**Quarterly Meeting**

**October 23, 2018**

**Jackson, Mississippi**

**ATTENDANCE**

**Members						Staff**

Neil Romano, Chairman				Lisa Grubb, Executive Director

Billy Altom						Amy Nicholas

Rabia Belt						Amged Soliman

James Brett						Keith Woods

Wendy Harbour				           Netterie Lewis

Benro Ogunyipe 					 

Clyde Terry						**Via telephone**

							Joan Durocher											Anne Sommers

							Pheobe Ball

**ABSENT**		                  Daniel Gade

Andres Gallegos		

**NCD Contractor**

Anthony Simpson

**Guests**

Lisa Burck, ARC; M. McLaughlin, parent; Edward McLaughlin, Employee, Volunteer, and Self Advocate;  Kawana Jenkins, NAMI; Patrina Pendaris, NFB; Christy Dunaway, MEMA; Pam Dollar, MSCCD; Scott Crawford, MSCCD; Johnny McGinn, MSD; Susan Henderson, DREDF; Kenneth Sellis, MDR; Terrintha McAllean, Pamaela Wraggs, Life of MS; Regina Kline, Inclusivity Strategic Consulting; Andrew J. McQuaid, Perspectives Corporation; Jennifer White, Able Opportunities, Inc.; Shaun Bickley, Arc of King County; David Wasserman< NIH-Clinical Center Department of Bioethics; Gregor Wolbring, University of Calgary; Karen Corby, Mother; Ari Ne’eman,mysupport.com-Medical Futility and “Quality Adjusted Life Years”; Cathy Ludlum, Second Thoughts Connecticut-Disability Issues in Assisted Suicide;

A. **Welcome and Introductions**

Chairman Neil Romano called the meeting to order at 9:11 AM (ET) and welcomed Council members, staff and the public.  

B. **Acceptance of the Agenda**

**MOTION:**  Mr. Clyde Terry moved to accept the agenda of the October meeting. 

**SECONDED:**Ms. Rabia Belt

Roll Call Vote:

Neil Romano, Chairman 

Billy Altom: Aye		

Rabia Belt: Aye

James Brett: Aye   

Wendy Harbour: Aye       					

Benro Ogunyipe: Aye

Clyde Terry: Aye

C. **Attendance and Roll Call**

Neil Romano, Chairman 

Billy Altom		

Rabia Belt

James Brett				

Wendy Harbour				           					

Benro Ogunyipe

Clyde Terry

D. **Approval of the Minutes**

**MOTION:**  Mr. Clyde Terry moved to approve the July Council meeting minutes.

**SECONDED:** Ms. Rabia Belt

Roll Call Vote:

Neil Romano, Chairman 

Billy Altom		

Rabia Belt

James Brett				

Wendy Harbour				           					

Benro Ogunyipe

Clyde Terry

E. **Executive Reports**

**Chairman’s Report, Neil Romano**

Mr. Romano stated that one of the largest disability organizations is taking the 14 (c) report and use it as a basis of the conversation for their corporations NOD will also use it in their discussions.

He stated that he has meet with a group of 12 largest disability groups in the United States named the *“Bridge Group”* named after Tom Bridge which are in support of the recommendations within the report.

Mr. Romano stated that Congress has asked the Council to convene meetings on ways in which we are going to support the ABLE Act.  The Council is responsible to help federal and state agencies understand the value of ABLE programs.

Mr. Romano stated he attended a dinner at the Embassy of Afghanistan and discussed the issues that they have regarding people with disabilities as well as talked effectively about the Council’s responsibility to Americans in others worldwide as it relates to people overseas and as counsel to look at such issues.

**Executive Director’s Report, Lisa Grubb**

Ms. Grubb stated the FY’18 has been closed with very little funds remaining, a very good management of funds.  She added that the Council received its FY’19 budget and is operating under a continuing resolution.

Ms. Grubb stated that forms will be submitted to Council members and staff to get their feedback on priorities for the fiscal year and a potential vote for the February meeting.

Ms. Grubb stated that we are continuing to implement security requirements. Council members were sent an email regarding background investigation, and all members should respond at their earliest convenience so the agency will be in compliant with security requirements.

Ms. Grubb updated the council on the following: 

· Lease renewal for the DC office space

· NCD worked with GAO to close out the drug labeling campaign

· Collaboration to plan upcoming ABLE information sessions

**Financial Representative’s Report, Billy Altom**

Mr. Altom stated the FY’18 budget reflects a remaining balance of $390,000 due to obligations that have yet been billed.

**MOTION:**  Mr. Clyde Terry moved to accept the FY’18 budget.  

**SECONDED:** Ms. Rabia Belt

Roll Call Vote:

Neil Romano, Chairman 

Billy Altom		

Rabia Belt

James Brett				

Wendy Harbour				           					

Benro Ogunyipe

Clyde Terry

**MOTION:**  Ms. Wendy Harbour moved to accept the FY’19 budget.  

**SECONDED:** Ms. Rabia Belt

Roll Call Vote:

Neil Romano, Chairman 

Billy Altom		

Rabia Belt

James Brett				

Wendy Harbour				           					

Benro Ogunyipe

Clyde Terry

**Director of Policy Report, Joan Durocher**

Ms. Durocher reported on projects underway.  There were as follows:

· Progress Report which will include enforcement efforts from the DOL, EEOC and the Access Board

· Bioethics disability and report development

· Transplant medical facilities with genetic testing

· American Medical Association improvement of medical training 

· Recommendations have been made to the American Dental Association (ADA) that they revise code of professional responsibility

· The ADA house of delegates voted to accept the NCD revisions to their code without changes 

Ms. Durocher stated that the Council has been working with communities to revise the ethics and code of professional responsibility and the ADA house of delegates have voted to adopt the code for professional responsibility.

