This story in Time magazine also caught a lot of attention on our CDSC listserv. The article is tough enough to take but the title is rather shocking. The letter to the editor I sent in follows. I had to re-write it several times to try to get the tone down below a scream. I'm not sure if I quite got there or not.

The Down Dilemma: Is a life with the syndrome worth living? A first-trimester test raises the question earlier than ever

By CLAUDIA WALLIS Posted Monday, Nov. 14, 2005

Sheila and Peter Hebein learned that their first and only child had Down syndrome on the day he was born, in 1972. "I remember kind of stopping breathing," Sheila recalls. Prenatal testing was rare in those days, and because she was only 30, she was not a candidate. "One of the most challenging things about that day is that you're on a great high because you just had a baby," she says. "Then someone comes in and says, 'Yeah, you had a baby, but ... ,' and how they say that but is critical." The Hebeins, who live in Evanston , Ill. , will be forever grateful to their pediatrician, Arthur Dechovitz, for the way he delivered that but. "When Chris was born, parents were being told to institutionalize their children. We never had that kind of experience," Sheila says. "The doctor said, 'Here's your baby. Who do you think he looks like? The most important thing is that you love him and you treat him like you would treat any other baby.'" Hebein, who has served as executive director of the National Association for Down Syndrome since 1979, says, "We never had negative input from the beginning, so I think that got us off to a good start."

Thirty-three years later, fewer women are surprised in the delivery room the way Sheila Hebein was. Screening for Down syndrome became a routine part of U.S. prenatal care around 1990. Typically, women are offered a "triple screen" blood test during the second trimester of pregnancy (see chart). The results are entered into a computer along with the mother's age, and the machine spits out her individual risk of carrying a child with Down. If the risk is high--say more than 1 in 300--she will be offered amniocentesis, a needle-in-the-belly test that allows doctors to conclusively diagnose genetic aberrations, including Down, but carries about a 1-in-300 risk of causing miscarriage. If an extra 21st chromosome is found--the hallmark of Down--the woman or couple face a fateful choice: to terminate a pregnancy that has already reached the second trimester, or prepare to raise a child with Down, which causes mild-to-moderate retardation and often other health problems as well. Doctors estimate that 80% to 90% choose the first path.

For years, doctors have hoped to offer women the opportunity to weigh their options earlier. Last week brought good news on that front. A $15 million study, six years in the making and funded by the National Institute of Child Health and Human Development, found that a method of screening women for Down in the first trimester is an even better indicator of risk than second-trimester screening. The aptly named FASTER study (for first- and second- trimester evaluation of risk), published in the New England Journal of Medicine, determined that if done properly, the first-trimester screening detects 87% of fetuses with Down at 11 weeks gestation, while the second-trimester blood screening detects 81% if four substances are screened and only 69% if the more popular triple-screen test is used. Most accurate of all--with a 96% detection rate--is a "fully integrated" calculation that combines both results.

The study will undoubtedly increase demand for the first-trimester test, though it costs $200 to $800 and is not covered by most insurance. More important, it greatly clarifies the range of options for expectant mothers, says lead author Dr. Fergal Malone, chairman of obstetrics and gynecology at the Royal College of Surgeons in Dublin , Ireland . "This is not a one-size-fits-all approach," he says. The first-trimester screening carries a high risk of false positives for older women, so a woman who has struggled for years to get pregnant and wishes to avoid the risks of a follow-up amnio might opt for the fully integrated test, even though that means waiting until the second trimester. For many others, speed is the priority. Dr. Malone hopes the study "will finally do away with the entirely arbitrary idea that women over 35 should be alarmed and have amniocentesis and women under 35 are not at risk." In fact, most babies with Down are born to women under 35, simply because so many more of them are giving birth.

Though doctors greeted the study as a breakthrough, the good news was tinged with irony for parents like the Hebeins. They have raised a child with Down syndrome in an era of opportunity for the disabled and have helped redefine what such children are capable of. Chris Hebein is a remarkable example. Having graduated from a special education school, he has worked full time for the past 12 years as a mail clerk at Rotary International in Evanston . Never late, never absent, Chris Hebein adores his work and takes pride in his ability to sort mail at top speed. "Am I fast or what?" he asks, while flipping envelopes into piles and occasionally jotting a note to keep track of mailing expenses. At home with his parents, he plays his own jazzy piano compositions.

What concerns many Down parents is that the new study will make it easier for women carrying a Down fetus to terminate the pregnancy in the first trimester, when abortions are less risky, both medically and psychologically, and that fewer will even consider having a child like Chris. "Will people open their eyes to the possibilities of these kinds of kids?" asks Patricia Bauer, a former editor at the Washington Post. Her daughter Margaret, 21, has Down, and is, according to her mother, an avid reader, Red Sox fan and downloader of Internet recipes as well as a "source of joy and delight to her family." Says Bauer, who makes a point of saying she is not a churchgoer: "Most of the people who make these decisions don't know an individual who has Down syndrome. They don't know about the advances in recent years."

