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EXCEPTIONAL PARENT MAGAZINE
DECEMBER 2018 $7.95
IN THIS ISSUE:
HOLIDAY TIPS for SPECIAL NEEDS FAMILIES
TRULY CONNECT this HOLIDAY SEASON
LOSING ONE VOICE to FIND ANOTHER
EP’s HOLIDAY EDITION:
family & community A TRIBUTE: LEAVING HER MARK
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ME D ICI N
DE V E LO PM
N T I S RY T
HELEN BEANGE E
PLUS: A PARENT’S PERSPECTIVE
COMMUNITY ALTERNATIVES to OUT-OF-HOME PLACEMENT
LJS Fac / X WE CAN HANDLE YOUR PROJECT
HOME ELEVATORS • STAIR ELEVATORS • AUTOMATED SYSTEMS Bring together more than thirty professionals, each a craftsman in his or her former industry, in one organization and no industry, situation, or challenge will be new to us. Not to say that we've seen it all. Technology adds novel challenges daily, making a flexible organization – one willing to grow in those new disciplines – invaluable.
The staff forms two teams, each offering comprehensive expertise in one of the company's two main divisions of facility services. The “Electrical Team” and the “HVAC/Mechanical Team” can cope with any situation an client or homeowner might encounter.
LJS Fac/X, a twenty-two year old company, has undergone its own evolution since the 1990s. Larry Smith began as an individual electrical contractor, founding the company as LJS Electric as his commercial clients grew his business. Larry saw the need to expand his capabilities, and, over the next two decades, he brought talented professionals together to complement each other's unique skill set. Together the staff of LJS Fac/X offers practical, hands-on experience in a broad array of specialties.
Contact: Vice President of Operations [email protected]
201-777-6625 LJS FAC/X, Inc. 430 Commerce Blvd, Unit C Carlstadt, NJ 07072
LJS FAC/X, INC. | 430 COMMERCE BLVD, UNIT C | CARLSTADT, NJ 07072 | 201-777-6610
DECEMBER 2018 VOLUME 48 ISSUE 12
16 FAMILY AND COMMUNITY COVER STORY
16 TEN HOLIDAY TIPS FOR FAMILIES OF CHILDREN WITH SPECIAL NEEDS Episcopal Center for Children
20 ADVOCACY: LOSING ONE VOICE TO FIND ANOTHER By Elizabeth Coolidge-Stolz, MD
25 DIRECT SUPPORT PROFESSIONALS FOR SPECIAL NEEDS FAMILIES DURING THE HOLIDAYS By John Raffaele, MSW
26 SHADES OF GRAY
29 COMMUNITY ALTERNATIVES TO OUT-OF-HOME PLACEMENT FOR CHILDREN WITH COMPLEX NEEDS
Contributed by SPAN A PARENT’S PERSPECTIVE
32 EFFECTIVENESS OF HOME AND COMMUNITY-BASED SERVICES PLAN Introduction by Rick Rader, MD
34 AUTISM-SCHMAUTISM: IN THE END, DARIUS MCCOLLUM WAS POOR AND BLACK
By Michael John Carley
By Kimberlee Rutan McCafferty
FEATURES 40 HELEN BEANGE HAS LEFT HER MARK By Seth Keller, MD
44 POWERING THROUGH TO REACH YOUR FULL POTENTIAL By Stephanie Corkett
42 STRESS BUSTERS FOR KIDS By Carol L. Rickard, LCSW
ON OUR COVER No matter which holidays your family celebrates, EP’s Family and Community Holiday Edition is filled to the brim with tips and strategies can help everyone enjoy the season... especially those with special needs like ADHD and autism. Read and share our articles, and enjoy this wonderful time of year! Coverage begins on page 16.
47 ep-magazine.com | EP Magazine • December 2018 1
DECEMBER 2018 VOLUME 48 ISSUE 12
DEPARTMENTS ANCORA IMPARO
4 AADMD POLICY PAPER ON DECISION MAKING IN INTELLECTUAL AND DEVELOPMENTAL DISABILITIES By Rick Rader, MD
6 WHAT’S HAPPENING 9 NEW PRODUCTS AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY
14 SURELY THERE ARE MORE THAN ABOUT 155,000 CHILDREN LESS THAN 5 YEARS OF AGE WITH DISABILITIES IN THE U.S. By H. Barry Waldman, DDS, MPH, PHD, Steven P. Perlman, DDS, MSCD, DHL (HON) and Charles D, Larsen, DMD, MS
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
56 PRODUCTS & SERVICES
MILITARY SECTION 48 STEPS MILITARY FAMILIES CAN TAKE TO TRULY CONNECT DURING THE HOLIDAY SEASON By Angela Shaw MILITARY LIFE
52 TEN SMART TIPS TO HELP MILITARY FAMILIES SAVE ON HOLIDAY SPENDING 53 CHILD CARE OPTIONS FOR MILITARY FAMILIES WITH SPECIAL NEEDS PUZZLES & CAMO
54 ANOTHER PERSPECTIVE By Shelly Huhtanen
EP FOR FREE! THE MISSION OF EXCEPTIONAL PARENT MAGAZINE IS TO GATHER AND SHARE INFORMATION AS TOOLS FOR POSITIVE CHANGE FOR THE SPECIAL NEEDS COMMUNITY. To subscribe to the free eMagazine or for the print magazine ($95 per year) go to: http://ep-magazine.com/so.php
2 December 2018 • EP Magazine | ep-magazine.com
48 STEPS MILITARY FAMILIES CAN TAKE TO TRULY CONNECT DURING THE HOLIDAY SEASON By Angela Shaw MILITARY LIFE
52 TEN SMART TIPS TO HELP MILITARY FAMILIES SAVE ON HOLIDAY SPENDING 53 CHILD CARE OPTIONS FOR MILITARY FAMILIES WITH SPECIAL NEEDS PUZZLES & CAMO
54 ANOTHER PERSPECTIVE By Shelly Huhtanen
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 48 ISSUE 12
Editor-In-Chief • Rick Rader, MD • [email protected]
Managing Editor • Vanessa B. Ira • [email protected]
Publisher • Vice President of Business Development & Sales Accounting Art Direction & Design Information Technology Expert
• Faye Simon • Lois Keegan • Leverett Cooper • Ron Peterson
• [email protected]
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Exceptional Parent (ISSN 0046-9157) is published monthly 11 times per year plus the special January Annual Resource Guide by TCA EP World, LLC, dba Exceptional Parent Magazine, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 Internet address: www.ep-magazine.com. All rights reserved. Copyright ©2018 by TCA EP World, LLC. Exceptional Parent™ is a registered trademark of TCA EP World, LLC Postmaster: Please send address changes to: Exceptional Parent,1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012. Any applicable periodical postage paid at Johnstown, PA and additional mailing offices (USPS 557-810). Basic annual subscription for EP Digital is free. Limited edition print subscription $95.00. Subscriber Service: Direct all inquiries & address changes to: Exceptional Parent, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 08758. Customer Service/New Orders: E-mail: [email protected]
or call toll free: (800) 372-7368 extension 119. Back issues incur a charge of $10.00 each and depend upon availability, call (800) 372-7368. Agreement #1420542
EP EDITORIAL ADVISORY BOARD
Jean F. Campbell Principal, JF Campbell Consultants; Founding Board Member, Professional Patient Advocates in Life Sciences (PPALS) Henry G. Chambers, MD Pediatric Orthopedic Surgeon, Rady Children’s Hospital; Prof. of Clinical Orthopedic Surgery, Univ. of California, San Diego
Steven P. Perlman, DDS, MScD, DHL (Hon) Clinical Prof., Boston University, School of Dentistry, Boston, MA
Mahlon Delong, MD Chair, Dept. of Neurology, Emory University, Atlanta, GA
Matthew Holder, MD CEO, Lee Specialty Clinic, Louisville, KY Global Medical Advisor for Special Olympics International
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
Dr. David Fray Associate Professor, Department of General Practice and Dental Public Health, University of Texas School of Dentistry, Houston, TX
Gary Liguori, Ph.D Fellow of the American College of Sports Medicine (ACSM), Dean, College of Health Sciences, University of Rhode Island
Allen Friedland, MD Pediatrician and Internist Pediatric to Adult care Advisor Wilmington, Delaware 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 Joan Earle Hahn, Ph.D., APRN, CGNPBC, GCNS-BC, CNL, CDDN, Gerontological Advanced Practice Nurse Consultant; Past President, Developmental Disabilities Nurses Association
Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY Kathryn O’Hara, RN Epilepsy Nurse Clinician, Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University, Richmond, VA
Esther Schleifer, MSW Clinical Social Worker, Boston, MA Howard Shane, PhD Director, Communications Enhancement Center, Children’s Hospital, Boston, MA Stephen B. Sulkes, MD Pediatrician, University of Rochester Medical Center, Rochester, NY Steven M. Wolf, MD Director of Pediatric Epilepsy at Beth Israel Medical Center, New York, NY; Director of Pediatric Neurology at St. Lukes Roosevelt Medical Center, New York, NY
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EP magazine neither endorses nor guarantees any of the products or services advertised in the magazine. We strongly recommend that readers thoroughly investigate the companies and products being considered for purchase, and, where appropriate, we encourage them to consult a physician or other credentialed health professional before use and purchase.
DE V E LO 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
Mary M. Keller, ED.D President and CEO, Military Child Education Coalition, Harker Heights, TX
N T I S RY T
Ronald G. Blankenbaker, MD Univ. of Tennessee Health Science Center, Chattanooga, TN; President, American Association on Health and Disability
Kyle Hauth Executive Director, Orange Grove Center, Chattanooga, TN
ME D ICI N
Mark L. Batshaw, MD Prof. and Chairman, Dept. of Pediatrics, The George Washington Univ. Medical Center, Washington, DC
Stephen L. DeFelice, MD Founder and Chairman of the Foundation for Innovation in Medicine (FIM)
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
ep-magazine.com | EP Magazine • December 2018 3
RICK RADER, MD
IN THE BALANCE: The Doctor by Sir Luke Fildes (1887) depicts a Victorian doctor contemplating a medical decision, while observing the critical stage in a child’s illness.
AADMD Policy Paper on Physician Decision Making in Intellectual and Developmental Disabilities The operative question should always be, “If this patient did not have an intellectual/ developmental disability, which treatment would be in the patient’s best interests?”
“If this patient did not have an intellectual/developmental disability, which treatment would be in the patient’s best interests?” Clinicians are often faced with difficult decision-making regarding treatment options for patients with intellectual and developmental disabilities. The options often relate to withholding treatment, providing aggressive treatment or simply watching and waiting; they can be summed up with “starting something or 4 December 2018 • EP Magazine | ep-magazine.com
stopping something.” Physician decision making is the process by which clinicians review the pertinent particulars of the patient, their condition, treatment options and resources. They include evidence-based plans, guidelines, their experience, consultations and the personification of the patient. This is different from Informed Consent and Supported Decision
Making, where the patient is provided the clinical picture, outcomes, options, statistics and, often, the physician’s personal recommendations and their choice(s) are welcomed and respected. Historically, these treatment decisions involve organ transplantation, referral to hospice care, inserting of feeding tubes, initiation of a ventilator, enrolling in a research program
IMAGE COURTESY WIKIMEDIA COMMONS
WHAT’S HAPPENING or clinical trials and placement in a longterm care facility. While these treatment dilemmas are also seen in the general patient population, the addition of an existing cognitive impairment complicates the landscape and challenges the clinician. Dr. Harold J. Schoolman, former Deputy Director for Research and Education at the National Medical Library addressed the medical decision-making process: “A physician who is 90 per cent certain about any decision will always seek additional information in the hope that it will increase the confidence with which he makes such a decision. The decision… will be either correct or incorrect, and the outcomes is independent of the confidence with which the decision is reached. When additional information cannot possibly alter the decision, but only gives rise to a greater sense of comfort on the part of the physician, such additional information is of no benefit to the patient. Its only benefit is in reducing the discomfort of the physician” (New England Journal of Medicine) It is the belief of the American Academy of Developmental Medicine and Dentistry (AADMD) that the presence of an intellectual disability should not be considered as “additional information” in the decisionmaking process. Physicians must address their own individual bias in assigning “value” to patients with intellectual and developmental disabilities.
Act (ADA). The reasons for refusing people with intellectual and developmental disabilities to receive solid organs have been discounted (they included limited life span, quality of life, compliance with postsurgical regimens and societal contribution). The criteria for recipient selection are now made without the component of the intellectual and developmental disability as a consideration co-factor. The same holds true for referral to hospice care. The determination should be restricted to the guidelines which center around the “six months of expected life” criteria. The statistically shorter life expectancy of a person with an intellectual and developmental disability should never be a justification for admission to hospice care. The lowered “quality of life” that is often referenced to hospice care placement (in patients with intellectual disabilities) is a reflection of bias, prejudice, judgment and other mythology.
Big Apple Circus and National Therapy Center Embrace Autism
Position Paper Pearl: “When your values are clear to you, making decisions becomes easier.” ~ Roy E. Disney
he current prevailing ethical stronghold in the organ transplant arena is: “A patient’s age, gender, religion, beauty, income, contribution to society or any other extraneous factor should not be tied to whether they receive an organ.” (A. Schafer, University of Manitoba, Centre for Professional and Applied Ethics). Beyond medical ethics, this position has been upheld by the Americans with Disabilities
n summary, it is the position of the American Academy of Developmental Medicine and Dentistry that all treatment-based medical decision making should be derived without the consideration of a co-existing condition involving compromised intellect. Thus, the operative question should always be, “If this patient did not have an intellectual/developmental disability, which treatment would be in the patient’s best interests?”•
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
The National Therapy Center and Big Apple Circus are joining forces for a Big Autism Friendly Circus Event. The circus event has been modified to accommodate individuals with autism and their families, with modifications to the sound and lighting. In addition, the site will also provide sensory and calming areas for individuals and their families. There will be special guests for the show: Mallory Lewis and Lamb Chop will be the guest MC’s. Mally (daughter of Shari Lewis) and Lamb Chop’s performance resonates with audiences from toddlers to seniors, who grew up watching Shari Lewis and Lamb Chop on TV. Mally’s high energy is extremely well received and the nostalgic performance is filled with contemporary music, topical comedy and hilarious audience participation as well as vintage footage of Shari and Lamb Chop. For more information about Mallory Lewis, visit http://mallorylewisandlambchop.com February 23, 2019 at 11:00 am and February 23, 2019 at 2:00 pm 238 Waterfront St, Oxen Hill, MD 20745 ep-magazine.com | EP Magazine • December 2018 5
UNCOVERING ABILITIES WHILE CREATING A MORE INCLUSIVE COMMUNITY
STAND AND CHEER: Lemonade Leaders Owen Whitaker (center) and Henry Scruggs (right) offer lemonade to passersby to raise camp funds and awareness of children with special needs.
In a world where children are often separated by ability, it's time to shift the paradigm. At Extra Special People (ESP), we’ve made it our mission to offer kids with special needs the same opportunities that typical kids have: playing sports, participating on a swim team, enjoying after-school activities like cooking and dance, giving them the joys of camp and much more. ore than 400 families get to see their child come to life while they have the opportunity to play, engage with friends and be a part of a team. And while it is important to them, through my lens, I have seen that it is life-giving to our society as a whole. We are seeing that typical kids are learning life from kids with disabilities. So, how do we integrate typical kids and their experiences with those with special needs? As with any other change in our culture, it takes time and intentionality. When spending time with kids with special needs, it does not take long to see beyond their disability to their ability. Places like ESP are changing the outlooks and perspectives of our participants and our community at large. How can we spread that contagious joy and acceptance to more people across our communities? Here is how we are doing it.
6 December 2018 • EP Magazine | ep-magazine.com
LEMONADE LEADERS Lemonade Leaders grew from an opportunity we recognized in the community. Parents of typical kids under the age of 12 often come to ESP looking to instill values like volunteerism and compassion in their children. At the same time, the popularity of children hosting lemonade stands in support of local charities began surfacing on social media. Seeing the impact of these lemonade stands, and knowing we wanted to create a meaningful and educational experience for younger children, Lemonade Leaders came to life. Lemonade Leaders is a program for typical children ages eight to 11 who want to help send their friends with disabilities to camp by setting up lemonade stands benefiting ESP. The kids participate in a four-part training program to learn about ability awareness, advocacy and service. The free program creates confident kids ready to run a lemonade stand for ESP. The Leaders create and promote their own stand and set their own goals, culminating their success by presenting their donation to ESP’s campers at summer camp. Each part of the training covers a different, relevant topic for the Leaders. They have learned about interacting with people with disabilities, and why ESP is important to the families who have children with special needs and desire emotional support. In part two, Leaders learned about using a mission and vision to fuel entrepreneurship, as well as how to market their stands, manage their donations and demonstrate strong servant leadership. The fundraising done through Lemonade Leaders is an extension of ESP’s year-round giving program, the ESP Fan Club. The Fan Club allows the community to support ESP’s year-round programs
PHOTOS PROVIDED BY SUZANNE RUTLEDGE
like summer camp and after-school with a monthly contribution. All of the funds raised through the lemonade stands will contribute to the same mission. Lemonade Leaders who reach their goals will become honorary Fan Club members and receive a flag to share their advocacy. In their achievements, the hope is that they also cultivate a lifelong understanding and empathy for children with special needs. They get to know kids with disabilities for who they are on the inside – their abilities – rather than what may hold them back. ESP has engaged more than 30 Lemonade Leaders in less than a year since its inception, and its Leaders have raised more than $7,000 collectively—but, their impact has extended far beyond the dollars raised.
surprise, Owen joined in the formation, positioning himself front and center in the photo-op. As I motioned for him to join me behind the camera, it hit me – Owen doesn’t see a difference between himself and our Joyristas. To him, they’re all a cohesive unit of friends that definitely belong in the same photo.
