July 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.

The Riverbend Down Syndrome Association is a support group chapter of the Down Syndrome Association of Greater St. Louis (DSAGST), who received a generous donation from the St. Louis Ram's offensive linemen. Read about First Downs for Down Syndrome Program in this issue. One of the accompanying photographs is of Kate, 2½ years old, dancing at the appreciation picnic, daughter of Mike and Mary Trudell, of Bethalto, members of our support group.
Under a separate mailing a copy of the Spring/Summer 2001 issue of "Fun Times" is being sent, courtesy of Linda Orso, Project Specialist, Lewis & Clark Community College.

Regional Events
July 10-11 Kids: Our Future. Project Choices Summer Institute. Crowne Plaza Hotel, Springfield, IL: (217) 529-7777. Registration: Adults: $110; parents of children with a disability: $30/parent, $50/couple. For more information and to register: http://www.projectchoices.org or contact Project Choices, SASED Administrive Center, 6S331 Cornwall Road, Naperville, IL 60540. (630) 778-4508, Fax: (630) 778-1791, E-mail: ECHOICES@aol.com

blank.gif  September 8th 11:30 a.m. 2001 Buddy Walk at Busch Stadium. This year the Down Syndrome Association of Greater St. Louis has teamed up the St. Louis Cardinals to promote Down Syndrome awareness. The day will begin with a pre-game party from 10:00 a.m. until 11:30 a.m. in the Busch Stadium bus lot, which is located south of the stadium. There will be food, games, prizes, DJ and Fred Bird. The Buddy Walk will begin at 11:30 a.m. with a parade on the warning track of Busch Stadium. Everyone who purchases a ticket will receive the 2001 Buddy Walk at Busch Stadium T-shirt. At noon, our group will them be seated in the DSAGST group section - terrace level seating. The first pitch will be a 12:15 p.m. as the St. Louis Cardinals play against the Los Angeles Dodgers. The DSAGST received a $7,500 check from Cardinals Care for sponsorship of the 2001 Buddy Walk. For more information, call (314) 961-2504 option 1.

STARNet Region IV
July 12, 9:00 a.m. - 3:00 p.m. Understanding Speech and Language Delays presented by Dr. Debra Reichert Hoge, Ed.D., CCC/SLP, associate professor in the Department of Special Education and Communication disorders at SIUE. This workshop will provide participants with an opportunity to:

  • Become familiar with the range of "typical" speech and language behavior
  • Relate individual differences to developmental milestones
  • Understand "typical" versus "delayed" versus "disordered" communication
  • Learn how family language use and culture impact communication skills
  • Explore the language/literacy link
  • Learn when to refer to special education and related services.
Location: Rend Lake Resort. For further information contact Kathy Hollowich, 397-8930, ext. 170, E-mail: khollow@stclair.k12.il.us

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: http://www.riverbendds.org/

Advocates Receive Hard News. Legislature Fails to Increase Funding for Family Assistance Programs. The Family Support Network, Spring 2001, p. 1-2. Reprinted with the permission of Charlotte Cronin, Family Support Network Director, 5739 West Martindale Lane, Peoria, IL 61615. (309) 693-8981, Fax: (309) 693-8962, E-mail: CharlotteCronin@home.com. URL: www.familysupportnetwork.org

