40 minute read
Questions to ask day service providers
Why Experience Matters When Looking for Day Services and How to Ask Providers
When you and your family are looking for services, experienced staff is an important factor to consider. Question the providers about staff’s direct work experience with adults with developmental disabilities.
Experienced staff have long tenures and create an environment with very little staff disruption. All of this leads to your child’s stability, growth, and skills achievement in the day program setting. The security and relationships they have with staff and peers help your child identify the right path for them.
Direct service staff should be highly trained to respond to any situation that may arise. Training should take place annually with diverse subjects offered that exceed state mandates.
Communication is the foundation of care. Experienced staff understand your shared goals — to improve well-being, confidence, quality of life and participation in family and community. With staff experience comes the ability to interpret verbal and nonverbal communication. Though every individual is unique, success rates for quality communication between staff and individuals improve experience.
When you are touring a day Program be sure to ask questions such as:
• What is the staff turnover rate? What is the staff to person ratio? • How many years of experience do your staff have in this field? • What does a typical day look like? • How is information/progress reported to me? As parents and or family members you are your child’s voice and you must speak up and advocate for them to have the best, most experienced staffing possible.
Navigating Life’s Transitions
Alana Gohn, who was the inspiration for LiveSpecial.com, gains skills and independence as she grows.
By Angela Gartner
(above below) Alana Gohn, dad, Scott Gohn and mom, Elaine Eisner. (far right) Alana loves riding with her dad Scott Gohn on the two-person tandem bicycle. (above middle) Alana enjoying herself on the waterside. A lana Gohn, 13, of Solon, who was diagnosed with microcephaly as an infant, is becoming more independent, according to her mom, Elaine Eisner.
“She is like all teens who get a little moody,” Eisner says. “She is a little more stubborn and does a sit down strike if she doesn’t want to do something.”
This can be difficult because Alana is nonverbal, but Eisner says as parents, she and her husband, Scott Gohn, are trying to let her be as independent as possible.
Alana, who has been swimming since age 1, has become more adventurous and enjoys going down waterslides.
“We are letting her be more independent in the pool,” Eisner says, adding that recently, Alana was able to go play with other kids, while still under the watchful eyes of Eisner and Gohn.
“We were so happy,” she says, adding it allowed Alana to have some distance for the first time from her parents.
Alana’s not just a swimmer, but also skis and hasn’t missed a season since she was little. She also loves riding with her dad on the two-person tandem bicycle.
Eisner says their family has tried different activities with Alana and while some have worked, some haven’t. She recommends that families just try new things.
“I think the more things you try, something will resonate with your child,” she says. “It’s important to keep individuals with special needs as active as possible to help live a healthy lifestyle, instead of a sedentary one that could lead to health issues such as weight gain. There are many family support (options) for the counties you live in and numerous places to get children engaged in the community.”
One of the biggest challenges, Eisner says, is getting caregivers and the costs.
“It gets more and more difficult as the kids get older,” she says. “We just don’t go out as much or try to take Alana with us. I see it being a challenge and families are struggling.”
As Alana grows, Eisner says they are still working on inclusion and social aspects. Those years of everyone in quarantine during the COVID-19 pandemic made it difficult for social interactions.
Eisner says they have used services like Friendship Circle, which provided an opportunity for Alana to meet a new friend and spend time with them weekly.
“I feel strongly that we should always be keeping her moving forward,” Eisner says, adding that they don’t yet have an answer of what the future holds for Alana.
“(We’ve started) thinking about what she can do and continue with therapies the rest of her life,” she says. “We always think about her and we will still be doing anything she needs and whatever we can for her no matter what age or grade (she’s in).”
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STRONG WOMEN POWERFUL VOICES
By Angela Gartner and Lindsey Geiss • Photography by Mariana Edelman
Being a champion can mean to inspire, to take on a cause, be a voice in the community and to know how to be an example for others to follow. NCJW/Cleveland receives submissions from individuals for its Celebration of Champions Awards, which provides an opportunity to honor people living with a disability and people making a difference for those with disabilities. In 2022, 15 people were honored with gold, bronze and silver awards, along with a $500 prize toward an approved program, service or adaptive device. The award ceremony was held in-person in June at Landerhaven in Mayfield Heights. Here’s a little bit about each winner to show why they were chosen for these honors.
