making heart-healthy food choices stress management techniques for

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PLUS: United StateS Military Section

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FEBRUARY 2016

INSIDE:

STRESS MANAGEMENT TECHNIQUES FOR SPECIAL NEEDS PARENTS AND:

EP’S ANNUAL ISSUE:

MAKING HEART-HEALTHY FOOD CHOICES

DEPRESSION IN ACTIVE DUTY SERVICE MEMBERS

DIET AND NUTRITION PLUS: GENETIC ALLIANCE

AN ACADEM Y RIC

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Endorsed & AL ME DICI NE

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DEV ELO PM

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OF

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THE GENETIC DIET

Promoting

healthy futures one child at a time.

Promoting a healthy future for your child begins with Barnabas Health. Our network of pediatricians and pediatric subspecialists treat more children than any other system in New Jersey.

Clara Maass Medical Center • Community Medical Center • Jersey City Medical Center Monmouth Medical Center • Monmouth Medical Center, Southern Campus • Newark Beth Israel Medical Center Saint Barnabas Medical Center • Children’s Hospital of New Jersey at Newark Beth Israel Medical Center The Unterberg Children’s Hospital at Monmouth Medical Center • Barnabas Health Ambulatory Care Center Barnabas Health Behavioral Health Network • Barnabas Health Home Care and Hospice Barnabas Health Medical Group • Barnabas Health Outpatient Centers

 1.888.724.7123  barnabashealth.org

CONTENTS

FEBRUARY 2016 VOLUME 46 ISSUE 2

DIET AND

NUTRITION HEALTHY CHOCES, HEALTHY LIFESTYLE

18 HOW TO MAKE HEARTHEALTHY FOOD CHOICES By Barbara B. Mintz, MS, RD GENETIC ALLIANCE

20 THE GENETIC DIET By Adrianna Evans

22 COMING TOGETHER THROUGH COOKING AND LEARNING By Gina Frisina M.S.E.D and Amy Colvin

34 24

COVER STORY

24 COMMUNICATION: THE SOCIAL “NUTRITION” BEHIND HEALTHY KIDS WITH SPECIAL NEEDS By Karen Kabaki-Sisto, M.S. CCC-SLP

ENT•

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ND

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FEATURES

MA N AGE

30 NINE STRESS MANAGEMENT TECHNIQUES FOR SPECIAL NEEDS PARENTS By Deanna Picon

PART V

40 A GPS FOR FAMILIES OF PEOPLE WITH SPECIAL NEEDS By Lauren Agoratus PART III OF A SERIES

46 STIGMA AND HEALTH CONDITIONS By Cheryle B. Gartley with Mary Radtke Klein

30

PART II

34 SHE MADE IT!

By Christine Redman-Waldeyer

38 BULLYING AND CYBERBULLYING

42 THE DIRECT SUPPORT WORKFORCE CRISIS: A PARENT’S PERSPECTIVE By Gail Frizzell

By John Spoede, PH.D., LPC-S, LCDC, NCC, CSC and Dianne Reed, Ed.D. ON OUR COVER Some children with special needs may view good health and fitness habits as tedious tasks that are forced upon them. EP magazine suggests that the right types of communication and social interaction can help parents foster healthy lifestyles that have long-lasting benefits. Section starts on page 18.

42 eparent.com | EP MAGAZINE • February 2016 1

CONTENTS

FEBRUARY 2016 VOLUME 46 ISSUE 2

DEPARTMENTS ANCORA IMPARO

4

A MEMORABLE PLACE TO LIVE By Rick Rader, MD

6

NEW PRODUCTS SIBLING TIES

8

GUARDIANSHIP By Paige Talhelm NOMINATION FORM

9

2016 TEACHER OF THE YEAR ABC: ALL BEHAVIOR COUNTS

10 A DAY IN THE LIFE OF A BOARD CERTIFIED BEHAVIOR ANALYST, PART 1 By Robert K. Ross ED.D., BCBA-D, LBA

A NEW COL UM FOR N EP!

8

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

12 WHAT’S HAPPENING AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

14 ASIAN CHILDREN WITH AUTISM AND OTHER DISABILITIES IN ASIA AND THE U.S. By H. Barry Waldman DDS, MPH, PHD, Allen Wong DDS, EDD Steven P. Perlman DDS, MSCD, DHL (Hon), and Misha Garey, DDS

62 PRODUCTS & SERVICES

54 DEPRESSION IN ACTIVE DUTY SERVICE MEMBERS AND THEIR FAMILIES By Jennifer Woodworth, PSY.D

MILITARY SECTION 54 DEPRESSION IN ACTIVE DUTY SERVICE MEMBERS AND THEIR FAMILIES By Jennifer Woodworth, PSY.D. MILITARY NEWS

58 CHILDREN OF FALLEN PATRIOTS FOUNDATION CONTINUES TO EXPAND IN THE NEW YEAR

MILITARY NEWS

58 CHILDREN OF FALLEN PATRIOTS FOUNDATION CONTINUES TO EXPAND IN THE NEW YEAR MILITARY LIFE

60 UNDERSTANDING ACCESSIBLE HOUSING: THE FAIR HOUSING ACT PUZZLES & CAMO

61 COME FLY WITH ME By Shelly L. Huhtanen

MILITARY LIFE

60 UNDERSTANDING ACCESSIBLE HOUSING: THE FAIR HOUSING ACT PUZZLES & CAMO

61 COME FLY WITH ME By Shelly L. Huhtanen 2 February 2016 • 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 46 ISSUE 2 Editor-In-Chief

■

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 Information Technology Expert

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

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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 ©2016 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 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

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

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

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

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

Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY

Mahlon Delong, MD Chair, Dept. of Neurology, Emory Univ., Atlanta, GA

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

Howard Shane, PhD Director, Communications Enhancement Center, Children’s Hospital, Boston, MA

Frank J. Murphy President and CEO, EP Foundation for Education, Atlanta, GA

Jo Waldron President and Co-founder of the Able Kids Foundation and Partner at Brain Basket, LLC, Fort Collins, CO

Kathryn O’Hara, RN Epilepsy Nurse Clinician, Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University, Richmond, VA John M. Pellock, MD Prof. and Chair, Division of Child Neurology, Virginia Commonwealth Univ., Vice President of the American Epilepsy Society (AES)

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

AN ACADEM Y RIC OF

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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.

DEV ELO PM

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

Barbara Mintz MS, RD Vice President of Healthy Living & Community Engagement, Barnabas Health, West Orange, NJ

Endorsed & AL ME DICI NE

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Stephen L. Defelice, MD Founder and Chairman of the Foundation for Innovation in Medicine (FIM)

David Hirsch, MD Medical Director at UnitedHealthcare

Esther Schleifer, MSW Clinical Social Worker, Boston, MA

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Henry G. Chambers, MD Pediatric Orthopedic Surgeon, Rady Children's Hospital; Prof. of Clinical Orthopedic Surgery, Univ. of California, San Diego

Matthew Holder, MD President of the American Academy of Developmental Medicine & Dentistry; Global Medical Advisor for Special Olympics International, Louisville, KY

Robert K. Ross Ed.D., BCBA-D, LBA President of the Autism Special Interest Group, Association for Behavior Analysis International, Senior VP at Beacon ABA Services of MA & CT

AM E

Ronald G. Blankenbaker, MD Univ. of Tennessee Health Science Center, Chattanooga, TN; President, American Association on Health and Disability

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

eparent.com | EP MAGAZINE • February 2016 3

ANCORA IMPARO

RICK RADER, MD

■

EDITOR-IN-CHIEF

A Memorable Place to Live The leading cause of Alzheimer’s disease and related dementias is aging. And that applies to all of us.

It had to happen. It’s been in the cards all along. We’re getting older. And it now applies to all of us. The “all of us” applies to individuals with intellectual and developmental disabilities who had historically been relegated to shorter lifespans. And while that deserves the celebratory release of the white doves, there is another side to that achievement. The leading cause of Alzheimer’s disease and related dementias is aging. And that applies to all of us. For those of us working in the field of developmental disabilities (from front line direct care staff to neurologists) we see it every day. Our friends, our patients, the people we support, are experiencing the ravages of these degenerative diseases. There is an interesting aside to this phenomenon and that is how we “neuro-typicals” can relate, empathize and experience these changes in both those we support at work, and those we are growing to expect to support in our own families (and selves). It has become the singular level playing field. It is best known for its “memory robbing” manifestations, although the disease has many other game- changing arrows in its quiver. Mark Twain’s genius provides us with this observation: “When I was younger, I could remember anything, whether it had happened or not; but my faculties are decaying now and soon I shall be so I cannot remember any but the things that never happened. It is sad to go to pieces like this but we all have to do it.” The field has not stood idly by as sheer observers of the torment that dementia provides. There have been multiple positive and promising programs aimed at learning how to better support individuals with intellectual and developmental disabilities and dementia. The National Task Group on Intellectual Disabilities and Dementia Practices, cofounded by Drs. Matthew P. Janicki and Seth Keller, have lead the way in creating a national movement dedicated to enlisting 4 February 2016 • EP MAGAZINE | eparent.com

researchers, academics, clinicians, policy makers, families, payors—and most importantly, the “trench-based direct support professionals”— in creating, identifying, evaluating and promoting the best practices. The National Institutes of Health (NIH), in cooperation with the Administration for Community Living, creates and sponsors ongoing webinars addressing the key issues of ID and Dementia. The International Association for the Scientific Study of Intellectual and

With that as background for the ongoing efforts at identifying best practices, there is a “pearl” that is available for “prime time.” Last year, the Special Hope Foundation (www.specialhope.org), a funder dedicated to supporting innovative healthcare projects for the ID/DD community awarded a grant for the purpose of ascertaining the efficacy of how “telemedicine” could assist community providers with expert distant consultation in supporting

WORLD CLASS: James (left) with Kevin. James has been working with individuals with a dual diagnosis, and has been assigned to our most complex and challenging individuals. Developmental Disabilities is the global body that is promoting work in this area. Virtually every one of the Down syndrome associations has pulled out all the stops in working and contributing to this area as individuals with Down syndrome share an increased risk for developing Alzheimer’s disease. Even the Special Olympics (best known for their optics of dedicated athletes crossing the finish line with determined expressions) has begun to look at dementia as an influencer in the careers of their aging athletes.

individuals with intellectual disabilities and dementia. While the program is still ongoing, one component of the project has already bore fruit. The team (internally known as the Dementia DOGS; for Dementia Options, Guidance and Strategies) sent two of its members to the Orange Grove Center (where I have the pleasure of working) to form and cement a “face to face” working relationship (one of the “lessons learned” from the grant) with our dementia team. Dr.

WHAT’S HAPPENING

Lucy Esralew, a neuro-psychologist and Kathryn Pears, a noted trainer in dementia practices and protocols, came to Chattanooga to research the best methodologies for an effective “telemedicine” consult. Patti Wade, the Orange Grove point person for dementia care, suggested that Dr. Esralew should interview one of our direct support professionals (DSP) assigned to support an individual with a high suspicion of entering the early stages of dementia. The “pearl” was a result (“gift” would be a better word) of Lucy’s interview with the DSP. James Massengale has been a direct support professional for five years. While working as a full time DSP, he has also attended college in his pursuit of earning a degree in education. James is one of those rare individuals who has a natural affinity in understanding the unspoken needs of people. This gift, coupled with the mentoring of Patti, has produced what I believe could be the poster boy for supporting individuals with dementia. His strengths have been in working with individuals with a dual diagnosis (intellectual disability and mental illness) and as a result he has been assigned to our most complex and challenging individuals. Currently he is supporting Kevin Gibson, an individual with Down syndrome and behavior that suggests early signs of Alzheimer’s disease. Lucy sat down to speak to James in the pursuit of better understanding the informational, technical, emotional and behavioral needs of both the individual and the DSP. Lucy is that rare clinician that recognizes that the “dementia care equation” has multiple moving parts. After a fruitful exchange of Lucy pursuing James’ ideology and vision of what constitutes collaborative and comprehensive dementia care (including resources, boundaries, decision making, autonomy, ongoing reality checks, benchmarks, environment, communicating with family, colleagues, and friends and the all-important issue of non-negotiables), Lucy took a sip of coffee and said to James, “If you could boil down

the most effective ‘mind-set’ for successfully supporting an individual with dementia, what would that be?” James thought for a moment and delivered what I consider to be one of the most significant insights relating to the art and science of dementia care. “That’s simple, Dr. Esralew, I live in his world.” “I live in his world,” is indeed the enchilada statement about supporting people with dementia. Throw in all the phrases that relate to the words of a change agent, “aha moment,” “eureka,” “luminous,” “refulgent,” “lucent,” James’ words gave flight to all the “high fives” that caregivers provide for each other. Lucy had managed to extract from James a “living blueprint” for the successful support of individuals earmarked by dementia. While the legions of professionals continue to explore best practices, we have been provided a cornerstone, a foundation, and a “north star” to build on. And from what I learn from Charles, Patti, Lucy and Kathryn and their peers everywhere, every day, “living in his world” (for a period of time) can possibly be the most memorable place to learn to live better in our “own world.” (With special thanks to The Dementia Dogs “TeleMentoring” Team: Dr. Seth Keller, Dr. Lucy Esralew, Kathy Service, Kathryn Pears, Dr. Phil McCallion, Shan Raju and Dr. Rick Rader; also Patti Wade, AmyJo Schamens, Melissa McNish, James Massenglae, Kevin Gibson, The Orange Grove Center and The Special Hope Foundation.) •

“I live in his world,” is indeed the enchilada statement about supporting people with dementia.

ANCORA IMPARO In his 87th year, the artist Michelangelo (1475 -1564) is believed to have said “Ancora imparo” (I am still learning). Hence, the name for my monthly observations and comments. — Rick Rader, MD, Editor-in-Chief, EP Magazine Director, Morton J. Kent Habilitation Center Orange Grove Center, Chattanooga, TN

AUTISM SCIENCE FOUNDATION OFFERS IMFAR TRAVEL GRANTS TO FAMILIES & CAREGIVERS

T

he Autism Science Foundation, a notfor-profit organization dedicated to supporting and funding autism research, recently announced that is offering a limited number of grants to parents of children with autism, individuals with autism, siblings, special education teachers, students and other stakeholders to support attendance at the International Meeting for Autism Research (IMFAR), to be held in Baltimore, Maryland from May 12 to 14, 2016. Awards of up to $1000 can be used to support reimbursement for registration fees, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate. IMFAR is an annual scientific meeting convened each spring to promote, exchange and disseminate the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR). Awardees will be expected to provide a written summary of their observations and experiences to share with the general public. To apply, send a letter to [email protected] describing why you want to attend IMFAR and explaining how you would share what you learn there with the broader autism community. Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins. In the subject line please write: IMFAR Travel Grant. Grants are awarded only to US residents over 18 years of age. Letters must be received by midnight eastern time on February 29, 2016. Recipients will be announced in late March. Additional application information is available at www.autismsciencefoundation.org/what-wefund/apply-for-IMFAR-travel-grant • eparent.com | EP MAGAZINE • February 2016 5

NEW PRODUCTS MAKE A SOUND AND MOVE AROUND Make a Sound and Move Around is designed for use by toddlers and young children to nurture coordination, speech, sensory integration and social skills. It is a collection of 16 songs and activities. There is an accompanying “how to” booklet is filled with activity ideas and resources for parents and teachers. POCKET FULL OF THERAPY PO Box 174 Morganville, NJ 07751 Telephone: 732.462.4474 Fax: 732-462-4456 Email: [email protected] Web: www.pfot.com

ATLAS WALKER Atlas Walker is designed for use by children with mobility disabilities associated with cerebral palsy, traumatic brain injury and muscular dystrophy. It is designed to encourage active weight bearing in young children. It features a height-adjustable frame, which has a swivel seat to allow hip movement when walking. This allows the users to develop their own gait pattern. The walker features: height, angle and depth

adjustable handgrips; prone angle adjustments; and four castors with rear brakes. It also has adjustable suspension to provide customized support and lift for the user. LECKEY ASSISTIVE TECHNOLOGY PRODUCTS 19C Ballinderry Road Lisburn, BT28 2SA United Kingdom Telephone: 0800 318265 (02892 600750)

CHILDREN’S POTTY SEAT This Children’s Potty Seat is designed for use by children with limited upper and lower extremity mobility as a result of cerebral palsy, developmental delays, or stroke. It is height adjustable to offer as much comfort as possible while remaining secure. The removable pan allows it to be washed with ease while remaining hygienic. The potty also comes supplied with lap and shoulder straps to offer addi-

tional support while ensuring that the user is secure as possible. The removable pan can be autoclaved at 85 degree Celsius for a maximum of three minutes. COMPLETE CARE SHOP Unit 1A, Brook Mill Estate, Station Road, Wrea Green Lancashire, PR4 2PH United Kingdom Telephone: 0845 5194 734 Fax: 01772 681616 Web: www.completecareshop.co.uk 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 February 2016 • EP MAGAZINE | eparent.com

NEW PRODUCTS BOARD BUG ADVANCED DOIDY CHILDREN BABY & CHILD MONITOR NOSEY CUP The Board Bug Advanced Baby and Child Monitor is designed for use by caregivers who may be hard of hearing. It consists of two lightweight portable units that can be worn by parent and child. It provides monitoring of a baby or child through the various stages of growth and is designed to alert parents if a baby is crying or a toddler has wandered off out of range. The parent’s unit also functions as a digital watch and alarm, while the antitamper baby or child monitor can be worn on the wrist or attached to a crib or stroller. It can be set to sound an alert when movement or crying is detected, when the room temperature is outside a pre-set range or to notify parents of feeding times. Alert options include vibrating, ringing or flashing. For toddler monitoring, the range can be set to near, mid, or far distance and sound an alert if the toddler wanders out of the selected range. The parent’s unit can activate the child’s unit to sound an alarm which will help locate them if they wander off. The child's unit also includes a panic button that an older toddler or child can be taught to use should they need it. ASSIST IRELAND Citizens Information Board 7th Floor, Hume House, Ballsbridge Dublin, Ireland Email: [email protected] Web: www.assistireland.ie

Maddak Pediatrics’ Doidy Nosey Cup is designed for use by children with drinking and limited upper extremity strength and coordination. There are handles on each side for a secure grip. The angle provides space for nose and eye glasses, while making drinking easier and more controlled. SP ABLEWARE (formely Maddak, Inc.) 661 Route 23 South Wayne, NJ 07470 Telephone: 800-443-4926 Fax: 973-305-0841 Web: www.maddak.com/index.php

HUSH BUDDY EARMUFF The Hush Buddy line is protective gear that is designed to block out the maximum amount of external noise. This Hush Buddy Earphones are designed for small children who will be engaged by the colorful pictures on the side of the earphones. They are padded and the headband is adjustable. They block out enough noise to decrease a chance of the “fight or flight” response. CALIFONE INTERNATIONAL, INC. 9135 Alabama Avenue, #B Chatsworth, CA 91311 Telephone: 800-722-0500 Fax: 877-402-2248 Email: [email protected]

CHILDREN'S SWITCH AND TOUCH PROGRESSIONS Children’s Switch and Touch Progressions is a switch or touchscreen activity designed for children with cognitive & learning disabilities, cerebral palsy, and fetal alcohol syndrome (FAS) who are learning to activate and when NOT to activate the switch/iPad. Music is the key reinforcement with animated scenes of life situations as the graphic elements. Many Skinner/behavioral prompts/features are built in, such as “Wait,” “Stop, please,” positive reinforcement, motivating operations, and others. RJ COOPER & ASSOCIATES 27601 Forbes Road, Suite 39 Laguna Niguel, CA 92677-1241 Telephone: 800-752-6673 Fax: 949-582-3169 Web: www.rjcooper.com Email: [email protected] eparent.com | EP MAGAZINE • February 2016 7

SIBLING TIES

PAIGE TALHELM

Guardianship It astonishes me that complete strangers read a few documents and heard an hour of testimony, and made the decision for this human being that will affect the rest of his life… even though we are the ones who have been there for him, every single day, for 18 years.

