This article was originally published in The Notebook. In August 2020, The Notebook became Chalkbeat Philadelphia.
Giovanni DelGiorno was 3 years old–and had already started to read–when he was diagnosed on the autism spectrum. Thus began for his mom, Nicole, an arduous journey to get for him the support and services he needs.
Quickly, she became familiar with Elwyn, which offers early intervention in Philadelphia at various sites for very young children identified with special needs. And not long after that, she began her search for an appropriate public school placement for when he was ready to begin kindergarten.
Now 6 years old, Giovanni is doing well in a special kindergarten classroom at Bregy Elementary School in South Philadelphia, not far from his home. DelGiorno had scouted the options for her son and was happy to have him at Bregy, even though his neighborhood school is Stephen Girard. His autistic support class has 10 students, several aides, and a teacher she likes.
Giovanni’s transition from early intervention to public school was smooth, his mother said.
Not so for Tracy Hearst-Purdy’s son Bryce. Born with Down Syndrome, and given a second diagnosis of autism, he started kindergarten six months after he was scheduled to do so, because Hearst- Purdy disagreed over his placement and felt she wasn’t adequately prepared or consulted about it.
Hearst-Purdy said she thought she was doing everything right–faithfully attending meetings with Elwyn and school district officials, helping to develop his Individualized Education Plan (IEP), registering Bryce at William Rowen Elementary, her neighborhood school in West Oak Lane, and regularly attempting to communicate with the principal there.
But, she said, school officials placed Bryce in an autistic support class at Morrison Elementary in Olney, about a 20-minute ride from her house. She was not at a meeting at which this was decided, she said.
It has turned out okay–she thinks his teacher is “awesome,” there are nine students in the class, and Bryce is making progress. But she would still prefer he could attend his neighborhood school in a setting where he had more interaction with nondisabled peers.
“I would have been happier for him to be at Rowen,” she said. “It’s our neighborhood school, it’s close to our home and close to our neighbors and his peers in our neighborhood. Being so far away, he doesn’t get that interaction with those children.”
Being a squeaky wheel
For parents of infants to 5-year-olds with special needs, getting the services to which they are entitled, and managing their transition to kindergarten, can be a full-time job.
“Unfortunately, the squeaky wheel is the one that’s heard,” said Hearst-Purdy. “Navigating the system is very tough. I don’t mind being the squeaky wheel, but what’s going on with all the other kids who need services but parents don’t know what their rights are?”
Under the 1973 Individuals with Disabilities Education Act (IDEA) and other statutes, children with disabilities are entitled to a “free and appropriate education” in the “least restrictive environment.” IDEA and other state and federal laws and regulations set out in great detail the rights of disabled students, along with deadlines and requirements for meetings, updates and re-evaluations of students’ progress compared to the goals set out in their IEPs.
Early intervention services for children ages 3 to 5 are contracted, through the state Department of Education, to Elwyn, a private provider that specializes in services to the disabled. The state Department of Education and Department of Public Welfare, and its Office of Child Development and Early Learning (OCDEL) are also involved, so coordination during the transition phase can be tricky.
Anna Perng, parent of two sons on the autism spectrum, has testified multiple times before City Council and the former School Reform Commission about the issues faced by parents seeking to enroll their special needs child in the District from early intervention.
“A common theme, once a student enters the transition phase, neither system [Elwyn or the District] wants to take ownership,” said Perng. “If a reevaluation needs to happen, parents don’t know who to call to make sure it is happening.”
The Education Law Center, which closely monitors the District’s compliance with state and federal laws regarding special education and children’s rights, filed a complaint in August 2017 with the Pennsylvania Department of Education (PDE). It alleged that hundreds of children with disabilities were not receiving timely evaluations and special education services when entering District schools.
A PDE investigation concluded that for the 2017-18 school year just 4 percent of students had received timely re-evaluations within the 60 days required by federal law. And of those children who eventually received reevaluations, only a third of them received a meeting within the required 30 days to update their IEP.
The problems are especially acute for parents who don’t speak English. While translators are often provided, written materials, which can run 30 pages or more, may not be available in the parent’s native language. The state is supposed to help with this, but that doesn’t always happen smoothly and is often dependent on grant money and availability of people capable of doing the translations. The state’s October 2018 report, which was based on a random review of files, concluded that the District “has failed in its obligation to ensure that evaluations are provided and administered in the child’s native language” or in a way that will “yield accurate information on what the child knows and can do academically, developmentally, and functionally.” The District first lost a class action lawsuit on this issue in 1986.
