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Special needs students falling behind

Online services may not be the best

As schools remain closed and offer virtual distance learning while the COVID-19 pandemic runs its course, many parents worry that their children are regressing, especially students who need special education services.

Students ages 3 to 22, who demonstrate a need for specially designed instruction throughout the school year, receive special education services under the state Department of Education, according to the department. Academic, counseling, speech, language and audiology services, occupational therapy, behavioral and psychological support and one-on-one aid are provided.

Parents of special education students say those offerings drastically decreased when classrooms closed due to the coronavirus pandemic and the implementation of emergency stay-at-home orders.

Rachel Steven said that her 6-year-old son Hunter, who was diagnosed with severe autism and attention deficit hyperactivity disorder, has regressed socially, behaviorally and emotionally since transitioning to online classes and the changing of his daily school routine.

Public school facilities have been closed to students since March 19, and while most teachers and staff continue to work remotely through distance learning opportunities, such as email, Zoom or school websites, families still are concerned that their children will fall behind for the next academic year.

“We appreciate (the teachers’) efforts in this time of uncertainty, however, with the severity of his disability, telehealth and distant learning seem to have caused more harm than good,” said Steven, who’s also the co-founder of Celebrating Awetism and Neurodiversity. “I know this is the reality for many parents in Maui as well.”

“I believe the general education students will regress, as well as our special needs students that make up roughly 30,000 students under a IEP (Individualized Education Plan) or 504 plan in the state of Hawaii,” Steven said.

She said that many families are having “major challenges” accessing remote services under their IEP, which helps protect children with disabilities and offers support services.

The other top concerns among parents with special needs children include changes in routine and structure, as well as the uncertainty of when in-school classes will resume.

“Thousands of special needs students in Hawaii are missing out on support and services that can’t be learned remotely or replicated at home,” said Lahaina resident Kayanna Bayly, whose 8-year-old son, Blake Bayly, was diagnosed with Autism Spectrum Disorder, ADHD and Oppositional Defiant Disorder. “I understand closing schools was necessary. I’m not blaming Hawaii DOE for closing schools, but it doesn’t mean you stop offering services to children with special needs.”

Children living with autism experience varying difficulties with cognitive function, social and verbal communication or behavior. Among DOE students, roughly 12 percent are children with special education needs, Bayly said.

She said that parents at some schools have not been notified if and when their children will get the special education services previously received in school.

Some special needs children may thrive with distance learning, but overall, they need structure and routine that a typical school day provides. From the time the bus picks up a child to when it drops them off, many students were assisted by registered behavior technicians.

Steven said that Hunter used to have daily access to Applied Behavior Analysis therapy and now has none since school closed and stay-at-home, work-from-home orders were implemented.

Hunter was spending five days a week on the computer during the school closures, but Steven said that her son started to withdraw from the computer, asking for “dim lights, no noise, to just decompress.”

He now works twice a week with a Hawaii Behavioral Health therapist, who also has noticed the different challenges that children face with distance learning.

“Having their routine flipped upside down has been very painful,” Steven said. “My child on average will hit me over 1,000 times while I try to help him and his service providers gain instructional control on the computer.”

Although school providers have made attempts to assist Hunter and the family, Steven said that they have taken a step back from the computer “for my safety and his, as well as his well-being.”

Having access to outdoor activities has been helpful. The sand and ocean help Hunter to maintain alertness and awareness, which is “more effective than any form of medication in this world,” she said.

“It is imperative to his mental health and safety that he has access to beaches,” she added.

Steven is a member of a group called Together For Our Keiki — a collection of parent education webinars, Zoom conferences and parent support meetings with professionals.

In the group, she’s picked up advice and tips to help children who have varying behavioral or social challenges. She also researches strategies daily as a parent and advocates for autism awareness.

In Bayly’s case, the child’s mother has yet to receive any homework or therapies listed in the IEP since school has been out.

“Speech and language therapy stopped. Counseling stopped. Occupational therapy stopped. One-on-one paraprofessional stopped,” said Bayly, a single mother who recently fell into the unemployment pool. “Some special needs students have been going weeks without services and supports. Parents have been thrust into wearing different hats and somehow substitute for all of them.”

Like many parents, she has done her best to try and keep her son on track. This includes researching homework assignments best suited for Blake’s needs and consulting with others for tips.

“Without these services, our children will start to regress,” Bayly said. “He was progressing, and he was reading great, and then we were reading a book the other night and now all the sudden he had a meltdown, he recovered quickly, but he started lisping, and he felt very bad about himself.”

Staying home has been a positive for her son at times because the environment is calmer and less stimulating, but every child requires different support and accommodations, she said.

“Parents advocate all year long and hire lawyers for better access to the tools, services, supplemental aids and resources needed for their child,” Bayly said. “With school closures, structure and routines have gone out the window.

“Many parents are seeing their children regress. Some parents say behaviors have escalated, frequent meltdowns and tantrums. Many parents are at their breaking point.”

Resources available to parents of children with special needs follow:

• DOE telehealth hotline. (844) 436-3888 toll free, 8 a.m. to 4 p.m. weekdays excluding holidays. Public school students and families speak with a registered nurse or nurse practitioner. The student may be connected with other service providers, such as DOE support staff, social workers, school psychologists or other medical referrals.

• Hawaii Applied Behavior Analysis therapy. It focuses on improving social skills, speech and reading, as well as basic education about hygiene and punctuality. Maui, Oahu, Hawaii island and Kauai offer ABA services in the form of after-school programs, in-home programs or at Hawaii Behavioral Health clinics. Hawaii ABA also offers in-person and online workshops for educators, parents, students and practitioners. The website is www.hawaiiaba.org.

* Dakota Grossman can be reached at dgrossman@mauinews.com.

TIPS FOR SPECIAL NEEDS CHILDREN

Kristen Koba-Burdt, director of clinical operations at the Behavioral Health Support Office at Hawaii’s BAYADA Home Health Care, offered tips and guidance to families with children with autism amid the COVID-19 pandemic. Koba-Burdt is a licensed and board-certified behavior analyst.

• Create a structured schedule. Develop a schedule that works for the needs of everyone in the household. Take into consideration any work-from-home requirements, and “what your child can do successfully during this time, such as a preferred leisure activity,” Koba-Burdt said. Creating a daily schedule “allows your child to know what to expect.”

• Use visual supports. Customize to your child’s needs. Some children may do well with items written out, whereas others may need pictures, she said. There’s a variety of apps available for creating activity schedules, as well as using online images or photographs taken at home. “Visual supports can help with the scheduled structure of the day,” she said. “If you’re working with your child on school activities, use visuals to structure what tasks they need to complete as well as steps within the tasks.”

• Use visual/auditory reminders. “Items such as timers can be beneficial in helping a child transition from one activity to the next,” she said.

• Keep preferred items on hand. Rotate toys and other preferred items. Watch for signs that may signify a child getting bored with a toy or activity and swap out when needed.

• Motivation. Completing tasks, like school work and activities, and following up with preferred items, snacks, fun activities or a break, will help the child stay motivated, Koba-Burdt said.

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