By Amanda M. Gordon
Each morning Danielle Cannon starts her day with the same ritual. Wake up, make her son breakfast, feed her birds and lastly make herself a decent cup of coffee. Keeping a consistent schedule at home is the only thing anyone really has control of these days and Cannon tries to make the most of it. She’s the type of person that doesn’t merely hope for the best, she was raised to prepare for the worst and she has been in tight spots before the coronavirus came onto the horizon. Employed as a paraeducator, one-on-one teacher aide, and a bus monitor, Cannon can’t take her work home as New York continues to shelter in place. Financially, she feels that she will be able to ride out the summer but her biggest concern isn’t paying the mortgage on time. Cannon’s top priority is the well being of her 11-year-old son, Pharaoh, who has nonverbal autism.
Distance-based learning comes as a challenge to many families across New York state as well as the rest of the country as schools have closed their classrooms to flatten the curve. From understanding the technology schools are using to deliver education, to ensuring that their kids are participating in the school work itself while having to conduct their own work from home is just the tip of the iceberg families are experiencing with at-home education. For parents who have children with developmental disabilities, there is fear that their kids won’t just lose out on their current education but lose the skills they’ve built up over the years. Many families are already reporting signs of regression since the time school doors had been shuttered and with New York Gov. Andrew Cuomo announcing that summer programs will take place online, parents will continue to bear the weight of the educational struggles.
Pharaoh Cannon works on his assignments which are modified by his mother to fit his abilities. Photos courtesy of Danielle Cannon.“I’m doing six times the job that they would do in school,” says Cannon. Pharaoh is one of the over 460,000 disabled students in New York and given his status, Pharaoh would normally receive additional services through his Individual Education Plan (IEP) that would better enable him to interact in society, services such as speech, occupational therapy (OT) and physical therapy (PT). But IEPs aren’t privileges bestowed to students. It’s a right that is protected by state and federal law.
“It is essentially the contract between the school district and the family that lays out all the support and services a student with a disability requires to make progress in school,” says Maggie Moroff, the Special Education Policy Coordinator at Advocates for Children of New York (AFC). She also helps coordinate the ARISE Coalition, a collection of parents, advocates, academics, educators and other stakeholders who push for systemic changes to improve day-to-day experiences and long-term outcomes for students with disabilities in NYC public schools.
“It includes frequency and group size for each of the services the student needs and information about placement,” says Moroff. “What sort of classroom can offer the support the youth needs while keeping them as close as possible to general education. The IEP is important, and a well written one especially important, because if a service is on the IEP, the Department of Education is required, by law, to then provide that service.”
First written in 1975, the law regarding IEPs was created when Congress recognized the need to provide a federal law to help ensure that local schools would serve the educational needs of students with disabilities. The law they originally passed was titled the Education for All Handicapped Children Act. That first special education law has undergone some name changes with additional amendments, but today we know the law as the Individuals with Disabilities Education Act, or IDEA. Through this law, states are given federal funds to help make special education services available for students with disabilities. It also provides very specific requirements to ensure appropriate public education is provided to families and children who qualify for the assistance. The law wasn’t written with social distancing in mind however.
Ideally, and legally, programs and services such as OT, PT and speech would be administered by trained and certified professionals. Additionally, within normal times, students would receive these programs in hands-on sessions but given the current conditions placed to prevent the spread of Covid-19, parents of children with special needs are now finding themselves as the substitute with their assigned therapists giving guidance over video platforms or written instructions.
“School’s should not be 100% remote. Period.” says the County Executive of Dutchess County Marc Molinaro. Based on New York’s guidelines for reopening, education facilities would be able to resume but the timeline of reaching that benchmark is still unclear even without the developments of children being more susceptible to Covid-19 related illnesses than earlier reports indicated. Molinaro understands the necessary intervention techniques that only therapists can provide as his daughter, Abigail, has autism.
“No matter what anybody tells you, you can not use technology to replace the personal connection between teacher and student,” says Molinaro. While Molinaro agrees that schools pose certain risk factors, within a virtual town hall to his constituents on May 22, Molinaro expressed that he did not agree with the state’s decision to conduct summer programs online. Molinaro has sent letters to Gov. Cuomo’s office in hopes of addressing the struggles families with special needs are facing.
Copies of Dutchess County Executive, Marc Molinaro Letters to Governor Andrew Cuomo courtesy of the Dutchess County Executive Office.“The state of New York must have a summer school program that does not diminish the level of service, and the level of care that those with developmental disabilities deserve. In some cases, using the virtual connection, using technology can be a great experience for some young people with disabilities, because it's a tool and a practical lesson. But so many others need to have that direct connection with their speech therapist, their occupational therapist, their physical therapist. There needs to be that direct connection at times to assist those who struggle the hardest,” says Molinaro. “There are families who struggle very hard to provide care for their child, for a family member with a disability and those therapists, those teachers, those providers are perhaps the one and only professional that can make that absolute connection.”
