National Council on Disability

Council Meeting

July 22, 2021

1:00 PM- 4:00 PM (ET)

ATTENDANCE

Members Staff

Andres Gallegos, Chairman Stacey Brown

James Brett, Vice-Chairman Joan Durocher

David D’Arcangelo Nick Sabula

Munz Kazmir, M.D. Keith Woods

Rick Rader MD, FAAIDD, DL (hon) Amy Nicholas

Neil Romano Ana Torres-Davies

Daniel Schreck Amged Soliman

Mary Vought Kimie Eacobacci

 Netterie Lewis

NCD Contractors

Anthony Simpson

Kadedra Walters

Cindy Smith

Guests

Michael Morris and Nannette Goodman, National Disability Institute

A. Welcome and Call to Order

Chairman Andres Gallegos called the meeting to order at 1:00 PM (ET) and welcomed 

Council members, staff, and the public. 

B. Roll Call

Chairman Gallegos conducted a roll call of Council members, staff and contractors and 

asked that everyone give a brief bio.

C. Acceptance of the Agenda

MOTION: Chairman Gallegos moved to accept the agenda.

SECONDED: James Brett

Roll Call Vote:

Andrés Gallegos, Chairman

James Brett: Aye 
David D’Arcangelo: Aye

Dr. Munz Kazmir: Aye

Dr. Rick Rader: Aye

Neil Romano: Aye

Daniel Schreck: Aye

Mary Vought: Aye 

Motion Passed Unanimously

D. Acceptance of May 13, 2021 Council Meeting Minutes

MOTION: Dr. Kazmir moved to accept the draft minutes of the May 13, 2021 quarterly 

minutes.

SECONDED: Mr. D’Arcangelo

Roll Call Vote:

Andrés Gallegos, Chairman

James Brett: Aye

David D’Arcangelo: Aye

Dr. Munz Kazmir: Aye

Dr. Rick Rader: Aye

Neil Romano: Aye

Daniel Schreck: Aye

Mary Vought: Aye 

Motion Passed Unanimously

E. Chairman’s Report 

Chairman Gallegos reported the following:

• May 19th met with the Office of Management and Budget (OMB) regarding the 

Council’s view on the use of quality-adjusted life years in form prescription pricing;

• May 20th the Council released a report on accessible medical equipment in which a 

webcast was conducted along with the Departments of Justice and Health and 

Human Services Office of Civil Rights with 308 in attendance;

• May 25th provided testimony before the U.S. Commission on Civil Rights on FEMA’s 

response to Hurricanes Maria and Harvey. As a follow up to the testimony, the 

commissioners have posed a handful of additional questions for which the Council 

will be responding. Chairman Gallegos thanked Amy Nicholas for her assistance in 

preparing the testimony and researching the answers to the follow up questions 

pose;

• June 4th the chairman delivered a keynote address at the American Academy of 

Developmental Medicine and Dentistry’s annual conference. Chairman Gallegos 

thanked and recognized the outstanding achievements of Council member Neil 

Romano, Amged Soliman and other Council members for their work;

• Chairman Gallegos met with the Institute of Exceptional Care’, CEO Mai Pham and 

shared the work of the Council on health equity;

• June 8th wrote to the Secretary of the Department of Health and Human Services to 

discuss health disparity and ableism with the healthcare profession. The Council 
wanted to discuss strengthening its federal nondiscrimination mandates moving 

forward with section 307 of the Affordable Care Act which required the Secretary of 

Human Services to develop a model curriculum;

• June 21st the Council wrote to the Joint Commission, it’s President and CEO Mark 

Chassin regarding a meeting to discuss the role of the Commission to discuss the 

absence of disability cultural competence training in medical education, including 

post-graduate clinical training and residency and fellowship programs, the Council 

received a response and a meeting is scheduled for August 4th;

• June 22nd audit kick off Almond and Company, CCP will be conducting the audit and 

anticipated completion November 15th;

• July 14th a letter was sent to Thomas Nasca, CEO, Council on Graduate Medical 

Education and requested their assistance in incorporating into residency and

fellowship disability culture competent curricula;