Thursday, May 30th, the Family Support Network (FSN) received the hard news that despite the tremendous efforts of advocates and some very committed policymakers, the Family Assistance and Home-Based Support Services Programs (FA/HBSSP) had not been slated to receive increased funding in the State of Illinois Fiscal 2002 budget.
Though funding does become available from time to time through other resources, this means it is unlikely that new names will be selected for the programs over the next 12 months.
The initiative to increase funding to the FA/HBSSP began in December when the FSN launched its "Cookie Campaign". Plates and platters of cookies were delivered to Governor Ryan, DHS Secretary Linda Renée Baker and all 177 legislators. We know these same folks also received hundreds of letters mailed by our members.
The Family Support Network received its first setback in February when Governor George Ryan did not include an increase in the FA/HBSSP in his Budget Address to the Illinois General Assembly. This speech is one of many steps that take place every year as the State of Illinois budget is developed. The budget then has to be passed into law by our Illinois State Representatives and Senators and signed by the Governor to be implemented on July 1. The budget that has just been passed by the Illinois General Assembly will be referred to as the Fiscal 2002 budget as that is the year in which it ends.
The FSN struggled to develop a new strategy. With as many as 5000 adults and families in the "potential applicants pool", quitting was not an option. Then, House Minority Leader Lee Daniels announced his initiative for $300 million new dollars to support people with disabilities. Some of Leader Daniel's proposal, such as the $1/hr. increase for direct-care workers, was already in the Governor's proposed budget.
Most importantly for us, Leader Daniels included $7 million additional dollars in that initiative for increased funding for the Family Assistance and Home-Based Support Services Programs!!
Leader Daniels, who is the father of an adult daughter who has developmental disabilities, is also the "father" of the Family Assistance and Home-Based Support Services Programs, responsible for the legislation that originally brought the programs into existence in 1989. He has been a leader in advocating for programs that support individuals with disabilities and their families. Thanks, Leader Daniels!
In April, Charlotte Cronin of the Family Support Network and Representative Rick Winkel met with Leader Daniels to find out how the FSN could support his efforts. He asked us to contact our state legislators, asking them to sign letters of support to their caucus leaders and the Governor indicating that the $7 million increase for the FA/HBSSP programs is a priority and should be included in the Fiscal 2002 budget. Thus, a campaign to educate policymakers about the importance of this increased funding began. Charlotte traveled to the Capitol from Peoria six different days over two weeks to distribute information and gather signatures. Via e-mail, we collaborated with you, our membership, asking you to contact your legislators in anticipation of her visit. It was a whirlwind and an exhausting two weeks!
Big thanks to Representatives Rick Winkel from Champaign-Urbana and Mike Smith from Canton who carried the letters to their colleagues on the House floor and secured signatures!
The budget bill that was finally passed is the result of negotiations between representatives of the four caucus leaders and the Governor's office. Every dollar spent by the state of Illinois over the next year has been budgeted for in this one law, whether it is for services for people with disabilities, school funding, potholes, stadiums or museums.
The Caucus leaders represent the Republican and Democratic leadership in the Illinois House and Senate. They are Senate President Pate Philip, Senate Minority Leader Emily Jones, Jr., House Speaker Michael Madigan, and House Minority Leader Lee Daniels.
The disability community did have one wonderful piece of news to celebrate. The $1/hr. increase for direct-care workers and the 2% cost of living increase were included in the final budget. This funding is critical to the provision of quality care as providers of direct care services to people with developmental disabilities are often paid less than workers at McDonald's!
One big lesson learned this spring has been the importance of building relationships with our local legislators when they are in their home districts.
Even though our goals for the FA/HBSSP programs haven't been realized this year, we must not forget our past successes. We have great power!
We need to continue to let our policymakers know that the Family Assistance and Home-Based Support Services Programs are important to us and that they have been very successful in supporting people with disabilities and their families in Illinois. Call, visit, or write your local legislator. Tell him or her your story. There are over 5000 adults and families waiting for these services.
Remember: "There's No Place Like Home!!"

Early Intervention Legislation Passes. The Arc of Illinois - Today, June 8, 2001. Reprinted with the permission of Tony Paulauski, E-mail: TonyPaulauski@aol.com.

