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National Council on Disability 

Council Meeting 

July 12-13, 2023 

ATTENDANCE 

Members Staff 

Andres Gallegos, Chairman Joan Durocher 

Hoskie Bennally, Jr. Stacey Brown 

Sascha Bittner Kimie Eacobacci 

Theo Braddy Netterie Lewis 

Shawn Kennemer Amy Nicholas 

Risa Rifkind Nick Sabula 

Emily Voorde Ana Torres-Davis 

Keith Woods 

Absent Absent 

Claudia Gordon, Vice Chair Anne Sommer-McIntosh 

Neil Romano Lisa Grubb 

NCD Contractors 

Amanda Lowe 

Anthony Simpson 

Kadedra Walters 

Guests 

Zainb Dhanani, Executive Director, Medical Students with Disability and Chronic Illness; 

Dr. Susan Havercamp, Director, Health Promotion and Healthcare Parity, The Ohio 

State University; Matt Holder, Past President, American Academy of Developmental 

Medicine & Dentistry; Dr. Priya Chandan, Clinical Associate Professor, Division of 

Physical Medicine and Rehabilitation, University of Louisville School of Medicine; Chloe 

Rothschild, Board Member, ARC; Dr. Jonathan Perlin, President and CEO, The Joint 

Commission; Dr. Shepley; President Elect, American Medical Association; Dr. John R. 

Combes, Chief Communications and Public Policy Officer; Accreditation Council for 

Graduate Medical Education; Stephanie Meredith, doctoral student, Georgia State 

University; Julie Sowash, Disability Solutions; Ramonia Rochester, National Disability 

Institute; Lydia X.Z. Brown, SSI; Dahlia Shaewitz, CEO of Third Sight; Geoffry Young, 

Senior Director of Transforming Healthcare Workforce; President, American Dental 

Association; Bruce Scott, President-elect, American Medical Association; George 

Shepley, President of the American Dental Association 
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Public Comment 

Kim Musheno, Vice President of Public Policy, Autism Society of America; Bart Devon, 

Senior Director of Eggleston; Vanessa Rastovic, Achievea, Disability Healthcare 

Initiative; Chapman Bryant, National Down Syndrome Congress; Nicholas Lawson,, 

Charlotte Woodward, National Down Syndrome Society; Janet Parker, Executive 

Director, Medical Advocacy Network; Doris Ray, ENDependence Center of Northern 

Virginia; Beth Kenny, Elizabeth Kelly, Executive Director for the Alliance; Debbie Funk, 

Vice President of Education and Inclusion; Lisa Aquila, Kate Small, Erin Putman, 

Catherine Ivy Kennedy, Alex Alvarez, Meghan Schrader, Linda Riley, Javier Robles, 

President, New Jersey Action Network and Chair of the New Jersey Disability Action 

Committee 

A. Welcome and Call to Order 

Chairman Gallegos called the meeting to order at 9:00 A.M. (ET) and welcomed Council 

members, staff, and the general public. 

B. Roll Call 

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

C. Acceptance of the Agenda 

MOTION: Sascha Bittner moved to accept the agenda as presented. 

SECONDED: Emily Voorde 

Roll Call Vote: 

Andres Gallegos, Chairman: Aye 

Sascha Bittner: Aye 

Theo Braddy: Aye 

Shawn Kennemer: Aye 

Emily Voorde: Aye 

Risa Rifkind: Aye 

Motion Passed Unanimously 

D. Chairman’s Welcome and Framing Remarks for Meeting 

Chairman Gallegos welcomed everyone to the first in person Council meeting in 4 

years. 

He stated the council meeting will cover the following topics. They are as follows: 

• Health disparities through educational curricula and training; 

• Updates on the Council’s projects in the areas of fetal medicine, germline editing 

and medical trials; 

• Council’s business meeting; 
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• Council member reports on their community contacts and updates sines the May 

2022 Council meeting; 

• 33rd anniversary celebration of the Americans with Disabilities with a fireside chat 

with Bob Burgdorf, who drafted the original legislation. 

E. Framework to End Health Disparities for People Across all Categories of 

Disabilities 

Chairman Gallegos reported that the Council published the Framework to End Health 

Disparities for People Across all Categories of Disabilities which was its approach to 

end health disparities. The framework is composed of 44 components including several 

key components being the following: 

• Enhanced data capturing; 

• Designation of facilities especially underserved populations; 

• Designating all people with disabilities as a health disparity population; 

• Medical and diagnostic equipment standards; 

• Developmental clinical care curricula and training 

Chairman stated that there are many studies that compare to non-disabled individuals 

showing that people with disabilities have a greater risk cancer, diabetes, heart disease, 

obesity. Ashma, hypertension, kidney and liver conditions and experience greater 

adverse pregnancy outcomes. Also, people with disabilities have a harder time 

accessing medical services, routine healthcare services, dental care, screenings and 

further document that people with disabilities have significantly higher ratios of limited 

physical activity. 

Chairman Gallegos stated the Association of American Medical Colleges which has 157 

United states medical schools that are accredited and only 35 voluntarily require a 

limited disability-related curriculum. He added there are 400 teaching hospitals and 

health systems which include the Department of Veterans affairs medical center, 96,000 

plus medical students and 153,000 residents in the United States. 