• June 24th sent a letter to the U.S. Attorney General, and assistant Attorney General 

requesting a meeting with the Council and US Access Board to discuss to discuss 

the adoption of the Access Board standards for medical diagnostic equipment and to 

discuss strengthening Title II and III of the ADA regulations with respect to 

accessible healthcare;

• July 12th NCD staff and the chair met with FEMA administrator and the director of 

the Office of Disability Integration and Coordination and discussed a closer working 

relationship between the two agencies; 

• Chairman Gallegos and Ms. Nicholas spoke with the Saving Institutional Lives via 

Emergency Relocation Conference. The conference was hosted by Marcie Roth 

and the Partnership for Inclusive Disaster Strategies hosted the meeting. The focus 

was on the lives lost during the pandemic, work that sill continues and answers that 

are needed from the government in order to protect the most vulnerable to COVID19 which would be to protect and save the lives;

• Presented at the Shirley Ryan AbilityLab and highlighted the role of the Council as a 

federal voice for people with disabilities and inclusive healthcare;

• In commemoration of the 31st anniversary of the ADA interviewed Lex Frieden, an 

NCD former chairman and attended an event at the White House commemorating

the anniversary;

• Met with Emily Voorde, Associate Director of the White House Office of Public 

Engagement and discussed the Council’s interest in having a White House 

convening to take a critical look at the disproportionate effect the pandemic has had 

on people with disabilities, primarily those with emotional and intellectual disabilities 

living in congregate settings.

F. Puerto Rico Report

Ms. Amy Nicholas reported the major findings as being:

• Puerto Rico is the poorest of territories; with many residents that live well below the 

poverty line. The annual per capita income being $18,000;

• Between hurricanes and earthquakes, Puerto Ricans have been migrating to the 

mainland in great numbers, 2011-2012 approximately 55,000 , 2018 60% live on the 

mainland of the United States with only 36% residing on the island;
• Puerto Rican population of people with disabilities is 21% compared to the average 

in the states of 15%;

• Shipping costs are to other islands are less than that to Puerto Rico which in turn, 

affects and impacts people with disabilities who need medical equipment with 

residents paying 11-50% higher prices for their DME than those that reside in the 

states;

• During the disaster relief from hurricane Maria $600 million in food aid was provided 

as well as construction, the additional cost of construction because of the Jones Act 

led to a 10-20% reduction in aid to the island;

• 39% of all Puerto Rican residents receive Medicaid, whereas only 10% do on the 

island, with Puerto Rico receiving less funding than any other state for their Medicaid 

program;

• Approximately 29% of people on the island are covered by Medicare compared to 

15% in the states;

• Social security is the biggest disparity of Puerto Rico but are eligible for Aged, Blind 

or Disabled program. The SSI monthly benefit is $75 a month as compared to $700 

for residents in the states;

• Supplemental Nutrition Assistance Program (SNAP) is not available but are to other 

territories (i.e., Guam and the U.S. Virgin Islands);

• There are also disparities in education, employment, housing, transportation, and 

emergency preparedness.

Recommendations are as follows:

• Private and Public universities and the federal government start including data on 

Puerto Ricans with disabilities living on the island, and other territories, to improve 

accountability so we can ensure appropriate resources are provided to ensure equity 

in programs;

• The Council recommends that Congress repeal the portion of the Jones Act 

provisions as has been done in other territories;

• The Council recommended the amendment of Title 16 of the Social Security Act so 

that benefits are awarded to Puerto Rican residents;

• The Council recommended the same regarding Food Stamp Act to include Puerto 

Rico in the SNAP Program;

• The Council has asked federal agencies reevaluate their funding formulas for the 

federal benefits and programs to ensure equitable distribution of funding for 

programs in education, employment, housing, transportation and that the Puerto 

Rican government can attain these funds to make things more accessible for those 

with disabilities;

• The Council has asked that HUD ensure that all construction projects destined for 

the island territories to have efficient and effective use of funds.

G. Executive Report

Ms. Joan Durocher submitted the executive report in Anne McIntosh’s stead. Ms. 