THE IMPACT In creating a more inclusive community, we see the impact of Lemonade Leaders, Baseball Buddies and Java Joy extending far beyond the walls of ESP. Multiple studies show that by educating children about individuals with disabilities at a young age, they become more accepting of differences throughout their entire life-
A BIG HIT: In conjunction with its new national partnership with Miracle League, ESP is encouraging Little League teams to partner with teams with special needs and become Baseball Buddies.
BASEBALL BUDDIES After ESP announced its goal to build the ESP Miracle League complex, a fully accessible baseball field, splash pad and playground, an extension of the Lemonade Leaders program naturally revealed itself. Next year, ESP aims to launch Baseball Buddies, an opportunity for local Little League teams to undergo similar ability awareness and advocacy training and fundraise for the future ESP Miracle League program. By providing the opportunity for typical baseball players to learn about the impact of creating accessible baseball to every kid, even those with disabilities, ESP aims once again to shift the mindset, deepen understanding and foster inclusivity amidst our youth.
JAVA JOY Another program that integrates young adults with special needs in our community is Java Joy, a mobile coffee cart that local businesses hire to serve coffee and muffins inside their respective offices. Through Java Joy, our “Joyristas” are integrated into businesses everywhere of every kind, and their contagious joy is breaking down barriers every day. It is remarkable to see hardened or shy employees melt into smiles when greeted by a Joyrista delivering their morning joe! Owen and I recently met up with the Java Joy team at a local car dealership where they regularly serve. I wanted to get a few pictures of the Joyristas on the job, working their magic. When there was finally a lull in customers craving their morning caffeine, I asked the Joyristas to gather around for a photo. To my
time and are more likely to form relationships with people with disabilities. Further, when youth are engaged in volunteerism at a young age, they are likely to continue this community involvement into adulthood and remain active citizens. Our Lemonade Leaders and Baseball Buddies begin as volunteers and advocates for ESP and our participants, and we see them carrying this advocacy and acceptance throughout their lifetime. For typical kids, these friendships teach the importance of loving others who are different from themselves. For kids with disabilities, these friendships provide feelings of acceptance and normalcy. The bottom line is: every single child can benefit from friendship. In the short term, these friendships benefit the children involved; in the long term, they stand to impact the world by changing our view on ability. ESP is committed to showcasing the delight instead of the disability as we create a world that embraces kids of all abilities, one moment at a time. ABOUT THE AUTHOR: Laura Whitaker began as a volunteer at Extra Special People in 2003. With her passion for enhancing the lives of children with developmental disabilities and her specialized education in this field, Laura was selected as the Executive Director in 2006. As Executive Director, Laura uses her leadership and management strengths to manage staff, oversee year-round programs and summer camps and raise millions of dollars for the organization. Her favorite part of the job is getting to hug the many children who walk through the ESP doors. For more information, visit Extra Special People at http://extraspecialpeople.com
ep-magazine.com | EP Magazine • December 2018 7
ACHIEVE GREATER INDEPENDENCE WITH ABILITIES EXPO! Discover cutting edge products, the latest resources and fun activities for the disability community
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Explore your possibilities! People with disabilities, caregivers and healthcare professionals will experience: • Leading technologies • Life-enhancing products • Illuminating workshops • Daily living aids • Adaptive sports • Inclusive dance • Assistance animals • Art for all abilities • Essentials for seniors • Family-friendly fun From leading devices to expert advice to the opportunity to network with others in the community, Abilities Expo has everything you need, all under one roof!
UPCOMING EVENTS Los Angeles Feb 22-24, 2019 April 5-7, 2019 Toronto May 3-5, 2019 NY Metro June 21-23, 2019 Chicago August 2-4, 2019 Houston September 13-15, 2019 Boston
The event for the disability community
www.abilities.com/expos Register online today to bridge the gap between ability and disability. Come for the ep-magazine.com products,|stay for•the fun! EP Magazine December 2018 8
NEW PR DUCTS
ROCKING BOWL The Rocking Bowl is adaptive equipment designed for children with balance disabilities to work on gross motor development. Offers vestibular balance, control and stimulation. Can fit two children for a
variety of games and exercises. Bowl can be filled with balls or plush toys. Made of clear blue ABS plastic; not made with natural rubber latex. Weight capacity 120 pounds. Measures 24 inches x 15 inches. ENABLEMART 865 Muirfield Drive Hanover Park, IL 60133 Phone: 888-640-1999 Fax: 800-235-1305 Web: www.enablemart.com Email: [email protected]
Mini Stilts are designed for children ages 3 and up, with balance disabilities, to walk on. They are designed to motivate younger children into being physically active and to build motor skills. The hard rubber handles provide a good grip that can be adapted to the height of the child. Depending on how brave the child is, they can adjust the height of the stilts using the loose plateaus. On the Mini Stilts, children can easily and safely mount or remove the plateaus. The Mini Stilts are made of nylon, the sole and handle is made of artificial rubber, and the plateaus is made of plastic. Measure 28 x 11 x 8 inches and weighs 8 pounds. Weight capacity is 220 pounds. ESPECIAL NEEDS 1850 Borman Court St. Louis, MO 63146 Phone: 877-664-4565 Fax: 800-664-4534 Web: www.especialneeds.com
TALKING COLOR IDENTIFIER The Color Teller Talking Color Identifier is a device designed to help individuals with low vision, color vision impairment, or blindness identify colors. The Color Teller Talking Color Identifier helps to match clothes, identify colors in gardens and homes, access color-coded products, and
more. Accurately and consistently determines colors and shades, announces all the common colors, plus many tints and shades like pink, pale blue-green, dark brown and vivid yellow. It is also able to tell whether a light is on or off. It powers on and off automatically; has three volume levels; and supports three languages: English, French and Spanish. Measures 6 inches long, and weighs 3 ounces.
ENABLEMART 865 Muirfield Drive Hanover Park, IL 60133 Phone: 888-640-1999 Fax: 800-235-1305 Web: www.enablemart.com Email: [email protected]
ABLEDATA The ABLEDATA database of assistive technology and rehabilitation equipment contains information on more than 30,000 products for persons of all ages who have a physical, cognitive, or sensory disability. Products are chosen for these pages by the ABLEDATA staff based on their specific applicability to or design for children who have disabilities. ABLEDATA, operated by New Editions Consulting, Inc., is funded by the National Institute on Disability and Rehabilitation Research (NIDRR) under contract number ED-OSE-13-C-0064. For more information on these and other assistive devices, or to submit product information for the database (and possible inclusion on this page), contact: ABLEDATA, 103 W. Broad Street, Suite 400, Falls Church, VA 22046; phone: 1-800-227-0216; TTY – 703-992-8313; website: www.abledata.com; email: [email protected]
; twitter: https://twitter.com/AT_Info; Facebook: https://www.facebook.com/abledata. ep-magazine.com | EP Magazine • December 2018 9
NEW PR DUCTS
MAGNETIC CLOCK & TEACHING HANDS The Magnetic Clock & Teaching Hands is a wall-mounted clock designed for children with neurological disabilities to learn how to tell time. The Magnetic Clock with Teaching Hands includes over 50 magnetic pieces to customize a program for a student’s specific needs, whether at home or in the classroom. Learning to tell time is broken down into manageable lessons as follows: Number to Number Matching with Hour Numerals; Number to Number Matching with Minute Numerals; Filling in the Missing Numbers with Hour Numerals; Filling in the Missing Numbers with Minute Numerals; Reading the Hour and Minute Numerals with the Teaching Hands; Filling in the color-coded "Time Is:"; Reading the Hour and Minute Numerals with the colorcoded arrow hands and checking answers with the teaching hands; and Reading the Hour and Minute Numerals with the black clock hands. This systematic, interactive approach makes time-telling basics fun to learn and build upon, from becoming familiar with hours and minutes to understanding more abstract concepts like quar-
E-Z SEE PLAYING CARDS The Braille Preschool Puzzle is designed for individuals who are blind or have low vision. Each of the puzzles in the Preschool Puzzles set are made of solid wood, handpainted, and polished. The Braille puzzle assists the user with readiness, tactile discrimination, and putting things back together. Each piece has its name Brailled on it, so children know not only what it is, but which way to fit it into the board. The wooden boards are rectangular or square and can be used for individual or largegroup play. The E-Z See Playing Cards are designed for individuals who are blind or who have low vision. These poker-sized cards feature big 1-1/4 inch numbers which are easily read by users with low vision. The cards feature high-contrast white letters on dark red backgrounds for hearts and diamonds, and black back10 December 2018 • EP Magazine | ep-magazine.com
ter and half hours. This kit breaks telling time down into manageable parts so students with learning disabilities will be able to feel successful every step of the way. The Magnetic Clock's adaptability and handson design make it usable for an entire classroom or a single student. Handle with adult supervision for the child. ESPECIAL NEEDS 1850 Borman Court St. Louis, MO 63146 Phone: 877-664-4565 Fax: 800-664-4534 Web: www.especialneeds.com
grounds for clubs and spades. The cards feature a code for quick suit recognition. . FUTURE AIDS 33222 Lynn Avenue Abbotsford, BC V2S 1C9 Canada Phone: 800-987-1231 Fax: 800-985-1231 Web: www.braillebookstore.com
The CANDY 5 HD II Handheld Video Magnifier has a 5-inch high-definition LCD wide-screen designed for individuals with low vision. It features continuous zoom magnification from 2.5x – 22x, with an intuitive center-position HD autofocus camera. It can be used as either a handheld or stand magnifier. Its compact size makes it easy to take along on the go, and can be used at home, school, library, or elsewhere. Users can save up to 5 images so they are easy to find. The CANDY 5 HD II has an intuitive user interface with high-contrast and easy-to-locate buttons. The 3-position handle makes it a good ergonomic choice for left or right-handed users. MAXI-AIDS 42 Executive Boulevard Farmingdale, NY 11735 Phone: 800-522-6294 Fax: 631-752-0689 Web: www.maxiaids.com
ABLEDATA Over 40,000 assistive technology products in an easy-to-use database!
INTRODUCING THE ALL-NEW
WWW.EP-MAGAZINE.COM EXCEPTIONAL PARENT MAGAZINE
EP’s Innovative New Digital Strategy Exceptional Parent Magazine is proud to announce the launch of www.ep-magazine.com – our all new website which coincides with our expanding role as a leader in the field of special needs publishing and communications. www.ep-magazine.com now features a bold new design and intuitive site-wide navigation system with improved menu functionality that directs you to the information most relevant to you. It is also fully responsive with mobile devices, making it easy to navigate on a wide range of web browsers and portable devices. We’ve introduced a range of new content to the website, including In This Issue that highlights selected content from our latest issue, and
From Our Contributors, which features the most recent offerings from regulars such as Genetic Alliance and the AADMD. Our eNewsletter is the latest innovation in our digital strategy, enabling you to sign up for updates right on the homepage, and access the articles that matter to you each and every week. We also plan to continue adding more video content and product information to provide you with all of the resources you need to care and plan for your loved one with special needs. We’re really proud of the new website and feel it will create the experience you’re looking for when you pay us a visit. Check it out here: www.ep-magazine.com
ADVERTISERS: Reach a growing audience on EP’s all-new website and strategically target your consumers. Our competitive advertising rates offer top-quality results for an excellent value. Our team of designers and developers are ready to create digital marketing campaigns that effectively communicate your brand’s message to our dedicated online audience. CONTACT: Faye Simon at [email protected]
EP-MAGAZINE.COM: AN ALL-NEW DIGITAL HOME FOR THE SPECIAL NEEDS COMMUNITY
AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY
Surely There Are More Than About 155,000 Children Less Than 5 Years of Age with Disabilities in the U.S. BY H. BARRY WALDMAN, DDS, MPH, PHD, STEVEN P. PERLMAN, DDS, MSCD, DHL (HON) AND CHARLES D. LARSEN, DMD, MS ONLY 154,569 CHILDREN? The U.S. Census Bureau’s annual American Community Survey lists demographic findings for an extensive range of factors related to the civilian noninstitutionalized population; including the estimated number for 2016 (39.3 million residents) and the percent (12.5%) of the population with severe types of disabilities by age, gender, race and Hispanic origin.1 The estimated number of individuals with severe disabilities range from 56,630 Native Hawaiian and other Pacific Islanders alone, to 26,748,346 white alone, not Hispanic or Latino. The proportion with disabilities range from 6.9% for Asians alone to 16.6% for American Indian and Alaska Native alone. There is a progressive increase by age in the proportion of individuals with disabilities from 0.8% of the 19,865,233 for children less than five years of age (154,569 youngsters with disabilities) to 50% of the 18.8 million individuals of the 75 years and older (9.4 million with disabilities). In 2016, the proportion of youngsters less than 5 years with
disabilities in every state was 2.8% or less. The states with the highest percentages were Nevada (2.8%) and Rhode Island (2.1%). Forty states had percentages equal to or less than 1.0%.2 (See Figure 1) In 2016, the five states with the greatest number of youngsters less than 5 years with disabilities were: California - 18,595 Texas - 14,498 New York - 6,542 N. Carolina - 6,172 Florida - 6,149 3 But, while the American Community Survey report includes estimated data for six disability categories (hearing, vision, cognitive, ambulatory, self-care and independent living difficulties) for individuals five years and older, information for children less than five years is available for only hearing difficulties (103,920 very young children) and vision difficulties (91,697 very young children).
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. 12 December 2018 • EP Magazine | ep-magazine.com
dren with developmental disabilities in 2016 and North America Notes: 1. The estimated number of children less than five years of had the lowest.” 4 age with hearing or vision difficulties is recorded as one child in the two separate categories (103,920 + 91,697 = 195,617 very young Results from the Global Burden of Disease Study (GBD) indicatchildren) which is greater than the overall number of 154,569 chil- ed that in 2016, for the United States, there were an estimated dren with these two disability categories. The difference occurs as 809,661 children less than five years of age with disabilities and a result when a child with both disabilities is listed as one child with disabilities. Figure 1. People with Disabilities Ages Under 5 Years Living in the Community, 2. In part, the hesitancy to include data by State, 2016 for additional disability types may be related to the limited ability to properly diagnose conditions for youngsters at such an early age.
GLOBAL BURDEN OF DISEASE STUDY Actually, almost 810,000 children less than 5 years of age with disabilities were reported in the USA 4 “Globally, 52.9 million… or 8.4%... of children younger than 5 years (54% males) had developmental disabilities in 2016, compared with 53.9 million… in 1990. About 95% of these children lived in low-income and middle-income countries... Vision loss was the most prevalent disability, followed by hearing loss, intellectual disability, and autism spectrum disorder (emphasis added)… the prevalence of developmental disabilities among children younger than 5 years decreased in all countries (except in North America – emphasis added) between 1990 and 2016)…South Asia had the highest prevalence of chil-
0.0% to 0.5% 0.6% to 0.6% 0.7% to 0.8% 0.9% to 2.8%
4,117 children with disabilities per 100,000 population less than five years of age. “Early childhood… is the fastest period of growth and the period in which the developing brain is most sensitive to stimulation and nurturing. The period of development is regarded as the foundation for subsequent educational and vocational attainment at the individual level…Developmental disabilities are a group
NUMBERS COUNT: Does undercounting really matter? The estimated number of very young children with disabilities reported by Global Burden of Disease Study is more than five times the estimated number reported by the U.S. Census Bureau’s annual American Community Survey.
ep-magazine.com | EP Magazine • December 2018 13
of conditions resulting from impairments that affect a child’s physical, learning, or behavioral functions. Affected children typically have sensory impairment (hearing and vision loss, [are reported in the U.S. Census Bureau’s annual American Community Survey]). Epilepsy or seizures, cerebral palsy, attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), intellectual disability or other learning disorders (are not reported in the American Community Survey for children less than five years of age).” 4 The GBD study concept, first published in 1996, constitutes the most comprehensive and consistent set of estimates of death and illness. The World Health Organization now regularly develops GBD estimates at regional and global levels of a set of more than 135 causes of disease and injury. A GBD study aims to quantify the burden of premature mortality and disability and uses a summary measure of population health to combine estimates of the years of life lost and the years lived with disabilities.5
children less than five years of age, is the reality of the “Census Snafu. Nearly one in four (sic) children under the age of 5 in the U.S. lives in an area at risk of being missed by census employees in 2020, according to the Annie E. Casey Foundation’s annual Kids Count Data Book… (Due to) language barriers, high poverty level, distrust of government and households with mixed immigration statuses, make collecting accurate counts challenging for the Census Bureau. An inaccurate count means fewer federal dollars going to those states and a direct
ABOUT THE AUTHORS: H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. E-mail: [email protected]
Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine. Charles D. Larsen, DMD, MS is Assistant Professor; Director, Advanced Specialty Education in Pediatric Dentistry, Department of Orthodontics & Pediatric Dentistry at Stony Brook University, NY.
