Disability Activists Hold Nationwide Protests of Proposed Medicaid Cuts

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ADAPT’s June 22nd protest in Washington, D.C. brought unprecedented public attention to disabled people’s profound fears about the very real and personal consequences of proposed cuts to Medicaid. It’s not an exaggeration to say that lives and liberty are at stake.

Rachel Maddow’s coverage on MSNBC was especially detailed in painting a clear picture of the disability activist group ADAPT. She reached back into the group’s history, showing news clips and footage dating back to 1978. I joined ADAPT protests for lifts on buses in 1987, and took a screenshot of this scene in which I was placed under police arrest.

Diane Coleman being pushed in her motorized wheelchair by a police officer who had arrested her.

ADAPT’s focus is the Medicaid home and community based long term care services that enable people with disabilities, including seniors, to live in our own homes and communities rather than be forced into nursing facilities. Those services allow people to live with their families, get an education, work and enjoy their communities like everyone else. Currently, Medicaid is required to cover nursing facilities, while in-home services are optional, so the proposed cuts will sacrifice the “optional” services that maintain the liberty of disabled Americans.

ADAPT and Not Dead Yet have long been very close. In 1996, one of ADAPT’s national organizers, Bob Kafka, came up with the name for our group, based on a running gag in Monty Python and the Holy Grail.

In the week since the Washington, D.C. protest of proposed Medicaid cuts, disability activists across the country have organized local nonviolent protests, taking the message to key U.S. Senators, as well as other politicians and government authorities. Many of the activists are Not Dead Yet staff, Board members and advocates. Anita Cameron, Carrie Lucas and I were arrested, Emily Wolinsky penned a strong letter to her Senators, Dominick Evans organized actions in Ohio and recorded a hard hitting You Tube message to Senator Portman, and I’m still gathering information. Links to some examples of coverage are below.

Disabled protesters arrested at Sen. Cory Gardner’s Denver office after 2-day sit-in (Denver Post, 6/29/17)

25 protesters arrested inside county GOP HQ (Democrat and Chronicle, 6/28/17)

Protesters stage overnight sit-in at Sen. Gardner’s office over health care bill (KDVR, 6/27/17)

Will Senate Republicans Have Enough Votes To Pass Their Health Care Bill? (NewsOneNow, 6/26/17)

Police Haul Off Protesters, Some With Disabilities, From Mitch McConnell’s Office (Huffington Post, 6/22/17)

Dozens arrested after disability advocates protest at McConnell’s office (CNN, 6/22/17)

GOP threat to Medicaid threatens liberty of millions of Americans (Rachel Maddow MSNBC, 6/22/17)

NDY Release: Disability Advocates Protest American Health Care Act

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[Note: This is NDY’s version of ADAPT’s Press Release, slightly revised to include a quote from Anita Cameron, who joined other disability activists for these protests.]

Not Dead Yet, the Resistance

Contacts:
Bruce Darling: (585) 370-6690
Anita Cameron (720) 413-9064

Disability Advocates Protest Senate Leader Over Cuts to Medicaid
for Millions of Elderly and Disabled Americans

(June 22, 2017, Washington D.C.) Today, about 60 members of the national disability rights organization ADAPT are staging a Die-in at Senate Majority Leader Mitch McConnell’s office. Advocates are protesting McConnell’s Senate healthcare bill, demanding he bring an end to attacks on disabled people’s freedom which are expected in the bill. “The American Health Care Act caps and significantly cuts Medicaid which will greatly reduce access to medical care and home and community based services for elderly and disabled Americans who will either die or be forced into institutions,” said Bruce Darling, an ADAPT organizer taking part in the protest. “Our lives and liberty shouldn’t be stolen to give a tax break to the wealthy. That’s truly un-American.”

Protesters include Anita Cameron, Not Dead Yet’s director of minority outreach, as well as other NDY activists. “For people who live in states where assisted suicide is legal, this will be a deadly combination,” Cameron said. “Insurance companies will be more emboldened to deny people with life-threatening conditions the medications they need to save or prolong their lives, offering them instead, the ‘option’ of the suicide prescription.”

