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  4. The President’s Committee for People with Intellectual Disabilities (PCPID)

The President’s Committee for People with Intellectual Disabilities (PCPID)

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It is estimated that between seven and eight million Americans of all ages, or 3% of the general population, experience intellectual disabilities. Nearly one in ten families in the U.S. are directly affected by a person with intellectual disabilities at some point in their lifetimes.

In 1966, President Lyndon B. Johnson established The President’s Committee for People with Intellectual Disabilities (PCPID), formerly The President's Committee on Mental Retardation, to ensure the right of a “decent, dignified place in society” for people with intellectual disabilities. Since that time, PCPID has served as a federal advisor to the President and the Secretary of Health and Human Services on matters relating to persons with intellectual disabilities.

PCPID promotes policies and initiatives that support independence and lifelong community inclusion. ACL provides oversight and support for PCPID.

As an advisory committee, PCPID does not receive an appropriation from Congress to administer federal funds. Thus, it does not administer grants nor does it provide financial or technical assistance to individuals, groups, agencies, or organizations.

Mission

PCPID aims to provide advice and assistance to the President of the U.S. and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual disabilities as well as the field of intellectual disabilities. The foundation of this mission is a goal to improve the quality of life experienced by people with intellectual disabilities by upholding their full citizenship rights, independence, self-determination, and lifelong participation in their communities.

Membership and Activities

The PCPID has 20 citizen members and 13 ex officio (federal government) members. Citizen members are appointed by the President and serve for a maximum of two years. A variety of individuals who reflect the diversity of America are appointed as citizen members, including people with intellectual disabilities and their family members, researchers, service providers and other professionals, community and business representatives, and systems advocates.

The 13 government members include the secretaries of the Departments of Health and Human Services, Education, Labor, Housing and Urban Development, Commerce, Transportation, the Interior, and Homeland Security; the U.S. Attorney General; the President and CEO of the Corporation for National and Community Service; the Chairs of the Equal Employment Opportunity Commission and National Council on Disability; and the Commissioner of the Social Security Administration. PCPID is also supported by a team of federal employees.

Formal meetings typically are held at least twice per fiscal year, unless there are significant citizen member vacancies. 

Citizen Members

Brett HeadshotJames T. Brett (Chair), Massachusetts
James T. Brett has served as the President and Chief Executive Officer of The New England Council, the nation’s oldest non-partisan regional business association, since 1996. Brett is a disability rights advocate, serving as Chairman of both the Massachusetts Governor’s Commission on Intellectual Disability and the Disabled Persons Protection Commission. He also serves as Vice Chairman on the National Council on Disability. Previously, Brett was President of the Board of Directors of the Massachusetts Association for Mental Health. He was inducted to the Massachusetts Special Olympics Hall of Fame and bestowed The Edward M. Kennedy Leadership Award by Disability Law Center. University of Massachusetts Boston established the James T. Brett Chair, the nation’s only endowed chair in disability and workforce development. 

Aleong HeadshotShawn Aleong, Pennsylvania 
Shawn Aleong is a young African American man with cerebral palsy and an intellectual disability, as well as a disability and civil rights activist. He is a sophomore at Temple University, where he studies Legal Studies, Real Estate, and Finance. Aleong serves as Senior Advisor to Temple Student Government and sits on the Board of Advisers for Temple’s Institute on Disabilities. He is also an intern at Disability Rights Pennsylvania and a member of the NAACP. Previously, he was a member of Philadelphia’s Police Advisory Commission and the Board of Directors for The Arc of Philadelphia, an organization that advocates for the rights of people with disabilities.