Cathy Collyer, a registered occupational therapist based in Westchester County, is seeing some of these struggles first hand. “What makes it really hard for parents is they're being pulled in a lot of different directions,” says Collyer She’s been in the field for 35 years and since the start of the stay-at-home orders, Collyer has been offering her early intervention services over telehealth to her clients, clinical health checkups through technology rather than in person appointments. As a practitioner, Collyr knows that the delivery system isn’t ideal for everyone.
“I would have to say that the population that is struggling the most are the kids on the autistic spectrum and their parents,” says Collyer. “Those kids are a real handful to work with over screen.” Many parents of children who are on the spectrum have reported having issues of getting their children to engage in learning activities online. Methods to mitigate the behavioral issues presented by autism are best served through applied behavioral analysis, better known as ABA therapy. This type of therapy entails rigorous, one-on-one, hand-over-hand intervention that breaks down desirable behaviors in a way that allows those on the spectrum to not only perform but to retain throughout their lives. “I think that this is a very difficult mode of treatment delivery for them. Even if I can educate a parent and explain different strategies and techniques.”
Collyer notes that some parents are easier to guide over others, but teaching how to administer OT from a distance can be a struggle. “It's very hard to teach a parent how to do skilled handling techniques. I don't know that I could guide a graduate student in a technique that they're unfamiliar with,” says Collyer. “So trying to teach a lawyer, or an administrative assistant how to do skilled handling? There are just some things we can't do.”
“We are not capable, we are not trained, we are not certified to teach them what they need to know,” says Cannon. While she is aware that she may not be the best person to provide the therapy methods to her son is entitled to she knows she has some advantages compared to other families who are navigating the additional roles that have been thrusted upon their shoulders. Given her work experience and the fact that her employment is through the very same school her son is enrolled, Cannon has some additional insights on how to handle her son’s education.
“I have previous experience with special needs, not just my own. So for me to come home and have to be the teacher, I have a background to try to fall back on,” says Cannon. “ I can’t even imagine what it’s like for the parents that don’t work in the school.”
Beth Poague, who works full-time from home and has no such experience says, “If we come out of this potty trained, I’ll consider it a success.” Initially overwhelmed by the transition, Poague is gradually getting used to the classrooms being online. Her youngest son, Finnegan, 6, has a rare genetic mutation called PACS1 syndrome, a condition that presents a myriad of disorders including underdeveloped muscle tone, delays in language and speech, intellectual and neurological disorders that are akin to autism which can make learning in normal classroom settings difficult. Some with the PACS1 syndrome suffer from seizure disorders but Finn does not experience this. As a result of this syndrome, Finn experiences delays in speech and mobility and has sensory processing issues along with an intellectual disability.
When school was in session Finnegan was in the lowest student to teacher ratio possible in the Beacon City School District, a 6-to-1 class in a self-contained classroom to address and manage his needs in the least restrictive environment possible. Within this setting, Finn is receiving speech, OT, PT and engagement in social skills groups. The coronavirus has presented an additional catch-22 for those who have developmental disorders. Social distancing is of the utmost importance in limiting the spread of the novel virus, but for children who are on the spectrum or have similar processing disorders, socializing with peers is vital for their progress. Learning how to interact with society or just those outside of the family circle is not advisable given the health risks and is nearly impossible to recreate.
“Before this all started, we got Finn placed for an hour and 45 minutes in a general education classroom,” says Poague, who is disappointed with the reality that her son won’t be able to engage in peer interaction beyond a computer screen. However, Poague is trying to capitalize on what is within their limited control and in coherence with Finnegan’s IEP. With the assistance of her son’s teachers and therapists, Poague has set specific goals to strive for and together they are figuring out what is working and what isn’t.
“What we are doing is choosing what to focus on,” says Poague. “Basically, if we get out of this pandemic and he can be potty trained, and he can run, swinging his arms, and he doesn't regress in his speech, then we have done an okay job.”
While Poague is setting goals accordingly, she can’t verifiably say if Finnegan has regressed at this point. Many parents are left to suspect at a minimum their kids aren’t progressing in their development given that they don’t have the same access to academics and therapies that they would have within their classrooms. It’s also difficult for parents to gauge what may have been lost as they may not have a full scope of where their children were prior to the school closures.
Finnegan Zellinger and his father, Jim Zellinger work on Finnegan's assignments. Photos courtesy of Beth Poague.“As parents, we’re not taught these things, the therapies. We’re not allowed to,” says Cannon. Prior to her gaining employment at the Salt Point BOCES, Cannon had done two internships at the school while Pharaoh was enrolled in their special education program. “I couldn’t sit in on therapy because of confidentiality, and the other students who were there with him” says Cannon, who hopes that if and when schools reopen there will be a better contingency plan in place. For the time being, parents can only work with what knowledge they have and what resources are available. For the families that have students who require more traditional educational approaches each passing day out of the classroom raises concerns for their children’s future. This format of learning isn’t ideal for most, but there are some people who are able to thrive outside of the classroom.