What was the biggest day of your life? Was it your wedding? Your child being born? That big promotion you’d been working towards for years? At the age of 24, I have already had the biggest day of my life. Recently, my brother turned 18, so we had to file for guardianship. That was the biggest day of my life. I feel like I have been preparing for this since Sammy was born. It has always been my vision to have him live with me once he got older. I wanted to do it to finally give my mom a break. I wanted to be able to give Sammy a somewhat normal, “away from home” experience, where his safety wasn’t a worry for any of us. I always knew I wanted to be Sammy’s future guardian and when it actually came time for the petition for guardianship, I couldn’t have been more certain that this was the right thing for me to do. The process for filing for guardianship is painstakingly long and confusing. My mom spent months filing paperwork, tracking down old documents, visiting lawyers, taking Sammy to doctor check-ups, etc. All of this, in addition to her full time job and taking care of two kids. I still have no idea how she keeps her head on straight with all of these stresses. Sammy was appointed an advocate, which was probably the most emotional thing about this entire process. For one, having an appointed advocate made it all real. Although I love Sammy, it breaks my heart to know that he needs an appointed guardian because he is unable to make decisions for himself. Secondly, when I interviewed with the advocate to explain why I wanted to be his guardian, I came away from it so distraught. The advocate had questioned me about every little detail and I almost felt like I was a criminal. For someone who often takes off work for appointments, travels two 8 February 2016 • EP MAGAZINE | eparent.com

hours to watch Sammy, and has dedicated her whole life to her brother’s cause – I came away from it feeling like I hadn’t done enough. Finally the day came and I had never been more anxious in my life. Although I know that I am the rightful guardian if anything should ever happen to my mom, I had myself worrying – what if these strangers don’t see how close Sammy and I are? How much he means to me? What if the thing I had been working towards all these years didn’t work out? How would I deal with it? What would happen to Sammy? I had never been to a court hearing. I could imagine it being like the shows I see on TV. It really was funny to me though, that this was a hearing for someone with special needs and when Sammy came in with his music on, they informed us that it was absolutely unacceptable. Sammy was put in a side room (still in the court room) with our cousin, where he could listen to his music freely and wander around. But really? Even though I understand that it may make things difficult to hear, this was HIS hearing. Let’s at least give him the decency to pretend that he could understand a little of what’s going on. Or even that we’re all here, based on the fact that someone has special needs – and couldn’t we make little exceptions? So, after months of preparation… the hearing was over. Just like that. The decision wasn’t even made there that day in the courtroom; we had to wait almost two weeks to hear back! I was named alternative-co guardian rather than co-guardian. This means that if anything should happen to my mom, or Sammy’s dad, I would step in as the other guardian. However, our goal was to have all three of us as equal

guardians. Although I am still a guardian, I was totally crushed. This was the most important decision and plan of my life. I couldn’t believe that I wasn’t “good enough” to be one of Sammy’s main guardians. Although I am still a big part of his guardianship, I felt like I was named as a “just-in-case” guardian. Even though I know better, it was like the judge saw me as not doing what I needed to be doing to be his guardian. I am happy that there are things in place like this to keep people like Sammy safe and free from being taken advantage of, with them being over 18 with special needs. But it also astonishes me that complete strangers read a few documents and heard an hour of testimony, and made the decision for this human being that will affect the rest of his life…even though we are the ones who have been there for him, every single day, for 18 years. Sammy will be taken care of, regardless of the guardianship hearing, and that’s all that matters. And I cannot wait for us to finally live together on our own together. • SIBLING TIES Paige Talhelm, 23, lives in the Baltimore area and will begin pursuing her Master’s degree in Education of Autism & Pervasive Disorders at Johns Hopkins this coming fall. She is currently a Director at PALS Programs, an advocate for The Next Step Programs, and leads a support group for siblings of individuals with disabilities. She is the older sister of two brothers, Sammy and Jack. Sammy, 17, has autism, is non-verbal, and is not toilet trained. He is the sole reason for Paige’s push to help individuals with special needs. She hopes to one day create a program for Autism treating adults over 21 with job searching, continuing education, learning life skills, and to increase their independence. Read more about Paige’s life as a sibling of autism on her blog: www.sammyssister.weebly.com

NOMINATION FORM Send in your nominations now! Deadline is June 30, 2016

EP MAGAZINE’S

2016 TEACHERS of the YEAR AWARD SECTION 1

SECTION 2

NAME & POSITION OF THE TEACHER BEING NOMINATED:

NAME & POSITION OF THE PERSON NOMINATING THE TEACHER:

______________________________________________________________________________

_________________________________________________________________

PHONE NUMBER:

PHONE NUMBER:

______________________________________________________________________________

_________________________________________________________________

EMAIL ADDRESS:

EMAIL ADDRESS:

______________________________________________________________________________

_________________________________________________________________

SCHOOL: ______________________________________________________________________________

SCHOOL ADDRESS: ______________________________________________________________________________

SECTION 3 REASON FOR NOMINATING THE TEACHER (UP TO 10 SENTENCES. PLEASE USE A SECOND SHEET IF NEEDED): ___________________________________________________________________________________________________________________________________________________ ____

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Please scan your completed form and email to: [email protected] More details on EP’s Facebook page. Thank you! eparent.com | EP MAGAZINE • February 2016 9

ABC: ALL BEHAVIOR COUNTS

ROBERT K. ROSS ED.D., BCBA-D, LBA A NEW COL UM FOR N EP!

A Day in the Life of a Board Certified Behavior Analyst, Part 1 A big part of my job is to carefully analyze details of interactions between the learner and the people in that environment when the behavior occurs. This is the first in a series of articles highlighting the roles, responsibilities and services of a Board Certified Behavior Analyst (BCBA). Early Intervention Intensive Behavioral Intervention Supervision:

EARLY INTERVENTION INTENSIVE BEHAVIORAL INTERVENTION SUPERVISION

I begin my day by traveling to the home of a two-year nine-month old child boy (Joe) who is diagnosed with autism spectrum disorder (ASD) and is receiving 25 hours of carefully structured teaching and family support, based on the principles of applied behavior analysis (ABA). I supervise the staff who do the direct teaching and work with the family to help them better understand how Joe learns. He has made great progress since treatment began at age two. He is now verbal and is now rapidly gaining the social and interactional skills that he did not demonstrate at the time of his initial diagnosis. I begin my work, by sitting down with mom and the staff, to review the data on the goals and objectives we are working on. We see in the data a continuing improvement in most goals, but we focus on two graphs which show that Joe is struggling to learn the skills. These skills are “turn taking” and “initiating talking to others.” We have been working on turn taking with Joe and his sister and improving his initiation of social interactions with others (in particular other family members and neighbors). After a brief discussion, and review of what is not working, we decide to use video modeling as a prompt for these programs. We chose this because the verbal cues were getting him to talk (imitate us), but were not resulting in independent initiation. Challenges with initiation are a common problem in children with ASD, and a wide range of pro10 February 2016 • EP MAGAZINE | eparent.com

cedures to address this have been identified in the research that helps; video modeling is just one of these procedures. Also, we had used video modeling effectively in teaching other play routines. I quickly wrote up a set of procedures (skill program) and then created a video model using mom’s phone. To make sure that the program would work, I implemented the procedures with Joe. Once he was successfully initiating the modeled language, I had the staff and mom practice the program. After some practice and feedback, they both were able to run the program. We continued to review the programs and data until mom raised a concern about how Joe was reliably following verbal directions during our sessions,

out to other rooms. First we had mom provide reinforcement to Joe for following directions (from staff in the teaching session). Next we had mom give the directions in session while continuing to reinforce instruction following. Once Joe was reliably following them for mom in this context, we moved to other settings in the home and outside in the yard. We used this approach with several types of directions from mom to ensure broad generalization of instruction following. This systematic approach to help ensure generalization is somewhat time intensive, but it worked very well for mom and Joe. After completing all of the services documentation requirements (case notes and other paper work), I left and drove to a local public school where I would be consulting with a kindergarten team regarding the challenging behavior of a student in school.

BEHAVIORAL CONSULTATION PROVIDED IN LOCAL PUBLIC SCHOOL

but often ignored the same instructions from mom after we left. This is also a fairly common problem for many children with ASD, so I suggested that we follow a systematic procedure for supporting responding to mom (we refer to this as generalization of skills). We began practicing instruction following in the teaching sessions and carefully moved to other activities in the room, then

Team Meeting: My visit begins with a meeting of the kindergarten staff. The staff and administrators described their concerns about the disruptive behavior of a child who is new to their classroom. Prior to my visit, that school had obtained parental consent for me to review assessments, reports and other relevant data about the student which I had reviewed before coming to the school today. The first thing we did was meet to clarify the goals for today’s visit. As is often the case, the staff tell me what problem behavior looks like (e.g., being off-task, bothering peers and not following teacher verbal directions). They also make it clear to me that they want the child

to stop doing these behaviors. The staff also report that the child appears to be trying to “avoid” completing work. I politely explain that my role is not just stopping “bad” behavior, but looking at and changing the routines and instructional supports in place so that they more effectively support positive behavior. I note that creating new routines is always easier than stopping bad ones. The next step for me is to observe the child and determine what the child has learned well and now does independently. I also need to identify skills that have been worked on for a long time, but without much success. I want to be able to describe the difference between effective teaching procedures for this child with those teaching practices that have not been successful in helping this child learn skills or positive behavior. The teachers are able to provide me with a number of useful examples of both effective learning and ongoing problem behavior. With this information to guide my observations, I then go to the student’s class for some direct observation. It is often said that “the devil is in the details.” In my view, it is the answers that lie in the details. A big part of my job is to carefully analyze details of interactions between the learner and the people in that environment when the behavior occurs. Behavior analysts rely on data from direct observation of behavior, we collect objective information about what happens before and critically, what happens after problem and adaptive behavior occurs. The information obtained allows for the development of hypotheses (an educated guess made from facts about behavior) as to why the child has learned to engage in a particular form or forms of behavior in certain conditions and not others. I am often surprised by the prevailing notion that only adaptive behavior, (reading, writing, talking etc.) is learned. Many people see problem behavior and attribute it to a disorder or disability rather than learning processes. Behavior analysts do

not draw this distinction. We seek to understand how the current environment makes a particular behavior functional for the person who is doing it. That is why observation of the behavior is so important. Classroom Observations: In the classroom I am introduced as a person who wants to become a teacher and has heard that their teacher is awesome, so I wanted to watch her and learn how to be a better teacher. This allows the students to perceive that I am watching the teacher and not them. I find that this minimizes child anxiety about my presence and increases the chances that students will not be overly reactive to my presence. While watching the student, I notice that whenever the child is off-task, the teacher comes over to speak with the student to verbally explain the classroom rules to the child. I observe this happen 15 times in a 45-minute block of time, or roughly once every three minutes. It is important to note that while the teacher perceived that the child was trying to “avoid” work, the data suggested that the child was actually seeking teacher interaction. Objective data collection is a critical part of the work of a behavior analyst; it allows us to move from subjective (and often incorrect) interpretation of the reasons for behavior, to more objective analysis of the effects of a person’s behavior on the behavior of others. I also observe a small group activity where a structured routine involving lots of teacher interaction. I note that almost no off-task or disruptive behavior occurs in this activity. Staff working with the child were all in agreement that he “likes teacher and adult attention,” but they had not thought that the kind of attention they were giving him after problem behavior might be something he wanted. In their view, they were reminding him of rules or reprimanding him for problem behavior, not reinforcing him. The idea that these forms of teacher attention could be preferred by him had not occurred to them.

“It is often said that ‘the devil is in the details.’ In my view, it is the answers that lie in the details.”

I suggested that we test the idea that offtask and disruptive was something he did to make the teacher talk to him more frequently. First, we needed to see what was objectively true – did he prefer being left alone (avoiding work) or would he rather have teacher’s attention than be left alone? To do this, we taught him a new routine where he could do one task and immediately get a conversation with teachers, or he could do a similar task and as soon as he was done, they would leave him alone for three minutes. After only a few times, he began to ask for the task that resulted in teacher attention. After the fifth time we did this, he only asked for the task that resulted in teacher attention. This was a fairly good demonstration of his preference for teacher attention over being alone. It also showed that he would ask to work to get teacher attention. To obtain additional objective data showing that he was using off-task and disruptive behavior to get teacher attention rather than avoid academic work, we tried a few similar activities and saw the same result. Once we were convinced by the learning data, I left the classroom to draft some general classroom and instructional recommendations. • Next Issue: Writing Behavioral Guidelines and Teaching Procedure Recommendations, and more. ABC: ALL BEHAVIOR COUNTS Robert K. Ross Ed.D., BCBA-D, LBA is the Senior Vice President of Curriculum and Research at Behavioral Education Assessment and Consultation Inc. (BEACON Services of Massachusetts and BEACON of Connecticut). Dr. Ross is also President Massachusetts Association for Behavior Analysis. He received his doctorate in educational leadership from Nova Southeastern University and his master's in applied behavior analysis from Northeastern University. He is the co-director of the BCBA certification program at Cambridge College in Cambridge, Massachusetts. In addition to his teaching and research roles at BEACON, he consults with programs and works directly with individuals with autism and Asperger's Syndrome as part of his caseload responsibilities at BEACON. Dr. Ross has presented more than 100 applied research poster presentations, workshops, and symposia at ABAI conferences and authored several related articles.

eparent.com | EP MAGAZINE • February 2016 11

HAPPY VALENTINES DAY

for your little sweetheart

FELTMAN BROTHERS’ PIMA COTTON COLLECTION From the moment you first see and feel the new Pima Cotton line from Feltman Brothers, you’ll be captivated. With their brand new layette collection, this steepedin-tradition company has combined their beautiful smocked and embroidered trademarks with baby-friendly functionality to create items for everyday comfort and enjoyment!

PRETTY IN PINK: (Above) Girls Pima Cotton Embroidered Bow Blanket, Romper, Hat and Bib. (Left) Boys Pima Cotton Smocked Diamond Romper and Hat. The Pima collection is the perfect choice for comfort, style, and everyday wear. Made exclusively from the softest cotton grown in Peru, parents will be in awe over how Feltman Brothers stayed true to their heirloom quality while providing items that are perfect for babies the moment they arrive in this world. Parents will love every-

thing about the Pima Cotton layette items – from baby’s head to baby’s toes. Whether you’re trying to find the perfect gift for a special baby shower or something for your own little sweetheart, you’ll love the new Pima collection for baby boys and girls.

ABOUT FELTMAN BROTHERS

Since 1916, Feltman Brothers has been providing the world with authentic and timeless clothing for babies in classic tradition. This reputation is the result of a strong commitment to quality, incomparable fabrics, exclusive designs, and attention to detail. Feltman Brothers designs reflect the elegance of vintage styling for children from newborn through toddler, including babies take-home attire, layette needs, sacred occasion gowns and accessories, holiday wear, and special occasion wear. Feltman Brothers use of

12 February 2016 • EP MAGAZINE | eparent.com

embroidery is a skilled craft and trade, one that Philippine mothers pass down to their daughters, working on machines that are almost 100 years old. Feltman Brothers is, and always has been, a family business, now three generations deep. The company will celebrate its 100 year anniversary in 2016. Find more beautiful designs from Feltman Brothers by visiting their website at www.feltmanbrothers.com You can also follow them on Facebook, Twitter, Pinterest and Instagram.

HAPPY VALENTINES DAY THE OLLIE SWADDLE

B

aby will go "gaga" over this cozy swaddling solution! Designed to decrease fussiness and assist in self-calming, the Ollie Swaddle also improves the quality and duration of sleep! Features elasticity to allow freedom of movement and an opening at the bottom for hassle-free diaper changes, as well as custom-developed moisture wicking material to reduce overheating. Also has a custom closure with soft Velcro, which allows for variation of tightness, depending on the need and size of the infant. The ease of use eliminates frustration and promotes periods of alert and focused interaction between caregiver and infant, thus enhancing bonding (which is essential to all facets of neurodevelopment). For ages 0 to 4 months, the 92% polyester/ 8% Spandex Ollie Swaddle was made to grow with your baby. Available in Blue Stripe and Pink Stripe, The Ollie Swaddle retails for $48.00 at TheOllieWorld.com.

FIVE HELPFUL VALENTINE’S DAY TIPS TO PARENTS FOR A FULFILLING RELATIONSHIP ustaining a healthy and fulfilling marriage or relationship while raising a child with special needs is no easy task. Managing all aspects of a child’s daily living – including personal needs, school activities, therapy and medical appointments – can leave little time for oneself, much less a partner. Deanna Picon, founder of Your Autism Coach, LLC and author of The Autism Parents’ Guide to Reclaiming Your Life, advises parents to apply these simple tips for keeping their relationship strong and making their marriage a priority again. 1. Give yourself permission to enjoy. Parents of special needs children may feel guilty for a having a good time, even if it’s only for a short time. There is no reason to feel bad for wanting some time with your spouse to resume the activities, events and hobbies you used to do before having kids. In fact, it’s probably the best thing you can do for your family. Every couple needs and deserves some time together to re-connect and keep the emotional and communication bonds strong. 2. Schedule some couple time. It can be as simple as scheduling “fun nights” for yourselves on a weekly or monthly basis. Go bowling or to a movie. Eat out. It doesn’t have to be a 3-course meal at a 5 star restaurant. A quick bite at a local diner is fine. The important thing is that you’re spending quality time together without try-

S

ing to cook dinner, tend to your child’s needs, and clean the house at the same time. 3. Ask for help when you need it. There’s no shame in asking a family member or close friend to stay with your child for a few hours so you and your partner can have some quality time and a muchdeserved break. You’ll be pleasantly surprised how much people want to help and support you. Let them come over to take care of your child in your home. You’ll know your child is safe and well-cared for, and there’s no child care costs. 4. Appreciate each other. Show appreciation for all the wonderful or demanding things you are doing as partners and parents. Tell each other, “You’re doing a great job” every once in a while. Thank each other for acts of kindness, such as letting you sleep late some mornings. 5. Express your love. Always remember, attention and affection for each other doesn’t have to be reserved for just date nights and special occasions like Valentine’s Day. A little extra effort on both sides can generate ongoing intimacy. A kiss goodnight, a gentle touch as you pass in the hall, a love message by e-mail or text. These little gestures can mean so much. Your Autism Coach, LLC provides superior coaching services and seminars that address the issues and concerns of parents of special needs children. • eparent.com | EP MAGAZINE • February 2016 13

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

Asian Children with Autism and Other Disabilities in Asia and the U.S. BY H. BARRY WALDMAN DDS, MPH, PHD, ALLEN WONG DDS, EDD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON), AND MISHA GAREY, DDS WHAT IS AUTISM SPECTRUM DISORDER? “Autism spectrum disorders (ASD) are a family of neurodevelopmental disorders of rapidly increasing incidence that are characterized by impairments in communication and social interaction along with restrictive and repetitive behaviors. The brain tissue of patients with autism shows subtle developmental abnormalities, specifically in those areas concerned with language, facial expression, movement, and social behavior.” 1 “ASD originally was thought to be a static, inheritable neurodevelopmental disorder, and our understanding of it is undergoing a major shift. It is emerging as a dynamic system of metabolic and immune anomalies involving many organ systems, including the brain, and environmental exposure… How gastrointestinal (GI) factors are related to ASD is not yet clear. Nevertheless, many patients with ASD have a history of previous antibiotic exposure or hospitalization, GI symptoms, abnormal food cravings, and unique intestinal bacterial populations, which have been proposed to relate to variable symptom severity…”2

IN ASIA “Because of stigma, lack of awareness about mental health and poor medical infrastructure, few autism prevalence studies exist outside of the U.S., Canada and the U.K. ”3 “In urban areas of South Korea, some families of children with developmental delays will go to great lengths to avoid a diagnosis of chapae, or autism. They think of it as a genetic mark of shame on the entire family, and a major obstacle to all of their children's chances of finding suitable spouses. The stigma is so intense that many Korean clinicians intentionally misdiagnose these children with aechak changae, or reactive detachment disorder — social withdrawal that is caused by extreme parental abuse or neglect. ‘The parents prefer this [diagnosis] because the mother can take the bullet and protect.’ everybody else,”3

“Autism in India also needs to be viewed in the context of attitudes toward disability more generally. Traditionally there has been stigma attached to disability – shame, embarrassment, concerns about inadequate parenting – perceptions that are shared by many countries worldwide. Autism comes with unusual behaviours, fuelling beliefs about what affected the children. Historically, stigma ensured that families hid their strange children. Since autistic children were not seen, they did not exist, which acted as a barrier to awareness. It isolated families, creating a cycle of ignorance and superstition.” 4 “The term for disability in Chinese is ts’anchang or ts’anfei which means disabled, with obstacle or useless. A person with disability normally will be associated with helplessness or hopelessness. The birth of a child with physical or intellectual disability is perceived as evidence of a parent’s bad karma from the past, or a curse from ancestors. Traditional Chinese mothers who gave birth to a child with disability have been reported to blame themselves for violating cultural taboo, for examples using sharp instruments, visiting cemetery, or eating the wrong kind of food.”5 “Traditional Chinese medicine views Autism as a “Yin” disorder, manifested by social isolation, lack of communication and apathy. • Acupuncture has benefits in relieving core symptoms of autism (social and communicative impairments) and associated problems. It is gaining popularity in China as a way to treat autism. • In Beijing and Shanghai, much of the treatment for autism involves sit and relaxation. • All services for children with autism were in the private sector. • Greatest challenge is the severe shortage of adequately trained personnel to address the needs of children with autism.”6

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. 14 February 2016 • EP MAGAZINE | eparent.com

TAKING NOTICE: Hopefully, the particular care, interest in, and support of Asian-American youngsters with disabilities and their heritage, traditions and society will not be unnoticed because of the “limited” numbers. The first prevalence studies in any region typically find low numbers. For instance, a study in Brazil found 27.2 cases of autism per 10,000 children. A report from Oman found 1.4 cases per 10,000. Similarly small numbers have come out of studies in China (16.1 per 10,000) and Indonesia (11.7 per 10,000). 7-9 “These low rates are likely to be the result of the methods used, experts say.”3

IN THE UNITED STATES The prevalence of special health care needs also varies by the race/ethnicity of the child. Among children (<18 years) the prevalence is: • Highest among non-Hispanic Black children (17.5%) and nonHispanic White children (16.3%), and • American Indian/Alaska Native children (13.5%), Native Hawaiian/ Pacific Islander children (12.3%).and Hispanic children (11.2%). • Lowest among Asian children (8.0%).10 Barriers: Individuals with developmental disabilities constitute a minority population and Asian Americans with developmental disabilities are a “double minority” population within the social service delivery system. • Language and communication difficulties. • Lack of knowledge concerning mainstream service delivery system. • Perceived cultural differences. • Being a “minority within a minority” in the service delivery system. • Individual differences within families and differences among Asian ethnic groups. • Lack of resources to meet needs within the family. 11 • Perceived cultural differences (e.g. The perception that reliance on government support services is not appropriate). 11, 12 Autism: “Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities (11states) in the United States has been identified with autism spectrum disorder (ASD). This new estimate is

roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.”10 Levels of intellectual ability vary greatly among children with autism, ranging from severe intellectual challenges to average or above average intellectual ability. The CDC study found that almost half of children identified with ASD have average or above average intellectual ability (an IQ above 85) compared to a third of children a decade ago. 13 The percentage of students with disabilities served under IDEA (Individuals with Disabilities Education Act – ages 3 to 21 years) for specific learning disabilities was lower among Asian children (23%) than among children overall (35%). However, the percentage of students with disabilities who received services under IDEA for autism was higher among Asian children (18%) than among the overall proportion of all children (8%). This is a reflection of the fact that, while Asian children have about the same prevalence of ASD in special education classes as other children, they have a lower prevalence of other disabilities. 14 • Among states with the highest percentage of Asian residents, the proportions who receive services under IDEA for autism were: Proportion with autism Hawaii . . . . . . . . . . . . . . . . . . . .9.0% California . . . . . . . . . . . . . . . . . .6.7% New Jersey . . . . . . . . . . . . . . . . .7.9% New York . . . . . . . . . . . . . . . . . .6.5% Washington . . . . . . . . . . . . . . .15.0% Note: The Census Bureau does not publish data for most states with small proportions of Asians to protect the confidentiality of respondents. eparent.com | EP MAGAZINE • February 2016 15

• ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189). 13 • The total costs per year for children with ASD in the United States were estimated to be as much as $60.9 billion (2011 US dollars). This significant economic burden represents a variety of direct and indirect costs, from medical care to special education to lost parental productivity.15 Using a series of national data sets, it was reported that costs of caring for a child with parent-reported ASD, including health care, education, ASD related therapy, familycoordinated services, and caregiver time, totaled $17,000 per year. 16 The cost of supporting an individual with an ASD and intellectual disability during his or her lifespan is $2.4 million; $1.4 million for an individuals with ASD without intellectual disability. The largest cost components for children are special education services and parental productivity loss. 17 • In a study of parent awareness, attitudes and experience with autism genetic testing, it was reported that Asian parents and those with low socioeconomic status expressed lower awareness and tended to have more limited access to autism genetic testing.18

HEALTHCARE During past decades, there has been an extensive series of studies regarding the health status and delivery of services for white, black and (increasingly for) Hispanic children with disabilities. However, there has been limited similar attention to Asian children with comparable conditions. Nevertheless, available data regarding the general population of Asian children may provide some indication of health and services for Asian children with disabilities. “Asian/Pacific Islander children experience significantly better medical and oral health status than white children… including lower risks of limited abilities; needing or getting special therapy; emotional, developmental or behavioral problems needing treatment or counseling; learning disabilities; ADHD; depression or anxiety; behavioral problems; bone, joint, or muscle problems; and developmental delay.”19 Among those needing specialty care: • Approximately half of Asian/Pacific Islanders experience problems getting specialty care (the highest for any group). • They also experience higher unmet dental care needs because of transportation problems, the dental professionals not knowing how to provide care, and practitioners not accepting the child’s health insurance. • They had the highest rate of not having physician visits, not receiving mental health care, nor receiving prescription medications in the past year.19

OVERVIEW “The total population of Asian Americans grew 46 percent from 2000 to 2010, which constituted the largest increase of any major racial group during that period.” 20 A previous review in EP magazine emphasized the numeric increases in the Asian American population as well as the youngsters with disabilities. The article emphasized the demographic characteristics of this diverse increasing immigrant population.21 The current writing “clothes” the numbers with the cultural setting, the barriers faced by the children with disabilities and their families, and the specifics of autism as examples of the “overlooked” setting of a numerically “smaller” minority population of children 16 February 2016 • EP MAGAZINE | eparent.com

with disabilities. For example, in the 2012 to13 academic year, the number of minority children (3 to 21 years) served under the Individuals with Disabilities Act (IDEA) was: Hispanic: 1,406,536; Black: 1,189,148; Asian-American: 150,913 14 Hopefully, the particular care, interest in, and support of AsianAmerican youngsters with disabilities and their heritage, traditions and society will not be unnoticed because of the “limited” numbers. Incidentally, there were “only” 86,884 American Indian/Alaska Native children with disabilities under the IDEA program in the 2012-13 academic year. 14 • ABOUT THE AUTHORS: 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 Olympicr, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine, Private pediatric dentistry practice – Lynn MA. Allen Wong, DDS, EdD is Clinical Professor at the University of the Pacific Arthur A. Dugoni School of Dentistry, San Francisco, CA. Misha Garey, DDS is Director of Dental Services at the Orange Grove Center.

