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's Administration on Intellectual and Developmental Disabilities 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.
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 31 members: 18 citizens, and 13 ex officio (federal government) members. A maximum of 21 citizen members is allowed. Citizen members are appointed by the President and serve for a maximum of two years. A variety of individuals are appointed as citizen members, including parents of individuals with intellectual disabilities, scientists and professionals from the field, 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 are held at least twice per fiscal year and the Committee convenes informally throughout the year. In addition, PCPID is mandated to submit an annual report to the President. This report is the vehicle through which members provide advice and recommendations pertaining to intellectual disabilities.
PCPID Activities Update
In a federal fiscal year, typically PCPID has two in person meetings, one in the fall and one in the spring. In FY 2017, PCPID met on 11/30/16 - 12/1/16 and 3/23/17 - 3/24/17.
The committee worked on the 2017 Report to the President: “America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy.” The committee established workgroups and they had calls to work on the report. The report was approved on May 11, 2017, and delivered to the president in the fall. It was published on ACL’s website last month.
- Citizen Members
Maxwell Barrows is Outreach Director for Green Mountain Self-Advocates, a position he has held since 2007. He mentors youth and adults with developmental disabilities to speak up for themselves and become leaders. Max connects with people on all levels advocating for true-inclusion of people with developmental disabilities. In his work, he advances the message that when you meet an individual with a disability, presume competence. He received a White House Champions of Change award for this work in 2015. In 2016 Max was nominated by President Obama to serve as a member of the President’s Committee for People with Intellectual Disabilities. He is co-founder of his local self-advocacy group, Capitol Advocates Together, and serves on the VT State Program Standing Committee for Development Services and the VT State Rehabilitation Council. Max is an accomplished self-advocate from Vermont who served as a board member for Self-Advocates Becoming Empowered from 2008 to 2016. His goal is to travel internationally to spread his messages of true-inclusion and self-advocacy.
Peter V. Berns
Peter V. Berns is CEO of The Arc, a position he has held since 2008. Previously, he was Executive Director of the Maryland Association of Nonprofit Organizations from 1992 to 2008. He was CEO of the Standards for Excellence Institute from 2004 to 2008. Earlier in his career, he held positions in the Maryland Attorney General’s Office, including Assistant Attorney General and Deputy Chief of Consumer Protection. Mr. Berns was first appointed to the PCPID in 2011. He has been named to The Nonprofit Times’ Power and Influence Top 50 list five times over the past decade. Mr. Berns received a B.A. from the University of Pennsylvania, a J.D. from Harvard Law School, and an L.L.M. from Georgetown University Law Center.
Jack Martin Brandt (Designated Chair)
Jack Martin Brandt is the Disability Policy Specialist for the Partnership for People with Disabilities at Virginia Commonwealth University, a position held since 2010. He is also an accomplished artist. He was a Disability Rights Advocate at the Virginia Office for Protection and Advocacy from 2008 to 2010, and a Disability Policy Consultant for the State of Virginia from 2006 to 2008. He was also a Virginia Governor’s Fellow at the Office of Community Integration for People with Disabilities in 2006. He was first appointed to the PCPID in 2010. Mr. Brandt served on the Virginia Community Integration Advisory Commission and the Virginia Statewide Independent Living Council until 2012. He received the Colorado Award from the Virginia Department of Aging and Rehabilitation Services in 2013, the Participatory Action Research Award from The Arc of the U.S. in 2012, and the Jackie Crews Award for Excellence in Leadership from the Virginia Board for People with Disabilities in 2006. Mr. Brandt received a B.A. from James Madison University and an M.S. from Virginia Commonwealth University.
James T. Brett
James T. Brett is the President and CEO of The New England Council, a position he has held since 1996. Mr. Brett previously served as a member of the Massachusetts House of Representatives from 1981 to 1996. He serves as Chairman of the Massachusetts Governor’s Commission on Intellectual Disability and is President of the Massachusetts Association for Mental Health. Mr. Brett also sits on the Advisory Councils of the Robert F. Kennedy Children’s Action Corps and the New England Center for Children. Mr. Brett is the recipient of the Lifetime Public Service Award from Action for Boston Community Development, the Massachusetts Special Olympics’ Distinguished Leadership Award, and the Hospice of Boston’s Humanitarian of the Year Award. In 1996, Bay Cove Human Services of Boston named “Brett House,” a new community home for disabled adults, in his honor. The University of Massachusetts Boston established the James T. Brett Chair in Disability and Workforce Development in 2013. He served on the PCPID from 2002 to 2006, again from 2011 to 2013, and was designated Chair in 2011. Mr. Brett received a B.A. from American University and an M.P.A. from Suffolk University and the John F. Kennedy School of Government at Harvard University.
