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THE WORLD of GENETICS and GENETIC COUNSELING

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1 in 4 U.S. adults – an estimated 61.4 million people – reported a special need or Disability.* Through Voya’s distinctive Voya Cares program, you’ll get access to holistic financial education and retirement planning solutions geared to families with disabilities and special needs to help you move closer to the future you envision. For more information, visit voyacares.com

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CONTENTS

AUGUST 2019 VOLUME 49 ISSUE 8

14 ANNUAL

32

ISSUE

HEALTHCARE HEALTHCARE AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

14 ON HOSPITALS, CHILDREN WITH DISABILITIES AND EVERYONE ELSE By H. Barry Waldman, DDS, MPF, PHD and Steven P. Perlman, DDS, MSCD, DHL (Hon) HEARTSIGHT

18 “I” IN ANIRIDIA By Christina Llanes Mabalot

22 WHAT TO DO WHEN THE INSURANCE COMPANY SAYS NO By Lauren Agoratus, M.A.

26 THE NEXT STEP FOR INCLUSION: STATE CME REQUIREMENTS ON DISABILITIES

40 TELEDENTISTRY: A NEW PARADIGM TO IMPROVE ORAL HEALTH

36

By David Fray, DDS, MBA and Amber Lovatos, RDH, BSDH

44 IMPROVING PARENT AND DENTAL OFFICE COMMUNICATION By June Sadowsky, DDS, MPH and David Fray, DDS, MBA

47 SMOOTHING THE TRANSITION FOR YOUNG PEOPLE WHO LIVE WITH CHRONIC DISEASE By Linda Kobert

44

50 FIRST-EVER SUCCESSFUL MIND-CONTROLLED ROBOTIC ARM WITHOUT BRAIN IMPLANTS Source: Carnegie Mellon University

By Annette Sanjurjo Lizardo, Esq.

32 GENETIC COUNSELORS: YOUR PARTNERS IN NAVIGATING THE EXCITING (AND SOMETIMES SCARY) WORLD OF GENETICS By Dawn Laney, MS, CGC, CCRC

36 OBSTRUCTIVE SLEEP APNEA: AN UNDERDIAGNOSED CHRONIC DISORDER By Paul Levine, DDS, David Fray, DDS, MBA and Ben F. Warner, MS, DDS, MD.

38 PATHOGRAPHY OF DEMENTIA By Patti Wade, CDCCI AmyJo Schamens, BCBA and Rick Rader, MD

FEATURES 52 MY JOURNEY OF GRATITUDE: WHAT I’VE LEARNED AND WHY I’M THANKFUL! By Rose Morris

56 WHY WE NEED TO MAINTAIN A STRONG FEDERAL COMMITMENT TO SPECIAL OLYMPICS

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By U.S. Senator Roy Blunt (MO.) ON OUR COVER EP’s Annual Healthcare Issue covers topics like genetics, inclusion, transition, teledentistry and much more. Coverage begins on page 14.

47 ep-magazine.com | EP Magazine • August 2019 1

CONTENTS

AUGUST 2019 VOLUME 49 ISSUE 8

DEPARTMENTS ANCORA IMPARO

4 SPELLBOUND By Rick Rader, MD

6 WHAT’S HAPPENING 13 NEW PRODUCTS PLANNING AND ADVICE

17 ADD AN ABLE ACCOUNT TO A SPECIAL NEEDS FINANCIAL PLAN

6

Contibuted by Voya

68 PRODUCTS & SERVICES

MILITARY SECTION MILITARY LIFE

60 PCS SEASON: SOLUTION-BASED COMMITMENT TO THE MILITARY-CONNECTED CHILD WITH SPECIAL NEEDS

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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

MILITARY SECTION

By Angela Shaw

64 MENTAL HEALTH MATTERS IN THE MILITARY PUZZLES & CAMO

66 PROBLEMS IN THE PEW 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: www.ep-magazine.com

MILITARY LIFE

60 PCS SEASON: SOLUTION-BASED COMMITMENT TO THE MILITARY-CONNECTED CHILD WITH SPECIAL NEEDS By Angela Shaw

64 MENTAL HEALTH MATTERS IN THE MILITARY PUZZLES & CAMO

66 PROBLEMS IN THE PEW 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.

2 August 2019 • EP Magazine | ep-magazine.com

Information and Support for the Special Needs Community

VOLUME 49 ISSUE 8

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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

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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 ©2019 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 Steven P. Perlman, DDS, MScD, DHL (Hon) Clinical Professor, Boston University, School of Dentistry, Boston, MA

Saadi Ghatan, MD Site Chair, Neurosurgery, Mount Sinai West, Mount Sinai St. Luke’s,New York, NY

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

Jean F. Campbell Principal, JF Campbell Consultants; Founding Board Member, Professional Patient Advocates in Life Sciences (PPALS)

Matthew Holder, MD CEO, Lee Specialty Clinic, Louisville, KY Global Medical Advisor for Special Olympics International

Henry G. Chambers, MD Director, Southern California Cerebral Palsy Center at Rady Children's Hospital-San Diego, Co-director 360 Sports Medicine Program

Gary Liguori, Ph.D Fellow of the American College of Sports Medicine (ACSM), Dean, College of Health Sciences, University of Rhode Island

David Fray, DDS, MBA Associate Professor, Department of General Practice and Dental Public Health, University of Texas School of Dentistry, Houston, TX

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

Steven M. Wolf, MD Associate Professor of Neurology and Director of Pediatric Epilepsy, affiliated with Mount Sinai Beth Israel, Mount Sinai St. Luke’s, Mount Sinai West, New York, NY

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

Stephen B. Sulkes, MD Pediatrician, University of Rochester Medical Center, Rochester, NY

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Kyle Hauth Executive Director, Orange Grove Center, Chattanooga, TN

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

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

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ep-magazine.com | EP Magazine • August 2019 3

ANCORA IMPARO

RICK RADER, MD

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EDITOR-IN-CHIEF

Spellbound It’s a given that before I send the draft of this article to the editor of EP Magazine, I will call out the cavalry in the form of spellcheck. I expect that I will be hitting a large number of “ignores” when it turns the corner and encounters the paragraph of intentionally misspelled phrases.

With the popularity of smart phones now at its peak (260 million U.S. users) and emails, texts and messages competing for traditional human communication, we have seen an interesting and often amusing consequence – spelling errors and the abundant excuses for creating them. It’s not unusual to see the “explanation” of the spelling error and the “reason” to excuse them under the sender’s signature. It’s now commonplace to read, “Please excuse any spelling or grammatical errors sent from my mobile device.” Consider the various attempts at humorous excuse declarations collected by Pravash Pujari. “Consider any misspellings my gift to you.” “Typed with thumbs.” “Sent via a really tiny keyboard.” “Pardon random autocorrects and fat finger typos.” “Warning: I either dictated this to my device, or I typed it clumsily. Expect typos and weirdness.” “Sent while walking into stuff, excuse brevity and tpyos.” “Don’t bother alerting me to any misspellings, this is not a video game.” One can only imagine the response from a professor if you turned in a term paper or thesis with the addendum “Typos happen, but just ignore them.” You can be sure that the red pen note scrawled across the top would not read, “Come see me in my orifice as sun as possible.” Perhaps we don’t really need to hit the “spell check” key. “Theyre’s a reason why your barin can raed this.” Natalie Wolchover (both names spelled correctly by the way), writing in LIVE provides: “For emaxple, it doeson’t mttaer in what order the ltteers in a word aepapr, the olny iprmoatnt thing is that the frist and lsat ltteer are in the rghit pcale. The rset can be a total mses and you can still raed it wouthit pobelrm.” 4 August 2019 • EP Magazine | ep-magazine.com

“S1M1L4RLY, YOUR MIND 15 R34D1NG 7H15 4U70M471C4LLY W17HOU7 3V3N 7H1NK1NG 4BOU7 17.” When I typed the above, obvious misspellings my computer screen had more red underlined words than a manuscript from the CIA. So how exactly does the brain interpret misspellings, correct them, process them and move on? Marta Kutyas, a cognitive neuroscientist and the director of the Center for Research in Language at the University of California, San Diego suggests that “context” is the key. “We use context to pre-activate the areas of our brains that correspond to what we expect – we’re reading the passage perfectly, because you automatically (and subconsciously) went back and filled in any gaps in your knowledge, based on subsequent context – the words that came later.”

down to the meat (and meaning). One spelling mistake can destroy your life. A husband sent this to his wife: “I’m having a wonderful time. Wish you were her.” It’s a given that before I send the draft of this article to the editor of EP Magazine (Exceptional Parent), I will call out the cavalry in the form of spellcheck. I expect that I will be hitting a large number of “ignores” when it turns the corner and encounters the paragraph of intentionally misspelled phrases. The first computer spell checkers were “verifiers” instead of “correctors.” They offered no suggestions for incorrectly spelled words. Many educators blame the “correctors” version of spell checker for the “dumbing down” of developing children. Recent experiments have tracked spelling errors of students writing essays with both a working and non-working spell check capacity. With spell checks off, students with high verbal SAT scores made an average of five auditing errors and students with lower SAT scores made an average of 12.3 errors. With the spell check on, high scoring SAT students made an average of 16 errors, and lowscoring students made 17. The researchers’ results were significant, especially when you SPELLING DISASTER: “One spelling mistake can destroy your life. A husband sent this to his wife: ‘I’m having a consider that the experiment wonderful time. Wish you were her.’” was meant to show that spell Our brains process all the letters of a checkers were more effective for those with word at once, rather than one at a time. In high verbal abilities. Instead, their results the case of the words where the letters are showed that groups were worse with the mixed in with numbers, it appears that the spell checker on.” digits have a weaker influence on our brains But in the corridors of spelling excellence, than their actual status as digits. Our brains all is not lost. There is one group of students allow us to ignore the detours and get right that could teach “spell check” a thing or two

WHAT’S HAPPENING about how to line up letters to make words appear the way they were intended. Competitors in the 2019 Scripps National Spelling Bee were able to handle the following words in the final rounds of competition. And even if this were an “open book” exam, spell check would have been sidelined. It was a perfect setting for that awkward moment

“Parents of children with special needs raise their eyebrows when they find the following words (in Individual Education Plans) missing: Inclusion. Therapy. Support. Individual. Accommodation. Assistance. Restricted. Unavailable.” when you spelled a word so wrong that even autocorrect was like, “I got nothing man…” Vibratiuncle (a slight vibration). Aufgabe (a task or exercise, especially when assigned experimentally). Rijsttafel (An Indonesian midday meal). Macclesfield (a silk with small allover patterns used especially for neckties). Marmennill (a fabled marine male creature).

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hile parents of children with special needs would appear dumbfounded if confronted with any of those words, they quickly raise their eyebrows when they find the following words (in Individual Education Plans) not necessarily misspelled, but missing: Inclusion. Therapy. Support. Individual. Accommodation. Assistance. Restricted. Unavailable. By the way, “exceptional” has two e’s. • 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

LIVING WITH ALPHA-1 ANTITRYPSIN DEFICIENCY: COMPLETE GUIDE TO RISK FACTORS, SYMPTOMS & TREATMENT OPTIONS “This book outlines the common misconceptions about this condition and the financial hardship it places on patients. Whether you’re an Alpha-1 patient, a family member or friend, there is something for everyone within Bowick’s work.”

insight into the everyday challenges experienced by those who battle this rare condition.” While there is currently no cure for A1AD, patients can take action to reduce their symptoms and improve their overall well-being by practicing proper self-care and following a earning to manage the symptoms of comprehensive wellness plan. Don’t just live alpha-1 antitrypsin deficiency (A1AD) with A1AD–live well. can seem overwhelming. But by takAbout the Authors: Samantha Bowick has ing everything one day at a time and maka Master of Public Health degree from Liberty ing sure people are University. She provided with the received a Bachelor of care and support Science degree in they need, they can Health Care still live a life that is Administration at fulfilling and meanColumbia Southern ingful. University. She is Living with Alpha-1 devoted to using her Antitrypsin Deficiency education and experiincludes information ences to advocate for on the latest surgical women who suffer and non-surgical treatwith endometriosis ment options, tradiand other chronic illtional and alternative nesses. She is the medical options for a author of Living with full-body approach to Endometriosis. She wellness, guidance on currently lives in Aiken, Title: Living with Alpha-1 self-care techniques South Carolina. Antitrypsin Deficiency for patients and careMarie H. Bowick has Authors: Samantha Bowick and givers, and valuable lived in Aiken, South Marie Bowick medical and communiCarolina her entire life, Publisher: Hatherleigh Press ty resources for A1AD and was diagnosed Publication Date: August 27, 2019 sufferers. The book with A1AD at 46 years Paperback: 96 pages also includes a foreold. She has been marISBN-13: 978-1578268092 word by pulmonoloried for 27 years and is Available at www.hatherleighpress.com, gist Dr. Nicholas J. the mother of two amazon.com and barnesandnoble.com Sanito. daughters. She Scott Bruun, Executive Director of the worked in manufacturing for 15 years and Chronic Disease Coalition says Living with then became a caregiver to her mother, Alpha-1 Antitrypsin Deficiency “provides father, and youngest brother. •

L

ep-magazine.com | EP Magazine • August 2019 5

WHAT’S HAPPENING NEW FEDERAL RESEARCH EXAMINES GUARDIANSHIPS OF PEOPLE WITH INTELLECTUAL, DEVELOPMENTAL DISABILITIES In a recently released report, new federal research examining guardianships of people with intellectual and developmental disabilities (ID/DD) finds data supporting the existence of a “school-toguardianship pipeline” that results in people with ID/DD being placed under guardianships from their earliest years of majority rather than exploring use of less restrictive decisionmaking supports.

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nder guardianship, an individual can have the following rights removed: the right to marry; the right to determine one’s own friends; the right to vote; the right to seek or retain employment; the right to consent to a medical procedure, including a sterilization or abortion; the right to drive; the right to decide where to live; and many others. In its latest report about these and other related findings, the National Council on Disability (NCD) – an independent federal agency that advises Congress, the President, and other federal agencies, found that school officials may be biasing parents toward pursuing guardianships over their adult children with disabilities because of the manner in which they are conveying information – and without understanding the legal implications of guardianship. Schools are the number one referral source for guardianship and a full 58 percent of people with ID/DD ages 18-22 receiving publicly- funded services have guardians, most of whom will remain under guardianships for decades to come – many unnecessarily. NCD’s newest research examines whether the increased risk for people with ID/DD being under guardianships may be linked to the different ways in which states apply their guardianship laws, as well as to assumptions 6 August 2019 • EP Magazine | ep-magazine.com

COLD COMFORT: Individuals with ID/DD are at greater risk of being subject to guardianship than other adults because of widely-held stereotypes about their ability to make decisions and function as adults. about the abilities of people with ID/DD to fully experience the dignity of risk. The research goes on to examine how being under a guardianship impacts one’s ability to benefit from key civil rights laws. NCD’s report, which relied heavily on key informant interviews and analysis of applicable existing data sets, also provides an indepth analysis of the experience of people with ID/DD under guardianships in Washington, D.C., before and after recent guardianship reforms. The report concludes by offering policy recommendations to states, the Social Security Administration, the U.S. Department of Education, the U.S. Department of Justice, the U.S. Department of Health and Human Services, and state courts. Among the recommendations, NCD calls on DOJ to issue guidance to states on their legal obligations under the ADA in the context of ensuring that guardianship be a last resort imposed only after less-restrictive alternatives have been determined to be inappropriate or ineffective; and calls on ED to do more to promote its existing guidance that recognizes the serious implications of

guardianship and encourages schools to recognize less restrictive decision making supports for adults in special education.Read the report at ncd.gov/publications/2019/turning-rights-into-reality. ABOUT THE NATIONAL COUNCIL ON DISABILITY

First established as an advisory Council within the Department of Education in 1978, NCD became an independent federal agency in 1984. In 1986, NCD recommended enactment of an Americans with Disabilities Act (ADA), and drafted the first version of the bill which was introduced in the House and Senate in 1988. Since enactment of the ADA in 1990, NCD has continued to play a leading role in crafting disability policy, and advising the President, Congress and other federal agencies on disability policies, programs, and practices.

PHOTO COURTESY NATIONAL COUNCIL ON DISABILITY

VOLUNTEERS ARE NEEDED. IF INTERESTED, EMAIL [email protected]

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WHAT’S HAPPENING AAIDD OPPOSES A PROPOSED REVISION TO THE DSM-5’s ENTRY FOR INTELLECTUAL DISABILITY The American Association on Intellectual and Developmental Disabilities, in late July, submitted comments to the American Psychiatric Association strongly opposing a proposed change to the DSM-5 concerning the diagnostic criteria for intellectual disability.

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AIDD is the oldest inter-disciplinary professional society with a focus on intellectual disability in the world. Since its inception, AAIDD has produced guidelines naming, defining, and diagnosing the condition known today as “intellectual disability.” In 1910, AAIDD published the first scholarly international terminology and classification system for ID (today the AAIDD manual is in its 11th edition). The AAIDD manual has been revised as the science and understanding of the condition has evolved over time; its approach and evolving understanding of the condition have been shared by other major diagnostic systems, including the DSM and ICD. On September 7, 2018, AAIDD proposed that the following sentence be deleted from the DSM-5’s diagnostic criteria for ID: “To meet diagnostic criteria for intellectual disability, the deficits in adaptive functioning must be directly related to the intellectual impairments described in Criterion A.” The rationale for this modest proposal was that the current text appeared to add a new, fourth criterion to the diagnostic criteria, one that required the deficits in adaptive functioning be “directly related to” (commonly understood to mean “caused by”) the deficits in intellectual functioning, a criterion which is neither possible for clinicians to ascertain nor empirically supported. In its proposal, AAIDD also noted that problems created by this phrase were not merely a theoretical concern, but that the practical impact of this change to the diagnostic criteria could easily be foreseen in matters as diverse as eligibility for supports and services, educational placement and assistance, protection from discrimination, funding for ongoing services and supports, and various legal issues in the criminal and civil justice systems. On July 8, 2019 APA offered a proposed revision, open for public comment, to address the issues raised by AAIDD; however, AAIDD strongly opposes the current proposed revision as it: • Is not supported by empirical evidence (there is no empirical evidence supporting the notion of a causal link between intellectual functioning and adaptive behavior); • Incorrectly assumes that adaptive functioning and intellectual

PHOTO COURTESY AAIDD

functioning are not separate and independent constructs; • Plainly requires clinicians to establish that the deficits in adaptive functioning are “a consequence of” intellectual deficits, which is impossible for clinicians to scientifically or clinically establish; • conceptual confusion by conflating etiology with diagnostic criteria, • Mistakenly asserts causation that puts a primacy in diagnosis on IQ and creates internal inconsistency in the criteria by anchoring both clinical elements of the diagnosis in IQ; • Creates diagnostic error by creating a fourth diagnostic criterion; and • Represents a significant and dramatic departure from previous DSM manuals, contradicts current clinical and scientific consensus, and is out of step with other diagnostic systems (i.e., the World Health Organization’s ICD and AAIDD) that define the same condition. The proposed revision and comment portal are available at www.psychiatry.org/psychiatrists/practice/dsm/proposed-changes. The proposed revision is open to public comment and the comment period ends August 14, 2019.

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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.

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WHAT’S HAPPENING SPECIAL NEEDS GROUP/SPECIAL NEEDS AT SEA DONATES BACKPACKS TO MORE THAN 175 STUDENTS Special Needs Group®/Special Needs at Sea,® a leading global provider of wheelchair rentals, scooter rentals, oxygen rentals and other special needs equipment rentals, donated backpacks to more than 175 Broward County Public School students attending the July 27 Dania Beach Lions Club-sponsored Back-toSchool Shopping Spree at the Walmart in Davie, Florida.

