few years contradicted the research results of the English physician. In 2004, journalist Brian Deer conducted an accurate investigation that revealed how the Wakefield research presented many irregular aspects and was performed with predominantly economic objectives. In 2010, Wakefield was expelled from the General Medical Council, while the ‘Lancet’ retracted the paper.” 3 The Wakefield episode has been a factor in the increased number of families in the United States refusing to have their children inoculated against an array of viral diseases. A record number of measles cases during 2014, with 644 cases from 27 states were

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan. 16 June 2015 • EP MAGAZINE | eparent.com

reported to the Centers for Disease Control. This was the greatest number of cases since measles elimination was documented in the U.S. in 2000. (see Figure 1)4

Figure 1. Measles Cases & Outbreaks, January 1 to February 7, 2015 4

170 Cases

4

reported in 17 states and the District of Columbia: Arizona, California, Colorado, Delaware, Georgia, Illinois, Michigan, Minnesota, Nebraska, New Jersey, New York, Nevada, Pennsylvania, South Dakota, Texas, Utah, Washington

representing 89% of reported cases this year

Outbreaks U.S. Measles Cases by Year

Provisional data reported to CDC’s National Center for Immunization and Respitory Diseases

“Most of the 170 cases (74%) are part of a large, ongoing multistate outbreak linked to an amusement park in California.” 4 In addition: • The majority of people who contracted measles were unvaccinated. • Measles is still common in many parts of the world including some countries in Europe, Asia, the Pacific and Africa. • Measles can spread when it reaches a community in the U.S. where groups of people are unvaccinated.” 4

first polio vaccine was licensed.6 • A graph for Haemophilus influenzae type B vaccine (Hib), indicates that the incidence of invasive Hib disease had decreased from 40–100 per 100,000 children in 1980 at the time of the introduction of the vaccine, down to fewer than 1 per 100,000 in 1990.7 • Similarly, the drop in the number of pneumococcal disease cases started to drop in 2000 with the introduction of the vaccine.8 2. “Vaccines do NOT work” “They may create a temporary increase in antibodies for a particular disease, but this does not equate to immunity to disease.” 5 Response: see response to first allegation. 3. “The very first vaccine was a disaster” “The history of smallpox vaccine demonstrates that the first vaccine resulted in an increase in the disease and created additional health consequences including syphilis and death.”5 Response: The history of smallpox holds a unique place in medicine. One of deadliest disease known to humans is also the only human disease to have been eradicated by vaccination. The first vaccination (in 1798) for small pox (using vaccine derived from cowpox) laid the foundation for this accomplishment. The anti-vaccination list goes on claiming that vaccines are highly profitable for the pharmaceutical industry, However:8

REASONS FOR NOT VACCINATING The internet is filled with any number of sites which “document” the rationale for refusing to vaccinate youngsters and the not so young. For example: “10 Reasons Not to Vaccinate” 5 1. “Vaccines have never been proven safe or effective” “Scientific double-blind studies have never been conducted on a vaccine to determine their safety. Effectiveness cannot be determined unless one is knowingly exposed to the disease entity following vaccination. Only antibody production is measured. See how pharmaceutical companies hide the truth from parents.” 5 Response: The vaccination stimulates the production of antibodies as the body’s natural method to develop resistance and protection from a particular disease. Measuring antibody levels provides an indicator of the effectiveness of creating the needed antibody level. A review of the history of any vaccine-preventable disease demonstrates that virtually always, the number of cases of the disease starts to drop when a vaccine is licensed. For example: • The measles vaccine was licensed in 1962. That’s when the number of cases started to decline. Measles didn’t completely disappear after 1993. There have just been too few cases to show up on this graph.6 • If the drop in disease was due to hygiene and sanitation, one would expect all diseases to start going away at about the same time. But if one were to look at the graph for polio, one would see the number of cases start to drop around 1955 – the year the

In addition, the anti-vaccination list goes on these claims that vaccines contain toxic poisons and chemicals, unvaccinated children enjoy superior health and the only way to create true lifelong immunity is through natural exposure to the disease. 5 eparent.com | EP MAGAZINE • June 2015 17

REASONS FOR VACCINATING “Vaccination can mean the difference between life and death. In the US, vaccine-preventable infections kill more individuals annually than HIV/AIDS, breast cancer, or traffic accidents. Approximately 50,000 adults die each year from vaccine-preventable diseases in the US.”9 • Immunizations can save your child’s life. • Vaccination is very safe and effective. “Serious side effects following vaccination, such as severe allergic reaction, are very rare. The disease-prevention benefits of getting vaccines are much greater than the possible side effects for almost all children.10 • Immunization protects others you care about. “Children in the U.S. still get vaccine-preventable diseases. In 2010 the U.S. had over 21,000 cases of whooping cough reported and 26 deaths, most in children younger than 6 months.10 • Immunizations can save your family time and money. “Some vaccine-preventable diseases can result in prolonged disabilities and can take a financial toll because of lost time at work, medical bills or long-term disability care.”10 • Immunization protects future generations. “By vaccinating children against rubella (German measles), the risk that pregnant women will pass this virus on to their fetus or newborn has been dramatically decreased, and birth defects associated with that virus no longer are seen in the United States. If we continue vaccinating now, and vaccinating completely, parents in the future may be able to trust that some diseases of today will no longer be around to harm their children in the future.”10

IT SHOULD BE: “HEALTH IS SOMETHING WE DON’T HAVE We live in an unsterile world surrounded by an infinite number of unseen life forms that potentially will sicken or destroy us. Some of these life forms reside in our gut and are essential for our survival. In fact, these “bugs” reside in our own family members and our neighbors. In addition, within 24 hours, individuals from virtually any part of the world can arrive in our backyards and bring a surprise hodgepodge of life forms seldom, if ever seen in our communities. It is an understatement to say that we (especially youngsters and adults with special needs) are potentially vulnerable to an onslaught of these unwelcome visitors. Yes, no aspect of life is without potential danger. We drive, fly, sail, eat food grown in all parts of the world, ski, sky dive and (most important) we take our health for granted - until something happens. Preventive efforts are not always perfect, but they give us a chance. When it comes to diseases, we cough and sneeze on each other (claiming “I’m no longer contagious”). When it comes to vaccination, we have advanced greatly since 1798, when Dr. Edward Jenner used the cowpox virus to shield us from smallpox. We have learned that efforts to prevent the spread of disease works best with “herd immunity” (the protection of populations from infection which is brought about by the presence of increased numbers of immune individuals. It is the extension of the protection imparted by an immunization program beyond vaccinated to unvaccinated individuals). We need to think collectively rather than individually. “The need is to realize that health is something we don’t have, rather than something I don’t have.”

COSTS

ABOUT THE AUTHORS:

The price of public health: prevention isn’t free, but it’s cheaper than the alternative. For example: • $.10 - $.28: Cost of a dose of combined measles, mumps, and rubella vaccine • $142,452: Estimated direct cost to the public health infrastructure of containing one case of vaccine preventable measles (2004)

H. Barry Waldman, DDS, MPH, PhD - Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail:[email protected] Steven P. Perlman, DDS, MScD, DHL (Hon) - Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine, Private pediatric dentistry practice – Lynn MA. Misha Garey, DDS is Director of Dental Services at the Orange Grove Center.

• $1.50: Additional cost of eating healthy instead of eating unhealthy • $245 billion: Annual cost of diagnosed diabetes in U.S. (2012) including direct medical cost and lost productivity • $5-$30: Average cost of a seasonal flu shot • $30.4 billion: Cost to U.S. employers from lost work days due to flu in 2012-2013season • $150-200: Average cost of a seatbelt • $69 billion: Savings in medical care, lost productivity and other injury related costs as a result of seatbelt use in U.S. (2010) • $1,185: Average cost of a colonoscopy in the U.S. (2013) • $24-40,000: Life time treatment cost for colorectal cancer in average risk adults in U.S. (2011) 11 18 June 2015 • EP MAGAZINE | eparent.com

References 1. Ossola A. Measles vaccine reduces deaths from other diseases: another reason vaccines are so important. (Popular Science) May 7, 2015.Published originally in Science Translational Medicine) Web site: http://www.popsci.com/measles-vaccine-reduces-deaths-other-infectious-diseases Accessed May 8, 2015. 2. Waldman HB. Health is something you don’t have: a commentary. Exceptional Parent Magazine, 2004:34(4):56-57. 3. Battistella M, Carlino C, Dugo V, et al. Vaccines and autism: a myth to debunk? Igiene e Sanita Pubblica 2013;69(5):585-596. 4. Centers for Disease Control and Prevention. Measles cases and outbreaks. Web site: http://www.cdc.gov/measles/cases-outbreaks.html Accessed March 3, 2015. 4. Vactruth.com 10 reasons not to vaccinate. Web site: http://vactruth.com/2014/12/10-reasons-not-tovaccinate Accessed March 4, 2015. 5. Vaccines.gov Web site: http://vaccines.gov Accessed March 9, 2015. 6. Center for Disease Control and Prevention. Disease listing Disease (Including Hib). Web site: http://search.cdc.gov/search?subset=&query=Disease+listing&utf8=%E2%9C%93&affiliate=cdc-main Accessed March 9, 2015. 7. Fortune Magazine. March 1, 2015, p22. 8. National Foundation for Infectious Diseases. Top reasons to get vaccinated. Web site: http:6./www.nfid.org/about-vaccines/reasons Accessed March 4, 2015. 9. Vaccines.gov. Five important reasons to vaccinate your child. Web site: http://www.vaccines.gov/more_info/features/five-important-reasons-to-vaccinate-your-child.html Accessed March 4, 2015. 10. Ruderman R, Tolbert E. The price of public health. University of Michigan School of Public Health. What does it take to change the world 2014;30(1):26-27.

0615frontmatter_4_05 ed desk 6/1/15 7:50 AM Page 19

LIVING WITH A DISABILITY

JERRY LEVINSON

The Best Laid Schemes My GP diagnosed the problem as a pinched nerve, likely caused by use of the STS machine that had forced my spinal column and vertebrae into a position they had not been in in years.

The title of this column

WHAT COULD GO

is taken from a line in Robert Burns’ 1786 WRONG? poem “To a Mouse” that reads “The best I used the STS machine laid schemes of mice and men often go twice a week, sometimes awry.” Truer words were never spoken more, for a couple of months, when describing my experience using the figuring it could be my salvaSit-to-Stand (STS) machine featured in tion. Although uncomfortable March’s non-Pulitzer-prize-winning col- to the point of being painful, it umn “My Physical Therapist and the ‘Iron forced me to use muscles I Maiden.’” hadn’t used for 25 years. I was As I explained in my March column, the STS machine uses hydraulics to allow a disabled individual who cannot walk to stand nearly upright. A strap-like sling is affixed to the user’s lower back and another sling is placed beneath the user’s buttocks. Eyelets at the end of both slings are then attached to one of three bolt-like appendages connected to each arm of the machine. The STAND & DELIVER: In this promotional shot from the manufacturer user’s feet are of the STS machine, the hydraulic motor slowly lifts the user into placed in specific an upright position, and the slings and knee guards work to areas on the bottom force him or her to stand and support his full weight. plate of the device, and his or her knees are placed in con- also told the machine was good for my leg toured plastic guards that face the user’s bone density, which surely must have suflegs as he or she prepares to stand. The fered from sitting in a wheelchair for so hydraulic motor then slowly lifts the user many years. into an upright position, and the slings By using the STS machine, I hoped that I and knee guards work to force him or her might be able to build up my leg muscles to to stand and support their full weight. As the point that, with the aid of parallel bars, the user slowly stands, the eyelets on the I might be able to take a few steps. And, if ends of the slings are placed on other I were able to take a few steps, with a little bolt-like appendages, forcing the user to determination, I might be able to take a few stand more and more erect. Photos of the more, and so on and so on. Hey, you never gizmo appear in last month’s column. know. It was, I thought, worth a try.

PHOTO COURTESY WWW.INVACARE.COM

USE OF STS RESULTS IN PINCHED NERVE About two weeks ago, I awoke with a terrible pain in my left hand. Because of the pain, I couldn’t use the hand to grasp anything. At first I thought it might be caused by my MS which, in the past, had caused many different and sometime bizarre types of aches and pains in my body. But my neurologist said it didn’t sound like MS to him chiefly because the pain was intermittent and would dissipate after about 10 minutes, only to recur more intensely a few minutes later. The neurologist recommended I see my general practitioner. My GP diagnosed the problem as a pinched nerve, likely caused by use of the STS machine that had forced my spinal column and vertebrae into a position they had not been in in years.

FUTURE USE OF THE STS MACHINE The doctors tell me the effects of the pinched nerve can be eliminated through physical therapy. He also tells me that I shouldn’t abandon my use of the STS machine.• LIVING WITH A DISABILITY This column has a simple purpose, but a difficult goal: discuss issues that affect the lives, well being and state of mind of those who must live and cope with a disability and do so in a humorous way whenever possible. This isn’t an easy thing to do, since there’s certainly nothing funny or humorous about being disabled, or in the difficulties and obstacles that those with chronic disabilities encounter daily. However, I’ve personally found that humor has to a great extent helped me cope with my disability (I’ve had Multiple Sclerosis for 45 years and use a wheelchair), and I hope this column helps others in the disability community do so as well.