At the best prenatal clinics, doctors and genetic counselors try to provide a full picture of the rewards and risks of raising a child with this disorder. They refer interested patients to support groups. About half of babies born with Down have heart defects, though thanks to improved treatment, their average expected lifespan has doubled, from 25 in 1983 to 56 today. A higher risk of leukemia, infectious disease and dementia are also in the picture.

"Prenatal counseling and diagnosis are not a search-and-destroy mission," insists Dr. Malone, who has seen many of his patients choose to continue a Down pregnancy. "Most of us would not answer the question, 'Doctor, do you think I should terminate?' It's not for us to decide."

The letter I sent into Time - didn't get published - huh, what a surprise:

The title to the article “The Down Dilemma - Is a life with the syndrome worth living?” is a punch to the stomach that is going to keep me emotionally doubled over for days. I am shocked that a national publication could print such an ignorant and hurtful statement.

My own life changed six years ago in more thought-provoking ways than I ever could have imagined when my youngest daughter, Rose, was born with Down syndrome. My perceptions of what is and isn’t possible have been torn down and redefined again and again as she has grown from a fragile newborn into a vivacious and curious student. Now on an exciting First Grade adventure, Rose is making her way. The birthday party invitations have come. The friendships are being made in our neighborhood, on her soccer and T-ball teams, at dance class and swim lessons. First words are being read and her first soccer goal had been scored. What she can do is not defined by predetermined low expectations and limited opportunities. Rose is not ‘mild’ or ‘high-functioning’; she is not an ‘exception’. She is a capable and successful individual because she has been given the opportunity to thrive and succeed in our family and our schools, in a community that welcomes, supports and encourages her, just as anyone would hope for any child. These opportunities and successes are not only possible but what should happen in a fair-minded world.

If I had known six -year-old Rose when we first learned of her diagnosis of Down syndrome, I would have been immensely relieved, the fears I carried with me then were so far from the truth. And now I can see both sides of this sad issue; in the memory of the prejudiced and uncaring person I used to be and as the informed person I am now with the benefit of my life with Rose. And I can say with certainty that a choice based on inaccurate information is the wrong choice, a choice based on fear is the wrong choice, a choice made because you can’t reconcile your our expectations with your own faulty misperceptions is the wrong choice. And I say with all my heart to choose a child because they’ve already started to live in your hopes and dreams is always the right choice.

