LiveSpecial 2018-19

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2018-19 Northeast Ohio Edition
















2018-19 Edition FEATURES




Commmunication apps and programs for those with special needs.


Helping people with disabilities transition into the workforce.

15 community members at special event.

EDUCATION 10 Making a seamless transition to high school.

your child’s developmental milestones.


Learn early signs of dyslexia and what to do if your child has a learning difference.

13 Learn the benefits of music therapy for adults.

14 Establish an optimum home


setting for children with sensory processing disorder.


15 Top 8 reasons why

communication matters.


Helping loved ones live more comfortably.

08 Overcome travel challenges


whether on the road or in the air.


FAMILY MATTERS 18 Supporting a neurotypical

People doing extra for the special needs community.

sibling to an individual on the autism spectrum.


Photos by Kim Stahnke


20 Respite care provides peace

of mind for the whole family.

21 Camp offers respite and recreation.

Separate myths from the truth about epilepsy and seizures.

HEALTH 34 Taking the bite out of dental


visits for patients with special needs.



Find local resources for families.

44 Opening the door to benefits and services.



32 NCJW/Cleveland honors

12 When to seek services during


Working through the IEP process.

helping sleep issues and more.





05 Miracle League Park opens,


GADGETS, GEAR Books, toys and other products & GOOD to help children with special needs READS and their families. 2018-19

PLANNING 22 A guide to special needs

planning by the numbers.

42 What’s so special about special needs trusts?

45 Legalities of housing accessibility.

THE MISSION is a free and comprehensive Northeast Ohio online, go-to resource for all things required to support individuals with special needs and their families. includes an easy-to-navigate community resource guide that provides the most current medical, social and rehabilitative services and access information needed to help support any age person with special needs.

NEW FEATURES: Cleaner w ay to search

will be launching fresh, M o r e m o d e ar n l o onew k website this year. and feel

U s e r - f r i e n d l y Carefully experience curated with compatible with all d e v i c e s user experience

in mind, the redesigned website will deliver a:




Email to receive firsthand information and updates. 2018-19




’ve learned so much that I thought I already knew from reading the stories in our fourth annual edition of this magazine. For example, I really thought that you should put a spoon under the tongue of a person undergoing a seizure to prevent tongue injury. The article about seizures and epilepsy taught me otherwise. I learned that sensory processing issues qualify as special needs. This knowledge leads me to inform our readers that this magazine and the website are not only for people with “traditional” special needs. They're also for people with non-traditional and short-term disabilities. People undergoing hip or knee replacement, seniors facing ambulatory issues, or adults whom accidents have temporarily incapacitated can benefit from’s articles and websites. Individuals suffering from fibromyalgia, food intolerances or migraines induced by smells also have differences that need coping strategies. Most folks will encounter a short-term disability in their lives. Others have longterm differences that they don’t consider traditional “disabilities,” though they surely are disabling. Experiencing these conditions can inspire empathy, admiration and understanding for individuals with more recognized long-term, constant differences such as autism, cerebral palsy or deafness. And the more one can identify with special needs, the more inclusive one’s world becomes. In this issue, you’ll also learn about employees who find workplaces to support their special needs and employers who see productivity in place of difference. You’ll begin to understand the challenges faced by parents who have children with sensory processing disorders. And perhaps you’ll have an “aha” moment when you realize you yourself have a special need that merits further attention. Maybe you’ll discover new ways to cope with your own temporary disability. Possibly you’ll unlearn your own myths about special needs, just as I did.







26055 Emery Road Warrensville Heights, OH 44128 PRESIDENT Elaine Geller EXECUTIVE DIRECTOR Mindi Axner 216-378-2204 ext. 103 VP COMMUNICATIONS Leslie Royce Resnik LIVESPECIAL COORDINATOR Wendy Spitz 216-378-2204 LIVESPECIAL ADVISORS Jennifer Boroff Elaine Eisner Cindy Glazer Scott Gohn Laura Kuntz Nessa Siegel

Mindi Axner PUBLISHER Brad Mitchell




t’s been a genuine privilege working alongside the National Council of Jewish Women/Cleveland again this year to produce another publication that reaches the wonderful families in our region caring for individuals with special needs. This annual project brings out the best in our Northeast Ohio Parent magazine team as well as the passionate group from the NCJW who founded the website as a helpful resource years ago. We have seen and heard beautiful stories from many families we meet at area events who are thankful that this resource guide and companion website have served to point them in the right direction for services, as well as provide inspiration. If you know of a group, school, organization or business that could serve as an additional distribution point for free copies of Resource Guide, please contact us at or 330-822-4011.

Brad Mitchell

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EDITOR Angela Gartner MANAGING EDITOR Denise Koeth ART DIRECTOR Laura Chadwick CONTRIBUTORS Leigh Goldie, Nessa G. Siegel, Jason Culp, Shana O’Malley-Smith, Kerry Prater, Lindsey Geiss, Leslie R. Resnik LiveSpecial Resource Guide is published by Northeast Ohio Parent Magazine and Mitchell Media LLC PO Box 1088 Hudson, OH 44236 330-822-4011​ Copyright 2018 by NCJW/Cleveland and Northeast Ohio Parent


TECHNOLOGY Gov. John Kasich signed the Technology First Executive Order, making Ohio the first state in the country to place an emphasis on expanding access to technology for people with developmental disabilities. Under the executive order, the department will work with county boards of developmental disabilities to ensure technology is considered as part of all service and support plans for people with disabilities. The executive order is not a technology-only policy, but aims to help people learn more about how to use technology to improve their quality of life and how they can experience more independence and personal freedom. Supportive technology, which helps a person accomplish a task or provides care from a distance, includes two services: assistive technology and remote support. Assistive technology includes devices like those that can turn off a stove when a person isn’t using it or cell phone applications that provide step-by-step assistance with recipes. Remote support services offer a

A good night’s sleep is essential to GET everyone’s menBETTER tal, emotional and SLEEP physical well-being. According to a 2014 Better Sleep Counsil survey, 79 percent of Americans claim they would feel better and more prepared for the day with an extra hour of sleep. Being deprived of sleep can negatively impact a person’s immune system, which can lead to weight gain, heart disease and other conditions affecting the body. A few consequences of insufficient sleep include irritability, exhaustion, becoming easily distracted and making unsound decisions. It also can impair learning, memory, alertness, concentration, judgment, problem solving and even reasoning with others.

FIRST Helping Those who Drive Communicate with Law Enforcement

person with a developmental disability the support of a direct service provider even when the provider is not in their home with them. The upcoming assistive technology service rule will make the purchasing process simpler for all Medicaid waivers and ensure a person’s provider will have continued access to education for the devices. All Medicaid waivers cover the cost and maintenance of equipment used for remote support service delivery. DODD expects the proposed assistive technology rule to go into effect in early 2019. Visit: for more information.

An individual with a medically diagnosed communication disability who drives, or someone who regularly has a passenger with a communication disability in their vehicle, can voluntarily enroll in a database that connects to the Law Enforcement Agencies Data System (LEADS) under Ohio’s Communication Disability Law. According to House Bill 115 Communication Disability Self-Identification law, “Officers approaching a vehicle will be notified that there may be someone with a communication disability in the vehicle prior to approach in order to reduce any potential misunderstandings or communication problems.” Self-identifying in the database is voluntary. Also, people who are in the program don’t have to disclose personal medical information and officers will not know the type of communication disability. Those who wish to participate can complete a verification form and take it to their licensed medical practitioner, who can validate the individual has a communication disability. Visit: communication-disability-law to learn more.


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Try making sleep part of your to-do list and plan your bedtime like you would any other appointment. Hot baths, a good read, or soothing music are just a few ways to relax before bedtime. Work on ways to make your sleep schedule consistent. When a person eats and drinks could impact sleep. Try to finish eating two to three hours before bedtime, so your whole system is ready to relax. Caffeine stays in your system longer, so make it a morning-only drink or stick to other beverages in the afternoon and evening.


A dark, quiet, cool, cozy room is the perfect atmosphere for a great night’s sleep. The bed is an important factor in the bedroom’s comfort level. The mattress needs to be big enough that a person can move freely, new enough that it doesn’t cause aches and pains, and comfortable enough that it supports sleep. — Terry Cralle, a registered nurse, certified clinical sleep educator and Better Sleep Council spokesperson. 2018-19



EveryoneCAN PLAY

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“We had great community support,” Moran says, citing organizations that provided funding, including Lake Health Hospital Systems, which has naming rights to the field; The Lubrizol Corp. in Wickliffe, which has naming rights to the inclusive playground; The Lake County Captains; The Cleveland Foundation, and many more. The Lubrizol Miracle Playground, situated next to the baseball field, features numerous pieces of accessible playground structures. The surface of the playground is a thick and soft rubberized material. The six-team league currently plays on Saturdays during its season at Miracle League Park. Volunteers or family members serve as “Buddies,” who are on the field helping the players. “He is just so excited to play,” Montz says about her son Mason. “I love the idea of this organization giving them their own special

field. They learn social experiences and being part of a team.” The baseball field features a smooth, rubberized surface developed especially with the needs of folks in wheelchairs, scooters or walkers in mind. Both dugouts are completely accessible to players with wheelchairs or walkers, and each dugout also features a calming, or sensory, room. Moran notes the surface of the field also is latex-free. “I love to see these kids playing, both on the playground and on the field; this is what it’s all about,” Morley says. “‘Every child deserves to play baseball’ is the Miracle League of Lake County’s mission and today that is what is going on.” “It’s overwhelming and truly heartwarming,” Moran says. “It’s just so wonderful to see them all smiling.” Visit



ason Montz, 12, of Painesville, happily hugged his mom, Anne, after he crossed home plate at the opening day game at Lake Health Miracle Park in Eastlake. His team, the Cleveland Indians, is one of six teams in the Miracle League of Lake County, which provides baseball for children and adults with special needs. The project, which began in 2016, was spearheaded by the Lake County Ohio Port and Economic Development Authority, along with the help of Judy Moran, a former Lake County commissioner who is the president of the Miracle League of Lake County, and Eastlake Mayor Dennis Morley. This park was the first fully accessible baseball field in Lake County and the result of a $1.2 million project funded by private donations and grants from the community and organizations in the region.

By Angela Gartner

BOOK CLUBS FOR ALL By Angela Gartner



love for literacy, reading and stories is important to all community members. Next Chapter Book Club, a national initiative, provides a community-based book club program for people with special needs. In Northeast Ohio, Westlake Porter Public Library and Lakewood Public Library, in partnership with GiGi’s Playhouse Down Syndrome Achievement Centers, provide a Next Chapter Book Club for community members. Lizz Maxwell, Site Coordinator at GiGi’s Playhouse, says Lakewood Public Library, located across the street, came to the achievement center, which serves all ages and provides free therapeutic and educational programming to individuals with Down syndrome and their families, about providing a book club. The club meets once a week at the library or other community venue and has a maximum of eight participants who are ages 18 and older. Maxwell says the national organization provided training for the club, which started about a year ago. The inclusive club is not just for proficient readers, but for all levels, including non-readers who want to listen to the stories. “It offers an opportunity for them to socialize and improve their literacy skills,” Maxwell says. “Also, for non-readers who participate, it helps them build up their confidence. Everyone is engaged and patient with each other.” It also provides some fun, too. Recently, the group met local author Shelley Pearsall of “All Shook Up,” a book

they were reading. The book features a teenager who isn’t happy that his dad has become an Elvis impersonator. The club members even got to meet an Elvis tribute artist who provided an extra twist relating to the book. “This is a way for them to be out in the community and connect with each other,” Maxwell says about the club. “They are part of a club or group, meet new friend(s) and share things.” For more information about the group, email or if you would like to learn more about Next Chapter Book Club, visit

WESTLAKE LIBRARY HOSTS A NEXT CHAPTER BOOK CLUB Rebecca Shook, special needs resources librarian, says the club has been around for a little over a year. “We learned about the program through research of possible program ideas and were in a place to be able to receive the trainings and move forward with the club,” she says. “Hosting NCBC is important to us for many reasons, but ultimately because the public library is a reflection of each member of the community. Our goal is always to create a welcoming environment where all people feel safe and included in what the library has to offer. “


Amelia Bedelia Means Business By Herman Parish, illustrated by Lynne Avril

Lucky Dogs, Lost Hats, and Dating Don’ts


By Carl Hiaasen

By Thomas Fish and Jillian Ober

To find out more about the club or volunteer opportunities, contact 2018-19


Take a Family Trip

Overcome travel challenges whether on the road or in the air

Like an estimated one in 59 children, Noah has autism spectrum disorder. Travel can be taxing for any child, but for those on the spectrum, new sights, sounds, sensations and crowds can amount to sensory overload. Autism affects each person differently, but often it causes heightened sensitivity to light, noises or foods, as well as anxiety in social situations. Noah needed the sights, sounds, rhythms and routines of home. So much so, his mother Shari Goldberg recalls, that the whole family stopped traveling together. “My husband and I would tag team,” Goldberg says. “He’d take trips with our other son, Jackson. Then I’d take Jackson, and my husband would stay home with Noah.” And things continued that way — for more than a decade. This spring, at age 21, Noah finally reached a milestone: he successfully traveled with his family to Jackson’s college graduation in Poughkeepsie, N.Y. Their mother credits meticulous planning for the uneventful nine-hour car ride. Here are some tips from Autism Speaks for traveling by plane, train or automobile.

