On February 22, 2022, CommunicationFIRST was invited to provide comments at a stakeholder listening session sponsored by the Office for Civil Rights (OCR) at the US Department of Health and Human Services (HHS). The listening session addressed OCR’s plan to revise its regulations under Section 504 of the Rehabilitation Act of 1973 to address discrimination on the basis of disability in HHS-funded health and human services programs and in HHS’s own programs and activities. The following is a slightly edited version of comments made by CommunicationFIRST’s Policy Director, Bob Williams, during the listening session.
Good afternoon. My name is Bob Williams, and I am the Policy Director of CommunicationFIRST. We are very pleased to have this opportunity to comment on what we view as the urgent opportunity and obligation to strengthen and bring HHS’s Section 504 regulations into the 21st century.
I was just about to graduate from high school when HHS finally announced that it would publish its first set of 504 regulations in May 1977, after months-long demonstrations by disabled protesters and our allies across the country [NB: These demonstrations included the famous 504 Sit-In, led in part by CommunicationFIRST Board member Judy Heumann and others]. Before that day, my life prospects were nil to none. It is a vast understatement to say that the publication of those rules transformed my life, and the life opportunities of millions of other people with disabilities, especially those like me who were part of what I proudly call the 504 generation, in ways that are still unfathomable to many.
Nearly half a century later, we collectively have the same opportunity – and the same obligation – to revise the current rules in ways that recognize and forcefully attack the bias and inequities of our day, to bring about greater justice for generations to come. We believe the kind of changes that must be made in the regulations that I will be outlining shortly are absolutely vital for saving lives, improving health and well-being, avoiding unjustified institutionalization and social isolation, and increasing integration and inclusion – all of which will require HHS OCR to clearly delineate as well as enforce the effective communication rights of those we represent.
So, before outlining our specific concerns, I want to provide you a bit of background on CommunicationFIRST, our constituency, and the work we do. We are the only national civil rights organization led by and dedicated to protecting and advancing the rights of the estimated 5 million people in this country who cannot rely on speech alone to be heard and understood. Those of us who belong to this cohort must rely on a range of methods, collectively known as augmentative and alternative communication, or AAC, for short. AAC includes strategies and technologies that range from gesturing, pointing to letters on cardboard, texting, using a speech generating device, and many other methods. Many of us use multiple methods. We are also a diverse lot in terms of race, disability, age of onset, primary language, where we live, and other socioeconomic factors.
This said, however, research is increasingly indicating that Black, Indigenous, People of Color, and non-English speakers are more likely to acquire disabilities and conditions that might require them to use AAC, and face greater bias, discrimination, and disparities, accessing AAC when they need it.
The chief causes of the pervasive discrimination and dehumanization many and we believe probably most people who require AAC endure are blatant and implicit biases, unwarranted assumptions, and stereotypes. These biases, assumptions, and stereotypes are often rooted in and spurred on by medical, health care, and human services programs, priorities, and practices that HHS is responsible for creating, leading, stewarding, and regulating. HHS can and must seize on this rulemaking process to own, elevate, and bring new tools and approaches to bear on identifying and eliminating such unlawful and frequently egregious discrimination.
To this day, many who require AAC endure the most egregious forms of bias and discrimination: unjustified isolation, institutionalization, illiteracy, illness, ostracism, abuse, violence, and social death. We must end this together. We strongly urge HHS to consider and act on the following:
Number 1. HHS guidance on the effective communication rights of people with hearing and vision disabilities has justifiably evolved consistent with changes in insight and technology. We certainly applaud OCR for making clear in 2020 that people with significant communication disabilities have the right to in-person support to express themselves and be understood by medical professionals when hospitalized during the pandemic. Despite this critical exception, however, few if any changes have occurred over the years in respect to OCR guidance, technical assistance, and enforcement activities on the effective communication rights of those that need AAC. In 2014, the Departments of Education and Justice issued joint guidance on the effective communication rights of students with a wide range of communication disabilities. We urge OCR to use that guidance as a model to issue comprehensive guidance on communication rights in health care settings for people with speech-related disabilities.
Number 2. Since the first Section 504 regulations were issued in the 1970s, effective communication has been largely viewed by entities as being about the provision of auxiliary aids and services. Access to such aids and services is vital. But being afforded all the aides and services in the world does not address the problem. Specifically, it will not stop doctors and others from making snap and irrevocable decisions that we have little intelligence, that we are incapable as well as unworthy of being able to communicate, and deciding to treat us to simply let us die. We appreciate your recent work but process requirements are easily ignored.
Thank you.