159. What is sepsis and septic shock?

From The Nursing Home Abuse Podcast: For Entire Post, Go Here…

Sepsis is consistently in the top ten causes of death every year.

Why are nursing home residents susceptible to sepsis and septic shock?

When is a resident who has been hospitalized or killed by sepsis allowed to sue a nursing home?

In this week’s episode, we talk about this deadly illness, precautions that nursing homes should to take, and when a lawsuit may be filed in Georgia.

UC Berkeley is disavowing its eugenic research fund after bioethicist and other faculty call it out

By TERESA WATANABE: For Entire Post, Go Here…

In late 2018, UC Berkeley bioethics professor Osagie K. Obasogie received a campus email about a research fund available to faculty members in the School of Public Health.

He was stunned by what he read.

The Genealogical Eugenic Institute Fund, the email said, supports research and education in eugenics — a field discredited after World War II as a horrifying ideology that sought to use science to improve the human race by promoting traits deemed superior and breeding out those judged undesirable. The judgments aligned strongly with social biases that favored white, able-bodied and financially stable people.

Eugenics was used as a justification for Hitler’s Nazi Germany to kill 6 million Jewish people, and U.S. authorities to forcibly sterilize more than 60,000 people in California and more than 30 other states largely in the early 20th century.

But Berkeley’s eugenic research fund has been very much active.

The $2.4-million fund was offering an annual payout of about $70,000 in fiscal year 2020 to support research and education on policies, practices and technologies that could “affect the distribution of traits in the human race,” including those related to family planning, infertility, assisted reproduction technologies, prenatal screening, abortion, gene editing and gene modification, the email said. That “modern definition of eugenics” included “perspectives that shed light on not only the benefits but also the limitations and the ethics of these alternative approaches to improving the human race.”

“I was shocked and dismayed,” Obasogie told the Los Angeles Times. He, along with a small group of faculty, raised their concerns with the email’s author, a former senior administrator.

A letter to my younger self

By Aubrie Lee: For Entire Post, Go Here…

About the author: Aubrie Lee is an artist with an engineering degree from Stanford University. She enjoys riddles, holographic foil, and jackets with inside pockets. You can follow her on Twitter and find more of her work at aubrielee.com.

To a younger me,

I’m writing you the letter I wish I had gotten when I was diagnosed. “Infantile-onset facioscapulohumeral muscular dystrophy” gives you a name for why you’ve never been able to smile, why you get more tired than other kids, and why you can’t lift your arms above your head anymore. The diagnosis will also improve your spelling (I found the journal you left for me about wanting to become a “syentest”).

About those other kids, you don’t have to be shy like I was. When they ask you why your lips stick out, take the opportunity to make a new friend. You’re self-conscious now, but people pay money for shots to make their lips look like yours (I’m not sure how much money, but it’s more than you’ve ever gotten in a hong bao). And one day, when your muscles have weakened to the point where kids are asking you why you walk “different”, a stranger will go out of his way to respectfully tell you, “You’re very beautiful.” You won’t know what to say. As he walks away, you’ll realize that his back is disfigured, and you’ll wish you could thank him all these years later.

When people hurt you, you will call yourself a mirror that reveals their true character. But that’s not the mirror that matters. Hold yourself up to other Disabled people. See their beauty. See your beauty in them, and let them see theirs in you. You’ve always been proud of your mind, but you think of it as your body’s redemption. Be proud of your body. No one can cure muscular dystrophy. But no one can choose it, either. The perspectives you’ll get to behold, the beauty you’ll get to embody, people cannot even pay for, though they may try.

Question whether people’s lessons are lies. They can’t tell the difference.

  • “Survival of the fittest.” Genetic mutations like yours aren’t an exception to evolution; they are its mechanism. But biology doesn’t determine your worth anyway. Forget Darwin. You have the same rights as all humans do. You deserve to live and to create life.
  • “According to Maslow’s hierarchy of needs.” Maslow wrote that “the study of crippled … and unhealthy specimens can yield only a cripple psychology and a cripple philosophy.” His hierarchy was not meant for you; it was meant to erase you. Forget Maslow. Raze his pyramid to the ground and build your shining cripple philosophy on its ruins.
  • “Focus on what you can do, not what you can’t do.” Ability is not the goal. Autonomy is. Focus on what you want to do, and if you can’t do it, fix whatever systems stand in your way. It’s wrong that you should have to be the one to fight the ableism that holds you back, but as with every wrong, use it as fuel for a sun’s worth of fire.

Free yourself from the curse they call a cure. Don’t believe them—there’s nothing wrong with you.

You’re not a blemish.

You’re not a burden.

You’re not a broken thing.

I should have told you this sooner, and I’m sorry.

NDEAM 2020: Building a Future That Works

From USDIL Blog By Jennifer Sheehy: For Entire Post, Go Here…

This October is the 75th anniversary of National Disability Employment Awareness Month (NDEAM), which happens to fall in the same year as we’re celebrating the 30th anniversary of the Americans with Disabilities Act, or ADA. To celebrate, the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) held a virtual event this week focused on increasing access and opportunity through accessible technology.

Accessible technologyis key to advancing the employment success of people with disabilities and delivering on the promise inherent in the ADA. As our workplaces continue to evolve and advance, we know that new, emerging technologies will play an increasingly central role in how we get to work and how we perform on the job.

During the event, we explored some of those exciting innovations with technology thought leaders, disability advocates, and experts in accessibility, transportation, and emerging technologies. Watch the full program: https://www.youtube.com/embed/kGsMrKuMzdw

Some key takeaways from the event include:

National Family Caregivers Month

From ACL: For Entire Post, Go Here…

Visit ACL’s NFCM page for graphics, hashtags, links, and more.