First Day of First Grade
	The morning - the older kids look so glum - at least Rose and her cousins look happy ... ... getting on the bus with Jimmy and Tommy ... ... and getting off the bus at the end of the day and walking home with Aunt Liz, Jimmy, Tommy and Mom.
School Pictures
	Erin's a Senior Katie in 8th Grade Rose in 1st Grade
Inclusion Talking Points
	There was a question posted on CDCS members listserv requesting supporting information for the benefits of inclusion. This is a great question. I have sensed this need for this information as well. Although, my initial experiences have been very positive and the benefits seem obvious when viewed first hand there is a need to have a more rigorous justification ready for those occasions when you run into the interested but disagreeing person. I found this to be helpful. Everyone, I met with some of my high school friends this weekend and we were talking about what's going on in each other's lives. I was talking to them (they have no kids of their own yet) about my daughter starting pre-school and some of the issues that I'm running into getting her school to realize that I want her to be included into the classroom just like the other kids and that I don't want her pulled out for each therapy by herself to another part of the school. One of my friends asked why I wanted that, that wouldn't that be better to have her have that "personalized, individual instruction of a special education teacher" rather than have her try to learn in the same classroom as the other kids. I made my argument for inclusion with all the talking points that I know of and still I guess I didn't have enough to convince her why inclusion was better than either a segregated special education school or pulling her out of her regular classroom for "personalized instruction" 3 hours a day (once she gets older - she currently isn't being pulled out 3 hours a day in pre-school but I have a feeling this is the "norm" in our district once she's older). At the end of our conversation, she still didn't fully get how inclusion was better. She has a friend who teaches computers at a special needs school down in North Carolina who raves about how much better it is etc. etc. She compared having special needs schools to schools that specialize in things like the arts or music. That special education schools are just specialized schools that personalize the education for the needs of those attending. So if those schools are good, then why not special needs schools? So I have some questions for everyone: 1) Does anyone have info on published research that compares children that are in their say twenties that were fully included in their local district schools their whole lives to those children that spent their entire lives in segregated schools specifically for special education? 2) What are good talking points to use when discussing this topic with someone who doesn't know why inclusion is good. I want good talking points that talk about research done that shows the benefits of inclusive education versus just saying "it's good because our kids are treated like every other kid and they deserve the same education." What I'm picturing in my head is kind of a debate format - where I've got an answer for each point that someone can bring up "against inclusion" or "for segregated schools". Thanks, Karen A response from Beth Lurie: For your question #1, here is a long-term study from the UK that shows that students w/Down syndrome do better in mainstream schools. The summary states, " The study found no educational benefits of special school education. On all the measures the teenagers with Down syndrome educated in mainstream schools were either equal to or significantly ahead of their special school peers with Down syndrome. The teenagers in mainstream schools were more than two years ahead on spoken language measures and more than three years ahead on literacy measures." http://www.downsed.org/research/projects/reports/2000/education/ Also, here is a list of over 20 research papers that show either that kids with diabilities do better academically in inclusive settings; that kids without disabilities do better academically in inclusive settings; that kids with disabilities do better socially in inclusive settings; and/or that kids without disabilities do better socially in inclusive settings: http://www.spedlawyers.com/outcomes_research.htm For your #2, my talking points are the research results (above), plus the civil rights argument. I often compare the "separate" debate for students with disabilities to the "separate but equal" history that led to Brown v. Board of Education (1954): separate is inherently unequal. Here is the summary of Brown; substitute "typical" for "white" and "special" for "Negro": "Segregation of white and Negro children in the public schools of a State solely on the basis of race, pursuant to state laws permitting or requiring such segregation, denies to Negro children the equal protection of the laws guaranteed by the Fourteenth Amendment -- even though the physical facilities and other "tangible" factors of white and Negro schools may be equal... (c) Where a State has undertaken to provide an opportunity for an education in its public schools, such an opportunity is a right which must be made available to all on equal terms. (d) Segregation of children in public schools solely on the basis of race deprives children of the minority group of equal educational opportunities, even though the physical facilities and other "tangible" factors may be equal... " Finally, if we want to teach our children to live, learn, work, and love in the real world, then we'd better educate them in the real world! I could go on forever. Thanks for listening. My more blatant cut-and-paste response: Some more information from one of my favorite websites, Riverbend Down Syndrome Parent Support Group, at http://www.altonweb.com/cs/downsyndrome/index.htm. They cover many pertinent topics including inclusion. Here's an excerpt on the benefits of Inclusion: Several years ago, the basic premise of special education was that students with disabilities would benefit from a unique body of knowledge and from smaller classes staffed by specially trained teachers using special teaching materials. While the premise remains valid, there is no compelling evidence demonstrating that segregated special education programs have significant benefits for students. A number of studies over the years have reported the various benefits of inclusive education. In 1996, the National Down Syndrome Society published a research report on the inclusion of children with Down syndrome in general education classes¹. After analyzing and comparing extensive parent and teacher questionnaires, this study found that with proper support and adequate communication between parents, teachers and professionals, inclusion is a favorable educational placement for children with Down syndrome. The study also found that the learning characteristics of students with special needs were more similar to their nondisabled peers than they were different. Moreover, teachers