[Editor’s note: For a pdf formatted version of this press release, including photos of Anita and “Sam”, go here.]
As the 2014 new year begins, Anita Cameron and Samantha Crane join the Not Dead Yet Board of Directors. The Board consists of ten members from across the United States and two from Canada.
Cameron is a long time disability rights activist who serves in the leadership of the direct action group ADAPT. She was invited to the White House on two occasions, has met three sitting U.S. Presidents and two Vice-Presidents, helped to organize a national disability rights march to Washington, D.C. Cameron became the first visually impaired instructor with the Community Emergency Response Team (CERT) for the State of Colorado in 2012, and in 2013, became a CERT Program Manager for the State.
Recently, Cameron commented on a public education initiative involving both ADAPT and Not Dead Yet. “I love the fact that ADAPT and NDY have collaborated on an ad on the CBS Super Screen in New York City’s Times Square,” Cameron said. “This ad could have a crucial part in changing the way people with severe disabilities are seen by the public. I’m excited that through it, millions of people will begin to learn that life with disabilities is wonderful, that we are better off and more productive and engaged when we are in our own homes rather than institutional settings, and that our community is fighting for liberty and justice for all and invites the broader public to join us in this fight.”
Crane is a 2009 graduate of Harvard Law School and currently works as Director of Public Policy at the Autistic Self Advocacy Network’s national office. She previously served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. L.C., and as an associate at the litigation firm Quinn Emanuel Urquhart, & Sullivan, L.L.P., where she focused on patent and securities litigation. From 2009 to 2010, Samantha served as law clerk to the Honorable Judge William H. Yohn at the U.S. District Court for the Eastern District of Virginia.
During law school Crane also interned at the Civil Rights Division of the U.S. Department of Justice, where she worked in the Disability Rights Section. She also interned at the American Bar Association’s Commission on Mental and Physical Disability, the Disability Law Center of Massachusetts and Harvard Law School’s clinical programs in special education and in disability and estate planning.
“Not Dead Yet and ASAN have, in the past, partnered together to fight the deadly perception that the lives of people with developmental disabilities are not worth living,” said Crane. “In many cases, this has led to denial of lifesaving medical care and even murder by caregivers. By joining the Not Dead Yet Board, I hope to continue and strengthen Not Dead Yet’s partnership with the developmental disability community to ensure that disabled people’s lives are valued.”
“Sam and Anita bring tremendous strengths as well as diverse backgrounds and skills to the NDY Board,” said Diane Coleman, founder and CEO of the organization. “I’m very excited about working with them more closely in the years ahead, and know that their fellow Board members share my enthusiasm as we pursue our goals in 2014.”
How wonderful that you have these two new members who will strengthen your position and your goal to protect the disabled from discrimination, both as to “quality of life” matters and as to covert/overt (default) unilateral DNR Status that is a direct response of
Big Hospitals to reimbursement protocols of CMS and the private insurance industry.
These reimbursement protocols have produced a disparate discrimination that probably is illegal under most state laws and the 1991 Patient Self Determination Act when there is no informed consent by the elderly/disabled patient to the hastening of death with the covert/overt(default) DNR Code Status in the medical charts of the elderly/disabled on Medicare — and these withheld treatments are NOT deemed “medically futile” under some due-process procedure approved by the state (such as TADA)..
However, the state laws on the books since 1991 when the Patient Self Determination Act was passed by the Congress concerning unilateral DNRs and lack of informed consent that imply that the unilateral DNR is a crime have not been tested in the courts since 1991 because, of course, the bioethicists have encouraged and protected non beneficial over treatment of patients since the 1991 PSDA was passed into law. They are paid up to the Diagnosis Related Group Cap by Medicare no matter the age and co-morbidities of the patients.
Since 1991, The bioethicists in the Ivy League have pushed the concept of the unilateral DNR as merely an “ethics” violation and not a tort or a crime because they wanted full autonomy and protection from any “compassionate harm” and/or any over treatment for profit that they may have committed. The bioethicists have never disclosed the connection of medical futility to fiscal futility for the hospitals when non beneficial over treatment, mistakes, errors, omissions, or exceeding the diagnosis related group caps are NOT reimbursed by Medicare, and its private partners, Big Insurance.
I was shocked to read the Article “Uncertainty and Futility: A Case Study” by Thomas P. Duffy, a physician from Yale, and comments by other bioethicists who rationalized and justified cruel over treatment of a patient as “compassionate” and “ethical” when, to me, it seemed so obviously unethical and illegal.
We realize now that WHEN the ACA and IPAB will come into existence that physicians will no longer be free to over treat patients with immunity under Medicare Law and federal law. The lawsuits against some oncologists by The Department of Justice and Health and Human Services in 2013 will act as a warning to all physicians NOT to over treat for profit, won’t it?
Because the covert and overt(default) DNR code status has not been punished in the Courts for 22 years, the Hospitals/physicians feel very safe and comfortable that the covert and overt DNR code status will probably, in most cases, go undiscovered either by the patient or the surrogate after the patient is dead. When the elderly and the disabled die in hospitals, this appears to be in the normal course of events and what surrogate family member or other surrogate would ask to see the chart?
I hope all of the organizations who work for justice for the Disabled and the Elderly will join together to stop the epidemic of covert and overt unilateral(default) Code Status being placed in the hospital charts of elderly/disabled patients for the fiscal expediency of the hospitals.
Hopefully, the Executive will stop this NOW and Medicare will MANDATE that all physicians in the outpatient setting will SEEK informed consent for either Curative Care OR palliative care/transition to Hospice from their elderly/disabled Medicare/Medicaid patients in the interests of justice and in fidelity to the law. A few states have changed their laws to require physicians to at least inform their patients that there is another standard of care reimbursed by Medicare, i.e. , palliative care and transition to Hospice.
This is not a political thing! Both political parties have been complicit in producing this sad state of affairs that so endangers elderly/disabled Medicare/Medicaid patients. . The compromise between Democrats and Republicans appears to be in making Curative Care and Hospice Care a concurrent entitlement in the law wherein patients will be referred to Hospice sooner in the course of their terminal diseases by the treating physicians. But, how many more elderly/disabled patients will have their deaths hastened for fiscal expediency before the law can be changed?. And what about the epidemic of Hospital takeovers of physicians practices?
The specialists will cooperate NOW, of course, because they will no longer be able to bill for non beneficial over treatment of patients under the ACA and IPAB. Elderly/disabled patients will then die at much less expense to Medicare and the private insurers when they die in their own home and not in expensive ICU and CCUs in our acute care hospitals —–and this was the original vision of the 1991 PSDA.
But! shouldn’t the WHISTLE be blown now in the interests of justice for all and fidelity to the law? .