OFFICE OF DEVELOPMENTAL PROGRAMS

1. OFFICE OF DEVELOPMENTAL PROGRAMS BUREAU OF AUTISM SERVICES

2. Centers for Disease Control recently reported that 1 in 150 children have ASD. Boys are four times more likely to have ASD than girls. Autism affects social interaction, communication, and sensory processing. ASD can co-occur with Mental Retardation, Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), Tourette’s Syndrome, Bipolar Disorder, and even Schizophrenia. Early and intensive behavioral intervention has repeatedly been proven to be the most effective treatment. 50% of people living with ASD have IQs above 70. In ASD, average or above average IQ does not necessarily correlate with a lesser need for support. ASD treatments are primarily behavioral. People living with ASD can continue to learn throughout their lifetime, given proper supports and individualized treatments. Each person with ASD has their own presentation – there is no “one size fits all”. BASIC AUTISM INFORMATION

3. OUR MISSION Our Mission is to Develop, Coordinate, Integrate, Finance, and Establish Policies and Services to Effectively Serve Pennsylvanians of Every Age and Ability Living with Autism Spectrum Disorders (ASD), as well as their Families and Caregivers, to Enhance Quality of Life and to Promote Independence.

4. OUR VALUES • Every person living with ASD can have an improved quality of life given the right supports delivered by trained staff. • Families are our essential partners. • Our goal is to increase independence and self-sufficiency. • Our services must be person and family centered.

5. OUR BEGINNING THE PENNSYLVANIA AUTISM TASK FORCE • Created by Secretary Richman in 2003 • Comprised of families, professionals and educators • Submitted 1,000 page final report in December 2004 • The key recommendations from this report drive the work of the Bureau of Autism Services

6. TASK FORCE FINDINGS • The current mental health/mental retardation system is not structured to meet the needs of people living with autism and other chronic neurodevelopmental disorders. • Pennsylvania is experiencing a dearth of qualified, trained professionals to evaluate, treat, educate and provide other services to people living with autism. • There are almost no community-based services for adults with autism • There is a lack of coordination within and across the multiple systems that provide care for people living with autism. • The current system provides no incentives for delivering quality care. • There is no cohesive set of policies and plans to provide consistent care and education to people living with autism across the Commonwealth. • The existing system is not able to address differences in individuals living with autism. • The current education system does not meet the needs of people living with autism.

7. Autism Task Force Key Recommendations Create an Office of Disability within DPW with a Bureau of Autism Spectrum and Related Disorders. Encourage the creation of a consumer-led information and advocacy organization. Develop an Autism-specific Medicaid waiver. Situate regional Autism Centers across the state. Develop a creative mechanisms for blending and braiding funding between Education and Medicaid to ensure coordinated, collaborative care across systems. OUR DRIVING FORCE

8. OUR GOALS • Establish, fund, staff and integrate autism services within the Office of Developmental Programs. • Establish and fund services to meet the needs of individuals living with ASD, not currently eligible for services. • Improve and streamline existing services and supports for people living with ASD. • Establish sustainable intra- and inter-systemic collaboration. • Target, prioritize, strategize, and develop specific plans and protocols surrounding training, both internal and external.

9. OUR GOALS (con’t) • Build capacity of quality service providers • Establish Autism specific standards for diagnosis and assessment. • Develop and accurate census of persons with ASD throughout PA. • Support the creation of information/advocacy entities to ensure that all consumers have a meaningful voice stakeholder issues.

10. PRIORITIES • Develop targeted supports and services for adults living with autism. This initiative will focus on the need to develop capacity and in the area of adult service/support provision. The objective is to design comprehensive and standardized adult service and support training modules which may be utilized by providers statewide to prepare and train support staff in how to effectively meet the needs of adults with ASD across home, work, and community settings. • Development of assessment standards and training protocols targeted to build capacity amongst professionals. Pilots targeting the development of innovative and research-based models of intervention/training and support have been initiated. • Development of a model of service delivery to meet the unique needs of individuals with autism living in rural areas of the state. • Establishment of comprehensive statewide and regionally targeted autism informational resources.