References 1. MacFabe DF. Short-chain fatty acid fermentation products of the gut microbiome: implications in autism spectrum disorders. Microbial Ecology in Health and Disease. 2012. Web site: http://www.microbecolhealthdis.net/index.php/mehd/article/view/19260 Accessed September 9, 2015. 2. MacFabe DF. Autism: Metabolism, Mitochondria, and the Microbiome. Global Advances in Health and Medicine, 2013;2(2):52-66. 3. Hughes V. Researchers track down autism rates across the globe. Web site: http://sfari.org/news-andopinion/news/2011/researchers-track-down-autism-rates-across-the-globe Accessed August 28, 2015. 4. Action for Autism. National Center for Autism India. Web site: http://www.autism-india.org/autismindiaAction Accessed August 28, 2015. 5. Ow R, Tiong TT, Goh S. Diverse perceptions of social support: Asian mothers of children with intellectual disability. Families in Society, 2004; 85(2);214-220. 6. Naqvi N. Prevalence and Services in Countries outside of Europe and North America. Web site: http://www.hunter.cuny.edu/school-of-education/special-programs-and-centers/regional-autismcenter/repository/files/NNaquviprevalenceoutsideUS.pdf Accessed August 28, 2015. 7. Al-Farsi YM1, Al-Sharbati MM, Al-Farsi OA, et al. Brief report: Prevalence of autistic spectrum disorders in the Sultanate of Oman. Journal Autism Developmental Disorder, 2011;41(6):821-5. 8. Liu D1, Wellman HM, Tardif T, et al. Theory of mind development in Chinese children: a meta-analysis of false-belief understanding across cultures and languages. Developmental Psychology, 2008;44(2):523-531. 9. Paula CS, Ribeiro SH, Fombonne E, et al. Brief report: prevalence of pervasive developmental disorder in Brazil: a pilot study. Journal Autism Developmental Disorder, 2011;41(12):1738-1742. 10. CDC estimates 1 in 68 children has been identified with autism spectrum disorder. Web site: http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html Accessed August 31, 2015. 11. Choi KH, Wynne ME. Providing services to Asian Americans with developmental disabilities and their families: mainstream service provider’ perspective. Community Mental Health Journal, 2000;36(6):589-595. 12. Baker DL, Dang MT, Yaangh CS, et al. Developing culturally responsive approaches with Southeast Asian American families experiencing developmental disabilities. Pediatrics, 2010;126 Suppl 3:S146-150. 13. Centers for Disease Control and Prevention. 2009/2010 National Survey of Children with Special Health Care Needs. Web site: http://childhealthdata.org Accessed August 31, 2015. 14. National Center for Education Statistics. Children and youths with disabilities. Web site: https://nces.ed.gov/programs/coe/indicator_cgg.asp Accessed September 1, 2015. 15. Centers for Disease Control and Prevention. Autism spectrum disorder. Web site: http://www.cdc.gov/ncbddd/autism/data.html Accessed August 28, 2015. 16. Lavelle TA, Weinstein MC, New house JP, et al. Economic burden of childhood autism spectrum disorders. Pediatrics, 2004;133(3):e520-529. 17. Buescher AV, Cidav Z, Knapp M, et al. Costs of autism spectrum disorder in the United Kingdom and the United States. JAMA Pediatrics, 2014;168(8):721-728. 18. Chen LS, Xu L, Huaqng TY, et al. Autism genetic testing: a qualitative study of awareness, attitudes, and experiences among parents of children with autism spectrum disorder. Genetic Medicine, 2013;15(4):274-281. 19. Flores G, Sandra C, Tomany-Korman, MS. Racial and ethnic disparities in medical and dental health, access to care, and use of services in US children. Pediatrics, 2008 M21(2):286-298. 20. Census Bureau. Fact for Features - Asian/Pacific Heritage Month: May 2011. Web site:http:www.census.gov/news-room/releases/archives/facts_for_features_special_editions/cb11-ff06.html Accessed August 29, 2013. 21. Waldman HB, Perlman SP, Garey M. Asian-American children the disabilities. Exceptional Parent Magazine, 2015;45(2):14-16.

HEALTHY CHOICES, HEALTHY LIFESTYLES

BARBARA B. MINTZ, MS, RD

DIET AND NUTRITION How to Make Heart-Healthy Food Choices Eating a heart-healthy diet pays big benefits, like better cholesterol and blood sugar levels, blood pressure, and weight.

While chicken wings, pizza and soda might tempt your palate from time to time, think twice! High-fat, high-calorie foods may lead to cardiovascular disease and other heart conditions. Your best weapon of defense is maintaining a healthy diet and making healthy choices. While fad diets tell you what you can't eat, it's more powerful to focus on what you can eat. Here are some tips you can take to heart! EAT MORE FISH. Fish is a good source of protein and other nutrients. It is naturally low in fat if you don’t fry it, and some fish, such as salmon, tuna, and mackerel, also gives you omega-3 fatty acids, which may cut your risk of heart disease and stroke. Two servings a week is recommended. You can also get omega-3s from ground flax seeds and chia seeds. This is helpful if you are a strict vegetarian. They also add hearthealthy fiber to your diet. EAT MORE VEGETABLES, FRUITS, WHOLE GRAINS AND BEANS. Plant foods are a powerful help in fighting heart disease. You get nutrients, fiber, and an almost endless variety of ways to cook them. Eat at two to three servings of fruit and three to four servings of vegetables. One serving of fruit is usually one piece. Vegetable servings are ½ cup cooked or one cup raw. These foods are high in antioxidants which are a compound found in them that gives them their special color. Antioxidants do what their name states: They fight the oxidative damage we get in our environment and help fight against diseases. Each color has a specific fighting mechanism. For instance, green 18 February 2016 • EP MAGAZINE | eparent.com

veggies help protect our eyes against this process. Orange and red ones help our heart to name only a few. LIMIT SATURATED FAT TO NO MORE THAN 7% TO 10% OF CALORIES. Diets high in this type of fat raise our cholesterol and increase our risk for heart disease. Check food labels to see how much saturated fat is in a serving of butter, hard margarine, salad dressing, fried foods, snack foods, sweets, and desserts. AVOID ARTIFICIAL TRANS FATS COMPLETELY. They raise your “bad” (LDL) cholesterol level. Items that may have trans fat include baked goods, snack foods (such as microwave popcorn), frozen pizza, fast food, vegetable shortenings, stick margarines, coffee creamer, refrigerated dough products (such as biscuits and cinnamon rolls), and ready-to-use frostings. Even if the label says “0 grams trans fat,” they may still have a tiny bit of trans fat; so check the ingredients list on packaged foods for “partially hydrogenated oils.” Those are trans fats. WHEN YOU USE ADDED FAT, USE FATS HIGH IN MONOUNSATURATED OR POLYUNSATURATED FATS. Fats found in canola, olive, and peanut oil do not raise your cholesterol levels. In fact, the mono unsaturated fats found in olive oil and canola oil actually help keep your “good” cholesterol or HDL levels. You still need to limit how much you use, however, even with "good" fats, because they are high in calories.

CUT BACK ON SALT. This will help control your blood pressure. Most people get too much sodium, and a lot of it comes from packaged foods. AVOID PROCESSED MEATS. This includes meats like sausages, bacon, cold cuts are high in saturated fat and sodium. Choose fish, lean cuts of meat, poultry (without the skin), low-fat or fat-free dairy, beans, nuts, tofu, and legumes. LIMIT SUGARY BEVERAGES. Water is always a better choice than soda or juice. LIMIT ALCOHOL INTAKE. The guidelines are one drink per day for women and two for men. Red wine in moderation is a good choice ENJOY EVERY BITE. When you enjoy what you eat, it’s easier to keep eating that way. READ AND COMPARE FOOD LABELS. Review how many servings the package contains and then look at the calories and fat per serving. Multiply the calories and fat by the number of servings you’re going to eat. COOK HEALTHIER. Choose grilling, baking or broiling over frying. LIMIT FOOD PORTIONS. Remember, don’t supersize! Eating a heart-healthy diet pays big benefits, like better cholesterol and blood sugar levels, blood pressure, and weight. Best of all, eating this way can taste good! •

HEALTHY CHOICES, HEALTHY LIFESTYLES Barbara Mintz, MS, RD, Vice President of Healthy Living and Community Engagement for Barnabas Health, New Jersey.

GENETIC ALLIANCE

DIET AND

NUTRITION

Online dieting has not neglected the community of dieters with genetic conditions. The rising popularity of food blogs and new diet plans has increased the availability of resources for these very specific genetic diets.

THE GENETIC DIET BY ADRIANNA EVANS he arrival of the New Year brings with it resolutions of all kinds; people everywhere promise to make the coming year better than the last. Among these resolutions are often promises to be kind, to spend more time with family, to go to the gym – and of course, to stick to a healthy diet. These days, the promise to stick to a diet often involves using websites, social media, apps, and the myriad food blogs of the Internet. The online dieting community is accessible by phone, computer, and tablet, helping dieters to stay on track every moment of the day. Even so, some dieters will lose their way and return to their old habits even before it becomes time to make the next year's resolutions. For some dieters, this isn’t an option. For people with certain types of genetic conditions, sticking to a specific diet is crucial, as even the slightest cheat has consequences much greater than simply working off the extra calories at the gym. Such conditions are caused by an inborn error in metabolism, or the body’s ability to perform the chemical reactions necessary to sustain life. Typically, with these conditions, a person will inherit one or two faulty copies of a gene, which causes one of the enzymes that carries out metabolic reactions to malfunction, or even to be completely absent. Without a functional enzyme, the initial molecular components of the reaction go unused and subsequently build up and

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wreak havoc in the body. Phenylketonuria (PKU) is a genetic condition that renders a person unable to break down the amino acid phenylalanine (PHE). Amino acids are a component of protein, so people with PKU or similar amino acid disorders can’t digest protein. They must drink a special formula, carefully weigh out every bit of food they eat, and calculate how much protein and PHE they take in every day. Without the diet, PKU and amino acid disorders will cause protein to build up in a person's body, often causing problems with eating or sleeping, which can escalate into severe symptoms such as seizures, coma, or even death. Even small deviations or cheats can have neurological consequences. Galactosemia is a similar genetic condition. People with galactosemia can’t breakdown galactose, a sugar found in all milk containing products. Consequently, these people must be on a diet free of milk and all galactose-containing foods. Untreated, galactose sugars build up in the body, causing potentially fatal symptoms such as seizures and liver damage. Fortunately, online dieting has not neglected the community of dieters with genetic conditions. The rising popularity of food blogs and new diet plans has increased the availability of resources for these very specific genetic diets. The following list of resources can be used as a guide to helpful tools online.

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. 20 February 2016 • EP MAGAZINE | eparent.com

Cook for Love is a non-profit serving the PKU community. It was founded by mothers of children with PKU who went through the intense struggle of creating palatable food that wouldn’t skyrocket their children’s phenylalanine to perilous levels. Most of their recipes were created by trained chef and founder, Brenda Winiarski. Like any recipe, Cook for Love recipes provide an ingredient list, instructions for preparation, and cook time. But unlike most food websites, they also provide exact measurements and nutrition information, including calories and PHE content, which is absolutely critical for the PKU chef. There are recipes for breads, desserts, salads, soups, entrees, even resources for planning a low protein holiday feast. In addition to their creative and flavorful recipes, Cook for Love also has some informational content about PKU for families just starting out on their PKU diet journey as well as listing many other useful informational website, cookbooks, and tools specifically designed to serve the PKU community. Cook for Love requires a login to access most of the recipes, but it’s free and simple to sign up.CookforLove.org

How Much Phe is a tool provided by National PKU News designed to make managing the low protein diet easier. Much like Cook for Love, How Much Phe was developed by individuals in the low protein diet community as a guide for others on their low protein journey. The tool has several features that low protein dieters will find useful. Dieters can search for information about the PHE content, protein content, calories, and exchanges for foods they find using information provided by the Low Protein Food List for PKU. Dieters can track their PHE and protein goals, exchange intake, and blood records by inputting their food intake. The program will track information for the day as well as over time, producing charts that allow the dieter to see trends in the form of charts and view information from previous days. The tool also allows the dieter to export this information as reports for personal or clinic use. There is also a calculator that allows dieters to determine how much of a certain food can be eaten based on weight, PHE content, exchanges, or protein content. How Much Phe is available both as a website and an

app for iPhone, downloadable from their website (a video tutorial of how to do this is available for free on their website). This website requires a paid subscription to access the information but this money does go back into the funding for improving and maintaining the program. HowMuchPhe.org

Go Dairy Free is a website created to service everyone interested in a dairy-free diet for any reason, genetic condition, milk allergy, personal interest, or otherwise. This website is no simple food blog (although you can stay updated with founder Alisa Fleming’s blog on the site). It is a comprehensive, communitycentered resource for dairy-free eaters of any level. They provide start-up guides, definitions, and plenty of other information for beginners. There is a cornucopia of recipes in every category from appetizers to entrees to milk-free substitutes, including kid-friendly recipes. They have a grocery guide, which provides recommendations on useful ingredients, milk-free brands and products, as well as useful kitchen items. Additionally, Go Dairy Free has complied a restaurant guide, which makes choosing a restaurant much easier for any dairy-free dieter. They have gathered their information from a combination of reader experiences and information from the restaurants themselves. Depending on the restaurant, there is information on acceptable menu choices, milk-containing products to avoid, and whether or not the food processing is done in a plant that also processes dairy (for those with sever dairy allergies). Go Dairy Free has a store, which sells its related books, but all the other information is completely free and accessible without a login or subscription. GoDairyFree.org

Pinterest has become the place to go for hair and make-up tutorials, wedding ideas, crafting projects, and recipes of all kinds. From Mason jar salads to meal prep plans, recipes for any occasion and taste can be found on Pinterest, including recipes for genetically restricted diets. Weighinginonpku.com, pkunews.org, and Minnesota PKU Foundation all post tasty low protein recipes. Galactosemia Dietary Tool also posts galactosemia safe recipes. Pinterest.com

DIET FOOD COMPANIES Much like Jenny Craig or Nutrisystem, there are specialized diet food companies that prepare formulas and premade foods for people on restricted diets due to genetic conditions. Nutricia Metabolomics and Cambrooke Theraputics are two such companies. They provide several formulas specific to many different genetic disorders, as well as low-protein foods such as pastas, baking products, and snacks. All of these foods are available to order through their websites. There are also some free recipes, advice for different stages of life, blogs, and information about reimbursement for formula. Cambrooke Theraputics also offers an app called DietWell for PKU that is similar to How Much Phe. It is available for purchase on their website. In addition to the more metabolic focused companies, there are companies that produce alternative foods acceptable for some genetic condition diets. So Delicious, for example, is a company that provides dairy free alternatives to milk, ice cream, yogurt, creamers, and baking milk. They provide recipes and coupons through their website, but their products can be found in certain stores as well as through Amazon.

THEN AND NOW In many ways, navigating the world of genetically-restricted diets is like trying to navigate a minefield; one misjudgment and the consequences can be explosive. In the past, information about the proportions of different metabolic compounds such as protein, phenylalanine, or fatty acids was information only accessible by reading cookbooks or consulting with a doctor, making everyday meal planning frustrating and difficult. Everything had to be made from scratch and every ingredient had to be meticulously measured. Now, the online dieting community has created a wealth of services that have eased the process of meal planning and prep for those who have no choice but to stick to their diets. There is a map to guide dieters through the minefield. In a few short years, the online dieting community has developed so many useful websites and tools for people with genetic conditions. But why stop there? What will the next development be? • ABOUT THE AUTHOR: Adrianna Evans is a Program Intern working with Baby’s First Test at Genetic Alliance. She is currently a first year graduate student at George Washington University working on her Master’s in Public Health, specializing in Global Health Program Design, Monitoring and Evaluation. She received her BS in Biology at Penn State in the spring of 2015.

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DIET AND

NUTRITION

COMING TOGETHER THROUGH COOKING AND LEARNING BY GINA FRISINA M.S.E.D AND AMY COLVIN

In late November, staff, faculty and friends gather together to articulate ways they are thankful for each other and celebrate. The major event is also a part of the food and nutrition curriculum at New York Institute of Technology’s Vocational Independence Program. 22 February 2016 • EP MAGAZINE | eparent.com

holiday tradition at New York Institute of Technology (NYIT)’s Vocational Independence Program (VIP) is our annual Thanksgiving Dinner. NYIT has a program that teaches students independent living, job, social and academic skills. In late November, it is time for staff, faculty and friends to gather together to articulate ways they are thankful for each other and celebrate. It is also a major event and part of the food and nutrition curriculum at VIP. The campus is modeled along the lines of a Jeffersonian Academical Village. The basis of such a community is that living and learning are connected. The academic buildings are close to the residential hall. Some offices are located in the residential hall and residential advisors live there. Faculty members often come over the residential hall to teach independent living skills. In this way, students and staff connect on a deeper level. As a part of the Food and Nutrition curriculum, the second and third year classes plan, shop for, and prepare most of the Thanksgiving meal for close to 75 people. It usually takes a month of planning and preparation. The meal consists of turkey, ham, mash potatoes, sweet potatoes (with marshmallows of course), green bean casserole, corn soufflé and a green garden salad. The students who are learning the cooking curriculum and are currently in cooking classes are reinforcing the skills they learned by this experience. They familiarize themselves with the recipe, determine how much of each ingredient should be used, and how long each item will take to prepare and cook. These students also cook the dessert from simple fare such as brownies and cookies to more complicated items such as homemade apple and pumpkin pie.

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HOSTS WITH THE MOST: The second and third year classes plan, shop for, and prepare most of the Thanksgiving meal for close to 75 people, and are responsible for the set-up and clean-up of the dining room as well as the decorating.