The District regularly holds workshops for parents to aid them in the transition process through its Family and Community Engagement Office. Elwyn gives parents a thick booklet with information and deadlines.
“Although the school district has tried to improve the transition meetings, there is still a lot of confusion of what students’ civil rights are and what ‘least restrictive’ means,” Perng said.
The School District would not provide anyone for an interview about the issues it faces with helping students transition from early intervention to school. But it did update its protocol for this school year and is coming closer to compliance; PDE closed out the complaint, but is continuing to monitor the District closely.
Under the new protocol, the District has created a more centralized computerized system, steering greater oversight through its Office of Specialized Services and assigning an identifying number to all Early Intervention (EI) students. The system uploads the EI packets obtained directly from Elwyn, and schools are responsible for confirming EI registration for communicating directly with the District’s Early Intervention Coordinator. The new database can also be accessed directly by school principals, special education liaisons, and school psychologists, and alerts schools to children within their catchment area who need evaluations. It has also improved its documentation for getting needed information and parental consent for reevaluations.
In light of the changes, ELC legal director Maura McInerney said that this year, “anecdotally, we are getting fewer complaints about the transition process. They have substantially changed their procedures to make sure children are promptly evaluated.”
One of the contentious issues in student placement–demonstrated in Hearst-Purdy’s case–is what “least restrictive environment” means. Often, for students with disabilities, the District will steer the student to schools that have programs for them, while the parent might want the child to go to their neighborhood school as the “least restrictive environment.”
For Hearst-Purdy, that means more “inclusion,” or situations in which her son is in classes and other activities with neurotypical peers instead of segregated in a classroom with other special needs students.
“I would love for him to be included,” said Hearst-Purdy. “I would love if he could have gym, art, and lunch with typical peers and eventually see where else we could go with some sort of inclusion. I’ve always been under the impression that’s something the District just doesn’t do.”
In an email response to questions, District officials said their policy is for all families to register at their neighborhood school, where the IEP team “determines the special education service plan and placement. When a student requires a higher level of service that is not offered in the child’s neighborhood school, a specialized program with space is located closest to where the child resides.”
Dealing with uncertainty
Perng said that for parents, “there’s always the uncertainty of whether your child is going to the neighborhood school or not.”
While ultimately agreeing to Bryce’s placement at Morrison, Hearst-Purdy pushed, hired an attorney, and was able to get compensatory education, or a direct payment, for the months Bryce missed in kindergarten so she can obtain therapy and other services to make up for the lost time. She and other special education advocates view this as necessary but also indicative of a fundamental problem, which is, as they see it, that the School District would rather put up a fight, paying attorneys and shelling out compensatory education funds instead of just working more closely with families.
On the one hand, many parents have a “litigious mindset;” on the other, the District is all too ready to gird for a legal battle instead of working to find the best placement, according to some parents and advocates.
For Nicole DelGiorno, she spent time scouting out an appropriate placement for Giovanni, and knew she wanted him at Bregy’s self-contained autistic support kindergarten. While she is not totally happy–she would like it if he had more frequent physical therapy than the District provides–she is generally satisfied with the services her son receives. His kindergarten has 10 students, a teacher and “two or three” aides where “everything is regimented and scheduled.”
Her son has “progressed a lot since September,” she said. “He’s actually doing very well. I’m happy with the education he’s getting at Bregy.”
She describes Giovanni as “extremely smart,” and the teacher often gives him first grade work. “They try to do specifics for each child instead of grouping under one umbrella,” she said.
Still, advocating for him is like a fulltime job. A licensed cosmetologist, at the moment she is a stay-at-home mom, living on disability checks from her late husband, who died last January, and for Giovanni. “I feel I have to devote all my time to this,” she said.
When Giovanni was first diagnosed, “my head was spinning, I didn’t know who to talk to or what to do,” she said. But now, she said, she knows how to “fight for my child. I won’t take no for an answer.”
She understands that people at the District “have a big caseload,” and she acknowledges that “some parents are not easy to deal with.” But she adds: “The people working with parents like us have to understand where we’re coming from,” she said.
She advises parents “to ask a lot of questions. You have to be strong.”