House Panel Unhappy With VA Official’s Answers During Hearing on EHR System

by Joyce Frieden: For Complete Post, click here…

Several House members weren’t very happy with the answers they got Thursday at a hearing on progress with the new electronic health record (EHR) system being implemented at the Department of Veterans Affairs (VA).

“I can appreciate that you inherited a mess, and that you are in the middle of sorting through the morass, but unfortunately your responses to our questions about patient safety really aren’t detailed enough,” Rep. Debbie Wasserman Schultz (D-Fla.), chairwoman of the House Appropriations Subcommittee on Military Construction, Veterans Affairs, and Related Agencies, said to VA deputy secretary Donald Remy, who was confirmed by the Senate in July. “I realize you’re doing the best you can to answer, but we’re just not really getting enough detail in your answers.”

Grieving Who I Was Before My Mental Illness Diagnoses

By Simone Yemm: For Complete Post, click here…

ngd- Grief is a normal part of dramatic personal and life change, and is the first step in recovery…

Once upon a time, I was a whole egg. My runny, gooey insides were safely cocooned in a solid, outer shell. I felt whole.

Then I fell off my perch and the shell cracked. The soggy, fragile contents spilled out and there was nothing holding me together. I was a mess.

I shook and I wept and I panicked. Sorrow and sadness wrapped themselves around me like a cloak. I learned really bad ways of avoiding the emotional baggage I’d hidden away all my life. I didn’t know how to cope anymore.

The trouble with breaking something as brittle as a shell is it can never go back to the way it was. It can be patched and stitched and glued. It can be held together with Band-Aids or covered in clingfilm. But it can never be whole again.

I am eternally cracked

The National Council of Dementia Minds

From NCDM: For Complete Post, click here…

The National Council of Dementia Minds (NCDM) is a not-for-profit organization led by persons living with dementia whose vision is to transform the worldview of living with a Neurocognitive Disorder (NCD).

Since May of 2019, NCDM has been proud to be a model of equity and inclusion as we are governed by a board of directors who are living with various types of dementia.

We are a group of individuals who are committed to living our best lives and sharing this experience with others. We advocate for inclusion and equity for persons living with dementia in all aspects of private and public life. We embrace the diversity of persons affected by NCD as well as the multiple types of dementia. Together we promote our strategies to enhance our well-being and refute the misconceptions of living with dementia.

To achieve our vision, we develop and support Dementia Minds groups (persons living with dementia) who create opportunities for dialogue and education for persons living with dementia, licensed health care professionals, researchers, families, care partners, policymakers, and communities at large about strategies to live well with Neurocognitive Disorders. The National Council of Dementia Minds is proud to report that we have provided educational opportunities for over 3,000 people in four countries.

Lethal, highly addictive methamphetamine again stalking rural Michigan

By Ted Roelofs: For Complete Post, click here…

ngd-I have been watching meth/stimulant surges since the late ’60s-some kind of cycle that destroys people. goes away and comes back…

n an Upper Peninsula courtroom, Circuit Court Judge Brian Rahilly leafed through the pages of his Sept. 22 criminal docket in Alger County. The defendants scheduled to appear before him fit a familiar pattern.

Nine of 20 cases that day involved charges tied to methamphetamine ─ from possession to delivery or manufacture of the drug, including one case that also charged an assault.

“Just off the cuff,” the judge said, “I would say most days half of my criminal docket is meth and it’s probably higher than that.”

Rahilly has been on the bench since January, following his election last year to the circuit court, which spans four rural counties. 

“For every 10 cases involving meth, I might get one involving another substance; it’s not even close,” he said. 

Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide

From Not Dead Yet: For Complete Post, click here…

“If this bill passes, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.”

– Marilyn Golden, Disability Rights Education & Defense Fund

The purpose of this Toolkit is to give disability rights advocates an organized set of resources to assist in defeating proposals to legalize assisted suicide in state legislatures.  The Toolkit is divided into seven brief sections, each consisting of basic information and links to related resources with more information.  The seven sections are:

  1. Why disability advocacy groups oppose legalizing assisted suicide
  2. Educating and organizing disability opposition
  3. Meeting with legislators and policy leaders
  4. Testifying at hearings
  5. Working with the media
  6. Conducting direct actions – leafleting, rallying
  7. Working in coalition

All of the major national disability groups that have taken a position on assisted suicide oppose bills to legalize the practice as a matter of public policy.  The disability role in defeating these bills has increased in visibility and importance in the last few years as both media and various stakeholders have acknowledged our effectiveness.  It is critical that our voice be heard wherever assisted suicide bills are introduced and considered.

New auto insurance law forcing severely injured people to scramble for scarcer and scarcer care

By Tracy Samilton: For Complete Post, click here…

The first thing you notice about Jake Veeder is his horrific injuries. The second thing you notice is his absolutely killer smile, the kind that lights up his whole face.

His mother is Tricia Smith. She has the same smile.

People mistake the two for brother and sister, or worse, girlfriend and boyfriend, all the time.

“I hate it,” the 23-year-old Veeder said, with just a tiny hint of that killer smile.

I met mother and son, along with Melanie Olson, Veeder’s medical case manager, outside his new home, Maple Manor in Novi. Veeder has some speech difficulties from a brain injury, so I asked Smith to tell me what happened to him.

Like practically everyone with a story about a catastrophic car accident, she started it the same way. With the date.

“It was on November 17, 2018,” said Smith. “He was the passenger in a vehicle that lost control, and they ended up flying off the road. The car flipped over, and Jake was pinned inside for about 40 minutes. It was on fire, so a lot of his injuries came from him burning.”

