BUREAU OF AUTISM SERVICES
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1 COMMONWEALTH OF PENNSYLVANIA Office of Developmental Programs BUREAU OF AUTISM SERVICES Nina Wall-Côté, MSS, LSW Director 1
2 OUR VALUES Support for those living with ASD throughout the life span. Support those living with ASD across the spectrum. Families need our support. Every person living with ASD can have an improved quality of life given the right supports delivered by trained staff. Our goal is to increase independence and selfsufficiency. Need to explore innovative models. 2
3 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 3
4 BUREAU OF AUTISM SERVICES Central and Regional Offices Clinical & Operational Staff Located in all Three Regions BUREAU OF OF AUTISM SERVICES Central Office Health and and Welfare Building Harrisburg, PA PA Western Region Pittsburgh State State Office Building Pittsburgh, PA PA Central Region Bertolino Building Harrisburg, PA PA Eastern Region Philadelphia State State Office Building Philadelphia, PA PA 4
5 Autism in Pennsylvania 19,951 1,400* Adults, 21 years of age and older - Served by DPW *BAS will be looking further at other state agencies and facilities to identify adults living with ASD. 4,377 - Under 21 served by DPW 3,940 Under 21 served in the autism category of special education 128 Under 21 - served in another category of special education 5,895 Under 21 - served through DPW and the autism category of special education 4,211 Under 21 - served through DPW and another special education exceptionality 5
6 Autism in Pennsylvania 6
7 What the Numbers Tell us The numbers in Pennsylvania are consistent with the national data. Rapidly increasing numbers and we do not completely understand WHY. Given the low number of adults, we know many adults living with ASD were not captured in our data. 7
8 People Living with ASD Are In Virtually Every System Education Mental Retardation Child Development and Early Learning Early Intervention Children, Youth and Families Mental Health Juvenile/Criminal Justice COLLABORATION IS NEEDED BETWEEN ALL SYSTEMS 8
9 Challenges Increasing population Lack of trained professionals Limited resources Families stressed Need to: Share responsibility and collaborate Address needs across the lifespan Look at the entire spectrum, not just those with cognitive deficits Support families 9
10 SERVICES FOR ADULTS AND THEIR FAMILIES LIVING WITH ASD AUTISM WAIVER - Began taking requests for applications July 1, 2008 toll free phone number to request applications is , Option 1. ADULT COMMUNITY AUTISM PROGRAM (ACAP) Written approval received from the Center for Medicare and Medicaid Services (CMS) in January Program to start Spring Additional information can be obtained by calling , option 5, then option 2, if in Pennsylvania, or , if outside of Pennsylvania. 10
11 PA ADULT AUTISM WAIVER AND THE ADULT COMMUNITY AUTISM PROGRAM (ACAP) Both delivery systems will serve adults, 21 years and older, living with ASD and their families. Both the Autism Waiver and ACAP are assessment and outcome driven. Assessments inform delivery of services Outcome determine measure of success: Increased hours of employment (paid or volunteer) Decreased psychiatric hospitalizations and medication Decreased involvement with law enforcement Improved capacity to perform independently Decreased frequency and length of crises Decreased family stress Both require providers to complete ASD-specific training and demonstrate competence. Behavioral and crisis support are key services in both programs. 11
12 PENNSYLVANIA AUTISM WAIVER First Waiver Targeting Adults with ASD in the Nation! Response to key findings of the Autism Task Force. Specifically designed to meet the needs of people living with Autism Spectrum Disorder (ASD). Assessment and outcome driven. Initial capacity will serve 200 individuals statewide. Providers are required to complete ASD-specific training and demonstrate competence. 12
13 AUTISM WAIVER To be eligible: Live in Pennsylvania Have a diagnosis of ASD. Age 21 or older by the time of enrollment Meet Medical Assistance financial eligibility. Meet Intermediate Care Facility level of care. Intelligence (IQ) is not considered for eligibility. Waiver Services may include: Respite - Family counseling Community inclusion - Day habilitation Supported employment - Family Training Job Assessment and Finding - Occupational Therapy Transitional Work Services - Supports Coordination Behavior supports - Speech/Language Therapy Crisis intervention - Residential habilitation Environmental modifications - Nutritional consultation Counseling - Assistive Technology 13
14 Adult Community Autism Program (ACAP) 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. Pilot Program Will serve 200 individuals - initially available in Cumberland, Dauphin, and Lancaster counties only. Additional ACAP programs will be rolled out in the future as resources are available. Assessment and outcome driven. Keystone Autism Services - ACAP provider developing provider network to support an individual s needs. Flexible Offers a team approach, including the individual, family, the ACAP Provider and health professionals. ACAP Provider and their network will offer an established list of services, including physician/physical health services and services to support the individual in the community. Additional services can be provided if cost effective and necessary to keep individuals living in their communities. 14
15 Adult Community Autism Program (ACAP) Designed for individuals: Age 21 and older Diagnosis of Autism Spectrum Disorder Be eligible for Medical Assistance Be certified as meeting Medical Assistance Program clinical eligibility for Intermediate Care Facility (ICF) services in the Commonwealth of Pennsylvania Not enrolled in a Medical Assistance home and community based waiver program at the time of application 15
16 Adult Community Autism Program (ACAP) At the time of enrollment be able to live in a community setting without sixteen (16) or more awake paid and unpaid staff and supervision hours per day without presenting extreme danger to self or others or a threat to property Does not exhibit levels of extremely problematic behaviors that would present a danger to self or others or threat to property Reside in the service area at the time of enrollment Not enrolled in a Medical Assistance Managed Care Organization (MCO) at the time of enrollment in the Plan 16
