1. Services & TN’s Families of Children with ASD
Bob Hodapp, Maria Mello, Samantha Goldman & Rick Urbano

2. Today’s Talk = Introduction & Methods (short) Results Discussion
Overall
By age
By rural vs. non-rural
By grand region of state
Discussion
What we found & what we recommend

3. Project Itself Tennessee’s ACT Early Team
to “…improve access to comprehensive, coordinated health care and related services” for children-youth with disorder (ASD).
Part of job to perform “resource mapping”
Decided (in 12-11) to perform web-based statewide survey

4. Timeline of Survey Meetings to: IRB approval (late March, 2012)
Decide on performing survey (12-11 & 1-12)
Agree on survey questions (2-12)
IRB approval (late March, 2012)
Uploading survey into RedCap & Testing survey (Rick, Maria)
Translation into Spanish (Maria & Pathfinder)
Making flyers (English-Spanish--Kylie)

5. Timeline--Recruitment
Six community conversations re: service needs promoted survey
Cory Bradfield—coordinator, & John Shouse—facilitator/MC
Maria’s s-calls (5-12 to 11-12) to…
538 agencies-organizations
East = 188; West = 137; Middle = 197
Appearance on Nashville Spanish-language radio—July, 2012

6. Final Flyer

7. Participants per Week

8. Current

9. Current Status N = 421 (with complete data) 65 of state’s 95 counties
East: 23.0%; 24 of 34 counties
Middle: 62.1%; 26 of 40 counties
West: 14.9%; 15 of 21 counties

10. Participant Characteristics
Mothers 84.5%; Fathers 9.7%; Other 4.8%
White = 83.6%; Af-Am = 8.6% (36); Hispanic = 5.9% (25)
Ed levels:
Less than HS or HS grad = 14.7%
Some college = %
BA/BS = %
Professional degree = 28.2%

11. Results: Organization
Major Categories:
I-Overall (for entire sample)
II-Age-Groups (0-4; 5-13; 14 & up)
III-Rural vs. Non-Rural & TN Grand Division
Within Each Category
(a) Co-occurring Problems
(b) Diagnostic Issues
(c) Services received, needed, coordinated

12. (a) Co-Occurring Conditions: % w/ Moderate-Severe Behavior Issues

13. (a) Co-Occurring Conditions

14. (b) Diagnostic Issues

15. (b) Diagnosis: Type of Concern

16. (b) Diagnosis: # of Pros Consulted

17. (c) Frequently Received Services

18. (c) Least Frequently Received Services

19. (c) Recommended Services
Home
School

20. (c) Services NOT Implemented
School
Home

21. (c) Recommended Medical Services

22. (c) Medical Services NOT Implemented

23. (c) Recommended Parent Services

24. (c) Parent Services NOT Implemented

25. ( c) Recommended Service “Not Available in Area”

26. (c) Recommended Service “Not offered by school”

27. (c) Service Coordination

28. Results by age group

29. (a) Co-occurring Issues

30. (b) Age of Diagnosis

31. (c) Services Received

32. (c) Recommended Services
School
Home

33. (c) Services NOT Implemented
School
Home

34. (c) Recommended Medical Services

35. (c) Services NOT Implemented

36. (c) Parent Services
Recommended
NOT Implemented

37. Results by rural/non-rural

38. (a) Co-occurring Issues

39. (b) Diagnosis- Age of 1st Discussing Concern with a Professional

40. (b) Age of Diagnosis

41. (c) Services NOT Implemented

42. Results by region

43. (c) Services NOT Implemented

44. Five Recommendations Acknowledgment that many are possible
But five seem most justifiable from these findings

45. Recommendation #1 Increase Professional Training Why? What exactly?
Lag between parent concern-consultations and ultimate ASD diagnosis
Going to too many professionals before diagnosis
What exactly?
Screening (like MD-STAT), for many disciplines
Better referral information (WHO gets called?)

46. Recommendation #2 Increase-Target Services for Older Children Why?
Many problems increase (mainly anxiety-depression, ADD, other MH concerns)
Many children with these problems not receiving counseling/MH care
What exactly?
Identification of MH professionals who serve (are good at serving?) children-adolescents w/ASD

47. Recommendation #3 Increase Specific Types of Services Why?
Although all services should to be increased, several seemed especially problematic
What exactly?
ABA-behavioral supports (school & community)
Parent-related supports (P groups, workshops)
Specific health (DAN doctors, genetic & sleep evaluations)

48. Recommendation #4 Increase Attention to Rural Areas Why? What exactly?
Rural > Non-rural for
Some co-occurring conditions
Higher percentages who cannot access ABA, parent, and special medical services
What exactly?
Given relatively short distances (& good highway system), is issue more one of knowledge-referrals?

49. Recommendation #5 Increase Coordination of Services Why? What exactly?
For sample overall:
90% want service coordination; 6% get it
Only 1/3 of providers even know of others; only 13-15% often talk with or plan/coordinate services
What exactly?
Need to develop mechanism to make planning-coordinating common (& compensated) part of service practice

50. Special thank you’s to…
TN Disability Coalition & Community Partners
Cory Bradfield
Carol Westlake
John Shouse
Vanderbilt Kennedy Center
Terri Urbano
Jan Rosemergy
Lynnette Henderson
Kylie Beck
Courtney Taylor

51. And to… VKC-TRIAD Zack Warren, Pablo Juarez
TN Disability Pathfinder (Multi-cultural Outreach Program)
Cecilia Melo-Romie
Carolina Meyerson
Alexander Santana, &
Carole Moore-Slater
TN Council on Developmental Disabilities

52. And to… Tennessee Disability Partners & Affiliated Organizations
UT Boling
DLAC
The 538 different organizations and individuals who helped promote this survey
All of our respondents
Thank you.