AronsohnPaul Aronsohn, New Jersey
Paul Aronsohn currently serves as New Jersey’s statewide Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families – a position to which he was appointed by Governor Phil Murphy in April 2018. As such, he serves as the administration’s lead advocate and ally for New Jersey residents in need of critical services and supports ranging from early childhood through adulthood. Aronsohn has held positions in both the public and private sectors, serving as Mayor of Ridgewood, NJ, as well as at the U.S. Department of State during the Clinton Administration. Aronsohn’s understanding and passion for disability issues is rooted in his family experience. He learned so much from his siblings, including his sister Patti, who lived her life with disabilities, as well as with enormous strength, courage, grace, and beauty. He also learned from their mother, Margot, who was his sister’s primary caregiver.

BoskindPaul Boskind, Texas 
Paul Boskind, PhD, is a licensed psychologist and Founder and Chief Executive Officer of Deer Oaks, a Behavioral Health Organization. Boskind is a Person with Disability, as he is legally blind. His doctoral program focused on clinical and school psychology, and his doctoral dissertation was on adjustment to physical disabilities with a focus on adjustment to blindness. He has worked with the disabled population at Helen Keller Services for the Blind, the Epilepsy Foundation, and the Lighthouse for the Blind. Boskind is experienced in working with persons with intellectual disabilities across the age span and in various settings, including day treatment programs, group homes, sheltered workshops, and school settings. He serves on the Leadership Council of the Foundation Fighting Blindness, the Advisory Council of the San Antonio Lighthouse for the Blind, and the Disability Rights Working Group at the Berkeley Center on Comparative Equality and Anti-Discrimination Law at UC Berkeley School of Law.

Emmanuel Jenkins, Delaware   

Emmanuel Jenkins is founder of We Stand 4 Something, an organization that supports individuals with disabilities and their families. He serves as the Community Relations Officer for the Delaware Developmental Disabilities Council and serves as the chair of the Delaware Employment First Oversight Commission and vice-chair of the Delaware Developmental Disabilities Services Advisory Committee. An alumnus of the Partners in Policymaking program, Emmanuel has served on the Advisory Committee for the Self-Advocacy Resource and Technical Assistance Center and as chair of the National Association of Councils on Developmental Disabilities (NACDD) Self-Advocacy Committee. He also serves on the NACDD board and chairs its communications workgroup. In academia, Emmanuel is a LEND Faculty Member at the University of Delaware. He has been a motivational speaker for over two decades. 

Jones HeadshotKara Jones, Maryland
Kara Jones is a member of many self-advocacy groups. These include Project ACTION!, a regional coalition of self-advocates and self-advocacy groups from the District of Columbia, Maryland, and Virginia, and People on the Go of Maryland, a statewide advocacy group made up of people with intellectual and/or development disabilities. Jones is also involved in Expectations Matter: My Life, My Plan, My Choice, which is a Person-Centered Planning Training program for people with disabilities and family members.

JorwicNicole Jorwic, Illinois
Nicole Jorwic is the Chief of Advocacy and Campaigns at Caring Across Generations. Before joining Caring Across, Jorwic was Senior Director of Public Policy and Senior Executive Officer of State Advocacy at The Arc of the United States. Before coming to DC to work on Federal Advocacy, she served as Senior Policy Advisor and Manager of the Employment First Initiative in Illinois. Prior to that appointment, Jorwic was the CEO/President of the Institute on Public Policy for People with Disabilities. She is also an accomplished special education attorney and an advocate for students with disabilities and their families. Jorwic is most importantly a sibling– her brother Chris is 32 and has autism.

KanefskyCathy Kanefsky, Delaware
Cathy Kanefsky’s personal experiences fuel her passion for serving mission-driven organizations. Kanefsky and her husband, Carl, have three sons. Thirty-year-old twins Sam and Adam were born four months early and live with significant physical and intellectual disabilities, including autism. Their 28-year-old son, Stephen, and his wife, Alexandra, are both special education teachers. After 14 years in leadership roles at the March of Dimes, Kanefsky built and led national field operations for Autism Speaks. Following five years as Chief Development Officer at A.I. duPont Hospital for Children, she now serves as the President and CEO of the Food Bank of Delaware. Her determination to help those seeking a better future is the foundation for enhancing job training and employment opportunities at the Food Bank – for all people – including those with intellectual disabilities.

