Important Resources and Professional Services
SPECIAL NEEDS GUIDE
SPECIAL NEEDS GUIDE
Anthony S. Danna, Esq. CERTIFIED ELDER LAW ATTORNEY *
SPECIAL NEEDS PLANNING MEDICAID ELIGIBILITY & APPLICATIONS ASSET PROTECTION ESTATE PROBATE / ADMINISTRATION GUARDIANSHIPS WILLS & TRUSTS ELDER PLANNING _______________________________________
406 Forest Avenue | Staten Island, NY 10301 | 718-273-0300 | inquiry@dannalaw.com
Visit our website: dannalaw.com *Certified Elder Law Attorney by the National Elder Law Foundation, which is not affiliated with any governmental authority. Certification is not a requirement for the practice of law in the State of New York and does not necessarily indicate greater competence than other attorneys experienced in this field of law.
SPECIAL NEEDS GUIDE
MARVIN’S CAMP A Summer Program for Children with Special Needs
BY KARA ROCHE
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Kara Roche is the Marketing & Communications Coordinator at the Joan & Alan Bernikow JCC of Staten Island, where she focuses on camp, cultural arts, and music.
his summer, children across the island will head to summer camp and spend their days making friends and having fun in the sun. All children— regardless of ability—deserve the same opportunity to have an unforgettable summer camp experience. That’s why the Joan & Alan Bernikow JCC of Staten Island started Marvin’s Camp for Children with Special Needs. Marvin’s Camp, located at the Henry Kaufmann Campgrounds, provides an educational, creative, social and safe environment for kids and teens with developmental disabilities. Led by highly experienced staff with degrees in special education, social work and school psychology, children at Marvin’s Camp participate in a wide array of fun and enriching activities. Campers enjoy swimming, boating and sports, along with hands-on activities like crafts and woodworking. Low staffto-camper ratios ensure that each child receives excellent care and attention. Last summer, the Marvin’s Camp opening was delayed due to a decision made by the Office for People With Developmental Disabilities (OPWDD). The JCC fiercely advocated for the OPWDD to grant permission for it open midway
through the summer so that campers of all abilities could return to the campgrounds and enjoy the summer. This year the JCC hopes to give the children of Marvin’s Camp a full summer experience. They had no positive cases among the staff nor the 700 campers across their camp programs at nine locations on Staten Island. Their goal is to serve the special needs community all summer long. “Marvin’s Camp is so special to us and we look forward to it all year, just like our campers do. We know that many of them are feeling isolated and lacking some of their usual respite services, so it’s more important than ever that we’re here to offer them the support they need. We can’t wait to see the smiles on their faces when we welcome them back to camp this year,” said Orit Lender, CEO of the JCC. The JCC is currently accepting registrations for Marvin’s Camp for Children with Special Needs. You can learn more about the camp at camp.sijcc.org/marvins-camp.html. To register, contact Laura Irizarry at LIrizarry@sijcc.com. The JCC also offers an inclusion program in its traditional camp for those who would benefit from it. An interview is required for inclusion enrollment.
SPECIAL NEEDS GUIDE
SPECIAL NEEDS GUIDE
Raising My Twins on Opposite Ends of the Spectrum BY CELIANN NEBER
Celiann Neber lives on Long Island with her husband and twins.