Gold Awardees
OLIVIA DEPIORE, of Twinsburg, is a champion for inclusion, inspiring others through her self-advocacy, hard work and training as an international model paving the way for people with Down syndrome in the fashion industry. With a contagious smile and positive attitude, the 25-year-old has graced the covers of magazines like “Haute Ohio” and modeled at New York Fashion Week, in addition to fashion weeks in Ohio, Paris, Dubai and Milan, plus various competitions. A shopping trip for a high school dance dress led to a photo shoot with local designer/boutique owner Darlene James, launching Olivia’s modeling career.
Olivia stresses the importance of kindness, manners and being polite, while Vicky advises other parents and advocates, “Don’t accept mediocrity from your child or from society. Always challenge and encourage others for acceptance, and say it’s okay to be different because we all are.
Her path to get here was not without obstacles — Olivia is a childhood cancer survivor. Diagnosed with leukemia at age 6, she underwent chemo and treatments for three years. She and her family became active in the American Cancer Society, raising more than $100,000 for cancer research and treatment.
Aside from her large supportive and inclusive family, Olivia cites Matthew Socrates, her “amazing teacher of four years at Twinsburg High School," as an advocate and influence in her life, including her dog’s namesake. The two still keep in touch.
As a student of modeling, Olivia spends hours each week reviewing books, magazines and videos, practicing poses for both still shoots and the runway. Outside of honing her craft, she works at McDonald’s and is looking to challenge her skills through other opportunities. "We are making strides as a society, trying really hard to accommodate, but we’re not there yet," her mother Vicky says. "I appreciate when companies make an effort."
Olivia recently was invited to join a new nonprofit board and will soon be recognized as a “Profiles in Diversity Journal” Women Worth Watching in Leadership. “The community is amazing,” Olivia says. “I’m really happy and proud (about getting calls from young ladies with Down syndrome, autism or who are in wheelchairs, and being invited to speak). It makes me more confident being out there.” We all have some type of skill," Olivia says."Take that skill and run with it. I want to teach others to know they can do what I am doing. It’s possible." AVA ZAHLER, of North Canton, is a nationallyranked figure skater whose contributions on and off the ice make her a champion. Driven by a passion for helping others and her own journey with severe learning disabilities — including dyslexia — this 14-yearold Hoover High School freshman’s community involvement supports children with and without special needs, adults and animals alike.
Ava’s determination and compassion were apparent at a young age. Labeled “failure to thrive” as a baby in foster care in Guatemala before being adopted at 5 months, she grew into a gifted skater (starting at 14 months), singer, dancer and cheerleader.
Ava now works as a volunteer teacher at Center Ice Sports Complex. She also has contributed to her dance studio’s effort to purchase dance wheelchairs for students with disabilities. She created an audio book section in her school library. Her project, Special Books for Special Kids, received a Youth in Action grant sponsored by Character Counts in North Canton and was honored by the Junior League of Stark County. Her efforts also raised $200 for the Children’s Dyslexia Center of Canton to purchase special phonics books for children. She applied for and received a second Youth in Action grant in middle school for her Birthday Wish Project, which raised money reading and art supplies, as well as gift cards for Volunteer Services at Akron Children’s Hospital.
“When she was diagnosed in third grade, the specialist said it was one of worst cases she had ever seen,” Ava’s mother, Mary Lynne says.“School is hard. A 15-minute assignment may take her an hour, so she could be doing homework for three hours each night. Ava works really hard, and we are so proud of her.”
Ava wants people to understand that children with dyslexia can be successful readers. "To help others understand what it is like to have an invisible disability," Ava explains, “It feels annoying and frustrating, like everyone is watching you, wondering why you can’t do something or why it takes you longer.”
She advises other youth, “Even though it can feel awkward, ask for help.” The Zahlers encourage trying new activities and asking about needs in the community to identify opportunities to help.
“It feels very awesome to get this really big honor,” Ava says. She wants other youth to know that, “things may not be the best right now, but it gets better as time goes on. Don’t give up. Keep pushing.”
CASEY FOLLOWAY, of Wooster, understands how sports provides a multitude of opportunities for mental and physical health. He says that as a kid, he always wanted to be on the court like basketball player LeBron James. Casey, who was born with spina bifida, has been involved with Adaptive Sports Ohio and was the inspiration for the organization. His mom, Lisa Followay, got the idea because of his passion for sports, and wanted to give him and others the opportunity to play.
“I really struggled mentally with my emotions when I was very young,” Casey says. “In 2009, (my mom) had a great idea of starting a non-profit organization to reach out to other people in the community with the same disabilities.”
Adaptive Sports Ohio has grown, and its mission is “to remove barriers to ensure that individuals with physical disabilities have a chance to play and utilize sports to elevate ability and empower futures.” It provides programs in adaptive sports, access to equipment, and school support for those who want to participate in interscholastic sports.
