Saturday, December 22, 2007

Missouri Autism Blue Ribbon Panel Makes Decisions

KANSAS CITY, Mo. – It is the fastest growing disorder in the country, but services for families are slow to catch up.Those are the conclusions from a report about the “state of autism” in Missouri. However, there is a blueprint for change in the works.Autism-spectrum disorder affects one out of 150 kids born in the country. On Wednesday, lawmakers came to Kansas City to let families know they are ready to respond to what they label a “crisis.”Before delivering details of the report, lawmakers toured ABC 'n D in Kansas City. The facility is just one of the metro's centers for autism, a brain disorder that prevents normal social skills in an alarming number of kids.Through intense one-on-one training at an early age, the goal of the center is to get kids ready to succeed in the classroom. Early detection and treatment is proven to dramatically influence the severity of the disorder.Senator Michael Gibbons knows Missouri is lagging behind on its services, especially after he learned a child is diagnosed every 20 minutes."I thought it was frightening and something that we wanted to find out more about,” Gibbons said. “What we doing at state government? What can we do? How can we help families?”Earlier this year, Gibbons formed a 16-member group of doctors, educators and parents called the Missouri Blue Ribbon Panel on Autism. They listened to testimony from people across the state.One of them was Lee’s Summit mother Sherri Tucker, who has a freshman-aged son with autism. "There's an awareness now and I think people know we need to do something in Missouri to catch up to the rest of the country and I think this is a good thing,” Tucker said.Tucker and her friend, Debbie Shaumeyer, both attended the meeting in Kansas City. Back in April, NBC Action News reported on their struggles to improve educational services in the Lee's Summit school district."It's a very slow moving wheel. It's a very trying process on my family," Shaumeyer said.Shaumeyer said her six-year-old son Austin is already falling way behind other students in his Lee’s Summit classes. However, she does not think it’s too late for him to turn the corner. "That's one thing that our family does hold onto at this point is hope,” she said.The report includes 36 recommendations, some of which could go into place when lawmakers reconvene for their session in January.

Thursday, October 25, 2007

Lee's Summit Tribune October 13, 2007 Article

Autism Support Group Hosts Informational Gathering

By Chase Jordan
Tribune Staff

Families and autism professionals came together for support and to share information during Autism Awareness Night.

The Lee's Summit Autism Support Group brought in about 26 service providers and more than 58 guests attended the event Monday, Oct. 1 at the Legacy Christian Church in Lee's Summit.

Vanessa Shields, of Lee's Summit, attended the event and has one son with autism.

"It's so hard to get information," Shields said. "There's really no on e central location that doesn't overwhelm you."

Joyce Lindsey has three sons and one of them is diagnosed with autism.

"It was an excellent turnout," Lindsey said. "I feel that it really served a need in the community. We had people coming from both sides of the state line."

Co-founders Sherri Tucker and Debra Shaumeyer said the purpose of the event was to make families with autistic children aware of available services and to network with other families.

"My phone rang from 9 o'clock until 5:30, and half of them were families that just got a diagnosis in the last week," Tucker said. "There's nowhere to go, so they're going to network and meet other families. That's probably even more important than the providers."

Shaumeyer's 6-year-old son, Austin, was diagnosed with autism near the age of 4.

"We started the group because we have a lot of disappointed families right now in the school district," she said. "Our purpose is to work with the Lee's Summit R-7 School District to make change, to work together as a team. Knowledge is power."

The group's co-founders were pleased with the turnout and the volunteers.

"We had to turn service providers away because we were limited with the space," Shaumeyer said.

Tucker said the gathering helped service providers network with families they would otherwise have difficulty finding.

Kelly Lee, autism education coordinator for the R-7 district and founder of Camp Encourage, attended the event to provide information to guests.

"I think it's wonderful to see so many families and it's wonderful to have this many resources to point those families to and get encouragement and the support that they need," Lee said.

She said there are some 200 students in the district diagnosed with some form of autism.

"Supporting families with children on the spectrum is something that is very close to my heart," Lee said. "I think it's extremely crucial that the district collaborates with parents."

