AAMR F.Y.I. Vol. 3, No. 5

AAMR F.Y.I.
May 2003, Vol. 3, No. 5

If you'd like to subscribe, click here.

Dear AAMR Friends and Colleagues:

IN THIS ISSUE:

New GAO report gives roundup of latest newborn screening procedures used in the 50 U.S. states and D.C. Legislation on improved resources for newborn screening coming soon, say Senators Dodd and DeWine.

The American Journal on Mental Retardation (AJMR) is the most cited journal in special education.

U.S. Department of Education seeks feedback on proposed rules of accountability for students with severe cognitive disabilities by May 13,2003.

Coming soon—global survey of HIV/AIDS among people with disabilities.

What are the best and worst ways to motivate direct support staff? Find out from a survey of community agency supervisors.

New study finds direct evidence of link between Down syndrome and neural-tube defects.

In South Carolina, people with disabilities will now find it easier to control their care at home.

Star of 2003 Oscar nominated Collector of Bedford Street to attend AAMR Annual Meeting in Chicago for special movie screening.

NEW GAO REPORT GIVES ROUNDUP OF LATEST NEWBORN SCREENING PROCEDURES IN EACH U.S. STATE AND WASHINGTON, D.C. LEGISLATION ON IMPROVED RESOURCES FOR NEWBORN SCREENING COMING SOON, SAY SENATORS DODD AND DEWINE
The number of genetic and metabolic disorders screened in newborns ranges from 4-36 tests in U.S. states, with most states screening for 8 or fewer disorders, according to a report released by the U.S. General Accounting Office (GAO). The study commissioned by Senators Chris Dodd (D-CT) and Mike DeWine (R-OH) also finds that:
With the exception of PKU, congenital hypothyroidism, and sickle cell diseases, there are no federal guidelines on disorders that should be screened in newborns.

All state programs notify a health care provider of the results, but fewer than half routinely notify parents directly of abnormal results.

In deciding which disorders to include, states generally consider similar criteria, such as how often a disorder occurs in the population, whether an effective screening test exists, and whether the disorder is treatable.

Almost all states provide education on their screening program to parents and providers, but fewer than one-fourth inform parents that they can obtain testing for additional genetic and metabolic disorders not included in the state’s programs.

Authority for deciding which disorders to include often rests with state health departments or boards of health, with screening of certain disorders mandated by law.

To read Newborn Screening: Characteristics of State Programs, visit http://www.gao.gov and look for GAO-03-449 under "Search" button on top right.

Senators Dodd and DeWine say legislation on improved resources for newborn screening is coming soon. Read more at http://dodd.senate.gov/press/Releases/03/0416.htm

THE AMERICAN JOURNAL ON MENTAL RETARDATION (AJMR) IS THE MOST CITED JOURNAL IN SPECIAL EDUCATION
The American Journal on Mental Retardation (AJMR) has received more citations than any other journal in special education, according to the 2001 (latest available edition) impact factor rankings published in the Journal Citation Reports (JCR). AJMR was evaluated from a pool of 22 journals in special education and was reported as having received 1,696 citations total to date. The Journal of Learning Disability comes in second with 1257 citations. AJMR also ranks #1 in immediacy index, a measure of how quickly a journal article is cited after publication. Overall, AJMR ranks #2 in special education.

Read more about AJMR at http://aamr.allenpress.com/aamronline/?request=index-html

U.S. DEPARTMENT OF EDUCATION SEEKS COMMENTARY ON PROPOSED RULES OF ACCOUNTABILITY FOR STUDENTS WITH SEVERE COGNITIVE DISABILITIES BY MAY 13,2003
The U.S. Department of Education is seeking feedback by May 13, 2003 on proposed amendments to Title I of the Elementary and Secondary Education Act of 1965 to increase accountability of academic achievements of students with most significant cognitive disabilities. The regulations, if enacted, will affect some students with mental retardation. The government is specifically seeking feedback on issues affecting implementation of the definition of "students with the most significant cognitive disabilities," currently defined as covering students with intellectual functioning and adaptive behavior three or more standard deviations below the mean. This definition impacts the cap (currently proposed at 1%) set on the number of students with disabilities who may be included in the accountability measures using alternate achievement standards.