reported positive experiences with students with Down syndrome. They described their students as eager to learn, especially when encouraged, and reported personal satisfaction in terms of their professional achievements. Literature documenting successful inclusion practices is significant and growing. An analysis by Baker, Wang and Walberg in 1994 concluded that "special-needs students educated in regular classes do better academically and socially than comparable students in non-inclusive settings²." Research by Hollowood et al. (1995) found inclusion was not detrimental to students without disabilities. In fact, a national study of inclusive education conducted in 1995 by the National Center on Educational Restructuring and Inclusion (NCERI) reported academic, behavioral and social benefits for students with and without disabilities⁴. The study also concluded that students within each of IDEA's 13 categories of disability, at all levels of severity, have been effectively integrated into general education classrooms. NCERI also reported positive outcomes and high levels of professional fulfillment for teachers. A number of other studies confirming the educational and social benefits of inclusion for students with and without disabilities can be found in the reference list at the end of this publication ^5,6,7. In May 2000, the Indiana Inclusion Study⁸ investigated the academic benefits of inclusive education for students without disabilities. This study concluded that students without disabilities who were educated in inclusive settings made significantly greater progress in math than their peers. Although their progress in reading was not significantly greater than their peers, there was a "consistent pattern" in their scores that favored educating students without disabilities in inclusive settings. This and other research has highlighted improved academic skills, social skills, communication skills and peer relationships as four of the most important benefits of inclusion. Nondisabled students can serve as positive speech and behavior role models for those with disabilities and students with disabilities offer their nondisabled peers acceptance, tolerance, patience and friendship. As allies and friends, peers can offer support both in and out of the classroom. These findings show that everyone involved in inclusive schooling can benefit from the experience. The introduction to the Individuals with Disabilities Education Act acknowledges that education in inclusive settings works when the mandates of the law are followed. It states: Over 20 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by: Having high expectations for such children and ensuring their access to the general education curriculum to the maximum extent possible; Strengthening the role of parents and ensuring that families of such children have meaningful opportunities to participate in the education of their children; Providing appropriate special education and related services, aides and supports in the regular classroom to such children, whenever possible; and Supporting high-quality intensive professional development for professionals who work with such children" [20 U.S.C. 1400(5)(C)]. Inclusive education has also been shown to have a positive impact on employment outcomes. A 1988 study by Affleck et al., spanning fifteen years, found that students with disabilities educated in inclusive settings had an employment rate of 73 percent while those in segregated programs had an employment rate of 53 percent⁹. Ferguson and Asch (1989) found that the more time students with disabilities spent in regular classes, the more they achieved as adults in employment and continuing education¹⁰. More recently, in its 1997 annual report to Congress, the U.S. Department of Education noted: "across a number of analyses of post-school results, the message was the same: those who spent more time in regular education experienced better results after high school¹¹." As nearly all employment settings are themselves inclusive, involving people with and without disabilities, it is easy to imagine why inclusive education has a positive impact on employment outcomes. Also, another great source of "Talking Points" is from "Creating an Inclusive School" by Richard Villa and Jacqueline S. Thousand. Chapter 7 on "Questions, Concerns, Beliefs and Practical Advice About Inclusive Education" includes a comprehensive list of frequently asked questions. I find this chapter and this book overall to be very helpful.
The Alleged "Down's Dilemma" November 2005
	This story in Time magazine also caught a lot of attention on our CDSC listserv. The article is tough enough to take but the title is rather shocking. The letter to the editor I sent in follows. I had to re-write it several times to try to get the tone down below a scream. I'm not sure if I quite got there or not. The Down Dilemma: Is a life with the syndrome worth living? A first-trimester test raises the question earlier than ever By CLAUDIA WALLIS Posted Monday, Nov. 14, 2005 Sheila and Peter Hebein learned that their first and only child had Down syndrome on the day he was born, in 1972. "I remember kind of stopping breathing," Sheila recalls. Prenatal testing was rare in those days, and because she was only 30, she was not a candidate. "One of the most challenging things about that day is that you're on a great high because you just had a baby," she says. "Then someone comes in and says, 'Yeah, you had a baby, but ... ,' and how they say that but is critical." The Hebeins, who live in Evanston , Ill. , will be forever grateful to their pediatrician, Arthur Dechovitz, for the way he delivered that but. "When Chris was born, parents were being told to institutionalize their children. We never had that kind of experience," Sheila says. "The doctor said, 'Here's your baby. Who do you think he looks like? The most important thing is that you love him and you treat him like you would treat any other baby.'" Hebein, who has served as executive director of the National Association for Down Syndrome since 1979, says, "We never had negative input from the beginning, so I think that got us off to a good start." Thirty-three years later, fewer women are surprised in the delivery room the way Sheila Hebein was. Screening for Down syndrome became a routine part of U.S. prenatal care around 1990. Typically, women are offered a "triple screen" blood test during the second trimester of pregnancy (see chart). The results are entered into a computer along with the mother's age, and the machine spits out her individual risk of carrying a child with Down. If the risk is high--say more than 1 in 300--she will be offered amniocentesis, a needle-in-the-belly test that allows doctors to conclusively diagnose genetic aberrations, including Down, but carries about a 1-in-300 risk of causing miscarriage. If an extra 21st chromosome is found--the hallmark of Down--the woman or couple face a fateful choice: to terminate a pregnancy that has already reached the second trimester, or prepare to raise a child with Down, which causes mild-to-moderate