Figure 2. Share of Young Children At Risk of Being Undercounted in the 2020 Census
DOES THE REPEATED, PUBLISHED UNDER-COUNT OF THE NUMBER OF CHILDREN LESS THAN AGE FIVE WITH DISABILITIES REALLY MATTER? That is like asking whether it matters that hundreds of thousands (or more) of eligible residents do not vote in particular elections. Numbers do count, in terms of efforts to bring about change, and how to plan for the results of needed change. The estimated number of very young children with disabilities reported by Global Burden of Disease Study is more than five times the estimated number reported by the U.S. Census Bureau’s annual American Community Survey (809,661 vs. 154,569 very young children with disabilities). The introduction of these dramatic numbers can only increase the pressure for additional funds for services to reach more than three-quarters of a million very young children with disabilities. Surely, the widespread awareness of the magnitude of the numbers will generate increased incentives for needed training and service programs for the next generations of health practitioners to provide for these youngsters. P.S. Adding to the difficulties in accurately determining the full extent of children with varying types of disabilities among 14 December 2018 • EP Magazine | ep-magazine.com
blow to the quality of education and health care that state governments can provide.” 6 The share of children less than five years at risk of being undercounted in the 2020 census ranges as high as: 30% in California, 38% in Louisiana, 39% in Hawaii, 43% in New York, 47% in Alaska and 52% in New Mexico. (See Figure 2)6 So why not encourage the use of available disability data for very young children while recognizing that it is in a preliminary format. For example: in an earlier report (for 2002) the Census Bureau reported that, among: • “11.3 million children under 3 years, developmental delay and/or difficulty moving their arms or legs was found among 2 percent of children in this age group. • 11.6 million children age 3 to 5… 4 percent had one or both of the following conditions: a developmental delay or an activity limitation involving walking, running or playing.” 7 •
References 1. Census Bureau. Disability Characteristics 2012-2016 American Community Survey 5-year estimates. Available from: https//factfinder.census.gov/facers/tableservices/jsf/pages/productview.xhtml? pid=ACS_16_5YR_S1810&prodType=tablebleable Accessed September 1, 2018. 2. Kraus L, Lauer E, Coleman R, Houtenville A. (2018). 2017 Disability Statistics Annual Report. Durham, NH: University of New Hampshire. Available from: https://disabilitycompendium.org/sites/default/files/useruploads/2017_AnnualReport_2017_FINAL.pdf Accessed September 3, 2018. 3. Institute on Disability, University of New Hampshire. 2017 Annual Disability Statistics Supplement. Available at: https://disabilitycompendium.org/sites/default/files/useruploads/CompendiumSupplement_2017_Final.pdf Accessed September 4, 2018. 4. Global Research on Developmental Disabilities. Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990-2016; a systematic analysis for the Global Burden of Disease Study 2016. Available from: https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(18)30309-7/fulltext Access September 1, 2018. 5. Murray CJL, Lopez AD. Measuring the global burden of disease. New England Journal of Medicine, 2013; 369:448-457. 6. Donnelly G. Do you know where the children are? Fortune; 2018; September: 20 7. Census Bureau. American with disabilities in 2002. Available from: https://www.census.gov/population/popprofile/dynamic/Disability.pdf
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10 COVER STORY
Holiday Tips for families of CHildren wiTH speCial needs
(THE EPISCOPAL CENTER FOR CHILDREN)
The holidays can be fun, but they can add stress to the lives of children with special needs. The Episcopal Center for Children (ECC), a nonprofit organization serving children with special needs ages 5-14 in the greater Washington, DC area, offers the following tips to help.
TRULY TOGETHER: Holidays can be busy for grown-ups and children. Make sure you spend a few minutes of quality time with your child every day. Remember to give your child your full attention.
16 December 2018 • EP Magazine | ep-magazine.com
“Children with special needs enjoy the holidays but they are especially sensitive to the changes in routines that the holidays bring,” said dodd white, president and Ceo of eCC. “making a plan and adjusting your expectations can go a long way to creating a positive holiday experience for the entire family.” Tip 1: make a plan for THe Holidays and sHare iT wiTH your family.
Tip 3: for Holiday gaTHerings, give your CHild a job and a plan.
Create a schedule for your family’s holiday activities and post it for your child to see. You may find it helpful to use pictures to help a young child. Talk about the schedule with your child, so he or she can anticipate what will happen. It is also important to keep your expectations realistic. Kids who face behavior challenges or have trouble regulating emotions on normal days, still have challenges over the holidays. “But now your plans and expectations for the holiday are in play,” said Stefanie Nash, chief program officer at the Center. “The holidays engender a lot of excitement and fun, but it can also be overstimulating and compromising and overwhelming. When you are hoping for the best, you might experience more challenges, so you need to think about your plans through that lens.”
Ask your child to help collect coats, give out treats, or greet arrivals. Rehearse the plan. Give your child a schedule or plan for a festive occasion so he or she knows what to anticipate. If going to another place, bring along a favorite toy or quiet fidget. Involving your child in the holiday is great, but also notice where you need to draw boundaries. One particularly problematic area is how to handle other children who want to play with your child’s treasured holiday gift. “It can be hard to share when you just received something you really wanted. So you might need to draw some lines and say this is their special toy, they just got it for Christmas, and they might not be able to share it right now,” said Nash.
Tip 2: remind your family abouT Holiday plans.
There may be special activities for the holidays, but try to keep your child’s schedule as close to “normal” as possible. Structure is key. “Stick to their routine, which includes their medication regimen,” said Nash. She notes that can be tough, as some children take medicine in the evening before bedtime, and others take it in the morning. Both time periods are rife with disruptions during the holidays.
Review the schedule weekly. Discuss the schedule with others, so they understand what is going on and how they can best support your child with special needs, so everyone can have a fun holiday. It’s about giving anticipatory guidance, says Nash. “Being able to anticipate changes and talk about them in advance with children is so important. You are giving guidance to your child and predicting outcomes. So for example, if there are cousins coming over to your home for a visit during the holidays, explain to your child that they are coming and you might have to share your space or toys.”
Tip 4: mainTain rouTines as muCH as possible.
Tip 5: eaT HealTHy foods and Consider How new or speCial foods impaCT your CHild. During the holidays there are all sorts of fun foods and treats to enjoy. Some chil-
dren are more affected than others by dietary changes. Pay attention to your child’s moods and how diet and situational changes may be impacting him or her. If you are at an event, bring along food that is familiar to your child if you think it may be needed.
Tip 6: if your CHild is sensiTive To unfamiliar smells, Help manage THem. Talk in advance about smells that might be found in your home or someone else’s over the holidays. Cinnamon is a common holiday fragrance. You can add a little cinnamon to play compound to help a child experience this smell minimally (and gauge the reaction to it). You can also ask guests visiting your home to not wear heavy perfumes if your child is sensitive to them.
Tip 7: geT your CHild inTo THe spiriT of THe season THrougH gifT giving. Gift giving provides an opportunity to practice social skills. Making a gift can let your child express creativity and emotion. But don’t expect for younger children to do this on their own. Help your child make a gift for someone else, and practice how to give the gift to that person.
Tip 8: Take breaks wHen needed. Sometimes children need a break from the hubbub of holiday busyness. Fill a bag or backpack with a few favorite toys, games or activities. If you see your child is getting stressed, get out the bag and find a quiet spot to play. Parents and guardians can also play a key role in helping their child manage the over-stimulation that comes with the holidays. “If you know that your child can get overwhelmed, then re-think how the family dinner is set up. Does it have to be everyone eating at the same time at a big table in a loud room? Can it be smaller groups? Could you attend a gathering for a short time, then take a walk around the block to get some air?” said Nash. If you are going to someone else’s house, then talk to the host in advance so you understand the environment you are walking into. “Remind your child about coping ep-magazine.com | EP Magazine • December 2018 17
strategies and set the stage with other relatives so their expectations are not unrealistic. Children can’t always draw from what they know,” said Nash.
Tip 9: do noT allow presenTs To be a HindranCe To enjoymenT. Toy packaging today can frustrate children and parents alike. Children who have trouble with fine motor skills may find unwrapping some gifts frustrating. You can adjust packages to their comfort level by loosening ribbons and paper, or pre-cutting fasteners. Ask others who give your child gifts to be aware of his or her needs when it comes to wrapping them. Some children with special needs find it disorienting to unwrap things that are new and unfamiliar to them. If that is the case for your child, wrap a few favorite toys for your child to unwrap.
Tip 10: give your CHild THe gifT of your aTTenTion. Holidays can be busy for grown-ups and children. Make sure you spend a few minutes of quality time with your child every day. Remember to give your child your full attention. Practice active listening, where you listen to what your child is saying and then repeat it back to them to demonstrate that you were listening. For some children – those in foster families or those who have suffered a trauma or the death of a loved one – the holidays may not be joyous. For others, the holidays can stir up worries or anxiety. Give them permission to talk about it if they want to, and don’t avoid the difficult conversations. “I have found with some families it is on the minds of the children anyway, and they tend to follow the lead of the adult,” said Nash
speCial Tip: Teach mindfulness. Using color “zones” of regulation to talk about emotional tempo can help. At the Center, the staff use red, yellow, blue and green to talk about zones. “What we stress here is that you are not in trouble for your zone or mood, but it’s being attuned to how you are feeling,” said Nash. Red could mean angry or excited. Yellow could be a step down from red, perhaps you used a coping skill to bring your voice level down or to calm down your body movement from red. Blue could be “extra sleepy or not feeling well or sad.” Green is “I’m ready to learn and am feeling ok,” or “I’m flexible and adaptable and ready.” “When we have children acknowledge in a mindful way the zone they are in, it gives you a clue to use in responding to them,” said Nash. “By teaching kids to be in the moment about how they feeling, we can learn how to help them the best. I might say, is there something I can do to help? Are you comfortable with the zone you are in? It helps you know how to move forward or pull back with a child.” She also recommends adding other mindfulness practices, such as yoga, or breathing exercises.• ABOUT THE CONTRIBUTOR: The Episcopal Center for Children (Center) is a nonprofit, nondenominational school and treatment program for children contending with emotional challenges from the greater Washington, D.C. metropolitan area. Accredited by the Joint Commission, the Center serves children who are 5-14 years old in grades K-8. The goal of the Center’s treatment, therapeutic milieu, and individualized special education program is to empower each child to function productively within his or her family and community. Building on strengths within children, the Center partners with families in treatment and focuses on enabling its students to access and become their best possible selves. More information is available at eccofdc.org and on Twitter and Facebook @ECCofDC.
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Expect Change. 18 December 2018 • EP Magazine | ep-magazine.com
AdvocAcy Losing one voice to Find Another BY ELIZABETH COOLIDGE-STOLZ, MD
healing doesn’t bring back the past. it does something better ~ it opens a future. My parents’ memory was that I never wanted to become anything other than a doctor. I wanted to understand the human body, learn what was wrong, fix it, and help people. That plan seemed remarkable on track up to my 25th birthday. I sped through an elite 20 December 2018 • EP Magazine | ep-magazine.com
college in three years and then our state medical school, becoming the first graduate to land a residency in internal medicine at a prestigious Boston teaching hospital. The next step was to move to specialty training in cancer care. PHOTOS PROVIDED BY ELIZABETH COOLIDGE-STOLZ
PERSPECTIVE ON THE PAST: The author with husband Jeff at their anniversary luncheon; “I began working with the groups I knew best, those associated with brain injury and epilepsy, and polished my thoughts on patient advocacy, communication and education skills that could help patients and healthcare providers learn from each other, talk to each other, and form more effective, functional relationships that left all parties in better shape at the end of the day – and led to better outcomes for people and their families.”
ife brought something different. One day after a long night on call, I was the tour guide for my husband and his best friend, who was visiting Boston for the first time. At one point, we turned a corner where street crews had jackhammered up the paving. A car sped by close to us, kicked up one of those blocks of paving with rock embedded underneath, and sent it into the back of my head. The young doctor died that day, and a young woman with poor memory and a terrible headache was sent home to a dimly lit apartment to sit and wait because brain injuries heal in their own time. I did not know anything and I could not fix anything. When we went to appointments, doctors talked to my husband, over my head, as if they were vets and I were a pet. Yet, I began to learn differently. I listened to other patients in waiting rooms and outside testing areas. Gradually, I hesitantly began to give suggestions, that they might get more attention from their doctor if they brought a copy of the article they had read, rather than opening a conversation with “I read that…” Similarly, recording seizures, headaches, or side effects on a monthly calendar and bringing it to an appointment rather than saying “It is getting worse and worse. I can’t take it anymore” might be a more effective start to a discussion about symptoms and how to interpret and manage them. I, on the other hand, was passive for five years, going to the same mediocre general neurologist and listening to him say the same thing about the clusters of headaches that remained as other symptoms lessened, that head injuries heal in their own time. It was only when he finally said I should talk to my gynecologist because my headaches were most frequent before periods, that I got angry, and with anger, honest. I said I didn’t know what they were, but I knew they didn’t represent premenstrual syndrome, we were not getting anywhere any more, and I wanted a second opinion. The consulting neurologist, who had expertise with head injuries, diagnosed my post-traumatic epilepsy based on history alone. Both of us realized the first neurologist had never done a brain-wave test, which turned out to be abnormal, and diagnosis led to treatment and a return to life outside my apartment. I began working with the groups I knew best, those associated with brain injury and
epilepsy, and polished my thoughts on patient advocacy, communication and education skills that could help patients and healthcare providers learn from each other, talk to each other, and form more effective, functional relationships that left all parties in better shape at the end of the day – and led to better outcomes for people and their families. Sadly, my first public speaking engagements all led with the story of my accident and the tagline that I was not a smart patient. But if the listeners learned from my mistakes, they could become smart patients, effective learners and communicators who could become lifetime advocates for themselves and mentors for their children and friends. My husband and I entered what we thought would be the second chapter of our lives, with both of us working. I became involved in medical publishing as a content editor and volunteering as an educator and facilitator for advocacy efforts between specialists and patients.
