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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:

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implications of the 2008 statewide autism needs assessment

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

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

Autism Needs Assessment

background
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

aacg charge membership achievements
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

objectives of aacg
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

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

Autism Needs Assessment

slide7

Diagnosis

Medical Services

Early Intervention

Family Support

School-based Services

Adult Services

Autism Needs Assessment

literature review
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

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

Autism Needs Assessment

survey on autism spectrum disorders
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

provider surveys key informant interviews
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

provider key informant questions
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

provider key informant response categories
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

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

Autism Needs Assessment

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

Autism Needs Assessment

early screening diagnosis results
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

early screening diagnosis priority needs
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

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

Autism Needs Assessment

interventions for birth five priority needs
Interventions for Birth-Five-Priority Needs-
  • Increase intervention hours
  • ASD training for parents
  • Increase number of providers
  • ASD training for providers

Autism Needs Assessment

interventions for school aged children priority needs
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

adult services results
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

adult services priority needs
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

interventions across the lifespan
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

interventions recommendations
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

interventions recommendations28
Interventions-Recommendations-

Adult

  • Coordinate intervention and support
  • Implement collaborative approach
  • Fund insurance waiver
  • Training to provide adult support services

Autism Needs Assessment

medical services results
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

medical services priority needs
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

medical services health care recommendations
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

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

Autism Needs Assessment

family support priority needs
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

family support recommendations
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

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

Autism Needs Assessment

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

Autism Needs Assessment

systems of care summary
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

systems of care recommendations
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

financial impact summary
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

financial impact recommendations
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

subcommittee leadership year 1
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

areas to be explored
Areas to be explored

Autism Needs Assessment

areas to be explored44
Areas to be explored

Autism Needs Assessment

recommendations from year 1
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

advocacy efforts
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

house bill 150 hjr 12
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

subcommittee leadership year 2
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

areas of focus year 2
Areas of Focus – Year 2
  • Diagnosis & Screening
  • Intervention
    • Birth - 5 years
    • 6 - 21 years
    • Adult
  • Medical/Healthcare
  • Systems of Care

Autism Needs Assessment

interagency autism coordinating council iacc
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

Autism Needs Assessment

ongoing advocacy efforts
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

Autism Needs Assessment

upcoming meetings
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, 1:00-3:00 p.m. in Rm 123 of State House
  • Diagnosis and Screening Subcommittee Meeting
    • Wed, December 10th, 10:00 – 2:00 p.m. in Rm 123 of State House
  • Please participate!

Autism Needs Assessment

for more information regarding needs assessment
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

Autism Needs Assessment

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

Autism Needs Assessment