Durocher coordinated a vote on the upcoming policy work for FY ’22. Council members 

who submitted their proposal spoke briefly on them and each Council member voted on 

their top three. 
Project One: Puerto Rico Chairman Andres Gallegos

Chairman Gallegos stated that the Council had the opportunity to file an amicus briefs.

There are two Supreme Court cases coming up on the October 21st report that will be of 

importance to people with disabilities. They are the following:

• United States v. Vaello-Madero and it questions whether Congress violated the 

equal protection of competent of due process clause by establishing supplemental 

disability income to needy, aged, and blind disabled in the 50 states, the District of 

Columbia and Northern Mariana Islands but not extended to Puerto Rico.

• Cummings v. Premier Rehabilitation, 5th Circuit Court of Appeals. This issue is 

whether the damages Under Title VI of the Civil Rights Act of 1964 and the statutes 

from it is for victims of discrimination such as Rehabilitation Act of 1973 and Section 

5057 of the Affordable Care Act include compensation for emotional distress.

Chairman Gallego that the Council has identified a couple of third year law students that 

are very interested in helping with our research projects and will assist with helping us 

filing amicus briefs and assisting in that research.

Project Two: Medicare Coverage, determination of Complex Rehabilitation Technology

Chairman Andres Gallegos

Chairman Gallegos stated in the connection with the Puerto Rico Report and that would 

be the ability for people with disabilities and paralysis to get approval for complex 

rehabilitation technology. Complex rehabilitation technology is a wheelchair or a mobility 

device that has tilt and recline function, an elevated seat, standing capability and 

balance as well as other features to allow wheelchairs to drive up and down steep 

inclines and over a wide variety of terrain. The new technology will allow climbing up 

and down stairs.

Chairman Gallegos stated that the Veterans Administration uses an approach where 

they look at the quality of life of an individual and whether or not the technology that’s 

being requested is going to improve their lives and ability to integrate into their 

community and live the independent lives that they desire.

Chairman Gallegos stated that the projects will do the following: 

• will critically analyze the method by which Medicare is reviewing the request for 

complex rehabilitation technology;

• take in account the emotional and mental health of people requesting the equipment; 

• look at the improvements that the equipment will have on their physical health;

• look at the financial well-being impact on an individual once they receive the 

equipment;

• determine whether or not the government is doing what is responsible and 

holistically.

Project Three: Federal Disability Job Programs Inventory and Assessment Neil 

Romano

Mr. Romano stated the Government Accountability Office (GAO) has said that 20-30% 

of funds spent on employment of people with disabilities are either not known where 

they are going or completely wasted. There is no assessment of these programs. We 
need to know what needs more funding, and what needs to be rolled into another 

program.

Project Four: Tax Policy Project Kimi Eacobacci

Ms. Eacobacci recommends the Council examine the legal implications of a 

longstanding categorical exclusion that has been recognized by the Internal Revenue 

Service (IRS) regarding people with disabilities working in congregate settings. During 

the pandemic people were being furloughed, many working from congregate settings 

who were being paid well above minimum wages and were applying for unemployment 

benefits. Findings have shown in Louisiana they people were being denied and that

they were not employees under the state’s unemployment tax definition.

Ms. Eacobacci stated that the Council has found in 1965 the IRS created a revenue 

ruling that stated that people with disabilities working in congregate settings are in fact 

not employees. The pay they receive in not wages for FICA and unemployment tax 

purposes, therefore they were being segregated on their benefits.

Ms. Eacobacci stated that sheltered workshops were getting private rulings from the 

IRS to find that people with disabilities working in their settings were not clients and 

according to the Social Security Administration (SSA) and the Department of Justice 

(DOJ) actually enforced several of these cases and found that many people in these 

congregate settings around the country were not employees as well.

Ms. Eacobacci stated that the Council has also found that other federal agencies have 

also incorporated a categorical exclusion that the IRS recognizes as well as the 

National Labor Relations Board has adopted as well.

Ms. Eacobacci stated that the Council would like to have a conversation with the IRS 

and SSA to make sure that people with disabilities working in congregate settings are 

collecting the credits that they are working towards.

