State of the State: Alabama Act Early Regional Summit October 29-30 2009 Atlanta, Georgia
Alabama 51,690 square miles, population just over 4 million 55% of children reside in urban areas and 45% in rural areas (Census Bureau Data by county of residence for 2004) 26% of children live in poverty, ranking 41st in the country 48th among the 50 states in children s wellbeing (2007 Kids Count Database) 65 of 67 counties designated as health professional shortage areas (HRSA Bureau of Health Professionals)
Current State Systems Early Screening and Identification Public Awareness poll indicates that 80% of AL residents view autism as a significant problem (USA, 2008) AL ABCD Screening Academy: Statewide Spread includes AAP sponsored events for training on screeners & raising awareness Systems of Care Grant - DMH Diagnosis Diagnostic clinics expanding and growing in number University-Based & Private Alabama Autism Providers Network
Current State Systems Intervention Alabama s Early Intervention System, IDEA, Part C Lead Agency-AL Dept. of Rehabilitation Services, Division of Early Intervention. Services provided through contracts with AIDB, ADMH and ADRS-CRS, the latter 2 sub-contract with community-based public and private providers. ADRS has a vendor system, as well. Serve 0-2 years with >25% delay, diagnosis, or clinical opinion. Child Find & Special Education Services, IDEA, Part B Provided through the Department of Education Office of Special Education. Serve 3-21 years with educational diagnosis. Pre-Kindergarten Initiative Early Head Start/Head Start Preschools specific to ASD or supportive of disabilities Alabama Autism Providers Network
Current State Systems Family Support & Education Autism Society of Alabama sponsors multiple support groups across the state & education opportunities Alabama s Early Intervention System Services Parent education groups Governor s Task Force on Strengthening Families Conference stipends Provider Training UCEDD/LEND ASD Supplement Pre-service programs in Education including ASD Conferences: Alabama Autism Conference & Early Intervention and Preschool Conference
Current State Systems Coordination of Services Beginning steps have been taken: State Autism Coordinator Coordinating Council Regional Centers Comprehensive support teams - DMH Inclusion in Home Communities Alabama Council for Developmental Disabilities (ACDD) Medical Home Grant (Medicaid) Alabama Disabilities Advocacy Program (ADAP)
Statewide Autism Legislative Activities: Alabama Autism Task Force HB 23 Alabama Autism Task Force (Formed 3/07) (27 appointed members and many volunteers) Charged with recommending ways to improve the lives of individuals with ASD and their families: 1. Statewide Autism Awareness & Needs Assessments - 9/07 Awarded grants to conduct by AL DD Council 6/08 Completed Final Assessments (available online) 2. Alabama Autism Task Force Report 1/09 Final Report submitted to governor and legislature available online; Task Force dissolved
Statewide Autism Legislative Activities: Alabama Interagency Autism Coordinating Council HJR3 (5/08) / HB 41 (4/09) Riley Ward Alabama Autism Support Act To develop a long-term plan, reviewed annually, for a comprehensive statewide system of care, which, to the extent practical, is derived from scientific based research and nationally recognized best practices (p. 7). AIACC Formation: - 10/08 First Council Meeting - 09/09 State Autism Coordinator hired - 10/09 Council Bylaws passed Subcommittees formed The implementation of this act shall be subject to the availability of appropriations (p. 8).
Statewide Autism Legislative Activities: Regional Autism Centers HB 615 Regional Autism Centers Act (5/09) The number of regional centers shall be determined by the AIACC, and where possible; shall be based on campuses of state universities and colleges which provide a proposal for a center to the Alabama Interagency Coordinating Council (p. 4). Centers: - Operationally and fiscally independent - Providing evidence-based services - Consistent in service delivery - Coordination of services within and between state and local agencies and school districts (may not duplicate services) The Provisions of this section shall become operative only when funds are appropriated by the legislature through a line item appropriation (p.5).
More Collaborations Alabama Disabilities Advocacy Program Alabama Autism Providers Network Annual Autism Conference Annual Early Intervention and Preschool Conference ASA Camps Smart Start (Alabama Partnership for Children)
Current Challenges and Gaps Early Identification Lack of professional and public awareness of early signs. Need for medical professional training and on-site consultation regarding use of screening instruments at 18 & 24 month well-child visits. Need for community-based services; Alabama is a rural state designated as a HRSA Health Professional Shortage Area. Diagnosis Average age of diagnosis at 66 months (CDC, 2007) Lack of access to services (AANA, 2008) Few providers and agencies with specialized assessment training. Rural nature of state makes access limited Long waiting lists (9-12 months) Inconsistency in diagnostic criteria across state agencies.
Current Challenges and Gaps Intervention Most (69%) Alabamians know of no services in their community Type of service and quality are based on availability rather than evidence base or individual need Evidence base not reviewed regularly and standards not set Eligibility criteria varies by agency and may not capture SE deficits Preschool not universally available Intensity of service is low & progress slow Over ½ children 0-3 years receive <4 hours per month; Over ½ children 3-5 years receive <29 hours per month (AANA, 2008) Decisions to continue/discontinue particular intervention strategy are not data-based and evaluation of individual progress occurs at lengthy intervals Family Support & Education Lack of on-going support; Difficulty accessing knowledgeable supports Shift away from family-centered services at 3
Current Challenges and Gaps Provider Training Providers not trained to fidelity in up-to-date evidence based interventions Lack of coaching and technical assistance to ensure that interventions are implemented to fidelity and individualized Coordination of Services Fractionalized service system No centralized clearinghouse of information about existing services Most children do not have a service coordinator beyond age 3 Inclusion in Home Communities Exclusion due to lack of awareness/acceptance in systems families typically turn to (ex. churches, community centers) Services are concentrated in population centers (I-65 corridor)
Looking Towards the Future Individuals with ASD will experience a lifetime of seamless services from the earliest detection to timely diagnostics and individualized evidence-based and best practice interventions in their home communities. Families will have access to the information, support, training, and resources they need.