developed workshop plans on selfadvocacy and thoughts on advocacy for other adults, such as parents (which included the reminder, if you are NOT the decision-marker, remember it is not your body, not your decision, and not yours to live with the consequences, so remember to back off and know your place as adviser and helper only). I also developed workshop plans for parents of children with complex medical needs (involve them from the beginning to the extent they are able to understand what is happening, through the time they can, and should begin to play a role in decisionmaking. And if the day comes, they can and should independently make their own decisions, bite your lip, cry in private, and let them go with the pride that a mother bird must feel when her offspring flies successfully for the first time away from her). What I did not know as I visited Disney World for what I thought would be my great personal accomplishment (being the opening speaker at the Epilepsy Foundation’s annual conference on issues affecting girls and women) was that my challenge and growth as person and advocate had just entered a new and complicated phase: our son, then a toddler, was nonverbal and showing other developmental difficulties. At the same time, I was developing new disep-magazine.com | EP Magazine • December 2018 21
abilities myself, and unsure how or whether to raise them with a neurologist. My son, Joseph, had arrived early, after a seemingly healthy pregnancy that had ended prematurely with eclampsia, an emergency Cesarean section, and hemorrhage. I was hospitalized for nearly a week and they allowed Joseph to stay because I was ill, but he had cleared the neonatal ICU in 24 hours. Indeed, because Joseph was there for so long in modern terms and seemed so healthy, we were asked if he could be a model newborn for a physician who needed to learn how to do a neonatal assessment as part of his specialty training. Of course we agreed. I watched the senior physician observe the younger man do the assessment and his facial expression never varied, but he paused before he decided how to tell me what the two found. In hindsight, I should have worried more about the pause. He said Joseph largely scored just as a newborn should, but he seemed to become agitated very easily and to self-soothe very poorly. I was told, gently, this was something my husband and I should watch when we were able to take him home. And we had, but we were two youngest children raising a first (and eventually only) child, away from our parents, and in a neighborhood with few other young children. Joseph hit his major developmental milestones on time. He never walked; he was running at 11 months. However, he didn’t point at things, seemed an inward little guy, and he didn’t start to talk. I asked the pediatrician about this when my boy reached 12 months. The pediatrician told me that first children, especially boys, start when they are ready. When Joseph was18 months, I insisted on him getting a hearing test, which turned out to be normal (ok, of course, it was, he could hum any tune perfectly.) It was only when Joseph was a little older than two years old, and I put him into a home-based day care for the first time (with a wonderful, experienced kind woman) that the shadows began to take shape and the dream of “boys do things in their own time” began to die, just like “head injuries heal in their own time.” My son had been in her home for two weeks when she sat me down gently when I came to pick him up. She hoped I could accept her honesty. Joseph was very bright, she said, picking up the routines of the house quickly. However, he made no effort to communicate with the other peers there, either by language, hand signals, or eye-toeye communication. Indeed, she said, there had been problems during playtime with chase games. The games would begin with fun, but Joseph was unable to read the other children’s cues when they were tired or wanted to quit, and his caregiver would have to intervene. Furthermore, she added, if he could speak, he would already be speaking. But it wasn’t that way. For example, she only knew when Joseph wanted more to drink at lunch because he threw the empty cup at her. As I began to apologize for his behavior, she took my arm and stopped me. She redirected me to explaining the nature of Early Intervention, the state-based services available for children under the age of 3 years, explained she had cared for some of the children of staff in the local unit, and she had already contacted them. Despite the fact we lived in the adjacent area, they were willing to come to her home to evaluate my son. And thus began the journey that proceeded to a home visit, more jargon, including “lack of symbolic play” (that I didn’t understand), 22 December 2018 • EP Magazine | ep-magazine.com
physicians and more physicians, tests and more tests, and then the diagnosis of pervasive developmental delay, followed over time by major mood disorder (bipolar disorder by the time he was 10), seizures, and now, at age 23, a list longer than I have fingers to count. The neonatal nurse who told me sagely, when Joseph was less than 48 hours old that he would be sunny and stubborn, was right. He is sunny and stubborn. His luminous smile is missing a tooth from a fall, and we long ago gave up on wanting fine sutures in his face from falls or other injuries and instead gave thanks to whomever invented skin glue. But Joseph is our son, the child so unmistakably mine one could never think we brought someone else’s baby home. As we moved through Joseph’s life in chapters, from physician to collective specialists, from early intervention to special education, from day programs to a residential school, to adult services and a group home, we learned much. I learned much, with gratitude to the families who walked those paths LIKE FATHER: Joseph and his father, dressed identically, at his school before me, sharing tales conclusion ceremony in June 2017. I wouldn’t have believed about proofing homes so aggressive children with no sense could not find a kitchen knife and hurt someone (in reality, while pretending it was a light saber, and then melting down when told to put it away). Because of Joseph, I became aware of an entirely new area of need for advocacy for people with disabilities, ranging from intellectual and developmental disabilities, to people with acquired disability like my brain injury, or stroke, or dementia, or mental illness. I became aware that people with a disability affecting communication, cognition, mood, or behavior are twice as likely to be hurt or killed in an incident with law enforcement as an able person of the same demographic background. Our collective experience both creates the need for more voices and creates more voices. I am thankful for the opportunity to be one of the voices that may help us all move forward, whether we are in the position of helping others needing help, or doing both at the same time.• ABOUT THE AUTHOR: Elizabeth Coolidge-Stolz, MD received her BA from Bryn Mawr College and her MD degree from the Pennsylvania State University College of Medicine. Four months into her internship at a Harvard-affiliated teaching hospital, an accident with traumatic brain injury ended the crafted life plan and led to the path not planned—chronic injury, and then finding the voice of a patient advocate. When her son arrived, with sunny temper, autism, bipolar disorder, epilepsy, and other medical challenges, this led to the author’s growth as a disability advocate and a believer that few people maintain good health throughout life, but everyone can find wellness, the balance of ability and disability (or limitation) that allows us to open ourselves to unexpected possibility. On Facebook @healingwoman
INNOVATION AT NEW HEIGHTS
ABOUT THE AUTHOR:
As a special educator, Angela Shaw endeavors to maintain a responsive and proactive approach toward problem solving through the 3 C’s of: communication, collaboration and creative thinking to provide students learning that will grow for a lifetime. Her publishing voice synthesizes her diverse education and experience relative to special
Public safety, government and commercial applications throughout the world
education topics and families. Most recent articles published within EP Magazine include topics about decreasing stress & anxiety, supporting collaborative efforts and understanding dyslexia. Shaw earned Masters’ degrees from Azusa Pacific University in Special Education and School Counseling.
References Center for Parent Information and Resources (9/16/17). [Retrieved: 6/29/2018 from http://www.parentcenterhub.org/manifestation]. Manifestation Determination. Newark, NJ
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T H E E P H O L I D AY I S S U E
Direct Support Professionals for Special Needs Families During the Holidays BY JOHN RAFFAELE, MSW
here are joyful elements to the holiday season as well as stress- nicating with parents, family and friends, and they understand the ful aspects for anyone celebrating this season. People who amount and type of support the person they are working with have family members or children with disabilities often see the needs for each event. A talented direct support professional proholiday season with a unique set of lenses. Holiday parties and vides incentive or motivation for involvement in their communities events can be filled with memory-making excitement. They can and at family events. They assist the individual they support as also easily slip into negative territory and sometimes even turn into needed in getting to know and interact with the people that are disaster. When family members rely on the services of direct sup- most important to them. If direct support professionals are performing these tasks and port professionals, there can often be more positive outcomes and skills well, it will allow family memjoyful memories than negative ones. bers to know that their child or famiCompetent direct support profes- GOOD CHEER: DSPs are critically ly member will likely have good holisionals (DSPs) can wonderfully assist important to successful holiday day memories. Too often exceptional people with disabilities in navigating engagement between people with disabilities, their parents and family members face holthe loud, busy and often unpredictable families and the idays with stress and anxiety, wanting holiday events, and the many people in their only the best for their family. With the moments of revelry during the season communities. of lights. Interactions with lots more people than usual is common during this season. Depending on the nature of a loved one’s intellectual or physical disability, this may create high levels of stress for them and subsequently the family. Ultimately, to those families that entrust their loved ones with skilled direct support professionals they can be confident that a good time will be more than likely. Holiday time is people time. The holsupport and assistance of skilled proidays offer the opportunity to meet fessionals there can be peace and joy new people and create new relationin the season of lights, and family ships, as well as to provide opportunimembers can rest easy and focus on ties to reconnect with old friends and the spirit of the holiday—which is to family in celebration of these relationreflect on the relationships and ships. Direct support professionals friendships that make our human life have very specific skills associated so precious. with helping those they support in The National Alliance for Direct building and maintaining relationships. Connecting these skills to the things that take place in and Support Professional encourages all direct support professionals around the holiday season, they are critically important to success- to utilize the NADSP Code of Ethics and the NADSP Competency ful holiday engagement between people with disabilities, their fam- areas as the standard for exceptional performance in the support ilies and the people in their communities. The competent direct of people with disabilities. The Board and Staff at the National support professional assists the individual as needed in planning Alliance for Direct Support Professionals wish all a safe and joyfor activities and events (e.g., making reservation, support needs, ous holiday season.• money, materials, accessibility). He/she assists the individual in arranging transportation, when necessary, to visit family or friends ABOUT THE AUTHOR: and attend holiday events. They encourage and assist the individual John Raffaele MSW, is Director of Educational Services, National Alliance for as needed in facilitating friendships and peer interactions, commu- Direct Support Professionals, based in Albany, NY. Visit www.nadsp.org
Too often exceptional parents face holidays with stress & anxiety, wanting only the best for their family.
ep-magazine.com | EP Magazine • December 2018 25
BY KIMBERLEE RUTAN MCCAFFERTY 26 December 2018 • EP Magazine | ep-magazine.com
PHOTO PROVIDED BY KIMBERLEE RUTAN MCCAFFERTY
It was a simple question, asked at a party of people I hadn’t seen in years. “What grade is Justin in now?” was the query, but the truth is I had to stop and think about it because they don’t really do grades at his private autism school. “He’s in ninth,” I replied, and we moved on to talking about our other kids and people we had in common. Soon a friend of my friend captured her attention, and I was left for a moment alone, with chicken on a stick, some good pinot grigio, and my thoughts. Ninth grade. High school. My boy is in high school. ne would think that realization would have occurred to me in August, not September, after he’d already been back in school several weeks. But honestly, the end of August/ beginning of September is such a blur I’d only been able to retain one kid’s grade (5th, so proud of myself), and hadn’t really given much thought to such a momentous leap on my eldest’s part. As I savored my poultry and looked around the room, the enormity of his age, his maturity (and mine), hit me. If he wasn’t severely autistic, in three years he’d be going to college at a decent age, like all the children of everyone else in this room who had their progeny. I won’t lie to you, this realization hit me like a ton of bricks. Since my other child is younger than Justin, I haven’t yet been a high school or college mom, so I’ve only watched vicariously as my nieces and nephews and friends’ kids have gone off to the big time. I’ve hugged the parents of those children, reassured them that they are fully “cooked” and will do fine. I’ve consoled them when empty nest syndrome ruled the day. I’ve listened to their fears and concerns (will one ever sleep, will one party his tuition away), and have reinforced my feelings that their kids will be okay, they’ve been given the tools to move on to their (more or less) independent lives. An independent life. That was the brass ring for me for Justin’s hoped-for progress when he was diagnosed at seventeen months, a decade-and-a-half ago, and it’s been the hardest thing for me to relinquish in my dreams for him. Don’t get me wrong. Sometimes I’m sad that he’ll never go to the prom, attend college, have a career, or get his license too (okay, maybe not so much that one). I will probably mourn these things my entire life, not because I want to relive these events through him, but because I know they would have brought him pleasure. I have read articles over the years chastising parents for feeling this way, and to that I literally say “phooey.” These events are precursors to finding love, learning skills, and the holy grail, independence. It’s okay to be sad sometimes. But the truth is my sadness is tempered by the fact he will never know what these things are, and won’t miss what he doesn’t know. My boy revels in routine, in having his mom greet him when he
gets off the bus, in making him his expensive pretzels, and singing him the same three songs he’s listened to since babyhood. He’s happy, gloriously so. And trust me, having a severely autistic teenager in the house who’s predominantly happy is the holy grail too. I’ve learned to shelve my fears over his future, both so I can function and because I choose to enjoy my present life, which despite the challenges of raising an autistic child is pretty great. I don’t want to miss a moment. He is joyous, and safe. He loves his life. And for that, I am eternally grateful. eing a caregiver to a disabled person is rewarding, and challenging, fulfilling and grueling all at once. My husband and I don’t know if we’ll be doing this full-time for twenty-five years or fifty. We struggle with determining what we think will be best with Justin, all the while knowing we may not have many different options for his lifetime care. I struggle also with figuring out what’s best for me—I seesaw between a need to regain my own independence and keeping him with us until the last possible second. I’m not sure what’s best for us. More important, I’m not sure what’s best for him. I’m hoping the decision becomes crystal clear for me down the road, revealing our best option like a good series finale that answers those questions you’ve been carrying about for seven seasons. I don’t yet know what I’ll decide. But I do know this. My youngest, who is mildly autistic, has a great shot at college, a career, a wife, and a life away from his mom and dad. Will I miss him when he goes? Absolutely. Will I revel in the fact that he can leave? Absolutely too. Will I forever mourn and simultaneously just deal with the fact that Justin will always need help to make it through the day? Yup, that too. Our decisions are not clear cut. Our feelings don’t have to be black and white. I’m pretty sure for a good long time, I’ll be dwelling in shades of gray.•
ABOUT THE AUTHOR: Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog at autismmommytherapist.wordpress.com. Kim’s book Raising Autism: Surviving the Early Years is on sale on Amazon here.
ep-magazine.com | EP Magazine • December 2018 27
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Community AlternAtives to out-of-Home PlACement for CHildren witH ComPlex needs CONTRIBUTED BY SPAN
Children who live with complex medical needs are often highly dependent on intensive and expensive interventions and equipment. Historically, like many other states, New Jersey relied on institutional care for children with such complex needs. However, it is generally accepted that children’s social, psychological, emotional and developmental needs are best met at home.
urther, children and families want to be together, not separated. With technology and other developments in care for children with complex medical conditions, it is becoming increasingly possible to support them in their homes and communities. The SPAN Parent Advocacy Network (SPAN) strongly supports this current movement towards community-based supports and services for children with complex needs. In addition to the desire of children and families to be together, there are other reasons to eliminate – or at least significantly limit – institutionalization of children with complex needs, including the provisions of the Americans with Disabilities Act (ADA) and the US Supreme Court decision in Olmstead, and the potential for exposure to infectious diseases. EXCEPTIONAL PARENT | EP Magazine • December 2017 29
AmeriCAns witH disAbilities ACt The ADA states that “goods, services, facilities, privileges, advantages, and accommodations shall be afforded to an individual with a disability in the most integrated setting appropriate to the needs of the individual.” In the 1999 Olmstead vs. LC decision, the US Supreme Court rules that states must offer a community living option to anyone with a disability if (a) the individual is able to live in the community with appropriate services and supports, (b) the individual wants to live in the community, and (c) the state can provide community living with reasonable modifications, taking into account its resources and the services being provided to other individuals with disabilities. For children, the situation is more complicated. Parents or guardians are expected to care for their dependent minor children, whether or not they have disabilities or special healthcare needs, and as such, dependent minor children are evaluated in the context of their family situation. Unlike anyone over the age of majority, minor children are not fundamentally eligible for community services based solely on their disability. Instead, their family income is included in their eligibility evaluation, and many children are excluded from services because their families make too much money. Social Security Administration Law, however, does require that states extend The SPAN Parent Advocacy Network is Medicaid eligibility and committed to empowering families as associated services to advocates and partners in improving children who reside in education, health, and mental health institutions, including outcomes for infants, toddlers, children hospitals, on a long- and youth. SPAN offers families, term basis. This is professionals, policy makers and our parent center colleagues information, because children residresources, support and advocacy ing in institutions are assistance addressing: effective parent evaluated using institu- involvement, child care, general and tional deeming rules, special education, dropout and bullying while children living at prevention, child welfare, health care, home are evaluated mental health, youth leadership, using community transition to adult life, incarcerated deeming rules. This youth, military family support, violence institutional bias prevention and more. means that states are required by federal law to pay for a child’s care in an institution, but do not have to pay for it in a home or community- based setting. In order to address this issue, virtually all states, including New Jersey, have Medicaid waivers, TEFRA programs, or similar other programs that offer benefits and services to children with disabilities who do not qualify because their families make too much money. (See Medicaid, below)
risk of infeCtious diseAse Congregate institutional care can lead to rapid spread of bacterial infections such as the adenovirus outbreak that occurred in October-November 2018 at the Wanaque Center for Nursing and Rehabilitation. At the Wanaque Center, 29 children became ill as a result of the outbreak, and 10 children died. In congregate institutional care, it is difficult to control the spread of infectious diseases. 30 December 2018 • EP Magazine | ep-magazine.com
suPPorting CHildren witH ComPlex needs At Home And in tHe Community Medicaid is the most common support for children with complex needs. Home and Community Based Services (HCBS) can provide long-term care supports and services, including private duty nursing, attendant care, and assistive technology, to help families keep their child at home. It also offers non-emergency medical transportation to appointments and case management to help the family coordinate medical, social, and other services. Families can find out about Medicaid and waiver eligibility by contacting the Special Child Health Services Case Management Unit in their county found at www.nj.gov/health/fhs/specialneeds/contacts.shtml. Even if a child’s “family of origin” cannot care for their child with complex needs at home, there are other options besides institutional care. For example, in “Care Options for Children and Adolescents with Disabilities and Medical Complexity,” the American Academy of Pediatrics noted that, “When families believe they cannot care for their child in their home, other noncongregate family-based options may be possible. These may include host families, shared care arrangements, and voluntary foster care.”* Host families could include “kinship” care (care provided by a relative). SPAN agrees with the AAP Council on Children with Disabilities, on which SPAN serves in New Jersey, that “all children, including those with complex medical conditions and technology dependencies, ideally are cared for in their own homes and with their families whenever possible,” but also recognizes that there may be limited situations where out-of-home placement for children with complex conditions is at least temporarily needed, but such placement should always be a last resort and used only when home or community living is “not a safe or sustainable option.”* Unfortunately, some families may place their child with complex needs in an institutional setting because they are not aware of other options. Families can work with their Case Manager at their county Special Child Health Services Case Management Unit to explore their options and get the care management and other services they need to survive and thrive at home, in the community. To find out more about what children with medical complexity and their families need – and deserve! – read the Briefing Paper from the Lucille Packard Foundation for Children’s Health at www.lpfch.org/publication/what-children-medical-complexity-their-families-and-healthcareproviders-deserve-ideal
IN-HOME AND COMMUNITY CARE RESOURCES Families should feel free to contact Family Voices/ Family-to-Family Health Information Center at (800) 654-SPAN for more information and support.