Project Five: Environmental Justice Amy Nicholas

Ms. Nicholas stated that this year’s progress report is environmental justice. She stated 

that the poorest people will continue to experience the worst effects of climate change 

through displacement, lack of food resources, and impacts of their health. As reported 

in the Puerto Rico Report, Institutionalization, and other reports the incidence of dealing 

with disasters before, during and after a disaster the difficulties in getting accessible 

shelter and being reintegrated back into society when the community has been 

destroyed.

Ms. Nicholas stated that the report will also address the following:

• aimed to look at the intersecting factors of discrimination that relate to disability as 

well as gender and race;

• look at the impact to a person with a disability’s access to healthcare and the ability 

to survive extreme weather events;

• will integrate the administration’s reinvigoration of Executive Order 13175 which 

states that all departments and agencies should engage in regular, meaningful, and 

robust consultation with tribal agencies;

• climate change and effects on people with disabilities;

• Medicaid probability in regard to disasters and the ability to be able to care for 

oneself.
Project Six: Convention on the Rights of People with Disabilities & International 

Development Joan Durocher

Ms. Durocher stated she has met with the State Department and the United States 

Agency for International Development to discuss the status of the CRPD and what the 

Council can do to move forward its international efforts impacting people with 

disabilities. She added that it was suggested that the Council look at environmental 

scan or mapping project t at what federal agencies are doing across the government in 

their international development efforts. The Unites States spends millions of dollars on 

overseas development efforts and within those assistance programs there should be 

assisting people with disabilities.

Project Seven: Medicaid Reimbursement Neil Romano and Dr. Rick Rader

Dr. Rader stated that 80% of adults have some form of gum disease which they have 

for life. Poor oral health contributes to the 20-year longevity disparity that are seen in 

people with intellectual developmental disabilities. He added that oral healthcare is the 

number one unmet health need not only for those with intellectual developmental 

disabilities but the full spectrum of disabilities.

The Council has done great work in the past with the National Council on Dental 

Accreditation and the American Dental Association in which the Council influenced them 

change their code of ethics. This has manifested a mandate that all dental students 

graduating from U.S. dental schools will be able to demonstrate hands on competency 

training in the evaluation , management, and treatment of oral healthcare for people 

with disabilities.

Dr. Rader stated that the Council needs to create and provide an economic sensibility 

for dentists to practice on individuals with intellectual and developmental disabilities as 

well as a variety of sensory, cognitive, physical, neuro-motor disabilities, etc.

Ms. Durocher asked Council members to submit their projects by priority. They were as 

follows:

Chairman Gallegos Number 1 - project 2

Number 2 - project 3

Number 3 - project 9

Jim Brett Number 1 - project 9

Number 2 - project 3

 Number 3 - project 4

Dr. Rick Rader Number 1 - project 8

Number 2 – project 4

Number 3 – project 6

Daniel Schreck Number 1 – project 1

Number 2 – project 2

Number 3 – project 4
Neil Romano Number 1 – project 8

Number 2 – project 6

Number 3 – project 4

David D’Arcangelo Number 1 – project 4

Number 2 – project 6

Number 3 – project 9

Dr. Munz Kazmir Number 1 – project Medicare reimbursement

Number 2 – Jobs

Number 3 – project 5

Mary Vought Number 1 – project 9

Number 2 - project 6

Number 3 – jobs project

H. Governance Committee

Dr. Rader stated there was nothing new to report at this time, however, remain vigilant 

to ongoing suggestions and potential future actions.

I. Finance Report

Mr. Schreck stated that there are two orders of business and they were as follows:

• Approval of the status of funds for June 30, 2021;

• Full fiscal year budget

Mr. Schreck commended Mr. Woods for his work on the financial reporting and audit in 

Lisa Grubb’s stead. The Council is operating under a $3.35 million which has increased 

$100,000 and a pass back of an extra $400,000. 

• $100,000 increase in travel and transportation;

• $83,000 increase in salary and benefits;

• $227,000 a 25% increase in contracts and policy work;

• 27% increase in research contracts;

• 67% increase in contracts services;

• 24% increase in IT services

MOTION: Chairman Gallegos moved to approve the status of funds as of June 30, 

2021. 

