Anita Cameron: How Many More Have To Die In Nursing Facilities In the Age of COVID-19?

Anita Cameron

COVID-19 continues to rage through America, but not many of us outside the media and disability rights and justice groups are talking about an overlooked population – residents of nursing facilities and institutions for disabled people, who are dying of COVID-19.

To date, more than 51,000 residents and employees of nursing homes and long-term care facilities have died. That’s more than 40 percent of the total death toll in the United States. These are only the numbers they tell us.

In April, 17 deceased people were discovered in a morgue in a facility in Andover, NJ, after authorities received a tip. Those 17 were among 68 recent deaths at the facility, Andover Subacute and Rehabilitation Center I and II. Two nurses also died. Of those who died, 26 people had tested positive for the virus. People are still dying in that facility.

A high school friend, whose relative died in May in a Georgia nursing home, was told that 142 people contracted COVID-19 in that facility. 100, including her relative, died.

These are the numbers we know. What of the numbers we don’t know? And what’s being done to protect residents and staff?

Because relatives and loved ones in nursing facilities have been denied visitors due to COVID-19,  it’s almost impossible to find out what’s happening. Family members sometimes learn well after the fact that their loved one has died.

Nursing homes want immunity from civil suits when their residents die of COVID-19, and several states, including New York, have given it, making it impossible to investigate violations and neglect, or pursue justice when people have died.

So, what, if anything, is being done to help and protect folks in nursing facilities, institutions and other congregate facilities?

Disability justice activists and independent living centers have been working on ways to safely transition folks to community settings. Chicago ADAPT, along with other local disability organizations, had a meeting with Illinois State administrators and department heads on emergency evacuations, or relocations. Some of their demands on transition were:

I. TRANSITIONS

Governor Pritzker to implement an executive order to:

1) Transition facility residents to hotels/temporary independent housing that is less likely to put residents and workers at risk of infection

2) Reassign overflow nurses to these non‐institutional settings rather than to institutions
Governor Pritzker to reinforce the Colbert/Williams [Olmstead class action] Decrees by:

• Utilizing the Strike Force to expedite the decrees
• Establishing a consumer-led body to work with the Strike Force on transitions to provide essential input
• State of Illinois to require that MCOs [managed care organization] provide community-based consumers the same or broader waivers as those provided to institutional settings

Peter Grosz, of Chicago ADAPT, says that while Pritzker’s staff seemed sympathetic at the meeting, they received this response on May 21st. Note, this is the response regarding transitions, not the entire response to all of their demands, which overall, were unhelpful.

“While the Olmstead Decrees continue to remain a priority for the entire Administration, we have assessed that IDHS and its service providers are unable to conduct safe transitions while providing the typical, robust level of community-based supports during this pandemic. IDHS will continue to work tirelessly to plan around this pandemic in the interest of Class Members, including providing virtual services.

“IDHS also remains committed to ensuring that Class Members, regardless of where
they are currently residing, maintain their status in Consent Decree programming and access to the same entitlements. IDHS is preparing for a complete re-vamping of the service delivery system for Class Members for the time it becomes safe to facilitate transitions.”

“As you know, people in institutions are no different from people not in institutions except that they are in institutions,” said Peter Grosz. “Illinois has not hesitated to transition homeless and front-line workers to temporary facilities equipped with nurses and other supports. In the eyes of the state, the label alone of nursing home resident or psych facility resident or prisoner diminishes an individual’s rights to appropriate safeguards and services against all form of injustices and natural disasters, including at this time, pandemics.”

Members of ADAPT participated in a townhall meeting with other disabled stakeholders in response to COVID-19 in nursing facilities. Anaya Robinson, of Atlantis Community, an independent living center in Denver, Colorado, detailed their plan of relocating people to a local hotel and pairing them with attendants who would quarantine with them. Atlantis Community is hiring currently homeless individuals who receive attendant services training while quarantined with the former nursing home resident, and housing when that person is then transitioned into their own place. Misty Dion, of Roads to Freedom Center for Independent Living, in Williamsport, Pennsylvania, cited a similar program of emergency relocation. They’ve teamed up with restaurants to provide free meals to those in their program. The Center for Disability Rights, in Rochester, New York, has a relocation program quite similar to Denver’s; they train homeless folks in attendant services training through their consumer directed attendant services program, while they quarantine in a local hotel with their supervisors [individuals needing consumer-directed services].