Chairman Gallegos stated that section 507 of the Patient Protection and Affordable 

Care Act of 2010 with the passage of the Patient Protection Care Act, permits the 

Secretary of Health and Human Services to issue grants to fund development and 

dissemination of a curriculum for cultural competency, prevention, public health 

proficiency, reducing health disparities and attitude for working with individuals with 

disabilities, training for use in health profession schools and continuing education 

programs. 

Ms. Risa Rifkind introduced the panelist that spoke on health disparities through 

disability clinical care. 

Chloe Rothschild, board member, of ARC and a medical student with a disability. Ms. 

Rothschild spoke about her medical experiences and how her needs were met. She 

encourages those with disabilities to be persistent with accommodation that they may 

need. She stated that it would be helpful if she had assistance in navigating her needs. 
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Ms. Rothschild stated mental health is another area of concern because it has been 

difficult to find a psychiatrist that can meet the needs. 

Susan Havercamp as regards healthcare, people with disabilities have a lower quality of 

life. She teaches in health education that disability is a negative health outcome that 

should be prevented and cured. Health care providers perceive that having a disability 

is incompatible with good health. These beliefs contribute to the discomfort of many 

healthcare providers in caring for patients with disabilities and to the poor healthcare 

that is provided in terms of less preventive health services, fewer testing and less 

aggressive treatments. Caregivers feel uncomfortable caring for patients with disabilities 

that they do not communicate directly with them. 

Ms. Rothschild stated that disability needs to be spoken of when speaking about health 

disparities, underserved populations, health equity and cultural competence. She added 

that it is necessary to build the next healthcare workforce to meet the needs of all 

people in society and to consider disability laws for other marginalized disabilities in 

education. She added that other factors would be as follows: 

• Must be intentional, concentrated efforts to ensure doctors medical staff training; 

• Doctors need to be patient and trained and be respectful; 

• Medical community should take issues seriously and challenge themselves through 

the myths, stereotypes, and discriminatory behaviors; 

• The medical community should adopt changes in their curriculum and professional 

training to address discrimination against people with disabilities; 

• Greater recognition and discrimination ableism creates poor health outcomes; 

• We want the medical community to support reforms to the healthcare system that 

can expand access to affordable, comprehensive healthcare for all people. 

Ms. Priya Chandan stated that the primary audience of focus for these concerns and 

issues are the educators, clinicians and researchers. Dissemination has to reach further 

with the health services and to applied researchers. 

Ms. Zainub Dhanani reported that medicine has made strides towards patients with 

disabilities with a long way to go. The history of medicine is full of discrimination and 

devaluing people with disabilities which alone has left a legacy that medicine still has 

not eradicated. There is a need for more disabled leaders in medical education and for 

dedicated training around ableism in healthcare for students as well as current 

providers. 

Disability is a form of diversity, and we believe that disability adds a valuable benefit to 

the community in medical education trying to help institutions and communicates 

understand that further. 

Ms. Dhanani pointed out the following issues. They were as follows: 

• Reasonable accommodations for students with disabilities are often riddled with 

transparency and barriers that hinder access to those accommodations; 
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• Main challenges for people with disabilities is obtaining reasonable 

accommodations. Particularly in clinical rotations and medical school; 

• Reevaluation and redesign of the accommodation process on all levels; 

• Medical education at large has been intending with increasing evidence of racial and 

gender bias within clinical clerkship assessments for students; 

• Licensing new physicians with under or unmanaged mental health issues is a 

concern far more detrimental to the profession and patents than supporting mental 

health for future providers and their licensing. 

Mr. Matt Holder stated the medical and dental professions need to do the following: 

• Barriers need to be broken between dentistry and medicine; 

• Research in clinics have found 60% of patients were sent to routine dental care, with 

an interdisciplinary approach, which can be reduced by 95% which in turn a $4,000 

visit would result in a $400 dental visit; 

• medical insurers are paying for anesthesia but not involved in the dental insurance 

payment side; 

• there needs to be a revamp to the training of healthcare providers; 

• shift the paradigm of working with people with disabilities into a preventive fashion; 

focus on prevention and primary care, there would be savings of unnecessary 

spending and hospitalizations, drugs, and ER visits. 

Dr. John Combes states there needs to be a faculty that can model the behavior of 

residents and medical students. Also, organizations need to be focused institutionally on 

providing equitable care. 

Dr. Combes stated the medical education accomplishes work from two mechanisms. 

Quality Assurance Function and education and resources which is a quality 

improvement function. All residency programs must have an AGG accreditation to be 

funded by Medicare. Most of our time is spent supporting the improvement function 

which includes initiatives around diversity, equity, and inclusion. 

Dr. Combes stated there is tool kit that is on his website that includes resources for 

programs to develop their training with the goal of promoting equity and diversity within 

in their program in additional to their approach to their patients to develop cultural 

competency in their residents. 

