July 2006 Issue
If anyone is interested in attending a Riverbend Down Syndrome community group meeting, please call Tamara Rampold. We would like to schedule a meeting if there is an interest in attending one. Let Tamara know what evenings of the week are best for you. We have some new families in southern Illinois so it might be a good idea for us to get together and get to know one another. We are looking at a fall meeting around September.
Reprinted is Why Do We Need Research in Down Syndrome? by Anne Simpson, which is a commentary in reply to: Why Do We Need More Support for Research in Down Syndrome? by Alberto Costa, in the February 2006 issue of Moonlight.
Local EventsJuly 24. Shop 'n Save/Special Olympics (Illinois Southwestern Area 12) Night at the Gateway Grizzlies. Game Time: 7:05 p.m. Tickets: $10. 100% of the proceeds go to local Special Olympics Athletes. Tickets available from Jerry Minchey, (618) 656-0387, email@example.com.
Sunday, September 3: 6th Annual Down Syndrome Association of Greater Saint Louis 2006 Walk In The Park (Buddy Walk) with the St. Louis Cardinals at the new Busch stadium. Sponsor and Buddy Campaign registration deadline is August 1st and few tickets are remaining.
For more information or to register by phone please call Tim Nienhaus at (618) 799-8515. To register by e-mail send to: firstname.lastname@example.org. To register by mail: Puttin For Down Syndrome, 221 Southwind Dr., Belleville, IL 62221
Future PlanningTicket to Work? Say What? Say What? Future Planning in Plain English, Vol. 2, No. 4, April 15, 2005 by Alexandra Conroy, Future Planning for Families with Special Needs. Waddell & Reed, Inc., One Oak Hill Center, Westmont, IL 60559. (630) 789-0044. Fax: (630) 789-8005.
This publication is for information only. Before making any financial decisions, please consult your benefits specialist, financial advisor or attorney.
What is the Ticket and how does it work?Ticket to Work is an underutilized but potentially useful Social Security Administration program designed to assist people with disabilities who want to work. It allows Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid and Medicare recipients to prepare for and begin to work without losing those benefits. One reason this is possible is because you can deduct certain expenses before calculating your 'countable income.' Remember that your eligibility for ongoing disability income benefits depends in part on whether your countable income exceeds the 2005 Sustained Gainful Activity (SGA) threshold of $830/month or $1,380/month if you are blind. Last issue, we discussed Impairment-Related Work Expenses (IWRE) which can be deductive to lower your countable income. In this issue, we will discuss unsuccessful work attempts, the trial work period, and extended eligibility. The first provision pertains to both SSI and SSDI recipients and the last two to SSDI only.
When you make an effort to work at level that meets or exceeds SGA as defined above but find that due to either
You must stop or reduce your employment level after a short time (less than six months), your effort is considered an unsuccessful work attempt. Even if you did earn more than SGA during your unsuccessful work attempt, your earnings are not considered by the SSA when you first apply for SSI or SSDI. Therefore, earnings from an unsuccessful work attempt, even if they exceed SGA, will not keep you from qualifying for SSI or SSDI. Similarly earnings during an unsuccessful work attempt do not count against you when the SSA makes an SGA decision to determine if your SSDI qualifying disability continues.
During the extended period of eligibility (discussed below) the SSA DOES consider earnings from unsuccessful work attempts when making an SGA decision. During the trial work period (discussed below) the SSA DOES NOT consider unsuccessful work attempts because no SGA decision is involved.
If you receive SSDI, a trial work period allows you to test your ability to self support for at least nine months. Regardless of your earnings during the TWP, you continue to receive your full SSDI benefits. The TWP continues until you have performed what the SSA terms 'services' for nine months—not necessarily consecutively—over a 60-month period. 'Services' are performed in any month when you either 1) work more than 80 hours or 2) earn more than $590/month. Please note that the earnings—related definition of 'services' IS NOT the same as the definition of SGA. Only after you have performed services for nine months out of a 60-month period, will the SSA consider whether you are capable of working at the SGA level. Unsuccessful work attempts (described above) are not relevant during the TWP because no SGA decision has yet been made. Your benefits may be stopped during a TWP if medical evidence demonstrates a recovery from your impairment.