Casey is an athlete in sled hockey, basketball, and track and field, but he says he’s tried pretty much everything, from lacrosse to tennis. In fact, as a champion, he donated the $500 award to Adaptive Sports Ohio for sled hockey equipment.
He’s most passionate about track and field, competing at high levels including Team USA in the Para-Pan American Track and Field Games. He was the first wheelchair racer to join his high school track team in the Ohio High School Athletic Association.
He hopes to represent the U.S. in the Paris 2024 Paralympic Games for track and field in the 100 meters.
For everyone interested in participating in a sport, it doesn’t have to be elite. Casey stresses the importance of getting involved.
“A lot of people hesitate to get into sports because they don’t think they have the physical ability and sometimes struggle on how it will benefit them as a person,” says Casey, who also works at Adaptive Sports Ohio. “(We) try to find ways to show these athletes what is possible regardless of disability or age.
“We realized that we were not alone, there were people with the same struggles — and not just with people with disabilities. Thankfully, I found my group of people who have helped me. My mission in life is to show people that they are not alone, they can just do things in a different way.” adaptivesportsohio.org
HEIDI SOLOMON,
of Beachwood, is the program manager for the Horvitz YouthAbility program, an initiative of the Jewish Family Service Association that serves disabled and at-risk youth by engaging them in volunteer service, vocational activities, and social enrichment. The YouthAbility program participants are referred to as ambassadors to acknowledge their role in representing themselves, the agency and others just like them. Heidi, who has run the program for nearly 17 years, says it’s an honor and a privilege to work with the YouthAbility ambassadors, as she believes they are among the greatest young adults in the area. “I feel so fortunate to be in the position to highlight their abilities to the people in the community,” she says. Heidi has assisted thousands of ambassadors, all of whom she has tried to help find meaningful experiences that match their strengths, abilities and availability. “I think each and every person has unique gifts — they each have individual strengths and I aim to put them in situations structured for their successes.” she says. "The goal is always having them moving one step in the right direction -- with supports as needed." She also has organized various projects, including using art to decorate a van with the youth group with the theme, “Promoting values to help the community.” “YouthAbility is dedicated to vital values such as diversity, inclusion, respect, teamwork, kindness and more, which are written on the back of our van to spread positivity,” she says.
When possible, Heidi encourages YouthAbility ambassadors to advocate for themselves. During a trip to Washington D.C., the group had meetings on Capitol Hill to encourage inclusive language in a bill. Locally, ambassadors attended an RTA meeting to express the need for access to transportation.
She has worked with business leaders in the region to educate and help support them in understanding what people with disabilities can bring to their organizations.
“If someone is not treating our group fairly, I see it as an opportunity to engage and educate,” she says. “I want to share the belief that people with disabilities can enhance our communities instead of being pushed aside.” “I think the Cleveland community, has so many great opportunities for our young people,” she says. “If we all open our minds to the possibilities of their abilities — we will all be inspired."
Salina Miller, A.A., of Maple Heights; Patricia Parker, B.A., of Olmsted Falls (previously Maple Heights); and Nikki (Charisse) Montgomery, M.A., M.Ed., of Euclid, all are devoted parents of children with disabilities, nonprofit leaders, and champion storytellers shining a light on the path for successful caregivers and advocates. Together, they wrote the book, “We Dare Be Brave: African American Mothers and the Emotional Journey of Raising Children with Disabilities,” which honors and validates the emotions of parents raising children with disabilities.
PATRICIA PARKER, of Maple Heights, is the founder and director of R.E.A.C.H. Services (Resource, Education and Community Help), a nonprofit founded in 2012 that helps families with disabilities in Cleveland and surrounding suburbs navigate and connect to services. As the parent of two adult sons, she shares how her now 32-year-old son Matthew’s autism diagnosis changed her life. “I developed this purpose for him to reach his potential that overflows to other families,” Patricia says. “I started this journey in the early 90s when there was very little information and resources. Especially being a person of color, where I was living, navigating, understanding and identifying systems was very difficult for me. I felt so isolated and had to go outside of my community to find any supports. I definitely want to make it easier for someone else, so no one else has to go through the significant struggles I went through.”
