Welcome to the Beach Center e-newsletter. This on-line newsletter is designed to let you know about new content on the Beach Center website and to provide links for you to view or download research articles, Power Point presentations, feature stories, and more. Whether you're a family member of a person with a disability, a researcher in developmental disabilities, a practitioner, a policy leader, a student, or a general-interest web surfer, we hope you'll find our website a useful source of information and inspiration. Welcome...and let us know what you think. Leave feedback here.
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In This Issue
||Back to top Conversations Expand With Thriving Community of Practice on Early Childhood Family Support
A Community of Practice (CoP) on Early Childhood Family Support, hosted by the Beach Center on Disability, has surpassed all expectations since it launched in June and is now engaging more than 200 participants from across the country.
The on-line CoP features passionate discussions of topics among parents, practitioners, and policy leaders, with family members posting questions or opinions, followed by several rounds of responses and suggestions. Recent discussion threads included the following:
- Accessible Preschools and Daycare ("I would like to have a discussion regarding the efforts families have put forth in trying to have their children included in regular daycares and preschools, and particularly what they were told were the obstacles which prevented daycare owners from welcoming their children.")
- The "R" Word: ("Our daughter, Emma, wrote a letter to all of her teachers asking them to confront students who use the "r" word in schools. It was well received, resulting in more teachers refusing to allow the use of this word in the classroom and hallways.")
- When Parents and Schools Disagree: What's Next?: ("I would love to know how everyone feels about mini-buses being the accepted mode of transportation for most children who have an IEP. I personally feel that we need a policy similar to LRE (Least Restrictive Environments) in which all children are presumed to be riding on the regular buses unless it can be proved that they need to have separate transportation. Our nation is way behind the times in this area. To me, this is a violation of civil rights.")
The CoP also includes a "Featured Person of the Month." The standout for September is Judy Swett, early childhood coordinator at the PACER Center, Bloomington, MN. In an audio interview available on the CoP, Swett encouraged others to join the CoP. "There aren't a lot of places where you get the connections between professionals, the researchers, and the families at one time. I think as more and more people join the community it's going to make the conversations that much richer."
If you haven't had a chance to visit and consider becoming a member of the CoP, just go to the main Beach Center home page and follow the link to "Communities of Practice." Once you're in the CoP, find the "Participate" menu (on the left side of your screen), choose "Become a Member," and the follow the instructions. Help is available via a full-time facilitator if you're not sure where to begin.
Whether you get started right away or just take a look for a few days, you're only a click away from joining a new, thriving community.
||Back to top What's New in Funding Trends? Participant Direction
A funding trend called "Participant Direction," also known as "Individual Control of Funding," is drawing increasing interest among families and policy leaders because it affords increased control over housing and employment during the critical transition-to-adulthood stage of life for young adults with disabilities.
Through Participant Direction, individuals with disabilities gain greater control over the services they receive that are funded through the Medicaid Home and Community-Based Service (HCBS) Waiver. Exercising control over services and funding usually includes developing a person-centered plan, developing a budget and spending plan, serving as the employer of record (recruiting, hiring, supervising and scheduling support staff), identifying and purchasing needed goods and services, and working with a support team which usually includes a case manager, support broker, fiscal intermediary, and family and friends.
The Beach Center website provides an overview of Participant Direction/Individual Control of Funding along with research articles, tips, and other resources. Beach Center researchers have recently presented on the topic at national conferences sponsored by APSE and the National Down Syndrome Congress.
View a Power Point presentation entitled The future is now! Funding sources and strategies for an inclusive life in the community. Picture above left is J.T. Turnbull, whose quality of life has been improved through Participant-Directed Funding.
||Back to top Analysis Available of Proposed Part C Regulations
Members of the policy team at the Beach Center recently guided an extensive analysis of proposed regulations for Part C (infants and toddlers) of IDEA 2004.
The Beach Center team organized an in-depth study of the proposed regulations by 14 stakeholders who had experience in early education as parents, professionals, or both. Participants used a computer-based tool to compare the current regulations with those that are proposed in the area of family issues.