“This is way better, way less stressful,” says Maria Wetsell, mother of two kids including 14-year-old, Will, who was diagnosed on the spectrum at the age of 3. Wetsell is happy to be able to stay at home with her kids, and in the case of her son being out of the classroom has relieved some pressure. “The school environment is really hard for him. He is super sensitive, super hyper, super smart,” says Wetsell, adding that Will displays more on the Asperger side to the spectrum and doesn’t require the same intensive engagement that other students might.
Like many students, not just those who have a developmental disability, the transition from attending courses to having to take their classes home has been difficult. Compartmentalizing is important for those on the spectrum, keeping to tight schedules and having specific spaces for specific activities can help ground those on the spectrum to what they should be focused on. It did take Will some time to ease into bringing school home with him but in many ways the classroom environment presented more distractions for him.
“He struggles in the school environment, he struggles with his peers. He struggles with putting value on tasks,” says Wetsell. “If he already knows the work and already has an understanding of it, he’ll struggle with why he needs to show the work. He has a hard time motivating himself to things he doesn’t value.”
With his course work now held online and in a more concise format, Will’s motivation for school has improved. Wetsell attributes this success to strong communication with Will’s teachers about their expectations and modifying his IEPs under the current conditions.
“Will’s teacher has been really incredible with this transition,” says Wetsell, though she does admit that the online learning doesn’t replace the benefit of Will being in class with his teacher. “He literally focuses the entire time on tasks, responds to questions, has great conversations. He does a lot of learning in this way.”
While online learning is ideal for some students, many parents feel that their children’s education has lost the individual touch. Families have reported that much of the work their teachers send home feels like busy work, packets of worksheets and exercises to perform in lieu of the hours spent in class.
“I like school, but homeschool, I don't really like that much,” says 9-year-old Sam Kolt, a fourth-grader in the Arlington school district. “It's all frustrating for me and stuff. Instead of doing school at home. It feels like I'm doing tons of homework and I don’t like that.” Melissa, his mother, agrees but has additional concerns from any parent's standpoint of bearing responsibility for their children’s progress.
Sam Kolt is an aspiring writer and illustrator. Photo courtesy of Melissa Kolt. “I'm concerned that he's not going to get everything he needs to know,” says Kolt. “For instance, I'm supposed to be teaching him fractions. I feel like I'm not good enough at teaching him that, and a lot of things are built on that education. My concern is that the building blocks, the foundations aren't going to be solid enough for him to get topics later on that builds from it.”
The timeline for when schools will open their doors is not the only uncertainty educators and officials are currently facing. There is also a great deal of work to be done for how the classrooms will look once they are open. On May 21, Gov. Cuomo announced during his daily press briefings that school programs would remain online for the summer. The governor also gave notice that the state would issue guidelines in the beginning of June for schools and colleges to begin the process of planning and preparing how they envision reopening their facilities for the fall. These plans would then be submitted by the July deadline where the proposals would either be approved or denied. Whatever the case may be, going back to normal may not be an option.
“When you sit and think about it, we don't know what normal is going to be,” says Caron O'Brien-Edwards, who is the Director of Community Services for Greystone Programs, a non-profit organization that provides essential services and support for people with autism and other developmental disabilities within the Hudson Valley. One of the projects that she oversees is Greystone’s after school program, which has been placed on pause since the pandemic came to the region.
“We don't know what things are going to look like,” says O'Brien-Edwards. “We're making our reentry plans, and with that we are looking at how many people will we be able to support in our buildings at one time? Will we have to do 50% capacity? Will we have to split it up into a morning session and afternoon session. How are we going to set the physical space, and what will be the workflow? Those are the things that we're strategizing right now.”
In addition to preparing how they will have to operate their programs in the days, months or even years ahead, Greystone Programs is also doing what they can to help prepare the people they support for the new normal. They may not necessarily understand social distancing and why it's important to adhere to the guidelines.
“It's hard because it's your natural reaction to go up to your friends or the people you care about and want to go give them a hug,” says O'Brien-Edwards. Using social stories and role-playing exercises are a few of the ways that Greystone Programs are passing on the concept of social distancing to the people they support. However not all the measures are as easily accomplished through storytelling. Explaining why everyone should wear masks doesn’t make wearing them any easier for those who have sensory boundaries.
“Wearing a mask is very invasive for a lot of the people we support,” says O'Brien-Edwards. “So we’re slowly desensitizing them by getting them used to wearing a mask. Having them wear a mask in their house for maybe one minute at a time. And then, moving up to maybe two minutes or three minutes and just trying to get them used to that because if that's going to be the way we need to go out into the community by wearing a mask then you know that we want the people that we support to be prepared.”
When it comes to bringing education back up to par for families with special needs, advocates are calling for compensatory services when the transition of in person school returns. However, that transition will look different for everyone, including families that have health risks in addition to developmental disabilities. Having to stick to remote learning methods may remain to be the normal for many New York families but students may face even more impacts in the future. With school budget votes pushed back to June 9, public schools may see cuts similar to those that resulted from the 2008 financial crisis. While the outlook on the future of education is uncertain, families and advocates of special education will continue to navigate how to ensure the rights for those who need it.