Kenneth Capone is Public Policy Coordinator for People on the Go of Maryland, a position he has held since 2010. Previously, he served as Director of the Cross Disability Rights Coalition of Maryland from 2004 to 2010 and also as a legislative intern with People on the Go of Maryland from 2004 to 2007. He was an Interviewer at The Arc Maryland from 2002 to 2006. He is a member of the Developmental Disabilities Coalition, the Civil Rights Coalition, and Community First Choice. Mr. Capone received a Certificate in Computer Technology/Programming from Johns Hopkins University.
Ryan D. Easterly
Northern California Community Relations Director, MySupport Inc.
Micah Fialka-Feldman is a Teaching Assistant/Peer Trainer with Peer2Peer at Syracuse University, a position he has held since 2012. He was an intern at the Administration on Intellectual and Developmental Disabilities, U.S. Department of Health and Human Services in 2013. He has served on a number of boards, including the Governing Board for National Youth Leadership Network, the National Project Advisory Committee for the Center for Postsecondary Education for Students with Intellectual Disabilities, the Taishoff Center for Inclusive Higher Education, and the Michigan Protection and Advocacy Service. Additionally, he maintains a blog about challenges he faces as an adult with intellectual disabilities. In 2009, he received the Lifetime Achievement Award from Family Voices. Mr. Fialka-Feldman graduated from the Options Program at Oakland University.
Merrill A. Friedman
Merrill Friedman leads the Disability Policy Engagement team and stakeholder advocacy strategy for Anthem, a leading health benefits company serving nearly 71 million people nationwide through its affiliates. She works collaboratively with consumers, advocates, and stakeholders to ensure the diverse interests and preferences of older adults, individuals with disabilities, and children, adolescents, and young adults involved in the child welfare and juvenile justice programs inform Anthem’s health benefits approaches and health care programs. Ms. Friedman also advances the integration of the independent living philosophy, principles of self-determination and the National Advisory Board on Improving Health Care Services for Older Adults and People with Disabilities' six foundational principles throughout these programs, as well as Anthem’s member interactions and business practices. In addition, she leads strategic partnerships with national and local organizations to advance the development of inclusive public policy. Previously, Ms. Friedman was interim director at a nonprofit foster care agency serving at-risk children and adolescents who experienced severe neglect and physical abuse. She also served as president and chief executive officer of a private organization that owned and operated residential treatment facilities, group homes and home and community based services in several states for adolescents with mental health, substance use disorders and/or intellectual disabilities
Tawara D. Goode, MA
Tawara Goode is an assistant professor in the Department of Pediatrics, Georgetown University Medical Center in Washington, D.C. She has been on the faculty of the Georgetown University Center for Child and Human Development (GUCCHD), for over 30 years and has served in many capacities. She has degrees in early childhood education, and education and human development. Professor Goode has extensive experience as a principal investigator for federal and private sector grants and contracts. She is the new Director of the GUCCHD’s University Center for Excellence in Developmental Disabilities (GUCEDD) and is responsible for short-term and ongoing programs for individuals at-risk for and with developmental and other disabilities and their families. Professor Goode's duties include program development, administration, and teaching, within the University and community settings. Professor Goode is also the director of the National Center for Cultural Competence (NCCC) at GUCCHD
Dan Habib (Reappointment)
Dan Habib is a filmmaker and Project Director of the Inclusive Communities Project at the University of New Hampshire’s Institute on Disability, where he has worked since 2008. Previously, he was Photography Editor at the Concord Monitor from 1995 to 2008, where he was named National Photography Editor of the Year in 2006 and 2008. He was a freelance photographer from 1992 to 1995, and Staff Photographer at the Concord Monitor from 1988 to 1992. Mr. Habib created a nationally broadcast film about his son, Including Samuel, and has made many other documentaries on topics related to disability and education. He received the Justice for All Grassroots Award from the American Association of People with Disabilities in 2013 and the Champion of Human and Civil Rights Award from the National Education Association (New Hampshire) in 2012. Mr. Habib received a B.A. from the University of Michigan.
Zachary W. Holler
Zachary W. Holler is a graduate student and 2014 candidate for a Masters in Divinity at the United Theological Seminary. Previously, he was Youth Development Coordinator at Access Center for Independent Living in Dayton, Ohio from 2011 to 2013. He worked as a Deaf Role Model at the Sinclair Community College ASL Lab from 2010 to 2011, as a Human Resource Assistant Intern at Wright-Patterson Air Force Base in 2009, and as an intern at the American Association of Persons with Disabilities in Washington, D.C. Mr. Holler has served as a member of the Consumer Advisory Committee of the Ohio Rehabilitation Services Commission and as a Delegate for the Ohio Governor’s Council on People with Disabilities at the Ohio Governor’s Council Youth Leadership Forum. At Wright State University, he was President of Abilities United and Associate Director of Disability Affairs, a position with the student government. Mr. Holler received a B.A. from Wright State University.
