President’s Committee

for People with Intellectual Disabilities (PCPID)

Committee Meeting

November 8-9, 2018 

~Minutes~ 

Citizen Members

Chris G. Neeley, Chair Claudia B. Horn

Vijaya Lakshmi Appareddy Stephanie Hubach

Olegario D. Cantos Annette Liike

Emily Colson Karen Moderow

Ex Officio Members and Representatives

Clarette H. Yen Carol Dobak

Representing the Honorable Jeff Sessions, 

Attorney General, U.S. Department of Justice

Representing the Honorable Betsy DeVos

Secretary, U.S. Department of Education 

Jennifer Sheehy and Andy Ariasand 

Representing the Honorable Alexander 

Acosta, Secretary, U.S. Department of Labor 

Monique Dismuke

Representing the Honorable Wilbur Ross, 

U.S. Department of Commerce 

Leola Brooks and Elisa Walker

Representing Acting Commissioner Nancy A. 

Berryhill, US Social Security Administration

Brian S. Parsons, Representing the Honorable 

Kirstjen Nielson, Department of Homeland 

Security

Martin Pursley

Representing the Honorable Ryan K. Zinke, 

Secretary of the US Department of Interior
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The Administration on Disabilities (AOD) - PCPID Staff

Julie Hocker, Designated Federal Official, PCPID

Allison Cruz, Director Office of Innovation, Administration for Community Living

Sheila Whittaker, Management Analyst, Office of Innovation, Administration for Community 

Living

Jennifer Johnson, Deputy Director, Administration on Intellectual and Developmental 

Disabilities, Administration for Community Living

Guest Speakers in Attendance

Lance Robertson, Administrator, Administration for Community Living

Mary Lazare, Principal Deputy, Administration for Community Living

Charles McEnerney, Director, Executive and Scientific Resources Division, US Department of 

Health and Human Services (HHS)

Dr. David Michael Mank, University of Indiana, on Barriers and Opportunities to the 

Employment Landscape

Dr. John Butterworth, University of Massachusetts, on Trends in the Employment of Individuals 

with Intellectual Disabilities

Debra Hart, University of Massachusetts, on Post-Secondary Education as a Path to Employment

Trent Morse, White House Liaison, HHS

Sara Frattone, Attorney, HHS

Sandy Jordan, Director of Employment Programs

Jenny Spaeth, Special Assistant for Boards and Commissions, HHS

Steve Hagy, Director, Office of Budget and Finance, ACL,

Kenny Moss, Program Analyst, Office of Budget and Finance, ACL

Anastasia Lowery, Program Analyst, Office of Budget and Finance, ACL
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The PCPID Meeting Proceedings

Welcome, Greetings, Introductions, and Statement of Occasion

Mary Lazare

Principal Deputy Administrator for the Administration for Community Living

Ms. Lazare welcomed participants to the fall 2018 meeting and called the meeting to order, then 

handed the meeting over to the chair for the PCPID, Christopher Glenn Neeley, Chair and the 

Executive Director of the Meyer Center for Special Children.

Introductions

Christopher Glenn Neeley

Chair

Chairman Neeley welcomed participants, thanked the members present, and explained his own 

professional and personal interests and inspiration for participating on the Committee. The rest of 

the Committee introduced themselves, the entities which they represented, as well as their own 

profession and personal interests in the activities of the Committees, most of which included 

knowing or being related to someone with an intellectual disability.

Charles McEnerney swore in new members and a group photograph was taken of those present.

Remarks from the Health and Human Services (HHS) White House Liaison

Trent Morse

White House Liaison, HHS

Ms. Lazare introduces Mr. Trent Morse, White House Liaison to Health and Human Services.

Mr. Morse details the role of HHS in determining public policy and opening discussions for 

those with disabilities. He requested direction on who the Committee would like to hear from 

and who should be involved in the activities and decisions of the Committee in order to 

accurately represent the variety of viewpoints regarding intellectual disabilities. He introduces 

Julie Hocker, who is the Commissioner of the Administration on Disabilities.

Mr. Morse describes his role as White House Liaison and reminds those on the Committee that 

all of their activities are criticized so it is important that they behave morally and ethically, even 

outside of the office. He moved on to explaining the priority of creating employment 

opportunities. He asks for feedback and ideas on improvement during the meeting.

