Carrie Ann Lucas & Bill Peace Insurance Denials Inspire NDY Comment On Section 1557

August 13, 2019access to health care, Affordable Care Act, discrimination, healthcare rationing, HHS, medical neglect, Our News & Commentary Blog, public commentAffordable Care Act, public comment, Section 1557Diane Coleman

The Trump administration has proposed changes to rules against disability discrimination by healthcare providers and insurers under Section 1557 of the Affordable Care Act. While the current rules did not effectively protect Carrie Ann Lucas or Bill Peace, gutting those rules would only rob people with disabilities and others of a legal “leg to stand on” and make matters worse. Thanks to DREDF for providing electronic filing information and a template to help advocates file public comments on the proposed rule change, which are due by 11:59 pm today (August 13). Here is NDY’s comment letter.

Not Dead Yet, the Resistance

August 13, 2019

Roger Severino
Director, Office for Civil Rights
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 509F
200 Independence Avenue SW
Washington, DC 20201

RE: HHS Docket No. HHS-OCR-2019-000, RIN 0945-AA11, Comments in Response to Section 1557 NPRM

Dear Mr. Severino:

Not Dead Yet is a national disability rights organization that opposes legalizing assisted suicide and advocates to prevent health care providers, healthcare insurers and other third parties from involuntarily withholding or withdrawing life sustaining healthcare.

We appreciate this opportunity to share our views on these proposed policy changes in interpreting and enforcing the nondiscrimination provision of the Affordable Care Act (ACA). We write to express opposition to the U.S. Department of Health and Human Services (HHS) proposed rule on Section 1557. The proposed rule would cause major harm to people with disabilities and their families and communities; it’s unfair, discriminatory and bad policy for this country. We recommend HHS not finalize this regulation in whole or in part.

Section 1557 and its implementing rules are critical because people with disabilities are routinely discriminated against in the provision of health care. Too many in our society, including healthcare providers, view significant disability as a fate worse than death

At the same time, insurers too often deny essential treatments needed by people with disabilities. This year, two members of Not Dead Yet’s Board of Directors died from conditions requiring treatment that insurance refused to cover. Both were highly educated professionals who fought for the care they needed. One needed an inhaled antibiotic, the other a therapeutic bed. Both wrote publicly about the denials they faced. If these strong advocates could be denied potentially lifesaving care, how much worse will other people with disabilities fare against such deadly discrimination

HHS underwent an extensive process to develop regulations for Section 1557, including a Request for Information, proposed rule, and final rule.^[1] HHS considered more than 24,875 public comments submitted for the 2016 rule.^[2] There is no reason to reopen this rule and ignore the reasoned process HHS has already undertaken.

We request that HHS retain the current definition of a “covered entity.” The proposed rule seeks to radically narrow the scope and applicability of Section 1557, contrary to the plain meaning of the statute. Congress made clear in Section 1557 that if one part of an entity receives federal financial assistance, the entire entity should be covered. It also clearly intended Section 1557 to address discrimination in health insurance.

We disagree with HHS’ proposal to delete the current requirement that covered entities provide notice, with every significant communication to individuals, that they do not discriminate based on disability or other prohibited grounds; that they provide auxiliary aids and services for people with disabilities, including qualified interpreters and information in alternate formats; and how to obtain those auxiliary aids and services. Without the notice, members of the public will have limited means of knowing that auxiliary aids and services are available, how to request them, what to do if they face discrimination, and their right to file a complaint.

HHS should retain strong, clear language prohibiting insurance companies from discriminating on the basis of race, color, national origin, sex, age, or disability in a number of areas, including marketing plans, designing benefits, coverage claims, or imposing additional costs. These protections are especially important for people with disabilities and those with serious or chronic conditions. Eliminating this regulatory provision could result in health insurers illegally excluding important benefits, designing their prescription drug formularies in a way that limits access to medically necessary care, or cherry-picking healthier enrollees through marketing practices. It may make it harder for people who experience discrimination to enforce their rights through administrative and judicial complaints.