Lisa M. Pugh
Lisa Pugh is Public Policy Director at Disability Rights Wisconsin, the state’s protection and advocacy agency, a position she has held since 2010. Ms. Pugh also coordinates Wisconsin’s Disability Policy Partnership. Previously, she was a State Policy Analyst at the Wisconsin Department of Health Services, a Disability Policy Advisor with the U.S. Department of Education, and a Legislative Fellow with the Committee on Education and Labor in the U.S. House of Representatives from 2009 to 2010. She was a founding member of the Madison Partners for Inclusive Education, and she was appointed to the Dane County Human Services Board. In 2013, she was the recipient of Wisconsin's Elliott Shaw Distinguished Professional Award. Ms. Pugh received a B.A. from the University of Wisconsin.
Michelle “Sheli” Reynolds (Reappointment)
Michelle C. Reynolds is a Research Associate with the University of Missouri—Kansas City (UMKC) Institute for Human Development, a position she has held since 1997. At UMKC, she serves as the Director of the Individual Advocacy and Family Support and Missouri Family-to-Family Disability Resource Center programs. She holds additional leadership roles with various grant programs, including the National Community of Practice for Support to Families, the Division of Developmental Disabilities at the UMKC Department of Behavioral Health, and at the Health Resources and Services Administration. Ms. Reynolds received a B.A. and an M.A. from Rockhurst University and a Ph.D. from the University of Missouri – Kansas City.
Rebecca S. Salon, Ph.D.
Dr. Salon is Project Director at the National Center on Leadership for the Employment and Economic Advancement of People with Disabilities, established by the National Disability Institute, and Program Specialist at the D.C. Department on Disability Services, positions she has held since 2013, respectively. Dr. Salon was an independent consultant from 2007 to 2012 and held numerous positions at the Lt. Joseph P. Kennedy Institute from 1987 to 2007, including serving as Director from 2004 to 2007. She was a member of the boards of Shared Support of Maryland and the Maryland Coalition for Inclusive Education. Dr. Salon received a B.A. from the State University of New York at Albany and an M.S.Ed and Ph.D. from Syracuse University.
Dr. Deborah M. Spitalnik
Dr. Deborah M. Spitalnik is the Executive Director of The Boggs Center on Developmental Disabilities at Rutgers University’s Robert Wood Johnson Medical School (RWJMS), a position she has held since 1983. She is also a Professor of Pediatrics at RWJMS. Dr. Spitalnik chairs the New Jersey Medical Assistance Advisory Council, is past chair of the National Council on Quality and Leadership, and is also a past President of the Association of University Centers on Disabilities. Dr. Spitalnik was appointed to the PCPID in 2011, having previously served on the Committee from 1994 to 2001 and as Chair from 2000 to 2001. She received the Dybwad Humanitarian Award from the American Association on Intellectual and Developmental Disabilities in 2000. Dr. Spitalnik received a B.A from Brandeis University, an Ed.M. from Harvard University, and a Ph.D. from Temple University.
Ricardo Thornton, Sr. (Reappointment)
Ricardo Thornton, Sr. has worked at the Martin Luther King, Jr., Memorial Library in Washington, D.C. since 1978. He is a Member of Project ACTION!, a coalition of adults with disabilities. He is also a Member of the D.C. Developmental Disabilities Council, an actor with the theatre group Players Unlimited, and an international ambassador with the Special Olympics. Mr. Thornton and his wife Donna were the subjects of Profoundly Normal, a made-for-TV movie. In 1997, he was selected by The Washingtonian as a Washingtonian of the Year.
Elizabeth Weintraub works for the Association of University Centers on Disabilities and for the Council on Quality and Leadership. She is the past Chair of the Maryland Developmental Disabilities Council, and a former board member of the National Association of Councils on Developmental Disabilities and Self Advocates Becoming Empowered. She was first appointed to the PCPID in 2011. She was the recipient of the Elizabeth Monroe Boggs Award for Young Leadership in 1998.
Betty Williams is Consumer Education and Training Coordinator at The Arc of Indiana, a position she has held since 2006. Previously, she worked at Achieva Resources as Workshop Consumer from 2005 to 2006 and as Habilitation Specialist from 2000 to 2004. Ms. Williams has served as Secretary of Self-Advocates Becoming Empowered since 2012 and as a Lay Member of the Indiana Developmental Disabilities Commission since 1998. She served as President of Self Advocates Becoming Empowered from 2010 to 2012 and as President of Self Advocates of Indiana from 2005 to 2010.
