AAMR F.Y.I.
October 2003, Vol.3, No.10

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

Dear AAMR Friends and Colleagues:

IN THIS ISSUE:

IT’S PRACTICAL, SCIENTIFIC, AND A ONE-OF-A-KIND ASSESSMENT TOOL THAT HELPS YOU PLAN MEANINGFUL SUPPORTS FOR PERSONS WITH MENTAL RETARDATION. READ MORE ABOUT THE NEW SUPPORTS INTENSITY SCALE.
As the American Association on Mental Retardation (AAMR) prepares to publish the Supports Intensity Scale, here’s more on how this unique assessment tool can help you plan meaningful supports for persons with mental retardation. The SIS provides a direct, reliable, and valid measurement of supports requirements in 57 life activities in addition to a clear ranking of support needs in 16 medical conditions and 13 problem behaviors. A dynamic scoring system presents assessment data in several ways. The SIS provides an overall supports needs score that indicates the level and intensity of support needs in 7 areas of personal competence as well as a percentile ranking of a person’s support needs based on national field test data. A graphic plot of information recorded shows a visual display of areas of high intensity vs. low intensity of supports needs. The SIS encourages feedback from the respondent and those most close to him/her so that a clear picture of the person’s needs, preferences, and goals for life is provided to create individualized, person-centered plans.

Find out more about this consumer-directed tool, including why SIS was developed, practical uses, and frequently asked questions, at http://www.aamr.org/Reading_Room/pdf/sis_overview.pdf

FOUR NEW GENES LINKED TO PRADER-WILLI AND ANGELMAN SYNDROMES
Researchers at the University of Pennsylvania School of Medicine discovered four new genes normally found on chromosome 15 that, when lost, may contribute to Prader-Willi and Angelman syndromes. Prader-Willi and Angelman syndromes occur in one in every 12,000 to 15,000 births, and Angelman is characterized by severe mental retardation in addition to seizures and movement disorders. The new findings can open the door for better diagnosis of chromosome 15 rearrangements, including deletions that cause Prader-Willi and Angelman syndromes, and duplications found in some cases of autism.

Read more at http://www.uphs.upenn.edu/news/

FOLLOW UP CONFERENCE ON GROUNDBREAKING U.S. SURGEON GENERAL’S REPORT ON HEALTH CONCERNS OF PERSONS WITH MENTAL RETARDATION TO BE HELD IN NOVEMBER
As a follow up to the U.S. Surgeon General’s report of 2002 highlighting medical concerns of individuals with intellectual disabilities, AAMR and six health organizations are sponsoring a national conference titled "A National Health Forum: Reducing Health Disparities for People with Developmental Disabilities by Improving the Quality of Health Care," from November 13-15, 2003 in Atlanta, Georgia. Keynote speakers at the conference include the 16th U.S. Surgeon General, Dr. David Satcher; Bernie Marcus, co-founder and former Chairman and CEO of Home Depot and philanthropist; and Vince Campbell, Health Scientist at the Centers for Disease Control and Prevention.

To read more about the conference, including who should attend and how to register, visit http://www.aamr.org/Events/pdf/Health_Care_Conference_Program.pdf

RESULTS FROM A NATIONAL SURVEY: GETTING REFERRALS AND FINDING PROVIDERS WITH APPROPRIATE TRAINING ARE TWO MOST PRESSING PROBLEMS FACED BY PARENTS OF CHILDREN WITH MENTAL RETARDATION AND AUTISM.
Over a third of children with autism, over a fifth with mental retardation, and over a fifth with other types of special health care needs had problems obtaining needed care from specialty doctors in the preceding year, according to a national survey of 2,220 families of children with special health care needs in 20 states. Results from this study have been published in the October 2003 issue of the journal, Mental Retardation. The most common problems included getting referrals and finding providers with appropriate training. Children with unstable health conditions, autism, or those whose parent was in poor health were at greater risk for problems. Primary Medicaid coverage and public secondary health coverage were associated with fewer access problems.

For free access to "Access to Specialty Medical Care for Children With Mental Retardation, Autism, and Other Special Health Care Needs" visit http://www.aamr.org/Reading_Room/pdf/MR_Oct03article.pdf

CDC ANNOUNCES NEW FUNDS FOR TRACKING OF NATIONAL DATA ON DEVELOPMENTAL DISABILITIES
The Centers for Disease Control and Prevention (CDC) has announced the availability of $700,000 in funds for the surveillance and management of research data related to developmental disabilities, such as Autism Spectrum Disorders and other developmental disabilities. The deadline for the application is November 14, 2003 and the closing date for the letter of intent is October 8. Read more on this initiative at http://www.cdc.gov/od/pgo/funding/04014.htm

You can obtain the application forms at www.cdc.gov/od/pgo/forminfo.htm or by calling CDC Procurement and Grants Office Technical Information Management at 770-488-2700.

NEW REPORT MAKES RECOMMENDATIONS ON HOW THE HIGHER EDUCATION ACT (HEA) CAN BETTER PREPARE STUDENTS WITH DISABILITIES FOR POST SECONDARY EDUCATION
A new report from the National Council on Disability (NCD) offers insights into how the reauthorization of the Higher Education Act (HEA) can better support students with disabilities to achieve equal postsecondary outcomes. Students with disabilities, estimated at nearly 10 percent of all college students, currently experience outcomes far inferior to those of their non-disabled peers. However, research shows that they are more likely to obtain positive professional employment outcomes after degree completion than their peers.

Read "People with Disabilities and Postsecondary Education" at http://www.ncd.gov/newsroom/publications/education.html

WHAT IS MENTAL RETARDATION, A HISTORICAL ACCOUNT OF THE COMPETING PARADIGMS ON MENTAL RETARDATION NOW AVAILABLE AS A PDF E-BOOK AT www.disabilitybooksonline.com
AAMR is pleased to announce that What is Mental Retardation: Ideas for an Evolving Disability by noted scholars Stephen Greenspan and Harvey Switzky is now available in PDF format at AAMR Disability BooksOnline, the e-books portal for major AAMR works. Individual chapters can also be purchased through this site. What is Mental Retardation rounds up competing paradigms and perspectives on the issue of what constitutes mental retardation by experts in the field of developmental disabilities.

Visit AAMR Disability BooksOnline at www.disabilitybooksonline.com

ACCESS ONLINE FACT SHEETS ON WHAT BENEFITS AND SUPPORT YOUR STATE HAS TO OFFER FAMILIES SUPPORTING PERSONS WITH MENTAL RETARDATION
The Arc of the United States now has state-specific information on benefits, supports, and services for families raising children with mental retardation and related developmental disabilities at http://www.thearc.org/familyguide/


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