Parental Satisfaction: Indicator for servicing of young children with autism?

1. Parental Satisfaction: Indicator for servicing of young children with autism? Dr. Cory Shulman The Hebrew University of Jerusalem International Society for Child Indicators- Inaugural Conference

2. Indicators of Child Well-Being • Indicators of child well-being: • Method for assessing the impact of welfare reform. • Evaluating the effect of social policy on children and their families. • Used by federal, state and local governments. • Used by nonprofit organizations.

3. Indicators of Child Well-Being • Indicators of child well-being: • Assess health status • Assess cognitive functioning • Assess social and emotional status • Assess educational opportunity • Assess economic and food security • Assess family/neighborhood environments

4. Indicators of Child Well-Being • Statistical indicators are useful: • Describing demographic information • Delineating important characteristics • Monitoring the impact of programs • Holding agencies accountable for: a. progress towards objectives b. attaining identified program outcomes c. establishing and tracking indicators can be used as outcome measures.

5. Indicators of Child Well-Being – for special needs • Diagnosis • Initial intervention and treatment • Educational services • Formal support • Informal support (Shulman, 2000)

6. Stress reduction for parents • Families of children with a disability experience stress. • Factors have been identified which mediate stress: 1. social support 2. spousal support 3. family support (e.g. grandparents) (Johnston, 2003; Snowdon, 1994; Trute, 2003; White & Hastings, 2004)

7. Stress reduction for parents • Factors have been identified which mediate stress: 4. informal support including a. neighbors b. volunteers c. religious groups (Trivette and Dunst, 1992)

8. Statutory services in stress reduction • Studied less and results less clear. • Families do not always receive useful support from statutory services. • Families report that servicing is not necessarily “tuned” to their needs or to the needs of their child. (Florian & Krulik, 1991; Sloper & Turner, 1992)

9. Statutory services in stress reduction Parents expect help and support from the service providers. Parents consider professional support important. Specific help and support have been identified by “listening” to the voices of the parents of special needs children.

10. Professional support • Providing information • Training parents • Employing problem solving strategies • Relieving some of the daily demands • Linkage among families • Linkage between families • Linkage of families to services (Taanila,2002)

11. Indicators • Professional support can contribute if it is appropriate. • Therefore, it is of the utmost importance to tune professional support to the needs of the families of a child with a disability.

12. Indicators • First step: • Evaluation of service users (families of children with special needs) • Exploration of their needs. Their views can be used to inform policymakers and professionals toward better services and support systems.

13. Indicators • Measurement: • Significance of parental satisfaction as an indicator for the effectiveness of intervention programs. • Use of parental satisfaction as an outcome measure in intervention studies. (Boyd & Corley, 2001; Hancock & Kaiser, 2002; Mesibov, 1997)

14. Indicators-Present study • Previous studies focused on evaluation of particular interventions. • Purposes of present study is Evaluate parental satisfaction in general regarding: • accessibility of services • quality of services • support provided by services.

15. Population • Parents of children with autism spectrum disorder (ASD). • Autism spectrum disorders include: • Autism • Asperger syndrome • Rett syndrome • Childhood disintegrative disorder • Pervasive developmental disorder- Not otherwise specified.

16. Autism (DSM-IV: APA, 1994) • Impairment in social interaction (at least two of the following: • Impairment in the use of nonverbal behaviors (eye contact, posturing). • Developmentally inappropriate peer relationships. • Failure in shared enjoyment. • Poor social/emotional reciprocity.

17. Autism (DSM-IV: APA, 1994) • Impairment in communication (at least one of the following: • Delay in development of speech. • Significant difficulty in initiating and/or maintaining conversations. • Idiosyncratic or stereotyped language usage. • Lack of social imitation or make believe play appropriate to developmental level.

18. Autism (DSM-IV: APA, 1994) • Repetitive, restricted, stereotyped interests, activities and behaviors (at least one of the following): • Preoccupied with restricted interests (abnormal in focus or intensity). • Inflexible adherence to nonfunctional routines or rituals. • Repetitive motor movements. • Persistent preoccupation with parts.

19. Nature of ASD • Need for structure • Clearness • Continuity • Predictability Research indicates that ASD-specific interventions show best outcomes. (Panerai, 2002)

20. Nature of ASD • Appropriate intervention requires: • Specialist knowledge • Special training • Distribution of resources (Renty & Roeyers, 2005; Sperry, 1999)

21. Shortcomings: • Early identification • Information about available service provision • Specialist knowledge about ASD • Availability of appropriate support.

22. Early identification • Time which elapsed until firm ASD diagnosis was established was considerable. • Effort spent getting the diagnosis was exhausting. • Professionals did not use established diagnostic protocols. (Shulman, 2000; Young, 2003)

23. Early identification • Parents report concern when their children are around 18 months old. • Seek professional help when their children are around 2 years old. • Average age of diagnosis is still reported as 3 ½ to 5 years of age. • Symptoms are now being recognized in infancy. • Prospective studies of at-risk siblings.