“Knowledge is something that students can carry with them wherever they go and travel in life, and we want to help provide them with the best opportunity to gain that knowledge,” he continued. Special Needs Group® / Special Needs at Sea® is a leading global provider of wheelchair rentals, scooter rentals, oxygen rentals and other special needs equipment rentals. It also offers a broad range of special needs equipment for purchase. Recommended by the world’s major cruise lines for superior service and value, Special Needs Group also services guests visiting hotels, resorts, theme parks and convention centers. Special Needs Group provides service in 215 ports and cities located in 68 countries. It is located at 302 NW 1st Street, Dania Beach, FL 33004. For more information, visit www.specialneedsgroup.com. The Dania Beach Lions Club was formed in 1947 supporting the core mission of Lions Club International with the motto “We Serve.” While vision is our primary focus by providing screenings, collecting glasses and raising awareness of eye disease, other projects include protecting the environment, feeding the hungry and caring for people with special needs.•

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READY-TO-GO-BACK PACK: Special Needs Group donated backpacks at the Dania Beach Lions Club’s Back to School Shopping Spree hosted by Walmart. To prepare for the upcoming school year, students picked out school supplies, uniforms and other necessities.

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chool guidance counselors recommended students for participation. Qualified students were given a $50 budget and paired up with volunteers to shop at Walmart. Students picked out school supplies, uniforms and other necessities to prepare for the upcoming school year. After shopping, students were encouraged to express gratitude and appreciation to their volunteer helper. They also were asked to “pay it forward” by doing something nice for someone else. “While SNG has a mission to deliver an accessible world through special needs equipment, we also place great importance on supporting the local community – especially education,” said Andrew J. Garnett, founder, president & CEO of SNG. “We want to be a part of ensuring that Broward Countystudents have all of the tools they need for a successful school year.

PHOTO COURTESY SPECIAL NEEDS GROUP

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NEW PRODUCTS

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TWINKLES TO GO OCTO

TOGU LEO THE LION TOGU Leo the Lion for Pediatric Balance is a fun way for children to address vestibular stimulation, balance, sensory integration and mobility. Leo is stable and well suited for children's strength and coordination exercises. Can be used for one-on-one therapy or group play. Color: orange. Weight Capacity: 135 pounds. Height: 20 inches.

SCHOOL SPECIALTY, INC. W6316 Design Drive Greenville, WI 54942 Phone: 888-388-3224 Fax: 800-513-2467 Web: www.schoolspecialty.com Email: [email protected]

Twinkles To Go Octo is a switch-activated toy that helps to teach children cause and effect as well as increasing visual attention. This adapted illuminator reflects an enchanting, yet calming pattern of stars and fish in blue or green. This night light has been adapted in two ways: activate one switch and it turns the light on or off; activate the second switch to choose the color pattern. The light turns off automatically after 45 minutes and works with long-lasting LED’s. Use with or without switches. Switch not included. Color may vary. Size: 4½ inches long by 4½ inches wide by 4½ inches high. Weight: ¼ pound. Battery: 3 AAA. ENABLING DEVICES 50 Broadway Hawthorne, NY 10532 Phone: 800-832-8697 Fax: 914-747-3480 www.enablingdevices.com

MAGNETIC COLOR MATCHING ACTIVITY Marvel Education Magnetic Color Matching Activity is designed for children ages three and up with autism spectrum disorder to guide the colored balls into the matching colored pencils using the attached magnetic wand. The square wooden base is enclosed under an acrylic panel. Measurements: square base measures 11-1/2 inches. Materials: wooden

base enclosed under an acrylic panel. Ages 3 and up. AUTISM PRODUCTS 8776 East Shea Boulevard Suite 106-552 Scottsdale, AZ 85260 Phone: 815-550- 1819 Web: www.autism-products.com

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. 12 August 2019 • EP Magazine | ep-magazine.com

NEW PRODUCTS TACTILE TIGER CHEWABLE ARMBAND The Tactile Tiger Chewable Armband is a wearable chewable armband and powerful sensory tools. It is constructed from an FDA approved material that is safe for oral use. The top of the band offers a raised surface in a tiger configuration to give a tactile sensation. The armband helps children self-regulate during stressful times. Can be used during dinner, school, bed time, or any time a child needs self-calming. Armband is selfadjusting. Material is BP, lead and phthalate free. Available in red, blue, orange, green, and yellow.

THERAPRO 225 Arlington Street Framingham, MA 01702 Phone: 800-257-5376 Fax: 800-268-6624 Web: www.theraproducts.com Email: [email protected]

FOAM EARPLUGS These Foam Earplugs are designed for children with sensory processing disorder and autism spectrum disorder to reduce noise around them. They are a tool for children who need quiet for sensitivity or for focused activities. Earplugs may help shut out distractions in a socially acceptable manner. Sounds not easily heard by others are often troublesome for a child with autism. What we consider a normal amount of noise may be highly disturbing for a child with autism, and these sound reducing options can offer temporary relief. Conical shape. Attached to cord. Reusable if washed in warm water with mild soap and completely dried before use.

ESPECIAL NEEDS 1850 Borman Court St. Louis, MO 63146 Phone: 877-664-4565 Fax: 800-664-4534 Web: www.especialneeds.com

THUMB SWITCH This Thumb Switch is designed for use by individuals with fine motor skills for individuals with physical or neurological disabilities. The thumb switch capitalizes on thumb mobility. The users hold the yellow cylindrical base in their hand and press the red button with the thumb for momentary switch operation. The soft, flexible plastic base can help teach grasping and fine motor skills. Dimensions 4-1/2 x 1 inches. 1-1/2 inch activation surface. Activating force is 3.5 ounces. Color: yellow and red.

ENABLEMART 865 Muirfield Drive Hanover Park, IL 60133 Phone: 888-640-1999 Fax: 800-235-1305 Web: www.enablemart.com Email: [email protected]

ABILITATIONS ARTICULATE GAME Abilitations Articulate Game students practice target sounds in the initial, medial, and final positions in nouns, verbs and adjectives at the word, sentence, phase and carryover level. Game includes 95 cards, 1 dry erase marker, and an eraser tip. All cards are dry erase for easy marking on the circles provided on each card or for tallying correct responses while making therapy fun for kids. It includes 90 target sound cards that can elicit thousands of responses through a variety of combinations of cards. Also includes extra cards for incorporating articles, adjectives, pronouns, and modals to form phrases and sentences. Helps students articulate sounds and learn important vocabulary. Can be used in the home or classroom. ABILITATIONS/SPORTIME INTERNATIONAL PO Box 922668 Norcross, GA 30010 Phone: 800-850-8602 Fax: 800-845-1535 or 770-263-0897 Web: www.abilitations.com Email: [email protected]

ABLEDATA

www.abledata.com ep-magazine.com | EP Magazine • August 2019 13

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

ANNUAL

ISSUE

HEALTHCARE For children with special health care needs, hospitals become a “second home” to receive the necessary health care that would enhance their abilities to have a healthy, productive life.

Of Hospitals, Children with Disabilities and Everyone Else BY H. BARRY WALDMAN, DDS, MPH, PHD AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)

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ospitals originated in Europe in past centuries to service pilgrims traveling months on the road as they sought the next religious shrine. They have now become centers for providing health care, research and education. Today they are undergoing dramatic advances in technology, interactive programs and economic arrangements. No matter the changes, their prime effort remains to provide care for the evolving populations they serve.

FIRST, THERE ARE REAL YOUNGSTERS Almost all of us spent the first days of our life in a hospital. We have no memory of the newborn accommodations where we were fed, cleaned up, cuddled and slept most of the time with those tiny little boys and girls who someday might become our mates and friends. If we were lucky and all went well for the next many decades, our visits to hospitals were few and far between. Unfortunately, for some, the stays in hospitals resulted in fre-

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan. 14 August 2019 • EP Magazine | ep-magazine.com

quent returns to secure the necessary treatments as tiny tots advanced in childhood years. For children with special health care needs, hospitals become a “second home” to receive the necessary health care that would enhance their abilities to have a healthy, productive life. For most individuals transitioning from childhood to adulthood, hospitals can be a destination for an occasional visit to an emergency room. Football, climbing trees, roller skates, car rides and other activities that cause injuries too often require necessary treatment in a hospital. Unfortunately, for some, the range of hospital services are necessary treatment for secondary and comorbid conditions related to their disability. As we age into advanced years, hospitals become a frequent reality. (These words are written by one of us [HBW] who currently is experiencing his stay for a [hopeful] minor “vacation” at a local hospital.) During our stays, we learn that hospitals are more than just buildings full of beds, equipment, and a full range of health professionals. A hospital is an institution catering to the full range of life services (ranging from the joys to sorrows). When it comes to children (especially youngsters with disabilities), a hospital is a whirlwind of changing people with strange and scary machines. No matter how much we try with changing colors of walls and pictures, play toys and loving gestures, we cannot reconstruct the security of a familiar loving home environment. As parents and grandparents, we must never underestimate the concerned efforts by dedicated members of a hospital staff (who may not reach the familiarity of a loving family), but nevertheless, make the effort and smooth out the rough edges of the stay-in wards for children (and yes for adults too).

TEENAGERS ARE ANOTHER STORY They are “certain” they are grown-ups, capable of handling their own needs, especially since they have their iPhone, iPad and laptops. The reality is that they are a mixture of confidence and fear. The input from their parents is denied as unnecessary and old fashioned. But they, too, may require needed hospital care. Fortunately, the “all caring army” of hospital personnel is a mixture of young and the not so young who relate to this new generation of patients whose life exists on and about the computer. But there are difficulties – “Google is now god” and suggestions for medications and treatment plans are reviewed (with Google) to assure the patient that all treatment recommendations fit into the information from this new god.

AS FOR OLD FOLKS (THE WRITERS’ BIAS) The older generation is increasing in numbers and costs. Hospitals, nursing homes and assisted living facilities are “growth industries.” While these businesses are “exploding” in size and expense, older hospital patients are faced with many of the same issues as in previous generations. For example: • The realities of aging, the limits of continued wellbeing, and eventual death. • End-of-life decisions. • All too often, decisions for treatment and care plans are made by others; essentially a fear of the loss of control. • Preference for a return to the familiarity of home or hospice for the final period of life.

STAY STRONG: As parents, we must never underestimate the concerned efforts by dedicated members of a hospital staff who make the effort and smooth out the rough edges of the stay-in wards for children (and yes for adults too).

ep-magazine.com | EP Magazine • August 2019 15

BACK TO OUR CHILDREN WITH DISABILITIES Whether the hospital stay is short or long term, we must never lose sight of the youngsters with disabilities caught in a world of strange and scary things. How you as parents prepare your child for these experiences prior to their hospital stay is critical. Work with the staff. Understand their difficulties. They are dedicated to improving these experiences and together with them you can ease the child’s stay in the hospital. Nevertheless, despite the needed hospital care for these youngsters, it is essential, as soon as possible, to return them to their family, school and friends; essentially to limit their isolation and not emphasize their past experiences.

RANKING OF HOSPITALS We live in an era of instant information with the touch of a computer that searches an infinite number of sources. Unfortunately, the dizzying amounts of data may well be intentionally or unintentionally biased for any number of reasons. In addition, families may have long-term established relationships with physicians who staff local hospitals. Nevertheless, with these considerations in mind, we can

EP MAGAZINE’S

search the internet to reassure ourselves that our children are receiving care in some of the more favorable recognized facilities For example, U.S. News annually reports a listing of the best children’s hospitals in the country. The most recent review lists Boston Children’s Hospital as first; followed by Cincinnati Children’s Hospital, Children’s Hospital of Philadelphia, Texas Children’s Hospital – Houston and Children’s National Medical Center, Washington DC.1

AN OVERVIEW Remember the last time you were admitted to a hospital for an emergency or general service. A long list of questions had to be answered; ranging from your health history, reasons for your current visit and (most important?) payment arrangements. You then (if possible) were assigned to a room to share with a stranger. You undressed and put on a garment that couldn’t be secured properly in the back or possibly the front. You made it to the bed and awaited the inevitable series of venous punctures to draw the necessary liquid for laboratory analysis. Meals appeared on trays that were quite different from those at home. Sleep may well have been interrupted by necessary tests and the noise from a

stranger in the next bed or from individuals down the hall. But you are an adult, most likely accustomed to these inevitabilities. Now imagine these events through the eyes of your children – especially those with disabilities who frequently are confronted with hospitalizations. Just scary and frightening! Question: How well are you and your family preparing your child with special needs for these events? Remember to seek out the assistance from those in the hospital setting who have experience in these eventualities! • 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.

References 1. U.S. News Announces the 2018-2019 Best Children’s Hospitals. Available from: https://www.usnews.com/info/blogs/press-room/articles/2018-06-26/us-news-announces-the-2018-2019-best-childrenshospitals Accessed 24, 2019.

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EP Magazine recently launched its all-new YouTube channel – access it here. This new platform provides practical advice, emotional support, and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs. Subscribe today! 16 August 2019 • EP Magazine | ep-magazine.com

PLANNING AND ADVICE

ADD AN ABLE ACCOUNT TO A SPECIAL NEEDS FINANCIAL PLAN LEARN ABOUT ACHIEVING A BETTER LIFE EXPERIENCE (ABLE) ACCOUNTS AND WHY YOU MAY WANT TO ADD ONE TO YOUR SPECIAL NEEDS FINANCIAL PLAN.

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our financial plan for special needs is made up of many parts. A Letter of Intent (LOI), government benefits, employee benefits and legal or financial structures– like a Special Needs Trust (SNT) and an ABLE account. An ABLE account is a qualified, state-established savings account that receives preferred federal tax treatment. It enables people with disabilities to budget, manage spending and save employment income or other funds to pay for disability-related expenses without jeopardizing their public assistance eligibility. ABLE and SNT: An ABLE account may be easier to access for short-term spending; it allows broader spending power – like for food and housing, all earnings are tax-free, and individuals can manage their own money. Plus, state tax deductions apply, where available. Special Needs Trusts (SNTs) can hold unlimited assets, and a 3rd party trust may be used for estate planning and family wealth transfer. Special Needs Trusts even allow distributions to fund an ABLE account, which offers families some unique planning opportunities to use both vehicles together.

ABLE ACCOUNT BENEFITS Ownership: If you’re an individual with a disability, the account is owned by you. If you’re a caregiver your loved one with a disability is the owner. While each eligible individual may have only one ABLE account, a personal representative (guardian, conservator, agent of Power of Attorney or parent) can help manage it, and multiple individuals may make contributions to it. Taxes: Contributions to an ABLE account are made with post-tax dollars, so ABLE programs and distributions for qualified disability expenses are generally exempt from federal taxation. With certain exceptions, non-qualified distributions are subject to an additional 10% tax on the account earnings. Some states provide significant tax incentives for contributions to ABLE accounts. Check your state’s plan to see if it applies to only its own plan or to any ABLE account. Contributions to ABLE accounts can also now qualify for the “Saver’s tax credit”, which can help you save on federal income taxes.

Cost: An ABLE account requires low or no startup costs, and lifetime maximums vary by state. While many are at least $300,000, some states go as high as half a million dollars. You won’t need an attorney or a trust administrator – only a minimal opening deposit, often as low as $50, and some states are even waiving the initial setup fees. Investment costs vary, so check with your ABLE plan for details.

ABLE ACCOUNT ELIGIBILITY Up to 4 million children and 8 million adults are estimated to be eligible for ABLE accounts, based on disability status and age of onset.1 Age requirement:2 You may be eligible at any age, if your disability occurred before age 26. Severity of disability:2 There are multiple ways to prove eligibility for an ABLE account: • You meet the disability requirements for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) benefits (Title XVI or Title II of the Social Security Act). • You receive a Disability Certification signed by physician, attesting to a diagnosis of a severe and limiting physical or mental impairment or a condition that has lasted or is expected to last for at least 1 year. If you meet one of these requirements, you may be eligible for an ABLE account. Talk to a financial advisor today to see if an ABLE account could improve your financial future. Action Steps: Check out your ABLE account eligibility and state requirements. • Open an ABLE account in the name of the person with a disability. • Save income, inheritances and other funds to spend on qualified expenses. • Talk to a financial advisor to get started. • Visit www.voya.com/articles/add-able-account-special-needs-financial-plan for more information. Neither Voya nor is affiliated companies or representatives provide tax or legal advice. Please consult a tax advisor or attorney before making a tax-related investment/insurance decision. * Financial Professionals are Investment Advisor Representatives of and offer securities and investment advisory services through Voya Financial Advisors, Inc., (VFA) (member SIPC). 1. Goodman, N (2015) Estimated Number of ABLE Act Participants. National Disability Institute (January 6, 2015) 2. ABLE National Resource Center: http://ablenrc.org/step-2-who-eligible

ep-magazine.com | EP Magazine • August 2019 17

HEARTSIGHT

CHRISTINA LLANES MABALOT

“I” In Aniridia In December of 2013, I gave in to my husband’s suggestion of having my eyes enucleated. After recovery, my outer appearance reflected the inner beauty of a heart that had courageously thrived through pain, especially from people’s adverse reactions to someone who looked different.

My rare disease, aniridia (Greek for the absence of the iris), made me feel like an outcast. My eyes were dull and strange-looking, not only because of the involuntary movements (nystagmus) but also due to my habit of sticking my face into whatever I needed to see, just like a cartoon detective would, but without a magnifying glass. Don’t get me wrong; it’s not as if I would have easily blended among my peers without it; I’m an oddball by nature. Sadly, I did not have a lot of people to talk to. I’d usually have mental conversations with myself, and there were times when I answered audibly, which made me appear crazy.

ANNUAL

ISSUE

HEALTHCARE “Why are you kissing the paper?” my second-grade homeroom teacher asked me on the first day of school. Born with a gift for annoying people, I retorted, “Because I love it!” I knew I was in trouble! My furious teacher commanded me to stand facing the wall at the backside of the classroom. I wondered why my teacher asked me that question in the first place, even though my mother previously had a long conversation with her about my extremely “nearsighted” vision, which everybody thought was my only disability. My visual acuity classified me as legally blind, which is familiar to most people with aniridia, but deep inside of me, I knew for sure that I had other eyerelated problems. I felt self-conscious of the involuntary eye movement, so I rehearsed keeping my eyes still in front of a mirror. I did not know that the practice made my eyes appear like they had no pupils, so children may have thought I was a ghost. I had photophobia, 18 August 2019 • EP Magazine | ep-magazine.com

and the glare from some lights made me blind as a bat at daytime. Every Monday morning, when the school’s flag ceremony was held at the grounds instead of the corridors next to the classrooms, I would close my eyes to ease the pain caused by the sunlight. One time, I was left behind on the grounds, not realizing that all the students had marched to their respective classrooms. On another occasion, several years later, I was at a cocktail party wherein strobe lights made me squint. A young man in that party even tried to pick me up saying, “You look like you’ve had one too many drinks.”

“Every Monday morning, when the school’s flag ceremony was held at the grounds instead of the corridors next to the classrooms, I would close my eyes to ease the pain caused by the sunlight. One time, I was left behind on the grounds, not realizing that all the students had marched to their respective classrooms.” Later, I learned that “aniridia syndrome” is a rare disease. With aniridia, while lack of an iris may cause light sensitivity, the real problems are the conditions which “make up” this syndrome that can cause loss of the remaining vision and other complications.

Frequent headaches eventually landed my name in the school’s regular absentees list. My headaches were so severe I imagined the angel of death locking my head under his feet. I was so immobilized I couldn’t get up nor open my eyes. I found out later that “glaucoma,” or high intraocular pressure (IOP) was the culprit for this killer pain. Glaucoma, one of the multiple eye conditions of aniridia syndrome, is one of the leading causes of blindness among patients. Thus, it is essential to have all aniridic children’s eye pressure checked at birth and every six months after that to keep it under control, because escalated eye pressure can eventually damage the optic nerve.