Ex officio Members
The Honorable Jeff Sessions
Attorney General of the US Department of Justice
Official Representative: (TBD)
Clarette H. Yen
US Department of Justice
Civil Rights Division
Disability Rights Section
950 Pennsylvania Avenue, NW - NYA 4065
Washington, DC 20530
Office: (202) 514-0555
The Honorable Ryan Zinke
Secretary of the US Department of the Interior
Official Representative: (TBD)
Committee Management Officer
US Department of the Interior
1849 C Street, NW, Room 7313
Washington, DC 20240
Office: (202) 208-4524
The Honorable Wilbur Ross
Secretary of the US Department of Commerce
Official Representative: (TBD)
Deputy Director, Office of Civil Rights
US Department of Commerce
1401 Constitution Avenue, NW
Washington, DC 20230
Office: (202) 482-3680 - Fax: (202) 482-4534
The Honorable R. Alexander Acosta
Secretary of the US Department of Labor
Official Representative: (TBD)
The Honorable Tom Price
Secretary of the US Department of Health and Human Services
Official Representative: TBD
Tiina Urv, PhD
US Department of Health and Human Services
National Institutes of Health
31 Center Drive
Bethesda, MD 20892
Office: (301) 827-2746
The Honorable Ben Carson
Secretary of the US Department of Housing and Urban Development
Official Representative: TBD
The Honorable Elaine Chao
Secretary of the US Department of Transportation
Official Representative: (TBD)
Equal Employment Opportunity Programs Division
Office of the Secretary
US Department of Transportation
1200 New Jersey Avenue, SE, Rm. W78-318
West Building, Suite W78-304
Washington, DC 20590
Office: (202) 366-5131 - Fax: (202) 366-5575
The Honorable Betsy DeVos
Secretary of the US Education Department
Official Representative: (TBD)
The Honorable John F. Kelly
Secretary of the US Department of Homeland Security
Official Representative: TBD
The Honorable Carolyn W. Colvin
Commissioner of the US Social Security Administration
Senior Advisor for Disability Program Outreach
Office of Retirement and Disability Policy
US Social Security Administration
835 ITC Building, 500 E Street, SW
Washington, DC 20245
Office: (202) 358-6294 - Fax: (202) 358-6505
- 2017—America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy
- 2016—Strengthening an Inclusive Pathway for People with Intellectual Disabilities and Their Families
- 2015—Leveling the Playing Field: Improving Technology Access and Design for People with Intellectual Disabilities (PDF, 979KB)
- 2012—Managed Long-Term Services and Supports
- 2011—People with Intellectual Disabilities: Critical Supports that Promote Independence, Full and Lifelong Community Inclusion
- 2009—Dignity Through Employment
- 2008—Report to the President: The Promise of Research and Prevention
- 2007—Report to the President: Holding Truths To Be Self-Evident
- 2006—Keeping the Charge: Personal and Economic Freedom for People with Intellectual Disabilities
- 2005—Keeping the Charge: Accessibility to Dental Care for People with Intellectual Disabilities
- Reports to the President, 1967–2004
- PCPID Meeting Minutes
- PCPID Meeting: February 15-16, 2007
- PCPID Meeting: May 14-15, 2007
- PCPID Meeting: September 6-7, 2007
- PCPID Meeting: November 15, 2007
- PCPID Meeting: February 15, 2008
- PCPID Meeting: April 24-25, 2008
- PCPID Meeting: June 25-27, 2008
- PCPID Meeting: September 9-10, 2008
- PCPID Meeting: November 19-20, 2008
- PCPID Meeting: June 16-17, 2011
- PCPID Meeting: July 19, 2011
- PCPID Meeting: August 16, 2011
- PCPID Meeting: September 26-27, 2011
- PCPID Meeting: November 14, 2011
- PCPID Meeting: February 1, 2012
- CPID Meeting: August 9, 2012
- PCPID Meeting: September 3-5, 2014
- PCPID Meeting: February 19-20, 2015
- PCPID Meeting: April 7, 2015
- PCPID Meeting: May 11, 2015
- PCPID Meeting: August 3-4, 2015
- PCPID Meeting: November 9-10, 2015
- PCPID Meeting: February 22-23, 2016 (PDF, 259KB)
- PCPID Meeting: August 22, 2016
- PCPID Meeting: November 30 - December 1, 2016
- PCPID Meeting: March 23-24, 2017