Long Island Special Child - November 2022 by Schneps Media Digital Editions

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Special Needs Resource Guide

contents NewYorkFamily.com Publisher: Clifford Luster Executive Director: Donna Duarte-Ladd Associate Publisher: Erin Brof Advertising Director: Stacie Goldberg Deputy Editor: Jeannine Cintron Digital Editor: Kaitlyn Riggio Events Manager: Shara Levine Reporter: Barbara Russo Senior Adviser: Susan Weiss Partnership Managers: Lauren Alperin, Lauren Anchin, Joan Bergman, Mary Cassidy, Chris Cunningham, Lori Falco, Shelli Goldberg-Peck, LynnMarie Hanley, Lisa Herlihy, Janine Mulé, Cara Roteman, Nina Spiegelman, Gwen Tomaselli Marketing & Strategy Director: Rosalia Bobé Sales & Marketing Coordinator: Mykael Fields Marketing Assistant: Tilejah Gilead Art Director: Leah Mitch Web Developer: Sylvan Migdal Graphic Designers: Arthur Arutyunov, Connie Sulsenti Editor at large: Cris Pearlstein Editorial Contributors: Jana Beauchamp, Mia Salas Editorial Interns: Tiana Henriquez, Adam Mobley, Campbell Schouten

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4 | 5 Common Myths About Autism Spectrum Disorder There are a lot of stereotypes about autism that just aren’t true.

12 | Stuttering Understanding more about kids who stutter — and how to listen

8 | Occupational Therapy The many benefits of OT and what parents need to know

14 | Understanding OPWDD Services How to use this complex New York State program to help your child with special needs

10 | 7 Benefits of Having a Pet A family pet can help your child with special needs learn skills, reduce anxiety, and more

16 | Special Need Directory Local resources

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November 2022 | The Special Child

SPECIAL NEEDS

5 Common Myths About Autism Spectrum Disorder

There are a lot of stereotypes about autism that just aren’t true. Here’s what parents should know BY KATELIN WALLING

hile the awareness of autism spectrum disorder has grown due to social media, increased research, Autism Awareness Month, and more, there are still many misconceptions about ASD, from its causes to the characteristics and abilities of those on the spectrum. As its name denotes, autism is a spec-

NewYorkFamily.com | November 2022

trum, meaning not everyone diagnosed with autism displays the same traits, exhibits the same behaviors, or has the same abilities— just like you or me. So applying blanket statements to those on the spectrum would be like saying girls can’t throw or boys don’t cry. We spoke to experts about stereotypes of ASD, and uncovered the truth behind five big misconceptions about the disorder and those diagnosed with it.

Myth 1: Vaccines cause autism. Unfortunately we do still hear the misconception that autism is related to vaccinations, commonly the measles, mumps, rubella vaccination, says Sarah Kuriakose, Ph.D., BCBAD, clinical assistant professor of Child and Adolescent Psychiatry at NYU Langone Health. “Not only was the initial study that showed that a fraudulent study, but follow-up studies have debunked that many times,” she explains.

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There are other concerns that autism is caused by “various environmental factors that a pregnant mother may be exposed to and in utero some of those environmental causative factors may have somehow affected the fetus,” says John Pfeifer, senior director of Clinical Services and the Family Center for Autism, part of Life’s WORC, a Long Island nonprofit that supports people with developmental disabilities and autism. “There’s still ongoing research about the expansion of electromagnetic technology and various environmental chemicals and such that may be at play, but not knowing everything in the environment that may be affecting a fetus, either seen or unseen, makes it hard to decipher that.” “What we do know about autism is there seems to be a genetic component, and about ten to twenty percent of cases with ASD are linked to an identified genetic disorder,” says Dr. Kuriakose, who is also senior director of the NYU Langone Autism and Developmental Neuroscience Initiative and the clinical director of the Autism Spectrum Disorder Clinical and Research Program at NYU’s Child Study Center. “We anticipate that that number will go up with more genetics research. But even in identical twins, the concordance rate is not one-hundred percent, so we know there is some factor that is not genetic as well.” Myth 2: People on the spectrum are anti-social and don’t have feelings. Dr. Kuriakose says parents, teachers, and even doctors will tell her things like, “that child can’t have autism because…he’s affectionate, …she makes eye contact, or …he’s interested in other kids.” “So what can end up happening is people have this very black-and-white picture that a person with autism is someone who is anti-social and isn’t interested in other people,” she says. “We know that those aren’t necessarily true.” Yet thanks to this persistent myth, a child who does have autism might not be given a diagnosis—his parents may be hanging on to the fact that their child is affectionate though he is struggling in other ways. “It is often thought that people with autism don’t have feelings, which is a very sad misconception and very far from the truth,” adds Janet Koch, CEO of Life’s WORC. “They are capable of having loving relationships with family members and friends.” Myth 3: People with autism exhibit challenging and/or maladaptive behaviors.

