A Worcester student has waited 10 months to receive access to educational assistance that was proposed by Worcester Public Schools officials and agreed upon by he and his mother through a mandated program.
Eugene “Gino” Berthiaume, a 15-year-old deaf child who attends the Marie Jean Philip Elementary School at The Learning Center for Deaf Children in Framingham, was diagnosed at birth with congenital cytomegalovirus (CMV) and suffers from bilateral hearing loss, developmental delays, epilepsy and cerebral palsy.
Everyday life isn’t easy for Gino and he gets easily frustrated. Sometimes that frustration leads to aggressive tendencies. Gino lacks self-care skills and has a tendency to obsess on single subjects — for instance, his love of professional wrestling, according to his mother, Kelly Rawson
In January, the Worcester Public School system offered Gino in-home services from an Applied Behavior Analysis (ABA) therapist for 1.5 hours a day for five days a week.
The in-home services were added to Gino’s IEP [Individualized Education Program] through a reevaluation on Jan. 30, 2015. The IEP is a statement written by the home school district, in this case Worcester, that outlines the needs of special education students as part of state-regulated guidelines.
The in-home services provided by the ABA therapist were supposed to start on Jan. 30, 2015 and end Jan. 30, 2016 — just more than two months from now.
“The IEP is the key document in detailing the services to which a special education student is entitled. If the Worcester Public Schools cannot meet any of its obligations under an IEP, it should interact with the student’s parent or guardian, reconvene the team which developed the IEP, and determine how best to address the young person’s needs,” said School Committee member Brian O’Connell.
According to Rawson, Kelly O’Donnell, Worcester Public School’s special education IEP Evaluation Team chairperson, told her that they have yet to fill the position because they haven’t been able to find a qualified candidate.
The longer Worcester takes to find a qualified candidate, the longer the IEP provision remains unfulfilled — and the less progress Gino could be making.
According to the Massachusetts IEP process guide, “The IEP does not serve as a guarantee of progress. However, school districts must be aware that IDEA-97 clearly states that a school district must make a good faith effort to assist the student in making progress towards the IEP goals.”
A search by the Sun for an open ABA therapist position on the search engine SchoolSpring, which posts open positions for Worcester Public Schools, came up empty.
According to Kay Seale, manager of WPS Special Education and Intervention Services, the school department is unable to discuss any aspect of Gino’s IEP due to the confidentiality provided for by the Family Educational Rights and Privacy Act (FERPA), a federal law that protects the privacy of student education records.
Rawson says the in-home service was proposed by the Worcester school district as an alternative to Worcester paying for Gino to attend the Marie Jean Philip Elementary School’s residential program.
“In that program [at the Philip School], the teachers and staff try to go above and beyond a child’s IEP,” Rawson said. “And what the dorm program is designed for is independent living skills, safety awareness, self-care, navigating the community, working, and learning trades.
“This is what I’ve been pushing for, and the Worcester district has always said no.”
The residential program is an intense special-needs program that would require Gino to stay overnight in a dorm at the school Mondays through Thursdays. Worcester currently pays for Gino to be transported back-and-forth those four days from the Framingham school.
Gino hasn’t been accepted into the dorm program, and his mother isn’t sure whether he will be. In the meantime, what can be done to help Gino get the services he needs?
When Gino was 3, he was diagnosed with severe seizure disorder. At that time, he transitioned from Early Intervention into the Worcester school district.
Rawson didn’t feel as if Worcester’s program at the ALL [Accelerated Learning Lab] school, which involved an interpreter, provided Gino with enough services to meet his needs. She also felt that Gino would be isolated and that there wouldn’t be enough classroom interaction, so she began to push for Gino to attend the Philip School.
According to Rawson, it took roughly six months for the Worcester school district to agree to allow Gino to attend Philip.
The district is opposed to allowing Gino to attend the dorm program at the Philip School because the administration wants to place Gino in the least restrictive environment available, according to Rawson.
“Gino displays certain social skills [self hygiene and toileting, light cooking, light cleaning, responsibility for belongings, academic work] in the classroom environment, but does not carry them over in the home. He has much more success with the proper professional support,” Rawson said. “He has so much potential with the proper tools and resources.”
A recent psychological assessment by psychologist and researcher Amy Szarkowski of Boston Children’s Hospital seemed to fortify Rawson’s belief that her son would benefit from a residential program.
Szarkowski recommended that Gino receive respite care due to his need for constant supervision and direct involvement. The residential program at the Philip School would meet the recommendation for respite care and would provide some relief for Gino’s caregivers.
Szarkowski also stated: “Gino requires and is highly likely to continue to require direct instruction and assistance with performing many daily skills. He needs supervision and guidance to perform many tasks.”
Gino is currently in the intense special needs program for children of high school age at the Philip School for 11 months during the year. In August, he has no formal instruction or direct intervention.
Szarkowski also recommended extended year services — meaning additional services in August — and wrote that, although Gino continues to show improved learning abilities, his “retention of learned information is limited.”
“Gino requires an intensive special needs program and individualization of the academic curriculum, with an emphasis on life skills training. He continues to require a program that includes academics as they relate to real-life functioning,” she wrote in the assessment.
Even with all Gino has to deal with daily, it’s not difficult to understand why his mother wants the very best for him.
“I’m always impressed when I observe him at school. The maturity and independence he displays is refreshing, not to mention his self pride. It’s more proof to me that he makes strides when he’s with peers and deaf role models. I have put so much pressure on myself for 15 years trying to be his teacher, therapist, advocate, nurse, etc., when he just wants me to be mom. It’s taxing for me to wear all those hats and trying to carry over anything he learns at school,” Rawson said.
Gino communicates through sign language and when he does he excitedly describes his life and his family, including his older brother Jarred — called “JB” by Gino. According to Rawson, Gino sees his brother as his idol.
Like many 15-year-olds, Gino enjoys WWE professional wrestling and is a huge fan of the popular wrestlers John Cena and The Undertaker.
“He eats, breathes and sleeps the WWE,” his mother said.
Gino also likes bowling, basketball, soccer, playing Xbox, and watching monster trucks and motocross.
Szarkowski describes Gino as being in a good mood at their meeting, and socially interactive. In her assessment, she writes: “Gino impressed as smiley, easy to engage, polite and social. He frequently said and signed, ‘thank you’ and was relatively well able to regulate himself for the duration of the testing, when supports were in place.”
O’Connell, the school committee member, said: “Even if Worcester cannot provide the exact services mandated by an IEP, it still needs to work with the team in formulating, and then implementing, an alternative solution. The student and his family deserve prompt priority attention to their concerns, especially if and when the passage of time, for whatever reason, leaves a student without key educational support which the IEP guarantees.”