AAMR F.Y.I.
October 2004, Vol.4, No.10

Visit http://www.aamr.org/FYI/ to access current and past issues of this monthly newsletter.

Dear AAMR Friends and Colleagues:


IN THIS ISSUE:


NEW LEGISLATION ANNOUNCED TO INCREASE WAGES OF DIRECT SUPPORT PROFESSIONALS
New legislation amending Title XIX of the Social Security Act was announced by U.S. Representatives Lee Terry (R-NE) and Lois Capps (D-CA) at the recent governmental activities seminar of the American Network of Community Options and Resources (ANCOR) in Washington. The legislation is designed to provide more funds to states to increase wages of direct support professionals, who provide services to persons with disabilities.

Read a press release on the legislation at http://www.ancor.org/2004/issues/wageandhour/PressReleaseLegBill9-21-04.PDF

COMING SOON! GUIDE ON INCLUDING PERSONS WITH DEVELOPMENTAL DISABILITIES IN THE SUPPORTS PLANNING PROCESS
Including people with disabilities in the supports planning process yields valuable insights, empowers the individual, and significantly affects their quality of life. The Supports Intensity Scale (SIS), published by the American Association on Mental Retardation (AAMR), will soon have a Guide that explains how to integrate self-advocates and persons with developmental disabilities into the supports assessment interview process. The SIS is a planning tool dedicated to understanding the support needs of persons with developmental disabilities.


For queries on Guidelines for Including People with Disabilities as Respondents When Administering the Supports Intensity Scale and its availability email books@aamr.org

SCIENTISTS DISCOVER A CAUSE OF NEURODEGENERATION AND MENTAL RETARDATION
Researchers at the St. Jude Children's Research Hospital in Memphis, Tennessee, found that excess accumulation of a fat molecule called GM1-ganglioside (GM1) in brain cells disrupts the folding of newly assembled proteins into their proper shapes, triggering nerve degeneration and mental retardation in children. The disease, called GM1 gangliosidosis, disrupts the normal function of brain cells and causes them to self-destruct.

To read an abstract of an article published on this discovery in Molecular Cell, visit http://www.molecule.org/content/article/abstract?uid=PIIS1097276504005131

To read a press release on the discovery, visit http://www.eurekalert.org/pub_releases/2004-09/sjcr-dop090904.php


POLL FINDS UNPRECEDENTED INCREASE IN FOLIC ACID CONSUMPTION AMONG WOMEN OF CHILDBEARING AGE
The 2004 Gallup/March of Dimes Birth Defects Foundation survey on folic acid consumption among women of childbearing age records an unprecedented increase—eight percentage points from 2003—in the proportion of women using vitamins containing folic acid daily. Results show that 40% of women of childbearing age are taking a vitamin containing folic acid every day, suggesting a substantial positive change in behavior that has not been previously observed since the survey started in 1995. Consumption of B vitamin folic acid by women of childbearing age reduces the occurrence of neural tube defects by 50%-70%.

To read "Use of Vitamins Containing Folic Acid Among Women of Childbearing Age--United States, 2004" in the September 17 issue of the Morbidity and Mortality Weekly Report published by the Centers for Disease Control, visit http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5336a6.htm


NEW FEDERAL POLICY INCLUDES PEOPLE WITH DISABILITIES IN EMERGENCY PREPAREDNESS INITIATIVES
At the first meeting of the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities at the U.S. Department of Homeland Security on September 20, senior government officials announced policy initiatives to better integrate people with disabilities in the emergency preparedness effort.

Read more at http://www.dhs.gov/dhspublic/display?content=4024


REPORT EXAMINES HOW THE FEDERAL GOVERNMENT DEFINES DISABILITY IN DIFFERENT SURVEYS
A report by the AARP examines how four national surveys conducted by the federal government in the U.S. define and measure a critical aspect of disability--whether the disability limits the person’s ability to perform daily activities.
Read Disability: Federal Survey Definitions, Measurements, and Estimates at http://research.aarp.org/il/dd98_disability.pdf


AAMR F.Y.I. is compiled by Anna Prabhala, Editor. Please submit comments, suggestions, tips, and news to annap@aamr.org


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