National Accessibility Summit

The Accessibility Summit 2010 is a special opportunity for persons with disabilities, families and caregivers, faith-based organizations, educators, community professionals, and government agencies to come together in one place. Attendees will return home equipped and energized with exciting ideas that can make a real difference in their lives, homes, churches, and communities.

Following is a PowerPoint presentation by Laverdia Taylor Roach, "An Inside Perspective of the President’s Committee for People with Intellectual Disabilities."

A Sister’s Request …

Eunice Kennedy, sister of the late President John F. Kennedy, telephoned the President at the White House only days following his inauguration, and asked him to do something to help their sister diagnosed with “mental retardation” and other Americans diagnosed with this disability.

A President's Response

• President John F. Kennedy, in response to his sister’s request, established a Blue Ribbon Panel and charged the group to study the problem of mental retardation and provide a report describing issues and concerns, and offering recommendations.
• President Lyndon B. Johnson, in response to a recommendation of the Kennedy Blue Ribbon Panel, established the President’s Committee on Mental Retardation (PCMR) to provide advice and assistance via an annual report describing the state of the national efforts to combat mental retardation and ameliorate its effects.

Definition

“Intellectual disability” is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18.

“Intellectual Functioning” refers to general mental capacity, such as learning, reasoning, problem solving, and so on.

Source: American Association on Intellectual and Developmental Disabilities, 2009

One criterion to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 or as high as 75 indicates a limitation in intellectual functioning.

Limitations in adaptive behavior can be determined by standardized tests, and are comprised of three skill types: conceptual, social, and practical skills.

About 87% of people with intellectual disabilities will only be a little slower than average in learning new information and skills, and in adaptive behavior. The remaining 13% of people with intellectual disabilities score below 50 on standardize IQ tests and experience increased difficulty learning new information and skills, and in adaptive behavior.

Source: National Dissemination Center for Children with Disabilities, 2009

Mission

The PCPID Executive Order and Charter define and describe the Committee’s mission:

To provide advice and assistance to the President of the United States and the Secretary of Health and Human Services on a broad range of topics that impact the daily lives of people with intellectual disabilities and the field of Intellectual Disabilities.

Undergirding the Committee’s mission is the goal to improve the quality of life that is experienced by people with intellectual disabilities, by upholding their full citizenship rights, independence, self-determination, and life-long participation in their respective communities.

History

• Establishment of the Blue Ribbon Panel on Mental Retardation by President John F. Kennedy.
• Research and report of the Blue Ribbon Panel on Mental Retardation.
• Establishment of the PCMR by President Lyndon B. Johnson in 1966, through an Executive Order to advise the President of the United States and the Secretary of Health and Human Services on issues related to the field of Intellectual Disabilities and citizens with this disability.
• Changing of the Committee’s name in 2003 by Executive Order of President George W. Bush from PCMR to PCPID.
• Continuation of the Committee through 9/30/2011 by Executive Order of President  Barack Obama, and renewal of the PCPID Charter by Health and Human Services  (HHS) Secretary, Kathleen Sebelius.

Ex officio and Citizen Membership

PCPID is comprised of 13 ex officio members and 21 citizen members:

• Attorney General of the United States
• Secretary of Interior
• Secretary of Commerce
• Secretary of Labor
• Secretary of Health and Human Services
• Secretary of Housing and Urban Development
• Secretary of Transportation
• Secretary of Education
• Secretary for Homeland Security
• Chief Executive Officer of the Corporation for National and Community Services
• Commissioner of Social Security
• Chair of the Equal Employment Opportunity Commission
• Chairperson of the National Council on Disability

General Membership Profile

One-third to one-half of the Committee membership is comprised of individuals with intellectual disabilities, parents and family members, and self-advocates.

Remaining Committee members include:

• Special educators and other professionals from institutions of higher learning, including University
• Centers of Excellence in Developmental Disabilities
• Business and community leaders and stakeholders
• Representatives of the scientific and research community

Current Professional/Vocational Membership Profile

Diversity

• African American
• Asian
• Caucasian
• Hispanic
• Native American

Priority Agenda

I) Recently Published Reports to the President

• The Forgotten Generation—1999
• A Charge We Have to Keep—A Road Map to Personal and Economic Freedom for Persons with Intellectual Disabilities in the 21st Century—2004
• Holding Truths to be Self Evident: Affirming the Value of People with Intellectual Disabilities—2007
• Report to the President: Dignity Through Employment—2009

II) Examples of Support of Presidential Goals and Influence on Presidential Agenda

• Kennedy—Blue Ribbon Panel
• Johnson—Establishment of PCMR
• Nixon—Deinstitutionalization
• Reagan—Focus on the untapped economic resource of workers with intellectual disabilities
• Clinton—Full and Lifelong Community Inclusion
• Bush—New Freedom Initiative and Committee name change from PCMR to PCPID
• Obama—Comprehensive Disability Agenda

III)  Support and engage intra-agency and cross-agency collaboration with ex officio and other agencies that support and serve people with intellectual disabilities

• Administration on Developmental Disabilities (ADD)
• Office of Community Services (OCS)
• Administration for Native Americans (ANA)
• Office of Child Support Enforcement (OCSE)
• The Administration on Children, Youth, and Families (ACYF)
• Office of Public Affairs (OPA)
• Office of Refugee Resettlement (ORR)
• Office of Planning, Research, and Evaluation (OPRE)
• National Commission on Children and Disasters (NCCD)

Frequently Asked Questions

What is the President’s Committee for People with Intellectual Disabilities?

PCPID is a Federal Advisory Committee comprised of citizen and ex officio members who are appointed by, and serve at the pleasure of, the sitting President of the United States.

What is the purpose of the President’s Committee for People with Intellectual Disabilities?

The purpose of PCPID is to provide advice and assistance to the President of the United States and the Secretary of the Department of Health and Human Services on a broad range of topics pertaining to intellectual disabilities.

Where and how often does the President’s Committee for People with Intellectual Disabilities meet?

Meetings of PCPID are usually held in Washington, DC. The PCPID Charter mandates at least three meetings a year.

Does the President’s Committee for People with Intellectual Disabilities publish reports or papers on intellectual disabilities?

PCPID is mandated to submit, through the HHS Secretary, an annual report to the President of the United States.  The Report is the vehicle through which Committee members provide advice to the President regarding the status of the national effort to prevent and ameliorate the effects of intellectual disabilities, and to improve the quality of life that is experienced by individuals diagnosed with this disability.

How do Members of PCPID determine Committee goals and objectives?

Because members of PCPID are appointed by, and serve at the pleasure of, the President of the United States, the Committee’s goals are supportive of the goals established and set forth by the President, and publicized as part of the President’s Disability Agenda.

How does one become a member of PCPID?

A person who is interested in becoming a member of PCPID may apply through the White House Office of Personnel.  An application form, available on the White House website, must be completed and submitted directly to the White House. The applicant’s resume and biographical information must accompany the application.

Individuals may also be recommended for Committee membership by their local Congressional representatives or senior officials in the Administration.

Future Challenges

• Clarification of terminology
• Removal of negative labeling
• Intensification of efforts to heighten public awareness regarding capabilities of people with intellectual disabilities
• Support of full citizenship rights
• Prevention (primary, secondary, and tertiary)

Contact Information

Laverdia Taylor Roach
Acting Executive Director
President's Committee for People with Intellectual Disabilities
ACF “Disability Hiring Initiative Champion”
Phone: 202-619-0634
Fax: 202-205-9519
E-Mail: Lroach@acf.hhs.gov