Last week in the final hours of the legislative session, Senate Bill 461 passed the Senate unanimously. It is now on its way to the Governor for his signature. The bill was not without some controversy, and The Arc had not taken an official position on the bill until the very end of the legislative session. I wanted to take this opportunity to explain our support of SB 461 because The Arc and others were asking to delay the bill for a vote until the Fall Session to address some concerns in the bill.
You will recall that Early Intervention was running a large deficit because of increased enrollment. Over 12,000 infants are now enrolled and a few years ago there were only 4,000. The Bureau of the Budget had also recommended that a Two Tiered Early Intervention system be adopted. Legislators and advocates were greatly concerned over this recommendation and began meetings with Secretary Baker and the Governor's Office to seek other options. We reached agreement after much give and take on everyone's part.
As a result, the Early Intervention System remained as an entitlement to eligible infants within a single EI system. The EI budget was increased from $54 million to $100 million with the state's share of that budget rising to $72 million from $36 million. This represents a large commitment on the Governor's part. The federal share of the EI budget is only $16 million, but the federal share insures the entitlement to families and federal protections such as due process, etc. These were important concessions on the state's part. As part of these discussions, it was agreed that Family Fees would be implemented, that the families' private insurance would be used to pay for EI services and expert guidelines would be developed. This was quite a compromise on the advocate's part, but the single EI system was insured as well as the entitlement.
What we did not anticipate was some of the problems that would arise about enrolling new EI providers in insurance networks and managed care restrictions. Some EI providers had never billed private insurance for EI services. This is new to many of us. In addition, we were quickly finding out that some insurance companies were denying the enrollment of new EI providers into their managed care networks. Because of this major unanticipated issue (there were others), The Arc began asking legislators to delay a vote on SB 461 until this issue could be resolved. What we learned was that the managed care provisions were beyond SB 461and not related to this bill so much as really related to the legislative agreement with the Governor's Office on the use of private insurance. Consequently, The Arc was now being asked to oppose the bill because of these important issues by some of our sister associations.
The session was about to end and SB 461 has some important protections for families. I realized that the managed care provisions were going into place regardless of the status of this bill. I therefore chose to support the legislation based upon agreement I reached with Senator Rauschenberger, the Chief Sponsor of SB 461, just before the bill was to be heard in committee. The Senator agreed that we would look into the managed care provision and other issues between now and the Fall Veto Session. The Arc would have our concerns read into the record of the Senate debate on SB 461. As a result of our discussions with Senator Rauschenberger. I presented testimony on support of SB 461.
I have listed here some of the main provisions of SB 461 that I thought were important to families in Illinois that required our advocacy beyond the managed care provisions.

  1. The definition of eligible infants in this bill now include infants enrolled in the program who progress to less than a 30% delay. These infants will now continue to be entitled to EI services if the "measurable delay...is at least at the mean of the child's age equivalent peers; or having been determined by the multidisciplinary individualized family service plan team (IFSP) to require the continuation of EI services..." This is very important. Infants could have been denied EI services if they had progressed to less than the 30% delay. For this reason alone, The Arc must support the bill, but there are others.
  2. "...the multidisciplinary team shall consult the lead agency's therapy guidelines and its designated experts, if any, to help determine appropriate services and the frequency and intensity of those services. All services in the IFSP must be justified by the multidisciplinary assessment of the unique strengths and needs of the infant or toddler and must be appropriate to meet those needs. At the periodic reviews, the team shall determine whether modification or revision of the outcomes or services is necessary." This is major. The multidisciplinary team determines services along with the family. The expert guidelines become consultive to the process. This follows federal law as well.
  3. Other important reasons to support this bill: "...the early intervention program will pay for all EI services...not covered under the family's private insurance."
  4. "That services will not be delayed due to any rules or restrictions under the family's insurance plan."
  5. "The family may request...a determination of an exemption from private insurance."
  6. "Responsibility for co-payments or co-insurance under a family's private insurance plan will be transferred to the lead agency's central billing office."
  7. "The provider may under no circumstances bill the family for the difference between its charge for services and that which has been paid by the insurance carrier or by the State."
  8. "Families of children with insurance coverage...shall incur no greater or less direct out-of-pocket expenses for EI services than families who are not insured." Families therefore do not have to pay deductibles.
  9. Lastly, a Legislative Advisory Committee will be formed to monitor the EI system and these changes.
As part of our agreement with Senator Rauschenberger, Senator Radogno read the following questions regarding SB 461 into the Senate record:
  1. Does the bill 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 bill?
  2. I understand that Federal law requires states to make mediation available to families as a way to resolve disputes arising under the EI program. Does this bill address mediation in any way? Does DHS currently offer mediation?
  3. Does this bill address potential conflicts of interest that may arise when case management service providers also provide direct EI services to children?
  4. This bill contains three different terms to describe provider qualifications: "Qualified," "Fully Credentialed' and "Enrolled Provider." What is the purpose for 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?
  5. 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
Lekotek Toy Lending Library has Learning, Fun by Trisha L. Brown, E-mail: thoward@post-dispatch.com (618) 659-3640. Post-Dispatch, Alton Area Post, April 16, 2001, p. AA1 & 7. Reprinted with permission of the St. Louis Post-Dispatch, copyright ©2001 granted by Annette Reavling, Executive Assistant, E-mail: areavling@post-dispatch.com. Electronic reprint permission granted by Dale Singer, Online News Editor, E-mail: dales@post-dispatch.com. URL: http://www.stltoday.com/.
The Library, which operates out of the Alton office of the Easter Seal Society of Southwestern Illinois, has about 2,500 toys, many of them adapted for use by children with developmental or physical disabilities.