SECONDED: Dr. Munz Kazmir

Roll Call Vote:

Andrés Gallegos, Chairman: Aye

James Brett: Aye 

David D’Arcangelo: Aye

Dr. Munz Kazmir: Aye

Dr. Rick Rader: Aye

Neil Romano: Aye
Daniel Schreck: Aye

Mary Vought: Aye 

Motion Passed Unanimously

MOTION: Chairman Gallegos moved for approval of the Council budget for the full FY 

’21.

SECONDED: Dr. Rick Rader 

Roll Call Vote:

Andrés Gallegos, Chairman: Aye

James Brett: Aye 

David D’Arcangelo: Aye

Dr. Munz Kazmir: Aye

Dr. Rick Rader: Aye

Neil Romano: Aye

Daniel Schreck: Aye

Mary Vought: Aye 

Motion Passed Unanimously

J. National Disability Institute- Michael Morris and Nannette Goodman

Chairman Gallegos introduced the present and former head s of the National Disability 

Institute who addressed the Council about the cost of being disabled in the United 

States 

Mr. Morris is the founder and senior strategic adviser and Ms. Goodman, research 

adviser who has written journals, books, and prepared reports for the Council. They 

shared very significant implications for both existing policy as well as the activities and 

operations of multiple public benefits and programs by an array of federal agencies and 

departments.

K. Strategic Plan Presentation

Mr. Jim Brett and Mr. Soliman reported the following:

• Council submitted to OMB June 4th which outlines the Council goals and related 

objectives for 2022-2026;

• The Council is currently putting together a rough draft of a full initiative which is 

due to OMB mid-September;

• The Council will seek input in the form of public comment, from the community, 

and Congress;

• The Council has scheduled a virtual event for August 3rd 1:00-3:00 pm.

L. Subcommittee Updates

Medically Underserved Population Designation & Disability Cultural Competency 

Curriculum
Dr. Rader stated the Council continues to build upon its previous efforts and successes 

to address the lack of health equity in the U.S. for people with disabilities. They council 

also has done the following:

• The Council organized a meeting of experts to discuss the potential drafting of new 

broad based health equity legislation;

• Executive action aimed at addressing health equity across all disabilities;

• Met with the Domestic Policy Council at the White House to begin developing a plan 

for potential interagency working group to address issues of health equity;

• The council has drafted an executive order and presented to the White House for 

consideration;

• The Council is exploring recommendations for congressional action, including not 

limited to the goal of designating people with a disability as a specifically medically 

underserved population;

• Lack of disability competency training of medical students and professionals to be 

address, Council to meet with the hospital accreditation; 

• The council is having ongoing conversations with the Society of Teachers of Family 

Medicine, the Association of Family Medicine Residency Directors, the American 

Association of Medical Colleges, the Liaison Committee on Medical Education, and 

the Accreditation Council for Graduate Medical Education.

Use of Quality-Adjusted Life Years (QALY’s) as a Barrier to Health Care Access

Ms. Vought stated that Ms. Torres-Davis has done tremendous work and drafted a 

statement of work for a report that would examine the extent of which states are using 

QALYs based effectiveness reports or international drug prices. The report will gather 

evidence that shows whether reliance of this information is denied access or coverage 

to drugs that are necessary for those with chronic illnesses.

Ms. Vought stated the Council publicly posted a notice of funding opportunity 

incorporating statement of work on grants.gov and the Council website in hopes of 

seeking a contractor to help develop this report over the next six months. We received 

a proposal from Turdohl Consulting LLC which will be evaluated by an external review 

panel and hopefully work on the report will commence I August.

Ms. Vought stated the Council was successful in getting QALY language included in the 

recent House appropriations report. It encourages CMS to study alternatives to the use 

of QALY in determining prices and coverage for medications and treatments, requests 

an alternative to QALY and any best practices that can be used for the pricing of 

medications and treatments involving coverage.

Rationing and Denying Health Care for People with Disabilities

Mr. Schreck stated that this policy builds on the Council’s soon-to-be released progress 

report of 2021, specifically as it regards to the widespread deaths of people with 

intellectual and developmental disabilities living in congregate settings during the 

pandemic.

