LiveSpecial 2020-2021

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FREE

2020-21 Northeast Ohio Edition

A RESOURCE GUIDE FOR INDIVIDUALS WITH SPECIAL NEEDS AND THEIR FAMILIES

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Communication

Acceptance of Abilities

AL FUN VIR TU IDE A S

ACCESSIBLE FOR ALL

l Ag Way s for Al t to Connec

es

BRINGING

Services

TOGETHER

Accommodate

PATHWAYS

EDUCATE, ADVOCATE, SUPPORT

MEET NEEDS

INCLUSION

EQUALITY

ACTION

HELP US CELEBRATE PEOPLE WHO ARE INSPIRING & EMPOWERING OTHERS!

Know Your Rights

AWARENESS

Hope

Guide

LEARN TO BE INDEPENDENT BROUGHT TO YOU BY

ON YOUR OWN Learn how to Self-Advocate

/

CHOOSING THERAPIES Find the Right Match

NC JWCLE STRONG WOMEN

POWERFUL VOICES



2020-21 Edition

Departments

ON THE COVER Photos by Kim Stahnke Photography

AYESHA ABDULLAH AND SON, MUTAZZ LEWIS Ayesha is the founder of The Therapeutic School House

SARAH RINTAMAKI, executive director, Connecting for Kids

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AMY CLAWSON AND HER SON, TIMMY CLAWSON Amy is the Northern Ohio Family Specialist for Ohio Family to Family Health Information Center

DOUG BLECHER, founder, Autism Personal Coach

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Features

FIND THE RIGHT THERAPY How to navigate the different therapies available.

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ADVOCATE, EDUCATE, SUPPORT

We highlight people who are empowering and inspiring others in the community.

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STAYING VIRTUALLY CONNECTED

30 websites, apps and digital resources for children and adults with special needs.

PLAN NOW FOR FUTURE TRAVEL

Whether it’s fun in the sun, a day trip to a local attraction or time in an RV, start making plans.

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DIRECTORY

Find local resources for families.

EXECUTIVE DIRECTOR AND PUBLISHER LETTERS 04 Celebrating advocacy and this sixth annual publication. WORTH NOTING 06 Spanish-speaking Autism clinic, special education rights resources and The Lois J. and Larry Davis Family Endowment Fund. PEOPLE TO KNOW 38 Meet individuals, organizations and companies that strive to provide support for those with special needs. ASK NESSA 50 Parents’ rights as their child’s advocates at school. THERAPIES 10 10 Commonly-used speech therapy terms. 11 Art therapy offers creativity, self-expression. 16 Answering common questions about ABA therapy. EDUCATION 14 Transitioning back to school. 17 The ins and outs of alternate setting education. 18 Tips to help your child get organized for school. 20 Blended learning in today’s classroom. ADVOCACY 29 Advice for empowering self-advocacy. 30 Champion your rights to equal access and opportunity. 32 Becoming a strong disability self-advocate. 35 Advocacy is a team sport. 36 The importance of relationship-building FAMILY MATTERS 25 Building skills and discovering work. 28 Early childhood mental health. 34 Advocating for individuals with special needs.

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Executive Director's Note CELEBRATING ADVOCACY

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argaret Mead once said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” That’s something NCJW/CLE has always believed. Our mission is to improve the lives of women, children and families. We’ve done that by searching for holes in community safety nets — and then rallying together to address and draw attention to these issues. Our advocacy with the special needs community spans decades. In the 1970s, NCJW/CLE became aware of how hard it was for those with disabilities to get around. There were no laws then about access. Buildings didn’t have to have ramps or elevators or accessible bathrooms. And there was no way of knowing whether the building to which you were going had accomodations for those with special needs. So, a group of NCJW/CLE volunteers spent three years researching and mapping out buildings and centers in Cleveland. In 1980, NCJW/CLE published the first “Access Guide to Cleveland for the Disabled and Elderly.” We followed up soon after with a second volume, well before the federal American Disabilities Act passed. Neither event happened by chance, but rather through advocacy efforts from organizations like ours that spoke up for equal rights. For the next few decades, we have continued to advocate for the rights and needs of the special needs community. So, it is not by chance that this issue of LiveSpecial.com focuses on advocacy. It is in keeping with our mission, the times and the spirit of American democracy. When equal rights are in jeopardy, they must be called out, committed to and advocated for — not just by those affected, but by their friends, their associates and their fellow citizens. Advocating means showing up — often and consistently — to lend voices, so that voice by voice the cause gains the power needed to make a difference. That’s how change happens. I hope you enjoy the articles in this issue that encourage advocacy and its results. Please check out the website LiveSpecial.com as well as our Facebook page @LiveSpecialNEO.

Mindi Axner

Publisher's Note

livespecial.com ncjwcleveland.org PRESIDENT Michele Kaminsky president@ncjwcleveland.org EXECUTIVE DIRECTOR Mindi Axner 216-378-2204 ext. 103 maxner@ncjwcleveland.org LIVESPECIAL COORDINATOR Wendy Spitz 216-378-2204 wendy@livespecial.com LIVESPECIAL ADVISORS Jennifer Boroff Elaine Eisner Cindy Glazer Laura Kuntz Nessa Siegel

PUBLISHER Brad Mitchell

MANAGING EDITOR Denise Koeth

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e are delighted to bring this sixth edition of LiveSpecial.com magazine to you. Working together with the talented team at the NCJW/CLE to produce this annual magazine is a passion project for all of us. And with your input and support over the years, the magazine continues to sharpen its focus and gain fans and followers. LiveSpecial.com is for everyone. Whatever age or challenge you or your loved ones face, the magazine is designed to provide in-depth and helpful content and resources. We hope you are drawn to the engaging stories of individuals and families with special needs and make connections within the Northeast Ohio community. Helping families achieve better outcomes through the information and connections that we provide is the goal of our publication. Northeast Ohio Parent and Northeast Ohio Boomer & Beyond magazines are proud to partner with LiveSpecial.com to continue showcasing Greater Cleveland as a supportive region to those with special needs.

Brad Mitchell livespecial.com 2020-21

26055 Emery Road Warrensville Heights, OH 44128

EDITOR Angela Gartner

LIVESPECIAL̛S 6th EDITION

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A PROJEC T OF

ART DIRECTOR Laura Chadwick CONTRIBUTORS Nessa G. Siegel, Lindsey Geiss, Cindy Glazer, Heather Tunstall LiveSpecial Resource Guide is published by Northeast Ohio Parent Magazine and Mitchell Media LLC PO Box 1088 Hudson, OH 44236 330-822-4011​ Copyright 2020 by NCJW/Cleveland and Northeast Ohio Parent


Check out THE MISSION LiveSpecial.com is a free and comprehensive Northeast Ohio online, go-to resource for all things required to support individuals with special needs and their families. LiveSpecial.com 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.

our Video Gallery

Visit Facebook.com/ LiveSpecialNEO for more updates and resources!

· CLEANER WAY TO SEARCH · MORE MODERN LOOK AND FEEL · U SER-FRIENDLY EXPERIENCE COMPATIBLE WITH ALL DEVICES

WE ARE COMMITTED TO BEING NORTHEAST OHIO’S GO-TO ONLINE RESOURCE TO SUPPORT INDIVIDUALS WITH SPECIAL NEEDS AND THEIR FAMILIES.

Email GetAnswers@LiveSpecial.com to receive firsthand information and updates.

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Worth Noting

Autism Clinic Meets Spanish-Speaking Community Demand utism’s prevalence in embraces the language and the U.S. continues to cultural needs of Hispanic patients increase. An estimated and families. one in 54 children have Hispanic MAAC is part of the an autism spectrum disorder (ASD) MetroHealth Autism Assessment diagnosis, up nearly 10 percent Clinic (MAAC). Spanish-speaking from the Centers for Disease families (mono-/bi-lingual or Control and Prevention’s (CDC) Spanish is first language) are previous biennial report. directed to Hispanic MAAC. “My suspicion is prevalence MAAC routes families into is going up because [medical four breakdowns, according to professionals] are catching it at both A young boy studies a miniature globe held Armstrong-Brine: younger children ends — through earlier screenings, by Melissa Armstrong-Brine during an autism MAAC (6 and below), older assessment session at MAAC as well as identifying those children MAAC (6 up to age who may have been missed the 21), adult MAAC (over 21) first time around,” says Melissa and Hispanic MAAC. WHAT EXACTLY IS AUTISM? Armstrong-Brine, Ph.D., “Our Spanish-speaking According to the CDC, one in six children who director of the MetroHealth are ages 3 to 17 years old have developmental providers represent multiple Autism Assessment Clinic disabilities — conditions that affect how children dialects and cultures, so we are play, learn, speak, act or move. The CDC describes and clinical psychologist in not making assumptions about autism spectrum disorder (ASD) in this way: the Division of Child and cultures and beliefs or how a ASD is a developmental disability that can cause Adolescent Psychiatry. diagnosis may be accepted,” significant social, communication and behavioral For the first time, the CDC Armstrong-Brine says. challenges. There often is nothing about how people data shows no difference in Since its inception in with ASD look that sets them apart from other prevalence rates for white and people, but people with ASD may communicate, 2013, MAAC has diagnosed black children. However, the interact, behave and learn in ways that are different more than 1,000 people from most other people. The learning, thinking and number of Hispanic children with autism, providing problem-solving abilities of people with ASD can identified with ASD is still personalized treatment range from gifted to severely challenged. Some lower by comparison. ASD plans to help individuals and people with ASD need a lot of help in their daily also is identified later among families move forward. The lives; others need less. black and Hispanic children Early assessment and intervention are keys to clinic uses a multidisciplinary compared to white children. helping children achieve their full potential. approach — including child According to the CDC’s psychologists, behavioral summary, “previous studies pediatricians, clinical social have shown that stigma, workers and speech-language Columbus, Lorain and Toledo, lack of access to healthcare therapists — to diagnose schoolaccording to ohio.gov. services, and non-English primary aged children and adolescents. The median income of Hispanic language are potential barriers However, the clinic serves all ages: Ohioans is lower than that of all to identification of children with younger children (24 months and Ohioans, with 24 percent living below ASD, especially among Hispanic older), older children and adults. the poverty line, as reported in the children.” While racial and ethnic In 2018 alone, the clinic served 772 U.S. Census Bureau’s 2018 American gaps in the identification of ASD children, more than half of whom Community Survey. are closing, more progress is were age 5 and younger. The MetroHealth System, needed to increase awareness and “We are not only looking for Cuyahoga County’s public health improve access to screening and autism,” Armstrong-Brine says. system, recognizes an urgent intervention services. “We see a lot of anxiety, OCD need for autism services in the Ohio’s Hispanic population has (obsessive-compulsive disorder), Spanish-speaking community. Too doubled since 2000 and more than ADHD (attention deficit-hyperactivity many families struggle without a tripled since 1980, with one out of disorder), language disorders and diagnosis or care. MetroHealth every three Hispanic Ohioans living intellectual disability. With adults, Autism Assessment Clinic (MAAC) in one of four cities: Cleveland, we have also seen depression or in Cleveland accommodates and

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PHOT0 SUBMITTED BY METROHEALTH

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By Lindsey Geiss


emerging bipolar disorder.” The MAAC uses the DSM-V Autism Diagnosis Criteria. If an autism diagnosis is given, severity (level 1, 2 or 3) is indicated, and presence of intellectual and/or language impairment (with or without) also are specified. Nonverbal testing measures are included. Recommendations for interventions may include speech therapy, occupational therapy, ABA (applied behavioral analysis) therapy or other behavioral services, and recommendations for school and/or medical follow-up, including genetic testing. Once feedback on the evaluation is presented, families have the opportunity to meet with a social worker to identify and contact service providers, such as ABA therapists, to determine the best course of action. Assistance also is provided to work through any barriers to accessing special education services, such as the process for obtaining a birth certificate. While Cleveland-area residents comprise 40 percent of MAAC’s patient base, the majority come from outside the immediate area, especially the southern suburbs. The Spanish-speaking clinic has received referrals from across the state, as far as Dayton. However, transportation has been a barrier. “From the beginning, we try to make evaluations as efficient as possible,” Armstrong-Brine says. “While some clinics do multiple evaluations broken up over several days, our appointments are streamlined into an hour-long, oneon-one parent interview followed by a half-day inter-disciplinary session with a speech and language pathologist, developmental pediatrician and psychologist. Instead of completing a lengthy packet on their own, parents are presented information verbally, inperson with assistance from translators and social workers, as needed. “This approach keeps time off work and out of school to a minimum while also accommodating families with lower literacy rates who may speak English but not read it well.” Visit metrohealth.org/pediatrics/ autism-assessment-clinic

MAKING A DIFFERENCE

Lois Davis helps those in need in memory of her husband, Larry.

L

ois Davis, of and organizations to donate Beachwood, wants in her family’s name. to make sure Davis has donated to the her husband, Larry, is Ronald McDonald House remembered. Cleveland as an annual Larry Davis, who room sponsor, providing passed away at 75 years funding for guest rooms old, was the inspiration where families can stay at for The Lois J. and no cost while their child is Larry Davis Family receiving medical treatment Larry and Lois Davis Photo courtesy of Lois Davis Endowment Fund, at Cleveland area hospitals. which provides support She also has supported for a variety of projects throughout the the Jewish Family Service Association of Northeast Ohio community. Cleveland’s The Hebrew Shelter Home, “I couldn’t do it without Larry,” a place for women and children escaping Davis says about the endowment fund. domestic violence or homelessness. “Larry deserves to be remembered and “(Opportunities to give) just come up I want to honor his memory. People and I can make a difference in a person’s recognize the name; if you don’t use life,” Davis says, which is why she wanted the name, no one will follow you (in to support LiveSpecial.com. “There are donating to others).” so many people that could benefit from Davis says her son, Jeffrey, was the this magazine and the website, I wanted first one to point out that she could to support this project in some way. I make a difference in the community. know how valuable LiveSpecial.com is Davis went on to choose projects for our community.”

SPECIAL EDUCATION RIGHTS Looking to learn more about special education rights? Here are some helpful links. Also, see page 50, “Ask Nessa,” for more information or visit LiveSpecial.com for additional special education topics. • WRIGHTS LAW wrightslaw.com • A GUIDE TO PARENTS’ RIGHTS IN SPECIAL EDUCATION education.ohio.gov/topics/ special-education/a-guide-to-parent-rights-in-special-education • OHIO DEPARTMENT OF EDUCATION, SPECIAL EDUCATION education.ohio.gov/topics/special-education • U.S. DEPARTMENT OF EDUCATION, THE OFFICE OF SPECIAL EDUCATION PROGRAMS (OSEP) 2.ed.gov/about/offices/list/osers/osep/index.html • THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT education.ohio.gov/topics/special-education/special-educationdata-and-funding/special-education-part-b-allocations/ updated-Individuals-with-disabilities-education-ac • OHIO ADMINISTRATIVE CODE (OAC) education.ohio.gov/about/ohio-administrative-code-oac-rule-comments

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FINDING a Therapist By Sara Macho Hill

Hearing that your child has a developmental disability or delay and learning that he or she may struggle reaching milestones and accomplishing day-to-day functional tasks can be emotionally devastating for a parent. What comes next can be just as overwhelming: seeking out and choosing the best therapist.

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herapy, after all, is not “one size fits all” and every child and family’s journeys are different. One of the most important things to remember is that your child is not defined by his or her diagnosis and this diagnosis is second to who they are, says Jaclynn Bosley, owner and executive clinical director of Thrive Early Learning Center in Warrensville Heights. One of the first things she tells parents is to “take a breath” and turn to research, not opinion. She gives parents a literal roadmap for their next action steps.

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“Your child is still your child,” she says. “You’re hearing things your child cannot do and it is so overwhelming, and you can feel disheartened. It’s vital to remember that your child is the exact same child they were six months ago, and you love them the same way.” However, diagnosis does dictate the sort of therapies your child receives. Research shows that early intervention is key. “We have a window of opportunity in the first 18 months of infant development where the brain has more plasticity and we can have a greater ability to influence change,”

says Madalynn Wendland, associate clinical professor in the doctorate of physical therapy program at Cleveland State University. “We can’t change the diagnosis itself, but early targeted interventions provide the infant with the opportunity to learn adaptive strategies.” At any age, it's never too late to find therapies for your child, whether they have a diagnosis or not. Multi-faceted therapies — those that create motor, sensory, cognitive and social development — are ideal and give children a more robust experience, Wendland notes. When deciding on a therapist and therapy style, keep in mind that you know your child best and rely on the medical providers who provided the diagnosis for guidance.


