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

CRIMINAL JUSTICE

U.S. Supreme Court says "no" to executing persons with

mental retardation; calls it cruel and unusual

"How to" guide on implementing death penalty legislation

clarifies legal quandary faced by states

DIRECT SUPPORT

Nationwide crisis in recruiting, retaining, and training

direct support professionals grows—a special report

What are service providers and organizations across the

U.S. doing to boost retention of direct support workers?

Find out in new Practice Profile Database

HEALTH/MEDICINE

Autism is "a very important public health problem" for

the U.S., says the Centers for Disease Control (CDC)

Encouraging progress made to increase folic acid intake

by women and reduce number of babies with neural tube

defects, says CDC

U.S. Surgeon General’s report highlights medical concerns

of persons with mental retardation

GENETICS

Genes and mental retardation—what do we know? Research update

from the Greenwood Genetic Center

First U.S. Advisory Committee on Genetics, Health, and Society

formed

LEGISLATION

New Help America Vote Act will make polling easier for

people with disabilities

PSYCHOLOGY

New definition of mental retardation published

Popularity of supports paradigm grows in the U.S.

and abroad

SPECIAL EDUCATION

No Child Left Behind Act affects students with mental

retardation New federal report suggests ways to

strengthen special education in America

High-stakes testing in more schools may cause students

with mental retardation to drop out

TECHNOLOGY

Palmtop computers with special software for persons with

mental retardation grow in popularity

New federal web portal launched for persons with disabilities

CRIMINAL JUSTICE
1. U.S. Supreme Court says "no" to executing persons with mental retardation; calls it cruel and unusual punishment.
On June 20, 2002, the U.S. Supreme Court ruled in a 6-3 vote that it was "cruel and unusual" to execute persons with mental retardation under the Eighth Amendment of the Constitution. The Supreme Court ruling came in the wake of Atkins v. Virginia in the case of Daryl Renard Atkins, an individual with an IQ of 59 who had never lived on his own or held a job. "The Court has recognized the consensus among the American people, even those who support the death penalty," said James W. Ellis, attorney who successfully argued Atkins v. Virginia and past president of AAMR. "They are deeply disturbed by the prospect that people with mental retardation could face execution."

2. New "how to" guide on implementing death penalty legislation clarifies legal quandary faced by states.
What constitutes mental retardation? Is it based on IQ alone? How do you evaluate mental retardation in a defendant? How do you implement death penalty legislation? With the U.S. Supreme Court ruling of June 20, 2002 that persons with mental retardation cannot be executed, states, courts, and other legal entities faced complex questions. In response to this quandary, James W. Ellis, attorney who argued Atkins v. Virginia released a guide to help state legislatures ensure that their death penalty legislation is in full compliance with constitutional requirements.

Want to know what other stories in MR and the death penalty made national headlines last year? Visit www.radaraamr.com and do a keyword search on mental retardation and criminal justice. RADAR is an online AAMR database that tracks news and trends in developmental disabilities.

DIRECT SUPPORT
1. Nation faces crisis in direct support workforce shortage.
The critical need for direct support professionals supporting persons with developmental disabilities received attention from the highest levels in the federal government last year. U.S. Labor Secretary Elaine Chao said, "Direct support workers...are critical to the success of the New Freedom Initiative." Congress passed a resolution late last year recognizing that the workforce shortage was the most serious impediment to implementing the U.S. Supreme Court Olmstead ruling. Yet, there is a growing national crisis in securing an adequate supply of qualified direct support professionals.

Visit the "What's New" section of the AAMR Reading Room at http://www.aamr.org/rr/ to read a special report, Shortage of Direct Support Professionals: A Growing Crisis.

