New regulation strengthens civil rights protections

Decades of advocacy has made America more inclusive and accessible, but far too many barriers still exist for people with disabilities to exercise their civil rights.  The Office of Civil Rights (OCR) within the U.S. Department of Health and Human Services (HHS) has reviewed, amended and issued new federal rules (aka regulation) for Sections 1557 and 504 that strengthen civil rights and anti-discrimination protections.  

The new rules are particularly beneficial for people with disabilities and will improve access to quality health services that autistic individuals rely upon throughout their lives. Autism Speaks was grateful to see that many of the changes we supported were included in the final rules. 

What are Sections 504 and 1557?

Sections 504 and 1557 refer to two key non-discrimination provisions in existing law. The new rules build upon each other as they strengthen implementation of these laws:

1. Second 504 of the Rehabilitation Act prohibits discrimination on the basis of disability by any recipient of federal funding. OCR's Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance rule is the first major update to this section of regulation since it was first issued in 1977. It requires all recipients of HHS funding to adhere to disability nondiscrimination requirements. 
2. Section 1557 of the Patient Protection and Affordable Care Act (ACA) prohibits discrimination on the basis of race, color, national origin, age, disability, or sex (including pregnancy, sexual orientation, gender identity, and sex characteristics) in covered health programs or activities. OCR’s Nondiscrimination in Health Programs and Activities final rule strengthens nondiscrimination protections in healthcare by further defining to whom certain nondiscrimination requirements apply. 

What is the impact of new regulation?

While the new federal rules broadly impact all Americans, they benefit autistic people in three significant areas:

1. Nondiscrimination within healthcare
2. Language, Physical and Digital Accessibility
3. Protecting LGBTQIA+ Patients          

Nondiscrimination within healthcare

New rules for Sections 1557 and 504 better protect patients with disabilities from discrimination in receiving healthcare services. They require that HHS health programs and activities are held to the same nondiscrimination standards as recipients of federal financial assistance. This means that it is unlawful for health care providers to refuse to treat or otherwise discriminate against an individual on the basis on their race, color, national origin, sex, age, or disability.

The rule clarifies that nondiscrimination in health programs and activities applies to:

• both in-person and telehealth care;
• healthcare providers and suppliers receiving Medicare Part B payments;
• patient care decision support tools in clinical care (including the use of AI, clinical algorithms, predictive analytics, and other tools);
• health issuers that receive federal financial assistance and the health insurance marketplaces. 

Not only do the updated rules cover additional programs and services, but they also recognize the growing importance of telehealth and patient care decision support tools—including artificial intelligence and machine learning—and applies nondiscrimination protections to the use of these technologies.

Significance for people with autism:

Children with ASD have nearly 4x higher odds of having unmet health care needs compared to children without disabilities. Abolishing discriminatory practices in health practice is a fundamental necessity to addressing access, affordability and quality of care concerns that influence autistic people’s health outcomes. By better protecting patients from discriminatory health insurance benefit designs made by insurers, the new rule also reinforces other federal laws, like the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA), that ensure autistic individuals have a right to coverage for medically necessary care.

Language, physical and digital accessibility 

The new Section 1557 rule also requires covered health care providers, insurers, grantees, and others to proactively let people know that language assistance and accessibility services are available at no cost to patients. In implementation, this rule:

• requires language assistance services to be accurate and timely and protect the privacy and independence of the individual with limited English proficiency;
• reinforces elements of the Americans with Disabilities Act for in-person care;
• draws attention to the accessibility of digital information and communication technology. For example, it clarifies that covered health programs and activities offered via telehealth must also be accessible to individuals with limited English proficiency and individuals with disabilities.

Significance for people with autism:

Significant health disparities exist between autistic individuals of different geographic, ethnic and racial backgrounds. The rule’s language assistance requirement will improve meaningful access to services for individuals where English may not be a first language. This is particularly impactful for immigrant communities where autistic individuals are consistently underserved. Moreover, the greater attention to physical and digital accessibility of services through telehealth services will improve care for those in less resourced areas where telehealth is increasingly important.

Protecting LGBTQIA+ patients                     

The new rule reinstates Section 1557’s explicit ban on discrimination based on gender identity and sexual orientation by all HHS-administered health programs and activities as well as health insurance issuers that receive federal financial assistance. This restores protections that exist in other federal regulations and had existed when the ACA was originally passed but had been revoked in the years following. 

Significance for people with autism:

People on the autism spectrum more likely to identify as LGBT+ than the general population, and these individuals are more likely to face discrimination in access to care. This can result in not only increased mental health challenges but in poorer health outcomes for autistic LGBT+ individuals, as they may not seek health services as frequently or receive poorer care when they do. A 2020 study found that in addition to reporting twice as many poor physical health days, more than twice the number of LGBTQ+ autistic respondents to the study survey reported having a mental health condition. 

Despite the greater need for mental and physical healthcare services, LGBTQ+ autistic adults have a higher rate of those needs being unmet. More than 35 percent said they were refused services by a medical provider, in addition to being more likely to have their insurance not accepted by a healthcare provider. The change in regulation is a crucial step to adding support and removing barriers to appropriate care for LGBT+ autistic individuals.