Nancy Michael, of ABC'nD Autism Center in Kansas City, provides services for children 18 months old to children in the fourth grade.

"I met a lot of families interested in the Autism Center and some have been interested in occupational therapy and also just questions about their child's services." Michael said. "I think it's a wonderful opportunity for parents to learn about a vast number of services for children with autism because they can come and see the displays and talk to those people that are part of those programs, and I also think it's a great time for those families to network."

Georgia Mueller, Kansas City regional coordinator for MPACT, said her group works to ensure that all children with special needs receive an education that allows them to achieve their personal goals.

"We teach families how to become advocates for children, so we teach them the laws," Mueller said. "We teach them how to understand their rights and responsibilities and understand the rights and responsibilities of the school, and that way when they go to ask for appropriate service for their students they know that they're standing on solid ground."

Mueller has a son with autism in the Center School District.

"He actually has a pretty severe level and we had to work very hard with our school district to get them to do the right thing," she said. "I know that most school districts would not automatically do what we were able to gain. Most parents don't really like to ask what's appropriate for their child, whatever that my be. It's frustrating."

JJ Ringgold, of Lee's Summit, attended the event and is the parent of an autistic child.

"I got some new information this time about nutrition," Ringgold said. "I felt comfortable talking to them."

Clare Jeffress, of Greenwood has five children and two of them have autism.

"It was very wonderful. I think it should happen every six months." Jeffress said.

LSASG Human Interest Greenwood Dispatch

By Katy Keller

One year ago, Chris and Cheryl Martin of Blue Springs were delivered the heart wrenching news from their doctor that their 6-year-old son, Josh, had autism.

Although the pair had a feeling before the visit that their son had the disorder, the couple said they knew it was important to educate themselves about autism. "The best thing you can do for your child is to be your child's advocate," Cheryl explained.

The Martins were on of dozens of families who attended the 2nd annual Lee's Summit Autism Awareness Night on Oct. 1. The free event, organized by the Lee's Summit Autism Support Group, provided families with resources to assist them in raising and educating children with autism spectrum disorders.

The hearts behind the Lee's Summit Autism Support Group are Debbie Shaumeyer of Greenwood, and Sherri Tucker of Lee's Summit. The ladies formed the group in Nov. 2005 after seeing the need of support for parents of autistic children in R-7 School District. Shaumeyer's 5-year-old son, Austin, has autism. Tucker's 14-year-old son, Jake, has Asperger's syndrome.

The R-7 School district has begun to work more closely with the local autism group. In addition, Shaumeyer and Tucker are going beyond school boundaries and reaching into the state legislature to speak about the impact of autism.

Last month, Shaumeyer testified to the Missouri Autism Blue Ribbon Panel on the U.M.K.C. campus. She focused her statement on insurance and the lack of coverage for autism families.

The 16-member Blue Ribbon Panel is comprised of senators, psychologists, and members of the Missouri Autism Coalition. The group ultimately makes decisions based off of testimony of parents and experts, then passes their findings onto state legislators to tackle autism in Missouri.

Shaumeyer revealed she was terrified about speaking, but she knew that she was testifying on behalf of Austin.

"I don't think any of them truly knew how far behind the state of Missouri is in tackling autism," Tucker asserted. "You can go and talk about issues, because issues are easy to talk about. But when you go and talk about your kid, that's hard thing to talk about."

Since first forming the Lee's Summit Autism Support Group, Shaumeyer has seen autism come to the surface in the community, ten fold. However, Tucker sees their journey differently.

"I think that we are getting more frustrated than when we started because when we started, we thought the issues were this big," Tucker explained by pinching her fingers together, "and now we know the issues are this big," she clarified with wide open arms.

Yet, the colleagues and friends agree that their fight for autism is infinite.

"Our fight is endless, our advocacy and our battle to make changes with autism is endless. It will be one place after another, forever," Shaumeyer expressed.

The ultimate goal, Tucker said, is about unity, community, and reaching families.

"I want to make sure that everybody (affected by autism in the R-7 School District) knows what their child needs, and finds a way to get it, and that they're not alone."