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was about nine years old when my siblings and I started taking pills and applying eyedrops to keep our eye pressure under control. We were prescribed “Diamox” (brand name for Acetazolamide), a medication that has several side effects including electrolyte imbalance. Diamox made me urinate every ounce of energy in my body. Initially, I loved how it made me skinny, so that it was hitting two birds with one stone; regulating eye pressure and weight loss – but eventually, I hated that the treatment made me emaciated and dysfunctional after some time. The doctors also warned that while eyedrops regulate our IOP, its long-term use would eventually cause the opacity of lenses, consequently reducing the passage of light to our eyes and, sooner or later, our vision. It was a “damned if you do, damned if you don’t” situation, but I’d risk my lenses over suffering through killer headaches anytime. At some point, my parents chose to discontinue the eyedrops, supposedly to prevent opacity of our lenses, but what we did-

PHOTOS BY PAUL LLANES

n’t know then was that since we were all born with subluxated (dislocated) lenses, opaque lenses shouldn’t have bothered us. Nevertheless, the outrageously expensive medications and visits to the ophthalmologists were draining our finances. When eyedrops were available, administering them were bonding sessions for me and my three siblings with aniridia. The four of us, side-by-side on my parents’ kingsized bed, teased and mocked one another; our laughter buffered the sting of the medication. I felt that my absenteeism was certified once the root cause of my headaches was medically established. I remember pretending to suffer from a glaucoma attack on days when I couldn’t get up for school because I was talking to my boyfriend on the phone overnight. My unsuspecting parents would write an excuse letter and I’d get off the hook. My baby brother, however, didn’t have it that easy. Like me, he frequently couldn’t get up for school because of his escalated eye pressure, although some days I think it was because he watched TV all night. I knew, because we frequently ran into each other at dawn, both doing our own thing. Regardless of the real reason, my parents brought him to the ophthalmologist every time he suffered headaches.

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ne unforgettable day, the ophthalmologist suggested laser peripheral iridotomy (LPI), a surgical procedure to decrease my brother’s IOP. It entailed making an opening through the iris to allow fluid to flow directly to the frontal chamber of the eye. My father used to preach against surgical procedures, knowing from his extensive research that such may cause our loss of vision. Stuck in a loop of medical bills, doctor visits, and checkups, he desperately gave in. I am still bewildered to this day as to why he agreed that my brother go through the surgery; this was a bitter pill to swallow for my father. The complexity of our medical condition was beyond us. Summing up having no iris, legal blindness, subluxated lenses, nystagmus, corneal scarring, close angle glaucoma, cataracts meant that we had only a small chance of surgical success. After the

SETTING SIGHTS HIGH: The author’s daughter Jem was born with aniridia. “She was blessed to have talented doctors, as well as being introduced to the Aniridia Foundation International, a non-profit organization committed to studying and researching aniridia, to stop the progression of the condition and help people who are visually and medically affected by it.” unsuccessful surgery, my father’s interaction with the family slowly declined. He distanced himself from us, distressed by the new reality he and his family had to face. It was one thing after another from that point. Since my brother never recovered from that surgery, he had to drop out of high school. Finally, ophthalmologists had to enucleate (remove) my brother’s eye to restore his quality of life. Only then was he able to continue his education. This incident scarred my heart to believe that aniridia is a “catch-22” situation; I either maintain low vision and deal with its miser-

able complications or I give up my eyes for a pain-free life. A turning point for me was when I finally decided to come to terms with aniridia years later, when I had my own family. We participated in the 2007 “Make a Miracle” medical conference and the “Make a Difference” clinic hosted by the Aniridia Foundation International (AFI). Aniridia Foundation International is a 501(c)3 nonprofit charitable organization dedicated to assisting those with low vision or blindness due to aniridia. On the first night of socialization, I was astounded to shake hands ep-magazine.com | EP Magazine • August 2019 19

with so many “aniridics” in all forms and stages of life. Before that night, I felt our family’s case was isolated because I hadn’t ever met anyone else with aniridia. It was both a comfort and a pain to realize that these people could identify with my experiences. The mystery that enshrouded aniridia slowly unveiled as I confronted this sphere of reality in my life. The free clinic did make a difference when Dr. Edward Holland declared that my left eye, which was then blind but still had a healthy optic nerve, may have a chance to see again through the stem cell transplant technology – but the procedure required the stabilization of the intra-ocular pres-

sure. Nevertheless, this ray of hope compelled me to preserve my eye by resuming medication for a good six years. It was around 2010 when my left eye started bulging out—and, my right eye, as if in rebellion for not getting as much attention, simultaneously began to shrink. My face appeared so lopsided I never left home without my sunglasses, even when it was dark. The angel of death was resurrected, oppressing me with headaches more severe than those I suffered during childhood. My cockeyed appearance slowly took over my inner self and my disposition went back and forth from congenial to depressed while my heart became sick from deferred hope.

A WORLD BEYOND VISION : UNDERSTANDING ANIRIDIA According to VisionAware.org, the term aniridia is Greek for ”without iris." It is a congenital, bilateral (both eyes) condition characterized by the complete or partial absence of the iris. Doctors usually spot aniridia when the newborn has dark eyes with no color in the iris, the ring around the pupil. Growing up, my siblings and I were diagnosed as legally blind and sensitive to lights. However, as we matured, many other eye issues were identified, like subluxated lenses, nystagmus, corneal scarring, closed-angle glaucoma, and cataracts, conditions which are associated with aniridia. With several eye issues found in a single patient associated with aniridia, these complicating factors make it challenging to achieve the primary goal of the treatment of aniridia, which is to maintain the patient’s residual vision. Aniridia results from a genetic mutation that affects the PAX6 gene, which is responsible for the formation and maintenance of the eye. However, now we also know that it plays a significant role in the development of many parts of the body, including the pancreas, central nervous system, olfactory system and parts of the brain. Thus, some patients with aniridia syndrome live with medical issues

20 August 2019 • EP Magazine | ep-magazine.com

such as diabetes, autism spectrum disorders and metabolic problems, among others, which usually occur in their childhood. The mutation of the PAX6 gene may occur sporadically, which means that neither of the parents has the aniridia syndrome, but once it occurs, it may be passed down into each successive generation. Every person with aniridia syndrome will have a 50 percent chance of producing a child with aniridia. This unfortunate statistic became true for my daughter, who was born with aniridia. But despite having the same visual impairment as mine, her circumstances have been favorable here in the United States. She was blessed to have talented doctors, as well as being introduced to the Aniridia Foundation International, a non-profit organization committed to studying and researching aniridia, to stop the progression of the condition and help people who are visually and medically affected by it. Visit www.make-a-miracle.org to learn more about aniridia.

EYES HAVE IT: (Above) A close of photograph of Jem Mabalot’s eye reveals the partial absence of the iris. Treatment of aniridia prioritizes maintaining the patient’s residual vision.

Finally, in December of 2013, I gave in to my husband’s suggestion of having my eyes enucleated. After recovery, my outer appearance reflected the inner beauty of a heart that had courageously thrived through pain, especially from people’s adverse reactions to someone who looked different.

THE SEEING “I” In hindsight, looking through the eye of aniridia, I saw a world distorted by optical filters of different ocular conditions. From afar, people looked similar, varying only in height, clothing, size, bearing, and length of hair, while places were merely outlined by structures, streets, lights, and concrete objects that looked abstract. In that world of optical illusions, I would run to hug a strange woman whom I thought was my mother, mistake a clump of hair for a dead rat, frequently board a wrong bus or vehicle, and accidentally invade the men’s restroom. It was a life marked with pain, shame and obstacles which reminded me of a society where I didn’t belong. Beyond aniridia, however, the seeing “I” perceives through my heart. It is a world beyond vision, one with exciting challenges, opportunities for growth, golden lessons, and life that aims for significance.• HEARTSIGHT Christina Llanes Mabalot is physically blind from aniridia, but has a vision. She enjoys touching people’s lives to bring out the best in them. “Heartsight” explains her ability to see with her heart. Christina earned her B.A. degree and Masters in Education from the University of the Philippines, Diliman, specializing in Early Intervention for the Blind. She later received Educational Leadership training through the Hilton-Perkins International Program in Massachusetts, then worked as consultant for programs for the VI Helen Keller International. She has championed Inclusive Education, Early Intervention, Capability Building and Disability Sensitivity programs. She was twice a winner in the International Speech contests of the Toastmasters International (District 75) and has been a professional inspirational and motivational speaker. Christina is blissfully married to Silver Mabalot, also physically impaired, her partner in advancing noble causes. Their children are Paulo and Jem, who has aniridia.

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ANNUAL

ISSUE

HEALTHCARE

WHAT TO DO WHEN THE INSURANCE COMPANY SAYS NO!

BY LAUREN AGORATUS, M.A.

Families may not know that they have options when a private health insurer or Medicaid denies a claim or reduces or eliminates a service. There can be both internal and external appeals processes depending upon the type of plan. An internal appeal is a second look by the insurance company by representatives not involved in the original decision. An external appeal is when a neutral third party independently reviews the documents. 22 August 2019 • EP Magazine | ep-magazine.com

IS IT MEDICAL OR EDUCATIONAL OR BOTH? Services needed by children with special health care needs can be medically necessary, required under the Individuals with Disabilities Education Act, or both. There is a difference between medical and educational therapies such as physical therapy (PT), occupational therapy (OT), or speech therapy in the home versus school. Sometimes, insurance companies will cut home services if the child gets therapy in school, but families can appeal if the nature of the services are different. The most common services cut are PT/OT/speech therapy and nursing. For example, a child may get therapies through either early intervention (from birth to age three) or special education (age 3-21) and still need medical services at home or in the community. The IEP (individualized education plan) team, which includes the parents, makes the decision on which related services a child needs in order to benefit from a Free, Appropriate Public Education (FAPE). Home or community-based therapies would be more focused on activities of daily living.

the remainder of the bill after the private insurer pays as much as it will cover. Do everything in writing and keep copies. Phone calls “never happened.” The starting point will be the EOB, “Explanation of Benefits,” form or denial letter. This will give the reason for either denying or cutting services. Sometimes it’s something as simple as an incorrect CPT (current procedural terminology code) that shows what was done. Alternatively, the ICD10 (International S t a t i s t i c a l Classification of Diseases and Related Health Problems), which is the diagnosis code, could be incorrect. On the other hand, it could be something as easy as the doctor’s office forgot to include their tax ID number. Many times, additional documentation is all that is required. The one item that usually turns things around for families is a doctor’s note of medical necessity. If the child has more than one condition, multiple doctors’ notes will strengthen the case if the service is treating multiple conditions. Families must make sure they keep at least one copy of everything they use in their appeal. Many times, families will have to resubmit the same information if there is a multi-step appeals process. This is particularly true for external appeals as this is the first time the independent reviewer has seen any of the information from the beginning of the process. Parents may need more support to appeal claims, especially if they are new at advocating for their child. Families need to remember that they are their child’s best

DO EVERYTHING IN WRITING AND KEEP COPIES. PHONE CALLS “NEVER HAPPENED.”

“NO” PROBLEM: Insurance companies, whether public or private, depend on families taking no for an answer, just going away, and not fighting. Remember, it’s in their financial interest to deny claims to save money.

APPEALS 101 Insurance companies, whether public or private, depend on families taking no for an answer, just going away, and not fighting. Remember, it’s in their financial interest to deny claims to save money. Most families (2/3) don’t even try to appeal. For families with both private and public insurance, this offers the best coverage and many times Medicaid (the payer of last resort) will cover

ep-magazine.com | EP Magazine • August 2019 23

“case manager” and advocate, and have a vested interest in the best outcome for their child. Parents can get free help from Family-to-Family Health Information Centers, which will give them information and support on the insurance appeals process. As a last resort, some families may need to get legal help (see Resources).

SUMMARY OF KEY POINTS FOR APPEALS ➢ Only 1/3 of families’ appeal denied claims, yet 50% of the time it’s turned around in the consumer’s favor on the first appeal. ➢Do all appeals in writing and send certified/return receipt. There is no way to prove a conversation happened, so appeals must be in writing. If it’s sent certified/return receipt, the insurance company can’t say they didn’t get the information, and there are timelines to follow. ➢Doctors’ notes can be the one thing that turns a denial around immediately. ➢Be persistent. Get all required documentation by deadlines. ➢If needed, get an advocate or legal help (see Resources). Worst case scenario, many states have Catastrophic Illness in Children Relief

THE PERSISTENT PARENT: Families need to remember that they are their child’s best “case manager” and advocate, and have a vested interest in the best outcome for their child. Funds which reimburse families for some expenses not covered by insurance (see Resources). It is important to note that even if a plan is exempt from federal regulation under the ERISA (Employee Retirement Income Security Act), families should still file appeals and copy their State Commissioner of Banking/Insurance because these could be the very same companies trying to get

state Medicaid contracts and the state should be aware of systemic problems/concerns.• ABOUT THE AUTHOR: Lauren Agoratus, M.A. is the parent of a child with multiple disabilities. She serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at SPAN, found at www.spanadvocacy.org

AN APPEALING PROSPECT : ADVOCATING RESOURCES INFORMATIONAL RESOURCES LEGAL AID BY STATE www.lawhelp.org/find-help

WEDMD How to Appeal a Rejected Claim www.webmd.com/health-insurance/how-and-when-to-appeal-insurance-claims#1

NATIONAL HEALTH LAW PROGRAM https://healthlaw.org

FAMILY VOICES/FAMILY-TO-FAMILY HEALTH INFORMATION CENTERS http://familyvoices.org

CATASTROPHIC ILLNESS IN CHILDREN RELIEF FUNDS (click on “Title V in Your State” at bottom of pag)e

LEGAL RESOURCES

https://mchb.hrsa.gov/maternal-child-health-initiatives/title-v-maternal-and-child-healthservices-block-grant-program

NATIONAL DISABILITY RIGHTS NETWORK

STATE COMMISSIONERS OF INSURANCE

www.ndrn.org/about/ndrn-member-agencies

www.naic.org/state_web_map.htm

24 August 2019 • EP Magazine | ep-magazine.com

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

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EP-MAGAZINE.COM: AN ALL-NEW DIGITAL HOME FOR THE SPECIAL NEEDS COMMUNITY

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THE NEXT STEP FOR INCLUSION:

STATE CME REQUIREMENTS ON DISABILITIES BY ANNETTE SANJURJO LIZARDO, ESQ.

Living near several medical and dental facilities serving those with special needs, my middle, teenage son with nonverbal autism spectrum disorder (ASD), has received great medical and dental attention this last decade since he was diagnosed. Unfortunately, many others with cognitive, intellectual and developmental disabilities (IDDs) are not so fortunate.

B

etween 50-60 million people nationwide have a physical or mental impairment that affects one or more major life activities (such as making a meal, bathing, or doing errands alone), and approximately 5% of those people have a cognitive disability. (US Census, Pop. Est. rev. 2018). Undoubtedly, these individuals have even more difficulty accessing adequate medical care than others within the disability community. All medical practitioners serving patients throughout the lifespan should be familiar with best practices for the delivery of healthcare to those with disabilities. A continuing medical education (CME) requirement on disabilities for all doctors (not just pediatricians) is long overdue. 26 August 2019 • EP Magazine | ep-magazine.com

In October 2018, The Health is for Everyone: Action Team (HEAT), led by the Association of University Centers on Disabilities (AUCD), helped sponsor Resolution 315 introduced by the American Academy of Pediatrics (AAP) on the “Inclusion of Developmental Disabilities Curriculum in Undergraduate, Graduate and Continuing Medical Education of Physicians” to the American Medical Association. The last clause of the resolution states, “RESOLVED, That our AMA encourage the Accreditation Council for Continuing Medical Education, specialty boards, and other continuing medical education providers to develop and implement continuing education programs that focus on the care and treatment of people with developmental disabilities.” Thanks to the American Academy of Developmental Medicine and Dentistry (AADMD), these free CMEs already exist; however, there is no legal requirement for practicing physicians to take them.

STATE REGULATORY BOARDS NEED TO REQUIRE CME ON DISABILITIES AS PART OF RENEWAL LICENSURE The American Dental Association (ADA) recently revised its code of conduct to prohibit denial of care to patients with physical, developmental or intellectual disabilities. “In cases where a dentist does not have the equipment or expertise to meet a particular person’s special needs, the code now requires them to refer the patient to an appropriate

dentist rather than simply turning them away.”1 This is a start, but not the end. The ADA’s code of conduct serves as the standard for state laws. The next step is for legislators to work with state regulatory boards and enact statutory amendments requiring CMEs on cognitive and IDDs. Research universities receiving federal funds should be required to teach their medical students on physical, intellectual and developmental disabilities, and also provide clinical experience. While some universities have been reluctant to do so, others have proactively been at the forefront of serving the disability community. For example, Since 1971, NYU College of Dentistry has run the successful Special Patient Care Program, an honors program for a small group of exceptional dental students to gain experience working with people with disabilities, but the center – the NYU Dentistry Oral Health Center for People with Disabilities, an 8,000-square-foot center renovated at the cost of $12 million located in the NYU College of Dentistry’s Weissman Building, opened this February 2019, - now fulfills NYU Dean of the College of Dentistry Dr. Bertolami’s vision of a dedicated dental home in New York City for individuals with physical, cognitive and developmental disabilities.2 Such initiative is commendable but should no longer be optional. All practitioners should be required to take CMEs on best practices to care and treat our disability community. Not only will these CMEs result in better short-term care and treatment, but also enable a smoother transition from pediatric care to adult and geriatric care. Should physicians continue to be unaware of best practices for treating patients with disabilities, thousands more will face misdiagnosis or missed diagnoses. In the AMA December 2018 issue of the Journal of Ethics, Joel M. Reynolds, Ph.D., stated, “Clinicians wield enormous power over the care and treatment of people with disabilities, a group every human will become part of over the life course… It is a power used unethically if clinicians do not actively learn about disability communities and practice disability humility.”3 Reynolds observes: Since the passage of the ADA [Americans with Disabilities Act] in 1990, people with disabilities make up the largest legally protected group in the country. In 2013, approximately 1 in every 5 adults reported a disability. Disability has always been and always will be a part of human life. Better care for the great diversity of people with disabilities – and, by extension, all peo-

ple – requires better engagement with and reflection upon the rich and complex meaning of disability. Insofar as the institution of medicine aims for just and equal care across individuals and groups, clinicians and members of society at large have a responsibility to educate themselves about disability and actively work against the effects of ableism that have too long undermined the justice and effectiveness of health care delivery. [citations omitted]. Rather than viewing those with different abilities as an inferior minority who burden society, embracing accommodations for the disability community benefits all of society.4

IF ONE BENEFITS, WE ALL BENEFIT Disability awareness and accommodations benefit all of society. For instance, sloped sidewalks at intersections not only accommodate those in wheelchairs, but the elderly, parents with strollers, bicyclists and skaters also benefit. Similarly, handrails in public bathroom stalls not only assist the handicapped, but also mitigate liability by helping the elderly and small children when getting on/off the toilet.5 With physicians satisfying CMEs on disability awareness, medical practitioners will be able to welcome and provide more effective treatment for those with cognitive disabilities, just as their facilities have become more accessible to those with physical disabilities in the last few decades. Three years ago, the April 2016 issue of the AMA Journal of Ethics focused on key ethical concepts of the treatment of patients with intellectual disabilities. George Estreich wrote a personal narrative regarding his daughter and misperceptions about persons with disabilities. He commented on “the perception that Down syndrome is the ‘good’ special need, the appealing one, which seems unfair to kids with behavioral difficulties,” and noted that, “People with Down syndrome now have a life expectancy of around 60 [citation omitted]. If we think of them as permanent children, we will be less able to imagine a place for them in the world as adults.”6 Estreich’s comments on aging and behavioral challenges faced by some within the disability community are essential to the discussion on the future of healthcare delivery and disabilities.

“All medical practitioners serving patients throughout the lifespan should be familiar with best practices for the delivery of healthcare to those with disabilities. A continuing medical education requirement on disabilities for all doctors (not just pediatricians) is long overdue.”

1. Bernhard, Blythe. (February 28, 2019). Dentists no longer allowed to turn away patients due to disabilities, Disability Scoop. Retrieved from https://www.disabilityscoop.com/2019/02/28/dentists-turn-awaydisabilities/26093/. 2. Burger, David. (February 26, 2019). NYU Dentistry Oral Health Center for people with disabilities opens to expand access to care for empire state,” ADA News. Retrieved from https://www.ada.org/en/publications/ada-news/2019-archive/february/nyu-dentistry-oral-health-center-for-people-with-disabilitiesopens?utm_source=adaorg&utm_medium=featuredstorybox&utm_content=disabilities. 3. Reynolds, Joel M. (December 2018). Three things clinicians should know about disability. AMA Journal of Ethics, 1181-1187. doi: 10.1001/amajethics.2018.1181.