National Family Caregivers Month: Recognize, Assist, Include, Support, Engage

Every November, National Family Caregivers Month (NFCM) recognizes and honors family caregivers across the country. Led by Caregiver Action Network, it is also an opportunity to raise awareness of caregiving issues, educate communities, and increase support for caregivers.

ACL is a proud observer of NFCM, but works year-round through programs and councils to engage, support, and empower caregivers. For NFCM 2020, ACL created a special materials page to help you join us as we #RAISEcaregiving next month.

Another casualty of COVID: testing for lead poisoning in Michigan

By Robin Erb: For Entire Post, Go Here…

Flaking off of porch posts, the muted yellow paint is hardly noticeable on this bright autumn day as 8-year-old Lloyd Toliver tosses a football in the front yard and his baby brother, Ean, watches a brilliant blue sky from his grandmother’s arms.

But paint like this on this fourth-generation home can carry poison for these two boys. Particles of lead-based paint slough off into the air, fall to the floor and can be inhaled by children or swallowed by toddlers — disrupting the brain and leading to possible learning difficultiesmental health issuesaggression or behavioral problems. In rare cases, it can kill.

In a pandemic year, though, the precious little attention that Michigan public health agencies pay to such hazards has dwindled even further.

In a five-month period — from March through July — lead testing was performed on just over 32,000 children in Michigan. That’s half the number of children tested when compared to the same months in previous years.

New Hampshire Expands Guardian Authority for Life-Sustaining Treatment

From the Medical Futility Blog: For Entire Post, Go Here…

ngd- What this means in New Hampshire is that if you want to be treated and live and your guardian wants you dead because there isn’t enough money for the guardian with you living, too bad for you..

The Supreme Court of New Hampshire has issued a second 2020 opinion on the scope of guardian authority to make decisions about life-sustaining treatment for a ward. 

In its prior opinion, the court determined that guardians have the authority to make such decisions unless limited by the court. In the newer opinion, the court made two holdings. 

First, it held that a court may not limit a guardian’s authority to withhold life-sustaining treatment unless the court deems such action desirable for the best interests of the ward.

Second, and more controversially, the court held that when a guardian makes a decision to withhold life-sustaining treatment, the guardian is guided by the best interest standard and not by the ward’s known preferences and values. In other words, the guardian’s job is NOT to place herself into the position of the ward and do what the ward would have done. 

While this reading may have been required by the text of the relevant statutes, it contradicts the bulk of rules and principles on surrogate decision making.  

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Apple’s Jeff Bigham, disability rights lawyer Haben Girma, author Sara Hendren and more to join Sight Tech Global

By Ned Desmond: For Entire Post, Go Here…

The other day we announced the first ten sessions for Sight Tech Global, a virtual event Dec. 2-3 that is convening the world’s top technologists to discuss how AI-based technologies are revolutionizing the future of accessibility. Today, we’re pleased to announce three additional sessions. Registration is free and and open now.

Designing for everyone: Accessibility innovation at Apple

Inventing the accessible future, by collaboration or by court

What can a body do? How we meet the built world

The Thoughtful Vegetable: How Did Stephen Hawking Type?

By Angela Ronson: For Entire Post, Go Here…

People forget how disabled Stephen Hawking was. I use one finger to type. He didn’t move an arm. He didn’t use any fingers and he typed!

You didn’t hear his voice. That was computer generated. He first had to type what it would say. It took me forever to figure out how he did this.  Maybe if my eyes were better back when I looked I would have seen. I see it now.

Stephen Hawking had one small muscle in his cheek on his face that he could flex. He would wear a device  or modified glasses. It was so inconspicuous that you couldn’t tell.

DD Councils and P&As: Trailblazers for Inclusion

By Sara Newell-Perez: For Entire Post, Go Here…

This month we celebrate two milestones for people with developmental disabilities, their families, and the country: 50 years of State Councils on Developmental Disabilities and 45 years of Protection and Advocacy (P&A) systems. As two parts of the trio of programs that make up the Developmental Disabilities Act network on the ground in every state and territory, these programs have worked alongside individuals with intellectual and developmental disabilities (ID/DD) and their families to increase opportunities for community living. Both milestones offer us the chance to collectively reflect on, and celebrate, how much a group of dedicated self-advocates, family members, and professionals working together can achieve. 

A half century ago, the lives of individuals with ID/DD looked quite different. Many had few, if any, opportunities to live, work, learn, and ultimately, thrive in the community. People with ID/DD and their families were rarely at the table when decisions were being made about policies and systems that impacted their lives. The work of Councils and P&As have transformed our communities and our country. This has resulted in empowered individuals with ID/DD who are advocates for themselves and are a voice of influence creating long-term solutions for others.

Since their creation 50 years ago tomorrow, Councils have harnessed the strength of their communities and their connections to individuals with ID/DD, families, providers, and state agencies to expand the skills, resources, and access of people with ID/DD and their families. Today, we have seen how this advocacy has translated into improvements across the life span in a host of areas – from education, to healthcare, employment, transportation, housing, and community supports. Over time, we have seen how supporting innovation, educating policymakers, and building the leadership capacity of individuals with ID/DD can drive needed change.

In 1975, P&As were added to the Developmental Disabilities Assistance and Bill of Rights Act as a result of growing public awareness of the appalling conditions faced by many people with ID/DD living in institutions. P&As have served as both a shield against abuse and neglect and an advocate for rights. Over the years, they have offered individuals with ID/DD a critical legal advocacy resource to assist them when they are facing discrimination or are experiencing abuse or neglect. Over the past 45 years, P&As have been involved in a significant number of landmark cases and today they work to implement the U.S. Supreme Court’s 1999 decision in Olmstead v. L.C. Their monitoring work remains crucial to ensuring people with ID/DD live free of abuse and neglect.