PHOTO PROVIDED BY NYIT/VIP

The students involved are also responsible for the set-up and clean-up of the dining room, as well as the decorating. The first year students get to enjoy the meal without any participation as "their turn will come" next year. They also get to experience the excitement exhibited by the upper classmen at watching all of their planning and preparation finally take shape. The invited guests are staff members on campus whom the students are grateful for, such as their teachers, administrators, social skill coaches, vocational coaches, transportation team, facilities team, housekeeping and the chefs from the dining hall. Students attending the dinner are encouraged to "PYB" (present your best). This means they must come showered and shaved. Their hair should be washed and combed and their clothes must be clean, preferably business casual. As they have independent living coaches, they have been prepped on the daily care tasks they need to do each day to present their best (brush teeth, wash face, use deodorant, take morning medications). This self-care will be learned and cleanliness habits will be ingrained and prove useful, post-graduation. The students are taught cooking skills in instructional kitchens. These kitchens have two purposes: (1) To improve the activities of daily living skills (ADLs) training of our students on the spectrum; and (2) To provide students a hands-on experience in the kitchen preparing meals that they have planned and for which they have shopped. Food and nutrition instructors use the augmented kitchens to teach students how to plan, budget, shop and prepare meals for themselves. The equipment in the kitchen helps with the preparation of nutritious meals and serves to concretize the lessons needed in a life-like setting. This makes the absorption and generalization of skills more likely. Repetition is an important teaching tool. Without the adaption of these daily activity skills, students on

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the spectrum will not be able to transition to the world of work and independent living. The outcomes of independent living and employment are measured by alumni surveys as required by the U.S. Department of Education. In general, emphasis is placed on the safe handling and storage of food and the importance of kitchen sanitation. Basic kitchen skills are covered over the years regarding use and care of equipment and utensils, understanding cooking terms, measurement, basic food preparation skills, as well as serving and clean up. Students are guided in making healthy food choices when planning their menus and have the opportunity to select healthy food at the supermarket. The theme of the first year curriculum is for students to learn the tenets of basic nutrition and how to make healthy food choices. Students use the federal government “Choose My Plate” website to access information on healthy food choices. My plate illustrates the five food groups that are necessary for daily nutrition. The plate is divided into four sections. One-third is grains, one-fourth is vegetables, one-tenth is fruits and one-twentieth is proteins. A small circle is included to represent milk or yogurt. Students are encouraged to make up to half their plate fruit and vegetables, drink low fat milk and consume whole grains. They use a food diary and personal planner to analyze the food they eat, determine areas that need correction and create healthy daily meals. second theme is learning the importance of portion control. Students learn what acceptable portions are and avoid “portion distortion” when eating out. A third theme is having the students demonstrate to the instructor that they can locate healthy options on the fast food menu. Students in the first year are encouraged to use the SuperTracker, which is an interactive tool to track personalized diet and physical activity planning, calculations and analysis. In the second year, instruction includes hands-on experience in academic kitchens

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24 February 2016 • EP MAGAZINE | eparent.com

preparing meals. Students plan, budget and shop for materials they need. Emphasis is placed on safety. The basic cooking skills covered are: comprehending cooking terms, measurement, basic food preparation and storage, as well as thorough clean up. Topics include recipes, kitchen safety, food storage, microwave cooking, use of kitchen appliances and nutrition. The students meet each week for a lesson and will cook every week. Repetition is, again, very important. Simple recipes are used and the students will realistically be able to replicate the meals on their own. Second year students are brought once a semester to the supermarket to familiarize themselves with the layout. In the third year, the juniors participate in a food and nutrition practicum that runs on a three- week cycle. Students create menus for three weeks, including breakfast, lunch and dinner. Students shop for the necessary ingredients for the recipes they have chosen. They will also have to properly store their selections and plan necessary defrosting of food items prior to preparing their meal. Students then prepare their meals as independently as possible, with minimal supervision to foster confidence. Students also prepare a potluck meal from ingredients that can be found in the refrigerator and the pantry. Students with disabilities benefit from adaptive kitchen aids as some are challenged by fine motor issues. Difficulty opening jars and bottles is common. Using a slip resistant mat which allows two hands to open the jar is helpful. Tin can openers can be used with features such as improved grip or automatic powered operation. As for opening packets, it is sometimes helpful to secure a packet by wedging it in a drawer and then opening it with a package opener. Scissors should suit the hand size. Lefthanded scissors are available and especially useful if a student has tremors in his right hand. Each VIP student uses the resources in the kitchens that include a working station with access to computers where they can find prices of items and comparison shop to

create lists that meet their needs. Visual learners benefit from picture directions on the package. A student who may not understand one-half or three-quarters can match the “symbols” 1/2 or 3/4 cup on the package to the symbols found on the measuring cup. Pictures of kitchen appliances with words underneath can help the student match the word they read in a recipe with the picture of the appliance. tudents can also participate in cooking clubs and prepare items for special events held in the residence halls. During “ladies’ night” or “guys’ night,” students cook in an informal setting. As students are learning to socialize, all phones are put away so no social media is accessed. Students learn how to combine the ingredients and in what order. They need to be patient and have to take turns, which can be very difficult for some students. Impulses cause them to act and not wait. A social coach encourages the student to “step inside another's shoes” to determine who wants a turn. A student may already have set “impulse control” as a social goal with their daytime social coach which can be reinforced during the club activity. The mantra for them is to “stop and think” before they act. The student needs to focus to see what the next step is so they can add the proper ingredient if they are assisting the chef. This is a challenge for students with Attention Deficit Disorder (ADD) who get distracted by all the stimuli in the room. People are talking, music is playing, and the kitchen equipment can be loud. Students are primed to think about “what comes next” and how this will add to the taste or consistency to help stay focused on the task. Safety issues are reinforced throughout the event, for example wash hands, check for fresh ingredients, be wary of hot stoves, use proper mitts to prevent burns. Students greatly enjoy the final result and eat and chat together. And you know what? Getting to taste the final product is a great motivator! •

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References http://www.choosemyplate.gov/ http://www.livingmadeeasy.org.uk/

ABOUT THE AUTHORS: Amy Colvin is a Social Counselor of the New York Institute of Technology (NYIT)’s Vocational Independence Program (VIP) program and Gina Frisina, Director of Independent Living, VIP.

Because my coach pushed me...

can win I can championships.

DIET AND

NUTRITION

With these suggestions, your child can develop healthy practices that become automatic, natural customs to feel a sense of independence, control, and accountability.

COMMUNICATION The Social ‘Nutrition’ Behind Healthy Kids with Special Needs BY KAREN KABAKI-SISTO, M.S. CCC-SLP

t’s a new year, and a lot of us vow to eat healthier and exercise more as we realize its importance to our well-being. However, some children with special needs may view good health and fitness as tedious, punishing tasks that are forced upon them. With the right types of communication and social interaction, you as the parent can create a new way of life with your child that has long-lasting benefits.

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F O O D Give your child the power to choose, shop for, and prepare some meals. These activities may give him or her a better understanding which could grow into a preference to eat healthy foods more often.

MY PLATE IS GREAT! With your child, search through magazines for pictures of different food categories like vegetables, meats, and fruits. Explain the language behind more complex words like ‘dairy’ and ‘grain’ by giving common examples of them (cheese/yogurt; rice/bread, etc.). Have your child think of and find pictures of other examples. Label these food categories on different paper plates and bowls, and then glue the pictures. 26 February 2016 • EP MAGAZINE | eparent.com

WELCOME TO JOHNNY’S RESTAURANT! Now that your child understands the names and categories of foods, with your guidance, he can create new recipes, unique food combinations and different ways to prepare foods using these ideas: • Perhaps your child enjoys French fries but is afraid to try a baked or mashed potato, even though they are all the same food in different forms. To help your child realize how a simple potato can transform into many delicious foods, cook several potato variations with his help and broaden his tastes along the way. • The next time you’re preparing a meal, have your child join you to observe and get inspired to create her own recipes. Show her all the different ways items can be cut, and use language such as “diced / chopped / julienned / crinkle cut.” Further demonstrate how foods can be cooked, such as, “grilled / boiled / baked / raw.” These concepts can inspire her to spend more time with you in the kitchen and create her own recipes. Encourage her to choose a “color of the day” and pick out a healthy food to be prepared the way she prefers (e.g., “purple - eggplant - sliced and baked”; “tan - chicken - grilled”).

“AISLE” DO IT MYSELF! With your child, make a grocery list of all the food items neces-

ASPIRE TO INSPIRE: The next time you’re preparing a meal, have your child join you to observe and get inspired to create her own recipes. This can inspire her to spend more time with you in the kitchen and create her own recipes.

sary for a meal. When you both go to the supermarket, he can further use his language skills to figure out the aisle that contains what he needs (e.g., ‘milk’ within the ‘dairy’ aisle; ‘chicken’ within the ‘meat’ aisle).

YUCK OR YUM While preparing the food and at the dinner table, you can model positive statements to encourage your child to try different food items: • “Mmmm…take a whiff. This smells so delicious.” • “This soup is filled with healthy, yummy vegetables.” • “This julienned squash looks just like French fries, but I like the way these ‘squash fries’ taste better than French fries.” • “I didn’t think I would like the taste of this turnip, but it’s really terrific.” Of course, it is important to allow your child to share his opinion even if it’s not positive.

fill-line on the outside of paper or plastic cups. At mealtime on a divided paper dish, have your child write the food category to be filled within each meal (e.g., meat; grain) so that she can visualize the portions. For foods that can be eaten in large quantities, like healthy fruits and vegetables, give her a huge labeled plastic bowl to demonstrate the sense of endlessness. If your child has more advanced language skills, you can use a variety of different-sized plates, bowls, and cups to compare that she can eat “at least this much or more”, or, “at most this much or less.”

PHYSICAL

ACTIVITY

Engage your child in the following activities that are fun instead of fatiguing. Be sure that your child is given medical clearance for physical activity.

TOO MUCH, TOO LITTLE, JUST RIGHT!

“WORKOUT” OF THE BOX

Help your child develop accurate measures for portion control in order to eat treats like cookies, cake, chips, and candies more responsibly. With these foods, fill a side plate, saucer, or shot glass to demonstrate how much quantity that words like “few / some / a little bit” actually mean. To enjoy beverages in moderation, mark a

Though your child may be accustomed to traditional exercise routines like jumping jacks or pushups, he might find it more fun to use his imagination to make up his own movements with catchy, descriptive names. The ‘snowball’ can be made when he is seated on the floor, pulling his knees in with his hands. The ‘monster eparent.com | EP MAGAZINE • February 2016 27

Toys (with physical assistance if necessary): Play with pogo sticks and Sit-and-Spin using language like “jump higher/lower” and “spin faster/slower.” Or, use traditional toys in different ways, like placing a hula hoop on the ground to “jump into/out of.” Games: Enjoy Duck-Duck-Goose and musical chairs using language like “tag/pat/tap” and “chase/catch/grab.” Or, create games like Simon says with action words like “jump/shake/kick” (e.g., “Simon says, ‘Kick your leg and then shake your arm.’”). Dance moves: “YMCA” and “The Chicken Dance” are a few good ones the whole family can get involved with. While having loads of fun, you can provide visual models of the repetitive movements for your child to follow along with ease. You can explain the concepts behind the moves like, “With my arms are up and out, I look like the letter Y!”

SMALL STEPS Just like for adults, try a few simple changes to get your child moving more: • Climb the stairs versus taking the elevator or escalator. Model encouraging language like “It’s so healthy to climb the stairs.” Add supportive, reassuring language like, “If we get tired of climbing the stairs, we can take a little break or use the handrail to help us.” • Park farther away from stores while you and your child fill the time by casually chatting about what you need to purchase. • To break up constant sitting on the couch, put the TV remote and the household phone in different places using location words for child to retrieve like “under the sofa / behind the lamp.” • Have your child do some household chores while using encouraging language like, “Wow! Thanks so much for helping me carry these big boxes!” and, “Oh! We have to scrub this annoying stain even more!”

EVERYTHING IN BETWEEN: Engage your child in activities that are fun instead of fatiguing. She can use her imagination to make up her own movements with catchy, descriptive names. walk’ comes alive when your child tries to touch his toes to his outreached hands. When using the ‘jump rope’, your child turns his wrists as though he is holding the jump rope while jumping. Your child can incorporate such routines in between turns of playing a board/video game, or after sets of homework that involves drills, such as multiplication or spelling. Using more advanced math and language skills, your child can track how many exercises have been done by counting upwards, downwards, or by 5’s or 10’s. When your child wants to tell you about the new exercises she has designed, she can expand her language skills by creating a name for them, explain the movements, and describe the sequence.

OVER, UNDER, & EVERYTHING IN BETWEEN Books: Read stories together that match your child’s language abilities and emphasize movement, like Rosie’s Walk or The Berenstain Bears Inside Outside Upside Down. Have your child do the same actions, and maybe even change the characters to be different animals (e.g., “Hop like a bunny through the hallway.”; “Gallop like a horse across the yard.”; “Crawl like a crab under the table.”). 28 February 2016 • EP MAGAZINE | eparent.com

GET PUBLISHED Depending upon your child’s language abilities, help him write his own “Fitness Magazine” with drawings, stories, and instructions of all of the new skills he is learning. He can proudly show it to everyone, including his classroom teacher, occupational therapist, physical therapist, and physical education teacher.

HEALTHY

BENEFITS

AWA I T

With these suggestions, your child can develop healthy practices that become automatic, natural customs to feel a sense of independence, control, and accountability. All the while, you and your child will spend more quality time connecting and growing closer to each other. • ABOUT THE AUTHOR: Karen Kabaki-Sisto, M.S. CCC-SLP, is a certified SpeechLanguage Pathologist and Applied Behavior Analysis instructor. For over 20 years, Karen has been helping people with autism improve their communication abilities within schools and at-home settings. After a decade of technological experimentation, she invented “I Can Have Conversations With You!™”, a life-changing therapy program for iPad to help people with autism enhance their social and language skills like never before. To learn more, please visit www.iCanForAutism.com

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BY DEANNA PICON

With all the pressures and obligations of raising a child with a disability, parents put themselves on the back burner more often than t’s the end of a long day and you’re sitting at the kitchen table not, leaving them stressed out, anxious and frequently depressed. writing your “To Do” list: 1) attend IEP meeting next week That’s a recipe for a downward spiral of stress, guilt and 2) call school speech therapist to discuss iPad comO I S N S anxiety that can leave you less able to deal with life’s munication apps 3) buy milk, eggs, stir fry vegetables A RE challenges, and more likely to feel hopeless about getand chicken at the supermarket 4) pick up clothes ting back in control. So it’s essential for parents to from the dry cleaners 5) pay cable and cell phone take care of themselves, both physically and emobills… and the list goes on and on, until you jot down tionally. Your family needs you at your best as much the one that means the most: Get A Life. And you as possible; you will not only be a more effective parsecretly smile and wishfully think about how wonS E ent, but be happier and healthier in yourself and in derful that would be. MANAG your relationships. Taking care of all facets of a special needs child daily With a new year just underway, it’s the perfect time to living – medical, personal, therapy, school – while managing work and family responsibilities is no easy task for even the most develop a new outlook and look at some realistic strategies to get your life back on track. dedicated and organized parent. 30 February 2016 • EP MAGAZINE | eparent.com

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Be hoNeSt aBout Your feeliNgS Whether you’ve just received your child’s diagnosis or have been dealing with this journey for years, you’ll experience a roller coaster of emotions as you raise your special needs child. For one, you didn’t plan to have a son or daughter with special needs. Nobody does. You may feel sad, depressed, lonely, resentful or angry during periods of your life. There may be times when you secretly wish your child didn’t have a disability and could be like every other ‘normal’ kid you know. The first thing to remember is that these thoughts are perfectly normal and it’s all right to have them every now and then. This doesn’t make you a horrible person or awful parent – it just means you’re human. Taking on the huge responsibilities of a special needs child is not easy. You have to handle a host of issues and situations that parents of typically developing children don’t have to. So, be prepared to forgive yourself for being a mere human being and not a superhero. You didn’t sign up for this life any more than your child did. You’re allowed to be upset about this. You’re allowed to have moments of anger, doubt and frustration. You are allowed to fail – as long as you keep trying, it’s okay. Again, you’re human. Loving your child and doing your best for him/her makes you a good mother or father, whether your child has special needs or not. Continuing to do your best in challenging circumstances makes you both a good parent and a good person. If you find that you’re constantly plagued by negative thoughts, you may find it helpful to express your feelings. The longer you keep things bottled up, the higher the pressures go… and the worse it is when things fall apart. It’s much better to deal with things as they’re happening. There are a variety of ways to do that, such as writing in a journal or talking to a good friend or a trained, professional autism coach.

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KNow You’re iMportaNt You have to make your needs and wellbeing a priority. This may be one of the toughest things you’ll ever have to do, because you feel like your child should be

“Number 1” in your life. But you have to do it, not for yourself, but, in fact, for your child. Putting time toward your welfare now is like making an “investment” in your child’s future. It’s essential to take care of yourself, especially with everything on your plate. Make time to eat properly, get at least six hours of sleep and exercise. You don’t have to join an expensive diet plan or pay for a gym membership to do this. There is an abundance of free resources and information on healthy eating on the Internet as well as numerous fitness apps that can help you. In fact, one of the most beneficial, easiest and cost-effective forms of exercise is simple walking. A 30-minute walk, three times a week, is not only excellent for your heart, but regular fresh air and exercise can also benefit your mental health. Go for a brisk walk around the neighborhood and bring along a friend for motivation and accountability. Not only is it a great way to catch up with each other, but you’ll both be doing

good things for your bodies. Hitting the gym is also an effective way to work off stress, clear your mind and stay fit. You may also want to explore meditation or other relaxation techniques that will help keep your emotional balance.

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reMeMBer who You are It’s very easy to allow an all-encompassing challenge like raising a child with special needs to define you. It can happen without you even realizing it. Suddenly, you’re no longer “lover of country music and great pastry chef”, or “sales agent and talented handyman”… now, you’re just the parent of “that kid with the disability.” It’s important to remember that the person underneath that label is still you. Like any parent, much of your life is going to be centered on your child or children from now on, but that doesn’t change your past. You still sold that software, sang along with Tim McGraw, built that deck and eparent.com | EP MAGAZINE • February 2016 31

made all those cookies. Those things are real and permanent. Today, you may have given up your job and have a lot less time to spend listening to the radio or organizing your tools in the garage, but you’re still the same person inside. If anything, you’re a stronger and better person for having stepped up to the challenges of life with a special needs child. Nobody can turn back time and no responsible parent can live as they did before children came along. But that doesn’t mean you should abandon the hobbies, events and activities you enjoy doing.

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allow YourSelf to have a good tiMe Don’t feel guilty for a having some fun, even if it’s once in a while. Ask a close friend or relative to watch your child for a few hours, so you can get a mani/pedi or go shoot some pool with your buddies. It will be beneficial to unload the weight of your responsibilities for a short time. Whether or not there is a disability in a family, parents who take care of themselves and give themselves an occasional break are better able to take care of their children. More than most parents, you need to exercise that self-care. And if you continue to feel guilty, look for ways to involve your child and other family members. By giving yourself permission for joy, you will bring home new and positive energy for your whole family.

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StaY coNNected with frieNdS aNd faMilY Friendships are like tea bags – you don’t know how strong they are until you’re in hot water! When the chips are down and times are tough, you find out who is really there for you. The support of others around you can help you make it through the hard days, aid you in making decisions and provide the physical and emotional breaks we all need now and then. So realize you’re not alone and don’t isolate yourself. Maintain positive relationships with those who understand your child’s condition and support your family. Spending time with those who love and care about you will make you feel better about yourself and your situation.

A NEW MINDSET So tomorrow evening, after another long day, spend a few minutes selecting some pictures of you or your family that make you happy and bring a smile to your face. Put one or two on your refrigerator. Place them as screensavers on your computer or cell phone. Most important of all, use them to remind yourself that, despite all the challenges, you have a lot to be grateful for. Above all, the understanding that while you can’t choose the cards that life deals you, you CAN choose how to play those cards. Let’s make 2016 the year when you take back your life and build a better future for yourself and your family!

32 February 2016 • EP MAGAZINE | eparent.com

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SeeK help wheN Needed Recognize there are going to be times when all the challenges and stress get on top of you, and you need an extra pair of hands to get you through. There’s no shame in asking for and accepting help. Contrary to popular belief, it’s not a sign of weakness. It’s actually a sign of strength and courage to share your needs with others. So, call your best friend and ask her/him to pick up some groceries for you at the supermarket when she/he’s shopping for her/his family. Or ask your neighbor to meet your child’s bus if you have to work later than usual.

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reward YourSelf You work hard on behalf of your family. So, do something nice for yourself, each week, no matter how small. It could be as simple as setting aside 30 minutes to read your favorite magazine, watch television or text, email or call a good friend. Appreciate the little things in your life, like inviting the guys over to watch the game or for a cookout.

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accept uNSpoKeN praiSe aNd appreciatioN Your spouse or partner may be too overwhelmed in the midst of all the challenges the two of you face to tell you how much they care. Your special needs child may be unable to properly communicate how grateful they are that you accept and love them. Nevertheless, know that your child and family appreciate you and the difference you make in their lives.

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MaiNtaiN a poSitive perSpective There’s no getting around it, your child’s disability has changed your life. But nobody gets the life they expected. Lightning strikes, plans don’t work out, things change. Everybody, with or without a child’s disability in their lives, ends up in a place they didn’t expect, doing things they never would. The trick is to do the best with the life you have. With the start of a new year, this is a good time to make some long-lasting resolutions. With the right outlook and a good support system, you’ll have a good life, and so will your whole family. Yes, you have a son or daughter with a disability. You may also have a teenager with blue hair or a good singing voice or one toe larger than the other. It is what it is – another unexpected turn on the unpredictable road of life. You can’t always control what happens in life, but you can change how you react. You can decide if a disability is going to rule your existence, or if you are going to take control, fight back and reclaim your life. It is quite often just a matter of perspective.• ABOUT THE AUTHOR: Deanna Picon is the founder of Your Autism Coach, LLC, which provides personalized guidance, comprehensive support programs and seminars for parents of exceptional children. She is a parent of a non-verbal, young man with autism. Deanna is the author of “The Autism Parents' Guide to Reclaiming Your Life.” She can be reached at www.YourAutismCoach.com or @yourautismcoach

She Made It!

