Life-limiting inequities continue to persist in healthcare, community living and justice for people with disabilities.
The Center for Dignity in Healthcare for People with Disabilities (Center for Dignity) focused on the important work of addressing the inequities that persist for people with disabilities in healthcare and their perpetuation due to systemic ableism.
Every person has their own unique and lived experiences. As poet Audre Lorde said, “There is no such thing as a single-issue struggle because we do not live single-issue lives.”
Christina Eguizabal Love, Psy.D. Director of Health and Language Access Office for Health, Equity, Inclusion, and Diversity (O-HEID) Pediatric Neuropsychologist Kennedy Krieger Institute
In the United States, about 1 out of 5 people speak a language other than English at home,1 which equates to nearly 65 million individuals. Those with Limited English Proficiency (LEP) do not speak English as their primary language and have limited ability to read, speak, write, or understand English.2 Providing language access means ensuring that individuals with LEP can communicate effectively to participate in and receive healthcare, an important component of culturally competent services.3 In fact, Title VI of the Civil Rights Act of 1964 and corresponding regulations, including the Affordable Care Act (ACA), indicate that federal agencies and those receiving federal financial assistance are required to provide meaningful access to services for LEP individuals via trained interpreters, translation services, and more.
If you think you broke your arm, would you be surprised to find that the x-ray would only be covered by your insurance if the bone was actually broken? If you needed surgery, would it feel unfair if insurance refused to pay because the surgeon used one brand of equipment instead of another? Would you be frustrated if your broken arm was eligible for physical therapy if you broke it in a car accident, but not if it was the result of a congenital condition?
A recent federal proposal regarding research for a new class of treatment for Alzheimer’s disease has drawn sharp rebuke from an unlikely critic: a coalition of Down syndrome and intellectual disability advocacy organizations. The reason? The Centers for Medicare & Medicaid (CMS) proposal, which is open for public comment until February 9, specifically excludes people with Down syndrome and other intellectual disabilities from participating in the clinical trials. This decision would subsequently prevent them from accessing the treatment (https://www.ndss.org/cms-comment/).
A recent New York Times article, “When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong” by Sarah Kliff, indicates that when cell-free DNA prenatal screening results show that a baby has high chances for some rare genetic conditions, the baby actually does not have the condition 70-90% of the time (a false positive) (2022). Many parents at the other end of the screening results describe the experience as stressful and scary because they weren’t given sufficient information about the accuracy of the tests and the possibility of false positives. Kliff shares that one reason why expectant parents misunderstand the screening tests is because testing labs describe their screening tests as “reliable,” “highly accurate,” etc. in their advertising materials. Moreover, the author asserts that the companies are highly motivated to expand testing so that they can increase profits in a highly lucrative market. Yet, this widening pool of expectant parents who are undergoing testing can leave some parents in the lurch when they don’t receive the counseling and information they need to properly understand the screening tests. Kliff effectively highlights these important issues and presents a strong case for FDA regulation of advertising claims made by testing labs and insurance coverage of independent genetic counseling.
As a result of the COVID-19 public health crisis, children are being forced to shoulder an incomprehensible burden of loss. Many children have experienced health issues due to COVID-19 infections or long COVID-19 symptoms. They have also encountered a loss of innocence and protection, as they shoulder the weight of a parent coping with long COVID-19—or worse, the death of a parent or primary caregiver from COVID-19. This loss disproportionately affects young children and children with developmental disabilities because of the increased reliance on their caregivers.
On December 8, 2021, the U.S. Food and Drug Administration (FDA) issued Emergency Use Authorization (EUA) for Evusheld (formerly AZD7442) for emergency use in the United States for pre-exposure prevention of COVID-19. The EUA approval seems to provide long-awaited hope for adults and children 12 years of age and older who are moderately to severely immunocompromised and may not mount an adequate immune response and for those who have been advised against the available COVID-19 vaccines due to severe allergies with components of the vaccine or a history of adverse reactions. However, over the last month, many people have expressed frustration and disappointment with the lack of access to Evusheld and transparency about the distribution process.
Following the lockdown restrictions, telehealth services saw an unprecedented boom nationwide. Within the first few months of 2020 alone, patient adoption saw a 33% jump. This has led experts to predict the telehealth market value to be worth a staggering $185 billion by 2026. And this is no doubt, boosted by the level of convenience and safety that the service provides.
However, while this bodes well for the able-bodied, it is quite the opposite for those with disabilities. In fact, rather than equally empowering those with physical and developmental disabilities, telehealth largely accentuates the gaps in healthcare inclusivity.
The 2021–2022 school year started much differently than the previous school year. While many schools only offered a virtual option for students last year, this year, most students across the country are attending school in person. In the nearly two years since COVID-19 emerged in the United States, many Americans have worn face masks and have been vaccinated to prevent catching the coronavirus. Although there has been progress, the number of COVID-19 cases has remained high. According to the American Academy of Pediatrics, as of October 7, 2021, more than 6 million children have tested positive for the coronavirus since the onset of the pandemic. From September 30, 2021, to October 7, 2021, 148,222 children tested positive for virus, representing 24.8% of the weekly reported COVID-19 cases.
The National Center for Disability, Equity, and Intersectionality is funded by the Administration for Community Living through funding opportunity number 90NCDE0001-01-00. This website formerly included the work of the Center for Dignity in Healthcare for People with Disabilities.