U. S. healthcare fails people with mental retardation, says report

Note to readers: links to news articles may not work after a few weeks, as news media remove current stories to their archives. The link may take you to the archives section, where, for a fee, you can view the article.

Feb. 19, 2002 — The U.S. healthcare system has “failed to respond to changes in the lives of people with mental retardation,” says a report released Feb. 11 by U.S. Surgeon General David Satcher, saying that as attention to people with mental retardation increased, health care did not. It was Satcher’s last official act as Surgeon General.

The report, an overview of “how American healthcare fails the nation’s 7 million people with mental retardation,” notes that people with mental retardation received inferior care in the nation’s residential institutions, with surgery denied and dental care consisting of “pulling out all the teeth.” A 1995 discovery by Special Olympics officials that nearly 20 percent of the athletes competing in that year’s Games were in such poor health that “they needed immediate medical care,” as Special Olympics’ Timothy P. Shriver told NPR’s Joseph Shapiro, led to the Surgeon General’s report.

As people with retardation have ” moved from residential institutions into family and community living settings, the nation’s healthcare system has not kept pace” said Satcher. Shriver calls it a result of “low expectations.” People with mental retardation “are seen as less important than others.” For an overview of the report, go to http://www.specialolympics.org/

A five-minute report from NPR’s Joseph Shapiro can be downloaded as an audio file by going to http://www.npr.org and entering “Joseph Shapiro” in the search box.

The report, “Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation,” is the result of a national conference held in Washington, D.C., in December. A webcast of the conference is archived at the National Institutes of Health. To view the webcast, visit the Past Events page at NIH Videocasting and search for “mental retardation”.

The “Closing the Gap” report is available online athttp://www.surgeongeneral.gov/topics/mentalretardation/ The document is available online only in Adobe Acrobat PDF format; the file size is 1.2 megabytes. Readers of this E-Letter can complain to the Office of Surgeon General regarding the inacessibility of this report by emailing the webmaster of the Surgeon General’s website (you may want to remind them of obligations under Section 508) at SGWebSite@osophs.dhhs.gov — on their webpage at http://www.surgeongeneral.gov/access.htm they note that Sec 508 applies only to new material; but you may wish to point out to them that this file was put online in Feb. 2002, and thus constitutes “new material.”

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Poverty exacerbates disabling conditions, says study

ÊThe prevalence of disability has increased markedly in children between 1979 and 2000, says a new study in the current (March, 2003) issue of the journal Archives of Pediatrics and Adolescent Medicine, but far moreso in black children. “Black children have higher rates of disability primarily owing to their increased exposure to poverty,” say researchers.

Using information from CDC National Health Interview Surveys from1979-2000, the reasearchers analyzed data on 419,843 children younger than 18 years — 22,758 with a disability.

“The prevalence of disabling conditions increased 47 percent over the years in whites and 77 percent in blacks,” reported the ASsociated Press. “By 1999-2000, 67 out of 1,000 black youngsters and about 60 out of 1,000 whites had disabling conditions, and blacks were 13 percent more likely to be afflicted.”

Read the study abstract

Obtain full text of article ($9) at http://archpedi.ama-assn.org/subs/login.html

Contact the study’s principal author, Paul W. Newacheck, DrPH, at the Institute for Health Policy Studies, University of California, San Francisco, 3333 California St, Suite 265, San Francisco, CA 94118 (e-mail: pauln@itsa.ucsf.edu).

More about the CDC’s National Health Interview Survey

Related resource: “U. S. healthcare fails people with mental retardation, says report”

More about the prevalence of disability found by the 2000 Census

Read more about the economics of disability

Center to study disability community views on Human Genome Project

Dec. 2, 2003 — Researchers at the University of Kansas plan to analyze the concerns expressed by individuals with developmental disabilities, mental illness and genetically linked disabilities to the ethical, legal and social implications of the Human Genome Project. The University’s Beach Center on Disability was recently awarded nearly $1 million by the National Institutes of Health’s National Human Genome Research Institute to conduct the 3-year study, and will conduct focus groups and interviews in Kansas City, Kan.; Kansas City, Mo.; New York City; Washington, D.C.; and Raleigh-Durham, N.C.

“Not much has been done to bring the disability community into the public discourse on the Human Genome Project,” said Matthew Stowe, assistant research professor, who will direct the three-year research project, adding that genetic research in general “generates concern over the possibility of genetic discrimination, violations of privacy and even the specter of a new eugenics movement.”

The Beach project will be part of the unique Ethical, Legal and Social Implications Program that was built into the Human Genome Project “in recognition of the awesome responsibilities of the new knowledge the genome project would generate,” according to a press release from the University of Kansas.

“The Human Genome Project could blur the lines between what is a disability and what is not,” Stowe pointed out. “As we learn more about our genetic potential for disease, for example, we may see that we are all, in some way, on a continuum of disability.”

The Beach Center on Disability and the KU Center on Developmental Disabilities are two of the 12 research centers affiliated with the Schiefelbusch Institute for Life Span Studies.

Contact: Matthew Stowe, Beach Center, (785) 864-0596;

Read the press release

Read story from the Nov. 25 Lawrence (KS) Journal World

Human Genome Project Information

Analyzing Genetic Discrimination in the Workplace (2001 remarks of then-EEOC Commissioner Paul Miller)