President’s Committee

for People with Intellectual Disabilities (PCPID) 

Zoom Platform Meeting 

May 1, 2023 

~Minutes~ 

Citizen Members (Present) 

James Brett, Chair

Shawn Aleong

Paul Aronsohn

Paul Boskind

Eva Bunnell

Kara Jones

Nicole Jorwic

Cathy Kanefsky

M. Brent Leonard

Joseph Macbeth

Gabriel Martinez

James Meadours

Lucy Meyer

Tia Nelis

Santa Perez

Nick Perry

Hillary Dunn Stanisz

Wendy Strauss

James Trout

Liz Weintraub

Jordyn Zimmerman

Ex Officio Members and Representatives (Present)

Katy Neas 

Representing the Honorable Miguel 

Cardona, Secretary, U.S. Department of 

Education 

Sasha Samberg-Champion 

Representing the Honorable Marcia Fudge, 

Secretary, U.S. Department of Housing and 

Urban Development 

Kelly Buckland 

Representing the Honorable Pete Buttigieg, 

Secretary, U.S. Department of 

Transportation 

Alyse Bass 

Representing the Honorable Merrick 

Garland, Secretary, U.S. Department of 

Justice 

Jodie Sumeracki 

Representing the Honorable Xavier Becerra, 

Secretary, U.S. Department of Health and 

Human Services 

David Mank 

Representing the Honorable Julie A. Su, 

Acting Secretary, U.S. Department of Labor 
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Brian S. Parsons 

Representing the Honorable Alejandro 

Mayorkas, Secretary, U.S. Department of 

Homeland Security 

Jennifer Ackerman 

Representing the Honorable Deb Haaland, 

Secretary, U.S. Department of the Interior 

Leola Brooks 

Representing the Kilolo Kijakazi, Acting 

Commissioner, U.S. Social Security 

Administration 

Larry J. Beat 

Representing the Honorable Gina 

Raimondo, Secretary, U.S. Department of 

Commerce 

Veta Hurst 

Representing the Honorable Michael Smith, 

CEO, Corporation for National and 

Community Service / AmeriCorps 

Joyce Walker-Jones 

Representing the Honorable Charlotte A. 

Burrows, Equal Employment Opportunity 

Commission 

Andrés Gallegos 

Chairman, National Council on Disability 

Guest Panelists providing Public Input 

(in order of appearance)

BJ Stasio, New York

Nguungwan (Victoria) Afa, Tennessee

Alton Stuckey, Rhode Island

Joshua Drywater, Arizona

Amanda Baker, Florida

Vance Taylor, California

Kira Meskin Schiff, Illinois

Patrice Jetter, New Jersey 

*Bryan Russell, Florida (joined larger panel discussion with Amanda Baker)

Administration for Community Living and Administration on Disabilities

Alison Barkoff 

Acting Administrator 

Administration for Community Living 

Jill Jacobs 

Commissioner, Administration on 

Disabilities 

Jennifer Johnson, 

Deputy Commissioner, Administration on 

Disabilities 

Sheila Whittaker 

Program Assistant, Administration on 

Disabilities 

David Jones 

Director, Office of Intellectual and 

Developmental Disabilities (OIDD), 

Administration on Disabilities 

Selvin Garcia 

Community Living Program Specialist, 

Administration on Disabilities 
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The PCPID Virtual Business Meeting Proceeding Overview

Call to Order, Welcoming Remarks and Meeting Overview 

Jim Brett, PCPID Chair 

Chairman Jim Brett called the PCPID meeting to order and welcomed the committee members 

and the public for joining the virtual meeting. Jim acknowledged that all 34 PCPID members 

registered their attendance to participate. Jim began his remarks outlining the history of the 

committee work to date. Following the full PCPID committee in July 2022, the committee 

reached consensus to focus on Home and Community Based Services (HCBS). The HCBS focus 

area was then broken down into four key areas in which workgroups were subsequentially 

established. They include: 

• Direct Support Professionals – This workgroup has been examining the DSP Labor 

Shortage crisis.