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y twins were never in the same play group, class, or even grade. They were together only in the womb, the NICU and, later, our home. They were on complete opposite ends of the spectrum. Why couldn’t they meet somewhere in the middle? I often asked myself. Born 16 weeks premature, my baby girl had her struggles, but I knew she would prevail. My instinct was right; she did. Relentless in my efforts to somehow change the course of his outcome, I knew my baby boy’s struggles would be permanent. And they were—a mother’s intuition.Now, 23 years later, I still wonder what life would have been like. Seeing neurotypical twins is a reminder of what they (and honestly, I) did not have. It’s a reminder of everything that was missed, how nothing was typical—and, ultimately, how it has affected my daughter. What would it have been like to bring my healthy twins home, memorialize their milestones in their baby books, and open our home to visitors wanting to celebrate them? What would it have been like to take my babies to the store or a friend’s home, to smile rather than cry, to savor each moment rather than worry about the next? What would it have been like to experience my babies developing typically? What would it have been like for my baby girl to have a playmate, a best friend, a partner in crime—to grow up like I did with my brother, who is 15 months older than me? What would it have been like for her to grow up without the constant flow of nurses and therapists in our
home, visits to the hospital, or doctor and therapist appointments? What would it have been like to not worry about my son’s future—or about my daughter’s, for that matter, as the only sibling of a brother with multiple disabilities? What would it have been like to not feel guilty? When they were 10 years old, I drove the three of us home from yet another doctor’s appointment—an appointment I was hoping would bring a different diagnosis for my boy. It was during that car ride that I realized my daughter already understood what her future was going to look like. “Mommy...do you think Matt will ever get married?” she asked. “I’m not sure, why?” “Well, while we were in the doctor’s office, there was something on TV that said kids like Matt will probably never get married or have children.” I held back tears. “It’s okay, Mom,” she said. “He will live with me when you and Dad can’t take care of him anymore.” “Oh, Sweetie,” I said. “I know you love your brother. But you will have your own life and your future husband may not want your brother to live with you.” Without hesitation she said, “I wouldn’t marry anyone that didn’t want Matt, Mom. We’re a package. We’re twins!” In these 23 years, every one of my daughter’s accomplishments has been met with celebration and happiness—but deep down those same accomplishments were always bittersweet for me. She felt it, too, because she wanted her brother to be able to accomplish the same things. I knew she felt it, and it makes me sad still.
She has watched me move through this journey, and she wants me to be wholly happy—not the half-happy I am because I wish her brother could be beside her. She gets it, and she always has. I sat down to write this essay about what it was like to raise twins when one has a disability. But, ultimately, it’s an essay about my daughter. My son is the happiest boy. His innocent smile is the most beautiful thing. He is our light. But my daughter understands and feels more than any mother would wish for her child. It’s been a long and complicated path, and yet despite this, or perhaps because of this, she has grown into an amazing young adult. Her journey, our family’s journey, has grounded and humbled her, given her strength and understanding, and taught her compassion and kindness firsthand. One thing I won’t have to question is who will take care of my son when my husband and I aren’t able to. My daughter chose to take on the responsibility of making sure her brother is safe in the future. That is a responsibility she has understood for a long time, though it’s not what I hoped for her future. Despite these worries, I wouldn’t change my twins for anything. The reality of life and her future responsibilities can seem overwhelming, but my daughter will approach all of it with the same compassion and strength her brother has helped her learn from the beginning. My twins will always be on opposite ends of the spectrum. I will always worry about them equally. But they give light to each other. And while my intuition about my son was correct, it was also correct about my daughter. She will prevail, she will keep him safe, and she will be okay.
SPECIAL NEEDS GUIDE
AHRC NYC James P. Murphy Staten Island Prep
At the James P. Murphy Staten Island Preparatory School, we are proud to provide a rigorous curricular program combined with ABA programming to meet the needs of students with disabilities from ages 3 to 13. Our curriculum includes ELA, mathematics, science and social studies with the use of the Next Generation Learning Standards modified for our students to access instruction. Our school is excited to provide on-site related services and a social emotional learning emphasis for each student in our building. Small classroom ratios and specially trained staff allow for an individualized experience and approach to learning.
