AAMR F.Y.I.
December 2003, Vol.3, No.12

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

Dear AAMR Friends and Colleagues:

IN THIS ISSUE:

U.S. HOUSE OF REPRESENTATIVES PASSES THE DIRECT SUPPORT PROFESSIONAL WORKFORCE RESOLUTION
Close on the heels of the U.S. Senate Resolution this October, the U.S. House of Representatives voted unanimously to pass the Direct Support Professional Workforce Resolution, signaling a major commitment to developing a stable direct care workforce for persons with developmental disabilities. "Finally, the dedication of over 310,000 direct support professionals is on record in both the House and the Senate as being a vital service for all Americans who depend on outside support," said Rene L. Pietrangelo of The American Network of Community Options (ANCOR), an organization that played a vital role in the passage of the Resolution

To read a copy of the House Resolution, visit http://thomas.loc.gov/ and search for H.CON.RES. 99 in the "Bill Number" search box.

To read more about the ANCOR National Advocacy Campaign for the direct support profession, visit http://www.supportnac.org/default.asp

A TRAINING SEMINAR ON THE NEW AAMR SUPPORTS INTENSITY SCALE COMING SOON TO A CITY NEAR YOU!
Starting January 2004, the American Association on Mental Retardation (AAMR) in cooperation with Psycho-Educational Services will offer a series of one-day seminars around the country on the new Supports Intensity Scale (SIS). The SIS is a unique assessment instrument that makes it possible for professionals to measure the level of practical supports required by persons with mental retardation to lead a normal, independent life in society. Conducted by Dr. Brian Bryant, co-author of the SIS, the workshops will include an overview of how to score, administer, and interpret the SIS, and a discussion of the client/surrogate interview process, case studies, and uses of aggregate SIS data.

Visit http://www.psycho-educational.com/pages/805296/index.htm to learn more about the SIS workshops and how to register.

To learn more about the Supports Intensity Scale, visit www.aamr.org

NEW CONGRESSIONAL STUDY PROBES INVOLVEMENT OF PROTECTION AND ADVOCACY AGENCIES IN DEINSTITUTIONALIZATION LAWSUITS
Based on concerns raised by some parents that national Protection and Advocacy (P&A) agencies emphasize deinstitutionalization lawsuits over other activities, the General Accounting Office, the research arm of the U.S. Congress, conducted a study of national lawsuits and related activities in three states–California, Maryland, and Pennsylvania. The study examined the extent to which P&A agencies engaged in litigation related to deinstitutionalization; how P&A agencies have communicated with parents and legal guardians regarding these lawsuits; and the role P&A agencies have played in monitoring the health and well-being of deinstitutionalized individuals.

Read the report titled Protection and Advocacy Systems: Involvement in Deinstitutionalization Lawsuits on Behalf of Individuals with Developmental Disabilities at http://www.gao.gov/new.items/d031044.pdf

NEW SURVEY RECORDS POSITIVE PERCEPTIONS OF DIRECT SUPPORT STAFF IN MENTAL RETARDATION SERVICES
While there is substantial evidence on staff burnout and stress among direct care workers, little is known about their positive impressions vis-à-vis the profession. A new survey of direct support professionals published in the January 2004 issue of the American Journal on Mental Retardation (AJMR) reveals a range of positive perceptions held by direct care staff working with persons with mental retardation.

Read the outcomes of the survey at http://www.aamr.org/Reading_Room/pdf/AJMR_survey.pdf

To access the table of contents and abstracts of articles published in the January 2004 issue of AJMR, visit http://aamr.allenpress.com/aamronline/?request=get-toc&issn=0895-8017&volume=109&issue=1

STUDY OFFERS NEW INSIGHT INTO RETT SYNDROME, A MAJOR CAUSE OF MENTAL RETARDATION IN GIRLS
A group of researchers at the Children’s Hospital in Boston and the Whitehead Institute of Biomedical Research have identified the function of the protein involved in causing Rett Syndrome, a neurological disorder that causes mental retardation as well as cerebral palsy and autism-like symptoms. Scientists say this discovery could be the first significant advance in Rett Syndrome research in years. Rett Syndrome affects one out of approximately 15,000 female babies worldwide.

Click here to read an abstract of this study reported in Science.

Read the press release issued by the Whitehead Institute of Biomedical Research at http://www.wi.mit.edu/nap/features/nap_feature_rett.html

SHOULD DOWN SYNDROME TESTING BE LIMITED TO MATERNAL AGE ONLY?
A new study suggests that offering blood tests to screen every pregnant woman for the risk of Down Syndrome may be more effective than using standard age cutoffs for amniocentesis–the dominant method used today for prenatal Down syndrome screening. Down syndrome is associated with mental retardation. "Twenty years ago, the only way to identify women at risk was to offer amnio to those older than 35. That makes no sense any longer," says Dr. Rebecca Smith-Bindman of the University of California, San Francisco, who co-authored the new study that supports screening-based instead of age-based decisions.

Click here to read an abstract of the study titled "Prenatal screening for Down syndrome in England and Wales and population-based birth outcomes" published in October 2003 issue of the American Journal of Obstetrics and Gynecology.

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

Access past issues of AAMR F.Y.I. at www.aamr.org/FYI/. To subscribe, visit http://www.responsetrack.net/aamr/sign_up

© Copyright 2003 American Association on Mental Retardation

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