At this point, Ms. Colson suggests including someone with intellectual disability in these 

discussions and active in the committee. This was seconded by Ms. Hubach. Mr. Morse requests 

names of individuals for consideration.
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Ethics Training

Sara Frattone

Attorney, HHS

Ex-Officio members and public are dismissed from the meeting for 40 minutes during which 

there is no record of proceedings.

Explanation of Administration for Community Living (ACL)

Lance Robertson

Administrator, ACL

Mr. Robertson explains the mission and purpose of the ACL, primarily finding means of 

including people with disabilities and older adults into society. More information can be located 

on the agency website, acl.gov. He emphasizes the importance of the Five Pillars essential to the 

functioning of the ACL, primarily related to employment. He encourages the Committee to reach 

out to Dr. Michael Marge (phonetic), who was not present but is spearheading a currently 

unpublicized effort to increase employment and further the Five Pillars of the ACL. Mr. 

Robertson closes his remarks by emphasizing that the resources and information of the ACL are 

open to the Committee.

Federal Advisory Committee Act (FACA)

Jennifer Spaeth

Special Assistant for Boards and Commissions, HHS

Ms. Spaeth explains that FACA “governs any board, commission, council, conference, panel, 

etc. that is established by the law, the President, or an Executive Branch agency to obtain advice 

and recommendations.” FACA requires input from “people from the outside” and transparency 

in above-mentioned entities’ activities so that the public can see that they still have influence and 

that government leaders are not making arbitrary decisions.

Ms. Spaeth reviews the history and purpose of FACA as an effort to maintain practices that 

promote the best interests of the groups for which the Committee exists and for the public. She 

re-emphasizes Mr. Morse’s point that the Committee members’ behaviors and actions are 

constantly watched and criticized. FACA helps hold individuals accountable for their actions and 

words. She reminds the Committee that their role is only that of an advisor, not a decisionmaking entity. Violating FACA could influence the credibility of the Committee and therefore 

make the Committee’s recommendations have less weight. She explains the specific roles of Ms. 

Hocker and Mr. Neeley.

Travel Procedures

Steve Hagy, Anastasia Lowery, and Kenny Moss

Office of Budget and Finance, ACL
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Ms. Lazare updates the meeting agenda by moving the travel discussion forward.

Mr. Hagy explains that he wants to make sure the Committee members can focus on the 

purposes of the meetings, not on any issues regarding traveling to the meeting. He introduces 

Ms. Lowery and Mr. Moss as the primary sources of information for questions and Ms. 

Whittaker as the primary contact for Committee members. He explains the structure and internal 

functioning of his office. Ms. Whittaker will help make the travel arrangements. Each Committee 

member receives $76 per diem but $57 for the first and last days of the meeting. You do not need 

food receipts but the Office does require receipts for any other necessary purchases made during 

official duty, such as hotel, ground transportation, etc. He left the Committee with Ms. 

Whittaker’s direct line, (202) 795-7359. Please send everything to Ms. Whittaker in a timely 

manner and all together. Mr. Moss offered his direct line for questions as well, (202) 795-7274.

Overview of PCPID Alignment within HHS, Administration on Disabilities

Mary Lazare

Principal Deputy, ACL

ACL was founded in 2012 and is composed of both the Administration on Disabilities and the 

Administration of Aging. In 2015, the National Institute on Disability, Independent Living, and 

Rehabilitation Research (NIDILRR) which is a combination of experts from different 

backgrounds. The mission of the ACL is “to enhance the health, well-being, and independence of 

older adults and people with disabilities and their families and care-givers.” The agency has the 

purpose of being involved and inclusive but also to encourage and motivate.

The ACL aims to help those with disabilities to make supported decisions. It also provides grants 

to states, tribes, non-profit organizations, educational institutions, universities, and other 

organizations with the same goals as the ACL. Ms. Lazare re-emphasizes the role of the ACL in 

advising the President and Congress in making decisions regarding people with disabilities.

Call to Order

Mary Lazare

Principal Deputy, ACL

Ms. Lazare called the meeting to order and announced that the order of speakers would be 

altered in order to wait for Ms. Cruz to arrive.

Welcoming Remarks, Meeting Overview, and Approval of Agenda

Christopher Glenn Neeley

Chair

Mr. Neeley emphasizes the importance of the different points of view and diversity of 

backgrounds of Committee members. He gives a special thanks to Ms. Whittaker, Ms. Lazare, 

Mr. Robertson, Ms. Spaeth, and Ms. Hocker.
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Mr. Neeley introduces Ms. Johnson to the Committee. Ms. Lazare introduces Mr. Andrew 

Morris, Mr. Rohmteen Moktari, and Ms. Leslie Kaplan all staff of ACL also attending the 

meeting and providing assistance.