I spoke with three individuals in a Chicago nursing home, Lyndsay, Ernest, and Gina. Their facility has 15 people who tested positive for COVID-19. I wanted to know how they felt about living there during this pandemic.

“It’s very scary, like a time bomb” said Ernest. “They aren’t telling us anything. Its like we’re in a dark room. We have 15 cases of COVID-19 here, but they only told us about 4 people. We’ve been quarantined here for 4 months, but every day, they’re bringing in new staff from the outside. Some of them wear masks, some of them don’t.”

“We have become each other’s support,” said Gina. “The nurses they bring in don’t have the training to do stuff we need, like wound care, so we help each other. There’s been 4 doctors here since January, actually, 3 doctors and a physician’s assistant. I saw a doctor two weeks ago. He just stuck his head in the door to say hi. That’s all.”

“My transition person disappeared,” said Lyndsay. “She said she couldn’t do this anymore. I’m trying to find out what I can do. This is a matter of life and death now, with COVID-19. My transition has just stopped and nobody’s doing anything. I’m waiting for housing and nobody’s telling me anything.”

Therein lies another issue. People’s Olmstead rights are being violated. Olmstead v LC is the Supreme Court decision affirming the right of people in nursing facilities and other institutions, like psychiatric hospitals, to live in the community with the services and supports they need to remain independent. According to the decision, “Unnecessary institutionalization is discrimination under the Americans with Disabilities Act.” Each state is supposed to have an Olmstead plan to transition folks from institutions to their own homes and receive services “in the most integrated setting possible.”

While governmental agencies are saying that people in nursing homes are too medically fragile to be transitioned to the community, many disabled folks reject that claim. Today, on the 21st anniversary of the Olmstead decision, they are still fighting  for the right to live at home. You would think with COVID-19 on the rampage in nursing facilities, there would be concerted efforts nationwide to get people out of those places, to safety, then into their own homes. How many more people in nursing homes and other institutions for disabled folks have to get sick and/or die from COVID-19 before we do anything?

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Anita Cameron: How Many More Have To Die In Nursing Facilities In the Age of COVID-19?

ADAPT Demands the FDA to Stop Shocking Disabled People into Submission

03/09/18 – FOR IMMEDIATE RELEASE – ACTION HAPPENING NOW

For More Information:

Mike Oxford: (785) 224-3865

Cal Montgomery: (312) 813-6816 (text only)

Priya Penner: (585) 944-3086

Marilee Adamski-Smith: (715) 204-4152

WHO: National ADAPT

WHAT: ADAPT Demands the FDA to Stop Shocking Disabled People into Submission

WHERE: In front of FDA Director Scott Gottlieb’s house, Pennsylvania Ave NW & L St NW, Washington
DC 20037

WHEN: Friday, March 9, 2018, happening now

DISABILITY RIGHTS GROUP DEMANDS THE FDA ISSUE LONG-DELAYED REGULATIONS

03/09/2018 – Washington, D.C. Members of the national disability rights group ADAPT are outside the home of FDA Director Scott Gottlieb demanding that he release the regulations that would immediately end the use of an electric shock device to control disabled children and adults at the Judge Rotenberg Center (JRC) in Canton, Massachusetts. “The FDA wrote the regulations to stop this in 2016, but has delayed them,” said Rhoda Gibson, an organizer with the Massachusetts ADAPT chapter. “Disabled Americans are tortured in my state every day with Gottlieb’s blessing.”

ADAPT and other disability led organizations have been calling for an end to JRC’s use of this device for years now. The group went and protested the facility in 2016 and then went to the FDA last spring. They are now at Gottlieb’s house because they feel the FDA has dragged their feet for too long and needs to release the regulations immediately. “Disabled people are being tortured there every day. This has gone on long enough. The federal government needs to stop looking the other way and do something about this” said Priya Penner of Rochester New York.

Numerous news outlets have covered the torture that goes on at the Judge Rotenberg Center including Fox UnderCover, ABC Nightline and Anderson Cooper. In 2012 Fox UnderCover exposed the video of Andre McCollins being tortured at JRC for over 7 hours and shocked 31 times. JRC tried to keep this video under wraps for over 8 years but Fox Undercover’s story exposed the cruelty of the practice to the American public. The torture still continues to this today.

