September 2001 Issue

Our group meets on the first Friday of every month at 6:30 p.m. at Saint Anthony's Wellness Center in the Alton Square Mall. For driving directions call the Wellness Center at 462-2222.

Regional Events
September 14, 9:30 - 1:00 Prairie Capitol Convention Center, #1 Capitol Convention Center Plaza, East Adams Street (between 7th and 9th, Room B11CD, Springfield, IL and September 15, 9:30 - 1:00 Marion Travelodge & Convention Center, 2600 West DeYoung, I-57 & Route 13, Marion, IL.
Understanding Alternate Assessments. What Parents Need to Know about Education Rights under the New Individuals with Disabilities Act. Guest Speakers: Sue Easton, Illinois State Board of Education and Steve Stafford, Measured Progress. Free conference, materials, light snack and parking. For special accommodations or additional information, contact Linda Davies, Family T.I.E.S. Network, 830 South Spring Street, Springfield, IL 62704. 1 (800) 865-7842, (217) 544-5809, Fax: (217) 544-6018, E-mail:

October 16, 6:30 p.m. - 9:00 p.m. OSEP Statewide Public Input Forum. Collinsville. Public meeting to provide information about early intervention and special education services for infants, toddlers, children and youth with disabilities. For more information contact Jack Shook, Illinois State Board of Education, (217) 782-5589, Fax: (217) 782-0372, E-Mail:

blank.gif  October 22, 9:00 a.m. - 4:00 p.m. Loss for Persons with Developmental Disabilities. Seminar objective: Using formal presentation, video excerpts, and small group discussion, participants will explore the supports and barriers for persons with developmental disabilities who are grieving. Speaker: Elizabeth J. DeBrine, M.Ed., Director of the Community Membership Project at the Shriver Center in Massachusetts and currently Coordinator of Community Education at the Department of Disability and Human Development. Location: Holiday Inn, Route 57/64 & Route 15 Mt. Vernon, IL (618) 244-7100. Conference registration fee is $80 for agency staff and $45 for persons with disabilities, family members and students. For further information, contact Community Education at DHD/UIC, (312) 413-1535, TDD: (312) 413-0453, Fax: (312) 413-1621.

STARNet Region IV
September 14, 6:00 p.m. - 9:00 p.m. & 15, 8:30 a.m. - 4:00 p.m. Statewide STARNet Family Conference "You Can Make a Difference". Family-focused sessions addressing topics including Transitions, Writing Effective Individual Education Plans (IEP's), Sibling Issues, Natural Supports, and Parent/Professional Collaboration. There is no registration cost. Participants will need to pay for hotel rooms. Location: Holiday Inn Holidome, Normal, IL (309) 452-8300. Contact: Sharon Gage, 397-8930, ext. 169.

September 21, 9:00 a.m. - 1:30 p.m. STARNet Mini-Grant Showcase and Technical Assistance. Location: St. Clair County Regional Office of Education, Belleville, IL (Gallery). Mini-Grant awardees will share projects that were developed through collaboration and Mini-Grant funding. STARNet staff members will share the latest information regarding the updated guidelines from the Illinois State Board of Education, Early Childhood Division, for Mini-Grant awards. Contact: Kathy Hollowich, 397-8930, ext. 169, E-mail:

moonlight is the newsletter of the Riverbend Down Syndrome Association. It is made possible by the William M. BeDell Achievement and Resource Center, 400 South Main, Wood River, IL 62095, (618) 251-2175.

Editor: Victor Bishop
Web Site:

Early Intervention Insights by Tony Paulauski. The Arc of Illinois - Today, August 31, 2001. Reprinted with the permission of Tony Paulauski, E-mail:

During this summer, it was my pleasure to meet a couple of times with DHS Associate Secretary Carolyn Cochran Kopel. I wanted to get her perspective on Early Intervention issues and her approach to the EI system.
Having worked with Carolyn in the past, I know her to be a very hard worker and a quick study of important issues. It will come as no surprise to anyone that Carolyn's number one task on her appointment as Associate Secretary was to fix the Early Intervention System in Illinois! Members of the General Assembly wanted someone entirely responsible for the program, and Carolyn was asked to serve. In that regard, she has traveled the state meeting with families and providers, getting her own perspective on Early Intervention issues. She views the Early Intervention system as a developmental model with medical, social and educational services rather than just an educational model. One of her first acts was to recommend the withdrawal of the Early Start Rule from JCAR.
Now that the Governor has signed the new Early Intervention Act, SB 461, into law, she will get on with the job of implementing the new law in a very visible public and political system.
Carolyn intends to work closely with the Illinois Interagency Council for Early Intervention. The Council reorganized itself this summer into work groups instead of standing committees. The work groups will be time limited and issue oriented around four priority areas:

  1. Marketing & Communications
  2. Education, Training & Credentialing
  3. Quality Assurance & Best Practice
  4. Fiscal
We have seen many changes in the EI system in the past few years as well as controversy. It is now time to work with the Ass't. Secretary to develop a system that is family friendly and provides the best supports we can for infants in Illinois. We need to bring our issues to her in a positive and constructive manner so that she can do her job as a public servant. The EI system today has grown to over 11,500 infants, 40% of whom are Medicaid or Kid Care eligible, with a budget of about $100 million. We have developed great public and private support for this new law. Let's work together.

The Arc identified the following issues regarding the Early Intervention Act, SB 461. We will be working with Ass't. Secretary Kopel and Senator Rauschenberger on these issues this fall.

  1. Does the act protect children and their families who are enrolled in managed care plans against having to change service providers if their provider is not part of the family's managed care network and the provider is not allowed to enter the managed care network? What protections are in the act?
  2. Does this act address potential conflicts of interest that may arise when case management service providers also provide direct EI services to children?
  3. This act contains three different terms to describe provider qualifications: "Qualified," "Fully Credentialed" and "Enrolled Provider." What is the purpose of having these three descriptive terms in the bill? Are rates of reimbursement going to depend on the provider's level of credentials? What will the impact be, if any, on the availability of providers to serve children if a multi-tiered system of credentialing is adopted?
  4. Are you willing to consider additional changes to the Act by way of a trailer bill, SB 698, in the Veto Session if problems are identified over the summer and fall?
I hope this clarifies our support of this legislation. The protections for families required our support. Further, this now becomes law rather than rule and that strengthens our advocacy on EI issues.
Sometime things move quickly in the Capitol. This was a good decision for families.

Down Syndrome Articles
State found negligent disabled student. The ruling means that a jury will decide the damage amount by Debra Barayuga, E-mail: © Star Bulletin, June 20, 2001. Reprinted with permission of the Star Bulletin and the author.

A federal judge has ruled the state is liable for damages to a 19-year-old disabled Molokai student who was denied an appropriate education because of a shortage of qualified special-needs personnel.
     The suit, brought in June 2000 by parents Stephen L. and Laverne L. on behalf of son Aaron L., is the first case going to trial for "deliberate indifference" by the state, said their attorney, Stanley Levin.
     "The judge said they knew about severe shortage in services and didn't do anything."
     The ruling Monday by Chief U.S. District Judge David A. Ezra means that the only issue left for a jury to hear is whether there was discrimination and the amount of damages Aaron is entitled to.
     The case will go to trial in September.
     The suit was brought under the Rehabilitation Act of 1973, which forbids the state from discriminating in providing education to disabled children.
     Aaron was born with Down syndrome and has speech and language deficits, Levin said. He can speak only a couple of words at a time. He did satisfactorily in elementary school, but it was not until he entered high school that he stopped learning.
     The family had alleged that shortages in qualified special-education teachers, speech therapists and educational aides resulted in their son being denied an appropriate education.
     In his ruling issued Monday, Ezra found that state and Molokai district and school officials knew about the severe personnel shortage on Molokai yet did nothing.
     Because of the lack of services, Aaron could not be mainstreamed into a regular- education classroom and did not progress in his last four years at Molokai High School.
     At an administrative hearing requested by Aaron's parents in February 2000, the hearings officer determined that Aaron had been denied an appropriate education and services so that he could progress in his last four years of school. The state contended that it had acted in good faith and had not been intentionally indifferent or intentionally discriminatory to Aaron or his family. But the state did not offer any facts to support its position, Ezra said. Department of Education officials do not dispute that Molokai and other remote communities such as Hana on Maui, Lanai and the Leeward Coast on Oahu face continuous problems in recruiting qualified personnel willing to work in these areas.
     "We fully acknowledge that there are difficulties in providing a full range of services to all who require them," said Department of Education spokesman Greg Knudsen.
     He said the state is trying to meet that challenge by recruiting qualified personnel from out of state and providing services where needed.