Leonhard HeadshotM. Brent Leonhard, Washington
M. Brent Leonhard is an Attorney in the Office of Legal Counsel for the Confederated Tribes of the Umatilla Indian Reservation. He has spent his career advocating for the advancement and expansion of the rights of tribal nations and citizens. In 2011, Leonhard was appointed to Attorney General Eric Holder’s Federal/Tribal Domestic Violence Taskforce. In 2015, he was appointed to the U.S. Sentencing Commission’s Tribal Issues Advisory Group. As a parent of an Autistic child, he is intimately familiar with the structural and systemic problems and frustrations those with intellectual or developmental disabilities face. Leonhard is intent on advocating for significant improvements to federal law and policy in this area.

Macbeth HeadshotJoseph M. Macbeth, Vermont
Joseph M. Macbeth is the President and Chief Executive Officer of the National Alliance for Direct Support Professionals and the first employee hired by the organization in 2011. While working in New York, Macbeth partnered with the State University of New York to assist more than 500 direct support professionals in advancing their college education through the “Disability Studies Certificate”. He is a guest faculty at the National Leadership Consortium on Developmental Disabilities and currently sits on the College of Direct Support’s National Advisory Board. In 2016, Macbeth was appointed by as a Member of the Advisory Council for the New York State Justice Center for the Protection of People with Special Needs. In 2019, he was appointed by the Administration for Community Living as a member of the National Quality Forum’s Committee on Person-Centered Planning and has been recognized by the National Historic Recognition Project for significant national contributions in the field of intellectual and developmental disabilities. 

Martinez HeadshotGabriel Martinez, Arizona
Gabriel “Gabe” Martinez is currently Project Co-Coordinator at the University of Arizona Sonoran Center for Excellence in Disabilities, where he has worked as a peer navigator and office assistant for two years. He is a 2016 graduate of the Sonoran Center’s Project SEARCH, an employment preparation program. Martinez is a regular speaker and trainer for webinars, course guest lectures, high school classroom presentations, medical student education at the UArizona College of Medicine-Tucson, as well as a co-coordinator of a Native youth focused transition and employment program called the Finds Their Way: Communities for Youth Transition. He works as a peer navigator on multiple projects, including the Transition AHEAD Roundtable, a comprehensive youth-to-adult transition program. Martinez serves on the leadership group for Self-Advocacy Solutions and represents the Sonoran Center on the Association of University Centers on Disabilities’ Council on Leadership in Advocacy.

James Meadours, TexasPhoto of James Meadours
James Meadours is a nationally recognized civil rights and sexual assault prevention activist in the self-advocacy movement. As a young adult, he quickly became a respected leader in the self-advocacy movement, but it wasn’t until later in life that he started speaking out about sexual violence. As a survivor of a number of sexual assaults throughout his life, his additional mission is to educate society about the high rate of sexual violence in the disability community. He presents at local, state and national conferences, rape crisis centers, and to disability and child advocates, as well as law enforcement, about this critical topic. He provides consultation on related projects to federal agencies and non-profits, like the Vera Institute of Justice. He served on The Arc’s National Center on Criminal Justice and Disability’s (NCCJD®) National Advisory Committee. Currently, James serves as the President for Texas Advocates, the statewide self-advocacy group. James resides in San Antonio, Texas, races his slot cars, gets together with friends, and travels willingly to wherever his message still needs to be heard.

Lucy Meyer, CaliforniaMeyer Headshot
Lucy Meyer is an international advocate for young people with disabilities. She has worked closely with Special Olympic, Best Buddies, and UNICEF. She was born with cerebral palsy as a result of oxygen deprivation for five minutes at birth. Doctors originally indicated that Lucy might never be able to sit up or swallow, but she proudly states that the doctors were wrong. Since 2013, she has worked tirelessly to make sure that young people with disabilities, wherever they are around the world, receive quality health and education and experience the joy of sport and participation in society. Her advocacy for the acceptance and inclusion of young people with disabilities has taken her to the United Nations, U.S. Congress, as well as meetings with ministers and officials throughout the world.