retardation and often other health problems as well. Doctors estimate that 80% to 90% choose the first path. For years, doctors have hoped to offer women the opportunity to weigh their options earlier. Last week brought good news on that front. A $15 million study, six years in the making and funded by the National Institute of Child Health and Human Development, found that a method of screening women for Down in the first trimester is an even better indicator of risk than second-trimester screening. The aptly named FASTER study (for first- and second- trimester evaluation of risk), published in the New England Journal of Medicine, determined that if done properly, the first-trimester screening detects 87% of fetuses with Down at 11 weeks gestation, while the second-trimester blood screening detects 81% if four substances are screened and only 69% if the more popular triple-screen test is used. Most accurate of all--with a 96% detection rate--is a "fully integrated" calculation that combines both results. The study will undoubtedly increase demand for the first-trimester test, though it costs $200 to $800 and is not covered by most insurance. More important, it greatly clarifies the range of options for expectant mothers, says lead author Dr. Fergal Malone, chairman of obstetrics and gynecology at the Royal College of Surgeons in Dublin , Ireland . "This is not a one-size-fits-all approach," he says. The first-trimester screening carries a high risk of false positives for older women, so a woman who has struggled for years to get pregnant and wishes to avoid the risks of a follow-up amnio might opt for the fully integrated test, even though that means waiting until the second trimester. For many others, speed is the priority. Dr. Malone hopes the study "will finally do away with the entirely arbitrary idea that women over 35 should be alarmed and have amniocentesis and women under 35 are not at risk." In fact, most babies with Down are born to women under 35, simply because so many more of them are giving birth. Though doctors greeted the study as a breakthrough, the good news was tinged with irony for parents like the Hebeins. They have raised a child with Down syndrome in an era of opportunity for the disabled and have helped redefine what such children are capable of. Chris Hebein is a remarkable example. Having graduated from a special education school, he has worked full time for the past 12 years as a mail clerk at Rotary International in Evanston . Never late, never absent, Chris Hebein adores his work and takes pride in his ability to sort mail at top speed. "Am I fast or what?" he asks, while flipping envelopes into piles and occasionally jotting a note to keep track of mailing expenses. At home with his parents, he plays his own jazzy piano compositions. What concerns many Down parents is that the new study will make it easier for women carrying a Down fetus to terminate the pregnancy in the first trimester, when abortions are less risky, both medically and psychologically, and that fewer will even consider having a child like Chris. "Will people open their eyes to the possibilities of these kinds of kids?" asks Patricia Bauer, a former editor at the Washington Post. Her daughter Margaret, 21, has Down, and is, according to her mother, an avid reader, Red Sox fan and downloader of Internet recipes as well as a "source of joy and delight to her family." Says Bauer, who makes a point of saying she is not a churchgoer: "Most of the people who make these decisions don't know an individual who has Down syndrome. They don't know about the advances in recent years." At the best prenatal clinics, doctors and genetic counselors try to provide a full picture of the rewards and risks of raising a child with this disorder. They refer interested patients to support groups. About half of babies born with Down have heart defects, though thanks to improved treatment, their average expected lifespan has doubled, from 25 in 1983 to 56 today. A higher risk of leukemia, infectious disease and dementia are also in the picture. "Prenatal counseling and diagnosis are not a search-and-destroy mission," insists Dr. Malone, who has seen many of his patients choose to continue a Down pregnancy. "Most of us would not answer the question, 'Doctor, do you think I should terminate?' It's not for us to decide." *The letter I sent into Time - didn't get published - huh, what a surprise:* The title to the article “The Down Dilemma - Is a life with the syndrome worth living?” is a punch to the stomach that is going to keep me emotionally doubled over for days. I am shocked that a national publication could print such an ignorant and hurtful statement. My own life changed six years ago in more thought-provoking ways than I ever could have imagined when my youngest daughter, Rose, was born with Down syndrome. My perceptions of what is and isn’t possible have been torn down and redefined again and again as she has grown from a fragile newborn into a vivacious and curious student. Now on an exciting First Grade adventure, Rose is making her way. The birthday party invitations have come. The friendships are being made in our neighborhood, on her soccer and T-ball teams, at dance class and swim lessons. First words are being read and her first soccer goal had been scored. What she can do is not defined by predetermined low expectations and limited opportunities. Rose is not ‘mild’ or ‘high-functioning’; she is not an ‘exception’. She is a capable and successful individual because she has been given the opportunity to thrive and succeed in our family and our schools, in a community that welcomes, supports and encourages her, just as anyone would hope for any child. These opportunities and successes are not only possible but what should happen in a fair-minded world. If I had known six -year-old Rose when we first learned of her diagnosis of Down syndrome, I would have been immensely relieved, the fears I carried with me then were so far from the truth. And now I can see both sides of this sad issue; in the memory of the prejudiced and uncaring person I used to be and as the informed person I am now with the benefit of my life with Rose. And I can say with certainty that a choice based on inaccurate information is the wrong choice, a choice based on fear is the wrong choice, a choice made because you can’t reconcile your our expectations with your own faulty misperceptions is the wrong choice. And I say with all my heart to choose a child because they’ve already started to live in your hopes and dreams is always the right choice.
Letter to the editor on Ability Grouping and Retention in Grade November 13, 2005