• Employment – This workgroup has been examining how employment of people with 

intellectual disabilities can be linked to advance competitive integrated employment in 

communities. 

• Community Living – This workgroup has been examining additional critical supports to 

promote independence and community inclusion such as Education, Housing, Health, and 

Transportation. 

• Federal Support Programs – This workgroup has been examining federal support 

programs such as Social Security and Medicaid. 

Since December 2022, the four PCPID workgroups met to reflect on each of the four topic areas. 

Jim thanked the nine PCPID workgroup co-chairs for their commitment to lead this national 

dialogue. Jim also thanked PCPID members that joined the workgroups. Jim proceeded to 

explain that today’s meeting goal was to collectively hear and reflect on the issues identified 

from each of the four workgroups. He noted that while multiple issues may have surfaced within 

each of the workgroups, they would drill down on one or two topical areas in which invited 

guests will share their experience or expertise. Committee members would then have an 

opportunity to ask the guest panel questions or share their thoughts with peers on the committee. 

Jim introduced Robin Levine, the facilitator for the PCPID Meeting. Robin has worked in the 

intellectual and developmental disabilities field over 35 years. Robin currently is a Program 

Manager with the Columbus Organization. Robin facilitates statewide stakeholder meetings for 

the Pennsylvania Office of Developmental Programs where she provides training to 

professionals on best practices as well as federal and state regulations. 

Welcome Remarks from Administration for Community Living 

Alison Barkoff, Acting Administrator, Administration for Community Living 

Alison Barkoff shared welcoming remarks. Alison’s remarks also incorporated statements from 

Administration on Disabilities Commissioner Jill Jacobs who was not able to participate. Alison 

observed that we are now marking six weeks since the HCBS Setting Rule was implemented on 

March 17th. She noted that the Settings Rule is seen as fulfilling promises of the Rehab Act, the 

ADA, and the Olmstead Decision to ensure basic civil rights. And, since the implementation, she 
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shared we must all work together to ensure the implementation is successful. The committee has 

a special role with this work to help further inform and educate. 

Alison highlighted the President’s April 18th Executive Order focused on caregiving. She noted 

that as we seek full compliance with the Settings Rule, we must also find new ways to solve the 

Direct Care Workforce crisis. Last fall, ACL launched the National Director Care Workforce 

Capacity Building Center to serve as a hub for collecting federal, state, and local best practices in 

recruitment, training, and wages to facilitate partnerships. 

Alison recognized the four PCPID workgroups for taking steps to identify major issues of 

importance to all who are dedicated to full inclusion of people with disabilities through 

community living. Alison thanked the committee members for their service and looks forward to 

learning from their combined wisdom.

Summary of Public Comments Received 

David Jones, Director, Office of Intellectual and Developmental Disabilities, Administration for 

Community Living

David Jones provided feedback to the committee members on the public comments received. 

Since the Federal Register Notice was posted on April 4th about the May 1st public meeting, ACL 

invited the public to share comments with the committee about HCBS or other issues. Between 

the posting date of April 4th and April 28th, there were six public comments received. David 

summarized those comments for the committee. 

Four of the commenters focused on advocating for Self Direction to ensure individuals with 

intellectual disabilities manage their own care and not be forced to live within an institution. 

They advocated Self Direction as the preferred HCBS placement. The commenters noted the 

operational barriers to effectively advance Self Direction within HCBS that were highlighted in 

David’s remarks. David also shared comments from two commenters noting the aging 

population in the U.S. and advised that Self Direction be made sustainable beyond a parent’s 

mortality and need more budgetary support. 

A fifth commenter focused on the Direct Support Professional Labor Force Crisis. The 

commenter noted that it has been extremely difficult to hire caregivers to provide quality one on 

one care and there are not any day programs in his community. The sixth commenter came from 

an individual with an intellectual disability who wanted to bring attention to the committee about 

dyslexia. The commenter noted that we are increasingly living in a world of email and texts that 

is not in plain English and this has hindered his efforts to find employment within his 

community. 