4. Recent plastic straw bans have pitted recycling concerns over accommodations for those who are challenged with life skills such as self-feeding. (See Hitselberger, Karin. (July 12, 2018). Plastic straw bans are the latest policy to forget the disability community. The Washington Post, PostEverything Perspective. Retrieved from https://www.washingtonpost.com/news/posteverything/wp/2018/07/12/plastic-straw-bansare-the-latest-policy-to-forget-the-disability-community/?noredirect=on&utm_term=.a0134d4656ae). The proposed bans evoked memories of pre-World War II Nazi Euthanasia Programs aimed at those deemed “unworthy of life:… who… because of severe psychiatric, neurological, or physical disabilities represented both a genetic and a financial burden on German society and the state.” (Euthanasia Program (n.d.). In Holocaust Encyclopedia online. Retrieved from United States Holocaust Memorial Museum. https://encyclopedia.ushmm.org/content/en/article/euthanasia-program). This topic deserves its own comprehensive discussion. For purposes of this paper, suffice it to say that similar bans and programs will affect more of our aging population in the years to come. 5. For example, the California Architects Board has a continuing education requirement on Disability Access. (See https://www.cab.ca.gov/licensees/ce/ ). 6. Estreich, George. (April 18, 2016). An open letter to medical students: Down syndrome, paradox, and medicine. AMA Journal of Ethics, 438-441. doi:10.1001/journalofethics.2016.18.4.mnar1-1604.

ep-magazine.com | EP Magazine • August 2019 27

FLORIDA’S INCREASING NEED FOR CMES ON IDDS

Inclusive Communities/UCEDD.8 (See http://aadmd.org/page/pedd-webinarseries). This training should no longer be optional but a requisite part of continued licensure in Florida and nationwide to better serve our aging population with and without disabilities.•

According to the U.S. Census Bureau, as of 2017, over 13.5% of Florida residents had a disability. Retirees continue to flock to Florida, and some bring their adult children with disabilities. Although it is the fastest growing state in the nation, to date there Special thanks to Stacey Hoaglund; Ann and Rud Turnbull, Esq.; Dr. is no mandated CME on disabilities for Florida physicians. It is Steve Perlman, Special Olympics Liaison, and Past-President of the paramount for Florida and other AADMD; Dr. Rick Rader, Dir., retiree-friendly states to impleHabilitation Center of Orange ment best practices to successGrove Center, V.P. of Public fully manage the increased Policy for the AADMD, Board number of patients with cogniMember of the American tive and intellectual disabilities Association on Health and who will be aging over the next Disability, Emeritus Advisor to few decades. All sub-specialists, the Agency for Healthcare not just pediatricians, should be Research and Quality of the cognizant of these best pracU.S. Department of Health and tices. Human Services, and on the To date, Florida physicians Special Olympics are held to a lower standard of International, Global Medical continuing education than Advisory Committee. teachers; unfortunately, this is the status quo across most of ABOUT THE AUTHOR: our nation. As per the Florida Annette Sanjurjo Lizardo is mom to Board of Medicine, Florida three lovely children, wife to Tony physicians must satisfy 38 credher husband of over twenty years, it-hours of CME, including 2 WELCOME CHANGE: Courses on disability awareness for physicians a lawyer, parent advocate, and credit-hours on Domestic already exist and their mandated requirement will pave the way graduate of Florida’s Partners in Policymaking (FL ’18) sponsored by Violence, 2 credit-hours on to improved healthcare delivery and access to all. This training the FDDC. Questions and comshould no longer be optional but a requisite part of continued Medical Errors, and since Fall ments may be sent to: licensure in Florida and nationwide to better serve our aging 2018, 2 credit-hours on [email protected] Substance Abuse (due to the population with and without disabilities. opioid crisis) every third biennium. (See https://flboardofmedicine.gov/renewals/medical-doctor-unrestricted). A glarBibliography ing omission is a minimum 2 credit-hour course on any type of American Medical Association Code of Medical Ethics. (2019). Retrieved from https://www.amadisability. Meanwhile, teachers are required to take a professional assn.org/sites/ama-assn.org/files/corp/media-browser/principles-ofmedical-ethics.pdf. Bernhard, Blythe. (February 28, 2019). Dentists no longer allowed to turn away patients due to disdevelopment (PD) course on disabilities to better serve students abilities, Disability Scoop. Retrieved from https://www.disabilityscoop.com/2019/02/28/dentists-turnwho have either an undiagnosed disability or those diagnosed awaydisabilities/26093/. Burger, David. (February 26, 2019). NYU Dentistry Oral Health Center for people with disabilities and included in general education (“typical”) classrooms. opens to expand access to care for empire state,” ADA News. Retrieved from Inclusion is intended to extend from the classroom to the work- https://www.ada.org/en/publications/ada-news/2019-archive/february/nyu-dentistry-oral-health-centerplace and community at large, including medical facilities. Tying for-people-with-disabilitiesopens?utm_source=adaorg&utm_medium=featuredstorybox&utm_content=disabilities. ADA compliance with IDD training 7 for continued receipt of fedEstreich, George. (April 18, 2016). An open letter to medical students: Down syndrome, paradox, and medicine. AMA Journal of Ethics, 438-441. doi:10.1001/journalofethics.2016.18.4.mnar1-1604. eral funds is one way to benefit all patients. Euthanasia Program (n.d.). In Holocaust Encyclopedia online. Retrieved from United States Courses on disability awareness for physicians already exist Holocaust Memorial Museum. https://encyclopedia.ushmm.org/content/en/article/euthanasia-program. Florida Board of Medicine (n.d.). Retrieved March 1, 2019, from and their mandated requirement will pave the way to improved https://flboardofmedicine.gov/renewals/medical-doctorunrestricted/. healthcare delivery and access to all. As part of its FRIEND Hitselberger, Karin. (July 12, 2018). Plastic straw bans are the latest policy to forget the disability Residency Pilot Project, the American Academy of Developmental community. The Washington Post, PostEverything Perspective. Retrieved from https://www.washingtonMedicine and Dentistry has a Physician Education in post.com/news/posteverything/wp/2018/07/12/plastic-straw-bans-are-the-latest-policy-to-forget-the-disability-community/?noredirect=on&utm_term=.a0134d4656ae. Developmental Disabilities (PEDD) webinar series with up to 12 Reynolds, Joel M. (December 2018). Three things clinicians should know about disability. AMA credit hours for free sponsored by the U.S. Department of Health Journal of Ethics, 1181-1187. doi: 10.1001/amajethics.2018.1181. United States Census Bureau. Retrieved March 1, 2019, from and Human Services, Administration on Developmental https://www.census.gov/data/tables/2017/demo/popest/nation-total.html (last revised Sept. 2018). United States Census Bureau National Projections. Retrieved on March 1, 2019, from Disabilities and the Florida Developmental Disabilities Council, https://www.census.gov/content/dam/Census/ library/visualizations/2018/comm/popprojections-1.pdf. Inc., with additional support provided by the Florida Center for 7. The U.S. Department of Justice, Civil Rights Division, has long focused its Barrier-Free Healthcare Initiative (2012) to enforcing the ADA in three main areas: (1) promoting effective communication through auxiliary aids to those who are deaf or suffer from hearing loss; (2) physical access to medical facilities for those with mobility disabilities; and (3) equal access to healthcare for those with HIV/AIDS. See https://www.ada.gov/usao-agreements.htm.

28 August 2019 • EP Magazine | ep-magazine.com

8. Each webinar is accredited by the American Academy of Family Physicians (AAFP). A similar webinar series also exists on their website that is accredited for nurses and nurse practitioners.

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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How StateS are GettinG involved in Genetic ServiceS CONTRIBUTED BY NYMAC

“Many states recognize that having a personal diagnosis or a child diagnosed with a genetic condition can be a new and worrying experience for most. It is important to understand the genetic condition(s) specific to you and/or your family and have the resources you need readily available. To understand the steps states have taken to ensure better genetic services, it is important to know where it all starts. WHAT IS NEWBORN SCREENING AND WHY IS IT IMPORTANT? All states have a newborn screening program. Newborn screening refers to medical tests performed to identify babies with certain conditions, the majority of which are genetic. A small blood sample is collected by pricking the heel of a newborn baby, generally 2448 hours after birth. Every state has their own panel of tested conditions in hopes of early detection and treatment. For most of these conditions, this leads to a better outcome for the newborn. Newborn screening programs work closely with health care providers to ensure newborns with abnormal test results receive appropriate confirmatory testing and treatment. After a child is diagnosed with a genetic condition, parents may be at a loss for next steps. To better serve families, certain states have come together in hopes of creating valuable resources for individuals and families in need.

NYMAC REGIONAL GENETICS NETWORK The New York-Mid Atlantic Consortium (NYMAC) is one of the seven Regional Genetics Networks in the United States that is funded by the Genetic Services Branch in the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau. It aims to serve individuals and families identified as having genetic conditions or at risk for genetic conditions through newborn screening or at any time throughout their lifespan. The NYMAC region includes the states of Delaware, Maryland, New Jersey, New York, Pennsylvania, Virginia, West Virginia, and the District of Columbia. Individuals from our region with genetic con30 August 2019 • EP Magazine | ep-magazine.com

ditions and their families, advocates, healthcare professionals and public health professionals collaborate to ensure that individuals with genetic conditions and their families have access to quality care and genetic services. The NYMAC Regional Genetics Network (RGN) is consistently working to achieve our goals to better serve individuals and families of our region. Our goals include: • Increase the number of individuals or families within the geographic area served by the RGN. • Increase the number of medically underserved patients served by each RGN. • Increase the number of primary care providers using RGN resources. • Increase the percentage of clinical sites that use telehealth/telemedicine to provide genetic services. • Increase the number of medically underserved patients receiving genetic services through telemedicine visits. The NYMAC RGN works hard towards assisting individuals and families with their genetic service needs, including connecting people with the appropriate genetic services. It is important to us to work at our goals to ensure all those in need in our region are being served. To meet our goals, our region has many different projects.

GENETICS SERVICES REFERRAL PHONE LINE A project that has recently started is our Genetics Services Referral Phone Line. The purpose of the phone line is to connect people looking for genetic services with a health care provider who knows about genetics. Genetic services help diagnose or give information to people at higher risk for genetic conditions. They may also include lab tests, genetic counseling, and education. When receiving genetic services, individuals may be seen by a doctor who specializes in genetics (a medical geneticist) and/or a genetic counselor. Genetic counselors are health professionals who have been specially trained in human genetics and counseling skills. Genetic counselors meet with individuals to provide a risk assessment based on personal and/or family histories and discuss the genetic testing process and options (as appropriate). They also provide support for individuals who have or are at risk for a genetic condition, and act as a resource for individuals, families, and other health care providers.

PHOTO COURTESY NCCRCG.ORG

newborn ScreeninG proGramS work cloSely witH HealtH care providerS to enSure newbornS witH abnormal teSt reSultS receive appropriate confirmatory teStinG and treatment. to better Serve familieS, certain StateS Have come toGetHer in HopeS of creatinG valuable reSourceS for individualS and familieS in need. Speaking with a genetic counselor can help if you have questions or need more information about: • Inherited diseases in your family • Prenatal counseling if you are pregnant or thinking about becoming a parent • Testing for inherited conditions • Steps to take, such as screenings, if you are at risk for hereditary cancers WHO CAN BENEFIT FROM THE PHONE LINE SERVICES? The phone line is available for anyone to call for help in locating genetic services within the region. Both individuals and healthcare providers may benefit from the services provided by the phone line. The phone line can be a resource for healthcare providers or familyled organizations, by allowing them to refer individuals to the phone line or calling in with questions they may have about the availability of genetic services. HOW DOES THE PHONE LINE WORK? The phone line is only available certain days and times throughout the week, with hours of operation listed on NYMAC’s website (wadsworth.org/nymac/referral). For individuals looking for information outside of phone line operating hours, voicemail services are available, and the NYMAC website has a message box that allows callers to send an email message with their contact information. Staff typically respond within two business days. WHAT CAN CALLERS EXPECT DURING THE CALL? • They will be asked to enter their zip code to find genetic services in their area.

• They will be asked to explain their questions, so they can be connected to the right services. • The call will not be recorded. • Phone line staff cannot give medical advice. Based on the zip code provided, the locations of the nearest in-person genetics services can be provided. However, we understand that travel to these sites may not be feasible for some individuals or families, and NYMAC can provide additional options. There are some medical institutions and other companies that provide genetic counseling services via telemedicine, which would mean that appointments may be able to be completed by telephone or video conference at an office closer to your home. The callers wanting information or support about a genetic disease may also be given information about the Genetic and Rare Diseases Information Center (GARD) at National Institutes of Health (https://rarediseases.info.nih.gov). To increase access to quality genetic services, a Resource Repository developed by the National Coordinating Center for the Regional Genetics Networks (https://nccrcg.org/resources) is also available to browse and explore.

RESOURCES FOR HEALTH CARE PROVIDERS To achieve NYMAC’s goals to better serve individuals and families of the region, resources for health care providers are also being developed. NYMAC has recently published “When to Refer” documents for health care providers to assist in identifying patients who may benefit from a genetics referral.

Genetic risk assessment and testing can be helpful in aiding in the care of individuals with concerns for a personal or family history of genetic conditions. Genetic testing and results can also impact medical management recommendations for an individual, inform unaffected individuals of possible future risks to themselves or other family members, and guide appropriate medical screenings. Knowing when it may be appropriate for an individual to be referred to a genetics service provider can be an essential first step in the diagnosis and management of genetic conditions. These “When to Refer” documents are available on the NYMAC website. Currently, referral information is available for cancer genetics services (wadsworth.org/cancer-referrals) and pediatric genetics services (wadsworth.org/pediatric-referrals). Additional documents are in development.•

NYMAC is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part an award totaling $1,800,000 with 0 percent financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit HRSA.gov

ep-magazine.com | EP Magazine • August 2019 31

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HEALTHCARE Genetic counselors work with families to answer the important questions: Is this test important? Will insurance cover this test? What does this result mean? Is there a treatment? What happens next?

GENETIC COUNSELORS YOUR PARTNERS IN NAVIGATING THE EXCITING (AND SOMETIMES SCARY) WORLD OF GENETICS BY DAWN LANEY, MS, CGC, CCRC

When Angie and her husband learned that they were pregnant with their first child, they were over the moon with excitement. They came down to earth with a bump, though, after talking with their doctor about her age and family history, which made them think about the baby's increased risk for some genetic conditions. Fortunately, they were quickly referred to a certified genetic counselor who helped guide them through the risks and genetic testing options for their pregnancy.

32 August 2019 • EP Magazine | ep-magazine.com

“I

t was all kinds of weird and uncertain – so many different genetic issues in our families, and I was ‘advanced maternal age’. Did we really need to do a test that might endanger the baby?” Angie recalls. “Talking to our genetic counselor really helped us figure it all out. She was great – empathy combined with tons of knowledge. Exactly what we needed.” After the meeting with their genetic counselor, the couple felt comfortable making testing plans that felt right to them and that allowed them to focus back on the exhilarating adventure of having their first baby. Like Angie’s experience, the news that something is “different” about a child’s growth, development, or interaction with the world can be life-changing. The concern may arrive suddenly, delivered by a doctor, or gradually, recognized by a parent over time as an infant or child ages. Families find themselves juggling countless doctors’ appointments while trying to understand complex medical information. If a genetic evaluation and testing is a part of this journey, a board-certified genetic counselor can make huge difference in the experience. Genetic counselors are healthcare professionals who are specially trained in medical genetics and counseling in order to serve as translators, advocates, health educators, and, sometimes therapists to help patients and families navigate their emotional genetic journey. Genetic counselors work with families to answer the important questions: Is this test important? Will insurance cover this test? What does this result mean? Is there a treatment? What happens next? Genetic counselors also explain the implications of the testing to the non-geneticist doctors working with the patients so that everyone is on the same page moving forward with a patient’s care plan. Some of the important topics genetic counselors may cover in a genetic counseling session include: • Review of patient medical history to learn if there are any clues suggesting an underlying genetic cause of medical issues; • Collection of family health history to search for signs of a possible genetic condition or disease; • Discussion of different genetic condi-

tions or diseases suggested by medical genetic condition or predisposition. Other history, testing, or family history; times, a family or patient may seek help • Review of available genetic testing understanding genetic testing after comoptions and what they may or may not pleting a direct-to-consumer testing option tell us about a patient and their family’s like 23andMe or Helix. Still other patients health; will self-refer for genetic counseling to • Help with patient/family decision-maklearn if there is any chance a series of ing about whether to pursue the differhealth issues could be genetic. Depending ent genetic testing options; on the reason for the referral, genetic • Provision of genetic testing results and counselors may be practicing as part of a help putting them into context; medical care team such as medical genet• Help with navigating any information ics, cardiology, oncology, neurology, or and decisions regarding treatment and high-risk obstetrician/gynecologists clinical trial options; (OB/Gyns) or may also work independently • Discussions about the best ways to in a private practice. carry out the recommended tests and doctors’ visits before and after diagnoenetic counselors see both chilsis; dren and adults. In adults, • Support of patients and families by consometimes a genetic answer is necting them with useful resources and suggested only after long years advocacy groups. of trying to figure out why complicated The benefits of working with a genetic health problems are happening. For examcounselor are clear to board-certified ple, Dave, who is living with the genetic genetic counselor condition cutis laxa, Charlotte Peinhardt, notes “There were GENETIC COUNSELORS who has learned that clues that I had a ARE HEALTHCARE “In order for many genetic condition PROFESSIONALS WHO patients and families from the time I was ARE SPECIALLY TRAINED to become empowborn, but it took 60 IN MEDICAL GENETICS & ered medical advoyears, a lot of tests, COUNSELING IN ORDER TO cates, it can be very many doctors, an SERVE AS TRANSLATORS, important to work exome, a reanalysis of ADVOCATES, HEALTH with a genetic counthe exome, and the EDUCATORS & SOMEselor who helps them personalized attenTIMES THERAPISTS TO navigate the genetic tion of a dedicated HELP PATIENTS evaluation process, genetic counselor to & FAMILIES but also addresses the finally find the NAVIGATE connected emotional answer for why my THEIR and psychological sister and I have our EMOTIONAL impact of being on health problems.” GENETIC this journey.” Her Depending on the JOURNEY. belief is supported by goal of the genetic several studies counseling session including that of researcher and certified and the role of that particular genetic genetic counselor Robert Resta, who found counselor, genetic counseling may occur “genetic counseling tends to improve infor- over one or two visits related to a specific mation recall, improve psychological well- topic. This is often the case for counseling being, and is generally well-regarded by about increased risks found during pregpatients.” nancy or cancer predisposition testing. For Genetic counselors can join a patient’s other patients and referrals, the genetic medical team at any stage of their health counselor may be part of a long-term care journey. Many patients are referred to see a coordinator team with annual visits, particgenetic counselor for genetic testing that ipation in research, and coordination of may provide important information related care. An example of genetic counselors in to medical care. This may be when there this role are those who are part of a center are signs of a genetic condition in a patient, of excellence for a specific condition. In or an individual has a family history of a this role, the genetic counselor works with

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the patient and family for many years. missed by healthcare providers not trained Kim, a patient living with a life-impacting in medical genetics. Unfortunately, most genetic condition called Fabry disease, has genetic counselors are located in major been seen at a center of excellence that academic medical centers and large hospiincludes genetic counselors and sums up tals in urban or in some cases suburban her patient-genetic counselor relationship areas. This means that access to genetics in this way: “Over 20 years I have had two can be limited by distance, but also by the genetic counselors, both knowledgeable, time needed to travel to these centers, typunderstanding, and empathetic. They have ically during normal business hours (time shown me true compassion and I am off work, time away from family responsihappy to say they were always my advo- bilities). Telemedicine is a more flexible cate. They have and will continue be in my option (often with evening and weekend life through all of its ups and downs.” appointments) which increases access to Not all genetic counselors work with genetic services by removing barriers.” patients; genetic counselors can work Telemedicine genetic counseling options within genetic testing laboratories and have extended the reach of the approxipharmaceutical companies. These genetic mately 5,000 board certified genetic councounselors focus on education, patient selors in the United States to help patients advocacy, and interpretation of genetic and families beyond the standard in-perresults for patients and healthcare son appointment. Access to genetic counproviders. They can be very helpful in selors via telemedicine can occur through making sure that healthcare providers and academic medical centers and programs pharmaceutical team think about how best such as Oregon Health and Science to convey information about genetics and University (https://www.ohsu.edu/telemedicine/teletesting to patients and families. genetics-consultations) and Emory University’s With the rapid explosion of genetic JScreen carrier screening program, but also knowledge and innovations in genetic test- through private telemedicine companies ing, the demand for such as GeneMatters, WITH genetic counselors is Genome Medical, THEIR growing daily. To InformedDNA, Metis FLEXIBLE meet this demand, Genetics, Clear DEGREE & genetic counselor Genetics , Watershed career options and DNA, and others that TRAINING, roles have broadened. provide a variety of GENETIC With their flexible “live” genetic counCOUNSELORS CAN HELP degree and training, seling sessions PATIENTS & FAMILIES genetic counselors through easily accesNAVIGATE & UNDERSTAND can help patients and sible telehealth platTHE COMPLICATED families navigate and forms. In addition, WORLD OF GENETICS IN understand the comgenetic counseling DIFFERENT WAYS. plicated world of after genetic testing is genetics in different ways. often provided free of charge by laboratoTelemedicine is one important innova- ries such as PerkinElmer Genomics and tion in genetic counseling that has expand- Invitae. ed in recent years to meet the demands. Further expanding access to genetic The goal of telemedicine is to provide real counselors’ knowledge beyond in-person time, interactive appointments between and telemedicine appointments, there are patients and genetic counselors who are in now online consumer-focused genetics two different locations via phone, online, resources that can help provide accurate or video application. As Erynn Gordon, MS, information about genetic conditions and LCGC, a genetic counselor and vice presi- resources to patients and families. These dent of clinical operations at the genetic patient-friendly sites are not substitutes for telemedicine company Genome Medical, genetic counseling, but many are written eloquently explains, “Genetic counseling by genetic experts and can answer many can help identify familial risks, or patterns common questions about genetic disease. of symptoms suggesting a genetic diagno- Accurate and helpful websites in this catesis in an individual or a family that may be gory include: The Genetic and Rare 34 August 2019 • EP Magazine | ep-magazine.com

Diseases (GARD) Information Center run by the National Institutes of Health (NIH) (https://rarediseases.info.nih.gov), The Genetic Alliance’s Disease InfoSearch (https://diseaseinfosearch.org), National Organization for Rare Disorders (NORD)’s Rare Disease Database (https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/), and ThinkGenetic (https://www.thinkgenetic.com/diseases).