AHRC NYC JAMES P. MURPHY STATEN ISLAND PREP 23 Summit Street • 10307 • 718-285-9377
christopher.uccellini@ahrcnyc.org
Milestones in Motion Physical Therapy Wellness
Milestones are always in motion. Our mission is to educate parents what motor milestones are and how to achieve them. We offer specialized, “parent & me” style wellness classes focused on a particular developmental skill. For example, if your child is around 7-11 months, you can take our crawling class. Available courses include 4th trimester/rolling, crawling, and walking. We also offer one on one, individualized physical therapy services in the comfort of your own home or virtually. For FREE tips on development, check out our Instagram. Babies are amazing, we will show you how. milestonesinmotionptw.com facebook.com/milestonesinmotionptw instagram.com/milestones_in_motion_ptw
denise@milestonesinmotionptw.com
MiMa Create and Play
MiMa Create and Play offers tons of opportunities to create, play, learn and explore in every possible way. Our sensory gym and play space is designed to spark kids’ imaginations and their love to discover. We are proud to say that our space is filled with different kinds of swinging equipment and endless imaginative activities. Help improve your child’s motor skills and body awareness with our overhead equipment including hammocks, hanging ladders, buoy balls and much more! Try an art class in our paint room. We use high quality equipment and washable paints suitable for specific age groups.
MiMa CREATE AND PLAY 881 Main Street, Suite 14 Sayreville, NJ 08872 (732) 952-8444 info@mimacreateandplay.com
mimacreateandplay.com
SPECIAL NEEDS GUIDE
THE BEST APPS AND ONLINE RESOURCES FOR KIDS WITH ADHD These apps, games, and online resources will help kids with ADHD learn to focus and thrive in school.
BY LINDA DIPROPERZIO
Linda DiProperzio has written extensively on parenting issues for Parents, American Baby, Parenting, and Family Circle, among others. She lives in New York with her husband and two sons.
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s a mom of a son with ADHD (attention-deficit / hyperactivity disorder), I know the challenges that children with the diagnosis can face both in and out of school. And since it is one of the most common neurodevelopmental disorders among children in the U.S., according to the Centers for Disease Control and Prevention, I’m not alone in the constant search for resources for kids with ADHD that can help my child thrive. If your child is anything like mine, they love being on their electronics. Luckily, there are plenty of websites, apps, and online games that can assist in everything from boosting focus and fostering calm practices to improving reading and math skills. Here are 9 that are definitely worth checking out.
APPS & ONLINE RESOURCES TO HELP KIDS WITH ADHD FOCUS
Breathe, Think, Do with Sesame Street Recommended ages: 4 and older Platforms: Apple and Android Cost: Free This bilingual app (English and Spanish), designed for children ages 2-5, uses beloved Sesame Street characters to help children learn how to calm down with deep breathing. Plus, it helps your child learn Sesame’s “Breathe, Think, Do” strategy to gain problem-solving skills for getting through tough situations. GoNoodle Recommended ages: 5 and older Platforms: Website, Apple, and Android Cost: Free My elementary school child loves to get some of his extra energy out with the videos on GoNoodle. He can jump and
SPECIAL NEEDS GUIDE
The GRACE Foundation
The GRACE Foundation is a nonprofit organization that was established to improve the lives of individuals and families affected by Autism Spectrum Disorder (ASD) Today the rate of newly diagnosed children is 1 in 54. As individuals with ASD age, more specialized services are required to address the changing needs of the individual and their families. Currently GRACE provides programs (including Site Based Respite/In-Home Respite, Day Hab, Com Hab, SEMP and FI) for over 300 participants (ages 5-30) and growing. The ultimate goals are to enable individuals with ASD to lead independent and productive lives.
THE GRACE FOUNDATION 718-983-3800 460 Brielle Avenue • 10314 facebook.com/graceofny.org
graceofny.org
Sensorielle
Sensorielle was established in 2020 after recognizing how many parents were struggling with their children during the unprecedented COVID-19 experience. We possess a combined 15 years of professional experience working with monolingual and bilingual children from birth through adolescence including early intervention, speech delays, sensory processing disorder and children with ASD. Sensorielle provides a variety of classes and services tailored to children’s needs and interests. With a vision of providing the community of children with a multiple intelligence approach to learning; we believe in having children fully immersed in their learning. We incorporate proprioceptive activities, thematically correlating arts, culture, music, movement, and social emotional skills. 3930 Richmond Avenue • 10312 347-341-6849 • sensoriellenyc@gmail.com • instagram.com/sensoriellenyc
sensoriellenyc.com
Los Niños Services
Our mission is “to be of great service to others.” We strive to help children with autism and special needs achieve their full potential. We provide early childhood special education (birth to 3 years old), ABA services through private insurance (ages 3 to 21 years old), and training for parents as well as professionals through Los Ninos Training. Our expert Board Certified Behavior Analysts and highly skilled technicians make a world of difference. We change lives forever.
