May 17, 2024 update:
On May 1, 2024, the U.S. Department of Health & Human Services (HHS) finalized the first updates to 504 regulations in over 40 years, strengthening protections against disability discrimination by health care providers that receive federal funding. The National Partnership applauds HHS for finalizing these critical rules, which will protect the health, safety, and economic security of disabled women, particularly disabled women of color.
Originally published April 8, 2024:
Women are more likely than men to have a disability. The United States has more than 1 million women with chronic physical disabilities who are of child-bearing age, and at least 4.1 million people are disabled parents. Indigenous and Black adults are also more likely to have a disability, as well as members of the LGBTQI+ community. As the number of disabled people in the United States increases, it is even more important to strengthen disability protections.
For the first time in more than 40 years, the U.S. Department of Health and Human Services (HHS) has an opportunity to make policy changes that would impact disabled people across the country, thanks to recently proposed disability anti-discrimination regulations under Section 504. These proposed regulations would increase protections and update severely outdated rules. They would have a significant impact on access to reproductive health care, parental rights, child care, employment rights, educational rights and would deter discrimination against disabled women, disabled women of color and multi-marginalized disabled people in medical treatment.
Section 504 is part of the Rehabilitation Act of 1973 that prohibits federal agencies and recipients of federal funds from discriminating on the basis of disability. HHS regulations establish and clarify requirements for organizations, health care providers and other entities that receive HHS funds. These updated regulations will have numerous positive impacts on the economic, physical, mental and emotional health of disabled people, particularly disabled women of color, by requiring that employers and organizations:
- keep up with current mobile, web and kiosk technologies;
- establish requirements for accessible medical equipment;
- prohibit value assessments that discriminate against disabled people in making medical decisions;
- clarify requirements for child welfare programs; and
- expand and guarantee access to health care, including reproductive health care and preventative care, for disabled women and gender expansive people.
Disabled people – particularly disabled women and disabled women of color – face regular attacks on their bodily autonomy, reproductive freedom and decisions to parent. These attacks are based in a deep history of eugenics and paternalism that has robbed disabled people of their dignity. As a result, disabled people are often deprived of the right to make decisions about their own health care choices, including reproductive and sexual health care.
Access to Medical Diagnostic Equipment
HHS’ proposed requirements for medical diagnostic equipment will help disabled people, including disabled women and disabled women of color, access critical health care and preventive care, such as mammograms and Pap smears. A 2017 study using 2013 National Health Interview Survey data showed that disabled women were much less likely to receive Pap smears compared with nondisabled women. Disabled women were also much less likely to have a mammogram when compared with nondisabled women. Further, disabled people are more likely to be diagnosed with breast cancer at later stages and have higher breast cancer mortality rates compared with their nondisabled peers. These concerns are compounded for disabled women of color and LGBTQI+ disabled people.
Inaccessible scales may also impact prenatal care. Physicians have reported sending patients in wheelchairs to supermarkets, grain elevators, zoos or cattle processing plants to obtain their weight. Not only is this dehumanizing but it also delays necessary care. These rules would clarify that this is unacceptable under the law.
Access to Reproductive, Sexual and Maternal Health Care
Providers routinely assume disabled people do not have reproductive and sexual health care needs. These attitudes may result in denial of access to contraceptives, coerced sterilization and more. These regulations would confirm these attitudes have no place in health care – disabled people should be provided with all possible options for addressing their health care questions and concerns, just as nondisabled people.
Disabled pregnant people also need and deserve adequate maternal health care. Disabled women have a higher risk of severe maternal morbidities including preeclampsia/eclampsia, hemorrhage and infection. Compared to women without disabilities, disabled women are at 11 times greater risk for maternal mortality. Even though disabled women are as likely as nondisabled women to desire becoming a parent, there is a lack of competent, accessible and affordable care for disabled pregnant people – in part, due to biases, stigma, lack of training and a lack of disabled doctors with lived experience. These regulations would ensure that doctors cannot make medical decisions or recommendations based on biases. They would also help to expand the number of disabled doctors by addressing discrimination in employment and educational settings.
Strengthening the Right to Parent for Disabled People
In a further attack on disabled people’s right to parent, they are referred to child welfare at higher rates, and once referred, the parental rights of parents with disabilities are disproportionately terminated. This issue is even more pronounced for children of color, and Black and Indigenous children in particular, who are less likely to reunify with their parents and more likely to have longer out-of-home placements. States play a critical role in parental rights determinations, but many child welfare programs receive federal funding from HHS. About 35 states include disability as grounds for termination of parental rights. In every state, a family court can consider the disability of the parent in making a determination about the best interest of the child, such as in a removal, custody, or placement hearing. Several states allow the termination of parental rights based on physical disability alone without any evidence of abuse or neglect. These regulations would address this discrimination to ensure stereotypes and generalizations are not used in making determinations about parental rights.
Economic Impacts
These proposed regulations would also have a significant impact on the economic health of disabled women, particularly disabled women of color. Inadequate medical care does not only negatively impact health outcomes and drive avoidable deaths, but there are economic harms as well. Failure to provide all appropriate and recommended clinical and preventive services has a significant economic impact on disabled women, particularly disabled women of color. When health concerns are not addressed early, there are often additional costs to disabled people for avoidable complications and chronic condition management later. Poor health is also associated with increased job loss and unemployment, further impacting the economic health of disabled people.
Additionally, meaningful access to comprehensive and quality sexual, reproductive, and maternity care is essential for economic security. Pregnancy complications, a lack of paid family and medical leave, decreased workforce participation and other concerns can impact the economic security of disabled people. With access to quality, affordable and culturally and linguistically congruent care, economic opportunities for disabled women expand.
Conclusion
These examples are only a fraction of the impact these regulations would have on the health, safety and economic security of disabled women, particularly disabled women of color. Comments on HHS’ proposed rule were due in November 2023. Right now, we are waiting for HHS and all federal agencies involved in the process to work toward finalizing this rule. We call on HHS and all agencies involved in the process to quickly finalize these much-needed, life-saving regulations.