Last, we note that people with disabilities, like all people, have intersectional identities, and that the anti-discrimination mandate in 1557 is designed to prohibit discrimination based on a single identity as well as the intersection of two or more identities such as race and disability, age and disability, or sex and disability. The proposed rule seeks to strip protections from persons with limited English proficiency, LGBTQ individuals, and women. We stand in solidarity with other marginalized groups in objecting to this proposed rule.

Thank you for the opportunity to provide comments on the proposed rule. We urge HHS not to finalize these changes. If you have questions about our comments, please contact Diane Coleman at email: dcoleman@notdeadyet.org or telephone 708-420-0539.

Sincerely,

Diane Coleman, JD
President/CEO

^[1] U.S. Dep’t of Health & Human Servs., Request for Information Regarding Nondiscrimination in Certain Health Programs or Activities, 78 Fed. Reg. 46558 (Aug. 1, 2013); U.S. Dep’t of Health & Human Servs., Nondiscrimination in Health Programs and Activities (Notice of Proposed Rulemaking), 80 Fed. Reg. 54172 (Sept. 8, 2015); U.S. Dep’t of Health & Human Servs., Nondiscrimination on the Basis of Race, Color, National Origin, Sex, Age, or Disability in Health Programs or Activities Receiving Federal Financial Assistance and Health Programs or Activities Administered by the Department of Health and Human Services or Entities Established under Title I of the Patient Protection and Affordable Care Act, 45 C.F.R. Part 92, 81 Fed. Reg. 31376 (May 18, 2016)(hereinafter “2016 Final Rule”).

^[2] 81 Fed. Reg. 31376.

Not Dead Yet Condemns Blaming Mental Health for Mass Shootings

August 8, 2019Our News & Commentary BlogDiane Coleman

As the nation mourns and reflects on the latest mass shootings, Not Dead Yet joins other national disability rights groups in condemning President Trump and others for blaming gun violence and mass shootings on mental health.

September is suicide prevention month. Scapegoating people with mental health disabilities, especially after a crisis such as a mass shooting, only adds to the stigma and shame that keeps people who are hurting from seeking help.

Blaming mass shootings on mental health issues also puts those living with mental health conditions at risk of harm caused by discrimination, bullying and unnecessary institutionalization.

As the Bazelon Center for Mental Health Law stated this week:

Reflexively blaming gun violence on people with mental illness is unhelpful and unsupported by evidence. Less than five percent of gun violence is attributable to mental illness. Having a mental health diagnosis is not a predictor of violence, and people with serious mental illnesses are far more likely to be victims of violent crime than perpetrators of it. Casting all mass gun violence as “a mental health issue” is not only unfounded, but distracts from efforts to address the true causes of gun violence. It serves only to promote fear and prejudice against individuals with mental health needs. As the American Psychological Association’s president observed, it is important to focus on evidence-based solutions rather than “routinely blaming mass shootings on mental illness.”

The American Psychiatric Association has also issued a statement disputing the link between gun violence and mental illness. A MedPage article provided a detailed analysis and related links in Mass Shootings and Mental Illness: A Teaching Moment? – “Looking for a piece of hay in a haystack” .

We stand in solidarity with statements issued by Bazelon and other disabilities organizations:

Not Dead Yet urges an immediate stop to the misguided practice of blaming gun violence and mass shootings on mental health. Public officials who have engaged in such harmful scapegoating should promptly issue a public apology and commit to working with lawmakers to create sensible, effective gun control laws that do not discriminate against people with disabilities or other communities.

Anita Cameron: Not Dead Yet Supports the Disability Integration Act

July 13, 2019ADAPT, aid in dying, Anita Cameron, assisted suicide, congress, Disability Integration Act, legislation, Our News & Commentary BlogADAPT, aid in dying, Anita Cameron, assisted suicide, Disability Integration ActDiane Coleman

Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.

Not Dead Yet strongly supports the Disability Integration Act (HR 555 and S 117) which would give people with disabilities and seniors the civil right to receive attendant services and other supports at home, instead of in nursing facilities and other institutions.