Dr. Bruce Scott sated the American Medical Association (AMA) has a longstanding 

policy that all individuals should have access to appropriate healthcare which includes 

people with disabilities. The AMA looks to help create the future of medical education 

for changes in the curriculum. 

Dr. George Shepley stated the AAMC has strengthened its standards of education by 

our commission on dental education, dental accreditation, CODA that graduates must 

be competent in assessing and managing the treatment of patients with special needs. 
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He added there is a principle of ethics and a Code of Professional Conduct where we 

added we cannot discriminate against people with disabilities. 

Dr. Jonathan Perlin stated the Joint Commission is not currently an educational 

standard setting organization but could affect the practice of healthcare broadly across 

the full continuum of care. 

Dr. Perlin stated that he led the VA as the undersecretary of health which specializes in 

a population with more challenges than the population at large. 

The Joint Commission actually was jointly founded by the American Medical 

Association, American Dental Association, American Hospital Association, American 

College of Surgeons and has the ability to convene and work together on important 

opportunities. 

Dr. Geoffrey Young that there is partnership with the Coalition for Disability Access in 

Health Science Education, and we are focused on helping students understand the ADA 

laws. 

F. Public Comments 

Kim Musheno, Vice President of Public Policy, Autism Society of America. She stated 

the following: 

• Spoke on the vaccination education program; 

• Autism Society of America believes improving vaccination experience is critical 

towards the achievement of a more equitable treatment of people with autism; 

• Historically, people with developmental disabilities have lower immunization rates 

than their peers, leaving them vulnerable to vaccine-preventable diseases; 

• Vaccine hesitancy is a longstanding issue within the autism community; 

• New grants from the Aging and Disability Vaccination Collaborative to expand our 

initiative; and was an initiative funded by the HHS Administration for Community 

Living to provide outreach, technical assistance, and support to promote vaccine 

update; 

• Creation of a path for increased vaccination rates for autistic individuals and those 

with complex support needs; 

• The Autism Society is working with local affiliates and healthcare partners across the 

country to increase vaccine competence, promote vaccine education in the 

community, educate healthcare providers, and to create accessible vaccine clinics; 

Bart Devon, senior director of Eggleston reported the following: 

• 501 (c) (3) nonprofit based in Virginia whose mission is to empower the disability 

community; 

• A nonprofit agency operating in the Ability One network; 

• Offering services for people with disabilities, reducing disparities and combating 

stigma; creating opportunities for local partnerships to develop on their own; 

• We work to develop relationships with local businesses to recognize each individual; 

• Supports healthcare access and equality; 
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Vanessa Rastovic, self-advocate, a state leader in disability health equity and access to 

inclusive care for education, public policy, and government advocacy. 

Ms. Rastovic stated that Congress must take advantage of current opportunity to quickly 

designate people with disabilities as a special medically underserved population; 

increase access to funding for preventive and primary care, training professionals, 

reimbursement incentives and health research. 

Chapman Byrant, National Down Syndrome Congress addressed the following: 

• Addressed the issue around individuals with down syndrome often face significant 

barriers and biases in healthcare; 

• Shortage on down syndrome community and stakeholders have expressed deep 

concern for the shortage for personal care attendants; 

• Family is forced to serve as unpaid caregivers, because people with disabilities re 

not receiving the car they need; 

• Lack of medical professionals with lack of knowledge of Down Syndrome poses a 

significant challenge; 

• Prioritization of training education for healthcare professionals to ensure they have 

the necessary skills to perform care; 

• Limited access to oral healthcare with 30 million people not paying dental visits; 

affecting people of color. 

Dr. Nicholas Lawson stated the following: 

• Ableism cannot be addressed in the medical and health professions if you are not 

addressing the problem of the unbelievably low numbers of people who have been 

empowered as people with disabilities in the professions; 

• Affordable Care Act not including people with disabilities in health inclusion sections; 

• The Health Inclusion Partnerships Act and the Affordable Act excluded people with 

disabilities did not include them in training programs. 

Ms. Charlotte Woodward, National Down Syndrome Society stated people with 

disabilities with Down syndrome want to be seen as people and deserve high-quality 

services. The government, families, the medical community, and people with disabilities 

bear the burden and responsibility to change the system and have the power to create e 

a more diverse society. 

Dr. Janet Parker, Executive Director, Medical Advocacy Network. 

Dr. Parker addressed her firsthand experiences regarding barriers in healthcare and 

bias. They are diverse needs for someone born deaf and learned ASL as children. 

NoraStated the following: 

• 400 physicians die by suicide each year due to depression; 
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• Rates of depression is higher across the board in all stages of training compared to 

the general population and compared to other people in graduate or similar levels of 

education programs; 

• Accommodation needs to be addressed. 

Doris Ray, ENDependence Center of Northern Virginia 

Ms. Ray complimented the Council on its important work on healthcare for people with 

disabilities. More funds are needed for compliance with DOJ working to make things 

compliant and ensure that all society is accessible to people with disabilities. 

Ms. Ray stated assistance is needed to help us at the federal level in getting guidelines 

on accessible diagnostic and medical treatment equipment and ensuring that there is 

access to medical information, making doctor’s appointments and accessing medical 

records through the internet by assuring web accessibility guidelines and regulations 

are adopted. 

