1. Implications of the 2008 Statewide Autism Needs Assessment Presented at the 24 th 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. November 19, 2008 2Autism Needs Assessment Overview Background Background AACG charge, membership, & achievements AACG charge, membership, & achievements Objectives and data sources Objectives and data sources Results and use of data Results and use of data Alabama Autism Task Force update Alabama Autism Task Force update

3. November 19, 2008 3Autism Needs Assessment Background Autism Spectrum Disorders defined Autism Spectrum Disorders defined Need for Action Need for Action Alabama Autism Task Force formed Alabama Autism Task Force formed 3 Goals 3 Goals Needs Assessment Needs Assessment Funded by ACDD Funded by ACDD Conducted AACG Conducted AACG

4. November 19, 2008 4Autism Needs Assessment AACG Charge, Membership, Achievements Charge Charge Provide assessment of needs and resources Provide assessment of needs and resources AACG Composition AACG Composition Multiple institutions/organizations, 17 individuals Multiple institutions/organizations, 17 individuals Guided by Needs Assessment Committee (NAC) Guided by Needs Assessment Committee (NAC) AACG Achievements AACG Achievements Complete statewide needs assessment Complete statewide needs assessment Report findings & recommendations to Task Force Report findings & recommendations to Task Force

5. November 19, 2008 5Autism Needs Assessment Objectives of AACG Assess Assess needs and resources for children and adults with ASD Determine Determine gaps in information, resources, and services Prioritize Prioritize needs and gaps in information, services, and resources Present Present findings and recommendations to the Task Force

6. November 19, 2008 6Autism Needs Assessment Data Sources Professional Literature Professional Literature Community Forums Community Forums Survey on Autism Spectrum Disorders Survey on Autism Spectrum Disorders Provider Surveys Provider Surveys Key Informant Interviews Key Informant Interviews Focus Groups Focus Groups

7. November 19, 2008 7Autism Needs Assessment Diagnosis Early Intervention School-based Services Adult Services Family Support Medical Services

8. November 19, 2008 8Autism Needs Assessment Literature Review Screening and Diagnosis Screening and Diagnosis Early Screening Early Screening Diagnostic Evaluations Diagnostic Evaluations Intervention/Treatment Intervention/Treatment Early Childhood Early Childhood School-aged School-aged Adult Adult Health Care/Medical Health Care/Medical Family Support Family Support Statewide Systems of Care Statewide Systems of Care

9. November 19, 2008 9Autism Needs Assessment Community Forums 8 Locations (416 participants) 8 Locations (416 participants) Question Categories Question Categories Diagnosis Diagnosis Early Intervention Early Intervention School-based Services School-based Services Adult Services Adult Services Medical Services Medical Services Family Support Family Support

10. November 19, 2008 10Autism Needs Assessment Survey on Autism Spectrum Disorders Written and online Written and online 270 completed 270 completed by families, caregivers, & self-advocates by families, caregivers, & self-advocates during forums, in clinical settings, & online during forums, in clinical settings, & online Topics Topics Background Background Diagnosis Diagnosis Services (EI, Pre-school, Public School, Adult) Services (EI, Pre-school, Public School, Adult) Health Care / Medical Health Care / Medical

11. November 19, 2008 11Autism Needs Assessment Provider Surveys Key Informant Interviews Provider Surveys (171) – fall 2007 Provider Surveys (171) – fall 2007 23 rd EI Conference, Birmingham & online 23 rd EI Conference, Birmingham & online Key Informant Interviews (18) – spring 2008 Key Informant Interviews (18) – spring 2008 Conducted by AACG members Conducted by AACG members 9 questions 9 questions

12. November 19, 2008 12Autism Needs Assessment Provider & Key Informant Questions Role/relationship with individuals w/ASD Role/relationship with individuals w/ASD Definition of ASD Definition of ASD 3 strengths/resources 3 strengths/resources 3 weaknesses or needs 3 weaknesses or needs Info currently available Info currently available Info needed to identify/meet needs Info needed to identify/meet needs Best way to gather information Best way to gather information Groups/individuals who should assess needs Groups/individuals who should assess needs Other comments/issues Other comments/issues

13. November 19, 2008 13Autism Needs Assessment Provider/Key Informant Response Categories Definitions & Characteristics Definitions & Characteristics Strengths & Weaknesses of Services Strengths & Weaknesses of Services Info Currently Available Info Currently Available Info Needed to Identify/Meet Needs Info Needed to Identify/Meet Needs Method for Gathering Info Method for Gathering Info Other Comments Other Comments