It addresses many of the concerns of those who would feel they have no option but assisted suicide by assisting people to live, for whatever time they have, rather than assisting them to die.

The main reasons reported for people seeking the suicide drugs in Oregon were loss of autonomy, feelings of being a burden, loss of the ability to engage in activities, loss of the ability to control bodily functions and loss of dignity. These are disability issues, not just “end of life” issues. Attendant and other services and supports in one’s home are the solution to this, not doctor assisted suicide!

The Disability Integration Act would make it a requirement that insurance that pays for services in institutional settings must pay for them at home as well. For example, if one needs hospice services that are normally paid for in a hospital or nursing facility, the Disability Integration Act requires that insurance pay for people to receive that service at home. This would apply to both government and private insurance.

The Disability Integration Act would address the feelings of being a burden on one’s family by allowing people to receive services and supports they need in their own homes, thus taking pressure off of the family for the day to day care of someone deemed terminal. They can receive help to maintain independence and to do things that they enjoy so that they can keep their sense of dignity.

As assisted suicide spreads to states with diverse populations, Blacks, people of color and poor people will be increasingly vulnerable to assisted suicide due to disparities in healthcare delivery, including discrimination in prevention, treatment and pain relief.

ADAPT logo: Free Our People top, wheelchair access symbol with arms up breaking chains center, ADAPT below

The Disability Integration Act had 42 cosponsors when it was reintroduced in the House in the 116th Congress on January 15, 2019, the 90th anniversary of the birth of Rev. Dr. Martin Luther King, Jr. At this writing, there are 232 cosponsors. The bill has a majority in the House, as well as the committees and subcommittees of jurisdiction. Over 850
national, state and local civil and human rights, faith based, justice reform, housing and disability organizations support this bipartisan, bicameral legislation. The bill has more than the 218 required cosponsors in the House, per the rules set forth by House Speaker, Nancy Pelosi.

Despite this, the Disability Integration Act has been blocked by Rep. Frank Pallone (D-NJ), Chair of the Energy and Commerce Committee. Neither he, nor his staff will give ADAPT a clear reason why he is doing this.

Please call your representative and ask that they support the Disability Integration Act. If they are already cosponsors, ask that they contact Rep. Pallone and ask for a hearing. The freedom and liberty of disabled people of all ages hangs in the balance.

For more information about the Disability Integration Act, visit www.disabilityintegrationact.org.

Lisa Blumberg: Assisted Suicide California Style

July 8, 2019"death with dignity", aid in dying, assisted suicide, california, Lisa Blumberg, Our News & Commentary Blogaid in dying, assisted suicide, California, death with dignity, Lisa BlumbergDiane Coleman

John L’Heureux was a prolific writer and former Stanford professor who died April 22nd in California. His wife, Joan L’Heureux, initially told the New York Times that the cause was complications of Parkinson’s disease (1). Within a few days, though, the New Yorker published an essay by L’Heureux on why he would die by assisted suicide (2).

The piece, which was somewhat unimaginatively entitled “On Death and Dignity”, may have omitted salient facts. It is conceivable that he may have mischaracterized his wife’s stance. I have even considered the possibility that it was a hoax – one of L’Heureux’s more bizarre bits of fiction – but that seems unlikely since he did die when he said he planned to. The bottom line is that if L’Heureux’s death went down as he recounted, it is almost a textbook study on how these laws in and of themselves encourage suicide.

L’Heureux seems to have been a suggestible guy. He started college intent on becoming an actor but then his roommate out of nowhere said, “Why don’t you become a priest. You’re smart enough.” (3) L’Heureux became a Jesuit priest.

Some years later, he left the priesthood – not because he had problems with doctrine or with the Jesuits – but because he felt it was too hard to be the type of priest he wanted to be. Shortly thereafter, he married Joan, a former nun (4).