“You’re the expert on your child and you know what they like, what they don’t like, what they can tolerate and what they can’t tolerate,” Bosley says. “Try to physically see the entire space or do a virtual meeting to see the space. Speak with the clinician and ask about their expertise, their background and what the therapy environment is like. Keep physical aspects in mind — the lay of the land and how it is designed. Environment is incredibly important.” Therapy can be costly for families and unfortunately, not every therapy provider accepts insurance. Experts recommend families speak with their insurance companies to understand what types of therapies are covered. There are many resources available to families as well, including Ohio’s Help Me Grow support program, the Ohio Autism Scholarship, local support groups specific to diagnosis, and assessments performed by public schools. Other factors to keep in mind include therapy location and proximity to home/work/school, therapy type (in-home/outpatient/ virtual), appointment availability and frequency, the provider’s expertise/ specialties, and the interventions that are needed. It also is important to understand how sessions will be conducted and how goal setting will be tracked. A more complex diagnosis will require a collaborative team of therapists in communication with one another. The “human aspect” is another factor to keep in mind, experts note, as well as emotional support that helps parents navigate their emotions. “Find a provider who recognizes that your child is a person first and is not just being treated symptomatically,” Bosley says. “When we discuss the end goal, I usually hear parents tell me, ‘I want my child to be able to go to school,’ and my response is that our goal here is for each individual to meet their maximum potential and be their best self. I want this child to be the best version of himself or herself.”

THERAPIES DEFINED Here are some therapies that are common, however, diagnosis does dictate the sort of therapies your child might need. WHAT IS OCCUPATIONAL THERAPY? Occupational therapy works to improve fine and gross motor skills and can help children with self-regulation and sensory processing. Occupational therapy, which assists people of all ages, is tailored to an individual’s specific needs and helps the patient do the things they want and need to do. These “occupations” can include tasks like getting dressed, using a pencil and scissors, throwing and catching a ball, and brushing teeth and combing hair. Occupational therapy works to build specific skills that are weak. WHAT IS PHYSICAL THERAPY? Coined “movement experts,” physical therapists develop treatment plans to improve an individual’s ability to move, reduce and/or manage pain, restore function and prevent disability. They can help their patients maintain or regain independence, lead active lives and achieve fitness goals. WHAT IS SPEECH-LANGUAGE THERAPY? A speech-language pathologist (SLP) works with individuals of all ages to treat communication issues such as how to say sounds and put sounds together (articulation), how to use words to express feelings and thoughts, and how to use and understand language in social settings like rule following in the classroom and taking turns amongst peers. A SLP also treats issues with chewing and swallowing foods and liquids. WHAT IS APPLIED BEHAVIOR ANALYSIS? This type of therapy focuses on improving specific behaviors and is a common intervention for individuals with autism. ABA therapy programs can help increase language and communication skills, improve attention, focus, memory and academics, and decrease problem behaviors. Treatment goals are written based on the age and ability level of the individual and can include many skill areas such as social skills, self-care, motor skills and communication and language skills. Sources: understood.org, American Physical Therapy Association, American Speech-Language-Hearing Association, autismspeaks.org

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Therapies

10 Commonly-Used Speech Therapy Terms Learn some general terms used by speech language pathologists that will help you during your therapy visit. and alternative communication includes all forms of communication and expression. AAC therapy may supplement verbal communication or be the primary form of communication. It may incorporate the use of pictures, gestures, voice-output devices or computers to help individuals express their thoughts effectively.

2. C hildhood apraxia of speech is a motor speech disorder that impacts a child’s speech clarity. Children with apraxia of speech have difficulty planning and producing refined movements of the jaw, lips and tongue needed for clear speech.

3. R eceptive language skills involve

attention, listening and processing the message to gain information.

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4. E xpressive language is a broad

term that describes how a person communicates their wants and needs. As both verbal and nonverbal communication, expressive language skills include: facial expressions, gestures, intentionality, vocabulary and semantics.

5. O ral motor skills are used in therapy

sessions to build oral motor strength for speech sound development and feeding skills. Therapy in this area typically encompasses oral awareness, oral stretches and oral exercises to improve strength and speed of movements needed for speech.

6. A rticulation or speech production

is how clearly a speech sound is produced. Children or adults may have errors in speech for one specific sound, or a group of sound classes. For example, a child may say “tat” for “cat.”

7. Feeding and swallowing therapy

focuses on the ability to bring food to the mouth, chew and swallow safely and efficiently.

8. D isorders of fluency are speech

disorders that impact speech fluidity. Fluency disorders, such as stuttering, are characterized by sound or word repetitions, pauses, or drawn out syllables, words and phrases. In more severe cases, groping or nonverbal symptoms (e.g. ticks, silent blocks) also are present.

9. D ysarthria is another motor speech

disorder that results from neuro-motor impairment to the muscles of speech production.

10. Voice disorders are considered to

be an abnormality of one or more of the three characteristics of voice: pitch (intonation), intensity (loudness), and quality (resonance).

PHOT0 COURTESY OF CLEVELAND HEARING AND SPEECH CENTER

1. A ugmentative


ART THERAPY

Offers Fun, Creativity and Self-Expression By Ginny McCabe

Art is not only fun, creative and inspiring for many, but the benefits of expression through art are far-reaching across the Cleveland community. For families and individuals living with special needs, art therapies can improve communication and concentration, as well as increase self-esteem and confidence. BENEFITS OF ART THERAPY People of all ages and abilities can benefit from art therapy programs, including people with Down syndrome and autism spectrum disorder, and those with physical or neurological disabilities, including cerebral palsy or a traumatic brain injury. Individuals with special needs are integrated into classes with those of all abilities. “Art therapy is a mental health profession that uses art to provide support for people that are coping with emotional needs, physical needs or cognitive needs, so we work with people in a wide variety of ways,” says Cheryl Pete, ATS, clinical director at Art Therapy Studio in Cleveland. According to Pete, who works alongside Executive Director Michelle Epps at Art Therapy Studio, “Art therapy can help people express themselves, cope with difficult situations — and there’s also a physical component, so if people have trouble with fine motor skills, or even gross motor movements, art therapy is a way they can build those skills up, and still express themselves.” Art therapy also is a great means of self-expression and storytelling, Pete says, and it has a positive impact on selfesteem and confidence.

Beck Center for the Arts in Lakewood. Photo by Wetzler Photography. EVERYBODY IS AN ARTIST If an artist has a specific need, there are adaptive tools art therapists can use to help, like using a special art board, or raising or lowering a table to accommodate a wheelchair. Artists in the group also help each other, so if someone has mobility issues and they need paint, one of their peers will go get the paint for them or wash their brushes. There are a wide variety of students, including those who engage in art therapy while they recover from a stroke, individuals looking for socialization, and those who are disabled with traumatic brain injuries. “There is a lot of focus in recent years on providing opportunities for people with disabilities to connect with their community,” Pete says. “It happens really organically here in our space because you have somebody that may be recovering from a stroke sitting next to

somebody that might have cerebral palsy, sitting next to somebody who’s retired and wants to have something social to do, sitting next to a person with a traumatic brain injury. So, we have this diverse group of people — what they share is art, and they build these really beautiful, close-knit relationships.” She says it comes down to the fact that there are no stigmas or labels, and “everybody is an artist.” In an effort to introduce the benefits of art therapy services to the community as a whole, Art Therapy Studio will use its Facebook page — facebook.com/ arttherapystudio — to provide weekly sessions where individuals and families can use household items to perform art therapy “tasks.” It also allows participants an opportunity to share their work. Tammy Shella, Ph.D., ATR-BC, art therapy manager for Arts & Medicine Institute at Cleveland

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REGIONAL PROGRAMS ART THERAPY STUDIO

Art Therapy Studio offers a wide range of classes, from those that focus on a specific media like painting and drawing to clay molding or fiber arts, to an “Open Studio” format, where artists can choose the mediums in which they work. For more information, go to arttherapystudio.org.

BECK CENTER FOR THE ARTS

Beck Center for the Arts in Lakewood is another innovator when it comes to creative arts therapies, private lessons and adaptive individual lessons in music, art, dance and theater performance. For more information, go to beckcenter.org.

CLEVELAND CLINIC ARTS & MEDICINE INSTITUTE

Students explore a variety of art projects using a variety of art materials including watercolor, acrylic painting, clay or molding, jewelry and more. Projects often are adapted based on the needs of each patient. For more information, go to my.clevelandclinic.org.

DANCING WHEELS COMPANY & SCHOOL

Dancing Wheels believes that if dance is an expression of the human spirit, it is best expressed by people of all abilities. At its school in Cleveland, students with and without disabilities come to learn a wide variety of different movements and dance classes, like yoga and tap. For more information, go to dancingwheels.org.

FINE ARTS ASSOCIATION

Top: A young patient doing art. Photo submitted by Cleveland Clinic. Bottom: Photo submitted by Art Therapy Studio.

The Fine Arts Association offers arts education classes, private lessons and more. Arts experiences are inclusive of individuals of all ages, backgrounds and ability levels. Fine Arts Association provides arts education in a family-centered, safe, creative environment where students can experience the arts in a personal way. For more information, go to fineartsassociation.org.

INSPIRATION DANCE ACADEMY

Benefits for participants of the program include exercise and encouragement in a positive environment. Dancers also have an opportunity to socialize with their peers and build self-esteem. For more information, go to inspirationsdance.org.

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Clinic, says those with special needs are offered individualized art therapy in the same manner that individuals of all abilities receive therapy. “People with special needs are not separated out from the general patient population. They are going to come in just like everybody else,” she says. “We don’t think of it as special needs, we think of it as, ‘What does this person need?’” If there are artists who have some difficulty — where they might need to have tools adapted, or to use very specific media that is easier for them to work with or that would help them to best accomplish their goals — those things would be considered as part of that person’s needs assessment. “Basically, our definition of art therapy is the creation of art with an art therapist to assist in emotional and physical healing and growth,” Shella says. “It fits the general art therapy definition, but it’s much more specific for the needs of medical patients.” Medical patients have a lot of things in common in terms of their emotional needs, such as high levels of anxiety, because they are taken out of their normal life and normal routine, and thrown off by an unexpected diagnosis, she says, such as cancer, a transplant, or anything you can imagine that would land someone in the hospital, even for a short period of time. “Nobody wants to be in the hospital, so we help to alleviate some of the anxiety and fears that come along with that,” Shella says. According to Shella, about 62 percent of adults have said art therapy helped reduce their anxiety, and another 56 percent have said it improved their mood. “Patients are sometimes surprised at what the art brings out in them, and they weren’t expecting to see all the symbolic ways that their stress, anxieties and fears were being expressed. For other patients, it helps them build a skill set they never knew or realized they had, like silk painting,” Shella says. When these individuals build a new skill through artmaking, it can help them build their self-esteem again, and it makes them feel more whole, she says. MAKING DANCE ACCESSIBLE TO ALL Mary Verdi-Fletcher, president and founding artistic director of Dancing Wheels Company & School in Cleveland, says dance is physically, mentally and emotionally therapeutic just by the nature of the movement and music. “We have several components to our organization. We have a professional company that performs all over the world. We do concert performances, guest appearances, workshops and master classes on the road, so we can do a wide variety of performances and performance styles,” says Verdi-Fletcher. “Then there’s our school, based in Cleveland, where students come with and without disabilities. They all take class together.” As one of the first and most accomplished professional wheelchair dancers, Verdi-Fletcher has been a pioneering force in the development and success of physically integrated dance worldwide for four decades. In 2014, she was awarded the “Governor’s Award for Arts Education in Ohio” for major contributions to dance in Ohio.


“I’m a person with a disability myself, and when I first started Dancing Wheels, I saw that there weren’t very many opportunities for those with disabilities to be a part of the dance community,” Verdi-Fletcher says. “I have always been raised in the idea of being inclusive, so to include nondisabled people in the world of disability as well, I thought that was important.” “We became much more inclusive as the years went on in our age, ethnicity and gender, so it really involves all people of all abilities,” she says. “It provides a lot more equality across the board.”

adaptive lessons via telehealth,” says Ed Gallagher, director of education at Beck Center for the Arts. “People have the option to participate virtually, or in person.” Gallagher says participants can engage with a creative arts therapist in sessions remotely using a HIPAA-compliant level of Zoom. And, for those who don’t thrive in remote access sessions, there will be in-person offerings available. “That’s probably one of the biggest challenges we’ve had, and we’ve seen it with little kids without disabilities and with disabilities, that after a short period of time they can only look at the screen for so long. So, we’re adapting to provide in-person VIRTUAL OR TELEHEALTH AND sessions for those that have a real hard IN-PERSON OPPORTUNITIES challenge with the distance sessions,” says Beck Center for the Arts in Lakewood, in a Gallagher. collaboration with Cuyahoga County Board Like Beck Center for the Arts’ of Developmental Disabilities, has been approach, as things start to open back Photo submitted by Dancing Wheels widely recognized for its annual “Razzle up, many arts centers across the region Company & School. Dazzle” stage production, which features will offer participants both online and inthose in the Creative Arts Therapies program. In 2021, Beck person opportunities. Center will celebrate the 20th anniversary of “Razzle Dazzle.” “Overall, it has been very successful. As one can imagine, Other programs created for those with special needs include there have been people that didn’t miss a beat, some that sensory-friendly performances that are staged for audience took a little bit of time, and those that just weren’t able members with disabilities. to make the switch for various reasons, but overall it has “From the Creative Arts Therapies end of things...we're worked well, and people all came to it in their own time,” offering music therapy, arts therapy, adaptive dance and Gallagher says.

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Education

Tra nsi tio nin g BACK TO SCHOOL

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andemic or no pandemic, August is when parents need to help their kids transition from summer to back to school. Current circumstances, however, make this task more difficult than ever, especially for children with special needs. Nicki Salfer, MA, MS, BCBA, is the founder of Tree of Knowledge Learning Academy (TOKLA), which has locations in Cleveland Heights, Ohio; Miami, Florida; and Lakewood, New Jersey. Salfer and her team provide a range of services to students in a variety of settings, from therapeutic and behavioral supports to customized academic learning, at home, in hospitals and in schools. For TOKLA students and their support professionals, online learning isn’t new. Salfer has integrated online and blended learning programs into students’ academic and behavioral plans for more than 20 years. COVID-19 has thrown us all for a loop, but virtual learning options can help reinstate some stability. “A much greater concern is the mental health of children,” Salfer says. “Adults have to stay calm. We are going to need to be flexible and make the best decisions we can with the current data. We also don’t want to judge what anyone else is doing.” She advises parents who have children with special needs to contact their school district about the special needs services and offerings, including whether supports will be implemented remotely or in-person.

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Salfer also has some easy tips to help parents prepare their kids for the upcoming school year:

1. SCHEDULE: It’s important for kids to get back

into a routine by having a structured day, even if they are not yet returning to a brick-and-mortar school building. Salfer recommends having a consistent daily wake-up time and bedtime to help kids acclimate to a regular schedule.

2. TIME AWAY FROM TECHNOLOGY: For kids,

summer 2020 wasn’t filled with the typical adventures of camp, trips and the like. Instead, many children were using their electronic devices far more than usual. And furthermore, many schools may resume with online-only platforms. Salfer recommends two crucial tips: Before school begins, try to keep kids off the computer and phones for the present, Salfer says. And have them participate in activities such as reading books, playing board games, and engaging in socially distant in-person/hands-on games with others, which has the added benefit of preparing kids to develop strong social skills.

3. GET MOVING AND EAT HEALTHFULLY: If you

haven’t already, help kids establish a regular exercise routine and eat healthier foods throughout the day. “When away from home, find places for them to walk or participate in aerobic activities, such as swimming,” Salfer says. “Now is also the time to cut back on sugar.” Contact TOKLA today to find out more about how Nicki Salfer and her team can help your child succeed.



