Students with special needs suffering most

I understand the angst, the confusion, the passion on all sides as we start of the 202021 school year. Yet, as I listen to NPR stories, read front page articles in the newspapers and am apprised on local school districts’ developments, I also hear the anguish.

As a developmental and behavioral pediatrician who works primarily with students with special needs, such as autism, global developmental delays, ADHD and a myriad other conditions that affect a child’s ability to learn and interact with others, I fret because I know it is these most vulnerable children that are suffering the most.

There are tremendous challenges with the technology of virtual learning from home in many cases, and that issue is being addressed, albeit too slowly. There are children, however, who simply cannot learn that way.

There are children who because of their complex medical needs cannot attend to a screen for more than a few minutes, who cannot access speech and language services, physical therapy or critical behavioral services such as applied behavioral analysis for autism.

These children are left in a vacuum; they are home, some being watched by siblings as their parents work, some being raised by elderly grandparents who are less savvy in technology, in an environment that is unable to offer the structure necessary to enable these children to learn.

We know that these students are regressing — and that is true for a 3-yearold in the early intervention preschool program right through 21-year-old young adults in transition academies across the state who are missing critical job training and social services.

In pediatrics, we speak about a “critical window” of neurological development, and these medically complex children are more vulnerable to missed instruction, a lack of behavioral regulation paradigms, speech and language services as well as many other ancillary services required to address their needs and improve their functioning.

It has been shown many times over that early intervention more than pays for itself. For every dollar invested in services for these vulnerable children, the net gain is measurable and significant in dollars returned to society.

These services are expensive, but they can change a life from one of dependence to one of self-realization enable these individuals to be engaged contributors to society. By depriving this community of in-person services, many of these children have become more emotionally dysregulated.

IN my field, as well as in the related fields of child psychiatry and behavioral health, there has been a tremendous increase in the need for support as the structure and services from most schools have ceased or have been sharply reduced, and for these children there is a significant and measurable regression of developmentally appropriate skills. Children are in crisis and families, therefore, are in crisis.

In Connecticut, the state Department of Education tried to include guidelines to provide more structure for these high-needs children in Addendum 3 to their policy statement released July 28. But in districts like New Haven, where no services will be offered faceto-face for the next several months, it is a moot point.

The federal laws that protect the rights of these children such as the IDEA (Individuals with Disabilities Education Act) and the ADA (Americans with Disabilities Act) are suspended during the state of emergency and become impotent when faced with local districts’ highly individualistic and what appears at times to be capricious delineation of actual services offered.

Aware of the heterogeneity of district’s responses, the Department of Education notes: “If a school district is unable to implement the student’s IEP, districts (can) turn to the local Regional Educational Service Centers or Approved Private Special Education Programs to meet the needs of this student population.” But, as this is time consuming and expensive, this has not occurred.

Exacerbating the problem, for many of these families, is that in-home services have also been suspended if a child is not able to socially distance from a provider.

So, for example, many of our autistic patients no longer get their home ABA programming to help regulate their behaviors, keep them safe and make life manageable for families.

Many of our patients with emotional disturbances of all kinds are not able to get their home-based psychiatric supports through programs like IICAPS, Intensive In Home Child & Adolescent Psychiatric Services, and these families are all at high risk of harm.

Once again, as so often, it is the most vulnerable in our society who get disenfranchised and left behind; and, for this population, it may have long-lasting negative effects on the trajectory of their lives.

If these supports are not reinstated for these children and families there will be dire consequences for individuals, families, and ultimately society at large.