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Lifeline Online
Summer 2010 Issue 105
News for the Investigators, Staff and Friends of the Life Span Institute

FEATURED

Breakthrough in language analysis finds possible autism screen

A new automated vocal analysis technology could fundamentally change the study of language development as well as the screening for autism spectrum disorders and language delay, reports a study in the July 19 online Proceedings of the National Academy of Sciences. Read full story

Schroeder returns to direct project of a lifetime

Retired LSI Director and Professor Emeritus Stephen Schroeder is glowing these days. As the principal investigator of a new NIH Fogarty International Center grant, he will be fulfilling a lifelong dream to research disability prevention and oversee the first early intervention program for disability in Lima, Peru, a place near and dear to his heart, the Centro Ann Sullivan del Peru (CASP). Read full story

NEWS

Children's Campus opens its doors

The Children's Campus of Kansas City (CCKC) and the Educare of Kansas City held its grand opening on June 8, an event attended by some 400 community members, well-wishers and representatives from public and private supporters. Read full story and other news

HONORS

Special Ed investigators, grad student, receive awards

Two LSI- affiliated scientists have received one-year professorships in the Department of Special Education for the 2010-11 academic year, awards made possible by former KU Chancellor Gene A. Budig. See full story

MILESTONES

Life Span employees honored for years of service

Twenty-five LSI investigators were recognized for their years of service at a ceremony held in May on the KU-Lawrence campus.See full story

PROJECT DEVELOPMENT NEWS

LSI investigators received 10 new awards in the most recent quarter,
including two from the U.S. Department of Education. See the complete list.

NEWS

On Monday, July 26, the City of Lawrence celebrates the 20th Anniversary of the Americans with Disabilities Act 6-8 p.m. at South Park. Speakers include Mayor Mike Amyx, Douglas County Executive Craig Weinaug, Glen White, director of the LSI’s RTCIL, and Tiffany Nickel, Ms. Wheelchair Kansas.

The ADA at 20

July 26 marks the 20th anniversary of the Americans with Disabilities Act of 1990 or ADA.

Disability – its prevention, identification, treatment, amelioration and accommodation vis-á-vis society – has historically driven part of the mission of the Life Span Institute.  Three of the Institute’s affiliated research centers (the Beach Center on Disability, the Research and Training Center of Independent Living and the Kansas University Center of Developmental Disabilities) are closely linked with developing evidence-based assistance and training in response to sweeping changes in disability law and policy. 

Several Life Span Institute affiliated faculty and research staff speak of the impact of the ADA as individuals with disabilities or parents of children with disability: 


Denise Lance, Ph.D. Research Associate/Consumer Activities Coordinator, the Kansas University Center on Developmental Disabilities

The most significant change I have seen is in physical access.  It is exciting to visit new places such as the Legends in KCK and the Power and Light District in Kansas City, MO and see how ramps and elevators have been incorporated into the architecture.  Older buildings at my alma mater, William Jewell College, were retrofitted for accessibility a few years ago.  Although too late for me, I am glad that other students with disabilities can access more than the first floor of some lovely campus buildings.  I built a house seven years ago, and the architect did a fantastic job making the place accessible for me, thanks to ADA guidelines.  

Unfortunately, laws cannot mandate attitudes, and I have not seen a drastic change in attitudes toward individuals with disabilities in the last 20 years.  I still encounter misconceptions often among the general public, and stereotypes still prevail in media and recent literary offerings.  Although ADA mandates that “reasonable accommodations” be made, there are many on waiting lists for supports that would allow them to take advantage of accommodations offered.  For example, a person in rural Kansas may have an offer to work in an office that has a computer with assistive technology in a neighboring town.  However, if funds are not available to hire a personal assistant help her eat, get dressed, and drive her to work, she cannot take the job. 

Although ADA gets those of us with disabilities through the door, it does not mean that supports will be available inside for us to fully participate.


Dorothy Nary, A.B.D., NIH Doctoral Trainee, Gerontology Center, Project Workout on Wheels

To me, a significant impact of the ADA is increased recognition of people with disabilities as a legitimate minority group in U.S. society, one that has experienced segregation and discrimination. My realization of the impact hit me when we worked to pass the bill.

First we kept discrimination diaries—thousands of them-- and sent them to our legislators. Then we traveled to Washington to lobby for the ADA when it was in committee. People came by bus in groups from many different states, including New York, where I was living. I recall seeing people from all over the nation, with all sorts of disabilities—those in wheelchairs, with white canes, with crutches, with guide dogs, using sign language—moving about the legislative office buildings. I don’t think the staff working there had ever seen anything like it. Many of them stood in the doorways of the offices, looking at all of us in amazement, like they had never seen so many people with disabilities there before (they probably hadn’t!).

