2008 — Report to the President: The Promise of Research and Prevention

The 2008 Report to the President addresses two issues of vital importance to preventing and ameliorating the effects of intellectual disabilities: (1) speeding the discovery of cutting edge treatments and services through translational research and research consortiums, and (2) defeating the single most preventable cause of intellectual disabilities—fetal alcohol spectrum disorders (FASD).

Executive Summary

In fulfillment of the Executive Order to prepare an annual report to the President, the President’s Committee for People with Intellectual Disabilities submits its 2008 report, Report to the President: The Promise of Research and Prevention.

Research

According to the Institute of Medicine report, Crossing the Quality Chasm: A New Health System for the 21^st Century, the lag between scientific discovery and integration of those discoveries into practice is unnecessarily long – about 15 to 20 years. During this lag time, valuable opportunities are lost to improve the lives of individuals who could most benefit from the cutting edge discoveries that do not make it out of the laboratory setting and into clinical practice in a timely manner.

In order to address the lag time from discovery to practice, the Committee recommends that the President urge the private sector to create condition-specific research and clinical consortiums aimed at improving communication and encouraging collaboration in the fields of intellectual disabilities. The Committee further recommends that, where appropriate, the President encourage the formation of public/private partnerships to ensure the most efficient use of government research and resources.

Prevention

Fetal Alcohol Spectrum Disorder (FASD) is the single most preventable cause of intellectual disabilities and results from prenatal exposure to alcohol. Some of the primary and secondary disabilities associated with FASD include intellectual disabilities, adaptive functioning deficits, mental health problems, problems with the law, disrupted school experience and alcohol and drug problems.

According to the Substance Abuse and Mental Health Services Administration, two effective means of preventing FASD include increasing public awareness of the potentially harmful effects of prenatal alcohol exposure, and targeting those at risk for engaging in high risk alcohol consumption while pregnant. The Committee recommends that the President urge the private sector to establish a research and clinical consortium on FASD, and instruct the appropriate Federal agencies to conduct research to obtain more accurate data regarding the incidence and prevalence of FASD in the United States. The Committee further recommends that the President promote the prevention of FASD through early education, increased screening and prevention in clinical settings, and renewed dedication to public awareness of FASD through Federal health initiatives such as Health People 2010 and Healthy People 2020.