NewYorkFamily.com | November 2022

“It is often thought that people with autism don’t have feelings, which is a very sad misconception and very far from the truth.” “It’s not fair to say that challenging behaviors are inherent in the diagnosis,” Pfeifer says. “They are often a byproduct of ineffective treatment of some of the things that are inherent in the diagnosis, which are communication and socialization difficulties.” These behaviors could include flapping hands, rocking, or other selfstimulatory behaviors. “We still unfortunately have the misconception from previous media portrayals that kids with autism are nonverbal, are going to sit in the corner, and just rock or flap their hands,” Dr. Kuriakose says. As society becomes more educated about autism, people are learning about adapting communication efforts. “I have young children, and they’re learning in integrated classrooms about what these behaviors may mean. It could actually help a person [on the spectrum] to not escalate to such a significant behavior because they’ll be able to communicate more easily with people who have been taught how to communicate with them,” Koch says. Myth 4: Those on the spectrum are savants and/or are fixated on one topic. The media commonly portrays those with autism as being savants or having restricted interest in a singular subject area: Sam Gardner in Netflix’s Atypical and Shaun Murphy in ABC’s The Good Doctor are two recent portrayals. “Certainly we have kids and adults with autism who have an amazing depth of knowledge in a particular area, incredible memory, incredible pattern recognition skills, things like that that are going to set them up for a particular career,” Dr. Kuriakose says, but not all people on the spectrum show these characteristics. In fact, the most recent criteria for an ASD diagnosis from the Diagnostic and

Statistical Manual of Mental Disorders fall into two categories: social communication and restricted, repetitive behaviors (RRB). There are four traits that fall under the RRB category—repetitive speech or behavior/ mannerisms, restricted interest, sensory challenges, and difficulty with transitions or insistence on sameness—and a person needs to only exhibit two of the RRB traits (and meet criteria from the social communication category) to receive a diagnosis of autism, according to Dr. Kuriakose. “So you could have a kid who has some sensory challenges and insistence on sameness without any restricted interest at all and you could still have the diagnosis,” she says. Myth 5: People with ASD can’t go to college, have jobs, or get married. Because some people with autism may struggle with social situations, have communication challenges, and have difficulty with flexibility, there’s the misconception that they will not be able to attend higher education, have a job, or get married and have kids. “There are lots of examples of folks with autism who do successfully do those things, and the big thing that’s important is it’s all about the supports the environment can provide,” Dr. Kuriakose says. When working with a patient who is looking at colleges or employment opportunities, Dr. Kuriakose looks for a setting that is supportive of that patient’s strengths and challenges. In fact, “a lot of individuals with autism are actually really great, dedicated, passionate employees, but it has to be a setting that can understand that they might process information and interact in ways that are slightly different from typical.” In terms of getting married, Dr. Kuriakose says there are quite a few instances where she’s diagnosed a child with autism, and a few months later their parent will observe that they’re seeing some of the same characteristics in themselves or another family member. “And these are all people who had families,” she says. Combatting the myths So how can we continue to combat these and other myths about people on the spectrum? “Just like with any other group, you shed your misconceptions when you have more close relationships with people in that group,” Dr. Kuriakose says. “And so I really would encourage people to engage with lots of individuals with autism.”