Smith said no one ever thinks it’s going to happen to them — going suddenly from a normal life, to living in a nightmare. His injuries were extensive. Closed head injury. Burns over 40% of his body. A broken orbital bone. A dissected carotid artery. The list goes on.

Veeder was 20 at the time of the accident. Like everyone in Michigan in 2018, he had lifetime medical on his car insurance policy. The cost of his care has been jaw dropping.

First, there was the three months in the hospital burn unit.

“Just his bill at Hurley alone was $2.98 million,” Smith said.

Then, a transfer to Mary Free Bed, a pediatric rehab hospital. Then, a transfer to Origami Rehabilitation, a comprehensive residential rehab facility.

“Last I checked we were just over $10 million,” she said. She glances at her son in a way that somehow combines humor, sorrow, and affection. “Yeah, he’s the $10 million man.”

Melanie Olson is Veeder’s medical case manager. Case managers help people with complex medical conditions get the care they need.

Olson said Origami offers one-on-one care, a brain injury rehab program, adaptive equipment to become more independent. A social life.

“He was doing phenomenal at Origami, in Lansing, weren’t you, Jake? He was making so much progress,” she said.

But in July 2021, insurance companies began paying providers less than their actual costs. The new law lets them do that. Veeder’s insurance company, Progressive, told Olson that he had to find someplace cheaper.

To Study Zika, They Offered Their Kids. Then They Were Forgotten.

BY MARIANA LENHARO: For Complete Post, click here…

Years after agreeing to take part in research, families of children with congenital Zika syndrome are feeling abandoned.

ROCHELLE DOS SANTOS LEARNED that her daughter would probably be born with microcephaly — a condition where a baby’s head is much smaller than expected — when she was seven months pregnant. It was 2016 and Brazil was going through an unprecedented microcephaly outbreak associated with the mosquito-borne virus Zika. After the baby was born and the diagnosis of congenital Zika syndrome was confirmed, several researchers approached dos Santos to see if she’d join relevant clinical studies. Eager to understand her daughter’s condition, she agreed.

Dos Santos says she was surprised to learn through a social media post last year that an international study that she participated in had been published in the journal Brain & Development. The study took over a year to be completed, and dos Santos had taken her daughter multiple times to the hospital for evaluations. As the head of an association for families of children affected by Zika in Goiás state in midwest Brazil, dos Santos wanted to share the findings with the other caregivers. She says she had to reach out directly to Hélio van der Linden, a neurologist at the Dr. Henrique Santillo State Center for Rehabilitation and Readaptation who authored the study in partnership with researchers in Brazil and the United States, to ask that a copy be shared with her. But she says he told her there was no point because it was written in English.

“Of course, we get upset,” she recalled in her native Portuguese. “We want to have this feedback and better understand this situation that is new for everyone.” Dos Santos — who noted that while she speaks only a little English, her husband reads and speaks English capably — said she feels used and that many other families share the same sentiment. “We know that Covid is now the priority,” dos Santos adds, “but our children are still here, they still have needs.”

The Hospital Occupation
That Changed Public Health Care

By Emma Francis-Snyder: For Complete Post, click here…

On July 14, 1970, members of the Young Lords occupied Lincoln Hospital in the South Bronx — known locally as the “Butcher Shop.” A group of activists, many of them in their late teens and 20s, barricaded themselves inside the facility, demanding safer and more accessible health care for the community.

Originally a Chicago-based street gang, the Young Lords turned to community activism, inspired by the Black Panthers and by student movements in Puerto Rico. A Young Lords chapter in New York soon formed, agitating for community control of institutions and land, as well as self-determination for Puerto Rico. Their tactics included direct action and occupations that highlighted institutional failures.

Through archival footage, re-enactments and contemporary interviews, the documentary above shines a light on the Young Lords’ resistance movement and their fight for human rights. The dramatic takeover of Lincoln Hospital produced one of the first Patient’s Bill of Rights, changing patients’ relationship with hospitals and doctors nationwide.

13 Lies People With Depression Tell

By Sarah Schuster: For Complete Post, click here…

We know depression is a liar. It tells us we’re worthless, that nobody cares about us and that we’re alone. Even if we know deep down these things aren’t true, depression can be convincing — and its lies can be hard to escape.

Sometimes, depression can make us liars, too.

Maybe you lie when you’re depressed because you’re afraid your family won’t understand. Maybe you’ve been burnt before, or you worry revealing how you really feel will burden the people you love.

Whatever the reason you lie, it’s important to know you’re not the only one who feels this pressure — and that finding even small ways to be more truthful can have a huge impact on your depression journey as a whole.

To better understand why people lie when they’re depressed, we asked our mental health Mighty community to share what lie they tell when they’re struggling — and why they tell it.

Amazon launches an elder care subscription service, ‘Alexa Together’

By Sarah Perez: For Complete Post, click here…

Amazon today announced a new subscription service called “Alexa Together,” designed for families with aging family members who are still living independently, but who may need extra support. The $19.99 per month subscription expands on Amazon’s existing product, Alexa Care Hub, an earlier investment in elder care, by taking many of Care Hub’s features and adding on new protections, like an urgent response feature and access to a professional emergency helpline.

The company in November 2020 first introduced Care Hub, an option in the Alexa mobile app, which has allowed family members to keep an eye on older parents and loved ones — with their permission — in order to receive general information about their activities and to be alerted if the loved one has called out for help.

With Alexa Together, family members can continue to access features like care alerts, which are designed to keep family members in the loop when an aging family member asks Alexa for help.