1	Illinois-Texas EI Families Statewide Outcomes Survey Nyle Robinson, Ill. Part C Data Manager Robin Nelson, Texas Part C Data Manager Mary Ellen Simpson, CDC Epidemiologist
2	Illinois and Texas? How? Why? Illinois and Texas both wanted to move forward on outcome measurement Both felt direct child measurement presented too many short-term challenges Both felt family outcome measurement was a viable, short-term alternative Both felt NEILS provided a valid starting point for family outcome measurement
3	Illinois and Texas? How? Why? Illinois started with the idea of a simple, modest survey Illinois used the Part C Data Manger listserv to ask other states for ideas on family outcomes surveys and noted interest in NEILS as a starting point Texas responded that they were thinking about the same thing, starting w/NEILS
4	Illinois and Texas? How? Why? Agreed to work together to share the work & build a tool jointly Began meeting periodically to push the project forward & share the effort Brought in Illinois’ CDC assigned MCH Epidemiologist to help improve reliability & validity into the tool Began applying for grants together
5	Illinois and Texas? How? Why? Sharing the work & setting new dates for conference calls helped keep us on-track, despite constant conflicts in both states Both states have noted the project in their APRs as part of their efforts at outcome measurement Lack of time to dedicate has always been our major problem
6	Illinois and Texas? How? Why? Illinois applied for & received funding for an Intern but in the end nobody took the job (Maybe if it was in Austin?) When GSEG $ was offered Illinois decided to lead a joint application, since the collaboration was being so useful Uniqueness of collaboration probably did not hurt, only completely family project
7	Rationale for Looking at Family Outcomes Intent of Federal legislation Role of family in child’s development Challenges faced by families of children with disabilities Complementary outcomes for some sub-groups of children and families
8	Goals of the GSEG? Development of a Statewide Outcomes Survey (EI SOS) of families with children in Early Intervention Test for validity and reliability Final product useable by both states, other states, EI programs on a ongoing basis Both states to incorporate into client data systems: TKIDS & Cornerstone
9	Conceptual Frameworks Bailey et al.(1998) à NEILS Early Childhood Research Institute (1998) OSEP (2003) outcomes and indicators focus group Head Start (1998)
10	Goals of the GSEG Goal to develop family outcomes: Self-efficacy, confidence in parenting skills, positive view of future Improved quality of life Knowledge of child’s abilities & development Involvement as equal partner in decisions about child, ability to advocate for child Increased family problem-solving & adequate support networks
11	Goals of the GSEG ECO Center proposed family outcomes: Understand their children’s strengths, abilities & special needs Know their rights & effectively communicate their children’s needs Help their children develop & learn Feel they have adequate social support Are able to access services & activities that are available to all families in their communities
12	Challenges What family outcomes to measure? What is a family? Racial, ethnic and cultural considerations Common vs. individualized outcomes Family outcomes vs. satisfaction
13	Measurement Decisions Source of data (who is respondent) Whose outcome is being reported Format of items Mechanism to collect data Response format
14	Measurement Decisions continued Evidence statements Status Progress Measurement points When /timing How many
15	Phase I: Question development & revision Identify family outcomes constructs Track one ECO Center Developing track two Formulate evidence statements to evaluate effectiveness Develop indicators of outcome
16	Phase I: Development of questionnaire Include transition experience Demographic data
17	Phase II: Pilot testing & Scale revision Pilot test with small sample families that recently exited EI (n=60) English & Spanish versions Revisions & preparations for field-testing
18	Phase III: Field testing & scale revision Random sample each state Preletter inviting participation Mail questionnaire & scantron sheet Tickler follow-up: second & third packets Small incentive for participation
19	Phase IV: Implementation of survey Validate survey in other languages Validated version of EI SOS will be incorporated into Cornerstone & TKIDS Link database & assessment with an identification number HIPAA compliance/confidentiality Cross link analysis for non-responders Collection decision: Sampling? All exits?
20	Resources & Structure Each state will have a Project Coordinator, other than the State Project Managers Each state will have an “Expert” advisory group representing various interests The Advisory Groups will meet jointly, probably by video conference, to help guide the project as a whole Each will also use family focus groups
21	Resources & Structure The survey will use scantron sheets which will be marked with the EI SOS # The response sheets will include a place for written responses which also will be analyzed Dr. Don Bailey, University of North Carolina, FPG Child Development Institute, will serve as the ECO contact