If your disability payments have been stopped because you worked at a level considered at or above SGA, your benefits can be restarted automatically without any new application or proof of disability at any time when
When your disability payments are stopped, you are still paid for a 3 month grace period. Your benefits can be automatically restarted at any time between the end of the grace period and the 37th consecutive month after the end of your trial work period (see above). If your are eligible for benefits at the 37th month, you will continue to receive your SSDI until you
If your benefits end because you work at or above SGA but you stop or decrease work within 5 years, the SSA may agree to restart your benefits again.*Eligibility requirements taken from the Social Security Administration Programs Operation Manual System website (http://policy.ssa.gov/poms.nsf/aboutpoms) and the Centers for Medicare and Medicaid Services website (http://www.cms.hhs.gov/home/medicaid.asp). Information on Ticket to Work taken from the Social Security Administration 2003 'Red Book' (SSA Pub. No. 64-030)
For the past three years, MHDSA has had our office at the Eleanor Roosevelt Institute, a leading genetics research institute headed by Dr. David Patterson. In my role as volunteer coordinator and office assistant, I spend much of my time at ERI, and I bring my eleven-year-old son Tommy with me on occasion. We both feel right at home with all the terrific folks who work at ERI, and I've really enjoyed talking with the scientists about their research. Every one of the scientists is passionate about what they are studying, and the potential ramifications it will have on people with Down syndrome, diabetes, Alzheimer's disease, or Lou Gehrig's disease. And I have come to share that passion, and in my opinion, the future quality of life for our family members with Down syndrome will be determined by the research that is being conducted today.
More than forty parents attended the recent presentation by Dr. Alberto Costa, who came to ERI some eighteen months ago. I was astounded to hear that research in Down syndrome is funded at an extremely low level comparative to other disabilities. The majority of research funds are raised by national foundations interested in a single disability. To illustrate his point:
Dr. Costa's talk sparked quite a bit of discussion concerning this funding discrepancy, which also occurs at the federal level. One reason is that in the past, most research has focused on methods to identify Down syndrome during pregnancy, with the idea of terminating the pregnancy. Understandably, most parents of children with Down syndrome find this offensive, and have not therefore supported research. Secondly, most of our energy as parents has gone into early intervention and working towards the inclusion of our children in the community. Just a generation ago, children with Down syndrome were routinely institutionalized and denied a full life. Today, our children are accepted as members of our community.
However, this acceptance has led to complacency on the part of parents. Dr. Costa compares the general outlook on Down syndrome today with that of mental illness in the 1950s. "Fifty years ago, parents and family members were told to accept mental illness in their children as unchangeable and untreatable, a fact of life. However, later medical research identified numerous drug and behavior therapies that dramatically decreased the unwelcome manifestations of mental illness and greatly increased the quality of life for these individuals. What if there are similar drug, nutritional, or physical therapies that might make a similar gain for our children with Down syndrome? Without basic research to identify the deficits associated with Down syndrome, and further research to test drug or physical interventions to ameliorate these deficits, we will never know."
Dr. Costa began his career as a physician and later became a neuroscientist; he became interested in research in Down syndrome when his six-year-old daughter Tyche was born with Down syndrome. Today, Dr. Costa is the only researcher in Down syndrome who has been awarded a major grant from the prestigious National Institutes of Health exclusively to study potential drug therapies. The majority of the limited funding in Down syndrome is dedicated to the study of individual genes on chromosome 21, which will not directly affect the quality of life for our family members with Down syndrome in the near future.
During his talk, Dr. Costa used what he called a "simple model" to encourage parents and the research community to visualize the impact on our family members with Down syndrome if a drug or other therapy could raise the average IQ of the population of individuals with Down syndrome by twenty points. This is not an unattainable goal, given that there has been an average gain of 20 IQ points since individuals with DS have been living at home and benefiting from educational and early intervention opportunities. Today, the average IQ for a person with DS is 50; assuming a standard deviation of 10 points, this translates into:
If a drug or other therapy was discovered that could raise IQ points by 20, this is what it would mean to our family members:
Let's dream big! What can we as parents do, to make this come true? There is no master plan for basic medical research; what works is to provide the funding to study a problem, and let the scientists search for answers. Today, Down syndrome attracts little interest among research scientists due to the low level of funding. If the funds are available, scientists will flock to the field, and unlock the mysteries of Down syndrome, and more importantly, how we can improve the quality of life for people with Down syndrome today and in the future. As parents, we need to support research by advocating for funding and sharing our own resources. Let's raise the awareness of Down syndrome in the medical research community . . . we've seen what the supporters of muscular dystrophy, autism, diabetes, and other medical disorders have accomplished, and we need to make this happen!The Teen Scene Observations on Adolescence by Maureen Bursey. E-mail: email@example.com. Originally published in the "The Lighter Side" department of Abilities, Issue 44, p. 72, Fall 2000. Reprinted with the permission of the author.