When L’Heureux acquired Parkinson’s disease (PD) as an older man, he was understandably concerned because his father had PD and ended up with cognitive decline and in a nursing home, fates that L’Heureux deemed inevitable. He referred to himself and his father as “parkies”. Yet, his literary career flourished. He continued to write novels and his short fiction appeared regularly in the New Yorker which he took as reassurance that he “was still compos mentis.” He obtained a contract to publish his new and selected stories as a collection subtitled “And Maketh Many Wild Leaps.” L’Heureux said that “my heart indeed made many wild leaps.” (5)

This all sounds like things were pretty good. Yet L’Heureux wrote that after another of his works was published, “I first looked into California’s death-with-dignity law. I found it hard to believe that the state was sanctioning a kind of suicide. Suicide? No, death with dignity.” (6) His focus on the law (which arguably did not even apply to him), the state and buzz words is telling. At another point in his essay, he said he was invoking the law as “justification” for his suicide. My guess is that the law whispered to him suggestively. Instead of “why don’t you become a priest”, it was “why don’t you kill yourself?”

L’Heureux discussed things with Joan and “we came to agree that, in this case, death sooner was better than death delayed.” (7) He did not say that Joan accepted or became resigned to his decision. Instead, they both agreed, he should die. Perhaps you could call it a unilateral suicide pact.

Next came a talk between L’Heureux and his doctor. “I reviewed for him my progress—I liked the irony of the term—from my half-assed stumbling walk to reliance on a cane, and then that sobering moment when I was forced to use a walker. That was where I was now. Next would come the wheelchair…” (8) The doctor told him that he still had enough brain matter to be of sound mind. L’Heureux took this as a compliment, although the practical effect of what the doctor said was that the doctor was not going to request a mental health evaluation.

“Thus my suicide began,” L’Heureux wrote dramatically. “Three home visits by two doctors—my primary physician and my neurologist—officially established my decision to die with dignity… I signed a formal document attesting to my decision, and it was co-signed and witnessed, according to the law.” (9) L’Heureux received his lethal prescription.

What’s wrong with this picture?

The main criteria of California’s assisted suicide law is that a person have a terminal illness which will, within reasonable medical judgment, result in death within six months. Yet, there is no mention in L’Heureux’s essay of his being at all close to death. He was just seemingly a man with a slowly progressive condition who like many people his age – he was 82 – used a walker and had some anxiety about the future. However, there is no clear mechanism in the law for enforcing the requirement that doctors determine that a person be in the end stage of an illness. It is sort of the honor system.

There is also the requirement that a person’s request must not arise from the undue influence of another. However, the doctor must only ascertain if the person “is feeling” unduly influenced. A person who is being influenced may not be aware of it. That is the nature of influence.

It is chilling to read of L’Heureux’s belief – a belief that apparently went unchallenged – that his suicide was “an agreed – upon act of love.” (10)

Many studies have established that people with PD have a higher suicidal ideation rate than the general population. In one study, suicidal ideation was present in 31% of participants with PD, compared with 16% of patients with psoriasis, and 2% of healthy controls. The authors recommended that “clinical assessment of PD patients should include a psychiatric evaluation investigating suicidal ideation and perceived disability”. (11) As with other groups, suicide among people with PD is a preventable tragedy.

Once L’Heureux had his lethal prescription, he and Joan discussed the date for what he called the Event. “Given the strain that all of this put on us…we chose sooner, rather than later. April 22nd, three weeks away.”

John L’Heureux died on that date. There may not have been anyone around with enough sway with him to suggest otherwise.

Footnotes

Massachusetts Legislative Briefing On Assisted Suicide Presents Strong Message

July 3, 2019"death with dignity", aid in dying, Anita Cameron, assisted suicide, john kelly, Massachusetts, Our News & Commentary Blogaid in dying, Anita, assisted suicide, John Kelly, MassachusettsDiane Coleman

Fresh off their strong showing at the June 25 committee hearing on assisted suicide bill H.1926, disability rights advocates were featured in a Statehouse legislative briefing hosted by Rep. Denise Provost (D-Somerville). A few photos from the well attended briefing were posted here last week. Rep. Provost titled the talks “What Could Possibly Go Wrong? Hear What Opponents Have to Say.”

Anita Cameron, Not Dead Yet Director of Minority Outreach, introduced herself as someone with “multiple disabilities, two of which are degenerative, and one which will take my life.”