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ombining artificial intelligence technology and genetic information, there are also genetic information assistant chatbots that can accurately answer questions about genetics, genetic testing, and insurance from companies such as Metis Genetics and Clear Genetics. In some cases, these resources allow you to submit your specific questions and receive responses. This process does not substitute for genetic counseling but does provide information that helps patients and family members better understand the science behind the genetics. Increased access to genetic testing and a better understanding of how that information can be useful in medical care means that the need for genetic counselors will continue to grow. Fortunately, genetic counselors are preparing to meet that need and make sure that the testing is translated into useful information for families seeking answers and next steps through a variety of delivery services. Genetic counselors will continue to be active partners for patients and families in navigating the exciting (and sometimes scary) world of genetics. Interested in talking with a genetic counselor or learning more about genetic counseling? Visit the National Society of Genetic Counselor’s consumer website at http://www.aboutgeneticcounselors.com

ABOUT THE AUTHOR: Dawn Laney, MS, CGC, CCRC is a genetic counselor, assistant professor, clinical researcher, program leader of the lysosomal storage disease center, and director of the genetic clinical trials center in the Department of Human Genetics at Emory University in Atlanta, Georgia. She is a co-founder of ThinkGenetic, Inc. which empowers patients who want to know about possible genetic causes for their medical issues or obtain real-life answers to their questions about the impact of living with a genetic disease. She also enjoys writing children’s books (most of which are about living with a genetic disorder).

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Obstructive Sleep Apnea An Underdiagnosed Chronic Disorder BY PAUL LEVINE DDS, DAVID FRAY DDS, MBA AND BEN F. WARNER, MS, DDS, MD

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leep is essential for normal growth and development in children and adults. Proper sleep is vital for our bodies to function at an optimal level and even help prevent chronic diseases. Obstructive sleep apnea (OSA) is a common sleep related breathing disorder characterized by recurrent collapse of the upper airway during sleep.

36 August 2019 • EP Magazine | ep-magazine.com

bstructive sleep apnea leads to recurrent episodes of hypoxemia (reduced blood oxygen) with resulting arousals from sleep and sleep fragmentation. This results in major fluctuations in blood pressure and increased sympathetic activity leading to an increased risk of cardiovascular diseases, diabetes, excessive daytime sleepiness, depression, and cancer to name a few. Recent studies put the prevalence of obstructive sleep apnea (OSA) at 34% in men and 17% in women. It is now thought that this disease is the number one chronic disease of industrialized countries. It is also grossly underdiagnosed with only 15% of patients being diagnosed that have OSA.

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Obstrucive Sleep Apnea: Questions & Answers How do I know if a family MEMBER HAS OSA? The most common symptoms are snoring, witnessed pauses in breathing, and daytime sleepiness. In addition, poor quality of sleep can lead to cognitive decline, changes in childhood behavior, and reductions in normal growth and development in children. If you become suspicious that either you, a family member or friend may have OSA, then you should discuss this with your family physician or dentist. They are trained in recognizing the signs (what the doctor sees or assesses) and symptoms (what the patient feels) for initial screening.

What is the cause of OSA? A major cause of OSA is due to the tongue and soft palate blocking the airway during sleep. Does your child have large adenoids, tongue and tonsils? Are they congested and have difficulty breathing? Are you concerned about the frequency of upper respiratory infections? If so, OSA risk should to be evaluated. The current gold standard for testing for OSA is a polysomnogram that will record how many times a night the airway closes or partially closes. This is performed in a sleep facility that is overseen by a boarded sleep physician who will interpret the sleep study.

Is this a problem for individuals with intellectual disabilities? OSA affects people with and without disabilities. However, adults with obesity and people with restricted airways are more at risk. Research has shown that people with OSA and Down syndrome are more at risk for health issues than other developmental disabilities. The National Down Syndrome Society

(NDSS) promotes awareness of OSA for individuals at risk. Their website states: “There is a 50-100% incidence of obstructive sleep apnea in individuals with Down syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 — 4 years. The overall incidence of obstructive sleep apnea increases as children grow older” (Source: www.ndss.org/resources/obstructive-sleep-apnea-syndrome).

Additionally, the NDSS is concerned about the risk for cardiovascular issues exacerbated by sleep- disordered breathing and the risk of increased high blood pressure in the arteries of the lungs (pulmonary hypertension).

Why Individuals with Down syndrome? The shape of the oral pharyngeal airway is the reason why people with Down syndrome have obstructive sleep apnea (OSA) at a higher rate. They have narrower air passages, a larger than normal tongue, and enlarged adenoids and tonsils.

What are the treatments for OSA? Once diagnosed, the recommended treatment could include CPAP (continuous positive airway pressure), oral appliance therapy, soft tissue surgery, or hypoglossal nerve stimulation. This can include healthcare providers with various credentials. These sleep specialists can be physicians (internists), surgeons (otorhinolaryngologist), dentists (dental sleep medicine), and others specially trained in OSA. Dentists are in a unique position in that they examine the oral cavity and associated structures where sleep apnea originates and can refer to a sleep physician for definitive diagnosis. Research studies have demonstrated that even after the most

common surgical intervention, which is removal of adenoids and tonsils, that individuals with Down syndrome can have persistent obstructive sleep apnea and need further treatment.

Why have I not heard about this before? The education of sleep apnea is increasing in medical and dental schools across the country to aid in early diagnosis and treatment of more patients. The goal is to increase the public awareness of this chronic disease to reduce the number of patients that present to their physicians and dentists with risk factors of hypertension, type ll diabetes, depression, and other cardiovascular diseases. The obesity epidemic in the United States has contributed greatly to OSA becoming such a chronic disease. This should be addressed along with reducing other risk factors for OSA. Many dentists today are trained in recognizing the risk factors for obstructive sleep apnea and play an integral role in reducing the ill health effects of this chronic disease. The American Dental Association is now recommending that every patient be screened for the risk factors for OSA.

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e have heard for decades that it is important to get a good night’s sleep. Now, we have supporting research. This really can improve your quality of life.•

ABOUT THE AUTHORS: Paul Levine DDS / Assistant Professor, University of Texas Health Science Center at Houston (UTHealth) School of Dentistry, Diplomate American Board of Dental Sleep Medicine. David Fray DDS, MBA is Associate Professor University of Texas Health Science Center at Houston (UTHealth) School of Dentistry, Department of General Practice and Dental Public Health. Ben F. Warner, MS, DDS, MD is Clinical Associate Professor, University of Texas Health Science Center at Houston (UTHealth) School of Dentistry, Department of General Practice and Dental Public Health.

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PATHOGRAPHY of DEMENTIA BY PATTI WADE, CDCCI, AMYJO SCHAMENS, BCBA AND RICK RADER, MD

Educating and training caregivers, clinicians, families, therapists, counselors and policy makers about dementia is one of the key offerings at the Orange Grove Center for Aging, Dementia and Longevity. The Center was created to address the growing numbers of individuals with intellectual and developmental disabilities, particularly with Down 38 August 2019 • EP Magazine | ep-magazine.com

syndrome, with the co-morbidity of Alzheimer's disease and related dementias. One of the teaching exercises is the use of the “pathography,” a narrative written from the perspective of the patient. It describes what and how the illness is “doing” to the patient, its impact on their thoughts, actions and behavior. ILLUSTRATION PROVIDED BY RICK RADER, MD

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he Pathography Blog offers, ”A pathography is a narrative that gives voice and face to the illness experience. It puts the person behind the disease in the forefront and as such is a great learning opportunity for all care givers and fellow sufferers.” At Orange Grove, we expanded the narrative to personify the disease. How does the disease, and the disorder see itself? What is the intention of the disease and how does it go about achieving its goals? During a recent training class for “Dementia Capable Care,” we

FOR THOSE IMAGINING THAT THEY HAD DEMENTIA “I’m slowly forgetting my normal life and memories. I used to be very independent and now I need small amounts of help with everyday living. I feel like a burden to my family. I want to be my old self, living my normal life.” -- Laura M. “I’m starting to see slow changes in myself. It started with small things like remembering where I put things, or where they were supposed to go. I’m starting to realize that I can no longer do the things that I have always done, without help. I often feel afraid and tend to get upset very easily. I know that I am slowly declining and soon will not be able to do much of anything. I feel very afraid and lonely.” -- Courtney F. “My knee hurts. My head is achy, but it’s time to wake up. Time to start the day! Time to get moving! The floor is so cold on my feet. Time to wash up, shave. Why is it so dark? Why does my knee hurt? I cannot find my clothes, my wife sets them out for me every night, she even picks out my belt and shoes. Where are my clothes? Where is my wife? Honey, are you okay?" *Lights turn on. ‘Mr. Smith, it's 2 am! What are you doing awake? Oh, my, you’ve had an accident! Let me clean you up.’ ‘Where is my wife?’” -- Sami C. “I have Alzheimer’s. I don’t see or feel the world in the way I used to. Things are fundamentally different, and it’s my reality, irrespective of whether it’s yours. I forget — small things and large. Things that you know innately are now connections I can't make. This is a journey for me that ends in oblivion, but I still will feel your presence and hope your being with me will end in growth, understanding and appreciation.” -- Anonymous

asked the participants to pretend they were either a person with Alzheimer's (or a related dementia) or that they were the disease itself. We then asked them to write down their thoughts. The participants were then given the opportunity to read their work out loud. The reaction was palpable. There was eerie silence after some of the readings. There were sighs, moans and grimaces, often accompanied with the exaggerated closing of their eyes. This is what they shared:

FOR THOSE WHO WERE “THE DISEASE” “I am here to erase time, memories, hopes, dreams. I won’t quit until you disappear inside yourself. I will not only affect you, but I will cause extreme grief with anyone you love or know. I am an unstoppable force without a cure. You have been warned, but you won’t remember and those around you will suffer along.” -- Leslee H. “I intend to slowly misplace words in the brain, next I will mix familiar places with unknown ones. After that I will go after people that you are closest to and erase them, one by one. After all of that is completed, I will go after the senses. Soon enough there will be nothing or no one left.” — Katie M. “I am going to slowly take your abilities and memories and make them disappear. You are not able to dress, shower, drive your car or live by yourself any more. You will forget... remember... family and friends until your mind is blank. Slowly you will not be able to walk, eat and breathe.” — Tracy “I am going to slowly take your memories. I will first cause you to be forgetful. Then I will make you unable to take care of yourself, unable to make safe decisions and disoriented to the world around you. I will eventually cause your death. I will do this by cutting off pathways in your brain which allow you to think properly. At the end you will be so impaired that you forget how to swallow and even how to breathe. Then I will have won.” -- Anonymous

“I will slowly enter your life and steal your memories, abilities and all of your relationships. I will give you anxiety, fear and make you withdraw into a living hell. I will do all I can to destroy you and the ones you love.” -- Anonymous “I am going to confuse you. I am going to make you feel like you don’t matter. I am going to take away your fine and gross motor skills. I am going to take away your ability to work. Remember when you went on vacation with your family? No, you don’t. I took that memory away. Your ability to read has diminished, now you are read to, and I’ll pick the story. As a matter of fact, I’ll make the rest of your decisions from now on.” -- Dana C. “I will take over your entire life as you know it. I will progress over time. You will no longer walk the same, have the same memories, small or feel the same or recognize your family. I will destroy your brain. I will take your life and you can't stop me.” -- Stacie B.•

ABOUT THE AUTHORS: Patti Wade, CDCCI is Director of the Center for Aging, Dementia and Longevity with the Orange Grove Center in Chattanooga, TN. AmyJo Schamens, BCBA is Director of Children’s Services with the Orange Grove Center in Chattanooga, TN. Rick Rader, MD is Director of Morton J. Kent Habilitation, and Interim Director of Health Care Services with the Orange Grove Center in Chattanooga, TN.

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HEALTHCARE Telehealth in dentistry increases family understanding of dental home care & helps practitioners build rapport with patients before they even enter that “scary” place. The behavioral goal is to make dental visits fun & more comfortable for the patient.

TELEDENTISTRY A NEW PARADIGM TO IMPROVE ORAL HEALTH BY DAVID FRAY, DDS, MBA AND AMBER LOVATOS, RDH, BSDH

“Christian, lay down.” Christian shakes and sits up again. “Christian, lay down and open your mouth.” Christian covers his mouth. “Christian, I need you to let the doctor take a look; just like you let me do at home.” 40 August 2019 • EP Magazine | ep-magazine.com

e all know too well the struggle we face when taking our child to the dentist, especially when having a child with a disability. Amber Lovatos, RDH, BSDH, is a dental hygienist and an assistant professor at The University of Texas Health Science Center at Houston (UTHealth) School of Dentistry. Her son Christian has autism. Amber concentrates her research on using technology in dentistry to facilitate and increase access to dental

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ALL HANDS ON DECK: Amber with son Christian. Although Amber is a dental professional, she still struggles with Christian cooperating at the dentist. PHOTO PROVIDED BY AMBER LOVATOS

care. Although Amber is a dental professional, she still struggles with her son Christian cooperating at the dentist. As a parent and a dental hygienist, Amber understands the struggle that comes with making medical decisions for children. We can all agree that although our children may not want to go to the dentist, it is imperative that they receive regular dental care. Delaying visits to the dental office can lead to more severe issues such as dental decay, gum disease, and dental abscesses. These are all issues that will lead to more invasive dental treatment. I am David Fray, DDS, an associate professor at UTHealth School of Dentistry, with family members from the disability and special needs population. During my 12-year tenure as Chief of Developmental Disabilities in Hawaii, we designed and initiated the “Virtual Dental Home” project based upon the concept of “teledentistry.” Together with Amber, we collaborated as faculty in different departments within our school to create a teledentistry curriculum pilot program for dental and dental hygiene students at UTHealth School of Dentistry. This combined knowledge on how to use telecommunication facilitates improved oral health for people with intellectual disabilities. So how do we get our children the care they need, while increasing cooperation and providing a comfortable environment? We believe teledentistry is an integral component for the solution to that question. The use of telecommunication in medicine has become increasingly popular. People can now receive medical care from the comfort of their homes. If your child woke up with pink eye today, you could connect to a medical provider through a HIPAA-compliant app on your phone, have

an exam, and a prescription sent to your pharmacy without having to leave your home or take off from work. The same technology can be useful in dentistry, but of course, with some limitations. You cannot receive traditional restorative dental care virtually, but you could potentially have an exam performed virtually and then have an allied health care provider provide preventive care in your home, including radiographs and behavioral support learning. In Washington (both state and D.C.) and New York, dental hygienists under the supervision and direction of a dentist can visit patients in their homes and provide care. A dental hygienist brings mobile dental equipment: an intra-oral camera, a laptop with encryption for HIPAA security (“patient information protection software”), an X-ray machine and a portable dental unit used for cleaning teeth. The dental hygienist takes pictures and/or videos of the patient’s mouth and sends them to a dentist using the HIPAA compliant teledentistry software. The dentist viewing the patient in real time can perform the exam virtually using the images and other assessment data collected by the hygienist. Once the dentist has performed the exam, the hygienist can provide preventive care and therapeutic care. Preventative care includes performing cleanings, applying fluoride, and silver diamine fluoride (SDF). SDF is a fluoride used to “arrest” decay (stop it temporarily) until the patient is able to visit a dentist. SDF application is noninvasive and painless. It also can turn teeth black only where there is active decay. Sometimes due to discoloration of teeth people choose to use SDF for back teeth while the front teeth are filled first. How does receiving care at home help

You cannot receive traditional restorative dental care virtually, but you could potentially have an exam performed virtually and then have an allied healthcare provider provide preventive care in your home.

patients with disabilities? The dental office can be a scary environment, especially for the first few visits. Additionally, health providers can learn much from the family home setting. The home setting just feels safer than any dental office, especially if previous experiences were traumatic. What are the triggers that start adverse behavior? How do family members gain cooperation at home that can be duplicated in a dental office later? Just using a mouth mirror from a stranger will cause a reaction from some persons with intellectual disabilities. Family members can place the mirror and learn improved brushing techniques from the dental hygienist. Gradually the “bond of trust” transferred to the hygienist from the parent or caregiver will make the next steps of exam, X-rays and a cleaning possible. This method of care known as incremental desensitization is based upon the work of Amber from UCLA many years ago. She demonstrated that behaviors do change over time when understood as communication that creates a desired result and incremental learning occurs. Family members and dental team members can reinforce learning new desired behaviors. The best results are the formation of a plan guided by a behavioral professional such as a Board Certified Behavior Analyst (BCBA) with a behavioral support plan that includes specific stepby-step goals to learn to be a better dental patient. Wow, that takse a lot of work! It can take many visits. The benefit to the dental team is that this incremental learning does not use valuable chair time at the office. Telehealth approaches increase family understanding of dental home care and result in the dental team understanding the person before ever entering that “scary” place. The person learns to trust the dental team hygienist and the office tour becomes a scavenger hunt for familiar dental items. Making dental visits fun is the behavioral goal. here are limitations to teledentistry. For one, not all states have passed teledentistry legislation that permit dental exams performed virtually. Second, some states have teledentistry laws that limit the location for this innovative technology. Even if a dentist can perform an exam using teledentistry, it might be limit-

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ed to locations such as health care facilities, schools, charitable organization, and the physicians’ office. In states such as Arizona, there are limitations. A person could still receive care at a familiar location such as their school, but not at home. If you live in a state with no teledentistry legislation, you may not benefit from a “virtual” oral exam, but you may obtain a consultation depending on that state’s Dental Practice Act and a participating supervising dentist. The difference between an exam and a consultation is that an exam provides a diagnosis and a treatment plan. This theoretically allows a dental hygienist (if they provide care in a state that allows general supervision) to provide care for patients remotely. A consultation would be receiving a dentist’s opinion and recommendation based upon information provided by the hygienist. As parents, we often have questions about our children’s health and continuously take our child to the doctor for perceived ail-

ments that often prove to be benign. In situations such as these, parents can use their phones to take images of areas of concerns in their child’s mouth and send it to their dentist. The dentist would then be able to guide the parent on whether or not a visit to the dental office is an immediate need. Patients can also potentially use teledentistry to identify other concerns such as yeast infections in the mouth, often called thrush (oral candidiasis). This is important especially in patients who are at higher risk, such as patients with genetic disorders like Down syndrome, autoimmune disorders, and leukemia or lymphoma. While this practice is allowed in all states, parents must still protect their child’s health care information. It is essential to ask the dentist to provide a HIPAA-compliant way to share their child’s information – such as through a HIPAA teledentistry encrypted application. Many dentists now use these internetbased software applications.