3 Common Questions About ABA Therapy

Therapies

25221 Miles Rd Warrenville Heights 37701 Colorado Ave Avon

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COMMON QUESTIONS ABOUT ABA AND SUPPORT FOR CHILDREN WITH ASD

How do I know if my child needs ABA? Studies show that using ABA methods during intensive 1:1 sessions, for 25+ hours per week for 1-3 years in duration has yielded the most successful outcomes in communication and social skills for children with ASD. If your child is not receiving this type of instruction, a good place to start is to get an evaluation from a behavior analyst in order to determine your child’s needs. Additionally, most children who receive a diagnosis of autism are already receiving a specialized therapy, such as occupational or speechlanguage therapy. Talk to your therapist to get their insight.

How do I get an evaluation? First, find out if your medical insurance covers ABA with an autism diagnosis. Next, find a provider in your area.

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What does an ABA session look like? This depends on the child and what type of ABA is used. For example, at Galvin Therapy, the autism program is for children ages 3-6. This is a 25-hour-per-week group program, pairing children with staff, using the Early Start Denver Model (ESDM) as the guiding curriculum, which is based in Pivotal Response Training and uses play and joint activities to help children advance in all developmental areas. Also offered is a 1:1 ABA treatment that focuses on individualized goals to increase communication, focus and social skills, and decrease problem behaviors.

216-514-1600

PHOT0 COURTESY OF GALVIN THERAPY CNETER

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hat we know from research is that early intervention is a child’s best chance of success. From birth to age 6, a child’s brain is a sponge absorbing every experience. For a child with autism spectrum disorder (ASD), specific instruction and strategies are needed to make this happen. This might be different from other developmental methods used in early childhood. One such method is applied behavior analysis (ABA), a widely-researched method that is considered a gold standard in the teaching of children with ASD. ABA is a science focused on using strategies to change behavior. Grounded in the principles of learning, behavior analysts (BCBAs) assess the functional relationship between the behavior, the person and the environment. For many children with autism, intensive and long-term ABA therapy can provide improved outcomes in language, social skills and cognitive skills, along with other gains.


Education

The Ins and Outs of Alternate Setting Education By Carrie Cercone, director of day treatment at Education Alternatives Elyria

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any parents are curious about alternate setting programs or “alternative schools” for children struggling with social-emotional issues. Many have questions or uncertainties about reaching out to a program or may be unsure whether their child qualifies. Alternative schools are designed to provide more intensive special education services for specific students who need that extra support. These students typically are on IEPs for behavioral challenges. In most cases, they are struggling in a public school setting with anything from staying on task to showing safe behaviors, completing academics, following directions and more. The alternate setting is a unique benefit to these students. The main benefit is the social-emotional behavior piece, which they do not receive as consistently or for as many hours of their school day in their public school. While they learn offsite, all students are still enrolled in their public school. High school students receive diplomas

from their public school. Alternative schools are providing special education services and mental health services for students in the same way, but the only difference is students are on a different campus. Alternate setting programs provide special education services and, like public schools, will have specific plans in place to keep students safe during COVID-19. These may include scheduling new student tours after hours, mandating face coverings, social distancing, and distance learning where appropriate. There typically are two ways to enroll a child. The most common way is a school district placement. The other way is a parent/guardian placement through the Jon Peterson scholarship. Students who qualify need a preexisting IEP. Most families start by scheduling a meeting with the IEP team to discuss the services and accommodations that they’ve already tried and the concern that the student still isn’t succeeding the way they

should. The intervention specialist will reach out to the supervisor or director to see what they can do differently or if an alternate setting would be most appropriate. Alternatively, parents can apply for the Jon Peterson scholarship if they’ve requested a separate facility and they haven’t gotten that outcome through the district. Jon Peterson is offered through the state of Ohio and applied through the Ohio Department of Education (ODE). As a first step, anyone considering a Jon Peterson scholarship should meet with the program they are considering and discuss the details of placement. Based on that meeting, if an application is appropriate, the next step is to submit. To apply, parents can go to the ODE website, education.ohio.gov, and apply for the scholarship. Once the scholarship is awarded, the student can go to any school that is a provider. As building directors, Education Alternatives in Elyria is here to help families navigate this process. For more information, visit easchools.org/contact.

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Education

10

BACK-TO-SCHOOL TIPS Help Your Child Get Organized — No Matter What This School Year Looks Like

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Insist that your child use a daily planner. The planner should go to every class with your child with the purpose being to write down each assignment and due date. You and your child should review the planner each evening. Creating and checking off lists may sound like an easy thing to do, but many kids struggle with this task that often requires positive and continual reinforcement. If you

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Help your child prioritize homework. “There’s so much to do and I don’t know where to start.” We’ve all experienced the tears that go along with this scene. Sit with your child and help them divide homework into manageable chunks. If it’s a long-term project, help them map out the various stages and assign

dates to each stage. Make sure they understand the requirements of every assignment and reach out to the teacher if anything is unclear to you.

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Help your child get organized. Begin by creating a dedicated space for them to do their school work. Also, label books and folders by colorcoding subjects. Devise a system with your child so he or she knows where to put new homework and completed homework. If your child is completing l

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find that your child is not writing in the planner in class, ask the teacher if they would be willing to check it each day. l

t’s more important than ever to make sure your child is ready for school — regardless of the format. Whether learning from home, learning from a school building, or some combination of the two, helping kids get and stay organized is key to a successful and productive year.


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Encourage good study skills. Some kids work really well right after school, while others need downtime to calm or recharge their bodies and minds before tackling more work. Make sure your child is not hungry when working and be firm about removing any distractions. Allow a reasonable amount of breaks to keep down their stress level. The place at which your child decides to work should be a comfortable space, but his or her bed should be reserved for sleep, which is essential for good school performance.

Hold your child accountable. Kids don’t need to be perfect, but they do need to understand responsibility and be held accountable for their actions (or lack of action). If you know your child has a big project due, make a clear agreement with them at the beginning. Let your child know what privilege will be taken away if the project isn’t completed on time. Again, consider rewarding him or her for a job well done.

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Stay in touch with your child’s teachers. Attend parentteacher conferences and always raise questions or concerns about your

If you have any questions about this article or about executive functioning skills for children with learning differences, visit juliebilliartschools.org.

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Make time to talk about school with your child. Let them know everything they do at school is important to you. By keeping your child engaged and talking about school, you’ll have a better understanding of what challenges they may be experiencing. l

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child via email or phone calls. The more informed you are about your child’s performance or behavior at school, the better able you’ll be to help them meet teachers’ expectations.

Encourage help-seeking behavior. It’s not uncommon for students to avoid asking teachers for help. Teachers often are willing to work with students before and after school or during their planning periods to help their students understand the material or improve their skills. Schools also have intervention specialists to support students who do not have formal learning plans. Older peer tutors also may be available at your child’s school. l

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Reward your child’s effort. Consider a positive reward system for young kids. This doesn’t have to be expensive or even have any monetary value at all. Perhaps your child could get a small sticker on his or her folder for completing his or her homework. Or maybe they could play a video game for a certain amount of time on a certain day if all assignments are handed in on time that week.

Track your child’s progress. Most schools today use some type of online parent portal that allows parents to keep track of their child’s grades between report cards. Because teachers don’t always hand back tests or assignments, there can be a disconnect for students who may not be getting feedback in a timely manner. Give your child praise for doing well and discuss things they could do to improve performance in the future. l

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assignments but not turning them in the next day, figure out some type of prompt they can use at school to serve as a reminder to hand in work.

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Education

Blended Learning in Today’s Classroom

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peech-language pathologist Christine Worthington serves as psi's speech therapy supervisor and Virtualpsi coordinator. Here she provides ways that blended learning is enhancing traditional classroom learning outcomes.

With the use of digital formats like prerecorded lessons, videos, small group sessions and interactive learning experiences, a blended learning approach affords students with the opportunity to learn, relearn, repeat and review content at their own pace and control when, how, and where learning occurs.

What is blended learning?

How does this approach benefit students with special needs?

Blended learning is an educational concept that combines traditional classroom teaching, technology, online teacher-student interaction, and digital media. This hybrid model is intended to enhance traditional learning outcomes while students engage in self-paced and customized online learning activities. Blended learning is considered to be a progressive approach to education. However, in reality, educators have been integrating blended learning elements into their classrooms for quite some time with the use of digital materials and internet resources. What types of blended learning can parents and students expect?

By integrating and connecting traditional face-to-face learning with digital technologies and resources, a blended learning environment emerges. Some types of blended learning styles may include, but are not limited to: rotation, flex, online labs, flipped classrooms, a la carte and enriched virtual experiences, to name a few. These learning styles utilize technology at varying levels, yet all combine opportunities for face-to-face and online instruction, guided practice, self-paced learning opportunities, fixed and flexible scheduling, and access to digital resources. What is the pace of blended learning?

Blended learning can occur at the student’s pace and accommodates the student’s need to review and relearn material. In a traditional classroom setting where the teacher provides information through a lecture-style format, students have only one opportunity to hear and process the information.

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Some of the major benefits of blended learning are self-paced instruction and differentiation of content material. For students with special learning needs, blended learning may be a perfect model. Students who learn differently or need a slower pace of learning can receive their instruction through varying modes, such as pre-recorded lessons, home-based experiments, videos or collaborative assignments. Content can be repeated and reviewed through different learning opportunities, thus reducing stress to keep the pace of their peers. Blended learning can offer more engaging and self-tailored learning experiences for students with different learning styles or needs, and also can benefit students who need a more accelerated pace of instruction. Opportunities encouraged through blended learning, such as collaboration, exploration and examination of learned material, enhance the learning experience for all students by expanding the instructional environment outside of the classroom. Furthermore, blended learning reduces the traditional lecture-style instruction seen in traditional teaching, which results in increased student engagement for all learning styles. How can blended learning be integrated into a classroom?

Integrating blended learning into a traditional classroom can be accomplished easily and effectively by taking what is already in the classroom and using technology to enhance and boost learning and collaboration. Teachers should first determine which

instructional model would work for their own teaching style, for the content being taught, and for the different learning styles and needs within the classroom. Additionally, using digital materials that are engaging, easily accessible, and have varying degrees of difficulty would enhance educational outcomes for all learners. For teachers new to integrating technology into their classrooms, using digital or online assessments, utilizing digital learning platforms for assignments and collaborative activities, and offering online office hours for more individualized guidance may be a good starting place. Today’s students are not new to technology and bringing digital resources to the learning experience is a natural progression in today’s classroom. Through blended learning, students are able to learn at their own pace and engage in a variety of learning styles, and then show their knowledge in ways that a traditional classroom format does not always offer. When paired with real-life experiences and learning opportunities, integrating digital technology to support traditional instructional material may be the ideal way to foster a lifetime love of learning. What strategies can be done at home between parents and students?

Instructional resources that enhance the learning process should include practical teaching strategies that occur in a student’s natural environment. When students learn in a stress-free, supportive environment, generalization of learned information occurs more readily. Parents can take an active role in their student’s learning by engaging in interactive assignments and participating in collaborative discussions and hands-on activities. Learning together and encouraging their child to demonstrate what they know can help parents see the depth of their understanding.


STAYING

VIRTUALLY CONNECTED

30 WEBSITES, APPS AND DIGITAL RESOURCES FOR CHILDREN AND ADULTS WITH SPECIAL NEEDS

From recreation, travel and books to executive functioning and learning, we’ve compiled a list of online resources to help you stay connected, engaged and inspired. By Lindsey Geiss

Recreation and Travel

1. INMOTION

beinmotion.org/at-home-videos InMotion is a nonprofit center dedicated to helping people manage their Parkinson’s, take charge of their well-being, and embrace the opportunities and challenges ahead. It is providing at-home exercise videos and other events. The center also provides in-person art, music programs and support groups. Also visit facebook.com/inmotionwellness.

2. BEYOND OUR BOUNDARIES VIRTUAL TOURS VACATION BOX bobvirtualtours.com

Beyond Our Boundaries, a recreation service for people with developmental disabilities, offers a ​Virtual Tours Vacation Box​that takes individuals on an interactive travel experience without leaving the comfort of their own homes. An affordable and educational way for people with disabilities to encounter a thrilling travel experience firsthand, the box includes an engaging 30-minute video hosted by a self-advocate, travel souvenirs and interactive materials to create discussion with a caregiver or family member.

3. KULTURECITY SENSORY INCLUSIVE APP kulturecity.org/sensory-inclusive

Find sensory-friendly venues near you. One in five individuals has sensory issues, with those on the autism spectrum being the biggest group. This free app aims to help 20 percent of the population in the U.S. by listing KultureCity Sensory Inclusive Certified locations. Over 550 locations across the U.S. and the world have worked with KultureCity to become certified with continuous training, sensory bags and app integration.

4. WHEELMATE

oloplast.com/products/bladder-bowel/wheelmate WheelMate is a free, interactive map app to find wheelchair-friendly restrooms and parking. It is powered by wheelchair users who add and verify every location themselves. The app currently has more than 35,000 locations across 45 countries, and almost 17,000 people have downloaded it. The app is available for Apple and Android, and no registration is required.

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Books

5. SPECIAL BOOKS BY SPECIAL KIDS sbsk.org

What began as an idea for a book series, developed into videos. Founded in 2016, SBSK is a multimedia movement that supports the acceptance and celebration of all members of the neurodiverse community regardless of diagnosis, age, race, religion, income, sexual orientation, gender or gender expression. The YouTube channel, which features full interviews with individuals of all ages, has over 2.4 million subscribers.

6. GEEK CLUB BOOKS geekclubbooks.com

This nonprofit uses technology and the art of autism storytelling to produce pop culture-based autism awareness education that is innovative, engaging, positive, and opens hearts and minds to a new way of thinking about autism. The organization produces interactive comics, curriculum, school assemblies, digital books and magazines, educational videos, and blog content to change perceptions and end negative stereotypes, as well as hires adults with autism who play a key role in their creation and presentation.

7. SPECIAL NEEDS BOOK REVIEW specialneedsbookreview.com

Social

10. BEST BUDDIES OHIO

facebook.com/bestbuddiesohio Join in the fun on Facebook as they stream a variety of singalongs, information, workouts and more! Best Buddies is an international nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, and inclusive living for individuals with intellectual and developmental disabilities (IDD). Visit bestbuddies.org/ohio for all more programming and events.

The website is a resource for special needs literature, including book and CD reviews as well as author interviews. Searchable by category, author, title and keyword, the book store includes reviews and links to purchase the items. The site aims to provide parents and educators of special needs children a resource where they can read, search, comment and buy books that can directly benefit them and others. However, the most recent post activity was a year ago, so it does not include recent releases.

11. MAKING AUTHENTIC FRIENDSHIPS

8. STORYLINE ONLINE

Siblings of people who have disabilities can connect with one another online through closed Facebook groups that provide members with validation, information and advice: SibNet for adult siblings, Sib20 for ages 18-30 and SibTeen for teens. For first through sixth grade typically-developing siblings, Sibshops provide peer support and guidance in a recreational setting. Lively three-hour workshops mix information, discussion and fun activities such as games, art, music and cooking. Search the online directory to find in-person or virtual Sibshops near you and view the curriculum online.

storylineonline.net

The SAG-AFTRA Foundation’s Daytime Emmy-nominated and award-winning children’s literacy website streams videos featuring celebrated actors reading children’s books aloud alongside creatively produced illustrations. Students of all learning abilities can help develop literacy skills by following along with text as the literature comes alive.

9. BOB BOOKS READING APPS

bobbooks.com/product-category/apps Award-winning learn to read phonics and sight word apps are available to purchase separately ($2.99) or as a bundle ($7.99 or $8.99). Bob Books stories and characters come to life with interactive games to make connections between letters and sounds, sound out simple words, spell words they’ve read and learn kindergarten sight words, building early readers’ confidence.

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makingauthenticfriendships.com

MAF is a responsive web-based application that helps individuals with special needs (age 13+) find friends at home or on the go, based on their geolocation, diagnosis, age and interests. Juliana Fetherman’s younger brother, who has ADHD and autism, inspired her to create the app to help everyone establish meaningful relationships. MAF has users in 35 states and 12 countries, with a large concentration in the New England area. It works like a game in that users create an avatar, find friends on an interactive map and chat with people to earn coins.