LOS NIÑOS SERVICES
Staten Island office coming soon. Corporate office is located at 535 8th Avenue • NY, NY 10018 718.984.9022 ext 223 info@losninos.com facebook.com/losninosservices
losninos.com
SPECIAL NEEDS GUIDE dance around in the morning, so he’s better prepared to sit for class when he gets to school. GoNoodle also offers content in Spanish.
HeadSpace Recommended ages: 8 and older Platforms: Apple and Android Cost: Free to download app; $12.99 per month or $69.99 per year Learning to focus and calm your mind is an important process for kids with ADHD. Headspace simplifies meditation and also has sessions dedicated to de-stressing, sleeping better, and feeling less anxious. Because of the COVID-19 pandemic, Headspace partnered with Barbie and Sesame Street to create mindfulness and meditation videos for kids on YouTube to help children ease anxiety.
Focus Booster Platforms: Mac and Windows Cost: Free to $4.99 per month, depending on which plan you choose Time-tracking apps can help your child understand how long certain tasks take, which can make them seem much less overwhelming. “Focus Booster is the best time-tracking app I’ve found, especially for my child,” says Lorie Anderson, a parenting blogger at MomInformed and a mom of a daughter with ADHD. “It breaks
long-term goals down into incremental ones, which makes everything seem more achievable for her.”
APPS & ONLINE RESOURCES TO HELP KIDS WITH ADHD IN SCHOOL
Learning Ally Recommended ages: 5 and older Platforms: Website, Apple, and Android Cost: Free to download the apps; annual membership is $135 Many kids with ADHD lose focus when reading and are better suited to auditory learning. This site provides audio versions of books and textbooks.
Mathmateer Recommended ages: 8 and older Platforms: Apple Cost: $1.99 This action game, which includes 56 math missions that are different every time, has players build a rocket and work to keep its “hang time” as they solve various math problems.
ReadWriteThink Essay Map Recommended ages: grades 3-12 Platforms: Online, Adobe Flash Player
Cost: Free This interactive graphic organizer helps students develop an essay outline that includes an introductory statement, main ideas, supporting details, and a conclusion, as well as multiple ways to navigate information. The program allows students to move the map around so they can easily organize their work.
MindNode Platforms: Apple Cost: Free to download and use, optional subscriptions range from $2.49-$19.99 This brainstorm app is helpful for older kids that are writing papers for school. MindNode utilizes mind maps so users can actually visualize their thoughts, link ideas, and arrange points. You can then transform your nodes into tasks, as well as add colored stickers to
better set up your mind map. Dragon Speech Recognition Platforms: Windows Cost: $200 for the home edition My son has a lot of great ideas and thoughts but doesn’t love sitting on his Chromebook to type them out. This voice-recognition software helps students put ideas on paper by typing as they speak.
SPECIAL NEEDS GUIDE
Sunny Days Early Intervention and TeleHealth Services Making the world brighter, one child at at time. Providing a full range of services: Physical Therapy, Occupational Therapy, Speech Therapy, Psychological Services & ABA Special Instruction Services. We tailor these services to specifically target each child’s needs with an individualized Family Service Plan (IFSP). Tele-Health services available immediately!” 718.556.1616 or 311 1110 South Avenue, Suite 405 • SI, NY 10314
sunnydays.com
Person Centered Care Services Person Centered Care Services is a not for profit organization creating social change within communities by supporting people with disabilities on their search for identity and acceptance. Services available include Community Supports, Residential Supports, Career Supports, Day Supports, Family Education & Training, and SelfDirected Supports. 150 Granite Avenue • Staten Island, NY 10303 718.370.1088 • info@pccsny.org facebook.com/pccsny • instagram.com/pccsny • twitter.com/PCCSny
pccsny.org
Eden II Programs The mission of Eden II Programs is to support people with autism throughout their lives to achieve their full potential through service, science, and passion. Programs and services include: Preschool, school, SEIT, SETSS, adult services, residential services, community habilitation, respite, afterschool recreation, consultation support, and various other supports and programs for children and adults with autism spectrum disorders.
