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March 2008, Vol.8, No.3
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Dear AAIDD Friends and Colleagues:
- Epidemiological study links low maternal education with intellectual disabilities in offspring.
- Newly discovered syndrome accounts for 3 out of every 1,000 cases of intellectual disability.
- Discover the effect of the environment on the health of children at a free AAIDD event to be held in Michigan in April 2008.
- People with intellectual disabilities vote for the first time in Kosovo.
- Version française du Supports Intensity Scale est maintenant disponible sur le site Internet d’AAIDD/French version of the Supports Intensity Scale assessment is now available for purchase through the AAIDD website.
- New online assessment tool launched for state disability personnel to evaluate emergency preparedness for people with intellectual disabilities.
EPIDEMIOLOGICAL STUDY LINKS LOW MATERNAL EDUCATION WITH INTELLECTUAL DISABILITIES IN OFFSPRING
By applying a public health approach, researchers have discovered that low maternal education is a key indicator for increased risk of intellectual disability in the general population. The study results are published in the March 2008 issue of the American Journal on Mental Retardation (AJMR). Study author, Dr. Derek Chapman, Assistant Professor of Epidemiology and Community Health at the Virginia Commonwealth University explains, “This approach to the study of disabilities is critical because an exclusive focus on prevention via medical interventions ignores the tremendous impact we can have by addressing social factors for which low education is a marker. If infants born to women with a high school education or less had the same risk as those born to college-educated women, there would be a 75% reduction in mild intellectual disabilities. Although genetic and biologic factors clearly play a role, their risk can be attenuated and there is a greater potential impact by addressing social factors such as maternal stress, birth spacing, preconception care, the child-rearing environment, and access to early and comprehensive intervention for at-risk infants and children.”
To read “Public Health Approach to the Study of Mental Retardation” by Derek A. Chapman, Keith G. Scott, and Tina L. Stanton-Chapman, click here. To see a table of contents from the current issue of AJMR, click here. AJMR is published by the American Association on Intellectual and Developmental Disabilities (AAIDD).
NEWLY DISCOVERED SYNDROME ACCOUNTS FOR 3 OUT OF EVERY 1,000 CASES OF INTELLECTUAL DISABILITY
Dr. Evan E. Eichler at the University of Washington School of Medicine, and a team of international researchers have discovered that people who lack a certain large segment of DNA have a previously unrecognized syndrome characterized by mental retardation, seizures, and slight physical abnormalities. It is estimated that similar deletions and rearrangements of DNA may account for 15 to 20 percent of mental retardation. Dr. Eichler and his colleagues discovered the missing DNA segment after screening more than 700 British and Italian patients with mental retardation or seizure disorders. To read a press release on the discovery issued by the Howard Hughes Medical Institute, visit http://www.hhmi.org/news/eichler20080217.html. To read “A recurrent 15q13.3 microdeletion syndrome associated with mental retardation and seizures” in the February 2008 issue of the journal, Nature Genetics, click here.
In other research news, University of Adelaide geneticist, Dr. Jozef Gécz and a team of Belgium and UK scientists have discovered that the duplicated genes, dubbed HSD17B10 and HUWE1, produce excess protein, which appears to be the trigger leading to intellectual disability. To read “Submicroscopic Duplications of the Hydroxysteroid Dehydrogenase HSD17B10 and the E3 Ubiquitin Ligase HUWE1 Are Associated with Mental Retardation”, in the February issue of the American Journal of Human Genetics, click here (The article is available to read online for free).
DISCOVER THE EFFECT OF THE ENVIRONMENT ON THE HEALTH OF CHILDREN AT A FREE AAIDD EVENT TO BE HELD IN MICHIGAN IN APRIL 2008
Pediatrician, Dr. Nicholas Newman, will join representatives of three non-profit groups including the American Association on Intellectual and Developmental Disabilities (AAIDD) to talk about the environmental links to health effects in children on April 3rd, 2008 in Midland, Michigan. The event, being hosted by the Michigan chapter of AAIDD, is at no cost to the general public. Says Laura Abulafia, Director of the AAIDD Environmental Health Initiative, “A national coalition of individuals and organizations are currently involved in a public health initiative that aims at eliminating harmful chemicals used in everyday products, by mandating state level chemical policy reform. Currently, Michigan has participated in this national coalition by identifying several environmental health goals in state legislation, including work on getting toxic chemicals out of children’s products. The Michigan Network for Children’s Environmental Health (MNCEH) is taking a lead on promoting safer environmental health practices in your community.”