Ms. Ray stated that problems and barriers continue to be in the physical environment 

and with access to effective communication and other accommodations in the 

healthcare environment due to the continued bias and negative stereotypes. All medical 

and healthcare facilities should be accessible. 

Ms. Beth Kenny stated that OCVID-19 policies are not based on scientists but are 

founded on the belief that disabled people are disposable. Healthcare needs to be more 

accessible. I am organizing a group to a help disabled people make reasonable 

accommodation requests in healthcare. 

Ellen Abberbock, independent living center, New York emphasized a greater need for 

accessible bathrooms, access to sign language interpreters and visual materials to be 

braille. 

Ms. Elizabeth Kelly, Executive Director, Alliance. She wants to advance medical 

education and training in critical care and competency that benefits people with 

environmental disabilities. A presentation was given to the Council at its May 2022 

quarterly meeting on the health disparities of people who are sensitive to chemicals and 

electromagnetic fields. 

January 2021, the agency convened a conference for health practitioners designed to 

educate them on how to recognize, diagnose, and treat people who suffer from 

environmental illness. 

Training for residents is important to understand the environmental sensitivities and how 

people are coping. 

G. Fetal Medicine and Germline Editing 

Ms. Stephanie Meredith reported that she spent several months reading literature, 

listening to presentations, and participating in public comment with bioethicists, science 
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and medical experts, and disability advocates on current’ potential interventions to 

prepare the report. The interventions range from prenatal surgery currently in practice 

such as repairing lesions for spina bifida in the womb, to complex procedures. 

Ms. Meredith covered the following in her report. They are as follows: 

• Addressed background issues including different types of genome editing, prenatal 

surgery technologies; equitable access, some implications derived from the history 

of eugenics, social, medical, and other models of disability; and disability hierarchy 

and disability identity; 

• The report with specifically evaluate genome editing pregnancy, changing the DNA 

of a fetus before birth; 

• Report will focus on germline genome editing used for reproduction; 

• Autistic Self-Advocacy Network have published their positions on these issues, 

saying they oppose genome editing because of the social and ethical impact for 

people with disabilities, due to potential editing out of people of disabilities as part of 

human diversity as well as the impact of future generations; 

• Genome editing because of the social and ethical impact for people with disabilities, 

due to the potential editing out of people with disabilities as part of human diversity 

as well as the impact on future generations; 

• 75 countries prohibit genome editing according to a global policy landscape analysis; 

• Prenatal surgery report refers to the surgeries to repair medical issues of a fetus 

during pregnancy, technology currently used for condition like spina bifida; 

• Report will address how many people with disabilities have published about heritage 

genome editing; 

• Disability advocacy groups have been vocal including Little People America and 

ASAN; 

• Literature review using disability studies articles, and science medical, and social 

science journals. I also researched nonacademic sources, i.e., popular media 

articles, documentaries, podcasts, and symposia featuring scientists, disability 

scholars, genome editing, prenatal surgery, and disability; 

• Received comments from 20 participants ranging from prominent bioethicists, 

experiences of people with disabilities, advocacy organization leaders from the 

National Autism Congress and Little People of America; 

• Broad representation from advocates with various disabilities and diverse racial 

backgrounds. 

Chapter one will is the background on gene editing definitions, fetal medicine overview, 

some of the genetic conditions that might be targeted by some of the interventions and 

eugenics and how to address it. 

Chapter two will address the ethical, medical, and disability rights perspectives. 

Chapter three will talk about legal and policy considerations. 

Conclusion will be recommendations that have been provided by members of the 

listening sessions and interviews. 
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Other recommended areas were as follows: 

• Recommended disability core competency and anti-ableism training for medical and 

genetics professionals who are discussing disabilities as a potential on a life course 

and providing training for scientific professionals; 

• Participants recommended disability rights education for people with disabilities 

themselves to advocate in the fields of science, genomics and medicine; 

• Many participants cautioned about the potential for repeating mistakes of the 

eugenics are, where people with disabilities lives were devalued by those perceived 

scientific experts; 

• Participants emphasized the importance of maintaining access to health equity if the 

technologies are agreed upon by consensus; concern arose around people with 

disabilities who are poor and/or experienced racial discrimination being able to get 

advanced fetal surgery or genomics in a health system which is also disparate; 

• Spoke on the importance of social determinants of health and the community and 

social supports; 

• Participants mentioned concerns about security and privacy of genetic information if 

genome editing is available and discrimination people with disabilities could 

experience if their conditions are perceived as avoidable; 

• Importance of consent under the guidelines of the report. 

H. Clinical Trials Report 

Ms. Julie Sowash, Executive Director, Disability Solutions stated they are about 14,000 

community-based organizations that work with around the world to help drive 

information, especially in employment and companies hiring people with disabilities 

around the world. 

Ms. Sowash spoke on the patients journey through a clinical trial and some of the 

common barriers from participation for people with disabilities and discussed 

opportunities to increase participation through data collection and universal design 

principles and policy changes. 