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ORGANIZATION SPOTLIGHT

Parents See Adult Children Take Wing in L’Arche With 18 communities consisting of one or more homes in the United States, L’Arche provides support for daily living and a community of belonging where people with and without intellectual disabilities share their lives together. BY BETHANY KEENER • PHOTOS PROVIDED BY L’ARCHE hen Donna and Manny Ganzarain were told their fouryear-old son Mark was autistic, Donna was confused. It was 1976, and she had never heard the word. She thought the doctors were telling her Mark was artistic. But when Manny’s brother heard the diagnosis he told them about a place he had visited in a small French village. It was called L’Arche – which rhymes with “marsh” and means the ark – and it was a place where people with and without intellectual disabilities lived together as peers. He had met the founder, Jean Vanier, and told them that if the L’Arche homes in the United States were anything like what he’d seen in France, it was the place for Mark. “At that time we were puzzled by everything and everything scared us,” Donna said. It was far too early to start thinking about where Mark would live as an adult. They just needed to know how to handle L’Arche enables people with and the day-to-day chal- without disabilities to share their lives in communities of faith and friendship. lenges they faced. When Mark was 16, Community members are transformed through relationships of mutuality, the Ganzarain family respect, and companionship as they moved from New live, work, pray, and play together. Orleans to Mobile, Alabama. There was a L’Arche community there, and when Jean Vanier came to speak at a local church, Donna went to hear him. Jean hadn’t set out to start an international organization. He had simply responded with compassion when he visited the French institutions of the early 1960s, where people who had intellectual disabilities were sent to be forgotten. There he saw 80 men living together in dormitories made of concrete blocks with high walls surrounding them. The men had no work; they spent their days walking in circles. Vanier was struck by the anguish and sadness he

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saw there, but he also sensed God’s presence. It was there that he met Raphaël Simi and Philippe Seux. In 1964, Jean asked for help from his family and friends to buy a small home and invited Raphaël and Philippe to move in with him. “All I wanted was to create a community of which they would be the center and give them a family, a place of belonging where all aspects of their beings could grow,” Jean writes in An Ark for the Poor, one of 30 books he has written about L’Arche in the past 50 years. And so the term “core member” was coined to describe the people who had intellectual disabilities and around whom the home and community was formed. Those without intellectual disabilities were called “assistants.” There were no “residents” because everyone resided together under one roof, sharing meals and household responsibilities, having fun, and finding small ways to show one another their love. From their life together emerged a radical way of thinking about disability altogether. The most vulnerable people who had at times been regarded as a burden, became teachers and mentors, sharing their wisdom, welcome, sense of humor, and a whole host of other talents that might not have otherwise been discovered. When word got out about this unique new way of living, others were quick to try it. Within five years, L’Arche communities were begun in North America and India. Today, a total of 147 L’Arche communities can be found in 35 countries on all six habitable continents. L’Arche USA consists of 18 communities in both rural and urban settings, and each community consists of one or more homes – and in some cases a day program – where people with and without intellectual disabilities share their lives together. L’Arche communities are communities of faith, with spiritual practices that reflect the traditions of their members. The L’Arche charter states: “Each community member is encouraged to discover and deepen his or her spiritual life [including those who have no religious affiliation] and live it according to his or her particular faith and tradition.”

COMMUNITY OF BELONGING: (Above) Manny and Donna Ganzarain see their son Mark changing in ways they never expected since he came to L’Arche Mobile. (Right) Cheryl Fannin receives a Mother’s Day card from her son, Lance, who lives in L’Arche Heartland in Overland Park, Kansas. The focus on the dignity and value of each person, along with loving relationships with assistants, is what many parents say makes L’Arche so special. heryl Fannin, whose son Lance lives in L’Arche Heartland (Overland Park, Kan.) says the level of commitment and involvement of L’Arche assistants is different from a group home where staff come in for eight-hour shifts. “They’ve held out for his highest good. They try different things and he’s continued to grow. Where I might have looked at him and thought this is all you can do – they see he can do more.” Indeed, this is what Jean Vanier had in mind. He writes that an assistant’s role is like that of a midwife: to bring forth and help foster life, to let it develop and grow according to its own natural rhythm. Assistants in L’Arche are not there to make people with disabilities somehow “normal,” but to help them grow toward maturity. Cheryl isn’t the only parent who has noticed the assistants. Susan Englemann’s 27-year-old daughter Sarah also lives in L’Arche Heartland. “It becomes clearer and clearer to me all the time that Jean Vanier’s vision of inviting people to move in to his house to live with them instead of to take care of them is what makes L’Arche different,” Susan said. The assistants who live with Sarah are also in their 20s, and Susan sees that they truly want to be in relationship with Sarah. They live as any other 20-something housemates, collaborating on decision-making, sharing responsibilities, and having fun together. They celebrate, but don’t coddle her. Not all L’Arche assistants come straight out of college. Others

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come later in life when looking for new direction. They come from every academic field imaginable, from social work to mathematics, philosophy to economics, English to political science. Their faith traditions and political views are equally varied. Yet they all come with an open heart and willingness to develop relationships with adults who have intellectual disabilities. Once they arrive in L'Arche, assistants receive training specific to the community and home they will be supporting. Support is tailored to each core person and often evolves over time as needs change. Assistants learn how to properly give medication, assist with physical therapy and personal hygiene, implement behavior eparent.com | EP MAGAZINE • June 2015 21

FAMILY AND FAITH: (Left) Sarah Englemann, right, of L’Arche Heartland celebrates with her brother Michael and sister-in-law Ashley. (Right) At L’Arche Boston North, John Anton retains his independence while putting his mother Janice’s worries about isolation and loneliness to rest. support plans, and prepare foods for a variety of dietary needs. And, because L’Arche is a licensed provider, it is all carefully overseen by outside case managers. When Vanessa Hair’s 27-year-old daughter Kendyl wanted to move to L’Arche Tahoma Hope (Tacoma, Wash.), Vanessa was scared. “Not only was I losing the ability to care for her on a dayto-day basis, I was placing my deaf daughter into an environment where no one knew how to sign,” Vanessa said. “The caring environment and celebration of core members’ gifts was the intrinsic piece that allowed me to trust.” Less than two years later, Vanessa knows that trust was well placed. Assistants learned to communicate with Kendyl, and her definition of family now includes members of the L’Arche community. This sense of community was what Janice Anton felt her son John was missing prior to coming to L’Arche Boston North two years ago. He lived alone or with a roommate, and while his neighbors and landlords were always kind, she worried about him being isolated. “He might not have admitted to loneliness,” Janice said, “But he certainly experienced it.” Now, Janice knows John has a community that will be there for

TRANSFORMING HEARTS L’Arche founder Jean Vanier still lives in the original community in Trosly, France. In 2015, he won the Templeton Prize for his life’s work of creating communities where all people are accepted and valued for who they are.

PHOTO BY JOHN MORRISON; TEMPLETON PRIZE

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him when she’s gone. Donna, Manny, and Mark Ganzarain observed all this at L’Arche Mobile when they began visiting the community for meals every month or so. But every time they visited, their friend and core member Harry reminded them there were no rooms available. Because core members experience such excellent care and enjoy a high quality of life it is rare for L’Arche homes to have openings. Each community’s process of welcoming a new core member varies based on local funding and regulations but, typically, involves a process of discernment about the potential core person’s desire to be part of a community. It often starts slowly, with visits and an overnight or two to determine whether it will be a good fit for everyone. For Mark, the timing was right when he was 42. For 15 years, Harry told him there were no rooms. Then, Harry passed away. Through conversations with L’Arche Mobile’s executive director, Marty O’Malley, the family decided it was time for Mark to make L’Arche his home. Donna went home and cried. After years of caring for Mark it was a big change for her, but she quickly began to see him grow and change. “We found out that we were smothering him,” Donna said. “He needed to move forward, and when he moved forward – oh, things changed for him.” Previously, Mark wouldn’t even sit at the table with others at mealtime. Now, Donna says, he plans the menu, says the blessing, and even goes to restaurants. She feels like a mother bird who pushed her baby out of the nest so he could fly. “He’s flown like we never expected him to.” • ABOUT THE AUTHOR: Bethany Keener is communications manager for L’Arche USA. For more information visit www.larcheusa.org

Leading the Charge for Compassionate Care: A Day for Intellectual and Developmental Disabilities Residential Services Providers Sunday, October 4, 2015 Offers 7.0 CEUs

Register for ID/DD Day at AHCAconvention.org

8:00am - 8:30am

Breakfast

8:30am - 9:00am

AHCA/NCAL ID/DD Update: Mark Parkinson, President & CEO of AHCA/NCAL, and Renee Naylor, AHCA’s ID/DD Committee Chair

9:00am - 10:15am

Root Cause Analysis: Investigating To Understand The “Why’s” When The Unexpected Happens Speaker: Mary Jann, RN, BA, Director of Developmental Programs at the California Association of Health Facilities, Sacramento, CA Session Description: ID/DD administrative and clinical teams are continually faced with investigating and understanding a variety of events. This session will introduce processes that can be used in identifying and understanding the contributing factors or causes of a system failure that has led to an adverse event or near miss. In addition to learning about common pitfalls in conducting event investigations, participants will be introduced to the “Five Why’s,” a simple problem-solving technique that involves looking at any problem and determining the root cause and practice applying those techniques using “real life” case scenarios.

10:15am - 10:30am

Break

10:30am - Noon

CMS Update on the ICF/IID Program Speaker: Susan LeBlanc, RN, BSN, Nurse Consultant, Centers for Medicare & Medicaid Services (CMS) - Region VI-Dallas, TX Session Description: Hear from a CMS expert on the Agency’s work on the ICF/IID program. Have the opportunity to discuss those regulatory areas that appear to be the most challenging for you as a provider, and get your questions answered.

Noon - 1:15pm

Working Lunch Moderators: AHCA’s ID/DD Committee Chair, Renee Naylor, and AHCA’s Senior Director of Not for Profit & Constituent Services, Dana Halvorson Session Description: Participants will have the opportunity to discuss pressing issues and ask questions impacting ID/DD providers and the individuals they care for.

1:15pm - 2:30pm

The Three Pillars of Health Care Strategy and Performance: Quality, Compliance and Data Metrics Speaker: Lisa Thomson, BS, NHA, Chief Marketing and Strategy Officer of Pathway Health Services, White Bear Lake, MN Session Description: The current of the health care industry is moving at a swift pace. This lively presentation will provide leaders with key strategies focusing on quality outcomes, internal compliance initiatives and utilizing internal data to make informed decisions. Quality measurement is needed to understand and improve performance, especially in this changing health care environment. This session will arm participants with the necessary tools to stay “afloat” and achieve positive outcomes.

2:30pm - 2:45pm

Break

2:45pm - 4:15pm

Closing Keynote Title: Intentional Culture - Keeping the Meaning and Purpose in our Work Speaker: Charles Bloom, MBA, NHA, Chief Strategic Officer for Marquis Companies/Consonus Healthcare, Milwaukie, OR Session Description: With the future of health care in flux, have you been able to focus on your company culture? Intentional Culture is not just a program, it is how we do what we do and it is authentic. This session provides the background of intentional culture, how to demonstrate it, and how it can create meaning and purpose in our work. Each and every one of us can make a difference when we all share aligned values. Even though there are many strategic initiatives and programs to focus on during Health Care Reform, without intentional culture, you will not survive. In this session, hear testimonials from residents and staff about the programs that allow them to be a part of the company culture. Intentional culture allows you to keep the meaning and purpose in your work, without it, nothing else matters.

4:30pm - 5:30pm

AHCA/NCAL Welcome Reception A Special Thanks to Our ID/DD Day Sponsors

GENETIC ALLIANCE

BY SHARON ROMELCZYK reedom.” When asked to describe the experience of paragliding in one word, Chris Santacroce chose “Freedom.” Mr. Santacroce is the founder of Project Airtime (www.projectairtime.org), a nonprofit organization located in Utah that provides adapted tandem paragliding rides to kids and adults with a range of special needs, free of charge. Chris and his team have provided hundreds of individuals with the opportunity to lift high in the sky and feel freedom from any mobility, balance, or other issues they may face on the ground. Chris began providing free paragliding rides about 15 years ago, beginning with friends and their children, some of whom had special needs. In 2013, he formed the nonprofit organization, Project Airtime, which runs purely on donations and volunteers so that everyone who wants to paraglide is able to. Everyone – that’s a key part of the mission. Chris believes that everyone deserves the opportunity to paraglide and is committed to making that possible for those who are interested. The organization has even been able to offer scholarships to a few people per year, to offset the travel costs to come to Utah and participate in the therapeutic flying experience. The “therapeutic flying experience” can last anywhere from a couple of minutes to a half an hour, depending on how long the person wants. Project Airtime has worked with kids with special

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needs, people with brain and spinal cord injuries, chronic illness, elderly individuals, and individuals through the Make A Wish® and Wounded Warriors® programs. They have found that individuals feel empowered, rejuvenated, and even inspired by the experience. “As far as physical activities go, there are very few that a person with a wheelchair can be on par with everyone else, and this is one of them. When they’re in the sky, everyone is on the same level,” Chris said. Paragliding is different from other sports in that it is not about strength. Individuals are taught to command the aircraft and feel light and in control in the sky. Chris Santacroce is a career paraglider who was even a Red Bull athlete for some time. One particular experience led him to create Project Airtime and offer this experience to others. As a passionate, thrill-seeking athlete, Chris spent a lot of time doing stunts. Santacroce was known for a trick called the “Death Spiral.” The pilot circles low and drags the wingtip on the ground before straightening up for a normal landing. One fateful day, Santacroce let the wing tip drag in a wheat filed and the subsequent rough landing caused him a spinal cord injury. He wondered if he’d ever be able to walk again. Chris was lucky to make a 100 percent recovery, but the experience has forever changed his life and has helped him define his life’s work. Instead of focusing on doing

GENETIC ALLIANCE The world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. 24 June 2015 • EP MAGAZINE | eparent.com

FREE AS A BIRD: Paragliding is different from other sports in that it is not about strength. Individuals are taught to command the aircraft and feel light and in control in the sky. stunts, he now focuses his time on empowering others to be able to do things they dream of doing. Chris also owns SuperFly, Inc. a paragliding school in Salt Lake City, Utah. Chris has been working on various techniques and equipment designs for years to enable safe flight for people with disabilities and other special needs. Project Airtime does not advertise their services, but they do work with a few local organizations to spread the word. They are available to fly every single day of the year, and Chris says, “I even live right on the takeoff spot!” They use a special adaptive chair to make it a comfortable experience for everyone. In the past year, they have provided services to 40 individuals and about 30 of

their family members. They have done training events in Seattle and other cities to help train more paragliders and are planning similar events in the future. As a long-term goal, they hope to be able to offer more scholarships to individuals. While the services are free and open to everyone who is interested, distance and transportation is a factor for many. Last year they provided a scholarship to someone to travel across the country with their family and have this experience. This year, Project Airtime provided a scholarship to a man who is a paraplegic to learn to paraglide by himself. Chris hopes to raise awareness about the value of adapted sports programs like Program Airtime so that more individuals can participate and make their dreams a reality.•

For more information on Project Airtime, visit ProjectAirtime.org Check out Project Airtime on Facebook, YouTube, Twitter (@ProjectAirtime) and Instagram or email Chris directly at [email protected]

ABOUT THE AUTHOR:

ANTON FLIES!: Anton showed up rockin‘ his Super Man sweatshirt, fully stoked to fly. www.youtube.com/watch?v=rq7_dU64_7w PHOTO COURTESY OF PROJECTAIRTIME.COM

Sharon Romelczyk serves as a Program Manager at Genetic Alliance, overseeing public education efforts aimed at increasing access to genetic services and the quality of genetic services. eparent.com | EP MAGAZINE • June 2015 25

HOW CAN WE ENCOURAGE AND MOTIVATE SPECIAL NEEDS STUDENTS, ESPECIALLY THOSE ON THE AUTISM SPECTRUM, TO MAKE SOME TYPE OF EXERCISE OR PHYSICAL ACTIVITY PART OF THEIR WEEKLY ROUTINE?