Nelis HeadshotTia Nelis, Illinois
Tia Nelis currently serves as Coordinator of Self-Advocate Engagement at TASH, an international advocacy association of people with disabilities, their family members, other advocates, and people who work in the disability field. In this role, she supports the Self Advocacy Resource and Technical Assistance Center. Nelis previously served as Director of Policy and Advocacy. Nelis has drawn on her experience as a person with a disability to promote and demonstrate the benefits of empowering people with disabilities to effectively advocate for themselves. 

Perez HeadshotSanta Perez, Nevada
Santa Perez is a published author, mother, and self-advocate living with cerebral palsy in Las Vegas, Nevada. She currently serves as a member of the Nevada Governor’s Council on Developmental Disabilities and sits on numerous councils and committees, including the Executive Board of National Association of Council on Developmental Disabilities. Perez is also the Founding Member and President Emeritus of People First Nevada. She recently published her first book, Sitting at Eye Level: My Life as an Advocate, a Professional, a Woman, a Mom and a Person with a Significant Disability. She earned her B.A. in Psychology from Cal State Northridge. She is a proud mother to her son, Noah.

Perry HeadshotNick Perry, Georgia
Nick Perry is a sibling of a young man with intellectual and developmental disabilities (I/DD), and he’s also been a foster father to children with disabilities. Perry has over 25 years of cumulative experience in the disability field, ranging from disability policy and implementation to corporate disability inclusion strategy. Currently, he is the Disability Inclusion subject matter expert for the Boeing company. Additionally, he is the Chairman of the Georgia Council on Developmental Disabilities as appointed by Gov. Kemp and leads the Georgia Sibling Connection, a support and social group for siblings of individuals with disabilities. 

Hillary Dunn Stanisz HeadshotHillary Dunn Stanisz, Massachusetts
Hillary Dunn Stanisz has an older brother with Angelman Syndrome, and, as a result of this experience, she has devoted her career and volunteer activities to assisting individuals with disabilities and their families. Dunn Stanisz is a Senior Attorney at the Disability Law Center, the Protection and Advocacy agency for Massachusetts, where she focuses on advocating for appropriate community supports and services for individuals with intellectual and developmental disabilities and conducting abuse and neglect investigations. For several years, Dunn Stanisz served on the Massachusetts Developmental Disabilities Council. Currently, she serves on the Steering Committee for The Arc of Massachusetts and as Co-President of the Board of Directors for the Massachusetts Sibling Support Network. Dunn Stanisz is a graduate of Northeastern University School of Law and Tufts University.

Trout HeadshotJames Trout, Virginia
James Trout was diagnosed with Asperger’s Syndrome when he was 15 years old and subsequently diagnosed with Dysthymic Disorder at the age of 25. He received his B.A. from American University in Political Science and his M.S. from George Mason University in Transportation Policy, Operation, and Logistics. For the last three years, Trout has worked as an analyst for SourceAmerica, a nonprofit dedicated to increasing employment opportunities for persons with disabilities. Previously, he was a policy fellow for the nonprofit RespectAbility. In this role, he traveled to Iowa and New Hampshire to speak with Presidential candidates about their plans to improve job prospects for persons with disabilities.

Weintraub PhotoLiz Weintraub, Maryland
Liz Weintraub is a disability policy advocate and a full-time member of the Association of University Centers on Disabilities’ policy team. She also hosts “Tuesdays With Liz: Disability Policy for All,” a video series highlighting current issues in disability policy. Previously, Weintraub served as a fellow for Senator Casey of Pennsylvania, working on disability policy. She has also worked for the Council on Quality & Leadership and is an alumnus of the LEND training program at the Center for Leadership in Disability at Georgia State University. In 2018, she testified before the Senate Judiciary Committee about her personal experience as a woman with disabilities.