CREATE A TEACHING STORY Draw pictures or download photos showing what to expect — your transportation, destination and activities — to make a short, customized story. Though Noah speaks very little, he likes words and pictures. His mother explains, “He has trouble transitioning from one activity to the next, so the pictures really helped him.”


oah Goldberg of Pepper Pike was 10 years old when his family flew to a wedding in California wine country. But the very things that most children enjoy — the airplane, hotel, pool and a break from the routine — threw Noah’s world into turmoil.

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PRACTICE MAKES PROGRESS “Adventures with Autism: A Guide to the Airport Experience” is an example of a story used for Autism Speaks’ Blue Horizons for Autism events with JetBlue, where families practice everything from ticket lines to security checkpoints and taxiing around the runway. So far, 4,000 people have attended events in almost a dozen cities. As one parent put it, “The smile on my son’s face said it all! He has never been on a plane before, and now we know that it is possible.”

PLAY IT SAFE About half of all people with autism are prone to wandering. Carry copies of your family’s wandering emergency plan, and consider safety products such as wearable ID tags. The Wallet Card Project is a free, downloadable ID tool for teenagers and adults. PREP YOUR ENVIRONMENT Call ahead to ask your hotel for a quiet room (think corners), and request an in-room refrigerator if your child follows a special diet. Also, ask about safety precautions, such as door alarms or barriers to pools or bodies of water. The same is true if you’re staying with friends or relatives. CONTACT GUEST SERVICES With advance notice, airports, train stations and restaurants will provide early boarding, special meals or pre-registration of service animals. If possible, try a “dress rehearsal,” with a quick visit to a hotel near home. OFFER CHOICES Allowing your child to feel that he or she is in control can ease anxiety. Let your child pack a backpack with a calming toy, books, an iPad or snacks. Also, bring ear plugs, noisecanceling headphones or fidget items that are comforting. RELY ON TEAMWORK A family watch system may reduce stress for everyone. Having one person at a time provide supervision for your child and rotating that responsibility will give you greater peace of mind. BON VOYAGE! Preparation and patience paid off for Noah’s family. “Be realistic,” Goldberg says, “but also let your child rise to the occasion. It’s amazing what our kids can do.”




Transition to High School Helping teenagers and their families make a smooth educational plan By Julie Billiart Schools


oving from middle school to high school can be both exciting and challenging for students. It’s a time when they will be meeting new people, learning from multiple teachers, participating in different clubs and activities, and gaining more independence. For teens with special learning needs, the transition will go more smoothly if parents plan ahead to make sure all of their accommodations are in place when they arrive at their new school as a freshman.


If you are the parent of an eighth grade student, a good time to get the ball rolling is in January. Whether your child has an individualized education plan (IEP) or a 504 Plan, now is the time to begin contacting your child’s high school to learn who will manage the IEP or 504 Plan process for your son or daughter. Middle schools often will initiate the transition process, but you shouldn’t assume this will automatically occur. Schedule a time to meet with the high school and middle school intervention specialists, jointly if possible. Find out exactly who will be part of the IEP or 504 Plan team and which representatives will be present at the first high school meeting. BEGIN GATHERING YOUR INFORMATION AND DOCUMENTATION

Hopefully your child’s IEP or 504 Plan team in middle school was understanding and accommodating, but now you are entering into unchartered waters with a new team. While every family’s experiences are different, ask other high school parents what to expect. Prepare a folder that contains current copies of your child’s IEP or 504 Plan, their most recent report cards, progress reports, homework, correspondence with teachers,

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doctors’ letters, health records, standardized tests, evaluations, medication lists and instructions, as well as your own notes and observations about your child’s academic performance and behavior. If you do not currently have another child attending the high school, ask for a copy of the student handbook and schedule a visit to tour the building and its classrooms before your team meeting. ADDITIONAL ACCOMMODATIONS MAY BE NEEDED

This is your chance to identify any needs that currently are not being met so new accommodations can be written into your child’s high school education plan. While your middle school may have been flexible with absences due to chronic illness, find out what the high school’s attendance policies are and whether a shortened schedule may be an appropriate option. Use the following questions to determine whether your child’s new IEP or 504 Plan will meet all of their needs: • Is my child currently struggling in school, and if so, in what areas? • Will my child be required to meet all graduation requirements? • Do any of these requirements need to be modified or waived (i.e. P.E. classes)?

• What goals do you want your child to reach? • What methods will be used to measure my child’s progress? • Should my child attend school for all or part of the day? What does his or her doctor recommend? • Will my child require a personal aide for some or part of the day? • What transportation accommodations are needed? • Will my child’s strengths and weaknesses be considered when being placed in core classes and elective classes? • Will my child be able to take breaks if needed? If so, what staff member should he or she report to and where will those breaks occur? • What accommodations will be made for my child to participate in extracurricular activities? • Does the high school have a full-time nurse on staff? Who dispenses medication if needed and what is the process? • What behavioral and discipline methods are used by teachers for students with special needs? • Should I sign any school release forms granting them permission to speak with my child’s doctor or medical team? (Note: You do not need to agree to do this. Giving your school permission to do so removes any control you may have over their conversations. On the other hand, doctors can provide validation for your child’s diagnosis and can make recommendations for accommodations, so weigh your decision carefully.) ENCOURAGE YOUR CHILD TO PARTICIPATE IN THE MEETING

Depending on your child’s maturity level, you may want

to consider bringing them to the first IEP/504 Plan meeting with the high school, which may take place at their current school. This is an opportunity for your child to practice selfadvocacy skills and to discover that they do have a voice in shaping their future. If this doesn’t sound like a good idea right now, trust your instincts and wait another year or two. However, recognize that by age 16 a student needs to know how to advocate for himself or herself, communicate their needs, and ask for help in order to be successful in high school and beyond. When students transition to college, parents are no longer invited and often are not permitted to participate in the accommodations process. At the post-secondary level, students must work with their college’s student disability office to provide documentation and make their own request for accommodations. IEP and 504 Plans do not carry over to college but can be used as a documentation source. ENSURING YOUR CHILD’S SUCCESS

If you feel your child’s plan is not being adhered to at the high school level, start by talking to your child’s teacher. If the issue is still not resolved, then approach the school’s administration. Your child’s educational rights are protected under law and you always have legal options if necessary to advocate for those rights. If you need help navigating the complexities of education law, consider reaching out to your state’s Department of Education or Protection and Advocacy Center before contacting a lawyer.




hould my baby be sitting up, walking or talking by now?” Parents delight at the first sightings of milestones in their baby’s development. Their baby’s first smile, first steps and first attempts at talking reassure parents that their baby is developing as expected. However, families of children with a developmental delay or disability, whether diagnosed at birth or later, may feel more anxious and uncertain about their child achieving his or her developmental milestones and not knowing what

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is considered “normal” for their child. Through early identification and intervention services, children with special needs have the best opportunity to reach their full potential that extends through adulthood. There is now compelling research confirming that the experiences of a child during the early formative years profoundly influence brain development, and that early intervention services help prevent the achievement gap, reduce the need for special education, increase the likelihood of healthier lifestyles, and reduce overall social costs (for more information, visit How can parents know if their child would benefit from early intervention services? Starting at age 2 months, it is important to check babies’ progress in achieving milestones. Resources are available on the Centers for Disease Control and Prevention website,, for tracking milestones and

include a parent kit, checklists and growth charts. The CDC even offers its Milestones Tracker app for download on cell phones. If parents are concerned or have questions about their child’s development, it is a good idea to talk first to the child’s pediatrician. Parents should tell the doctor what they have observed. They also can visit the Ohio Department of Developmental Disabilities at to arrange for a free assessment by qualified providers of the Help Me Grow program in their community, such as the Achievement Centers for Children. The Achievement Centers for Children was a pioneer in providing family-centered early intervention services beginning in 1973. Its comprehensive array of programs includes family support services; physical, occupational, and speech therapies; and autism school. It also is a Help Me Grow Home Visiting program provider. For more information, visit or call 216-292-9700.



to improvise, add his own endings to n accomplished pianist who reads songs, and make a few changes in each music, David began individual and piece to make it his own. He produced group music therapy at The Music recordings of holiday songs, making Settlement (TMS) as a preteen to address many decisions in the process. concerns related to his Down syndrome. Through asking questions and contribNow an accomplished pianist who reads uting his own ideas, David has expanded music, David began individual and group his ability to express himself. His mother music therapy at The Music Settlement particularly noticed his increased matu(TMS) as a preteen to address concerns rity and that he talks to people more. related to his Down syndrome. Currently “He used to be reticent or embarrassed nearly 50 years old, David’s decades of in front of a crowd; he is more of a showTMS music therapy have not only helped man now,” his mom said. “Not only has his music skills, but improved his ability to music therapy helped him accept new challenges, make advance along a musical path, his own decisions, and exhe advanced a lot in his bepress himself. havior, too.” Adults with autism or other MUSIC THERAPY FOR ADULTS The Music Settlement, a comdevelopmental disabilities, By Ronna Kaplan, MA, MT-BC, and Lynn B. Johnson, MFA munity music school, is a place medical diagnoses, or mental where everyone, whether living with a disability health issues and their caregivers may benefit For David, practicing how to practice or not, can be themselves, creatively. Programs from group or private music therapy. Sessions helped increase his independence. He in music therapy, music, and early childhood are customized to fit each individual’s interpays close attention to the difficult parts education are offered at the 106-year-old orests, strengths and goals, and are offered in of a piece and has integrated his practice ganization’s University Circle campus and at community settings or in people’s homes. routine into daily life. its new campus in Ohio City. TMS’s Center Music therapy might provide opportuHe also doesn’t like to be wrong or put for Music Therapy offers home-based music nities for adults to build on foundations of on the spot, but his music therapist encourtherapy to adults and provides community outtheir unique gifts and abilities, develop or ages him to try things he feels are difficult. reach in educational, medical, social service and continue relationships over time and across Decision-making can be hard for him, recreational settings. For more information, visit important life cycle events, and improve so increased ownership of music-making quality of life. is emphasized. The therapist taught him

Constancy, Connection, Creativity 2018-19







ou adore your sensitive, active or “spirited” child, but his sensory needs pose unique challenges. Here are some tips from an occupational therapist for creating a supportive environment at home for a child with sensory processing disorder. EXPLORE YOUR OWN SENSORY NEEDS. Are you overwhelmed in

crowded places or bothered by background noise from fans or outdoor construction? Do you enjoy perfume, or does the smell give you a headache? Complete a sensory questionnaire or consider your own sensory cravings and sensitivities to build your skills as a sensory detective, which will help you anticipate your child’s needs. FOLLOW A ROUTINE. Children with

sensory processing disorder often find comfort in routines, and benefit from the use of a visual schedule that they can easily understand. Putting one together

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can be as simple as gathering pictures of your child completing routine activities and putting them in order for the day or week. Your child’s speech or occupational therapist can assist you in designing a visual schedule that caters to your child’s specific needs and strengths. DEVELOP A SENSORY DIET. Once you

understand what kinds of sensory experiences your child dislikes or craves in order to self-regulate, you can incorporate those sensory activities into your daily routine. Push-ups and jumping jacks before school, and snuggles and a weighted blanket for calming at night are a few examples of sensory diet activities that might be helpful for a child with sensory processing issues. Your child’s occupational therapist can help you develop a sensory diet that matches your child’s unique sensory needs.

sensory-based meltdowns. Instead, avoid them by following consistent routines, honoring your child’s sensory needs, and consistently enforcing rules and consequences. Learn to discern the difference between a tantrum and a meltdown caused by sensory overload, and offer support to help your child calm himself before giving consequences. REACH OUT. Establish connections

with other parents who are raising a child with sensory challenges. Join a support group in your community or online. You are not alone; connecting with others going through the same experiences can be very helpful. Total Education Solutions (TES) has been a provider of special education services in Ohio since 2007. With the opening of its new Columbus Clinic in the Fall of 2018, TES will expand into home-based and clinical service. For a free consultation, call 877-TES-IDEA or visit



Top 8 Reasons Why Communication Matters

he choice of the form communication takes is a personal one. Hearing and speaking are the most common forms of communication. Some people may use American Sign Language (ASL); still others may choose captioning or lip reading. Communication by definition is the transmitting of information by speech, writing or signs. The loss of the ability to communicate can mean loss of quality of life. Without the ability to communicate you…

1…wouldn’t be able to get a job. All jobs — from ditch-digger to CEO — require the ability to convey information. Your effectiveness at work, including interpersonal skills, is rooted in your approach to communicating with people. Hearing what is being said and understanding your objectives all require your ability to communicate effectively. 2…wouldn’t be able to signal for help. You finally got to take that trip to Italy — only to find yourself lost in a strange town. How can you ask for help? Being unable to communicate a need can be scary, especially in unfamiliar surroundings. 3…wouldn’t be able to learn. Who doesn’t love curling up with a good book? Reading, writing and arithmetic all require the ability to understand the meaning of letters, words and numbers. Literacy is tied to communication, as is all learning.