Technology continues to advance the opportunity for better oral help.

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hile not all states are created equal when it comes to laws, technology continues to advance the opportunity for better oral help. Parents are advocates that can work with their dental professionals and elected representatives to expand the benefits of teledentistry to those individuals most in need of improved oral health.

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NOTE: The opinions expressed in this article are those of the authors and do not represent The University of Texas Health Science Center at Houston (UTHealth) School of Dentistry. No part of this article is intended for the use or recommendation for any specific patient or treatment. All individuals with disabilities and their families are encouraged to have a dentist and dental home and rely on professional recommendations from those that know the unique person and their abilities. ABOUT THE AUTHORS: David Fray DDS, MBA is Associate Professor, University of Texas Health Science Center at Houston (UTHealth) School of Dentistry, Department of General Practice and Dental Public Health. Amber Lovatos RDH, BSDH is a Dental Hygienist and Assistant Professor at the University of Texas Health Science Center at Houston (UTHealth) School of Dentistry in the Department of Periodontics and Dental Hygiene.

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IMPROVING PARENT AND DENTAL OFFICE COMMUNICATION

PERSONAL TOUCH: As a parent, you are the best advocate for your child every day. Knowing what is important to a dental team prior to the visit improves oral health.

BY JUNE SADOWSKY, DDS, MPH AND DAVID FRAY, DDS, MBA

The form that appears on the following page, developed at the University of Texas Health Science Center (UT Health) School of Dentistry at Houston, informs and prepares families for dental visits. Please share it with your dentist and dental team to understand clearly the needs of your adult child with Intellectual and Developmental Disabilities (IDD). More in depth information facilitates better planning for future appointments.

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e recently received the following message from a mom of an adult daughter: “Thank you so much for calling about my daughter’s dental situation. I’m sending you some pictures of her smile and x-rays. The first pictures are from 2017 and 2018 showing her smile. She had an extra tooth at that point. We had tried to get the hospital 44 August 2019 • EP Magazine | ep-magazine.com

dental clinic to deal with that extra tooth all her life, but they wouldn’t. It got a visible cavity after she turned 17 and the children’s hospital program would no longer see her. We tried several different dentists and finally found a doctor who agreed to do something. In December of 2018, we took her in for surgery thinking he would pull the extra tooth, and came out with not only that done, but also four root canals. Now the front teeth are crumbling and look black. What do I do?” A lack of thorough communication leads to misunderstanding and different expectations that could be anticipated and discussed with the family, prior to treating a patient that is combative and not verbal. Postponing treatment may lead to much bigger problems. Communicating with pictures is very helpful. As a parent, you are the best advocate for your child every day. Knowing what is important to a dental team prior to the visit improves oral health. Your feedback as parents to improve this form is welcome.• ABOUT THE AUTHORS: June Sadowsky DDS, MPH is Professor, University of Texas Health Science Center at Houston (UT Health) School of Dentistry. David Fray DDS, MBA is Associate Professor, University of Texas Health Science Center at Houston (UT Health) School of Dentistry.

DENTAL VISIT PRE-APPOINTMENT FORM Name ______________________________________

Care Provider ________________________________________

Guardian _________________________________________________________________________________________

Plan for Shaping Behavior:

Always Needed

Sometimes Needed

Always Cooperative

a. Methods being learned:

ABA Therapy

BCBA

Modeling

Other _________________________________________________________ b. Circle or write the type of prompts for communication cuurently effective: Physical (hand-over-hand brushing)

Physical Cue (touch)

Pointing

Social Story

Verbal

Other _________________________________________________________ Prevention Plan a. Xylitol: 5-minute exposure 3x/day

Form being used _______________________________________

b. Fluoride Varnish: Applied 2x/year

Next time: ____________________________________________

c. Fluoride Rinses: Applied 3 times in 1-week x/year.

Next time: ____________________________________________

d. High concentration fluoride toothpaste or gel:

Prevident 5000 Rx How and when to apply:__________________________________

e. Chlorhexidine:

Person rinses and empties mouth

f. Special diet? Decrease exposure to sugar/starches g. Home Care: Brushing x/day

Care provider uses swab technique How? ________________________________________________ Electric

Manual

Interproximal

Flossing x/week Who? ________________________ How?_______________________________ Professional Visit and Recommendations a. Last dental cleaning appointment

Date: ____________

Last treatment date:___________________

b. Dental checkup result or treatment recommendations: ____________________________________________________ __________________________________________________________________________________________________ __________________________________________________________________________________________________ c. What works best at home to achieve oral health care? ___________________________________________________ __________________________________________________________________________________________________ __________________________________________________________________________________________________ d. What health care visits are most successful and why? ___________________________________________________ __________________________________________________________________________________________________ __________________________________________________________________________________________________ Our types of payment and coverage: ____________________________________________________________________ __________________________________________________________________________________________________ __________________________________________________________________________________________________ (continued)

Oral care is essential in one’s daily care regimen. All people need daily thorough oral care and it is vital to overall health. The complications from poor oral health include: Pain and discomfort that may lead to dehydration and/or poor nutrition

Increased risk of: • Bacteremia • Septicemia • Respiratory tract infection • Pneumonia • Cardiovascular problems for those with an existing heart defect

Decreased saliva production may lead to xerostomia and tooth loss

Bad breath from the accumulation of plaque/debris may have social psychologica impact

Despite evidence that poor oral health results in unnecessary illness, there may be no desire to make oral hygiene a daily routine. Many may lack the information to assess accurately another’s oral health status. Each person caring for another with intellectual disabilities must become knowledgeable of oral care and make hygiene assessment routine. Primary Assessment Questions Help identify where problems may occur. Teeth are clean without debris Moist oral tissues and tongue

Yes Yes

No No

Saliva is adequate or “ropey” Lips are dry and/or cracked

Yes Yes

No No

This assessment tool is modified for individuals with intellectual and developmental disabilities and their families. Please circle the number that best describes the patient’s oral health. Teeth or denture cleanliness 1. Clean and free from debris, no odor 2. Plaque: the soft white stuff that is localized debris 3. Generalized plaque and food debris which indicates poor oral hygiene 4. Rank odor and many visible cavities Gingiva / gums 5. Pink, moist, firm, does not bleed ever 6. Red or swollen with slight bleeding on brushing 7. Tender and depressible; bleeds easily with brushing 8. Bleeding or ulcers are visible Tongue 9. Pink with large papillae (the little bumps). Looks normal 10. Coated with a white coat that can be brushed off 11. Shiny or pebbly look that is reddened and hurts to brush 12. Fissured or cracked tongue that appears dry and is painful to touch Cheeks 13. Pink, moist and smooth 14. Red or coated 15. White areas 16. Ulcers or bleeding

Lips 17. Pink, smooth, intact 18. Dry/cracked 19. Bleeding 20. Ulcers Hard / soft palate or roof of mouth 21. Pink and moist 22. Coated with moist secretions 23. Coated with dry secretions 24. Coated with a crusty layer Saliva 25. Present and watery 26. Thick (stretches like a rope) 27. Insufficient (hard for person to spit) 28. Absent (really dry mouth) Airway / throat area 29. Breathes normally 30. Uses humidifier/nebulizer/ frequent infections 31. Mouth breather and front teeth do not touch/ or has Disordered Sleep Breathing 32. Artificial airway/ intubated/ feeding tube/ treated for Obstructive Sleep Apnea

Add the numbers of each answer. If the number is greater than 20, a dental visit may be an immediate need. Schedule regular appointments with your dentist and physician. Oral care regimen: • Small-head, soft toothbrush or a battery-operated toothbrush used gently. • A pea-sized amount of fluoride toothpaste – twice daily. More if you have cavities.

• For anyone having trouble swallowing they should have a suction toothbrush (Cutler and Davis, 2005).

• Flossing is difficult to do. Use a foam or rubber mouth prop. Floss the back teeth first.

• Foam swabs should not be used especially those with lemon-glycerin because it is a weak acid and can damage tooth surfaces. Use a fluoride mouthwash daily.

• Learn how to make oral home care fun. Don’t force it and encourage the person to use a dry brush or an interdental brush frequently every day.

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Smoothing the Transition for Young People Who Live with Chronic Disease BY LINDA KOBERT

When Joseph Berretone III went off to Duquesne University last fall, he and his mom, Monica Pedano, barely gave his health a second thought. Joseph had been diagnosed as a toddler with juvenile dermatomyositis (JDM), a rare autoimmune disease of the muscles that causes weakness, extreme fatigue, debilitating skin rashes, and other symptoms. His disease had been in remission for ten years, though. He was healthy. He was strong. And he was doing what kids do: growing up and leaving home. The goal is to help the young person to gradually assume more responsibility for their own healthcare management and develop a greater sense of confidence.

ut it was not a good year for Joseph. While his JDM stayed in remission, his immune system was still compromised, leaving him more vulnerable than most young people to a variety of ailments. He spent a good part of the school year being sick. “I was living in the dorms where there was always someone sick,” Joseph says. “The first time I got sick, I came down with both strep throat and mono, that triggered it all. After that I wasn’t able to fully recover.” It took four weeks for the providers at the student health center to accurately diagnose and treat Joseph’s sore throat. When they did, he had a bad reaction to the medication. His throat was so sore he couldn’t swallow food, so he lost a lot of weight. He was staying up late to study and go out with friends and working and traveling with the football

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Parents must also make their own transition.

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team as equipment manager, so he wasn’t getting enough sleep. After one rainy football game where Joseph sat on the field, soaking wet and freezing, he ended up in the hospital with pneumonia. “I actually had no idea that just being cold and out in the elements would contribute to me getting sick so easily,” Joseph says. Pedano, who spent much of the semester driving back and forth across the state to check on and care for her son says, “It was a nightmare.”

Youth vs. reality

N. Linda Iferika didn’t want to have anything to do with her disease during her late teens and early 20s. Like Joseph, she was diagnosed at an early age with JDM. While she had periods where she experienced only mild muscle weakness, she had been taking prednisone and other medications on and off to control her symptoms. When she was finishing high school and starting college, however, she began to take her condition less seriously and sometimes stopped taking her meds. A young person first “My symptoms weren’t that bad, so I thought how bad could it Dr. Richard Chung, an internist and pediatrician who specializes be,” she says. “At the time, I was extremely angry with the whole in adolescent medicine at Duke University School of Medicine, says situation. I didn’t want to be different. I didn’t want to take the it’s not surprising that young people with chronic conditions like medicine. There were times when I had doctor’s appointments, myositis might have some difficulty when they take those first and I just wouldn’t go. I didn’t want to deal with it, so I just said, steps away from home and family support. whatever.” “When they see the “The 18-to-22-year age range is a time of a Iferika now understands her reaction lot of change on every level,” Chung says. doctor, encourage was a normal teenage response to an It’s a time when kids are graduating from overwhelming situation. the young person extremely high school or college. They’re leaving home Interestingly, the doctor who diagnosed her to be the one to to continue their education or entering the told her mom that Linda would outgrow workforce. They’re moving away from a famthe disease, an assertion that turned out to respond to the ily unit to a more peer-oriented social and inaccurate. Now in her late 30s, Iferika doctor’s questions be living situation. They’re making the leap to wishes someone would have corrected that and ask their own misinformation, stressing the importance financial independence, which can also cause changes in health insurance. And because of following through with treatment recquestions. And they are no longer children, their healthcare ommendations. She now feels that some of even younger must transition from pediatric to adult care. her current physical challenges are probachildren can be “It’s a perfect storm,” Chung says. “We have bly related to that time in her life when she a lot of examples of young people with chronic permitted to take ignored the responsibilities of her treatillnesses who do reasonably well through ment because she just wanted her disease their own meds their 18th birthday and then dramatically fall to go away. every day.” off, not because their disease has evolved or For Joseph, on the other hand, it wasn’t their treatments have changed, but because the so much that he was inconsistent with his supports that have propped them up over time fall away.” treatments as that he wasn’t prepared for the health crises he On top of all that, while young people in their late teens and encountered. early 20s are physically mature, their mental and emotional matu“He did the right thing and went to the doctor, but they didn’t rity is still in flux. Their cognitive and decision-making skills may know how to deal with someone with such a compromised not be fully developed until the mid-20s, in most cases. Young immune system,” Pedano says. “There were so many things we adults may have more trouble than older adults with things like needed to think about that we didn’t even consider. I wish someself-management, decision making, and executive functioning— body had prepared us and said, hey look, this is going to be the ability to plan, organize, and complete tasks. tough. You need to watch out for these things.” “It’s not that young people aren’t smart or talented, but they ABOUT THE MYOSITIS ASSOCIATION: don’t always have the ability to comprehend difficult medical concepts and make life decisions around those concepts,” says Dr. Ann Reed, a pediatric rheumatologist and myositis specialist at Duke. “That leaves young people very vulnerable during a time when they’re trying to be independent and make their own decisions. All of a sudden they are legal, and their parents aren’t there to help them.” For the young person who is living in a new place and trying to adjust to all the other demands of work or school and social life, The Myositis Association is the leading international nonprofit their health may not be at the top of their list of concerns. organization committed to the global community of people Especially if their disease has been well controlled, it stands to realiving with myositis, their care partners, family members, and son that finding a new doctor or getting their medications refilled the medical community. TMA provides patient education and may not be the 19-year-old’s first priority. support, advocacy, physician education, and research funding “We have to remember that a young person is a young person for myositis diseases. To learn more about myositis go to first, with all sorts of interests and priorities, and being a patient is www.myositis.org only part of that,” Chung says. 48 August 2019 • EP Magazine | ep-magazine.com

Taking on adulthood

Taking advantage of resources

Making the transition into adulthood, however, doesn’t have to No matter how much parents prepare their child, releasing them be difficult for children with chronic or disabling conditions. There into the world can still be worrisome for families. are steps families can take to help the young person move from “You need to be realistic about how you can help your child once reliance on mom and dad to taking responsibility for their own they leave home,” says Pedano. “When they are four or five hours care. This transition flows more seamlessly when there is coordina- away, you have no control over their eating habits, their sleeping tion and planning among the healthcare team, the parents/family, habits, their schedule, what kinds of medicines they’re taking, and and the young person. whether or not they’re taking care of themselves. And you forget Experts like Chung and Reed often begin by assessing how ready they are 18 years old and aren’t going to listen to you anyway.” the family is for this process. Children vary considerably in their Healthcare providers can be a family’s greatest resource in helping ability to comprehend complex medical concepts as well as how them make this transition. Many university medical centers like Duke comfortable they are with being more involved in their own health- have physicians who specialize in both internal medicine and pedicare. Parents also vary in how ready they may be to turn over the atrics, and many have programs designed specifically to help facilitate reins and let their child take on more responsibility. medical transition for young people with chronic health needs. This assessment is especially important Even if your health care provider is not when the young person has a developmenassociated with such a program, they or their tal, cognitive, or learning disability. Someone staff can often help prepare the way for who has autism, for example, will need a young people who are heading off into the very different plan for transitioning to adult world, providing referrals and facilitating care than someone like Joseph who has dercommunication with local resources. matomyositis but does not have the cogniTransitioning well does not require medtive or emotional challenges other young ical intervention, however. Other resources people may face. are available, including disease-specific While every family is different in terms of patient organizations like The Myositis readiness, laying the groundwork for this Association (www.myositis.org), that provide the transition could start as early as age 12. For chance to meet and chat with other patients Chung, this means simply talking with the and families who are going through similar family about the idea that this transition is challenges. Got Transition (www.gottransition.org) is coming and that it is important to start thinka comprehensive resource for parents, young ing about it well in advance. people, and providers, offering insights and “The biggest thing is articulating the tools for all kinds of issues that families may importance of transition,” Chung says, “connever have thought about before. vincing everybody in the room that this is GO TO THE SOURCE: Many university Linda Iferika also suggests looking for crucial, and then planning well in advance medical centers have programs designed resources close to home. “Reach out to othfor what that transition is going to look like.” to facilitate transition for young people ers,” she says. “Find a support group. Tap The goal of transition is to help the young with chronic health needs. into friends. Find some other outlet for you person to gradually assume more responsibility for their own anger. And remember: This diagnosis is not who you are.” healthcare management and develop a greater sense of confidence. lessons learned Parents must also make their own transition. As they start encouraging their child to be more independent, the parents can back Last year was a big learning experience for Joseph. When he away from complete control over their child’s healthcare and heads back to school this year, however, things will be different. become more of a supportive backup. “The biggest thing is I’m going to stay on top of my health,” Some of the things that will facilitate this independence are Joseph says. “Sometimes you forget about it. With everything going on, empowering the young person to schedule their own appoint- your health is not your number one concern, but it really needs to be.” ments and refill prescriptions. When they see the doctor, encourJoseph will pack his vitamins and protein shakes this year, and age the young person to be the one to respond to the doctor’s ques- make sure he’s eating and sleeping enough. And when he starts tions and ask their own questions. And even younger children can feeling like something isn’t quite right, he promises to be more be permitted to take their own meds every day. proactive about getting the medical attention he needs. When it comes to medications, it is important for the young perPedano feels better about the people who will care for her son, son to know the names of all the drugs they take, why they are tak- too. “We know everyone in student health services by first name ing them, what the doses are, and what side effects to look out for. now, and they understand Joseph’s disease and what it has done to Prednisone, for example, should never be stopped suddenly with- his immune system. They know they need to take it more seriously. out tapering the dose. It’s also important that the young person If he comes in, they’re going to treat it differently.”• especially understand any possible drug interactions between their medications and alcohol. For example, alcohol significantly ABOUT THE AUTHOR: increases the risk for liver damage while taking methotrexate, Linda Kobert is the Research and Communications Director of The Myositis Association. another medication often prescribed for dermatomyositis. ep-magazine.com | EP Magazine • August 2019 49

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FIRST-EVER SUCCESSFUL MIND-CONTROLLED ROBOTIC ARM WITHOUT BRAIN IMPLANTS SOURCE: CARNEGIE MELLON UNIVERSITY

A team of researchers from Carnegie Mellon University, in collaboration with the University of Minnesota, has made a breakthrough in the field of noninvasive robotic device control. Using a noninvasive brain-computer interface (BCI), researchers have developed the first-ever successful mindcontrolled robotic arm exhibiting the ability to continuously track and follow a computer cursor. eing able to noninvasively control robotic devices using only thoughts will have broad applications, in particular benefiting the lives of paralyzed patients and those with movement disorders. BCIs have been shown to achieve good performance for controlling robotic devices using only the signals sensed from brain implants. When robotic devices can be controlled with high precision, they can be used to complete a variety of daily tasks. Until now, however, BCIs successful in controlling robotic arms have used invasive brain implants. These implants require a substantial amount of medical and surgical expertise to correctly install and operate, not to mention the cost and potential risks to subjects, and as such, their use has been limited to just a few clinical cases. A grand challenge in BCI research is to develop less invasive or even totally noninvasive technology that would allow paralyzed patients to control their environment or robotic limbs using their

