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Blog with us!

The Center for Dignity in Healthcare for People with Disabilities invites your blog submissions.

General Submission Guidelines

  • We are looking for submissions about healthcare inequities faced by people with disabilities and proposed solutions to make healthcare more equitable. We want posts that will educate, inform, empower, and challenge people to think in new ways.
  • We are open for submissions year-round.
  • Guest blog posts are usually between 500 and 1,000 words. Please include a short bio and a photograph with your submission.
  • The Center for Dignity team may work with you to edit your blog. Our publication schedule varies. Please allow at least one week between submission and proposed publication date.
  • Authors and photographers have rights. Please credit others’ work in your submission and cite our blog if you republish.
  • Following publication, we will share your blog post via Facebook, Twitter, and our newsletter.

Accessibility

We are committed to accessibility. Please use alt-text and captions for images. Do your best to write in plain-language. We will only post videos that are captioned.

How to Submit

Send your 500-to 100-word posts with a suggested title wo [email protected]. Include a brief bio, picture with image description, and social media accounts that you’d like to share.

#WebinarWednesday

September Webinars

Mark your calendar for #WebinarWednesday. During the month of September, The Center for Dignity will be hosting #WebinarWednesday each week at 12pm (EST). During each session we will present medical recommendations to close the gap in healthcare inequities for people with disabilities.  Wednesday, Sept 7th: Prenatal Diagnosis. Wednesday, Sept 14th: Mental Health/Suicide Prevention. Wednesday, Sept 21st: Organ Transplantation. Wed, Sept 28th: Aging/End of Life.

During the month of September, the Center for Dignity will be hosting a webinar each Wednesday to present and discuss the recommendations from all four of our subcommittees. ASL Interpreters will be provided. Bring your lunch (or breakfast if you’re on the West Coast) and join us for a panel discussion on recommendations to close the gap in healthcare inequities among people with disabilities. To register for all 4 of our #WebinarWednesday (or just one), please click here.

In Response to the Reversal of Roe v. Wade and Its Impact on People With Disabilities

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. 

While many urge for reproductive rights, arguing that people should have access to abortion so that they are able to control whether or not they are pregnant, we would also like to call for more reproductive justice. By this, we mean that we call for a system that looks at unjust reproductive control as a whole. Unfortunately, disenfranchised people, and including people with disabilities, not only lack access to the option to terminate a pregnancy, but also lack the support and healthcare to choose to become pregnant. Many of these women are usually multiply marginalized (BIPOC, Poor, Queer, etc) and often report not having equitable access to any type of reproductive medicine. Thus far, their stories have been excluded from much of the dialogue around the overturning of Roe.

"While many urge for reproductive rights, arguing that people should have access to abortion so that they are able to control whether or not they are pregnant, we would also like to call for more reproductive justice. By this, we mean that we call for a system that looks at unjust reproductive control as a whole." 
Image of Center for Dignity Logo and row of 5 faceless people standing together.

Research shows us that these healthcare inequities for people with disabilities exist due to a system rooted in ableism and stigma that produces a lack of access. This begins with a lack of access to sex education, which leads to many people with disabilities deprived of a full understanding of their options for controlling their own reproduction. For those that have had access to sex education within their communities, many people with disabilities report being removed from these opportunities due to ableism and stigma that people with disabilities are de-sexualized and are not or should not be having sexual relations to begin with. This de-sexualization of people with disabilities also further creates gaps in access to birth control and/or morning after pills as providers often make ableist assumptions about reproductive health. 

Access to abortion and reproductive health is a matter of healthcare equity and must be part of trauma informed care.  Many people with disabilities experience health conditions associated with their disability that require abortion access. These health conditions make pregnancy risky for the life and health of the disabled person. Further, we know that 83% of women with disabilities (Stimpson & Best, 1991) experience sexual violence in their lifetimes. This number is double to that of their nondisabled peers. Access to abortion services is vitally important in these situations.

The Center for Dignity in Healthcare for People with Disabilities strongly encourages a framing of reproductive justice that takes a more holistic view of access to reproduction and all of the health supports it entails. The health care inequities against people with disabilities is explicit and interferes in people’s reproductive choices at all levels- in both choosing a pregnancy and in choosing to terminate a pregnancy. 


The Center for Dignity in Healthcare for People with Disabilities Comments to Communications Equality Advocates Petition for Reconsideration

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. 

While we commend the effort to secure a three-digit dialing code for accessing mental health services in time of crisis, by not adding text-to-988 capabilities and not ensuring Direct Video Calling capabilities, the system will have failed many of those it aims to help. This is because the three digit dialing code will not be universally accessible.  In particular, people who are deaf or hard of hearing and in crisis will not have access to this life saving resource. This lack of equity would be a problem by itself, but it is even more amplified by the fact that the data show a higher than average rate of suicidality in some segments of the deaf and hard of hearing population. For example, in a recent study examining hearing and nonhearing college students, it was found that, in fact, Deaf and hard-of hearing women reported a significantly higher suicide attempt rate than hearing women.   