14. November 19, 2008 14Autism Needs Assessment Focus Groups Agency reps, consumers, service providers Agency reps, consumers, service providers Four groups – each with one focus Four groups – each with one focus Conducted by AACG members Conducted by AACG members 9 questions 9 questions

15. November 19, 2008 15Autism Needs Assessment Final Report Categories Early Screening/Diagnosis Early Screening/Diagnosis Interventions (Birth-5, School-aged, Adult) Interventions (Birth-5, School-aged, Adult) Medical Services Medical Services Family Support Family Support Systems of Care Systems of Care

16. November 19, 2008 16Autism Needs Assessment Early Screening/Diagnosis -Selected Results-

17. November 19, 2008 17Autism Needs Assessment Early Screening/Diagnosis -Results- Nationally Nationally Parental concerns: 1 st 18 months Parental concerns: 1 st 18 months Average age at diagnosis: 3 years Average age at diagnosis: 3 years Alabama Alabama Average time concern to diagnosis: 3 years Average time concern to diagnosis: 3 years Average age at diagnosis: 6 years Average age at diagnosis: 6 years Few trained diagnosticians & providers Few trained diagnosticians & providers 25% received diagnosis outside of Alabama 25% received diagnosis outside of Alabama

18. November 19, 2008 18Autism Needs Assessment Early Screening/Diagnosis -Priority Needs- Practice guidelines exist for screening/diagnosis SO More provider training is needed More provider training is needed Early screening for should occur Early screening for should occur More ASD-specific diagnosticians & providers More ASD-specific diagnosticians & providers

19. November 19, 2008 19Autism Needs Assessment Early Screening/Diagnosis -Recommendations- Implement a statewide screening program Implement a statewide screening program Create educational materials Create educational materials Develop a regional system of clinics Develop a regional system of clinics

20. November 19, 2008 20Autism Needs Assessment Interventions for Birth-Five -Results-

21. November 19, 2008 21Autism Needs Assessment Interventions for Birth-Five -Priority Needs- Increase intervention hours Increase intervention hours ASD training for parents ASD training for parents Increase number of providers Increase number of providers ASD training for providers ASD training for providers

22. November 19, 2008 22Autism Needs Assessment Interventions for School-Aged Children -Selected Results-

23. November 19, 2008 23Autism Needs Assessment Interventions for School-Aged Children -Priority Needs- Broaden access to services Broaden access to services ASD training for school personnel ASD training for school personnel Understanding and awareness Understanding and awareness Evidence-based interventions Evidence-based interventions Parent education Parent education Increase support for children with ASD Increase support for children with ASD Greater intensity of services Greater intensity of services Transition support Transition support

24. November 19, 2008 24Autism Needs Assessment Adult Services -Results- 50% lack appropriate communication skills 50% lack appropriate communication skills Many have difficulties with daily living skills Many have difficulties with daily living skills Over half need supervision Over half need supervision Over half do not have support networks Over half do not have support networks Small percentages receive services Small percentages receive services

25. November 19, 2008 25Autism Needs Assessment Adult Services -Priority Needs- Education and training Education and training Access to services Access to services Increase transition and future planning Increase transition and future planning More ASD-specific specialists More ASD-specific specialists Tailored interventions Tailored interventions Support groups Support groups

26. November 19, 2008 26Autism Needs Assessment Interventions Across the Lifespan Need individually-tailored interventions Need individually-tailored interventions Key elements for effective intervention Key elements for effective intervention Intensive (min. of 25 hours/wk) Intensive (min. of 25 hours/wk) Targeted toward specific goals/core symptoms of ASD Targeted toward specific goals/core symptoms of ASD Developmentally-appropriate Developmentally-appropriate Specific training for providers and parents Specific training for providers and parents Interventions with best research-based evidence Interventions with best research-based evidence Applied behavior analysis (ABA) Applied behavior analysis (ABA) Developmentally-based socialization techniques Developmentally-based socialization techniques Structured teaching and visual supports Structured teaching and visual supports Peer and community education and awareness Peer and community education and awareness

27. November 19, 2008 27Autism Needs Assessment Interventions -Recommendations- Early Childhood and School-aged Increase number of intervention hours Increase number of intervention hours Include key elements of intervention Include key elements of intervention Education/training for educators, families, therapists Education/training for educators, families, therapists Provide technical assistance/support to schools Provide technical assistance/support to schools Train more ASD professionals Train more ASD professionals