Ms. Sowash reported that they have been working with Bristol Myer and other incredible 

experts in the pharmaceutical and IRB communities and with healthcare organizations. 

Ms. Sowash suggested recommendations were as follows: 

• NIH and FDA to publish and distribute information about trials requiring that all 

patent-facing media, included but not limited to consent forms, websites are made 

accessible; 

• Recommend that healthcare providers running trails should be trained on disability 

and inclusion; 

• Teaching cultural competency; FDA to set standards for IRB boards to evaluate 

disability diversity competency study teams; 

• Establish appropriate health literacy and reading level checks conducted by IRD’s as 

a standard practice; 
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• Reducing subjective eligibility criteria if possible; 

• Suggest that teams that are writing protocol address decision making capacity 

requirements within the eligibility criteria; 

• Provide scientific justification for exclusion criteria and not allow the continuation of 

no exclusion; 

• Need for better disability cultural competency training and a better understanding of 

the heterogeneity of the disability community; 

• Acknowledging that there are misconceptions regarding cognitive ability that are 

applied regularly to all types of disabilities; 

• FDA and Institutional Review Boards be required to include people with disabilities in 

their efforts, and develop guidelines specific to people with disabilities; 

• Studies should be trained about consent and assent procedures with all consent 

documents and processes and procedures should be bult with inclusion in mind; 

• Encouraging leaders to think of a clinical trial as an experience. 

I. Progress Report Update 

Ms. Ramonia Rochester, National Disability Institute. She stated that the report looked 

at the impact on access limitations on people with disabilities with a view toward 

creating economic security. Specifically focused on whether the current states and 

programs can provide to create economic dependency. The first order of business was 

to define a basis on views from the disability community. 

Ms. Rochester submitted the following highlights of the report. They were as follows: 

• Looked at studies that discuss the impact of modifying versus eliminating asset 

limits; 

• Looked at age of population; 

• Healthcare; 

• Medicaid; 

• Cash assistance through SSI; 

• employment-specifically the Workforce Innovation Opportunity Act; 

• Looked at the Council’s recommendations in its 2015 report as well as 

recommendations across healthcare and employment to make a comparison; 

• Asset building and wealth protection program policies; 

• Identifying states that are involved in best practices (Massachusetts, Virginia,

Mississippi); 

• Examining states with a higher rate of disability, percentage of poverty with a 

significant percentage of the disability population; 

• Identifying states with large Medicaid programs or no Medicaid expansion 

program; 

• Including national and state policy. 
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Ms. Lydia X.Z. Brown, director of policy, discussed the findings regarding SSI and 

healthcare. 

Ms. Brown said the SSI program is particularly important for many of the poorest of 

people within the country. 

Ms. Brown highlighted the following recommendations. They were as follows: 

• Implementing a national coordinating system; 

• Better integrating of benefits application and navigation for many safety net 

programs; 

• Recommend Medicaid to remove the asset and age limits that are currently imposed 

in Medicaid covered services; 

• Remove penalties that penalize people with disabilities who are married to other 

benefits recipients; 

• Introduce premiums in order to make Medicaid coverage more affordable and 

accessible to a wider range of people; 

• Funding research in the pathways for eligibility for Medicaid other than being 

qualified for SSI. 

Ms. Dahlia Shaewitz, CEO, Third Sight discussed employment and spoke on 

competitive integrated jobs which is the number one way for people with disabilities to 

achieve financial independence. 

Ms. Shaewitz’s recommendations and reporting were as follows: 

• state agencies receiving federal and state funds need to be held accountable for 

serving people with disabilities to help them achieve the education and the 

certification of the job; 

• all public facilities to be fully accessible; 

• subminimum wage and sheltered workshop and removing subminimum wage 

nationally; 

• ensuring that people with disabilities understand their benefits, understand basic 

financial planning tools and processes, and understanding hoe w to balance benefits 

with earnings; 

• workforce access and accommodations and how the pandemic impacted an all 

workers with the employment rates of people with disabilities recovering quickly 

during the recovery; 

• technology access and access to broadband. 

Ms. Rochester shared concluding thoughts on the project which were as follows: 
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• last point of discussion was around asset building and wealth protection for 

individuals with disabilities; 

• looked at the issue of the ABLE Act 

• 67% of the disability population are chronically financially unhealthy; 

• Financial literacy and lack of information across providers; 

• Medical recovery rules for individuals who are actually able to save; 

• Making ABLE to work permanent, allow individuals who are employed to contribute 

directly from their wages to ABLE accounts; 

• Research into the reasons for the low uptake currently; 

• Strategic education and outreach to promote understanding of how these public 

these public benefits; 

• Financial education and training, including a national technical assistance center for 

both direct service providers as well as for individuals and family members with 

disabilities on how to navigate ABLE and other kinds of asset busing and wealth 

protection programs that currently offer a safety net for individuals with disabilities. 

MOTION: Chairman Gallegos moved to recess the Council meeting for the evening 

and to resume tomorrow’s Council business tomorrow. 

