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January 2009, Vol.9, No.1
The American Association on Intellectual and Developmental Disabilities (AAIDD) wishes all the readers of AAIDD F.Y.I. a happy year 2009. AAIDD is also pleased announce its newly-designed website at www.aaidd.org.
Dear AAIDD Friends and Colleagues:
- New planning guide helps professionals and families through healthcare and end-of-life decision making.
- Encouraging study on a new method of scoring IQ in children with intellectual disabilities likely to reveal more useful information for parents.
- Two new references help professionals better administer and score the Supports Intensity Scale assessment tool.
- Late preterm babies are about 3.4 times as likely to develop cerebral palsy as full-term babies and 25 percent more likely to develop developmental delays and intellectual disabilities.
- Special scholarships now available for high school seniors and college students with parents with disabilities.
- New survey of 2,500 parents of children with autism reveals a startling picture of the life-long fears and anxieties faced by families.
NEW PLANNING GUIDE HELPS PROFESSIONALS AND FAMILIES THROUGH HEALTHCARE AND END-OF-LIFE DECISION MAKING
People Planning Ahead: A Guide to Communicating Healthcare and End-of-Life Wishes by Leigh Ann Creaney Kingsbury is a new planning guide that helps families as well as professionals in developmental disability, geriatric care, and social work develop healthcare and end-of-life care plans in a way that is respectful and person centered. Published by the American Association on Intellectual and Developmental Disabilities (AAIDD), People Planning Ahead is a 61-page step-by-step planning guide that comes with a CD-ROM with electronic forms to record and store information on the individual. People Planning Ahead is based on the principles of Essential Lifestyle Planning, an approach that ensures that the person's wish remains the chief focus, not their medical condition or other matters.
To read excerpts, reviews, and purchase People Planning Ahead, visit http://bookstore.aaidd.org.
To enquire about AAIDD training programs on People Planning Ahead, send an email to books@aaidd.org. AAIDD training is based on the person-centered planning practices contained in People Planning Ahead and addresses such issues as how to help people make healthcare decisions, identify surrogate decision makers, and develop plans for care at the end of life.
ENCOURAGING STUDY ON A NEW METHOD OF SCORING IQ IN CHILDREN WITH INTELLECTUAL DISABILITIES LIKELY TO REVEAL MORE USEFUL INFORMATION FOR PARENTS
Researchers at the U C Davis M.I.N.D. Institute have come up with a new method of scoring IQ tests taken by children with fragile X syndrome, a genetic disorder that causes intellectual disability and autism in children. The new method shows promise of revealing more information on the long-term learning potential of the child. The study identifies problems with current IQ tests in terms of gathering information on the strengths and weaknesses of the individual. The study is published in the Journal of Neurodevelopmental Disorders. Click here to read an abstract of “A solution to limitations of cognitive testing in children with intellectual disabilities: the case of fragile X syndrome” by David Hessl et al.
To read a news release on the study from the U C Davis M.I.N.D. institute, click here.
TWO NEW REFERENCES HELP PROFESSIONALS BETTER ADMINISTER AND SCORE THE SUPPORTS INTENSITY SCALE ASSESSMENT TOOL
A new guide from the American Association on Intellectual and Developmental Disabilities (AAIDD) clarifies issues that arise from administering and scoring the Supports Intensity Scale (SIS) assessment tool. The SIS is a planning tool that measures support needs of a person with an intellectual disability so that service plans can be based on the individual’s needs and goals. The guide, developed by the SIS authors with feedback from AAIDD senior trainers and state users, also contains a Frequently Asked Questions section. To download Supports Intensity Scale: Supplemental Administration and Scoring Procedures , visit www.siswebsite.org.
Also, an updated Guidelines for Interviewing People With Disabilities, a best practices guide, is available for downloading at www.siswebsite.org.
LATE PRETERM BABIES ARE ABOUT 3.4 TIMES AS LIKELY TO DEVELOP CEREBRAL PALSY AS FULLTERM BABIES AND 25 PERCENT MORE LIKELY TO DEVELOP DEVELOPMENTAL DELAYS AND INTELLECTUAL DISABILITIES
After studying more than 140,000 babies born between years 2000 and 2004 ranging from preterm (30-37 weeks) to full term (37-41 weeks), Dr. Joann Petrini of the March of Dimes and her colleagues across the country found that late preterm babies were more than three times as likely to be diagnosed with cerebral palsy as full term babies. They also found that late preterm babies were at an increased risk for developmental delay or intellectual disability. Late preterm births, or births that occur between 34 and 36 weeks (approximately 4 to 6 weeks before the mother’s due date), account for more than 70% of preterm births.
The study titled “Increased Risk of Adverse Neurological Development for Late Preterm Infants,” by Petrini et. al. is published in the Journal of Pediatrics and is available as a free download here. To read a news release on the study, click here.
SPECIAL SCHOLARSHIPS NOW AVAILABLE FOR HIGH SCHOOL SENIORS AND COLLEGE STUDENTS WITH PARENTS WITH DISABILITIES
Through the Looking Glass (TLG), an organization focused on research, training, and services for families in which someone has a disability or medical issue, is now offering ten separate scholarships, each worth $1000, to college students and high school seniors with parents with disabilities. To learn more, click here.
NEW SURVEY OF 2,500 PARENTS OF CHILDREN WITH AUTISM REVEALS A STARTLING PICTURE OF THE LIFE-LONG FEARS AND ANXIETIES FACED BY FAMILIES
In cooperation with the Autism Society of America, Easter Seals surveyed over 2,500 parents of children with autism and typically-developing children about daily life, relationships, independence, education, housing, employment, finances, and healthcare. Results showed that nearly 80 percent of families are extremely or very concerned about their child’s independence as an adult; only 14 percent feel that their child will be able to make life decisions; and only 17 percent think their child will make friends. Further, families report that they’re “financially drowning,” with concerns for their child’s financial future. To learn more about the “Living with Autism Study” and its findings, click here.
AAIDD F.Y.I. is compiled by Anna Prabhala, Editor and is published by the American Association on Intellectual and Developmental Disabilities (formerly AAMR). Please submit comments, suggestions, tips, and news to annap@aaidd.org. For more information on becoming an AAIDD member, visit /Membership/index.shtml. To purchase AAIDD publications, visit http://bookstore.aaidd.org.
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