EDEN II PROGRAMS
Agency Headquarters | 15 Beach Street • 10304 facebook.com/eden2programs twitter.com/Eden_Two instagram.com/eden2programs/ youtube.com/user/EDEN2Programs
eden2.org
SPECIAL NEEDS GUIDE
10 Kids’ Books That Star Protagonists with Special Needs BY JACQUELINE NEBER
Jacqueline Neber is a social journalism MA candidate at the Craig Newmark Graduate School of Journalism at CUNY. When she’s not reporting, you can find her petting someone else’s dog.
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hese 10 books are just some of the many options that feature kids with special needs–and their siblings–fighting crime, solving mysteries, navigating school, loving each other, making friends, and just being awesome. Representation is hugely important in kids’ and young adult fiction. Unfortunately, it can seem like the selections that star kids with special needs as main characters–not sidekicks–are few and far between. If you have a kid that would love to read about a character like him–or would just like to see the world from a different perspective–this can be discouraging. So we’ve rounded up 10 titles whose protagonists have special needs, and that fall under every genre of fiction, so your child can see herself represented in works that might become some of her favorite reads. Roll With It by Jamie Sumner This novel stars Ellie, a sassy, take-no-prisoners 12-year-old who wants to be a professional baker and who happens to get around in a wheelchair. When she and her mom move to a new town to help her grandma out, readers will get an inside look at what it means to navigate school, friends, and family with a physical disability. Roll With It is funny, poignant, and real. Bouncing Back by Scott Ostler Carlos Cooper used to own the basketball court, but now, after the accident, can’t find his way on the wheelchair basketball court. He’s still learning the ropes when the corrupt mayor threatens to demolish the wheelchair team’s practice court, but when the game he loves is
threatened, Carlos realizes he has to get it together or leave basketball behind. This book brings kids into the wild world of wheelchair basketball. The Curious Incident of the Dog in the Night-Time by Mark Haddon This is a classic that your child might be required to read in high school. But if he’d like a head start, he’ll be enthralled by the narration of Christopher John Francis Boone, a 15-year-old with a superbly logical brain. Christopher relates well to animals, but not to humans. He knows all of the countries of the world and their capitals, but cannot stand to be touched. It’s Christopher’s penchant for rules and patterns that leads him to be the hero of the story, attempting to solve the murder of his neighbor’s beloved dog, Wellington. Christopher experiences the world completely differently than many kids, which is exactly why yours should read this book. Wonder by R.J. Palacio August “Auggie” Pullman just wants to be ordinary, but he was born with a facial difference that classmates at his new school just can’t seem to get over. The book switches from Auggie’s hilarious perspective to his classmate’s, his sister’s, her boyfriend’s, and more to paint a portrait of a whole town learning how to be accepting. It’s a must-read to teach tolerance, kindness, and perspective. Flying to the Light by Elyse Salpeter This novel gives kids a chance to experience the perspective of a teenager who has a sibling with special needs. Michael Anderson and his little brother Danny, who is deaf, are faced with mortal danger after their parents are kidnapped and the
brothers find themselves on the run from a truly creepy villain. When Michael figures out that Danny has a special gift, he must figure out how to protect him from those who might want to abuse it. Flying gives voice to a character many readers who have siblings with disabilities might relate to. We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen Six-year-old Emma can’t wait for all the things she’ll be able to do with her baby brother, Isaac. When she learns he has Down syndrome, she starts thinking in terms of what Isaac can’t do. But with the help of her dad, Emma learns to be patient with Isaac, and discovers that with compassion (and a good big sister!), Isaac can do anything. This is perfect for little readers ages 3-7 and showcases the power of compassion and acceptance–and because of that, is a