Testimony in Support of An Act to Address the Inequitable Impact of the Pandemic on Black and Latinx Individuals with Autism - H.477 (Rep. Barber), S.1472 (Sen. Lovely)
MAC Legal Intern Rachel Niegelberg presented the below testimony on June 30, 2021 before the Joint Committee on COVID-19 and Emergency Preparedness and Management. Click here for a recording of her testimony (begins at 3:36:30)
My name is Rachel Niegelberg. I’m here to express MAC’s support of H.477, S.1472 - An Act addressing the inequitable impact of the pandemic on Black and Latinx individuals with autism. I am a student at Harvard Law School, working with Julia Landau as a legal intern with Massachusetts Advocates for Children. Prior to attending law school, I worked as a special education teacher in the New York public school system for ten years. I spent many years working with students with autism and their families and gained an understanding of the unique challenges these families face.
The purpose of this bill is to ensure that the Massachusetts Autism Commission addresses the disproportionate impact of COVID-19 on individuals of color with autism in its annual report to the legislature. The legislation directs the Autism Commission to address the impact of the pandemic by investigating data regarding services provided to individuals with autism, separated by racial and ethnic group, primary language, economic status, and gender. The Commission will use the data to provide recommendations on how to improve services and address the inequitable impact of the pandemic and recovery on individuals of color with autism. We have worked closely with the bill’s cosponsors who will be proposing an amendment to this Committee with proposed language to ensure that the Autism Commission also addresses the impact of the pandemic on Asian American and Pacific Islander, Native American, and other individuals of color.
As you know, the rates of COVID-19 infections of Black and Latinx individuals in Massachusetts were three times higher than White residents, and they are less likely to have access to the devices and Internet necessary to utilize vital services. Black and Latinx parents of children with autism faced high rates of job loss, food insecurity, illness of themselves or family members, and other stressors, all while attempting to care for and educate their children at home. With the switch to remote learning and services, many children with autism experienced major disruptions to their routines without the services they need to move through their daily lives. Research and experience have demonstrated that with equitable services and supports individuals with autism have huge potential, and can gain the skills necessary to ultimately live and work in the community as independently as possible. However, since March 2020 MAC has heard from countless families whose children have exhibited increased behavioral challenges, lost vital communication, social skills, and academic skills, and in some cases are now demonstrating dangerous behaviors such as bolting, self-harm, or harm toward others. In addition, MAC worked with many parents with limited English proficiency who faced, in many cases, what became insurmountable barriers as they tried to access services during the pandemic.
Screenshot from MAC Legal Intern Rachel Niegelberg’s testimony before the Joint Committee on COVID-19 and Emergency Preparedness and Management. Senator Jo Comerford, Chairperson, is also on screen. Rachel’s testimony begins at 3:36:30 in this recording.
As the Commonwealth moves forward in implementing recovery efforts, it will be important to address the needs of all individuals with autism impacted by the pandemic. The purpose of this bill is to address widening inequities and focus specifically on the needs of individuals of color from the communities hit hardest by the pandemic. Over the past fifteen months, MAC’s HelpLine has received numerous calls from parents of children and young adults with autism facing barriers directly caused by the pandemic. Many parents are witnessing heartbreaking regression in their children’s academic, social, emotional, and executive functioning skills and many non-English speaking parents have reported troubling language access barriers.
MAC’s Autism Center has provided legal representation for a family whose experience demonstrates the complex needs of people of color with autism in this difficult time. Alex* is a 17-year-old Latinx high school student with significant autism. Alex enjoys playing sports, riding his bike, and being around his peers. In addition to autism, Alex has an intellectual disability which results in significant delays. At the age of 17 he is learning basic sight words and how to add two-digit numbers. Before the pandemic, he was receiving individualized behavioral support with a 1:1 aide, present at all times to address his aggression, seizures, and allergies. He was also receiving speech therapy, behavioral therapy, and counseling. These services were designed to try to help Alex to regulate his behaviors, communicate more effectively, and even work in the school store.
When the pandemic forced schools to shift to remote learning, Alex was unable to access his education. Having access to a Chromebook for his remote learning was not enough to support his needs. Although his mother tried everything she could think of to help him participate, he lacked the skills and support necessary to engage remotely. He became frustrated, and at times, the mere sight of the Chromebook would trigger intense behaviors in Alex, including throwing the computer, biting and scratching, and attacking his mother. It was necessary for both Alex and his mother’s safety to close the computer immediately, thereby preventing Alex from receiving his education.
The responsibility for Alex’s educational needs fell to his mother who made great efforts to help her son, despite the frequent outbursts of aggression she faced. Alex’s mother is a strong advocate for her son, and she repeatedly reached out to the school for assistance, fearing that Alex’s regression would be permanently damaging, and requesting updated plans to help her child. However, Alex’s mother’s primary language is Spanish and the district’s failure to provide necessary interpretation and translation created huge obstacles. The district provided information, instructions, documents, and plans for remote learning solely in English. The school ignored Alex’s mother’s requests to receive schoolwork and directions translated into Spanish, so she was at a huge disadvantage as she tried to work with her son during the many months he has been home. At most, Alex was only able to participate in one to two hours of instruction per week and only with the heavy guidance of his mother. Alex is now vaccinated, but he is still at home without any services. Because of the increase in Alex’s behavioral challenges, he was terminated from his special education program. MAC is working with the family, advocating to address the language access barriers and obtain the program services vital to Alex’s development.
Alex’s story is just one example that represents the need for the Autism Commission’s investigation and recommendations to mitigate the effects of the pandemic on people of color with autism and their families.
We’d also like to emphasize the immediate nature of this bill. As vaccination rates increase and pandemic recovery efforts are underway, the Commission’s recommendations can play a pivotal role in helping determine the best ways to support the communities and community members hardest hit by the pandemic. The data collected and investigated by the Commission will identify the challenges experienced during COVID-19 as well as lead efforts going forward to aid in the recovery of the greatest-impacted communities.
We appreciate the Committee’s consideration of this important and timely bill and urge you to report this bill out favorably. Thank you.
*Name changed for confidentiality