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own “thoughts.” Such noninvasive BCI technology, if successful, would bring such much-needed technology to numerous patients and even potentially to the general population. However, BCIs that use noninvasive external sensing, rather than brain implants, receive “dirtier” signals, leading to current lower resolution and less precise control. Thus, when using only the brain to control a robotic arm, a noninvasive BCI doesn’t stand up to using implanted devices. Despite this, BCI researchers have forged ahead, their eye on the prize of a less- or non-invasive technology that could help patients everywhere on a daily basis. Bin He, Trustee Professor and Department Head of Biomedical Engineering at Carnegie Mellon University, is achieving that goal, one key discovery at a time. “There have been major advances in mind-controlled robotic devices using brain implants. It’s excellent science,” says He. “But noninvasive is the ultimate goal. Advances in neural decod-

PHOTO: COLLEGE OF ENGINEERING, CARNEGIE MELLON UNIVERSITY

now, the arm follows the cursor in a smooth, continuous path. In a paper published in Science Robotics, the team established a new framework that addresses and improves upon the “brain” and “computer” components of BCI by increasing user engagement and training, as well as spatial resolution of noninvasive neural data through EEG source imaging. The paper, “Noninvasive neuroimaging enhances continuous neural tracking for robotic device control,” shows that the team’s unique approach to solving this problem not enhanced BCI learning by nearly 60% for traditional center-out tasks, it also enhanced continuous tracking of a computer cursor by over 500%. The technology also has applications that could help a variety of people, by offering

safe, noninvasive “mind control” of devices that can allow people to interact with and control their environments. The technology has, to date, been tested in 68 able-bodied human subjects (up to 10 sessions for each subject), including virtual device control and controlling of a robotic arm for continuous pursuit. The technology is directly applicable to patients, and the team plans to conduct clinical trials in the near future. “Despite technical challenges using noninvasive signals, we are fully committed to bringing this safe and economic technology to people who can benefit from it,” says He. “This work represents an important step in noninvasive brain-computer interfaces, a technology which someday may become a pervasive assistive technology aiding everyone, like smartphones.”•

ABOUT THIS NEUROSCIENCE RESEARCH ARTICLE:

Source: Carnegie Mellon University

PRACTICAL APPS: Controlling robotic devices with the mind alone will benefit the lives of paralyzed patients and those with movement disorders.

ing and the practical utility of noninvasive robotic arm control will have major implications on the eventual development of noninvasive neurorobotics.” Using novel sensing and machine learning techniques, He and his lab have been able to access signals deep within the brain, achieving a high resolution of control over a robotic arm. With noninvasive neuroimaging and a novel continuous pursuit paradigm, He is overcoming the noisy EEG signals leading to significantly improve EEGbased neural decoding, and facilitating realtime continuous 2D robotic device control. The technology is directly applicable to patients, and the team plans to conduct clinical trials in the near future. The image is credited to College of Engineering, Carnegie Mellon University. Using a noninvasive BCI to control a robotic arm that’s tracking a cursor on a computer screen, for the first time ever, He has shown in human subjects that a robotic arm can now follow the cursor continuously. Whereas robotic arms controlled by humans noninvasively had previously followed a moving cursor in jerky, discrete motions–as though the robotic arm was trying to “catch up” to the brain’s commands–

Image Source: The image is credited to College of Engineering, Carnegie Mellon University.

Funding: This work was supported in part by the National Center for Complementary and Integrative Health, National Institute of Neurological Disorders and Stroke, National Institute of Biomedical Imaging and Bioengineering, and National Institute of Mental Health.

Original Research: Open access; “Noninvasive neuroimaging enhances continuous neural tracking for robotic device control”. B. J. Edelman, J. Meng, D. Suma, C. Zurn, E. Nagarajan, B. S. Baxter, C. C. Cline and B. He. Science Robotics. doi:10.1126/scirobotics.aaw6844 Abstract: Noninvasive neuroimaging enhances continuous neural tracking for robotic device control Brain-computer interfaces (BCIs) using signals acquired with intracortical implants have achieved successful high-dimensional robotic device control useful for completing daily tasks. However, the substantial amount of medical and surgical expertise required to correctly implant and operate these systems greatly limits their use beyond a few clinical cases. A noninvasive counterpart requiring less intervention that can provide high-quality control would profoundly improve the integration of BCIs into the clinical and home setting. Here, we present and validate a noninvasive framework using electroencephalography (EEG) to achieve the neural control of a robotic device for continuous random target tracking. This framework addresses and improves upon both the “brain” and “computer” components by increasing, respectively, user engagement through a continuous pursuit task and associated training paradigm and the spatial resolution of noninvasive neural data through EEG source imaging. In all, our unique framework enhanced BCI learning by nearly 60% for traditional center-out tasks and by more than 500% in the more realistic continuous pursuit task. We further demonstrated an additional enhancement in BCI control of almost 10% by using online noninvasive neuroimaging. Last, this framework was deployed in a physical task, demonstrating a near-seamless transition from the control of an unconstrained virtual cursor to the real-time control of a robotic arm. Such combined advances in the quality of neural decoding and the practical utility of noninvasive robotic arm control will have major implications for the eventual development and implementation of neurorobotics by means of noninvasive BCI.

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My Journey of Gratitude: What I’ve Learned and Why I’m Thankful BY ROSE MORRIS

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PHOTO PROVIDED BY RACHEL BURNETT

“I envisioned a tear jar where I stored away the crushing emotion that I couldn’t let him see. It was a long time before I heard Abram speak a seemingly simple phrase: ‘I love you.’ How many times had I taken that phrase for granted from other loved ones? Now when I hear it, my tear jar empties and I am renewed every single time.” TRYING PATIENCE: The author with son Abram; “I learned that patience isn’t something that I would find or be given; I am driven by my intense love for my children to work and create patience.”

What does it mean to have a child with special needs? Sometimes it feels like an overwhelming force, but other times, I am reminded of the gift that it truly is. Over the years, the overwhelming fear and uncertainty have been replaced by gratitude. That’s not to say that I don’t still have fears about my son, Abram’s, future or experience days more difficult than I feel equipped to handle. But I’ve experienced a shift in the way I think about autism. I’ve reached a place of gratitude, for how our journey with autism has been better than I feared initially and for how this journey continues to make me a better parent and person.

I Learned to Not Take Anything for Granted

When I was a first-time mom with my older son, there were so many milestones I took for granted. From eating and sleeping, to talking and potty training, I was confident that we would reach each milestone and fall into a comfortable routine. Raising Abram has certainly been more challenging. I realized sleep is a gift and that not every parent will have the freedom to sleep without constant fear for their child’s safety. I learned how to fight for simple and routine things and appreciate every achievement, regardless of when or how it arrives. With Abram, I grieved the milestones that I thought would never come. I envisioned a tear jar where I stored away the crushing emotion that I couldn’t let him see. It was a long time before I heard Abram speak a seemingly simple phrase: “I love you.” How many times had I taken that phrase for granted from other loved ones? Now when I hear it, my tear jar empties and I am renewed every single time.

I Learned to Be Patient

No one who knows me will describe me as patient, but I have my moments now. I used to pray for patience. Then God gave me Abram. I learned that patience isn’t something that I would find or be given; I am driven by my intense love for my children to work and create patience. It’s an action, not a feeling, and it takes work. I realized that Abram’s meltdowns are intensified by me,

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by infusing my own frustration and aggravation into the situation. I learned very quickly that I can’t fake calmness or mask my emotions; Abram can feel the energy I release and will feed off of it, so my calmness has to come from the inside. I center myself by visualizing a cool, crisp, serene and slowly moving river that allows me to let everything go. If we’re late, we’re late. If we miss an appointment, we’ll make another one. I learned how to focus on what is important and what I can control in the situation. When I stopped getting angry at Abram’s meltdowns and, I’ll admit, at him, everything improved. I learned that my patience led to less intense meltdowns and that we could often head them off with happy distractions. I had to own my emotions and actions and become a better parent for him. Despite my prayers, best intentions and love for my husband and children, no one but Abram could have taught me how to change.

I can attest to that power of hope and share it with other parents. My “better” may look different than yours, but there is a better. With time, you really get to know your child and their needs, you develop a bigger and stronger support system, and you realize what’s important and how to focus your physical and emotional energy on those things. I share my hope that every parent reaches a point where they can find the positive in each situation and celebrate every achievement, large and small. For me, each new milestone and “I love you” renews my strength. I am grateful to Abram for teaching me how to be a better parent for each of my children and for how to truly appreciate the simple and routine. With a little patience and a lot of hope, we can navigate this journey. It gets better. •

“Early on, Abram’s pediatrician made a simple statement: ‘It gets better.’ I didn’t believe her, but I really needed it to get better, so I had to at least have hope. It’s hard enough parenting a two- or three-year-old, and it’s exponentially harder when there is a diagnosis involved. My ‘better’ may look different than yours, but there is a better.”

I Learned the Power of Hope

Very early on, Abram’s pediatrician made a simple statement: “It gets better.” I didn’t believe her, but I really needed it to get better, so I had to at least have hope. It’s hard enough parenting a two- or three-year-old, and it’s exponentially harder when there is a diagnosis involved. Many years later, I’m grateful that

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ABOUT THE AUTHOR: Rose Morris, founder and president of Abram’s Nation, is a mother who was driven by the relentless pursuit to keep her son, Abram, who is on the autism spectrum, safe at night. When she could not find a suitable solution, Rose designed and developed The Safety Sleeper™, the first enclosed bed system of its kind. Recognizing many others deserved the same freedom to sleep without fear for the safety of their loved ones, Rose began her mission to make meaningful impact on others through Abram’s Nation. To learn more, visit www.abramsnation.com

Because my parents taught me that my blindness is not a barrier...

I can be whatever I want to be.

VISIONARY: Special Olympics Mexico swimmer Michelle Falcon has her vision tested; Healthy Athletes programs provide athletes health services and education in seven different disciplines, including hearing and vision screenings, oral health care, and coping skills.

WHY WE NEED TO MAINTAIN A STRONG FEDERAL COMMITMENT TO SPECIAL OLYMPICS BY U.S. SENATOR ROY BLUNT (MO.)

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thletes of determination” was the perfect theme for the 2019 Special Olympics World Games that took place in Abu Dhabi in March. I cannot think of a better way to describe the extraordinary individuals from 170 countries around the world who participated in the games. This was one of many Special Olympics events I’ve attended during my time in the Senate, but it was my first World Games. I’ve had the privilege of attending events throughout my home state of Missouri, including the opening of the Training for Life Campus in Jefferson City last year. I strongly believe in the cause of Special Olympics – promoting acceptance and inclusion of those with intellectual disabilities – and the role the federal government must play in ensuring this happens. The World Games is an opportunity to bring attention to the challenges people with intellectual disabilities face every day and to continue discussions across countries and regions – and among people from different socio-economic backgrounds – about how best to foster inclusion. It also creates an environment of community that was evident from the moment I stepped off the plane and saw Special Olympics advertisements and signage. At the games, 56 August 2019 • EP Magazine | ep-magazine.com

every athlete, coach, family member, and supporter took part in supporting a principle of a brighter future for these individuals – one of acceptance and unity. My time at the World Games reinforced my belief that the U.S. government has an important role to play in supporting Special Olympics and individuals with developmental disabilities. As the chairman of the Senate appropriations subcommittee that funds both the departments of Education and Health and Human Services, I have made it a priority to increase funding for two unique programs that support Special Olympics. The first, Healthy Athletes, was on display at the World Games. Healthy Athletes programs, which are part of Special Olympics events, provide athletes health services and education in seven different disciplines, including hearing and vision screenings, oral health care, and coping skills. The Healthy Athletes program provides Special Olympics athletes, like any other athlete, access to premier health services. More important, it provides them with access to services they may not have in their everyday life. We cannot forget that it is difficult for most people to communicate effectively with their doctors. Whether because of embarrassment, inability to effectively describe a medical issue, or fear of doctors, many people face challenges in the health care system.

PHOTO PROVIDED BY STEPHANIE CORKETT / SPECIAL OLYMPICS

Imagine what this situation could be like for someone with a developmental disability who may have communication challenges in all parts of their lives. Healthy Athletes allows individuals to have specialized screenings in an environment that fosters communication and is tailored to focus on issues that may affect those with developmental disabilities specifically. In Abu Dhabi, my wife Abby and I witnessed the life-changing effect these routine health screenings can have on an athlete by watching a young female athlete from Samoa get a hearing screening. While we observed her hearing test, the recognition of sounds was evident on her face. Her coach exclaimed that this was the first time she was hearing these sounds. Her family, who was with her in the pavilion, said they did not know that there were hearing aids that would help her. It was amazing to witness that moment but also to know that, had it not been for the Healthy Athletes program, this young woman would continue to go through life without experiencing sound. While this Samoan athlete’s story is extraordinary, it’s not unusual. There are similar stories for hundreds of U.S. athletes as well. While watching the bocce tournament, I heard a similar story from a family from Connecticut. Their son had also just benefited from a hearing test at the Healthy Athletes pavilion. He was fitted for new hearing aids on site, even though his mother said she had no idea that his other hearing aids were not working effectively. I wrote the original bill that created Healthy Athletes as a member of the U.S. House 15 years ago and have sponsored legislation extending the program as a member of the Senate. After the first screening at Missouri State University where the Missouri State Games were being held that year, one young man who just got his pair of glasses said, “softball is a lot easier when there’s just one ball.”

SPECIAL OLYMPICS BENEFITS FROM BEING OVERWHELMINGLY FUNDED BY CHARITABLE CONTRIBUTIONS, BUT MODEST INVESTMENTS AT THE FEDERAL LEVEL CAN HAVE LIFECHANGING EFFECTS ON THE STUDENTS, FAMILIES, AND COMMUNITIES THEY TOUCH. These stories highlight the need to ensure people with developmental disabilities have access to programs that affect the health and wellness of Special Olympics athletes around the world. Individuals with intellectual disabilities are at a 40 percent greater risk for health issues, and many health professionals lack the training or experience needed to provide quality care. By increasing investment in Healthy Athletes through the appropriations subcommittee I chair, we’ve been able to provide more than 2 million free health screenings and more than 240,000 health care professionals around the globe with training on how to deal with patients with special needs. While Healthy Athletes highlights the importance of events like the World Games, my appropriations subcommittee also supports a vital component of inclusion for those with developmental disabilities in our schools. Through funding for the Department of Education, the federal government provides support for Special Olympics Unified Champion Schools. This program promotes inclusion activities through schools by implementing inclusive

sports, youth leadership, and whole school engagement for those students with intellectual disabilities as well as those without. This program allows students with developmental disabilities to be part of sports teams and leadership activities along with students without disabilities. Through sports, Special Olympics helps schools implement comprehensive policies to transform school climates and ensure students with disabilities are fully welcomed in student life. Unified teams also help students and other Special Olympics athletes build confidence and gain leadership skills while others without disabilities learn how to be part of an inclusive environment. Many times, and I know this from watching inclusive sports, you cannot tell the athletes apart. They are part of one team – and team sports bring people together. Over the four years that I have been chairman of the appropriations subcommittee that funds both Healthy Athletes and Unified Champion Schools, we have been able to nearly triple funding from $10.1 million to $28.1 million for these vital programs. This has allowed more Special Olympics Games to host Healthy Athletes events and more schools to participate in unified sports and leadership activities. Special Olympics benefits from being overwhelmingly funded by charitable contributions, but modest investments at the federal level can have life-changing effects on the students, families, and communities they touch. For example, funding through the Department of Education leverages significant private resources and supports programs in approximately 7,000 schools across the United States annually, up from 2,400 schools a few years ago. This helps us learn what interventions work and serves as a model for other schools and districts to support this kind of work without direct federal funding.

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his year, for the first time in history, the White House hosted American Special Olympics athletes from the World Games. This event sends an important message that our nation celebrates the achievements of these athletes just as we celebrate all other champions who put in the time and dedication to be the best. I am grateful to have attended the 2019 World Games to cheer on athletes from around the globe, but especially our American athletes. In particular, I want to congratulate an athlete from Missouri who participated in this year’s games: Colin Garrison. He was the only athlete from the 15,000 Missourians who participated in Special Olympics to be chosen for the Abu Dhabi Games. Like any Olympic athlete, just being part of the games was a huge endeavor that took hard work and perseverance. He raised nearly $4,000 to be able to attend the games, and he came home a medalist. He made Missouri proud. He made America proud. I am honored to be a vocal advocate for Special Olympics and to continue to fund programs that are fundamental components of the organization. I look forward to seeing generations of Special Olympics athletes live by their oath: “Let me win. But if I cannot win, let me be brave in the attempt.”• ABOUT THE AUTHOR: U.S. Senator Roy Blunt (Mo.) serves as Chairman of the U.S. Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies.

ep-magazine.com | EP Magazine • August 2019 57

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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

MILITARY SECTION

MILITARY LIFE

60 PCS SEASON: SOLUTION-BASED COMMITMENT TO THE MILITARY-CONNECTED CHILD WITH SPECIAL NEEDS By Angela Shaw

64 MENTAL HEALTH MATTERS IN THE MILITARY PUZZLES & CAMO

66 PROBLEMS IN THE PEW By Shelly Huhtanen

MILITARY LIFE

PCS SEASON SOLUTION-BASED COMMITMENT TO THE

MILITARY-CONNECTED CHILD WITH SPECIAL NEEDS BY ANGELA SHAW

Being a parent is both challenging and rewarding. To those in military service, blending a fast-paced military lifestyle within the familial mix provides for exponentially rewarding opportunities. At the same time, it presents prospects for distinctive challenges due to the realities of mobility and deployment which result in children of military families moving an average of six to nine times from kindergarten through high school.

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n addition to enduring deployment challenges, children in military families also face transition challenges of the postdeployment period. Striving to raise a child to his or her optimum independent, competent and productive self is often tied to rigors that many only see on the evening newscast. However, the men and women supporting our country meet such tasks and trials utilizing innovation and positivity. When a child is identified with a disability, amplified attention is called to action in order to increase the focus of specialized learning supports that will ensure meaningful and beneficial education in light of the child’s learning differences and special needs. Special education is a different approach to education than what parents had planned for or may have experienced themselves. It is specially-designed instruction that addresses the unique needs of the child eligible to receive such services. Special education is provided at no cost to parents and includes related services as appropriate to need, in order for the student to access his/her educational program. The federal law governing special education, called the Individuals with Disabilities Education Act (IDEA), supports all eligible students so they may access a free, appropriate public education (FAPE) within the least restrictive environment (LRE).’It also governs how states and public agencies will provide early intervention, special education, and related services to eligible infants, toddlers, children and youth with disabilities. The IDEA provides for each state, as well as the Department of Defense Education Activity (DoDEA) Schools to develop regulations that deliver the regulatory and statutory basis for Special Education services. The federal law governing special education provides for support at two stages over the developmental lifespan of a child to include: • EARLY INTERVENTION (AGES 0-2), available for infants and toddlers who have disabilities and/or developmental delays, under part C of IDEA (U.S. Department of Education, 5/5/2016). Based upon guidelines provided by the IDEA, these services are provided to eligible children, to the maximum 60 August 2019 • EP Magazine | www.ep-magazine.com

extent possible, to include home and community settings where children would be participating if they did not have a disability. According to the U.S. Department of Education (5/5/2016), early intervention services may be provided in another setting only when it cannot be achieved satisfactorily for the infant or toddler in a natural environment. • SCHOOL AGE (AGES 3-21) available to students with disabilities who are determined eligible for special education and related services, under part B of IDEA 2004, which entitles eligible students with disabilities to a Free Appropriate Public Education (FAPE) within the least restrictive environment (LRE). Services are provided to eligible students in accordance to an Individualized Education Program (IEP) in preschools, elementary, and secondary schools or other appropriate settings. As the military family weaves their customs within the fabric of the PCS (Permanent Change of Station) community that they have grown to be a part of, they know that a change of lifestyle is right around the corner. This calls for a solid plan of action. Specialized cooperative provisions are put in place to support smoother transitions to the next school and the subsequent IEP team through guidance and knowledge specific for our militaryconnected families. These are made available to help locate appropriate housing, assure that identified medical and educational specialists are accessible, and provide connections with special education services at the destination school. In addition to considering affordability and lifestyle options, decision-making may also require the new family home to be set up to accommodate specialized equipment and/or situated in close proximity to facilities focused upon unique health or identified education needs. Through the robust range of resources available to military families, coupled with our nation’s special education law, transitions due to PCS season and the resulting settling-in-time moving forward becomes a more streamlined venture. Connecting with some of the military resources listed below will go a long way toward increasing positive outcomes before, during, and after the perpetual transitions.

