NDY Urges USCIS To Reverse Policies That Kill Ill and Disabled Immigrant Children

access to health care, death through denial, Our News & Commentary Blog,

Not Dead Yet, the Resistance

NDY Urges USCIS To Reverse Policies That Kill Ill and Disabled Immigrant Children

Last month, U.S. officials took another step against immigrant people by ending adjudication of “deferred action” requests. These requests temporarily prevent the deportation of vulnerable individuals and families who face compelling, and often life-threatening, circumstances. Many applicants for deferred action are children with severe medical conditions like cancer, cystic fibrosis, and epilepsy. These policies also especially target Black and Brown immigrant children.

U.S. Citizenship and Immigration Services (USCIS) is an agency of the U.S. Department of Homeland Security that administers the country’s naturalization and immigration system. As of August 7, 2019, USCIS is no longer accepting or addressing non-military deferred action requests received at field offices after that date.

As the American Immigration Lawyers Association has explained:

  • This change could result in many children’s deportation to countries in which they would lack access to essential medical treatment—treatment that makes the difference between life and death.
  • Other vulnerable individuals precluded from deferred action due to this change could face long-term or permanent separation from loved ones, making this measure a de facto family separation policy.
  • Indeed, USCIS’s shift in policy could compel families made up of noncitizen parents and sick U.S. citizen children to choose either: (1) family separation; or (2) family unity in countries lacking vital medical care— effectively, a choice between family separation and death.

Under public pressure, USCIS announced that it would re-open denied deferred action requests that were already pending as of August 7, but that is simply not enough to protect many of the lives at risk going forward. The only solution is to fully restore USICS’s deferred action adjudications.

USCIS changed its policy without any advance public notice, endangering terminally ill kids whose lives hang in the balance and other vulnerable individuals who must face the prospect of being separated from loved ones. This is worse than unacceptable – it is nothing short of horrific!

Not Dead Yet is a national disability rights group with sister organizations in Canada, the United Kingdom and New Zealand. We oppose the legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. These USCIS policies show similar contempt for the value of our lives, and must be reversed.

[This Statement was submitted to the House Subcommittee on Civil Rights and Civil Liberties which  will hold a hearing entitled “The Administration’s Apparent Revocation of Medical Deferred Action for Critically Ill Children” at 12PM on Wednesday, September 11, 2019.]

NDY insta a USCIS a revertir las políticas que matan a niños inmigrantes enfermos y con discapacidad

access to health care, death through denial, Our News & Commentary Blog,

Not Dead Yet, the Resistance

NDY insta a USCIS a revertir las políticas que matan a niños inmigrantes enfermos y con discapacidad

El mes pasado, los funcionarios estadounidenses dieron otro paso contra las personas inmigrantes al finalizar la adjudicación de las solicitudes de “acción diferida”. Estas solicitudes evitan temporalmente la deportación de individuos y familias vulnerables que enfrentan circunstancias convincentes, y a menudo potencialmente mortales. Muchos solicitantes de acción diferida son niños con afecciones médicas graves como cáncer, fibrosis quística y epilepsia. Estas políticas también se dirigen especialmente a los niños inmigrantes negros y mestizos.

El Servicio de Ciudadanía e Inmigración de EE. UU. (USCIS) es una agencia del Departamento de Seguridad Nacional de EE. UU. Que administra el sistema de naturalización e inmigración del país. A partir del 7 de agosto de 2019, USCIS ya no acepta ni atiende solicitudes de acción diferida no militar recibidas en las oficinas de campo después de esa fecha.

Como explicó la Asociación Americana de Abogados de Inmigración:

  • Este cambio podría resultar en la deportación de muchos niños a países en los que no tendrían acceso a un tratamiento médico esencial, un tratamiento que marca la diferencia entre la vida y la muerte.
  • Otros individuos vulnerables excluidos de la acción diferida debido a este cambio podrían enfrentar una separación a largo plazo o permanente de sus seres queridos, lo que hace que esta medida sea una política de separación familiar de facto.
  • De hecho, el cambio en la política de USCIS podría obligar a las familias formadas por padres no ciudadanos y niños enfermos de ciudadanos estadounidenses a elegir: (1) separación familiar; o (2) unidad familiar en países que carecen de atención médica vital, efectivamente, una elección entre la separación familiar y la muerte.