Living with a child with Down syndrome has been compared to riding on a roller coaster. In our family, the early teen years for our child have been more like the Coney Island Special. However, I think it's more about adolescence than Down syndrome. The teenage years can be tough sometimes, and when they are, they're tough on everyone.
Our daughter reached adolescence at the age of eleven, after a turbulent year of emotional highs and lows. Although I'd had lots of child-rearing practice, our sons were hoop-shooting, water-squirting, worm-farm-type fellows. Their mood swings could be more aptly called "food" swings and, as long as there was cereal, happiness prevailed.
In no way did this prepare us for our daughter's early entry into adolescence. Neither my husband nor myself was psychologically ready for the change. After all, she is our baby; she is petite, blonde, and feminine; and she is quite dependent on us. We were taken unawares when she started talking about having a baby, about boyfriends, and about getting married. I nearly choked on my tongue the first time she asked me if I would come into the delivery room with her.
Thankfully, she had already been prepared for the physical changes of adolescence. It took us a while to discover how to help her with those mood swings. She was a bit worried about it, too. "It's okay, Mom," she said at one point. "It's just that I feel this way inside that makes me act this way outside. It's just a face [phase]."
In our daughter's case, we decided to check things out with her pediatrician, who discovered two medical situations that were creating a rougher-than-usual transition. One was her thyroid gland, which now tested as borderline underactive. The other was an estrogen imbalance. While these conditions are not completely "fixed," medication has helped the estrogen imbalance and we monitor thyroxin levels every six months.
Other issues became more apparent once the medical concerns were taken care of. Like identity issues. Like the fact that Erinn has Down syndrome. Her disability was something she needed to come to grips with. She didn't enjoy being around other children who had disabilities and didn't particularly like being different herself. One day, she casually remarked to her older brother, "You know, I'm not the only one around here with special needs." She insisted that she was going be his special needs worker when she grew up and, despite Matthew's attempts to explain, she was not going to be deterred by the facts.
At least she's setting goals on those days. She has tried another tack, where she asks me to fetch her something. When I tell her to get it for herself, she is indignant. "You HAVE to get it for me. I have Down syndrome, y'know." Self-respect is not easily gained by anyone, especially a young teen with a disability, but it's important work.
As previously mentioned, sexuality has been an ongoing issue these last few years as well. Because we have a good relationship, she confides in me about her latest crush, the changes in her body, the boy she hopes to marry. Her dreams are no different from my adolescent dreams. However, we have been more specific than my parents ever were. We have set very clear limits about what is and is not acceptable. When people ask her if she likes babies, she will often repeat word-for-word what we have told her. "Yes, but my mom says I can't have a baby until I'm 24 and not until I'm married." A conversation stopper par excellence.
Despite the feeling that our daughter falls somewhere between two and ninety-one on the age spectrum, most of the time she is thirteen. She adores the Spice Girls, especially Sporty. She gets a little dreamy when she listens to the Backstreet Boys too loud. She likes name-brand running shoes and baggy sweaters. Her speech is currently peppered with "whatevers" and "so's," which have taken root like horseradish. (Seinfeld's mother must have torn her hair out.)
This job of parenting has always been quite a ride. We try to set limits with consequences, we have (hopefully) reasonable expectations, and we have plenty of setbacks. With luck and planning, the next six or seven years will be busy and productive ones. Her energy is channeled into sports (basketball and soccer) and music (with Noreen, her favourite music therapist) and hopefully that will offset some of life's other tougher stuff.
It's with mixed feelings that we approach her entry in high school in the fall, but one thing we know for sure: A roller coaster ride doesn't last forever; we want to enjoy it while it lasts.(Maureen Bursey is a freelance writer living in Oakville, Ontario.) Maths is For Everyone – Count Us In! What is this thing called numeracy? By Rhonda Faragher. Reprinted from DSAQ Digest, December, 2000. (Newsletter of the Down Syndrome Association of Queensland).