Juana Ortiz’s wish is that by reading I Made It, parents will be able to get hope and courage to keep fighting for their kids. BY CHRISTINE REDMAN-WALDEYER

There once was a virgin wilderness. Trees and land without deeds or fences. – Pedro Mir's Countersong to Walt Whitman’s Song of Ourselves

J

uana Ortiz, grew up in the town of Bani in the Dominican Republic. At the age of 15 she would leave that world behind to live in the United States. Her parents sought educational and healthcare opportunities for their daughter who was born with cerebral palsy. It is this journey that is reflected in much of Juana’s writing, her journey to the United States, those opportunities that were afforded to her, and her growing love for non-fiction, poetry and memoir. After her work appeared in poetry publications in the Paterson 34 February 2016 • EP MAGAZINE | eparent.com

Literary Journal, Juana took on the project of telling her story in her recently published book, I Made It! When asked what path led her to this, Juana answered, “Capstone-Print Journalism. This was it… the last course I had to take to complete the requirements for my major and obtain my bachelor’s degree!” Despite her nervousness, her professor at William Paterson University, Dr. Tina Lesher, explained the requirements and showed student examples from former student capstone projects. “Some had written magazines, others created booklets, and so on. The capstone project was to be the representation of yourself in the professional world,” said Juana. As her classmates discussed what their projects would be about, Juana decided to write a book about her life. Juana’s apprehension about approaching her professor was soon laid to rest, when Dr. PHOTOS COURTESY OF JUANA ORTIZ

SHARING THE LOVE: Juana with parent s Luz and Marino Ortiz; “I realize I haven’t made it by myself. I feel thankful that my accomplishments were made possible with the support that I had received.” Lesher not only approved the project but motivated her to do it. purpose in life.” Juana studied the syllabus which divided the course into three Juana explained that one of the goals she hoped to accomplish major parts. was to educate readers about the issues people with disabilities face “Throughout I Made It!, I exposed the readers to different aspects daily. Having gone through tough situations since childhood, she of my life not just as a person with cerebral palsy; I talk about decided to share those experiences for three major reasons. female issues, family struggles, cultural First to show readers that writing about her changes, low self-esteem, education, persiststruggles helped her to cope with her wounds ence, goals among other topics. The content of from the past. “It has been therapeutic to open the book is very diverse. Any reader can feel up and let others know what happened, how I familiar with one of the topics,” said Juana. felt about it, and how these life events have Juana relates her process as a step-by-step helped me to grow as a person,” said Juana. scholarly and self-study. “First, I had to write a Secondly, she wanted readers to see how she short essay describing the topic of my project. made it. That setting goals for herself can help The second part consisted of conducting others see they can do to it too. research related to the topic and creating a literHer third reason was that she believes that ature review of the research sources. The final there still are a lot of misunderstandings about step in my capstone was to interview several people with disabilities and their education. “I people who know me and ask them questions want to advocate for the inclusion of students about their impressions and perceptions of me. Title: I Made It! with disabilities in mainstream classes all the Thanks to therapeutic writing I see myself as way through college,” said Juana. Author: Juana M. Ortiz much more than the person with cerebral palsy. Paperback: 196 pages Juana goes on to say, “From the time I was a litI do not let my disability define me. My soul and Publisher: AuthorHouse (2015) tle girl, one of the hardest things that I had to my intellectual abilities are stronger than my ISBN: 1504901649 deal with was the limitation imposed by society physical body. For many years I was caught up Available on Amazon on people with disabilities. Since childhood, I in what I was unable to do physically. was labeled as a person incapable of carrying out For many years, I dwelled on reasons why I have this body. I simple activities, such as attending school. knew the medical explanation for my CP was lack of oxygen in my Looking back at my life I can say that I have come far, but I realbrain at the time of birth. But I wondered why that happened to me. ize I haven’t made it by myself. I feel thankful that my accomplishNow I am able to say that God had created me with a purpose. ments were made possible with the support that I had received: My Thanks to the gift of writing that God has given me, I have found my parents, my family, my high school teacher Doctor Carlos Lugo, eparent.com | EP MAGAZINE • February 2016 35

Back in the DR the image that I had of the winter season was the Christmas tree that Mami made using white toilet paper. She used to decorate the tree with Christmas lights and cover the tree branches with little pieces of white paper in each of the small hollows.” Juana realized her life would not be the same. The shock of exchanging short skirts and sandals for a coat, no backyard, her love of having the view and time to take in nature, had been replaced by the sidewalks, car horns, and the busy pace of city life. Juana recounts that the teen years were tough, “but especially when the teenager is also learning the way of life in another country. At first, I felt confused and unsure about who I was and where I belonged. I was moving from childhood toward adulthood and from Dominican to DominicanAmerican. It was a time I rejected being an immigrant, a Dominican, or a DominicanCLEARING HURDLES: “I had to deal with a lot of challenges related to my disability, the American; I only wanted to be myself. language and my gender. There were many times when I thought that I would not be Despite all my doubts, I tried to be a typical able to graduate from college but I did.” 15-year-old girl. In early fall 1988, my parkind professors, dedicated counselors, and nourishment, her memories, her journey, ents rented a small apartment in Paterson. They, my two brothers, and I moved out of other caring people who appeared in my her work to better understand the world. Juana relates that she misses the warm the crowded house on 16th Street and into life with both friendship and assistance.” I asked Juana’s feelings on how media weather and lifestyle of Bani. She also our own space.” Juana started school for the first time at has treated her story. In a world where we informs us that, “Pedro Mir was a major are increasingly becoming more aware and poet from the Dominican Republic. Mir’s age 16. Juana recounts, “Months after I have created a platform for sensitivity, there poem, ‘Hay Un Pais En El Mundo’ (‘There is moved to New Jersey. I couldn’t start immediately I had to wait has been as many steps backwards, more One Country in the and go through a notoriously noted with Donald Trump’s World’) brings me back “Juana dedicated process. Based on the well-publicized criticism of New York Times to my childhood in Bani, herself to the pursuit suggestions from the where I can feel the sunreporter, Serge Kovaleski. Juana said, “So far I am comfortable… shine warming my back of not only her degree, Child Team from the school that my two but I would like to have more coverage and the soft breezes but writing as well. brothers were attendbecause, by sharing my story, other people caressing my face on hot However, Juana’s ing the best option might be able to benefit along the way. afternoons.” journey did not start was to attend Passaic She recollects her first Those around me are very impressed with out smoothly.” County Elks Cerebral my achievement especially with the publi- night in the United Palsy Treatment cation of I Made It! Also, for the first time States: “On a cold they are becoming aware of some of the January night in 1988, Mami, my brothers Center in Clifton, New Jersey. Five years turmoil that I experienced in the past that I and I moved to the United States. We went later, since I was exceeding all expectations never shared with anybody, even my moth- to live in Paterson, New Jersey where Papi I was transferred to a regular high school. The change offered new obstacles, one of er who I have a great relationship with.” and Mami’s parents were already living. Juana indicated that even her own mother Before we arrived from the airport, Mami’s which was that since she was 20 years old, mother, Abuela, cooked us a welcoming and the age limit for a student to receive was shocked. special education was 21. With the support Juana also hits on topics such as dating meal of rice and black beans. On my second night in Paterson, I experi- of Rosita Kardashian and Daisy Mendoza, and marriage in her book, which she says is enced a kind of miracle. Mami was standing then the director and the advocate from the often not talked about. Ironically, Juana’s hometown Bani, is by the window in the living room. Suddenly, Multilingual Center, Juana and her mother known to its residents as the home of poets. I heard her voice, “Juana ven para que veas requested permission from the Paterson Bani, capital of the Peravia province, is the algo”—“Juana, come see something.” I Board of Education for Juana to complete all Taino word meaning “abundant water”. approached the window and I saw white four years of high school at JFK. Months later, the request was approved and her age Symbolically, it is that water Juana goes to for dots falling to the ground. 36 February 2016 • EP MAGAZINE | eparent.com

was no longer an obstacle to getting her high school education. This would lead her with the support of her family to attend college. Juana first attended Passaic County Community College (PCCC) where I had the opportunity to get to know Juana as her instructor in journalism. With the support of poet and professor, Mark Hillringhouse and others such as Linda Telesco, the Communications team, and myself, Juana dedicated herself to the pursuit of not only her degree, but writing as well. However, Juana’s journey did not start out smoothly. She related that she was taking classes in basic math, writing, reading, and grammar. “All the courses were in the ESL category except for math. In addition, I attended a weekly lab for each of the classes. When a class ended, I walked straight to one of the labs and spent two to three hours there. I was expected to go for an hour, but I needed more time to complete the assignments. Not all the challenges of college were academic. Even though I had taken a word processing computer class in high school, once I was in college I realized how weak my computer skills were. As I was advancing to a higher academic level, the writing demands were becoming tougher. In fact, on a couple of occasions, certain professors believed that I should repeat a course, because they felt I was not ready for the next level. A few semesters later, the situation didn’t improve. I kept failing classes, especially the writing class. I grew concerned, because I was receiving financial aid to pay my tuition. The future that I had planned seemed to be vanishing. There were moments when I saw myself as a loser. I thought that I shouldn’t keep fighting for something that was not working. In the spring of 2000, after failing Advanced Writing ESL (third

level) for two consecutive semesters, I made a very difficult decision. I dropped out of college.” In January 2002, at age 29, she went back to PCCC. The decision was risky. “I knew from experience that the possibility of succeeding was low. But even though I felt insecure about being able to pass all the courses, I realized that education was the key to moving ahead. I took the same class that I was taking before I dropped out. This time I passed the class. I kept taking one or two courses per semester. I had to deal with a lot of challenges related to my disability, the language and my gender. There were many times when I thought that I would not be able to graduate from college but I did. I graduated and transferred to William Paterson University, a four-year institution.” Juana added that she would like to say to parents and those living with disabilities “to not give up even if they get discouraged by the lack of support and understanding by others.” Even though her parents had support, they fought very hard. Juana’s wish is that by reading I Made It! parents will be able to get hope and courage to keep fighting for their kids.• Juana’s book is now available for purchase on Amazon at: www.amazon.com/Made-It-Juana-M-Ortiz/dp/1504901649 ABOUT THE AUTHOR: Christine Redman-Waldeyer is a poet and Assistant Professor in the Department of English at Passaic County Community College in New Jersey. She has published three poetry collections, "Frame by Frame", "Gravel", and "Eve Asks" (all with Muse-Pie Press) and has appeared in Schuylkill Valley Journal, The Texas Review, Verse Wisconsin, and others. Christine earned her Doctorate of Letters from Drew University and is a doctoral candidate in Rowan University's Ed.D program in higher education.

NO MATTER WHO YOU ARE OR WHAT YOUR GOALS IN LIFE MA AY Y BE, DISA BILITY.GOV CAN HELP YOU. DISABILITY.GOV

ADIL A DIL

HELPFUL, HE L PF UL , TECH TE CH SAVVY, SAV V Y , HARD HA R D WORKER, W OR KE R , CARING, CA R IN G, SPIRITUAL, SPIR ITUA L ATHLETE, ATHL E TE AMBITIOUS, AMB ITIOUS ONE-OF-A-KIND ON E OF A KIN D

FIND information, CONNECT with others & SHARE ideas.

eparent.com | EP MAGAZINE • February 2016 37

bullying & Cyberbullying UPDATE FOR PARENTS OF STUDENTS IN SPECIAL EDUCATION BY JOHN SPOEDE, PH.D., LPC-S, LCDC, NCC, CSC AND DIANNE REED, ED.D.

ABSTRACT ullying is unwanted, aggressive behavior among school aged children. It involves a real or perceived power imbalance, and the behavior is repeated, or has the potential to be repeated, over time (Bauman, Cross, & Walker, 2014). Bullying takes many forms, from direct physical harm (physical bullying); to verbal taunts and threats (verbal bullying); to exclusion, humiliation, and rumor-spreading (relational or social bullying); to electronic harassment using texts, e-mails, or online mediums (cyberbullying). Although physical and cyberbullying are often of greatest concern, social and verbal bullying are the more common forms experienced by students (Bauman, Cross, & Walker, 2014). In an article by Spoede and Reed (2015), several recommendations related to the issues of bullying including cyberbullying of students in special education were presented for school personnel. All of the materials referenced were based on current research studies from 2014 and 2015. Similarly, this article will enumerate recommendations for parents, school personnel, and community members related to the issues of bullying including cyberbullying of students in special education.

B

Additionally, there should be deliberate discussions aimed at promoting technology awareness, privacy protection and anonymous reporting of observed cyberbullying in order to increase digital upstanders (Wong-Lo & Bullock, 2014). Parents and community members can actively create and support cyberbullying awareness programs for parents, and actively offer parent and student trainings and information about technology awareness, privacy protection, and anonymous reporting of observed cyberbullying. Schools should work with parents and community members to assist with teaching students with disabilities about online safety (Good & Fang, 2015). O’Brennan, Waasdrop, and Bradshaw (2014) support collaboration between parents, community members, and school personnel regarding deterring bullying behaviors through encouraging the increase of connectedness between parents and school personnel. The researchers believe that this increased connectedness will lead to a deeper level of comfort for school personnel to quickly intervene when inappropriate behaviors occur. Parents can show their support by participating and facilitating school personnel appreciations and socializations.

Children with disabilities do not always realize they are being bullied

DETERRING BULLYING BEHAVIORS: IT TAKES A VILLAGE Recent research indicate that bullying behaviors may be deterred through joint efforts of parents, school personnel, and community members working together. Hughes (2014) suggests that a variety of school staff, community members, and parents should be involved in developing and assessing the effectiveness of bullying awareness, prevention and intervention programs, and data should be collected and reported to enhance future programs (Rodkin, Espelage, & Hanish, 2015). Bullying prevention and intervention programs that include support systems for bullied children may be established system-wide. (Rodkin, Espelage, & Hanish, 2015). It is important to note that school bullying awareness, prevention, and intervention programs should include cyberbullying as a component for all programs (Heiman & Olenik-Shemesh, 2015). 38 February 2016 • EP MAGAZINE | eparent.com

PARENT INVOLVEMENT IN OPEN COMMUNICATION IN ADDRESSING BULLYING ISSUES IN THE SCHOOL Parents should take on the primary position of asking their child to provide details of the bullying situations so that the information can be shared with school personnel. Children with disabilities do not always realize they are being bullied. They may, for example, believe that they have a new friend although this “friend” is making fun of them (Cortes & Kochenderfer-Ladd, 2014). Parents should be supportive of the child and encourage him or her to describe who was involved and how and where the bullying happened. Parents should ask the child specific questions about his or her friendships. Parents should explore whether the child may also be bullying other younger, weaker students at school. If so, his or her individualized education plan (IEP), functional behavioral assessment

(FBA), or behavior intervention plan (BIP) may need to be modified to include interventions to assist with the change of aggressive behaviors (Rodkin, Espelage, & Hanish, 2015). Parents should be aware of signs of bullying, even if the child doesn’t call it that; they should be sure to tell the child that it is not his or her fault and that nobody deserves to be bullied or harassed; and they should not encourage the child to fight back, this may make the problem worse (Good & Fang, 2015).

THE PARENT IN THE ROLE OF ADVOCATE FOR THEIR SPECIAL NEEDS CHILD Parents should talk with the child’s teacher immediately when they suspect that their child is experiencing bullying incidents to see whether he or she can help to resolve the problem (Cortes & Kochenderfer-Ladd, 2014). In general, it is also a good idea to include other school personnel, such as special education case managers, school administrators [,] and school counselors, in these conversations as well. Parents should put their concerns in writing and contact the principal if the bullying or harassment is severe or the teacher is unable to address the problem with positive outcomes. They should explain what happened in detail and ask for a prompt response. It is important that written records of all conversations and communications with the school be kept (Cortes & Kochenderfer-Ladd, 2014). In addition, parents should ask the school district to convene a meeting of the Individualized Education Program (IEP) or the Section 504 teams. These groups ensure that the school district is meeting the needs of its students with disabilities. This meeting will allow parents to explain what has been happening and will let the team review the child’s IEP or 504 plans and make sure that the school is taking steps to stop the harassment. Parents should discuss with the team the child’s need for counseling or other supportive services because of the harassment (Cornell & Limber, 2015). Parents may also be instrumental in promoting social and emotional skills development among students with disabilities (Rose & Tynes, 2015). During the annual planning meeting for students in special education, parents should be specific in requesting IEP’s about topics such as social skills development. Furthermore, parents and community members should be deliberate in allowing students in special education to develop social and emotional skills in natural settings, both in and out of the school setting. Parents can request topics on online safety be included in their child’s special education annual meeting paper work, and request that school personnel, such as school counselors, provide student assemblies and classroom guidance lessons about online safety. This involvement can be accomplished through such efforts as PTA involvement, parents serving on campus advisory teams, and parent participation in bullying awareness and prevention programs at school. Parents should be persistent. They should talk regularly with the child and with school staff to see whether the behavior has stopped (Eisenberg, et al, 2015).

CONCLUSION Every child receiving special education is entitled to a free, appropriate public education (FAPE), and bullying can become an obstacle to that education (Cornell & Limber, 2015). Students with disabilities, who are eligible for special education under the Individuals with Disabilities Education Improvement Act (IDEIA), will have an Individualized Education Program (IEP). The IEP can be a helpful tool in a bullying prevention plan. If a school district does not take reasonable, appropriate steps to end the bullying or harassment of a child with special needs, the district may be violating federal, state, and local laws. For more information, contact: The U.S. Department of Education Office for Civil Rights; The U.S. Department of Education Office of Special Education Programs; or The U.S. Department of Justice Civil Rights (Cornell & Limber, 2015). This is an area of research that will continue to yield new findings and recommendations. These future findings should be translated into research and evidenced based best practices for school districts, campuses, and personnel. As parents and community members, take responsibility to understand the most current research and education laws and be advocates, they can help translate these items into practice for children in and out of the school setting.• ABOUT THE AUTHORS: John Spoede, Ph.D., LPC-S, LCDC, NCC, CSC is Assistant Professor of Education College of Education and Behavioral Sciences, School of Education, Houston Baptist University, Houston, TX. Email: [email protected] Dianne Reed, Ed.D. is Professor of Education, College of Education and Behavioral Sciences, School of Education, Houston Baptist University, Houston, TX. Email: [email protected]

References Cornell, D., & Limber, S. P. (2015). Law and policy on the concept of bullying at school. American Psychologist, 70, 333–343. http://dx.doi .org/10.1037/a0038558 Eisenberg, M. E., Gower, A., McMorris, B., & Bucchianeri, M. (2015). Vulnerable bullies: Perpetration of peer harassment in youth across sexual orientation, weight and disability status. Journal of Adolescent Health, 56(2), doi:10.1016/j.jadohealth.2014.10.020. Good, B., & Fang, L. (2015). Promoting smart and safe internet use among children with neurodevelopmental disorders and their parents. Clinical Social Work Journal, 43(2), 179. Heiman, T., & Olenik-Shemesh, D. (2015). Cyberbullying experience and gender differences among adolescents in different educational settings. Journal of Learning Disabilities, 48(2), 146-155. Heiman, T., Olenik-¬Shemesh, D., & Eden, S. (2015). Cyberbullying involvement among students with ADHD: Relation to loneliness, self-efficacy and social support. European Journal of Special Needs Education, 30(1), 15-29. Hughes, S. (2014). Bullying: What speech-language pathologists should know? Language, Speech, and Hearing Services in Schools, 45, 3-13. O’Brennan, L.M., Waasdorp, T.E., & Bradshaw, C.P. (2014). Strengthening bullying prevention through school staff connectedness. Journal of Educational Psychology, 106(3), 870-880. Rodkin, P. C., Espelage, D. L., & Hanish, L. D. (2015). A relational framework for understanding bullying: Developmental antecedents and outcomes. American Psychologist, 70, 311–321. http://dx.doi.org/ 10.1037/a0038658 Rose, C. A. & Tynes, B. M. (2015). Longitudinal associations between cybervictimization and mental health among U.S. adolescents. Journal of Adolescent Health, xxxx, 1-8. doi:10.1016/j.jadohealth.2015.05.002 Spoede, J & Reed, D. (2015). Issue Update: Special Education and Bullying. DiaLog- Journal of the Texas Educational Diagnosticians’ Association, 44(2), 17-20. Wong-Lo, M., & Bullock, L. M. (2014). Digital metamorphosis: Examination of the bystander culture in cyberbullying. Aggression and Violent Behavior, 19, 418-422. doi:10.1016/j.avb.2014.06.007

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P A R T

F I V E

A GPS for Families of People with Special Needs BY LAUREN AGORATUS

INTRODUCTION I wrote this manual to help other families of individuals with special needs and the professionals who work with them. My daughter now has five life-threatening conditions, and autism just to keep things interesting. We have been through everything from early intervention to currently going through transition to adult care. I hope this helps you on your journey. Part III follows; to review Parts I – IV, see the September through December issues of EP magazine.

MEDICAL SYSTEMS Medical Appointments: Families need to be organized to make the most out of doctor’s appointments. There are many resources available to address issues such as preparing questions for doctors, coordinating specialists to avoid multiple visits, and efficient use time with providers in the managed care system. One of the most important things for families to know is what their child should be doing at a certain age. Bright Futures has “encounter forms” by age for families at www.brightfutures.org/encounter/family/ Another good resource is Handling Medical Appointments from Family Voices/Family-toFamily New Hampshire at http://nhfv.org/publication/tips-on-handling-medicalappointments/ Family Voices Wisconsin has “Making the Most of Doctor’s Appointments” with tips on what do to before, during, and after the appointment at http://fvofwi.org/wp-content/uploads/2012/01/Right-Doctor-factsheet-new1.pdf Families can find tips on preparing their child in the publication “Prepare Your Child for Doctor Visit” from Parents Reaching Out at http://parentsreachingout.org/cd/pdfs_en/hc003.pdf or Spanish http://parentsreachingout.org/cd/pdfs_es/hc003_es.pdf. Another issue facing families is special needs transportation. Families can find information on what is available and how to address transportation concerns from the NJ Council on Special Transportation at www.njcost.com or their local Center for Independent Living found at www.njsilc.org. By having everything ready ahead of time, families and their family member with special needs will get the best experience during their medical visit. Medical Decision-Making: Shared decision-making is one of the key concepts in healthcare. When patients partner with their 40 February 2016 • EP MAGAZINE | eparent.com

health providers, they get better outcomes. This is one of the key core outcomes of the Maternal & Child Health Bureau, which states, “Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive.” One of the main ideas behind the medical home concept (see section on Medical Home also) is that care needs to be patient and family centered. Children with special needs should have as much input as they can based on age and ability (see also section on Transition.) Parents need to decide if and when their children are capable of making medical decisions. The individual with disabilities should maximize their independence, including medical decisions. One of the most difficult decisions for parents of children with special needs is deciding how much they need to be involved in medical decisions as their child grows older. Besides guardianship (which could also be limited), there are other tools such as power of attorney that parents can use. Alternatives to guardianship resources can be found at: Alternatives to Guardianship http://ruralinstitute.umt.edu/images/archived_publications/Alternatives_To_Guardianship.pdf

Guardianship-Family Options (see Power of Attorney) http://nj.gov/humanservices/ddd/services/guardianship/

Guardianship & Alternatives to Guardianship www.ridlc.org/publications/RIDLC_Guardianship_Booklet.pdf

Guardianship and its Alternatives (see Chapter 3) http://mcdd.kennedykrieger.org/guardianship-and-its-alternatives-handbook-2011.pdf

Thinking About Guardianship? www.gcdd.org/images/Reports/guardianship%20guide%20-%20gcdd.pdf

There is information on Palliative and End of Life Care: What is an Advance Directive (see Healthcare Proxy) available at www.state.nj.us/health/advancedirective/whatis.shtml from the NJ Department of Health. Lastly, but perhaps most importantly, there is a guide for self-advocates “Self Advocacy Guide to Guardianship” (see Chapter 2) from the Idaho Disability Rights available at www.disabilityrightsidaho.org/images/content/docs/Self-Advocacy%20Guide%20to%20Guardianships.pdf.