David shared that all comments received by ACL will be provided to the committee members in 

their entirety for their review. 

HCBS / Direct Support Professionals (DSP)

Workgroup Co-Chairs – Nicole Jorwic, Joe Macbeth, and Tia Nelis 

Tia Nelis opened the session and recognized the workgroup co-chairs and members of the DSP 

workgroup. Nicole Jorwic followed and provided an overview of issues surfaced by the 

workgroup ranging from low wages for DSP workers, limited technology solutions, marketing 
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and recruitment to expand the pool of workers, lack of professional standards, and lack of career 

ladders and credentialing opportunities. 

Joe Macbeth provided an overview of the role of the DSP within the national landscape and how 

it has evolved over time. Joe described the current workforce challenges and how workforce 

conditions deter progress with recruitment and retention. There has been a 43.3 percent annual 

turnover rate amongst DSP workforce. Joe highlighted how DSP is a highly skilled profession 

that serves in various roles from being a teacher, nurse, psychologist, occupational/physical 

therapist and counselor in this profession. Joe also observed how the role of the DSP workforce 

is evolving from historical perceptions to new ones in current environment. In moving forward, 

Joe acknowledged the importance of providing clarity about this work to employers and 

providers as well as the significance of having a common definition. 

Two guest panelists provided public input. 

BJ Stasio, New York

o BJ shared his experience as an individual with a disability and shared how DSP support 

impacted his life. As background, BJ is the co-Vice President of the Board of Directors of 

the Self Advocacy Association of New York state (SANYS) and has been employed by 

the New York Office for People with Developmental Disabilities for over 20 years, 

working on person centered planning, self determination training and education. 

BJ described how his experience during COVID-19 exacerbated the challenges with DSP 

staffing in his daily living. As a result, BJ was faced with a choice to either stay in bed or 

sleep in his chair in order to continue with his daily activities. He explained he made the 

tough choice to sleep in his wheelchair over two years during the pandemic so he could 

continue working. Currently, BJ has DSP services and grateful for their support each day 

so he can be more active within the community and help advocate for others. At the same 

time, BJ described how he has stopped strangers in grocery store asking if they would 

like to work as a DSP in supporting him due to labor shortage in his community. BJ 

shared that he is seeking a “hand up” to live the life he wants to lead and not looking for a 

handout from government. 

Nguungwan (Victoria) Afa, Tennessee

o Victoria shared her experience as a full time DSP for Core Services of Northeast 

Tennessee. Victoria has over 18 years of supporting people with intellectual and 

developmental disabilities and is currently in her final semester in a nursing degree 

program. 

Victoria shared that her experience as a DSP was a leading reason why she went back to 

nursing school. During the first three semesters, she felt she had more experience than her 

classmates stemming from her experience as a DSP to administer medications. Victoria is 

grateful for her job as a DSP since it provided real world experience while in school. In 

her experience as a DSP, she described one incident when she joined her client for a 

medical appointment. The doctor spoke directly to Victoria and not the individual she 

was supporting. From that situation, Victoria explained that it’s important to not 

underestimate people with intellectual disabilities and we must meet them where they are 

at with level of understanding in providing care. It’s a mistake to form judgement that 

applies to all. 
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Following the panel feedback, the floor was open for committee discussion. One member 

explained that calling DSP workers as caregivers does not provide the level of respect it 

deserves. Another member noted the value of having a high school pipeline through vocational 

training to learn what a DSP does in the labor force and be on healthcare track. Another 

recruitment pipeline that surfaced by member highlighted the need to examine the immigrant 

workforce. There was agreement that the future of community living is Self Direction and there 

is a need to support DSP workforce. And, there was strong committee consensus or recognizing 

the importance of person, incentive planning in HCBS, and making sure that individuals 

themselves are driving that process. 