Read more on the proposed regulations and how to give feedback visit http://a257.g.akamaitech.net/7/257/2422/14mar20010800/edocket.access.gpo.gov/2003/pdf/03-6653.pdf

To read U.S. Department of Education press release visit http://www.ed.gov/PressReleases/03-2003/03242003a.html

COMING SOON—A GLOBAL SURVEY ON HIV/AIDS AMONG PEOPLE WITH DISABILITY
Here’s your chance to contribute to a global survey on HIV/AIDS and Disability conducted by the World Bank and the Yale University School of Public Health. "Little attention has been given to the risk of HIV/AIDS for individuals who have a physical, sensory, intellectual, or mental health disability before becoming infected," says Dr. Nora Groce of the Yale University School of Public Health in The Lancet. Dr. Groce is one of the principal investigators in the survey. "It is commonly assumed that disabled individuals are not at risk. They are incorrectly thought to be sexually inactive, unlikely to use drugs, and at less risk for violence or rape than their non-disabled peers. Yet a growing body of research indicates that they are actually at increased risk for every known risk factor for HIV/AIDS." Further, adults with mental disorders are more likely to report a medium or high chance of becoming infected with HIV, are more likely to be tested for HIV infection, and are more likely to expect to be tested within the next 12 months than are members of the general population, reports a 1999 US National Health Interview Survey published in the Journal of Acquired Immune Deficiency Syndromes (2003; 32: 77-79).

Visit http://www.aamr.org/Reading_Room/pdf-/HIV_AIDS_Disability_annc.pdf to read more about the survey and how your organization can contribute to this initiative. The survey itself will be made public later this week.

WHAT ARE THE BEST AND WORST WAYS TO MOTIVATE DIRECT SUPPORT STAFF? FIND OUT FROM A SURVEY OF SUPERVISORS IN LATEST ISSUE OF MENTAL RETARDATION
88% of supervisors surveyed in community agencies reported that it was very or extremely important for supervisors to motivate their staff, although only 53% reported that supervisors performed well in this regard. Concerning the best way to motivate staff, the most common response category was interacting positively and providing positive feedback for work performance. Regarding the worst way to motivate, the most common response category was interacting negatively with staff and providing negative feedback.

Results from this survey are discussed in the latest issue of Mental Retardation (MR), including how to ensure that community support staff experience a motivating work environment.

In related news, AAMR will soon publish a training curriculum for supervisors of direct support staff on the principles of positive behavior support. Titled "Positive Behavior Support Training," this curriculum also trains supervisors to be effective managers. A separate direct support edition of the curriculum will also be published. For questions on content and availability of this curriculum email books@aamr.org

NEW STUDY FINDS DIRECT LINKAGE BETWEEN DOWN SYNDROME AND NEURAL-TUBE DEFECTS
An investigative study into whether Down’s syndrome and neural-tube defects (NTD) arise more often in the same family than would be expected from the incidence of each disorder considered separately, revealed direct evidence of a link between Down’s syndrome and NTD. The findings from this study are published in The Lancet (Volume 361, Number 9366, April 19, 2003). You can access a free summary of Frequency of Down’s syndrome and neural-tube defects in the same family by visiting www.lancet.com, registering, and searching e-archives for the above listing.

IN SOUTH CAROLINA, PEOPLE WITH DISABILITIES WILL FIND IT EASIER TO CONTROL THEIR CARE AT HOME
South Carolina became one of the first states to receive approval from the U.S. Health and Human Services (HHS) for a self-directed home and community-based services program under the HHS Independence Plus Initiative. This plan gives people with disabilities greater control over their Medicaid services. Under the waiver, eligible Medicaid beneficiaries will receive personal care services, adult day services, respite services and other services needed to help them maintain independent lives.

Read more at http://www.hhs.gov/news/press/2003pres/20030311.html

STAR OF 2003 OSCAR NOMINATED FILM TO ATTEND AAMR ANNUAL MEETING IN CHICAGO FOR SPECIAL MOVIE SCREENING
Larry Selman, subject of the Oscar nominated Collector of Bedford Street, and the film’s producer, Alice Elliott, will be guests at a special screening of the movie on Thursday, May 22 at the 127th AAMR annual meeting in Chicago. Larry Selman, a sixty-year-old man with mental retardation, spends his time raising money for charity. The film focuses on the relationship between Larry and his West Village neighborhood community.

To learn more on activities at the AAMR annual meeting, download a program brochure at http://www.aamr.org/Events/pdf/-aamr_prelim_program_2003.pdf Also at this year’s Annual Meeting is a special screening of the PBS documentary Refrigerator Mothers, a narrative of how seven mothers faced tough times raising children with autism.

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/