Canaan family feels children with special needs deemed 'nonessential' during pandemic - Kennebec Journal & Morning Sentinel

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Justine Capraro talks to her oldest son, Anthony, on Tuesday as the family plays outside at their Canaan home. Michael G. Seamans/Morning Sentinel

When the pandemic closed schools back in March, the Capraro family in Canaan were anxious. Their two oldest children, Anthony and Michael, would lose their in-school support services.

The two brothers, 8 and 6, both have autism.

Their parents, Justine and Chris Capraro, say that the two have individualized educational plans through Skowhegan-based Maine School Administrative District 54, which includes specially designed instruction, direct speech therapy, direct occupational therapy and physical therapy.

“Since March 13, Justine and I, like every other family have started ‘crisis schooling’ for our three boys, practicing social distancing and remote learning” Chris Capraro said. They have another son, Carlo, 3, at home. “When schools closed their doors, so did my sons’ therapeutic services.”

Justine Capraro, holds her oldest son, Anthony, with her youngest Carlo, left, as they prepare to go outside Tuesday at their Canaan home. Michael G. Seamans/Morning Sentinel

Now, months later, the family is finally starting to get some answers as the school district is starting to make plans for summer programming at the school. But in the meantime, their children’s progress has regressed significantly. Previously, assistant superintendent Jon Moody said that the district is planning to offer in-person programming for those that need 1-to-1 assistance.

Chris was furloughed from his job at New Balance in April, so he has been able to stay home with his wife to care for their children.

“Michael’s daily speech, physical and OT therapies were quickly halted with no timeframe of when they would be continuing,” Chris Capraro said. “My sons rely on their therapies for their mental and physical development and with a snap of a finger, they were shut down and my wife and I were suddenly handed the job titles of speech therapist, occupational therapist, physical therapist, behavioral support professional and teacher.”

Anthony Capraro, right, smiles Tuesday as his family dons their shoes to play outside in the nice weather at home in Canaan. Michael G. Seamans/Morning Sentinel

The services for each child differ. Anthony receives between 2 and 2.5 hours weekly in individualized services, and Michael receives closer to 2 each week.

“Our whole lives have been changed and modified,” Chris Capraro said. “Maybe it’s time for the Special Education Services Department to come up with a modified plan for our children who are suffering unnecessarily. It is not right for our children to be left behind as a side note to this pandemic.”

The couple fears that they are not able to do enough for their kids and because of the pandemic, their progress has been set back. The boys, who attend Bloomfield Elementary School, have had major setbacks being out of the classroom. The oldest, Anthony, has been so overwhelmed with the changes, that on two separate occasions, he has broken his bedroom window and a bathroom cabinet.

“It wasn’t so much about their academics being taken away for us,” Justine Capraro said. Before attending Bloomfield, Justine was homeschooling Anthony at home. “The regression have been pretty major. The biggest thing was the social interaction and daily routine, which is what he needs to function.”

“The physical aggression is something we have not seen in a long time,” Chris Capraro said.

Justine Capraro holds her oldest son, Anthony, as he becomes emotional while playing with his brothers Tuesday outside at their home in Canaan. Michael G. Seamans/Morning Sentinel

He says that Michael has become physically aggressive with their youngest child, which often requires them to separate the two on a daily basis. Additionally, he is no longer potty trained, which is something that his in-school support was able to help him achieve.

Though frustrated, the two realize this is not at the fault of teachers or the superintendent. In recent weeks, the couple has received services outside of the school setting, including from Evaluating Circumstances and Creating Outcomes, or E.C.C.O., in Skowhegan; and through the Family Respite Program through National Alliance on Mental Illness Maine.

E.C.C.O. board-certified Behavior Analyst Elijah Soll says that his organization is a medically-necessary service, but is not education based. When schools closed, E.C.C.O. did not go away, Soll said.

Justine Capraro interacts with her middle child, Michael, who is also autistic, as they play outside Tuesday at their home in Canaan. Michael G. Seamans/Morning Sentinel

“There’s only one treatment that is evidence-based for autism, which is applied behavior analysis,” Soll said. “We use principles of applied behavioral analysis, which is mostly based on positive reinforcement.”

This is done by teaching coping skills, developing contingencies and contrived reinforcement so that the children can experience natural reinforcement.

“If a kiddo is screaming and you don’t know why, we analyze the behavior and try to replace the screaming with a request,” Soll said. “We try to figure out exactly what’s going on. Kids with autism don’t have that natural reinforcement, so we create contingencies and set that up for them.”

Anthony Capraro, the oldest son of three, looks for butterflies to catch Tuesday in the backyard at home in Canaan. Michael G. Seamans/Morning Sentinel

Though services haven’t halted because of the pandemic, Soll says that it’s been difficult to provide services because some families are not comfortable having behavioral health professionals in their home and some of his staff members are not comfortable going into homes. Additionally, the BHPs are now limited to one family that they can work with, opposed to upwards of five. The Capraro’s started using these services after a brief pause in the previous weeks.

Soll says that they try to use telehealth methods when possible, but it’s not ideal because many children need services in-person.

“It’s a very hands-on service,” Soll said. “(The pandemic) has definitely made things a little difficult.”

Through NAMI Maine, the couple receives care through the Respite Program, which provides families with a provider for in-home care and to give parents a break for those “raising kids with special needs.”

“The Family Respite Program is very unique to the state of Maine,” NAMI Maine CEO Jenna Mehnert said in a phone call. “It’s a program that provides a planned, intentional break for parents raising kids with special needs.”

Mehnert says that about 75% of the kids in the program have a mental health or autism diagnosis. When the pandemic was declared, she says that the organization worked closely with the state to increase the number of hours for families receiving the service from 16 hours a week to 26.

“When COVID came, right away I knew that families would lose all supports,” Mehnert said. “Knowing that this was going to be a struggle for families, we asked the state to increase the number of hours.”

Carlo Capraro, the youngest of the three boys, plays with his bubble wand Tuesday at home in Canaan. Michael G. Seamans/Morning Sentinel

Mehnert says that she has a child at home with autism, which is why she was able to identify the importance of this increase to help families. Additionally, she has worked with other state organizations to shorten the application process for new families and providers to help them get through quicker than normal.

“Most providers stopped any services in the home, so families that face those significant challenges have really been struggling a lot,” Mehnert said. “We are happy that NAMI had the ability to find a way to keep it working so that families get some kind of relief and support, to have someone else there because it is tough.”

The hardest thing for the Capraro family, Chris says, is that for so long, there was no plan and they are just now seeing some possible ideas.

“It feels like my kids … have been considered nonessential,” Chris Capraro said. “Kids on the spectrum and those dealing with mental health diagnosis have taken a back seat. And we know it’s not just us and that there are other families going through the same thing.

“We are not looking for sympathy, we just want people to have some sort of small idea of the reality of what is happening to households that are being forced to keep their special needs children from receiving the free and appropriate education that they are legally required to receive.”

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