Patricia stresses self-care and encourages families to look at mental health services as a resource, “I was very transparent about PTSD and mental health struggles as caregivers often suffer in silence,” she shares. Also, addressing, a perhaps lesser-known concept that so many caregivers feel — chronic sorrow. A new collaboration between R.E.A.C.H. Services, Mother 2 Mother, and Hope Behavioral Health Services is working together to address mental health, psychotherapy and spiritual care through parent support in conjunction with therapy services. Facebook.com/reach4service
NIKKI MONTGOMERY strives to improve equity, inclusion and the quality of family engagement as executive director of Madvocator Educational and Healthcare Advocacy Training, which helps build advocacy skills for families and trains professionals to engage more effectively with them. Her experiences as an educational psychologist, communications expert, patient advocate, and the parent of a son with complex healthcare and educational needs led her to create Madvocator (“Sometimes, you have to get a little mad to change the world”) in 2015. Nikki also is the author of the “Super Safe Kids” book series and curricula, which includes “The Spine Surgery Book for Kids,” co-authored with her son, Richie. Aligned with evidence-based practices and national safety initiatives, the materials focus on family participation and self-advocacy as tools to improve safety for children, especially those with disabilities or complex medical needs.
Nikki’s extensive community involvement extends from local to national initiatives to improve health, eliminate disparities, and increase activation and engagement. It includes serving on the Board of Directors for University Hospitals Rainbow Babies & Children’s and on the Global Patient and Family Advisory Board for The Beryl Institute, as well as an advisor for the Center for Medicare and Medicaid Services Person and Family Engagement Network, among other affiliations.
“I want professionals and families to be empowered to work together for the best outcomes and shift the focus to those with the greatest need,” Nikki says. “Everything I do falls in line with that.
“I appreciate there are spaces in the community that recognize the efforts made on behalf of those with disabilities, she says. “There is still much more to do. [LiveSpecial] sets up an area we should be recognizing, and it does our community good to be working in service of those with disabilities.
“Everyone needs champions,” she emphasizes. “I’m hoping my son will be his own, but until then I take on that role and help him build his skills. You don’t have to be in the field of serving people with disabilities to actually serve and help.” (madvocator.org)
SALINA MILLER’S parent connection group, Mother 2 Mother, is a 501c3 organization that hosts virtual monthly support meetings, as well as outings, training and education. “We are taking everything we have done since 2017 and conducting research on the actual needs of the community to ensure gaps are being filled,” she explains. A mother of two sons, her passion for service emerged with the birth of her son Elijah, who has multiple complex medical conditions, including autism. Salina also serves as a parent representative on Ohio’s State Support Team 3; a member of University Hospitals Rainbow Babies and Children’s Patient and Family Partnership Council; and a parent involvement specialist for Warrensville Middle School. She also has worked for Milestones Autism Resources as the diversity, equity and inclusion coordinator and is a recipient of the National Nurses Coalition’s Unsung Heroes Award. She advises families to “have a safety net even before the transition phase for who will take care of your child if you leave this world. “People forget that children are only in the school district for a certain amount of time, and they are adults forever,” Salina explains. “Some are not thinking beyond the day-to-day. Consider what adult life looks like, from housing to financials. Put together a will, and connect with your county board early.
“We need community,” she adds. “Even though I created one, I realized I needed them more than I think they needed me. My community has been an asset to me and Elijah.” mother2mother.info
DOMINIC LOPEZ, 9, a baseball player and the youngest champion, is open about his autism diagnosis and is helping others to understand that while it’s part of his identity, it doesn’t define him. “People sometimes think you can’t do that because you’re autistic, but you can really do anything, if you want to do it,” he says. His mother, Estee Ezinski, says Dominic was 2 when he was diagnosed with autism. The family went through the steps to support him, including early intervention. Dominic has spoken on a panel at the Milestones Autism Resources National conference and works with Crisis Intervention Team training of police officers to help their interactions with people who have autism.
“In their mind, they have created this image, but when he comes on camera, he presents a typical 9-year-old boy,” Estee says. “It’s really good for them to realize that there’s not a face to autism; every kind of disability is different for anyone.”
When Dominic found out he was going to be a champion, he was excited. There’s been a lot of things to be happy about this summer, including his favorite pastime: baseball.
“It’s fun playing; I like making new friends and playing the sport,” Dominic says. His mom says it also has helped him socially and with his processing skills.
Dominic says that if something goes wrong on the field, like an error, “to take deep breaths, don’t worry and just (focus) on the next time. Just believe in yourself and don’t think you can’t do it,” he says.