24. Early identification • Professionals often respond to parental concerns dismissively. • Brogan and Knussen (2003) demonstrated that the length of time parents had to wait until receiving a final diagnosis was related to parental satisfaction with the diagnostic process.

25. Early identification • Other factors related to parental satisfaction: • Age of diagnosis • Quality of information during disclosure • Clarity or certainty of diagnosis. (Howlin & Moore, 1997; Mandell, 2002, NIASA, 2003)

26. What we know … • Research claims that parents should be given direct support in the early years, concomitant with diagnosis. • Development of appropriate skills and strategies which have been shown to affect quality of life of the child. (Howlin, 1997)

27. What we know … • Parents are uninformed about service provisions and how to access them: • Education • Social services • Leisure services • Health services (Nesbitt, 2000; Whitaker, 2002)

28. What we know … • Parents of preschooler with autism expressed a need for more information about service options. • National Plan for Autism in Children recommend: families with children with ASD should have a key worker who supports the family. (NIASA, 2003)

29. What we know … • Knowledge of the features of ASD has been found to be crucial in establishing and maintaining good practice. • The quality of life of an individual with ASD may largely depend on the manner in which we adapt the environment and our expectations.

30. Present study • Israeli diagnostic system • Israeli educational system • Israeli system of non-profit organizations • Israeli system of financial support

31. Present study • Participants (all parents of preschoolers with ASD): The sample was drawn from three sources: • Advertisement in the journal of ALUT (Israel Autism Society). • Participants in other research projects were asked if they would take part. • Invitations left at the Support Center for families with children with ASD.

32. Present study • Measures: • Interview based on Randall and Parker (1998) questionnaire. • Demographic information about children and parents. • Family characteristics.

33. Present study • Interview included: • Information about diagnosis • Information about educational servicing. • Information about supplementary/ additional servicing. • Information about accessibility of ASD specific services. • Information about received support.

34. Present study • Parents were requested to describe the service and then rate their satisfaction from the service and the professional who provided the service. If there was a discrepancy the parents were asked to explain. • Parents were also asked to rate autism specificity of the service.

35. Present study • Results and Conclusions: Diagnostic Process: Three groups emerged-children first diagnosed (1) under the age of three; (2) age three or four; (3) at the age of 5 or above.

36. Results and Conclusions:Diagnosis

37. Results and Conclusions:Diagnosis

38. Results and Conclusions:Diagnosis

39. Results and Conclusions:Diagnosis • The relationship between diagnostic process, and the age of first consultation, number of consultations before diagnosis was obtained, age of diagnosis, amount of information received and perceived professionalism in the area of ASD was analyzed.

40. Results and Conclusions:Diagnosis • Overall, higher rates of satisfaction were related to ,lower age of diagnosis, more information and perceived specificity of professionalism in the area of ASD. • Furthermore, the higher the age at diagnosis, the higher the number of consultations before obtaining diagnosis.

41. Results and Conclusions:Diagnosis • The younger the child was the more specific the intervention was (p<.05), which was surprising as school servicing begins at age three in Israel. • Satisfaction with the intervention chosen was significantly correlated with the specificity regarding ASD (p<001).

42. Results and Conclusions:Diagnosis • More than half of the parents reported that their child received autism-specific support from one or more service providers (e.g. home-based treatment) • Of those who were in a non ASD-specific program, higher degrees of satisfaction were reported from integration programs.

43. Results and Conclusions • Satisfaction with support and education depended on: • Communication between the program and the parents, specifically about daily functioning. a. notebook b. evening meetings c. short chats

44. Results and Conclusions • Satisfaction with support and education depended on: • The information exchange must be reciprocal. • It is important because it is difficult fr the child with ASD to report. • Communication is seen as the base for cooperation and continuity.

45. Results and Conclusions • The information exchange must be reciprocal. • Professionals must listen to the parents. • They must take the parents seriously as partners. • This is the base for parental involvement-thinking and working together for the child’s benefit.

46. Results and Conclusions • Parental perceptions of the professional: • Level of commitment • Level of enthusiasm • Level of motivation • Continuity of staffing • Professional knowledge of ASD

47. Results and Conclusions • Parental perceptions of the professional: 6. Viewing the child as an individual and getting to know him/her as such. 7. Individualizing the activities is also important. 8. Creating an Individualized Educational Program was seen as a professional necessity.

48. Results and Conclusions ASD-specific knowledge and training • Sharing knowledge about ASD. • Sharing knowledge about intervention options. • Continuing education and knowing up-to-date information and research findings.

49. Thoughts about child indicators: Assuming that parents who receive support report a higher degree of satisfaction about the servicing their children receive and are more involved in making decisions which affect their child, an aim of this research was to identify child indicators affecting the well-being of both the child with ASD and his parents.

50. Thoughts about child indicators: Early diagnosis is problematic, according to parental report:1. relatively late age of diagnosis Parental satisfaction is related to age of diagnosis. 2. delay in receiving the diagnosis On the average there was a delay of more than one year between the first consultation and the receipt of diagnosis.