Numeracy and mathematics are often talked about as though they are the same thing or that numeracy is the basic "stuff" leading to the hard "stuff" – mathematics. Actually, they are quite different. Numeracy is difficult to define but we can think of it as the mathematics that we need in all facets of our lives – work, recreation, civic duties and so on – as well as our ability to choose appropriate mathematics and the appropriate methods to meet our requirements. Because we all lead different lives, we all have different requirements for numeracy. We can also be more or less numerate in different situations. A bank officer may be very competent in calculating foreign exchange values but be totally at sea in calculating how much concrete to order for a driveway. Numeracy also changes over time. A few decades ago, it was necessary for most people to be able to do arithmetic quickly and without error using the standard written methods taught in schools. With the arrival of calculators and computers, the importance of the written arithmetic skills have diminished while the need for other skills – such as the ability to interpret graphs – has increased. One thing we can be clear about is that numeracy is NOT school mathematics. Many of the methods adults use to solve mathematical problems they encounter each day were not the ones they were taught in school. This is often because most people are very good at developing their own methods for solving problems they encounter. Many of the topics of school mathematics are included because they lead to further study of mathematics – a rich, beautiful subject in its own right! So, in order for a person to become numerate, they will need to develop strategies that often can't be taught in school. There will also be topics covered in school which are not necessary for numeracy but are prerequisites for studies in higher level mathematics. Therefore, numeracy is not school mathematics; is not the same for everyone; and can be learned in school but more is learned outside mathematics classrooms.
In helping people with Down syndrome develop the skills they need to become numerate, there are a few important facts to note. Firstly, people with Down syndrome can, and do, learn mathematics. Even very old research studies such as one undertaken by Cruikshank in 1948 demonstrated the ability of people with Down syndrome to learn mathematics strategies. The second point to remember is that people with Down syndrome are life-long learners. Even though parents can feel anxious that they may have "missed the boat" or that at the least it is slipping away, it helps to be reassured that although learning will be slower, it will happen. Sometimes rapid progress will be made at an older age when a skill suddenly has meaning and there is necessity for the person to learn it.
An important aspect of numeracy (but not the sole component) is the development of a sense of number. Counting plays an important role in the development of beginning number concepts, and yet, it is surprisingly complex. Entire books have been written about how children learn to become proficient at counting! Counting involves oral or rote counting in which the child learns the order of the words, often before they know what they mean. "Sesame Street", the enduringly popular children's program, provides an excellent opportunity for children to learn rote counting. Frequent repetition of the words in order, counting past ten and including music and visual interest all encourage the development of counting. These ideas could be copied by parents, if they wished. Counting can become part of daily activity. Stairs can be counted, apples can be counted into supermarket bags and plates can be counted at the dinner table. These activities can then be used to extend a child's understanding of counting past the rote chanting of the words.
Counting involves some important principles:
Once we have developed competent counters, much excitement of number exploration awaits! Children can then learn that they can begin counting with any number, they can count on by two's (saying every second number) or three's or any number, they can count backwards, they can teach their calculator to count ... Counting is important for the development of good number sense. From there, children can think about adding on, taking away, and many other mathematical ideas. It is known from research (and the experiences of many parents) that ordinary children develop a deep sense of number in the preschool years. Many arrive at school already having developed their own strategies to add, subtract, even multiply. We have learnt that when standard school methods are introduced too early, children can become very confused with the conflict with their own methods. The new mathematics syllabus being introduced in Queensland acknowledges that young children have their own strategies and that these should be encouraged. This is an important and laudable development but it does present a significant problem for children with Down syndrome as will be discussed in the next section.
When I first started investigating mathematics and Down syndrome to help my daughter, I thought I might be able to find the "miracle method". Perhaps unfortunately, but hardly surprisingly, there is no such thing. However, there are some principles which may make the process a little easier. A great deal of learning mathematics relies on the ability to see patterns and relationships and to develop strategies as a result. It is known from research that people with Down syndrome find it very difficult, if not impossible, to develop their own strategies. However, the good news is that if the strategies are explicitly taught, people with Down syndrome can learn to use the strategies and will use them independently. So, while other children are being encouraged to use the strategies they have discovered for themselves, children with Down syndrome will need to be directly taught an effective strategy. Other principles which have been shown to help include:
It is easy to overlook the other aspects of mathematics such as table and graph interpretation, measurement and space. The current school mathematics curriculum devotes considerable time to these aspects. However, as parents and carers, we can encourage these aspects as well. As with counting, when we find ourselves engaged in these activities, we can include our child with Down syndrome (and others in the family as well!) in the task, clearly explaining our methods. For example, if we are weighing 250g of flour, we could point out that we have to make sure the needle is on zero to start with, how we count along the scale to where the needle has to end up and how we carefully add flour until that point is reached. When the flour is weighed, we say, "That is 250 grams of flour. Look how much there is. Do you think that would fit in that cup?" and so on.
