As reported in Part One and Part Two of this series, the many barriers to healthcare for women with disabilities have been entrenched in our society. Breaking down those barriers has been a slow process:

In 2005, The United States Surgeon General issued a Call to Action to Improve the Health and Wellness of Persons with Disabilities.
In 2013, the U.S. Department of Justice Civil Rights Division and U.S. Attorneys Offices across the nation launched the Barrier-Free Health Care Initiative, which focused enforcement efforts on access to medical services and facilities for Americans with disabilities.
In 2017, The Journal of Global Health, Epidemiology and Genomics issued a call to action for gender equality in global health leadership.

This year, the calls to action have finally borne fruit:

In May, 2024, the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) finalized a new rule under Section 504 of the Rehabilitation Act that prohibits discrimination on the basis of disability in programs and activities that receive funding from HHS. In part, the new rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, accomplishes the following:

Clarifies service provider obligations to offer services in the most integrated setting appropriate.

Adopts U.S. Access Board standards for accessible medical diagnostic equipment, including exam tables and mammography machines.
Defines access to websites and mobile applications and requires web-enabled self-service kiosks.
Addresses discrimination in medical treatment, specifically that which results from bias about the value of disabled lives.
Prohibits value assessments (such as Quality Adjusted Life Years (QALYs) that discount the value of a life extension on the basis of disability.

“By removing barriers to health care and social services, this rule advances justice for people with disabilities who have for too long been subject to discrimination,” HHS OCR Director Melanie Fontes Rainer says in a press release. “No diagnosis should be missed because of an inaccessible mammogram, no patient should be left with questions about test results due to inaccessible websites, and no life should be valued less due to disability.”

Also this year, the World Economic Forum initiated The Global Alliance for Women’s Health, which promises to “put women’s health on the global agenda, unlock more investments for women’s health, and advance women’s health research and innovation.” The U.S. Justice Department also proposed a new rule under Title II of the Americans with Disabilities Act (ADA) that would improve access to medical diagnostic equipment for people with disabilities.

More Work Ahead

Though the recent steps are substantive, advocacy groups agree that other solutions must be implemented to improve access to healthcare for women with disabilities They include:

Deliver better access to care, especially preventative care and durable medical goods. Women with disabilities are less likely to receive preventive health screening, such as breast and cervical cancer screening.The Center for Disease Control outlines several actions needed to make community health services more inclusive:

Changes to communication and technology, including accessible formats and disability representation in promotional materials

Changes to customer service, including disability awareness training

Changes to remove environmental barriers.

Among adults with disabilities surveyed in The 2022 Urban Institute’s Health Reform Monitoring Survey , 15 percent reported that they or someone in their household delayed getting or did not get the medical equipment or supplies they needed, mostly due to limitations with health insurance coverage. The Urban Institute suggests the barriers to accessing medical equipment be addressed with insurance reforms, and by:

Raising awareness of supply chain vulnerabilities that prioritize hospital use, leaving disabled people without medical supplies.
Enhancing accessibility at medical facilities.
Increasing the availability of (accessible) transportation.

It is also important to educate more medical students with disabilities and employ more people with disabilities in healthcare and the biomedical workforce. As noted in “Why Disability Must Be Included in Medical School Diversification Efforts”[CB1] in The American Medical Association (AMA) Journal of Ethics,^® “Explicitly including disability as a valued part of diversity would help dispel ableism, limit inaccurate assumptions, and better promote beneficence, nonmaleficence, and justice in health care.”

Organizations like Docs with Disabilities and the National Deaf Center on Postsecondary Outcomes also actively encourage disabled students to attend medical school, and the number of disabled students accepted is increasing. As reported by Johns Hopkins Medicine, the percentage of applicants with disabilities admitted to US medical schools increased to 4.9% in 2019 from 2.9% in 2016. Yet the 2020 Association of American Medical Colleges’ Graduation Questionnaire found that the percentage of medical students reporting a disability increased from 4.6 to 7.6% when they could remain anonymous, suggesting that many still fear discrimination.

In the hopes of arming more women with disabilities with information that can help then access the healthcare that is their civil right, Women’s eNews has curated a list of helpful healthcare resources:

5 “G’s” Getting Access to Health Care for People with Physical Disabilities from Corada.

Guide for Effective Communication in Health Care from the Hearing Loss Association of America (includes guides for patients and providers)

Access to Medical Care for Individuals with Mobility Disabilities from the U.S. Department of Justice.

Blind and Low Vision Persons’ Right to Health Care Information in Alternative Formats from NOLO.

Of additional note is the Taking Charge of My Health Care Toolkit, an online resource for people with intellectual/developmental disabilities and those who support them, from the Oregon Self-Advocacy Coalition, the Oregon Office on Disability and Health, and the University Center of Excellence in Developmental Disabilities.:

Advocate for change

Advocacy comes in many forms. Terri Guy, who has multiple disabilities, including hearing loss, and helped ensure 911 texting in Maricopa County, and Kaylan Dunlap, who teaches healthcare sessions for the National ADA Symposium and the Accessibility Professionals Association, were asked what they wish physicians knew most about women with disabilities. Here are their responses:

“I wish doctors were taught about disability in medical school: what that means to disabled people and their everyday lives; that they can and will have productive lives, people that love them, things they want to do, places they want to go; what it means when they don’t see the full picture of the person in front of them,” says Kaylan Dunlap. “I wish doctors would talk to us, listen to what we have to say, have a conversation with us instead of telling us that we aren’t worthy of care because of our disability.”

“I’m a person,” says Terri Guy, “I have feelings just like everybody else. And my disability does not define me.”

About The Author: Cindy Brown Is A Fellow With The Loreen Arbus Accessibility Is Fundamental Program, A Fellowship Created With Women’s ENews To Train Women With Disabilities As Professional Journalists So That They May Write, Research And Report On The Most Crucial Issues Impacting The Disabilities Community.