28. November 19, 2008 28Autism Needs Assessment Interventions -Recommendations- Adult Coordinate intervention and support Coordinate intervention and support Implement collaborative approach Implement collaborative approach Fund insurance waiver Fund insurance waiver Training to provide adult support services Training to provide adult support services

29. November 19, 2008 29Autism Needs Assessment Medical Services -Results- Few medical professionals trained in ASD Few medical professionals trained in ASD Routine medical/dental care problematic Routine medical/dental care problematic Lack of research for some treatments Lack of research for some treatments Proliferation of alternative medicine treatments Proliferation of alternative medicine treatments Most had public or private insurance Most had public or private insurance

30. November 19, 2008 30Autism Needs Assessment Medical Services -Priority Needs- More training for primary care providers More training for primary care providers Training for a broad range of service providers Training for a broad range of service providers Increase coverage from state and insurers Increase coverage from state and insurers Provide medically-oriented, rather than mental health coverage Provide medically-oriented, rather than mental health coverage

31. November 19, 2008 31Autism Needs Assessment Medical Services/Health Care -Recommendations- Train physicians Train physicians Educate parents Educate parents Support research Support research Allocate state resources Allocate state resources Increase provider reimbursement Increase provider reimbursement Work with providers to expand insurance coverage Work with providers to expand insurance coverage

32. November 19, 2008 32Autism Needs Assessment Family Support -Results- Families desire more training Families desire more training Families are under extreme stress Families are under extreme stress Case management not widely available Case management not widely available

33. November 19, 2008 33Autism Needs Assessment Family Support -Priority Needs- Strengthen local support networks Strengthen local support networks Increase respite care provided by those with ASD-training Increase respite care provided by those with ASD-training Increase community programming Increase community programming Increase transportation services Increase transportation services

34. November 19, 2008 34Autism Needs Assessment Family Support -Recommendations- Increase respite care, summer camps, recreation Increase respite care, summer camps, recreation Increase availability of case management services Increase availability of case management services Provide information about support networks and recommended therapies Provide information about support networks and recommended therapies Obtain funding to widely distribute results of needs assessment Obtain funding to widely distribute results of needs assessment

35. November 19, 2008 35Autism Needs Assessment Systems of Care -Results- States develop regional centers States develop regional centers Need to coordinate care across agencies Need to coordinate care across agencies

36. November 19, 2008 36Autism Needs Assessment Systems of Care -Priority Needs- Develop regional diagnostic services Develop regional diagnostic services Provide regional training services Provide regional training services Offer ongoing consultation to schools Offer ongoing consultation to schools Model intervention programs Model intervention programs

37. November 19, 2008 37Autism Needs Assessment Systems of Care -Summary- Significant weaknesses exist in the services delivered Significant weaknesses exist in the services delivered Other states have effective programs Other states have effective programs Diagnostic services Diagnostic services Professional training services Professional training services On-going consultation and technical assistance to schools On-going consultation and technical assistance to schools Model programs using scientifically-based practices Model programs using scientifically-based practices These programs provide These programs provide Certification programs for professionals specializing in ASD Certification programs for professionals specializing in ASD Student practicum placements Student practicum placements Opportunities to develop and use new treatment approaches Opportunities to develop and use new treatment approaches

38. November 19, 2008 38Autism Needs Assessment Systems of Care -Recommendations- Examine programs in neighboring states Examine programs in neighboring states Consider integrated services Consider integrated services ASD-related training is a priority in AL ASD-related training is a priority in AL Need a comprehensive and coordinated system of care across the lifespan Need a comprehensive and coordinated system of care across the lifespan Strengthen statewide advocacy - ASA Strengthen statewide advocacy - ASA

39. November 19, 2008 39Autism Needs Assessment 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 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 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 Early intervention programs for ASD are estimated to save society more than $200,000 per child by the time the child reaches adulthood

40. November 19, 2008 40Autism Needs Assessment Financial Impact -Recommendations- State resources need to be permanently allocated to these efforts in the form of budget line items 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 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 Increase state support for services to decrease financial burden for families

41. Alabama Autism Task Force & Advocacy

42. November 19, 2008 42Autism Needs Assessment Subcommittee Leadership – Year 1 Chairman Cam Ward, AL Rep. Dist. 49 Chairman Cam Ward, AL Rep. Dist. 49 Subcommittees Subcommittees Training & Education (Jim Wrye) Training & Education (Jim Wrye) Healthcare (Bama Hager) Healthcare (Bama Hager) Family Support (Matt Remick ) Family Support (Matt Remick ) Systems of Care (Lee Yount) Systems of Care (Lee Yount) Intervention (Tim Ferguson) Intervention (Tim Ferguson)

