1. 1 The Family Outcomes Survey: Revisions, Data, Uses Don Bailey, RTI International Robin Nelson, Texas Part C Program Nyle Robinson, Illinois Part C Program Chelsea Guillen, Illinois Part C Program Melissa Raspa, RTI International Measuring Child and Family Outcomes National TA Meeting Baltimore, MD August 26, 2007

2. Goals for today Remind everyone of the goals and format of the Family Outcomes Survey Describe the revisions made to the survey this year and the rationale Summarize selected data from an initial pilot study using the scale in Illinois and Texas Describe plans to validate the scale Discuss ways the scale could be used to help states answer questions of interest

3. ECO Family Outcomes Understand their child’s strengths, abilities, and special needs Know their rights and advocate effectively for their children Help their children develop and learn Have support systems Access desired services, programs, activities in their community

4. ECO Scale: Family Outcomes Survey Three items for each of the five proposed family outcomes Each item rated on a scale from 1-7 Descriptive statements for ratings of 1, 3, 5, 7 Blanks left for “in between” ratings of 2, 4, 6 Three additional items for states to use in responding to APR requirements (two versions, one for Part C, one for Part B)

5. UNDERSTANDING YOUR CHILD'S STRENGTHS, ABILITIES, AND SPECIAL NEEDS 1.Your child is growing and learning. How much does your family understand about your child’s development? 1 234567 We are just beginning to understand our child's development We understand some about our child's development We understand a good amount about our child's development We understand a great deal about our child's development 2. Some children have special health needs, a disability, or are delayed in their development. These are often referred to as “special needs.” How familiar is your family with your child's special needs? 1 234567 We are just beginning to understand our child’s special needs We understand some about our child’s special needs We understand a good amount about our child’s special needs We understand a great deal about our child’s special needs 3. Professionals who work with you and your child want to know if the things they do are working. How often is your family able to tell if your child is making progress? 1 234567 We seldom can tell if our child is making progress We sometimes can tell if our child is making progress We usually can tell if our child is making progress We almost always can tell if our child is making progress

6. THE HELPFULNESS OF EARLY INTERVENTION The next questions ask how well early intervention has helped your family. When answering, think about the early intervention services you have received. 16.To what extent has early intervention helped your family know and understand your rights? 1234567 Early intervention has done a poor job of helping us know our rights Early intervention has done a fair job of helping us know our rights Early intervention has done a good job of helping us know our rights Early intervention has done an excellent job of helping us know our rights 17.To what extent has early intervention helped your family effectively communicate your child’s needs? 1234567 Early intervention has done a poor job of helping us communicate our child’s needs Early intervention has done a fair job of helping us communicate our child’s needs Early intervention has done a good job of helping us communicate our child’s needs Early intervention has done an excellent job of helping us communicate our child’s needs 18.To what extent has early intervention helped your family be able to help your child develop and learn? 1234567 Early intervention has done a poor job of helping us help our child develop and learn Early intervention has done a fair job of helping us help our child develop and learn Early intervention has done a good job of helping us help our child develop and learn Early intervention has done an excellent job of helping us help our child develop and learn

7. What have we done in the past year? States have begun to use the instrument Conducted a pilot study in Illinois and Texas (summer, 2006) Reviewed and revised the scale (fall, 2006) Submitted application to IES to validate the scale (summer, 2007) Completed cognitive testing of scale with Spanish speaking families (summer, 2007) Currently conducting a second, larger pilot study in Illinois and Texas (summer, 2007)

8. Questions Addressed in Pilot Study How should the survey be distributed and what response rates might be expected? What distribution of responses is seen for each item? Are respondents more likely to pick the odd numbered items? How did responses on the APR items compare with the outcome items? Did patterns of responses differ across the states? Did ratings of outcomes vary as a function of language of the survey (English vs. Spanish?) What is the internal reliability of the instrument?

9. Methodological Similarities Identical survey Similar accompanying materials Distribution method almost identical Identical return mail methods Timeframe was almost the same

10. Differences in Approach Texas used sampling Illinois surveyed all programs statewide Illinois found that IFSPs near 3 were often extended, new meetings not held So, Illinois did not distribute surveys within 3 months of age 3 during the pilot Texas did more follow-up, utilized replacement, Illinois depended on volume

11. Sampling, Distribution, Return Rates Illinois Did not sample Distributed 1,976 surveys at 6-month and/or annual reviews Texas Stratified programs by region and size Randomly selected 3 programs from 7 regions Randomly selected 1262 families Return rates Texas – 44%, representative Illinois – 29%, not as representative Data presented today represent 890 surveys (~100 Spanish)

12. Additional Construct: Looking Towards the Future Both states added three additional items to the survey to assess: Current life situation Transition preparation Future life situation

13. Understanding Your Child’s Strengths, Abilities & Special Needs

16. Knowing Your Rights & Advocating For Your Child

19. Helping Your Child Develop & Learn

22. Having Support Systems

25. Accessing Your Community

28. Findings on Range of Responses The items generated a range of responses We are not getting a normal distribution at the item level, but what kind of distribution would you expect? Ratings vary across items, suggesting that parents respond differentially and specifically to each item 77% of responses used the odd-numbered ratings (the ones with descriptors)