DOROTHY MILLER, of Cleveland, has dealt with hearing loss since she was in her 30s and became her own advocate, learning everything she could about it. She discovered the hearing loops while visiting family in England. According to Dorothy, the loop provides a direct transmission of sound into the hearing aids of people who can get connected. Dorothy has become a voice in the community to get these loops installed in public places. She is a founding member of the Loop Initiative Group of Northeast Ohio (LIGNO), whose goal is the widespread availability of hearing loops. She helps others understand the experiences of people with hearing loss. Dorothy has learned how technology can be utilized to maximize engagement with the world around those with hearing loss, specifically hearing loop technology. While there are many loops in other states, she says more and more churches are beginning to recognize the importance. She says this is what drives her, to make it widespread in Northeast Ohio. “To install a loop, (they) will find it fairly easy,” she says. “(It’s important) to be able to participate. (People who are hard of hearing), don’t know what is being said. It’s the ability to communicate in civic or personal life.“I am hoping theaters and places, such as city council meetings, will place loops,” Dorothy adds. “More people can go and participate, as right now they are shut out.”
SEAN WALKER, of Parma, champions access to communication support and team sports for people with disabilities, never letting cerebral palsy, quadriplegia and scoliosis slow him down. “I don’t look at my life as being disabled,” he says. “I live my life because it’s my life. Until sixth grade, my mom did all my advocating, then I started participating at my own IEP meetings and that taught me how to advocate." Sean uses eye gaze technology and a fully functioning laptop to communicate, with support from a home health aide as needed. He now teaches others how to use communication boards and related tools, something he is passionate about as an ambassador for PRC-Saltillo, a global leader in augmentative and alternative communication (AAC) solutions and assistive technologies for people with speech disabilities. Sean is passionate about helping others. Sean also has served as a Good Life Ambassador for the Cuyahoga County Board of Developmental Disabilities since 2017, presenting on disability topics and building bridges in the community. When he is not working, he enjoys sports. He coaches boccia, a Paralympic precision ball sport similar to bocce at Youth Challenge. He studied and taught himself the game, then built an eight member team of various ages that will soon compete at the National Championships in Cedar Rapids, Iowa. “All you can do is set the bar high and roll with it when you need to,” Sean says.
Bronze Awardees
PATRICK MCMYLER, of Cleveland Heights, is a champion advocate who draws on his own life experiences with cerebral palsy to assist others in advocating for themselves. As a Good Life Ambassador for the Cuyahoga County Board of Developmental Disabilities since 2021, he shares more than 40 years of personal stories and expertise as a self-advocate to educate and inspire the community to be more inclusive. Known for his sense of humor and passion for writing poetry and music, friends and family refer to him as “an excellent teacher.” After graduating from Cleveland Heights High School, Patrick worked at the United Cerebral Palsy workshop and volunteered at a music studio downtown where some of this work was played on WMMS radio. At the age of 35, he went back to school at Cleveland State University to study music and English.
He credits his parents, brothers and sisters with providing a strong foundation and nurturing his passions.
“If you see your child has some type of talent, please work on that with them,” he advises parents. “There are so many obstacles that disability takes over, but I believe that talent or passion will bring them out of their shell.”
When asked about overcoming challenges and what it takes to be a strong advocate, Patrick says, “I learned to get a backbone. Keep your eyes and ears open, and be positive. Always fight for the underdog, because it can make them believe in themselves and they can be a better person. We need people to stand up for those who can’t stand up for themselves.”
JUSTIN MEADE, an officer with the Hubbard Township Police Department, recognized there needed to be more training to first responders and other organizations on their interactions with people with autism and other special needs. He knows the importance professionally, but also personally as a father of a 7-year-old son with autism and epilepsy. As someone who experienced this interaction on both sides, he founded the Autism Awareness Training and Acceptance Program (AATAP) in 2019. The program provides free awareness and acceptance education, practical crisis intervention and de-escalation training to first responders and other organizations. AATAP also provides resources and training for people with disabilities and their families.
Justin says the program has provided this free training to 650 first responders, most in the Northeast Ohio region, but also other cities in Ohio and different states.“We pretty much go wherever and donate our time in doing it,” he says. “We not only help first responders, but also work with churches and other organizations that are trying to be more inclusive and accepting.”
Justin stresses the importance of this being a two-way street, in which safety and quality of life can be improved for individuals, their families and first responders.