“Not only will AHCA take away our freedom,” said Dawn Russell, an ADAPT organizer from Colorado. “That lost freedom will also cost Americans much more money. The nursing facilities that people will be forced into are much more expensive than community-based services that AHCA would cut.” In 2012, the National Council on Disability (an independent federal agency that makes policy

recommendations to the President, Congress and federal agencies) reported that States spent upwards of $300,000 more per person serving disabled people in institutions each year than they would spend providing equivalent services in the community.

The protest falls on the 18th anniversary of Olmstead v. LC the 1999 Supreme Court Ruling which first recognized disabled people’s right to live in the community. ADAPT organizer Nancy Salandra of Pennsylvania was quick to note the connection between that case and the AHCA. “We fought so hard to have our right live in the community recognized and here we are 18 years later and we are still fighting for our freedom from incarceration.”

As they dramatize the deaths AHCA’s cuts and forced institutionalization will cause, and as Capitol Police close in, the advocates who came to McConnell’s office from across the country chanted “I’d rather go to jail than die without Medicaid!”

“To say people will die under this law is not an exaggeration,” said Mike Oxford, an ADAPT organizer from Kansas. “Home and community based services are what allow us to do our jobs, live our lives and raise our families. Without these services many disabled and elderly Americans will die. We won’t let that happen.”

On the 15th anniversary of the death of Justin Dart, the father of the ADA, his words ring true “get into politics as if your life depends upon it, cause it does.”

ADAPT’s history, the issues we are fighting for and our activities can be followed on our web site at www.adapt.org, our ADAPT Facebook page and on Twitter – look for #ADAPTandRESIST

Anita Cameron: American Health Care Act and Doctor Prescribed Suicide

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The American Health Care Act (AHCA) is dangerous for people with disabilities. If passed, among other things, it will most likely eliminate affordable insurance coverage for people with pre-existing conditions, cut $834 billion from Medicaid over ten years (most people with disabilities, including seniors, rely on Medicaid for personal care, long-term care services and supports and durable medical equipment), and make drastic cuts in primary healthcare programs and services that low income people rely on.

For people who live in states where assisted suicide is legal, this will be a deadly combination. Insurance companies will be more emboldened to deny people with life-threatening conditions the medications they need to save or prolong their lives, offering them, instead, the “option” of the suicide prescription.

The lives of people with disabilities are already devalued, and doctors are likely to either intentionally or unintentionally influence, recommend or coerce their patients into assisted suicide, citing the financial burden they will be on their families.

With services such as mental health on the chopping block in AHCA, newly disabled individuals, seniors or terminally ill people will have less access to these services, putting them at greater risk to succumb to coercion by unscrupulous family members, heirs, or caregivers to get the suicide meds and take them.

There is nothing good about the American Health Care Act. It is designed specifically to cut back any protections that people with disabilities and low-income folks had in healthcare under the Obama administration. It will make it that much easier to force people with disabilities, seniors and people on low or fixed incomes into assisted suicide should they be deemed—correctly or not–to have a terminal condition.

Doctor assisted suicide is about one thing only – the establishment of a two-tiered system of suicide prevention. If you are healthy or nondisabled and want to die you get suicide prevention services, whereas if you are sick or disabled you are encouraged and provided the means to commit suicide. The American Health Care Act, by its very nature, will make this deadly form of discrimination much easier to carry out.

John Kelly Examines Legislators’ Arguments Leading to Victory in Maine

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Not Dead Yet testimony featured in defeat of Maine assisted suicide bill

The situation was tense. The Maine State Senate had pulled off a stunner by passing assisted suicide bill LD 347 by a vote of 16-15. We were nervous because two years ago, it was the Senate that saved the day by stopping a bill passed by the House. Now we had to place our hopes in the House to prevent a huge win for assisted suicide proponents. Even though Gov. LePage promised to veto any bill coming out of the legislature, assisted suicide proponents would be able to confidently claim victory in the wait for a supportive governor.