ALTON — Most children are born knowing how to play with toys.
     Others have to learn. And it's Donna Scheidegger's job to teach them.
     Scheidegger runs the Lekotek Toy Lending Library, which operates out of, the Alton office of the Easter Seal Society of Southwestern Illinois.
     The library has about 2,500 toys, many of them adapted for use by children with developmental or physical disabilities.
     There is a bingo game that uses sounds instead of numbers, so that a blind child can serve as the game's caller.
     There are toys that help children with physical disabilities develop their motor skills, lighting up or making sounds when touched. Many of these toys can be hooked together, so that touching a button on one toy will activate a second one, such as a motorized truck. Some of these toys cost up to $400.
     "Children learn through toys," said Scheidegger, who holds a master's degree in special education and adapts some of the toys herself. "These toys allow the child to develop to the highest level possible."
     Last week, Scheidegger met in her play room with Mark Sivia, 5, of Meadowbrook and his mother, Micki, for their monthly appointment. Their first task: to play a game that combines sights and smells.
     Mark, who was recently diagnosed with autism, fidgets as the game draws to a close. He wants to win.
     But even though his mother beats him, Mark throws his arms around her for a big hug.
     "Yea, you won!" Mark cries. "Mom won!"
     This is a major change, Sivia said. When Mark started the Lekotek program nearly two years ago, he would throw a fit or hide under the table if he lost a game. Sivia credits Lekotek - and Scheidegger - for helping to break that pattern.
     "A lot of kids don't like to lose, but a kid with an autistic disorder takes that to an extreme," Sivia said, reflecting the next day on Mark's progress. "That was a big deal yesterday. Not only did he not throw a fit, he was genuinely happy for me."
     Scheidegger lends the library's toys to children and their families as far north as Jersey County and as far south as Monroe County - more than 45 children in all, with 12 more on a waiting list to get into the program. She meets with them in her Alton office, or travels to their homes or day care centers to bring them new toys.
     The Lekotek concept originated in Sweden, Scheidegger said, where parents of children with disabilities would modify toys for their children to use. The modifications were expensive, and the children sometimes got bored or outgrew the special toys. So their parents started trading the toys around. Scheidegger got her introduction to Lekotek after her daughter, Lauren, now 17, was born with numerous disabilities, including spina bifida, heart defects and cognitive problems.
     She knows how helpless parents can feel when they are expected to be their child's caretakers and medical specialists.
     "The parents can't see themselves as carefree, happy parents," she said. "They have to deal with all these other problems."
     So Scheidegger provides reading materials and resources for the parents as well as their children. She keeps books about parenting children with such disabilities as cerebral palsy, autism, Down syndrome and blindness.
     At least one of the child's parents must attend each Lekotek session.
     "I work with the parents to help them understand how to work with the child," Scheidegger said. "It allows these families to see the child as a child first, and the disability second."
     Sivia believes in the program, for Mark and for herself.
     Mark's interest in toys has expanded, Sivia said. He used to play only with school buses. But Mark has enjoyed some of the Lekotek toys so much that Sivia has purchased similar toys for him to keep.
     Scheidegger also picks out toys that Mark can use to play at home with his brothers, 9-year-old Andrew and 3-year-old Joshua.
     And Sivia has learned to live with some of Mark's habits, such as lining up toy cars along a store shelf or playing with a toy the same way every time. She is even considering studying for a career as an occupational therapy assistant.
     "You learn it's OK to make playing a little easy for them, more enjoyable for them," Sivia said. "As parents, you're always trying to go to the next level, to push. Donna teaches us just to enjoy it."