He suggests that families who have individuals with special needs reach out to their first responders, particularly police and fire departments. “Set up a time for their loved ones to meet them, check out the emergency vehicles, take that time to get to know (the first responders),” Justin says, adding it will help their interactions with the responders in emergency situations, who will in turn have a better understanding of how to help your loved one. Justin says families can recommend the free AATAP training to the first responders. “It’s really important, and if I had my way, every first responder would become an expert on this,” he says. “We know it’s not feasible (right now), but we do the best we can.” Facebook.com/Aatap4all
DOUGLAS VECCHIO, 28, said that when he was younger, he thought he might be a doctor. Then he realized there was a lot more to the healthcare field than patient care. “There is so much (happening) behind-the-scenes,” says Douglas, who explored the different programs. “Information technology seemed like a perfect fit.” He went to Lakeland Community College for a registered health information technician (RHIT) degree. While Douglas had an interest in healthcare and is currently working as an RHIT, his advice to others is to try different things, shadow jobs and talk to other people. “Just think positivity,” he says. “It’s not always easy to do, but take one day at a time.” His mom, Leslie Vecchio, told him, along with his twin brother Kenneth, that they received the LiveSpecial.com Celebration of Champions award in which she submitted them both. “It felt nice to be honored and recognized for my work and for my brother,” he says, adding his goal is to keep moving up in his job, and get a place of his own with his brother. Douglas says people with disabilities just have to advocate for themselves and to know their strengths and weaknesses. “If you are struggling, ask for help,” he says, adding that his parents tell him if there is something wrong, to speak up. "Also, try not to compare yourself to others.” He hopes employers will take time to educate themselves about workers. “People with disabilities are just as capable as someone (without disabilities),” he says. “There are laws for accommodations (referring to the Americans With Disabilities Act), but there is more that could be done.”
KENNETH VECCHIO, 28, a graduate of Brush High School, attended Auburn Career Center. He then began to apply for jobs and was hired at a machine shop in Chesterland. “The training was mostly on-the-job, so they helped me out learning the different machines," he says. "I like working at the machine shop, working with my hands,” adding that was something he liked to do when he was younger. While getting into the workforce isn’t always easy, Kenneth advises people who are still looking for employment to be patient. “Keep applying, because you are not going to get the first job you apply for," he says. "You learn from interviewing and talking about the job. Just don’t give up.”
Kenneth adds that having the right supports, whether it’s family or other organizations, who can help with job skills and training is important.
He recommends finding something you are really passionate about and trying to find a job in it. He also says not to be afraid to ask for help or support.
While not at work, Kenneth says he likes hanging out with friends and watching sports. His hope for the future is to have a place of his own with his brother and get a new car.
He advises people with disabilities to create awareness in the employer community.
“Let employers know that regardless of a disability, you should be able to do the job like anyone else,” Kenneth says.
MOLLY DURHAM is a smart, funny, fourth-grader at St. Jude School in Elyria. Molly, who was diagnosed with cerebral palsy, loves to sing, is a cheerleader, dances for North Pointe Ballet and has begun classes at Dancing with Wheels. She also likes to hang out with her close friends and talk with them on the phone. For her future, she hopes to be a first-grade teacher. She does have some experience in front of the classroom already, as she has been sharing her personal story and experience to classes in her school. Her mom, Sarah, says it began in kindergarten when the school, Molly being the inspiration, celebrated National Cerebral Palsy Awareness Day, which occurs on March 25. Sarah says Molly, who wrote her speech to the classes, provides an opportunity for students to ask Molly questions and bring awareness to cerebral palsy.
“I can express my feelings and sharing it with my friends makes me feel proud,” Molly says. For next year’s awareness day, Sarah says Molly has big plans.
“I think it has helped her to be comfortable talking about her disability,” Sarah says, adding she is proud of Molly for wanting to share her story.
For Molly, her advice to others on how to be a self-advocate, she says “You should be yourself and always remember that you can always share your feelings with others.”
Family has always been paramount to Lois Davis and her late husband, Larry. When Lois saw how LiveSpecial. com could help make families that have been touched by special needs feel more connected, less stressed, and have the ability to access the resources they need Mia Buchwald Gelles with just the click of a button, she and Lois Davis wanted to be a key part of its development.
Over the years, Lois has supported the creation of our LiveSpecial.com website and the annual LiveSpecial.com magazine. But she knows that no one operates in a bubble — and sometimes it is the unseen champions who are among those working the hardest to make a difference.
NCJW/CLE wanted to honor Lois in some way for her ongoing generosity and commitment to the organization, which is why it created the Lois and Larry Davis award.
Announced at the 2022 Celebration of Champions ceremony, Milestones Autism Resources won the inaugural Lois and Larry Davis Award.
The award recognizes an organization that has had a large impact on the special needs community in Northeast Ohio.
“Lois has been an amazing friend to Milestones,” says Ilana Hoffer Skoff, executive director and co-founder of Milestones, in the video interview. “How (she) approaches problems within the community. When I see (the work she’s done), it always comes from a place on how (she) can help people and make sure to preserve people’s dignity.”