HOW

Team Sports BENEFIT STUDENTS WITH SPECIAL NEEDS

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BY HELENE SCHORR, M.S. AND ERIN VLASAK, M.S.

any students with special needs have had a hard time throughout their schooling when it comes to physical

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education, especially organized team sports. This negative feeling towards sports and physical activity can carry over through adulthood.

vate autistic students to exercise would be to start these students off in a place of confidence as opposed to fear. As mentioned earlier, team sports throughout ones school career can be very stressful (especially for a student with special needs). If a student is afforded the opportunity to learn and play these games within a video game setting such as Wii where they are still expected to be active, they will be pairing sports with a positive experience. The TECHNOLOGY RULES hope would be for the student to no longer One way to motivate autistic students to feel frustrated and increase their level of anxious about physical activity may THERE MAY BE PEOPLE sports/exercise but be to draw upon their THAT HAVE MORE TALENT positive and excited love and comfort with THAN YOU, BUT THERE’S NO EXCUSE FOR ANYONE about it. electronics. By definiTO WORK HARDER THAN Quite simply, tion, social skills are a YOU DO. “Success begets sucdeficit of their disorder. - DEREK JETER cess” – Anonymous According to the DSM V The hope would be (American Psychiatric Publishing 2013), “People with ASD tend to that this, in turn, will improve not only the have communication deficits, such as students’ physical heath but their overall responding inappropriately in conversa- mental and emotional health as well. tions, misreading nonverbal interactions, or having difficulty building friendships TO CHOOSE OR NOT appropriate to their age.” Participating in a TO CHOOSE team sport, therefore, which often involves Another effective way to motivate way being the last one chosen for the team and to students on the spectrum to increase then requires them to understand the their level of physical activity can be to social nuances and cues required to get offer them choices. More “traditional” along with their team members, can be a games such as baseball and football are very stressful situation for autistic individ- great, and many students may jump at the uals. For this reason, many children and chance to participate in them. However, in adults with autism are much more com- our many years working with special fortable in the “virtual world.” needs students, we have seen students The advent of game systems such as Wii “thrive” when given a choice. A choice can has helped these individuals to increase allow the student to feel the freedom to do their physical activity while still allowing what they want, thereby allowing them to them the comfort of utilizing electronics. feel like they have some control in their Most of these games can be played individ- lives. When you think back to gym class in ually or with extra players. Encouraging high school, you showed up to class and the individual to play a Wii game with the teacher told you what you were going another person will not only improve their to play for the day. If you hated it, you level of physical activity, but will also pro- probably did it anyway but were not motivide them with an opportunity to improve vated to try your best or to ever do that their social skills. Pairing electronics with sport again. You might have even tried to sports can be a great way to decrease the use an excuse to get out of the class for anxiety and frustration for these individu- that day. However, if you were given a als while, at the same time giving them a choice between at least two fun and comfortable outlet in which to activities/sports, you may have felt differincrease their physical activity. ently and looked at gym class in a more As stated so perfectly by Rozella Stewart positive light. from the Indiana Resource Center for Choices are not always possible in life. Autism (1996), “tasks and activities which However, when these opportunities preslearners associate with past success tend ent themselves, benefits can be reaped. For to stimulate interest.” Therefore, another example, NYIT’s Vocational Independence advantage of utilizing electronics to moti- Program, “Fitness Friday” involves the stumote healthy musculoskeletal function throughout life.” (Len Kravitz, PhD – The 25 Most Significant Health Benefits of Physical Activity and Exercise). So how can we encourage and/or motivate special needs students, especially those on the autism spectrum to make some type of exercise or physical activity part of their weekly routine?

FIRST IMPRESSION: NYIT’s VIP Fitness Fridays program allows students to choose favorite fitness activities, including yoga, basketball, walking, video fit, swimming, and circuit training.

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s we now all know, data has consistently proven the importance of developing an exercise routine as a way to improve one’s health and overall self-esteem throughout life. “People of all ages can improve the quality of their lives and reduce the risks of developing coronary heart disease, hypertension, some cancers and type 2 diabetes with ongoing participation in moderate physical activity and exercise. Daily exercise will also enhance one’s mental well-being and pro-

eparent.com | EP MAGAZINE • June 2015 27

ferent people, who may or may not be their friends.

LEARNING TO COMMUNICATE IN TEAM SPORTS

ALL FOR ONE: Team sports allow each individual player to bring their own abilities and strengths to the team to make to make it more strong and efficient. dents choosing between a myriad of activ- vide them the opportunity to showcase ities for the afternoon. These activities their social and leadership skills. Ross Morrison, a sports expert with the include yoga, basketball, walking, video fit, swimming, and circuit training. What is NSW Department of Education and great about these choices is that they range Communities, has said, “When you play a team sport you learn from team sports to that it doesn’t come individual sports. The CONTINUOUS EFFORT – down to the best playteam sports “elective” NOT STRENGTH OR er.” allows the student to INTELLIGENCE – IS THE KEY TO UNLOCKING OUR Team sports allow learn the rules of the POTENTIAL. each individual player game in a more sup- LIANE CARDES to bring their own abilportive environment ities and strengths to while also learning how to be a good teammate, a good win- the team to make to make it more strong ner, and a good loser. The individual fit- and efficient. Teaching our students that ness electives allow the student to get while we cannot always control how the some good exercise without the stress of game is going to end, they learn that they social interactions. The hope is that each can always try their best and put in effort student leaves their chosen elective for the to support their teammates. According to day (whatever it may be) with a positive feeling about their activity and a greater www.schoolatoz.nsw.edu.au team sports give kids the opportunity to: desire to make fitness a part of their lives. • be less selfish and to think of other people; THE ENDLESS BENEFITS OF • deal with losing as well as winning. TEAM SPORTS They learn that things are not going to There are so many benefits of enrolling go their way, or the team's way, all the your student into a team sport. For those time; on the shy side and that need the encour• overcome shyness by putting them into agement to find their voice, a team sport situations where they need to commucan offer them self-confidence and supnicate with others; port from the team to come “out of their • become more sociable in different envishell.” For those that have an abundance ronments. They have to deal with difof energy, a team sport can offer them a positive avenue to get their energy out. And for those that are social and enjoy being around others, team sports can pro28 June 2015 • EP MAGAZINE | eparent.com

While our students attend school, they have to learn how to navigate a variety of social environments. When they are a part of a team sport, they can learn effective communication skills that can transfer to their everyday lives. Being part of a team is much more than just being a player. They have to learn how to communicate with the other members of the team, whether they are loud and overbearing or shy and passive. Better communication skills can lead to stronger peer relationships and advocacy skills. At Discover Soccer, they have summed it up perfectly: “Social success is built on our ability to communicate correctly and appropriately.”

THINK OUTSIDE OF THE BOX Many students that we have worked with “on the spectrum” have had definitive interests that many may not consider to be “usual.” They may have preoccupations and fascinations that may be considered "bizarre" or strange. (Stewart, 1996). Why not use these “fascinations” as a strength that can be tied into a physical activity? For example, if a student has a fascination with trains, travelling, and reading maps, you can utilize this interest to get them interested in bike riding. Using a stationary bike, the student can be challenged to map out and then complete a route that can take them from point A to Point B. Another example could be to turn a student’s interest in all things “Hunger Games” to an introduction to archery. Most important of all, you need to get to know your student. With this knowledge, their idiosyncrasies that may have led to negative experiences throughout much of their lives can be utilized to their advantage – not only physically, but emotionally as well.• ABOUT THE AUTHORS: Helene Schorr is a social counselor and instructor for the NYIT Vocational Independence Program. She has a Master’s degree in school counseling from CW Post. Erin Vlasak is the Director of Student Services for NYIT VIP. Erin oversees the social counseling, residential life, medical and fitness programs. She has a Master’s degree in College Student Development from Long Island University.

THE SPECIAL NEEDS RESOURCE SINCE 1971

WELCOME TO EPARENT.COM UNDERSTANDING THE REDESIGN This month, EP World, Inc. is unveiling a dramatic redesign of its eparent.com website and announcing its integration with EP Special Needs Connect, a brand new take on social media networking for the special needs community. This marks the second step in a rolling redesign of eparent.com in conjunction with the introduction of our new channel, EP Special Needs Connect, providing an entirely new interactive space for people with special needs, families and caregivers. The EP website redesign enhances the aesthetics of eparent.com, and with the introduction of the EP Special Needs Connect channel, fosters participation and interactivity between readers, content creators and marketers in order to meet the demands of a new and evolving media in the special needs community. “This is an exciting opportunity for EP to meet the ever-changing demands of the special needs audience, while continuing to deliver the award-winning journalism that made EP so essential and helpful to our readers,” said Joe Valenzano, CEO at EP World, Inc. “Moreover, this redesign offers fantastic opportunities to deepen existing relationships by further engaging the special needs community.” EP will now be able to put information and education at the center of social media by creating new opportunities for content creators, the special needs community and marketers to participate in the conversation in real time, as it unfolds on our website. It is yet another way to bring EP to life, augmenting its successful digital publication now in its 44th consecutive year of publication.

VISIT OUR NEW CHANNEL! www.eparent.com

WHY REDESIGN THE WEBSITE? One of the things that we really wanted to do was to combine ep magazine architecture with EP Special Needs Connect architecture to start to re-energize the website so that we could begin to have a lot of voices in it; voices where ideas can be shared and families can connect on best practices for their loved ones with special needs. The other underlining goal was to combine content, data and the conversation on the same page in a seamless way to enable new kinds of connections and relationships that people can have. Most of all we wanted to provide a forum for families to share ideas and

experiences and to eliminate the age-old feeling that they are all alone! EP Special Needs Connect’s Search & Respond enables you to reach out and interact with other families, caregivers and professionals who are just like you and can help you, using their own knowledge and experience. Consider this: Perhaps a mom in New Jersey is desperately in need of a pediatric special needs dentist for her son who has autism. Or, perhaps a military family stationed at Norfolk, VA has a child recently diagnosed with a mitochondrial disorder, and the family would like to speak with a physician with experience in this field. Maybe a family is simply looking for the best wheelchair to assist their son in his desire to compete in wheelchair basketball. Search & Respond allows you to reach out and touch someone in a network that has been designed with you in mind based on over four decades of work in the special needs arena.

WHAT’S THE NEXT STEP FOR EPARENT.COM? One of the things we’re doing here, in a sense, is extending the EP website to lots of contributors who produce content valuable to the EP readers, so that we become a place where people talk and exchange their ideas. We want to make EP the place where people with special needs and their loved ones go for the information they can trust and rely on!

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EP Q&A

THE GAME ACCESSIBILITY SPECIAL INTEREST GROUP (GA-SIG) OF

THE INTERNATIONAL GAME DEVELOPER’S ASSOCIATION (IGDA) INTERVIEW BY VANESSA IRA

ounded in 2003, the Special Interest Group (GA-SIG) within the International Game Developer’s Association (IGDA) is made up of volunteers who have a passion for game accessibility. They have stated that they seek to make video games playable for everyone and take special considerations for gamers with disabilities of any sort. The GA-SIG also states that they are community neutral. They are an informal group of volunteers representing a variety of organizations, seeking to share and communicate issues and solutions related to game accessibility, not looking to compete with other sites or organizations. EP magazine recently conducted an interview with the Special Interest Group of the International Game Developer’s Association to discuss their current work and progress in the area of game accessibility. Our conversation with Thomas Westin, of Stockholm University’s Department of Computer and Systems Sciences (DSV) and GA-SIG’s co-chair, provided fresh perspectives and information on game accessibility that, we are sure, many of our readers who are gaming enthusiasts will want to know more about.

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EP: Who founded the IGDA? Thomas Westin: Earnest Adams founded the IGDA (International Game Developers Association) in 1994 (originally the Computer Game Developers Association), as a “professional association that was needed to give developers a voice”

SPARKING NEW CONCEPTS Thomas Westin, Stockholm University’s Department of Computer and Systems Sciences: “The reception from the industry, including developers with various disabilities, has been increasingly positive.” PHOTO BY OFFICIAL GDC

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(https://www.igda.org/?page=history). The mission of the IGDA is, “To advance the careers and enhance the lives of game developers by connecting members with their peers, promoting professional development, and advocating on issues that affect the developer community” (https://www.igda.org/?page=about). The Game Accessibility SIG is closely related to the advocacy part. EP: What are the backgrounds of the committee members for Game Accessibility Special Interest Group of IGDA? TW: The background varies; it is people from both the game industry and universities, with or without special needs. This mix is what I like best about the SIG; it is not tied to any specific topic other than game accessibility, nor is it only about academia or industry. It is a great place to meet many of the people behind great efforts in the field of game accessibility. I used to describe the SIG as a volunteer-based, informal and bilateral organization, where we can share thoughts and insights across organizations. EP: What are the goals of IGDA’s Game Accessibility Special Interest Group? TW: Our mission statement is: “Computer and console games are an important cultural and quality of life issue. By collaborating with the rest of the game development community the Game Accessibility SIG intends to develop methods of making all game genres universally accessible to all, regardless of disability. In order to do this we will promote education of game developers in accessibility design, tax incentives for accessible game developers, corporate sponsorship and accessibility ratings.” (http://igda-gasig.org/) A concrete list of current actions we are working on is available as an open resource through our website (http://igda-gasig.org/). In summary, the current actions include: • Educate tool and engine developers about accessibility support • Research and produce bolt on curriculum material for higher education courses • Push for accessibility information in store fronts such as Steam • Advocate for “fixed point mode” for switch users on iOS devices • Create open code solutions based on game accessibility guidelines

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Conduct research and present at conferences Broaden the Global Game Jam Accessibility Challenge Create a Twitch channel for Game Accessibility Update previous successful efforts with funding bodies like Film Victoria in Australia • Improve accessibility at the Moscone Center in San Francisco where the Game Developers Conference takes place every year. • Improve accessibility of our main website (http://igdagasig.org/).