	A member of our local Board of Education had published a lengthy letter in our local paper defending the practice of ability grouping, the need to only promote a student to the next grade if they have demonstrated some academic level of performance and then a very difficult to follow attack on Differentiated Instruction. This is my response which was thankfully published. … While Mr Panos’s attempt to communicate his education goals for Windsor is admirable what he is actually promoting sends a chill through my heart. I sincerely question whether he values the success of all of Windsor ’s students or whether he is just looking to clear the struggling students out of the way of the top-tracked students. To first address his claims on ability tracking, although most schools that have a large enough student population are organized by ability tracks, there is no evidence to support that this is the most effective way to teach all students. In fact there is much evidence to support the concern that tracking only aids students placed in the upper track and is especially harmful to the students in the lower tracks. (Reference: www.ncrel.org, www.sharingsuccess.org, www.widener.edu, and more) As further supported by the National Association of School Psychologists position on tracking; “ …the (NASP) supports the instruction of students within heterogeneous classrooms that recognize and accommodate individual student differences in learning style, ability, and interests. NASP opposes the use of tracking, a permanent approach where students are assessed and placed into specific classrooms with peers of similar ability, because of its demonstrated negative effect for many students.“ (Reference: www.nasponline.org) Specific concerns are that while upper tracked students may benefit students in the lower tracks are not challenged by the curriculum, by the teaching methods and by lower expectations. Of special concern for Windsor is the consistent findings that there is a racial bias as well; students in the upper track are predominantly white, students in the lower tracks are predominantly black and Hispanic. I could site more study references to support this but sadly we need to look no further than our own High School’s NEASC Report of Visiting Committee Findings October 5-8, 2003 (The full report is available from the WHS library). Concerning the lack of challenging course content the NEASC report says, “the manner in which curriculum is being delivered does not give all students the opportunity to practice and to achieve the school’s expectations for learning. Moreover, there is a greater disparity in lower level courses. Requirement for academic success in these classes does not challenge students to perform at high levels. Consequently, a segment of the student population is limited in its ability to achieve and practice the academic expectations for student learning.” Regarding teaching methods the NEASC report says, “The involvement of all students in activities that promote personalized instruction, authentic application, and higher order thinking skills is often limited to those students in high honors (AP, Seminar) honors and some standard courses. In many instances, higher order thinking skills are absent in standard (S) and basic (B) levels. Hence, instruction for these students is not offered in a challenging and engaging atmosphere. This has a negative impact on student learning.” Concerning the lower expectations the NEASC report says,” Overall, the content of the curriculum is not rigorous at all levels. Many courses exist that are traditional in structure and approach and employ paper-and-pencil assessment of knowledge and skills. …. Moreover, only small numbers of students are encourages to enroll in upper level classes … The evidence of daily or challenging homework assignments was absent in many classes. Therefore, the result is a fairly relaxed and unhurried, but not a particularly stimulating academic atmosphere.” And concerning the racial bias in the WHS tracks the NEASC report says, ““Student grouping patterns do not adequately reflect the student body and foster only limited heterogeneity. … A disproportionate number of students of color are currently placed in the lower level classes .. As a result, not all students are being accommodated or challenged to their full potential.” Contrasted against the findings of limited course content and lower expectations this should be a major concern but especially here in Windsor , our unique jewel of a diverse town. I would encourage Mr Panos to build on our diversity and not to encourage propagating a racial bias in our classrooms. Work towards the day where every classroom in Windsor looks like Windsor . And, again as supported by National Association of School Psychologists, their position on “Student Grade Retention and Social Promotion” states the following, “… Through many years of research, the practice of retaining children in grade has been shown to be ineffective in meeting the needs of children who are academically delayed. … Given the frequent use of this ineffective practice, NASP therefore urges schools and parents to seek alternatives to retention that are more beneficial to children and address more effectively the specific instructional needs of academic underachievers.” Florida has played with the “Social Promotion issue” as a political football at the state level and is suffering the consequences on a grand scale. The report “Retaining Students in Grade: Consequences for Florida by Mary Lee Smith Arizona State University reports, “Retaining students in grade and using proficiency standards to determine students’ progress through grades was intended to make schools accountable and increase academic achievement. Research evidence demonstrates that grade retention does not, in fact, improve achievement. Further, a student who has been retained stands a much greater chance of dropping out of school instead of persisting to graduation. Retaining students in grade is both expensive and ineffective, and there are effective alternatives to it. Abandoning this policy in favor of more productive and proven policies will save money and enhance the education and life chances of Florida ’s students.” Or more specifically, “…one or two years later, the group that had been eligible to be retained but was instead promoted had a better level of average achievement than the peer group which had been retained.” Students that were ‘socially promoted’ or kept with their age-group peers consistently do better academically than students that are held back. And further; ”Fifty-four of the 63 studies favored the promoted group. Such a one-sided division of studies is rarely observed in education research.” In other words, few conclusions are this decisively support by overwhelming data. More frightening is the impact on the drop out rate. “…retention increases the risk that a student will drop out by 20 to 50 percent. Retention is the single largest predictor of dropping out, across all categories of ethnicity, gender, and poverty.” And a student that is retained two years in a school career has an 80% to 90% chance of dropping out. To summarize “ending Social Promotion” is not the most effective way to educate students, keeping students with their age-group peers is. Ending social promotion is not cost effective; the town will bear the cost of the repeated year. And, no surprise, it’s not equitable, with a disproportionate number of students of color retained in grade. The major concerns regarding ability tracking and ‘Social