Family Voices/ Family-to-Family HealtH inFormation centers http://familyvoices.org
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FAMILY &COMMUNITY A PARENT’S PERSPECTIVE EFFECTIVENESS OF HOME AND COMMUNITY-BASED SERVICES PLAN INTRODUCTION: Several years ago, the Federal government issued what is now known as The Settings Rule (CMS, Home and CommunityBased Services Plan). This compulsory initiative was designed to curtail "facility" based programs (sheltered workshops, campus-based programs) and transfer them to “community” - based programs. While most families agreed that the intention was appropriate (end isolation and encourage more community inclusion) many families felt it was not in the best interests of their children. They argued that their children preferred the more familiar settings, were happy being with their friends, coworkers and safe surroundings. Despite the core value of the Settings Rule being “person centered,”
many families felt that the new ruling negated, ignored or neglected true “choice.” Many felt intimidated, manipulated and overpowered. This article reflects the view of a parent who feels that the Settings Rule is a step backward and argues for its reconsideration. While Exceptional Parent (EP) magazine has historically not printed any articles that did not identify the author, I felt compelled to honor the wishes of this parent. The fact that the parent did not want to be identified is significant it that it reflects the fear of intimidation on behalf of many parents and families. We offer it to EP readers with no judgment or bias and would welcome articles that oppose this viewpoint. – Rick Rader, M.D., EP Editor in chief
t has been about three years since the implementation of the Federal Settings Rule for Home and Community-Based Services serving people with intellectual disabilities. As a parent of a child with intellectually disabilities within the U.S, I have seen and felt the results of mandated changes in community services in action. In addition, I have also talked to parents and individuals who are living with the results of the Settings Rule every day. I have read the federal document, as well as the State interpretation of this document, and it flows and reads like a masterpiece. I’m not sure that Thomas Jefferson could have done a better job. Words like choice, dignity, person-centered, independence, flexibility and integration are embedded throughout its pages. These are powerful words that paint an impressive picture of what it takes for the disabled individual to grow, be happy and function successfully in the community. Although I believe the plan was written with good intention, I do not believe that it is effectively working (depending upon how each State interprets this rule) for the majority of people with intellectual disabilities across our county. I assess the success of the plan based on 4 questions: 1. Does it work for the individual and their family? 2. Is it safe to all involved? 3. Does it provide real choice (is it a true reflection of person-centered thinking)? 4. Is the individual happier once the implantation of the plan is complete?
but employment within the community. ✓ No it doesn’t work- for others, there is a forced process of placing people into circumstances which offer little chances of success. To paraphrase the plan, it directs the individual to, “Go into the community learn, grow and succeed, and may the force be with you”. Unfortunately it doesn’t work like that. Author statesman Horace Greeley is famous for his decree, “GO west young man!” That idea worked well for a few seeking fame and fortune in the American Wild West in the late 1880s. Many however failed and many died and many were met with despair, hopelessness and tragedy out on that trail west. I share that with you because to paraphrase the Settings Rule and certain interpretations by various State officials, it basically says, “GO to the streets! and you will grow and achieve success.” I am sure the plan was written with good intention. But writing a plan and executing a plan is totally different. Larry Bossidy, author of the great business book, Execution, nailed it when he wrote, “Without the ability to execute, the breakthrough thinking breaks down, the learning adds no value, people don’t achieve goals and the revolution stops dead in its tracks. What you get is a change for the worst because failure drains energy from the organization.” In this case, the Settings Rule sounds like fun and it sounds exciting and sounds challenging, but the reality is it cannot be a “one size fits all” solution to the needs of people with significant cognitive and physical disabilities. Many of my child’s friends have a myriad of complex conditions and challenges (e.g., non-ambulatory, sensory impaired, behavioral challenges, seizure disorders and neuromuscular conditions). Asking these individuals to “Go to the streets,” and effectively and successfully interact within the community five days a week, six hours a day, is not achievable. It is obvious that the settings rule as interpreted by many States, failed to recognize that limited resources, coupled with a fictitious and erroneous person-entered approach, would only leave people stranded.
QUESTION 1: Does it work for the individual and their family? Yes and No! ✓ Yes it works - for a small population of individuals who function at a relatively high level and who possess the requisite skills to work in the community, the rule can prove beneficial. In certain cases, it has provided employment, a true identity and clearly financial gain. However, many of the people who benefited from the transition should have never been guided away from anything 32 December 2018 • EP Magazine | ep-magazine.com
It doesn’t work for many people with intellectual disabilities because: • It’s impractical! It takes twice as many employees to support the individuals and often it equates to zero paying jobs. • It’s expensive! Going into the community means more people, more transportation, isolation from friends and adaptive equipment being placed at every location throughout the community. • It defies logic to require that every person participate in a plan that a State or Federal bureaucrat have mandated. The bureaucrat’s response to a reluctance to operationalize the mandate, is that the provider is not creative enough.
QUESTION 2: Is it safe for all those involved? As parents of adult children, we share common concerns that often translate into safety issues /liability issues. This includes wellintended people out in the community. Concerns/Issues • Toleration of community (crowds, traffic) • Elopement into traffic, waterways, and balconies • Safety awareness (aware of dangerous situations) • High turnover rate of support staff (physical demands, limited pay) • Activities often depend on the weather (Too cold, too hot, windy, rainy) • Attention to tasks (Mistakes can have very negative results) • Lack of equipment (lifts, changing tables, positioning assists) in the community
• I can’t afford movies and activities so who pays for volunteers helping with the group? • Do the people who write these rules, live them? • Why must we move around in the community all day? It’s exhausting! • My son earned a monthly pay check of $200.00 at a Sheltered Workshop. The monthly pay check that he earned was important. That couple hundred dollars helped out and it gave him a feeling of achievement and self-worth. Why is it gone? • What is the growth benefit of walking in the mall every day?
QUESTION 4: Is it person-centered/ client driven? One size does not fit all. That goes for both shoes and people. In the book The Element, Sir Ken Robinson defines that “we are at our best and our high point of achievement when our natural talent and abilities intersect with our personal passion. That point of achievement is different for every person. It is especially unique and different for people with significant disabilities. It’s also a whole lot more challenging. And so, with differences being so obvious, why does the Settings Rule and the interpretation by some States demand that every person wear the same size shoe? Person-centered should mean providing for uniqueness.
“WHY DOES THE SETTINGS RULE AND THE INTERPRETATION BY SOME STATES DEMAND THAT EVERY PERSON WEAR THE SAME SIZE SHOE?”
QUESTION 3: Does it provide choice? When the only outcome is involvement in the community, choices and options are obviously diminished. Whereas person-centered planning was designed to identify, extract, and honor personal choice. However, the reality of how many States have implemented the Settings Rule is a monolithic system which forces people to be active in fully-inclusive community settings, with little to no consideration of what the persons wants or needs. Individuals and their families ask:
he MISSION of the Settings Rule is to maximize opportunities for people and to have access to the benefits of community living in the most integrated setting. With the goal being to maximize opportunities and to provide the most person-centered services to the individual, I cannot understand why services designed exclusively for people with disabilities are not considered integrative services. As a parent of an adult with a special needs child, I would hope that every State finds a way to provide comprehensive answers that really work for people with significant disabilities. That means finding a way to use both facility-based services and non-facility based services blended together. These comments are just a concerned parent’s perspective. Those of us with adult special needs children need help. Thank you! •
ep-magazine.com | EP Magazine • December 2018 33
IN THE END, DARIUS MCCOLLUM WAS POOR AND BLACK BY MICHAEL JOHN CARLEY 34 December 2018 • EP Magazine | ep-magazine.com
“Darius didn’t present like me, but I knew that if you took away the experiences of being stabbed repeatedly with large scissors when he was in second grade, the horrific prison rapes and beatings, the lifelong trauma, the brilliance… and that if you then took away my educational opportunities, and blatant white privilege… he was my mirror.” n this past October 5th, Darius McCollum, the autism world’s previously-unending sideshow, was sentenced to life inside a New York State psychiatric facility.1 No, he was not relegated back to Rikers island, or any other “normal” prison, as had been the case for the majority of his adult life. He was this time sent to the kind of place where our most dangerous, disturbed, and marginalized individuals are secretly warehoused 2 to endure horror after horror 3 without witness, until the unmarked, mass grave on Hart Island 4 prematurely, and slowly consumes their trauma-ridden, dissociated selves. Darius’ remarkable story of rotating in and out of the prison system for 38 years came to a halt on the worst side of the turnstile. Autism-Schmautism: He is black and poor. We were fools to think this story would end in a restorative manner. He almost made it. His brilliance, and the subsequent media coverage had all but ensured that he would not slip through the cracks like other poor, spectrum or nonspectrum African-Americans. Darius had a shot because he was noticed. But the final nail came, comic/tragically, from an African-American judge; one who justified ending Darius’ life because Asperger’s Syndrome, to her, is a “dangerous, mental disorder.” 5 In the words of Darius’ lawyer, Sally Butler, “The sweetest guy in the world, never committed any violent acts, never hurt anyone, is going to be held in a hospital with
OUTRAGE: Darius’ final nail came from an judge who justified ending his life because, to her, Asperger’s Syndrome is a “dangerous mental disorder.”
people who slaughter people.” Judge Ruth Shillingford hasn’t yet apologized, saying something along the lines of “Ok. Maybe I could have used a better choice of words.” But she will. Too many of us have this same “dangerous, mental disorder.” The success rate on appeals is very low. He’s gone. arius McCollum, as most spectrumfolk know, couldn’t stop stealing subway trains and taking them on joyrides. His first arrest came when he was 15, and over close to the next four decades, he was caught and sentenced over 30 times. But by his estimation, he was not caught thousands of times. Like innumerable spectrum children, young Darius had a “thing” for trains. As a fellow spectrumite myself who works in the field, I’ve long thought it funny how the clinical world overthought our too common fascination with rail travel. The simple truth of why we love trains has not to do with the trains themselves… it’s the track. We don’t have to make any decisions about going left here, or right there, thanks to the track. We don’t have to read between the lines, or interpret a thing, as we would driving a car. The track has already determined our destination and our route. Furthermore, we have full control over the speed of the journey. For folks like us? That’s heaven. How was this possible, though? How could one man, however Houdini-like, sneak into the driver’s seat so easily, time after time after time? Amidst our modern paranoia of mostly imagined terrorist threats looming around every corner, how
PHOTOS PROVIDED BY MICHAEL JOHN CARLEY COURTESY GEMINI PICTURES
did Darius manage so easily to take over the controls while we were the passengers? Well, Darius was brilliant. He not only knew the ins and outs of the New York Metropolitan Transit Authority (MTA) ten times better than any MTA employee, he knew the employee timetables, and how the MTA’s Human Resource department operated. He knew the trends, and the procedures, and he was also gregarious. Darius McCollum really is the sweetest guy you’ll ever meet. So when he’d arrive on the scene in a stolen uniform, and tell the scheduled driver “I just got a free day, man. Lemme help you out.” The uninformed, overworked and underpaid MTA employee usually said, “thanks, man,” and laid back on a welcomed break. No passenger, it should be noted, was ever hurt when Darius was driving. Not one passenger was even aware that, driving their subway train or bus was someone other than a trained MTA employee. Lastly, Darius’ routes were always finished on time. More than two decades would transpire thereafter that first arrest before we’d hear his name. For us, it all started with a Harper’s article from 2002—Jeff Tietz’s The Boy Who Loved Transit.6 In the opening paragraphs, Tietz introduced us not only to a train thief, but also a brilliant forger, who brought letters to crews “signed” by MTA managers, dictating that the crews allow “Mr. McCollum” to inspect their safety protocols. Tietz also showed us a concerned outsider, who always attended MTA workers’ union meetings and rallies. Finally, Tietz pointed out to us that Darius only attempted to steal these trains, buses, and equipment. After all, he returned everything he stole. Darius’ behavior originated not in contempt. He loved the MTA, and all its inner worlds. But despite a diagnosis of Asperger’s syndrome, one that should have explained his lack of criminal intent, he got idiot judge after idiot judge7 – monsters of an unfair, impotent, racist, and arcane criminal justice system in New York. To them, Darius was too intelligent, too polite, and too “white sounding” (as one judge put it) to both have a disability and not have control over his actions. I first met Darius around that time. He was out on parole but at high risk for going back. People put high hopes that my new organization, GRASP, could help. GRASP ep-magazine.com | EP Magazine • December 2018 35
was the first real peer-run (i.e. run by people on the spectrum) organization in the autism world, and later grew to become the largest membership organization in the world for adults on the spectrum. That all said, we didn’t have much of a budget, and we weren’t a services organization – we had no contract with the city. The type of help that Darius needed wasn’t complicated, but it was intensive. He needed talk therapy with a shrink that really knew their Asperger’s, peer support, perhaps some Cognitive Behavioral Therapy, some trauma-based therapy, a gym, and a Microsoft Excel class. He came to one GRASP support group meeting, but given his relative stardom, he had a hard time feeling like a part of the group. So he hung out in our office with me on several occasions. I’d work while he’d read. We’d talk. We’d go for walks. We got to know each other.
explained to them how the social world works, their loneliness intensified until they became a suicide statistic. You can’t dumb this stuff down. We’re complicated. I hadn’t yet seen anyone whose level of “juice” resembled mine – more functional than most in many capacities, I present well. But I was also inundated with spectrumites who were/are way smarter than I. So while better than most at hiding my cluelessness, until then I had always felt somewhere in the middle of the spectrum, with no real parallel. Darius McCollum was the first and only time I’ve ever sensed someone whose spectrum gifts and challenges instinctively reflected mine. Four months apart in age, diagnosed at virtually the same age, both only children, our internal makeup seemed identical. Darius didn’t present like me, but I knew that if you took away the experi-
when the relationship was never equal; for in addition to both our racial instincts, I was to be the mentor, and he the mentee. y this time, everyone was writing about him. Whether it was the New York Times, the London Times, or every news station. By 2004 Darius had racked up an impressive media portfolio. There would be a play,8 and a documentary 9 – interpretations of Darius’ life made by people that were not out to exploit him – Good people were always on his side. There was talk of a movie starring Julia Roberts… However, my main mission with him was contrary. I wanted to try and get him to stop seeing dollar signs from imagined film deals, to stop being addicted to the media attention. In my opinion, this was his real challenge. For in addition to withstanding the tempta-
DERAILED: (Left) Darius with schoolmates in happier days, and (right) being taken into custody one of 30 times over four decades. Not only did he know the employee timetables and the Human Resource department ten times better than any MTA employee, he was also gregarious. veryone on the spectrum is different. On one end you might have someone non-verbal, who may never experience a reciprocated sexual relationship, or hold down a steady job for long. But this same individual could in fact be quite happy if surrounded by the right supports and attitudes; as measuring happiness by the capacity for speech is one of the infantile mistakes we used to make in the autism world. Why so stupid? Because on the other end of the spectrum you might have someone very verbal; maybe with an IQ of 180 – we have all these famous people diagnosed in retrospect such as Einstein, Beethoven, Edison, Jefferson, Emily Dickinson, every famous mathematician – whom everyone expects to be the CEO of a Fortune 500 company someday. But because no one
36 December 2018 • EP Magazine | ep-magazine.com
ences of being stabbed repeatedly with large scissors when he was in second grade, the horrific prison rapes and beatings, the lifelong trauma, the brilliance… and that if you then took away my educational opportunities, and blatant white privilege… he was my mirror. People thought I was talented – more talented than I really was – and so I got scholarships that allowed me to divide whatever intelligence I had into many different directions, thus creating a more wellrounded individual… than Darius, who had real intelligence that few wished to recognize, and who, in lacking those opportunities, directed everything he had to trains. I ended up with an Ivy League Masters degree. Darius didn’t graduate high school. We may have gotten close – It felt that way; the ease was both inexplicable and beatifically jarring. But I’m not sure. It’s hard to tell
tion to steal more trains came the devaluation of what he would do with his life if he wasn’t stealing trains. It’s difficult enough for ANY ex-inmate to get excited about trying to start a new life… when you’re a convicted felon (very few jobs hire folks with prison records) with no job training, money, or education. Being black just decreases your chances even more. I began running interference to try to de-celebrity his life a little. And just so you know, of course he would have been a perfect hire for the MTA. But they wouldn’t have him. We tried. We tried the MTA, we tried the MTA’s transit museum (where Darius could be a tour guide), we tried the transit authorities of other cities, we tried Amtrak… But Darius, in his “career,” had shamed these folks. He had shown that their security procedures were a joke, thus pissing off Homeland Security
and driving their insurance rates through the roof. Later, the MTA would rebuff our criticisms and escalate the divide even further by demanding re-payment on any possible movie deals. In addition to Darius pinning them down, MTA officials dug themselves a deeper hole 10 by reacting like the petty, insecure bureaucrats they might have always been. (Speaking of Homeland Security: Darius, in his infinite kindness, had even welcomed a visit from them during one of his jail stints, asking nothing in return. And they, after absorbing much information and consultation that Darius was more than happy to give them, free of charge, about how easy it was to skirt the MTA’s procedures… gave him nothing in return. Again, we are discussing the sweetest, most childlike, least streetwise guy in the world. Today, he is still proud of that meeting as he feels he served his country.) By then, many media outlets were calling me to reach Darius (who struggled to maintain a consistent phone number), and I was trying to rebuff them. That time would be Darius’ longest stint outside prison. And when he fell off the wagon per se, he did so repeatedly thereafter. Over the ensuing years he would get out and almost instantly get caught taking another car or bus for a joyride. In the absence of access to real supports when he would be out, being a celebrated train thief was the only life he could see. He might not have been wrong. During those years he also made bad decisions, about people, money, and especially legal representation. Stephen C. Jackson, the celebrity lawyer who gained fame during the Tawana Brawley case, rushed to Darius’ side and filled him with promises of millions. But when Jackson (now deceased) quickly saw that the fame he sought wasn’t forthcoming, he then abandoned Darius without officially dropping his name as Darius’ representative. What this meant was that when Darius, on more than one occasion, would show up from his cell for sentencing or a hearing, that he sat alone in court. The judge would ask where his lawyer was, and Darius could provide no explanation. But because Darius, in the court’s mind, couldn’t represent himself (because of his Asperger’s, the courts deemed him incapable of the decision to switch lawyers), he was then sent back to jail for months, even years once, until a new hearing could be rescheduled. Herein, my power of attorney was worthless.
