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Senate Bill 673
Senator Judith Zaffirini has filed legislation (SB 673 attached) that would require school districts to allow students with disabilities who have completed their 4 years of high school, but who will continue to receive some special education services from the district the next year, to be able to participate in graduation exercises with their same-age peers. At the graduation ceremony , they would be given some other type of certificate and then given their real diploma upon graduation without participating in a second ceremony.
As many of you know all too well, some districts will not allow students to participate with their peers, telling them instead that they can come back when they are 21 (or whatever year they finally complete their IEP) and participate with that year's class. Of course, they most likely wouldn't even know the students in that graduating class, and the students who are not in special education wouldn't know them either. This practice has been very hurtful and disappointing to some students and their parents around the state.
Some districts do already allow participation if that's what the student and parent want, but in those districts that do not, there has been no recourse. Only passage of a state law can ensure students are allowed this opportunity. Some school organizations will no doubt oppose the bill under the guise of "local control", despite the fact that it will cost the state no money and is very important to that group of students most likely to still need special education services between the ages of 18-21.
The bill will be heard first in the Senate Education Committee. It could be as soon as Tuesday, February 27, though a hearing has not yet been scheduled. If it passes from Senate Education, it will go to the full Senate. The process then will be repeated on the House side. The first step is getting it passed by the Senate Education Committee.
If you are interested in testifying in person when the bill comes up for a hearing, let Rona Statman of The Arc of Texas know. She can be reached at (512) 454-6694 or rona.statman@thearcoftexas.org.
View the roster of the Senate Education Committee.
View the Bill - SB 673
Submitted by Kay Lambert
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What's Lost In Prenatal Testing
Why Encourage Testing for Down Syndrome
By Patricia E. Bauer
Sunday, January 14, 2007
She was a fresh-faced young woman with a couple of adorable kids, whiling away an hour in the sandbox at the park near my home. So was I, or so I thought. New in town, I had come to the park in hopes of finding some friends for myself and my little ones.
Her eyes flicked over to where my daughter sat, shovel gripped in a tiny fist, and then traveled quickly away. The remark that followed was directed to the woman next to her, but her voice carried clearly across the playground. "Isn't it a shame," she said, an eyebrow cocked in Margaret's direction, "that everyone doesn't get amnio?"
It's been more than 20 years, but I saw the face of that woman again when I read about the recommendation from the American College of Obstetricians and Gynecologists (ACOG) this month that all pregnant women get prenatal screening for Down syndrome. I worry that universal screening brings us all closer to being like that woman at the sandbox -- uninformed, judgmental and unable to entertain the possibility that people with disabilities have something to offer.
The ACOG news release notes that the recommendations are based on consistent scientific evidence and will allow obstetricians and gynecologists to best meet their patients' needs. Until now, women 35 or older were automatically offered genetic testing for Down syndrome; under the new guidelines, less invasive and earlier screening options will be extended much more broadly.
What's gone undiscussed in the news coverage of the guidelines seems to be a general assumption that reasonable people would want to screen for Down syndrome. And since nothing can be done to mitigate the effects of an extra 21st chromosome in utero, the further assumption is that people would be reasonable to terminate pregnancies that are so diagnosed.
Certainly, these recommendations will have the effect of accelerating a weeding out of fetuses with Down syndrome that is well underway. There's an estimated 85 to 90 percent termination rate among prenatally diagnosed cases of Down syndrome in this country. With universal screening, the number of terminations will rise. Early screening will allow people to terminate earlier in their pregnancies when it's safer and when their medical status may be unapparent to friends and colleagues.
I understand that some people very much want this, but I have to ask: Why? Among the reasons, I believe, is a fundamental societal misperception that the lives of people with intellectual disabilities have no value -- that less able somehow equates to less worthy. Like the woman in the park, we're assigning one trait more importance than all the others and making critical decisions based on that judgment.
