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The breaking point – –

Posted: September 16, 2020 at 3:57 am

This is the second part of a multipart series. Read Part One, The kids left behind, here.

Josephine Senek cant be left alone.

The 12-year-old with short brown hair and an easy smile cant dress herself. She cant go to the bathroom on her own. She cant pour cereal into a bowl.

But Josephine, who has autism and a rare brain disorder, has always been able to learn.

Before her school closed in March, she was working hard to master skills like washing her hands, counting to 30 and kicking a ball, all in the hopes she will someday become more independent, her mother Krysta Senek said.

Then the coronavirus pandemic hit and stripped Josephine of her school. Her one-on-one aide. Her physical therapy. Her friends. In the blink of an eye, Josephines entire social and academic structure was gone.

I will tell you, she didnt learn anything, Senek said of her daughters experience when Celebrate the Children school in Denville shifted to remote learning as COVID-19 swept through New Jersey. There was not a thing that was really learned.

Instead, Josephines meltdowns became more frequent. She refused to wear her scoliosis brace, adding to her back problems. Most nights, she regressed to sleeping in her parents' bed.

A few weeks into the coronavirus shutdown, Senek heard about a New Jersey mother who killed her special needs daughter and then herself. Her mind raced. What about the other special education parents she knows? Could they be pushed to their breaking point?

I was so emotionally taken by that, and I was shaking, said Senek, of West Orange. Because it got to the point, for us, where it was extremely taxing.

Special education in New Jersey was already an imperfect system, replete with opportunities for students to slip through the cracks, many parents and advocates say. Then COVID-19 arrived and demolished it, jeopardizing the health, development and education of children with severe physical and cognitive disabilities.

More than 200,000 students who receive special education services were sent home for the final three months of the 2019-2020 school year. Their opportunities to learn were often tied to their families' ability to pay for private services or transform themselves into full-time support staff, parents and advocates said.

Some students with special needs were unable to focus and gave up on virtual learning. Social and behavioral skills that took years to develop rapidly deteriorated. And in the absence of physical therapy, many childrens bodies suffered, a devastating backslide in their lifelong battle with disabilities.

It was like a lost cause, said Jaqueline Tobacco, the mother of a special education student in Middletown Township. We were all just trying to stay above water.

Saafir Jenkins Jr., 6, has autism. His parents, Anfal Muhammad Jenkins and Saafir Jenkins Sr., witnessed their son losing speech and handwriting skills when his school closed. Aristide Economopoulos | NJ Advance Media

Special education students remain marginalized, advocates and parents say, as more than 230 districts begin the school year with remote-only instruction. And inequity both statewide and within individual districts leaves children of color with fewer special education resources, said Anfal Muhammad Jenkins, executive director of Newarks Special Education Parent Advisory Council.

Based on the school your child is in and the ward that your child is in, it kind of dictated how much and how many resources you were afforded, she said. That is totally inappropriate, and it is discriminatory.

The pandemic impacted nearly every aspect of special education.

Some schools took weeks, if not months, to launch virtual therapy sessions. Mandated evaluations of students seeking services screeched to a halt. And in-person summer school programs were scarce, in part because superintendents thought state guidelines were inadequate to keep students and staff safe.

Gov. Phil Murphy has said there is a big impetus to try to find responsible, safe ways to be in-person for special education. Yet many students are still waiting at a time when every day is precious, advocates said.

Children with disabilities can take years to master a skill, only to regress in a matter of weeks, said Jennifer Rosen Valverde, an attorney who represents low-income families with children in special education.

I think that we should envision that these children will have lost a year of their schooling when all is said and done, Rosen Valverde said. That one year can turn into three, four years of lost progress depending upon the severity of their needs.

Josephine, who was born without the large bundle of nerve fibers that connects the two hemispheres of the brain, could be one of those children.

Her school faced a steep learning curve in the spring, but is now offering in-person and hybrid instruction this fall, said Monica Osgood, executive director of Celebrate the Children.

We did the very best we could with the challenge we were given, Osgood said.

But Josephine, like many students across the state, begins this school year in the classroom only two days a week. Without an aide at home, she will learn nothing the other three days, her mother said.

I feel forgotten, Senek said. I feel like my daughter doesnt matter.

Josephine Senek lost her social and academic structure when her school closed.Patti Sapone | NJ Advance Media

When Bayshore Middle School closed, Sean Liberatore was told to get on a computer and complete his schoolwork from home, just like everyone else.

