The National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) has awarded the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD) at Cincinnati Children’s Hospital Medical Center (CCHMC) a Field Initiative (FI) Project Grant to study the impacts of internalized, interpersonal, and systemic ableism in healthcare services and systems.
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.
The Center for Dignity in Healthcare for People with Disabilities is deeply concerned about the overturning of Roe v Wade and what it means for the control people with disabilities have over their reproductive health. As an organization that is dedicated to addressing healthcare inequities faced by people with disabilities, we know that a more reproductively just system would reduce healthcare inequities among this population.
The Center for Dignity in Healthcare for People with Disabilities (CDHPD) submits the following comments to Communications Equality Advocates Petition for Reconsideration. CDHPD aims to reduce healthcare inequities faced by people with disabilities and is composed of partners from multiple University Centers for Excellence in Developmental Disabilities (UCEDD), medical and advocacy organizations. One of our four focus areas includes reducing healthcare inequities in mental health and suicide prevention. Thus, we are committed to ensuring that any system aimed at addressing suicide is accessible for all.
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.