great read for kids of all ages. Anything but Typical by Nora Raleigh Baskin Jason is a 12-year-old with autism who doesn’t feel like he belongs in the neurotypical world. But that begins to change when he meets PhoenixBird–aka Rebecca–online, posting stories to the same site he does. Jason can finally be himself. He thinks Rebecca could be his first real friend, but is terrified that if they meet in person, Rebecca won’t be able to see past Jason’s disability. This novel is an eye-opener into differences, acceptance, and what it means to be yourself. Wilma Jean the Worry Machine by Julia Cook Anxiety in kids often goes misdiagnosed, but worriers will definitely see
SPECIAL NEEDS GUIDE themselves in Wilma Jean, a little girl who sometimes finds her anxiety impeding her life. The book aims to normalize anxiety for kids, give kids the tools to feel more in control, and provide parents with tips for lessening the severity of their child’s anxiety–all while telling a funny and relatable story. Counting to D by Kate Scott Sam is dyslexic, smart, and can’t read–so kids at her old school never knew how to treat her. When Sam moves to a new city and falls in with the Brain Trust, a group of über-competitive smart kids that includes her new crush, she decides to keep her learning disability a secret. But the odds of getting the guy, the grades, and more are stacked against her. Readers who have learning disabilities of their own–and really any reader–can relate to Sam’s challenges and triumphs. My Brother Sammy is Special by Becky Edwards and David Armitage Younger kids who have siblings with special needs might see themselves in Sammy’s brother, who gets frustrated by all the things Sammy cannot do–like take the same school bus, play in the park, or be a “normal” brother. But just as Sammy’s brother learns that Sammy’s autism doesn’t mean he can’t be a good brother, readers will learn an important lesson about acceptance, differences, and the power of family.
PRESCHOOL
SERVICES
JCC FIRST FOOT FORWARD
CLAIRE GUTTSMAN, MA CCC-SLP
The JCC of Staten Island offers First Foot Forward as part of our continuum of services for people with disabilities. First Foot Forward is a special education preschool program which provides services for children with speech/language, motor, and cognitive delays.
Speech and language pathologist with over 40 years of experience. Services on an individual and/or group basis for all ages. Also providing accent reduction and public speaking programs on an individual basis. Approved by the NYC DOE for CPSE & RSA cases. Fees reviewed on an individual basis. Remote therapy provided.
Jayne Smith, Chief Program Director
718.475.5265 • jsmith@sijcc.com 1466 Manor Road • 1297 Arthur Kill Road 2221 Richmond Avenue
SERVICES
INCLUDEnyc Questions on special education & disability systems? INCLUDEnyc serves as the Early Childhood & School-Age Family and Community Engagement Centers (FACE) for all five boroughs. Call our free Help Line: www.includenyc.org
212.677.4660 | info@includenyc.org 116 East 16th St, NY, NY 10003 English: includenyc.org • Spanish: incluyenyc.org facebook.com/includenyc instagram.com/includenyc
Claire Guttsman, MA CCC-SLP
1076 Forest Avenue • SI, NY 10310 718.447.5501
SERVICES
A VERY SPECIAL PLACE, INC. (AVSP) A Very Special Place, Inc. provides a comprehensive network of programs and services, including fiscal intermediary services for Self-Direction for people with intellectual and developmental disabilities and their families. 49 Cedar Grove Avenue • 10306 info@avspny.org • avspny.org facebook.com/AVSPSI instagram.com/averyspecialplace
Mastermind Behavior Services At Mastermind, we believe that every child with Autism is filled with potential beyond the skills demonstrated. We view our responsibility as uncovering the potential of the child’s fullest capabilities. Our expert BCBAs begin with a thorough evaluation of your child’s abilities. Once the evaluation is completed, your BCBA will develop a treatment plan that matches your child’s areas of need. Following insurance authorization, ABA therapy will begin in your child’s natural home environment, under the guidance of skilled and effective therapists. Every phase of our evaluation and therapy is based on the principles of ABA and is completely evidence and research-based.
MASTERMIND BEHAVIOR SERVICES 732.813.7333 info@mastermindbehavior.com
mastermindbehavior.com