Registration is required for all attendees. To download a registration form and a flyer, please click here. To learn more about the AAIDD Environmental Health Initiative, visit http://www.ehinitiative.org/index.htm. Questions? Email laura@aaidd.org
PEOPLE WITH INTELLECTUAL DISABILITIES VOTE FOR THE FIRST TIME IN KOSOVO
In an effort to build upon the self-advocacy movement of persons with disabilities in Kosovo, Kosovo Mental Disability Rights Initiative (K-MDRI) recently assisted “Ne Per Ne” peer support group members in fully understanding and participating in Kosovo’s historic winter elections to choose national and municipal assembly members and mayors. “Ne Per Ne,” which means “We for Ourselves,” is Eastern Europe’s largest peer support group for persons with intellectual disabilities, started by MDRI. Learn more in a press release issued by MDRI, click here.
VERSION FRANÇAISE DU SUPPORTS INTENSITY SCALE EST MAINTENANT DISPONIBLE SUR LE SITE INTERNET D’AAIDD
La version française du Supports Intensity Scale appelée, l'Echelle d'intensité du soutien (SIS-F), un outil d’évaluation unique mesurant les besoins de soutien quotidiens et les buts personnels de personnes présentant une déficience intellectuelle, est maintenant disponible sur http://bookstore.aaidd.org. La SIS-F peut également être achetée en composant le 1-301-604-1340 ou en télécopiant un formulaire de commande au 1-301-206-9789. Dr Diane Morin, professeure à l'Université du Québec à Montréal, a dirigé la traduction de l'Echelle d'intensité du soutien en français. Pour en savoir plus sur le processus de traduction et de normalisation de la SIS-F, cliquez ici. Pour télécharger une table des matières et un chapitre extrait du Manuel de l'utilisateur, consultez cette page.
Pour des enquetes sur la distribution de la SIS-F, s’il vous plait envoyez un courier electronique à books@aaidd.org. Pour des informations sur le SIS, visitez le site Internet à www.siswebsite.org.
A FRENCH VERSION OF THE SUPPORTS INTENSITY SCALE ASSESSMENT IS NOW AVAILABLE THROUGH THE AAIDD WEBSITE
A French language translation of the Supports Intensity Scale assessment tool, titled l'Echelle d'intensité du soutien (SIS-F), is now available for purchase at http://bookstore.aaidd.org. The French version of SIS can also be purchased by calling 1-301-604-1340 or by faxing a book order form to 1-301-206-9789. Dr. Diane Morin, professor at the University of Quebec at Montreal, led the translation of the French SIS. To learn more about the translation process, click here. To download a table of contents and an excerpt from the User's Manual, please click here. For publishers and organizations interested in distributing the French version of SIS in other countries, please send a query to books@aaidd.org.
The Supports Intensity Scale is published by the American Association on Intellectual and Developmental Disabilities (AAIDD) and is currently adopted by 14 U.S. states. Learn more at www.siswebsite.org.
NEW ONLINE ASSESSMENT TOOL LAUNCHED FOR STATE DISABILITY PERSONNEL TO EVALUATE EMERGENCY PREPAREDNESS FOR PEOPLE WITH INTELLECTUAL DISABILITIES
The National Association of State Directors of Developmental Disabilities Services (NASDDDS), in collaboration with the Institute on Community Integration (ICI), has launched an assessment tool for state developmental disabilities officials to evaluate their preparedness plans for people with intellectual and developmental disabilities during emergencies or disasters. The assessment produces reports that tell you whether or not your agency is prepared various areas including, operations, management activities, and communication.
To read an FAQ on the NASDDDS Emergency Response Preparedness Self Assessment Instrument assessment tool, visit http://rtc.umn.edu/erp/misc/faq.asp.
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