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November 2022 | The Special Child

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Occupational Therapy The many benefits of OT and what parents need to know By Jeannine Cintron

“E

very child develops at their own pace.” I have repeated this (absolutely true) statement countless times before, always in an effort to comfort a concerned friend or relative who is wondering why their child isn’t walking yet, talking yet, playing yet or reaching any number of milestones a parent will anxiously await when their kids are young. I’ve even said it to myself a few times. A parent’s job is to worry, right? But what happens when it becomes apparent that “their own pace” is nowhere near that of other children their age? Words of comfort from a friend should be replaced by the advice of a professional, which is when the occupational therapist might come in. We chatted with Nicole Benedicks, a school-based certified Occupational Therapist, who shared with us what the OT

NewYorkFamily.com | November 2022

does and what a parent should expect if their child is starting this kind of therapy. What does an Occupational Therapist do? Generally, occupational therapists work with people of all ages in a variety of settings to enhance or recover function, teach or modify a skill, or adapt a task or the environment to promote independence. Occupational therapy helps people live more independent lives and engage in everyday activities that are purposeful to them. I work with children in a special education school environment (K-5) to support and enhance students’ school-based skills. I work with a team, which can include the teacher, speech therapist, and physical therapist, guidance counselor and/or social worker. I typically work with students 1:1 or in a small group to develop or enhance skills to help them function and be as independent as possible within the school environment. Areas of

focus can include writing, cutting, dressing, feeding, visual perceptual skills (e.g. puzzles), and visual motor skills. What is the difference between Occupational Therapy and Physical Therapy? There is a lot of overlap between the two professions. The most common assumption is that occupational therapists focus on the upper extremities and that physical therapists focus on the lower extremities, but that is not always the case. Both professions focus on the entire body and movement, but occupational therapy typically focuses on improving a person’s ability to engage in everyday activities, and evaluates limitations that might be affecting their daily performance. Physical therapy, on the other hand, focuses on movement, specifically a person’s physical abilities and limitations in their mobility, strength and range of motion, and evaluates their movement dysfunction. How can you prepare your child for Occupational Therapy? It is beneficial to start therapy immediately once you notice there is a problem or delay in development. When your child is very young there isn’t much you can do to prepare them for occupational therapy. However, if

"Occupational therapy helps people live more independent lives and engage in everyday activities that are purposeful to them."

therapy begins when your child is old enough to understand that they are meeting someone new, preparation will depend on your child’s age and level of cognition. Typically, OT sessions include play activities, so explaining to your child that someone new will be coming to play with them may help to prepare for their session. I typically recommend having a child’s sessions scheduled for an optimal time of day where you would expect them to perform their best (i.e., not too tired, not overstimulated). Avoid allowing them to be engaged in a desired task (e.g., playing with a tablet, watching television) just before their scheduled session because removing the desired item can lead to a meltdown and your child may make a negative association with their therapist.

and use in their everyday lives. For children with more severe cognitive and/or physical deficits, treatment can last through childhood into adulthood.

How long can treatment last? The length of time a child receives treatment varies based on the child’s needs. Treatment can be on a consultative level where a child may not receive direct services and an OT can provide useful information and strategies that families can implement

What does treatment look like for a child who mildly needs OT versus a child who has a disability? Typically, treatment for a child with mild delays focuses on specific areas of deficit and the OT will work to develop those problem areas to promote independence.

When a child has a more severe disability, an OT will typically work on a range of skills focusing on helping children play and learn in a purposeful way. When physical disabilities are involved, treatment can include strengthening tasks, fine motor muscle development, improving dexterity, and adapting a task or the environment so they can engage in tasks in a modified way. What should a parent consider when selecting the right OT professional for their child? I would recommend finding a therapist that works mostly with children, and more specifically, if your child has a diagnosis (e.g., autism, cerebral palsy), finding a therapist that has a lot of experience working with that population. You might want to schedule a “trial” session before making a decision to see how well your child responds to them. You should also consider what works best for your family and your schedule. Children can be seen in their home, at school or in a clinic-based setting. Finding what works best for your child is really going to differ from one family to the next.

