AAMR F.Y.I.
August 2006, Vol.6, No.8

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Dear AAMR Friends and Colleagues:

• U.S. government exempts Medicaid beneficiaries in nursing homes and intermediate care facilities from controversial proof-of-citizenship requirements
• Three users of the Supports Intensity Scale share different, yet valuable uses of this planning tool for persons with intellectual disabilities
• Researchers discover one gene contributing significantly to mental retardation in persons with Down Syndrome
• Only five U.S. states screen newborns for all the 29 core disorders recommended; overall number of babies screened has nearly doubled in the past year
• Professor of social work and noted disability researcher, Dr. Susan Parish talks to AAMR F.Y.I.
• In utero exposure to DDT causes developmental delay, new research shows

U.S. GOVERNMENT EXEMPTS MEDICAID BENEFICIARIES IN NURSING HOMES AND INTERMEDIATE CARE FACILITIES FROM CONTROVERSIAL PROOF-OF-CITIZENSHIP REQUIREMENTS
President Bush announced that the administration would exempt millions of the most vulnerable Medicaid recipients in the United States, including persons with mental retardation living in nursing homes, assisted living, and intermediate care facilities, from a new law requiring proof of citizenship by showing a birth certificate, passport, or other relevant documents. Critics of the law identify dementia, lack of family contacts, and absence of paper trail as some of the major challenges preventing residents with mental retardation from receiving Medicaid benefits, had the law been applied to this group.

Read a press release from the National Center for Assisted Living and the American Health Care Association (AHCA) applauding the administration on the exemption at http://www.ahca.org/news/nr060707.htm

Also in Medicaid news, the AHCA has published a report on the shortfall between Medicaid reimbursement and allowable Medicaid costs for nursing homes in the United States for the years 2003 and 2004. Read A Report on Shortfalls in Medicaid Funding Nursing Home Care at http://www.ahca.org/brief/seidmanstudy0606.pdf

THREE USERS OF THE SUPPORTS INTENSITY SCALE SHARE DIFFERENT, YET VALUABLE USES OF THIS PLANNING TOOL FOR PERSONS WITH INTELLECTUAL DISABILITIES
Since its publication in 2004, the Supports Intensity Scale, an assessment tool for persons with intellectual disabilities, has been adopted by six U.S. states and is in use in the Netherlands, Hong Kong, and Canada, and providers across the country. We talked with three users of this planning tool to highlight the different, yet valuable uses of SIS assessments in providing person-centered services and supports to people with intellectual disabilities. The result is an article titled "What's in a SIS Score: User Experiences of the Supports Intensity Scale" published in the second issue of the SIS Vantage newsletter.

The SIS Vantage is a free, quarterly newsletter on the Supports Intensity Scale. Sign up at http://www.responsetrack.net/aamr/sis/sign_up. To read past issues of the SIS Vantage visit http://www.siswebsite.org/page.ww?name=Past+Issues&section=Newsletters

The Supports Intensity Scale is published by the American Association on Mental Retardation. If you would like to tell your constituents about the Supports Intensity Scale, download a free article on SIS here. http://www.siswebsite.org/galleries/default-file/Danarticle.pdf

RESEARCHERS DISCOVER ONE GENE CONTRIBUTING SIGNIFICANTLY TO MENTAL RETARDATION IN PERSONS WITH DOWN SYNDROME
Researchers at Stanford University have discovered that one specific gene on the chromosome responsible for Down Syndrome is responsible for the cognitive impairment that results from having the Syndrome. This discovery allows for possible treatments to focus on that specific gene rather than the entire chromosome. Down syndrome is caused by an extra copy of chromosome 21, giving persons born with it a total of three such chromosomes. Down syndrome is a major cause of mental retardation.

Read a press release on the discovery from Stanford University at http://news-service.stanford.edu/news/2006/july12/med-downsynd-071206.html

To read an article on this discovery published in Neuron, visit http://www.neuron.org/content/article/fulltext?uid=PIIS0896627306004144

To read a statement from the National Down Syndrome Society on this discovery, visit http://www.ndss.org/content.cfm?fuseaction=NwsEvt.Article&article=1859

ONLY FIVE U.S.STATES SCREEN NEWBORNS FOR ALL THE 29 CORE DISORDERS RECOMMENDED; OVERALL NUMBER OF BABIES SCREENED HAS NEARLY DOUBLED IN THE PAST YEAR
While the number of newborn babies receiving screening tests has nearly doubled in the past year in the United States, only five states including Iowa, Maryland, Mississippi, New Jersey, and Virginia administer all of the 29 tests recommended. This means that only 9 percent of all newborns are screened for all of the conditions and more than four million babies born this year will not be screened for all treatable disorders, says the latest March of Dimes Newborn Screening Report Card.

Read the report at http://www.marchofdimes.com/aboutus/15796_20475.asp

PROFESSOR OF SOCIAL WORK AND NOTED DISABILITY RESEARCHER, DR. SUSAN PARISH TALKS TO AAMR F.Y.I.
Researcher, professor, and social worker, Dr. Susan Parish is Assistant Professor of Social Work at the University of North Carolina and also a member of the American Association on Mental Retardation. Dr. Parish talks to AAMR F.Y.I. about the long-term care crisis in America and how social workers are uniquely poised to help the developmental disability community.

Read the interview at http://www.aamr.org/FYI/interview_Parish.shtml

IN UTERO EXPOSURE TO DDT CAUSES DEVELOPMENTAL DELAY, NEW RESEARCH SHOWS
A federally-funded research project by the University of California, Berkeley scientists involving the children of women who recently emigrated from Mexico to California's Salinas Valley shows that the pesticide DDT does serious harm to the human brain. The study, led by Brenda Eskenazi of the UC Berkley School of Public Health measured blood levels of DDT and one of its breakdown products, DDE, in 360 pregnant women. For each tenfold increase in DDT levels measured in the mother, the team found a corresponding two-to three-point decrease in the children's mental development scores at 12 and 24 months. The highest in utero DDT exposures in children were associated with a seven-to 10-point decrease in Bayley Scales of Infant Development mental scores, compared to the lowest exposures. Bayley is a well-known method for developmental assessment of young children.

Read a press release on the discovery at http://www.berkeley.edu/news/media/releases/2006/07/05_ddt.shtml

To read an abstract on the study published in the July 2006 issue of Pediatrics, visit http://pediatrics.aappublications.org/cgi/content/abstract/118/1/233

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Copyright 2006 American Association on Mental Retardation

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