Dispatch Bits

The Lee's Summit Autism Support Group meets on the first Monday of each month at the Legacy Christian Church of Lee's Summit, 2150 East Langsford Road. For more information, visit

Tuesday, August 28, 2007

Lee's Summit Tribune Article

Lee's Summit families start autism support group

Group bonds together in time of funding shortfall for special education

By Chase Jordan
Tribune Staff

Sherri Tucker and her family moved to Lee's Summit because she believed her son would receive the best education here.

Jacob was diagnosed with autism 11 years ago. He is now 14 years old.

"I chose where we moved in Kansas City, solely on my son. I didn't care about location. I wanted to live where Jacob had the best opportunity," Tucker said. "We moved here when he was in kindergarten."

The family is not pleased with the R-7 School District.

"We can be living in Raytown or Independence and pay less tax and pay less for the water bill and still not get any worse of an education," Tucker said.

In November 1006, Tucker and Debra Shaumeyer created the Lee's Summit Autism Support Group. Shaumeyer is the mother of a 5-year-old autistic son.

"What we want to do is get the school district to work with us to give the best education they can. In the sate of Missouri that's not an easy thing to do," Tucker said. "Most of the time we talk about what goes on in the school district."

Tucker described Individualized Education Plan meetings, which are attended by seven to 15 school officials.

"So you sit there and these people tell you that your child is never going to be normal, which is a very hard thing to handle," Tucker said. "You assume that these people are giving you all the right information and you believe them and you sign on the dotted line. What you never find out is that those people are never going to give you what you need until you're smart enough to know what you need and you fight for it."

Tucker said Missouri is 48th in the country for special education funding.

"In the state of Missouri, when your kid gets diagnosed with autism, the doctor ways go forth, you're done, and you're on your own," she said. "We're working on legislative issues and trying to work with the school district."

Senator Matt Bartle, of Lee's Summit, said Missourians are not interested in raising taxes. He said Missourians rejected the last seven ballot proposals to raise taxes. (I've read that there is a surplus. This issue has nothing to do with raising taxes)

"We're ranked 48 or 49 in a lot of things," Bartle said. "We're a low spending state because we're a low taxing state." Bartle said autism is a problem that Missouri is going to have to deal with.

"Autism is a growing problem in Missouri and in the United States, and it's putting a strain on social services and the school system," he said. "We have to figure out what's causing autism. It's a major cost drainer in Medicaid and the education budget."

According to the Lee's Summit group, there are more than 210 students diagnosed with autism in the district. They believe that the teachers in the district should be trained in autism.

"A lot of these kids with autism are in special education, so their teacher would be trained in autism," Tucker said. "But my son is not in special ed, he's in regular ed. So he has seven teachers everyday that don't have a clue and they're going to educate my son."

Tucker said there have been times when her son became sick or had "meltdowns" because of the different expectations of teachers.

Jerry Keimig, R-7 director of special services, said that it is not possible to train every teacher in the district.

"We provide the most comprehensive autism training than any other school district that I'm aware of," Keimig said. "It's not feasible to train every teacher for every disorder. There are 50 to 60 different medical or emotional diagnoses."

The district hosted a four-day workshop in June.

"We try to make autism a priority. I don't know any other disability that we do four-day workshops on," Keimig said.

Stacey Martin, autism specialist, said about 75 people participated in the workshop. (I would say that at least half of those were not employees of the district. Five or six were members of our group)

"We try to target those teachers who have not had training before. We do our very best to make sure they have the training they need to meet the needs of students," Martin said. "We are always looking for new things to learn about autism. We're always eager to help these kids."

Superintendent Dr. David McGehee said it would be difficult to make every teacher an expert, but believes they should have some basic knowledge of autism if they are teaching a diagnosed child.

"There are opportunities for the teachers to be trained," McGehee said. "You can't deal with all students the same because they have different needs. It's a challenge in today's education system."

McGehee said the support group does a good job dealing with autism.
"I appreciate Mrs. Tucker's approach in the group. I don't look at them as antagonist or anything because we need to find a common ground," McGehee said. "Sometimes people perceive it as a fight. I perceive it as continuing dialog."