The entire House took the bill up on May 23, and after a short debate, defeated LD 347 by a vote of 85-61. Relief! It was especially gratifying because a number of legislators used arguments from Not Dead Yet and Second Thoughts testimonies against assisted suicide to oppose the bill.

Rep Deborah Sanderson of Chelsea, Maine, used Not Dead Yet and Second Thoughts Massachusetts’ testimony in two separate short speeches, which we have now captioned and put up on YouTube. She stressed two things, the inevitability of misdiagnosis cutting short people’s lives (captioned video here) and the impossibility of knowing whether someone actually self-administered the drugs because no witness is required at the death (captioned video here).

Rep Sanderson referred to one of our best examples of how legalized assisted suicide puts people at risk who are not dying. Sanderson did not mention Jeanette Hall by name, but described the letter she wrote to the Boston Globe. Jeanette wrote that she voted for assisted suicide, and when she received her own terminal diagnosis, she asked her doctor for the lethal drugs. But her doctor persuaded her to try more treatment, and Jeanette learned that she wasn’t dying after all! Now more than a decade later, Jeanette urges people to reject assisted suicide.

Rep Stacey Guerin of Glenburn, Maine, made two strong arguments against the legalization of assisted suicide. First, it increases opportunities for and the likelihood of elder abuse. She refers directly to Not Dead Yet President and CEO Diane Coleman on the ease with which an abusive caregiver could engineer a suicide. She brought up the inevitability of suicide contagion, as adolescents compare their own troubles to the accepted suicides of older people. Her captioned video is here.

Rep Beth Turner of Burlington, Maine, rejected proponents’ arguments that it is all about individual choice. She followed Not Dead Yet in declaring the obvious: “We don’t live in pure isolation. One person’s decision to end their​ life and one legislator’s decision to sanction it would surely impact all of us. It would also send a message that some people are less valued, less worthy. That some lives deserve suicide assistance rather than suicide prevention.” Her captioned video is here.

It’s now been 21 years since Not Dead Yet formed to fight Jack Kevorkian and the death machine he used on distraught disabled people, more than half of whom were not terminal in any way. We swarmed the trial that finally put him behind bars. We have gone from being ignored to being quoted during legislative debates. So please keep writing letters, op-ed’s, and testimony – our hard work is paying off!

Four Years After His Death, Disabled 8-Year-Old’s Death in Organ Donation is Under Investigation

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The LA Times is reporting that the  death of a disabled 8-year-old boy in 2013 is currently under investigation by Los Angeles police and the DA office.

Back in 2013, Cole Hartman’s father found his son with his head submerged in their washing machine. Cole went into cardiac arrest, but paramedics were able to resuscitate him.

From the story:

Physicians at UCLA’s pediatric intensive care unit told Cole’s family that the child was not brain-dead but “would never recover normal neuro function and … could never awaken,” according to an entry in his medical chart.

The Hartmans decided to take Cole off life support and donate his organs. He was removed from the ventilator and, 23 minutes later with his family at his bedside, pronounced dead by an anesthesiologist.

Before getting into why there’s an investigation into Cole’s death – and why it’s happening four years after his death – here’s some info on Donation after Cardiac Death (DCD),  and what we call “rush to judgment.”

First, there are long established protocols regarding waiting times for recovery in brain injury cases, as were shared in this blog post:

I recently attended a medical ethics seminar held at the Rehabilitation Institute of Chicago that reaffirmed medical practice guidelines about brain injury. Doctors continue to agree that it is necessary to wait before they can predict brain injury outcomes with reasonable, though they also admit not total, certainty. For traumatic brain injury (e.g. car accidents), the waiting period is one year. For anoxic brain injury (e.g. stroke or heart attack), it’s three months.

