It's been a full month since the coronavirus pandemic prompted schools to close their buildings and switch to remote learning — and there doesn't appear to be an end in sight.

While virtually all student households have faced vast adjustments, meltdowns and triumphs, families of special-needs students still face some massive unknowns when it comes to the system's "new normal," which could last until the end of the school year.

"It's definitely been a challenge," according to Peg Kinsell, policy director for SPAN Parent Advocacy Network, which works with families statewide.

Kinsell said communication with school districts, provision of services and questions about occupational, speech and physical therapies have been the first critical round of concerns for special-needs students now learning at home.

The recent move to allow special education services to be delivered remotely is necessary given the public health crisis restrictions, though Kinsell noted there were good reasons for those regulations being in place.

Therapies "get more complicated" and there's less accountability when it comes to the specifics of a student's Individualized Education Program, or IEP, Kinsell said.

According to the state Department of Education, home instruction/services during the pandemic should be consistent with a student’s IEP "to the most appropriate extent possible." It advises districts to talk to parents about what supports are needed and how their plan might look.

No substitute for classroom

Tatsiana DaGrosa said even as an already involved parent to her nearly 15-year-old son, she hadn't realized until the pandemic "how much additional support he needs to be successful in school."

DaGrosa's son is a freshman at Atlantic County Institute of Technology. She said in talking with other parents early on, the stress of trying to self-navigate school from home had some students essentially "giving up" amid the new pressure.

DaGrosa said she’s glad they were able to share their concerns with school district officials and communicate that the system needed to be worked on.

Saafir Jenkins and Anfal Mohamad-Jenkins have a 6-year-old son with autism who is in out-of-district placement at a school in Verona. They are also driving forces of the Newark Special Education Parent Advisory Council.

The Jenkins family said their son's school has been providing some form of live instruction, but in talking to families through Newark SEPAC, "parents are feeling lost," as they've been told students in the state's largest public school district have been given packets and not getting live instruction at all, compounded by a lack of communication from school district employees.

"Students getting special education and related services need a little more one-on-one than just to have a packet," Mohamad-Jenkins said.

Therapy on hold

Jenkins said their son has not been receiving speech or occupational therapies that he normally receives multiple times a week, and they are waiting to see what might become available under the rollback of allowing such therapies to be delivered remotely.

Kelsey Porter, whose 5-year-old son has autism, is similarly awaiting any resumed therapies as called for in his IEP. The family lives at Joint Base McGuire-Dix-Lakehurst, with their son attending school in Pemberton Township.

Porter said probably "most challenging" is the fact that her son is very schedule-oriented, so it's taken time for them to get focused and understand the change over to learning at home.

She said she's thankful for her education background in trying to fill some of the gaps that come with the loss of their normal routine, while also being frustrated by an utter lack of communication about how her son’s therapies will be made up.

As the state has allowed for tele-therapies during the pandemic, Kinsell said there has been some issues with waivers being required to receive them. She said some waivers leave things unclear as to whether future or "owed" services might be in jeopardy, so they have had to stress to families to read every line before signing.

For special-needs students who typically have an aide in the classroom, SPAN also has approached the Department of Education to make sure paraprofessionals are part of tele-learning "whenever possible to try and keep that involvement going," Kinsell said.

"Education for these students is supposed to be individualized," Jenkins said, but packets distributed that are exactly the same for all students of the same grade level puts students with IEPs at another disadvantage, as they might be looking at subject matter for the very first time, or may have covered it long ago.

Mohamad-Jenkins said she's seen this situation magnify a "huge equity problem" for Newark schools — "some are highly resourced and others are hardly resourced."

When Atlantic County Institute of Technology returns from spring break, it will take on a reduced period schedule — instead of 84 minute-long classes, they will be 60 minutes long, leaving two hours for teacher check ins each day.

DaGrosa said related services were originally being delivered in a packet of worksheets, "which would not work" for her son, who views such work as punishment, so she was quick to communicate to teachers and providers to ask for a virtual check-in instead.

The Jenkins family, DaGrosa and Porter say that their typical roles as advocates for their children have come into play amid remote learning, as they keep detailed records of what therapies have been missed and what their biggest concerns are for their child's long-term educational needs.

DaGrosa said this is the time of year that schools would be doing observations and interviews with students and parents of special-needs students to develop robust IEPs for next year, making them as specific as possible, as "their well-being and their lives depend on it."

DaGrosa said while she empathizes with child study team members adjusting to the pandemic restrictions, she feels it is important not to water down IEPs or put them off until returning to school.

Kinsell shared concern for the special education population who have been transitioning to adulthood, now losing their last three months of crucial training. She notes many special-needs students go to school until age 21, and the last year is focused not only on education in the classroom but also job sampling, working with job coaches and travel training.

Kinsell adds about 90% of the activities are in-person, one-on one or in close proximity to instructors to work toward successful daily living skills.

Mohamad-Jenkins said beyond any concerns about regular schoolwork, their son also has become more emotional, as none of his usually routines have carried over — no school bus or physically playing with friends.

She said she’s "quite sure there are other students" dealing with new mental health stress, which needs to be addressed by schools to help ensure that students are even in a “place” to access online platforms and continue with remote lessons.

“Validating each and individual emotional response to the situation is necessary to be effective, to provide the support that they need and to be present for the long haul,” DaGrosa said.

Porter said this is unprecedented and “we need to all walk with a little grace - but now that it’s been a month, I’m expecting professionals to be a little more professional and get their butts in gear. Some are doing that better than others."

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