Zimmerman HeadshotJordyn Zimmerman, Ohio
Jordyn Zimmerman is a recent graduate from Boston College, where she earned her Master of Education degree. Before graduate school, she interned at the National Disability Rights Network and completed her bachelor’s degree in Education Policy at Ohio University. As a nonspeaking autistic student who was denied access to effective augmentative communication until she was 18, Zimmerman has personal experience challenging the educational status quo, which is featured in the 2021 documentary, This Is Not About Me. Zimmerman also serves on the board of CommunicationFIRST and is passionate about ensuring every student is able to access effective communication and exercise their right to a truly inclusive education.

Ex Officio Members

The Honorable Merrick Garland, Attorney General of the US Department of Justice

Official Representative: 
Max Lapertosa, Trial Attorney, Housing and Civil Enforcement Section, U.S. Department of Justice
150 M Street NE
Washington, DC 20002
Office: (202) 598-9726
Email: Max.Lapertosa@usdoj.gov

The Honorable Deb Haaland, Secretary of the US Department of the Interior

Official Representative:
Jennifer Ackerman, Deputy Chief Human Capital Officer, U.S. Department of the Interior
1849 C Street, NW
Washington, DC 20240
Office: (202) 573-1203
Email: Jennifer_Ackerman@ios.doi.gov

The Honorable Gina Raimondo, Secretary of the US Department of Commerce

Official Representative:
Larry J. Beat, Acting Director, Office of Civil Rights, U.S. Department of Commerce
1401 Constitution Ave NW
Washington, DC 20230
Office: (202) 821-6178
Email: lbeat@doc.gov

Alternate Representative:
Monique Dismuke, Senior Disability Program Manager, Office of Civil Rights, U.S. Department of Commerce
1401 Constitution Ave NW
Washington, DC 20230
Office: (202) 748-1393
Email: mdismuke@doc.gov

The Honorable Julie A. Su, Acting Secretary of the US Department of Labor

Official Representative:
Taryn M. Williams, Assistant Secretary, Office of Disability Employment Policy, U.S. Department of Labor
200 Constitution Avenue NW
Washington, DC 20210
Office: (202) 693-7880
Email:  williams.taryn.m@dol.gov

Alternate Representative:
Adam Fishbein, Policy Advisor, Office of Disability Employment Policy, U.S. Department of Labor
200 Constitution Avenue NW
Washington, DC 20210
Office: (202) 693-8955
Email: Fishbein.Adam.R@dol.gov

The Honorable Xavier Becerra, Secretary of the US Department of Health and Human Services

Official Representative:
Jodie Sumeracki, Senior Policy Advisor, Disabled and Elderly Health Programs Group, Centers for Medicare and Medicaid Services, U.S. Department of Health and Human Services
7500 Security Boulevard
Baltimore, MD 21244
Office: (410) 786-5903
Email: Jodie.Sumeracki@cms.hhs.gov

Alternate Representative:
Tiina Urv, PhD, Program Director, U.S. Department of Health and Human Services, National Institutes of Health
31 Center Drive
Bethesda, MD 20892
Office: (301) 827-2746
Email:  Urvtiin@mail.nih.gov

The Honorable Adrianne Todman, Acting Secretary of the US Department of Housing and Urban Development

Official Representative: 
Sasha Samberg-Champion, Deputy General Counsel for Enforcement and Fair Housing, U.S. Department of Housing and Urban Development
451 7th Street SW
Washington, DC 20410
Email: Sasha.M.Samberg-Champion@hud.gov
Office: 202-402-3413

Alternative Representative: 
Jeanine Worden, Associate General Counsel for Fair Housing, U.S. Department of Housing and Urban Development
451 7th Street SW
Washington, DC 20410
Email: Jeanine.Worden@hud.gov
Office: 202-256-1780

