Implications of the 2008 Statewide Autism Needs Assessment

1. Implications of the 2008 Statewide Autism Needs Assessment Presented at the 24th Annual Early Intervention and Preschool Conference and “Success by 6” Conference Mobile, Alabama, November 19, 2008 Presenters: Brian F. Geiger & Marcia R. O’Neal - UAB School of Education and Center for Educational Accountability Heather Vader - UCP Jennifer Robertson - Autism Society of Alabama

2. Overview • Background • AACG charge, membership, & achievements • Objectives and data sources • Results and use of data • Alabama Autism Task Force update Autism Needs Assessment

3. Background • Autism Spectrum Disorders defined • Need for Action • Alabama Autism Task Force formed • 3 Goals • Needs Assessment • Funded by ACDD • Conducted AACG Autism Needs Assessment

4. AACG Charge, Membership, Achievements • Charge • Provide assessment of needs and resources • AACG Composition • Multiple institutions/organizations, 17 individuals • Guided by Needs Assessment Committee (NAC) • AACG Achievements • Complete statewide needs assessment • Report findings & recommendations to Task Force Autism Needs Assessment

5. Objectives of AACG • Assess needs and resources for children and adults with ASD • Determine gaps in information, resources, and services • Prioritize needs and gaps in information, services, and resources • Present findings and recommendations to the Task Force Autism Needs Assessment

6. Data Sources • Professional Literature • Community Forums • Survey on Autism Spectrum Disorders • Provider Surveys • Key Informant Interviews • Focus Groups Autism Needs Assessment

7. Diagnosis Medical Services Early Intervention Family Support School-based Services Adult Services Autism Needs Assessment

8. Literature Review • Screening and Diagnosis • Early Screening • Diagnostic Evaluations • Intervention/Treatment • Early Childhood • School-aged • Adult • Health Care/Medical • Family Support • Statewide Systems of Care Autism Needs Assessment

9. Community Forums • 8 Locations (416 participants) • Question Categories • Diagnosis • Early Intervention • School-based Services • Adult Services • Medical Services • Family Support Autism Needs Assessment

10. Survey on Autism Spectrum Disorders • Written and online • 270 completed • by families, caregivers, & self-advocates • during forums, in clinical settings, & online • Topics • Background • Diagnosis • Services (EI, Pre-school, Public School, Adult) • Health Care / Medical Autism Needs Assessment

11. Provider SurveysKey Informant Interviews • Provider Surveys (171) – fall 2007 • 23rd EI Conference, Birmingham & online • Key Informant Interviews (18) – spring 2008 • Conducted by AACG members • 9 questions Autism Needs Assessment

12. Provider & Key Informant Questions • Role/relationship with individuals w/ASD • Definition of ASD • 3 strengths/resources • 3 weaknesses or needs • Info currently available • Info needed to identify/meet needs • Best way to gather information • Groups/individuals who should assess needs • Other comments/issues Autism Needs Assessment

13. Provider/Key Informant Response Categories • Definitions & Characteristics • Strengths & Weaknesses of Services • Info Currently Available • Info Needed to Identify/Meet Needs • Method for Gathering Info • Other Comments Autism Needs Assessment

14. Focus Groups • Agency reps, consumers, service providers • Four groups – each with one focus • Conducted by AACG members • 9 questions Autism Needs Assessment

15. Final Report Categories • Early Screening/Diagnosis • Interventions (Birth-5, School-aged, Adult) • Medical Services • Family Support • Systems of Care Autism Needs Assessment

16. Early Screening/Diagnosis-Selected Results- Autism Needs Assessment

17. Early Screening/Diagnosis-Results- • Nationally • Parental concerns: 1st 18 months • Average age at diagnosis: 3 years • Alabama • Average time concern to diagnosis: 3 years • Average age at diagnosis: 6 years • Few trained diagnosticians & providers • 25% received diagnosis outside of Alabama Autism Needs Assessment

18. Early Screening/Diagnosis-Priority Needs- Practice guidelines exist for screening/diagnosis SO • More provider training is needed • Early screening for should occur • More ASD-specific diagnosticians & providers Autism Needs Assessment

19. Early Screening/Diagnosis-Recommendations- • Implement a statewide screening program • Create educational materials • Develop a regional system of clinics Autism Needs Assessment

20. Interventions for Birth-Five-Results- Autism Needs Assessment

21. Interventions for Birth-Five-Priority Needs- • Increase intervention hours • ASD training for parents • Increase number of providers • ASD training for providers Autism Needs Assessment

22. Interventions for School-Aged Children-Selected Results- Autism Needs Assessment

23. Interventions for School-Aged Children-Priority Needs- • Broaden access to services • ASD training for school personnel • Understanding and awareness • Evidence-based interventions • Parent education • Increase support for children with ASD • Greater intensity of services • Transition support Autism Needs Assessment

24. Adult Services-Results- • 50% lack appropriate communication skills • Many have difficulties with daily living skills • Over half need supervision • Over half do not have support networks • Small percentages receive services Autism Needs Assessment

25. Adult Services-Priority Needs- • Education and training • Access to services • Increase transition and future planning • More ASD-specific specialists • Tailored interventions • Support groups Autism Needs Assessment