11. OFFICE OF MENTAL RETARDATION + AUTISM AFFAIRS = THE OFFICE OF DEVELOPMENTAL PROGRAMS • Announcement of new office Feb. 6, 2007 • Establishment of the new Bureau of Autism Services within the Office of Developmental Programs (ODP)

12. BUREAU OF AUTISM SERVICESCentral and Regional OfficesClinical & Operational Staff Located in all Three Regions

13. WHAT WE’VE DONECensus Project • Initiative to develop an estimate of the number of individuals with ASD residing in PA • Project supervised by Dr. David Mandell from the University of Pennsylvania’s Center for Mental Health Policy and Services Research • Data is being compiled from a number of existing public information systems, including DPW, PDE, PA counties and the U.S. Census This data is being synthesized, analyzed and used for planning as a system of support is developed

14. WHAT WE’VE DONENorristown Pilot Project • We are funding a study to determine the extent to which residents in state psychiatric hospitals meet the criteria for ASD. • Project supervised by Dr. David Mandell from the University of Pennsylvania’s Center for Mental Health Policy and Services Research. • Preliminary data indicates as many as 15% of residents may be individuals with ASD; further analysis is under way.

15. WHAT WE’VE DONEDIAGNOSIS AND ASSESSMENT • Dr. Susan Levy of Children’s Hospital of Philadelphia (CHOP) led a team of experts (Autism Assessment and Diagnosis Expert Workgroup) in developing a consistent, practical standard for diagnosis of ASD. • Autism Assessment and Diagnosis Expert Workgroup Report distributed publicly Feb. 8, 2007 by First Signs – report available online on our web site. (www.autisminpa.org) • We collaborated with PDE to establish statewide autism assessment standards and to recommend assessment tools.

16. WHAT WE’VE DONEFirst Signs We supported the goals of the expert workgroup to improve screening and referral practices. • Dr. John McGonigle of the University of Pittsburgh Medical Center, were offered April through June 2007. • 7 state-wide trainings • 651 participants • Preliminary results indicate increases in participants’ knowledge of: • Early warning signs • Appropriate referral practices • The importance of routine developmental screenings(http://www.firstsigns.org)

17. Increase the Number of Professionals Who Can Diagnose ASD TRAIN THE TRAINER We are supporting the “Train the Trainer” Model in the use of research study standard diagnostic tools, being implemented by Nancy Minshew, M.D. of the University of Pittsburgh, to develop expertise in the use of the Autism Diagnostic Observation Schedule (ADOS) First training cohort involved 10 participants, including Master’s & Ph.D.-level students. Additional Training is being planned. Second training has been rescheduled

18. TRAINING, TRAINING……… • Trainings for Behavioral Health Management Companies and wraparound providers. • Trainings for Professionals on the diagnostic standard developed by the Expert Workgroup, led by Dr. John McGonigle of the University of Pittsburgh Medical Center, were offered April through June 2007. Training Needs of Adult Service Providers • Few providers are prepared to meet the unique needs of adults with ASD across settings (home, work, community) • Training modules in development • Dynamic online content delivery with post testing to assure direct care staff learn the material • Status: Rollout for the 1st module is scheduled for August, 2007

19. AND MORE TRAINING... • We collaborated with PDE to produce a training video for educators and BHRS staff • October 6: Autism 101 Training Videoconference • 850 participants • Intro to ASD, including family issues • DVDs mailed out to all BHRS providers • Additional topics for collaborative trainings are being planned • For Copies, Email the Bureau of Autism Services at DPW-AutismOffice@state.pa.us

20. AND MORE TRAINING… • We are offering regional Functional Behavior Assessment (FBA) Trainings to BHRS Providers free of charge • Presenters: • Claire Maher Choutka, M.Ed., BCBA, Clinical Director, Bureau of Autism Services • Stacey Nonnemacher, M.Ed., ABD, Northeast Region Clinical Consultant, Bureau of Autism Services STATUS: Four Trainings were held regionally, statewide. All four sessions were well attended. Additional training anticipated during FY ‘07

21. Sponsored pilot projects to identify and promote good practice in meeting the needs of individuals with ASD Outcome measures are due at the end of the grant period. Innovative models of service delivery for children and adolescents with ASD- 6 grants awarded Eastern PA: Special People in the Northeast; The Center for Autistic Children Central PA: Philhaven; Keystone Family Services Western PA: The Watson Institute; Western Psychiatric Institute Model of Rural Service Delivery Grants awarded to: Gertrude Barber National Institute ABOARD/DuBois Regional Medical Center PROMOTING BEST PRACTICES

22. SUMMER INSTITUTE NATIONAL CONFERENCE • We were a sponsor in the 2006 Summer Institute National Autism Conference in State College, PA • 220 training scholarships awarded to front-line behavioral health professionals Sponsored a parent panel and a self-advocate panel discussion • Hosted a family picnic • Hosted 2 sessions and a parent resource table • 2007 Summer Conference planned • 250 additional scholarships awarded to BHRS staff • Presentations from Pilot Project Grant Recipients on findings