HCBS / Employment 

Workgroup Co-Chairs – Eva Bunnell and Gabriel Martinez 

Eva Bunnell opened the session and reflected that many of the issues discussed in the first panel 

were the same issues that surfaced with her daughter before she passed away and reiterated to the 

committee how important it is to find a way forward. Both Eva and Gabriel Martinez thanked the 

members of the workgroup for their participation on workgroup discussions focused on 

advancing meaningful employment. Eva identified issues that surfaced from the workgroup as 

barriers to meaningful employment. Gabriel highlighted that only 44 percent of adults with 

intellectual disabilities between the age of 21 to 64 are in the labor force. Eva noted that for those 

employed, a larger share of workers were self-employed in 2022 than those with no disability. 

Gabriel also highlighted the important role peer mentorship can have in the workplace. Two key 

areas were drilled down for this session to further examine new opportunities through invited 

guest panelists – (1) support for entrepreneurship and (2) support for people with disabilities in 

tribal nations. 

Two guest panelists provided public input. 

Alton Stuckey, Rhode Island

o Alton Stuckey shared his experience on how he achieved his dream of being a small 

business owner. Alton is a self-trained artist and uses pencils and charcoal to create 

calendars, landscapes, and portraits for customers. Alton shared he was 14 years old 

when he began to draw and was supported at the day program at the time. Alton later 

took abstract art classes at Rhode Island School of Design. Since owning his business in 

2019, Alton acknowledged the support received from both family and the Rhode Island 

DD Council. Alton explained that owning his business has improved his quality of life

through community engagement and economic opportunity. 

Alton shared six recommendations for the committee: (1) Tell people they can do it and 

don’t give up; (2) More self-employment programs to help people learn about how to 

start a business; (3) Funding from DD Medicaid Waiver to help people to buy necessary 

materials and supplies for their business; (4) Funding from VR to support business 

owners with disabilities; (5) Places in the community where people can go for production 

space (for artists); (6) Approval from Social Security to keep SSI checks and earnings 

from 1-3 year to get business off the ground. 
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Joshua Drywater, Arizona

o Joshua Drywater, a Cherokee Nation citizen, shared his experience working to 

strengthen workforce and education programs for individuals with disabilities in the 22 

federally recognized tribes in Arizona. Currently, Joshua is the Program Manager for 

Native Initiatives at the University of Arizona’s Sonoran Center for Excellence in 

Disabilities. Joshua explained to the committee that it is important to recognize that each 

tribe and community has its own set of strengths, barriers, culture, and traditions. At the 

same time, he noted a common alarming challenge across the tribal nations was higher 

unemployment rates resulting in one in four native Americans to live in poverty. 

Leading barriers identified include transportation, technology, and lack of services 

access and social services. Best practices identified include being culturally informed 

when providing services, having community based services to increase empowerment, 

maximizing family unit support, and recognizing the resiliency by native American 

population. In moving forward, Joshua recommends improved outreach and 

communication from the state or federal partners in reservations. The tribal nations need 

the Federal government support to increase employment opportunities to address 

existing poverty. 

Following the panel feedback, the floor was open for committee discussion. Related to tribal 

issue focus area, it surfaced on the importance of cultivating relationships from small business 

owners with tribal communities to be effective. Relationship building must be developed to 

support workforce development in tribal communities. In this area, one member acknowledged 

that the best programs are developed within by tribal nations with federal support. 

On matters related to issues not addressing tribal community, one member reflected how 

technology changed the landscape of employment and this has impacted the intake process in not 

always being accessible. Another member reflected that job developers are not skilled enough in 

providing support. Another member reflected on making the distinction between having a job 

and career and must emphasize the importance of career advancement opportunities for people 

with disabilities. 

HCBS / Community Living 

Workgroup Co-Chairs – Santa Perez and James Trout 

Santa Perez opened the session and recognized the members of the workgroup. Both Santa and 

James Trout highlighted issues surfaced by the workgroup. They include assistive technology, 

disaster preparedness, education, housing, personal safety, and transportation. In response to 

increased climate change, the workgroup focused on the area of disaster preparedness. 

Three guest panelists were introduced to provide feedback to the committee on the topic of 

disaster preparedness. 

