NYC Council Oversight Hearing on FY23 Preliminary Budget

We would like to thank the New York City Council’s Committees on Mental Health, Disabilities, and Addiction, and the Committee on Health for jointly holding this important oversight hearing on the City’s FY2023 Preliminary Budget.  My name is Lori Podvesker, and I am the Director of Policy at INCLUDEnyc. For the last near 40 years, INCLUDEnyc (formerly Resources for Children with Special Needs) has helped hundreds of thousands of NYC families navigate the complex special education service and support systems.

While we commend the City for its response to the public health, economic, humanitarian, and mental health crisis during the last two years, we also testify today to urge the Council to maintain funding for the Autism Awareness Initiative. Many families with children on the autism spectrum were in high need prior to the pandemic and have long struggled to obtain the supports and services their children need to make educational progress and live at home. The pandemic has unfortunately worsened the already existing barriers that families and young people with autism face each day, and they need help now more than ever. Without this funding, families would not be able to access evaluations, services, support, or community, for their loved ones or themselves.  

While the lives of all New York City families and young people were fundamentally disrupted during COVID-19, children on the autism spectrum and their families were among the most affected by these disruptions. Yet as we begin to move towards the restoration of pre-pandemic daily living and activities, our families and young people with autism unjustly continue to be among the most in need and underserved. Changes in routines, schedules, and environment, coupled with the loss of in-person evaluations, services, instruction, socialization, and support at home, triggered extraordinary challenges for these families caring for their children full-time at home. 

Many families and young people with autism are still in the daily throws of dealing with the negative implications of COVID, including academic and behavioral regression, communication, learning abilities, isolation, and emotional well being. However, it has become even further compounded due to severe shortages with direct support service providers at home, qualified special education teachers and bilingual special education evaluators, therapists, and programs, home and school behavioral supports and licensed professionals, and continued lack of in-person supports and activities.

In addition, families need help with understanding how to apply for community based waiver services for their family members from the New York State Office for People with Developmental Disabilities. This process is arduous, complex, and cumbersome. It is even more harrowing if you don’t speak English, have access to technology, or have the ability to communicate during traditional Monday – Friday working hours. Every day we hear from families that the application process takes months and even years, and therefore, it takes even longer for supports to begin. 

There are tens of thousands of children on the autism spectrum living in New York City under the age of 21. According to the New York City Department of Education’s November 2021 Special Education Report to the Council as per Local Law 27, over 24,000 students ages 5-21 are classified with autism. There are thousands more under the age of 5 who are diagnosed with autism, and many more who are waiting to be evaluated and diagnosed or classified with autism. 

As per the most recent data provided to the Council from the NYCDOE (February 2022 School-age Special Education Report as per Local Law 27), more than 5,000 children with autism in self-contained classes, in which the majority of students classified with autism are programmatically recommended for, are not receiving any or all their mandated services. And more than 4,000 school-age English Language Learners students are classified with autism. 

Within the last year, we had a 30% increase in the number of calls we received from families with a loved one on the autism spectrum looking for information and help from us. We presented over 50 autism-focused workshops with more than 2,400 parent, youth, and professional attendees. Our annual events, Indoors for Autism and our INCLUDEnyc Fair, were held remotely and engaged over 1300 attendees.

Through our work, we are able to help families with children with autism:

• Problem solve to access emergency supports for their child and themselves
• Better manage their child’s behavior at home
• Connect to mental health resources
• Reduce social isolation
• Understand citywide and school based information  
• Advocate for their child’s educational rights
• Apply for home and community based services through NY State’s Office for People with Developmental Disabilities
• Access child care and some form of respite

As our City continues to cautiously move forward and resume pre-pandemic activities and daily living, many young people with autism and their families cannot as the result of still not receiving the required supports and services needed for their safety, health, education, and community integration. We sadly know from experience that this coming fiscal year will be just as intense and challenging for young autistic New Yorkers. We also know from our everyday experiences and interaction with their families, that many parents and caregivers of young children on the autism spectrum are at the end of their ropes. 

We urge you to fully restore the Autism Awareness Initiative at $3.2 million. Without this funding there are no other public service systems where families can get this kind of support. Thank you for taking the time today to consider this important matter. We look forward to partnering with you to improve equity and access for all young people with disabilities in New York City. 

Sincerely,

Lori Podvesker

Director of Disability and Education Policy