Parenting typical children is hard. Parenting children with special needs is harder. (I get to say this; I’ve got three of the former and one of the latter.) For our youngest son with multiple disabilities that range from moderate to severe, we have committed ourselves to finding the best educational placements for him.

But what is “best”?

What we’ve learned over the last two decades is that what’s best changes with his needs. During his younger years he was best served by a segregated placement in a private special education school with tuition paid by our district (a common arrangement in New Jersey). As he matured, he was best served by an inclusive placement in-district. But true inclusion for our son was inconsistent, even with the best intentions of child study team members, teachers, administrators, and, yes, parents.

Example: In his first year of high school he was fully included, with occasional help from an aide, in the marching band. (Our boy has mad rhythm.) In his third year, under a new band director, he was  relegated to the band’s section of the bleachers, beating away on his drum, and excluded from the football field.

General education is hard. Special education is harder.

Faced with the mountains of data that support the use of inclusion models for maximizing the potential of special needs kids (with benefits for typical children as well), there should be little debate regarding a district’s priorities.

Yet there is. 

A new report called “An Advocate’s Guide to Transforming Special Education” by the nonprofit group Innovate Public Schools (IPS)  argues that the time for debate is past. 

According to IPS, which describes its mission as “working to make sure that all students — especially those who have been left behind for too long, including low-income students, students of color and students with disabilities — receive a world-class public education,”

Research shows that when students with disabilities are included in general education classrooms for the majority of the school day, they are more likely to meet grade-level standards than students with similar disabilities who are assigned to separate classrooms. In 2001, the Okaloosa County School District in Florida pushed to include more students in general education programs. By 2014, the number of students with disabilities who passed Florida’s state achievement tests increased from 41% to 69% in reading. It increased from 47% to 78% in math.

Yet students with disabilities are segregated into classrooms with low expectations, “regardless of how moderate their disability may be.” Families and advocates are often “dismissed and ignored.” Special needs children, especially those of color, are systematically relegated to lower tracks, regardless of cognitive potential, all in violation of the basic tenet of federal law that children classified as eligible for special education be placed in the “least restrictive environment.”

The report highlights several districts in California, both traditional and charter, that have successfully implemented tiered systems of intervention — escalating levels of support — that allow students to “exit out” of segregated settings with relative ease. The system uses a series of steps that include changing teachers’ expectations, emphasizing accountability, providing all necessary supports, addressing implicit bias, including students far more frequently in classrooms with typically-developing students, and using special education modifications that benefit everyone. students with and without disabilities, through an approach called “Universal Design for Learning.”

Why are students with disabilities so often stuck in classrooms with low ceilings of expectations, despite the fact that experts estimate that “80% of students with disabilities can achieve at grade level when given the right support” yet fewer than 15 percent do? Why are our children so often left behind in the bleachers?

Let’s start with this: the vast majority of children classified as special ed have mild to moderate disabilities. While 6.4 percent have intellectual disabilities and 8.8 percent have autism (an umbrella term that encompasses a wide gamut from children with easily managed disabilities to those who need one-on-one attention), most classified students have specific learning disabilities like dyslexia or processing disorders. They’re smart. They’re capable. And they’re often relegated to isolated settings that undermine their academic and social potential.

The IPS report places the responsibility for underperformance of special needs students on several factors, especially low expectations by teachers and other staff members: “Once a student is identified as having a disability,” the researchers write, “educators often have a fixed perception about what that student needs. Some believe that a diagnosis of a disability inherently means the student will always struggle in the same way. These perceptions can end up trapping students in certain interventions or settings for far too long.” Other factors include lack of accountability, a lack of respect for neurodiversity,  racial bias (“a White student and a Black student struggling in the same ways are often treated very differently”), and, most importantly, a “fixed mindset” versus a “growth mindset.”

Inclusion is not always the answer, particularly for students with severe disabilities. But all too often that “fixed mindset” traps capable students in segregated classrooms for no other reason than they had been placed there years ago by a Child Study Team.

I have a New Jersey blog and yesterday I wrote about the IPS report and its relevance to N.J. where our lack of inclusion is stunning — only 46 percent of children with disabilities, the second lowest is the country, are in inclusive settings (typically defined as spending 80 percent of the school day with typical peers)– but children usually receive mandated services itemized in their Individualized Education Plans (IEP’s).  (For a national and state-by-state perspective, read this excellent 2018 publication by the National Council on Disability.)

In contrast,  New York has a better rate of inclusion than NJ — 58 percent of the state’s special needs children are in inclusive settings for 80 percent or more of the school day — but that’s nothing to write home about because it’s still the 14th lowest in the country. (Vermont is the best in this category and Utah is the worst.)

For specific examples of NY’s failure to provide adequate inclusive settings  see Alina’s discussion (on this blog) with several parents of physically-handicapped children who are neuro-typical and, in at least one case, gifted. The NYC DOE issues a list of schools that are supposed to be handicapped-accessible. Here’s what one parent told Alina:

Our zoned school was not accessible. We did not apply to G&T’s because they were not accessible either. One school outside our zone was listed as accessible by the DOE, but when we toured, their elevator was at one end of school’s long building, and it was often out of service.  At another school, we didn’t see any children with physical disabilities included in the general education classrooms. Instead they were enrolled in the school’s self-contained, special education classes. Inclusion was an important factor for us. We wanted our child to feel just as much a part of a school as any other. We worried any physical issues with the school could only make them more separated from their classmates.

However, the chief problem in New York City’s special education system is not the rate of inclusion but the egregious practice of denying mandated services to children.

This lack of access to services is often attributed to problems with the City’s computer-based Special Education Student Information System.

This excuse and a metrocard will get special needs families a ride on the subway.

A report last Fall by Public Advocate Letitia James found that, especially for families in the Bronx, “the DOE has shifted its  responsibility to parents – holding them accountable for finding providers for related services that are indicated on their child’s IEP, coordinating care and services.”  Parents are given a list of providers for services like speech, occupational, and physical therapy and then told they will receive vouchers to pay the therapists.

From the report:

The Public Advocate’s Office called a random sample of 50 speech therapists and 50 occupational therapists listed as providing services in the Bronx. None of these providers were willing to travel to the Bronx to provide services.

In fact, last year 48,000 students classified as eligible for special education only partially received their services last year, or did not get them at all. In response, the organization Disability Rights Advocates filed a class action lawsuit against the DOE and former Commissioner Carmen Fariña.

For a case study of NYC’s voucher fiasco see my three-part series on Wesley Clark, a charming nine-year old with Down Syndrome who was kicked out of his zoned Brooklyn Heights school because his parents wanted him included with typical peers. The DOE has yet to issue appropriate vouchers. (His parents, by the way, are both lawyers, thoroughly informed about Wesley’s rights. Imagine the difficulties for less-informed parents with fewer resources at their disposal.)

NYC has a new Chancellor who seems sincerely devoted to disenfranchised youngsters. Perhaps he should look at the circumstances of children like Wesley, who get cheated every day by a dysfunctional system that deprives students with disabilities of their state and federal rights. It’s time to beat that drum.