We visited my congressional representative’s office. The furniture was arranged so that people in wheelchairs could not even enter the waiting area—the staff had to scurry around and move furniture so that we could enter. They had to find a sign language interpreter—already the ADA was changing their behavior!

I recall Justin Dart, a beloved disability rights leader, and Major Owens, another representative from New York, welcoming us and holding a briefing session on where the legislation stood. Owens mentioned efforts to pass the civil rights bill that outlawed racial segregation in the sixties. I remember him, an African American, referring to the ADA as the next step in ensuring equal rights for all Americans. I think that’s when it really hit us that we were all making history—and that there was no going back. We had to get the bill passed—and we did! 


H.R. “Rud” Turnbull, III, L.L.B., J.D., Ll.M., and Ann Turnbull, Ed.D., parents of Jay Turnbull, Director and Co-Director, Beach Center on Disability

When President Clinton invited a small group of national leaders in disability advocacy to speak to him in celebration of the fifth anniversary of the enactment of ADA, in 1995, he included us. In our short statement, we said essentially this: "When Jay Turnbull was born 28 years ago, physicians at Johns Hopkins Hospital counseled us to institutionalize him.  We didn't.  We made him part of our home, our community, and eventually our workplace. Now, Mr. President, Attorney

General Reno, and Treasury Secretary Rubin, we want to tell you that, as an employee at the University of Kansas for over eight years, he is paying your salaries and making his own way in this world. With ADA and the support of the university's senior administrators, staff, and students, he is productive and contributing. That's what ADA intended, and that's what Jay is doing."  To which the President shot his fist into the air and exclaimed, "All right!" with applause from Jay's sisters Amy and Kate, Attorney General Reno, Secretary Rubin, and nearly 30 advocates gathered in the audience. This is a story about ADA, access, and accommodations, about achieving the law's policy of equal opportunity, independent living, full participation, and economic self-sufficiency. But, more, it is a story about the culture of the University of Kansas and particularly the culture-makers such as Dick Schiefelbusch, Ed Zamarripa, and Paul Diedrich at the Life Span Institute and the many staff and students whom Jay served faithfully for just over 20 years.


Glen White, Director, Research and Training Center on Independent Living

July 26, 1990, was a typical hot and sultry day in Washington, D.C., but it was a special day for me and my fellow Americans with disabilities for or on that day President George Herbert Walker Bush signed the Americans With Disabilities into Law. I was one of thousands of disability advocates, leaders and other supporters on the south lawn of the White House that day. President Bush made several remarks before he signed the ADA, one of which is still very memorable these 20 years later. In one of President Bush’s remarks, he compared the role that the ideals of democracy played during the fall of the Berlin wall to the ideals and enforcement of ADA to take a sledgehammer to the “shameful wall of exclusion” that had too often prevented Americans with disabilities from participating in the mainstream of our country’s economic, social and political life.

On the speaker’s platform with President Bush were Reverend Harold Wilke, Sandra Perrino, Justin Dart and Evan Kemp. Interpreting for the event was Lisa Gorove. In spite of the heat of the mid-day sun, the crowd was giddy with excitement at the thought that as people with disabilities, we too would have our civil rights protected by the rule of law. Such was not always the case in the past. This was evidenced by the thousands of discrimination diaries that were presented to Congress. These diaries, written by those with disabilities from every state and walk of life described how they were excluded from many of the day-to-day activities that most of us take for granted.

I’d like to share one of my own experiences of discrimination that changed my life pathway. Following high school, I entered a local community college to pursue my A.A. in business administration. Following completion of my associate’s degree, I transferred to another Midwestern University in 1970 to complete my bachelors’ in business degree. To my dismay, I found that the building where the business school was located was inaccessible and the business classes were taught on the 3rd floor. This building had no elevator, only stairs. Given this dilemma, I explored the campus and switched my major to psychology because the building that housed this department was accessible. Today, the thought of selecting or changing one’s major based on the building that had accessible ramps, classrooms and bathrooms would be unthinkable! But back in the day people with disabilities were being funneled into jobs, not based on their interests or talents, but on arbitrary categories that made sense to the rehabilitation counselors (e.g., a deaf person placed working on a noisy printing press, or a paraplegic being placed as a radio dispatcher).

Yes, July 26, 1990, was a day I will never forget.  My memories of being at the White House for this historic event will never dim. Over the years since, I have heard many people say that they helped write the ADA! I figure if one could line them all up end to end, we could go the moon and back again!

