Early Childhood Family Support Community of Practice Fostering Wisdom-Based Action

1. Early Childhood Family Support Community of Practice Fostering Wisdom-Based Action Ann Turnbull – turnbull@ku.eduDonna Beauchamp – dbeau@ku.edu Beach Center on Disability1200 Sunnyside Avenue, 3111 Haworth Hall The University of KansasLawrence, KS 66045-7534785-864-7600 (phone) – 785-864-5825 (fax) www.beachcenter.org OSEP National Early Childhood Conference Arlington, VA December 1-5, 2007

2. Communities of Practice(CoP) • CoPs are groups of people who “share a concern, a set of problems, or a passion about a topic, and who deepen their knowledge and expertise . . .by interacting on an ongoing basis.” (Wenger, McDermott, & Snyder (2002, p. 4)

3. Critical Elements for Effective CoPs • Domain of knowledge • Community of people • Shared knowledge and practice the members are developing.

4. Early Childhood Family Support CoP

5. Wisdom-Based Action • Wisdom-based action involves integrating values, vision, and contextual factors (child/ family/system/community) with knowledge (experiential insight, research, and policy) to make and implement sound and balanced judgments in order to enhance quality of life.

9. General Statistics CoP Growth from October to November 30, 2007 • From 202 to 240 members • From 100 to 118 family members • From 122 to138 practitioners • From 40 to 43 researchers • From 16 to 20 policy Leaders • 39 states • 3 countries When counted by roles, such as family members, practitioners, etc. the total is more than 240 due to some members identified by more than one role.

10. Distribution of Members in the United States

11. CoP Traffic Data • Total of 1,355,116 hits by 10/25/2007 • Total of 2,445,926 hits by 11/30/2007 • Average of 5,622 hits per day by 10/25/2007 • Average of 7,864 hits per day by 11/30/2007 • Visitors average 14.08 page views as of 10/25/2007 • Visitors average 13.63 page views as of 11/30/2007 • Total of 347,768 page views as of 10/25/2007 • Total of 1,286,214 page views as of 11/30/2007 The CoP front page counts as about 10 hits due to the volume of content. The page views are every single view of individual pages.

13. Anatomy of a Discussion How Do You Know & Act on Your Rights? • 12 participants • 53 exchanges • 2 parents • 6 parent/professionals • 2 parent/researchers • 2 researchers

14. Vibrant Discussions Include a Story • …a community preschool that sounded ideal for Ben • He would have to ride the bus for an hour, starting at 6:45 a.m. • …my mother’s heart couldn’t let him get on that bus all by himself • I called the school district transportation department to let them know that Ben was not going to attend that preschool after all. • The director said…I could drive him…with mileage reimbursement…It was one of my son’s rights. • What good news for Ben and me! How Do You Know & Act on Your Rights? When my oldest son was very young, I didn’t even know that I needed rights, let alone know what those rights were.

15. Values • informal avenues – sharing “…one way to truly act on rights is to use the “friendliest way possible” first…” • “… websites, articles, trying to find common ground” • “…faith in the power of heart-to-heart finesse.” • “I have tried many methods, educating people about my child,…appealing to their sense of morality, preparing for crucial conversations…”

16. Vision • “…parents are not only given their rights, but…they come to fully understand them, and then…act on them once they understand them. • “…it’s important for families to remember they are a part of the team.” • “they acted upon their (healthcare) rights in a non-threatening way to have their questions heard so they could make an informed decision.

17. Child Factors • “…needing to advocate for an accessible bathroom in my daughter’s new high school.” • “…how do you provide ergonomically correct seating to a child with short stature who is at risk for scoliosis.”

18. Family Factors • “She was handed an IEP and asked to sign…My wife did not know she had the right to (give) input in the IEP goals.” • “…despite the fact that I provide trainings and help others…advocate, I have been having difficulty getting services in place for my son…” • “…what happens to families who might not be aware of their rights or have the time and energy to advocate on behalf of their children.”

19. Service System Factors • “Often campus administrators do not have the knowledge about rights and procedures.” • “I understand that sometimes I must travel the hierarchical ladder.” • “…parents’ rights simply handed to the parent…without any explanation” • “…the document must be written in language understandable to the general public.”

20. Knowledge-Experiential Insight • “What made it happen was looking in the eye of the school administrator and visualizing for HIM how he would FEEL…” • “I know that many Parent Training Information Centers (PTIs)…provide training to families on special education.” • “In something as complex as a school district, do not take the first no that you get as their final answer.” • “IEP meetings tend do get emotionally charged…I often brought a friend (or) relative…another set of ears, someone (to) take notes, and remind you…”

21. Knowledge-Experiential Insight “You were away, and most likely not available at the time of the meeting. But if a similar situation occurs, when you choose to hold a meeting when you, or another TEAM member can not be present, they can always join via speakerphone…or if you have laptop computers and download SKYPE (it’s free), its almost as good as having the person in the room…as you can see and hear each other. As for the IEP-as a parent, you have the right to change your mind…at ANY time. I’d recommend that you and your wife peruse the IEP and let the school know you’d like to make some changes. Basically, highlight the things you want to keep, and sign again…accepting the highlighted portions, rejecting the others.”

22. Gathering Wisdom Through Real Stories • Kris’ Story – a father in the U.S. military, a mother from the Vietnamese culture, and their son’s daunting diagnosis http://www.beachcenter.org/resource_library/real_story.aspx?intResourceID=2513&Type=story • Emma’s Story – decisions to be made after a prenatal screening indicates Down Syndrome http://www.beachcenter.org/resource_library/beach_resource_detail_page.aspx?intResourceID=1812 • Caleb’s Story – two first time lesbian mothers encounter the medical and other service systems http://www.beachcenter.org/resource_library/real_story.aspx?intResourceID=2463&Type=story

23. Knowledge – Policy • “…they (school staff) respond based on…an informal policy in their particular building that has no basis in law.” “I have seen parents of children with disabilities…get services from voc rehab, Medicaid, and other public entities by simply asking for documentation of a specific policy in writing.” • From IDEA 2004 “We do not encourage public agencies to prepare a draft IEP…particularly if doing so would inhibit a full discussion of the child’s needs.”

24. Knowledge – Research How Do You Know and Act on Your Rights? Research has addressed: • “The percent of parents who are involved in IEP (Individualized Education Plan) meetings, • work with their child on academic skills • participate in PTAs/leadership roles…” Research needs to address: • “the ways parents problem solve issues” • “the effective use of behavioral psychology (and) savvy social skills” • “a deeper understanding of what ‘works’”

25. Review Strategies Sheets

26. Become a Member! Enter the CoP at www.beachcenter.org The Beach Center on Disability at the University of Kansas Click on Communities of Practice. Select and click on Early Childhood Family Support. Once inside, you can read the discussions. To fully participate, click on Become a Member. Then, complete your Member Profile, and click Submit. When you receive your members confirmation email, sign in on the CoP to start exploring and sharing. For more information, please contact Donna Beauchamp 785-864-7601 dbeau@ku.edu George Gotto 785-864-7613 ggotto@ku.edu