Amanda Baker, Florida

o Amanda shared her experience in response to the impact of Hurricane Michael in 2018 

while living in Panama City, Florida. In advance of the storm, she felt trapped since she 

could not go to a shelter because they could not accommodate in providing hospital beds. 

Amanda explained that experiencing the storm in her home was a traumatic experience. 

After the storm passed, Amanda was not able to leave her home due to a fallen tree
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outside her door. And, Amanda’s personal care attendants could not visit due to road 

conditions. One week after the storm and still living in her home without power, the 

temperature rose to over 100 degrees which exacerbated her health conditions further. 

Through the support of the Florida Developmental Disability Council, they were able to 

help her transition to build a new life in Tallahassee where she now works for Disability 

Rights Florida. In that process, Amanda described how she navigated bureaucratic 

hurdles in working with FEMA and Housing Authority to get services. Amanda closed 

her remarks by highlighting resources from Disability Rights Florida to support 

emergency preparedness. 

Vance Taylor, California 

o Vance shared his perspective as a state official in his current role as Chief of the 

Office of Access and Functional Needs at the California Governor’s Office of 

Emergency Services (Cal OES). Vance leads a team to ensure individuals with 

disabilities are identified and integrated into the State’s management systems before, 

during, and after disasters. From his experience, Vance shared that people with 

disabilities are disproportionately impacted after disaster strikes. His office seeks to 

identify needs in advance such as ensuring emergency shelters are physically and 

programmatically accessible. 

Vance emphasized that the disability population also need to be proactive in their 

own preparedness in order to effectively navigate the emergency management 

landscape. A few simple steps could include registering in one’s state system to get

up to date emergency information such as California’s Cal Alert system. In addition, 

the importance of developing a personal evacuation plan that may include identifying 

five people you can rely on for support in your social network. And, knowing what 

you must take with you when one must leave in a moment’s notice such as medicine 

and chargers for a power wheelchair. 

Kira Meskin Schiff, Illinois

o Kira shared her expertise as a Community Reintegration Advocate for a CIL and as 

Vice-Chairperson on an advisory committee with the Illinois Emergency 

Management Agency’s Access and Functional Needs. 

Kira identified several barriers for those who use and provide home and communitybased services and acknowledged this population segment are often left out of 

emergency management services. She noted how that this has been barrier in her 

home state of Illinois due to coordination challenges between state agencies as she 

observed during the COVID-19 crisis. Kira noted that most of the DSPs are women, 

people of color, and immigrants which further the health disparities that already exist. 

Kira observed poor communication has been a barrier on emergency preparedness. 

There are hurdles with access to technology and the Internet. And, the written 

material shared is not always available in plain English. To improve, agencies should 

follow the Americans with Disabilities Act (ADA) requirements on effective 

communication and be creative to use multiple vehicles to communicate a message 

such as both emailing and placing a phone call. And, Kira recommended 

improvements for people with disabilities to be counted in disaster preparedness data 

collection. 
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From a systemic level, Kira emphasized the importance of every state having an

Access and Functional Needs Office; the importance of people with disabilities being 

at the table in planning to ensure equity; and improved coordination with CILs, State 

Councils on Developmental Disabilities, the ARC, and other disability led 

organizations on disaster preparedness. 

Following the panel feedback, the floor was open for committee discussion. One member 

acknowledged Amanda Banker (panelist) for sharing her personal experience to help make lifesaving changes in her community as well as helping the committee better understand. Another

member acknowledged how the DSP workforce is putting themselves at risk to leave loved ones 

during times of crises to carry out their ethical responsibilities and emphasized we need to 

support them more in these situations. Other members joined and enumerated the points made by 

presenters on the importance of plain language to inform. In addition, both people with 

disabilities and DSP workforce being at the table for disaster preparedness planning to better 

support the intellectual disability population. 