43. November 19, 2008 43Autism Needs Assessment Areas to be explored

44. November 19, 2008 44Autism Needs Assessment Areas to be explored

45. November 19, 2008 45Autism Needs Assessment Recommendations from Year 1 22 recommendations were developed by considering findings of the statewide needs assessment 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 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 Additionally, it was determined that the Task Force subcommittees for Year 2 needed reorganization

46. November 19, 2008 46Autism Needs Assessment Advocacy Efforts Autism Awareness Day – held April 3, 2008 at State Capitol 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 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

49. November 19, 2008 49Autism Needs Assessment House Bill 150 / HJR 12 2008 regular legislative session HB 150 (Alabama Autism Support Act) HB 150 (Alabama Autism Support Act) Focus: establish members and duties of Interagency Autism Coordinating Council Focus: establish members and duties of Interagency Autism Coordinating Council Before the session ended, HB 150 became HJR 3 and was enacted Before the session ended, HB 150 became HJR 3 and was enacted HJR 12 HJR 12 Extended the Autism Task Force 1 more year Extended the Autism Task Force 1 more year

50. November 19, 2008 50Autism Needs Assessment Subcommittee Leadership – Year 2 Subcommittees Early Screening & Diagnosis (Hanes Swingle) Early Screening & Diagnosis (Hanes Swingle) Intervention Intervention 0-5 (Elizabeth Griffith) 0-5 (Elizabeth Griffith) 6-21 (Jim Wrye) 6-21 (Jim Wrye) Adult (Joe Carter) Adult (Joe Carter) Healthcare (Bama Hager) Healthcare (Bama Hager) Systems of Care (Jennifer Sellers ) Systems of Care (Jennifer Sellers ) Financial Impact (John Houston) Financial Impact (John Houston)

51. November 19, 2008 51Autism Needs Assessment Areas of Focus – Year 2 Diagnosis & Screening Diagnosis & Screening Intervention Intervention Birth - 5 years Birth - 5 years 6 - 21 years 6 - 21 years Adult Adult Medical/Healthcare Medical/Healthcare Systems of Care Systems of Care

52. November 19, 2008 52Autism Needs Assessment Interagency Autism Coordinating Council (IACC) DMH/MR as lead agency DMH/MR as lead agency Will hire an Autism Coordinator Will hire an Autism Coordinator Continue work of Task Force as a more permanent council Continue work of Task Force as a more permanent council

53. November 19, 2008 53Autism Needs Assessment Ongoing Advocacy Efforts Reduce the average age of diagnosis in Alabama Reduce the average age of diagnosis in Alabama Increase the hours of targeted intervention available for children birth – 5 years Increase the hours of targeted intervention available for children birth – 5 years A challenge due to decreased tax revenues in ’08! A challenge due to decreased tax revenues in ’08! Increase access to evidence-based interventions and trained providers Increase access to evidence-based interventions and trained providers

54. November 19, 2008 54Autism Needs Assessment Upcoming Meetings Meetings are open to public & posted online at: Meetings are open to public & posted online at: www.autism-alabama.org www.autism-alabama.org www.autism-alabama.org www.camward.com www.camward.com www.camward.com Intervention birth – 5 years Subcommittee Meeting Intervention birth – 5 years Subcommittee Meeting Tues, Dec. 2 nd, 1:00-3:00 p.m. in Rm 123 of State House Tues, Dec. 2 nd, 1:00-3:00 p.m. in Rm 123 of State House Diagnosis and Screening Subcommittee Meeting Diagnosis and Screening Subcommittee Meeting Wed, December 10 th, 10:00 – 2:00 p.m. in Rm 123 of State House Wed, December 10 th, 10:00 – 2:00 p.m. in Rm 123 of State House Please participate! Please participate!

55. November 19, 2008 55Autism Needs Assessment For more information regarding Needs Assessment Dr. Beverly Mulvihill, PI UAB School of Public Health 1530 3 rd Avenue So., RPHB 320, Birmingham, AL 35294- 0022, Tel. 205-934-7161

56. November 19, 2008 56Autism Needs Assessment For more information regarding Task Force Rep. Cam Ward Rep. Cam Ward www.camward.com www.camward.com www.camward.com Autism Society of Alabama Autism Society of Alabama www.autism-alabama.org www.autism-alabama.org www.autism-alabama.org