12. SIBLING SUPPORT PROJECT siblingsupport.org

13. CONVERSATION PLANNER

happyfrogapps.com/product/ conversation-planner-social-skills-4-asd-kids Available for free on the App Store for iPhone and iPad (offers in-app purchases), Conversation Planner teaches your child a step-by-step method to prepare for any conversation or social situation. Kids learn to think about who they are talking to, what that person will expect, when to know the person is ready for the conversation, etc.


Learning

Executive Functioning

14. RED TREEHOUSE

19. CHOICEWORKS AND

redtreehouse.org

This resource site supports the well-being of families and children with challenges, disabilities and health care needs (prenatal to age 25) by helping individuals find information and connect to tools, organizations, services and events in their communities. Features include an interactive map and searchable guides, toolkits, support groups and more. A program of Ronald McDonald House of Cleveland, Inc., Red Treehouse has been serving families across Ohio since 2011.

15. LIVESPECIAL.COM livespecial.com

Find free online resources, information and support services for families, professionals and individuals with special needs. LiveSpecial.com offers support for all ages, from birth to the elderly. The site also offers a video gallery with helpful videos. It's a project of NCJW/Cleveland.

16. DO2LEARN do2learn.com

Do2Learn provides thousands of free pages with social skills and behavioral regulation activities and guidance, learning songs and games, communication cards, academic material, and transition guides for employment and life skills. Premier products include View2do, JobTIPS, and books for purchase.

17. ARTICULATION STATION

littlebeespeech.com/articulation_station.php This speech and language app was created by a certified speech-language pathologist for parents, SLPs and other educators to help work with children and adults with speech sound delays. The comprehensive articulation program offers practice at the word, sentence and story levels in 22 sounds in English. Available on the App Store, the free app includes the P sound program. Purchase additional programs for $1.99-$7.99 each or upgrade to PRO for $59.99 to access all 22 programs and over 1,200 target words.

CHOICEWORKS CALENDAR beevisual.com These picture-based learning tools are available for iPhone and iPad. Choiceworks ($9.99) helps children complete daily routines (morning, day and night), understand and control their feelings, improve their waiting skills (taking turns and not interrupting) and make choices. It is designed for caregivers to provide clear and consistent support to foster a child’s independence, positive behavior, and emotional regulation at home and in the community.

20. IALLOWANCE

jumpgapsoftware.com/allowance/ index.html Available for iPhone and iPad, the app ($2.99) allows you to manage your child’s finances, chores and rewards that can be cashed in when set goals are reached. Teach children about earning, saving and spending. Schedule the frequency that you want chores to occur and set point or dollar values for each task, reminders with alarms, and approvals.

21. TIME TIMER timetimer.com

Currently free, the visual timer app for Apple and Android devices features a red disk that disappears as seconds go by to improve time management skills, create structure and make time make sense in a more concrete way. It can be used to help ease transitions, establish routines and encourage more independence.

22. FIRST THEN VISUAL

SCHEDULE HD goodkarmaapplications.com/ ftvshd-first-then-hd.html This comprehensive universal scheduling app works on all Apple iOS devices. FTVS HD ($14.99) lets you create and use all of these visual supports in one app: First Then boards, visual schedules, task analyses, social stories, choice boards and video models. Customize with your own photos and sound, set a timer for an entire schedule or individual steps, attach a choice board or video to any step, choose from five viewing options, and print and share schedules via email.

23. CALM calm.com

This top-rated app for sleep, meditation and relaxation offers sleep stories for adults and children, breathing programs, stretching exercises, and relaxing music. Beginner, intermediate and advanced users can practice mindfulness techniques. Topics include deep sleep, calming anxiety, managing stress, focus and concentration, Calm Kids and more. A free 7-day trial is offered, and a subscription to the whole catalog costs $14.99/month.

18. 123 HOMESCHOOL FOR ME 123homeschool4me.com/ home-school-free-printables The website offers tips, resources and over a million pages of free homeschool worksheets, games, lapbooks and lesson plans.

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Assistive Technology

24. BE MY EYES bemyeyes.com

Be My Eyes is a free app for iOs or Android that connects blind and low-vision people with sighted volunteers and company representatives for visual assistance through a live video call. Be My Eyes connects you with a global community of volunteers and company representatives who are ready at a moment’s notice to help you see — to lend their eyesight and support with everyday tasks.

25. PETRALEX HEARING AID APP

A phone-based hearing aid and hearing amplifier app, Petralex is available for free (with in-app purchases) for iOS and Android. The hearing aid will automatically adjust to specific features of your hearing. You only need a simple headset to use it.

26. APPLE ACCESSIBILITY apple.com/accessibility/mac

Apple outlines various assistive technologies built into Mac devices. Users can turn on accessibility features in system preferences.

27. ACCESSWORLD

29. ASSISTIVEWARE

“AccessWorld: Technology and People Who Are Blind or Visually Impaired” is the monthly online magazine of the American Foundation for the Blind. It provides app reviews, book reviews, product reviews and other objective, cutting-edge news and commentary.

AssistiveWare makes award-winning AAC apps including Proloquo2Go, Proloquo4Text and Pictello. Proloquo2Go is a symbol-based AAC app for iOS ($249.99) and macOS ($124.99) that can be used as a daily communication tool and to build language skills. Proloquo4Text ($119.99) is a text to speech AAC app for iOS for those who cannot rely on their voice to speak. Pictello is a talking visual story creator app ($18.99) for iOS that allows you to create and share visual social stories and schedules.

afb.org/aw

*Editor’s note: Augmentative and Alternative Communication (AAC) apps may offer a lower cost alternative to dedicated communication devices. While several are available, we highlight a few below. Full reviews by SLPs, teachers and parents can be found online.

28. COUGHDROP mycoughdrop.com

CoughDrop is a full-featured Augmentative and Alternative Communication (AAC) app that empowers individuals and the teams around them, including those with autism, cerebral palsy, Down syndrome, Angelman syndrome, Rett syndrome, or other complex communication needs. A two-month trial/evaluation period is free, then pricing is $6 per month.

assistiveware.com/products

30. TOBII SONO FLEX tobiisonoflex.com

Tobii Sono Flex is an AAC vocabulary app that turns symbols into speech. It offers language to nonverbal persons who are not yet in full control of literacy. Sono Flex offers structure, flexibility and a framework for language development, matching individual and situational communication needs. $99.99 and a free lite version is available. *Editor’s note: These descriptions are based on information from the developers; they are not reviews or endorsements.

BALANCING NEEDS

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PHOT0 COURTESY OF ELAINE EISNER

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hen the COVID-19 pandemic “We have done things we never thought hit and the country went we would do,” her mom, Elaine Eisner, says. into lockdown, it affected all “We try to think of more field trips that she Americans differently. Those most deeply can do.” affected are families with loved ones with The Eisner/Gohns have tried ways to special needs. Alana Gohn, 11, who was engage Alana in the outdoors, such as diagnosed with microcephaly as an infant, is working in the garden, swimming in the medically fragile with multiple pre-existing pool, going to parks or setting up the Slip’N conditions. Alana’s parents have kept their Slide, which has been good for physical daughter sequestered to keep her safe therapy when walking up the small hill. and COVID-free. This has created many “Talk to other parents about other Alana Gohn opportunities as well as challenges. creative ideas,” Eisner suggests. “Share Alana's parents have created a dedicated ideas of a toy or good art project.” space in their basement, decorated with her favorite things, She says it’s helpful to have constant communication so she can participate in virtual experiences. with your team of doctors. Like most kids adapting to these activities, some days it “Evaluate your loved one’s isolation and how it’s goes well and other times, it’s a struggle. impacting their mental health,” Eisner says. “Don’t stop With the world changing daily and these online asking or fighting for what is right for your family — opportunities on the rise, families are finding ways to whether with the school or team of doctors. We have been balance their loved one's need for connections to the able to do things because we have been good advocates.” community. It’s also important to remind other families to be Alana has participated in virtual yoga, music classes, inclusive when getting together isn’t always possible. FaceTime with friends, etc., but there are other ways she “Keep trying to think outside the box,” Eisner says. can interact with the outside world. — Angela Gartner


Family Matters

Building Skills and Discovering Work

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By Kate Adkins-Dix, UCP community employment manager social interaction, parents and caregivers can reinforce job readiness skills at home and set a clear expectation for competitive integrated employment. From practicing basic money management, utilizing household chore/ responsibility schedules, and discussing process-related tasks in a step-by-step manner, individuals with disabilities can learn or solidify important soft job skills, frequently taught by job training and development professionals, in a home environment. Parents and caregivers also can have ongoing, open conversations with their loved ones to gauge and start determining their workrelated interests. Consistent support at home coupled with professional services that are available allow individuals with disabilities to advance on the

path to community-based employment by enhancing their understanding of career interests, job skills and employment priorities. People with competitivelevel skills are supported to identify, apply for, obtain and retain jobs available in the community. OakLeaf Partners helps them discover work preferences, learn job-seeking skills and receive travel training to ensure they succeed on the job. Job preparation and employment skill building in OakLeaf Job Training prepares individuals with complex needs for employment in a

community setting. Individual needs are assessed through person-centered planning and are reviewed periodically for progress in meeting employment goals. As such, OakLeaf Partners provides employment services to individuals with a wide variety of disabilities, ranging from mild to complex. “OakLeaf Partners offers employment services at all levels,” says Paul Soprano, Director of OakLeaf Services. “From identifying preferences and interests to developing general employment goals and assisting them getting settled into their new job in the community, our staff is there to support.” For more information, contact your local Opportunities for Ohioans with Disabilities (OOD) office (oodworks.com) and/or local county board of developmental disabilities.

PHOT0 COURTESY OF UCP OF GREATER CLEVELAND

eople with disabilities represent the single largest minority group seeking employment in today’s job market. Employment services, such as those provided by OakLeaf, a Center of Excellence at UCP of Greater Cleveland, address and help to overcome challenges that individuals with disabilities often face while seeking employment opportunities. Various programs support adults and students with disabilities to thrive in employment while also enjoying greater financial and personal independence. Services provide career discovery and exploration, skill development, job placement and retention activities that support individuals throughout the process to ensure success. During challenging times that restrict community and

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EDUCATE, ADVOCATE, SUPPORT

Help us celebrate people in the community who are providing resources, plus inspiring and empowering others. y

AYESHA ABDULLAH Founder, The Therapeutic School House

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n 2017, Ayesha Abdullah took a leap of faith and left her special education teaching position in East Cleveland City Schools after 17 years with the district to open a one-of-a-kind childcare program specializing in young children on the autism spectrum. An intervention specialist with 20 years of teaching experience, she also is a mother of four children, including a teenage son on the spectrum. “When my son was first born, as a mother and being in the field, I knew something was up. When he was 2, he would only make sounds, so I took him to speech,” Abdullah says, recalling his diagnosis of Asperger’s syndrome (in 2013, it became part of one umbrella diagnosis of autism spectrum disorder, or ASD). She adds, “He didn’t speak, he was a runner and he had meltdowns. I had to home in on his triggers. No one knew how to care for him, and I still had to work. I experienced frustration because I wanted my son to have the best individualized care in a home setting.” It was during this process that Abdullah noticed a need that required filling and made it her goal. “I didn’t want to leave my teaching

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By Angela Gartner • Photography by Kim Stahnke

position, but I had the opportunity to loop with my special education students for three years, so I knew it was time to go,” she says. Abdullah used her entire life savings of $150,000 to renovate a 2,800-square-foot home in Richmond Heights and convert it into The Therapeutic School House. It provides a functional and play-based curriculum in a home setting. As a Type B Home Provider, Abdullah — with the assistance of her mother — services up to six children (four typical and two with special needs) ages 2 to 5. In addition to the daycare, they offer tutoring for ages pre-K to third grade, open play hours on weekends, and respite/parents’ night out opportunities that are open to members of the community. “Most traditional daycares aren’t equipped, knowledgeable, or experienced in caring for young children on the spectrum — we focus on the whole child,” Abdullah explains, adding that her philosophy is centered around building relationships. “Once a connection is created, both teacher and student can embrace the whole teaching process.” Abdullah knows the need is there; she encourages parents to seek intervention early, saying, “Accept your child’s differences as unique talents and don’t be ashamed of behaviors. You don’t have to explain anything. Don’t try to change them into what everyone expects them to be.” For more information on The Therapeutic School House, visit therapeutic-school-house.business.site or contact Abdullah at 216-526-1907 or therapeuticschoolhouse@gmail.com.

SARAH RINTAMAKI

Executive Director, Connecting for Kids

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arah Rintamaki, of Westlake, wanted to provide other families with the same connection she herself found through an informal support group. Both of Sarah’s sons struggled with speech and developmental delays and between the doctor, specialist and therapy appointments, she was feeling overwhelmed and lonely. By finding other families in similar situations, she says she felt connected and less alone. “Not only did these families share new therapies and program information, but they also had a safe place to express feelings of grief, frustration, pride and joy,” she says. Connecting for Kids currently serves 3,150 families in Cuyahoga, Lorain and surrounding counties who have concerns about their children ages 12 or younger. The organization serves all families, including those children with and without formal diagnoses. Connecting for Kids provides resources for a number of concerns, including anxiety, attention issues, developmental delays, epilepsy and sensory issues. It offers presentations by pediatric professionals, interactive workshops and hands-on training. For example, it will be offering a six-week workshop called “Healing from the


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Amy Clawson, Northern Ohio Family Specialist for Ohio Family to Family Health information Center

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immy Clawson, 23, who was diagnosed with cerebral palsy after being born prematurely, is like his mom: adventurous. In the days before the pandemic, Timmy was involved in the community by volunteering at the Cleveland Museum of Natural History, where he gets to be surrounded by something he loves — dinosaurs; and participating in Youth Challenge in Westlake. Timmy also is passionate about football and attends as many sports events as possible. Amy Clawson, his mom and Northern Ohio Family Specialist for Ohio Family to Family, says she and her husband, Paul, taught Timmy through high school to show people what he can do and he has a full life because he worked hard with many people who supported him. His brother, Ben, who lives in Cincinnati, is a huge advocate for Timmy’s good life today. Amy Clawson says that just like the families' advocates before her, whom she considers her mentors, she wants to use her

BOOKSHELF

Trauma of Institutional Racism,” a Managing Meltdowns program in Spanish, and a LGBTQ+ Support and Resources program. “During this pandemic, it is even more important that parents become their child’s teachers and focus on the social and emotional development of their child — to aid them, their education and support their social and emotional development,” Rintamaki says. “Connecting for Kids offers education and support, including not only virtual programs for which parents can register, but also online resources, videos and toolkits.” Connecting for Kids offers Coffee and Chat support groups that usually meet in person but have been offered virtually through Zoom during the pandemic. These interactive groups, which allow families to meet others facing similar struggles, consist of local families because they are only open to families in Northeast Ohio. “One of our most popular means of support is Facebook groups that are offered for families, dads only, parents of gifted children, caregivers of those with moderate-to-severe disabilities, and familias hispana (a Spanish language group),” Rintamaki says. “Families can ask questions, give encouragement and share resources.” When asked about the future of Connecting for Kids, Rintamaki says it is expanding programs to help families as they navigate hybrid and virtual learning environments and deal with high levels of stress and anxiety. “We are working with BIPOC professionals and organizations to create specific education and support programs for families who identify as Black Americans and Latinx,” she says. “These programs are designed to help families deal with institutional racism and help their children achieve the best outcomes. Finally, we will be rolling out specific programming targeting families of children with moderate-to-severe disabilities because we know many of these children are struggling in this new socially distant world.” Local families can reach out via phone or text at 440-570-5908 (para español, 440-907-9130) or email at info@connectingforkids.org. Families also can visit connectingforkids.org.

voice to make changes and help families who have children with special needs. It began over 20 years ago, when she was a co-chair of the Cincinnati Children’s Hospital Family Advisory Council. She went on to a role as a parent coordinator for the division of developmental and behavioral pediatrics at the hospital. “That was a meaningful position when I grew passionate about helping families on a regional and statewide level,” she says, adding that she spends a lot of time educating families on how to navigate systems. The biggest hardship for families is when their child becomes an adult, she says. Families who struggle the most are those who have children that are entering into adulthood with little to no supports in place. Recreation and social activities, job training/experiences, medical supports, and local developmental disability agencies all can play a vital role in an adult with a disability having a good life, she advises. “You need a very strong safety net before that child leaves high school,” Clawson says. She advises families to get trained, learn the systems, build your networks, and take classes, because they need to become knowledgeable and reach out to people who are interested in the child/ person’s well-being. “The connections in Timmy’s community had to be strong or strengthened — the community connections as well as the interpersonal relationships,” she says, adding that due to his involvement in the community, his confidence has grown and he has a pretty good life. Visit ohiof2f.org