A final word to help place this discussion in perspective. Mathematics is wonderful, but it is possible to have a rich and fulfilling life without it. Parents face a challenge to help their children with Down syndrome grow towards an independent adulthood. This article has suggested ideas to help with the attainment of numeracy, but I hope the suggestions will also lead to times of enjoyment and pleasure. It is probably at least as important to enjoy the present as it is to prepare for the future.Parents, teachers or other interested people are welcome to contact the author:
On Monday, June 19, 2006 a civil rights suit was filed in the Federal court for the Southern District of Illinois naming Glen Carbon Mayor Robert Jackstadt and District 7 Superintendent Edward Hightower among several conspirators who allegedly sought to defraud District 7 out of hundreds of thousands of dollars in exchange for legal advice to help District 7 fabricate evidence, conceal material evidence, solicit perjurious testimony, and intimidate parties in an elaborate conspiracy to deny students, parents and teachers their civil rights. The suit asks for over $30 million in punitive damages and seeks to have Robert Jackstadt disbarred from the practice of law in the Southern District of Illinois. The suit names, as co-conspirators, attorneys from the St. Louis based firm of Tueth Keeney and Chicago based firm of Robbins Schwartz.
Robert Jackstadt was elected to the office of mayor of Glen Carbon, Illinois in April of 2005. Prior to running for mayor, Robert Jackstadt was briefly a member of District 7's school board. The suit alleges that the conspiracy originated when Mr. Jackstadt was on District 7's school board.
One plaintiff, Brent Ibata, has been involved in litigation against District 7 since early 2004 when District 7 allegedly failed to investigate numerous occasions of suspicious injuries to his disabled daughter. At the time, Mr. Ibata sought access to his daughter's entire educational record and after District 7 ignored several requests for his daughter's records, Mr. Ibata filed suit. The Appellate Court of Illinois has recently reversed a 2004 Circuit Court ruling that had permitted District 7 to delay turning over Mr. Ibata's child's records (Appeal No. 5-05-0092).
Surprisingly, despite Mr. Ibata's 2004 lawsuit, District 7 continues to find itself accused of concealing the school records of disabled children, while flying in a Chicago area attorney to defend the District. Mike Pashea, a parent of a disabled student in District 7 has sought access to his child's entire record and has alleged, in an ongoing special education due process hearing, that District 7 had intentionally concealed his son's records. "We have made numerous requests to view our son's entire school student record", said Mike Pashea. "And we still haven't seen the entire record."
Monday's suit alleges that District 7 actions were in retaliation for Mr. and Mrs. Ibata's attempt to advocate on behalf of their daughter. This is not the first suit to allege retaliatory actions by District 7's Superintendent. In 2003, then President of the teacher's union, Jim Price, alleged that his position as head cross-country coach was abruptly terminated after he had approached Superintendent Hightower with several complaints of inappropriate behavior on the part of the Superintendent. In 2004, a former substitute teacher filed a civil suit alleging retaliatory discharge by Superintendent Hightower after she advocated for the rights of her disabled son. District 7 won favorable rulings in both cases and Monday's suit alleges that these favorable rulings were in part due to a conspiracy to obstruct justice by fabricating evidence, intimidating witnesses, and soliciting perjurious testimony.
"There is a growing list of people who have alleged that Superintendent Hightower has retaliated against them for their advocacy on behalf of students or teachers." Brent Ibata said. "Our experiences are eerily similar. We've each attempted to approach Superintendent Hightower and District 7 with legitimate concerns and the response was overwhelmingly hostile and retaliatory. The message is clear: If you challenge District 7 as a teacher your job is at risk and if you challenge District 7 as a parent your child is at risk."[...] Mr. Ibata is a PhD/JD student graduating in May of 2007. His PhD dissertation topic is on federalism and school law. Mr. Ibata worked at New Trier High School from 1996-1999 and was an educational consultant for the School District of University City from 1999-2000.