The analysis used the Computer Assisted Policy Analysis tool (CAPAT), which was created by the Beach Center. The final report that summarizes the findings includes 12 recommendations from the group, a description of the methodology used, a list of the participants, and a table that reports the complete findings. Shown at left is one of the report's authors, Matt Stowe, assistant research professor.
If you want to know how these stakeholders believe the proposed regulations can be improved, check read the report now. The Beach Center will post a link on our website to the approved regulations when they are available.
||Back to top Harper's Story: When the Best Emerges from a Parent-Professional Partnership
For first- time parents who had a normal pregnancy and typical delivery, the news was a shock.
When their daughter, Harper was diagnosed with Down syndrome, Melissa and Jason quickly set the wheels in motion to locate resources, services, and support. From the beginning Harper received such services as occupational and physical therapy, and speech language therapy. They also received considerable support from their extended family. Their experience testifies to the importance of strong partnerships between families and practitioners when a child has a disability.
Included in this resource are specific tips from those involved on what worked with links to more information on Down syndrome. Read more about Harper in a storybook format, watch interviews with her parents, and download other resources related to this "success story."
Researchers Expand Connections in China||Back to top
Beach Center Co-Director Rud Turnbull, together with adjunct professor Mian Wang (Ph.D., 2003) and intern John Muller (Yale Law School), returned to China in July to strengthen connections forged in 2004 with Chinese educators and researchers in special education.
Turnbull lectured at an international education forum held in Beijing. He also taught seminars at Beijing Union University in Beijing, Chongqing Normal University in Chongqing, and East China Normal University in Shanghai. The trip was Turnbull's third in four years as part of a program of special education research and leadership development between China and the United States.
The Beach Center is currently sponsoring one visiting scholar and one doctoral student from China at both the Beach Center and Department of Special Education in the School of Education. Visiting scholar Xu Sheng (Windy) is a doctoral student in the Department of Special Education at East China Normal University and a staff member in Special Education at Chongqing Normal University. Doctoral student XiaoYi Hu (Kimberly) is interested in family quality of life and family support. Previously she was an English teacher for university students with deaf-blindness in the only higher educational institution for people with disabilities in China -- Special Education College of Beijing Union University in Beijing.
The third edition of Exceptional Lives, the leading introductory text to special education in the English-speaking world, is now available in Chinese through East China Normal University.
Bashinski Serves as Visiting Professor in South Africa||Back to top
Research Assistant Professor Susan M. Bashinksi served as a visiting professor at the University of Pretoria in South Africa during the summer of 2007. Her students in a class on Deaf-Blindness included parents, teachers, early childhood educators, and the province's Minister of Education.
Bashinski (shown at right) worked with the staff of the Center for Augmentative and Alternative Communication to share resources and provide staff training. She also visited a number of schools and consulted with educational teams about students who were suspected of having concurrent vision and hearing losses. She also completed informal assessments with some of the students who were identified.
Read more about her research projects on our website, which includes a study of outcomes for children who have deaf-blindness after they undergo cochlear implants.
Self-Determination Guide Available for Early Elementary-Age Students
A complete guide for parents to help prepare children for eventual self-determination is available free of charge on the Beach Center website. The self-determined learning model of instruction for early elementary-age students was first used with teachers to teach problem solving and goal setting. Parents also will find the guide helpful to support learning in school or to work on problems or goals in the home.
The guide was written by Susan Palmer, research associate professor, and Michael Wehmeyer, associate director of the Beach Center.
Download the guide.
About This Newsletter
The Beach Center on Disability is affiliated with the Life Span Institute and the Department of Special Education, University of Kansas. We receive support from the National Institute on Disability and Rehabilitation Research and the Office of Special Education Programs, U.S. Department of Education; and individual gifts to The Kansas University Endowment Association, especially gifts from Ross and Marianna Beach and their family, the family of Betsy Santelli and Sherleigh Pierson, and Professor Ron Borchardt and his family.