Son's Challenge Becomes Dad's Lifelong Mission by Kate Schott, (708) 633-5976, E-mail: © Daily Southtown, July 11, 2001, p. D1 & 6. Reprinted with the permission of the author.

When Fritz Giertych's son was born more than 40 years ago, something else came to life.
     It was September 1960.
     Giertych was pacing through the lobby of the hospital. Doctors and nurses passed him by, he recalled, refusing to tell him if his newborn baby was OK.
     Finally, the couple were told that Tommy was born with Down syndrome.
     "At that time, we were scared," Giertych said. "The first thing you say is, 'Why did it happen to me?'"
     But it put life into perspective, Giertych said.
     On the day Tommy was born, Giertych's mission came to life.
     "For the children," Giertych says, describing his personal calling since that time.
     During the 1960s and 70s, he said, people didn't know much about the developmentally disabled.
     Giertych and his wife, Rita, visited many organizations and finally found Misericordia Home, a residential facility for the developmentally disabled in Chicago. They met a nun named Sister Walter, who told them, "'You kids take this baby home and give it all the love you can,'" Giertych said.
     "I'll never forget her," he said of the nun.
     Now, Giertych, 71, is a member of the International Order of Alhambra, a Catholic fraternal organization dedicated to helping the developmentally disabled.
     He has held many positions with the organization and now is running for the highest office, supreme commander.
     "I feel that we could be doing more than we're doing," Giertych said. "I feel we can do more for kids if we can get everyone involved."
     Alhambra helps build homes for the developmentally disabled and gives scholarships to students studying special education. The organization has 6,000 members in the United States and Canada.
     If elected, Giertych said, he wants members to be held accountable to their duties.
     "Everybody talks about (recruiting) new members," he said. "Let's get the members we have more involved."
     But winning the election isn't everything, he said.
     "I believe, regardless what happens ... we're working for the kids," he said.
     Giertych said he hopes all children born with developmental disabilities could have a life like that of his son.
     Tommy lives with three other men in a home owned by the Lansing Association of Retarded Children.
     Giertych said Tommy once was in a band called the Echoes of Hope, in which he played the marimba.
     "He sang and danced," Giertych said. "He couldn't carry a tune if he had a bucket."
     And although there have been struggles in his life, Tommy never gives up and always has a great sense of humor.
"He was in a class of his own," Giertych said. "He has destroyed more good arguments with my wife than anything."
     Giertych said things have changed dramatically since Tommy was born. The Special Olympics have thrived, and many organizations help fund programs for the developmentally disabled.
     "When Tommy was born, there was nothing, zero," he said. "It was the parents' effort (that got things accomplished). Every so often, they jump on buses and go to Springfield. If (the parents) want (a program) passed (by state officials), they go."
     And that's exactly what Giertych hopes his organization can do in the future.
     "For the kids," he said. "I always felt that way, always will. Nobody will give you the love and attention that those kids give you."

Inclusion proposal accepted! NADS News, July 2001, p. 4. Reprinted with the permission of Anne Jonatis and the authors.
The following is an excerpt from the proposal for inclusion of Colleen Cavanaugh at St. John the Evangelist Catholic School, written by the parents Shelby and Jim Cavanaugh of Crete, IL.