THE DOCTOR IS IN: Families need to be organized to make the most out of doctor’s appointments. By having everything ready ahead of time, families and their family member with special needs will get the best experience during their medical visit. Medical Home: The medical home isn’t a physical place but the concept of having all of a person’s medical care information together and having a primary care provider coordinate all needed care, including primary care and specialty care. This is especially important for individuals with complex needs. The Primary Care Physician (PCP) has comprehensive information on the child’s conditions and helps care run smoothly across different settings and using specialists. The medical home care is family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent. Family-centered care acknowledges that families are the primary caregiver and support for individuals with special needs. Care is continuous when there is the same PCP over time and there is also help with transition to adult care. Comprehensive care covers both sick and well care such as immunizations. Care is coordinated when families are given community-based resources. Another of the six core outcomes for the MCHB is “Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home.” Compassionate care means that concern for well-being of both the individual and family is demonstrated by providers. Culturally competent care respects the diversity of families served (see also section on Cultural Competence.) There are resources to help families understand and use the medical home concept (see section on Medical Records for care plans).

General information on medical home: Every Child Deserves a Medical Home www.spannj.org/Family2Family/medicalhomeflyer.pdf

Medical Home www.pacer.org/health/medicalhome.asp

Medical Home – Not Just a Place www.gucchdgeorgetown.net/ucedd/documents/MedicalHome.pdf

or Spanish www.gucchdgeorgetown.net/ucedd/documents/3_spanish.pdf Medical Home Fact Sheet – Family-to-Family Georgia (Parent-to-Parent of Georgia) http://p2pga.org/images/stories/P2P_CMS_Medical_Home_Fact_Sheet_October_8_2012.pdf

Your Medical Home

or Spanish www.spannj.org/cyshcn/core_outcome_2/MedicalHomeFamilyBrochureEspanol.pdf

http://www.spannj.org/cyshcn/medical_home/MedicalHomeFamilyBrochure.pdf

Family-Centered Care: Family-Centered Care Self-Assessment Tool www.familyvoices.org/admin/work_family_centered/files/fcca_FamilyTool.pdf

Families Partnering with Providers: Building a Partnership with Your Child’s Doctor www.gucchdgeorgetown.net/ucedd/documents/BuildingPartnership.pdf

or Spanish www.gucchdgeorgetown.net/ucedd/documents/4_spanish.pdf Healthcare Checklist (picking providers, preparing for appointments)

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SHEDDING STIGMAS: In dealing with mental health, families must try to avoid the stigma associated with mental illness. Just as no one would blame someone with diabetes who needed insulin, the same should be true for those who need treatment for mental illness. www.spanadvocacy.org/sites/g/files/g524681/f/files/Healthcare_Checklist_0.pdf

Partnering with Your Child’s Provider www.familyvoices.org/admin/work_caring/files/partnering_providers.pdf

Partnering with Your Doctor www.ncdhhs.gov/dph/wch/doc/providers/Partnering_with_Your_Doctor-A_Medical_Home_Guide.pdf

Medical Records: Closely related to the medical home (see also Medical Home section) is the use of medical records to keep track of care. Besides records kept by medical professionals, families can also keep track of the most important information regarding their family member. Individuals with special needs could wear medical ID bracelets and families can carry a sheet in their wallet with essential information such as conditions, doctor contact information, medications/allergies etc. There is also a movement towards electronic medical records, including medical id bracelets that connect to computers. Either way, families can decide what works best for them. A good starting point would be to look at the Universal Child Health Record at www.state.nj.us/health/forms/ch-14.pdf as well as the Care Plan for Children with Special Health Care Needs at www.state.nj.us/health/forms/ch-15.pdf These forms simplify the child’s basic medical information. The American Academy of Pediatrics also has “Build Your Own Care Notebook” for families at www.medicalhomeinfo.org/for_families/care_notebook/care_notebook.aspx This detailed notebook has information on providers, insurance, appointments, hospitalization, immunizations, medical bills, etc. Other good resources are: 42 February 2016 • EP MAGAZINE | eparent.com

Care Notebook – Exceptional Children’s Assistance Center http://ecac-parentcenter.org/userfiles/F2F/Care%20Notebook%20FINAL%20ss%2012.1.09.pdf

or Spanish http://ecac-parentcenter.org/userfiles/F2F/Care_Notebook_Spanish_Final_3-1-11.pdf Care Notebook – Washington Department of Health www.pluk.org/Pubs/CareNotebook_790k.pdf

Care Plans for Teens http://cshcn.org/planning-record-keeping/care-plans-teens

Teen Care Notebook http://cshcn.org/planning-record-keeping/teen-care-notebook

My Health Pocket Guide (for self-advocates) www.waisman.wisc.edu/cedd/pdfs/products/health/PG.pdf

It’s also important for families to be aware of their rights – and their children’s rights – to privacy and confidentiality regarding their medical records under HIPAA.

MENTAL HEALTH Mental Health is just as important as physical health. In recognition of this fact, the Affordable Care Act strengthened access to mental health services. One of the ten Essential Health Benefits under the ACA is coverage for “mental health and substance use disorder services, including behavioral health treatment.” Increased access to behavioral health treatment may also make it easier to get coverage for autism. Although NJ has an “autism and other developmental disabilities” mandate, it only applied to 25% of plans which were subject to state regulations. Federal mental health parity

means that mental health treatment must be equal to that for physical health. However, NJ already had mental health parity that was even stronger than the federal law. In dealing with mental health, families must try to avoid the stigma associated with mental illness. The National Alliance on Mental Illness (NAMI) likens it to any other biologically-based illness except the organ affected just happens to be the brain, and the symptoms manifest as behavior. Just as no one would blame someone with diabetes who needed insulin, the same should be true for those who need treatment for mental illness. Although the recent displays of school violence have opened the dialogue on mental illness, research indicates that people with mental health issues are more like to be victims, rather than perpetrators, of violence. NAMI also has workshops and classes for families dealing with mental illness at www.naminj.org/programs/children-info-services/nami-basics/ or Spanish contact Martha Silva at (888) 803-3413 or [email protected]. Nationally NAMI has additional resources from their Child & Adolescent Action Center at www.nami.org/Template.cfm?Section=For_Parents,_ Caregivers,_and_Youth&Template=/ContentManagement/ContentDisplay.cfm&ContentID=37809

or Spanish www.nami.org/Template.cfm?Section=Child_and_Adolescent_Action_Center& They also have a family guide on how the primary care provider (e.g. pediatrician) can address mental health at www.nami.org/Content/ContentGroups/CAAC/FG-Integrating.pdf. In NJ, there are also Family Support Organizations in each county have information and support for parents at at http://njfamilyalliance.org or for Spanish just click on translate. There is also the Children’s System of Care and an overview of services, including emergency mobile response, which will go to where the child is located for crisis stabilization is available at www.nj.gov/dcf/about/divisions/dcsc/ Performcare, the Contracted System Administrator (gatekeeper) of the Children’s System of Care, has a “Youth & Family Guide” at www.performcarenj.org/pdf/provider/youth-family-guide-eng.pdf or Spanish template=/ContentManagement/ContentDisplay.cfm&ContentID=21090

www.performcarenj.org/pdf/provider/youth-family-guide-span.pdf.

Other good resources for families on what to look for and when to seek help: Young Children: Center on the Social and Emotional Foundations for Early Learning - Family Tools http://csefel.vanderbilt.edu/resources/family.html

First Steps: A guide for Parents of Young Children with Developmental Disabilities Chapters 1-4 (diagnosis based on age, parent feelings, definition of developmental disabilities, individual/family adjustment) www.fddc.org/sites/default/files/file/publications/first_steps/FSSTEPSEngColor01-05.pdf

or Spanish www.fddc.org/sites/default/files/file/publications/first_steps/FSSTEPSSpaColor01-05.pdf

All Ages: A Family Guide to Children’s Mental Health Services and Supports - Florida Department of Children and Families www.dcf.state.fl.us/programs/samh/mentalhealth/docs/FamilyGuideBookDCF.pdf

Bright Futures in Practice (what to expect by age) www.brightfutures.org/mentalhealth/pdf/tools.html

Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents – Maternal/Child Health Knowledge Path - U.S. Department of Health and Human

Services, Health Resources and Services Administration, Maternal/Child Health Bureau www.mchlibrary.org/KnowledgePaths/kp_Mental_Conditions.html

Family Guide to Systems of Care for Children with Mental Health Needs – English & Spanish http://store.samhsa.gov/product/Family-Guide-to-Systems-of-Care-for-Children-WithMental-Health-Needs-bilingual-English-Spanish-/SMA05-4054

Families of individuals with disabilities need to recognize when their family member, or even other family members, need some support to address mental health and wellness.

WELLNESS & PREVENTION Wellness and preventive care are especially important for people with special health care needs. So often, the focus is on the person’s condition that typical measures such as lead screening, immunizations, etc. could be forgotten. The Affordable Care Act has a prevention and wellness initiative which means that these services are provided to families at no cost. Nutrition: According to the Centers for Disease Control (CDC), 18% of children and 21% of teens are obese (not just overweight.) Obesity causes children to develop “adult” diseases like diabetes, high blood pressure, high cholesterol etc. The two most important factors in reducing obesity are nutrition and activity (see also section on Physical Activity.) The CDC has good information on nutrition for children at www.cdc.gov/bam/nutrition/index.html or similar information in Spanish at www.cdc.gov/spanish/especialesCDC/ObesidadNinos/ Wellness guidelines from Bright Futures have been endorsed by the American Academy of Pediatrics (AAP). The nutrition guide is broken down by age and explains ideas such as portion control. It also addresses related topics such as breastfeeding and food allergies. The guide is available at www.brightfutures.org/nutrition/index.html The AAP also has nutrition information for families available at www.healthychildren.org/english/healthy-living/nutrition/Pages/default.aspx or Spanish www.healthychildren.org/spanish/healthy-living/nutrition/paginas/default.aspx. This website has information on healthy snacks, food substitutions, picky eaters, gluten free diets, etc. The AAP NJ Chapter has “Obesity Prevention Resources for Parents” at www.aapnj.org/showcontent.aspx?MenuID=998 in English and Spanish. This website also has tips by age, particularly for young children. Children who are overweight or obese are more likely to grow up to be obese or overweight adults, so prevention is essential. Physical Activity: Closely related to nutrition (see Nutrition section) and obesity prevention is physical activity. Physical activity is essential for good health for all people with disabilities, regardless of ability. It is even more important for children with special needs to start early as they may be more likely to have weight problems, and there are ways to make activities accessible to them. There are resources on wellness and prevention from Bright Futures, endorsed by the American Academy of Pediatrics (AAP). Bright Futures has “Bright Futures in Practice: Physical Activity” available at www.brightfutures.org/physicalactivity/about.htm They have activities for children with and without special healthcare needs and address topics such as asthma and preventing heat stroke/exhaustion, etc. The AAP also has a fitness guide at www.healthychildren.org/english/healthy-living/fitness/Pages/default.aspx or Spanish Spanish www.healthychildren.org/spanish/healthy-living/fitness/paginas/default.aspx. This guide has ideas on making time for fitness, involving the whole family, developing a fitness plan, and overcoming obstacles eparent.com | EP MAGAZINE • February 2016 43

such as living in unsafe neighborhoods. The U.S. Department of Health and Human Services has a special guide on physical activities for girls at www.girlshealth.gov/fitness/index.html and www.girlshealth.gov/padres/forma_fisica/index.html

(Spanish) The Centers for Disease Control & Prevention has a program “Body & Mind: Physical Activity” at www.cdc.gov/bam/activity/index.html and www.cdc.gov/spanish/hojas/actividad_fisica.html

(Spanish) designed for children to use for motivation. There is also a free online course on nutrition and fitness, which is personalized to the individual called “14 Weeks to a Healthier You” from the National Center on Health, Physical Activity, and Disability at www.ncpad.org/14weeks/ The National Center on Health, Physical Activity, and Disability STAGES OF AGES: Families need to remember that some children may need help in developed a guide “Discover understanding what is happening to their bodies as they grow up. Accessible Fitness” for wheelchair users that can be found at resource is “Let’s Talk About Health” from The Arc of NJ’s Mainstreaming Medical Care Project. There is a workbook and www.nchpad.org/discoverfitness/index.html In addition to the resources above that include special needs, there are groups that work just with chil- video explaining exams available at http://mainstreamingmedicalcare.org/ dren with disabilities. There is a listing of accessible playgrounds at and click on “Women’s Health Project” order form. www.accessibleplayground.net/united-states/new-jersey/. Other organizations have peer buddies that mentor children and adults with special VACCINE PREVENTABLE DISEASE needs such as: Families need to make sure that their children do not get illnesses that could be prevented by vaccines. Some parents may think Little League Challenger Division www.littleleague.org/media/challenger.htm that because they themselves had some of these diseases as children, that it won’t hurt their children to experience the same disMiracle League eases. However, even chicken pox can have serious consequences, www.miracleleague.com/findaleaguestartone.html including hospitalization and death. The American Academy of Special Olympics NJ Pediatrics has a list of recommended immunizations at www.sonj.org www2.aap.org/immunization/izschedule.html. The AAP also has a family page, Sexuality: Families need to remember that individuals with including making educated decisions on vaccines and safety, at disabilities have the same sexuality feelings as everyone else. www2.aap.org/immunization/families/families.html. Some children may need help in understanding what is happening to A Special Note about Flu Prevention: Families of individuals their bodies as they grow up. The Vanderbilt Kennedy Center has with disabilities need to know that some people are at higher risk guides for both boys and girls. One is “Healthy Bodies: A Parent’s of flu complications. The Centers for Disease Control & Prevention Guide on Puberty for Boys with Disabilities” and the other is has “People at High Risk of Developing Flu–Related “Healthy Bodies: A Parent’s Guide on Puberty for Girls with Complications:” available at www.cdc.gov/flu/about/disease/high_risk.htm or Disabilities.” The University of Minnesota has a factsheet for families Spanish http://espanol.cdc.gov/enes/flu/about/disease/high_risk.htm. In addition, “Promotion of Healthy Relationships and Sexuality for Individuals with The Arc national has information on “Steps You Can Take to Prevent Disabilities” at http://lend.umn.edu/docs/LEND-FACT-sexuality.pdf. The University the Flu” www.thearc.org/document.doc?id=4470. of South Florida’s “Sexuality and Developmental Disabilities Across the Lifespan” is at http://flfcic.fmhi.usf.edu/docs/Parent_LowRes_English.pdf Editor’s Note. A GPS for Families of People with Special Needs, Part VI or Spanish http://flfcic.fmhi.usf.edu/docs/Parent_LowRes_Spanish.pdf Dr. Peter will appear in next month’s issue of EP magazine • Gerhardt, chair of the Organization for Autism Research (OAR) has good information on adult issues, including sexuality, at ABOUT THE AUTHOR: www.researchautism.org/

There are also resources with a special focus on women’s health, such as “Being a Healthy Woman” at www.health.nsw.gov.au/pubs/2010/being_healthy_woman.html. Another excellent 44 February 2016 • EP MAGAZINE | eparent.com

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

David and his wife, Kay Fishers, IN

I made a plan. It wasn’t easy, but I did it. So can you.

It’s not easy, but it’s worth it. People who learn to manage their diabetes from the start have fewer health problems from diabetes years later. You can too. Learn how to better manage your diabetes. Order a free booklet, 4 Steps to Control Your Diabetes. For Life. from the National Diabetes Education Program to learn more.

For more information, visit www.YourDiabetesInfo.org or call 1-888-693-NDEP (6337); TTY: 1-866-569-1162. The U.S. Department of Health and Human Services’ National Diabetes Education Program (NDEP) is jointly sponsored by the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) with the support of more than 200 partner organizations.

sTIGMA AND HeALTH CoNDITIoNs

PART III of A seRIes

BY CHERYLE B. GARTLEY WITH MARY RADTKE KLEIN

(Authors’ Note: While some of this article has been written in the first person as a matter of style, and due to the fact that one of the authors lives in the world of the stigmatized, it is really a joint enterprise. In this section of a series, we address the challenge of building public awareness regarding the impact of stigmatization and what researchers are learning that can be applied to lessen stigmatizing behaviors and build a more helpful society. Challenging our society to look at and understand how health stigmas impact everyone is a complex endeavor. Motivating people to change is even more so. However, social interactions are becoming better understood, thanks to what researchers are learning about human behavior. This knowledge offers hope that stigmatizing people with health conditions and disabilities can be lessened.)

HeALTH sTIGMAs: fACe THeM / RePLACe THeM Understanding Implicit Bias: Those of us who are vested in lessening the stigma surrounding health conditions can contribute to this change by increasing our understanding of how individuals form ideas and beliefs about others. This understanding is necessary before we can help others to change their ideas and behaviors, like putting on your oxygen mask first before a child’s during an airplane emergency. Stigma experts cite stereotyping as a precursor to stigma of all types. Below the level of human consciousness, stereotyping often begins as a pattern of unconscious thinking researchers call implicit bias. In an article by Jeremy Adam Smith (entitled “Why Teachers are More Likely to Punish Black Students”) Smith describes the phenomenon as a bias in judgment and/or behavior that results from subtle cognitive processes that often operate at a level below conscious awareness. Implicit bias contributes to attitudes based on characteristics such as age, appearances, and ethnicity. But if implicit bias happens below the

conscious level, that is without us knowing it is affecting us, is there any hope of changing it? According to research, the answer is yes. There are practices that can limit implicit bias. In fact, just by reading this information you are changing. Research shows that simply being aware of the existence of implicit bias is helpful. Then if you add new, revised, more empathetic and respectful conscious intentions and goals, you can begin to override your own subconscious associations. We are all growing rather automatically as we experience daily life, but we can also grow intentionally. In order to enhance this growth, everyone needs to put in effort. One intentional way to grow is to practice identifying and contending with all the things that influences stereotyping. For instance, take a hard look at how people are portrayed in magazines and on television. Bring into your own consciousness any subtle stereotyping you discover. Then add to this awareness conscious intentions and goals. In this manner you can begin to override your subconscious associations. Interesting research from scientists at Northwestern University has demonstrated that our biases need not be set in concrete. This research has shown that using counter stereotyping training techniques during sleep can help alter our implicit biases. Their findings, “Unlearning implicit social biases during sleep,” were published in the May 29, 2015 edition of Science (sciencemag.org), one of the most prestigious academic journals. “What our work is doing,” said Professor Ken Paller, senior author and professor of psychology, “is opening a discussion if a person wishes to decrease their bias, there are methods they can use that would have a lasting effect.” He stated that another important implication is the research could broaden the discussion of how bias can be combated in society. Their process begins with subjects participating in counter stereotyping training. After this training, scientists examined the potential to reinforce during sleep what the study participants

Share your experiences of health stigmas at [email protected]. There is much that needs to be told in order that everyone understands the impact of stigmatization.

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had learned. “All we’re doing is reinforcing learning during sleep,” states Paller. “Learning still has to happen.” “...benefits of this counter-bias training can be fragile, subject to reversal when the original stereotypes are again reinforced in typical circumstances, such as through the media,” continues Paller. Although this was a research process, remembering a basic premise coming from it – that we must stay aware of the subconscious inputs and balance their influence – is something we can all work to do in our daily lives.

oVeRCoMING THe BYsTANDeR effeCT Research on a very different topic, the “bystander effect,” also has something to offer in creating a more respectful and compassionate world view. “Bystander effect” research explores who takes action to help another, and what might stand in the way of that action. All of us have heard stories about a young child calling 911 and saving their parent’s life. These stories are highlighted because they portray an action one wouldn’t expect from a young child. But are they really unique? Do the majority of children and adults take action when they see there is a need, or do they stand

by and not offer help in most situations? The bystander effect exists when being part of a group paralyzes an individual from coming to the aid of someone in need. In her article “Helping Kids Overcome the Bystander Effect,” Kira M. Newman suggests ways to contribute to the creation of a kinder society. Researchers found that five year olds were less likely to help when other children were available, because they feel less responsibility. In one experiment, 95% of the children helped when they were the only ones available to do so, or if they observed that the other children were not physically in a position to help, yet only 55% helped when it was apparent the other kids could pitch in. Like adults, children assume that one of the other people will likely take action, a phenomenon known as “diffusion of responsibility.” The study’s lead author, developmental psychologist Maria Plotner, states that we can encourage kids to help others more by fostering a greater sense of personal responsibility within them. You can accomplish this by teaching children about the bystander effect and its consequences. Then explicitly communicate responsibility with phrases such as, “I am counting on you”; “I’ll be very proud of

you if you provide help”; or “Remember, helping is the right thing to do.” Modeling the behavior yourself by displaying kindness and help; and providing children with environmental cues – such as posting “It’s my job to help” slogans in schools and other public places – reinforces the idea of taking responsibility. Whenever we take action (rather than wait for someone else to do it) when observing someone being stigmatized, one by one, we are combating both the bystander effect and the diffusion of responsibility, with responsible behavior.

