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October 23, 2018 - Jackson, Mississippi Tuesday, October 23, 2018
 
 Federal Register Notice
 Agenda
 Minutes
 **Tuesday, October 23, 2018** 10:00 AM Eastern, 9:00 AM Central, 8:00 AM Mountain, 7:00 AM Pacific **LOCATION:** Hilton Garden Inn Jackson/Downtown, Triple C’s: Club, Crown, Coronet 2nd Floor, 235 W Capitol Street, Jackson, MS 39201 **CALL-IN NUMBER:**  800-667-5617, Conference ID: 6973399; Conference Title: NCD Meeting; Host Name: Neil Romano **CART:** http://www.streamtext.net/player?event=NCD-QUARTERLY **AGENDA (Central Time)** 9:00 am -  9:15 am **Welcome and Introductions, Chairman Neil Romano** ​Acceptance of Agenda
  Roll Call of NCD Council Members and Staff
  Approval of Minutes 9:15 am -  9:45 am **Executive Reports** Chairman’s Report, Neil Romano
  Executive Director’s Report, Lisa Grubb
  Financial Representative’s Report, Billy Altom
  Governance Representative’s Report, Rabia Belt
  Director of Policy Report, Joan Durocher
  Director of Legislative Affairs Report, Anne Sommers  9:45 am - 11:45 am **National Disability Employment Policy, From the New Deal to the Real Deal: Joining the Industries of the Future** Regina Kline, Inclusivity Strategic Consulting
  Andrew J. McQuaide, Perspectives Corporation
  Jennifer White, Able Opportunities, Inc.
  Shaun Bickley, Arc of King County
  Edward McLaughlin, Employee, Volunteer, and Self Advocate 11:45 am -  1:15 pm **Lunch, On Your Own**   1:15 pm -  3:15 pm             **Bioethics and Disability Panel** Ethical questions that arise in the context of access to    medical interventions and potential impacts of emerging genetic technologies on the lives of people with disabilities. David Wasserman, National Institutes of Health – Clinical Center Department of Bioethics - Disability issues in healthcare allocation, fetal medicine, and gene editing
  Gregor Wolbring, University of Calgary – Genetic testing to gene editing
  Karen Corby, Mother – Disability discrimination in organ transplants
  Ari Ne’eman, mysupport.com – Medical Futility and “Quality Adjusted Life Years”
  Cathy Ludlum, Second Thoughts Connecticut – Disability issues in assisted suicide  3:15 pm -  3:30 pm           **Break** 3:30 pm -  4:15 pm  **Institutionalization of Persons with Disabilities during and after Disasters Report Update** Melissa Marshall Disability Consulting, LLC
  Marcie Roth, Partnership for Inclusive Disaster Strategies 4:15 pm -  4:45 pm  **Town Hall to receive Public comments on Bioethics and Disability** **We’re want to hear from you!** **Your insight is instrumental and helps to steer the direction of NCD’s reports. Work is underway in the following areas and we’re ready to hear from you about those topics.** The five areas NCD intends to look at are organ transplants; medical futility; Quality Adjusted Life Years; Physician Assisted Suicide; and Genetic Testing. Despite the growing understanding that disability is a normal part of the human experience, the lives of people with disabilities continue to be devalued in medical decision-making. The devaluation of people with disabilities has been widely recognized, and is apparent on the face of laws and policies that allow hospitals and physicians to deny or withhold care based on subjective criteria on quality of life, such as denying a young boy a life-saving liver transplant because he has autism, and denying a life-sustaining medical treatment to a woman with quadriplegia because the medical team determines that she will be dependent on the care of others if she survives. It is heard in the advice given to families of people with disabilities, or to people with disabilities themselves, to forgo or end medical care rather than continue life with a disability; and when a doctor describes to expectant parents that it will be expensive and emotionally burdensome if they choose to have a child that genetic tests show may have a disability. The devaluation is implicit in the lack of federal guidance making clear to the medical community that it is a violation of the Americans with Disabilities Act to discriminate in the provision of medical care based on a person’s disability. 4:45 pm -  5:00 pm  **Unfinished Business** 5:00 pm **Adjourn**


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