In so doing, we're causing a broad social effect. We're embarking on the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.
Much of what people think they know about intellectual disabilities is inaccurate and remains rooted in stigma and opinions that were formed when institutionalization was routine. In fact, this wave of terminations and recommendations comes as people with Down syndrome and other intellectual disabilities are better educated and leading longer, healthier and more productive lives than ever.
Nowhere in the fine print of the ACOG recommendations are these misconceptions or the advances of recent years recognized. Perhaps this is not surprising: OB-GYNs concern themselves primarily with mothers and well babies, not people with intellectual disabilities. But it's frightening, too, when you consider the millions of lives affected by their guidance, explicit or otherwise.
Federally funded research has found that physicians have lower expectations for people with intellectual disabilities than do other professionals. Some 81 percent of medical students polled by Special Olympics in 2005 said that they are "not getting any clinical training" about people with intellectual disabilities. The Hastings Center found that 80 percent of genetics professionals polled said they personally would terminate a pregnancy involving Down syndrome. These are the people advising pregnant women in the harried days when the clock is ticking.
Here's my fervent hope: that calls for universal prenatal screening will be joined by an equally strong call for providing comprehensive information to prospective parents, not just about the tests but also about the rich and rewarding lives that are possible with disabilities. If physicians and genetics professionals are willing to learn from people with disabilities and their families, they can disseminate the nuanced, compassionate message at the core of diversity and human rights: All people have value and dignity and are worthy of celebration.
Plastic shovels no longer captivate Margaret. She's more interested in her school roommates, her part-time job, the Red Sox and, at least recently, wrestling on TV. She knows how to hold an audience and how to bring down the house with a one-liner. And, like most of my relatives, she knows how to be an absolute pill some of the time. Such is life.
That day in the sandbox, I went home and cried. I didn't know what to say. I didn't know whether the woman was right. Today, I know. She was wrong.
The writer is a former Post reporter and bureau chief. Her e-mail address is patriciaebauer@aol.com.
>From the Washington Post
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Golly, What Did Jon Do? Released: 1/24/2007
Newsweek
January 29, 2007
Golly, What Did Jon Do?
BYLINE: George F. Will
SECTION: THE LAST WORD; Pg. 72
What did Jon Will and the more than 350,000 American citizens like him do to tick off the American College of Obstetricians and Gynecologists? It seems to want to help eliminate from America almost all of a category of citizens, a category that includes Jon.
Born in 1972, Jon has Down syndrome. That is a
congenital condition resulting from a chromosomal defect that causes varying degrees of mental retardation and some physical abnormalities, such as low muscle tone, small stature, a single crease across the center of the palms, flatness of the back of the head and an upward slant to the eyes (when Jon was born, Down syndrome people were still commonly called Mongoloids). There also is increased risk of congenital heart defects, childhood leukemia and Alzheimer's disease. Down syndrome, although not common, is among the most common congenital anomalies--47.9 per 100,000 births (compared with 77.7 with cleft lips or palates, which also can be diagnosed in utero, and which sometimes result in abortions).
As women age, their risk of having a Down syndrome baby increases. It has become standard practice for women older than 35 years old to be offered genetic counseling and diagnostic testing. But because of the higher fertility rates of women under 35, such women have 80 percent of Down syndrome babies. So new ACOG guidelines recommend that all pregnant women, regardless of age, be offered such counseling and testing.
The ACOG guidelines are formally neutral concerning what decisions parents should make on the basis of the information offered. But what is antiseptically called "screening" for Down syndrome is, much more often than not, a search-and-destroy mission: At least 85 percent of pregnancies in which Down syndrome is diagnosed are ended by abortions.
Medicine now has astonishing and multiplying abilities to treat problems of unborn children in utero, but it has no ability to do anything about Down syndrome (the result of an extra 21st chromosome). So diagnosing Down syndrome can have only the purpose of enabling--and, in a clinically neutral way, of encouraging--parents to choose to reject people like Jon as unworthy of life. And as more is learned about genetic components of other abnormalities, search-and-destroy missions will multiply.