ON A MISSION: Computer and console games are an important cultural and quality of life issue. By collaborating with the rest of the game development community the Game Accessibility SIG intends to develop methods of making all game genres universally accessible to all, regardless of disability. EP: How large is the market for gaming enthusiasts with special needs in the US? In the world? Are their interests and needs currently being served well by the gaming industry? TW: That depends on how you define the market. Popcap made a survey showing that 20% of their gamers had a disability, and also that those 20% played more than gamers without disability. (PopCap, 2008). An academic journal paper, based upon US census data showed that 2% in the US can’t play games at all, and 9% have a reduced gaming experience due to a disability. (Yuan et al., 2011) Worldwide, there is no study of the market of which I’m aware. However, the numbers above should be extendable to other countries with similar conditions in terms of, e.g. people with impairments among the population, economy and available infrastructure such as computer hardware and Internet bandwidth. EP: Outside “mainstream” games (those that can be bought at the mall), are other games being created specifically for people with special needs—say people who have autism, ADHD, physical disabilities? TW: Yes. For instance, blind or low vision gamers/developers make audio games and they have strong communities, e.g. audiogames.net and applevis.com. Further, there are game jams where developers meet for a few days to create innovative games, where accessibility is a differentiator. In the latter case, accessibility sparks new game concepts, fun for all. Regarding autism and ADHD, the study by Yuan et al. (2011) concludes that there have been few efforts for making games accessible for cognitive impairments. Hopefully there can be some genuine change to that situation further on. However, regarding ADHD my hypothesis is that as games are able to immerse gamers for hours, I think well-designed games are not a problem; on the contrary I think well-designed games can be a model for how other artefacts could be designed for gamers with ADHD. EP: When you meet with gaming industry professionals, what issues are discussed?

TW: It used to be, “What is the top-10 things to do?” but, today, there are several sets of guidelines available, which is great as a starting point for discussion. Another thing is the question of return-on‐investment, which often is built on a misconception; most of the solutions can be implemented quite easily and with low cost as long as it is done early in the design process. Further, disabled gamers tend to play more games than non-disabled, so even if the group is smaller, this smaller group spend more money on games provided they are accessible. Some die-hard blind gamers try to play all games just to find a few which actually are possible to play. Retrofitting a bad design, however, can be hard and expensive. That is one reason one of our top priorities is education about game accessibility, in order to raise awareness among developers and game students. EP: How has the reception been to the work that you’ve done, from the perspective of other gaming enthusiasts with special needs? From the perspective of the gaming industry? TW: The reception from the industry, including developers with various disabilities, has been increasingly positive. We have seen a big change in the interest during the last couple of years at the biggest event, the Game Developers Conference (GDC). At our first roundtable in 2004, we had one attendant. In 2015, we had hundreds of people in the audience at a panel presentation and a lecture, plus 34 people at our roundtable. You can find out more about what happened at GDC 2015 via our blog http://igda‐gasig.org/events/ EP: Can you let our readers know about your successes? TW: Without any funding, we have been able to hold events at several game conferences since 2003, most notably the GDC. While it is hard to say what impact these events have had, I like to think it at least has contributed to awareness among developers, which in the long run have had some effect. For instance, a recent revision for Sony Playstation 4 included accessibility in a firmware patch, which is a big step forward for accessibility as consoles are very closed systems, hard to modify. More specific successes related to these events can be summarized as: • Our white paper from 2004 is often referenced in academic research papers • A full day of Accessiblity talks at Games for Health conference • A White House Briefing Booklet for a Game Accessibility Day • The FCC Chairman Awards for Advancements in Accessibility for GameAccessibilityGuidelines.com where several SIG members contributed • Accessibility at Global Game Jam 2011, Central Orlando Chapter • Several funding bodies have included accessibility criteria, e.g Film Victoria, Screen Australia and the EU fund Creative Europe. • A Minecraft mod for closed captioning was made in response to our panel at GDC 2015.•

References PopCap. 2008. Survey: 'Disabled Gamers' Comprise 20% of Casual Video Games Audience [Online]. Available: http://www.prnewswire.com/news-‐releases/survey-‐disabled- ‐gamers-‐comprise-‐20-‐of‐casual-‐video-‐games-‐audience- ‐57442172.html [Accessed 2013- ‐03-‐09. Yuan, B., Folmer, E. & Harris, F. 2011. Game accessibility: a survey. Universal Access in the Information Society, 10, 81-‐100

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ENGINEERING A

t c e j o r P l a i c e p S y r Ve

PHOTOS PROVIDED BY UNIVERSITY OF TULSA • TAKEN BY ERIK CAMPOS

or 25 years, University of Tulsa (TU) engineering students have completed their senior project by working with children with special needs, designing and building every day products in a way that is easy for them to use. This year, students designed and built a small portable kitchen to offer a variety of tactile and

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auditory experiences for children with developmental challenges, allowing them to participate in mixing, chopping, slicing and dicing. The senior design project was part of the university’s Make a Difference Engineering (MADE at TU) program — a way to combine classroom projects and community service.

MADE FOR EACHOTHER: (Above) TU’s project collaboration with Little Light House children and therapists has become a fun and rewarding annual event. (Opposite) The children of Tulsa’s Little Light House were excited to explore all of the cooking center’s innovative functions. For children who are developmentally or physically challenged, the kitchen is a fun way for them to experience the cooking process. he TU engineering students worked with staff from the Little Light House, which provides educational and therapeutic services free of charge to children with special needs, to identify areas of need that meets both the desires of the organization and the needs of those children.

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BACKGROUND OF THE SENIOR PROJECT It was in the 1980s that University of Tulsa mechanical engineering students began using their talents to address the special needs of northeast Oklahoma residents with physical and developmental disabilities. As the projects attracted more attention, the TU’s College of Engineering and Natural Sciences started receiving donations for the initiative. The college’s dean at the time, Steve Bellovich, expressed a deep and sincere interest in supporting the engineering students’ efforts and offered them financial support from his own college budget. In the early 1990s, the venture officially was branded the Make a Difference Engineering (MADE at TU) initiative to improve the lives of disabled Tulsans through the design and development of mobility aids and other adaptive devices. MADE at TU’s social service aspect is a direct reflection of one of the university’s core values – commitment to humanity – and is valuable to TU students and faculty. A true student-run organization, MADE at TU not only helps students develop comprehensive technical skills, but also allows them to gain the experience of client interaction. Bellovich, one of the TU’s most loved deans, passed away in early 2012, but his legacy lives on in the Make a Difference Engineering Endowment Fund, established in his memory.

Founded with an initial $250,000 investment, the fund’s earnings support MADE at TU by paying for materials and other expenses associated with the program. Students from all departments in the College of Engineering and Natural Sciences are invited to participate. In addition to general MADE at TU projects for members of the Tulsa community, all mechanical engineering seniors are required to complete a senior design prototype. These seniors often choose to build projects in support of the MADE at TU program.

MADE AT TU’S GOALS MADE at TU’s goals are broad – to use the engineering talents of students to make life better for people with disabilities. John Henshaw, Harry H. Rogers Professor of Engineering and Chair of the Department of Mechanical Engineering, is the MADE at TU faculty adviser. According to Henshaw, devices for people with disabilities have always made for good engineering projects for students. He explained, “The big difference with designing and building one of these projects is that it’s not very cost effective, so it’s the perfect student project. The biggest cost for projects like these is engineering time, and on a college campus you don’t pay the student engineers.” Students meet with clients on a regular basis – they must, to make sure the project is a success. “The solutions of many engineering challenges are often reduced to a set of equations and with MADE at TU projects there’s a little bit of that, but most of the things we’re trying to accomplish are difficult to do with equations,” said Henshaw. “You can’t skip the personal feedback of your clients. The cooking eparent.com | EP MAGAZINE • June 2015 33

center students built a prototype and took it to Little Light House for a trial run. There, they learned a lot of things to implement into the second one they built. Feedback from clients is a crucial part of the process.” “We worked very closely with the Little Light House. Two of our team members (Joe Meier and Khristen Thornburg) met with some of the therapists at the Little Light House every other week to give them an update, ask questions, and get ideas from them,” related Cooking Center team leader David Gogolakis (BS ’15) who earned his mechanical engineering undergraduate degree in May. “Additionally, I had the privilege of volunteering in one of the classrooms, getting to interact with the kids, and even participating in several cooking sessions prior to delivering the Mobile Cooking Center. I have also been able to continue volunteering once a week after the Mobile Cooking Center was delivered, and it has been wonderful to see the kids having so much fun cooking with the kitchen.” Cooking Center team member Joe Meier (BS ’15), who earned his mechanical engineering undergraduate degree in May said, “I met with the therapists every other week and I will say they were incredibly valuable to making this project a success. Without their insight, our team may have built something that functioned, but it likely would not have been useful and fun for the kids at the Little Light House.”

THE LITTLE LIGHT HOUSE “Most project assignments the TU students receive come through solicitations,” Henshaw said. “Little Light House first reached out to us for help with a project, and we’ve always had a strong connection with Anne McCoy.” (Occupational therapist at Little Light House and wife of Jerry McCoy, TU applied associate professor of physics) Molly Smith, the Little Light House director of development, described her organization as a tuition-free Christian developmental center for preschool aged children with special needs. They strive to provide hope for families of children with special needs and improve their quality of life by providing individualized special education and therapy services to these children and training to their families and communities. Of the TU engineering students work, she revealed that “TU students are opening up opportunities for our children that were never available to them before. Being able to 34 June 2015 • EP MAGAZINE | eparent.com

BATTER UP: The MADE at TU cooking center allows children to perform basic kitchen functions such as making pancakes by manually mixing the batter with a handle or remotely mixing the ingredients with an electronic device. The child is using a remote control device to dump ingredients into a bowl and also scoop the batter. drive, cook, and play independently are things that we could not have given them without this technology, and we can’t thank TU enough for what they have done to open up the world for our children.” “We at The Little Light House love The University of Tulsa engineering departments and MADE at TU!” said Anne McCoy, occupational therapist at the Little Light House. “These programs allow us to “dream big” for our students with special needs. As therapists and teachers, we regularly dream

up creative ideas to help our children. Unfortunately, the manpower and the funds necessary to make these creative ideas a reality are often limited. That is where TU steps in. In the fall of each year, we present our ideas to a bright, community-minded group of senior students. These students take our project ideas, add their design training and fabricate a high-quality, unique product. TU also funds the project through monies set aside for this purpose! “Throughout the semester, The Little

A PERFECT MIX: (Above) The kitchen project features a modified mixer that can be operated both via remote control or a manual handle. The device was designed and constructed by senior mechanical engineering students including Sam Carr (background). (Below) Mechanical engineering seniors, who graduated in May 2015, designed and constructed the MADE at TU cooking center for the Little Light House. Team members included (left to right) Mohamed Ghori, Sam Carr, David Gogolakis, Christopher Butler, Joe Meier, Khristen Thornburg and Salman Hassan Al-Ali. Light House therapists and teachers meet with the TU students to discuss progress, problems and modifications for the projects. A number of the TU students have chosen to volunteer at The Little Light House so they can better understand our children and their needs. Wow! Many of these engineering students are from all over the world. Through working on the projects with the children, they learn first-hand how much a child with special needs can grow and develop. As they return to their own countries, they go with changed paradigms regarding the great potential and worth of people with special needs!”

LISTENING TO THEIR NEEDS “The Mechanical Engineering students have listened to our needs of making all their projects accessible to all of our children,” said Dede Flatley, physical therapist at the Little Light House. “They have made sure through height adjustments, visual adaptations, use of switches to activate different aspects of the projects and the use of upper and lower mobility. They have pro-

vided projects that help the children with different aspects of their development by providing a fun activity that will not seem to

be ‘work’ to them. Other areas that the engineering projects have helped are sensory as well as visual tracking.” “I'd say the best part of this entire project was delivering the final prototype to the Little Light House,” said engineering student Meier. “Seeing the kids play with all the devices and the smiles on their faces made all of the work entirely worth it!” For Gogolakis, “Working with the children and therapists at the Little Light House

was fantastic. All of the staff at the Little Light House were so helpful and enthusiastic about the Mobile Cooking Center. They provided us with inspiration and great ideas for devices and features to include on the kitchen, and we got to take those ideas and turn it into a physical piece of hardware. This really helped us a lot, as we know about the engineering side things, but don't know much about the kids, while the teachers and therapists know about the different needs of the kids and the activities that would benefit them. The kids are amazing. Having the opportunity to volunteer and interact with them weekly has been wonderful. “ Erica Brown, mother of Reece, a purple class student is grateful for all the work done by the TU graduates: “We are so thankful to TU for their partnership with the Little Light House. They’ve provided a great way for kids that may not be able to be traditionally involved in a task to participate through technology. I got to see Reece make pancakes with his class, which is something he probably never would have done without the help of TU.”• eparent.com | EP MAGAZINE • June 2015 35

The Funding Guide for Children with Disabilities focuses on the author’s proven process for applying for support from the various funding sources that assist children. It also includes a directory of over 200 funding sources divided into three categories: National, State and Wish Funders.