I AM NOT A LABEL: 34 artists, thinkers, athletes and activists with disabilities from past and present By Cerrie Burnell, illustrated by Lauren Mark Baldo These short biographies tell the stories of people who have faced unique challenges that have not stopped them from becoming trailblazers, innovators, advocates and makers. LAUGHING AT MY NIGHTMARE By Shane Burcaw Shane Burcaw, a 26-year-old with spinal muscular atrophy, writes about how he handles his situation with humor and a “you-only-live-once” perspective on life. While he does talk about everyday issues that are relatable to teens, he also offers an eye-opening perspective on what it is like to have a life threatening disease. Check out his co-creation YouTube channel “Squirmy and Grubs” with his girlfriend Hannah at youtube.com/c/squirmyandgrubs. livespecial.com 2020-21

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Therapies

Early Childhood Mental Health

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ffective early intervention can make a critical difference in a child’s potential to grow and learn. Young children who are experiencing mental health challenges might exhibit: ·D ifficulty eating, sleeping or sharing feelings

·O utbursts, tantrums or aggression

· Lack of attachment

· Bedwetting

· Depression

· Anxiety

· Hyperactivity

The Early Childhood Mental Health (ECMH) program at the Achievement Centers for Children provides supportive virtual/telehealth services and, when possible, home, community or centerbased services for children age birth to 6 who may be experiencing social, emotional or behavioral challenges or family-related stress. Our licensed clinical social workers partner with the entire family to prevent and address mental health issues. Services include collaboration with other community providers to maximize positive outcomes and ensure a holistic approach to addressing family needs. Call 216-292-9700 for more information on our Early Childhood Mental Health program or to learn more about all the services the Achievement Centers for Children offers. achievementcenters.org

DOUG BLECHER Founder, Autism Personal Coach

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or Doug Blecher, founder of Autism Personal Coach, it all started after college when he began working with children with autism. “I realized that there was not a lot of support for autistic teens and adults," he says. “About 20 years ago, this group of adults were marginalized and not getting opportunities, especially as they graduated high school and became adults. It comes from seeing the lack of support for (young adults with autism).” Currently, Autism Personal Coach serves ages 14 and older, however, people don’t have to be diagnosed with autism to receive help. Blecher says everyone has different goals when they contact the organization. Some want to learn how to advocate for themselves, get employment, gain executive functioning skills, help develop community connections, or meet sensory needs. “We provide customized coaching to help them be more self-sufficient and find their purpose,” he says. He advises for parents to start transition planning when their kids are born. “Thinking about it early (before the high school phase) helps kids find a purpose,” Blecher says, adding not to rely solely on your school district for opportunities to learn and make connections. “Find outside service providers, if necessary. Try to find those experiences in those environments to figure out what they like and don’t like.” Belcher has a podcast, “Autism Stories,” which provides perspectives of people with autism. He is now the chair for the Nonpartisan Voter Outreach Disability Committee to help people with disabilities get involved with voting and help them deal with the upcoming challenges so they can make their voices heard. “We always say that autistic people are the true experts of the autistic experience and it’s part of how kids can help to embrace their identity,” he says, “To me, it’s really about making sure every human has the opportunity to reach their potential.” Listen to “Autism Stories” at anchor.fm/autismpersonal-coach or visit autismpersonalcoach.wordpress. com for more information. Lindsey Geiss contributed to this story.

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Advocacy

Advice for Empowering Self-Advocacy By Grace Blatt, William Gallup and Sean Walker, Good Life Ambassadors/Cuyahoga County Board of Developmental Disabilities (Cuyahoga DD)

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eople with disabilities belong at the center of the system of services and supports that enable them to live the lives they want to live. This premise is the essence of the personcentered approach — an approach that requires one to advocate for their needs and preferences. While advocacy can be a pathway to meaningful change, it takes training and skills development. Grace Blatt, William Gallup and Sean Walker have been in Cuyahoga DD’s Good Life Ambassadors role

for nearly four years, educating and inspiring other self advocates and the general community. According to Blatt, “Advocacy is the essential action of making your needs and wants known in order to gain accommodations, understanding and acceptance from others.” Walker strengthens this definition by reminding us that it includes everybody — people with physical and mental disabilities.

WHY ADVOCATE FOR YOURSELF? “It’s important to advocate for yourself because there are times when people around you want to help you succeed but either don’t have the confidence to ask you or may forget to ask you,” Blatt says. As a college student, she benefits from others helping her succeed with her educational goals. For Walker and Gallup, who live independently, leading by example sends a strong message. “Sometimes, we have to set an example and compel others to self-advocate,” Gallup says. Years of experience teaching others have afforded Blatt, Gallup and Walker important insights into empowering advocacy.

ADVOCACY TIPS • W alker says, “Set little goals within the big goal and then set deadlines; take baby steps."

want to; just put your mind into it and believe in yourself.” • B latt stresses that advocacy doesn’t just mean asking for your needs to be met.

• H e adds, Use natural supports, • “Tell others what has worked too, like family and friends, as for you in the past and offer long as you’re in the driver’s seat.” suggestions that people could • G allup, who’s also a bocce coach, implement to help you reach says, “You can do anything you your goals,” she says.

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Champion Your Rights to Equal Access and Opportunity By Chris Garr

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dvocacy is the way we move forward as a community. The ADA serves as a baseline, a starting point for access and civil rights for people with disabilities. There is much more work to be done to faithfully ensure that the spirit of that legislation is realized. Americans with Disabilities Act (ADA) Cleveland, a coalition of agencies that provide services to people with disabilities, has created a movement of disability advocacy, improved accessibility and community awareness. It can connect families with the tools and resources needed to advocate for greater access and inclusion in the community. HERE ARE SOME SUGGESTIONS FOR ADVOCACY FOR FAMILIES AND INDIVIDUALS WITH SPECIAL NEEDS: • Pay attention to legislation and public policy that affects people with disabilities and lend your voice to a cause that champions equal access and opportunity. • Understand that community awareness moves accessibility forward. At times, ADA Cleveland finds itself “preaching to the choir” when the daunting task of conquering the real mountains of public understanding and community acceptance remain.

• Use public services like RTA Paratransit and the Cleveland Metroparks; visit cultural and arts institutions; frequent your public library. There remains a stigma that people with disabilities do not leave their homes. Prove the stigma wrong, educate your community and advocate for change. • Join the ADA in proclaiming proudly and loudly that people with disabilities exist as active and engaged members of society.

Improved accessibility in public spaces, communication, and aspects of all areas of daily life are necessary for the full inclusion of people with disabilities. Accessibility can mean different things to different people; those with mobility disabilities face different obstacles than people who are blind. People who are blind have different communication needs than people who are deaf and hard of hearing. Finding a universal solution isn’t always easy. ADA Cleveland provides a safe space to conduct constructive dialogue, learn from each other and create open partnerships. Visit adacleveland.org or facebook.com/adaincle to engage with us, learn with us, and find an organization that meets your needs.

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HAPPY ANNIVERSARY ADA celebrated its 30th anniversary on July 26, 2020, with the first steps of a Call for Access. Understanding that the process is a marathon, not a sprint, ADA Cleveland resolved to continue to move advocacy forward with dialogue, collaboration and a shared commitment to helping people with disabilities reach their fullest potential. ADA Cleveland can connect you to the resources and services you need. In constant dialogue with 20 agencies providing a vast array of services, ADA Cleveland is in a unique position to find solutions, educate the public and take action. Among many programs and services, ADA Cleveland member agencies do the following: • Educate the community on topics related to disability and accessibility • Ensure equality of opportunity, full participation, independent living and economic self-sufficiency • Advocate for accessible and inclusive spaces in homes and communities • Provide pediatric outpatient therapy services, school-based services and specialty clinics that help children move their bodies and find their voices so that they can better access and interact with their community • Operate an Aging & Disability Resource Center and help people identify the resources they need to remain in their homes to be as independent as possible • Provide opportunities by making sports and recreation accessible for anyone by adapting to fit individual needs

PHOT0 COURTESY OF ADA CLEVELAND

s Advocacy



Advocacy

Becoming A Strong Disability Self-Advocate By Nathan Morgan

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s an individual with autism, I’ve come to understand and appreciate the importance of strong self-advocacy skills. Though the world is changing and reasonable accommodations are more commonplace, that is not true everywhere. Individuals with disabilities still may struggle to access appropriate services and integrate into their communities, among other hurdles. The following are important skills and activities of which I believe every selfadvocate should be aware. When we have an understanding of our wants and needs, we are better able to advocate for change in our communities to create a more inclusive world for everyone. VOTE COMPETENTLY — Research how politicians view policies and practices that affect those with disabilities. Some examples include special education laws and access to health insurance. I disagree with the expression, “It’s not polite to talk politics.” Issues that affect our very right to exist, as full members of society, should be discussed openly and competently — difficult conversations are still worth having. SHARE ABOUT YOUR DISABILITY — I think it is fair to say that most people who underestimate those with disabilities aren’t bad people, they’re just misinformed. Many self-advocates speak at conferences and take an active

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role in providing training opportunities for medical and therapeutic providers. Others share about their disability through social media and video blogs. Even if it’s just within your own group of friends or family, sharing about your disability breaks myths and creates better understanding and, therefore, a more inclusive community.

counselor also can be enlightening. Having unbiased feedback from a supportive person can be very helpful. Self-discovery gives us a better understanding of where we might need supports and where we have unique gifts to share.

BE PROACTIVE — Many businesses have started to have sensory-friendly shopping times and events. If you know that there are certain times that might be too crowded and overwhelming for you, try going to stores and restaurants at less busy times. Are there places you frequent that could be doing a better job of providing accommodations or activities for people with disabilities? Call them and provide kind, constructive feedback. Many businesses are finding that being inclusive helps their bottom line and helps you as a shopper — everybody wins.

IDENTIFY YOUR COMMUNITY AND CONNECT — There are many types of group models (e.g. support, structured activity, advocacy) for people with disabilities. Discussing important topics with people who have a shared background is empowering. It is also a good way to learn what strategies others are using to navigate their daily lives. If you are having trouble finding groups to connect with, the Milestones free Autism Helpdesk can help you find a list of community-based groups in your area. Give Milestones a call at 216-464-7600 ext. 200 or complete an intake form at milestones.org/helpdesk.

LEARN ABOUT YOURSELF (BOTH YOUR STRENGTHS AND WEAKNESSES) — Self-discovery is very important for every self-advocate. Everyone, regardless of whether they have a disability, has their own unique strengths and weaknesses. I have found that journaling about daily activities helps me to identify my strengths and weaknesses. It helps me to reflect on my day; on what went well and what could have gone better. Talking to a

Nathan Morgan, MSSA, LSW, is an autism self-advocate and the early intervention/school age coordinator at Milestones Autism Resources, located in Warrensville Heights. Passionate about providing autism education to families and to the community at large, Nathan is active in sharing his experiences as an individual on the spectrum at events, on panels and through his writing. Nathan has a BA in psychology and Japanese, and an MSSA from Case Western Reserve University.



Family Matters

Advocating for Individuals with Special Needs

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Laurie G. Steiner, Esq., CELA

ou’re taking care of your disabled child and hopefully, you’re doing okay on your own. However, there are certain issues that require legal help. Here are several tips to help you know when this may be needed.

• If your school district refuses to cooperate with you in your child’s IEP or 504 plans, contact a special education attorney for assistance. The attorney can assist with the planning or any fair hearings that might be necessary to follow federal and state laws and protect your child. • When your child turns age 18, you may need to apply for supplemental security income to provide financial assistance. The initial application can be made online, but is almost always denied. A social security disability attorney should assist with the appeals and court hearings that follow to ensure your child obtains eligibility.

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• When you die, your estate must be handled properly to ensure your disabled child doesn’t lose their supplemental security income and/or Medicaid health coverage. You must set up a special needs trust before you die to hold any assets for your child’s benefit. A special needs or elder law attorney is a requirement to make sure your estate planning is completed correctly.

When in doubt, call one of these kinds of attorneys and ask questions. They are well-versed in the issues you face, are happy to assist, and you likely will find the cost is the best investment you ever made to help your child with special needs. Laurie G. Steiner, Esq., CELA, Solomon, Steiner & Peck, Ltd. 6105 Parkland Boulevard, Suite 140, Mayfield Heights, 216-765-0123, ssandplaw.com


Advocacy

Advocacy is a Team Sport By Chris Garr, CEO of Youth Challenge

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he push for equal rights for people with disabilities started long before The ADA was signed by President George H. W. Bush in 1990. For disabled athletes, adaptive sports represent a platform for equality and opportunity. 1948’s Stoke-Mandeville Games (held at the same time as the London Olympics 35 miles away) provided an opportunity for World War II veterans to showcase their athletic abilities. Trailblazers in adaptive sport never accepted “no” as a response to their desire to play. While physical activity goes hand-in-hand with athletics, the greatest benefit to Youth Challenge team members is social.

For many participants, YC offers their first (and sadly, sometimes only) opportunity to be on a team, engage in sport for the love of the game, and compete alongside teammates. Our world isn’t always constructed for maximum accessibility. While laws like the Americans with Disabilities Act provide guidelines to mitigating barriers — and society becomes more open and inclusive — skills like self-advocacy and resilience still remain critical for navigating social and physical bumps on the trail. For children with physical

disabilities, understanding how to best adapt to challenges and how to see creative ways to accomplish tasks is a monumental life skill. A child’s willingness to try new things, staff experience with adaptive recreation and art, the team mentality of teen volunteers, and a culture of positivity create a nurturing environment for social, emotional and physical growth and well-being. With sports and artistic expression as a catalyst for growth, teen volunteers and participants work together to achieve. Some skills — like throwing a ball for a child with

muscular dystrophy, orienting a gym space for someone who is blind, or holding a paint brush for someone with cerebral palsy — seem nominal but are crucial building blocks in developing confidence and self-esteem. These traits form the backbone of effective self-advocacy. Advocacy isn’t only about the individual. For example, Youth Challenge alumni are now fully engaged in advocating for their peers and the broadest possible community of people with disabilities. Taking on issues such as access to voting, inclusivity in the arts and promoting active lifestyles, YC’s care-free kids are now making strides as community leaders.

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Advocacy

The Importance of Relationship-Building ADVOCATING FOR YOURSELF AND OTHERS

“I WANT WINGS.” Puzzled, the local congressman tilted his head and looked at my son, Jack, wondering aloud if he was requesting an airplane ride. Jack has severe autism and has little spoken language, so he typed this request for wings on his iPad. Jack continued to gaze at the congressman, patiently waiting for the appropriate response. Having heard this phrase many times through the years, I smiled and told the congressman that what Jack wanted was to head to our favorite local steakhouse and order some buffalo chicken wings. Our congressman laughed knowingly and promised Jack a lunch date sometime soon. We all smiled, shook hands, said our goodbyes and went on our way. I had taken Jack and his sister to meet our new congressman, Joe Kennedy, at an office hours event at our town library. The meeting was short — maybe five minutes — and I spoke to the congressman about autism and advocacy. Jack didn’t interact a great deal other than to ask for wings on his iPad. But with just that one quick interaction, Jack left a lasting impression on the congressman and his staff. A couple of months later, I called the congressman’s local office to ask that he sign on as a co-sponsor of the Autism CARES Act, the foundation of the federal government’s efforts

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can engage in their own way and at their own pace. Relationship-building is key to authentic advocacy. Like Jack did, I encourage people to take advantage of the opportunity to meet elected officials when they are in the community. Autism Speaks hosts numerous state and federal “Hill Days” every year which allow advocates to gather in a public, organized way to meet with legislators. For those unable to attend events in person, social media and e-mail are great Judith Ursitti, director of state government affairs alternatives that can help for Autism Speaks, and her son, Jack. build relationships with elected officials. around autism and the primary Autism Speaks offers an source of federal funding for opportunity to get involved in autism research, services, training advocacy efforts on a regular basis and monitoring. I identified with the Autism Speaks Volunteer myself as a constituent and started Advocacy Ambassador Program, to share some information about the a grassroots program designed to legislation. Before I could get the build relationships between first sentence out, the staff person constituents and legislators at the on the other end of the phone federal level. interrupted me, asking, “Wait, are Advocacy Ambassadors share you Jack’s mom?” I almost dropped personal experiences and information the phone. on policies related to autism It turns out Jack had made an and serve as the main points of impression. Why? Because, in his contact for their respective federal authentic way, Jack was an advocate. legislator(s). Ambassadors work Our congressman signed on as a codirectly with Autism Speaks staff in sponsor right away. both local and Washington, D.C., When thinking about the word offices to implement a variety of “advocacy,” many impressions can initiatives. Currently, this diverse come to mind: maybe an image of group of advocates includes more a determined throng of individuals than 300 volunteers from 46 states marching up the steps of a grandiose and the District of Columbia, capitol building, or maybe of including people with autism, someone in a business suit speaking family members, lawyers, teachers, eloquent testimony at a legislative healthcare providers and more. hearing. But advocacy is so much For more information about getting more than that. Authentic advocacy involved with advocacy efforts, visit is something with which everyone autismspeaks.org/advocacy.