2. What are service providers and organizations across the country doing to boost direct support retention?
In November 2002, the Centers for Medicare and Medicaid Services (CMS) launched the Practice Profile Database, a web portal that spotlights innovative practices in recruitment, training, and retention of direct support workers across the country. The database currently features 40 programs, including at least three on organizations that cater to persons with developmental disabilities. These include Hope Haven, Inc., in Iowa, the Linking Employment, Abilities, and Potential (LEAP) program in Cuyahoga County, Ohio, and OHI in Maine. To contribute profiles to this database, call toll free at 1(866) 402-4138 or email info@directcareclearinghouse.org

Visit the Practice Profile Database at http://www.directcareclearinghouse.org/practices/index.jsp

HEALTH/MEDICINE
1. New research shows an unprecedented increase in autism; CDC calls autism a "very important public health problem."
A recent study released by the Centers for Disease Control (CDC) in Atlanta, Georgia, revealed that 3.4 in every 1,000 children between the ages of 3 and 10 had diagnoses of mild to severe autism in 1996 as opposed to 4 to 5 children per 10,000 in the 1980s. Read more about this study in "Prevalence of Autism in a U.S. Metropolitan Area," in the January 1, 2003 (Vol. 289, No.1) issue of the Journal of the American Medical Association. To read a summary of the CDC autism study, visit the "What’s New" section of the AAMR Reading Room at http://www.aamr.org/rr/

Do vaccines cause autism?
2002 saw a great deal of speculation on immunizations as a potential cause of the rise in autism. The correlation between the measles, mumps, and rubella vaccination and autism was particularly debated. A study in the New England Journal of Medicine (read abstract here reported that vaccines do not cause autism. A 1999 study published in The Lancet (Volume 353, Number 9169, 12 June 1999) also pointed out that there is no association between the MMR vaccine and autism (to read full text for free, go to http://www.thelancet.com/ register, and search archive). However, popular attitudes differed. As Sharon Davis, director of professional and family services of the Arc of the United States pointed out, "Many parents are convinced that their child has autism because of getting vaccinated. This is consistently reported in the popular press. The New York Times did a major piece blaming the mercury in vaccines as the cause." (Search The New York Times archives for December 4, 2002 article by Donald G. Mcneil Jr. at www.nytimes.com)

What next?
Dr. Marshalyn Yeargin-Allsopp, medical epidemiologist at the National Center for Birth Defects and Developmental Disabilities (NCBDDD) and lead author of the CDC study told AAMR F.Y.I., "Our CDC network of 13 sites is examining the prevalence of autism in diverse communities across the U.S. and, of those, 5 sites in addition to CDC are designing studies to look at possible causes and risk factors for autism. However, results from the studies looking at the possible causes will not be available for at least 4-5 years."

2. Encouraging progress made to increase folic acid intake by women and reduce number of babies with neural tube defects, says CDC.
The Centers for Disease Control (CDC) released a 10-year report on the advantages of taking folic acid to prevent neural tube defects (NTDs). Overwhelmingly, the decline in the number of neural tube defects in the U.S. since 1992 is significant, with a 20%-30% drop in the number of cases of NTDs since the U.S. Public Health Service (USPHS) first recommended in 1992 that all women capable of becoming pregnant should consume 400 µg of folic acid a day to prevent spina bifida and anencephaly.

Read the report at http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5113a1.htm

3. U.S. Surgeon General’s report highlights medical concerns of persons with mental retardation.
In February 2002, Dr. David Satcher, 16th Surgeon General of the United States, released the Surgeon General’s Report, "CLOSING THE GAP: A National Blueprint to Improve the Health of Persons with Mental Retardation" at the annual Public Policy Forum, sponsored by AAMR, The Arc, and AUCD. In it, Dr. Satcher highlighted medical concerns of individuals with mental retardation and laid out six goals with action steps for each.

As a follow up to this report, the medicine division of AAMR is organizing a national conference from November 13-15, 2003 in Atlanta, Georgia. The conference will address the current status of health care for persons with intellectual disabilities and will explore mechanisms to improve health through improved health care. For more information on the Atlanta conference, contact Dr. Stanley Handmaker at SHandmaker@salud.unm.edu

To read the Surgeon General’s Report, visit http://www.aamr.org/Reading_Room/pdf/surgeon_generals_report.pdf

GENETICS
The mapping of human genes as a result of the Human Genome project is taking medicine to new frontiers in treatment, cure, and prevention. The field of mental retardation is no exception.