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November 2022 | The Special Child

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7 Benefits of Having a

Pet

A family pet can help your child with special needs learn skills, reduce anxiety, and more By Linda DiProperzio

he happiness that a pet can bring to a home is immeasurable. For a family with a child with special needs, a beloved furry friend can offer an even wider variety of benefits. “Gifting a kid with special needs a pet is one of the best things you can possibly do, says Sara Ochoa, D.V.M., veterinary writer at WeLoveDoodles.com. “Animals inherently possess an unbiased view of all living beings and can be incredibly empathetic, which is exactly why they make the perfect companions for children with special needs.” How does having a pet help kids with autism, physical disabilities, anxiety, and other disabilities and diagnoses? In fact, Dr. Ochoa says that any pet can offer therapeutic benefits to kids with special needs. Here are some ways bringing a pet into your home can improve your child’s life and health.

1. Pets provide companionship for kids who struggle socially Pets offer a bond for kids who could be struggling to make connections with their peers, which can leave them feeling lonely and isolated, says Sherry Morgan of Petsolino. “Dogs and even cats are innocent creatures that can be a very good support system. They are non-

NewYorkFamily.com | November 2022

judgmental, good listeners, stress-relievers, and can give you nice and warm cuddles!”

B.V.S., BVMedSci, MRCVS, and a team member at Breed Advisor.

2. Pets help reduce stress and anxiety There’s no denying we are living in a stressful time, and kids with special needs can often feel that anxiety on another level. “The calm demeanor and loving presence of dogs can cause a perceived reduction in stress and cortisol levels in children,” says Danielle Mühlenberg, a dog behaviorist.

5. Taking care of an animal helps kids learn responsibility Taking care of their pets will help a child with special needs create their own schedule, including when to feed or bathe the pet, and even when it’s time for some fun. Morgan points out that this daily routine helps create better habits, such as the ability to make plans, then focus and stick to it.

3. Dogs help kids with special needs stay physically active Getting active can be a stress reliever, as well as a mood booster. Pets encourage children to en-gage in physical activity and spend time outdoors, which is beneficial for healthy lifestyle habits, notes Rachel Barrack, D.V.M., of Animal Acupuncture in NYC.

6. Pets can help kids with physical disabilities with everyday tasks Animals can be trained to grab objects, open doors, and guide people with limited mobility or physical impairments, Dr. Barrack notes.

4. Pets can help kids with autism build social skills Research has shown that animals increase social behaviors in children on the spectrum. “Children with autism were more likely to talk, smile, laugh, and make physical contact with others when they had real pets, rather than toys,” reveals Joanna Woodnutt, B.V.M,

7. Support dogs can help with a child with special needs’ well-being A fully trained support dog can be taught behaviors such as applying pressure to help with a panic attack or sounding the alarm if self-harming behaviors are happening. Dr. Woodnutt notes that there are even charities that train dogs for a child’s particular needs. This story was originally posted on our sister site nymetroparents.com.

Touching Hearts, Changing Lives Together. The Variety Child Learning Center promotes the development, education, and inclusion into the diverse community of children with or at risk of disabilities.

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Early Intervention (EI), the Committee on Preschool Special Education (CPSE) and the Committee on Special Education (CSE) services are for children who have or are suspected of having a developmental delay or disability and are eligible based on New York State Department of Health (NYSDOH) or New York State Education Department (NYSED) guidelines. For EI, referrals are made by Nassau County Department of Health/Suffolk County Department of Health (NCDOH/SCDOH) depending on your residency. Local school districts for CPSE and CSE must refer children for evaluations. Types of services, frequency, duration, location and provider are determined by the municipality for EI and the school district for CPSE and CSE. Families have no out-of-pocket expenses but are responsible for fees/costs associated with childcare. All teachers and therapists are licensed and/or certified according to NYSDOH and NYSED regulations.