PHOT0S COURTESY OF THE FAMILY

By Judith Ursitti, director of state government affairs for Autism Speaks



People to Know

Meet individuals, organizations and companies that strive to provide support for those with special needs.

Job Training Pops Open for Teens with Special Needs Northcoast Corn Creations provides learning environment for students to gain vocational skills outside of the classroom By Lindsey Geiss

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eenagers Logan, Ryan, Matthew, Antonio and LaShawn work at Northcoast Corn Creations, a gourmet popcorn shop located in Willoughby that provides employment training opportunities for students with autism and developmental disabilities. Fred Frisco is president of Re-Education Services, a special needs school, and Northcoast Corn Creations, and an intervention specialist. He says he developed the shop around three years ago to provide a safe, constructive job training worksite for students who need to learn employability skills outside of the classroom. “I am a teacher who fell in love with empowering others to understand special education as a whole,” he says. “The talk around special education is all about what is next. We want to give them opportunities to want to try to go outside those boundaries. The social skills are a critical piece.” While he had other business ideas, the gourmet popcorn seemed to be a good fit for this learning environment. In the shop, there are many flavors to choose from — if you love sweets,

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Fred Frisco is president of Re-Education Services, a special needs school, and Northcoast Corn Creations, and an intervention specialist. He developed the shop to provide a safe, constructive job training worksite for students with special needs. Photo by Angela Gartner

try caramel, banana and blueberry, or go for the savory flavors like cheddar and pizza, salt and vinegar, white cheddar and dill pickle. A colorful signature mix, which is inspired by the autism awareness puzzle ribbon, is called “Embracing Autism” and blends the fruit flavors. The teens, who are from school districts around the region, work under the guidance of occupational and speech therapists, intervention specialists, teachers and other support staff, and help to produce and package products, sell the popcorn during

store hours and provide customer service for online orders. "Now more than ever during these challenging times it is important to surround our children and ourselves with positive, uplifting, familiar people," Frisco says."Support local business and local families. A little support will go a long way." Kaitlyn Lieb, an intervention specialist at Re-Education Services who works with the students, says they are learning independence and vocational skills, but also the functional curriculum — math, science, reading, social studies — through basic job tasks. “This is their last chance to work on this vocational aspect before they jump into after-school programs,” she says, noting most kids in the program are from ages 16-21. “(The students) are employable, but they just need additional support at the workplace. I think it’s important to have a diverse community in the workplace. They should have all the opportunities that we do — and they would really work hard and do a good job.” Visit northcoastcorn.com for online ordering.


needed something to do indoors for winter.” Jassem was excited at the prospect of social opportunities for her children to connect as a family and with others, so Bowling Buddies was born. t is fitting that Jennifer Jassem’s “This is the first time I’ve run or moniker rhymes with “awesome,” for started anything,” she admits. “Just that’s how many parents describe because it doesn’t exist, doesn’t mean the bowling club she organized for it can’t. If nothing is available, make it families with special needs. happen.” The Brook Park resident She credits her and mother of four children ability to juggle it under the age of 6 who are all to the help she on the autism spectrum receives from family knows how challenging and a mother’s it can be to find inclusive helper, a 13-yearactivities to engage special old student who needs youth and peers. serves as her extra Jassem’s four children — set of hands with including the oldest two, a the children at set of twins — attend the home or out in the Jennifer’s Lerner School for Autism at community. daughter bowls Cleveland Clinic. “I wanted at Bowling Buddies. “I’m guarded with my Bowling Buddies children in new situations,” to be affordable she says. “It’s intimidating to and a stress-free, relaxed jump right in, and it can be environment,” she explains. “I difficult to connect with other hope to take some pressure parents. With four young kids, off parents. The bowling alley I need accountability to do manager has been great to things with each of them.” work with and gives families Jennifer Jassem It took some trial and error the flexibility we need. The to find the right fit. program is noncommittal — “We tried adaptive t-ball, but the families pay as they show up, so they can program grouped my 4-year-olds with try it without fear.” 15-year-old young men,” Jassem says. “I heard from the parents of a 16-yearThey also tried swimming and old boy who were so thankful to have horseback riding; however, the children something to do once another activity have skin sensitivities and issues with ended,” she says. “The young man has a heat outdoors. lot of energy, so he needs a sensory diet “We were looking for something, to curb his appetite for running. Heavy then we went to a birthday party at a lifting and rolling the bowling ball helps bowling arcade,” she recalls. “At first, with these sensory needs.” my daughter would not approach the Other parents have reported similar games. Then she was on the lane, so benefits and value the practice their we quickly got a ramp, and she loved it. children get with waiting, turn-taking She bowled for an hour!” and social skills. Jassem wanted to continue the “I’m so thankful for the success of the activity, but the only adaptive league group,” Jassem says. “The interest and she found was in another city and she feedback was a pleasant surprise. What needed something closer to home. initially began as a way to encourage “I put feelers out on the Connecting social interaction and get my daughter for Kids Parents Facebook page for a off the iPad turned into an inspiration bowling league, and it began with two for me and others. We all need to moms I knew from school and two I met encourage each other.” at a playgroup,” she explains. “Then it For more information on Bowling drew interest from 22 families who also Buddies, find the group on Facebook.

SCORING FAMILY FUN

CREATING A COMMUNITY

WITH BOWLING BUDDIES

OF INCLUSION AND SUPPORT

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Molly Blake at Fairview Park’s Adaptive Safety Town.

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olly Blake is a mother of three and an educational aide for Fairview Park City Schools Early Childhood Developmental Assistance Program (DAP), a special education preschool for children ages 3 to 5 years old with a 50/50 model in which 50 percent of the students enrolled are peer role models. Throughout her 20 years working with children, Blake has offered support to the special needs community and earned recognition for her efforts, being named Fairview Park City Schools Employee of the Year for 2017. Drawing from her professional and personal experiences, she has been instrumental in bringing inclusive and adaptive programming to families across the community, most notably a model Adaptive Safety Town program. “My passion is working with children with different — and exceptional — abilities,” Blake says. “I love working with families. In the years I’ve been an educational aide, I’ve become very close with my families and, through that, I would watch them go through their therapies. It’s a 24/7 job to advocate for your children. I felt the resources were there, but sometimes not known about. I volunteered on the Milestones Autism Resources Board livespecial.com 2020-21

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several years ago, and at the Strike it Big event was where my ‘aha moment’ came that we need to do more.” Blake’s own experience growing up influences her work and parenting. “I was diagnosed with a learning disability and had an IEP throughout school, so it hits close to home,” she says. “At the time when I was diagnosed, there weren’t a lot of resources for my mother. I remember knowing how different I was and watching my mom struggle along with me.” “Then, becoming a mother, my son had pretty severe ADD,” she says. “It took me a while to go through the process and learn about medications and fighting for rights in the classroom. Accommodations are necessary. It gives me perspective from both sides — as an educator and parent. I feel like everyone is compassionate, but I can connect a little more — I understand the fight to make it day to day.” Blake adds, “My oldest started my advocacy, and now my 16-year-old identical twin daughters also take part, volunteering with programming and babysitting. I’m blessed with intervention specialists and teachers who have treated me with respect, as well as supportive administration and families.” Danielle Danberg, program coordinator for the Fairview Park Recreation Department, collaborates with Blake on programming. “Molly is fabulous and does a lot with special needs children,” Danberg says. “We knew there was a need when I came on board, and we wanted to start doing more adaptive programming here. We work with the schools, and Molly spearheads the Adaptive Safety Town and our respite nights at the Gemini Center (both of which started about four years ago).” While many communities offer Safety Town for children entering kindergarten, Fairview Park is one of only a few in the area to offer an adaptive session for friends in grades kindergarten through third, so children with special needs can benefit from repeat participation or take part at a developmentally appropriate time. Like the traditional program, Adaptive Safety Town is a week-long course focusing on safe choices and practices in the community, including how to act in emergency situations. The curriculum

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is the same and includes pedestrian safety, school bus safety, seat belt safety, fire safety, water safety, 911 emergency calls and stranger danger. The experience educates children and first responders alike. “Our fire/EMS, police departments and bus drivers have their own experience and formal training and are sensory-sensitive and accommodating to the needs of our students,” Blake says. “They are patient and give extra time. Sometimes Safety Town is a child’s first experience ever meeting and being exposed to community helpers because they were fearful before. Here, they can do it at their own pace. Parents have cried while taking pictures. I love teaching them safety skills, but these moments are special. Watching youth volunteers become involved, learn and understand is another rewarding part of it.” Leslie Dorsey, a Fairview Park mother of two, praises Blake and values these programs. “We’ve known Molly since my daughter Cailyn, 9, entered DAP when she was 3,” she says. “Molly was a teacher’s aide and one of the first people we met in the district. She was so welcoming and wonderful. Cailyn has autism, anxiety and ADHD. She attended DAP for two years, then kindergarten in the district. Molly is the biggest advocate for all the kiddos. She has the biggest heart and is the kindest person — she’s like an extension of our family. She’s always looking out for the best interest of the kids. “Safety is always a big concern for us since Cailyn has impulsive behaviors,” Dorsey says. “We did Safety Town for several years. She loves it and still talks about it when we go to the rec. It was a huge help for us to have an adaptive program taught at her level.” Dorsey adds that her daughter also has attended parent respite nights a few times, saying, “It is nice the teachers and aides get to know our kids outside of school, and it gives parents a muchneeded break. They make it so fun and include siblings, like our 6-year-old son who is a typically-developing kiddo. Including special needs children with peers is a great social experience.” For more information on Fairview Park’s Adaptive Safety Town and other programming, visit fairviewparkrec.com/ safety-town.

Tammy Goldberg, National Council of Jewish Women (NCJW/ Cleveland) employee.

SHOWCASING EXEMPLARY WORK ETHIC

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had tears, I was so happy,” says Tammy Goldberg, 23, recalling her first day as an employee of the National Council of Jewish Women/ CLE. “I said, if I get a job, I want to work at NCJW/Cleveland. It was my dream to work there. I don’t want to go anywhere else.” Goldberg, a Horvitz YouthAbility program participant, was hired by NCJW/ CLE on Sept. 5, 2017. YouthAbility serves disabled and at-risk youth by engaging them in volunteer service, vocational activities, and social enrichment possibly leading to employment. “One of the best days I’ve had at NCJW/CLE was handing Tammy Goldberg her first paycheck,” Executive Director Mindi Axner said in the employment announcement. “Tammy was one of four who volunteered in the warehouse sorting donations to the Designer Dress Days and Thriftique Showroom over the summer. She quickly stood out as their leader and we really needed help year-round. With Tammy, it was a slam-dunk.” Goldberg couldn’t be happier, saying, “I love working at NCJW/CLE with Nate and Shirley in the warehouse. I can’t wait to get to work in the morning. My favorite part of going in to work is seeing everyone and doing my job. I hang and sort clothes and help with vacuuming.” She also helps to unload and sort donations and enjoys seeing the fashions come in. Goldberg’s service in the warehouse helps NCJW/CLE prepare


for its four-day annual clothing and accessory sale — a 50-year landmark event in the community and major source of funding for the organization’s initiatives — as well as keep the Thriftique Showroom resale shop stocked and organized. “Tammy is dependable and a very hard worker,” says her mom, Caryn Goldberg. “Even as a child, she would do her homework right away. She’s not a procrastinator. She has a great work ethic and loves going to work. When it’s snowing and I can’t get her there, it makes her very mad. She says, ‘I want to be there working!’ She loves it there and the people there, and they like her, too. She also saves her money for when she goes out with friends.” A 2013 Solon High School graduate, Goldberg also participated in Mayfield School District’s Cuyahoga East Vocational Education Consortium (CEVEC), which gives high school age students from 16 districts in eastern Cuyahoga County opportunities to experience various jobs and careers while gaining real world training at one of over 100 business partner sites. CEVEC also offers job-seeking instruction and programming to support independent living skills. As part of the vocational programs, Goldberg visited a number of workplaces, including a hotel, assisted living facility, food bank and retail store, but she fell in love with NCJW/CLE right away. Tammy advises students and adults aspiring to work to try things out and get experience. “I can teach you!” she offers. The happiness and fulfillment Tammy gets from her work brings her mother joy. “She loves her job, and I’m glad she does,” Caryn Goldberg says. “It’s nice there are programs out there that can help parents of children with special needs to get them into the working field.” She urges parents and others to “focus on the needs and strengths” rather than any label or diagnosis. To learn more about NCJW/ Cleveland its programs, visit ncjwcleveland.org. For more information on the Horvitz YouthAbility Program and CEVEC, visit jfsa-cleveland.org/horvitzyouthability and mayfieldschools.org/ cevec.aspx, respectively.

Lisa Sturgill

FOSTERING INCLUSION AND LOVE

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5-year-old boy practices counting cotton balls and rolling them through a paper towel tube taped to the back deck. Lisa Sturgill, his foster mother, looks on, guiding him with the same patience and love she has shown more than 75 other foster children over the years, in addition to her own four children through birth and adoption. Sturgill and her husband, David, are known in Lake County as long-standing foster parents for many children with special needs, including medical needs, behavioral needs, PTSD from a history of trauma, and ADHD. “I’ve fostered for 22 years,” Sturgill says. “My own children are all grown up now. The youngest is 21 and has medical needs associated with primary immune deficiency. I help navigate and assist with insurance and infusion medication to help her lead a normal life.” She is comfortable providing such specialized care. As a foster parent, she says, “I’m always learning something different. Right now, we are waiting on an autism diagnosis — it is a long process. (Our boy) has been with us since October. When he came to us, he would squeal and have behaviors. Since starting with a behavior specialist 10 months ago and other early intervention, he has made progress. It’s been eye opening — it takes a community with doctors and preschool teachers to support parents during the ETR (evaluation

team report) and IEP (individualized education program) process and more... I’ve learned to navigate and advocate the Americans with Disabilities Act.” The Sturgills have fostered children from birth through age 19. “Usually, we foster for years,” she says. “It is rare to have a child placed with us short-term. Most are long-term, which is beneficial to work in depth with the school system, so we know the teachers and aides. We can dig in and make a difference.” Sturgill describes fostering as a team. “We have a surrogate parent or advocate for the IEP,” she says. “When the child is reunified with the parent, I try to still be part of that village. I work to support the parent and include them alongside with me and the schools and in doctor’s appointments. When the biological parent is part of that system, we create a flow of support for greater success. I look at foster parents as tools and an extra extension of families to help.” Sturgill’s oldest two children are her biological daughters. She recalls how her family’s fostering journey began. “My son is my husband’s nephew placed with us after a tragic event,” she explains. “When our own daughter was 7 (she’s now 30), she saw “Feed the Children” on television and asked, ‘Why can’t we help kids?’ And we did. It was that experience that inspired us to get involved in fostering when we were caring for him. We kept that journey going and were blessed with our daughter whom we’ve had since her birth.” “All these years of raising children, I’ve been able to stay home while David worked in law enforcement, so I could dedicate time to children with special needs and be involved full time,” Sturgill says. “There were times when we would foster five children at a time, (in addition to) our own four. If they had multiple placements or children with medical needs, they would call us. You have to give your whole day to the children and their appointments (doctors, school, etc.).” David retired five years ago, so Sturgill says they “tag team” foster parenting responsibilities now more than ever. He also gives back to livespecial.com 2020-21

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QUILTERS church and community programs for children, including teaching a kids club once a week, camping with Royal Rangers and doing derby cars with boys and girls. “I’ve watched him grow and become more in touch with the kids since he is home,” Sturgill says. “I used to say, when I started, that I wanted to make a difference in a child’s life, but they have taught me — to be flexible and open minded, and that I am human,” Sturgill says. “They make a difference in my life. Sometimes you have to parent children differently because of their needs. Sometimes you have to switch up techniques. All of my children learned from each other.” She urges others to consider fostering if they are able, saying, “There is always a need for foster parents for all ages.” Fostering requires licensure and training. According to the Lake County Department of Job & Family Services, children come into the custody of the department due to a crisis resulting in the child being a victim of abuse, neglect or dependency. It is the department’s philosophy that children grow better in families; therefore, if the child cannot be placed safely with a relative, the primary goal is to find foster care providers who are willing to provide temporary care to children while their families are in crisis and until reunification with a family member can occur. If reunification is unable to occur, children would become eligible for adoption and either remain with their foster parents, who make a permanent commitment to care for the child, or an adoptive home is secured. For information about foster parenting and adoption in Ohio, visit fosterandadopt.jfs.ohio.gov or your local county’s department of job and family services. For more information specific to Lake County, visit lakecountyohio.gov/lcojfs.