1. Genes and mental retardation—what do we know so far?
The J.C. Self Institute of Human Genetics is one of the nation’s prominent centers dedicated to research on the genetic causes of mental retardation. Part of the Greenwood Genetic Center in South Carolina, the Institute is particularly known for its research on X-linked mental retardation and posts an XLMR research update at http://www.ggc.org/xlmr.html. "At least 200 genes on the X chromosome have something to do with intellectual disability and, if damaged, can lead to mental retardation," said Dr. Roger Stevenson, director of the J.C. Institute. "So far, we can point you to 50 such genes that have been identified thanks to research done since 1991." Apart from X-related mental retardation, Dr. Stevenson’s organization is also working on finding genes related to MR on other chromosomes, and creating treatment and prevention strategies based on those findings. The Institute is also exploring whether there are other means for genes to become inactive or overactive and hence become powerful tools to contributing to the occurrence of mental retardation.

So where are we today, in terms of our understanding of the role of genes in mental retardation? "In the infancy, I would say," responds Dr. Stevenson. "In half of the cases of persons with MR, we cannot find the cause of this condition. In the half of the cases we can find the cause, 60% are genetic and 40% we can trace to such factors as environmental influences, chemical drugs, and brain injury. Some genes are involved in chemical pathways and we are just beginning to understand how they contribute to brain injury. We are also just beginning to understand developmental changes and questions such as how the structure of the brain has changed in some of these conditions and if changes alter the structure of the brain altogether or just the electricity of the brain."

Here are some online resources on genetics and mental retardation:

The Online Mendelian Inheritance Man at http://www.ncbi.nlm.nih.gov/omim/ has a complete listing of human genes and genetic disorders, and links to all articles published on a specific disorder, including mental retardation.

The International Journal of Developmental Neuroscience dedicated a special issue in June 2002 to research done by the 16 MR/DD centers around the U.S., some of which are engaged in genetic research. Click here for free full-text access to articles from this issue.

The Arc of the United States also has several informational and education materials for families on understanding genes and mental retardation at http://www.thearc.org/genome.html

2. New U.S. HHS Secretary’s Advisory Committee on Genetics, Health, and Society established.
Given the scientific breakthroughs in genetics, U.S. Health Secretary Tommy Thompson announced a new Advisory Committee on Genetics, Health, and Society last September.

To see members of this committee, visit http://www.hhs.gov/news/press/2002pres/20021223a.html

LEGISLATION
With the exception of the Help America Vote Act (P.L. 107-252), congressional legislative developments in MR/DD were slim last year. "For the second year in a row, political, economic and world events combined to produce a bleak record of achievement in the Second Session of the 107th Congress," says the December 2002 Governmental Report of The Arc of the United States.

1. Help America Vote Act (HAVA) will make polling easier for persons with disabilities.
Jim Dickson, vice-president of the American Association of People With Disabilities, explains the implications of HAVA for the disability community. "The HAVA requires an accessible voting machine in each polling place by 2006. Machines in the market now offer the ability to hear the ballot for people whose disabilities makes reading difficult. Standards will be periodically set to modernize what accessibility means under law, and there will be periodic opportunities to write into federal standards for accessibility. Accessibility for the MR/DD community means for example, placing a picture of the candidate on screen or the ballot. Each state will be developing a statewide poll worker training system. There will be opportunities for various groups, including advocates in the MR/DD community to be involved in the development of training systems. Advocates should contact the Secretary of State or Chief Election Officer to request representation on the HAVA Planning Commission.

For more information, contact Jim Dickson at (202) 955-6114.
Visit http://www.aapd-dc.org/dvpmain/downloads/HAVA%20State%20Implementation.doc to read AAPD recommendations on implementing HAVA.