The Honorable Pete Buttigieg, Secretary of the U.S. Department of Transportation

Official Representative:
Kelly Buckland, Disability Policy Advisor, US Department of Transportation
1200 New Jersey Avenue SE
Washington, DC 20590
Email: Kelly.Buckland@dot.gov
Office: (202) 941-6164

Alternate Representative: 
Yvette Rivera, Associate Director, Equity and Access Division, US Department of Transportation
1200 New Jersey Avenue SE
Washington, DC 20590
Email: Yvette.Rivera@dot.gov
Office: (202) 366-5131

The Honorable Miguel Cardona, Secretary of the U.S. Department of Education

Official Representative
Glenna Wright-Gallo, Assistant Secretary, OSERS, U.S. Department of Education
400 Maryland Avenue SW: Room 4A193
Washington, DC 20202
Office: (202) 401-1844
Email: Glenna.Gallo@ed.gov

Alternative Representative:
Carol Dobak, Deputy Commissioner, Rehabilitative Services Administration, U.S. Department of Education
550 12th Street SW: Room 5153
Washington, DC 20202
Office: (202) 245-7325
Email: Carol.Dobak@ed.gov

The Honorable Alejandro Mayorkas, Secretary of the US Department of Homeland Security

Official Representative:
Brian S. Parsons, Senior Policy Advisor, Office for Civil Rights and Civil Liberties, U.S. Department of Homeland Security
2707 Martin Luther King Jr. Ave SE
Washington, DC 20528
Office: (202) 357-7787
E-mail: brian.parsons@hq.dhs.gov

Alternative Representative:
Laura Davis, Disability Employment Program Manager, Office for Civil Rights and Civil Liberties, U.S. Department of Homeland Security
2707 Martin Luther King Jr. Ave SE
Washington, DC 20528
Office: (202) 357-1264
Email: Laura.Davis@hq.dhs.gov

The Honorable Michael Smith, Chief Executive Officer, Corporation for National and Community Service

Anthony Hynes, Civil Rights Director, Corporation for National and Community Service
250 E Street, SW, Suite 2208
Washington, DC 20525
Office: (202) 729-0160
Email: AHynes@Americorps.gov

Alternate Representative:
Veta Hurst, DEIA Program Manager, Corporation for National and Community Service
250 E Street, SW, Suite 2208
Washington, DC 20525
Office: (202) 606-7567
Email: vhurst@americorps.gov

The Honorable Martin O'Malley, Commissioner of the U.S. Social Security Administration

Official Representative:
Denise Leach, Social Insurance Specialist, Office of Retirement and Disability Policy, U.S. Social Security Administration
500 E Street, SW
Washington, DC 20245
Office: (410) 966-6884
Email: Denise.Leach@ssa.gov

The Honorable Charlotte A. Burrows, Chair of the Equal Employment Opportunity Commission

Official Representative:
Heather E. Nodler, Attorney Advisor, ADA & GINA Division, Office of Legal Counsel, U.S. Equal Employment Opportunity Commission
131 M Street, NE
Washington, DC 20507
Office: (202) 921-2660 
Email: heather.nodler@eeoc.gov

Alternative Representative:
Sarah DeCosse (she/her), Assistant Legal Counsel, ADA & GINA Division, Office of Legal Counsel, U.S. Equal Employment Opportunity Commission
Washington, DC
Office: (202) 921-2653
Email:  sarah.decosse@eeoc.gov

Claudia Gordon, Chair, National Council on Disability

Official Representative:
Joan Durocher, General Counsel and Director of Policy
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
Office: (202) 272-2004
Email: jdurocher@ncd.gov

Alternative Representative:
Amged Soliman, Senior Attorney Advisor
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
Office: (202) 272-2004
Email:  asoliman@ncd.gov

PCPID Reports
PCPID Meeting Materials (including Minutes)

Previous Meeting Minutes:

 


Last modified on 12/16/2024


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