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SEW COMFORT

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he Fidget Quilt Circle of LifeSpring Community Church in Valley City has hand made more than 150 quilts for children and adults with special needs since 2019. Diane Members of the Fidget Circle of LifeSpring Community Church Phelps coordinates members of show off their fidget quilt creations with Dr. Kaye Stanley Bryson the group to fulfill requests from (top left), MCBDD director of Children’s Services. organizations, caregivers and (Photo Courtesy of MCBDD) other loved ones for blankets free of charge, bringing comfort “It began with our Ladies Ministry to all ages. at church,” she says. “Every month, we Originally developed to help sooth do an outreach activity or event. We seniors with Alzheimer’s disease and looked online for ideas and found fidget other forms of dementia, fidget quilts quilts. Some of the ladies like sewing have been found to benefit people with and others did not. For those of us who autism spectrum disorder, attention enjoyed it, we wanted to continue. It deficit disorder, and other developmental kept bugging us — we wondered what disabilities. They offer a safe, handselse we could do with this. Initially, they on source of comfort to replace other were for Alzheimer’s and dementia, behaviors, such as tugging at clothing then we found so many other places and rubbing hands together, while where they could be used, particularly also promoting fine motor skills and children with special needs.” coordination. The quilts allow their In addition to many individual owners to occupy their hands during caregivers, the group has delivered times of stress and frustration, or when quilts to the Medina County Board of they are restless or anxious. Studies Developmental Disabilities (MCBDD) have shown that fidgeting can calm and Children’s Services Department for reduce anxiety. children involved in the MCBDD’s Early The blankets are typically 18 by 20 Intervention, Windfall Preschool and inches and fit easily into the lap of a child Windfall School programs, as well as or adult. They contain interactive and Life Care Center of Elyria for residents manipulative materials such as zippers, with dementia or Alzheimer’s disease, Velcro flaps, ribbons, buttons, snaps, Medina County Library, and Cleveland pockets and small toys or mementos Clinic Emergency Room in Brunswick. (e.g., a house key) along with different Upon receiving a donation of 18 textures like flannel and faux fur sewn quilts, MCBDD Children’s Services directly into the fabric to provide hours of Director Dr. Kaye Stanley Bryson said, comfort and soothing activity. “Crunchy” “We are so amazed at the generosity fabrics, rattles and beads add additional of these women. We cannot thank sensory benefits. The quilts are washable them enough for such a thoughtful and and versatile with the power to awaken generous contribution to the children old memories. and families who receive our services.” While the Fidget Quilt Circle is a Phelps says, “It’s a very special service ministry of LifeSpring’s women’s feeling when you take them out; you group, it is not limited to the church. know they are bringing comfort and The quilting circle is its own entity and some peace, not only to the child or consists of six core members from various adult, but to the caregiver, because communities who meet regularly, with a they help to keep people busy. They couple others who assist occasionally. are used in homes and also reserved “We are all older,” Phelps explains. “I for times that pose challenges — for can’t do a lot of the physical volunteering instance, when people go out in the car I used to, but I can sew.”


or to doctors’ appointments.” A couple of made-to-order quilts were particularly special to Phelps. “Neil’s quilt was the first children’s quilt we made and my first realization that these could be used with children,” she says. “His mom told us about his love for trains. There was also a gentleman in the Marine Corps — a veteran with Alzheimer’s. When I laid it out to present to him, he stood up and saluted. It still gives me chills that he recognized what was on it and was so moved. “We have several women who make the base quilt to a specific size, then additional members add the embellishments,” Phelps adds. “We meet in person once a month to discuss plans and share ideas and materials, as well as recipient stories. We bring in our quilts and talk about what worked, new techniques or supplies we found, and how to do things. During the COVID-19 pandemic, the group continues to connect via phone or email while Phelps makes deliveries or meets members at the church, practicing proper social distancing, to collect and distribute materials. “We have found such a need for the quilts, and it keeps growing,” she says. With growing interest comes the need for more materials and helping hands. The group receives donations of materials and members also compile some themselves. “We received an offer of buttons, lace and more from a family member of a seamstress who passed away,” Phelps says. “We are always looking for more people to join us. We provide directions, patterns and materials. Most of the work is done in your own home at your own pace. There are not a lot of meetings, you can do it anywhere, anytime and with anything — it’s up to your imagination!” The group is open to anyone of any age and ability, adds Phelps, saying, “If you can sew on a button, you can make a fidget quilt with us.” If another organization wants to start a similar quilting circle, Phelps is happy to share her expertise and offers her group as a model. To request a fidget quilt or donate materials, visit fidgetquilts.lifescc.net or email Phelps at fidgetquilts@lifescc.net.

Eliana Turan, development director, LGBT Community Center of Greater Cleveland.

COURAGEOUSLY ADVOCATING FOR ALL

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liana (Ellie) Turan is development director for the LGBT Community Center of Greater Cleveland and an active member of Cleveland’s civic community. As a self-described civil rights fighter, transgender woman and member of a minority group not well understood, she advocates for ways to eliminate discrimination and stigma, while promoting awareness and understanding, especially in the workplace. Through her writing talents and philanthropic involvement, she courageously helps those most at risk in the community. Turan is an ally to the LGBTQ+ and special needs communities alike. As a collegiate tutor for Lorain County Community College, she supported students with autism and various learning needs. She describes the individuals she has worked with on the spectrum as “free thinkers and innovators who are creative and true to themselves.” There are additional considerations when LGBTQ+ and special education needs intersect. “The intervention should focus on the disability aspects to get needs covered as part of disability treatment, as there are little protections for the LGBTQ+ community under law,” according to local special education attorney Kerry Agins, Esq., of Agins & Gilman, LLC. “We are seeing a lot of need, particularly for social emotional supports to be created as well as safe places, safe people and working through self-esteem issues. That is primarily where we see the need to focus intervention,” she says. “I think corporate culture needs to look at nonconformity — whether that be with gender, social interaction, thought or anything — as a positive, a great asset for any organization or community,” Turan says. “We need to start building a culture of curiosity and acceptance — a collective mindset of different people in boardrooms and classrooms — where being different is valued and welcomed. Meeting and interfacing with individuals with different life experiences helps us grow and advance. We are better together.” Turan stresses the importance of finding support and making connections. The American Academy of Pediatrics provides educational information, including definitions, at healthychidlren.org and guidance for parents and clinicians through a gender-affirming approach. For additional LGBTQ+ specific resources and support, including information on programming and events, visit lgbtcleveland.org.

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CREATING A SAFE SPACE FOR ALL

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risten Pepera and Lisa Pepera are licensed professional clinical counselors who are passionate about supporting the LGBTQ+ youth community. They believe everyone deserves a place to feel safe and be themselves. Their nonprofit, Colors+ in Fairview Park, offers mental health services for anyone age 6 and older, as well as youth center programming for LGBTQ+ youth and allies age 10 and older. Kristen is executive director and Lisa, a Fairview Park native, is clinical director. While providing intensive mental health services and outpatient work in various residential, school and home settings for nearly a decade, the couple saw a gap in services for the LGBTQ+ community. “There was nothing specific for them,” Kristen Pepera says. “It was something youth were asking for, but there were barriers, like transportation to access support. We decided we wanted to do something to address the need in the future.” Personal experiences also helped the couple realize what was important to them and how to give back. “After our first son was stillborn and we had our second son, we wanted to be able to be at home for him more and create an environment for youth,” Pepera says. They opened Colors+ in 2019. “Through a holistic mind and body approach, we try to help youth strengthen their sense of self and community to feel healthy and empowered, so they can grow as individuals and give back to themselves and the community in general as a whole.” Pepera says the intersection of the special needs community and LGBTQ+ community is undeniable. Research shows people in the LGBTQ+ community are more likely to have a disability than the general population. An estimated 3-5 million LGBTQ+ people have disabilities.

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More than one-third of LGBTQ+ adults identify as having a disability, and they face unique challenges, including limited access to services, bullying and exclusion, barriers to employment, discrimination and more. Pepera notes invisible disabilities like mental health (depression, anxiety, PTSD, etc.), autism, ADHD and dyslexia add another layer of potential challenges and fear about disclosure. According to Respectability.org, “the consequences of stigma, bullying and rejection can literally be life and death.” The Trevor Project reports LGB youth are almost five times as likely to have attempted suicide compared to heterosexual youth.

Kristen Pepera LPCC-S (right), and Lisa Pepera, LPCC-S, directors of Colors+ Counseling, LLC.

Pepera highlights the organization’s National Survey on LGBTQ Youth Mental Health (2019), which provides insights into the challenges these youth across the country face every day, including suicide, feeling sad or hopeless, discrimination, physical threats and exposure to conversion therapy. The landmark study found 39 percent of LGBTQ youth and more than half of transgender and non-binary youth report having seriously considered suicide in the past 12 months. “Within the last year, almost three out of four youth have felt sad, hopeless or depressed, isolated from peer groups, afraid to disclose, being bullied or not accepted at home and school,” Pepera explains. “Not ‘coming out’ for fear or worry of pushback leads to suicidal thoughts,

too. We talk with youth, and they are very open. Fifteen years ago that would not have been the case, but now they are talking about it together and sharing in a way that is healthy, knowing they are accepted and loved here. “One of our biggest concerns is mental health and the autism spectrum,” Pepera adds. “We see a significant overlap in this community with the transgender and gender expansive community.” These youth have found a safe space in Colors+. “For the individuals we have on the spectrum,” she says, “other youth don’t treat them like they are different or have a disability. Rather, it is one more personality trait — one more part of the person we accept, respect and protect. We talk about loving ourselves and self-esteem.” All Youth Center programs are run or supervised by a mental health clinician for a layer of protection and expertise if they need help or specific resources. Programming includes weekly evening drop-in times for ages 11-19. Parent permission is not required; however, they ask some basic questions at sign-in. “Youth can socialize and share experiences, eat, play games and create art. They value interacting with one another,” Pepera says. All events are free with the exception of the Movement Mondays partnership with an area fitness studio ($5 per visit). In the future, the Peperas hope to offer gender expansive play groups for ages 10 and younger to give every child an opportunity to meet someone similar in identity and for parents to meet other parents. A growing number of youth are utilizing Colors+ services regularly. Many walk or bike to the facility. While the majority are from Fairview Park and Lakewood, others come from Rocky River, Lorain, Elyria, Amherst, North Olmsted, Olmsted Falls, and as far as Valley View and Brunswick. What began with two or three youth at a time has steadily increased to an average of between seven and 11 children coming to drop-in hours each week. In 2019, from April to


December, the center received 160 visits from almost 50 children, and this year most are repeating and coming back in increasing numbers. The group quickly outgrew its initial 250-square-foot space and now utilizes one more than 3.5 times larger. Colors+ has continued to deliver mental health counseling services to clients and youth center programming during the COVID-19 pandemic. “We use a telehealth platform that is HIPAA compliant and secure for video calls. All but one client decided to continue,” Pepera says. “Many of our youth center programs became virtual. Youth ages 11-19 can log in to a secure chat room, and they can use video as well. Dungeons and Dragons events, for example, went from once to twice a month. It presents youth an

opportunity to role play personality traits and characteristics to grow confidence in real life.” Pepera recognizes additional challenges for the LGBTQ+ and disability communities during stayat-home orders and physical social distancing. “During these times, some kids have to ‘go back into the closet,’ so to speak, if they feel it is not a safe environment and parents are not accepting or they have no access to data plans, internet or school to connect to supports,” she says. Pepera offers valuable advice to parents and family members: “I recommend four things: talk and listen, provide support, stay involved, and be proactive. Parents always ask if they are doing enough. Research shows that

when even one adult uses the right pronoun with them, the instance of suicide is cut in half. It’s not what you are doing; it is that you are there. They feel safe to talk and be themselves.” Visit colorsplus.org, call 330-5295667 or email kpepera@colorsplus. org for more information about mental health services, individual or parent support groups, and other youth programming. If you or someone you know is thinking about suicide and in need of immediate support, call the TrevorLifeline for LGBTQ+ youth at 1-866-488-7386 or select TrevorChat online to connect with a counselor. You also can reach the Ohio Crisis Text Line by texting “4hope” to 741 741. Angela Gartner contributed to this article

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Planning Now

For Future

TRAVEL Whether it’s fun in the sun or R&R in the woods, family time is the best time. By Heather Tunstall

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amily vacations are a time for exploration, discovery and quality time together — and planning is half the fun. Planning in the next months or years might look a little different for all families. However, future travel doesn't necessarily have to take a backseat — sometimes even going out of town is needed. Also, there are many ways to safely travel, whether going on a day trip, renting an RV or even heading to a local outdoor attraction. Safety and continuity of care and routine are important for all families traveling with kids, but especially those with special needs, and a lot will depend on the unique needs of each child, according to Jennifer Brady, developmental specialist at the County of Summit DD Board and mother to a child with special needs. “Travel with any child can be tough, but creating memories with family is so important and fairly easy to do with a little planning,” she says. “The trip doesn’t have to be a big one; start small and more local to see how your child does. Remember to think how children will react to being in a car for long periods of time. If you know your child will hate that, maybe plan something closer to home.” A vacation can be anything that your kids will love — including something as simple as taking walks somewhere beautiful or swimming in a hotel pool.

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Think about what is best for the whole family and remember that children often think things that are simple or out of the ordinary are great fun. “Sometimes, simple is best,” Brady says. “Staying in one location and not moving around a lot during your vacation can be good for children that are resistant to change. For instance, staying at a campground would allow multiple activities while sleeping in one spot. Vacations to family members’ houses or with your extended family is another great way to get out of town and still have access to support.” Once you’ve got a destination or activity in mind, it’s time to start thinking about the details.

Give it Time

With travel planning, it's a good idea to think ahead — and even provide something families can look forward to an upcoming trip. “Parents with children who have special needs should focus on planning as much as they can well in advance of their trip,” says Helena Farkas, social

worker at Milestones Autism Resources. “Taking the additional time to plan can make for a successful trip and reduce stress for everyone. The more you prepare ahead of time, the more likely you are to have a smooth time away as a family.” Depending on your child’s personality and how they prefer to process information, involving them early in the planning can help to build anticipation and excitement, and ease any anxiety about leaving home. “If you have a child with sensory issues or perhaps one that has difficulty with changes in routine, it is helpful to prepare the child as much as possible beforehand,” Brady says. “I have helped parents prepare little picture books of what to expect on their travels, like who they are going to see, where they are going, etc. Kids can even take these printed books with them during the trip as a reminder of what will be happening.” Brady recommends searching sites such as summitdd.org for “social stories” or “social scripts” to find good examples of lead-up activities and conversations. In addition, a Google search returns easy, basic stories you can print to help explain what is going to happen if this is the first time you’ll be taking your child on a vacation.