In other developments, private providers across America, many of who help children and adults with mental retardation live in a home in their community, won victory on foster care tax law (P.L. 107-147) signed by President Bush last year. Read more at www.ancor.org/dev/issues/Foster_Care/foster_carebill.htm

PSYCHOLOGY
1. New definition of mental retardation published.
After 10 years of work by a panel of 11 international experts, in June 2002, AAMR launched the new definition of mental retardation in the 10th edition of Mental Retardation: Definition, Classification, and Systems of Supports. Says Dr. Marc Tassé, professor of psychiatry and co-author of the 10th edition, "We strived to keep, modify, and add elements of the definition and classification system to be consistent with the growing, and most up-to-date body of research in the field of mental retardation and developmental disabilities. We examined constructive feedback on the 1992 edition of Mental Retardation and focused on making the 2002 System consistent with the national and international understanding of the condition known as mental retardation." Nine months after the launch of the 10th edition and many workshops later, Dr. Tassé tells us how the 10th edition was received by professionals across the U.S at http://www.aamr.org/rr/FindDoc.php?keywords=&author=&title=tasse&submit=Find

Visit http://www.aamr.org/Reading_Room/pdf/faq_on_mr_definition.pdf to read frequently asked questions on the new AAMR definition of mental retardation.

To read a study that cites the AAMR definition as the most widely used definition of mental retardation in the U.S. visit, http://www.ssa.gov/disability/MentalRetardationReport.pdf

2. AAMR activities strengthen supports paradigm; popularity of supports paradigm grows abroad.
AAMR has always advocated for supports, a positive approach that shifts the focus from an individual’s deficits to supporting the unique needs of each person. In 2002, AAMR launched two initiatives to further strengthen the supports paradigm. The 10th edition of Mental Retardation launched last year is based on supports. The Association also completed the Supports Intensity Scale (SIS), the only scientific instrument to measure the level of supports required by an individual. SIS will be published later this year. Read more about this instrument in the journal article "Integration Supports in Assessment and Planning" under the "What’s New" section of the AAMR Reading Room at http://www.aamr.org/rr/

In the international arena, Quebec saw the closure of its last big psychiatric institution for persons with mental retardation, Hôpital Saint-Julien de Bernierville. The previous year, Quebec passed a policy on supports titled "From social integration to social participation: Policy of support for persons with intellectual disabilities, their families and close relatives," (not exact translation) to improve social participation of persons with intellectual disabilities. The policy elaborates nine national priorities in the area of supports and requires that every region in Quebec create an action plan based on these priorities.

In Western Canada, there was a move towards a Community Governance model of services for persons with developmental disabilities. Implemented by the Alberta Provincial Board, according to this model, the APB, in partnership with Community and Facility Boards, provides programs and services in direct service and community living, employment, community access, and specialized community supports to adults with developmental disabilities and their families and guardians. "This new governance model is creating...some wonderful success stories...and new relationships between the policy funding body, service organizations, and families and individuals," says Gail Davis, CEO of the Alberta Association of Rehabilitation Centers. "This will have families and individuals participating with the governance bodies, and community service organizations supporting people lead quality lives in their homes and neighborhood."

In Europe, the issue of inclusion was critical throughout 2002 and closely related to this were the issues of supported living, supported work, and supported education. Says Mr. Wil Buntinx of the Netherlands, "I see that nursing homes and family and home support services outside the field of mental retardation are becoming more and more interested in the new AAMR model of mental retardation. As a result, it might follow that support activities for persons with MR have an important overlap with those for people with other disabilities. Next, care providers will realize that they can serve more persons with disabilities than they typically serve by restricting their services to those based on diagnosis."

SPECIAL EDUCATION
Two federal initiatives of 2002 have an impact on special education policy and practice—the No Child Left Behind (NCLB) Act and the launch of a special report by the President’s Committee on Excellence in Special Education. The NCLB Act in particular, released by Education Secretary Rodney Paige on November 26, 2002, directly affects students with mental retardation.

1. NCLB Act affects students with mental retardation.
Dr. Sharon A. Borthwick-Duffy, professor of education at the University of California, Riverside explains the impact of the NCLB act on students with mental retardation. "Included in the new policies of the No Child Left Behind Act are assurances that students with cognitive disabilities will participate in state accountability systems and in the determination of Adequate Yearly Progress (AYP) of schools. Because standardized alternate assessment scores of no more than 0.5 percent of all students can be included in AYP determination, only students with the most significant cognitive disabilities will take alternate assessments. Hence, decisions about these tests and who will take them have important implications for all students with mental retardation. Another troubling component of the NCLB Act is the requirement that evidence-based research methods be restricted to group designs with a preference for randomized clinical trials. This policy will restrict or unnecessarily slow down the development and validation of new scientific knowledge, especially for students with MR/DD who require individualized educational intervention."