NEW RESOURCE

How to Raise Funds for Children with Disabilities BY MELANIE DAVIS or more than a decade, Tamara Simmons has been assisting families in raising the funds they lack to cover assistive technology and other expenses for their disabled children. Tamara said, “I haven’t kept track, but I know I’ve helped hundreds of families.” Tamara’s journey to becoming a fund raising expert began when her brother, Hal, and his wife gave birth to triplets at only 27 weeks. All three babies were less than two pounds. The neonatologist told them it would be a miracle if all three survived. On the second day, their little son Jacob had a massive brain bleed which changed their lives from then on, as he was eventually diagnosed with cerebral palsy. When he reached 10 years old, Jacob’s parents wanted him to receive a new and promising treatment – hyperbaric oxygen therapy, or HBOT (which is no longer new and has solidly proven its effectiveness). At first everything was expected to go through for Jacob to receive the therapy, but then their insurance company refused to cover it. With that notification, Tamara declared that she would raise the money herself. Not knowing anything about fundraising, she sat down at the computer and began doing research. Hal was uncomfortable with asking for help, but Tamara insisted it wouldn’t be hard and went on to prove it. She raised over $12,000, providing Jacob with three rounds of treatment. After seeing how easy it was, Hal experimented with the process Tamara discovered. “One day, Hal proudly escorted me to his computer displaying a website that he had just used to fundraise for a

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swimming pool for Jacob, all on his own and without telling me,” Tamara laughed. From that success, both Hal and Tamara realized that they could assist other families, specifically to receive adaptive bikes for their children. Tamara and her family are owners of The Bike Rack in St. Charles IL. It began as a small shop, around 900 square feet, and grew into a large and successful store of 10,000 square feet over the course of 40 years. With his passion for biking, Hal discovered a bicycle Jacob could ride with the family despite his disability. Out of this technology, a new division of the business was launched called “Creative Mobility,” which specializes in bikes designed to maximize the abilities of the disabled and give them freedom to ride. In this division of The Bike Rack, all bikes are customized and ordered to fit the capabilities of the rider. Hal often does fittings and modifications meeting the needs of a wide variety of clients, from children to disabled veterans. Where the average two wheeled bike may cost around $300, the adaptive bikes average $3000. That is the challenge and reason families of the disabled need funding support; the expenses they face usually have an extra zero added to the cost. With multiple successes in raising funds for Jacob, Tamara

THANKS FOR THE RIDE: (Above) Jacob rides his customized bicycle. Adaptive bikes can cost up to ten times as much as an average bike, one reason families of the disabled need funding support.

decided that she would guide and coach the parents who came into their store needing adaptive bikes for their children that they couldn’t afford. She put together a fundraising packet which gave them step-by-step instructions, as well as the most current collection of funding sources. With this resource, Tamara assisted hundreds of families. “I vividly remember receiving a thank you letter from one of the parents telling me how, with the help of my packet, she was able to raise $9,000 for her child,” Tamara recalled. Mary Anne met Tamara when her special needs son Ethan was just six. Armed with Tamara’s funding packet, she was able to raise free money for two adaptive bikes (due to Ethan’s growth) and a new power chair. A community benefit was held, which raised funds for an elevator in their home. After the event they were only $4,500 short, but another organization they contacted made up the difference. In addition to these free gifts, Mary Anne was able to use the process Tamara taught her to be provided five days at Disneyland, as well as a trip to see Big Time Rush, Ethan’s favorite band. He even got to meet the band in person. Mary Anne has also received grant money for the tile needed in Ethan’s roll-in shower, along with funds for grab handles and bars for his bathroom. In all, by using the funding packet Tamara put together, Mary Anne has raised more than $30,000. In the course of working with many families, as well as therapists and other professionals through their Creative Mobility business, Tamara became aware of how little people knew about the existence of funding help. Even the experts serving the disability community were frequently in awe of what she knew and could accomplish. With such widespread lack of knowledge, it dawned on Tamara that she should expand her reach and write a professionally-published fundraising guide which she could share, so that more people can find the financial assistance they need. he Funding Guide for Children with Disabilities contains Tamara’s proven process for applying for support from the various funding sources that assist children. It features the best tips and advice for the greatest chance of being selected. It also includes a directory of over 200 funding sources divided into three categories: National, State and Wish Funders. In addition to the instructions for obtaining funds from these sources and guidance on how to locate more of them than are listed in her book, Tamara also teaches how to successfully run many other types of creative fundraising projects, including crowdfunding, and she shares inspiring success stories. Tamara said, “With the right knowledge, everyone who needs funds can raise them. All it takes is motivation, dedication and a belief it is possible. It is my hope that this funding guide assists thousands of families to see their children reach their greatest potential!” “I’ve been writing The Funding Guide for Children with Disabilities for many years and have received great enthusiasm along the way,” Tamara said. “This has allowed me to develop partnerships with many hospitals, organizations and nonprofits interested in sharing my guide with the families they serve.” The print version of The Funding Guide is being released on June 15, 2015 by Triumph Press and an e-book will come out in September this year. The print version is available for purchase at her website, www.YourDisabilityFundingSpecialist.com, and when it is released, the e-book will be free to anyone who visits the website where it will be available to download.

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FUNDING FUNDAMENTALS: Tamara’s book is for the families that want to provide their children with the very expensive things they need to help them function easier each day. The number of partners assisting to raise awareness and distribution of the free e-book is growing and Tamara is pleased to say that, to date, her guide will likely reach more than two million families. “I want this information to reach those who need it; and I’m happy to make it freely available.” Tamara explained. In addition to receiving the guidebook, those who download it will be able to sign up for a free quarterly newsletter, simply titled “The Funding Newsletter,” where they will continue to receive information on the latest trends in fundraising, success stories and other useful content. “I am frequently asked if this book will help adults, as they also have great needs.” Tamara observed. “The answer is ‘yes, absolutely!’ What makes this a guide for children’s needs, is the fact that all the funders in the directory are specifically for children, however the information and concepts apply to all ages and needs.” Tamara said that The Funding Newsletter will not be specific to children’s fundraising requirements only, but will educate on fundraising generally in the disability community. In addition to The Funding Guide and Newsletter, Tamara is creating an online course where people can watch and learn in a virtual personal coaching setting which allows her to walk them through the processes of fundraising, with the students of her course having completed letters of request and outlined fundraising project plans by the end of the lessons. This will also be available on her website and on Udemy.com. Tamara said that she has many great champions and sponsors making all of this possible, with a special thanks to The Abilities Expo, who has stepped up as the Media Sponsor, allowing her to attend all of their events where she is able to talk and connect directly with those she is serving. “At the Abilities Expo in New Jersey the beginning of May this year, I was able to witness, firsthand, the great enthusiasm and need for this book as I pre-sold many print copies at a pre-release discount. This showed me both the desire and urgency for this resource,” Tamara said. In order to continue her important work, Tamara is still seeking a few Title Sponsors, Champions and Advertisers. (There will be a special coupon section of the e-book.) • If you are interested in supporting this effort, or have any questions, feel free to contact Tamara directly through her email: [email protected] eparent.com | EP MAGAZINE • June 2015 37

TRANSITION BEGINS THE FIRST DAY OF SCHOOL BY RACHEL EZEKIEL-FISHBEIN • PHOTOS PROVIDED BY HMS SCHOOL n January, Amy and Phil Warmflash received the call that a therapies, Jordie chose to continue receiving physical, speech and space had opened up at the adult residential facility they had occupational therapy, and enthusiastically participated in the selected with their 21-year-old daughter, Jordana (Jordie) a full leisure activities Margaret Moul offers. She uses Skype and five months before she was to graduate from HMS School for Facebook to continue friendships from HMS and stay in constant Children with Cerebral Palsy. They had spent 16 years preparing contact with her family. Jordie, who has cerebral palsy, for such independence, but still, Jordie’s success story began at the age of five, when she entered they were not ready for this call. How would HMS, and evolved as she mastered unfamiliar and intimidating Jordie react to the timing and the transisocial situations, new technology, and the independence of restion? Would all of the preparation work? idential life. The f o s The family gathered at HMS to tell Jordie’s first classroom looked like any other kinders e succ sitions is Jordie the news, the tension obvious garten room, with colorful walls and cheerful pictures, ran t e e c s on their faces. A short time later, but it was a place of serious work. Jordie entered HMS n the fere illed f i d e Amy and Phil walked out of without the ability to use a communication device or f th a life riends drive a power chair, two of the most important skills n e Jordie’s room, tears streaming e f , betw munity ts for independence. Her anxiety hampered her ability to down their faces. Next came Jordie, teres om n c i h g t a huge grin splitting her face, as she access the social community of her peers and family. wi hin e enric far mor d sought to share her news and exciteOne of the first orders of business was helping Jordie n a one . y ment with her HMS family – her teachfind her voice, which would allow her to make choices and r and solita ers, therapists, nurses and friends. form social relationships. Jordie began with a tray on the Jordie moved into Margaret E. Moul Home front of her adapted stroller, with a picture for ‘yes’ and one for several weeks later, bringing with her a transition ‘no,’ which she could access with her fists. Jordie learned to use booklet created by HMS, which described her social history, per- her hands in this way to answer questions long before she was sonality, attitude, likes and dislikes – a Cliff Notes of sorts for the able to nod or shake her head. Those two squares grew into four, staff, to hasten Jordie’s transition. This information is essential in then eight and so on, until there were two pages of pictures Jordie the first weeks in a new residence, and providing it in writing could access with her hands. Today, Jordie is a confident commulessens the anxiety of a large change for everyone involved. nicator with dozens of pages of words at her disposal on her comJordie is a success story. She quickly settled into her new home munications device, and the ability to use the device to turn on and made friends. Although at age 21, she could have foregone her computer and TV.

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Building Jordie’s communication skills helped her overcome her social anxiety and build relationships. She participated in a structured Communications Group, in which she and her peers were taught to use their devices to converse with each other. As she came closer to transitioning out of HMS, the ability to start a dialogue and engage others would become a key component in living a rewarding and engaged adult life. “We believe that transition begins from the day we accept a child, and is made up of myriad adjustments along the way,” explains HMS executive director Diane Gallagher, Ph.D. “Every child’s life is filled with transitions on the road to independence. For children with complex disabilities, like our students, these transitions are preeminent, because the stakes are exceedingly high. The success of these transitions is the difference between a life filled with community, friends and enriching interests and one far more solitary.” The IDEA mandates that schools begin transition planning when a student turns 14. “At 14, we provide families with a checklist broken down by age up to 21, to give them a preview of what might be next, without overwhelming them,” explains HMS education director Christina

A VOICE FOR THOSE WHO CAN’T SPEAK: Strong opinions and functional communications skills helped Carla become a leader at Mary Campbell Center.; she ran for student president and won.

Coia. “However, from the time the student enters HMS, we are looking at goals and objectives that will allow them to be happy, fulfilled adults in the post-21 world.” HMS started working on transition goals for Jordie when she was five years old. At every meeting from age five to 21, the word transition was spoken in some context. By the time Jordie turned 14 and it was time to start planning, the word no longer frightened her parents. “When Jordie was 10, they’d mention ‘transition’ as ‘something we’re not talking about yet,’ remembers Amy Warmflash. “It wasn’t scary, because it was just part of the horizon, but still, you’ve started to think about transition.” he most important–and sometimes most difficult—skill for transition is communication. Students must be able to express their fears, feelings, needs and expectations to gain any semblance of independence and control over their lives. That can be exceedingly difficult for HMS’s students, the majority of whom depend upon assistive technology to communicate. At 14, HMS students join a Functional Life Skills (FLS) group. The FLS curriculum grew out of the real life experiences of HMS graduates like Carla Talarek. It was developed to meet the needs of students in post-21 residential, social, and volunteer situations. To say that Carla Talarek was unhappy to come to HMS at age 17 would be an understatement. Carla cried almost every day her

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first year at HMS. For Carla, coming from the comfort of her hen Kyle DeLeon, 18, entered HMS at the age of seven, home, where the world revolved around her needs, moving to his speech was highly limited and so were his interHMS was a culture shock. But Carla had much to learn if she was ests. In fact, he had one interest: wrestling. A shy boy to be successful as an adult living with her peers: how to wait, with trouble expressing himself, Kyle avoided social interaction, how to share time, and how to identify things of interest in which and was more comfortable with his wrestling magazines and she wanted to participate. Unlike children who move into HMS’s shows than with his peers. residential facility at a younger age, Carla, already a young Even when Kyle moved into HMS at the age of 10, wrestling woman, had strong opinions about her care. dominated his time. When he was required to participate in Those strong opinions, when combined with functional com- leisure activities, he was disinterested. munications skills, helped Carla become a leader at Mary When students transition into adult living, their days lose the Campbell Center in Wilmington, DE, where she now resides. structure of the school day. Therapies and education are no Today, Carla considers herself a voice for residents who can’t longer mandated, and hours can be spent alone unproductively, speak. unless students choose to engage in leisure or recreational activ“Self-advocacy is an important skill for our students. They ities. His team knew that Kyle’s happiness, post-transition, need to learn how to let people know what they want without depended upon learning to enjoy leisure activities. The key to getwaiting to be asked,” says HMS transition consultant Ellen Becker, ting there, they intuited, was to build Kyle’s communication MSW. “They also need to learn how to get along with adults and skills. peers – how to communicate in a way that draws people in, how “We always felt that as he grew in his ability to express himself, to start a conversation. There’s a give and take in relationships, he’d feel more comfortable in social situations, and this has and at some point, they were only able to take. We give them the worked out exactly according to plan,” explains Kyle’s teacher skills to expand that relationship.” Kevin Rafferty. “Kyle was inhibited socially by his inability to Carla fought tooth and nail against the tools she needed for her express himself. We were able to build communication work into future independence. Says Carla, “I didn't like it (her communica- every aspect of his programming, incorporating it across all settions device), because, it was a new thing. I hated any changes. tings from lunch to dance to the dorm room to the classroom, …but I learned to be better with it... It opened a new door for teaching him how to use his device to enable him me because, now, I can drive up to anybody, and start talkto be a social human being.” As ing without any help.” Carla’s newfound independence As Kyle’s communications improved, he es g a d l and pride paved the way for her to run for student became less shy and grew into a willing a chi e educapresident at HMS, and win. participant in after school activities, f th ents o r t a u p In her graduation speech, Carla thanked her becoming fundamentally more o tem, to navi- involved with his peers. And, because s y s team at HMS, saying, “Today is a very special day. I w tion rn ho ifferent HMS partners with outside arts organia am very happy to move on. I am going to live at e l must a vastly d with Mary Campbell Center. I am going to meet new zations to develop its extracurricular gate m, often ort people…you taught me how to speak up for activities, Kyle also learned how to syste ttle supp myself.” interact and work with strangers. i l . e y r c Through the FLS, program, HMS provides special“Kyle’s behavioral issues were based on ve idan u g r ized, individualized experiences for students that build not feeling in control,” explains Rafferty. o their communications skills across the curriculum and set“Over time, using his communication skills to ting. Advocacy and self-protection, along with a wide array of crebetter control his environment has become a coping ative arts, support the education program curriculum. The HMS mechanism for him. As a result, his behavioral issues have residential program prepares students for living away from home, improved dramatically. Kyle was motivated to improve his comteaching them how to direct caregivers, and identify and access munications, because he wanted to be part of things and also to leisure interests. Parents are often surprised by students’ interest be involved.” in residing at HMS and fearful of letting someone else take care of Kyle’s mother Eugenia credits Kyle’s improved communication their child. Yet many of these students yearn for the increasing skills with transforming his life, “Kyle’s become more a part of independence most adolescents and teens enjoy. the community. The more he’s involved in, he’s forced to com“Our students watch their siblings have sleepovers, stay after municate with people and it helps him not to be trapped inside school for sports or clubs and eventually move out of the home. himself. It helps him to be more independent. He now underMeanwhile, it feels like they’re just standing still. Now they can do stands that there are other things out there for him.” these same things that a typical older child might do, like living in a dorm and hanging out with friends late at night,” says Dee he legal age of transition from special education to adult Avegnon, HMS’s director of residential services. “It gives them a services in Pennsylvania, 21, is a critical juncture, which sense of belonging, of independence and normalcy.” intimidates many families. As a child ages out of the eduOne of the key skills taught for transition is the ability to be cation system, she loses many of her social services. Parents involved in a community. Community is built through leisure must learn a new set of rules and how to navigate a vastly differactivities, shared living space and activities in the larger commu- ent system, often with very little support or guidance. Fears can nity, such as trips and volunteerism. come up about a child’s care as parents’ age, financial security