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LiveSpecial.com has grown and developed into more than just a website. It offers support through community programs, in addition to publishing an annual magazine that reaches 25,000 readers locally and is accessed by thousands online.
NCJW/CLE has always been interested in supporting ALL members of the community. In the 1980s, volunteers canvassed the area with measuring tools to collect data on accessibility and publish an accessibility guide. The guide helped people to know details about access to spaces. It also helped building management learn about issues like narrow doorways and entrances with steps. (ADA guidelines published in the early 1990s addressed these issues for all public buildings.)
A team made up of NCJW/CLE and other interested community members met to brainstorm ideas when Elaine Eisner, an NCJW/Cleveland member, approached us with the dilemma of finding appropriate providers for her child, who was born with multiple challenges. The team recognized that this was a community-wide need and NCJW/CLE took on it as a signature project.
“I can remember the very first planning meeting,” says Cindy Glazer, a retired educational specialist who chairs the LiveSpecial.com committee. “We were in a room full of strangers, each with a unique interest in the world of special needs. The task just seemed to grow bigger and bigger as we listed who we wanted to help and what we wanted to include in a comprehensive list that would serve the entire community.
“Once the decisions were made, NCJW/ Cleveland volunteers began to populate the site,” she adds. “We tried to select the very best providers with the most to offer. Over time, the site became a reality. Over the years it has been tweaked, adjusted and expanded.”
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(Top) Mindi Axner, (far left) executive director of NCJW/CLE with supporters of LiveSpecial. com, Ruth Lieberman and Lois Davis. (Top Right) Genny Kanka at the first Celebration of Champions event in 2017. (Middle) Alex (left) and Cordale (right) with LiveSpecial.com staff, which attend various events and programs in the community. (Second middle photo, from right) Cindy Glazer, committee chair, Wendy Spitz, LiveSpecial.com coordinator, Kerry Agins and Nessa Siegel. (Far left) LiveSpecial.com magazine celebrates its 8th annual edition and relaunch of the website. Check Facebook.com/ LiveSpecialNEO for programs.
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Wendy Spitz, a special educator, was hired as coordinator in 2014 to help spread the word about the website.
“When I first came on board, the hope was for me to facilitate community engagement and to market the site to get more resources and more families to use the site,” Spitz says. “As my interaction with the community increased, I realized the need for educational programming. We began offering free programs with local experts on topics like IEPs, 504s, behavioral challenges, availability of services. We also joined a group of like-minded organizations to offer sessions relating to transition, that time when families lose the support of the school districts.”
“Adding a LiveSpecial.com coordinator helped us become a valued resource in the community in new ways,” Glazer says. “Not only did the site assist families, but the educational programs brought a larger audience, demonstrating a huge need. The knowledge shared and the partnerships we formed have been a huge valueadd to LiveSpecial.com. Wendy has also been instrumental in connecting NCJWCLE volunteers with partner organizations for shared inclusive activities.”
“I love being a local resource, often helping individuals develop a plan of action” she says.
LiveSpecial.com continues to change with the times. As an example, during the COVID-19 pandemic, it was obvious that many families preferred to attend virtually. The virtual option has since expanded its reach throughout Ohio and beyond, and a virtual option will continue to be offered whenever possible.
The website, which has grown to well over 1,200 providers, also offers all LiveSpecial.com magazines, in addition to other publications, a video gallery of professional presentations, and a posting of upcoming events.
The LiveSpecial.com team was privileged to honor some very special individuals at its five-year anniversary celebration. Many of their unique stories of success and perseverance have been highlighted in the magazines. The awardees from this year’s 10-year Celebration of Champions are highlighted in this issue. We know you will be moved by their stories.
Cindy Glazer, a retired educational specialist, spent her career serving students with special needs and their families. She served on the committee to create LiveSpecial.com and continues to chair that committee.
Wendy Spitz, LiveSpecial.com coordinator, is a former social worker and special educator. She continues to collaborate with community partners to expand the support and reach of LiveSpecial.com.
For more than a century, visitors have been coming to the Cleveland Museum of Art to gaze at its collection, with works stretching back thousands of years. Admission is free and tours are available for those with visual or hearing impairments. The museum is fully accessible, with service animals permitted and wheelchairs and strollers available for use. Also in the city’s University Circle neighborhood is the Cleveland Museum of Natural History and the Cleveland History Center.
Not far from University Circle, the Cleveland Cultural Gardens were dedicated more than 100 years ago. Each garden highlights a different ethnic group that made Northeast Ohio its home. The gardens are all viewable — and most are accessible — from the street.