**Director of Legislative Affairs Report, Anne Sommers**

Ms. Sommers stated that the LAO team is fully staffed with its newest staff Nick Sabula who joined NCD in June.

Ms. Sommers stated the projects that are underway with the LAO team.   They are as follows:

· First ABLE Interagency Coordinating meeting held October 5 with IRS, CNL, ACL, ODEP, SSA, OSERS participating

· Representatives from 26 nonprofit organizations participated and provided insight from their constituency

· ABLE state coordinators 

· Progress report

· Two school choice reports (voucher and charter schools) to be release November 15

· Oregon conference on school choice reports 

· NCD sent two letters of support to for two bills that could during lame duck session

1) ABLE Age Adjustment Act

2) Tax credits aimed at helping businesses make their businesses accessible and retain and hire employees.

Ms. Sommers stated NCD’s 14 (c) report has been very well received by Congressional offices who have been working on this issue and will continue to work on it in the next Congress.

Ms. Sommers added that republicans and democratic offices have signaled support for many of the recommendations and we have received positive feedback from the community across the country via email.

F. **National Disability Employment Policy, From the New Deal to the Real Deal:  Joining the Industries of the Future**

Ms. Amy Nicholas gave a brief synopsis and introduced the panelist of this report.  The study trends on regarding American workers with disabilities and being paid a low minimum wage as well as looked at the recent policy changes and the misemployment model and work entities.****

Ms. Nicholas stated that work in supply chains studies have found service providers across the country are still grappling with providing employment services with an outdate system through dynamic changing legal and policy environment, as providers require to face significant barriers with programs and services.

Ms. Nicholas stated the report’s recommendations were to improve opportunities for integrated employment, self -employment and entrepreneurship of people with disabilities. 

Ms. Nicholas stated this report evaluates the progress made and reports the structural barriers that remain and identifies the services not modernized.  It highlights several successful examples of transformation, which providers transition away from providing services in segregated settings that pay 14 (c) at minimum wages to contemporary models and customized employment services that allow people with disabilities to work and thrive in CIE.

**Shaun Bickley, Arc of King County**reported on how to organize stakeholders because sub-minimum wage is something that disabled people do not want.  

Mr. Bickley stated that recommendations were taken to the City Council, Mayor’s office and the Office of Labor Standards which is the city agency that handed out the certificates and held a public comment period.

**Regina Kline, Inclusivity Strategic Consulting** stated at WIO introduces a definition that nearly combined definitions that used to be in federal law, so it consolidates three use terms: gainful employment, competitive employment and integrated setting.

G. **Bioethics and Disability Panel**

Ms. Torres introduced the panelist and listed the five topics to be covered in the report contracted to DREDF.  They are as follows:

· Organ transplants

· Quality adjusted life years

· Genetic testing and gene modification

· Medical fertility

· Physician assisted suicide

H. **Institutionalization of Persons with Disabilities during and After Disasters Report Update**

Ms. Nicholas reported that the report will examine why, when and how persons with disabilities were institutionalized during the emergencies as well as provide recommendations to the appropriate federal agencies, state and local municipalities and others getting institutionalize of persons with disabilities in future disasters and demonstrate the areas.

Ms. Marcie Roth, **Partnership for Inclusive Disaster Strategies** stated that the Department of Justice in 2007 made it clear that people with disabilities must be accommodated in the most integrated setting appropriate to their needs which is typically a mass care shelter. Closing people in nursing homes for the convenience of emergency management is prohibited.

Ms. Melissa Marshall, **Partnership for Inclusive Disaster Strategies** identified some of the factors that can lead to institutionalization and recommendations that re included in the report for preventing institutionalization during and after disasters. 

Ms. Marshall stated that people with disabilities are not getting equal opportunity and equal access to disaster related programs and services.  There is no transportation, assistive devices and the inability to apply for FEMA to ask for reasonable and to ask for reasonable accommodations.

I. **Town Hall to receive Public Comments on Bioethics and Disability**

Ms. Christy Dunaway wanted to the thank the Council for its work and efforts that they have placed into this study and report on Katrina.

Dr. Scott Crawford, Board Chair for the Mississippi Coalition for Citizens with Disabilities, stated that there is a great need for better transportation services for people with disabilities accessible affordable housing in Mississippi.

J. **ADJOURNMENT**

**MOTION:** Wendy Harbour moved to adjourn the meeting.

**SECONDED:**  Benro Ogunyipe 

Roll Call Vote:

Neil Romano, Chairman 

Billy Altom: Aye		

Rabia Belt: Aye

James Brett: Aye				

Andres Gallegos: Aye

Daniel Gade: Aye				           					

Benro Ogunyipe: Aye

Clyde Terry: Aye

The meeting adjourned at 5:00 p.m.

Date Approved by the Council: 

Signature 

Printed Name

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