NIH TAKes UP THe sTIGMA CHALLeNGe Perhaps most telling about the important impact stigma has is that this subject has been focused upon by the US National Institutes of Health (NIH). In 2001, the Fogarty International Center of the NIH convened a conference entitled “Stigma and Global Health: Developing a Research Agenda.” The February 11, 2006 edition of The Lancet (often described as one of the most prestigious peer-reviewed general medical journals in the world) published an article summarizing this conference. Article authors Keusch, Wilentz, and Kleinman talked not only about the indieparent.com | EP MAGAZINE • February 2016 47

vidual costs of stigma, but also how society pays. They state: “Indeed, stigma dies hard and society pays for the extent to which it continues to condemn and ignore the plight of stigma victims. It pays in the loss of productive citizens and the denial of fundamental human rights to them, and others associated with them; in the costs of untreated or poorly treated disease that progresses to disability and death because the victim (of stigma) was afraid or delayed in coming forward; and in the cost of the epidemic spread of infectious disease – as is happening in the case of AIDS in China, India, and Russia.” The article also points out that increased awareness of the impact of stigma is leading to a re-look at health stigmas and the pressing need for more research. The authors referenced several papers presented at the “Stigma and Global Health” conference. Reading through even a few of these quickly leads one to the conclusion that health related stigmas bring pain and other consequences equal to, or even far greater than the disease processes or injuries (by birth, war, or accident) themselves. Stigma is a plague that affects everyone, either directly or indirectly. Family members and friends do not escape stigma’s impact. When out in public with someone who has a stigmatizing health condition that is visible, they too often cannot avoid stranger danger. For example, family members are often asked by a waiter what another member of their family would like to order simply because a wheelchair is in the mix. It may come as a surprise to readers that, both subtly and openly, some doctors stigmatize their colleagues. This is often exhibited by assumptions that physicians who specialize in certain areas of medicine do so because they couldn’t “cut it” in more prestigious specialties, or that they selected their specialty because they didn’t graduate near the top of their medical class. It is hard not to hope the law can offer some protection in all of this. Unfortunately, unlike many things that laws can protect us from, laws prevent little when addressing health related stigmas. Scott Burris’s paper, “Stigma and the Law” (presented at the NIH conference) points out that, “Law is most commonly seen as a tool for blunting the effects of stigma by protecting health information and prohibiting discrimination based on a health condition.” Laws can prohibit behavior, but not the attitudes and the beliefs that motivate the behavior. Also, for the law to be helpful in any circumstance, there must be a legal system in place that effectively enforces them. And it is not just in developing countries that this may be lacking. For instance around the topic of disability, “...research has shown that most disability discrimination complaints are never investigated by government enforcement agencies.” Using the law means having the financial ability to do so, and dollars can often be very scarce when living with illness and disability. What are the lessons learned from this conference? According to Keusch, et al: “Given the universal nature of stigma, its strong irrational and emotional roots, and the deeply felt responses it engenders in both discriminators and their targets, how is it possible to overcome the problem? ...No single approach, based on appeals to social justice, human rights, medical science, or to law and education, will suffice...Instead it is more likely that a combination of social, political, and economic will, imbued perhaps by 48 February 2016 • EP MAGAZINE | eparent.com

the actions of charismatic movers and shakers, is necessary for society to reach the tipping point –when the pendulum swings away from stigma to de-stigmatization.” In a future where ordinary citizens are expected to experience space travel, and phones will be charged through the air without having to plug them in, does it seem too much to expect an environment where people live stigma free?

JoINING THe CoNVeRsATIoN Mahatma Gandhi once said: “If we could change ourselves, the tendencies in the world would also change. As a man changes his own nature, so does the attitude of the world change towards him. We need not wait to see what others do.” We who are stigmatized, need not wait to see what others do. We can take a stand like so many others before us have done for other just causes. The question is how? In her book “Turning to One Another: Simple Conversations to Restore Hope to the Future,” Margaret J. Wheatly, PhD, an organizational behavioral consultant, states: “There is no more powerful way to initiate significant social change than to start a conversation.” The capacity to participate in creating social change is different for each of us...some can march, some write letters to the editor, some give speeches, but what Dr. Wheatly has articulated is something every single one of us can do – Join. The. Conversation. We’ll make it easy for you. Share your experiences of health stigmas at [email protected]. There is much that needs to be told in order that everyone understands the impact of stigmatization... so tell us about the humorous experiences you’ve had with your fellow man; or how you answer the penetrating questions from strangers; or what you’ve done to increase your resilience in order to lessen the impact of stigma on your life; or whose tires – wheelchair, bicycle, or car – you’ve let the air out of in frustrated retaliation over a case of human stupidity! Don’t forget to add a list of those you consider great role models and anything else you’d like to share – we want to hear what’s important to you... and with your help, we promise to start a conversation, in fact myriads of conversations, like no other! • ABOUT THE AUTHORS: Cheryle B. Gartley is Founder and President of The Simon Foundation for Continence; co-author and editor of the first book for the layperson on incontinence, “Managing Incontinence: A Guide to Living with Loss of Bladder Control,” published in English, Spanish, and Japanese. She has published widely, including articles in journals such as The Lancet, Urologic Nursing, Exceptional Parent, and Social Work Today. She is the co-founder of the International Continence Society’s Continence Promotion Committee; Simon Canada (now the Canadian Continence Foundation); and the American Restroom Association. She also sits on several governing and advisory boards. Mary Radtke Klein has been a long-term care consultant and trainer with nearly 30 years of experience in advocacy, consumer education, assisted living development and staff training. She worked closely with State regulators and providers to identify best practice procedures that work in the real world and to promote improved quality of life for residents in a variety of long term care settings. She is a popular presenter at workshops and conferences, and continues to write and serve on industry advisory groups and the boards of notfor-profit organizations.

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For parents to be confident that their children could survive in this world without them, we would need a direct support workforce, of adequate number, trained to provide the supports our children need to be safe, healthy, and happy.

THE DIRECT SUPPORT

WORKFORCE CRISIS: A Parent’s Perspective PA R T

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BY GAIL FRIZZELL

and human services fields and in the economy at large.” (National Direct Service Resources Center, 2009) • “The 2013 annual update of federal Health and Human y 30-year-old daughter, Lauren, loves her home in a town Services poverty guidelines indicates that $11 an hour or just a 20-minute drive from Mom’s. It meets all of her $22,000 a year is below the poverty threshold of $23,550 for wants and needs and has a lovely view from her bedroom a family of four. An income below $31,322 would make an window of woods, and an occasional bear. She’s lived there for five individual eligible for programs including: Head Start, the years now. Within the next nine months, Lauren may be forced to Food Stamp Program, the National School Lunch Program, leave her comfortable little home. Life as she knows it will end. the Low-Income Home Energy Assistance Program and the Lauren has severe, multiple disabilities, and she can no longer find Children’s Health Insurance Program.” A DSW could apply staff to provide the support that she depends on to live her life. (Part for and receive the same supports that the person they are one of this artcle appeared in the December 2015 issue of EP) supporting requires.” (Access Press Staff, 2013) • “Direct care work is expected but not respected......Direct CLIMATE OF EMPLOYMENT care workers also have few opportunities for advancement Low wages, minimal training, ambiguous awareness of the role, and the higher wages that often accompany it. As a and the lack of career path contribute to public percepresult of these low wages, direct care workers and tion that direct support is a low end, low value job. The T SUP C E their families are frequently forced to depend on understanding of the role outside of the developP IR public benefits like Medicaid and food stamps (in mental disability community is very limited and 2011, 49% of direct care workers lived in houseprimarily informed by media exposes and depressholds that relied on public benefits).” (Brill-Ortiz, ing stories. 2014) Adding to the lack of status of DSWs is their rela• “For a start, they (direct support workers) are tionships with employers. Turnover, low pay, and CE among the most poorly compensated of all U.S. the bottom of the workforce ranking contributes to C R I S I S workers. Their median hourly wage was $10.63 in poor or undeveloped relationships, a lack of confi2012, which was less than they earned 10 years earlier, dence, and undervaluing. (The Lewin Group, 2008) after adjusting for inflation... They also have one of the The public perception of what DSWs do remains in custodial nation’s highest rates of on-the-job injuries.” (Brill-Ortiz, parameters— protect and provide care for the intellectual equals 2014) of children. Any profession that involves mostly women (DSWs • Supporting these findings is a study funded by the Center for are 89% women), requires skills that are equated by society with Medicare and Medicaid Services which concurred that: mothering (physical care, guidance, protection), and is related to o “In general, wages and benefits are the two factors that those considered less fortunate, less able, less equal, is undervalhave been consistently identified in studies as factors associued by our culture. We are asking far more of DSWs than ever ated with higher rates of turnover for DSWs...” before, but we are neither training them to provide it nor setting o “Careers in direct support work often do not provide livable compensation rates which align with the outcomes expected. Is it wages. Low wages translate into low family or household any wonder that this system is experiencing unprecedented incomes. In 2006, just about a quarter of DSWs employed in vacancies and that turnover is crippling the quality of care and home health care services lived in families with incomes costing the system millions of dollars each year? under the federal poverty level.” • DSWs are “among the lowest paid workers in the health care 50 February 2016 • EP MAGAZINE | eparent.com

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o “A high proportion of DSW households rely on some form of public assistance in order to make ends meet. This assistance can be found in the form of food assistance, cash assistance, housing assistance, transportation and energy assistance, public health care and/or Medicaid.” o And, recommends: “Implement strategies to increase DSW wages across sectors and settings, ensuring that this workforce earns family sustaining wages in every c o m m u n i t y throughout the U.S. Wage scales should be developed that are commensurate with competence, experience and levels of responsibility” (The Lewin Group, 2008)

THE COST OF CRISIS It is estimated that the annual national cost of turnover in DSWs is $784 million. (NJ Council on Developmental Disabilities, 2014) This cost to the system is a poor use of funds, neither adding quality nor capacity to a struggling system. In an additional toll on taxpayer dollars, due to the low wages contributing to that turnover, almost

half of DSW households rely on means tested public assistance. (PHI National 2011) This system in crisis also takes a toll on the financial well-being of family caregivers. Sixty-nine percent of family caregivers report that they have had to decrease their work hours or take unpaid leave. Seventy percent report that they have experienced work-related issues due to their caregiving responsibilities. On a whole, they experience loss of wages, health insurance and benefits, retirement savings, and social security benefits. (Family Caregiver Alliance, 2011) And, after decades experiencing the physical and mental toll of caregiving, eighty percent say that their wellbeing in retirement is now in jeopardy because they have spent their savings on care for a loved one with a developmental disability. (Disability Scoop, 2011) Without adequate supports, families whose loved one requires physical care are experiencing the additional cost of their own physical health. Lifts, transfers, and other hands-on care of adults—sometimes larger or heavier now than their parents— often results in injuries, chronic pain, and

the need for medical interventions. The need for treatment and recuperation is often cast to the side because it would interfere with the provision of care. Also, individuals with severe or complex behavioral issues, requiring significant and difficult levels of management, deplete the stamina of aging parents and disrupt family stability. There are no definitive studies on the rates of depression or mental health issues in parents caring for an adult child with developmental disabilities. Instead, there are only the quiet whispers and shared confidences of parents about the drugs and doctors that are attempting to keep them functioning. For providers, the cost of the workforce crisis is extensive including: separation (administrative costs, processing costs, and increases in unemployment insurance rates), vacancy (overtime and temporary worker costs), replacement (advertising, interviewing, screening, and testing) and training and orientation costs. Adding to those expenses are increases in worker injuries causing lost days and increases in workman’s compensation rates, as well as

GREAT EXPECTATIONS: We are asking far more of DSWs than ever before, but we are neither training them to provide it nor setting compensation rates which align with the outcomes expected.

eparent.com | EP MAGAZINE • February 2016 51

lost productivity due to inexperienced workers and use of temporary staffing. (Seavey, D., 2004) It could be argued that we are at the point where the cost of not fixing this problem far outweighs an investment in fixing it. It is in the best interest of all stakeholders that we stop this expensive descent into a system increasingly impotent in meeting the needs it was designed to address.

CONCLUSION For Lauren, the cost of this workforce crisis will be the loss of her carefully crafted adult life—a life in which a young woman with many challenges has managed to find happiness, where she has gained an independence of which few thought her capable, and where her disabilities are less of a focus than her abilities. And, up until now, where people without a familial bond, have chosen to care for and about her. But that will soon be over. What is the alternative for Lauren? A group home? Besides the fact that it is not Lauren’s choice, what group home? Providers cannot expand capacity without adequate staff. Thousands of Laurens wait for an open slot. Providers are struggling to staff their homes and, though their efforts are laudable, I would fear for Lauren’s health and safety. For every tale of an amazing DSW that cares for their child, there are other parents of adults residing in group homes, who relate their experience of workers who cannot read instructions, a prescription bottle, or communicate in writing, where workers barely out of high school with little training, have the responsibility of care for individuals with challenging and varied needs, where the focus is on systemic requirements over person-centered choices. But, what else is left – a nursing home? Over my dead body. Parents do not unnecessarily fear a future for their children without them in it. It is all too apparent that this vulnerable population, with so limited an ability to speak up, complain, or ask

for what they need, is not being seen or heard above the raucous advocacy of more visible populations. Few of our children can fight for themselves. Few can advocate, when we can no longer be by their sides, for the right to be supported by people adequately prepared and compensated to provide that support. For parents to be confident that their children could survive in this world without them, we would need a direct support workforce, of adequate number, trained to provide the supports our children need to be safe, healthy, and happy. And, if our children are ever going to be respected members of their community, the people who support them must be respected as well. A concerted effort must be made to not only change the public perception of direct support to one of value – a respected aspiration— but also to provide a living wage, adequate benefits, and opportunity for advancement as recognition of the difficult, worthwhile, and rewarding work that is direct support. When the day comes that Lauren must leave her home, she will not have the ability to understand why. I would not have the ability to explain it to her, anyway. She has answered well the call we all attempt to answer: “be all that you can be.” To the world around her, it seems not to matter how brave she has been or how gracefully she has accepted challenges most of us cannot fathom. The world will have failed her in an unconscionable way. Her simple life will fall apart without the DSWs she relies on to survive. And, she will be left unable to ask the most important question in her silent world: Who will be there to care for me tomorrow? • ABOUT THE AUTHOR: Gail Frizzell is the parent of an adult daughter with severe, multiple developmental disabilities. She has been an active parent advocate for over twenty years primarily in the areas of special education, family support, and self-direction. She is currently chairing the Direct Support Workforce Crisis Workgroup under the aegis of the Family Support Coalition of New Jersey.

References Access Press Staff. Poverty pay for professional work? Commitment to community: Advocates launch 5% Campaign. (2013, August 10). Access Press. Retrieved August 6, 2014, from http://www.accesspress.org/2013/08/poverty-pay-for-professional-work-commitment-to-community-advocates-launch-5campaign/ American Network of Community Options and Resources. 2009 Direct Support Professionals Wage Study. Retrieved on August 29, 2015 from http://www.ancor.org/sites/default/files/pdf/ancor_wage_data_summary_2009.pdf The ARC. (2011, June). Still in the Shadows with Their Future Uncertain. Retrieved August 2, 2015 from http://www.thearc.org/document.doc?id=3672 Baffuto, T. (2008, February 19). The ARC of New Jersey's 10% Solution. Retrieved August 6, 2014, from www.arcnj.org/file.../d7977e4b-82a9-4937-bdea-d983db9c4e34 Brill-Ortiz, J. (2014, May 13). Why Direct Care Worker Wages Are Key to Closing the Gender Wage Gap. Huffington Post. Retrieved July 31, 2015 from, http://www.huffingtonpost.com/jessica-brill-ortiz/why-directcare-worker-wages-are-key-_b_4931203.html Brill-Ortiz, J. (2014, March 12). The New Face of Our Economy. Huffington Post. Retrieved July 31, 2015 from, http://www.huffingtonpost.com/jessica-brill-ortiz/the-new-face-of-our-economy_b_4576106.html Diament, M. (2011, June 15). Disability Caregivers Struggling Financially, Emotionally. Retrieved October 6, 2015, from http://www.disabilityscoop.com/2011/06/15/disability-caregivers-struggling/13339/ Greene, A. (2000). Barriers to self-determination -- what’s next?: A service coordinator and point of entry perspective. In Measure for Measure: Person centered quality assurance. Wingspread conference proceedings, Racine, WI. Hall, P.S., & Hall, N.D. (2002). Hiring and retaining direct-care staff: After fifty years of research, what do we know? Mental Retardation Hewitt, A, Lakin, K.C. (2001, May). Issues in the Direct Support Workforce and their Connections to the Growth, Sustainability and Quality of Community Supports. Retrieved July 31, 2015, from http://rtc.umn.edu/docs/hcfa.pdf Hewitt, A. (2014, October 17). A Sustainable and Supported Workforce: The Key to Quality Community Life. Lecture presented at Developmental Disabilities Lecture Series in The Hotel Woodbridge at Metropark, Iselin. Hewitt, A., Larson, S.A. and Lakin, K.C., (2000) An Independent Evaluation of the Quality of Services and System Performance of Minnesota’s Medicaid Home and Community Based Services for Persons with Mental Retardation and Related Conditions. Minneapolis: University of Minnesota. Kansans Mobilizing for Direct Support Workforce Change. (n.d.). Retrieved August 6, 2014, from

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http://rtc.umn.edu/docs/KSFinalReport.pdf Larson, S., Lakin, K.C., & Hewitt, A. (2002). “Direct support professionals: 1975 - 2000.” In D. Croser, P. Paker, & R. Schalock (Eds.) Embarking on a new century: Mental retardation at the end of the 20th century. Washington, DC: American Association on Mental Retardation Legislative Budget and Finance Committee. (1999). Salary levels and their impact on the quality of care for client contact employees in community-based MH/MR programs. A report in response to House Resolution 450. Harrisburg, PA The Lewin Group. (2008). A synthesis of direct service workforce demographics and challenges across intellectual/developmental disabilities, aging, physical disabilities and behavioral health. Washington, DC: Author. Macbeth, J.M. Commitment, Capacity and Culture: Solutions for the Direct Support Workforce Crisis. (August 2011) The National Alliance for Direct Support Professionals. National Direct Service Resources Center. (2009). DSW RC Worker Background Handout. Retrieved August 6, 2014, from http://www.dswresourcecenter.org The New Jersey Council on Developmental Disabilities Recommendations on the Direct Support Professional Workforce. (2014, May 1). Retrieved October 7, 2015, from https://www.njcdd.org/2012-04-2313-42-40/position-statements/direct-support-professionals Parallels in Time: A History of Developmental Disabilities. (n.d.). Retrieved September 12, 2015, from http://mn.gov/mnddc/parallels/index.html PHI Fact Sheet. (2011, February 1). Retrieved October 7, 2015, from http://www.phinational.org/sites/phinational.org/files/clearinghouse/NCDCW Fact Sheet-1.pdf Seavey, D. (2004, October 1). The Cost of Frontline Turnover in Long-Term Care. Retrieved October 7, 2015, from http://phinational.org/sites/phinational.org/files/clearinghouse/TOCostReport.pdf Scala, E., Hendrickson, L., & Regan, C., May 2008. “Strategies for Promoting and Improving the Direct Service Workforce: Application to Home and Community-Based Services.” Rutgers Center for State Health Policy, Institute for Health, Health Care Policy and Aging Research. Selected Caregiver Statistics. (2012, December 31). Retrieved October 6, 2015, from https://caregiver.org/selected-caregiver-statistics U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and Long-Term Care Policy. (2006, January). The supply of direct support professionals serving individuals with intellectual disabilities and other developmental disabilities: Report to Congress. Washington, DC: Author.

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

54 DEPRESSION IN ACTIVE DUTY SERVICE MEMBERS AND THEIR FAMILIES By Jennifer Woodworth, PSY.D MILITARY NEWS

58 CHILDREN OF FALLEN PATRIOTS FOUNDATION CONTINUES TO EXPAND IN THE NEW YEAR MILITARY LIFE

60 UNDERSTANDING ACCESSIBLE HOUSING: THE FAIR HOUSING ACT PUZZLES & CAMO

61 COME FLY WITH ME By Shelly L. Huhtanen

U.S. MILITARY H

Many times, symptoms of depression that continue or worsen are underreported due to the possibility of impact on career advancement or minimizing the impact on daily functioning.

Depression in Active Duty service

MeMbers & their FAMilies BY JENNIFER WOODWORTH, PSY.D

More thAn DeployMents Military lifestyle involves more than just deployments. Stress on the family and children can include many moves, changing schools, leaving friends and community connections, the unique language of the military and constant training and separation of the active duty service member. Daily challenges and days of low mood are normal throughout people’s lives. When these and symptoms listed below occur daily for at least two weeks, consult with your primary care physician for an assessment of depression and treatment options.

Depression in Active Duty service Members

on career advancement or minimizing the impact on daily functioning. Stigma related to any mental health issue can make service members hesitate in asking for help, with the long held belief that asking for help will impact their ability to maintain strength and lessen their role as a leader in the community. This can lead to many years passing before receiving treatment that can improve the service member’s ability to work through the depression and have a successful career and family life.

risk factors related to active duty service member:

SSION A RE

• Number of combat deployments • Loss of combat support personnel • Time in combat or separated from support • Past history of depressive episodes • Substance abuse • High demand from unit or command • Lack of promotion

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According to the Millenium Cohort Study (2014), the rates of depression among male service members prior to any deployment is 3.9%, however rises to 5.7% when returning from combat deployment. For women, the percentage doubles from 7.7% prior to any deployment to S MA N AGE 15.7% after a combat deployment. Deployments are not the only stressful part of being a military family; Much attention is given to active duty and retired milihowever deployments can lead to significant physical or psy- tary members, as it should; however the signs and symptoms of chological traumas experienced by the service member result- depression in spouses often get overlooked. The majority of ing in changes in daily functioning. spouses are women; some of whom may be having difficulty with Naturally, as the deployment ends and transition to family parts of the military lifestyle, including being separated from their occurs, there will be a period of time where moods, feelings, family, spending much time on their own, being the primary and behaviors shift to meet the demands of the environment. caregiver for young children, managing the household duties, However, many times, symptoms of depression that continue and the inconsistent schedule of daily demands of the service or worsen are underreported due to the possibility of impact member’s work. Symptoms might be more subtle including

Depression in spouses

H U.S. MILITARY increase in irritability, lack of motivation to complete daily tasks or only taking care of the minimal daily chores (taking care of the children).

risk factors for spouses • Post-partum “baby blues” • Past history of depressive episodes • Caregiving for a family member with health issues • Spouse experiencing mental health issues related to a deployment • Feeling lonely • Not being able to “recharge” or take a break • Lack of support from community

Depression in children and Adolescents

According to the National Institute of Mental Health, about 11 percent of adolescents have a depressive disorder by age 18. Being part of a military family can increase some of the risks of depression which can be a chronic illness or a short term reaction to a life stressor. Sometimes, with the stresses of everyday life, a child or adolescent’s mood or behavior in a military family can be seen as typical teenage behavior without taking into account the experience of additional risk factors. Identifying a change in mood or behavior can assist in establishing treatment quickly and limit the disruption to the child’s self-esteem, peer relationships, and academic performance.

risk factors related to children and adolescents • Friends moving, being “left behind” • Changing schools (either due to moving or transition to middle or high school) • Being a victim of bullying at school or in the neighborhood • Struggling in academics • Feeling lonely • Lack of support from parents or community • Unsupervised time

Additional risk factors that may contribute to symptoms of depression • Upcoming deployment or homecoming • Frequent separations of active duty service member including field training or detachments lasting days, weeks, or months • Location of duty station • Health issues (physical, emotional, or mental) • Changes in role at home • Moving • Hormones • Changes in the family structure (divorce, re-marriage, new baby) • Death of a family member or friend • Trauma (car accident, witness to violence) • Abuse (physical, emotional, sexual)

protective factors that increase resilience from experiencing depression

• Family involvement, which includes providing limits, rules, structure, and monitoring • Healthy modeling of coping with stress, asking for help, open communication • Sufficient amount of sleep • Ability to identify and describe emotions • Effective clinical care for mental, physical, and substance use disorders • Easy access to a variety of clinical interventions • Support for seeking help • Strong connections to family • Community support • Financial stability of family • Support through ongoing medical and mental health care relationships • Skills in problem solving, conflict resolution and nonviolent handling of disputes • Participation in extra-curricular activities in two or more of the following contexts: school, with peers, in athletics, employment, religion, culture

these are symptoms to be aware of that may indicate depression

• Changes in appetite, either eating more or less than usual. Significant weight loss or weight gain. This can be seen as binge eating, eating unhealthy food or loss of appetite with limited food intake. • Changes in sleep patterns; sleeping more or less than usual. This could be expressed as sleeping during the day, staying up most of the night, or difficulty getting up in the morning for school or activities. • Changes in motor activity. Look for slower movements including increased time getting dressed or restless energy such as increased fidgeting. • Fatigue, lack of energy, or being bored. Look for lack of motivation including not attending previously enjoyed activities or isolating from family or peers. • Feelings of worthlessness or guilt. Service members returning from combat might have feelings of survivor’s guilt if they have experienced the death or injury of peers. Adolescents might express thoughts of not being good enough or guilty for not appreciating what they have. They may take the blame or responsibility for negative events or outcomes. • Persistent sad or irritable mood. Look for crying more than usual, changes in appearance or clothing choice, or increase in hostility with parents or teachers. • Frequent vague, non-specific physical complaints. Some adolescents experience frequent stomach aches, headaches, or muscle aches related to depression. • Reckless behavior and/or alcohol or substance abuse. Any eparent.com | EP MAGAZINE • February 2016 55

U.S. MILITARY H member of the family may use substances to deal with feelings of sadness to numb or forget about their stresses. They may engage in activities that put their physical health at risk due to feelings of guilt or worthlessness. • Decreased concentration or indecisiveness. This may be expressed as an “I don’t care” attitude in decisions that the family member usually had an opinion. • Frequent absences from school or poor performance in school. This can indicate decrease in motivation and energy or may include behavior problems with teachers or peers.