26. Interventions Across the Lifespan • Need individually-tailored interventions • Key elements for effective intervention • Intensive (min. of 25 hours/wk) • Targeted toward specific goals/core symptoms of ASD • Developmentally-appropriate • Specific training for providers and parents • Interventions with best research-based evidence • Applied behavior analysis (ABA) • Developmentally-based socialization techniques • Structured teaching and visual supports • Peer and community education and awareness Autism Needs Assessment

27. Interventions-Recommendations- Early Childhood and School-aged • Increase number of intervention hours • Include key elements of intervention • Education/training for educators, families, therapists • Provide technical assistance/support to schools • Train more ASD professionals Autism Needs Assessment

28. Interventions-Recommendations- Adult • Coordinate intervention and support • Implement collaborative approach • Fund insurance waiver • Training to provide adult support services Autism Needs Assessment

29. Medical Services-Results- • Few medical professionals trained in ASD • Routine medical/dental care problematic • Lack of research for some treatments • Proliferation of alternative medicine treatments • Most had public or private insurance Autism Needs Assessment

30. Medical Services-Priority Needs- • More training for primary care providers • Training for a broad range of service providers • Increase coverage from state and insurers • Provide medically-oriented, rather than mental health coverage Autism Needs Assessment

31. Medical Services/Health Care-Recommendations- • Train physicians • Educate parents • Support research • Allocate state resources • Increase provider reimbursement • Work with providers to expand insurance coverage Autism Needs Assessment

32. Family Support-Results- • Families desire more training • Families are under extreme stress • Case management not widely available Autism Needs Assessment

33. Family Support-Priority Needs- • Strengthen local support networks • Increase respite care provided by those with ASD-training • Increase community programming • Increase transportation services Autism Needs Assessment

34. Family Support-Recommendations- • Increase respite care, summer camps, recreation • Increase availability of case management services • Provide information about support networks and recommended therapies • Obtain funding to widely distribute results of needs assessment Autism Needs Assessment

35. Systems of Care-Results- • States develop regional centers • Need to coordinate care across agencies Autism Needs Assessment

36. Systems of Care-Priority Needs- • Develop regional diagnostic services • Provide regional training services • Offer ongoing consultation to schools • Model intervention programs Autism Needs Assessment

37. Systems of Care-Summary- • Significant weaknesses exist in the services delivered • Other states have effective programs • Diagnostic services • Professional training services • On-going consultation and technical assistance to schools • Model programs using scientifically-based practices • These programs provide • Certification programs for professionals specializing in ASD • Student practicum placements • Opportunities to develop and use new treatment approaches Autism Needs Assessment

38. Systems of Care-Recommendations- • Examine programs in neighboring states • Consider integrated services • ASD-related training is a priority in AL • Need a comprehensive and coordinated system of care across the lifespan • Strengthen statewide advocacy - ASA Autism Needs Assessment

39. Financial Impact-Summary- • Financial implications of meeting the training and service delivery needs of individuals with ASD and their families in AL are substantial and should be given careful consideration • Monies spent early in life can decrease dollars needed later • Early intervention programs for ASD are estimated to save society more than $200,000 per child by the time the child reaches adulthood Autism Needs Assessment

40. Financial Impact-Recommendations- • State resources need to be permanently allocated to these efforts in the form of budget line items • Increase rate of provider reimbursement to increase the number of services available to individuals with ASD • Increase state support for services to decrease financial burden for families Autism Needs Assessment

41. Alabama Autism Task Force & Advocacy

42. Subcommittee Leadership – Year 1 • Chairman Cam Ward, AL Rep. Dist. 49 • Subcommittees • Training & Education (Jim Wrye) • Healthcare (Bama Hager) • Family Support (Matt Remick ) • Systems of Care (Lee Yount) • Intervention (Tim Ferguson) Autism Needs Assessment

43. Areas to be explored Autism Needs Assessment

44. Areas to be explored Autism Needs Assessment

45. Recommendations from Year 1 • 22 recommendations were developed by considering findings of the statewide needs assessment • Task Force recommendations indicated a need for an Interagency Autism Coordinating Council and a Regional Center framework • Additionally, it was determined that the Task Force subcommittees for Year 2 needed reorganization Autism Needs Assessment

46. Advocacy Efforts • Autism Awareness Day – held April 3, 2008 at State Capitol • Development of brochure in collaboration with the Alabama Autism Surveillance Project, the Alabama Autism Collaborative Group, the Alabama Task Force, and the Autism Society of Alabama Autism Needs Assessment

49. House Bill 150 / HJR 12 2008 regular legislative session • HB 150 (Alabama Autism Support Act) • Focus: establish members and duties of Interagency Autism Coordinating Council • Before the session ended, HB 150 became HJR 3 and was enacted • HJR 12 • Extended the Autism Task Force 1 more year Autism Needs Assessment

50. Subcommittee Leadership – Year 2 Subcommittees • Early Screening & Diagnosis (Hanes Swingle) • Intervention • 0-5 (Elizabeth Griffith) • 6-21 (Jim Wrye) • Adult (Joe Carter) • Healthcare (Bama Hager) • Systems of Care (Jennifer Sellers ) • Financial Impact (John Houston) Autism Needs Assessment