Bajo presión pública, el USCIS anunció que volvería a abrir solicitudes de acción diferida denegadas que ya estaban pendientes al 7 de agosto, pero eso simplemente no es suficiente para proteger muchas de las vidas en riesgo en el futuro. La única solución es restaurar completamente las adjudicaciones de acción diferida de USICS.

USCIS cambió su política sin previo aviso público, poniendo en peligro a los niños con enfermedades terminales cuyas vidas están en juego y otras personas vulnerables que deben enfrentar la posibilidad de ser separados de sus seres queridos. Esto es peor que inaceptable: ¡es horrible!

Not Dead Yet es un grupo nacional de derechos de discapacidad con organizaciones hermanas en Canadá, el Reino Unido y Nueva Zelanda. Nos oponemos a la legalización del suicidio asistido y la eutanasia como formas mortales de discriminación contra las personas mayores, enfermas y con discapacidad. Estas políticas de USCIS muestran un desprecio similar por el valor de nuestras vidas y deben revertirse.

Lydia Nunez Landry and Germaine Martin Join NDY Board of Directors

Germaine Martin, Lydia Nunez Landry, Our News & Commentary Blog

Not Dead Yet is pleased to announce that Lydia Nunez Landry and Germaine Martin have joined our Board of Directors. Ms. Martin lived in a nursing facility in Ohio and successfully advocated to free herself. Ms. Landry has served as a nursing facility ombudsperson in Texas. Both women have assisted others dealing with abuse and unwanted confinement in these institutions. “We’re honored that these two women have agreed to serve on our board and provide their insights and perspectives on the real concerns facing so many people with disabilities, advanced chronic conditions and terminal illnesses,” said Diane Coleman, President and CEO.

Lydia Nunez Landry, a dark haired light-skinned woman with glasses, wearing a black blouse, black and white sweater, and a multicolored skirt, seated in a wheelchair with the backrest draped in purple.

Lydia Nunez Landry is a disability rights advocate living in Houston, Texas. Her advocacy work centers on the rights and safety of institutionalized disabled and older people. Serving as a certified volunteer long-term care ombudsman, Lydia is witness to the often devastating effects caused by segregation in nursing homes. Lydia graduated magna cum laude from University of Houston-Clear Lake with a degree in social work—her activism draws on years of study in disability, critical race, queer, and feminist theories and how they relate in various ways to economic inequality. As a disabled mother of two, Lydia champions the rights of disabled parents and those who want to be parents. She is also a member of ADAPT, assisting with social media outreach, disability rights education, and political action in the Houston area. Lydia was born and raised in rural Louisiana along the Gulf Coast and volunteered in various capacities after hurricanes Katrina, Rita, Ike, and Harvey, most recently by helping to coordinate rescues and the delivery of vital medicine, food, and water to those stranded by encroaching waters.

Germaine Martin, an African American non-binary female with short curly black hair, smiling at the camera, and wearing a bright pink shirt with a collar and four horizontal black stripes.

Germaine Martin is a Black non-binary female lesbian and has multiple disabilities. She has a BA in political science, and minored in mathematics. She started the first Disabled Student Union at Wright State University, and was involved in student government. She also served as Vice President on the council of her apartment building at Wright State. Germaine taught computer skills to people with disabilities at United Rehabilitation. She was later trapped in a nursing home for four years and fought to get herself out till she succeeded. She has continued to fight for home and community based services and assist others to get out of institutional settings.

We welcome both of these great disability advocates to the Not Dead Yet Board!

 

Does Freedom to Die Mean Freedom to Save Money, for Shareholders?

