1
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- Nyle Robinson, Ill. Part C Data Manager
- Robin Nelson, Texas Part C Data Manager
- Mary Ellen Simpson, CDC Epidemiologist
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2
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- 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
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3
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- 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
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4
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- 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
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5
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- 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
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6
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- 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
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7
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- 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
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8
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- 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
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9
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- Bailey et al.(1998) à NEILS
- Early Childhood Research Institute (1998)
- OSEP (2003) outcomes and indicators focus group
- Head Start (1998)
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10
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- 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
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11
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- 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
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12
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- What family outcomes to measure?
- What is a family?
- Racial, ethnic and cultural considerations
- Common vs. individualized outcomes
- Family outcomes vs. satisfaction
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13
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- Source of data (who is respondent)
- Whose outcome is being reported
- Format of items
- Mechanism to collect data
- Response format
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14
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- Evidence statements
- Measurement points
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15
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- Identify family outcomes constructs
- Track one ECO Center
- Developing track two
- Formulate evidence statements to evaluate effectiveness
- Develop indicators of outcome
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16
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- Development of questionnaire
- Include transition experience
- Demographic data
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17
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- Pilot test with small sample families that recently exited EI (n=60)
- English & Spanish versions
- Revisions & preparations for field-testing
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18
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- Random sample each state
- Preletter inviting participation
- Mail questionnaire & scantron sheet
- Tickler follow-up: second & third packets
- Small incentive for participation
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19
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- 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?
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20
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- 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
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21
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- 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
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