Nothing--nothing --in the professional qualifications of obstetricians and gynecologists gives them standing to adopt policies that predictably will have, and seem intended to have, the effect of increasing abortions in the service of an especially repulsive manifestation of today's entitlement mentality--every parent's "right" to a perfect baby. Happily, that mentality is not yet universal: 214 American families are looking for Down syndrome children to adopt.
Jon, a sweet-tempered man, was born the year before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies. And he was born just as prenatal genetic tests were becoming routine. Since then, it has become routine to abort babies like Jon because they are like Jon. Without this combination of diagnostic advances and moral regression, there would be more people like Jon, and the world would be a sweeter place.
America has, however, become a more congenial, welcoming place for its Down syndrome citizens who have escaped "screening." On the second day of Jon's life, the hospital's geneticist asked his parents if they intended to take him home. Nonplused, they answered that taking a baby home seemed like the thing to do.
Jon was born at the end of the era in which institutionalization of the retarded was considered morally acceptable, but in what was still an era of gross ignorance: In the first year of Jon's life, a network-television hospital drama featured a doctor telling parents of a Down syndrome newborn that their child would probably never be toilet-trained. But ignorance lingers. There are doctors who still falsely counsel parents that a Down syndrome person will never read, write or count change. Such doctors should not try to get between Jon and his USA Today sports section.
In 1972, the odds were heavily against Jon's living as long as he already has lived. Just 25 years ago, the life expectancy of Down syndrome people was 25. Today, because of better health care, better mental stimulation in schools and homes, and better community acceptance, their life expectancy is 56.
Jon has a disability, but he also has some things most men would like to have--season tickets for Nationals and Orioles baseball, Redskins football, Capitals hockey and Georgetown University basketball. He gets to and from games (and to his work three days a week for the Nationals at RFK Stadium) by himself, taking public transportation to and from his apartment.
Jon experiences life's three elemental enjoyments--loving, being loved and ESPN. For Jon, as for most normal American males, the rest of life is details.
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Voices For Change: Beneficiaries Paving The Way To Work
On February 6 and 7, 2007, a groundbreaking summit was held in Atlanta, GA, titled "Voices for Change: Beneficiaries Paving the Way to Work." This first-ever summit was attended by delegates representing every U.S. state, District of Columbia, American Samoa, Northern Mariana Islands, Puerto Rico and the U.S. Virgin Islands, raising their voices in support of enabling Social Security disability beneficiaries to work and become economically self-sufficient. The delegates included individuals with a wide variety of disabilities, ages, and backgrounds. As an unintended consequence of public policy, many government programs discourage individuals with disabilities from even attempting work. Countless people with disabilities cannot risk losing public health insurance, which is tied to eligibility for the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs. These programs strictly limit the amount people can earn without risking the very benefits they rely upon. Others fear that their disability may make it impossible to work at a later date, but they may be unable to get their benefits quickly reinstated.
The delegates drafted numerous recommendations for changes that would support people with disabilities who want to work. Their recommendations included:
- Specific changes to SSI, SSDI, and other government programs
- Improved programs enabling work and support needed for work
- Access to health care and related services that people can take to work
- Better outreach and clearer, simpler materials about programs, in accessible formats
- An ongoing voice for beneficiaries in the Social Security Administration (SSA) policy development and program operations.
Immediately following the summit, the delegates briefed their recommendations to invited representatives from SSA, Centers for Medicare and Medicaid Services (CMS), the White House, Senate Finance Committee, Social Security Advisory Board, U.S. Department of Labor, U.S. Department of Education, and the National Council on Disability. The recommendations will be available soon in a report on the summit. The summit was hosted by the Ticket to Work and Work Incentives Advisory Panel. The Panel provides advice to the President, Congress, and SSA on the implementation of the Ticket to Work and Work Improvement Act of 1999, a federal statute designed to bring people with disabilities into the workforce. In accordance with "Nothing About Us Without Us", summit planning was accomplished with a group of seven current/recent SSA beneficiaries from across the country. These planners participated in the selection of the 55 delegates from a group of more than 300 nominated.