4…wouldn’t be able to express your ideas or feelings. Everyone wants to feel their opinion matters. But first, they need to be able to communicate that opinion. 5…wouldn’t be able to socialize. Statistics show that people with hearing loss, aphasia (loss of language), or other communication challenges tend to withdraw more and more from social situations. This creates a downward spiral where they feel lonely and depressed. Statistics show that socializing with friends, family and groups not only keeps the brain sharp but improves overall health and well-being. 6…wouldn’t be able to explain a problem. When the car engine makes odd noises, it’s time to schedule maintenance. This requires the ability to find the appropriate source of help, communicate the issue and arrange for repair. 7…wouldn’t be able to live independently. Without the ability to communicate and understand complex ideas you would feel completely dependent on others for your life’s needs. 8…wouldn’t be able to say “I love you.” Although hugs and kisses convey as much heartfelt meaning as the words “I love you,” it is not always possible to express feelings in a physical way, and not every relationship is

a physical one. Communication is the greatest gift we have and can give to each other. Most of us take our ability to communicate effectively for granted. Unless or until something changes our ability, we pay very little attention to it. But it’s important to know that services and programs exist to help those who need it, when they need it. Whether it is the family whose infant did not pass its hearing test at the hospital, the child who stutters, the stroke survivor who needs speech therapy, the deaf individual who needs an American Sign Language interpreter, or the Baby Boomer who is beginning to notice a hearing loss, help is available at Cleveland Hearing & Speech Center. If you or someone you know has a communication issue, visit or call 216-231-8787. 2018-19



KEEPS US ON THE GO! By Tina Moreno, speech language pathologist with the Cuyahoga County Board of Developmental Disabilities


e all rely on technology every day, but it can be a game changer for those with disabilities. The Cuyahoga County Board of Developmental Disabilities (CCBDD) has an entire team committed to ensuring individuals don’t miss a beat when it comes to living, working, playing and learning in the community. Its assistive technology and children’s services professionals work to provide equipment, tools and gadgets to meet the unique needs of people with disabilities. Here’s a glimpse into a day in the life of Jared, a young man with autism, highlighting the apps and technology he uses on his smart device to be as independent as possible.


Create custom books using text, drawings, audio recordings, images and pictures taken with the iPad’s camera. Books can be read aloud, stored in iBooks, printed, and shared in PDF format. [$4.99]

Jared independently reads through a story created by his mom the night before. Each page details what he can expect to happen throughout his day so that he’s prepared for experiences that stray from his normal daily routine. Jared reads about taking the bus to the zoo, viewing the animals, enjoying lunch with his friends, purchasing a souvenir, returning by bus and catching a ride home from his sister. LIFE360

With iPhones or Android phones, view family members on a map, communicate with them, and receive alerts automatically when your loved ones arrive at home, school or work. [Free]

Using their phones, his parents and siblings follow Jared’s route as he travels with his friends via bus to the zoo. They are automatically alerted when he returns to the bus stop at the end of the day, enabling his sister to meet him there and give him a ride home.

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A customizable communication app available through iTunes [$299.99]

In the morning, Jared requests the pancake syrup that is missing from the breakfast table. He talks excitedly about his visit to the zoo planned for the day and reminds his mother that he can’t miss the bus. From his communication system, Jared sends his uncle a text alerting him of his fun day ahead with his friends.


Create custom visual schedules using symbols, images from the photo library or pictures taken with the camera. Check off tasks as they are completed. Set timers and tokens for incentives, if needed. Add videos to support learners. [$14.99]

Jared uses his First/Then app to check off the tasks as he completes them. He gets dressed, eats breakfast, brushes his teeth, walks the dog, grabs his lunch and puts on his jacket before getting out the door on time — all without reminders from his mom. 2018-19



Sibling Success

How to Support Your Neurotypical Teenager in an ASD Family


Milestones Autism Resources

ftentimes, when we talk about Autism Spectrum Disorder (ASD), the focus is placed on the individual with autism or their primary caregivers. Meanwhile, the experiences of the siblings in these households frequently are overlooked. Having a sibling with autism can introduce some very real challenges growing up, especially when entering the teenage years. Milestones Autism Resources’ professional staff put together some helpful tips to address these challenges:

sibling of someone on the spectrum, especially when additional responsibilities may be placed upon them. It is not uncommon for these teenagers to mature much quicker than their peers or to have less freedom to make typical teen mistakes. Be sure to provide neurotypical siblings with plenty of opportunities to interact with their friends by encouraging them to pursue activities outside the family, and make sure they are getting alone time throughout the week.

Schedule one-on-one time

With bullying disproportionately affecting individuals with autism, families touched by ASD feel the need to protect one another, and that can be an added pressure on any sibling. Madison VanBurkleo, of Rocky River, knows this pressure well, having grown up with a sister on the spectrum.

Although teens typically seek more time away from their parents and family, it is important to deliberately establish and maintain family connections during these crucial years. Brothers and sisters of those on the spectrum may find that their interactions with family are limited so it can be helpful for parents to find ways throughout the week to have one-on-one time with their neurotypical teen, such as establishing a Sunday brunch or a weekly check-in.

Protect their alone time

Teenagers should have the time and the space to build an identity of their own. This independence can be difficult to establish as a

Talk about bullying

“It wasn’t uncommon for me to hear other kids mock and stare at my sister,” Madison recalled. “Initially, this was difficult for me to cope with.” Like many teenagers, Madison cared a great deal about what others thought so she never wanted others to see her sister acting in ways that might draw attention to her autism. “However, observing how people interacted with my sister gave me unique insight into their character,” Madison said. “You can see the morality of others in how they treat people who are different.” Over time, Madison discovered that people who judged her sister were not people to include in her circle of friends. Instead, Madison learned to surround herself with people who are open-minded and patient toward others. Parents can provide support to their neurotypical teenagers by reminding them they are not expected to shoulder this burden alone. By engaging trusted adults as well as caring, courageous peers, they can expand the circle of support for their teen. Looking for more strategies to help your teen succeed? Families can find additional guidance through workbooks, support groups, and one-on-one or family counseling programs. Visit the Milestones Online Resource Center at to find vetted supports in your area.

Madison VanBurkleo and her sister, Kristy VanBurkleo

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Care W


and take advantage of opportunities related to their own growth and enrichment. Blossom Hill’s respite program gives caregivers the opportunity to relax and rejuvenate.” Adds House Manager Anjill Calazzuma, “Caregivers often seek respite care when they face out-of-town career demands, need time off for their own medical procedures, or are planning family vacations.” As Goodlive discovered, as much as a family might want to take their loved one on the trip, vacations can be challenging for developmentally disabled individuals, who may be overwhelmed by the change in routine or over-stimulated by the unfamiliar environment. ADDRESSING UNIQUE NEEDS AND REQUIREMENTS

Before a respite stay begins, DeVerse, Calazzuma, Director of Nursing Bridget Bernhard and CEO Lynne Urbanski spend time with the caregiver or family members to discuss their loved one’s needs. Considerations include the individual’s likes and dislikes, medical or adaptive equipment needs, allergies and other medical conditions, dietary requirements and other specialized needs.


hen it became clear that her daughter wasn’t enjoying family vacations or being away from home, Kim Goodlive looked for a solution. As Holly’s primary caregiver, she had always been hesitant to leave her daughter in the care of anyone outside the family. Blossom Hill Program Director Ron DeVerse says, “Families who devote themselves to caring for a loved one sometimes need time to engage freely in the activities they enjoy, as well as to experience some ‘alone time’

WHY RESPITE CARE? The Centers for Disease Control and Prevention (CDC) advises that staying physically, mentally and emotionally healthy is vital to being a strong caregiver. To achieve this, the CDC suggests that you: • Maintain your personal hobbies, interests and friendships • Take breaks — short (an evening walk, for example) and long (a romantic getaway) • Set reasonable (not superhuman!) expectations for yourself as a caregiver • Delegate some caregiving tasks to reliable friends or relatives Respite care offers you the much-needed time to do these things. When you choose the right care provider, you can rest easy knowing your loved one is being well taken care of while you get the break you need. Here’s how to find your ideal match: Identify your needs. What type of respite services do you need? How often? Keep track of your daily activities and list the areas and times when you need help. Assess your loved one’s needs. Does he or she require assistance with walking, eating or medications? How much social interaction, exercise and mental stimulation does he or she prefer? Research care facilities. Online research and recommendations from doctors, nurses, friends and family can help. Share your list of needs and concerns with them, and then choose a provider based on their capabilities and commitment to loving care.

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Through Akron Rotary Camp programs, parents and caregivers also benefit through respite. Rotary Camp recognizes the stresses of caring for individuals with disabilities and the staff believes that the breaks the programs provide support the family giving parents the opportunity to spend time with other children, attend to tasks, or even just take a break and rest. The camp is operated by the Akron Area YMCA. Through this collaboration both organizations come together to bring the best programming and opportunities for the campers. All of the staff are YMCA employees and has the support from the YMCA’s

human resources department as well as many other back office functions. All camp staff are at least 18 years old. They go through an extensive interview and reference process. All staff are FBI and BCI background checked as well. Prior to each summer season, camp devotes eight days to all staff training. Through this intensive training staff learn about the campers, different types of disabilities and how to make accommodations. Much of the training is focused on behavior management and listening skills as well. Staff are also certified in first aid and CPR. For more information about Akron Rotary Camp and any of its programs please visit or call the camp office to schedule a personal tour at 330-644-4512.


uring the summer, Akron Rotary Camp provides day and overnight camping programs. Throughout the school year there’s Respite Weekends, School’s Out Day Programs, and special events for campers and families to enjoy. Akron Rotary Camp, founded in 1924, provides children and adults with disabilities the opportunity for recreation and respite throughout the year. The mission of Akron Rotary Camp is creating a world where there are only abilities. While at camp, campers enjoy traditional camping activities including crafts, games, waterfront activities, campfires, and much, much more. It is through these activities and programs that campers build selfconfidence, social skills, and independence — tools that will support campers throughout their lives. 2018-19



• 50 percent of parents are concerned about a financial drain to their retirement, in addition to 56% not knowing of a special needs financial professional with the expertise to address these needs




ase of planning comes from having sound decisions made before a crisis or major life-changing event takes place. Properly prepared legal and financial strategies protect an individual that is dependent upon benefits and their quality of life for when parents or caregivers are no longer here. As necessary as special needs planning is, families find themselves in the following statistics.