GRASP didn’t have the means to help, but some larger organizations could have. However, none of them would touch Darius McCollum with a ten-foot pole. The excuse was that they didn’t like the way Darius was using his Asperger’s… as an excuse, and that this made everyone on the spectrum look irresponsible. But to me, this was the excuse – to not have to acknowledge the punishments not fitting the crimes. If people really thought Darius deserved to be raped and beaten for taking subway trains on safe joyrides… I just couldn’t believe that. But I grew to believe that as a poor, black man, Darius for them was a lose-lose proposition. My prison visits felt more and more like spankings. I’d arrive, furious with him over the most recent arrest, and I’d lay into him. But at the end of the visit we would have worked it out. I once broke policy, and facilitated an interview with him for Caren Zucker and John Donvan’s book, In a Different Key (I trusted Caren, whom I knew from her days at Nightline when she produced some really fine autism coverage). I laughed in solidarity at the finished book, where they quoted my first words to Darius when I brought them to Rikers… in which I distinctively used an expletive. Donvan had inquired after the visit why I was so harsh with him, and rather than explain that neither Darius nor I came from finishing school, or that this was just the way we showed we cared, I answered in an acknowledgement that maybe it was wrong of me, but that “I visit him.” For at the time, no one else really was. But then Sally Butler 11 became Darius’ (seriously) pro bono lawyer. And he finally had a real chance… because he finally had a real hero. orget the nightmare center that Darius will go to (Kirby,12 or Mid-Island,13 according to an old colleague), our regular prisons are increasing in violence. Author Shane Bauer went undercover for Mother Jones as a $9 per hour Louisiana prison guard (an experience he recounts in his new book, American Prison) and took away a wealth of terrifying information. In a recent interview,14 Bauer stated that when he was being trained, he was instructed that the proper procedure for when prisoners were stabbing each other, was “to yell, ‘Stop fighting!’ and that’s it. We should not get in between them. We are not going to pay you
(the guard) that much… if those fools want to cut each other, then happy cutting.” And does anyone still think that you can go through long prison experiences without being raped? Are some people still capable of such denial? Unfortunately, yes. We are that naïve, or dumb, or complacent. The proof of our societal need to never eliminate rape lies in our prison system. “According to the Bureau of Justice Statistics, around 80,000 women and men a year are sexually abused in American correctional facilities. That number is almost certainly subject to underreporting, through shame or a victim’s fear of retaliation... To tackle the problem, Congress passed the Prison Rape Elimination Act, signed into law by President George W. Bush in 2003. The way to eliminate sexual assault, lawmakers determined, was to make Department of Justice funding for correctional facilities conditional on states’ adoption of zero-tolerance policies toward sexual abuse of inmates… But only two states – New Hampshire and New Jersey – have fully complied with the act… The Justice Department estimates that the total bill to society for prison rape and sexual abuse is as high as $51.9 billion per year, including the costs of victims’ compensation and increased recidivism. If states refuse to implement the law when the fiscal benefit is so obvious, something larger is at stake… Compliance does not even cost that much. The Justice Department (also) estimates that full nationwide compliance would cost $468.5 million per year.” — “Why We Let Prison Rape Go On”15 Bozelko, Chandra. The New York Times. April 17, 2015 his past year, after 38 years of in and out, it was time to roll the dice. Darius’ health had been deteriorating – he has gained tremendous weight and is experiencing rapid hearing loss. His brilliance has become less accessible, having slowly drowned in accumulated trauma. In January, Sally scored a major victory:16 she got the Brooklyn District Attorney’s Office to finally admit that Darius was not a criminal. But because of how the court still contextualizes non-apparent disabilities, Darius, in order to become relatively free, would have to plead not responsible by
ep-magazine.com | EP Magazine • December 2018 37
And then there’s Judge Shillingford, picmental defect. And there was a big risk herein. As Sally wrote: “If Darius is deter- tured on Google images at many NAACP mined to be dangerous, he will be confined in functions, who simply may have seen a a truly horrific locked facility for the crimi- Darius we never saw; one who didn’t have nally insane perhaps for life.” But if the judge the intelligence we knew of, or the indiswere to determine that he was not danger- putably kind nature. Maybe she saw a perous, he would be “civilly committed for son who was incapable of a productive life intense treatment with the goal of returning given the right supports… because of his skin color. Maybe she knew better. to society with services available to him.” Having raised white children in predomiIn talks at the time with the Puerto Rican government on an autism consulting con- nantly black, Brooklyn neighborhoods, I tract, I began looking into a side project of can confess to you that every once in a building a treatment center on the island, while, a fellow white would let slip their one that would use Darius as a pilot for low- belief that we were throwing our kids’ saferisk, non-violent offenders with diagnosed non-apparent disabilities. Everyone’s been saying “there’s no proper care available,” even though what Darius needs is not brain surgery, and since no one else was doing it… I dreamt of him taking that Excel class, going to trauma-based therapies, and helping to repair houses in Puerto Rico’s still-reeling infrastructure, one with no transit system – Yes! There would be an ocean between Darius and temptation, if not also a warm, loving populace that would welcome him. The courts would save a ton of taxpayer money and stop enduring the bad public relations. Sally forewarned that getting the powers that be to allow him to receive his treatment outside state SLOWLY DIMMING: Darius’ health is deteriorating. lines would be the challenge, but I was He has gained weight and is experiencing rapid hearing loss. His brilliance has become less confident. It seemed a no-brainer. I wasn’t alone. We all figured the odds accessible, having slowly drowned in were good. Who in God’s name would accumulated trauma. sentence this good-natured child to more torture? But again, Sally and I being white, we forgot that Darius was black. ’m guessing that at best, only 3% of the people that read this article will be African-American. It’s not that I don’t have black readers. As a white writer, I’m confident I have more than most. But for African-Americans, I would imagine that this material, like any material about Darius, reads like the box score of a game African-Americans already saw, participated in from start to finish, and in which their team got its ass kicked. There’s nothing to be learned, and only more heartache to be gained from reading. Maybe as some “militants” might say, everything really is about race. Maybe everything isn’t about Darius’ autism, nor fiscal variations (I especially have professed in the past that everything revolves around economics).
38 December 2018 • EP Magazine | ep-magazine.com
sciously made us face our capacity for cowardice and inaction. For I could cry at will, in gratitude, for the fact that I was raised on this one notion: If in the course of your job, you have to turn a blind eye to a giant injustice? Then it is time to look for another job. These days, this concept feels more than lost. Judge Shillingford stated in her sentencing that her “hands (were) tied.” Bull. I know I’m angry. And in my anger, I erroneously feel it’s my duty to look upon her, and maybe Gonzalez, as garbage human beings. But I think the real duty for us all is to acknowledge that they are not alone.• Author’s Note: All photos are stills from the documentary, Off the Rails, and are used by written permission. The author also wishes to thank the autism communities of Argentina, who cheered him up immediately after having to write this article. ABOUT THE AUTHOR: Michael John Carley is the Founder of GRASP, a School Consultant, and the author of Asperger’s From the Inside-Out (Penguin/Perigee 2008), Unemployed on the Autism Spectrum, (Jessica Kingsley Publishers 2016), the upcoming Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum…and Beyond!, and the column, “Autism Without Fear,” which for four years ran with the Huffington Post and will soon be transferred to Sinkhole at https://sinkholemag.com/ For more information on Michael John, or to subscribe to his updates, you can go to www.michaeljohncarley.com
References ty under a bus to prove our liberalness. The truth was the opposite – because of the trust we’d extended by living there my boys were protected by those communities. The black on black shit is what will astound you. Whether you are African-American, Spanish, on the spectrum, LGBTQ, or Muslim… any minority will always feel doubt about their way of doing things, even if that way is brilliant. And any majority will have supreme confidence in their way of doing things, even if their way is so dumb it’s beyond repair. Unless we are all educated otherwise, I believe that’s simply how majorities and minorities think. I can’t compartmentalize Darius McCollum as the screwup twin brother who couldn’t stop breaking my heart, or as the African-American who only had a chance in our dreams. Darius will perhaps best be categorized as the human being who con-
1. https://www.ny1.com/nyc/all-boroughs/transit/2018/10/05/transit-obsessed-queens-man-will-not-be-released-back-into-community 2. https://blog.timesunion.com/capitol/archives/235775/psychhospital-attendants-cite-dangers-including-riots/ 3. https://www.nytimes.com/2014/11/11/opinion/where-hell-isother-patients.html 4. https://www.dailymail.co.uk/news/article-4977742/The-islandmass-burial-site-New-York-city-dead.html 5. https://www.nbcnewyork.com/news/local/Judge-RulesNotorious-NYC-Transit-Thief-Dangerously-Mentally-Ill-CommittedLock-Down-Facility-New-York-City-495276021.html 6. https://harpers.org/archive/2002/05/the-boy-who-loved-transit/ 7. https://www.nytimes.com/2001/03/30/nyregion/judge-clearlynot-amused-sentences-a-subway-impostor.html 8. https://www.scotsman.com/lifestyle/boy-steals-train-my-arm1-658383 9. http://www.offtherailsmovie.com/ 10. https://www.nytimes.com/2016/03/22/nyregion/mta-seeksbus-and-train-thiefs-profits-from-potential-movie-deal.html 11. https://www.freedariusnow.com/hislawyer/ 12. http://america.aljazeera.com/articles/2015/7/27/ny-mentallyill-get-lost-in-the-justice-system.html 13. https://nypost.com/2003/02/23/insane-work-conditionsguards-for-mentally-ill-criminals-left-helpless/ 14. https://player.fm/series/the-book-review-1785564/kate-atkinson-on-transcription 15. https://www.nytimes.com/2015/04/18/opinion/why-we-letprison-rape-go-on.html 16. https://nypost.com/2018/01/08/transit-bandit-agrees-to-pleadeal-will-head-to-psych-ward/
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“People with intellectual disability are disadvantaged in so many areas and so many of the health problems that beset them can be easily fixed. Along with a good life in the community and a good education, good health is the absolute right of a person with intellectual disability.”
Helen Beange _ Has Left Her Mark BY SETH KELLER, MD
Today, individuals with Intellectual and Developmental Disability (IDD) are considered as people with rights who should be included in all aspects of personal, social and health conversations.
ut this was certainly not at all true a mere several decades ago. In particular, healthcare for those with IDD has not at all caught up with many of the positive cultural and social advances to this population over time. Helen Beange was quite aware of this huge disparity well before anyone gave it a thought and she decided to make a difference. When asked about her start into medicine, Helen says that “nothing about my life has been planned, including medicine. When, to my surprise, I obtained one of the rare scholarships then available to the University of Sydney, I asked my father what I should do. ‘Medicine,’ he said, ‘that’s a good career for a woman.’” In the early 1950’s Helen served as a Junior Resident Medical Officer at Royal Alexandra Hospital for Children, as well as a number of locums as a general practitioner in NSW and South Australia. She married a naval aviator and had six children, removing her from the medical profession for 13 years and moved to Perth. With a later return to Sydney, Helen’s desire to get back into healthcare never waned and with a strong public health sense and desire to care for those with great needs, she began to work at Grosvenor Diagnostic Centre in assessing children with intellectual disability. Helen further honed her skills in assessing and caring for those with IDD throughout the late 60’s and the 70’s as a medical officer and community physician.During this time period social norms were improving for those with IDD, yet health disparities remained greatly unaddressed, however, Helen wrote articles on Cri-Du-Chat syndrome as well as Prader Willi syndrome, all greatly adding to the knowledge about these individuals who have unique challenges. Helen became involved in the deinstitutionalization program in 40 December 2018 • EP Magazine | ep-magazine.com
NSW and began to appreciate the importance that exercise and wellness could do for people with disabilities. Helen predicted that with the closure of these hospitals and the subsequent dispersal of the health professionals, the support of the health of people with IDD who were being moved into the community would be at risk. Her views were exacerbated when the responsibility for the support of people with IDD was moved from the Department of Health to the Department of Community Services. Helen maintained a strong commitment to overall public health and she decided to build upon this by returning to postgraduate education. She obtained a Master degree and then later, a Fellowship in Public Health at Sydney University. Helen was instrumental in creating a strong awareness of the importance of health and health promotion through a number of articles. Some of her early papers are still being quoted extensively in the literature. Healthcare was not at all considered to be a priority for those with IDD during this time period, and yet Helen was leading the way. She also wanted to ensure that education to healthcare providers was being delivered and she especially wanted to make sure that doctors would appreciate that the lives of those with IDD mattered and deserved care. Helen partnered with a growing number of other concerned colleagues and she continued to publish with an added eye to epidemiology and research, two areas which had not been previously investigated to any great degree. Realizing that data helps to drive future care practices and support, Helen was awarded a Research and Development Grant from the Commonwealth Department of Community Services and Health for the first population study of health disorders in people with intellectual disability. This particular study demonstrated that a significant number of medical disorders often are not detected initially unless a further detailed assessment is performed. Helen “retired” in 1992 and, unlike most people who take a step back in their professional life, retirement was not to be for her. Helen became a visiting Medical officer at the Stockton Centre, a large NSW institution for people with intellectual disability. Helen recruited her colleague Lyn Stewart, an expert in nutrition she had
worked with previously. They recognized that individuals at their institution were unfortunately severely malnourished. They implemented an enriched diet with an increased caloric density program for 12 months, which then demonstrated a significant improvement in a number of health measures. As a result of this work, there is now a policy of screening the nutritional and swallowing status of all people with intellectual disability in residential care in NSW. A continued focus for Helen and her colleagues was demonstrating that health disparities were highly prevalent in those with intellectual disability. Coming up with a solution and an implementation of policy measures to rectify these inadequacies would lead to a greater appreciation and desire to expand these efforts across Australia and the world. Helen, together with other doctors and health professionals in Australia, led to the development of the Australian Group for the Scientific Study of Mental Deficiency (AGSSOMD; now the Australasian Society for Intellectual Disability, ASID) – which followed the inauguration of the International Association for the Scientific Study of Mental Deficiency, (IASSMD, now IASSIDD) in 1964. In the late 1990s, Helen Beange and Helen Evenhuis from The Netherlands became the foundation co-Chairs of the IASSIDD Special Interest Research Group on the Physical Health of people with ID, which is one of the most active research groups in the Association. Helen cofounded the Australian Association of Developmental Disability Medicine (AADDM) alongside her colleague Nick Lennox, and she cofounded the Health Special Interest Research Group (SIRG) within the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSID), two organizations dedicated to improving the health of people with ID. Trevor Paramenter knew Helen quite well, when he assumed the position of Chair of Developmental Disability and Director of the Centre for Developmental Disabilities (CDDS) in the Sydney Medical School in 1997, which was largely funded by the Department of Community Services. There was no provision for a health clinic, despite the agreement specifying that a medical doctor was to be one of the Centre's first appointments. Helen who had retired, volunteered to run a part-time clinic in association with CDDS where she saw patients from across the State of NSW, with minimal support from NSW Health Department. Upon her appointment to CDDS, Seeta Durvasula and other doctors worked with Helen in the clinic. This has grown into two clinics, both of which are now supported by NSW Health Department. The current Clinic Director at CDDS, Seeta Durvasula, has praised Helen for her leadership and for her being instrumental in helping the clinics grow into two clinics, both of which are now supported by the NSW Health Department.