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more formal, there needs to be a dialogue about what the child and family want. Many families assume their child will always live with them, but that is not always what the child wants. Families have several other options: group homes, residential centers, and nursing facilities. Each placement depends upon the student’s physical and intellectual capabilities, and where they will have the best quality of life, i.e., as much independence as possible, the chance for a peer group and the opportunity for engagement in the community. It’s important to test drive any potential placement to check the fit, whether that means engaging in activities at a residential center or getting to know other residents at a group home. If a child is going to live at home, there must be research and preparation to find activities that will keep her engaged and ensure a community of peers. For typical children, the transitions that lead to such independence are routine and well established. For children with complex special needs, it can be hard to create these touchpoints, but this doesn’t mean they are any less necessary or that these children thirst for independence any less than typical children. “We want to be sure our students are independent and exert positive influence on people and things affecting their lives to the fullest extent possible,” says Gallagher. “Our students transition into using communications devices that give them a voice, and power wheelchairs which give them autonomy; we teach them to create art, perform on stage and make music as they transition from ART FROM THE HEART: Kyle DeLeon checks out his artwork at the HMS booth at the being an observer to a participant, and we Rittenhouse Flower Market. The school sold students’ artwork, as well as notecards featuring their art, at the annual event benefiting HMS. teach them how to make friends and engage outside our walls. They learn to make decisions and choices, gaining more control over their own lives. We and physical care and safety. Transition also symbolizes the shift from childhood into adult- seek every opportunity to teach our students to navigate new sithood, which often means saying goodbye to the safe harbor of a uations—from attending a ball game to volunteering—experitrusted school and beloved teachers and therapists, and move- ences that are simply expected of most children, but serve as ment into uncharted waters. Options for a child’s care when they transitions to our students…steps toward building independence reach the age of maturity are often far more limited, particularly from their families and providers, and thriving as adults.” Amy Warmflash concurs as she reflects upon Jordie’s transifor families who live in rural areas. HMS supports families in choosing the next step in the transition process. This includes tion, “If you had told me that five year old in the little adaptive taking students to visit residences and other potential place- stroller in 1997 would come out of there fully communicating ments, and helping parents try to access funding for the next and moving and be able to be independent of me, I wouldn’t have believed you,” continues Amy, “and then I watched it happen over stage. In the beginning, before a child is even enrolled, HMS speaks to the course of 16 years.”• the family about their goals for their child. Usually communication and mobility top the list. ABOUT THE AUTHOR: As students mature, it becomes increasingly important to build Rachel Ezekiel-Fishbein, is based in Elkins Park, PA. social skills and independence. As transition planning becomes eparent.com | EP MAGAZINE • June 2015 41

The issue raised by OSERS Letter to Baus addresses a very important issue, namely whether the parent can include skills not addressed by the SDs evaluation within an Independent Educational Evaluation.

InDEpEnDEnT EDucaTIOnaL EvaLuaTIOnS

Will the Real Regs please Stand? BY STEVE C. IMBER, PH. D. n February 23, 2015 The Office of Special Education and Rehabilitative Services (OSERS) of the Department of Education (DOE) issued the policy Letter to Baus. Ms. Baus asked whether a parent had a right to request could an Independent Educational Evaluation (IEE) in an area that was not previously assessed by a school district evaluation. OSERs cited Federal Regulation under 34 CFR §300.502(b)(1) of the IDEA, a parent of a child with a disability is entitled to an IEE at public expense if the parent disagrees with an evaluation obtained by the public agency. Evaluation is defined at 34 CFR §300. 15 as procedures used in accordance with 34 CFR §§300.304 through 300.311 to determine whether a child has a disability and the nature and extent of the special education and related services that the child needs. An initial evaluation of the child is the first completed assessment of a child to determine if he or she has a disability under IDEA, and the nature and extent of special education and related services provided. 34 CFR §300.30 l. Once a school district has conducted its own evaluation, a parent has the right to obtain an IEE at the public expense. A school district (SD) has the right to initiate a Due Process Hearing to demonstrate the appropriateness of its evaluation. If the SD prevails, then the parent has the right to an IEE but not at public expense. The issue raised by OSERS Letter to Baus addresses a very

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important issue, namely whether the parent can include skills not addressed by the SDs evaluation within an IEE. OSERS is certainly noting that the parent has the right to address this issue. What is especially significant is that OSERS makes no reference to the DOEs Memorandum to McDonald regarding Independent Educational Evaluations (IEEs), March 28, 2012. The Memorandum stated that, “Based on review of the New Jersey regulation, OSEP’s assessment is that N.J.A.C 6A:14-2.5(c)(1) limits the parents’ rights to an IEE by giving the public agency an opportunity to conduct an assessment in an area not covered by the initial evaluation or reevaluation before the parents are granted the IEE. In order to receive its Federal Fiscal Year (FFY) 2012 Part B grant award, the State will need to provide specific written assurance to OSEP that the State will: (1) Revise New Jersey regulation N.J.A.C 6A:14-2.5(c)(1) to eliminate the provision that, “If a parent seeks an independent evaluation in an area not assessed as part of the initial evaluation or a reevaluation, the school district shall first have the opportunity to conduct the requested evaluation.” (2) Ensure compliance in the interim throughout the FY 2012 grant period with the specific requirements of 34 CFR§300.502; and (3) Send a memorandum to all Local Education Agencies to inform them of the changes to the regulation and the need to comply with the requirements in 34 CFR§300.502.”

STANDING FAST: The issue raised by the Office of Special Education and Rehabilitative Services’ Letter to Baus addresses a very important issue, namely whether the parent can include skills not addressed by the school district’s evaluation within an Independent Educational Evaluation. This USDOE Memorandum is particularly significant because request an IEE in advance or risk the opportunity to have a publiNew Jersey’s regulations limited a parent’s right to an unfettered cally funded IEE. In 2001, OSEP issued a Letter to Petska to the Wisconsin State IEE. Clearly, one of the reasons that a parent would seek to have Department of Instruction because it an IEE is to have a thorough evaluation, especially when a school district did not clearly, one of the reasons that imposed substantial limitations on those who could conduct IEES. elect to evaluate an area that the parent a parent would seek to have an These are troubled times, where SDs believes may identify an undisclosed area IEE is to have a thorough and states continue to attempt to erode of disability. The Letter to Baus is of particular conevaluation, especially when a Procedural Safeguards that were granted to parents under P.L. 94-142, the cern because the USDOE has a history of school district did not elect to Education of All Handicapped Children insuring that local and state agencies do evaluate an area that the Act (1975). not issue policies which violate §300.502 It is hoped that the USDOE will contin(e) (2) “Except for the criteria described in parent believes may identify an ue to aggressively enforce the federal regparagraph (e)(1) of this section, a public undisclosed area of disability. ulations pertaining to §300.502 (e) (2) agency may not impose conditions or “Except for the criteria described in paratimelines related to obtaining an independent educational evaluation at public expense.” Authority: 20 graph (e)(1) of this section, a public agency may not impose conditions or timelines related to obtaining an independent educational U.S.C. 1415(b)(1) and (d)(2)(A)) In 1988, the Office of Special Education Programs (OSEP), evaluation at public expense.”• which is also under the USDOE, issued a Letter to Gray, which required the Department of Education in Texas to cease and desist ABOUT THE AUTHOR: imposing its policy of allowing SDs to have 30 days to correct any Steve C. Imber, Ph. D. is a professor of Special Education at Rhode Island issues that its evaluations created for parents. College. He has conducted independent educational evaluations since 1977 and In 1992, OSEP issued a Letter to Imber to redirect the State of has presented nationally and written about IEEs since 1992. He serves as a conRhode Island to not impose an expectation that parents must sultant and an expert witness on matters pertaining to Special Education. eparent.com | EP MAGAZINE • June 2015 43

While Social Village is not intended as a replacement for therapy, it is giving children with learning disabilities, ADHD, autism and other challenges that impact a child’s social IQ a chance to feel welcomed and to feel happy.

SocialVillage

®

BY LAUREN AGORATUS, M.A. ocial Village is a novel concept in facilitating social interaction that is helping children develop friendships while having fun at Princeton Speech-Language & Learning Center in Princeton, N.J.

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What is Social Village? Social Village uses popular games and activities and the idea of “clubs” to bring together children ages eight to 23 on weekends. It is housed in a series of rooms built in the style of a teenager’s bedroom or clubhouse. Children are free to move from room to room during the same session to explore various activities. There is a Lego© Room, Videogame Room, Music Room, Quiet Room, and more. There are regular themes as well. (For example, one week might focus on “Minecraft”, during which the children create Minecraft mosaic pictures, make Minecraft mosaic rice treats, and so on.) Opened in the fall of 2014, Social Village currently offers two weekly sessions: • “Friday Night Out” for teens and young adults between the ages of 14 and 23 with activities including movies, live musical performances, board games, video games, and many others. • “Sunday Clubs” for children ages eight and up, including clubs for Games, Pokemon, Minecraft©, Legos,© Fantasy Books, Art & Anime and card games. There are also outdoor activities, weather permitting.

How Does it Work? According to Executive Director Terri Rossman, M.S., CCC-SLP, the vision for Social Village is “to provide a place for kids with mild social challenges to feel comfortable and have fun. It’s a place where they can find like-minded peers, pursue their interests and feel connected to a social community.” Trained social coaches monitor interactions among participants so that behavior is appropriate. Coaches reinforce skills using concepts including: 44 June 2015 • EP MAGAZINE | eparent.com

• Social Thinking®, which helps children understand “the thought behind the social skill,” based on the work of Michelle Garcia Winner, MA, CCC-SLP, a worldrenowned expert in the treatment of individuals with social-cognitive deficits. (Please see the other article in this issue for more details on Social Thinking.) • Executive Function, which is introduced to children using concepts such as “Stop and Read the Room” for situational awareness; “Ready, Do, Done,” the 3 Steps to task execution; and understanding the “Passage of Time.” These concepts were developed by Sarah Ward, MS, CCC-SLP, and Kristen Jacobsen, MS, CCC-SLP of www.cognitiveconnectionstherapy.com • Self-regulation, which is enhanced using concepts from “The Zones of Regulation©,” a curriculum developed by Leah Kuypers, M.A. Ed., OTR/L that uses vocabulary and concepts to help kids stay in the expected zone, or emotional state or arousal level. These visual cues are posted on the walls of the rooms as reminders to help stay self-regulated:

While Social Village is not intended as a replacement for therapy, it is giving children with learning disabilities, ADHD, autism and other challenges that impact a child’s social IQ a chance to feel welcomed and to feel happy – without the pressures of trying to “fit in” that they might encounter at school.•

For more information on Social Village, see http://www.psllcnj.com/social-village/about-us/what-makessocial-village-unique.asp

and http://www.psllcnj.com/social-village/index.asp

This terminology was created by Michelle Garcia Winner, MA, CCC-SLP, a world-renowned expert in the treatment of individuals with social-cognitive deficits.

SocialThinking

®

BY LAUREN AGORATUS, M.A. any parents of children with special needs are familiar with social skills, which help their child better interact with others. Social Thinking goes beyond what is usually covered in schools, to more concrete and explicit ways of thinking. Social Thinking uses the thoughts behind the social skills. This terminology was created by Michelle Garcia Winner, MA, CCC-SLP, a world-renowned expert in the treatment of individuals with social-cognitive deficits. Here are examples of some of the concepts used in Social Thinking groups at Princeton Speech-Language & Learning Center in Princeton, N.J., based on her work.

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Thinking with Your Eyes Imagine that a therapist is working with a child who has social communication and social skill issues. She wants the child to learn about “thinking with her eyes.” The conversation would go something like this: Child: “See my Nintendo game is blue and black.” Therapist: "I'm thinking with my eyes, I can see that it is blue and black.” Then they’ll do an activity where, without talking, the child looks at and “thinks with her eyes” at an object and the therapist guesses which one of four she was thinking about, then reverses it. So in the second round, the therapist would look at an object and have the child guess which one. In this way, the child would learn “thinking with her eyes” as well as learning about what someone is “thinking about.”