Mr. Schreck added the following:
• Ms. Torres Davis developed a statement of work to examine the state of the nation’s 

home and community-based services;

• Report will layout a solid foundation for the need for permanent sufficient HCBS 

funding to ensure that states have the capacity to provide more non-congregate 

housing options and services for to people with disabilities who can and want to live 

in a community; 

• Proposal of a comprehensive plan to increase community living options with 

necessary services and supports;

• The Council has been at the forefront of advising on institutionalization of people 

with disabilities after disasters ;

• Highlights obligations under the Supreme Court’s Olmstead decision and the ADA’s 

most integrated setting mandate;

• Dr. Cars Airs, Associate Director, University Center for Excellence in Developmental 

Disabilities will work on this project.

Emergency Management in disaster relief

Chairman Gallegos stated the following:

• The Council has provided recommendations in the form of draft legislative language 

to the Senate;

• The Council met with the FEMA administrator and discussed the need of additional 

guidance;

• The Council is drafting recommendations concerning the consideration and needs of 

people with disabilities;

Councill Chair testified at the U.S. Commission on Civil Rights concerning necessary 

emergency planning and disaster relief for people with disabilities and that it is 

unacceptable to institutionalize people with disabilities during disasters;

• The Council continues to review current law and policies and comprised specific 

recommendations to address vital matters;

• Continue to address FEMA and other federal agencies.

Fostering Job Growth for People with Disabilities through Small Business Administration 

8 (a) Business Developmental Program

Mr. D’Arcangelo stated that he met with Council staff and comprised an introductory 

approach and gathered some data from the subcommittee in submitting a letter to the 

SBA and wanting to meet with them to discuss programmatic definition of disabilities.

Pursuing Better Data and Federal Guidance Regarding Sexual Assault of Students with 

Disabilities

Dr. Kazmir stated based on the Council’s 2018 report, sexual assault on college 

students with disabilities which founded that 30% of female students with disabilities 

reported experiencing sexual assault on campus. Since the last Council meeting, the 

Council submitted two recommendations from this report congressional offices as 

suggested language for the upcoming appropriation bill.

UN Convention on Civil Rights for Persons with Disabilities
Ms. Durocher stated since the last Council meeting, she’s met with the State 

Department and the United States Agency for International Development to talk about 

the current status of the CRPD and its current status. We are pursuing an alternative 

project and looking at disability inclusion in international affairs.

M. Public Comments

Chairman Gallegos stated that the Council has received public comment and asked 

Nick Sabula to give an update.

Mr. Sabula reported the following comments received from the public. They were from 

the following:

• Alyssa Marlow-focused on disabled veteran employee, FERS and HUD grants

• Amy Cooper-need of funding and research

• Melissa Karabin-focused on long effects of COVID

• Laura Kiesel-focused on affordable housing

• Phillip Kahn-Pauli-submitted comment on behalf of RespectAbility

• John Derby

• Lisa Cooley-transportation companies

• Eric Clements-focused on housing and non-emergency medical transportation

• Leslie Schultz-submitted on negligence of the disabled

• Paulissa Kipp-trauma -informed care and disability awareness in emergency 

departments

• Mary Lamielle-environnemental intolerance and sensitivities

• Brock Hunsacker-SSI online applications, expanded online status checks for SSA

• Heather Hussey-inclusive education

• Steve Warner-resiliency

N. Unfinished Business & Next Council Meeting

Mr. D’Arcangelo stated that Becca Myers is a Paralympic athlete that is competing the 

Paralympics.

Chairman Gallegos stated that he Fall Council meeting is scheduled for October 7, 2021

12:00 noon – 4:00 pm (ET)

MOTION: Chairman Gallegos moved to adjourn the meeting.

SECONDED: Mr. Jim Brett

Roll Call Vote:

Andrés Gallegos, Chairman

James Brett: Aye 

David D’Arcangelo: Aye

Dr. Munz Kazmir: Aye

Dr, Rick Rader: Aye

Neil Romano: Aye

Daniel Schreck: Aye

Mary Vought: Aye 
Motion Passed Unanimously

The meeting adjourned at 4:00 p.m.

Date Approved by the Council: October 7, 2021

Signature 

Andrés J. Gallegos

Printed Name