Research Your Destination

Before you start booking accommodations, dig into the facilities and the surrounding areas to make sure you’ll have access to everything you need. Consider booking accommodations that provide a minifridge or full-size refrigerator so you can order familiar groceries from a local store for easy meals during your stay. The type of accommodation will be important for many families, as well. “If your child has a physical disability, accessibility will need to be forefront in your mind,” Brady says. “How will you be able to get in and out of places and where will you be able to change a diaper? Will a rental house be able to support equipment?” Make sure you are staying near appropriate medical facilities if your child has certain medical needs. Similarly, consider having necessary prescriptions filled by national pharmacy chains to make it easier to transfer or fill them away from home. “Plan where hospitals and pharmacies are along your route and once you get

to your destination,” says Haley Dunn, teen/adult manager at Milestones Autism Resources. “Be mindful of medication schedules and try to stick with them.”

Tap Into Resources

To help with planning, there are a number of resources available that are tailored to families with special needs. “If your child has a developmental specialist, an RSS (referral support specialist) or an SSA (service support administrator), they are a good place to turn,” Brady says. “Not only do we have the background and knowledge, but many times, we’ve known your child for quite a while and can help work through parts of a trip that may be more challenging.” Check in with your child’s doctor about where you are planning to travel, how you plan to get there and what you might need in order to keep your child healthy on your trip. You should have their current medical needs, medications, and health plan documented and kept in an easily accessible place in case of emergency.

There are many certified travel agents who have experience with arranging special needs travel. You can ask if they can coordinate “accessible travel,” if needed. Some companies exist solely to plan and facilitate trips for families with special needs, including Beyond Our Boundaries, a Canton-based recreation service company for adults with developmental disabilities. For older children and adults, organizations such as this are great resources and options for traveling and encouraging an active social life. And don’t forget to get a little help from your peers. Facebook parent support groups can be great resources for families, giving you local tips and information from parents in the area to which you’re traveling. There also are a number of travel clubs, which help provide trips. Finally, have fun. In these uncertain times, a vacation can mean going away, but if you can't get away now, plan. Also, try some of the virtual travel opportunities as a family. It's important, and the memories you make of the time spent together exploring will last forever.

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

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SPECIAL ADVERTISER LISTINGS Achievement Centers for Children Since 1940, the Achievement Centers for Children has helped children and adults with disabilities, and their families, achieve their greatest potential. The agency provides comprehensive, high-quality therapy, education, recreation and family support for individuals of all ages (special focus: children birth through age 5). Achievement Centers’ Camp Cheerful in Strongsville provides an accessible environment to help children and adults with physical, developmental and sensory disabilities grow in a traditional camp setting. Virtual/telehealth services offered. achievementcenters.org ADA Cleveland

ADA Cleveland seeks to celebrate the ongoing legacy of the Americans with Disabilities Act. It leads in ensuring access, increasing awareness, promoting independence and providing opportunity. Members engage in the community as advocates for positive change. Starting in July 2020, ADA Cleveland is hosting a call for access to honor 30 years of the ADA through interactive webinars, activities and advocacy. adacleveland.org Allison Rose Foundation Dedicated to changing the lives of food allergy families through education, awareness, research and advocacy, the Allison Rose Foundation, in collaboration with its medical advisors, developed a physician-driven, evidence-based, food allergy curriculum. Designed for those with or without food allergies, it’s proven to be a lifesaving lesson for students, faculty and staff. allisonrosefoundation.org 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 its Autism Response Team at 888-288-4762 or visit autismspeaks.org for information and resources.

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Beck Center for the Arts Each participant in Beck Center’s Creative Arts Therapies program receives attention that is individualized with personallydesigned goals tailored to meet his/her needs. Staffed by board certified arts therapists and professional adapted instructors, Beck Center’s program is the first of its kind in the state of Ohio. 216-521-2540 x34, beckcenter.org

Eisner Gohn Group, LLC

Beyond Words: Music & Dance Center Beyond Words: Music & Dance Center offers music therapy, adapted music lessons, adapted dance programming, virtual music and dance classes, and summer camps for children with special needs and peer models. Its newest membership program, for families with children ages 2-5, offers the convenience of home programming with the expertise of a music therapist. Beyond Words has studios in North Royalton, Medina, Avon, Independence and Highland Heights. Call 440230-6100 or visit beyondwordscenter.org for registration.

Galvin Therapy Center

Cleveland Hearing & Speech Center For nearly 100 years, Cleveland Hearing & Speech Center has been the premier provider of programs and services to those who are deaf or hard of hearing, have difficulty speaking, or have other language or literacy delays and disorders. Its vision is a community where every individual communicates effectively. Call 216-2318787 or visit chsc.org.

Help Me Grow

Cuyahoga County 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 216-2418230 or visit cuyahogabdd.org. Education Alternatives

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. eisnergohngroup.com The mission of Galvin Therapy Center is to make a positive impact on the lives of children and families. It provides a broad range of therapy, behavior and intervention services for infants, children and young people at its Avon and Warrensville Heights locations. By meeting children where they are, the center’s therapists create a positive experience that is just right for their growth and development. galvintherapycenter.com Pizza Box Flyer Example

Help Me Grow is a system of supports for pregnant women, caregivers with new babies, and families with young children with developmental delays and disabilities. Call: 216-930-3322, 440-389-3322, or 1-800-755-GROW, or visit helpmegrow.org 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 staff 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 needs. Rooted in the principles of the Sisters of Notre Dame, the schools welcome all faith traditions. juliebilliartschool.org

Education Alternatives provides special education services to hundreds of K-12 children in eight sites throughout Northeast Ohio. EA uses a trauma-informed approach to treat intensive behavioral challenges and incorporates the ACE scores of each child into their individualized plan. Children receive both group therapy and academics and also may access individual counseling, behavior supports and psychiatry. REACH Behavioral Health provides the therapeutic services in each Education Alternatives site. easchools.org

1,200-Plus providers and resources in Northeast Ohio. Visit LiveSpecial.com

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SPECIAL ADVERTISER LISTINGS Lamplight Counseling Services Family is at the heart of everything you do. Lamplight Counseling Services’ goal is to help your family improve communication, solve problems, understand and handle difficult situations, and create a happier home. It uses evidence-based, creative individual and family therapy services to help foster change. Clients young and old learn to manage emotions, reduce conflict, increase empathy and improve self-esteem. Independence location: 6133 Rockside Road, Suite 403, 216-455-5571. Medina location: 323 S. Court St., Suite 210, 330-331-5800. lamplightcounseling.net, info@lamplightcounseling.net

Solomon, Steiner & Peck A 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. Offices located in Mayfield Heights, Independence and Westlake. 216-7650123, ssandplaw.com Steel Academy

The Steel Academy is a free public, nonprofit, community school for students in grades sixth through 12th who learn differently. Many of the students have learning disabilities caused by ADHD, Asperger’s or other disorders on the autism spectrum. All struggle Medina County Board of to learn in mainstream educational systems. Developmental Disabilities The academy inspires students through unique The Medina County teaching methods that encourage lifelong ShoeBoard s arofeDevelopmental n't one-sizelearning -fits-and allopen . doors to the future. The Steel is the Academy EducaDisabilities tion sh ouldn't be , eitishgoverned er. by Steel Academy, Inc. community resource responsible for connecting, and operated by The Educational Empowerment coordinating and funding services for individuals Group. Accredited and sponsored by the Ohio of all ages with developmental disabilities. They Department of Education. 330-633-1383, help with everything from early intervention steelacademyedu.org and education opportunities for children to Summit County Developmental employment and community inclusive living for Disabilities Board adults so they can live, learn, work and socialize in Summit DD is the resource the community. mcbdd.org that makes meaningful Milestones Resources connections for more than Is Autism your ch ild struggling to keep up? 5,000 children, teens Does your son or daMilestones ughter feAutism el overwhelmed in class? Resources improves and adults with developmental disabilities in the lives of individuals Summit County. Those connections become part Tree of Knowledge Learning Academy offers a on the autismafternoon spectrum byeducation educating, coaching of a person’s journey. With each connection, Jon Peterson and Autism unique, small-group program Scholarship funding - a program tailored your community child's needs. and connecting thetoautism with youraccepted. network grows, helping you on your path to evidence-based information. Providing an annual becoming your own strongest advocate. Summit • Highly qualified teachers and therapists • Commonautism Core-aligned reading,amath, science andconsultations social conference, free helpdesk, DD believes that people have the right to direct ii.studies curriculum Need help • Speech,and OT, training PT, music—therapy and social skills support and a website with over 1,400 their own journey. Its service coordinators are getting approved? ii.available We can help you navigate the resources Milestoneslife is here here to assist you in creating a self-directed plan • Hands-on activities—incorporate skillsto support application process. • Servicing grades 1-6 individuals at every age, stage and ability. For that meets your goals and builds a team around • Conveniently located in Cleveland Heights Already approved? more information, visit milestones.org or call the youalways to help set you up for success. 330-634You can change or add 12:45-3:30 M-Th • 1855 South Taylor Road providers. Oursummitdd.org team members free autism Helpdesk at 216-464-7600 ext. 200. 8000, are happy to assist you! Corner of South Taylor and Bainbridge Roads, PSI Affiliates, Inc. entrance on Bainbridge

For more than four Bonus money math skills prograPSI m! has decades, Contact us for details. been committed to Call today to learn more: P: (216) 851-2221meeting the health Press 1and for the Cleveland Heights then ext. 260 educational needsoffice, of children in Ohio’s E: info@treeofknowledge.us schools. PSI’s psychological, health, speech and educational programs now serve tens of thousands of children each year. psi-solutions.org

difficulties. The academy strives to help all children by building on their strengths and empowering them to overcome obstacles. 216-851-2221, press 1 for the Cleveland Heights location, then ext. 260. info@treeofknowledge.us UCP of Greater Cleveland The mission of UCP of Greater Cleveland is to empower children and adults with disabilities to advance their independence, productivity and inclusion in the community. UCP serves individuals with a broad range of disabilities through two Centers of Excellence: LeafBridge for Children and OakLeaf for Adults. Visit ucpcleveland.org or call 216-791-8363 to learn more. Youth Challenge Youth Challenge provides free adapted sports and recreational activities to children and young adults with physical disabilities, ages 4-25, and their teen volunteer partners, ages 12-18. YC offers hundreds of year-round programs and accessible transportation to young people from six counties in Northeast Ohio. 440892-1001, youthchallengesports.com Zane’s Inc.

Zane’s Inc. provides resources for children and adults with special needs. Established 12 years ago, Zane’s purpose was to fill in the gaps between service agencies and homes that often fall short of the amount needed to make an impact for someone with a disability. Zane’s integrates community outreach, education and financial assistance to help families overcome these obstacles and become more informed advocates for their loved ones. 330-677-ZANE (9263), zanesinc.org

Tree of Knowledge Learning Academy TOKLA: Giving All Children the Commitment They Deserve. Since 1999, Tree of Knowledge Learning Academy (TOKLA), a premier non-profit service provider, has been helping children succeed. It supports children in various settings, including homes, hospitals and schools. TOKLA services students struggling with learning and physical disabilities, behavioral challenges, chronic or terminal illnesses, and home or family

Interested in copies of LiveSpecial for your school, organization or business? Contact wendy@livespecial.com

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Ask Nessa

What are the Parents’ Rights as Their Child’s Advocates at School?

C

indy Glazer, a special educator, interviews Nessa Siegel, retired attorney and well-respected expert in special education law, about advising parents as to the rights of children with disabilities within the school environment.

school personnel can be intimidating. Shouldn’t parents assume that the school personnel are the experts?”

NESSA: “Who are the experts? IDEA ensures that it considers parents as experts in regard to their child’s CINDY: “Nessa, you are an expert education. One section of the at advocating for children who law, as well as case law, addresses have not received the supports and ‘meaningful participation’ for NCJW/ClevelaNd: services they require through the parents and the importance school district. As a retired public they play as experts. Parents THE NCJW WOMAN: educator, I’d like to think that these should remember their out-ofNessa G. Siegel school expertise and draw on cases are few and far between, but I am fully aware that they occur private therapists to be part of all too frequently. I would like to the evaluation and IEP teams. “NCJW/Cleveland identifies ask you some questions that will These private therapists, doctors, a need in the community “I joined because I believe in assist parents as they confront evaluators, and NCJW/Cleveland’s helpsspeech fill it. therapists, work. these issues. What are the parents’ PT therapists… are experts as Education. rights as their child’s advocates? If well asAdvocacy. school personnel. These LIVESPECIAL.COM Community Service. parents think their child may have WendieCindy experts attending meetings serve Glazer Forman Ellen Leavitt Cindy Glazer a disability, they need to educate That’s why we’re members as the parent support to request of National Council of Jewish Women.” themselves before they contact the school educational services for their child. That’s why I volunteer with the National Council or an attorney.” procedures are followed correctly, of Jewish IfWomen.” parents can get an independent NESSA: “The Individuals with Disabilities Celebrate literacy at the Annual Meeting, June 3 educator evaluation (IEE) and get the Education Act provides parents withMembership starts at $45 school district to pay the evaluation numerous rights. The most important right 216.378.2204 forRemember, tickets ncjwcleveland.org fee. if you do not ask for a provides that parents are equal members, www.ncjwcleveland.org 216-378-2204 needed service, your child will likely not along with school members, of the school receive it. All educational services are teams that determine a child’s right to a based on the needs of the child.” free appropriate public education (FAPE) and thus special education services. CINDY: “School districts can be These rights are outlined in the act itself. reluctant to offer services because Parents need to be familiar (at the least) of lack of staff. Is that a reasonable with the sections delineated as procedural explanation? Can a parent insist on safeguards, evaluation requirements, and all accommodations or other items to be the sections addressing the IEP document included on the IEP or 504 plan?” and meetings. In addition, at the end of NESSA: “School personnel cannot the act there is a section of questions that deny services based on staffing or past specifically comment on parents’ rights. procedure. Rather, accommodations The internet is the key to the parents’ on IEPs and 504 plans are based on education. The act, Special Education the needs of the child. Parents can Laws of Ohio, and the Ohio Administrative request that data be taken in the Code are all available through the internet. classroom to prove a child requires Moreover, Googling key words of IDEA extra time for testing, a quiet room such as positive behavior plan, placement for testing, or personnel to help with determination and related services will behavior issues in the classroom. provide parents with pertinent information. Parents should use their outside Parents must educate themselves to be experts to write reports or attend the effective advocates for their children.” meetings to characterize their reasons CINDY: “Parents often are unsure of how for recommending an accommodation much to say at meetings. The numbers of on either the IEP or 504 plan.”

FaCe To FaCe

FACE TO FACE

Be the Face

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livespecial.com 2020-21

CINDY: “How can a parent ensure that the 504 or IEP will be followed when a child is transitioning from elementary school to middle school?” NESSA: “When a child is transitioning from one school to another, one school year to another, or one district to another, a transition plan should be developed. The best way to develop an adequate plan is to have personnel from the present staff and special educators meet together with next year’s staff, including special educators. This meeting and an appropriate plan should be developed before the transition takes place. The best time is at a final IEP meeting for the present year or before school begins in the fall. Parents can request an IEP meeting to address transitioning, specifically.” CINDY: “How can a parent help their child to become their own best self-advocate? At what age should the child be attending the IEP or 504 meetings? I found that it is often helpful for students to know their accommodations so they can remind a teacher or tell a new teacher or a substitute.” NESSA: “This is the most difficult question to answer. Much depends on the age, ability and desire of the student in question. There is no single answer. Parents must make a decision based on the child’s maturity and emotional development. Research has shown that the earlier a child can speak about his/her disability with openness and confidence, the more accepting he or she can be of their disability. Trying to hide or deny a disability only causes more angst. I speak from personal experience.” Cindy Glazer, M.S.Ed., served as a special educator for 27 years and continues to consult parents of children with special needs. Nessa Siegel, Esq., graduated from Cleveland Marshall School of Law after a career as a special educator and practiced in school law for 25 years.


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