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May 2009, Vol.9, No. 5
Deadline for registration for the Annual Meeting of the American Association on Intellectual and Developmental Disabilities (AAIDD) in New Orleans, LA, is May 8, 2009. To learn more about special workshops, plenary sessions, and registration information, click here.
Dear AAIDD Friends and Colleagues:
- Study of 818 children with cerebral palsy across 6 European countries calls for better provision for children to participate equally with others in life.
- Data from the seventh edition of the State of the States in Developmental Disabilities study shows latest national trends in family support services for people with intellectual disabilities in the U.S. through year 2006.
- Henry Claypool is appointed new Director of U.S. Office on Disability.
- Training for disability and palliative care professionals based on principles of person-centered thinking skills contained in People Planning Ahead by Leigh Ann Kingsbury now available through AAIDD.
- More than 70 researchers worldwide have collaborated to identify nine new genes that when inactivated, lead to intellectual disability.
STUDY OF 818 CHILDREN WITH CEREBRAL PALSY ACROSS 6 EUROPEAN COUNTRIES CALLS FOR BETTER PROVISION FOR CHILDREN TO PARTICIPATE EQUALLY WITH OTHERS IN LIFE
Some European countries could make a better provision for children with cerebral palsy to allow them to participate in life on an equal basis with others, concludes a study published in BMJ. The 818 children were randomly selected from southeast France, southwest France, southwest Ireland, west Sweden, north England, Northern Ireland, east Denmark and central Italy. Parents and children were interviewed about their participation in 10 main areas of daily life, such as mealtimes, communication, relationships, school and recreation. Physical pain was strongly associated with lower levels of participation.
To read the full study titled “Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European study” by Jérôme Fauconnier et al., click here.
To read a news release on the study, click here.
DATA FROM SEVENTH EDITION OF THE STATE OF THE STATES IN DEVELOPMENTAL DISABILITIES STUDY SHOWS LATEST NATIONAL TRENDS IN FAMILY SUPPORT SERVICES FOR PEOPLE WITH INTELLECTUAL DISABILITIES THROUGH YEAR 2006
The State of the States in Developmental Disabilities study by Dr. David L. Braddock has been tracking data on family support services in the United Sates for over two decades now. Data from the latest seventh edition of the book shows that between years 2000 and 2006, the number of individuals receiving family support services increased by over 108,000 (34%). Total adjusted expenditures for family support increased from $1.3 billion to $2.3 billion during that same period. In the 2 years between 2004 and 2006, there was an increase of 43,000 families supported nationwide, from 385,579 to 428,803 families.
To read an overview of family support data from the latest edition of the study, download an article titled “Family Support Services for Persons with Intellectual and Developmental Disabilities: Recent National Trends” by Mary C. Rozzolo et al., from the April 2009 issue of Intellectual and Developmental Disabilities, click here.
For comprehensive information on family support services as well as developmental disabilities spending across the United States, learn more about the seventh edition of the State of the States in Developmental Disabilities at http://bookstore.aaidd.org.
HENRY CLAYPOOL IS APPOINTED NEW DIRECTOR OF THE U.S. OFFICE ON DISABILITY
The U.S. Department of Health and Human Services (HHS) announced the selection of Henry Claypool as Director of the HHS Office on Disability. Mr. Claypool has 25 years of experience developing and implementing disability policy at the federal, state, and local levels, and he has personal experience with the nation's health care system from the perspective of an individual with a spinal injury. As Director of the Office on Disability, Mr. Claypool will serve as the primary advisor to the HHS Secretary on disability policy and will oversee the implementation of all HHS programs and initiatives pertaining to Americans with disabilities.
To read a news release from HHS on Mr. Claypool’s appointment, click here.
TRAINING FOR DISABILITY AND PALLIATIVE CARE PROFESSIONALS BASED ON PRINCIPLES OF PERSON-CENTERED THINKING SKILLS CONTAINED IN PEOPLE PLANNING AHEAD MANUAL BY LEIGH ANN KINGSBURY NOW AVAILABLE THROUGH AAIDD
People Planning Ahead: Communicating Healthcare and End-of-Life Wishes is a planning manual for families and professionals in palliative care, social work, and geriatric care to ensure that loved ones receive care respecting their wishes and conforming to their personal, cultural, and religious beliefs during times of chronic and terminal illness, or severe disability. The American Association on Intellectual and Developmental Disabilities (AAIDD), publisher of the book, now offers training programs by author Leigh Ann Kingsbury, based on the principles of person-centered thinking skills developed by the Learning Community for Person Centered Practices. Training programs vary from one-day presentations to more detailed workshops.
To enquire about AAIDD training programs, please send an email to books@aaidd.org. To find out more about People Planning Ahead, visit http://bookstore.aaidd.org.
MORE THAN 70 RESEARCHERS WORLDWIDE HAVE COLLABORATED TO IDENTIFY NINE NEW GENES THAT WHEN INACTIVATED, LEAD TO INTELLECTUAL DISABILITY
A collaboration between more than 70 researchers across the globe has uncovered that nine new genes on the X chromosome play a role in learning disability, and that when these nine genes are knocked-out, they lead to intellectual disability. The international team studied almost all X chromosome genes in 208 families with learning disabilities. The team also found that approximately 1-2% of X chromosome genes, when knocked-out, have no apparent effect on an individual's ability to function in the ordinary world. “We sequenced 720 out of the approximately 800 known genes on the X chromosome in more than 200 families affected by X-linked learning disabilities,” explains Professor Mike Stratton, from the Wellcome Trust Sanger Institute. “This is the largest sequencing study of complex disease ever reported.”
The study, titled “A systematic, large-scale resequencing screen of the X chromosome coding exons in mental retardation” by Patrick S. Tarpey et al., is published in Nature Genetics.
To read an abstract on this study, click here.
To read a news release on the study from the Wellcome Trust Sanger Institute, click here.