PHOTO PROVIDED BY SETH KELLER, MD
Helen is a pioneer in the field of intellectual disability medicine in Australia, she is an excellent clinician with great clinical acumen, especially in the detection of genetic and dysmorphic syndromes in adults. She was always respectful to and communicated well with people with intellectual disability in her consultations. Helen is passionate about people with intellectual disability having good health and access to quality health services. Helen is a strong believer in preventive health and, in particular, the vital role of a healthy diet and regular physical activity in keeping people with intellectual disability healthy. Helen has been recognized for her work and dedication. She has received numerous awards and has been asked to present at countless meetings and events. She has received the Certificate of Appreciation from the Western Sydney Disability Service, a Lifetime Achievement Award from the Down Syndrome Association of NSW in 1992, and in 2004 was appointed as a Member in the General Division of the Order of Australia. In 2013 Helen received the Award for Social Welfare and Impact by Santa Sophia College as an alumna. Helen was honored in 2016 with the inaugural Honorary Life Membership by AADDM President Jacqueline Small. Thank you, Helen, for being a leader with the vision, the will, the guts to stand up to the status quo and create much-needed change for those who, all too often, don’t have a voice. You have left a legacy in the field of IDD healthcare that will forever leave an indelible mark within the community of healthcare providers, as well as the many individuals with ID, their families, their supports – and the many organizations who support their care in Australia and across the world.
elen’s own words speak for themselves as a testament to her spirit in an interview published in Interaction. In 2011, Helen expressed her frustration at the plight of disabled people not receiving treatment for easily preventable conditions when she said: “This causes moral outrage in me as it should in others. People with intellectual disability are disadvantaged in so many areas and so many of the health problems that beset them can be easily fixed. Along with a good life in the community and a good education, good health is the absolute right of a person with intellectual disability.”•
ABOUT THE AUTHOR: Seth M. Keller, MD is Co-Chair, National Task Group on Intellectual Disabilities and Dementia Practices; Chair, Special Interest Group Adult IDD, American Academy of Neurology; Past President, American Academy of Developmental Medicine and Dentistry.
ep-magazine.com | EP Magazine • December 2018 41
StreSS BuSterS for KidS BY CAROL L. RICKARD, LCSW
too much STRESS builds up… #1) It comes spilling out and leaves a BIG MESS. Have you ever: Said mean things or things you wished you hadn’t said, yelled, got in a fight, broke things, or got in trouble? #2) It STAYS IN and ends up ruining your health. Have you ever: Felt anxiety, can’t sleep, gotten headaches, ate too much or not at all, felt sad & depressed, couldn’t concentrate, or worried a lot? Do any of the following things STRESS you out? Going to school, being bullied, homework, family members, rules to follow, friends, being around people, disagreements, teachers, getting sick, parents, tests, running late or waking up late. Important news: A situation that causes one person stress may not cause you stress! Everyone is different! Can you think PART ONE: NOW YOU SEE IT! of other things that are stressing you out? Imagine this… I hand you a big bottle of root What do you think will happen if you beer and ask you to shake it up – A LOT! Maybe plugged the drain of a tub, turned the you even drop it on the floor… So, what do you water on and then walked away? think will happen to the bottle of root beer? Eventually… it would OVERFLOW, right? You’re right! The PRESSURE builds up inside! Title: stress Busters for Kids: How to Once it did – there’s be a HUGE MESS! And once the pressure gets built up It stays Get control of stress, anxiety, and Does this make sense? A tub can only there… It won’t go away on its own. The fact is Worry! hold so much! Two important points: the PRESSURE doesn’t go anywhere until we Author: carol l rickard Point #1 - Once the level starts to rise – It so something to let it out! will keep rising until it is shut off. Point #2 And, it’s not good to have too much PRES- Paperback: 78 pages Publisher: Well yoUniversity - The tub ONLY has so much room - It can SURE build up inside the bottle. only hold so much then it’s OVERFLOW! Two things can happen… #1) It comes Publications Publication Date: september 2018 Some people think the solution is to just SPILLING OUT & leaves a big mess. #2) It STAYS ISBN-13: 978-1947745117 turn OFF the water. You’ll see later why In and ends up ruining the root beer. It’s best to Available at amazon.com and this won’t work! When it comes to avoid both! barnesandnoble.com STRESS… People are just like a tub: 1) People are just like the bottle… Things haponce you wake up – your STRESS level starts to rise & it will keep pen in life that shake a person up. And…just like the pressure rising until it is… shut off. 2) You only have so much room - You built up inside the bottle, STRESS builds up inside people! And can only hold so much STRESS until you will be at OVERFLOW! once the STRESS gets built up – it stays there. It won’t go away on So, I hope you can see how STRESS creates problems. And how its own. In fact, the STRESS doesn’t go anywhere until we do it won’t go away until we… release it! Now that you can “see it” – something to let it out! (We’ll talk about this in Part 2). Way #1 as a shook up bottle of root beer, Way # 2 as a tub filled And just like the bottle, it’s not good for too much STRESS to to overflow – it’s time to learn how to “release it’! build up inside of people! Here’s what happens to people when
A contractor CAN’T build anything without “tools”! A fireman CAN’T put out a fire without “tools”! A person CAN’T get control of stress without “tools”! This book is to make sure YOU get the “tools” needed to get control of STRESS. There are two parts to this book: Part 1: Now You See It! And Part 2: Now You Don’t! Together they give you all you need to be a Stress Buster!
42 December 2018 • EP Magazine | ep-magazine.com
IMAGE COURTESY CAROL L. RICKARD
PART TWO: NOW YOU DON’T! This is where almost everyone gets it wrong! Because you’re reading this… you’ll know the secret to success! What you are about to learn is my DO60 System. It doesn’t take a lot of time! It will work for everyone! And, it can be used everywhere! There are two steps to my DO60 System. Step 1 – STOP the level from rising. Step 2 – RELEASE so the level will drop. Important: each step must be done in order… Step 1 then Step 2. Each step must be done for 60 seconds. Just so this makes sense… In order to STOP the level form rising, you must do something that is calming for you! Calming = activities that require NO energy or muscles be used! I’m afraid I have a little bit of bad news: you can only use your cell phone for
HOW TO RELEASE – STEP 1 On the following pages are a bunch of “tools”. Each one is good to use for Step 1- STOP things from rising. There are four keys to success: Key #1 is to try out each one (even if you don’t think it will work for you!). Key #2 is to do 60 seconds ((if you can go longer – do it! 30 secs. is better than none). Key #3 is to keep a list (write down tools that end up working best for you). And the last key, #4 is to have more than one tool (don’t set yourself up to fail - the more tools the better!) Remember, you must do Step 1 before you do Step 2. Otherwise, the system won’t work for you. It could even make things MORE stressful. Tool #1: Read: Grab one of your favorite books! Either a real version or the Kindle version – either way you are reading! Comic books can be a great read too! Tool #2: Music: Listen to one of your favorite songs or artists. Set up a playlist of the songs beforehand then you have them ready to go when you need them. Tool #3: Breathe: 1) Count your breaths. There a couple ways to do this. You can track the number you do in 60 seconds. 2) Set a specific number of breaths to do like 12, 15, or 20. Belly breathing is best! This gets lots of oxygen in to our brains. Oxygen is kryptonite to stress! 2) Do Square Breathing. This is a specific way of breathing & here’s how to do it: 1) Breathe in & count to 4 in your head (1,2,3,4) 2) Hold it & count to 4 in your head (1,2,3,4) 3) Breathe out & count to 4 in your head (1,2,3,4) 4) Hold it & count to 4 in your head (1,2,3,4) 5) Repeat! Tool #4: Take a Time Out: Remove yourself from the situation. Create space between YOU and the situation or person. Either go outside or in to another room.
this first step! Cell phones do not require enough energy or muscles to be used for Step 2. Now, in order to do something to RELEASE and drop the level, you must do something you like that is active! Active = activities that DO require energy and muscles be used. So let’s apply this to our stress bottle… Step 1 – STOP the pressure from building up! Step 2 – RELEASE the pressure that’s been built up inside! Each step must be done in order and each step must be done for 60 seconds. **Otherwise the system won’t work** And applied to our stress tub…Step 1 – STOP the level from continuing to rise! Step 2 – RELEASE the level that’s been raised already. This is where most people get it wrong! They only turn it off. They don’t do Step 2 and release!
Tool # 5: Mind Push Ups!: Here’s how to do them: 1. Find a quiet spot to lie down. 2. Set a timer for 60 secs. (or more!) 3. Put a book on your belly. 4. As you breathe in, make your belly & the book rise up! 5. Breathe out like your blowing candles. 6. Repeat breathes until timer goes off! Tool # 6: The Serenity Prayer: 1) The Real One: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” 2) Carol’s “In the Moment Serenity Tool: ”Ask yourself the following question: “Can I do anything about it RIGHT NOW?” If yes, DO IT! If no, LET IT GO! Here are a few more tools for Step 1 – STOP: 1. Watch Guided Imagery on YouTube 2. Count to 10 s l o w l y ! 3. Watch a favorite show or movie 4. Blow bubbles 5. Lie down & look at the sky 6. Picture a STOP sign in your mind 7. Make a “Calm Jar” - Google It! • ABOUT THE AUTHOR: Award-winning author and speaker Carol Rickard, LCSW has written over a dozen books and spoken nationally on stress and wellness. She’s appeared as a guest on the Dr. Oz Show, been a featured expert in several publications including The Good Life, Readers Digest, and Esperanza Magazine. She also created and hosts The WELL YOU Show, a nationally syndicated wellness show, on Princeton Community TV.
ep-magazine.com | EP Magazine • December 2018 43
Po ering Through
To reAch Your Full PoTenTiAl BY STEPHANIE CORKETT
Nell Coonen-Korte, a 36-year-old Special Olympics athlete from Minnesota, knows a lot about reaching her full potential. Nell didn’t live an active lifestyle and had tried to work with trainers for years to get healthier. “For me, it's been a journey. I wasn’t active until I was 23, because growing up I was considered a liability risk and couldn’t work out at gyms. Special Olympics was the first time I did anything active,” explained Nell.
fter years of struggling to lose weight, Nell, a receptionist at the Special Olympics Minnesota office, met Ben Swarts, a new employee at Special Olympics Minnesota. Ben had worked with people with disabilities before starting at Special Olympics and noticed the lack of physical health and fit44 December 2018 • EP Magazine | ep-magazine.com
ness in that population. Along with fellow Special Olympics coworker Hillary Tyler, Ben put in motion the beginning of a health program that would be inclusive for people of all abilities. “Through years of trial and error, the SOfit program, a flexible, holistic, unified, equitable wellness program for people of all abilities was created. It was a great team effort and was certainly not done by one person alone; it was a consistent, focused effort by many people over the long haul!” said Ben. SOfit offers a unified approach to improving and protecting health and wellness for people with and without intellectual disabilities. SOfit offers participants a comprehensive, 360-degree look at wellness and the human spirit. Together, Special Olympics athletes and Unified partners are empowered to challenge and change the way they look at diet, daily exercise, and lifestyle choices. Nell’s health journey began when she accepted an offer to work with Ben as her personal trainer and start the SOfit program. “Through SOfit and my partnership with Ben, I have learned how to lose weight the healthy way and how to keep it off,” said Nell.
PHOTOS PROVIDED BY STEPHANIE CORKETT/SPECIAL OLYMPICS
LIFTING SPIRITS: (Opposite page) Ben and Nell after a workout. (Above, clockwise from left) Chatting during a training session; Posing during a trip to Washington, DC for the Special Olympics Health Messenger Training; Exchanging high fives after a power lifting event; and getting ready for Halloween. “Ben taught me how to be disciplined and because of the success I have had, it has made me want to help others with intellectual disabilities (ID) to live a healthy lifestyle the right way.” Ben and Nell have met at least once a week since 2013. With Ben’s encouragement and training, Nell has become an accomplished powerlifter. Nell’s personal best deadlift is 195 pounds and best bench press is 120 pounds. Nell has won many gold medals at Special Olympics competitions. Through Nell’s hard work, she has lost 185 pounds and has a new look on life. “I took baby steps on my health journey and tried not to do everything at once. Ben helped me build healthy habits that has led me to building sustainable change in my life,” said Nell. After Nell’s successful weight loss, she was trained to be a Special Olympics Health Messenger, an athlete who advocates for the health of people with ID. “I have always wanted to help make a change, I want to help athletes to not have to have experience what I have when it comes to receiving good healthcare, and also living a healthier lifestyle,” explained Nell. Nell, in her position as a Health Messenger, has traveled the country with Ben at her side, sharing her story and their
joint mission of inclusive health. Nell is also very active in her community in Minnesota, she speaks to local groups about her experiences with fitness, life, and the healthcare system, and uses her personal story. She is passionate about empowering her fellow athletes to make health changes of their own.
“Being Friends wiTh nell is A huge win-win For BoTh oF us And mAkes us BoTh BeTTer PeoPle.” “We have become good friends over the last several years, and have a lot in common,” said Ben, "We’ve lifted together, traveled together, worked together, and shared successes and failures together. Being friends with Nell is a huge win-win for both of us and makes us both better people.” Through the success of SOfit and looking to continue to make a positive impact, Ben has branched out to create an inclusive wellness education center for people of all abilities. Thrive Mighty is based on principles of universal design, and all programming, layout, and processes are built to be
inclusive for everyone. “Where education and practice meet you find empowerment,” explained Ben, “We’ll break the culture of enabling and lowered expectations by creating a supportive environment for people to demonstrate just how much they can do.” Ben calls this environment “Ability First”. “It’s incredible to watch someone do something they never thought they could, and then wonder, ‘What else can I do?’ said Ben. Nell is Ben’s biggest supporter in this new endeavor. She serves as the Abilities Officer on the board of directors for Thrive Mighty. “Before Special Olympics, I didn’t feel equal to other people. I wanted to be active and healthy, and I deserve it just like everyone else does,” Nell explained. “I had someone that was willing to reach out to me, and saw that I was struggling, and Ben helped improve things for me. He was the starting point to being able to do the baby steps to accomplish all these goals that I have set.” Nell has seen the change she was able to make in herself with Ben’s assistance and is excited for others to have the same opportunity.• ABOUT THE AUTHOR: Stephanie Corkett is External Health Communications manager with Special Olympics, based in Washington, DC.
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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
48 STEPS MILITARY FAMILIES CAN TAKE TO TRULY CONNECT DURING THE HOLIDAY SEASON By Angela Shaw MILITARY LIFE
52 TEN SMART TIPS TO HELP MILITARY FAMILIES SAVE ON HOLIDAY SPENDING 53 CHILD CARE OPTIONS FOR MILITARY FAMILIES WITH SPECIAL NEEDS PUZZLES & CAMO
54 ANOTHER PERSPECTIVE By Shelly Huhtanen
U.S. MILITARY H
STEPS MILITARY FAMILIES CAN TAKE TO TRULY CONNECT DURING THE HOLIDAY SEASON BY ANGELA SHAW
The ever-changing nature of day-to-day living is a major tradition that military families have in common with one another. The custom of constant change within the military family can serve to build resiliency and closeness within their nuclear family, but for the many members of their extended family, the incongruity of navigating the tide of change is often a stark reminder of the differences between life in a military family and the traditional family life of their cousin. 48 December 2018 • EP Magazine | www.ep-magazine.com
Add to this difference in lifestyle the adaptations required to support and scaffold a child with a learning or attention difference, within the family, and the chasm can feel even broader. Some initial steps to take in order to reach out, connect, and find your family’s space and pace within the dual roles of military family and member of a broader extended family are explored below.
1. CONNECT: The key to maintaining family connection is to keep lines of communication with family members engaged and active. If you are fortunate enough to be with extended family this holiday season, acquaint your kids with their roots and familiarize your extended family-line with your children. Be proactive in your endeavor by keeping the family connected through the creation of a regular family
H U.S. MILITARY newsletter throughout the year. Include in your newsletter an open-ended vibe that offers an encouraging air of invitation to true engagement. Some ideas: • Providing a positive manner of expressing your child’s individualized needs and unique personality fosters positive and productive relationships. • Sharing your variation on a traditional family dish that meets the unique dietary needs of your child, such as those related to allergy or sensory, leads to understanding and encourages acceptance. • Including images or fun facts about geographic customs or points of interests within your duty station vicinity, provides authentic learning and researching opportunities for your child, as well as great opportunities for discussion and development of mutual interests with cousins, aunts, and grandpas.
from them, take the opportunity to venture out to points of interest, learn new customs, and taste new foods. • Cook traditional favorites and newly discovered favorites with your child. Share with family, friends and neighbors. • Frame a favorite image of the family enjoying a local event. Mail it to grandparents or other family members back home. Have your child add a note, either dictated and written for them, or in their own handwriting. • Start the tradition of collecting a themed holiday ornament for your home from each duty station.
2. COMMUNICATE: Share your child’s heritage with them through storytelling. Share with them stories of when you were their age and include stories of the people who shared those times with EAT AND BE MERRY: Oftentimes, food is the central feature of a gathering. Bring preferred snacks you. Fill your child’s senfor your child to munch on in a quiet place in order to support them in continuing their good sorial system with images, mood and allowing for you to focus on gathering with friends and family. tastes, smells, and music. • Oftentimes, children do not realize the relationship and connection of family outside of their home. Abstract ideas, 4. PREPARE: Choose your attendance wisely with your such as relationships, are often built through experience. child in mind. Creating new traditions that work with what Storytelling through social narrative formats supports a your family is comfortable with allows for positive practice in child with special needs to access understanding through a a safe environment. Some ideas include: focused and explicit channel, when provided stories are tai• Ask the host if there is a quiet place that your child may be lored to their need to understand relationships and expectable to retreat to help him or her to regroup and return. ed behaviors. • Bring a favorite toy or electronic device for your child to • Comparing and contrasting family traditions and customs, enjoy and recharge with, if they become overstimulated. through presenting pictures and linking conversation, sup• Respect your child’s limits. Have an exit plan if those limits ports connection, pride, and understanding, as well as rich are met sooner than anticipated. The exit plan can include language experiences. a quiet place to recharge, or a full retreat, depending upon • Teaching your kids some of the card games or board games the behavior exhibited by your child. Provide a tag-team you played with your family as a child will serve to frontoption, if possible. Provide the opportunity for one parent load them, if the game is played at a holiday gathering. to leave the event with the child who needs to exit if they Tailor or modify the game to their level of ability or age. become overwhelmed and allow siblings the option to stay at the event. 3. EXPERIENCE: Enjoy your current duty station. Whether you are close to family or half way around the globe 5. VISIT: Oftentimes, food is the central feature of a gathwww.ep-magazine.com | EP Magazine • December 2018 49
U.S. MILITARY H IN-HOME AND COMMUNITY CARE RESOURCES Full CirCle Home A not-for-profit organization that connects deployed service members with an opportunity to send a gift to their spouse back home. Explore this opportunity on how to access this resource or how to support our service men and service women through this organization. www.fullcirclehome.org
operation Home Front A non-profit organization that offers many programs for military families throughout the year. At holiday time, the organization partners with Dollar Tree to provide toys for children of military families. Additionally, other military family supports can be located at this site. Further available at this site is a link for ways to give. To register for Operation Homefront Toy Distribution, you can find the registration link here: www.operationhomefront.org
operation Holiday Joy Initially established with Woman’s Day magazine, Operation Holiday Joy provides toys or food baskets at holiday time. Additionally, those who wish to donate can make contact through the same link. Military families can contact the Armed Services YMCA to reach out in times of need at: www.asymca.org
HOLIDAY SURVIVAL TIPS As the hustle and bustle of the holiday season arrives, many families who are raising children and young adults identified with autism spectrum disorder (ASD) prepare for the season in a different way than those families not touched by ASD. Because autism interferes with development of social interaction, verbal and non-verbal communication, and sensory development, the individual with autism and their family are affected by special challenges when the lights, music and action of the holiday season commence. Preparation is key to lessening the stress and creating an enjoyable experience for all involved. The holiday tips below are designed to support the family, as they prepare to engage in the sparkle and joy of the holiday, at a level appropriate to their child’s need and tolerance. preparation is an essential element for most individuals, especially individuals on the spectrum. Introduction of the holiday season and upcoming festivities through various visual strategies is a proactive manner to support and ready your child on the spectrum. Remember to be mindful of what you know about your child’s specific strengths and specific challenges in order to support them most appropriately. In preparation of upcoming activities, using a calendar and marking off events, creating visual schedules, and sharing social narratives are methods that can be designed to provide your child supports they need. Although the work you will be doing begins at home, many of the strategies and tips will build a bridge toward eventual generalizing outward through consistent practice and explicit teaching.