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November 2022 | The Special Child

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Stuttering Understanding more about kids who stutter — and how to listen By Donna Duarte-Ladd

hile many parents have been home with their children helping, guiding, and teaching through remote schooling, many are also having to understand the needs of their child when it comes to a special need that needs to be addressed, such as stuttering. Many may recall 13-year-old Brayden Harrington’s brave speech at the Democratic National Convention that shined a national spotlight on stuttering. While as many as 5% of children stutter, there is much to be educated on stuttering, which is why we connected with the nonprofit organization SAY: The Stuttering Association for the Young who shared on this special need that is not often addressed in mainstream media. SAY shared with us their sage knowledge and tips on what they call “Stuttering 101.” What is stuttering? Stuttering is a complex communication disorder. It is not easy to define because it looks very different in each person and can even change over the course of a person’s lifetime. As many as 5% of young children stutter, and approximately 1% of all people – that’s 70 million people! Although no two people who stutter are exactly the same, we can generally understand stuttering in three connected parts: Surface behaviors – qualities of speech that you can see and hear, e.g. • Sound repetitions (“Let’s ride in the c-c-car”) • Sound prolongations (“Hey, that’s mmmmmy toy”) • Silent blocks (“Let’s read a —– book”) • Secondary characteristics – other body movements when a person is stuttering. This can include eye blinks, leg shaking, lots of tension in the throat, or many other characteristics. Impact on attitudes and emotions – Some people who stutter may not be bothered by their stuttering at all. Many others, however, struggle with shame,

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embarrassment, anxiety, or low self-esteem. For some, the impact on quality of life can be far more significant than the surface behaviors. Impact on everyday life – Many people who stutter go to great lengths to try to hide their stuttering. As a result, they may avoid or struggle with many ordinary situations, such as ordering at a restaurant, introducing themselves, or reading aloud in class. Children who stutter may also face bullying or teasing at school because of the way that they talk. Each person who stutters will have different surface behaviors and different degrees of difficulty with their speech. But it is important to recognize that stuttering is much more than what we can see and hear. What causes stuttering? Many factors contribute to stuttering as a child develops. Up-to-date research says that stuttering has a genetic link. This can result in a person having small differences in how his or her brain is organized for speech and language. Other contributing factors may include the child’s temperament, emotions, and language development. It is important to know that stuttering

is nobody’s fault. Stuttering is not caused by anything parents do. Core stuttering behaviors are involuntary, which means that they cannot always be controlled. Many people find ways to work around or minimize the impact of their core stuttering, while speech therapy and support groups can play a role in helping individuals to better understand their speech. But it is different for everyone. How should I act around someone who stutters? Just be yourself, and remember – the main difference between a person who stutters and a person who doesn’t is that the person who stutters may need some extra time to talk. See our Listening Tips below for more information. Can stuttering be cured? Stuttering cannot be “cured” like a disease or illness, and there is no approved medication to treat stuttering. However, speech therapy and support groups have been shown to help children who stutter reduce the negative impact of stuttering on their lives. Young children (typically age 2 ½ to 6) often see reduced stuttering behaviors as they

continue to grow, and it is thought that early intervention speech therapy makes a difference. Listening Tips These tips are provided to help make your interactions with a person who stutters a more positive, communicative and supportive experience. Please be patient. You may be tempted to finish sentences or fill in words, but please refrain from doing so unless you know the other person well and have their permission. Although you may have the best of intentions, completing another person’s sentences may feel demeaning. Of course, if you guess the wrong word, the communication difficulties only increase. Try to refrain from comments such as “slow down,” “take a breath” or “relax.” To many people who stutter, this advice feels patronizing. Maintain eye contact and try not to look embarrassed or alarmed. Just wait patiently until the other person is finished talking. Be aware that people who stutter often

Remember, the main difference between a person who stutters and a person who doesn’t is that the person who stutters may need some extra time to talk. have more difficulty speaking on the telephone. In particular, saying “Hello” can be a special problem. Please be extra patient in this situation. People sometimes wonder if it’s OK to ask someone questions about their stuttering. This is certainly a judgment call and stuttering should not be considered a

taboo subject. However, some people who stutter are sensitive about it and may prefer not to discuss the subject. By following the rules of common courtesy, everything should be fine. A person’s stuttering sometimes makes it harder to understand what they are saying. If you do not understand what is being said, don’t be afraid to simply say, “I’m sorry, I didn’t understand what you just said.” No matter how much of a struggle it was for them to say it, this is preferable to pretending you understood or guessing what was said. Let the person who stutters know by your body language and actions that you are listening to what is being said, not how it’s being said. Be yourself and be a good listener. SAY: The Stuttering Association for the Young is a national 501(c)(3) nonprofit organization that provides support, advocacy, and life-changing experiences for young people who stutter, ages 3-18. Since 2001, SAY has offered comprehensive and innovative programs that address the physical, social, and emotional impacts of stuttering.