While ADAPT has long opposed all institutions they hold a special contempt for the Rotenberg Center because of their use of electro shock devices. “The JRC has a bigger system of abusive violence and coercion, but the shock is the worst thing they do. This shock is specifically designed to be more painful than a police taser,” said organizer Marilee Adamski-Smith with the Central Wisconsin ADAPT Chapter. Adamski-Smith pointed to survivor Jennifer Msumba’s statements about wanting to die when she was shocked.

Activists argue that rather than torture used at the JRC, more supports are needed to assist people living in the community. “Those supports work,” said Cal Montgomery, an organizer with the Chicago ADAPT. “Gentle, trauma-informed approaches that give people control over their own lives result in even people with histories of violence and self-injury living happy, healthy lives. Pain and fear may suppress dangerous behavior in the short term, but they make the underlying problems worse.”

For decades ADAPT has struggled to secure for disabled Americans the same rights and liberties enjoyed by their nondisabled neighbors. Learn more about ADAPT’s history and activities at www.adapt.org, on social media with the NationalADAPT Facebook page and on the @NationalADAPT Twitter, and under the hashtag #ADAPTandRESIST. You can also follow the fight against the JRC shock device at www.adapt.org/jrc and #StopTheShock.

Full Article & Source:
ADAPT Demands the FDA to Stop Shocking Disabled People into Submission

Three years later, this terminally ill man is glad he rejected assisted suicide

Washington D.C., Oct 4, 2017 / 03:01 am (CNA/EWTN News).- Three years ago, J.J. Hanson received a diagnosis that no one wants to hear. He had terminal brain cancer, and doctors said his time was short – he likely had about four months to live.

“The surgeon said my cancer was inoperable and three different doctors told me there was nothing they could do,” Hanson said.

He was diagnosed with glioblastoma, the same type of brain cancer that led Brittany Maynard to choose to take her life through assisted suicide in a high-profile case in California in 2014.

“I would have easily met the criteria for accessing assisted suicide if I lived in a state like Oregon or California, where assisted suicide is legal,” Hanson said.

“In a dark moment, I might have opted for it, but I am fortunate to have a supportive family, and was given the opportunity to pursue cutting edge, experimental treatment instead,” he said. “Here I am three years later, enjoying the arrival of our second son and living life to the fullest.”

Today, Hanson is president of the Patients Rights Action Fund, which opposes efforts to legalize assisted suicide. The group is currently backing a Congressional resolution objecting to assisted suicide on the grounds that it puts all people at risk.

“When assisted suicide becomes accepted public policy it threatens the lives of everyone, especially the poor, elderly, mentally ill, disabled, and terminally ill,” he said. “Why? Well, for starters, abuse is unavoidable and doctors are fallible. Assisted suicide policy also injects government insurers and private insurance companies with financial incentives into every single person’s end of life decisions.”

House Congressional Resolution 80, proposed by Rep. Brad Wenstrup (R-Ohio) on Sept. 26, has nine co-sponsors from both parties. Besides Hanson’s group, other supporting groups includes the National Council on Independent Living, the Disability Rights Education & Defense Fund, Not Dead Yet, ADAPT, and Physicians for Compassionate Care Education Fund.

Rep. Wenstrup and the resolution’s sponsors said doctor-assisted suicide “undermines a key safeguard that protects our nation’s most vulnerable citizens, including the elderly, people with disabilities, and people experiencing psychiatric diagnoses. Americans deserve better.”

“When governments support, encourage, or facilitate suicide – whether assisted by physicians or others – we devalue our fellow citizens, our fellow human beings,” the legislators said. “That should not be who we are.”

The proposed resolution says that assisted suicide “puts everyone, including those most vulnerable, at risk of deadly harm and undermines the integrity of the health care system.” It notes that the purported “safeguards” limit the laws to patients with a prognosis of six months or less to live, but such people “outlive their prognoses every day.”

The federal government “should ensure that every person facing the end of their life has access to the best quality and comprehensive medical care,” including palliative or hospice care, says the resolution. It says the federal government “should not adopt or endorse policies or practices that support, encourage, or facilitate suicide or assisted suicide, whether by physicians or others.”

States with legal assisted suicide have come under criticism for lacking adequate safeguards to protect those who are depressed or pressured into requesting assisted suicide. Reporting standards for assisted suicide are substandard, according to the resolution. It also objects that some states require physicians to conceal assisted suicide and to list the cause of death as the underlying condition.

It adds that the low cost of lethal medication will make it more likely to be recommended to disadvantaged and vulnerable people.

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Three years later, this terminally ill man is glad he rejected assisted suicide