Promotion’ are prevalent through out nation’s schools and our schools here in Windsor . There’s no shame in an honest assessment of the problem and taking the most effective, fact based steps to make amends. Windsor High School has started to make positive steps to address the NEASC report findings. The efforts of Dr Feser, Mr Arcarese and their staff are to be applauded. I encourage their progressive efforts to reduce tracking at the High School. I look forward to having my children continue to attend Windsor schools during this time of positive change. And I won’t even get started on Mr. Panos’s misrepresentation of Differentiated Instruction. Clearly he doesn’t get it. He never did and I fear he never will. I would kindly suggest that Mr. Panos pull his head out of his ideological vacuum and take a clear look around at the facts and data available today; read, ask questions, discuss, learn and propose changes that truly benefit all students. But please do not push a political agenda that is proven to hurt the well being and success of Windsor’s students. Chris McAuliffe
One Size Fits All?
	Below is me response to a note posted on our local list_serv claiming that the push for Inclusion was actually denying people a range of educational choices. I'm not sure what you mean by one size fits all due to PJ settlement. I agree with Anne's point that before the PJ settlement educational opportunities for students with Intellectual Disabilities were greatly limited. Although Special Education was touted as a continuum of services the reality is that there were only rare opportunities for educational in the regular classroom. For most folks the continuum of services started and finished in a self-contained classrooms and the students had few options to choose from. Not that some folks like you and your son weren't fortunate enough to get just the right level of education you were seeking and found to be successful for your family. However most people were shut out of a full range of educational opportunities. If the choices are limited then the results are going to be just as limited. What I am advocating for when I support the PJ settlement is that the schools make a sincere best effort to offer the best educational practices for all students. Piles of research supports that the best place for students with and without disabilities to learn is all in the same regular ed classroom. This is done successfully if the needs of every student is properly addressed through a means like an IEP developed by the student's PPT. IDEA asks that the regular ed classroom be the first choice for education of any students, not the only choice, not the last choice, the first choice. That choice is the law but its not the reality in most towns. I feel if we don't strongly advocate for inclusion in regular classrooms this choice simply won't exist for the vast majority of students, just like in the days before PJ. And I agree with you, the choice for what is right for the students needs to be made by the PPT. Obviously, I am not in the middle of anyone else's PPT demanding that they change the IEP to satisfy my ideals. As I have found even with my two daughters with only 46 chromosomes as well as my youngest daughter with Down syndrome, educational choices, as are all parental choices, are extremely personally. While they may not be perfect, they are own choices to make and live with. That's the thrill of parenting. However, outside of an PPT, if someone should broach the topic with me I would gladly discuss and defend inclusion to the best of my abilities. These debates, while not always satisfying, are how we all learn. The reality is that we live in a time of great change in Connecticut. The PJ settlement has opened doors to the regular ed classroom for many children like my youngest daughter. I'm very grateful to live in Windsor, a town that has been making sincere efforts to offer successful education in a regular ed classroom. So far, she's been fully included in Kindergarten as well as 1st grade without a one-on-one para- our choice obviously - and she's doing great. Starting to write, starting to read, making friends and playing soccer and T-ball after school. Now while Rose is 100% included - again our choice - we've had many opportunities to have her pulled out of class, either for speech, PT or OT as well as for one-on-one time with the SPED teacher. All these options have been discussed at our PPT meetings - there always the first options raised by the various school folks when they feel a little frustrated or limited by the regular classroom. We've resisted these suggestions - our choice - and instead challenged them to find a way to adapt to the regular classroom setting. First, I know that they are only in their second year of doing this high amount of inclusion so they are still learning and, second, I personally fear that we don't understand all the negatives associated with pulling students out of class. Now these choices, while at times they feel difficult have really been relatively easy to make. I am fortunate to live in a town where the superintendent, the SPED director, the school principal, the classroom and the SPED teacher are all very positive about my daughter and students like her have a highly inclusive educational experience. And yet, even here it would be fairly easy for my wife and I to have her less included if we gave in to the requests for pullouts. Again our choice to keep her fully included but at least we have that choice in a school system that's working hard to make it successful. I don't think a lot of other people in other towns have that choice. That's the problem. If you school doesn't make a sincere attempt at providing a successful inclusive educational experience in a regular classroom then you don't have any choice. Even though tons of data supports that this is the best way to educate all students you'll never see it if most towns aren't forced to do it by law. If its there, you can always so no-thanks and get pulled out but if its not there you;ve got no choice. You can't get pulled out if you never had a chance of being in. So, Joe and Nancy, please try to consider the difference between what worked for you in the era that your son went to school and the choices that folks like me would like to see available for all families today. I do feel that if done well, the vast majority of students will choose and benefit from an inclusive setting but I would never expect the day when every single student is fully included 100% of the time. It just won't happen. It's too hard to fight the human tendency to segregate. I do know that the time is now to work with the PJ settlement to make sure as many schools as possible bring inclusion to their classrooms as the first choice for educating students. The first choice, and I feel the best choice, but certainly not the only choice. Thanks, Chris McAuliffe
Alzheimer's and Assisted Living