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• 85 percent of special needs parents have not set up a special needs trust to preserve eligibility for government benefits such as Medicaid and SSI • 84 percent have not written a letter of intent to outline their wishes and agreements for the future care of their special needs child

• 50 percent have not identified a guardian for their child

• 78 percent of parents with a financial plan do not have strategies that include special needs considerations •

61 percent of parents have incurred debt to meet their financial needs

• 72 percent have • Only 14 percent not named a trustee of parents believe to manage their child’s their special needs future finances child will be financially •6 9 percent of independent families say they are • Only 12 percent very concerned with of parents believe being able to provide their child will be lifetime care for their capable of managing dependent with their own finances special needs

Guidance from a committed special needs advisor can help families accomplish longterm goals, as well as immediate emotional benefits. Loose Ends or Legacy LLC helps families who have members with special needs navigate planning throughout important life stages of both caregivers and their loved ones. Founder and financial professional Crystal Cartwright has been providing free special needs planning workshops and consultation for 10 years. She is a mother of five children, the eldest of whom has autism. The focus of the planning is: accessing benefits (SSI/SSDI, Medicaid), maintaining benefits, and preservation of benefits through legacy planning. For information about upcoming workshops and private consultations, visit

Working It

By Angela Gartner Photos by Kim Stahnke


ost people, no matter their ability, want similar outcomes from their employment. They want structure, flexibility, organization, consistency, challenges and opportunities to succeed in their role.

According to a 2017 report by the U.S Bureau of Labor Statistics titled “Persons with a disability: labor force characteristics,” among persons ages 16 to 64, the employment-population ratios rose for both persons with a disability (29.3 percent) and persons without a disability (73.5 percent). The report stated, “However, across all age groups, the employment-population ratios were much lower for persons with a disability than for those with no disability. Also, for people with disabilities, they were more likely to be employed part-time than those with no disability.” The Office of Disability Employment Policy projections for employment growth for people with disabilities is low. According to the report, “The projected job growth rate over the 2012-2022 period for people with disabilities is 10.4 percent compared to 10.8 percent overall, based on applying occupational projections to disability prevalence in the current occupational distribution.” People with disabilities also are underrepresented in 16 of the top 20 fastest-growing occupations, according to the study. “Employment levels of people with disabilities are low, and those who are employed tend to be in low-paying occupations,” it states. However, transitioning into an independent employment and finding the right type of job coaching and training can be difficult for some families. “Whether the potential for in-

Warren Tunstall, 28 Works at City of Solon and Hattie’s Doggie Day Care & Boarding in Twinsburg

creased employment of people with disabilities will be realized depends in part on public and corporate policies regarding access to appropriate education, computer skills, and other training; disability income policies; and the availability of workplace accommodations and other employment supports,” the report says. “Technology and corporate policies are also creating more possibilities for home-based and other flexible work arrangements that can especially benefit people with disabilities who deal with transportation difficulties and medical concerns.” Once people with disabilities are in job positions and are thriving, that’s the easier part. Carrie Linden, 40, Warren Tunstall, 28, and Jared Stearns, 28, each had the support of their families to help them get working. They share their stories of getting the job done.

BE AN ADVOCATE Portia Walker’s son Warren Tunstall, 28, who has autism, has been working for the City of Solon and Hattie’s Doggie Day Care & Boarding in Twinsburg. Warren attended Solon City School District and had vocational training at the Cuyahoga East Vocational Education Consortium (CEVEC). Walker says vocational training such as CEVEC is an important stepping stone as it provides employable skills before kids transition out of the school system. However, she wanted to ensure her son was able to work after he aged out at 22. “(Around ninth grade) I looked around, talked to friends and met a few people with businesses,” Walker says, adding she let them know that he would be ready for employment if they had an opportunity. “The county will find your children jobs, but they might not be the type of jobs that you want for your kids — you might feel they are demeaning or don't pay what he or she needs.” However, she notes that the county and other services do provide job coaches. “The work coach(es) make sure people with special needs know their job,” Walker says. Warren works part-time at Hattie Larlham’s Doggie Day Care & Boarding in Twinsburg, which provides a supportive work environment. “Warren loves animals,” Walker says about the job. “He feels proud of what he does.” His pride in his job also includes the City of Solon Recreation Department, where he works in housekeeping. Through the connections Walker made, Warren was able to work at the city department and be provided a job training coach. “They are there to help you succeed, but you have to do it on your own.” Walker says about finding services. “Do your own research, demand inclusion and get an advocate. Make sure you are getting what you are entitled. You have to go in with the attitude you are going to get what you need for your child.” 2018-19


CREATING AN OPPORTUNITY Trudy Stearns’ son Jared, who has autism, works at Dave’s Markets, his grandfather's and uncle’s family business. He does multiple jobs such as pricing, stocking shelves and working in the produce department. “He works six days a week, not full days, and his hours are different each day,” she says, adding the benefits of him working at Dave’s include the structure and predictability about his job, but also that it provides an opportunity to be flexible. “It’s a good opportunity to teach and practice social awareness, tolerance of others and how to deal with people asking questions,” Stearns says. “There are built-in awards by accomplishing a task from beginning to end.” While she notes she was lucky that Jared could work in the family business, he had some pre-employment job training and coaching. She said it’s important to try to focus on their strengths and place your child where they can succeed. Also, the key is to find a place that will have continued support from the people who work at the organization. “It’s really important for the fellow workers to be educated and they need to understand the best ways to support them,” Stearns says, adding that as employees leave, new workers need to have the same training.

Jared Stearns, 28 Works at Dave’s Markets

Supportive Surroundings Bridget, 35, works with dogs at Hattie’s Doggie Day Care & Boarding in Cleveland.

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Bridget, an employee at Hattie’s Doggie Day Care & Boarding in Cleveland, could be considered a “dog whisperer.” The 35-year-old works at the enterprise, which provides supportive employment opportunities for people with developmental disabilities, and takes care of as many as 40 dogs who come daily or board while their owners are away on vacation. She says she hopes to continue to work with dogs in her next job. “We hire people with intellectual and developmental disabilities who as-

pire to work in the community,” says Mike Sturdivant, regional manager at Hattie’s Doggie Day Care & Boarding, which is operated by Hattie Larlham, a nonprofit organization that serves children and adults with developmental disabilities across Northeast Ohio. The organization has work training services including three Doggie Day Care and Boarding locations: Twinsburg, Cleveland and Akron. Judy Welsh, of Rocky River, has been taking her 3-year-old dog, Pinky, to the center in Cleveland for about a

NETWORK FOR YOUR CHILD Carrie Linden, 40, works at Up Side of Downs parttime, serving as an advocate and doing various administrative duties. She also works at the Cleveland Clinic business offices. These aren’t the only places Carrie has worked; other jobs have included MBNA and Bank of America. “She has no desire not to work,” her mom Sherrie Linden says. “It’s her self-image. She feels like a contributing member of society and (she enjoys being able to) pay for things on her own and to help the family. She believes in the ethic of working and contributes to our household.” Finding a job isn’t always easy and she had trouble finding work for Carrie. Linden says she did a bit of networking everywhere she went and told people what Carrie can do, noting that her strategy was “personal networking and telling everyone (I know) to network, too.” “If you are sitting next to someone, you never know if that person might be able to help you,” Linden says, remembering when she connected with someone like that and was able to help Carrie get hired at MBNA. “I think people are afraid to hire someone with a challenge and there truly needs to be a continuum with greater support,” Linden says. “There can be success. You can get job coaches. Job support is so critical, without it, there is less opportunity.” She advises people looking to hire people with special needs to be very specific about the role as most people who have challenges are gifted in a certain area. “Find the match of that gifted area with the employer,” she says, adding that it is important the person with special needs has someone at the organization they can call for support. “Find a network that supports you and your child,” she adds.

year when she and her husband travel out of town. “They take wonderful care of my dog; she is always happy,” Welsh says. “(The mission of the facility) is amazing. This gives (the employees) so much purpose and they clearly love the animals. This is an incredible resource for Northeast Ohio.” “The benefit of our program is teaching them all the skills they need to be successful in a community job setting,” Sturdivant says, adding that employees learn soft skills, such as

Carrie Linden, 40 Works at Cleveland Clinic and Up Side of Downs

showing up to work on time, adhering to a dress code, following directions, dealing with change and learning how to do the position independently. Kayla Ferroni, facility manager at the Cleveland doggie day care, says some of the workers have not been exposed to what it means to have a job and the center can provide basic employment skills, but it’s also a safe space to make mistakes. For parents who are looking to get their kids in the workforce, Sturdivant says to explore the resources that are

available in the area. “There are so many resources parents might not know about, such as job training programs,” he says. “Explore those and find the right fit for your son or daughter.” “Give them independence and let them make their mistakes — step back a little bit,” Ferroni advises. “We are here to make sure this is a safe environment to support them to do that. This is a softer stepping stone to get them ready to work in the community.” 2018-19



hen you hear the word “dyslexia,” what thoughts come to mind? For some, there is the knowledge that dyslexia is a reading disorder. For others, there might be the belief that a person with dyslexia sees letters backwards. It is sometimes believed that people with dyslexia will never be able to read at all. While some of these beliefs may be somewhat accurate, dyslexia is a complex disorder, with many facets. In simplest terms, dyslexia is an unexpected challenge in connecting the letters on the page to the sounds those letters and combinations of letters make. People with dyslexia have trouble reading fluently and spelling words correctly. The disorder, however, has nothing to do with the level of a person’s intelligence. In that the challenge is unexpected, the person’s general intelligence indicates that he or she should be able to read successfully, were it not for the presence of the disorder.

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DYSLEXIA? By Jason Culp


The earlier dyslexia is diagnosed, the more favorable the outcome for the person with the disorder. Early signs of dyslexia in children include:

1. Delayed language development: the child mispronounces words, does not talk as much as peers or seems to know fewer words than his/her age-mates.

2. Difficulty with naming: including

learning and naming numbers, letters of the alphabet and colors.

3. Difficulty with rhyming: the child

may not recognize the similarities between rhyming words, such as log, dog and hog.

4. Difficulty following multi-step

directions: school personnel may indicate that the child struggles with complex directions, often only hearing or responding to the very early parts of the instruction or direction.


1. Learn about the signs and symptoms of

dyslexia and other learning differences.

2. Consult with your child’s teacher.

Ask if he or she has noticed signs of dyslexia or other learning differences.

3. Ask the school for an evaluation of

the child to determine if a learning difference is present.

4. Advocate for your child so that he

or she can receive and benefit from supportive services that will help them overcome the challenges that dyslexia and other learning differences present.

5. Support your child in their growing

awareness of their academic struggles, and encourage them to talk about their feelings and concerns as they develop.


Children with dyslexia will always carry the diagnosis with them, and reading may be a challenge throughout their lifespan. However, while dyslexia cannot be cured, it can be managed effectively. Students can learn coping and decoding strategies that will assist them in both improving their reading skills and in managing the stress of having a learning difference. Dyslexia is in no way life-limiting. Students with dyslexia successfully complete high school, college and advanced study every day. They work in professional positions, including teachers, doctors, lawyers and accountants. Those with dyslexia can become forceful advocates on behalf of those whose needs are not being met in their schools, communities or workplaces. Many of our most famous celebrities have been open about their struggles with dyslexia. While the disorder presents challenges, it in no way determines the trajectory of a student’s future. For all students with learning differences, the sky is the only limit. Jason Culp is the head of upper school at Lawrence School. For more information, visit 2018-19


Making Homes Accessible for All MAKE WHERE YOU LIVE FIT THE NEEDS OF EVERYONE By Shana O’Malley-Smith


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ast fall, the LakeGeauga Habitat for Humanity helped a Burton family purchase and renovate a home to accommodate their 21-year-old daughter Caeleigh, who has quadriplegic spastic cerebral palsy. The family had been renting the house, but they say it was getting hard to move Caeleigh up and down stairs in the splitlevel home. “Before school, Caeleigh’s mom would pick her up and carry her downstairs, where her younger son would place the wheelchair under Caeleigh and wheel her down to the bus stop, and vice versa at the end of the day,” explains William Meyer, executive director of LakeGeauga Habitat for Humanity. For those caring for adults or children with special needs like Caeleigh, there’s the added need for accessibility and safety. Luckily, home designs have come a long way to accommodate those with disabilities, making it easier to get stylish and functional features that are up to ADA standards. Whether building a home from scratch or remodeling a space for better accommodations, special needs families can still have modern home trends without compromising the accessibility and special features they require. 2018-19


Lake-Geaurga Habitat for Humanity held a home dedication ceremony last fall for a Burtonarea family. The family received the keys to their newly renovated, ADA compliant home. (

MODERN FINISHES Having an accessible home doesn’t mean you have to compromise on style. Mike Pierce, of Hughes Kitchen and Bath in Canton, says they’re seeing a trend in barrier-free showers in both traditional and ADA bathrooms. The feature creates an open look and also allows wheelchairs to roll directly into the shower stall. Manufacturers also are putting out modern-looking grab bars and shower fixtures, giving it a homey look. “They can make a grab bar look like a nice towel bar that matches all of the other fixtures, so it all has a classic look to it,” Pierce adds. “When it’s all said and done, it looks beautiful and it doesn’t look like you just walked into a hospital.” SUBTLE CHANGES Some families who have children with developmental disabilities such as au-

30 2018-19

tism, Down syndrome and other sensory processing issues, are adding sensory corners or rooms to their homes. “They’ll get some of those pop-up tents and add some big pillows, soft blankets or bean bag chairs for the space,” explains Christine Chambers, occupational therapist at Abilities First in Fairview Park. Some in-home areas also include indoor swings, gym mats and sensory bins and activities. “When the kids come home from school, sometimes they need that cozy, tented area or a swing where they can calm down,” Chambers adds. Wandering also is a big concern for many parents who have children with special needs, whether they’re worried about their child going outside unattended or getting into trouble in the middle of the night. “We have a lot of parents who need a fenced-in yard,” Chambers says.