Mr. Neeley brings up the main agenda of the Committee in helping people with disabilities to 

find gainful employment in the growing economy. He wants to see a change in the idea of people 

with disabilities being limited in their abilities to work, and their skills. The Committee will 

examine and discuss the report and employment beginning with the employment landscape, 

barriers and opportunities, trends in the employment of people with intellectual disabilities, and 

post-secondary education as a path to employment. November 9th will be for further discussion 

and beginning plan development.

Discussion of 2019 Report: Employment

Mary Lazare

Principal Deputy, ACL

The Fiscal year began October first. The annual report on employment is key this year because 

of the low unemployment rates and more companies are practicing, or wanting to practice, 

inclusion for those with disabilities but they need guidance and advice on how to do so.

PCPID Report to the President Procedures Manual

Allison Cruz

Director, Office of Innovation, ACL

Ms. Cruz outlines the manual that Committee members received via email and in their 

attendance packets. She reiterates the strictly advisory role of the Committee.

Employment Topic 1: The Employment Landscape: Barriers and Opportunities

David Michael Mank, Ph.D.

Professor Emeritus at Indiana University

Mr. Neeley introduces Dr. Mank who has participated in researching and writing about the 

education and employment of people with disabilities. Dr. Mank explains that finding a decent 

job is a priority among those with disabilities. Society has changed its perspective to one in 

which the general populace has realized that people with intellectual disabilities can contribute in 

the workforce, to the point that many organizations are trying to find ways to hire people in this 

demographic. Dr. Mank’s goal is “competitive, integrated employment, which means full or part 

time at minimum wage or higher, with wages and benefits similar to those without disabilities 

performing the same work and fully integrated with co-workers without disabilities.”

Organizations developed to help people with disabilities to find employment need to provide 

support and resources for clients to compete in employment. Investment into these programs has 

been led by community advocates and states, not the federal government. More federal money is 
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invested in maintaining segregating people with disabilities than including them. Helping a large 

number of people with disabilities is a challenge in that each individual has their own needs and 

abilities. It takes a lot of time and resources to help each person. Inter-agency work is essential in 

this which includes the vocational rehabilitation and intellectual and developmental disabilities 

agencies in each state. Accomplishing these goals requires a revamp of these agencies and a 

change in society’s perspective of providing a safe place for people with disabilities to go during 

the day to creating an inclusion-based society with gainful employment for people with 

disabilities.

Employment Topic 2: Trends in the Employment of Individuals with Intellectual Disabilities

John Butterworth, Ph.D.

Director of Employment Systems Change and Evaluation, et al.

Dr. Butterworth had three main points to discuss. First was a project on employment outcomes 

and services funded by the Administration on Intellectual and Developmental Disabilities. This 

would include a database that tracks the work of the Committee and its outcomes. Second, Dr. 

Butterworth wants to develop skills and technology that better enables communities to support 

those with disabilities who are seeking work. Lastly, Dr. Butterworth sees a need for changes in 

state agency policy and strategy.

Currently, only about 20% of people with disabilities who received employment support from 

the states are in integrated employment; 12% in competitive integrated jobs; and 6% in group 

supported jobs. In the past ten years, there has been about 12% growth in the number of people 

working in the integrated employment areas.

There are many challenges that inhibit growth such as funding, facilities, and the market. Data 

charts and graphs are broken down with different criteria to demonstrate the issues related to 

different demographics within the population of people with disabilities.

Employment Topic 3: Post-Secondary Education as a Path to Employment

Debra Hart, Ed.M.