	Another response to an note posted on our local list_serv concerning two issues. The first is was a mother's very sad story about dealing with her adult son with Down syndromes life with Alzheimer's. One point she stressed, which I felt she was mistaken, was that she was disappointed that no medical person had warned her that because her son had Down syndrome he was definitely going to get Alzheimer's. The second somewhat related issue is the living options of adults with Intellectual Disabilities. Thankfully much progress has been made over the last several decades. Many, if not most adults with ID are either living with families or in assisted-living home settings. There is still a strong need for more assisted living homes. Here in Connecticut that issue is know as "The Waiting List". The days of assigning people to live out their lives in institutions is past. However many still remain institutionalized, never having made it to an assisted living home type setting. In Connecticut the Southbury Training School still has over 500 adults with Intellectual Disabilities living their lives out in an institution. Many, including myself find this to be a very sad state of affairs. ForConn is a local group that supports Southbury as a viable option. Here's my letter.. This is a excellent conversation. We are fortunate to have this forum available to us. And it gives me an opportunity to weigh in and share my ideas as well. Its hard for me to keep up with the rapid exchange but I'll try to catch up. First, going back to "A mother's concerns about her son", yes, a very difficult story to read. I'm sure the mom and her son and family have struggled through some heart wrenching and drawn out struggles. However, the judgment presented as fact that Down syndrome equals Alzheimer's is just wrong. There is so much we don't even begin to understand about either Down syndrome or Alzheimer's that it seems the only clear mistake we can make is to assume that we understand something beyond any doubt. Do we need to look any further than what was assumed to be fact just a generation or two ago? Compare the wide spread accomplishments of so many children with Down syndrome today to the limited expectations of yesterday. I would suggest that anybody interested in Alzheimer's in particular read "Aging With Grace : What the Nun Study Teaches Us About Leading Longer, Healthier, and More Meaningful Lives" by David Snowdon. This is a summary of an epidemiological study and, believe it or not, a very positive and well written story about Alzheimer's. I'll give you what I took away from the book; although a person may have the physical evidence of Alzheimer's within their brain that doesn't mean they have any of the symptoms. Whether or not you are going to develop any symptoms is dependent on how low stress and intellectually stimulating your life is. The lower stress you life, as in low blood pressure and stroke-free, the less likely your are to develop Alzheimer symptoms. And the more intellectually curious and engaged you are the less likely you are to develop symptoms. Think about that and let me offer this theory; does Down syndrome cause Alzheimer's disease or does how we treat people with Down syndrome cause Alzheimer's ? I wonder. Has any group of people been more alienated from society? from families? from schools? from our communities? How stressful is that? Has any group of people been more discouraging from being life long learners? The world is changing in very positive ways. Rose, my daughter with Down syndrome is only 6 years old, and the time for Alzheimer's is still a long ways off so what do I do? Do I assume that there's nothing I can do? That the future is a predestined certainty? Or do I assume that by treating my daughter with the common decency we should want and expect for all people she will realize benefits beyond my imagination? I pick the positive approach with a little help from whatever amazing medical advances are sure to be made in the next 10 or 20 or 30 years. Secondly, concerning ForConn . I have visited the website and I am disturbed by the positions held. I understand that ForConn promotes the acceptance of a full range of life settings; from family life, to assisted living and to institutions like the Southbury Training School . While I can, with some strain, accept that all may be necessary in the imperfect world that we live in today, I can not believe that they are all equally acceptable. Living as part of an energetic, diverse community is always preferred whether you are graduating from High School or coming out years spent in an institution. I can understand that due to the reality of The Waiting List and the lack of assisted living settings, older folks placed decades ago at Soutbury and now without families need somewhere to live. A segregated setting is obviously a lot better than being homeless but this is no where near a preferred choice. I feel a segregated setting is to be used as a last resort, only when all else has failed. And I would hope that with hopefully some day there will be sufficient assisted living opprotunities for everyone and the doors to Southbury Traning School could be closed forever. From the ForConn website: "Other groups may oppose specialized educational and residential opportunities in favor of full mainstreaming, closed admissions and elimination of the ICF/MR option. FORConn opposes these initiatives because they limit legitimate choice and dismantle programs that are specially designed to assist individuals with severe mental retardation, medical complexities, and extreme behavioral challenges. ... FORConn wants to preserve the full continuum of educational and residential placement options." I feel strongly that this is wrong. ForConn is promoting, as clearly stated in their own words, "specialized residential opprotunities" as an option to be defended and preserved against "other groups". Is the other group people that support a positive resolution of The Waiting List? Would ForConn resist closing Southbury if there were appropriated assisted residential settings available for every Southbury resident? Honestly, I searched the entire ForConn website and found no mention of the Waiting List or where ForConn stands on that issue. From the DMR website: "The Southbury Training School (STS) was built in the 1930's as a home for individuals with Mental Retardation. Over 60% of the approximately 594 residents have lived here for over 30 years. The average age of the current resident population is 53 years old and a majority of them have chosen to continue living at STS. With this aging population, Southbury Training School is slowly becoming a home for seniors....Admissions to Southbury Training School closed in 1986 when 1,111 individuals lived there. Connecticut Public Act No. 95-236 requires the commissioner of DMR to continue operations of Southbury Training School . " This is obviously not a full continuum of services. I fear this is just a carryover from the dark days. So please clear up this issue for me. Where does ForConn stand on The Waiting List issue? Would ForConn be in favor of closing Southbury if an appropriate assisted living setting was found for every resident?
Christmas Family Pictures December 2005
	Six years goes by pretty fast ...