CONTACT:
Jill Houghton
Executive Director, Ticket to Work and Work Incentives Advisory Panel
202-358-6419 - phone Jill.Houghton@ssa.gov
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Stanford researchers say drug improves mice with Down syndrome
IT'S TOO EARLY TO TELL IF THE DRUG WILL BE SUCCESSFUL IN PEOPLE
Mercury News - Feb. 25, 2007
In a study that could hold promise for children with Down Syndrome, Stanford University researchers have found that a long-discredited drug can improve the mental abilities of mice with the genetic disorder, which causes mental retardation in humans.
The mice were better able to navigate mazes and recognize new objects after receiving the drug, and the gains continued for months after treatment stopped. The researchers ultimately hope to test the drug, known as pentylenetetrazole or PTZ, in people with Down syndrome. ``It's a very exciting piece of work,'' said David Patterson, a Down syndrome researcher at the University of Denver who was not involved in the study. ``This is really the first time that I've seen such a striking effect in terms of reversing the memory and learning difficulties the mice have.''
Both Patterson and the Stanford researchers caution, however, that the research is preliminary and it is too early to tell if the drug will be successful in people. Although PTZ was once used as a heart stimulant, it was taken off the market and now is used only in research. The process of doing further tests and getting government approval to use it as a Down syndrome treatment could take more than a decade. A genetic disorder caused by an extra copy of the 21st chromosome, Down syndrome occurs in one of every 733 live births. More than 350,000 Americans have the condition, according to the National Down Syndrome Society. The disorder typically causes mild to moderate mental retardation and can increase the risk for Alzheimer's disease, leukemia and congenital heart defects.
Because people with Down syndrome are now living much longer, with a typical life expectancy of 56 years, researchers increasingly are studying ways to improve their quality of life. Some studies have examined whether Alzheimer's drugs could improve their mental abilities, with little success, said Craig Garner, co-director of Stanford's Down Syndrome Research Center and one of the authors of the new study. In the study, published online today by the journal Nature Neuroscience, mice genetically engineered to display the symptoms of Down Syndrome were fed 17 daily doses of milk containing PTZ. After treatment, they performed as well as ``normal'' mice in running mazes and recognizing objects for up to two months.
It took some time for the drug to work -- an effect seen with many psychiatric drugs, including antidepressants. The mice also received two other compounds similar to PTZ, which worked about as well. The ``normal'' mice did not see any cognitive benefit from the compounds. Stanford researchers believe that PTZ and the other compounds may work because they block a neurotransmitter that slows brain function. That neurotransmitter is believed to work too well in Down syndrome patients, hampering learning and memory. Garner said these compounds help ``release the brakes'' on chemical impulses in the brain that drive cognition. ``If you drive the car with the brake on, you don't get anywhere,'' he said.
The Stanford researchers want to continue studying PTZ, rather than the other compounds used in the study, because it was once approved for use in humans.
The drug pentylenetetrazole was used as a heart stimulant and has been used experimentally to study seizures. When used in high doses, it can cause convulsions. The U.S. Food and Drug Administration removed the drug from the market in 1982 because it was not effective in treating disease and could be harmful, Garner said. But Garner believes the drug can be safely used in very small doses.
``We think we're slowly being able to understand what's causing reduced cognitive ability in people with Down syndrome,'' he said, and there are new approaches and strategies that could improve their quality of life. But, he added, ``This is not a cure. We're not making a kid with Down syndrome normal. There are limits to what medicine can do.'' Contact Barbara Feder Ostrov at bfeder@mercurynews.com or (408) 920-5064.
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