The news commentator, Paul Harvey, in his newscasts usually had a segment called “the rest of the story” at the end of his radio programs. I also have a “rest of the story” regarding my ADA experience. In the late 1980s I did an internship with the National Institute on Disability and Rehabilitation Research (NIDRR). Dr. David Gray was the NIDRR Director at the time and I worked under the position of “guest worker.” I was assigned to Bob Funk, who was a project officer at NIDRR at the time. Bob later worked as the Chief Operations Officer for Evan Kemp, who was the Chief Executive Officer of the Equal Employment Opportunity Commission. Evan was on the platform to the right of President Bush for the signing of the ADA. About 3 p.m. that same day I was invited by Bob Funk to come to Evan Kemp’s EEOC office to celebrate the ADA signing. A small group of about 8-10 people attended the celebration. The one thing I remember at that event was seeing and holding one of the ink pens that President Bush used to sign the ADA into Law, which was given to Evan Kemp. 

Children's Campus opens its doors

Photo by David McKinney, University Relations

The Children's Campus of Kansas City (CCKC) and the Educare of Kansas City held its grand opening on June 8, an event attended by some 400 community members, well-wishers and representatives from public and private supporters. The three-story facility is now home to LSI's Juniper Gardens Children's Project.

The $15.5 million, three-story, 72,000-square-foot building at 444 Minnesota Ave., Kansas City, Kan, will serve as a new collaborative national model for education, service and research. The CCKC will support the educational success, health and wellbeing of more than 1,000 children and families annually in Kansas City, Kan.

LSI Director John Colombo said that the Children's Campus will be a tremendous asset to the translational research mission of Juniper Gardens and LSI in the Kansas City area. "In addition to providing a functional and pleasant workspace for the Juniper Gardens research and support staff, the Children's Campus puts scientists in proximity to service providers and advocacy groups," he said. "The collaborations that will result from this will improve both our research and the services received by the residents of Kansas City."

Watch a slideshow of the grand opening.

Project trains early childhood educators

Kathleen Baggett

Kathleen Baggett,
credit: DIane Guthrie

The Lawrence Journal-World featured a story April 19 on work by LSI investigator Kathleen Baggett that will use a $1.4 million federal grant to train child-care educators to promote the social and emotional development of infants.

Funded by the U.S. Department of Education, the three-year grant will address what decades of research have shown: infants whose social-emotional needs are unmet are less likely to be ready for school and more likely to have social-emotional problems throughout the life span. The story also discussed the advantage to child-care centers in participating in real-time training and research.

The project was also reported in the May issue of the AUCDigest, the electronic newsletter published by the Association of University Centers on Disabilities.

Mayo receives highest Peruvian humanitarian award

Liliana Mayo (left) receives the national Peruvian
Defensoria del Pueblo award from National Ombudswoman
Beatriz Merino (right) along with former United Nations
Secretary General Javier Pérez de Cuéllar
(in background )

Liliana Mayo, founder and director of the Centro Ann Sullivan del Peru, Life Span's Peruvian affiliate, was named a Defensoria del Puebo. Mayo, internationally known for changing the way children with autism and other intellectual disabilities were treated and educated in Peru, was recognized along with no less than former United Nations Secretary General Javiar Pérez de Cuellar. Perez de Cuellar, who recently toured CASP, now refers to Mayo as his "twin" according to Stephen Schroeder, retired LSI director and professor emeritus. Mayo was also recently featured as the cover story on KU Alumni Magazine.

Donnelly research cited in obesity epidemic stories

Weight-loss research conducted by Joseph Donnelly, director of LSI's Center for Physical Activity and Weight Management, was featured in a June 25 post on the Lawrence Journal World's health blog, WellCommons. The Kansas City Star also quoted Donnelly in a June 29 story on the increasing rate of obesity across the country, which followed in the wake of new statistics showing that residents of the Sunflower and Show-Me states are among the nation's heaviest.

Work Group thinks – and rewards – outside the box

The Community Tool Box, part of the Work Group on Community Health and Development, is sponsoring an international competition, an Out-of-the-Box Prize, to spur innovative community health and development initiatives. Eligible projects include activities to improve community health, education, urban or rural development, poverty, the environment, social justice or other related issues of importance to communities.

Grand prize is $5,000 in cash, which comes with a WorkStation, a customized online platform that includes an interactive website. Second prize is $2,000 in cash, also accompanied by a WorkStation.

Applications are due August 1- October 31, 2010. To learn more and download an application, visit the competition site.

Posters sought for RTCIL conference

In preparation for its upcoming state-of-the-science conference, the Research and Training Center on Independent Living is seeking poster presentations by disability community members, practitioners, researchers and students.

The conference, Community Participation by People with Disabilities, will be held Oct. 28-29 in Overland Park, Kan. It will bring together researchers, policy makers, service providers and consumers to explore the latest findings in the areas of independent living, rehabilitation, health care, measurement process and outcomes, participation and access for people with disabilities (physical accessibility, access to services), advocacy administration and related topics.

The second day of the conference focuses on practical applications and will feature 20 poster presentations on independent living, health care, best practices for centers for independent living, advocacy and other topics related to full community participation by people with disabilities.

Submission deadline is September 3. See the conference site for more information.