Tucker said she wants to work with the school district to improve in this area. "I don't want to be negative, but I want to let people know there're other people with the same issues," Tucker said. "I want people to know that we need to progress in this area."

Wednesday, August 22, 2007


The Lee's Summit R-7 School District is among 166 Missouri districts being designated as "District Improvement Level 1," based on requirements of the No Child Left Behind Act (NCLB) of 2001. Although the goals of No Child Left Behind to ensure success for each child and to provide for school district accountability are worthwhile, the law has several flaws, especially in its accountability mechanism.

Like a number of the school districts receiving this designation, the R-7 School District has earned the state's coveted Distinction In Performance Award all six years it has been offered. In fact, the district is one of a handful of Missouri districts to earn this honor all six years with a perfect score each year. This year again, R-7 students scored above the state average in all areas on the 2007 Missouri Assessment Program (MAP) tests.

The R-7 School District's designation as "District Improvement Level 1" was based on the scores of a very small number of students in two small sub-groups – special-education and English language learners (students who speak English as a second language) in the area of communication arts. These special-needs sub-groups are required to meet the same high standards on the Missouri Assessment Program communication-arts tests with no exam modifications that would take the students' disabilities or special language challenges into account. A misleading aspect of this legislation is that only districts with a large enough sub-group population can be identified, thus holding harmless smaller districts with similar or lower levels of achievement.

While the intent of No Child Left Behind is admirable, this particular component does not pass the "common sense" standard when the test scores of a small number of students – less than 2 percent for Lee's Summit R-7 – cause a successful school district to be placed in this category. Fortunately, the United States Congress plans to consider revisions to No Child Left Behind this fall, and it is possible that this aspect of the law may change. In the meantime, R-7 School District staff will continue to work tirelessly to meet the needs of each child.

To read a letter with additional information about this federal requirement from Dr. David McGehee, Lee's Summit R-7 School District superintendent, please visit the following web address:

Monday, July 30, 2007

Missouri Blue Ribbon Panel

The Blue Ribbon Panel of Missouri is scheduling hearings around the state to hear public testimony on autism–related issues and to hear testimony from the various autism-related fields of expertise. The locations will include Jefferson City, Cape Girardeau, Springfield, St. Louis and Kansas City.

All proceedings are open to the public, with an open forum scheduled from 11 a.m. to 1 p.m. to give members of the public an opportunity to address the panel directly. The panel’s charge is to determine the “State of Autism” in Missouri including services, teaching, training and research, and to make recommendations for improving the quality of life across the lifespan of individuals with autism and their families.

With the Centers for Disease Control (CDC) now reporting an autism spectrum diagnosis in one out of 150 children, Sen. Michael Gibbons officially announced the Blue Ribbon Panel on Autism on April 26. Sen. Scott Rupp of Wentzville will serve as the panel chairperson, along with Ron Ashworth of St. Louis as vice chairman.

Interested parties wishing to schedule a time to participate in public testimony may call Sen. Rupp’s office in Jefferson City at (573) 751-1282 or submit written testimony by e-mail to or by mail to Sen. Scott Rupp, Attn: Blue Ribbon Panel on Autism, State Capitol Building, Room 426, Jefferson City, MO 65101, FAX: (573) 526-4766.

For more information, contact Melissa DeStefano at (573) 751-1282 or contact representatives of the Missouri Autism Coalition, Gay Tompkins at (314) 800-3025; or Ginger King-Luetkemeyer at (573) 395-4626.

Panel Nominees by Region include:
Senator Scott Rupp, (R-Wentzville) Chairman
Senator Jolie Justus, (D-Kansas City)

St. Louis Region:
Ron Ashworth, Vice Chairman
Julie Roscoe
Randy Sanders
Bill Bolster

Kansas City Region:
Tom Davis
Robin Russell

Dr. Steve Kanne
Dr. Laurie Fowler

Southeast Missouri:
Mamie Benson (Kennett, MO)

Southwest Missouri:
Shawn Williams
Nikki Straw

Northeast Missouri:
Dr. Cindy Dowis

Heidi Atkins Lieberman, DESE
Julia Kauffman, MRDD