First Annual DSAGSL Appreciation Picnic. A Huge Success! DSA Family Connection, Vol. 7, Issue 3. June/July 2001. Reprinted with the permission of Linda Kronmiller, Editor, E-mail: DSAGSLNewsletter@aol.com

On May 19th, the DSAGSL held ifs first Appreciation Picnic at the Knights of Columbus-Duchesne Council in Florissant.
Beth Schroeder and her son, Ethan presented awards to the individual Ram's players that donated $38,000 through our First Downs for Down Syndrome Program. Accepting the awards were offensive linemen Ryan Tucker, Tom Nutten and John St. Clair, who also signed photos and mini footballs for our families!
Awards were also presented to Dennis Davis at Infinity Outdoors, who has provided us with two Billboards promoting Down syndrome awareness in the St. Louis area. The billboards move from location to location to ensure our message reaches many people! The latest sighting is going east on 70, right near the airport. Have you seen it?

Rams $38,000 Check
From left: Beth Schroeder, Rams Offensive Linemen Ryan Tucker, Tom Nutten and John St. Claire, Hank Schuppert. Holding the check are Tyler Schuppert and Ethan Schroeder.
Kate Trudell Dancing
Two of our littlest members take a twirl on the dance floor.

DSA President, Karen Kramer, presented the DSAGSL Board members and volunteers with lovely Thank You books and flowers for their efforts throughout the year. It is because of the efforts of these volunteers, that we have a Down syndrome association here in St. Louis.
Over 300 persons were in attendance, all enjoying delicious food, two inflatable football games, music and dancing, and a visit from Ronald McDonald.
A special thank you to Beth Schroeder and Gary Behlman for coordinating this event and making it a great time for all!
Everyone left with autographs and smiles!

Father's Journal
Educational Toys — E pur si muove
Our friends feel sorry for my son Emmanuel because his favorite toys are books, flash cards, foreign language videos and musical instruments. They bring covert innocuous gifts: stuffed purple animals, hot wheel cars, anything that can not be labeled educational to save Emmanuel from inequity, but my son has taken to counting and sorting his cars.
Web Wanderings
Brush painter moves beyond Down syndrome. Award-winning artist Raymond Hu of Alamo shares his talent with Pleasanton Middle School art class. Contra Costa Times, Walnut Creek, CA. June 11, 2001. URL: http://www.contracostatimes.com/mld/cctimes/
See also: Hu, Raymond (1998) The Eyes of Raymond Hu. Brush Paintings. Cambridge, MA: Brookline Books. ISBN 187852920X and http://www-atdp.berkeley.edu/1623/students/jason/Raymond.html

Artist Emerges With Works in a 'Private Language.' Judith Scott, who has Down syndrome, does not speak, hear, read or write. No one knows for sure if she knows what she is creating. But some art experts seem as fascinated with her pieces as she is with making them. URL: http://www.nytimes.com/auth/login?URI=http://www.nytimes.com/2001/06/25/national/25JUDY.html&OQ=todaysheadlines
See also: John M. MacGregor (1999) Metamorphosis: The Fiber Art of Judith Scott. The Outsider Artist and the Experience of Down's Syndrome. Oakland, CA: Creative Growth Center. ISBN 0967316006.