The problem? Sean is not like everyone else.

The 14-year-old has autism and learns at a third-grade level, said his mother, Christina Liberatore. He worked on assignments from his Middletown Township home, within earshot of his three older siblings. The situation quickly devolved into a nightmare.

Sean typically the sweetest boy on the planet became increasingly irritable, Liberatore said. He was so annoyed by the slightest noise that he started covering his ears and hitting himself on the head every time someone talked, she said.

The tipping point? The day Sean hurled a mason jar across the kitchen, sending shattered glass everywhere.

I was basically just trying to keep Sean calm most of the day, Liberatore said. That was my main job. Keep him calm so he wouldnt throw things or hit somebody or cry.

Closing schools protected special education students from the coronavirus. But it raised complex questions that officials couldnt answer.

How do you replicate face-to-face, one-on-one instruction for students with disabilities?

How do parents simulate a specialists expertise?

Some parents thought the solution was obvious: Find a way to maintain at least some in-person classes for special needs students.

I wish the governors office and the state could have at least separated the special education kids from the general education, Liberatore said. They kind of lumped them together. They do need way more support, and that is why they get the support in school. Because we cant do that on our own.

When the pandemic hit, federal officials offered vague guidance to schools, recommending they provide services to the most appropriate extent possible.

For some families, that meant no services at all, said Peg Kinsell, policy director for SPAN Parent Advocacy Network.

Obviously, the pandemic caught everybody by surprise, Kinsell said. There was never a real structure or a lot of planning for if something happened and you had to go remote. And that was crystal clear.

The daunting task of teaching special education children at home was a shock that forced schools to do a total 180, said Gerard Thiers, executive director of ASAH, a group that represents private schools exclusively for students with disabilities.

Several private schools academies where public districts pay tuition to send their most severely disabled students pivoted to virtual learning more successfully, parents said. And some public schools were more nimble than others. The result was extreme inequality across the state, Rosen Valverde said.

Sean Liberatore, 13, showing a photo of himself at his fifth-grade graduation. Sean has autism and struggled learning from home when his school closed. Ed Murray | NJ Advance Media

The states nearly 600 school districts seemed to have 600 different plans, Kinsell noted.

I have one family where every single person in that family is dyslexic, Rosen Valverde said. How are they then supposed to teach their second-grader, their third-grader how to read?

Lauren Bergner, the mother of a 6-year-old with autism, was shocked when her son came home with worksheets, considering he cant write.

He doesnt even know how to write his name, said Bergner, of Wood-Ridge. So how could you give him these worksheets?

The loss of in-person learning and therapy did immeasurable harm to children, parents say. Many have asked for in-home instruction this fall if their schools are not open, saying it is the only way for their children to receive their mandatory services.

But navigating contractual issues and legal liability makes the process difficult.

Districts are overwhelmed trying to determine the best way to deliver services, said Betsy Ginsburg, executive director of the Garden State Coalition of Schools.

I think both parents and schools are really caught in a bind in this situation, said Ginsburg, who represents about 100 suburban districts. It has just become a very challenging situation.

Liberatore tried everything she could with Sean, making schedule after schedule on whiteboards. They took daily walks to keep him calm. She asked him to complete worksheets from two years ago, just to keep him engaged in academics.

But none of it helped him focus on his current assignments.

He is just so confused, because he cant express himself, Liberatore said. God knows what is going on in his head.

Liberatore knows what Sean needed: A classroom. A teacher. Specialists who are trained to work with children with disabilities.

She witnessed her son break down and cry for weeks on end.

It is really just heartbreaking watching that from your child, Liberatore said. I am not even concerned about my childs reading level. I just want him to not hurt himself, and I think that is not a lot to ask for.

Middletown special education students were going to be in their self-contained classrooms five full days each week this fall, Liberatore said.

But in late August, the district cut back to half-days for special education, Liberatore said. Shes desperately hoping Sean can reclaim his old life this week, when he begins classes.

I am afraid of what will happen to my son if there is no school for him, she said.

Sean Liberatore at home in Middletown.Ed Murray | NJ Advance Media

Lucy Adlers daughter needed help.

A first-grader last school year, Isabella was intelligent and articulate, yet met sight-word flash cards with a blank stare.

In January, a psychologist diagnosed the curly, brown-haired girl with dyslexia. She just needed a school district evaluation, scheduled for March 30, to begin receiving special education services.

Then schools shut down, and the evaluation was canceled. Adler was left in limbo.