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November 2022 | The Special Child

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Understanding OPWDD Services How to use this complex New York State program to help your child with special needs By Mia Salas

irst, know in this special need journey with your child — there is help and hope. Carrie Paden watched her 10-year-old daughter Isa mount onto the horse. Isa, who attends the Gillen Brewer School for Special Education on weekdays, had a big smile on her face as the horse started to slowly trot along the path. Isa bounced up and down and looked all over— first at the horse, then straight ahead at the path, then up towards the sky. NYC is a gem, but it just simply does not offer the exquisite farmland in Nyack that her daughter visited every Sunday for horseback riding lessons– the open, blue sky, the farm animals roaming around, the old, deeply-rooted trees boasting beautiful leaves, and Isa, glowing and waving from her perched spot on a horse. And thanks to financial assistance from OPWDD– the Office of People with Developmental

NewYorkFamily.com | November 2022

Disabilities– Isa gets to mount that horse every single week with confidence. What is OPWDD OPWDD helps coordinate services for New Yorkers with special needs, like Isa who has intellectual and physical developmental delays. Raising kids with special needs can be challenging, so we’re always on the lookout for resources that can help our NYC parents. We know of OPWDD because there are moms on staff here at NYF who are parents of kids with severe special needs. We wanted to share more here so that NYC families can learn about how OPWDD may be helpful for their situation. Read on to find out about the services OPWDD offers, how to get involved, and how to best take advantage of the offices for your child. How OPWDD works One of the most important things to note is that OPWDD does not directly provide your

family services. Rather, it provides services through a network of approximately 500 nonprofit service providing agencies. With this many nonprofit agencies, there are plenty of services available to you, depending on what your child needs. OPWDD is not based on financial circumstances, which means that no matter your family’s financial situation, you can benefit from OPWDD and the services they provide. We should also mention that OPWDD is most definitely not only for kids— it can help special needs adults transition into a community, provide assistance for families of special needs adults who choose to stay at home, and connect your family with clinical or therapeutic support. If you are curious to learn more about housing through OPWDD, check out (opwdd.ny.gov/ types-services/housing) for the types of housing and to learn about the communities! Now how do you even get started with OPWDD? The process is a bit lengthy with

paperwork, evaluations, and info sessions, but the financial assistance you receive is worth it. “When I started, it was very interesting because I was literally at his huge table with a bunch of different parentsdifferent journeys, ages, backgrounds- and I’m thinking, how come nobody knows about this? It’s literally money that the state gives you to help your child.” The problem is that OPWDD isn’t necessarily broadly advertised, which is why we’re giving you the scoop here! But it’s not every day that you see a detailed ad on Facebook or Instagram about the many benefits OPWDD offers. Why this is, we’re not exactly sure, but nonetheless, we’re letting you know now that if your child or someone in your family has special needs, you can receive additional financial support to help you along your journey. As most parents know, you have to be ready to fight for your child and their rights and this is a key part of their care now and for their future. We’re sure you may be wondering: so how can I finesse horseback riding lessons for my little one? We know, it sounds amazing. In total transparency, we are sharing what we know. So, yes, unfortunately, it’s a little more complicated than it seems, which makes working with OPWDD tricky. Through selfdirection, a program that OPWDD offers so that you can choose services for your kids, you’re required to hire a broker and a fiscal intermediary. “We started it, it dropped. We picked it up again, it dropped. You got to stick with it and be organized,” says Carrie. Basically, the broker helps you get the activities or services you want, and the fiscal intermediary pays the bills for those services. But having to hire a broker and fiscal intermediary sounds intimidating. It all sounds like a lot– raising a kid with special needs requires constant attention, and add the task of hiring people to eventually secure services may not sound worth it. “With special needs families any experience you have with your kid is a good learning experience, and it’s meaningful to them. I see Isa on the horse, I see how brave she is– so much braver than I think I would be on the horse. Anytime there’s a smile on her face it’s worth it.” Carrie reminds special needs families considering OPWDD that although there may be some hoops and obstacles to get there, eventually when you do, you will be thankful that you put in those extra hours. There are, of course, very specific rules for what you can spend the money on, but that’s where your broker comes in. They will help you make sure that the