...From Early Intervention Colleen moved to a Special Education preschool setting where she is today. Here she is learning basic preschool concepts such as her colors and shapes and letter/number recognition. She can sight recognize her name and the names of her current classmates.
Cavanaugh Family Portrait Her receptive language is close to normal. Her social skills are age appropriate. She loves to sing and can carry a tune as well as sing many of the words to several popular children's tunes. She is delayed in her expressive speech and receives speech therapy for this. She also has difficulty with fine motor tasks such as cutting and writing. She is working on pre-writing strokes at this time. She loves school and is very well behaved. Every day she runs to the bus and climbs the stairs and gets right into her seat.
Colleen learns best from observing and modeling her siblings and peers. She can unzip and remove her own coat and can hang it on her peg. She can also put her coat on and zip it up once it has been started for her. She is learning to dress and undress herself in preparation for potty training, which we will be actively working on this spring with her younger brother Kevin. She has some difficulty with short-term memory and multiple step directions but she is improving greatly in this area. She is a very bright preschooler and could be classified as "mild".
Today, Colleen is a happy, healthy, socially outgoing little girl. One of her greatest assets is her compassion and empathy for others. She loves babies and baby dolls and plays gently and appropriately with them. While her chronological age is 4.5 years, her developmental age is slightly less than that. When we got the prenatal diagnosis we wondered what it would mean for us as a family and for her future. Now we know that given the opportunity, she is quite capable of being raised to become an independent self-sufficient adult.
I have hoped and prayed that she would be able to attend St. John the Evangelist school with her siblings. I feel that the school is our extended family and as an active parish member she belongs with this family receiving a Catholic education. The questions and "what ifs" could be endless. At this point, it is impossible to say if she will be able to attend 2nd grade or 5th grade at SJE. But we will only know if we try and give her a chance. Many children with DS who are "included" in regular classrooms are held back a year or two in the early primary grades. We are proposing doing this up front and starting her out with her younger brother's 3-year-old preschool in the fall. We feel she has the skills and talents required to be included successfully in this classroom setting. We are also proposing a dual enrollment in that she will also concurrently continue to attend her Special Ed school receiving the therapies she is currently receiving. After the first year we can reassess what her abilities are at that point and where she can be placed (4 year preschool or perhaps even Kindergarten). As the years progress, if we work together, it could be possible that she progress in the primary grades at SJE - either full time or perhaps half day (and half day at the public SPED program) but only time will tell. We are very willing to do all we can to support her and SJE in these efforts including securing and preparing modified curriculum and paying for a personal aid if she needs one. But again this is in the distant future. For now we need to just take one step at a time.
Our goals for Colleen at the Catholic school would be that she learns what it means to be part of a Catholic Community. That she continues to become a caring, respectful child with a strong Catholic faith. We want her to learn the discipline that the Catholic school offers. We strive for Colleen to become diligent, responsible and productive. We want her to become acceptable in her manner and demeanor. To accept herself and learn about her many abilities. We want to expose her to enriched curriculum and a variety of personalities - both teachers and peers. We do not expect nor do we want any extra attention from her teacher or the classroom aid. An important role for the teacher and aid will be modeling how the class should treat Colleen - which is just like any other student. At this time we would like her to have the same goals and expectations as the rest of the preschool class. And most of all we want her to have a sense of moving forward in her life successfully with her peers and siblings.
Colleen needs to be at St. John the Evangelist preschool not just for herself and her future -but also so the students can see that God makes us all a little differently but in the end she is not so different. She will be a real asset and teaching opportunity for the school and parish - if you let her.
Won't you please consider giving Colleen this opportunity to be educated with her siblings and parish family at least initially? Thank you for your consideration.

Web Wanderings
New hope in Down syndrome. Alzheimer's drug may improve abilities by Megan Miller.

Father's Journal
In Memoriam - United We Stand
In observance of those who died September 11, 2001 at the World Trade Center, the Pentagon and Pennsylvania.
Last week, Duke University Medical Center launched its arm of a nationwide, multicenter trial to determine whether the drug commercially known as Aricept is the first treatment to help people with Down syndrome overcome cognitive deficits. [...]
The multicenter trial will enroll approximately 160 people, ages 18 to 35, at about 20 centers. Half of the participants will be given Aricept and the other half will get a placebo over a 12-week period. The results may be known as early as 2002, said Susan Yaren, a spokeswoman for Pfizer.