Read the executive summary of No Child Left Behind Act of 2001
at http://www.ed.gov/offices/OESE/esea/exec-summ.html

Read the Final regulations of NCLB (November 2002) at http://www.ed.gov/PressReleases/11-2002/11262002.html

To read AAMR’s resolution urging policymakers not to restrict evidence-based research to randomized clinical trials, visit the "What’s New" section of the AAMR Reading Room at http://www.aamr.org/rr/

For a summary from the Council on Exceptional Children on the "Implications of NCLB for Special Education Practice" visit http://www.cec.sped.org/pp/side-by-side09_04_02.pdf

2. New federal report suggests ways to strengthen special education in America.
On October 2, 2001, President Bush ordered the creation of the President’s Commission on Excellence in Special Education to study ways to strengthen special education in America. After a year of feedback from parents, teachers, principals, and education officials, the Commission launched a special report titled "A New Era: Revitalizing Special Education for Children and Their Families" at http://www.ed.gov/inits/commissionsboards/whspecialeducation/reports/summ.html

Read the Council on Exceptional Children response to the report at http://www.cec.sped.org/spotlight/cec_response/PresCommReportNEW.html

3. High stakes testing will result in more students with mental retardation dropping out of schools.
Says Dr. Martha E. Snell, professor of special education at the University of Virginia, "The adoption in most states of High Stakes Testing (HST) program determines who meets the academic requirements for graduation from high school (and for passing earlier grades in some states). This now-common practice will likely cause an increase in those with labels of mental retardation dropping out from school as alternative assessment will only be available to those with extensive support needs, not to those with intermittent or limited."

TECHNOLOGY
1. Palm top computers with special software for persons with mental retardation continue to grow in popularity.
Read what Dr. Michael Wehmeyer, professor of education at the University of Kansas has to say about this new device in assistive technology at http://www.aamr.org/rr/FindDoc.php?category=technology&author=&title=&submit=Find
Dr. Wehmeyer is noted for his research on the use of technology by persons with intellectual disabilities.

2. New federal web portal launched for people with disabilities.
In fall 2002, the U.S. Department of Labor Secretary Elaine L. Chao unveiled DisabilityInfo.gov (www.disabilityinfo.gov), a one-stop source of government information relevant to people with disabilities, their families, employers, and service providers. Part of President Bush’s New Freedom Initiative, this web portal provides access to disability-related information on numerous subjects, including civil rights, education, employment, housing, health, income support, technology, transportation, and community life.

The Archimedes project at Stanford; Eyegaze; and The Discrete Trial Trainer are some of the other new developments in assistive technology last year. To read headlines on these, visit www.radaraamr.com and do a keyword search on technology and mental retardation. Visit www.abledata.com/text2/news.htm to read non-media stories on technology and MR/DD in 2002.

IN MORE RECENT NEWS

President Bush announces new Interagency Working Group on Assistive Technology Mobility Devices.
On February 12, President Bush directed the Secretaries of Education; Health and Human Services; Labor; and the Commissioner of the Social Security Administration to create a working group on assistive technology mobility devices. The purpose of this group is to identify existing Federal programs and resources designed to help people with disabilities obtain assistive technology mobility devices they need for getting an education and seeking and maintaining employment.

To read more about this initiative, visit http://www.disabilityinfo.gov

States perpetuated unconstitutional discrimination toward people with disabilities, says amicus brief submitted to the U.S. Supreme Court.
AAMR joined twenty-four disability organizations to submit an amicus brief to the U.S. Supreme Court in the case of the Medical Board of California v. Hason. The brief argues that states have systematically subjected Americans with disabilities to deplorable and unconstitutional treatment, including deprivations of their most fundamental constitutional rights. These include the right to vote, access to courts, discrimination in licensing procedures, marry and form families, unfair treatment in institutions, and segregation within community settings.

Read Medical Board of California v. Hason at http://www.aamr.org/Reading_Room/pdf/hason_v_medical_board.pdf

AAMR F.Y.I. is compiled by Anna Prabhala, Editor. Please submit comments, suggestions, tips, and news to annap@aamr.org

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