And, experts say that children are more likely to recover from brain injury than adults, as discussed by doctors regarding the “end of life” case of Haleigh Poutre. Here are excerpts from a story by Joe Shapiro after 11-year-old Haleigh Poutre’s brush with an “end of life” judgment:

Dr. JANE O’BRIEN (Chief Medical Director, Franciscan Hospital for Children): Children’s brains are amazing. They are very plastic. There is often a lot of potential to reach levels that nobody expects.

SHAPIRO: There are 39 children living on the inpatient unit. They’re kids but with a difference. Most depend upon some piece of technology.

Dr. O’BRIEN: Many of them would have tracheostomy tubes or tubes that they need in order to breath. They might be attached to ventilators. Many of them rely on feeding tubes into their stomachs in order to get the nutrition that they need.

SHAPIRO: Typically, a child stays at the hospital for about three months.

Dr. O’BRIEN: People hear about children when they have accidents at the time because that’s often the newsworthy story. But most of the children who come into our hospital, go back out into the community and most of them, they’re able to go to school. They have much more recovery, I think, than most people realize is possible.

Also this:

SHAPIRO: Bernat’s a neurologist at Dartmouth Hitchcock Medical Center. He’s not the girl’s doctor. But he says its unusual to give up so quickly on a child.

Dr. BERNAT: In this case this girl has been in a vegetative state for somewhat under five months from trumatic brain injury. And we know that those can recover in up to a year. Or sometimes too, people will spontaneously recover awareness.

(note: the state actually sued for treatment removal ten days after Poutre’s injuries – the court fight over the removal of treatment took five months.)

Two factors that may exacerbate any early judgments to remove life-supporting treatments are the demand for organs for transplant and the increased adoption of “Donation after Cardiac Death (DCD).”

DCD is a protocol in which someone who is ventilator-dependent is taken off breathing support and usually given some sort of pain killer. In order for organs to be usable for donation, breathing and heartbeat have to cease within 30-60 minutes. It’s most often used with newly brain injured people. Not Dead Yet has been involved in stemming attempts to expand the protocol. This is all set against a very real context in which even a leading bioethicist and expert on consciousness was sounding an alarm regarding the aggressiveness of organ procurement reps in approaching families of patients recently brain-injured.

So much – for now – on organ procurement protocols – which have changed from the “brain dead” protocol most people are somewhat familiar with – although there are significant problems with “brain death” and how it’s determined.

What’s the basis for a criminal investigation into this child’s death? And why did it take four years?

From the LA Times again:

Detectives opened the case earlier this year. Denise Bertone, a veteran coroner’s investigator who specializes in child deaths, first flagged the use of fentanyl at the time of Cole’s 2013 autopsy and campaigned for years to persuade supervisors to reexamine the case. Her efforts resulted in the coroner’s office amending Cole’s death certificate in December to add fentanyl toxicity as a “significant cause” of his death.

But back in 2013, her Supervisor refused to add “fentanyl toxicity” as a cause of death or even to test fentanyl toxicity.  Recently, a new Supervisor took over for the previous one and everything changed, according to the Times:

After Fajardo left office last year, Bertone approached the then-interim chief medical examiner, Dr. Lakshmanan Sathyavagiswaran, who agreed to reopen the case. A pediatric toxicologist brought in as an expert by the coroner’s office found that the fentanyl “was responsible for the death of this patient” and that the dose was “not consistent with a therapeutic dose for the management of pain and discomfort,” according to excerpts of his findings quoted in a coroner’s report.

As a result, Sathyavagiswaran changed Cole’s death certificate in December to add fentanyl toxicity to the list of causes of death and asked for a law enforcement investigation. The manner of death — whether it was an accident or a homicide — remains listed as “undetermined” pending the outcome of the investigation.

There was another criminal investigation of a similar organ procurement in Californian. Ruben Navarro, like Cole Hartman, had developmental disabilities. One has to wonder – were their potentials for recovery written off early because they were already – as some medical professionals see disabled people – “damaged goods”?