Group Plan Another activity in Social Thinking is “the group plan." If all the children are doing a Lego activity, such as making a building, and one child walks off and starts texting, he’s following his own plan, not the group plan. Children may at first need individual practice, and later progress to group practice in Social Thinking. Children need to have average language skills to benefit from

Social Thinking. It is also important for families to reinforce these skills at home. Social Thinking involves “emotional intelligence” such as “understanding that others have ‘thoughts’ separate from our own, to interpreting and responding to the nuances of verbal and non-verbal communication.” Teaching methods include: • Role Playing • Visual Support • Video monitoring • Positive Reinforcement Lessons involve: • Non-verbal communication • Group dynamics/How to “fit in” • Initiating conversations/small talk • Understanding abstract language • Problem solving and negotiating • Thinking flexibly • How behavior impacts others • Perspective-taking • Emotional regulation/self-control • Understanding hidden social rules The lessons vary by age and ability, ranging from learning about thoughts and expected and unexpected behaviors, to “smart guesses”, to self-advocacy. Social Thinking goes beyond traditional Social Skills training. Social Thinking “addresses

the thought processes behind social interactions, which helps children carryover and apply social skills to new contexts and environments.” •

For more information on Social Thinking, see https://www.socialthinking.com/what-is-social-thinking

Social Thinking Concepts http://www.queenanneelementary.com/uploads/4/0/4/0/4040 010/socialthinking_vocabulary.pdf

Social Thinking at PSLLCNJ Social Thinking at PSLLCNJ http://www.psllcnj.com/social-village/social-groups.asp

ABOUT THE AUTHOR: Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org

eparent.com | EP MAGAZINE • June 2015 45

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GEORGE MAVRIDIS FOUNDATION The George Mavridis Foundation’s purpose is to provide support for profoundly intellectually disabled citizens and their guardians facing therapeutic, medical, and legal challenges. The George Mavridis Foundation underwrote part of the Tufts University School of Dental Medicine’s Dental Facilities Program specifically to benefit patients with special needs. Tufts Dental Facilities is a network of eight clinics, seven of which are run in partnership with the Commonwealth of Massachusetts, providing care to more than 7,000 persons with intellectual, developmental and acquired disabilities each year. The program is a national model in fostering better oral health outcomes for patients with disabilities. Tufts University School of Dental Medicine was awarded the William J. Gies Award for outstanding achievement by an academic dental institution in 2014, which is presented annually by the ADEAGies Foundation a division of the American Dental Education Association.

leven years ago, my eldest son Justin was diagnosed with If you’re just beginning your journey with autism, ask your moderate to severe autism. At the time I didn’t know any Early Intervention coordinator about programs, services, and other families with autistic children other than the ones I’d camps. We found out about several local autism organizations that had in my homeroom as a teacher, and those children were much way, as well as about a number of camps that turned out to be older than my son. I didn’t know who to turn to for help in supple- wonderful for our son. menting the scant eight hours of services Justin was receiving each If your child is already in school, join your local SEPTA, or month from Virginia’s Early Intervention. I had so many questions Special Education PTA. The parents in mine have been regarding the gluten-free diet, yet didn’t know whom to ask for extremely helpful, plus they’ve provided an important sounding advice. I knew I needed a place to vent, but wasn’t sure I’d find a board for me over the years (and I’ve made friends!) support group to fit into, as several had turned me away because Check out the Autism Speaks website and Facebook page. Just my son was not high-functioning. Even months after Justin’s their tool kits alone have helped me overcome many chaldevelopmental pediatrician told us the news, I was still scared at lenges with my kids, both at home and in the community. what the future held, overReach out to different whelmed, and alone. autism organizations It finally hit me one day and attend as many workthat I used to be someone shops as you can. Many are who helped free, and others, but along with now for my the informason’s sake I tion provided needed to ask you, might for help. make some Fortunately I great conturned to the tacts. autism community, and Join a local support found a wealth of support, group. Reach out to advice and resources. local autism organizations Sometimes, the people I and even to your child’s met even provided me doctors to find one. They with a much needed laugh can be a great place (if the (and wine.) fit is right) to vent, celeThe autism community, brate your child’s accomboth online and in your plishments, and learn. “own backyard,” can be If you are looking for instrumental in helping a social skills group you surmount challenges, for your child, try nearby in giving you ideas, and in psychologists and psychiaBY KIMBERLEE RUTAN MCCAFFERTY being a place where you trists as well as local hospican feel surrounded by tals for suggestions. people who “get it.” Here are some of my favorite ways to integrate If your child is still young, ask your Early Intervention into the community, because we all need a place where we feel we providers if they can recommend other moms with autistic belong: children to whom they’ve delivered services in the past. I’m still If you’re fortunate enough to live in a state which provides friends with many of my kids’ providers (we spent so much time ample Early Intervention therapy hours for your child, reach together after all,) and I’ve helped out a few parents over the years. out to your child’s therapists with any questions you have. I have I also met a few wonderful moms who were farther along than I two children on the spectrum, and their therapists have given me was who turned out to be a great help. suggestions on developmental pediatricians, support groups, and You will undoubtedly have a number of people try to “set much more. I often asked them to question their other clients for you up” with other autism parents, and I used to roll my me regarding resources, and in doing so they provided me with a eyes at times at peoples’ matchmaking. However, one of my dearwealth of information. I found that even if they couldn’t answer est “autism mommy friends” is from my son’s hairdresser who my question, they knew who to ask. wouldn’t let me leave her establishment until I’d spoken on the If you’re looking for Applied Behavioral Analysis (ABA) phone to her client. You just never know! • providers for your child, try your local colleges or universities. Talk to the secretaries in the education department and ask if ABOUT THE AUTHOR: you can put up a flier, or have the professors mention the oppor- Kimberlee Rutan McCafferty has written several articles for Exceptional Parent tunity to their students. We acquired several of our therapists that magazine. She is also the author of Raising Autism: Surviving the Early Years, way, and it was a win-win for all of us. a memoir about parenting her two boys, both of whom have autism. Her new

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book is available on amazon.com eparent.com | EP MAGAZINE • June 2015 47

CONVERSATION can open the door to support.

Confidential Confidential cchat hat aatt VeteransCrisisLine.net VeteransCrisisLine.net or or text text tto o 838255 838255 PHOTOS PROVIDED BY: ERNST VANBERGEIJK, PH.D., M.S.W.

F R O M O U R FA M I L I E S … T O Y O U R FA M I L I E S

MILITARY SECTION

50 SUMMER VACATION TIPS MILITARY FAMILIES SHOULD KNOW ABOUT By Jennifer Woodworth, PSY.D MILITARY LIFE

54 DECIDING TO LIVE ON OR OFF THE INSTALLATION AS A COUPLE OR FAMILY 56 THE FALLEN HERO GUARDIAN ANGELS PUZZLES & CAMO

57 SAYING OUR GOODBYES By Shelly L. Huhtanen

U.S. MILITARY H

SUMMER VACATION TIPS MILITARY FAMILIES SHOULD KNOW ABOUT BY JENNIFER WOODWORTH, PSY.D ith kids out of school and energy to burn, how can you enjoy your summer vacation without breaking the bank? Summer fun does not have to be expensive and can be a time your family can bond over shared experiences, utilizing programs created and offered specifically to the military community.

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INSTALLATION AMENITIES: If you are not sure where to start planning your days for summer vacation, start with your local installation amenities. Take advantage of free or low cost offers located on your installation, including libraries, pool access, beach access, bowling facilities, and movies. Stay alert for reading programs through the libraries, where children can earn prizes for continuing their reading over the summer. Many installations offer low cost or free summer camps, youth and teen center admission, equipment rentals, and the use of military camp grounds. Also, consider staying in installation lodging during your travel. 50 June 2015 • EP MAGAZINE | eparent.com

DISCOUNTED TICKETS: Your local installation Morale, Welfare and Recreation office is a great first stop for discounted tickets for sporting events or concerts, along with Disney World, Sea World and other theme park attractions. The Waves of Honor program allows a one-time, free entrance per year to either Sea World theme parks Busch Gardens, Adventure Island, Water Country USA or Sesame Place for active duty military, activated or drilling reserveman, or National Guardsman, plus three dependents. Disney’s Armed Forces Salute Program provides discounts to military members and includes Walt Disney World in Florida, Disneyland in Anaheim, and the Disney Cruise Line. Pair this with lodging at a full service resort hotel or base lodging and you can save substantially on your vacation (see Lodging). Take advantage of Military Appreciation days at minor or major league sporting venues and special activities within the community. Not all activities will advertise about military discounts, so it is always a good idea to ask about one.

H U.S. MILITARY can change at a moment’s notice. On the Air Mobility Command website, installations that participate in Space A travel are listed along with contact information of how to obtain Space A travel. Unfortunately, there is always the chance that there is not room on the flight for you or your family; which could be an issue if you were able to get to your destination, but not have a flight back to your originating installation. Check the website http://www.amc.af.mil/amctravel/index.a sp for details, including eligibility, documentation needed, and how to sign up.

TRAVEL: Last-minute travel plans based on availability and cheap airfare tickets could be an option if you are flexible about where you want to travel. You can utilize search engines such as hotwire.com, expedia.com, cheaptickets.com, or specific airlines such as delta.com, southwest.com, or aa.com.

SPACE

A TRAVEL: Space Available Travel, known as Space A, is a unique privilege provided to service members, retirees, and their families. This type of travel used to be affordable and consistent in allowing service members, retirees, and their families to travel wherever military flights were going. However, now with operational security, flights are no longer posted online and

LODGING: Utilizing the amenities on installations can decrease your travel expenses on your vacation. Check out camping sites, lodges or inns, or resorts close to your destination. Timing of your travel can be critical in obtaining the best rates and availability. However, if you are flexible on your dates, you may find an excellent deal. Typically, you will have to book your stay with the specific lodging you are intending to stay and can utilize specific service branch websites for contact information. For example, active duty members, reservists, and retirees all have access to cabins on Cape Cod and Nantucket which are maintained by the Coast Guard. Also, Hale Koa Hotel, an AFRC on Waikiki Beach, is a favorite military resort destination and rooms can be reserved up to 365 days in advance. If you plan on traveling overseas, there are military lodgings available in Europe and Asia (check the MilitaryOneSource website for additional details).

gramming, quilts for children, and summer camps. With the support of the Department of Defense’s (DoD) Military Outreach Initiative, the YMCA is able to provide respite child care and memberships to military families. Check out their website for eligibility and contact information.

NATIONAL PARKS: The National Park service offers free annual passes to active duty military members and their dependents, which allows you access to more than 2,000 federal recreation sites. The pass covers entrance fees at national parks and national wildlife refuges however additional fees may apply for camping, boating, or other activities. Check the website for details. BLUE STAR MUSEUMS: Blue Star Museums is a collaboration among the National Endowment for the Arts, Blue Star Families, the Department of Defense and thousands of museums across the country. They provide free entrance to over 2,100 museums across the country for active duty military, National Guard, reservists, and their families from Memorial Day (Monday, May 25th) to Labor Day (Monday, September 7th). Check the website listed for details and to find museums in your area. This is also a perfect idea if you are visiting family across the country and want to fill some time with local culture or adventure.

WHATEVER YOUR SUMMER PLANS MAY BE, TAKE SOME TIME TO RELAX & ENJOY YOUR FAMILY. KEEP A BALANCE & CREATE NEW SUMMER TRADITIONS & MEMORIES.

YMCA: The Armed Services YMCA focuses on three main areas in supporting the military, youth development, healthy living, and social development. They offer activities from holiday pro-

CAMP: Operation We Are Here and Beyond the Yellow Ribbon host comprehensive lists of summer camps available for children of military families, including children of wounded warriors, children of deployed service members, reserve, and National Guard members. Teen Adventure Camps are a collaboration between The DoD's Office of Family Readiness Policy and several universities eparent.com | EP MAGAZINE • June 2015 51

U.S. MILITARY H to offer adventure camps for military teens, ages 14 to 18. There are more than 30 camps offered across the country and are offered free of charge for qualifying teens. There are also camps designed for teens that have special needs and are focused on safety and fun. Examples of camps include a river paddle excursion in Kentucky, sailing around Washington State's Puget Sound, and wilderness survival camp in Montana's backcountry. With more than 20 locations across the U.S., Camp Corral provides a oneweek camping experience to children, ages eight to 15, from military families. Although any child from a military family is eligible, registration priority is given to children of wounded, disabled or fallen military service members. Not only do the children participate in canoeing, fishing, arts and crafts, ropes course challenge, horseback riding, and other camp and outdoors activities, but a Military and Family Life Counselor (MFLC) is on hand at each camp.

TRAVEL General Travel Information http://www.military.com/Travel/Home/

Military.com Installation locator http://www.military.com/base-guide/ SPACE A

TRAVEL

Space Flight Available http://www.military.com/Travel/Content1/0,,SAF_overview,00.html

LODGING Military One Source http://www.militaryonesource.mil/mwr/using-military-lodging-and-facilities?content_id=266848

U.S. Army MWR http://www.armymwr.com/

Marine Corps lodging http://www.usmc-mccs.org/lodging/

Navy Lodge https://www.navy-lodge.com/

Air Force lodging http://af.dodlodging.net/

http://www.uscg.mil/mwr/lodging/Lodging.asp

ACTIVITIES

GIVING BACK: If you are looking to give back to the community during the summer, check your local city projects including beach and park cleanups, animal shelter volunteer opportunities, or sports coaching. These are ideas to enhance your families’ engagement in the community and model citizenship for your children. Whatever your summer plans may be, take some time to relax and enjoy your family. Try and include some education and culture with museums, recreation with swimming and sports, and down time with movie rentals and popcorn. Remember to keep a balance for your family, and create new summer traditions and memories. •

Lodging NAS North Island Coronado, CA

Coast Guard lodging

Event Tickets http://www.vettix.org/

Disney http://www.militarydisneytips.com/Disney-Armed-Forces-Salute.html#eligibility

National Parks Service http://www.nps.gov/findapark/passes.htm

Blue Star Museums: http://arts.gov/national/blue-star-museums#!CA https://www.bluestarfam.org/support/blue-star-arts/blue-star-museums

Armed Services YMCA http://www.asymca.org/

CAMPS Operation We Are Here http://www.operationwearehere.com/MilitaryChildrenCamps.html

Beyond the Yellow Ribbon ABOUT THE AUTHOR: Jennifer Woodworth is a licensed clinical psychologist in private practice in Vista, CA. She has worked in the mental health field for seven years, Her husband is retired from the Marine Corps and she has three children ages six, eight, and ten.

52 June 2015 • EP MAGAZINE | eparent.com

http://www.beyondtheyellowribbon.org/youth-camps

Military One Source http://www.militaryonesource.mil/cyt?content_id=268111

Teen Adventure Camps https://extension.purdue.edu/adventure_camps/

Camp Corral http://www.campcorral.org/about/

PHOTO COURTESY MILITARY ONE SOURCE

H U.S. MILITARY

eparent.com | EP MAGAZINE • June 2015 53

MILITARY LIFE DECIDING TO LIVE

ON OR OFF THE INSTALLATION AS A COUPLE OR FAMILY ilitary families are used to sudden and frequent moves. This process can seem daunting at first, but it doesn't have to be an overwhelming task for you and your family. By researching your new duty station and its surrounding community, you and your spouse (and your children, if you have them) can be prepared - and even excited - about the coming move and your new housing options. Having the right information can help you make an informed decision about whether to live on or off the installation.