H U.S. MILITARY SCHOOL LIAISON PROGRAM is a practical beginning point available within the military installation once PCS orders are received. According to Branch-Military Parent Technical Assistance Center (Branch, 5 Top Resources), funded through the Office of Special Education Programs (OSEP), School Liaison Officers (SLOs) are civilians familiar with the unique aspects of military-connected life that can affect a child or youth’s education. SLO’s, also known as Family Resource Specialists or Point of Contact (POC), provide a purposeful mechanism intended to help build partnerships between military families, installations, and schools (Branch, 5 Top Resources). The installation supports parents with the technical realities of the move, but the military family that includes a member with special needs may have to consider a host of specialized needs connected to their new destination. Provision of the school liaison program is an additional resource within the mechanism of support that intensifies the focus of coordination for families. According to the U.S. Department of Defense School Activity (DoDEA), the School Liaison Officer (SLO) serving as a primary point of contact for schoolrelated, military-connected families forges partnerships between the military and schools, upholding the following goals of the program (DoDEA, 4/30/2019): • Identify barriers to academic success and develop solutions. • Promote parental involvement and educate local communities and schools regarding the needs of military children. • Develop and coordinate partnerships in education. • Provide parents with the tools needed to overcome obstacles to education that stem from the military lifestyle. Liaison Directories are available for download specific to each branch, to include Army, Marine Corps, Navy, Air Force, and Coast Guard through the DoDEA (4/30/2019).

BRINGING IT HOME: Through the robust range of resources available to military families, coupled with our nation’s special education law, transitions due to PCS season and the resulting settling-in-time moving forward becomes a more streamlined venture. EXCEPTIONAL FAMILY MEMBER PROGRAM (EFMP) is a program that assists in ensuring military men and women are assigned to duty stations where their family member’s special needs can be addressed. The military family is provided guidance with specific aspects relative to maneuvering the military medical system, as well as guidance relating to the special education system. An array of guides, handbooks, and toolkits are available to for downloaded through Military One Source website at www.militaryonesource.mil, including a Quick Reference Guide to EFMP to help families navigate and understand enrollment, family support, and family travel screening. Coordination services provided by EFMP include: • Identification and enrollment of

family members with special medical or educational needs. • Discovery of services available at the present or future duty station. • Support with information, referrals and non-clinical case management to access services. Three points of entrance to this essential resource are available to set the military family on the road toward discovery of the EFMP (Military One Source, 5/20/2019): • Communicate with the local installation’s Military and Family Support Center. • Obtain paperwork from the EFMP medical point of contact at the local military treatment facility. • Contact Military OneSource and ask for a referral to a special needs consultant.

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U.S. MILITARY H MILITARY INTERSTATE CHILDREN’S COMPACT COMMISSION (MIC3) is a relatively new agreement with all 50 states, the District of Columbia and the Department of Defense Education, to ease educational difficulties and transition challenges that school-aged children of military families encounter when transferred from schools in different states and localities. Through the resources provided to military families, a smoother transition can be afforded to support the existing IEP. According to the Step-by-Step Checklist provided by Branch

(MPTAC), school issues for the kindergarten through 12th grade student (supported through the compact) generally include: 1. Transferring school records, enrollment, immunizations 2. Kindergarten and 1st grade starting ages 3. Special education, accommodations, and modifications 4. Having to repeat courses: course placement and correct program placement 5. Graduation requirements 6. Extra-curricular actives such as clubs or sports

DISCOVERING NETWORKS OF SUPPORT Continued support for our military-connected families is one important way that our nation can demonstrate gratitude, respect and honor for those who choose to serve our country. As is true with much of military life, it is a matter of refinements that will provide the right fit for each family’s lifestyle expectation. In addition to specific branch and military installation supports, there are multitudes of organizations that provide information and services to families who are seeking strategies to support a smoother pathway of transition. Navigating the following four comprehensive websites can serve to strengthen your journey through education and deeper understanding of the processes and resources available:

MILITARY FAMILIES FOR HIGH STANDARDS www.militaryfamiliesforhighstandards.org Assists the family in advocating for high academic standards that limit the hardships faced by students in militaryconnected families. In addition to a wide variety of resources relative to issues and initiatives in the news and guides for support within education systems, A Military Family’s Guide to School Transitions is available for download on the site (Military Families for High Standards, retrieved 6/28/2019).

MILITARY ONE SOURCE www.militaryonesource.mil A comprehensive site with an array of unique topics.In addition to listing MIC3 membership by each state, additional education and early intervention services available on or near installations specific to each state and the District of Columbia can be reviewed within the Education Directory for Children with Special Needs (Military One Source, 5/20/2019).

NATIONAL MILITARY FAMILY ASSOCIATION www.militaryfamily.org This association understands better than anyone that “military families serve, too.” In addition to an overview of EFMP and MIC3, their broad family scope includes policy issues, kids’ education and spouse scholarships, to name just a few. A link to Operation Purple Programs can be accessed as well to include family retreats, healing adventures, and specialized camps for military kids (National Military Family, retrieved 6/28/2019). 62 August 2019 • EP Magazine | www.ep-magazine.com

SESAME STREET FOR MILITARY FAMILIES www.sesamestreetformilitaryfamilies.org Its mission to help kids grow stronger, smarter, and kinder has evolved beyond the original television show, which debuted November 10, 1969. The initial goal of providing support toward ensuring a successful transition from home to school for preschoolers (through building confidence to learn their ABC’s, numbers, and social skills that would give kids a head start needed to be successful) continues and has deepened. Today, Sesame Workshop, a nonprofit educational organization, creates content for multiple media platforms and focuses upon a wide range of issues in support of developing critical skills of acquiring healthy habits and building emotional strength to prepare kids for lifelong learning. Children and their families have access to a range of issues to include math and literacy skills, health, diversity, and military deployments. The Sesame Workshop’s Military Families Initiatives provides increased focus and support to our military-connected children and their families. The website is a free resource and is a place that families can find a broad range of information and multimedia resources on topics to include: • Military Deployments. • Multiple Deployments • Homecomings. •Injuries. • Grief •Self-expression. • Civilian Life. •Routines Through this comprehensive website, military families and children have access to free apps and videos, printable activities, and kids’ games to share thoughts and feelings with each other, with regard to military-connected family topics and experiences– in the bright, engaging, and compassionate style legendary to Sesame Street.

H U.S. MILITARY 7. Deployment 8. Family Care Plan, in support of children living with another family member or guardian. Through MIC3 support, special education services are one of the key education issues addressed in support of those relative to public schools encountered by children of military families, in order to afford the same opportunities for education success as other children. To discover the information pertinent to your child’s situation, an overview of the com-

pact can be explored at www.mic3.net. This link includes a comprehensive wealth of information such as newsletters, frequently-asked questions, parent and school guides, etc. According to MIC3 (Ask for Help, retrieved 6/28/2019), the following sequence of contacts are available to parents to provide guidance and support relative to the Interstate Compact MIC3, in their endeavor to navigating school issues from the perspective of a highly mobile military-connected child or youth:

SPECIAL EDUCATION SERVICES AND FAMILY MOVES Children of military-connected families are a highly-mobile population, and our nation’s schools have a duty under the Individuals with Disabilities Education Act (IDEA) to provide free appropriate public education (FAPE) to students as they move between PCS locales. The Individuals with Disabilities Education Act (IDEA) is the special education law of the land. The Individualized Education Program (IEP) meeting and plan process is the same across the nation, but there are variations to state laws and DoDEA regulations relative to evaluation and identification, and so on, that may require updating within a reasonable and specific timeline upon arrival. Under IDEA regulations, states, school districts, and DoDEAs have definite responsibilities to students when they transfer from one locale to another to provide comparable services that are “similar or equivalent” to what was provided in their most recent placement via their IEP. This includes students moving from one town to another, from one state to another, and even from one state to another country within the U.S. Department of Defense Education Activity (DoDEA). Working with a School Liaison Officer (SLO) will provide the perspective of a specialist in this area across our nation’s schools to include those within the Department of Defense that have some differing guidelines for providing special education services within the worldwide schools of the DoDEA. There are a few pieces to this puzzle to be mindful of when enrolling your child in the new school that will serve to coordinate efforts and ensure a smooth transition: • Sign a release at the new school to enable the receiving district to get cumulative and special education records from his/her previous school. • Bring copies of your child’s most recent evaluation and his/her current IEP with you at the time of registration. In the case where an addendum is the most recent IEP document, be certain to also provide the IEP that this recent document has been added. • Provide information relative to the special education referral process, in the case of a student who is in the initial evaluation process. • In the case of deployment, provide paperwork required by the school to include a copy of your Family Care Plan, any special Powers of Attorney, and/or custody orders, as applicable. Ensure that a guardian of your choosing will be able to attend the IEP meeting and share information with you in the manner you determine. Through mindful parental engagement and collaboration within the realm of education and the IEP process, the highly-mobile children of military families are afforded successful school experiences that will lead to a positive post-school life.

• School Liaison Officer (SLO) is the first point of contact and support for parents. • State commissioners are a secondary point of contact for clarification or support. • MIC3 National Office is a final point of contact suggested if a parent requires further attention on an issue. 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 upon 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.

References Military Parent Technical Assistance Center: The Branch (MPTAC) (retrieved 7/2/2019 from https://branchta.org/). 5 Top Branch Resources Used by Parent Centers: Role of the School Liaison Officer, Tacoma, WA, The Branch Staff. Military Parent Technical Assistance Center: The Branch (MPTAC) (retrieved 7/5/2019 from https://branchta.org/). Step by Step Checklist-Resolve School Issues with the Interstate Compact, Tacoma, WA, The Branch Staff. IDEA: Individuals with Disabilities Education Act (retrieved 7/2/2019 from https://sites.ed.gov/idea/. Subpart B – State Eligibility Sec. 300.101 Free appropriate public education. Military Families for High Standards. A Military Family’s Guide to School Transitions. Retrieved 28 June 2019 from www.militaryfamiliesforhighstandards.org Military Family. Operation Purple. Retrieved 28 June 2019 from https://www.militaryfamily.org/programs/operation-purple/ Military Interstate Children’s Compact Commission (MIC3): Parents. Ask for Help. Retrieved 28 June 2019 from https://www.mic3.net/assets/parent-flowchart.pdf Military OneSource. (May 20, 2019). The Exceptional Family Member Program: A Program for Families with Special Needs. Retrieved 25 June 2019 from https://www.militaryonesource.mil/family-relationships/specialneeds/exceptional-family-member/the-exceptional-family-member-program-for-families-with-special-needs Military OneSource. (May 20, 2019). Education Directory for Children with Special Needs. Retrieved 25 June 2019 from https://www.militaryonesource.mil/family-relationships/specialneeds/special-education-and-childcare/education-directory-forchildren-with-special-needs U.S. Department of Defense Education Activity (DoDEA) (retrieved 6/28/2019 from https://www.dodea.edu). School liaison officers. Last modified 4/30/2019. U.S. Department of Education (retrieved 7/2/2019 from https://www2.ed.gov). Early Intervention Program for Infants and Toddlers with Disabilities. Last modified 5/05/2016.

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MILITARY LIFE MENTAL HEALTH MATTERS IN THE MILITARY

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ust as physical fitness is a central part of military life, good mental health is as important for your well-being, and military and family readiness. Mental health challenges and issues shouldn't be ignored or hidden. There are lots of resources available to help anyone who is struggling with mental health challenges to feel better.

RECOGNIZING SIGNS AND ADDRESSING CHALLENGES EARLY Start by learning to recognize signs in yourself or in someone close to you. Adults and teens who are suffering from a mental health disorder may display any number of the following signs: • Prolonged sadness or irritability • Feelings of extreme highs and lows • Excessive fears, worries and anxieties • Social withdrawal • Dramatic changes in eating or sleeping habits • Strong feelings of anger • Delusions or hallucinations • Growing inability to cope with daily problems and activities • Suicidal thoughts • Denial of obvious problems • Numerous unexplained physical ailments • Excessive substance use

HELP FOR YOU, OR FELLOW SERVICE OR FAMILY MEMBERS Reaching out is the first step towards recovery. These resources can get you started: • Check your mental health (www.myhealth.va.gov/mhv-portalweb/web/myhealthevet/health-wellness/mental-health). If you are wondering if you have symptoms of a specific mental health condition, you can complete a brief screening tool and get instant feedback. This tool from the Department of Veterans Affairs is confidential and anonymous; none of the results are stored on your account or sent anywhere. • TRICARE (tricare.mil) is the health care program for military members and their families. The program is divided into two regions (East and West), and offers overseas assistance. TRICARE may provide coverage for medically necessary mental health services. Mental Health Care Services offers outpatient psychotherapy for up to two sessions per week in any combination of individually or as a, family, group or collateral sessions. The TRICARE Military Treatment Facility Locator (https://tricare.mil/mtf) is the locator tool for military treatment centers. • The National Institute of Mental Health (https://www.nimh.nih.gov/index.shtml) provides information on a variety of mental health topics and list current clinical trials that allow persons to access treatment for free. Call 866-615-6464.

• Mental disorders can lead to substance use disorders. The Substance Abuse and Mental Health Services Administration (www.samhsa.gov) offers information about prevention, treatment, recovery and more.

MENTAL HEALTH FOR CHILDREN AND YOUTH Signs in adolescents: Many symptoms in adolescents may be similar to those in adults, but you may notice other characteristics, including: • Defiance of authority, truancy, theft or vandalism • Decrease in grades • Intense fear of weight gain • Prolonged negative mood, often accompanied by poor appetite or thoughts of death Signs in younger children and preadolescents: Young children and preadolescents may display some of the following: • Changes in school performance • Poor grades despite strong efforts • Excessive anxiety (such as refusing to go to bed or school) • Hyperactivity • Persistent nightmares • Persistent disobedience or aggression • Frequent temper tantrums Finding help: For children’s mental and behavioral health care, reach out to TRICARE (https://tricare.mil/mtf). Mental and behavioral health concerns and conditions vary greatly in children and adolescents from adults, and special considerations apply for children of military families.

WHEN TO STEP IN AND HELP, OR ASK FOR HELP Don’t let stigma stand in your way of helping – or reaching out. An estimated one in five American adults experience a diagnosable mental health disorder each year. Many of these conditions are common and treatable; yet many people suffer in silence because of shame and stigma. Facing issues early is a sign of strength.You wouldn't hesitate to seek help for a physical ailment. So reach out for assistance with depression, anxiety and other mental health issues, and encourage others to do the same. If you need help immediately: Suicide is a serious issue for service members and their loved ones – and suffering from a mental health disorder can increase the risk. If you or someone you know is at risk, the Military Crisis Line (www.veteranscrisisline.net/ActiveDuty.aspx) is available 24 hours a day. Call 1-800-273-8255 and Press 1. You can also start a conversation via online chat or text (838255). Note: Military OneSource does not provide medical counseling services for issues such as depression, substance use disorders, suicide prevention or post-traumatic stress disorder. This article is intended for informational purposes only. Military OneSource can provide referrals to your local military treatment facility, TRICARE or another appropriate resource. – Military One Source

64 August 2019 • EP Magazine | www.ep-magazine.com

PUZZLES & CAMO

SHELLY HUHTANEN

Problems in the Pew Even though there is a high probability that Broden will giggle again in a church service, our family is going to try again. Yes, I will be anticipating some judgmental stares and maybe even some eye rolls. Mark and I have decided that we are still going to try. We’re going to try because our family should be allowed to worship. Giggles and all.

Another PCS move is in the books. This means finding a new normal and meeting a new group of people who will be our neighbors for the next few years. The A word seems to have been coming up more and more lately as people living around us ask us questions about our boys. Many are trying to find playmates for their children so it’s understandable that they ask us about our children. On a walk one morning, we met one of our neighbors on the corner who happened to be a Chaplain. He was very kind and welcoming and encouraged us to give church a try. After explaining to him Broden’s autism, he assured us that they were laid back at the service and that we should attend that weekend. That Sunday, the family scramble commenced. Like clockwork, I misjudged the time it would take to make sure every human in our house was bathed, hair combed, and teeth partially brushed. Ironing my pants became a frivolous expectation so I did low squats to the car in the hopes of stretching out my wrinkled pants. Who were we kidding? In Huhtanen fashion, we were late, yet again. We shuffled into the worship hall while I had my hand pressed against Broden’s back. He stiffened his legs and started to dig his heals into the carpeted floor. The church was small with only about five or six pews from the small stage. A typical family may think, “Wow, how intimate.” Our family had a completely different view, “Wow, we can’t hide or attempt to blend.” Yea, this was going to be interesting. We were holding it together pretty good during the singing portion, but things took a nose dive half-way into the sermon. Halfway into the sermon talking about faithfulness, Broden

began to giggle louder and louder. The more we tried to quiet him down, the louder and more frequent his giggling became. Suddenly, I look up and to the right and I saw it. I saw the look. You know, the judgmental kind. The kind of look that when you are feeling at your most vulnerable, they make you want to slither out of the room and never be seen again. My husband didn’t see it, but I did. Before my husband could respond, I grabbed Broden and dragged him out of the pew and into the front lobby to sit on the couch. As I sat there on the couch with Broden, the only ones in the front lobby area of the church, I was reminded again that we were different. After the sermon and the music started again, I lowcrawled with Broden back to the pew to finish out the service. Once the service was over, the four of us ran out the door and to our car for a quick getaway. Maybe the congregation didn’t notice me dragging my child out by his arm.

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Who were we kidding? They saw everything. The next morning, we saw the Chaplin and his wife again while we were walking our dog. The cul de sac was too small to dodge the possible confrontation. Running back into the house to hide would probably look too suspicious. “It was great to see you at church yesterday,” said the Chaplain as I tilted my eyes down knowing that he saw me drag Broden out of church during his sermon. I responded, “Well, I got a look from someone in the next pew so I grabbed him and got out of there. He can be loud.” I know it wasn’t his fault that one of the churchgoer’s behavior made me feel unwelcome, but I guess the wound was still a little fresh. I was probably angry at myself for leaving the pew instead of knowing that both of us had a right to be there to worship. The saucy side of me wanted to look over at her and wave while yelling, “Yay Jesus! He loves us all no matter how loud we are! Thank goodness for that,

right?” But I didn’t. We’ve only been at this installation for two weeks and I knew I should at least try to be here for a month before being known as THAT family.

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es were nearly twice as high as compared to children with no chronic health conditions.” The reason is plain and simple. In church, expectations are high concerning what is acceptable behavior in the congregation. These high expectations include children. When a child is judged by not meeting behavioral expectations, the child’s family feels the burden and questions the c o n g re g a t i o n ’s acceptance. In the end, families may not return in fear of being judged yet again.

“In church, expectations are high concerning what is acceptable behavior. When a child is judged by not meeting behavioral expectations, the child’s family feels the burden and questions the congregation’s acceptance. In the end, families may not return in fear of being judged yet again.”

y experience this past weekend is not rare and probably occurred many times around our country this past Sunday in many congregations. A National Survey of Children’s Health conducted by the Centers for Disease Control and Prevention stated that “the odds of a child with autism never attending religious servic-

Even though there is a high probability that Broden will giggle again in a church service, our family is going to try again. Yes, I will be anticipating some judgmental stares and maybe even some eye rolls. Mark and I have decided that we are still going to try. We’re going to try because our family should be allowed to worship. Giggles and all. • 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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