Further, it also appears that by failing to include the text-to 988 capabilities and Direct Video Calling Capabilities, this new service will be in direct violation of disability civil rights law that has been the law of the land for decades.  First, Section 504 of the Rehabilitation Act of 1973 states that “No otherwise qualified individual with a disability in the United States, as defined in section 705 (20) of this title, shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service.” Given that the proposed three-digit dialing code for accessing mental health services in time of crisis is a federally sponsored program and that deaf and hard of hearing individuals experiencing a mental health crisis are 

certainly otherwise qualified to receive this service, not providing access to them by way of the text-to 988 capabilities and Direct Video Calling Capabilities seems to be in direct violation of this legal protection.  

Further, the National Suicide Prevention Lifeline, which will receive all contacts from the three-digit dialing code for accessing mental health services in time of crisis is a clear example of a Public Accomodation that is bound by Section III of the Americans with Disabilities Act of 1990. Specifically, § 36.202 (a) reads, “A public accommodation shall not subject an individual or class of individuals on the basis of a disability or disabilities of such individual or class, directly, or through contractual, licensing, or other arrangements, to a denial of the opportunity of the individual or class to participate in or benefit from the goods, services, facilities, privileges, advantages, or accom-modations of a place of public accommodation.”  Even more specifically, with regards to deaf and hard of hearing people being denied access to publicly available services, § 36.303 states that “A public accommodation shall take those steps that may be necessary to ensure that no individual with a disability is excluded, denied services, segregated or otherwise treated differently than other individuals because of the absence of auxiliary aids and services.”  It goes on to specifically define auxiliary aids and services as including “voice, text, and video-based telecommunications products and systems, including text telephones (TTYs), videophones, and captioned telephones, or equally effective telecommunications devices; videotext displays; accessible electronic and information technology; or other effective methods of making aurally delivered information available to individuals who are deaf or hard of hearing.”

There seems to be a clearly established mandate for making these services accessible to the deaf and hard of hearing community that even goes beyond existing civil rights law.  For example, the Twenty-First Century Communications and Video Accessibility Act (CVAA) includes “provisions to ensure that people with disabilities have access to emergency information such as the next generation of 911 services and emergency information on the television.”  This seems to establish a clear precedent for doing the same with 988 services.  Both 911 and 988 services are envisioned as nationwide, 3 digit points of access for all Americans in times of emergency.  Both ought to be accessible to anyone who may have a need to call upon them.

 References:
1. Samar, V., Pollard R., O’Hearn A, Lalley P., Sutter, E. Barnett S., Klein J., Finigan E., Steider A., Starr M., Havens C., Dean R., David T., Testa-Wojteczko B., Fogg T. (April 2009). Deaf Students & Suicide: The Peculiar Relationship of Gender, Reading & Suicide [Conference Poster] ADARA San Antonio. https://www.urmc.rochester.edu/MediaLibraries/URMCMedia/ncdhr/publications-presentations/documents/SuicidePosterADARAapril2009.pdf

2. https://www.dol.gov/agencies/oasam/centers-offices/civil-rights-center/statutes/section-504-rehabilitation-act-of-1973

3.

https://www.ada.gov/regs2010/titleIII_2010/titleIII_2010_regulations.pdf

4.

https://www.fcc.gov/general/twenty-first-century-communications-and-video-accessibility-act-0

Supporting Equitable Access to Mental Health Services for People with Developmental Disabilities

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? 

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Clinical Trials and the Exclusion of People with Disabilities

By Stephanie Meredith

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/).

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Multi Colored Trim on a square box. Black text on white background reads: To Promote More Informed Healthcare and Greater Equity Towards People with Disabilities: 1. Insurance Coverage of independent genetic counseling. 2. FDA Regulation of Advertising claims made by testing labs. 3. better educational infrastructure for patients to understand testing and disabilities. 4. Insurance coverage of testing contingent on the provision of better patient education and access to independent pre-test and post-test counseling

In Response to the NY Times: Prenatal Screening and the Social Bias Against Disability

By Stephanie Meredith

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.

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Loss and COVID-19: The Toll on Children

Authored by: Tracy Waller, Esq., MPH[1]


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. 

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Evusheld Offers Hope for Many, but Access Remains an Issue

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.

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The Need for Disability-Inclusive Telehealth Services

by Hazel Jessica

Image of a female sitting at a desk in a wheelchair. The desk has pink flowers and a laptop computer. She is smiling and waving at the computer.

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.

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School Mask Mandates Across the Country

Written by: Tracy Waller, Esq., MPH

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. 

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