"death with dignity", "The Unspoken Argument", aid in dying, assisted suicide, center for disability rights, Compassion & Choices, diane coleman, letters to the editor, New York, Our News & Commentary Blog, Stephanie Woodward, ,

[Letter to the editor of the Putnam County News and Recorder published September 04, 2019]

To the Editor, In response to Assemblywoman Galef’s letter (“Support the Medical Aid in Dying Act”, PCNR, Aug. 28, 2019), we should not forget what Derek Humphry, co-founder of the Hemlock Society (now “Compassion & Choices) said in his book:

“…economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.” Derek Humphry & Mary Clement, Freedom to Die: People, Politics and the Right to Die Movement” (2000).

With New York State’s plan to cut in-home services for seniors and people with disabilities well underway, we should all be worried that those words are coming true.

But it’s not too late to have second thoughts about a public policy of assisted suicide that’s administered by healthcare providers run by managed care companies that owe their first duty to shareholders, not patients.

Diane Coleman, President of Not Dead Yet.

Meghan Parker, New York Assn. on Independent Living.

Stephanie Woodward, Center for Disability Rights.

On Being Offered the “Choice” of a Nursing Facility or a Grave

assisted suicide, Canada, euthanasia, Our News & Commentary Blog, Toujours Vivant-Not Dead Yet

A 40-year-old man with ALS died for lack of sufficient in-home care on August 9th. He qualified for some in-home services, but needed more as his disease progressed. He was only offered a nursing facility over 4 hours from his family. For him, that was a fate worse than death — not the ALS, but the isolation of a nursing facility. Since he lived in Canada, he was eligible for a lethal injection under Canada’s euthanasia law.

Here’s a summary of Sean Tagert’s story by our Canadian sister organization, Toujour Vivant/Not Dead Yet:

SEAN TAGERT DIES FOR LACK OF HOME CARE

  • Sean Tagert was a 40-year-old man with ALS living in British Columbia. He needed 24-hour in-home assistance in order to live independently. Local health authorities would only cover 20 hours of care per day, and suggested that Mr. Tagert move into long-term care if he needed more. The only available facility was in Vancouver, 4.5 hours’ drive from Mr. Tagert’s Powell River home and family.  He refused, saying death was preferable to the isolation of institutional life and being far away from his son. After relying on aging relatives to fill gaps in his care over a few weeks, Mr. Tagert died by euthanasia on August 9th.
  • This is exactly what we feared would happen when Bill C-14 was introduced. Although news reports have said that Mr. Tagert “chose” to end his life, it was not what he truly wanted. He made it clear that death would be an escape from difficult circumstances. Dr. Leonie Herx, a palliative care physician from Toronto, called for “a public outcry around peoples’ right to access care, to support them in choosing … life rather than just a right to death. A person should have the resources provided to live at least in their community, not to have to move … to another city.”

Here’s another story about Mr. Tagert in the press. But don’t think that people with ALS don’t face the same pressures to die in the U.S. In spite of decades of advocacy by aging and disability advocates, the U.S. is still stingy with in-home long term care services and is all too ready to shuttle people off to nursing facilities.  As TV/NDY noted in its webcast:

  • Mr. Tagert’s situation is similar to several [U.S.] legal cases that were brought in the 1980s where people with spinal cord injuries who were stuck in nursing homes won the right to have respirators turned off.  These rulings, sometimes referred to as the “Give me liberty or give me death” cases, resulted in the deaths of David Rivlin and Kenneth Bergstedt. Larry McAfee, who won a similar case, was contacted by disabled activists from a Georgia independent living center, who helped him obtain funding for personal care attendants and move into an apartment.  The families of Rivlin and Bergstedt rejected approaches from the disability community.

Eight percent of those who have died by assisted suicide in Oregon had ALS, according to the official state reports, the highest percentage category after cancer. Of course, Oregon doesn’t collect much data, so we don’t know for sure about the in-home care situation for these individuals, except that the number one reason for requesting assisted suicide is reported as “loss of autonomy” (91%) and and the 5th reason is “burden on family, friends/caregivers” (45%). These reasons scream about a lack of consumer controlled in-home personal assistance services.

So there’s no logic to splitting hairs between Canada and the U.S. Whichever country we live in, people who need in-home services have every reason to worry about being given the “choice” of a nursing facility or a grave.