SECONDED: Sascha Bittner 

Roll Call Vote: 

Andres Gallegos, Chairman: Aye 

Sascha Bittner: Aye 

Theo Braddy: Aye 

Shawn Kennemer: Aye 

Emily Voorde: Aye 

Risa Rifkind: Aye 

Motion Passed Unanimously 
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July 13, 2023 

10:00 am -12:13 pm ET 

A. Call to Order 

Chairman Gallegos called and resumed the Council meeting at 10:00 am et and 

conducted a roll. 

B. Acceptance of the Agenda 

MOTION: Emily Voorde moved for the acceptance of the May 4, 2023, Council meeting 

minutes. 

SECONDED: Sascha Bittner 

Roll Call Vote: 

Andres Gallegos, Chairman: Aye 

Sascha Bittner: Aye 

Theo Braddy: Aye 

Shawn Kennemer: Aye 

Emily Voorde: Aye 

Risa Rifkind: Aye 

Motion Passed Unanimously 

C. Update on Administration, Finance and Operations 

In Ms. Grubb’s absence, Mr. Woods reported the following: 

• Changing accounting vendor to the Department of Transportation from USDA and 

have a meeting with them after this meeting; 

• Reduction of office space from 1,750 square feet, meeting with GSA after this 

meeting. 

D. Legislative Affairs Specialist 

Ms. Eacobacci reported the following: 

• The Council celebrated the 35th anniversary of the Americans with Disabilities Act 

last evening with a reception and in attendance were Hill staff and HUD, HHS, 

FEMA and other federal agencies; 

• Fireside chat with the original author of the ADA Bob Burdorf; 

• Speeches from Speaker of the House Kevin McCarthy as well as Senator 
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• Duckworth; co-chairs of the Bipartisan Disabilities Caucus stopped by and sent 

messages as well; 

• House Ways and Means committee and the Commerce Committee advanced the 

protecting healthcare for people acts; 

• HR 485 is currently pending budgetary score in the Congressional Budget Office 

before the House majority leader can bring it to a floor vote; 

• HR 485 advances NCD’s 2019 and 2022 report cautioning policymakers about the 

use of quality-adjusted life year-based cost effectiveness analyses for determining 

the value of prescription drugs and other health interventions; 

• Jointly met with the policy director for the Senate Health, Education, Labor, and 

Pensions Committee; 

• NCD policy staff and I met with the House Energy and Committee staff regarding 

questions regarding NCD’s reported some of the recommendations from the impacts 

of extreme weather events on people with disabilities and our COVID-19 report; 

• Discussion about reauthorizing the pandemic and All-Hazards Preparedness Act. 

Mr. Nick Sabula reported the following: 

• A large media on NCD’s extreme weather and incentivizing oral healthcare reports; 

• Joan Durocher and I met with the delegation from Tajikistan to talk about their policy 

and work they have been doing on CRPD for the UN; 

• Policy briefing on extreme weather conditions; 

• Expansion of NCD’s social media with our LinkedIn account passing 10,000 with 

76,000 followers across social media; 

• Focused on community feedback and listening from the disability community on 

things that need improvement. 

E. Policy Update 

Joan Durocher listed the projects that are underway and Council members spoke on 

them. 

Health Equality Framework 

Chairman Gallegos reported the following: 

Chairman Gallegos stated the framework was revealed in February 2022 the Council 

has continued to try and get the core components implemented. Being as follows: 

• Designation of all people with disabilities as an underserved population; 

• Adoption of enforceable accessible medical diagnostic equipment standards; 

• Enhanced data regulation; 

• Implementation/adoption of model healthcare disability clinical care curriculum. 

Clinical Trials 

Ms. Emily Voorde determined that there was nothing to add following yesterday’s 

presentation. 

Congregate Settings and Transition, Home and Community-Based services 

Ms. Sascha Bittner reported the following: 
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• NCD released the report entitled, “Strengthening the HCBS Ecosystem: Responding 

to Dangers of Congregate Settings.” The report focused on the need to address the 

direct care worker shortage that worsened during the pandemic and threatened to 

institutionalize or re-institutionalize people with disabilities who rely on and unable to 

fund personal care services in the community; 

• June NCD submitted detailed comments to the Centers for Medicare and Medicaid 

Services on its proposed rule to increase access to home-and community-based 

services. In the prosed rule, CMS proposes changes to address the direct care 

worker shortage including increasing the salary of direct care workers under 

Medicaid and creating new requirements on maintaining and reporting waiting list 

information; 

• Housing-NCD staff are currently drafting comments to respond to HUD’s proposed 

rule to update its Section 504 regulation which prohibits discrimination against 

people with disabilities by federally assisted housing providers; 

• Two federal agencies are taking action to address barriers to community living that 

the Council focused on in its recent HCBS report. 

2023 Progress Report 

Mr. Amged Soliman reported the report is undergoing a technical review and one last 

edit with a release date by the end of the fiscal year. 

Tax Policy Project 

Ms. Kimie Eacobacci stated the definition of employee under the FLSA does not 

guarantee the definition of employ for federal employment tax purposes. The Council is 

interested in how it affects employment benefits and employer-sponsored benefit plans. 