M

DECIDING WHAT'S RIGHT FOR YOU Some research into your new installation and your new community will help you find what's right for your family. At the outset, be sure to think carefully about: Your family’s preferences: Compare your past experiences with what you might want for your current housing situation. Make sure your entire family takes time to talk together about what kind of situation would work best for everyone. If possible, visit installation housing areas and the local community. Then, sit down as a family and discuss the positive and negative aspects of life on and off the installation. Other families’ experiences: Talk with other families and find out what their experiences have been. Friends and relatives who have lived in rentals or purchased houses, but who are not in the military, can also be a source of valuable information. What you can afford: Many experienced service members find that in most areas, it is more cost effective to live on the installation. However, because of differences in basic allowance for housing rates, sometimes off-installation housing could actually cost less. Create a spending plan to help decide what you can afford. You can find current BAH rate at the Defense Travel Management Office website. Whether you want to use installation or community schools: If the installation offers a DoD school, you may want to consider that in your decision. Students living on the installation typically attend DoD schools when they're available. Visit the DoD Education Activity website for more information on school curriculum and links to schools. Also, be sure to research the school systems in the local area before you make your final decision. 54 June 2015 • EP MAGAZINE | eparent.com

PROS OF INSTALLATION HOUSING: Economic benefits: Living on the installation may provide real cost savings. You'll need to compare your BAH to current housing costs off the installation to be sure. Other military families nearby for support: Other military families can offer the close relationships your family members may want, especially during deployments. Quarters can be an exciting and fun place to live if you participate in activities and seek out other families for support and friendship. If you have children, they will have potential friends close by. Convenience: Living on the installation is like living in a small town. The installation exchange and commissary offer easy access to shopping, and it's not hard to find an art class or other hobby to keep you busy. Most installations also offer a fitness center, sports teams and recreational activities, such as bowling centers and movie theaters. Schools: In general, parents with children enrolled in installation schools have a high opinion of the quality of education DoDEA schools provide, including instructional quality, safety and discipline. To attend installation schools in the continental United States, however, you may be required to live on the installation. Safety and security: Many military families feel a great sense of safety and security living on the installation. Military police often patrol housing areas, giving military families more peace of mind. Depending on where you live, it's also possible that you may pay less for car insurance, due to the low incidence of crime, theft and vandalism on the installation.

CONS OF INSTALLATION HOUSING: May not be an immediate option: You could be placed on a waiting list depending on the availability of housing at your installation. If it's necessary to live off the installation while you wait for housing, the military will pay for you to move onto the installation when housing becomes available. Your place on a waiting list depends on your rank, the date you signed up for housing and the number of bedrooms you need. Housing offices have different rules for when you can put your name on the installation housing list, so check with them early on. Closeness to neighbors: This can be both an advantage and a disadvantage, depending on how you view it and how you approach the situation. Some of your neighbors will be co-

H U.S. MILITARY

HOME IN ON HOUSING: Some research into your new installation and your new community will help you find what's right for your family. Think carefully about your family’s preferences and what you can afford. workers, so if you like to separate work and home, you may prefer not to live on the installation. Common area maintenance: Depending on your installation (and whether or not you are in a multi-family dwelling), keeping your yard clean and tidy may be your responsibility. While there typically aren't inspections of housing, there may be grounds inspections. If you receive too many citations, you could be asked to move off the installation. Mowing, weeding, raking and snow shoveling are just a few of the outdoor responsibilities you may have.

your rank, number of family members and the ZIP code in which you live. If your housing costs more than your current BAH, you'll have to take on those additional costs. Sense of community: Depending on many factors, such as the size of the community surrounding your installation, the off-installation neighborhood you select may not be as closeknit as the military community on the installation. Proximity to convenient facilities: In addition to shopping and recreation activities on the installation, you may have doctor appointments and other reasons to be on the installation often.

PROS OF LIVING OFF THE INSTALLATION:

MAKING IT WORK FOR YOU AND YOUR FAMILY

Privacy: For many people, the biggest advantage can be privacy. A single-family house, whether rented or purchased, can offer greater privacy than the multi-family housing you might have on the installation. You also have fewer restrictions and will feel a sense of separateness from your job on the installation when you go home. You choose the housing to fit your family's needs: Are you looking for a large, fenced yard for your children and pets to play in? Do you need more bedrooms than installation housing can offer? Do you want a unique house that you can do with as you please? If so, you may want to either purchase or rent a home off the installation. Experience the local culture: If the area surrounding your duty station is very interesting or exciting - or if you're stationed overseas - you might prefer to live off the installation. This can offer you the best opportunity to get involved with the people and activities in the local area.

Whichever decision your family makes, you can take steps to ensure it works for everyone: Interact with military and non-military families. Whether you live in military housing or off the installation, try to interact with both military and nonmilitary families. Establishing friendships with fellow military families allows all of you to provide emotional and moral support for one another. Civilian friendships, on the other hand, can make it easier on the family when the other military families move. Get involved in the community. Encourage your family members to participate in sports leagues, sign up for dance or gymnastics classes or take a class related to their favorite hobby or pastime. The installation offers these activities at little or no cost, but you can also find them at community recreational centers or the local Y for a fee. These activities can help you get to know people in the community and feel more at home. Stay positive. Urge your family members to stay positive about the decision whether to live on or off the installation. If the decision made is not one that your child hoped for, explain why the choice was made, what the positive aspects are and how he or she will benefit from them.•

CONS OF LIVING OFF THE INSTALLATION: Financial responsibilities: This may be the greatest deterrent to living in off-installation housing. If you choose to live off the installation, you will receive your BAH, which is based on PHOTO COURTESY MILITARY ONE SOURCE

– Military OneSource Website

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U.S. MILITARY H

THE FALLEN HERO GUARDIAN ANGELS As the centerpiece of the One Million Rounds fundraising and awareness project, a life-size sculpture of the art is being created to go on tour in both England and the U.S. as an international campaign for our veterans.

he Fallen Hero Guardian Angels art was commissioned by Melanie Davis to reflect the stories of miraculous protection she was hearing as she wrote The Triumph Book: HEROES, 27 first person accounts from veterans spanning the decades of war from WWII up through our recent conflicts. As the centerpiece of the One Million Rounds fundraising and awareness project, a life-size sculpture of the art is being created to go on tour in both England and the U.S. as an international campaign for our veterans. Graham Thrussell is a master metal artist who is building the statue and incorporating artifacts from all the wars which he and others have collected. The figures in the statue will represent a few of the heroes in Davis’ HEROES book and messages in the book from our veterans will be inscribed throughout the statue.

T

THE STATUE BY GRAHAM THRUSSELL They stand upon a base created from the debris of war. From the battlefields of WW1 to WW2, through Korea, Vietnam, Iraq and Afghanistan, layers of artifacts will be woven together to form the substrate of war! Amongst the relics are shell cases found on the Airfields here; where I live! Swept from the returning American B17 Bombers, they are still harvested today, all these years later. Upon this fossilized base of conflict stand the four figures. At the back, standing tall, is Mark A Forester, USAF, Combat Controller. Dressed in the uniform of the modern US Combat 56 June 2015 • EP MAGAZINE | eparent.com

Soldier, wings outstretched shielding his comrades, wearing a radio, looking skywards, calling in help, standing proud! Tending to the wounded Soldier is Jackie Y. Albers of US Women’s Army Corp (WAC) wearing the WW2 style uniform of the period. Kneeling over the wounded young Marine she holds a drip above him, the life-saving fluid is connected to his arm, the line is sculpted out of recycled brass contrasting strikingly against the grey of the sculptures, where it enters his vein is also brass, as his veins are pumped up, they shine out giving him LIFE! At the foot of the wounded Soldier is a US Marine, Aldolphus Stuart. He is comforting the fallen Soldier from one Marine to another. He is wearing his uniform of the Vietnam war. And the wounded Soldier? He is in the combat uniform of the modern fighting Marine! He is Mathew Brown. Surrounded by the Guardian Angels of past battles, he is ALIVE! Hurt, but protected by the Men and Women that have sacrificed everything for Freedom! Running through the uniforms of each figure will be the words, sayings, and quotes of the Veterans themselves: their stories in their words! Although each figure has been inspired by those named above, whose stories are featured in The Triumph Book: HEROES, they are actually representing every serviceman or woman that has sacrificed for their country throughout history. God Bless them All! •

PUZZLES & CAMO

SHELLY HUHTANEN

Saying Our Goodbyes No one told me that one of the hardest things to do with a PCS move was saying goodbye to your child’s team.

It has taken a small village to care for my son. Broden has a BCBA, ABA tutor, special education teacher and there are two aides in his classroom. I have cried tears of joy and tears of fear with his ABA tutor, Sharon and teacher, Cheryl. I have yelled out of anger and frustration at them if I was frustrated with his lack of progress. I think Sharon has even heard me curse. There are too many times to count when I have said thank you, knowing that it wasn’t enough. Now that we are moving, I have to say goodbye. How do I say goodbye to these ladies who loved my son as if he was their own? How do I show them they not only became my son’s family, but mine as well? Our time is dwindling and each time that I drop him off at school and pick him up at ABA therapy, it is one less time I will be talking with someone who understands my life with my son. It will be one less time that I don’t have to explain why my son is screaming, or why he refused to eat lunch that day. It will be one less time that I can leave my son at school knowing that his teacher will push him to meet his potential each and every day. I will miss my daily texts and videos of him being the little boy we knew he could be as he finishes his math assignment with limited behavior or spontaneously slides down the slide at recess. I look back and realize that I was so busy with worry and fear, I didn’t take the time to notice my prayers were being answered. I knew my son’s autism could not be taken away so I had prayed

for the right people to be put in Broden’s path so he could grow and learn in a loving and understanding environment. I look around and he is surrounded by love and encouragement each day. His uniqueness is celebrated and welcomed every morning and ends with a hug from Sharon each afternoon after his ABA session. How could I have asked for anything more? How can I express my gratitude? A simple thank you and see you later doesn’t seem adequate. I’m not sure if there is a gift idea on Pinterest that would fit the bill either. I’ve thought of a gift card, but for some reason that idea seems too trivial and empty.

No one told me that one of the hardest things to do with a PCS move was saying goodbye to your child’s team. No one told me that the emotional connection I would have with his team would be one of the most intense relationships I would encounter raising my special needs child. Clearing housing and making transportation appointments are none of my concern. Researching things to do at our next installation are not on my mind or what I need to do once we sign for our house on the other side of this move. It just doesn’t seem that important. Last week, Sharon said, “I wish we had one more year with Broden. We’ve come so far.” My heart ached because I was wishing for the same thing, just one more year. Just one more year to see how far he can go, but then I knew that wasn’t the right answer. We need to have hope. As his mom, I need to hope and pray that there are people in Georgia that will see that my son is just as amazing as we see him. He truly can do anything. I keep telling his team that we will come back to Fort Hood. Right now, I have to think that it is a strong possibility because the thought of saying goodbye to these ladies forever is too much to bear. A gift to give? Broden is the gift.• PUZZLES & CAMO Shelley Huhtanen is an Army wife with two children, one with autism, whose husband is currently stationed at Fort Hood, TX. She is an autism advocate and currently the parent liaison for the Academy for Exceptional Learners.

eparent.com | EP MAGAZINE • June 2015 57

PRODUCTS AND SERVICES AQUATICS

(North Carolina)

(New Hampshire)

TASKS GALORE PUBLISHING INC.

(New Hampshire)

4909 Old Elizabeth Road Raleigh, NC 27816-5414 P: 866-788-2757 F: 919-789-8256 E: [email protected] www.tasksgalore.com Offering parents and professionals practical resources to help students with developmental disabilities become more independent.

CROTCHED MOUNTAIN SCHOOL

BEHAVIOR SERVICES

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

ASSISTIVE TECHNOLOGY

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

AUGMENTATIVE COMMUNICATION (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

AUTISM (Arizona)

ACCEL (ARIZONA CENTERS FOR COMPREHENSIVE EDUCATION & LIFE SKILLS) 10251 N. 35th Avenue Phoenix, AZ 85051 P: 602-995-7366 F: 602-995-0867 www.accel.org School, clinic, adult programs for autism, special needs providing education, therapy, vocational, transition, behavior services. (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

58 June 2015 • EP MAGAZINE | eparent.com

(Arizona)

ACCEL (ARIZONA CENTERS FOR COMPREHENSIVE EDUCATION & LIFE SKILLS) 10251 N. 35th Avenue Phoenix, AZ 85051 P: 602-995-7366 F: 602-995-0867 www.accel.org Behavioral services for autism, Asperger’s Syndrome, PDD-NOS, and childhood degenerative disorders.

ADVERTISE IN EP MAGAZINE Exceptional Parent is an award-winning publishing and communications company that has provided practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare for over 44 years. Reach these families, as well as the physicians, allied health care professionals and educational professionals who are involved in their care and development, by placing your advertisement in these pages.

CAMPS (New Jersey)

CAMP SUN 'N FUN 1036 N Tuckahoe Road Williamstown, NJ 08094 P: 858-629-4502 F: 858-875-1499 E: [email protected] www.thearcgloucester.org The Arc Gloucester is dedicated to being the leading force for improving the quality of life for individuals with developmental disabilities and their families.

EDUCATION (Arizona)

ACCEL (ARIZONA CENTERS FOR COMPREHENSIVE EDUCATION & LIFE SKILLS) 10251 N. 35th Avenue Phoenix, AZ 85051 P: 602-995-7366 F: 602-995-0867 www.accel.org School and adult programs for autism, special needs providing education, therapy, vocational and behavior services.

For information, contact: Stefanie Valenzano Sales & Marketing Manager Tel: 201-274-5805 [email protected]

PRODUCTS AND SERVICES (New Hampshire)

(Kansas)

VAN/VAN CONVERSIONS

CROTCHED MOUNTAIN SCHOOL

HEARTSPRING

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

8700 E. 29th Street, North Wichita, KS 67226 P: 800-835-1043 F: 316-634-0555 E: [email protected] www.heartspring.org A residential school for children with autism and other developmental disabilities.

(Ohio)

SCHOOLS/CAMPS/RESIDENCES (Arizona)

ACCEL (ARIZONA CENTERS FOR COMPREHENSIVE EDUCATION & LIFE SKILLS) 10251 N. 35th Avenue Phoenix, AZ 85051 P: 602-995-7366 F: 602-995-0867 www.accel.org Accredited school programs for autism, special needs providing education, therapy, vocational, transition and behavior services.

(New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

THERAPY (Massachusetts)

EQUIPMENT SHOP INC.

M.C. MOBILITY SYSTEMS, INC. M.C. Mobility Systems, Inc. 7588 Tyler Boulevard Mentor, OH 44060 P: 440-951-4335 F: 440-942-8028 E: [email protected] www.mcmobilitysystems.com New and used wheelchair van sales and rentals. Stores in Cleveland, Columbus, Dayton and Cincinnati.

VISION AIDS (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com Oral motor products including Flexi Cut Cups and Maroon Spoons, Tricycle Footpedal Attachments, Back Jacks.

COMING NEXT MONTH IN EP MAGAZINE

HOME IMPROVEMENT & ACCESSIBILITY eparent.com | EP MAGAZINE • June 2015 59

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