We embarked on an effort to quantify the impact of stressors in navigating the healthcare system on patients and systems. We hope that this research leads to solutions.
Take our healthcare stress survey and help us quantify the challenges patients face!
Survey link below and $15 compensation
We recognize that the patient voice has been missing for far too long. The medical system is stressful and complicated for patients and their families. For this reason, we embarked on an effort to quantify the impact of stressors in navigating the healthcare system on patients and systems. We hope that this research leads to solutions.
October 24th, 2018 marks the 25th anniversary of Tracy Latimer’s death by homicide. On this day in 1993, 12-year-old Tracy would be loaded into the cab of her father (Robert Latimer)’s truck. Mr. Latimer would run a hose from the exhaust pipe into the cab, and start the engine. Tracy died by carbon monoxide poisoning. She had cerebral palsy. Mr. Latimer claimed that he was nobly ending his daughter’s suffering; he was charged with 2nd-degree murder.
To be clear, Tracy Latimer was murdered. She had a disability, and she was murdered. Those two facts don’t cancel one another out. Nonetheless, Tracy’s life and death are instructive when applied to current day discussions of Medical Assistance in Dying (MAiD). Tracy’s story brings light to the vulnerability that children with disabilities face navigating both life and death.
Are those deliberating offering MAiD to mature minors remembering Tracy Latimer today? They should be. They should be ensuring that under no circumstance will parents be able to murder their children through the Canadian medical system. By continuing to chip away at the laws protecting against assisted suicide, while simultaneously failing to put adequate safeguards in place, we are creating space for this kind of misuse.
Tracy was particularly vulnerable because those entrusted with her care decided that her life was not worth living. She, like all children, was dependent on her family for her survival, for her medical care, food, and shelter. In this case, her support system was broken. Tracy was not just at risk because she had a disability, she was at risk because she was a child who needed others.
We hope you will join us for our #TechTuesday Training Series this year.Session 13 of the training series will be aboutWhat’s New In MATP InventoryYou will learn how to use various Assistive Technology (AT) products and devices. We will be highlighting new devices that have been added to our inventory!Tuesday, November 8, 2022, 12 to 1 PMThis training is free. CART captioning and ASL Interpreting will be provided.Register in advance for access to the live session and the recording for future viewing:
Mixed results with green light therapy for fibromyalgia.
Researchers continued to build a case for green light therapy in the chronic pain population, despite rocky preliminary data from a small randomized trial.
Among 34 opioid users with fibromyalgia, the 12 randomized to wear green glasses trended nonsignificantly toward reduced anxiety on the PROMIS-57 scale compared with peers who wore blue or clear glasses instead (median -3 vs +3.5 vs +2 points, P=0.11).
The null result persisted upon adjustment for age and compliance, but there was a signal that green glasses could reduce fear-based anxiety in particular (P=0.03), reported Amanda Nelli, MD, a postdoctoral researcher at Duke University Medical Center in Durham, North Carolina, at this year’s American Society of Anesthesiologists (ASA) annual meeting.
Operating the nation’s largest health care system, the Department of Veterans Affairs’ (VA’s) uses a wide variety of technologies to ensure excellence in care delivery. New technologies are revolutionizing health care, and VA is recognized as a world leader in the development and use of telehealth.
Telehealth services are mission-critical to the future direction of VA care to Veterans. Telehealth increases access to high-quality health care services by using information and telecommunication technologies to provide health care services when the patient and the practitioner are separated by geographical distance. VA is committed to increasing access to care for Veterans, and has placed special emphasis on those in rural and remote locations.
In person, people with disabilities often experience microaggressions – comments or subtle insults based on stereotypes.
New types of microaggressions play out online as well, according to new Cornell-led research.
The study finds those constant online slights add up. Microaggressions affect self-esteem and change how people with disabilities use social media. And due to their subtlety, microaggressions can be hard for algorithms to detect, the authors warn.
“This paper brings a new perspective on how social interactions shape what equitable access means online and in the digital world,” said Sharon Heung, a doctoral student in the field of information science. Heung presented the study, “Nothing Micro about It: Examining Ableist Microaggressions on Social Media,” Oct. 26 at ASSETS 2022, the Association for Computing Machinery SIGACCESS Conference on Computers and Accessibility.
When microaggressions occur in live settings, they are often ephemeral, with few bystanders. “When they happen on social media platforms, it’s happening in front of a large audience – the scale is completely different and then they live on, for people to see forever,” said co-author Aditya Vashistha, assistant professor of information science in the Cornell Ann S. Bowers College of Computing and Information Science.
Additionally, social media platforms can amplify microaggressions, potentially spreading misinformation.
Famous for pushing Berkeley to install the country’s first curb cut, the center has also broken ground with its peer counseling program and now helps around 1,000 people per year.
“The ‘solution’ for most of us, if we hadn’t been fairly strong people and in a place like Berkeley, is that we would have been warehoused away in some institution,” Edward V. Roberts, a quadriplegic, told The Berkeley Daily Gazette in 1974. “Our society isn’t given to helping blind and disabled people to be more independent.”
Roberts, who in 1962 had been the first severely disabled student to attend UC Berkeley, was executive director of the newly formed Center for Independent Living in Berkeley.
This year the center celebrates its 50th anniversary as the birthplace of the modern independent living movement, which championed the right of people with disabilities to lead independent lives.
“Our mission is to offer services and advocacy for people with disabilities to live independently in the community and away from institutions,” said Ted Jackson, who took the helm as the CIL’s executive director in March. “We do that by providing everything from skills and travel training to advocacy and working to change policy — anything that helps a disabled person be independent.”
The Workforce Recruitment Program (WRP) is a recruitment and referral program that connects federal and private-sector employers nationwide with highly motivated college students and recent graduates with disabilities who are eager to demonstrate their abilities in the workplace through summer or permanent jobs.
Students, Recruiters, Employers, and School Coordinators can register to participate.
Mental illnesses are often referred to as “invisible illnesses,” which is what can make them so challenging to understand and talk about. It’s easy for people to assume what you’re going through is “all in your head” when it seemingly only affects your mood and emotions.
But the truth is, mental illnesses can manifest physically, too. That’s why we asked our Mighty mental health community to tell us some surprising physical symptoms they experience because of mental illness. Because by talking about all aspects of mental illness, we can continue to break the stigma and misunderstanding that surrounds mental health.
Here is what they had to say:
1. “Constant tension
2. “Grinding my teeth
3. “A sore throat.
4. “My anxiety causes my body to swell like a balloon.
If you would like to learn more about how independent facilitation works in the person-centered planning process, please click the link below to view and download an infographic in PDF format outlining the process:
If you would like to find a trained indepedent facilitator near where you live, please visit the webpage linked below. You can browse independent facilitators by the county in which they live and work.