FINDING THE RIGHT HELP Before making any major updates to your home, it’s important to find a contractor who is familiar with the work that you’re requesting. The ADA has detailed standards and compliance guidelines for home construction and remodels, so the contractor should be up-to-date with those building codes and specifications. Additionally, there may be some financial help available to assist in covering the cost of some accessibility projects. “For example, in Cuyahoga County there is NEON (Northeast Ohio Network Council of Governments), which is a funding source that parents can submit for if their child has a disability,” Chambers says. “There is funding out there for modifications you might need to make to your house or to purchase some simple equipment.” Other programs offer scholarships and funding that are based on specific diagnoses. Habitat was able to help the Burton family purchase a home and do extensive renovations to make it ADA compliant for Caeleigh. Some of the features include a new wheelchair ramp to the driveway, a wheelchair lift for the stairs, a new energy-efficient furnace, a new water tank and new windows. They also were able to widen Caeleigh’s bedroom doorway and combined two small bathrooms into one large, handicap-accessible bathroom. “Their life is much better now,” Meyer says. “We’ve talked to them occasionally and they seem to be doing really well.”


“Some parents will put an extra lock on the door that is out of reach for the child and some have installed alarm systems so as soon as a door is opened, they know.”

THANK YOU TO THE 1,200 PLUS PROVIDERS FOR YOUR SUPPORT AND SERVICE TO OUR COMMUNITY. To join the LiveSpecial community contact 2018-19


15 HONORED AS CHAMPIONS AT AWARD CEREMONY By Leslie R. Resnik Photography by Joe Applebaum

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heelchair bound since age 9, clarinetist Jessica Cobb became class president as a sophomore at Normandy High School and plays in the

Alana Ruth Gohn

marching band. Mary Verdi-Fletcher, born with spina bifida, became a wheelchair user at a young age. Through her iconic performing arts organization, Dancing Wheels, she has integrated both non-disabled and disabled dancers in her mission and created materials to help them succeed. Despite the challenges faced after multiple surgeries for severe burns, causing amputation of hands and feet, Christina Aitken completed her community college education, has run marathons, rides horseback, skis, quilts and devotes much of her time to volunteer and support others. Kendall and Kylie Weinmann befriended classmate Alana Ruth Gohn, born with microcephaly that prevented speech. They’ve become her best school friends, visiting at home weekly, scheduling vacations around Alana’s abilities and inspiring inclusion among classmates and teachers by not seeing differences. Kaela Jackson, who sees the world through “swiss cheese,” became a third-degree black belt in Tae Kwon Do and co-manages the women’s basketball team at Mount Union College. She became her own advocate in high school to acquire accommodation for her special needs. These remarkably resourceful people each were honored in their age categories as Gold Medal Champions by the National Council of Jewish Women/ Cleveland at a fundraising gala celebrating those who are living well with a disability or who have been instrumental in advocating for the success of another with special needs. A committee reviewed nominations and selected the gold medalist winners, plus five silver and five bronze Champions. One hundred and twenty-five people came to congratulate these champions and raise money to support the website and outreach efforts last November at Executive Caterers at Landerhaven in Mayfield. celebrated its fifth anniversary as the only free and comprehensive Northeast Ohio online resource to support individuals with special needs and their families. It boasts more than 1,200 providers in Northeast Ohio including medical, social and rehabilitative services and access information needed to support any aged person with special needs. National Council of Jewish Women, in conjunction with Alana’s parents Elaine Eisner and Scott Gohn, created the site. Eight-year-old Alana Gohn and David Rabinsky, 59, the legally blind director of beverage and catering for The Ritz-Carlton, Cleveland hotel, were honorary chairs. Rabinsky was diagnosed with retinitis pigmentosa at age 38, a disease that steals peripheral vision and can lead to total blindness. Each Gold Medalist Champion received a personalized award and $500 toward an approved program, service or adaptive device. As a bonus, Jessica Cobb, a dancer prior to her physical limitation, got to meet her hero, Mary VerdiFletcher, wheelchair to wheelchair. Jessica plans to use her gift for classes with Dancing Wheels. See more about the Champions at Kendall, Carter and Kylie Weinmann 2018-19




Taking the


rips to the dentist can spark anxiety in just about anyone, but to special needs patients, they can be particularly challenging. Fortunately, a little preparation by parents and caregivers can do much to make dental visits more bearable for their loved ones with special needs.

Patients with special needs can be children or adults with a chronic, physical, developmental, behavioral or emotional condition that limits one or more major life activities. Some of the more common conditions that require special care in dentistry include Down syndrome, cerebral palsy, epilepsy or seizure disorders, vision and hearing impairments, cleft lip/ palate, and learning and developmental disabilities. Beth Weinstein, executive director of the Chicago-based Special Care Dentistry

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Association (SCDA), says that special care dentistry is a relatively new field. The SCDA is comprised of oral health care professionals dedicated to serving patients with special needs through education and networking. Weinstein says that many of the group’s members undergo specific training programs while in medical school to meet the unique needs not only of special needs patients, but geriatric and hospitalized ones, as well. The association provides a “Special Care Dentist Referral” portal on its


By Kerry Prater

website — — to help people find dental professionals in their area. The group currently lists 17 SCDA members in Ohio among its ranks. “We would like to have more,” Weinstein continues, “There are parts of the country where we don’t have special needs dentists represented.” She notes that there are similarities between the care of special needs patients and children. These similarities may explain why, according to the American Academy of Pediatric Dentistry (AAPD), a pediatric dentist often is the dental professional of choice for special needs children and, occasionally, adults. Pediatric dentists are trained specialists with two years beyond dental school with a focus on caring for chil-

dren, including those with special needs. The AAPD states that 99.5 percent of its members provide care for patients with special needs. The Celeste Myers Dental Clinic at Akron Children’s Hospital sees patients up to the age of 15, although patients with special needs who are older and in need of dental work are assessed on a case-by-case basis. Should there be a need for adult oral care beyond the scope of a pediatric dentist, then the staff will work with family members and caregivers to transition the patient to an adult dentist. “Our staff — which includes two full-time and one part-time pediatric dentists, dental assistants and dental hygienists — has the training and experience to care for children with special needs, whether it is autism, cerebral palsy or another chronic condition,” says Dr. Rajesh Vij, DDS, medical director of the clinic. Unlike many of the health challenges faced by special needs patients, dental disease is largely preventable. A potential risk to patients is that their parents

or caregivers may understandably overlook dental care as they cope with dayto-day challenges stemming from their loved ones’ conditions, according to Dr. Adam Pollock, DDS. This could be problematic as some patients are more susceptible to decay, gum disease and oral trauma due to a lack of physical ability, diet, unsteady homecare routines, and biological factors. Pollock says the best way to ensure consistent dental care is to build it into an everyday routine as soon as possible. PUTTING PATIENTS AT EASE Parents and caregivers can ease patients’ anxiety about dental visits even before leaving home. Pollock suggests showing patients pictures of a dental office and its staff to acquaint them with unfamiliar faces before their first visit. At his Cuyahoga Falls-based practice, Pollock refrains from scheduling treatments or procedures for a patient’s first visit and instead prefers evaluations or cleanings as opportunities for “get-ac-

quainted” meetings. These visits allow him and his staff to learn about newcomers and foster a good rapport. Putting patients at ease shouldn’t cease after an initial visit. Pediatric dentists are trained to recognize that each patient is unique and may need extra care to feel comfortable during treatment. For example, the Celeste Myers Dental Clinic has a special area of its waiting room for children with sensory sensitivity, with less intense lighting, soft seating, soothing colors and relaxing music. The clinic staff also has access to a language interpreter service for families who are non-English speaking. “Children with special health care needs do well with that extra level of care and that special training and experience on behalf of the staff,” Vij continues, “They know what to say and do to calm children, whether it is music, the mention of a reward from the treasure box or even, for the most anxious patients, a visit from a four-legged friend from Akron Children’s Doggie Brigade.”

Other Considerations Among the advantages of a hospital-based clinic such as Akron Children’s Hospital’s is that dentists have access to nearby operating rooms (ORs) and easy access to patients’ medical records. “Depending on the child and the situation, it may be easier to do the work in the OR with the assistance of a pediatric anesthesiologist — rather than doing the work over several clinic visits,” Vij continues, “If several teeth need to be removed or extensive restorative dentistry is needed, this may be the best approach for the child and family.” Weinstein notes that there also is a variety of dental equipment available to serve special needs patients, such as chairs designed to accommodate those with cerebral palsy and spinal disorders. She adds that some of the equipment used by SCDA

members is portable and can be brought to patients’ residences. As helpful as specialized equipment and state-of-theart operating facilities are, there is one basic tool that Pollock and other dental professionals frequently use: communication. While each patient is unique, Pollock relies on an age-appropriate “tell-show-do” method to explain dental procedures to special needs patients. He also discusses treatments with parents exclusive of children so that they can align their expectations and strategies about how to approach a child’s situation. Over the years, Pollock has observed that dental jitters aren’t necessarily confined to patients. He urges adults to remain calm as kids feed off of their parents’ behavior. If a parent or caregiver is relaxed, then the patient will likely be relaxed, too. 2018-19


Making Connections Northeast Ohio families are inspiring others by helping to provide support to the special needs community. by Lindsey Geiss

PICTURE BOOK SHOWCASES ABILITIES OF CHILDREN AND ADULTS WITH DOWN SYNDROME Emmy Award-winning journalists Denise and Tony Zarrella cover newsmakers across Northeast Ohio and beyond as a Channel 19 News reporter and sports director, respectively, but their greatest story is still being written. It is one of acceptance, love and dedication to the special needs community, which started nine years ago with the birth of their daughter Gianna, who has Down syndrome, followed by their son Anthony 13 months later. The Zarrellas learned of Gianna’s diagnosis before birth. Screenings also revealed two holes in her heart that required surgery at age 3 months. “We did the testing to know and be prepared,” Denise recalls. “It gave us time to prepare for what was to come and to work through a lot of different emotions, mostly fear of what was ahead. Once we did, Tony said, ‘She’s coming to the right house, a house filled with love.’” Denise turned to local resources and other parents, including support groups, which she found empowering. “I wanted to do cartwheels around the house

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after the meetings,” she says. “You can feel very isolated, but don’t be afraid to connect. When a door is presented, open it.” The family has received support from local organizations Connecting for Kids, Help Me Grow, and especially the Up Side of Downs, in which the Zarrellas remain active. The Up Side of Downs was an important part of her family’s early days. “I needed someone to talk to and guide me through fears, worries and other feelings,” Denise says. “The support was tremendous.” A gift basket from the organization turned out to be the gift that kept on giving. It contained a picture book with a photo of a smiling child with Down syndrome for each letter of the alphabet and became one of her children’s favorites. Inspired by Gianna and Anthony, the well-worn book and all the parents she met throughout her journey, Denise wrote her own children’s book. With

encouragement from Tony along the way, she self-published “Not Even the Sky is the Limit” in 2013. The picture book showcases the abilities of children and adults with Down syndrome, from art to skydiving. The Zarrellas continue to give back to the organization and community that has given them so much. They raised money for the Up Side of Downs through sales of her book, and the family will take part in the 17th Annual Buddy Walk at Cleveland Metroparks Zoo. The one-mile friendly walk celebrates and supports individuals with Down syndrome. Denise feels her role as a reporter now has deeper meaning. “I am eternally grateful for the opportunity to share stories about children with special needs to empower other parents – stories that are close to my heart,” she says. “This is something I was meant to do.” For more information, including book availability and annual Buddy Walk registration, visit