• Recurrent thoughts or attempts of self-harm or suicide. Always take this seriously when a family member mentions death or self-harm and contact a mental health professional as soon as possible.

what you can do If you recognize these symptoms in someone you know, sometimes knowing what to do next can be a challenge. • Open a discussion about changes you have noticed and express your concern. Ask if your family member has noticed these changes and what may be contributing to them.

FURTHER RESOURCES FOR MILITARY FAMILIES After Deployment http://afterdeployment.dcoe.mil/ http://afterdeployment.dcoe.mil/topics-depression

American Academy of Child and Adolescent Psychiatry – Military Family Resource Center www.aacap.org/AACAP/Families_and_Youth/Resource_Centers/Military_Families_Resource_Center/Home.aspx

American Academy of Pediatrics - A Teen's Personalized Guide for Managing Stress http://www2.aap.org/stress/buildreshelp-teen.htm

American Psychological Association www.apa.org/about/gr/issues/military/critical-need.aspx /

National Institute of Mental Health www.nimh.nih.gov/health/topics/depression/index.shtml www.nimh.nih.gov/health/publications/depression-in-children-and-adolescents/index.shtml

National Military Family Association - 10 Things Teens Want You To Know http://support.militaryfamily.org/site/DocServer/TOOLKIT_8.5x11_proof6.pdf?docID=15601

National Military Family Association – Operation Purple www.militaryfamily.org/our-programs/operation-purple/

F.O.C.U.S. Project www.focusproject.org/home

Military Mental Health Online Screenings /www.militarymentalhealth.org/

• Contact a primary care physician or insurance for a referral to mental health professionals who specialize in depression and understanding of the current military lifestyle. • Explore multiple treatment interventions including individual or group psychotherapy and/or medication assessments. • Continue to provide support to your family member by listening to their concerns and following up with mental health appointments. Intervention programs available for military families include education and skill development for handling situations unique to military life.

F.o.c.u.s. Families Overcoming Under Stress is a family centered approach that is developed from evidenced-based research to increase resiliency and decrease risk in military families. F.O.C.U.S.’ purpose is to increase the resiliency of the family during a stressful time. Identifying and regulating emotions (anger, sadness, fear, guilt), finding the deployment triggers that increase emotions, communication within the family, problem solving, and goal setting are points focused on during sessions.

For children and Adolescents Operation Purple Camp Intervention provides connection and social support for children and adolescents in military families. It is designed as a one-week camp to promote healthy coping strategies to utilize during deployments (Chawla & McDermid Wadsworth, 2012) •

References Schaller, E. K., Woodall, K. A., Lemus, H., Proctor, S. P., Russell, D. W., & Crum-Cianflone, N. F. (2014). A longitudinal comparison of posttraumatic stress disorder and depression among military service components. Military Psychology, 26, 77-87. http://dx.doi.org/10.1037/mil0000034

Military OneSource www.militaryonesource.mil/crisis-prevention?content_id=268946 www.militaryonesource.mil/deployment-and-transition/

National Suicide Prevention Hotline 1-800-273-TALK (1-800-273-8255) or TTY: 1-800-799-4889. This hotline is a 24-hour, toll-free suicide prevention service available to anyone in suicidal crisis. You will be routed to the closest possible crisis center in your area. Your call is free and confidential. TriCare www.tricare.mil/contactus.aspx

56 February 2016 • EP MAGAZINE | eparent.com

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.

MILITARY NEWS CHILDREN OF FALLEN PATRIOTS FOUNDATION CONTINUES TO EXPAND IN THE NEW YEAR he new year provides an opportunity for Children of Fallen Patriots Foundation to reflect on the success of the past year and the growth of the year to come. As the foundation rapidly expands, Fallen Patriots has announced they are relocating their headquarters to Reston, Virginia, located 20 minutes west of Washington, DC. The new location will provide more strategic opportunities to better locate and serve the 20,000 Gold Star children who have lost a parent in the line of duty. Fallen Patriots will maintain a presence in Jacksonville, Florida, but will officially move into their new headquarters March 1, 2016. The success of Fallen Patriots can be told by countless Gold Star students, but the need for financial support continues to grow. Many surviving families struggle to make ends meet with sixty percent of surviving spouses making less than $50,000 per year. Fallen Patriots works to find each and every one of these surviving families with the intent to give them the future they deserve. With each scholar, Fallen Patriots strives to provide the education their fallen patriot would have wanted for them. Sarah Greene, for instance, lost her husband, Marine Corps pilot David Greene, when he was shot and killed during a helicopter mission in Iraq. She immediately felt the weight of responsibility to secure a successful future for their 10-year-old daughter Jena and

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NEVER FORGET: Joint Base McGuire-Dix-Lakehurst dedicated a hangar in honor of Lt. Cols. David S. Greene who died in service to his country. eight-year-old son Wesley. “In the midst of all the shock and disbelief of losing David, my biggest concern was how I would take care of our children and their futures alone,” explained Greene. “I started worrying literally within days of his death.” As the New Year begins, Fallen Patriots is asking their followers to Resolve to Involve themselves in their mission by simply: • Spreading awareness by following Fallen Patriots on Twitter, Facebook and Instagram: Share their posts with your friends! • Become a monthly donor: Just $10 a month can change the future for a Fallen Patriots scholar.

ABOUT FALLEN PATRIOTS

Children of Fallen Patriots Foundation honors the sacrifices of military heroes by ensuring the success of their children through college education. Since 2002, Children of Fallen Patriots has provided more than $10 million in total assistance, including college scholarships, supplemental grants and educational counseling to military children who have lost a parent in the line of duty. Nearly 20,000 children from all across America will need future assistance. Help today by visiting fallenpatriots.org. 58 February 2016 • EP MAGAZINE | eparent.com

• Sponsor a fundraiser or host an event: Choose Fallen Patriots as your charity of choice for your next local event! “When people ask me what kind of year 2016 will be for Fallen Patriots, I smile broadly and say with conviction, a great one,” explained Kendra E. Davenport, Fallen Patriots President. It is Fallen Patriots’ sincere hope that their mission will continue to be shared with such success. Every donation helps bridge the gap in the cost of college education for military children. Fallen Patriots invites others to be a part of celebrating the new year with a new tradition of generosity.

FOLLOW CHILDREN OF FALLEN PATRIOTS

Twitter: twitter.com/fallenpatriots Facebook: www.facebook.com/FallenPatriots Instagram: instagram.com/fallenpatriots/ Google+: plus.google.com/+FallenpatriotsOrg/posts YouTube: www.youtube.com/user/FallenPatriotsFound

PHOTO COURTESY U.S. AIR FORCE PHOTO/STAFF SGT. KATHERINE TEREYAMA

H U.S. MILITARY

VIETNAM VETERANS FIGHT WAR ON WALL STREET IN ACTION-PACKED THRILLER D'Amini received national acclaim and justment as veterans strive to attain onnie DeAngelo was a force to be remains a “Back in Print Classic” of The the American Dream and transition reckoned with in the jungles of Authors Guild. His new book, Gold in the to civilian life. Vietnam. Faced with explosions Coffins, was awarded the CIPA 2015 EVVY • How experiencing extreme tragedies that came close to taking his life, he was Award for best book in the can make you stronger, more coma young Marine filled with passion and Mystery/Detective – Thriller category. mitted to succeed, and establish purpose, willing to do whatever was necLearn more about Certo at www.dominicunbreakable bonds. essary to eliminate the enemy. Now, years certo.com • How the American system is broken, later, he is faced with a darker enemy at Len Harac, PH.D, is cohome – the wolves of Wall author of Gold in the Street. Coffins, and President of In Gold in the Coffins, Harac Consulting. For 20 bestselling author years, he has been providDominic Certo, K.S.J and ing strategic and tactical co-author Len Harac, Ph.D, business consulting. As a reveal the story of a tightfrequent participant of knit band of retired military and security style Marines who bonded duradvanced tactical training ing a bloody tour of duty. programs, Dr. Harac has After returning from decoexperience over a wide rated combat service in array of industries, includVietnam, Donnie became ing public relations, and the CEO and founder of a has served as an advisor successful upscale restaufor the Police Chiefs’ rant chain that he builds Association. This is his into a major corporation. first novel. Learn more When he and his combatabout Dr. Harac at weary comrades are perwww.harac.com • suaded to take their com- ON THE WATCH: Domenic Certo on sentry duty, Landing Zone Baldy in pany public, they enter a central Vietnam in 1970. treacherous journey through the battleoften exploiting the people who fields of American business. Faced with believe in it and defend it. bankruptcy, jail, and an even darker • How the integrity of loyalty and demise, the three friends are forced to courage is earned, developed, and take on the system they once fought to strengthened over time. defend. Dominic Certo, KSJ is a decorated war Inspired by his personal experiences while serving in the military and taking veteran who served with the 7th Marines his own company public, Certo exposes in Vietnam, receiving numerous medals the complexity of the American Dream as of valor. Veterans’ issues are close to his heart, and as an advisory board member a mixture of greed and glory. “Wars exist on a number of different of Operation Homefront, Certo works levels,” says Certo. “From combat mis- with the non-profit to offer stability for Title: Gold in the Coffins sions to Ponzi schemes and conspiracy, military families by providing food, hous- Authors: Dominic Certo, K.S.J and people are challenged by corruption and ing, and ongoing support. One of Certo’s Len Harac, Ph.D broken institutions in the pursuit of their sons is currently in the military and has Paperback: 268 pages dreams. How they deal with the struggle served Afghanistan and Iraq with the Blue Publisher: Harmita Press, 2015 Angels. Certo has been named the 2015 ISBN: 0578155168 is what makes them true warriors.” In this taut tale of greed, murder, and Literary Artist of the Year for The Italian Available on Amazon, Barnes and Tribune and Columbus Foundation. His Noble, and most brick and mortar revenge, readers discover: first novel, The Valor of Francesco retailers. • The struggles of survival and read-

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MILITARY LIFE U N D E R S TA N D I N G A C C E S S I B L E H O U S I N G

THE FAIR HOUSING ACT

ou know how difficult it can be to get around on crutches or in a wheelchair. You may need a wheelchair ramp or wider doorways in order to enter a building or even your own home. An accessible home is one that allows its occupant to do what he or she wants and needs to do, as independently as possible. The good news is, if you or your family member has a disability that requires special housing accommodations, you're protected under the Fair Housing Act. This includes military installation housing. If you or someone in your family is disabled, your home may need specific modifications to make it accessible for daily living. Fortunately, through the Fair Housing Act, there are laws that require property owners to make, or allow residents to make, a home accessible for those with specific or special needs.

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THE FAIR HOUSING ACT The Fair Housing Act requires housing providers to: • Make reasonable accommodations for people with disabilities. A property owner, however, is not required to make changes that would create an undue financial or administrative burden. • Allow people with disabilities to make reasonable modifications. Property owners must allow residents to make changes to their units if those changes are necessary for the tenant to use the unit fully. The Fair Housing Act also makes it illegal — based on your or family member's disability — to: • Refuse to rent a dwelling or to accept a legitimate offer • Evict someone • Use different applications or criteria • Segregate people to specific units or areas • Ask if anyone has a disability • Refuse to make or allow reasonable modifications or accommodations The Fair Housing Act applies to most housing options. In fact, many states have fair housing laws that provide even greater protections. For your specific state law, contact your public housing agency.

DID YOU KNOW? Did you know that the Architectural Barriers Act requires access to all buildings designed, built, altered or leased with federal funds? According to the United States Access Board, at least 5 percent of each military installation's housing is required to be either accessible or readily and easily modifiable for accessibility. PRIVATIZED HOUSING FOR MILITARY MEMBERS WITH A FAMILY MEMBER WITH SPECIAL NEEDS In privatized housing on military installations, property managers are required to make reasonable alterations and accommodations that abide by the Americans With Disabilities Act at no cost to the tenant. WHAT FAMILIES WITH SPECIAL NEEDS SHOULD DO PRIOR TO RELOCATION The availability of affordable on- and off-installation housing varies from one location to another. Military families with special housing requirements should contact the housing office or the Exceptional Family Member Program coordinator at their new duty location as early as possible. You can find contact information for both of these resources through Military Installations. HOW TO HANDLE ACCESSIBLE HOUSING DENIALS If you've been wrongfully denied accessible housing, you should: • File an administrative complaint. You can file a complaint with the Department of Housing and Urban Development within one year. To bring action under state law, contact the responsible state agency. • File a private lawsuit. You can file a suit in federal court within two years. However, deadlines for state court actions vary. Moving is stressful, but for military families with special needs it can be even harder. If you or your family member has specific accessibility needs, reach out to your new installation's housing office for help in finding a home that has everything you need to make your life as easy and comfortable as possible. • (Military Onesource Website)

60 February 2016 • EP MAGAZINE | eparent.com

PUZZLES & CAMO

SHELLY HUHTANEN

Come Fly With Me The flight crew introduced themselves… They too had children with autism and the pilot who led the tour, Erich Andrew Ries, had flown several times with his son on the spectrum.

The thought of working through severe behavior in a closed compartment, flying through the air at 40,000 feet, around a hundred people I’ve never met, makes me want to vomit. Literally, vomit. As you can imagine, since our son’s diagnosis we have not flown together as a family on an airplane. Seven years have passed and we have managed to drive to every location or ask my parents to watch our boys so we do not have to endure this unthinkable act. Realizing that some day we may need to fly, we looked into an offer we could not refuse. A few weeks ago, we drove to the Atlanta airport to meet a flight crew from Delta airlines. They have started doing mock flights for children with autism to introduce the idea of families flying with their children on the spectrum. The flight crew introduced themselves. They were a special crew because they had something in common with us. They too had children with autism and the pilot who led the tour, Erich Andrew Ries, had flown several times with his son on the spectrum. Erich was different. He didn’t dwell on the fact that we hadn’t flown with our son in seven years. The Delta pilot instead spent time educating us and encouraged us that the thought of us flying together was not just a pipe dream. When we walked through the TSA checkpoint, I started to snarl. I thought to myself, “Oh this is going to be fun.” I was not allowed to curl my lip for too long. I quickly learned that some things have changed in the last seven years. The team discussed a program called TSA Care (1-855-787-2277). If you call ahead and explain to them your child’s disability and when you will be arriving, they will

work with you at the TSA gate. What a brilliant idea. We started to walk through the airport. Broden was a little uneasy, but he hung on to Mark and kept moving. Who really took me by surprise was Hayden. He was looking around and amazed at what was in the airport. “Mom, they have restaurants and stores in here! This place is huge!” I looked over and asked Hayden, “Honey, haven’t you seen the inside of an airport before?” I realized that the last time Hayden flew in a plane was when he was three years old. My heart sank. This is not only a new experience for Broden, but for Hayden too. Once we arrived at the gate, Erich gave us pointers on how to fly with our kids. He used his own experiences to educate us. He assured us that it was not always easy, but the key was to learn from our mistakes and to keep trying. 1. Book tickets as early as possible. Try to sit at the front of the airplane in window seats. Avoid the back of the plane because of the loud engines. 2. Create a story board of how you get to the airport and how you board the plane. This can give your child a way to prepare for the trip. Show the child a map. 3. Be smart about the way you pack. Get as much as you can in your checked bag and incorporate your child’s needs into packing. 4. Remember electronics that can be on during taxi and take off. 5. Choose carry on luggage that can be put under the seat. It’s easily accessible. If your child is on a special diet, be

sure to bring enough snacks. Show a medical prescription for any special medical formulas. 6. Once the plane takes off, pull the bag out onto the floor so the child can kick the bag instead of the back of the seat in front of them. 7. If you are flying with two parents, be strategic with boarding the aircraft. Have one parent board first to set up the seat area with your child’s favorite things. Then have the other parent with the child be the last to board so the child does not have to be on the aircraft while everyone else is boarding and getting settled. After Erich’s informative talk, I glanced over at Hayden and Broden. Their noses were smashed up against the glass looking at the aircraft. Our pilot said, “Alright, let’s board and see what it looks like inside.” Hayden couldn’t get enough of the aircraft. They were able to see the cockpit and push every button they were allowed to push. Not surprisingly, Broden found the first class seats the most comfortable. Are we ready to fly? I’m not sure. We still have more practicing to do, but flying together as a family is becoming more of a reality. It is comforting knowing there are airline carriers, like Delta, who understand the struggle. What seemed impossible a few months ago appears to be more of a tangible goal now. My hope is that this pattern of gaining tangible goals will continue throughout our son’s life. • 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.

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PRODUCTS AND SERVICES AQUATICS

EDUCATION

(New Jersey)

(New Hampshire)

(New Hampshire)

CROTCHED MOUNTAIN SCHOOL

CROTCHED MOUNTAIN SCHOOL

MATHENY MEDICAL AND EDUCATIONAL CENTER

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

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

ASSISTIVE TECHNOLOGY (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

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) (New Hampshire)

(New Jersey)

MATHENY MEDICAL AND EDUCATIONAL CENTER 65 Highland Avenue Peapack, NJ 07977 P: 908-234-0011 F: 908-781-6972 E: [email protected] www.matheny.org The Matheny Medical and Educational Center in Peapack, NJ, is a special hospital for children and adults with medically complex developmental disabilities; a special education school for students, ages 3-21.; and a comprehensive outpatient center meeting the needs of people with disabilities in the community. (Pennsylvania)

HMS SCHOOL FOR CHILDREN WITH CEREBRAL PALSY

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

4400 Baltimore Avenue Philadelphia, PA 19104 P: 215-222-2566 F: 215-222-1889 www.hmsschool.com A residential school for students up to age 21, who have severe, multiple disabilities.

(North Carolina)

HOSPITALS/REHAB CENTERS

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

CROTCHED MOUNTAIN SCHOOL

62 February 2016 • EP MAGAZINE | eparent.com

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

65 Highland Avenue Peapack, NJ 07977 P: 908-234-0011 F: 908-781-6972 E: [email protected] www.matheny.org The Matheny Medical and Educational Center in Peapack, NJ, is a special hospital for children and adults with medically complex developmental disabilities; a special education school for students, ages 3-21.; and a comprehensive outpatient center meeting the needs of people with disabilities in the community.

MOBILITY (Florida)

NMEDA 3327 West Bearss Avenue Tampa, FL 33618 P: 866-948-8341 P: 813-264-2697 F: 813-962-8970 www.nmeda.com NMEDA is a non-profit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists, and other professionals dedicated to improving the lives of people with disabilities and assisting with driving independence using wheelchair accessible vehicles.

NON-PROFIT (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

SCHOOLS/CAMPS/RESIDENCES (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

PRODUCTS AND SERVICES

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 45 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.

(New Jersey)

Occupational:

MATHENY MEDICAL AND EDUCATIONAL CENTER

(New Hampshire)

65 Highland Avenue Peapack, NJ 07977 P: 908-234-0011 F: 908-781-6972 E: [email protected] www.matheny.org The Matheny Medical and Educational Center in Peapack, NJ, is a special hospital for children and adults with medically complex developmental disabilities; a special education school for students, ages 3-21.; and a comprehensive outpatient center meeting the needs of people with disabilities in the community.

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

(Pennsylvania)

HMS SCHOOL FOR CHILDREN WITH CEREBRAL PALSY 4400 Baltimore Avenue Philadelphia, PA 19104 P: 215-222-2566 F: 215-222-1889 www.hmsschool.com A residential school for students up to age 21, who have severe, multiple disabilities.

SPEECH & LANGUAGE (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 Creative Arts: (New Hampshire)

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

CROTCHED MOUNTAIN SCHOOL

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

Speech: (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

VAN/VAN CONVERSION DEALERS (Florida)

NMEDA 3327 West Bearss Avenue Tampa, FL 33618 P: 866-948-8341 P: 813-264-2697 F: 813-962-8970 www.nmeda.com NMEDA is a non-profit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists, and other professionals dedicated to improving the lives of people with disabilities and assisting with driving independence using wheelchair accessible vehicles.

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