• advent Calendars are great visual products and are commercially available to the general public. These holiday calendars will support your child on the spectrum, right along with his/her typically developing sister or brother. • Including the Holiday deCorating events in the home on the calendar, or within a visual schedule, may provide support for a person with autism who has difficulty with change. Gradually decorating the house on a schedule, rather than all at once, can become your family’s tradition while supporting your child with ASD navigate change. • Compiling pHoto albums to explicitly support children through their visual channel can lessen anxiety and create a foundation of
50 December 2018 • EP Magazine | www.ep-magazine.com
understanding: * prepare a pHoto album in advance to include friends and family who will be visiting during the holiday season. Explore the photo album together. Talk briefly about each individual in the album. Allow your child to access the photo album often. * prepare a pHoto album in advance to include pictures from previous holidays that show pictures of the holiday decorations. Add to the photo album with your child, as you slowly introduce new holiday decorations. Create rules or a social narrative about the decorations, to include what can be touched and what cannot be touched. In addition to safeguarding family decorations, these rules
H U.S. MILITARY ering. Celebrations are often centered on a beautifully iced cake, a traditional dish, or a festive drink. When the child’s behavior can be triggered by unfamiliar foods or by low blood sugar brought on by hunger, it is a good idea to proactively plan to avoid any unnecessary anxiety or stress. • Feed your child before the event or bring preferred snacks for the child to munch on in a quiet place. A good practice is to privately mention to the host that the child has been fed ahead or may be eating a simple snack, in order to support him/or her in continuing their good mood and allowing for you to focus on gathering with friends and family. • Do not let other people’s insensitivity about your child’s food sensitivity undermine the rules and preparation that you put in place for the comfort of your child. Keep to the plan and support your child.
6. REACH OUT: Connect and find your place within your local military community. Gather and celebrate with friends and their families from your unit. Reach out to Morale
can be expanded to include when you are visiting other homes, classrooms, or businesses with holiday decorations. • prepare For wHen an event beComes overwHelming. When you are planning for visitors, set aside a calming corner for your child and teach them a signal to show when they are becoming overwhelmed or worried. Practice using the calming corner or calming room at various times, prior to when your guests arrive. Utilize the calming strategies that fit your child’s needs, such as soft music, rubbing his/her back, turning down the lights, reviewing a social narrative, provision of a sensory blanket, fidget, favorite toy or book, and so on. Through practice and insight of this self-management tool, utilizing a calming space outside of the home can be a goal for the future beyond holiday time. • praCtiCe Family traditions ahead of time. There are many social nuances attached to gifting that have the potential to go awry, without explicit and direct teaching. Additionally, certain religious rituals
Welfare and Recreation (MWR) to discover resources available to service men, service women and their families at holiday time. In addition to the family centers at military installations that include various programs in support of the families of military personnel, there are an array of organizations that are available to military families and those who wish to support our military families. Read more about options available to military families and to those who wish to reach out and support our military families at https://militarybenefits.info/christmas-programs-for-military-families-in-need ABOUT THE AUTHOR: Angela Shaw is a special educator who synthesizes her diverse education and experience to collaborate with families and staff, in order to promote success and encourage the students in her care to be life-long learners. Her publishing focus is on special education topics. Shaw’s son-in-law is an active duty U.S. Coast Guard. Shaw and her husband spend much of their free time adventuring to various PCS locations and enjoying every possible minute with their son-in-law, daughter, and baby grandson.
or family traditions may need to be taught and practiced. Social narratives and photo albums are some visual tools that can support your child in preparation and practice of these events, as well as role-playing scenarios. A task analysis relative to gifts includes the following major actions: *Turn-taking *Waiting *Responding • be Consistent with the basics: *Make sure that specific food and drink is available to meet your child’s needs, prior to the event. *Try to maintain sleep and food routines before, during, and after the holiday parties and events. *Be mindful of how much noise and sensory input your child can tolerate and respect their personal levels. Be ready to utilize an exit plan or calming corner to regroup. Avoid situations that you know will feed their fears or cause chaos, such as crowded shopping malls or long waits at crowded restaurants.
• be proaCtive and prepare family members for strategies to use to enhance interaction and lessen anxiety: *Help grandparents to understand if your child prefers to be hugged or not. *Coach others to remain calm and neutral, if your child becomes upset so that you can redirect and support in your consistent manner in accordance with your child’s needs. *Accept well-meaning advice with a smile and a calm and neutral response tactic of thanking the person for their perspective. *Pack a survival holiday bag containing sensory items, preferred snacks, toys or items, and water bottles. Include sensory items, such as earplugs or headphones to block noise, holiday-themed fidgets, or calming sounds or music. *Prepare your child for schedule changes, such as school parties, assemblies, and family outings. Above all else, enjoy your child and this holiday season through discovering and supporting your child at their level of need.•
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TEN SMART TIPS TO HELP MILITARY FAMILIES TO SAVE ON HOLIDAY SPENDING
Holidays mean spending, but you’ve got the discipline to keep it reined in this season. Celebrating with your family doesn’t have to lead to debt, and here’s how to make it a great holiday and maintain financial control.
perishable items you’ll need. It also helps spread the higher food costs over a couple of paychecks instead of just one. • Use your smart phone while shopping. Many retailers can send coupons right to your phone when you walk into their stores, which is handy (if not a little creepy). You can also use your phone to compare prices to make sure you’re getting the best deal. Check out these ways to tame the holiday frenzy: • Consider traveling on the holiday itself. You could • Make (and stick to) a budget. Money can fly out of score a much cheaper airline ticket by flying on the holiyour wallet fast for gifts, special meals, decorations and day instead of in the days travel. Plan ahead of time how before. Plus, arriving on the much you’re going to spend on big day conveniently gets each category, and then stay in you out of a lot of mealthat range. prep duty. • Take inventory. Don’t rush • Search hotel rates out to buy wrapping paper and airfares online. Take before checking to see if there’s advantage of websites that a forgotten stash of a dozen compare airfares and hotels rolls shoved into the back of a so you get the best deal. closet. The same is true for Many will also alert you to presents you may have hidden price drops. Another bonus: too well last year. Those online reviews can • Shop secondhand for decohelp you avoid a vacation rations. Thrift stores and you remember for all the garage sales usually have loads wrong reasons. Be sure to of holiday decorations as peocheck out special travel ple upgrade, downsize or realoptions for service memize their decorations somehow bers on lodging and flights. multiplied when they weren’t • If your holiday travel looking. SHOP SMART: The cost of gifts, special meals, decorations plans are flexible, con• Consider budget-friendly and travel can add up fast. Plan how much you’re going to sider Space-available pasalternative gifts. Homemade spend on each category, and then stay in that range. senger transportation, or gifts are a great option if you’re Space-A travel. This program allows you to fly for free or crafty or a whiz in the kitchen, or even if you aren’t either very low cost on military flights if there is room for you. of those, but can follow online directions. Coupons for Schedules change and restrictions apply, so learn more your “services,” like babysitting, can also make good presabout Space-A Travel at www.militaryonesource.mil/recreation-travelents. • Make your own holiday cards. You can save money shopping/travel/travel-planning/plan-your-trip-with-space-a-travel (and trees) by using e-cards to send greetings to your loved There are a lot of ways to save money at the holidays. Check ones instead of traditional cards. Many websites offer free out other budget-friendly tips from Military OneSource, or take or inexpensive e-cards, some with options to add videos or advantage of free financial counseling (www.militaryonesource.mil/confislideshows. dential-help/interactive-tools-services/financial-counseling/financial-counseling-servic• Plan holiday meals early. Knowing what you’re going to es-for-a-secure-future) available in person, by phone or by video chat. cook well in advance lets you shop the sales for the non– Military One Source
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H U.S. MILITARY
CHILD CARE OPTIONS FOR MILITARY FAMILIES WITH SPECIAL NEEDS Finding the right care for your child with special needs starts with asking the right questions. The military services offer quality, affordable child care options, both on the installation and in the civilian community. Finding the best fit for your child is not impossible. Here are some questions to ask as you search for the best child care decision for your child with special needs.
WHAT IS THE BEST SETTING FOR MY CHILD? If your child has special needs, your military service will work closely with you to find the best placement for your child. You can contact your installation child development center to learn more about child care options for your family. Each installation works with a multi-disciplinary Inclusion Action Team, or IAT, that includes the parent in the discussion of how to best meet the individual needs of the child. If you don’t have access to installation child development programs or you prefer to have your child cared for off the installation, you still have options.
INSTALLATION RESOURCE AND REFERRAL PROGRAMS WHAT ARE MY CHILD’S RIGHTS? The Americans with Disabilities Act (www.ada.gov/2010_regs.htm) protects children against discrimination from child care programs, unless the child’s presence would pose a direct threat to the health or safety of others or require a fundamental alteration of the program. You should also know: • Military and civilian child care programs must make reasonable accommodations to integrate children with disabilities. • Programs cannot assume that a child’s disability is too severe for successful integration. • There must be an individualized assessment based on professional observations, past history and standard assessment criteria.
Most installation child development services programs have a Resource and Referral office to help you find the right care for your child with disabilities. Keep in mind: • This office be the first contact when you are looking for child care resources. • MilitaryINSTALLATIONS (https://installations.militaryonesource.mil/) is the place to find contact information for military child development Resource and Referral offices. • Reach out to the enhanced EFMP Resources, Options Consultations, or ROC, (www.militaryonesource.mil/confidential-help/specialty-consultations/efmp-roc) for easy access to the information and resources you need.
WHAT TYPES OF CHILD CARE ARE OUT THERE?
There may be several child care options on your installation: • Child development centers: On your installation, you’ll usually find a child development center offering care for children ages 6 weeks to 5 years. Hours may vary but are typically 6 a.m. to 6 p.m. on weekdays with extended hours at some locations, year-round. Some centers offer part-time and hourly care, too. Your child would be placed with other children in the same age group, who may or may not have disabilities. • Family child care homes: Family child care homes may be a good choice for your child. In their own home, providers care for a small group of children of all abilities, up to age 12. The home may be on or off the installation and may offer additional hours, such as before and after school, nights and weekends. • School-age care programs: These programs for children ages 6 to 12 are usually open before and after school, on holidays and for summer day camp. These care programs may use space in a child development center but are more often located in youth centers or schools. The children receive a planned curriculum and the ability to interact with their peers, who may or may not have disabilities. • Installation programs for youth and teens — For children ages 12 to 18, many military installations offer activities and classes at youth or community centers. These programs are open to children with and without special needs.
The Army, Marine Corps, Navy and Air Force work with Child Care Aware of America (www.usa.childcareaware.org) to make quality community-based child care more affordable and accessible to military families. Some children may require more than routine or basic care, such as children with or who are at-risk of disabilities, chronic illnesses or physical, developmental, behavioral, or emotional conditions. MilitaryChildCare.com is a Department of Defense website that helps families in any service branch find and request military operated or military subsidized child care anywhere in the world. The website assists families with children with special needs in their search for care through a process that includes an IAT and Military Service specific IAT protocols. The IAT process supports reasonable accommodation by considering the needs of the child, the child care environment, staffing and training requirements, and the resources of the program. Programs welcome the opportunity to discuss each family’s needs throughout their search process. More information is available by contacting the local program. You may also contact the Exceptional Family Member Program (www.militaryonesource.mil/family-relationships/special-needs/exceptionalfamily-member/exceptional-family-member-program-the-essentials) to explore child care resources for families with special needs. • – Military One Source
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PUZZLES & CAMO
Another Perspective Broden taught me a great lesson this year during Halloween. Just because something makes sense to other people, doesn’t mean we have to do it if doesn’t make sense to us.
Halloween was here. Bags of candy were bought and dumped into bowls on the table to give out that evening. It was that time of year when skeletons and ghosts were put on display in front yards and the main topic of discussion was what costume everyone was going to wear this year. Halloween parties were already on the calendar, for adults and children. I’ll admit. I’m sort of a Halloween party pooper. I like to decorate for Harvest with pumpkins and bales of hay in my front yard. You won’t see graves dug into my yard with spooky witches cackling by my front door. Those spectacles are for the Halloween enthusiasts down the street. Even though I don’t own a smoke machine and a tube of fake blood with vampire teeth, I still try. Since Broden was a toddler, we have dressed him up and taken him trick or treating. One year we made it to two houses and then he started to scream. After that experience, our tradition was to let Broden sit out trick or treating while Hayden ran around the neighborhood to celebrate. Mark or I would pass out candy so we would not be left with five bags of chocolate to eat through the rest of holidays. I will neither admit nor deny that this year, a few Butterfingers were coincidentally stashed in our pantry for later. Now that Broden is 12 years old, I thought this year would be the last year to really try as far as Halloween was concerned. We have horror stories of putting helmets on Broden or furry costumes with headpieces, so I thought I would keep it simple this time around – he dressed up as a basketball player. One of Hayden’s old basketball uniforms fit Broden quite well. The uniform looked comfortable, so I thought it would be a good choice.
That afternoon, I met Broden at his autism clinic to spend time with him at their Halloween party. His clinic loves to celebrate and create a fun experiences for the kids. Tables were littered with food and the room was filled with opportunities to play games. I thought this would be our year. This year, Halloween was going to be a success. I dragged Broden over to the first game. The point of the game was to toss the rings onto the witch hats laying on the floor. I demonstrated for Broden a few times and explained to him that it’s all in the wrist, “Just toss the rings and catch the point of the hat.” I gave a few rings to Broden for him to try. Unenthused, he took all three rings, walked over to one of the hats and placed them on the hat. His face was priceless, “Why are you trying to toss them when you can just walk over and put them on the hat?” We weren’t going to stop there. Everyone loves cornhole. How can you go wrong with cornhole? His tutor and I explained the game to him and we tossed a few beanbags towards the wooden boxes that had holes in them. “Broden, just toss the bag towards the box and try to get the bag in the hole.” Surely this would be the game that would keep him interested. Broden threw a few and looked uninterested. We gave him one more bag to try, “C’mon Broden. Throw it a little harder.” Broden took the bag and chucked it at a kid walking by and hit him in the arm. He looked over at us annoyingly, “Well, I hit someone. Am I done?” I walked over and gave him a high five, “You got two points for hitting someone. Good job.” At this point it was official. I knew this Halloween thing was not his jam.
54 December 2018 • EP Magazine | www.ep-magazine.com
As we walked next door to relax on his favorite couch, I tried to think of the holiday from his perspective. Basically, for years we’ve been asking him to walk door to door to people that he didn’t know, to say “trick or treat,” and then take the candy they gave him. Since he can’t have dairy or gluten, he wouldn’t be able to eat 80% of the candy once he dragged them home. By the way, while he was doing this, we wanted him to dress up in costumes that made him sweat or were too itchy to wear. As if that wasn’t enough, I dragged him to a party and asked him to throw rings on a witch hat when it was just easier to squat and place them on the hat. I brought bean bags to him and told him to throw them in a hole when it was probably more gratifying to hit someone and watch them flinch and say, “Ouch!” Now I look at it that way – Broden was right. I turned to him and asked, “You want to go home? I can just give you a bag of gummies that you can eat in our bedroom.” He smiled and followed me to the car. Broden taught me a great lesson this year during Halloween. Just because something makes sense to other people, doesn’t mean we have to do it if doesn’t make sense to us. • PUZZLES & CAMO Shelly Huhtanen is an Army wife stationed at Fort Benning, GA who has a child with autism. She enjoys sharing her experiences of day-to-day life caring for her son with autism while serving as an Army spouse. She authored “Giving a Voice to the Silent Many” that encompasses many stories of raising a child with autism in the military. Shelly is passionate about autism advocacy for our military and works to bring awareness to our local legislators and command about providing better support for our military autism community, such as better health care and education.
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