29. Knowing and Understanding Rights

31. Helping your Child Develop and Learn

33. Summary Comments and Analyses of APR and Outcome Items The two sets of items do not generate equivalent response patterns APR items more likely to have ratings of 6 and 7 Correlations are moderate.58 knowing rights.44 helping child develop and learn.26 communicate needs

34. Other Findings IL & TX had almost identical mean scores across items, although patterns across some items differed Same highest (EI help child dev & learn) and lowest (participation in activities) rated items High internal consistency for total scale and OSEP items (Cronbach’s alpha >.90) Factor analysis yields 1-2 factors Means for Spanish-speakers considerably lower than English-speakers on most items

35. Specific Question Comparisons IL slightly higher on “access to medical care” Better, more inclusive Medicaid system TX slightly higher on “knowledge of rights” Both states have strong emphasis; does service model make a difference? IL lower on “transition preparation” Already aware of the problem, IL has put considerable emphasis on improving transition

36. Example: Effects of Primary Language (English vs. Spanish)

38. Value of Comparisons Does service model make a difference? Texas SC has more contact with family Did Illinois exclusion of kids nearest exit have an impact? Families were receiving services longer Effect of demographics? Culture, acculturation

39. Demographic Comparisons Illinois 55% White 24% Hispanic 17% Black 3% Asian 13% primary language Spanish 60% Medicaid Texas 38% White 47% Hispanic 12% Black 2% Asian 19% primary language Spanish 61% Medicaid

40. Scale Revision Systematic review by survey methodologists Cognitive testing with 12 parents

41. Results from Scale Analysis Problems identified with unclear meanings and inconsistencies across items MUCH back and forth between methodologists and IL/TX folks about specific wording, resulting in significant revision (rewording only, same format and # items Revised instrument now available on ECO web site

42. Consistent Set of Descriptors Used at Each Level 7Great deal, almost always, very, almost all, excellent 5Usually, good amount, generally, many, good 3Some, sometimes, somewhat, fair 1Just beginning, seldom, few, poor

43. Changes in APR Item Modifiers Old Version 1 - EI has not helped… 3 - EI has done a few things… 5 - EI has provided good help… 7 – EI has provided excellent help… Current Version 1 – EI has done a poor job… 3 – EI has done a fair job 5 – EI has done a good job 7 - EI has done an excellent job

44. IES Application: Validating the Family Outcomes Survey Specific Aim 1: Determine the test-retest reliability of the FOS by examining stability of scores over a short (two-week) period of time. Specific Aim 2: Establish the criterion validity of scores on the FOS by examining its relationship with six well-established criterion measures of family well being, addressing family empowerment, social support, parenting self-efficacy, quality of life, hope, and parenting stress. Specific Aim 3: Determine sensitivity to change in scores on the FOS by comparing changes in family outcomes over 18-months to changes in scores on the six criterion measures. Specific Aim 4: Document the convergent validity of scores on the FOS by examining the relationship between changes in family outcomes over 18 months and the extent to which early intervention programs used recommended practices in providing services to families.

45. Using the Family Outcomes Survey: What are the possibilities? Using the scale to describe and classify outcomes attained by families Using the scale to identify child, family, or program variables associated with outcome attainment Using the scale to improve programs at the state or local level Using the scale to work with individual families

46. Data Uses How can states use the data from the Family Outcomes Survey to help identify both the “success stories” of early intervention and the families who may need more immediate help? How do states track the progress of families in early intervention? How can states examine the relationship between the quality and delivery of services and family outcomes? Are family outcomes related to child outcomes?

47. Data Uses Three areas of analysis Measurement-related analyses Internal consistency Factor structure Descriptive analyses Basic descriptive statistics Grouping families Predictive analyses Describing variation between families Predicting variation between families

48. Measurement-Related Analyses Internal consistency Total scale Five subscales Factor Structure One factor Multiple factors

49. Descriptive Analyses Basic descriptive statistics Mean, min, max, standard deviation Threshold scores 5 or higher = outcome attained 3 or lower = “score of concern” Score variation Most variable respondent Least variable respondent

50. Descriptive Analyses Grouping families with similar response patterns Empirically derived Success stories (scores of 5 or higher) Borderline (scores consistently 3 to 5) Immediate concern (scores 3 or below) Statistically derived Clusters of families with similar response patterns

51. Predictive Analyses Two types of analyses: describing variation and predicting variation Three types of “predictor variables” Child and family variables (e.g., health status, eligibility, ethnicity, income, mother’s education) Service quality variables (e.g., family- centered practices) Service delivery or models (e.g., service coordination model, amount of services, location of services)

52. Predictive Analyses Describing variation between families Do outcomes vary by child and family characteristics? Does the quality of early intervention services relate to family outcomes? Are service delivery models associated with family outcomes?

53. Predictive Analyses Predicting variation between families Do families of children who just entered early intervention have lower family outcomes than families whose children have been receiving services for a longer period of time? Is a dedicated and not independent service coordination model associated with better family outcomes?

54. Family Outcomes vs. Child Outcomes

55. Discussion