Cleveland Metroparks
and the Cleveland Metroparks Zoo also offer a variety of sensory-friendly accommodations and inclusive activities, including beach wheelchairs at Huntington and Edgewater beaches, sensory bags at the zoo, and therapeutic riding at various parks.
Downtown, on the shore of Lake Erie, is the Rock ‘n’ Roll Hall of Fame. Opened in 1995, the accessible I.M. Pei masterwork features elevators and wheelchair seating in the hall’s viewing theaters. Service animals are allowed at the Rock Hall, and sign language interpreters are available (reservations must be made at least two weeks in advance).
Cleveland Rock Hall has sign language interpreters available, accessible features and service animals are allowed inside the Hall. (rockhall.com)
Cleveland Metroparks offers Inclusive activities, sensory bags and spaces. Also, allterrain beach wheelchairs at available at Huntington and Edgewater Beach. (clevelandmetroparks.com)
Just west of Cleveland is the area once referred to as “Vacationland,” now called Shores and Islands Ohio, a popular vacation destination for the entire state and beyond.
Parks throughout Northwest Ohio — many of which include picturesque pathways along the water — are accessible, with Maumee Bay, in Oregon, and Port Clinton Beach offering Mobi Mats for wheelchair users. Maumee Bay, also has an accessible nature center and a wheelchairaccessible fishing pier — as does Catawba Island State Park.
Accessible ice skating is available at Ottawa Park in Toledo, and the Toledo Metroparks offer many adaptive programs, including archery,
(Left)"Flagship Collaborative Play Place" an all abilities, accessible playground at Lakeview Park, 1100 E. Perry St. (SR 163) Port Clinton) Facebook.com/FlagshipCollaborativePlayPlace) (Right) Mobi Mats for wheelchair users at Port Clinton Beach.
climbing and kayaking.
In Port Clinton, African Safari Wildlife Park offers a driving tour through a variety of wildlife, and Cedar Point, in Sandusky, Guests with mobility or cognitive limitations can register for the park’s Boarding Pass program, offering special access to some attractions. Sign language interpreters also are available (if requested in advance) for live shows.
Columbus Zoo and Aquarium offers accessible viewing and sensory-friendly offerings. (columbuszoo.org)
Get hands-on STEM experiences in accessible spaces at COSI. (cosi.org) The city was built specifically to be the state capital. Accessible tours are offered throughout the capitol grounds.
COSI museum features accessible spaces and rentals of strollers, scooters and wheelchairs. There also are maps available to identify sensory-friendly environments. Sensory bags — which include noise-canceling headphones, fidgets and bubbles. There also is a calming room.
The Columbus Zoo offers sensoryfriendly areas and admission times, as well as sensory bags. The zoo also prioritizes accessibility, offering wheelchairs and scooters for rental, and granting free admission to any caregiver accompanying a visitor.
Locations such as LEGOLAND
Discovery Center, Wexner Center for the Arts, Easton Town Center
and more is where service animals are welcomed and can be accommodated, and large print and braille documents may be available on request, alomg with assistive listening devices, audio descriptions, and captioned performances. If you are looking for dining, RH Rooftop Restaurant and Condado Tacos are some options.
Experiencecolumbus.com provides an accessible guide for more info.
Almost a destination in itself, the Cincinnati Museum Center features no shortage of activities, with the Cincinnati History Museum, the Children’s Museum, the Museum of Natural History and Science, the Nancy and David Wolf Holocaust & Humanity Center, and the Robert D. Lindner Family OMNIMAX Theater all under one roof. The museum center is an Art Deco masterpiece that was originally built as a central station serving the city’s seven railroads in 1933. As such, it’s spread out, but built for transportation (wheelchairs are available for a refundable fee).
One of the newest parks in the city is Smale Riverfront Park, opened in 2012. Located between Great American Ballpark, the home of the Reds, and the Bengals’ home of Paul Brown Stadium, the park is billed as “Cincinnati’s Front Yard,” and features wide paths for wheelchairs, an accessible carousel and fantastic views of the Roebling Suspension Bridge, linking Cincinnati with Northern Kentucky.
In addition to being home to the Reds, Great American Ballpark is home to the team’s hall of fame and museum Both the ballpark and museum are accessible. The museum is open on days when the Reds are on the road. Newport Aquarium offers 'touch' experiences, assisted listening devices for shows in Shark Ray Bay Theater, noise-cancelling headphones and lighted magnifying glasses are available for visitors.
Giant foot piano Smale Riverfront Park at the Banks (visitcincy.com)
Great American Ballpark, (mlb.com/reds/ballpark) Cincinnati Energy Children's Museum,(cincymuseum.org)
