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Implications of the 2008 Statewide Autism Needs Assessment

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Title: 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. ONeal - 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

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

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

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

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

7
Diagnosis
Medical Services
Early Intervention
Family Support
School-based Services
Adult Services
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

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

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

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

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

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

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

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

16
Early Screening/Diagnosis-Selected Results-
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

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

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

20
Interventions for Birth-Five-Results-
21
Interventions for Birth-Five-Priority Needs-
  • Increase intervention hours
  • ASD training for parents
  • Increase number of providers
  • ASD training for providers

22
Interventions for School-Aged Children-Selected
Results-
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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

43
Areas to be explored
44
Areas to be explored
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

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

47
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48
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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

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)

51
Areas of Focus Year 2
  • Diagnosis Screening
  • Intervention
  • Birth - 5 years
  • 6 - 21 years
  • Adult
  • Medical/Healthcare
  • Systems of Care

52
Interagency Autism Coordinating Council (IACC)
  • DMH/MR as lead agency
  • Will hire an Autism Coordinator
  • Continue work of Task Force as a more permanent
    council

53
Ongoing Advocacy Efforts
  • Reduce the average age of diagnosis in Alabama
  • Increase the hours of targeted intervention
    available for children birth 5 years
  • A challenge due to decreased tax revenues in 08!
  • Increase access to evidence-based interventions
    and trained providers

54
Upcoming Meetings
  • Meetings are open to public posted online at
  • www.autism-alabama.org
  • www.camward.com
  • Intervention birth 5 years Subcommittee Meeting
  • Tues, Dec. 2nd, 100-300 p.m. in Rm 123 of State
    House
  • Diagnosis and Screening Subcommittee Meeting
  • Wed, December 10th, 1000 200 p.m. in Rm 123
    of State House
  • Please participate!

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

56
For more information regarding Task Force
  • Rep. Cam Ward
  • www.camward.com
  • Autism Society of Alabama
  • www.autism-alabama.org
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