Director of Education and Transition, Institute for Community Inclusion

Dr. Hart opens by emphasizing the importance of funding for the AIDD and ACL. The 

Department of Education began working with AIDD in order to provide training and assistance 

to the supporting individuals and groups on adapting post-secondary education for people with 

disabilities. This developed into “Think College” on thinkcollege.net. The website provides 

resources and directories for programs that help people with disabilities in post-secondary 

education. Think College provides training to help educational institutions transition to become 

more accommodating for people with disabilities. Dr. Hart discusses examples in which the 

Think College models have been applied and the successes of the programs as well as the 

struggles faced when implementing the models.
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Employment Topic 4: Employment Panel – Perspectives from Experiences Individuals with 

Lived Experiences

Liz Weintraub

Senior Advocacy Specialist

Association of University Centers on Disabilities

Ricardo Thornton

Vice Chairperson

Washington, D.C. Developmental Disabilities Council

Ms. Weintraub described her experiences as someone with a disability in the workforce. She is a 

self-made lobbyist for others with disabilities. She expounds on the fulfillment she finds in 

having what she considers a real and meaningful job. She talks about her own feelings of pride 

and value in doing what she wanted to do and demonstrating that having a disability does not 

have to limit a person. One of Ms. Weintraub’s primary concerns is in the lack of understanding 

of people with disabilities and, in particular, an unawareness of the individual masked by the 

disability. She seems to say that a disability should not determine the job a person has. A person 

should be defined by their role through their job, not by their disability.

Mr. Thornton discussed his own experiences being institutionalized. He talked about the 

overmedicating and death of his sister which inspired him to become an advocate for those with 

disabilities. He wanted to seek accountability for those in charge of the institutions and justice 

for those abused in said institutions. He described the injustices he felt at his various jobs and in 

his goal to marry his now wife, Donna. In these stories, he talks about the prejudices that people 

had against him and his wife, even those who were tasked with trying to help them acclimate and 

integrate into everyday society like social workers. He talks about how he and his wife overcame 

these obstacles to become advocates for themselves and others with disabilities.

Employment Topic 5: Panel – Perspectives from the Field

Chip Woods

Executive Director

Saint Peter’s Adult Learning Center

Sandy Jordan

Director of Employment Programs

Able, South Carolina

Mr. Woods believes that “work is good.” He has experience in for-profit and non-profit agencies 

that help people with disabilities find employment. He believes that when people with disabilities 

have employment, they feel value and agency in their lives. Unfortunately a lack of skills and 

money allows the easy dismissal of people seeking jobs. He emphasizes the need for real-life 

experience based education for everyone, including those with disabilities, not just academics.

This is his goal at St. Peter’s. They bridge the gap in communication between what businesses 

want in their employees and the skills taught to potential employees. Policy changes need to 
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occur to bring the employment of people with disabilities up from 19-20%. Society must 

recognize those within the discussed group as individuals and people and that they can contribute 

to society too. Statistics are important in determining results. Having numbers-driven incentives 

will help change policy and increase employment of people with disabilities. Work must be 

gainful and people must be properly trained for the jobs.

Ms. Jordan works in an organization that has 80% employment of people with disabilities. Fifty 

percent of the board are people with disabilities. It is the only organization led by people with 

disabilities working with a grant from ACL. They have created a peer-to-peer business model 

called Disability:IN. This is in order to have businesses help other businesses in the acceptance 

of hiring and actual hiring of people with disabilities. It causes employers to re-examine actual 

modern job requirements in order to open the positions to a broader population base. The 

Committee should be looking at both how to develop new practices and ideas and what is already 

available and how it can be adapted.

PCPID Discussion of Report

Christopher Glenn Neeley

Chair

Chairman Neeley opens the floor for discussion of topics to put in the report to the President.

They are as follows: shifting from shelter workshops to community-based experience; 

employment of people with disabilities in high school so that they maintain employment after 

high school; negotiating leverage deals to open door to “glass ceiling” businesses; better 

marketing to promote acceptance and employment of people with disabilities.

Announcements to the Committee

The Committee would like the recommendations of different agencies, as well as best practices, 

models, and opportunities. There will be a conference call December 5th at 10 a.m. The public 

can also make their own recommendations and express concerns to Ms. Whittaker. The 

Committee is also looking for candidates who are individuals with intellectual disabilities. Please 

send those recommendations to Ms. Whittaker.

The report is due by June 1st. There will be another Committee meeting in March. An email will 

be sent out after this meeting with a calendar of events. The Committee should start thinking 

about a consultant who can write the report to include the recommendations, justifications, and 

data to support. Committee members will be receiving the previous Committee’s report in email.

Adjournment

Chairman Neeley ended the meeting by quoting Senator Robert Kennedy, “Some people see 

things as they are and say why. And I dream things that never were and ask why not.” He 
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thanked everyone in attendance and wished them safe travels, reminding them of the conference 

call on December 5th at 10 a.m.