She said our “inherently racist” healthcare system delivers inferior care to BIPOC (Black, Indigenous and People Of Color), who experience worse outcomes “with heart conditions, diabetes, cancer, and chronic pain.” Disabled BIPOC received even worse treatment.

“As a Black Latina,” she said, “I could never wrap my head around the assisted suicide phenomenon. I thought that it was some odd thing that privileged White people were into. “

(This quote was picked up by the Cape Cod Times from Anita’s testimony at the committee hearing 2 days earlier.)

Anita told the amazing story of her mother, whom doctors pronounced imminently dying 10 years earlier. Anita’s mom moved back to Colorado to die, but instead revived and is now planning to increase her mobility with knee replacement surgery.

Anita summarized: “Because of the racist nature of our health care system and the tendency of doctors to devalue the lives of disabled and people of color, assisted suicide has no place as an option in Massachusetts.”

John Kelly, Not Dead Yet New England Regional Director, backed up Anita’s talk with slides showing the geographic and class divide evident in the voting patterns for the 2012 ballot question on assisted suicide. Wealthier and whiter parts of the state, such as in Western Mass and Newton, voted strongly yes, while more working class communities, whether majority Latino and black like Lawrence and Springfield, or white like Gardner and Taunton, voted heavily against.

John, who is also the Director of Second Thoughts MA, emphasized that patients under assisted suicide programs are disabled and are reported as desiring death precisely because of their “existential distress” about depending on other people for activities of daily living, which made them feel undignified and like a burden.

John then explained how assisted suicide is like a death penalty, which progressives overall oppose because of the estimated 4% of innocent people sentenced to death. With assisted suicide laws, at least 12%-15% of people who enter six-month hospice will outlive the program. Non-dying people will inevitably get pushed towards death, first by doctor’s mistakes, second by insurance greed, and third by intimate abuse and violence.

Oregonian Jeanette Hall serves as an example of the first group. When Jeanette was diagnosed terminal, she sought assisted suicide, only to be persuaded by her doctor to try more treatment. Alive 19 years later, Jeanette urged Massachusetts in a 2011 letter to the Boston Globe not to make Oregon’s mistake by passing an assisted suicide bill.

A second group of people will get herded toward death because of finances, whether by denial of treatment by insurance companies, or the inability to pay; and a third group will pay the ultimate penalty because of persuasion and bullying, the shame of feeling like a burden, and straight up murder for gain.

John also corrected the falsehood continually pushed by assisted suicide proponents that there have been no abuses in Oregon. He referred to 16 pages of problems included in attendees’ packet of materials, and highlighted the case of Wendy Melcher, whose killers received a tap on the wrist from the Oregon nursing board and no involvement from civil authorities.

Peer Specialist Brian Shea represented M-POWER, a grassroots group of people with lived experience of mental health diagnoses, trauma, and addiction. As someone who has experienced deep depression, Brian described the choice of getting on a bus or driving his wheelchair in front of it. He said that the law’s required mental health consultation would be easy to game by pretending for 50 minutes not to be depressed. There would be no way to remedy mistakes, as the state would descend into “barbarism” by throwing away some of its least valued residents.

Palliative care physician Laura Petrillo, who when living in California had strongly opposed its assisted suicide bill, emphasized that palliative care can control people’s pain and help guide them through a process full of meaning and connection. Laura responded to audience questions about “pain and suffering” with the tenets of palliative care and a call for state expansion of palliative care training.

Rep. Provost began the briefing by inviting Boston University law professor George Annas to discuss the strong role that “substituted judgment” plays in Massachusetts treatment decisions for incapable residents. Once death by assisted suicide is understood as a “benefit,” it will be extended to people who – if they were capable – would reasonably be thought to choose death over treatment.

And a big thanks to disability advocates John Robinson, Don Summerfield, Sandy Durmaskin, and David Rolde, who came out in support of the briefing, and to Patients Rights Action Fund Executive Director Matt Valliere, who helped manage logistics and coordinate speakers at the hearing and a press conference on June 25.

— John Kelly