Under federal law, Caldwell-West Caldwell Public Schools had 90 days to evaluate Isabella from the date they learned of the independent diagnosis. But the evaluations are required to be done in person, and the entire state was locked down to contain the spread of the coronavirus.

Adler felt her daughter was falling further behind with each passing day during a critical year for developing reading skills.

This 90 days was like the bane of my existence, Adler said. When 90 days came and went and there was no test, they were like, Well, it has to be face to face. There is nothing we can do. And that was it.

Like other districts, Caldwell-West Caldwell faced an incredible challenge and responded as well as it could with intelligence and care, superintendent James Heinegg said.

The district eventually performed the evaluation July 7, six months after the initial diagnosis. The results showed Isabella has dyslexia, and the district is drafting her individualized education plan, Adler said.

Already behind, Isabella will begin this school year in virtual classes until at least Oct. 7, when the district has targeted reopening.

She has completely fallen through a crack, Adler said.

The pandemic has turned special education into a waiting game. Waiting for evaluations. Waiting for compensatory services for missed therapy sessions. Waiting just to get back into school.

Some children of color have to wait even longer, parents said.

Newark Public Schools saw dramatic inequity within the district, said Saafir Jenkins Sr., the father of a 6-year-old with autism.

Some schools in the citys East and North wards, which have more white and Hispanic students, were able to provide virtual therapy more quickly, Jenkins Sr. said. Other schools in the South, Central and West wards, which serve predominantly Black students, didnt offer related services before June in some cases, Jenkins Sr. said.

All Newark students who needed therapy were addressed in the spring, district spokeswoman Nancy Deering said. But thats not what families experienced, Jenkins Sr. said.

It really is telling that that type of equity hasnt been achieved in Newark alone, let alone in the larger landscape of New Jersey as a state, said Jenkins Sr., husband to Muhammad Jenkins. It is certainly something that needs to be evaluated and addressed.

Saafir Jenkins Jr. works on his math while his parents, Anfal Muhammad Jenkins and Saafir Jenkins Sr., watch.Aristide Economopoulos | NJ Advance Media

Many parents and advocates point to the summer as a missed opportunity.

Schools could have used July to tackle the backlog of evaluations which they are still legally required to complete and restart in-person physical therapy, Kinsell said.

Instead, families are still waiting for evaluations, while a large number of schools have yet to offer in-person services, she said.

Once you could do that safely, that should have been the next step, Kinsell said.

The biggest misstep may have been the failure to restart the Extended School Year summer program in person. By early June, many districts had decided the program would have to be virtual. Then on June 12, Murphy announced guidance for summer schools: Follow the same rules as summer camps.

The directive came as soon as it was possible to provide guidance that would keep students and staff safe, said Mike Yaple, a spokesman for the state Department of Education.

But superintendents quickly panned the guidance, saying it was inadequate and came far too late for a safe reopening.

ASAH had pressed the governor to allow in-person summer instruction before Murphys guidance, Thiers said. After school leaders saw the safety procedures, only about 20 of the 130 schools the organization represents were able to reopen, he said.

The vast majority of public schools provided a virtual program, but some families opted out to give their children a break from the stress of remote school.

Kristi Hutchings, the parent of a kindergartner on the autism spectrum, assumed children would be a top priority. But she had a bad feeling when a reopening plan for casinos was released before a summer school guidance for special needs students.

Somebody in education should have really thought about what extended school year looks like, Hutchings said. It wasnt camp.

With schools in scramble mode yet again, theres reason to worry about special education this fall, said David Hespe, a former state education commissioner.

When everyone becomes a priority, what normally happens is marginalized students become even more marginalized, he said.

Richelle Lee works with her son Eli, 8, at home in Willingboro. Eli has autism and has been home without special education services. Patti Sapone | NJ Advance Media

Finally alone, Richelle Lee collapsed onto her living room floor and broke down.

She had just finished cleaning up after another long day at home with her son, Eli. And Lee couldnt take it anymore.

I am sitting there, and I am just crying, she said, because I dont know what the hell is going to happen next.

The 8-year-old with autism was thriving before The Archway School at Coopers Poynt in Camden was forced to close. Now he was shutting down without his full-time aide and support services.

Eli, tall and skinny with dark, curly hair, stopped eating even his beloved bacon. He soon stopped talking as much as he had. He started crawling underneath his bed to feel squeezed between the floor and bed frame to meet his sensory needs.

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The breaking point - -

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