Tribal Land Coordination Committee 

Mr. Hoskie Benally reported the following: 

• 2019 the Council signed an agreement with the National Indian Council on Aging to 

update its 2003 report; 

• Completed report in March is 300 plus pages containing resources for Native 

Americans with disabilities; 

• Recently, NCD agreed and approved funds for Executive Order which would be 

conduct a town all meeting in Indian country and where people will provide their 

experiences as a Native American with a disability. 

HEAD’s Up Act 

Ms. Bittner reported the following: 

• NCD report designates people with I/DD as a special medically underserved 

population under the Public Health Service; 

• NCD conducted research to determine how many people such a law would affect in 

hopes that such information could be obtained so Congress could move forward. 

Quality-Adjusted Life Years Project 

Mr. Shawn Kennemer reported the following: 
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• 2019 the Council issued a report calling for a ban on the quality-adjusted life year 

(QALY). Due to its discriminatory nature, the Council found that the use of QALY in 

standard cost-effective analysis has a discriminatory design and impact in that it 

undervalues prescription drugs that extend the lives of people with disabilities and 

has the potential to result in restricted insurance coverage; 

• 20232 NCD released a follow-up QALY report describing less discriminatory or 

nondiscriminatory methods to put a value on prescription drugs that can be used by 

government health programs i.e., Medicare and Medicaid; 

• Protecting Health Care for All Patients Act has been introduced in the US House of 

Representatives. The bill seeks to prohibit the use of QALY by all state and federal 

healthcare systems. Staff continue to track the progress of the bills. 

F. Chairman’s Report 

Chairman Gallegos reported the following: 

• 2010 the Access Board was required to develop technical standards for the 

manufacture and design of medical diagnostic equipment i.e., wheelchair accessible 

weigh scales, examination tables, X-ray machines, MRI machines and other 

diagnostic equipment; 

• Department of Justice and Department of Health and Human Services Office of Civil 

Rights will be releasing standards in September rulemaking on Section 504 specific 

to the standards developed by the Access Board; 

• the Council’s comments have been reflected in the background of these regulations; 

• honoring ceremony of Bob Burgdorf. 

Executive Committee Report 

Mr. Kennemer asked the Council to review and accept the spending plan and status of 

funds report for fiscal year 2023 through May 31, 2023. 

Mr. Kennemer stated the Council’s appropriated funds for FY ’23 is $850,000 which 

46% was expended as of May 31, 2023. $44,500 reallocated to policy and other areas, 

reallocating $20,000 from Council member salaries to meetings and conferences and 

then reallocating $4,500 from local travel. 

Mr. Kennemer there is an additional $20,000 needed for travel and we recommend that 

the amount from contractual services. $1,00 is needed for security services. 

MOTION: Sascha Bittner moved for the approval of the status of funds report through 

May 31, 2023. 

SECONDED: Hoskie Benally 

Roll Call Vote: 

Andres Gallegos, Chairman: Aye 

Sascha Bittner: Aye 

Theo Braddy: Aye 

Shawn Kennemer: Aye 
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Emily Voorde: Aye 

Risa Rifkind: Aye 

Motion Passed Unanimously 

Mr. Kennemer presented the following allocations for a vote. 

$20,000 from contractual service to paroling travel; 

$20,000 from member salaries to program travel; 

$4,500 from local travel to program travel and ; 

$1,000 from contractual services to security services 

MOTION: Emily Voorde moved for the approval of the allocations as presented. . 

SECONDED: Sascha Bittner 

Roll Call Vote: 

Andres Gallegos, Chairman: Aye 

Sascha Bittner: Aye 

Theo Braddy: Aye 

Shawn Kennemer: Aye 

Emily Voorde: Aye 

Risa Rifkind: Aye 

Motion Passed Unanimously 

Mr. Kennemer asked for a final vote for the recommendations to give the executive 

committee the determine a reallocation for $20,000 that is available for meeting and 

conferences to policy work and/or government publishing office, the GPO deposit 

account for agency editing, printing needs from fiscal year ’24 based upon the further 

input from the management team at the next executive committee meeting following this 

council meeting. 

MOTION: Sasha Bittner moved for the approval of the recommendations to give the 

executive committee the determine a reallocation for $20,000 that is available for 

meeting and conferences to policy work and/or government publishing office, the GPO 

deposit account for agency editing, printing needs from fiscal year ’24 based upon the 

further input from the management team at the next executive committee meeting 

following this council meeting. 

SECONDED: Theo Braddy 

Roll Call Vote: 

Andres Gallegos, Chairman: Aye 

Sascha Bittner: Aye 

Theo Braddy: Aye 

Shawn Kennemer: Aye 

Emily Voorde: Aye 

Risa Rifkind: Aye 
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Motion Passed Unanimously 

G. Governance Committee Reports 

Ms. Bittner stated that she is memorializing the approval of the electronic vote of the 

Councill to close the meeting held on June 15, 2023. 