23. Supporting a model to address the needs of economically disadvantaged communities. The average age of diagnosis for children residing in urban centers is 6-7 years old (if they are “fortunate” enough to receive a diagnosis- many are not appropriately diagnosed). We hope to collaborate with Department of Education and the Department of Labor and Industry to develop a model of transition to higher education and/or work for young adults with ASD. PROMOTING BEST PRACTICES

24. FAMILY ISSUES • All families are unique. • Families have difficulty navigating the “system”. • Raising a child with ASD can be lonely, children do not have many friends, siblings may feel left out. • Parents may have to quit job or reduce hours to care for the child or adult with ASD. • Parent groups are a great source of support and information and community

25. SUPPORT FOR FAMILIES • FAMILY AND INDIVIDUAL MINI-GRANTS - Awarded over 1,300 PA families up to $500 mini-grants to help support families living with ASD. Grants were awarded to assist with respite care, community inclusion, home accommodations and summer programming, • RESOURCES AND INFORMATIONAL MATERIALS - We are developing web-based and hard copy materials which will be made available to families statewide by region.

26. JUVENILE AND CRIMINAL JUSTICE • People living with ASD can experience problems with law enforcement because of misinterpretation of the behaviors and characteristics of ASD. • Lack of knowledge and awareness by the public in general, law enforcement andthroughout the court systems, contribute to many unwarranted interactions with the law and even incarnation.  This, in combination with the lack of appropriate placements when incarceration is warranted, have caused this issue to take on national significance and urgency.   • In an effort to reduce preventable entry into the Juvenile Justice and Criminal Justice systems, a conference was held on January 17, 2007 in Harrisburg as a cross-system initiative attended by those in the criminal justice field. Issues surrounding awareness, training, and alternatives were discussed. • On June 4, 2007, BAS  participated in a training conference for the President Judges throughout Pennsylvania regarding the criminal justice system and people living with disabilities. This was another cross-system initiative and included BAS, the Department of Public Welfare's Office of Children, Youth, and Families; the Juvenile Court Judges' Commission, and the Juvenile Law Center. The discussion centered on awareness, training, next steps, and most significantly, the concern that appropriate and alternative placements are not currently available. • BAS will continue to look for opportunities to train and enlighten those in the criminal justice system in recognizing and handling situations involving the law enforcement/criminal justice system and folks living with autism.  We hope to be forming a cross-systems workgroup to address these issues.  

27. SERVICES FOR ADULTS AND THEIR FAMILIES LIVING WITH ASD AUTISM CAPITATED ASSISTANCE PROGRAM (ACAP) AUTISM WAIVER

28. ACAP AND AUTISM WAIVER • Both delivery systems are being developed to provide services for adults living with ASD and their families – Those without MR are virtually not being served. • Both ACAP and the Autism Waiver will provide similar services designed to provide meaningful community inclusion and promote independence, self-sufficiency and self-direction. • Target – 21 years and older with ASD.

29. ACAP • Is a capitated program. • Uses the federal PIHP (Prepaid Inpatient Health Plan) funding model used currently by Long Term Living – one rate paid to one provider for an array of services. • Is a pilot project – serving 100 adults in one region of the state using one provider. • Rollout is targeted to begin in the Fall of 2007. • Is a program where a single provider develops a network of providers to support an individual’s needs. • Offers a team approach, including the individual, family, health professionals, to assess and determine needs. • Flexible – We have set minimal standard services, however the treatment team can recommend other services needed by the consumer. • Expansion of pilot is dependent on outcomes.

30. AUTISM WAIVER • Fee-for-Service Program • Target to rollout July 2008 serving 100 consumers. • Anticipated growth in subsequent years. • Use a supports coordinator vs. team. • Initially, BAS will collaborate with supports coordinators in assessment and determination of needs. • Requires continuity and communication between provider and supports coordinator. • Supports Coordinators are independent – can not be a provider or a state employee. • Provides a specific array of services. • Financial eligibility determined by CAOs. • Will be administered at the state level vs. the county level.

31. WHAT ELSE • Staff our organization • Continued training in all areas • Continued support for BHRS services • Continued development of adult service delivery systems. • Continued Family support • Follow-up on the recommendations resulting from the Criminal Justice Conference held in January 2007 • Begin collaborating with the Departments of Education, Labor and Industry and other agencies to develop a model of transition to work and community living for young adults with ASD that will produce meaningful outcomes

32. Bureau of Autism ServicesNina Wall-Cote, Director • Email us at: DPW-AutismOffice@state.pa.us • Visit our Website: www.autisminpa.org • Contact us at 717-265-7760 or Toll Free in Pennsylvania at 866-497-6898