HELPING TO CREATE SENSORY INCLUSIVE SPACES Inspired by their son with autism, Amy and Jeff Belles have become leaders in the nationwide inclusion movement, earning them a Parent Tribute Award at the 2018 Milestones National Autism Conference. As co-directors of KultureCity Ohio, the pair has helped the Alabama-based nonprofit gain national attention for rethinking accessibility for people with sensory processing issues, including those with autism spectrum disorder (ASD), PTSD and dementia. As a behavioral therapist and adapted physical education teacher with Copley-Fairlawn City Schools, Amy Belles sees the potential in her son and others with autism. “What I’ve learned from Carson and all the kiddos I’ve worked with is if you give them the ways and means to show their potential, the sky is the limit. They are so capable,” Amy says. For her nonverbal son, that meant finding a way for him to communicate. “His iPad Touch and harness are amazing self-advocacy and allow him to produce sentences and communicate through text and sign language,” says Amy. “So many families feel isolated and worry about being judged. Compassion and accommodations make a world of difference,” Amy adds. This drives her to train facilities in sensory inclusion. The Rock & Roll Hall of Fame and Akron RubberDucks will soon earn KultureCity’s certification, joining the likes of Quicken Loans Arena and the Akron Zoo, among others. Amy notes, “‘Sensory inclusive’ means you are welcome any day, anytime,” since all staff are trained and receive an annual refresher. Certified facilities offer designated sensory spaces where people can take a break from noise and crowds, sensory bags (with noise-canceling headphones, lap pads, sensory toys, etc.) for check-out, and social stories online to review before visiting. To find sensory inclusive places near you, KultureCity offers a $0.99 app for mobile devices. Like “Yelp for sensory needs,” it connects users with photos, reviews and each other through a chat feature to foster community and support. When Amy isn’t conducting trainings or spending time with family, she runs marathons for KCFit. The thousands of dollars her team raises come home to Northeast Ohio. She also informs autism families about wandering prevention through distribution of KultureCity lifeBOKS kits, which are available for free to families who apply through the website and include $100 worth of prevention tools. To donate to KultureCity, join the KCFit team or apply to receive a lifeBOKS kit, visit The KultureCity app is available on the iTunes App Store and Google Play.

Thomas (10) and George (3) Shepherd enjoy cheering on the Cleveland Indians, playing outside with neighborhood friends and vacationing at Disney World. They don’t let their physical challenges stop them from doing what they love. When Thomas wasn’t meeting milestones at age 6 months, Laura and Matt Shepherd looked for answers. A diagnosis of spinal muscular atrophy (SMA) came after his first birthday. Later, George received the same diagnosis. A genetic neuromuscular disease, SMA causes both boys to grow progressively weaker over time. Unable to stand, walk, or get into a sitting position on their own, both use wheelchairs to move around. The boys require regular care at home and from medical providers, including physical and occupational therapy, treatments to increase lung strength, feeding tubes for nutrition and BiPap machines to help them breathe at night. They also receive injections of the only approved treatment for SMA into their spinal columns every four months. Originally from Alabama, the Shepherds relocated to Northeast Ohio to take advantage of the high quality medical care and public schools in the area, and to be closer to Matt’s family in Tiffin. They try to do as much as they can as a family and recently ventured outside their comfort zone to a new vacation destination. Disney is familiar and accommodating, but Thomas’ wish was to fish and swim at a lake house, so they made it happen. The family also takes extra precautions to keep the boys healthy since common colds have sent them to the PICU, but Laura’s positive attitude remains infectious, inspiring other families still adjusting to new diagnoses. “You have to change your mindset to ‘they can do everything anybody else can, just in a different way.’” The Shepherds share their story to raise awareness of the

challenges faced by families dealing with diseases such as SMA. “Telling others about how we deal with our family’s challenges helps others know they are not alone in their struggle,” Laura says. The family is active in Cure SMA, a national support, research and advocacy group. After participating in the Ohio/ Kentucky/Indiana chapter Walk-n-Roll fundraising event in Cincinnati for several years, they helped organize the first Walk-n-Roll in Northeast Ohio, which raised over $20,000. They also coordinate local dine-to-donate fundraisers throughout the year.

“While donating time and money to funding research and providing assistance to special needs is critically important, the little things can make a big difference,” Laura says. “Holding a door for someone who needs extra assistance, not blocking a ramp that helps someone in a wheelchair get over a curb, being aware that the person using a wheelchair needs a little extra space or making sure handicapped parking spaces and seats at events are reserved for those who truly need them — this kind of awareness helps on a daily basis and is also valuable.” One in 50 people are carriers for SMA, and progress is being made toward implementing a newborn screening nationwide. To support CureSMA or learn more, visit 2018-19



As an intervention specialist and mother of six, includable of individuals in mind with a focus on privacy, safety, EASES THE ing two adults with Down syndrome (Jeremy, 33, and ease of use and personalization of service. A transportation BURDEN OF plan is developed to meet each user’s needs, and passenErin, 31), Deborah Picker understands the time commitment needed to ensure individuals with challenges gers are matched with drivers based on a thorough vetting FAMILIES remain engaged and active at every stage of life. and interview process. It was in these roles, and as medical outreach coDrivers undergo background checks, training ordinator for the Up Side of Downs, that Deborah and sign confidentiality agreements. Registration discovered transportation was a barrier for many to is done in advance, payment is electronic (through participate in the community, so she created FareVenmo) and a magnetic symbol is placed on the veCle, an “Uber for special needs.” hicle for identification. Before meeting, passengers Founded in 2017, the nonprofit transportation and drivers see photos of one another and the user’s service provides individuals ages 14 and older diagpreferences are documented (including music, connosed with an intellectual or developmental disabilversation, car seating and any stimuli to avoid) to ity (such as Down syndrome, autism or early stage help ensure the most enjoyable ride. Alzheimer’s) the opportunity to find a trained and Fare-Cle accepts the SELF waiver but is not a vetted driver to community activities, social engageMedicaid service provider and cannot accept Level 1 ments or work to supplement non-medical transportation (NMT). or I/O waivers. The service currently has 10 drivers and does not offer “As children enter their teens and adulthood, aging parents may consistent daily rides to employment. Parents or guardians agree to not be as able to drive them places, or the individuals don’t want terms and conditions and pay an annual access fee. After enrollment, their parents taking them,” Deborah says. “More people with distransportation arrangements are made between driver and family. abilities are working in the community, but they often do so at odd “It’s easy to get caught up with a label and wonder ‘Am I doing hours beyond the typical NMT schedule.” Fare-Cle eases the burden enough?'" Picker says. “I realized that despite how I tried to change of families while promoting independence, community integration my son, that is who he is, and he is happy. It’s not about fixing anyand self-empowerment. thing. It’s about working from strengths to make the individual as When developing the program, Deborah considered her own independent and happy as possible.” children, especially her adopted daughter Erin who has Down synTo learn more about Fare-Cle or enroll for transportation services, drome, autism and limited verbal skills. She kept the most vulnervisit


Business owner and mother of four Lisa Zingales has a blended family that includes her husband John, his daughters Simone (16) and Alexa (12), and Lisa’s daughters, Madison (18) and Morgan (16) Dishler. Morgan is an active teenager who has epilepsy. She plays on the Chagrin Falls tennis team, has a job and gets good grades. Morgan was diagnosed at age 6 after having difficulty at school. “In meet-

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ings, her teacher would ask me why she does an extended flutter with her eyes,” says Lisa. Months passed without improvement, so they visited the pediatrician and Rainbow Babies & Children’s for an EEG, which was abnormal. After a three-day inpatient stay for sleep monitoring, epilepsy was confirmed. What followed were years of trying different medications, negative side effects including weight loss and fatigue, numerous 504 Plan and IEP meetings, and hiring an education attorney to defend Morgan’s right to accommodations in the school district where they lived at the time. Lisa and Morgan sought help from support groups to learn from other families’ experiences. According to Lisa, the teenage years present unique challenges for parents of children with epilepsy. Lisa emphasizes responsibility and consequences for actions. “You have to be consistent and firm,” Lisa says. “Sit down with your teen to talk about driving and drinking with epilepsy.” These experiences inspired Lisa to become a founding board member of Empowering Epilepsy. Founded in 2014 by Leigh Goldie, the organization offers a caring community that em-

powers people with epilepsy and their families to proactively manage seizures and take charge of their lives. For Lisa and Morgan, it is a place where they no longer feel alone in their struggles and will be able to overcome them with others who share their experiences. The whole Zingales family is involved in the organization. Lisa is vice president of the board of directors, John manages the annual golf outing, and all four children volunteer at events like the annual Purple Day Party. Other activities offered include restorative yoga and art therapy. While learning challenges and medication side effects are part of daily life, they have become more manageable with a team of doctors, school professionals, family and friends. “Finding the right medications and school were key,” Lisa says. “Life became simpler.” She cites the change to Lawrence School as the best move of her life thanks to smaller class sizes and schedule accommodations for completing schoolwork. Morgan no longer works with tutors and is thriving. For more information, visit



By Tricia L. Kuivinen, LSW, MA, external affairs director, Linking Employment, Abilities and Potential (LEAP) Because she enjoyed having new adventures, learning to ride a motorcycle had been on Megan Hammond’s bucket list for years. While she had ridden a few motorbikes in her teens, she hadn’t yet piloted a real motorcycle. Her chance finally came in 2007, when her fiancé offered her his ’89 Honda Savage and a few basic driving instructions while they were visiting his family’s property in Holmes County. Little did Megan know, that much sought-after ride would change her life. “I ended up at the bottom of a ravine with my spinal cord totally severed,” Megan says. “The bike was way too big for me, and I lost control of it while trying to ride. I spent 32 days in the ICU at Akron General Hospital, and I had no function or feeling below my waist. I had experienced a t-4 spinal cord injury resulting in paraplegia, or the inability to utilize my lower limbs. I also had a collapsed lung and suffered pneumonia in addition to my spine injury. The doctors told me I ‘shouldn’t still be here’ based on the severity of my accident. But for some reason I survived, and I am very grateful to be alive.” Remarkably, Megan made a fast-paced and substantial recovery, thanks in part to her abundant “can-do” attitude. “After leaving Akron General, I entered extensive rehabilitation at Metrohealth Medical Center in Cleveland, attending therapy sessions five days per week, three times per day,” she says. “The therapists there were great and made me try everything on my own. They taught me to ask for help only if I truly needed it, and to focus on what I could do, not what I couldn’t do. I was engaged at the time, and my initial goal was to walk down the aisle for my wedding. When I realized that was not going to be possible, I tried to keep my focus on what I could do, like returning to work, and living independently in my own home. I had always been stubborn and that trait really came in handy during my recovery.” Because Megan had worked as a teacher for the Wooster City School District prior to her accident, she knew that teaching could be an accommodating career. Beyond learning to re-navigate her classroom and teaching duties while using a wheelchair, she also had to adapt to new realities in daily living and self-care. Family members helped with making her residence more accessible, while she created new personal routines, strategies and methods for living as independently as possible. “After I figured out my new normal, I was able to function at home and in the community without any outside assistance,” Megan says. “I’m able to shower, drive, work, shop, cook, and can do everything else necessary to live independently. I love being on my own and setting up my own approach to daily life.” She eventually left teaching to pursue a new role at Metrohealth Medical Center, working as a research assistant on a National Spinal Cord Injury Model Systems Grant. Megan also keeps busy by participating in numerous hobbies, including adaptive paddling (kayak) and hand-cycling, activities that help her to reach new goals. “My motivation really comes from within; I’m always in a personal competition with myself, to see if I can be better than I was the day before,” she adds, with a big grin. Megan serves as a board member of Linking Employment, Abilities and Potential (LEAP) and publishes a blog called “Wheellife” about living with a spinal cord injury. Learn more at, or @wheellifeblog.