Ms. Bittner reported as follows: 

• The bylaws are reviewed every few years to ensure that they are still relevant and 

that no changes are needed, with the latest version updating some areas showing a 

15-member ; 

• First quarterly meeting of each calendar year the Council shall actively solicit input 

from the disability community including but not limited to individuals with disabilities; 

• Representatives of organizations representing a broad range of individuals with 

disabilities, and organizations representing a broad range of individuals with 

disabilities; and 

• Organizations and agencies interested in individuals with disabilities to identify and 

prioritize the issues and concerns affecting the disability community; 

• The council will consider the input received from the community during the meeting 

and engage in the deliberative process to determine the topic for the progress 

report. 

• Few substantive changes that reflect how the Council operates; 

• Executive committee revised section on selection policy reports and the annual 

progress report; determined topic for the progress report should be based on the 

issues and priorities identified by the disability community as well as the Council’s 

assessment of the significance, urgency, and impact of those issues. 

Ms. Durocher proposed the following processes in regard to policy reports. They were 

as follows: 

• The executive committee shall determine with input from the Executive Director and 

agency staff the number of additional policy report; 

• If the executive committee votes to approve the development of one or more policy 

reports in addition to the progress report, each Council Member shall have the 

opportunity to submit one or more proposal topics for policy reports that the Council 

can author during the next year; 

• Council members are first to consult the disability community when arriving at these 

topics to ensure that the reports are responsive to the needs and concerns of the 

disability community; 

• The proposals shall be submitted in writing to the chairperson and director of policy 

in a format as selected by the director of policy no later than the date established by 

the director of policy; 

• All proposals timely submitted shall be included in the meeting materials for the 

council quarterly meeting and disseminated to applicable staff; 

• At the council meeting, Council members will present the proposals to the Council 

Members for consideration and vote; 

• Pursuant to the voting requirements set forth in the bylaws, Council Members will 

approve one or more policy reports for the subsequent fiscal year. 
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MOTION: Theo Braddy moved for a vote to approve the amended bylaws changes 

as presented. 

SECONDED: Chairman Andres Gallegos 

Roll Call Vote: 

Andres Gallegos, Chairman: Aye 

Sascha Bittner: Aye 

Theo Braddy: Aye 

Shawn Kennemer: Aye 

Emily Voorde: Aye 

Risa Rifkind: Aye 

Motion Passed Unanimously 

H. Council Member Report Outs and Outreach 

Chairman Gallagos asked Council Members to give their activity’s report since the last 

Council meeting. 

Mr. Braddy reported the following: 

• Many comments are from the disability community regarding consumer control. A 

number of constituents are feeling that a substantial number of federal agencies are 

not seeking input from the disability community; 

• ACL, the aging community, and other departmental agencies are doing things 

without seeking input from people with disabilities. 

Ms. Bittner reported the following: 

• Her work with the California Council on Disabilities and regional centers, selfdetermination committee for people with developmental disabilities, are focusing on 

how to create more opportunities for self-direction and control for people with 

developmental disabilities and to develop methods of quality assurance that 

meaningfully include them; 

• Main goal of the program is to give clients control over resources allocated to them 

by the regional centers of California and the program has achieved notable 

successes but has also experienced growing pains in terms of the new financial 

n=management services given the new rules including co-employers; 

• Critical shortage of home care providers; governing board is looking to create public 

service announcements for worker recruitment; 

• Increasing alarm among many disability advocates in efforts to gut diversity, equity, 

and inclusion programs. 

Ms. Voorde reported the following: 

• Community’s concern of COVID-19 reaming a massive thing; 

• Concern of the immunocompromised of color and impoverished communities are 

being forced to shoulder this burden. 

Mr. Benally reported the following: 
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• Information has been submitted on the things that the Indian community is lacking; 

• Many of the Native Americans with disabilities end up unnecessarily in nursing 

homes due to the lack of housing; has increased since COVID; 

• Housing is a big issue. 

Ms. Rifkind reported the following: 

• Concern amongst the community regarding with the Supreme Court decision on 

overturning Roe V. Wade 

Mr. Kennemer reported the following: 

• Lack of benefit coordination with knowledge of how the SSI system works or staff in 

the social security department providing incorrect information for individuals that are 

working and wanting to retain more hours; 

• Barriers in finding employment opportunities for individuals that we serve in 

maintaining those positions; 

• Direct care staffing shortage; 

• Waiting list of individuals wanting employment 

Chairman Gallegos reported the following: 

• Since the enactment of the civil rights statute in 1964, courts throughout the country 

have consistently recognized if an individual is deprived of their civil rights, 

discriminated because of their color, race, gender, religion and now disability, the 

emotional distress automatically follows; 

• A small group of civil rights attorneys and disability rights attorneys have convened 

in Illinois to discuss what can been done at the state level resulting in a draft bill. 

I. Old/New Business 

Ms. Lewis gave a brief review of the reimbursement process. She stated it is federal 

policy that your reimbursement be submitted within five days after your travel. Travel 

days are defined as departure day from the traveler’s residence or official duty location 

and the return date of the traveler’s residence of their official duty station. 

J. Adjournment 

MOTION: Chairman Gallegos moved to adjourn the Council meeting. 

There was not second to the motion. 

The meeting adjourned at 12:15 p.m. (ET) 

Date Approved by the Council: 

Signature 

Printed Name 

 Claudia Gordon