State of the State Presentation PENNSYLVANIA Act Early Regional Summit March 25 th & 26 th 2010 Philadelphia,
DATA: IDEA Child Count: Children with Autism 16000 14000 12000 10000 8000 3 ‐ 5 years old 6000 6 ‐ 21 years old 4000 2000 0 2004 2005 2006 2007 2008
CURRENT STATE SYSTEM Part C & Child find programs � Integrated under OCDEL (Office of Child Development and Early Learning), birth to five � Joint Office of the Department of Public Welfare (DPW) & Department of Education (PDE) � 1 ‐ 800 CONNECT HELPLINE refers families to the appropriate early intervention agency � Bureaus: Early Intervention (Part C & Part B); Early Learning Services; Subsidized Child Care Services; Certification Services
CURRENT STATE SYSTEM Other university ‐ based programs • AUCD affiliated programs – LENDs: CHOP, UCLID (CHP) – DBP & IDDRC: CHOP – UCEDD: Temple • Other research related to early identification intervention, and risk factors for ASD – CHOP/PENN: ADDM, SEED, Infants siblings at risk for ASD, ABA trial in Philadelphia public schools, Regional research registry – Drexel: EARLI – PITT: NIH CEAR: At ‐ risk Infants; Newly Diagnosed Toddlers; Pittsburgh Early Autism Study; Vocal ‐ Motor Development in at ‐ risk infants; – CHP/PITT ‐ Sleep Disturbance Intervention; Parent Training
CURRENT STATE SYSTEM Other elements • Regional Diagnostic clinics – Well established specialty clinics are available, although waiting lists can vary from 6 ‐ 24mos • Regional Autism Center (CHOP – Susan Levy) • Autism Center (CHP – Cynthia Johnson) • Fragile X Center (CHP – Robert Noll) • Geisinger (Myers, Challman) • And others we have forgotten about! • Other innovative approaches – Early Childhood Mental Health Project
CURRENT STATE SYSTEM Behavioral Health � Children with ASD are more likely to get some 1:1 paraprofessional support (Therapeutic Support Staff, or TSS /wraparound) � In the home, community, or school � Funded through Beh Health Rehab. Svces (BHRS) � Especially if there are behavioral or safety issues � TSS are precluded from addressing academic/ daily living goals � TSS are supervised by Behavioral Specialist Consultants
STATEWIDE AUTISM INITIATIVES/ RESOURCES Autism task force � Established in 2004 � Multiple stakeholders state ‐ wide, strong legislative support, central role for advocates � Produced comprehensive report � Diagnostic Work Group developed & presented guidelines for ASD screening & diagnosis � 4 of 5 recommendations acted upon to date: � � Establish a Bureau of Autism Services & � Autism waiver, � enact Autism Insurance legislation, & � create regional resource (ASERT) centers � X Demonstrate blended funding
STATEWIDE AUTISM INITIATIVES/ RESOURCES Bureau of Autism Services Part of DPW, direct report to Secretary of Public Welfare • 2009 ‐ 2010 Budget : $19.5 million • 3 ASERT ( A utism s ervice, e ducation, r esearch & t raining) Centers funded • on two year cycle – All Include training in early screening & diagnosis – Comprehensive Family Needs Survey completed by 3500+ now being analyzed Bulk of other funding goes • – Services and supports (e.g., $500 mini ‐ grants) – Autism ‐ specific training to increase the capacity of professionals statewide – Adult waivers and innovative ACAP program Autism Census completed in October 2009, using 2005 data from PDE and • DPW, identified 20 000 – Overall prevalence close to 1/150 but adults under ‐ represented – Rates widely vary across counties – 50% received services only from DPW or PDE
STATEWIDE AUTISM INITIATIVES/ RESOURCES Conferences/statewide trainings � Annual National Autism Conf. @ State College � Sponsored by the DOE, Bureau of Special Ed � Comprehensive, evidence ‐ based information to assist educators, other professionals, and families in developing effective educational programming for all students with autism spectrum disorders � National and local speakers � Parallel conference organized under DPW, focused largely on providers of adult services
STATEWIDE AUTISM INITIATIVES/ RESOURCES Technical Assistance & Training Early Intervention Technical Assistance (EITA) • – Funded by DPW and DOE, collaborates with OCDEL (Part C & B) – 0 ‐ 5 component of broader network based at DOE ‐ PaTTAN (Pennsylvania Training and Technical Assistance Network) – Works at the county level (for 3 ‐ 5 via Intermediate Units) – Includes some Autism ‐ specific trainings and services Pennsylvania Early Learning Keys to Quality • – System of professional development and technical assistance for PA’s Early Learning Programs (birth to 5) across the Commonwealth, divided into 6 regions Pre ‐ service Training • – University of Pittsburgh, School of Education: Early Intervention Autism Specialization M.Ed. Program – Penn State University, University of Pittsburgh & others: Board Certified Behavioral Analyst (BCBA) Program
STATEWIDE AUTISM INITIATIVES/ RESOURCES Advocacy Organizations and groups � General � Parent Education and Advocacy Leadership Center (PEAL) � Parent Education Network (PEN) � Parent to Parent of Pennsylvania � Hispanos Unidos para Niños Exceptionales (HUNE) � Autism Specific � ABOARD � Autism Speaks
STATEWIDE AUTISM INITIATIVES/ RESOURCES Other components � PA Developmental Disabilities Council � Early Intervention Interagency Coordinating Council � 15 ‐ member advisory board of parents, Department of Education, Public Welfare, and Health professionals, and others who are appointed by the governor. � The SICC advises the departments on the Pennsylvania Early Intervention System
CURRENT LEGISLATIVE ACTIVITIES Insurance coverage (Act 62) � Covers up to $36k/year, for persons with ASD under 21 � Not required of all insurers � Not everyone can prescribe treatment � Must produce socially significant improvement or prevent loss of attained skill or function � “medically necessary diagnostic & treatment services” � Categories of covered services include ABA � IEP related services are not necessarily covered � No specific penalties for violations
CURRENT LEGISLATIVE ACTIVITIES Waivers � Waiver established in 2008 for adults, who previously had no dedicated services � $20 million ‐ a ‐ year program � Expected to serve up to 200 individuals 21 years of age and older with autism, was approved by the U.S. Department of Health and Human Services, Center for Medicare and Medicaid Services � But census indicated that the number of adults with ASD is likely more than 3500
Current Challenges and Gaps � PA is a large state and diverse state � Some areas have struggled with loss of industry and demise of agriculture � Pockets of poverty in urban & suburban regions � Substantial linguistic & cultural diversity in some regions � Significant budget shortfalls at state and local level � Inconsistent coordination across agencies despite strong initiatives within agencies
Looking towards the future � Increased collaboration among existing teams in health, public welfare, and education � Work towards a model of blended funding � Reduce /eliminate disparities in access to services for traditionally underserved groups � Establish a network of parent groups � A measurable goal? To clearly reduce the length of time from the expression of concern re ASD to onset of services, across all groups
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