17 Adult Community Autism Program (ACAP) Supports May Include: Coordination of Supports Medical/Physician Services Behavioral Health Services Respite Community Integration Support Employment Behavior Specialist Services Crisis Intervention Assistive Technology Family Counseling 17
18 Autism Services, Education, Research, and Training (ASERT) Regional Centers Recommendation of the Autism Task Force Priority for Families Focus on training, applied research, service delivery and information dissemination Collaborative partnerships Needs assessment Support to BAS in efforts to build statewide capacity 18
19 Autism Services, Education, Research, and Training (ASERT) Regional Centers Autism Services - Ensure that people living with autism and their families, in every part of the Commonwealth, can access quality supports and interventions that are based on best practices and provided by trained professionals Education Develop educational materials relative to ASD and disseminate to families, providers and all other stakeholders. Research - Research yielding practical and measurable results that contributes to the enhancement of quality of life for people with autism and provide evidence-based information for use by families and service providers. Training Partners in the development of standards and the professional capacity to support the needs of individuals with ASD across the lifespan. 19
20 PA ASERT Regional Centers ASERT Contact Information: Lindsay Lawer, MS Director PA Regional ASERT Center - East llawer@mail.med.upenn.edu Shiyoko Cothren, M.H.A. Director - PA Regional ASERT Center - Central scothren@psu.edu John McGonigle, Ph.D. Director PA Regional ASERT Center - West mcgoniglejj@upmc.edu Bureau of Autism Services: Nina Wall-Cote, MSS, LSW Director (717) Carol Lynch, MBA ASERT Project Officer (717) Claire Choutka, M.Ed., BCBA Clinical Director (717) Erica Wexler, Project and Training Coordinator BAS Staff Support (215)
21 Act 62 Significant collaboration of the public and private sectors producing the most comprehensive insurance legislation of its kind. Act 62 mandates private insurers to begin providing coverage, up to $36,000 annually, for the diagnosis and treatment of Autism Spectrum Disorders (ASD) for children under the age of 21 as of July 1, The services and coverage mandated by this bill are based on Medical Assistance (MA) definitions and standards of care to ensure that essential autism services are covered, including those to prevent regression. Medical Assistance (MA) remains a safety net. NEW Web site - QUESTIONS TO: RA-IN-AUTISM@STATE.PA.US 21
22 TRAINING FOR ADULT SERVICE PROVIDERS Training Needs of Adult Service Providers Few providers are prepared to meet the unique needs of adults with ASD across settings. Spectrum Training course: Includes nationally recognized subject matter experts and content. Consists of nine (9), 45-minute classes. Requirement for providers in ACAP and the Autism Waiver. A CD-ROM version of the training is being developed. 22
23 FBA TRAINING We have provided regional Functional Behavioral Assessment (FBA) Trainings to over 1400 BHRS Behavioral Support Consultants (BSCs) and Adult Service Provider Staff free of charge with free continuing education credits (CEUs). Fall 2008 classes are complete: 2-Day FBA Workshop- 750 more were trained 1-Day Advanced FBA training for staff who have completed the 2- day FBA workshop-additional 180 BSCs trained. Train-the-Trainer sessions with accompanying curriculum and DVD set are being conducted with each behavioral health managed care company (BHMCO), 8 sessions of each total of 360 trainers trained. FBA for TSS Staff: Addressing Challenging Behaviors Downlinked in August to 800 Therapeutic Staff Support (TSS) across the state. Training will be up on the BAS training website soon. Information about additional sessions will be posted on our website as it becomes available: 23
24 SAVE the DATE! 2 nd Annual Pennsylvania Autism Training Conference May 27-29, 2009 Tentative Location: Lancaster, PA Watch for details! 24
25 Continuing Education The Bureau of Autism Services is an approved provider of continuing education credits for: Educators (Act 48) Social Workers Board Certified Behavioral Analysts (BCBA/BCABA) Psychologists (APA) National Board of Certified Counselors (NBCC) 25
26 FAMILY ISSUES All families are unique Isolation and overwhelming stress 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 Significantly higher divorce rate in marriages for parents of children with ASD 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, information and community 26
27 SUPPORT FOR FAMILIES Family and Individual Support Grants Families apply for up to $500 to assist with respite care, community inclusion, home safety modifications, summer programming, etc. Based on feedback received from the autism community over the past two years, the mini-grant program has had meaningful impact on improving the quality of life of individuals and families living with ASD Awarded over 1,300 PA families a total of $650,000 in $500 mini-grants 2008 BAS funded more than one million dollars to support over 2,000 families. 27
28 BUREAU OF AUTISM SERVICES ADVISORY BOARD (BASAB) The BASAB is comprised of family members, selfadvocates, professionals, and advocates. Members have been appointed by the Secretary for Public Welfare and serve three-year terms. Serve a vital role in linking the Bureau to the larger Pennsylvania autism community and will provide valuable input to BAS on important initiatives. Actively engaged with the ASERT regional centers. Provide advice on the initiatives, programs, policies, and budget of the Bureau of Autism Services; offering input regarding the Bureau s strategic plan. 28
29 Biopsycho-Social Unit Western Psychiatric Institute and Clinic (WPIC) Part of the University of Pittsburgh Medical Center Pilot program serving children/adolescents and adults with ASD who can not be served by local medical/psych resources complex medication assessment issues co-morbid medical assessment needs multiple diagnosis issues program includes added training to support careful return to school, home, and community providers admission coordinated with BAS clinical office 29
30 Bureau of Autism Services Nina Wall-Cote, Director us at: Visit our Website: Contact us at or Toll Free in Pennsylvania at
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