LOOK BEYOND Seventeen-year-old Hannah Shuffer, a senior at Orange High School, and her sibling, Nathan, have a close relationship. Like most brothers and sisters, they have similar likes — for example, both enjoy music. Nathan, 22, who has cerebral palsy and is non-verbal, is sassy and knows how to cheer up the family, according Hannah. “He is very loving and caring,” she says. However, when she was in fifth grade, she started to realize people would treat her sibling differently and it hurt her. “People would stop and stare, or not smile,” she says, adding the normal etiquette was ignored when he was around. “They treated him like he was an alien.” Hannah wants other people to realize that her brother is like everyone else and to look beyond his special needs. “To treat people like people,” she says. “We all want to be loved, appreciated and respected.” Hannah and her friends decided to start the #lookbeyond campaign to make people aware that those with disabilities are like everyone else. They put together an awareness week at her school. She is hoping the campaign expands beyond her high school and she wants to introduce it to the elementary and middle schools — and some other schools not in her district. Hannah wrote an essay detailing the project and her message against disability discrimination for the 2018 “Stop the Hate Youth Speak Out” essay writing contest from the Maltz Museum of Jewish Heritage in Beachwood. She was named grand prize scholarship winner for her effort. Her brother and the special needs community also is one of the reasons she got involved with the Project Support club at her high school. The club provides opportunities for students with special needs to interact with their typical peers. Project Support members plan social events, service activities, fundraising projects and promote awareness for the special needs community. Hannah is passionate about helping people with disabilities get the services and funding they need that are not readily available to them. “We hope to get more members for Project Support this year,” she says. “It takes some dedication.” Hannah hopes to create a culture where people learn and understand those with special needs. “You don’t have to go out of your way (when interacting or passing by someone with special needs),” she says. “Just a polite smile, which is what you do with anyone else. Don’t cast them aside or ignore them.” — Angela Gartner 2018-19


SPIKE Silicone Fidget Play Gripper Toppers and Fij-It SPIKE silicone fidget play offers pencil Grippers, Toppers and Fij-it discs that help kids of all ages stay focused at school, home and work. These 100 percent silicone fidget toys are quiet, mess-free and can be sanitized for unlimited play. The durable soft spikes are calming, therapeutic and provide tactile stimulation that can be beneficial for those with focusing disorders. They offer a substitution for other sensory toys that can be distracting and/or cause damage to clothes, etc. $3.99-$9.99 Ages 6 and older

Looking for some products for your children with special needs? Here are some books, fun toys and other items to help the whole family.


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EXCELLING WITH AUTISM Obtaining Critical Mass Using Deliberate Practice Excelling with Autism introduces a new way to optimize the progress of learners with ASD. Reaching critical mass helps learners apply information in new ways — spontaneous generalization. This book is about doing things differently to positively impact individuals on the spectrum by supporting the development of critical mass in areas that are necessary for successful functioning at home, work, and in the community using the researchbased elements of deliberate practice. $22.95 For parents and educators

COME TO LIFE! Your Guide to Self-Discovery Helping Youth with Autism and Learning Differences Shape Their Futures This is a unique book that helps parents and tweens/teens engage in an active process of self-discovery to improve the transition to adult life. Author Tom Iland, a young man with autism, speaks directly to his peers and guides them through the process of discovering themselves. Tom’s mother Emily, a special educator, adds insights, fun activities and additional resources. Chapters include: Know Yourself, Love Yourself, Be Yourself, Find Yourself, and Find Your Voice. $44.95 For Tweens & Teens, Parents, Families


PARENTING ADHD NOW! Easy Intervention Strategies to Empower Kids with ADHD

STAND BY ME Empowering Bystanders to End Bullying in School

Diane and Elaine combine their practical know-how and professional expertise to offer immediate, actionable strategies you can use to guide your ADHD child effectively. The material presented is grounded in three main concepts: Apply the Coach-Approach to Parenting; Use Real, Practical Strategies; and Focus on the Parent, which is about shifting your focus inward and empowering yourself so that you can empower your child as they navigate life with ADHD.

This unique anti-bullying program teaches student bystanders what to do when they see bullying happen. Designed and piloted in public schools, it provides simple training, ease of use, data for decision-making, and demonstrated effectiveness. Once trained, faculty sponsors provide ongoing training on participating campuses, so the program is easy to maintain despite personnel changes.

$9.99 For parents of complex kids

$22.95 For parents and educators

TALK WITH ME A Step-ByStep Conversation Framework for Teaching Conversational Balance and Fluency Talk With Me is a unique approach to assessing and teaching conversation skills in a group setting — effective for most students who have difficulty engaging in conversations, including students with HF-ASD. The Conversation Framework breaks down the elements of a conversation that must be mastered. The framework was developed and refined across many years based on a review of the relevant research along with close observation of what conversations really sound like. $25.95 For parents and educators

Memory Ties are training shoelaces made with a special core to allow for easier tying. The unique core has architectural properties similar to pipe cleaners, which prevent them from flopping over and help them remain where they are positioned. They are a great tool for children struggling with shoelace tying due to fine motor challenges, low muscle tone, and/or dyspraxia. $5.99 for solid colors, $7.99 for bicolor laces Ages 4-9 Elena Epstein is a mom of two and the director of NAPPA Awards, the longest running and most respected awards program in the industry, celebrating the best in family products for 28 years. For more product reviews, visit 2018-19





here are many factors that make a special needs trust “special” and different from other trusts. If the trust is properly drafted and contains the provisions required by state and federal law and regulations, the funds held in the trust will not be considered assets available to the individual (beneficiary) who is permanently disabled and receives or is applying for Supplemental Security Income (SSI) or Medicaid. Payments or distributions from the trust made directly to the providers of goods and services for items other than food and shelter expenses are not considered as income to the beneficiary under the means-tested programs such as SSI and Medicaid. Thus, funds held by the trust may be used for the “special needs” of the beneficiary for items that are not available through other sources and may improve the beneficiary’s quality of life. Special needs trusts also are called Medicaid payback trusts, because at the

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beneficiary’s death, the state will have a claim for reimbursement of services which were paid by Medicaid. Some may think this is unfair, but the tradeoff is that the beneficiary may be able to qualify for Medicaid and have the benefit of his or her own funds. Having a source of funds for items such as clothing, toiletries, entertainment and a vacation is particularly important for beneficiaries who do not have family members who could or would pay for such items. A special needs trust may only be established for the benefit of an individual who is permanently disabled, and funds may only be deposited until the beneficiary turns age 65, although the funds remain available after age 65. Until quite recently, this trust could

only be established by a parent, grandparent, legal guardian, or ordered by the court. However, a federal law, the Special Needs Trust Fairness Act of 2016, has now made it possible for a permanently disabled individual age 65 and younger to establish a trust for his/ her own benefit. This change promotes the independence of individuals with disabilities who have the capacity to establish a trust. Sandra J. Buzney is an attorney serving Cuyahoga and surrounding counties. Sandra brings the skills and knowledge from her former career as a medical social worker to her law practice. Sandra concentrates her practice on working with individuals and families to develop estate plans, including families with special needs children and adults. Visit for more information. 2018-19



Opening the Door to BENEFITS LEAP provides people with disabilities help to access employment and public service programs through new self-pay option


he disability-services work of Linking Employment, Abilities and Potential (LEAP) began back in 1981 and is designed to help people with a wide range of disabilities live successfully in the Northeast Ohio community, achieving the highest possible levels of personal independence and autonomy. In 1986, LEAP began offering employment services. Through newly developed self-pay options, the Certified Benefits Specialists at LEAP can provide both employment and access to public benefits services for a fee. The range of paid services includes filing applications

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for Social Security, food stamps/SNAP and Medicaid; appeals of Social Security denials, if warranted; and formal benefits analysis, a process whereby individuals can understand the impact of full- or part-time employment on their eligibility for various public benefits programs. This can be vital information for individuals with disabilities to secure and consider prior to accepting any job offers. LEAP collaborates with the Cuyahoga County Board of Developmental Disabilities, Opportunities for Ohioans with Disabilities, and many other state and county programs to screen, develop and refer job candidates to job openings with Northeast Ohio employers. In addition to working closely with state and local agencies, LEAP recognizes that some people with disabilities who need professional employment assistance sometimes desire to work outside of established state and local referral systems. In addition to help accessing public benefit programs, LEAP’s newly created menu of self-pay employment services includes career exploration, job readiness skills, resume development, mock inter-

views, employment referrals and on-thejob coaching for new hires. LEAP has found that an individualized and comprehensive approach to meeting each job applicant’s unique needs results in greater levels of both retention and job satisfaction on the part of both employers and people with disabilities. While there may be some exclusions based on both federal and state law and regulations, LEAP can permit most consumers who are interested to pay directly for employment and benefits services themselves, thereby expediting their results. A Fee for Service Screening and a Service Agreement are required prior to the commencement of LEAP services, to ensure that eligibility criteria can be verified and that there is a thorough understanding of all aspects of the arrangement by all the parties involved. If you or someone you know may be interested in pursuing LEAP’s employment or access to benefits services through these fee-based options, please contact LEAP at 216-696-2716 or Learn more by visiting LEAP online: Facebook, Twitter, LinkedIn, YouTube and



LEGALITIES of Housing Accessibility

he Federal Fair Housing Amendments Act of 1988 and Ohio Code Section 4112 specify the laws that landlords must follow with regard to persons with disabilities or handicaps. These laws cover persons with a disability, which is a physical or mental impairment that substantially limits a major life activity that is permanent or long-term. A person with disabilities is allowed to ask a landlord for accommodations or modifications so that he or she has an equal opportunity to use the home. There must be a relationship between the accommodation or modification and the disability such that without the change, the disabled individual would not be able to reasonably live there anymore. A statement from a medical professional like a doctor or psychiatrist is usually necessary to make the case. There is a broad range of accommodations that people can request. For example, a request for a first floor apartment would be reasonable for a person with a

By Laurie G. Steiner

mobility issue. Or, a reasonable, supported request for a service animal should be allowed. Such requests must not cost the disabled person any extra money, like a special extra security deposit for an assistance animal. However, the tenant is still liable for any damages that occur. Modifications are structural changes to the home or apartment to allow the disabled person full use and enjoyment of the home. Examples include a wheelchair ramp or widened doors, or grab bars in the bathroom. As long as they are proven and reasonable, the landlord must allow them. The tenant is normally the one who is responsible for paying for the modification. However, if the housing is federally funded, the owner has to pay for the changes. Not every request for an accommodation or modification has to be granted. The landlord can argue that the tenant is not actually disabled or that the change is not really necessary. This is where the statement from the medical professional can help prove the case. A landlord also may argue that the request is not reasonable. For example, if the

financial or administrative cost is too high, it might not be reasonable. Additionally, a request that changes the housing in a fundamental way or causes substantial damages to the property is not reasonable. Finally, a landlord may object if there is a less expensive way that could be substituted to accomplish the change, unless there is good cause shown to disallow it. If you think you have been discriminated against, you should file a charge of discrimination in housing on the basis of disability with the Ohio Civil Rights Commission (OCRC). In Cleveland, the number is 216-787-3150 and in Akron, 330-643-3100. You also can file a complaint with the U.S. Department of Housing and Urban Development (HUD) by calling 800-765-9372. Don’t let a housing provider discriminate against a family member with disabilities. Understand and stand up for your rights to appropriate, useable and enjoyable living arrangements. Laurie G. Steiner, Esq., CELA, Solomon, Steiner & Peck, Ltd. 6105 Parkland Blvd., Suite 140, Mayfield Heights, Ohio 44124. 216-765-0123,, lsteiner@ 2018-19


 CHANGING THE CONVERSATION ABOUT EPILEPSY AND SEIZURES By Leigh Goldie, founder and executive director of Empowering Epilepsy



pilepsy and seizures have been hiding in the shadows since early times. People living with seizures have been told by others for centuries what they can’t do because a seizure can happen at any time or place without any warning. Seizures are often overlooked, misdiagnosed or ignored. But why aren’t we proactively helping people live well with epilepsy? This is why we need your help to change the conversation about epilepsy.

What is the difference between epilepsy and seizures? Here is the official definition of epilepsy and seizures from the International League Against Epilepsy: “Seizures and epilepsy are not the same. An epileptic seizure is a transient occurrence of signs and/ or symptoms due to abnormal excessive or synchronous neuronal activity in the brain. Epilepsy is a disease characterized by an enduring predisposition to generate epileptic seizures and by the neurobiological, cognitive, psychological, and social consequences of this condition. Translation: a seizure is an event and epilepsy is the disease involving recurrent unprovoked seizures.” When a person has had two or more seizures that occur more than 24 hours apart, they can be diagnosed with epilepsy, or a seizure disorder, which is the same thing. Seizures can last from a few seconds to a few minutes, and may cause the person to stare into space, fumble with their clothes, have muscle jerks, or fall on the floor and shake. What the person does during the seizure is usually determined by the part of the brain where the seizure is occurring. This is why there is a spectrum of more than 40 different types of seizures and syndromes, of which the general public often is unaware. Symptoms can be so subtle that the seizures may not be recognized for months or years after they have begun.