One committee member acknowledged the point raised by Vance Taylor on what states can and 

should do to build an effective disaster response system. Another member noted that the National 

Council on Disability issued a semi-annual report on disaster preparedness and further 

enumerated that the committee should explore a recommendation where special language gets

added when federal funding to states occur to ensure people with intellectual disabilities can

return to the community after a disaster. 

HCBS / Federal Support Programs 

Workgroup Co-Chairs – Shawn Aleong and Paul Aronsohn

Paul Aronsohn opened the session and recognized that while there are a lot of federal support 

programs for the intellectual disability population, the workgroup focused on two of the most 

popular programs – Medicaid and Supplemental Security Income (SSI). Paul recognized his cochair Shawn Aleong and members of the workgroup and thanked them all for their leadership 

and support. 

Paul explained to members of the committee that HCBS programs are often funded by state 

waivers. Waivers are part of state’s Medicaid programs, but they provide a special group of 

services to a certain population. Waivers usually require medical and financial eligibility. Paul

highlighted that both Medicaid and SSI income/asset limits are too low resulting in married 

couples being penalized. To support his point, Paul illustrated through tables comparing the 

income and asset amounts for an individual who is single and a couple in the Medicaid and SSI 

programs. As a result, marriage is a barrier out of fear of losing services and this issue should be 

further examined by the committee from both a financial and moral perspective. Paul also noted 

housing programs have income and asset limitations that can be looked at further by the 

workgroup. Shawn Aleong echoed the points made by Paul and felt it goes against the country’s 

principles on how people with intellectual disabilities choose to live in getting married. 

One guest panelist was introduced to provide public input. 
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Patrice Jetter, New Jersey

o Patrice highlighted in her comments the need to reform federal support programs so 

people with disabilities don’t fear losing government benefits when getting married. 

As background, Patrice is an artist with a disability who experienced 

institutionalization and discrimination. Patrice successfully overcame many barriers 

and found employment as a crossing guard in her community. Patrice won over 100 

medals in Special Olympics. In addition, Patrice developed and hosted the “The Trish 

Show” a public access television kids show and was featured in the Netflix series 

“Worn Stories”. 

Patrice shared her experience living in an institution over three years and described 

how she rebuilt her life after leaving. She was able to get her own apartment through 

Section 8 Housing voucher. She described how current government benefits is a 

challenge to pay bills and feels penalized when trying to earn extra income. Patrice 

shared she wishes she could get married, but the combined benefit would get reduced. 

Instead, she and her partner Carlos had a commitment ceremony. Patrice advocated 

that federal support programs need to get caught up with the times to ensure a better 

quality of life for people with disabilities. 

Following Patrice’s comments, the floor was open for committee discussion. Members of the 

committee praised Patrice for sharing her story and making a difference to increase awareness. 

The committee discussion focused mostly on ABLE accounts as a mechanism to save without 

losing SSI benefits. ABLE accounts are available majority of states and territories and legislation 

recently passed to increase the age limit from onset of disability before turning 26 to 46 years of 

age. Another member reminded the committee that this issue does go beyond savings and 

impacts the availability of community-based services. The workgroup co-chairs thanked the 

committee for their feedback as a good starting point for workgroup discussion. 

Closing Remarks

Jim Brett, PCPID Chair 

Chairman Brett thanked all the PCPID members for their participation in the meeting and the 

ideas they brought forward during the discussion. Jim shared with the committee his key 

takeaways from the meeting. Jim also noted that steps are already underway for the report 

writing to begin this summer. And, the PCPID committee will reconvene when the report is 

ready for review during the second half of the year. 

Jim closed the meeting to acknowledge and reflect on the life of Judy Heumann, a trailblazer and 

the mother of the disability rights movement. Jim noted that just like many of the guest panelists

that spoke before the committee during the meeting, Judy also gave remarks before a PCPID 

meeting and stated, “It is pivotal to create a society where there is an expectation that all 

individuals are living and integrated in the community, and receive proper services and support.” 

Jim reflected that the PCPID time spent together to jointly address HCBS issues is building on 

Judy Heumann’s legacy and vision. 

Meeting Adjournment

Chairman Brett adjourned the meeting.