“I’m thinking, how come nobody knows about this? It’s literally money that the state gives you to help your child.” services you need “fit” within the OPWDD framework. For example, Carrie wanted to enroll Isa in a speech & language social group through Extreme Kids and Crew (extremekidsandcrew.org), a nonprofit that offers multiple activities such as swimming, arts & crafts, sports etc. But OPWDD has a sneaky rule that requires that any service you use is not only for kids with special needs. In other words, it needs to be open to all children, even if they specialize in special needs. “I prefer that anyways,” says Carrie, “I want Isa to be with typical kids too.” But the description for the speech & language social group, though open to everyone, focused too heavily on special needs for it to qualify. After speaking with her broker, all Carrie had to do was get an ad rewritten that included keywords and removed ones that distinguished the social group as “therapy” just for special needs. There are plenty of other ways to work around the rules so that you can spend the money on what your child needs, and your broker will be there to help you through the process. It is a lengthy process OPWDD is a big agency, so it’s expected that there are going to be formal processes and structures in place that make it a bit difficult to get going. But know that you’ll have a support network in place along the way, including your broker and fiscal intermediary, other families working with OPWDD, and the nonprofits that you work with, who are typically more than willing to help you out with finessing any OPWDD rules if it means getting your child the support they need. We won’t sugarcoat it, it definitely takes a lot of work on your end as a parent, but many families have ultimately found OPWDD helpful. Now, if you’re considering more longterm solutions for your adult child with special needs, there are a few things to know about OPWDD. First, like the services offered through self-direction, you will eventually

receive financial assistance, but it takes a lot of effort. COVID-19 also continues to have an impact on group homes for adults for special needs, as staffing shortages have forced OPWDD to think about consolidating homes. This means that residents may be moved around against their wishes for the sake of having sufficient staffing. While we definitely understand the safety needs of having enough staffing and the way that the pandemic has impacted the workforce, many parents are frustrated, rightfully so, of the prospect of having their child abruptly moved to a new home. So if you’re looking to get involved with OPWDD right now, be mindful about the way that staffing may come into play. Another frustration that we’ve heard from parents working with OPWDD for their adult children is that residents are being moved from out-of-state homes back to instate ones before their 21st birthdays. It’s a “loophole in the law,” says Lynee Koufakis, mother of two boys ages 25 and 27 with ASD. Basically, parents have the right to “due process” after their kid turns 21 so that they can challenge OPWDD on where their child is placed. But before age 21 is up for grabs. So OPWDD was simply transferring residents, who were already used to their spaces and comfortable in their communities, back to New York if they were originally placed outof-state. Sounds a bit crazy to you? Yep, we know. Some families actually came forward and expressed how this disrupted their adult children’s lives. For kids with special needs, constancy and routine is everything. Being suddenly uprooted to live somewhere else is definitely not beneficial for their progress. OPWDD is an intricate organization. There are certainly challenges, whether you’re navigating agency services or living homes. But on the flip side, many families, like Carrie’s and Lynee’s, have found OPWDD helpful for raising kids with special needs in New York. Our best piece of advice is to explore how OPWDD may assist your family, but know that you are your child’s number one advocate. And remember that every journey when it comes to special needs is different. “My husband and I are still learning. There’s so much we need to know that we don’t know. We have not even utilized the whole budget,” explains Carrie. To learn more about OPWDD and start the process to see if your child qualifies for OPWDD, first, you start with the Front Door process. Go to opwdd.ny.gov/get-started/front-door to get started. November 2022 | The Special Child

special Needs Directory | Special Advertising Supplement

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Winston Prep Long Island 30 Deforest Road, Dix Hills 631-779-2400 kpreston@winstonprep.edu Winston Preparatory School Long Island is a leading school for students with learning differences, including dyslexia, ADHD, and nonverbal learning disorders. Learn more about their nationally recognized program at winstonprep.edu.

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NewYorkFamily.com | November 2022

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