After the seizure, the person may feel tired, disoriented, confused, nauseous, or have a headache or a migraine as their brain recovers. This is called the Postictal Stage of the seizure. Others may be fine and unaware that they have just had a seizure. Epilepsy is an extremely misunderstood disease, and Empowering Epilepsy’s mission is to change that. In addition to the seizures, people with epilepsy are living with depression and anxiety since seizures most often are unexpected and can happen at any time and any place. Empowering Epilepsy wants to help people live well with epilepsy. We provide programs, services, events, resources and support to help people with epilepsy realize they are not alone. There are many other people in Northeast Ohio who understand what they are going through, and if they join us to investigate ways to lessen seizures, they will find positive ways to empower their lives. Empowering Epilepsy, a nonprofit 501(c)3 public charity organization, was started in 2014 by people directly affected by epilepsy and seizures in Northeast Ohio. This group organized to encourage the general public to start talking about epilepsy and seizures, and to proactively help people find ways to lessen or eliminate seizures, since there is currently no cure for epilepsy.


1. Epilepsy is rare. I don’t know anyone who has it. Actually, 1 in 10 people experience a seizure in their lifetime, while 1 in 26 will develop epilepsy. More Americans live with epilepsy and seizures than the number of people living with autism spectrum disorders, cerebral palsy, multiple sclerosis and Parkinson’s disease combined. In August 2017, the CDC reported that at least 3.4 million people in the U.S. live with seizures, including 470,000 children. Many people with epilepsy remain undiagnosed because they are unaware that their symptoms are seizures. 2. Epilepsy medications stop seizures. While medications can be lifesaving to about 50 percent of people with epilepsy because they do stop the seizures, for others, the medications only lessen seizures (30 percent), or don’t stop seizures at all (20 percent). Since the goal of anti-epileptic drugs (AEDs) is to slow down the central nervous system, these medications tend to cause many debilitating side effects. Many people have to determine which is worse: the seizures or the side effects of medication. There currently is no cure for epilepsy. 3. You can’t die from epilepsy. More people die every year from epilepsy (50,000 people) than breast cancer (40,000 people). Deaths can occur due to seizures, including status epilepticus seizures, fatal injury during a seizure, suicide due to the isolation and loss of control with epilepsy, and SUDEP — sudden unexpected death in epilepsy. One out of every 1,000 people with epilepsy dies from SUDEP each year. 4. People with epilepsy can’t successfully manage their job responsibilities. People with epilepsy are found in all walks of life. Simply Google famous people with epilepsy and you will find lists of internationally known artists, musicians, athletes, writers, business people, and even presidents and Supreme Court justices. 5. You should hold down a person during a seizure. Never restrain a person during a seizure. They cannot control how their brain is telling their body to move and you will not be able to stop that. 6. People with epilepsy can swallow their tongue during a seizure. Swallowing your tongue is physically impossible. Never put anything in someone’s mouth when they are having a seizure, as it could cause further injury to them or to you. 2018-19


SPECIAL ADVERTISER LISTINGS Achievement Centers for Children The Achievement Centers for Children’s mission is to empower children and adults with disabilities and their families to achieve their greatest potential. The agency provides comprehensive high-quality programs and services in the areas of therapy, education, recreation and sports, and family support services to meet the needs of the entire family.

Sandra J. Buzney Co., LPA

Cuts N Curls

Sandy, a Licensed Independent Social Worker as well as an attorney, works closely with individuals and family members to provide them with quality legal services tailored to their situations. Assisted by experienced paralegals, Sandy focuses her practice in the areas of estate planning, planning for individuals with special needs, Medicaid planning and applications, and estate and trust administration. 216-283-0905,

Cuts N Curls in a unique adult and children’s hair salon, retail store and birthday party venue that prides itself on being sensitive to your family’s needs. The specially trained staff makes sure your experience is both safe and fun. Solon, 440-542-1750,

Akron Rotary Camp for Children with Special Needs Akron Rotary Camp, located on Rex Lake was founded in 1924 to meet the needs of children and adults with disabilities. It has become a cherished and trusted resource in the Akron area community, where campers are given the opportunity to experience traditional camping activities, develop relationships, learn life skills and create memories that last a lifetime. Please visit, or call 330-644-4512 for additional information.

Blossom Hill operates three family-style group homes, providing a loving environment and personalized 24-hour care for adults with profound intellectual and physical disabilities. Blossom Hill also provides short-term respite care and supported-living care options for families across Northeast Ohio. 440-8922042,

Autism Speaks Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow. Call the Autism Response Team at 888-288-4762 or visit for information and resources. Regarding Cleveland Walk, contact 216-524-2842.


Blossom Hill

Cleveland Hearing & Speech Center For nearly 100 years, Cleveland Hearing & Speech Center has been the premier provider of assistance to those who are deaf or hard of hearing, have difficulty speaking, have had a stroke or severe brain injury, or have other language or literacy delays and disorders. Its vision is a community where every individual communicates effectively. Call 216-231-8787 or visit The Center for Applied Drama and Autism CADA provides drama classes on Saturdays throughout the school year for youth ages 8-18 with autism and other special needs. Its classes are designed to encourage collaboration, curiosity and creativity in a fun and supportive environment. All classes are taught by co-instructors who are trained in applied theatre techniques that empower participants to develop social skills and practice self-advocacy. Current class offerings are available on its website. 234678-7830,

Cuyahoga Board of Developmental Disabilities The Cuyahoga County Board of Developmental Disabilities proudly supports and empowers people with developmental disabilities of all ages to live, learn, work and play in the community. For more information on services and resources, call 216-241-8230 or visit Eisner Gohn Group

Eisner Gohn Group is a leading resource for life insurance long term care insurance and long term disability insurance. Its team has subject matter experts in each of these disciplines so it can craft and deliver the most cost effective and efficient plans for clients. 216-378-4500, Hanna Perkins Center for Child Development Non-profit Hanna Perkins supports healthy emotional development in children through a range of services for children, parents, professionals and early childhood educators. The school serves toddlers through kindergarteners and includes Epic Early Learning for children with autism spectrum disorders. Other services include a mental health clinic and parent support — all based on a nurturing, respectful approach that is well-suited to the unique social-emotional challenges you and your child may face. Hanna Perkins is a socialemotional provider for the Special Needs Child Care program from Cuyahoga County - Invest in Children. 216-991-4472,

Julie Billiart Schools

With campuses in Akron and Lyndhurst, Julie Billiart Schools understand that students learn best when their differences are understood and accepted. Its team of intervention specialists, therapists and support faculty work collaboratively to offer a comprehensive academic and social learning environment for children in grades K-8 with autism, ADD/ADHD, and other specific learning deficits. Rooted in the principles of the Sisters of Notre Dame, the school welcomes all faith traditions. LEAP Linking Employment, Abilities and Potential (LEAP) is an agent of positive change, working to advance participation and equality in society for people with disabilities in Northeast Ohio. Founded in 1981 by people with disabilities, LEAP serves nearly 1,500 individuals annually, and works to promote social change to enhance their quality of life. To ensure an authentic connection to the consumers served, the majority of staff and board members at LEAP are people with disabilities themselves. Through a comprehensive array of services, LEAP assists people with disabilities in living independently in their own homes, participating in community life, and finding and maintaining employment. 216-696-2716, Loose Ends or Legacy

Loose Ends or Legacy founder, financial professional Crystal Cartwright, has been providing free special needs planning workshops and consultation for 10 years. She is a mother of five children, the eldest of whom has autism. The focus of the planning is accessing benefits (SSI/SSDI, Medicaid), maintaining benefits, and preservation of benefits through legacy planning. To find a workshop near you, set up a consultation or host a workshop, call 440-290-4119 or visit

Medina County Board of Developmental Disabilities The Medina County Board of DD is the community resource responsible for connecting, coordinating and funding services for individuals of all ages with developmental disabilities. We help with everything from early intervention and education for children to employment and community inclusive living for adults. We promote and empower over 1,250 individuals with developmental disabilities to live, learn work and socialize in the community. 330-7257751, McFadden Bushnell McFadden Bushnell, a small law firm led by two sisters who understand the value of family, focuses on special needs, elder law and estate planning services. Let the firm’s family help you and your family plan for your future, whatever your circumstances happen to be. 216-714-0090, Milestones Autism Resources Milestones Autism Resources improves the lives of individuals on the autism spectrum by educating, coaching and connecting the autism community with evidence-based information. Providing an annual autism conference, a free helpdesk, consultations and training, and a website with over 1,400 resources, Milestones is here to support individuals at every age, stage and ability. For more information, visit or call the free autism helpdesk at 216-464-7600. The Music Settlement

Highly qualified Board Certified Music Therapists at The Music Settlement’s Center for Music Therapy positively impact the lives of people facing a wide range of life’s challenges, using music-based interventions in a clinical setting to help meet specific individualized goals, support learning and transfer of skills, and improve quality of life. Engaging private or group sessions on our campuses or in community outreach may include singing, movement, songwriting, listening, instrument playing and more. 216-421-5806,

PSI Affiliates, Inc. For more than four decades, PSI has been committed to meeting the health and educational needs of children in Ohio’s schools. Its psychological, health, speech and educational services now serve tens of thousands of children each year. 330-425-8474, Solomon, Steiner & Peck Law firm specializing in special needs trusts, elder law, estate planning, disability, medicaid and veterans benefits planning, probate and trust administration, and corporate and succession planning. 216-765-0123, Summit County Developmental Disabilities Board (Summit DD) Summit DD helps people with disabilities achieve their vision of success. The levy-funded organization touches the lives of more than 4,700 children and adults in Summit County, empowering them throughout every stage of their lives. Total Education Solutions

Total Education Solutions provides innovative, quality services to individuals with special needs. Its multidisciplinary team maximizes your child’s potential by providing an array of services, including speech and language therapy, occupational therapy, behavioral support, physical therapy, and the Orton Gillingham approach. 888-4TES-KIDS,

Interested in copies of LiveSpecial for your school, organization or business? Contact





he Individuals with Disabilities Act mandates that school districts provide a free appropriate public education (FAPE) to all students identified as disabled under the act. An Nessa G. Siegel appropriate education has been deemed by the courts as “an education reasonably calculated to provide benefit” to meet a child’s needs. Therein lies the rub. Appropriate and reasonable often are defined differently by parents and school personnel. Nonetheless, effective communication can prevent escalating problems associated with the provision of FAPE. The goal must always be to solve questions in a positive manner and as quickly as possible. Whether your child has special needs or not, these suggestions will help you negotiate issues with school personnel. It is not unusual for parents and districts to have different academic and behavioral expectations for students. These differences can cause strong emotions and high anxiety. Therefore, it is critical to solve these problems at the lowest level, before people become entrenched in their opinions and power struggles ensue.

50 2018-19

Making the most of your IEP Meeting By Nessa G. Siegel, Esq.


6 Credibility, based


Failure of the meeting of the minds despite belief that this has occurred

7 Patronization,


I ntentional vagueness, misleading facts, withholding of information, misstating laws


Intimidation — one parent shows up, and 16 school personnel show up with no prior notice


Body language — nonverbal eye rolling, heads down, folding of hands over chest during the entire meeting, placement of watch on the table, private conversations during large meetings

after a meeting has been held

on competence and trustworthiness comparing to children who are not the subject of meeting, not listening to a parent or district suggestion, the cost of educating the child is made an issue, no positive discussion

8 Loss of trust, which

leads to fear for the student and causes insecurity for all parties; the relationship becomes worthless

When any of these processes usurp the subject of the meeting, the question becomes how to solve the situation before parents seek litigation. When you negotiate to resolve problems, you must put yourself in the other person’s position. Remember there is no “complete win” for either side, even if you proceed to litigation. Ask yourself, how does the other side see the problem? What are they afraid of? Listen more than you talk. Remember that everyone wants to save face. No criticizing or judging; only positive interaction will settle the concerns. Unfortunately, parent and school conflicts are normal and inevitable. Your goal is to be positive and to avoid litigation.


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